Questions on development for Auntie

Micelle78

Auntie, I figured you would probably be the most experienced with a few questions I have.

Recap on DS, he just turned 4.  He has slight hypotonia, receptive/expressive speech delay, farsided vision, color blind (although still manages to get them right 99% of the time, its a family history on my side and its red/green color blind), sensory avoiding/seeking, and hyperlexic (actually sounds words out since age 2.5-3 and has impeccable memory-- probably has over 100 sight words at this point too).  Still struggles with receptive language but is a million times better than he was a year ago.

When he started speech at 2, he had 5 words no verbs.  By 2.5 the nouns by labeling were amazing (tell you the type of vehicle and new upper/lowercase, all the states on a map etc).  He still only had a handful of verbs.  Age three rolls around and we realize that the vision is REALLY bad after only a few visits with OT-- she picked up on some slight eye things.  Immediately started glasses and we noticed a burst of speech-- complete sentences and verbs added daily.  I believe this also to be helped from all the exercises/activities of his OT too.  She does a lot of crossing mid-line activities and swings.

He has been in glasses and OT for over a year and he is finally able to ride his trike a mile without difficulty when only a month or so ago he could go ten feet-- trying soooo hard to go further.  I did a lot of reading about ASD and vision as well as vision impacting NT speech.  Its amazing how interrelated the delays can be. He had a vision recheck last month and she mentioned trying vision therapy and I was all over it.  We started at twice a week for the past three weeks.  It may be too soon to attribute his recent growth in speech to it, but we are noticing another uptick in his comprehension/speech.  I used to have to use very repetitive sentence structure to make sure he *maybe* understood me.  Now he seems to understand a lot more and much more naturally.  His echolalia is almost completely gone.  The only time I hear it is when he is upset and crying or frustrated.  The things I just mentioned were not the things that changed overnight, that has been gradual-- not making some huge claim here.  However, he started referring to himself this week as "I" and his possessions as "my" which unless it was a rote-taught sentence like "I want _______" he will use third person when referencing himself.  This confuses people when he says things like "Do you want a drink of water?" He is actually saying that he wants a drink of water-- that kind of thing.

So the "I" and "my" were super cool to start hearing.  He also sat down the other day and was reading the ads from the junk mail.  He saw an add for Target and asked me if I liked the shoes on the page and which ones.  I told him I liked the blue ones.  He made a pinch with his fingers-- pretended to take them from the page and place them on my feet.  Then he said "There you go mom.  Some cool shoes for you."  This amazed me because it seems like more advanced imaginative play and it was never modeled for him.  He has played play kitchen with me a million times, but I modeled this is how you cook, wow that's hot etc.  He played but its not like it was totally made up on his own.  Anyway, he did the same thing the next day asking me if I liked the food on the page and asked which one I wanted to eat.  He pretended to eat the food and act it out and it was adorable. 

I guess my question is, after that long novel, are there things that are better indicators of a more functional life from evidence of kids doing things at a certain age?  It seems he really responds well to the therapies he is in.  Vision is just a trial basis right now since she said there needs to see evidence of it helping by the 6 week mark.  She is unsure if it will help him or not. A lot of vision therapy homework looks A LOT like OT homework.

I know there is probably not one way to answer my question or even actually answer my question.  I just was wondering how many speech delayed kids you have personally known that have had a less distinguishable delay as they aged.  Was it obvious when the child was younger that he may grow mostly out of it?  i have a feeling DS will always process what he hears slowly.  However, I am even seeing an outgrowing of sensory stuff too.  Any anecdotes or stories, I am all ears. 

I have also been thinking about ruling out medical stuff, but just not sure.  High levels of metals, lime disease--- that kind of thing.  I know that McRib is a real believer in that stuff and with a husband that is so resistant to getting an actual ASD eval from a pedi (not the school district-- which gave him an at-risk) he may be open to that kind of testing because it will look like an actual cause and not just the "label". 

