Pause and Reflect

Over the past month, the kids and I, especially James, have had to deal with a lot of new programs (doctors, summer school programs, etc.). It's been bumpy, but I've been here before. This has me thinking of what I pull from sometimes to cope with autism, learning issues, and behaviour/emotional problems.

I have a creative, visual style. Words are great, but there are many ways to communicate. I used to draw my feelings, stories, moods. I sang. I danced. I painted. I participated in group art classes and learned that no two people see the world in the same way, which is truly amazing.

I traveled. While in high school, college, and after. I learned the value of places that are public and offer services. I learned to be resourceful and friendly, while being alert to my surroundings. I found that the little things can matter more that the big tourism totems. I learned the value of listening. I learned how to change plans and change with them - because sometimes it ends up being better. And if not, there's always another change coming, and that one could be a really nice one.

I played sports. I learned to take being the only girl in a class of boys for swimming, skiing, playing soccer or football. Cross country taught me how to put my head down and focus on putting one step in front of the other to get through a rough patch. Swimming, yoga, and dance taught me how to breathe and let tension go. Just keep moving forward.

I have good friends, who let me vent, get weepy, and do a neat trick of soothing, humourous support of "yeah, this is crazy - now get back out there, Girl!" I have a really, really great best friend who from way back when saw life with me as a chance to turn challenges into a kind of game.

My family. My parents loved my brother and me - to the moon and back. I have such good memories of trips, reading, music, meals, jokes, and holidays. I want to share these with my kids and have good memories built with them too. I want them to know the security of having relatives who love them, unconditionally.

I read a lot. It helps me imaging other points of view. I learn constantly. It takes me away when I am stuck, sad and frustrated. When I need to rest or visit an old friend, I pick up a paperback, laptop, or Kindle Fire and access to almost any time, anywhere.

This makes me thankful I've had the chance to acquire a base like this.

I'd love to talk with other parents some day, and hear them talk about what they pull from to deal with their lives.

Flies

We are cleaning and moving house. The worst part for James was not the disorganization and tossing of items, as I'd feared, but FLIES in the house.

Oh, James and FLIES.

His reactions are much calmer, but FLIES stop everything for him. Unfortunately for him, it is high summer, and many FLIES are out and about. They come inside as people, boxes, and furniture go in and out.

For many years, I have been chief arachnid and insect wrangler in the household. James therefore would get a roll of newspaper and hand it to me reverently, telling me: "You can get that FLY over there. Look, come and see. It's right HERE." And I would be taken by the hand and led to said FLY.

After the first day, I was DONE with FLIES.

James rose to the occasion. He got strategy, and slammed a window shut, trapping several FLIES between the pane and the screen. He became best buds with Bueller, the FLY-eating wonder cat. He Chased them down patiently and quietly with wads of paper towels in his hand, and GOT the FLIES!!!!

Every day, there are new FLIES to discover, hunt, and eradicate. We will be so happy when there are no more FLIES in the house.

Tackling Allergies and Acting Up

It's Spring, and we've had a dry Winter, followed by fits of light rain. It's made for a horrible allergy season. On top of that there are several vineyards and a horse stable in back of us. The grasses, blooms, spraying, plowing, and wind have all combined to wreak havoc on our sinuses, throats, and noses.

Indoor trampoline is still a huge help

James has been shaking his head back and forth, like he has water in his ear. He has been sticking inappropriate items in his mouth and chewing them again. For a bit I wondered if it was related to some of the behavioural issues he's been having recently. While that might still be the case, my own pounding sinuses and watering eyes are giving me new possibilities to entertain.

So I have been giving him a couple of warm, steamy baths a week and used some generic nasal sprays that both clear out his nose and give him some basic allergy relief before he goes to school. I have changed our air intake filter in our home.

Now we are starting on the first week of real rain that we've had in a while. James has also been inside a lot more than usual these past two days. Now he's going stir crazy. He runs about at home, on the playground, and even in the O/T room and hides, runs, and refuses to cooperate with the adults when the time comes to calm down and transition to another task.

While this week is a slight improvement over the one before, it's still more to manage. I am tackling it with verbal/visual warnings (counting to 3 with words and fingers) and using his Activity board.

His Aide has started using a checklist to track behaviours and tasks. If he gets too many sad faces, then he knows he loses time on his iPad. His Aide is getting an Activity board for school tomorrow. I hope it will help.

        

Activity Board for home

School checklist

Strangely, writing spelling words is still a great focusing activity for James. And he is really getting into his own bedtime reading session -- both me to him and him to me.

All this organizing and managing seems quite appropriate to me for a Tackle It Tuesday entry. Be inspired, or share your story.

The Good, Bad, & Sleep-Deprived

Good:

• James had a pretty good day at school, despite the time change, a strange aide, and fighting off a cold that one of his classmates brought in to share last week.
• James sat down and did a great job writing his new spelling words 3 times each. Wow, his letter e's are really looking good, and they were so tough for him last year. Still struggling with trying to lengthen the vertical lines for b, p, and h; strangely, d is just fine.

• Completed 1 math sheep and 1 makeup sheet. Did a very nice job with reading.
• Discovered Scholastic BookFLIX. Run, do not walk, to your computer to see if you are lucky enough to have a public library that grants you access to these wonderful, multimedia books.

Bad:

• James fussed and hung on me, trying his best to wheedle me into letting him watch TV. It's so hard to deal with this while I am making dinner or trying to finish cleaning/organizing.
• I had to keep running to catch him for bedtime. We had wiping issues. He cried for his Daddy, who was still fighting traffic, trying to get home.
• I started awake at 1:15, to find James standing over me, whispering "How you doin', Mommy? Can I turn on my light?" (Answer: "NO!")

• From then until 3:20, repeat about every 30 minutes. He didn't like the light shadows from his night light. He wanted a drink of water. The light on. His numbers. I finally broke out the Benedryl. Can't tell if the time change messed him up, the cold & cough woke him up, or maybe it was the fact that the heater kept kicking on ... maybe all 3?
  
  While he did sleep after that, he woke up late, after his Daddy left for work, which made him sad. Then he did not want to change out of his clothes, so I had to use the Mean Voice and corner him for a change, which I hate.
• Another early dismissal day. So naps for me are o-u-t.

The Sleep-Deprived:

• That would be moi. I am making leek and potato soup and trying to wake up over incredibly strong cups of Peet's Espresso Forte coffee (on sale at Raley's!).

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?