A Few Ugly Truths About the World of Autism

Ugly Truth No. 1

  I went to a assistive technology conference the other day on a fact finding mission. I hoped to learn what Ipad like communication devices were out there and why they were appealing enough to local disability boards to pay for.  I came away from it with confirmation of what I had already suspected. Autism is a money maker and this holds true for other disabilities as well. Oh how this makes me sick to my stomach. Be informed, be educated about whats out there and beware. Balance what you think is working with your child, or might work with what the professionals tell you that you need. I have come to the conclusion that until there is a cure for Autism, then my input is just as good as anyone else's.

Ugly Truth No. 2

 Having just been through another IEP meeting, and school meeting I can tell you that the powers that be will distance themselves from being responsible for paying one red cent more than necessary if they think they can possibly weasel out of it. This is true of the public school system and private schools. They do have one thing in common though. They will more than happily take any funds they can get from the state but gripe about having to follow the guidelines set by the state. You can't have your cake and eat it too folks.

Ugly Truth No. 3
 We are "fortunate" that our state offers a Autism Scholarship. Let me explain why I am not overjoyed with this program. First, there is a cap on this money. Sure it sounds like a whopping amount and like it will give you some real options. Then there are the rules and regulations of the program which are many and varied. I chose to send my son to a private school. I am sending him here because he needs to be in a typical classroom all day. He needs to model off of these kids. I am also sending him there for a religious education, because the academics are more challenging and the school has recourse to remove a child if bullying should become a problem. However, I need an aide and a consultant. The aide and consultant must be on the approved provider list. Guess what you find on the list? Companies that are charging more for aides than the public school system, "program set up fees", etc. because they can. They know as long as they are on that list they can charge what they want and the scholarship will pay for it or medicaid waiver services. See ugly truth no. 1.   The teacher is not comfortable without an aide all day initially until everyone has agreed that we can phase the aide out. At $25.00 per hour all day, the scholarship gets eaten up quickly and then we dip into our own pockets to fund the rest as well as pay for a $80.00 per hour consultant.$500.00 program set up fee, and provide or own services such as speech therapy, Occupational therapy and lest I forget, tuition.See ugly truth no. 2.  The law prior to this great scholarship would have would have forced the public school district that we pay taxes to send our children to, to provide services aide, consultant, etc. to my child in the school of my choice. School choice? Fat chance.

Articles, Theories and Therapies Oh My!

So...once again I am reading yet another article about the newest therapy on the scene targeting non-verbal autistics. After reading on about this "wonderful" new therapy, I notice a short "by the way" type of comment included in the description of this therapy that states that a augmentative communication device was used. Now, I don't claim to be an expert on any other non-verbal or verbal autistic with the exception of my son. You have to wonder though, was it really the therapy that made the difference or the augmentative communication device? Here is my theory:  Let's assume for a minute that non-verbal autistics are taking in and processing 100 percent of  all incoming language. The brain will not allow the outgoing response/request to take place verbally. Introduce a device, any device, that has a communication program and provide training to use that program. That could be any of the augmentative communication devices ranging from $1000.00 + to a  $450.00 first generation Ipad. Is there any wonder that over 75 percent of the study group showed vast improvement? Yes, by all means do speech therapy, encourage speech every day all the time, demand it even, but give the child a tool to communicate with, train him to use it and I would be willing to be that the child has less meltdowns (he is getting his needs met).  I have read that some of these children are passive and have low self esteem. If you couldn't speak and had something you wanted to say, wouldn't you have low self esteem, wouldn't you react emotionally and physically from sheer frustration? If this is way off base, how do you explain the non-verbal autistics that have blogs, write speeches, communicate fluently and in depth with a communication device? So thanks for the new therapies, but I think we will pass. You see, we are working on our on therapy. Faith, hope, love and Proloquo2Go app for the Ipad.

Ipad Advocacy and Local Government

  One of my many projects lately is what for all intents and purposes I will refer to as the Ipads NOW! project. Our County Board of Disabilities does a great job. People with disabilities move to our county just to get the services they offer. It was our dumb luck that we were here when Connor was diagnosed. After we purchased the Ipad for our son and had great success with it, I had to ask myself  "what happens when a family can't afford one?" What kind of impact would it really make on a non-verbal child/adults life? After a lot of poking around for info as it turns out quite a bit. So why if our local board was providing assistive devices,etc. would they not pay for an Ipad? I posed this question to my sons preschool director. I was told that an Ipad was not considered a assistive communication device. It was too risky to pay for a $450.00 Ipad because another family member may use it for another purpose. They will however, pay for apps. They will also pay for a much bulkier communication device that only serves one purpose at $1500.00 on the low end going up into a few thousand dollars. That one left me scratching my head.  So I pressed further, was the board open even a little bit to further discussion about the Ipad? Yes, but what information would hold any weight when it came to changing their decision? The answer was clinical studies, the wide acceptance of the Ipad as being a assistive communication device.

  In the mean time, I stumbled across something called the Assistive Technology Act of 1998. What the heck was that all about?! I googled it and found out that there are local entities that carry out this law by providing lending libraries, etc. with communication devices etc. I even found one in our area. I called to see if they had Ipads available. Low and behold they had them on order and there was no one on the waiting list. Could that be because NO ONE KNEW ABOUT IT?!  I felt that it was my patriotic duty to spread the good word! I downloaded the application and immediately contacted my sons therapists to see who was interested in a clinical study. I am happy to say they are all either first or at the top of the list to get one. I also passed out applications at my sons school for the parents and a few people in the speech therapists waiting room.

