Planning For A Better Future

Part 1 of 2 sessions of the IACC Full Committee Meeting happened this past week. It is a relatively new government organization created out the 2019 Autism CARES Act to help inform the government about the needs of the autistic community - most importantly past the age of 21 to include information for a full life's span. 

Here are some topics that re standing out for me:

• Acknowledging trauma from denied or lack of services.
• Discussions around race - how is research being conducted and the need to consider that this can add layers to the needs of families and autistic people.
• The need to connect mental health with services for autistic people.
• The need to add training for medical professionals for dealing with and providing services for patients with special needs and autism.
• The lag between research and tangible services, changes, deliverables.

The committee also stressed the importance of local non-profits as a source of information, services, and partnerships.

The IACC website includes links and events happening in April for those affected by autism and the public-at-large.

I am glad to see this happening.

Autism and Fear and Change

I have been watching as much of the news as I can take, about the recent mass shooting at a school and deaths of students at the hand of a former fellow student. I am so angry right now about so many things. So worried for my son.

Right now, I am reading about a lot of finger pointing. I am feeling second-hand anguish and rage. Who is to blame? The NRA, and their insane support of proliferation of gun use and consumption in this country. The politicians, who take their money for personal and political and let gun control bills and laws die in committee, along with out children and students in our schools. The schools, who rubber stamped troubled kids out of their system when they became a disturbance -- why are schools expected to be the experts on this, by the way? The FBI, for not following up tips that he was ready to explode. About the white supremacists, who trained this latest killer and went on record to say they did, although surprisingly that is getting little attention from where I am sitting.

You know what I am also reading about? Again? Autism. Autistic male teen, shunned by peers, anti-social, living with mom as parents are divorced. They could almost be describing my son. Almost.

James right now is happy and still focused on games and media from his childhood years. While not living with his dad, he does get to see him and talks with him almost every night. His classmates still greet him with shouts and friendly waves. I could list all the ways my sweet sunny kid is different from the killers at Sandy Hook and MSDHS. It won't help the fear that colours perception.

Fear that can lead police and other first responders to take my son down, or make school administrators look the other way and pass him out of their systems without getting into the messy and expensive question of how to help troubled kids on the spectrum. Fears that could start making his classmates look at him funny, and start to wonder if he will ever become someone like they are reading about in the news.

Also, we have puberty on the horizon. I know something of what is going to happen once those hormones hit hard. Already at 13, James is taller than my 5' 7". I am doing my best to do right by him, so he can be as well-rounded an independent as possible. Plus, I know I will make mistakes. It feels a little bit like juggling nitroglycerine. Every day.

James is part of a wave that is about to swamp the end of the public schools and services section. Adult communities and our world at large - they are a little better equipped to deal with differently abled, but where is their place? What and who are their supports? Our schools have been criminally underfunded, under-trained, and under-staffed, even before Betsy Vos came on the scene and started trying to dismantle rights to access and services for disabled and differently abled kids. The regional centers have been under financial attack at the same time. Here in California, Jerry Brown has shut down centers for disabled adults with no replacement available.

I feel my anger, building over time at all the budget cuts, trying to be swept under the rug, and isolation from socialization ... growing as my government takes away health care, mental health services, and punishes me for being a single mom thinks that "thoughts and prayers" are going to do it.

Troubled kids, teens, and adults cannot be made invisible. Closing programs to help and support them to save money or putting them off into a funded program that is not equipped to handle them or out into the 21+ population at large and hope for the best? Only works so far.

I am furious and what is being done to all our kids. To my kid. Politicians, talking heads, and social media noisemakers: take "heart broken", "thoughts", and "prayers" and STUFF it back down your throats. We're not here to bump up your polls or ratings.

I call elected politicians in DC (have yet to get through to one - more and more GOP office are letting calls go to voice mail, whose message boxes are full). I participate in protests (it does help). I write to elected reps. I show up to IEP meetings, and call them when needed to advocate for my kids; I take notes and ask for services. I work with the doctors to keep my kids healthy mentally and physically. I see some great people and organizations out there. I participate in research studies - how else will we learn more about causes and things that can help? I have talked with community leaders about needs and services.

