The Power of Blankets

Every since he was old enough to track familiar things, James has been attached to his Bear Blanket. It was a hand-me-down gift from a cousin. What a wonderful gift it's been!

That Bear Blanket has seen Disneyland, ER rooms up and down the state, traveled through Oregon and Washington and visited the MIND Institute at UC Davis. It has soothed him through many an illness and helped him go to sleep at night at and away from home. It must always be positioned just so, with the red border tucked under his chin at bedtime.

While James does not carry his Bear Blanket around as much as Linus did his, he does like to wrap it around his head, and sometimes drape a chosen person with it for a big hug session.

I know most 8 year-olds don't carry their blankets around anymore. But really, when I see him smile like this, I just don't care.

And you know what? Blankets are awesome. The people behind Project Linus know that. We've made a couple of fleece blankets from a kit for them. Check them out, and spread some comfort and cheer.

I've Got My Work Cut Out For Me

Well, I'll know what I'll be doing today:

Note: Allergies and stomach flu do not mix well.

I had to give James some of the anti-nausea pills that the ER doc gave me the last time he started yammying and could not stop, once started. The climax after that was pretty awful.

Then we both got 3 hours of sleep.

This morning he's taking on electrolyte water (I love you, Trader Joe's), blowing up the Death Star (go, you Angry Birds!) and has kept down 2 yogurt tubes.

Meanwhile, I love my washer and dryer.

Morning at the Med Center

After another rough night and early morning, I brought James in to see the doctor. I wanted to rule out everything else (e.g., ear or throat infection, stomach bug). Because I wanted one of the first appointments of the morning, we saw a new doctor. She introduced herself to us and told me she'd reviewed James' chart as well as the information coming in for today's visit before asking me about my concerns as she checked James' breathing, ears, and throat. She was very calm, thorough, and quick. She did however, have concerns it might be appendicitis.

Oh God. 

This, this, this, and this flashed through my mind, and I teared up.

I explained as calmly as I could to the doctor that we'd been this route before, and it was rather traumatic and we really didn't want to do another ER stint unless it was absolutely necessary. I give her all kinds of kudos because she did make it a much more positive experience for us, while still taking steps to make sure we were not dealing with appendicitis.

First, she ordered an x-ray of James' digestive system, which could be done on the same floor of the building. She had a wheelchair brought so that James would not have to walk. The x-ray was quick and efficient. James even perked up because he thought the technician was cute. We were soon back in the waiting room, and the new doctor saw us before I could get halfway through a short Winne-the-Pooh book.

This makes sense if you read down to the end.

Next, she showed us BOTH his x-ray, and answered our questions. Because yes, James was interested and asked "Is that me?" I loved how she communicated with us. The image showed some constipation and air in his intestines, as well as a stomach full of even more air. So the diagnosis now leaned more towards constipation. The doctor offered having an enema done down the hall in the Treatment Room and then recommended getting blood drawn to definitely rule out appendicitis. That being far preferable to an ER trip at another facility a mile or so away, I agreed.

Well, the enema triggered nausea and yammying. Not much happened at the other end. I did, however, manage to get a urine sample. There was a bit of a mess. How weird am I to be happy that it happened in a med center and not the car or our house? After it was over, we had no BMs, but a much more relaxed guy.

I did a quick emergency call to his Nana to please bring clean jammies and underwear. While we waited, James was able to lie on a padded gurney and watch a movie, covered by a beach towel from home. The doctor came back to check in. She told me the urine sample had no indicators for appendicitis and asked James to jump up and down on his toes, which he did. She then told me she didn't need a blood test, that James would not have been able to do that if he'd had appendicitis.

I almost kissed her feet, I was so happy. Everything was checked out with a minimum of fuss and delay and a maximum of compassionate assistance. James could go home to rest, and they even sent some suppositories home with us to try later tonight and tomorrow. Good Lord, I hope they work!

This looks like a cool x-ray app for the iPad - I think we'll check it out. Click the image above for more info.

Autism: Can't Leave Home Without It

We're back! I'll be recovering through next week.

James developed Pink Eye and the Summer Flu while we were on the road. While I am thankful there were no horrific constipation issues or ER visits, managing James' testing behaviours and both kids' sensitivity issues while being the single parent/caregiver 24/7 for over a week nearly pushed me past my limits.

For the first night in a long time, I can sit down and get some observations down:

• Don't keep James up past 9pm. It's not pretty the next day, especially if we're headed to some place like Disneyland (good luck with that because fireworks from Disneyland start at 9:30 and can be seen and heard from our "Letter Q Hotel").
      
