A family’s journey with Autism, and a cry for help!

14 10 2009

The family is Abu and Umm Sinan, they are a beautiful loving family. They have always bravely faced the many and very hard problems life has thrown at them. Their faith and love carried them through. If that wasn’t enough they are now faced with a problem they cannot solve without help.

We are not on the earth just to care for ourself. I think we are all responsible for each other, I believe we are all family and we should support each other when neseccary.

Please,help Sinan, give him a chance to live a good independent life.

Update:

I want to assure everybody I know this family, since a long time. This is a genuine family, in a genuine predicament.

In the current debate swirling around healthcare, health insurance and reform, the personal element is clearly missing. We’ve heard all of this talk about pre-existing conditions, people dropped when they get sick, caps and limits, but no one is talking about the personal side of the subject. What about the families struggling to get care or the family members who cannot get the care they need because insurance doesn’t cover it and the costs are just too high for any but the very rich to afford?

I want to present my family’s story to add that missing personal element. I am the father of a four year old child with Autism. We knew something was wrong when he turned two and still wasn’t talking so we had him evaluated and got an initial diagnosis of PDD (Pervasive Developmental Delay). This came from a county worker who was really unable to provide an official medical diagnosis but it set the stage for us to get very limited services through the county. These services consisted of two forty minute therapy sessions each week.

We took our little Sinan to the Children’s National Medical Center here in Washington DC. This first experience taught us a lot of what to expect in the future. Due to the shortage of professionals to treat children with Autism it took us six months to get an appointment. Once we did get the appointment for an initial evaluation, it was done over two separate sessions at the Children’s National Medical Center. Limits in the number of people able to give care are a huge issue, so are the costs.. We eventually got a diagnosis for Sinan of Autism with PDD.

Needless to say even with insurance, the out-of-pocket costs for getting the necessary tests are highly expensive. A series of blood tests ordered for Sinan cost more than $4,000. Every specialist you see has to evaluate the child and these charges run around $1,000 each time as well. We were then referred to a neurologist who specializes with autistic children. We were directed to have a set of blood tests performed to rule out any other possible issues and then given an appointment for a MRI to be administered.

Our out-of-pocket costs just keep building and building. The real kicker is that the only therapy shown to have a positive impact on kids with Autism is called “ABA” or Applied Behavior Analysis. The irony is that there is a glimmer of hope for austistic children with ABA therapy yet the majoriy of insurance companies will not cover this treatment. There are a few states which mandate ABA coverage by law, but not many and unfortunately our state is among those which does not.

I have never asked anyone for help before. My pride normally would keep me from doing so, but when it comes to our little boy with the big smile whom we love dearly, as a parent you have to throw your pride out the window and do what is best for your children. Sinan turned 4 in June and still isn’t talking. It puts me in tears to know I cannot give him what he needs. Any parent out there knows what I mean.

Our insurance doesn’t cover the one therapy that is almost universally recognized to help kids with special needs. We had an IEP(Individualized Education program) meeting with our son’s pre-school teacher and she was telling us she feels Sinan is pretty much on the severe side of the spectrum when it comes to Autism. We don’t think he is, but without him being verbal there is no real way to tell.

This is why we are turning to you, the public, to assist us in giving our son what he needs to help him live a fruitful and productive life. When you look at the costs it is clear that unless you are securely financially stable it is outside your means. One local service, called the “Autism Learning Center” charges $2,400 to $3,100 a month, this giving the child at least three hours of ABA therapy a day. That is a price that the majority of Americans can not afford even with health insurance coverage.

Even though I work two jobs, sometimes 70 hours a week, we have been unable to afford the monthly costs of the Autism Learning Center. My wife is unable to work because the children are too young to be in a full day school program and day care costs are exorbitant, especially in our area, never mind for children with special needs. We haven’t been able to cover past medical bills for Sinan, let alone provide him the therapy he needs to unlock the little guy we know is in there.

We are doing everything we can to get Sinan what he needs but we’ll never be able to cover these sorts of costs. This is where we put our pride aside and are asking for help to get Sinan ABA therapy. It is an ongoing process and he might need it for years, but the years before age 6 are crucial and if he is ever going to be able to talk and function he needs ABA therapy now.

I ask everyone to give what they can. Some people, who are blessed with a lot, can give a lot, others like ourselves who might not have a lot or have a lot on their plates can only give a little. Everything will help to provide Sinan the therapy he deserves.

If you are able to we sincerely ask for your help. If we get enough to start him on therapy we will record some of the sessions and add them here for you to see what your help is doing for him. We plan for the blog to kind of become a timeline, a history of Sinan’s fight against Autism and the progress he makes, along with issues that we have as a family.

We have included a “Pay Pal” button for you to contribute to Sinan’s therapy costs. Without help from donors, we do not see how we can afford Sinan’s therapy while the window of hope remains open to treat him during these most critical years.

Thank you so much for your help.

Here is a video of Sinan at his pre-school. Like many kids with Autism he has issues food and feeding. One of many issues that ABA therapy would help address.


Advertisements

Actions

Information

One response

16 10 2009
aerinndis

This is a very sad situation.
I hope you will be successful in collecting lots of money!

It is interesting you know the family personally. Because there are scams about on the internet. It is good you added this information.
He is a precious boy, and deserves a chance!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s




%d bloggers like this: