Coping with Intellectual Disability Diagnosis

[imagine.more]

I hope none of this comes across negatively, I am just at a complete loss and need some support hopefully from some other moms whose kids have been diagnosed with Intellectual Disabilities or similar things. 

 

We had our DD's neuropsych report last week and I'm still processing it honestly. We went in because she has so many different learning difficulties we wanted to know a bit more of *why* and specifically which things are strengths and weaknesses. She's hearing impaired so we have been told it's mostly from that in the past. When we adopted her we were told she was academically behind and hearing impaired and would need a bit of help getting to the independent adult stage, i.e. she wouldn't be ready to move out right at 18. Since we were adopting her at age 12 obviously that sounded just sensible to us. 

 

She had 2 different IQ tests from school which gave a wide range and we didn't know which to believe. The first said full scale IQ of 60, the other said full scale IQ of 87. Neither was super helpful in specifics which was more important to us. 

 

Anyway, so with the neuropsych appointment they officially diagnosed her with an Intellectual Disability (Mild) because of her full-scale IQ of 69 and her low functioning on all but the gross motor skill assessments. Life skills are at about age 9, which is higher than anything else (she's 13). They also diagnosed with ADHD but we assumed that already so no big deal. Her memory is at less than the 1st percentile almost across the board (facial recognition, name recognition, and something else like patterns or something). 

 

The Intellectual Disability was a bit of a blow. Her school had assured us her 'real' IQ was 87 and she was doing just fine, just couldn't be expected to learn to read because she is hearing impaired. Turns out they gave her a short form IQ test so not as accurate? 

 

Anyway, it's not a blow so much because it's such a far fetched idea. I've spent time teaching her (or trying to) and know how impossible it's been. But I really thought we'd get some processing or dyslexia or whatever diagnoses and nothing else. Those I can remediate, kwim? In fact we've successfully been remediating her reading with Barton because her 1st school said she had dyslexia. Her reading scores have definitely improved over the last year and her working memory increased significantly which was interesting to see. 

 

But if she really does have a broader problem like intellectual disability that means I have to take off my 'fixer' hat and accept that she's never going to learn as much as our other kids. She'll never be as mature or able to hold her own in normal conversation in the family. And her odd behaviors like blurting out rude things, sharing inappropriate information, being inaccurate in almost every story she tells, and needing constant reminders about simple rules aren't really going to stop. She's not going to outgrow them :( We truly thought this was an adoption thing, a basic immaturity due to lack of life experience, even though her birth siblings don't act like her. But now we know it's just her. And that's frustrating because I see how much she struggles to make friends, learn, and function as a 12 year old. How's she going to cope with an ID as an adult? :( 

 

And how on earth do I school her knowing how far behind she'll always be? I have reading figured out but nothing else is going particularly well. Heck I don't even know how to discipline her since she doesn't seem to understand anything we explain to her. Consequences and rewards don't make much difference, and none of her behaviors are awful but they're so persistent because she doesn't understand enough to *be* disciplined. It's like disciplining a 4 year old and I hate disciplining 4 year olds when they really are 4, lol! I'm just completely flabbergasted on how to cope with this. And I feel terribly guilty for even having trouble dealing with it. How do you cope with this kind of diagnosis? Does it get better? I don't care if she needs our help forever, that's fine, but right now she's just hard to live with because of the above issues and I want to enjoy her company at least most of the time and I want her to feel the same.

[lauranc]

Hi...

We got the same diagnosis for our daughter when she was 12.5/13 yrs old. 

 

It was a blow.  I had always kind of assumed she had a learning disability of some kind (maybe multiple kinds)--- and figured she would be able to 'overcome' or 'catch up'.   It was tough to hear that, instead, she had mild ID.

 

 

After the diagnosis, I was able to take a very different look at my daughter's educational needs; and I started to take a very long view of everything.  I began to really look at what she needed to be able to function in the real world.  What did she absolutely need to know.

 

I searched for math curriculum that worked for her (I can link if you'd like), focused in on writing skills, reading comprehension, life skills etc...  

 

She loves animals, so we have done a couple of years of science based around animals.  I am starting to see what kind of work she might be capable of doing (even if just volunteer).  Soon after the diagnosis, I formed a girls group with similar girls so she could have friends--- she has started in a social skills class that is really good etc.. etc..   

