A post from Autism Daddy...

www.autism-daddy.blogspot.com
 "A Letter To The Dads That Left Because Of Autism & The Ones That Are Thinking Of Leaving... (from a dad who stayed)" 

I hear alot on my Facebook Page from women who say that their husbands bailed out on their families/ marriages due to the stresses of autism in their lives. And every day I see another new Facebook page from single autism moms like "Single Mothers who have Children with Autism" and "Tales Of A Single Mom Raising A Child With Autism"


The whole thing, the idea of leaving your family due to a disability sounds so completely bizarre to me that I thought about writing a letter to these dads... And here it is...

A letter to the autism dads that left and to the ones who are thinking about leaving....


________________________________


Dear Dads,

Let's get something out of the way right out of the gate. Let's admit it. Let's call a spade a spade You were a jerk already, before the autism, right? You probably would've left for some other reason. It was already in your DNA to be a loser, right?

Let's be honest, if you didn't have a kid with autism I still don't think you'd be winning any father/husband of the year awards...

If you leave your wife and family cuz of autism then I'm betting you probably never would've been satisfied with your life /marriage and probably would've bailed at some point no matter what the circumstances or stayed and been miserable and/or a jerk. Because if you honestly left your wife and family solely because of the hardships of life with this condition than you are not a man. You are a weasel.

I mean if your kid had cancer would you have left? Would you have left your wife to deal with all of the stress alone then? Or what about some other disease/ disorder? Or what about cerebral palsy or down syndrome? Would those have sent you running for the hills? Or what was it about autism that scared you off so much?

I mean I get it fellas, you may not be able to have the "typical" family life you were always expecting. You may not be able to take your kid to the ballgame, or play catch, or a million other things, but "WAAAA!" stop crying and get over it... And do something to be happy! I mean what else are you gonna do? Try again for a typical family with another woman? What if the autism is in your genetics? You gonna keep trying to you get it right?

Now if you already left and divorced your wife. It's not too late to step up and be a man and be an integral part of your ASD kid's life.

Learn more about him. Learn what makes him tick. Take him more often and give your ex-wife a break more often. Take your kids for an extra weekend here, a week off from school there. Give your ex-wife a small chunk of the peace and quiet that you get all the time since you bailed out.

But when you do have the kids please abide by the rules your ex-wife has set up. You bailed out and left her in charge. So now you have to accept the decisions / choices that she's made. If she's got the kids on the GFCF diet, stick to it even if you don't agree with it. If she's got rules about how much tv they can watch abide by it. You gave up your right to help make those decisions. The least you can do is follow the rules / protocols she's set up. RESPECT HER CHOICES.

And also try to be a unified front both in your parenting of your kids and out in the world. What I mean by this is even though you're divorced doesn't mean you shouldn't show up to your kid's IEP meetings or open school nights or other important events like this. Even if you're out of touch on the details just showing up as a sign of support and solidarity goes a long way!!

So if you were a loser who bailed on your wife / family because of autism, it's not too late for you to step up and be a real man! You can even start today! Instead of going somewhere to watch the NFL Playoff games today call your ex-wife and grab your kids for the day and give her a break. You can always DVR the games and watch them tonight. I know you don't want me to let all te women in on our little secret... But all us men know that if you remove the commercials, timeouts and halftime the average football game can be over in about 52 minutes.... :-) So now you've got no excuse not to start today!


And to the dads of newly diagnosed kids with autism that are thinking about leaving...


Stay.

You don't need to reinvent yourself and become this super amazing autism dad. That's not what your spouse is looking for. Just be a wee bit better than the husband / father you were before autism hit.

If you were the kinda husband / father that went out 3x a week with the fellas, poker one night, golf on Saturday, football on Sunday, then that's the precedent your family dynamic has set. So when autism enters your household don't think your wife is looking for you to drop everything, just drop one of them, maybe two on stressful weeks.

And then pretty much do all the things I suggested to the divorced dads above. Be more involved, be a unified front, respect her decisions, etc, etc.

But if you are gonna stay in the marriage you have to be there. Be present. Don't stay if you're gonna stay and be miserable and distant and drag your wife down with you.

I would leave if I felt i was dragging my wife down. But first I'd try to make myself better, thru drugs or running or something. Read this other post of mine with more tips and pointers on how to be happy in your marriage when autism comes along.