The reason I was thinking about it is because there is a family history of more than one person with bi-polar, schizophrenia, OCD, anxiety, MS, leaky gut, and gluten intolerance on DH's side of the family and all of those conditions are involving siblings, parents or grandparents-- no one way up the family tree.  I know some of those conditions are linked to ASDs. 

typeset

"His echolalia is almost completely gone.  The only time I hear it is when he is upset and crying or frustrated.  ... However, he started referring to himself this week as 'I' and his possessions as 'my' which unless it was a rote-taught sentence like 'I want _______' he will use third person when referencing himself.  This confuses people when he says things like 'Do you want a drink of water?' He is actually saying that he wants a drink of water-- that kind of thing."

*snip*

"Do you want a drink of water?" in this instance is a functional form of delayed echolalia. He's likely memorized the phrase you use to ask him and is spewing it because that's easier than phrasing it for himself. I'm not saying your pronoun issues aren't real or resolving, but this is a thing. Inflection is a giveaway.

[fades into the woodwork and waits for auntie]

Micelle78

Ha!  Ok, yes Typeset, you have a point.  I guess that was a really bad example.  Sentences like those I would consider under the category of sentences we actually taught him by HEAVY repetition.

His pronoun reversal is pretty bad.  He says he, she, I, you, my her, it---all in incorrect contexts more than correct.  However he is using more inventive sentences.  He may say

What is that?
What is that thing?
What that thing is?
What that thing is are?
What that is mom?  That is? **Looks at me in stare two inches from my face when I don't respond**
What is that what is that this?

He changes his tone and urgency if I do not respond immediately too.  Eye contact and the social nature that people think is so funny/cute is not our problem.  You said in an earlier post that you can relate to that too

He is also saying different things different ways and mixing up where words are supposed to go in sentences.  the above is the only way I can think if right now.  Its pretty late.  I am tired

He also plays Angry Birds sometimes and asked me where a bird went the other night.  I said I didn't know.  He hates that answer I am not sure if its because he doesn't understand what I mean or if its because he wants an answer.  He looked at me and said "Maybe he went to his house."  That was such a weird observation.  Also he never used the word maybe before.  He probably heard the word and was trying it out.  I am such an echolalic monitor that I watch everything that he does on TV.  If he is watching TV, I am right there so I can pick up on anything he repeats.  The MIL and FIL for the longest time could not understand when he just sounded like he was getting better at speaking versus it actually being very advanced echolalia.  But I digress... they drive me crazy can you tell? HA!

Anyway, he will also use multiple verbs for the same description of a picture in his book different days that we read it and stuff like that. We have a lot of picture books with limited words that I bought when trying to get him to increase his vocabulary.   I guess that is what I was getting at.  He is using more words/verbs and CORRECTLY... its awesome. 

Micelle78

-auntie- said:

Micelle78 said:

Auntie, I figured you would probably be the most experienced with a few questions I have.

I think there are lots of people who have experiences that might play into this.

Recap on DS, he just turned 4.  He has slight hypotonia, receptive/expressive speech delay, farsided vision, color blind (although still manages to get them right 99% of the time, its a family history on my side and its red/green color blind), sensory avoiding/seeking, and hyperlexic (actually sounds words out since age 2.5-3 and has impeccable memory-- probably has over 100 sight words at this point too).  Still struggles with receptive language but is a million times better than he was a year ago.

At this age it's hard to know what's driving receptive language glitches. It could be weak auditory processing, cognitive delays, poor attention.
I am constantly wondering what is the biggest factor.  Sometimes it seems like he can actually understand me much more than he let on the day before but other times its like he doesn't understand a thing.  He also does what his OT call "flitting around" and that he needs to get his laps around the room in before he can focus.  Everytime he sees her he makes a very quick run around the room, says HI if someone is there to say HI to and takes a quick look to see if something looks fun.  He comes across as hyper and happy.

