Archive for the ‘Autism’ Category

If that makes me a liberal addict, then so be it.

Attending a protest rally at the state capitol. No Accountability? No copay!

We have been so blessed to live in Pennsylvania.  My boys get treatment and therapies for their autism that they never would get anywhere else, and that is what has kept us here in the Keystone State.

When our sons were first diagnosed, I was advised to apply for Medicaid, or Medical Assistance (MA).  I didn’t want to do that.  We didn’t qualify financially. But then I learned that, because we had kids with disabilities, we fell in a “loophole.”  We could get MA for them.  And unless we did have MA, my sons could not access certain necessary therapies and services.  Private insurance would not cover the treatments.

I continued to ask service providers, such as music therapist and Wrap Around service agencies, if there was any way I could private pay.  The answer over and over again was “No.”  MA was the only payment they would take. For us, MA was a necessary evil.  We didn’t want to take advantage, but we had to do so if we were to get help for the boys. So I swallowed my pride, went to the County Assistance Office to apply (I went at a slow time so that no one would see me… only to see someone who went to my church), and became a reluctant welfare recipient. It was one of the most difficult things I have ever done.

During the recession, we were relieved when PA passed a law that our private insurance had to cover autism services, but then were very disappointed when our boys were denied by our primary insurance.  We discovered that the law wasn’t being uniformly enforced. What was supposed to save the taxpayers $33 Million ended up saving about $980,000. We had to stay with MA whether we liked it or not.

Now there is an outcry, it seems, that families like mine, who don’t qualify for MA financially but have kids with disabilities, are taking advantage of the system and bankrupting the state.  We are abusing the system and getting a free ride.  How dare we.  And now we must pay copays which will be capped at 5% of our gross income. (None of our our expenses count.)

My feeling that we could pay a fair share has never waned.  However, I am so wary of the system. A quick list of reasons for my  misgivings:

  • We have a law that private insurance has to pay for autism services.  It’s not being enforced.
  • For three years in a row, the County Assistance Office (CAO) has lost my annual MA renewal paperwork and my boys lost services due to clerical errors.  This year, my reapplication was “stuck” in their computer system.   Of course, I wasn’t notified.  The services just got cut off.  When I called to see what had happened, I was told that they could see that I had indeed gotten all my paperwork in, I had a confirmation number (I submitted online), I did everything I was supposed to do. But they couldn’t access my reapplication, and  fixing it was my responsibility.  I went to the CAO three times to submit the same paperwork over and over and still had to call a supervisor… who ended up fixing the situation in 30 minutes after two months of turmoil.
  • I just got a confirmation that the DPW received my application for CHIP (Childrens Health Insurance Program).  But I didn’t apply for CHIP.
  • Other parents have been notified of their new monthly copay amount,  based on their gross income as calculated by the Department of Public Welfare (DPW).  Unfortunately for them, the DPW says that their gross income is thousands of dollars higher than it actually is.  And, as I said above, they have “no expenses.” The copay cap is then based on an inflated bogus income.
  •  When I call the customer service center with questions, they tell me to contact my case manager. When I call the MA Case Manager for the boys, the phone rings at least 20 times and then I am disconnected. I can’t even leave a message.
  • Our MA does not give us a statement of how much they are paying for services.  I don’t even know how much they cost.  How can I make a smart decision about service providers and copays when I am kept in the dark about cost?

I haven’t received my letter telling me what my monthly copay cost will be, but I am already worried. If the Department of Public Welfare can’t keep track of our paperwork, can’t add up our pay stubs that we submit annually and  inflates income, doesn’t answer when I call, and doesn’t let me know how much my kids’ services actually cost, then how do I know that our copays (which will probably be more than what we pay for our private insurance) are fair and going to the providers? How do I know we are not being duped?

I feel  trapped in a system where I have to have medicaid, and then punished for being in the system by being charged an exorbitant copay that doesn’t take into account all the expenses of caring for kids with special needs.

Our Governor made the comment that people are “addicted to services.” Other people say that the liberals are just making a big ol’ stink.

