School

Day 3. I wrote this during lunch today so
1) I had zero time to edit, apologies in advance
2) I have never taken a lunch before today
3) There is no way I will get through 30 days of this without being fired
4) I like taking lunch.
Thanks for reading!

School

I dropped Coleman off at school today – I don’t get to take him very often because his day starts at 9 and I have to be at work before that – but Billy had an early appointment today so I took him.  I love taking him – I wish I could take him everyday.  As I handed Coleman his backpack and hugged him, I knew it was school that I would write about today. 

Coleman started school shortly after his treatment for Leukemia ended.  He started in the integrated pre-school program run by our town.  At the time, the program consisted of a few special needs children alongside the majority of the class that were the ‘role model’ children.  And by role model, I mean the intention was for kids like Coleman to see how ‘regular’ kids performed in a class setting – from hanging up their backpack, to circle time, to snack, to recess.  I have a special respect for the families that chose to put their children in this class.  You had to apply specifically for your child to be a role model in the class – and it was heartening to see how many people did.  I applaud their desire to teach their child early about social awareness and acceptance.   In a town of overachievers, it would be easy to poke holes in the strength of the academic program – and yes, I know it is preschool.  But concerns like  “how can my child get the education he needs if the teachers are focused on the special needs kids?” can easily morph into something more, and the desire stay ahead of the curve in academics can make otherwise normal people act a little wacky.  As it turns out, in fact, there were more adults in that class than in any other class in the school – and no child was worse off for being there. I feel grateful for the families that stuck with the program.

As time went on, each year the rest of the children would move up a grade, but Coleman would stay in the same ‘grade’ – Kindergarten was several years.  Part of me didn’t mind this at all – more and more children came to know Coleman – an important piece for me – and generally speaking, younger children didn’t seem to notice that Coleman was any different from them.  I suspect things might be a bit different if he was in a class with other typical 9 year olds.  In any case, he grew to like school and the pattern of the daily routine definitely agreed with him.  I couldn’t – and still can’t – volunteer in the class, something I loved to do when the girls were in kindergarten.  Coleman would see me and immediately lose all focus, instead thrilled I was there but hot on the path to get out of there.  “Go home now?” “Go home now” “Go home now” until really I was more of a distraction to the class than any help.  I always felt bad when the notice would go out for the class volunteer schedule, thinking everyone must wonder why I never volunteer.  Catholic Guilt working it’s charm.  Not visiting the class, and not having Coleman talk about the kids, made it difficult to get to know anyone.  He certainly wasn’t invited anywhere for a playdate – and of course I wouldn’t expect that.  He doesn’t ‘play’ with other kids, doesn’t yet understand play – we are still working on that.  But not knowing the kids, not knowing the parents, always made me wonder what everyone thought about Coleman.  Are the kids friendly to him?  What does he do during recess?  Do the parent volunteers know he has autism?  Until one day I met Reese. 

Coleman and I were at the ice rink for one of Emma’s hockey games and the most adorable little girl came up to us (Coleman was sitting beside me watching his DVD) and she leaned into him and said “HI COLEMAN!!!”  Coleman, ever so strong in social graces, didn’t even look up.  “COLEMAN ARENT YOU GOING TO SAY SOMETHING TO ME?”  I was fascinated – children rarely talk to Coleman, and I had no idea who this child was – so I asked “How do you know Coleman?”  And so started a funny, lively little conversation with this beautiful girl that was in Coleman’s class.  She told me all about Coleman in school, and how he “always says the same thing, over and over, and I ask him why but he just keeps saying it!” and how he “always says ‘Hi Reese, Hi Reese, Hi Reese’ and even when I say Hi back he just keeps saying it” and how he doesn’t eat any of his snack, and how he wants to play tag at recess but he never runs away…”  I couldn’t get enough of her.  I kept asking her questions, anything, just to keep her there, wanting so much to hear more about this side of Coleman I couldn’t see.  It was a precious fifteen minutes.  Coleman never so much as glanced at her, but I knelt down and quietly told her how much our conversation had meant to me, and thanked her for being so kind to Coleman.  She smiled, shrugged and skipped off.  My point here is that she just thought of Coleman as another silly boy in her class, and that was it.  Not weird or strange, just silly.  And that made me happy. 

As Coleman aged out of the preschool program, it was suggested at his annual IEP meeting that we consider looking at some outside placements.  The Special Ed Coordinator was kind enough to call me ahead of the meeting and gently let me know this was going to be the recommendation.  I was devastated – I tend to take things so personally – so of course I went straight to “you don’t want him there” instead of ‘you can’t service his needs there”.  The meeting was upsetting – simply put, they didn’t have a staff/program in place for an Integrated Kindergarten.  They only had the pre-school program so there was nowhere for him to go, except out of district.  I’ll admit I didn’t know much about this option but I knew I didn’t want it.  I wanted him there, in the school he had grown to know and love, with people who knew him and appreciated him, a place in our own community with folks who understood him and would never hurt him.   Why was there no program post-preschool?  The staff was frank with me, and to this day, I appreciate their honestly.  It’s an awful fact that in the IEP world of Special Ed – it’s a “You Against Me” mentality and while the school wants what is best for the child, the best is not always the financially most efficient so you get instead what maybe is the second best option, or third best option.   In this case, I knew that out of district placement was expensive – often parents fight for that – so I had a hard time understanding why there wasn’t an in-district program in place for these kids to proceed into from the Integrated PreSchool.  Billy and I returned home, worried about Coleman’s future.  If only we could get them to do a kindergarten program.  I did some brief research on town financials dedicated to special ed overall and out of district placements.  I then crafted a letter to the school, and to families with children in that school, detailing special education costs, out-of-district costs, our desire keep Coleman in-district, and Coleman’s rights to an education in our town.  I was seeking support for a Kindergarten program.  While I had some favorable feedback, it wasn’t what I had hoped and I began to acknowledge that a change was likely in the near future for Coleman.  I really don’t know what impact the letter had, if any, but it wasn’t long after that I received a call from the Special Ed Coordinator in town informing me that they had decided to start an Integrated Program for K-1 and Coleman would be one of four children in the program.  Victory never tasted so sweet. 

