I am thinking of going to the hospital and asking for a Prozac Drip. I've had it up to HERE (Imagine my hand by my eyebrows). Bugaboo is making me insane and sucking me down into his little vortex of crazy.
The doctors have long maintained that they do not think he is your classic case of Autism (as if there is one, supposedly everyone is different, think snowflakes). He has some real neurological issues that no one can place. He has something genetic going on (but not Fragile X, the usual male-linked and familial cause of developmental delays, usually what they look for when more than one family member has these issues). But today I have hit rock bottom with him. CAN SOMEONE PLEASE TELL ME WHAT THE &%$* is going on with MY KID?
He has been stripping and peeing all over my house. It smells awful.
He has hit his head several times and has bled all over, he doesn't feel it, he just rubs his head, face, lets it drip off of his nose, etc.
He bites his arms, elbows (yes, elbows, he is amazingly flexible) and knees until they bleed.
He breaks doors. He opens and closes them until the hinges break off or the door snaps off. He breaks every drawer in the house. Yes, we have baby locks. They are made for BABIES, not four-and-a-half-year-olds. He breaks those.
But then he sits on my lap, hugs and kisses me, calls me momma. My heart melts. And right now it aches more than I can describe. I am so tired of this! I cannot do this! I do not even want to think about what it will be like when he is older.
I long to hear my son's voice. I want to explain things to him and have him answer me back. I want him to have impulse control. He knows he is not supposed to do certain things and yet he CANNOT STOP HIMSELF. He just cannot stop moving. Ever. We even hear him thrashing about in his sleep.
No one said this would be easy. I know that. I am not looking for easy. I am just praying that it doesn't have to be THIS hard always. I just want him to eat the flipping cereal instead of screaming, because he liked it yesterday. In fact, he has LOVED it for six months. Today he hates it, but loves apple pie. Go figure.
Not that I'd ever do it, but I now understand how parents completely lose it and put their kids in cages to keep them safe. They do not know what else to do. I understand why people duct tape diapers on. I understand why they put more locks than the federal treasury on their doors. I understand why they never want to go out in public with their kids. There is all of this "help" out there, and yet no one can really help with these things. It is what it is.
I am not giving up the fight. I am just giving up on the battle today. I just cannot do this. I need to recharge, refresh, repurpose. I need to review why I need to do this. Heck, I thought I'd make it to church today. At this point, it looks like I am going to be observing Good Friday from home. I cannot picture Bugaboo going with me. I do not think they have ever seen a nekkid, peeing, autistic child in that church. And they won't. I will not bring him until he can control himself.c
29 out of 30 days I am positive, motivated, willing to do anything for my child. Today I cannot even stand being near him, it brings me to tears. I feel a little guilty over that. But not really. I am guessing others feel this way on occasion.
Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Friday, April 06, 2007
Tuesday, April 03, 2007
Painfully Obvious
While we were at my favorite red-dot-store-that-rhymes-with-Barget this morning, I ventured over to the pharmacy to get the next month's supply of Bugaboo's meds. They know me by name and never have to ask. I merely show up and they grab my stuff. That is how often I am there!
Anywho, while there I saw a mom pushing her little guy around in a special stroller. He was in his footy pjs (like my kids!) and had some physical challenges. We chatted a bit while we waited. Her little boys smiled and laughed. He just couldn't move.
I am guessing he was two-years-old but because of his physical limitations he could be small for his age. But as we left (and ran into them again at the elevator) I have to admit I was nearly in tears just thinking about that little boy. I cannot even imagine what his parents have gone through to this point. He has a feeding tube and mickey and has sensors to make sure he is breathing and his heart keeps beating. He cannot independently move out of that chair. His every need is taken care of by his mother and nurse (who was with them). She had a cart full of Easter stuff, my guess is that she has other children. Four, from the amount of goodies in her cart!
Why did this affect me so? Her child's condition is fairly obvious. On first sight most people could guess that he had Cerebral Palsy. He may even have been a preemie, due to his small size. I really do not know. Most people know what to expect with a child with CP. Often their brains are intact (average to mildly below average intelligence ) and their bodies cannot move. Sometimes it is more severe. A child with Down's Syndrome has obvious physical features. Most people know that they have developmental delays and often speech issues. But a child with Autism? Most times they look like everyone else. I do not know if this is a blessing or a curse.
At least with my child no one will have a preconceived notion of what to expect from him. I know that this is debatable, since each child with a disability is different, even within their own diagnoses. People are usually shocked to find out that my children have issues, on first sight. Once they observe their behavior I usually get a knowing glance (the, "It's-ok, I-have-a disabled-child, too!" look, like this morning) or a pity glance (the "Wow! Sucks-to-be-you!") or better still, the "Look-of-horror-and-disgust-combined-with-embarrassment-and-wanting-to-shrink-away-and get-their-child-out-of-there-before-they-catch-something-contagious" look. Those of you with children with "issues" (because I hate the word disability, really) know what I am talking about.
The thing is that even though people aren't going to judge my children right off the bat like some children they also will not be given any allowances. People will assume (and they do!) that they are normal and just spoiled. Or give me dirty looks in the grocery when Bugaboo is shrieking, buzzing, flapping, stimming, etc. I even get little old lady (and some young ladies) scolding me for not using the belt, which he has taken off about fifty times. My only defense is to repeat the grocery mantra, "You need to sit! Sit down! That is unsafe! Sit in the cart! Do not climb out!" and I still have my hands on him the ENTIRE TIME, yet he manages to jump out while I am checking eggs and run laps around the store. The people at TJs know all about us, as they do at the little co-op in town (which isn't truly a co-op, but I digress). I felt compelled to tell them so they'd be a little more understanding with us and they are VERY kind. They even help us out.
With everything in my life, their disbilities are a mixed blessing. They have taught me lessons I never knew I needed (or wanted) to learn. At the same time, I am almost jealous of the woman with the child who could not move (those of you who know me personally know why!) because of what I go through with Bugaboo. Then I feel like an ungrateful wretch because I have this perfectly healthy, happy child who may have neurological differences but is a a joy to most people. I never get tired of hearing from perfect strangers (and friends and family) how gorgeous my little boy is. I never tire of people asking me about Bug Boy's little genetic hair display (think: Calico kitty!).
No parent of a child with issues has it easy. No parent has it easy. Parenting is a difficult job to begin with . Add in the stress of dealing with a child with special needs and you have recipe for disaster. No wonder the divorce rate is so high among people with children with special needs! The paperwork, therapies, denial of services, meetings, people coming and going, schedule, appointments, it never stops! It is a full-time job in itself, so I appreciate being able to stay home and dedicate myself to it. After twelve hours of Bugaboo I feel like I have been doing hard labor.
As for the word "disabled," I hate it because it is so negative and condescending. It focuses on what your child CANNOT do instead of what they CAN do. Do not misunderstand me, I am not one of the "So-PC-It-Mkes-Me-Want-To-Puke" types. I just wish folks would stop being so hung up on a bunch or words and concentrate on the whole child! Concentrate on the blessings! Concentrate on the love!
Speaking of the love, he has been helping me type all along. Nothing like having "help." I apologize for the lack of proofreading and proper spelling and grammar! I just wanted to post it as quickly as I could before he deleted it all!
Anywho, while there I saw a mom pushing her little guy around in a special stroller. He was in his footy pjs (like my kids!) and had some physical challenges. We chatted a bit while we waited. Her little boys smiled and laughed. He just couldn't move.
I am guessing he was two-years-old but because of his physical limitations he could be small for his age. But as we left (and ran into them again at the elevator) I have to admit I was nearly in tears just thinking about that little boy. I cannot even imagine what his parents have gone through to this point. He has a feeding tube and mickey and has sensors to make sure he is breathing and his heart keeps beating. He cannot independently move out of that chair. His every need is taken care of by his mother and nurse (who was with them). She had a cart full of Easter stuff, my guess is that she has other children. Four, from the amount of goodies in her cart!
Why did this affect me so? Her child's condition is fairly obvious. On first sight most people could guess that he had Cerebral Palsy. He may even have been a preemie, due to his small size. I really do not know. Most people know what to expect with a child with CP. Often their brains are intact (average to mildly below average intelligence ) and their bodies cannot move. Sometimes it is more severe. A child with Down's Syndrome has obvious physical features. Most people know that they have developmental delays and often speech issues. But a child with Autism? Most times they look like everyone else. I do not know if this is a blessing or a curse.
At least with my child no one will have a preconceived notion of what to expect from him. I know that this is debatable, since each child with a disability is different, even within their own diagnoses. People are usually shocked to find out that my children have issues, on first sight. Once they observe their behavior I usually get a knowing glance (the, "It's-ok, I-have-a disabled-child, too!" look, like this morning) or a pity glance (the "Wow! Sucks-to-be-you!") or better still, the "Look-of-horror-and-disgust-combined-with-embarrassment-and-wanting-to-shrink-away-and get-their-child-out-of-there-before-they-catch-something-contagious" look. Those of you with children with "issues" (because I hate the word disability, really) know what I am talking about.
The thing is that even though people aren't going to judge my children right off the bat like some children they also will not be given any allowances. People will assume (and they do!) that they are normal and just spoiled. Or give me dirty looks in the grocery when Bugaboo is shrieking, buzzing, flapping, stimming, etc. I even get little old lady (and some young ladies) scolding me for not using the belt, which he has taken off about fifty times. My only defense is to repeat the grocery mantra, "You need to sit! Sit down! That is unsafe! Sit in the cart! Do not climb out!" and I still have my hands on him the ENTIRE TIME, yet he manages to jump out while I am checking eggs and run laps around the store. The people at TJs know all about us, as they do at the little co-op in town (which isn't truly a co-op, but I digress). I felt compelled to tell them so they'd be a little more understanding with us and they are VERY kind. They even help us out.
With everything in my life, their disbilities are a mixed blessing. They have taught me lessons I never knew I needed (or wanted) to learn. At the same time, I am almost jealous of the woman with the child who could not move (those of you who know me personally know why!) because of what I go through with Bugaboo. Then I feel like an ungrateful wretch because I have this perfectly healthy, happy child who may have neurological differences but is a a joy to most people. I never get tired of hearing from perfect strangers (and friends and family) how gorgeous my little boy is. I never tire of people asking me about Bug Boy's little genetic hair display (think: Calico kitty!).
No parent of a child with issues has it easy. No parent has it easy. Parenting is a difficult job to begin with . Add in the stress of dealing with a child with special needs and you have recipe for disaster. No wonder the divorce rate is so high among people with children with special needs! The paperwork, therapies, denial of services, meetings, people coming and going, schedule, appointments, it never stops! It is a full-time job in itself, so I appreciate being able to stay home and dedicate myself to it. After twelve hours of Bugaboo I feel like I have been doing hard labor.
As for the word "disabled," I hate it because it is so negative and condescending. It focuses on what your child CANNOT do instead of what they CAN do. Do not misunderstand me, I am not one of the "So-PC-It-Mkes-Me-Want-To-Puke" types. I just wish folks would stop being so hung up on a bunch or words and concentrate on the whole child! Concentrate on the blessings! Concentrate on the love!