 

I gave myself some time to get my head around what was in front of us, and then just kind of moved forward.    You will find yourself doing the same thing, I'm sure. (-:

 

PM me if you'd like me to link anything that has worked for her. 

 

Hang in there!

Laura

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

 

You will find friends and hopefully help here.  Give yourself time to process and to connect with others.

 

Best wishes always.

[EndOfOrdinary]

I will not pretend to understand what you are going through, but I do know what it is like to feel overwhelmed by the special needs of your child (though my son's are different).

 

What I can tell you is that it is okay to be scared here. The most incredible people exist on these boards and genuinely want to help if only to give you a place to blurt out all the fears however logical or illogical. So feel safe, not judged, and know that it is totally fine to have no idea what to do. That is not a place to feel guilty. That is a place of being human.

[geodob]

I particularly noted her hearing impairment, of 50% unaided, 80-90% aided.

Where I wonder when she first got a hearing aid?

 

Though what I specifically wonder about?  Is how this might have effected her development of the ability to use what is termed as our 'Inner Voice'?

Which you would no doubt be using, as you read this.  Where you can clearly hear the words as you read, without saying them out loud.

 

But this is an acquired skill, which typically we learn how to use by around the age of 8.

Where a hearing impairment could limit the development of it?

 

Though Inner Voice is used for far more than reading!

As it is fundamental to thinking.

Where we use it to talk through something in our mind.

Also to recall things from memory.

As well as to consider and regulate what we say.

 

Though the examples that you gave of: ' And her odd behaviors like blurting out rude things, sharing inappropriate information, being inaccurate in almost every story she tells, and needing constant reminders about simple rules ... '

Are typical of people without Inner Voice.

It also has a major effect on 'consequences'?

As this often involves talking through an intended action, in our mind.

If I do x, then this could happen, but that could happen as well?

 

They also tend to talk in 'streams of words', without reflecting on what they saying, or about to say.

 

So that from what you've written, I wonder about her ability to use her Inner Voice?

Which if she hasn't fully learned how to use?

Would effect her ability to do many of tests, that arrived at her IQ.

Yet this would give a wrong conclusion, about the underlying 'cognitive abilities' ?

 

Historically, being 'profoundly hard of hearing'/ Deaf,

Was also defined as 'Mental Retardation', with a very low IQ.

As people born Deaf, of course couldn't develop an Inner Voice, not having ever heard sounds/ words.

So that they had no way to think through something, in their mind?

 

But the development of Sign Language around a 100 years ago.

Enabled the development of 'Inner Sign', to use as a process for thinking.

Where I have read accounts of Deaf people when Sign Language was first introduced.

Who proclaimed that what this has provided them with?

Is not just an ability to communicate, but also a 'way to Think'.

A method of thinking.

 

So that I am wondering if Inner Voice could be a significant factor?

[Ottakee]

 

 

But if she really does have a broader problem like intellectual disability that means I have to take off my 'fixer' hat and accept that she's never going to learn as much as our other kids. She'll never be as mature or able to hold her own in normal conversation in the family. And her odd behaviors like blurting out rude things, sharing inappropriate information, being inaccurate in almost every story she tells, and needing constant reminders about simple rules aren't really going to stop. She's not going to outgrow them :( We truly thought this was an adoption thing, a basic immaturity due to lack of life experience, even though her birth siblings don't act like her. But now we know it's just her. And that's frustrating because I see how much she struggles to make friends, learn, and function as a 12 year old. How's she going to cope with an ID as an adult? :(

 

And how on earth do I school her knowing how far behind she'll always be? I have reading figured out but nothing else is going particularly well. Heck I don't even know how to discipline her since she doesn't seem to understand anything we explain to her. Consequences and rewards don't make much difference, and none of her behaviors are awful but they're so persistent because she doesn't understand enough to *be* disciplined. It's like disciplining a 4 year old and I hate disciplining 4 year olds when they really are 4, lol! I'm just completely flabbergasted on how to cope with this. And I feel terribly guilty for even having trouble dealing with it. How do you cope with this kind of diagnosis? Does it get better? I don't care if she needs our help forever, that's fine, but right now she's just hard to live with because of the above issues and I want to enjoy her company at least most of the time and I want her to feel the same.

Manda---welcome.  I have been there, done that.  I am adoptive mom to 3.

