Special Exposure / Wordless Weds: Wishes

One afternoon, as I walked him home from school, James saw a dandelion gone to seed. From years of watching his sister, he knew what to do:

Honey, I remember when you could not hold something like a dandelion stem in your fingers. You could not lick a lollypop or blow bubbles, let alone talk and say "Look, Mommy -- I doing it!"

Right on, James. I hope you get your wishes. I am seeing some of mine come true in you, and I am so proud.


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visit Special Exposure Wednesday at 5 Minutes for Special Needs.






               and ... Wordless Wednesday

IEP Check-In

We are two-thirds through the school year. Yikes! James seemed to be doing well and I'd been in contact with his teacher, aide, and services coordinator. Occasionally I'd catch the O/T and APE folks and touch base. This year, however, I'd not been in touch with James' Speech therapist. After almost 2 months of saying I should schedule a meeting, I had the meeting.

First, I had to contact the services coordinator. This is easy to do, if I can keep my mind on-topic long enough to create and send an email. Pardon me while laugh at that. Ahem. Okay, that took several weeks. Then there was the back and forth as to day and time. Then James' teacher asked to attend, which is super, as far as I'm concerned. Then we had to get through testing ... so here we are -- conference week.

Wow. We had good meetings. Over two hours worth. Speech went first. She had some interesting things to say. First, she told me she'd mixed up James' sessions. He has both therapists to himself on one day, and later in the week he attends a session with his classmates (there are a lot of kids in his class who go to Speech). This sounds like a great idea to me. I asked that James work more on pronouns -- right now he always gets them wrong at home. I can't tell if it's on purpose or not. Overall, James is doing well, and progressing nicely toward his goals.

Then for the next half-hour I spoke with his teacher about his testing. He's *so* close in reading and writing to passing at grade level! Even in math, I think with a little extra work he'll improve for the testing. His teacher has some great tools she'd using not only for James, but also for other kids in her class. She is totally committed to helping all her kids grow and learn, James included. I so appreciate that.

For the last hour, I talked about current issues with his services coordinator. James has started to have some behavioural issues. Mostly regarding computer and iPad use. He has furious melt-downs when it's time to stop. This is a recent development -- he's been doing well with stopping the previous 2 months. Sigh. He's also testing his aide and I am starting to have palpitations about next year at a different campus and teachers I have not met. We also talked about changing up James' morning routine again and giving him some time and experience on the playground before school.

To summarize -- It was necessary to have the meeting and it happened at a good time. James is making progress and it's time to start thinking and planning for the next year, campus, and goals. And I feel better, being more connected to what James' school day is like.

Still Not Tired of This

Washed James' hair this afternoon, and again no screaming. We even had a little water play out in the yard first, to get him in a good mood.

He wasn't happy, but he helped direct how the shampoo and rinse session went. He and I had quite the conversation, establishing that we were going to use a rinsing bowl, not the shower. I promised to not  use the hair dryer. We agreed on the number of rinses and counted them together.

We've warmed up into the high 70s this week, which is bizarre, and I hope to be able to shampoo him later on in the week as well. Tomorrow we're even thinking of going swimming.

Wow!

Sensory Update

Hygiene Victory Over Sensory Distress!

I've given another bath and shampoo session to James, and again, no yelling, screaming, crying, thrashing, or tears. He even sat still and let me do a big trim number on his hair.

After, I brushed his hair several times (which is usually hard to get him to sit still and allow). I even got to swipe the extra ear wax out of his outer ear.

He is still in a good mood.

Yes! Yes! Yes!!!!

School Photo Day

I walked James in to school this morning, across the ghostly-white, foggy playground, to meet his aide. All around me were other parents, hustling their kids along too. Many of the boys sported hair that was precisely cut, combed, and gelled back (or up in a mock Mohawk), as well as crisp polos or button up shirts. Yes, school Photo Day was upon us once again.

Oops.

I completely spaced Picture Day -- thank goodness they had signs up announcing it at his school this week or I'd have really been unpleasantly surprised. I've not been feeling well this week. James hates having his hair washed and he screams like a banshee and thrashes when I try to cut it; so with me feeling unwell, I left his hair alone, lest I give him a horrible hatchet job in my hazy state of mind. Yesterday we were at a doctor's appointment after school, 65 miles away. After 45 minutes of working with a physical therapist we drove 65 miles back in traffic, which means we were both a bit dragging this today. He does not do crisp shirts and he did not want buttons this morning (so no polo top).

