April 3, 2014

World Autism Awareness Day Part Two

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , , , , , , , , , , , at 11:22 am by autismmommytherapist

Zach in a Bath 014

Today, as with every day, my heart is bursting with pride for my eldest son Justin, who has severe autism.  This week his private autism school hosted a news conference on the eve of World Autism Awareness Day, an event held by Congressman Chris Smith, co-chair of the House Autism Caucus, and Autism New Jersey.  As with any news conference there is usually a photo opp, and my son was selected to be the “face of autism” that day (the link is below.)  There are two beautiful pictures, a close-up of him apparently contemplating very deep thoughts, and a precious one of him working with his talented and adored teacher.

 

The accompanying article highlights the high rate of autism in my home state, which is 1 in 45 children in New Jersey, the highest rate in the country.  It outlines the work my friends Bobbie and Billy Gallagher did almost two decades ago to bring the rising prevalence of autism in the Garden State to Representative Smith’s attention, an act which contributed to bringing about Smith’s Autism Statistics, Surveillance, Research and Epidemiology Act of 2000 (the first comprehensive federal program centered around autism.)  I am so proud of the Gallaghers for being pioneers well before autism was a household word, and thrilled that my son’s school was given the honor of hosting the conference.

 

But as I mentioned before, my heart sings for my son.

 

Of course it’s fun that his handsome countenance was featured in the Asbury Park Press, the paper of my childhood.  I admit, it was a thrill to see him both online (and imagine this) in hard print as well.  Quite frankly a few tears were shed yesterday, from both me and my husband too.

 

But I’m writing about this today not to brag about my son getting media time (okay, maybe it’s a little bit about that.)

 

I’m writing to you today about hope, and perserverance and love, and never giving up the fight to carve out the best life possible for him, the one he was born to lead.

 

Ten years ago my son was diagnosed with severe autism.  He could barely tolerate anyone in his home, was phobic of strangers, had severe difficulties pairing with therapists, and clung desperately to his parents.

 

Two days ago he noticed the photographers, acknowledged them briefly, and went about his business of school with a smile.

 

Ten years ago my son screamed and sobbed whenever anyone tried to work with him, no matter how desirable the reinforcers being offered to him.

 

Two days ago he worked diligently (and most importantly,  joyfully) with his teacher for his coveted bagel chips, but mostly for the love of  learning.

 

Ten years ago we watched as his first birthday came and went, and so did the few vowels and consonants we held so dear.

 

Two days ago he used an iPad to communicate his wants, and is even beginning to fashion words for us, including two-word sentences which seem like miracles.

 

Ten years ago I thought I’d never see him smile.

 

Today, and every day for the past few years, I am witness to the unearthing of his ebullient soul.

 

Yesterday I cleaned out our local 7-11 of every Asbury Park Press they had (we have a lot of relatives,) and I am certain the photo of my son’s slight smile will make it into his scrapbook.  There were phone calls to grandparents, emails to friends, and of course the obligatory status update on Facebook.

 

As I mentioned before, I’m a proud momma of an autistic child.

 

But the beautiful part of all this is sometimes I need a not-so-gentle reminder to celebrate how far we’ve come, how our family was forged in fire, and now revels predominantly in peace.  My son is happy.  He loves his life.

 

My son with severe autism loves his life.

 

And nothing in the world could make me more proud.

http://www.app.com/article/20140401/NJNEWS15/304010044/Autism-advocates-urge-more-funding?nclick_che…

 

 

 

 

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October 3, 2011

Combating Autism Reauthorization Act (CARA)

Posted in My Take on Autism tagged , , , , , , , , at 10:54 am by autismmommytherapist

This past week, several momentous events occurred in the lives of the McCafferty clan. One came in the form of a wedding ceremony between my aunt and her fiancé, which I will write about soon, and probably deserves its own entire blog (not just an entry) for the richness of the story that accompanies it. The second event, which I admit will affect slightly more people, was the passing of CARA (the Combating Autism Reauthorization Act), this past September 30th.

Let’s just say champagne toasts ensued for both.

For those of you not familiar with the law, I’ll tell you that CARA was first passed by Congress back in December of 2006, under the tenure of George W. Bush. This law authorized almost a billion dollars of funding to invest in autism treatments, research, and diagnosis, and you can read more about it if you so choose at: http://www.autismvotes.org/site/c.frKNI3PCImE/b.6376831/k.ACFC/CARA.htm

I can actually remember learning of its passing in the news (and the fact that I’ve retained this information from five years ago is nothing short of remarkable). I recall thinking that finally, finally, our community was being given what amounts to a formidable amount of money, with the accompanying hope of alleviating some of the most difficult aspects of this disorder.

And believe me, we have needed every penny.

A number of other bloggers have already written beautifully about this subject, most notably Jess at DiaryofaMom. Since I have no desire to attempt to reinvent the wheel, I won’t discuss today what the elongation of this law means to me. Let’s just suffice it to say after living there for fifteen years, I consider Washington to be my second home, and I am really, truly proud that Congress collectively stood up and reauthorized an act that will bring solace to thousands of families in this country.

I am certain our Senators and Congressmen will sleep more soundly now.

Today, I will not be penning a soliloquy here on all the myriad ways this law will bring relief, from the scientists creating drugs that will hopefully mitigate some of the more daunting aspects of autism, to the pediatricians seeking to diagnose our children earlier, or even just to parents simply trying to make it through an exceptionally trying day. I would like however to personally thank two specific Congressman, Senator Robert Menendez, and Representative Chris Smith, both from my home state of New Jersey, for the collective roles they have played in both its creation and implementation.

Senator Menendez was instrumental in getting the bill passed into law half a decade ago, and followed through later by lobbying successfully to implement New Jersey’s healthcare reform bill, which enabled thousands of residents of the Garden State to petition their insurance companies for coverage of previously denied therapies. As I’ve written before, although this coverage did not extend to us because my husband’s insurance originates in a different state through his employer (yes, I’m still a little bitter), I was, and remain, thrilled for the families whose often overwhelming bills have been significantly reduced. I actually know a number of those who have directly benefited from its passing.

It’s a beautiful thing to see a mom able to focus on potty training rather than worrying about how to put food on the table.

I’d also like to praise Representative Smith, who himself introduced the CARA bill to the House of Representatives, and whose initial advocacy for autism spans over three entire decades.  Congressman Smith has more than willingly lent an ear to the needs of this particular community, and has relentlessly sought relief for us through written legal means. He first listened to the pleas of two of our area’s fiercest autism advocates, Billy and Bobbie Gallager, over fifteen years ago, which resulted in his personally spearheading many of the bills which continue to aid the residents of a state where autism affects one in sixty boys. He continues to remain a vital force for legislative reform.

And yes, I said one in sixty.

Finally, I’d just like to extend my deep appreciation, to both Senator Menendez, and to Representative Smith. Through your dedication to our cause, and your relentless advocacy, you have brought both aid and relief to many families in my native state.  For your collective time and effort, I am extremely grateful. I’d also like to mention I make a mean jambalaya (it remains my only “mean” dish), and should either of you have a hankering for the taste of the low country, please let me know. I even have Tupperware for left-overs.

In the off-chance that this hankering does not occur, know that I simply, and humbly, thank you both.