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Now that Ana, 13, has been diagnosed with intellectual disability and ADHD on top of her hearing and speech impairment I'm realizing that we have to totally re-think her future. I mean, for the first year we had her we assumed that this was a neglect/hearing/speech problem and that with the right environment, nurturing, and education she'd progress and catch up mostly and be on the low-average of abilities. I'm starting to accept the diagnosis and that she just won't ever catch up to her non-disabled peers and working to be okay with that. 

 

But it leaves me very confused about what to plan for her future so she has the best chance possible. Particularly in these areas:

 

1. Diploma: our other kids will go to college so I'm not worried about a high school diploma but if Ana can't attend college then she needs a solid, professional-looking diploma to have for employers and such. PA says they recognize homeschool diplomas issued by parents now but I don't trust that all employers will be up to date on that, kwim? We have a couple diploma agencies in PA but their requirements are such that she can't meet them. What are you all doing for your kids who would struggle to meet typical diploma requirements? Anyone with working not-college-educated young adults who could give some insight into if/what employers look for with regards to education? I just want to choose the option in freshman year that gives her the least limits in adulthood and is most appropriate for her.

 

2. Managing her expectations: she's 13 so a lot of her friends are starting to date. Normally I'd be fine with any of my high schoolers dating but she's a huge abuse risk because of her lack of awareness. She still isn't quite sure where babies come from and doesn't realize why certain clothing or behavior is inappropriate. She's very eager to please and outgoing and has zero ability to identify good people vs 'tricky' people, never mind same-age guys who would be nice vs those who would make fun of or take advantage of her. She also currently isn't allowed to walk to the park alone because of her behavior and lack of understanding, we were told by social workers to keep an eye on her like a 6 year old for her own safety. She refuses to talk to strangers in healthy situations like at the library or friends' parents. So anyway, any ideas for managing expectations of dating and cell phones and other age-appropriate teen behaviors? And ideas for how to decide when/if she's ready for some of these privileges as she gets older. I assume eventually she can handle being left home alone for an hour or two, but how to know when if age isn't a reliable indicator of her abilities?

 

And we've been told she likely can't drive so while I hope she can eventually at maybe 18 or so I also want to prepare her for the very real possibility that she can't drive. It would seem cruel to act like she will be driving in 2.5 years when odds are she won't. How can I tactfully reiterate these limits to her over the next few years so she's not disappointed? 

 

3. At what point do you say "enough is enough" with academic learning and focus more on practical life skills? Specifically in math, at what point do I drop the typical curriculum (she's in Math U See Gamma) and switch to a more special needs-oriented money and time skills curriculum? (she has zero money skills and her time telling is spotty at best) And same in other subjects, when do you say "no more grammar, time to just focus on reading and understanding in real-life situations". 

 

Sorry this is so long, just hoping to get any insights. This board has by far been the best and only place for realistic advice on learning disabilities of all kinds! I don't know anyone local with a special needs child and we're still working on getting plugged into all the local resources for kids who need extra help. 

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I don't have experience in this area, but I want to offer support! :)

 

Speaking of college though - I was just reading a blog written by a woman who has a young daughter with Down syndrome. She was feeling kind of bummed thinking that her daughter may never go to college and then... she learned about the UP program at Western Carolina University. It's for kids with intellectual disabilities, and after reading about it... it looks amazing. The campus itself is just beautiful, as well.

 

Here is the blog: http://www.kellehampton.com/2015/03/if-you-build-it-they-will-come-if-you.html

 

And here is the link to the university site: http://www.wcu.edu/academics/departments-schools-colleges/CEAP/ceap-depts/stl/special-education-programs/university-participant-up-program/

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Mainer, what a coincidence! I just read that same article :) It's part of what got me thinking even more about this stuff. And that program does sound amazing but it only accepts 4 new students each year so it'd be a long shot for Ana unless more programs opened up. It was really inspiring to see the progress we've made as a culture though! We're definitely not ruling out Community College for her if she lives at home and such, it's just definitely not a guarantee and might not be the best use of time/money depending on how much progress she makes in the next 5 years. 

