Happy Anniversary

Today is an anniversary of sorts. Three years ago Connor was a happy little boy who played by himself, showed a great facination for playing cards, and other random items. He always knew how many of what he had and if some were missing we searched until we found them. He smiled but didn't speak. We never thought we would see the end of diapers......Three years ago he was diagnosed as being Autistic.

As parents, we were just beginning to figure out how to deal with his diagnosis. We were so bent on figuring out how to get the hours of ABA therapy in that the psychiatrist reccommended. So frightened that we weren't doing enough or the right things for him.

Three years later...Connor is still a happy little boy. He is beginning to play with and initiate play with others. He plays with his toys, loves superheroes, the Wii (who doesn't?), jumping on the trampoline, playing outside, and the list goes on. He still has those big heart melting smiles. He has such a good vocabulary (selectively used) I can't quite refer to him as non-verbal autistic. He says "no" particularly well (little stinker!) We did see the the end of diapers thank goodness! Now I just need him to flush the toilet. Ah well... its an imperfect world.

As for Marc and I.... we figured out that what works for him is time and patience along with an aide who has very good instincts and speech therapists who love what they do. We assume that he can learn as well as his peers, and deal with what he can't do as it comes up. We give him the tools to give him extra help in school as he needs it. We help to bring awareness to the school and church community by helping to start programs to benefit him and other children with disabilities because my Conor isn't the only child with a disability, and maybe we can help a few "newbie" parents figure it out or at least  let them know that they aren't alone.

We've all come a long way in three years, so happy anniversary to us and I look forward to many more happy anniversaries.

The Last Day

Well, yesterday was Connors last day at preschool. Its ironic that while our kids played (in the vincinity of each other, for the most part) the parents and teachers were the ones that cried. You see, some of our kids are moving on to Kindergarten and Connor is one of them. As a parent, I can tell you it hurts so very much in so many ways. We feel like we are little fish being thrown into the ocean. Now, just as we felt that our children were in a comfortable safe place and we felt that the teachers who were so gifted and we had become so close to, we had to move on. I watched teachers and parents cry but I tried so very hard to pretend that we would be back as usual the next day. If I had really let myself go emotionally I am sure I would have completely lost it. Now, we will be on unfamiliar territory. Some of us will learn far more about IEP's and how very much they will mean to us and our children. Some of us will forgo the normal route of schooling and set out to make a change in a school that doesn't know very much at all about the autism spectrum. This is the route I have chosen. I am scared. Did I make the right choice? Was it really for me or for Connor? What happens if this experiment fails?What next? I have done all the paperwork, arranged the financing, talked to the teachers and principal, hired an aide, and even helped to start a support group. I'm not sure what else I could possibly do. Still I am scared that it will all fall apart and then our choices will be few.

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.

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....;)

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.