The end is near

Wednesday, June 27, 2012

Last week I sent a number of letters out; letters to the principal, to his teacher, to his past teachers and EA's, and everyone else that has worked with Jairus.  I sent a letter to the board as well, as I figured I needed to.

I thanked everyone profusely for everything they've done for Jairus these past 3.5 years.  There was another important group of people I needed to talk to however....

I was surprisingly nervous to go into Jairus' class today.  I had arranged it with his teacher, that I would come in and speak to the class for a few minutes.  She arranged that Jairus would go out with his EA for that time. It all went off without a hitch; Jairus had no idea we were there.  I felt strongly that Jairus' friends needed to be told that he would not be there in the fall.  Like I said in my last post, he's been part of a really amazing group of friends that I have been very thankful for.

This is what I said to them.

Hello Everyone!  Thanks for letting me come for a little visit.  I have a couple very important things I want to tell you.
Jairus has been coming to this school for 3.5 years.  Some of you might even have been in the class he started in, grade one.  And some of you might have gone on to grade two, grade three and now this grade four class with Jairus.  Well I'm going to tell you a secret.  When Mr. Kent and I decided to put Jairus in school, I was pretty scared to bring him.  I think you probably know why I was scared.  Because Jairus is different, I was scared that he would not be accepted.  I had seen before in his life, that some kids were very friendly to him....and some kids were not.
It only took a week or two for me to find out that you all were a very friendly group of kids.  I was so happy and pleased to see that you accepted Jairus.  You made all my fears go away!  And whenever I saw you guys helping Jairus and being nice to him, it just made my heart sing.  I'm not your mom, but I have been so proud of you all!  You have learned a life lesson that even alot of grown-ups have not figured out yet!  You have learned how to treat someone who is different with honour, respect and compassion.  I wish I had certificates to give you all, to show that you have learned this very important lesson; of how to love one another.  I hope that you can take that with you wherever you go for the rest of your life, because it's so important.
Now I have to tell you something confidential.  You might know what confidential means, especially if you watch spy movies.  There's always something that needs to be kept confidential in a spy movie.  It's a little bit like a secret, but something that is confidential is being kept a secret for a very important reason.  And it's not really a secret; it's just information that you need to know, but not everyone needs to know.  Kind of like your doctors records.  They are for you and your parents to see, but they are private and not everyone should be able to see them.  Or your report card.  You take that home for your parents to see, but you might not have shown your friends.  It's private.  It's confidential.
But this confidential information is only to be kept confidential from one person: Jairus.
When you come back to school in the fall, Jairus will not be there.
Now, this is to be kept confidential because if I told Jairus right now that he wasn't coming back to this school in the fall, he would be very upset.  He would be confused, and he might not understand.  Even worse, by the end of the summer, he might forget!  Then I'd have to tell him all over again, and he would get upset all over again.  I don't think there are any mommies out there that want to make their little boys upset two times for the same thing!
You all have often treated Jairus like he is your little brother.  You know why that is---because sometimes Jairus needs extra help.  And just like you are protective of your little brother, I want you to protect Jairus from being upset and confused. 
I wanted to come tell you this because you have all been such good friends to Jairus, that I didn't think it would be fair to you all if you came back in September and he just wasn't there.  I wanted you to know that when you say goodbye to him tomorrow, it will not just be for the summer.  Now, when you say goodbye, don't go overboard.  If you're all "Oooh, Jairus, I'm going to miss you sooo much", he's going to think..(funny face from me) "hmmm....somethings up".  Because Jairus might not be able to say much, but he does aloooot of thinking.  Right? (Kids nod).  
You are most welcome to stay in touch with Jairus!  I would just love that; if you wanted to send him letters or emails, call him or come for a visit.  You know he moved to a new house earlier this year; it would be great if you wanted to come out for a visit.
Tomorrow Jairus will have some cards with his name and phone number on them.  If you would like to stay in touch with Jairus, you ask him for a card.  I'm sure he'll be very happy to give you one.

His teacher added a few more comments and thanked me for coming.  I think it went fine.  I think the kids were tracking with me and were accepting of the news.  I think his teacher must have fielded a few questions after I left, because one of his best friends came to me after school and started to ask something about him doing school at home, but then Jairus came out and he had to let it drop.
I worked on this talk for a couple days and wrote it out in point form in a notebook that I brought with me and referred to.  I wanted to make sure I didn't get off on any tangents (common with me in front of a group of children).  I didn't want to get emotional and make them all uncomfortable.  I just really wanted to do right by this group of kids.  They're just a really great bunch of kids.
I nearly lost my composure when I had to tell them the 'confidential information'.  But other than just being generally wobbly of voice, I was ok.

Just one more day now.

And now a word from our sponsor.

