Support and Thankfulness

 "We know that this can be a stressful time for you. If you need additional help from a live person, don’t hesitate to call the Autism Speaks Autism Response Team at 888-288-4762 (Español 888-772-9050) or email us at familyservices@autismspeaks.org. " -- from Autism Speaks' blog post Five Things To DO While Waiting for an Autism Evaluation. 

James, before diagnosis, playing peek-a-boo

We as an overall population have all been learning. James had to wait 5 months for an official evaluation, that's how backed up the clinic was. The only people who could help immediately were the North Bay Regional Center, who did the initial assessment and immediately wrote purchase orders for speech (twice weekly), O/T, and multiple services from ELI (in-home development work , group play sessions, and parent classes). Through all these great agencies I learned on-the-fly and was given many tissues, hugs, and encouragement.

Things were so different then. His pediatrician told me J could not possibly be autistic "because he looks you in the eye".

Please share this link. Autism Speaks is not perfect, but it's trying its best to reach out and support across all 50 states. And the holidays can be so rough.

Thankful for all our help and blessings this year. For all our families and friends ... for every new skill mastered ... for every new person who understands just a little better what life can be like for someone otherly abled.

When Life Gives You Troubles ... Haiku

Loving and raising someone with autism means it affects you too. The isolation, intense parenting, truly soul-trying episodes you don't tell anyone else about ... there are many ways to deal with it. As I worked through my emotional storms, family fails, and life storms, I found that humour and creativity are great partners. 

Life can be ridiculous, as well as beautiful and heartbreaking, and normal is a setting on the washing machine. 

Putting the events of the day into words, in a semi-playful way help me separate from the overwhelming emotions. Back in the early days, when autism was making our acquaintance, I turned to online communities to compensate from the overall isolation and the Burbs' inability to socialize outside the box. Where I found other moms who had intensely real/surreal parenting experiences who were willing to share their poetic, coping efforts and support. 

Being creative is extremely therapeutic, as is listening to others vent with humor as a leavener. 

Autism Awareness Month: 2021

This year, fewer posts. Our lives are still full of remote work and learning, isolation, hard things, and too much paperwork. The pandemic continues, and autism never just goes away. 

This week, I came across this post, and words of wisdom, again, from Feda Almaliti. I can't believe that she and her son are gone. I will share her words, because they are positive and helpful. They also keep her alive in my memory and heart.

"You Can't Do This Alone", by Feda Almaliti

Click for the full article in the National Council on Severe Autism

Thankful Gathering

Want to see what happens when you make a friend at school and you sit together with your friends and families at a school event, where the support and caring are through the roof?

This.

Makes the fight worth it.

Love you to the moon and back, James.


Thank you, Anova!

Reflection, and A List

My wish list for a special needs caregiver retreat:

1. Location needs: Nature and quiet space to reflect and destress. Meals prepared and no clean up.
2. Speaker about why we’ve come, acknowledgment of what it is to care for someone with special needs. Importance of self care.
3. Workshops for reflection, de-stressing, self care. Can include Yoga/stretching/pilates, nature walks, meal planning, routine building or core essentials for schedules/routines.
4. Workshops for sharing advice/tips/support. Can include therapy sessions, writing groups and information sharing. Gather interest and contact information to form groups for advocacy for services, financial and conservatorship planning, tips to lobby government, and IEP workshops.
5. More quiet time. Maybe group building activities.
6. Group discussions/presentations: Dealing with stress, fatigue, and isolation.
7. Teaming up: Share resources, contact information. Build lists to build your support group. Get scripted.
8. More quiet time for reflection and de-stressing. Examine what renews you.
9. Ending Speaker. Sum up. Encouragement.

Repeat at least once a year. This caring is for life.

This grew out of a couple recent rare weekends when I was able to get away from my regular routine and be in nature.

I realized again the importance of just relaxing and taking care of myself, for a change. 

It reminded me of the retreats I attended while growing up  --  how much better I felt while attending them and afterward, even though I was much younger and life was simpler.

It also reminded me how, even in the middle of break-ups, endings and some of the most un-fun adulting stuff ever, being able to attend a group function with others who "get it" provides so much emotional release and support.

