This page is being written to allow people who do not
have special needs child to understand what it means to
have a special child.
Both of our children are special
-this story is about Christian
|Christian at the
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A Day In The Life Of Christian ( updated 10 / 14 / 05 )
A little history: 13 years old, seizure disorder, global developmental delays, extremely happy and outgoing and very handsome (not just because
I'm his father). Justin, his only sibling is 10. The two boys love each other and have a very special bond --Justin is not only very concerned when
his brother has a seizure, he is extremely helpful. Justin is a very bright and cheerful young man who is at times an adult trapped in a child's body
--unfortunately we sometimes forget he is ten and expect more from him then we should-- we are working on this. We count our blessings
EVERY day for our boys, we love them with all our might and would not change a thing about them -well, the only thing we would change are
Christian's seizures -those we could do without. His developmental delays are part of him and his personality and those are so endearing we
wouldn't trade those for anything -rest assured I'm serious -we would not trade his delays because that would change the very heart of who he is.
This site has evolved over the years and it is amazing how much has changed for all of us in a 24 hours period (this is a day in the life), but
alas the more things change... the more they stay the same. Christian still has routines, still has fetishes, still loves hockey but now has a
Vagal Nerve Stimulator implant (10/13/04) which has dramatically changed our lives. We reduced and dropped some of his medications,
and he has started using facilitated communication at school. This is a very controlversial form of learning that must be seen and witnessed
to believe. We are not totally convined it will work for him but the intial results are amazing. The proof is not only in him but in seening
other children at his school excel using this form of communication.
It used to be that a normal day started at 7:00 am when, if Christian has not woken up by himself, we
had to wake him --for his first set of meds. This was not without anxiety on our part. There is always
the possibility when you wake someone with a seizure disorder that they will have a seizure. We
would wake him slowly -over 4 or 5 minutes. Once sitting up we talk to him and ask him if he had a
"good night, night" -and proceeded to med him with 5 ml of ValProic Acid, 200 mg of Neurontin and 25
mg of Lamictal.
That was then and this is now. We still have to wake him... but at 6:15. We still ask him if he had a
good nighht and we still medicate him: 4 ml of ValProic Acid and.125 mg of Klonopin. Any anxiety
about waking him has long sionce dissapeard. We have never seens
Over the past few years his routine has changed from what was described above to, waking us up 6
out of 7 mornings and requesting to play EA-Sports NHL 2002 on the computer or PS2. This changed
again this past summer (2002) while camping, without a computer present.
Today, he wakes up himself about half the time and the other half we must wake him. He does not
like to be woken up and he tends to be very irritable for the first 1-2 minutes. After that he is usually
very happy and talkative. We either read a book or move to the livingroom where he will either play
NHL 2002 or watch a morning television show. We then give him his morning meds -usually around
By the time he finishes his meds he is usually begging for his banana bread. How do we know its
banana bread? Easy; because it's always banana bread --We make 2 breads every 10 days and
have for over 10 years! Either Wendy or I make his breakfast while the other plays hockey with him
while watching Sesame St., a taped hockey game or a movie like Grease, The Mighty Ducks, MVP or
George of Jungle. He also enjoys watching some of the 200+ music videos I have downloaded on
the computer. At this point Justin is usually also waking up and he wants to watch something else on
TV or play Lego Soccer or he too will watch the movie. To make this struggle a bit easier I have
installed a TV in the PC and one can watch the television and the other can watch television on the
computer with headphones. In this way one child is not banished to thebedroom to watch TV.
pieces of Bananna bread and some infant formula. He has a dairy intolerance so the Soy Formula is a substitute for milk and it gives him
his daily vitamines and minerals. He is not a big juice drinker so it's either this or water. He loves his "milk" as we call it. ($10.00 every 2.5 -
3 days). When done with breakfast he plays 10 minutes of hockey -as he always does- every day!! After breakfast either Wendy or I sit him on
the toilet while the other entertains Justin and tries to get the day going. Wendy has the backpacks all ready for school (obviously not in
summer) along with snacks and snowsuits (in Winter). Their clothes are ready to get dressed. Having my own business has its advantages
-I can drive everyone to school. By 7:30 Christian is dressed had his teeth brushed, face washed and hair combed. Before leaving
Christian gets his second dose of meds: 3 ml of Zantec and 1.5 ml of Carnitine. Now off to school.
A typcial day at school: (as written to us from one of his two full-time aides at school):
Hi, we had a nice morning. He ate snack, bathroom then a short class meeting, we got to share the books the kids made. He did
computer with Alan and PT, plus stretching with Carol. Lunch -he ate 2 hamburges (without roll), cooked carrots ; corn, pickles a little bit of
brownie and juice. Went to the nurse, had meds (200mg Neurontin, 35mg Lamictal and 5 ml Valproic Acid at 12:45 pm); out to recess,
bathroom then music -a big hit was Glory Glory Hallelujah". They also read the story "Mole Music". Have agood night.
|Again, having my own business has its benefits --I usually pick everyone up at school.
