It wouldn't be enough for God to have granted me Alexis - a doll of sorts- non-verbal, non-ambulatory, but happy and lovable. Sure, glasses, hearing aids, g-tubes, CPAP and suction machine are just some of the 'standard issue' for a kid like her. Heck, in many ways, we got off easy because she only stops breathing at night and she only aspirates liquids (not her own saliva).
I as well got Version 2.0, Jessica. A doll in her own way. Social, engaging, eager, interesting but as the years have gone by more differences appear between her path and the path of her peers. Diagnosed with a pile of unknown disorders, supposedly related to her cardiac history, or other unknown genetic 'features'
We've mulled over this information for 9months, so why share it now?
Well, today was the official notice given by her camp "Not All Welcome Here". Story goes like this, she started at camp July 7, after coming back from family vacation.
No issues reported until July 17 when caregiver who picked her up was told that Jessica needs some sensory toys at camp to help her get through the day.
Provided sensory toys July 21.
Fast-forward, no additional comments until July 28, when I was called and asked what other consequences they can provide to Jessica because of her poor interactions with other campers (touching, kicking). I suggested additional sensory needs that she has and alternatives to where I think she is having issues with the camp routine. When arrived for pick-up, I was told in front of Jessica that she had additional issues. I suggested that she be given a time to play with play dough, use of her sticker reward chart and additional movement activities that will help her.
Then, Tuesday July 29. I bring in additional supports including simple reward sticker chart. No phone call all day, so I assume better progress. When I went to pick up Jessica, I was sent with Jessica into the Directors office - where he and assistant director told me "She can't come back until she has a 1:1, here is the incident report from today "Where Jessica has pushed a girl into the swimming pool and collided with another girl." To be honest, I can't remember what the sheet of paper said because a) they were discussing these things in front of Jessica, b) I was livid that they hadn't even implemented any of the suggestions and they hadn't even called me to warn me.
Then the kick in the guts that prompted this post,
Jessica was kicked out of camp. Not All Welcome Here.
Salem, NH Boys and Girls Club-- I'm sad for you. Jessica is a blessing, just like Alexis. I'm sad that your staff couldn't see past her special needs, see her love, build and cherish the beautiful spirit that resides in her soul. I'm sad because you couldn't help to make accommodations in your ways of working that would benefit more kids than Jessica, I'm sad because you couldn't spare time in your day to call a working parent to simply ask them to come into the office before getting Jessica. I'm sad because you had the conversation about her behaviors twice with her present - not realizing that every time she is singled out as "different" or "not your kind" - her spirit is broken. I'm sad because no one offered a friendly good bye, but treated her and me more like a good-riddance. I'm sad for all the special kids that you can't open into your heart.
I'm happy you have let us know "Not All Welcome Here" because we have learned on this journey as special needs parents - who our friends are and who has our backs. I will happily create a program for Jessica for the remainder of the summer that supports and loves all parts of her special spirit, the one you couldn't see.
