The Truth About Autism
I was in Target the other day and I ran into a mom who has a son the same age as my son, Jack. I think they were in third grade together, and again in fifth.
We stood chatting in the aisle, about the price of baseball cleats and some other things, and just as I turned to leave, she asked me a question.
How is Jack?
I answered her in this stupid, fake, bright-as-a-penny voice.
Jack? Oh, he’s great! He’s doing just great. Thank you for asking!
As I stood in line with my cart and the loaded the bags into the car, I thought about all the things I could have told her. I could have told her the truth, but the thing is, my truths sometimes feel like secrets that I need to hold close to me, and safeguard. My truths are ugly.
Everyone else’s truths look so pretty, so fresh and fun and easy. I know, I know, Facebook posts and conversations in the aisle of a store are not always accurate–not always searingly honest–but I can’t help it. I wonder things.
Does anyone else have great big loud arguments with their husband?
Do you ever look over at your children in the middle of dinner or whatever and think, I have no idea what I am doing with these people but how many times do I have to remind them to use a napkin?
Or listen to your child with autism–the very child from whom you coaxed words like a rare, sparkling gem and celebrated each new sentence–obsess over a something like what time the movie starts or if the wind chill factor is going to drop, and murmur under your breath shut up, please just shut up I can’t listen to this for one more second.
Is it just me?
The truth is, every once in a while, I see her son in the gym when I drop my daughter Rose off for practice. He stands there in a semi-circle with a bunch of other boys, dribbling a basketball.
I don’t think Jack can dribble a basketball.
I don’t feel sad much anymore about Jack’s Autism Spectrum all-in-capital-letters Diagnosis, but it’s hard to watch the normalness of his peers, while he is stuck in the space of Disney moves and hot fudge sundaes. It makes my heart squeeze a little.
Jack doesn’t do a whole lot of normalness.
The truth is, I don’t tell him I love him enough. I don’t tell my son that I love him to the moon and back and I would do anything for him and I think he’s just the bees knees as often as I should.
See, I’m too busy putting a fork in his hand when he’s using his fingers to pick up a meatball and telling him to use his words when he’s screaming in my face and reminding him that we do not swear in the grocery store.
The other day he called me a b&^%#. It was like a slap, or the cold water that splashes in my face when I’m on a waterslide. I was stunned.
But wait! There’s more! I have more secrets to share!
Sometimes, when I am sitting on my couch with my husband, trying to have a conversation after I shuttled everyone to basketball and Girl Scouts and drum lessons and home again, then made dinner and cleaned up and shouted at all five of them to take a bath and go to bed already, and Jack comes down the stairs fifty-million times to ask where I am and lately he only talks in a high-pitched voice and he says Mommeeee where are you as if I’ve run away on some exotic vacation instead of just loading the dishwasher, sometimes, I have bad thoughts.
I can’t do this forever.
I cannot do this for the rest of my life.
Children are meant to grow up, and move out, and live on their own. But this may not happen for me or for him and this was not how I pictured my life and it makes me feel scared and frustrated.
I love him.
I’m tired.
He screams all the time now. Not like three-year-old-tantrum kind of scream, but loud, frustrated shrieks whenever we ask him to do anything. He is angry, and hostile.
Jack, can you put away your back–
What is your PROBLEM.
Hey, buddy, you can’t talk to me–
YOU DON’T GET ME AT ALL.
And then we take things away and we tell him his behavior needs to stop and his cycle of rage begins to spiral and before we know it, he is slamming things and screeching swear words and generally out of control.
The other day, he pushed me down a couple of stairs. It was not really hard and no one was hurt, it was eye-opening. This isn’t getting any easier.
I know that if I have a boy who pushes—a gentle giant of a son who bakes cakes and listens to music and curls up to sleep with six pillows every night —then maybe someone else has a son or a daughter who pushes.
