Talking with your teens about their disabilities

[Hilltopmom]

My dd turns 13 this week.

 

She has always struggled academically & socially in some ways too. She also deals with depression & an eating disorder.

 

Recent testing revealed a lot of things- we should've done an eval years ago.

I'm a former special Ed teacher & have always just adapted or modified her work as needed.

 

We're waiting to get into neuropsych for a full eval.

But her Ed psych eval showed a borderline IQ & huge problems with memory & processing speed. (The wm & ps Not surprising to me after working with her all these years, but the low IQ was a blow to me, I had no idea)

 

Her older brother is starting to look at engineering schools & doing a pretty intense college prep program & robotics teams & summer engineering programs- things like that.

Not comparing them, just mentioning it because now she is starting to ask about college & her future.

 

She KNOWS she struggles much more than her friends, she understands that her peers are doing things like reading The Hunger Games series in a week & starting Algebra, while she struggles with double digit addition:(

Socially she has had some difficulties over missing social cues with her friends but most of them are used to her quirks & it's fine. There has been some teasing in our homeschool groups about her using books on tape, Grrr.

 

She's into typical teen pursuits- make up, Dr. who, SuperNatural TV shows. Audio books of popular series have been a life saver!

She loves Art and has started drawing or painting daily & started dance classes last year (although it's a fine balance with those & an eating disorder) which she enjoys.

 

We've always gone with the explanation of "everyone learns things differently & in different ways" & have explained about learning disabilities making things like math & reading harder for her, so that's why we adapt things.

 

But it's hard as she gets older- it's getting more obvious- co op & 4 H classes are starting to be more academic & difficult to modify if I'm not the teacher. (Except All the art ones I'm teaching this year)

 

She's bummed out by doing "baby" work for school (her term) & wants to talk about college plans. But then can't work for more than 15 minutes with fatiguing or melting down.

She specifically asked for more life skills math & activities this year, so we're doing them with typical stuff as well.

I'm not sure what the future holds for her... We talk about vo tech options, community college... She'll need to come a long way to be able to do that.

She's not low functioning enough to qualify for programs for people with ID, but low enough to probably need some support down the road.

 

I'm hoping we'll have more info after a full eval.

How have you broached this subject with your older kids with disabilities? Who are able to "get" the fact that they can't do what their peers can?

It's heartbreaking.

[PeterPan]

You might look at some of Ben Foss' videos on youtube.  He has some where he demonstrates ear-reading and suggests that we normalize it and make it HIP.  There might be room for you to spin it that way with her.  She might need to meet others who ear read or work on improving her ear reading speed.

 

Hopefully you can find a socially appropriate way to educate the kids at the co-op about their attitudes, because I'm guessing smacking 'em all upside the head wouldn't be right.   ;)

 

Christine Reeve has a bunch of math materials that might interest you at her Autism Classroom store on TeachersPayTeachers.  They have age-appropriate ways to work on 2 digit addition/subtraction.  Seriously.  This is not just a problem she has.  It's common, and Christine's materials are FABULOUS.  I love everything from there I've bought, and it's always super cheap ($4, etc.).

 

My dd didn't become a human till 14.  She might have puberty aggravating it.  Feed her more, get her more sleep.  It definitely sounds like she'd like to explore some careers, shadow, try some things, see what might fit her.  She might be having some anxiety about it.  You could go online career testing together!  There was one place we used for an online test where they popped out suggested options with tabs for each level of education.  So then she coudl see, ok with a high school diploma, this is what might fit me, etc.

 

 

Edited December 8, 2015 by OhElizabeth

[Hilltopmom]

We live in such a rural area, is the other problem, not a lot available even for public schooled kids with disabilities.

I will ask around more though. I'm not sure how she'd fit in there either.

 

Yes, puberty is definately making everything worse. The depression, anxiety, anorexia all started within months of getting her period. Oh, & her iron level just came back ridiculously low, so hoping supplementation will bring that up & help with energy levels, since she's already sleeping 10-12 hours a night.

 

Wait, I can't smack the kids at co op? Trust me, we had a big pow wow about it with the moms & talks with the kids.

