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Nicky van de Grift



March 29, 2009

Nicky van de Grift born July 3, 1990 in Naarden, The Netherlands. It's A BOY !

Nicky was born with an extra piece of chromosome number 10. What this means the doctors could not tell us. What we have find out ourselves over the years, I will describe below:

Physical: Internaly everything is OK! External: Contractures of hands and feet, he operated on that when he was 5 years old. A lot of speckles on his lenses in both eyes, his right eye operated when he was 12 and got a clean lens. This is now his good eye. If Nicky through puberty his left eye can be operated. But he can actually see everything very well.

Nicky is autistic .. This has never been told by someone at all, We always had a feeling that it was so but we realy have found that out when the teacher at school from Nicky gave us a book of Colette de Bruin (februari 2009) it is called "High five" in dutch: "Geef me de vijf" we have read that and then we knew it was worse then we always thought, because it completely describes Nicky. Give more structure and be clear! If we are not he stays in it and asks each time the same and keeps repeating him self. He also has days that he keeps talking about the same things especially about cd's, record videos and dvd's ect. He talks and asks at home about pregnancy (March 2009) This is for him very fascinating. He has seen this on a DVD and aslo he watch old video tape about my pregnancy when I was pregnant of him. It is difficult for him to talk about something else if he fascinated by something.

He is a very affectionate guy who likes to cling and claim you. At home he likes to sit on youre lap, but we try to limit it only when he is in pajamas. If he sits beside us, he likes to sit arm in arm or a arm around your shoulder. Only kisses on the cheek and not your mouth Nicky! Dont touch everyone Nicky! Not everyone likes that!

Nicky always been thin and therefore always cold. He dont feel that, because his pain threshold is very high. So with blue cold fingers he says that he is not cold! Pretty dangerous, for him because you're faster sick that way. In winter he often has thermal underwear and a warm sweater col.

You wont see him cry often, When he does... Well than there is REALLY something going on.

He also has little pigment in his DNA. He has Snow-white hair and also a very sensitive skin. He will burned Alive in the sun, so always needs sunblock when its sunny. He has blue eyes.

He has his swim diploma A.

If he finds something exciting he'll : "nose rub" as we call it. This is almost always accompanied with, things that spins! such as Washing machine, Videos, DVDs, CDs! Tapes, Wheels from Wheelchairs etc, and most recently computer harddisks for he knows a little round disk is in there. Actually everything thats spinning.

The idea that something is being charged is also exciting for him. Mobiles on the charger and battery charger. He also has a thing with buttons. Preferably he sits all day at his button of his pants and and turns it around with the result that the button eventualy comes off. To prevent this, we made a necklace. A Keycoard with some buttons so that keep hims off from the buttons off his clothes. When he was little he do this whit his diaper, he always picked at his diaper with the result his bedroom was full of cotton wool from his diaper. He must have something to fiddle with.

Nicky is potty trained day en night but once something exciting in his life has or will happen, he'll wet the bed. This will take 1 or 2 nights and then its over. I let him go to the toilet when he goes to bed and at 23.00, with this system he'll get dry through the night.

He eats and drinks a lot and everything! Milk and water are his favorite and tea and coffee with some cold water. He makes his own bread and when he eats its very unappetizing to see. Sorry, we have tryed it all! Eating with knife and York, goes fine.

He has nothing with animals ! Dogs and cats etc. He is even a little scared!

He can not read, write or count. TV and Dutch music is his passion!

He has an older sister (Jaimy) 21 years who no longer lives at home. We own an recreation park in Wageningen. www.wielerbaan.nl (since 2005) and Jaimy lives there for about 2.5 years. Nicky and Jaimy are crazy about each other. His younger brother Roby is 16 years old and lives with us, those two are like water and fire. (Dutch term) they can't get allong verry well with each other. Haha. Nicky is very happy at the recreation park and likes to help with chores around the caravan / house / reception / canteen. He usualy is very proud of him self when he does chores!

The community has given him an trycicle. A large 3-wheeler and it is on the recreation park. So he rides all day on this good friend. We have made a large bucket on the back off the bicycle and so he go from camper to camper and retrieves paper, garbage bags, etc. In short these are his chores. Can also breathlessly watching to the garbage men who empty the large containers at the park. There is a regular guest (Mr. Goovers) he takes Nicky with him and they go cycling together. So really in the traffic.! Somewhere underway thay go drink a beer (alcohol free!) He finds this very exciting. Nicky talks with many guests on the park He also like to gaze at tents form afar while sitting on his bike, preferbly at someone in a wheelchaire.

Nicky will stayover 2 times a month in a house (care facility) ( Sherpa. Trapenberg, House Yellow) He likes staying here and prefers to have his room all to him self. Nicky does not need medication. He sleeps well and almost round the clock. He need a lot of sleep. Going to bed at 8 a'clock. In the weekends an hour later.

At home he has his own room with TV and a video, dvd recorder and recently a computer. He likes to be there. It is the old room of his sister.

Nicky is a happy and friendly boy who not care allot about people of his own age but more with adults and teachers and people with leadership. He likes to talk and ask a lot.

If Nicky would be angry it is difficult for him to calm down ( this does not happen allot) For example, if you ask him, Will you go to the bathroom? Then he might says: I just have, if you would ask it again just to be sure ... he might get upset and express himself verbaly and hel'l walk away and scream and gets flushed. You can get away that mood by saying to him: Hey dude? you're my friend right? Come here man... put arms around him and say You're a big guy who listens to his friend right ????? Come on! He immediately melt whit this sweet words and do what you ask. Suddenly he sees in his fault and he will make his excuse.

Nicky need a lot of help. especially in personal care. When showering, he'll just stand there. So shampoo and toothpaste is under supervision. He'll dress him self, but under supervision. He can't put his shirt in his pants and pull socks with heel to top. His belt he can do himself. This is actually the great difficulty with Nicky he still need a lot of help. He will always say YES, if you ask for example: have you washed your hair? You come and check then you see the whole bottle of shampoo in his hair not washed out Yes he does it, but can not (yet) do it on his own.

Youll need to guid en encourage him in everything. He is quite a bit lazy with things he does not want to do. But if he has something in his head, he is certainly not lazy anymore haha

In short: he is a lovely affectionate enthusiastic and friendly guy, who likes to help you with anything. ( also shopping )

--- Christiene and Jaimy (Nicky's sister)

Name Nicky van de Grift
Date of Birth Jul 1990
Gender Male
Diagnosis Distal 10q
Parents Christiene van de Grift
City Bussum, Netherlands
e-mail stiene_girl[at]hotmail[dot]com (change [at] to "@")


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