When Cuyler was 2 we put him on a gluten and casein free diet. We went to a local naturopath for guidance and added some extra supplements.
Started giving him regular epsom salt baths.
We noticed a HUGE difference. He became engaged. Able to focus. Language was emerging. We felt like we were getting our boy back.
Then he developed sensory issues and all the healthy food he was once eating he could no longer put in his mouth without gagging or vomiting.
Then, as happens, we got into a pattern where we would let the diet slide. We’d let him have a regular hot dog bun, or a slice of regular pizza. Or a piece of cake…
It was the Mommy-guilt. He would be invited to a birthday party and we wanted him to really enjoy it so we’d give him enzymes and let him enjoy everything about the party.
We got into a pattern of “easy” Easier to let him have the mac and cheese than to hear him cry for it for 3 hours. Easier to let him eat the soft, spongy cake than to watch him cry over the crumbled mess of his gluten and dairy free cupcake…
About a month ago I suddenly felt an urgency to do something. Something we had talked about for a few years but couldn’t do because of finances – BioMedical. I got angry when I saw that the government has spent $186 million dollars to fund a therapy program for children with autism. A program that we didn’t feel would benefit our son. No 2 children with autism are alike. I can’t understand how the government can think that ONE program will benefit them all. I sort of liken it to cancer – do you treat every single cancer patient with the exact same protocol? No – you look at each individual and treat their specific needs. With autism it’s here’s what we offer. Take it or leave it. Oh and the wait list is about 3+ years…
It’s infuriating. Every single thing we’ve done with Cuyler we’ve had to pay for out of pocket. When the money runs out, we have to stop and just do the very best with what we’ve learned and do it all ourselves.
I digress. Back to Bio-Med. I have felt that this is something that would benefit him based on the progress he made when we did a basic run years ago.
We were lucky enough to find a DAN! (Defeat Autism Now!) dr about 40 minutes away (there are very few trained in Ontario – about 8)
We were lucky enough to find a DAN! (Defeat Autism Now!) dr about 40 minutes away (there are very few trained in Ontario – about 8)
We met with her. Chatted all about our boy. She asked him questions. Asked us questions. Did an assessment and she told us what she had in mind for his treatment. We thought it sounded about right for him and wrapped up the 90 minute appointment.
We decided what testing we would do to give us a more specific path to take with him.
I collected our new supplements and waited at the front desk with bated breath to pay for that first visit.
$896.63
Deep breath in. Deep breath out.
I was not going to get stressed out about the cost.
I was not going look at my son and think “I can’t help you. It’s too expensive.”
I was not going look at my son and think “I can’t help you. It’s too expensive.”
I will not to put a price on helping him.
I was excited that we were there. Doing it. Jumping in with two feet (and a Visa card).
That afternoon I spent another 300 dollars restocking the kitchen and making it all GFCF.
I spent the rest of the day charting when the supplements will be given and and when I was going to get the urine sample I needed from him to send to Kansas. Yep…Kansas…
I was shocked to open the little box to find all of this in it.
It was like a clown car. Things just kept coming out.
I was shocked to open the little box to find all of this in it.
It was like a clown car. Things just kept coming out.Then my sole focus was on how in the hell I was going to give him MB12 injections in his rump 3x a week. But we committed. I have been – Monday, Wednesday and Friday’s. It’s not fun. He does not like it. But we get it done.
I am not one of those parents who throws around the words “recover/recovered/recovery”.
It sure would be nice, but realistically I just want him to manage life better. Regulate better. Not be as anxious about the world around him.
I want to pull out every ounce of potential that’s in there. Because I know there is a lot.
Are we seeing any results already? I’m not sure. It’s only been 2 weeks. But I will definitely keep you posted.
You’re amazing (to quote Desi). I’m so happy you’re doing this for Cuy – and for all of you. Can’t wait to follow his upward progress!
Wow Christine! You amaze me. I can’t imagine the effort it must take to keep track of all those supplements and always prepare gluten/casein free meals. You are an amazing mama!
Christine, you are an amazing, dedicated, committed mom! In a small way, I know how hard it is to advocate for a child who doesn’t fit into what our healthcare system has deemed to be appropriate. Having a child who suffers from mental illness, I had to fight tooth and nail to find appropriate treatment for her, and then pay out of pocket for it. The tab so far? Over $10,000. But of course we don’t put a price on our children’s health and well-being. Although I do think that as Canadians, who are supposed to be able to rely on our healthcare system to take care of us and our families, we are justified in feeling ripped off in cases like these.
You’re amazing. It is one thing to know you have to advocate, all the time no matter what, for your child. It’s another thing entirely to fight – and pay! – just as tirelessly for the solutions he needs. You are amazing.
and i thought i had it tough trying to get my oldest to take penicillin. you constantly blow my mind!