I remember a "before" time, when dance, hikes, socializing, music, and making art made me feel like Me. How renewed engaging these activities can be for me. How much colour and worth they give to this thing called My Life.

This Retreat is a good idea.

What does your Retreat look like?

   

Strong Love

Having James as my child has been an adventure. Our kids teach us new things and make us rediscover or see our world differently.

I've learned many lessons from both my kids - patience I never suspected I had, unconditional love I hoped I had, and how to be strong and not live in fear.

Especially so with James, who is autistic. Like many spectrum kids, he displays a complete disregard for personal awareness/safety that requires almost constant vigilance and nerves of steel. I can't tell you how many times I've seen (in my mind) his playful, laughing face looking backwards at me as he dashes out in front of a moving car and wham! seeing his light go out, and no more James. It's literally one of my worst nightmares, because we've had close calls. Every time we exit the car in a parking lot I have to remind him to wait by the car until we can walk together.

When he was younger, James would leave the house and go wandering off. Sometimes he'd stay in the yard, sometimes he'd wander down the sidewalk. I remember waking up one night and finding him standing in the darkened house right by the front door, tall and able enough to open the locks and wander outside. I've pretty much been sleeping on the sofa ever since that night.

Both my kids hated like poison to have water on their heads and having their hair washed. They freaked out in a pool or large body of water. They panicked if  anyone splashed water their way and did not like the unsteady buoyancy while in water. It's really difficult to describe the mental fortitude required to deal with these reactions to basic self care activities.

I was able to start my daughter's water safety early with Mommy and Me swim lessons. Her sensory sensitivity has not been as extreme as James'.  Still, it took over 3 years of swim lessons before she would put her head underwater.

James has been even more of a challenge to get used to water. Showers literally terrify him and he considers washing his hair as a form of water torture. I made it a point to take both kids into the pool with me during the summer. Countless afternoons we'd sit on the steps and I'd coax the down one more step, try a little splashing, and take them out into deeper water and get them used to floating with my hands supporting them. It's been a huge uphill climb and I come from a very swim-happy family. I am lucky to have had the opportunities to be persistent with water safety preparedness.

We live near a big river and like to visit the ocean, so I wanted to get them confident and learn how to be safe around water. I know that kids are attracted to water and wanted to help keep them safe. I did not know, when I started all my pool excursions, how dangerous an attraction water, wandering, and autism can be.

Sadly, I am learning (CDC report, in PDF format). Over the past week, I have read of 2 autistic children wandering off and being found later, drowned in water.

In particular, my heart goes out to a local family, the Lynches, who lost their daughter a little over a week ago. Seeing her pictures broke my heart a little. She was so obviously loved, and her quirky smile so beautiful and so like my son James'. 

   

It just kills me a little to realize she's gone so suddenly. Because that could so easily have been James. Because these special kiddos make a light in the world; they can be so difficult to manage and also so horribly missed when gone.

I know how strong my love has become for James and all his uniqueness, so I understand a little what the families are grieving and how much they have lost. This post in in support of the family of Mikaela Lynch.

If you would like to read more, please visit the FaceBook page An Outpouring of Love for the Mikaela Lynch Family, and show your support.

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?

Special Exposure / Wordless Weds: Wonder Ball

I've been working on the website for the Wonder League, updating it with photos from the games. I just kind of fell into creating the website and taking photos. It's been a blast!

Going to the games and watching all the joy, excitement, and plain social fun these kids and their families share is priceless, and makes me want to share it some more:

One of my favourites

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

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.

Autism Decorates!

Our town started a new tradition last year -- the Charlie Brown Christmas Tree Grove. It's a fundraiser to benefit the District's Schools and music programs. We were invited to come over and help decorate the tree for Autism Speaks (North Bay).

Wow! When we got to the Town Green, it seemed as if half the population was there. It was such an upbeat, energetic crowd of people happily decorating. I heard they have 150 trees this year. It's certainly become a big hit.

I was proud of James. He did a great job of talking with people and hanging ornaments. There was an unfortunate interlude where he ran off with someone's scissors and didn't want to come back, but he finally responded when faced with the count of "1-2 ....."

