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

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 !

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 !!

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.

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.

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.

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

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

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

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

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.