Tuesday, September 9, 2014

Yes People with Disabilities Can be Unsavory Characters

My daughter has a new boyfriend.  I learn about him on a Wednesday.  He showed up at her door, which was fine.  I won't use his name for reasons which will become apparent shortly.  The DSPs (Direct Support Personnel) are supposed to call me, which they did.  They reported from the beginning that he had a disability.


I like to know when something different goes on because most of Dominoe's schedule and life is pretty structured.  If you have a child with autism you know how important that structure is even if they are an adult.


I'm not sure if they saw each other the Thursday.  I just don't remember.  I know the Friday they did.  There is going to be an election in a few months.  One of the people running for something or the other threw a dance in the recreation room at the apartments where DD lives.


The next day, Saturday, we met at a restaurant for DD's birthday.  She was 26 the next day.  The new boyfriend wanted to attend so I said yes.  He gave DD an iphone and activated it for her birthday.  I'm aware he has a disability and asked lots of questions.


He was aware that the phone was expensive.  He was sure he had the money.  Even though he has a disability he does not have a service coordinator or a provider agency.  He worked at the same place as DD but I'm not sure if it was competitive employment or not.


At some point the next evening he ended up with all of DD's gift cards.  When I fussed and asked her about it, she told me they were hers.  And...she's right so I didn't say a whole lot more.


The next evening she gave him her birthday money.  Now I really fussed.  She told me it was 'theirs'.  Then I really fussed.  There is no theirs with a guy you have been seeing five days.  We continue to discuss this issue and when money 'might' be shared between a couple.


I continued fussing and one of the DSPs who has been with DD a long time.  She had a long discussion with this young man about DD not understanding.  The next day he brought back the cash but to this date we have never seen the gift cards.


I know this young man knows more than DD does because he drives and he can carry on a general conversation by text.  Yes, DD texts but it's 'lovey lovey lovey' or 'mothery mothery mothery' or something  similar.


At some point he stopped talking to DD.  He also asked one of her DSPs to be his girlfriend.  He told the DSP her would buy her a cell phone!!!  He has been seeing DD less than two weeks.


I'm in the process of trying to get DD to understand that he isn't a good guy.


I'm also amused when I think of the people who say people with disabilities are little angels - NOT. lolol  Do you have a similar story?



Friday, September 5, 2014

Not a Good Year For Autism in Our Lives

I have to admit sometimes I'm full of my self. Things have been going so well for quite a while with my oldest daughter's services. Even the behaviors associated with her autism have been going fairly well. Then we had several problems right in a row and things have gone south. FAST. Somehow Dominoe burned herself with a hot bowl of soup. I haven't ever gotten a straight story from Dominoe if she carried the soup to her chair or if the DSP handed it to her that hot. As you may know with people with autism, getting a full accurate story is challenging. She's better now. But we spent a couple months going to the wound care doctor and having the wound debried. I now know more about would care, bandages, tapes, and burns than I ever wanted to know. I have had intense discussions around health and safety. I have had even more intense discussions about following the doctor's orders with nurses and the provider company. Then the supervisor of the DSP's was let go from the company. Dominoe was very attached to her. The new supervisor is totally different and definitely not hands on. Things gradually got to the point that we started looking for another provider company. There started being issues in the process of linking with the new company. I thought they were misunderstandings. Unfortunately when I spoke to someone in the local state office within 2 hours the new provider decided the couldn't meet Dominoe's needs. I guess it's better I found out now. I know people in the state office across the state. I don't want a provider company who thinks they might be able to stop me from speaking to anyone about how things work. On the other hand I feel like I have done something wrong... Things were going so well for Dominoe. But then maybe I'm too full of myself. It's really about Dominoe being healthy, safe, and happy.

Monday, March 10, 2014

Systems That Don't Work Together For People with Autism

If you are a parent of an adult child with autism you realize a lot of the systems you work with don't mesh correctly. I think the correct terminology is 'link' or 'linkage', or at least that is the terminology I hear people use. In the last posts I have been talking about the things we have done to be able to get Dominoe another job. She has a job making $8.00 an hour doing janitorial work. This is basically cleaning the lunch room and bathrooms. That is the same work she did at Burger Kind and Taco Bell years ago. She has done very well but is ready to exit from the services at Louisiana Rehabilitation Services (LRS). Her waiver is supposed to be available for the extended follow along services. At LRS follow along is basically a supervisory type service that checks to see if things are going ok. It is also used to provide more training or do problem solving if there are issues. With the waiver the extended follow along seems to be more of a function of the job coach or at least that is what it appears to be. With the waiver there are 24 days of extended follow along a year. The code is the same code as would be used for the job coach. Although things are going well I would like to access the extended follow along through the waiver. I, maybe right or wrong, believe that the company would be more likely to keep Dominoe if there were re-occurring resources. You cannot get the job coach and the direct support person/DSP/aide. We have built Dominoe's services around her behavior. The easy solution is to have both people work for the agency that supplies the DSP and the agency that supplies the job services. Except that there are four to five staff that would have to be trained for 24 days a year. My question was then is the job coach/follow along going to tend to behavioral needs or physical needs? Of course the answer is no. At this point I'm stumped and in the process of going up the chain of command through the Department of Health and Hospitals to find out if this is true. I realize this is requires a very fine understanding of how both systems work. I also believe these differences is why most families with a child with a significant disability like autism just give up on employment. Does any one else have experience with this?