 

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One thing that I'm very hopeful about is the development of self-driving cars. A bunch of companies are working on them now like Google, Tesla, Audi, BMW, Mercedes, etc. We are *SO* not the type of folks to buy a luxury vehicle for ourselves but if that's who had a self-driving car available, we'd bite the bullet.

 

For now we are (slowly) working on getting my little one used to using public transportation. It's going to take a LONG time before she can use it by herself, but by the time she's an adult, I'm hopeful that she'll be able to do so.

 

We are not dealing with ID so I don't have any advice on that. Do bear in mind that kids with disabilities are able to access services through the public schools until age 22. Our district has a program in conjunction with the local community college for students with Asperger's preparing them for college success. Students go 1-4 days/week depending on their specific challenges. There are days devoted to social skills, self-help/independent living skills, career planning/prep, and academic support. So if my DD were doing okay academically but needed help with the other areas, she'd go 3 days/week.

 

I would recommend going to talk to the local district about what services they offer for students with disabilities. There's no obligation to enroll her now (or ever) but there may be programs that would be good for her when she's an older teen.

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I am part of a local SN support group where this stuff comes up. My son is on the spectrum, but like Crimson Wife, we aren't dealing with ID either. What I've gathered from our group is that services are available in piecemeal fashion--social security, local (usually county) developmental disabilities boards, the schools, etc. You might not get all the available information unless you work all your options simultaneously. There is a lot of the left hand not knowing what the right hand is doing (or knows, but won't tell). Finding other parents is great; finding a support group is even better--they often pool their information, host events, and educate members about a lot of these things. 

 

You might check out rehabilitative driving courses to see if anyone can help you figure out if your daughter will be able to drive or not. I am not sure where to look, but they are usually taught by occupational therapists with specialized training. Some of this is aimed more at the elderly or those who have had permanent injuries, but it might be a source for you as well.

 

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Here is what we are doing for DD (nearly 16):

 

This year (9th grade) I gave up on 'regular' math curriculum to focus solely on functional math.  I bought Explore Math and Explore Math 2 from Attainment Company (would link, but their site is telling me that it's down right now).  Best decision I made this year.  All of the math is based around a 'story' or word problem that she might encounter in real life. 

 

She also uses Times Tables the Fun Way and Addition the Fun Way workbooks every day for review. 

 

My plan for math is to continue with review of basic computation and add in, each year, more functional math until she feels very confident with applying math and thinking mathematically.

 

I am finding that the older she gets, the more she is understanding (basic math) and I'm starting to see that  someday down the road she may  be ok with regards to math in the real world.  (even if she needs some reminders or help... I no longer feel like she'll never get it)

 

 

 

 

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Long term planning is hard and I applaud you for starting young.  Good job, Mamma! 

 

I agree with the great advice you have found here so far.  What Kinsa said about there being groups which will help your child secure employment.  That has been our experience also.

 

Our friends had to take a look around at housing options for their 22 year old son.  Cognitively he is 9, profoundly deaf and built like a tall mountain.  When he is scared he runs and barrels into people knocking them hard enough they hit the ground.  They realized that they needed to find him a group home and a deaf community to get plugged into.  Once they figured out which deaf community he preferred.  They started looking to see about the process of getting into a group home.  Because of the waiting list, and preference going to those who actually life in the community the group home is situated in, they came to some hard decisions. They will be selling their 4th generation farm to move into the community they want their son to stay in for the rest of his life.  It's 2.5 hours away from where they currently live.

 

Surround yourself with parents who are living the process now.  Glean from them, work all the agencies and remember the squeaky wheel gets the oil.  Go proudly and fight what your child needs.