Speaking of the love, he has been helping me type all along. Nothing like having "help." I apologize for the lack of proofreading and proper spelling and grammar! I just wanted to post it as quickly as I could before he deleted it all!
Friday, March 23, 2007
The Magic Pill
I have been asked many times and have also read about the magic pill. You know, that hypothetical-rhetorical-silly-shouldn't-be-dwelled-upon-question. If there was a magic pill, a cure, a tried-and-true way to make Bugaboo "normal." Would I do it?
And the answer is...
I do not know.
You see, if someone had come to me in the beginning when we first suspected that something was going on with the boys I would have said yes. I was just starting out in this world, you know, the autism planet? I had no idea what to expect, did not know which way was up, did not really know who my children were. I was afraid, felt alone, was depressed and had a million times more questions than answers. Heck, I had NO answers. All I could think about was question mark, question mark, questions mark. I cried constantly. I was frightened. I did not want my children to have a difficult time in life.
Bug Boy is doing great. No magic pill. He receives necessary therapy, eats a well-balanced diet and now has his seizures under control. He is happy and well-adjusted. He still has his moments in school (must be first, easily led by others, difficulties with transitions) but has improved 1000% this year. His teachers have made a huge difference. It will still be a long road but I believe that he will be a normal, functioning member of society. He is happy and loved. That is all that matters to us.
Bugaboo is doing great. He is still non-verbal. He still is not potty-trained. He still is extremely hyperactive, has reflux, has bowel issues and chronic infections. He is happy and loved. He loves school and his therapists and teachers. He loves school buses. No magic pill.
But would I give him one now?
I do not know. I hope I am never faced with the decision.
If he is good enough for me now, he is good enough for me later. I love him whether or not he speaks. I love him even when he is running all over the house earning his "Doctor Destructo" nickname.
But if there was a guaranteed way to take away all of the difficult things about Autism, the self-biting, the potty issues, the nonverbal stuff, the funny noises, the crying, the sleep issues, would I do it?
No.
I would not. I believe that giving him a magic pill would be sending the wrong message. It would be telling him that there is something WRONG with him. It would tell him that he is not got enough the way he is and therefore MUST be changed. It would tell him that we do not love him the way he is, unconditionally. That we won't love him until he is different. What kind of message is that to send to your child? Hey kid! Your eyes are green. If you change them I will love you more! Honey, if you get that mole removed then I will love you and take care of you better! Grow to six-feet-tall and we are sooooo there!
Not in your lifetime.
Even with all of the challenges, I have to honestly tell you he is here to stay. And so are we.
And the answer is...
I do not know.
You see, if someone had come to me in the beginning when we first suspected that something was going on with the boys I would have said yes. I was just starting out in this world, you know, the autism planet? I had no idea what to expect, did not know which way was up, did not really know who my children were. I was afraid, felt alone, was depressed and had a million times more questions than answers. Heck, I had NO answers. All I could think about was question mark, question mark, questions mark. I cried constantly. I was frightened. I did not want my children to have a difficult time in life.
Bug Boy is doing great. No magic pill. He receives necessary therapy, eats a well-balanced diet and now has his seizures under control. He is happy and well-adjusted. He still has his moments in school (must be first, easily led by others, difficulties with transitions) but has improved 1000% this year. His teachers have made a huge difference. It will still be a long road but I believe that he will be a normal, functioning member of society. He is happy and loved. That is all that matters to us.
Bugaboo is doing great. He is still non-verbal. He still is not potty-trained. He still is extremely hyperactive, has reflux, has bowel issues and chronic infections. He is happy and loved. He loves school and his therapists and teachers. He loves school buses. No magic pill.
But would I give him one now?
I do not know. I hope I am never faced with the decision.
If he is good enough for me now, he is good enough for me later. I love him whether or not he speaks. I love him even when he is running all over the house earning his "Doctor Destructo" nickname.
But if there was a guaranteed way to take away all of the difficult things about Autism, the self-biting, the potty issues, the nonverbal stuff, the funny noises, the crying, the sleep issues, would I do it?
No.
I would not. I believe that giving him a magic pill would be sending the wrong message. It would be telling him that there is something WRONG with him. It would tell him that he is not got enough the way he is and therefore MUST be changed. It would tell him that we do not love him the way he is, unconditionally. That we won't love him until he is different. What kind of message is that to send to your child? Hey kid! Your eyes are green. If you change them I will love you more! Honey, if you get that mole removed then I will love you and take care of you better! Grow to six-feet-tall and we are sooooo there!
Not in your lifetime.
Even with all of the challenges, I have to honestly tell you he is here to stay. And so are we.
Monday, March 19, 2007
My Greatest Heartache and My Proudest Moments
How is it possible that the one thing in my life that brings me the greatest heartache could make me so proud and happy at the same time?
Yet, it is true. The one thing, the part of my life that brings me the greatest joy, the thing that I think about in all of my waking moments is also what makes me heartache with true pain and causes me to worry quite needlessly.
I think you know what I am talking about. My children.
They make me happier than anything every could. No object, amount of money or, dare I say, even food makes me as happy as holding and loving my children. They are literally sunshine on a cloudy day. Even a day like Friday. When they wake up in the morning and stretch their arms out to hug me I suddenly gain 1,000 points of energy. When I go into Bugaboo's room in the morning to kiss his cheek and get him out of bed he is instantly smiling and beaming at me from ear to ear with a smile that radiates warmer than the sun. Bug Boy's hugs are like no one else. He holds you like he will never let go.
Despite the joy they give me and my attempts to forget about the painful moments they are still there, looming over me at times. Almost as if the painful parts are whispering, "Don't forget about me! You aren't supposed to be this happy!" And yet I am. Once in a while the pain and sadness consumes me and I have a mini-pity party for myself. I give up on house work. I "forget" to cook dinner. I ignore friends' phone calls. I cry when Darling returns home and he holds me and looks surprised that I am feeling that way. He does not quite know what to do.
There is nothing to do. I think part of healing, part of learning to live with things that cause me pain, part of learning to accept things that I cannot change, is going through cycles of feelings. I have to experience the sadness, pain and sorrow so that I truly know what joy feels like. Without having the "bad times" to reference, how could I possibly enjoy the good times? I would not appreciate them half as much if I had not taken two steps back before I was able to move forward. In order for me to be content I feel that part of the package is to grow and understand and accept. I must learn patience (oh boy, do I!) and strength. I have to learn love.
I know there are many rough times ahead. I cannot even begin to imagine what it will be like for us but I know it will come. I will be as prepared for it as I can possible be. But I will not dwell on it. I will not let it consume my life and worry about it to the point that I cannot allow myself to be happy now. What a waste of time! Life is so short and I am not going to live it with my head down, afraid of the next thing to come around the corner. We have been through so much already. Although I thought (at the time) that I would never get through those difficult moments, I can now look back and appreciate them for making me who I am today. I am not the nervous Nelly I once was. I am not the naive girl who allows others to make decisions for her and tells her what to do in every circumstance for fear of making a mistake. Gone are the days where I sought out everyone's approval before I could come to terms with a situation. Now Darling and I face them head on (as he always has! He is my strength!) and just deal with it. That is all anyone can do. There is no changing this thing.
There are people in this world that want to cure Autism. That is their prerogative, I am not going to change their minds. I just wish they would stop all of these expensive, insurance-won't-pay-for-it types of treatments. There are so many "experts" out there to take advantage of parents who are desperate, sad, stressed, impatient and hopeless. I wish I could tell them all that there is hope! There is happiness! There is light at the end of this tunnel! Autism is NOT a death sentence. Now, it is not easy. No one ever said it would be. But you will learn to appreciate life so much more because of it. You can be content! You can find peace!
There are no guarantees in life. You get what you get and you have to deal with it and move on. There are certain things that are in your control and certain things that are not. It takes wisdom and patience to understand the difference. I can guarantee you will be much happier once you learn the difference. It just takes time.
Yet, it is true. The one thing, the part of my life that brings me the greatest joy, the thing that I think about in all of my waking moments is also what makes me heartache with true pain and causes me to worry quite needlessly.
I think you know what I am talking about. My children.
They make me happier than anything every could. No object, amount of money or, dare I say, even food makes me as happy as holding and loving my children. They are literally sunshine on a cloudy day. Even a day like Friday. When they wake up in the morning and stretch their arms out to hug me I suddenly gain 1,000 points of energy. When I go into Bugaboo's room in the morning to kiss his cheek and get him out of bed he is instantly smiling and beaming at me from ear to ear with a smile that radiates warmer than the sun. Bug Boy's hugs are like no one else. He holds you like he will never let go.
Despite the joy they give me and my attempts to forget about the painful moments they are still there, looming over me at times. Almost as if the painful parts are whispering, "Don't forget about me! You aren't supposed to be this happy!" And yet I am. Once in a while the pain and sadness consumes me and I have a mini-pity party for myself. I give up on house work. I "forget" to cook dinner. I ignore friends' phone calls. I cry when Darling returns home and he holds me and looks surprised that I am feeling that way. He does not quite know what to do.
There is nothing to do. I think part of healing, part of learning to live with things that cause me pain, part of learning to accept things that I cannot change, is going through cycles of feelings. I have to experience the sadness, pain and sorrow so that I truly know what joy feels like. Without having the "bad times" to reference, how could I possibly enjoy the good times? I would not appreciate them half as much if I had not taken two steps back before I was able to move forward. In order for me to be content I feel that part of the package is to grow and understand and accept. I must learn patience (oh boy, do I!) and strength. I have to learn love.
I know there are many rough times ahead. I cannot even begin to imagine what it will be like for us but I know it will come. I will be as prepared for it as I can possible be. But I will not dwell on it. I will not let it consume my life and worry about it to the point that I cannot allow myself to be happy now. What a waste of time! Life is so short and I am not going to live it with my head down, afraid of the next thing to come around the corner. We have been through so much already. Although I thought (at the time) that I would never get through those difficult moments, I can now look back and appreciate them for making me who I am today. I am not the nervous Nelly I once was. I am not the naive girl who allows others to make decisions for her and tells her what to do in every circumstance for fear of making a mistake. Gone are the days where I sought out everyone's approval before I could come to terms with a situation. Now Darling and I face them head on (as he always has! He is my strength!) and just deal with it. That is all anyone can do. There is no changing this thing.
There are people in this world that want to cure Autism. That is their prerogative, I am not going to change their minds. I just wish they would stop all of these expensive, insurance-won't-pay-for-it types of treatments. There are so many "experts" out there to take advantage of parents who are desperate, sad, stressed, impatient and hopeless. I wish I could tell them all that there is hope! There is happiness! There is light at the end of this tunnel! Autism is NOT a death sentence. Now, it is not easy. No one ever said it would be. But you will learn to appreciate life so much more because of it. You can be content! You can find peace!
There are no guarantees in life. You get what you get and you have to deal with it and move on. There are certain things that are in your control and certain things that are not. It takes wisdom and patience to understand the difference. I can guarantee you will be much happier once you learn the difference. It just takes time.
Tuesday, March 13, 2007
Surprise!
For those of you who have been to my house, you understand about the "window" between the boys' rooms. For those of you who haven't, allow me to explain.
