Lynyrd Is At School!!!

It has been a crazy, difficult set of years making this happen, but as of last week, OCDSB has allowed Lynyrd to accompany Alex to school.

To get this done, I needed to involve our district's OCDSB trustee, OCDSB supervisors for both our area and for special needs, the head of the Special Education Advisory Committee (SEAC), the advisors for both the EA and teacher's unions, two lawyers and an education advocate.  It has been five years of fighting since the first denial floated across the table (two years before we actually received a dog).

And most of the opposition came from Learning Support Services, the division of OCDSB which is supposed to advocate for children with special needs within the school system.

This is the level of fighting required for one accommodation.  One.  There are still plenty of others required and that doesn't even begin to touch on actually teaching my child the skills and knowledge he needs and should be being taught in school.

This happened because I refused to sit down and be quiet and not make waves.  But I was also held to an impossibly high standard of documentation and behaviour.  I was well aware that any demonstration of frustration would be held against me.  I needed to maintain a cooperative attitude in the face of people who were actively putting my son's safety at risk.

The system is opaque and labyrinthine by design.  They want parents to give up, because then the board doesn't have to go on record as denying the request.  (And let me be clear, this is an administrative issue at the school board level.  Most teachers are wonderful, dedicated people who are just as frustrated with the restrictions as parents are.)

I am not the smartest person in a room, or the most charismatic.  But I will place safe bets that I am the most stubborn.  I have always refused to accept when I was out-resourced and out-matched.  It has gotten me into a lot of trouble over my lifetime, but this time it paid off.

There are other battles still to fight.   And I'll keep going with them.  But for now I'm taking a moment of celebration.

I think I've earned it.
Important news: Lynyrd has been refused access to Alex's school by OCDSB.  We are stunned by this development.  I've explained more fully in this post. If you'd like to help, you can contact your local OCDSB trustee and tell them that you support autism service dogs in school and are opposed to policies preventing them.

Lynyrd is an autism service dog and Alex is his special boy.  He was trained by National Service Dogs for two years before being assigned to our family.  Aside from being an amazingly well-trained dog, Lynyrd has also been taught to help keep Alex safe and help him stay calm.

Lynyrd is our family's second service dog.  The dogs have been provided to our family at no cost to us.  National Service Dogs does not receive government funding and relies on donations to cover the $30 000 cost to raise and train a service dog.

Dogs like Lynyrd make a huge difference in the lives of families with autism.  If you'd like to know more about service dogs, please visit the National Service Dogs website.  If you'd like to know more about how Lynyrd helps our family, we have some pictures and stories posted here talking about our adventures in the world of autism.  And if you'd like to make a difference and help families, it would be greatly appreciated if you would make a donation to National Service Dogs.

Keep reading for some photos and examples of how Lynyrd has helped our family.

Survey for service animals in classroom

The Ontario government has launched a public consultation survey for their promised policy on having service animals in classrooms.  If you'd like to support our fight to have Lynyrd admitted to OCDSB, completing the survey is a good way to do so: https://www.ontario.ca/page/consultation-service-animals-schools

As you complete it, I would ask that you keep a few things in mind.  The survey asks whether or not schools should take issues such as allergies and fear of service animals in mind.  They should, but it's also important to indicate that priority should be given to the child who needs the service animal.

We wouldn't tell a child in a wheelchair that the wheels tracking dirt into the school causes too much work for the janitorial staff or could trigger grass allergies in their classmates and thus refuse them the chair.  We wouldn't tell a child on medical oxygen that the tank is too great a fire risk for them to be in class.  In both of these cases, the increased risks are valid but understood to be less than the benefits to the child and the school overall.  Service animals fall into the same category.

There is a section at the end where you can enter your own thoughts on service animals in classrooms.  If you can, please indicate that refusing to allow willing staff to act as handlers is an act of discrimination and exclusion.

The more people who complete this survey, the better chance we have of a helpful and supportive policy being implemented Ontario-wide.

Update on Lynyrd and OCDSB

Last night I spoke with SEAC (Special Education Advisory Council) and let them know about the issues regarding our application to have Lynyrd join Alex at school as well as the problems with the OCDSB's policy on service dogs in general.