We enjoyed wandering around, checking out the other trees. Here are a couple of our favourites:

We enjoyed gelato at Powell's after, sitting on an outside bench with friends. I let the kids run across the Green to climb, slide, and jump at the playground on our way back to the car.

Simple pleasures. Such a good time.

Next April 14th. We will be walking again to raise awareness, research funds, and support each other. Hope to see you there!

Hope for Buddies and Friends

So tomorrow James and I will be walking in our second Walk Now for Autism Speaks event. This year it is so much closer to home -- yay! While we enjoyed walking at Infineon (with our pals the sheep and Shetland ponies) ... the driving will be so much less!

While we are walking to raise funds and have our own page, we are part of a local team called "Hope for Buddies and Friends." It is well named.

Hope is something that I as a parent cling to: hope for better studies and research; hope for help; hope for a good life for James.

Hope is how I feel when James has his breakthroughs, like becoming more self-sufficient, talking to his friends at school, writing numbers, or reading me a sentence.

Hope is where I need to refocus, when I get down about the metaphorical autism mountains yet to climb, discouraging news about budget and school cuts, or I go one too many nights without enough sleep due to my early rising son.

Hope is knowing there are answers out there. Hope comes from good friends. Love and faith keep us hoping for our other buddies and friends, whatever their struggles may be.

So if you're near the Windsor Town Green tomorrow, April 9th, come on out to see all the friends and buddies, walking for hope and a better future. There will be raffle baskets and information about autism-related services and studies. And if hope is something you want to get behind, please consider making a donation to James and his team.

I Picked Up the Phone

Here's something I've noticed. When things get tough, it become exponentially harder to ask for help.

I don't know if it's depression, the years growing up in a family that says yes to "can you ...." and no to "do you need ...", or the quasi-despair that comes over me when I try to imagine how to frame my request to people who mean well but have a life without autism issues.

Common sense goes right out the window. I feel like I am carrying weights with me and I can feel my forehead creasing like Roman blinds. I stop answering the phone, returning emails, opening letters. I don't care what I'm wearing and I read about 2 dozen books a week. Re-read them, because I don't go out. Going out somehow evolved into Getting Everything Done Just Right, compiling a major To Do list, assembling half a dozen items into a bag so I can take care of things along the way, and needing to lose 15 pounds before I can put on non-funky clothes and go anywhere. Kind of like those dreams where you run and run, and keep missing trains, dropping things, etc.

And it's not like people haven't noticed or try to help. Like a doofus, I just keep saying "no, that's okay, but thanks." I am becoming aware of just how much time has disappeared into this kind of white fog, and it's unnerving.

So I have started to be better about not thinking and jumping outward more. I pick a project a week around the house and focus on that instead of a book. I sit down and play with the kids a little more. I am going to the gym and working out, even if it means that I'm the only one there sweating my stuff in jeans and a t-shirt & ballet flats (because I can't deal with gym bags at the moment). I've been finding things I'd like to do. Me. I. For me. And then doing some of them. I've made inroads into my backpiled emails.

But by far the hardest thing for me to deal with is the phone. Seriously. I freeze when I hear it and wonder if I am going to pick it up or not. I hate returning calls. I cringe at the thought of calling someone. It's like my phone weighs 30,000 pounds, knows all my darkest secrets, and is waiting to blackmail me. Did I mention that common sense has left the building at this point?

So I am pleased to announce that this holiday, facing time with both kids on my hands and cold, wet outdoors, *I picked up the phone* and called a parent of a classmate of James': "What are you doing? Want to go somewhere?" And yes, they did. And we did get together with our kids and had a good time.

I think I'll try stickers next, to make the phone seem even less intimidating. Maybe Zurg. We have some of those around, I just know it.

SOOC Saturday: Coach

James is here with one of his first therapists. Like some of the people we've worked with, she's become a friend, and has watched James progress from being nonverbal and smiling at nothing in the distance to talking and interacting with his peers and others.

Look at this picture, for instance. He tried to get her pink phone, but she's got his number and held it just out of reach. Look what he's grabbed instead ... James smiles when he sees her. I hope he remembers some of the fun they had together, rolling balls and playing with gears and monster truck parts.