And to both the dads who bailed because of autism and the dads who are thinking about leaving because of autism... the fact that you are reading this is a big step. It's not too late for you to make things right and to step up a be a real man, a true father, a good husband or ex-husband. Just take the first step. And if you ever want to chat about things or need a male shoulder to masculinely cry on :-) please join my Facebook page or email me at autismdaddy.fb@gmail.com

Sincerely yours,

Autism Daddy

When the Disability Community Works

We're used to outrage in this community, of hearing or reading a story and running with it. Sometimes, it's to attack and condemn other parents or individuals, but sometimes, when the disability community works well, it's to gather together to bring about change, to fight for a family.

This time, it's to protest a doctor at CHOP who told a family he would not recommend a transplant for their young daughter because of her cognitive disability.

The mother, Chrissy, writes of this horrifying conversation at wolfhirshhorn.org in a post titled "Brick Walls." We can all imagine ourselves in this situation, but even this imagining cannot come close to the sheer terror, rage, and grief that Chrissy and her husband must have felt.

In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”

The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”

“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”

“Yes, but it is different for her. She is already brain damaged and mentally retarded.”

He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your famliy are with Amelia.”

The community has rallied around this family, inundatingCHOP's facebook wall with comments decrying this doctor's actions and demanding action. A petition has been set up at Change.org. People have been using their blogs to spread the word and advocate action. It is our community at its best. Let us hope that it will help this family quickly have a positive resolution. I encourage everyone to offer support to this family and to sign the petition. Like her page at facebook and show you care.

What follows are a list of the blogs dealing with this topic, which I will keep updated as I come across new blogs. 

Age of Autism 

Autistic Hoya

Big Blueberry Eyes

Bird on the Street

BLOOM - Parenting Kids With Disabilities

Donna Thompson

Healing, Empowering and Thriving

Jewish Journal

Journeys with Autism

Kidneys and Eyes

Kristina Chew at Care2

Life With my Special K's

Little Bit Quirky

Love That Max (links to contact info at CHOP)

Moonlit Lily

Not Dead Yet

Parenting Isn't Pretty

Penny's Peeps

Raising Asperger's Kids

Really What Were We Thinking

Social Security Disability and You

Special Children at About.com

Special Education Advisor

Support for Special Needs

Susan's Blog

The Loaded Diaper

Three Puzzle Pieces

Uncommon Sense

you-leave-me-breadless

Please let me know if there are blogs I've missed.


From CHOP, new comment on their facebook page:

Children's Hospital of Philadelphia

To our Facebook community:

We hear you.

We feel and understand your frustration, but we are unable to comment publicly on individual cases.

Each child is unique, and our goal is always to provide the best possible medical care for each individual patient.

Please know that CHOP strives to partner with families and make appropriate decisions based on input from many sources, none more important than the patient’s family.

Anything less would be completely inconsistent with the values we work to uphold every day.

We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.

The Children’s Hospital of Philadelphia is an institution. But more important, we are a team of men and women whose life’s work and greatest passion are the care of all sick children and the support of their families. To be entrusted with the care of these children is a privilege, one we take with the utmost seriousness.

Let's hope that this will lead the ethics committee to careful deliberation and this doctor to reconsider his beliefs about those with cognitive disabilities.

Showcase: Gabrielle Kaplan-Mayer

Cooking to Connect and Communicate

By Gabrielle Kaplan-Mayer

www.kitchenclassroom4kids.com

We are fortunate that my son George goes to school just half a block from our home at our local elementary school. He is an autism support classroom there, but our school district makes a great effort to include George and his classmates in school events (Cheltenham's record on inclusion is one of the reasons that we bought a home here several years ago). This coming Monday, the school is hosting a service day in honor of Dr. Martin Luther King, Jr., as so many schools, places of worship and other organizations are doing.

One piece of the service day that Myers Elementary is sponsoring is for families to bring a home cooked food that will be delivered to a homeless shelter. This is a project that my son will be able to engage in—and enjoy participating. We have been cooking together since he was four years old and I share our experience and the benefits of cooking together in my children’s cookbook “The Kitchen Classroom.”

I will cook this at home with my kids on Sunday afternoon. It makes me happy that my son can be of service to others through helping to prepare food. I know that many of the themes of Dr. King day are too abstract for George to understand at this point in his life, but I absoluetly believe in the value of instilling a foundation of doing service in him, just as I do with my daughter June. It would be hard for me to take George to do some of the other big service projects in our area: the sheer number of people and the noise generated in the space where the service will take place could easily overwhelm him. But cooking for others at home in our kitchen is the perfect kind of service for us.

