I saw Declan suddenly drawn to the bright flashing lights and music on the television.
I scooted in behind him and placed his brand-new SpongeBob backpack across the front of his body.
I crept to the corner of the room and perched awkwardly on the stool.
I prepared my camera and looked to staring Declan.
“MEEEEEEEEEEEEE-OWWWWWWWWWW,” I shrieked in the most heinous voice I could muster.
Declan looked to me and smiled.
Click!
![1977282_926319840728568_88001131831160246312_n[1].jpg](https://i0.wp.com/www.autismfamilypower.com/wp-content/uploads/2019/07/1977282_926319840728568_88001131831160246312_n1.jpg?resize=417%2C701&ssl=1)
I captured the moment. In a way I thought might gain Declan’s always floating attention and gaze.
It was Declan’s first day of preschool.
This image popped up in my Facebook memories from five years ago and made me take a step back. Or a look closer.
Or maybe just a look inward.
How have things changed.
When I took the photo, I was at a very low point in my life.
BACK THEN
It was a time of new beginnings. A new diagnosis I didn’t know anything about or understand. A new preschool. With a little yellow school bus.
The autism diagnosis surprised me. I hear a lot of people say that they suspected their child was on the spectrum and had them evaluated. I did NOT think Declan had autism but was encouraged to have him evaluated. Things were hard and different with Declan than with my other two, so I agreed. It was a life changer for me.
I began to see the diagnosis, not the child. I began looking for the diagnosis I had such a hard time seeing – until it was staring me in the face.
I told very few people about Declan’s diagnosis. It only took a couple of people saying, “He looks fine to me” or “My kid did that (behavior) too and they don’t have autism. Declan’s fine.” To realize support was NOT going to be coming from my then social circle.
This socially awkward introvert – the girl that wanted nothing more than to hide in a corner when in public? Was forced out to everyone’s attention through a child in some stage of crisis when in the community.
NOW
The little yellow school bus still comes and takes Declan to his elementary school where he continues to succeed with support from services.
The diagnosis was a life changer for Declan. He has never asked about autism but has recognized he feels he is “different” from his peers.
When Declan left that day to get on the little yellow school bus for the first time, our lives began to change – in the best way. Declan was supported. We were taught new skills to help him. Some days, some parts of every day, ARE hard. But we are all better equipped to help.
I see Declan, the child, first. Autism is just a part of Declan. And it makes him really special.
To be honest, I don’t know who knows or doesn’t know Declan (or Catelyn) are on the autism spectrum in my social circle. I’ve found the only time I really bring it up is when I am in a discussion with some other parent who has a child with different needs.
Yes, I have had to step WAY outside my comfort zone in public. But really, I found the people around me during a Declan meltdown are only there if I care to look at them – and I don’t care to look. Head down, eyes focused on the person that needs my help and attention.
Declan’s learned and matured so much. I have too.
Seeing this picture took me back to where I was completely lost with a new diagnosis. Thinking of the steps I had to take to even get such a “normal” looking picture. It was also a great eye opener to dispel all that sadness and confusion I had at the start.
And now all I have to say is “Smile!” to get a great big grin like this 😊
![20190712_163908[1]](https://i0.wp.com/www.autismfamilypower.com/wp-content/uploads/2019/07/20190712_1639081.jpg?resize=274%2C300&ssl=1)
We’re not talking about our diagnosis yet and we’re not sure if we even should. Everyone already knows him and has made decisions about who he is. What does the diagnosis change? Context maybe. Is it useful for others to know that? Grandparents would probably be the first people we would tell. I have no idea what my father would do with the information. He’s not particularly introspective. What do you think you would do in my shoes?
Catelyn was diagnosed at an older age and so I left it up to her to tell who she wanted. Although I did alert the school so she could have some sort of support – even if it wasn’t in a 504 I was hopeful for some understanding. We did tell our parents. I kind of remember you telling your dad about your conditions, but I forget what he said – if he said anything at all. If it were me, I would probably use that experience as my barometer. I guess I do tell people when it is relevant in the environment. This past weekend was a haircut weekend and there was a massive hour long meltdown in the place. I told the hairdressers but not the ten other customers in the room.
