Our kids deserve so much more

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

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our kids matter

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.

Time flies

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.

Trial and error

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.

Happy new years

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!!

We are all one big community

This is always a magical and confusing time for my lil girl. The holiday season can be so joyus but frustrating for our special needs kids. We were out at the traditional Toronto santa claus parade which my daughter loves. Just the process of getting there is nerve wrecking for both of us. Everytime we go on the train its the end of process of getting off the train because the sensory overload it provides with the engine sounds and crowds getting off. In those moments it becomes tough but also interesting. Almost all the someone is asking if she is ok and one the transit always seems to relate to our situation. Now she loves parades but they can be equally frustrating for a kid that sits on the spectrum. Put into context. You tell them where going to see a parade so when we get there they’re expecting it right away. Very difficult for them to compute that it takes time. While waiting we tend to bump into to people to talk to. I met another single father who has a child on the spectrum also. He was telling me how frustrated he was because his son was driving him nuts with all his little fine detail ways. Now i have had some experience working with families in a respite role. My natural thing to do was to ask him what is his son doing that is bothering him. We went through everything you could possibly imagine. I was walking him through how different sensory works and also helping him understand the importance of routine. One example was him and son were coming out of the bathroom and her son stopped him when he came out and asked if he washed his hands. His first inclination was to be angry at his son for telling him what to do. I helped him understand its part of his sons routine so he is just making sure everyone is on the same routine because that’s all he hears from school. Think of it when the kids are at school one of the constant phrases is “did you wash your hands when done” so in his mind when in the bathroom that’s what he hears and does. The other thing was the touch sensory. These kids don’t take well to unpredictable sensory. In this case someone walks up and gives a hug like everyone else. For most not a big deal. But in this case it needs to be asked before taking place because they need to want the touch sensory in any circumstance. I helped this dad understand that also. See we live in a world where its always about what i want. We rarely take the time to understand what the other person may be going through. Honestly that’s what i love about special needs kids. They help us learn empathy. When i deal with my girl i rarely think of what i want anymore. A lot of thought is put into what is she going through how is this going to affect her first. I helped this father understand that and he was so grateful for it. During our conversation his son was asking to sit down near the street so he could be close to the parade. At first he was reluctant then i reminded him there’s a reason for him wanting that. I seen them later and he made his son happy by sitting upfront. I would like to think our conversation made a difference. He couldn’t stop thanking me for helping him realize. On the contrast my daughter for the last minute of the conversation was asking to go inside because it was getting noisy. As they say you meet one child on the spectrum you’ve met on. Meaning no child on the spectrum is the same as another. I admit this information i didn’t make up. I’ve learned this from a lady named temple grandin. She is autistc and i have been her books since 5 years ago. She is my personal hero. I hope to meet her one day and thank her for being that guiding in helping me understand my girls world and allowing me to partake in who she is. Ever since i decided we were not going hide who we are and what we deal with i have met countless people who need someone just to talk to about their situation and maybe wanting some help. I come to realize whether its the neighbour or around the world we are one big community. I know sometimes our kids get picked and beaten down but the more we understand them the better we can help them. I know this post is a little long but i had so much to share. I hope when people read this someone else learns the same way i did.