Friday, October 02, 2015

Special Needs Spotlight || Will

*Ugh...guys pardon my formatting today, I don't know whats going on here, but for some reason it's just a little crazy. Hopefully it doesn't interfere with the amazing message being shared. 


Hello, my name is Leslie and I would like to introduce you Will, sports fan extraordinaire! He is a friendly, smart and curious 12 year old who has a rare chromosomal abnormality. It is pretty rare and we don't have much information about it so we navigate on a path of the unknown most of the time. A few things we do know, he has global developmental delays and limitations on what he can do. Most of the time he does not see those limitations, which can be good, he wants to do everything all the other kids are doing. However, that can also be hard, some things are just not possible for him, making him sad and frustrated. He loves to learn new things but can get fixated on topics easily, he can be focused one minute but impulsive the next, he has an amazing memory and can recall almost everything but can't read or write. It is as if he has the mind of a 5 year old in some ways and advanced beyond his years in others. Other than having a kid who requires more attention, we are a pretty typical family. My husband and I moved with Will and our two older boys to South Burlington, VT from New Jersey 11 years ago. We have since added a little girl to the mix and it is amazing how an 8 year old girl really does mix things up in a house full of boys, especially one with special needs. Living in Vermont is great for us all but it really is great for Will, from the services, to the schools to the community we feel really lucky to be in such an awesome place.

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Miggy: Hi Leslie! Thank so much for being here and sharing your family, especially your son Will, with us today. Can you take me back to the day you knew Will was going to have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?


Leslie: We found out that Will had a chromosomal abnormality via amniocentesis. We were given little information on the diagnosis and had two kids under the age of 4 at home so naturally it was a very scary and emotional time. It was a wait and see kind of a thing and in many ways it continues to be a wait and see with Will, we still deal with a lot of unknowns but as he has grown and settled into himself more, we are not nervous and scared. While it can still be emotional, we are more comfortable with who he is as a kid and who we are as parents and that helps a lot!


Miggy: It's always really great for me to interview moms who have many years of experience under their belt as a special needs mom--certainly the longer we're on this path the more we grow and discover. I know your son's condition is 'undiagnosed' but can you explain how your Will’s needs affect your and his day-to-day life? Has this changed over time? If so, what are the major differences?

Leslie: Will's needs pretty much vary daily. Some days he is cooperative, delightful and independent and somedays his moods, frustrations & impulsiveness can be unpredictable. He has a hard time expressing himself so he acts out by yelling, acting inappropriately and sometimes he can be physical. It can be exhausting. It has changed over time, I think we get better at being his parents every day. We have developed strategies to cope and creative ways to deal with what comes up. We try not to take him places where we know he will have a hard time. We try to give him opportunities where he will have the most success. We have learned to read his signs i.e. if he starts yelling at you, quick get him some food! If he's had too much structure, quick get him his IPad! Somedays it can be just a matter of us all going to bed early and starting over the next day.



Miggy: Miggy: What are the biggest worries you face for Will?  And likewise, what are your hopes and dreams for Will?


Leslie: I am sure this is high on the list of every parent who has a special needs child: we know it is likely that he will never be able to live on his own and really care for himself so I worry about what will happen to him if something happens to my husband and I. I take comfort in the fact that he has three great siblings and a supportive extended family, but it is still a big concern. When he was younger we worried about him being accepted and finding his place within the community, but that has subsided a lot as we have seen how supportive and kind most people are.
As for my hopes and dreams for Will, I would love for him to learn how to read. I feel it would give him access to so much more in life. He loves listening to books and looking up information on his favorite sports team and players and I would love for him to be able to read about them on his own. I hope he continues to be happy, lives his life to his fullest potential and gets enjoyment in the things he does, whatever that may look like for him. I hope he is always surrounded by caring and kind people who accept and love him for who he is. I know he will always have a love for sports!!



Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situation?


Leslie: We laugh every day with Will but the thing that always makes us smile and reminds us just how special a kid he is, is when we are out and around town with him. We are amazed at just how many people know him and go out of their way to say hello and give him a high five. Often, they are people we don't even know. It makes us wonder if he has a secret life.



Miggy: There are differences you can't see and there are differences you can see and Will is sorta somewhere in the middle. As you explained most people don't realize he's different until they start to talk and interact with him. So how can people best approach or respond to your Will? Is there something you wish other people knew so as to avoid awkward or hurtful situations?


