Life On The B Side

Taking all that life throws at us one moment at a time

The Knowing September 13, 2019

I recently came across something I had written (but never posted) on August 7, 2018.

 

 

Therapist:  So, what brings you here today?

Me:  I don’t know.  I just feel overwhelmed.  With my life.

 

That was how my very first therapy session started.  It was the spring of 2013.

At the time, I had a job that I wasn’t happy at.  Pretty much no money.  A 7 year old with not-yet-diagnosed ADHD, who was struggling in school.  A 6 year old, whose autism had a chokehold on the entire house.  The relationships with my husband, father, mother and grandfather varied from shitty to non-existent.  I had curled inward; away from my friends.

I felt very alone.  I was a mess.  Drowning.  And I saw no way out.  I didn’t go to therapy thinking there was anything they could do or say to “fix” my life.  I mean really.  What could they do about any of the things I was anxious about or overwhelmed by?  But what other choice did I have?  I had to try something.

 

I ended up going to 5 sessions.   It helped, but not in the way I think most people go to therapy expecting it to.  My therapist helped me to simplify and organize my thoughts.  It was a relief to say some things out loud that I’d been guarding tightly.  Ultimately, we decided that my life boiled down to 2 things.

  1. Sometimes things suck and you just have to get to a place where you accept that they suck and you have to stop looking for/hoping for/expecting different. Just accept.
  2. Some things – like your job and your marriage – can change, but they won’t change (for good or bad) on their own. You play an active role in what you allow. How much are you willing to tolerate before you make steps towards making that change?

 

 

August 2018.

Shaunie (my wife):  What’s wrong?  You got quiet.

Me:  I’m just in a funk.

 

How do I explain it to her?  She’s a “fixer”.  But there’s no easy fix when depression creeps in.  You know all the things.

You know it could be worse; there are people who love you; you have lots of reasons to be happy and grateful.

You know that if you ask her to do something specific she will make it happen.  It’s who she is.

You also know that she’s dealing with her own schtuff and the last thing she needs is you adding to her plate a bunch of “to-do’s” that will ease you to some extent but won’t magically “un-funk” you so there’s no point in putting her through that.

Everything feels like a huge problem and like it will take energy I don’t have.  The house needs tidying up.  I feel fat.  I look old.  I have to renew my license.  The kids need new passports.  I need to catch up on over 200 work emails.  I have a phone call to a sick friend I’m supposed to make.  I need to make arrangements with the kids dad for him to see them again before the summer is out.  I got an email saying my credit score had dropped.  I always have another dentist appointment I need to schedule.   And I always know that the next one won’t be the last one.  I am SO OVER THE DENTIST.

No, I don’t want tea or to laugh or sex.  I just want to curl up in bed.  It’s all I can manage.  That’s what feels easy.  Doable.

We cuddle and I fall asleep.

It’s a sweet relief.  From life.

But now it’s the next day and I can’t stay in bed.  I have to shower and go to work and make phone calls and wash dishes and hang back up the picture that fell off the wall.

 

I think back to my therapy sessions.

What can I control?  What do I have to let go of?  What feeling is weighing me down that I need to just accept/let go off, instead of trying to make it be different?  One thing at a time – The tension in my brain starts to unwind.

 

Ace starts 7th grade soon.  It comes with certain stresses, but, in quiet honest moments, I am not too worried about that.  It’s his second year of middle school and last year went pretty well.  He has a cell phone now, thanks to his Grandma, so I’ll have to figure out some rules around his use of it as well as install some parental controls; but that’s stuff we can manage.

Jay.

This one is a little harder.

My heart constricted a little when I typed his name.  For the last couple of years, I had not fretted about the start of the new school year.  But he’s going into 5th grade which will be his last year of elementary school.  I cannot handle the thought of him leaving that environment.  Elementary school had begun to feel safe for him.  Comfortable.  Predictable in its own way; even as we moved up the grades.  His teachers, the mostly innocent and friendly and understanding kids, the routine.  The special education team was always the same at IEP meetings etc.  Middle school will be different.  There will be a totally different set of students as none of his current friends will attend the same middle school as him.  A different school staff who don’t know and love him – yet.  A vastly different daily routine.  Different expectations.

“Different” with Jay is scary.