 

Ds came at age 7 1/2.  We knew at that point he had FAS and an IQ of 55.  That has stayed stable all along.  He struggles with math (about a 1st grade level), time, and reading (about a 3/4th grade level) but is a wiz with hands on things, tools, computers, using the internet, etc.  He has great social skills and often casual acquaintances don't realize how impaired he is.  He lives with us and will never drive.  He has had a part time job and is a great volunteer at the church thrift store.

 

DD1 came at 7 1/2 months old.  Like Kinsa, she did OK until 2-3 when we started speech therapy, etc.  By 5 we knew we were dealing with more.  She has IQ scores from 38-68 but reality is about 55-60.  She can do basic math and understands time and money much better than her brother (not bio related).  She reads about a 3/4th grade level and can use the internet, facebook, etc. to do whatever she wants to do.  She has a severe stuttering problem and a host of other medical conditions.  She is currently in public school in a special education program for those with cognitive impairments and loves it and is doing very well there.

 

DD2 came at 2 days old.  Full bio sister to DD1.  She falls with an IQ of 75-80 or so.  She is doing 5th grade work or so across the board and is in a program for kids with higher IQ/Severe LDs, etc. at the highschool.  She might live on her own, drive later, etc. but not right now.

 

There IS hope.  Some of what you mention above might really be partly adoption issues.  I wouldn't say that she will never learn to follow the rules, be more appropriate, etc.  Social skills are not nec. dependent on IQ.

 

I have to leave soon but I would encourage you to work with your adoption agency (assuming she was foster/adopt) to get her qualified for any and all services she might qualify for.  Medicaid, respite (paid babysitter for her), counseling, medical subsidy, support subsidy, SSI disability (either now or if she gets a higher adoption subsidy then when she turns 18 or 19).

 

We found that public school in our area offered a great deal for our kids and gave them a "peer group" we just couldn't duplicate in the homeschool world---which is why we moved from homeschooling to public school for each of them in 7th grade.  They also do Special Olympics and other activites as well as regular teen things like youth group, etc.

 

Ask away and I will try to answer more later.  It is a grieving process but there is also great hope.............and I hate to seem happy about her score of 69 but I can tell you that with a score of 69 you have access to a lot more services and opportunities for her than you do if the score came back at 71..........even though she is the same child no matter what the number says. 

[kbutton]

I just want to chime in and say that I appreciate you ladies sharing your stories--I've seen you all post before, but not always in such detail. It's nice to hear about your kids and your stories.

 

I have a friend that needs to hear this kind of stuff right now. 

 

:grouphug: OP--I frequent this board but have a totally different set of issues with my kids. Best wishes as you navigate all of this and find a way to enjoy your daughter.

[KSinNS]

Hugs!

 

Jean Vanier's Becoming Human got me through some of the rougher stages of the grief of diagnosis. It takes time to mourn the struggles your child will have, and to mourn the dreams you had for them. Give yourself that time. But also know that it does pass. 

[Plink]

More hugs. Finding out was the worst part of this journey.

 

What made the most impact on me at that stage was advice from our neuropsych to make a list of all the things DD does well. Cooking eggs, telling stories, taking care of animals, dusting - it was an eclectic list, but it helped me to put things in perspective. Everyone has something they are good at. At his advice, this became our "build upon" list. We intentionally focus part of each school day focused on encouraging her strengths. It gives both of us the emotional boost we need to continue on with the more difficult/repetitive learning necessary in other subjects.

[imagine.more]

Okay, it's morning.  I'm ready.  Get set.  Go!  :D

 

Last night as I was lying in bed, I read your post to my husband.  He just nodded knowingly.  Congratulations - you've been thrust into a brand new world that you probably never thought you'd be in, just like the rest of us.  (Have you ever read the awesome essay, "Welcome to Holland"?  If not, go read it now.)  Yet, we've all managed to figure out how to live in this new world, and not just survive but thrive in it - and you will too.  :grouphug:

 

No, you can't "fix" your child's "problem", and that's a hard pill to swallow.  It is hard to accept the diagnosis, but it sounds like you are well on your way.

 

Are you familiar with the five stages of grief?  I don't know how many people are aware of it, but when your child receives a life-altering diagnosis, we moms (and dads) do indeed go through the five stages of grief.  I can tell you what that looked like for me, but first I need to tell you our story:

 

My 11yo son was pretty much "normal" as a baby and toddler, meeting all his milestones pretty much on cue.  But as he inched toward the age of two, his speech wasn't where it should be.  So we got him into early intervention speech therapy as well as occupational therapy for fine motor skills.  I didn't think it was a big deal because his two oldest brothers had to have speech therapy when they were little guys, and they turned out fine.