 

We're doing the Christine Reeve Xmas shopping pack this week- I saw your recommendation last week. I'm ordering a few of her other ones too, good stuff. She sort of likes it, but it is just what she asked for:)

 

Thanks.

[kbutton]

No direct experience, but I'm watching friends go through some of the same stuff.

 

A couple of thoughts--our local board of DD goes not just by straight numbers for IQ, but with adaptive functioning (make sure you comment on what it really means--level of support you provide for daily tasks, etc.). They also get bumped up if there are multiple things going on. The eating disorder might help qualify for something under mental health. Also google eating disorders and females with spectrum diagnoses. It's been suggested that many females with eating disorders may be on the autism spectrum somewhere and often go undiagnosed. Also, with social issues, you might be able to qualify under the PDD-NOS label, which is usually put together with autism. It's also my understanding that you must be a squeaky wheel to get services for ID, borderline or not. You must continue to ask, get testing, document difficulties, etc. until someone will listen.

 

:grouphug:

 

[Hilltopmom]

I actually checked out our local Boces life skills program for grades 9&10. I used to have students in it & wanted to see what it is like currently & happened to run into a staff member recently.

 

I feel atrocious saying this but my first thought was "my kid is not THAT disabled", even though technically, I think she probably IS academically close to the typical student there. The other kids "looked" developmentally disabled, kwim.

 

I think she'd be shocked & upset if she knew that a class like that is appropriate for her. She doesn't think of herself that way, I'm sure, even though she knows she struggles.

 

I'm having a really hard time putting into words what I'm trying to say & I know I'm sounding really judgmental, I'm sorry.

[PeterPan]

It's hard to be humble enough to receive help.  What gets me is when kids with technically more severe labels are more *functional* than my ds.  Then I go ok, I might have the ideals, but they have the climate.  (Ninochka)  But truly, that's the reality check for me.  Like Lecka would talk about how her kid can go in a store and have expected behavior but mine can't.  

 

Maybe with her mix she needs a blend.  A high percentage (I've heard different numbers, 40%, more) of kids with ASD also have ID.  So to go get services for your ASD dc who is gifted feels really funny honestly.  You have to be really humble and go hang with a crowd that maybe, in theory, isn't exactly the same, because they're getting the services for FUNCTION that you need.  And, I'm finding that when we get there, people make it work.  They go ok, need the skills, have the holes, and they just tweak their expectations for the increased cognitive ability.  

 

I have no clue if that carries over to your situation, sorry.  That's just how it is with us when we go to the ASD charter.  BIG spread in IQ scores, but they all have these skill goals, meaning it's the right place to be.

[kbutton]

I actually checked out our local Boces life skills program for grades 9&10. I used to have students in it & wanted to see what it is like currently & happened to run into a staff member recently.

 

I feel atrocious saying this but my first thought was "my kid is not THAT disabled", even though technically, I think she probably IS academically close to the typical student there. The other kids "looked" developmentally disabled, kwim.

 

I think she'd be shocked & upset if she knew that a class like that is appropriate for her. She doesn't think of herself that way, I'm sure, even though she knows she struggles.

 

I'm having a really hard time putting into words what I'm trying to say & I know I'm sounding really judgmental, I'm sorry.

 

:grouphug:  :grouphug:  :grouphug:

 

This could be a social thing with 9th and 10th graders--there is a range of expected social maturity at certain ages across the population (think Jr. High), and when you throw disabilities in the mix, that timeframe is stretched out a bit. For example, my son is expected to be 3 years behind socially because of his autism, and that takes his IQ into account (he's also very high IQ like OhElizabeth's son). 

 

You've been able to work with her at home to get her where she is--many of the students in this class may not have family that can be as involved even when they want to be because of work or other constraints.  

 

I think your response is a pretty normal grief response. We have a SN support group at our church, and I've found a lot of camaraderie and answers there. It takes time. 

[Lecka]

This has been hard for me, too.

 

My son has verbal speech, he has had verbal speech for a long, long time. Since he was 2. (So, yeah, delayed, but not so much.)

 

Well, he has always had verbal speech!

 

I used to think verbal speech was always going to be better than whatever kids do with a communication device.

