Applying For Services

Applying For Services

Applying for services for a child with autism is no fun. I mean who wants to ask for help and tell someone all their problems to justify they need a little help. What makes it worse is the attitude of workers who are generally nice and pleasant.

The things people will tell you... I attended a meeting with a very nice worker who obviously wanted to help the mother. While talking about waiver services the worker said a person could help with baths, light cleaning, light cooking, and such. Then the worker said 'but only if you can't do those things, you still have to be the parent'.

This was a very good mother that did without to take care of her children. It is hard enough to ask for the help your child needs or may need without your parenting being questioned. Then of course many times by the time a parent of a child with autism gets help they are exhausted from years of 'close supervision' and no sleep.

Attitudes like that appear to be ingrained into people that without even realizing it believe your child is they way they are because of the parent. Of course if or when the parent reacts then it must really be because of them. It is a perpetual Catch 22. In reality parents should be seen as part of the solution not part of the problem.

Till next time,
Mylinda

Grandma Advocate

Grandma Advocate

One of the things I do for a living is work as a disabilty advocate. A lot of time it is in the educational system but not all the time. I help parents identify choices. I also help them identify the pros and cons of those choices.

Then I tell them the steps that will bring them closer to the options they choose. I have been doing this for my children for over 31 years and professionally for 25 years.  That is if you don't count the year and a half I volunteered. 

At this point it is in my blood. I recently went to an IEP meeting for one of my grandsons who has autism. I was vastly amused when the vice principal asked me if I was there as an advocate or as a grandma. I told her yes both. She rolled her eyes and looked at another vice principal at the meeting.  

I wondered several things. Do principals stop being teachers when they become principals? Do teachers stop being teachers when they leave the school? Although I understand separation of roles I am not sure how you stop using the information in your head.  

Anyway, my amusement for the week,

Mylinda

Autism Doesn't Go Away

Autism Doesn't Go Away

It really doesn't.  People with Autism Spectrum Disorders may learn to cope better as an adult.  Maybe.  Or differently.  No not really.  I even hear adults with autism agree.  Autism doesn't go away. Then there is the fact that there is less supports to further complicate things.  

Many children and adults with autism, or at least the ones I know, seem to be emotionally and socially delayed.  It may be a lot delayed or it may be a little delayed.  I feel like saying it is the relationship silly...  From a parent, my own, point of view it is like dealing with a teenager all the time.  I am sure I have said this before.  

The effects of autism are like a perpetual cycle of rebellion.  Even when your child, now adult, is a competent major it is complicated. Even though they have a disability when they are a competent major they have the right to do what they please.  They should have that right just like everyone else.

What is harder is the teenage-ish tendency to just not agree for no other reason than you are their parent.  Even when they repeatedly come to you for help they don't want to use your suggestions.  My typical children did finally get to the point they took my help and my advice or they figured something else out.  

Maybe as my daughters get well into their 30's they will mature to the point they get it.  Maybe I will have to figure out a different strategy.  What do you do?  Do you have any strategies that might help?  Share in the comments.  

Is It Autism Or Something Else?

Is It Autism or Something Else?

(She loves to take selfies 

and send them to me.)

Autism doesn't go away or just get better. Maybe it is different but Autism is still there. That said I am still amused at some of the things the girls, now adults, tell me.

DD#1 has state funded services. One of those services is Direct Support Personnel (DSP). These workers help her in her own appartment. They are supposed to HELP her do all the things you need to do to maintain your household. (They are also trained to help with Autism behavior issues too.)

So recently DD#2 called me:

DD#2: What are you doing?

M: Taking a nap. Who is your person today? (Standard question between us.)

DD#1: Ms. T, she is hanging up my clothes for me.

M: DD#1 you know how to hang up clothes. Why aren't you helping her?

DD#1: Because she is doing it for me.

M: DD#2 that's not how this works you are supposed to be helping her.

DD#2: Mom go back to sleep. Finish your nap.



😯😶
Granted people with Autism are extremely honest but really? Then again maybe this is just a young adult asserting their independence. That is good. But then again maybe the DSP is just spoiling her....  What do you think?

He Licked It

He Licked It

One of my daughter's has Aspergers.  She has two son's with Autism.  They all live with me which is good.  The youngest of the boys is 4 years old.  He and his brother have always licked things but his brother who is 5 years old has grown out of that, for the most part, thankfully.

