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Best time for autism testing? Update 8/24


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Before I start, I'm likely going to get on a waitlist somewhere this year as I know it will be a while. However, I just want to get my thoughts out for other opinions/experiences :)

 

 

My son just turned 3. He received speech therapy for the last 6 months through Early Intervention Services. We have moved and are going through the process of new evals and such through the county. When I took him to his well check, he bombed his ASQ. The only area he is on track is his motor skills. There's clearly more going on than just speech, but I wonder if it is the speech holding him back so strongly as opposed to an across the board issue like autism. Our ped, after he did not pass the Brigance test, has referred him to neurology. I likely can only get this testing covered once through my insurance, and we would need an autism dx to cover any therapy. Friends have said that the county isn't likely to dx autism, even though his eval will have an OT, behaviorist, ST, and psych present. 

 

If he is autistic, it would certainly be "high functioning" for lack of a better term. He makes eye contact, and engages family in his activities. His attachment to me especially, is huge, though he never gives hugs or kisses of his own volition. He sometimes withdraws from casual touch. His speech is probably about a year behind? He only just started two word plus phrases around christmas at 2.75. No spatial references (in, on, over). His issue seems to be receptive, but it's hard to say when he just totally ignores you. His hearing, checked in a booth, came back normal. He is very physical. He climbs on us all the time. He hits, bites, scratches everyone for sometimes no reason at all it seems. I have noticed occasional stimming (rocking) and scripted speech. He doesn't sleep through the night. During tantrums he harms himself (scratching, throwing his head to the ground). 

 

So, my thoughts are that perhaps we should wait for his speech to catch up some. Go through whatever services the county offers this year and then, have a full eval for autism closer to 4.5/5. I just want it to be as accurate as possible, where language isn't making his cognitive skills appear to be lower than they are. I know it'll be more thorough, but this "look at the picture and point to the scissors" business is totally irritating :sleep: . He knows what they do, and can communicate that he wants them if need them.

 

Being a layman, I don't know how they sort these things out. I have heard that some places want you to wait until school age to dx. Is the language issue, or just a general delay the reason? I'm likely rambling now and just wondering what the next steps could look like and if I should have the private testing now. Or have some more therapy, more time, and then see where he is next year. 

 

 

Edited by Joyful Journeys
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I don't understand why you wouldn't seek an early diagnosis and then early intervention specific to autism.

 

If your insurance covers autism treatment, this sounds like the best course of action.

 

If your county won't diagnose ---- then you need to make him an appointment somewhere that he can get an accurate diagnosis.

 

I would make the appointment now.

 

Language is a part of autism, it is not like it is some separate thing from autism. I think that is a non-issue for seeing if he is diagnosed with autism.

 

For other things, I agree language is separate. But an autism diagnosis is independent of cognitive functioning (as far as I know, or to some extent).

 

So I agree that you might not get an accurate result for his cognitive level, b/c of language and non-responding.

 

But non-responding itself is something they would be looking for for an autism diagnosis (or it was where we took my son). So the non-responding itself is something they look for. It is common or routine for them to have kids who know answers but won't respond to the question when asked. They won't think he doesn't know the information, if you tell them "he does know it."

 

Autism therapy would be targeting joint attention and responding to others and things like that ----- exactly the things you are reporting problems with. It is foundational skills that help children to learn. It is worth trying to address it as soon as possible in my opinion.

Edited by Lecka
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Everything Lecka said.  Our biggest mistake with ds was not getting his ASD diagnosed earlier.  Btw, have you had someone who knows apraxia (as in a PROMPT therapist, a really good PROMPT therapist) sort out whether that "language delay" is a delay or apraxia?  Because the therapies are totally different.  Don't trust your local people.  Get a PROMPT SLP to eval his speech.  And yes, get on the waiting list for a good autism clinic or three.  Around here it's a 3-6 month wait.  You want that and you want it pronto.  Then you'll have insurance coverage to work on these things.  You've got more going on.  My ds, even as we got his speech in, has had all sorts of funkiness you wouldn't imagine.  Asking questions, classifying, emotional regulation, receptive language, prepositions, math, you name it.  Your sense that he's behind on receptive language is the tip of an iceberg.  You want all the help you can get, and you want it now, not 3 years from now.

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Your response is exactly what I needed to hear, thank you. I don't really know, aside from boxes I can check, what autism is? I mean, I had no clue therapy would target joint attention or that that was even a thing! I did the mchat and it comes back low risk so I'm unsure again. Then he starts ramming into things as he walks to the bathroom and I'm back to square one. I don't have support from my husband, it's hard trudging through this unsure of what I'm dealing with and then not have someone willing to listen. So before I start spending thousands of his hard earned money when he doesn't want to, I want to do it when it will be most accurate so insurance helps.

Edited by Joyful Journeys
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Everything Lecka said. Our biggest mistake with ds was not getting his ASD diagnosed earlier. Btw, have you had someone who knows apraxia (as in a PROMPT therapist, a really good PROMPT therapist) sort out whether that "language delay" is a delay or apraxia? Because the therapies are totally different. Don't trust your local people. Get a PROMPT SLP to eval his speech. And yes, get on the waiting list for a good autism clinic or three. Around here it's a 3-6 month wait. You want that and you want it pronto. Then you'll have insurance coverage to work on these things. You've got more going on. My ds, even as we got his speech in, has had all sorts of funkiness you wouldn't imagine. Asking questions, classifying, emotional regulation, receptive language, prepositions, math, you name it. Your sense that he's behind on receptive language is the tip of an iceberg. You want all the help you can get, and you want it now, not 3 years from now.

No I have not! And to be totally honest, the ST was a sweet older lady who had come out of retirement to do speech part time. She didn't "deal" with autistic children, hand picking her clients, and told me that there is no way he is autistic, he is "so social!" So she was happy to work with him. She did nothing I don't already do with him, scaffolding his speech, working in turn taking etc. If it wasn't free, I would have canceled it completely.

 

I need to read on PROMPT and apraxia, I don't know what those are completely. I see him searching for the words trying to tell me something and I have no idea how to help. So then if it is something like that, the county folks might not even be versed enough to help as I've seen at our last place. Sigh.

Edited by Joyful Journeys
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I have heard that some places require an ASD diagnosis before a certain age in order to qualify for services. I can't remember the specifics because my DD received a diagnosis shortly before her 3rd birthday so it was well below whatever the cutoff was. But I remember being surprised and angry for the late-diagnosed kids who could not secure the services they need.

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She didn't "deal" with autistic children, hand picking her clients, and told me that there is no way he is autistic, he is "so social!"

 

I thought my DD was "too social" to have ASD and it literally took 4 different evaluators (developmental pediatrician, school district IEP team, Regional Center psychologist, and pediatric neurologist) all confirming the diagnosis of HFA for me to accept it.

 

It was actually good that I was forced to get all those different evals (every place wanted their own) because we just switched health insurers at the beginning of the year & our new one required a full review of my DD's eligibility for continued Applied Behavioral Analysis funding. I had a big paper trail demonstrating that she had symptoms consistent with an autism diagnosis back when her hearing was within the typical range. ABA is mandated for autism but not hearing loss (though I think a lot of deaf & hard-of-hearing kids without ASD would benefit tremendously from ABA since it systematically teaches language).

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http://www.amazon.com/Early-Start-Your-Child-Autism/dp/160918470X/ref=sr_1_2?s=books&ie=UTF8&qid=1460129386&sr=1-2&keywords=early+start+denver+model

 

This is a book I think is good, it is written for the age group of toddler/pre-school and has ideas for people who are on a waiting list for an assessment (which I think you need to go ahead and get on).

 

For my situation, I got a referral through my pediatrician. That is the way my insurance works.

 

If you have heard from someone that your local EI is unlikely to diagnose (which unfortunately may be a real thing, otoh maybe you are hearing gossip ---- it could really be either way) ------ then can you ask what place is good to get on the list?

 

And, if you need "autism" for insurance, does that mean there is some eval that your insurance might cover?

 

The M-Chat..... my son was lower on that for a while, but then it changed.

 

But for myself ---- my son did GREAT with me. Really, really great. And when he was 3, I didn't expect him to interact with other people, when he did interact with me. A lot of things I called "acting shy" or "being a mommy's boy" which I think are really fine things for a 3-year-old.

 

But if he had been in more experiences, he would have had more signs, but I kept him in situations where he would do well (and I kept him with me).

 

So you do have to look at if he is starting to do any worse, and if he is good with other people as he is with you.

 

I also had a problem with EI, that they only saw him with me. If they had seen him in other situations, some things would have been more obvious. But I only took him to church and the gym nursery at that time (and I didn't sign him up for Mother's Day Out that year, b/c I knew he wasn't separating well from me or doing well there, so I just skipped it). (That would not be true for everyone -- but it was my situation.)

 

But yeah ---- my son did very, very well with me. It doesn't mean that he doesn't have autism.

 

I think -- if you have some reason to be thinking along these lines, look into it a little more. If you go in, you need to take in information, and be assertive, and share honest information.

