Intro and need advice

Hiccup15

Hi, 

I've been a lurker for a while and have learned a lot. I have two boys, DS1 who is 4 1/2 and DS2 who is almost 2. DS2 has hemihyperplasia, low muscle tone, SPD, severe reflux which has caused food aversions. He sees PT, OT, feeding therapy and nutrition. I feel pretty good with where we are at because we have a plan. 

This is going to get long so I apologize. I have so many thoughts running through my head so this mind not make sense. With DS1 I'm overwhelmed and just lost on what to do. At DS2's 18 month appointment his pedi was freaking out because he did not score well on the ASD screening questionnaire. She recommended going through EI to get an appointment with a developmental pedi ASAP since there is a 10 month wait for appointments. 

DS2 behaves just like DS1. All of DS2 therapists have commented on how similar they are. I had remembered that we never filled out a questionnaire for DS1 because at the time we were going to a different pedi. So I found one online and he scored a 5, which said to speak with a medical professional. So I called his pedi who asked if I have any concerns with how he interacts with other children. I told her he has some problems with personal space and following some social cues. If a child doesn't want to play with him, he just gets closer and closer until he is face to face with him all while jumping up and down excitedly, which of course causes them to leave or get upset. Also if a child is making fun of him, he just ends up laughing along wanting to play. His pedi chalked all this up to immaturity and being a boy. 

A little more about DS1. He is in OT and speech. He stutters and has issues with word finding. He has always been a little more sensitive. He needs sunglasses if its sunny out. He complains and melts down with smells, like getting into the car when it's hot or when we are cooking. He can only wear seamless socks, certain shirts, and soft pants. He has had issues with crowds and noise and has trouble with going to stores or places with many people. 

The following issues I just don't know how to proceed with, I have spoken with his OT, but she really doesn't have many suggestions besides talking to him before hand and trying 123 magic. 

A few months ago DS1 expressed interest in Karate. His OT thought it was a good idea since he gives up very quickly with everything and she thought it might help his self confidence. The classes did not go well. He went to 7 classes. One every week. He spend the first 5 minutes of each class trying to get out. Then he would spend another 5-10 minutes throwing himself on the ground and rolling around. Then a few minutes of him standing but not participating and during this time if someone even looked at him it would send him running and screaming for the door. The last 5-10 minutes of class are OK. He does pretty well and seems to enjoy it. I really thought he would get better with each class but there hasn't been much change. During his 7th class it took him 35 minutes to get to being actually standing up. The classes are 45 minutes. 

He has had this happen in preschool as well. He has gone for 2 years now and has had the same teacher. He went 2 days a week for 2 1/2 hours. He has always said he loves school and he adores his teacher. She is very patient with him. Last spring it went to a new level of me having to carry him in kicking and screaming from the car into the classroom. On the few days he seemed OK walking into class he would just stand there. If his teacher was busy she would say DS1 why don't you play with this item/person, but he would just continue standing there. He would need her to come get him and take him to an activity. However, once he started she said he was pretty good except with transitions. 

He has had this issue with other classes he has taken. He took a sports class for a year. His classmates were in it so he begged to join. He didn't seem to enjoy it but he begged to stay in it. There were many classes where I came to pick him up and was told the whole class (1 hour) he sat crying on the benches because he didn't get the yellow item they were playing with that day. He is obsessed with yellow and giraffes. So everything has to be those two. They would try to calm him down and would offer him stickers ect...but it just made it worse because of course they didn't have a yellow sticker or a giraffe sticker. 

He is a complete angel with his OT, so she has a hard time believing this. She does give into some of his requests like he needs the yellow crayon or ball. Which, honestly isn't really realistic in real life. He does great one on one with no distractions. In this setup he just has issues with giving up quickly or not trying and it being too bright, smells, too hot, ect..

I feel like his pedi and even his therapists think i'm crazy. I just don't know what to do. DS1 has been wanting to sign up for gymnastics for two months now which I think he would technically love it. He is constantly doing flips and standing on his head, but I don't think he would actually enjoy the class kwim? I just don't know how deal with his behavior in these group activities. 

Thank you for reading, I know it got pretty long. Any advice or suggestions are really appreciated. 

 

bumpuser511563

Welcome to our board!

