Abu and Umm Sinan have been regular visitors to American Bedu since its inception. We have also become known to one another and I consider them friends. They are a bicultural muslim couple. Abu is American and Umm is Saudi. As I learned more about the challenges they have been facing as a family I wish to sensitize other visitors of American Bedu about autism and the struggle it can present to a family on all levels. I wish all the best for this beautiful family and sincerely hope that Sinan can receive the treatment he requires. And I further hope that this post also helps better inform viewers from Saudi Arabia where still some families choose to keep a child with autism isolated rather than reach out and investigate treatment and care. Autism has gained additional exposure in Saudi Arabia but as we all well know, a picture is worth a thousand words. The video at the end of this post hits home to any parent and caring individual who never wants to see a child short-changed for needed care.
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.
If you wish to assist please click this link 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.
Filed under: America, Charity, culture, friendship, Health, Interview, Saudi Arabia, Saudi culture, Saudi customs, Saudi education, Saudi Living, Uncategorized Tagged: | America, culture, culture shock, customs, home, KSA, religion, Saudi, Saudi Arabia, Saudi culture, Saudi customs
[...] Read the original: Our Family’s Journey with Autism and Our Cry for Help! [...]
Abu and Um Sinan, this must be a very difficult cross for both of you. On line, I found the following site:
http://rsaffran.tripod.com/aba.html
No one will love Sinan or be with him as much as you will. Could you possibly find others that also have autistic children and start a small ‘day-care’ in your own home?. You could have each mom help take care the kids so that the moms/dads could get out, take classes, volunteer or work at one of the centers you mentioned to learn the newest techniques ‘hands on’ training for autistic children to share with the other parents. As each child is unique, perhaps another parent that has dealt with their own child might find a better way to get your child to respond to them. I hope that you find the support you need, but in case you don’t, I’m just giving you a suggestion that I know other parents with children with disabilities use at times.
I hope that you find the light inside Sinan. He is a beautiful little boy.
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.
To others who would jump on me for saying that prayer, i am not saying just pray and do nothing, also supplement the treatment with prayer too, THATS IT.
Abu Abdullah,
Of course we should all pray for the very best in all areas for little Sinan as well as his family. The power of prayer…especially when done by groups of people for a common purpose has often overcome many problems…and in some cases even cured some from their illnesses.
Very well said.
My prayers and best wishes for Abu Sinan’s son and for the whole family welfare.
@abu sinan,
A friends granddaughter had autisim and her daughter took a certificate course in ABA from chicago school of psych, it’s a 8month program and could be done mostly long distance with help from your local hosp i think. She later on went to do her masters and higher in the same field.
Could you / your spouse at this time be able to do this, this could help your little one and also others later. Just a suggestion. I know you want the expert care but this could help in a small way .
Hope you are able to get the treatment needed and unlock Sinan’s potential
Abu Abdullah, writing down some prayers is very fine indeed, but are you planning to do something for real? Like sending some money?
Because this is a cry for actual help, not prayers. So besides prayers I will send money and also put it on my own blog.
Abu and umm Sinan, you have a lovely boy and I do hope we will all manage to get him the therapy he needs.
Radha, brilliant idea!
Oh, my goodness. I am in middleof opening up a bank account here in Istanbul as I just got my permit, so at the moment, it wuld be difficult.
Abu Sinan,
I worked with Austic children in the States and I have many stories of many strides the students made and how they exceeded the expectations of many in the field. I do have hope for your son, and remember, Austistic children are very bright, but it like a computer without the mouse or keyboard. In other words, they want to comminicate but get stuck. I would give more technical terms but I do not want to take a lot on this blog.
There was a movie on Lifetime channel called Miracle Run…I think it will give you some hope too. I will keep my eye on this specific blog though and see where my fiances land. I too have a lot medical costs due to rare pre-existing medical condition which is legally bound on me too. The cost for me is very high.
My deepest prayers for the family and son’s progress.
