As a kid, I remember spending my days playing outside, eating ice cream bought from the Good Humor man, swinging as high as I could before jumping off, playing softball in the intersection, catching lightning bugs and playing freeze tag in the dark. These are things I assumed my kids would do and enjoy. In a way, to me, they define childhood.
However, my boys’ childhood looks dramatically different. For my oldest, his childhood has involved intensive therapies, starting school full time at the age of three, doctors visits, blood draws, bitter and smelly supplements, and lots of tantrums. I’m not sure if he understands how much he’s been cheated out of because of his Autism. There are no real lazy summer days full of fun and adventures like on Phineas & Ferb, or like I experienced as a kid. I had no real rules. About the only rules I had were to respect my elders and to have fun. Our oldest has a whole slew of rules. My boys were both cheated out of what I think childhood should look like. The little one doesn’t have it as bad, but when he was a toddler, he was dragged to and from therapy with his brother. He got to spend his time in waiting rooms with old broken toys and no one to play with. When he started asking for things, he would nearly always hear, “No, it’ll upset your brother” in reply. I’ll never forget when we dropped off his brother and this little voice asked me, “Mom, can you please buy me some friends? I want friends to play with. My brother doesn’t play with me and I want friends to play with.” In short, our boys are deprived of what our generation and generations before us knew childhood to be like.
Our nine-year-old was always stubborn. He’s a lot like me in that way (must be the Aries in him). The older he got, the more defiant he became. He started refusing his supplements, boycotting therapy, and was/is all-around obstinate. I was in “fix him” mode and all I really wanted was for him to be this happy little boy again — to see him laugh and play and smile at me. He still had a long way to go, but he started flat-out refusing all our interventions. He was so very oppositional with me one night that I was at my wits’ end with him. I sat him down and explained that I was doing what I thought he needed to get better. His response to me was, “No one can help me. No one can fix me. I’m broken. Leave me alone.” I was crushed and devastated. No one should feel that way, especially a seven-year-old boy! Since we were in one of the longest plateaus we’ve ever experienced with our ‘non-responder’ son we agreed that we would take a leave from biomed. Being the stubborn person that I am, still in fix-it mode, I turned to homeopathy.
This began my realization that as much as I wanted him to be this happy little boy, I wasn’t giving him the room to just be a kid. I have always been scared to death of the idea of taking the kids on vacation or camping. As much as I want to do those things, it just scares me. What if he tantrums? What if he hates it? The questions just kept coming, fueling my anxiety. Thank God for my mom. She got this idea that she was going to start taking our family on a vacation each and every year to the same place. Maybe the first year will be rocky, but then he’ll know what to expect the following year and maybe it’ll get better. So, we spent the last full week of school on vacation on an island, and it had to be one of the rare times we could see our son as if he was neurotypical. The Autism was gone. He was a kid. A happy little kid! Jumping in and out of the waves, smearing sand on himself, running up and down the beach laughing at the birds that were trying to steal bait from the fishermen. He was happy! Everything we ever wanted.
He’s still far from being an all-around happy kid without a care in the world, but we actually think we can safely take more vacations with him and maybe try camping this summer. Just last year we taught the boys how to catch lightning bugs. They discovered on their own that if you smash them when they’re lit up, the goo will still keep glowing and you can use that as glow in the dark war paint! We roasted marshmallows around our fire pit and watched the bats flutter around the backyard eating those pesky mosquitoes none of us like. My husband tried to point out different constellations and get them thinking about how big this world really is. It was great. We are so looking forward to living more like a ‘normal’ family and enjoying life. Maybe we can salvage what is left of their childhood.
As much as my son insists that I need to leave him alone — that he’s not fixable — I intend on learning as much as I can at Autism One this year. I never get to stay for the full conference because that is when my mom takes us all on our much-needed vacation, but I will definitely be there as long as I can, to learn as much as I can, to get my boy back and to give him his childhood back. I know he can still get better. There are things we’ve still not tried and new therapies coming out all the time. He can fight me all he wants, but if I didn’t do the things I do, he wouldn’t have the ability to protest. He’d still be locked in his own world, self abusing and oblivious to the world around him and most of all… not experiencing a childhood he deserves.
~ Cupcake
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Autism has stolen so much from us all. For me and I’m sure many Moms, this is truly one of the saddest things. Something to fight REALLY hard for.
Just wondering…
re “Childhood Stolen”
what folks think…
My childhood, too, was much like the authors…
very unstructured and very free to learn..
I am wondering if modern society and the huge push for organised sports, organised this, organised that, robs all children, and maybe especially children tending towards autism, of a certain type of brain developement? It seems to me that a brain which spent ten or so years in the type of childhood of the author, might have different neural connections, etc, than one spent in ten years of very structured settings – daycare – organised activities – etc.. ?
I read this and I identified completely with it. I feel my son was robbed of the fun of childhood. We have reached the point where he also is resistant to any therapy and doesn’t really want any part of this mess anymore. He wants us to leave him alone and “stop trying to change him”. I think the older our kids get the harder this is. They don’t understand why we are doing all these therapies. After all they don’ t know anything different but the way they are now. We had begun the family trip to a remote camping location on a beautiful river a few years ago. It’s my son’s solace. The one place he loves. He found happiness there. He learned to fish, hike, relax and enjoy himself. He is making friends now and we will get there. But I will never get past what was taken from him or all children with Autism.