It really burns me: all the finger pointing and "not my problem/why should I pay for" mentality and lip service out there.

We are all in this together. Act like it.

I pay my taxes. I have worked almost constantly since I was 16. I vote - every danged election. And I am teaching my kids to do the same. And my biggest hope is that change is coming, to wipe out organizations like the NRA, KKK, Tea Party and the current status quo. Because the job you're doing just is not good enough. In fact, it's killing us. And we are realizing we don't have to keep sitting down and taking it.

Christmas Morning 2014

We all got to bed a bit late Christmas Eve, so I was able to sleep in until just after 6:30 -- yes!

James was first up. He was so excited: "Is today December 25th?" "Yes." "Is it Christmas?" "Yes." "Hooray!!! Angry Bird Season Christmas is open! Can I play my iPad?"

My, what Charles Dickens could have done with that one!

Anywho, we did all wake up a little after that, had some freshly baked scones, bacon, and eggs for breakfast (unless you were James, who had mini blueberry muffins and a scone). James did get excited with his stocking and presents:

James unexpectedly liked the snowman tic-tac-toe game. Not that he wants to play it with us, he just thinks it's neat and likes to fiddle with it. He also liked the hand rocket launcher ... until the fins started coming off the rocket. Then it was oh noes time and we had to hide them before he could calm down and move on to something else.

He really liked the Star Wars selection of bath soap - more for the figurine/bottles than happy anticipation of bath time, I'd say. He also liked the Star Wars reader book.

James does not like sugar or candy much. He does love the Trader Joe's organic lollipops - only the red ones, though! Santa's paper this year was SpongeBob & Co in Santa gear ...

  

He did like Fred from Big Hero 6 ... mainly because Fred dresses as an over-the-top monster who shoots fire sticks from his mouth. What is not to like?

James did a Happy Dance for his Robot and the Minion characters went on such a spin that I could not capture them on film. He also received a large amount of fabulous books!


Is he playing with some of these toys? YES! Not as much as I'd like to see, but he is playing. So that's a good thing.

First Day, of the Third Grade

Well James has started back to school. Not our best start, but he's in a great classroom with an awesome aide, so I have a good feeling about this year.

“Life is about not knowing, having
to change, taking the moment and
making the best of it"

No back to school pictures today, as the sinus infection hasn't quite left yet and anxiety had him literally twisting with nerves. Once he saw the kids (girls, really) in his class, he perked up. One of his previous classmates greeted him with a "Hi, James!" and a big smile. She's one of his favourite people, so I know that helped.

His aide reports he did a lot of testing behaviours with her, before settling down to classroom routine. They did flash cards, reading, and writing. Thank you!

I was a bit frazzled myself. The morning commutes go through 3 of the 4 construction projects currently in full swing. We were stopped to allow sanding of a road and cleanup from a crash and new parents froze at intersections. Thank goodness his sister got to school on time, James' school expected first day delays, and I'd let work know I'd be in late.

I did pick him up early today so he could get some extra rest, and he was definitely happier than the past few days. I saw a few side looks too from some kids who are new to James and the noises he can make. It was the "weirdo!" look. It's always something, isn't it?

Looking forward to a much better year than last.

Fear and Loathing Die Hard

After yesterday's post about Sunday's experience with discrimination during a school outing, I thought about how lucky we have been, for the most part. James is engaging and has been working with tight teams at school and in an accepting community. Our town is about to host its 3rd annual Walk Now for Autism Speaks fundraising event.

There are times when I get looks and overhear comments about about need for discipline/out of control behaviour.  Friends and family members make assumptions that sometimes hurt, but hey -- c'est la vie, eh? We are so much more supported by those around us than not.

That's why this article took the day down for me: Google Eliminates "Die" Search Suggestion for Autism. I know, from reading online comments on news stories, these attitudes are out there on a wide variety of subjects.

