No Buts About It

All children, disabled or non disabled, deserve the chance to reach their potential

NO BUTS because his mother was “overwhelmed”

NO BUTS because his father was diagnosed with Multiple Sclerosis

NO BUTS because he is severely autistic and non-verbal

NO BUTS because autistic children are supposedly “unable to be in a reciprocal relationship”

NO BUTS because parents of autistic children “don’t really experience love” from their children

The last two are quotes from a CSU psychology professor who calls herself an expert on developmental disability and parent-child relationship (Ha!)

KILLING YOUR CHILD IS WRONG, THERE ARE NO BUTS.

Can you imagine telling your child “I understand why people kill their children” because they are disabled, because they are a burden to their families and society, because they are different, because they don’t express love the way we do … because, because, because ??? How many more children out there are going to be victims of violence and abuse for those reasons?

LINKS

• http://emmashopebook.com/2014/11/06/an-autistic-child-is-murdered/
• http://www.nbcnews.com/health/mental-health/jillian-mccabe-was-overwhelmed-autistic-sons-fatal-plunge-n241176
• http://eccentrickimmy1.blogspot.com/2014/11/not-again-justiceforlondon.html
• http://www.huffingtonpost.com/ellen-seidman/are-kids-with-special-needs-really-burden-to-society_b_1574351.html
• https://www.facebook.com/pages/Karlas-ASD-Page/155369821204141

New Year’s Resolution

I have trouble sticking to New Year’s resolutions past January, but I think this is doable and a great idea from Facebook.

There’s only one entry. I don’t want to fill up the jar by writing daily, plus writing an entry only when I feel truly inspired and blessed makes this a more realistic goal. I picked a lined notepad and plan not to go over four lines — hard copy version of tweeting. But it would be nice to get hold of colored paper to make the jar look more interesting.

All entries will be for and about our son. It would be nice if he could tell us what the best part of his day is, but this is something we’ve always struggled with. He does not always respond when asked “what did you do today?” Most of the time he will simply blurt out what he’s thinking about or currently doing. Like when he went on a full-day trip downtown with his class, and their teacher said they will be writing about what they did and observed, and asked them to name their favorite activity. I was a parent chaperone on that trip and even when I enumerated the events he did not elaborate on the details or identify which one he liked best. So this jar has extra-special meaning. Maybe 2014 is the year he’ll be actually able to tell us himself what his favorite part of the day is, and if not, well this is a good time to start this ritual.

Then some day he’ll be old enough to write his own entries.

• How to Clean a Candle Jar

Gingerbread Pirates & Dino Cookies

Two weeks ago we invited the neighbor’s kids over for a little gingerbread man activity. My husband made them from scratch and the kids got to decorate these, and brought some home for their parents and siblings. I decorated and brought the rest to his school for the staff.

Last night we made gingerbread cookies for school again. It’s my son’s turn to provide the snacks and bring his favorite Christmas book, which happens to be “The Gingerbread Pirates.” This time we used a store-bought mix, because sadly school policy requires food brought in to be commercially made, possibly for allergy reasons.

Now we have a bunch of dino cookie cutters, given as a present when our son was into dinosaurs for three years. When I tried to use these on the gingerbread dough he got upset. I couldn’t understand what he was trying to say, but to get him to do something else I asked him to draw what he’s trying to say. He grabbed a piece of paper and went to get his crayons. Then he saw the beige crayon and brought it back to me, “it’s peach, it’s peach!” he exclaimed, “dino cookies are peach!” So that resulted in picking up sugar cookie mix during our next grocery run. My son and I prepared them this afternoon, he was high from the success of his gingerbread pirates day. But when I tried to add green sprinkles on them he got upset again. I guess I have to try other ways to stretch that rigid/inflexible nature. “This is brown,” he reminded me as he held up the gingerbread boy cookie cutter, “and no sprinkles on dino cookies.”

Why I am not Shopping at Toys R Us This Christmas

Source: http://paulacdurbinwestbyautisticblog.blogspot.com/2013/12/boycott-autism-speaks-sponsors-and.html

Did my Christmas shopping thru Amazon today (Cyber Monday) instead of going to Toys R Us as originally planned. What’s wrong with Autism Speaks? I will list 3 of so many reasons here:
1) It does not have a single autistic member in its board of directors
2) Only 4 percent of its budget goes to family services
3) It is aligned with the controversial Judge Rotenberg Center which uses electric shock therapy against FDA rules and directives (currently investigated by the Justice Department)

Image is a red box that says:
“Every dollar spent is a vote for what you want to see more of in the world. Boycott Corporate Sponsors of Autism Speaks this holiday season and vote for love & acceptance of Autistic people.
Toys R Us* Build a Bear* Capital One* Panera Bread* Pump it up* Casey’s General Store* Queens Flowers* Coinstar* Scentsy* Continental Accessory* Shoprite Supermarkets* Dollar General* Springfree Trampoline* Dover International Speedway* Sprouts Farmer’s Market’s* FedEx* Stadium Nest Fragrances* Fox Sports* Stella and Dot* Gap* The Home Depot* Joe’s Crab Shack* TJ Maxx* Kid Natural Hero* Total Wine and More* Landscape Structures* Tsukihoshi* Mattress Warehouse* White Castle* Med Claims Liason* Zales* Modell’s Sporting Goods”

Also AMC and Comcast

Reasons to be Thankful

This year I am thankful that my family and friends back in the Philippines were spared from supertyphoon Yolanda, the 7.2 earthquake, and other calamities. Grateful that so many people are helping.
I am thankful that my husband got a job in a beautiful city, so we could live in a nice neighborhood where our son can safely play with other kids and pets, close to nature yet with access to parks and museums … and just 3-4 hours away from family.
Lastly I am thankful for the new people in our lives who care for our son: his teachers and the special ed team, and the family next door who bring him to Bible classes. Most signs show we’ve come to the right place after living overseas.

