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.

Angels Among Us

   The more years that pass, the harder it seems to be to maintain friendships let alone develop new ones. Our lives get busy when children come along and careers mature. When you have a child with Autism it becomes even more difficult. One or more therapist visits are a weekly occurrence. My "coffee club" consists of chatting with Connors preschool director after I drop him off in the morning. My sons therapists and I are pretty buddy-buddy and I am convinced we will be seeing the speech therapist until she retires. She has been working at her job now for 2 years. When I talk to the therapists, they know what I mean. When I asked them to join us on the Autism Walk, they were there. One of the therapists had just had her baby a few days before! They have moved their schedules around to accommodate Connor more times than I can count and have been such a gift to us! One good thing about Connors diagnosis is that I never would have met this wonderful, talented, dedicated group of women.

  I now believe Connors preschool director, Paulette was sent by God to guide me and other parents like me through through this period in our lives. When I met Paulette, I had little to no idea which way to turn. She has helped me to help myself  carve out the best path I possibly can to help my son reach his full potential. She also pointed out that I had choices. I could chose to do ABA therapy or any of the other thousands of therapies, etc. out there. The point was that I was doing something. She has done so much more above and beyond the call of duty than I could possibly even recall. I can say that she inspires me daily to see beyond my own situation and reach out to others because you  really don't need to be an expert or have solutions or even vast amounts of time on your hands. Sometimes all you need to do is reach out to another parent and say "Yep, I hear ya."

 

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".

Prologue: How I Fell Down the Rabbit Hole

   Once upon a time, about 2 years ago,  my second born was diagnosed with Autism. Oh it wasn't entirely a shock to me and most definately not to my husband Marc. I always waited for my son Connor to achieve the next milestone, at first early (he was my son, he had to be a genius!) and then I just hoped he would reach that milestone on time (okay so he was just average). He always liked to wait until the last second to do everything; crawling, walking, etc. Eventually he did it. Then it was time for him to talk. I listened patiently for words. I compared him to other children his age who were starting to speak. I was told many times over by family and friends "he's just a late talker." At this point I was convinced but with a little voice of doubt in my head that I told to shut up on a regular basis. Marc was was not so convinced. We had him tested through our school district to get him into a preschool that would help him with speech development. Even though the program was mainly for children on the Autism Spectrum we didn't have a official diagnosis from a medical professional. I held on to that for as long as I could.  Then, 3 doctors visits, testing done by a team  of specialists, and several IQ tests later we were called in to speak to the team that tested him. As they entered the room, I noticed the chairs seemed to be sitting further back from us then they had been before. Then they told us our son was Autistic. Okay, so we were somewhat prepared for this, but why did they look as if we were going to flip out and go on the attack? My husband and I knew next to nothing about Autism at the time. The next thing I know, he is receiving speech therapy and the doctor is insisting that he needs several hours of ABA therapy, a team consisting of 3 people a psychologist, consultant, and therapist. All at the bargain price of $70-$80 dollars each. Were they serious!?  What on earth was ABA therapy anyway? A cure?  Were we going to spend the rest of our lives in therapy? Why was I getting calls every other day from a consultant asking what our plans were for him? Yep, that's when I fell down the rabbit hole. I have felt like Alice ever since.