But really? All the screen shots below are from this afternoon on my own laptop. I started the search, and Google added what people commonly go for (I assume). How sad:

   

This one didn't look so bad at first, but on second reading, Google search took my phrase "people with autism should ..." and turned it into some really personal questions:

This pretty much captures the issue for me; for a very basic query to get more information about autism, the very first unpaid search result is an odd dictionary entry that looks quite different from the answer provided by a national organization that actually deals with autism and is pushing for more research and answers:

We are all so much more, those with autism, their friends and loved ones, and our world.  So thanks, Google, for taking a stand against hate speech.

I can only hope that parents, professionals, and those on the spectrum can help do their part by heeding the advice of Scoop Nisker. Go make those news stories good ones that show the people we love. Go, Flash Bloggers!

Follow Up: Support ... I Think

Catching up a bit here from a big shakeup or three in our family cosmos. Received this letter in the mail and wanted to share:

My first response was elation and a small frisson of delight. My first letter from Congress regarding an issue I'd detailed in an email to my representative! I know it's a form letter, but still.

Recently, I was able to read through it with greater concentration, and my reaction became a bit more ... layered. First, the second paragraph provoked an ironic smile. Yes, please tell me more about what autism is. Okay, no don't. I live with it and I believe that you, or at least your staff, has done its homework (at least until the fourth paragraph).

I had trouble understanding the next paragraph. I may have gotten a high grade in Civics and History back in, um, the 80s, but that doesn't mean that today I understand our legislative process (shame). Hello, Google -- let's take a few random legislative tours.

In particular, I was struck by the lack of detail in that third paragraph's last sentence (especially after the pithy summaries above) -- what does it really mean, when a Representative "supports" a bill? So I Googled H.R. 2005, and how Mike Thompson voted on this bill. Top results for me involved co-sponsoring of this bill. I learned one thing: Mike Thompson was not a co-sponsor. Query, what is a co-sponsor? Answer: link.

Okay, so a not being a co-sponsor does not equal non-support. Again, what did Rep. Thompson do to  "support" this bill?

I searched for his vote and found nothing. Curious. So I researched the approval process for this bill, and refreshed my memory on the journey of a bill. Thanks, Project Vote Smart! I verified that, per Rep. Thompson's letter, the bill passed in the House on September 20, 2011. A little more digging found that the reason I could not find a voting record is because the bill passed in the House by a voice vote.

Was Rep. Thompson one of those voices? I sure hope so, but he didn't specify that.

For the curious, here's an interesting look at how the bill was distributed to the House that September 20th (link to PDF file; bottom of page 10, you're welcome). And it you want to see the official Law (unsigned, but veritas in PDF format)? Here ya go!

I was not happy to see see autism lumped into "debilitating conditions and diseases" in paragraph four. While some sensitivity and physical issues related to autism may be debilitating, autism is definitely NOT a disease. You can't catch it from someone else. Bad form letter; no biscuit.

Last year I advocated that sb 946 be renewed to keep funding in place at our state's level for autism research and services. I sincerely appreciate Rep. Thompson's follow-through to report that H.R. 2005 was signed into law by President Obama (yay!) and the exact date of the signing. In an election year, it's important to remind constituents of how their interests have been represented.

A little more clarity on the "support" given to H.R. 2005 would have been excellent and I sincerely hope Rep. Thompson and his staff are aware that autism is not a disease. I am glad to see that one of my Congressional Representatives is aware that autism is a big issue to lots of families, and he's willing to go on record as a supporter of research and services to help those affected with autism.

Layers, I tell you -- but with a hopeful feeling, overall.

Listening Goes Both Ways

We've already heard a lot of name calling in the months leading to the upcoming elections.

Our governor has told us that to help balance the budget, we as middle class citizens will need to pay more in taxes.

The past two governors talked about having to cut costs by increasing our hardships --  many of us pay for our childrens' supplement for services on a reduced family budget, because funding has been slashed for the Regional Centers. Our schools are reeling from recent budget cuts and broken promises to replace monies already robbed from their budgets.

