A Day in the Life (World Down syndrome Day blog hop)

A Day in the Life

Our life is not typical.  Not even close.  Even before Jack Jack came into our lives with his extra chromosome, people would say, if they were being polite, “interesting” and if they were being honest would say, “Extreme and weird.”

And that is just fine with us.  Living in Afghanistan, with a young family, is our normal.  And this year, my two worlds, Afghanistan and Down syndrome come together in beautiful way.  March 21 is Naw Roz, or Persian New Year.  It is a glorious time of year right now, spring is in slow, full bloom and it feels right to celebrate the New Year now when things really are new and growing.  3/21 is also World Down Syndrome Day, chosen because the numbers of the date represent the third chromosome on the 21^st – trisomy 21/Down syndrome.

Our location is different from most of you reading this.  You might find it hard to imagine how our days look when what you see is tanks, shrouded women and poppy fields.  I’d like to give you a different glimpse and show you what a day in our life is like.

Loving on his bunny, Chestnut

Mr. Incredible and I are up at 6:30.  If we’ve had electricity in the night, there is hot water in the tank for a shower.  In the summer, doesn’t matter if there is electricity because the water tank on the roof heats up all on its own.  Mr. Incredible is in charge of breakfast.  This is because he wakes up verrrryyy sllowwly and it was decided years ago, that for the sake of our marriage he should spend some time alone in the kitchen mumbling at pots of boiling water, rather than trying to deal with kids who cannot find their socks.

I get the kids up at 7:00 and take Jack Jack to the potty.  He has been staying dry at night for a while now, so this is a great move forward in potty training.  A great thing about our schedule is we don’t have to hurry up to catch a bus or start school exactly on time, so I’ve been taking a longer time with him in the mornings so he can get himself dressed.  He struggles a lot with hand coordination, so getting a shirt on over his own head can be frustrating and he’d rather just let me do it.   Some days we preserver and he does most of it by himself.  The kids make their beds and pick up their rooms and we all eat breakfast together.

We start home school around 8:30ish… sometimes more like 9:00ish… If we start at 8:30 we do a version of “circle time” that Violet and Dash think they are too old for, but love it anyway.  We sing songs, do the calendar, Bible memory verse and then they can color or draw until Dad comes to do math.  While the big kids do math, Jack Jack and I have time together.  This is his focused school time, but it can range all over the place.  Sometimes I do shopping lists and he plays on the iPad.  Sometimes he follows our house helper, his beloved “Khala jan” around helping her vacuum and dust.  I try to make sure he does his sight word flash cards, some pre-writing work with the white board or crayons and paper and we do a few speech therapy drills.  His speech and reading skills are a whole other post for another day, but I will say that I’m pleased with what we’ve been doing, but I think we’ve got some pretty big holes that need addressed.

Looking through his favorite book — The Beginners’ Bible

After an hour of math we all take a break outside.  They all have chores to do too and Jack Jack’s is to help feed the rabbits and make sure all the shoes are lined up neatly in the entry hall.  Throughout the day he is called on to help set or clear the table, hang up laundry and pick up any toy messes that he makes.

Jack Jack hangs out in the classroom for the rest of the morning.  Often he sits on my lap at my desk and we do handwriting or education apps Facebook and Pinterest on the iPad while Violet and Dash work on language arts assignments.  When one of them is done, they will play games, do flash cards or read stories with him.  At 11:00 he is allowed an Elmo or Curious George DVD.  He is only allowed them at this time of day, but that doesn’t stop him for asking for “Emmo George, Emmo George” all.day.long.  We have lunch together – often Mr. Incredible is home in the afternoons and then leaves for his teaching job in the evening.  We do Dari lessons, quiet reading and bits and pieces of school that didn’t get done in the morning and finish up the school day with a snack and a Read A Loud book at 3:00.

The favorite time of day is 4:00 when our team mate kids are finished with their day and all seven kids can play together, running between our houses, which are connected by a wall and a gate between the yards.  Jack Jack is a full member of this little tribe.  He is included in the games with the bigger kids, but also sits and plays baby dolls with Joy, the youngest of the group.  Often Afghan neighbor kids are around too and have gotten good at understanding his sign language and will push him on the swing or chase him around.  If the big kids have run off and are too fast for him, he is very happy to find his “Koko”, which means uncle.  Koko works in our yard as a guard, gardener, handy man and gate keeper.  Jack Jack is happiest when he’s helping to sweep the dust or shovel the snow, polish the motorcycles or water the grass.

So glad to have this playground in our front yard

Violet and Dash have different days where they are assigned to help in the kitchen, and Jack Jack is usually included, unless I’m seeing the big kids needing some one on one time with me.  We do some baking in the afternoon and start dinner around 4:30 or 5:00.  Jack Jack loves to stir, measure and pour and of course, lick the spoon when we are done.

how to use a mixer when there is no electricity: plug into an inverter that runs off of car batteries

Again, showers for the kids depend on how much hot water we’ve ended up with by the end of the day.  I clear up from dinner and the kids get ready for bed.  Jack Jack gets a story or two that he picks out and a Bible story from his “Jesus Story Book”.  Then he snuggles with me and we listen as Daddy reads out loud from the Chronicles of Narnia.  Jack Jack falls asleep before the story is finished and we carry him to bed at 8:00, ready to do it all again tomorrow.

So, what do you think?  Is it like you pictured?  There are days I truly mourn the lack of speech therapists, special education teachers and great resources that I see other kids with Down syndrome in America getting.  I worry if I’m doing enough or good enough.  Every day I miss my family and our friends who helped and held us up those years when we didn’t know how we would ever have both Jack Jack and Afghanistan.  But, in the balance we have this amazing, untypical, extraordinary life that is on a day to day basis the most normal kind of day anyone could have.

Happy World Down Syndrome Day!  Salay –naw tabrik boshan (happy new year)!

Click here to read more great blogs on a “Day in the Life” of someone with Down syndrome