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I'm not familiar with ID and have to wonder if it is more related to the lateness of having her hearing/speech issues addressed.  I say this because my ds wasn't dx with his severe hearing impairment until he was 15 and somewhere around the age of 12 or so he stopped mentally maturing.  He's now 21 and we're still working forward but he's no where near his 18 year old sister's maturity.  I don't believe you need to be worried about whether some employer will or won't accept your HS diploma because those who do (or really those who even ask for it) are few and far between.  This young girl may just surprise you (I don't know why I feel like this but I feel strongly! and I've never even met her) and her skills may just take off in ways that you had no idea she was capable.  There are some things I wouldn't worry about - driving and dating.  She's obviously not able to handle those types of mature issues at this time and that is okay to be firm in those beliefs but I will say that at my home, irregardless of age or issues, no one has dated because we wanted them to focus on who and what they wanted to be in adult life. I'll stop there and not derail to the whole topic of dating- each family has their own rules.

 

4 years is a lot of time for growth and development.  If she is learning and doing well with MUS Gamma, keep going at her pace.  Want to teach money skills or clock skills - make a unit study and get those skills covered.  Lessons on public transportation might be great to have but you may need to wait until she has a little more time to process all the changes in her life.

 

What concerns me is whether or not She is able to process what is going on - the DX.  Does she understand or can she understand what the doctors have said?  I know that my ds was crushed when he learned about his hearing loss because with that diagnosis came the destruction of dreams - a military/Law Enforcement career.  I had no idea at the time but we should have sought some therapy to work through those losses at the time.  Just really be aware of her emotional condition.  When a person loses a human sense (or finds out that it is not there) a period of mourning takes place and the Docs. don't tell you this is normal.  Everyone around the person goes through this but so does the person.  As adults we are mostly able to be better process the news but not so with the child.  They seem to get caught up in all the mumbo jumbo of big words/medical terms and then life goes on and they never had time to work through it.

 

Your child may or may not be able to hold a job.  Time will tell.  I happened to look the social security benefits because I've been looking into what makes a person eligible for disability and he's just on the cusp of being able to file.  Technically, he could challenge because there are many jobs he can't handle (phones, order taking, loud jobs - jobs we've found out he couldn't do in his teen years which eliminated much hope of a job as a teen at the time).  We're working on getting him through CC and it has been a challenge but he's doing it and doing it well.  He's used the resources the school has and we've provided the emotional support (and I've helped edit papers but he's now on his own).  He's not always gung ho on doing it but he's working on it.

 

Just a few rambling thoughts from a mom with a hearing impaired young man.

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1. You may need to speak with the school districts to find out what they do. Plenty of kids with disabilities don't qualify for diplomas. Local agencies and support groups for parents with disabled children can be a good source of information and support as well. Local high schools and community colleges often pair with local businesses to offer internships so that kids can get job experience. Your state may also have a dept. of vocational rehabilitation that offers training in resume writing and so on, though this may possibly be for kids who are past high school age.

 

Here is a link to a college that offers an associates degree for adults with developmental delays. This may give you some ideas for what to emphasize. http://www.bellevuecollege.edu/programs/degrees/nontransfer/

 

2. There are often social groups for teens with intellectual disabilities. My advice is to start networking like crazy. People are out there who will be able to tell you in depth exactly what they did. Tracking them down will be one of the best things you'll ever do. (Sorry that's not me! But, seriously, I've learned the most from other moms with kids who are a few years older than mine.)

 

3. Often, the shift in focus to life/job skills is started when the student enters high school. You're at the right age now, or will be very soon.

 

Btw, don't forget to sign your child up at the state office for services for developmental disabilities. The process is a pita, but the benefits could come in handy. Don't forget to start looking into guardianships & the legal aspects of long-term care.

 

Good luck! It takes time to find local resources, I know.

 

Eta: to delete my extra number 3.

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Heidi, well she was diagnosed late....age 8 and lost her hearing somewhere right around or before Kindergarten age we're pretty sure based on audiologists' reports and her speech and such. But she didn't have any dreams hearing problems messed up. In her birth family only one aunt and a few men work at all, her birth mom never worked and neither did her grandpa. So she has no basis for understanding that normal people grow up, graduate high school, get a job, get married, etc. She really doesn't understand much of her situation though we try to kindly explain things along the way and that there are some things that are harder for her than for others. We try to spin it in a "everyone has things that are hard for them" kind of way and that learning is especially hard for her. 

