Inclusion can be scary

We fight for inclusion- we fight for our kids with different abilities to be given equal rights to education-to programs, in groups. I fight for people to see E-V before Down syndrome- and then you get the email " you have been invited to Reese's 8th birthday party" excitement- happiness- "inclusion" and then fear and panic sets in. I pray everyday that the kids in E-V's typical 2nd grade class see her for who she is, I also pray that E-V befriends the kids in her varied instruction program class or as they are called the "VIP's" ...for as much as I want the typical kids to treat E-V the same, in my heart I know its just as important that we as E-V's family & friends also befriend the kids that are in her VIP2 class and really all children- no matter what their abilities are. To see the world through a child's eyes and for me through E-V's eyes- she doesn't see difference or color or race or any type of different abilities - she just see's people who make her smile- laugh and help her through her days. I want so bad for E-V to be valued and excepted- every time we get that invite- I feel extreme anxiety- glad she was invited but fear of what's going to happen once we get there. The fear of the unknown- while other parents drop their kids off- I stay and try not to be that helicopter mom hovering over her every move but I know I have to be there to help reinforce her actions & behavior. When we walked into 5 Wits- we were running late- I could see a group of girls standing at the top of the stairs- the minute we walked in they all started yelling "E-V is here ...E-V is here..." my heart sank with happiness- as they came down to help her up the stairs..my mama heart melted into a puddle of love. As they conga'd around and did london bridge with her (her favorite game/song) until it was time to go down for the adventure. When it was time to go down - two of her friends took her by the hands and helped her down the stairs. During the adventure there was not one time that one of the girls- didn't come over and try to get E-V engaged, even Reese's brother came over to try to coax her to interact. She was just as happy hanging in the background watching the girls figure out the puzzles, light up the lights, come up with the light scheme to open the doors- it was quite the adventure for sure, but I never felt out of place. Once the adventure was over we went back up to the party room and had pizza, soda, brownies & ice cream- sang happy birthday. The girls love to ask E-V questions to hear her say "yah" over and over. Towards the end Reese said "who thinks E-V is the cutest" they all raised both of their hands including E-V. Reese's mom and other moms that came in to pick up their kids said "E-V is quite the celebrity"... This is the 2nd birthday party E-V has been invited to and just like the first- I left feeling like my heart was full - E-V's friends from school truly love her. Even Reese's dad said they are learning sign language from E-V. This mama will sleep peacefully tonight and will say a prayer - and thank God for putting people in our lives that help me see all of the positive things in this world.

Building our community where ever we go

Yesterday while driving back from the MDSC Buddy Walk in Wakefield MA- I remembered my blog...and how long its been since I have posted ...what I was feeling while driving, wishing I would have recorded what I was thinking at that very moment. We moved to MA almost 1 year ago, we left a very close knit DS community in Cincinnati (one of the best in the country). We have been fortunate enough to move across the country- visit different states- become part of each and every DS community- no matter what state we were in. We started in RI where E-V was born, the funny thing is when E-V was born I had 0 connections in Rhode Island in the community. I was scared, it was all new and I didn't reach out as much as I could have or should have. After we moved I met a few local Rhode Islanders who have become lifelong friends as well, Steph- Em and many others. When we moved to Orange County CA, the DSAOC simply blew me away, amazing community, families driving for over an hour to make the monthly family support meetings. We became part of the DSAOC family, we joined a group of parents who were each assigned to two local hospitals . We would visit the social workers, make sure they had current DS info, intake fax forms etc. After two years we then moved to Texas, we were about 40 miles south of Dallas. The DS Guild of Dallas was very welcoming and felt like part of our family. I became part of the parent outreach program - for new parents who had questions or just wanted to talk with another family they would give them our contact information. After 1 year I was offered a job in Kentucky, we had never been to Kentucky. I reached out to a few local groups, DSAGC, I became connected to the "Eastside Moms Group" Tika Tollett & Missy Skavlem, as well as Martha from Early Matters and many other families. I still look back and am amazed at how much this group not only welcomed new comers but made me feel like I had known them forever. Tika went above and beyond trying to help us find a rental house, everyone in the group offered suggestions- looked in their neighborhoods. Martha from Early Matters called me, texted me- she welcomed us with open arms and so much support. We were very active with all of the wonderful opportunities that the DSAGC offered its local families- from Music Therapy, Moms night out, monthly play groups that gave our kids the chance to try so many different things.I have to say I really struggled leaving this community. They are friends who are now lifetime friends. Tika and I with our little troop went on so many memorable adventures together. They are women & families that I will stay connected to forever , visit when we can and we celebrate our kids achievements and cry together with their struggles. We share our IEP and inclusion idea's. This group of families holds a very special place in my heart. A M A Z I N G is one of the words I think of when I think of Cincinnati. Now its been almost 1 year and we are now in Walpole MA. I finally got to meet the beautiful miss Autumn and the McDonough family, Megan and I have been online friends for years. Its funny when you finally meet in person, I wasn't nervous it felt like I was driving to an old friends house. I have became now accustomed to where ever we go- we always have our DS family and MA has not been any different. Right after we moved here I got to meet a fellow Reece's Rainbow cheerleader & supporter Kathleen Dye. Meeting Kathy in person - I felt like we have known each other for our whole lives - another long lost sister? lol..Ava & E-V have regular play dates. Kathy has gone above and beyond trying to help us with every connection we have needed, she helped connect us to an awesome Advocate & friend: Laurel Collins(Laurel is an amazing mama, she even planned for E-V a secret birthday party in June). Kathy helped us get connected to Boston Ballet and she suggested we attend the Wakefield Buddy Walk/ MDSC. I drove to the Buddy Walk a little apprehensive, why? I hadn't planned on going (Im a planner) we hadn't registered, nor did we know anyone who was going. There is one thing about the DS community where ever you are - you are always welcomed. I felt the same way yesterday- we joined in the line of walkers- walked through the welcome line of cheerleaders/supporters with E-V high five-ing every one and her smile couldn't have been any bigger. I was very thankful. This is a safe place for us, a place where the only thing you see in everyones eyes is love for your child. I can't explain what the feeling is not having to worry about things that happen outside of our community- a place where everyone just smiles and says hi, asks E-V what her name is and how old she is, where does she go to school- you know the "typical" things parents are asked when they are out in a big group of peers & their families. When I attend these events, my soul gets refilled- my heart is brimming with love and admiration for every family that I saw yesterday. I am thankful for the people who reached out to us by walking up and introducing themselves to this mama and her little beauty. I wish you could feel what I felt in my heart yesterday- for a few short hours the only thing that existed was having fun, dancing, listening to Ayla sing, enjoying all of the kids playing, seeing some local dance parents, and watching E-V feel like a princess. For a few hours nothing else mattered..