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Our pictures and story continues…

Tommy had a good Apgar score and developed well.

An eye-infection, dental surgery and some minor ear-infections marked the otherwise uneventful first 18 month.

There was – however – no speech forthcoming. Where he was ahead in certain skills like walking, he was definitely behind in language development.

The pediatrician said: He’ll outgrow it - he has a big sister who’s doing all the talking…

When Tommy turned 2 years old we seriously began to worry!

We had just celebrated his big sisters 4th birthday – busy and excited with presents and

cake. Tommy – at age 2 – was NOT interested in ANYTHING!! Is it normal for a 2 year old to not want to rip open the gift packages?

We had already done plenty of “observing”. We were also familiar with the term “autism”. We had an active little girl at home and saw the difference.

Was what he displayed called: ”No eye-contact and anti-social behavior”? What about spinning objects around and what about the fascination with water, sand, smoke and fire or - for that matter with whales?

Mind you – this was before the “Internet” – hard to imagine!

We found and contacted the Autism Society. The local library and various bookstores were other stepping stones.

The Autism Society of America had at that time a spokesperson by the name of William Christopher – M*A*S*H –fans will recognize the name – Father Mulcahy. He and his wife had adopted a little boy and found out he was autistic. I mention this here because as I was reading his book “Mixed Blessings” 1), I found myself not only startled by the similarities he was describing as far as the child’s behavior prior to their diagnosis was concerned, but I also found it incredulous and pretty scary as I read on about the development, especially adolescence. Looking at it now – it’s amazing how similar Tommy’s development was – all the way into young adulthood – but I’m getting ahead of myself here…

We changed Pediatricians (!) and found a great Family Physician who made arrangements to have Tommy evaluated as far as his overall as well as mental development was concerned.

The Tri-Counties-Regional Center labeled Tommy “developmentally delayed”.

This is a convenient term that does not sound too scary – however – unless the delay can be overcome eventually - as time progresses - you’ll end up with significant mental deficiencies (retardation). Tommy was placed in a class for developmentally delayed pre-school kids (a big help for us as our regular day-care-provider did not feel capable to handle him). We attended our first IEP-meeting and were assigned the first of a series of Speech-Therapists. Time passed and nothing changed. Tommy’s hearing was tested to rule out deafness. I had a conversation with another parent at work and she suggested to have Tommy evaluated at Fresno Diagnostic Center and finally get a diagnosis: Well, we knew he was Autistic but they called it “at risk”!

Fresno was a wonderful experience for us. We got the diagnosis but also the hope that Tommy was bright enough to function in a regular Kindergarten class via mainstreaming. After one year of successful mainstreaming we were confronted with the next IEP and the fact that the school did not have the money for the extra teachers-aid needed for Tommy. Tommy was assigned to a severely handicapped classroom and life went on.

We had by then read a lot and tried a lot (including facilitative communication, which did not work for us!). We had found a wonderful Speech Therapist – Doreen – who was not only a teacher but had become a friend as well. She provided a lot of ideas, support and was a great advocate for Tommy in dealing with the school system.

It was the Autism Society of America’s Newsletter - however - that changed everything as we found out about North Carolina and Autistic Classrooms in a regular, age-appropriate school setting.

We had just adopted a puppy dog for the kids and yet an idea was forming and in 1994 we decided to sell the house and pack up the kids and the dog and move to Wake County, NC.

We contacted a relocation realtor and the school administration and hoped for flawless continuation of work (and thus an income) for dad.

A family adventure later we finally settled into a tiny brick ranch in Raleigh, NC.

Tommy was thriving in an Autistic Classroom in Elementary School.

Elementary School continued relatively un-eventful. We were amazed at how much Tommy was able to learn. It was the first time I found myself thinking that all the learning was a way of association – visual association - between the object and the letter / word and or number…

Middle School in another Autistic Classroom started out fine but soon, something changed with Tommy’s behavior. My typically happy and content and generally manageable son started to hit and tear apart things. He was put on medication for the first time. But the drug intervention did not help! Little did we know that there is a difference in medications and the effects they can have.

Difficult soon became intolerable! Tommy became violent and destructive. The School has a zero-violence policy and he got in trouble and was sent home more and more often.

At home Tommy seemed to love destroying video tapes (all his beloved Disney Tapes!) and CD’s.