 

Well, I was pretty sad and regretful when I found out that some kids using communication devices had much higher language levels than my son. Had greater grasps of many concepts, were using more complex sentence structures, etc. etc.

 

These kids do not *look* like they will. My son is talking! You know what I mean?

 

Then I have been surprised even recently, a girl we know who appears to be very, very delayed in various ways that my son happens to be very good at.... she is grade-level in reading and math!!!!!!!!! I was talking to her dad and her dad was like "of course she reads, our trouble is getting her ot read on her own at home." I was like "no way, I had no idea."

 

We also know a boy who has really, really good-sounding speech. His speech sounds so normal! He has great conversations starters! I used to look at this boy and think "why can't my son be more like him" (just a little bit). I talked to his mom, and it turns out he is really, really far behind my son in many areas. They have been working for years and he is not grasping basic sorting. But he talks great! It turns out he has memorized some of his conversation openers that sound so good. I still like him and I think he is charming, etc, but knowing more about him, I don't feel like "I wish my son was more like him, b/c of how good his speech sounds."

 

There was also another little boy at pre-school, that was *always* better behaved than my son. *Always.* I can't stress this enough. He was an amiable little boy, and he wanted to do a good job. He had some very minor behavior issues (compared to my son). Same diagnosis as my son. At pre-school graduation, he sat in his little chair and wore his graduation cap (made of construction paper! so cute!) and took his diploma from the teacher and his gift. So cute! So well-behaved! So perfect! To say my son appeared like he was much worse off than this kid, I can't emphasize it enough. Well, I talked to his mom one day. Her son had a vocabulary of 70 words. (This was like -- words that he used functionally and expressively etc.----- I am sure his receptive vocabulary was much higher.) They were teaching him every word (or through therapy, same general therapy as my son, also a military family). He was not learning new vocabulary words from the environment. I said I did not know how many words my son knew. I asked his therapist. She did not know either, but she looked into it, and she estimated my son had a vocabulary of 2,000 words. He was learning new words from the environment, not only from direct instruction.

 

So, anyway, there are a lot of shocks.

 

Some kids look impaired, or have certain behaviors/characteristics that make them seem like they would be impaired. But then come to find out, they have some high skills and abilities in some areas. They have things they are good at, or strengths, or they have things they have worked on a lot.

 

It takes a long time to figure out.

 

Now I am just very open (or try to be), to what child might be nervous around people but do various things at home or around trusted/known people, or what child has some characteristic "atypical" behaviors but also has very good skills in addition to the "atypical" behaviors, and what child might come across very well (good speech, no obvious "atypical" behaviors) but turns out to have a lot more challenges than I thought at first glimpse (for this child, and one more ---- I used to wonder why they were even in the same program as my son ----- they came across to me like they shouldn't even be in his same program ----- over time now I do get it, they are just very good a the things that are my son's greatest weaknesses and so I am very attuned to those things).

 

Anyway, all those kids, if you got to know them, would have personalities, likes and dislikes, silly things, serious things, etc.

 

I have been very put off by some kids and then found out that with just a bit of time they seem like just regular kids with personalities and likes and dislikes.

 

My son has some very, very obvious things about him (he talks funny, like something about his voice sounds funny, and he has obvious behaviors that are typical of autism but are also not actually disruptive or harmful in any way). He also has a lot of really good skills. He is also delayed in various ways. He is also doing grade-level math right now.

 

If you saw him in one situation, you would never guess he was also a child who is in a 1st grade classroom, doing 1st grade math, and answering questions correctly when called on by the teacher.

 

But, it turns out he is.

 

Things are just unexpected like that.

 

Anyway ---- this was a hard thing for me, too. In pre-school I felt competitive with other parents. In elementary school I did not feel competitive anymore, but I was (and am) curious about the other kids. I like the older kids my son is with in his resource room program (right now he is in the resource room for about 2 hours a day and in the regular room with an aide the rest of the time). I have been around them and gotten to know them a little. It goes a lot further than a first impression.

 

I know what you mean about first impressions, though. Some kids make a very poor first impression and look very obvious. But that does not mean there is not more to them than that. But I really know what you mean.

 

But ime if you are around kids a little and get to know them more, it does not remain at the first impression level. It really does not. You also find out there can be more to some kids than you ever thought from the first impression.

