Friday, March 19, 2010
It was from then that I vowed to myself and to my son that he would have a relationship with his Dad no matter what and that I would do everything to foster that relationship.
Lately, I have been feeling a disconnect between Joey and his Dad, partly because it is Spring Training and his Dad is getting ready to leave for 5 months. Then, yesterday, I was at group OT with Joey and he was having a hard time with relaxing with all the kids around him. Then, they played catch. He was the best one there. He threw straight and threw strong to an 8 year old boy. He was so happy he did so well and I could tell he was starting to feel confident and started to relax.
It dawned me that this would not have been possible without his Dad, who showed him how to throw a ball at a very young age. Even though his Dad isn't around sometimes, his instruction, guidance and love can still be present.
Tuesday, March 16, 2010
Thought I would share something from Autism News. I am glad they said in the article that most marriages won't survive this. It is so true.
Sunday, March 14, 2010
Friday, March 12, 2010
This goes in line with his speech therapist and occupational therapist, who both feel he is doing great. It also coincides (unintentionally) with the fact that his 1 year review with DDD is coming up. He can lose services at 6 (3 months after the review), or at the review itself, because he does not (and will not) have a full blown Autism diagnosis. However, the Epilepsy diagnosis should be enough to keep services. BUT, we live in the 2nd poorest state in the country and they are doing best to cut all "unnecessary spending" which always means services to the handicapped and disabled get cut first.
I am relieved that he may not need the services for 2 reasons: 1) he is progressing so much and 2) I won't have to go through the lengthy appeals process with the state.
My DDD coordinator is already busting my chops about having Joey re-evaluated, which he has in a few weeks at his 6 month check up at Melmed. He's also pissed that Joey is in general education at school and is insisting that he go to Zuni Hills next year instead of starting at Parkridge because only Zuni Hills has self-contained classrooms.
I understand that the coordinator only wants the best for Joey but doesn't he want to see progress? Putting a child, who is progressing, in a self-contained classroom, would hold him back. Those classrooms are only for the severe cases. Joey has always been a mild case and has come such a long way that most days, his Autism is barely noticeable.
So...it seems like DDD is playing both sides of the fence: he's doing well so cut his services vs. he needs to get services from the school because he's so severe. Oh wait a minute....are they just trying to make Joey the school's responsibility? Why doesn't he state focus more on cutting "real" unnecessary spending and leave the kids alone?
Wednesday, March 10, 2010
Is Autism Speaks Mis-Spending Its Money? Your Opinion Requested
Autism Speaks is by far the largest organization in the US - and one of the largest in the world - dedicated to autism-related research, funding, and related activities. They are also one of the most controversial, for a variety of reasons all of which are laid out in an Examiner.com article entitled "Why autistic people don't like Autism Speaks."
You can read the Examiner article (or search this site for my perspectives) if you want to read the history of Autism Speaks. What's new in the Examiner article, though, is a review of Autism Speaks' tax returns -- which, at least to author Marc Rosen, are shocking:
Autism Speaks has released its 2008 990 tax return form, which is the primary source of the following information regarding its finances. According to their 990, Autism Speaks has 36 employees who were compensated over $100,000 this year. The highest paid employee listed, their Chief Science Officer, Geri Dawson, was compensated $644,274. That's better than most people make in fairly good positions at Fortune 500 companies! ...
In total, they spent $17,756,876 on employee salaries, pensions/401ks, benefits, and payroll taxes. By contrast, their grants to individuals and communities totaled a paltry $66,670, not even a drop in the bucket compared to their total reported expenditures. Based on that information, it is clear that Autism Speaks does very little with their money to help autistic people and their families...
Having worked in the non-profit world all my life (mainly for major museums and universities), I have to say that I'm not a bit shocked. In fact, I'd say that executive salaries, fundraising and general operating costs for most of the non-profits I've been involved with are similarly high. I'd also mention that, in many cases, executive level pay is many times more than the pay offered to mid-level employees.
I have never, though, worked for a philanthropic foundation - and a large part of the Autism Speaks organization is all about giving away grants.
And I've never been on the staff of an organization whose focus is on supporting individuals and families coping with a particular disorder - and that really is the purpose of Autism Speaks.
Like some of you, I've attempted to contact Autism Speaks directly and never gotten any further than the media relations person. I've spoken with Geraldine Dawson who heads the organization, but only prior to her appointment.
For those of you who are familiar with Autism Speaks, or know more than I do about the inner workings of Autism Speaks-like organizations -- should we be shocked? Are these tax revelations just par for the course, or are they upsetting indications of a bigger problem?
Share your thoughts!
Tuesday, March 2, 2010
As the show progressed, I realized that was the direction they were going in. I wondered why they didn't advertise that they were going to address this topic but then realized they probably didn't want to be known as "that show about Autism."
I am so glad that a prime time show will be discussing this topic. I remember when I was preparing for my segment on Sonoran Living Live and the PR person told me not to talk about Autism or developmental delays as part of my school topic because it wasn't "that universal of a topic." Seriously?
I will post a clip for Parenthood as soon as there is one on YouTube!
Monday, March 1, 2010