Advice needed on school situation for two differing needs and thoughts on ds

st.augbride · February 2014

Hi guys, I'm looking for advice and thoughts on our school situation given my kids' unique special needs. My daughter as I've posted has severe hearing loss in both ears (just got a CI), so she needs to go to a school focusing on developing her oral/auditory skills. We have a great school that is 30-50 minutes away (depending on traffic) that we will have her attend. Ds can also attend this school too, as it is mostly a school for typically hearing kids who serve as peer models for the hearing loss kids. For the kids with typical hearing, they need to be highly verbal and highly social. Ds is both, but not in every situation. Now, to that I say, who is? But he is a little different in subtle ways, which I think are related to his own developmental differences. He was my first SN kiddo, born early from growth restriction, delayed in motor skills, minor neurological issues, years of therapies, appointments, surgeries, etc... Today, he is well caught up and not in any therapy. He is still a terrible eater and is difficult to get to eat, but his growth is ok since we use distractions, etc... to get him to eat enough. His language is great for his age, and he does love other kids. He's been in a typical preschool for almost a year and does very well there. But sometimes he is happy to do what all the other kids do and sometimes he wants to play completely alone, depending on his mood. I see the same at home when we have get togethers with friends. Sometimes he is great and plays really well with the other kids his age, and other times he gets overwhelmed seemingly and will go off in a different room and play alone. That almost always happens when it is a different environment, even if it's the same friends he always plays with. Anyhow, I can't say I've thought too much of it, but it is different than the other kids who seem happy to just jump into any play situation and talk, talk, talk. He talks a ton once he warms up, but it takes him an hour plus to warm up. Anyhow, I throw this all out there because this hearing loss school that dd will go to has a crazy application process for the typical hearing kids, including a play visit. Ds 'failed' his play visit because he did not make eye contact, connect to any kids or activities, and had red flags for developmental concerns in their eyes for the reasons cited above. Granted, this was a 30 minute session with 6 3 year olds and 7 or so instructors watching and commenting on their every move. It was odd and uncomfortable to me, let alone my super sensitive and initially shy ds. They normally would just reject him, but because they know my hearing loss kid needs their school they asked me to discuss their concerns to give ds a chance for the sibling priority thing. I told them he is social, great with eye contact, does well at school, etc... and it is true, but maybe he wouldn't be good for a school where all other kids selected are super social and similar? Or maybe he would? I have no idea. They have me doubting it for him and I'm sure they would be concerned if he does go. But like I said, dd NEEDS this school. They could go to separate schools, but man that would be brutal on us for family time/work/commuting. Anyone have any thoughts on ds based on what I describe? Other things to add is he definitely does cycle through obsessions. Right now it's the solar system and he knows everything about space. But, he is great with pretend play and you can redirect him happily to other topics and activities, but he STRONGLY prefers space. Other than that, he does have some sensory issues, but nothing that stops him, and he has some motor planning issues, but he compensates well when motivated. HE is a smart kid with a great sense of humor and LOVES his family and being together. He prefers smaller groups and one-on-one rather than larger crowds and settings, but he can adjust to that too. He doesn't tantrum much and can be redirected when he does. I'd guess anxiety is an issue for him (was for me as a kid). He can sit still and concentrate on different activities for long periods, but not when sitting to eat. And then randomly, sometimes he will struggle a lot to sit still without fidgeting/kicking/etc...Anyhow, I welcome any thoughts here. Perhaps I'm overanalyzing and there's nothing to worry about, but from his beginning, it's hard to not worry. Thanks.

Assembly_Reqd · February 2014

I wouldn't.

If this is a private school and their sole purpose is serving deaf children in an oral environment, they have no reason to focus on your son. He does not fall into their data collection numbers. Nor are they obligated by the law.

20-50% of deaf children have additional special needs. I would also ask the school their percentage of "Deaf Plus" students and how they are served in case your daughter could fall into that category in the future.

I would plan on finding the best public school for your son and suck it up a few years until you know if your daughter and the oral school are a good fit. If she succeeds in an all oral environment you could then mainstream her to the same public school as your son.

I know a parent in your county who has a deaf daughter about 16-ish months. This parent is a mentor and in a VERY ideal position in MoCo to help you out if you want. She is the Hoh/deaf coordinator for the high school where many of the deaf kids are sent. She is deaf, signs and is oral. Her husband is hearing. PM me if you are interested.

st.augbride · February 2014

I think this school is seen as a great preschool for kids without any issues, so typically developing kids, and then they insert a few hearing loss kids into each room. It's the perfect school for dd.

For ds, I just can't tell. It can go either way. I remember feeling this way before he started the school he's in now, and he has done great. He's probably one of the more social kids among his class when he is interested. For instance, I took him to a birthday party for a classmate this weekend, and as soon as he saw the birthday boy he got so excited and despite the fact that they were at a big jumpy castle, which he loves, he was more interested in running up to his little friend to say happy birthday. And then as he saw his other friends get there, he pointed them all out to me and said hi to each (he was the only 3 yr old doing this) and then told me "all my friends are here!". So it's funny, it was a new environment but he got very excited seeing his school friends and playing with them. But then like last night we went to a friends house where he's been before though infrequently, and his friends there that he always sees (our friends) were all in a room playing and he wanted to be in a different room alone for a while. Then he slowly warmed up and started playing the game that one little friend was playing and then did better after that.

