A Look Inside An Autism Mother’s Mind
Can I tell you something? I’m tired of autism.
I’m tired of talking about it, and writing about it, and thinking about it, and scrutinizing it. I am especially tired of listening to it.
I’m tired of wanting answers no one will ever be able to give me.
I’m tired of hearing people tell me how good my son Jack looks and how well he seems and then for some weird reason I feel the need to correct them and say things like he really isn’t doing that good and he barely sleeps and I cannot even handle the stimmimg for one more second!
I’m tired of hearing people tell me how rigid he can be and how he seems out of sorts and then for some weird reason I feel the need to correct them and say things like he isn’t always rigid just the other day he suggested we go to a different movie theater which is a really big deal for him!
I’m tired of autism’s constant contradictions.
I’m tired of my own constant contradictions.
I’m tired of second-guessing him.
I’m tired second-guessing myself.
I’m tired of never knowing what to do.
Like this week, when he was invited to a birthday party for a boy named Ben.
I didn’t know what to do because Joe and I were going out of town for the night, and even though we go out together all the time—more than most married people get to go out—we hardly ever get to go away for the night alone and I really wanted to sleep in a hotel and order room service and watch cable television.
(Joe canceled cable last month. He said the kids were watching too much TV. Turns out I miss it more than they do.)
So, I told Jack he couldn’t go to Ben’s because it was a long party with laser tag and swimming and fireworks and cake and I wouldn’t be home to pick him up if he needed me.
I reminded him that we had what’s called a precedence for this sort of thing and it was the one single drop-off birthday party he has gone to in his entire twelve years on this earth and how after an hour he was asking when I was going to pick him up because, in his own words, he didn’t want to talk to people anymore.
He screamed at me that precedence was the stupidest word ever and his older brother Joey was going to a birthday party the same day even though I wasn’t going to be home and I said well, that’s Joey, that’s different and he screamed back I am like for Joey too!
And I called Ben’s mom and she was so sweet and soft-spoken and has a background in special education and promised me she would love to have Jack and she could manage him with no problem, but I still said no.
And I felt like a selfish toad of a mother, because I wanted to go away to a nice hotel and maybe lie by the pool and read magazines and deny my son with autism the chance to go to a birthday party.
He hardly ever gets invited to parties. And by hardly ever, I mean this was his second invitation. Ever.
But I just knew, I knew he wouldn’t be able to handle such a long day and I wouldn’t be around to help him and I didn’t want to cancel my plans but I didn’t want to leave him either.
This is how my autism mother’s brain works, all day, all the time. I want so much to believe in the best, but I have come to expect the worst. Constantly, I taste the bittersweet flavor of hope and guilt, remorse and false bravado.
I am tired of false bravado.
So I told him no. I was very terribly sorry but no, he definitely could not go to Ben’s party. Some other time, maybe. Or we could have Ben over this summer wouldn’t that be fun we could even play laser tag and make cheeseburgers on the grill and get his favorite pickles la la la.
Jack wasn’t buying it. He wasn’t buying the pickles or the cheeseburgers or the precedence or my fake, bright, sparkling voice.
He started whirling and screeching all around me.
I sat down at my desk and I listened to him scream that all he wants is to be like everybody else and it wasn’t fair and pickles are dumb and if I don’t drive him he will walk there all by himself, and I thought to myself, nothing should be this hard.
I’m tired of everything being hard.
And at the exact same second—literally, factually, actually, the exact same second—I thought to myself, everything should be this hard.
The truth is, it’s always going to be this hard. Forever and ever and always. But when it’s hard, I have to listen. I have to listen and talk and write and think and scrutinize.
And then it’s like I have to take an invisible dustpan out and clear away all the debris, all the detritus and garbage and falseness, and I have to concentrate on what I really want.
What do I want?
I want to go away for the night and watch The Real Housewives of New York City on cable television in a quiet hotel room.
I want to nudge autism aside and stop framing everything within it’s distorted, biased lens.
I want my son to feel like everyone else for once.
I want to say yes.
I want to say why, yes, Jack, you can go to Ben’s birthday party. Go and play laser tag and swim in the lake and watch fireworks and eat cake. Go and enjoy a party just like your big brother Joey.
Even though I knew in my heart he could not handle this party, I said yes anyway. I said yes and then I packed my bag and I drove away with Joe to a beautiful hotel with cable television.
I said yes because sometimes, I just have to say to heck with autism and selfishness and worry.
And so I gave the nice mom all my numbers and I drove away and all afternoon I checked my phone for texts. At around 4:30, she sent me a picture.
