His “eees” resound throughout the living room, punctuated by small silences that make me look anxiously toward him and gratefully away as I realize they are just silences, not episodes of catatonia which invade his happiness and enjoyment of life. Since we started a new medication eight weeks ago we have seen a vast improvement in quelling his disorder, starting with near-miraculous eradication of the spells for two weeks, a plateau where they resumed but not with their initial ferocity, and a leveling out that both his school and family can live with on a daily basis. It has been an incredibly stressful six months of first having to diagnose him, choosing between conflicting diagnoses, and then holding our collective breaths and hoping we picked correctly and treatment would help him.
It did. And a half a year and two very tired parents later, we are profoundly grateful.
Justin is almost fifteen, and to tell you the truth I anticipated that going into puberty there would be something (all my friends’ kids have experienced some additional challenge to their severe autism), but honestly, I never thought it would be this. I anticipated aggression, or seizures, or even self-injurious behaviors which he had never exhibited previously, but not catatonia. Frankly the only time I’d ever heard of it was in relation to the movie “Awakenings,” which was a total tear-jerker and sad as hell. I read a lot about autism on various websites, and I was stunned I’d never heard of this disorder that affects between 12-18% of all individuals on the spectrum.
Live and learn.
Although I was prepared for future challenges, I have to admit I was (and am) angry my boy has one more thing to deal with in his life. Quite honestly I feel that dealing with severe autism and OCD are enough to handle, but the universe has mocked me and has other plans, so now we’ve added catatonia to the mix. Since I was anticipating something would rock our world and we’ve now identified it and are treating it you’d think the drama would be over, and it is somewhat. We have a name for what ails him. There are several treatment possibilities should what we’re doing now fail. It should be life back to “our normal.”
You’d think I could say the other shoe has dropped. But with autism, and especially with severe autism or any severe disability, it ain’t over ’til it’s over.
This year I’ve dedicated my writing for Autism Awareness Month to helping caregivers. I’ve spoken about getting the help you need, whatever that may be. I’ve written about the importance of making friends with parents of children with your child’s level of severity. Today I want to talk about how important it is to let the people in your life know the big picture, especially if your child will never live independently and will always need your care, or that of a caregiver.
For years my husband and I didn’t talk about the long-term implications of Justin’s severe disability. I think we kept things close in part to not worry people, and perhaps somewhat out of a fear that if we were “Debbie Downers” people would abandon us. I’m not a big believer in regrets, but if I could go back and change a few things I would have spoken more about the potential and likely trajectory of Justin’s life, just so the people who are important to us could get a glimpse of what his forties, fifties, and beyond will probably entail. For once I recently took my own advice (a miracle!) and wrote a long email detailing Justin’s newest disorder, the various treatments he might have to endure, and even worst-case scenarios. I even explained how having catatonia could severely affect not only his post-twenty-one life, but his parents’ lives as well. I laid it all out there, held nothing back.
And damned if almost everyone responded with kindness and concern.
Of course this response rate is a testimony to having understanding families and my choosing good friends, but this disclosure helps in a myriad of ways. It’s also a dozen or so less times I have to spill my guts and try to make people with no direct contact with severe disability understand how profoundly this affects my family both now and in the future. If I have to cancel a get-together I don’t have to explain what’s going on, or discuss why perhaps I’m just completely overwhelmed and can’t make it that day. This understanding of our situation can help prevent relationships from disintegrating, and help others understand why my stress levels the last six month have been through the roof (my new blood pressure medication can bear witness to that). Quite honestly, it makes it easier for me to ask for help if I need it, as once people get the huge ramifications of what Justin’s experiencing they will probably come to our aide more often if we ask.
And God knows, we can all use a little help sometimes.
I don’t tell everyone the full story. I am careful in who I choose, selecting individuals I know will care and be genuinely interested in what’s going on. Good friends, yes. My dental hygienist in my thirty seconds of speech- not so much. I try to avoid people whom I know will get that glazed look in their eye when I speak about my son. It’s not worth the trouble.
You will find probably find however that a number of people in your life are genuinely interested in your family’s story, and I recommend you divulge away. Let people know what autism means for you on a daily basis, not just how it affects your hopes for your child, but your daily routine as well. If disclosure leads to them asking if they can help, give it a try and let them. Honestly, if they drop you like a hot potato after you disclose they would have abandoned ship eventually anyway. It’s better to cut ties sooner than later.
With many types of autism, there exists the perennial “other shoe.” For my family, the worry will never be over as I strive to outlive my son and know I never can (but I’ll give it my best attempt). If I’ve learned one thing in my decade-and-a-half living with an autistic child it’s that there will always be something, and it may not be pretty. Lighten your load if you can. Speak up when it’s appropriate.
Try to loosen your grip a bit on that other shoe.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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