• While not ideal for getting a good night's rest, it's sweet to sleep next to my buddy (and a good safety procedure, as he can still roll off a bed). He starts off hogging the bed diagonally but can be nudged over to one side. He still looks like my little boy while asleep.
       
• Bring and use more hand cleaner. James still mouths handrails when maxing out from sensory overload. Also? He's now using the boys' bathroom by himself. Hand washing is vague and inefficient, plus we still have that wiping issue.
     
• Writing letters and playing Angry Birds really help focus him, even when he's being a King Stinker. Try to give him these breaks *before* he gets too naughty and lands himself in Time Out in the stroller or facing the wall, wailing and melting down in public.
        
• James loves to help -- let him take bags to help load/unload the van. He's good at it and it gives him exercise. Ditto with cleaning up.
      
• Remember that special attention/time with big sister is more important than ever. Let James watch TV or play a little Angry Birds on my phone while I take time to brush out and style her hair or read out loud to her and ask what she's enjoy doing on vacation.
     
• James' gag reflex is getting worse. Don't try to make him be quiet when he's trying valiantly to not throw up. The anxiety triggers an awful mess. Also? he will always say he's feeling fine, even when producing evidence to the contrary.
     
• Must wrap son with a beadspread like I used to with feral cats. It's the only way I can pin him on the bed and keep his hands and legs from interfering with getting antibiotic eye drops in his eyes.
     
• James will now display behaviours that are more aggressive when he is frustrated/upset.
  -- He screamed so loudly in a food line that he startled people near us. I saw those
      eye rolls and stares.
  -- He bit a small toy in half when I physically removed his hands from the bin
      (where he'd been furiously messing with them in a temper) and instructed him
      to stand still, and
  -- ... he tried to swipe a group of ceramic mugs off a display shelf.
      The sales lady was very nice but he earned that little swat on the rear,
      order to make an apology, and little chat with Mom in the middle
      of the store.
  Not yelling or showing despair were the two best things I could have done and they were effective, but dang! I wanted a drink after. Yes, I am in charge -- don't even *think* of trying that one again, because it's *not* acceptable. Let's go some place quieter and all calm down. 

Do they have Calm Down Bars? They should.
    

SOOC: Intense

The past few weeks have been extremely intense. I think the picture from this particular week will reflect some of that.

ER visit #1

Wettest March in 8o years; our garage leaks

ER visit #2

New use for walkathon shirt -- staff can "see" autism and adjust accordingly

Sick, better, sick ... planning for a funeral ... being alone ... sun and storm, that's life

A good way to remember those who are gone

Preparing for the funeral

Reception with family and friends

Long drives in stormy weather

Science Fair delight

Odd moments of peace, calm, and renewal

A lot to share with the SOOC action at Marvelous Mommy's blog. Visit her site to see more life, straight-out-of-camera (SOOC) or share some of your own.

Special Exposure / Wordless Weds: Pause

I looked through some of the images I'd taken last week, and was reminded of a drive I took with my daughter this afternoon, during what turned out to be my one lull between trips to the ER with James. Which came after hearing about a death in the family.

I am so glad we took this drive up that twisty country road. I can't think of a better use of this quiet time between emergencies than to spend time with my other child, breathe, and admire a bigger picture:

For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.






               and ... Wordless Wednesday

Long Night in the ER (Day 5-6)

Open Letter to Emergency Rooms: We have to stop meeting like this. It's wrong, wrong, wrong and I want it to stop.

I never intended to spend so much time with you and have you reach so far into my life. But you have. No one can save lives like you, ER; you make life and living seem so precious. I've met some amazing people through you and had to stretch to keep up with your bursts of frantic energy, shifting teams, and constantly change of game plans. My life will never be the same after being so much with you recently.

I will always remember our special times together, especially late at night. The waiting during those fantastic hours between 2 and 4am, where time seems seems slow and the world narrows to just the two of us. The random weekends and odd vacations cut short, where we had the unscripted rendez-vous.

But the sleep deprivation and anxiety are wearing. I think it best that we just be friends, and see each other in a much less frequent basis, in future. Can we just try that, please?

Yours, sincerely - Me

P.S.: Yes, we are back home, and intend to stay there together.

SOOC Saturday: In the ER

New pediatrician at the med center, plus extreme symptoms with a residual of autism, equals a day in the hospital ER.

