Vand'n was so ready for school to start. I wish I could say the same for ME. I had (and still have) very mixed emotions about it all. As many other mom's of new kindergartners do. We made it through the first week of school and although it is only 3 hours long he did pretty good getting used to his new routine. He was exhausted by the time he got home just before noon and it was all he could do to stay awake while I made lunch so he could eat and have a rest. I learned after the 2nd day that I needed to have lunch started or done before I walked over to get him. Then it was NAP TIME! You would think that since he is so tired he would be excited to take a Nap but not the case "NAPS are for babies" that is what I am told. So we now have QUIET TIME!!! He goes into his been and reads books. He also informs me everyday "I am not going to sleep I am just going to read". He is out in under 3 min every time and he sleeps for 2-3 1/2 hours. The first day to school he told me he didn't get tired at all "I didn't let that narcolepsy get me, I just punched it right in the face".
As I think back to last year at this time... I had a few of the same emotions as I have now they are just stemming from the narcolepsy. I worried about him being so much taller than the other kids and getting made fun of (more as he gets older), now I worry that he will be made fun of for sleeping or looking silly and/or collapsing when he laughs. I worried about him being bored and loosing interest, now I worry about him getting bored and falling asleep. I worried about him not eating school lunch, now I still worry about him no eating but honestly I am so grateful he doesn't like food because many children/people with narcolepsy are very overweight.
I NEVER imagined that he would develop narcolepsy.
I NEVER worried that the flu shot/H1N1 would trigger narcolepsy.
I NEVER thought that we would have to meet with his teacher and the special education department discussing a 504 or an IEP for his schooling and his well-being.
I NEVER knew anyone who had narcolepsy (that I was aware of).
I NEVER knew we would be PUSHING FOR & HELPING SPREAD NARCOLEPSY AWARENESS.
I NEVER dreamed that we would meet so many or even that there were other families dealing with narcolepsy in their young children.
I have visited with so many mom's about their children's schooling and quite honestly have been sickened by their stories of how their children are treated by students and teachers. How horribly mistaken they are for saying there was nothing wrong with these kids and that they were just lazy, unmotivated, and needed to get more sleep at night. A few parents even told me that their child's school refused to let them have a scheduled nap (even after having a Dr's. note) because there was simply just not enough time. Some that were allowed naps had to do so at the back of the class with no pillow or blanket and at the display of the class. One story saddened me to no end...this boy was not allowed to have a nap and when he got tired the teacher would make him stand and walk (which is probably OK to do before they get tired) when he did fall asleep sitting at his desk he would awake with marks of pen and marker all over him.
We have been so very fortunate so far with school. We set up an appointment with the Special Ed Department and his teacher. We presented them with brochures and information sheets and we even showed them a few of Vand'n's cataplexy videos so that they could see what it looked like and to make sure they knew that he would be OK and that he wasn't having a seizure. Also to make sure that someone would be in charge of making sure that Van wasn't left sleeping somewhere if there was a fire or other emergency. Everyone has been very curious and eager to learn and help him. He has a great teacher and an aid in his class. We will meet again in a month or 2 to put together a more formal plan when he see how his going to do.
WE PRAY FOR HELP IN SPREADING AWARENESS OF NARCOLEPSY AND FOR THE FAMILIES AFFECTED BY IT. ALSO FOR STRENGTH FOR THOSE WHO ARE SUFFERING BECAUSE OF THE LACK AWARENESS IN THEIR COMMUNITY AND OTHERS THEY ARE IN CONTACT WITH.
WE WILL CONTINUE TO PRAY FOR A CURE FOR NARCOLEPSY AND SO MANY OTHER DISORDERS AND ILLNESSES.
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