(Editor’s Note: Today is World Autism Awareness Day. In honor of the day and the many among us whose families include  children with autism and other special needs, I asked for a post from someone in my own family, who’s already shown great leadership in helping families of children with autism.  I hope more of you will comment below, and let us know about your families too. – CML)

by Phyllis Fanzo Lombardi

My sister-in-law, who edits this Web site, is so funny. She said: write what the last 11 years has meant to you and do it in a few paragraphs. Yeah right, not a problem. Actually, it’s not really so tough. Around my house, here really isn’t much else than autism to talk about.

Autism is the core of our years. The good, the bad and the ugly: it’s always at the core. Joey was born eleven years ago; then, 22 months later. our life changed in such a way… I don’t think even the most eloquent writer can put it into words.

I remember the day the developmental specialist told me: “Your son has autism.” I thought: Okay, breathe, we’ll get through it, you’ll do what you need and he’ll be fine. And that is how I went though our first years. Thinking it was temporary. I’ll get the best doctors, therapists, school, medication and we’ll be through it. But you don’t get past it.

At least most of us don’t. We improve. And I don’t say that lightly. It’s a BIG deal to improve. But you don’t get past it. At least with Joey you don’t.

Joey has severe-to-moderate autism. He is non-verbal, and has major challenges in all communication. For example, he had to learn a smile meant happiness. We worked for six months on that: I used to tickle him in the dark and then put the flash light on my face so he could see me smile. Why in the dark? So nothing else would distract him. A paper clip on the floor would pull him away.

He’s mastered that now and smiles all the time now, sometimes even for real.

The most amazing part of the 11 years is not always Joey’s improvement and my husband’s unselfishness, but the role in all this of my older son — who’s of the type we call “typical” (meaning not autistic), but he is no typical kid. He is the most wonderful brother and son. He loves his brother so, and hurts so much for his loss of words and “normalcy”. He has become frustrated by others misunderstanding of Joey. And wants to fix the world. He has told me he wants to be a special needs lawyer.

Three years ago, when he was only 11, Nicholas created a button for his brother. A voice he said. The button states “I’m not misbehaving, I have autism, please be understanding.”  He wanted to make sure folks realized Joey wasn’t misbehaving, he just had autism.

He said “Mom, he’s a good kid. He doesn’t deserve to be misunderstood.”  He sells these buttons for $3 each, and donates a dollar of each sale to Autism Speaks. He has donated over $25,000 to date and he doesn’t plan on stopping any time soon. Not until he makes this world a little bit more tolerable for Joey and kids like him. (At right, he’s speaking about autism at an event at Montefiore Medical Center.)

We are a family, not your average family. There are none of the usual dynamics. No fighting or competition. It’s all support and exhaustion. Our love is very deep, very honest and often painful. But it is real. We hold on to each other and are thankful for the simple things. Joey has taught us never to take anything for granted, not even a word.

Eleven years later, we are very different. We are older.  I look about 105. I often say having a kid with a disability ages you in dog years: seven years for every one. I worry about what will happen when I die, and I worry: will Nick have to do more for Joey then he wants to someday?

We are also smarter and luckier now than 11 years ago. Smart how? I have learned that you don’t have to hear someone’s words to hear what he is saying. I think that would be a good skill for more of us to acquire. How are we lucky? We have learned what’s important. I know many folks who never learn that, you can tell. Yes, I still like my nice clothes and wear lipstick, but it’s fun, not important. Joey is important and Nicholas is important. How we face challenges and teach our children how to face them is important.

And one of the most important things we have learned over the last 11 years: Nick and Joey are of equal importance. That’s a big one. I think it’s something that most don’t know. We are all worth the same.

I wonder what the next 11 years will teach us? I hope it’s how to count our lotto winnings. Then again, in many ways, we have already won.

Phyllis Fanzo Lombardi is well known in the Ardsley School District, Westchester County and the nation for her tireless advocacy on behalf of the families touched by autism. She has trained EMS workers, designers of schools and hospitals,  and educators about the needs of low-verbal children with disabilities. When her son is admitted to the bar, she may just run for President.

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  • Gayle Cratty April 3, 2009 at 1:40 pm

    Dear Phyllis,

    I have always thought of you and your family as very special and have known some of the struggles you have experienced but kudos to you for the gracious way in which all of you deal with life! No doubt we have so much to learn from your experience. Thank you for sharing such profound and thoughtful inner feelings with all of us. I am proud to know you! Your family is blessed to have a mother and wife like you.

    Blessings to you all!
    Love, Gayle

    Reply
  • Cynthia Lanza April 3, 2009 at 12:09 pm

    Phyllis, Thank you for sharing your thoughts, feelings and wishes. You made me laugh, cry and just sit and wonder about all the things we take for granted in life. You and your family have been such a wonderful example and inspiration for all families and children with disabilities. You never fail to amaze me how you manage to do ALL the things you do from day to day. You seem to do everything with ease, delite, conviction and ALWAYS with a smile. I have never told you this, but at times I feel you are the Wind Beneath My Wings. Here is something I would like to share with you: One of Dom’s pediatricians from years past had told when he was diagnosed Microcephalic, and possibly severely MR that, “everything I do for my child will be a fight; and that the things I will do from my child I considered ordinary, but in fact it will be extrodinary”. I guess it is safe to say we live by those words and it is this way of thinking that we show our love and commitment to our family.