Does DS1 have an evaluation that has already been done? I might have missed that.

Hiccup15

Sailor Saturn said:

Welcome to our board!

Does DS1 have an evaluation that has already been done? I might have missed that.

He has not. I'm making an appointment with a developmental pedi just have been working with some insurance issues first. 

Hiccup15

wife07mom09 said:

Welcome! This is a great place for advice and support. Have you had either child seen by a psychologist or developmental pediatrician? That would be my start and is what I did. Therapists can only give therapy not make diagnoses. You need a diagnosis to proceed with more therapy or treatment. many of the boys sensory concerns and transition difficulty could fit autism but also adhd or other comorbid conditions which is why getting a professional involved to diagnose will take out the guesswork. Can you get a referral for one? I'd pull out of a group class until you have some help. Consider a school eval too of the wait is shorter but you still need a medical eval. You are doing a wonderful job with your boys.

Thank you! With DS2 we are going through EI to get an appointment with a developmental pedi. I was told this would allow me to get a sooner appointment. We have been in the process since April so we are currently just waiting . 

With DS1, his pedi is adamant that he doesn't need to see a developmental pedi, so will not give us a referral, so i'm working with insurance to see what I can do. I think paying out of pocket is the only way though. I've called around and they all have about 10 month waiting period, so I'm just kicking myself for not figuring this out sooner. He is getting a school eval at the end of August. 

funchicken

Welcome to the board! Have you had him evaluated through the school system? I think I would start there and get on a waiting list with a developmental pedi.

My oldest DD (6) has an ADHD and SPD diagnosis.  She also has a lot of anxiety.  She has a strong preference for the color blue, and she has some rigidity around transitions.  I go out of my way to deliberately sabotage her, and while it makes for an ugly meltdown sometimes, it has helped tremendously with her flexibility and her resilience.  Her teachers and her OT have been helpful with this as well.

We started the diagnosis process two years ago, and we've made so much progress since then.  DD's ability to cope with her sensory issues has gotten sooooo much better.  The ladies on this board have great advice.

hopecounts

I would get both kids evaluated it could be a co-morbid like ADHD or his other issues could be subsumed by an ASD diagnosis.

In the meantime try some 'just noticeable difference' work. Do something routine and change something small but noticeable to help him learn to be more comfortable with changes.

For example you are bouncing the ball after a few turns switch and roll the ball, if you are doing a song or mother goose rhyme change a phrase or line. that kind of thing. If his cup is always on the right side switch it to the left, etc basically just do little things to mix up the routine and help him learn that change/different isn't bad or scary and that he can handle it.

Hiccup15

hopecounts said:

I would get both kids evaluated it could be a co-morbid like ADHD or his other issues could be subsumed by an ASD diagnosis.

In the meantime try some 'just noticeable difference' work. Do something routine and change something small but noticeable to help him learn to be more comfortable with changes.

For example you are bouncing the ball after a few turns switch and roll the ball, if you are doing a song or mother goose rhyme change a phrase or line. that kind of thing. If his cup is always on the right side switch it to the left, etc basically just do little things to mix up the routine and help him learn that change/different isn't bad or scary and that he can handle it.

I haven't heard of just noticeable difference work but that sounds like something that might help. I will definitely try it. 

Hiccup15

Usm123 said:

wife07mom09 said:

Welcome! This is a great place for advice and support. Have you had either child seen by a psychologist or developmental pediatrician? That would be my start and is what I did. Therapists can only give therapy not make diagnoses. You need a diagnosis to proceed with more therapy or treatment. many of the boys sensory concerns and transition difficulty could fit autism but also adhd or other comorbid conditions which is why getting a professional involved to diagnose will take out the guesswork. Can you get a referral for one? I'd pull out of a group class until you have some help. Consider a school eval too of the wait is shorter but you still need a medical eval. You are doing a wonderful job with your boys.

Thank you! With DS2 we are going through EI to get an appointment with a developmental pedi. I was told this would allow me to get a sooner appointment. We have been in the process since April so we are currently just waiting . 

With DS1, his pedi is adamant that he doesn't need to see a developmental pedi, so will not give us a referral, so i'm working with insurance to see what I can do. I think paying out of pocket is the only way though. I've called around and they all have about 10 month waiting period, so I'm just kicking myself for not figuring this out sooner. He is getting a school eval at the end of August. 

