Sunday, February 27, 2011

Being A Good Influence

Sometimes the different agencies that work with my daughters and myself amuse me. As I might have mentioned before the oldest daughter gets services through my state's Home and Community Based Waiver. The younger daughter does not qualify.

It has been more of a challenge to find services for her, particularly at 17 years and now as an adult. Fortunately some of the qualities of Aspergers has been helpful in getting what in our state is called Mental Health Rehabilitation Services or MHRS.

The amusing part has been a series of questions I have gotten from the case worker and the therapist. We get both with MHRS in our state. It seemed they were trying to decide if I was a good influence or not. At one point I told a fairly new therapist to call the case worker and ask her.

I believe from the therapist questions my daughter must have been telling him how mean I was. It took serveral conversations to get him to understand that she believes I am mean because I expect my youngest daughter to do what she is supposed to do.

I had to explain she took off for Michigan. She called me cold and crying. She took the money I sent her and went to Arizona. While on the way to Arizona they hit a snow storm and she was afraid she was going to freeze to death in the back of a moving van.

When I called her one day I figured out they were panhandling. I sent her money to bring her, the boyfriend, and the boyfriend's family back here. I told him about her dropping out. I also mentioned how with her we set up adult GED classes. She went twice. The lady even offered to work with her one on one and she wouldn't.

I supposed the therapist finally called the case worker too. We are all on the same page again. I suppose part of the problem is that in roughly 8 months we have had a multitude of case workers and therapists. I have to do this with each one.

Maybe they could read the file though, ya think?

Friday, February 25, 2011

My Techniques

I do not know that I have ever explained what I am doing with this blog. I hope by telling stories about our lives that people will gain something. What that something is changes at times. Sometimes I hope it is understanding, sometimes maybe just the knowledge that someone else is having similar challenges.

I love it when people comment or ask questions. That seems to be a little easier on Twitter or Facebook than on my blog. But it is all good. I do consider my blog where I put my best stuff though. So tell your friends and come back. I love to see ya'll.

Wednesday, February 23, 2011

One of the hardest things about being a mother, let alone a mother to a daughter with Aspergers, is letting them learn their own lessons. Although she is an adult and of course I have know her all her life I still find myself mystified by some of the things she does and says.

It is obvious to me that everyone but her boyfriend does not care for her. She lives with the boyfriend, his 14 year old sister, their grandmother, their mother, and the mother's current boyfriend. Rose talks about how the mother's boyfriend does not like her and wants to get rid of her.

Rose came to spend the night last night, which was wonderful. When she explained to me how the mother's boyfriend was trying to get rid of her, I felt so bad for her. But then at some point I realized she did not care. At first I though it was a lack of Social Skills then it is like she just did not feel it.

That should not surprise me as I have noticed it with my oldest daughter who has a more traditional Autism. It is just like when they do not know what to do with a feeling they just cut it off and do not feel it.

I'm amazed. I wanta learn to do that. Maybe. Do your children on the spectrum do that?

Monday, February 21, 2011

Asking for Help When You Have Autism

I'm always interested in Independent Living Skills and what that means, particularly for someone with Autism. I always wanted my daughters to talk so they could tell me if they were hurting.

At some point I realized it was important for them to be able to ask for help. That was a revelation. I do not like to have to ask for help. At all. Ever. Maybe it is the society we live in that tells us asking for help is a sign of weakness. I'm not sure.

Asking for help is one of those skills we need to learn as parents, as parents with disabilities of our own, and as people with Autism. When I think back it is one of those things that I would have taught my child earlier.

Saturday, February 19, 2011

Self-Advocacy: Where Do We Start

I have had self-advocacy on my mind alot lately. I suppose it is because I see alot of what my oldest daughter accomplishes since she know how to advocate for herself. I have also been thinking about how we got to this point.

It is going to sound funny but we started so simple. Somewhere early on like 5 or 6 years old I realized that Dominoe did not make choices. Choices my oldest two boys had been making since as early as 3 years old.

Choices like which shirt or which pair of socks. Dominoe did not do that. Now in all honesty argueing with the boys over which pair of pants was a real chore. It also seemed important that they could do that.

I started presenting Dominoe with limited choices. It was things like the red shirt or the blue shirt. I had to wait because she did not want to choose. I even had to have them both in my hand so she could see them before she could choose.

