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!