 

It is very, very tempting to underplay certain things, not bring up certain things, and then feel like "well, the doctor thinks things are fine." But if the doctor is seeing how he does with you ----- it is just not an accurate representation sometimes, of how he does with other people, or in other situations that may be more difficult for him.

 

The language delay and the non-responding to things that you know he knows ----- these are red flags, whether they are on the M-Chat or not.

 

Now ----- maybe it is just a language delay!!!!!! However ------ thinking "maybe it is just a language delay" just is not a good reason to pass by autism testing. It just is not.

 

Now ----- you could get that result, it is very, very possible.

 

But if you find out "oh, his joint attention could be improved, we could practice techniques to help him respond to others and interact with others" then ---- there is so much learning that comes from these things, and you are letting time pass with your child less able to engage than he might be if he had these skills. And this engagement is where so much learning comes from with little kids.

 

Also for his language ----- language improves when kids can use language to interact and communicate with others, and when they are motivated to do this, and it is not too hard.

 

If he can better notice what other people are looking at, this will help his language.

 

It is worth doing.

 

I do think the book I linked has good ideas!!!!!!!

 

But I do think -- do what you can to look into testing.

 

If you know there is a waiting list, too, you can always cancel!!!!!!!

 

But go ahead and get on the list now, and if he has a language burst and improves in other ways and you don't need to worry about it anymore, it is no problem, you can just cancel the appointment! It is really fine.

 

But honestly I waited until things did get worse and/or things did get more noticeable, and then I was very sorry to have to wait months and months. I really wish I had at least gotten on the waiting list when I first kind-of knew that something was wrong.

 

And if you turn out to cancel, then nothing is lost.

 

Yes, it is some wasted time, that it takes to figure out where to go and fill out some paperwork.

 

But you are worrying already -- you are -- so it would not save you any worry.

 

If anything, you could find out that there is something that is less of a worry!

 

So I think -- since you are already worried, and maybe having some behavior issues that may be on the difficult side to handle, go ahead and start the process.

 

Honestly, too, this is a good thing to do. There are things that can help!

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Yes, things are getting worse. We have good days and not so good days. Today is not so good, lots of throwing and hitting and frustration. The biggest thing now is how he interacts with his siblings. He's just relentless with bothering them to the point of injury, in part Im sure due to his inability to play with them. I thought that as his language improved so would the behavior, but it seems the opposite. That perhaps he's developing on track in some areas yet the lack of language has only frustrated him more.

 

If my husband were on board this would all be a non issue. I'd totally skip the county and go private, like yesterday. It is super hard around here. He keeps it together in public so much that you'd think nothing was wrong. He is never around lots of age mates so he hasn't been forced to deal. But the burden of proof is on me to go through these free resources first to figure out where he stands. He only sees about 20 % of his issues since he works so much, and what he does see he sort of chalks up to language and being an ornery 3 yr old.

 

I've only looked into speech services and that requires austim dx first. I need to make some more calls about the actual eval coverage but I know we have a high deductible too.

 

I will get the book, it looks great, thanks!

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I really didn't know what to do when DS12 was two and three. He was in early intervention for speech delay and was also diagnosed through EI with sensory processing disorder. They noticed his odd and perserverative behaviors and the difficulty of getting him to engage in the play therapy, but not one person said to me that they suspected autism. I did a lot of online reading, but because he had SPD and probable ADHD (not diagnosed until age 9, but I always thought he had it), it was confusing -- there were a lot of crossover symptoms among the diagnoses he already had, and he didn't seem to have the whole list of autism symptoms. He fit better in the Asperger's category (I thought), but he had speech delay, which didn't really correspond to that diagnosis. He had good eye contact. No one else seemed to think he had autism. Over the years, multiple people told us that they thought he did NOT have autism, and we didn't know how to actually sort things out that we were seeing. It was so confusing. I kept trying to sort it out in my mind.

 

Now he is older, and he has a diagnosis of NVLD (not autism yet, but he still has not had a complete screening just for the autism issue). I'm still left wondering. Every child is different, but I do think that it would have been easier to diagnose him with autism when he was three than it would be to diagnose him now. If I could go back in time, I would get him screened as a toddler.

 

If you google "autism DSM5" you will be able to see for yourself the diagnostic criteria. If you decide to have him evaluated, I would go through the criteria yourself and take notes listing everything he has done in the past or does now that is even slightly related to any of those categories. That way when you go into the intake meeting, you will be able to elaborate on all the symptoms that you see. Make sure that you give them the full picture of what he is like at home with you, because he may not show all of those traits in the sessions with the evaluators. To include it in their data, they have to know that the problems are there.

 

I don't know if it would be better to wait another year, until he is four. If you think you can get good therapy for him between now and then that will address his needs, I don't think it is a terrible thing to wait for just a little bit. On the other hand, the sooner you get targeted help, the better. So I can see it either way. But I'd get him on the waiting list before age four, so that too much time doesn't go by. And I would be sure to save all of the evaluations and reports that you have received so far from EI and doctors, because one of the diagnostic criteria is that symptoms were present in the early developmental period.

 

I know you want to make sure you get the screening done at the optimal time, so that you only have to do it once. The tricky thing is that a lot of kids like ours end up having multiple kinds of evaluations over time, during different years, as they grow and things change over time. For you, I think they key would be to really research the places that do autism screening, make sure you go somewhere that will be thorough and give him speech and OT testing, etc. as well as part of their process. We found one place that agreed to screen DS12 for us, but would only run one test, because they considered it the "gold standard." We rejected that as not thorough enough.

 

It's hard to sort these things out. I wish you the best!

Edited by Storygirl
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This is where the wait list time works in your favor.  You get on the wait list while you go through the EI and talk to your husband, and you can always cancel. 

 

I also think ---- don't frame things as "here are things wrong with our son."  It sets you up as the fault finder, and it is very easy to say "no, no, you are over-reacting."  Plus mentally you do not need to be in a position of fault-finding about one of your kids to convince your husband there is something wrong.  It just is not setting things up very well.

 

If you set things up as "I need help" that is a lot harder to pick at.  It can put your husband on your side in wanting to help you, and then you are more working together.  Or, you could say it would make you feel better.  Then he might want you to feel better.  And also keep in mind for him -- you could find out you were worrying over nothing, and that could be something your husband would want you to find out.  (But make sure you go somewhere good and take in information!) 

 

You could also set things up as -- you are not so satisfied with the EI, and you are just not comfortable with it, and you at least want to get on the waiting lists. 

 

Then -- if the waiting lists are long, it could be months before you need to bring it up again. 

 

You also DO want your husband to be on your son's side, that is good.  Try to work with that, though, and not against it. 

 

I also think, maybe look to other sources of support besides your husband, if he is not seeing things you are seeing right now.  Trying to make him see things he is not seeing, is not really productive.  But I would hope you might be able to present this is in a way that would be easier for your husband, and that is also true.  Mentally, it is a situation like when you hear:  don't criticize a teenager's boyfriend/girlfriend, b/c you put them in the situation of defending the boyfriend/girlfriend, and it can make them more likely to take the side of the boyfriend/girlfriend and not see things that are issues.  If you can be patient on some things, then you can be on the same page sooner, maybe, in the medium term (if not the short term).

 

It is not the kind of marriage relationship I thought I would have, I thought we would be more on the same page immediately, but it has turned out to be like this with a few things here and there, especially when one of us is just not seeing things as soon as the other person.     

 

And I don't at all mean lying, but maybe more like creating a space where you do not totally agree or see the same things, but it is okay for that space to exist, and you can let that space be there while your son is on some waiting lists. 

 

Then -- you can talk about it more when the actual date gets closer.

 

I am just pretty strongly in favor of going ahead and getting on a list, in case the list is long, and then in case there is another list for a provider..... b/c it can get to taking a long time, if there are lists for every little thing! 

 

Can you tell I had a long waiting list, and then I got a huge shock when I then had a new waiting list for a provider?  I ended up having my first ABA provider appointment about 2 months after the diagnosis, but it could have been longer!  And that was a long, long 2 months. 

 

But your husband does not have to see what you see now, or have the same sense of urgency, etc., to just agree to a wait list, if you will agree that you will honestly consider cancelling the appointments as they get closer.  It is just a thought, if that is something that might work out for your husband and for you. 

 

Edit:  This could be different if your long waiting lists are not as long as here.... here I had an 8-month waiting list, and then we got in earlier with a cancellation.  That is a LONG waiting list. 

 

If it is 2-3 months ----- then I think time is not so much of the essence, you can take a little time to look into it more and share information with your husband. 

 

But if long means 8 months ----- just get on the list, is my feeling.  If things seem different in 6 months ---- it will be easy to cancel. 

Edited by Lecka
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I thought my DD was "too social" to have ASD and it literally took 4 different evaluators (developmental pediatrician, school district IEP team, Regional Center psychologist, and pediatric neurologist) all confirming the diagnosis of HFA for me to accept it.

