Trying to understand why T does some of the things he does: where he goes when he disappears:how to help him when he gets really upset: how to make sure he isn’t aggressive with other kids: navigating the school system to try to get him support: the repetitive, obsessive behaviour: ….and let’s not forget the over stimulating, sensory sensitivity that often starts our day off ridonkulously early…
I wouldn’t say that I have found the silver lining in why any of this has happened…we have accepted it and we are moving forward..one day at a time. Yes there are crap days where I feel depressed and sad and wish this wasn’t our fight but there are also some beautiful days…one which I think, if T DIDN’T have Autism, if he was just like any other boy, would he be doing what he just did?
That is exactly what I thought this morning as he woke up (at a reasonable time for once,not the 5 am since Daylight Savings) came into the living room and cuddled up close. And said what EVERY mom craves to hear from their child…
“Mom, I love you so much”
You see, right now, T’s repetitive habit (because they change like the season) is to tell everyone that he loves them so much and he is going to “squish you like a bug” with his face all cute and squished up and then asks for a big, big hug.
I know this came from one of his daycare providers who he absolutely adores and who has a particular bond with T, and who says both of those things to him often.
I’ll take it! and so will my parents, my husband’s mom and every one of our friends who he has now said “I love you so much”.
Because he is a genuine, sweet little guy and when he says it to you….it is so very heartfelt and makes your heart skip a beat out of pure love right back to him.
So as much as at times, this journey can suck (as it does for all parents)…for this moment, I will happily enjoy this aspect of Autism.
Yesterday felt like the lowest of the low kind of days. I felt like it simply took EVERYTHING inside of me just to get out of bed..to keep going…to keep working towards getting T help in school…
All parts of me felt on the verge of hiding under the covers and simply going back to sleep, avoiding the challenges we have been facing for a simpler, quieter, easier kind of day.
Was I depressed? Absolutely. Is this depression…I don’t think so. But easily see how if I were to give in to that desire to stop ,it could easily be there in a heartbeat.
As a family, we’re exhausted…we’ve been working with the school board in trying to find a solution to support our son in school. It’s been incredibly draining and the amount of meetings/emails/conversations we have had about it has us living in survival mode to just get through each day. We are continuing to advocate for T and won’t stop… but its taking every piece of energy we have.
Add that to the fact that I have been injured over the summer, have hardly exercised and ballooned in weight because of it. I just hit a wall. I started seriously questioning whether I needed to consider going to see someone professionally by mid afternoon??
But then we had an Autism Meetup last night. A group we started to support Parents in the city of Toronto who want to look at different ways to manage through Autism, look to each other for support, get advice on different solutions and talk through the victories and challenges we have.
It helped. But this morning helped even more.
I decided I can’t let this get to me. I know we have to keep fighting and I need to keep energy high to take care of our life. I need to be there to support our kids as they begin the school year, my husband, who is writing the most well-articulated letters to anyone and everyone willing (or not willing) to listen and my business, that I need to keep going in order to maintain the flexible schedule we need to access therapies/resources for T throughout the day.
I decided to try to go for a run…and then someone woke up early and agreed to come for a run with me. T…agreeing to come along if he could run in his pajamas.
We raced…full force…fast…as hard as we could…and I remembered why I started running in the first place.
Running helped me work through the diagnosis of ASD, helped me gear up for the fight and I realized that I REALLY need that element in my life to stay sane.
I might not be as fast as I was awhile back, but I’m back.
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?
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
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.
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.