<p>Oldmom, thanks for posting the wedding story.</p>
<p>Our 25 yr old daughter with ID is in her first dating relationship. It is an adventure, for her and also for us.
We have met the young man and his family, they are lovely. He is a bit more capable than our D.
Just so difficult to know how much to be involved and when to back off.
We want our DD to enjoy as much of life as possible but we want to protect her from pain.
Sounds like a parent of any young adult child, huh?</p>
<p>I saw something about formal guardianship. I didn’t think this was possible, but my brother got this taken care of when his son was still a minor, 14 years old I think. It helped them a lot.</p>
<p>He is 19 now and still goes to school. His mother will quit work once he is back at home and can’t go to school for free anymore (21 I think).</p>
<p>The job market is terrible for the disabled. It makes the general rule of it being easier to get a job when you have a network to only being able to get a job if you have a network.</p>
<p>NJ is having a tough time with housing too, they are trying to move people out of “centers” and into community housing, but many people have lived in facilities for years, and they are being forced to move.</p>
<p>My FIL could have gotten full disability due to polio, but he worked for over 30 years even so. For all the people who fake, there are a lot of people who are disabled and work full- or part-time because they don’t want to sponge off society.</p>
<p>My friend has a brother who was never diagnosed, but like @dstark just said, for a few minutes he seems fine but he still has tantrums at 45 years old. His mom asked him to put a tape in the VCR (they still had a VCR LOL), and he tried twice, and it kept popping out. He started crying and yelling and stamping his feet. He functions okay sometimes, but he does not understand bank accounts, checks, and credit cards. He thought that you just write checks and use credit cards, and you never have to pay for them. He is not on SSI, he works two jobs one bagging groceries and one in the library arranging books. Yet he has a driver’s license and drives by himself. The fear is of course that someone will understand that he has an issue and take advantage of him, especially because he now lives in an apartment by himself.</p>
<p>Note about SSI and SSD - in our state, we have DDD funding: <a href=“http://www.state.nj.us/humanservices/ddd/services/fss/”>http://www.state.nj.us/humanservices/ddd/services/fss/</a></p>
<p>My brother put in a swimming pool, among other things, with DDD money.</p>
<p>Rhandco, tough post. </p>
<p>With the housing situation being bad… And because we can not predict the future…</p>
<p>We are probably going to change our trust. Just leave everything to my disabled daughter. My oldest daughter will be in charge of the trust and will have to make decisions regarding her sister.</p>
<p>We can not control the situation from the grave.</p>
<p>My son has his annual IEP tomorrow morning. I am always nervous about these, as he is always sort of on a bubble. Sometimes the school is short on resources and don’t want to spend money on kids that are on a bubble when they have students with more severe disabilities. I get confused. My son is definitely higher functioning than some kids, more able to take care of himself in many ways. That doesn’t mean he doesn’t need supports to help his weak spots.</p>
<p>Everyone has weak spots, it is just that most of us know what they are and are capable of searching out the help we need to deal with them. (ie someone that can’t cook well may find friends that do. The non cook provides the food and the cook prepares it, etc.) My son either can not self identify his weak spots or is incapable of cultivating the outside supports on his own. One of my nightmares is that the school will tell us he no longer needs an IEP, right when he is deciding on his post high school plans.</p>
<p>In other news, he is on a college fair field trip that his resource teacher encouraged me to let him go to. I hope he is getting lots of information. No, really I hope that he remembered to leave class and get on the bus to go.</p>
<p>Bajamm, good luck tomorrow.</p>
<p>One of our family’s biggest everday problems is lack of transportation for our non-driving disabled adult daughter.
She does have wonderful FREE county paratransit bus sercice daily to and from her wokshop. We are grateful.
Other than that, though, she depends on us. Doctors visits, counseling, all social events.
Difficult when she has many plans and we both work.</p>
<p>I spent my day off today on the phone, on hold, researching online, sending emails attempting to get her set up for rides on our accessible public transit service.