Sunday, June 17, 2012

Taking a little break from house posts to talk about something a bit bigger right now.

Jairus.  School.  Sigh.  Yep, this right now is actually bigger than my house.

So, little recap.  Jairus is just finishing up grade four at the elementary school that was around the corner from where we used to live.  I was going to say the name of the school but suddenly I thought it might be socially unsafe to do that.  I'm not usually concerned with all that when I blog, but for some reason naming the school right out seemed like not a good idea today.
This is the close of a little over 3 years for Jairus in public school.  James and I put him into school after two years of homeschooling because we were starting to run into roadblocks in providing services for him.  For instance, CDRP (therapy services through the Chedoke campus of Hamilton health sciences) discharged him when he turned six.  They told me that 'the school board' would take care of him now.
Ahem.  I was his school board.
We looked to the CCAC (community care access centre) as recommended.  They sent out two speech-language pathologists (at my request) to assess Jairus and turned him down for speech services because he was too delayed.  Yes, you read that right; they don't provide speech therapy for delayed children.  I can't say exactly why but I can tell you what reason it feels like.  It feels like they don't want to bother giving speech therapy to children who aren't going to develop properly.  Who aren't going to become a successful, contributing member of society.  That may not be the reason.  But they never bothered to explain to me why, even after a few firmly worded letters, so I'm left with my impressions.
But back to school.
We had been using Special Services at Home money to have my moms cousin, a retired EA, come out and help me with programming and a little hands on work with Jairus in his homeschooling.  In the February of that school year, she began to suggest that we could be accessing alot more resources for him if we were in the school board.  James and I gave it some serious consideration.  Not only could we get services for him (we thought), but with three girls now coming up behind Jairus, I was finding it increasingly difficult to accomplish our homeschooling.  Jairus needed alot of one on one time.  So we put him in school.

From the first day, it was a good thing.  We put Jairus in grade one even though he was age appropriate for grade two.  They gave him an EA right away, full time.  Jairus was not toilet trained at that time so he needed that kind of assistance at school.  Having never been in an elementary school environment at 7 years old, they eased him in with half days.  By June he went full time and his wonderful EA determined to have him toilet trained by the end of the month.  She was largely successful.  I was grateful!

When he returned that fall, it was to a different EA.  I was slightly bothered to find out that he'd only have the EA part time; he'd be sharing her with another little boy.  It worked out ok though, as she was in the classroom pretty much full time, and sat between the boys to give them maximum assistance.  She was very nice and the year went well.

The next year was grade three.  He went back in the fall with a new teacher, and a new EA.  The teacher seemed great.  Full of energy and constantly positive, she would turn out to be one of the best teachers I've ever met.  The EA didn't work out so well.  He was a man (not saying that was a problem, but it was different from what we were used to) and english was not his first language.  He had a very strong accent and this I had a big problem with.  Jairus' biggest need was speech assistance.  It was clear within a few weeks that Jairus was becoming frustrated at school and acted out his frustration on the EA at one point, resulting in a 'Safe schools' report on Jairus.
Fortunately, right after this, the EA postings came out and Jairus received a new EA.  An older lady this time, with years of professional and personal experience; she had a non-verbal daughter of her own at home.  The rest of the year went great, although I was becoming increasingly concerned in the lack of time Jairus actually  got with his EA. I spoke to his teacher about it, and then contacted the Board.  After a few responses that basically put the onus back on the principal to assign EA time as needed, I spoke with the principal and she 'tweaked' his schedule.  There was some improvement as she rearranged the EA time so that Jairus didn't have so many long gaps with no assistance.
On the last day of school I learned that Jairus would be getting even less EA help in the fall, perhaps amounting to 1/2 a day, every other day.
It actually turned out to be less.
This past fall, Jairus started grade four. Before school even started I went into the school and spoke to the principal.  I wanted to find out how much EA time he'd get and a few other things, like what were they going to do about french class.  I didn't get far....the principal told me to come back in a few weeks when things were more settled, and then she'd be able to tell me how much EA time he was actually getting.  It turned out to be 1/3 of a day, every other day.  I was not impressed.
Just a little rundown here, for anyone reading who doesn't know much about Jairus.  He turned 11 this past March.  His assessments have him working at a kindergarten to grade one level.  He's considered non verbal and has perhaps a dozen words that he can say that the average person can recognize.  He uses an augmentative communication device called a Vantage where he can touch the pictures on the screen and it speaks for him.  You can read a little more about why he's like that here.