Well, if swallowing my pride and getting my boys services the only way I know how, and protesting when my boys and my family are unfairly punished for being trapped in the system makes me a liberal addict, then so be it.

Thanks for listening / reading my long post.

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His brain just works differently

Last school year, my daughter Meg got off the bus one day and looked a little dejected.

She said, “Margie (not her real name) says that Philip’s brain doesn’t work.”

I said, “What?”

“Margie says that Philip’s brain doesn’t work.”

“What do you think?”

“His brain does work.”

“How did it make you feel when Margie said that?”

“Sad and mad.”

“What do you think you could do next time?”

We then began to discuss how Philip’s brain does work, it just works differently.  I was all prepared to move on from this incident until she came home again with the same story.  I talked to Margie’s mom, and she said she didn’t know where that came from.  She said that her explanation is always that people with special needs think differently. (Margie’s mom is trustworthy, and I believed her and still do.)

End of story.  Or so I thought.

Fast forward to a couple of weeks ago. I had Meg and Margie in the car, and Margie once again noted how Philip’s brain doesn’t work.

I said, “Oh, his brain does work.”

She asked, “Does it work at home?  Because at school it doesn’t.”

I went on to describe all of the things that Philip can do… math whiz, musical genius, excellent reader, etc.

Then I said, “His brain just works differently.”

“Oh.”

Meg then jumped in and shared all these wonderful things about her brother.

I hope that Meg learned a little bit about about how to advocate. Advocating for my son and others who are different doesn’t mean going on the attack.  To me, advocating means speaking the truth, and educating others on what’s really going on.  As in, my son is smart.  He just communicates it in a different way.

Speaking of visuals…

A quick post to let you know of a free graphic organizer site I just found.  It has what our school would call “graphic organizers” but they call them “thinking guides.”  Wow, maybe a new way to conduct “family meetings”?

http://www.exploratree.org.uk

Yes, my boys will be responsible, successful, tax payers

I say this only half jokingly.

One of my favorite cousins in the world coaches me to use the words “so they will be good tax-paying citizens” when I advocate for my boys, whether it be in IEP meetings or community settings.  They need appropriate educations so they can grow to be good tax paying citizens, darn it, not people who take money from tax payers to survive!

At first I balked at such language, but when I tried it near some people who had some political pull, I was surprised at how much it got their attention.

I was a parent panelist for a group of early interventionists a while back. When one of the young therapists asked me what my goals were for my children with autism, I said my biggest goal was for them to live to their fullest potential– with jobs, independent living, and lives that they loved.  I suppose another way to say that would be responsible, successful, tax payers?  The therapist seemed to think it was too lofty of a goal.  You wait and see, Mr. Therapist! Haven’t you heard of Temple Grandin?  Sheesh!

I read this article about a place that recognizes the gifts of adults with autism.  They educate and coach them so that they can get meaningful jobs that they love all while making a good income.I have so much hope.  I actually wrote to the head honcho of this organization and gave him three reasons why they should open a campus in my area. (Although I did used to joke with hubby that when I retired I wanted to move to Plano.  Divine intervention?  LOL.) Read all about it!

Star Local News > Plano Star-courier > News > NonPareil at SMU-in-Plano

Sibling love

Today I received the most beautiful photos of my family. They showcase the love that my kids have for one another.

Let me back up for a sec. My friend and fellow “autism mom” is learning to be a photographer.  Well, actually, I think she already is a talented photographer, but she’s taking classes to get the “credentials” (oooh, aaah).  This past fall she took a film photography class and asked if my family would be willing to be the subject of her portfolio.  As the humble mom that I am (ahem…) I said, “Of course!”

Her project for this semester was named “sibling love.”  In it, she had 3 pictures.  One of Philip (10 year old, has autism), one of Meg (6 year old, no diagnosis), and  a picture of Philip and Meg sitting in the tree in our front yard and smiling at one another.  My heart just melts!

Meg is Philip’s best “play therapist.”  She is the one person who relentlessly taught him to pretend:  acting out stories they see on tv or read in books, and running  like a horse, among many other things.  She is his partner in crime when it comes to ganging up on Mom and Dad.  She is the dancer when he plays his keyboard.  She is his translator.

