Let’s back up a bit.
Having a child with complex needs is overwhelming.
As long as they made it through the school day without us getting a call at home, ate their dinner (even though it was the wrong type of chicken nuggets), and made it to bed . . . Just managing all that can be exhausting. There is barely enough energy left over to figure out how to get support or respite or funding. You need enough rest to do it all over again the next day. We’ve been there, done that, and have a bunch of the t-shirts to prove it.
There is no exact science or ideal roadmap, but you do need to know a couple of things before you get going so you don’t make the same mistakes we made. Here are the five things we wish we knew before we started. Hopefully, this list will help you succeed.
1. Diagnosis
Without a diagnosis on paper from a healthcare professional, it’s next to impossible to get support. Start with your family doctor or a recommended healthcare professional from your kid’s school. Don’t have a family doctor? Then. you’ll need to lean on the support of the school system or contact your local mental healthcare organization. In St Thomas and Elgin County, that is Welkin. They can help.
2. Document
Document everything you know about your child, including dates and the types of healthcare professionals you visited. For example, did you see a family counsellor? Jot down the date, who you saw, and why. Did you try and get school support but don’t have enough data yet? Jot everything down and record it in your own way. You can use a colour coded notebook, email yourself, record info on a Google doc, use the Notes app on your phone. Use whatever tool works best for you and document the information needed to get a diagnosis.
3. Social Service
In Ontario, each social service supports families in a slightly different way, but there is an order to it all. You must exhaust all the primary and secondary supports before jumping to the third line of defence (such as in-patient treatment). If you know that you need to go through all the primary and secondary supports first, you’ll save time and you’ll be put on the right waiting list and won’t waste six months like we did, on the wrong list. In St. Thomas and Elgin County, your family doctor is first on the list. They can recommend and refer you to the right healthcare professional to start looking for diagnosis or treatment. You can also contact Welkin here in St Thomas or TVCC in London. Every social service has an intake team that will gladly answer your questions. So, be sure to ask if this is a primary or secondary support.
4. School Board Support
At the same time you’re looking for family support, you need to start accessing the school board’s process to begin support. There are a few ways to gain access. If you have a diagnosis already, be sure to access the IPRC process. You can find a link in our Caregiver Support area. From there, you can read all about the IPRC process and begin accessing support from the school. If you don’t have a diagnosis but suspect something, talk with the teacher and ask for a Parent Meeting with them and then one with the Learning Support teacher. From there, you’ll probably need to meet with the admin staff. Again, document everything so you can share the data with the team to prove your child needs support. Unfortunately, without a paper trail, everything you experience doesn’t exist in the system.
5. Seek Help
Find a worker, an advocate, a parent partner, or someone else to help you navigate the system. In Ontario, Community Living organizations exist in almost every community. They have family workers who can answer your questions about support, help navigate where to go next, go with you to meetings, and generally help you figure everything out. Our personal experience with Community Living Elgin has been amazing.
Remember that you know your child best. So, write down the good and the bad. You need to paint a picture of your child so people can help. The first couple of years of navigating are tough, waitlists are long, and it seems like you are constantly repeating your story. Take heart; all this work will pay off down the line. This time will build grit and resilience.
Every Kid ROX is here to help you.
Head to EveryKidROX.com and check out the Support Roadmap section for information about different diagnoses and where to go for help.
If you get lost or just don’t have the energy, don’t worry. We get it. Just email us at hello@everykidrox.com and we can help. You can do it! We believe in you!
