When I say I am not that nice, I see the other side of this, I try to be a straight talker. I am not one to sugar coat my feelings, despite my mother's constant pleas that "you catch more flies with honey than vinegar". Personally, I find this idiom disgusting. I don't want to catch dirty, poo loving flies. After years of trying to be polite and using flattery to get my way, I found myself more often than not a meek little mouse, who was largely ignored or a volatile wreck who would blow volcanically. In other words, it wasn't in my nature, and it didn't work. If I am nothing else, I am a sincere person. If I give you a compliment, you never had to second guess my intentions, because I truly mean it. I tend to keep my mouth shut more often than not when it comes to really speaking my mind, because I am not always the most diplomatic person, and I know that. That doesn't stop me from putting my enormous size 9.5 in my mouth more often than I like, however. I have to accept who I am, and take the good with the bad, just like everyone else. My goal in this acceptance: I just try to keep that savings account positive where I am doing more good than bad, and hopefully no use of credit.
Speaking of people who are exceptionally nice, I had a recent opportunity to speak with another mother for a group of therapists here in Syracuse. The topic? What to do when you suspect autism in a child. She is the mother of 5 boys, 3 of who are on the spectrum, one has similar issues to Sophie's and there youngest is young enough that they are waiting to see what will be. When I was asked to come in and talk, I never imagined to have so many people in one room. It made me shake a bit, especially after getting their late since the back passenger door in the minivan didn't want to close so I ended up taking Mom's car.
I told the therapists that I couldn't give them the phrase that they would use to speaking with therapists about giving the bad news, that they would have to discover what they felt comfortable with for themselves. Direct, concise, the facts. I told them that they should disclose that they were not able to diagnose, and to have on hand who to refer them to for the dx. I told them giving them names of organizations in the area such as FEAT or CNY ASA. There is nothing pleasant about this experience. You will cause tears. You may shatter dreams. But you will also get people started on a journey. And the earlier the better. I have talked to parents who were deferred by professionals (pediatricians, therapists, etc.) for YEARS. One of the biggest regrets is that they did not recognize what was going on sooner, and get the child the appropriate treatment. This ends up causing serious angst and regret.
One of my projects for next year is sort of on this topic. One of the things FEAT is trying to get going is a workshop for pediatricians on early screening (and ultimately dxing) and management of children on the spectrum. I still hear stories from parents where the pediatrician pooh-poohed their concerns about their child. "He is a boy, they talk later." "He is the second born, they talk later." "He is shy" "Let's wait and see..." Many phrases so consistently heard. So sad to hear. But why? Sometimes it is because of ignorance, or because the practitioner doesn't want to evoke fear, or sometimes it is because they don't want to bother. This workshop will hopefully address ALL of these issues - why it matters, early screening tools, a protocol to handle possible cases, the evidence of early treatment making a difference, how to insurance code these items, the resources available for these children. I am really excited to work on this - and if this gets just one or two pediatricians to pay more due diligence to this issue, I will feel it was not a waste of effort. The biggest issue for this workshop - marketing of course!
We have come up with a strategy of trying to associate a CME (Continuing Medical Education) credit with the workshop. This will give doctors credit towards their requirements for professional development. This is where the hard part has been - trying to get the credit associated with the class. We have the content, the presenters, and a few venues in mind, but we are in the process of trying to get Upstate to be our sponsor for the CME credit. Not as straightforward a process as I had hoped. We will get there though.
I am hoping as an outcome of preparing for this workshop, I can learn a little more about presenting families the topic of their child possibly being on the spectrum and how to provide support during this crisis period in their family life. Not all families are alike in how they will handle this, nor what they will want to do for treatment if any. I can only refer to our experience, and I know that the denial was not as strong as some other families go through. I am hoping the professionals who do this on an almost daily basis can provide some guidance to others, such as therapists, who are on the first line of defense, and sometimes are the first to notice that a child may be on the spectrum.
Eventually, I would like to see a process written up into the Early Intervention programs on how to handle these situations. Of course, with budgetary restrictions, they may want to avoid this topic, since handling autism treatment appropriately requires a huge time alottment of services, and this is a big $$ commitment. As short sighted as this may seem, they cannot see their budgets blow up right now in a time of fiscal crisis. It could actually do damage to the program in its entirety.
The other thing I am trying to offer my expertise, OK well, not really, but at least my guidance on is the updating of the website for FEAT of CNY. There is a master programmer already involved, so I just have to butt in and tell my opinion. Finally, something I am good at. We are in the process of overhauling the whole website - to include a new Donation button
Of course, no discussion of what I am working on would be complete without the never ending mention of New York state insurance reform. 16 states have insurance reform laws - one just added this week. It's good to live in Ohio (added December 8th.)
On October 23rd, 2009, a public hearing on Autism Spectrum Disorder was held in Albany. The New York State Senate Committees on Insurance, Health, and Mental Health & Developmental Disabilities held the hearing on the role of health insurance in the treatment of autism spectrum disorders. In my free time (maniacal laughter in background), I have been watching snippets of the hours of hours of testimony. The hearing was heartbreaking in some ways. One insurance representative referred to those stakeholders of coverage as "players". SLAP Can you imagine having your child's future referred in reference to a game? Players. I was revolted. While I am sure that this woman had no intention to hurt anyone's feelings, it is very evident that she has no idea or care of what we or any other family is going through. Her care is about the bottom line.
It is so obvious what needs to be done. There is a huge public financial burden currently, paying for required services for adults with this disorder. Not only does it make sense, but there are now peer reviewed research to indicate that we can lessen the symptoms of this disorder if treated correctly, making these individuals more independent, and less expensive in the long run.
As a few of you know, I have contacted my local representatives on this issue, and I continue to urge others to do the same. Do you realize that no only is the treatment not covered - the diagnosis is not covered! Currently the US Senate is working on that one. I am hoping to meet with local representatives to discuss this issue. I urge all of you to please help me stay on our state legislators about this. I will let you know what you can do and who to contact if you are interested in helping. By all means, feel free to contact your own states representatives about the federal mandates as well.
My recommendation for insurance reform: get rid of Viagara coverage and take the savings to cover autism treatment, add to that a tax on delivery of those children born to men over the age of 40- this especially makes sense since research now shows a correlation between the age of a man and higher rates of autism. Problem solved.
And the final project of mine is of course, is getting those therapeutic hose on Mom's dear legs.
1 comment:
You amaze me at what an activist you are. It is all I can do to handle Conor and fight for him, much less all of the other kids like him. You are an incredible person, even if you're the only one who doesn't realize that.
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