Even better, I could not find his order slip and I had to leave directly and drop off his sister at her school and do the weekly grocery run. Could my preparation have been more pathetic? Luckily, I had my checkbook in my purse, so I could do my two errands before swinging by James' school on the way back home. The nice ladies in the office showed me where the extra Picture Order Forms were and called his classroom to make sure they were still waiting to take the photos (they were).

I walked slowly back to James' classroom (I've also tweaked my hip and knee - fun times!) and peeked in the door. There was James, sitting calmly in a semicircle reading group, in front of his teacher and reading! Why am I excited? It was just so NORMAL! His teacher warmly welcomed me into the room, thanked me graciously for his order form and check, and asked James to take a turn and read for me. He was flustered, but complied. I was so proud. Especially when a reading buddy joined in, read a wrong word, and he gently corrected her.

Beam, beam, beam.

Okay, James: I am over the lack of styled hair and dress shirts. Sometimes what you can't see in a class photo can make your day for years to come.

Love Always, Your Mom

Packing Lists ... the Shorter Version Rules!

Even though it means more travel time, I prefer to drive down to the LA area from the Bay Area. Honestly, I do not think James could wait successfully in the security lines, and all the noise and people would freak him out. I am sure that just as we made it to the head of the screening line, he'd bolt. Yeah,   I so don't ever want to test that paranoid fantasy ...

Also, I have more freedom to PACK. Airline weight restrictions aside, many items we used to entertain the kids (or keep them fed & clean) involved Prohibited items (milk, water, nail clippers, scissors, food). Besides, by the time we got to the airport, parked the van, took the shuttle to the terminal, got through security, and checked in, and flew into a SoCal airport (assuming the plane was not delayed a couple of hours or oversold) we'd be in Bakersfield or further south. Trumping everything else is the fact that James cannot stand random up & down motions and has extremely sensitive ears.

But back to the packing list. Clothes are the easy part. Food is pretty easy because our kids are picky eaters. I usually do the weekly shopping at Trader Joe's and shlep it with us and we're good for most meals. Equipment is my Waterloo. It's getting much better. I used to pack 2 bags per child for special toys/comfort items. Of course they were items used daily, so it had to be done at the last minute, while taking care of home chores for the week or so we'd be gone. Recipe for stress and cortisone overload: Bing!

Here's a sample of what we packed this time:
@ Daughter: conditioner, brush, sparkle hair spray, nail polish, tooth brush, paste, flossers, mouth wash, Chapstick/lip gloss, plug-in nite lite

@ Son: pull ups, Balmex (hands-down my fav to deal with any kind of rash), powder, wet wipes, tooth brush, nail clipper, tooth brush, paste, floss

We had some extras in there because we had tickets for Trick-or-Treating at Disneyland. When in Rome ... eh? The exciting part was that everything fit in 1 bag per child. If not for the costumes, it would have been 1 bag for both kids ...

Here's the bog difference for me, when considering logistics for the trip:
-------- ephemera ----------
• 2 books
• 1 sketch pad
• MagnaDoodle
• phone
• camera & download cable
• chargers for phone and camera
• scissors
• sewing kit
• old crib mattress & sheet
• picnic blanket
• double stroller

The first 8 items fit in one reuseable bag. The next 2 items we use for bunking James in hotels. This is because he rolls off the side of a bed easily, and once he whacked his head. We find a nice corner for him, put down the picnic blanket and then set him up with the crib mattress and his blankies, which he travels with. Sometimes we even use the picnic blanket if we're also stopping at the beach. It's heavy-duty, and lined with this vinyl on the underside. Strange as it seems, I still find use for the double stroller. It's like having a nanny with strong arms while spending 15 hour days at an amusement resort. James still likes to buckle himself in -- it seems to make him feel secure.

