This is Daniel. He is 8 years old. At the time of his diagnosis, at age 3, he was non verbal, non engaged, exhibited self harming and aggressive behaviours , had feeding, self regulation and sensory issues and was a flight risk with no sense of inherent danger. Life was difficult and bleak.
In 2016, after a 2.5 year wait for IBI services, the Liberal government removed him from the wait list , as part of their “over 5 years old” initiative. We advocated for the return of those services we had long waited for. We were parents desperately in search of hope – we had done speech therapy, occupational therapy and sensory integration therapy while awaiting but knew that without trying IBI, we may never know his true potential. His first year at school was not successful and exacerbated many of his self harming and anxiety issues – he was a mess and we were lost.
For the past 2 plus years , he has been in IBI for 14 hours a week at a private service provider. There we focused on managing behaviours and anxieties that had long limited his learning and emotional growth. Strategies were focused on transitions, communication, tolerance , denial , self help and self advocacy skills. Parent training was provided at the centre and in the community and their support cannot be underestimated. In this environment, he has thrived. Now, he rarely exhibits self injurious behaviours, does not attack us physically and will eat with minimal assistance in different settings. His oral and expressive language skills have improved so much now – so much so that at age 8- we have learned recently that his favourite colour is green, that he likes cats, he likes to make puns, he is a self taught reader, adores his classmates at school and can now advocate for not only for himself but for his sister when he feels there has been an injustice to her. He is a joyful child now- he continues to show us how gifted he is intellectually and is funny and playful. He has come a long way but still has ways to go. Learning a new skill that does not come naturally to him takes time, patience and practice. I am terrified of losing all we have gained if we do not continue to support him at his current therapeutic intensity so that he may learn to generalize what is being learned. School is more successful this year due to the skills he has acquired in IBI and the support of his school in learning the strategies he is being taught. He will not be successful without more investment in his adaptive, expressive and receptive skills. The thought of him in a full time, integrated classroom environment without more time to learn much needed skills is truly a horrifying thought for him, his teacher and classmates- no one will thrive. He needs more time in IBI.
Three years ago, I became a parent advocate searching for hope of what might be. Today, I come to you as a parent advocate knowing how much growth there has been since starting IBI and devastated to think that what has been gained might be lost and what more he might have gained if we are not able to continue with this vital service. Daniel’s life will have many challenges as is, any advantages we can give him to help him navigate through life is crucial: our children are a worthwhile investment. Pause the Plan.