Sensory issues? LDs?

[TracyP]

Hi all! I'm hoping you can help me help my ds. He had breathing problems shortly after he was born and spent his first week in the NICU. He came home and screamed for the next few months. We never figured out why and it has gotten better but he still handles everything worse than most kids and this causes a lot of breakdowns. If everything isn't 'just so' he will be wailing. He hit some developmental milestones late in his first year...social and verbal. OK, there is the short background story.

 

Now his speech is delayed and he has just started seeing speech therapy. She thought it would be a good idea to talk to OT about some sensory issues she suspected he might have...excessive drooling and mouthing of EVERYTHING. Yesterday was our second time at OT and I am very frustrated. Here are my issues.

1. She has scored his profile and doesn't feel he has any major sensory issues but she thinks he still needs to be seen by her. :confused:

2. She sits and chats with me the whole time. Is she purposely ignoring ds for some reason? So he doesn't feel 'watched' or something? Allthough that doesn't explain why she doesn't turn back to him when he finishes his task.:confused:

3. I mentioned that I was worried about him being delayed in other areas. She said she was "pretty sure" he has a learning disability. I asked if we could do some sort of assessment and she said that is not her area of expertise. A little later in the convo she said you can't really diagnose ld's until a child is over 5. :confused:...again...aargh!

4. Then she said I should put him in ps because he is "obviously" delayed socially. Ummm, he is 3! I don't think they take 3 yo's! He already goes to a preschool once a week. I just don't get that AT ALL. I can tell he doesn't like the lady but he is polite and does what she asks. He is not shy and clingy like his older brother was at that age.:confused:

5. Lastly she tell me he has fine motor delays. She would like to give him a more formal assessment because he couldn't draw a circle when she evaluated him. That's fine, let's check it out further, but I mention he does draw circles at home. She then argues with me because he didn't for her. Then she says that it really doesn't matter because the things on her list are for 3-4 yo's and he has several months before he would technically be behind.:confused:

 

Can someone translate for me? Am I wasting my time going down the OT road or should I stick it out? Who do I talk to about LD's? Or do I just wait it out for the next year or so and focus on the ST?(this is where I am leaning right now) I would really appreciate any help or advice you can give.

[Critterfixer]

Don't stick it out and wait for it to get better.

Continue the speech therapy--I'm betting whatever else needs to be done that one is going to be continued and needed.

Talk to your pediatrician. Get a referral to a specialty center that has a good repuation in handling developmental problems (as he spent time in the NICU this could be important) and a neuropsychological evaluation is probably going to be needed for him.

 

Yes, there are learning problems that cannot be diagnosed until he is older. But there are plenty of things now that need to be checked out. I don't know any medical doctor that would wait to start treatment if they had a high index of suspicion of an illness, and I don't know why it would be useful to wait until your child is behind to say, "Oh, he's behind."

[rafiki]

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[Dobela]

Hi all! I'm hoping you can help me help my ds. He had breathing problems shortly after he was born and spent his first week in the NICU. He came home and screamed for the next few months. We never figured out why and it has gotten better but he still handles everything worse than most kids and this causes a lot of breakdowns. If everything isn't 'just so' he will be wailing. He hit some developmental milestones late in his first year...social and verbal. OK, there is the short background story.

 

Now his speech is delayed and he has just started seeing speech therapy. She thought it would be a good idea to talk to OT about some sensory issues she suspected he might have...excessive drooling and mouthing of EVERYTHING. Yesterday was our second time at OT and I am very frustrated. Here are my issues.

 

Excessive drooling could be a sign of low oral motor muscle tone. Has the SLP said anything in that direction?

1. She has scored his profile and doesn't feel he has any major sensory issues but she thinks he still needs to be seen by her. :confused: What is she basing this on? Did he score low on other assessments? Does he have low muscle tone or fine motor delays as well?

 

2. She sits and chats with me the whole time. Is she purposely ignoring ds for some reason? So he doesn't feel 'watched' or something? Allthough that doesn't explain why she doesn't turn back to him when he finishes his task.:confused: I have had other therapists do this as well. Part of it is to observe the child, part is to give the parent full attention, and part of it may be becuase she thinks you need to be the one disciplining him if he needs it and you are in the room.