It incredibly complicated, somewhat inflexible and maybe not worth the effort.
The phone reps were polite but pretty much followed the script. I guess they have to.</p>
<p>So, DD has a trip set for next week, we’ll see if it proves useful.
This particular trip cant even deliver her home, only close to home and we hav to connect with her at a predetermined drop off site.</p>
<p>I wish things would get easier but its not happening.
They’re not really getting harder but im just getting older and more tired for sure.</p>
<p>Wow. There is a Whistlestop service for the disabled where I live. We have never used the service but we know many disabled who have. I guess I will ask more questions about the service. </p>
<p>We had a meeting with the Regional Center that provides government services. Nothing awesome happened. We were given clarity about the housing situation. It is section 8 housing or we provide the housing. </p>
<p>Dstark, yes, pretty sad about housing.
We supposedly have section 8, or long waitlists for public low income subsidized housing or we purchase housing and support staff. We lack funds to provide housing and staff privately.
Or she continues to live with us till we are no more.</p>
<p>Transportation (or lack thereof) is annoying.
Lack of safe housing is terrifying.</p>
<p>We have a HandiVan service in our state, but it is pretty unreliable from the people I have spoken with. It can take 1-3 hours to get to your destination on our small island and they are unreliable as to when they pick you up.</p>
<p>Not much in housing that I’ve heard of.</p>
<p>Yep…no great housing choices.</p>
<p>My friend lives in a large city in TX and her son is developmentally delayed (@7 years old mentally, probably related to the chemo he received as an infant) and has severe autism. There does not seem to be much of an infrastructure set up for disabled young adults either as far as housing or transportation. His school does seem to have a good program where they have training in job appropriate behavior and also do job placement. He has some behavioral issues that the school is trying to resolve before they all place him. As he turned 18, Mom is trying to find out what there may be out there for him. It surprised me how little help and information there is for their situation. She knows he will likely never be able to live on his own but would like him to have something other than her as she is likely to predecessor him.</p>
<p>My small town has an excellent non profit organization. They have regular houses in regular neighborhoods where disabled adults live. There is an able adult there 24/7 to help with what is needed including handling money and they have drivers who will drive people to work etc. (My son worked for them for a while). </p>
<p>Swimcatsmom, Good luck to your friend and her son.</p>
<p>I wrote earlier about a young woman with digestive problems. </p>
<p>She just got a job at the Gap. </p>
<p>I am super excited for her. :)</p>
<p>This will be a long post, sorry for the length. I do need to write it out and know that maybe someone somewhere is listening.</p>
<p>I have gotten myself confused this week in regards to my son and I am not really sure where to go from here.</p>
<p>S’16 only treated dx has been ADHD. When he was young he had a dx of PDD-NOS, though no one has been doing much with that. S has been seeing a psychiatrist to get his ADHS meds, though his pediatrician probably would be willing to do that prescribing.</p>
<p>S really struggled in school until this fall. He had mostly C’s, with a few D’s thrown in. He would get an occasional B and always gets A’s in PE. PE counts in the GPA, so he ended 10th grade with a 2.08 GPA. I thought last May and all summer that I would be encouraging him to try a technical type program at the CC, something with computer or photography.</p>
<p>Now, this semester he is getting all A’s and B’s. It is not a frivolous schedule. There are no honors or AP classes, but there is Psychology, American History, English, Environmental Science, and Year Book. The only fluffy type class is consumer math instead of Algebra 2. So, I am thinking that maybe he can try college, maybe on a barely full time schedule for the first year, he can take a summer school class or two to keep pace.</p>
<p>Then, his psychiatrist suggested that we apply for disability for S and get some testing done as evidence for the disability. I went along, just to see what would happen. We have not applied for disability yet. I just got the testing results back yesterday.</p>
<p>The psychologist suggests that we get mental health waivers to pay for services and to get S into a vocational program to help with job training for after high school. He also stated that S’s IQ is 75.</p>
