Friday, 7 July 2017

Speak Up and Be Heard

I was browsing through some old material and came across this post that I wrote for WRFN's blog several years ago. 

I couldn't help but smile (in an ironic sort of way) as I read over the article. Carter graduated from grade 8 at the end of June. May and June were challenging months as we struggled with the school board to resolve issues around where Carter would attend school next year. I advocated strongly to ensure that Carter receive the best possible school placement in order that his needs be meet. In the end, we are very pleased with the result.

The information that I wrote oh so long ago still remains relevant (sigh - some things never change). So, I'm posting it here again in hopes that others may find it helpful.

Speak Up and Be Heard

Over the past seven years (actually thirteen now!) I have attended a number of appointments and meetings related to my son’s therapy, education and medical needs. At times I've been outspoken. I’ve expressed my opinion and gotten questions answered. Other times, after the fact, I’ve kicked myself for not speaking up about my concerns or for not saying enough, wondering why I didn’t make the most of the situation when I had the chance.

It’s not always easy dealing with issues regarding our children with special needs. How do we find the confidence to speak up and be heard, especially when dealing with professionals who can sometimes be quite intimidating? How do we know what to push for and how hard to push? How do we keep all who are involved up to date about the goings on and the changes occurring with our kids? Unfortunately, there isn’t a one-size fits all formula for dealing with all the extra (and sometimes unexpected) issues that go along with raising a child with special needs. One thing is certain: we want to ensure that, as parents, we are doing everything we can to promote the best treatment for our children because they deserve no less than that. To do so is not easy. Like most things in life, experience can often be the best teacher.

Here are some things I’ve learned along the way. 

Parent groups are an excellent source of information and support. There are several groups within local communities across the province that are set-up to fulfill the need of parents who are seeking assistance when navigating the world of special needs. The family network that I volunteered for offered a parent mentor program. The program worked by matching a parent mentor volunteer with a parent(s) whose child had similar needs and who was seeking support. It can be empowering to speak with someone who has been down a path similar to the one you are on. If a parent mentor program is not offered in your area, look for a parent support group. You can usually obtain information about these types of resources through your local doctor's office or at your local children's development centre. 

It helps to be proactive. Boost your confidence by educating yourself as much as possible about what is going on with your child. Sorting through the vast amounts of information on the internet can be intimidating but you may discover helpful resources and information that you didn't know existed. Beware of Dr. Google though. There is a ton of information on the web and it can become overwhelming. Try to stick to the websites of reliable organizations. If you feel unsure about going on the internet to seek information, ask a friend or family member to fill this role. They can share with you the pertinent information they’ve found.

It can often be helpful to provide relevant information beforehand to doctors, therapists, teachers, camp counselors or anyone else who is working closely with your child. Providing information in advance shows that you are organized and prepared when it comes to your child. It also gives professionals a glimpse of who your child is and what they’re all about.

You should never be afraid to ask questions. Have you ever heard the saying, The only stupid question is the one that isn’t asked? If you don’t speak up, you may end up leaving a situation wishing that you had. Better to have asked something you feel might be perceived as ridiculous, than to continue to worry about something because you were afraid to ask.

You can be strong when you need to be. Even if it’s not in your nature to be outspoken and you feel you lack confidence when speaking with professionals, reminding yourself that this is about the needs and the best interests of your child can help you to overcome those feelings. It can be helpful to write down important points and any questions you have before a meeting or appointment.

In order to keep the lines of communication open, you will need to remain polite. Speak firmly and directly but remain tactful when stating your point or asking your questions. Polite yet assertive is a winning combination.

And finally:

You are the expert when it comes to your child. Your child deserves a voice and you need to be that voice because no one knows your child better than you do. So speak up!