Saturday, March 31, 2012

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.

Autism Numbers Up - Why You Should Care

I've been catching the stories online about the latest CDC numbers for autism: 1 in 88 children; 1 in 54 boys. In some regions of the United States, the numbers are even more alarming, such as 1 in 47 children in Utah. Many people seem to think that better detection is responsible for a big portion of these higher numbers.

I agree that better diagnosis and detection are boosting the numbers, but that does not address the initial cause of autism. It seems logical to me that the growth in the number of children diagnosed with autism would not be so steadily climbing without some other underlying causes, such as environmental factors or genetic factors.

My own personal belief is that there is not one answer, but several, and that it may take one cause or a combination of them to cause autism. I also think that modern living and its byproducts are somehow causing more frequent occurrences of autism.

These are guesses, based on personal observation and reflection. What we all need is scientific research to track down causes and patterns. I'd love for parents to be partners in this, because many of us have been living with autism longer than researchers have studied it.

Think about how many children are on a playground, a classroom, a school, in your family. Think about schools being required to provide services while their budgets are slashed and training is reduced. Think 10 years in the future, if the numbers continue to increase. How many of these children will be autistic? Think of what happens when autistic children turn 18, and are largely cut off from services and resources. How well prepared will they be? We as a society need to care NOW. Parents need more information, and better resources to prepare their children for as full and independent a life as possible.

We need better supports and services, because the best practice right now to address autism is early detection and start of therapies and treatments. Not only are they effective, but they also reduce the need for services later. I don't think that parents who have navigated bureaucratic processes want to continue it for a lifetime. I think it's pretty safe to say we's like our kids to need as few therapies and interventions as possible. Also, trained parents can be an awesome component in their child's treatment.

We the parents need hope as we grapple with rising inflation, foreclosures, job losses, marital stress, social isolation, cuts to schools and regional center programs, and denial of services by our health care coverage. Not to mention bickering politicians in an election year.

What can we as parents do?

  • Continue to advocate for services for ourselves and children. 
  • Network for successful therapies and resources. 
  • Write and call our elected official and continue to let them know we are a growing segment of their constituency that has needs and wants to one day be self-supporting and independent.
  • Raise awareness by speaking up and out about autism and what it mans to you and your family.
  • Support each other with in-person and online support groups and activities.
  • Love our families and laugh as much as possible; smiling is good too.
  • Set goals and learn from what does or does not work; allow space for growth and change.
  • Don't be afraid to tell providers and educators what you need for yourself and your children. I have been amazed how powerful a clear statement of needs, reinforced with polite insistence, can be.

If you are not a parent of a child on the spectrum, and have been reading the headlines and wondering about it, please consider becoming more informed and helping. There is certainly a need for it! 
  • If you know someone who has a family member who is autistic, talk with them about it. Listen to them. Think about what you might be able to do and then act as you can.
  • Make a contribution to an organization that helps with autism. Autism Speaks is a very good voice for the autism community, and raises money for more research.
  • Support local non-profits, who are not only front-line providers, but have had their funding majorly slashed. If you look at the right column of this blog, you sill see the non-profits who help us. Here is a more generic list: Regional Centers, Easter Seals, Cerebral Palsy, Scottish Rite, and your local public schools
  • For school-aged children, the two biggest providers of services are the Regional Centers and the public schools system, and their budgets have been decimated by state budget cuts and are the first to be targeted every year for subsequent cuts. They are hamstrung, even as demand for services rise. They need your help! Support for services sooner means a greatly decreased need for services later.
  • Support can mean donations of money, time, or materials. You can call or email to find out what these organizations need. 
  • Volunteering can mean so much. It looks like giving your friend/family member a break - even 20 minutes is great for a run to the store, a real shower, or a power nap. Non-profits need volunteers to staff and run fundraising booths at events. I personally have volunteered my services to create websites, brochures, and graphics, as well as edit marketing materials and make presentations to groups and committees.

Friday, March 30, 2012

Back Yard Therapy

James continued his recovery today. He ate better than almost all this previous week, drank lots of water, and downed a lot of Miralax with his milk. In fact, he had so much energy yesterday, that I let him go back to school today.

My! He was a happy guy. His aide reported that he had a fantastic morning and worked well. He just started to fade after lunch, at which point I picked him up. Early this evening, he passed his first bowel movement in a week. I had to call my mom and shout "Yahoo!!!"

Tomorrow we go to a funeral. James will actually stay at home with Respite, as the long car trip (5-6 hours R/T) would bring on the constipation again. I have explained the new schedule tomorrow to him, and plan to talk about the funeral this weekend. I found some social stories online and will tailor them for James.

Meanwhile, life goes on. I did my yard duty shift, signed up James' sister for swim classes this summer, and attacked a mountain range of laundry. I took a backyard break, to admire the Spring that is trying mightily to break out amidst some very cold, wet, and fickle weather. In the back of my mind is the person who is no longer here in body.

Wednesday, March 28, 2012

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.
5 Minutes for Special Needs

               and ... Wordless Wednesday

Tuesday, March 27, 2012

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.

Monday, March 26, 2012

Day Five of Not So Great

Twenty-four hours, two Advice RN calls, and three phone MD consults later ...

James is still in pain, moaning, and yammying. He is drinking water, walking, and proving he's hydrated in the bathroom. He won't eat, however.