The 4 year old has not.  We have to watch him when we are in different places to be careful what he might lick.  I got a new recliner.  It is red cloth.  When my son and son in law brought it to my house the boys started climbing on it and sitting in it.  Then it happened...the four year old licked it.  After the surprise we laughed.  I guess licking it was his way of baptising it into the family.  

Do you have a licker at your house?  Let me know in the comments.  We don't know any others. 

Four Ways to Qualify For Medicaid

I routinely get calls about families with children with autism and other disabilities needing more therapy or to see specialists that their insurance doesn’t cover.  It could be speech therapy, occupational therapy, ABA, etc. 

At some point the conversation works its way around to if their child had Medicaid it might help with some of the things the child needs that the family cannot afford above and beyond insurance.  Many families are surprised to learn there is more than one way to qualify for Medicaid.  You have four ways you might be able to qualify for Medicaid if you have a child with a disability that I know about.

The first way is to apply for Medicaid.  This sounds strange but many times parents are told by friends and professionals that they will not qualify when they do.  Medicaid takes strange things into account when you apply.  For instance they take into consideration all those medical bill you are paying out of pocket right now.  My experience with parents and Medicaid workers is the Medicaid worker will try to ask you about things you might not of thought about or might not know about as best they can if you explain your situation. 

The second way is what in our state is called the Family Opportunity Act.  It might be called something different in other states.  Louisiana has a program at the Medicaid office for families to be able to ‘buy in’ to Medicaid if they have a child with a disability.  There are other qualifications too.  If the person who answers the phone does not know about this specific program ask for a supervisor as this is a small program.  From what I understand from other parents the fee is very nominal especially compared to what they are or could be paying out of pocket. 

The third way to get Medicaid is if your child can get SSI.  In our state and some other states part of getting SSI is also getting the Medicaid card.  Parents are told from the beginning that income is a consideration and it is, but they should apply anyway.  The child also has to have a severe enough disability. Think about it like this.  If a child qualifies for even $5.00 of SSI they get a Medicaid card.  The cash assistance may not be encouraging to you but the Medicaid may be a big help.

The final way I know of to get a Medicaid card is though the state’s Community and Family Support Services.  These services are at your area Human Service Authority if you are in Louisiana.  If you are in another state ask at your state’s Office or Department of MR/DD.   If your child’s disability is severe enough your child could qualify for what is commonly called a Waiver.  One of the services you get as part of the Waiver is a Medicaid card.  The important part here is that if your child qualifies for the Waiver it is regardless of your income. 

I am sure there are other ways to qualify for a Medicaid card.  These are just the ones I know about for a child with a disability.  Some of these include adults with disabilities.  You have to ask though.  Do you know any other ways to qualify for Medicaid? 

It has been awhile..

It has been awhile.  I guess I ran out of things I wanted to write about.  Though occasionally I come across issues that I want to share.  Check out my next post. 

Second Grandson

We did go to the appointment for the second grandson.  He did get the same diagnosis of autism.  His autism is vastly different than his brother's autism.

His mother did agree to try another medication.  He is so aggressive.  She doesn't like medications.  She took medication for help with her Aspergers.  I tried then and tried now to explain it was just a tool to help with the aggression.  I think she is just at the point she is willing to try anything.  He beats on her pretty bad.  She cries.  Then I am upset.

Then she just called me.  She said the younger one's score was 69 and the older's ones score was 62 on the scoring tool the doctor use.  Then she asked me if that meant they both have autism.  I told her yes.

She missed it.  I just don't know what to say or think....

The Joys of Grandchildren with Autism

I know it has been a really long time since I posted.  I just sort of ran out of things I wanted to say.  Ran out of things to say about the issues my daughters were and do face... Ran out of things I wanted to say about adults with autism and aspergers.

As life has a way of doing though, things change and remain the same.  I live with the daughter with aspergers.  Well if you want to get technical it depends which one of us you are talking to about who lives with who.  I could maintain the house hold if they left and had this house before she and her family moved it so I stand on that. :-)

Anyway, she moved in with the boyfriend and one child.  With in a few months we found out she was pregnant.  Within a week she delivered son number 2.  (That is a WHOLE nother story. How do you not know until you are in the last week you are pregnant for a second child...)

I had noticed some odd things about the first child.  I quickly was able to zero in on some behaviors as child number two grew.  I kept thinking no.  But yes...