 

When he aged out of the EIP, he started to receive ST/OT at the public school, from ages 3-5.  Then it was time to start kindergarten with him.

 

Since we were already a "homeschooling family", we "withdrew" him from the public school to homeschool his kindergarten year, even though he still qualified to receive ST/OT services at the school.

 

Well, about six weeks into his kindergarten year, I could tell that nothing was "sticking", know what I mean?  So I just assumed he was a "late bloomer" - just as all the well-meaning grandparents and friends said - and shelved the curriculum until the following year.  I figured it would give him time to mature intellectually and perhaps in one more year he'd be ready.

 

Except he wasn't ready.  We tried kindergarten again a second year, and when it was a bust yet again, I started to figure something was up.  After all, I had already taught kindergarten to four other children, so I knew it wasn't ME that was the problem.  And all the other kids picked up on letter sounds and numbers so easily.  What was going on with this kid?

 

I suspected dyslexia or something like that.  So at his next well-check, I told the doctor what was going on, and he gave us a referral to the developmental pediatrician, who set us up for testing... and the ball was rolling.

 

At the age of 8 years old, we received the diagnosis of mild mental retardation, full scale IQ = 60.

 

Now (if you're still reading all this - LOL) this is where I started the grieving process.

 

For the first few days, I was in denial, the first stage of grief.  I was just SURE that the psychologist was *WRONG*.  She didn't test him right.  She messed up somewhere, somehow.  There was no way his problems were MR.  She just didn't like us, and so she slapped a label on him.  On and on and on.

 

Then, I started the second stage of grief:  anger.  I wasn't angry in the sense of being mad.  No, my anger took the form of frustrated crying.  I was angry at God for "doing this to me".  I was even a little bit angry at my husband for passing on this genetic flaw (after all, it couldn't have come from MY genes - LOL).  But I did a lot of crying for about a week or so.

 

Then I started to focus my energy and thoughts on "fixing" the problem - the third stage of grief (bargaining).  I think I spent a few months in this stage:  If only I could add the right diet supplements, maybe he could be okay.  If only I could get him into a "brain training center", maybe he could be okay.  If only I could do the right remedial tricks with him at home, maybe he could be okay.  I spent a lot of time and effort researching dietary "cures", brain training "cures", and other tricks that I was just SURE would make a difference.  Except they didn't.  And they don't.

 

Once I figured out that there was *NOTHING I COULD DO* to "fix" him, then I moved into the fourth stage of grief: depression.  No, I wasn't clinically depressed to the point of needing medication.  This stage is more of a sad regret, or a lament about the future, or a feeling of loneliness or isolation.  This is where it sounds like you are in the process, perhaps?  I spent about a year in this stage.

 

But then, almost magically, I came to the last stage of grief:  acceptance.  And it's a nice place to be.  I learned that he doesn't need to be "fixed".  He's... dare I say it?... OKAY.  His life is going to look different than most other people's, but he's going to have a fulfilling life nonetheless.

 

I think part of what helped me move forward was talking with my mother.  She happens to have retired from working for the ARC long before we knew what was going on with my son.  She had worked with people like him for years, and she was able to assure me that he will be fine.

 

His life won't look like what we always envisioned it to be, but it will be similar in many ways.  He will have friends, but his friends will be like him once he finds his "tribe".  He will have a romantic life, possibly even getting married some day.  He will be able to live independently, as long as someone keeps an eye on him.  He will be able to be employed, even though he might need government assistance in finding and keeping that employment.

 

But I'm getting ahead of myself.  Let's talk about the HERE and NOW.

 

Once we got our son's diagnosis and the report from the psychologist with recommendations on it (written for school personnel, not for me - but as a homeschooling mom, I took it and ran with it), I was able to fashion an education plan for him.  Two of the most useful key points on the report were to make heavy use of REPETITION and MNEMONICS.  Armed with that knowledge, I sought out curriculum that was written for an intellectually disabled person and which used these two strategies.  I settled in on these basic subject curricula:

 

Language Arts:  Stevenson Reading     http://www.stevensonlearning.com/stevenson-reading

 

Mathematics:  Semple Math     http://www.semplemath.com/

 

Handwriting:  Handwriting Without Tears   http://hwtears.com/hwt

 

(We use HWoT because that's what his OT uses with him.  Also note that Stevenson and Semple used to be the same company, but they split into two separate entities a few years back.  But their teaching strategies are basically the same.)

