I feel like my life has 3 modes – moving forward, plateau and regression.
And that’s the cycle we tend to go in – moving forward, then hit a plateau and then fall into regression.
And that’s the cycle we tend to go in – moving forward, then hit a plateau and then fall into regression.
When we are in “regression” – life sucks. Truly sucks. Cuyler screams at everything and everybody. He is constantly stimming, bouncing, jumping and making noises. He creates chaos in the house by making a mess in every room by ripping up tissues or paper and emptying bin after bin of toys. Or spilling juice on the carpet. Or not letting anyone watch what they want on tv. Everyone is one edge and it’s not a fun or happy time. My frustration with Cuyler and the autism equals the guilt I have about Cam and Eva having to live with such stress.
When we are in “plateau” – it’s similar to regression only without the edge. The house and it’s occupants are a bit less stressed. Cuy is a bit more in control and controlled – but we know where we’re headed. I spend a lot of time online talking to other ASD moms about what we can do next. What has worked for them. What strategies we can try to implement. I scour over his diet and wonder how I can possibly nourish him better. I deal with the fact that I have spent hundreds and hundreds of dollars on supplements for him, only to have him refuse all of them. I feel a bit frantic to find something new to try and avoid hitting regression.
When we are in “moving forward” mode – things are great. Everyone’s on a steady path. Routines are regular.
I feel we are at our most “normal” in this mode. We can do everything everyone else does. Go to a restaurant as a family. Take Cuyler to the grocery store. Or video store. We can lie in bed with him and cuddle at night before he falls asleep. We can eat at the table as a family. There is a lighter air in the house.
There is no anticipation of what his reaction will be to certain situations. We know he’ll manage.
I feel we are at our most “normal” in this mode. We can do everything everyone else does. Go to a restaurant as a family. Take Cuyler to the grocery store. Or video store. We can lie in bed with him and cuddle at night before he falls asleep. We can eat at the table as a family. There is a lighter air in the house.
There is no anticipation of what his reaction will be to certain situations. We know he’ll manage.
For the past 6 years I have searched for a full spectrum vitamin and mineral supplement that he would willingly take to hopefully make up for all that’s lacking in the diet (almost everything). After chatting with a few other ASD moms I decided on trying a new liquid supp. I can only get it online from a supplier in Montreal. The cost? $129.
I told Cuyler he needed to take these vitamins and if he didn’t then he would have to go to the hospital and they would have to give him vitamins to make him healthy through a needle in his arm. That probably sounds horrible but it worked. And the pills? They’re DHA capsules. I had zero expectation that he would take them and just assumed I’d be the one to start and finish the bottle. I was absolutely gobsmacked that he was able to swallow them. Pills are had to swallow for most kids, nevermind kids with a heightened gag reflex But he did. First try. He has never been able to do that.
I told Cuyler he needed to take these vitamins and if he didn’t then he would have to go to the hospital and they would have to give him vitamins to make him healthy through a needle in his arm. That probably sounds horrible but it worked. And the pills? They’re DHA capsules. I had zero expectation that he would take them and just assumed I’d be the one to start and finish the bottle. I was absolutely gobsmacked that he was able to swallow them. Pills are had to swallow for most kids, nevermind kids with a heightened gag reflex But he did. First try. He has never been able to do that.
Also? We’ve been on a wait list for about 6 months to see an osteopath. We wanted to try treating Cuyler from deeper inside. I was really hoping that Cuyler would be able to accept the treatment. He’s always been very averted to touch. He has always been comfortable with Sean and I touching and treating him with various tactile activities – but anyone else? Forget it. But like everything else – we had to try. And I sure am glad we did….
By God he loves his treatment. I’ve never seen him so receptive to any other treatment or therapy. I almost feel like he knows that this is going to help him, so he just lets it all happen.
…moving forward. Definitely moving forward.
We’re seeing some pretty great things from him these days.
Is it the vitamins? Osteopath? Both together? I can’t say for certain where the changes are coming from, but we’re going to keep doing what we are doing and just ride this high right now.
We’re seeing some pretty great things from him these days.
Is it the vitamins? Osteopath? Both together? I can’t say for certain where the changes are coming from, but we’re going to keep doing what we are doing and just ride this high right now.
Hey Christine! Great to hear that things are well. I love osteopath, it’s doing great things for our guy.
Christine, I’m so glad you and Cuyler are moving forward. You are my hero too, the super extra effort it takes you to do all the research and then apply it is astounding. And dealing with Cam and Eva also. Amazing. And, I know you feel guilty about Cam and Eva, but try not to. Kids are resilient when they are loved and nurtured as they are.
you are amazing, that is all I can say.
SO IMPRESSED with the language, the clarity and openness. xoxoxoxo BIG HUGS
Oh, this is such good news, Christine!! Wow. Those horse pills? WOW!! And the osteopath… man, I hope that helps. (Can’t hurt though, right?) Your beutiful boy looks so relaxed…
Sending you hugs, lady. xoxox
Oh Christine, he looks so content during the treatment! Amazing.
You are seriously my hero. Your ability to step back and see that “moving forward” is waiting for you on the other side of the tough times is so admirable. We could all learn from that.
You are a fabulous mom!
Mish – I’d be the same way if I were getting the treatment. It’s such a gentle mode of delivery.
Kimmy – the struggles make the happy times even happier.
Hey – lets run soon!
That’s exactly what I think when we’re at the osteopath – just how incredible it is that he falls into the treatment! It’s the most relaxed he ever is and his eyes are fighting to stay open on the drive home.
Thanks T – his charming face sure will take him far!
And yes – every stage takes us somewhere we haven’t been before and I try to always remember that when we’re in the yucky place, “moving forward” will always be there waiting for us.
I know right?!
I’m still shocked everyday when I see him take them…
He sure looks relaxed & at peace in that last photo with the hands on his back.
OMG.
I cannot believe you got him to take those pills.
I don’t even think that I could take pills that big.
What a struggle. so happy to see Happier days for you.
I love his peaceful look in the last picture. I can’t believe he let the person do that – it’s incredible. God, it’s incredible that he’s just lying on that table Christine. Moving forward is awesome!!!! Keep going Cuy!
It’s neat – but I definetely see these cycles in your posts Christine! I guess the best thing is that with every moving foward stage – you’re moving one step closer in the right direction… progression.
Man – Cuyler’s a good looking kid!!!