I DON’T WANT TO SURVIVE. I WANT TO LIVE.
CAPTAIN in WALL-E
People give you statistics, but they don’t offer hope. You have read the statistics; you have heard how hard autism or special needs children are on marriages. And few people talk about beating the odds. We hear about the percentages of marriages that end in divorce. It really doesn’t even seem that surviving autism is a possibility. And no body suggests thriving with this diagnosis. Heck, you can’t even think about that because you are just trying to remember to breathe.
Breathe. Yes, You! The mom with the “broken” child. That’s how you feel. I know because I felt that way. “What’s wrong with my child?” He won’t talk. And he doesn’t respond when you ask questions. He doesn’t play with other kids. And watching him makes you lose your words too. There are just no words for how you are feeling. And that person you are married to – he blames you. Or maybe he doesn’t, but since the words are all gone you interpret the silence as an indictment. You don’t even know how to talk anymore, and the happy days are gone. You aren’t the statistic. . . but your heart feels the divide.
Surviving Autism Seemed Impossible
And then somebody says, “Do you know how many marriages end in divorce?” Was that really supposed to help? But you don’t really care about statistics, because all you care about is your child. The child that you want to reach. I understand that. And I understand that the doctor dismissed your concerns at 18 months, and at 24 months. Then again at 36 months. And there really isn’t anyone who listens. And the ones that give advice, don’t give hope.
Additionally, the ones that give advice, tell you how to feel. And they tell you what you should do. Therapies. Appointments. Things to keep you busy. But nobody takes care of your heart. And there is no formula for this. I started this blog to process my thoughts and feelings about my child. And from 2009-2014, I wrote about a dozen blog posts, and none of them were about my child. And I didn’t write about it because I know too many people who would give up everything to have a baby – even an “imperfect” one. So my posts seemed whiny and less than grateful for all I did have. I sat there and stared at the screen. And I sat there and stared into space. And I sat there. Finally, I wrote, but never hit publish.
Then I hit delete. And people told me that I should share, so I have told you about my son and autism. But I have not explained about the early years. The years that we still haven’t talked about. The years that hurt my heart to think about. For years I couldn’t talk. The years that I lost my voice too.
I haven’t written about the pain, the loneliness, and the isolation. Nor have I written about my marriage falling apart. I had a wonderfully happy marriage before. I had a “perfect” family – whatever that means. We had a “normal” life. Three kids, a house on 5 acres, a business that was great.
And then we had Marcus. He was a difficult baby and toddler, but just as he was settling in and life was returning to normal. Then we had Jack-Jack. And life has not been the same since. Jack-Jack is now 12. Twelve years is a long time to hold in the tears. Twelve years is a long time to pretend that something doesn’t exist. It is such a long time to miss your best friend. And not be able to talk.
The early years are just too painful. The middle years are a blur. The now – the what you see right now seems like we are living an ideal life., and it does appear that we are surviving autism. And I would be remiss if I didn’t set the record straight. Because people think we have beaten the odds. They think we have a magic formula. But most of the time we tread water.
We see the families whose child writes a thesis at age 10. But the reality is most autistic kids are not accomplishing things like that. Most of our children are walking in circles quoting some lines from the movie of the week. Some of our children are sweet and kind, but what you see today in my house, that was not what was.
Surviving Autism is an Option
So I will answer your questions, and I will eventually talk about the early years. The years that weren’t really living. I will share with you the good, the bad, and the beautiful. I will show you the joy I have found in the middle of this messy life. And I will give you a hope for the future, a hope that one day you will breathe again. But I won’t pretend it won’t be incredibly lonely, treacherous and difficult on the way there. And I won’t pretend that life is normal. I won’t pretend that I have all the answers. And I won’t pretend that my marriage was thriving on the journey to here.
I won’t say we have gotten back to normal, but I will say we are doing more than just surviving autism. And I will say that after the storm sometimes the sun shines brightly, and there is a rainbow. You appreciate the little things even more after the storm. And you sometimes find joy comes in the morning.
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Until Next Time,
Patty @ A Mother’s Random Thoughts
Homeschooling mom – 26 years and counting
Movie reviewer/Travel blogger