Autism Classes and No Child Left Behind

A lot of the parents, raising children with Autism, struggle when discussing placement in the school system. Some of the families and the educational professionals believe that the ideal placement is and Autism class.

An Autism classroom is usually in an ordinary school. The idea being that your child has access to typical classrooms and typical activities. My experience is that most children in that type of class spend the majority if not all of their day inside that class. They do not really get to experience the things going on in the rest of the school.

This makes for some interesting situations. A lot of the parents of children with Autism in these classrooms find that their child is calmer and gets into less trouble. They also feel like their child is teased less. Those things may be true.

Unfortunately your child may be missing out on a lot of important and necessary things as well. The children spend a majority of time in a classroom with other students with Autism. There are more staff in those classrooms and sometimes other people in the school just see a child that is in that classroom as those teacher and aides responsibility.

I found that the more my daughters were around other students who had processing disorders, problems with self-stimulations, and difficulty communicating they had these difficulties more. I also have spoken with other parents who in hindsight have made the same observations.

Where it becomes more critical is when academic expectations are changed because a child is in that classroom. If a skill or concept is difficult to learn many times it will be left out of the teaching process.

An important example is No Child Left Behind and children with Autism. One of the important effects of No Child Left Behind (NCLB) is that all children are being tested. After all we test and examine what is important to us as a society. That is a value that with NCLB carried over into the school system.

Unfortunately because teaching children with Autism testing skills it difficult it a lot of times had been left out of their programming. Even when a specific child had the intelligence and skills to learn the material those skills had been neglected in the Autism class.

Your child may have still gotten many other accommodations that they needed for standardized testing. Extra time and staff support routinely is provided. Unfortunately those things do not help the child with Autism understand about bubbling in those little circles. Then our children are doing poorly on the test even though they might know some of the information.

The funny thing is that ALL children are learning these skills in the typical class. As a matter of fact they generally are practicing them several times a day in different subjects. To me that was a major reason that my daughters with Autism needed to be in typical classes. It was not the only reason but it was a large one.

Autism: An Innie or an Outie

One of the hardest things I run into is the difficulty of people who do not have children with Autism to understand children on the Spectrum. Just recently I even ran into a professional that said just because a child could look her in the eye the child did not have Autism.

As any parent of a child with an Autism Spectrum disorder can tell you, children and adults with Autism can, at times, look you in the eyes. It is just torture to try do it all the time and should not be expected. It is not necessarily even a skill that should be high on the list to learn in some people’s lives.

I also run into people on a regular basis, that just do not believe their child with Aspergers has Autism. I will probably upset many parents with these comments. Just because Aspergers has some different characteristics or responds to different techniques they believe their child is better or more elite.

Since I have daughters with both Autism and Aspergers I get to compare the two on a regular basis. Children with Autism usually do not like to look at people. They like things quiet and ordered.

A child with Autism may not like people touching her stuff. They may or may not look you in the eyes at any time. Many children with Autism have difficulty getting what they want or need across to another person.

A child with Aspergers is the same but different. They like life busier, but may respond better to structure. My daughter with Aspergers likes things jumbled and bright. Many children with Aspergers will routinely look you in the eyes, unless they are stressed.

If a child with Aspergers is stressed they like to keep moving and be difficult to get to focus. Children with Aspergers can overwhelm everyone with words. They are trying to communicate what they want or need so hard that it gets lost in the words.

When I watch my daughters they remind me of the difference between an ‘innie’ and an ‘outie’. They are both a belly button. Depending on which one you see first you may not realize they are the same thing. In isolation they look drastically different. But…they are, sort of, opposites.

Remembering

I overheard a young mother, who has been an trained advocate for a while, ask another mom if there was a name for what her child had. It brought back memories of wondering if there was a name for what my child had. I didn't know anything back then. Let alone what Autism was.

This post was stimulated from one of the blogs, Achieving Extraordinary Success, I read and enjoy. You can see it here. Hopefully the link works...

Hello,
Hmmm. I'm definitely one of the parents that continue to blog about the sorrows and more importantly the joys of raising two children with Autism. I guess the reason I do it is because I don't find alot of parents with adult children on the spectrum continue to blog. I also have typical children. One of the things I have learned is that parenting isn't over once any of my children has become adults.

It has changed dramatically. I have become more of a consultant than a teacher at this point in all of my children's lives, well except maybe the last one. (Almost though, he’s 17 years old.) All of them, except the youngest, live on their own. This includes the ones with ASD. Given that I still am involved in their lives, I still have something to blog about.

I baby sit my grandchildren. I still manage the extensive services one of them receives. I try to keep the 18 year old focused. I’m still raising the last one, sort of. I’m kind of busy for a hobby. Oh yes, I also work as a disability advocate for a living and am on at least one group working on Employment for people with developmental disabilities, like Autism and Aspergers.

So maybe you can answer a question for me. I read several blogs by adults with Autism Spectrum Disorders. At least a couple if not more of them are really antagonistic towards their parents. I’m at a loss to figure out why. We did this before our children are able. We do this when some of our children are not able to do it.

Please, really, explain. I definitely would not be doing this to hurt my daughters. And please don’t lock me off your blog, I really learn from it.
Thank you!

2nd time post

Sorry if you got this post twice. My link didn't work. God Bless the people who point those things out to me. I'm not very good at computer stuff. Thanks!

Relationships Good or Bad

Does anyone else have a son or daughter with Autism Spectrum Disorders that is in a relationship with someone? How does that work? I don't want my daughters to be sad and they both are in a relationship.

The oldest one has Autism and when she doesn't have a boyfriend, she's sort of sad. The second one lives with her boyfriend and it is decidedly different. I'm just wondering how this works for other people with Autism or Aspergers...

Something happens when I take the daughter with Aspergers to the doctor. I take her because even though she lives on her own no one else will take her. Well and because she's my daughter of course. I want her to get the best medical care we can get.

Anyway the daughter with Aspergers is very verbal. She can narrate things that happen in great detail. She is also very good at answering certain questions. Unfortunately when we go to the doctor he tends to word the questions in such a way she can not answer.

Yes, the words are more complicated, but it is more than that. The doctor's questions are too general. He might ask 'How are things?'. She would say 'Just fine.' I know he wants to know more than that and might prompt her about trouble sleeping.

Then the doctor might talk about the difference between falling asleep and staying asleep. He might pause then and wait for a repsonse. She looks at me and I tell her that he wants to know which is the problem falling asleep or staying asleep.

She can answer that question. It has to be worded pretty specifically and said verbally. She won't just volunteer the information. This is just one instance. It has happened in many different situations. I think it is part of her Aspergers.