If that is you, well, you are not alone. I am right here in the trenches with you. My 12-year old pushed me while all four of my other kids watched and they were nervous and I didn’t know what to do but I was angry, and sad.
Every single day I am scared he is slipping away from me, even when he’s closer than ever.
Mommmeeeeee. Where are you where are you are you here where are you.
What if we lived in a world without subtext—a culture without mystery—and we could just tell the truth?
If someone asked me, “How is Jack?” I could just answer honestly, and simply.
This is harder than I expected.
The truth is, like love, progress moves softly. It doesn’t announce itself in broad daylight or ride in like a white knight on a fast horse. It is a whisper rather than a shout.
It is a small glimmer of light at the end of my endless tunnel.
I love him.
The green pen is his favorite.
February 20, 2017 @ 9:05 am
Carrie, you are not alone. I have been doing this for 37 years now. Just this morning I asked John to use a larger bowl for his cereal because he had filled it to the top and the milk would overflow. He answered, “Yes, Your Majesty”. Sarcasm is an everyday occurrence this days. It gets old and so am I! I try to look on the bright side but there are many times I cannot get past the “I don’t want to do this anymore” ugly truth. I understand he is trying to be his own person but he doesn’t realize how many times he puts himself in jeopardy. The fact is he needs someone to walk him through this life. And I will continue to do that, even when I don’t want to. Hang in there
February 26, 2017 @ 2:03 pm
I got, “Yes, my liege,” the other day.
February 20, 2017 @ 9:39 am
I could have written so much of this, Carrie.
You are not alone.
February 20, 2017 @ 9:56 am
As I watched a 12 year old neighbour ride down the street today on his snowmobile, to join the rest of the neighbourhood kids on their PD day from school, and my son was home playing contentedly in solitude on the floor with his PlayMobils, it hit me again just how different he is from other boys his age. I don’t mourn the differences like I used to; he is “our normal” and we know nothing else. But sometimes it just smacks you in the face that there’s another whole world out there that the “typical” kids are living, and you feel sad for a little moment.
I too, have felt sad when someone asks how you’re doing, and you give back the quick “great”. It does sometimes feel like a dirty little secret that there are screaming matches and physical matches from time to time. You are all the time trying to teach, and calm, and put forth a front of normalcy. Thanks for your writing. It’s nice to know there are others.
You wrote my life in this one….
February 20, 2017 @ 9:57 am
Thanks again for your post, Carrie. Yes, it is so difficult. You put words to our struggle, and our love, over and over again. It means a lot.
February 20, 2017 @ 10:26 am
Carrie, my child did same thing to me when he was 9. He was angry at all times to the point I feel like I could not recognized the son I gave birth to. He was not officially diagnosed until 17. He still gets upset, angry, now cussing. Like you his first cussing just cut my heart in half and that is when we start having a fight, sometimes I get so angry I pushed him back, I hit him back, I yelled and screamed at him so much. However, like you I love him more than anything, I do want him to fly away and spread his wings.
Just reading your articles give me comfort, knowing that I am not the only one with all these mixed feelings, emotions. The good news is that I learned if I just walk away and not yell or scream after talking failed then he will cool off very fast. And it can reduce my stress level. We created a sign so we will out back off.
Thank you for being so honest and sharing with these with all of us
February 20, 2017 @ 10:52 am
Your post hit me hard. It’s not during the huge public meltdowns where I feel the real struggle of being a mom of a kid on the autism spectrum, it’s in the daily routine. Sometimes I notice the other moms at school drop off, smiling and waving good bye to their kids as they jump out of the car, and I crave to be them. They’re relaxed and seem oblivious to the idea that drop off could be any other way.
February 20, 2017 @ 12:07 pm
Thank you for your truth!
My son does the same things. High pitched voice, irratable and angry all the time. Pushing me and yelling at me. Taking an hour for me to coax him to bed while the other children are asking me to please make him stop because he’s hurting their ears and they can’t sleep.