The previous owners had three teen aged boys and a television in every room. The rooms are not huge, so in an attempt to save space in the rooms their boys came up with a clever (but horribly ugly and white-trashy) solution. The decided to cut a hole in the wall of what is now Bug Boy's room into the closet of what is now Bugaboo's room. That way, the boy who used to live in Bug Boy's room could be in bed watching television, they would put it on the top shelf of Bugaboo's closet facing into Bug Boy's room.
Is that confusing? Did I explain it ok? Hope so.
Ok, back to the story: The hole is still there. Bugaboo used to be in Bug Boy's room with the cutout in his wall. We did not like him in that room because his window is directly over a very long drop to the ground and we felt it was dangerous, not to mention his room was further from ours. So a few months ago we switched Bug Boy and Bugaboo, so Bug Boy is now in the room with the hole in the wall and Bugaboo is in the room with the hole in the closet. After a few weeks in that room Bugaboo began climbing onto his dresser, breaking the baby locks and pulling the drawers out like stairs. We bought straps to bolt his dresser to the wall but decided that it would be safer just to put the dresser in the closet. It is a standard baby dresser, longer than it is tall, cut out for the changing area that we never used, cheesy wood (don't ever by a crib-to-college set, you never want the set after toddlers are done with it unless you paid $$$ for a solid oak or well made set) and stuff that I want to get rid of. Anywho, guess what? Bugaboo began climbing on the dresser to get to his fish lamp, which we had placed on the closet shelf so that he would stop ripping the plug out of the wall. We had it on the shelf and ran the cord through the hole and into Bug Boy's room to plug in. Once he began climbing up there we contemplated removing the dresser altogether and eventually moved the fish lamp out of his room, since he wouldn't go to sleep with the light on. We left the dresser intact.
At some point we knew we'd get around to drywalling the hole in since it is unsightly and strange and has outlived its usefulness. We have yet to paint (or finish with joint compound, for that matter) and knew we'd get to it when the drywall phase was being worked on, which we hope to do this spring. It just has not been a priority, like floods in our backyard and failing appliances. You know, real life got in the way in the past eighteen months. It never occurred to us that the hole would need to be boarded up SOONER rather than LATER.
We are really good at procrastinating these days. After eight years of fixing up a one hundred-year-old house, we are tired of home improvement.
We knew Bugaboo would climb up into the hole and watch Bug Boy and laugh at him, and Bug Boy would throw things at Bugaboo to get him down. We kept saying, "We need to do this next week!" Tonight became next week!
You know what happened already, don't you???? So I can stop now, 'cause you already know.
Just kidding.
After putting the boys to bed this evening we settled on the couch and I almost immediately began dozing. My back is still hurting and I am exhausted. A few minutes after they were in bed we heard some loud noises, Bug Boy's door opening and many footsteps approaching us. Bug Boy burst into the Family room and blurted out, "Mom! Dad! We have a problem!"
Bugaboo was right behind him. Completely Nekkid. No footies. No diaper. Nothing.
He jumped up and down and looked absolutely pleased as punch. Quite proud of himself, really. We did our best to stifle the hysterics we were feeling and through the hands clapped over our mouths (and tears sliding down our face in fits of laughter) we told the kids we were going back upstairs. We were actually afraid of what we would find, but thank goodness he had already produced a bowel movement today. His room was, however, covered in little puddles. Yup, his bed, two spots on the floor, his dresser and half of the clothes hanging in his closet were covered with pee. Bug Boy even helped us strip and remake the bed, clean up the pee and move the dresser out of his closet. They are now back in bed and (we hope) asleep.
Bugaboo did undress himself last evening and I heard him crying in frustration so I went to check on him. It turns out that he had stripped himself (a regular thing around here, nekkid Bugaboo at all hours of the day) and was attempting to put a diaper on himself and cried because he couldn't quite get it right. Poor kid!
Word to the wise: If you are ever faced with the decision to purchase a home that may or may not have a hole cut into the wall (though artfully framed in with trim) and have active boys with advanced motor skills or a Harry-Houdini-monkey-of-a-son or a child with autism who likes to strip nekkid and pee and climb through windows, do not buy the house. Or at least have the foresight and initiative to board up the hole. Stop procrastinating already! DO IT!
The previous owners had three teen aged boys and a television in every room. The rooms are not huge, so in an attempt to save space in the rooms their boys came up with a clever (but horribly ugly and white-trashy) solution. The decided to cut a hole in the wall of what is now Bug Boy's room into the closet of what is now Bugaboo's room. That way, the boy who used to live in Bug Boy's room could be in bed watching television, they would put it on the top shelf of Bugaboo's closet facing into Bug Boy's room.
Is that confusing? Did I explain it ok? Hope so.
Ok, back to the story: The hole is still there. Bugaboo used to be in Bug Boy's room with the cutout in his wall. We did not like him in that room because his window is directly over a very long drop to the ground and we felt it was dangerous, not to mention his room was further from ours. So a few months ago we switched Bug Boy and Bugaboo, so Bug Boy is now in the room with the hole in the wall and Bugaboo is in the room with the hole in the closet. After a few weeks in that room Bugaboo began climbing onto his dresser, breaking the baby locks and pulling the drawers out like stairs. We bought straps to bolt his dresser to the wall but decided that it would be safer just to put the dresser in the closet. It is a standard baby dresser, longer than it is tall, cut out for the changing area that we never used, cheesy wood (don't ever by a crib-to-college set, you never want the set after toddlers are done with it unless you paid $$$ for a solid oak or well made set) and stuff that I want to get rid of. Anywho, guess what? Bugaboo began climbing on the dresser to get to his fish lamp, which we had placed on the closet shelf so that he would stop ripping the plug out of the wall. We had it on the shelf and ran the cord through the hole and into Bug Boy's room to plug in. Once he began climbing up there we contemplated removing the dresser altogether and eventually moved the fish lamp out of his room, since he wouldn't go to sleep with the light on. We left the dresser intact.
At some point we knew we'd get around to drywalling the hole in since it is unsightly and strange and has outlived its usefulness. We have yet to paint (or finish with joint compound, for that matter) and knew we'd get to it when the drywall phase was being worked on, which we hope to do this spring. It just has not been a priority, like floods in our backyard and failing appliances. You know, real life got in the way in the past eighteen months. It never occurred to us that the hole would need to be boarded up SOONER rather than LATER.
We are really good at procrastinating these days. After eight years of fixing up a one hundred-year-old house, we are tired of home improvement.
We knew Bugaboo would climb up into the hole and watch Bug Boy and laugh at him, and Bug Boy would throw things at Bugaboo to get him down. We kept saying, "We need to do this next week!" Tonight became next week!
You know what happened already, don't you???? So I can stop now, 'cause you already know.
Just kidding.
After putting the boys to bed this evening we settled on the couch and I almost immediately began dozing. My back is still hurting and I am exhausted. A few minutes after they were in bed we heard some loud noises, Bug Boy's door opening and many footsteps approaching us. Bug Boy burst into the Family room and blurted out, "Mom! Dad! We have a problem!"
Bugaboo was right behind him. Completely Nekkid. No footies. No diaper. Nothing.
He jumped up and down and looked absolutely pleased as punch. Quite proud of himself, really. We did our best to stifle the hysterics we were feeling and through the hands clapped over our mouths (and tears sliding down our face in fits of laughter) we told the kids we were going back upstairs. We were actually afraid of what we would find, but thank goodness he had already produced a bowel movement today. His room was, however, covered in little puddles. Yup, his bed, two spots on the floor, his dresser and half of the clothes hanging in his closet were covered with pee. Bug Boy even helped us strip and remake the bed, clean up the pee and move the dresser out of his closet. They are now back in bed and (we hope) asleep.
Bugaboo did undress himself last evening and I heard him crying in frustration so I went to check on him. It turns out that he had stripped himself (a regular thing around here, nekkid Bugaboo at all hours of the day) and was attempting to put a diaper on himself and cried because he couldn't quite get it right. Poor kid!
Word to the wise: If you are ever faced with the decision to purchase a home that may or may not have a hole cut into the wall (though artfully framed in with trim) and have active boys with advanced motor skills or a Harry-Houdini-monkey-of-a-son or a child with autism who likes to strip nekkid and pee and climb through windows, do not buy the house. Or at least have the foresight and initiative to board up the hole. Stop procrastinating already! DO IT!
Thursday, March 08, 2007
Did I Make a Mistake?
Darling typically does not accompany us on appointments to duPont. Nope, I take all the time off to go to these things since my schedule (the stay-at-home-mom-who-does-daycare-schedule) is more flexible. Once in a while, if there is a procedure or copious quantities of blood work I ask someone to help me out. Mostly, I go it alone all day.
This Friday we have our second annual appointment with the developmental pediatrician. Bugaboo went a few months back because we were having terrible issues. The hyperactivity and feeding issues had reached an all-time high and we were desperate. We were referred to several specialists, received great feedback on the feeding issues, changed his school program and now things are much improved for him.
Since we already have a diagnosis for both boys (which helps us receive a long list of necessary services) this trip is merely a formality. Its purpose is really just to follow up and see which services are still necessary and which services we could live without. I asked Darling to accompany us this time because it is a two-to-three-hour appointment for EACH CHILD, so it is nearly impossible for me to be able to focus on the doctor and her staff with one child at a time. It is chaotic at best. Therefore, when I asked Darling if he wanted to go he agreed. I know he wants to hear what she has to say.
I explained to Darling that we needed to make sure we were on the same page on several issues. One was Bug Boy, his diagnosis and his difficulties in school. I reread his evaluation from the school and shared the information from Bug Boy's teachers that explain his control-freaky behavior, difficulty switching tasks, eloping from the room to see what is in the hall (nosey child!), his rigidness with schedules and rules and his lack of empathy with other students. Darling questioned whether or not he still needed speech and occupational therapy. When I read the scores of the tests to him (these tests do NOT lie, although others do!) he stated, "Oh. Ok." I still do not think he gets it, no matter how many things I e-mail to him, print out for him, read to him, etc. He does not think Bug Boy has any issues, just a "social and emotional delay." Uh, honey? A twenty-five percent delay in one or more areas constitutes a developmental delay. In our case, Pervasive Developmental Delay. They would have diagnosed him with Asperger's Syndrome, had it not been for the fact that he did not utter a syllable until the age of two-and-a-half. And then he never babbled, he spoke in clear, loooooong sentences. He sounded like a little professor. Never pointed, never waved bye-bye.
But, from what I understand from Darling's mother, he spoke for the first time at the same age, never played with anyone, and basically did not talk for the next ten years. When he first saw the criteria list he breathed a sigh of relief and said, "Wow. Maybe that is what is wrong with me! I meet all of this criteria!" No kidding! My sister and I have suspected it for years.
Anywho, I do not know if we are on the same page about this. I mean, he seems to agree, he does not think I am creating a mountain out of a molehill and he agrees that Bug Boy has the issues he has. I just wonder if we are going to get in there and he is going to refute everything I say. That is not his normal M.O, so I think if we agree on those points it will be fine. Afterall, I really just need this appointment as backup to keep services, since the speech teacher is hell-bent on making sure she tells me that everything Bug Boy does is "fine" and "good" but doesn't quantify anything. His classroom teachers tell me a totally different story!