I suppose what I'm wondering is if anyone else has noticed this with their child with Aspergers or Autism. It seems to be something about the way they communicate. Both of my daughters do it.

It is just so much more confusing with the daughter with Aspergers because she is so verbal and does answer the correctly worded question so well.

Getting That Diagnosis Good or Bad

I like to read other people's blogs. I really like them, especially ones about Autism and Aspergers. It was with great relief that I read a blog by 'thoughty autie'. The specific post is here

You see, I have this worry at times. Basically I wonder, particularly with the child with Aspergers, if I should have ignored it. Or maybe hid it. I was determined to find out what was going on.

If anyone knew what to do to help her, and her sister, I wanted to find out. But sometimes I wonder that if maybe I hid it, maybe, just maybe, she would have been able to fit in better. I also wonder if at some point in time one or both of the girls will hate me for being so insistent.

Then I read the post above. She talks of the struggle she had when she was younger. The struggle of trying to conform to what other people thought she should do or be. Now with her diagnosis she can be herself. That's what I want for my daughters with Autism. To be happy and be themselves.

I recently did a workshop about special education issues. I got to talk about my daughter with Aspergers. At different points in a variety of my workshops I talk about several of my children.

Some how at one point during the workshop we started talking about how hard it is to get a child with Aspergers to be organized. My child in particular did not like people touching her stuff. She still does not.

We were talking about the fact we know homework gets done. We supervise it being done. We know it gets into the booksack and our child still gets a zero. I shared one of my strategies.

Since my daughter did not like anyone touching her stuff, including the booksack. I worked with the school system to put a goal on her IEP about organizational skills. Once a week a teacher would sit with her to go through the booksack.

In elementary school the daughter with Aspergers would sit on the floor by the teacher's desk and go through it. That gave my daughter the opportunity to talk about what each paper was. My daughter loves to talk. Does your child with Aspergers love to talk?

Anyway, when they came across homework or an assignment that had been completed, the teacher helped my daughter make sure it got to the right teacher. If the homework or assignment was not completed the teacher 'saved' the paper.

The saved papers were given to my daughter one by one over the next week to finish. They also had a trash can right there to get rid of the papers they decided were trash. What was left went back into the booksack.

Wonderful strategy for us. It was an organizational skill on the IEP so no one was upset. I did not have to argue with teachers about the fact that she should learn to turn in her papers. Completed work got where it was supposed to go.

More importantly no one upset my daughter by touching her stuff. I do not know if she learned to organize this way because of the practice. Maybe with the Aspergers she was going to learn to organize on her own. But she is really good at it now.

Being the Person Responsible

A friend told me about helping his brother. His brother had gotten SSI many many years ago. At some point the brother got a job and eventually lost the SSI. My friend talked about how rewarding and validating it had been for his brother.

Well in this down economy the brother lost his job. My friend has his brother living with him while they try to re-establish SSI or find another job. I remarked that I did not know if any of my children would do that.

My friend looked at me and in all ernestness told me, "Not as long as you're in the way." In a spit second I went from shocked to laughing. You know he is probably right.

Employment First

I went to the meeting about our state's Office for Citizens with Developmental Disabilities Employment First Initiative. I was there as a parent of a child with Autism. We spent the entire day coming up with major goals to move our system in that direction. We even had time to flesh out the goals with steps.

Different comments amused me during the day. One of the comments was that employment should be one of the first things that everyone looks at. One guy said, "After all I was never given the option of getting a job or not."

Now before everyone gets upset, it is true isn't it? Yes I know that there are issues to work through like how to plan for losing part of their SSI checks and making sure people do not lose their medicaid eligibilty.

After all if you lose medicaid eligibility your child may lose waiver services if your child has them. But their are ways to plan for these issues.

I have said it for years. A job, any job, no matter how small gives someone something to build their life around. It gives them something to think about and a boost to their self esteem.

I definitely want both daughters with Autism, well and anyone with any disability to be able to experience those things. Who know it could help with their behavior in alot of ways. I know people that it has helped.

Sometimes the hardest lessons for a child with Aspergers to learn are the ones best taught by letting her feel it. If she does not feel it in her bones she just does not seem to remember it.

The thing that surprised me about having a child with a Autism or any other disability was that there wasn't a list or a menu of the things you might need. My goodness there wasn't even a list of the government programs that might help.

Sometimes you do not even know the right questions to ask. Having a list of programs for a child with Autism might have at least pointed me in the right directions. It's like everyone was afraid to have a list because then people might ask for that kind of help. And yes the costs would go up.

I know some wonderful parents of children with Autism have put together lists of possible therapies. The general public believes that there is a list or 'programs' to help parents of children with Autism. Yeah, and they all get a government check too--not.

I am excited about the Employment First Initiative in our state. I just got invited to sit on a workgroup with our state's Office for Citizens with Developmental Disabilities. Our state recently went to a system of waiver services that is based on levels of care.

At this point there is a tie between the level and the budget amount for services. One of my complaints was that the manual for these changes talked about day programs. I even at one point told one of the administrative people in the state that I was offended that employment wasn't at least mentioned in that box first.

I realize not everyone will work a 40 hour week in 5 days. I am not sure my daughter will be able to work more than 3 hours a day twice a week. We tried 4 hours a day for 5 days a week and she could not do it. The behaviors she has with Autism got unbearable.

But she deserves to have work to build her life around just like everyone else. It might look different for her but she deserves a chance. Like I said I am excited about the Employment First Initiative.

My youngest daughter got approved for SSI as an adult. She has Aspergers. I'm glad. I think.

I remember going to a regular doctor appointment. She was 17 1/2 years old. He sent her out of the room and asked me what we planned to do. In the conversation he told me to go apply for SSI for her. I remember telling him I did not want to.

I did it though. She qualified after about 4 months. She did not get a check for two months and only part of a check a couple months because I made too much money. A couple months after she turned 18 years Social Security started the process of deciding if she still qualified.

I was on pins and needles. I was not sure if this daughter would qualify. She can do so much more than my oldest daughter. The oldest one has Autism and all the behaviors that go with it.

I hear from the youngest daughter every day, several times a day. She qualified.
At least it gives her a base to live her life. I still hope and will work with her to get her to work someday. I'm just not sure how I feel about it.

When the economy is flush it seems to be so much easier for a person with Autism or any other disability to get a job. It is easier to carve out the parts that other people find boring or that other staff that do not do well.

Many times those are the tasks people with Autism do well and do cheerfully. But those jobs are the first to be cut or absorbed. There are also other ways people with Autism lose jobs. There are just wrinkles to this that bother me.