 

I spent all summer on a money unit study for her....none of it stuck. This is the kind of thing that alarms me, it's not just a neglect/lack of experience thing though that plays into it a bit too. And yes, we're not big on much dating (only casual and in groups, not exclusive dating alone before 18) anyway but ALL her friends have boyfriends/girlfriends so it's a topic that comes up. 

 

Ottakee, her IQ is 69 on the most recent neuropsych test, so really we're at the ideal point of qualifying for services but being pretty high functioning. Now according to that IQ she should have the maturity of like a 10 year old right now but she very much does not. She acts 5-6 and has for many years per her foster reports. 

 

Mrs. Tharp, apparently in PA they give normal diplomas to all kids who do their time. For kids like her they'd basically give it to her for 'meeting her IEP goals'. But homeschooling of course works differently. We're definitely looking for local resources, we're supposed to hear back from one this week about ASL classes and help figuring out how to get her signed up with disability and such. It's a small town so not much around but we're looking to move soon anyway back to a major city (Atlanta maybe) to find DH a job and to allow us to find more/better services for Ana. 

 

Still sifting through replies and jotting down advice, thanks for the responses so far!

 

 

 

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Mrs. Tharp, apparently in PA they give normal diplomas to all kids who do their time. For kids like her they'd basically give it to her for 'meeting her IEP goals'. But homeschooling of course works differently. We're definitely looking for local resources, we're supposed to hear back from one this week about ASL classes and help figuring out how to get her signed up with disability and such. It's a small town so not much around but we're looking to move soon anyway back to a major city (Atlanta maybe) to find DH a job and to allow us to find more/better services for Ana. 

 

Huh. You would think there would be some equivalent provision for hsers. You know, something like, "has met hsing goals such and such". Something like that. Also, It seems like it wouldn't be legal to make hsing requirements higher than ps requirements. Maybe, (if you're still in PA of course, but sounds like not) if you were able to explain your situation to the right person, they'd be able to make an exception for you.

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Yes, Pennsylvania is prejudiced against homeschoolers in general. Here's a pretty typical example of a diploma program (the most widely used here in central/western pa) http://www.echsdiploma.org/diploma.html So you can see the basic requirements. The Geometry and Algebra requirements are the most difficult ones for me to consider with Ana. Now I think I could drag her through a basic Algebra course before senior year but would it be the best use of our time? Not sure. See, the schools get around this requirement by mainstreaming all but the most severe cases of special needs. Ana was mainstreamed and making straight A's.....because the teachers would let her retake the tests as often as necessary *after* circling all the questions she got wrong and giving her multiple choice questions vs fill in the blank. She didn't retain anything but it was all okay because she was being given an 'equal' education. 

 

I could give her a parent-issued diploma but I'm unsure of those and whether anyone will recognize those as legit in real life even though technically they are now allowed. I'm currently leaning towards possibly using an umbrella online school to make sure she has a real diploma anyone would see and not doubt if they asked about it. 

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Just a quick thought but depending in her functioning level in in 5-6 years you might NOT want her to get a diploma. In Michigan they can get a certificate of completion.

 

If she gets a diploma she might not qualify for many rehabilitation and other services, esp past age 18-19.

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Yes, Pennsylvania is prejudiced against homeschoolers in general. Here's a pretty typical example of a diploma program (the most widely used here in central/western pa) http://www.echsdiploma.org/diploma.html So you can see the basic requirements. The Geometry and Algebra requirements are the most difficult ones for me to consider with Ana. 

...

I could give her a parent-issued diploma but I'm unsure of those and whether anyone will recognize those as legit in real life even though technically they are now allowed. I'm currently leaning towards possibly using an umbrella online school to make sure she has a real diploma anyone would see and not doubt if they asked about it. 

 

Have you talked to Erie and your evaluator about this?  I looked at the requirements, and so long as you focus on the General Diploma, most of the requirements seem, at least at first glance, potentially feasible.
 
Graduation Requirements for all Diploma Options
 
According to Pennsylvania’s homeschooling law (Act 1988-169), the following courses are required for graduation from a home education program:
Four years of English
Three years of Mathematics
Three years of Science
Three years of Social Studies
Two years of Arts and Humanities
Arts and Humanities may include courses such as:
Art, Bible, Dance, Foreign Language, Home-economics, Music, Philosophy, Practical living, and Shop.
 
