Parents of disabled kids thread...

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<p>In our state (PA) , a re-eval is done every three years for iep purposes.</p>

<p>It does not have to include a psychiatrist’s report.</p>

<p>Our non-verbal S gets his adult benefits because of his MR diagnosis, even though he is also taking medication prescribed by a psychiatrist. His measured IQ has hovered around 20 for the past decade or so, although he scores higher on some adaptive scales, sometimes on par with those considered to have moderate impairments. </p>

<p>Autism or PDD does not currently bring benefits such as SSI without either MR, or mental illness diagnosed by a psychiatrist at a level that would preclude unemployment or underemployment. </p>

<p>I would make every effort to take full advantage of special education entitlements, since these are almost always more comprehensive than adult entitlements for higher-functioning individuals, at least in the short run after aging out of school.</p>

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<p>Oops, I meant a level that would preclude <em>employment</em> or employment at a level beneath an individual’s abilities or educational level. </p>

<p>One issue that often comes up with people on the spectrum without intellectual disability is that because of social deficits, poor motor coordination, or sensory issues, they cannot easily perform in many standard entry-level jobs with low educational barriers to entry, for which a typical college grad would be underemployed.</p>

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<p>My DS has times when he is fully functional and times when he is literally not able to do anything. He was first diagnosed with major depressive disorder (MDD) at age 7 and more recently with generalized anxiety disorder in addition. He is very bright although cannot always access it due to his conditions. He went to a very rigorous LAC and had a successful freshman year and then crashed mid-year both sophomore year and again last year. His LAC was a couple of thousand miles away. In both years we brought him home on med leave; he had therapy and med adjustments and after a few months emerged again. He is very shy and introverted and could likely have a dx of social anxiety as well. </p>

<p>Together we decided that the LAC was just too stressful an environment so he, at 22, is starting his junior year at a state school about an hour from home. He has chosen to live off-campus in his own apartment. We have many concerns about his ability to live independently, his predilection to isolate himself especially when anxious, and his ability to handle a large school environment. At least we are closer now. He is compliant with his meds and very avoidant of drugs and alcohol, for which we are grateful.</p>

<p>I so appreciate all the parents here who have shared their stories and acknowledge that most of you have kids with far more serious issues. I think we all share the fear in our hearts for our children.</p>

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<p>Siemom, best to your family, it’s sound like your son is on a good path (with your help).</p>

<p>I think that families of children with special needs have extraordinarily complicated lives, no matter the degree of challenges their children experience. There is no easier path really. I need to plan for housing for my moderately disabled daughter but I don’t have the stress of another family whose child can attend college away from home but will have many issues while doing so. There are just so many variations and fortunately, most families rise to the challenge.<br>
I know some families do break under the unrelenting pressure of raising children with special needs ( and even ‘typical’ children for that matter!) But I am so inspired to hear how others are coping, both here on CC and in our real life.</p>

<p>Two little bright spots in our lives, with our DD: we found a wonderful social worker to work with her on some young adult issues she’s facing, after much searching.
We’ve also met a family putting together shared housing for their child and plan to investigate whether it could work for us. The family networking thing is powerful, we’re fortunate to have an active group in our area.</p>

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<p>School starts for my son '16 on Monday. There was an open house/meet the teacher night tonight. So, we went and met his teachers. He has a new special ed teacher this year, his old one retired. It turns out the new one is a sister of a former client of mine. I think she will be good for and with him. She will help us decide the best post high school route and even gave us her cell phone number. She seems like more of a go getter than last year’s teacher.</p>

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<p>Bajamm, that sounds encouraging. Pretty good sign that she will be accessible to your family if she gave you her cell phone number.</p>

<p>A little black cloud came over our plan for the new social worker for our daughter. Not surprisingly, it involves insurance coverage and in vs out of network stuff. Still may work out or we may decide to pay out of pocket.
Really a struggle sometimes to get what they need, isn’t it?</p>

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<p>The things that have worked well this summer for my 22-year-old son with schizoaffective disorder:</p>

<ol>
<li><p>We found a good case manager, through an organization recommended by our state chapter of NAMI. The young woman is pretty and on-the-ball, a great combination! It is so wonderful to have someone other than ME looking out for my son’s needs.</p></li>
<li><p>When my son told the C.M. that he would like to try some volunteer work, she recommended a particular food pantry, because it was well-run and less chaotic than others in the area. My son LOVES it! He is meeting other people in a non-threatening arena, learning to follow directions, and enjoying helping others less fortunate than he is.</p></li>
<li><p>He started equine therapy a couple of months ago, after one of my friends recommended it. Wow, I think this would be helpful for a lot of people. The therapist is teaching him how to work with horses. She shows him how each horse has a different personality, how to interpret their signals, and how to set boundaries for them. Then she extrapolates the lessons to people! The combination of the physical labor plus therapy is a home run. And my son is not even someone naturally drawn to animals.</p></li>
</ol>

<p>The rest of our family has noticed that my son looks better - more normal. He attributes it to the lower level of stress during the summer. I reminded him that some stress is normal, but he has a huge safety net. It’s OK to be a little apprehensive about a college exam. He just needs to remember he has options if things get too tough. Our local university has an excellent office for students with disabilities, thank goodness!</p>

<p>So one day at a time. We are cautiously optimistic.</p>

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<p>MaineLonghorn, what you wrote sounds great. </p>

