Parts and Pieces

I don't know what to write tonight.

I'm thinking about Elias's future. Where will he be at 22, when he ages out of the support systems available for children with special needs?

If he doesn't shapeshift into a tiger, what will he be when he grows up?

I watched two movies this week on PBS: Lives Worth Living, about the the Disability Rights Movement, and Autism: Coming of Age. My mind expanded more than a few degrees in the watching. And yet I sit here unable to write about what I saw. Still processing it all.

Elias will be tested in the next two weeks for Autism. 

And I do think he's somewhere on that spectrum.

And a part of me wants to throw down this kitchen table I sit at, crash it to the ground along with this computer and all the words I could ever write on Autism and Cerebral Palsy, and visual impairment, and a baby born and resuscitated before 25 weeks.  I want to kick over the chairs and stomp on the wooden legs until they no longer stand. Till they fall to pieces too.

And yet another part of me sees Autism as a blessing for my miracle boy. For the baby who squeezed my finger when we first met so I wouldn't let go. Who shows me, daily, what strenth is and how to love beyond words, above ordinary and expected and normal and healthy and OK.

A blessing? you say.

Yes.

Elias is second grade boy who is legally blind, wears diapers, and  walks with canes. He sits in an adaptive chair in his classroom of 25 "more typical" kids with an Aide by his side and will say out-loud, "I have a poop." And yet he has shown no emotional angst about how he is perceived by others. Or even how he compares physically, socially, or intellectually to kids his age.  If this is the gift of Autism, I may not need to destroy our kitchen table, the place where I write, and where our family gathers to share a meal at night. I may still want to sit here awhile and sort it all out.

I don't know where Elias will be at 22.  But his place at the table, in our kitchen, in our home, I owe to the protesters of the Disability Rights Movement, who literally crawled up the Capital Steps to demand access to public services and inclusion in a society that had previously put children like Elias in an institution to just sit.

To sit.

Elias will not just sit for a living, this I know. And the rest, well, it will come.

 

Comments

[Jaki Berggren]

We all wonder what our kids will be when they grow up. I too am always caught up in doing everything I can to make sure that "when he grows up" he will be....fill in the blank depending his age or what he is in to. I think we live in a society now that is overyly obsessed with "what our childern will be when they grow up" and so many are putting kids in so many activitites hoping they will be the next greatest soccer player, baseball player, movie star, etc. I can see how it is even more of a stressful question for your Elias.....I read a quote the other day that struck me as so true....It has actually had a drastic effect on me and how I look at my son....I have this quote posted in my house so that I read it everyday!!! Because it would be so easy to forget and fall back in to the rut of overly trying to prepare my son for a future that isn't even gauranteed. I will leave you with that quote as maybe it will resonate with you as well. "We worry about what a child will become tomorrow, yet we forget that he is someone today." ~Stacia Tauscher~

[Sara]

For not knowing what to write, you wrote some pretty powerful stuff. He most certainly will NOT be sitting in boredom - he's way too active and engaged for that. Note to self: Track down those two PBS movies.

[Christy]

I love the quote Jaki and plan on putting it on my wall too. Thank you for sharing it. I agree that our society is too future-child oriented, with pressure to create Super Kids who can do it all. Our houses no longer have to be perfect but our kids do. Thanks for the reminder to be here now. In this day. The Autism movie focused on 3 children with Autism coming of age and their roles in society as adults. Got me thinking....

Yes Sara, if you can watch the movies I highly recommend them both. The one about the Disability Rights Movement especially blew my brain because 21 years ago, just 21 years ago, the ADA was finally signed into law. And there are all these heroes from the movement that I never heard of as their stories have yet to make it to mainstream. Both movies are one hour documentaries that I just happened to catch by flipping channels but I'm sure they will be available online.

[Greta]

Hi Christy, I work to raise funds for a camp for kids with life-threatening illnesses. Sometimes it seems easier to raise money for groups who research cures for cancer than trying to make a case for a place that offers fun and empowerment for one week of camp for kids who have a tough go. So even though we need brainy scientists to help solve problems, we also need creative, loving people who focus on making life a little happier for others. Elias is so lucky to have landed in your arms. And I never stop admiring the photograph at the top of your blog. It's brilliant.

[fleming]

I want to watch too. They sound terrific and informative. When I worry about what my kids will be when they grow up I try to remember that I am still wondering what I will be when I grow up and that there is never a final answer because it just keeps shifting. Somehow thinking about that makes me less anxious. Oh and I hope the testing for Elias isn't too trying for him. Sometimes the tesing itself is so difficult and tiring!