<p>The testing results seem at odds with S’s grades right now. Can a 75 iq person be successful in a BA program? It appears that S has matured some over the summer and can do work in HS academic classes. </p>
<p>I don’t want to set him up for failure, but I don’t want to tell him he can’t do something he is capable of doing.</p>
<p>We had started looking at 4 year schools that are less than 3 hours from home, so he’d be staying in the dorms, yet close enough we could get there if necessary.</p>
<p>He already gets himself up with an alarm clock at 6:45 am (basically I told him if he couldn’t or wouldn’t use the alarm clock on his phone, then the phone was going away, so he started using it). And, he does do his own laundry. I am not worried about day to day living skills so much as being academically successful or at least academically adequate.</p>
<p>The IQ testing typically has subtest scores. Often people on the autism spectrum (and PDD-NOS tends to be a spectrumy diagnosis) have wide variation in their subtest scores. It could be that your son is completely unable to do certain mental tasks, yet excellent at other tasks. Take a look at the subscores, if you can.</p>
<p>That being said, your son’s high school schedule, to me, does not sound like a college prep schedule. He’s not taking biology, chemistry or physics, and he’s not taking a real math course either. It may be that this semester he has been placed in lower-level classes, appropriate to what his high school believes are his capabilities, and he is getting grades that take into account what his teachers think his level is. And his psychiatrist and psychologist don’t sound like they believe he could be successful in college. Has he taken college entrance examinations? Does he have a guidance counselor at school? Has he written research papers? </p>
<p>Failure is ok. </p>
<p>In addition to what CF wrote…</p>
<p>What do his teachers’s say? Do they say he can do college work? </p>
<p>How does your son interact with kids with iqs over 100? </p>
<p>What does your son want?</p>
<p>Thanks, Cardinal Fang. I will take a look at the subscores. </p>
<p>You are right, his schedule is not really rigorous, we know he won’t be going to a top 100 school by any means.</p>
<p>He has taken biology, it is a prerequisite for Environmental Science. He has not taken Chem or physics and probably won’t. I do know of many non science majors that graduated from small LAC’s without having chemistry or physics in high school. S will probably take Alg. 2 next year and could theoretically take chem at the same time, though I doubt he does.</p>
<p>The psych doctor knows we are thinking about college and hasn’t told me not to encourage it. I think he thinks it is possible with a lighter load. He is more worried about S maybe not being able to work full time and having the disability money to use in conjunction with working part time.</p>
<p>How confident are you that he would be able to manage dorm living and, let’s say, a half academic schedule?</p>
<p>I am confident that he can handle living independently, he uses his alarm, does his own laundry, and can cook simple meals. He is a quiet kid and not into partying.</p>
<p>The academic part is what worries me. Last June I would have said that I was not confident at all. Now, the grades have shot up and he is taking a lot more responsibility in talking with teachers and working things out on his own. I am starting to have some hope that it may work, I just don’t know at what speed.</p>
<p>He has not taken any entrance exams yet, the goal is to take the ACT next April.</p>
<p>The associate principal in charge of special ed students has recommended that S take part in a special career academy program through the local CC next year as a senior. He would go to the CC every day for two hours and take criminal justice classes. He would earn 20+ criminal justice semester hours by the end of the school year. Nothing that would really fit into distributive requirements except for electives, but it would show us how he could handle college coursework. And, if he decided to major in criminal justice it would probably take care of all of the 100 and 200 level courses for the major.</p>
<p>Yes, I think the IQ test can be misleading. My son’s was recorded as a 100. This is a kid who is taking upper-level college classes in applied math and making mostly A’s! The psychologist said the reason is that he scored very high on some subtests, but VERY low (5%!) in his processing speed. So he gets extra time on exams and does well. I still wonder how he would do working at a professional job. He is going to start vocational rehabilitation counseling soon, so we’ll see what they think.</p>