When he started speech at 2, he had 5 words no verbs.  By 2.5 the nouns by labeling were amazing (tell you the type of vehicle and new upper/lowercase, all the states on a map etc).  He still only had a handful of verbs.  

This is a common autism langauge thing. Boatloads of nouns and a paucity of verbs.
He has a ton of verbs now and they just happened all of a sudden in the last 3-5 months.

Age three rolls around and we realize that the vision is REALLY bad after only a few visits with OT-- she picked up on some slight eye things.  Immediately started glasses and we noticed a burst of speech-- complete sentences and verbs added daily.  I believe this also to be helped from all the exercises/activities of his OT too.  She does a lot of crossing mid-line activities and swings.

Not sure how vision plays into this. Every kid is different and vision and hearing issues can have an impact. on how ASD presents.
REALLY hoping that it helps.  He went from never getting on anything over a foot off the ground to climbing the two story McDs playland all the way at the top and waving to me after a week of glasses.

He has been in glasses and OT for over a year and he is finally able to ride his trike a mile without difficulty when only a month or so ago he could go ten feet-- trying soooo hard to go further.  

This is fabulous.
I totally cried when I saw him go so far.  He was soooo happy.  In fact my husband is an amateur videographer (hoping to film weddings this year) and he made the cutest video of DS riding in the park.  He had four cameras set up--one on the handlebars, one on the back of the trike filming his feet pushing the pedals, one far away for landscape shots and he was walking in front of him with a steady cam.  All set to an awesome song of course.

I did a lot of reading about ASD and vision as well as vision impacting NT speech.  Its amazing how interrelated the delays can be. He had a vision recheck last month and she mentioned trying vision therapy and I was all over it.  We started at twice a week for the past three weeks.  It may be too soon to attribute his recent growth in speech to it, but we are noticing another uptick in his comprehension/speech. 

Hard to say. Many of the people I know think vision therapy is woo, but I do know a few people who claim it helped their child. It can be hard to know whether you're seeing the impact of therapy of development when children make progress. When a child is progressing, it can be hard to determine what tx is having the biggest impact. DS had a lot of behaviors we put down to Aspergers and ADHD that just vanished when his dyslexia was repaired. These were behaviors addressed in therapy and with medication to limited effect.
I wish it was easier to tell what is causing what.  If vision is a huge contributor, it would be nice to see improvement of other things that we would not have to focus on anymore

 I used to have to use very repetitive sentence structure to make sure he *maybe* understood me.  Now he seems to understand a lot more and much more naturally.  His echolalia is almost completely gone.  The only time I hear it is when he is upset and crying or frustrated.  

That's great. But I find moms aren't generally as aware of functional echolalia as clinicians and peers might be. DS's psych would always call DS on it when it had gotten past me. TBH, I suspect dealing with nothing but kids on spectrum 40 hours a week gives him a better ear than I have. He could even cite which character it came from.
DS is interesting because he is ALWAYS TALKING.  He talks when he is doing something to himself or when he wants to interact with people.  Always talking.  When he had zero vocab he was jargoning all the time.  If he is watching TV he is commenting on the characters the whole time.  Oh no, the bird flew away--- oh he fell down--- oh this-oh that.  He used to just repeat what the characters were saying, usually hours later.

As far as being the narrator of his life, he will say "I am getting a drink of water, where is my cup?  Momma, where's my cup?  Get water for me momma?"  But its not the same phrasing everytime.  He is beginning to substitute words.  Like he might say "What't that?" "What is it?" "What is are that?" etc.  He also refers to objects as it, that, this after saying the word earlier.  Such as "The cat is little.  It is cute"

The things I just mentioned were not the things that changed overnight, that has been gradual-- not making some huge claim here.  However, he started referring to himself this week as "I" and his possessions as "my" which unless it was a rote-taught sentence like "I want _______" he will use third person when referencing himself.  This confuses people when he says things like "Do you want a drink of water?" He is actually saying that he wants a drink of water-- that kind of thing.