I talked to a friend who happens to have a disability. He talks about people with disabilities being out manuevered for jobs. He particularly was talking about people who had physical disabilities.

Their jobs are being absorbed because they do not move as fast. Goals that an able bodied person can do take them longer. At least that is what he says. It can be done but it takes longer.

I suppose what bothers me is that while I do not want to dilute a job to make it easier for someone that has Autism or another disability, there also needs to be a place where we let keep people in their job.

Ok, the more I think about it the pissier I get.

Getting To Be An Older Young Adult with Autism

I was thinking again about the oldest daughter, Autism, and the differences in her lately. Part of the changes I see in her are probably due to the growing up process. Although at 23 years old she is not growing up the way she did as a child, anyone with adult children knows they are still growing up.

I have two boys older than the girls and a boy younger than the girls. Right about this age the two older boys made some dramatic changes in the way they thought too. It just looked like a clearer process when they made a decision. Their thinking was so much more solid.

Alot of time I talk and think about Independent Living Skills and Autism Spectrum Disorders for my daughters. But we all need and use Independent Living Skills. I am so pleased at the way even with Autism the girls progress and go through the steps of owning their lives.

My oldest daughter came to spend the night because they were doing updates on the electricity at her apartment. The electric company was supposed to do it before but they did not.

Anyway there was a community dance we went to. I did not feel good but her boyfriend was going to be there. The boyfriend is older and has broke up with her several times. He tells her he is taking her back. Well, I'm not happy about that, but she is so satisfied with herself when it happens--what am I going to say?

At the dance she was so happy. That's another thing she is so happy when he is around. She laughs and giggles and dances. She also forgets to call me but again what am I going to say.

One evening when I called her she told me she had to get off the phone because she was waiting for him to call. I guess I got bumped. lol I paid for her cell phone bill so I can talk to her. How is that for Independent Living Skills? If she is too busy to talk to be I'll pay for the cell phone.

But she is just different when she has a relationship. She communicates differently. She is more outspoken. Usually when I ask her where she wants to go out to eat she just shrugs. Now she tells you what she wants...

How do ya'll handle relationships? Are your kids even old enough? Please let me know.

Book Review

Since I have two daughters with Autism Spectrum Disorders I have always been interested in the discussions of vaccines as a cause of Autism. Although I know there were ways to get exemptions I did not know a lot about it.

I was excited to be able to review the 2007 updates to the book ‘Your Personal Guide to Immunization Exemptions’ from Dorrance Publishing Company. This book is full of information on how to approach the hospital, the school system, child protective services, and a wide variety of other agencies and situations.

In each instance there are strategies and advice on how to get your needs and desires met. This is described with an eye towards keeping the situation non-confrontational and professional. There is advice on when to discuss and who to discuss the issues with and when to extricate yourself and go to the next person.

I found the book to be a very informative read, particularly on custody cases and children’s health rights. You can get the book at this link:


Although I was given a copy of this book by Dorrance Publishing Review Team in exchange for the review, I was never told or required to write a positive review. Visit dorrancebookstore.com to learn how you can become a member of the Book Review Team.

The Boyfriend Is Back

The boyfriend is back. I can't get her to understand that he is not the best choice. She deserves to be happy and she takes him back every time. I do need to get busy and check when is the last time she took the birth control shot.

Of course she can have a baby if she wants to I ask her all the time. I'm also glad she says no. Working on keeping her in regular classes and in everyday life helped her learn about babies. She will tell you they are loud. Those independent living skills come in handy!

I guess this post really has nothing to do with Autism and everything to do with being a young woman...with Autism.

Aspergers and Confabulation

She does not lie and she is not lazy.

I went to the psychiatrist for my second daughter's SSI. It brought up all that anger from all those people, usually teachers, over the years who used to tell me she lied or she was lazy.

I have watched this child with Aspergers and now adult with Aspergers. She works ten times harder than any of my children to produce less than half as much work. I have watched it. I flat refused to let teachers or anyone else say any of those things.

Lying is a deliberate decision to tell something that is not true. She believes what she says. The psychiatrist today said what she does is a 'confabulation'. She believes it but it is not real or not really what happened.

I need to remember that word. I asked if I would get a copy. The psychiatrist said he did not think so because the federal government 'owns' it. Hmm I wonder how I can work on that.

I really need to get better organized. DD needs to go downstairs at her apartment building to get her lunch. Someone from the apartment complex goes to get the lunches for the elderly and disabled. But she has to be down there by 10:00AM.

If she is not down there then she will miss it because the lunches go quick. I forgot yesterday. Even though the DSP is there if I do not remember it does not get done. I figure since not all the DSPs cook they need to go get the food. Besides the fact that if her stomach is full the behaviors are easier for her to control and the medication works better.

She does not eat with the other people though because they complain about the food. Then DD does not want to eat it. One of the autistic behaviors she has is mimicing the people around her. The food is perfectly good. Just like if someone cooked. Some days a little spicey or salty. Some days better than others.

I am just amazed that even though she is an adult, in her own apartment, with a DSP, I do the remembering. Does anyone else have this experience?

My oldest daughter recently had an appointment with Louisiana Rehabilitative Services (LRS). I met her and her DSP there. Mostly because I had sent them by themselves once before and it did not work right. But that is another issue.

Anyway the appointment brought it to my attention, again, how different my daughters are even though the both have Autism Spectrum Disorders, ASD. Part of the testing at LRS was cognitive.

The oldest daughter know alot but there are holes in what she knows. Or at least that is the best way I can describe it. She knows this but she does not know that. Then at some point you realize the holes get bigger and bigger.

The second daughter also knows alot, actually a whole lot. There are just cracks in what she knows. At first you do not realize it. There might be one little part she does not know.

It's not until you start to press her on what she knows till you realize how wide and deep those cracks go. She does not know what to do with what she knows. Like she might know HOW to wash her hair. She does not know how to make it work for her.

The other thing is she does not believe she has to even wash her hair. The soap and water hurt. It's sensory. I understand it bothers her that much. She just does not get that her hair is dirty, unhealthy, and or might bother other people.

That is part of the problem, people think she does not want to comply. Her lack of understanding is so much more complicated that that.

Speech Therapy Is So Much More

Just recently when my daughter's apartment was supposed to have a scheduled electricity outage to upgrade the system, she came to spend the night. The next day we were running around and I had to go to the office for a little while.

One the porch to the non-profit where I work there is a stand in one corner with a cement statue of an angel. My daughter saw it and started laughing. She said, "You better hide that statue, grandma's gonna steal it." I was definitely surprised and even got her to repeat it.