She's taught us a lot about working with James and hanging in there as a parent. She is one dedicated woman who gets out the word for programs and helps fundraise for the groups that really get out there and help the kids. I can personally attest that she is a lot of fun to be with on a team, fundraiser, or coffee break!

Thanks for being there, Ronnie -- and all that you do!

The Slurping Life knows that a little vino (& a lot of love) can keep la vida from getting too loco. Visit Melody and check out SOOC Saturday/Sunday entries past & present. No cropping or fixing -- it's life, straight out of the camera.



  

World Autism Awareness Day

If you've visited this blog before, you might notice a change in how it looks. In honour of Autism Awareness Month and World Autism Awareness Day, I've changed to design to blue, the colour of World Autism Awareness Day.

The United Nations has made April 2 a special day. I just have to pull out a quote from the Secrety-General's message:

"Let us also look within, and re-evaluate our attitudes and those of our societies so we can remove the prejudices that discriminate against persons with disabilities."
-- Secretary-General Ban Ki-moon
Message for World Autism Awareness Day, 2 April 2010

I'd also like to post that I will be participating in this year's Autism Speaks Autism Walk. Here is a link to my fundraising page. Please take a moment to visit for more information about the walk, why I am walking, or to find out how you can help.

Yes, awareness about autism is getting more mainstream, but there is a long way to go for finding answers and knowing what causes autism, understanding why this is happening, and being able to take steps to prevent it from our children being born with this condition in increasing numbers:

• The CHARGE Study at UC Davis
• Research and Programs to help with Speech and Language
• Advocating for our Children
• Community Support and Training for Educators
• Walking for awareness and answers

As a parent, though, I will always be worrying about how to help James and make the best choices for him (for as long as he needs me to do that). I keep reading as much as I can and trying to keep perspective that this is all work in progress. I will celebrate all the good times and triumphs. I will keep loving him and advocating for answers.

CATS Program & Why We Love It

During our first year of Preschool with James, my husband and I were still struggling with the whole concept of our son being on the spectrum with autistic disorder, as well as what that meant and what we could do to help and support James. His teacher told us about Dr. Lorna Catford and the CATS Program at Sonoma Statue University (SSU). We decided to give a call and find out more about it and what it could do for us.

A lot, as it turns out. The Collaborative Autism Training & Support (CATS) Program reaches out to professionals who work with children and families of children on the autism spectrum, as well as the children and their families. A series of seminars are made available to the public. The speakers are professionals in the field as well as families who are dealing with autism and other special needs. Students sign up for a semester of courses, seminars, and working in the field with families who signed up to participate. As a participating parent, I was welcome to attend seminars and could use the SSU library to do some research of my own, if I wanted to.

I got very excited when I found out about this. I talked it over with my husband, who agreed, and signed us up for the next semester that Fall. Our student was wonderful. She initially took the class because it was a good schedule fit and in line with her intent to become a teacher. She already had several years of working with children in a swim program at the local YMCA.

We ended up learning from each other, and had a great time taking the kids out to the heated, indoor pool at the YMCA to get them used to the water and to get James feeling a little more in touch with his body and comfortable about being in the water. It was nice for me to get some help.

An unexpected wonderful experience was being in a room full of loving and concerned parents, talking about our kids. We just whooshed with relief to be able to talk with people who had some very similar experiences!

The End of Semester Party the students put on was AWESOME! James loved it, and actually started participating in some of the activity centers they'd set up. My daughter won a raffle and staggered home under a gigundous bag of craft supplies. I was actually out after 5pm, sharing good eats and socializing. It was a wonderful feeling.

The program gave to much to us that we'd like to give something back ... so tomorrow there will be a fundraiser for the CATS Program at the Windsor Powell's on the Town Green. If you're around, please consider downloading and printing out a flier. All day tomorrow, 3/16, when you present this flier to Powell's at the time of your purchase, 20% of what you buy will be donated to support this wonderful, community-based program.

Easter candy, gelato, Mad Libs, clucking mechanical chickens stuffed with treats ... Powell's has literally thousand of good reasons to come in and browse. The CATS Program is a great reason to buy a treat or two tomorrow.