Do you know how many times I have been to the ER/hospital over the last year for my family? Too way damned many, that's how many.

Let's just say it's averaged more than once a month.

James was a patient kiddo through it all. He hurt like the dickens and fought the nausea like a champ. He did his best to communicate with a team that was not only new to him, but also unfamiliar in dealing with an Autistic pediatric patient.

He was so good about being poked and transferred from car to wheel chair to bed and then back again. I am glad I was able to talk them out of the ambulance ride. That would have stressed him out so much more.

 Trust me, you do NOT want to be watching Dora the Explorer like this.

While I am very grateful that we have some form of medical coverage, the copays just shot our monthly budget and added to our credit card debt, despite the weekly chunk that is already taken out to pay for said heath care.

And while the ER rocked and both the medical and administrative personnel in both facilities were attentive and lovely to us all throughout the long LONG day, I now know that I will also need to change pediatricians for the kids. Some things you can just tell are into going to work the way you need them to, true?

Yes, this so could have been a lot worse. I am very thankful it was not. It came at the tail end of a really nasty week, however, and it knocked me for a loop.

Still, there were parting gifts:

This is our life, straight-out-of-camera (well, some cropping was done in the interest of privacy issues); linking to the SOOC action at Marvelous Mommy's blog.
Come on over to see more or join in.

Magic Marker Monday: Red Journal

Just before Winter Break, James brought home his writing log, which he calls his Red Journal. Considering he had trouble getting 4 letters on 1 page of paper last year, this is a Magic Journal for me!

Baseline, from September:

We have our puzzling days:

I see his teacher and aide's names there ...

 ummmmmm ...

"At school, the lights were not on. I feel bored. I went to speech with Jack. We watch -- "
 er, um, cheeus cager goose? This will keep me awake at night.

The ones that make my heart ache a bit :

Although I have to take the "worried" with a grain of salt, because:

Even though he writes he's mad, he enjoys the spelling practice at home and this is his usual result for spelling tests:

I also know that James reverses his pronouns (mostly on purpose, I believe) and mispronounces his own last name. He gets a big kick out of that, go figure.


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

                   
 
(and yes, I know it's Friday -- it's been a week)

Gifts on a Spectrum

It's Black Friday, and time to think hard(er) about gifts for the kids. Especially as big sister's birthday comes right before Christmas and James' is shortly after New Year's. Aaaaaand the property taxes are due right before then, so we really need to shop wisely because there's not much moolah to spare.

Add to that the fact that finding presents for James is a challenge. I've seen him rip and eat books, puzzles, and flash cards. He looks politely at cars and trucks, for the most part. If he can push buttons and have things light up and make loud noises, he's all over it for about 5 minutes at a time. Unless it's driving me crazy or waking the family, then make that 15 minutes, minimum.

He loves computers, clocks, and CD players. He also loves to rend them into pieces, if given half the chance. My little boy, the Destructor.

Some of the best toys for him have come from therapy sessions. We've gotten more mileage from an ice cream scooper and tongs with a bowl of cotton balls than the expensive LeapFrog read-along electronic gadget. It took 3 years before he became engaged with the super LeapFrog magnetic fridge Word Builder.  I could go on .... and end up with the sad memory of James' Christmas just before he turned 3, when he looked at the presents, but did not get excited about them, let alone want to open them. I seriously cried that Christmas morning because he'd recently been diagnosed, and this was like a knife in the heart.

But things got better. James became more engaged, and this year he's reading, doing math, and started some imaginary play. I've scaled back my expectations and become more philosophical about what will make this child happy.

I'm still thinking of toys, however!

So I was very happy to see this Special Needs Toy Guide by Emily Vanek, mentioned in Five Minutes for Special Needs.  We've already had good success with a number of items listed in her guide. There were some misses too, but that's because kids are different and special needs means, well, the antithesis of "one size fits all."

Oh yeah - he loved these things for years!

Here's what James has liked: Connect 4 and the piggy bank (although we just used a regular one that we had lying around the house). Sensory balls and ordinary balloons have been huge hits. My husband found one of those Fischer Price play kitchens at the Salvation Army and brought it home for our daughter.; both kids ended up loving it. James also loved the Singing Popup character toys.

He did not care for the large building blocks (or wooden blocks or regular Legos). He likes Play Dough but starts to crumble it all over into tiny bits. It's just not work the clean-up for me.

I think I'll take a more focused look at what James has liked. That will not only help me zero in on what might be good to get him, it could also help others.

What kinds of toys have been great for your special needs kiddos?