Today I woke Pudding up.
I could count on one hand the number of times I could have used that sentence. Sleep has always been a challenge in our house, but over the last few weeks, things have been worse than ever. We’ve been starting the day at 3 am. I don’t function so great at ridiculous O’Clock.
Living at altitude seems to be particularly challenging on the respiratory system, and after struggling night after night with her breathing, we finally determined the cause: asthma.
It comes as no surprise to me. I was diagnosed with asthma in infancy. It runs in my family, and is strongly associated with the severe allergies that also plague Pudding. Every time we’ve visited the doctor, every place we’ve ever lived, I’ve always had them check her lungs. Until a few months ago, I’ve always been able to breathe a sigh of relief. Then the doctor heard a wheeze, and it got worse from then on.
In the last few weeks she has been so disturbed by coughing that sleep has been even worse than usual. I didn’t need a stethoscope to hear her wheezing, and even anti-biotics couldn’t clear up the persistent bronchitis.
So last week we got that initial asthma diagnosis, and along with it the medicines that would help her to breathe. Every night has been a little better than the previous, and then finally last night we were down to just a couple of interruptions, and the longest sleep in quite some time.
We don’t know if this is a reaction to living here. It could be the altitude, the incredibly dry winter, the many allergens specific to Southern Africa. We probably won’t know until we move. Or it could be that she was genetically pre-destined and this was going to happen sooner or later. I could have used later, but at least we got to 6.
The good thing is that she is responding well to the medication, because there are few things scarier than watching your child gasp for air. In fact, the medication is so effective, that she asks for it, and hasn’t even put up a fight about the strange-looking spacer that helps her breathe in her inhaler.
I don’t exactly want to add another disgnosis to Pudding’s collection, but at least with this one, I’m on familiar territory. I know how it feels, I know how to make it better, and I know what to do. While there may never be a cure, there are plenty of effective treatments available these days. She is doing better every day and even getting the colour back in her cheeks.
The only trouble is, she resembles me in another way too. This kid is furious at being woken up! Maybe I’ll make that Cubby’s job from now on. We have an awful lot of sleep to catch up on now that we’re both breathing easier.
I remember when we first got Pudding’s autism diagnosis (actually, Asperger’s diagnosis, but I’ll come to that) how I thought that we could extend the American Dream to apply to this situation. The Autism Dream. I was a new immigrant to this unfamiliar land, you’ll forgive me.
If I worked hard enough, if we did enough therapies. If we tried this therapy, or bought this app. If we just put in enough efforts, we’d get the rewards we deserved.
And what would those results be? TIme has changed my answer to that, like it has so many values I took as sacrosanct. But back then, I hoped for results and improvements, measurable values that we can find in the world of work, but impossible to apply to my daughter.
Still, I had ambition, and I was prepared to graft.
Then yesterday came the results of our reevaluation, which were at once completely expected, and a shock that has left me reeling. We need to do frequent reevaluations to apply to international schools and set up our therapeutic programs. That whole free and appropriate education provided by law just doesn’t apply to us overseas.
And so now we find that the Asperger diagnosis, doesn’t apply to Pudding, and should never have been given to her.
“Her language skills did not continue to develop as expected.”
Rather, she meets the criteria for the new DSM-V Autism Spectrum Disorder, with the following additions:
- Language Disorder, Not Otherwise Specified
-Disorder of Written Expression
-Learning Disorder, Not Otherwise Specified
and maintaing her Motor Coordination Disorder and ADHD diagnoses. Just words in stark black and white.
According to the American Dream, we would work hard and overcome these obstacles, not face more and more challenges as time goes on. As happens every time I read one of these reports, I’m heartbroken at the difference between the way we view the same child.
Am I not working hard enough to make things better for her?
Hours after reading this report, I placed my girl on the bus for her last day of Kindergarten, and I saw the contrast I needed from the cold and clinical report. She made an incredible achievement this year. She has learned to read and write, advocate for herself, make consistent progress, and graduate from kindergarten.
