Speech question for Auntie

Micelle78

So Auntie I realize you are neither a fortune teller or have actual met my son but... I have a question for you anyway,

I just posted about the compression shirt and I am seeing a difference, albeit subtle, but its there.  The difference has more to do with him talking better than actually keeping the sensory seeking behavior away.  I have seen a reduction in sensory behavior in the evenings, but its still there.

So it leads to my actual question which is his speech delay.  He has both receptive/expressive and his SLP moved 2 hours away so we started with another one.  She did her own eval about 3 weeks ago and it did not really surprise me with the results.  He is about a month from turning 4.  She used the PSL4 test with him and I watched the whole thing.  She would ask him questions about the picture such as "What happened?"  The picture shows a bike that is bent and laying in the grass.  DS screams "BIKE!"  very excitedly and then goes on to say "That bike is red.  Wow its a bike!" Although that was an answer it wasn't THE ANSWER.

Other questions that he clearly did not understand he would look at her face, back at the page, back at her face and in an attempt to please her, he described in great detail anything he could think of--- color, size, shape of objects etc. and smile and look slightly worried that maybe he was wrong.  (Mother's observation--take it with a grain of salt).  It was hard to watch but he was super cooperative and enjoyed the time with her. (He is a people lover FTR)

So he scored a 4th% for receptive and a 12th% for expressive.  Sucks I know.  Although I at least made it through this without crying (like I did the first time with the first SLP).  I don't know what to think of his potential and his future.  I know it is just one snapshot of one day, but it can not be disregarded.  We have come a LONG way and he didn't even use a verb until he was almost 2.5 yo and now like yesterday says stuff like "Mommy, do you see the car?  I see it.  Its a big red Toyota truck." (Yeah we are on to memorizing car badges)

So interestingly too,  his hyperlexia took on a whole new form.  He has probably memorized over 200 words and has the ability to sound things out more easily.  On one if his books it said "Find the button that is colored red, and press it to hear the word.  Can you say red?  Can you point to the red fire truck?"  he read this to me while he sat on my lap and read in a tone, rhythm, and speed that was very natural.  He didn't stop to sound it out or anything.  He has also decoded words recently that are multiple syllables.  Construction Zone was "Contrazen zen"  He also has read words like: bulldozer, animal, numbers, etc

Last night since we have Amazon prime, he wanted to watch Blue's Clue's (Yes its the classics from the 90s and he loves it)  I asked him if he wanted to watch the episode Blue goes to school and he said "Oh yes mommy! Blue goes to school. Yeah!"  The episodes all have an actual name that flashes first and it was actually called "Blue takes you to school" and not what I called it.  He never saw the phrase before and he immediately said word for word what it said as he pointed in the air at each word.

I realize that hyperlexia can present itself and not directly affect the ability for the child to speak, however how many kids have you known that a receptive language issue and hyperlexia are both there and the child does well enough to function when they are an adult?  Really I guess I am looking for assurance that this may be a good thing.  He does not stim around it.  He is always calm and enjoys reading to me, his one year old sister or his dad.  He enjoys many activities-- loves being outdoors and playing legitimately with toys.  In fact yesterday he told me his car was going through a carwash-- imaginitive play that I had not necessarily have proof was there since there is such a significant speech delay. 

He also that same day said "Here you go mommy.  You play with this red car-- you drive it, you drive the car mommy."  he grabbed his own car and made noises and pushed it around.  I am not sure if you remember this, but he is the same kid that picked up something in the shape of Utah at barely 3yo and came over to me and said "Utah" (he memorized all the states)

Hopefully my story didn't ramble too much.  DH and I argued a lot today.  Basically he is having a hard time dealing with the emotions of raising our son and he takes the looks of others and comments too hard.  To top it off, we have a 13 month old that already has about 5 words or so.  Its painful for him to see her develop "NT"

TIA!

kcisthebombdotcom

I'm not auntie but I'll answer anyway. language skills are not a reliable indicator of future success. I attend groups at my local autism center and there's two women with adult children. One child didn't speak until 5 and was labeled as severe. Another had a child who spoke on time and was expected to mainstream by kindie. The once nonverbal child is in finishing college and has a job while the other lives at home and there's no hope she will ever have the skills to live independently. It's all a crapshoot. All you can do is hope for the best and prepare for the worst.

