What it is like living with a child with Down syndrom

I figured I would tell you about a typical day  in our home. So you can see what it is like living with a kid with Down syndrome. Just as a reference.
So if you google something and ended up here, here is the short version of us:

Vincent our first-born son, was born in May 2006. He was born with Down syndrome (trisomy 21). That does not mean he IS Down syndrome, Vince is Vince. He is an almost 5-year-old blond, blue-eyed Swedish-Austrian kid who has Down syndrome. That means he has one more chromosome than most others.
We live in Austria, Europe.
We have a second son, Edgar born in 2009. He is just what you guys would call ‘normal’, I prefer to call it ‘typical’.

Anyways, a typical day for us:

5.30-6.30: Edgar wakes up.

6.30-6.45: Edgar refuses to stay upstairs and heads down stairs and hangs outside Vincent’s door till he is loud enough and Vince wakes up.

6.45-7.20: morning kids’ TV and breakfast. Usually yoghurt and bread.

7.20-7.30: Vince gets dressed, I dress Edgar. Brushing teeth and putting jackets and shoes on (Vince alone) Edgar gets helped. Edgar is the 1-year-old, who does not have Down syndrome if you forgot.

7.30: we start the ca 100 m hike to the to the garage and try to get there without any kid getting caught in the neighbors toys laying outside or any dirt piles that needs to be examined, or and water puddles that needs to be jumped in.

7.45: drop of at Kindergarten. Vince is in a group like any other kid. He is one of 26 kids in this regular KiGa. Edgar is in the 0-3 year old group at the same place.

15.30: pick up from KiGa. Takes about 15 minutes to get the kids dressed and for them to stop wrestling each other and b put in their respective car seats.

15.50: get home. We play either outside, inside, park, play ground or go to friends houses. We go to the park or the playground too.

16.30-17: I cook and the kids play or wrestle each other. Most often the second option. When dinner is ready Vince eats everything, but his favorites are fish and spaghetti. Edgar usually picks in the food, pullls Vincent’s hair or with a perfect pincer grip throws food on the floor.

17.30: Bath time. Vince usually signals when Edgar should get out and he takes over the bath tub for another 15 minutes to play with his toys.

18.30 Edgar is ready for bed. He gets a bottle, a new diaper, we brush teeth and I put him down and he falls asleep on his own.

19.15-19.30: Vincent gets ready for bed. He sometimes brushes his teeth on his own and I brush after him, sometimes not. He goes to the bath room alone without any help, closed-door included, privacy please. (Vince is totally potty trained and has been with out nigh time diapers since he was 3 years and 2 months. He is dry in the day time since he was 2 years 10 months). He washes his hands and comes out. He picks a book and we go and read the book. After one book, lights are out. He drinks a zip of water. And says Night Night, shares a good night kiss.I walk out of the room, as I close the door he signs I love you and so do I. I close the door almost all the way, and he falls asleep on his own.

19.30-> Mom and dad time.

And so its starts over the next day.

That is it. I am not really sure what you were expecting. Our life is really not that special. It is not a reason to be afraid of us. Or Vincent. Or kids like him. Or Edgar for that matter.
If you have any questions, please leave a comment and I will try to answer them.

But really, the main thing? Kids are really just kids.

3 Responses

  1. Tycker det låter som en alldeles vanlig dag i vilken familj som helst. Bra skrivet, Kickan! Finns ju inget att “vara rädd för.” Tur man har kompisar som dig! Och nu ses vi snart, hoppas jag!

  2. I love, love, love this post!

    I can see Vince’s ‘independent’ streak already! Oh he’s gonna want things be done his way. Thankuverymuch!

    You have a lovely family and you’re a wonderful mommy!

    love love,
    Denise

  3. since Christina and I will have kids too in the future, I am happy that you mentioned the “mom & dad” time – so there is hope that even with two kids there is some time left for “each other” :-))

    Hope to see you soon at your place,
    Didy

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