George, like many other children who have autism, is especially loving and it is interesting to me to watch the way that he doesn't notice a person's skin color, their size, whether their clothes or old or new. Both of my kids go to schools with diverse populations and are growing up in a neighborhood where people of different backgrounds mix happily and easily. George's autism has brought me into the incredible world of parents who have specail needs children, where I frequently meet people from different faiths, cultures and socio-economic backgrounds, with whom I have so much in common with. The bond of having a child with autism helps us to quickly relate to each other's lives, despite the differences.

If your community is not hosting a service day, make these veggies and take them to a local shelter or food kitchen. If you want ideas for other great recipes to take to a shelter, pull out your copy of The Kitchen Classroom and make a big batch of Mama's Meatballs (p.77), a pan of Carrot Coins (p. 94) and some Favorite French Fries (p. 96). I think they'll be a hit with the diners!

And make yourself a batch, for goodness sake.

Ingredients:

1.           8 Potatoes

2.           1 clove garlic

3.           5-6 turnips

4.           10 carrots

5.           1 bunch celery

6.           Salt & Pepper

7.           Olive Oil

1.                 

2.                You and your child can preheat the oven to 400 degrees F.

3.                Your children can wash all of the vegetables (no need to wash the garlic).

4.                A grown-up can peel the turnips.

5.                Using hand over hand, help your child cut the potatoes into 3-4 big chunks each. Put in a roasting pan.

6.                Your child can separate the garlic cloves. Help your child pull the skin off the garlic (you can loosen it with the tip of a knife). Put the cloves in the roasting pan.

7.                Using hand over hand, help your child cut the turnips into pieces. Put in the roasting pan.

8.                Help your child peel the carrots (tips for this process can be found in The Kitchen Classroom on page 95). Chop into coins and put in the roasting pan.

9.                Help your child break the celery (tips for this process can be found in The Kitchen Classroom on page 92). Cut into small pieces and put in the roasting pan.

10.             Drizzle with olive oil.

11.             Sprinkle with salt and pepper.

Bake for 45 minutes. Every 15 minutes, gently turn the vegetables so they all get well coated in oil.

Gabrielle Kaplan-Mayer is a cooking instructor and parenting coach who works with families all over the world. You can reach her at www.kitchenclassroom4kids.com

Showcase: Catrina's Good Morning Autism!

Please click here to go to Catrina's blog.

Mornings blow.  We all know this.  Wouldn’t it be wonderful if we could all just wake up and jump out of bed and be happy, and cheery, and ready to take on the world?  Ahh, but that isn’t real life, is it?

I’m a neuro-typical adult, and I know mornings are bad for me.  Just imagine how a morning for a child with Autism can be.

Below is a video of a mother that is facing jail time because her child with Autism has been tardy to school too many times this year.

Please watch it … and then continue reading.

 

After I watched this video, I sat here thinking … and worrying … and thinking … and worrying.

Timmy has quite a few tardies already this year.  It’s not because he is lazy and won’t get out of bed.  It isn’t because I’m lazy and won’t get him up and out of bed.  Each and every one of them was due to his Autism.

The Belt – Timmy has to wear a belt every day.  We have a routine that he follows when he gets home from school.  He takes his belt off and hangs it on a hook.  I wasn’t home one day when he came home and my husband didn’t instruct him to put the belt on the hook.  The next morning, the belt was nowhere to be found.  His bus comes at 730.  He was ready for the bus at 7.  He didn’t have his belt, though.  He was crying and we were looking for it.  Finally I told him he’d have to go one day without it.  We’d find it for him that day and he’d have it tomorrow.  He walked out of the house crying to go down to the bus.  When he saw the bus, though, he started screaming and hid behind my van.  He refused to go down. He missed the bus.  He ended up being tardy that day.

The Necklace- After “The Belt” we made sure to have EVERYTHING ready for him for school for the next day.  Clothes laid out.  Backpack all packed, etc.  The day before, Timmy had received a necklace from a party at school.  It was one of those cheapy mardi-gras type necklaces.  He had decided this was his new favorite thing.  When he had gone to bed that night, I had told him he couldn’t wear the necklace to bed.  When I tucked him in, he didn’t have it on.  All was good.  Except he had hidden the necklace away so his brothers wouldn’t find it, and the next morning he couldn’t remember where he had put it.  And …. we had a meltdown.

Have you ever witnessed a child with Autism have a meltdown?  This isn’t just a tantrum that a NT (neuro-typical) person has.  They honest to goodness think that the world is going to end or something.  They cannot see past this one thing.  This one thing at this time was that necklace.  Nothing, and I mean NOTHING mattered, but that necklace.

