Wednesday, April 4, 2012

The dreaded A word

Stress and the Tripped Up Family seem to go together like peas and carrots, as Forest Gump would say. It's right up there in the header, in the mathematical problem we use to describe us. (3 cats + 1 teen girl + ggg toddler triplets + 1 computer geek dad + 1 writer mom) When you add all of our variables up, even on our best days, we end up with a medium to high stress quotient. And now we just walked some more stressors right in through the front door, or perhaps we just better defined ones that have been here for a while.

I've been tipping my hand on Twitter with this but haven't blogged about it because we didn't have any official statement. Now we do. Yes, the A word is part of our world. Can you guess it? Since April is Autism Awareness Month, it's probably not a huge leap to go to the word autism. Yes, you'd be right with that thought, although sometimes I think it can also be Anger, Anxiety, Apprehension, Alarm, Aversion and many other adjectives describing the mixed emotions of getting an autism diagnosis.

Since the triplets were about 15 months old, I've had concerns about their speech development and actually other potential delays. Ultimately we contacted the Early Intervention group in our state to see if there were delays. Indeed there were. We began the suggested programs for them at 19 months. We've been actively involved with the Early Childhood Special Education programs in our public school district ever since and our entry point with all of this was the label Early Childhood Developmental Delay for all three.

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The dreaded A word has always been in the back of my head. We mentioned it here and there to various professionals connected to our kids, but until recently, were always told things like: "they're triplets," "they were preemies," "they probably have their own language," "they'll catch up," "every child progresses at their own rate" etc. If only it were that easy. Finally, I saw an article with a list of autism symptoms in bullet points, and I realized that our Princess triplet had some levels of every single one. Additionally, our Angel triplet also had some of the symptoms. My head was filled with raging questions: Why do we assume they're exempt from autism again? Why is that word never brought up by any of the professionals working with us again? This led Tripped Up Daddy and me into a new season of more dedicated advocacy for our children, which brought us to an autism center where we received a provisional Autism Spectrum Disorder diagnosis for both Princess and Angel triplets.

So there it is, the A word. There really wasn't any shock connected with it. In some ways, there was relief. At last, I could acknowledge there was something going on beyond the "they're triplets" and "they aren't parented the same way as singletons are." (A fancy way of saying - you're not a great parent, but you have triplets so we can't really fault you too much) Finally, I could cut myself a break and realize it wasn't because it's impossible to parent multiples utilizing the best practice techniques that child educators, pediatricians, child psychologists and speech pathologists recommend for singletons. I could stop blaming myself for the lack of one-on-one time, for too much PBS or other TV, for not providing enough freedom for them earlier to encourage exploration, and on and on and on.(Oh by the way, if there are best practice parenting techniques for parenting multiples, somebody send me the list or link, I'm afraid I've lost my copy).

In mid February we changed the preschool for Angel and Princess triplets to one where they will have more intensive services. We're already seeing improvements in regard to an interest in socialization and attempts at communication. These are positive signs. Our little girls need additional intensive therapy that our insurance currently will not cover, but because of some changes in Michigan law, we expect it to be covered in January. We hope we can provide enough early intervention through school and at home in the meantime so Angel and Princess will have the best possible outcomes.

The dreaded A word in our world comes with a lot of baggage. I'm realizing lately that I can choose for that A word to be Awesome and Amazing as I look at the progress my daughters make each day. For they do make progress and because of how much work each step takes, we have the opportunity to celebrate much more often than you might with a neurotypical child. (NT for short - you see, I'm already learning a whole new language with this diagnosis.)

I have much to learn about autism itself and how it presents in each of my daughters. You know the old saying "if you've seen one, you've seen them all?" Autism is not like that. If you've met a person with autism, you can say, "I've met one person with autism and seen it manifested in one way." The recent statistics from the CDC say 1 in 88 children have autism - 1 in 252 girls more specifically. Each of those cases is incredibly unique - just as unique as our Princess is from Angel.

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