Author Archives: CrystalMedeiros

About CrystalMedeiros

Mother to my gorgeous 10 year old son with ASD, first. Development Coordinator for CAR, 2nd. ;-)

“Kid’s with Autism don’t make friends or have meaningful relationships with family & friends. Trust me!”

Does the title of this blog infuriate you and/or make you upset? I’m going to guess, yes.

Several years ago, when my son Jayden was about 3 years old, a woman approached me while I was working. I was wearing some sort of Autism Awareness t-shirt, as I often do. She very nicely asked me if I knew someone with Autism. I told her that my son had ASD and so did my cousin. We spoke for a few minutes after that.

She mentioned to me that she was a retired Special Education teacher and taught a number of children over the years with ASD, but there were far less diagnosed throughout her years of teaching then there were now. We spoke about school services and a parent/guardian/caregivers role in advocating for children like Jayden. She asked me how old my son was. She told me that I seemed to have a lot of knowledge early in my sons diagnosis regarding services and advocacy. I thanked her.

Here is where the conversation took an unexpected turn..she said this, and I quote, “You’re a young mom. Your road will be long and exhausting. There are places you can put your son and be able to visit with him as often or as little as you’d like. Kids with Autism don’t make friends or have meaningful relationships with family and friends. Trust me! I taught these kids for years. It’ll be much easier for you to live your life at your age. You should really consider it!”

After I processed everything this woman had just said to me, I was FURIOUS! I was hurt! I was upset! How dare this woman, that I don’t even know, say such untrue and hurtful things to me? I said quite a few not so nice things to her in return for her “advice.” The conversation ended immediately following my response.

Do I know what my options are as a parent to a child with a disability? Yes, I am very aware! Everyone’s circumstances are different and unique. Each family has to choose what is right for their child and their family.

To me, she was suggesting that I throw in the towel on my newly diagnosed son and look into residential options for him because it would make things easier. Make things easier for who? I hadn’t even had a chance to live in this new world with my beautiful boy! At some point in time, Jayden will be older, and so will I! I may not be able to provide the level of care he needs anymore and I may have to look for other living arrangements for him. When that time comes, I will cross that bridge and make the best choice for him.

The thing that upset me most, besides her complete ignorance, was that this was a person who once taught children like my son. For her to strongly imply, “Kids with Autism don’t make friends or have meaningful relationships with family and friends. Trust me!”, made me so angry!

Jayden enjoys his time alone, doing his own thing but let’s face it, so do you and I! He may not play with toys the same way his cousins and friends do…he plays with them his way. He may not sit down to play a game without guidance but one thing is for sure, this boy LOVES with his whole heart!

The relationships he has with his family and friends are pure! He loves to be around them! He hugs them, kisses them and plays with them, his way! He has formed and maintained many relationships over the years with the people who put themselves in his life, seamlessly. These relationships are not forced. I can only speak on Jayden’s behalf, but I know this holds true with many of you reading this.

Our journey is far from over. Our road has been long and hard. The best days of my life have been spent with my sweet boy and I would not give up a single day of seeing his beautiful smile.

Jayden is a non-verbal child but the smiles and love in these pictures of him with his family & friends, need no words!

“Alone we can do so little; together we can do so much.”-Helen Keller

Outside of my family & close friends, I often get asked about my involvement with Fall River National Little League at Dumont Field. With the 6th Annual “Batting for a Cause” Tournament coming up this weekend and next, I figured this might be a good time to talk about why this league is important to me.

I have been an active volunteer for 6 seasons and a sponsor for the past 5 seasons. Most people think that Jayden plays baseball there and that is how I got involved. I do not volunteer because I have a child who plays Little League Baseball. I do not volunteer because I have a relative who plays, volunteers or serves on the Board of Directors. I volunteer because 6 years ago, my parents sponsored a team for the first time.

At the time of sponsorship, Jayden was 3 years old and had received his ASD diagnosis a year prior. I simply asked my mother to ask the Board of Directors if it would be possible for the team she was sponsoring to wear an Autism Ribbon patch on their jerseys, that I would provide, to raise awareness and acceptance. Instead, Fall River National Little League took a simple request and ran with it! They purchased Autism Awareness flags to fly and hang on their fence! They placed stickers on the back of players batting helmets! FRNLL League decided to host their first tournament in 2010…at that point we didn’t realize that it would become an annual tournament! This tournament is called “Batting for a Cause.” 100% of the proceeds from this tournament benefit Community Autism Resources. All team registration fees, t-shirt and concession stand sales are donated! To date, this tournament has helped me raise over $34,000.00 but most importantly, they have sent a message to the youth of our city and the surrounding cities/towns…Different is not less!

