September 11th 2001 :
A day the world will probably never forget due to the devastation caused by some fanatic morons. For me, as a Muslim Indian immigrant, the repercussions were clear (and it seems to get worse !). Of course, it does not help a lot if your name is Mohammed !
Exactly 4 years later :
We celebrated the birth of our 3rd child, my second son. Born in WakeMed hospital (Cary, NC), he was born a healthy child. For the parents, it was again the same amazing feeling we have ever witnessed or experienced (as was the case with our first son and daughter). Subtle indications from god of his existence and miracles i would say.
There were a lot of eiree unwanted coincidences. Born on 9/11, at the same time (8:45 am), my name was Mohammed (and i slightly resembel him too !), and i was working for a company called "American Tower" ! Some of my friends joked he should be named Osama. As a father, all i wished for him was he should grow to be a healthy boy and a good human being.
A gift from god
Its easy to raise i child. Not so bad to raise 2, but when you have 3 kids to raise (with about 2 year age differences between each), our lifestyle changed. Our schedule was based on the kids, their naptime, school, pre school, soccer, Kumon etc. Going to restaurants, movies, parties was always an adventure. What could be the probability of all 3 kids behaving at the same time ? Its as good a chance as the gas prices coming down to $1.5 a gallon !
But it was worth all these trivial sacrifices. The joy of seeing a little one grow is simply unbelievable. Their first smile, their first steps, their first words... these are the things "MasterCard" cannot buy ! Luckily there was no sibling rivalry. As the months passed by, before his first b'day he would stand by the storm door and cry saying "da da, ba ba" when i left for work. His name, when translated from Arabic meant "A gift from god"... and for us, he sure was !
But it was worth all these trivial sacrifices. The joy of seeing a little one grow is simply unbelievable. Their first smile, their first steps, their first words... these are the things "MasterCard" cannot buy ! Luckily there was no sibling rivalry. As the months passed by, before his first b'day he would stand by the storm door and cry saying "da da, ba ba" when i left for work. His name, when translated from Arabic meant "A gift from god"... and for us, he sure was !
Delays
My first son, then aged 5 was having issues at his pre school. The teachers recommended him to retain him in transition as he was not very social or vocal. We got him evaluated and the Wake County officials finally gave a recommendation that everythings allright with him. We were happy that he would go to Kindergarten in Davis Drive. Little did we realise the "politics" or "bias" that was going on in the county school system !
My son is very mild and soft spoken (a lot like me), and we found it strange that he did not like his Kindergarten teacher from day one. Very unlike him not to like anyone. He struggled in Kindergarten and that started draining our energy, stressing us out.. all kinds of tests, evaluations, and not to forget the mounting medical bills. The biggest jolt came when his teacher said he has to be retained in Kindergarten !! That sounded very absurd. I knew a few kids from the same school who were comparitively very weak, and were going to First Grade.
When we started questioning the decision, we got absurd answers, and the principal closed the matter with the final sentence "Only a miracle can see him go to first grade". My wife studies the books for parents rights, approached the supeintendent, and the "miracle" finally happen ! He was promoted to first grade. He has just completed his first grade and had absolutely no issues. Thanks to his teachers in first grade. I think they made a huge difference.
My son is very mild and soft spoken (a lot like me), and we found it strange that he did not like his Kindergarten teacher from day one. Very unlike him not to like anyone. He struggled in Kindergarten and that started draining our energy, stressing us out.. all kinds of tests, evaluations, and not to forget the mounting medical bills. The biggest jolt came when his teacher said he has to be retained in Kindergarten !! That sounded very absurd. I knew a few kids from the same school who were comparitively very weak, and were going to First Grade.
When we started questioning the decision, we got absurd answers, and the principal closed the matter with the final sentence "Only a miracle can see him go to first grade". My wife studies the books for parents rights, approached the supeintendent, and the "miracle" finally happen ! He was promoted to first grade. He has just completed his first grade and had absolutely no issues. Thanks to his teachers in first grade. I think they made a huge difference.
Whats Wrong ?
At the one year checkup with the pediatrician, we raised our concerns that our son not yet speaking a single word. She said since we are from a multi lingual background (1 know 5 languages, and so does my wife) there may be a delay. With the speech delays with our elder son, this was not a very convincing answer. Finally on April 11th 2006 (when he was 18 months old) we had a team visit us from the county to access our sons problems.
Their feedback would change our life. Their casual conclusion was
He has Autism
Their feedback would change our life. Their casual conclusion was
He has Autism
A Rude Awakening
All i knew about Autism was that it was a disorder that could have serious impact on leading a "normal" life. It took me a few weeks to reaslize what Autism really is and what a profound impact it can have on the one who has it as well as on the immediate family. I went through a denial phase. It took me a few months to realize and come to terms with the fact that my son has Autism. My own son !
