Autism Doesn’t End At 5!

Photo 2016-04-02, 1 21 08 AMThe uncertainty of the future was something fascinating during my pre-children life. I studied and worked for the near future, but the senior years never worried me. Emily and Alejandro arrived and my mindset completely changed. Now I need to plan not only for my future but for my children as well. Now their future is part of my present. 

Particularly with Alejandro’s autism diagnosis, a new set of concerns appeared. What will happen when my son with special needs become an adult? Is he going to school? Will he be able to work? Will he be able to live independently? At this point, and based on his current development, I cannot predict anything. Papo, Emily and I just love him and celebrate his progress; support him and wait to see how life develops.

Raising children with special needs, bring extra concerns to the life of their parents. I am not denying that all parents worry about the future of their kids, but if they are healthy and develop under the regular standards expected from school and society; it is easy to anticipate a future with possibilities to study, work and socialization without much struggle. I can relate to that when I think about Emily; but with Sammy it is a totally different story.

Alejandro is currently receiving IBI (Intensive Behavioral Intervention), he is working hard on his level 3 goals, enhancing his communication skills, learning how to socialize and self-manage his anxieties. He still needs to learn and overcome many struggles, but he is responding very well. Unfortunately, the government of Canada decided that IBI won’t be applied anymore after the age of 5; so even if he continues showing progress, the service will stop this coming September.

I was hoping that this early intervention will prepared him better to join the school system; but now with the coming interruption more concerns raise in my heart. It is not fair because we did all that we had to do on a timely manner; we made all the phone calls, attended all the meetings and assessments, answered the same questions over and over again for more than 2 years while we waited patiently on a list to be selected for therapy. It wasn’t Alejandro’s fault that the system was so slow and insufficient! He could have finished all five levels of IBI before the age of 5 if he didn’t had to wait for so long!

And what about all the kids that aged 5 on the waiting list and now are removed, and sent home just with $8.000 to “purchase community services”? Currently in Ottawa, private IBI costs more than $50.000 a year, so do the math!

I know that Alejandro at least received some therapy, but I feel sorry as well for all those kids and parents because I can understand the struggle. We are immigrants here, with no extended family to support us with child care or money, with no savings or assets to sell, papo has been unemployed for the last 2 years with small contrast here and there, but not meaningful employment, and mama working in the non-profit sector, certainly fills her heart with joy but not really her pockets.

They talk about a new ABA model that will continue helping our children, but it won’t be as intensive as IBI and it will bring more challenges to the family including transportation from school to therapy several days a week and more time off from work. How are we going to be able to “purchase community services”? It feels like a joke from those who just write the law but don’t have to deal with it.

I don’t understand the logic of this government. Isn’t more effective to invest in helping our kids with special needs now, while they are young; so they can learn and develop to become adults who can live independently, working and contributing with the country’s economy? All kids deserve to have enough tools to help them become independent and successful adults. Removing this support now, won’t saturate the disability care for adults in the future? 

Autism doesn’t end at 5! The brain doesn’t stop learning overnight and all kids deserve equal treatment! 

Instead of punishing our kids that already went through assessment and currently are in treatment or waiting to be treated; the system should work on early diagnosis programs; invest in training more therapists and qualified professionals that can help our kids… It is a win win: more employment and more resources available. There are thousands of immigrants in the medical field working in survival jobs who could be included in these processes.

Anyway, the conversation just started. I totally support the coalition of parents fighting for equal services for kids who aged 5 years old waiting to be treated. If you can understand the struggle and want to support this cause, sign the petition and share: Oppose the new Ontario Autism Program’s elimination of IBI eligibility for Children over 5



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