Micelle78

-auntie- said:

Micelle78 said:

So Auntie I realize you are neither a fortune teller or have actual met my son but... I have a question for you anyway,

I just posted about the compression shirt and I am seeing a difference, albeit subtle, but its there.  The difference has more to do with him talking better than actually keeping the sensory seeking behavior away.  I have seen a reduction in sensory behavior in the evenings, but its still there.

It's great that he's getting a benefit from it. Are you working with an OT or is the compression shirt something you're trying on your own. Sometimes OTs prescribe weighted vests, lap pads and blankets which can dial down sensory seeking behavior and help a child settle. 

A couple years ago DS went with his scout troop to visit the USNA where a SEAL let the guys try on the gear. Knowing this kit is pretty heavy, I asked DS how it felt on and he said "Actually, the weight felt pretty good on".

We are using an OT recommendation for this.  It also needed a pedi refferal in order to be covered by my insurance.  I am lucky being a teacher that its covered 80%-- which for two shirts leaves my total at $105-- yes the shirts are $250 each and custom made to your child's measurements.

So it leads to my actual question which is his speech delay.  He has both receptive/expressive and his SLP moved 2 hours away so we started with another one.  She did her own eval about 3 weeks ago and it did not really surprise me with the results.  He is about a month from turning 4.  She used the PSL4 test with him and I watched the whole thing.  She would ask him questions about the picture such as "What happened?"  The picture shows a bike that is bent and laying in the grass.  DS screams "BIKE!"  very excitedly and then goes on to say "That bike is red.  Wow its a bike!" Although that was an answer it wasn't THE ANSWER.

This is a classic example of a common ASD trait- the inability to answer "wh" questions. This quirky has a couple ASD glitches that converge and get in the way of the ability to do this effectively-

"Wh" questions do not make sense to him.  "What is that?" is his favorite thing to ask right now though.  He barely started to understand "Where" in context of where someone is right now.  Out of the blue a few months ago he said this "Where's daddy? When my husband went in the house to grab something and we were all hanging outside.  He is also into asking "WHat they doin?"  This literally is asked 10xs or more a day when he does not have the words to understand what is happening.  Like the man across the street was using his table saw and it was loud "What he doin'? What he doin' mommy?"  and he is pointing at the guy.  He will ask what I am doing what baby sis is doing ... on and on.

- Poor Theory of Mind. He probably doesn't quite "get" that what he thinks is different than what the SLP thinks. He may assume she knows what happened and they can move on from that point.
I have no clue what is going on in his head despite my best attempts

Bright as DS is, this was a hill to die on for us. DS was constantly assuming teachers knew he knew material when taking tests because he'd discussed it in class. In writing, he had a hard time navigating between what he could safely assume was the base level of his intended audience and offer details appropriate to their ability to understand and need for information. This was a problem well into high school even with it being something we all worked on. He started his grad project as a sophomore and getting him to write to his intended audience was a challenge. It was two pieces, a history of a local short line railroad and the impact on the areas development and a companion coloring book that covered the same material in a format appropriate for an elementary aged child. 

- Central Coherence. This is another odd ASD issue. It's sort of not seeing the forest for the trees. It sounds a bit like he was fixated on one part of the picture- "red bike" and missed the fact that the bent frame and the bike on the ground were import to the question.

I think right now he has no reference to bikes really.  He has hypotonia and does not have the strength in his hands to hold grip or leg power to push-- although its getting better.  He has been in OT almost a year and this skills are emerging.We have a set of flashcards I use for vocabulary building with him and he knew one of the pictures had something broken.  But the phrase "What happened?"  in any part of his life he would not be able to answer.  This is not a concept he "gets" yet. 