 

It was actually good that I was forced to get all those different evals (every place wanted their own) because we just switched health insurers at the beginning of the year & our new one required a full review of my DD's eligibility for continued Applied Behavioral Analysis funding. I had a big paper trail demonstrating that she had symptoms consistent with an autism diagnosis back when her hearing was within the typical range. ABA is mandated for autism but not hearing loss (though I think a lot of deaf & hard-of-hearing kids without ASD would benefit tremendously from ABA since it systematically teaches language).

I'm in a weird space, where I just might do the same thing. Not intentionally, but it is a big pill to swallow. I know it's not some horrible thing, but just so unexpected to even be having this discussion. I need to read up on ABA and what all it involves.

 

 

 

I can't multiquote but Lecka, thank you, yes that's kind of where we are.

 

I'm trying to give my husband the benefit of the doubt. He likely thinks I'm a maniac because I have my 6 and 8 yr old being evaluated by the schools too. All of a sudden, in the last 6 months, something is "wrong" with all of them. Crazy! I would not be surprised if between the three of them after all is said and done we have a mix of ADHD, CAPD, dyslexia and SPD. My oldest needs vision therapy too! Throw in autism and I'm barely keeping it together. He just seems to be sticking his head in the sand, rather than getting on board with a solution. He'll get there, meanwhile I'll carry on.

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I've only looked into speech services and that requires austim dx first. I need to make some more calls about the actual eval coverage but I know we have a high deductible too.

 

In my state, clients of the Regional Center qualify for Medicaid to wrap-around private insurance. Medi-Cal picks up the deductible and co-pays for my DD's healthcare & therapy as long as the provider accepts Medi-Cal (so far that's been everyone except the speech & language pathologist at the clinic for the deaf & hard-of-hearing).

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I really didn't know what to do when DS12 was two and three. He was in early intervention for speech delay and was also diagnosed through EI with sensory processing disorder. They noticed his odd and perserverative behaviors and the difficulty of getting him to engage in the play therapy, but not one person said to me that they suspected autism. I did a lot of online reading, but because he had SPD and probable ADHD (not diagnosed until age 9, but I always thought he had it), it was confusing -- there were a lot of crossover symptoms among the diagnoses he already had, and he didn't seem to have the whole list of autism symptoms. He fit better in the Asperger's category (I thought), but he had speech delay, which didn't really correspond to that diagnosis. He had good eye contact. No one else seemed to think he had autism. Over the years, multiple people told us that they thought he did NOT have autism, and we didn't know how to actually sort things out that we were seeing. It was so confusing. I kept trying to sort it out in my mind.

 

Now he is older, and he has a diagnosis of NVLD (not autism yet, but he still has not had a complete screening just for the autism issue). I'm still left wondering. Every child is different, but I do think that it would have been easier to diagnose him with autism when he was three than it would be to diagnose him now. If I could go back in time, I would get him screened as a toddler.

 

If you google "autism DSM5" you will be able to see for yourself the diagnostic criteria. If you decide to have him evaluated, I would go through the criteria yourself and take notes listing everything he has done in the past or does now that is even slightly related to any of those categories. That way when you go into the intake meeting, you will be able to elaborate on all the symptoms that you see. Make sure that you give them the full picture of what he is like at home with you, because he may not show all of those traits in the sessions with the evaluators. To include it in their data, they have to know that the problems are there.

 

I don't know if it would be better to wait another year, until he is four. If you think you can get good therapy for him between now and then that will address his needs, I don't think it is a terrible thing to wait for just a little bit. On the other hand, the sooner you get targeted help, the better. So I can see it either way. But I'd get him on the waiting list before age four, so that too much time doesn't go by. And I would be sure to save all of the evaluations and reports that you have received so far from EI and doctors, because one of the diagnostic criteria is that symptoms were present in the early developmental period.

 

I know you want to make sure you get the screening done at the optimal time, so that you only have to do it once. The tricky thing is that a lot of kids like ours end up having multiple kinds of evaluations over time, during different years, as they grow and things change over time. For you, I think they key would be to really research the places that do autism screening, make sure you go somewhere that will be thorough and give him speech and OT testing, etc. as well as part of their process. We found one place that agreed to screen DS12 for us, but would only run one test, because they considered it the "gold standard." We rejected that as not thorough enough.

 

It's hard to sort these things out. I wish you the best!

Goodness how frustrating! I think that's part of my thinking too, that I want to avoid going from doc to doc getting little bits here and there. I hope for a truly thorough evaluation to just affirm or deny whatever it is or isn't. But from what everyone has said, waiting doesn't guarantee that at all.

 

Thank you everyone for your posts! I value the input immensely, I have been reading lots of old threads and the wealth of information you share is incredible.

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Wow, this thread got so loaded, I'm going to have to take some of this back channel, mercy.  I'll just say you're NOT crazy.  It IS overwhelming to realize that you've got some genes going on, and yes it will express like that, coming up as ADHD in some kids, pushing a little more and a little more, crossing over to levels of ASD and more severe ASD.  You're not crazy.  

 

I assume you also let your SLP be your midwife, because she likes babies, right?  Because that's about how qualified your SLP is to diagnose (or say it's not) autism.  Just saying.  Don't even get me started, because I could heat up a keyboard real fast on the SLPs we've been with who were happy to have an INCORRECT opinion on whether my ds had autism.

 

See the issue is that they're only seeing him one way, in one setting.  They get him in there, with high structure, the same routine every time, and they're like so WHAT are you so stinking worried about?  And yes, he's getting therapy, and the language kicks in.  Then you realize my lands he'll use that language with adults (adults do therapy) but can't do it with kids!!!  Is she seeing him interact with kids?  No.  Only one setting, and he's doing what she trained him to, big shock.  And the therapists get attached.  And the therapists aren't qualified to diagnose ASD.  

 

He's going to be the same precious boy before and after, but delaying a full eval delays your access to high quality interventions that alter the trajectory.  You can read about apraxia and its major symptoms and see if he has them.  It's definitely a question to ask.

 

Deep breath.  I think if you go to a clinic that focuses on ASD and get a multi-factored eval (OT, SLP, psych, etc.), you're going to get pretty good answers.  

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I'm in a weird space, where I just might do the same thing. Not intentionally, but it is a big pill to swallow. I know it's not some horrible thing, but just so unexpected to even be having this discussion. I need to read up on ABA and what all it involves.

 

I'm trying to give my husband the benefit of the doubt. He likely thinks I'm a maniac because I have my 6 and 8 yr old being evaluated by the schools too. All of a sudden, in the last 6 months, something is "wrong" with all of them. Crazy! I would not be surprised if between the three of them after all is said and done we have a mix of ADHD, CAPD, dyslexia and SPD. My oldest needs vision therapy too! Throw in autism and I'm barely keeping it together. He just seems to be sticking his head in the sand, rather than getting on board with a solution. He'll get there, meanwhile I'll carry on.

 

My son with ASD did not flag on the M-CHAT really either. Interracting with others was very different though. I suspect if someone else had filled it out (nursery worker, etc.) it might have looked different. Lecka is really on about the differences when the child is with someone else.

 

So many times multiple issues run together in families, and once you've learned to look closer, you see more. It's okay. BTW, our most valuable therapy was VT, hands down, for both of our kids (though if we'd had a diagnosis to get ABA when my ASD son was little and PROMPT when my apraxia kid was little, those would probably win out). VT was life-changing and made the other therapies work so much better (VT did retained reflex work as part of the package)!!! OT, swimming, specific exercise, etc. could not get my little able to complete a sit up of any kind (modified, etc.). A few weeks of VT during a relatively inactive spell for him physically, and he has core stability now. He's able to do a sit up of some kind for the first time ever. 

 

I encourage you to really look into PROMPT. Our son with apraxia was screened 2.5 years ago by a traditional SLP who specialized in apraxia, publishes papers and the whole bit. She cleared my son and told us to just speak more slowly. He actually lost letter sounds after we saw her. We had him re-evaluated last fall with a PROMPT therapist, and he not only has speech motor problems, he has oral motor problems (basically, the child has global motor problems but not enough to get a label for that--if it says "motor" in the name, he has deficits with it). Anyway, the PROMPT therapist took his case history, did the screening, and she got really quiet because she was super, super angry (at the establishment, not us) that he had not been identified as an INFANT for the oral motor problems and a toddler for apraxia. She was able to show us how unstable his jaw was, how little food he was actually able to chew (he would chew and chew, and he was still swallowing food whole, but we assumed all that chewing was working for him). So yeah, see a PROMPT therapist! If you are seeing other motor problems, I would be wanting a PROMPT person to see him.

 

Hang in there! You will figure this out.

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This is where the wait list time works in your favor.  You get on the wait list while you go through the EI and talk to your husband, and you can always cancel. 

 

I also think ---- don't frame things as "here are things wrong with our son."  It sets you up as the fault finder, and it is very easy to say "no, no, you are over-reacting."  Plus mentally you do not need to be in a position of fault-finding about one of your kids to convince your husband there is something wrong.  It just is not setting things up very well.

 

If you set things up as "I need help" that is a lot harder to pick at.  It can put your husband on your side in wanting to help you, and then you are more working together.  Or, you could say it would make you feel better.  Then he might want you to feel better.  And also keep in mind for him -- you could find out you were worrying over nothing, and that could be something your husband would want you to find out.  (But make sure you go somewhere good and take in information!) 

