Friday, April 12, 2013

I don't hate your neurotypical child

Really, I don't. Hate him or her, I mean.

Is it HATE? Is it ENVY? Does it even matter?
Have I lost you already with the word neurotypical? I'm sorry, it's all part of my post diagnosis vocabulary, let's call it. Basically it means a person who doesn't have atypical neurology according to Wikipedia. I know I've been incredibly quiet over here since the diagnosis, so you might need a quick refresher on the Tripped Up Family and our unique challenges with our all girl triplets. We've struggled with speech delays and milestone delays with our triplets, noticed by us since they were about a year old and by 18 months old we sought help through our state programming. As we continued to work through the delays and other interesting behavior, it became clear that we were probably dealing with more than just the "they're triplets" and "they were preemies" excuses could account for. We pushed hard for answers and now we know that two of our triplets are on the autism spectrum with a diagnosis of classic autism. Today at 4-1/2 years old, Angel and Princess triplets are still mostly non-verbal and show plenty of stereotypical autistic behaviors. You can't miss the diagnosis anymore at all. Meanwhile their neurotypical triplet sister Sunshine has overcome her speech delays (the triplet & preemie explanation is very plausible here) and will be joining a general education class by this fall if all goes well.

Okay, consider yourself caught up.

Let's get back to hatred, or lack thereof. Hatred of neurotypical children, specifically yours. Only I don't, hate, I mean. Right, I don't hate your neurotypical child, after all, I have two neurotypical children of my own right here in the Tripped Up Castle and I love them immensely. I don't hate my kids with autism either, although I think I can safely say I do hate the autism itself. Sorry if I offended anyone in the autism community with that, but there it is, that's the fact.

I hate how every day I see kids learn and grow and say the cutest things and make everyone smile, while two of my triplets struggle with the simplest of communication, like saying "Mommy" or "Daddy" or "I want drink."

I don't begrudge the success of your neurotypical children - I celebrate them! Just like I celebrate the successes of Lotte and Sunshine triplet. I will admit, however, that in every celebration of success there's an inner struggle for me as I wonder, "will my Princess and Angel triplets ever reach that goal or one similar to it?" Will I ever just smile in wonderment with them as they show me some amazing feat they've accomplished? And the answer comes, I just don't know.

According to one of the teachers at the girls' school, a typically developing child has to repeat a skill 1 to 200 times before it becomes a learned behavior. With special needs kids, you can ramp that high number up to 2000 repetitions. And the kicker? We don't know exactly what or when our kids will learn or what or when they'll actually retain. We don't know what skills may always remain elusive for them. We live our lives trying to presume competence, trying to have high enough expectations, knowing that if we don't, then we aren't helping them to reach their full potential. It's a constant struggle, and you feel like you can never let up, otherwise you'll fail your child forever. Trust me, as a parent with special needs kids, I've become an expert at piling up the guilt on myself, been doing it for years now.

Sometimes I really want to let go of the pressure and the strain and just enjoy the marvelous wonder of my children - each and every one of them. I find I can easily do this with Lotte and Sunshine, but it's almost as if I'm afraid to let go with Princess or Angel. It all comes down to a fear of losing ground in the basics of what we have right now. The good stuff that is happening. If I'm not constantly focusing, will she forget how to use a sentence strip? Will she stop reaching out and holding my hand at dinner? Will she stop singing with me? Will she decide stimming is more important than trying to communicate?

I used to be the type of parent who believed strongly in "let kids be kids," let them play and experience, let them set the agenda. It fit my spontaneous personality quite well. As a family with triplets, and two of those triplets with classic autism, spontaneity has disappeared and been replaced by a never-ending structure. Simple parenting has been replaced by a strange mix of guiding/therapy/teaching/hoping/loving that always requires more than you ever thought you had, and you're always worried there isn't enough.

No, I don't hate your neurotypical children. Really, I don't, but in the middle of Autism Awareness Month, I do find myself still grieving the lack of typical neurology that exists for two of my children. Sometimes green eyes are pretty, sometimes they're not, and envious eyes are probably some of the ugliest around. Bear with me as I work through the grief and anger of still coming to terms with this diagnosis and what it means to our whole family.

6 comments:

  1. Wow! I really like your writing. Thanks for following me and you have a new follower as well. Good luck with all three!

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    1. Thanks Julie! I really appreciated your take on this same topic - http://juliesboyz.blogspot.com/2013/06/why-i-think-it-is-okay-to-hate-autism.html. It's funny for a group of people (special needs parents) that are filled with so much love, we sure do talk about hate a lot too. :-)

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  2. so neurotypical just means normal?

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    1. I'm so sorry for such a late response! I was just recently notified of this comment again so wanted to actually reply back to the question. Neurotypical could mean "normal" if there really is such a thing. Officially, it means a person who does not have any neuro differences at all, i.e. no autism, no attention deficit disorder, no obsessive compulsive disorder, no tourettes syndrome, etc.

      Personally, I believe all humans operate within a spectrum of symptoms of nearly all of the known neuro syndromes or disorders - it's just how much those symptoms end up affecting your everyday life. Because we're all different, we all define normal on an individual basis.

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