My journey with autism has had many paths. At first, I was in complete denial anything was wrong or off with my perfect children. I think many parents over look the things that pop out and say autism at first. For me, I just saw a gifted smart child who was a bit clumsy and different. I admit, I was in denial for some time and because he was gifted the teachers couldn't really pin point the problem either. They would just say, "Your son isn't like the other children" etc. Of course he isn't, I would say with love in my heart. He is gifted. Being in private schools probably didn't help because they tend to coddle the parents.

A few years later the health issues started to pop-up and at this point I decided to have My oldest son's IQ tested by a well known Physiologist. This would be the turning point in his diagnoses. He did test out gifted but she noticed he was off task and had sensory issues. She also noticed that My son had convergence issues with his eyes. Which means his eye's muscles weren't working together so in theory he was seeing double. Yet, this gifted child learned to read at the age of four. So off we went to the next doctor. An , eye doctor who confirmed yes, he had convergence issues with his eyes. After the third visit to his office the doctor stopped in the middle of an exam and said, "something else is going on here, I think I need to send you to a neurologist". Now you must know, for what ever reason, each doctor annoyed me. Maybe it was because they were getting closer to the answer that I was avoiding or resentment of what was to come but I never really liked most of my sons doctors.

Now, at the same time we were referred to a neurologist my son started to have wondering/daydreaming spells at his private school. And for the first time his second grade teacher used the A word. How dare she! My son's social behavior's became more and more inappropriate. Like the time all the kids in his class had to make birthday cards for a little girl and my son wrote in his, "Happy Birthday you bossy little girl". Or the time in advanced reading group he screamed at the kids that he would no longer read with them if they didn't use more emotion in their voices. Little social issues like this were becoming a common daily experience. Also, my son had few friends. At P.E. he would walk the playground by himself. He would come home and cry telling me no one wanted to play with him. This broke my heart. I decided to take my son to a well known shrink.

In the middle of seeing our new shrink we also went to see the Neurologist who I was not impressed with. She checked my son out, had him jump on one foot etc. And then said they would do an EEG to see if he was having seizure's because of the wondering/daydreaming issues at school. In her office visit she saw no neurological issues. So we pushed on. Next stop was the new shrinks visit. The moment he met my son he knew something was different/wrong. He talked to me, took notes, talked to my son and then said, " Your son reminds me of another patient I have who has Mitochondrial Disease." He advised us to have an OT evaluation and to see a geneticist for some testing.

The OT evaluation determined my son had hypotonia and he was hypoflexive. Which means he has poor muscle tone/strength and his joints are very flexible/bendy. He was also diagnosed with sensory issues. Next stop, the geneticist. She did lots of blood work and genetic testing look for any problems. All which came back normal. She then decided because of my son's other issues with Sensory/Muscles and Fatigue she would have a muscle biopsy done to see if there were any issues with his mitochondria. Weeks later and the results showed a lack of cytochrome O. and odd muscle fibers which were usually seen in people with Mitochondrial Disease. They put my son on supplements since there is no cure for Mitochondrial Disease and did more genetic testing. They were never able to figure out the type of Mito my son has. I talked to the scientist who did the lab work and she told me it is like finding a needle in a hay stack. We may never know.

Our last visit with the Geneticist was a good one. My undiagnosed Aspie had a melt down in her office. The Doctor looked shocked and concerned. She informs me we need to have him checked out for autism. Oh no, she used the A word! I was pissed. But deep down inside I was starting to realize something more then all the other issues was going on. What I didn't realize at the time was that Mitochondrial Disease can cause Autistic Spectrum Disorder traits, as well as other neurological/physical issues my son was experiencing. It was all connected but at the time I was clueless to this fact and to be honest so were some of the doctors.

