Friday, October 28, 2016

Things that still sting

To say that the start of middle school has been bumpy would be an understatement.  It's been a downright cluster fuck.  We keep chugging along because we are determined to get this to work. I will email, phone call, and or meet with anyone and everyone under the sun to get all the ducks in a row for my Kiddo.  It's not even an option.

But I would be lying if I said this stuff wasn't it taking it's toll on my own mental well being. When you are the parent and number one advocate for you kid, you don't get a choice to hide under the covers and give up.  I used to work with this population as well and I think back to those parents who it seemed to me just didn't give a shit about their kids.  Maybe it wasn't that they didn't give a shit. Maybe they had just decided they were done with all this never ending stuff.  They had just had enough.  I mean, how many times can a person be overwhelmed daily before they just say shut down?

Or maybe they just never started. I'm not sure but I'm too far in to walk away.

There are things I have gotten used to with my Kiddo.  Things I have become numb to and things I know longer get my knickers in a twist about.  I am focused on getting Kiddo comfortable with middle school. I can't care about the stupid little stuff because I cried over that long ago.  Then something comes up out of the blue that knocks the wind out of me.

This time it was the 6th grade class trip.  That he wasn't included in.  I saw it on the calendar.  I received the general email blasts that all the parents got about it but it never came up that he was joining all the other 6th graders on it.  No permission slip came home.  No word was mentioned.  Not even an explanation.  Nothing. Nada.

Prior to this school, Kiddo went on every class trip that all the other typical kids his age went on.  He and his classmates were included.  It wasn't even a case of "Oh gee, we're going to be swell and LET him go."  It was "This is the date and pack a lunch.".

And this is where stings.  His behavior has not been ideal. I know if I bring it up the trip, I'm going to get that thrown right back at us.  While the one to one aide has finally been hired, that person still has to be approved by the Board of Education and be fingerprinted.  So I can't even say "But he'll have his one to one!".

It hurts that we weren't even given the awkward phone call or email about it though.  Not even a "Hey, he's still adjusting.  Maybe next year?".  I could come to terms with that.  Right now, it's just another thing that just makes us feel left out.  He heard other kids talking about it in passing.  He knows it happened.

Did I mention this is also the school that does a big fundraiser "Volleyball for Autism" event every year? Which is great that they do because they raise a crap ton of money for local autism charities. I think that rocks but there is a part of me that thinks "How about some charity towards my Kiddo? How about including him? How about giving him a chance to prove that he can do it?  How about at least giving us the courtesy of explaining why he's not included?" I'm pretty sure when this event rolls around the school will be quick to send home information on it and how we can help promote and fund raise with them.

There's just something about that which makes me think "Don't call us. We'll call you, when we need you."

The thing is inclusion means the good and the bad and at least an explanation as to why something won't work and perhaps trying to find a way to make it work in the future.  Not just bits and pieces here and there.
This damn trip was like a line the sand.  I have to pretend it doesn't sting as bad as it does because I have to pick and chose my battles.  But all I can think is if the Kiddo noticed there was a trip he didn't go on, I bet the typical kids noticed it too.  At the same time, he's still in the weeds with this transition.  I guess we'll just have to let this one go.

Till next year. ;-)

#TeamQuirky will rise again.  After this round. 


  1. Unfortunately, I can can totally relate!* Our son was excluded from the Christmas program one year (like it's Broadway or something), it's so gut wrenching to read this. I always say prepare for the worst, but hope for the best. We all know what can go wrong, but imagine what amazing opportunities can occur if they go right!* It's devastating when staff members are a bigger obstacle, than the kids actual disability. Continue to fight for these inclusion opportunities.

  2. These things have happened to my kiddo too. I don't think I've ever even thought about them calling to explain why he wasn't included, just sad that he thought about. Or maybe he was thought about and the consensus was that they (staff) didn't want to 'deal' with it. Which is sadder?? Also, I am a special ed teacher, autism teacher to be exact, and I constantly have to beg borrow plead for info about the fun, extra stuff regular ed is doing. Each time, they brightly reply "of course! we are doing blah blah blah it's going to be so much fun!" And each time they rely the day before or sometimes even the day of......super helpful ladies! I will continue to be an advocate even when it's sad or overwhelming or annoying or any other emotion you can think of or even ones you can't. This life is a roller coaster but I don't think any of us would get off the ride :)

  3. I totally relate. My son is in high school now and is doing well. In middle school I decided I was going to push back - all sugar and spice, but assertive. I got permission to talk to the peer-to-peer support group, I showed up to volunteer at lunch (just to see what was going on), I got myself elected to the PTA board. I wrote very polite but pushy emails about field trips and extracurriculars, to make sure my son was included. When I was the middle school PTA president, I pushed for autism awareness activities that actually included and benefited students with autism. It wasn't hard to do - it mostly involved showing up and asking questions about my son's civil rights. The result was an easier transition to high school and my son doesn't sit alone at lunch anymore. He went to Homecoming with a lovely date. He's included in everything and he is happy.