So, I suspect he will adjust to a new environment at this school and ultimately bond and do well, but I hate that it's such a judge-y environment and that they already would be looking at him closely for problems.

And I do think he will have some other developmental differences pop up since he did have a different start. Once he hits K, we will make sure he's at a great public school or a private that can accommodate any needs. But until K, we need a full-time school (county ones are part-time) since we both work.

So, this would be just for next year and the year after. Auntie--it's the 'trust your gut' statement that rings so true. My gut says he is better where he is but would also be ok at the other school.

As for Asperger's, he is followed by a developmental ped who is our area's ASD go-to guy, and he doesn't feel that he is anywhere on the spectrum, nor do we. But I do think SPD, anxiety, and other factors are involved, possibly ADHD down the road, and of course motor planning issues that are subtle. The food problems started at birth and are from the growth restriction. Most IUGR kids seem to hate food. It's pretty stressful.

Assembly--Sure, I'd love the contact. That would be great. We've been involved with the d/hoh county program and it's been great, but we want to do an AVT/oral only approach that involves typically hearing kids as models and the county program keeps the d/hoh kids separated (we aren't signing at all except for basic basics as she is doing great receptively with one hearing aid and soon she will have her HA plus the CI activated which I know will do wonders for her).

st.augbride · February 2014

Sorry, no clue where all my paragraphs went...

st.augbride · February 2014

Thanks for your perspective, Auntie. I agree that we'd have more benefits available (36k worth of ABA therapy per year) if we had an ASD diagnosis. At one point I even put his dev ped on the spot and asked if in any way, shape or form he thought it was possible so we could get those services, and he just said he isn't on the spectrum so it wouldn't be appropriate for him to fudge that. I myself have sensory issues (would rather have a hole in my shirt rather than a tag; can't wear necklaces without driving myself crazy; can't touch certain materials like velvet and rough towels; the thought of wet paper is terrifying, lol) and had extreme anxiety as a kid (I remember my mom needing to call my teacher at home when I was 5 and have her tell me it was ok that I left my homework at school because I couldn't stop sobbing and was hyperventilating over it for hours; also, I was painfully shy and my mom used to have to make my friends for me; now, I am the opposite). The motor planning stuff is due to him taking a neurological hit from the IUGR, which also places him at higher risk for ASD. I think we are trapped in a grey area until he's older and know more. Yes, I know the teachers are looking out for these things as they need to be. Heck, it's part of the reason why I know it's a great place for dd. It's just hard to be reminded how we have two very unique SN among both kiddos. All of this has been such a strain on us as a family (we recently learned that the deafness may be linked to a heart condition too that we all share). Dh and I are barely getting by, trying to also maintain f/t jobs since we need that for income/insurance, so it's rough. If we end up with the killer commute plus two separate schools, we will likely need to move anyway and then will need another school for ds too. I think I need a magic 8 ball to tell me what to do...

st.augbride · February 2014

Ok, for the life of me, how on earth do you create new paragraphs with this new format? I'm not on a phone! Just a regular computer...grrr

bumpuser511563 · February 2014

I would understand why they would create such a model for your DD's future school for her to excel but I would not change your DS's school. I would keep him there if I were you.

I have an experience of DS being in the wrong class. DS had a DX of PDD-NOS at the time and the entire IEP team recommended to put him in the University sponsored Autism room. I then agreed hoping that we would get a better teacher that would understand DS.

It turns out that DS was the highest functioning in the class and he was doing all the bad behaviors that the other kids were exhibiting to get attention from the adults. The other students would look at him as an example but DS did not have any peers to look up to. The other students were non-verbal.

This was a mistake and now the autism teacher is transitioning him to the developmentally delayed class where he belongs and is doing well in.

st.augbride · February 2014

Thanks, everyone. I really appreciate hearing the experiences of others. I think I will schedule an appointment with our develop ped to discuss the school issues, since school placement is one of his specialties. I don't want ds in the wrong classroom for sure, since he is a bright, sensitive kid who has so much potential to do really well. I honestly think he borders Asperger's but doesn't have the full social component. He is highly empathetic and gets subtleties in communication and language and nonverbal body language, as well as sarcasm/plays on language for humor. But, he does obsess on things, has awkward movements, and can struggle in anxiety-provoking social situations or when it just isn't what he wants to do. So really, he just isn't a clear case of anything and lands himself into the diagnosis of 'quirky' with some of this and that thrown in. Dd has an IFSP. Her only issues relate to hearing loss and her heart condition (long QT syndrome). Her development is otherwise completely typical, and strikingly different in many ways from ds's.

Assembly_Reqd · February 2014

I sent you a PM.......Well added to our previous PM discussions.....

Have you been to genetics?

st.augbride · February 2014

Thanks for the contact. Yes, we met with genetics. We're being tested for LQTS and also Jervell and Lange-Nielsen syndrome first given the deafness and lqts. If she ends up only being positive for lqts and not JLNS (which is what I'm hoping for of course), then they will test for other causes of hearing loss. I hate how slow genetics is...

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Advice needed on school situation for two differing needs and thoughts on ds

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