Plinth Blog Special Needs Parenting

29May/140

School Meeting

Alice's school does a weekly Friday morning meeting. At each meeting, they have a rotating presentation done by each class. Like I mentioned earlier, we'd heard that Alice's class was presenting and that Alice would have a special part in it. I didn't know that she had the introductory speaking part. What a nice surprise. It brought tears to my eyes - especially all the applause after her turn.

Even nicer was that while I was waiting in the lobby, I saw Alice pass with her class and I overheard a conversation between two other parents who I didn't know. What I heard was, "...oh that's Alice. She's in the regular[?] class with [mumble]." "Yes, I know." "[mumble] and she's really sweet."

Here's my reaction to this (as an inclusion advocate) - kudos to both parents for knowing Alice; kudos to the second parent for being completely blasé about it; there's more work to do if there is anything but a regular class; pat on the back to E and I for helping raise a sweet child.

 

They went on to sing "Let It Go", but YouTube's robots won't let me post that. This is probably a reasonable case of Fair Use, but I'm not in a mood to fight that today.

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26May/141

It’s Good to Have a Reminder

We've had a number of hard days with Alice recently. Days in which she was acting decidedly below her age and capabilities. These days are very hard for both E and I and I'm sure for Alice as well. Sunday morning at 3:30, Alice got up and tried to sneak down to watch TV. It doesn't matter if she tried since we have the TV on a remote switch, but she still needed to be in bed. I had to intervene several more times and, well, let's just say that I didn't get any more sleep that night. Of course while we were running some errands Sunday, Alice nodded off in the car. I can't do that - I was driving. I didn't sleep particularly well last night either (not from my little midnight sneak, hooray?). This morning after showering, I was having a pretty serious identity crisis as a dad. Why am I doing this? Does it make any difference at all? Could I be lazy and still get the same outcome? I swear I didn't sign up for this. Not my best moment, but every parent has them.

Memorial day, for someone who plays in a band, means parade. I've played in the Florence Community band for 11 years now and I've been to many of the parades - fewer now that I have kids because there are only so many years that they'll want to go to parades and I'm not going to "Cat's In the Cradle" those. This year, I asked the director, Priscilla, if instead of missing the parade could Alice and I carry the banner for the band. Priscilla, the very definition of a good egg, was enthusiastic about it. I tried to make back up plans in case something went wrong, but Alice as super excited to do the parade so it turned out that we didn't really need one.

banner

Alice carried the banner with pride for nearly the whole parade.  But that's not the really cool part.  Seriously. You might think, a girl with a stroke who can't really grip anything with her right hand, carrying a banner while walking a mile - that's cool, right? Yeah, but not as cool as the town we're in. Alice was in her element and she knew it. Every quarter block there were several people who knew Alice and called out to her - not jeering, not teasing - honest pleasure, "Hey look, it's Alice!" Alice shifted her grip on the banner to her left hand (her dominant hand) and waved with her right, calling right back. For most of the parade, I had to ask her to slow down so that she didn't catch up with the Lions Club just ahead of us. I can't tell you how nice it is as a parent to see so much of the town recognizing her or responding to her.

And there was my answer to why I was doing this, in my little dinky town lining main street and calling out to my daughter. Alice loved the parade and loved the attention. Towards the end, her stamina ran out and the gap between us and the Lions club kept getting wider, so she got into the truck pulling the band and I marched the rest with the banner, but still full of pride for what a great job she did and what a great job the town has done for her.

postparade

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25May/141

Let It Go

frozensign

Disney is a machine and sometimes it seems like Alice has been completely swept up into the meshing gears. Alice loves musicals and since Frozen is a Disney Princess movie and a musical, it is powerful mojo. Also, I hear that Alice's class is doing a performance of Let It Go this coming Thursday and that Alice has a special part in it. Imagine my surprise when I was playing Olaf's Summertime song at dinner and it cut into Let It Go and Alice got up and started doing choreographed moves. Huh. Interesting. I took out my phone and shot this video. This was a nice surprise at the end of an exhausting day that started at 3:30AM with me catching Alice sneaking downstairs (no doubt to try to watch Frozen). Enjoy.

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24May/140

Alice Loves Babies

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Alice and I visited my co-worker Elaine and her 1 day old son, Calvin at the hospital. Alice was so pleased to hold him. See her mouth? She was making shushing noises to calm him down every time he got a little fussy. She's a natural.

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24May/140

Fundraising for the MDSC

Part of the responsibility of signing up to run a race for charity is raising funds - something I'm not particularly good at. This is odd because I tend to be very quick to help others, but I have a hard time asking for money for charities I represent.  I thought I'd try something different this year. In addition to hitting work and social media, I also decided to contact my state and federal representatives.  Why not? I've asked for help from Representative Peter Kocot, Congressman Jim McGovern, Governor Deval Patrick and what the heck, Michelle Obama (by the by, Google's URL shortener staled out the link I sent to Mrs. Obama - I'm ashast - Mrs. Obama, if you find your way here, here is a different shortened link: http://bit.ly/1jHMQ5y which points to the original, here).

I asked each of these people for a small amount: $20.  That's it.  I don't honestly expect anything, but if I did I would be tickled and I will praise them publicly. Here is your opportunity to show that you respond better than my representatives. Please donate. $20. It I got that from half the people who are in my friend list on facebook, I'd be past my goal. Make that happen.

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10May/140

It’s Been Suboptimal

Copyright © 2014 Stephen Hawley, all rights reserved.

This week has been suboptimal.  We've had a number of issues with Alice for a while.  One of them is getting dressed and ready for the school bus in a timely manner.  This is a skill that Alice has had in her repertoire for years. This past year, however, she has dropped into a mode where she preferred to stay in her room and walk around in circles perseverating about something. We poked and prodded. We supervised. Finally did the right thing by removing all TV time and allowing her to earn some for every day that she succeeded in getting ready on time and appropriately. She's been successful for a month. Hooray! Not so much on Monday and Wednesday and Thursday.  Friday, she had gotten ready and was in her room (locked - always a bad sign) with her iPad (house rule broken right there) and was wearing clothing that looked a little light, but doable. The top she was wearing was too loose - quick check. Yup, no bra. I asked to put one on and got lip for it. E saw her and lost her temper because (unknown to me) Alice was wearing clothes that E had bought for the summer and had put away in our closet. Alice had snuck into our room, took all the clothes and put them away in her drawers.  E took the clothes, stripped her and asked her to get dressed in something warmer and removed all earned TV time for the breach of privacy. I checked on her again and now she was dressed in a pink top and a blue skirt. *sigh* Alice is not allowed to wear skirts to school. Whenever she has, we've gotten notes about her acting inappropriately with them. So another change.

On the way to the bus stop, Alice asked me, "how mommy feeling? Happy, sad or angry?" "What do you think, Alice?" "Angry." "Yes. She's frustrated and angry. You went into her room and took out those clothes so she took away your TV time." "I want to watch TV." "You wanted to go into our room more, so you're not watching TV this weekend." "Daddy. I watch TV and you know it."

So frustrating for everyone.

In the meantime, I found out that Big Y has its own magazine.  It makes sense to communicate about the company, but it still surprised me. Several employees told me that Alice was in it, so I asked a manager for a copy and they gave me one. How nice!

onthetablecropThis is the article they printed, which is the open letter I wrote, with a few edits, annotations, and emphasis added.

 

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