 

BUT, I can’t control these things – And certainly not now.  Why am I already stressing about next year?  I don’t know.  Ask my old friend anxiety.

 

Things will settle down soon enough I reassure myself.  I will get over these feelings eventually OR we will address the things that need addressing – Which will serve to calm me down.  I KNOW this.  I know this because I’ve been down this road before.  More than once.

And in this case, today, the knowing is the force holding me together.  It is my life jacket.

 

 

To Be Continued ………….

 

DON’T POISON YOUR KIDS TO “CURE” THEM OF AUTISM. April 30, 2019

Because Apparently THIS Needs To Be Said.

 

I know I said I wasn’t going to be posting here that much anymore but then I got a message from someone I knew in high school and … well, here we are.

 

In the initial message this former classmate of mine tells me that his son has autism and he’s been researching autism reversal through diet and detox.

I see the words REVERSAL and DETOX and every alarm bell in my body goes off. I don’t want to be rude though and I really don’t want to get into an argument so I kindly respond that based on what he has said, we are not on the same page regarding our ideas about autism so basically let’s just agree to disagree and keep it moving.

 

He felt the need though to respond with a You Tube link that was supposed to convince me that biofilms were the cause of my kids problems and detoxing him using BLEACH either orally or as an enema would cure him.

 

FFS!!!!

 

Anyway, I’m still trying not to be rude at this point so I send a very quipped response to let him know that I am already familiar with the person in the video and I think what they promote is dangerous.  The end.

Did he reply yet again?  Yup, sure did to say that while not all people will have their autism reversed, it has been shown to work on some and improved the quality of life of many others. He tells me his son has gastrointestinal issues and he thinks it’s related to the autism and it’s possible this detox would fix it all.

 

This is where I kind of lose it and go off. Not in a rude way, but in a lengthy way.

I let him know in no uncertain terms that people like the woman in the video he sent me are evil and they prey on an already vulnerable section of the population who are so desperate for help they will try things that are actually abusive. That makes them the worst of the worst in my book.

I give him some actual trustworthy information about autistic people. I tell him that there are a number of disorders or diagnoses that co-occur in autism at higher than expected rates. I tell him that these coexisting conditions may either be treatable in their own right or may influence the long-term outcome for the person. I stressed to him that when there is a focus on the diagnosis of autism, it is possible to neglect other diagnosable/treatable conditions and that this happens at a higher rate than we probably realize.

I encouraged him to get additional testing if he’s concerned about his sons medical condition – SEPARATE FROM THE AUTISM.

I laid out my case for why medication or taking any supplements or restricting a diet should be carefully planned for and thought out and supervised by a real doctor who is up to date on real science; not some quack who stumbled upon a get rich scam while touring the jungles of South America.  Not by some quack who in more than one country has an arrest warrant out for him, regarding the poisoning and DEATH of several people. Not some quack who would have you bleach enema your child to the point where your child could need a colostomy bag. Not some quack who tells you that the nausea, vomiting, diarrhea, liver failure and severe kidney damage caused by his proposed treatment are proof that the solution they are selling you is working.

 

It’s been a few days since this interaction and I still am quite shaken by it; mostly because I feel bad for the poor kid.  I totally understand why some parents get desperate.  I know it can be hard.  But no matter how hard it is for the parents, it’s still our job to protect our kids and not to make things even worse for them.

There is no quick, easy, fix. There is no cure. There is only, get your child the help they need to be their best; physically, academically and emotionally.  There is do the best you can to provide your child with a good quality of life in whatever way you can.

There is so much good research out there. There are so many therapy options and communication techniques available that are worth paying attention to. What works for one person won’t work for another so I am not here to tell people to follow the path we have followed but I can say with certainty that poisoning the autism out of your child is NOT the way.

 

 

 

Oh, and no, after I sent that last message, I haven’t heard back from him.

 

The School Choir December 10, 2018

Jay decided at the beginning of the school year that he wanted to join his schools choir. This came as a surprise because a) he’s never really shown any great interest in singing b) he’s never shown any great interest in any kind of performing c) he comes from a long line of people with horrible singing voices (his mom included).

I am not one to discourage my childrens extracurricular interests though so I filled out the paperwork and every Tuesday morning, before classes started, he would go to rehearsal.