She has gained the affections and support of her peers and teachers. She has faced the challenge of a new environment, and excelled there. She has earned her spot in a school, and a place in the community. She has made me proud every single day.
And that is The Autism Dream for us. It isn’t that we can work away her challenges, it is that she can grow and develop and match them. On paper, she doesn’t look good. In person, she is incredible.
I’d be lying if I said this was easy. I’m crying as I type. But I know there isn’t a report that could be written which could ever capture how amazing this child is. I know, because I’ve written about her for years now, and I’ve barely scratched the surface of everything I could say about her.
The Autism Dream has never been about changing her to fit in, but revealing this world and our societal standards for the imperfections that they are. She shows me truth, joy, and love. She shows me what is truly importantl, and I never want to wake up from that dream.
You’ll have to forgive my mood in this post. I have a particularly nasty chest infection. It hurts when I move, laugh, talk, or- you know- breathe. Pudding is also home ill with tonsillitis. She complained about her head hurting at the weekend, and took an extraordinary (for her) five hour nap on Sunday, but since we visited the doctors and got her medicine, she seems back to herself.
With one exception.
Because she had a fever, we didn’t give her her usual medication for ADHD. Sometimes Pudding is doing so well, I forget what a vital component medication has been for her. Then we take a break, and I remember.
I remember Pudding before she was five, with a body and brain that seemed to be in overdrive. And now, even though she is ill, it is just the same. Her body can’t get the rest she needs to recover. Her brain is seeking stimulation that she just can’t handle at the moment. She needs to rest, and that is the one thing she can’t do.
I never wanted to put Pudding on medication. I looked in vain for another way. We tried a few ADHD treatments where we felt the side effects were worse than the results, and then made a last-ditch attempt before giving up. Her particular chemistry found the right match, and the hyperactivity reduced considerably. It isn’t perfect, she still struggles greatly with attention, but her engine isn’t in overdrive any more, and slowing down just a little has helped her in every possible way.
Honestly, I don’t know if the child who couldn’t sit for even 20 seconds would have been welcomed into a mainstream class. I’m not sure if the child who skipped through books so quickly that every single one we owned was torn from its bindings would have ever slowed down enough to learn to read, or write. I know that she finds it easier to get through her various therapies now. I know that she is able to learn now. And play. And swim. And do all the other things that kids can do.
She may have made this progress anyway, but seeing her these last couple of days makes me think it would have been slower, and harder. The faster her wheels spin, the deeper she sinks into a rut.
I’m not saying that medication is for every child- far from it. Stimulants were terrible for Pudding, and a spectrum child seems far more likely to have atypical side effects. I still want to be the idealist mother who could find another way. But I know we made the right choice for our kid. I know that she is happier, feels better, when she can calm herself.
So what really ticks me off, is when I read yet another unscientific article about how ADHD (and sometimes ASD) is a construct of our times. Sometimes people actually send me these articles, wanting to help, I suppose, but doing quite the opposite. I can think of a dozen other ways to help other than telling me I’m doing it wrong. Sometimes I read, sometimes I just delete. They always read the same. Parents and doctors don’t let kids be kids, and if we just let our children play outside, or kept them off candy/ computers/ TV, or gave them the right diet/ vitamin/ parental attention they would be fine. Let kids be kids, and don’t turn them into zombies!
When the truth is- I just want to let my kid to be a kid, that is all I’ve ever wanted. This is one of many ways I help her to do just that. I wouldn’t even care about how exhausting her condition is for me, if it wasn’t even worse for her. There is no magic pill, but if there is something that helps her, perhaps even reduces the risk of harm coming to her, I’m going to keep on doing it.
And if there is anyone who thinks Pudding’s ADHD or her autism aren’t for real….well, they’re more than welcome to come here and get a dose of reality. Because much as it hurts at the moment to chase around a child who can’t keep herself out of harm, it hurts a whole lot more to be judged for doing it as well as I can.