It could be worse . . . I have repeated these four words while lying in bed crying, feeling helpless over my son’s recent autism diagnosis.
All my hopes and dreams for his future no longer exist. What’s going to happen?
I can’t explain the feeling that sets in when you learn your child has a lifelong disability. The feeling of panic overtook me. Some days it consumed me.
The sleepless nights and anxiety take a toll.
It could be worse, he is healthy.
Will he be a victim of discrimination, taken advantage of, mocked, or hurt?
My heart literally ached. A pain I can not explain to you.
But someone’s child could be dying of cancer, I should be grateful. I shouldn’t be crying. It could be worse.
I was in denial.
Well, he is “higher functioning.” He won’t struggle as much compared to someone who has more severe challenges with autism. It’s going to be OK, he’s high functioning.
I feel so guilty even saying that as if it brought comfort to me. I was wrong. It won’t be easier for him. I was labeling him.
There is no such thing as easy autism.
I was in denial. I am so angry. I am so sad.
We were told our 3-year-old son also has severe childhood apraxia of speech two weeks after his autism diagnosis. It made me feel numb, devastated, and terrified all over again.
A whirl of emotions raced through me. I raced to the bathroom just so I could cry—I couldn’t let him or my husband see me crying. I am expected to be strong, strong people don’t cry right?
Another diagnosis, another struggle my son has to endure. This isn’t fair for him. Why?
Everything does not happen for a reason. A quote I personally can’t stand to hear or be told. He literally has to fight for his voice everyday. He has to fight to do things that come so easy to his peers.
He tries so hard, it’s heartbreaking. It’s absolutely heartbreaking.
Being able to speak, the thing that comes so effortlessly to us, is something so very hard for my son.
I just want to hear his voice.
I want to know he can advocate for himself when I’m gone. I think every special needs mother thinks, I can never die, who will care for my child like I do?
Why is this happening? I did everything right. I’m scared.
Will I ever hear his sweet little voice say the word we as mothers can’t wait to hear, “momma”?
Apraxia and autism. Why both?
I couldn’t say his diagnosis out loud. I wasn’t ready. I couldn’t say my son is autistic. I couldn’t say I’m a special needs mother. I couldn’t say my son is non verbal. At least not yet.
I’m angry because my son can’t be a typical 3-year-old who gets to be a kid. My son spends his days at speech therapy, PT, and OT while other kids are playing. His first friends will be his therapists. Not the neighbor kids.
I’m angry and no one understands.
I am angry this is happening to my child. I’m angry because I feel so isolated. I am angry I feel like I have to cry in private. I am angry because I feel as if I’m expected to be strong. I am angry because I feel no one cares.
I am so sad. I am hurting and hurting so badly for my son. I am terrified. I am so angry. I am so sad
It’s going to be a hard journey. I will get through this. Not only am I an expert when it comes to my child, I will become and expert in autism and apraxia.
People will judge me and some will give me their unwanted opinion. Breathe.
So many will never understand. Not even family. They can’t. How can they? Unless they live it. It’s OK. Because everyone doesn’t matter, Rocco matters. He is not defined by his diagnosis. This isn’t a death sentence. His future can still be successful and bright.
Autism is a small part of him. There is so much more to him. I hope his peers and others see this.
I would never want to change him, ever.
Society makes you feel as if autism is a terrible word.
I’m proud of my son. I’m proud to be his mother. I will advocate for him. I will fight for him. It’s impossible for me to put into words how much I love my son. It’s a love like no other that only a special needs mother understands.
I will never give up. He will never be made to feel as if he should be ashamed of who he is. My son is not broken, he doesn’t need to be fixed.
My beautiful son Rocco, he is autistic and I am a special needs mother!
I am honored to be his Momma.
*Acceptance in human psychology is a person’s assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it or protest it. The concept is close in meaning to acquiescence, derived from the Latin acquiēscere (to find rest in).
Originally published on Finding Cooper’s Voice