Tag: parenting decision

Fighting the dragon: Autism & the school system

Posted on by laughloveandlife


As we are coming closer and closer to the school year, I am starting the cringe with the notion that here begins the fight with the Toronto District School Board to get the much-needed support for our son and others like him at our school. As we left the school in June, we were informed that while our school is considered a “hotspot” for Special Needs and recognized that there is a significant number of kids who require help to support them in school, we have thus far been allocated .5 of a position (for reference that is a 1 part-time position)..we apparently need at least 2.5 positions to cover the needs of the children.

We promptly did what many suggested and started writing letter (s) in Late June (combined with the parents of the other little guy that shared the SNA (Special Needs Assistant) with us last year). We sent it to the school trustee, superintendent, supervising principal and our MPP. We received 1 response (which we appreciated) from the superintendent, indicating that everyone was on holidays until the 20th of August and we would potentially meet then to discuss.

We have followed up but without any response to date.

I know, everyone in Toronto seems to be in a tizzy about the teacher contract agreement and what is about to happen with them. Ask any special needs parent what they think of hearing the trials and tribulations of teachers who live in such an unrealistic world of expectations on job security, pensions, and time off when it comes to hearing that your child won’t have any help this year and it’s sometimes hard to be sympathetic. I’m not saying that it’s the teachers who are responsible for the lack of resources available but I do feel that the Behemoth that is the TDSB and the way they have negotiated some terms in regards to union agreements have made it near to impossible to address the resources required in supporting the growing epidemic of Autism and children’s needs in the school system. 1 in 88 children or 1 in 54 boys now has autism. Can you truly say that your school system has changed their budgets in any way to assist that number?

Original source: http://www.churchstoke.powys.sch.uk/pages/viewPage.html?page=2071

I hate that this is going to be a fight. At one point during the summer as I was learning more and more about the lack of resources available, I even considered what it would take to become Catholic? (Trust me..I wouldn’t fit in..) Where would we have to move to access appropriate resources for T at school? Does it really have to get to that?

Parents we talk to who have kids on the other side of school (now adults and experiencing different challenges) suggest looking at it as a journey instead of a battle. I very much DO look at Autism as an adventure when it comes to the experiences T has brought us. We have learned to be more patient, appreciative, creative and grateful parents and I love how our family works.

They also say:

Fight…Don’t Give UP…YOU are the advocate for your child…YOU are responsible for getting him the best care possible. 

OK…I’m suiting up…ready to take on the fire-breathing dragon….

For reference on the most recent Special Needs Report on the TDSB Click here 

A much needed TIME OUT to keep in the game

Posted on by laughloveandlife

Let’s be honest. June knocked the wind out of my sails.

My resolve got knocked down, my heart ached, my dukes down in the fight. This is how it started…

Part 1: An autism conference where I realized how still very far away they are from really understanding Autism, how to treat it, and really concrete ideas on managing through it. But I also felt like my heart had been given hope and crushed at the same time as we learned more about  just how much of a fight this will be in T’s growing up..Abundantly clear thanks to an endearing dialogue between The Thomas’ a mother, Sandy and her 22-year-old son, Dylan as they candidly talked about their perspectives on what it was like growing up with Autism. Bottom line..”it will break your heart, it won’t be easy, but you’ll get through…”

Part 2: A series of “showcased” events (School dance, year-end shows, school field trip) in which it became fairly obvious that people I assumed “got it” were not exactly sure how to treat or address Autism as a normal part of daily life. One instance was the school trip in which I got the impression they thought T would  “dart” …we were on a farm..I volunteered that day but instead of including the two ASD kids in with the regular group and asking us to be active observers, we were kept separate along with the other Autistic boy in class and his mother, keeping the most important challenge of Autism, socialization the missing link on that adventure. Another moment was when he was set to the side at the dance,  that “joining in” to the rest of his class would get him too excited.  The last at a year-end recital for dance (we do Tap with him cause he loves the impact), I couldn’t help but cry because he was actually doing the routine (slower-about a 5 second delay) but he was doing it, and enjoying it and we were so friggin proud! and then…he just checked out…went off to his own planet halfway into the second routine and I started crying for a different reason…I was crying because I just wanted him to come back.. to be part of the moment…to be proud of what he accomplished…to be there.

Part 3: Where we are told that the Toronto District School Board does not have enough funding to provide an SNA (Special Needs Assistant) for T (and many others) next year and that we now need to fight our way up the ladder, become the squeaky wheel, do whatever is necessary to try to facilitate support for our son in the school system.

Part 4: Friends started asking how it was going, how T was doing, how our family was doing. I struggle often talking about Autism (except ironically online) because I don’t want it to consume our life. I don’t want it to be the only thing people think of when they look at T and yet, I want it to be a comfortable piece of conversation that is shared between our friends and family. I started to say something but couldn’t get the words out without that evil lump in my throat showing up. I’m not exactly sure why I started sobbing except that my energy felt it had hit an exhaustion point and my  heart-felt that it was physically aching. I said I was worried. That I felt like I wasn’t sure we were doing enough, that I hated thinking about how hard he might have in trying to connect with people growing up, worry about him, our daughter and making sure she is fairly and evenly cared for..my husband that he’s doing ok (as much as we talk, he still has taken on the role of guardian, papa bear to us all). We have amazing friends..but I didn’t realize how amazing until we started talking and they just let me talk…and gently asked questions and reassured me that we were doing everything we could to help T and support his success.

