Autism Awareness Month - One Mother's Story

by Claudine

As many of us know April is Autism Awareness Month.  As April draws to a close I wanted to take an opportunity to again highlight a special story that was first published in 2008.  This special story was written and shared by my incredible sister-in-law. 

When this article was first written in April 2008 Joe Jr. was 16 years-old.  Today he is 21 years-old and is thriving as a college junior who will graduate in May 2014.  He works hard at school, he is busy every summer at his job and he is currently debating whether he wants to continue on to get his master's degree. He is beyond amazing!

I am a firm believer that his successes in life are due in large part to early intervention, loving and engaged parents, an all-star sister and, of course, his own amazing efforts!  I hope you find my sister-in-law's journey to be moving and inspirational.


Joseph was born on November 19, 1991; he was named after two great men in this world, his Father and his Grandfather. Second in line to his sister Stephanie, just 12 months his senior. Joe is currently 16 years old and a sophomore at our local PUBLIC school; I emphasize PUBLIC because like all children afflicted with Autism, we were facing huge odds that Joe would one-day talk, let alone attend Public High School. He is a nut for sports and, although does not play them, can tell you every fact and statistic there is to know on every team, player or division. He currently takes stats for the girl's Basketball team and boys Softball at his High School. He loves Drama, Girls and has performed in many school productions. Like all teenagers, is anxious to drive and just passed his permit test in the state of NJ. Joe is liked and admired by everyone and is the most outgoing child. Always wanting to be a part or lend a helping hand. Most important, he is happy. This was NOT how it all began........

Although premature, Joe was a beautiful baby who I fell in love with instantly. He had big blue eyes and a smile that just grabbed your heart and made you tingle right down to your toes. Life could not have gotten any better, a wonderful daughter and now our son, babbling, cooing and smiling that bright sunny smile. Until one day at the end of his 9th month, it was like a shade went down and we lost our son. No more babbling, cooing, no more smile. He stared out into space and would not respond to any verbal stimuli, only the garage door opening and closing. The doctors said he was fine, that I was over reacting, comparing him to his sister. But I knew, something in my heart told me things were not right. I just could not figure out what it was or why. Finally after two months of not sleeping, constant worry, gripping fear and a nagging feeling (you know that feeling), "we set out" on a mission, a mission to find our son.

After many tests and more tests, we were told everything from, "he's behind" to "he has a hearing problem". I had been doing a lot of reading on my own, when I read a section on Autism. There it was again, this nagging feeling in my heart. I approached one of the specialist's Joe was seeing, I finally blurted out one day, "I think our son is Autistic, do you agree"? I'll never forget the look on the woman's face. She was quiet for a moment and then very matter a factly said "Yes".

Mind you Mrs. Kurp he is young, 12 months, but it looks like that is where he is headed. A flood of emotions filled my head, my heart, this only happens to other people I thought, but something else occurred at the same time, my motherly instinct kicked in, wanting to "fix it" and make everything alright. And so it started, the therapy, the doctors and the tests. I think the decision making was the hardest part. There is so much out there. We were living in Michigan at the time, a very non-progressive state. Joe was to young to give an actual diagnosis,and in their words "was too young for treatment". So we took action. I took classes in Speech and got a home based program for Sensory Integration. We actually converted our basement into a gym. The specialist's words kept ringing in my head the day I got that final "yes". Those words ring in my head till this day whenever a decision has to be made for Joe, "Do what works for YOUR child, treat the symptoms, not the diagnosis of Autism, key into what his weaknesses are and treat them individually. It's about Joe, not the disability.

As we know, Autism is different with every child. Not every treatment or course of therapy is going to be right for "all" Autistic children. Joe's speech was delayed so we started there. He also displayed a lot of characteristics such as hand flapping, banging his head and tantrums that would come out of nowhere. We started a very intense ABA (Applied Behavioral Analysis) program. We were just beginning to get into the swing of things when we were moved to NJ for my Husband's work. Little did we know New Jersey is one of the most progressive States for Autism, with schools and programs for people afflicted from preschool through adulthood.

