Recently, Bobby and I volunteered to help renovate an apartment with our church. Once a month our church dedicates a day to this endeavor and between the two older kids, one of them will accompany me on this task.
When lunch time rolls around I realize it is more than a time for eating. It is a time of community and fellowship. I’ve also realized if someone doesn’t know you, they will then sit right next to you to bridge this gap.
Thankfully we have gone frequently enough that we are no longer swarmed when we sit at the lunch table. We are introduced to new people by members we have met before. It was in this scenario I found myself discussing our family to a woman I had just met.
Our conversation traveled in a predictable way. We started talking about our families, where we lived and how long. Where Bobby went to school, if he liked it and future plans. We talked about how long we had been going to our current church. Realizing there was a large discrepancy between the amount of years we had been living in our house and the amount of years we have attended our current church; our conversation took a turn.
I found myself telling the story of our last church, of Declan being autistic and being told he was no longer welcome there. The time we took off from church and how much he does enjoy going to church with us now.
“He has an affinity towards non-fiction,” I explained, “So more than activities or crafts in his Sunday school, he likes to hear the bible stories that involve places and people. He holds that information very well and tells us the details later.”
“Oh! That’s wonderful!” My new friend exclaimed and then added, “He sounds higher functioning then, yes? Is he mainstreamed at school?”
I smiled and nodded, “Yes, he is mainstreamed. He has a 1/1 aid to help him with certain things throughout the day, but he is in the classroom. He is pretty high-functioning.” I thought for a second and continued, “He’s come such a long way.”
I often think about Declan’s two-year-old well visit with his Pediatrician. The visit she thought something was different and recommended I have him evaluated for services. Not for a diagnosis, just services. I HESITATED to make that call to the county. I knew Declan was a handful, but I didn’t think he needed SERVICES.
It was that year that things became successively more and more challenging. Language lost, behavior erratic, sleep gone. This first evaluation put him developmentally delayed by eight months, which blew my mind. He was losing skills he had learned, not gaining anything new.
Early intervention entered the picture and began weekly visits from an OT and a specialized instructor. When Declan was three, he was diagnosed with autism and began his special needs preschool.
I laughed at the class picture that year, when I saw how they helped my Duracell bunny sit with his class for the photo. His OT had to hold on tight.
But what sits with me now is that I HESITATED to make that call. I didn’t see the need others saw. I realize now if I had not made that call, I would have spent the last six years repeating one sentence.
“He should know better.”
I would look at the behavior and shake my head.
The screaming, the hitting, the running.
“He should know better.”
I would have looked at the age, not at the ability.
Not potty training until he was six.
“He should know better.”
Not staying in his bed, up all hours of the night.
“He should know better.”
The list goes on and on and really makes me shudder. All the things I would have disciplined, maybe even punished because I would be operating under a different mindset.
“He should know better.”
Thankfully the Pediatrician picked up on something I didn’t see when Declan was two. Maybe someone else would have picked up on it later, but I didn’t have to worry about that. Thankfully I DID call. At two Declan began Early Intervention services. His journey began.
Early detection, early intervention helped us so much. So much that Declan, my little Duracell Bunny has achieved so much, is HAPPY and I know, is capable of so much more.
*Cover photo is my own – the first time I saw Declan SMILE in forever. He was three, in his new special education preschool and was finally feeling GOOD.
My daughter had to wait until Isobelle was 10 to get the diagnosis, and we know that is because the National Health system didn’t want to pay the school extra. There is 1 t.a. in the class, for Isobelle, and the rest of the class. Just not right.
Oh gosh, that is frustrating. Not right at all. Not helping Isobelle or anyone for that matter.
Now it’s trying to get her into college as she is 16.
None of us are experts in this. Some of us can hardly change a nappy . What chance have we got with some of the stuff we end up dealing with, I’ve been tinkering with a post about the early signs. Just can’t get it right . It’s easy with hindsight. But at the time it was just a fog. My partner saw it first, I didn’t. I kick myself for that. Your a wonderful mum. Even wonderful mums are allowed to hesitate sometimes. x
I didn’t see it at first either. It was until after a year of services and the diagnosis that I finally saw what they were seeing. And it was like seeing everything Declan for the first time in this new light. I am so glad they helped shed a light on what I couldn’t see. I am a total “wait and see” parent. I can’t tell you how many times I just wait things out to see what will happen next – for myself as well. I am so thankful I did call, saw Declan from this new light and saved us both years of heartache and hardship – and found his happiness. I have a post in the workings too – when I first saw Declan in this new light and I was trying to show Bob. When I had the “Ah-ha! I see it!” moment. I’ll have to get it together. Really is amazing to look back and see things in our new understandings! Thank you! x
Our pediatrician told us Ben couldn’t be diagnosed until he was 3 years old🤦♀️SO much lost time… We knew Ben was different at one year, by 18 months we were already thinking autism.
I wonder if earlier intervention would have changed anything?
Its awesome to see the ‘negative behaviors’ decreasing in Declan!
Ben has had an increase lately. They want to try adderall since ritalin didnt work. Poor little guy is already on 3 meds, but if it will help him be still and focus instead of pinballing all over the place, it’s worth trying. No kid wants to feel frustration all the time anymore than we adults do.
💌
I don’t know if Declan could be diagnosed earlier – I know that early intervention talked to me about going for a diagnosis, but I decided to wait until he was three. But the pediatrician did encourage me to call the county for services, which were great. If he didn’t learn anything, he did learn to get used to people working with him which is great.
That stinks Ben is going through a rough patch. That smile of Declan’s made me realize I hadn’t seen it in forever – all I saw was the sad frustrated face. I am sure Ben doesn’t want to feel that way either. Here’s hoping he is smiling and feeling better again soon!
You were very lucky to get a diagnosis at such an early age – it makes all the difference
I agree – I didn’t realize it then but I sure do now
I think y’all are a poster family for how intervention should go. A lot of hard work on EVERY one’s part. From my experience, getting the diagnosis gave every one a chance and a reason to sit back and say “Hmmm.” We’re all doing much better as a result.
Thanks! I am so glad I made the call, but I really hesitated. I thought I was making a big thing about something I was supposed to be able to handle. I ended up trying to be a good patient and really ended up helping Declan and the rest of the family tremendously.
I think we are fortunate to live in a time when these conditions are diagnosed and recognized. Our son has a psycho motor disorder that means his mind works too fast for his hand to write well. But he was diagnosed as a kid and a computer came to the rescue. He has always done exams on computer as well. When he was in London England doing a Masters in Economics he had to be re-assessed. He was worried that he might turn out to be “normal”. But when he went to get the results of his testing he was told :” Dont’ worry you are NOT normal and you will be confirmed as needing to work on a computer.” In days gone by he would just have been labelled ‘lazy’. But he was not. I love Declan smiling. You are doing a great job Robyn.
I agree – I am so thankful that there is more awareness and early detection for different needs. Declan has been so blessed by having his needs discovered so early. That is great about your son too. I am also concerned that someone one day is going to come along and say “Everything’s fine!” Which wouldn’t be true. Thank you, Anne! You are too!
I’m so happy that you took the advice, to at least check for issues, and that it all worked out!! A friend’s family fought doc’s for years in an effort to get their daughter diagnosed. I’m not in touch so I don’t know if they ever got a diagnosis of autism or anything else. you were VERY lucky to have that pediatrician!
I realize that now. At the time I didn’t see what they did and am oh so thankful I followed through. I read now so many blogs of people that struggled to get a diagnosis and support. We are truly blessed everything worked out as it did.