I took a deep breath. Pulled out my phone and typed the following text:
Please tell Bobby I’m sorry. Things have been stressful, and I took it out on him.
I put my phone down and sat, thinking of the previous 24 hours which could be summed up in one word:
Meltdowns
Declan had a meltdown having to get in the car for a sporting event. He had a meltdown getting out of the car at the sporting event as nerf guns were not allowed to come. There was a meltdown about a device. There was a meltdown about taking his sleeping gummies. There was a meltdown about having to go for a haircut. There was a meltdown about getting dressed.
The screaming, the hitting, the running away.
Must stay calm. Must give appropriate space. Must keep Declan safe.
When Declan was calmly situated in the car away from the rest of us, dressed and ready for his haircut, Bobby, my husband and I finally erupted. And had a meltdown of our own, yelling at each other.
The stress of Declan’s meltdowns makes me want to cry at times. They’re hard. They’re relentless. They hurt.
They’re LOUD.
But when I was finally able to emote, when we all were, we chose anger instead of sadness. And took it out on each other.
Earlier in the week at I ran into someone who used to ride my school bus.
While we were waiting for our event to begin, we started catching up, talking about our families, our kids and the sports they play.
When I got to Declan, I told her my youngest was autistic and played High-5 soccer and went to an autistic boot camp. To which she replied,
“I have some kids in my classroom who are autistic, and their parents always make it seem like their kids have a list of things they can’t do. They don’t give them the chance. I can see the kids can do so much more than their parents give them credit for.”
I began to tell her why the programs were a better fit for Declan, who would have a hard time playing in our town’s recreational soccer league, but I realized she wasn’t listening. She was looking around the room as my words fell on deaf ears.
I stopped talking and just smiled. A minute went by and she excused herself.
I thought about this conversation after the boys had left for their haircuts and I had a moment of peace.
I realized what she had said had nothing to do with High-5 soccer or Declan’s autistic boot camp.
I realized she had already made her judgement of parents of autistic children and their capabilities.
I felt frustrated. Because she had no idea.
Whatever she sees from children in her classroom will never be the whole picture. I can say that with full confidence.
Because I know Declan’s teacher will never see the number of meltdowns, or how extreme they are. Neither will any of his therapists nor supports. Neither will any of our friends or acquaintances.
When I am looking at something and wondering if it is something Declan may want to do, I am not looking at school day Declan. I am looking at ALL of Declan.
The parts of Declan that only his family see.
There is a cloud over Declan right now, and we are helping him through. It’s a part of our daily lives. I would have never written about his cloud – until someone sparked a negative emotion in me, with a judgmental comment.
So I write, to set my frustration free.
Robyn, I don’t think I have ever told you how much I admire you. Your posts are a must read for me. Both my kids are not autistic but I am learning so much from you as a mother. Thank you so much for sharing.
That is so kind! Thank you so much!
You are so welcome.
Hello! My 12 year old has autism. And usually I have it under control and we had I moved him to a different school from a different town. I knew it was going to be a big transition and oddly enough he showed the signs they took him to school. Now I warned them as soon as I walked in there. I let him sit in on the meetings as he had to renew his IEP. They kept asking me what I thought and I was like to be honest with you everything that he needs to be in a special class. Well they didn’t want to listen to me even though they thought that mainstream classes would be okay for him. I think he had a couple meltdowns but was fast recuperation. Well ended up harming another child by throwing a chair in technology so then they decided that he was going into structured learning. My son has never been so happy in school this is his first time in structured learning. Know there’s some things that we cannot expect our kids to do or say that they’re capable of doing. I mean he’s pretty self-sufficient in some areas. But I guess it just depends on the environment and what he plans to do. He does his chores and he does things that normal kids do. But that’s the thing there’s certain things he just cannot do.. and they see him doing all these other things thinking that there’s nothing wrong he could easily get to your class like this… How wrong.. he also very emotional and cannot do Sports. So I don’t make him. Some people are so stubborn they don’t see this.
I’m so happy your son is happier now in his structured learning class. I agree it is hard when others don’t listen. I am glad your son has the support he needs now!
Big, big hugs!!! Ms. Judgey McJudgeypants can take a flying leap! I hope the storm passes soon. 🙏🍀💕💌
Yeah, I did – I let her get to me. We are all holding back our autistic kids and she knows better. Whatevs. Thank you! I don’t know what is in the air, but I am hoping it blows away soon! 🙂
It’s the random ones that catch us off guard that seem to be the longest and hardest. It’s REALLY hard to remember they can’t help it and they’re not being little turds on purpose. So hard.
You’re right. I don’t think she was trying to hurt me. She just voiced the formulation she had created. It’s tough!
I meant the random meltdowns, the ones that happen over stuff that’s usually okay. Instead of the ones we figure might happen because of situations, crowds, too much sensory input, hearing the word “No”…
but yeah, having someone say they’re familiar with autism then slam you is just as bad, worse actually cuz nobody likes feeling like their parenting is being questioned. Especially when things are already tense and you’re blaming/questioning yourself, like we always do. Ugh!
