I call myself a Special Needs Parent. Not because I have special needs, but because I have a child with them. I prefer the term "Special Needs Parent" because it helps me to relate to more than just other parents dealing with Autism.
Every parent with a child with special needs can relate to each other on some basic level. The frustration, the isolation, the guilt that comes with having a child who is "different".
There's the blame that other people put on you, whether for somehow making your child the way they are, or with dealing with their disability poorly.
I've had to hold my tongue and fists to keep from getting in an altercation with a distant relative over how to handle the fact that my Autistic child didn't want to stand for a family picture.
I've heard the other kids at school talk about meeting up at each other's houses to play. My child, who barely speaks and has been toilet trained for only one year at the age of 8, has never had that.
I thank God that I had two children a year and a half apart, because it means that Noah has someone to play with. Most of the time he prefers to play by himself anyways.
Seeing other mothers greet each other with affection and familiarity as they wait for school to close.
Having strangers come into the house for therapy, and having to cancel on social outings because of these appointments. Having to be ready to leave any situation if Noah can't handle it, and often myself or Derek miss out on events because one of us will take Noah for a walk, so the other can stay and enjoy themselves.
Fighting with the government for services and funding. Losing and replacing staff and therapists, and dealing with the long process of getting a new person up to speed on Noah's progress. Never mind getting Noah to the point where he will actually participate with the new person.
These are things Special Needs Parents have to deal with. I'm not even going into the physical strain of having a child with a physical disability, because while I can see and understand that it's hard, I have never lived that. I'm ashamed to admit it, but sometimes I thank God that Noah doesn't have physical limitations as well. Some days I am thankful that Noah has Autism instead of a serious illness. It's terrible, but at times it's what gets me through. Whatever I have to deal with on a daily basis, I know that dealing with a sick or dying child could be so much worse.
But here's one thing I think I've done right, and am still doing right: I accept my child, and love my child, as he is. And I do not shy away from the fact that he is different. I do not shy away from telling people that he is Autistic. Because that is an integral part of who he is as a person.
Maybe it's because I've always felt like I was different, and I've come to embrace that about myself. Maybe it's the other way around: I came to accept myself after accepting Noah. I couldn't tell you either way.
Here's some unsolicited advice: If you think there is something 'off' about your child, talk to your doctor. If you think your child is normal, but people keep telling you they think something is wrong, talk to your doctor. You as a parent have great instincts, but sometimes you want your child to be normal so badly that you can't see that they're not.
You are doing your child a disservice by not embracing their uniqueness. And you can embrace your child's uniqueness while still getting them the help that they need to succeed. Noah's speech and psychology aren't to turn him into a normal child. They're meant to help him be the best Noah he can be. They've helped him to make eye contact, hug, and speak. They and his Occupational Therapist and his aides over the years were instrumental in teaching him to dress himself, in toilet training, and in following directions. These are things that are integral to his success, and that I'm not sure I could have taught him without help.
Noah was diagnosed at the age of four, but he was receiving services to treat his Autism for over a year before that, because he got into a preschool program for children with speech delay. Early intervention is key. But so is acceptance.
It's okay that your child is different. It's awesome that your child is different. Don't deny them the chance to be themselves out of a need for them to be normal. Normal is boring anyways.
And don't be afraid or ashamed to tell others that your child is different, and in what way. You'd be shocked at the amount of people I've connected to because I was brave enough to speak about my child's Autism like it was not something to be feared. I've been able to give advice, ask advice, and just to commiserate with people just like me, all because I've embraced that part of my identity is now that of a Special Needs Parent. Yes. I capitalise it. Because it's important.
Another thing: It's okay for other people to know your child as different, or Autistic, or disabled. I tell people that Noah is Autistic as often as I can. Not because I want pity, but because if someone, whether it is a child or an adult, is going to label him, I want them to label him correctly.
Noah is exceptionally well-behaved (for the most part) for someone with Autism. He has his moments, and they're not fun or pretty, but those moments are the exception, not the rule. I would rather someone know him as Autistic, than think of him as badly behaved, belligerent, or a bully. I don't believe that should excuse his bad behaviours, but I do believe that it can help people to understand why he does some things, and give him a little more leeway because of that.
I know the prospect of being a Special Needs Parent can be terrifying. I was there. But it is so much better than to pretend to be a Normal Parent, and have people mislabel your child.
If you think there's something wrong with your child, get them checked. It is very likely that you're being paranoid, and your child is just fine. But make sure, just in case. There are people out there waiting to help any special needs child to be the best they can be. And if you're one of those people who are about to become a capitalised "Special Needs Parent", there's nothing more they'd love than to help your child succeed.
Don't fight it. This person is your child. A diagnosis of some sort or other doesn't change who they are as a person. You loved them before doctors started using big words when referring to them. That doesn't change. And if you ever feel the need to reach out to another Special Needs Parent, send me a message. I'm always willing to talk.
Love,
-Nan