I say the same under my breathe but several times I have just lost it and yelled, ” Shut up, please just shut up!” The shock on the faces of his siblings immediately shamed me and I have this guilt I can’t wipe away.
Driving passed the school I see the parking lot loaded with cars and the sign announcing parent teacher conferences and I cry. Not my boy. He can’t go to school because of his behaviors. We’re still trying to develop an IEP and placement but it’s taking forever.
He’s 9 and I pray incessantly. Please God, help us get through this. Help me be a good mom. It’s painful and I also wonder what the future holds. How long can Endure?
March 5, 2017 @ 2:40 am
Christina, I believe we all have those moments of sadness for our children, worrysome for their future, restless nights worrying about things that are beyond our control. We are also human who needs rest and peace once in a while. I used feel guilty for such things but after reading blogs for autism I am not a bad mom after all, we are all extra ordinary moms and angels with wings,
February 20, 2017 @ 9:48 pm
You are not alone. Sometimes just knowing that helps a bit.
February 22, 2017 @ 4:39 am
Christina, do not feel guilty, you are doing the very best you can, you’re a mum, its hard! Xxxxx
February 22, 2017 @ 12:34 pm
Thanks!❤
February 20, 2017 @ 10:28 pm
It hurts most when I see the little ones. I volunteer at church in the 2-4 year old nursery, and seeing them do things my daughter still has not come close to doing, and she will be 32 next month. So far she has not used her superior strength against me, but I suspect it is coming. Then I’m afraid placement will be necessary.
February 20, 2017 @ 11:45 pm
Am in a very similar situation. My 16yr old son is very low functioning w/ lots of aggression (still trying to get the right combo of meds). Lately I have begun to be fearful of him.
March 5, 2017 @ 2:46 am
Oh my goodness, I thought I was the only one who is fearful of their own child. I felt the same way when he was 16-18 years old. He would push me, twist my wrist. He has been going to therapy. What has been working with my son is that if I can stay calm ( God, give me patience,) and then he will calm down much faster. He gets aggressive with me if I yell or scream. He says he feels fear so trying defend himself by being aggressive.
Jennifer, you are not alone, hang in there.
February 21, 2017 @ 8:13 am
Thank you so much for your blog. It is the most outstanding, honest thing I read all week.
February 21, 2017 @ 9:20 am
I still don’t know where we are…but ASD explains everything and it is in this community where I finally feel a fit. At 32 lbs, my son lifted and tossed my compact 115 lb self over his supine body during a nocturnal melt. At 34 lbs, he leg-pressed my 170 lb husband off the floor. The strength is unvelievable. All of his stims make repetetive noise or risk injury and sometimes I can’t take another second of the sound or the reddening skin or of tryingbto redirect to something similar and I scream, scream, scream…and then hate mtpyself a little more.
February 21, 2017 @ 11:53 am
I don’t know if this will help but remember that at his age he is starting to deal with hormones. Obviously that will get worse before it gets better but some of the violent/angry aspects may subside as he gets older. My neurotypical sons were angry and hard to handle as teenagers but when they reached 18 or so they calmed down. My kid on the spectrum is almost 16 and he’s not violent but he is definitely pushing back in his own way right now.
February 21, 2017 @ 2:59 pm
This made me cry. Because I know just how you feel, because even though it’s the crappiest situation it makes me feel good to know that I’m not alone. Having a child who’s only emotions are anger and sadness with understated joy such a rare emotion, I feel the need to celebrate any time it happens.
February 21, 2017 @ 3:47 pm
You are doing a good job, Mom. Do you have a group of other mom’s with whom you can talk face to face? If not, and you would like one, contact me. That has been my greatest help. Other parents making me feel normal. Did I mention you are doing a good job??
