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Archive for July, 2014

TLC_MBB_Product_Shot_Bonbel

A year ago, I wrote —>>>this<<<—.  I was ultimately able to find a semi-local store that I bought out AND Laughing Cow was kind enough to send me a case.  For a while we were flush in yellow circle cheese.

A couple of months ago, we finally ran out, and I ran into the same problem.  I could not find my baby’s favorite cheese anywhere.  I finally reached out to my contact at the source.

I have some sad news to report.  Late this morning, I received this email from Bel Brands USA:

Hi Luau,

I remember speaking with you last year, and we at Bel Brands USA were all very happy to be able to help you get the cheese your daughter loves.

Unfortunately, I have bad news: a few months ago, the Bonbel flavor of our Mini Babybel cheese was discontinued (along with our Laughing Cow Blue cheese, and our Strawberries & Cream cheese.) Those three products were just not selling well enough across the country, and it had reached the point where some of the major grocery chains had told our sales reps that they would not be ordering any of those items for their shelves. Our parent company in Europe had already discontinued the Bonbel flavor more than a year ago, so at this point it is a product that is no longer made by our company in any location.

Shane, the person who had been so kind to help us last year when I was desperately trying to track down those little yellow-gold circles of yumminess, went on to suggest that perhaps we could try the Baby Bel Originals (Reds) with Brooke.  Apparently the recipes are very, very similar.  Sadly, as many of you know, sometimes, with kids like Brooke, it’s not just the flavor that makes or breaks an item.  The color it is wrapped in can change a food item from a must-have to a can’t-eat.

Perhaps if I had been more effusive in my praise of Bonbels a year ago, more people would have bought them and they would have stayed on the market.  I know I did my best to keep their “mover” status at my local stores, yet somehow I feel like I have failed my baby girl.

For now it looks like cheese may be off Brooke’s  menu, which, as a cheese lover, seriously bums me out.

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Dutch-flag

I read an article on the Interwebs this morning about the discovery of a young autistic boy who was being kept in a cage by his parents.  The article itself, though not approving of the parents’ actions, tried to address the fact that many families and school systems are simply overwhelmed by what they face on a daily basis.  This particular boy was said to be violent and the parents feared for his and their own safety.  Obviously the writer had done some research, citing this expert and that.  The writer also talked about how various institutions regularly sought expert help.

After I read the article and then reflected for a while, this thought popped into my head.

If you planned a trip to Italy, but your plane ended up in Holland, who would you seek help from?  Would you call someone in Italy?  Would you seek out fellow tourists?  Maybe call your travel agent back home? Or would you try to find a native?

For those confused by this seeming nonsequitor, there is a poem written by Emily Perl Kingsley, a parent of an autistic child, that tries to explain why the experience having an autistic child is similar to planning a trip to Italy, but discovering that your plane has landed in Holland.  If you haven’t read it, google it; it’s worth a read.

Now, I know that most people would probably either call their travel agent or maybe even the airlines, but for the sake of argument, let’s just say there are no flights to Italy and you are basically going to have to spend your entire time in Holland.  Maybe you seek out the local American Embassy (if you’re an American like me).  Perhaps you, as Kingsley’s poem suggests, go out and buy a new guidebook, maybe even learn a little bit of the language.

Here’s my thought though – tour guides and guide book and maps and phone apps will really only let you scratch the surface of what Holland truly has to offer…what it means and feels to be Dutch.

Do you get where I’m going here?

Who knows Holland better than any tour guide, guide book, or even fellow Americans who landed here before you?  You know who knows Holland?  The Dutch, that’s who.

***

There has been a lot of hand wringing about this child who was kept in a cage.  A lot of people saying how wrong it is, that no one should be kept in a cage.  I could not agree more.  But hand wringing and condemnation will not help either the boy or his family.  Many experts, both medical and social, are doing the best they can with the tools and knowledge they are equipped with, but I think that this story exemplifies the lack of resources, not just for the families, but for the dedicated people out there who work tirelessly to help safeguard our kids (those under and over 21).

I know that when you’ve met one autistic person, you have only met one autistic person…but don’t you think that the people of Amsterdam may know more about the people of Rotterdam than the average American?  I’m not saying that autistic people have or could give you all the answers on how to help families with autistic members, but I’m pretty darned sure that they might be able to see from a perspective that most of us never thought of.

Perhaps it’s time for advocacy groups, supports groups, school systems, hospitals, police departments, and the like to begin employing autistic individuals to help brainstorm what we can do to help the families scattered across this nation who are struggling daily with little or no services.  Knowing why a child or adult reacts in a certain way may guide us to the tools to help alleviate stressors or even stop what is causing a violent outburst.

Families deserve more.

Autistic individuals deserve more.

That way we can all enjoy our stay in Holland…perhaps even making our friends who got to go Italy to want to pop over for a visit.

