29. May 2013 · Comments Off on 5 Things You Should NEVER Say to a Dad of a Child with a Disability · Categories: advocacy, lists, parent education

A strong shoutout to Mochadad Frederick J. Goodall for the article that inspired this response. If your child experiences a disability, just add my five to Frederick’s five. (There are a LOT more I assure you…)

When I am out with my son, we get all sorts of comments.  Just like Dads of typically developing children.  However, Dads of Disability get the extra sauce in this area of life as well.  Here are some of the things I get asked or told.

(Ed. note, 31-May:  I’ve received feedback that the tone of this post is “snarky.”  I agree that the tone of this “list style” social media post could be construed this way, esp. by those who haven’t repeatedly experienced these kinds of comments from strangers.  Perhaps I could have included more straight “advice” in this piece.  Many other pieces I write, and my book, will not take this tone so much. Thx – Gary)

1. What’s his diagnosis?

Well, let’s see.  You are a complete stranger and you are asking about the medical, developmental, and behavioral details of my son’s life.  IN FRONT OF HIM?!  Let’s see.  How about none of your business?  I know you are just curious.  I am curious about why that lady over there is wearing really inappropriate clothes too, but I am not going to ASK her.

2. I know a kid like him

Really.  You know a kid “like” my son.  Through a single glance, you know the hopes, dreams, challenges, ups and downs of this very complex and unique individual known as Alexander.  And you know enough from that single glance to let me know that you know a kid “like him.”  And even if you did, so what?  You want a medal?

My favorite response to this question is “Like him?  You mean you know another boy?”

3. That’s OK, I understand

When my son attempts or actually makes inappropriate contact, you’ll say “That’s OK, I understand.”  Look, I know you are being nice.  And patient.  And I sincerely thank you for that.  However, it is *not* “OK.”  You should probably say, in as patient and understanding way, “You can say hello or shake hands, but I’m sure you know not to touch strangers.”  (I know, it’s a lot to ask you to learn.  But I have seen people react that way, so I know it is possible!) My son is a cute early teen now, but if you wouldn’t react that way when he is a 6′ late teen, you probably shouldn’t react that way now.

4. I wish I could be in that cart (wheelchair-like vehicle)

My son uses a Kid Cart when we go on longer walks or when he is really tired.  I can’t count the number of times that people of all ages, genders, and walks of life have said to me or my son “I wish I could be sitting there!”

Really?  You wish you needed an adaptive device to have mobility?

5. My grandson has autism too

First of all, how do you know my son has autism?  And even if he did, why do I need to know your grandson had autism too?  Look, I understand you are trying to make a connection with us.  Maybe even a special one.  If you do have “special” sensitivities to what you think you may be encountering with my son, just be authentic.  Say hello to him.  Ask him if he is enjoying the day.  Jeez, maybe approach him like you would approach ANYONE ELSE.

I’ve been tempted to respond “My Grandmother had gray hair too” or “My friend is black too” or “My mom has age spots too” but I haven’t done that.  It would be rude, wouldn’t it?

What ones have you heard, Dads?

Gary

 

 

 

28. May 2013 · Comments Off on Dads of Disability: Storyboard, contributor, awareness progress! · Categories: animation, author queries, kickstarter

Hi,

I am thrilled to report that Casey, the talented soon-to-be-high-school-graduate who is animating the kickstarter video for Dads of Disability, has sent me her storyboard!  And it is great!  It really captures the story I was trying to tell possible backers/readers and is very fun and moving.  Here’s a panel from the storyboard (this is NOT the final art – just a panel from the storyboard)

Storyboard

Also, some of my new (and established) friends in the genetics community have been telling their peers and clients about my project.  Thanks to you, and new visitors sent my way because of them.

Finally, I have been contacting — through email, phone, and social media — some potential father authors.  I am absolutely floored by the level of response to the project.  Not only do these Dads want to share their stories, they want to read the stories of the other dads.  RIGHT NOW!  Even though the book is just underway.

Signs of good things to come!

Be sure to have a look at the About / FAQ / and Submit a Story menus on this page.  And share with the social media buttons or email this site to Fathers who may want to contribute!