 

You could also set things up as -- you are not so satisfied with the EI, and you are just not comfortable with it, and you at least want to get on the waiting lists. 

 

Then -- if the waiting lists are long, it could be months before you need to bring it up again. 

 

You also DO want your husband to be on your son's side, that is good.  Try to work with that, though, and not against it. 

 

I also think, maybe look to other sources of support besides your husband, if he is not seeing things you are seeing right now.  Trying to make him see things he is not seeing, is not really productive.  But I would hope you might be able to present this is in a way that would be easier for your husband, and that is also true.  Mentally, it is a situation like when you hear:  don't criticize a teenager's boyfriend/girlfriend, b/c you put them in the situation of defending the boyfriend/girlfriend, and it can make them more likely to take the side of the boyfriend/girlfriend and not see things that are issues.  If you can be patient on some things, then you can be on the same page sooner, maybe, in the medium term (if not the short term).

 

It is not the kind of marriage relationship I thought I would have, I thought we would be more on the same page immediately, but it has turned out to be like this with a few things here and there, especially when one of us is just not seeing things as soon as the other person.     

 

And I don't at all mean lying, but maybe more like creating a space where you do not totally agree or see the same things, but it is okay for that space to exist, and you can let that space be there while your son is on some waiting lists. 

 

Then -- you can talk about it more when the actual date gets closer.

 

I am just pretty strongly in favor of going ahead and getting on a list, in case the list is long, and then in case there is another list for a provider..... b/c it can get to taking a long time, if there are lists for every little thing! 

 

Can you tell I had a long waiting list, and then I got a huge shock when I then had a new waiting list for a provider?  I ended up having my first ABA provider appointment about 2 months after the diagnosis, but it could have been longer!  And that was a long, long 2 months. 

 

But your husband does not have to see what you see now, or have the same sense of urgency, etc., to just agree to a wait list, if you will agree that you will honestly consider cancelling the appointments as they get closer.  It is just a thought, if that is something that might work out for your husband and for you. 

 

Edit:  This could be different if your long waiting lists are not as long as here.... here I had an 8-month waiting list, and then we got in earlier with a cancellation.  That is a LONG waiting list. 

 

If it is 2-3 months ----- then I think time is not so much of the essence, you can take a little time to look into it more and share information with your husband. 

 

But if long means 8 months ----- just get on the list, is my feeling.  If things seem different in 6 months ---- it will be easy to cancel. 

 

Now that I'm at a pc, I can answer better. This is amazing advice. Wow. Thank you, he gets immediately defensive, yes. I even have to stop myself in a way from just literally staring at the boy all day long waiting for him to do something? I feel like there's so much pressure on me to be able to give a complete picture of him, and with my attention diverted to three other kids, one of them only 8 months, it's just an exercise in futility sometimes. I think the lists are around 3-6 months here, with some of the bigger university clinics 6+. 

 

 

Wow, this thread got so loaded, I'm going to have to take some of this back channel, mercy.  I'll just say you're NOT crazy.  It IS overwhelming to realize that you've got some genes going on, and yes it will express like that, coming up as ADHD in some kids, pushing a little more and a little more, crossing over to levels of ASD and more severe ASD.  You're not crazy.  

 

I assume you also let your SLP be your midwife, because she likes babies, right?  Because that's about how qualified your SLP is to diagnose (or say it's not) autism.  Just saying.  Don't even get me started, because I could heat up a keyboard real fast on the SLPs we've been with who were happy to have an INCORRECT opinion on whether my ds had autism.

 

See the issue is that they're only seeing him one way, in one setting.  They get him in there, with high structure, the same routine every time, and they're like so WHAT are you so stinking worried about?  And yes, he's getting therapy, and the language kicks in.  Then you realize my lands he'll use that language with adults (adults do therapy) but can't do it with kids!!!  Is she seeing him interact with kids?  No.  Only one setting, and he's doing what she trained him to, big shock.  And the therapists get attached.  And the therapists aren't qualified to diagnose ASD.  

 

He's going to be the same precious boy before and after, but delaying a full eval delays your access to high quality interventions that alter the trajectory.  You can read about apraxia and its major symptoms and see if he has them.  It's definitely a question to ask.

 

Deep breath.  I think if you go to a clinic that focuses on ASD and get a multi-factored eval (OT, SLP, psych, etc.), you're going to get pretty good answers.  

 

Yes! I wrote that advice off pretty quickly. He threw something at her about 4 months in, and I was :blushing: thinking she just got her first taste of his usual self. She got him first thing in the morning, right out of bed, for only 30 minutes. Of course, he was great for you. She gave me a handout on time outs...bless her heart  :laugh:

 

I'm looking at apraxia symptoms and they don't seem to describe him. He articulates quite well the words he can say. He does choke when he drinks from a regular cup, we are still firmly in sippy cup land because he can't manage the flow,  but not with food. Still, I hope this his next eval is much more thorough than just having him point at pictures, which is truly all he has done so far. 

 

My son with ASD did not flag on the M-CHAT really either. Interracting with others was very different though. I suspect if someone else had filled it out (nursery worker, etc.) it might have looked different. Lecka is really on about the differences when the child is with someone else.

 

So many times multiple issues run together in families, and once you've learned to look closer, you see more. It's okay. BTW, our most valuable therapy was VT, hands down, for both of our kids (though if we'd had a diagnosis to get ABA when my ASD son was little and PROMPT when my apraxia kid was little, those would probably win out). VT was life-changing and made the other therapies work so much better (VT did retained reflex work as part of the package)!!! OT, swimming, specific exercise, etc. could not get my little able to complete a sit up of any kind (modified, etc.). A few weeks of VT during a relatively inactive spell for him physically, and he has core stability now. He's able to do a sit up of some kind for the first time ever. 

 

I encourage you to really look into PROMPT. Our son with apraxia was screened 2.5 years ago by a traditional SLP who specialized in apraxia, publishes papers and the whole bit. She cleared my son and told us to just speak more slowly. He actually lost letter sounds after we saw her. We had him re-evaluated last fall with a PROMPT therapist, and he not only has speech motor problems, he has oral motor problems (basically, the child has global motor problems but not enough to get a label for that--if it says "motor" in the name, he has deficits with it). Anyway, the PROMPT therapist took his case history, did the screening, and she got really quiet because she was super, super angry (at the establishment, not us) that he had not been identified as an INFANT for the oral motor problems and a toddler for apraxia. She was able to show us how unstable his jaw was, how little food he was actually able to chew (he would chew and chew, and he was still swallowing food whole, but we assumed all that chewing was working for him). So yeah, see a PROMPT therapist! If you are seeing other motor problems, I would be wanting a PROMPT person to see him.

 

Hang in there! You will figure this out.

 

Yes, we can't wait to get started with VT. I'm getting one more opinion for her as our first two were so drastically different in approach (and cost!) so we are just doing our due diligence. Perhaps this one we're seeing in a couple weeks does the reflex work too. 

 

As far as with others, I watched him at my oldest's dance class last night and he does great with older kids in a novel setting, for a short amount of time, with me there (that enough qualifiers?  :lol: ). One boy, age 9, always plays with him, but he clearly knows to compensate for my son's lack of understanding. It's limited to just chasing back and forth or tossing a ball. He will only engage in pretend play with me (offering me play food or making sticks into a plane etc). His cousin is a little over 2 and together they do the whole parallel play deal, mostly fighting with each other over things. He doesn't talk to him at all other than "hey, mine!" I had hoped that the county would place him in a half day pre k to receive services and play experiences, but maybe he's not ready? I can't even imagine how he'll separate from me, he's never had to besides with family. 

 

His motor skills are quite good, I think. He is a daredevil and attempts things at playgrounds his 6 yr old sister won't! He manipulates toys well too.

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Even if the person is PROMPT trained, there are levels.  That choking when drinking would be concerning to me.  The PROMPT level 1 training is inadequate, UTTERLY INADEQUATE for someone to say they know PROMPT.  I've read the level 1 manual and done the PROMPT our SLP has taught me.  You want me diagnosing your kid?  Nope.  Minimum level 2 and someone working on getting certified.  They need to be showing their commitment to the field and to getting experienced enough to understand what they're seeing.  As Kbutton says, there's nothing more DISGUSTING than wasting years being told it's not and then realizing it is.

 

Btw, different kids with apraxia present different ways.  Some will get speech but have issues with the motor planning and intelligibility.  Others may never acquire speech or have very limited speech.  There's just a range.  Do not assume.  They need to do the VMPAC and they need to be experienced enough (advanced training or certified) or being supervised by someone who has that training level so they can review the results.  Our lead SLP is a PROMPT instructor and has been training some people.  They video the VMPAC and then go over it together.  It takes several hours to work through a VMPAC and score it.  

