I realize it isn’t PC to admit that parenting a child with Autism and ADHD sucks. But it really does sometimes.
Please understand, I love my child more than my life. But it is impossible to explain to people how hard it is day-to-day.
Someone once told me that having autism is like being an alien in our world. Our customs and ways of relating to each other are foreign and confusing to those with autism.
A good example of this happened the other day.
We were sitting in line at school drop-off, and I asked E what his “special” was that day.
Me: “yesterday was library, so what do you have on day 2?”
E: “Today is actually day 3.” (I didn’t correct him.)
E starting listing the possibilities: “Library, health…oh discovery and design.” Since he stopped talking I assumed discovery and design was the answer to my question.
Me: “So what is discovery and design?”
“AARRGHH!” He slapped his head and growled at me. “Mom, that is so annoying!”
Me: “What’s so annoying?”
E: “When I say something and you think I mean one thing, but I mean something else!”
Me: “Ummm sorry I’m confused. Why are you angry with me?”
E: “Because you always say the WRONG THING!”
There is no normalizing life with autism, every day is a minefield.
6 Reasons Why Autism Parenting Sucks
Every day conversations are surprisingly difficult
When your child cannot control the tone of his voice, or understand why you say what you do, you constantly feel as if you are being yelled at.
Sometimes you are being yelled at, and you have no idea why. And then your voice goes up because…that is how humans respond.
Irritability is a symptom for some children with autism. (And ADHD)
My son can be very joyful, but there is always an edge to his personality.
Conversations have to be thought-out in advance so as to avoid meltdowns and screaming matches. Regardless, we still have at least one meltdown per day.
The general public still doesn’t understand autism
Since starting first grade, I have had approximately 7 conversations with the elementary school principal.
Most of the incidents involve rough play on the playground and my son’s inability to keep his hands to himself. (Do 7 year-olds keep hands to themselves?)
For a while, he was kept in the office, but when I found out and complained they started providing alternative activities for him, so that the other children were “safe.”
Because my 7 year-old is unsafe. Even when he is having fun.
Imagine how that feels for him. To be punished for tagging your friend too hard, or knocking someone over. It takes every bit of “fun” out of recess.
This child loves school. But even his joy is “too much.”
We have no emotional regulation
When my son was born he screamed almost all the time.
E never self-soothed very well and this trend is continuing into our seventh year.
At school, the teacher writes comments like, “calling out, not in control of self.” “Easily frustrated, poked his work partner.”
Last week as I pulled up the driveway for pick-up, I could see the dark look on his face. When he got in the car he burst into tears, telling me, “my poster got torn.”
His “all about me” poster got a small tear in the corner, and he had worked very hard on it.
His teacher didn’t know why he was upset, just that he, “stomped around” during clean up, and was “very negative.”
To a child with poor emotional regulation, a torn project is a huge deal.
Even bigger – nobody even asked why he was upset.
Yes he stomped, but he held the tears in until he got to the car which is a huge accomplishment. I told him I was proud of him that day.
People feel sorry for me
Well-meaning people tell me, “I don’t know how you do it.”
Ummm if it were your kid, what would you do?
Don’t feel sorry for me. Just try to understand.
From the outside my son comes off as reactive, loud, aggressive, and at times weird.
He is weird, he has autism! It’s ok, we laugh about it sometimes.
But feeling sorry for me doesn’t help. Complimenting me on my, “patience” doesn’t help either. I’m not actually very patient.
I am doing what I have to do. If you want to help me, accept my child as he is.
Tell me what my son is doing right. And please, include us in birthday parties.
Constantly under a microscope
When I got my son’s dual diagnosis of ADHD and Autism I asked the doctor, “how much do I tell the school? How much do I tell the world?”
Truth: A label is a label. It won’t go away and people do look at him differently.
The moment I told the school and gave them a copy of the report, I started the ball rolling.
He is watched very closely. Every time he gets frustrated it is documented. When he slaps his neighbor with a paper, it is documented.
If another child makes fun of him, his reaction is watched and documented.
My child is under a microscope. And I hate it.
There are children in my son’s class who I can tell will be “identified” later.
Wrestling, hitting each other, and name-calling happen every single day in first grade. But when my child does any of the above, it is documented as part of his behavioral improvement program.
It is nobody’s fault that this is happening. It’s human nature to observe E more closely because he earned his label earlier. But I still don’t like living under the microscope.
I question myself every single day
When your child has autism and you do not, you need some outside help.
I can’t just buy a bunch of parenting books and be done with it.
Living with a seven-year-old who constantly uses an angry tone is very frustrating. I have had to train myself not to shout back at him.
Sometimes you can’t win, and with autism, you feel like you are losing at least 50% of the time.
I admire all the moms that have blogs about special needs parenting. And I really admire the moms who can homeschool.
But these are not viable options for me.
What does help is parent training and support. I recently signed up for Sanity School from ImpactADHD. This is an affiliate link, see my full disclosure here.
My husband and I will go through the course together.
It’s difficult to say what the future holds for my son.
Some days I feel like all of this therapy and social skills and parent training will totally pay off and he will be tremendously successful.
Other days I catastrophize that he will end up in an alternative school. (Or home with me cyber schooling.)
Sometimes my husband tries to normalize what is going on saying, “well I’m sure other kids do the same thing.”
Nope. Other kids wrestle and argue, but most other children do not verbally threaten teachers or poke their classmates in the neck with a pencil.
There is no normalizing life with autism, every day is a minefield.
Like Dory says, “Just keep swimming.”
Here is another great article written by a parent.
Comments from fellow autism parents are always welcome!
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4 comments on “6 Reasons Why Autism Parenting Sucks”
I have a 12 yr old with high functioning autism and I can tell you sweetie , it does get better. And when it finally “clicks” for your son, the change is HUGE. Probably be around age 10 or 11. And take great comfort in knowing that his autism has made you a stronger mother. Stronger than those of “normal” kids. Have faith, and feel free to contact me any time, my name is Diane.
Thank you for commenting Diane! I appreciate it more than you know.
You are right this has made me stronger. And thank you for saying it gets better!
You have a 12 yr old…I would love to chat some time!
HI, you are right that sometimes parenting a child with ASD does suck, but it does get better. I have 3 kids, 1 with ASD and 1 with ADHD and ASD. I also have ASD and ADHD and yes it life is hard and sucks big time some days (especially holidays), but we can laugh at things that happen in life that no one else sees. I still loose my car keys, phone, forget to take my medication etc but i can’t imagine how boring life without our superpowers would be. Hang in there and keep loving, supporting and being E’s biggest advocate in life.
Tracey, thank you so much for commenting! I am always thrilled to hear from another mom dealing with similar issues.Laughter is what keeps me going. And meeting other women, like you! What are your superpowers? 🙂