So hard for me to read that the feelings I felt so many years ago are still being felt by parents. So frustrating. Years and years of stolen childhoods. Autism stole the life my son was meant to lead. Not many dare to tell me that this is God given purpose any more. Most know how I feel. God gave me a perfect being…MAN gave him Autism. Thank God for your Mom, she should write an article about being supportive for all to give to unsupportive family! Or she could adopt all of us!
Several years ago, I was crying on the phone to my brother. You know, my little brother who didn’t have a responsible bone in his body. I was stressing about something or another with KJ. When am I not? Anyway, my brother asked me a very simple question.
“When was the last time you actually played with KJ?”
“I am on the floor with him all the time.” was my response.
“No, Jan. Not therapy. Play. When did you last play with KJ?”
Talk about a light bulb moment.
KJ told me the other day, “I have to find some friends”. This was in response to the fact his older brother was spending the night with a friend. It broke my heart.
We live in a very small town and tend to be very isolated from others. But I am realizing I have cheated KJ out of so much…a childhood and friends.
KJ turned 12 today. We invited all 4 students in his class to a party on Saturday. Only one response so far. And that was a no. I am hoping, for KJ’s sake, at least one will say yes. Oh, God, please let someone say yes!
Jan,
My son Collin(autistic) who just turned 10 had a birthday party last weekend with 3 friends (Yes I said friends) who are on the spectrum. It is the first party we have had since he was 3 and that was all family and cousins. (disaster) A local photographer did photo shoots and small stories on her blog in April. A few children had so many common interests as my son. I reached out to the photographer and asked if she would try and connect me with their parents. The parents were very receptive and just as excited as I was to help their child make a friend. I will be honest I felt a little like the stalker mom trying to find her son a friend but hey it worked. We set up a meet and greet, then a play date and wow we have friends to call for future plans. Bonus for me I get to chat with other parents that “GET IT” becuase they live in my world. Don’t be afraid to step out of the norm and be a little bold.What is the worse thing that could happen? Hang in there!! Had to share these amazing photos and stories! http://www.carrieanciauxblog.com/
What happened, Jan!? Did someone come over?!
Blaze:
No, no one came, except family. But that is ok, because KJ was happy with who came. They are the ones who have made an investment in KJ.
However, I think I will take Tammy’s advice. The bus driver will deliver a note to one of his classmate’s family. I hope this will be something good.
Thank you all for posting on TMR. I love reading your comments. This is about the only blog I read the comments on. All of you are so positive and uplifting. And we sooo need something positive in our lives!
Thanks Again!
Jan from Florida
As usual..I am crying. Party becuase as I read this, my son called me and said, “Momma, I just saw our family, I just saw the old us.” It seems now that school is out, the siblings of special need kids are in that hard place of wanting normalcy and having to deal with a siblings melt down. My now 27 year old son told me how he stopped in the library yesterday and it was summer reading sign up time for the kids. He said there was a little boy just like him, really into the program and full of questions, and as he listened to this kid, remembering being 7 and so excited about summer, the air was split with that familiar high pitched gut wrenching scream. The little boy at the desk glanced around in a panic and talked faster to the lady signing him up. My son turned to see a mom with bags under her eyes so deep they seemed to carry more baggage than a human should have to be exposed to. In her arms she held the owner of the scream, a little girl too big to hold, but out of control and in the beginning stages of a full blown melt down. The Mom called to the little boy to come on and leave that Sally needed to go. The little boy burst into tears and said,” Just one time Mom, can’t I be important? Don’t I count? as he left the library without completing his summer reading program paper work. My son told me how he wanted to run after her and offer to go back in and help her son get his books, becuase HE had been that brother. Because he knew what it was like when the little sibling was autistic and had a melt down every single time you went to do anything. Sadly he just froze and did nothing. He watched as Mom got both kids in a van and drove off. Nobody wins when one child as autism…I pray for every single family out there. I pray your NT kids survive. I pray Mom’s make it another 24 hours. Most of all..I pray for our vaccine damaged children….and pray you all see the light of day someday.
Beautiful thoughts, cupcake. Enjoy your upcoming vacation…..
My ASD son started off the current spike back in the 1990’s. We spent our time shelepping back and fourth to psychiatrists, behavioral therapies, doctors. He had no friends. Not that now is really any different.
As I watch my friends kids get their driver’s license’s, have girlfriends, sit for the SAT’s, go to the prom, and off to college, I feel so bad for my son who’s life was robbed by a DTaP vaccine back in 1994, when he was only 3 years old. Thanks Big Pharma for insisting we needed protection, and then kicking him in the butt, as the door slamed on him, and the continual kick in the butt every time you say that vaccines cant cause autism. That is more like a slap in the face.
What a smart and generous mother you have! May you have many many more vacation victories.
Beautiful. I love the pictures! The buy me some friends quote really tugged at my heart.
Looking forward to meeting you at A1!
Ana Maria Abba 🙂
Keep up the good work, Cupcake!