 

In a way, it is freeing to be able to just work at his pace.  We are freed from expectations.  If I can get him to an upper elementary level in reading, math, and have legible handwriting, then I've done a pretty good job.  Ultimately, his cognitive level will only be at a normal 9-12 year old, so that's where we are aiming.  Anything above that is icing on the cake.

 

Since our homeschooling is finally making some progress (he is starting to read, and he can now add fairly well), I've added a few more things to his curriculum.  I discussed it in this thread:  http://forums.welltrainedmind.com/topic/528111-for-kinsa/

 

Looking forward:

 

It is highly possible that he will be able to attend college someday.  Yes, it's true!  This is a wonderful resource:  http://www.thinkcollege.net/

 

The older the child gets, the more pronounced the intellectual differences will become compared to his agemates.  This is why it is SO important for teens with MR to "find their tribe".  I suggest getting connected with your local ARC and sitting down with a case worker.  He or she can help get your daughter hooked in to the special needs community.  In our city, there are special "teen nights" for our kids, summer camps, movie nights, festivals... heck, here we're even home of Morgan's Wonderland, the only theme park in the country devoted entirely to the special needs community.  I have found an ABUNDANT amount of opportunities for my son, but I found them by first getting plugged in with the ARC and sitting down with a case worker and getting on their email list.  Special Olympics, Abilities Expo, even the United Methodist Churches - those are all ways to get connected and find resources in your area.  (The UMC has a national ministry for special needs children and adults.  Many times, local churches carry out those ministries.)

 

Okay, I know that a lot of this post is about our particular situation, but I just wanted to let you know that you are traveling down a road that many of us have already trodden.  You aren't alone in this.  There is hope for a bright future for your daughter.  It is likely very different than what you initially thought it would be, but she will be happy and fulfilled.  :grouphug:

 

Karen, thank you for sharing your experience. Yes, I'm solidly in the Depression phase of the grieving process. When she moved in and we started realizing things like the fact that she couldn't read, that she didn't know where babies come from or that all people die, etc. we were in denial. We were convinced this was just adoption stuff and hearing stuff and could be overcome. So then I was angry. Angry at her birth family for not taking care of her, angry at everyone for not realizing she was so behind for years, and very angry at the school for treating her like a second class citizen. Then I tried to fix and fix and fix. I have spent the last year agonizing over her education, trying all sorts of things to help her. But we were still at a loss in many ways. So we did the testing. And that's why with the diagnosis I'm straight into Depression phase. I'm naturally a bit glass-half-empty anyway so this will probably be my hard stage to get out of. 

 

The ID becoming more pronounced as she gets older is definitely what I'm seeing. She used to have lots of little friends at school, some younger but no big deal. Now all her friends are outgrowing her. Even the 9 year olds think she's immature. The kids her age ignore her a lot, they aren't mean and often they'll accept her invitations to play but they never invite her over and more often they politely decline her invitations. I really want her to have friends on her level but I also don't think it's appropriate for her to be BFF's with 5 year olds. She hit puberty 4 years ago, she wears bras, she likes boys, all normal 13 year old girl things! And those aren't appropriate topics for a 5-6 year old friend. I want her to have friends her age that are also on her level. But our area is super small! Like insanely small! We do have special olympics but DH thinks that's for more severely disabled kids. I actually think it might be a good fit for her. 

 

The repetition is something big that was emphasized by our neuropsychs too. It kinda feels like it'll be groundhog day around here. One reason I hated school myself was because I found the repetition monotonous and demeaning. So to think of doing that in my home in a way that doesn't do those things is challenging. I'm going to have to chat with my evaluator about the homeschool requirements too because in PA we have a lot of specific requirements and it freaks me out with Ana because her curriculum won't look like a normal 6th grade curriculum at all. 

 

I'm actually currently thinking maybe I should homeschool her through 8th grade, get her reading up to a decent level, and then find a good special needs high school placement for her at the local school or at a private school. Maybe that would help her find friends? Our homeschool community is tiny as is, trying to also find other homeschoolers with ID is like finding a needle in a  haystack, lol!

