Plinth Blog Special Needs Parenting

31Oct/122

Carving Pumkins

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 30 of 31 for 21.

Alice's Pumpkin

When we started out doing pumpkins for Hallowe'en, we started easy: poster paints and pumpkins.  Yes, the pumpkins ended up looking like a work by Jackson Pollock, but they were decorated.  This year and last year, we've done carving and here's how I've made it happen.  You will need:

  • Pumpkins
  • Dark crayon
  • Large spoon
  • Sabre saw or a rotary/spiral cutter or a Dremel tool or a sharp serrated knife like a steak knife

Draw a line for the cut-out on top with the crayon.  Have your child draw the face with crayon.  You will cut out the top with the saw.  I want to say that there are pumpkin carving kits, but they're not worth it.  Instead, I like using the power tools for cutting.  Why?  They go through the pumpkin without getting caught like knives and make pretty quick work of the job.  I have a sabre saw.  To get a cut started, you can push the blade right through the pumpkin.  A Dremel tool will work with the right blade, but most of the blades are better for carving rather than cutting.

Once the top is off, if your child can do all the scraping, go for it.  Alice isn't really there, so I scraped the goo down to the bottom then gave Alice the spoon to clean it out.  She loved that and did it deftly.  Then I cut out the face, but left the pieces in place and had her taken them out.  Then I gave her a paper towel to clean up the outside of the pumpkin.  She was very happy with this level of involvement.  Both kids really like saying, "ewwwww!" while pulling out goo.

Jacks O'Lantern

30Oct/120

Having a Child with Down Syndrome, Part XL: Take a Lot of Pictures

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 29 of 31 for 21.

I cannot stress this enough.  Take pictures.  Take a lot of pictures.  Digital cameras are cheap.  Find one you like that - I always try to find one that has a "Kids and Pets" setting.  If you go to a brick and mortar store, bring a memory card and your child a try them out.  A few hints: avoid using a flash indoors - turn on lights instead.  Instead, save the flash for outdoors on sunny days - it will remove shadows under eyes.  Try to keep the light in front of your subject instead of behind.  Above all, the camera you have with you is the camera with which you will take pictures (corollary: If you don't bring a camera, you won't get pictures).  Here's a decent enough guide.

I try to look for getting good family pictures.  Alice loves people and she especially loves her family and that comes through.

Make sure that you back up your pictures if you keep them digitally (and who doesn't?) and consider using a good photo sharing site for fr

iends and family.  I like flickr, but some people use picasa and other services.

 Joking
Waiting Impatiently

Walking with Gabe

Mugging With Daddy 3

Ferris Wheel

Group Shot

29Oct/120

Having a Child with Down Syndrome, Part XXXIX: Looking Ahead

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 28 of 31 for 21.

As parents of children with disabilities, we're told that we need to look ahead,  have a vision, prepare for what is to become.  So we've looked into estate planning, tried to look forward in her education, try to build independence and set up circumstances for success.  And still, how are we supposed to plan for what's to come?  Will Alice live independently?  Will she go to college?  Will she have a job?

Alice

We push for independence.  We try to set up circumstances for her to take care of herself, and then we have days like today.  Whether it was phase of the moon, less sleep than she needed, growth spurt, or whatever.  Today was a near-perfect storm of Alice missing on so many fronts.  The first sign was her walking naked into her brother's room, then taking a good solid half hour to get dressed - something she can usually do in 10.  She had trouble getting her teeth brushed, couldn't keep her hands off other people's property, magically forgot how to say the 'g' in yogurt (reverting to 'yoyurt'), reading 'sauce' as 'spice', and a number of behavioral issues.  And after days like this, I wonder how I'm supposed to plan for tomorrow, let alone 15 years hence.

Hopefully, this is just a blip on the radar and we move ahead tomorrow and the next day and the next.

I had a vision today.  Stuart had a hockey game and I was sitting in the stands with Evie and Alice watching the game and watching Alice cheering Stuart on.  Would Stuart continue to play?  Would Alice continue to watch and cheer him on?  Would Alice still danc ballet and would Stuart come to the performances.  I hope so.