For the most part, my speech was very well received.  I saw a lot of nods and expressions of sympathy and the head of SEAC has promised to investigate more.

However, there was a rather disappointing response from one member, who made some vague comments about concerns about the policy being too broadly applied as OCDSB didn't want Emotional Support Ferrets in classrooms and saying they had to take into account fears and allergies.  He also made a comment about there not being any clear standards for service animals, ignoring the fact that their own policy lists several.

As OCDSB has rejected an application with a clear physical safety issue with an ADI-certified service dog, I do not think there is any risk that the policy for service animals is being too broadly applied.  And while I am sympathetic to those with fears or allergies, that is something the school can manage and other people's discomfort does not trump my son's physical safety as the primary priority.

I have been promised that OCDSB is reviewing their service dog policy and that I will be given the opportunity to speak with the review committee.

I'm not going to let this drop and be forgotten.

March Break with Lynyrd and Alex

One of the big benefits to having Lynyrd with us is that it's allowed us to travel more easily with Alex.  Before we had a service dog, we took a trip to Calgary for a family reunion.  Despite having lots of extended family around, we needed to bring one of our aides with us.  As you can imagine, paying for her trip, hotel, food, plus her time added a considerable price tag to our trip.

Alex loves to travel, especially on trains.  When we needed a big reward, we used day trips to Montreal on VIA. 

This March Break, Alex and his grandparents went to visit his aunts in Toronto.  He got to ride the train both ways and Lynyrd stayed with him the whole time.  When Alex was feeling bored or anxious, he would pet or hug Lynyrd.

I've found that having Lynyrd with us has made being out in public much easier.  People are more inclined to smile, and less likely to be angry if Alex isn't behaving the way they expect.  It's a big part of what makes Lynyrd an invaluable part of our family.  He makes Alex safer, not just by preventing him from bolting, but by making it less likely that someone will physically attack Alex.  (This had happened several times prior to us receiving a service dog.)

When Alex got back home, he was able to visit his favourite place: our local sports arena, and enjoy another of his favourite activities, watching the Zamboni.




Lynyrd Refused Access to OCDSB


Last week we were informed that our application for Lynyrd to join Alex at school was denied.  Here is how it played out.
 
“We don’t know where Alex is.”


Those are never words that any parent wants to hear from their child’s school.  But those are the words that I heard on October 10, 2018.  My son, Alex, who has severe autism, had left his classroom, left the school, and gotten on an OC Transpo bus.  School staff had alerted the police, OC Transpo staff and were searching the community for my son.

 
This wasn’t the first time that Alex had left his classroom or been the subject of a massive search.  Ever since he was a small child, he would bolt away from me and any other adults if something caught his attention.  His lightning quick escapes required me to hire an aide to accompany me on any errands and even so, there were a number of times that we didn’t know where he was and had to search.  Since beginning school, I can’t count the number of times that Alex has left the classroom and needed to be pursued by teachers and aides.  It is a part of his educational profile.

On October 10th, the police picked Alex up at a nearby mall as he prepared to take another bus downtown.  The school let me know that Alex had been found and asked me to come to the school right away.

As I drove to the school, my feelings were a mixture of anxiety and anticipation.  I was obviously upset about the situation but not as much as I would have been under other circumstances.  Because at the time, I was confident that we were on the cusp of a solution.  In two weeks, a trainer from National Service Dogs would come from Cambridge to Ottawa to be at Alex’s school, training them to handle his service dog, Lynyrd.  Once Lynyrd would be with Alex at school, then Alex’s ability to bolt would be greatly reduced.

Lynyrd and Alex are tethered together and if Alex leaves without an adult, then Lynyrd can be commanded to sit down and become an anchor, allowing the adult to regain control of Alex.  Since first receiving a service dog in April 2017, our family’s ability and opportunity to go out in public had dramatically increased.  We were even able to travel to Disneyworld and enjoy Alex’s delight, rather than constantly worrying about his physical safety.

It was a rare sensation for me as a parent.  To know that there was an issue but that the school and I were working cooperatively to remove the risk to Alex’s safety and give him the best opportunity for progress.

Training is cancelled.

This is why it shocked me to be notified on the day before training that the OCDSB was cancelling the training with National Service Dogs over unspecified “concerns.”