[imagine.more]

Manda---welcome.  I have been there, done that.  I am adoptive mom to 3.

 

Ds came at age 7 1/2.  We knew at that point he had FAS and an IQ of 55.  That has stayed stable all along.  He struggles with math (about a 1st grade level), time, and reading (about a 3/4th grade level) but is a wiz with hands on things, tools, computers, using the internet, etc.  He has great social skills and often casual acquaintances don't realize how impaired he is.  He lives with us and will never drive.  He has had a part time job and is a great volunteer at the church thrift store.

 

DD1 came at 7 1/2 months old.  Like Kinsa, she did OK until 2-3 when we started speech therapy, etc.  By 5 we knew we were dealing with more.  She has IQ scores from 38-68 but reality is about 55-60.  She can do basic math and understands time and money much better than her brother (not bio related).  She reads about a 3/4th grade level and can use the internet, facebook, etc. to do whatever she wants to do.  She has a severe stuttering problem and a host of other medical conditions.  She is currently in public school in a special education program for those with cognitive impairments and loves it and is doing very well there.

 

DD2 came at 2 days old.  Full bio sister to DD1.  She falls with an IQ of 75-80 or so.  She is doing 5th grade work or so across the board and is in a program for kids with higher IQ/Severe LDs, etc. at the highschool.  She might live on her own, drive later, etc. but not right now.

 

There IS hope.  Some of what you mention above might really be partly adoption issues.  I wouldn't say that she will never learn to follow the rules, be more appropriate, etc.  Social skills are not nec. dependent on IQ.

 

I have to leave soon but I would encourage you to work with your adoption agency (assuming she was foster/adopt) to get her qualified for any and all services she might qualify for.  Medicaid, respite (paid babysitter for her), counseling, medical subsidy, support subsidy, SSI disability (either now or if she gets a higher adoption subsidy then when she turns 18 or 19).

 

We found that public school in our area offered a great deal for our kids and gave them a "peer group" we just couldn't duplicate in the homeschool world---which is why we moved from homeschooling to public school for each of them in 7th grade.  They also do Special Olympics and other activites as well as regular teen things like youth group, etc.

 

Ask away and I will try to answer more later.  It is a grieving process but there is also great hope.............and I hate to seem happy about her score of 69 but I can tell you that with a score of 69 you have access to a lot more services and opportunities for her than you do if the score came back at 71..........even though she is the same child no matter what the number says. 

 

 

I totally understand the IQ of 69 actually being a good thing, I thought the same thing. If it had been a few points higher she'd still be struggling but ineligible for many services. If it had been lower we'd have fewer opportunities available to her in the future. I think she's oddly at a good point of being fairly high functioning but eligible for lots of help. The trouble is finding any help. 

 

So far we've found nothing in our area! She's been on a wait list for months for speech therapy! The public school wanted to graduate her from speech therapy entirely. Her short stint with a counselor was a bust b/c the counselor kept trying to treat her like a preteen and she didn't understand anything that was going on and just lied and said nothing. 

 

Our neuropsych wants us to do friendship coaching with her but there are no services or groups for that in our area. 

 

I do think we might look into SSI or increasing the adoption subsidy. She gets a pretty generous adoption subsidy but it's not as much as the foster care stipend was so there might be room for an increase there. She really needs different counseling than the medicaid will offer and more speech therapy because she's made almost no progress in speech over the past year. I just don't even know where to start on those things. 

[Ottakee]

! We do have special olympics but DH thinks that's for more severely disabled kids. I actually think it might be a good fit for her. 

 

 

I'm actually currently thinking maybe I should homeschool her through 8th grade, get her reading up to a decent level, and then find a good special needs high school placement for her at the local school or at a private school. Maybe that would help her find friends? Our homeschool community is tiny as is, trying to also find other homeschoolers with ID is like finding a needle in a  haystack, lol!

Special Olympics would likely be a very good fit for her.  My one with an IQ in the 80s is in it and loves it and it is a good fit for her.  It does help give them a peer group.

 

We did the homeschool through 7th grade and the public school and again, it gave them a peer group and the PS is the point person for so many services in our area that it has really worked well.   Like you said, finding older special needs homeschoolers is about impossible.

