Thursday, June 23, 2011

Asking For Help & Managing It Too

The Beatles had it right:

Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

Over the almost four years since we started asking for help for James, I've learned a lot about asking for help, getting it, and managing all the bits that get blown at me during the process. Despite all the services and support we've already received, there's so much more help we as parents and James will need. Some we won't get. Some will crop up unexpectedly. But I've learned that much of it won't come easy and will need a lot of management.

It starts with hearing something or reading an article. What? A program or service that sounds like it would help James? I'm on it! Or overwhelmed, before I even pick up the phone or call up the browser window. You see, what happens next is something like this:
  1. Leave a message (assuming contact info is right, which is not always the case), & pray it's coherent to whomever's picking it up. If I am lucky, there is no Phone Tree of Doom involved
  2. Wait for the call back
  3. Call them back when you miss the call / Contact them again after a few days without a response
  4. Complete intake of information, as needed
  5. Call them back when you miss the call / contact them again after a few days without a response
  6. Take notes. Lots & lots of notes
  7. Make mental notes to make time to organize notes (which soon grow into message haystacks around the house); ditto the three calendars that you swear you are going to consolidate
  8. Speaking of calendars, make notations in pencil or erasable marker, because they will often have to be changed; the events that trigger the changes will be many and fascinating
  9. Be surprised by things like more paperwork, possible credibility crashes, and extra costs revealed
  10. Hold on to my temper and be calm and polite when frustrated. Keep asking questions
  11. Follow up after, with thank yous and/or feedback

There will be paperwork. Further calls and emails to make. Folders, brochures, and pages of web content to sort through. Some of this will have to be worked on while trying to be a mom and keep the house together.

Sometimes my hopes outstrip what is actually available and I have to manage my own disappointments. One positive outcome of my having to leave my job is that I can finally take a few steps back and my desperation that every request *must* come through has lessened. Respite care, for example. That was a year of hitting dead ends and my head hitting the wall as I struggled with the ache of needing respite, not having any money, and having the provider send me mixed messages instead of people. Man, I cried over that one.

Then I asked again (different person this time) and I made contact with a different Vendor. Voila, respite! It didn't happen the way I'd pictured overnight. I came to the realization that part of the respite hours were going to be everyone getting briefed, introduced, and assessed. Even when we'd settled on the people who worked well with our family, sometimes life still throws curve balls. Just like us, the respite folks have family obligations and experience illness & car troubles.

Makes me wonder: How do other people ask for help and what are their helpful managing strategies?

Wednesday, June 22, 2011

Wordless Weds: Singing Well

How sweet is it to watch your child on the spectrum (who also has verbal delays) go up to Snow White's wishing well and sing back to her echo?


PS: His sister fell in love with Snow White from seeing the movie on DVD. James fell in love with her from all the video game-like special features on Disc 2. Go figure -- he still knows and loves her.

For more great images or to join in the fun, Visit Wordless Wednesday

Tuesday, June 21, 2011

Waiting ...

It's summer, and swim lesson time again. For James' sister. Over the past four years, keeping him safely put while waiting for the swim lessons to end has been a challenge.

At least for the first two years, he was fine hanging out in the stroller. Last year I had to chase him, as he would not stay put. This year, he'll stay seated, but heaven help us if there's a pen laying out (and there always is):

Meanwhile, we'll just keep swimmin' swimmin' swimmin' ...

Monday, June 20, 2011

Magic Marker Monday: Club Summer

Summer is here! Even though James is at summer school through early July, the afternoons and evenings are warm, long, and lazy. Time to break out the tents and do some indoor camping (about all I can handle right now)!

Last night I heard singing and merriment. Our Direct TV hard drive died, so there's even less TV than usual going on. I love what happens when they go out and make their own entertainment.

I went to investigate and found:

There was a flashlight! a circus act with Minnie Mouse! and a kind of comic opera vignette about a private detective, who sang about her work and finding things!

A peek inside, once the clubhouse kids took a break:

Ah! Flashylight and mermaid!

The rest of the circus performers, on loan from Disney!


Plus tent, plus imagination!

Even though it was James' sister's idea, James participated whole-heartedly, and even became the audience, clapping away and saying "Wow, that's Great!" I love it that he can now play with his sister like this. And I am happy for his sister, who often wishes for someone to play with her. I notice his name even made it on the clubhouse this year -- that's a milestone!

The kicker: this morning the clubhouse was cleaned, almost before breakfast; ready for more adventures.

For more great masterpieces or to share some of your own, visit 5 Minutes for Special Needs for more Magic Marker Monday.

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Sunday, June 19, 2011

A Boy and His Dad

James has started to really play with other kids. They don't have to be his age; he is a social guy who is really starting to interact with others. The sparkling, slightly naughty boy who knows how to use his cute charm is wanting to be part of the playing scene within a group.

How lucky for us that the Wonder League just started up this Spring, and that James' teacher sent an informational flier home in time for us to sign him up.

It's certainly been wonderful for James. My husband reports that he loves his uniform, can hardly wait for his turn at bat, and runs with total joy. The volunteers who work with the kids are not only helping James learn the game, they are mentors for playing with others, socializing, and role models for the teen years.

It's also a special time together for James and his Dad. They've gone to practices together and are creating a lot of special memories. Like the times James gets to announce the next at-bats, talking over the game together in the car, and his Dad watching him from the stands like any other proud Dad.

Then there's the time that James refused to come over for the team picture. His Dad shook his head as he told me that three teenagers could not catch him as he ran laughing across the huge field. Even when they ran him into the dugout, James evaded them. Kind of makes us feel better about all those times he's evaded us!