So I am trying to keep him hydrated and on the anti-nausea meds (we run out tomorrow).

Besides being upset that my son has been in so much pain for four days, I am getting frustrated with the tag team of medical records. His new pediatrician called today to check-in, which I appreciate. She then questioned his diagnosis of Autism, quizzing me as to who did the diagnosis and who was tracking his progress?

What. in. the. frickin'. who?

It's almost like being asked to provide a certificate that proves I'm the mom, seven years after the fact.

On the one hand, I am trying to see this as a doctor who is doing her homework before seeing a challenging patient the next day, as well as an opportunity to educate a whole lot of medical personnel about Autism, and working with patients and families on the spectrum. I do a lot of counting on this hand.

On the other hand, I want to yell: "What, just because one of the HMO docs didn't diagnose him as Autistic I will constantly have to remind you of the fact that I asked to get a second opinion and a whole panel of professionals (twice, if you count the MIND Institute) told me: 'yes, your son is Autistic and has some severe developmental delays' ?!?!"

I am sure that's not how it was meant but boy howdy, that's how it sounded.

P.S.: The tracking his progress is funny bureaucratic nightmare kind of way, because they have denied  requests for services that would bring them onboard James' team and allow them to both facilitate and track his progress.

Magic Marker Monday: Pete the Cat

James brought home this fun little illustrated story just before Spring Break. His teacher said that all the kids loved reading about Pete and his tennis shoes!

That's one cool cat
Nicely done - way to go, James!

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

          Special Needs Blog           Photobucket

Sunday, March 25, 2012

Sunday Trip to the Med Center

After sleeping beautifully for two 10-hour+ stints and responding to OTC pain meds, I settled into waiting out the GI bug. I called in sick to my work shift and sent an email to James' teacher.

Then James started crying and moaning again early this morning, and I could not get him started on the acetaminophen. He ate only a little and drank less than yesterday. I asked him to point where it hurt and he consistently pointed to the right side of his abdomen.

So I called the advice nurse, who confirmed there was no fever, no yamminess (a polite euphemism for result of nausea),  and that he could walk. She booked an telephone appointment with an on-call doctor for later that day. This is a person who knows James, so I felt better about talking with them.

We had our call, and to be on the safe side, she had me bring him in this afternoon. After a friendly and thorough exam, new diagnosis is: constipation. Back to square one. We did another blood test just in case, and this one did not go smoothly.

I am now trying to figure out how to get mineral oil into James without triggering his gag reflex. And not pound my head against the wall until all is calm once more.

Deep breaths ...

Saturday, March 24, 2012

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.

Monday, March 19, 2012

Susuwatari Tree Surprise

The last few days have been good ones around our boy. I feel as though a couple of layers have been peeled off and I am seeing more of James Inside.

This weekend, for example, during a trip to the library, his face lit up as he got out of the car and he started calling out "I see them! I see them!"

Me: "Who, Honey?"

James: "Soot Sprites!"

He was pointing up to the tree next to our parking spot:

Son of a gun! So I grinned and we both started yelling "Come out, come out, whereEVER you are!!!!"

This sounds kind of banal, but I know that while James might have made the connection and thought about this before, he could or did not vocalize it, and play along with me.

I love not just feeling his happiness at being alive, but also being able to play with my buddy. It's rather like the difference between feeling a warm fire and playing with a really cool sparkler.

Magic Marker Monday: Irish Card

James' grandparents have a dog that was born on St. Patrick's Day five years ago. This makes for a great excuse to get together and celebrate St. Patrick's Day for my family, which is all Irish on my mother's side and almost always up for a party.

Even though James is afraid of dogs, he likes visiting Nana and Apu's house. Big Sister, however, is a Dog Whisperer, and loves all animals. She made a wonderful birthday / Irish card for the celebrated hound:

Copy paper, ball point pen, origami and scrapbook papers. Glue stick and scissors. Imagination!

She made him a cake too, out of dog biscuits, cheese, and carrot slices. What a lucky dog!

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

          Special Needs Blog           Photobucket

Saturday, March 17, 2012

SOOC St. Patrick's Day

All this week the kids have been building and checking out leprechaun traps, footprints, and gold pieces. Had so much fun watching I did not take pictures.

However I did get to thinking about my trips to Ireland. Unfortunately, I lost most of my photos in the Oakland Hills Fire, but I do have a few copies from friends.
Beautiful St. Patrick window from St. Peter and Paul church in Athlone.
Copy of a print from my Kodak film days, circa 1987.

We will celebrate the day later with my father and my mother, whose family came from both Northern (Omagh) and Southern Ireland (Athlone). I did not meet any family in Athlone, but I was fortunate enough to drop in on a surprised, related couple out of the blue in Omagh. They were wonderful, giving tea and a tour of the local graveyards to myself and my traveling companion. What lovely people. Oh the stories I heard about the family!

I wish they and my grandmother could have seen James, wearing his Irish shirt and dancing for joy outside the library this morning. This guy has enough charm and blarney to rival a native. And don't forget, he loves to sing and be with people as well:
Makes me wish I still had some photos from  my Irish dancing days.

Getting on my Irish and joining in the SOOC action at Marvelous Mommy's blog. Come on over to see more or join in!