As for Bugaboo, we agree on the main issues. Frustration about not being able to communicate. Sleep issues. Hyperactivity. Danger in the environment. These are your typical Autism-related issues. These are issues we have been dealing with for a while. Now, things HAVE improved with him. Since the diagnosis of his stomach issues and seizures we have had him growing by leaps and bounds. Once he began eating better he grew THREE INCHES in one year and gained almost six pounds! He does sleep better now than he ever has. He is even eloping less. The TSS at school and home have helped us improved things and his new school program works much better for him. But there is still this freight-train-tornadic-activity-whirling-dervish-thing that he does. You know, spinning, running as fast as he can, climbing, jumping, opening and closing things, and his newest behavior, pouring out coffee mugs and smashing them. Oh wait, there's more! He now also LOVES getting into the pantry closet or medicine closet (both locked, but someone inevitably leaves them open!) and finding a glass bottle (like beer from the fridge) and shaking it and opening it and FIZZZZZ!!! All over the place. This is a fun thing for mommy to clean up.
So, we are mostly on the same page with Bugaboo. Darling wants to try hyperactivity medication but I do not. We shall see what she recommends. I am not so keen on it, especially since he is already taking medications for seizures, night terrors and stomach problems. In one respect I wonder if I am giving him a fighting chance to calm down and find out what he is REALLY like? What if that is the thing that helps him the most? I still do not know how I feel about it. We know what she will tell us about Bugaboo. We already know he has autism.
Typically,when more than one child in a family has autism or developmental delays they look for a genetic component. Since several boys in our family have developmental issues and they also existed in my brothers and my husband, it is safe to say there is something genetic going on.
We've had common genetic tests (like Fragile X, which was negative) and so far nothing has popped up. The only thing we are concerned about this point is finding out about the metabolic issues they have, since the have physical side-effects from it. I am not so hung up on finding out the WHY part, just the WHAT-CAN-WE-DO-ABOUT-IT part.
So, I am a little apprehensive about bring Darling to the appointment but I am looking forward to him participating. I value his feedback and his opinions even if they are different from my own. I know that his only concern is the boys and what is best for them. I also know that he wants so much for them to succeed and reach their potentials. We just need to find out how best to help them reach it!
This Friday we have our second annual appointment with the developmental pediatrician. Bugaboo went a few months back because we were having terrible issues. The hyperactivity and feeding issues had reached an all-time high and we were desperate. We were referred to several specialists, received great feedback on the feeding issues, changed his school program and now things are much improved for him.
Since we already have a diagnosis for both boys (which helps us receive a long list of necessary services) this trip is merely a formality. Its purpose is really just to follow up and see which services are still necessary and which services we could live without. I asked Darling to accompany us this time because it is a two-to-three-hour appointment for EACH CHILD, so it is nearly impossible for me to be able to focus on the doctor and her staff with one child at a time. It is chaotic at best. Therefore, when I asked Darling if he wanted to go he agreed. I know he wants to hear what she has to say.
I explained to Darling that we needed to make sure we were on the same page on several issues. One was Bug Boy, his diagnosis and his difficulties in school. I reread his evaluation from the school and shared the information from Bug Boy's teachers that explain his control-freaky behavior, difficulty switching tasks, eloping from the room to see what is in the hall (nosey child!), his rigidness with schedules and rules and his lack of empathy with other students. Darling questioned whether or not he still needed speech and occupational therapy. When I read the scores of the tests to him (these tests do NOT lie, although others do!) he stated, "Oh. Ok." I still do not think he gets it, no matter how many things I e-mail to him, print out for him, read to him, etc. He does not think Bug Boy has any issues, just a "social and emotional delay." Uh, honey? A twenty-five percent delay in one or more areas constitutes a developmental delay. In our case, Pervasive Developmental Delay. They would have diagnosed him with Asperger's Syndrome, had it not been for the fact that he did not utter a syllable until the age of two-and-a-half. And then he never babbled, he spoke in clear, loooooong sentences. He sounded like a little professor. Never pointed, never waved bye-bye.
But, from what I understand from Darling's mother, he spoke for the first time at the same age, never played with anyone, and basically did not talk for the next ten years. When he first saw the criteria list he breathed a sigh of relief and said, "Wow. Maybe that is what is wrong with me! I meet all of this criteria!" No kidding! My sister and I have suspected it for years.
Anywho, I do not know if we are on the same page about this. I mean, he seems to agree, he does not think I am creating a mountain out of a molehill and he agrees that Bug Boy has the issues he has. I just wonder if we are going to get in there and he is going to refute everything I say. That is not his normal M.O, so I think if we agree on those points it will be fine. Afterall, I really just need this appointment as backup to keep services, since the speech teacher is hell-bent on making sure she tells me that everything Bug Boy does is "fine" and "good" but doesn't quantify anything. His classroom teachers tell me a totally different story!
As for Bugaboo, we agree on the main issues. Frustration about not being able to communicate. Sleep issues. Hyperactivity. Danger in the environment. These are your typical Autism-related issues. These are issues we have been dealing with for a while. Now, things HAVE improved with him. Since the diagnosis of his stomach issues and seizures we have had him growing by leaps and bounds. Once he began eating better he grew THREE INCHES in one year and gained almost six pounds! He does sleep better now than he ever has. He is even eloping less. The TSS at school and home have helped us improved things and his new school program works much better for him. But there is still this freight-train-tornadic-activity-whirling-dervish-thing that he does. You know, spinning, running as fast as he can, climbing, jumping, opening and closing things, and his newest behavior, pouring out coffee mugs and smashing them. Oh wait, there's more! He now also LOVES getting into the pantry closet or medicine closet (both locked, but someone inevitably leaves them open!) and finding a glass bottle (like beer from the fridge) and shaking it and opening it and FIZZZZZ!!! All over the place. This is a fun thing for mommy to clean up.
So, we are mostly on the same page with Bugaboo. Darling wants to try hyperactivity medication but I do not. We shall see what she recommends. I am not so keen on it, especially since he is already taking medications for seizures, night terrors and stomach problems. In one respect I wonder if I am giving him a fighting chance to calm down and find out what he is REALLY like? What if that is the thing that helps him the most? I still do not know how I feel about it. We know what she will tell us about Bugaboo. We already know he has autism.
Typically,when more than one child in a family has autism or developmental delays they look for a genetic component. Since several boys in our family have developmental issues and they also existed in my brothers and my husband, it is safe to say there is something genetic going on.
We've had common genetic tests (like Fragile X, which was negative) and so far nothing has popped up. The only thing we are concerned about this point is finding out about the metabolic issues they have, since the have physical side-effects from it. I am not so hung up on finding out the WHY part, just the WHAT-CAN-WE-DO-ABOUT-IT part.
So, I am a little apprehensive about bring Darling to the appointment but I am looking forward to him participating. I value his feedback and his opinions even if they are different from my own. I know that his only concern is the boys and what is best for them. I also know that he wants so much for them to succeed and reach their potentials. We just need to find out how best to help them reach it!
Monday, February 26, 2007
Bugaboo's Latest Antics
Bugaboo has had a complete personality change the past two weeks. Gone is the smiling, happy and active little boy. In his place is a miserable, screaming imp. We do not like the newer version of Bugaboo and would prefer it if the old Bugaboo came back to us. Have you seen this child?
Seriously, though, the past two weeks have been difficult for him medically. He had a wicked ear infection a few weeks ago, got an antibiotic shot and it cleared up. Then he started with horrible tummy troubles. We started on the new tummy meds, things started to clear up and the screaming began. We ended up back at the doctor with a raging ear infection, resulting in both of his ear tubes being projected out of his ear drum. With some drops he has been doing much better, the Motrin helps the rest. This weekend we chose to stop the laxative, as he was going SO often that it seemed to hurt him.
Big mistake. Since he arrived home from school today he has cried, bitten his hands, screamed, run around screaming, run around laughing, destroyed half the house and has been giving us massive drama about going to bed. We started the bedtime routine at 7:30. I am posting this at eleven and DH finally has had the last straw and is taking him for a ride. We've tried warm baths, hot compresses, rocking and pacing, cuddling, singing, feeding, drinking, he just won't settled down. He screams so much he is closing his eyes (pure exhaustion) and still screaming. Something is just not right.
I know he needs to go to the bathroom but that cannot be all that is wrong with him. Couple that with the fact that he just cannot explain how he feels and the fact that he must be frustrated being belief, and you have a recipe for disaster. This child is at his breaking point. He is angry, frustrated, moody and sad. He is not the child that I know. I am hoping that this anger will lead him to the place we need him to be. None of us can take much more! We are ALL tired and depressed about it. We just do not know what the next step is. I have prayed and prayed and cried and cried. I need answers for him.
This evening he tried to run himself a bath. I was cutting out paper dolls with my little neighbor girls (we were sitting RIGHT under the bathroom, mind you) and the water must have been running for ten minutes. Little Miss and Middle Girl asked me to print out more doll clothes so I sat down to print them and he came running into the room crying. Middle Girl kept trying to tell me he was wet and I brushed her off, my eyes still looking for paper dolls. I figured she meant like his diaper was wet or that he was playing in the sink again. She said, "No! He is REALLY wet. I mean REALLY!" I turned to look at him, noticed he was fully clothed and completely, soaking, wetter-than-a-fish wet. I also saw a trail of puddles through the kitchen so I went up to the linen closet to grab towels to dry him (and the floor) and only then did I hear the tub running, drain closed, showerhead partially on. The water was freezing cold and up to the top of the tub. I caught it just in the nick of time.
I am sitting here right now emotionally and physically drained. I am sore from rocking his thirty-six pound body. I am tired from not sleeping a full night for two straight weeks (and six straight years) and for not sleeping a wink for two nights. I am weary because I feel defeated and trodden upon. Tonight Autism is winning and I do not want to let it. I refuse to have this take over my child and change him. I want better than that for him. But I am oh so tired...Shhhh...Shhhh...
They are back. Please pray he is asleep. Please pray that he is better tomorrow. Regardless, I will be calling the doctor and staging a sit-in until someone figures out what the hell is going on.
Seriously, though, the past two weeks have been difficult for him medically. He had a wicked ear infection a few weeks ago, got an antibiotic shot and it cleared up. Then he started with horrible tummy troubles. We started on the new tummy meds, things started to clear up and the screaming began. We ended up back at the doctor with a raging ear infection, resulting in both of his ear tubes being projected out of his ear drum. With some drops he has been doing much better, the Motrin helps the rest. This weekend we chose to stop the laxative, as he was going SO often that it seemed to hurt him.
Big mistake. Since he arrived home from school today he has cried, bitten his hands, screamed, run around screaming, run around laughing, destroyed half the house and has been giving us massive drama about going to bed. We started the bedtime routine at 7:30. I am posting this at eleven and DH finally has had the last straw and is taking him for a ride. We've tried warm baths, hot compresses, rocking and pacing, cuddling, singing, feeding, drinking, he just won't settled down. He screams so much he is closing his eyes (pure exhaustion) and still screaming. Something is just not right.