- Emerging auditory processing. He may have been able to answer the question had he had more scaffolding. Like if there was more information - maybe if he'd been told a story about kids out riding bikes or something.

I can see the auditory processing coming slowly because instead of having to say exactly like this "DS, do you want MORE crackers?"  I can just say "Hey do you want another one?"  Its feels so good to hear him say "Oh yeah mommy" instead of having to say it slowly and the same way every time.  KWIM?

- Emerging expressive/receptive language skills. Maybe he just couldn't figure out what she wanted from him in terms of information. Or maybe he couldn't put together the words to express what he though happened. Or maybe he's learned he gets a big reaction for labeling objects (common in families where parents are anxious about # of words a child has) and he's falling back on what makes you happy.
He has a lot of experience making me happy with labeling.  Its how we got him to talk.  He loves any kind of thing that he knows I will get happy about.  He does flashcards willingly, reads willingly, just about any activity that I want to do, he is right there with me smiling.

- Test glitch. Peabody is normed for 2 1/2+ years, but maybe some of the concepts are unfamiliar to him. Not making excuses for your DS, but standardized assessments aren't perfect tools. Does your son have the experiential background to be able to parse that picture? My own DS couldn't pedal a trike at your kid's age, he had no older sibs with bikes in the house- he would have no personal bank of information at 3 to sort that out.
Knowing what i know now about how his mind works and experience as a teacher, the test did not seem representative of what he knows, basically is shows what he doesn't know and thats mainly how to answer the WH questions

Other questions that he clearly did not understand he would look at her face, back at the page, back at her face and in an attempt to please her, he described in great detail anything he could think of--- color, size, shape of objects etc. and smile and look slightly worried that maybe he was wrong.  (Mother's observation--take it with a grain of salt).  It was hard to watch but he was super cooperative and enjoyed the time with her. (He is a people lover FTR)

Looking back at her is huge. Not all kids on spectrum would do this. Nor would they care that their answers had the power to please or disappoint someone. This is a very good thing.

He has always had good eye contact and a need to see your reaction and interact.  I have stories about him at two years old because he scared me a few times.  One time we were in Mc Donalds-- he noticed a guy reading the paper and ran over to him and leaned in to see what he was reading and next thing I know he is trying to get into the old man's lap and read the story.  then another time we were standing in line at the grocery store and he was holding my hand and I turned around to see a shocked woman holding his other hand trying to gracefully let go as DS beamed a huge smile at her.  Yesterday we were walking into a store and he exclaims "Oh!  Hi kids!  What you doing?  What you doing kids?"  And he was trying to go up to them to talk.  They were about 2, 4, 6 years old, so maybe he viewed them as peers.  ia m not sure. 

So he scored a 4th% for receptive and a 12th% for expressive.  Sucks I know.  Although I at least made it through this without crying (like I did the first time with the first SLP). 

Somehow seeing it on paper makes it worse. When DS was in 6th, his Vineland put him in the 1/10th of 0.1%tile for social communication. Whole I won't argue he was pretty clueless, he wasn't the house plant his scores would suggest. He had friends in scouts, could participate in group projects, make a purchase independently in a store. But yikes!

Yes, paper makes it a lot worse, but it can also give me power to show MIL and FIL that its real and a professional will back me up.  They make a lot of excuses for him and its getting better but its still there.  Yesterday we took DS to this thing fundraiser event that let kids look at emergencdy vehicles, construction vehicles, etc and get in them and look around and have fun.  DS I *think* was overstimulated and immediately wanted to go home even though he loves cars and other vehicles a lot.  DH was not having it and said he will get over it and lets keep walking.  So we stayed longer than the 5 minutes but DS was really tantrumy and didn't enjoy it and then finally had a n epic meltdown.  part of me was actually happy DH saw this because he needed to realize that its real.  He doesnt believe the sensory piece of our issues, thinks feeding therapy and OT are a waste of money and the compression shirt makes him look too obvious that he has special needs.  In the end of course, DH apologized but we had a awesome argument too. 

