My Son’s Disability Isn’t Always Beautiful
A very nice woman approached me over the weekend and thanked me for talking about autism. She thanked me for being honest and not sugarcoating it. She thanked me for keeping it real. That conversation reminded me why I do what I do. I refuse to lie about my son’s disability or downplay it to make people feel better.
When my son was first diagnosed I dove head first into helping him. I turned to other bloggers, Pinterest and Facebook groups because I couldn’t find anyone in real life that had an autistic child. I felt alone, isolated, confused and scared. I knew my life was hard and confusing and I wanted to find other parents that were going through the same situations. There had to be other parents who had children who didn’t sleep. Who were never content. Who were nonverbal. My life was paperwork, doctors offices, therapy appointments, stimming and self injurious behaviors. My life was nothing like my friends. But I knew in my heart that there had to be other parents who had children with unknown futures. Except, they were no where to be found.
All I could find were memes on Pinterest talking about how beautiful autism was. I found quotes that told me to join my son’s world. I remember being so confused. What was I doing wrong? I would agonize and kill myself trying to get my beautiful boy to join our world. Nothing worked. I want you to know that I struggled to find the beauty in it. And that scared me terribly.
I had a beautiful son that at age three had never spoke. He had no desire to communicate or be touched, hugged or kissed. I soon learned he was severe. No matter what I did I couldn’t connect with him. As a new mom, I struggled to find the beauty in that.
Today, my son is almost seven years old. We are in a much better place. He is still nonverbal, extremely rigid and anxious. But he is also happy, smart, funny and the most beautiful soul I have ever met. I thank God for him every single day. He is mine. And in saying that, his disability is extremely challenging. It controls our whole life. Every decision is made around Cooper. And every single day his autism ‘wins’ at some point. That’s the truth. We have highs and we have lows. And we survive. I’ve also noticed that as Cooper gets older the emotions and aggression are getting more intense. And you’ve never known confusion friends until you’ve seen your child self injure themselves. Talk about heartbreaking. And their ain’t nothing beautiful about that.
This is why I talk about my son’s disability. I want other parents to avoid the confusion and fear that I went through. I believe in talking about autism in a truthful way. I can say in the same sentence…My son is amazing and I love him more than anything AND autism is really, really hard. I believe that is okay to say.
In this video I discuss a very hard topic. My son’s disability isn’t always beautiful. And it’s okay to say that.
https://youtu.be/vWTduUsmlGY
Kate first of all I want to say I applaud you for speaking the truth my family understands %100 what you mean when you say autism isn’t beautiful all the time my brother Paul is the baby of our family he’s it 34 year’s old and serverly autistic we aways wonder what would it be like it Paul would set down Whit he’s 4 sisters including me being the oldest and he’d full time care giver it he could set and have a cup of coffee with us and just talk let us know how he feels about us it’s the lil things that bother me the most that people don’t understand I was do my laundry and
You are an amazing young woman. I am interested to know if you have spoken with elderly parents with autistic grown children, We know it’s HARD.
I’m going to finish my comment I was doing laundry and washing my son’s clothes and Paul’s close checking the pockets like I always do and my boys had an in print of their wallets on their back pockets of their jeans and as I was getting ready to check pauls pocket I was like nevermind he doesn’t have a wallet. It may sound stupid but it broke my heart that he doesn’t have a driver’s license we all have grandkids and he doesn’t a girl friend he never have he just sets in he’s room and hums and screams and collects shampoo bottles cereal boxes doesn’t care for anything else just what he has in his own world he hits he’s self in the stomach we don’t know if he’s in pain or why he dost it I have to shave him give him a bath and it breaks my heart breaks my heart he’s like a baby to me my dream is for him to be a part of my life but like you said I guess autism wins thank you Kate and I can finally share my heart what’s someone that understands aways praying for Cooper keep up your blogs you have know idea how much it’s helps
I cannot believe anyone flames you for anything you say. You speak so from the heart, and it is very apparent how much you love BOTH your boys. Any flamers are just not being honest with themselves, so pay them no mind. I do not have any atypical kids, but a good friend of mine who desperately wanted a baby and finally got one after being under a doctor’s care, had her son…. and when he was born, they were surprised to learn he had Down’s Syndrome and a club foot. They were devistated, but then as their son aged, they also discovered he was on the spectrum. Their love for their son was fierce and every time I saw her, I asked about him and how he was doing, because I knew how much she always wanted to be a mother, but it also was hard to ask because I felt so guilty… for being blessed with typical children, and because I felt so sorry that this had become her lot in life. As their son grew, the strain on their marriage became too great and they split up after more than 10 years, although the father was always good with their son during his shared custody. Finally, when the son was 18, mama could no longer physically handle him during his outbursts by herself, so they placed him in a home where he actually is doing very well. It is only a mile or so from their homes (it’s a small town) and he is learning a bit how to do things for himself. I had always thought the Downs would be the bigger issue in raising him, but she said that was fine – it was the autism that kicked their butt time and again. So, although it was not my personal experience, I have seen enough of it from various sidelines to feel nothing but awe and humility in what the parents of autistic children go through. You have my utmost admiration.
I admire you. I’m a teacher with special needs. I love each and everyone of my kiddos like my own. I have cried and laughed in the same moment. You are my hero. Remember you are doing the best you can in the moment . You my friend are the winner!
I appreciate your honesty. My son is 12 and has autism plus an intellectual disability. His little brother is 9, is a cub scout, an athlete, and a little social butterfly. The autism diagnosis came at 4 years old so we’ve been doing this awhile. The rigidity and repetition of sounds can wear down even the gentlest of souls. We have been in public school special education, a private ABA center, and back to public school special education and he is doing well because of a stellar teacher and staff plus in-home ABA twice a week for functional life skills. After a 2 year waitlist, we recently added a service dog to our family. Our son doesn’t understand danger, he elopes in public, and he is always getting bigger and stronger. To physically restrain/manhandle him in public was constantly escalating frustration and meltdowns. It is hard even with all of these supports in place because mostly he doesn’t really want to participate in the majority of what everyone else is doing.
All of the emotions and concerns you voice resonate, and like you the courage and fortitude to keep opening doors, talking to other parents, informing other parents sometimes helps to dissolve my own frustration with my and his limits. We are only human. But we are designed to be compassionate. I thank you for being such a voice in the world, Kate. 🙂
As an OT, I couldn’t agree more about the importance of being honest. Sugarcoating the challenges of autism doesn’t help the community move forward or spread awareness about the reality of the condition. For those that don’t have personal experience with autism, people like you are so valuable for coming to an understanding of what life is like. Thank you!!
Best,
Diana
http://www.thesensorytoolbox.com
My son is very high functioning and there are days I feel so overwhelmed. I can’t imagine it being worse and sometimes feel guilty for being overwhelmed when I know others face far worse…but your comment that most days Autism wins rings so very true for me right now. I am so tired of hearing how people won’t change their child’s situation. If I could keep my son and take away his difficulties I would in a heartbeat. If I could give him the friends and relationships that he does want, but has no idea how to make them work, I would. If I could make his three sisters safe all the time around him, I would. If I could take away the fear that his younger sisters might have the same issues, but we haven’t seen them yet, I would. If I could help him speak when he’s upset so I didn’t end up with black eyes or principal’s offices trashed, classmates scared, or screaming heard in our neighbor’s houses, I would. There is so much I would change…so thank you for being honest…because this is far from the life I would want for him, for us. It doesn’t mean I won’t fight every battle and that every day I will wake up hoping for a better day than yesterday, but you’re right. It’s hard. It’s good to know we aren’t alone.
God bless you and your family.