Talk about cute kids!! Check out these two and their fabulous mother, Colleen!
Tell me a little about yourself and your family.
My mother always says to me, Colleen, God only gives you what you can handle”. I now feel that God was there whenever I was making some of my life choices. Life led me to take a job as a caregiver for developmentally disabled young ladies. I now am married and have two wonderful, special needs children. I really feel it was fate to have had the experiences of working with the developmentally disabled, and then to raise not one, but two children with different disabilities.
Tell me more about your children’s disabilities. Did you know when they were born that they had disabilities. If not, how did you feel when you discovered it?
My daughter Kennedy, was born prematurely. We really didn’t know at that time that she had a disability. I did always notice little twitches, which were said to be underdeveloped nervous system. A couple years later, still having those twitches they were diagnosed at choreoathetosis. She was originally diagnosed with ataxic CP with unknown cause. She was very floppy and uncoordinated, but learned to walk with a walker, could speak some words orally, did some sign language and was just beginning to use dynamic communication devices at 5 years old.
Then one day, her early childhood teacher called and said she thought she had a seizure. She started some seizure meds and she did ok through that summer. Right as she turned 6 she started kindergarten. I was out and got another call that she was having a seizure and the ambulance was on its way. We tried upping her meds. This continued that fall. She also started vomitting a lot. Fortunatly she already had a gtube for supplemental feedings, but had to switch to a gj tube at that time. She just kept getting worse.
Within months her seizures went from very minor…to needing to be placed in a phenobarb coma right after Christmas that year. It was the worst time in our lives! She was still having seizures after coming out of the coma, but then eventually after several admissions we switched to a med combination that seemed to work. She unfortunatly lost most of her skills at that time. They also think she had a stroke. At that time she was diagnosed as having complex I deficiency, mitochondrial encephalomyopathy(looking like MELAS type mito).
My second chid, Zach was born full term. Again we knew nothing was wrong until he wasn’t talking. Eventually we noticed more and more differences and he was diagnosed with autism.
You blog a lot about your children’s issues. How did you go about making the decision to blog about them?
I made the decision to blog back in September. September is Mitochondrial disease awareness month and I wanted to spread awareness. I share some of the struggles of everyday life with special needs children…and also the many joys. I have always loved to receive support and give support to other families with special needs. I have been a member of a forum called specialparents.org for a few years now and wanted to further this support system. I also live very far from family and wanted to find a way to share with them our day.
How have your children’s disabilities affected you as a person and as a mother? What did you do right? What do you wish you had done differently?
At times I feel I have become a much stronger person, other times I just want to melt! Sometimes I wish I hadn’t pushed Kennedy so much when she was a toddler. We were always busy trying to get her therapies and activities to help her. I know she needed those things, but to see her lose those abilities now it is difficult, and I wish I just spent more time babying her.
I think, knowing how the early intervention system works really helped with Zach. If I hadn’t already been involved I don’t think I would have gotten services for him as early as I did, and he may not have made as much progress as he has.
What do you want other parents to know?
Your child is still the same child no matter what their diagnosis is…a diagnosis doesn’t change a person! Never underestimate your child. You never really know your child’s true potential! Also that being said…no two children are alike. Don’t judge based on a diagnosis.
Be sure to stop by and say hello to this special family at The Princess and The Monkey blog!
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.