I know he needs to go to the bathroom but that cannot be all that is wrong with him. Couple that with the fact that he just cannot explain how he feels and the fact that he must be frustrated being belief, and you have a recipe for disaster. This child is at his breaking point. He is angry, frustrated, moody and sad. He is not the child that I know. I am hoping that this anger will lead him to the place we need him to be. None of us can take much more! We are ALL tired and depressed about it. We just do not know what the next step is. I have prayed and prayed and cried and cried. I need answers for him.
This evening he tried to run himself a bath. I was cutting out paper dolls with my little neighbor girls (we were sitting RIGHT under the bathroom, mind you) and the water must have been running for ten minutes. Little Miss and Middle Girl asked me to print out more doll clothes so I sat down to print them and he came running into the room crying. Middle Girl kept trying to tell me he was wet and I brushed her off, my eyes still looking for paper dolls. I figured she meant like his diaper was wet or that he was playing in the sink again. She said, "No! He is REALLY wet. I mean REALLY!" I turned to look at him, noticed he was fully clothed and completely, soaking, wetter-than-a-fish wet. I also saw a trail of puddles through the kitchen so I went up to the linen closet to grab towels to dry him (and the floor) and only then did I hear the tub running, drain closed, showerhead partially on. The water was freezing cold and up to the top of the tub. I caught it just in the nick of time.
I am sitting here right now emotionally and physically drained. I am sore from rocking his thirty-six pound body. I am tired from not sleeping a full night for two straight weeks (and six straight years) and for not sleeping a wink for two nights. I am weary because I feel defeated and trodden upon. Tonight Autism is winning and I do not want to let it. I refuse to have this take over my child and change him. I want better than that for him. But I am oh so tired...Shhhh...Shhhh...
They are back. Please pray he is asleep. Please pray that he is better tomorrow. Regardless, I will be calling the doctor and staging a sit-in until someone figures out what the hell is going on.
Thank Goodness it is Monday
It sounds awful, I know. I am actually happy that Bugaboo is back in school today. I am even more overjoyed at the thought that despite the weather (which I personally do not feel is so bad, even looking at my street) there is no delayed opening and no snow day. I cringed at the thought of it last evening as the snorecasters changed their minds, from one inch to four inches to six inches to four again, and then, Oh yeah! We forgot to mention the ice, frozen rain, sleet, etc.
And to top it all off, Bugaboo had the audacity to start screaming at three am. I know he was in discomfort, he would thrash around, stick his feet in between my knees, place my hand on his heart (he loves to cuddle that way when he is ill) but just couldn't get comfy. I know for a fact I forgot to give him some Motrin and his ear drops before bed, I just could not bring myself to get up and get him anything. Darling was kind enough to do it when he heard me pleading with Bugaboo to "please go to sleep! Mommy cannot hack this anymore after ten days!" He obliged once his Daddy got the holy grail (his sippy cup). And not just ANY cup, mind you. You know that many children with Bugaboo's type of delays have to have THE cup and THE spoon and THE pair of shoes. I have learned to buy three of the same shirt or pairs of shoes in different sizes!
I had this crazy, fancy idea that since Bugaboo had ten days off, and I am a certified special education teacher, that I would spend the entire week sticking to a rigorous schedule and working his program (ha! WHAT PROGRAM!). I thought I would emphasize language, language, language. Mommy and Bugaboo would spend the entire day just reinforcing vocabulary. With Bugaboo's school mate there for the week (his mommy is a High School teacher and a single mom with no one to watch him) I thought it was the perfect opportunity to get them interacting and working on relationships. What I did NOT plan for was his belly upsets, including four days straight of constipation and then his ears exploding to the point that his tubes would pop out and bleed!
We spent the entire week cuddling. We paced while he cried in pain. We heated up his bean bag (the one mommy uses for her sinus headaches) to place on his tummy and help with the gas. We went for rides when he was beyond soothing, since the car is one of the few things he loves at any time of the day. When he did feel up to playing he would crawl around pushing his buses or would devise ways to get outside when mommy was peeing (he is a MASTER at eloping at the most inconvenient times!). He did enjoy getting his snow and rain boots out, and all of our boots for that matter, and wore the around the house. He even wore them to bed most nights! I did managed to play with him and his pal a little and I took them for looooong daily walks around town. This was my only break from seven am to seven pm everyday. One lucky night I managed to go tutor (yes, I've started again, I am so glad I did) and go to choir practice all in one night! It was wonderful to work with a student again but it solidified my belief that once I can return to work (if!) that it will not be in a classroom. I will continue tutoring but cannot bring myself to teach in a classroom again. I do not think I can spend all day with children with autism and then come home to it, too. I have to take a break from it! I cannot let autism become our entire life. I want us to have a life and then have autism. Does that make sense?
The crazy thing is that as much as I enjoy being with children and I am proud of the fact that I worked my ample posterior off to get this degree, I now know my limitations. I cannot tell you how blessed I am to have the experiences that I have had. I love the fact that I chose to go back to school (after four majors and nine years) to finish my degree. I have always had babysitting or daycare jobs. I worked my way through college with tutoring work (and Darling's support, we were married by then). I am the adult that always ends up watching everyone else's kids at parties or sitting at the kid table. I just feel called to be with children. At at time in my life where I had NO IDEAS and NO DIRECTION, I was pointed at a school and drawn to work there. It was not for the money (ain't much in this field) but for that feeling of accomplishment. The feeling that I was doing something important and that others counted on me to do my job the best was I could. I feel the same way about being the mother of my children.
Even though life has thrown me curves I know that I am doing what I am supposed to be doing. Without getting all crazy-philosophical on y'all, I will tell you that it "just fits." I cannot really explain it. I have never been more at ease or relaxed in my life. Now, yesterday I was getting Irish around these parts and had an entirely different post in mind. You know, the one where I complain about how weird my kids are and how much I hate it? I am glad I never got a chance to sit and write it, I am sure I would have deleted it today. It is not truly how I feel.
This is how I feel about our life, with or without autism:
When I become overwhelmed, Darling can sense it and heads it off by coming home early from work, taking the boys to HD or for a long ride, drawing a bath for me or just leaving me alone and getting them out of my hair. He will let me sit and play mindless arcade games online or crash on the couch and flip through my Discovery Health Shows or put up with me watching my beloved Extreme Makeover Home Edition. He knows I am addicted to caring about the plight of others and need to watch things and cry and get emotional (which I did, a few weeks ago there was a 60 minutes segment about autism, followed by a family on EMHE who have FIVE out of six children with autism, I was very emotional and hopeful after watching it!). He knows that sometimes I just need to turn into jelly and not move, speak or respond in anyway. I am going out on a limb here, but this may be part of the reason I met him and married him.
This week I have decided to dedicate to me. I haven't had a haircut since October. My eyebrows are growing in and I need them reshaped. I haven't colored my hair and the grey is showing BIG TIME. I haven't been to the gym in two weeks because Bugaboo doesn't exactly like the babysitting area (too loud) and Bug Boy kinda tolerates it. So, I have plans to eat well, exercise and sleep as much as humanly possible this week.It means sticking to a schedule and getting it done, but I will do it!
Life is good...
And to top it all off, Bugaboo had the audacity to start screaming at three am. I know he was in discomfort, he would thrash around, stick his feet in between my knees, place my hand on his heart (he loves to cuddle that way when he is ill) but just couldn't get comfy. I know for a fact I forgot to give him some Motrin and his ear drops before bed, I just could not bring myself to get up and get him anything. Darling was kind enough to do it when he heard me pleading with Bugaboo to "please go to sleep! Mommy cannot hack this anymore after ten days!" He obliged once his Daddy got the holy grail (his sippy cup). And not just ANY cup, mind you. You know that many children with Bugaboo's type of delays have to have THE cup and THE spoon and THE pair of shoes. I have learned to buy three of the same shirt or pairs of shoes in different sizes!
I had this crazy, fancy idea that since Bugaboo had ten days off, and I am a certified special education teacher, that I would spend the entire week sticking to a rigorous schedule and working his program (ha! WHAT PROGRAM!). I thought I would emphasize language, language, language. Mommy and Bugaboo would spend the entire day just reinforcing vocabulary. With Bugaboo's school mate there for the week (his mommy is a High School teacher and a single mom with no one to watch him) I thought it was the perfect opportunity to get them interacting and working on relationships. What I did NOT plan for was his belly upsets, including four days straight of constipation and then his ears exploding to the point that his tubes would pop out and bleed!
We spent the entire week cuddling. We paced while he cried in pain. We heated up his bean bag (the one mommy uses for her sinus headaches) to place on his tummy and help with the gas. We went for rides when he was beyond soothing, since the car is one of the few things he loves at any time of the day. When he did feel up to playing he would crawl around pushing his buses or would devise ways to get outside when mommy was peeing (he is a MASTER at eloping at the most inconvenient times!). He did enjoy getting his snow and rain boots out, and all of our boots for that matter, and wore the around the house. He even wore them to bed most nights! I did managed to play with him and his pal a little and I took them for looooong daily walks around town. This was my only break from seven am to seven pm everyday. One lucky night I managed to go tutor (yes, I've started again, I am so glad I did) and go to choir practice all in one night! It was wonderful to work with a student again but it solidified my belief that once I can return to work (if!) that it will not be in a classroom. I will continue tutoring but cannot bring myself to teach in a classroom again. I do not think I can spend all day with children with autism and then come home to it, too. I have to take a break from it! I cannot let autism become our entire life. I want us to have a life and then have autism. Does that make sense?
The crazy thing is that as much as I enjoy being with children and I am proud of the fact that I worked my ample posterior off to get this degree, I now know my limitations. I cannot tell you how blessed I am to have the experiences that I have had. I love the fact that I chose to go back to school (after four majors and nine years) to finish my degree. I have always had babysitting or daycare jobs. I worked my way through college with tutoring work (and Darling's support, we were married by then). I am the adult that always ends up watching everyone else's kids at parties or sitting at the kid table. I just feel called to be with children. At at time in my life where I had NO IDEAS and NO DIRECTION, I was pointed at a school and drawn to work there. It was not for the money (ain't much in this field) but for that feeling of accomplishment. The feeling that I was doing something important and that others counted on me to do my job the best was I could. I feel the same way about being the mother of my children.
Even though life has thrown me curves I know that I am doing what I am supposed to be doing. Without getting all crazy-philosophical on y'all, I will tell you that it "just fits." I cannot really explain it. I have never been more at ease or relaxed in my life. Now, yesterday I was getting Irish around these parts and had an entirely different post in mind. You know, the one where I complain about how weird my kids are and how much I hate it? I am glad I never got a chance to sit and write it, I am sure I would have deleted it today. It is not truly how I feel.
This is how I feel about our life, with or without autism:
- I am blessed by a wonderful, loving, supportive husband who puts our needs first (except when he wants to buy a car)
- I have two awesome and happy little boys who always know when to give their momma kisses!
- I am fortunate to live in a nice house in a nice neighborhood and send my children to get schools where they get the services they both need
- I cannot tell you what a blessing it is to have such a supportive and loving family. Without our siblings and parents we would be lost. Our parents may have their annoying moments, but they truly love our children and support us the best way they can.
