Self-regulation and Aspergers

You know I have to tell you when I bump into a term that has helped me through the years.   There have been several of them.  Perservation, de-escalate, and independant living skills are a few.  Well the latest one that I heard concerning autism and my daughters is self-regulation, particularly aspergers.

So here goes, as close as I understand self-regulation is when you play hard and work hard and know when to do each.  So like you know you have to go to bed at a certain hour because you have to be up at a certain hour. 

You may not have to do that on some nights because you do not have to be up then next day.  Therefore you can stay up a little later.  Well people with aspergers seem to have alot of difficulty self regulating. 

At least one of my daughters who has aspergers does to a huge extent.  So we have lots of discussions about things like this.  When I used this term she asked what it was.  Hence my definition of playing and working at the right times. 

The daughter with autism doesn't regulate at all.  Hence her behavior problems.  She doesn't know how to calm herself. 

Hair and Aspergers

I know I've spoken about this somewhere before.  My daughter with Aspergers hates to brush, comb, or otherwise touch her hair.  The daughter with Autism doesn't like it either but she's a little more tolerant.  I know it's a sensory issue.

But it's her hair for goodness sakes.  It gets so tangled there are balls of tangled hair in the back.  It's not like I can make her take care of her hair.  She is 19 years old and everyone in the world reminds me that she can do as she pleases.  Of course she can.  If she understood consequences that would be a different matter.

We do all the things I tell other mothers to try.  We keep her hair short.  I buy enough detangler that I should have stock in one or two of those companies.  I take her to the beauty shop and let them wash it and style it, a little, when she'll let me.  It just gets so knotted sometimes.

Well at one point the people she lives with, the boyfriend and his family, had some problems with child protection.  It was the mother and her boyfriend's baby.  Anyway during the whole mess, pictures of my daughter, the one with Aspergers hair, ended up in the baby's file with CPS.  They have the baby back.

God forgive me, this last time her hair was a mess I reminded her of it.  I know that's not the major reason the baby was taken away.  My daughter just has to learn at some point that what she does has consequences.

She cried.  I cried.  It took about a week to get all the tangles out but they came out.  I feel horrible.  I'm positive the reason she doesn't get some things is because of the Aspergers.  Tell me I'm not the only one having these type of painful to the bone discussions with their child with Aspergers.  Right??

Blogging About Autism and Other Disabilities

Yes, I'm old.   My 18 year old son like to remind me at every possible opportunity.  He was trying to tell me why I can't surf and have 5 tabs open at the same time.  I don't get it.  What's the point of having a computer if I can't use it...

Anyway back to the old thing.  From what I understand, from the 18 year old again of course, people don't use email sign ups to read the blogs they like.  Once again, I don't get it.  There are lots of blogs I'd love to read but if I don't get an email I can't ever find it again.

Well except for the lady that tweets me to remind me to go look.  Thank her by the way.  And the other lady who facebooks in my group so I can go look.  I thank her to.  Could the rest of you with interesting autism and disability blogs get an email sign up?  For me?  :)

Morning Tantrums

DD called me fussing.  The DSP didn't want to take her to buy breakfast.  I could hear the DSP in the backgroud talking to her about all the food they had in the house.  That's when I start using all those little tricks I've learned over the years having two daughters on the Autism Spectrum.

I asked her if she had taken her medicine.  I had to ask several times. At the same time DD is still fussing about going out to get breakfast she tells me yes she took her medicine.  So I figured it might be that the medicine hasn't had time to work yet. 

It takes about 30 minutes for the ADHD medicine to slow her down so she can think.  Yes I know that it doesn't exactly slow her down.  The stimulant actually stimulates the higher level skills so she can thing. 

Next I start asking her if she has put on clothes yet.  At the same time I can still hear her fussing at the DSP. I can also hear the DSP talking to her. 

At some point I hear the DSP tell her if they eat breakfast at home maybe they can go to Popeyes for lunch.  She loves Popeyes.  DD hangs up on me.  Finally I know the medicine is working and we are getting past this little tantrum with out any aggression.

A few minutes later I called the DSP and DD was eating eggs and grits.  I could hear her happy in the background.  Sometimes those behaviors can be controlled with a little stalling and redirection.  How have your days been? 

Early Morning

I was up before 5:00AM this morning.  I had checked my phone an figured out my oldest daughter had called me.  I called her cell phone and didn't get an answer.  That was not a problem since she was supposed to be asleep and not on her phone.  Part of the Autism is an obsession with the phone so it's supposed to be off at night.  That's why it was strange that she had called me. 

Then I called the house phone.  No answer.  That was a problem.  DD#1 has staff 24/7.  Even if the staff was napping, they should have answered the phone.  You have to remain at least partially alert with a person with Augism.  I called on and off for about an hour.  Then I got dressed and went over there.  DD was in her bed asleep. 

The staff person and I talked a couple minutes before we realized that the house phone was gone.  We were both surprised but since things seemed to be ok I figured I would deal with it later when the provider agency opened.  And I did. 