February 21, 2017 @ 9:11 pm
Oh Carry I’m almost scared to read your weekly post, because I end up crying all the time. My Alex, who is 10, does this to me all the time. And I have the same feelings and questions you have. You are definitely not alone and I want to thank you for making me feel not alone. I wish with all my heart that both my Alex and your Jack will be able to life free and independent and that when we are no longer here they will have good lives.
February 22, 2017 @ 11:45 am
Carrie, you managed once again to put into words what is in my head and heart. Thank you. We are living parallel lives. Recently, when asked how I am by those that I know truly care and can handle the truth I reply, “I’m tired” or “I’m scared” and then the tear well up…. My 11 year old Charlotte is also doing the blood-curdling screech and it sucks the life out of me. But, we carry on because we have to. It’s back to school day today after the break and the sound of silence in the house is wonderful. I wish for your peace and endurance. Thank you for your honesty and sharing what is in your beautiful heart.
February 23, 2017 @ 12:03 am
I hear you. My son, Travis, seems to be angry all of the time. He’s never gotten physical, but he often answers “you just don’t understand me!” And I’m trying so hard to. Because he reacts in an angry way, he has no friends. And I don’t see that ever changing. I wish I knew how to guide him/help him find his way to an adult future, but I really have no idea what that looks like.
February 25, 2017 @ 12:03 am
Thank you for sharing you’re truth, we really aren’t alone. My 15 year old gentle-6’3″-giant that has always been so sweet and gentle with me, has taken to hitting me. He hurts himself much worse sometimes. And it’s so heart-breaking. I feel betrayed, yet I know it’s really a self-control mechanism he simply doesn’t have when he gets so very angry. Now, in his broken spoken KD-ese language, he is conveying the message that he is a female on the inside and wants to be one on the outside too. I really started to think in prepubesence that this was getting easier. It’s no the problems are just changing and I’ve become more flexible. My daughter, Joi, 14, also ASD has taken to cursing and wishing me dead over tiny stuff. And it’s…. I will be here and love them and help them as long as this body allows, but I can’t say 100% that it won’t be a relief when I leave this body someday. The burden is just SO heavy sometimes. And seeing their cousins around their age running around and doing typical stuff and never inviting them to join, is like a dagger to my heart sometimes. Sometimes it’s a “Thank God we won’t have to deal with ‘that'” moment, but more often than not, it can be painful. We just gotta stick together. I don’t know any other way.
March 14, 2017 @ 4:21 pm
This is so well written, honest… and yes, yes the people whose lives appear ‘perfect’ have all sorts of issues. Not mine necessarily, not yours, but theirs. It isn’t, necessarily, that they are hiding their tough stuff when they post on Facebook, or see you at Target. It’s pretty normal to want to share the good stuff generally, and seek support for the tough stuff from the people who get us, and who we trust. I love that you are so brave, and that you shared this post. Well done. Truly, beautifully done.
January 18, 2021 @ 8:56 pm
My heart goes out to all of you moms with a child or adult with autism. I have a nephew with minor autism. Just as you all said they can’t seem to understand their behavior and wrong moves can hurt them. But I realize the Lord doesn’t give us anything that He hasn’t equipped us for. He has trusted these afflicted children in your hands, because He has put something in you your child needs and he has put something in the child you need, even though it seem unfair. The child is expressing their frustration, because they know something isn’t quite right. You can’t understand your child without the help of Jesus Spirit. The Lord created these children, but he didn’t cause the damage, but scientist, drugs that affect the DNA are the ugly truth. The Lord Jesus knows the most important thing they need is Love, Acceptance in their brain malfunction. I read music is very therapeutic and led art drawing, sensory toys, blankets, clothing. The prayer of faith and speaking the healing of their brain cells in Jesus name is very helpful for you and the child. Jesus did many of miracles in the lives of many, simply because they had faith. He still is here in Spirit and he still does miracles, believe and trust Him. I’m thankful for all you moms that haven’t given up on your child and so is the good Lord, who never gave up on us in our worse condition.