Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do you mean like there's a physical task he normally can do and then one day he suddenly can't? Or that he never can do certain things?

Op here. I wouldn’t say he’s declining but I also wonder if having someone step in to help when he struggled with things has left him a bit unable to do it for himself too. I worry about that aspect of day to day, oftentimes when he was confused by something we would step in and help him essentially doing the “job” but giving him credit for it. In hindsight, the same was happening and still is happening at school. I recently called to see if he had packed his sandwich in his lunch box, his teacher went to check and rather than have him confirm, confirmed for him.

I wonder if he’s not been given enough independence to learn how but because he struggled with things, I believe we all assumed we were helping him not hindering him.

I just can’t narrow down.

I have asked two sets of different pediatric groups for referrals and assistance to no avail outside of that initial evaluation. Because it happens at home and at school, I don’t know if it is possibly social anxiety, which is usually the only thing the doctor will mention if anything.

Op, I'm not clear if he has always been able to, for eg climb the pool ladder and now can't? Have you ever asked him to turn off a light before and he did it more or less effortlessly? And when you say it may be because he wasn't given a lot of independence, do you mean you either turned the light off for him or you said something like "put your hand on that white switch on the wall and move it down towards the floor"? At age 11, it doesn't matter how much you guys did for him, these are fairly simple tasks that he's presumably observed and participated in many times. If I were you, I would go back through the years and try and write a detailed history of when you remember him doing basic tasks (turning on lights, faucets; putting on pants; making his bed however simply; combing hi hair; responding to 1/2/3 step commands; etc). Think about these questions/issues:
-Has he ever mastered one of these tasks?
-Has he lost dexterity (he can't physically do it) or comprehension(he doesn't know what he's doing)?
-Or did he ever have the skill to begin with?
-Put ages/dates around all of these events
-Give concrete examples of him doing 1-2-3 step requests (3 step - go upstairs, brush your teeth, turn off your light) and the dates/ages when he could or note if he can't. Also, try to remember if there are variables that stop him from doing some 1-2-3 step requests better or more consistently than others (cognitive vs physical exercises).

Your son sounds like my daughter did before she was diagnosed with epilepsy. However, in my girl's case, she lost her skills rather than never having attained them. That's why your situation feels neurological to me. I'm not trying to scare you, but I think you're right to pursue this further. Good luck

Anonymous wrote:

Anonymous wrote:Do you mean like there's a physical task he normally can do and then one day he suddenly can't? Or that he never can do certain things?

Op here. I wouldn’t say he’s declining but I also wonder if having someone step in to help when he struggled with things has left him a bit unable to do it for himself too. I worry about that aspect of day to day, oftentimes when he was confused by something we would step in and help him essentially doing the “job” but giving him credit for it. In hindsight, the same was happening and still is happening at school. I recently called to see if he had packed his sandwich in his lunch box, his teacher went to check and rather than have him confirm, confirmed for him.

I wonder if he’s not been given enough independence to learn how but because he struggled with things, I believe we all assumed we were helping him not hindering him.

I just can’t narrow down.

I have asked two sets of different pediatric groups for referrals and assistance to no avail outside of that initial evaluation. Because it happens at home and at school, I don’t know if it is possibly social anxiety, which is usually the only thing the doctor will mention if anything.

Anonymous wrote:

Anonymous wrote:Does he must stop like he’s frozen or asleep? Is it possibly be a seizure?

I was also wondering if this could be absence seizures.

Anonymous wrote:Does he must stop like he’s frozen or asleep? Is it possibly be a seizure?

Anonymous wrote:Might have a progressive neuromuscular disorder. Get medical testing first.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. I’ve requested developmental pediatrics referral, specialist referalls, I have asked about autism, I was told things like not all children are “athletically inclined” and that clumsiness didn’t qualify, “sometimes it just takes time to figure out how he learns”. But I continue every year to see what I can determine from the school and medical side. It’s just finally I hav the school willing to do an IEP evaluation and now I cant seem to get a pediatrician on board for further evaluation. Neuropsychologist aren’t covered by our insurance.

