A New Year, with new possibilities

A lot has happened since my last post. After diagnosis, J and I decided to take a few days off from all spectrum related research and just enjoy the holidays with our monkey. We had a wonderful Christmas Eve at home where we spent the day in our PJ’s and watched (or tried to with our little one) some Christmas movies. It was wonderful, and when we went back to work, we felt refreshed and ready to continue on this ASD journey.

We live in Ontario, Canada, so the next step after a diagnosis was to have an Autism services assessment appointment to figure out if Monkey will be eligible for IBI services, that are funded through the government.In Ontario, there have been many changes to this funding and a new Ontario Autism program which is due to launch in June 2017. There was some transitional funding that we were hoping to take advantage of, but we learned because Monkey will not be turning 5 until November 2018, we are not eligible for it (only to those turning five before March 31, 2018 are). Which means that if she is eligible for IBI services, she will be put on a wait list that is a minimum of 6 months long, but since nobody knows if this program will even launch on time, or can answer any question about wait lists, it is more likely to be 8-12 months.

Can I tell you how excruciating it is as a parent to know your child needs something to help her become better, but then be told: sorry – you can’t use it now (when she is at an age that IBI is best proven to work for). The system is so broken. J and I have talked, and since the therapy is expensive ($45-50 an hour x 18-20 hours a week = you can do the math), we have decided to dip into the equity in our house in order to fund therapy while she is on the wait list.

We have been back and forth about the issue – maybe giving her a few hours a week will help, or we can learn things and take a course and do it ourselves for a while – but it all came down to this: we want to do everything in our power to help our little girl, and if means going into debt – so be it. Not every parent will come to the same decision as us – but we have made our peace with it and are moving forward. I feel like when you are a special needs parent – you can’t just be a good parent – you feel pressure from all sides to be an exceptional one. I want to get her help in the shortest amount of time, and sadly that means I need to enlist the help of a professional. As a type-A person, I need to know and see that she is making progress through goals and milestones reached. 

As full time working parents, and with my completing my MBA on a part time basis, there just aren’t enough hours in a day to do it all. Short term financial pain for long term gain is what is needed, but even though we have made this decision, I still feel guilty that it isn’t me, but someone else who may produce these changes in my daughter. Only time will tell of course. 

Further along the track we go…chooo chooo.

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