 

I would certainly look into a higher adoption subsidy and/or disability.  In Michigan we used subsidy as it was higher than disability and then after 18 they transfer to disability.  A good paper trail now makes getting disability a rather painless process (or at least as painless as it can be).

 

It is OK to grieve the lost dreams, etc.  I remember doing that several different stages along the way.

[1shortmomto4]

You have been given some great advice, encouragement and resources thus far.  I'm a mom of a hearing impaired child - although he's 21 now.  He was not diagnosed until he was 15 (long story but the loss was severe and present from birth - all the experts just ignored/missed it).  I began homeschooling him because he was struggling in school and he always struggled in school.  We started when he was half way through 4th grade (before I even knew what I was dealing with).  it is true about the grieving process but there is a grieving process for the child, too.  How long did she go without hearing aids?  This is so key in their development.  Kids stop maturing (something we saw with our ds but only through the value of hindsight) at a certain point.  The brain just shuts down and progression into adulthood stalls.  Once the issue is corrected, in this case hearing aides, it takes a long time for the brain to catch up.  Add in the dx of ADHD which also is indicative of  delayed maturity and you really have some serious issues to deal with.  Please take things one day at time.  Don't give up and think the worst.  Don't believe that she won't be able to attend college.  She's going to need a lot of help, encouragement and patience but she just might surprise you with her skills.  Over time her brain development may just catch up more than any expert will have told you.  My ds is now 21, worked super hard these 3 years at CC, taking just 12 credits.  It takes a lot of out of them to get through the lectures and the work.  What worked best for him were classes with hands on type assignments (computer coursework).  People assume with hearing aides that everything is all fixed and they can hear and process just like the next person (like eye glasses correct vision) but there is so much more going on in that brain with regards to hearing.  Slow and steady.  One day at a time.  I still struggle when I think about my ds' dreams that were crushed with his dx (he wanted to join the military or law enforcement) but somehow over the years he's found new goals. 

[Tokyomarie]

Hi Manda, I've been thinking about your post and have some questions and thoughts.

 

1. Your daughter has been in your home for about 15-16 months and she is pretty severely hearing impaired. Do you have any history on when she first got hearing aids? Is English her first language or does she come from another language background? Has she ever been taught any sign language?

 

With no attention to correction of her hearing impairment until late in childhood, and especially if, by chance, she comes from a different language background, it may be difficult to get a true read on her ultimate intellectual potential until she has had intensive oral language remediation.

 

2. Some earlier posts indicated that her visual and spatial scores were higher than language-based scores. Were visual/spatial scores higher than verbal scores on the neuropsych evaluation? If so, it would be appropriate to consider that her true intellectual potential may lie closer to the scores she got on the non-verbal tests, especially given her history of hearing impairment.

 

3. You mention that your dd has been on a list for speech therapy for months. What other options can you find for speech therapists? My first priority, if I were planning for this child, would be to get an excellent speech & language evaluation with a highly qualified Speech/Language Pathologist who has experience with language delays associated with hearing impairment and lack of environmental stimulation due to socioeconomic and/or cultural & linguistic influences. The type of SLP you need is probably a top-notch PhD qualified specialist in children who are similar to your daughter. If you live in an area where there are few local resources, it could be worth your while to consult with someone in a major city to help you develop a language development program to use at home if you can't get good services otherwise.

 

4. For cognitive and academic development you might consider consulting with an educational therapist who uses methods based on Reuven Feuerstein's theories of cognitive modifiability. NILD (National Institute for Learning Development) and International Renewal Institute are two organizations to check out for more information on Feuerstein's theories and methods.

 

 

It is important to allow yourself to adjust to your daughter's current reality and realize that her ultimate potential is probably much lower than that of your biological children. On the other hand, I would not take the information from this evaluation as an expectation of her highest possible future performance. It may be, but I don't think you'll be able to determine that until she's had intensive language and cognitive remediation for a period of years under your care.

 

Wishing you the best as you sort out this new information and figure out where to go with it.

[imagine.more]

Hi Manda, I've been thinking about your post and have some questions and thoughts.

 

1. Your daughter has been in your home for about 15-16 months and she is pretty severely hearing impaired. Do you have any history on when she first got hearing aids? Is English her first language or does she come from another language background? Has she ever been taught any sign language?

 

With no attention to correction of her hearing impairment until late in childhood, and especially if, by chance, she comes from a different language background, it may be difficult to get a true read on her ultimate intellectual potential until she has had intensive oral language remediation.