 

About a month ago he began saying he wanted to quit. He just didn’t like it, he said at first. Then I found out he was getting anxious about the upcoming shows. He dreaded getting up on stage and singing in front of a crowd. But as much as Shaunie likes to paint me as the “easy” parent and as much as I try to lean into the boys emotions and I tell them that their feelings are valid and their desires have a right to be acknowledged and taken into account, I made him stick it out. I was not comfortable with him quitting mid-season. He had made a commitment and needed to see it through. His teacher and the rest of the students in the choir had put in a lot of effort during their many hours of practice and they were depending on him (on each of them) to do their part and show up for the team. I told him that all the kids were probably nervous but they would get through it together. I asked him what would happen if they all decided now that they didn’t want to do the shows because they had stage fright. Plus, it wasn’t like he had to do a solo … Remember what I said about the families singing talents?

Ace encouraged him saying he too had been in his schools choir in the 5th grade and he too had been nervous but that in the end it was fun. Jay liked hearing that his older brother had experienced the same thing. It gave him some relief.

Still, he moaned and groaned and asked us NOT to come see him perfom and lost the check needed to buy his uniform shirt and then lost the shirt itself once the payment situation was sorted so we had to borrow one but …

 

They did their first show last week and it was really great. He smiled for pictures and waved at us in the audience.

 

I was so proud of him – and all the kids really.

I even appreciated that the songs were so diverse.  They did Christmas songs and a Hanukkah song and even an old negro spiritual which didn’t sound very “old negro spiritually” coming from a bunch of elemetary school kids but still.  It was delightful.

 

They have 3 more shows at the school this week and then a field trip to perform off-site next week. He hasn’t raised any concerns about those so I guess getting that first show out of the way was all he needed.

 

They start a new season in January and I’m not sure if he will sign up again – I won’t force him if he doesn’t want to. Either way, I will consider this experience a success.

 

It’s Been A While – A Meltdown Story December 4, 2018

Sometimes an old emotion that you had packed away neatly finds its way out of the dusty bin and settles once again in your heart. When that happens, it doesn’t feel like a long-lost friend. It feels like an intruder; one you don’t care for but have to accommodate nonetheless. It’s an intruder that you know well, so even though you don’t want them there, you don’t freak out when they show up, you just do what needs to be done so they can be sent away again.

 

The morning started off like most other mornings. Alarms go off. People get themselves ready for the day. For some it’s school; others work. There’s a little chit-chat. Well, less “chit-chat” and more “requests” – Can I have money for the book fair? Do I really need to go to choir practice? Can you make me some tea please? Can I sit in the front seat?

No. Yes. No and no.

 

Things took a turn when Jay and I got to the door of his school and he realized he had left his glasses at home. For the first time in a long time I saw the swirling torrent of a melt-down heading our way. I tried to get ahead of it. I spoke calmly. I offered to bring his glasses for him at lunch time. He would not hear any of it. His mind had already gone to a place that blocks out reason. A before-care staff member came and tried to assist. At this point we are blocking the door. Through stiff, clipped words and with his entire body shaking, Jay told him that he couldn’t go inside because the other kids would make fun of him. (I’m not sure why he thought that). The staff member said all the right things. “I’m sure that won’t happen. But if it does, you come to me and I’ll deal with it.” None of that appeared to register with Jay.

Just then, a teacher, who I didn’t know, but who obviously knew Jay came in. She suggested that he go to see Ms F and take a minute in her room to calm himself. (Ms F is the autism resource teacher who was our lifeline during his transition to this school 3 years ago and who Jay loves but no longer really gets to spend much time with since he’s fully mainstreamed now).

The teacher sent me on my way, told me that everything would be fine and assured me that they would call if necessary.

 

We hadn’t had a school drop off like that in YEARS. I got to work still a little raw from it. Mostly I was worried that this rough start to the day would mean a rough ALL DAY for Jay and by extension, all the other students and teachers he had to interact with. Throughout the day, I kept expecting my phone to ring.

Nothing.

I didn’t have much appetite and it took a lot of energy to focus on my actual work.

When I picked him up, he came bounding up to me with a big smile. I asked him how his day had been and he said it was great. Gingerly, I asked him about the morning. Specifically, I asked him what happened when he went to Ms F’s classroom.