Thanks,

Gary

23. May 2013 · Comments Off on On the slide at age 13 · Categories: Gary's Son

Hi,

In the past few weeks, my son has been able to use the playground slide (with a ‘spot’) for the first time. He is 13 1/2 years old.  Also, his residential school placement through their outdoor and gym program has been able to get him harnessed up and starting to use the climbing wall.  That is extremely impressive and I am so proud of him and for him.  And thankful to the school staff!

For parents of typically developing kids, let me just clarify.  This is a big freakin’ deal!

Best to all,

Gary

Hi,

Here are a few things of the dozens of things that I learned from my last post about “Defending Finn’s Dad” and the comments that followed on Jeff Howe’s Facebook page and elsewhere. By no means am I done thinking about these things.

1. Make sure that your readers understand to whom your point is aimed. If the piece contains autism topics, but you are trying to make an observation about all disabilities in general using autism as an example, make that abundantly clear.

2. For every person who demands the purported power of people first language (“I am writing an article about people with disabilities”) there are those that find it powerless or even offensive compared to the alternative (“I am writing an article about disabled people.”)  It’s even more complex when you use “people with autism” versus “autistic people.”

3. I finally understand why I dislike “Welcome to Holland” so much. And why I have to be more understanding and empathetic to those who like it.

“Welcome to Holland” is a short piece that attempts to describe the feelings a parent may have when they learn they have a child with a disability. It uses a metaphor of prepping for a trip to Italy and all the hopes and dreams that entails, but ending up landing in Holland without even an announcement.  I’ve always found that metaphor to be weak and frankly, a slight bit insulting.  It wasn’t until I read the detailed criticism’s of Jeff’s piece and his use of an “Extra Terrestrial (ET)” metaphor and some people’s visceral response to it that I realized that *I* need to be less judgmental about others in my extended community and their perceptions.  And others do as well!  It doesn’t have to be such a short jump from a poorly chosen metaphor to Nazi imagery.  And people (and me!) need to be less quick to impugn the character of others.  I’ll probably write an essay for my upcoming book about how I had a very inappropriate visceral reaction to a video game’s theme about 13 years ago after my son was diagnosed.

4. I learned much much more, but wanted to keep this post short!

Thanks for reading, and be sure to let me know if you want to contribute a story or essay to my upcoming book, Dads of Disability:  Stories for, by, and about Fathers of Children with Disabilities.

 

Thanks,

Gary

 

Hi,

The May 2013 issue of Money magazine has an article by Jeff Howe (twitter @crowdsourcing, his writings are easily googleable) titled Paying for Finn.  The article gives a stark picture of the financial issues an upper middle class family faces to effectively care for their son who experiences autism. Whether you think you’ll like the article or not, I encourage you to read the whole thing before reading this rest of this entry.

Negative Response?
My response exists because I was utterly shocked at the level of anger aimed at the author in some social media and blogs.  I don’t want to quote too many of the angry notes, but here is a short selection.

  • “The way this is written  makes it sound like Finn’s disability is an inconvenience to his family.” From the Ollibean.com blog (Ed. 20-May-2013 article seems to have been retracted)
  • “When people speak this way about their children, and in a public forum, it makes me wonder why social services, child protective services or whatever agency is responsibly for child safety, are not monitoring these families to ensure the children are safe from being murdered by their parents.” From a Facebook comment on the Ollibean.com blog
  • “I am quite disgusted with the fact that this man has such anger and resentment towards his son. … Grow up and stop whining.” From a Facebook comment on the Ollibean.com blog
  • “The parent in the article is clearly disgusted by his son and does not even consider his child human!” From a Facebook comment on Karla’s ASD Facebook page (April 23, 2013 post)

I think I understand some critics’ perpectives, though I don’t agree
If I can summarize some of the responses I read, the critics are essentially saying that this father is seriously stressed out, blaming his son for the travails of his family life, and a seriously spoiled upper-middle-income man. I think some more savvy commenters are saying that perhaps Money/CNN editors were editing the piece to be a bit sensational.  (I’ll grant them partial credit on that one.)  Some commenters saw Jeff as wanting to “fix” his son. And while I am sure that some commenters did, it is clear to me that many didn’t read the whole article.  And I think that many critics missed the bigger thesis or at least the larger opportunity this article presented to the general (non-parents of kids with disabilities) population.