Who would say he has issues. He looked so cute, so normal. How could he NOT be ok. I started reading a lot of articles online as well as books on Autism. The more i read, the more worries i had. I was stunned to know that 1 in every 150 parents go through this. That was a alarming rate, a ascary trend. Heck, that was more than a combined count of people who have been dignoised with AIDS or cancer !
Who would say he has issues. He looked so cute, so normal. How could he NOT be ok. I started reading a lot of articles online as well as books on Autism. The more i read, the more worries i had. I was stunned to know that 1 in every 150 parents go through this. That was a alarming rate, a ascary trend. Heck, that was more than a combined count of people who have been dignoised with AIDS or cancer !
Pre School
Although a little early, we enrolled him into a pre school for 2 hours, twice a week. Within a few weeks, the teacher complained that she cannot handle him as he is 'mischevious'. While most of the 2-3 year olds would sit around in a circle during story time, he would be climbing the chairs and tables. They were not special ed teachers, and for a 15:2 ratio, you cant blame the teachers either. So, our sons pre school experience lasted a few weeks only (or technically a few hours)
Wake County
The team recommended 1 hour of OT (Occupational Therapy) and 1 hour of Speech each week. So much for paying those taxes to the county... all they gave us was 2 f'ing hours every week ! A lot of experts would later recommend that our son will need full time therapy, ie 30 to 40 hours every week !
When the goals were reviewed after 6 months, he did not show any progress, rather he was falling back on his 'goals'. They 'graciously' agreed to double the hours of OT and Speech. So now he would get 2 hours of OT and 2 hours of speech every week. But we knew, the fact was those hours were not even enough for a day. And mind you, these were not free classes. Our income decides how much payment should come from us !!
When the goals were reviewed after 6 months, he did not show any progress, rather he was falling back on his 'goals'. They 'graciously' agreed to double the hours of OT and Speech. So now he would get 2 hours of OT and 2 hours of speech every week. But we knew, the fact was those hours were not even enough for a day. And mind you, these were not free classes. Our income decides how much payment should come from us !!
911
It was a bright sunny day. I took my 2 kids to Home Depot. It was time i finished extending my deck. On my way back, when i was about to take a turn into my street i saw the ambulance heading our way. I pulled up, to let them pass. I was wondering what must have happen, when a bolt of lightning seemed to pass my body. The ambulance stopped right in front of my house!
I saw the medics rush into my house. Various thought ran across my mind in those micro seconds. All i had wished was everything and everyone was fine. That was not the case. Is saw my son on the carpet passed out. My wife was getting hysterical. I started answering the endless questions they had. Which hospital, whats your SSN and all that bull.
My wife had taken him to the nearby park, and he started getting hives all over his body. She rushed home and when it looked serious, she called 911, which was the right thing to do. After umpteen trips to the hopital and check ups, it turned out he was allergic to fire ants! And now we had another challenge. Watching him almost at every step while he is outside. He needs a epipen carried anywhere he goes ! Our troubles were certainly not going away.
I saw the medics rush into my house. Various thought ran across my mind in those micro seconds. All i had wished was everything and everyone was fine. That was not the case. Is saw my son on the carpet passed out. My wife was getting hysterical. I started answering the endless questions they had. Which hospital, whats your SSN and all that bull.
My wife had taken him to the nearby park, and he started getting hives all over his body. She rushed home and when it looked serious, she called 911, which was the right thing to do. After umpteen trips to the hopital and check ups, it turned out he was allergic to fire ants! And now we had another challenge. Watching him almost at every step while he is outside. He needs a epipen carried anywhere he goes ! Our troubles were certainly not going away.
Speech
Time was running out. The hours from Wake county was simply not enough, nor effective. As a desperate measure we talked to a private speech specialist. Her charges were $75 for a 30 minute session after insurance !. All i could afford (with great difficulty) was 2 sessions of 30 minutes every week. Mind you, thats $600 every month.
I had my doubts about what could happen in 30 minute sessions. She recommended getting him at least 30 to 40 hours every week. She did refer us to 2 places that cater to our sons needs. Its more of a one on one sessions, which is very effective, but the cost was... about three times my mortgage !! How in the world can i manage that kind of money ? $2500 !! and mind you this was not full time. I have heard of people using their equities, selling their cars, even cutting their cable or cellphones just to save anything anywhere that was possible.
