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.
Monday, April 18, 2011
Saturday, April 16, 2011
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.
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.
Thursday, April 14, 2011
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.
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.
Tuesday, April 12, 2011
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.
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.
Sunday, April 10, 2011
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!
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!
Friday, April 8, 2011
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.
Friday, April 1, 2011
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?
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?
Wednesday, March 30, 2011
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.
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.
Monday, March 28, 2011
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.
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.
Saturday, March 26, 2011
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!
Thursday, March 24, 2011
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.
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.
Tuesday, March 22, 2011
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?
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?
Sunday, March 20, 2011
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?
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?
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