I just feel like I’m out of options in a way.

For the pool situation, it is something I really don’t know if he had ever tried on his own before. I know instructors have always helped with getting up onto side when you jump in from seated positioning. Then I am hit with the realization again, if what is he capable of vs. what do we just hop in and help him with and does that mean he hasn’t learned it properly.

Milestones were not a problem, and a lot of the verbal side wasn’t that he didn’t have the words for what he wanted to say, it was doctors who would say it’s a timid, shy, kid, common response path. He will talk and does talk when he wants to. Many responses of how they see children every day and this was all within the range of nothing concerning .

I also struggle if maybe I’m looking too deeply and this is all a part of development.

We pay for therapies for our child that insurance doesn’t cover. What would happen if you counted up all the money you and your spouse spent on yourselves in a year? Last year, I cut my monthly discretionary expenditures to about $50, plus I found myself cheap/free Christmas and birthday presents. (If you look all year, you can find a new enough book at a few little library.) I didn’t buy brand new clothing, I cut my own hair, and we rarely ate out. DH also saved money from his budget. We’re in a fortunate position where we raised about $2,500 in a year from those kinds of drastic cuts. I’ve paid the price for sure, but my kid needs the help. That’s the only way we could pay for it because we’re also paying for other therapies.

The other thing to remember is that drastic cuts can be for just a season. I’m going for my first haircut in ages this week, I bought a new shirt this month, and we ate out for Mother’s Day. All this to say, don’t automatically rule out a neuropsych because insurance won’t pay for it. You might decide that you’re budget has more wiggle room than you’d thought.

Dp. A neuropysch runs about 5k and it isn't even clear that this would be helpful for OP (speaking as a parent whose child has undergone one within the last year).

OP, the poster saying this is not a ped issue is right but the ped may be better able to guide you to the appropriate next steps.

I know you said the ped didn't take you seriously before, but I wonder how that conversation went. It's so easy to forget details during a short checkup. Were you able to go into as much detail with your ped as you have here?

Seeing an OT sounds like a good step, but I would worry that an OT could find issues that do need to be worked on, while missing other potential medical problems.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Op here. I’ve requested developmental pediatrics referral, specialist referalls, I have asked about autism, I was told things like not all children are “athletically inclined” and that clumsiness didn’t qualify, “sometimes it just takes time to figure out how he learns”. But I continue every year to see what I can determine from the school and medical side. It’s just finally I hav the school willing to do an IEP evaluation and now I cant seem to get a pediatrician on board for further evaluation. Neuropsychologist aren’t covered by our insurance.

I just feel like I’m out of options in a way.

For the pool situation, it is something I really don’t know if he had ever tried on his own before. I know instructors have always helped with getting up onto side when you jump in from seated positioning. Then I am hit with the realization again, if what is he capable of vs. what do we just hop in and help him with and does that mean he hasn’t learned it properly.

Milestones were not a problem, and a lot of the verbal side wasn’t that he didn’t have the words for what he wanted to say, it was doctors who would say it’s a timid, shy, kid, common response path. He will talk and does talk when he wants to. Many responses of how they see children every day and this was all within the range of nothing concerning .

I also struggle if maybe I’m looking too deeply and this is all a part of development.

We pay for therapies for our child that insurance doesn’t cover. What would happen if you counted up all the money you and your spouse spent on yourselves in a year? Last year, I cut my monthly discretionary expenditures to about $50, plus I found myself cheap/free Christmas and birthday presents. (If you look all year, you can find a new enough book at a few little library.) I didn’t buy brand new clothing, I cut my own hair, and we rarely ate out. DH also saved money from his budget. We’re in a fortunate position where we raised about $2,500 in a year from those kinds of drastic cuts. I’ve paid the price for sure, but my kid needs the help. That’s the only way we could pay for it because we’re also paying for other therapies.

The other thing to remember is that drastic cuts can be for just a season. I’m going for my first haircut in ages this week, I bought a new shirt this month, and we ate out for Mother’s Day. All this to say, don’t automatically rule out a neuropsych because insurance won’t pay for it. You might decide that you’re budget has more wiggle room than you’d thought.

