The Words

The Words

Telling her something directly doesn't work. It never did. As soon as it comes out of my mouth it is wrong. Now let there be a third person in the room to talk to and she listens. It is like we need a third person to buffer the words.

I am not even sure if that is the right use of the word buffer. It seems like buffer was an old word that was used when trying to listen to something on the internet.

Communication. The words, it is always about the words. Trying to say what needs to be said without triggering an episode.

Thoughts for today.
Mylinda

Repeaters

Repeaters

Both of the boys have autism but they are as different as night and day. They are also the same too. Both boys will repeat whatever they hear. Unfortunately it is usually cussing. We figure they ge it from the other students at school.

The latest ones though... The youngest one gets mad and says 'you spoiled little brat'. That might be another child. He also came home with 'rude, rude, rude'. That isn't a word we use. I wonder where that one came from?

At least he is using words. When he started school he only had about 10 words. And last but not least when he is talking he isn't hitting.

Life in a world with autism.
Mylinda

What Is Advocacy?

What Is Advocacy?

As some of you know I work at my dream job. I get paid to help families with a member with a disability. I have gotten paid to do this for 25 years. I have used my skills with my own children and now grandchildren for 32 years.  I get every question under the sun about disability which is good.

People call me saying they need an advocate. After talking to them for a few minutes it becomes apparent they want someone to make calls and go to meetings for them. I try to explain to the people who call me that it is not good for them or their children if I do that. They get angry - at first. 

I explain how everyone will start reacting to me and not them. I explain how my doing it for them robs them of the experience and sense of accomplishment of doing it themselves. They still don't believe me until they do what I am coaching them to do. 

Then the excitement!! They know what is like and they own the skill! It would be so easy for me to make the calls or go to the meeting for them. I like being the savior for them. It is like mainlining adrenaline.  It probably isn't good for me AND it isn't fair to them.

Just my two cents, 

Mylinda

Letter To My Son

Letter To My Son

Hey Son I want to talk to you about what do you do next. You got the medical evaluation that your child has Autism. Somewhere in the report it gives you recommendations. You may or may not have investigated these places already. If you have, call those places again.  If you are on a waiting list tell them you are checking. If you are not on a list and they have one get on the list. Make sure they take your medicaid Managed Care Organization (MCO) insurance company. Then call them to touch base with them every two weeks. Put it on your calendar to do it.

If it was recommended you get speech therapy or Occupational Therapy  for your child you look on the back of his MCO insurance card (not the medicaid one the other one). There is a phone number. Tell them the doctor's recommendation and you need a local Speech Therapist, Occupational Therapist, Physical Therapist, or ABA provider in your network. If that does not work tell the people at your MCO you need a special needs case manager. Then tell that person what his and your needs are. 

Get a notebook for your child. Put his evaluation and other papers in it. Write down the name of who you speak to, the date, the phone number, and what you spoke about. You will need it to try and 'catch' your child up and keep him up with his peers. I have seen people do it. I know one guy with autism who last I heard had a batchelors degree, a job, a wife, a house, and was working on a masters to move up at work. I know others. Your goal is to raise a happy healthy human being on whatever level. It is possible but complicated.

As always if someone tells you something that does not makes sense or is just plain stupid call someone. Call several someones. Call me. 

**This is just a scenario for Louisiana. There maybe other steps depending on where you are located.

Melt Down

Melt Downs in Adults

Melt downs in adults with autism is really not a lot different than melt downs in children with autism. They seem to happen at random. They usually seem to have very little to do with what is actually going on. It is further complicated when you have an adult that is fairly verbal because he or she can make a fairly good argument about what is going on. At least until you recognize the argument is ridiculous..

We are going through a lot of changes including a possible move. I can feel the melt down just below the surface. I can hear it in the tone of voice. Thankfully there is some distraction in that we want to go through our things and get rid of stuff that no longer serves us. Organizing things is a great distraction. We will see how long it lasts. 

I keep trying to deflect the melt downs with varying degrees of success. I don't believe ignoring it will help the upset from the changes during a move even though we all want to move. 

Till next time, 

Mylinda

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....