Before I had two children with disabilities, I had it all figured out. We would do playdates at the local parks, host birthday parties at home, I would be on the PTA.. I had it all figured out. But then, things changed and my plans didn’t exactly line up with how I envisioned they would.
Instead, I started to wonder how to handle the isolation of parenting disabled children.
Because, dear friends, that is one thing they really don’t tell you when your child receives their diagnosis.
What They Don’t Tell You About Isolation of Special Needs Parenting
When my daughter was diagnosed, I had some inkling of what to expect. We would go through a series of evaluations and from there, we would prepare for her IFSP meeting. It all seemed fairly simple. And, in theory, it was simple. But life doesn’t seem to care about simple, you know? Life doesn’t care about your expectations.
Or at least that’s how it all eventually unfolded.
Things were definitely different when my daughter was diagnosed.
I was older, married, and you would think — I would be more prepared.
Spoiler alert: I was not.
When my son was diagnosed, I was younger and I’d already had the experience of going through the NICU with him. That NICU parenting tribe? We are a whole different breed. And while I have lost touch with most of those moms, I know that having them there made a huge difference.
So why was it so much different?
Well, for starters, the circumstances were different.
And, equally important, my daughter’s diagnosis was different from my son’s diagnosis.
Granted, I was also pretty clueless when it came to my son’s diagnosis but my daughter’s diagnosis really threw me for a loop.
I had watched her development closely and we knew that there was something wrong. So maybe it wasn’t too much of a surprise that she would also be diagnosed. We just didn’t know what that diagnosis would be.
And then, after receiving that diagnosis– that’s when it all started to fall apart.
All of the dreams and wishes and hopes that I’d had — the imaginary life I had created in my head about serving on the PTA, being a Girl Scout mom. Everything was done. The bright and shining future that I’d built up? Vanished.
Being devastated doesn’t even begin to describe it. In fact? That was the tip of the iceberg.
The Unexpected Isolation of Special Needs Parenting
It went beyond that, of course. I went through my own grieving period for those hopes, wishes, and dreams. I went through my own guilt trips and depression reared it’s ugly head on more than one occasion.
But, I still pulled myself through it because I had to. I mean, really, who else was going to go through this? If it wasn’t me than who?
So, I poured myself into it. I looked for every possible resource that I could find about parenting an autistic child. I looked for every possible resource that I could find about parenting a girl on the autism spectrum.
And let me tell you — all of this digging, all of this researching? Usually it’s one of my favorite coping methods for dealing with something difficult. It’s one of my favorite ways to distract myself from all of the crap that’s in my life. But this? Far from from it. All of this researching was only leading to further frustration because I couldn’t find a damn person who had gone through it. I couldn’t find a shared experience.
I couldn’t find a damn thing.
So now I was just getting even more frustrated with the situation and feeling more alone by the minute.
I couldn’t possibly be the only parent of an autistic toddler.
I couldn’t possibly be the only parent of an autistic girl.
I couldn’t possibly be the only parent of a severely autistic child.
And yet, that was exactly how I felt.
I felt alone, isolated, and navigating the forest without a freaking compass.
Why People Don’t Talk About the Isolation of Special Needs Parenting
I wanted to know all of the ups and downs that came with parenting an autistic child. I wanted to know about the good times, the bad times, and the really freaking dark times where you start to wonder how you’re going to survive this day.
I wanted to know everything.
I wanted to know that someone else was struggling just as much with being isolated as a special needs parent.
But I found next to nothing.
People simply were not talking about it and yet, this is a very real problem.
We, as parents of special needs children, are isolated.
Over the years, I cannot tell you how many times I’ve wanted to take my daughter somewhere only to stop because I know that it would just be a miserable experience for both of us.
Her because of all of the excess stimulation and me having to deal with all of the ignorant stares and whispers. I cannot tell you how many times I have sat down in the corner and cried because I just did not know what the future was going to be like. Or because I couldn’t pick up the freaking phone and vent to someone who understood.
People do not understand unless they have gone through this or unless they are going through it.
And that doesn’t just go for the special needs parenting but any number of things.
Unless you are going through it or you have gone through it? You will not get it.
You will not understand the frustration.
You will not understand the struggle.
You will not understand the small victories.
You will not understand the tears.
You will not understand the isolation.
In my new autism diagnosis toolkit, I am including a checklist, printable timeline, and several other resources. These are the things I’d wish I’d had when my daughter was first diagnosed.
Will the isolation of special needs parenting every go away?
Eventually, hopefully, you will find your people. You will find that group of people who get it. You will find that group of people who just understand.
You will find those people who have been there.
After all, you have found me.