Last night I had the chance to speak to a support group for parents and caregivers of kids with autism. I had been invited to share some insights from my book Your Child’s Voice on how to advocate for support in school as well as in the healthcare system.
While I was the “expert” who had been brought in to share wisdom, there was so much wisdom in the room. It just needed to be tapped.
It didn’t take long before parents started sharing their personal struggles. And guess what? Every issue raised had valuable insights or advice from another parent who had been there, done that. Sure, I was the “expert” but so was every other parent in the room.
As the night went on, the energy in the room changed. It went from a bunch of people who were individually struggling and frustrated, to a collective group sharing and supporting each other.
Parents need support
After the meeting, one of the moms commented — we may have different personalities and ways of dealing with situations, but we all need to support each other. If the parent doesn’t feel supported, that impacts the child. But if we can support each other, we are ultimately supporting the child.
It got me thinking. While I talk a lot about the importance of being part of a community, do people understand the important role this community needs to play in supporting parents and caregivers? It’s not just about being on a Facebook group or attending monthly meetings (although both are important). It’s about opening up and being honest about your struggles as a parent. Truly honest (I know, that can be a hard thing to do).
Only through having honest conversations can we get the emotional support we desperately need. Plus the great advice and insights that comes from others who have been there, done that and possibly won the battle.
It is amazing how quickly walls can be torn down, and true conversations can happen when we admit are true feelings.
Don’t keep it bottled up
As a parent of a child with special needs, when people ask us how we are doing, we often say “fine” as we don’t have the energy to get into the details. True, some people really don’t want the honest answer. But it’s important to find a space where you can be honest.
There can be a lot of anger, frustration and desperation when you feel like you’re constantly having to fight for your child to get the support needed. After a while, these negative emotions can leave you feeling like you are all alone, no one understands or that every conversation is going to be another roadblock.
This downward spiral happens to all parents at some point or another. We all have our hard days.
When you are at that point, or finding yourself slipping that way, it’s even more important you reach out and connect with other parents and caregivers. Share your frustrations, vent, swear, do whatever it is you need to do to let it out. Don’t worry you won’t be judged, as we have all been there. Through your sharing, you’ll find you aren’t alone, which may give you the energy to keep on advocating for your child.
The next time you are struggling, I encourage to reach out to other parents either online or in person and share how you are feeling. If you don’t want advice, but just to vent, say that. If you want to let off steam and hear from others who’ve been there, I promise you will get more support than you could imagine. What’s important is that you reach out and be honest.
Please know you are not alone in your journey. There are many of us out there encountering similar obstacles or fighting for our kids.
To learn more about how to advocate for your child with special needs, pick up Your Child’s Voice. It has great insights and advice from other parents and caregivers as well as healthcare professionals.
This article has also appeared as a blog post on learnpatientadvocacy.com