My friend Mariko gave me permission to reprint this letter to one of the parent lists. I`ve known her 8 years.............
"I have been a member of this List almost 8 years. This group was small back then and we were like a family. We had nobody else and nowhere else to go! I remember trying to get a consultant and there were only 2 providers to contact! Things have changed since then and I am so thrilled to see how much easier it is to find a consultant and to get funding compared to what it was like 8 years ago.
Our program was not good the first few years even though we got a consultant from a reputable provider. We switched the provider and our son blossomed. He is 12 years old now and unfortunately he didn`t "recover" but he came a long way. He had no language and no ability to even echo words when he was 4 years old. But now he talks and shares his feelings and excitement with us. He is happy and he truly found who he is, and he is happy and comfortable with who he is. During the last 8 years, we lived the life of ABA. Our son`s therapy didn`t end when his therapists left our house, it continued on into our family life as well. We had no life outside of our house during the past 8 years and the sad thing is that we were so deep in it, we didn`t even know we had no life! : ) hehe....
Last week, we went on our very first family vacation. To go on a vacation takes energy, so we didn`t even think of going in the last 8 years. I had to fight back tears so many times, just looking at our son sitting in the airplane not making noises and not doing anything weird, but reading a book quietly, looking around or watching a DVD. I wanted to capture this moment and show all the therapists who stuck with us and worked so hard day after day to help our son overcome and to free him from the bondage he was in. He was swimming all day in the ocean, he went boating, he went up para-sailing, etc, he had so much fun and he was the only one who got a perfect tan! I am so happy for him. I am so happy for my husband, for my daughter and for me. We went through hard times but we came out good. It was especially great to hear our NT daughter praying and thanking God for everything we went through and for the great vacation that we were able to have.
I encourage new parents and all of you, never give up. Even if the child won`t recover, the result is wonderful. My son enjoys life. He couldn`t enjoy life before. He was busy stimming, or he was busy being angry because things were not the way they were "supposed" to be from his prospective. He is free from all that and now he is finding out and enjoying what life can offer, everything that we take for granted, he didn`t know they existed. I think all the work, tears, sacrifice and suffering brought him and us "freedom". You will get there.
I haven't been really following a lot on the list but I remember reading something about ABA and a child's right. From what I read little bit, it seemed to say that as a child, they should have a right to refuse receiving ABA??? I thought how weird is that? I hated practicing a piano when I was a child. But I am grateful that my mother nagged me to practice because playing a piano brings so much joy to me now. I enrolled my daughter in a math program. She hates it but I tell her how this will help her in future even though she just can't "see" it now. I tell her to trust me on this. Of course she doesn't understand it and does it with sometimes a bad attitude, but I know when she gets older she will appreciate it.
Children need guidance and it is our responsibility to guide them to the right path. They don't know what is the right path yet. The children's right is to be loved and to be guided to the right path and as parents our responsibility is big. Their lives are in our hands.
I also have been thinking about ABA in general. ABA became so accessible, but with it, problems arose. I have seen a bad program and I know that badly implemented ABA/VB will affect children and the family in a negative way. Quality is a very important issue. I thought about how we can assure that all programs are run well. I saw many different ideas but I just don't see it happening in all the programs. It seems though it all comes down to the parents. If parents understand ABA/VB, then we can watch out for the quality. If we find that the consultant is burned out and not doing a good job, we can kick him out! But if we don't know what's going on, who will do this??
And there is a human aspect too. You can have Dr.Lovaas or Dr.Carbone as your consultant, but if you don't have the right therapists, your program won't run smoothly. You can have a wonderful group of therapists but if you have an inexperienced consultant, things fall apart. You can have Dr.s for your consultant and a wonderful group of therapists, but if you are not active in the program, your program will not be consistent. See, how everything has to work together? Oh, I forgot to mention about the child. Maybe a child has other medical issues that need to be addressed. We have to consider all of those and make sure that all are addressed.
Wow, what a challenge! But I have to say that it is so tough to find talented consultants. There are many who understand ABA/VB in the textbook but to apply it to the living person, it takes a very special person to do it. We are dealing with a human! I have met a very small handful of people who actually get it and implement living, dynamic and a child specific program for a family. When you see it, you know it. I encourage parents to be educated about ABA/VB. Don`t push your child to a therapist when they come to your house. Be an active part of the program. You will be the only therapist who will stay with him forever.
Ask questions and if you feel that something is not quite right, voice your opinion. You know your child and many times you are right. This is the only way we can assure our children and the children to come to receive a good quality ABA/VB. If we are not smart consumers, we will continue facing problems after problems. I love what true ABA can do for our kids and I want to see nothing but true ABA. Then we won`t hear an argument about how ABA devastates children.
Keep faith!“
Mariko