When we picked up the one year old from the ILs house afterwords, MIL kept saying maybe DS was too tired maybe this, maybe that.  Then she went on to question the compression shirt which led me to defend in a very brief explanation that it is something we are trying right now . UGH

 I don't know what to think of his potential and his future.  I know it is just one snapshot of one day, but it can not be disregarded.  We have come a LONG way and he didn't even use a verb until he was almost 2.5 yo and now like yesterday says stuff like "Mommy, do you see the car?  I see it.  Its a big red Toyota truck." (Yeah we are on to memorizing car badges)

It's really hard to say where he'll end up at this age. I know kids who were nonverbal until they were as sold as 8 who were mostly mainstreamed by middle school. LOL, recognizing automobile makes and models is one of DS's superpowers, too.
I wish someone had a crystal ball for real.  Its so hard and its sometimes harder since I work with children as a profession. 

So interestingly too,  his hyperlexia took on a whole new form.  He has probably memorized over 200 words and has the ability to sound things out more easily.  On one if his books it said "Find the button that is colored red, and press it to hear the word.  Can you say red?  Can you point to the red fire truck?"  he read this to me while he sat on my lap and read in a tone, rhythm, and speed that was very natural.  He didn't stop to sound it out or anything.  He has also decoded words recently that are multiple syllables.  Construction Zone was "Contrazen zen"  He also has read words like: bulldozer, animal, numbers, etc

Sounds like he's got a strong rote memory and good decoding. That's not a bad thing. At all. It sounds, too, like some of the time he's "reading" to you he's engaging in some echolalia or script. Some kids on spectrum are terrific mimics, you don't want to encourage this too much. DS's psych would suggest toys that talk go bye-bye to avoid dysfunctional speech patterns and more echolalia. Sometimes bright kids will use functional echolalia for significant portions of all their communication. You have to be careful around this.
My husband calls it echo--lollipop and yes, he was and is in some ways still the king of this.  That helps us sometimes because he will use a script that fits an awkward social situation where we do not want to talk about his issues.

However, this was a bad example because he reads off cereal boxes and all kinds of stuff IRL that no one has read to him.  If he gets stuck on a word, he will ask me what it is.  This book is one my mom found in her closet, we were going to get rid of it because it is very babyish and she was letting my one year old play with it. 

Last night since we have Amazon prime, he wanted to watch Blue's Clue's (Yes its the classics from the 90s and he loves it)  I asked him if he wanted to watch the episode Blue goes to school and he said "Oh yes mommy! Blue goes to school. Yeah!"  The episodes all have an actual name that flashes first and it was actually called "Blue takes you to school" and not what I called it.  He never saw the phrase before and he immediately said word for word what it said as he pointed in the air at each word.

DS enjoyed Blue as a preschooler. It's a cute show. Spoiler alert: Steve didn't really go away to college, he joined a rock band. DS was never happy with Joe, because change is bad. LOL, yes

Sounds like he's reading. Hopefully his comprehension will grow with his ability to decode. On one hand, if he's a competent reader in the primary grades, they can focus on social and written expression goals without worrying too much about learning to read.
Comprehension is what I was hoping would spark from this.  In fact he has a bunch of verb cards that are just photos-- not sure if you are familiar with the Lauri verb cards-- anyway, I was thinking about typing up sentences and having him match them to the picture.  For example one of my sentences would say "The girl is hugging the boy" and he also has the flashcards of opposites.  I could write "The toolbox is open." and another sentence would say"The toolbox is closed." and have him match them

I am hoping that it will all help, but as I type this to you I just feel heavy hearted about it all.  Especially after reading KC_13s response to me
I realize that hyperlexia can present itself and not directly affect the ability for the child to speak, however how many kids have you known that a receptive language issue and hyperlexia are both there and the child does well enough to function when they are an adult?  Really I guess I am looking for assurance that this may be a good thing.