That's great.

So the "I" and "my" were super cool to start hearing.  

Absolutely.

He also sat down the other day and was reading the ads from the junk mail.  He saw an add for Target and asked me if I liked the shoes on the page and which ones.  I told him I liked the blue ones.  He made a pinch with his fingers-- pretended to take them from the page and place them on my feet.  Then he said "There you go mom.  Some cool shoes for you."  This amazed me because it seems like more advanced imaginative play and it was never modeled for him. 

I hate to burst your bubble, that's not what DS's psych would consider imaginary play. Sure, it's adorable and cute and even imaginative. Imaginary play would be if he engaged you in pretending your closet was the shoe store and he was the cleark helping you try on shoes. Kudos for the fact that he was aware that you might like the blue shoes. That's really huge.

Yes, it was really cool.  He would ask me if I liked certain clothing items and then I would say yes or no and then he would "place" them on me-- shoes for my feet, sunglasses on my face- that kind of thing.  The next day he found an ad with food and pretended to feed me and him.

He *kinda* does the store clerk thing.  He will pretend there is a scanner on his play kitchen counter and beep and then put the groceries in a big for me.  However, the set comes with a bag.  He just asks what I want to buy, scans it and then places it into the bag.  He then cooks for me and asks me if its good and tells me if something is hot.

He has played play kitchen with me a million times, but I modeled this is how you cook, wow that's hot etc.  He played but its not like it was totally made up on his own.  Anyway, he did the same thing the next day asking me if I liked the food on the page and asked which one I wanted to eat.  He pretended to eat the food and act it out and it was adorable. 

So it sounds like this might be an emerging skill for him. We did a lot of Floortime work on imaginary play when DS was newly dxd. Helping DS enjoy truly novel unscripted play helped him be a more appealing playmate for peers.

It was really hard for me to wrap my head around what imaginary play is and some of the very imaginative things DS did as play. Coplan actually talks about DS's Titanic debris field play in his book.   

I guess my question is, after that long novel, are there things that are better indicators of a more functional life from evidence of kids doing things at a certain age?  It seems he really responds well to the therapies he is in.  Vision is just a trial basis right now since she said there needs to see evidence of it helping by the 6 week mark.  She is unsure if it will help him or not. A lot of vision therapy homework looks A LOT like OT homework.

That's the $64,000 Question.

We all want to know that our kid will respond well to the interventions we put in place and will have the best possible outcome. At 4, it's hard to know what lies ahead- comorbid like ADHD, NVLD, Specific LD, tics and bi-polar are all common and aren't generally dx'd until the child is in elementary school or beyond.

It's really hard to say. I've known kids who started their school careers in specialized ASD classrooms who were able to bridge to mainstream and then off to college successfully. I know kids who were dxd in high school who never  got traction toward making the steps toward independence in adulthood. I know of adults who were never dxd until middle age, who got no supports aside from competent parenting who are employed as attorneys, scientist and IT professionals. I also know people who got terrific supports early on who ended up with advanced degrees who are unemployable because of poor self regulation, executive function deficits and/or social behaviors.

I belong to a small group of friends whose sons got dxd years ago. Of the 4 who are college-aged, only 2 have been successful in college so far. The kid who got a single question wrong on his SAT is working toward a PhD; TBH he had a hard time getting past the interviews for a TA position and ended up staying where he did his undergrad which wasn't ideal. DS is the other managing college, but the verdict is out regarding his junior/senior years and beyond. The other two buys are brighter than DS and don't have the same dyslexia issues that impacted us. Neither lived up to their initial promise as primary grade students- once higher order thinking, applications, abstract reasoning and literature based instruction kicked in, they ceased to be top of their class. Both struggled in high school- one dropped out and took the GED the other's mom was able to get the school to accept some community college classes for credit toward graduation. The one with the GED is attending school part time, does some freelance web work and has a girl friend. The other is sitting on his mom's couch with a list of things he has to do before mom'll send him to college. She's newly remarried and feels strongly that he attend the school where his dad is a tenured professor. He's an anxious kid who suffers with inertia.