Our Congress seems more intent on religious and political vendettas rather than listening to their constituents, building consensus with We the People, and taking steps to preserve our quality of life now and in the future.

The presidential candidates don't seem to have those on the spectrum on their radar. This is not good, because in 10 years, the first waves of 1 in 88 children diagnosed on the spectrum will be adults. What will their lives be like? Where will they live? What jobs can they hold? What is our national plan to integrate them in society?

It's not Chick-A-Fil; it's about children.
Our children. Our future.
In a decade, 1 in 88 adults will be on the Autism Spectrum; will we be ready?

It's time for our politicians to listen to us, and those on the spectrum.

Please register to see how you can get involved and make your voice heard.

My confirmation of registry email.

This is how we start.

Where Is the Evidence for Autism Patient Care?

Paul Corby

I have been seeing posts around the blogosphere recently about Paul Corby, a young man with a congenital and deadly heart defect, who has been denied a heart transplant. There is a short list of reasons for denial, and number 2 on the list is ... Autism (link to story).

Quite frankly, I don't understand this. Why would Autism be considered a medical reason to deny a life-saving procedure? The rejection letter (that has been posted) provides absolutely no details or references scientific evidence why Autism is a contraindication for a major organ transplant.

A contraindication, by the way, is a condition or factor that may increase the risks of a medical procedure. Contraindications are absolute (as with proven dangerous results) or relative (where the results of the procedure are usually too complicated by said condition to be truly effective). I can't find a definition of all this quickly, by the way, I had too look through dictionary websites and a quick Google search with "Autism as a Contraindication" filter.

The closest thing I could find in my quickie online search was that some medicines used to treat anxiety and aggression are contraindicated in Autism patients with heart conditions (link to source).

So, without knowing all the facts, and being Jane Public (mom of a child on the spectrum), I am left with the impression that the doctors really don't know how Mr. Corby's Autism would impact the effectiveness of a heart transplant. They list instead complications of the complex procedures (which, I am pretty certain all heart transplant patients face) and "unknown and unpredicatable effects" of steroids on Mr. Corby.  Well, not being able to pump 80% of your heat's blood back out into your body is kind of a huge complication already and it predictably leads to reduced quality of life and a very short life span.

It sounds to me as though they'd rather not deal with all those unknown issues and complications.

It reminds me of hearing about how doctors initially recommended hospice instead of surgery for my grandmother, who at age 80, had a pretty advanced case of colon cancer. Part of their recommendation was tied to her age, and their experience that older patients in her stage either did not survive the operation or did not live long after.  They did, however, listen to her family and agree to try the surgery. Well, by day 2, that lady was walking the floor with her IV pole, doing laps. She had contests with her adult grandchildren to see who could blow her balls higher in her Mediciser and joking with the nurses. The surgeons later told the family she changed their perception of elder care and surgery recommendations.

It reminds me of how I've had to advocate for my son several times in a medical environment - precisely because (1) there is so little evidence out there on how to diagnose and treat patient on the Autism Spectrum and (2) Autism presents so uniquely.

We don't know much about Autism -- it's causes and effects on our lives. Many of us have had incomplete or incorrect medical recommendations for ourselves or loved ones. The only way to prepare our medical communities for the coming wave of diagnosed adults on the Autism spectrum is to start creating Evidence-Based Medical Practices and Guidelines for Autism patients NOW.

If you want to do more, there is an online petition being circulated online to Penn Cardiac Care at Radnor to put Mr. Corby on their transplant list -- please review and sign if you support this cause.

If you are an Autism parent -- keep advocating! Get second opinions. Support each other and help our communities to, in turn, support our kids on the spectrum. My thoughts and prayers are with Paul Corby and his family. I can only imagine the frustration and stress they must be going through. It is my hope that he and his family receive the services needed at either the Mayo Clinic, where they are seeking a second opinion, or Penn Cardiac Care.

(Thanks to Shelley at unlocking doors for her informative post on this.)