Christian is usually pretty tuckered out from his day and sometimes takes a nap (he used
to nap everyday) on other days he will either play PS2, watch music videos and sing along
or play hockey, golf or basketball in the driveway or living-room. If he chooses to sleep,
Wendy or I must stay with him for the two minutes it usually takes for him to fall asleep
although he has had many days where he is VERY talkative and singing and his "falling
asleep" routine is 15-20 minutes. For the next 45 minutes (after he falls asleep) it is fairly
tense waiting for a seizure. A lot of his 200+ Partial or Simple Complex seizures (click to
view pictures) have been sleep related -either falling asleep or waking up). Wendy will
check on him 4 or 5 times in the next 45 minutes to make sure he is OK. He will sleep from
one and half to three hours. As he awakes we again are concerned with a seizure. We
usually spend the next 10-15 minutes sitting on his bed (Justin, Mommy and Christian or
Daddy if it's weekend) reading books or watching Justin entertain his brother by falling or
bumping into walls and pretending to get hurt. On occasion Justin pretends to be a dog and
Christian feeds him. About 5 minutes after waking, whether he slept 90 minutes or 3 hours
he asks for food. He wants food and pretty much the time between waking and when he
eats is not pleasant. He can be quite irritable and persistent.
We eat between 5 and 6 and if he wants to eat at 4, it's a problem. We have tried offering a
snack but that really ticks him off -he wants REAL food. He will usually play hockey or
watch PBS, in non-winter months he will usually be playing hockey outside with his brother
and many neighborhood kids. Our yard is the play yard for the neighborhood and we
usually have between 4 and ?6 kids here playing. Christian and Justin love that and we love
having our boys here. We have 20+ hockey sticks and plenty of soccer balls, dodge balls,
baseball bats, badminton rackets, golf clubs and sidewalk chalk for all to enjoy. If in doubt
our garage has it.
Dinner -hot dog, meat balls, sweet italian suasage in Ragu sauce, chicken pie, hamburgers
with chips or french fries and of course his milk. He loves to eat. His variety was never great
but his quantity made up for that then oddly after starting Lamicatl in May 2002 he started
eating almost everything on the table. He eats a great variety now. Dinner can take 30 minutes
as he takes his time and enjoys every minute. After dinner he, um, plays... hockey. We either
put a tape on or Justin he and dad play livingroom hockey. Our baseboards have seen much
better days -we have puck marks three or four feet off the ground. Our hard wood floor will
need serious work when the boys get over hockey -but you know- their only young once!
7:00 pm -meds. (7.5 ml ValProic, 200 mg Neurontin and 35 mg Lamictal --oh yeah I forgot, we
don't just give him the pills or capsules, with crush his Lamictal and open his Neurontin and
mix those two with his ValProic (liquid). Then add a little water and give him the meds with a
medicine dropper -it's quite and art). Then we either go shopping or play whatever we can do.
In Winter, if it's Wed. or Sat. we hit the high school hockey game, on Friday's we either hit the
grade school Basketball games or if there is one -a Norwich University Hockey Game (we go
to all of them). On other days we hit whatever music or gym event might be happening at their
school, whether they are in it or not. Community participation is a great lesson to learn and the
boy's love going. We try and get homework in including some drawing, cutting, counting or
reading. Justin usually finishes his homework by 7:00 and goes to bed at 8:00 to 9:00 unless
an event goes overtime. We all do the "Our Father" together before bed. Christian is up at
least until 9:00 usually 9:30. on days he naps and otherwise 8:00- 8:30. He takes his last
meds at between 8:00-8:30; 1.5 ml Carnitine and 3 ml Zantec. Oddly between roughly 8:00
and 9:30 when he goes to bed is his happiest time. He speaks better and more clearly then
any other time of the day. It's really strange but sometimes we hate to have him go to sleep
because he is quite an entertainer.
Night time: Between going to bed and about 11:00 we check him 4 or 5 times. After that we
check him about hourly give or take. Wendy goes to bed between 10:00 and 11:30 and I go to
bed between 1:30 and 2:30. Between 1:30 and 6:00 when we get up we check him (either
Wendy or me) on average once an hour. Sometimes more, some-times less. We have a baby
monitor and when we hear motion we check him. It makes for very interrupted sleep but after
12 years our bodies are used to it (although if we look tired maybe you'll understand why).
Think we are overreacting? See "The Conclusion" for some of his seizure / medical
statistics. So what did you do today?
Christian @ CHAD, Children's Hospital At
Dartmouth Hictcock Medical Center. We go
here to see his Neurologist. 1/9/01