bountifulplate

This past Sunday, the disability ministry that I am blessed to be the program director for had a picnic that started about 11:30 a.m. We had a handful of firemen and a policewoman there who brought two big fire trucks and a police car to look at. We also had face painting, a petting zoo, lots of games and yummy food. About 2 p.m., a van pulled into the parking lot. The doors opened and five disabled residents from a group home got out. I went over to welcome them to our picnic and directed them to one of the tables. I then sat down between two of the women. The lady to the left of me immediately fell asleep in her wheelchair. The gal to the right of me who looked to be in her mid-70's was looking straight ahead with a big scowl on her face. She looked incredibly ticked off and mad, like the last place in the world she wanted to be was at a picnic talking to someone she had never met before (me).  I asked her a bunch of times...

    I know that you felt uncomfortable in the music school waiting room last Wednesday night. I saw you shifting in your seat, like you would rather have been anywhere else in the world, but where you were.  When I started talking to my friend in the wheelchair, I could see you staring at me. When the two young women with special needs starting chatting with each other, I watched you look at them and then turn away. I'm guessing you felt out of place when the three moms of the adult children with special needs started chatting happily amongst themselves at the table next to you. When I was waiting for Dominic's teacher to come and take him back for music therapy, I could tell by your expression that you were trying to guess what his "disability" was. When I saw your son coming down the hallway from his music lesson, I watched you bolt of your chair and rush your son out the door. When Dominic and I were walking to our car and you ...

Back at the beginning of the summer, Lauren decided that she would start a "bucket" list of activities that she wanted to do alone with Dominic. Given that she has her own car and license, I am not required to be a "chauffeur." This was an idea that she thought up on her own - I had no hand in it whatsoever. She told me recently, "it's fun to do "sibling" things with Dominic!!" In all ways, they are "typical" siblings. So far, they have watched a movie in a movie theater:   visited the library, played tennis and went for Slurpee's at the  7-Eleven ! This summer has been a bit of an adjustment for both "kids," because Lauren has a summer job and she is working long and late hours. When Dominic hears her car pull up in the driveway, he will come to the front door as she comes in and say, "surprise, welcome home La-La!" It definitely puts a big smile on her face (and mine). Lauren told me recentl...

What if you had the chief of pediatric rheumatology at a well renowned hospital in the Midwest, look you right in the eye after four visits and tell you that even though your child had the positive genetic marker and the family history for an autoimmune disorder called ankylosing spondylitis  that wasn't what she had? What if you had been told your child was, "failing to thrive" at age 14 and you watched as her weight plummeted to under 90 pounds, feeling helpless and unable to help her? The child I am talking about is my daughter, Lauren.  When the chief of rheumatology looked at me that day and told me basically that nothing was wrong with my child, I knew that something had to change immediately. I needed to stand up and speak up. I was not going to give up, it's just not in my nature. I have advocated tirelessly for Dominic since he was diagnosed with Autism at age 2 1/2 and with Lauren it was ...