Monday, October 22, 2007

Caleb's Story

Hi everyone, My name is Jessica and I have 2 sons. Caleb who is 3 and he was diagnosed in September 2006 with Autism and Nathan my happy go lucky 17 month old "normal" son. We have had and are still having a pretty bumpy ride on the long road of the Spectrum. I will share our story from the beginning.

Caleb was born a healthy and happy baby. I was a single mom and I loved every minute of it despite doing it alone. He developed at a advanced rate he was always ahead of where he should have been. Caleb crawled at 3 1/2 months, sat up alone right before that, he had a few words by 6 months and he just seemed to catch on extremely fast to everything he tried. When he was 15 months he was such a wonderful fun loving child, he loved to play with everyone and mostly his cousin because they are just 2 months apart. Well right after his 15 month check up he got really ill and it was a horrible time. He had to be hospitalized for breathing issues and was released the very next day. Well the day after that he had another problem he had somehow got Salmonella. We were living with my brother and SIL at the time and we all were just dumbfounded because he had not had chicken or eggs in that time frame. After all these issues Caleb never went back to being himself. He was having meltdowns, head banging, stopped having interest in other kids and seemed to lose interest in just about everything. Above all he stopped talking and it was just so sudden I had no idea what was going on. So at his 18 month check up I told his regular Nurse Practitioner about everything and she thought it was just a phase because my brother and sil had just had a baby and maybe he felt a little jealousy. OK I thought that's it its a phase not wanting to think something was really wrong with him, even though in the back of my mind I knew something was not right. So in June 2006 he had a 2 yr check up and I again stated all his issues and it was not a phase I told her, I felt something was wrong. She listened and examined Caleb and went over the development list of where he should be and she was astonished that he was so behind and said she would get us in to see some Doctors in a bigger city and she felt it may be Autism. Autism, I was like what in the world is Autism. So I went home with the thinking ok lets just see what happens. Caleb was also referred to a program called Birth to 3, they had a Speech Therapist come out and assess Caleb. I was so upset with the results I wanted to scream. He had the language ability of a 9 month old and he needed to start therapy right away. So while we are waiting for all his medical records to come from Pa to the place that's going to evaluate him we started speech. I believe that if he had not started speech when he did he would have been unable to regain language with actual talking. I miss the therapist he had from Birth to 3, she did wonders with him. In a years time he doubled his speaking ability to the ability of a 18 month old. So getting back to the evaluation, we finally got the appointments in order and spent 3 days driving back and forth to LaCrosse in Wisconsin. The final day was the day of what they call the Arena Assessment. There were about 6 or more professionals present some just watching some interacting with Caleb. At the end of this evaluation every single person agreed Caleb did indeed have Autism and we began our journey.
We went back to LaCrosse to see the Developmental Ped about 3 or 4 times since then and it was just not anything like I thought it would be. This person insisted I treat my son like a dog and give him load and short commands and that's how I was going to get his attention and make him listen to me. I just about laughed in this Dr's face and say how dare you give me this advice. I took Caleb to see Child Psychiatry Dr's with little help other than the simple answer most of us receive " You need to be a better parent and learn different parenting". What, wait a minute are you telling me I am a bad parent and that is why my child behaves the way he does, yeah those thoughts are running through my head. I never went back to that woman again. Then we went to another who listened to my problems, Caleb is violent and aggressive and he is a runner. On and on I am going and his only reply is there is nothing I can tell you to do because you are trying everything I can think to tell you. So since than I have not had much luck with getting proper care for Caleb. He needs someone who knows what is going on and not just assuming he is like others with the label because every single child is different. That is what makes Autism such a puzzle is it not?
So as of now Caleb is in Early Childhood at the local school and he has wonderful teachers and aides who are doing a great job with him. He still is violent and aggressive, he still gets little sleep and he still drapes over me like a blanket. One thing is for sure I love him so much I will do anything to help him but I again have been hit with road block after road block. No one seems to be able to offer me any ideas or helpful insight. Everyday I try and try to get Caleb to do things like play with toys and even eat food but it never works and everyday I get stressed and worn out because it seems like all my energy goes into be his mom, his speech therapist, his OT, his teacher, his doctor and etc. I am not complaining but it would be nice to have someone with insight tell me what may work and what may not. He is on a waiting list for in home therapy but Caleb will not have a slot until late summer 2008.

This is a short version of our story and there may be somethings missing but I like others want this growing problem addressed and I am willing to put our story out there in hopes that maybe just maybe someone will listen and do something instead of just talking about it. Thanks to all of you for listening or reading I should say.


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