And so he was tardy again.  (Mind you, while trying to deal with his meltdown and help him find his necklace, I’m still getting the other two boys ready and out the door to their bus that comes 15 minutes before Timmy’s).

These are just two instances.  We’ve had others that centered around … socks that were “pokey” to him.  We changed his socks 6 times, and all of them felt “pokey” to him.  We finally found a pair that he was comfortable wearing.  Him getting down to the bus and realizing that there is a tiny little water spot on his pants.  Being upset because his brother ate the last of the Fruity Pebbles and only left him Cocoa Pebbles, and even though he had Cocoa Pebbles the day before with no issues, today he will.

Oh yes, I can hear some of you saying “You are just letting him be a brat.  You need to not let him rule like that.”  I say to you … “You don’t have a child with Autism, and don’t understand.”

He is not manipulating.  I know what manipulating is.  I see it in children (including my own) quite often.  Timmy’s world STOPS.  Just stops.  There is not school.  There is not work.  There is not ANYTHING that is more important to him at that moment.  You can try to redirect.  You can try to talk him down.  Sometimes it works.  Other times, no.  Especially if I miss the warning signs and don’t get it taken care of before the meltdown goes ahead at full steam.

We get up with plenty of time for he and his brothers to get ready for school.  We get things all set up the night before, and I set breakfast up and make lunches and pack backpacks in the morning before they wake up.  This isn’t a scheduling thing.  This isn’t a lazy thing.  This is an Autism thing.

I believe the mother in the video should get a good lawyer and fight this.  I believe that a good lawyer that specializes in special needs cases could really help her.  He is late due to his special need.  They should write this into his IEP or something along those lines.

What do you think?

The Help Group and Music For Autism Present...

THE HELP GROUP & MUSIC FOR AUTISM PRESENT A FREE INTERACTIVE CONCERT FOR INDIVIDUALS WITH AUTISM AND THEIR FAMILIES

ON SUNDAY, JANUARY 29

The Help Group & Music for Autism present the fourth interactive concert for individuals with autism and their families. Music for Autism offers professionally performed, enriching musical experiences in an environment where individual differences are celebrated. The one-hour interactive concert is broken out into three segments to include “concert time”, “conducting time” and “percussion time” where concertgoers are invited to join the experience with their movement and provided instruments. 

The show at 1pm on Sunday, January 29, will feature Michael Zonshine & Friends.  A Southern California native and trumpeter, Zonshine has delighted audiences across the country with his artistry.  He has given performances and masterclasses for many prestigious organizations including the Boston University Tanglewood Institute, USC and the University of Hawai’i at Manoa. 

The performance is free and will take place at The Help Group Autism Center Theater, 13164 Burbank Blvd, Sherman Oaks, CA 91401.

Reservations are required and can be made three ways. Email rsvp@musicforautism.org; go to the Concert Calendar section at www.musicforautism.org; or by calling 877-863-7473 ext. 1.

ABC's 20/20 Looks at Facilitated Communication and the Wendrow Case

In the autism community, there are plenty of heated opinions, which lead to even more heated attacks against those who believe differently. Some of the fiercest attacks come from those who believe in debunked treatments like facilitated communication. No other treatment offers such fantastic results. Autistic individuals who've been unable to talk, write, communicate are suddenly able to speak eloquently with the help of a facilitator. 
For a desperate parent, it must be a dream come true--one's child communicating finally, the words flowing. All those hopes and dreams suddenly realized, parents are not likely to be skeptical of this sudden flowering of skills.

For nearly two years, I've been writing about facilitated communication and trying to convey the research and prevent parents new to the autism world from falling for it or its kissing cousin, rapid prompting method.

ABC's 20/20 just ran an entire episode on the tragic Wendrow case, which I, along with James Todd, have written about this past year. This is a must see episode. Seeing this family and listening to their story is far more compelling than dry words on a screen.

For other pieces on the Wendrow case and facilitated communication, please click these links:

Holding Educators Accountable For Evidence-Based Practices: Facilitated Communication Isn't One 


Facilitated Communication: A Price Too High To Pay 


Skepticism Of Stories To Good To Be True 


Facilitated Communication: Bandwagon Endorsements; It All Feels Good 


Why Rapid Prompting Method Still Doesn’t Pass the Evidence-Based Test 


Facilitated Communication: A Literature Review 


Navigating The Autism World: Facilitated Communication Is Still Pseudoscience 


Facilitated Communication Quackery Gets Journalistic Promotion In Annapolis