 

Very good questions to ask. She first got hearing aids at age 7.5 (1st/2nd grade). The doctors all say she lost her hearing sometime after birth but before age 6 because of her language level at Kindergarten, which was certainly behind but not far enough to suspect a from-birth impairment. She was raised in a bilingual spanish/english home. She knows zero spanish. None, not even counting or colors or common phrases and didn't know her own nickname was spanish for "little girl". Her grandpa speaks only Spanish and she refuses to talk to him because she gets so frustrated because she doesn't understand spanish and he doesn't believe how little she knows. Her birth mom and siblings all speak english almost exclusively, they know spanish but choose english. She was never taught any sign language. 

 

She's been in intensive speech therapy since 2nd grade and had a deaf teacher for 3 years but made minimal language progress. she was speaking like a 4 year old in 2nd/3rd grade and a 6 year old now in 6th grade. She seems to make tiny progress but then regresses really quickly and often works on the same skills all the time because she still hasn't mastered them. 

 

2. Some earlier posts indicated that her visual and spatial scores were higher than language-based scores. Were visual/spatial scores higher than verbal scores on the neuropsych evaluation? If so, it would be appropriate to consider that her true intellectual potential may lie closer to the scores she got on the non-verbal tests, especially given her history of hearing impairment.

 

Yes, her visual and spatial scores were higher, I'll have to check them to remember the exact scores but none besides gross motor were even at average in this recent neuropsychological appointment. I think her spatial approached normal but again I need to check. Her reading of nonsense words and working memory are both now approaching normal which is a huge difference from before!

 

3. You mention that your dd has been on a list for speech therapy for months. What other options can you find for speech therapists? My first priority, if I were planning for this child, would be to get an excellent speech & language evaluation with a highly qualified Speech/Language Pathologist who has experience with language delays associated with hearing impairment and lack of environmental stimulation due to socioeconomic and/or cultural & linguistic influences. The type of SLP you need is probably a top-notch PhD qualified specialist in children who are similar to your daughter. If you live in an area where there are few local resources, it could be worth your while to consult with someone in a major city to help you develop a language development program to use at home if you can't get good services otherwise.

 

Yes, ITA, I've been trying like the dickens to get this kid more quality and consistent speech therapy. The school says she qualifies for 20 minutes every 10 days. The health insurance will pay for 3x a week at a maximum but I can't find anyone within reach who has the office hours to allow for that. We live in a small city in the middle of Pennsylvania with minimal services. We're 2 hours from Pittsburgh, the nearest place with decent stuff. We are hoping to move to a larger city for her sake before high school at least but that's obviously a big thing to sort out. 

 

4. For cognitive and academic development you might consider consulting with an educational therapist who uses methods based on Reuven Feuerstein's theories of cognitive modifiability. NILD (National Institute for Learning Development) and International Renewal Institute are two organizations to check out for more information on Feuerstein's theories and methods.

 

​I've not heard about this before, I'll have to check into it. Again, we have zero resources here so it might be hard but it can't hurt to check. 

 

It is important to allow yourself to adjust to your daughter's current reality and realize that her ultimate potential is probably much lower than that of your biological children. On the other hand, I would not take the information from this evaluation as an expectation of her highest possible future performance. It may be, but I don't think you'll be able to determine that until she's had intensive language and cognitive remediation for a period of years under your care.

 

Wishing you the best as you sort out this new information and figure out where to go with it.

 

Thanks!

 

[IsabelC]

:grouphug:

 

It sounds like this is very hard for you right now.

 

Losing some of your hopes for your child and having to accept limitations on what she will be able to do causes grief, and grief is always painful. Like any kind of grief, it will never go away completely, but it will become easier over time. You will get past the stage of feeling totally overwhelmed and arrive at a place where you can, most of the time, focus on the positives and look forward to your daughter fulfilling her own unique potential, whatever that may be.

[Kat w]

Imagine more, I am so glad you posted what you did.

I always find connection and encouragement with you. Thank you for your suck sweet spirrit and honesty.

I RRALLY needed to hear about the depression stage lasting a year for you. I keep asking myself, when are you going to get out of this funk??? Lol. Ouy.

With every new round of testing it's the exact same. I expect it to be better each time, BC we already know, it's not good. But, bit the case. I go through the same 5 stages everytime .

Thanks. Validation and encouragement .