My mother collects angels but DD#1 probably has not seen her since Christmas. Even then we were not at grandma's house for the holiday. I supposed all those years of speech therapy paid off. We had to call grandma and tell her about the statue.

For years I tried to get the speech therapist to teach her to chit chat or to notice things and comment on them. Sometimes the therapists understood and sometimes they did not. Some years my daughter did better than others.

I suppose she learned to notice and comment more than I thought. Just as an aside I also worked with the speech therapists to get them to unders stand they were the beginning of reading for my daughter. The vast majority did understand. Other speech therapist thought I was out of my mind... :)

My daughter with Aspergers asked me if I missed her. Of course I do. She then told me she would come home to spend the night Friday night. Hmmm. I'll have to remember how that worked.

She thinks she is helping me. She is more willing to do what I want when she thinks she is helping me. I forget that she and the daughter with Autism sometimes feel what other people feel more than what they feel. That must be a talent. Other people do not seem to do that.

The Youngest Teenager and His Sister with Aspergers

My youngest son surprised me last night. He is the last one at home. The sister right above him has Aspergers. They are only 16 months apart. When you add the fact he is the youngest, she has Aspergers, and they are so close together, it was pretty rough at times.

For years he believed his sisters were cheating because they got help at school. At times I have accessed counseling for the girls. I was blessed with a counselor that believed the family should work as a unit. Therefore she might work with any combination of the girls, my self, and my sons.

She helped me get the youngest son to the point he understood his oldest sister with Autism needed the help. She got him to understand that her world was small compared to his, even though my son was only 8 years old then. It never worked with the sister with Aspergers.

He just did not believe it. Still does not here at 16 years old. He came home from his part-time job last night fussing about one of the workers who did not do all of his job. Then, this is the surprising part, he said that he could cut him some slack because this other boy was sor of like the sister with Aspergers.

I never said a word. I will eventually but he was already upset than more than one of his co-workers were not pulling their weight. It just was not the time. I am just so excited this was a definite change in attitude.

Electricity Outage update

God Bless my daughter's support system. One of the people called the television about the electricity. Another person called the city councilman. Today we all got calls that the electricity would not go off.

Of course being my suspicious self, I will still bring my daughter home for the night. Just in case...

It is not that we do not want the Electric company to update their system. There just needs to be a plan in place for what the people who have no family or friends can do. I did a little investigating there are eight floors with 30 units on each floor. That's just alot of people who need a plan.

My Life As An Advocate

I feel the constant pull of being a parent with a child with Autism and being an advocate for people with disabilities. Today is a case in point. The electric company is turning off the electricity at my daughter's appartment complex. It will be off from 4AM to 1PM. She lives on the 6th floor and will have no air or elevator.

I had already confirmed it with the electric company before I called the provider. The electic company is upgrading their system. I called the provider and made plans to get my daughter the night before. I will bring her to my house to spend the night.

In the course of my discussion with the provider they reminded me of all the people who lived in the upper floors of the apartment who used wheelchairs or are elderly. Not all of those people have family to go to. Myself and a friend have been calling various people about it but everyone says it is not their responsibility.

I suppose I need to call the news station but all of this takes so much time and energy. It's not my responsibility. But this is what you find yourself doing when you have a child with Autism or any disability. You become an advocate and do all kinds of things you never thought you would do.

Employment for People with Autism

Although I attended a very interesting 2 day workshop on employment for people with Autism and different disabilities, I was disappointed.

I wish I could find someone who could tell me how to make it work better. What I did understand was there were alot of states trying to figure this out.

The up side was I did learn the term 'situational assessment'. I have asked for one of those for my daughter. Autism did not keep her from having a little job once before. I'm not giving up.

The situational assessment is something the Vocational Rehabilation Agency should do. We'll see.

Autism Services and Independence

I have been having an interesting discussion about the Supported Independent Living (SIL) services for my daughter. It's one of the services available for people with Autism and other developmental disabilities.

During a discussion about the small change (nickels and dimes)her grandmother gave her the provider told me some interesting things. The supervisor said they had to count every dime. More importantly she told me it was part of the program.

I told her at the time I would check. Since the program is part of the NOW waiver in my state. I called the local office to ask them. They told me it might be for her safety and the safety of the provider company.

Eventually after I made it clear that I wanted to see those rules in that part of the program the local office said they would talk to the provider.

Eventually the NOW office called me back to tell me that it was part of the provider's rules. The NOW office told me that it was because she had staff in her house with her. I understand.

Really I do. But how intrusive. At some part I asked the person at the NOW office who counted her change. No one counts my change. And I do understand, but...

Aspergers Services

As I am sure you know many times it is harder to get services for someone who has Aspergers. They can function so high that they do not qualify for the more comprehensive services that a person with an Autism Spectrum Disorger should get.

We were able to get what in our state is called Mental Health Rehabilitation Services (MHRS) for my daughter who has Aspergers. One of the continuing conversations I have with my daughter's caseworker and counselor is whether DD is taking her medication.

They do not seem overly worried about it. Although I understand completely that they can not make her take her medicine I still think they should know when she is not. I also think there should be more that just asking her if she takes it.

A discussion behind the reasons a child with Aspergers or any other disability refuses to take their medication could give everyone involved some useful information.

Insight into her reasoning might give us some understanding of 'immature' though processes. It also can give us a greater understanding of her understanding of her medication. If her understanding is incorrect in some way that might be a huge part of the problem.

Those same discussions can be used to teach her strategies about remembering to take the medication at different times of the day. Medication discussions can also be centered around the best times of day to take certain types of medication.

Some medication does not work when mixed with certain foods. Other medication might work better after meals or at the beginning or ending of the day. Information about side effects and what might help with those would be useful. All things that someone should know about their medicine.

I just see the area of medication management with a child with Aspergers as so much more than it is. I also do not see her as being able to initiate this type of discussion. Am I being unreasonable?

Evaluation

We went to the evaluation in the school system for my granddaughter. I suppose the good news is that they did the ADOS and do not believe she qualifies under Autism. I was not present for that part. She will qualify under Speech only at this time.

My daughter in law did not realize how far DGD was behind though. I kept trying to lead to it without being too in her face about it. She kind of fell apart after the evaluation. She finally told my son how much trouble she was having.

At some point she had been falling apart after seeing the Educational Diagnostician or Speech Therapist in EarlySteps. Then she would get it together and figure out how to present it to my son in the best possible light.

It finally got to her with the school system evaluation though. I have not mentioned to either one of them that although the school system evaluation may not show Autism and medical evaluation might. I do not know.