What a video and what a beautiful child. I was laughing when he finally gave in and ate like 7 bites in a row, really fast….anything for the candy, so much like any other child! Loved it. Thanks for sharing this Abu and Umm Sinan. You guys are obviously wonderful, devoted parents and with that, there is no way Sinan is going to lose.
I will link this on my blog and help out any way that I can. All my best to you and your family!
I sent an email directly to abusinan but I think I will post here as well, if there are others out there like him. My son is also autistic. He was diagnosed with low functioning autism. He was nonverbal at 2 as well. One thing that we did which made all the difference is vitamin supplement protocols. They are called DAN! protocol. I now have helped some families understand and implement these with their children. Many families have seen their children recovered. There is hope for our children to live normal lives drug free. My husband and I hope one day to move overseas and help the children in other countries, Insha’allah. http://www.arcautism.com
@Radha and Aafke:
Not every body boast about their contributions like you do.
And thats a nice comment tell that to the devil when you meet him.
Now this is sad moment for us, keep your useless bickering to yourself out side this post and lets look at the issue here.
My post didn’t show up? so I am testing
Ok so I did something wrong the first time. I also have an Autistic son. Perhaps I can help we are doing vitamin therapies and slow and extremely safe Chelation. He is a different boy now, very capable and expressive. I have helped some parents with this approach and hope one day to move overseas and help facilitate for others the blessing Allah has granted to us. Many children are recovering with this method. You can contact me through my website if you want info, links, or want me to help. May Allah bless your child and grant him recovery and for all the Muslims.
@abu abdullah,
My comment was directed at abu sinan, just a suggestion, he’s welcome to take it or leave it, it’s just a plan B for him , I hope he gets the necessary funds and his boy recovers.
what are you talking about ?
@radha, sorry it was confusion i didn’t mean it to you only aafke
@ AbuAbdullah, Aafka is right!
I distrust people who come out all pious and religious. Usually that’s all they do. So I suppose that was in her thoughts.
The super pious will send them a prayerbook!
And think they did their duty!
I am very sorry, what a sweet boy!
And real help should be given. It is such hope that he will improve!
Won’t the Kingdom of Saudi Arabia cover the healthcare costs? The child would be a Saudi citizen, right?
On another note, I am puzzled that in the video he appears to be rewarded with candy like M&M’s. I thought that junk food and candy, particularly sugar and artificial colors/sweeteners, were considered very bad for children, possibly contributing to behavioral and neurological problems. Diet can play a big in controlling or provoking seizures, for example.
@Barbara,
Here is a very sensitive subject…. children who have a Saudi father are viewed as Saudi citizens but when the mother is Saudi and the father is a different nationality the children usually are not viewed as Saudi nationals.
Abu or Umm Sinan would have to tell us just what kind of candy he received. I know they are such conscientious parents.
When you are dealing with a youngster with autism, it is all about eliciting an appropriate response. If it takes M&M’s to elicit that response, that’s what you darn well do. A half dozen will certainly not ruin a child’s diet and the reward was enough to get Sinan to eat the apple sauce. As far as I am aware, the research does not support the notion that sugar provokes hyperactive behavior in children.
I do wish and pray for this child to get all the support and well being for the family.
Aerinndis
It was personal message to Abu Sinan who is also a muslim and had no issues with what i sent i guess, and i did what i need to do.
If we discuss prayer, treatment and help together, whats your problem. As i told earlier if you want to discuss this offensive PRAYER issue lets take it to the debate page, please help Abu Sinan by maintaining the right tempo in this post.
@Carol,
The “reward” or “reinforcer” in therapy talk, given to Sinan here is called “Yogos” and are actually made from yogurt so are tasty and still good for you. Sinan loves them!
“Irisheyesksa” is right. Almost anything that motivates a child with Autism is used, it might be candy, it might be certain toys or even bubbles.
I appreciate the help we have gotten so far, but I am sad to say it doesnt even cover 1/3 of a month of therapy. It is interesting when you see people asking for help to pay $20,000 in credit card bills get it paid off in a month, yet therapy for a child who needs it to become a functioning citizen rates so low.
Insha’Allah things get better.