SpEd Special Agent - Wanted

So Comic-Con is wrapping up this weekend in San Diego. Being the big sci-fi geek that I am, I am enjoying what tidbits of news and photos I can score online.

It did get me thinking -- I'd love my very own Sci-Fi Hero to help me on my daily quests for truthful information about autism, social integration, and help in getting services for our son from our health care company.

You know who I came up with?

That's right, Cobra Bubbles.

Who would not want this upright, dapper, bad-ass agent on their side, during and IEP stalemate or dealing with a corporate double-speak runaround in an insurance enviromnent, saying:

"Let me illuminate to you the precarious situation in which you have found yourself. I am the one they call when things go wrong; and things have indeed Gone Wrong."

 And bring it home with a winning note of:

"IEP compliance. Include ABA Therapies. Good Day."

I get a big grin every time I think of it.

So who would you want for your SpEd Special Agent?

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.

Sleep, the Elusive Frontier

Ironically, most nights I'd sleep just fine ... if the kids would let me. James in particular has become a challenge. I had heard that sometime kids on the spectrum have difficulties with staying asleep and getting enough sleep. For the first five years, this was not an issue, unless James was ill.

Then November 2010 struck, and suddenly, I'd wake up and find James standing in the middle of a cold, dark house. Motionless, and setting the stage for catching a cold and making me worry that he'd unlock the door and take off one night.

Then he'd get up at ungodly hours and expect to start his day. As early as 3-frickin' ack-emma. S-l-o-w-l-y I got him into the routine of resting with lights out, quiet and door open (before 6am); lights on, door closed and playing quietly (between 6 and 7; iPad permissible after 6:30); play with iPad in or out of room or quiet video time (between 7 and 8).

I've tried some melatonin, with limited success. I almost welcome colds because then I can break out the Benedryl (or at least it's generic equivalent). I try to keep to a consistent bedtime and ensure that James has had enough exercise during the day. Being able to sleep through the night is still an issue.

The sofa and I have become good friends and I'm not exactly happy about that. Because now if I'm not in the sofa, James will yell for me nonstop until I appear and wake up the entire house. I know, I set that up to happen. Still have nightmares about the unlocked door though.

So I was really excited to read on Autism Speaks' blog that there will be a webchat titled Sleep Strategies for Children with Autism: A Parent’s Guide on February 21. Tips *and* a toolkit? I'll be there (unless I am so tired that I forget, in which case I'll still visit the website and get the toolkit).

Now, I am off to read my daughter some Charlie Bone, and snuggle up to the sofa.

A Love Note Most Precious

He was diagnosed with ASD. He was 2, almost 3.

Take time to mourn the loss of a dream, I was told.

They said our son might never speak verbally.

They said he was probably retarded, and might never be able to accomplish many things, including writing.

Look what our sunny kid did today in his mainstream class, along with his peers:

And you know what else? He looked me right in the eye and gave me a huge bear hug when he gave this to me. My heart is singing.

Theme Music

I forgot to note that James has added a new dimension to his scripting (also known as echolalia - scroll down the linked page to see a most excellent definition).

He now recites dialog for two people from movies and stories, because he is finally getting into play dates and socializing with his peers. He also likes to script movies when real life provides parrallels. Or just because.

This morning, for example, he had a phone conversation with his aide on an imaginary phone during our drive to his school. He did both parts of the conversation and I think this was part of his preparing himself for school. He scripts from Barney because I am sure he would dearly love to be part of that group in the mornings on weekends (shudder).  He might also be looking for a buddy, because he is scripting large exchanges between Buzz and Woody from the Toy Story sagas.

Max decoration that's going in his room.

He went through a couple of days of being mad (highly unusual for James) and recited huge portions of Where the Wild Things Are to me. Most notably "I'll eat you up!" And you know, it actually opened a bit of a dialog for us, so I could let him know I understood he was angry ... could he tell me more about why? Usually it had to do with me telling him "no" or enforcing bedtime. I could be wrong in my assessment of why he was scripting from that book, but I don't think so. It fits James' personality of being sweet, funny, and stubborn. I found this scripting endearing, as well as preferable to a sulky tantrum or swearing and throwing things.

