Plinth Blog Special Needs Parenting

22Jun/151

Happy Father’s Day

I've been a father for 12 years now and they have been some of the most challenging 12 years of my life. I get compliments from people on my parenting, or more precisely, our parenting, since I'm just one member of a very tired team. Honestly, I don't know what to say other than "thanks?" I mean, I'm dead tired most of the time, run out of patience on a daily basis, make mistakes at least that often, question my choices, and consistently drop plates that I'm trying to desperately keep spinning.

I think that also my difficulty in accepting compliments is that I don't have a basis of comparison other than looking at what my Dad did for me and my brothers. He had quite the set of challenges of his own. Mike was rocketing off into new things like a evangelist-in-training. Pat was a quiet genius feeling pressures from Mike and me. I was the youngest, desperately seeking attention. Dad balanced the three of us and our needs, whether it was Mike in piano or scouting, Pat in computers or all-state chorus, or me with trumpet and soccer.  Of course it was never so simple because we each had so many other interests, some that overlapped and others that didn't.

And of course the endless dad jokes.

And now at this stage in our relationship, my dad is as supportive as ever of all of us and is a terrific listener.

How am I to judge?

If anything, I think I'm not patient enough, too tired, too frustrated, too quick to judge, and too selfish at times (usually from being too tired).

Today I took Alice to Kimball Farm for a father's day event sponsored by Mass D.A.D.S. and organized by Jeff Roback. It was a rainy day, but we still went and I met up with my friend Jeremy, who I had worked with about 16 years ago. We're finally in the same state, we should see each other, right? Alice and I went, Stuart declined, preferring to stay at home with E. Alice loved going on the bumper boats and playing in the arcade. I enjoyed catching up with Jeremy and meeting his family.

And now as the day winds down, all I can think is that if I am a good father, it is because I had a strong model. Thanks, Dad.

Filed under: Uncategorized 1 Comment
20Jun/150

Having a Child with Down Syndrome, Part LXXVIII: Fifth Grade Graduation

Copyright © 2015 Stephen Hawley, all rights reserved.

Alice had her 5th grade graduation today. In her school district, there is one Junior High School for the entire district, which is fed by four elementary schools after 5th grade, so this is a big transition and they celebrate it.

IMG_20150619_090313431_HDR

The gym filled up quickly with parents and all the kids and the fifth graders processed to Pomp and Circumstance. The principal gave separate speeches to the kids and then to the parents. Then she called each fifth grader up to get their certificates. Parents and kids cheered for each child.

IMG_20150619_093042790_HDRWhen Alice was called, the cheering got louder. A lot louder. Wow.

Alice got her certificate from her teacher and took her place proudly.

IMG_20150619_093048065

The class sang a song and then marched out.

IMG_20150619_093056161_HDRIMG_20150619_093103226

On the way out, I thanked her teachers and especially thanked the principal and gave her a big hug. She has built a great school and Alice has a great set of classmates. This is why inclusion is important.

Filed under: Uncategorized No Comments
14Jun/150

And If You Think It’s All Sunshine and Butterflies…

Copyright © 2015 Stephen Hawley, all rights reserved.

How to tell you have a tween in the house:

Alice turns on all the lights in the kitchen and dining room.
Me: Alice, would you please turn out the lights in the kitchen? There's nobody in there and it saves money.
Alice: No.
Me: Alice, there's nobody in the kitchen. Please turn out the lights, it saves money.
Alice: No.
Me: Alice, since there's nobody in the kitchen, don't you think it would be a good idea to turn the lights out?
Alice: Fine.
...
Alice: Butthead.

Timeoutularity ensues.

Later, Alice tries to get me to do an in-app purchase on her iPad.
Alice: Daddy, sign here.
Me: What is it?
Alice: Daddy, sign here.
Me: Nice try, Alice.

Alice fires up the music app, which can't be locked out, right in front of me.
Me: Alice, please give me your iPad. You have an iPad time out.
Alice: NO!
Me: Alice, were you using the music app?
Alice: No.
...
Alice: Yes.
Me: Ok, that's an iPad time out. If you behave nicely, then you'll get it back sooner. If you behave not nicely, then it will take longer.

Alice: Fine. I tell mommy about that. Mommy said, "never, ever do that again!"

E comes down stairs in perfect timing.

Me: E - did you say that Alice should never, ever get an iPad time out?

E: No.

Drama ensues, followed by timeoutularity.

Alice is now up in her room yelling at me that she's going to call the police and, "you're in trouble mister".

On another note, I've also trained her to respond to "Alice, drama?" with "Is this a dagger I see before me?"