3. I mentioned that I was worried about him being delayed in other areas. She said she was "pretty sure" he has a learning disability. I asked if we could do some sort of assessment and she said that is not her area of expertise. A little later in the convo she said you can't really diagnose ld's until a child is over 5. :confused:...again...aargh! OK, she is right and still talking about the same thing, but she isn't a great communicator. I am an Early Childhood Developmental Specialist (or I was before coming home full time LOL). By saying she is pretty sure he had a learning disability she is most likely coming from experience. Many, if not most, children needing early intervention will at some point be diagnosed with a learning disability of some type. They are different learners from the beginning. Someone who works with many young kids can tell the difference usually between kids that haven't been exposed to the skills and kids who don't have the skill because they are wired differently. She may be saying that she senses your child is one that is wired differently.

 

That being said, while the child may have a learning disability, by definition (DSM, laws/regulations and insurance and all those that define it) will call it a developmental delay until about age 5 because they are not old enough for public school and are not technically in an educational setting as such. Also, assessments for IQ and achievement are not very reliable before age 5 due to the wide variance of 'typical' expectations. Once a child reaches age 5, if they are exhibiting the same delays, those making the diagnosis will begin calling it a learning disability.

4. Then she said I should put him in ps because he is "obviously" delayed socially. Ummm, he is 3! I don't think they take 3 yo's! He already goes to a preschool once a week. I just don't get that AT ALL. I can tell he doesn't like the lady but he is polite and does what she asks. He is not shy and clingy like his older brother was at that age.:confused:

5. Lastly she tell me he has fine motor delays. She would like to give him a more formal assessment because he couldn't draw a circle when she evaluated him. That's fine, let's check it out further, but I mention he does draw circles at home. She then argues with me because he didn't for her. Then she says that it really doesn't matter because the things on her list are for 3-4 yo's and he has several months before he would technically be behind.:confused:

 

Can someone translate for me? Am I wasting my time going down the OT road or should I stick it out? Who do I talk to about LD's? Or do I just wait it out for the next year or so and focus on the ST?(this is where I am leaning right now) I would really appreciate any help or advice you can give.

Honestly, I would probably look for another OT or ask for another evaluation by another therapist. I would be very put off by her personality.

 

My dd was also premature with health problems inthe beginning. While she had never quialified for therapy before she astounded us all by qualifying for PT, OT, and speech when we only expected 1. I have switched to a private provider. The care and quality of the therapists is much higher in my opinion.

[PeterPan]

I was going to ask about the oral tone too. Also read about verbal and oral apraxia. He could have either or both. Depending on what you think after you read about those, you may want a new SLP. Definitely a new OT.

[TracyP]

Don't stick it out and wait for it to get better.

Continue the speech therapy--I'm betting whatever else needs to be done that one is going to be continued and needed.

Talk to your pediatrician. Get a referral to a specialty center that has a good repuation in handling developmental problems (as he spent time in the NICU this could be important) and a neuropsychological evaluation is probably going to be needed for him.

 

Yes, there are learning problems that cannot be diagnosed until he is older. But there are plenty of things now that need to be checked out. I don't know any medical doctor that would wait to start treatment if they had a high index of suspicion of an illness, and I don't know why it would be useful to wait until your child is behind to say, "Oh, he's behind."

 

The doctor doesn't think ds is delayed but he(doctor) just had a horrible family tragedy and he was hard to talk to last time I was there. I don't want to start searching for a new doctor yet but I may have to at some point. IYO is this something that could wait until August? The doc will have a little time to "heal" and ds will be due for a 4yo check up. He will have a few months of speech therapy under his belt that will hopefully help too.

 

 

Is your current therapist one through early intervention? We've been through early intervention and the school therapist, neither of which we had a good experience with. I would keep the current therapist until you have a new plan in place. Check with your local homeschool group, if you are not a member, search for a local group on yahoo and ask them who they recommend for therapy and evaluations. I really think the private route is a much more experienced and higher quality route. Do follow your gut though, moms know when something just isn't right.

