My Little Man; Joe Riguzzi

As we are nearing the end of Down Syndrome Awareness Month, I feel compelled to write about my guy. Lord knows, he is my favorite subject. It was hard to think of anything that I have not written about. I have blogged about the discovery of him having DS, his birth, Joe’s run-in with cancer, Special Olympics, fights that I have had in his name, etc. The only thing that I can think of that I have not talked about is the day-to-day. What’s it like to live with my little man?

So let me tell you …

Every morning he wakes up to his own alarm. He makes his bed, gets dressed, brushes his teeth and comes down the stairs. The first question he cheerfully asks us is how we slept. My handsome son gets his lunch together, brings his backpack up the stairs with his shoes and eats his breakfast waiting to go to school. Ready and at the door five minutes early, as his Dad would be. He is joyous as he runs to get on his bus each morning – looking forward to the day. He calls me each afternoon as he is on his way home and when you ask how his day is, it is always good and he had fun. My little man is the perfect 18-year-old!

When he gets home, he throws on his headphones and sits at his laptop usually watching General Hospital or music videos. Although never diagnosed, he has many autistic tendencies and we embrace them. It doesn’t matter if sometimes we have to touch him somewhere to get his sensory issues under control. I can usually just tell him to ‘stop flapping his wings’ and that works. He loves to wave a napkin and pencil in his left hand because it keeps him grounded. Joe has been waving something since he was able to hold an object. He knows he can only do that at home and is in control over it. So be it – we let him wave his flag at home. After all, don’t we all have some sort of sensory issues?

I do believe music is his gift!

One of the ways we embrace the autism inside Joe is his tendency to watch music videos and shows over and over again. This has not only taught him speech and language, but it has also strengthened his memory. Joe’s first words were “Sha La La.” He would make me play Van Morrison’s, Brown Eyed Girl, over and over in the car and would sing that part. It was his first concert at Jones Beach Theater at the age of five, and that love of classic rock has been fostered ever since.

My little man can tell you who sang what Beatles song, on which album and what number song it was on that album. It isn’t just the Beatles, but it is also Van Morrison, Creedence, and some others. I am sitting looking at him while I am typing this and asked what he is watching and his response, The Last Waltz with Creedence Clearwater Revival. A movie I went to see several times as a teenager. When we brought him to see John Fogerty, he knew what song he was playing after a few notes. Matter of fact, he could guess many songs beforehand based on what Fogerty was saying as he introduced the song.

He loves to perform and doesn’t have a shy bone in his body. A little bit of encouragement and he will surprise any of us. Watch his performance here and how he comes more alive with a little bit of encouragement.

He has great knowledge of what is truly funny from watching Tom and Jerry and The Three Stooges from a very young age. His favorite TV show is Friends. Probably not always an appropriate program, but he learned a lot about making a joke from watching it … maybe even a few pick up lines. I would even be willing to bet he could beat most people in a Friend’s trivia game. If you ask him his favorite character on Friends, it will be Joey Tribbiani – How you doin?

Right now …

Joe goes to WCC, which is a transitional program for 18-21-year-old students with different abilities. He takes Spanish, Personal Finance, vocal exploration, living skills (which includes cooking in the cafeteria), fitness, acting, health and living, study skills, and computer skills where they are working on keyboarding and building a website. The best part is he has an internship with WARY, the college radio station.

Well, this past Wednesday, we got to hear him DJ on the radio!! Part of his job is he gets to pick some songs and introduce them on the radio. While the other DJ’s are playing Post Malone, my guy is sticking to his roots and chose Van Morrison songs. He doesn’t care what everyone else is doing, he is always himself. He even had some banter about Halloween with the other DJs in the studio. That did my heart good because if you asked what he wants to be when he grows up, he will tell you a DJ. If you are local, you can tune in to 88.1 on the FM dial every Wednesday from 9:30 to 11:30 to catch him.

When his dad or I get home from work or anyone walks in the door, my little man immediately asks how their day was. He is the first one to tell me how beautiful I look before I go out at night.

Life Lessons My Little Man Taught Me

I am a better human being because of him. I learned more about compassion and empathy because he is in my world. Just by being on this earth, Joe makes it a better place. His love is endless – just like God’s. I have heard people say that people with DS and any different needs are closer to God and I believe that. To know him is to love him. I bet anyone who has met Joe and hugs him will say they are a better person because he is their friend. God gave us kids with DS or any special needs to keep the rest of us humble and to teach what is really important.

He’s still trying to teach me manners (with his particular brand of patience and humor) but more than that — Joe loves unconditionally. He has an innate understanding that love heals, if we only pause long enough to make room for it. Often in the form of a hug, sometimes a dance, a pat on the back, or remembering to ask you about that person you love who might need an extra prayer, Joseph Riguzzi has spent 18 years caring for the people around him and showing us kindness. I am certainly better for being his sister.

Roberta

Joe hit all the milestones, albeit a lot later than 99% of your typical children, but he did it! What do you learn from that? Patience, for one thing, but even more importantly you learn to appreciate those moments so much more. You revel in the glory of their first steps and first words a lot longer because you know how difficult the road was to get there after an ENORMOUS amount of therapy.

Joe accepts himself for who he is, always proud of himself, and genuinely very happy. It doesn’t take a lot to put a smile on his face – a piece of pizza will do the trick! Can most of us say that? I can’t.

He can break out into a dance at any time. He isn’t shy and doesn’t care what anyone else thinks. My little man isn’t embarrassed – just happy to be himself. A young man with Down Syndrome.

Yes, I watched this video 100 times, as well as the rest of my collection of ‘dancing Joe’ wearing a big smile and bursting with love every time.

Don’t ever say to me that God gives us what we can handle. He didn’t give me this gift to handle. God gave me this gift because he loves me and had faith in me to be his mom. Joe has a purpose, like the rest of us, and he has been giving me purpose every day for 18+ years.

I wouldn’t change moments like the one below for anything in the world …

If anyone knows of any DJ classes, I would love to hear about them. I have posted more daily inspirations on Down Syndrome this past couple of weeks on my facebook page. Please feel free to follow and like my page.

Happy Sunday my friends and much love,

Sandy

#enlighten #empower #inspire #educate #BeKind #downsyndrome