After researching and a lot of gut decision making, we decided to send Joe to the Douglas Developmental Center at Rutgers University. They practice the "Lovaas" method; proven with our son to be the right treatment program. The earlier you start makes all the difference. Joe was 3, not yet out of diapers. Was I crazy to be sending him on a bus 1 hour away from home everyday to attend a school for 5 hours a day? I followed the bus for the first month, wanting an excuse to back out of this new decision, a new way of life. But deep down, we knew we had to do it for Joe. The school trains families in ABA and instructs you to be consistent at home to their teachings. This went on for the next 3 years; Joe was doing great and progressing! But like all good things, sooner or later they come to an end due to a change in your life. Joe had completed the program and the next decision was do we continue with private schooling or start to include him in the "normal" public school system? We chose public school. I guess my main concern and thought, at the time, was although Autism is not curable, you can learn to live with it and what better way to do that then to make him part of "real life". I felt confident that we had given many of the skills he would need to successfully transition into a public school setting. A "real life" setting. And after all, our "real life" experiences make us the people we are today. Oh...did I mention at the time we were ready to enroll Joe in public school we found out we were moving again? While we were still in NJ, we would still have to start all over with new schools, new case manager, new doctors, etc.

I later discovered that these moves were helping not hindering Joe's progress. Joe was forced to deal with different people and surroundings. Granted these transitions were not easy, but I do believe it has helped him "roll" with what life asked of him. This new decision and life was very different from the one of private programs.

I found out that it would take a lot of determination, education and fight on my part if my son was going to succeed in a public school setting. I can not emphasize this enough, parents who have an Autistic child must LEARN THEIR STATE'S SPECIAL EDUCATION LAW! Know it backward, forwards, live it, eat it and do it again everyday! Services are so hard to get in public schools and every state is different. We know insurance companies will not pay for the kind of services "our kids" need. That is another story for another time. You have to max out the help you get from the school system and supplement it with other services, if needed. Often times we take what they will give us, not knowing what our kids are "entitled to".

IEP's (Individual Education Plans) can get pretty intense. I took a course in writing and planning an IEP. There is a wonderful organization in NJ called COSAC, a parent's dream. COSAC supports both the child and the parents. You are your child's only advocate! If you don't know your rights and how to go about receiving them, how will your child progress? We had our battles. The school system refused Joe an aide to assist him. You have to remember, at that time, not many professionals in the public sector knew how to handle or should I say "properly handle" Autistic children. Most school boards were able to provide aides for "Special Needs" children, but not specifically for Autistic children.

Ultimately, my husband and I put the school in touch with the outreach program at Douglas Developmental Center at Rutgers University and Eden Institute. The school eventually brought in a consultant who not only helped Joe but also aided many other children in the district. We have found that you have to pick your battles wisely with the school system. If you work with them, your child will get more in return.

Joe's middle school years were the hardest; the whole social thing can be devastating. The phone never rings. Some children are downright mean, noticing he was different, never including him at parties, inviting other children right in front of him. Some kids really need to be educated in Autism. They don't understand that Autistic children have the same feelings and hurts. Just like any other child they want so badly to have friends too. We went out of our way to have play-dates and get-together's so Joe could feel a part of things. Slowly, he built a group of friends that turned out to be some of his biggest advocates. Then it happened! Yes, again, we moved. Devastating, but not life threatening, we persevered. He is still in touch with "that group" of wonderful children and has made many more friends in our current residence. High School is much easier. Kids are more aware of themselves, more accepting of people's differences. Maturity combined with compassion, I believe, can only be learned with time.

This article was written with the intent to help other mothers who may be in the same situation or facing similar obstacles. There is "light" that helps along this journey we are on and although written from a Mother's point of view, my son and I could not have come this far without the help and support of many gifted and talented professionals. In addition, our daughter Stephanie has been Joe's best role model and second mother. Lastly, my wonderful husband who is my rock, my angel from Heaven, who always makes things happen. Sometimes a child with special needs can tear two people apart. We were fortunate, it brought us closer together. Don't get me wrong, we had our disagreements, still do, but in the end we both realize, it's not about what I want or what he wants, it's "about Joe".


KID TRIPS NOTE:

Special thanks to Lynne Kurp, my wonderful sister-in-law, for sharing her story. As a special note, Lynne also wanted readers to know that in addition to the everyday needs of an Autistic child, parents must also focus on Estate Planning. There are a number of workshops that can be helpful. Key advice is covered, such as never put your child's name on a bank account, a trust, a CD etc. Parents need to have a custodial account as well as an action for guardianship.

You can find out more at www.autismspeaks.org and your local Autism Society of America Chapter. One other link of interest with regard to Estate Planning can be found on the Autism and PDD website.