Thursday, May 28, 2015

The Next Generation

One of my daughter's, the one with Aspergers, has two sons.  The oldest one seems to have some problems.  He does not really make a lot of sounds.  I have been working with her and going to doctor appointments with her for a couple months.

She really does a good job meeting her boys needs and making sure they go to the doctor when they need to and when they are supposed to go.  She just did not really seem to be getting any where with the primary doctor after I sent her with questions several times.  Maybe she was not communicating the concerns clearly.  That would be typical of Aspergers.  

So I went.  We got a referral to an orthopedist for his foot and his leg.  There are twists where there should not be.  We also got a referral to and audiologist for a hearing test.  That is the first thing to check for speech problems.  I am hoping and praying there is not any thing major going on.  I am glad the doctor so readily was willing to give us what we wanted.  

Well I am also not sure why it was not working before.  Maybe because her son is still young?  He was only 17 months when we started this.  Then again it may be because I am not as willing to take 'no' or 'let's wait' for an answer.

Friday, May 22, 2015

Initial Steps for Parents of Children with Autism Having Problems in Special Education Services

I work with parents of children with disabilities on a regular basis. Many of those parents are parents of children with autism. At the point parents find me they are usually in some type of crisis with the school system.

After doing this for many years I have noticed some patterns that I hope to capture and write about. Sometimes the child with autism has been suspended or expelled. Hopefully the parent has reached out before an actual expulsion.

I know the parents I work with would like me to talk to them or make some calls and do something about their child’s situation. Fortunately I have learned that for long term results for the parents I should not and do not do that. If I do the school system personnel start interacting with me.

If I get the parents to call and ask for documents or ask questions, they may have to call me back several times BUT the school system personnel interact with them. That works better for their child and for them. It is part of the parent being and learning to be the expert about their child.

From the beginning I tell the parent we need to meet, just me and them. Then I give them a list of several documents I would like to see. If they do not already have those documents then they can go to or call the school and ask for them.

First to get a snapshot of what has or should have been going on this year I need the current IEP. Second I also need to see the last 3 year evaluation from the school system. Where I live there is a smaller evaluation if we are just agreeing that the child continues to need special education services. I want to see the evaluation where more in depth testing was done. Third I would like to see behavior plans, office referrals, Response to Intervention (RTI) reports, suspension reports, or anything else. 

All of those things are important before I am able to do something for a child with autism or any other disability. Ideally those are things the parent has readily on hand. Even if it is not the parent has some verbage to use with the school system to let them know they are learning how special education services work.
Dominoe, my daughter 16 years

Wednesday, May 13, 2015

Home for Mother's Day

Dominoe came home for the day for Mother's Day. She just wanted to come for the day which was fine. I have noticed that when she comes to my house it is for less and less time. That may be due to her sister's babies. With a 19 month old and a 6 month old things are busy and loud. My daughter does not like loud. It is a sensory thing.

Another thought has occurred to me though. Maybe she is just getting older and does not want to be at my house as much. At her apartment she is queen of her castle. My older children are like that. They like their own house. She has staff with her waiver services 24/7 so that helps. I am not sure what we will do if or when that level of support is gone. I have a Plan B but it would be hard on her. I suppose we shall see.

Thursday, October 23, 2014

A Baby Boy

Well exactly one week and one day after we found out my daughter was pregnant she delivered a baby boy.  He's healthy and wonderful of course.

She and I on the other hand are not getting along well.  I was able to keep my mouth shut while she was pregnant.  My patience is gone now though. I did fuss long enough and loud enough that she has the shot before she left the hospital.

We won't have any time where she calls herself on the pill.  I understand and agree she has the right to have children if she wants.  I also know she doesn't understand the consequences of things.  There has to be some way to balance the two.

I'm still concerned that she didn't know she was pregnant.  I'm still wondering if it is the Aspergers. How can you not know?  She is still a wonderful mother but two babies under two is rough.

Tuesday, October 21, 2014

She Went To the Doctor for a Cough and Came Out 36 Weeks Pregnant

As you may remember I have two daughters with Autism Spectrum Disorders.  One of them has Autism and the other has Aspergers.  Lots of things have been going on with both daughters.  I just forget to write about them.

Well Rose, the daughter with Aspergers, has had this funky cough.  At times it got bad, so I told her to make an appointment with the doctor.  She went to the doctor on Thursday afternoon.  By the time she was done she was 36 weeks pregnant.

Because she and I argue so much I have been letting her go to the doctor by herself since she was 18 years old.  Particularly since EVERYONE tells me she is an adult and can not be forced to do things like take her medication or use a reasonable form of birth control or cooperate with her case worker.

Then when she had her first son I still let her go to doctor appointments for her and her baby by herself.  I've learned that I talk so much that she doesn't talk when I'm there.  She's a very good mother.  She watches her son like a hawk.  I would only go with her to the doctor if there was a problem.