I know there are times I have said it and thought later, “I probably didn’t need to tell them that.” And other times I didn’t say something and wished I had. Sometimes context really does help. Sometimes it doesn’t matter to the person your talking to. It’s a tough one, Jeff. It took me awhile to talk about the diagnosis as I didn’t how or when – and I was getting a lot of negative feedback which shut me up even more. Now I disclose when I feel I need to. Sorry If I am rambly again. Hope any of this helps.
It is a tough one. Sometimes it seems like it would be a shortcut to better understanding, but it might be just as quick to cause stereotyping and low expectations. Or doubt. Or shaming, There should be a manual. I suppose there are support groups, but then I’d need to talk with people.
The manual would be fantastic, I agree. Support groups weren’t for me either. I felt very isolated at first. Then I started blogging and found my support group was here. And I could “talk” to people the way I felt the most comfortable – by writing. Other bloggers in the (sometimes) same boat have been very supportive to me.
I was devastated by Joshua’s diagnosis, but it helps to look back and see how well he is doing now. Very well written as usual!
Same! I didn’t understand the diagnosis was going to bring so much help and so much good change. Thank you so much!
Adorable young Declan. It’s beautiful reading about your growth.
Thank you so much!
We have that with Nathan, he’s really difficult to photograph. We actually managed to catch him smiling today and that was great. Declan looks so cute in his photos – then and now. Great post, Robyn. 🙂
Oh, that is great you caught him smiling today 🙂 Made me smile! Thank you so much, Alli! 🙂
Don’t know if this relates but in the service station last week someone made a comment about my son who had thrown himself on the floor (he was hot, the floor was cool) and I didn’t respond. In my head I was thinking bad words but I don’t need to explain my family to some eejit. We aren’t ashamed or anything but I don’t need to explain or make excuses for my kids to strangers. Family know as do school and professionals. If people want to go home and talk about that mad woman sitting on the pavement in the rain with her screaming child (as has happened) then it’s their little bit of tittle tattle for the evening.
Declan is looking as handsome as ever and very grown up these days. Really glad he enjoyed camp too, big steps for everyone!
That smile! I love it.
It’s so hard when you’re just learning about the diagnosis and trying to understand how to help your kiddo, how to keep them (and yourself sometimes) safe. So overwhelming, so isolating. It’s good to look back just to see how far you’ve come. It’s hopeful for the future too. 💌
It really is! If I could go back and tell myself everything was going to turn out better than I could have expected – well, I hope I would’ve believed myself. Because really, Declan is so happy and we are all doing so well. So good to look back in retrospect 🙂
The diagnosis can help clear the mind. Start to explain things then signpost the way to a giant mountain that needs climbing. But it also confuse the important things. You say it so beautifully. The bottom line is the smile first then other stuff after that.
Thank you so much!
Such an honest post. Thank you for sharing this part of your history with Declan .
Thank you, Anne!
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i have aspergers and m.e .i take part in a lot lot research
I had to suffer through Spongebob with both of my kids; but, they had to suffer through me explaining who Ernest Borgnaine and Tim Conway were…
Haha, I guess it’s only fair then 🙂
Thank you for sharing your story! I vividly remember the day I took my son for testing, he was 4. I sat and cried as I filled out the forms watching the doctor talk to my son and try to play with him. The dr. asked me why I was crying? “Because I am afraid you will tell me nothing is wrong and I just don’t know what more I can do. I feel like it is all my fault. I am q bad mom.” We had no clue. Everyone told us we just needed to be tougher on him, get a man in his life… All so wrong.
Oh my goodness, yes! Declan started services when he was 2 but I didn’t take him for a diagnosis until he was almost 3. And even at that point I had heard so many people just say, “Just give him to me for a week – I’ll fix him!” I can’t imagine what life would be like if we had never had him evaluated or supported. And even then, half the people didn’t believe the diagnosis – Declan was still just a behavior issue. I agree – All so wrong.