Grandchildren and Disability: The Battle

I have 5 children but I also have 3 granddaughters. I love them all very much. It is always heartbreaking to have a child with a disabilty, any disabilty, Autism. It is even more heartbreaking to come to the realization that something is going on with a grandchild.

I had noticed between one and two my last grand daughter dis not speak alot. As that year went on I became more and more concerned and mentioned it to my daughter in law and my oldest son. I was told many times she was just a little slow.

Eventually I realized at about two that this was not going to be an accepatable answer to me anymore. Because the response I had gotten from my son was pretty harsh, I started to talk to my daughter in law about it first.

Well, I have to admit, I started to lean on her pretty hard about calling what in our state is called EarlySteps. It is the early intervention program for our state. My son kept saying no and I kept insisting.

Finally I had to have a discussion with him that he had a mother who worked in the disability system and two sister's with disabilities. I feel bad because I told him I could not believe that he did not want her to get help.

We have finished the first year of EarlySteps. My granddaughter's speech has grown by leaps and bounds. We are in the midst of evalutation for services from our school system. Here I am fighting the same battle with my son though...

Do any of you have older, typical children? Grandchildren? Do you have similar problems?

Finances and Independent Living Skills

My second daughter has Aspergers. She understands more than the first daughter who has full fledged Autism. Unfortunately because she understands alot she can get into more trouble. It is a mixture of good and bad.

I want her to be able to do as much as she wants to do. Even with Aspergers, I want her to be able to handle all of her business. It is definitely easier on me. That said, I can see how her difficulty understanding social cues is making things difficult for her.

Case in point, she decided she wanted to get her check in her own name. She got one of the people she lives with to give her a ride to do it. Two months later she is calling me crying because SSI took the amount of her rent and utilities OFF of her check.

I spent some time telling her that she must have said something wrong in the interview. Of course she got mad and hung up on me several times. Why would I know what I was talking about? Finances are probably one of the hardest Independent Living Skills to teach any child, let alone one with Aspergers.

Now that might be some typical teenage behavior. She is the fourth of five children and she is 18 so I have seen typical teenage/young adult behavior before. Conversely the two oldest boys knew when they needed help.

Once she calmed down we had several on and off discussions about money and SSI. Aspergers is one of the reasons she gets SSI. It just worries me that everything I have put together for her will unravel.

After all if she could do everything she would not need SSI. What do you think? Does your child get SSI?

My Child with Autism Played Her DSP

I'm vastly amused. People think my first daughter with Autism is not very smart. They think she does not understand. They think she is not paying attention. They are so wrong.

She has skills I did not even realize she had. DD#1 wanted a coke. She told her Direct Service Person (DSP). When they got to the counter she told the DSP she did not have any money. The DSP told her she should have gotten some money today.

My daugher said she had the money at home. The DSP told her she would pay and DD could pay her back at home. When they got home DD did not have any money. The DSP was upset.

About this time DD called me and was fussing because the DSP was sitting on the couch not really speaking to her. I got the story in bits and pieces. Of course I fussed at my daughter too.

But after thinking about it for awhile, I wonder where did she see and hear someone do that. It was not me. DD#1 has been in her own apartment a little over a year now. She is with the DSPs a majority of the day.

DD also probably had to see that done more than once to remember it and be able to copy it. Like I said I am vastly amused. Right or wrong, DD has skills I did not know about. I wonder if this is what professionals mean when they say 'independent living skills'.

Does your child with Autism surprise you with skills? Are they listening even when people think they are not or cannot?

Sibling's Memory of Autism

It's funny what your children remember. I had two older boys before I had the two daughters with autism. I also have another boy after the two girls. One of the olders boys, his daughter, and his girlfriend were in for a couple nights.

They live about 2 hours away and do not get to see the daughter with full blown Autism very much. Well, they don't get to see either one very much. It's just surprising what DS#2 remembers.

DD#1 has echolalia or verbal tics. She also have appropriate speech on some level. It's one of those symptoms of Autism you hear so much about.

It is just sometimes the verbal tics are worse than other times. There are different triggers. The tics can depend on medication, environment, and a whole bunch of other things. But these repetitive phrases is what DS#2 remembers.

He talked about being able to hear his sister in the early hours of the morning saying "Here kitty, kitty. Here kitty, kitty." I had forgotten about that one. The latest one is "Bar-b-que, Bar-b-que."

Does your child have echolalia or verbal tics? What do your older children remember?

Autism Behavior: Scheduling

I was talking with a friend the other day. She has a child with Autism too, a younger child. She was frustrated because the child was having so many tantrums. He was losing it for what seemed like every day things.

After a few minutes I remembered things from when my daughters were much younger. With the magical power of hindsight I understand so much more now. At least on some days.

Anyway what I remember looking back it that my child tantrumed when there seemed to be no real reason to be upset. At some point I came to realize that those typical life events, like brushing your teeth, felt dangerous to the girls.

It was like they were being physically slammed by life events. For what ever reason, probably effects of the Autism, they could not anticipate brushing their teeth or hair every morning.

In a nutshell, my daughters with Autism could not feel the rythym of life. So having to eat breakfast or put on shoes stimulated their fear response. The solution on alot of days was simple.

We had a visual schedule. One that the girls could physically interact with. That way in addition to being able to see what was supposed to happen next. They could feel finishing that small section of the schedule in their muscles and bones.

Does this sound familiar to anyone else? Does your child with Autism have unreasonable tantrums? The angry, protecting myself tantrums? Let me know what you think.

Behavior and Energy Drinks

The provider believs part of the problems we have been having with one of my daughter's behavior in the evening is Energy Drinks. It seems my daughter has been drinking one every afternoon for awhile now. The provider thinks it does not mix with her medicine. What do ya'll think?

Blogging

I get busy with life and forget to write. I love to write I just forget. I did do 9 posts in April. I had only done 5 in March. I want to do 15 a month. Here I go again. :)

Aspergers Things That Surprise Me

I forget how resourceful my daughter with Aspergers is. She got in trouble in school when doing work because she would go from person to person to find the answer. She did not see that as cheating. Once she learned that rule about cheating, it was a black and white rule. Again typical of Aspergers.

Well she and I have been arguing about whether she can handle her finances or not. Even though I am concerned, she still surprises me. She wanted me to apply for food stamps for her although she wanted to be in control of her SSI check. I told her to figure out how to apply for it herself.

I also told her she would have to keep her food separate. Since she was living with other people I felt she needed to learn that rule. Once again I was trying to use that characteristic of people with Aspergers.