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  • Cynthia Lanza April 3, 2009 at 11:48 am

    OMG PHYLLIS YOU WROTE SUCH A LOVELY PIECE. AS ALWAYS I ENJOY YOUR

    Reply
  • Annette Contento April 3, 2009 at 7:27 am

    Phyllis,
    This article is a wonderful way to get your message across relating to autism and the family. It is indeed a family affair and the Lombardi’s have the dedication and strength move forward. I have always respected and adored you, and this article shows you in the manner that I know and love so much.

    Reply
  • conni montalbano April 2, 2009 at 10:47 pm

    Phyllis is a wonderful mother and the most unselfish woman I know. She has taught all of us about autism.

    Reply
  • Sheila April 2, 2009 at 10:14 pm

    The Lombardi family has touched so many people’s lives in so many positive ways. The entire family are advocates – not just for Joey, but for all people like him. I am blessed to have gotten to know Phyllis, and her family through our interaction.

    Reply
  • Diana Gager April 2, 2009 at 10:01 pm

    I am always touched and inspired by Phyllis. She is as incredible in person as she comes across in this article.

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  • Vickie Lombardi Grandmother to Nick and Joe April 2, 2009 at 9:25 pm

    COMING FROM MY GENERATION AUTISM WAS A STRANGE WORD…WE HAD NO UNDERSTANDING OF IT…THRU MY SON, DAUGHTER IN LAW , AND GRANDSONS NICK AND JOEY I HAVE LEARNED A LOT..
    I HAVE SEEN THE UNSELFISH DEEDS OF MANY PEOPLE TRYING TO MAKE A DIFFERENCE IN THE LIVES OF THE CHILDREN..
    PHYL ..YOU, NICK AND NICHOLAS HAVE MADE A VERY IMPORTANT CONTRIBUTION NOT ONLY FOR JOEY BUT FOR THE MANY FAMILIES THAT ARE AFFECTED BY AUTISM…DAD AND I ARE VERY PROUD OF YOU.

    Reply
  • Kimberly Douthett April 2, 2009 at 8:53 pm

    Phyllis, Nick, Nicholas and Joey, we love you all so much. Mom says it’s the best part of the day when she talks to you Phyllis, and I can aways tell when she is on the phone with you…she never stops laughing!! You make everyone smile, and you share that “glow” with everyone that you know! Especially with Joey and Nicholas…keep smiling!!!

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  • Susan Douthett April 2, 2009 at 8:39 pm

    Phyllis, I am so proud to call you my friend. You have made the last 12 years of my life so happy because you came into it at a time when I really needed someone to brighten my day. And you have brightened many days, for me and others with your smile, your laugh, your warm and welcoming ways, and it has been a pleasure knowing you and your family, your wonderful husband and two of the most precious boys I know. You face so much in any given day with an attitude so loving, that it leaves me wondering what God did with the mold after he made you! And through your strength and encouragement, your boys have developed into such wonderful little men, and for that you should be extremely proud!

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  • Natalie Werner April 2, 2009 at 5:29 pm

    Phyllis has beome my friend as a result of my son Lucas’ disabilities (he has global developmental delays and mild Cerebral Palsy). We live in Ardsley too. Lucas has had some of the same teachers that Joey had at our elementary school. Lucas is almost 7 and has been getting the most incredible education in all over learning since he was 17 months old. He now walks, talks and is reading, writing and learning addition and subtraction. This is because we have been so incredibly lucky to have had amazing doctors, therapists and teachers that work with him to maximize his abilities. He works harder than anyone I know to get everything done in a day that most of us take for granted. He sleeps great at night because he’s so exhausted from his day, every day.
    Phyllis has given me great advice, has introduced me to some pretty incredible people that know everything there is to know about having a child with disabilities and has given me friendship, which is the best thing in the world when you don’t know how your day will go on any given day. She has the best sense of humor and looks at everything with a “no big deal, we can take care of that” view, which is not easy for everyone to do, but if they could it would make so many days so much better for tons of people. You can learn a lot by spending time with Phyllis and her family.
    Joey and Lucas entertained us at our town pool last summer by following each other in and out of the water. Just seeing what they were doing was great to watch because they didn’t have to say anything, just look at each other and enjoy the company they had together. That’s all any of us really need.

    Reply
  • Carol Solanto April 2, 2009 at 5:16 pm

    Great article by Phyllis Lombard. It is honest, sensitive and emotionally charged. It certainly makes you stop and reflect on what really is important in life. Thank you, Phyllis.

    Reply