Strength in your relationship will give you the energy you need

And this is how the month ended…My parents came to town and let us get up to the cottage on our own. I sincerely think this saved my bacon. After reading an article in the early days of ASD that quoted parents of special needs were 80% more likely to divorce, I have been a big believer that it is essential to keep your relationship strong in helping manage through Autism. This trip time gave us the chance to regroup, to reconnect, to talk, to laugh and to remember why it was we got married in the first place.

We came home stronger, moving on and ready for July..refreshed and optimistic. We will all have those roller coaster times but this part of the ride I want to stay on for a long time.

23 Years Later and I finally finished what I started..

Posted on by laughloveandlife

It took 23 years to get there but I finally finished what I started.

I am pleased as punch to report that I passed my Bronze Medallion final exam yesterday and received the elusive Bronze badge and medal that I had originally started going for when I was 13 years old.

and now the question I have gotten ALL the time?

WHAT possessed you to go and sign up for a class where you are older than even the teacher by 20 years, get to hang with the 11-14 yr old/pre-pubescent, like “Oh my GOD, he’s sooooooooooooo cute” set, force yourself to accomplish endurance tests that aren’t necessary and receive a qualification that would only be good if I suddenly decided to change careers, channel by inner Baywatch star and become a lifeguard?

3 Reasons

1) Because I had quit…when I was a kid and it really has lurked in the back of my mind for this many years and I wanted to show my kids that regardless of the time it takes, it’s always worth finishing what you started.

2) Because I am continuing my quest to show my kids healthy living and next on my to do list is a Try Triathalon and the Ottawa Army Run in late September, so working towards endurance in the water fits perfectly in my training plans

3) Because I have this silly list…a plan of things I was going to scratch off before I hit 40..it’s not 40 that’s the issue (at one time, I wasn’t sure I would get past 29 with the kind of adventures I was having!) It’s the list..Of things I really want to do…to take life fully by the horns and live every day as fully as I can. I have scratched a few so far- motorcycle license, bungee jumping, zip lining, parasailing, scuba diving, surfing, Italy, Spain and as of yesterday, my Bronze Medallion.

The catch is, I have a TON more on my list and find with having kids that my nerves of steel are starting to get a lot more like rubber..torn between making smart decisions that won’t put any of us at risk, and wanting to lead by example to my children to go for the adventure, do something that scares you every day, take the bull by the horns. I want them to go after what they want. To work hard and reap the rewards. To never believe that they can’t do something. If I can get that through to them, it’s one of the most important lessons I can pass on.

I’m not sure which adventure the list will take me next but I can honestly say…its something already starting to percolate in my head.

To Oui or Not to Oui?

Posted on by laughloveandlife

That’s OUR question..

We talk often about our victories and challenges with our autistic son but we haven’t written a lot on our daughter, N. N is a gregarious, lively, effervescent little 4 year old. She might occasionally be accused of being a bit of a drama queen but her endearing kindness and generosity of heart is something we are so incredibly proud of, we surrender to the “fancy pants” nature of her dramatics and just let her be.

She is too smart for her own good. We have been told more than once that she’s a chatty cathy at school, more so because she’s bored with the curriculum than disrespecting authority. She is extraordinarily creative and is constantly creating her own songs, painting pictures, telling us about the gang of imaginary friends and what they are doing “hanging out” in her room.

All this to say that we are now at one of our first mega cross roads in making a parenting decision that could significantly affect N’s school career and either put her on a path of great success and adventure or have her starting the list of “things my parents did to make me turn out this way”. The decision?

French Immersion.

I know…this is truly not the most agonizing decision a parent needs to make but there are a lot of little pieces to the puzzle that are effecting our decision on this. In part, the decision is being swayed by the fact that N has an autistic brother… very close in age that (over the past year) has really grown into a reliance on each other that I’m not 100% sure we want to change anytime soon.

The Pros

  1. Establishing learning of a new language which could greatly assist in career decisions, travel, and so much more
  2. Learning french at a young age would potentially set her up to be capable of learning other languages easier as she grows up
  3. This could provide her the challenge she needs to keep her engaged and enjoying school
  4. This could be something that is hers…and hers alone. I often worry about her getting her fair attention from us. We are so very cognizant these days of making sure SHE gets big props when she accomplishes something, gets alone time with each parent and even gets disciplined in the same way we treat T.
The Cons
  1. N (as young as she is) has taken on a maternal protection of T at school and helps guide him when they are at daycare together or when they come home having done the same curriculum. Conversely, T adores N and protects her if ANYONE gets upset with her. Their connection as brother and sister at this age is fierce and they truly play and interact almost as if they are twins than 18 mths apart. It’s beautiful and I’m not sure how drastically it would affect both of them if we made this choice.
  2. As much as she is bright, I have heard some terrible stories of how much kids struggle in learning regular subjects in a different language, so much so that if they choose to leave the french program, they are years behind other kids and occasionally have trouble catching up
  3. The daycare and school we have the both of them at right now are amazing and we worked hard with them in the development of assistance for T, not to mention the wonderful friends that N has at the school where she would have none at the new school. This would mean two drop-offs, two pick-ups, twice the school activities

There you have it. My quick synopsis of where we are struggling and time is running out. I ran into another mom the other day and she indicated that they are close to a waiting list at the French Immersion and we had better get a move on. She also indicated that the school is darker, dingier and the staff don’t seem to be AS interested in working with parents on their kids success. Fabulous!

So I am appealing to you, the reader, to let me know your thoughts on whether we should move ahead or stay status quo?