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...

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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.  :)