 

Kbutton, your ds is still little.  Doesn't feel that way, but he is.  :)  And 7 is not too late.  Teens, yeah that's rough.  But your ds also has speech, which is good!  She'll be able to get you progress.  Ask what you can do at home.  Working with homeschoolers is different, because homeschoolers come in saying hey give me something to do 10 minutes a day and we'll do it!  So for that oral tone, has she given you homework?  Even just chewing gum, whistles, twisty straws...  Actually, you know what was the bees' knees for my ds' oral tone?  Swimming.  Not really oral tone, more like breath support.  Blew that off the charts.  He used to sound like Mickey Mouse, and after a summer of swimming that was radically better.  But his face slimmed down too from all that work with opening his mouth, taking the breath, raising his jaw.  We had to practice the way to take the breath so he wasn't just doing it random ways.  She worked him to where he has specific mouth movements to use, not just like WHOOSH and huge mouth open.  So you might be able to find lifestyle ways like that to work on skills too.  :)

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I thought you mentioned somewhere in here that he has poor motor skills. Oops.

 

No worries!!  :grouphug:

 

Even if the person is PROMPT trained, there are levels.  That choking when drinking would be concerning to me.  The PROMPT level 1 training is inadequate, UTTERLY INADEQUATE for someone to say they know PROMPT.  I've read the level 1 manual and done the PROMPT our SLP has taught me.  You want me diagnosing your kid?  Nope.  Minimum level 2 and someone working on getting certified.  They need to be showing their commitment to the field and to getting experienced enough to understand what they're seeing.  As Kbutton says, there's nothing more DISGUSTING than wasting years being told it's not and then realizing it is.

 

Btw, different kids with apraxia present different ways.  Some will get speech but have issues with the motor planning and intelligibility.  Others may never acquire speech or have very limited speech.  There's just a range.  Do not assume.  They need to do the VMPAC and they need to be experienced enough (advanced training or certified) or being supervised by someone who has that training level so they can review the results.  Our lead SLP is a PROMPT instructor and has been training some people.  They video the VMPAC and then go over it together.  It takes several hours to work through a VMPAC and score it.  

 

Kbutton, your ds is still little.  Doesn't feel that way, but he is.   :)  And 7 is not too late.  Teens, yeah that's rough.  But your ds also has speech, which is good!  She'll be able to get you progress.  Ask what you can do at home.  Working with homeschoolers is different, because homeschoolers come in saying hey give me something to do 10 minutes a day and we'll do it!  So for that oral tone, has she given you homework?  Even just chewing gum, whistles, twisty straws...  Actually, you know what was the bees' knees for my ds' oral tone?  Swimming.  Not really oral tone, more like breath support.  Blew that off the charts.  He used to sound like Mickey Mouse, and after a summer of swimming that was radically better.  But his face slimmed down too from all that work with opening his mouth, taking the breath, raising his jaw.  We had to practice the way to take the breath so he wasn't just doing it random ways.  She worked him to where he has specific mouth movements to use, not just like WHOOSH and huge mouth open.  So you might be able to find lifestyle ways like that to work on skills too.   :)

 

See, me too! I brought it up with the SLP we had and she just said use little dixie cups with water so he can practice. Well, ok  :huh:  He'll choke on a smaller amount then and the cup is way lighter so he goes even faster sloshing it down his shirt. 

 

Eta: I found someone thats right down the road and in our network that has completed intro & bridging courses in PROMPT, is that level 2?

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Kbutton, your ds is still little.  Doesn't feel that way, but he is.   :)  And 7 is not too late.  Teens, yeah that's rough.  But your ds also has speech, which is good!  She'll be able to get you progress.  Ask what you can do at home.  Working with homeschoolers is different, because homeschoolers come in saying hey give me something to do 10 minutes a day and we'll do it!  So for that oral tone, has she given you homework?  Even just chewing gum, whistles, twisty straws...  Actually, you know what was the bees' knees for my ds' oral tone?  Swimming.  Not really oral tone, more like breath support.  Blew that off the charts.  He used to sound like Mickey Mouse, and after a summer of swimming that was radically better.  But his face slimmed down too from all that work with opening his mouth, taking the breath, raising his jaw.  We had to practice the way to take the breath so he wasn't just doing it random ways.  She worked him to where he has specific mouth movements to use, not just like WHOOSH and huge mouth open.  So you might be able to find lifestyle ways like that to work on skills too.   :)

 

He is getting homework. Breath support is not an issue for us. I am not sure what we'll be doing for oral motor, but we do have special straws. For the speech portion, jaw control is a biggie and then jaw control while moving lips properly, etc. But, it appears to mostly all be bound up in the jaw control so far. He doesn't have much stability in his lower jaw.

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  I brought it up with the SLP we had and she just said use little dixie cups with water so he can practice. Well, ok  :huh:  He'll choke on a smaller amount then and the cup is way lighter so he goes even faster sloshing it down his shirt. 

 

I'm only halfway done with the Communicative Disorders 2nd bachelor's and even I know this is wrong. :thumbdown:  I haven't done the dysphagia (swallowing disorders) training yet so I don't know what exactly the SLP should be doing for your child, but it's more than just practicing with small quantities. That can actually be risky because if the individual aspirates the liquid into his/her lungs, it could result in developing pneumonia. :ohmy:

 

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I'm only halfway done with the Communicative Disorders 2nd bachelor's and even I know this is wrong. :thumbdown: I haven't done the dysphagia (swallowing disorders) training yet so I don't know what exactly the SLP should be doing for your child, but it's more than just practicing with small quantities. That can actually be risky because if the individual aspirates the liquid into his/her lungs, it could result in developing pneumonia. :ohmy:

 

Ugh! So far I've just limited him to sippies or straws which he does ok with. I only try if I can be right there watching, and he has success if I hold the cup myself, if he'll let me. I wonder at what point it's a bigger issue? I don't know if it's within the range of normal, just later end..? I think at 4 in prek they all had communal snack with regular cup, so certainly by then he needs to have this down.

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No worries!!  :grouphug:

 

 

See, me too! I brought it up with the SLP we had and she just said use little dixie cups with water so he can practice. Well, ok  :huh:  He'll choke on a smaller amount then and the cup is way lighter so he goes even faster sloshing it down his shirt. 

 

Eta: I found someone thats right down the road and in our network that has completed intro & bridging courses in PROMPT, is that level 2?

Yes, see people don't like it when we come on here and question their SLP.  But what good does it do you if we pat your back and say oh yes your sweet SLP that you pay $100 an hour to who is so sweet is going to get it done...  It doesn't.  With serious motor planning problems, you need the best interventions.  PROMPT.  Certified is ideal.  Remember, these practitioners have to do CEUs every year, so they go to a workshop for level 1, say check, thank you, and that's it.  The PROMPT institute drops these people after about 3 years I think because they just aren't committed to learning the methodology and aren't qualified to take a dc through completely.  Or, as our first SLP put it, she THOUGHT she knew PROMPT after level 1.   ;)

 

So yes, Intro is the first course, then Advanced and then Bridging, yes?  I forget.  You can look it up on their site.  What *I* would be looking for is someone making a commitment to pure PROMPT, someone who is getting the training.  If they've done level one but they're scheduled for the next course and planning to get certified, that's awesome.  If they've done the advanced/bridging and are hoping to get certified at some point (which obviously takes a lot of hours), then yes that's fine.  But if they're just like oh I took that CEU, spit spit, I "know" it, blah blah, I'd keep looking.  The unqualified and the qualified cost the same around here, so choose the qualified, kwim?  I know that's not always true with insurance, sigh.  I'm just saying in general that's the case.  

 

There are even some bum deal certifieds who just aren't the right personality or whatever.  So use your head, call around, see your options.  When I started with ds almost 6 years ago (wow time flies!), my options were level 1 one hour away or certified 2 hours away.  Same price, and either way a long drive.  I decided to drive the 2 hours and have NEVER regretted it.  So just look at the options and make your best decision.  Now our person is an instructor and has trained TONS of therapists around the state.  Now I can get level 2 trained within an hour.  They just don't have enough experience to keep up with my ds.  And frankly, the need is SO great that they don't even have openings.  So we're still driving 2 hours.  Sigh.  I know people driving even further.  

 

He is getting homework. Breath support is not an issue for us. I am not sure what we'll be doing for oral motor, but we do have special straws. For the speech portion, jaw control is a biggie and then jaw control while moving lips properly, etc. But, it appears to mostly all be bound up in the jaw control so far. He doesn't have much stability in his lower jaw.

Yup, we worked on jaw stability a LONG time.  Ds didn't have any speech, so I would provide jaw support while he did a jaw drop (say /a/ or say /u/) for a response for things.  Lots of work on that jaw stability.  We did the straw bloks too.  

 

Well good.  Eventually we're going to have a little PROMPT is magic cohort on the boards.  We'll start a revolution!  :)

Edited by OhElizabeth
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Well good. Eventually we're going to have a little PROMPT is magic cohort on the boards. We'll start a revolution! :)

I just recommended getting a PROMPT eval this evening to a mom of a kid with hearing loss and articulation scores in the 1st percentile despite decent expressive language scores. The child's auditory-verbal therapist just told the mom to do more homework, as if practicing more is going to help a kid with apraxia.

