Connor Update

Hi family and friends! I was invited to participate in an autism awareness event this month and it had me realizing that we haven’t talked about Connor and where he’s at in such a long time. I decided after seeing some Instagram votes that it was time for an update on his developmental delay diagnosis. Currently Connor still has his sensory processing disorder diagnosis and has moved past his developmental delay diagnosis. This step came almost a year ago at the end of Kindergarten. Connor has made a lot of progress with his motor skills and his speech and between those significant jumps in improvement and the accompanying improvement in his communication, his team of teachers and aides felt that he had upgraded to a status above a widespread delay. After hearing this, we agreed that it was something that should be done. His I.E.P allows him speech and occupational therapy each week because he’s far from benchmark on those and still needs supplemental help, but we’ve chosen to celebrate that step he’s made in leaving the developmental delay diagnosis behind and continue to work on those specific areas as needed.

While in 1^st grade, Connor has been participating in a social-skills learning group. This group is typically reserved for the kids with more problem behaviors or an autism diagnosis, but it’s something I really pushed for and that I felt would benefit my son. The rest of the team agreed that it could really benefit him even though on paper, it’s not necessary. Connor has this rather remarkable ability to keep himself composed at school, but the second he gets to a “safe place” at home, he lets it all out. No joke, he literally bit our neighbor this last week (something we thought he had moved past a long time ago). He would never have done that if he was at school, but at home, he’s got some social delays that really jump out.  Some people take his quiet, obedient behavior at school as a sign that he’s got perfect social skills, but they fail to see full impact social situations have on him, or I guess, the lack of impact. His social skills are still very far behind. He struggles with friendships and honestly doesn’t seem to even realize if he has them or doesn’t. As a parent, it kills me that he doesn’t know when someone doesn’t want to be his friend. I’ve personally seen it. He doesn’t get it. On one hand, it’s so precious to watch how he calls everyone his friend, but that double-edged sword hits when I remember that as he grows, he’s going to come across more and more kids who will be pickier about their friendships and who will most likely be less than kind about it. This is just a brief overview of his struggles, and only time will tell if his social skills will progress as he grows.

In addition to his social problems, we also have a great deal of sensory problems that Connor struggles with. I would say the biting situation that I mentioned earlier stemmed directly from his sensory problems. Sensory processing problems can be a little difficult to understand if you’ve never dealt with them before, so, here’s a quick rundown: A child with a sensory processing disorder can be over-sensitive or under sensitive to sensory stimulation (sights, sounds, smells, feels, tastes) and can find it overwhelming or in some cases, underwhelming. In those cases, they seek out this stimulus because they like it (for a quick very exaggerated example, kids who are obsessed with flashing the lights off and on could visually love that stimulus).  Connor struggles with being overwhelmed by stimulus.  He needs to wear sunglasses in the summer a lot of the time. If he doesn’t, he gets really snappy and grumpy and cries and screams. To the unknowing eye, it looks like a tantrum, but it’s not, it’s a melt-down. He can’t function because he’s so overwhelmed by the brightness of the sun. He will say “the sun is too loud” and he “can’t think”. When he was younger he hated the swings with metal rings and bars because they squeaked. The sound would make him cover his ears and shrug his shoulders up as if he was trying to do a double-layer of protection. Even now he can’t think clearly when there’s too much noise. He’s able to verbalize it now, and just the other day told me “Don’t yell at me! When you talk so loud, it makes my brain not think!” (I wasn’t necessarily yelling, just loudly repeating myself because he wouldn’t give me the time of day when I was trying to talk to him). It took me a little bit to fully decipher what he meant. And if you’re thinking how incorrect that English is, just remember that I mentioned his speech delays. We waited until he was four-years old to hear him put together a single 3-4 word sentence, so when he talks, we’re grateful, no matter how convoluted or improper it sounds for a nearly 7-year-old.

He’s always been the pickiest of eaters. He will not eat casseroles because he doesn’t like his food to touch. If you change the seasonings, he won’t eat it. If you change brands, he knows. His gag reflex belongs in the book of world records. He once choked down a tiny bite of broccoli (I was so proud for a whole minute!) and then puked it up all over Olive Garden. He’s actually done it several times. I know because we tested it. Eating is such a struggle for him. He even gags on liquid medicines. He had chronic ear infections his first 4 years of life until his second set of tubes and an adenoidectomy, and we started having to resort to giving him a shot on his butt because he would puke up his prescription.

IT. WAS. THE. WORST!

When we’re at the park he loves to run around, but he’s super sensitive to temperatures. If it’s too hot, he melts-down like the Wicked Witch of the West having water thrown at her. And if it’s winter and you’re caroling without something to warm that child up, you might as well freeze time because nothing productive is going to happen until you get some hot chocolate in his hands (for his hands specifically, because he won’t drink it hot. It has to be lukewarm). We often struggle when we’re at a playdate or the gym daycare and there’s excited, noisy, energetic kids in a small enclosed space. Connor will be so excited at first, but eventually he flips out. Without fail, the enthusiasm will end with me telling him to take deep breaths and him covering his ears and screaming that he needs quiet. It’s awkward and embarrassing, and I often get looks from people like they think that I’m a crappy parent and he’s a crappy child. And to be perfectly honest, it REALLY hurts when it’s friends and/or family that do it. It hurts A LOT.

I know that parenting is supposed to be filled with awkward and weird I’ll-laugh-about-this-later moments, but it’s always been really tough for me that they happen ten times more often with my Connor-boy than they do with his younger two siblings. When we first started our evaluation and diagnosis process over 4 years ago, I think part of it was because I was desperately seeking some kind of answer – an explanation, if you will – that I could give people so that they wouldn’t judge me. One thing I can tell you is that as a parent, I often feel so, so judged over Connor’s struggles. It makes me wish we could all just have flashing facebook statuses on our foreheads that say “my child Is not misbehaving, they have ______. PLEASE be understanding!”. If we could do that, then maybe people would see that we all are fighting our own battles that you can’t see outwardly and know just how precious our Connor really is!

I tried to cover everything I could think of, but if you have a question I missed, let me know! I’ll gladly answer it.

-