Most recent and delightful to me: James has been humming the theme music to The Incredibles. Just before he takes off at a run. When he wears his beloved bear blanket. And the one that almost brought me to my knees with laughter: in the bathroom. That's right, taking a bath, toweling off after, successfully completing a toileting run, washing his hands ... duh-duh-DUH-da-dahhhhhh!

James, you are Mr. Incredible!

Two New Things More

First, James really wanted to hug and kiss me to say goodbye this morning at our back-to-school drop off. This was unexpected, new, and full of warm fuzzies (at least for me). He bounced right back into his routines and had a good day.

Second, I came home to get started on the kitchen clean up and noticed:

 I put this together with finding the kitchen scissors lying out of place on the counter this weekend and ... the boy's been cutting his own hair. Gah! He screams like a banshee and bucks like a tornado when I try to do it.

Speaking of things that will make him scream like a tin whistle ... behold, the deadly:

These, meanwhile, will make him cry:

He still has to eat some. This is when I turn up the radio.

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?

A Transcendental Day (& Night)

After 2 full days (and 3 nights) of James being sick and crying, I decided it probably wasn't the flu that was making him so sick. I called for a weekend appointment. Unfortunately, the earliest one was nearly 4 hours away.

Deciding to make the best of a rather crappy morning, I bundled up James and put him in the van, telling my husband that I'd take him for a drive until the appointment, so at least he and our daughter could get some rest. My head ached from lack of sleep, stress, and the prospect of several long, bleak hours to kill on the road with a sick, wailing child strapped in behind me.

And you know, instead I had a morning that I will remember for years to come. Absolutely amazing and gorgeous. The mist was slowly rising up off the vineyards, whose leaves ranged from light green to gold to flaming oranges and reds as they rolled over hills and filled the flatlands. The redwoods and evergreens were towering and dark green on either side of the road. The rising sun would cut in through the fog and light up dead moss and yellowing vines and leaves in the foreground. Despite worrying about James and being slowly driven mad by his toneless stimming, I enjoyed the heck out of all that beauty.

We stopped for a few minutes by the River, and I was able to take some photos. I held James for a bit in my arms, and we watched a commune of ducks as they flocked to food underneath a tree, quietly quacking to one another as they mingled and munched. We drove across the River on a beautiful little bridge and down a side street that was slowly being taken back by the redwoods. And darned if we didn't see ... a splatty witch, one of James' most favourite Halloween things ever.

Duck brunch.

On a bridge to Nowhere ...

Watch out for that tree!

We meandered down to Jenner and up the coast for a bit, then turned around and headed back inland to the med center. We arrived very early, and I used our steadfast double stroller to transport James. To keep him from driving the other patients in the waiting room mad, I strolled him gently up and down the corridors until our appointment came. Once installed on the exam room table, James' turned to exhaustion and he nearly fell asleep before the doctor arrived.

The on-call doctor was very kind and seemed to size up the autism and health situations with James very quickly, even though I am pretty sure he'd never seen him before. I was rather surprised to hear that James did not have the flu or tummy bug, rather the yammying was due to excess of phlegm, bronchitis, and the beginnings of infections in both ears. The doctor was very kind to me as well, saying that unfortunately, James had to kind of get to this point before he could be helped by antibiotics so I did well to bring him in today, rather than earlier or later.

So we got his antibiotics, pain reliever (suppositories, just in case), and albuterol inhaler and headed back to the van. As soon as James was loaded into his car seat, I gave him the antibiotics. Over the course of the afternoon at home, I was able to also administer the albuterol and some food (the doctor said he could even have dairy products). He rested on the sofa and I noticed he'd stopped moaning and doing the verbal stims. He told me that his throat had stopped hurting. He took a nice nap and took more food. Within half and hour of the food, he was sitting up and talking again. As I type this entry, he is singing along (in his own words)to a Baby Einstein video.