I admit I was more annoyed with her than anything and would have done it eventually. She kept asking people until someone helped her print the application and fill it out. She got a call for a phone interview and told me. We talked about what they might ask her.

That must have gone well. She got a ride from one of the people she lives with and brought the paperwork they told her to bring. She also already got the card in the mail. I’m happy to be surprised that she was able to do this.

I know many times people with Aspergers have trouble interacting with other people. One of the things I tried to teach and she learned on some level was to ask for help. Interacting with people does wear her out. When she’s done, she’s done till she can rest. I know that is part of the Aspergers. The asking for help was a learned Social Skill that is serving her well.

Autism Employment at a Fair Wage

I recently read a blog post from another country. It was on employment of people with disabilities. In that country the minimum wage was roughly $13.00. People with disabilities there are paid as little as $2.00.

They were talking about the fact that it was criminal that people with disabilities there were paid such a pittance. I agree. I am appalled when I look at the take home wage of people with disabilities in the United States.

Although our minimum wage is $7.25 the last time I checked, I know people with disabilities that are making 14 cents and 25 cents an hour. I know people with disabilities that shred papers, change trash cans, clean floors. I know other people with disabilities that do yard work, clean dining rooms, and roll silverware for restaurants.

They might get paid varying amounts, but not minimum wage. The small amounts paid in the United States is worse than other countries. In a society that is upset that work from this country is outsourced to other countries for small amounts you hardly hear about the small wage paid to people with Autism and other disabilities.

Autism Communication: Emotions and Non-verbal Communication Help with Behavior

Emotions and children with Autism is such a source of heart ache and confusion. We all wonder why our child loses control in line or while waiting or whenever. Over the years I have learned a few things about emotions and a child with Autism that have helped us. As close as I can tell, emotions help us make sense of the world.

For example, if we are good at doing something, like work or fixing things, we feel calm. Children with Autism stim with objects like the wheels of the car or lining up dolls because it makes them feel calm. Stimming is also like a nervous habit.

Twirling our hair or popping the plastic packing material from a box calms us. It works the same for children with Autism, they feel anxious so they stim to calm themselves. The only difference is that we are aware of the world and why we are doing what we do.

The world always seems to be changing and intruding for a child with Autism so they are more anxious. It helps to keep our faces calm and peaceful. Babies react if our face looks upset. They cry. It can work the same way for our children, but we have to tell them to look at our calm face.

They do not learn to do it automatically like babies. We have to tell them. It can help them feel less anxious. Getting my daughters to relax and be calm was also done by slowing down. I would slow down everything so my daughters would have time to notice and react.

I focused on one reaction at a time. For example, I would smile if everything was ok. Then I had to teach my daughter that a smile means it is ok. Next it might be shaking my head meant something was ok or it might even be the pitch of your voice that you could teach your child to react to.

One of my daughters did learn to read. We were able to match non-verbal communication or cues to text too. Just like anything else in life, if it does not work, stop it. Maybe go back later. Just spending time together is an important activity too. It teaches your child even when you do not do anything else.

You can do the non-verbal stuff with little games too. You might want to pass a toy around. The fun part is to pass the toy only when the next person smiled or whatever was the isolated non-verbal cue you want your child to notice. This also helped her to learn to wait. I could gradually increase the amount of time before I smiled. My daughter enjoyed learning to do the same.

One day I was cooking I had trouble getting the microwave to work. I am not sure why. My daughter started to get upset and tantrum. When she looked at me I had a blank look on my face and told her it was ok. She immediately calmed down.

Another time we were picking up medication. It was not ready. She started to cry. When I looked at her with a calm face and said it was ok, she relaxed. Years ago she would have had a serious tantrum over things like that.
Sometimes when all else failed and we had to wait somewhere, I let her verbally stim. In the scheme of things I prefer to play with her by verbally stimming than tantruming.

Looking for a Cure for Autism

Oh my, I slipped right into it. I started reading about a promising program that many parents of children with Autism are using. I became obsessed. Then I went back to that program with the Dolphins.

I am also trying to figure out how to go to Europe to get trained in that first program. Plane tickets, a week's stay, the registration... I do not have that kind of money. Obsession.

Breathe! I had not done this in years. At some point in the oldest dauther's life I had decided it was about the quality of her life, not a cure. Do not get me wrong I did believe and look for a cure when she was young.

But at some point it became about whether she was happy and loved. It just surprised me how quickly I slipped back into looking for a cure.

Parenting a Child with ASD

Did you get a book when you had a child? I didn't get the book with any of mine. There should be an instruction book that comes with a baby.

I sure did not get an instruction book with the child with Autism. If I had of it would not have done any good with the daughter with Aspergers. There should have been one with her too.

Even after 22 and 18 years I am not sure I could write and instruction book. I am still at the point I am telling our stories.

Service Personnel

It's a business arrangement. We can become very attached to providers, case managers, service coordinators, direct support personnel, personcal care attendants, etc. It is just important to remember that it is a business arrangement.

They are not our friends although we may all be friendly. They are not our child's/adult's with Autism friends either. Now that I think of it this is important to remember with teachers and educational professionals as well.

It' a business arrangement.

Autism and Alzheimers

I have a friend, Mary Ann, whose mother is getting steadily worse. She has dementia or Alzheimers. Well this friend worked as a DSP for me during a time when I desperately needed the help.

Mary Ann tells me regularly how thankful she is that she worked with my daugher. It is helping her in this time with her own mother. One of the issues Mary Ann and I discuss is keeping your options open.

The rest of the family does not understand or maybe does not want to understand how badly their mother is doing. She's not sick but she does have all of the willful characteristics of Autism and Alzheimers. She wants to take off, wander, and argue.

The family, ie the Circle of Support, do not want to get on any of the waiting lists for in home care. They need to have some discussion around long term supports. I describe this to the families I interact with as 'not leaving their options open'.

If you do not get on the various lists for help you do not have the choice of using it when you need to when your loved one's name comes to the top. OR of saying we want to go back to the bottom of the list because we do not need the help now. OR even of saying we want and need this little bit of services but no more than that.

I have the same conversation with parents of young children with Autism. If you do not get on the list now. You are not keeping your options open!

Blogging

Yes, I know I'm slacking again. I promised every other day. The words just take me by fits. Anyway I'm trying again.

Stages and Competencies in Children with Autism

Listening to parents in general talk about stages and competencies is interesting. The discussion is even more interesting when you have children with Autism. When you have a child with Autism, they don’t develop at an even level.

Typical children don’t develop at an even level either, but with a child with Autism the spread is so much bigger. Then when you add into it what peers might be doing it becomes even a larger spread. That's part of the reason why stages and competencies seem like strange terminology, to me at least.