I had my doubts about what could happen in 30 minute sessions. She recommended getting him at least 30 to 40 hours every week. She did refer us to 2 places that cater to our sons needs. Its more of a one on one sessions, which is very effective, but the cost was... about three times my mortgage !! How in the world can i manage that kind of money ? $2500 !! and mind you this was not full time. I have heard of people using their equities, selling their cars, even cutting their cable or cellphones just to save anything anywhere that was possible.
Stigma ?
I have had issues with my wife regarding my sons autism. She wants to keep the facts under wraps. She has not told anyone in her family (or mine) about our sons condition. She wants to 'fix' him first before she tells everyone about it. At the same time she is worried that people will start calling him names, or make fun of his condition.
This is where i totally disagree with her. I believe a family is there during the ups and downs, during good times as well as bad times. If for nothing else, we need that moral support so badly. Who knows, we may get good referrals to doctors, other parents, groups etc. My approach is : This is my son, this is how he is. If you accept him as he is... great! if not... adios!
I feel she is being totally foolish, and to some extent selfish. Gives me the feeling that she is placing others opinion as a higher priority than our sons recovery... if that is a possibility.
This is where i totally disagree with her. I believe a family is there during the ups and downs, during good times as well as bad times. If for nothing else, we need that moral support so badly. Who knows, we may get good referrals to doctors, other parents, groups etc. My approach is : This is my son, this is how he is. If you accept him as he is... great! if not... adios!
I feel she is being totally foolish, and to some extent selfish. Gives me the feeling that she is placing others opinion as a higher priority than our sons recovery... if that is a possibility.
Pre School
Something that we could afford was putting him into Early Steps Learning Preschool. They provide services for children which includes occupational and physical therapy, speech-language pathology, developmental therapy. It was just for 3 hours, twice a week. Well, there is no direct entry. We were on the waiting list for quite some time, before a slot was provided for us. But remember, although it is good, this is just not enough. Its good as a filler or during transition.
Here are their contact details :
Website : www.pedtherapy.com
Phone : 919) 854-0404
Email : ghighsmith@pedtherapy.com
Here are their contact details :
Website : www.pedtherapy.com
Phone : 919) 854-0404
Email : ghighsmith@pedtherapy.com
Mariposa School
The Mariposa School is specifically for children with autism and other developmental disabilities. Its a year round, and uses one-on-one instruction innovative teaching techniques. Based in Cary, NC. Sounds very promising, provided again you have the money ! Monthly fees could range from $1500 to $4500 per month depending on the number of hours the child stays there.
I tried my best. I have sold my priced possessions (my Canon digital SLR camera, my iPhone), i gave up my dreams of a bigger house, the 7 series BMW. I have worked for the last 2 years without a break, even on thanksgiving, Xmas, new year! In fact i have taken up some handymans jobs painting rooms, sheetrocking, tiling etc. Anything to make that extra few bucks so that my son can attend a few more hours of the speech sessions... but all in vain ! I need to win a lottery if i have to provide my son what he needs now at this crucial juncture.
Here are their contact details :
Website : www.mariposaschool.org
Phone : (919) 461-0600
Email : info@MariposaSchool.org
I tried my best. I have sold my priced possessions (my Canon digital SLR camera, my iPhone), i gave up my dreams of a bigger house, the 7 series BMW. I have worked for the last 2 years without a break, even on thanksgiving, Xmas, new year! In fact i have taken up some handymans jobs painting rooms, sheetrocking, tiling etc. Anything to make that extra few bucks so that my son can attend a few more hours of the speech sessions... but all in vain ! I need to win a lottery if i have to provide my son what he needs now at this crucial juncture.
Here are their contact details :
Website : www.mariposaschool.org
Phone : (919) 461-0600
Email : info@MariposaSchool.org
DAN Doctors
DAN doctors regard psychoactive drugs as their last choice, not their first. They offer interventions for mercury and other heavy metal detoxification. It increases verbalization, increases oxygen to areas of the brain that are ischemic. Hyperbaric Oxygen Therapy and other DAN Protocol modalities are being used to help children diagnosed with Autism Spectrum Disorder.
In case someone is interested, he holds regular seminars on these topics. Worth attending. Some of the procedures could sound scary. And yes, check your bank balance first as this is not covered by the insurance companies !
Not a lot of DAN doctors in NC. So check him out. His name is Dr John Pittman.
Here are their contact details :
Website : www.carolinacenter.com
Phone : (919) 571-4391 Toll Free: (800) 473-9812
Email : info@carolinacenter.com
In case someone is interested, he holds regular seminars on these topics. Worth attending. Some of the procedures could sound scary. And yes, check your bank balance first as this is not covered by the insurance companies !
Not a lot of DAN doctors in NC. So check him out. His name is Dr John Pittman.