[Lecka]

Separately, my son is younger and does not appear to have any awareness that he is different from other kids. So we are just not at this stage yet, I do not know about it.

 

I just know what you mean about some kids looking very developmentally delayed.

 

But here is another thing ---- if you saw them with their parents or out with their family, they would also just look like part of the group very likely. You would see that there parents don't see them like they are delayed like it is the first thing to notice. Seeing that helps a lot, too.

[Hilltopmom]

I want to smack myself for feeling like this.

We also have a 7 year old severly disabled kiddo (non verbal, non mobile, trach, seizure disorder, newborn developmental levels), so I should know better.

 

It is grief, I think, it is. This is still new info to us.

 

I see my girl who struggles academically, but loves art & is TAing a preschool dance class this year & doing awesome but I just can't yet picture her as an adult... And my dreams for her are feeling so skewed now from what may be reality. I know she's only just turning 13 & we have a long time still, but...

 

We Foster & have adopted several of our kids from foster care & I just keep thinking over & over that most of our kid's birth moms weren't bad people or neglectful on purpose, they were young girls with borderline IQ, too high to qualify for services, but unable to make good, safe decisions. Which scares the heck out of me for my daughter. Yes, she has much more support than they did, but I now so easily see how it can go down that way.

 

Sorry, starting to meander in my thoughts here...

[Hilltopmom]

i need a crystal ball, obviously, since thinking about the future is freaking me out

[Lecka]

It will be okay! She is the same child she has always been, and she DOES have support.

 

But, you know, grieving happens, don't feel bad about grieving, either.

Edited December 9, 2015 by Lecka

[Hilltopmom]

For a really long time, I've been in the "she'll catch up eventually" camp & now it's finally sinking in that "oh, probably not"

[Lecka]

Well, some things may not happen. But, don't lose sight of things she does have going for her. The pre-school class sounds very, very positive to me.

 

But, yeah, it is important at a certain point to be optimistically realistic, but still realistic, but that means trying to look at things clear-eyed. Not fun!

 

But you don't have to look at things clear-eyed all the time. You can just look at things clear-eyed sometimes, and the rest of the time, it is not something you need to focus on all the time. You can just do stuff as if it doesn't matter.

Edited December 9, 2015 by Lecka

[Hilltopmom]

That is EXCELLENT advice! Thank you:)

[Lecka]

Ime, planning for and starting to do the things that mean "it is official now, we are really going this direction" is very hard. Once it is just -- okay, this is our routine, this is what we are doing now ----- it is really much easier. Much, much easier. Then things come up, yes, but it is not constant. During the "planning and preparing for and figuring out what to do differently" stage ---- it is the hardest part.

 

So, I think it will honestly be easier once you are doing whatever seems most appropriate. Maybe you will appreciate that it is a better fit, maybe it will have positives, etc.

 

But regardless ---- it is easier just to be out of the decision-making stage for a while! Making decisions is hard! Acting on them -- it is just not as hard, the mental aspect is just not there in the same way.

 

Things get easier with the passage of time, too, as the information quits being so new, and new things happen that take up more mental space again.

 

I mean, with ups and downs, but I do think it will get easier mentally, too, overall.

Edited December 9, 2015 by Lecka

[lauranc]

For a really long time, I've been in the "she'll catch up eventually" camp & now it's finally sinking in that "oh, probably not"

 

This was me as well.  My daughter is now 16, and it wasn't until she was 12 that we got the mild ID diagnosis-- and she was just recently diagnosed with also having ASD. Until she was 12 I just thought she had learning disabilites and some kind of speech delay.  No.. what it was was ASD and mild ID.  Not really going to 'catch up' as I had hoped.

 

It's tough to hear and it took me some time to really get my head around what it all meant.  You're not alone!

 

Hang in there..

 

[Lecka]

I also have a healthy attitude of "okay, you people who think that labels will cause parents to have an inappropriately lowered, depressed, or negative impression/relationship with their children, here I am to prove you wrong!"

 

Come at me, I will prove you wrong, pow!