[Liz]

Dear Christy, I've been reading you for years and have responded only once. I don't have a gift of words. Oh how your words resonate with me. My Joshua is a 26 weeker, turned 15 this weekend, in a wheelchair, in diapers, CP, DD and I desperately worry about his tomorrow. At our last visit with our nuerologist I suggested that he has always shown some autisic tendencies. The Dr. smiled and nodded yes to me - no words needed. And I don't want to test because I already know. I just got out of a meeting with some members of my church who support our kids with disabilities and their families. Josh will soon be "too old" for Sunday School and THEY want to plan ahead because they want him to feel comfortable in a setting that's right for him. It's refreshing to know that others are truly thinking about his future and whats important to him, no matter how small but so important to our family. Thank you for allowing us to watch your children grow. And thank you Jaki for the reminder about today.

[Christy]

Greta, thank you for doing the work that you do. I know the camp is such a gift to both the children and their families. And thank you too for sharing your perspective here, its true that we all need more creative joy in our lives--cures are always needed but so is acceptance and love of what is.

Flem, thanks for reminding me that there is no set thing we are when we grow up just constant growth and change. I'm starting with an educational assessment with our school psych. b/c its the easiest step, especially with me working at the school. She says its a lot of play and one of the more fun tests she gives so hopefully it wont be too trying for Elias.

Liz, I'm so glad you wrote again. And that your church is supporting your son and your family by thinking about how to include him as he ages. It is so much harder to foresee the future when our kids need so much extra care. I understand not wanting to test. If I didn't have such an easy in at school I'm not sure if I would have moved forward to have Elias tested, not yet...

[Kate J]

I can tell you where my 22 y/o son who has Asperger's and a learning disability is... he was sent home from the military w/in the first week, worked overnight stocking shelves at Target, but it was seasonal, and he was not rehired. He tried college classes, but that didn't work out. Then he found a job that he loved, loading trucks overnight for UPS. He stuck with it for over a year, did well, and truly looked forward to going to work each night! However, now that he has been promoted to supervisor, he is not so sure... I have hope that if he can overcome his difficulties this time, it will be a major victory and self-esteem boost. If not, he has his prior success to look back on, and at least know that he is capable. I guess the concerned parenting will never stop with this one.

[s.e.]

My daughter is going to turn 15 next month. She tells me she doesn't ever want to turn 16 because she knows she won't be able to learn to drive (she can't read) or get a job either. She has a diagnosis of severe learning disabilities and general developmental delays, no known causes, that will probably be reclassified as a developmental disability once she is legally an adult at 19. I don't know what she will do as an adult. My dh is retirement age now but still working full time, in at the most 5 years we will be 3 people living on the pension that is supposed to support one person. I can't work outside the home, my daughter isn't independent enough to be left alone for more than a short while. We are hoping to redo her educational testing and maybe if we are lucky she will get disability $$$ as an adult too. In any case, she will continue to live with us and pursue the things that she is interested in and can actual handle.
But in answer to your worries, even NT kids can have life threatening difficulties crop up, and I wouldn't look too far ahead unless there is some financial planning you can do but I suspect that you don't have extra money laying around anymore than my family does. I have 4 adult NT kids and I worry about them too by the way but it's not the same because they are able to financial support themselves.

[Christy]

Kate J. and S.E. thank you for giving me glimpses into your older children's lives. And for reminding me that we will always worry. I know my Mom still worries about me and I'm 38.
(And S.E. if there's extra money around here it was hidden by the previous home owners:)

[Emily]

Reading your post about a possible gift hidden in a diagnosis of Autism, I thought about the following: people often get labeled "on the autism spectrum" because of a lack/delay of language, social and engagement skills. However, language delay is true for many people with CP, and any type of DD (ADHD, PDD-NOS, etc.) and then add on legal blindness (which makes it hard to read subtle facial expressions and other non-verbal cues, thus causing the social and engagement skills issues) and you have all three more than covered. So, my question to the person who is doing the diagnosing would be simply, "How do you know?"
I have a client who's mom is working on multiple diagnosis- she's somewhere on the autism spectrum, with bi-polar tendencies and severe OCD behaviors. How much of the mood swings and control issues are autism? How much are separate issues? It's different than Elias, but it's similar, and It's not simple.
But you already know the most important part, a label is just a label. It doesn't define your kid, it probably won't even offer as much insight as you might think. If it helps you access more services, you should probably take it, but don't put too much weight into whatever they say, Elias is Elias. Lovable and determined and inspiring and hopeful.

[Christy]

Emily, this has been something Nick and I have talked about for years...how will we/they know when his vision especially, makes it hard for him to read social cues. He misses all the non verbals of communication. Also who knows what is due to the part of his brain he damaged at birth or... would he have communicated differently if he wasn't born so early? I don't know. Thanks for getting this and articulating it so well. I think are hope is that if he ends up with the label it will open up more services but you are right that it won't change Elias.