Don’t get me wrong, it is a TON of work and there are few Volunteers to compensate for the amount of work that needs to be done, and it takes a ton of Volunteers to make this tournament happen BUT, the feeling you get when you are seeing everything fall into place, makes all the work, worth it…in ways I’m not really sure how to explain! I am grateful not only to the League for the endless hours and effort they put into this, but also, I am grateful to my family and friends. They step up in a HUGE way to volunteer in many different ways for this tournament. I don’t think they will ever understand how thankful I am for all that they do, always!

They wanted to do more to help children and families living with the daily challenges of ASD. They didn’t have to “adopt” a cause near and dear to my heart as their own, but they did! 6 seasons later, they are preparing yet another tournament to help local families like mine! They allow me to set up an Autism Awareness table to sell merchandise and collect donations and my parents set up a coffee tent sponsored by their business “The Coffee Pot,” and you guessed it, my parents donate 100% of the proceeds made from their tent as well! FRNLL has been adamant about continuing to grow this tournament and make it bigger and better each season. So much so, that they met with the city of Fall River with a proposed plan to build a third field! With a third field, they could invite more teams to participate in the tournament!

This year will be the biggest tournament they have held to date! In the past, this has been a 3 day tournament…typically Saturday & Sunday of one weekend and Saturday of the next weekend. This year, with the 3rd field, they are hosting 2 tournaments; An A Division Tournament & a B Division Tournament! The tournament dates are July 24th-26th & July 31st-August 2nd! Teams are coming from all over MA & RI to participate in this tournament! Jayden will be lining up with 11 of his friends to throw first pitches, to kick off each tournament!

I’m sure most people realize that Coaches and Board Members of Youth Sports Leagues are Volunteers and are not compensated for their time. With Little League Baseball, some of the Umpires coming from other leagues, are sometimes paid umpires. For this tournament, those Umpires donate 100% of their time so the money they would be compensated is donated!

 blog13

Fall River National Little League has given my family a place that feels like a home. A place where everyone knows Jayden and doesn’t pass judgment based on his differences. Instead, they embrace him and accept him for who he is. They have honored Jayden in so many ways over the past several years. They allow him to throw first pitches to kick off Opening Day & the Tournament. He’s received signed game balls, from the players & coaches of the team we sponsor after winning Championship games. A Coach had Jayden’s name printed on the back of his Coaches shirt. They’ve honored him as a “Lifetime Member” of the league and presented him with an All Star Jersey with his name on it and a hat. An Umpire who was retiring after one of the tournaments gave Jayden his jersey. Umpires also gave Jayden a hat and a beautiful photo frame with pictures they took with Jayden, the previous year. Players from other teams have given Jayden small gifts. This league has invited surrounding cities and towns to join them and in their efforts to raise funds, take action and to help spread awareness…the list goes on!

 

FRNLL has supported our family on and off the field! Many of them walk with our team, J.J.’s Hope & Friends, on walk day. They have also been Official Sponsors of our Hearts & Hands Walk for Autism as well as sponsored a number of Activities we have at this event!

 blog 20

There are no words to express my gratitude for these amazing people and this wonderful league, past & present! FRNLL may be one of the smallest leagues in my community but there is no doubt, that their hearts our HUGE! They are helping us make a difference in our small corner of the world and I am proud to be a part of that!