--------stuck in quote---- How frustrating! Is it an option to change pedis since this one isn't taking your concerns seriously? I have no other advice beyond what others have said. You are doing a great job

This is our third pedi. That probably sounds bad, but we switched for good reasons. We can switch it's just at this point I feel like i'm just picking blindly. It's funny because she has been so concerned and proactive with DS2. I think it's because he has been missing milestones, hasn't gained weight in over a year ect... while DS1 has met his milestones just fine. 

Hiccup15

-auntie- said:

Hiccup15 said:

Hi, 

I've been a lurker for a while and have learned a lot. I have two boys, DS1 who is 4 1/2 and DS2 who is almost 2. DS2 has hemihyperplasia, low muscle tone, SPD, severe reflux which has caused food aversions. He sees PT, OT, feeding therapy and nutrition. I feel pretty good with where we are at because we have a plan. 

Sounds like you have a terrific plan in place for DS#2.

This is going to get long so I apologize.

Welcome. No apologies needed. Long, with lots of information, is how we roll here. 

I have so many thoughts running through my head so this mind not make sense.

You're actually a pretty articulate reporter.

 With DS1 I'm overwhelmed and just lost on what to do. At DS2's 18 month appointment his pedi was freaking out because he did not score well on the ASD screening questionnaire. She recommended going through EI to get an appointment with a developmental pedi ASAP since there is a 10 month wait for appointments. 

Good catch.  Getting in to see a top notch developmental pedi can take 6-12 months in most parts of the U.S.

DS2 behaves just like DS1. All of DS2 therapists have commented on how similar they are. I had remembered that we never filled out a questionnaire for DS1 because at the time we were going to a different pedi.

You previous pedi dropped the ball. All children should be screened using MCHAT. Even DS, who is 21 next month was screened using MCHAT at 18 and 24 months. he managed to raise some red flags, but not enough to trigger an eval.

 So I found one online and he scored a 5, which said to speak with a medical professional. So I called his pedi who asked if I have any concerns with how he interacts with other children. I told her he has some problems with personal space and following some social cues. If a child doesn't want to play with him, he just gets closer and closer until he is face to face with him all while jumping up and down excitedly, which of course causes them to leave or get upset. Also if a child is making fun of him, he just ends up laughing along wanting to play. His pedi chalked all this up to immaturity and being a boy. 

Oh. Dear. God. You really need a better pedi. Back when ASD was not as common a dx, my DS's PCP swore DS was just the "very bright, verbal and highly valued child of older parents". Yeah, um, no. FWIW, he did apologise when DS was dx'd. If this person will not refer you, find a competent physician who will. Under many HMO healthcare plans, PCPs lose income if they refer to specialists. If this person is putting their income ahead of your child's well being, you can do better.

A little more about DS1. He is in OT and speech. He stutters and has issues with word finding. He has always been a little more sensitive. He needs sunglasses if its sunny out. He complains and melts down with smells, like getting into the car when it's hot or when we are cooking. He can only wear seamless socks, certain shirts, and soft pants. He has had issues with crowds and noise and has trouble with going to stores or places with many people. 

Is he getting OT for fine motor issues or sensory?

The following issues I just don't know how to proceed with, I have spoken with his OT, but she really doesn't have many suggestions besides talking to him before hand and trying 123 magic. 

Ugh. If your "talking before hand" takes the form of a Social Story or a verbal behavior contract, that might be good advice. 1-2-3 Magic is an OK discipline program, but it isn't going to give DS#1 competencies around social interaction with peers. His peers will make a huge leap in social and emotional maturity in the next 12-18 months; he's at risk of being left in the dust if he doesn't get help around these areas.

A few months ago DS1 expressed interest in Karate. His OT thought it was a good idea since he gives up very quickly with everything and she thought it might help his self confidence. The classes did not go well. He went to 7 classes. One every week. He spend the first 5 minutes of each class trying to get out. Then he would spend another 5-10 minutes throwing himself on the ground and rolling around. Then a few minutes of him standing but not participating and during this time if someone even looked at him it would send him running and screaming for the door. The last 5-10 minutes of class are OK. He does pretty well and seems to enjoy it. I really thought he would get better with each class but there hasn't been much change. During his 7th class it took him 35 minutes to get to being actually standing up. The classes are 45 minutes. 