 

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It had been a long couple of weeks.  Between the transition from the school year to summer, a long road trip and making sure I was prepared for my clients, I really hadn’t taken the time to workout.  I finally carved out an hour to go down to the basement for some high intensity Spartacus intervals.  On so many levels I needed it.

On my way upstairs to change into a pair of gym shorts and a T-shirt, Katie called to me from the living room.

“Daddy?”

“Yes?”

“Can you show me how to play some chords on my guitar?”

She had received the guitar as a present many years ago, but had never really picked it up.  Over the last year she has been playing a lot of piano on her own (she’s almost as good, if not better than I am now), but I think the performer in her would love to be able to stand on stage with a guitar in her hands.

My workout was calling to me.  All I wanted to do was go downstairs and sweat for 60 minutes.  I took another step up.

“Please?”

How could I say no.  Katie is 13….13 going on 26.  Having spent time with my father-in-law this past weekend, I am all too aware that our babies grow quickly, time compresses, and change happens in the blink of an eye.

I sighed.  I can’t honestly tell you whether I sighed because I wasn’t going to get a much needed workout in or because I had a realization that time is flying by.  Perhaps it was a combination of the two.  Regardless, I came back down the stairs and sat down with Katie.

The next hour was a mix of teaching her some basic chords (A, Am, G, D, C, F, E) followed by a jam session where she sang a bunch of songs I don’t know, while I played the ax.  It helped that all the songs had pretty easy chord progressions.  It didn’t take long to get in sync, not just rhythmically, but expressively as well.

Ultimately, connecting with my kid was a heck of a lot more satisfying that any 60 minute workout could have been…I just hope nobody saw me jamming on her pink guitar.

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shhhhhh….

Ssssshhhhh....

Shhhhh….

Can you say that with your mouth closed, please?
-Brooke (whenever she is tired of hearing what you have to say)

***

It feels like a lifetime ago.  We were new to the world of autism.  Brooke had just recently been diagnosed and both Jess and I were reeling.

We didn’t know jack shit.

We began to work with a professional, a person with advanced degrees, years in the field and promising advice.  Some of what this person advised us to do helped make life easier, easier for Brooke, for Katie, for both Jess and me.  The advice was delivered with the authority of someone “who knew”.  There was never any doubt about whether the advice was right or wrong.

Looking back, I realize that I saw what stuck, ignoring what didn’t.

A couple of years later, this professional welcomed his/her own baby into the world.  Two or three years after that, the baby would be diagnosed with autism.  The professional with all the right answers was completely lost.  The advice so authoritatively given, suddenly didn’t seem to work or make sense.

To the credit of the professional, he/she admitted as much.

***

I tell this story not to put down the professional that had worked with Brooke so many years ago.

No, the professional always had the best intentions for Brooke at heart.

And by no means am I advising any of you who are parents of autistic children to ignore the advice of the experts and professionals you may have surrounded you and your family with.

The reason I tell this story is because too often I see advice given to parents, whether via the blogosphere, Facebook, Twitter or whatever, by folks who don’t…have…kids.

Your child won’t eat A, B or C?  Just do this.

Your kid does yadda yadda yadda in public?  Obviously you aren’t doing this simple thing.

Your teen is misbehaving?  Just say this.

Your child isn’t active?  All you have to do is be a good model.

You kid is overweight? Just help him make better choices.

I’m sorry, but if you don’t have kids, you can give advice until you are blue in the face, and I really don’t care if you have a bunch of advanced degrees from a bunch of Ivy League Schools or whether you’ve got an AA from an unaccredited Bible School or whether you worked as a nanny for a number of years, you just…don’t…know.

The only exception to this, and this is important, is if you have lived through or with the particular subject you are talking about.  Case in point, autistic adults have every right to talk about what worked and what didn’t work for them as children.  Extremely Tall or short people can talk about what it was like growing up in a house that may not have made every day activities easily accessible.

***

Here’s some advice if you aren’t a parent or do not share the fundamental trait of the child  and topic in question, and you have some great pearl of wisdom for those of us struggling with our parenthood:

Go ahead and say it…just do it the way Brooke will sometimes advise me on how to tell her something – Can you say that with your mouth closed, please?

***One last thing – Jess was nice enough to post this on her blog and I received a comment from a teacher essentially saying, “hey!  what about us?” 

I felt terrible.  We have been blessed with some fantastic educators on Brooke’s team throughout the years, whose advice has been vital to not only Brooke’s progress but our family’s as well.  What I failed to convey in this post is that it is directed more toward the “sanctimony that we often encounter out there. The, “all you have to do is this, and that will stop,” followed by righteous indignation when one suggests that perhaps it’s a little bit more complicated than that.” (Jess).  If you are a childless teacher who “gets it”, please know that this was not, and will never be, directed toward you.  As a former teacher and the son and son-in-law of educators, I know how hard you work, how much you care, and how much you mean to families like mine.

 

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