Filed under: Uncategorized No Comments
14Jun/150

Having a Child with Down Syndrome, Part LXXVII: Scaffolding

Copyright © 2015 Stephen Hawley, all rights reserved.

When you have a child with cognitive or physical delays, scaffolding is the cornerstone of independence. Some kids you can just metaphorically throw off the dock and they'll swim (or they'll even throw themselves off the dock). Alice can't be thrown off the dock. Instead we use scaffolding. We try to thoughtfully prepare support that allows her to succeed at a task, then gradually tear the support down until she doesn't need it. This has been one of my long-term goals with shopping. Some day, I hope she will be able to shop for groceries all by herself. But rather than assume and leave this to chance, I've built up scaffolding to help her. Alice's main tool for shopping is her clipboard.

027I keep a stack of note cards in my car for making lists for her. This is scaffolding since writing her own lists is far beyond her planning and motor skills. I decided to move some of the big scaffolding out of the way and add in some smaller bits. I did this with technology. I bought an Epson receipt printer (this was a mistake - more on that later) and a Raspberry Pi with a WiFi adapter and set it up as an AirPrint server.

IMG_20150613_105944672_HDR

I chose the Epson printer because it has Linux drivers and and the Raspberry Pi is a Linux machine. Epson, however, provides only x86 or x64 CUPS drivers laptop/desktop machines and the Pi uses an ARM, so I needed source code, which Epson also does not provide, nor did they respond to my inquiry with anything more than a polite "sucks to be you". Fortunately, I guess, this type of task overlaps very heavily with my professional skills so I spent the equivalent of three work days worth of evenings and weekends writing my own CUPS driver, which is here if you want it.

First, I write out a list for her. Wait a minute! Don't I already do that? Yes, that hasn't changed. Yet.

IMG_20150613_105913413

Then Alice transcribes it into her iPad:

IMG_20150613_110319051

And then she prints it

IMG_20150613_111521643

And puts it into her clipboard, ready to go shopping.

IMG_20150613_111558120

Why is she using a clipboard? Why not just bring her iPad with you? Because when (not if) Alice drops the iPad from the shopping cart, or leaves it behind, or it gets stolen, we are out the cost of an iPad and replacement iPads aren't as cheap as the printer. I could have used our inkjet printer, but that printer is usually out of ink and I have little incentive to replace it as my son has been dedicated to his hobby of printing us out of house and home. Since this only prints in black and white and in narrow little strips, there is little incentive for wasting media.

Meantime, Alice really likes the process and was very happy to have succeeded at it.

It's interesting to note that as Alice is typing, she is chunking. I noted that she naturally grouped double letters, but she also chunked the final 'se' in 'cheese', so it's not just doubles. Neat!

 

Filed under: Uncategorized No Comments
11Jun/150

Daddy’s Noodles

Copyright © 2015 Stephen Hawley, all rights reserved.

pasta

When Alice was very young, we communicated with her with voice and sign. For a long time, her only spoken word was 'up', but she could sign pretty well. E and I, through the trauma that followed her birth when Alice was tied to an oxygen feed, longed for the opportunity to get out once in a while. When Alice was on solids, we tried to give her a varied diet. We let her try whatever we were eating and were surprised that Alice rejected pasta with tomato sauce; surprising since she liked mac and cheese. We went out to a local Italian restaurant and ordered her ravioli without sauce, because that's basically mac & cheese. I ordered penne in vodka sauce. As per usual, I offered her a noodle from my plate. She ate it, and signed 'more'. I missed what she wanted more of, so I signed "WANT MORE DADDY NOODLE?" Alice signed "YES. MORE."

As a side note, Alice's signing had an accent. For the longest time, she didn't sign 'yes' properly (your forearm up, hand in a fist, then nod your fist like a head nodding) and instead signed it by sticking her arm straight out and lowering down, like she was signalling a group to take their seats.

Of course, I gave her another noodle. "MORE" "MORE DADDY NOODLE?" "MORE" Eventually, she was signing "DADDY NOODLE" and that became a thing and one of her favorite foods. Alice would not eat spaghetti with red sauce, but she would eat it if it was called daddy's noodles. Daddy's noodles has not been a static thing. We've messed with it a lot over the years: added ground beef, chopped spinach, mushrooms, and so on. Tonight E made meatballs and cooked them in a marinara that I had canned last summer.

1236572_10203548057716029_846425788692281186_n

And since we eat wheat free since we discovered that Alice has Celiac disease, we served it all over brown rice linguine. It is certainly a different dish than penne with vodka sauce, but it is still daddy's noodles.

Filed under: Uncategorized No Comments