Have you shared this with your son's PCP? Because this is not how kids this age typically act. It sounds like transitions are especially hard for him and that maybe he has an idea about how something will be but not the resilience to be OK when the reality isn't an exact match.

He has had this happen in preschool as well. He has gone for 2 years now and has had the same teacher. He went 2 days a week for 2 1/2 hours. He has always said he loves school and he adores his teacher. She is very patient with him. Last spring it went to a new level of me having to carry him in kicking and screaming from the car into the classroom. On the few days he seemed OK walking into class he would just stand there. If his teacher was busy she would say DS1 why don't you play with this item/person, but he would just continue standing there. He would need her to come get him and take him to an activity. However, once he started she said he was pretty good except with transitions. 

A twice weekly program can be harder than a 3, 4 or 5 day one. The kids get less time together so the whole experience remains novel. Plus the kids get less opportunities to work on the parts of the day that aren't easy for them. Like transitions, or unstructured play, or activities that aren't a first choice. 

He has had this issue with other classes he has taken. He took a sports class for a year. His classmates were in it so he begged to join. He didn't seem to enjoy it but he begged to stay in it. There were many classes where I came to pick him up and was told the whole class (1 hour) he sat crying on the benches because he didn't get the yellow item they were playing with that day. He is obsessed with yellow and giraffes. So everything has to be those two. They would try to calm him down and would offer him stickers ect...but it just made it worse because of course they didn't have a yellow sticker or a giraffe sticker.

If he's melting down over this, it sounds like it's morphed into the territory of a special interest. That, with the transition issues and social difficulties, seem like ASD needs to be ruled out. 

He is a complete angel with his OT, so she has a hard time believing this. She does give into some of his requests like he needs the yellow crayon or ball. Which, honestly isn't really realistic in real life. He does great one on one with no distractions. In this setup he just has issues with giving up quickly or not trying and it being too bright, smells, too hot, ect..

My son has Aspergers, a now gone dx under the ASD umbrella. He was outgoing and "friendly" if clueless with peers. He was terrific with adults 1:1 until he became an adult and they became peers. As a little he was beloved by teachers, camp counselors and den leaders.

I feel like his pedi and even his therapists think i'm crazy. I just don't know what to do.

Screw 'em. They don't have the training to make the call on this. Trust your gut. You know him better than anybody. If you feel he's not doing as well as he should be, you are absolutely correct.

 DS1 has been wanting to sign up for gymnastics for two months now which I think he would technically love it. He is constantly doing flips and standing on his head, but I don't think he would actually enjoy the class kwim? I just don't know how deal with his behavior in these group activities. 

Funny you mention this. When DS was little, he spent a lot of time upside down. Either standing on his head or draped over a chair. He used to like to watch TV like this. It was something of a visual stim. I'd skip gymnastics until you have more information about what is driving his behavior and a plan in place to help him behave in a more expected and appropriate way.

Thank you for reading, I know it got pretty long. Any advice or suggestions are really appreciated. 

I'd schedule an appointment with the best dev pedi within a 2 hour commute. Ask to be placed on the cancellation list. If you need a referral, insist. If your pedi won't comply,  vote with your feet. You could/should also request an eval through your local school district. These can take upwards of 60 instructional days, so best to start that process tomorrow. Even if you do see a dev pedi and get a dx/tx plan, the school district must do their own workup to determine if he has educational needs.

 

Wow thank you for your thoughts. It really is nice to hear what others think. He is getting OT for both sensory and fine motor skills. I haven't heard of special interest but after googling, his obsession with giraffes and yellow does sound like it could be a special interest. He has a school evaluation scheduled for the end of August. 

That is funny your DS liked to be upside down while watching TV. I would say being upside down with legs draped over the back of the couch is DS1's preferred position for watching TV. 

With the school evaluation, I'm a little concerned because he does well with adults. Do they take that into consideration? He definitely has more issues when you throw other children in the mix. We do have him signed up for 4 days a week 3 1/2 hour days for the fall, and I had made a typo earlier he had been in a 3 day a week program the last two years. 