For the last four months, I have been asking what those concerns are, only to be met with silence.  OCDSB representatives have insisted the situation is under “review” without telling me what the issues are.  I have repeatedly offered to collaborate to solve whatever concerns OCDSB has and meanwhile, Alex continues to escape his classroom and school staff.

We first applied for the accommodation of having Alex’s service dog attend school in May 2017.  We were asked to apply again in September 2018 and did so immediately.  We purchased the supplies that OCDSB indicated should be available for the dog at school (a mat, a spare leash and tether, a water bowl, etc.).  We worked with the staff at the school, who were eager and welcoming of Lynyrd.

The Policy

In November 2018, as I was struggling to understand this abrupt refusal on the part of OCDSB, I discovered a policy on service dogs which they had created in November 2017, after we had initially applied.

The policy indicates that school staff will not be permitted to serve as handlers for the dog, and given that union regulations also prohibit third parties within classrooms, this effectively bars all autism service dogs from the classroom.  If this policy is the reason behind OCDSB’s inexplicable refusal, then that is implied discrimination and a human rights violation.  If this policy was created specifically to bar my son’s service dog from school, then this is targeted discrimination against my family.

To my knowledge, no other school board in Ontario prohibits staff from serving as handlers to a service dog.  On October 30th 2018, the Ontario government announced legislation requiring schools to have a policy for service dogs that is transparent to families wishing to apply, and that the requirements for a service dog must be equal to any other disability. 

If my son was in a wheelchair, OCDSB would allow an EA to push the chair.  To refuse his service dog is to exclude him from participating in school.

With the cuts to the autism program, children with autism will be returning to schools across Ontario.  I think parents in Ottawa should be aware of this discriminatory policy and of how difficult it is for our children to receive the accommodations they need.  In my case, my son had a demonstrated need for additional resources to keep him safe.  I had the cooperation of the school and a resource that could be implemented at no cost to the taxpayers or school board.  My son had escaped and been picked up by police.  And yet we are blocked and denied the permanent resources necessary for his physical safety.

This week I met with OCDSB officials who told me that the school board was denying the dog but would fund an additional EA for the remaining 4 months of the school year but would not guarantee funding for the future as they consider the issue to be temporary and fixed.  I insisted on continuing to collect data. 

The official told me that I could reapply to have Lynyrd join Alex in the fall.  They then repeated that the OCDSB was committed to prohibiting their staff from serving as handlers, guaranteeing that any future application would be rejected.
 
This is incredibly disheartening.  We are trying to determine what else we can do to overturn this OCDSB policy without threatening Alex's current supports at school. 

If you are interested in supporting Alex, you can contact me at LynyrdNSD@xdroop.com.  You can also contact your local OCDSB trustee and tell them that you support autism service dogs in school and are opposed to any policies that would prevent them.  Thank you for your support and well-wishes.

Getting Comfort Together

Yesterday, Alex had a difficult day.  He was upset with lots of verbal protesting and self-injury.  We gave him some space to try and calm down and something very wonderful happened.

He went to where Lynyrd was curled up on the couch.  Alex wrapped his arms around Lynyrd and put his head down on Lynyrd's back.  (I was watching to make sure there was no aggression.)  Lynyrd curled his head around to rest on Alex's shoulder and the two of them sat like that for quite awhile, in a dog-boy hug.

When Alex sat up, he was much calmer.  He patted Lynyrd on the head and said "Thank you, Lynyrd."

I would have loved to get a picture but I didn't want to disturb them.  It's pretty awesome that Alex sought Lynyrd out when he was upset and that Lynyrd was able to help him feel better.

That's the kind of independence that we were hoping for when we applied for a service dog.

Riding the Elevators





Alex loves elevators more than any words can describe.  Watching his face light up as the doors slide open or closed, listening to him giggle as the floor numbers change, and watching him bounce on his toes in excitement, there can be no doubt: riding an elevator is far more exciting than anyone could guess.

Lynyrd accompanies us on all the elevators and has helped to keep Alex safe.  Not everyone shares Alex's delight at an elevator ride and in the past we've had people getting upset or looking at us strangely.  Now we get a lot more smiles and nods of understanding.

Summer 2018:

Alex and Lynyrd had a great time at the Museum of Science and Technology's special exhibit, The Art of the Brick.  Alex's favourite part was the build room.