With that said, here’s my defense of Finn’s dad, Jeff Howe.

This was a Money magazine article – so the article was about money
This article was not in Physical Therapist Monthly or Autism Daily or a psychology or sociology journal or even in a general newspaper.  It is a magazine about money and a magazine for the most part targeted at middle to upper class people!  So, Jeff’s article was about money.

I understand that there could be jealousy at play. Jeff does do well compared to most Americans.  But regardless of income, if you look at the multiplier needed to raise a child with intense special needs without any outside assistance, even someone with a $100K+ salary could go bankrupt very fast. In my personal case, in the first few years of my son’s life, I spent over $30K per year above and beyond any school or external assistance to keep him safe and included and on the path to thriving.  (Those personal funds are long gone.)

And now, since my son is in a specialized school, should those local, state, and federal supports for that school disappear, his annual school and services bill would be over 3 times my last full-time pre-tax salary.  Not what would be left over after I paid other family expenses, but rather at least 3x my entire pre-tax income!

Maybe Jeff didn’t say it well, but one thing that the general public (not parents of children with disabilities) need to know is that “personal responsibility” is great – but when your child’s minimal needs are 1.5x to 10x or more than your complete family pre-tax income, there is a problem.  And this multiplier is in play whether you make $25K per year or $100k or more!

Jeff loves his child, did you read the whole article?
Here are few things Jeff said in the article.  I am not sure how anyone read the entire article came away thinking he thought his kid was a monster. (Again, I acknowledge some concerns about word choice, but not the thesis that Jeff is evil.)

  • “Despite it all–the broken glass, the tantrums, the bitemarks, the feces Pollacked across his bedroom wall–I quite love my sweet, strange boy.”

I am sorry, but that is a beautiful sentence.  It tells a general population the true horrors of a tantrum and that there is intense love there despite them.  I hear the criticism – that autism (and additional challenges many of us know well) aren’t all about tantrums.  But this is Jeff’s authentic experience to date of his son.  And there is intense love there despite it!  Let’s give Jeff props for his point in his family’s journey.

  • “There were other concerns. His eyes were deeply crossed and his legs hung funny. He lacked muscle tone.  The issues were ‘global. ‘ Later that afternoon we went to our local coffee shop to talk.  Alysia [his wife] cried.  I didn’t.”

I promised myself I wouldn’t talk about gender for this article, but that one needs to be addressed.  Not about money between moms and dads.  Not about how day to day issues are split.  That sentence sums it up and hones in on my empathy for Jeff.  It is hard for a dad to cry and mourn when you are learning about your child’s challenges.  You don’t feel like you should.  So you don’t.  Especially in public. Except for when you do.  This theme, this simple sentence is something I want to explore with other dads as one the the themes of my upcoming book. (Caveat:  I fully realize that some moms don’t cry and some dads are like waterfountains.)

  • “We’ve reached the point where our house, basically, is Finn’s trust fund, meaning we’ll be able to apply the proceeds from the sale of that to his care. That, of course, assumes that we won’t still need a big house to take care of him as an adult and that we can make enough money by downscaling to make a dent.”

Some of the critics callously say that if Jeff thinks Finn is too hard to take care of, he should give him up.  One even said we need to check up on people like Jeff to make sure they don’t murder their children!  What I see is a dad struggling to make the best decisions he can. These decisions include  the one biggie we all, as parents of kids with severe disabilities, make.  How much of a sacrifice must and will we make to our own old age, our own marriages, our own lives in order to ensure our children are comfortable for their whole lives.

He’s trying to show people (people who are NOT us in the community of parents of kids with disabilities) a bit of our reality.  If he, and the editors, had to use a bit of politically incorrect language or dire language to paint that picture, please forgive them as their goal was laudable. Jeff has as much love for his child as any of us do.