From my big purple armchair I salute Alexander Fleming, Edward Abraham, Clodomiro Picado Twight, and others who brought us antibiotics. The difference between James of this evening and this morning is literally like that of night and day. Between James feeling so much better and the unexpectedly transcendent morning, my day has undergone a transformation for the better as well.
 

In Which I email the Guv

Dear Governor Brown: As a parent of a child diagnosed with Autistic Spectrum Disorder I am asking for your help in signing sb 946 into law.

I am letting you know that our family has lost half its income, as I had to leave my job to help cope with the therapies, meetings, research, and paperwork involved with getting our son the help he needed. We are feeling the crushing financial stress of managing more needs on less money, with less services available to us because schools and regional centers are also trying to operate on severely reduced incomes that keep losing ground even as the needs of the families rise. All this in the midst of a recession and rising prices. We need help financially and hope that this bill can be the start of better partnerships with insurers and the government so that families do not have to bear the brunt of the costs in dealing with a rising national epidemic and shrinking income.

Additionally, I have sought help from our HMO, and tried working with them to see if they could help supplement some of the services needed by our son, with discouragingly little success. The main reason I find for this is not the front liner providers. Indeed, they have tried very hard to help us. Their hands are tied by the industry. I am hoping very much that the passage of this bill can begin to reform this trend.

Finally, I hope you pass sb 946 by the October 9th deadline, because we are all facing physiological deadlines with our children that we cannot change -- namely the fact that a human brain is much more adaptable up to age 3, and thereafter begins to drop off in its pliability. The  earlier interventions start with a child on the autism spectrum, the better the treatments work. They also do not have to be continued for as long, because the adaptation is easier to facilitate the younger the child.

I know our state is in a huge financial mess. I ask that you not sacrifice the health of the next few generations to effect a quick fix. I ask that you consider that, while there may be some increased costs up front, the savings against having to provide future, costlier, and more pervasive services to a fast-growing segment of the population are overwhelming, and the well-being of our society so much the better.

What I and other families are asking for is help, so that we can make better partnerships NOW so our children can live lives that are more independent and self-sufficient.

Yours most sincerely, James' Mom

(okay, I used my real name, but that's how I felt)

Send your message to the governor, California! And if you're wondering why I emailed him, it's because I care.

Parental Phone Activist

Okay, here goes -- I am blogging while making calls to Jerry Brown, Governor of California, to ask that he pass SB 946.

I am going to call several times and blog about the process. In part because I am fairly phoneophobic at this point and partly because I procrastinate well heading into the unknown (it's like whistling in the dark for me):

11:01 am. Busy signal. Okay, off to find the cool Dr Seuss-like illustration from Autism Votes that I saw on FB. Back soon ...

11:03 am. Screenshot captured. Dialing. Busy signal. Okay, now to get that picture into this post.

From the Autism Votes FaceBook page

11:05 am. Here goes something ... aaaaaand more busy. Hey, company! Keep on phonin'!

11:06 am: What the hey? Okay, busy! Get some more staffers in there. how about an anchor tag while I wait, so provide more bill info?

11:11 am - busy! Test the anchor tags ...

11:18 am -- stoopid code. Busy.

11:21, :22, :23 and :24 am: ditto. Where is the love? Will work on grocery list and keep calling. If I haven't got through by the end of my list, I take a break from calling.

11:25, :26 ... busy.

11:27 am -- hey, that's ringing! Pressing 1 for English ... Pressing 6 to speak with a staff member.  Recording that my call is being transferred. Holding. Listening to a recording that a staffer will speak with me shortly. repeat 5 times.

11:30 am -- speaking to a live staffer! very polite. I ask that the governor sign sb 946. As a parent of a child on the spectrum, it will help get him the services he needs now so that he won't need more later. I am assured that this message will be passed on to the governor.

I ask if there is anything further I can do to let the governor know how important this bill is to our families and many others like us. He suggests sending a fax to the governor's office or sending an email through the governor's website, being sure to select sb 946 from the drop-down menu. I thank him and we wish each other a nice day.

