God truly is in control. I know this, but it doesn't stop me from worrying, from trying to help things along, from wondering how on earth I'm going to help my baby. Really I need to just let go and let God do His work. He knows my little girl better than I do and He knows what she needs. I worried the whole way down to the developmental clinic how I was going to make this new doctor see what we see at home, how on earth I could possibly explain exactly how crazy Hannah's meltdowns can be without sounding over dramatic and like a crazy mother while my child sat perfectly content to read a book or write with her crayons. I wondered if this new doctor would think, like so many other (well meaning I'm sure) people have told us, that we were just over reacting because we were first time parents. I wondered if I would drive away angry, frustrated, confused, and feeling like I really was crazy.
I should not have worried. In the 2 1/2 hours we met with the developmental pediatrician Hannah displayed the entire range of her behaviors from the scary to the brilliant (the good, the bad, and the ugly as I like to think of it). I need not have even brought my laptop in. When the doctor came into the room Hannah was busy lining up her crayons, balancing them on end in a perfectly straight line and did not even look up to see who had come in the door (this after having literally asked me 50 + in the 15 minutes we had been waiting in the room if the new doctor was coming now!). She kept at her lining up and realigning for a few more minutes and then decided to grace us with her presence. Hannah conversed with the doctor like a mini adult discussing gymnastics, her new Little People house she got for Christmas, and her horses, but was unable to articulate (or maybe even imagine) what she might possibly do with the Little People in the house (besides line them up and set them up in different situations, but then she didn't even tell her that). Next she quickly and correctly identified the colors of all of the crayons she had lined up, as well as the rest of the crayons in her bag (why stop at just a few?). This entire time she had been sitting on a rolling chair that also swiveled and had been twisting the chair (and herself of course) from side to side in a constant motion except for while she paused to place a crayon carefully on it's end in line. Shortly after identifying her colors Hannah twisted a little two hard in her chair and bumped the table the crayons were lined up on causing them all to fall over and some of them to roll to the floor. At this point she totally flipped out and had a major meltdown. She threw herself to the ground screaming and began trying to bang her head on the tiled floor. I won't bore you with the gory details, but suffice it to say that the doctor was able to witness a brilliant example of a typical meltdown and the head banging behavior we had been concerned about (neither of which I had ANY video of!). Hannah eventually recovered with some deep pressure bear hugs and rocking and went on to read a book to the doctor, write her name, rhyme some words, and cooperate fully in her physical examination. Then, when it was time for the doctor and I to discuss the concerns Kyle and I have, Hannah became bored and cranky and had several typical toddler tantrums when she didn't get her way or receive the attention she wanted which was a nice contrast to the unprovoked meltdown of earlier in the appointment. She also displayed some sensory seeking hitting, avoidance of confrontation (she actually tried to run out of the room instead of look me in the eye after I had said No! to her), and chewing and biting on inappropriate objects. Though it was a LONG session and not what I would normally consider a good day by any standards, I was so grateful that the doctor was able to see so clearly what I was going to try to explain.
Eventually the doctor explained her observations and gave her recommendations. She said that first off Hannah needs to meet with a psychologist for a diagnostic assessment. She explained that in cases like Hannah she makes a joint diagnosis with the psychologist after the evaluation. She said that in her opinion she strongly feels that Hannah will be diagnosed with Asperger's Syndrome and that we will find that she also has a VERY high IQ. The final and official diagnosis will not come until after the psych eval, but for now at least we know we aren't crazy. She also conferred that Hannah has definite sensory issues and that her sleep difficulties are not normal. Apparently her tonsils and adenoids are enlarged and could be causing some sleep apnea which could be exacerbating some of the problems Hannah already deals with. She recommended a sleep study and then a visit with an ENT specialist to determine what to do in that department. She also said that if we can't get Hannah in to see the OT that we want to do her sensory evaluation for formal diagnosis in a reasonable amount of time then we could go back to Riley and their clinic would do the sensory eval as well. So, it looks as if we will be making several more trips back and for to Indy in the coming months for specialist appointments, evaluations, and follow up appointments, but for now it just feels good to get the ball rolling.
As I drove home from the appointment and even now as I type this post, I am still processing this all. Though we've had suspicions of Asperger's and knew that something wasn't quite right it still comes as a bit of a shock. Even though a diagnosis doesn't change any of the day to day challenges and gifts Hannah has, doesn't change who she is, it still smarts a little bit to have someone lay it out there in front of you so matter of factly like that. To say, yes your daughter does have a problem and she will most likely always struggle with it. No parent wants to hear that even if they already know it's true. Without a diagnosis there is still hope that it will all one day magically resolve itself. Then again, with a diagnosis there is hope too I am starting to realize. There is hope that she will have access to services and supports along the way that will help her to become a successful and thriving adult one day who can argue the pants off of the best trial lawyer in the country! :) I'm sure I'll go through struggles and doubts and probably some self pity as we move along this path, but for now I think I can go to bed relieved that God has my little girl tucked safe in his arms and that everything will work out according to His plan.
5 comments:
Thanks for sharing your journey! You are in our prayers!
Yep, I understand what you are going through here. Hannah may get a label like Asperger's, but that doesn't change that all I see when I read about her is a remarkable young girl with an incredible future.
You do have a good attitude. Keep at it!
Natalie-I can only imagine how bittersweet this must be for you. What relief to finally feel validated that you aren't crazy, and yet it must be mixed with sadness. I know that Hannah is SUCH a blessing to your family and that your positive attitude and faith will get you through this latest development. Hannah is SO lucky to have you as her mom and I know she will continue to provide you with true joy as you navigate through. Keep up the good work!
Thanks for all the prayers and well wishes. I feel vastly unqualified for this job, but I keep reminding myself that God is in control and with all of your prayers, surely He won't let me screw up Hannah too badly by my lack of competence!
Natalie
Hannah is such an amazing child, and you're such an amazing Mommy. Like Angela said, thanks for sharing your journey.
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