28Oct/120

Achievement Unlocked: Sewed a Dress

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 27 of 31 for 21.

Alice decided that she wanted to be Princess Merida this year for Hallowe'en. Did I mention that she likes princesses? I did? Good.

 

About a month ago, we went through a fabric store looking at patterns and material and I came home with an armload of fabric and notions and a pattern (pro-tip: inventory the sewing machine needles first) and began altering the pattern.  Have I mentioned that people with Down syndrome can be unusually proportioned?  I did?  Good.

It was an unusual experience.  Evie helped me get the pattern right for the bodice and after that, everything more or less fell into place.  There were some interesting hitches.  I measured her arms twice and the sleeves still went well past her fingers.  So I chalked the new line onto the sleeves (off by three inches!) and rehemmed them and now they fit perfectly until she moved around, then they were two inches too short.  Oh well.

Alice as Merida

I could nitpick forever, but honestly Alice was just so happy to put on the wimple and the dress.  We went to a party and she liked telling people that she was Merida.

27Oct/122

Having a Child with Down Syndrome, Part XXXVIII: The Disney Machine

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 26 of 31 for 21.

If you have a any child, you're going to be exposed to the machinery of Disney.  With Alice, it's even more so.  She got hooked into princesses and has never really let go.  This can be frustrating at times because most of her peers are past that stage by and large.  Still, there are some big upsides too.
Alice and Cinderella
for example, Alice loves to read and reread books about princesses.  I knew that when we went to see Brave that I could take Alice to a book store right after and find a book that was at or slightly above her level based on Brave and that Alice would have automatic incentive to try to read.  Once we read through the book, I picked a set of words that she was interested in and had some trouble reading and I wrote them on 3x5 cards and tucked them in the book and practiced them for sight words.  She quickly added "highlands" "archery", and "Mor'du to her sight words.  Making reading authentic and personal is a key element to literacy and that is a big aid in getting to independence.

26Oct/120

Having a Child with Down Syndrome, Part XXXVII: More Sibling Issues

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 25 of 31 for 21.
Sharing a Drink

"Dad," Stuart started while I was bringing him home this week, "the next time I lose an eyelash, I'm going to wish that Alice doesn't have that thing."  "Which thing is that, Stuart?" "You know, that thing that she has." "Which one?" "You know - her stroke and her Down syndrome.  The next time I have an eyelash come out, I'm going to wish that she never had her stroke and didn't have Down syndrome."

I probed a little bit and asked him how Alice would be different if he made that wish. "Well, dad, she'd be able to run and play tag with me and play other games."

Several things stood out to me.  First, he's a very deep thinker (which I knew).  Second, he led with the stroke and not Down syndrome.  Third, he feels very lonely in terms of his friends.  I worry about that, but am confident that he will develop deeper friendships over time.

Stuart, we love Alice no matter what, just like we love you and Alice loves you too.  Keep thinking the deep thoughts.

25Oct/120

Having a Child with Down Syndrome, Part XXVI: One on One Time

 

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 24 of 31 for 21.

 

 

Lunch Date with Alice

At one point, before I was a parent, I worked with a man who had 5 kids.  I listened a lot to his stories of how he managed his family.  One thing I remembered was that he tried to schedule dates with his kids one at a time.  The child would select an event and they would follow through.  I've tried to adopt that with my kids, too.  For Stuart we'll go get haircuts together and usually stop by a donut shop for breakfast.  For Alice, I'll take her to get her nails painted sometimes.  Other times, we'll have lunch at Taco Bell.  This is a guilty pleasure for me.  I know a lot of people don't care for it, but I'm content to indulge every now and then.  Alice loves the crunchy tacos there which is a terrific thing since they don't have wheat products in them (as far as I know).  This is also convenient as a thing that only we share since neither her brother nor her mother care for Taco Bell.  The nail painting was also a surprise.  I think we were out at the local mall for something and were early and had some time to kill, so I took her to get her nails painted.  She loves the attention and the touch from the manicurist and of course the social aspects. It doesn't hurt that if you ask nicely, the manicurist will paint a little flower on one nail on each hand.

