Two years, ten months.
That’s how old my son was when we saw his first seizure.
I was six months pregnant with my daughter and my four year old was sleeping in the same room when my husband and I came into the room. Thinking that Bo was still awake, we tried to talk to him and found him completely unresponsive. That began the journey we have been on for seven years now.
We have been through three neurologists, three diagnoses, six anti-seizure medications, three MRI’s, a PET scan, ten EEG’s, and seven hospital stays and one surgery to implant a device that had a possibility of stopping his seizures completely (which did not work for him). Bo most current diagnosis is Landau-Kleffner Syndrome.
Landau-Kleffner Syndrome is a rare form of epilepsy (only one is diagnosed per year in each of the nation’s major hospitals). Bo's seizures have caused him to have ADHD, autistic tendencies, speech apraxia, balance and short-term memory issues, sensory integration dysfunction, and developmental delays across the board in his academics.
This isn’t to say that it is always bad with Bo. His balance and memory improved after his surgery. He seems to sleep a little better which means he has better school days after adding the valium to his medication regime. He is an extremely caring, loving child with a smile that lights up his entire face.
It has also had a huge impact on his brother and sister’s lives. Anyone who meets his older brother comments about his level of empathy. He is always concerned about other people’s feelings and is much more understanding of a child’s “differences” than a typical eleven year old.
Anyone who knows me knows that I have been a staunch advocate for Bo. I advocate for him at school, at the doctor’s office and in the community. He started receiving services before he was three years old. I force the school to create and follow and IEP (individualized education plan) that is in Bo’s best interest. This past summer, we were granted a once-in-a-lifetime opportunity to go swimming with dolphins, sea lions, and stingrays from the Make-a-Wish Foundation. He even got to go on a behind the scenes tour of his hero, Tony Stewart’s shop while they were getting ready to leave for the Daytona 2011 race.
The next step in my quest for Bo’s services is finally coming to fruition. Almost three years ago we applied for a seizure response dog for Bo (www.canineassistants.com). Let me explain why this is such a big deal for Bo (and our entire family). Almost every seizure that Bo has occurs shortly after he falls asleep. This means the only way I know for sure that he has had a seizure, or hasn’t had a seizure is if I sit with him while he falls asleep, or if he sleeps with me. This has, obviously, proved difficult for me and has made my other children feel left out because only Bo gets to sleep with me. A seizure response dog would sleep with Bo and could alert me when he is having a seizure, so there would never be any question in my mind if he has had a seizure or not.
You ask, if a seizure response dog is so important to his independence (and my family’s piece of mind), why has it taken me three years to make this happen? Honestly, it is all about the money. It costs, on average, $20,000 to train a seizure response dog. Canine Assistants finds a sponsor for the recipient. In our case, they found two.
On Friday, February 18, 2011, Food Lion and Milkbone will present Bo with a check (at 11:00am at the Food Lion on Sheerer’s Road in Mooresville, NC) that will completely cover the cost of training a dog just for Bo (we would L.O.V.E. for anyone to come to the ceremony, it would mean the world to our family as well as Food Lion and Milkbone).
So, why am I going on and on about the difficulties our family has faced? I wanted to let people know:
1) if you have a child with special needs, you aren’t alone.
2) you can be a strong advocate for your child. It may be really hard sometimes, but you also really learn to appreciate all of the little successes.
When people ask me, how do you survive with a child with special needs? Doesn’t it make it harder as a mother or as a family? I survive because when we are at the hospital because Bo has had a prolonged seizure I remember the care and concern that my son and daughter have for their brother and the way they instinctively protect him. The excitement on Bo’s face when he grasps a fact has eluded him. We survive because we don’t know any other way.
Please join us to celebrate one of our successes on Friday, February 18, 2011 at 11:00 at the Food Lion on Sheerer’s Road in Mooresville, NC. Come by and say hi, show some support for Bo and a great charity, Canine Assistants. We really hope to see you there!