What a lot of parents get to at some point is that it is ok to be at so many stages and competencies, just different. Sometimes it is a struggle for some of us parents (meaning me!) to get to that point where it was ok.

When my oldest daughter with Autism can tell I am upset, but cannot tie her own shoe I am not surprised any more. I gave up being frustrated or even worried about what other people thought about it too. What do ya'll think? Do you thing in terms of stages and competencies?

My Unofficial Look at Autism Therapies

Raising children is like a dance. From as early as a newborn parents stick out their tongue and the newborn baby does the same. While having a child with Autism eventually I realized I would have to teach her to dance. Something, I still do not know what, got in the way of our dance.

Anxiety is one of many things that get in the way of the dance when you have a child with Autism and Aspergers. One of my goals was to teach her how to adapt her surroundings to reduce the anxiety and get what she needed. Medication was also helpful for the anxiety. This was particularly important for my girls when they hit puberty. The anxiety sky rocketed.

Some parents use RDI or Relationship Development Intervention to teach a child with Autism to dance. Some of the parents who choose RDI believe that the program really unblocks their child. Then their child really can pay attention and participate.

Many parents in forums and list-serves are reporting that the process of slowing down and waiting makes a huge difference. Some people on the spectrum do not believe that is entirely true. They think the child is learning to adapt for a period in the child’s life. Time will tell as more parents have access and use the program.

Another program that seems to the favorite of some mothers of girls with Autism is FIE or Feuerstein’s Instrumental Enrichment. If I understand it correctly the premise is that all people can learn when you build on their thinking processes.

FIE recognizes what we as parents run into all the time, society in general expects very little from children with Autism and other disabilities. The program builds cognition building blocks. He has been so successful as to get hundreds of people with Down Syndrome in his country into the military.

The parents who use it say it is a paper and pencil program. The only reservation I have come across is that some people with Autism feel that they are being modified in some way without their consent or opinions. They would prefer it if someone would help them change in ways they want to change.

It is a hard line for me as a mother to not be so flexible that I do not want and demand better for my daughters. At the same time I want to be flexible enough to allow them to be who they want to be. I want to have high expectations for my daughters with Autism and their typical siblings.

I'm having some trouble partly in my mind and partly not with the services that support my oldest daughter. She wants to go to the state's Annual People First Meeting. It is in another parish and the provider has given me a list of explanations about why it is a problem.

The first explanation was that they had to get special permission for her staff to be able to take her. The more I thought about it the more I thought that I had never heard of that before. So I called the waiver unit and asked them.

They told me that there was no 'special permission' that they knew of. They did mention that it could be an agency policy or procedure. I'm thinking ok but... So my next question was "Isn't the provider supposed to support her to do the things she wants to do?"

The answer I got that time was to put it into the CPOC. That was an aha! moment for me. I knew how that worked from 16 years with this child alone of IEPs. I called the case manager and left a message within the next couple of hours about that.

Anyway when I called the provider again. I was having trouble getting anyone on the phone. As a matter of fact that has been a problem all week. I did get the regional manager and she told me she was waiting to hear back from risk management. She needed to know how to word the paperwork.

I heard back from the DSP supervisor later in the day. She is having trouble getting staff situated. She requested 2 weeks notice to get the staff lined up. I will bring Dominoe myself if it comes down to it but I'm still not happy.

All of this to explain, I guess I'm going to have to fuss. I hate fussing. I feel I'm pretty flexible. When they told me I had to pay $20.00 every pay period to get a copy of the staff notes.

I thought that was pretty expensive. But ok, I'm willing to pay $520.oo for the notes this year. But there is a limit to what the provider should be trying to tell me... This is the limit. But I hate fussing.

Autism Spectrum

I have heard a phrase the other day "fall off the spectrum". What a lovely phrase. I hope and pray it happens for some people with Autism. I wonder though. If you still have to use modifications and adaptations have you fallen off the spectrum...Just a lovely phrase though!

Staffing Notes

My oldest daughter has always had problems with behaviors. One of the things the state is requiring to keep her level of in home supports is a behavior plan. It has been difficult to get the provider to produce the documentation that is needed.

In an effort to make sure it is done I requested the Direct Support Personnels (DSP) shift note. That was an interesting story in it's self. But I read them! I am so amused by the wording. Nothing bad, I'm just amused.

Some of the things written are soo interesting. The DSPs sign in one after another and it is so enlightening to read what is done from one shift to another. I am sure they do not read each other's notes.

Every surface, including floors, is cleaned at least once every day, every counter, shelf, cabinet and the bathroom. Some of those things are cleaned twice a day. Now I do have to admit her apartment is spotless, but twice a day?

If you do not read the DSP notes, I encourage you to do it everyonce in awhile. Whether your child lives at home or not it can give you a real glimpse into things going on while your not there.

Pronouns

I bumped into a mother working with her child on pronouns. Her child was relatively young. Making those distinctions between he and she and we is so difficult. This was true for my daughter as well.

I have heard other mother's of children with Autism make the same observation. Pronouns were so hard. The speech therapist helped me work on it on and off for years. I can't say that there was any magical way to teach her. Maybe in hindsight it was a matter of when she was ready.

I can remember at some point that the speech therapists and I did spend a period of time trying to identify the difference between boys and girls. She was aware they had different equipment but with clothes on the identification was much harder for her.

All I can say is that we practiced. We would be in a car somewhere (with the windows up) and it would be a little game. I'd ask is that a boy or a girl? If she got it right I would cheer. If she got it wrong I would say no and the correct answer. It was never pressured though.

It was not too long after that, like 2 or 3 months, that I started noticing that the he/she and him/her combinations got better. 'We' and 'us' just took a long period of reminders to use the correct words. She still does not use the word 'we' often. Do ya'll have problems with pronouns?

Blogging

I know how important it is to write every day or two. It's just really hard to do with a full time job. I'm also still closely involved with both of my daughters and their services. Excuses.

I really need to do a better job of keeping up with you guys though. It keeps me straight and hopefully is helpful in some small way to you. I'm going to pledge to write every other day for a year. Ya'll feel free to comment and email me when I don't. Okay?

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?

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.

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?

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.

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.

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???

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.

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.

Keepers

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.

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. :)

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.

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.

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.

Went to the Hospital

I'm trying to post more often this year. Things just keep getting hairy with my daughters...

Teenagers even when they are young adults are so easily led. This seems to be an even bigger problem when the teen has Aspergers. As close as I can tell the concept of someone using my daughter is just not in her realm of understanding.

