Tuesday, July 29, 2014

Not All Welcome Here....

So, today I was confronted with the brutal reality that I'm a mom of 2 special kids.

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.





11 comments:

Justin and Victoria Nelson said...

I'm boiling mad and with a heavy heart reading this.
It is their loss.
I'm so sorry you had to experience this. We are here for you - from afar. You are not alone.
Sending love and hugs,
Victoria

Ed oneill said...

Umm. Where do I start. First hugs. Secondly wouldn't such news from came be better received if the camp approached the issue at hand honestly, a statement like " I am sorry Chtherine but we don't know how to help Jessica. We do love having her but I don't think she is having as much fun as she should. Could we help in any way to help you find a camp where she will be happier, I found there two camps that sound good but I am not sure if they are best. So sorry me and my staff has failed Jessica" 3rd is this woman new ? Has she ever met you?or is she just crazy?

Anonymous said...

I don't have kids, but if I had a healthy child with no health issues I would not send my child to that camp. I would not send them to any camp that would not allow kids with various health issues there. I would want my kids to interact with all children.

Gingersnap said...

I am sorry that you had this experience. I had a similar experience at a YMCA camp with my ASD child who was coming home with incident reports daily and I was being called to pick him up because of his behavior. Unfortunately not all camps are equipped with staff who have experience working with children who may have special needs. I learned the hard way and have invested a lot of time and money into researching and finally finding a camp that is inclusive for children with special needs. Please let me know if I can help out in any way.

Samantha Brook said...

That's terrible! I'd say you're better off not having her there though. Clearly these people are not able to care for your child in the proper loving way she deserves. Makes you wonder how they are with the rest of the kids there honestly. Every child comes with their own unique characteristics. In an age where it seems half the kids are diagnosed with ADD and hyperactivity disorders, how many will be "welcome" there and and cared for as they should be?
Your little girl is beautiful and I bet she thrives in her new program. Don't let ignorant people break your spirit or hers.

RoseMarie Mallon said...

Sigh...Thank you for taking the time to write this. As a mom of 4, the 2 youngest with special needs, I hear your pain.
The fight for good resources never ends. I can tell you honestly, It's worth fighting.
Shake this one off. Enough energy spent on useless people. Move on to more happiness :)

crfogg said...

Absolutely not professional, let alone empathetic, kind or polite. I am so sorry this happened to you. Jessica is better off elsewhere, no one deserves that treatment. It doesn't make it any easier for you but I am so sorry this happened.

Anonymous said...

There are appropriate ways for a camp, or a school, to handle this kind of situation, and this was not it. I'm so very sad for you and for Jessica; it's challenging enough to raise a child outside the parameters of "typical" but to be called out and reprimanded for it is unconscionable. I agree with Ed O'Neill, that would have been a far more constructive and healing way for them to deal with things. I wish you luck in finding a better placement for her, one where her gifts are celebrated and she is allowed to grow and shine in her own way.

Anonymous said...

I am sorry.......Some camps do not have the staff who are trained to handle campers that are different. In all the camps I have worked in the camp staff is very young. Shame on the camp for not following through with your suggestions...why ask for something if you are not planning on using it! Please don't think all camps are like this.

Anna A said...

After reading this, "Not all welcome here" should turn into..."No one wants to come here".
A message to the Salem NH Boys and Girls club, you picked the wrong mom to mess with!

Amanda said...

Catherine, how can I contact you? I'd like to hear more of your story and more about your family. Things like this shouldn't be happening, it's got to change for the sake of all of our kids.
(I'm local- within walking distance of the Boys and Girls club, in fact!)