Advocacy Resources

Author: Karen Copeland

As I mentioned in my post “Gratitude”, I am honored and humbled by the response “I Am “that” Parent” has received since I courageously hit the publish button. The journeys you have shared in the comments have touched me, and I have shed many tears reading them. A question came in the other day about the best way to advocate for your child or youth, and I thought this might be a good post to write. I welcome your comments and tips on ways you have found to engage with professionals, as well as any organizations and resources that may be able to assist families.

Take care of yourself first.

Think about how many times you have taken care of the needs of others before you have thought of yourself. You need to put yourself first, even though this is likely one of the hardest things you will have to do. Be gentle with yourself. No one gets it right all the time. Reflect on situations; what worked, what didn’t, what can you do differently next time. Look at your impossible situations as opportunities for learning instead. Think in small steps. We often think we need a big solution to a problem and this can feel overwhelming. The truth is sometimes those small steps end up having a much bigger impact. Celebrate those small steps!

Connection and relationships matter.

My first and foremost recommendation for you is to get connected. This can be face to face, or it can be online. There are many advocacy groups across the world that exist to support families with this. Many of these groups have parents who have lived experience who provide this support. They can assist with system navigation, understanding your rights and general support and guidance. Think outside the box. If there are no services that provide support to families who have children with mental health challenges, explore services that support families who have children with intellectual or physical disabilities. While your child’s challenges may not be this, these agencies will have a wealth of information on the services and systems that exist in your area and how to navigate these.

When you are connected, the feelings of isolation can start to decrease significantly. I cannot overstate the importance that getting connected to others who shared similar journeys meant to me. These relationships sustain me. I can reach out for support or lend my own when needed. When I felt like I could not possibly continue on, these relationships built me up and encouraged me to continue moving forward, by pointing out all the good that was happening even though I felt hopeless. There is tremendous courage that comes from simply knowing someone believes in you.

Connection does not need to be only face to face. Search for online communities who can assist with support and tips for navigation and resources. There are many out there! I remember when we were first exploring what was happening for our son, I found a message board filled with parents and individuals who were able to correspond with me. They provided me with validation, but also challenged me to think differently about ways I could approach certain situations.

Knowledge is power. This is critical.

First, you need to have a good level of knowledge about what is happening for your child. There are many ways you can find information online and in libraries about the challenges your child might be experiencing. This information can help you determine what types of strategies and supports might work best and may challenge some assumptions about behavior. Sometimes, we do not necessarily know what exactly is happening for our child. This is a good opportunity to explore the work of Dr. Ross Greene and utilize his Assessment for Lagging Skills and Unsolved Problems Tool. When we have an idea of where our child is struggling, we have a better idea of how to support him/her. I highly recommend Dr. Greene’s strategy of having a conversation with your child about their thoughts on situations, and having them assist you with coming up with possible strategies to address these.

You need to have a good working knowledge of the systems you are advocating in. This means looking up policies and making sure you have an accurate interpretation of them. (Hint: many policies are available online.) Understand the process of the chain of command. Use it – don’t skip right to the top or you will be engaging in an exercise of frustration as you get sent back down to the bottom. Know the language of the system – they all have similar but different language. There are times when our family has been dismissed because we have not used the right “system speak”, which was incredibly unfortunate.

Find your champions.

Your champions are the people who believe in you, who encourage you and support you. They are the people who will take your call even when you can hardly speak because you are overwhelmed with emotion. They are the people who continue to stay with you on your journey, even when things between you may challenging and difficult – they understand and empathize with the difficulties you are experiencing, instead of penalizing you for it. These are the people who gently guide you towards problem solving instead of simply offering a “quick fix”. Embrace these champions. Let them know how much they mean to you, why they are important. At times, you may need your champions to do more for you. I wrote about this in my post “Leveraging Our Champions”.

Learn about the great things happening in systems.

This was also a hard one for me to learn. It was very easy for me to have a negative view of the systems we were involved in because of all the difficulties we were experiencing. The truth is though, there are a great many people within systems who ARE making a difference, who ARE having an impact. We don’t talk about this enough, in my opinion. There are people who are going against the grain, who are thinking outside the box and making a difference for children, youth and families. We need to discover these people, embrace them, encourage them and TALK about them. Because if we talk about it enough, the right person is going to hear, get inspired and start to do things differently too. By sharing, we can create “aha” moments for others! If you are looking for some great things that are happening in education, you might like my post Starting with Strengths (in Education) Part 2.

Check in when you feel like you need to give up.

Sometimes this journey is so overwhelming, we feel like there is no possible way to continue going forward. I encourage you to be mindful of those moments and check in with one of your champions, or even better, a counselor to support you through this. I have often connected in with a counselor when I feel overwhelmed. This has helped me to re-focus, to identify my priorities and to generate a plan for continuing on. Circle back to the beginning and be intentional about taking care of yourself first.

Advocacy Resources

I know, this is what you have all been waiting for! I am going to try and categorize these for easier reference. These lists are not exhaustive and I encourage you to share resources you may be aware of in the comments section.

Information about Mental Health Challenges

Kelty Mental Health (British Columbia)

Teen Mental Health (Ontario)

The Hincks-Dellcrest Centre (Ontario)

Canadian Mental Health Association (Canada)

National Institute of Mental Health (United States)

Mind for Better Mental Health (United Kingdom)

Mental Health Australia (Australia)

Peer Support and Assistance with System Navigation

The F.O.R.C.E. Society for Kids’ Mental Health (British Columbia)

Family Support Institute (British Columbia)

Family Navigation Project (Ontario)

Canadian Mental Health Association (Ontario Chapter)

National Federation of Families for Children’s Mental Health (United States)

Autism Navigators BC (Facebook Group)

Other Helpful Resources

Institute of Families (Canada)

Finding the Right Help – Navigating the System; Visions Vol. 10, No. 1 (2014)

Ontario Special Needs RoadMap; providing parents with information on how to navigate the Ontario Education System

Wrightslaw Special Education Law and Advocacy; provides all kinds of helpful advocacy information

 

For more resources, please visit the Mental Health Resources section on this blog. I will be updating it regularly.

 

Feel free to share resources you have found helpful in the comments section. Your resource may be the one that assists a family who is struggling!

3 comments

  1. Thank you! A lovely reminder of what parents need – you’ve come a long way since I first met you when you joined the FORCE – what a wonderful (though sometimes painful) journey you are sharing. I hope you can add The Institute of Families to your list – they act as a catalyst to mobilize families, reframe mental health discourse, and reorient systems to improve child and youth mental health across Canada (and hopefully pull all these resources you mention together!).

    Liked by 1 person

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