Our Family’s Journey With Autism and Our Cry for Help
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 exhorbant, 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.
27 comments:
My heart goes out to you and your little boy. My own son is now eighteen. It gets easier with the years but the heartache never really goes away completely and the fear of what will happen when you are gone from this planet is what keeps most parents like us awake at night. ABA is certainly a proven therapy with a good track record. In my son's case, we took more of a floor time approach but, truthfully, I think this was only possible because he was already very verbal. For him, it was getting him to interact appropriately that was, and still is, the issue. On a hugely positive note, we recently started him on a very small dose of Zoloft - truly miraculous results. I make no claims that this will work for every child with autism, or indeed for any child but mine, but I can tell you that it was hugely beneficial for mine. Also, don't get too bent out of shape about "the window". Our guys develop differently than other kids. We were told our son would never write and that we were wasting our time with OT that focused on learning to make letters. Well, he learned to write at age 12. He won't be writing War and Peace longhand, but he can certainly fill out a form and sign his name when necessary. I wish you all the best.
Thanks for the comments "Irish Eyes". The verbal part is what is really worrying us at this point. He is 4 1/2 now and no words.
We have faith that anything is possible so we are not willing to give up!
It really bothers me that insurance companies, and the state for that matter, are looking to save some money in the short term, not thinking that without help many of these children will end up in VERY expensive state care later.
Thanks for all of the well wishes!
PS, I see that you are originally from the West of Ireland. I am a huge fan of Ireland and the Irish. I have spent a lot of time there, mostly in the north in the South Armagh, Jonesborough area, but I have been down the West coast as well.
I was last in Ireland back in 2001 in Belfast, Carrickfergus and Armagh.
As Salaam Alaikum Abu and Umm Sinan,
May Allah shower his blessings and healing upon your family and especially the children.
I am really sorry to hear about your children, Inshallah ta’ala i wish the best healing for them.
Yes treatment is important, also prayer too, you may wish to recite the Musa (Mosses Alaihi salaam’s) prayer as in the Quraan (Suraah Taha 25-28):
“rabbi ishrah lee sadree. Wayassir lee amree. Waohlul AAuqdatan min lisanee. Yafqahoo qawlee”
“”O my Lord! Open for me my chest. “And ease my task for me; “And make loose the knot (the defect) from my tongue, “That they understand my speech”
Inshallah things will be fine have courage. As a matter of fact i must tell you Autistic children when they are cured exhibit higher IQ and Cognitive Skills.
assalamualaikum
i have a cousin who is 5 and he cant talk either. he says a few words (well they dont sound like proper words) and that's about it. he has some congenital ear problem. he goes for speech therapy.
i'll keep your son in my prayers inshaAllah. may Allah bestow you and manal w/ strength and patience and grant little sinan a speedy recovery, ameen.
Yes, been in the US for more than 20 years but moving to KSA in about 2 weeks or so. A big adventure for us and a mammoth change for our son. We are trying to maintain familiarity for him by bringing all of his toys and DVDs etc.
I am glad you enjoyed Ireland. Next time you go there, visit Galway. It's the best for Irish music - people visit for a weekend and are still there twenty years later, it's that kind of place.
I think I signed off with my blogspot id - I actually have a blog that I update on wordpress. (I have been trying to decide which one to go with.)
Anyway, best of luck with Sinan. The best advice I ever got was from a speech therapist who also had a child - a yound adult when I met her - with disabilities. She told me that there's more than one way to skin a cat - meaning what works for one might not work for another but that doesn't mean that there's isn't something that will work. My husband and I made a decision at the beginning of our autism journy that we were only going to pursue therapies that were proven to help. We had limited resources and we needed to use them wisely. So, we never did "secretin" or "holding therapy" or "auditory integration". We did speech, OT and we worked with a psychologist. They have become like old friends - we, as much as our son, will be sad to say goodbye to them. We never did full ABA because we really didn't have to - we did a sort of modified version that was tailored to Noel.
Your little guy is lucky - he has two parents who, not only love and adore him, but who are willing to do whatever it takes to help him.
Assalamualaikum bro,
I pray Allah helps you and your family through everything.
abu sinan,
what if i send through western union or something ???
if yes then can u please provide me with the details asap..
May Allah help you and your child
As Salaamu Alaikum Dear Abu Sinan:
Thank you so much for sharing your family with us, and Insha Allah our Rabb will see to it that your son gets all the help he needs. I sent something; Insha Allah I can send more in the future.
Love and Salaams
Safiyyah
(S. E. Jihad Levine)
Thanks everyone for the prayers and support! It is an ongoing project so Insha'Allah, we get enough money to start and then maintain.
We have plans for a different website just for Sinan, Autism and out family. Videos of therapy, updates, a news letter, all planned.
Someone mentioned Western Union. I am not sure what details you need, e-mail me at abusinan@maktoob.com and I can give you what you need. All help is welcomed and appreciated.
May Allah give everyone 1,000 fold back in blessings and gifts.