- I am one lucky woman to have everything I need and more. This is a difficult life to lead (read:stress!) but it is the only life I have and I try to live it to the full.
- I have a healthy, nearly-fit body (I will get back to the gym today after a two-week hiatus) that enables me to go through the physically punishing part of parenting children with ASDs. The meltdowns and tantrums are not easy to manage and keeping my body happy helps.
- I am fortunate to have many friends. Friends that will listen anytime I call them. Friends that don't think I am a dolt for missing a coffee date that I helped plan because my son was up sceaming all night and my husband wanted to let me sleep because he knew I needed it more than a cup of joe! (if you can even fathom that concept!) Friends that call me and tell me when I am being an idiot. Friends who like me even though they've met me. Friends who read my blog and still like me.
When I become overwhelmed, Darling can sense it and heads it off by coming home early from work, taking the boys to HD or for a long ride, drawing a bath for me or just leaving me alone and getting them out of my hair. He will let me sit and play mindless arcade games online or crash on the couch and flip through my Discovery Health Shows or put up with me watching my beloved Extreme Makeover Home Edition. He knows I am addicted to caring about the plight of others and need to watch things and cry and get emotional (which I did, a few weeks ago there was a 60 minutes segment about autism, followed by a family on EMHE who have FIVE out of six children with autism, I was very emotional and hopeful after watching it!). He knows that sometimes I just need to turn into jelly and not move, speak or respond in anyway. I am going out on a limb here, but this may be part of the reason I met him and married him.
This week I have decided to dedicate to me. I haven't had a haircut since October. My eyebrows are growing in and I need them reshaped. I haven't colored my hair and the grey is showing BIG TIME. I haven't been to the gym in two weeks because Bugaboo doesn't exactly like the babysitting area (too loud) and Bug Boy kinda tolerates it. So, I have plans to eat well, exercise and sleep as much as humanly possible this week.It means sticking to a schedule and getting it done, but I will do it!
Life is good...
Thursday, February 15, 2007
Well-Itnentioned People
I receive several calls and E-mails a week about everything related to Autism. There are people in my life that try to make sure I hear everything that is out there, which I appreciate. There are also people in my life that think I have my head in the sand and feel they need to point out every little thing in every little report and then call me and ask me if I've read/seen/called about it. While I appreciate their thoughtfulness, it is starting to get OLD.
My Mother-in-Law never passes up an opportunity to give me information. She is the one, by the way, that called my husband one night when I was out (on purpose, so she could lecture and grill him on how we have our head in the sand, even though all along we were PRIVATELY deciding how to handle the matter and were in the process of seeing specialists and having him tested) and decided that Bugaboo had Autism, because she read a list on the Internet. He was fifteen months old at the time. She complained that he never looked at her and he screamed when she came over. Never mind that we were struggling with the realization that something was going on with our child. I can't help but feel that it was an, "I told you so!" situation. I felt like my parenting skills were being judged.
Now, she truly does dote on the kids. She lives close by and comes over when we need her. When Darling was on his recent business trip and I ended up with a stomach virus, she came over when I needed her. She has done that many times in the past. She is the one that came over as much as we needed when we were new parents, and again when I had a C-section and had a two-year-old at home.
I guess I feel uncomfortable with her passing so much along because it is usually old information that we've seen and discussed and because she almost always asked if we've tried that for Bugaboo, if we are considering it for Bugaboo or if we think we should do it for Bugaboo. Because, you know, it is that easy. Just read it in Newsweek and VOILA! Instant thousand-dollar therapy for your kid that has no scientific research and no guarantee it will work for any child. Just a bunch of doctors who say, "Hey! They want a cure! Let's give them anti-psychotic drugs and see what happens! Let's put them on funky diets and see what happens!" Sorry, call me a doubting-Thomas but I ain't trying stuff like that on my child. He is not a Guinea Pig.
Don't get me wrong. We've considered some weird things. We've done the GFCF diet (very briefly) and we've put him on vitamin supplements. We have tried essential oils (he HATED them) and certain behavior therapies. But one thing that drives me crazy is when people hear you have a problem and say, "We have a drug for that!" Remember, my Darling works in pharmaceuticals, and we know more dangers and risks than most people. There is a time and place where medication is useful and needed, but we believe very strongly that our child will not be on psychotic drugs. It is not worth the risk of added ticking, liver damage and stunted growth just to make him "more aware" of his surroundings.
That said, there are other medications that we may pursue in the future. He is only four years old! We have no way of knowing how he will change in the next year. Part of me feels that I am not giving him every opportunity available and wants to give him meds to see what will happen. The other part of me says that it isn't such a good idea, that we need to give him more time. But then again, we feel like we are running out of time! We feel like he is four and we need to DO SOMETHING!!!! What if we find out a few years from now if we just had rubbed lotion on his ears or had just made him eat popcorn once a day, that he would be talking to us. I know it sounds silly, but when you are in this position you feel like you could try anything. Then your senses kick in and you laugh at yourself for your clouded judgment. Then you pray even harder for guidance because you want God to send you on the right path.
I know there is a plan for us. Bugaboo is here to teach us something. He is here to prove the statistics wrong and to bring our family closer. He is here to teach us to fight for our needs. He is here to make us rely on one another and to love each other unconditionally. I am sure if there is more, it will be revealed to me. I've always prayed for patience...guess what? I am learning it now! Your prayers are always answered, friends. The answer isn't always the one you want.
My Mother-in-Law never passes up an opportunity to give me information. She is the one, by the way, that called my husband one night when I was out (on purpose, so she could lecture and grill him on how we have our head in the sand, even though all along we were PRIVATELY deciding how to handle the matter and were in the process of seeing specialists and having him tested) and decided that Bugaboo had Autism, because she read a list on the Internet. He was fifteen months old at the time. She complained that he never looked at her and he screamed when she came over. Never mind that we were struggling with the realization that something was going on with our child. I can't help but feel that it was an, "I told you so!" situation. I felt like my parenting skills were being judged.
Now, she truly does dote on the kids. She lives close by and comes over when we need her. When Darling was on his recent business trip and I ended up with a stomach virus, she came over when I needed her. She has done that many times in the past. She is the one that came over as much as we needed when we were new parents, and again when I had a C-section and had a two-year-old at home.
I guess I feel uncomfortable with her passing so much along because it is usually old information that we've seen and discussed and because she almost always asked if we've tried that for Bugaboo, if we are considering it for Bugaboo or if we think we should do it for Bugaboo. Because, you know, it is that easy. Just read it in Newsweek and VOILA! Instant thousand-dollar therapy for your kid that has no scientific research and no guarantee it will work for any child. Just a bunch of doctors who say, "Hey! They want a cure! Let's give them anti-psychotic drugs and see what happens! Let's put them on funky diets and see what happens!" Sorry, call me a doubting-Thomas but I ain't trying stuff like that on my child. He is not a Guinea Pig.
Don't get me wrong. We've considered some weird things. We've done the GFCF diet (very briefly) and we've put him on vitamin supplements. We have tried essential oils (he HATED them) and certain behavior therapies. But one thing that drives me crazy is when people hear you have a problem and say, "We have a drug for that!" Remember, my Darling works in pharmaceuticals, and we know more dangers and risks than most people. There is a time and place where medication is useful and needed, but we believe very strongly that our child will not be on psychotic drugs. It is not worth the risk of added ticking, liver damage and stunted growth just to make him "more aware" of his surroundings.
That said, there are other medications that we may pursue in the future. He is only four years old! We have no way of knowing how he will change in the next year. Part of me feels that I am not giving him every opportunity available and wants to give him meds to see what will happen. The other part of me says that it isn't such a good idea, that we need to give him more time. But then again, we feel like we are running out of time! We feel like he is four and we need to DO SOMETHING!!!! What if we find out a few years from now if we just had rubbed lotion on his ears or had just made him eat popcorn once a day, that he would be talking to us. I know it sounds silly, but when you are in this position you feel like you could try anything. Then your senses kick in and you laugh at yourself for your clouded judgment. Then you pray even harder for guidance because you want God to send you on the right path.
I know there is a plan for us. Bugaboo is here to teach us something. He is here to prove the statistics wrong and to bring our family closer. He is here to teach us to fight for our needs. He is here to make us rely on one another and to love each other unconditionally. I am sure if there is more, it will be revealed to me. I've always prayed for patience...guess what? I am learning it now! Your prayers are always answered, friends. The answer isn't always the one you want.
Monday, January 29, 2007
Labels
la·bel (lā'bəl) Pronunciation Key 
n.
Labels can be useful. Labels can help you find things and help you obtain other things. I like labels. They make life a little easier occasionally.
The problem with labels is that when people see a label they automatically assume things. That the label is the ONLY thing the object or person is about. That the label means something entirely different. That the label inhibits or limits expectations in someway. I have a problem with these labels.
People are afraid of labels. They do not want the label to limit them. Once in a while they just do not want to know the truth about the label. These people would be happy living in a vacuum and never stepping outside of the box. They go the same place for vacation every year. Their hair is cut exactly the same way every six weeks. They do not want to wake up tomorrow and have things different in their lives. Status Quo.
The problem with this mindset is that sometimes people NEED the labels. Certain labels can get you certain things. Sometimes you need that label to get something really awesome for your kid. And so what? IT'S JUST A WORD! IT'S JUST A LABEL!!!! That word has nothing to do with your kid. It does not mean your child won't achieve, won't succeed. It does not mean your child is bad or horrible. It is not a dirty word, just a label. Just a descriptive. Something that others use to describe what they do not know. When there is nothing to tell you they use this word. When you have this word stamped on a piece of paper it is like a golden ticket, like passing GO and collecting the coveted $200.
It really hurts me that people I love do not see that. They think that the child is just developing at his own rate. That he will grow out of it because so-and-so did. That it is just a quirky part of his personality and LOOK HOW CUTE AND SMART HE IS!!! That it will just go away. Because he isn't half as severe as your son, because everyone uses your son as the guide of development. Their son isn't THAT WORD because the talk, see? And they aren't toilet trained but he tells you when he is wet or has an accident, even if he is five and supposedly starting kindergarten in September. That he has some other more desirable disability, because even though these disorders are all related and have similar issues, the "one my kid might have is WAY better than what your kid has". I mean, because Asperger's is WAY better than Autism. ADD is WAY better than autism. Developmental Delays are WAY better than Autism. Because Autism means your kid is not worth as much. He needs pity. He needs people to feel sorry for him. To excuse his behavior. To allow him to get away with murder because it is just so sad that he doesn't understand. And why try to make him work for something or ask for it? He just doesn't understand. Poor, Poor little boy. He'll always be like this so we have to enable him. But "not my kid." "My kid" will be fine. "My kid talks, He's doing well, it will go away, he's growing out of it..". No need to see a developmental ped. No need to go to a Neuro. "I don't need answers because my head is up my arse."
Don't be afraid of the label. It is not about you. It is about your child. What does the child need? The heck with what you and your husband think! All that matters is that your child gets what he needs.
n.
- An item used to identify something or someone, as a small piece of paper or cloth attached to an article to designate its origin, owner, contents, use, or destination.
- A descriptive term; an epithet.
