There's My Boy....And This is His Story: REPOST

Since it is Autism Awareness Month....I decided to do a few re-posts about my sweet son, Callahan! This was originally posted in September 2008! Cal is now 10....soon to be 11!

In the mix of my 4 princesses, there lives one prince....Callahan. He is the second to the oldest child (age 9) in our family and is a wonderful brother: older and younger. When Cal was about to turn 4 years old, he was diagnosed with autism. I don't have all the answers, and I don't claim to; but I hope by sharing his story and some of our struggles and praises, we can possibly minister to another family who might be fighting this battle.

When Cal was a baby, I remember thinking how much slower he was at doing things than Addison had been. I remember thinking, it's just because he's a boy - boys usually do mature slower than girls. I knew this well, because at the time I was teaching a transitional kindergarten class which was designed for children who were kindergarten age; but who were not ready to attend kindergarten either emotionally, academically or socially. My class that year had all boys. I remember thinking he's not talking... maybe it's because he can't hear very well. I remember thinking he's not walking because he is sooooo big, he just can't heave himself up yet. All the while I had a nagging feeling inside.

When he was 2 and we went for his 2 year old checkup, my pediatrician asked me the standard questions: Does he ?? Does he ?? Does he ?? All of which I answered "NO"! My pediatrician arranged for ECI (Early Childhood Intervention) to assess Cal, so he began to receive services. He qualified for speech (he wasn't talking at all yet), OT and PT. His motor skills were extremely delayed, and he exhibited "floppy" muscles and lack of balance. He was diagnosed with Sensory Integration Disorder, because he couldn't tolerate the feel and texture of many things. He slept with shoes on his feet and never took them off, except to bathe, until just recently. He had gag reflux and threw up many things that he ate. He received the services for about 6 months without much progress.

Cal began to have chronic fluid on his ears, never ear infections, but just fluid. We treated him with antibiotics for about a month, and then my pediatrician recommended getting his hearing tested; because he still wasn't talking much at all. Sure enough...he failed the hearing test which was actually a relief to me, because I thought this explained all my son's delays- he just can't hear. We had tubes put in his ears on his 3rd birthday which alleviated the fluid, and he was able to pass his hearing test YEA!

ECI only services children until they turn 3, then the children are placed into our public school system for services, which is exactly what happened with Callahan. Remember, we live in Texas, so laws are different depending on where you live. He was tested through the school system, and his score was that of a child who was severely "mentally retarded" the diagnosticians words, not mine. I left there, sobbing and knowing in my heart, that my boy was not "mentally retarded". There was something terribly wrong, but I just couldn't put my finger on it. The good news, for lack of a better word, was that because his score was so low; he qualified for every service available through the public school system. He began school that summer, one week after he turned 3.

When he was about 3 1/2 years old, he finally started to talk. He had been receiving a lot of speech, as well as, other therapies. I noticed, as he would start talking, that everything he said was completely out of context and constant repeating (echolalia). Cal would say "Hello Chris, Hello Will" over and over and over again....several days after they had come over to watch football with us. He would repeat phrases over and over constantly that had nothing to do with what was going on around him. I started thinking to myself, this boy is autistic; but I really didn't know what that meant. All I knew was what I had seen in the movie Rainman. I started researching and looking it up and had come to the conclusion that he had High Functioning Autistim. About that time, the school district called an ARD. They informed N Payne and I that they wanted to test Callahan for autism. N Payne and I sat in the ARD and nodded in agreement. I remember the therapists, teachers, counselors, everyone looking at us in a sort of disbelief. One of them said something like....usually parents are very defensive and upset when this test is requested. N Payne said something like it's not that we aren't upset about this possibility, but we too think that may be the answer to this riddle. We consulted our pediatrician, as she too had mentioned the possibility of autism. She said the school districts assessment would be sufficient, and we would not need to seek another assessment. Our school district happens to be top, in the area, for special services(praise the Lord). She referred us to a neurologist, just to rule some things out, and she had a blood test taken to test for Fragile X. By this time, I was pregnant with Bryna (our 4th child). We had Drew before we really suspected anything was not typical about Cal, she and Cal are about 19 months apart; and she seemed to be developing as a typical child should. I remember sitting in the room when they gave me the autism test results and went over in great detail what that meant. I remember thinking, through the explanation of everything, I need to pay attention to this; but all I kept thinking was my son has autism. I remember leaving there and calling N Payne to tell him what we had already suspected. I remember him saying, "Now we know what it is, and we know he's not just a defiant (actually he said a brat, but I prefer the word defiant). Now we can help him".

