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Deana and Jakob

Having a child with special needs is a world that is ever changing and adventurous. Just when you think you have things figured out, “POP” a whole new adventure begins. Maybe I need to introduce myself and then explain what I mean.

My name is Deana and I am the parent of a 10 yr old named Jakob who was diagnosed with Spastic Quadriplegic Cerebral Palsy and Cortical Vision Impairment. Due to the vision impairment, Jakob is classified as legally blind. We were told that due to the vision impairment that he would randomly lose his vision without a specific reason why this occurs. So over the years he has had episodes where he puts his head down for brief periods of time. We always thought he had lost his vision and was listening until he regained the vision.

So for 10 yrs this has been the case until we started noticing little things that weren’t quite right. We felt something was different but couldn’t pinpoint it, so life went on till we started getting comments and concerns from his therapists.

He would have random moments when he was unresponsive during therapy sessions, sort of a blanking out type thing. I thought “Oh No” what if he is having “silent” seizures and we’re not catching them. So we made an appointment with the neurologist, had the EEG and MRI done to determine what was going on.

Well, needless to say, in all our infinite parent wisdom we didn’t know that Jakob was having and, apparently, had been having seizures since he incurred the brain damage. UGH! I thought what type of parent am I not to have realized that was what was going on, not just loss of vision but a seizure.

Well, I am just like every other parent. We try but we can’t always find and fix everything on time, but we do get there. Jakob is now on seizure medication and still trooping along. Like I said, having a child with special needs is ever changing and adventurous.