Gradually she started to choose though. Eventually over the years she could choose types of food. Later still she could choose bowling or the movies. Now she can choose working at Burger King or working at Walmart.

Making choice is probably the single most important skill towards Dominoe learning self-advocacy skills. She learned she was supposed to choose. She learned to make choices. She also learned the consequence of those choices.

Thursday, February 17, 2011

AutismSpeaks Transition Tool Kit

At one time everyone I knew was sending this tool kit out. It is basically an ebook by AutismSpeaks. For the most part the ebook was very good. I am disappointed that the residential section is promarily about placement as an option.

There is just so much more out there. I know the waiting list for the HCBS waiver is long in our state. People are waiting 8 to 9 years but it has been a life saver for us. The HCBS waiver is given a tiny paragraph in the residential section.

I do have to say the section about self-advocacy is very good though. I was amused at it. Sometimes you do not know what you are bargaining for when you teach a child with Autism to self advocate though.

At some point I had learned that children receiving special education services could stay in school until they were 21 years old, if they needed to. I had always assumed my oldest daughter would. Imagine my surpriese when she told me no she was not.

I tried everyway I could think of to convince her it was a good idea. I told her it would be something to do. She would miss her friends and anything else I could think of. No dice, she was not having it.

At the beginning of the next school year she said 'No more school?' and looked a little worried. Even though she had exited and walked with her class I told her we could go back and she said NO.

I suppose here 3 years down the road I am amused. I still believe self-advocacy is the way to go but you might not always like what they advocate for! Isn't that what all of our children do eventually though???

Tuesday, February 15, 2011

Direct Support Personel

As I think I have mentioned before, my oldest daughter how what in our state is called a NOW Waiver. In other states it might go by different names but on the national level it is called the Home and Community Based Services waiver or HCBS waiver.

With the NOW waiver we have staff that go into Dominoe's house around the clock. Not everyone needs staff around the clock but she does. Anyway those staff are called Direct Support Personel or DSPs.

Dominoe called me on her cell phone. (The best Christmas present in a long time.) She was pretty wired up and chattering about not liking the way the DSP was doing medicine. I knew that particular DSP had been trained, been dividing medicine for years, and had yearly training.

I wasn't really worried about the medicine but I was curious why she was chattering. At some point Dominoe is telling me she can not tell me because the supervisor will be mad and someone told her not to tell her momma!

Was I TICKED. Finally I told her that I would call the supervisor and ask. Dominoe agress. The supervisor did not know what was going on. I called Dominoe back and told her the supervisor said it was ok to tell me.

At some point Dominoe had gone to LRS to apply for services. We are trying to get her another job. There was a policeman and Dominoe was telling him he was in the way! Pnce I understood what was going on I could have laughed.

I can just see Dominoe telling a policeman that. I can just see a policeman puzzled at the way she was acting. What I'm still ticked about is that the DSP STILL think they can tell her not to tell me.

This has happened before. She always acts up and eventually tells me because it is stressful to he not to tell me. We have one of the better providers in this area. They should know better by now.

Most of our DSPs over the years have been good. Every once in a while I think they need a round of smart pills though.

Sunday, February 13, 2011

Early Planning, in Addition to Early Intervention

Every day I run into parents of older children with Autism who are having trouble with getting help for their children. I keep trying to figure out why it seems easier for my older daughter to get help.

I have finally decided it was partly because we got on every list available for a child with a disability. At times I was not even entirely positive why we were doing what we were doing.

I can remember when someone suggested SSI my response was that we could take care of my daughter. It was not until someone told me I could get a medicaid card that I paid attention.

We were not getting enough of speech therapy in my state's Early Intervention or then Part C program. My daughter needed speech therapy that I could not afford. I could use the medicaid card to get it.

Anyway, today when I run into a young parent of a child with Autism I tell then to get on every list and program they can. Even if at some point they do not qualify at least they did not have to wait years for the chance.

If their child does qualify and things get so much better they do not qualify, most agencies are quite willing and happy to then withdraw services.

It's sort of like playing in the mud. If I'm going to play on the edges of the mud, I'm going to get mud all over. I might as well go straight out into the middle of it.