I know therapy is important and ABA is touted as the “Only” therapy. I’ve been there done that. Our children are rigid and ABA promotes rigidity and can in fact increase Autistic traits. While this works to get them integrated in a classroom setting it does little else. It does not prepare them for life, job, friends, family, a meaningful place in society. While I am %100 for biomedical therapy for our children (this has a physical cause it is not only a brain disease), if you want a good therapy you should check out http://www.icdl.com/dirFloortime/overview/index.shtml or http://www.rdiconnect.com/pages/Our-Programs.aspx along with sensory integration. None of this is inexpensive, but it is less than ABA with more benefit.
I just read an article that new research indicates 1 in 100 children have autism now. They do not believe it has anything to do with improved diagnosing skills.
Therefore, it is imperative that the US gov’t begin to cover this with insurance and skilled education/care.
Go Obama!!
I have no idea what the stats are for KSA. I know it’s a huge problem. My brother has Down’s syndrome, and is treated in Egypt, and really never discussed. All these issues are sort of swept under the rug in Saudi. As we become more educated and understand that our moral failings/evil eye etc. do not cause these problems, I hope we will emerge from the Dark Ages in treating these people.
Although a little bit off the topic of autism, there are so many doctors, researchers and scientists who are acquiring information proving such diseases and conditions like Down’s Syndrome, Autism and certain types of cancer such as leukemia have a higher chance of being inflicted upon families where there have been repeated incidences of families marrying with families such as first and second cousins.
Carol,
It is true. I read about one group of researchers going to one tribal area in Saudi because the rate of autism is VERY high there and they have high levels of inter-family marriage which might be adding to the issue.
Autism is not easy and nothing hurts the heart more that a sick child.
My best wishes to the boy and his family.
Kactuz
if only, if only we could do something, anything, for these children. The feeling of helplessness is overwhelming. No sacrifice would be too great to help a child.
Welcome Kactuz and thank you for your empathy.
Assalamu Alaikum,
I also have a son which is diagonsied as autistic. But as you said we couldn’t afford ABA Theray, we have watched some videos of Sonrise and started doing at home and did see a great difference. We have also started some Homeo medicine and Vitamins.
This prayer will help
) Allahumma rabba an-nas, adh-hib il-ba’sa, ishfi anta ash-shafi, la shifa’a illa shifa’uk, shifa’an la yughadiru saqaman. (O Allah, O Lord of mankind, remove the affliction and send down cure and healing, for no one can cure but You; so cure in such a way that no trace of illness is left.)
Your son will be in my prayers,. There is also reseach saying 10-25% autistic children recovered. So there is hope, inshaallah once our chidlren recovered we can help others.
Salam Alaikum Hanz,
Thank you for your sharing and recommendations. We all pray that your son will see continued success and improvement.
Best Regards, Bedu
As Salaam Alaikum wa Rahmatullah,
We use many vitamins and several forms of chelation including DAN! and homeopathy, but Cutler chelation protocol is by far the best we have tried. It is very safe and we continue to see improvements in our son with every round. Homeopathy helps the body clear metals by directing the bodies natural ability, unfortunately the body has no natural mechanism by which it can remove metals from the brain. Many children have been recovered to the point they are off supplements and special diets using cutler protocol. I am a big fan of homeopathy and we use it for many things just not for chelation.
[...] American/Saudi family Abu and Umm Sinan continue to face their challenges in raising their son, Sinan, who has been diagnosed with autism in the United [...]
Videos titled, “Autistic Adult in Crisis Goes Unnoticed” and “Shocking Patient Neglect of Autistic Person” on youtube warrant immediate attention to dangers of managed care and general hospital medical mismanagement of severely autistic patients in California. What we witness here is a FAILURE to care, as in from the heart. There is little intrinsic motivation for many nurses, doctors to really HELP their patients, especially complex ones that require complex care management. So do we need healthcare reform? DO we really need to change a system, when the real problem is heart care reform? As in value, dignity and respect for persons with special needs, the elderly, sick, infirmed, disabled, blind lame? WHERE are the miracle workers of today? Where are those that go the extra mile to help patients?