Guy

Age: 7
Provincial Riding: Haldimand - Norfolk
Guy is a funny and loving 7 year old boy. His absolute passion are trains and building blocks.
He was diagnosed at the age of 3.5, he wasn't talking and he was doing things that were unusual for his age. Eye contact was limited and he was very sensitive to loud sounds. He could of been diagnosed at a younger age but his family doctor, even after me voicing my concerns, kept telling me that Einstein didn't start talking until he was 5. I had to get a diagnose in a different country, come back with the diagnose so he could FINALLY be properly diagnosed in Canada. But that was just the beginning of this journey.

REACH was our service provider, he was assessed and was eligible for IBI. He was then placed on a waiting list for 2 years.
When his name was getting close to the top of the IBI list, the Liberal government decided my son was too old to benefit from this program. Not sure how could they get to that conclusion since they have NEVER met my child and they never reassessed him again. If they could only see him in therapy, they would be amazed with all the gains he makes and how he is thriving. The gains become even more as he gets older.
Guy goes to mainstream with a full time EA, however his behaviours can be a distraction to other kids in his classroom. We are lucky that we live in a small community where the teachers and other children have learned to know him and love him by who he is.
After over 90+ days of protests, the liberal rethought their strategies and created a new OAP. He started rceiving ABA at home (January 2019) and he was going to start transferring what he was learning to school. We are currently working on learning how to reply to demands and requests as well as asking for things and waiting for his turn without verbal aggression; and also to control the volume of his voice specially indoors (his love for trains has him constantly making train sounds when he is very excited or anxious about something). Unfortunately with the PC's announcement and changes to the OAP this will be impossible now.
Living with a child with autism is a constant struggle. My family is supported with only one income (my husband's) because of the demands that autism represents.... constantly going to doctor's appointments and juggling through different therapies and school appointments.
My recommendations to this government are the following:
1.- Pay now or pay later. Kids are the country's future. If you invest in kids with autism now you will be helping them get skills that will help them hold a job in the future and become independent. If you don't give them the therapy they need odds are good this kids will end up in group homes or some other similar places needing full support (this will last longer than 18 years and will definetly cost way over $140k).
2.-Funding needs to be based on NEEDS and not on AGE or INCOME. Your PARTY made this clear when we were fighting the AGE cap the Liberals imposed a few years ago. And the PC party continued supporting FUNDING based on NEEDS during election year. FORD promised we would NEVER have to protest again in Queen's Park. So not sure why that has changed?
3.- Give parents REAL options. My son needs a combination of ABA (behaviour therapy) and Speech. There are speech therapy services in school. However this are not enough. He got 24 hours in the last 2 years. My son will be 8 years on May and his speech is at a toddler stage. He needs lots of hours to shorten the gap between him and his peers. On top of that, now he needs to wait a whole year to be able to apply for more services... that means another waiting list (so we are probably looking into 2 or more years without government funded speech therapy ). We have been forced to pay for private services. At $130/hr, we pay for as much as we can afford... but it isn't enough to give him the help he needs. Do you know what it feels like as a parent to see your son in pain without him being able to express what is wrong just yelling and screaming? Imagine what your life would be like if you couldn't ask for stuff, even the most basic (like food, a drink, to use the washroom, etc) or to not understand what people were trying to tell you?
4.-I will like to discuss the IPADS. There are already programs for this. Technological Access Clinic (TAC) in Hamilton gave my son his Ipad with the app a couple of years ago. But you can't just get an Ipad and hope for the best. There has to be someone teaching the child and training the parents and school staff on how to use it. So the idea of parents just going and buying ipads with the new childhood budget and zero supports doesn't work. Ipads and experts need to go hand on hand.
5.-Respite: families are already getting respite money. We don't need more money to hire a babysitter. We need money for someone to teach them how to succeed in life.
6.-I will like to discuss Lisa Thomson's education announcement. My son is in school already and he also has needs. So how come only new children will get the $12, 300. It is very frustrating to get behaviour notes constantly and teachers asking for a solution. I am a parent not a behaviour therapist. Also this year I have been asked twice to keep my son at home because they didn't have enough supports... as far as I am concerned they didn't call any other parents those days to keep their kids home. My child has the RIGHT to go to school and the fact that he was singled because of his disablilities is DISCRIMINATION.
I will like to add that ONE Professional day a year for autism isn't going to make a difference. TEACHERS aren't BEHAVIOUR THERAPISTS and they already have their hands full the way it is. I am all in for ABA therapist to work in schools so our kids can finally get the support that they need.
And last but not least #PauseThePlan and sit with the experts and parents. Together we can make something work.
#AutismDoesntEndAtFord
#WeAreThe100Percent

Thanks for reading,
Guy's mom

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