[Hilltopmom]

This was me as well. My daughter is now 16, and it wasn't until she was 12 that we got the mild ID diagnosis-- and she was just recently diagnosed with also having ASD. Until she was 12 I just thought she had learning disabilites and some kind of speech delay. No.. what it was was ASD and mild ID. Not really going to 'catch up' as I had hoped.

 

It's tough to hear and it took me some time to really get my head around what it all meant. You're not alone!

 

Hang in there..

Have you talked with your daughter about her diagnoses? Does she "know" she has mild ID & ASD or do you still just go with the "learning disabilities make it school work hard" line?

[lauranc]

Have you talked with your daughter about her diagnoses? Does she "know" she has mild ID & ASD or do you still just go with the "learning disabilities make it school work hard" line?

 

Yes, she knows.  We have described ASD as being like a huge umbrella that a lot of very different people can sit under.  This seems to make sense to her, and helps her not feel like there's something 'wrong' with her.  

 

 She has always been extremely interested in reading about special needs, and gets a lot of books from the library about various things-- so she already has a pretty healthy understanding about what kinds of struggles some people face.  And, of course, she knows her own struggles.

 

When we only had the mild ID diagnosis, we explained that for her, some things may just take a little extra time to understand ---and that she should be patient with herself.   We've been very upfront with her.

[MerryAtHope]

I'm a former special Ed teacher & have always just adapted or modified her work as needed.

 

We're waiting to get into neuropsych for a full eval.

But her Ed psych eval showed a borderline IQ & huge problems with memory & processing speed. (The wm & ps Not surprising to me after working with her all these years, but the low IQ was a blow to me, I had no idea)

 

On a slightly different note...the fact that it was such a surprise to you stands out to me. Did the Ed Psych eval take working memory and processing speed into account when considering her IQ? My understanding is that an IQ can look lower than it actually is when there are processing issues, and that the GAI needs to be applied to get an accurate picture. I would definitely ask about that if you aren't sure. My understanding is also that IQ isn't necessarily a static thing. 

 

Obviously I'm not there and don't have any way of knowing...But when a mom sees an intelligent child inside and finds a test result surprising, I think it's worth asking questions, getting more feedback or a second opinion, and making sure that you really are getting an accurate picture. I'm sure you'll know more when you have a more complete eval. done.

[Hilltopmom]

On a slightly different note...the fact that it was such a surprise to you stands out to me. Did the Ed Psych eval take working memory and processing speed into account when considering her IQ? My understanding is that an IQ can look lower than it actually is when there are processing issues, and that the GAI needs to be applied to get an accurate picture. I would definitely ask about that if you aren't sure. My understanding is also that IQ isn't necessarily a static thing.

 

Obviously I'm not there and don't have any way of knowing...But when a mom sees an intelligent child inside and finds a test result surprising, I think it's worth asking questions, getting more feedback or a second opinion, and making sure that you really are getting an accurate picture. I'm sure you'll know more when you have a more complete eval. done.

Yeah, I need a full eval for more info, definately. The school psych actually did do a lot of extra tests that I asked her to, so I have more info than typical. GAI was very low, not sure how that was taken into account for the FSIQ, but will discuss that with neuro when we have our appt. thanks, that hadn't occured to me to question.

 

I should probably say that I had no idea she would test SO low, although I probably should've. I did know that she wasn't near average. It comes out in lots of things & always has that I think we just ignored & stuck my head in the sand about, now that I really think back. Not just academic, but daily life stuff that she just doesn't get.

[MerryAtHope]

Yeah, I need a full eval for more info, definately. The school psych actually did do a lot of extra tests that I asked her to, so I have more info than typical. GAI was very low, not sure how that was taken into account for the FSIQ, but will discuss that with neuro when we have our appt. thanks, that hadn't occured to me to question.

 

I should probably say that I had no idea she would test SO low, although I probably should've. I did know that she wasn't near average. It comes out in lots of things & always has that I think we just ignored & stuck my head in the sand about, now that I really think back. Not just academic, but daily life stuff that she just doesn't get.

 

It's so hard to see our kids struggle and we just want the best for them. So sorry that you even have to think through what implications there are and how this affects your daughter. I hope the full eval goes well and that they are able to really give you good direction in how to proceed. Wish this didn't have to be so hard!