 

I don’t know how they do it, but special education teachers are magical. At least, the ones we’ve had. I cannot overstate how much they have taught me or how much I respect them.

Ms F apparently gave him a quiet spot to sit for a minute. Then she asked him what was making him so upset. Then she took her glasses off and put them in a bag and told him that they would be the “no glasses for a day” team.

That’s all it took. He went to his own class and proceeded to have a great day.

 

Where earlier my heart had been full of worry; in that moment, it was full of wonder and appreciation.

 

Goodbye old companion – All day anxiety caused by meltdowns.  Your visit was short and not sweet. This wasn’t even a bad storm.  A drizzle really.  But man, it’s in these moments that I am forced to remember and truly appreciate just how far we are now from the years when meltdown hurricanes were a nearly daily occurrence.

 

Team Growth February 27, 2017

On Saturday evening we were trying to decide whether to go to the 9 am Church service the next day or the 11 am one.  We’re not really the best at being morning people so 11am would suit us better in terms of waking up and getting ready but if we go at 9 am then the kids can go to Sunday school whereas if we go to 11am they have to sit with us in the sanctuary.

Decisions Decisions.

For me it’s a no-brainer and the extra sleep wins.  I voted for 11am because as I put it “The kids will be fine.  They did a good job last time.”

Shaunie had a different take.  According to her I frame everything around how much better they are now than they used to be.  So basically, even though we sit in the back just in case we need to leave during the service and we bring snacks and we threaten to take away electronics if they don’t behave and we spend about half of the time shhh’ing them, I count it as a win because we make it through without any yelling or crying – which was not always the case.

She feels like they still have a little way to go and are better off hanging out with the  other kids in a different room.

 

We ended up going to the 11am service.  We made sure the boys were well fed before we left home.  We gave the behavior speech.  We let them bring toys.  I packed snacks in my bag.  We sat in the back.

 

For a long time I avoided going to Church altogether with the kids because it was just too much to handle.  Due to their disorders, (ADHD and Autism if you are new here), I could NOT leave them in Sunday School while I sat quietly in a different room.  I also could NOT bring them to the main service with me because they could NOT sit still or be quiet.

Making it through a Church service has not been an easy road for us.  We’ve had to leave after only being there for 10 minutes.  I have been known to leave Church services in tears.  We’ve been given plenty of mean looks.  I’ve had my kids crawl under pews and between peoples legs.  They’ve dipped their hands into the wine cup during communion.  They’ve gotten into arguments with other kids in the Sunday school room.

Yesterday, Ace only dropped one Lego piece which had to be retrieved from the floor two pews in front of us.  Jay excitedly waved his $1 in the air that he puts in the offering plate but so what?  Only one time did Ace ask, “How much longer?”  Jay ate Oreos.  They both shook hands during the greeting of the peace and before you know it, we were on our way home.

 

I think everyone would agree that it was a successful outing.

These things don’t happen by accident.  They happen because you keep pushing yourself.  You keep trying.  You keep growing and getting better – Sometimes very slowly.  You fail a few times (or most of the time) but you go back anyway.

 

There’s debate in school administration over whether to rate students based on their growth in an area or their proficiency on the topics.  I suppose it’s safe to say I am #TeamGrowth.

Proficiency, of course, is the goal, but we’ve got to recognize and celebrate every little bit of growth and use that growth as motivation to keep pushing us forward.

 

When You Write A Thank You E-Mail To An Author And He Writes Back January 13, 2017

bad-kitty

 

I am a fan of words and of people who can put words together in a meaningful or creative way.  I love a good song writer, essayist or novelist.  I also feel like it’s nice to give compliments when deserved.  I’ve been known to yell out my car window at a lady walking down the street to let her know that I like her hair.

Recently, I sent an email to the author of the Bad Kitty books; Nick Breul.  I didn’t want anything from him.  I just wanted him to know that we are fans of his work.  We being, Jay.

A part of my email said:

 

My 9 year old son Jay is autistic and while he is not on the more severe end of the spectrum, reading has never come easy or been fun for him.  A few months ago he was introduced to one of the Bad Kitty books and for some reason I am yet to understand, he fell in love with it.  He actually read it – And understood it – And laughed at the appropriate points.