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Hiccup15

-auntie- said:

Hiccup15 said:

Wow thank you for your thoughts. It really is nice to hear what others think. He is getting OT for both sensory and fine motor skills. I haven't heard of special interest but after googling, his obsession with giraffes and yellow does sound like it could be a special interest. He has a school evaluation scheduled for the end of August. 

The special interest thing is sort of an Asperger thing. This is a group that can have a laser-like focus on something that appeals to them- coupled with average+ IQ they can be real experts in whatever their "thing" is. Sometimes their SI is something arcane or more "mature" than peers which can make them seem brighter or more developed than peers; it can also make it harder for them to connect and make friends based on shared interests.

The strong color preference is probably more of an example of rigid thinking. This is super common at this age for kids with an Asperger-like presentation. No doubt he likes yellow, but a compelling need to get "the yellow whatever" is probably rooted in anxiety, a need to control reality match his expectations and his relative  inability to self regulate.

Kids with ASD have a delay in social and emotional maturity. For the less impacted, the delay is about 1/3 of chronological age. It's part of why you're more concerned now- his behavior is more like a young three contrasted with his classmates who are fours who are developing rapidly in terms of emotional regulation, appropriate behavior and social skills. 

It's great that you already have a school eval scheduled. Make sure they do an MFE of all areas of suspected disability. You need the "full meal deal"- ideally an IQ test to get a guestimate about cognition, also testing to look for adaptive, social, speech, emotional regulation. Around speech, look for his social skills and use of language pragmatically as well as his ability to interpret things like idioms and inferred information. In addition to a WPPSI, a full Vineland and BASC2 would be useful for sorting out what's going on. ADHD should also be considered.

That is funny your DS liked to be upside down while watching TV. I would say being upside down with legs draped over the back of the couch is DS1's preferred position for watching TV. 

BTDT. TBH, I think DS's hypotonia also played into this. A lot of kids with his dx have low tone, especially when seated. In addition to his watching Tv draped over a chair, he sort of oozed out of chairs in class. Until we figured this out, teachers always made the assumption he was being a clown or disrespectful. Low tone in the trunk and/or hands can delay fine motor skills because kids fatigue more easily than their peers. The ability to cross the midline can also delay certain fine motor tasks that require both hands crossing the body or working together- shoe tying for instance.

With the school evaluation, I'm a little concerned because he does well with adults. Do they take that into consideration?

If they're any good, they'll pick up on this immediately. 

A well done school eval should include a couple of parent/teacher scales. The BASC2 and Vineland, for instance, are questionnaires/interviews with adults who care for the child in some capacity at this age. When DS was younger, I'd do one form and one of his teachers would do the same one and then they'd be compared. As a member of the Child Study Team, you can also submit your list of "parental concerns" to the school psych. I used to make a short list of concerns each with a brief description of impact. You could list poor transitioning which results in being unable to attend to a group lesson or poor social awareness that impacts his ability to interact with peers at recess. After 3, concerns have to be related to educational need- getting along with peers is always an educational need.

 He definitely has more issues when you throw other children in the mix. 

His work up via the school district should include at least one observation in class. Ideally the school psych would observe him during a structured time like circles and during a less structured time like recess or free play at this age. One thing to be aware of, is that some kiddos have a sort of honeymoon period at the start of the school year, if he's one of these kids, he may be a rule follower in the classroom, so the unstructured setting will be critical.

We do have him signed up for 4 days a week 3 1/2 hour days for the fall, and I had made a typo earlier he had been in a 3 day a week program the last two years. 

Sound great. I hope they can get you some answers and put a plan together to help him.

Meantime, you might want to find a copy of this book-

https://www.aspergersyndrome.org/Special-pages/The-OASIS-Guide-to-Asperger-Syndrome.aspx

or this one-

https://www.amazon.com/gp/product/0553806815/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=0553806815&linkCode=as2&tag=om057-20

See if either of these books describe a child who feels familiar to you. In the interest of full disclosure, Coplan's "Teddy" is about 85% DS.

He does have low muscle tone and weak core strength. He also has issues with balance. DS2's PT was the one who noticed it and has been giving us things to work with both boys on. I will check out the books. Thank you for all the information. This board is such a great support!

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Welcome!