Wednesday, December 26, 2012

A Little Bit More About Autism and Santa Claus

To continue this subject a little bit.  I woke up with a worry about what will happen to Dominoe and her Christmas after I'm gone.  I'm not going anywhere you understand.  I plan to live to be a 120 years old.  :)

Anyway, I was worried.  I called my oldest son to tell him that she still believes Santa Claus comes on Christmas morning.  Someone one, mainly him because he was the oldest, would have to make sure that happened.  He said ok. :-/

He's a man of little words.  LOL   I hope you are having a wonderful holiday. 

Sunday, December 23, 2012

Autism and Santa Claus

I woke up in a panic a couple mornings ago.  I couldn't remember if the daughter, Rose, with aspergers believed in Santa Claus or not.  I finally called and asked.  The older daughter, Dominoe, who has autism still believes Santa Claus passes and there are presents on Christmas morning.

I can remember when my youngest, Mikey, who was only ten years old finally came to me and said there wasn't any Santa Claus.  He had been saying it for the past two years.  I had been putting him off by saying if he didn't believe in Santa Claus he might not get any presents Christmas morning.

Well at ten years old he finally said he didn't care.  Sooo I had to fess up.  Well as anyone knows who has more than two children information in a family works it's way around.  (I have five children.)

The daughter with aspergers (Rose) didn't believe him.  She really didn't believe him for another couple of years.  I guess that would have made her about 14 years at that time.  The son wasn't finished with telling though.

He had told his Dominoe that there was no Santa Claus.  I remember the look on her face.  She said, "There's no Santa Claus?"  I told her there was and gave both Rose and my last son, Mike, my best momma says to 'shut up' look.

Later I talked with Rose and Mike in private that Dominoe might always believe in Santa Claus.  They tried to understand at the time.  They certainly understand now.  To get back to the start of this post Rose, the daughter with aspergers, doesn't believe in Santa Claus.

I know this is going long but Rose doesn't get a whole lot of autism type services.  She doesn't seem to be 'disabled' enough.  Most of the services she gets is through mental health rehabilitation services.  Dominoe on the other had gets supports 24/7.  I know a lot of it is because of the behaviors.

I wonder though if people who believe in Santa Claus at 24 years old don't need more autism services.  I just wonder...

I hope and pray you have a Peaceful Christmas and New Year!

Sunday, December 16, 2012

Autism and Siblings

It was time for another one of those discussions.  The one that I periodically have with one or the other of my two oldest boys about their sisters and autism spectrum disorders.  The oldest son is 32 years old. 

I'm always mystified because one or the other son will tell me 'Why are you telling me this?'  It's not like we haven't had these discussions for year.  I then go into the whole speech that it is because as I get sicker they will have to do more.  Of course they need to know things that I know. 

I guess what brought it to mind again is one of the adult siblings I know.  They just found out that their brother has a medical condition that can be helped by a specific diet.  The sibling reminded me of my son.  The sibling is doing some of the medical stuff right now. 

Anyway mom remembered the diet.  I didn't say anything to the sibling but I sat there thinking about how guilty the mom is going to feel shortly.  She knew and probably forgot over the years.
So I keep telling my two oldest about things, over and over. 

Friday, December 14, 2012

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. 

Tuesday, November 27, 2012

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??

Sunday, November 25, 2012

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?  :)

Wednesday, November 14, 2012

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? 

Monday, November 12, 2012

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.

Sunday, November 4, 2012

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

Friday, November 2, 2012

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.  :)

Wednesday, October 31, 2012

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? 

Friday, October 26, 2012

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. 

Monday, July 16, 2012

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?

Thursday, July 12, 2012

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.

Thursday, June 21, 2012

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.

Tuesday, June 19, 2012

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.