Here are their contact details :
Website : www.carolinacenter.com
Phone : (919) 571-4391 Toll Free: (800) 473-9812
Email : info@carolinacenter.com
Yahoo Group
A very good source of local information can be found at the Wake County Autism Society of North Carolina yahoo group. A lot of good discussions, concerns, sugestions are available here. I have been a silent participant so far, reading all the posts, but never posted. If nothing, it tells you you are not alone. There are so many other parents who are in the same boat. Rich, poor, black, white, brown... nothing matters. Autism could strike any kid. If your child is normal, say that extra prayer.
Check out the group's homepage at:http://groups.yahoo.com/group/WakeCountyASNC
Email : WakeCountyASNC@yahoogroups.com
Check out the group's homepage at:http://groups.yahoo.com/group/WakeCountyASNC
Email : WakeCountyASNC@yahoogroups.com
Not again
It was the first day of my daughters school (along with my sons first day in 2nd grade). She was joining Kindergarten, a special day for her. My lil one was in pre school. It was nice to meet the new teachers. Little did we realise what was happening with my son in the pre school.
He was taken to the emergency room yet again for his allergies! That was the second time in a few months. He was playing outside (as they did on thursdays), and probably dug out those ants. The teachers were sensible enough to call the ambulance. After the second instace, at least i watch him like a hawk while he is outside. All my outdoor projects went for a toss. My Home Owners Association must have got tired of sending me reminders to mow my lawn. Well, nothing was more important than my sons safety.
He was taken to the emergency room yet again for his allergies! That was the second time in a few months. He was playing outside (as they did on thursdays), and probably dug out those ants. The teachers were sensible enough to call the ambulance. After the second instace, at least i watch him like a hawk while he is outside. All my outdoor projects went for a toss. My Home Owners Association must have got tired of sending me reminders to mow my lawn. Well, nothing was more important than my sons safety.
Looking Ahead
The biggest question that keeps coming back to me is what will be the future like ? What if he does not recover at all and remains like this for the rest of his life ? He may improve a little.... but may not be enough for him to lead a "normal" life. Will he be able to go to school ? Will he finish college ? Will he work ? Will he have a married life ? I hope he does.
What worries me is what will happen to him after me ? I will look after him as long as i live, What will happen to him after that ? Do i still live in US ? Move back to India ? Do i expect his brother to look after him ? maybe he will. What will happen to him now if something happens to me now ! Even if i try to amass some assetts or funds that will suffice for his future... will someone from my family have the heart to atually look after him ? Will they have the patience and tolerance ? Will he be safe ? Can i trust them ?
Dont get me wrong. I have always been a optimist... but i should also think of the worst case scenarios. Hopefully i dont have to worry about all this as he may make a complete recovery ! Amen.
What worries me is what will happen to him after me ? I will look after him as long as i live, What will happen to him after that ? Do i still live in US ? Move back to India ? Do i expect his brother to look after him ? maybe he will. What will happen to him now if something happens to me now ! Even if i try to amass some assetts or funds that will suffice for his future... will someone from my family have the heart to atually look after him ? Will they have the patience and tolerance ? Will he be safe ? Can i trust them ?
Dont get me wrong. I have always been a optimist... but i should also think of the worst case scenarios. Hopefully i dont have to worry about all this as he may make a complete recovery ! Amen.
I Hear, I See, I feel ....
I hear you when you call me weird
I hear you when you call me names
I hear you when you say those hurtful things about me
I hear you when you laugh when i play strangely
I hear you when you say i am different
I hear you when you told my mom i cant stay
I hear you when you talk about me being a pain
I see your anger
I see your shame
I see your frustration
I see your desperation
I see your disappointment
I see your irritation
I see your expression
I feel it when you do not celebrate my birthday
I feel the roughness when you hold me tight
I feel it when you do not take me to the party
I feel it when you push me away
I feel it when you compare me to them
I feel it when you give me that stare
I feel it when you do not care
Yes i heard, and i saw ... and i felt hurt.
I hear you when you call me names
I hear you when you say those hurtful things about me
I hear you when you laugh when i play strangely
I hear you when you say i am different
I hear you when you told my mom i cant stay
I hear you when you talk about me being a pain
I see your anger
I see your shame
I see your frustration
I see your desperation
I see your disappointment
I see your irritation
I see your expression
I feel it when you do not celebrate my birthday
I feel the roughness when you hold me tight
I feel it when you do not take me to the party
I feel it when you push me away
I feel it when you compare me to them
I feel it when you give me that stare
I feel it when you do not care
Yes i heard, and i saw ... and i felt hurt.
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