Dp. A neuropysch runs about 5k and it isn't even clear that this would be helpful for OP (speaking as a parent whose child has undergone one within the last year).

OP, the poster saying this is not a ped issue is right but the ped may be better able to guide you to the appropriate next steps.

I know you said the ped didn't take you seriously before, but I wonder how that conversation went. It's so easy to forget details during a short checkup. Were you able to go into as much detail with your ped as you have here?

Seeing an OT sounds like a good step, but I would worry that an OT could find issues that do need to be worked on, while missing other potential medical problems.

Anonymous wrote:

Anonymous wrote:Do you mean like there's a physical task he normally can do and then one day he suddenly can't? Or that he never can do certain things?

Op here. I wouldn’t say he’s declining but I also wonder if having someone step in to help when he struggled with things has left him a bit unable to do it for himself too. I worry about that aspect of day to day, oftentimes when he was confused by something we would step in and help him essentially doing the “job” but giving him credit for it. In hindsight, the same was happening and still is happening at school. I recently called to see if he had packed his sandwich in his lunch box, his teacher went to check and rather than have him confirm, confirmed for him.

I wonder if he’s not been given enough independence to learn how but because he struggled with things, I believe we all assumed we were helping him not hindering him.

I just can’t narrow down.

I have asked two sets of different pediatric groups for referrals and assistance to no avail outside of that initial evaluation. Because it happens at home and at school, I don’t know if it is possibly social anxiety, which is usually the only thing the doctor will mention if anything.

Anonymous wrote:I’ve posted in Elementary kids as well. Hoping to get additional feedback in this forum.


He’s always been very quiet and timid. At one point, around age 6, he was evaluated for selective mutism and deemed slow to warm instead.

Over the years his personality/temperament remained the same. In a classroom setting he was allowed to work in small groups and teachers would notice he would only engage in those groups and with those friends. In an effort to keep him progressing socially, even when he tested out of say a reading level small group, they allowed him to stay and used it for socializing.

He’s now going into middle school and small group socializing is still happening but one on one instead with the teachers and that is where they say he is most social.

I’ll notice when he’s asked to do something he seems unable to do it physically. He was to cut the icing packet on toaster strudel the other day and seemed to not know how to hold the scissors to make the cut (fingers right where the blade tip could cut your fingers instead). Other examples include when he’s getting dressed in the morning, putting on pants on top of his pajama shorts and going the entire school day with both pairs on.

I asked him to turn off the porch light this morning as he was by the door and he just looked and said it was on. He seemed somewhat unsure of what to do. Common occurrences like this where he seems out of place for his age or ability or unsure of a situation that happens every day for years.

He will ask where to place his socks before a shower when the daily routine is to put dirty clothes in the hamper and socks in a sock bin beside the hampers.

Another recent example was at an indoor pool he seemed unable to get out of the side of the pool. He’s taken swimming lessons for a few years now and the instructor had to push his bottom up for him and explain how to push up with his arms.

I requested an IEP evaluation thru the school and they plan to do one this summer.

Doctors do not feel it’s adhd. They have said maybe a little social anxiety but much of this is a home setting with the same family members for over ten years now and every week day school setting with the same class and teachers.

I’m at a loss and worried that I’m running out of options. I bring this up to every pediatrician and they just essentially shrug it off as nothing of concern. It just feels like it’s something needing attending to, to me.

The unfamiliarity of common situations and inability to physically complete common tasks, what may that be exactly?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Pediatricians will not be helpful here. I would get an excellent private OT assessment (even if you can’t afford to continue with them) while you wait for other testing.

All of this reads like motor planning, non verbal learning, low tone, sequencing, etc—which is suited toward an OT.

Also curious how things went with bike riding , drawing , hand dominance , etc.

We are still working at bike riding, he has taken an interest to pc/computers, can work a handheld game console part (the one you hold onto), struggles with tying pants and laces.

This explains a lot- too much screen time.