Completely lost parent...

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I need to apologize in advance for the super long post. If you make it to the end, Thank You!

I've been staring at this empty white screen for several minutes now - I just really don't even know where (or how) to start. I guess I'm looking for advice, but even more than that, maybe just knowing that I'm not completely losing my mind some days would be amazing.

My son is 10 now, and he's been "different" for every single one of those years, in varying ways. Several illnesses and allergic to seemingly *everything*, things have never been easy with him, but he's also always communicated differently than others. When he was little, he would come home from school where I would have to re-teach him his school day. He's always had an abundance of intelligence, he simply never could get on the same page as his teachers.

About 5 years ago, I started suspecting that he was ADHD. After doing some research, it was like a while new world had opened up. I never wanted to medicate him, and an extra dose of understanding and a bit more patience, structure, and scheduled routine did wonders. Problem solved.

A few years later, though, we hit another rough patch with behavior and none of my old tricks were working. This led to more research. What I found seemed to be an Owners Manual for my kid. All of a sudden, countless things that I had never considered related were part of a massive connect-the-dots puzzle.

I felt like I had to teach him the concepts of empathy, sarcasm, and humor (Think "Sheldon", on Big Bang Theory). The literal way he processes everything, rigid, "OCD", random ticks, the repetition while watching TV - it all made sense! Finally!

Which brings me to my current predicament and question - I noticed a years ago that his possible "ADD" was getting worse. Now, I'm realizing that his possible Aspergers is getting worse. The ticks and repetition are becoming more pronounced, grades are continuing to drop, and asking him a question seems to be sending us deeper and deeper into the rabbit hole before getting around to the answer. His movements while he's still are becoming more frequent, more repetitive, and much more pronounced, almost similar to a Parkinsons patient. He only does it when he's still, though (watching tv, eating dinner, etc.)

Is it possible for this to escalate with age, or is there possibly something else going on with him? He had a seizure, randomly and out of the blue, about 2 years ago, so he had all of the follow up scans and tests then, and everything came back completely normal.

Between the parenting frustrations, and the outright worry that it's something else, I think I may be losing it a little bit. I think I'm hoping that with all of the combined research, experiences, and overall knowledge that seems to be here, someone might be able to point me in a general direction of something that makes sense.

Anyway, if you've made it this far, Thank You. Sincerely. Anything that you may be able to contribute would be appreciated.

It could be that you're just noticing it more. Or he's just letting it loose more but the potential was always there.

Have you had him evaluated by a doctor? That would probably give you a clearer picture. I suspected for years that my son was ASD, but having an official diagnosis help things make much more sense.

I think school, in particular, causes more difficulties on kids as time goes by. They have to deal with more changes (often more than one classroom teacher, perhaps not the same daily routine), more demands (harder instructions, less help with work, more abstract language/inference, longer and less straightforward assignments) and more complicated social relationships. This increases the stress, and the gap that gives the spectrum the label of "developmental delays" seems more apparent. What is interesting in the case of my daughter is that the gap got huge all of a sudden (at 11) and is now (at 15) closing in. She herself says that things started to click last year. We talked endlessly about learning styles / differences / difficulties (like hyperlexia, in her case), and she started to connect the dots. I do this because... If I do it this way... An example of this is... (examples is how she learns best). I think that once there is a certain level of understanding of what being on the spectrum means and how they can work with or around it in different ways, things get easier.
I would suggest just talking talking talking about it. Lots of help with homework, and supports at school. If he doesn't have an adequate IEP/SEP now, work on it.

My daughter who is now fifteen sounds a lot like yours and I wou really appreciate more information about how you are helping and what is helping her pm or on the board either would be great