 

Well, Nick – I feel like I can call him Nick – wrote me back in less than 24 hours and was most gracious in his thanks.  Not only did I think it was totally cool of him to reply, he also provided some insight which I found intriguing so I figured I’d share it here.  A snipet of his response to me follows:

 

A few years ago, I started receiving plenty of letters from parents and teachers like you with autistic children.  I was receiving so many that I asked them to tell ME why they thought the books were so popular with their kids.  Here were the two common factors…

  1. The kids really responded to Kitty’s facial expressions. Kitty’s expressions are extreme, black and white, and static on the page, the response seems to be hilarious.

2. Kids kept telling their parents that Kitty herself has autism. … This made sense to me.  Kitty does not like change.  She does not relish the company of other cats or Uncle Murray.  But she does manage to reluctantly integrate herself into her environment when necessary

 

The only thing I have been able to get out of Jay as to why HE loves Bad Kitty so much, is that “she is funny“.  I can’t help but think now though – after getting Nicks email – that he finds her funny because he sees himself in her somehow.  He can relate to her and her quirks and her feelings.  That’s pretty darn awesome.  I could write an entire post on how important I think it is that people see themselves represented on TV and in books and in their everyday lives.

 

I don’t know if you are familiar with Kitty or not, and I am not being paid to say any good things about the books, but if you have a kiddo who is on the spectrum and who may not be a big fan of reading, you should give Bad Kitty a try.  She’s even funny to neuro-typical people as our tutor discovered when she spent some time reading with Jay this week.

 

 

 

The Honour Of My Life January 9, 2017

Filed under: ADHD,Autism,autism mom,Family,Life on the Jay train,Special Needs Kids — The B Side @ 1:00 pm
Tags: ,

Jay has been counting down to his birthday since the day after Christmas.  Finally, it’s tomorrow.  Naturally, because of the mush that I am., I am spending today deep in my feelings.

In both good and bad ways, nothing in my life has affected me and the way I think or operate the way being this childs mother has.

It has been the hardest thing I have ever had to do.  Often, alone.  I have been tested, stressed out, overwhelmed and brought to tears more by being his mother than by anything else in my life.  I have felt proud,  humble, excited and grateful more by being his mother than by being anything to anyone else in my life.

I couldn’t have seen it a few years ago, but I know now that it is the ultimate and most awesome responsibility to raise Jay.  It has been an unspeakable joy and a privilege to have a front row seat to his hard work and determination and to witness his personality unfold.

This parenthood journey has taught me more than I ever imagined I could learn – Both about myself and about other people.  I am more compassionate to and understanding of others.  I am more appreciative of every little thing.  I appreciate every time he takes my hand and kisses the back of it.  Every time he masters a new task.  Every time he finds joy in a new interest.  Every time he explains why he’s upset.  Every time he volunteers to help.  Every time he snuggles up in bed and tells me good night and he’ll see me in the morning.

 

Gone is the anxiety that used to have a choke hold on him, and by extension, on us.  Gone is the constant worry over how he will get through each day.  Each event.  Each moment.  Gone is the paralyzing fear that he will be bullied or taken advantage of or abused.  Gone is the stress of wondering when my phone will ring, with someone asking me to come pick him up from school/after-care/camp.  Gone are the sleepless nights as I lay awake wondering what his future looks like.

He is still autistic.  I am not taking that away from him.  He still scripts.   Just last night he was trying to tell me that he didn’t want to do something and he said “We just don’t have the funds for that.”  He still perseverates and still has a limited diet and has many other struggles.  I still don’t know what his future looks like.  But it’s not for me to know or worry about.  What I do know is that I trust his ability to take part in the world in his own special and unique and fulfilling way.  I can honestly say, I have come to love the way his brain works.  It is a marvel.  I would do anything to help him get through the hard days and to make sense of the confusing information.  But oh my gosh, I would not trade this child or the things we have learned or the people who have been there for us, for anything in the world.

 

The goody bags are packed.  His birthday hat (which this year is actually a crown) is waiting in the wings.  The cupcakes for his class party have been ordered.

After school tomorrow he wants to go to Chick-Fil-A for dinner.

 

My baby turns 9 years old tomorrow.  What a journey it’s been.