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This is an aside, but my son had been mostly ignoring other kids at pre-school. Then he started aggressively hugging/squeezing them in a way they didn't like, and he did not pick up on them not liking it, and the teacher would need to intervene.

 

It was pretty concerning, and he got observed for it.

 

Then it was exciting news, bc the observer said he has a desire to play and interact with the other kids.

 

But be was lacking in play skills and initiation skills (knowing how to join a group, knowing how to ask kids to play with him).

 

So then he got some goals and strategies that helped a lot!

 

This is total autism for my son.

 

My older son had a speech delay, and I saw major, major frustration from him when he could not join in pretend play and when he was treated like a baby (which I did intervene and tell kids his age for a while). However with his speech delay, my son played with kids doing things like chase and playing with cars and trucks together. He did parallel play with noticing and copying other kids. He moved in to joint play. He was limited to play that didn't include so much language, but he was playing with kids, and could join in with a group of kids running around and playing together. Not that he always, always wanted to or never had it not work out, but often he wanted to and it did work out.

 

This was not the case with my son with autism.

 

My son had a more severe diagnosis when he was younger, so other kids do have some play skills but maybe they are more limited, less flexible, only with certain kids, and things like that.

 

But that can be the kind of thing that is a social skill for even a 3-year-old. And at whatever level, if he wants to interact and it is not successful, that is a concern.

 

There are things that would be caused by just a speech delay, but it does not explain everything.

 

Also, my son was closer to 5 when he started having the disappointments from kids not knowing he wanted to be a pirate in the game, before that his intelligibility was good enough to play.

 

Now -- he did not have such a bad speech delay either. But I have seen kids who manage to play quite a bit as young kids while having a greater speech delay, enough that I just do not think you can ascribe it all to language. But it does depend, too!

 

But that is the kind of thing where I think you share your concern re: the possibility of autism.

Edited by Lecka
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What we really want is to get *you* trained, Crimson.  Only then will we have succeeded.   :D

 

I actually asked PROMPT Institute if I could do the intro course as a licensed SLP Assistant (which I should have by next summer) and they said training was limited to fully certified SLP's. So that wouldn't be until 2019 at the earliest.

 

I don't know if I want to pursue the full PROMPT certification because I plan to specialize in auditory-verbal therapy for the deaf rather than treating CAS. But I would like to get trained in the assessment part so I know which clients need to be referred out. To me, that's an ethics thing.

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This is an aside, but my son had been mostly ignoring other kids at pre-school. Then he started aggressively hugging/squeezing them in a way they didn't like, and he did not pick up on them not liking it, and the teacher would need to intervene.

 

It was pretty concerning, and he got observed for it.

 

Then it was exciting news, bc the observer said he has a desire to play and interact with the other kids.

 

But be was lacking in play skills and initiation skills (knowing how to join a group, knowing how to ask kids to play with him).

 

So then he got some goals and strategies that helped a lot!

 

This is total autism for my son.

 

My older son had a speech delay, and I saw major, major frustration from him when he could not join in pretend play and when he was treated like a baby (which I did intervene and tell kids his age for a while). However with his speech delay, my son played with kids doing things like chase and playing with cars and trucks together. He did parallel play with noticing and copying other kids. He moved in to joint play. He was limited to play that didn't include so much language, but he was playing with kids, and could join in with a group of kids running around and playing together. Not that he always, always wanted to or never had it not work out, but often he wanted to and it did work out.

 

This was not the case with my son with autism.

 

My son had a more severe diagnosis when he was younger, so other kids do have some play skills but maybe they are more limited, less flexible, only with certain kids, and things like that.

 

But that can be the kind of thing that is a social skill for even a 3-year-old. And at whatever level, if he wants to interact and it is not successful, that is a concern.

 

There are things that would be caused by just a speech delay, but it does not explain everything.

 

Also, my son was closer to 5 when he started having the disappointments from kids not knowing he wanted to be a pirate in the game, before that his intelligibility was good enough to play.

 

Now -- he did not have such a bad speech delay either. But I have seen kids who manage to play quite a bit as young kids while having a greater speech delay, enough that I just do not think you can ascribe it all to language. But it does depend, too!

 

But that is the kind of thing where I think you share your concern re: the possibility of autism.

 

This is exactly where I am unsure! Parallel play is still totally normal for a 3 year old. He does not make any attempts to enter play by asking. He always just comes in and grabs whatever he wants and runs off or destroys his sisters' entire play structure for the heck of it and leaves. I would be more comforted if he came up and just starting copying what they were doing. If any of us are sitting on the couch, he'll be on top of us climbing, kicking, pushing his head into us (nudging?) for apparently no reason at all and if we say stop he will not. I often have to tell the girls to go their room, after I've picked him up a few times and said no, just so they'll not get hurt and then he runs to their door screaming to be let in  :sad: Every now and then, very rarely, he will engage with his sister if she initiates at her little picnic or something for a couple minutes taking tea from her or what have you. So maybe it's in there? Just not come out fully yet? 

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Does he do parallel play where he is paying attention a little to what other kids are doing, sometimes changing what he does to match what they are doing? I don't know if that is in he definition or whatever, but in thinking of it like that, parallel play is more than just 2 kids in the same area but not paying a bit of attention to each other. There would be some noticing and some matching.

 

I mean, I am not that knowledgeable, but those are things that we want my son to do, and we are happy when he does them. It shows he is noticing and responding to other people.

 

So I guess, is he really doing some great parallel play? Or is it more that it passes for parallel play bc hey, he is in the same room and he is playing with a toy.

 

That is a question I would have had to answer "not so much."

 

Then, yes, you do have a risk of it turning out to just be a speech delay, and later you think how silly you were to ever worry or do the eval. It is possible. But I think it is due diligence to go ahead and look into it.

 

Then, you are not looking for him to be at a zero. You are looking for him to be at a "he could benefit from some help" level. That does not mean "oh, it is zero, he has got zero skills." Kids start with a skill base!

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I'd venture to say he's in the same room, playing with toys and 9 times out of 10 totally oblivious to others which as I understand it is still parallel, being near, but not interested in others. The next level is associative and starting to mimic others which I think he should be doing by 4. He does engage me, asking me to look at what he's doing and doing what I suggest etc. Clear as mud I tell ya.

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I just googled out of curiosity, and it was saying parallel play IS just kids playing in the same room but not interacting.

 

But then it said, they would also sometimes observe other children and modify their own play based on what they saw other children doing.

 

I think that is the part that, if it is not so present, it would be more like a concern of autism.

 

That is more my opinion, or what I think with my son.

 

But it is why I think, you can't just excuse everything by saying "it is okay to only do parallel play." It is okay, but this can also be an area where there can be early signs. And there are a lot of strategies to help kids improve, too, so it is not too soon to try to do thinks to help kids with their play skills.

 

But I agree, he could just start to do all these things on his own in the next 6-12 months!

 

But I think, one, you can always a cancel an appointment.

 

Two, a professional may be able to see early signs and separate things out, where a parent can't or it is hard to tell for a parent.

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Also I am a pragmatist and there is a part of me that thinks, with the drinking it sounds like your son needs speech therapy. Your insurance will pay for speech therapy if there is an autism diagnosis (bc of an autism mandate in your state, most likely, that autism parents have fought for).

 

So I look at it like -- you have got some things that are concerning in the aggregate, enough that I think there is enough there to schedule an eval. And then -- if you do get it, it could help get better speech therapy (it sounds like).

 

It doesn't have to be a big deal, it doesn't mean you have to do any certain therapy. It doesn't lock you into anything. It doesn't commit you to anything.

 

But maybe it could give you more access to speech therapy, and that seems like it would be pretty good.

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Absolutely, I do want good speech therapy indeed.

 

I think that is a good plan, to get on a list and cancel if need be. He scared me the other day at the kids museum just totally zoning in to his play to the point that he never acknowledged me unless I physically touched him and put him in the stroller or if he was looking for a piece he needed to play with. I called his name, plenty close for him to hear, and he didn't even look up. I dunno, I guess he could just have a mix of speech delay/add/spd and not cross over into autism. We shall see, thanks again all for your thoughts!

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Depending on who you talk to, that mix you listed IS autism.  Have you had his hearing checked?  That would be a proactive thing to do while you wait for full evals for the autism question.  That's why I took my ds to the audiologist, because he wasn't responding.  It sounds funky when you describe it, but we were there long enough that they had it happen to them.  He had been talking with them, interacting with them, and when we began walking down the hall he just stopped!  They were calling, he wasn't responding.  Just poof.  And of course the professor and the two students totally noticed that.  But it *can* happen that it's hearing loss.  It would be a responsible thing to eliminate that as an explanation.  

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Yes, he had a full booth eval in September and passed. The audiologist said he did so well he was able to run a couple extra tests he doesn't normally give two year olds. Funny how things change, can't imagine him sitting on my lap now for that long and being compliant.

 

And gracious really? If he's fine socially though, I think that is what would make the difference? I'm hoping to get forms mailed off tomorrow to one autism center ( TEACCH in NC if anyone knows about it and their process!) and I'll follow up with the private neurologist we were referred to that hasn't called yet. Im now thinking multiple opinions would be good at this point, or get on a couple lists and see who gets us in faster.

