I walked into the pediatrician’s waiting room and grimaced.
“Oh great,” I thought, “CHAIRS.”
In his stroller, Declan arched his back and made a sound. He saw the chairs too.
I sent the older two children, aged 6 and 4, over to the waiting area and checked us in with the front desk. Declan began to throw himself forward and backward, screaming in the process. One mighty toss of his body, and he knocked his stroller over.
I took a clipboard of paperwork from the front desk staff, righted Declan and the stroller, and strolled to the corner of the waiting room where no other people were sitting. I unbuckled Declan from the stroller and allowed him to climb on a couple of chairs (and not on people he didn’t notice), all the while shaking his head violently back and forth.
We didn’t have chairs in our house. I took them all out to the garage. Declan used them to climb on things. The kitchen table, countertops, stove. On top of the washing machine (and even into it). Once, he even made it to the top of the refrigerator. When it came to dinner time, the big kids and I ate standing up while Declan, as a grazer, ran through the house jumping on things.
It was ridiculous, but it was just safer.
“No big deal,” I told the kids while we ate.
Upstairs, all the dresser drawers were removed from the dressers and stacked in the corner. Declan had figured out how to open them and climb to sit on top. After a couple of accidents and injuries, we stacked the drawers to the side of the dresser and put the clothes we wore the most in the top stacked drawer for easy access.
It was ridiculous, but it was just safer.
“No big deal,” I told them as we dressed.
We emptied Declan’s bedroom of everything except a mattress and locked him in at night for bedtime. He would wake in the early hours and climb, break, or eat items that could hurt him.
It was ridiculous, but it was just safer (and doctor-approved).
“No big deal,” I told them as we slept.
Leaving the house at any time was overwhelming. There was screaming and crying, hitting and biting. Behaviors I did not understand.
“No big deal,” I told Bob. “You go to the event with the big kids, and I’ll stay home with Declan.”
It was just safer.
I looked at the paperwork I held in the waiting room. Most of the forms just required a signature and were easy to complete. All except for one. The M-CHAT (Modified Checklist for Autism in Toddlers is a screening tool for toddlers between 16 and 30 months of age designed to identify children who may benefit from an autism evaluation).
I live with a “No big deal” mentality. With everything. My only goal at those doctor appointments was to get the heck out of there as fast as I could. It was hard managing my three outside of our house.
I never saw anything as a problem, even if I was utterly stressed out. Well, if I saw a problem, I saw something I needed to fix. It was MY responsibility. Things were hard, but there were workarounds. So, I filled out the M-CHAT, over and over again, the same way.
“No big deal,” I told the doctors. Things may be extreme, but I am keeping him safe.
It’s Autism Awareness month, and as I look back, I shudder to think how close I was to missing or delaying Declan receiving an autism diagnosis. For our family starting our autism journey.
The M-CHAT failed me. Or, really, I guess I failed it.
When I read the questions now, there were so many red flags for Declan. Things that I didn’t see or register as a big concern. Milestone’s, I assumed he was meeting as my focus was drawn to my older children who were facing developmental and behavioral problems of their own.
Thankfully, someone did notice. There was a name to help explain Declan, his needs, and his behavior. Declan was diagnosed with Autism, and he and the family were supported.
Today, we have a happy, chatty little guy that loves to jump on his trampoline and listen to music. A creative child who likes to do projects or laugh at a funny video on YouTube. We all roll with the change of infatuations – from fidgets to video games to horror characters. And accept a limited diet, eating together while sitting at the table.
Don’t get me wrong; we still have a ton of workarounds and our share of frustrating moments.
But they are “No big deal.” We can make things work!
Lovely post Robyn! I remember those days! My middle child is 10 now but is still very much unaware of safety and very much on the go. Is Declan okay now safety wise? We are moving and all three kiddos will have their own room. I am nervous to see how having his own room will be. We still have the baby lock at night. He still hasn’t figured it out. But not sure at the new house. How do you go about it? Doctors just recommend an alarm but I want to prevent bolting instead of already escaping outside. My son is very strong and fast!