All of that to explain why I wasn't with her.  The other thing about Rose is she loves her cell phone.  She calls me or texts me most of the time she is in the doctor's office.  She called me that Thursday.
She said the doctor listened to her chest and felt her stomach.

He told her her stomach was 'distended'.  She asked him 'What does that mean?'  He told her her uterus was inflamed.  She asked him 'What does that mean?'  He told her she might be pregnant.  She kept telling him no.  Finally he got an old sonogram machine and gellied up her stomach and let her see and hear the heart beat.  He tried to get her to look at the head but she wouldn't look.

I'm so upset.  I knew she had gained weight but so had her boyfriend.  They moved in about 5 months ago.  We always have food.  They don't have to walk a mile to and from the store.  I figured that was why.  I had been giving her the deprovera shot since March.  It didn't even occur to me she was pregnant.  She had taken a pregnancy test before she started the shot.  She was probably pregnant since January...

And did I mention she has a son.  She's been pregnant before.  How can you not know you are pregnant?  I wonder if it's the Aspergers.  Maybe she is so unaware of her body?  I know problems with realizing where your body is in relation to your environment is one of the problems with ASD.  I really can't come up with another explanation?  What do you think?

A baby is a good thing.  A baby is a good thing.  A baby is a good thing.

Tuesday, September 9, 2014

Yes People with Disabilities Can be Unsavory Characters

My daughter has a new boyfriend.  I learn about him on a Wednesday.  He showed up at her door, which was fine.  I won't use his name for reasons which will become apparent shortly.  The DSPs (Direct Support Personnel) are supposed to call me, which they did.  They reported from the beginning that he had a disability.

I like to know when something different goes on because most of Dominoe's schedule and life is pretty structured.  If you have a child with autism you know how important that structure is even if they are an adult.

I'm not sure if they saw each other the Thursday.  I just don't remember.  I know the Friday they did.  There is going to be an election in a few months.  One of the people running for something or the other threw a dance in the recreation room at the apartments where DD lives.

The next day, Saturday, we met at a restaurant for DD's birthday.  She was 26 the next day.  The new boyfriend wanted to attend so I said yes.  He gave DD an iphone and activated it for her birthday.  I'm aware he has a disability and asked lots of questions.

He was aware that the phone was expensive.  He was sure he had the money.  Even though he has a disability he does not have a service coordinator or a provider agency.  He worked at the same place as DD but I'm not sure if it was competitive employment or not.

At some point the next evening he ended up with all of DD's gift cards.  When I fussed and asked her about it, she told me they were hers.  And...she's right so I didn't say a whole lot more.

The next evening she gave him her birthday money.  Now I really fussed.  She told me it was 'theirs'.  Then I really fussed.  There is no theirs with a guy you have been seeing five days.  We continue to discuss this issue and when money 'might' be shared between a couple.

I continued fussing and one of the DSPs who has been with DD a long time.  She had a long discussion with this young man about DD not understanding.  The next day he brought back the cash but to this date we have never seen the gift cards.

I know this young man knows more than DD does because he drives and he can carry on a general conversation by text.  Yes, DD texts but it's 'lovey lovey lovey' or 'mothery mothery mothery' or something  similar.

At some point he stopped talking to DD.  He also asked one of her DSPs to be his girlfriend.  He told the DSP her would buy her a cell phone!!!  He has been seeing DD less than two weeks.

I'm in the process of trying to get DD to understand that he isn't a good guy.

I'm also amused when I think of the people who say people with disabilities are little angels - NOT. lolol  Do you have a similar story?

Friday, September 5, 2014

Not a Good Year For Autism in Our Lives

I have to admit sometimes I'm full of my self. Things have been going so well for quite a while with my oldest daughter's services. Even the behaviors associated with her autism have been going fairly well. Then we had several problems right in a row and things have gone south. FAST. Somehow Dominoe burned herself with a hot bowl of soup. I haven't ever gotten a straight story from Dominoe if she carried the soup to her chair or if the DSP handed it to her that hot. As you may know with people with autism, getting a full accurate story is challenging. She's better now. But we spent a couple months going to the wound care doctor and having the wound debried. I now know more about would care, bandages, tapes, and burns than I ever wanted to know. I have had intense discussions around health and safety. I have had even more intense discussions about following the doctor's orders with nurses and the provider company. Then the supervisor of the DSP's was let go from the company. Dominoe was very attached to her. The new supervisor is totally different and definitely not hands on. Things gradually got to the point that we started looking for another provider company. There started being issues in the process of linking with the new company. I thought they were misunderstandings. Unfortunately when I spoke to someone in the local state office within 2 hours the new provider decided the couldn't meet Dominoe's needs. I guess it's better I found out now. I know people in the state office across the state. I don't want a provider company who thinks they might be able to stop me from speaking to anyone about how things work. On the other hand I feel like I have done something wrong... Things were going so well for Dominoe. But then maybe I'm too full of myself. It's really about Dominoe being healthy, safe, and happy.
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