What surprised me is when I talked to my youngest (18 years) and oldest (32 years) boys about it they didn't see why I went to her house.  I wanted to know exactly what DD was doing and why no one was answering either phone.  I still don't seem to have gotten it across to them that even with extensive supports for someone like DD you have to watch her.

I really enjoy the provider agency.  We work well together.  I tend to be very blunt and businesslike about what DD needs though.  I know they have their hearts in the right place but it's my job to make sure DD gets what she needs.  It's not personnal. 

I get on well with the DSP supervisor and the Director of the office.  There are just alot of DSPs in and out of DD's apartment.  When you figure 3 shifts times 7 days, you are figuring on at least 4 to 6 people.  I like to know what is going on.  Even in the middle of the night.  That's part of the reason DD has a cell phone. 

The younges son and I also had to have a discussion about what a DSP was.  (Direct Support Personnel)  He wanted to know when it had changed from PCA and why.  Of course he is the youngest even at 18 years.  I had to explain that the terminology changes every once in a while.  The different offices even move in a state agency and between state agencies. 

I was just surprised.  DD is 24 years old and they still don't understand the complications of Autism.  Well and supports too for that matter.  Since they will be an increasing part of her circle of support I need to get better at involving them.

Relationships and Autism

My oldest daughter has Autism and a new boyfriend.  We were at Bible Study and someone kept calling her.  I wanted to know who it was and she wouldn't tell me.  She bold face lied to me about it.  She's 24 years old so she can do that.  The only problem is she had a guy harassing her a while back.

I wanted to make sure it wasn't him.  Well I worked on it.  It was ok.  He is another self-advocate.  I don't think he has autism but that doesn't really matter.  But I'm hugely amused that she is lying about it.  The shame is I think I know why she is lying.  I suppose it's partly my fault too.

She had a boyfriend a while back.  He wasn't and isn't a very nice guy.  Well he thinks he's all that.  Unfortunately the supervisor at the provider company isn't thrilled with him.  They think DD acts up when he's around.  I agreed, she does.  Anyway I suspect the provider talked to his provider.  They have been keeping them apart. 

Obviously DD figured out that she needed to keep having a boyfriend quiet.  I'm not telling anyone but you!  Shhhhh

Being a Girl with Aspergers

Fair warning we are going to talk about Aspergers and female issues.  Sooo if you don't want to hear about it stop now...

.

.
...

Ok so if you are still here,  I suppose I have mentioned this before, if not here somewhere, it's interesting to have a daughter with Aspergers.  She is so doggone literal.  To the bone literal if you know what I mean.

We were texting.  Now if you have a child with Aspergers and she or he can text I highly recommend it.  I have experienced and heard other parents mention that their child seems to have more stuff to say when they text.  I even have a friend with a husband that she suspects has Aspergers that has mentioned this.  Anyway if they can type or spell, even a little teach them to text and email.

My daughter and I were texting and she says she started her period.  I'm like yeah, that happens every month.   She says no it doesn't for her.  I'm like well I have that going on but it's because I'm older and starting to go through the change.  (You have to share these things with daughters, especially daughters with Aspergers, so they will know.)

Then I ask her if she knows why her period doesn't start every month.  If she did she could plan on it.  DD says her period moves around in the month and sometimes comes twice a month.  Bingo!  There we are with my little (grown) daughter being literal.  I explain that even though everyone says a period comes once a month what they really mean is once every 28 days.

I also explain that every 28 days means the period will start on different days of the month.  It also means that once or twice a year she will have 2 periods in a month.  The funny thing is I also know I have had this discussion with her before.  She forgets.  There is just too much in life going on and months and years are a long time for her. 

So that's my insight for the day.  I hope it helps you if you have daughters with Aspergers.  :)

Complications of Aspergers

So I sort of alluded to the fact that I'm having problems with the second daughter, the one that has Aspergers.  I hate talking about her but as I believe I said this is my life too.  I'm at a loss as to what to do to help her other than go meet her and lead her through the things I want her to do.  Maybe this is part of parenting a child with ASD and I don't know it. 

She is having problems with budgeting.  I know alot of young men and women do have problems.  I also know it can be done - even on her small social security check (SSI).  I know this becaus it is done and done well with my oldest daughter's check by the provider agency.  My oldest daughter has what she needs and quite a few of the things she wants. 

The second daughter as close as I can figure out has a couple of problems.  I'm not sure if it has to do with the Aspergers or not.   The first thing is that she has difficulty planning for the entire month with one check.  She has difficulty anticipating her needs for a month. 

The second thing is she is busy taking care of other people, including her boyfriend, and gives/loans her money.  She loans money to the boyfriend's family and then doesn't get paid back.  Therefore her bills don't always get paid. 

Once again the only thing I can figure out to make it work is to take the day off from my job and go meet her to help her get things paid.  Of course that means I miss work.  And then there is the figuring out how to do this without making her so angry she doesn't cooperate.  I wonder if things are supposed to be this way?  Anyway that is my plan to go to her and make sure the important things get paid.  Then make sure she has food.  

Did I mention that it came out sometime during the past month that she had been going through the trash for food and picking up shorties for the boyfriend?  It just sort of popped out of her mouth at different times in the past month.  Do you see why I'm so conflicted? 