I wished we lived closer so we could rant and cry together. Big virtual hugs!💌
Oohh! Right! Yes! I agree – these meltdowns – where are they coming from?!?! We are losing our minds here! I am afraid to say anything as I may start another one!
I wish the same. It would be so great to be so close to support each other!!! BIG virtual hugs!
The effects of autism get to everyone now and then, Robyn, and I truly admire you for writing about the bad as well as the good. Often other people can make things so much worse than they need to be because of their blatant lack of understanding or even vague comprehension of what it is to live with someone with autism. Sadly, your experience is all too common and people can be a nightmare. It drives me round the twist, and I have to say it’s actually made me intolerant towards other people. I’m glad you find writing a good outlet for your frustrations and concerns, and I also know your writing benefits everyone who reads you posts at the same time. So I’m with you, and I feel for you. Keep strong, my friend, and ignore the ignorant. 🙂
Thank you so much, Alli! I really appreciate your kind words and understanding – so much!! 🙂
Many folks will not understand the constant nature of the pressure on you guys. You are only human, you can only bottle it up so much. It has to be released in someways. My partner and I would explode at each other, just the strain. Things changed so I started going outside and hitting a wall. Now the wheelbarrow gets pushed round the garden. I so understand your frustrations, it never lets up for you. I’m lucky I don’t get anything like the meltdowns you guys have to cope with. Ours are emotional and verbal ones. You are doing an unbelievable job. Sending you hugs. xx
You are so right – the emotion bottles and then explodes. It’s tough! Thank you so much! I think you are doing an UNBELIEVABLE job yourself. Thank you for the hugs! Sending them back to you as well xx
It’s so important that you keep telling your story, whether it comes from love, fear, or even frustration. That’s how the rest of the world becomes more aware, not just of what autism means to Declan and Caitlyn, but how it affects your whole family. The end of the school year can be upsetting to many children as it brings change in routine and new expectations. Maybe this is what is going on with Declan and it will pass soon.
That means so much to me, thank you so much. I started this blog to tell our story – that was it. I don’t know about autism in others as everyone is so different. I can only speak from this perspective – as a parent in this family. I think you are right. The end of the year, we have the air on – but maybe he’s affected by the heat? Hopefully we will settle into summer with some mellowness.
I’m not quite sure what’s going on with my daughter yet (newly 5 and is being tested for autism), but I feel you on the meltdowns. She doesn’t usually have them around the grandparents or people from school, so they don’t seem to believe just how frequent and bad they can be.
Oh wow, yes that is a tough spot to be in. My fingers are crossed for you that she gets the diagnosis she needs to get the support. Once the support is in place people seem to see the need so much better – because you are right – not everyone wants to listen to mom. So tough!
That’s good to know! The school she will attend is already doing an early intervention type thing over the summer since they know that she’s in OT and speech therapy, so that’s good at least!
You do a fantastic job Robyn and I can understand your frustrations. You are although like superwoman also a human being. 🙂 Not that I have any knowledge in bringing up someone as special as your three children I personally think that you are doing great. One day at a time.
Thank you so much, Elaine!
Well said, Robyn!
Thank you so much!
I get what you are saying. Coming from here, where the kids I work with are pre-judged the other way (that they can’t do stuff and the teachers/schools don’t give them a chance), I might do a lot to get this teacher teach some kids who need this attitude.
I think understanding comes in leagues – step one is awareness, step two – after some exposure. You are at step 100 – she can’t even begin to imagine where you are coming from.
Oh wow – that is interesting!
I think you’re right.
It’s just like when you talked about the meltdowns in public. Sometimes you just have to keep with your program and ignore the stares. People just don’t understand.
I agree – they don’t. Tough!
I love when limited adjacent observational opinion equals having had an “experience” with something. Nothing like flippant insensitivity to make you want to advocate and protect your kids even *harder*
Exactly! So frustrating to face such a wall and left feeling helpless. I couldn’t say anything more to her, but could write this piece to advocate this point – and it felt really good to get it out there.
Absolutely! 🤗🤗🤗
Thank you for this, people don’t know what it is like.
I agree – so glad you could connect!
You are special mom and family as you care for one another. May God bless you richly and grant you special times for renewal and strength. You’re doing a wonderful work within your family and in other lives. Keep pressing on. 🙂
Thank you so much! 🙂
I applaud your courage of sharing your story. Many people just can’t muster this courage. Kudos!!!
Thank you so much!!
This post means so much to me. My brother has autism, it’s so difficult for people outside of immediate family to understand what really happens at home. Even close family members don’t tend to truly understand the full extent of how they are sometimes. Thanks for sharing😊❤️
I agree – sometimes if you aren’t in the house 24/7 you just don’t understand the depth or magnitude of each decision, action – everything! I am glad you can relate. Thanks for reading! 🙂
Exactly! Your welcome, thank you for sharing! :))
Thanks for sharing! Very interesting post and comments.
I was reading a recent article and it mention…the challenge begins when parents find out that their child has a mental disability….and then the article went on to provide the greatest source of help especially With problems piling upon problem, many parents
experience despair. Exhaustion often takes a toll. Tears fall, and self pity may sometimes surface. At such times, Parents can call upon God, the Hearer of prayer- Psalm 65:2
Thank you so much!