Friday, February 21, 2020

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.

Monday, February 17, 2020



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.

Tuesday, February 11, 2020

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, 

Friday, January 17, 2020

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.

Monday, January 6, 2020

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,