11:31 am -- hang up.

11:32 am - find governor's website and start email. I select that I need help and find sb 946 alllll the way at the bottom of the drop-down menu for PLEASE CHOOSE YOUR SUBJECT:

11:57 am -- email sent.

If you're reading this -- please consider calling and making your voice heard.

Autism Families: Becoming Represented

Hooray for the members of Congress and Senate for passing the Combating Autism Reauthorization Act (CARA) of 2011 by unanimous consent. Waiting to hear that President Obama has signed it into law. We need more research so we can find better treatments for our loved ones and future generations of children and people on the Autism Spectrum.

More support for research might also give us answers for how we might be able to prevent Autism from occurring among our children in such devastating numbers (currently 1 in 110 children; 1 in 70 boys).

As a long-term resident of California, I have been urging Governess Brown to sign SB 946. Thank you, California Senate President Darrell Steinberg for making this a serious priority.

No Grieving in This Autism House

I was reading articles online and came across a piece written by Susan Walton, regarding Autism in the family and the grieving process. In short, it is a rallying cry to view a child's diagnosis in a more positive light, rather than an occasion to grieve. Personally, I agree.

James jumping on his toes --
he sees the spinning rainbow
wheel outside.

I remember the time leading up to James' diagnosis as a haze of anxiety (something wasn't right), stress (job and family worries), and extreme frustration. I'd been worrying why I hadn't seen the big developmental jump at 18 months that I had with his sister; he still was not talking; he was beginning to scream instead, and even bite. His daycare, while concerning me about an overall lack of safety, did step up and tell me that his behaviour matched some of the Red Flags of Autism and that we should have him checked. His pediatrician then actually told me that James could not be autistic. "He can't be, he looks you in the eye," he insisted. True story. I had to insist that he call in a referral. Parents -- you can insist. Please don't hesitate to do it to help your kids.

So to hear from the Regional Center caseworker that there were indeed some developmental delays was not completely unexpected; it was kind of the bad news I'd been waiting to hear. I immediately requested and took 6 months of Family Medical Leave and plunged into HR hell with my employer's payroll department. Our family life was in limbo while we ferried James to five therapy sessions and a social playgroup weekly, waited five months to get get into the CAD Clinic for an official diagnosis of: Autistic Spectrum Disorder.

He's a sweetie, but look
at how he's holding his
hands & fingers ...

My husband and I were stunned. along with the rest of our family. Now what? What does that mean? Will our son ever talk? Will we ever feel the connection to who he is? How do we make sure he gets the help he needs to develop? These were some of the questions whirling in my head. Then I got a letter from our preschool, notifying me that, per paperwork submitted when big sister transitioned out, a place had been saved for James and they were looking forward to having him start in January, after his 3rd birthday.

By this time I knew James would not benefit from this program, even though we loved the staff and it was THE preschool where most parents wanted to send their kids.  I had to call them back and explain that James would not be coming. And why. Also, that's he'd be instead attending the Special Needs Preschool through the public schools system.

The staff was wonderfully sympathetic. Almost too much. Several advised me to grieve for "the death of a dream." That's when I pulled up, so to speak, and thought more clearly. Wait a minute. Why should I be grieving? At least I knew what we were dealing with now. And from reading about the range of impairments that could happen, I knew that James was lucky because he was healthy and liked people. He did not have to take any meds. There was a lot to be happy about, it seemed.

Since then, I have heard the advice and questions about grief relating to life with Autism. I still don't get why I should be grieving. We have our son. He is healthy and making progress, not suffering from something terminal. We have our moments of disappointment, semi-despair, and frustration ... but we have even more times of love, fun, and adventure.

Normal does not guarantee a happy life. Since we started on this journey, I have learned a lot about wanting what I have. One of the biggest gifts is appreciating how happy our sunny James is. I cannot count the times he's put a smile on my face with his sweet and mischievous ways. We celebrate major breakthroughs that may look like simple things and it carries over into our overall accomplishments as a family. So, no grieving over that diagnosis in this Autism house.