 

This is a private therapist. I debated going through EI and decided not to thinking this way would be better. We are in a very small town and are probably lucky to have one at all. I guess I shouldn't be shocked to have poor quality. After cooling off and talking to dh I will give this OT a few more sessions. She rubbed me the wrong way but will have to travel over an hour to the next closest place.

 

Honestly, I would probably look for another OT or ask for another evaluation by another therapist. I would be very put off by her personality.

 

My dd was also premature with health problems inthe beginning. While she had never quialified for therapy before she astounded us all by qualifying for PT, OT, and speech when we only expected 1. I have switched to a private provider. The care and quality of the therapists is much higher in my opinion.

 

Thank you, thank you. Your POV is very helpful. I filled out a sensory profile and the OT said she scored it and nothing jumped out as being a problem. She has not assessed him at all except her initial eval that was about 10 minutes of draw this, cut this, because she couldn't find her usual stuff. As I posted above finding someone new is going to be difficult. I absolutely will if needed but I can't figure out whether it is actually needed. I don't want to be flippant if she can really help him but she keeps talking about the importance of crawling. That is fine but we should probably stay home then where he can crawl over the couches, through the tunnels, under the bench, etc. like he does all day playing. How important is this?

 

I was going to ask about the oral tone too. Also read about verbal and oral apraxia. He could have either or both. Depending on what you think after you read about those, you may want a new SLP. Definitely a new OT.

 

The SLP has not mentioned anything about oral tone. I do really like her and so does my son. I will ask her specifically about these things next time we are there. My computer needs help and will not let me search. I will talk to her and do some searching when computer gets fixed next week and see if we need to go with someone different. This is definitely where my major concern lies right now. I am almost positive the doctor said something about apraxia when ds was younger and didn't talk at all. He said we'd wait and see and I guess once he started talking it didn't get brought up again. I remember the doc explaining it as you say where is the quarter and they point to it, but you hand them a quarter and they don't have the ability to recall the word 'quarter'. Is this apraxia?

 

I have a few questions "hiding" in here so I will repost them. Assuming there may be an ld, can we wait a little bit? Just until ds is 4 (August) and has a bit of speech therapy under his belt?

 

Is there a point to OT if there isn't a sensory issue?

 

Would you drive an hour to see a "good" SLP or OT? Is quality that important?

 

Does anyone have links to information that may pertain to my situation? I can't search for some reason and I don't think I'd know where to begin even if I could.

 

Thanks so much.

[PeterPan]

Tracy, hope you can get your computer searching again soon. Does it have a bug or virus or something? YES you need to research apraxia. Your doc didn't give you up to date advice. If he suspected it back then, he should have sent you for an evaluation with someone who treats a lot of apraxia THEN, RIGHT AWAY. There's no need to wait.

 

I'm going to say this straight up. I don't think your speech therapist knows enough to help him, and you need to find a new one. The drooling is a huge indicator of problems. I drive 2 1/2 hours to take my ds to his speech therapist, one who treats only apraxia, so YES I would drive for a good one. I suggest you do some reading at http://www.promptinstitute.com'>http://www.promptinstitute.com'>http://www.promptinstitute.com'>http://www.promptinstitute.com and contact them for SLP's who do PROMPT. An SLP who deals with a lot of this and has experience will assess his oral tone and do things for it. You don't need an OT for that part. Just the fact that she hasn't told you the cause of his drooling is your lightning bolt clue that this SLP *doesn't* know enough to help him. Please get a new SLP.

 

Here, I'll throw you a few links.

http://www.cherab.org/information/aginmdapraxia.html#neurodevelopmentalevaluation This has a really convenient summary of apraxia, both verbal and oral, and should help you sort things out.

http://www.promptinstitute.com This is who you contact to find a PROMPT therapist. Mine is certified. There are levels of study (workshop 1, workshop 2, certified), and they'll tell you the qualifications of each person on the list for your area. Ask if they don't. http://www.youtube.com/watch?v=oa9KOMtY-N0 This is a youtube video, 48 minutes long, where Deborah Hayden (who developed PROMPT) explains all about, why it works, and shows videos.