We have the diagnosis of autism for the second son because it was easier to identify the characteristics.  We go to the appointment for the first child which I fully expect to be the same diagnosis for as well.

We have gotten EarlySteps for the first child and now services from the school system.  The second child is in EarlySteps now.  I am using everything I learned.  We are even going to try some new things with the boys.  Particularly since the first grandson is so aggressive.

Who knows?  Maybe I will start blogging again regularly too.  Any grandparents working with adult children and grandchildren with autism spectrum disorders out there?

How To Teach Children With Autism

This started out with how to teach my typical child some things he had to learn for school.  It has turned into a pattern if you will to teach my children with Autism Spectrum Disorders.  I keep tweaking it but figured I better get it down while I can.

1.  Talk about it.  What are they supposed to know?  Where is the information?  Did they read it or look at it?  Can they repeat any and all parts of what they know?

2.  Take turns.  Let them be the teacher and ask you questions.  You be the teacher and ask them.  If it is a story role play the important parts.  Act out the things you learn in history.

3.  Tie it to things they know.  Where and when would you use those math facts?  Is there a scene in a movie like what you are learning about in history?  Is there a movie version of a book they are reading in English?  Is it the same or different?  Is there a movie of what they are learning in history?  Is it true or made up?  Which parts?

4.  Is there a visual reminder of some type?  Famous paintings or music that you can attach to the subject?  If it is a social skill can you come up with visual reminders?  Can you write your own story about it?

5.  Is there a game you can use those math skills?  A sport?  How about trivia for science or other subjects?  The ,Are You Smarter than a Third Grader' game?  (Or is it 5th grader?)

6.  Read a book about it.  On a lower grade level if you are reading for information for a school subject.  On a youth level if you are trying to teach a young adult about social skills.

7.  Model behaviors your self.  Later talk to your child about how you did that.

Then do it all again.

Autism Acceptance

I guess I am having a bad day.  I wonder at the emails I am getting about Light it up blue for Autism Awareness.  If someone has not heard about autism and had the opportunity to look it up I would be amazed.

Autism  has been on every major television station I know of at least once and usually multiple times.  Then articles in newspapers and magazines too.  Student's with autism are  in every school I know about.

I would like to see a month or a day for Autism Acceptance.  That is a lot harder.  It is not that people do not know about it.  People do not know what to do our how to act around someone with Autism.  Then again maybe they do not want to.  

No I refuse to believe that.  I believe most people are basically good.  We as advocates, parents, and individuals with Autism need to help them figure out what to do.

Routines

I am trying to get Dominoe into a routine.  Many routines if I can.  She used to be in a routine at home.  Now that she lives on her own not so much.  One of the routines is to get up, take her medicine, get dressed, wash her face, fix your hair, and clean her nails,

Routines also help her use independent living skills she has learned and needs to learn.  Today we had a discussion about leaving her house and
putting on her make up, fixing her hair, putting on a piece of jewelry, and putting on perfume.

She did have eye make up on.  I wonder where all of her jewelry went though.  I told her I wanted to start seeing some at church before I gave her any more.

Anyway over the years I have noticed routines help with her behavior.  We need to work on that.  I have learned routines are important with people who have Autism.  I need to work harder at remembering.  

Fair Share of Services

My second daughter is an adult with Aspergers.  She does not qualify for Developmental Disability Services.  Well she might if I really pushed the situation.  She would just barely qualify.  So over the years we have gotten her services from the Mental Health system or MHRS.  

She has a case worker that can see her up to 3 hours a week to work on independent living skills and a counselor that sees her one hour every two weeks. Oh and a psychiatrist that she sees once every 3 or 6 months.  It works for her.  

One of the things I pay particular attention to is if the case worker and the counselor actually see her.  They complain that she does not cooperate.  I keep saying if she was cooperative she would not need the help.  And it goes on.  

This is the same daughter who has a son who receives early intervention from EarlySteps.  He is 20 months.  She and I have talked about making sure he gets to see the 'teacher' his one hour every week.  He qualifies for that help and he deserves it is my explanation.  

Well imagine my surprise when she text me last week because she had not seen her worker in a while.  What is more she had called the main office.  She had been told the case worker had a visit with my daughter on her time sheet.  My daughter was hot.  Well in the end, it was a mistake.  

I am more interested in the fact she was worried about getting her fair share of services.  You never know when they are listening.