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JJ, I apologize but I think my brain is totally blipping.  I forgot we were talking about a preschooler!  They can't do an APD screening until more like 5/6 and they more often want 7.  That's fabulous that you already had him into audiology.  So you know that the not responding is *not* due to hearing problems.  That's a really important thing to have eliminated!  So good job there.  

 

If you're in NC, I think they have disability scholarships.  Google and see.

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I don't agree with the idea that spd+adhd+speech delay is the same as autism, either.

 

I think there is a group of kids where it is like an overlap and they could be seen as one or the other.

 

But I don't think that is all kids.

 

It is social and the repetitive thing (which can mean so many things, but does mean something).

 

I used to think that spd was just a dodge for people who didn't want their kids to have a label of autism, but I have found out more about it (and there was a study I guess that debunked this idea). It is something a lot of people used to think, and now no one really thinks it anymore. I think, lol.

 

But my son is not borderline, he is well into "he definitely has autism," so it is not a concern for me, and I don't have a really strong opinion.

 

OP -- starting to do worse over the course of age 3 can be a pattern for autism. If you see this with things like interacting, engaging, paying attention to others, imitating others, then it is the kind of thing where it is a concern to bring up to a professional, and don't let yourself get blown off unless you are really comfortable with the answer and assurance you get.

 

Early treatment is not the best thing ever, but I think it can be good when it is appropriate, and you could be finding out your options. And if you do see a downturn that continues, you can see about addressing it.

 

It is also true -- kids have bad months. Kids shutdown in public spaces and it turns out to be spd. Kids have silent ear infections and have fluids in their ears, which can also cause non-responding with kids this age.

 

But it is like -- if it is spd, you want to know, and you probably want to know before he gets to a serious potty training kind of age (unless he is doing great in this area, and then that is awesome).

 

If you get pointed towards silent ear infections with intermittent hearing loss (if loss is the right word) then that is important to find out so it can be treated.

 

I do think there are still strong possibilities like that.

 

There are also seizure disorders that can mimic some of these symptoms. A lot of kids are recommended to have a test for seizures if they have times when they respond sometimes and other times they don't respond or seem like they are spaced out.

 

There really are people who go in with major suspicions of autism and come out with a referral for ekg (?) and then a month later their kid is on some seizure medication and no longer having absence seizures. I don't know a lot about it but this happened to someone in my town.

 

I watch kids who are 3, though, and I see a lot of referencing (looking at other kids to see what they are doing). My son used to have very low referencing. He is a lot better now. But I am shocked by how much referencing I see these little kids doing sometimes! There is a home daycare that I see taking kids on walks, and I can see kids doing it just by watching them for a few minutes.

 

There is a lot of opportunity for them to be looking around and seeing things, and the daycare woman has them do little fun races between trees, so they are looking at each other then.

 

My son did things like this less and less over the year he was 3, until he did not do it much at all. Oh, he did do it, but I would notice and be happy. Where with many other kids they are just doing it pretty often throughout the day.

 

But that is the kind of thing I think that specialists can spot at a younger age and answer the question of if it is a concern or if it isn't.

 

My son got tubes in his ears during this period and we had a lot of hope it would be the answer to his language delay and responding. But it turned out not to go that way for us. But it does go that way for many people, too.

 

It is a stressful age. It has been much easier for me since my son has been diagnosed and I have gotten support and we have a direction to go in. It is much easier than being directionless and needing to make a lot of choices all the time, and wonder about "what does it mean that this behavior happened one time, and then another time it didn't happen."

 

It is easier for me to have the question answered and not have to think about it anymore, and not have to have the double view where I am looking at my child and going "was that autism?" all the time. So that is how my personality is. But also, bc of my waiting and long waiting list, I pretty much knew several months before the appointment, so a lot of things for me mentally already happened before the diagnosis and the eval appointment. That is with my son getting diagnosed 2 weeks before he turned 4.

 

Where I live there is not very good screening so not many kids get diagnosed (or told they are at risk) before about this age, while in other locations a lot of kids are diagnosed younger and get an extra year of services.

 

It is frustrating to me, but we had a good year in a lot of ways when my son was 3, too. We did a lot of fun things, too, and I worked a lot with him on sharing, and he still gets complimented on how well he shares. Not that it is without hiccups, but it is also very good.

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Oh, just as an example, one little boy crouches down to look at a leaf or a bug. Other kids notice and go see what he is looking at.

 

Now, they are not actually interacting, but they have noticed that the child is looking at something, and wanted to know what it was.

 

I can't swear these kids are 3! Maybe they are short 4-year-olds. But I see some little things like this at church where I do know that kids are 3.

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I meant that comment about it being there pretty loosely.  Reality is you don't have to add much and there's heavy overlap.  The SPD questionnaire the OT used with us had things that were repetitive and social.  (to my mind)  I'm just coming from the perspective of having that first eval coming back with: ADHD + cognitive rigidity due to anxiety + social delay + SPD and people saying HELLO why was that not traded in for an ASD diagnosis?  And at that point it was simple: he had the repetitive behaviors but the psych didn't take the time to explore them.  It was there and it got missed.  So me, I get angry about that idea that someone is walking right up to something and they're like oh we didn't see this so maybe it's not.  Like really dig, take the time, kwim?  

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I used to think that spd was just a dodge for people who didn't want their kids to have a label of autism, but I have found out more about it (and there was a study I guess that debunked this idea). It is something a lot of people used to think, and now no one really thinks it anymore. I think, lol.

 

My brother has SPD and he is most definitely does NOT have ASD. He is Mr. "Life of the Party" always has a million friends around him, etc., etc. But he's also Mr. Fusspot when it comes to sensory sensitivity. When we were kids, I thought he was doing it for attention because hardly anybody knew about SPD (Jean Ayres was doing work on it at USC but it wasn't widely known outside OT circles).

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We do have scholarships but there's a waitlist, first come first serve yada yada. I doubt we'll see a dime but I'll try.

 

Yea the getting worse is the hardest part. He always did well in public and now he's a fairly loose canon. And yes he did that stimming/rocking thing once and I was so surprised and then hasn't since. So then I feel crazy again lol. It's madness, just give him the screen somebody >.<

 

So funny you mention his ears. He seems constantly congested. I try allergy meds when it gets bad. The other day he said "Ear.Hurt self"and pointed to his ear. I thought yay! He's telling me his ear hurts, bet he has an infection. Same day at the doc..his ear are totally clear. So, not great, I have no reliable way of knowing if my child is hurting :( So I often wonder if he ever has ear stuff going on and doesn't say anything.

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That is what a silent ear infection is, they can't see them when they look in their ear.

 

I guess?

 

It is totally confusing to me to be honest.

 

But, I have twins (one boy who has autism, one girl, they are 7 now) and they both had an expressive and receptive language delay when they were 18 months and I took them to EI screening. They both qualified for a speech lady to come to our house. At this time my son only said "ma," he didn't have 4 words. Everything was "ma." But he was a pretty expressive little guy with his one word.

 

Anyway -- they also have something called a tympanometer (or something) that measures if kids have fluids in their ears. But it is finicky and fluids can come and go.

 

Fast forward a little bit, and the speech lady feels strongly that my daughter especially may have fluids in her ears off and on, and then she thinks the same about my son.

 

Well, the audiology booth ----- it is possible for kids to have their ears be clear the day they go in.

 

My son didn't get results from the audiology booth, he was too squirmy I guess, I don't quite remember. My daughter had good hearing.

 

But the speech lady gave me some advice on talking to the pediatrician and telling her that my kids were showing signs of fluid in their ears even when it couldn't be seen with an otoscope. This is a thing, apparently.

 

So anyway ---- it turns out that with our situation, if a child has a receptive language delay, even if the other things are fuzzy, we can get tubes in their ears.

 

So, my twins both got tubes in their ears when they were 23 months.

 

A few days before they got tubes, we had a last appointment with the doctor to get ready for it. She couldn't see anything in their ears from looking.

 

Then when they got tubes, the doctor who did it said that my daughter had a silent infection in one ear such that she probably had very limited hearing in that ear. My son had silent infections in both ears, and one of them the doctor said was on the bad side.

 

So ---- they were having ear infections off and on, all along, even times I took them to the doctor and left with being told their ears were clear.

 

The doctor who did the tubes said this is just something that happens, that it is very hard to see sometimes. He said -- he can see it when he does the surgery, and often he sees this happen.

 

So then ---- my daughter made amazing progress. Three months later she was at totally normal language levels.

 

My son made progress, too. He started talking more. He didn't make the progress my daughter did. But then we said "well, it is just taking him longer, his ears were more blocked, so it makes sense." So I felt like -- we were doing good things at home, he just needed some more time to catch up. Then he ended up having autism.

 

Anyways ----- I got advice from the speech lady, to be more assertive at the doctor appointments, and to point out the receptive language delay and say he was in EI, and to say that they had on/off results with the tympanometer (which EI had one). Anyway -- she said to push for more, instead of having it just me "well, here are 3 times I brought my kids in to have their ears checked, but their ears were clear every time."