  4. Well this really ticks me off!! We have been lucky that we were always told when something was coming up and whether or not the school thought it would work, or what the options were when my daughter was still in district. I think that is the least they can do, after all you a member of the team. Sorry you are having such a tough transition. xoxo

  5. Nice example they set for his neurotypical classmates: "Hey kids, when someone's different/has challanges/has a tough time what do we do? That's right, we exclude him because God forbid we be nice and accepting and helpful."

    Anyone can raise money for a cause, it doesn't mean so much, as far as I'm concerned. It's actually doing what you're promoting that's hard and to be appreciated and it's where plenty fall short.

    I am sorry Kiddo. I hope one day these people will see their mistake and change their attitude. You deserved better.

  6. That's just disgusting. How dare they ever use the word inclusion. They should discuss it with you. Even if hey can't find a way for him to go there should be a discussion and a sorry and an explanation to kiddo. He's not stupid he will know. If you can find the energy make THEM feel the shame not your son.Some days like you say there are bigger battles to fight.

  7. My daughter only goes to school half days because the school said they didn't think she could handle a full day (even though she had been since PreK and is now a 4th grader), and has a one to one aide (always has). It feels like she's excluded to most things to me. Today for instance is the Halloween thing but it's at 2 and her day is over at 11:30. Field trips I am always willing to go on and help out, and have when they let me know about them. It's easily the hardest part of every school year and even harder this school year.

  8. I have a daughter with down syndrome and one year her special needs class was not included in the school concerts. I talked to the principal and wanted them included the next time. Well next time came around and they "included" them by having them sit on the floor like dogs with sticks the bang together. I could not see any of them. I was livid! That year they also got "overlooked" going on the school Halloween parade around the school. The teacher claimed she was new and didn't know about it. My husband and I spent about two hours in the principal's office when my daughter cried every night that she was sick and didn't want to go to school. Something wasn't right with the teacher, so we switched schools. Best decision ever! Our daughter was much happier! She's 25 now, and in her last year in the school system. This all happened in elementary school.

  9. I relate to this one! It nearly tripped us up in May, when the annual year 5 and 6 three day camp was on. Even before the end of year 4 she was talking about being "a big girl now and going to camp!" I should know by now that more thought was needed on this!
    This wasn't just her SE class, but the whole school, so about 95% of the kids were mainstream neurotypicals. When all the forms were handed out, she didn't get one. What I got was a devastated daughter climbing out of the taxi. Thankfully her escort was on top of things and could tell me what happened, as she couldnt utter the words herself.
    After calming her down enough for me to hear again, I rang her teacher. Over the next few days we worked out a way for me to attend the camp and go as her escort. This is when I realise what a great decision being a stay at home mum was!
    If you're interested I detailed the whole thing in my blog in May, over three long posts LOL!
    I hope it works out better for him next time.

  10. My daughter's middle school does a sixth grade camp every year. It's tradition. Every sixth grader goes.

    Every Sixth Grader.

    Can't afford it? They'll cover your cost. Don't have a sleeping bag? They have a stash of extras. Have an intellectual disorder which requires you to have a one on one aide at all times? Or Autism? No problem.

    I honestly didn't think my daughter was allowed to go. Then one of her teachers got a hold of me. "Oh, she HAS to go to camp! Everyone goes to camp!"

    I had reservations - who'll be with her? Who'll watch her? You know she needs lots of hygiene help?

    Teacher was all "No problem. I'll be there. As will other SpEd teachers and aides. The school nurse also goes and always bunks in our cabin. Now sign these forms so she can go to camp."

    So my daughter with moderate cognitive disabilities went to camp - a sleep away camp for three nights, four days. With the rest of the sixth graders.

    Because EVERY sixth grader went. No matter what.

    THAT is Inclusion.

    What you're dealing with is bullshit.

  11. My daughter has Down Syndrome and was in a life skills class in her elementary school. The first year she was there, her class was not included in the school's annual Halloween parade with the rest of the school. I was livid and when I brought it up to the teacher she wrote it off that she was a new teacher to the school and didn't know about it. At the same school they had a Christmas concert where all the kids sing. Again the class was not included. I talked with the principal and the next time they were included, but we're Sat on the floor in front of the stage like dogs and given wooden sticks the knock together when told. We had another meeting with the teacher and principal after that, that lasted two HOURS,the teacher was HORRIBLE with the kids and showed them no warmth whatsoever. Because my daughter complained and cried every night that she didn't want to go to school the next day, we pulled her out of that school. Best decision ever. She had a very warm loving teacher who loved my daughter and sent her Christmas cards and letters every year when she retired and moved out of state. At the new school they WERE included in concerts. My daughter stood on stage with the rest of the kids and did her hand motions to the songs like the rest of the kids.