Autism Benefits galore

It's been awhile, but I'm back for now. Alot has happened, but it would take forever to explain, so I'll just worry about the good things for the moment.

First, Step by Step is still open, and looking good for a fall enrollment. It's exciting to see that. Right now, they are holding their first summer camp, and if the first week is any indication, it's a fun time. Logan comes home everyday happy and talking about his experiences that day. It's great to see and hear about those everyday.

Today was a great day. Melissa, Logan and I attended the Autism benefit in Westerville. This was a charity softball game. The teams were made up from Channel 4, Channel 6, and Channel 10, as well as QFM 96. Jerod Smalley, who is a sports reporter for Channel 4, has a son who was diagnosed with Autism. I got to meet both Jerod, and his son, Brady during the game. Jerod has a blog about his son and the daily life of a family with a child with autism. I also got to meet Dimitirous Stanley, a former wide receiver for Ohio State. They raised over $3000 for the Children's Hospital Autism Center. There were also other autism centers with booth's set up, such as Step by Step, Helping Hands, and one other that I can't remember off the top of my head.

The next big event that I'm aware of is the Walk for Autism that benefits Autism Speaks on Sunday, October 12th. I've created a team. Just click this link and you'll see the team that I've created for this event. I hope to see you there. Even if you can't walk or won't be able to attend, you can still donate and credit our team. It's all for a great cause.

Oh, and here is a picture of Logan from the event...

Three Months, Lots of Changes

In the past almost three months since my last post, alot has happened. I guess the most significant item is the fact that my son's center, Step by Step Academy will be closing. This is very disheartening. Logan was doing SO well there. One more year, and he could be put into a mainstream school and interact with other children his age that were normal, and he could have some sense of normalcy, as much as he could. However, Gov. Strickland and his appointed staff of yes men (and women) saw differently. Strickland didn't like the fact that the school was succeeding at it's job, which is trying to recover autistic children and turn them into future taxpayers, (which we all know that's what they view children as), as well as doctors, news anchors, scientists and other professions. Never mind that. It's all about the here and now. He wants that money for one of his hair-brained "education" schemes.

Now, we have no idea what we are going to do to get Logan the therapy he needs. ODJFS and OMRDD were supposed to get things lined up for us if/when Step by Step was closed or reduced. We had a care coordination meeting with ODJFS as well as the Autism Society of Ohio's Vice President Charlie Flowers come to our house. We were told that we were to basically do what ODJFS was supposed to do. Nothing like losing a month of time to find funding and places to take Logan due to a lobbyists idiocy.

Melissa has been working her tail off trying to get services for Logan. She's working the phones to try and get him respite services, maybe another ABA therapy service, anything that will help us help him achieve the goal of getting him into a mainstream school.

Logan has also been receiving in-home as well. It works very well and I'm proud of all of his progress. The BT's that come here are awesome, and work very well with him. They always remark how well he does, and how much they love working with him. I guess we did something right in raising him.


I'm very proud of him, and I'll always be there to help him, as well as all my daughters, in dealing with his autism in a positive way. It's tough at times, but I know in my heart that we will make it through this tough time. This is a very stressful time for Melissa and I. The not knowing what will happen is very scary, but I'm confident that we'll make it through.

Alot of goings on

What we have been going through over the past month or so. Where to begin.

ODJFS has been trying to shut down Step by Step. They have been attempting this for the past year or so. They are using the fact that they will be out of compliance if they don't change certain ways that the services are paid for. They claim that the Federal Gov't will fine the state. What is interesting is that the Federal Gov't has stated that the states shouldn't do anything until they come up with mandates regarding Autism treatment. Apparently someone at ODJFS (Ohio Department of Jobs and Family Services) thinks they know exactly what the Federal Gov't is going to do, and assumes that we will be out of compliance. WRONG!!!!!

If the Federal Gov't says wait..you wait. Don't make assumptions. I have not heard of any other centers being threatened by this move. However, I don't think that ODJFS is going to stop at Step by Step. They will try to save the state some money on the backs of the children that need the help the most. It seems like Gov. Strickland cares about the kids, but just won't give them the money they need to help themselves. ODJFS is a red tape machine. They have attempted to trip up parents of children who are attending Step by Step by trying to get us to say certain things. Why do they INSIST on trying to hurt our children by taking away the services they need to help themselves. One of the commissioners of ODJFS even suggested that we insitutionalize our children. If this is a supposed caring organization, that wouldn't even be considered by them. They want to sweep the problem under the rug and let our sons and daughters not make anything of themselves.

I'm asking anyone who reads this to contact their state and federal senators and representatives to help stop this rule change from taking effect. ODJFS and Gov. Strickland have said they are trying to find alternatives, but those alternatives won't help them, or we won't be able to access them either due to the waiting list, or the cost of the service being prohibitive.

Autism Walk and other things.

One thing that seems to bring people together are the walks for Autism. Cleveland, Ohio just had a walk two weekends ago, and it was expected to draw 4,000 walkers to Jacobs Field. The actual attendance was 6500. The anticipated goal for money to be raised was $250,000. They raised (as of the e-mail I received shortly after) over $537,000, with money still coming in. That is a great thing to hear.

As far as Logan's progress, he isn't doing all that bad. He's been moved to what they call the Garden Patch, which is a group setting with other children. He seems happy with it. He seems to be progressing well on the social aspects of everything.

However, as I believe I've expressed before, I'm concerned about his repetitive motions. They are starting to become more frequent. We've spoken to the school, and they are watching it to see what it is, be it a imitation of what he sees, or something else that may need some extra attention.