What a blessing he has been to me.  Being his mother used to feel like a job.  It used to feel like I had been dealt an unfair hand.  Now, without a doubt, I feel like it is an absolute HONOUR and it couldn’t be more of a pleasure.  

 

I love you son.  So much!  Happy Birthday!  And before you even ask, yes, you can get ice-cream tomorrow.

 

 

 

 

 

Progress Report and Superflex November 16, 2016

Filed under: ADHD,Autism,autism mom,Family,Uncategorized — The B Side @ 2:54 pm
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At Jay’s progress review meeting with his speech therapist she told us about a program they had been using lately.  Immediately we became alarmed; and some of the odd things we had been seeing at home began to take shape and make sense.

 

Before I wrote this post, I looked up reviews for the Superflex system.  I thought for sure that my son wasn’t the only one who had problems with it.

All the reviews were good … until I posted mine.  I don’t often write up online reviews, but I feel really strongly about this product and I think that other parents need to be aware of it so they can make informed decisions and possibly speak to their child(ren)s teachers/therapists.

This is a program that markets itself as:

A Superhero Social Thinking Curriculum which provides educators, parents and therapists fun and motivating ways to teach students with social and communication difficulties .

 

It sounds great.  There certainly is a need for such a curriculum.  The main thing that characterizes autism is that it’s a social and communication disorder.  Our lovies (often) struggle with picking up on body language, innuendo, sarcasm, teasing and other subtleties.  They tend to do well with facts and lists and order and black and white.  No grey areas.  They are not usually the best at make believe or abstract concepts.

 

This is why it baffles me that the creators would choose a Superhero who “takes over your brain” as their base for teaching.  In the program there are things (people?) called “unthinkables” who get into the brain and make you do bad things; such as over-react to what is really just a small inconvenience.

 

Jay thought these unthinkables were real.  Think about that for a second.  It’s Scary!!!

Lately we had noticed him talking to himself and actually arguing with himself.

There were times we saw him hitting himself in the head; as if trying to get the bad things out.

 

Needless to say we asked the therapist to cease and desist with that program and that line of language.  I followed up with an email.  She was very receptive to our concerns and assured us that she would take heed.  In her own words,  “I will take the ideas/strategies and modify the presentation so it has nothing to do with the cartoon characters in the program.  We will omit the notion of something taking over your brain.”

 

Maybe in this case, I am the one over-reacting.  Maybe the program is great and maybe Jay would have eventually done really well with it.  I’m not willing to take the chance.  The last thing I want is my baby boy to think there is something wrong with his brain or some “bad guy” in his head.  That makes my brain go to dangerous places.  In the worst of scenarios, he tries to do something harmful to himself to get the bad guys out.

No thanks!!!

 

 

*Ed Note:  After publishing this I found out that this program was used with Ace also when he was getting OT.  He thought it was great and really responded to it.  I say that to say: I can see how it would be good for someone like Ace.  He loves all things super hero and any time you can make something educational into fun, he stands a better chance at picking it up.

I am not saying the program has NO use.  I am just saying that it should be approached with caution if it is being used with students who have very literal thinking and may have a hard time separating facts from fiction.

 

Respectfully Eligible June 6, 2016

Every 3 years Jay gets re-evaluated by the school district to make sure that he still fits the criteria to be on the autism spectrum and is still therefore eligible for special education services.  He was due as of June 2016.  I am happy that his re-evaluation due date came up after he began at his new school and wasn’t done in NJ before we moved.

The evaluation done by this new school district was very comprehensive and we had a meeting this morning to go over their results.  I had been given a copy of all the reports prior to the meeting.  There were reports from the school psychologist, the educational diagnostician, the speech language pathologist, his resource room (autism room) teacher and his general education classroom teacher.  All were in attendance along with the school Vice Principal.

No-one was surprised that he does still meet the criteria for eligibility and all agree that in 3rd grade he will continue to be in a general education setting with an aide.

I’m not going to go over the details of each report or all that we talked about but there is one main thing that I want to make note of.

 

I was struck by the respect with which everyone spoke about Jay.  

 

Yes they had to give him certain tests and they had to assign number scores to him – not all of which were great – BUT in multiple different ways and at multiple different times each person in attendance talked about how they know and made sure to document that test results do not accurately reflect HIM.  They talked about his sense of humour and his smile.  They said they are learning from him as much as he is learning from them.  They had a full page showing his areas of strength that cannot be tabulated or tracked through testing.  They talked about him teaching other students a different way to tackle a math problem when he saw that they were not picking up the material.