The Rewarding Unknown…

Like most parents of children/teens/adults with ASD, I struggle (sometimes more than Jayden) with planning new opportunities for Jayden. Knowing your child better than anyone else, you hope for the best outcome but, you always have a Plan B, C & D to be prepared for the absolute worst outcome.
As I am sure many of you can relate, we have missed a number of family functions and other opportunities, over the years, due to what type of day Jayden may have been having. Although Jayden may have had a rough time at a party, the zoo, at a store or in the community, we never gave up trying…and that holds true until today. We continuously expose Jayden to familiar and new places, regardless of what the outcome may be. If he had a difficult time today, we take him back and try again.
Continuing to expose Jayden to familiar and new environments/opportunities has opened up many doors for our family to enjoy new things but also, continue to enjoy our very favorite things! Of course, all of this comes with a large amount of planning ahead and don’t forget your Plan A, B, C & D!
On Mother’s Day 2014, I decided to try my luck. Registration would open for the Surfer’s Healing Surf Camp in Ocean City, Maryland. I watched the clock all day to make sure I logged in at the time that they announced registration would be open. This was the ABSOLUTE BEST Mother’s Day gift I could have ever received…in more ways than, at that time, I knew. I instantly received an email back that Jayden was in! I was beyond excited for our boy to have this wonderful opportunity!
For those of you who are not familiar with Surfer’s Healing, in a nutshell, Surfer’s Healing is an organization that holds FREE one day surf camps across the United States, for children/teens/adults with ASD. You can find out more about who they are and what they do by visiting their website http://surfershealing.org/
We chose the Ocean City location, over some others that were closer to us, because it was in August and some others were in September, and we were unsure about how warm it would be by then. So we decided to play it safe and take a chance! I started planning for our trip in May! Typically we do lots of day trips and overnight trips with Jayden, just a few hours away from home or week long camping trips no more than an hour away, just in case. This trip would be roughly 14-16 hours total travel; this would be the furthest we’d ever been from home and in unfamiliar territory. But, we’ve got this!
We booked our hotel, Castle in the Sands, right on the beach where the surf camp would take place, for 3 days, not knowing how Jayden would do. They were very accommodating when I explained to them that we would need a full kitchen because we would be traveling with Jayden’s food, as he is on a special diet and we would absolutely need a bathtub in our room and not just a stand up shower because Jayden is not a fan of showers.
The months leading up to our trip were worrisome, as Jayden increasingly began to struggle with what looked like anxiety & OCD and there were more bad days than good. Many times, I thought about cancelling our trip because of how “all over the place” Jayden suddenly was. BUT, I didn’t! I couldn’t! We’d figure it out (This is where Plan C & D came into play)! We had a plan for every possible scenario we could think up!
Guess what my friends? WE NEVER NEEDED Plans B-D because Jayden did absolutely AMAZING! So much so that we extended our stay, after the 2nd day, for the entire week! From the 7 hour ride there, adjusting to being in a hotel in a city where nothing was familiar, Surfing with the amazing Surfer’s Healing Family, changing hotels in order to extend our trip, to the 8 hour drive home and everything else in between!

10511603_715773935125842_7401523664364211731_o10511603_715773941792508_1048177982558139510_o

Honestly, I’d be lying if I didn’t say I cried like a baby until we were out of Delaware because of how proud I was of Jayden, how amazing our trip was, and how much we absolutely needed to get away. What a beautiful experience and opportunity this was for our family. The Surfer’s Healing Surfer’s and Volunteers were nothing less than amazing. They were so accommodating and so wonderful to us! We hope to take the trip again this year, even if Jayden doesn’t get into to the Surf Camp! The smile on Jayden’s face while he was surfing and the laughter we could hear coming from him while in the water was amazing. It truly was one perfect day! A little piece of my heart stayed in Ocean City.

1274121_715763778460191_3671059883750334381_o1274121_715763781793524_4792636934980029795_o
The moral of the story here is, sometimes the unexpected can be extremely scary for us as parents because we work so hard day in and day out to keep our children comfortable, happy and in their routines that they need and that we need! Each of you know what your own circumstances are and just how much you can push your child, and yourself, out of their comfort zone. If you don’t give things a try, regardless of the fear of the unknown, you’ll never know how an experience with your child could change your life forever, in a good way! This was an experience that I will forever hold close to my heart!  10590630_896743813672662_8450223553633980034_n

Walk Wrap Up, Through My Eyes…

As you may or may not know, we just held our 11th Annual Hearts & Hands Walk for Autism and Family Fun Day on Saturday, September 20th, at the beautiful Francis Farm in Rehoboth!

Through the hard work and efforts of all the families/teams/individuals who fundraised to support CAR and the FREE programs and services we provide, approximately $70,000.00 has been raised AND donations are still coming in! THANK YOU! THANK YOU! THANK YOU! We had a total of 595 participants and 85 volunteers this year! This event would not happen without our AMAZING families and volunteers!

