Wednesday, November 29, 2006

true story, as heard at a presentation yesterday

The mom of a child with a disability starts to look into finding a school for her son for Grade 1.

She meets with the principal of their neighbourhood Catholic school.

Well, you should go to a district site (a 'special ed' segregated program) . THEY should be with THEIR OWN KIND.

Mom, surprisingly articulate after the THEY comment, and recognizing she's at a Catholic school:
So you are telling me when Jesus said, 'let all the little children come to me', he meant - 'I mean THAT child, but NOT THAT ONE?'

Bravo, Mom. Well said...

Thursday, November 09, 2006

November is National Epilepsy Awareness Month!

November is National Epilepsy Awareness Month, and being that seizures are a common thing for many special needs children regardless of their diagnosis, I thought I'd share with you some facts about Epilepsy and some First Aid tips for someone having a seizure. Remember, purple is the designated color for Epilpesy Awareness Month, so please try to wear purple often during November.

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My daughter Jenelle has many different special needs, the cause of which remains undiagnosed. She also suffers from uncontrolled seizures in the form of Lennox Gastaut Syndrome.

Facts about epilepsy:

  • Epilepsy is one of the most common disorders of the nervous system.
  • It affects people of all ages, races, and ethnic backgrounds.
  • More than 2.7 million Americans of all ages are living with epilepsy.
  • Every year, 181,000 Americans will develop seizures and epilepsy for the first time.
  • Epilepsy can develop at any time of life, especially in early childhood and old age.

Facts about epilepsy in Children:

Childhood epilepsy currently affects more than 300,000 American children under the age of 14.
  • Epilepsy may be time limited or long term. Early recognition and treatment are keys to the best possible outcome.
  • The epilepsy may be associated with serious, difficult-to-treat syndromes, including infantile spasms, Lennox-Gastaut syndrome, genetically related conditions, and developmental disorders.
  • Social impact in childhood is often severe, producing isolation and loss of self esteem.
  • Our Jenelle:

    Well, I have a whole blog about my special girl so I'll be brief. Three years ago, we were told that if we could not control Jenelle's seizures, she would not live past age 5. Like any parent, we vowed that day to fight this monster that threatened to take our child. The fight has been long and has had many ups and downs, and it continues today.

    Jenelle just turned 4 a few weeks ago, and she is doing better than we ever imagined after gaining significant seizure control in July 2005. In fact, last weekend she pulled herself up to stand! She still has daily seizures, but not as many as before. We are very hopeful that Jenelle will have a long and active life, and we are hopeful that she will overcome this devastating condition.

    Recently I read an article at the National Epilepsy Foundation website about actor Greg Grunberg (Alias and Heroes) and how his son suffers from epilepsy. The article is very interesting, and Greg really makes you understand what it is like to be a parent to a child with epilepsy. I highly recommend reading the article for a better idea on how epilepsy can affect the whole family. You can find it here.

    Seizure First Aid:

    Witnessing a seizure is frightening. Witnessing your child seizing is indescribable. Prior to our learning that Jenelle was having seizures, we had absolutely no experience with seizures or first aid for seizures. Now we are old pros and it is really something you just learn by fire so to speak. Often one of the common things I'm asked by many people is "What do I do if I see someone having a seizure?" The hardest thing to do is remain calm, but it is the best and first thing you should do. Make sure the person seizing is comfortable and not hurting themselves (i.e. if they are repeatedly hitting their head on concrete - move them!) Start timing the seizure and wait it out until the seizure stops naturally on its own. If the seizure goes longer than 5 minutes, call 911. And its is just as simple as that!

    Here are some "Grand Mal First Aid" seizure things to do:

    Keep calm and reassure other people who may be nearby.
  • Don't hold the person down or try to stop his movements.
  • Time the seizure with your watch.
  • Clear the area around the person of anything hard or sharp.
  • Loosen ties or anything around the neck that may make breathing difficult.
  • Put something flat and soft, like a folded jacket, under the head.
  • Turn him or her gently onto one side. This will help keep the airway clear. Do not try to force the mouth open with any hard implement or with fingers. It is not true that a person having a seizure can swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
  • Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
  • Stay with the person until the seizure ends naturally.
  • Be friendly and reassuring as consciousness returns.
  • Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.
  • Links for more information:

    National Epilepsy Foundation

    More about my Daughter's Epilepsy - Lennox Gastaut Syndrome

    I think in order to get rid of the stigma associated with seizures, we need to advocate more about Epilepsy. Thank you for listening and letting me share this information with you!