How to be your child’s best advocate

Concerned couple with child talking to a professional

You think your child is unwell or may have a developmental delay, or a learning disability – but you’re having difficulty navigating the system to get a diagnosis and a plan. You’re feeling frustrated, worried and scared.

Our story

When my son was 11 he began having stomach issues. The symptoms expanded to numerous other physical ailments over time. After several visits to health care providers  my son was given a diagnosis. I needed to persevere, because as his parent, I knew him best and witnessed his symptoms worsening on a day to day basis.

So where do you start?

Firstly, once your primary care provider has heard your concerns, it’s important to listen to what they have to say. If they tell you that the symptoms/behaviour are within the realm of “normal”, then it may be that there is no need to do further testing or digging.  Often, they can reassure you that behaviours or symptoms you believe to be problematic are in fact normal.  You could then ask, “at what point should I be concerned”?

Continue to ask questions if your gut tells you your child’s symptoms or behaviour need further investigation.

Here are 11 tips that helped me the most:

  1. Listen to and observe your child.
  2. Keep a journal of the symptoms/behaviours your child may be having: the severity, how often they occur and what he is doing at the time. Be sure to bring it with you to help inform the primary care provider about what you are seeing.
  3. Trust your instincts. You know and understand your child better than anyone else.
  4. Build a positive relationship with your primary care provider. They play an important part in your child’s assessment and care. Listen to what they have to say and ask that they in turn listen to you.
  5. Advocate for your child. Speak up for your child if they are not able to do this for themselves. This means asking about next steps, including further testing, a second opinion and/or a referral to an appropriate specialist.
  6. Be confident. Ask questions until you feel comfortable and request further explanation when you need it.
  7. Take notes. Keep test results and information shared by your primary care practitioner. The information may seem clear at the moment, but over time it may get blurred together and disorganized.
  8. Stay calm and collected as much as possible – especially around your child.
  9. If you are going to do your own research, keep it to reliable sources.
  10. Talk to friends and family about your concerns. You never know – they may come up with some new strategies or ideas for getting to the bottom of it.
  11. Don’t give up. If you feel the root problem has not been found or addressed, continue to ask questions and advocate for your child.

Once my child was diagnosed, our relief was enormous and we were given a plan of action to follow. Most importantly, my son realized there was a reason for all of his symptoms and was on track to feel healthy over time.

If you are struggling to find answers or get support, give us a call at 311 to speak with a public health nurse or child development staff.

Can you relate? Have you had to navigate the system for your child? Share your tips with us:

For parenting information or to speak with a Public Health Nurse (every Monday to Friday from 8:30 a.m. to 4:30 p.m.) simply dial 311 or 905-825-6000

About Tamara Kraszewski, RN

I’m passionate about connecting with parents and supporting them in their parenting journey! My nursing career began with caring for infants at the Hospital for Sick Children followed by working as a Public Health Nurse supporting parents with children of all ages. I’m the mother of two grown boys and when not at work, I enjoy cycling, swimming and time with family.
This entry was posted in Parenting, Physical Health, preschoolers, School-aged Children, Services, Special Needs and tagged , , , , , , , , , . Bookmark the permalink.

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