Labels can be useful. Labels can help you find things and help you obtain other things. I like labels. They make life a little easier occasionally.
The problem with labels is that when people see a label they automatically assume things. That the label is the ONLY thing the object or person is about. That the label means something entirely different. That the label inhibits or limits expectations in someway. I have a problem with these labels.
People are afraid of labels. They do not want the label to limit them. Once in a while they just do not want to know the truth about the label. These people would be happy living in a vacuum and never stepping outside of the box. They go the same place for vacation every year. Their hair is cut exactly the same way every six weeks. They do not want to wake up tomorrow and have things different in their lives. Status Quo.
The problem with this mindset is that sometimes people NEED the labels. Certain labels can get you certain things. Sometimes you need that label to get something really awesome for your kid. And so what? IT'S JUST A WORD! IT'S JUST A LABEL!!!! That word has nothing to do with your kid. It does not mean your child won't achieve, won't succeed. It does not mean your child is bad or horrible. It is not a dirty word, just a label. Just a descriptive. Something that others use to describe what they do not know. When there is nothing to tell you they use this word. When you have this word stamped on a piece of paper it is like a golden ticket, like passing GO and collecting the coveted $200.
It really hurts me that people I love do not see that. They think that the child is just developing at his own rate. That he will grow out of it because so-and-so did. That it is just a quirky part of his personality and LOOK HOW CUTE AND SMART HE IS!!! That it will just go away. Because he isn't half as severe as your son, because everyone uses your son as the guide of development. Their son isn't THAT WORD because the talk, see? And they aren't toilet trained but he tells you when he is wet or has an accident, even if he is five and supposedly starting kindergarten in September. That he has some other more desirable disability, because even though these disorders are all related and have similar issues, the "one my kid might have is WAY better than what your kid has". I mean, because Asperger's is WAY better than Autism. ADD is WAY better than autism. Developmental Delays are WAY better than Autism. Because Autism means your kid is not worth as much. He needs pity. He needs people to feel sorry for him. To excuse his behavior. To allow him to get away with murder because it is just so sad that he doesn't understand. And why try to make him work for something or ask for it? He just doesn't understand. Poor, Poor little boy. He'll always be like this so we have to enable him. But "not my kid." "My kid" will be fine. "My kid talks, He's doing well, it will go away, he's growing out of it..". No need to see a developmental ped. No need to go to a Neuro. "I don't need answers because my head is up my arse."
Don't be afraid of the label. It is not about you. It is about your child. What does the child need? The heck with what you and your husband think! All that matters is that your child gets what he needs.
Saturday, January 06, 2007
I was going to post something else and changed my mind
I was going to respond to a commenter's comment in the last post (hi, Lucym I'd do my nose) and elaborate on it, but instead I will use this post to discuss something that I found disturbing.
There are groups out there, groups that I have supported in the past, that are working towards research in the field of autism.
These groups are doing genetic research. Since both my boys, and several other family members, have autism, related disorders or autistic tendencies, I felt that I would need to do my part, have my boys participate and hopefully help other families.
This week I found out what they intend to do with that research.
You see, there is a movement toward research of genetic disorders and disabilities. In other words, people want to be able to get testing (possibly while pregnant) to see what their chances are of having a child with these certain disorders and disabilities. In other words, so they could possible decide to have or not to have that child if there is a positive results. In other words, terminate. (Now, don't e-mail me all mad and stuff. This is my opinion. I am not talking about extenuating circumstances here, just my own circumstances.)
Now, I have been Catholic my whole life. I am pro-choice, would never terminate a pregnancy (I mean NEVER) but I have never been one to tell others what they must do. I have always felt that it is between them and their God, and if they chose that, while I do not agree with their decision and can come up with a million reasons why they shouldn't, I have always felt that our government has no right to dictate what people should decide. While I should think most people have the intelligence to research this, the truth is that people often make a decision like that based out of fear or desperation. They listen to their boyfriends, spouses, parents, etc. Some women make that decision on their own.
My viewpoint comes from an ethical standpoint, not a Catholic one. I do not believe that anyone has the right to play God. I do not believe in capital punishment, Euthanasia or many types of medical intervention. There is only so far I believe that I (and my family) will go. I believe that there is a plan and a reason for what happens. Now, I am not saying that I won't try cancer treatment or I won't allow my child to have a life-saving operation. What I am saying is that I will not stay alive on life support if I am brain dead and do not want "heroic measures" taken after a certain amount of time. For more information, see my living will.
What I mean by that little soapbox ranting is that when you have a baby, you get what you get. You don't get to look at the blood tests and ultrasound and say, "Gee. I don't like that baby's nose. I don't like that club foot. I don't like that Autism." You deal with what you get in life. I do not believe that people should design their babies. I do not believe that people should approach it from the standpoint that they are buying an animal that must be genetically selected, like a dairy cow. By the way, as a former vegetarian, I do not believe that scientists should be genetically improving our food supply or designing animals, either. That is a different story for a different day.
OK, at the risk of alienating my entire reading audience, what I am trying to tell you is that we are totally screwing up the planet. So all five of you can run screaming from this blog NOW. But I have to tell you that the more we fark with everything the worse it gets. Don't forget that Nazi Germany was doing genetic testing as a means to select the "best" population. They killed anyone that was different from the Aryan ideal. That included disabled people, homosexuals, persons with mental disabilities and an entire race of people in the attempt to commit genocide. You know, history has a funny way of repeating itself. I feel very strongly that the more they mess with it the more we will one day regret it.
I have decided that we will not participate in the genetic research. While I am hopeful that some horrible diseases and conditions will someday receive cures, or at least, ways to treat them, I do NOT want a "cure" for what my children have. There is nothing wrong with them. They are fine. There is only something wrong with the way society perceives them. The danger now is that there are members of society who do not believe my children will ever become productive and so therefore it is acceptable to euthanize them. There are parents who kill their disabled children to, "put them out of their misery" or because, "their child was in so much pain and suffering." HOGWASH!!!!! We aren't talking about putting down a horse, here (why, by the way, I do not advocate, don't get me started). We are talking about human life. It is NOT ACCEPTABLE to kill your disabled child, nor is it acceptable to feel that they have the right to take their own lives because they are "better off."
I will get off my soapbox now. Sorry for the tangent. I promise to get back to my giddy, silly, happy and optimistic former self any minute now.
There are groups out there, groups that I have supported in the past, that are working towards research in the field of autism.
These groups are doing genetic research. Since both my boys, and several other family members, have autism, related disorders or autistic tendencies, I felt that I would need to do my part, have my boys participate and hopefully help other families.
This week I found out what they intend to do with that research.
You see, there is a movement toward research of genetic disorders and disabilities. In other words, people want to be able to get testing (possibly while pregnant) to see what their chances are of having a child with these certain disorders and disabilities. In other words, so they could possible decide to have or not to have that child if there is a positive results. In other words, terminate. (Now, don't e-mail me all mad and stuff. This is my opinion. I am not talking about extenuating circumstances here, just my own circumstances.)
Now, I have been Catholic my whole life. I am pro-choice, would never terminate a pregnancy (I mean NEVER) but I have never been one to tell others what they must do. I have always felt that it is between them and their God, and if they chose that, while I do not agree with their decision and can come up with a million reasons why they shouldn't, I have always felt that our government has no right to dictate what people should decide. While I should think most people have the intelligence to research this, the truth is that people often make a decision like that based out of fear or desperation. They listen to their boyfriends, spouses, parents, etc. Some women make that decision on their own.
My viewpoint comes from an ethical standpoint, not a Catholic one. I do not believe that anyone has the right to play God. I do not believe in capital punishment, Euthanasia or many types of medical intervention. There is only so far I believe that I (and my family) will go. I believe that there is a plan and a reason for what happens. Now, I am not saying that I won't try cancer treatment or I won't allow my child to have a life-saving operation. What I am saying is that I will not stay alive on life support if I am brain dead and do not want "heroic measures" taken after a certain amount of time. For more information, see my living will.
What I mean by that little soapbox ranting is that when you have a baby, you get what you get. You don't get to look at the blood tests and ultrasound and say, "Gee. I don't like that baby's nose. I don't like that club foot. I don't like that Autism." You deal with what you get in life. I do not believe that people should design their babies. I do not believe that people should approach it from the standpoint that they are buying an animal that must be genetically selected, like a dairy cow. By the way, as a former vegetarian, I do not believe that scientists should be genetically improving our food supply or designing animals, either. That is a different story for a different day.
OK, at the risk of alienating my entire reading audience, what I am trying to tell you is that we are totally screwing up the planet. So all five of you can run screaming from this blog NOW. But I have to tell you that the more we fark with everything the worse it gets. Don't forget that Nazi Germany was doing genetic testing as a means to select the "best" population. They killed anyone that was different from the Aryan ideal. That included disabled people, homosexuals, persons with mental disabilities and an entire race of people in the attempt to commit genocide. You know, history has a funny way of repeating itself. I feel very strongly that the more they mess with it the more we will one day regret it.
I have decided that we will not participate in the genetic research. While I am hopeful that some horrible diseases and conditions will someday receive cures, or at least, ways to treat them, I do NOT want a "cure" for what my children have. There is nothing wrong with them. They are fine. There is only something wrong with the way society perceives them. The danger now is that there are members of society who do not believe my children will ever become productive and so therefore it is acceptable to euthanize them. There are parents who kill their disabled children to, "put them out of their misery" or because, "their child was in so much pain and suffering." HOGWASH!!!!! We aren't talking about putting down a horse, here (why, by the way, I do not advocate, don't get me started). We are talking about human life. It is NOT ACCEPTABLE to kill your disabled child, nor is it acceptable to feel that they have the right to take their own lives because they are "better off."
I will get off my soapbox now. Sorry for the tangent. I promise to get back to my giddy, silly, happy and optimistic former self any minute now.
Sunday, July 09, 2006
The confusing world of Autism
My head is spinning and I don't know which way to turn.
There are so many choices! TOO MANY CHOICES! I just don't know what to do. I have been reading and researching treatments, opinions, medications, behavior techniques, diets and the like for nearly two years. I still have not made any decisions. I cannot sort out what I have learned. I am afraid to try the wrong thing and too scared to sit back and lose more time.
For instance, the special diets (DAN! GFCF): Everything I have tried so far has not worked. He still gets belly aches, none of the tests are pointing to allergies or hernia, he doesn't have polyps and his bowels look fine. His behavior did not improve on or off of a diet. I tried some vitamin therapy and some detox. I felt like a fool after a year when nothing changed. In fact, he STOPPED talking. I have taken him to special docs and such for a while, no improvement. He has been seeing a chiro for three years, and although he enjoys it, it isn't going anywhere.
I know I am not buying the Mercury thing. I have been reading so much about it and it just doesn't make sense. If Mercury is the cause, why is it that my friends who do NOT vaccinate still have children with Autism? And, why is it that some kids who do chelation don't improve? I just don't think this is the route I want to go. I am not sure it is something that needs to be cured.
Neurodiversity: These people have a great mindset. Accept the kid the way they are. But is sitting back and letting things happen naturally going to make him fall so far behind we will never reach him? I am afraid to find out! I want to just accept him and move along, but it is so scary and surreal.