Some of the things I found helped: (using "he" because I'm not just talking about our daughters, but others as well)
For empathy and awareness of feelings (my dd would get A+ in this now!): 1) state your feeling and gradually expand feeling vocabulary: start with "I'm mad" with no explanation, develop to "I'm a bit frustrated because things didn't go as I planned. I wanted to (etc.). 2) state what you observe about your child (if your child will tolerate this; mine used to argue, so I'd go right to the question), and his feeling: "You seem having trouble concentrating. Are you worried about something?" 3) talk about characters on TV shows. I would pause the TV and say: "He looks really scared, but I can't figure out why." 4) when he is *not* anxious about something, talk about how he felt in a situation in the past, and how he feels about that now. This is tough, and doesn't work if he is nervous. But it gradually helps him "relativize" things. "Remember when you were really nervous about going to x, and now you enjoy it. I'm so glad that's fun for you now." No moralizing, and no, "try this because it always ends up being fun." 5) when he gets good at "reading" TV shows, then you can talk about real people. "I wonder how so-and-so is feeling about getting in trouble at school. Do you think he is mad or embarrassed?" 6) do *not* talk about his feelings when anyone else is in the room with you. (We had a meltdown about invasion of privacy re: someone overhearing.)
For instructions and negativity: 1) avoid lectures and drama. Just state the facts. "It's time for bed." (With my other kids, I used to soften the "rules" by saying, "You know, if you don't go to bed by x you'll feel tired and" etc. dd hated this. 2) text. I *love* texting. It avoids confrontations a lot. 3) the rule of thumb is praise 10 X for every 1 X you criticize. Again, texting is great because you can send a thumb's up, etc. 4) make lists and teach your kid how to make lists. Teachers often help with this if you ask. Sometimes our kids need more time to copy down their homework, and that's an easy fix in a conversation with an elementary school teacher. It gets harder in middle school and once they have many teachers, so it's good to start practising early. Then you start everything you do with a list. Model it by reading recipes, making grocery lists, etc. 5) ask the teacher to allow your child to ask questions during class or during tests, and encourage him to do it. Model that by saying, "I'm not sure what your teacher is asking for here. It could be x or y. Could you ask her tomorrow "Should I do x or y?"
For summarizing (a big challenge for my dd): 1) read aloud, keep reading stories at night etc. even if your kid makes you do it in secret. 2) read to your kid, or have him read to you, and stop after every paragraph. Summarize that paragraph in your own words. If he is writing a book report, dictate your summary to him afterwards. Learning to take notes is really important. 3) work up to reading a paragraph out loud and asking him to summarize it in his own words. You may have to dictate what he says when he writes it down. It takes a long time, but it is so good when they can understand what they're doing.
Hope this helps...
J.

As my kiddo would say, "Ya'll guys" are amazing!

It's never been a priority to have him tested or officially diagnosed, because it simply wasn't really important to have a label on him. He was simply "D", and it was enough to educate myself on how best to teach him and to simply interact with him. At this point, I'm starting to see some real benefits to going further than my own online research, though.

And sorry to write a book about it...
J

I LOVE books!

You may be reaching the point where he needs accommodations at school, in which case you will, unfortunately, need some sort of label. If you can get that through the school and have it suffice to get accommodations, then it will also be something your child could leave behind when he is done with schooling.

ASD becomes more noticeable around your son's age in large part because the other kids tend to make leaps in development that ASD kids usually do not. The expectations placed on him, and the things he will be expected to understand but developmentally won't be able to, are going to rapidly increase over the next few years. Having strong organizational / executive function skills, being able to read into symbolism, metaphors, and more are all about to become skills that the school will automatically assume he has, even if he is nowhere near ready for them.

It is also possible that he has some sort of neurological co-morbid and I do think you should consider if that needs to be checked out. I guess my bright line for that would be if he can control his movements and ticks for an extended period of time when asked to. If they only show up at home, for example, then he has control (but not enough for you to try to suppress them at home - controlling them no doubt adds stress for him).

So, I'm assuming the increase in ticks et al is one of three things: more noticeable because the other kids are providing a sharper contrast; more frequent because of increased expectations, pressure and stress; or an unidentified neurological issue; with one of the first two being the most likely.

If he is ASD, your son will soon enter a very tricky age, between increased societal expectations and hormonal changes. As much as I think it is wonderful that you've managed everything so well so far with your instincts, I wouldn't wait to see how it goes anymore: you have to decide to either get an IEP or 504 so that you can pull in the school as issues arise in middle school, or be ready to pull him from school and homeschool if everything starts to go sideways. While a few ASD kids get into middle school and find it suits them perfectly, more often it is when all the issues suddenly jump into sharp relief and a brilliant child who can't get organized is suddenly failing.

Which route you will want to go depends in part on how well your school does with ASD kids, and how accepting your community is. I suggest getting the gears moving towards testing, while also researching the school and district attitudes and effectiveness with ASD kids; get the word from other parents, if possible.

Things seem to often improve again by the middle of high school, if the right building blocks have been placed, so if you really don't want to consider a label, that might be something to keep in mind, while designing an alternate path. I have nothing official on that timing; it is just what I feel I've observed over the years.

Your subject headiang for this thread is "completely lost parent". What are you most lost thinking about?

Hi DallasPuzzler,

So if I understand correctly, you're trying to find ways to deal with what seem to be increasing symptoms of either ADD/ADHD and/or Asperger's. A seizure out of the blue with normal test results is certainly a concern. Was checking into environmental or dietary factors part of the assessment of possible causes?

Welcome to WP!