 

Also there is some link between congestion and fluids in their ears, so I should have been more aggressive with giving them medicine for any congestion at this time (I think?).

 

It is all on the confusing side to me. But it turned out to be good for them to get the tubes in their ears.

 

It is also definitely a thing, for some kids to have self-injurious behavior, and it turns out to be related to some kind of pain. It is something to look for when you see it.

 

There is another thing I have heard. If he is not responding to you, and you wonder if it is fluids, you can try to stand on one side of him. Then stand on the other side. If one side has fluids, he may not respond to you when you are on that side of him, b/c he doesn't hear you on that side. But then he could hear you fine from the other side. I have heard this is something people see when they have concerning non-responding, but then sometimes the child totally is responsive. It can just be that they heard you from their good side!

 

So I have heard that kids can be grumpy/moody, have the head-hitting, have the non-responding, have the receptive language delay, etc., from the silent ear infections and fluids.

 

But I am also a little like ---- well, that may not be the whole story. But it can be.

 

When we went to get their tubes in, they scheduled like 15 kids all on the same morning, and a doctor who does the surgery comes in that day, and he is really good at doing tubes, he does them all the time. So the other 12-13 kids had horror stories about puss, drainage from their ears, extreme pain, illness, etc. I felt like "do we really belong here?" But it worked out well, and it did turn out they both had silent infections at the time of the surgery. The doctor who does it said that they do often see kids improve in their receptive/expressive language after tubes, who had a delay before.

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When I say it is confusing to me, it is one of those things -- they show me a pamphlet and it has a picture of the inside of an ear, and then they start to explain it to me, and I just get totally lost. I do not really understand the whole fluids thing. I just know it exists.

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When I say it is confusing to me, it is one of those things -- they show me a pamphlet and it has a picture of the inside of an ear, and then they start to explain it to me, and I just get totally lost. I do not really understand the whole fluids thing. I just know it exists.

 

Anybody who REALLY is interested, PM me with your email and I can scan some pages from my intro to audiology textbook. But it isn't pretty :ack2:

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Crimson I'm going to take your word for it! Lol. He has an appointment with audiology here, as there was a delay in getting his records from last year. I just talked to them though and she said that they can look at the fluid. We go on Friday and thankfully he is congested now so we can really see if anything is going on. Thank you so much Lecka, I was going to cancel the appointment once they got the records.

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I hope the appointment will go well!

 

When we were doing it ---- it was very vague. It wasn't like they would say "okay, yes, there are fluids, and so your child's hearing is this way, and his pain level is this way." It would be more like "maybe there are fluids, probably there are fluids."

 

It turns out that once you know that the doctor cannot necessarily see things with the otoscope, you look at your child's behavior like: saying their ear hurts, pulling on their ear, shaking their head, tilting their head, etc. You can also say -- well, there is a receptive language delay, and maybe times the child does not respond to auditory things but does respond to visual things. Maybe times the child seems to respond when you are standing off to one side but not the other.

 

That is all pretty vague, though, with a small child.

 

Kind-of ironically for us, my son had some little head-shaking that was noticed and thought to be (and it probably was) a sign that he might have ear pain. Then that did totally go away when he had the tubes in. But then more than a year later, he had a phase when he was 3 when he was shaking his head a lot, all the time, and it was totally a thing where he had autism, he was stimming. But then there are things sometimes where you read about kids where it was thought they were just stimming, and then it turns out they had something hurting their teeth, or their ears, or they had acid reflux, or something. But b/c of other context, I do think that when he was doing it when he was older, it was more of just stimming. (Not exactly just stimming, b/c there was context for it and he was doing it for reasons, but I don't think it was for any medical or pain-related reason, I think it was more of thinking things were too loud for him or not wanting to follow directions.)

 

Two other things I have read about. One, fluids can be a risk factor for dyslexia, it may mean kids are not hearing the sounds in words as well, and may show up when they are a little older. It shows up on some lists for it.

 

Two, I didn't even hear about this until after my kids had tubes in! But some doctors prescribe antibiotics for the fluids instead of putting in tubes.

 

Some people think the anesthesia from the surgery makes their kids worse.

 

Some people who do multiple rounds of antibiotics for ear infections (that can be seen at the doctor I guess) will later think they gave way too many antibiotics, and it has hurt their child's stomach.

 

There are also, I don't know, pendulum swings in how doctors treat ear infections. Sometimes they think it is better to intervene less, and say "it will go away." Sometimes they think it is better to intervene more.

 

My kids honestly had a lot of the signs of ear pain, at least off and on, over about a year, so I do not feel like "oh, maybe I over-reacted." But doctors may not think it is good to treat something that might happen once or twice and go away on its own.

 

Then for antibiotics ---- I don't know a lot about this, but there are definitely people who think they gave too many antibiotics and then had side effects from the antibiotics.

 

So those are kind-of some issues.

 

It does get into the weird area where sometimes you are going "hey, he has said his ear hurts, and he has acted like his ear hurts, and he has a receptive language delay that is pretty significant" ------ and that is weird to say to a doctor, when what you want is some clear result that the doctor can see and show you.

 

We did get that some. My kids were getting the tympanometer with EI and then we were referred to an ENT office that had one, and we did go to the hearing booth once, too. That was something we had to do before they could get tubes.

 

And we definitely had times where they would say "yes, it looks like they have got fluids in their ears." But other times maybe the wouldn't, but then they would say, "well, their ears are small, and our little ear things are not just the right size, so they could actually have fluid in their ears."

 

I just got actual confirmation b/c of my kids having the active infections the day they got their tubes in. But I was told ---- maybe they don't have an active infection that day, and you don't get that confirmation. It doesn't mean they didn't still have them many other times.

 

And then on the other hand, I was also told that kids often grow out of it as their ears get bigger, so you don't know for sure that you are getting it right before they would have grown out of it anyway.

 

But ---- for me, it is something where I feel like it did work out, b/c my kids did both improve afterward and they were both seen to have active infections at the time.

 

It was also driving me crazy, to not know if my kids' ears were hurting, if I should give them Tylenol, if I shouldn't give them Tylenol, etc. etc. Should I take them to the doctor, to be told for a 4th time their ears were clear? Or would that just be a total waste of time? It was really hard on me.

 

I did find out, when I didn't keep taking them in, then the doctor doesn't have a record "oh, this kid has been brought in ten times in the last 6 months." That is the kind of thing that might flag them as "here is some concern." But since I didn't take them in every single time (since it was such a waste of time and demoralizing) then it was more on me to explain that to the doctor. They also didn't have it constantly, it was more like it would be happening, and then it would go away for a little while.

 

And then I did feel bad like "my poor kids and their lack of Tylenol and antibiotics." But then -- later I have heard of people who deeply regret having their kids have multiple rounds of antibiotics at this age, so it seems like ----- maybe that wouldn't have been any better. Though I also know people who have had no concerns at all from multiple rounds of antibiotics, so I don't think it is bad, either. It just makes me feel better, lol.

 

I also don't know if I could have pursued prescription allergy medication for them. My son has no signs of allergies now. My daughter seems like she has one or two times in the year, when I give her OTC allergy medicine. One time (about two years ago) I took her to the doctor and got prescription allergy medicine, and it seemed like it was about the same as the OTC medicine for her, and I only gave it to her for two weeks, and then she didn't need it anymore. I did not think of that at the time, but somebody said something that made me think of it later. It might have prevented a lot of the congestion. It is something I would have asked about if I had known to ask. I have heard of this being something that is a good solution, too, though -- probably for kids who really have allergies, and I don't know that my kids even had allergies. It is maybe more just one of those things I wonder about (though I don't wonder about it anymore, it has been so long ago now, and my kids haven't gone on to have allergies).

 

But we are definitely a tubes success story. It went smoothly. My kids did improve. I didn't see any more of those questionable ear ache signs, and they did both talk more -- like within two weeks, they were both noticeably talking more. I had been writing down everything my son said on a piece of paper taped to our refrigerator at this point, so it is more than "well, it seemed like he talked more." He really did talk more. For my daughter, the EI lady was counting the number of words she used in a sentence (or that kind of thing) and it improved soon after the tubes, too.

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That gives me a great idea of what to expect. I have often wondered about just doing allergy meds all the time. I am in the camp of as little antibiotics as possible too. He has never told me his ears hurt aside from that day. He has never pulled at them or anything, I have zero way to tell anything is wrong other than the nagging congestion that occasionally ramps up to interfere with his sleep and his behavior gets worse. You said it was done at 23 months, is there a time when its "too late?" My niece had something like 10 ear infections in a year when she was 2-3 and went to a consult for tubes. Her parents decided against it and the next year she had zero. She still tends to catch illness a lot, but her language is fantastic and always has been.

 

I don't know. Last night and today he has been spinning like crazy, biting and hitting, bouncing into things pinball style, reciting his little knock knock joke etc. He likely doesn't feel good, but it just solidifies getting the testing done ASAP.

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