So if you clicked on the link above for the Wonder League, James is behind the photographer. Somewhere. Running amok and laughing like crazy, loving every second. His Dad is in the stands, torn between yelling at him to come over and grinning at the spirit his son has.

Here's a photo from when we had him in the car:

After I asked him to say cheese:

Thank you , thank you, thank you, Wonder League! Special times, special memories for all our special people. And Happy Fathers' Day to all the Special Dads out there!

Saturday, June 18, 2011

Swinging Into Summer

James is two weeks into his summer, and already he's been on a road trip of 1,100 miles, gotten a stomach bug, and finished his first week of summer school. He's been showing the stress, but holding it together so well. I am proud of him.

I could tell that he was getting anxious over the end of Kindergarten. There was bedwetting almost very night (after staying dry for about 2 months) and it was harder to keep him on-task. He really started testing by trying to wander away. During this time I was filling out a behaviour form that a consultant needed and realized that a lot of the acting up (e.g., getting into things and breaking them, making messes, etc.) on James' part was a result of his being bored. The toys that used to focus or interest him just weren't cutting it. Still searching for the Next Things ...

The day after the last day of school, I started cleaning our van and packing for our week-long trip to parts down south. James might have been a little excited/anxious about that. Hard to tell. He did ask a few questions and I tried to plot our trip for him on the calendar, because his class has been studying the days of the week. I packed lots of changes for my laundry-creating guy. I brought some books and a pad of paper/box of crayons. I figured we'd be on the go most of the time and we were.

At 5:30 am I put the kids in the loaded van and off we drove. I figured they'd nap for a bit, but nope -- I had chirpy kiddos with me on the road. They were very good travelers through the rain, detours, burst of hot sun, and more rain. We visited family, with lunch at Grandma & Grandpa's and afternoon/dinner with cousins. In between, we visited a mall and played with the stairs and fountain.

We finally rolled into the motel parking lot at 10:30pm, just as James announced "Mommy, I gon' be sick." Whoosh! Opened the doors to let in the fresh air (and a little rain). Calamity avoided.

Rested the next day, and discovered the pretty motel pool was not heated -- yikes! Still, it was fun splashing for half an hour. The afternoon was spent at the beach, followed by pizza dinner with two of our favourite aunties. The two exciting days at Disneyland ... the beginning of constipation central. I continued to spike his milks with Miralax.

Then we took a slow drive up to visit with friends near San Luis Obispo. Luckily we had a wonderful place to stay, because James finally passed the BMs but then lay on the sofa the rest of our stay. Gas, six-year molars pushing through, *and* gastroenteritis. My poor guy! He was a trooper, playing with the stairs and chatting a bit with our friends. I was so happy that I'd learned my lesson from a previous trip and packed the essential OTC meds from home so I could start getting him what he needed ASAP. I felt guilty about him getting sick, but each time we go on the road, the problems change and seem to get less drastic. And he loves going on the trips.

I kept him home a couple of days and then off to summer school. Wow. Some familiar faces with students and teacher, but no one where James was used to seeing them. Also, the school was at a new campus for James, and it is LOUD. I can tell it's stressful for him because he clings a bit at morning drop-off and cried when he saw me again the first two days at pick-up. More on the school later. More learning and growing for us.

Friday, June 17, 2011

Friday Morning Wonder

We got an early start this morning, taking James to summer school across town. Good thing we were early, look what we saw:

We got closer:

Hot diggity! It was the warm up for the annual Hot Air Balloon Festival!

(I think this one is a flying chicken fish, but it's really called "Sushi")

We pulled over and went "Woah!!!" as they flew right over our car in the parking lot:

We had to get closer. James was literally jumping up and down with delight, flapping his hands and yelling "Look at *that*, Mommy!":

James' favourite one:

Aaaaand one followed us over to his school, where it thrilled the kids by almost landing in the parking lot and then the school roof:

These are my favourite times with the kids. Starting out on a normal summer day and running across something wonderful, random, and exciting.

Monday, June 13, 2011

Magic Marker Monday: Colourful Gratitude

Well, that was quick! May zipped out the door so quickly, with end of school things to tie up, summer school to set up, and trips to finalize. I vowed I wouldn't do it, but I did: Made the thank you cards for the kids' teachers THE last day of class. Hey, at least I got the Starbucks cards in advance this year!

I have this big Perfection Roadblock that I set up and deal with by ... procrastinating until there is only time to barely get the job done. Gah.

I've gone fancy with blockprint cards & watercolours, but this year so far, I am still a fan of the coloured construction paper cutouts.

My daughter produced these for her teacher:

and whipped this one out for James' O.T. (she loved playing with the letter stamp/markers):

I really enjoyed the ones for the Speech Therapist and her aide -- just the other day she'd taken time to tell me how excited she was to see all the progress he'd made over the year. She also shared that she wished she could make one of her special version books of Chicka Chicka Boom Boom, because James adored it:

James' aide got a special heart made by his sister:

and James helped write some of the card, including his name:

For his teacher, James wanted an animal, harkening back to Ag Days and the classroom's theme of "Mary's Lambs" -- he chose a chick (possibly still on that Chicka Chicka theme):

Using the simple materials makes this project fun, not a Perfection Headache. The kids get to see that they can personalize their Thank Yous while they play with pens, paper, and glue. This is a good thing, because we just came back from a week on the road, and I think we have another half dozen Thank Yous to go!

For more great masterpieces or to share some of your own, visit 5 Minutes for Special Needs for more Magic Marker Monday.

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