Why do I constantly talk about my sons’ disabilities?
To inform people.
Autism is not always horrible, but some parts do feel like it will never end.
IRP (Intermittent Rectal Prolapse) could have been prevented.
I could have gotten help for Ely and MJ earlier, had I understood the signs I was seeing.
I knew something wasn’t right. However, doctors kept blowing me off.
At one appointment when Ely was six months old, I told the doctor at his well baby check up, “He’s not doing a lot of the things he’s supposed to. He’s not sitting up, he’s not wanting to crawl, he won’t sleep through the night still, and he just screams uncontrollably. I don’t know what I’m doing wrong.”
I was devastated. Nothing I did could help my baby. I was begging for help.
What was the doctor’s response?
“I think he has ADHD. He is a strong willed baby and you need to discipline him more.”
Wait. You can’t diagnose a 6 month old with ADHD… Also, how exactly do you discipline a 6 month old???
My mind was blown leaving that appointment. I was so angry and hurt.
I was doing my best and doing what I had been taught, but nothing worked.
I constantly research everything. I kept looking up the things I told the doctor and the number one thing to pop up was “autism.”
I didn’t understand much about autism, as I have said before, I too, thought that autism was either over diagnosed, or too serious to be happening to one of my kids.
I was ignorant of the facts, and naive to believe it couldn’t happen to my children.
This is why I do what I do.
There is such a misconception about these disorders.
IRP was caused by doctors not wanting to do their job.
Ely was severely constipated when he was 3 days old. He was in severe pain and ended up screaming so much he lost his voice. That’s not normal.
We took him back to the hospital every few days and once when we started seeing the prolapses, (which at the time I didn’t know what was happening- but I knew it wasn’t normal!) and we were told he had instussuception (this means the intestines are telescoping and is very deadly if not treated immediately, and would be needing surgery, other than that there was nothing they could do… And sent him home.
A week later there was blood in his diaper, even when he hadn’t had a bowel movement. We took him to the ER and when we told them what the doctor had told us we were told, “no, you couldn’t have been told that, that’s a dangerous disorder and needs to be fixed immediately!”
When I told them what it meant, they were shocked. That is not a common term. In fact a lot of doctors I’ve taken Ely to, didn’t know what that was.
After hours upon hours, days upon days, we finally got him to the right doctor. It took a lot of fighting to do so, but we never gave up.
That’s one thing you can say about autism. One for the good, that is. It builds you into a stronger person. Not just autism though, dealing with any special needs.
I don’t understand when I’m told, “I don’t know how you do it! I could never do this!”
Do what?
Raise a child?
You’re raising a child… You learned what works for your child and you continue with your life. My husband and I however are just constantly evolving to a new method, because reinforcers change on the daily.
We aren’t that much different. We each have daily struggles. Mine just look harder because you’re not living it.
(A genuine message on FB with a friend I have known for about half my life now.)
One of the biggest problems I face is the public.
The stares, the judgements, and the mocking.
Sometimes just going to the local mall turns into a public flogging.
In other words, NOT FUN.
It’s hard to do a lot of the “procedures” that we are taught in certain situations to stop a meltdown because people seem to think it’s hilarious when they see a toddler/preschooler- flip his crap.
*NOTE TO PUBLIC*
1. It’s not funny, and your stares and laughter are NOT helping!!!!
2. My husband and I are NOT bad parents.
3. It is not up to YOU to determine the best method of “punishing” MY child.
Now, like I said, there are parts of autism that is not always so bad.
1. My 5 year old can do homework a 9 year old would.
2. My 3 year old, though a lot of the times he doesn’t use his words a lot of the time, that boy is genuinely smart.
3. MJ is my biggest helper, and even though he doesn’t have to, he makes it a priority to make sure that his brother and sister are always taken care of.
4. When E is bad, he’s very bad. But, if you can make it past that momentarily bad spell, you will get the sweetest E ever. He is our Sour Patch kid.
In the end, no matter the struggles I talk about, I know God is with me and my family. That above all gets me through what most see as horrible.
Psalm 9:9-10 “The Lord is a refuge for the oppressed, a stronghold in times of trouble. Those who know your name trust in you, for you, Lord, have never forsaken those who seek you.”