Paypal is currently making life hard for me. I originally set up the account there under Sinan's name linking to an account we set up specficially for this purpose.
It then turns out that you must be an adult to have an account so they are requesting that I send them copies of my SSN card, drivers license, utility bills ro prove who I am and current address.
Funds can still be donated, they just cannot be released to us until all of this is done to their statisfaction. That isnt a big deal for us, we had no plans on doing that until we had enough to cover the initial assessment of Sinan and the first month therapy which is due together.
We have got about 1/4 of that now.....so we might have started slow but we are on our way.
Thanks again everyone and thanks for spreading the word to other blogs, forums and web sites.
Had you kept your Anti-Islamic/ Anti Middle Eastern attitude your problems would have been solved.
Nevertheless you children deserve better and they have my prayers. Let them be cured of their illness and lead a better life.
I have sent some money as well.
Had you kept your Anti-Islamic/ Anti Middle Eastern attitude your problems would have been solved as you wrote in americanbedu.com
Nevertheless you children deserve better and they have my prayers. Let them be cured of their illness and lead a better life.
I have sent some money as well.
@Abu Mazen:
You must have kept this comment of yours out of this post, this is a moment of crisis for Abu sinan and his family.
It is not good for you to rake up Abu Sinan's attitude here though we may not agree to him.
Don't be a loose canon firing off aimlessly.
And i condemn this in the strongest words, sorry but its a fact.
(Angry)
@abu mazen:
You did sadaqa great, Allah will reward you for this, but don't be a freak boasting and taking your pot shots on some one.
The Prophet (PBUH) when you give charity by right hand let not your left hand know about it, remember!!!
Like Irish Eyes, I have a family member who has been living with autism for a long time. My heart breaks anew each time I hear of a family trying to cope with this. But I do, I hope, have some encouraging words. My brother was born 10 years after myself, he is 45 this year. At the time there was not much known about autism. I think that my greatest pain was not actually my brother's autism, it was the pain my mother felt and the damage done to our family when the professionals at the time attributed all of my brother's problems to my mother. My brother himself was, is, someone very much loved by my family. He did not speak until he was 5. And even then much of what he said was to repeat what others said to him. He was always fascinated by how things worked though, and would collect household objects to build things like models of bridges to illustrate the difference between cantilever and suspension. He had some rough times in high school, and yet went on to college as a special student eventually graduating top in his class with an associate's degree in chemical engineering. He made a small group of friends in college by writing code to help them complete computer class assignments. He held a job as a lab tech for years, though eventually he lost it because it has always been obvious that he is 'odd', his voice has always sounded strange, wrongly pitched and with inflections oddly placed. I think he just couldn't do the office politics part. None of that prevented him from deciding one day that he wanted to attend the summer Olympics. He made all the arrangements himself, announced the trip the day before he left, and returning with photos. He also became a founder and sat on the board of directors of an antique radio museum. He still enjoys finding old radios, sourcing the old tubes to repair them, and selling them at a profit if he doesn't want to keep them for his collection. As with Irish Eyes, my parent's greatest concern was what would happen to thier son after they were no longer on earth to protect him. So they arranged that any estate (basically a modest house) they had be put into a trust for my brother.
You are certainly correct that psychological/psychiatric services are not adequately addressed by our insurance policies. When I had to provide some of those services for my own child I was lucky enough that I could use state law to force the insurance company to make some payments. (The insurance company refused to renew the policy my employer purchased for me the following year.) However it took me years to pay off a bank loan that I had to arrange to cover my share of the deductable as my job paid just a little too much to allow me to qualify for public help on that. Another family that I was acquainted with at the time had to liquidate a family business to pay for their child's treatment. These experiences go far in making me a strong and vocal supporter of the 'public option' in today's healthcare reform debate.
I will keep Sinan and all of your family in my prayers.
Ah, I almost forgot some practical ideas.. Have you checked with your local school board and state education departments? They may be under a mandate to provide an appropriate education to all children, regardless of disability. If this is the case, and treatment is required in order to supply that education, you may be able to get them to fund some of it, or supply a program. I lived in the State of Connecticut where every child's right to an appropriate education was written into the state constitution. It didn't supply everything, but it was a powerful tool. I used those rights a number of times to assure my own child's program was appropriate, and there were times that I challenged his placement. I always did it in the spirit of teamwork, politely. But I did know my legal rights and on one occasion when I was concerned I went so far as to find an attorney who offered to work 'pro bono' to help me bring a legal challenge if I felt I could not get appropriate placement for my child. A few years after that the school system asked all the parents to sign a waiver giving up the broad rights the state allowed them. Many parents, afraid of loosing services, signed that waiver. When I failed to return the signed waiver the teacher called, I explained cordially that I felt my child needed all the rights and I could not in good consience sign them away. The teacher, as it turned out, was very sympathetic, agreed I was right. There were no negative repurcussions. Forgive me, because my telling these stories is the sloppy way of saying.. get in touch with paren's support or any other advocacy group or agency you can find. See if you can find a sympathetic attorney who understands the law as it pertains to a child's rights to an education. There may be more resources available to you than you think if you search and push for them.