If I'm going to need services to help my child at some point, I might as well start doing what has to be done early. Then at least I or she has a choice. My momma taught me to plan for the worst and hope and pray for the best.

Friday, February 11, 2011


One of the things I have to keep reminding myself of lately is that I am the keeper of my daughters' strengths. It's so easy to get bogged down in levels and diagnosis and deficits. I just forget.

The system to get services for my both my daughters is built on looking at those types of things. The same way that no one knows them better or longer than me, no one knows their strenghts like I do.

Even now or maybe even more importantly now as adults I have to keep being the keeper. They can't do it yet. Maybe someday but not yet.

Wednesday, February 9, 2011

Sibling Rivalry

Sibling Rivalry is alive and well at my house. Even though the two adult children are out of my house. Part of the conversation with one of the children was about all the money I spent getting one of my daughter's back from Arizona.

Basically my oldest son was telling me that my youngest daughter had won. She went to Michigan and then to Arizona on my dime. While I agree in part, I also feel I won. Ultimately she is here not there (where ever there might be). I also have more influence with her if she is closer.

He kept after me about all the money I had spent. I reminded him that his children were young. I also told him that giving a child money never happens at a good time. He says it's not about the money. I think it is but whatever.

The next thing he said was that I didn't let her suffer long enough!? I question whether her calling me because she and the boyfriend were in the back of a metal uhaul truck during a blizzard qualified as suffering. She was certainly scared enough. Particurlarly when they couldn't get the boyfriend's mother to pull over.

I also questioned whether her texting me that she didn't want to die when they were in the dark qualified. Granted I didn't figure it out because her phone died. But when I asked her what she was doing the next day her response was a shock.

She told me they were asking people they didn't know for money. I sent money for them to come back her. At some point I explained to her that what she was doing was panhandling and illegal. I suppose I could have waited till she had been arrested...

It's going to be interesting to see how my son handles things when his girls are older. Now his girls may not have Aspergers either so that might help him. I on the other hand can sleep at night.

Sibling rivalry is alive and well. :)

Monday, February 7, 2011

Aspergers Lessons

Sometimes you have to let a child with Aspergers hurt emotionally. I don't see anyway around it. If they don't hurt emotionally then there is no motivation to learn the lesson, whatever that might be.

As a parent I have had to learn to do it early in my child's life. It was kinder to let her learn while I was there to provide support. My daughter has her moments now that she stands up for herself. I don't know if she would have been able to do that if she didn't learn some lessons early on.

It is a lot harder now that she is an adult. The lesson's life is teaching her are harder for her to understand and deal with. Some days it breaks my heart. Other days when she stands up for herself, I feel so proud of her.

Saturday, February 5, 2011

Daughter's and Relationships

My second daughter was in the hospital, again. Well it is not really that bad this is only the second time she has had to be hospitalized. I'm just thinking. Both times it started with some kind of mess about a boy.

It is already hard enough to be a young woman. She is 18. But it is even harder to be a young woman with Aspergers or Autism. Both of my daughters are really obsessive over their boyfriends.

The one that was in the hospital was only there for 3 1/2 days. I'm not sure that short of a time really did anything for her. She was the youngest person in the adult ward and she looked it. They had her in a room with a camera directed at it.

At least she isn't screaming any more. She had a knife when the boyfriends mother called me. Everytime she saw me she started screaming. I told her the last time she threatened suicide I would call the police to have her hospitalized.

I have to follow through on those types of rules. You know the whole black and white thing. If she thinks rules are grey then she does not realize she has to follow them.

I'm also planning on talking to her case worker about some training on healthy realtionships. It probably won't help much now but maybe she will internalize it for the future.

Are any of ya'll having these types of problems yet? Do your children see the world in black and white? I have learned to use that quirk of Aspergers to help my child.

Wednesday, February 2, 2011

SSI Check Amounts

My daughter tells me her boyfriend is supposed to get a check of $1000.00 to $2000.00 from social security. We were discussing it a little. She knows it is because he has seizures but isn't exactly sure of anything else.

I mentioned that the SSI checks in Louisiana, at least, were around $670.00. We also talked about whether he could be drawing on his dad for any reason. My daughter told me his dad had also had bad seizures.

It will be interesting to see how the change in finances in that family affects the way they live. Well and how they treat my daughter, especially when or if she returns from the hospital.