I wish he came with an owner's manual. I just want him to have a semi-regular school experience, grow up have a job that is one he will want, and have friendships and romantic relationships.  I know that's what every mother wants.  I just hate spending time worrying about that part of his life already.

I know there is probably not one way to answer my question or even actually answer my question.  I just was wondering how many speech delayed kids you have personally known that have had a less distinguishable delay as they aged.  Was it obvious when the child was younger that he may grow mostly out of it? 

I know a few. often they're kids who are less egaged socially. Because they don't particularly care to interact with people, which is the opposite of the classic Aspergers dx, they actually look less weird sometimes.

In terms of outcome, DS dev pedi thinks IQ is probably the most important predictor of how well a child will do as an adult. DS's psychologist thinks flexible thinking plays a huge role in outcome. 

https://www.drcoplan.com/asd-in-3d-part-iii-the-warmer-the-water-the-faster-the-ice-melts

Dr. Coplan also makes the point that even if a child "loses" the dx as an adult, it's not as if they are NT. They generally meet the criteria for some other mental or behavioral health dx. 

https://www.psychologytoday.com/blog/making-sense-autistic-spectrum-disorders/201008/017-losing-the-asd-diagnosis-does-not-equal-cur

 i have a feeling DS will always process what he hears slowly.  However, I am even seeing an outgrowing of sensory stuff too.  Any anecdotes or stories, I am all ears.  

DS has largely outgrown his sensory. DS has never done any OT or sensory work. We addressed it strictly from a behavioral approach. He'd say he still has some sensory issues around sound, but he copes well. They aren't limiting him. The kid who only wanted to wear soft Hannas and cotton fibers eventually got to the point where he could march 5 miles in late June wearing a black wool suit and a hat while re-enactors fire off muskets. He's out in 90*F today wearing a black wool vest and a 50/50 dress shirt and his Red Cap hat.

Auditory processing is an emerging skill in children until puberty. You can expect this to improve over time. He may never got to a place where he processes as easily or quickly as someone who is NT, but you can expect some growth.
This would literally help everything.  Its the root of most of his and my frustration.  When communication is limited, so is finding ways to explain why you should do something or not do something, besides I am craving the day he comes home and has a real conversation with me.  One where he talks about his day, I know some people on this board can totally relate to this.

I have also been thinking about ruling out medical stuff, but just not sure.  High levels of metals, lime disease--- that kind of thing.  I know that McRib is a real believer in that stuff and with a husband that is so resistant to getting an actual ASD eval from a pedi (not the school district-- which gave him an at-risk) he may be open to that kind of testing because it will look like an actual cause and not just the "label".  

Not a choice I would make.
I was just throwing it out there.  DH and I actually had another loooooong talk the other night.  He said a lot of things that surprised me because he usually masks his feelings of fear around this topic with a pompous attitude that DS is fine and just needs to catch up and ASDs are just the "dx du jur."  Yesterday's ADD is today's ASD. 

He is super skeptical.  He said he is not in denial, he knows DS is not NT but firmly feels its something else.  He said that if we get a dx it will surely be ASD because with the DSM5 it lumps it all together and anything that is not NT will be given the dx ASD, so what is the point of a dx.  Anyway, he is closer to being ok with just getting DS dx'd.  If you remember, he wanted me to wait until DS was 5, which is next summer.  We were going to wait on kinder until 6 because he is born in the middle of the summer.

The reason I was thinking about it is because there is a family history of more than one person with bi-polar, schizophrenia, OCD, anxiety, MS, leaky gut, and gluten intolerance on DH's side of the family and all of those conditions are involving siblings, parents or grandparents-- no one way up the family tree.  I know some of those conditions are linked to ASDs. 

All the more reason to actually seek the full dx for your child.
I know.  Thanks as always for your thoughts

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