A Beautiful Mind

OK, back some more serious stuff.

Today was one of those days that I think I will always remember, and this time for a good reason.

But first I need to begin at the beginning. Or at least update you on what transpired in the months since I wrote the e-mails in the previous posts.

So we have an autistic daughter. Well, not really full-blown autistic, but I find it easier to tell people she's autistic than to explain PDD-NOS. Most people know what autism is, though in a somewhat stereotypical, Hollywood depicted kind of way. There are a few things that are the crux of the problem for Corinne. Namely she has a really hard time coping and self regulating. I read a book that described it so well as "life just overwhelms her". She's bombarded by sensory input; we all are, but most of us can focus on what is important and tune the rest out. Corinne is aware of every sound she hears in the room and outside. She sees the trees moving. She feels the chair she's sitting in and every itch on her body. On top of this she has what is called poor motor planning. She can't easily get her body to do what she wants it to do. She has to be taught and then practice things that come naturally to everyone else, things like jumping and climbing, playing with toys, manipulating small objects. Because she doesn't have good control of her body she has no confidence and gets easily stressed out. She spends a lot of time in defensive mode, always worried that she can't handle what is coming. Imagine, then, how scary other kids are for her. Loud and fast, they take things, they can knock her down; they're just unpredictable. Corinne likes predictability and likes to be in control. She likes the familiar and the ordered. Lining up toys is soothing to her. Looking at books allows her to escape. Knowing exactly what to expect is comforting. Strangers are intimidating. New situations are scary.
The problems with her motor planning have been responsible for a number of challenges for Corinne. The biggest and most glaring, the one that raised the biggest red flag for her pediatrician, was a significant speech delay. She never really babbled as a baby, beyond saying "Bah", which is a sound that if I never hear it again, it will be too soon! She picked up Momma and then Dadda and not much else. Her peers were speaking in full sentences and Corinne just emitted a series of agitated whiny sounds like "eh eh". However, she always seemed to have a good understanding of what people said to her, beyond what was typical for her age level.

You can see why she was such an unhappy baby. Easily scared and stressed, unable to trust her own body and lacking in confidence, understanding but being unable to communicate, it must have been hell for her.

We taught her some sign language and that helped. She built up quite a vocabulary of words to help her get what she needed: more, all done, eat, drink, help, play, and a bunch of random animals. As the year went on we added more and more hours of Early Intervention services and added a second agency to help with her treatment. She ultimately had 20 hours of therapy, including speech, occupational therapy, horseback riding, aquatherapy (swimming), and something called DIR/Floortime, which is "intensive animated play where the adult follows the child's lead but uses high emotion and other techniques to obtain the child's social attention. The goal is to keep the child engaged with the adult in more sustained and complex ways, and be able to generalize these skills to other adult and eventually children." We refer to this collective group of therapists as "Team Corinne". There have been close to a dozen of them, and I mean it from the bottom of my heart when I say that these people saved us. We'll never know how Corinne may have turned out without all the hours of patient work these women gave her, but I know how she did turn out with it. I'm thrilled to be able to report that now, at 2 years and 9 months old, Corinne is a different child. In the last 2 months she broke through whatever barrier was in the way of her talking, and the phrase that has been used to describe this is an "explosion of speech". She went from a dozen or less words to full sentences in a period of less than two weeks. And with the speech came the confidence in herself. And the ability to say why she was scared or unhappy. And the ability to tell us what she wants or doesn't like. She's discovered the sheer pleasure in interacting with people, how much fun it can be and how satisfying to be understood. And she is forming relationships with the adults in her life, like her therapists and her grandparents. She is excited to see them and she remembers things about them that were fun for her. Do I need to tell you what this feels like for Pete and I? I doubt I do. Let me just say that a year ago we feared she may never speak or form meaningful relationships. We thought we'd never be able to do what others families could do: camping trips, amusement parks, birthday parties. And now we can.

Is she cured? No, definitely not. She still doesn't like other kids. She's really hard to understand (we call her language "Corinnese"). She only makes eye contact maybe 30% of the time and she still gets upset pretty easily. But she's happy and that's what we wanted more than anything. She a happy, silly, unbelievably smart little girl. She's exactly what we dreamed of in a child and so much more.

So why was today so special? Sorry- a little more background first. Basically what happens in three months when Corinne turns three is her services with Early Intervention end, and the city school system takes over. Preparing for this is called "Transitioning", which involves meetings with her current and future providers, forms to fill out, tours to take, evaluations to be done, and ultimately an IEP, or Individual Education Plan. This will spell out exactly which services she will receive, how often, where, and with whom. Because Corinne has a diagnosis "on the spectrum", she needs as many hours a week of therapy services as possible. She will most likely be enrolled in a full-day, integrated (half "typical" kids and half special needs) preschool program at the local elementary school. The fact that she will be going to school 6 hours a day, four days a week is a topic for a future post and one I'm sure I will be freaking out about as September draws nearer, so I won't get into that right now.

So today was a combination speech and general cognitive/ academic level evaluation done by a special ed teacher and a speech therapist. I was nervous about this, not sure if I'd be able to be in the room or not, not sure if Corinne would be in the mood to cooperate or not, not sure if the evaluators would get an accurate picture of this complex little girl of ours. I needn't have worried.

The testing began in a small office of cubicles. I mention this because it could have been a disaster. So many distractions, voices of other kids close by, a strange new environment, the uncertainty of what was to happen to her; all potentially troublesome things for a kid with sensory processing issues.

They started with a lot of the basics. There were so many different things I can barely remember them all. They had her point to colors, shapes, letters, numbers, and pictures. She drew lines and circles, stacked blocks, sorted like-things, imitated fine motor skills and gross motor sequences. They had her point to pictures to determine if she knew opposites and genders and pronouns and animals and big vs. little, up vs. down, under, on top of, behind and around. They literally tag teamed her with question after question, picture after picture, list after list. It was tiring just to watch and she did great. This was not her first evaluation but it was the most intensive and thorough. Halfway through it they told me that they had only been planning to do one particular test but they decided to do additional tests because she was more advanced than they had anticipated. Much more. The test is grouped by skills appropriate to age level. When a child misses I think it was seven in a row, it is determined that that is the age level that the child is functioning at. For example, maybe at a 3 year old level for gross motor skills but at a two year old level for speech. Well with Corinne they finally stopped at a five year old level for cognitive skills, and that was only because she was getting tired.

I was on cloud nine leaving the evaluation. It was all I could do to wait until we got home to call dadda. Talk about some serious parental bragging rights! We had always suspected that she was smart but let's face it, every parent thinks their kid is smart. Well, now we know for sure. Our child is smart, like really smart. It's just so exciting, after all we've gone through, to be able to look forward to what the future will bring. We still don't know just how smart she is, but now we can look forward to her being able to read and write and do well in school. And that can lead to her ability to have a job and a meaningful, independent life. It's more than we ever could have hoped for. I am so proud of my special little sweet pea.