Wednesday, June 13, 2012

Dear Daughter and a Nap

As promised here is one of the stories since DD (Dear Daughter)stopped the medication for headbanging. As you know this is one of the possible serious problems you may have to deal with when you have a child with autism. Not all children with autism headbang or have self injurious behavior. As I'm sure I have said way too many times my oldest daughter is my child with full blown autism. Anyway the medication DD was taking was in short supply so the doctor and I decided to try going without it. There were other medications we could try but it had been many years since we had started this one...11 years. The first thing the provider and I noticed was that she was alot more verbal about what she wanted. Now at my house and now at her own house being a verbal independent person was considered a good thing. I do understand that other peopel value being calm and controled but we were passionate and out spoken. I consider both sides to be equally useful values. Not everyone else has that viewpoint. Although the provider certainly was not complaining, they did share with me that at one point she fussed because they had not warned her that a new staff was coming to her house to train. I agreed with DD. The should be routinely checking with her when there is going to be changes. Then it was my turn. DD called me one Sunday while I was working. We were just chit chatting and I said something to the effect of 'I wish I could take a nap.' DD procedes to remind me that she cannot take a nap because the provider and I have said it wasn't a good idea. In my defence what was happening was the DSP (direct service personnel) were letting her sleep all day and she was up all night. She was up and upset during the night. So no nap. Or at least not one without talking to me or the supervisor. I explained this to DD and changed the subject. This is a technique that had worked and worked easily. DD just forgets about what she is fussing about. At least she forgets most of the time. Which is fine. Somehow we got on the subject of her sister. I told her to call her sister and talk. Maybe a half hour later DD calls me back and says her sister didn't answer. Without thinking I said 'She's probably taking a nap.' DD responded 'A NAP. Why she get to take a nap and I don't.' And on and on. Finally I'm laughing and trying to interrupt to find out who the staff is on duty today. DD tells me and lets me talk to the staff. I ask them to 'Please let her take a nap.' Then I talk to DD and tell her to go ahead. She said, 'Fine!' Considering how difficult it is to facilitate communication when someone has autism I'm thrilled. This is just one of several instances in the past few weeks that she has been easily able to tell me or someone else what is the matter. What's more she's been able to hang onto the subject and follow it through. I really wonder if this is due to the medication being removed. It was and still is more important to me that she is not hurting herself. But given that that behavior seems to be gone...I'm terribly pleased at the difference in the way she thinks. Although I talk about autism behaviors and what to do about them I want her to know what she wants and to make efforts to get it. Autism or not she deserves that.

Monday, June 11, 2012

Autism Medication

One of the medications we depend on for my daughter is in short supply. I'm not exactly sure why. The pharmacist and the doctor say it's a problem somewhere in production. Unfortunately, similar to other members of a sub-group of chidren with autism, this is the medication we have used for years to help control the head banging and self injurious behaviors. After a long discussion and much trepidation we have decided to go without it. I have been very worried. It's been a month or maybe six weeks and I am very pleased with the results. Let me explain. We have not had but one or two incidents of any banging. Even during those two incidents all she did was bang her hands on the wall. We have also seen some positive changes to her thinking that I will talk about in my next post. I must say I was really scared. She would bite herself and bang her head on the floor as hard as she could. Granted this had been years ago. She's 23 now and the last period was when she was about 12. So she had been on the medication for 11 years. I suppose I needed to talk about this because it's so important to regularly thinks about what medication our children are taking, why they take them, and how long. I can't say I would have thought of it myself or even been willing to have her take a holiday from this particular medication. I do believe in as little medication as possible though. The positive changes are definitely icing on the cake. Do you have a similar experience with medication? Please see my next post and one of the stories of positive changes.

Sunday, May 13, 2012

How To Know if Autism Services Are Working

I suppose there are many ways to know if Autism Services are working correctly for a child or adult with Autism. One of my favorite ways presented itself the other day. As some of you may know my oldest daughter lives in her own apartment. She has supports 24/7 because of some of the typical Autism Behaviors and some more difficult behavioral issues. Most of the time things are ok. Unfortunately when she gets mad she gets mad quick and sometimes it's bad. DD called me excited because she had seen her oldest brother's half brother. Apparently she was at the show with her staff and having trouble getting down the stairs. The half brother helped her get down. She knew who he was and called to tell me. In turn a couple days later I told DS that DD had seen his half brother and he was helping her. DS tell me his half brother called him and told him about it too. The staff person was right there but DD was annoyed at the stairs. From this little incident I was able to surmise several things. For one thing my daughter and her staff were where they were supposed to be. Second they were together and acting like they were supposed to. Third the staff know they might bump into people that know her and me almost anywhere. Although on some level I wonder why the staff wasn't helping her down the stairs... I suppose I should be glad she figured out how to get help on her own though. She's using thous Social Skills that we have been working on for what seems like forever. Services for adults and children with disabilities do work. It is similar to the ways you might try to decode if the services in school is working. It's not always about the papers and what they say. Many times the relationships tell me more than anything. What do you think? How do you know if it's working?

