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
31May/150

Having a Child with Down Syndrome, Part LXXVI: Sleep Studies

Copyright © 2015 Stephen Hawley, all rights reserved.

Last night, Alice had her fourth sleep study. The first three were when she was much younger, and the first two were failures. It's not surprising. In a sleep study, you get 21 sensors hooked up to your body and then are you are expected to sleep. After the third one, they were able to get some actual data that confirmed what we had told them: Alice was not sleeping well. After that study, they removed her tonsils. No surprise. Tonsils and adenoids are often disproportionally large in people with Down syndrome and can interfere with sleep (side note, their ear canals by contrast are disproportionally smaller and prone to infection, which usually means congestion and difficulty breathing and sleeping).

Alice has not been sleeping well and E suspects apnea and requested a CPAP. The doctors, of course, wanted data first so another sleep study. I went with her and spent time beforehand going over what was going to happen. We arrived and Alice changed into pajamas and the tech put on sensors.

IMG_20150530_200234417_HDR

Through the process, Alice was very chipper and chatty and was asking what each sensor was for. Unlike last time, she didn't try to pry them off immediately. I think things went better because she had her expectations set better and could participate in the process.

IMG_20150530_202428

I honestly don't understand how they can expect you have a normal night's sleep with this rig on. This is a canula that measures CO2 concentration and the beak out front is a thermistor to measure when she's exhaling - which seems silly to me because she has two belts and two other sensors that measure breathing as well. Well, anything for the discomfort of the patient.

IMG_20150530_202059346

The only sensor that Alice objected to was the oximeter on her finger. She was fidgeting with it constantly. I read to her until she fell asleep and then shut out the lights. Unlike the last time, they had a bed of sorts for me to sleep on. Last time, it was a chair. So hooray, progress?

IMG_20150530_205038558

Alice stirred enough to wake me up 4 times during the night and at least once, I noted that the her breathing stopped for a while. Around 3:30 she tore off all the electrodes. The tech came in to survey the damage, but 5 hours of data was enough. Alice fell back alseep and then I did a few hours later.

So now, of course, today both of us are off our respective games. Hopefully it won't be a demanding day.

Filed under: Uncategorized No Comments
28May/150

Having a Child with Down Syndrome, Part LXXV: Watching Her Growing Up

Copyright © 2015 Stephen Hawley, all rights reserved.

Whether we're ready or not, Alice is transitioning into adulthood. Sure, there will be years of this, but they will go by in the blink of an eye.

Alice is going through mood swings and I've heard heard this bit of high-volume communication from her in one go: "I love you so much daddy. YOU GO TO WORK! I HATE YOU!" which means that I'm probably doing my job right.

IMG_20150527_081233108

Still, we walk to the bus stop together every morning and wait for the bus. Some days like today, Alice is very touchy and is talking about her day: who will be at drop-off, if her regular aide will be there, what specials are part of her school day. While her hand is still and always will be tiny compared with mine, I see a change in the shape as she is growing up.

We still have problems with her impulsively touching things that are not hers. Alice has also recently learned that she can access our fridge and pantry as she wishes, although we've levied some weighty consequences for that, she recently went through a quart of ice cream.

IMG_20150526_081300905

Alice doesn't distinguish between flowers and weeds. She frequently stops to pluck dandelions to bring in to her teacher. This day, she decided that she would pick clover and tucked them into the strap pocket of her backpack.

Before school today, since we had some a few minutes and Alice had done well with independent self-care, we watched some Phineas and Ferb songs on YouTube before we headed out. We had watched the fictitious band Love Handle and on the way she to the bus she was analyzing the meaning. "Love means kissing and handle is the guy." Not bad and good to see that there is some analysis going on.

In spite of some of the truly boneheaded things that Alice has been doing recently that smack of behavioral regression, there have been some serious, "holy shit" moments. For example, my dad called and we put him on speaker so that E and I could both speak with him to plan a visit in the late summer. Alice heard this and came downstairs and walked up to phone and said, "Hi Grampa George! Can I talk with you for a minute?" That was some nice speech pragmatics and I was very happy with how she pulled out that phrase. It's good to see that when on a given day she still has trouble with the difference between "may I" and "would you" and "it is" instead of "it be".

I think perhaps the hardest thing for me is the frustration of the spottiness of her behaviors. E had been reading about anger and frustration and one book had noted that anger flares when there is a divide between expectation and delivery. That helps me understand why I spark hot when Alice does something that is very much beneath her capabilities, especially when she seems to have done it intentionally.

Still, she grows up just a little more each day and I feel like we're racing for independence before then.

Filed under: Uncategorized No Comments
24May/150

Running the 2015 Falmouth Road Race

I'm doing it again. I'm training to run the Falmouth Road Race for the Massachusetts Down Syndrome Congress. This is my third time out. The last two times were absolutely tiring. I don't expect this year to be too much different, except that I'm about 2 miles up on my total distance because I ran short distances through most of the winter.

This year's first donor, Stacey, a friend of mine from high school asked, "what do I get?" My snappy response was, "a tax deduction!"

I've been noodling her simple question over and I have a better answer now. If you donate and I have the information to get it to you, I will record a video of Alice personally thanking you for your donation. You too can hear her lilting prosody and I'm sure you'll get a smile.

Here's a link to the donation page.

Filed under: Uncategorized No Comments
21Apr/150

Alice Does DC

Copyright © 2015 Stephen Hawley, all rights reserved.

17190172376_1a35ba2526_z

This is a stunning picture. You don't understand looking at this what was going on during the day, leading up to this. I've said it before, and I'll say it again: I'm Alice's second favorite person in the universe. Everyone else is tied for first. We spent most of the day together because E had spent most of the morning with her. Alice, of course, was seriously ticked off at me for the injustice and made no bones about making sure that I knew it. Still, we managed a walk from the Lincoln Memorial to the Washington Memorial. We stopped for this picture and Alice initially gave me the stink eye, but I managed to get a smile out of her.

It's been an interesting trip. We spent a day at Mount Vernon. We took a boat ride out from Alexandria and spent the day there. E had set up a tour wherein an actor plays the part of a period worker at Mount Vernon and we get taken around the grounds and get a view of the grounds from their point of view. We saw it from the point of a Scottish grounds keeper (huh...) who had set up the distillery and managed the grain production and livestock. Alice fell in love with him immediately and liked asking him questions or telling him about what she was seeing. He was very patient. More than us in many ways.

17028881780_1fa945807c_z

At times it was rough. Alice telling me how much she would prefer to be with her mom rather than me and then managing the conflict between the kids in as fair a way as possible under the circumstances. Still, we've survived and managed to enjoy a few moments along the way.

17028333838_6bed8265db_z

Filed under: Uncategorized No Comments
13Apr/150

One Handed Self-Care

Baths and showers have always been a challenge will Alice. It's taken years to help teach her to take care of this on her own. Shampooing has always been an issue. Working a shampoo bottle when one hand is gimpy is challenging at best. On her own, Alice is just as likely to dump a quarter of a bottle of shampoo on her head or into the tub and miss coverage on the weaker side.

The solution: more independence, not less:

IMG_20150411_145932240

Why didn't we think of this before? So simple.

Alice is now less likely to waste shampoo and now we can concentrate more on coverage. Yay!

Filed under: Uncategorized No Comments