His classroom teacher said that when he’s been working diligently on something for a while and then starts to get uncooperative and demands his book* she knows that what he’s really saying is “Ms C, I need a break.”  She recognizes that his behaviour IS communication.  It’s not just something to be curved or corrected.

Respect.

 

They marveled at his drawing and his penmanship and memory and executive functioning (planning) skills.

 

They listened to me.

The vice principal said “We love when parents write a lot in the ‘parents input’ section. After all you are the expert on your child.”

 

Each person had at least one funny or sweet story to share about an interaction they had personally had with him or witnessed.

 

They told me that a spot was open at Ace’s school for September but it would be my decision if I pulled him out of this school and sent him there or not.  They spoke very highly of that schools special education program but made it very clear that they have come to love him and would be happy if we decided to leave him there.  They tried to sweeten the pot by telling me about the gardening club they have for 3rd and 4th graders.  They know him.  He’s a gardening club kinda kid.

 

Overall, I left that meeting feeling good about my boy and his placement and his support.  He is getting everything he needs to be as successful as he can be.  They said things like “even though he doesn’t appear to be paying attention we know better” and “as members of team Jay …”.

 

I once used to dread meetings like this one.  They used to leave me feeling sad.  It was all … “below average, significant delay, oppositional, area of weakness, tantrum, become frustrated, 1st percentile“.

Some of those words are still in the reports, but also there now are … “Jays interests, readily complied, requires minimal assistance, area of strength, has formed relationship with peers, smart, delightful“.

 

This boy of mine is making so much good progress.  It’s not an easy road.  We are already talking about middle school and making sure he’s ready and what puberty may or may not bring.  It’s a little scary.  But I do believe that everyone involved is fully invested in helping him and we’ll get through it.  There’s one more week of school and then it’s summer break (and summer camp) then third freaking grade.

 

 

 

 

*His book is a teacher made stack of white papers stapled together that he gets to draw pictures in.  It helps him to regulate when he’s overstimulated.  It’s also used as a treat/motivator to get him to complete less preferred activities/assignments.

 

p.s.  People often ask if Jay is high or low functioning.  It’s a question that I hate because there’s no easy way to answer.  Autism is not a black and white type of disorder.  In some ways he’s considered high functioning and in others he’s considered moderately impacted.  In others still he can probably be considered severe.  On his test results his scores swung widely; often in ways that didn’t really make sense. He actually scored higher than average in some “areas of weakness” and then abysmally in some of his “known areas of strength”.  So in short, the answer to that question is … It depends on what aspect of his life you’re asking about specifically and also what other factors are affecting his mood at any given time.

 

The Corner Store February 5, 2016

JAY WENT TO THE STORE BY HIMSELF!!!

 

Well, that may be a little bit overly dramatic.  Let’s break it down and see.

 

After school the other day he did ask for some cheese balls.

And I did agree to getting him some cheese balls.

And we did pull up in front of a local corner store.

And I did hand him a dollar and suggest that he and Ace go into the store together while I sit in the car and wait for them.

Ace did say he was too comfy and didn’t really feel like going into the store.

Jay did say “It’s ok.  I’ll go by myself.”

My heart did beat a little faster and I did keep my eyes glued to the door and I was unbuckled in case I needed to make a quick exit and ….

Jay did go into the store, by himself, and then emerge a couple of minutes later holding a small black plastic bag and sporting a huge smile on his face.

When he got back into the car he said, “They didn’t have any cheese balls so I got 2 bags of Doritos.  It was still just $1.”

 

I don’t know what communication transpired between Jay and the store clerk but whatever it was, it got the job done.

Ace told Jay that he was proud of him for making his purchase on his own; to which Jay replied very nonchalantly, “Yeah, when I was a baby I couldn’t do that but now I can.  That’s how it is.”

 

So there you have it folks!  My boy is slowly but surely finding his legs and I couldn’t be more proud.  Even though the perception of what actually took place when I say “Jay went to the store by himself” may be a bit of an exaggeration, I like the sound of it and it’s not a lie.