The other big highlight of the summer was a visit to Sesame Street Land and a personal visit with Elmo and Cookie Monster.  Lynyrd was a big help in keeping Alex calm and safe during the excitement of his trip.




February 2018: Our Trip To Disney

Travelling with Alex can be a complicated procedure.  He gets overwhelmed by the noises, crowds and different locations.  He gets obsessed with buttons (when he was eight, we were on a plane and he got obsessed with the "Call attendant" button, starting in the first 15 minutes of flight).  And he will dash away from us if given the opportunity.
Alex and Lynyrd ride the Monorail, Alex's favourite part of Disney.


Having Lynyrd made a big difference for our trip this time around.  With Lynyrd tethered to Alex, we could take the brief mental break to do things like figure out which gate our flight boarded at rather than having to be 100% focused on Alex at all times.

This was Alex's second trip to Disney, which meant he had some pretty distinct ideas on what he wanted to do.  On our previous trip, we averaged about 2 to 3 hours in the park before we approached meltdown levels for Alex.  This time, Alex was able to spend a substantial portion of the day (about 5 hours) at the parks, though we still took two days off during the week.

Last time, we mostly rode the monorail and Disney buses, met some princesses and other characters, and walked around the parks.  This time, we actually coaxed Alex on some rides.

Disney's Frozen Ever-After, which Alex loved and Lynyrd was not impressed by.
Lynyrd wasn't able to go on all of the rides, but he did participate in a fair number of them.  He spent most of the Frozen ride with his nose buried in my side (the black lump at the front is Lynyrd), getting frequent rewards of treats.  But it was worth it to see Alex smiling and singing along with the characters.


Waiting outside the Crystal Palace to meet the Winnie the Pooh gang.
Having Lynyrd gave us a lot more flexibility and frankly, peace of mind, than on our previous trip.  And I think Alex enjoyed it more than his first time around.  This time, he knew what to expect and it wasn't as overwhelming as our first trip.

There were still some challenges.  We didn't end up being able to use the disability pass because Alex was exhausted just from the FastPass + selections that we'd already planned.  And because we didn't stay on the resort, he wasn't able to do some of the experiences he wanted to: like Cinderella's Royal Table.  But he did join us for Mickey and Minnie's Backyard BBQ (which he bailed on the previous trip).


One of the challenges that surprised me was the number of vacation homes that would not permit a service dog to stay on premises.  A registered service dog is entitled to enter any publicly-accessible building or activity, but if someone is renting out a private home, that falls under the category of a private residence instead and they are allowed to refuse access to the dog.  We wouldn't have had this problem in a hotel, but then there would have been more of a challenge with finding appropriate relief areas.

I was pleasantly surprised by how easy it was to go across the border with Lynyrd.  A quick check of his vaccination certificates to make certain he was up to date and no further issue.  I had all sorts of paperwork ready, showing that he was trained and certified and testifying that Alex needed him, but I didn't have to show it once during the entire trip.

Alex and Lynyrd looking at the old-fashioned
traffic lights at Hollywood Studios.
The people we encountered were pleasant and understanding as well.  Many expressed interest in Lynyrd and Alex and asked questions about their partnership.  We had a few incidents where we had to remind folk that Lynyrd was working and thus couldn't be petted, but for the most part, people asked first and were fine when we said no.

The airline gave us the priority seating rows, which have a little more legroom than the standard economy options.  I'd love to be able to afford to fly first class or buy Lynyrd his own seat so that he wouldn't be squished under our legs, but he handled it like a trooper.  (Though he did have a hard time initially understanding that he wasn't going to get to sit in the seat.)

Now we're back in the cold and grey winters of Canada, which makes Lynyrd happier but the rest of us a little nostalgic for the Florida sunshine.  I think Lynyrd misses getting to work all day every day.  Hopefully, we'll be able to send him to school with Alex soon.  I think they'll both be happier when they can have the days together.

Meanwhile, we've got a bunch of new photos for our albums and some new memories to look fondly back on.  And some ideas for our next venture into the world of the Mouse.




Out to Play

Lynyrd works hard most days but he still needs some time to be a dog and chase a Frisbee.  Having him and Alex play together is an important part of their bonding process.