Thursday, February 23, 2012

Cell Phone Annoyance

DD won't leave the cell phone alone. Well, ok, she won't leave the house phone alone either. Finally we have gotten to the point that both phones were out.

DD 'fixed' the house phone so well that the company had to be called to come and fix the hardward in the wall. She says she was taking the black piece out because it was in the way. Go figure.

Anyway the provider that handles her money was supposed to pay for her cell phone. We have been working on this for 2 and a half to 3 weeks. Still I learned when my daughter came home for the holiday this weekend that she didn't have a phone.

I think, with my little know-nothing self, that not having a phone is a health and safety issue. I even had to remind the provider to do an incident report. But that's another story.

I met DD and her DSP (direct support person) at the cell phone company. The DSP said that the cell phone company could not find her account. At I was in line I called the administrator at the provider and told her that I would pay for the phone and they could pay me back.

She started to explain to me why that would not be a good idea. I must admit I was past the point of listening to another explanation. I hung up. I called back later but I hung up.

I will certainly advocate to get my money back if for no other reason than DD stayed without a phone for 2 weeks. If I don't get it back oh well.

All of this to say, DD called me on her cell phone today to tell me she is going to the parade with the boyfriend. :D I am quite happy that she called me.

Tuesday, February 21, 2012


My DD is back to seeing the guy she was seeing before. And the same one she was seeing befor that. I think they have broken up and gotten back together 4 or 5 times now.

It's not that she hasn't had the opportunity to date other guys. She just doesn't care for them. Typically they stop seeing each other because of another girl.

I'm annoyed but she is so happy when she is seeing him. DD came for the weekend before Mardi Gras and had to go back Sunday. Sunday she was singing. We also went to work out some issues with her cell phone yesterday and she was singing.

DD did tell me she wanted to 'lay' with him. She agreed it was time to call the doctor. We had the discussion about having a baby that might cry. I just wanted to make sure she and I were on the same page.

The discussions are really simple but I want to know if her ideas on a baby have changed. She loves kids but gets really upset when they cry. DD cries too. Sometimes being the mother of an adult with Autism is complicated.

At the same time I want her to have a life with all of the richness it can have, I want her to have a life that works. I'm determined to give her the choice BUT I do remind her that babies cry. I'm just doing the best I can.

Thursday, February 16, 2012

Being an Autism Momma

What were you going to be? I mean before you became an Autism momma or Autism daddy? I had gotten my notary liscense and had signed up to take a course for my real estate liscense.

When I look back I don't think I knew that she had Autism yet. I just knew that wasn't where my life was going. I mean who else but us? They can't do it at least not as children.

Now I have a little breathing space. Both the daughter with Autism and the daughter with Aspergers are grown. I don't have to be 'on' all the time. My work and my life has revolved around Autism.

I don't regret it. As a matter of fact I think I'll keep doing THIS.

Tuesday, February 14, 2012

Managed Care Approach and Autism Services

I live in Louisiana. The Govenor's Executive Budget presentation to the Joint Legislative Committee on the Budget says long tern personal care services in the NOW Waiver will be handled with a managed care approach.

I wonder what that means. Do any of ya'll have experience with that expression in your state? How did it go?

Sunday, February 12, 2012


I haven't written in awhile. Sometimes I get so overwhelmed with my own health and making things work for my daughters that I forget. It's not fair to my readers though. I mean after all how can we learn from each other.

It was like that in the school system too. You work so hard at figuring out which different programs and techniques that might work it gets too big. I hear homeschooling families go through the same struggle.

Now I'm working on things like employment for one of the daughters. Some problems though... Anyway I'm working at it.