I hope all goes well for you guys.
A relative of mine in Saudi has a son who they think is autistic, he is not two yet, and I know you cannot diagnose it at that age, but that was the initial prognosis. They did a few tests and are asking for more, enough to make it seem like he is a guinea pig for their experiments... and they say still won't be able after all those tests to do anything. The tests cost money as you've stated, and insurance in Saudi is new, and treatment and tests are still not up to any good standard.
My prayers and well wishes to your family... it is not easy, finances and all, but if it only finances, I pray you will be able to provide him with the best.
Take Care
Paypal seems to be giving some kind of error saying that the account cannot accept money. I'll try again in a few days inshaaAllaah, hope you can get that fixed.
I didn't know you were updating here, so I'm very late to see this post. I'm so sorry that you're having to deal with this financial problem. Sinan is a beautiful child!
As Salaam Alaikum,
I sent you comments on another blog, but another friend of mine sent me the link to your story here, so for the sake of Allah I am trying one more time to convince you to consider trying vitamin therapy with your child. At the very least it can make the other therapies you choose more effective. We just had a couple from Algeria with us and their son was pre verbal and after only 2 months he was labeling, repeating and even using two words together for requesting. I'd be happy to help you get started with your son. I can't mention everything or this comment would be entirely to long, but some of the things we did which made huge differences for us were: Gluten free dairy free diet (really opened up my son's awareness), zinc helped more, good quality fish oil, high dose B6 and magnesium, and a great probiotic were all key for us. Just check out www.autism.com I'd be happy to offer some advise or resources if your intersted.
My duas are with your family brother. Fi Amaan Illah
Brother, I forgot one piece of info in my post. The Algerian couple I mentioned, their son was 8 years old. They had been told if their child didn't talk before 6 he would become closed and never speak. Don't let anyone limit your child. I am not a huge fan of ABA but if you have your heart set on it, there is a parent training at Touchpoint in St Louis, Mo. I don't know if you can reasonably travel to US but it is an intensive 3 week training that will give you the skills needed to do ABA for your child. In the long run it may be more cost effective than trying to pay someone else. www.touchpointautism.org/
Can Abu Mazen's comment be deleted? He is not speaking on our behalf (Muslim/Arabs)..SubhanAllah, Abu Mazen, our religions stresses on nothing more then having good manners especially at times like this.
Abu Sinan, we pray that Allah swt makes this trial a source of purification for yourself and your family. We will donate and will spread the word inshaAllah.
@Shabana,
I am not big on deleting stuff. Better everything is open. If the brother had issues with me he could have brought his advice/nase7a in an e-mail.
We'd appreciate any help, in any form, that comes our way!
Jazakallah Khair
Assalamu Alaikum,
QadrAllah. I'm glad to see Sinan has had some therapy. I used to live in Alexandria (so right outside of DC) with my aunt; among her kids is my cousin who is autistic.
I wanted to second what Mary said above. My cousin's not verbal, but has been constantly in therapy since he was very young. He signs; and he gets some services through Fairfax County's school district.
I wanted to offer to at least ask my aunt what services she's been getting, and how, since my cousin is now 15 (! OMG! I remember when he was a newborn) and has made some good strides in behavior. I do remember my aunt giving him fish oil when I lived there, as well as other vitamins. But because it's not the easiest subject in the world, I wouldn't want to bring it up unless you thought her experience could be helpful.
Please let me know; leave a comment on my blog or email the address in blogspot account.
May Allah ease any burdens on your family, and grant the means to open doors for Sinan's therapy, and bless you with abundance in all good things, amin.
TT
Salaam Alaikum,
I am coming into this a little late but have written about my grandson who has Asperger's Syndrome. I don't know if you are aware that the government is required to provide special education for Sinan, including pre-school. You may be able to get a variance to put him in a good public school that has an ASD program like the one my grandson attends in the Eastern part of Virginia. Please check with your local school district to see what can be arranged.
Also as Irisheyes has stated some medications help ASD kids quite a bit. My Zechariah takes Zoloft and Focalin and has made remarkable progress in school since on that combination.
You are in my prayers --
PM
PS: IGNORE the idiotic Abu Mazens of the world.
As salaamu 'alaykum,
As a Speech-Language Pathologist whose worked with many children with Autism, I can't emphasize the importance of speech therapy. The behavioral challenges which come with the Autism diagnosis, are due to the inability to not only communicate wants/needs, but also to understand the world around you. Language is a huge part of that.InshaAllah if you're unable to get speech through insurance right now, this service should be provided once Sinan starts school. May Allah make it easy (aameen).
Hi
i just read about your situation on Muse's blog. i dontated what i could...and i really wish your son gets the best help. i pray that our insurace system gets better so your son can get the care he needs without such strees on your finances!
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