Behavior modification: Do his behaviors need to be changed or suppressed? Is it so bad that he flaps his hands and jumps up and down? Ok, the destructive stuff has to go (it is getting expensive) but do I need to do intense therapy with him 30+ hours a week, ignore the rest of the family and home and hope he improves?
Floortime: Sounds good on paper. I have read tons on it. I want to do the training ($$, as usual) but Darling isn't 100% convinced. But, is it too close to behavioral interventions? Is changing his behavior wrong?
Cure Autism Now: They have a good message, great research, very vocal, very involved. I signed up to do the walk and field a team. I even told my family about it. But now I am not certain I want to do it. I am not sure that Autism is something that needs to be cured, or if it can be cured. Call me a skeptic. I admit it. But I cannot support them if they want me to raise money for them so that they can do another study on mercury, thimerisol, etc. I know they do so much more, but I am having a very tough time deciding on this one.
Autism Society of America: They are coming across kinda negative to me. They keep talking about how hard it is, how it is torture, how difficult it is for the kids. Like it is a disease. Like it makes my sons' lives miserable. I will admit it, it is not tea and cakes on a daily basis. But my kids are HAPPY and healthy and love. Therefore they are WORTH having! I don't think of them as an epidemic or a mistake. I think of them as an expression of Darling and my love. And a gift from God (hence Bugaboo's name). That may not be their intention, but that is how I took it.
You see, most of the groups out there make you feel like you have to do tons of intervention, therapy, meds, mods, etc. "Your kids aren't normal. Your kids aren't typical. They need to be changed, they need help, they are miserable. " I don't feel that way! I want them to be happy and loved and to succeed the best way they can. They are loved by us and God, unconditionally. So why does everyone want them to be "OK?" Aren't they ok?
As you can see, I am having some very conflicting thoughts this weekend. Could be the "AF" hormones, could be sleep deprivation. Could also be me reading into things too much, and thinking too much. Bug Boy told us last night that his brain goes so fast sometimes it makes him want to scream. I totally know what he means. And I know where he gets it!! It is difficult to make a decision when all of these thoughts are swirling around inside my brain like a cyclone.
I think I should go to bed and lay off of the caffeine for a few days...
UPDATE:
I wrote that post last night before I had any sleep. It has been a stressful week due to little sleep and Bugaboo's health issues. He has a nasty cold and feels lousy and keeps waking up at night. Now, I have been used to waking up several times a night, but then he spoiled me and started sleeping through. I don't know which I prefer!
So, I am feeling better. Still confused, not so overwhelmed. But still need to lay off of the caffeine.
There are so many choices! TOO MANY CHOICES! I just don't know what to do. I have been reading and researching treatments, opinions, medications, behavior techniques, diets and the like for nearly two years. I still have not made any decisions. I cannot sort out what I have learned. I am afraid to try the wrong thing and too scared to sit back and lose more time.
For instance, the special diets (DAN! GFCF): Everything I have tried so far has not worked. He still gets belly aches, none of the tests are pointing to allergies or hernia, he doesn't have polyps and his bowels look fine. His behavior did not improve on or off of a diet. I tried some vitamin therapy and some detox. I felt like a fool after a year when nothing changed. In fact, he STOPPED talking. I have taken him to special docs and such for a while, no improvement. He has been seeing a chiro for three years, and although he enjoys it, it isn't going anywhere.
I know I am not buying the Mercury thing. I have been reading so much about it and it just doesn't make sense. If Mercury is the cause, why is it that my friends who do NOT vaccinate still have children with Autism? And, why is it that some kids who do chelation don't improve? I just don't think this is the route I want to go. I am not sure it is something that needs to be cured.
Neurodiversity: These people have a great mindset. Accept the kid the way they are. But is sitting back and letting things happen naturally going to make him fall so far behind we will never reach him? I am afraid to find out! I want to just accept him and move along, but it is so scary and surreal.
Behavior modification: Do his behaviors need to be changed or suppressed? Is it so bad that he flaps his hands and jumps up and down? Ok, the destructive stuff has to go (it is getting expensive) but do I need to do intense therapy with him 30+ hours a week, ignore the rest of the family and home and hope he improves?
Floortime: Sounds good on paper. I have read tons on it. I want to do the training ($$, as usual) but Darling isn't 100% convinced. But, is it too close to behavioral interventions? Is changing his behavior wrong?
Cure Autism Now: They have a good message, great research, very vocal, very involved. I signed up to do the walk and field a team. I even told my family about it. But now I am not certain I want to do it. I am not sure that Autism is something that needs to be cured, or if it can be cured. Call me a skeptic. I admit it. But I cannot support them if they want me to raise money for them so that they can do another study on mercury, thimerisol, etc. I know they do so much more, but I am having a very tough time deciding on this one.
Autism Society of America: They are coming across kinda negative to me. They keep talking about how hard it is, how it is torture, how difficult it is for the kids. Like it is a disease. Like it makes my sons' lives miserable. I will admit it, it is not tea and cakes on a daily basis. But my kids are HAPPY and healthy and love. Therefore they are WORTH having! I don't think of them as an epidemic or a mistake. I think of them as an expression of Darling and my love. And a gift from God (hence Bugaboo's name). That may not be their intention, but that is how I took it.
You see, most of the groups out there make you feel like you have to do tons of intervention, therapy, meds, mods, etc. "Your kids aren't normal. Your kids aren't typical. They need to be changed, they need help, they are miserable. " I don't feel that way! I want them to be happy and loved and to succeed the best way they can. They are loved by us and God, unconditionally. So why does everyone want them to be "OK?" Aren't they ok?
As you can see, I am having some very conflicting thoughts this weekend. Could be the "AF" hormones, could be sleep deprivation. Could also be me reading into things too much, and thinking too much. Bug Boy told us last night that his brain goes so fast sometimes it makes him want to scream. I totally know what he means. And I know where he gets it!! It is difficult to make a decision when all of these thoughts are swirling around inside my brain like a cyclone.
I think I should go to bed and lay off of the caffeine for a few days...
UPDATE:
I wrote that post last night before I had any sleep. It has been a stressful week due to little sleep and Bugaboo's health issues. He has a nasty cold and feels lousy and keeps waking up at night. Now, I have been used to waking up several times a night, but then he spoiled me and started sleeping through. I don't know which I prefer!
So, I am feeling better. Still confused, not so overwhelmed. But still need to lay off of the caffeine.
Tuesday, April 18, 2006
Yet another article...
Oh no! There has been another Autism article in the paper, I know that everyone and their uncle will send me a copy of it, call me and tell me about it, etc. I happen to know (well, know of) the particlular family that participated in the article. I think these types of articles can help people demand better treatment for their children, but I also think they can be dangerous and give people false hope.
And then there is the guilt factor. Guilt that I am not draining my savings to pay for more intensive therapy. Guilt that I am sending him to a county program, when it seems like the people who are successful have sued the county to get individual services. I do agree that the more individual the services, the more progress can be made. But how do you work on social skills with a kid who doesn't ever get to be around other kids? It is a catch-22, to be sure.
But the worse guilt I have is hearing about how many people do chelation and it helps their child immensely, and I want nothing to do with it. I hear too many horror stories. Might just be media sensationalism, but I am not taking the chance with my kid. Bugaboo is happy, loved and functions ok. He isn't a lab rat, he isn't here to be cured. Part of me wonders if I should just accept him the way he is and stop trying to find things to cure him. God made him the way he is, after all.
But then the little voice in my head says, "NO! He is worth more than that! He has more potential than that! Don't let him slip away!" I can look into his eyes, and hear his little voice tell me not to give up on him. And I don't want to.
The Autism World can be so political. There are many camps, many treatments, many people who claim that XYZ treatment will help/cure/alter your child. They make you feel so guilty, like a bad parent. Like up until this point you have done something wrong! Either you aren't training him appropriately, or you aren't feeding him right, or you haven't done this behavior mod, or you haven't taken him for $100 an hour therapy for intensive OT. Most of which can be done IN YOUR OWN HOME. And then I have to consider his diagnosis of severe ADHD (on top of the Autism) and wonder if by denying him medications to control his out-of-control brain, I am denying him the possibility of looking into my eyes, pointing to a picture or saying his ABCs.
The only thing that resonates with me so far is Floortime. It is a model developed by Dr. Stanley Greenspan and others. It works with a child in their natural environment, playing with their toys, with their parents. It is very intense, but you can go to trainings (which cost about $250, but the cheapest, by far!). And, it doesn't involved doing anything special except turning off the TV or computer and spending quality time with your kid. Not that I don't do that, but I think I can change the way I interact with him and get more affect out of him. And Bug Boy is doing so well with that kind of interaction. I don't know if he is "growing out of PDD" or just improving on his skills, but he is set to go to a typical Kindergarten next year, with minimal support. That is progress! Do I think Bugaboo with be ready for that in two years? I don't know, but I am not going to quit trying. He has already come so far!
And then there is the guilt factor. Guilt that I am not draining my savings to pay for more intensive therapy. Guilt that I am sending him to a county program, when it seems like the people who are successful have sued the county to get individual services. I do agree that the more individual the services, the more progress can be made. But how do you work on social skills with a kid who doesn't ever get to be around other kids? It is a catch-22, to be sure.
But the worse guilt I have is hearing about how many people do chelation and it helps their child immensely, and I want nothing to do with it. I hear too many horror stories. Might just be media sensationalism, but I am not taking the chance with my kid. Bugaboo is happy, loved and functions ok. He isn't a lab rat, he isn't here to be cured. Part of me wonders if I should just accept him the way he is and stop trying to find things to cure him. God made him the way he is, after all.
But then the little voice in my head says, "NO! He is worth more than that! He has more potential than that! Don't let him slip away!" I can look into his eyes, and hear his little voice tell me not to give up on him. And I don't want to.
The Autism World can be so political. There are many camps, many treatments, many people who claim that XYZ treatment will help/cure/alter your child. They make you feel so guilty, like a bad parent. Like up until this point you have done something wrong! Either you aren't training him appropriately, or you aren't feeding him right, or you haven't done this behavior mod, or you haven't taken him for $100 an hour therapy for intensive OT. Most of which can be done IN YOUR OWN HOME. And then I have to consider his diagnosis of severe ADHD (on top of the Autism) and wonder if by denying him medications to control his out-of-control brain, I am denying him the possibility of looking into my eyes, pointing to a picture or saying his ABCs.
The only thing that resonates with me so far is Floortime. It is a model developed by Dr. Stanley Greenspan and others. It works with a child in their natural environment, playing with their toys, with their parents. It is very intense, but you can go to trainings (which cost about $250, but the cheapest, by far!). And, it doesn't involved doing anything special except turning off the TV or computer and spending quality time with your kid. Not that I don't do that, but I think I can change the way I interact with him and get more affect out of him. And Bug Boy is doing so well with that kind of interaction. I don't know if he is "growing out of PDD" or just improving on his skills, but he is set to go to a typical Kindergarten next year, with minimal support. That is progress! Do I think Bugaboo with be ready for that in two years? I don't know, but I am not going to quit trying. He has already come so far!
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