  My current plans are to do some research myself, put together a power point presentation and in conjunction with my sons speech therapist and her study results and meet with the board at a later date this year.

  Sometimes you can't solve the problem but you can give it a great big shove in the right direction.

Advocacy As We Know It

When Connor was first diagnosed, I read a ton of information. One of the common phrases I ran across was "As a parent, you are your child's best advocate".  Well, I knew the basic definition of advocacy, but I had no idea how it applied to me. Things were fairly simple and ran smoothly in the beginning so there were really no battles to fight, no one to "enlighten".  The same month that Connor was diagnosed, a couple of parents from my sons school encouraged parents to join them for the local Autism Speaks Walk.  I couldn't bear to participate. You see, if we walked I would have had to admit to myself that he was autistic and my dreams for Connor were not what they used to be. At the time, that was as scary as looking the devil right in the eyes. "Maybe next year." I said and made our excuses.  This past year I stumbled into being team captain for my sons school team. I organized, printed flyers, raised money and said "yea team" periodically. We walked the walk, raised more money that I would have dared hoped and had more team members than I would ever have counted on. My friends, it felt good, REALLY good. I learned something very important at that walk. When your child and family are living with autism (which is neither curable and in a lot of cases, you don't even see it in a child) it is pure pleasure to feel as if there is something you can fix. Not only can I advocate for my child, but for other children as well. This is just one of the ways I have found to date to advocate for Connor.  Will I walk again this year? You bet! Heck, I may even jog....;)

Autism, Ipads and Us

When my husbands work offered him a one time deal on an Ipad, we jumped on it. I'll admit, there is not a person in my household that is not a new technology freak. The sole purpose for this Ipad was to get one (hahaha!) application which was a communication app. for my son to use. Although he has some emerging language and his vocabulary is increasing, it is increasing at a rate that we cannot keep up with and it is not clear. He has much difficulty with a lot of consonants making it impossible for anyone not around him 24/7 to understand. Well, several apps later we have found that it not only helps him to get his words out, we started getting a really good idea of what he does and does not know academically. We also found out a few things that his therapists were unaware that he can do if it is presented to him via the correct app.  If Apple only new the good news I have spread about their product I would be on the payroll. I mean, holy cow. He IS there. The Ipad confirmed what I had always suspected. He hears and understands everything we say. Even if he is not looking at us. He has learned everything he has been taught at school in the past two years. He has a slight delay in responding to a question and you cannot ask those questions back to back.

  It occurred to me that maybe what we need to do is give these kids the right tools to communicate with. How much frustration on the parents and child's part might that cut down on? How many meltdowns might it prevent when the child can get his feelings out and needs met right away? In my sons case and others with processing delays, we need to be better at recognizing that there is a delay and know the right way to ask the child a question. When I pick my son up from school each day I usually arrive a little early, in time to see the other kids for a little before they leave. I haven't seen one of those kids on the spectrum that didn't look as if they had something to say at one point or another. I know my son does.

The Elephant in the Room

Have the people around me changed or am I just becoming more jaded over time? Back in the days before Connors diagnosis I ran a play group at my church. Our children played, moms smiled and chatted, grateful to be be out of the house and talking to other adults. Now, my oldest is in first grade and my son will be entering Kindergarten at her school this fall. She is excited that her little brother will be going to the same school. My husband is working his hind end off to send them both there. I am working my rear off as well just trying to get him enrolled and set up with an aide for next year. Mainstream school! We actually are going to be able to mainstream him! I was able to find a potential  aide who, get this, is actually excited at the prospect of working with my son, believe me when I say its not the prospect of what she is getting paid that is exciting to her. My cup runneth over with joy.......that is until I had coffee one morning last week with one of the afore mentioned mothers from play group. Her son will be in my sons class and I actually thought that would be a plus prior to the coffee incident last week. She asked me how it was going with enrolling my son in school.

"Great!" I said, "He will be able to use his Ipad to communicate in class."
 "Really, what if other parents call and complain that it is a distraction or demand that their child should use one too?"
"Well, they are welcome to call me with questions. Besides that, it will be written into his IEP so there shouldn't be any question about him being able to use it."
"Well, I know that Mr. S. (principal) doesn't like distractions in the classroom."
"Well he really won't have much of a choice. There are laws in place protecting my sons right to use his Ipad and the school is not exempt from those laws".

Lets just say the conversation wasn't very pleasant from there on out. I tried to do the right thing. I apologized for raising my voice, I explained that I was under a lot of stress right now trying to get him enrolled and that it is a particularly sensitive subject. She had caught me off guard. I can handle one day at time, more than that and I do believe I would step right off the nearest cliff. I had to practically sell my soul just to get him into Kindergarten at this school that I truly believed was the best place for him and she brings stuff up like this? In the week following I found out that If I had just sprouted horns I wouldn't have been treated any differently than I am now. She was quick to spread the news of my negativity to other moms at the school, no doubt I am now labled as the angry mom with the disabled child. On that note, I am reminded of an Irish toast from the movie "The Quiet Man".  

    "To those of you who like me, God Bless you.
    Those that do not like me, may God give them
    a little twist of the ankle so that I might know them
    by their limp".