I do want to turn some attention to the recent Supreme Court case of the New York schools v Tom F. It seems that the New York City schools want to curtail a parents ability to change IEP's (Individualized Education Plan), stating that the parent needs to "try out" what the school recommends before they can change or take them out to put them in a specialized school for Autism. This reeks of politics, in my opinion. First, the schools get funding based on enrollment. Secondly, (and this again is my opinion), they would use what triumphs they made with any special needs children to obtain that funding as well. They (and I'm referring to most public school systems in metropolitan areas) don't really have the resources and staff to properly educate each individual child. And when it comes to children with autism, it gets even more dicey. IEP's for children with autism need to be tailored to each individual child, hence the word INDIVIDUAL in the name. They need one on one with a trained therapist to help them with life skills. Most school systems are stretched thin for their regular student bodies. How can they say they should have the first right to tell parents what is best for their child with autism? The parent should have the final say, in my opinion. No bureaucrat should be anywhere near that decision.

I'd like to hear other's opinions on this matter. Feel free to contact me at gambit624@gmail.com

Oprah's Autism Show

I would be the last person to ever sit down and watch an episode of Oprah. While I do commend her for her success (which she does deserve), I'm not a fan. However, yesterday, she did a show on Autism. But not a normal show about children with Autism. She had two guests on her show to discuss Autism. The main guest was Jenny McCarthy. The blond model and actress. The girl who is in love with Jim Carrey. She wrote a book about her son Evan's autism and how she has helped him deal with it, and make great strides forward. Also, Holly Robinson Pete, who was an actress on 21 Jump Street (for those younger than 25, Google it), and married to college and pro football athlete Rodney Peete. She has a 10 year old son who has Autism. She recently "came out" about her son's autism. Her son was diagnosed in 1999. It's sad that she had to "come out", but unfortunately, it's a reflection on our society's view at the time on this affliction.

Jenny McCarthy seems to very knowledgeable about autism. She did what most parent do to initially learn about this affliction. She went to the internet. Evan was diagnosed when he was 3 years old. He is 5 now.She used many resources at her disposal to learn about it. She took the view that his diet was holding him back from being the Evan she knew he could be. She put him on a Gluten-free diet. She said within 2 weeks, she noticed a big difference in him. He was using sentences. Currently, from what Ms. McCarthy stated, he is doing well.

During the show, she did talk about her book. She mentioned her reaction to the diagnosis, how she dealt with it, and the things she tried. She also talks about the breakdown of the marriage, which seemed to be caused by her son's autism. I'm not blaming the autism in any way, shape or form. Having a child with autism does strain a marriage, if only one person shoulders the load. Both partners have to be strong, if anything for the child's sake.

One thing that stuck with me about this show was that both Ms. McCarthy and Mrs. Peete said that there isn't one magic "cure-all" bullet that will help every child with Autism. What worked for Evan, may not work for your child, if they are affected. To me, that was a great thing to say. Each child with autism has to be approached differently. However, to add to what they say, the only consistent all children with Autism need, is love and support. but that should be a given.

One other item that they mentioned on the show was what to say. If you noticed, I have been saying a child with Autism, or children with Autism. No matter what, it should be the child first, autism second. It's a small thing to ask, but, to me and many other parents, the child should ALWAYS be first.

I just want to thank Oprah for letting Ms. McCarthy and Mrs. Peete share their stories. She treated them with dignity, and didn't try to, as I call it, glamorize autism.

If you want more information on Jenny's book entitled "Louder Than Words: A Mother's Journey in Healing Autism", please click on this link to Amazon.coms listing of her book. While I may or may not purchase it, it's good to see a perspective on Autism, and also shows that it can affect anyone in any socialecomonic status.

Update

What amazes me the most about Logan is his carefree attitude. I envy that. I wish I could see the world like he does at time. Obviously for one reason to understand how he sees the world and therefore understand him. But more importantly, just to be carefree. Not worry about bills or how he's progressing in school or when his next breakdown is going to occur. That is one of the blessings of having Logan is, is that he teaches me that it does help to be care free. Enjoy life.

He's progressing well in school. All of the behavioral techs love him. Obviously there are some items he needs to get better at. He has a tendency to repeatedly shake his hands, which I am concerned about. Also, he's not eating his lunch at school for some reason. This has become more and more common as of late. We don't really have a reason as to why. But he seems to be doing well in some of the more academic items he's working on. I'm just glad that's the easy part.

I got posed an interesting question last week. Someone asked me how I felt about Autism being represented by the puzzle. Up until that point, I never even gave it a second thought. There are some that feel the puzzle piece is insulting. From what I was told, (and this was from a co-worker who worked on a project at his school), they felt that the puzzle represented something that would never be completed.

Honestly, autism may never be truly cured, as we see it. It's such a wide ranging affliction that we may never truly cure it, but be better able to teach those affected with autism (no matter the severity)the skills needed to succeed in life. I feel that the puzzle piece is a good way to bring attention to Autism. The trick is, helping people understand that when they have a breakdown in a mall or some other public place. That, to me, is more important than how it is represented.

10tv never posted the video online (as of last week, when I stopped looking). I DVR'd it, and copied it to a DVD. Of course, when I re-watched it, I noticed they did a close up of his feet when he was doing a puzzle, and of course there were dirty. Ahhh... I guess fame comes with a price.

Logan on TV

Logan was on TV today. Channel 10 WBNS did a story on Step by Step Academy, as well as a family with an autistic child. When they showed some of the things they do at the school, Logan was one of the students they showed on TV. From what we've been told, he was really good for the taping, and behaved himself. I watched the story at work with a couple of people, and I was proud. I'm very proud of him and the progress he has made.

If I can get the link to a video of it on the WBNS TV's website, I'll post it here.