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The isolation of special needs parenting...





I wanted to title this post, the loneliness of special needs parenting, but halfway through I had to change the title. You will find out why as you read, so hold on to your horses and read at your own peril.

I looked up the word lonely, and according to the dictionary the definition of lonely is: "sad because one has no friends or company".
I guess, according to the meaning of the word, I can't call my journey of special needs parenting lonely.
The second part of the definition is mostly correct, most of the time I have no friends or company, I only have Jacques' presence, always there. But I cant say I'm sad. Most days I have a lot of happy moments, with Jacques.
A synonym for lonely is isolated, I guess that is a better way to describe the special needs journey.
The meaning of isolated is: "having minimal contact or little in common with others." Unfortunately, our journey has forced us to have very little in common with most people.

And it is the journeys fault. If autism was not a part of our journey, if type 1 diabetes wasn't a part of our journey, I am a hundred percent certain our journey would look a lot different.
We would be able to go out to eat at whichever restaurant we feel like, not Jacques' favorite EVERY SINGLE TIME. And we could do that whenever we feel like it. We could quickly stop at the shops and go into all the stores we would like to. But if we do those things on our special needs journey we get hit windows, we get a hooter blown at every stop or traffic light. In short, it is overall a traumatizing experience.

Ruben would be able to have friends over who wouldn't leave our house with PTSD after a visit.
That is why this special needs parenting thing is such an isolating experience.

You lose most of the people you thought would be in your life forever. And please believe me, I am not bitter about this. I really understand the reality of our life, I know Jacques can be VERY intimidating. And if I am completely honest, I have to admit that I have considered drastic measures. Measures I do not wish to discuss at this stage because it hurts to even consider. And no, it's not as bad as it sounds. Let's just say that I have had fantasies of placing Jacques in an institute.

But, and this a BIG BUT, you gain a village that helps you through the isolation.
When I feel like my last marble is about to roll into the ether, my mother in law will come to fetch Jacques for a visit. Without me having to ask, she just senses somehow I could use the break. She is part of my village.

I am very blessed to have a sister and brother in law that travels 260km to come through for a special event in my sons life. They are a part of my village.

I have another sister who is always available to babysit for a night or a weekend so that hubby and I can escape from the journey for a little while. She is part of my village.

These woman are my rock, they keep me sane on this very insane special needs journey.
Our village include men that are always by our side, no matter what, we can always count on them.


And I thank God everyday for blessing my little family with these amazing people who carry us without even realizing it most of the time.
My sincere prayer is that my fellow special needs mommies and their families have the same type of village to help them.
And if you don't, please reach out, there are a lot of other people in similar situations. I am blessed to have other mommies of warriors that I share a lot of my struggles with. And sometimes I share things with them that I wouldn't even share with the people in my village.



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