This weekend the indy cars came our city. I thought this would be a interesting new adventure for my daughter. We took a big gamble and went down on the Friday which is usually free. Now my girl has her issues with sounds. Granted at times its difficult to read what sounds bother her. So we packed everything including her big headphones. We got an hour into the event and started to realize it was going really. Especially when she didn’t want to move from her seat until the cars finished. Thankfully there was a area setup inside a tent that was showing the track action. That was an area we used to calm and get a break. Thought it was a one day thing then she wakes up this morning asking to go today.
I admit I’m really happy this worked out because I never thought it would happen. I find
another lesson in trail and error. I’m always asked how we do it. I just say take a leap and see if it works. I look at like walking through another door. Just like temple grandin illustrates in her movie and books. If I didn’t read her work I don’t know if I would have to courage to try these new things without knowing what to do if it goes wrong. I’m really glad it didnt come down to that.
As many might know that feelings can be quite difficult for a child on the spectrum. Tonight was a classic example. We went to our favorite park to unwind. Thankfully we didn’t run into any trouble. My daughter decided to bring along her toy shopping cart where along the way insisted to collect pine cones on the way. Usually at the park she gets into a habit of collecting sticks which I’m trying to understand why. Anyways I gave the usual 2 minutes warning before we go. She was running around still collecting sticks we she came upon this little girl and chased her down for her stick unknowingly. Just grabs the it out of her hand. Now I could’ve brushed off to her not understanding but I decided to use it as a teaching moment. At first I asked her how she thought it made the girl feel to take the stick away. Responded by saying”happy” so definitely know feelings aren’t being understood. Playfully tried to take the stick from my daughter then asked her how does that make you feel and responded with”sad”. I tried in a way she can understand the little girl might have felt that way.
I have come so far in understanding my daughter so when things like this come up its a good challenge to work through.
They say the hardest fights are the ones that mean the most. I believe you can characterize the fight for keeping IBI past the age of 5 exactly that. Here in canada more specially in ontario the parents of kids on the spectrum are fighting a government who has mismanaged funds when it comes to autism/special needs. Granted one positive thing has happened where younger kids now have IBI help but cutting it off at 5 makes it useless because for most it’s needed after 5.
There was a positive spirited rally last Friday across the province to support this fight. Talking to a lot of families you hear some good and not so good stories. Talked to a dad whose son is 18 and has the benefit of IBI. He was out there because he knows what the benefit of IBI is and knows this is wrong what the government has done. I’m lucky my daughter whose 11 received some IBI help early on which has served well. I’m out at these rallies because when families say their younger son/daughter have been getting IBI and now being told it won’t be there for them it makes me furious. Seems that because we have a government who has so poorly mismanaged money that they feel the need to balance the books on the back of our kids. Apparently Kathleen Wynnes decision was based on science. It must’ve been very flawed because IBI is good for past age 5. I have a friend who was receiving up to age 18. Talking to people from the United states you can get a sense that they’re much ahead of canada when it comes to this. Honestly though this 2016 where this shouldn’t be happening but when you got government who prefers to ignore reality rather than face the facts it’s a tough fight. Its great to be part of a community that is together and not afraid to fight for what’s right. There’s a rally may 5 at queens park where we’re gonna take it to the government front step. I will be down there with my daughter. Let’s stand and send a message that our kids deserve to thrive and not be deprived. Let your voice be heard by using #Autismdoesntendat5
This has been an interesting week. The parents with kids on spectrum got good and bad news. First the good news the ontario government has decided in the most recent budget to put more into the system help kids in the younger age group. Which is great by all means. I know families with kids those ages waiting and I’m happy for them. The bad news comes when the government wants to balance the books so in order to do there eliminating for ibi for kids over 5 years old. Also the education minister is considering closing some school programs that offer additional support for special needs because again needing to balance the books. For those who have been following its not new for me to write about this. It’s just these last few months it seems that when it comes to saving in the province the special needs community is looked at first. To be metaphoric this a constant slap in the face. Ya im frustrated as a parent but also an advocate for the kids and parents. These ibi programs are a great thing for the kids as they get older. Just seems like the government sees it as just another program. Just when they force boards to cut support staff that is most needed. I be honest as a parent with a child on the spectrum this makes me wanna scream but also look at going back to school to learn these tools so I can help families through the respite program im involved in. I signed a petition that will hopefully make a difference. Here we are at the beginning of autism awareness month and already we seem to take a step backward. Here’s to what hopefully is better times to come.
This is week marks my child’s 11th birthday. Whats more interesting is the refusal by her to not acknowledge it. Part of me understands that with the fact every year we have planned and no one shows up. I used to be bothered by it but I’ve come to grips with it. I guess it’s like the Christmas deal. This past Xmas was the first true acknowledgement.
That’s after 10 years or so. Iam kinda saddened by the fact she’s not bothered by it but I get it. Like everything else in life it takes time to understand these things.
In a world that is so persistent on knowing and understanding everything right away it feels nice to be reminded it’s ok to not understand everything and to take our time.
Its the start of a whole new year. I know we’re like couple weeks into. Its also another year to try some things out and see what fits. This week my daughter has started to par take in a reading buddies program which is hit or miss. Basically because it with kids in her typical age group which as i look on i can see the difference between them and her. I do it partly because of the social aspect it has. Reading isnt the biggest thing. After this we are trying a cardio class for kids. Should be more interesting considering they’ll be quite active. I could be every other special needs parent and say no my child cant do these things but i prefer to take the chance that something may click for her. I admit i cant help but think of difference. I look at the other side where some kids might learn from my kid about acceptance by being around here. If you are a special needs parent out there wanting to do the same i encourage you if you feel comfortable to branch out and trial and error. We’re all in this together so lets help each other out.
Well once again another year has come and gone. Again like every new years for the last 5 years i reflect on when me and my daughters life had a life changing moment. For those not familiar. I was having some difficulty entering my child’s world until one new years at 11:40pm my daughter wakes up crying from a bad dream. Brought her out in the living room on to the couch to help calm her. I had been watching new years stuff on tv when i turned it to a talk show that had temple grandin on it. At the time i knew nothing of her or autism. Got my daughter back to bed and watched the countdown and spent the next 2 hours researching who temple was. Watched her movie about a week later. Ever since then I’ve been able to enter my daughters world and be welcome with open arms. I’m always constantly searching for more info.
Tonight we had originally planned to see a friend for new years eve. Like everything i discuss with my daughter. She wasn’t quite feeling in a party mood so we decided to have a father/daughter watching the grinch movie for new years. She lasted till 10:00 which was good.
Here’s to another coming and going and a much brighter 2016.
Happy new year everyone!!