His IEP is still work in progress, but here are my references for advocating: http://www.livebinders.com/play/play?id=1164570

What’s Wrong with Autism Speaks

If you know someone who has an autistic child or is autistic please watch this.

What’s wrong with Autism Speaks? They produce videos like this, showing mothers discussing their frustration, of giving up their careers, of feeling judged for their parenting skills, the financial burden of raising an autistic child, of killing their child or committing suicide in the presence of their kid.

What this video shows is true, but only half the truth; it only shows pain and not the great love they have for their child. The video was shot and edited to focus on the negative aspects, and not mention those moments of profound joy, of cherishing the little things, of never taking simple pleasures for granted ever again, celebrating milestones like hearing their first complete unscripted sentence as if you hit the jackpot. Or how having an autistic child taught us so much patience, strength, determination, grace, and resilience we didn’t know we were capable of.

My Child is Perfect in His Imperfection

It snowed the day after his 6th birthday, almost as if God sent him a special gift. He has been asking for snow since July. Aren’t his tracks just lovely?

“Perfectly Imperfect

“We have all heard that no two snowflakes are alike. Each snowflake takes the perfect form for the maximum efficiency and effectiveness for its journey. And while the universal force of gravity gives them a shared destination, the expansive space in the air gives each snowflake the opportunity to take their own path. They are on the same journey, but each takes a different path.
“Along this gravity-driven journey, some snowflakes collide and damage each other, some collide and join together, some are influenced by wind… there are so many transitions and changes that take place along the journey of the snowflake. But, no matter what the transition, the snowflake always finds itself perfectly shaped for its journey.”

Steve Maraboli

Common Causes of Meltdowns

The Autism Discussion Page on Facebook is another wonderful resource. It offers strategies and explanations for making autistic children “feel safe, confident, and competent.” Some of the techniques actually also work for older kids and neurotypical ones. As a middle school teacher (currently on “sabbatical”) the ones in the “About” section is something I also find practical for students going through puberty: structured daily activities, visual strategies, slow it down/break it down, clarify-verify-preview-review, and clear boundaries & expectations.

Our son was 18 months old when we moved from Pakistan to Nigeria. All these causes occurred simultaneously for him and everyday was a constant struggle with him over almost everything. Changing clothes, eating, bathing, seeing us leave for work, leaving for school, brushing teeth, putting away toys, and going to bed all set off meltdowns. A PT/OT recommended a sensory diet and got us to buy the book “The Out of Syn Child.” It was a major eye-opener, and our son’s improvement was just as dramatic when we began addressing the causes of his meltdowns. We stopped blaming the child, stopped accepting the “terrible two’s”, stopped passively waiting for it to “blow over,” and began focusing on the triggers.

Source: https://www.facebook.com/autismdiscussionpage

Preparing for IEP

Two articles about working with teachers came to our attention this weekend. I summarized the key points of the first article in the slide above, and clicking on the image will take you to the full article. The second article is simply titled “Parents and the IEP.” My favorite points in this article are as follows:

• In real life, PARENTS know their children very well and are an excellent resource for teachers when it comes to understanding the kids as individual people, which is something we should all want to strive for doing to a T.
• In real life, TEACHERS decided to become teachers instead of choosing other careers for a constellation of reasons, one of the chief ones more than likely being because they care about children.
• In real life, a CHILD is a little person … You want to really know that kid, know what makes him or her tick.

As we advocate to get special ed assistance and services for our son I need to remember the “we are on the same team” line when it’s time to work on his IEP. It even applies to my husband and I when we disagree on what’s best for him.

It’s ironic, that even though both of us are teachers, we have not really been to an IEP meeting before. Part of the reason is because we’ve taught overseas for the last 12 years, and the other reason is our attendance as music and computer teachers is seldom required. The international school we taught at did not have a special ed program in Pre-K and K levels, so we have basically been doing home-based interventions with a privately hired therapist who aligned their sessions as close to what my son’s pre-k class was doing as possible. So as first time parents we really had a lot of catching up to do when we moved to the US and enrolled our son in kindergarten class this past summer.

The most useful thing we recommend is Wrightslaw. Don’t just buy their books, attend their seminar if possible, because this is where they will guide you through the important parts of the books.

Advocating for My Child

Months ago I stumbled on Karla Fisher’s Autism Advocacy page on Facebook, and re-created one of her many useful slides/handouts. She liked it enough to post it on her page as well. But I quickly realized that the divorce rate of 80 percent among parents was an old myth. WebMD published in 2010 that 64 percent of children with autism actually remain with both biological or adoptive parents, close enough to the 65 percent non-autistic children.

So I’m reposting those slides here with those corrections.

P.S. I don’t know why, but after years of reading everything I could find about autism and even taking an online class is making me anxious as my son’s IEP due date s approaching. Karla is making me think twice about many of what is written about autism, and my gut instincts often agree with her, because she is also on the spectrum. She is advocating for acceptance, for working with autism rather than fighting (i.e. finding a “cure”).