I recall the first trip there, the manicurist asked Alice what color paint she wanted. "Red."  That brought many titters from the staff since there are somewhere around 837 shades of red on display.  Nonetheless, Alice confidently and without hesitation selects one and passes it over, ready to sit down and get a trim and ask her usual questions ("'scuse me - what ya doin'?") or offering helpful tips ("only paint nails - not fingers.").  Oddly enough, Alice insists that she's getting her nails painted for her mother and looks forward to showing them off to her when we get home.

I had never imagined that I would be taking my daughter to a nail or hair salon, but that and much more has happened Alice entered my life.

24Oct/120

Having a Child with Down Syndrome, Part XXXV: No User Manual Supplied

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 23 of 31 for 21.

I've played trumpet since I was in fourth grade.  Since I was in kindergarten, I always wanted to play trumpet.  There was just one problem - I had horrible stage fright.  Whenever I played any solo parts, my hands shook badly.  I was told I had great vibrato.  If only it was intentional. When I got to college, I had a particularly bad pair of semesters and I was 1 credit shy of being kicked out - hard to imagine, isn't it?  It's true. I heard about a big band on campus that was student run.  If you joined it, you could earn a single credit, which was all I needed to keep myself in good standing.  I'd heard that they needed a trumpet, so I talked to the director who told me the second part was open.  He asked if I knew how to  improvise.  I lied.  I said yes.  In big band parts, they don't write the solos out (usually).  Instead, they just write the chord changes into your part - here ya go.  So I did two things.  First, I learned how to improvise by just faking it.  Second, I conquered my stage fright.  After you play 30-40 solos in a three set gig, the stage fright goes away.

Bus Soon

The same thing holds true with parenting.  I read what I can.  I watch other parents. I try to observe and think about what I'm doing.  When it comes down to it, I don't know what the hell I'm doing.  With any kid, there's no user manual - maybe you can find a Chilton's for your model, but when you have a child with disabilities, there won't be a Chilton's because you never know what will work or won't work.  You try stuff, see what works and try it again.  if it doesn't work try to avoid it in the future.  It doesn't always work. I'm making tons of mistakes and I'm trying to keep a running tally of how much that's going to cost in therapy.

It touches me when my dad leaves me comments about being a good dad myself (thanks, dad!) since I don't know what the hell I'm doing.

So what then?  Improvise with confidence and be ready to say "I'm sorry."

23Oct/120

Girl in the House

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 22 of 31 for 21.

I grew up in a family of boys.  And not just boys, but the kind of boys who got into everything.  I think I always wanted to have a girl and Alice has proved without a doubt that she is most certainly a girl, complete with occasional fits of pre-teen stubbornness.  When Alice was very little, I often set out clothes for her and helped her get dressed.  I grew accustomed to having my choices vetoed by either Evie or by Alice.  As she grew in independence, I stopped picking clothes out for her.
Alice on the Rocks
Sometimes her choices aren't weather appropriate, but she really gets into dressing like a girl and generally speaking makes great color choices.  She has a knack for picking out clothes that really make her eyes pop.
Me and My Jersey

I can't help but be amazed.  I can't do any better.

22Oct/122

A Nice Afternoon

Copyright © 2012 Stephen Hawley, all rights reserved.

Day 21 of 31 for 21.

I had a community band concert today at the senior center.  Since Stuart had a hockey game, I took Alice with me to the concert.  This is always a little dicey since Alice is prone to wander off and find someone interesting to talk to.  I set her expectations and appropriate reward. She sat next to me while I set up and did a few warm up exercises and then I invited her to go find a seat in the audience.

She did and talked to a few people around her and watched the concert.  She loved the music and every now and again liked to mimic the conductor.

I talked with her after and asked what she liked the most and she said it was the music from Oklahoma.  This was a surprise because I figured she would really like the Disney medley!  No, My girl likes her musicals.