Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

How do I advocate effectively and successfully?

How do I advocate effectively and successfully?

It’s been a difficult few days.

Actually, it’s been a difficult few weeks and months.

When we have good days, it makes all the difficult days feel so worthwhile.

Most of the time I just sail through the bad days the best that I can in the hope that better days are around the corner.

I’m currently wondering if indeed better days are around the corner and if they are, how big that corner is.

Right now it feels huge.

I’m typing this blog from a hospital ward, exhausted, frustrated and despondent.

My son is on his 20+ admission into hospital at less than three years old.

Frustratingly I don’t even know what’s wrong. I just know he’s distressed and this distress has been increasing over the past week.

As he is non-verbal he is unable to tell me what is hurting.

As his tone in his limbs is so high he’s unable to show me where the pain is.

So with Jaxon it’s all guesswork.

Whenever I bring him into hospital, the doctors and nurses look to me for ideas.

They want me to tell them what is wrong so they can fix it.

I’m generally quite intuitive where Jaxon is concerned.

I feel I’m almost the yin to his yang.

If he’s suffering I normally know why and I can usually work out how to fix it.

This time however, he’s got me entirely perplexed.

I have ideas, oh I have plenty of ideas.

But this time I have so many ideas that it’s almost impossible to articulate to the professionals what I feel needs investigating for fear that I’m guiding them away from where the real issue is.

I’m not ashamed to admit that I feel as if I’m not able to advocate for my child in the way I would like.

I have friends who have children just like Jaxon and I am in awe when I see how they are able to get things done in ways that look almost completely effortless, I know this is not the case at all, they are genuinely very good at what they do.

I look to them often for inspiration, I want to learn how I can be more like them and in turn be a better Mother to my child.

I’m almost jealous when I see how determined they are to fight for their children.

It’s not that I’m not determined or that I won’t fight for my child, that couldn’t be further from the truth.

I just don’t always have the confidence to stand up and say this is what he needs in a way I deem to be completely effective.

It may be down to inexperience, it could be lack of confidence, I’m not really sure.

I just hope as time goes on I get better at being the voice he really needs me to be.

I feel as if I’m almost letting him down, my inability to get his medical needs met successfully one hundred percent of the time is something that I beat myself up over regularly.

I’ve never been a confident parent.

I had hoped to slide into parenthood effortlessly however in reality I tripped up over my own feet and landed face first into a world I never could’ve imagined.

To the outside world it may seem like I’ve got it all together but the reality is I really haven’t.

Not in the ways I would like at least.

Anxiety cripples me whenever we have an appointment that I’m not prepared for or when an unexpected hospital admission arises.

I worry that I won’t be heard or that I will have a battle to be taken seriously, thus delaying the urgent treatment my child needs to be better.

I’m a natural worrier so having a child like Jaxon only increases that worry tenfold.

There have been times when I’ve been able to say I’ve successfully advocated on behalf of my child and if it were not for me, he would be worse off.

But those moments are rare. Even when I know I’ve done okay as Jaxon’s Mother and his voice, I can’t always celebrate it.

Instead, I just concentrate on what I could improve on.

I’m not sure that’s necessarily a bad thing as if I aim to be better as both a parent and an advocate then that can only be a good thing.

I want to be a louder voice for my boy.

I want to get his needs met first time, every time. I want to be the strongest advocate I can be for him.

I want to say I did my best for my son and it feel like I have genuinely done enough. 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emma Louise Cheetham

Meet Our Blogger

I live in Stockport, UK. I have Borderline Personality Disorder and Generalised Anxiety Disorder. After years of therapy and getting back on my feet I became a voluntary peer support worker supporting others with mental health issues. Then Jaxon arrived and my life changed forever.

View Emma Louise’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...