Monday, December 23, 2013

Situational Assessment

We were still working on employment. I asked Louisiana Rehabilitation Services (LRS) for a situational assessment. If you remember LRS is our state's agency that does rehabilitation services. After a discussion about the situational assessment we were given the list of the providers in the area who could do it. There were three of them. One of the providers was one we tried to work with in the past. They spoke to Dominoe, looked at her file, and told us all they could offer was the day habilitation. Day habilitation in our area means sheltered workshop. I know people tell me it doesn't. I was working in this field when the sheltered workshops became day habilitation. The providers changed the name. The paperwork changed. The program didn't. I'm reminded of the story...if it walks like a duck and quacks like a duck it might be a duck. It was still a sheltered workshop. Anyway one of the other providers that could do the situation assessment was a one person company. She rarely worked with new people. So by process of elimination we choose the other company. I was present for the situational assessment. With a child with Autism someone needs to be there, at least in the beginning, to be able to provide accurate information and to explain some of the idiosyncrasies of the person. The situational assessment with the provider took one hour. We met in my daughter’s apartment for an hour. No one was present but the DSP, me, Dominoe, and the employment provider. Dominoe did have some job experience to talk about. She had worked for Burger King and Taco Bell. I’m sure we were able to provide some specific information about work about what she could do and could not do. Maybe other families didn’t have that kind of information. But an hour? After the meeting I called friends and professionals again to ask questions. They again were surprised and a little shocked at what I described. I was told that a situational assessment usually was done in a work setting, more than one work setting. The employment provider did tell LRS they thought they could help her get a job. Again I was waiting to see how this was going to work out.

Monday, November 18, 2013

Employment a Difficult Activity For People with Autism

My oldest daughter, Dominoe, and I have been working on getting her a job. She has had a job before. Twice as a matter of fact. She lost it when the economy tanked. We tried to get another job. I called our local Louisiana Rehabilitative Services (LRS) and was counseled that they could not help her because she was ‘too disabled’. Of course they didn’t use those words but that is exactly what they meant. Since she has waiver services we went to the largest agency in the area for help. I was upset that they sent us a letter saying all they had to offer her was a ‘sheltered workshop’. We made it clear from the beginning that she was looking for competitive employment. I was so disappointed that a sheltered workshop was all they thought she could do. So we did nothing. In the next couple years I got involved with an initiative in our state called Employment First. I got to meet several people who offered me advice. Again we went to Louisiana Rehabilitative Services but this time I knew a little more. When they counselor there told me that Dominoe needed more supports than they could provide, I emailed one of the people I had met. She told me to say that I knew they had to do an evaluation anyway. I immediately did that. I also told the LRS counselor I was working with someone who knew the system and was willing to give me advice. At that point he immediately scheduled her for an evaluation with a psychiatrist. I was greatly surprised at the thoroughness of the evaluation. Unfortunately the evaluation said exactly what that agency had said years ago. It said she would be appropriate for the sheltered workshop. Although the Employment First meetings never have really produced much, I again I consulted the lady I had made friends with through the meetings. She told me to ask for a ‘situational assessment’. Although that process was not all that I believe that was the point where everyone decided that we would really be working through the process. So she was on her way to a job. Or so we thought.

Monday, November 11, 2013

Adult Children with ASD

Being the parent of an adult daughter with autism and an adult daughter with aspergers is very interesting. Dominoe turned 25 years old a few months ago. Rose will be 21 years old next month. At this point they are old enough for me to be able to look back and evaluate some of things I tried with them. It also brings a whole host of other issues that are not particularly within my control. This is particularly true with an adult child with Aspergers. Because she is so verbal people forget the difficulties she has until they are presented in an odd situation. The issues with an adult child that has a deeper disability are no less frustrating. From dealing with staff designed to keep her independent to the struggle trying to get her meaningful activities like employment, services are so complicated. At one point in time I blogged about my daughters in the hope other people could find some nugget of information to help them raise a child with ASD. I have gotten away from that. Several adults with disabilities have posted in other arenas about their anger at their parents. I have spent a lot of time thinking and reading about that. Ultimately this is my story too. The issues around small children and adult children with ASD touch my heart and my need to write. If I give away too much information or as one of my children call it ‘TMI’ please remember it is done with the hope I can give other parents hope and joy when raising their child.

Saturday, September 28, 2013

What Parents Need to Know About Raising a Self Advocate

One of the side benefits of inclusion is our children learning to be self-advocates. A self advocate is someone who knows how and when to make their wants, needs, and opinions know. Parents do not always realize how important this will be in the long term. Letting our children see us advocating for them as early as possible it important. Parents are the first models and teachers for their children. One of my children with ASD always went to her IEP meetings. If we want our children to be able to advocate they need to see us do it. Another one of my daughters with autism didn't want to go to any meeting. She definitely could advocate not to go! Many times children with disabilities are taught to be compliant. There is a time and place for compliance. There is also a time and place to advocate for yourself. Learning how and when to do this is just as important a skill. Whether it is advocating for services or modifications in school or advocating for medical services it is important for our children to see us do it. Some children will get upset so we need to have plans for an aide or family member to be ready to take our child out of the situation. At different points in life our children will start mimicking what we do. This might be annoying when they do it with us but is critical for their long term health and growth. It is also not surprising that a child with a disability would advocate with us first because we are safe people in their lives. Later in life our children will be able to tell people in the world what they want or need. They will even be able to do it when they know other people do not agree if they have seen parents and others do it. When we as parents are gone this will be an important daily living skill our child will need.
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