I looked at the picture and I looked back at the TV and I looked at the picture again. I thought about how handsome he was and the way he was looking right at the camera and look at his smile he almost never smiles that way, only when he’s really happy and calm.
I thought about how he broke the precedence. He defied convention, he exceeded expectation. He lasted through it all–the laser tag and the swimming and the fireworks and the cake.
I thought about how I almost didn’t let him go and I would have robbed him of this chance to be successful and spend time with his friends and look at the camera and run around with laser tag.
I thought about the very last thing he said to me before I put my sunglasses on and we drove down the long driveway.
Mom. For me. I know I can do this.
July 11, 2016 @ 11:33 am
Carrie, my heart breaks for you, even as I know your heart — and my heart — are fuller than any mother deserves. I know the desperation of wanting the cookie-cutter life your son will never have, even as you cherish what makes him so special. I know the utter mental exhaustion that comes from never taking for granted that things will be “no big deal.” Everything is a Big Deal. And I know about the chronic guilt, the chronic stress, the chronic…everything. My therapist asked me recently, “How do you know when you’ve done enough for him?” And of course, there is no answer.
Kudos to you on your recent victory. There will be more!
July 11, 2016 @ 11:40 am
Me too for all of it me too!!!!!!!
July 11, 2016 @ 12:07 pm
Carrie – what a great victory. Kudos to Jack!! (and you – let’s be real here.)
Wish we lived closer and our kids could be friends!
July 11, 2016 @ 12:14 pm
Carrie, have you ever thought about the social services system in your county? You could get respite care and maybe that respite care could be a care giver to be available for something like this birthday party. The person who would be called instead of you to pick Jack up so you could be “normal” and enjoy your time away! It’s not the way most families have to deal with the day-to-day things or the special times, but it has been so helpful to us! I don’t know how I could have survived life with out our county human services.
July 11, 2016 @ 12:20 pm
❤️
July 11, 2016 @ 12:48 pm
Same dilemma for me last week, an end of term school trip rather than a birthday party….a whole day of activities and buses and general chaos, I knew my son probably wouldn’t go the distance. Guaranteed that someone would be ringing me to come and pick him up, on a day I had multiple meetings and important visitors at work. All week I flip flopped over whether to let him go or keep him home for the day rather than have the mental stress.
Eventually he said he didn’t think he wanted to go because it was too hard, and at that moment I knew he had to try. And guess what, he was fine and had a happy day.
It could just as easily gone the other way….. But we take the wins where we can.
July 11, 2016 @ 1:04 pm
Awesome job, Jack. I’m tearing up reading this. And YES, you take those wins because they are so precious. My daughter with Asperger’s graduated from gr 12 two weeks ago. She had been having many meltdowns at school & staff were concerned about this happening at graduation. So she had special seating (to allow her to leave easily if necessary) and even got her diploma first (probably overkill, but intended to free her up for the rest of the ceremony). Everything went PERFECTLY. She did so well. The next evening, she went to prom. Her guest (her BFF from another school) couldn’t attend, but she dressed up and looked stunning in her floor-length gown. She had a great evening of dinner and dancing. The victories are SO worth celebrating and sharing — especially when the road to get to them is so torturous at times. Thanks again for a great post, Carrie.
July 11, 2016 @ 2:13 pm
I feel this way so often. It’s so hard to just let go and see what happens. The worry/concern is always there and I wish it wouldn’t be. I hate that the simplist little things can be such big things.
Thank you for giving me a sense of “normal” and allowing our little-big things to be okay.
July 11, 2016 @ 2:28 pm
this made me cry. I totally thought you weren’t going to send him. Isn’t it so scary doing things like this? It’s so nice to read about another mom who gets it. Next week I’m going to a girls camp for church with my 12 year old on the spectrum. I keep telling people I’m nervous but they don’t understand why. I think you would understand. Thanks for the great post. And good job to Jack.
July 11, 2016 @ 3:29 pm
I LOVE reading your blog each week! I am the grandmother of a 9 year old boy on the spectrum. I know you touch many others too with your honesty told stories of your family.
July 11, 2016 @ 4:36 pm
This picture will have me smiling all day-for Jack and for you, Carrie! ❤️
July 11, 2016 @ 4:40 pm
Of course I cried while reading this, especially seeing Jack’s happy face! I have thrown away party invitations without telling my son. I think I need to take the chance and just try to let him go.
Thanks for sharing struggles of your heart with us!
July 11, 2016 @ 5:21 pm
I feel like I say this about every post, that each one is my favorite and there has not been one that I don’t cry over and 100% relate to…you always nail it. thank you thank you!!!