This year marks Coleman’s third year in that program, and his fifth year at this school.  He is technically a student in the first grade there, but spends the majority of his day in the substantially separate class they have established for the Special Needs children.  He’s a bit famous there too, a Mayor of sorts in the tiny community that is his school.  And, when he is good and focused, he is quite endearing.  He has a charm about him that melts you.  He is loved the school over.  On the rare occasion I get to be with him during school time there, he is greeted by everyone passing by – secretaries, teachers, kids, parents – everyone saying “Hi Coleman!”  Nothing has made me feel better about the school than walking down the hall with him for that.  

Coleman, however, is once again aging out of the program.  And we can either sign a waiver to keep him there one more year (there is a state law limiting the age range to 48 months for special education students within one class) or explore other options outside of Hingham for Coleman.  My heart wants to keep him right where he is, but my head thinks we need to explore other options.  Billy and I are trying to find the balance in priority between a mediocre education but loving environment in our community vs a better education, perhaps less loving environment out of our community.  In defense of the former:     

·         The teachers of the regular classes in which he integrates with his aide (art, music, gym, spanish) are good to him.  Just yesterday, they had a school evacuation, something out of routine for Coleman that would typically be a disaster.  Worse, it happened during gym, a special he adores  (not because he plays but because he loves to be with the other kids), so this could have been a deal-breaker in terms of good behavior.  But Mr. B, the gym teacher who doesn’t know me but who I love because of this story, saw Coleman starting to fall apart.  And he went over to him, and said they were going on an adventure outside!  It was going to be great, everyone was going – and didn’t he want to come to?!  He saved the day for Coleman.  Turned disaster into triumph.  All because he knew how to handle the situation.

·         I remember one day Emma was going to dinner with a new friend from school.  When they came to pick her up, I went out front to meet them.   Of course Coleman wasn’t happy about this  – he absolutely is not a fan of Emma or Abby going anywhere, and certainly not happy if I happen to leave the house even for a moment without him.  I walked down the driveway and the mother of Emma’s friend slid out of her car.  She was a tall attractive woman with a huge smile, and we introduced each other.  By now, Coleman was screaming at the door, and she looked up and squinted to see him.  I said, “That’s Coleman – he’ll be fine in a little while, he just doesn’t want Emma to go”.  She laughed and said “I know Coleman!” and with that she turned and yelled “OLA COLEMAN!  COMO ESTA?”  I was like ok, complete loony bird, Emma get back in the house.  But in fact, she was Coleman’s Spanish teacher.  When she told me that I was stunned.   I said “He hasn’t quite mastered English yet, I can’t imagine what he is like in Spanish.”  She laughed and said he was great, all the kids were just learning hello, goodbye, good morning, good afternoon, etc.  Well, I thought, his favorite phrases from Dora the Explorer should come in handy for him there at least.

·         Over the summer the girls took an acro class at a new facility – I took Coleman to go pick them up when it ended but we arrived a few minutes early.  We watched through the glass door and could see, but not hear, some skuttlebut going on when the kids saw us.  Afterward I learned that one of the girls in the class – upon seeing Coleman through the door –exclaimed “OMG That’s Coleman! I love him!! Why is he here?  He must know someone here!  Does someone here know Coleman?!”  Abby and Emma of course stepped up and the young girl was all agog over how much she loved Coleman.  Turns out, she was one of the Fifth Grade Buddies that visited his class every week.  She had played puzzles with Coleman once a week for nearly a full school year and we never even knew her. 

My point for the stories is that there is something to be said for being in a school within your community.  Would things be the same elsewhere?  Maybe, I don’t know.  But it keeps me up at night worrying about the chance that it would be worse.  Is an out-of-district placement the better option for Coleman at this point?  We don’t know, but we do know we have to look.  It’s fair to say that the program that he is currently in is not quite the same program that we started out with.  I know the school wants this program to succeed – the Principal has been wonderful advocating and supporting the program since the beginning, when no other school in town would take it – but outside of his control, the program is no longer adequately funded/staffed to be successful.  We faced several significant issues this year as a result of this.  Most importantly is staffing – for kids like Coleman you have to follow a very specific behavior plan.  Everyone has to respond the same way.  And less is more in terms of words.  Trying to reason with Coleman by saying things like “No, we don’t hit. Hitting hurts and is not nice.  Don’t you want to be nice?” etc….seriously you may as well speak Greek to him.  Ignore and redirect.  But not everyone is trained on the plan, or the plan is not clear, or there are changes to the staff, or the class has changed in size…all need to be addressed and the program needs to be malleable to those changes.  It currently is not, and seeking /getting approvals from the new Director of Special Services are painfully slow – it’s embarrassing to the school the lack of compassion and effort on her part.  Without specific plans to improve the current program, we will likely have to forego signing the waiver and move on.  Which will be heartbreaking for all of us, most especially for Coleman who has found his place as Mayor of this small school.