We started to lock doors and hide items. Tommy was angry and aggressive. Life became pretty miserable.

We figured that the medication did not help and weaned Tommy off. He became less destructive but more restless. We found out about a new program for troubled autistic teens and the school wrote an additional letter of recommendation. Through Tommy’s pediatrician we also found a referral to Duke Pediatric Neurology and Dr. DeLong. He observed Tommy and suggested a different medication – the one Tommy has been on since!

Dr. DeLong also said he could not believe how we had been able to live with this situation! This was the first time the thought set in that maybe Tommy had to be away from us to have the family relax and get some time to recuperate. Guilt changed to a feeling of hope, knowing that we had done everything we could…

At the same time Tommy was accepted at the PATH program for autistic (adolescent) teens.

Tommy had been at summer camp before – so, it wasn’t his first time away from home. But this was different: a lot of tears (for mom) – but for the first time the three of us could breathe a little easier.

You look at your child different when he is away. You love him even more. You miss him but you are also grateful to get a break from the 24/7 of “everything special needs”!

The PATH program (behavior modification) and especially the new medication changed Tommy almost back to his “old self”. He graduated to a program sponsored Group Home and finally came back home at age 15.

Although we looked at other homes as an optional living arrangement, we could not find a Group Home in our area that met with our approval: Tommy was back at home full time – attending an Autistic Classroom at High School and having a Care Giver pick him up at school, take him to the YMCA and out in the community etc. We also found a wonderful Summer Camp for the Handicapped in the Mountains of NC (Camp Sky Ranch) – Tommy was to spend several summers there.

The focus at Middle School level and especially in High School Special Ed changes from Academics to Life-Skills and “Transition” in general.

This may sound great, but in reality the problem is that there are not enough ways to provide job-training (not enough jobs – not enough employers willing to sponsor the training – no money for aids) as well as generally no day programs for the kids after they leave school for good.

What are the parents to do? Find a Group Home and hope for the best!?

We had by then developed a group of confidants: Parent Advocate at ASNC, Social Worker, Dr. DeLong at Duke and Tommy’s wonderful High School Special Ed Teacher (Mr. “D”) - can you believe that he took the kids to school dances and special events on his own time and provided transportation if needed – wow…

We looked into OPTIONS and found waiting lists everywhere: TEACCH operates a farm in Pittsboro – maybe they have a day program – we’ll drive Tommy if we have to…

I had prepared myself to have him home full time as long as there was a meaningful day program somewhere.

Through TEACCH dad found out about Carolina Farms in Albemarle, NC - a brand new project – three Group Homes. Certainly, this would be too good to be true – but they invited us for a visit anyway. There was room for a couple more clients for house # 3 – let’s evaluate Tommy and find out if he would fit in….

This is the happy ending to our story: Tommy is living at “The Farm” and coming home to visit. He has been there for over a year now and is doing well.

Needless to say - mom spoils him a lot when he’s home and mom and dad continue to take him on our annual trip to Seaworld Orlando that means the world to him: Tommy LOVES whales - especially Humpbacks, but Orcas and Belugas and Dolphins etc. as well.

We are fortunate and Tommy is lucky!

But a lot more places and thus opportunities are needed to make it possible for autistic (young) adults to have a secure and meaningful existence especially as the parents get older…

Recently, a variety of media articles and specials have alerted the public’s attention to the fact that there seems to be an ever growing number of children born, that fall under the

category of “Autism Spectrum Disorder”.

Public Awareness is what we need as a first step to look to the future. From there on - however - we need to focus all of our efforts on making this future possible for our children.

My husband and I were told a long time ago during one of Tommy’s first evaluations that it is Society that decides what is normal and what is outside of the norm. Autistic individuals experience the world different due to their disability. That does not make them less human, less lovable and less deserving of a chance…

“The best principles of our republic secure to all its citizens a perfect equality of rights.”

Thomas Jefferson 2)

“And there's purpose and worth to each and every life.”
Ronald Reagan 3)

"He told me that his teachers reported that . . . he was mentally slow, unsociable, and adrift forever in his foolish dreams."
Hans Albert Einstein, on his father, Albert Einstein 4)

“Men are born equal but they are also born different”

Erich Fromm 5)

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