Robyn's Story

In 1998 our life changed forever. We thought we had it made, four beautiful daughters, nice house, two cars and a cat. The American dream. We went to work and took care of our family. Our careers were average but we were able to work it out that we could be home for our kids and raise them ourselves. We did notice that our youngest daughter, Robyn, was struggling to meet her milestones. We convinced ourselves that all babies developed differently and we just had to work a little harder than we did with the other three.

Then one day, we took Robyn in for her six month check up and the doctor seemed alerted that her head was below the average growth rate and she was in fact having trouble sitting up. The doctor made me upset and was putting pressure on me to accept that Robyn was "not perfect". I left there crying. You see Robyn was beautiful. When you look at her with her blond hair and cherub face, you see a happy and normal looking baby. It was just when the doctor put the measuring tape around her head and posted it on the growth chart, she was not normal looking.

The doctor eventually threatened us to get her to a neurologist 'or else'. We did. But we got rid of her as our baby's doctor.

We saw the neurologist and he confirmed that Robyn was in fact developmentally delayed and micro cephalic. There is no reason for it. It just is. There was no facial or cranial problems that would give us reason to believe her life was in danger. The neurologist said she had low milination, but it was not degenerative. 

We were grateful that our child had no life threatening problems, but we were also devastated at the loss of a normal life for our beautiful little girl.

We were bereft. We found out our perfect little girl was not 'normal'. All our plans for her and our family were not going to work. Our family suffered a loss, we were not ready for this. We never even considered it a possibility when we were planning our family. 'How could this happen? I don t drink, smoke or do drugs. Why us?'

We went through the stages of grief and depression.

However, Robyn didn t know what was going on. She was just as happy and loving as the day before we took her to the doctor that fateful day. She eventually learned to sit up, crawl and walk.  Although, she walked on her toes. Toe walking, as we found out was a sign of developmental difficulties. She had difficulty focusing, playing, understanding and speaking. She still does.  

Our other three daughters were still young and really didn t understand what was wrong. They loved their sister and didn t treat her any different. As they got older they began to see the difference and also the difficulties that came with having a sibling who couldn t talk or understand what was being said. Robyn was their sister, however,  and they accepted it.  

We followed all the professional recommendations, speech therapy, physical therapy and occupational therapy. She went to a special preschool and enrolled in a self contained 6-1-2 class in elementary. It was becoming more obvious as the years passed that Robyn's chronological and mental age were separating, becoming further apart. It is not that difficult to have a five year old body with a two year old mind. However as the years pass and the body is now nine and mind is still two with sporadic skills, it does present some problems. Robyn has toileting issues and other hygiene issues. Robyn also has trouble understanding safety issues.

Robyns safety has always been a concern. For instatnce, Robyn loves water and almost drowned at the age of three. Robyn also has a high threshold of pain and will not cry when hurt. She has been stung by bees and not given any indication of discomfort. We have found wounds on her but no way to know how she got them. One of the hardest parts of having of having a disabled child is never being able to leave them for a minute. Robyn although disabled she still has the curiosity of a two year old, but has the ability to manipulate things of a nine year old.

We have been lucky so far. She has not suffered either through her disability or her adventures.  

We recently has been to back to the neurologist and been told she is Autistic as well. Although friendly, she has a few other qualities that fit the autism spectrum. This does not really change our daughter or our thoughts about her. It does however open up a few more doors that would have been unavailable without the diagnosis.

As for our family, we love Robyn. We accept our part in her life. Our other three daughters have been through a lot with Robyn's problems and safety issues. They have also pushed her to gain more abilities. As frustrating as it may be to make 'slow progress', we have made progress.

I can only hope that we can continue to move forward. We may not know what the future holds for Robyn or our family, we can only pray that we have the ability to keep making progress.

Kelly, Montgomery, NY

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