Leslie: You are right, Will is somewhere in the middle. There are certain things Will just can't handle, people expect things from him that he can't always give and sometimes the concerns we express go unheard and that inevitably makes it hard for everyone involved. Also, older kids and adults seek him out and engage him all the time. And while his peers are kind and patient with him, I wish they would include him socially. He thinks of everyone as his friend but really he doesn't have any true peer friends. That is very hard for me, he doesn't seem to notice so I try to take his lead but that is a hard thing for a mother to see.


Miggy: Of course the biggest thing most people will come to find out about Will is that he is a HUGE sports fanatic. But he also lacks the ability to ever play on an organized team like most kids his age. Can you tell us a little about his love of sports and the difficulties your family, especially Will, has faced as he hasn't been able to fulfill this dream in the way he wants? And please, tell us about Big Wille Style, the t-shirt line you created for Will and other kids like him.  


Leslie: YES if you think of Will, you think of sports. He really loves all things sports and when he talks about his favorite player or team (they change often!!) he glows. He sounds confident and interested and just plain happy. We are so lucky to have the University of Vermont in our backyard and Will gets up close and personal with many of the UVM athletes. He is know as "THE LEGEND" with some of the players. Sports are a great outlet for typical kids, it is a way to release energy, build a camaraderie and can make them feel like they belong. Will loves sports and asks everyday if he can join whatever team is in season. Unfortunately, as he has gotten older, it has become less of a possibility for him. That is extremely hard on him and on us. We have had to get very creative to help him cope with that. We have figured out that if we get him a team uniform, or equipment then he feels like part of the team. He talks players into giving him their old sweaty jerseys and they are happy to hand over whatever he wants. Just this past weekend he came home with 3 hockey sticks from a scrimmage that he went to. 
That is how our t-shirt brand BIG WILLY STYLE was born, to represent the ULTIMATE FAN. Big Willy Style has helped Will feel like he is part of something, the shirts and the story behind them represent Will and his happy go lucky attitude about sports. He loves seeing people wear his shirts with his "face" logo on them. Also it is a way we can give back to our great community as we donate a percentage of the t-shirt sales to local charities that help special needs kids. You can read more about our story and the story behind over at BIG WILLY STYLE.


Miggy: In 12 years I know you've probably learned a lot of lessons, but what is the biggest lesson you’ve learned since becoming Will's mom?


Leslie: I have three lessons: 1. Sometimes you have to create your own opportunities. My husband has been coaching our older boys in lacrosse and basketball for years and I know he really wanted to be able to coach Will but we realized that was not possible in our community so we took matters into our own hands. We started a basketball program for kids ages 4-21 who have physical, emotional and intellectual challenges. At S.T.A.R. (Special Talents Adaptive Recreation) Basketball, our special need athletes are paired up with school aged buddies in a non competitive environment where they work on various basketball skills as well as play scrimmages. We are gearing up for our 5th season this winter and it is something we look forward to all year!

2. Just let things roll, which is sometimes easier said than done. My husband is much better at this than I am, so I am very thankful we are in this together! One thing I have realized over time is that what I am concerned about or self conscious about, usually goes unnoticed by others

3.  I try not to project too much about the future. My mother, who unfortunately never got the chance to meet my kids, used to say, "You can ‘what if’ from today until tomorrow, but you may as well wait until something actually happens before you try and deal with it.”

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Thank you so much Leslie--what an incredible boy you have! And what an incredible mom you are! Your first lesson--sometimes you have to create your own opportunities--is profound, but also proof of what a lucky boy Will is. That idea is great advice for so many people in general, but thinking of it in terms of parenting our special kids we are often going to be faced with dilemma's that are unique to our family. We can't wait around for someone else to notice our needs--we need to be the change we want to see. With the creations of Big Willy Style, clearly you have stood by that idea. I also appreciate your simple and pragmatic approach to life and parenting, as you said somedays it can just be a matter of us going to bed early and starting all over tomorrow. Thanks again Leslie, you have a beautiful family.

Thanks again wonderful readers and supporters of this lil blog. You make all the difference and I appreciate it so much. As always if you or someone you know would like to participate in the special needs spotlight please email me (or have your friend/family member email me) directly at thislittlemiggy at gmail dot com.

Have a great weekend!

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