Parent's Story

From Diary of a Parent...




The nightmare started with the nagging realization that something was not right with the way our son was developing .This must be every parent's greatest fear.We tried to reassure ourselves with the positive indication that everything was fine.Our son has no physical evidence of problems and he had successfully passed most of the early developmental milestones .We kept hearing ,"so he's not talking yet......Children talk at different times." He was not as social as others, but every child is different , with distinct personalities and temperaments .We wanted to downplay the suspicions. We needed to.We had to.Family members and friends were always eager to help deny the fears.But the nagging feeling just did not go away..

we shared our concern with the pediatrician-someone we trusted and who had aided in our children's care and well being .He said not to worry All children develop a little differently .That was the reassurance we were hoping for and we so wanted to believe it. "May be I'm just being an anxious parent and that may be contributing to the problem," I would say to myself.Maybe I'm doing too much for this child-He is the eldest and they say that can happen with the baby of the family.

But in the passing months ,things did not improve.The gap between our boy and our friend's children continued widen. At the next checkup I again reported the lack of progress .One more time I was told not to worry .There would still be plenty of time for him to talk .The doctor smiled reassuring and said once he start talking , we would probably wish he would be quiet.

One final time me and my husband went together. We pleaded our case with the pediatrician .Maybe it was just to placate us, but he made a referral .I did not know what to feel. Comfort ? Someone finally agreed with us and now something finally can happen .Anger ? I have known something was wrong and no one would listen .Denial ?Perhaps the pediatrician is now overreacting and everything is actually OK. Guilt ?Why did I not follow my gut instincts sooner ?

What I felt was panic wanting to get help for our son immediately .Scheduling to see professionals ,However , proved trying with long waits for appointments and delay that I was beginning to realize he could ill afford . The first professional we met with very coolly and quickly told us that it was autism .I was Devastated , not fully understanding what it meant and all the ramifications , but I knew it was not good . I had actually suspected something like this , but to have the diagnosis was shattering.

I know some parents are not even as "Fortunate " as us to get the diagnosis at such an early age.They are told their child is too young , there is nothing out of the ordinary , The doctor does not see any problem , or at least there is nothing outside of the norm that their children will not outgrow. Without a definitive diagnosis they have bounced from diagnostician to diagnostician , Being provided with alternative and sometimes competing or contradictory explanations for what is occurring with their child.Some parents are given an incorrect diagnosis that sends them down the wrong path altogether.

Having such experience in dealing with professionals , all we can think about is the precious time that our child has lost. You are already feeling tormented and then along come well-meaning family and friends that question the diagnosis. You are so tempted to join them in their disbelief , but deep in your heart you know the best thing to do is to not listen to them .You do not have the time or energy to debate and try convince them.

The nightmare continued . We suffered the pain of not receiving invitations to join in-group activities because unspoken concerns about how our boy would behave.Our circle of friends diminished as we spent increasing time seeking information and treatment .Social activities were difficult to enjoy anyway and birthday party of another child was only reminder of the deficits in our own child.Friends could not have known what to say and their encouragement would sound shallow.I felt isolated ,helpless and lost.

Finally there came an overwhelming need to regroup. Gathering all my strength ,I started trying to sort out options .where do you even start looking for helpful information about autism? The little i founded sound bleak. There was tremendous contradiction and what later turned out to be misinformation.I read that it is little long disorder and that our child would always be seriously impaired. Then there were all supposed " cures". Who was I to believe ? You want to believe that recovery is an option ,but you fear it is really not possible . The nightmare continued.

There are such diverse and strong opinions. Vitamin therapies ,Diets , Allergy treatments ,Play therapy ,sensory integration and so on...There are even some interventions that seem so outrageous they give me a good laugh . And then there are all the therapies Speech , Occupational ,Play , Physical ,Behavioral , Vision .You are told with such conviction that one is absolutely the best and the others may be quite harmful. Then you get a second opinion , Which of course is exactly the opposite .You want to scream!!!

It seemed that there was little that would be truly effective and we would just have to accept the diagnosis and bleak prognosis. We choose special education , hoping our child could at least learn something and be happy . A year later I read something about behavioral treatment and for some reason this time it made me really think . When I questioned the professional , they said no ,it's just not the miracle we were looking for ,that we were already doing everything that could help him . But when I talked to a few parents who were doing intensive behavioral program it seemed like there must be some thing to this .Their children had made amazing progress. When I did more research on my own I found books and scientific articles that provide convincing proof that these anti-behavioral professionals once again were incorrect .The nightmare was ending , but a long road of hard work lay ahead of us...............