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. May and June were challenging months as we struggled with the school board to resolve issues around where Carter would attend school in September. He graduated from grade 8 at the end of June and I advocated strongly to ensure that he receive the best possible school placement in order that his needs be met. In the end, we were very pleased with the result.

The information that I wrote (oh so long ago) still remains relevant. 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. I'd then be left wondering why I didn’t make the most of the situation when I had the chance.

It’s rarely easy dealing with issues regarding a child who has special needs. How does a parent find the confidence to speak up and be heard, especially when dealing with professionals who can sometimes be quite intimidating? How does a parent 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 help parents   who need help navigating the world of special needs. The family network that I volunteered for offered a parent mentor program. The program matched a parent mentor volunteer with a parent(s) whose child had similar needs and 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 find information about these types of groups through your local doctor's office or at your local child 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 amount 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 well-known organizations. If you feel overwhelmed about searching the internet, ask a friend or family member to fill this role. They can share with you the pertinent information they find.

It is 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.

Ask lots of questions and don't stop asking until you have all the answers you need. 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 than to continue to worry about something because you were afraid to speak up.

You are stronger than you think you are. 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. Remember to write down important points and any questions you have before a meeting or appointment. Take notes during meetings and phone calls and write down any new questions that may arise.

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 and be heard!

Coming Home to Writing

Last Thursday was the final class for the Firefly Creative Writing workshop I participated in. It was called, Coming Home to Writing and it was like no other writing experience I've had before. I really enjoyed it.

The facilitators were amazing. Midway through the seven week session they even mailed out some awesome treats!


I've cut and paste some of the nuggets that I wrote during the workshop (below). I wanted to keep them somewhere other than in a dusty, old word file that will soon be lost or forgotten on my computer. 

Some of the writing starts with a prompt given to us by our facilitator, some of it is poetry built from our own writing or from a poem read to us during class, and some of the writing was prompted by looking at a picture.

These days I’ve been thinking about...

These days I've been thinking about writing. It got away from me for a while and I want to get back into it. I’m doing just that tonight with my fellow Fireflyers. 

I was going over some of my writing today and thinking about what holds me back in my writing. It’s the thought of having to have direction and purpose in my writing. The feeling that I have to become published, or recognized in order to be successful in writing. But my first few sessions here with Firefly have shown me that writing is very therapeutic and it’s okay if that turns out to be the purpose behind why I write. I believe that it may lead to more, but if that’s what it is for now, I am going to work very hard to accept that.

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It doesn't have to be...                                           

It doesn’t have to be perfect. Whatever it is that you do, you need to accept that you are not perfect. You have flaws. You make mistakes. You are human. It doesn’t have to be the same as everyone else. Everyone’s situation is unique. Everyone does things in their own way. Everyone is different. Do what is right for you. It doesn’t have to be measurable. It can just be. It can happen without being rated or compared. It can just be.

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Bear with me I want to tell you something about...

Bear with me I want to tell you something about life. It has a way of knocking you down, of blindsiding you, of taking your planned destination and putting up a roadblock. Just when you think you’ve got it all, you get sent in a totally different direction from where you thought you’d be going. You discover a road less travelled and on that road there are stops along the way that you never would have seen had you followed the planned route. You meet people you never would have met and you have experiences that change you and shape you and build you up.

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This is what life does. It takes you by surprise.

It serves things up like an order of burger and fries.

Your order was, hold the onions, but when the burg arrives

It’s piping hot and looking good but the no onions just didn’t jive.

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Now the ears of my ears are awake

When your footsteps they come in on the take

Every night you come calling

My sleep level falling

Now the ears of my ears are awake

Now the mouth of your mouth it lies still

Speech as we know it won’t fill

The halls like your feet do

Speech will evade you

Now the ears of my ears my heart breaks

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Believe, Encourage.

He is different, not less.

Presume competence.

(Haiku about Carter)

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When I see the words take my hand run away I think about running away from it all, from the struggles and monotony of everyday life, from the never ending demands and neediness of others.

If only for a moment.

To catch my breath with you again.

Take my hand and run away.

But if we ran, we would come back, wouldn’t we?

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I see myself in this picture. My boy Bentley watching out for me. He’s got my back. He’s my sounding board. He’s my companion, my pup who pushes me to get out the door and get moving, to take care of myself so I can take care of everyone else in my family.

Bentley is the pup who loves unconditionally. He gives me so much, but what I love the most is that he gives my boy a best friend. When my other two are off on play dates or at birthday parties Bentley is the one who is here giving my boy what doesn’t come to him like it comes to my other two children.

Boy’s best friend indeed.

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Where the singing resides is where I go to unwind. The dancing often follows. It is in this place that I let it all go. I stop the world around me and let the music take over. I sing like nobody’s listening and dance like nobody’s watching. Music becomes my escape, if only for a few brief moments of release. And then I get back to it all again, this time with a skip in my step, and humming a tune until it becomes time to unwind again.