Feeling sad and sick to my stomach.

[Anonymous]

We have been told by a couple of professionals that our son may have a cognitive delay, and I've posted about it before. It's not clear because he has severe ADHD and he had a receptive language delay which has abated. He's almost five. When he was there, the dev ped noted a possible six month cognitive delay but said it could be due to fine motor deficits. He did not qualify for child fund until 4, and they found cognitive delays, but he did not cooperate at all. He is thriving in pep, and is apparently in the top group academically, fwiw. He's good at numbers and letters. He can write his name. He is conversational. He's extremely defiant and I don't know if it's because he does not understand sometimes. He's okay on self help, can dress himself other than his shirt, toileting is good. He can ride a bike with trainers and swim. So in a lot of ways, he's doing well. but his behavior is often so odd that it makes me think he must be cognitively delayed. Socially he does things to annoy people and just weird stuff like will bite something or when at a bounce house will spend the whole time trying to climb up the slide, bite the puck for the hockey thing, just crazy weird shi$. Part of the issue is we are not going to know until we can do a neuropaych and I don't want to do one until he is 7, because he has had delays that have normalized.

Did anyone have a similar child? I'm just tired of worrying about this. I know I'm not going to know for sure for years but given that we know he's not autistic I'm not sure what other explanations there are for his weird behavior. And we have done and are doing ot and ABA and speech.

[Anonymous]

Note that when he was there should be when he was 3.

[Anonymous]

I know kids with ADHD who have similar behaviors. It's attention getting. Often. Or just not knowing how to engage socially. These behaviors seem fairly usual to me for a 5 yo with some SN. (I realize that doesn't make them easier to deal with.) I liked Russell Barkley's books on parenting kids with ADHD. It doesn't mean he is cognitively delayed, but social skill delays can impact other areas.

[Anonymous]

Yes. You treat the symptoms, OP. If there are motor deficits you get OT, etc. ADHD you may want to consider medication. It's basically wash, rinse, repeat.

[Anonymous]

I don't know why you would wait for an assessment. A lot of what you describe sounds like ADHD. Even an insurance-reimbursed assessment at a hospital would be useful behavior-wise. Plus this is eating at you, which I totally understand. I did a neuropsych to rule out ID for my kid. No, he doesn't have it but he does have scores all over the place and we still have no idea what kind of prognosis we are looking at.

Here's the thing about the assessments--one eval is not going to be the final word. For a kid with ADHD even getting through the testing is hard and your first go around, if you aren't medicated, is likely to result in lower scores than a second assessment when the kid is medicated. And as school goes on the kinds of things you need to test for will change. A six month delay is nothing. It sounds like you're doing okay in terms of OT and PT. What about speech? Have you looked into playgroups with the larger psychology practices?

[Anonymous]

Anonymous wrote:I don't know why you would wait for an assessment. A lot of what you describe sounds like ADHD. Even an insurance-reimbursed assessment at a hospital would be useful behavior-wise. Plus this is eating at you, which I totally understand. I did a neuropsych to rule out ID for my kid. No, he doesn't have it but he does have scores all over the place and we still have no idea what kind of prognosis we are looking at.

Here's the thing about the assessments--one eval is not going to be the final word. For a kid with ADHD even getting through the testing is hard and your first go around, if you aren't medicated, is likely to result in lower scores than a second assessment when the kid is medicated. And as school goes on the kinds of things you need to test for will change. A six month delay is nothing. It sounds like you're doing okay in terms of OT and PT. What about speech? Have you looked into playgroups with the larger psychology practices?

I get what you're saying re the one assessment. He's going to be super tough to pin down I can tell now. We do speech. He's in "normal range" but I still see issues. We do theee ties a week actually. We did one social skills group and it was useless but I think he was too young.

[Anonymous]

23:00 here again. I would keep looking for the psychology/counseling services and find some kind of play therapist if you can't get a social skills group, which in my experience is the absolute most difficult kind of therapy to organize because you have to match for schedule, the other kids and the practice. And social skills groups vary widely in quality. Were you doing one that emphasized play or were you expecting your kid to sit at a table and talk about how to be a good friend? which is what a lot of them do and why they don't work at 5 or even older for some kids. Also, while you're waiting, take Dan Shapiro's parenting class. You'll get exposed to a lot of parenting scenarios and pathologies which will help you to figure out your kid.

[Anonymous]

OP, you've been told again and again that your equation of weird behavior with cognitive delays is a false dichotomy. It's a mystery to me why you believe that your child is defiant because he has cognitive delays, or that an intelligent child would be compliant and well-behaved. This is actually an eye-roller.

A "six month" cognitive delay in a five year old found by a development pediatrician is not significant. It really isn't. It means that your child masters skills at a late five year old rather than an early five year old. SO WHAT?

The fact that you don't know of any explanations other than autism for what you label as "weird behavior" leads me to believe you know very little about child development and child psychology. Please, please, please, educate yourself. And I think you should consider that your posts are not fruitful anymore.

I have no idea why you are delaying a neuropsych for this child and then you are complaining on this board. It makes zero sense. What do you want from this board.

Stop talking about "crazy weird shit." Special needs are not crazy weird shit.

Read some books. There is a whole world of sensory issues that have nothing to do with autism.