Declan is much better safety wise. He also used to be an eloper as well and we had alarms on all the doors. A friend of mine has lock latches placed high on her doors so that her daughter cannot reach them to still get out. Declan doesn’t dart anymore, he just aimlessly wanders. Even though we tell him to stay in our yard, he sometimes will just walk off. We had the AngelSense tracker which helped a lot, but I had that more for when we were out in large spaces as he would wander there as well. When the quarantine hit, I no longer kept the membership because of cost. I still have the tracker and could start again, but I went with a “we’ll see” since we still aren’t getting out much. Good luck to you on your move!
Thanks Robyn for the tips. I appreciate it! And thank you on the move! I hope it’s a smooth transition for my son!
Your blog has been my primary autism awareness tool and probably the motivating factor for getting our own autism diagnosis. Your blog has been invaluable. Roll with the changes.
Thank you, Jeff!
Oh boy… that brings back memories. How did we survive those times, when it was constant instead of occasional?
We got horrible information from Ben’s pediatrician at the time. She told us he couldn’t receive an official diagnosis until he was 3 years old. We missed out on YEARS of support. We knew when he was an infant that something was off. By 18 months we’d already diagnosed him as autistic ourselves.
NBD… duct tape on diapers to keep them on.
Blanket Sleepers with the feet cut off and worn backwards to keep him dressed.
Zero knives or breakable dishes allowed in the house.
😆 would we have believed it gets better back then?
Thanks for reminding me of how things were, and how things change.
I miss SpiderDeclan though😘
Oh my gosh, yes! I forgot about the pj’s on backwards with the feet cut off. We totally did that too! There was a time I tried to just duct tape the zipper in the front – but nah. He Houdini’ed himself out of that one in no time. No knives, no breakables. Visiting somewhere? Running around their house moving their glass drinks out of sight. Catelyn was my “duct tape the diaper to her” girl. Gosh, I have so many pictures of her butt as she is running away in diaper freedom. 🙂
I miss SpiderDeclan too! We still have ALL his costumes through the years and little tidbits of nostalgia. I don’t think I can ever get rid of those. 5 years of Spidey. I thought it was going to last forever. Such a fun memory!
You are so strong Robyn. Hats off to you and your efforts. One of my relatives son has been diagnosed with Autism and the mother is having tough tins understanding the child.
It took me a bit to understand Declan. At first the services helped me as much as they helped him. We found a new groove that worked for both of us. I hope the same holds true for your relative and their son, too!
I hope so too. First they need to accept the child the way he is. That’s important.
I’m not a parent, but working in daycare, I do find that it is often hard for parents to realize, or admit, that something is different about their child that needs to be evaluated. They want to think that it will be okay, it’s just a phase, “it’s okay,” when it really isn’t. They forget that knowing is power. If they are evaluated, and it really is a phase. Great! But, if not, help is available early and that usually makes the biggest impact.
I agree. All of my kids have needed services and they came to them in three different ways for different needs. One of our pediatricians had labeled me a “wait and see” parent. That was a true statement. But I am glad I got the kids the help they needed although I may have been able to help each sooner.
It sounds like you are a great parent and so glad that you got all of your kids the help they, and you, needed.
Thank you!
We didn’t get access to a paediatrician until he was nearly 6. That puts a lot of pressure on untrained parents to correctly diagnose and respond.
That is a lot of pressure. I wonder what would have happened in our situation if we hadn’t had early intervention. A lot of me trying to discipline I bet. A lot of frustration on both our ends.
This is such a lovely and tender post. Declan has come such a long way thanks to your support and I’m glad to hear that some of the things that worried you and you had to deal with are “no big deal” now. Thanks for continuing to spread awareness. I’ve learned a lot about autism thanks to your blog. 😊💕
Thank you, Ab!
On Len’s funeral page we have Hospice for the states, as I would never have gotten through that last day without them. We have autism for England as my youngest daughter is on the Spectrum, and when I phoned she would come on to say, and both of us got to tell her how much we loved her.
That is very nice. Thinking of you, Susie!
It’s never easy to admit things to yourself that you don’t want to be true; but, you seem to have grabbed the bull by the horns just fine, Robyn…
Thank you!
Thanks for sharing your story. It is so hard for many parents to accept that something is different with their child and really challenging to take it all on yourself.
Thanks, Debbie!