A one year course will equal one full course credit.
 
So, to meet the above, she only has to do one year of the subject.  There are no requirements as to the academic level of the work.  This is only fifteen credits; over four years that's only four credits per year.  Then there are the content requirements:
 
The law further requires that the following areas must be covered in some way at the secondary level (7th-12th): geography, civics, world history, history of the United States and Pennsylvania, general mathematics, algebra, geometry, safety education (including fire safety), health and physiology, physical education, music, and art.
 
Since the law does not specify how much of each subject must be covered, there are two options.
(1) Students may study these subjects sometime during grades nine through twelve as a credit or partial credit toward graduation. The courses and credits would then be listed on the student's transcript.
(2) The required subjects may be taught in either seventh or eighth grade. High school credit would not be given, but neither would the courses have to be repeated in grades nine through twelve. The ECHSDA Diploma Transcript includes a paragraph to cover this second option. The evaluator's signature on the transcript verifies that the necessary coursework was completed at the secondary level.
 
Take a look at the various subjects, consider what your dd CAN do, and talk to your evaluator and Erie about what might be sufficient to cover the requirements. Think about what would be an appropriate curriculum for your particular student during the high school years.  What does she need or want to learn that could fit into these content areas?  Remember that not every high school student is doing highly academic, college-prep work.  A few ideas off the top of my head - these may or may not be a good fit, but might be a starting point... 

Geography - this could include things like the geography of your local area.  What are the nearby places she may want to go?  How could she get there using public transport?  Drawing and using basic maps to get around, nature walks in various environments (beach, wetlands, forest, city, suburb, farm).  The basics of world geography- perhaps seeing some ethnic dance, eating ethnic foods, finding their origin on a map, etc.  

 
Civics - meet your local mayor, go to a city council meeting, learn how to vote.
 
World history. US history, PA history - visit various local reenactment festivals, museums (ancient Rome/Egypt/etc., historical plays, making crafts or foods the way they did in the past, etc.

 

General math, algebra, geometry - This is the hardest area, I'm guessing, but note there is no requirement here that the student complete an entire year's course called "algebra" or "geometry".  Certainly there are parts of these subjects that begin at lower levels.  4+x=10 falls into the realm of algebra - could she manage a bit of this?.  Working with shapes qualifies as geometry; this could be done through hands-on activities such as artwork or sewing (circle skirt!). 

 
Safety is easy, health & physiology could cover all kinds of self-care skills, phys ed could cover lifetime sports such as dance, hiking, karate, bike riding, etc., and music/art is easy..
 
So I"m guessing it really is just the math part that would have to be carefully considered, and even then only the "algebra" part.  Again, talk to your evaluator.
If the Erie general diploma doesn't work out, there is the parent-issued, evaluator-signed option.  I'm not thrilled with the standard form that must be used, but it is indeed a standard form, recognized by the state.
 

Just a quick thought but depending in her functioning level in in 5-6 years you might NOT want her to get a diploma. In Michigan they can get a certificate of completion.

 

If she gets a diploma she might not qualify for many rehabilitation and other services, esp past age 18-19.

 

This, I think, is a serious consideration that might negate everything I've said above.  

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The other ladies are giving great advice re the diploma and such.  Another option is to contact HSLDA (I know, some don't like their policies, etc., but they have done some great work on getting many issues in the homeschooling world worked out).  I wouldn't hesitate to issue a diploma - it is nothing more than something printed on a fancy piece of paper with a seal.  And it has a watermark - homeschooldiploma will print one for you and it looks fancy.  What matters is a transcript but again, you can either pay to have officially done or you can print on a piece of paper and sign and date.  You can choose when to graduate your child - maybe it is later than the typical 18 year old.  I just wouldn't be swayed in having her meet some outside diploma's requirements with a child that has some serious issues.  I'd be worried more about them accomodating and understanding her needs versus some employer wanting to see a diploma.

