Developing a routine

School has been in session for several weeks. 

 

I think we are finally getting into the swing of things,

getting to school in the morning,

getting school work done,

and working on an online class. 

The goal is to get her in school. 

 

She goes into a room with no kids, only me  

• She works at a computer

  viewing lessons for an online class. 

• She goes at her own pace.

• Her teacher checks in almost daily

   

Working on the computer seems to be a good fit for her. 

 

Her teacher hopes to add AP classes to her class line-up, at some point. 

 

Now that the school doesn’t seem so scary to her

(since she spent the summer going into the school 4 days each week),

I hope things will continue to progress! 

Behavior Modification

Applied Behavior Therapy works.

Medicaid was approved for my daughter and then the specific therapy was approved.

My daughter went from showering once every 7-9 days to at least every other day.  She brushes her teeth twice a day and FLOSSES.  If you knew how it had been, you would be as excited as I am.

I think just about anything is possible now!!! 

Just another day…

The system of tasks and rewards seems to be working for my daughter.  The therapists continue to tweak the system.

Fewer tasks, which are more important, will be rewarded with the use of her Kindle. The Kindle Fire is her favorite electronic.

Other tasks, which have become easier to accomplish, will be rewarded with her other electronics (Nintendo DS, computer, & iPod) or treats.

If this were a perfect world, my only jobs would be:

• to help my daughter work on her verbal skills
• to track her verbal responses (whether appropriate or a grunt)
• to track whether she does tasks and what type of prompting she needs
• to prompt her to accomplish necessary tasks
• AND, of course, to take care of my other children

Before having children, it would be wonderful if a behavioral specialist could work with parents to train them.

On another note, it seems as if there is a good chance Medicaid will be approved to help pay for the  therapists.  Social Services uses all sorts of acronyms for their programs; they seem to think everyone knows about all of these programs, as they speedily reel them off.  Well, I’ve become bolder and have begun stopping them to have them explain what the heck they are talking about.  Although my initial request was for help for a therapist, they routed the application to a department which deals with people who need full-time care by a  nurse.  I told the first worker that that was NOT what I was looking for.  It stayed on track for those services and I continued to say that was NOT something we needed.  Finally I was sent a letter stating we didn’t qualify for full-time nursing services…  Really?  Hmm.  Okay…  That’s good, because as I told them from the beginning, that is NOT something we need or want…

Medicaid & Social Security

At the various IEP meetings at the public school, I was advised repeatedly to apply for Medicaid and Social Security Disability for my daughter. The websites for these government agencies are somewhat less than user-friendly. Each time I arrived at the sites, I searched over and over trying to find the applications. After clicking links, backtracking, & starting over, I found the right pages.
I sent the Social Security application to their office and am waiting. I’ve been advised that the application will probably be turned down about 3 times before being approved.
Several weeks after hand-delivering the Medicaid application, emailing & calling asking for the status of the Medicaid application, a man called to let me know he would decide on a recommendation, which he would forward to someone else. I suppose a lot of people who apply for Medicaid aren’t honest, because this man questioned everything I told him. The man on the phone was distrusting; he seemed to think I just wanted a hand-out… He let me know that another division of their agency would contact me to set up a time to interview my daughter. Good luck to them; the school fought me until they met her.  Now some school employees are fighting for us.

If I really had wanted government help without being desperate, I would have applied years ago. I definitely qualify. The only reason I applied was that the school has said that therapy for my daughter is terribly expensive and that she needs Medicaid and Social Security Disability.

We’ll see how it goes.  The forms seemed long, ambiguous, and lacking in pertinent questions.  Whatever information they need, I’ll be happy to provide.

Progress

In the past two days, my daughter has done more than she would normally do in a week. The system of rewards the therapist helped set up is working! I had tried something similar but I didn’t have it quite right. I would take away things my daughter enjoyed, then give them back when she had done what I had asked. Sometimes it would take days for her to do whatever it was. NOW she gets rewards after doing certain items on a list. The rewards include time limits; she gets to use the things I used to take away for a set period of time.  I do have to struggle to get the items back once her time is up, but I hope that will eventually not be a problem.  I have found that she can be motivated!!!

I am so very excited!  There is hope!!!!

Let’s try something else…

When my kids were little, they were rewarded for good behavior and not for bad behavior.

Typical.

Now I have to treat my 15 year old daughter as if she were a two year old.

The therapist helped me set up a system of tasks & rewards.

Today my child took a shower after a week of not bathing.

Shower = 1 reward

The reward she chose was to use one of her electronics for an hour. After the hour was up, she clutched it to her chest & grunted. I had to pry it from her arms. I felt horrible wrestling with this child, but, of course, I couldn’t give up. She couldn’t just keep the reward when she knew ahead of time that the reward was for an hour.

I’ve been warned that my daughter may regress some.  It’s so frustrating having a child who acts so much younger than she is…  I wish she could be a “normal” difficult teenager.  At times, this type of difficult seems to almost be too much for me.  I’d like to sit down and cry.  Nothing to do but keep going.

I love her and will do whatever I can for her.

School

I think we are finally making progress! It is so exciting making even tiny advances, but now I think the improvements are remarkable.  All it took was working 5 years to get the school to do a child study.

• The school assigned a casemanager.
• The social worker applied for funds for a therapist.
• An IEP was created and continues to be tweaked.

Tuesday was my daughter’s first “day” back at school.   She essentially had a room to herself where we went 45 minutes before the school day ended.  One of her friends came and worked with her on an art assignment.  That part went beautifully.  The second half of the plan bombed.  Her home-bound instructor came to take over when my daughter’s friend left.  As soon as the casemanager left the room, my daughter put her head down and for the next hour and 15 minutes, she did nothing.  The casemanager had said that as soon as the home-bound instructor came in the room, my daughter’s whole demeanor changed.

Today we tried again.  It was a bit more difficult to get her to go today, but the lure of seeing a friend helped.  She worked on art until her friend  and the aide left.  The casemanager let my daughter know that she only had to do a certain number of math problems, then she could go home.   For most kids, I think that would be incentive to work quickly (not for my child…).  She put her head down.  Later she raised her head but she did no work for the next hour.

It is positive that she has gone in the school twice now.  It is also a big step forward that she has worked on her art assignments in the school.  It may not sound as if we are moving forward but, believe me, we are.  Before we started working with the therapist, my daughter spent most of her life in her room away from people.  She now has gone to school twice!  Baby steps are good