[Anonymous]

FWIW OP- my DS10 has ADHD and deficits in social pragmatics. When he was little, he would become completely obsessed with odd things--he was the kid not interacting at birthday parties--we took him to a tiny soccer gathering and he would take off (leave the field and run to a set of stairs that he climbed up and down while the other kids played)--he had epic public meltdowns, put odd things in his mouth, etc.

His behavior became significantly more manageable between ages five and six- (which is why we put off a full neuropsych).

When we finally did a neuropsych at eight, his IQ was 145?

I'm not trying to be flip and perhaps your doctor sees more than you are describing- but my DS had many similar behaviors. When he got older, it was obvious that he had some sensory issues that had drastically improved. These things ADHD, executive functioning deficits, social impairments, sensory issues will cause some dramatic and atypical behavior in very young kids. There was a time when everything was on the table when I was trying to figure out DS's extreme behavior.

[Anonymous]

Anonymous wrote:We have been told by a couple of professionals that our son may have a cognitive delay, and I've posted about it before. It's not clear because he has severe ADHD and he had a receptive language delay which has abated. He's almost five. When he was there, the dev ped noted a possible six month cognitive delay but said it could be due to fine motor deficits. He did not qualify for child fund until 4, and they found cognitive delays, but he did not cooperate at all. He is thriving in pep, and is apparently in the top group academically, fwiw. He's good at numbers and letters. He can write his name. He is conversational. He's extremely defiant and I don't know if it's because he does not understand sometimes. He's okay on self help, can dress himself other than his shirt, toileting is good. He can ride a bike with trainers and swim. So in a lot of ways, he's doing well. but his behavior is often so odd that it makes me think he must be cognitively delayed. Socially he does things to annoy people and just weird stuff like will bite something or when at a bounce house will spend the whole time trying to climb up the slide, bite the puck for the hockey thing, just crazy weird shi$. Part of the issue is we are not going to know until we can do a neuropaych and I don't want to do one until he is 7, because he has had delays that have normalized.

Did anyone have a similar child? I'm just tired of worrying about this. I know I'm not going to know for sure for years but given that we know he's not autistic I'm not sure what other explanations there are for his weird behavior. And we have done and are doing ot and ABA and speech.

OP this is not a unmanageable issue, nor is it something that your DS cannot "overcome" (not saying cured) but overcome with therapy and yes many times, medication too. Also a cognitive delay is just a delay. It's not a permanent condition whereby he will never improve.

[Anonymous]

Whatever road lies ahead for you and your DS (and I agree with other posters that it's just too early to tease some of these things out), you need to start a self-care plan for yourself now. Really. I highly recommend therapy for *you.* And maybe even anti-anxiety medication. The level of worry that you are giving to something you can't control is completely affecting your ability to enjoy your DS and your life. (I say this because I did it as well.) You have to find a way of being ok with the unknown and a good therapist can be an essential piece of that process. My DC was born with a diagnosis that including many potential complications. I researched and agonized over every single one of them. In the end, yes, we deal with some of those issues. But most of the big ones now were not even on my radar then. And the worry took years of enjoyment away from me and didn't change a thing about the outcome.

[Anonymous]

Anonymous wrote:OP, you've been told again and again that your equation of weird behavior with cognitive delays is a false dichotomy. It's a mystery to me why you believe that your child is defiant because he has cognitive delays, or that an intelligent child would be compliant and well-behaved. This is actually an eye-roller.

A "six month" cognitive delay in a five year old found by a development pediatrician is not significant. It really isn't. It means that your child masters skills at a late five year old rather than an early five year old. SO WHAT?

The fact that you don't know of any explanations other than autism for what you label as "weird behavior" leads me to believe you know very little about child development and child psychology. Please, please, please, educate yourself. And I think you should consider that your posts are not fruitful anymore.

I have no idea why you are delaying a neuropsych for this child and then you are complaining on this board. It makes zero sense. What do you want from this board.

Stop talking about "crazy weird shit." Special needs are not crazy weird shit.

Read some books. There is a whole world of sensory issues that have nothing to do with autism.

You're being an enormous, condescending arse. You might want to consider that your knee jerk reaction to be aggressively dismissive and chastising is not fruitful to anyone. This is someone in distress. I'm sorry that makes you angry. But if you can't manage a measured reaction or just ignore, you should stay off the board.

[Anonymous]

Op here - we are "putting off" a neuropsychologist because he's currently four and we have not yet correctly medicated him for his ADHD despite several trials. We are not delaying it, rather we've been told by those that we've asked that it would nto be that helpful at this time.

[Anonymous]

I know this board is anti-Dr. Camarata but I would probably take a trip to Nashville to have him do some testing. He can do a non-verbal IQ and other testing. If he had struggles in language and you are concerned about him processing, the non-verbal tests may be better. He has a great way about him to get kids to respond. Reports are lousy but go for information only. I would also get a really good language assessment. Kids who had previous language struggles can test out, which may just mean low average, but still greatly struggle in those areas. Receptive language is one of those tricky areas to test. At 4, its hard to tell anything. He sounds like he's doing pretty well.

(Main reason some travel out there is its cheaper than private pay testing here. I think its under $1000 and some insurances cover him through Vanderbilt U. You can get a quick cheapish flight to Nashville for a day or two and hotel/car rental are reasonable.)

[Anonymous]

Any good private neuropsychologist can and will administer non-verbal IQ tests for a child with OP's son's profile. So there are options locally too.