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<p>ML, enjoyed hearing your son’s plans, and love your “cautious optimism”.
That is a term we use ALOT at our house.</p>

<p>I think an effective case manager is key. Our DD has had many in her 25 years, mostly fine but a few that were not helpful at all. Her present CM is also parenting her own special needs young adult, so she gets it.
She emails or calls me every week or so with classes my DD might like or meetings I might find useful.
Very practical. We are very grateful for her.</p>

<p>Yes, amazing to have another person besides the parent(s) looking out, I agree!</p>

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<p>ML- glad to hear of how much is in place and making a difference with your son. Good info about the case manager option. </p>

<p>MM- Glad to hear that your DD now has a good case manager and that it is helpful. </p>

<p>Lots of good resources and tips in this thread. </p>

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<p>I don’t have a disabled child, but I’m active on the Aging Parents thread, and it occurred to me we might have some similar issues. Bless you all. I see much love and wisdom here.</p>

<p>Forgive me if this has been mentioned; it’s late and I haven’t read the whole thread yet. I’m popping in with a birth control suggestion. My D recently got an implant. Her doctor told her that, for women who haven’t had children, it works better than an IUD. I can’t remember why. It’s in her upper arm and will last for 3 years. Installation is of course less invasive than an IUD, which may be a consideration for your daughters. </p>

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<p>Mental illness is so horrible. My younger son, 19, has a good friend who is 17. The boy tried to kill himself Wednesday. He suffers from severe depression. He is in the same hospital that my older son stayed in last year. His mom and stepdad are beside themselves. I told them I would be happy to help them navigate the system, since their insurance deductible is so large - they will need help. They are hesitant to label their son “disabled,” but I told them it doesn’t have to be a permanent designation. The stepdad naively told me, “Well, they’re not DOING much at the hospital for him, so I don’t see how it could be too expensive…” I told him it’s about $1,000 per day! And I agree, the place felt kind of like a warehouse. A bright, cheery place, but still a warehouse. :(</p>

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<p>LasMa- thanks for dropping in! I agree that people with aging parents and parents with disabled kids do share some issues. I unfortunately lost both my parents many years ago but I used to stalk that thread before Dstark kindly started this one.</p>

<p>Thank you for the suggestion of an implant for BC. We are struggling with the issue now for our DD.
She is not active now but we know it is wise to have something in place for the (not too distant?) Future.
BC pills seem to be problematic for someone who may not be focused enough to use properly.</p>

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<p>Hello friends, I thought of this thread when reading this op-ed piece from today’s Chicago Tribune. You may find it interesting: <a href=“Notes from a not-so-empty nester”>Chicago News - Chicago Tribune - Chicago Tribune; </p>

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<p>Mary13, thanks for tihe link.</p>

<p>The article rings true but there is a negative vibe that permeates throughout the article. We have talked about some of these negatives. There are positives too. Today…I am going to dwell on the positives. :)</p>

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<p>Must I subscribe to read the article?</p>

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<p>Just today, I told my son that I’m glad he’s home! We have been watching the US Open today. It’s great to see him ENTHUSIASTIC about something. Schizoaffective disorder has deadened his emotions, but he seems to be regaining them.</p>

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<p>@musicmom I didn’t have to subscribe to read the article</p>

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<p>Ok, the link kept telling me I had to subscribe but when I googled the title, I was able to read it.
And cry. Felt better after crying.</p>

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<p>@Mary13 - Thanks for drawing our attention to this article. In the autism community, we are unfortunately used to high rates of depression among parents and suicide/homicide stories.</p>

<p>This article was particularly heartbreaking since the types of lives these parents developed for their children seem to be the ideal situations many hope for. What makes the lives described even more remarkable to me was the realization that when these adults were newly diagnosed as children, it was the norm for many families to institutionalize their disabled children and maintain minimal contact. The parents had likely also encountered well-trained and well-respected professionals who had been trained in the “refrigerator mother” genesis of autism. (We encountered some of this even when our S was diagnosed, less than twenty five years ago.)</p>

<p>I have to wonder what might have given this situation a happier ending. Many times when this type of thing happens, we hear that the family was on an interminable waiting list for residential services or respite, but this does not seem to have been the case in this situation. I would guess that there is a long and complex back story to this ending.</p>

<p>We are in our sixties and worry about how our autistic S will process our eventual declines and deaths, and have begun to discuss this with his agency. We still wonder how he processed matters when his beloved, deceased grandparents, constant fixtures during his early childhood, first became ill and frail and no longer visited, and later passed away. He did not see them when they became very ill and did not attend their funerals, and has had no contact with relatives other than parents or siblings in over a decade. He still functions at a toddler level in so many important ways and seems “ageless” to us, even as he has matured into an adult male body.</p>

<p>Frazzled H wonders often if S will think he is being abandoned if /when one day we can no longer come to see him or take him home, or even if he will understand what is happening if we downsize and sell his childhood home. Will he seat himself by the window to wait for us, even after we can no longer come to him? (At his group home, he goes to wait by the window when staff tell him that we are on the way to pick him up.) Or, will his staff continue to meet his needs with diligence if there are no relatives who show up on a regular basis? </p>

<p>Hopefully, by then he will have a full life and if he does look for us for too long, he can be distracted. Or perhaps a sibling will visit him on a regular basis, if they are living nearby.</p>

<p>We have bought him a burial plot next to ours, and we have been advised that if we pre-decease him, his aides will see that he can attend a private viewing if the funerals are too much for him. </p>