At this point my second child is now having behavioral issues in school and is now seeing the shrink for Adhd and Anxiety. Both sons are on medications for ADHD but it doesn't seem to be helping them in school. I bring the conversation up to my shrink that maybe my oldest has autism. The doctor who has helped us so much at this point hates to put autism tags on children hesitates and says your son is very bright. Are you sure you want this in his records? I, at this point am ready. I think the doctor was waiting for me to get to this point because he already knew I was in denial. I was ready. He said, my oldest son was very high functioning and was more Aspergers in behavior. He had the classic high IQ which is common in Aspie's and that is why they tend to get late diagnoses. He and I discussed my middle child who at this point was being treated for Bi-polar disorder but the meds were not working. The doctor said the middle child was High Functioning Autism with more behavioral issues.

The next big kick in the butt was my kids getting kicked out of private school. My whole life I had dreams of my boys being in private schools with small class rooms and close friends. My image and dreams of my family were slowly changing and I have to admit I went into a deep depression. I went to a conference at a local hospital on Mitochondrial Disease and was given the name of a wonderful Neurologist in my area. I was excited that I had found someone who was up on Mitochondrial Disease since few knew much about in in my state.

I made appointments for all three of my boys with this Neurologist. I had all medical information sent to him. He had a long visit with me and my boys. Did some testing in his office and told me to stop spending money on more genetic testing. He said, he has seen Mito cases for years and there are certain things all these children tend to exhibit. Mitochondrial Disease tends to hit many in a family. All three of my boys had neurological and physical symptoms. He ordered MRI's and EEG's on all my boys. My oldest son's EEG came back showing he was suffering from Complex Partial Epilepsy which would explain his moments of daydreaming and loss of memory. My youngest also showed signs of absent seizures. Epilepsy is another symptom of Mitochondrial Disease so the puzzle was slowly being put together.

The kids were put on the proper medications. I started my process of dealing with the public school system and IEPs. My mourning process began too.. I was absolutely depressed. I felt I had been robbed. All three of my kids? How could this have happened? Why did it happen to me? I did everything right! I was a good mother. I breast-fed all my children. My husband was as good father. I was never sick as a child nor was my husband. All these thoughts went rushing through my mind over and over again. With help of my shrink and time,I slowly healed. I had to mourn the loss of the family I thought I had and had to learn to accept the family that was now my reality. I was stuck in a dark place for a long time. I am ashamed to admit this but I was so sad. I withdrew from my family and Friends. I just couldn't understand what was happening to my family. All my dreams of the future were now gone. And I was ashamed of myself for feeling this way.

A good 16 months has past and my mind is in a different place now with my children's diagnoses. I feel I have my power back and I see the light again. I am not going to let my children down. I am going to be their rock. I see they have so many wonderful gifts to offer the world and I want to help them get there. Now my goal is to help not only my children but others. I use to think I will cure my kids. And did searches for days on how to heal them. Then one day my oldest gifted aspie son caught me searching cures for autism. He asked me if I was trying to cure his autism? I was shocked by this questions and did not know how to answer. He said, "mommy, I like myself just the way I am. I don't want to be cured because it would change who I am." This floored me! I told my son I was not trying to cure his autism. Just trying to do some research about autism.

That one moment with my son changed my view about how I was going to approach my journey with autism. I realized that not accepting my son's autism to him was not accepting who he was. I want my child to feel important and to have self esteem. I want to empower him and give him the tools he needs to integrate enough into society to make it. But I don't want to change the coolness of my son that maybe he wouldn't have had he not been given Autism. I don't have all the answers. I understand there are children deeply affected by autism. These children can't even speak and say they love their parents. I believe in cures or treatments for these children. But I also believe society has to have more acceptance for the children that are not so severe. These children have many gifts that come from their asd traits. I embrace their brutal honesty, cute since of humor, incredible creativity and their odd yet sincere understanding for humanity. I don't want my kid to be like every other child. I want an individual who leads not follows. My goal is to help them socially connect enough to bring forth their gifts to the world around them instead of being isolated and confused. Autism is not always a tragedy. Good can come from all this. See the light in your children and give them the acceptance they need to grow.
Thanks
Kim
www.kimdean.com