Saturday, 21 November 2015

What bothers me

Feeling helpless
Feeling like a failure as a mom

I don't even know how to begin this post.

I haven't written in so long because it's all too much.

I can't even go into details, I can't because the little boy involved in this scenario doesn't even know about the hurt this mama is feeling.  He doesn't know that his little life will soon be turned upside down.  And I have no plans to tell him- not until I have to.  

In the meantime what can I even say here?  How can I talk about our journey when I can't even talk about what's upsetting me so much?

I guess I can say this

I have taken on a lot as these boys' mom.  More than I have ever discussed, more than I ever knew that I could.  And I am happy to do it.  I don't mind the hours I have spent on the phone with insurance- because I have gotten the boys what they needed.  I don't mind the hours spent in waiting rooms- because the boys were receiving crucial therapies.  I don't mind the constant calls from schools, developmental pediatricians, psychologists, behavioral therapists, teachers- I want to know what is going on with my children, I want to help them be the best that they can be. I don't mind having 2-3 therapists in my home every single evening- in fact I welcome it.  

But I do mind feeling like a failure.  

I do mind feeling that all the tears, and effort, and prayers, and pleading, and working have not gotten us to where we need to be.  I do mind feeling as though my son is about to suffer as a result of us not making the progress we needed and wanted.  I do mind feeling like people are giving up on him when he has the potential to be something AMAZING.

I do mind feeling like he is being "lumped" into a category where he doesn't belong.  I do mind that I have been screaming (sometimes silently) for years that the school was not seeing the bigger picture and that he was going to stumble because of it- and that now that he is, it feels like he is being punished.   Like they wanted to keep him in the "mainstream" category for so long that now that they have changed their minds, they are choosing to lose faith in his abilities and assets.   

It bothers me that our family is going to feel even more isolated than it already does, that I feel like both my son and myself are losing a huge part of our social support circle- one that is very hard for a kid like mine to build.  

It bothers me that the last shred of parenting "normalcy" is now going to be gone.

Most of all it bothers me that I couldn't prevent it, I can't fix it, and I won't be able to shield my boy from the confusion and fear that change will bring.

But I tried so damned hard, I really did .


  1. Some autism parents are desperate to get their child into a special school and others are desperate to get maintstreamed. There are some excellent special schools for high functioning autism. Kids with HFA get picked on by the other kids in mainstream school, particularly as they get older. We have one son with classic autism and one who is NT. So we really notice how badly the boys with HFA get treated by their NT peers. The ones that then move to special school feel so much better and they share their feelings on facebook. Everyone has to find their place in this world and it may not be the one their parents intended.

  2. I wish I could hug you right now. You have not failed, you have not given up. I know this feels like you lost the war, but unfortunately this is just another battle. They have many years of school and life ahead of them and as long as you're there fighting for them they will still be so much better off and have so many more opportunities. Do not think of this as loosing faith. Try to rephrase it as a new place of growth and potential. Best wishes, Lee-Anne