At the same time that I can see that she needs to be able to make her own choices and her own mistakes....  Is this one of the things meant by Independent Living Skills?   What do you think?  No one ever answers these questions but I keep asking? 

Still Working on Employment

It's been awhile since I posted.  I suppose after someone seemed to be offended that I talk about my daughters and Autism and Aspergers, I have not been posting.  At other times I feel like this is my life too and I should be able to write about it.  I just don't know. 

My oldest daughter is working on employment.  She has gone to a statewide committee meeting and training on employment.  I am still working with the Employment First group at our Office for Citizens with Developmental Disabilities. 

DD recently changed supported employment providers.  I discussed it with the LRS (Lousisiana Rehabilitation Services) office.  The last provider had been working with her for a year and never had brought her to a job interview.  Even after I told them about an employer that was looking for people with disabilities to hire.

I don't know what happened there.  I'm not sure if the provider used the contact with other clients or not.  They should have at least used a contact I provided with my child.  Or that's what I think any way.  I understand the process of using your parent's contacts for any child to find and get a job.  That process becomes even more critical with an adult child with Autism. 

The new provider has only been working with DD a couple of weeks and already has called her to go on an interview.  We are both very pleased. 

The younger daughter with Aspergers is another story.  She is definitely living the way she wants to live.  I need to think about it some more before I write about her. 

Denial and Young Children with Autism

So as I mentioned in my last blog post I was in a meeting with someone I respected that was more than an acquaintance and less than a friend. We were talking about mobilizing parents in our states early intervention system which is called EarlySteps. This includes children with Autism and with other disabilities.
I will take the blame for part of this because I don’t remember exactly how I said what I was trying to get across at the beginning. Whatever I said I gave this person the impression that I was talking about parents of children with Autism being in ‘denial’. Specifically children in the zero to 3 age group. I hate that tern. The only term I hate more than denial is ‘non-compliant’.

I got a little upset because I don’t believe I or many of the young parents I meet know that their child has a Autism and choose to ignore it. I realized my child had a disability but did not understand how serious it was for many years.

I believe that many of the young parents I meet are in the same situation. They may or may not realize their child has a disability. Not because they choose to ignore what is going on but because they may not realize their child is not in the range they should be in.

Other parents know there is a problem but do not realize how large of a difference there is between what their child should know and be able to do and can perform. It’s not a choice it’s a lack of knowledge and maybe even a lack of being able to prioritize the significance of what is going on in their lives.

Well later after the meeting my friendly acquaintance and I had a chance to talk. He doesn’t see denial as an action on a parent’s part to ignore what is happening. He sees denial as a situation when everyone else can see the difference and the parent cannot.

That was definitely a paradigm shift for me. The majority of the time when I hear professionals say denial it is said with what seems to be sarcasm. But…taking ownership for my role in the world maybe not all professionals mean a parent is deliberately ignoring the problem.

I’m also thinking of how many people I have been annoyed with when speaking of denial. Wow…. How about you?

Which way do you think of the term ‘denial’? Does that word upset you too?

Friends, Acquaintances, or What?

I had a conversation with a person I respect that I will get into on a later post. Right now I'm trying to figure something out. What do you call those people that are quite a bit more than an acquaintance but not really a friend? People you may meet through work or who are providers of services to your child with autism or who are providers in other areas of your life. There should be a name for that person, not yet friend but more than an acquaintance. To just call them a friendly acquaintance seems demeaning. My social worker friend tells me that's why you should have clear cut roles that should not cross. If it were only that easy... What do you think? Please comment as I'm really curious.

Autism and College

I only know of four people with Autism Spectrum Disorders that went to college. Of those 4, only 3 have diplomas. One of them was still in the process at a community college. One worked as a mental health case worker. Another one wrote articles for a living. The third was a professor at a college. I guess the point to all of this is that it is possible for people with Autism to get degrees and have professional jobs. Of course not everyone is cut out for college. Similar to all the people in the world, some are cut out for college and some are not. Of course these three people have gotten sometimes extensive support to handle the social pressures associated with getting their degrees. Of course, of course, of course…but it is possible.

Autism Sensitivities

I’m fascinated at the theory that people with autism may have been such a mainstay of civilization years ago. During a time when people had to always be on the lookout for predators or the enemy people with autism would have essentially been the look outs. Going along with this theory, people on the autism spectrum would have been sensitive enough to their surroundings and other people that they would have seen and felt things the rest of the world missed. This was a valuable skill. Now there are so many inputs into a person that it becomes never ending noise to a person with autism. Constant input is even painful. It wouldn’t matter if the input is audible, visual, something that could be felt, or a combination of any of these. It could cause pain. This so accurately describes my daughters. One of my daughters will start to cry or get angry for no reason. Typically we will be in a group of people where someone will start crying or get angry at the exact same time she does. It’s almost eerie and has happened more times than I can count. Taking this a step further, we are cluttering up the world with so many sights and sounds. This clutter is to the detriment of people who are so sensitive. To carry that a little further those people then act out with what we consider inappropriate behavior. That, at least for me, is a shocking thought.