Monday, May 14, 2012

Not a New Normal

I hate cliches, especially those about raising a special needs child. I do not think God gives us only what we can handle. I do not feel our life has been blessed by autism or that everything happens for a reason. No matter how kind the deliverer of these messages may be, I do not take comfort in these words.

The thing about cliches, though, is that they often contain a nugget of truth. And no matter how hard I reject the concept of the "new normal" cliche, I do find myself adjusting. Take this week, for example. My son Moe, who is five, has a very hard time falling asleep, and does not stay in his bed at night. So, for his safety and my sanity, he has a bed tent. The tent zips all around, and we use carabiner clips to keep the zippers closed. The other night, Moe was making his usual racket in his bed when he started screaming. We ran in to find he had caught his tongue in the carabiner. We set him free, calmed him down, made sure he wasn't seriously injured, replaced carabiners with twist ties, and put the boy back to bed.

Every few weeks my husband and I have to re-engineer Moe's sleep environment. Those carabiners were an adjustment from other rings that Moe figured out how to open. Moe sleeps in pajamas that zip up the back. And who can forget our build a better diaper project? I imagine for families of typical kids, stories like these would be momentous, told at dinner parties, embarrassing and hilarious antics told over and over, becoming family lore. For us, these weekly or even daily adventures are so numerous, most never get even a second mention. So although there is nothing normal about having a five year old who must be physically kept in his bed, I have come to expect this type of thing.

The truth is, there is nothing in our days that feels normal. No meal, outing, or diaper change is without effort.
Even a couple hours in the backyard requires preparation: close the gate to the dog's run, pick up all the oranges that have fallen off the trees, make sure I have everything I need because if Moe is outside, I cannot go back in the house even for a minute. While friends are choosing kindergartens, we are fighting for services in a system that is failing Moe. While others are planning vacations and finding summer camps, I am wondering if we will ever travel anywhere again.

But on days like today, when the kids pile into bed in the morning to snuggle, even for a few minutes, and we  fill the wading pool in the afternoon and my daughter pour water on Moe's head, and he giggles and runs but comes back for more, I can almost forget. I can squint my eyes and focus only on what is in front of me, and pretend that this is exactly how I dreamed family life would be. It may not be a new normal, but I'll take what I can get.



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Jen Bush also writes at her personal blog, Anybody Want A Peanut, where she writes about raising a preschooler with autism, a neurotypical three year old, and a dog on Prozac.

4 comments:

  1. What a beautiful, touching post. I have been slowly reaching the acceptance phase - very, very slowly. Even though he probably had autism from birth, my son's diagnosis still seemed so sudden - because in my mind one day my son was NT and the next a doctor was telling me he was not. It totally took the wind out of me and I am still trying to catch my breath. But I have come a long way - I have come to love most of his autistic traits, especially his dedication to repeating words and sounds that he loves, and the special way he uses echolalia to communicate. I don't like the meltdowns and I hate that he feels so anxious all the time. But, like you, I just try to make the most out of the positive moments. It helps that there are so many other special needs families out there, redefining "normal" and sharing their experiences.

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  2. I am so with you on the cliches. I grit my teeth every time I hear one, and lately, I've spoken up. One friend (a mom of a kid with autism) actually said that she thinks autism is a blessing, not a curse. I answered, "I would never consider it a blessing. My son is a blessing, definitely, but autism, never." I feel like I have grown and learned so much from my son, but I can't consider autism--which is the source of so many problems, challenges and heartaches for Danny--a blessing.

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    1. Patty - I'm so glad you had the courage to speak up.
      I often am speechless when the religious types come and give me some cliched advice.

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  3. I hear you! I am nodding vigorously. Over time, things slowly get a little easier for us; I am wishing you the same.

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