The last week has been a turmoil over her wanting to put the electricity in her name where she lives. There are three other adults in the house but they need the electricity in an 18 year old girls name. I seem to be the only one of the two of us that see a problem with that.

Her boyfriend asked her to leave last night. (Now that they have electricity.) She picked up a knife and was running it over her arm and fingers. The boyfriend's mother called me that she was suicidal.

Of course I went. When she wouldn't calm down, I called for an ambulance. The mother told me she wasn't to come back. While in the ER my daughter called them and the said of course she could come back. Once again I am lying to her. Or so she thinks.

I'm hoping the inability to see if someone is using her is due to immaturity and not a permanent feature of Aspergers. Although she processes verbally she won't let me reason with her about what is going on.

If I don't go when someone calls there is also the possibility she could hurt herself by accident. I will continue to go. When she verbalizes she wants to kill herself and has a viable means I will continue to call the ambulance too. I think that is only reasonable.

Rules for Daughters with Aspergers

This may not have been the best first rule but I think it should be. Daughters with ASD miss so much they need to lool around. I also have a few more to add:

Rule #1: Learn the lay of the land.
Rule #2: Everyone has skills.
Rule #3: Everyone has a reponsibility to use those skills.
Rule #4: Building skills requires constant practice.

More to come.

The World According the Mother of Daughter's with ASD

I'm going to make a list of all the things that I know that works for Daughter's with Autism Spectrum Disorders, especially Aspergers. Her is the first one.
Rule #1: Learn the lay of the land.

Aspergers and Stealing Really?

My second daughter has been giving me fits. She is old enough to do what she wasnts as everyone continually reminds me. I keep reminding everyone that she has impaired judgement because of the depression and Asperggers.

She took off to Michigan with the boyfriend, his sister, his mother, his grandmother, and 14 cats and 3 dogs. I knew it and they assured me they had a place to go to, in the winter. It didn't all work out that way.

Anyway before they left they were selling stuff. They had baseball cards for sale. The boyfriend's deceased grandfather's cards. I like baseball cards and wanted to look.

As soon as I looked through them for a few minutes and realized they were mine. Of course she told me they weren't mine. Finally I told her she better find mine or I would call the police. She 'magically' found the cards the next day.

I'm mystified. She didn't used to steal. Did she know they were mine in the beginning? She had to know at some point. For someone who lives in black and white, I don't understand where this came from.

Of course I'm busy reinforcing stealing is wrong. I also lock everthing now.

What do you think?

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My daughter is worried about losing her hours. Our state was going to a system where there are levels of care. Because of the bad economic times, instead of continuing in the phase in the state is doing it all at once.

Even though my daughter has Autisn, I tell people she is smarter than they realize. Not unlike her mother she is always paying attention. She did get a lowere level of care this time but I asked some questions and got it straightened out.

Obviously other people were talking about our system too. My daughter called me and was going on and on. She was concerned about a guy in her apartment building wha lost alot of hours. So many hours that they had to go into a nursing home.

Well although I advocate for people professionally, I don't particularly want to learn about things from my daughter. When mentioning it to the provider agency they could not imagine where she learned about it.

Another night Dominoe called me fussing. This time it was about the DSP telling her she could get in trouble with the police for talking about it. Not that I care, mind you, but I spent a half hour convincing her that it wasn't her that could get into trouble.

Another call to the provider. The explanation this time was that she misunderstood. I know better. She understood clearly. She's no fool.

Autism and Feeding

The last post made me think about how hard it was to get Dominoe to eat as a baby. And how scarey it was. She went six weeks as a new born without gaining any weight.

Finally one of the nurses at the health unit where I lived at the time sat with me to talk intensely about it. Of course I didn't realize what she was doing at the time. She did know, because they were there, I had two older boys so she started to ask questions.

I happened to mention how puzzled I was that she could go so long without eating. That got the nurse's attention. I described how Dominoe could go 6 to 8 hours without waking up and even then was not really interested. I had never had that problem before.

Together we devised a plan that I was going to stick a bottle in her mouth every four hours if she woke up. But I would do it anyway at five hours. Well that helped. She never gained weight like crazy until she was much older but she did start to gain.

Even now when she is sick I might have to hand feed her. She will just sort of stop eating. what brought this up was trying to convince the provider to give her acetominophen. I thought the story might help someone else...

Adult Children in SIL

SIL means Supported Independent Living. When my oldest daughter moved into her own apartment, I waited a couple of months to see how things went. After that I signed with the provider to provide SIL as well as staff. They handle her money, very well I might add.

They are also responsible for food and clothes inventory and purchases. They seem to do well with that too. It didn't take long before they applied for food stamps or SNAP as it's called now here. She qualified because she only gets SSI.

All of that to share that I had to be really persistent to get them to give her some acetominophen for a sore throat. At one point my daughter was telling me she couldn't OD on it. Now she didn't come up with that phrase by herself. And she had only taken two acetomenophin in the past 24 hours.

I finally called the supervisor who said she would make sure Dominoe got acetominophen regularly and she would call the doctor Monday. I don't think they realize how sick she can get.

We have been lucky she has not gotten sick. Now that she lives on her own she doesn't have to deal with younger siblings and their sickness either. I suppose the provider also doesn't know how she wouldn't eat as a baby. She had what they called 'failure to thrive' at one point.

Do you have SIL where you are located? How does it work for you?

You might also like this post.

Scheduling for Adults with Autism

Even though my child is an adult now and in her own apartment scheduling is still an important support for her. You can imagine my surprise when I was talking to my oldest daughter and she started fussing. Of course I wanted to know what was the matter.

The DSP (Direct Support Worker) had just come into her room and told her to get dressed they were going somewhere. It was 9 o'clock at night. I had Dominoe go ask her where they were going.

When that didn't work I told Dominoe to tell the DSP her mother wanted to know. That got a reaction. All of a sudden the DSP told my daughter not to worry about it. She said her husband would go.

If I keep telling people that scheduling is important, do you think they will believe me some day?

Flying Low

One of my New Year's resolutions, well let me rephrase that. I don't I have New Year's Resolutions I have goals. Anyway one of my New Year's goals is to learn to fly low. I'm not having alot of success yet, but I'm trying.

Flying low was brought to my attention by my daughter with Aspergers. Every time I have tried to talk to her about how poor a decision it is to move to Michigan with the boyfriend and his family she goes off the deep end ranting and raging.

When I find a way to work what I, and others by the way, think into the conversation it works better. Another words it helps if I don't say things directly.

She still went but she has spent alot of time thinking through what she would need. I don't think that would have happened without the little nuggets I tried to insert into our conversations.