This was our first year at a new location, and many things were trial and error, however, I have a working list of things to change/expand to make next year’s event BIGGER & BETTER! The input participants have given us, has been very helpful and it is much appreciated since our Family Fun Day portion of the event, is about us paying thanks  to YOU for your support and fundraising efforts!

In preparing to write this months blog, I was very torn on what to write it on…do I write it solely on “Walk Wrap-Up News” after just publishing a special newsflash about it? Something else? I decided to give you a very brief overview, and then decided to write about the walk through my eyes…

This was my 3rd Hearts & Hands Walk for Autism as Development Coordinator for CAR and Walk Chairperson. I spend most of the year organizing and preparing for this event, to ensure that things are organized and run smoothly and to ensure everything is safe and enjoyable to participants of all ages and abilities! I am very grateful to my Walk Committee and my Co-Workers for helping decrease my work load by taking on different tasks throughout the year.

As a mother to a child with ASD, this was my 5th year organizing and walking with my family team, J.J.’s Hope & Friends. This is where it all began! 5 years ago, I created team J.J.’s Hope to honor my son Jayden and my cousin Jerry Jr., who both have ASD. Throughout the years, we have made many friends and our team has grown which resulted in the slight name change to J.J.’s Hope & Friends, to welcome our new friends to join us in our efforts. These families who have joined us over the last 3 years, share the same passion as we do! They take ACTION, they raise AWARENESS and they help raise NECESSARY FUNDS to help CAR keep providing services to families, for FREE! These families, just like mine, have benefited from Clinics, Family Events etc. They recognize that although these programs are free of charge to them, they aren’t free for CAR. They can appreciate the effort that goes in to the planning of these programs and want to give back! I am proud to know these families and have them as part of my “team”.

As hectic as walk day is, I always pull away and take time to walk with my family because it’s one of my favorite parts of the day! In a sense, the whole day comes together for me, at that moment. I see all of these people who come together for something that is so much bigger than Jayden, Jerry and their friends. There is love. There is acceptance. There is awareness. There are hundreds of other people walking along side of my family, for the same purpose. It makes me proud to be a part of that!

I also take time to bop around and ask people how they are doing and if they are having a good time.  This interaction with families allows me to see many smiling faces, which truly sets the tone and the mood for the day. I am very fortunate to have an amazing and supportive family and group of friends. The days I spend with them laughing and having fun, are the moments I cherish and look forward to!  Nothing makes me happier than seeing other children/families enjoying their time together, the way we do!

The support I receive from my family & friends, no matter what wacky team fundraising ideas I come up with, makes me feel very proud! Not only proud of the work that I do but proud of where I come from!  I am the oldest grandchild on both sides of my family and have younger cousins ranging from ages 3 to 25 who have been walking or strolling along with us for the past 5 years. Same for my extended family!  Our youngest team member this year was my 3 month old nephew and our oldest was my 72-year-old Grandmother! The beauty of having such a wide range of age groups means that all different generations are being exposed to people with Autism, not just within their family! The little ones in my family see little differences, if any, in Jayden, Jerry and their friends. They enjoy the walk along side of many others with ASD, and to me, that truly is what it is all about. Bringing all walks of life together for the same cause! No judgments passed! Just everyone enjoying a great day together!

J.J.'s Hope & Friends

I must admit, the journey I’ve taken in life would have been very different if Jayden wasn’t my son! As long and difficult as some days may be, I wouldn’t change it! If it wasn’t for Jayden, I’m sure I would have still been involved with CAR because of other family members and friends but, not to this degree. Because of my gorgeous boy, I took initiative to get MORE involved! I am blessed to work amongst some of the most amazing people I have ever had the pleasure of meeting and do the work that I love so much!

My sweet Jayden <3

As Development Coordinator for CAR, I often receive phone calls and emails from parents, grandparents, family members and friends, of children with ASD, asking what they can do to raise funds for us, in appreciation for all we have done for their family. I enjoy hearing their stories about the positive experiences they have had at a family event or how grateful they are for the information we have provided them and how it’s helped them!