 

So the late maturity - at least working at the level she should be based on her IQ - this can be the delay I'm talking about.  Kids that go undiagnosed for years - especially in their formative years - just shut down.  The brain shuts down and fails to progress.  This was something I learned along the way and then when I brought it up with my ds' specialists - they all were like "uh, yeah."  Well, why didn't someone tell me this at the time!

 

As for her dreams in the future - since she is around other kids and she sees what is important to them (i.e., phone, boy/girl relationships) there may come a time in which she will question her future.  Just be sure to keep the dialogue open and watch for signs that perhaps she's not processing your answers to her questions.  Kids like this internalize.  They don't know how to make the social adjustments.  They don't figure out who they can talk to for help.  I'm just sharing the "mistakes" I made along the way trying to help my ds make progress.  We just tend to forget the whole brain connection - which is already working so hard trying to compensate for the hearing loss.

 

 

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Just a quick thought but depending in her functioning level in in 5-6 years you might NOT want her to get a diploma. In Michigan they can get a certificate of completion.

 

If she gets a diploma she might not qualify for many rehabilitation and other services, esp past age 18-19.

 

Hm, interesting. But if all special needs students, even ones who are nonverbal and basically barely functioning, get a regular diploma in PA I don't think that would be an issue here at least? We are looking at moving this summer, partly to be closer to better services for Ana, and so I'll keep that in mind and gauge our plan off of what that state generally does. It might be a question I can ask when we apply for disability for her too, better to know ahead of time for sure!

 

1shortmomto4, yes I think you've got a great point about her brain possibly shutting down due to late diagnosis and neglect. And yes she does ask questions about boys and such but she doesn't truly process a lot of my answers unfortunately. Other times I think she does but it's hard to tell because she refuses to talk about her own thoughts or emotions ever. Conversation with her involves only shallow and immediate things or random memories of shallow things from her past. We dropped counseling after 9 months because she refused to talk to her counselor too. Nice counselor but never built a rapport so we're looking for someone who is more experienced in adoption and disabilities in general. I've been trying to give her the words to express her emotions and talk with her about how to seek help or advice when she needs it. I really hope eventually things even out with her so that she starts realizing A) she can hear now and B) she's safe now and starts learning. It's like that whole Maslow's hierarchy of needs thing, she's still so focused on where food comes from that she has a hard time placing due importance on school stuff. And she's so used to just nodding her head and pretending she hears that we have to break those bad habits. But those were encouraged at school, otherwise she would have stood out as odd. So we have a whole bunch of good but tough adjustments she's processing.....being able to hear, being safe, and actually being expected and helped to learn in homeschool. 

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If the law just says that algebra has to be covered "in some way", then what about something hands-on like "Hands on Equations" and "Balance Math Teaches Algebra"?

 

http://www.borenson.com/tabid/916/Default.aspx

http://www.criticalthinking.com/balance-math-teaches-algebra.html

 

For geometry, look into Right Start G and "Understanding Geometry"

 

http://rightstartmath.com/home-school/rightstart-mathematics-level-g-starter-kit

http://www.criticalthinking.com/understanding-geometry.html

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Do you know of the group Parents Helping Parents?  They have online support groups for every syndrome, and I think you would find a ton of information there.

 

Also Bethesda Lutheran Communities is a longstanding and well-respected provider of services that you might want to contact for information.  http://bethesdalutherancommunities.org/

 

Lastly, when you're setting up your estate plan, ask your lawyer about a special needs trust for your daughter.  

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I just looked up something for PA law and it says that special needs kids can get services until age 21 or they graduation.  You are right they do not issue a certificate of completion like they do here in Michigan.

 

I think the best thing then would be to hold off on granting the diploma until age 21 if you are still in PA at the time.  In Michigan the kids can get services until age 26.

i would encourage you to check out special Olymics, your local disability groups, etc. for great peer support for her.  Often there are lots of opportunities for these kids that come through the school districts.  My girls are doing 2 hours of job training a day right now.  They can also attend a vocational ed program or a young adult transition program after highschool since they don't have a diploma.

 

I would not want to limit your daughter at all but also be realistic as to what are reasonable goals for the future.

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