This is what we did not bring: box(es) of diapers, special feeding cups and plates, toys that run on batteries and make lots of noise when buttons are pushed, white noise machine, ice, beads on a wire, porta potty chair, booster seat, books that make noise when you push buttons, spinning toys, toy phones, stacking toys, teething toys, portacrib, excessive stuffed animals, or extra "lovey" pillows.

Vacation just got better!

Preschool Teardown

Today I had my last regular progress meeting with James' preschool speech and language teacher. We covered his IEP goals and progress to date, as well as discussed how far he's come and what our plans were for the summer. I got weepy.

Especially after that, when I stopped by to say hello to his teacher at her classroom on her prep day. She was dismantling the classroom. How symbolic. Yes, there is one more week of school and yes, he will be doing a month of summer school. Not to sound too angst-y, but things will never be the same after this.

We are all moving on, moving up. I know this is a good thing. We've so worked and prayed and celebrated James making progress, and we want it to continue. But this was the start of James at school, and we've been with this program and these teachers for two and a half years.

I look back at pictures of James from soon after he started preschool to recent snaps. Such big differences, and he is ready for more. Here I am, coming to grips with the fact that things will be changing and gearing up to get up to speed with a new program and work with new teams.
James in 2008

James in 2010

Magic Marker Monday: Life Coaches

I decluttered my son's room this morning while he was off at preschool and found some of the art work he did while at summer camp last month. It shows a nice progression of how James has grown with everyone's help.

This is a prime example of how James used to work when he had to be coaxed to draw or paint in class:

Not much going on, right? Oh, I know it's good for doing the fine motor control work and pinging parts of his brain, but artistically it's, well, lacking in joie de vivre.


Somewhere in the second summer camp session, something caught fire. Instead of bringing home a couple of specimens like the one above, there was a great ramping up in participation and exploration. I think I see the hand of someone inspired to help James to give more than going through the motions:

Notice all the colors? The glitter? Increase of area covered? Someone was having fun, and I hope it was both of them.


Now here is what James likes to do if he's happy, excited, and left to his own devices:

As a doting mother, I am pleased to see energy, glee and passion in this masterpiece (or, messterpiece). A joyous, riotous expression of "Whoopee!!"


I think I am going to turn these into photos, and have them mounted in a frame with 3 windows. I shall call it: "Summer of 2009, With Life Coaches"

Visit 5 Minutes for Special Needs for more Magic Marker Monday.

  

A Child Is Waiting

I was up late last night and saw the beginning of the 1963 movie A Child Is Waiting.

I had to turn it off, it disturbed me so much. Because the opening sequence haunted me. If we'd had James 40 years ago, he would have been that boy and we would have been told that our best hope was to institutionalize him.

Our sunny, funny, smart James.

Seriously, I have tears in my eyes as I get shivers down my spine, just thinking about it.

If you want to read more, check out this blog post.

Push It Real Good

We just got back from a fantastic trip to the speech & language therapist. First -- we got there ON TIME!!!! We met James' first case worker on the stairs. This is a wonderful woman who walked my husband and I through all our assessments and evaluations and signed us up, fast and furious, for all kinds of services to help our little guy. With a minimal of prompting, he said "Hi, Mary." She was so delighted! Last time she'd visited, he was just starting to say sounds and words. "Call me!" she said, as she dashed out the door to her next appt. and we marched upstairs to ours. The great thing is, she really means this.


I brought my daughter in to the therapist's office because we had to come up with a new appt. date & time. Summertime does that, I've noticed. James was talking so much more while he played, and handled the toys with confidence. After we'd hammered out a new interim schedule, the therapist helped me figure out how to get him to practice saying three- and four-word phrases. Talk about your heady mommy excitement! I remember crying this time last year, because at times I thought he would *never* talk!

It comes down to this: James needs to be pushed. Oh yeah, big guy! We will push it, real good! Meanwhile, I will treasure today -- the day you said "blue fish clock," "I want sucker, please," and "wha' is 'it?" Yay, James!

Take Three

James is now starting to use three-word phrases!

He is also running around and saying "Oooh, pretty!" a lot. Like he did with "Ohhhh, man!"

Curious George is now his favourite thing.

Plus growling like a bear.

I have discovered that if I really want him to get up in the morning, all I have to do is tie his door open. It drives him nuts. I am an evil mommy!