By this time, in Cal's life, we had faced many many challenges with him. Transitions were horrible, and an extreme temper fit was guaranteed. His eating had become increasingly challenging. Cal had become very aggressive....biting and hitting me several times per day. We felt trapped, by this child that we didn't understand, because we never knew what was going to set him off. People, stared at us when a meltdown occured, which during this time was quite frequent. There were countless sleepless nights for Cal, and he was nowhere near being potty trained (he was 4).

Then there was the Fragile X diagnosis...yes he did have it, but it was extremely mild. My pediatrician referred us to a genetic specialist to help explain this diagnosis and to see if we needed to get our daughters tested. I remember when she called me to give me the results, the first thing she asked me is "Do you know the sex of your baby that you are carrying"? I did know that it was a girl, and I told her that to which her reply was "Oh Good"! Then she said the test results for Fragile X were positive. I had never even heard of this before he was tested and had since read about it enough to know that it was a genetic disease and if he had it, it had come from me. My heart just sank, because I thought this is all my fault. As a mother, I felt I had failed my child. I still carry guilt about this, although I know there is nothing I could have done to change it or nothing I did to cause it. I had read that Fragile X can sometimes cause a person to exhibit autistic behaviors, so I immediately assumed his behavior was the Fragile X not autism. We were told that Cal's diagnosis was mild, and the genetic specialist couldn't determine if that is what caused his autistic behaviors; because Fragile X was a fairly new "disorder". He did give us hope that there could be a cure for Fragile X some day, because they do know what is affected by it (X chromosomes). Our girls would need to be tested, later in life, to see if they are carriers like their mother; so they would know if there was a chance their children could have it as well. If we ever had any more boys, they would definitely be affected by Fragile X probably not any more sever than Cal, but nonetheless they would have it. As generations go on (in Cal's grandchildren) there will be more severe mutations of the X chromosome and more severe Fragile X and possibly mental retardation. Since this diagnosis, we have had another daughter (not planned, but that's another blog story); and my husband decided that he didn't want to have anymore children(I had hoped for at least 7). This was due largely in part to the Fragile X. He loves Cal as much as any father could love his child (sometimes I think more), but he doesn't want to risk having another boy being affected by this genetic disorder. It makes my heart ache, and I weep when I think about it....not the Fragile X part... I've dealt with that; but the not having anymore children part (that too is another blog story). It has been 5 years since Cal was diagnosed with autism, and it has been a long and winding road. He has made huge strides, with a lot of therapy and support, and he can now carry on a conversation with you. It may be a conversation that is completely scripted from a TV show or song or something that he's heard, but he does have a large vocabulary now. He is learning how to interact with others, and he is learning how to transition. Most average people, who meet him, just think he is quirky; but as one friend said to me "Aren't we all?" I am still learning as well. I know that this child was put on this earth for a specific purpose as I believe we all are. In my heart I believe that one of the things I am suppose to gain from having Callahan in my life is to not take anything for granted and be grateful. I have read about so many children, who are so much more severly affected by autism, and my heart breaks for their families. There are many who will never hear their child call them mama. I am so blessed that I am able to hear his voice, and he will talk to me. I don't know if Cal will ever be cured, but I do know that his disorder is not life threatening; and for that I thank God daily. There are families who face so many more challenging circumstances than ours has. I'm not saying that I haven't shed many tears and still often do; but I am also grateful that our circumstances are what they are. As Cal grows and thrives, my tears of sorrow have often turned to tears of joy. Having 4 typical children has taught me that we, as parents, do tend to take for granted some of the little things in life that our children do: non prompted kisses and hugs, looking in your eyes and telling you he loves you and knowing what that means, being able to communicate with your child, having him make friends, going to any restaurant you choose without wondering if he will go in or not. When the day comes that Cal looks me in the eye and tells me he loves me, I will know without a doubt that God is in that moment; and He is looking at me through those very soulful eyes of my boy.