By December I had made enough fuss that a meeting was held with the Augmentative Communication team and all the school staff that dealt with Jairus.  I pulled out all of Jairus' IEP's to get an idea of what kind of progress he'd made.  I was shocked to find that his IEP's were worded exactly the same, year after year.  The only thing that changed was the percentage he was expected to accomplish the goals.  This was very discouraging. (Sidenote: I also discovered a few weeks ago that Jairus' DRA (developmental reading assessment) score is unchanged in three years).
As these meetings usually go, we left it feeling like our concerns had been discussed, but nothing was really improved.  Since no more EA time could be stretched to Jairus, instead they began sending him to two outside-of-class programs, one the KLLIC program with the Kindergarten class, the other called Class Act, administered by an EA and attended by Jairus and a few other special need children in the school.  Both were basic literacy, phonetic and speech programs that were right at Jairus' level.  The rest of his time in class however, was largely attended with no assistance.

With our impending move, I began wondering if Jairus' time at this school was going to be limited.  I was increasingly frustrated with the whole mess.  Sometime after the new year, I chose a bone and picked on it.

Jairus would bring home work all the time with his name misspelled.  Usually I ignored it, but after he misspelled his name on his Junior Soldier diploma, it started to get to me.  When I started to notice his name misspelled in a teachers' handwriting, that's when I decided something needed to be done.  It was the new kindergarten teacher---well, new to Jairus.  It was the KLLIC teacher who apparently didn't know how to spell his name.  So I sent a note in his agenda asking that all the teachers and EA's who worked with Jairus be apprised of how to spell his name. (Sidenote: this was also after seeing that his name was misspelled about 50% of the time in his IEP that year).  Frustratingly, she responded that Jairus was the one misspelling his own name and that all the teachers and EA's DID know how to spell it.  The day of that response, Jairus brought home a paper with the teachers writing on it....with his name spelled wrong.  I circled it and wrote a further note on the back and sent it in a few days later.  I ended up speaking with the teacher personally about it and she insisted that Jairus was misspelling his own name.
I was slightly stunned at misconception going on here.
I was quite aware that Jairus was the one misspelling his name.  It was his own handwriting.  What I wanted to see happen, was that when Jairus was spelling his name wrong, that someone would stop him, correct him, and help him learn how to do it right.  Was that too much to ask?
Apparently it was.  I decided to chuck the bone out the window.

Once we moved and I was driving Jairus to and from school each day, at a time usage of about 2 hours a day, the thoughts of whether we would keep him at this school became more prevalent.  I tried to limit my thoughts strictly to his academic needs (and not my need to stop doing all that driving), but as a good friend pointed out, if I felt that school was really a helpful place for him, driving him would not be a problem.  After all, I had driven him to and from Toronto for 30 days late last year for his Tomatis training because I felt it would be a tremendous benefit for him.

To help in this decision, I sent the girls to my parents for a day and shadowed Jairus around school.  I won't make this post any longer with the details of my observations, but the bottom line was that Jairus was not getting enough help.  Not enough EA time.  Not enough speech help.  The one shining positive about Jairus going to school was that his classmates were wonderful friends who would jump at the chance to help Jairus every day.  Was that enough?

James and I prayed and wrestled with the issue.  I begged God to show me what we should do.  I talked with his classroom teacher.  I spoke with the principal.  Slowly, a picture was emerging.  And it did not appear to involve public elementary school.  But I needed to keep searching....

I met with my moms cousin once more, and a colleague of hers in special ed.  I went out to the Gregory school for exceptional students and considered their private and expensive program.  I spoke with a friend of a church friend who runs an enriched kindergarten program and tutoring/therapy clinic.  I asked advice from a gymnastics mom (whose daughter trains with Verity) who is a Learning resource teacher in another board. I sent a letter to a Board of Ed trustee who in turn also contacted the Principle of Special Education.  We chatted.  I spoke with the principal of the school closest to us in the new board.  They put me in touch with the Special Ed teacher consultant.  I visited the developmentally delayed class for our new board.

Over and over I kept hearing the same excuses: EA's are allotted to the schools based on the needs of all the special ed students, then the school divies up the EA's as they see fit.  Therefore the board was absolved of responsibility here for Jairus not getting enough help.  The school insisted that they weren't getting enough EA's and that they needed to give them to students that were in physical need, or a danger to themselves or others.  Non verbal and working at half his age level was apparently not important enough.  The school therefore has their hands tied.  Speech services were again denied through the school (administered by the CCAC....not them again...) because of his delays.  The augmentative communication team provided resources for the teacher...but nothing for Jairus, not even of a consultative nature.  We could bring our own private speech therapist in, sure.  For twice the cost of a usual session as we pay for her travel and extra time.  For sure we can do that.

Bit by bit the picture was coming clearer, like a photo being swished through the developing solution....

Then last Tuesday after speaking to the principal of Special Ed,  I held the picture up to the light and guess what I saw?

My little boy, at home with his mama, and his three sisters.  And I sighed with relief.

That's right, come fall, Kent Academy welcomes its original member back where he belongs.

Welcome home son. We sure have missed you.