Jeff’s “Alien” metaphor in the introductory paragraphs
Some of the criticism, and I suspect readership dropoff, occurred in the first three paragraphs.  Jeff used a metaphor of his son as an ET on a baffling planet.  It didn’t really bother me, because I knew what he meant and what his intentions are.  Perhaps you’ve read the piece Welcome to Holland? Well, I personally find that its simplified metaphor of traveling on vacation to the wrong place by accident minimizing to my family’s experiences.  However some people find that the Holland piece really useful.  And if it is useful to some families, then I am all for it! So I find it hard to understand why are some criticizing Jeff for using a different, but equally valid metaphor.

Jeff wants to effectively help his son.  The third paragraph in his article closes with him saying “The best we can do is help our alien child negotiate the baffling planet on which he’s found himself.” I can see how someone could be offended by this, but I’m not. I think it is kind of good writing to try and convey these feelings to the uninitiated.

Criticism of ROI (return on investment) on your children
Some critics honed in on the ROI word and paragraph. This is what Jeff said:

“Now we’re plagued by perpetual guilt that we could — should — do more for our son. But like a lot of families with a disabled child — even families like ours, with some means — we’re faced with a Sophie’s Choice: If we empty the bank for therapy for our disabled child, it necessarily means not spending as much on his ‘neurotypical’ older sister. It’s an awful thing to contemplate: No parents should be forced to compute the ROI on their kid.”

Some commenters said there was no financial impact at all on their families (God bless them!) Others said that Jeff was boiling his child down to a monetary value. Others even criticized Jeff’s spending on therapy as him trying to “fix” his son.  (I think that last opinion is an outlier even in the parents of kids with disabilities community.)

Jeff is saying that no parent should have to contemplate funds for one child versus another.  He talks about it as a Sophie’s Choice.  Bottom line is that all families make decisions like this whether consciously or organically by just “letting them happen.”  I find it difficult to see how people have turned this into Jeff saying that a child has an ROI.  In fact, it is just the opposite – it is a Sophie’s Choice.

Getting the word out to general public, or talking to ourselves?
Ultimately, I think the criticism comes into play because many commenters on this article are steeped in the life and language and experience of parenting a child with disabilities.  That culture is great (I live it!  I get it! My peer parents are my heros and inspiration!) However, I think this article was written to a general population.

I think that it is important in any advocacy and education piece to meet the target audience where they live.  At the end of the day, I think it is important to get the word out about our challenges to the general population.  We would be better off to focus on the implications of Jeff’s thesis: “Look how hard it is for Jeff’s family financially, and they make really good money! Imagine what a single mom or dad that made $30K a year or is unemployed would have to do!”

Bottom line for me
Remember that the Money article was not written in or for a support group or a disabilities focused publication. Yes, some word choice or sentences probably could have been recast.  Yes, other parents, perhaps older ones with more experience or parents with fewer financial means or parents with a different cultural background would have approached the article differently.  Perhaps you’ll write one!  I would love to hear other detailed, authentic experiences about the money issue.

Submitted with warmth, respect, and admiration,

Gary

EDIT 15-May 1:40pmEST: For those of you visiting (thanks for stopping by!) there is a great public discussion going on about this topic on Jeff Howe’s Facebook page.  Use this link to get there.

 

 

Hello friends,

Welcome to the Dads of Disability blog.  This blog is here to document the journey I am continuing on writing a book about fathers children that experience disabilities.  The other day at the 2013 New Hampshire Family Support conference, I shared a vision of this book project with some other fathers like this:

If we provide a new or even an experienced father of a child with a disability a book that could help them cope even a little bit better; manage issues knowing that others have come before; or see that they are not alone in having feelings and experiences that not only did they never expect to have, but that they may be ashamed of; well, then we would have a great tool for those dads. Would you share stories like this with me so I can share them with other Dads in a book?

Does this simple vision make sense to you?  How could I adjust it?  Remember, although I have been working on this project on a slow burn for a while, it is moving into gear.  If you have opinions, just let me know!  Read through some of the other pages in the top menu in this blog and visit often.  And don’t forget that the main web page is located at www.dadsofdisability.com  The address of this blog is blog.dadsofdisability.com

You can always email me at gdietz@garydietz.com or fill out this form to be notified when the Kickstarter project begins, to let me know you are interested in buying when available, or to share a story!

Thanks for your support,

Gary