 

Ok, now a few more things. What your doctor was talking about was that with apraxia there's a gap between their EXPRESSIVE language (what they can get out) and their RECEPTIVE language (what they understand). It's a huge red flag for apraxia. He also mentioned dropping words. That's another huge red flag for apraxia. So you can have a dc who totally understands, wants to say things, etc. but has trouble getting it out. That's apraxia. Apraxia is MOTOR CONTROL. That's also why it doesn't respond as well to regular speech therapy, because they can't imitate. They need help with the motor control.

 

So no, I would not "stick it out" with an SLP who isn't experienced with apraxia. If you have apraxia, you need to high-tail it to someone who treats it and knows what to do for it. There are specific things they will do to improve his oral tone, breath support, etc. that could make a dramatic difference very quickly. There are things they will have you do for sensory stimulation in the mouth to help with the mouthing. You just need a different therapist, one who sees a lot of this and who knows what to do.

 

PROMPT is not "cue-ing" btw. Sometimes an SLP will claim to do "prompting" but hasn't taken the PROMPT courses. You want PROMPT. Given that your ds is 4, you could even travel and do intensive therapy for say a week if need be. I've heard stories of people who did that and got unbelievable improvement. PROMPT is amazing, because it teaches you things you can carry over into the home. Regular speech therapy is all about the therapist. PROMPT is so intense in the actual sessions, you do them less frequently and then carry it over at home. The therapist will show you what to do, simple changes you can bring into your everyday routines that will get him moving forward.

 

Last thing. I wouldn't fret over LD's or supposed spectrum disorder diagnoses or anything else until you get his speech working properly. Withdrawal is common with apraxia. Yes, he could have a spectrum disorder or other problem. But it could also be that when you get him able to communicate better, some of what they're seeing as outside behaviors will disappear. Right now you can't tell what's inside. It's like he's a little chrysalis, a cocoon, a pupa. Good speech therapy will let that come out. And it doesn't take long. At the parent workshop for PROMPT I attended, we saw video of a boy, age 5 or 6 (I forget), who you would have SWORN was on the spectrum, just from looking at all his behaviors. 16 weeks of PROMPT therapy later and the boy was totally different, sitting there looking you in the eye, interacting, totally present, and TALKING. When they can communicate, then what's on the inside can come out. Don't accept the fear-mongering and half answers. If this SLP doesn't even know what's causing him to DROOL, then she sure isn't qualified to help his apraxia.

 

Guess you could say it's something I feel strongly about, eh? :)

 

Get your answers. Do your research. There's also a really active apraxiakids yahoo group. You have some nutritional options like fish oil to try to boost his DHA levels. My ds gets improvement in his speech even with flax oil.

[TracyP]

OhElizabeth, I:001_wub: you right now. Thank you, thank you, thank you. I will check out all the links. I scanned quickly and do see some other "red flags". I so appreciate you having strong feelings on this.:) I am feeling so lost right now and um, stupid.:blushing: He *just* learned to blow (blowing out candles and such), I have seen him want to say something and just not try, poor boy. Okay, moving on. Thanks again.

[PeterPan]

OhElizabeth, I:001_wub: you right now. Thank you, thank you, thank you. I will check out all the links. I scanned quickly and do see some other "red flags". I so appreciate you having strong feelings on this.:) I am feeling so lost right now and um, stupid.:blushing: He *just* learned to blow (blowing out candles and such), I have seen him want to say something and just not try, poor boy. Okay, moving on. Thanks again.

 

Oh poor thing! (I mean your boy with the candles...) But you know, you did the best you knew. Now you know a new step to take. PROMPT *works*, so check it out. You're going to be able to find a speech therapist to help you, now that you know what you're looking for. It's a learning curve. Not like I knew any of this before last fall. We're all newbies. :)