Mom&Kiddo: 1 ASD dx the other ???

Post Reply New Topic

*warning, silly long post incoming! TLDR: Hi I'm new, kids dx asd I think I might have it too*

Hello. I'm a mom to a recently diagnosed ASD 5yo male kiddo. I'm just starting to accept his diagnosis, it's been hard, part of why it was hard was I found myself answering so many questions to his Dr and the Psychologist that dx him with "not more than I am" (i.e. is he sensitive to light/sound/temperature/etc etc). I really didn't want to believe that he has this "thing" that makes him see the world differently. I'm not sure why because I've never considered myself "normal" but I guess I hoped he would have a better time than I did when it came to getting along with others at school.

I knew though that there was a chance he would have it. He is adopted and his biological father is an aspie and his biological mother is bi-polar, so mental health was a concern from the beginning. These things were known in advance, and so I've gone back and forth (and so have his doctors) about whether he did or didn't have some form of asd/as. He has always been very friendly with people, he likes cooperative and imaginative play, he doesn't show any major sensitivity to sensory input aside from a few extra ticklish spots and not liking to touch hot things (this was a big "not any more than I am" subject) and I really focused on that at first. How can he have a sensory processing issue if he doesn't act anymore sensitive to things (than what I considered "normal") He DOES however have a major speech delay. He's just now starting to communicate around the level you'd expect from a 2 year old. He also does some unusual hand movements...but part of my concern was because the hand thing is something that I DO and I worry he just learned this behavior and it isn't really a "trait" if that makes sense. I played "handbug" with him quite a bit when he was little and he still thinks its hilarious. I didn't think much of it, I tend to flap, wring, rub, or knuckle-pop when I'm feeling strong emotion, I try to minimize it in public but I just didn't think it was that big a deal. He just needed to learn that new people don't want to play handbug.... That one made me start wondering after we got his official dx if maybe my normal wasn't NT. He's now in a summer school program through a local private school, taking speech therapy, and starting o/t soon, trying to get him ready for starting kindergarten in the fall. He didn't go to k3 or 4 because he didn't have any speech at all really and I didn't think he was ready...but now he has to go and I'm concerned about not knowing how getting him intervention services works.

I've finally accepted that yes, he is ASD and not just a speech or motor delay. The other big tipoff was once I started really looking into asd and saw people talking about transition meltdowns. HE DOES THAT! What I had just seen as him being willful now makes much more sense and I'm able to help him prepare for shifts in place/activity better which is helping the behavior around it. Hopefully as time goes on I'll get better at helping him through transitions.

As I was watching videos most of them were about children (how I found out about wrong planet was from finding a video with a panel of aspies and it was mentioned) but out of curiosity about what he would be like when he got older I decided to look at vids of ADULTS with asd/as and it felt like a bolt of lightning hitting me when the first person began relating how they felt during normal activities. He was describing the way I feel inside all the time! Maybe the kiddo isn't the only one in the house dealing with this and all these years I just attributed myself as being weird and didn't think that much more of it.

I cannot walk into a crowd unless the reason is almost literally life or death. I can walk WITH a crowd but it feels like my insides are squirming worms and I wish the ground would swallow me. Sitting in crowded places I pretty much HAVE to get against a wall, I would almost certainly burst into tears and flee if I had to sit in the open in a crowd. I'm just uncomfortable in busy (even if not crowded) places, I can tolerate it, but I don't like it.

The hand thing. I didn't do it as much as a kid, only when I was REALLY upset, but as I've gotten older it's gotten worse. Confrontation, frustration, being overwhelmed...I flap like I'm trying to dry nail polish. When I was a teen I would have likely cut myself to achieve the same relief from that pent-up feeling (don't worry, that problems long gone years ago). It's like I'm trying to cause a mini endorphin rush. Believe me I'll take the hand flapping! Still I didn't really think it was a symptom of anything other than that I let myself get too worked up about things. I have the same sort of "pent up" type feeling about happy feelings too, in those situations I tend to do a hand rub (like putting on lotion) with a finger stretch at the end. I don't realize I'm doing it til I'm doing the finger stretch :/

Attachments: I just don't get people most of the time, at least not in person. I'm not too bad at getting along on the internet, message boards and the like I'm fine, but in person I can "fake it til I make it" but I don't usually become friends with many people. It doesn't even usually occur to me to make friends if that makes sense. I have a few friendships that will likely be life-long and are very close, but when friendships get hard or stale I tend to just "cut off" and go total radio silence. I just never know what to say to mend gaps even if they are minor. Those lifelong-ers I mentioned have their own issues and they get it, so we go silent for a while then pick back up like nothing ever happened. Most people though, that won't happen with, if we make it to casual friendship at all the first thing that rocks the boat capsizes it I also tend to read tired looks as angry looks but other than that I'm mostly ok at eye contact (sometimes I stare a little) and at reading body language.

I LOATHE speaking on the phone. I would rather travel an hour to make an appointment at a dr. office in person than to call them. I don't have the best hearing is part of it (I hear a background hum/buzz most of the time and I feel like I have to process everything I hear after I heard it and I get hopeless lost if I can't see mouth movements) and the other part is that while I'm in the conversation I'm ok but after I hang up theres always a million things I think I should have asked and have trouble re-telling someone else what exactly was said.