It's really hard to say. Most of the kids I know who are adults now have a more Aspergers presentation. They're all but born talking and most of them were identified much older than your son because their speech was largely age appropriate of advanced. A few had glitches, but they were minor things. DS went through a phase when he was a toddler where he spoke in the 3rd person gerrund tense, but it normalized within weeks.

I wish it was an Aspergers presentation because the talking would not be our issue.  Its weird that everything but the talking does point that way for him.  You know I have mentioned earlier, we are waiting until kindie to get the DX

Other things can impact receptive language- the ability to process and retain auditory input which matures right into puberty. Cognition matters. So does a desire to interact and focus on an activity that might not be a preferred one.
He is a happy and easy going kid when he is not in sensory overload.  his vision is really bad 6+ farsighted in both eyes, so the only things that have not been preferred activities had been the fine motor ones.  He does not care to string little beads or draw as much but he has days where he will.  His vision is not corrected fully because the doctor wants to keep his eyes from being dependent on the lenses.  His vision is a neurological one and his eyes are functionally fine.

  He does not stim around it.  He is always calm and enjoys reading to me, his one year old sister or his dad.  He enjoys many activities-- loves being outdoors and playing legitimately with toys.  In fact yesterday he told me his car was going through a carwash-- imaginitive play that I had not necessarily have proof was there since there is such a significant speech delay.  

That's great. Imaginative play, assuming it's not scripts from another source or the same restricted play each time, is huge.
This one is not from scripts because I ask EVERYONE to keep me in the loop about things he watches and does with them.  I can't possibly know it all but I really watch so that I can tell what is echolalia and what isn't.  My husband has been fooled more than once and I hated that it was me that burst his bubble.

He also that same day said "Here you go mommy.  You play with this red car-- you drive it, you drive the car mommy."  he grabbed his own car and made noises and pushed it around.  I am not sure if you remember this, but he is the same kid that picked up something in the shape of Utah at barely 3yo and came over to me and said "Utah" (he memorized all the states)

It's great that he engaged you and was playing appropriately.
I am guilty of buying this kid a crap ton of different toys, flashcards, puzzles, small play kitchen, wooden playhouse, every fine motor toy melissa and doug make and a small library because I have Amazon prime and two day shipping kicks butt!  We can afford it and I do a lot of research on my own on how to help kids learn different skills, so why not. 

I think the variety of activities I have for him at home as well as being in preschool, seeing his same age cousins once a week, and me and husband actually playing with him every night he has never had an issue with appropriate play.  We let him play on his own too and watch as he tries to do stuff with his one year old sister.  Yesterday he was so happy because they could both fit in the laundry basket together.

Hopefully my story didn't ramble too much.  DH and I argued a lot today.  Basically he is having a hard time dealing with the emotions of raising our son and he takes the looks of others and comments too hard.  To top it off, we have a 13 month old that already has about 5 words or so.  Its painful for him to see her develop "NT" 

You can't and shouldn't protect your DH from these feelings. If he's going to grow into the dad your DS needs, he has to suffer through this and see his son as other people see him. It's an unhappy experience, but necessary.

This part sucks and makes it hard.  I feel like the past two years were more like ten.  The amount of feelings, fears, and arguing have taken their toll on us.  We somehow keep it going for each other but its so hard.  The thing we have going for us is that we have known each other since we were 18 and didn't get married until 29 and we are 35 now.  We dated other people but stayed in touch from age 20-28. 

Dads are almost always behind moms in terms of seeing what's "off" in their child. Sometimes it's best to let dad catch up on his own, by being engaged and out in the world with the child and at any appointments, so he can't stay in denial but won't get angry with you for pointing out the issues. 

And try to enjoy your well developing DD. Watching a kid grow and learn on the "normal" trajectory is an amazing journey.
Oh we love DD too   I am getting to experience some things for the first time.

TIA!