She adores her oldest brother, too, especially now that he has a tv in his room.  They want to have “movie nights” and try to sneak in the not-allowed-except-in-the-dining-room snacks that they love to eat.  She is his cheerleader and defender.

She is trying to figure out the world right now and is wrestling with the autism thing.  She recently said to me, “Philip has whole autism, Josh has half autism, and I have no autism…. right?” Right, honey! Her explanation of the differences on the autism spectrum are as good as any others I’ve heard lately.

I am so grateful that she loves her brothers.  I am so grateful that she sees the gifts in them.

Although I do worry sometimes that Meg doesn’t get enough attention from Mom and Dad and that, as a sibling of two autistic brothers, she has quite a heavy load to bear, I celebrate the wonderful of her love for them (and vice versa), and how they’ve grown because of her (and vice versa).  I often witness her acceptance of others outside of our family who are different.  She is growing into a compassionate, accepting, loving person.

Words

I am thankful for making words.

I read this and froze in my tracks. My son wrote this on his construction paper “leaf” at school for Thanksgiving 2010.

I began to remember all the times we wondered if he’d ever speak to us.  I remembered when he was three years old and, putting him to bed one night, he said, “I love you” to me for the first time.  I cried, and told my husband and called my friends and family, even though it was late.

I recalled how we used to not give him anything he wanted, putting everything out of his reach, until he would say the word for the item.

I remembered how his only words were echolalic terms.  He would only repeat or “script” words from movies, books, and songs.  I remembered how happy I was when he told me the first time, “I want…. Daddy?”, as if he were unsure he could want Daddy.  I remember (as does my husband) how I unlocked the bathroom door where Daddy was… um… busy… because Philip used a complete sentence and expressed that he wanted someone he couldn’t see for the first time!  Philip stayed in the bathroom with Daddy until Daddy was done.

I remembered how we slowly and painstakingly helped him ask questions and request what he wanted, how we used and are using sentence starters to help him have conversations with friends, how we role played before social situations what he could say when someone asked him such things as “How are you?  Do you like school? What grade are you in? How old are you now?”

And, more recently, I remembered with tears in my eyes how happy I was when I asked my husband if he would put Philip to bed and Philip said, “Daddy, tell Mommy no.”  How he answered me now when I asked him how his day was or what he wanted for dinner.

Philip wrote, I am thankful for making words.

I am thankful, too.

Welcome to the lighter side

Ahh, autism.

When my son was first diagnosed, I had a panic attack and then went into an anxious depression.  I believed all my dreams were dashed.  I wondered who this boy I called my son really was.  Previously I was afraid of people with differences or disabilities. Was he now one of “them”? I wondered, “What did I do to make my boy this way? How can I fix it?”

My stepson, who didn’t live with us at the time, had been diagnosed wih autism 6 months prior.  The day of my son’s diagnosis, my husband and I decided to stop trying to have more children. The very next day, I discovered I was pregnant.  I just knew it would be 3 out of 3 with autism and that I wouldn’t be able to cope.

It took me a few weeks to realize that my boy hadn’t changed.  He was still my son– my pride and joy and light of my life.  I dropped the self-blame, and set out to learn all I could about autism, and how to have a relationship with my son and raise him to live to his fullest potential.

About a year after his diagnosis, when my daughter was 6 months old, my stepson unexpectedly moved in with us.  I went from 1 to 3 children in 6 months, and two were on the autism spectrum!  I once again went through a period of extreme anxiety.

I don’t remember how long it took, but one day I saw the lighter side. I could either approach this with a sense of humor or drown in frustration and sorrow.

I chose the humorous approach.  Then came advocacy, social stories, educational journeys… and I approached them also with as much humor and lightness as I possibly could.

Humor and lightness are the approaches that work for me.  Yes, I still get frustrated, and yes, we still have our “moments”, however every day there is laughter in my house.

The goal of my blog is to share with you the ways I have found to lighten the load and brighten my days, and share what I have learned and continue to learn along the way.  Comments are welcome.  Thank you for stopping by!