Today I want to share a passage I wrote while I was in the trenches. Please know I would not change my children for the world. They are EXACTLY who God created them to be. This was a time in my life that I was struggling and lost and felt so very alone. While the rest of my friends and cousins my age were out building empires and getting degrees, I was trying to find my footing in a world that didn’t know how to help. I wasn’t able to get a babysitter, go out with friends, or leave the house. I don’t want you to feel sorry for me. I am just trying to bring awareness. Maybe you have been here. Maybe you have felt guilty for having feelings like these. It’s okay, friend. I’ve been there too.
~~~~~~~~~~ You may want tissues, I cried while typing.
Autism SUCKS! It is inconvenient, socially inappropriate, and INTENSE. As a parent, it was heartbreaking to me at first. It put a HUGE toll on & ended my already broken marriage.
Now, being a “parent” meant more than putting your kids first. It meant stopping your whole “YOU” to dedicate every single second, yes second… to a person who won’t look at you, can’t talk to you, and has no awareness of anything around them. A person YOU CREATED – with no acknowledgment of your hard work. No progress to “report”. Nobody around you understands. There is no way for anyone to even comprehend. Unless you are physically “in the trenches”, pouring your soul into that what you love most & seeing almost no results.
I am mad. I am bitter and angry and have resentment towards EVERY SINGLE PERSON who isn’t in my shoes.
- I am mad that Dad gets to leave the house and go to work. Or skip out on most of his “visitation days” to start dating again, while I am locked in my damn apartment trying to stay sane.
- I am bitter that my friends have vanished. They are busy with playgroups and swim lessons and all the things we can’t effin’ do because just leaving the house puts my kids into a frenzied whirl that will affect us for days.
- I am furious that “family” cannot handle my children or who I’ve become while in the trenches. “It’s a culture shock” “It’s too much” “You are mentally unstable.”
- I am jealous (REALLY REALLY JEALOUS) that relatives are all having kids too, and they are all healthy ~ Reaching milestones, and getting to enjoy all the “firsts” that I don’t even know will ever come for me.
I feel like I am being punished. Why me?! Why not her? Her family has money to get more support than I have. Why not him? He did all sorts of crazy shit growing up that may inflict bad genes.
What did I do so wrong to have my life’s freedom stripped away so intensely that I cannot even go get a cup of coffee? Why do I have to watch my son scream with anger and hold him down so he doesn’t hurt himself or us – just because he couldn’t get toys to stack the way he wanted? Why does this feel like a life sentence?? I love my children with my entire being and my love isn’t enough. I cannot make the anger stop. I cannot get the screaming to stop. I cannot get the … Autism… to stop.
So on top of all this loathing – let’s bring on the judgment of the “Experts”.
Every single Autistic person is different, and the world does not even know what causes autism or the best way to “handle it.” ( I say that rolling my eyes). Our house was Grand Central Station with therapists, case workers, etc… All wanting to try things that “might work”. Me saying: “Yes, we will try anything.” because I had fear within that the one thing I didn’t try would be the “cure” to it all. Pretty soon you’ve got an exhausted Momma on anti-depressants who cried alone regularly.
One day I was sitting at the dining room table looking at the list of people who were supposed to come that day for the kids and I just closed my eyes. I was at the end. I was way past overwhelmed and struggling to maintain. This wasn’t me being a good Mom. This was me doing what society says I should, at all costs for my children. But was it worth us being rundown and weak? Why would my kids want to interact with anyone who was trying to change them? Isn’t there a better way to help them grow and find themselves? I then started crossing people off my list.
- Is this working for either of my kids?
- Have I seen improvements, even small ones?
- Are they happy while doing it?
- What areas did they enjoy that brought them into our world?
- What was I doing just because “someone” said it worked for “someone” somewhere out in the world and they wanted to use my kids as guinea pigs to see if they could get it to work too?
- Whose best interest was a priority? My children or the “experience” this would give someone with this Autism thing.
Don’t get me wrong, I know it is trial and error for each child, but how long do you keep trying? How many months/years can they scream in protest with me just watching? I was shamed for this. I was told I was making a mistake of a lifetime. I was “that Mom” when talking to therapists. The one who didn’t know… didn’t love enough … and was being selfish. Hindsight, I think they were upset they lost a client more than the well-being of my children that they claimed.
It is normal to have a limit on what we are able to endure. No matter what anyone EVER tells you… You as the parent know what is best for YOUR child. I am not a bad parent or weak for stopping half of the therapies. I am not a bad parent for wanting them to learn through play, even if it is parallel play. I do believe early intervention is the most important time. I gave two years of my life slaving away at it because I love my children more than ANYTHING in this world. As much as my family calls me “Super Mom”, “Warrior Mom” or “Wonder Woman”, as many capes as I have in my closet, I am still human.
I will be sharing Autism testimony every Thursday.
I have 21 years of experience.