Prior to being on staff here at CAR, I too, was one of these parents! I was so grateful and wanted to give back…and still do! With the help of my family, friends and community, we have raised and donated $23,402 to CAR since 2010! It is such a humbling feeling then knowing that I could help CAR continue to help families like mine, for free!  With this said, I would like to share two of the most recent emails I have received, from families looking to do the same!

The first email I had received was from a woman named Barb. Her grandson has Autism and her family participates in our Hearts & Hands Walk for Autism. Last year, Barb reached out to me and offered to donate a few of her beautifully, handmade weighted blankets and lap pads for our raffle! They were a great addition to our walk raffle and the families absolutely loved them! One of the families who won the weighted quilt actually sent us a picture of her little guy, who fell asleep with it! I asked if we could share the photo with Barb, as I knew she would be happy to see how much her quilt was being enjoyed!

This year, Barb contacted me again! This time, wanting to raffle off another one of her lap-sized weighted quilts, as well as, sell some small items that she helped her granddaughters make. Their brother has ASD, and they were excited to help with this!  Barb had a different idea in mind this year, though. Rather than just raffling this quilt and selling these items the day of our walk, she has already begun selling these items with her granddaughters, as well as selling raffle tickets for the quilt! She is so excited to finish raffling the quilt on the day of the walk, where she will also draw the winning name! 100% of the funds raised from these items and the quilt raffle will be donated to CAR in honor of Barb’s grandson! We can’t thank Barb and her granddaughters enough for their beautiful work, commitment and generosity to our agency!

Barb's beautifully, handmade lap-sized weighted quilt

Barb’s beautifully, handmade lap-sized weighted quilt

Autism Awareness items. Handmade by Barb and her granddaughters

Autism Awareness items, handmade by Barb and her granddaughters

 

 

 

 

 

 

 

The second email I’d like to share is from a mom named, Amy. In her email, she explains how her daughter has participated in some of our events over the last two years. She also said this, “I think it is important for local organizations to get support, and this is our way of giving back for the events my daughter has enjoyed with you.” Amy goes on to explain that with the help of the gym she works for and exercises at, LiveLifeBelieve Fitness Center in Plymouth, they would be hosting a fundraiser for CAR on April 12th. They were looking to make this a casual adult night out with music, appetizers and raffles. Amy said “My hope is to help people understand the community based needs of autistic people and families and that funds for local organizations like CAR serve a unique purpose.  While every charity has its place, I think it is important to make people aware exactly what they are supporting when they make a donation and not just automatically donate to the big names with big advertising budgets.  In a perfect world, this event will contribute to a culture of acceptance and diversity appreciation in my community, which will benefit my daughter and her peers.”

On April 15th, I was excited to receive another email from Amy with the details of how her event went! “Our autism awareness event included music, karaoke, food, and spreading information about ASD and CAR’s role in the community.  We also raffled off items donated from area businesses, one of which was an original painting created by local preschoolers on the autism spectrum.  My own daughter titled it “It Looks Perfect.”  🙂  It was a relatively intimate event, but a great success and I’m proud that we made the amount we did.“ Amy was able to raise $837 with this event! Way to go Amy! We are forever grateful for what you have done!

Autism Awareness Event at LiveLifeBelieve, Plymouth MA

Autism Awareness Event at LiveLifeBelieve, Plymouth MA

Autism Awareness Event at LiveLifeBelieve, Plymouth MA

Autism Awareness Event at LiveLifeBelieve, Plymouth MA

 

Autism Awareness Event at LiveLifeBelieve, Plymouth MA

Autism Awareness Event at LiveLifeBelieve, Plymouth MA

Autism Awareness Event at LiveLifeBelieve, Plymouth MA

Autism Awareness Event at LiveLifeBelieve, Plymouth MA

Like Barb and Amy, as parents, grandparents, family members and friends, we want to make a difference, a difference in the lives of families living with ASD. Even if just for today, that one phone call seemed to lift the weight of the world off your shoulders because someone can relate to your struggles, we have stayed true to our mission.  We can continue to offer all that we do, to over 3,000 families in our service region because of the generosity, thoughtfulness and commitment our families continue to show us. We couldn’t do it without you!

“Few will have the greatness to bend history itself, but each of us can work to change a small portion of events. It is from numberless diverse acts of courage and belief that human history is shaped. Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring those ripples build a current which can sweep down the mightiest walls of oppression and resistance.” ― Robert F. Kennedy