I realized that after yesterday’s post, you might think I’m a) being a bitch about autism, and b) that Zoe is not thriving or doing well. So I thought I’d take some time to explain. First, though, I must tell you that Amelia is 3 years older than Zoe, who wasn’t diagnosed with PDD-NOS until about age 3, so we’ve been dealing with the concept of autism only for a few years now. I’ve had a much longer time to assimilate Down syndrome into my world view/every day life than autism.
Honestly, though, autism and sensory issues are more difficult to deal with. How do you explain to a child that civilized society demands she wear a shirt, when the shirt itself is pure agony to here? Very tough stuff, and if you have an answer on how to explain that to a delayed 5yo, I BEG you to comment here, because I need to know.
Sure, Zoe has tantrums, and rarely but sometimes bites herself, and the slightest change in routine can upset her, but she also gets along just fine on vacations and weekends (no two of those are alike), adjusts to changes even if it takes longer, and can now bear many things that she couldn’t at 2 or 3 or 4.
Not only that, but this morning I spoke with her behavioral specialist from summer camp. I’m so very proud of her. For the last 6 weeks, she has been going to camp by van, picked up at 7:45am and back at 4pm, for a full day of camp with transitions every 30 minutes, as well as changes in routine (every other day there was swimming and she went on 3 field trips, plus had a closing party). She had a rough first week, a slightly rough second week but here’s the GREAT news…
ready??
really, really ready???
Every single week she improved on the week before! Every week she did better and better, and on her last day the aide told me, “Too bad she’s not here another week, she’s doing so great!” Can you beat that?
The specialist told me she’s really smart, but also she really … shall we say she sticks to her guns? In my opinion, that’s awesome. I have two daughters that won’t take sugar honey ice or tea from ANYONE if they don’t want it. Yea, it can make life … LOUD around here, but it also means they know how to fight their way through this world.
So maybe I’m not *quite* up to passing on it if God offered to remove her autism. I am, however, suddenly aware writing this that maybe my girls learned that fighting spirit watching me fight for them. I wish they didn’t have to, but it’s most likely that each of my daughters will need to make a stand or put her foot down for some reason, and they’ve got the…you-know-what’s to accomplish it.
I’m so proud of Zoe, too. I know this was really hard on her, and yet, she found that she enjoyed camp. The kids loved her, even if she still only parallel plays and maybe one child who she mostly didn’t mind. Who says we special needs parents always have to wish it different? Maybe it’s ok, exactly as it is.
peace out, g
Kimberly says
I think sometimes rather than try to get our kids to adjust to what the world expects that we try and show them a way to make the world adjust to them. Easier said than done, I know. I’m thankful that for the most part, tags and scratchy shirts don’t bother my son as much as they used to so I have no good answer for you there. Have you look at this company?…they make clothing meant for kids with sensory issues. http://www.softclothing.net/
admin says
Hi Kimberly, thanks so much for the link, I will check them out!
My personal opinion is that it should be *both*. We need to equip our kids for when the world just turns away and turns them out, and we need to instruct the world that our kids have value and worth, and can be integrated and become productive members of society. I don’t want to kill their spark to find themselves in whatever outlook they need, but they do need to adjust to others somewhat as well. Give & take, that’s my 2 cents 🙂