I Can’t Tell You How To Feel About Autism

My son has autism. He is autistic. Whichever you prefer that I say I guess.

He is the happiest child you will ever meet. He moves through his life with a simple, silly, determined way. His days are filled with hugs, kisses, trains, his Kindle and joy.

Every day is the best day of his life. And as his parents, we work VERY hard to make sure his world is perfect. That will not change.

Lately, I have been seeing, reading and hearing about the unique shaming that happens to parents of disabled children. It will take your breath away when you see it.

It typically comes from people that do not have autistic children. Quite often, they don’t have children at all.

I want you to know that I can’t tell you how to feel about your child’s autism. Nor will I ever. But, you need to know that others will try.

People will tell you that you are doing it wrong. Or that they could do it better. The first time it happens it will shock you. I remember my first time. Cooper was three or four. I finally opened up to a friend and told her how sad I was that my child didn’t speak. I finally stopped sugarcoating it all and told our story. And she looked at me, straight in the face, and said, ‘It could be worse, he could be dead.’

I remember I felt like I’d been punched in the stomach. After that, I stopped sharing for a while. I felt shamed.

I was so confused. My son didn’t do any of the things a child should be doing. He had a boatload of medical issues. At the time he was starting to self injure and hit. He didn’t play. I spent my days in doctors offices and at therapy appointments. Those were the hard days my friend. And I had no one to talk to about it with. The isolation was real.

Today, seven years in, I personally choose joy. I don’t dwell on the differences. I don’t focus on the hard parts. I refuse to be negative.

I choose to laugh as often as I can. I choose to celebrate his unique qualities. I do this because autism is bigger than me. Some days I swear I am just along for the ride. And the hard parts could bury me friends. And I refuse to allow that. I refuse to be sad.

I wake up every single day proud to be his mom. I take on each challenge with energy. His disability both motivates me and exhausts me at the same time.

That’s the truth.

I also choose to talk about the hard parts. The reality. The future.

Having a child with autism, or an autistic child, comes with unique challenges. You will fight for services. You will fight to maintain some sort of normal and control. You will fight for inclusion. And help. You will fight to have your child heard and accepted.

And woven deep into all of that, you will one day realize that your child is different. And that they may never speak. Or make a friend. Or live on their own. They may never be potty trained. They may never understand safety or danger. They may need lifelong care. It will hit you like a kick to the shins when you realize you might be shaving an adults man’s face. Or washing their feet.

And woven even deeper, in an almost secretive way, you may have a child that hits or is violent. You may have to wrestle internally with how to care for them for the rest of their life. You may be injured by them. You will see your child getting bigger and know that you can’t do this forever. Because, you are just a mom. A devoted mom, who is getting older. You will be scared to speak out loud about it for fear of judgement. Or losing your child.

These are the realities of autism. The realities that very few people talk about. I choose too. Because saying it out loud keeps me sane.

I can tell you that I choose to live every day with realistic hope, laughter and happiness. And at the end of the day, after the kids are in bed, some days, I still get flooded with emotions that confuse me. Or I will see a seven year old boy playing with his friends and telling a story and I will plummet.

I can also tell you that I don’t know if my heart will ever truly get over the fact that my son will never lead a normal life. That I long for him to talk so badly I can feel it and taste it. That I would give my arm, my leg, any body part if someone could just tell me if he will be okay. That all I want in this lifetime is to share a moment with my son.

And on top of that, once again, I choose joy.

These are my realities. Realities the some outside of my world refuse to believe.

I can’t tell you how to feel about your child’s autism, but others will try. Just like they do to me.

They will tell you what you are feeling is wrong. They will tell you that you are negative. They will try and shame you into shutting your mouth. That you are a bad parent. That you are raising your child wrong. That a neuro-typical parent could never raise an autistic child in the right way.

I want you to know that no one on this planet can tell you how to feel about your child or their future.

They can’t tell you how to feel based on one sad interaction. Or one sad Facebook post. Or one bad day.

Although they will try, they can’t REALLY shame you because they don’t live your life. They aren’t in your home. They don’t know your reality. They don’t wipe your child’s tears. Or manage behaviors. Or change an adult’s diapers. Or not sleep. Or sit at that IEP table or doctors office and demand better options.

They don’t know your day-to-day.

My son’s autism is very different than every other child’s autism. I’ve learned that along this journey.

For example, my son doesn’t have long meltdowns while some kids rage for hours. He isn’t violent. He doesn’t poop smear. Every day is the happiest day of his life. But, in saying all that, we can’t leave our home safely. He can’t go into stores or restaurants. Parks make him anxious. He refuses to walk. When he gets anxious he can get dangerous. We feel the isolation more than most. He doesn’t sit. He doesn’t do anything but go on a Kindle. Oh how I long to sit with him and interact. Or play a game. Or go for a walk. Or bring both of my boys to a movie.

Our stories are all different. And as parents, we get to choose how we feel. That’s the truth of it. We are allowed to have hard days. Because if your life is like mine, they truly are hard. And saying that out loud doesn’t make you weak or mean you love your child any less. It just means you are having a hard day. And you are human.

You are doing an amazing job friend. What you are feeling is real. And no one can tell you how to feel. And if they try, remember, that they aren’t in your home for 3 AM wake ups or cleaning fecal matter off walls. They aren’t fighting your battles.

They don’t know your story. Only you do. And you are doing a great job!

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Comments

  • Joan

    March 25, 2018 at 9:51 am
    Reply

    I saw a video clip today of you talking about your son and if it is going to be OK and you finally came to […] Read MoreI saw a video clip today of you talking about your son and if it is going to be OK and you finally came to the reality of it. I have two autistic Sons, I was told to give up on them institutionalize them and walk away. Tell my sons are much older Josh is 32 TJ is 30 and back then not what you have today. I never gave up on my son's I want you to do both of my sons have full High School diplomas full credits they both can read and write Avid readers. My send Josh has made the most strives I had to place him at 13 he was so violent and then kept trying to kill me and he was suicidal from the age of seven he has tried to commit suicide 7 times. I came to the realization of not if he was going to commit suicide but when and when he was going to succeed. I want you to know I worked with him constantly because I placed my son in a group home does not mean I was never there everyday working with him taking him to every doctor appointment I just could not stay awake 24/7. My son now is 32 years old a happy young man who has graduated from high school has a full-time job works is in a Independent Living Program and hopes to be independently living one day and will be starting College soon. There is so much help out there never give up Mason TJ is 30 years old how's more intellectual disabilities is myrrh challenged physically but is a happy young man who works also lives in a group home now does outside activities is happy does things on his own. I did all of this with my sons I never gave up and I did this as a single mom yesterday we were in a special Olympic basketball competition for two days and they were both awesome when taking a gold medal I want taking a silver medal it's amazing what they have accomplished in their lives I want you to know there is so much hope out there we have to sometimes admit we can't do it all by ourselves and we have to ask for help for me that was the hardest part knowing that I could not be super mom. Never be afraid to ask for help never be afraid of what your son might be always know that what he accomplishes is absolutely wonderful I waited tell my children were for to hear the word mommy and I love you the best words I've ever heard Read Less

  • Faithmummy

    January 6, 2019 at 4:03 pm
    Reply

    I so needed to hear this. Thank you my friend ❤️

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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