Interests: This is another one where "not more than I am" came into play. The kiddo loves trains, monkeys, and minecraft (and lately motorcycles too) I really didn't think his interests in things were out of the ordinary..but then I'd probably drawn well over a billion horses by the time I was 12...so was I really the person to judge what is a normal amount of interest in a subject or hobby? The trains and monkeys were things we decorated his room with before he was born, I think we sort of "gave him" those ones, I didn't think it was odd that a child who was given monkeys and trains to play with and look at all the time liked monkeys and trains...and then he saw us play minecraft and he had that angel singing moment LOL He will play at any opportunity and if he's not allowed to play it but is allowed to mess with his tablet he looks up minecraft videos (I still curious how he typed it into the search, I'm guessing he used voice to text but I still wish I'd seen it!) He's just starting to get his speech to where he can tell people about minecraft and what he knows. Again, I didn't think it was odd since my gaming friends have referred me as a walking database before.

Other Quirks: I cannot do math in my head...at all. Don't know yet about kiddo, but I get flak all the time for my issues with math. I can read something in a book, or write something on a piece of paper, or look at a picture and go away for an hour and probably tell you what I read/wrote/saw...unless it's numbers. For some reason they just don't stick! I was okay in school, they always want you to show your work and as you get higher in grade it got more lax as far as the basic math & calculators, but just general basic math, even addition and subtraction, if it involves enough digits I just cannot remember them if they are spoken or shown then taken away This is one thing I wish I could find a way to fix!

I went to aspietests dot org and another test site (i don't remem the name but it was a 150 question test just called aspie quiz) and I got about half n half responses. The ones that seemed to cover many subjects/aspects scored me very much aspie, some of the others focused more on the body language and chit-chat type aspects and those passed me as NT. I really don't have the money to go get a diagnosis and I don't know that I would do anything with a dx if I had one but I'm starting to think that the kiddo is not the only one on the spectrum in this house.

Hoping that wrongplanet can help me find coping mechanisms for parenting, trips/tricks, and maybe to learn ways I can deal with other people better as well

Hey Feyranna and kiddo welcome.

Welcome to Wrong Planet!

thanks for the welcomes

Hi and welcome!

Are you considering pursuing a diagnosis? (It's okay either way, I'm just staying in the conversation.)

I was diagnosed at the same time as my son (he was 6, I was 30). I think it's a common enough phenomenon, but it usually relates to genetics, which obviously is not a part of your story.

I have a daughter (NT) going into kindergarten next year, too. It does really sound like your son is quite delayed, so I'm glad he's getting help now. (I had a lot of trouble with speech as a child...and I did not get early help--definitely not at 5 for my speech even though I obviously needed it. As an adult, I still really struggle.)

I can relate to your "does he do this because I do or because he would have naturally?" question about your hand movements. I have an AS son and an NT daughter. Both play with their toys in more stereotypical ASD ways. But, whenever I played with them, I tended to sort and organize their toys. It makes sense that they would mimic what they see.

I have also been known to drive hours to avoid making a phone call. I really hate phone calls.

Welcome!

Thanks for the welcome!

If the finances were there I probably would, just to know, but as it is I likely won't. As it is I have a career that works with my quirks so it doesn't really matter now but in the past employment was an issue (thank goodness the guy that was right for me also didn't care that I stayed home until I found something that worked!) I'd like to know, but not badly enough to try to carve out the kind of cash it would take since I doubt its covered by our insurance (walmart insurance).

His summer school teacher says he does well for a while, then she loses him, then after a while he wants to join in again. He's very expressive and seems to be able to always get his point across he just really does not like to resort to using words. Neither me or any of his therapists know what his full vocabulary is because when he does talk it's in sentences. Only in the last few months has he really started to open up with partial sentences and a willingness to say words he can't say quite right yet.

He switches back and forth with toys too. He lines them up, then takes them and plays with them, then lines them up again when he's done. He does always try to involve people around him in his play though.

I'm starting to get excited to see what further therapy and school does for him, but very nervous about figuring out the school thing. I'm always saying Google is my friend, guess I need to start googling "how to enroll for services for children"

Yeah! I'd start by seeing what's available in your area. But, you did say that he is starting speech and OT, right?

The book, "The Out of Sync Child" might be helpful for you, as well.

Welcome

yea he's been going to speech for about a month and had an o/t evaluation where they recommended 2x/week o/t just waiting on insurance to clear it which shouldn't be a problem. He goes to sunday school also and as long as they stick to a regular day he's fine there...they like to switch things up a lot and do singing or skits in front of the whole church sometimes though and those days cause issues. If he's excluded he's upset, but if he's included he can be distracting since he doesn't follow along with the arm movements they're suppose to be doing :/ Honestly I wish they'd just keep the kids in their classroom and let the adults have their service without having to deal with kiddos but maybe that's just me being crusty. I know its supposed to be cute but for me it turns my relax day (and my one day off work) into a stress day.