Tag: education

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 

Autism Diagnosis – 1 year later…It gets better

Posted on by laughloveandlife

We’ve officially just passed our first year with an ASD diagnosis.

It’s sometimes hard to believe that it was only a year ago that we first got sucker-punched with the announcement that our 4 yr old son (at the time) was on the spectrum. This year became a test of everything. A test of our patience, a test on our marriage, a test on our ability to learn, to cope, to support, to stay positive, and ultimately to keep laughing.

For those of you new to a diagnosis, here is a snapshot of what might happen within the first year of discovering your child has Autism. (NB: I’m being brutally honest here in hopes to pass on a realistic viewpoint and let you know that you are not alone)

First 2-3 months: Feels like you’re in a foggy haze. I have seen people react many different ways to a diagnosis. Self-pity, frustration, anger, heartbreak. As much as I tried to be positive, there were still moments I felt like I wanted to scream. I couldn’t comprehend why us, didn’t think he was really that far off from regular kids to be defined as Autistic, embarrassed by how often when someone asked me about it I couldn’t hold it together. There will be many tears, often from frustration as you fumble through trying to figure out what you are supposed to do (especially when it comes to finding support and school). You might feel useless, overwhelmed, sad, disappointed and still completely (if not more so) madly in love with your child.

A dear friend gave us a copy of The first 100 Days by Autism Speaks. It helped. Although my husband and I are both Do’ers- I’m an event planner and he’s a project manager and we didn’t get the sit back and process mode, instead stupidly tried to project manage the Autism right out of our little guy.

100 Days of Autism Diagnosis

Source: etsy.com via Jennifer on Pinterest

 

The next 4-8 months: Once we finally got to the realization that indeed our son was Autistic, that this was going to be a lifelong venture and we needed to start adjusting the how to’s in managing his success, we (or should I say I more so than my husband) had a really difficult time informing people of T’s ASD diagnosis. It felt often that people were a bit stunned and didn’t know what to say..choosing to say something like “well, he doesn’t seem Autistic to me” (hated that)..or gave us that dreaded pity look (hated that more). Then there are those friends who say something brilliant and just help you get through. Best examples of peeps we love and their originality that helped so much..

J- Simply said “Oh..so he’ll be an engineer” That matter of fact..like ASD would help guide his career path to a place where other socially awkward folks might hang out..that there was a pre-existing destination that would be completely accepting of the way he functions

G- Who sent a lovely email with “I don’t know what to say” (love her honesty) and that she was there..on call…standing by if we needed her.

T- Who let me just bawl and agreed it sucked and let me rant to her more than once and asked me how I felt…that rarely happened and I would rarely talk to anyone how I was feeling but T and I are that kind of veritable friend soul mate..who can call you out, ask you tough questions and you love them for it

W-Who is one of the most generous hearts I know and also has had a ton of experience in Autism given that she has family who are as well. She was the greatest listener and advice giver ever. Having a ton of wonderful matter of fact conversations that helped me better understand what Autism is all about.

School

In this time period, we also felt the massive and crushing experience of “working” with the school system to get T some help. It blows my mind how often we heard “the squeaky wheel gets the oil”…and they’re right. Chris and I are both very much sit in the camp of you get more bees with honey but this is one example I can truly say, YOU GOTTA FIGHT! FOR YOUR RIGHT…to have your children supported in school. Many parents who went before me with the an ASD diagnosis, kept telling me to advocate for my son. I truly didn’t know what that meant until dealing with his education. It felt like a battle from the word go.. and we have to say we are incredibly fortunate to have a principal we feel supports us and lucked out with an EA who T and another boy share. The key issue..budget. There is 4X as many Autism diagnosis than in 2002 in our province and yet they have not changed the budget significantly to manage how many kids are needing help.This is something I plan to go on a crusade about once we get our lives in order.

Help

Another key change we did was coordinate help. We went to the Triple P parenting class offered by the Geneva Centre for Autism, which I highly recommend for a number of reasons. 1) You get to talk to other parents who are having similar struggles at home 2) The videos might be a bit hokey but they give you great foundations to work with not only your special needs children but parenting in general 3) You start developing a series of strategies for managing through the day to day to keep your spirits high and your energy focused on the positive. We also worked with an Occupational Therapist to look at ways to help him manage (we discovered he is a deep sensory kid and that a really big squeeze hug will help often when he gets overwhelmed). It also explained a lot why he doesn’t like certain textures..(right now jeans are on the outs) as the OT explained for him, its more like sandpaper than comfort..and why he gets really excitable in loud scenarios (his hearing is super sensitive as well) One of our worst moments was in the midst of a fire alarm. A situation I will never forget. The most valuable we are finding is working with a Speech Pathologist. She has made incredible strides with T in making eye contact when he is talking, taking time to think through what he is saying and learning how to be quiet and not talk..something I didn’t realize how important until we started using this as a technique at home. When he is really excited, we put our finger to our lips (for quiet), gesture for him to focus on what we are pointing at and wait quietly while he accomplishes the task. I tell you, getting dressed went from hellish to happy simply by using that strategy.

8-12 months: I think it wasn’t until then that I was actually able to get out the words Special Needs without cringing at the response I was about to get from people. We still get the pity look but I now realize that its simply because they don’t understand. Who I did feel totally got it was all the teachers in my life. One, an old friend from high school, Jamie M simply asked was kind of savant quality had and talked about the 5 kids he has in his class (this makes total sense as he is an absolute ham and would completely “GET” an Autistic sense of humour). The other, my cousin, shared a beautiful poem with us about truly understanding Autism in the form of the Night Before Christmas. It made me cry but also  made me realize how she and many others are part of that quiet strength we have in our corner. Friends and family are what you need to help you get through sometimes. Talking is good.

Marriage

Speaking of talking, the one thing I can’t stress enough is to keep the dialogue open with your spouse. As I was initially researching Autism, I came across a stat that 80% of marriages with special needs end in divorce. It freaked the crap out of me. So a key thing we concentrated on was keeping our relationship strong to be able to stay strong as a family. We set up and maintained date nights, met at the kitchen table for wine, tears and conversation, banded together to fight the school system. We are (what I would say) one of the strongest “teams” around and even then we faltered on occasion- getting frustrated at each other because of being frustrated with the system or bottling up the heartache we had that life wasn’t going to be ordinary in certain ways. That T might or might not do well in team sports, social situations, school..but talking about it and sharing our struggles made sure that neither of us felt alone in this journey. Check out Our Son Destined for a Team for our perspective on sports.

One Year Later

Life is moving forward and we are seeing some great progress in T’s development.I was starting to feel like he was really behind in the way he interacted with kids but he is starting to integrate a ton better and we are working on social situations. In speaking with his support team at daycare/school, turns out he has lots of friends and in that beautiful way that kids are, when he starts getting upset, they somehow have figured out strategies to keep him relaxed throughout the day. (They gave us a great example of T starting to get agitated and one little girl coming over and handing him a train to hold onto…seriously, I turned into a mushy mess in the middle of the meeting).

To anyone out there who might have recently received an ASD diagnosis, it will get better. You will learn to adjust to the changes in your life and the grieving period will start to subside. You might be surprised by how much of a protector, fighter, lover, or comedian you will become. It will likely change you somehow. If it does, be sure to figure out what you need to get through. For me, its been exercise and laughter and an invaluable support system behind us.

Make yourself strong. Mentally, Physically, Spiritually…so that you can help your kids have the best adventure of their life.

Source: etsy.com via Christine on Pinterest

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?