Another school year is upon us, and many of us will be back into the fray, fighting for the support our children need. Knowing how to advocate for your child is a vital skill we need to hone. After 10 years on the frontline, these are my top tips to help you.
Why does this matter?
Not only will you be better prepared for each meeting, but the knock-on effect is that you will be calmer. If you’re prepared and calmer you make a more effective case for your child. And subsequently the “professionals” take you more seriously!
I know this from personal experience. When I started out with my small people, I was regularly dismissed by doctors and other ‘professionals”. Today…it hardly ever happens.
Does it make a difference?
The medical and professional world our children inhabit isn’t any more accessible, but I am more knowledgeable, more prepared and therefore a more powerful advocate for my children.
This is how I went from “overprotective adoptive mother” to “one of the most knowledgeable parents it’s ever been my pleasure to work with”. The first quote was a doctor 8 years ago, who, it turned out, was completely wrong in her diagnosis. The second quote is from a social worker earlier this year.
How to best advocate for your child…
1. Do your homework
Here’s an example.
Ted is the poster boy for ADHD. He’s hyperactive, talkative, easily distracted, random and finds it hard to concentrate. If you met him, your first thought would be ADHD.
Knowing his family background, I was laying money on FASD, but that is a notoriously difficult diagnosis to get. I read quite a bit about both subjects, and attended conferences and seminars. Everything I learned reinforced my view that it was FASD not ADHD. But…I’m not an expert so I knew we needed to investigate more with specialist doctors.
I also knew that we wouldn’t get access to the genetics department without first crossing anything else off the list.
So…we got him tested for ADHD. And…he doesn’t have ADHD. I was super happy to get that diagnosis, because it ticked one thing off the list. But we still had to cross everything else off.
So we now know he doesn’t have ADHD, ASD, or learning difficulties.
But we do have one of the rare diagnoses of FASD for my boy!
And I wouldn’t have been able to get that without all of the tips here, but also because I took the time to read up on all the possibilities, and that enabled me to have informed conversations with his medical providers. Also, that I could keep pushing for the next assessment and the next.
It took years. I was exhausted. It was worth it.
2. Collect your evidence
The one thing I wish I’d been told when we first adopted was “keep records of everything”.
If your child needs assessment for anything they will ask you about everything going back to birth and beyond. We have some history before they came home to us that is written, but the rest of it was in our heads. And, I don’t know about you, but I don’t keep an accurate timeline in my head.
I have it now, but it’s take a bit of work to get it sorted, and would have been so much easier if I’d just kept a note as things happened.
Also, if you’re concerned about a specific diagnosis, you’ll need to be able show why you think it’s an issue. So if it’s ADHD you’re worried about, keep a notebook and write down examples of when your child is hyperactive, how they are fidgeting when watching a film, comments from nursery or school about it. Anything that you think will add weight to your argument.
I promise you it will help.
So if there is only one thing you take away from this post….KEEP RECORDS OF EVERYTHING”
- when they first start cruising
- first steps
- when they toilet trained
- first words
- first sentences
- food fads and preferences
- etc. etc. etc.
3. Be prepared
These days I find medical/professional meetings a breeze. That’s because I know my stuff and I’ve done a LOT of appointments over the past 10 years.
When I started out…it was overwhelming. My children’s future seemed uncertain and, frankly, scary. My knowledge of what could be happening was scant. I found the professionals intimidating.
So…I started preparing for each meeting as I would have done when I worked in a corporate environment. A notebook with a list of my concerns and a list of questions that I wanted to ask came to every meeting with me.
Also, I took notes in the meeting so I would remember what had been said to me.
It makes a world of difference and gives you so much more confidence.
4. Stand your ground
This is hard! I guarantee that you will be told that you’re an overanxious parent, or that your child will grow out of it, or something else to get you out of the office.
But if you know there is a problem you need to stand your ground.
Georgia has ADHD. She doesn’t look like she’s got ADHD…that’s all on Ted. But we’ve got a diagnosis, and all the meds. It has been life changing for her.
She was turned away from CAMHS twice before I got her an assessment at the paediatricians service. At her first appointment the doctor focused on her inability to hold a pencil “properly”. She’s hypermobile. Of course she holds a pencil differently!
So I wrote a five page letter, detailing clearly and calmly why this wasn’t the problem and why I believed ADHD to be the problem for us to get a second opinion from a different paediatrician.
5 minutes into our appointment with him, he cancelled his following appointments and spent an hour and a half investigating our claims.
We got an appointment with CAHMS and a diagnosis.
If you truly believe there’s an issue…do your research, gather your evidence, prepare thoroughly, then stand your ground. Ask for a second opinion. Try a different route. Can’t get into CAHMS, go back to your doctor. Or find a different doctor. Keep going. You’ll get there.
5. Know when to pick your battles
This is a toughie. Like the old song says
You got to know when to hold em, know when to fold emKenny Rogers
Both my kids have tracked 2-3 years behind their peers at school since reception.
Once we’d cleared the decks of all our medical concerns, I started work on getting EHC plans in place for them.
That did not go according to plan. The Educational Psychologist at school was adamant that not only did they not need EHCPs, but they didn’t need to be on the SEN register at all.
I’ll be honest, I didn’t take it well. So I sat down with my kids headteacher, whom I trust immensely and who’s opinion I value, and went through my concerns just with her.
We agreed that I would hold back on this one. Georgia starts high school next week, her new SENCo has a scaffolding plan in place to help her succeed in the early weeks of term until she’s settled. When they’ve had a chance to get to know her they’ll work out a more long term plan. I’m very happy with how that’s looking.
Ted has missed quite a bit of school over the last year or so due to surgeries, and also has had teachers off on longterm sick for both years 4 and 5, so has had supply teachers in and out. All of this has impacted his learning!
Funnily enough, when the end of school reports came in, Ted has pulled back about 6 months, and Georgia has pulled back 2 years and is now tracking at her year level.
It was a battle that I didn’t need to have, and that hopefully, because of the choice of high school we made. I won’t need to have in the future. But the new SENCo has agreed that it’s something we’ll reevaluate if they find they need additional support to meet their needs.
You can do this!
If you feel your child has additional needs, or a diagnosis that hasn’t been made yet, you’ve got a fight on your hands. They system is underfunded and understaffed. It isn’t a priority for this Government, and hasn’t been for many previous ones.
However, both Pip and I have proved that with a bit of knowledge and preparation, and more determination and persistence that you think you have, you can get the diagnosis, and support your child needs.
I hope this guide is useful to you. Do let us know if you’ve any questions, or if you have any further tips to add. We’d love to hear from you.