July 11, 2016 @ 5:53 pm
I don’t know how it is that I don’t know you and yet every time I read one of your posts, I want to respond like you are my close friend. I guess it’s just the way your writing makes me feel like I’m with you, listening to you talk. I love this victory, this photo, the fact that you were able to do what you wanted to do and Jack was able to do what he wanted to do, and that other sweet mom was supportive and understanding. I hope there are lots of more stories like this in your future.
July 11, 2016 @ 9:08 pm
Carrie, I’m so glad I found you. My son is 27. I’m tired too. I want him to enjoy his life. I want to enjoy mine. I have grandchildren now. Nothing is normal. Nothing is easy. I hate Autism. But I love my son. I want a magic wand to wave and make it go away. This side of heaven will never be easy or normal but I know this too shall pass. Best wishes to all of you mom’s.
July 11, 2016 @ 9:25 pm
I had a lump in my throat while reading this. You describe the experience perfectly, and I feel the same way you do. The planning, the strategising, the hopelessness, the hope, the relief, and the surprise you feel when things go well. The lows are low, and the highs high, and there is barely any inbetween.
July 11, 2016 @ 11:29 pm
I have a small feeling that by you saying no, Jack built up the courage to prove you wrong. I bet you have never been so happy t be wrong in your life!! Bravo Jack!
July 12, 2016 @ 10:15 am
You touch my heart every week and renew my faith. You have been given a gift and you share every bit of it with us and for us, God Bless and Bravo Jack!
July 12, 2016 @ 12:54 pm
I’m so proud of and happy for you and Jack! My nine-year-old AU grandson never goes to the pool at the campground because there’s always loud music… so yesterday he broke the mold… he not only went up to the pool but the DJ was having people come up and dance on the side of the pool and he wanted to do it… So we did!a first time for everything!
July 12, 2016 @ 8:01 pm
My son is 43. I’m tired. Period.
I typed this in as a joke to myself – I really had no intention of “sending” it.
Then I thought, “I’M TIRED?? —what about HIM???”
How fearful I am to die and leave him with no one who cares the way a parent, a MOTHER cares!
He’s in a group home and it’s only a little less stress to not be living WITH him, in our home. And he fears us dying too. How tired he is of not being normal …
truth be known? I’d give up “normal” if it meant never knowing him, never loving him. He is so full of loving intent and I choose his inability to share it over false hearted good-willers any moment of any day.
One day he’ll walk into heaven and I’ll see him there as God sees him: light and joyfilled, and still his Mother’s son!
And we won’t be tired any more.
July 13, 2016 @ 9:10 am
I understand that internal struggle so very much! My son wants to be like every one else, and he wants acceptance. Especially from his parents. He wants us to trust his capabilities to do things on his own and be able to navigate the world on his own terms. I should feel proud that he wants independence but I feel fear and worry, instead. I need a weekend away! I would settle for a night away. Heck, I want to be able to go out to dinner with my husband and not worry. To just forget for a while.
July 13, 2016 @ 1:58 pm
I am so glad Jack lasted out the day, major victory. I am an asperger warrior mum of a 21yr old son, I thought, like you, just once, to not worry or have to think about the daily challenges for him and me would be wonderful, he’s struggling so badly at the moment with coming to terms with what I can’t do for him as he is an adult and still wants me to make appointments, attend the doctors etc. He has had one job from leaving school, he lost that, because he couldn’t cope with the expectations of him on a daily basis, so he has withdrawn from the world. I find it so sadthat he can’t find his niche in life and still depends on us, may be more so now, the outside world scares the life out of him
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August 10, 2016 @ 7:22 am
I have read your blog for a year or 2 now. I can’t even remember where I first came upon it. I have always had an interest in special needs, in autism especially. Thought I would be a special needs teacher, and honestly I thought I would have children with special needs. I do have a teaching degree, but instead of officially teaching, I’m a mum and a foster mum and still this interest is strong in me. Perhaps fostering is where special needs will enter, I don’t know. But anyway, I have been drawn in by what I learn on your blog. Seriously, who can pass by your blog and not be drawn in? You describe yourself, Jack, your family, with the kind of honesty I am privileged but entirely overwhelmed just to read. Thank you. For the window into autism, for the vulnerability, for digging into this life of autism you can never really escape. Except to enjoy a beautiful night away at a hotel. While Jack went to a birthday party. I nearly cheered for you, for him, for Ben who invited him, for the mum who was willing, for the friends who accepted Jack for Jack. And for Jack, because he wanted it so much and he did it. I don’t even know you but I feel like cheering for yours and his success, like witnessing a win after years diligently training in a sport. What a win.