Empowering Your Family: Ways to Implement Change & Receive Support While Waiting for Mainstream Services
- Katie Walker
- 6 days ago
- 5 min read
Starting a new year often brings hope for progress and improvement. For families waiting on mainstream services, the delay can feel frustrating and overwhelming. While being on waiting lists is a practical first step, it’s equally important to take action yourselves. This post offers practical ways to help your family thrive while you wait for external support. Although mainstream services may indeed provide diagnosis and a possible EHC, you may still be left without adequate and up to date support after the wait. This is why empowering yourselves now, while you wait is crucial.
1. If you are in crisis make your world smaller (temporarily, even if for one day).
If you are struggling with behaviours that are created from overwhelm, tiredness (sleep disorder), increased anxiety, EBSA, violence, constant meltdowns or burnout then let us just pause. Pause everything until a better balance is restored. Take away school expectations, homework, after school clubs, take away the expectation of bath time or washing hair, even going to a families members house for that sunday roast. Make your world smaller, temporarily. It is here that many people may question - but the world isn't going to adapt for my child long term and so pandering to my child's needs won't help them in the long term. Remember that right now, your child doesn't need to think about the long term. You don't put a baby straight onto solid food as a 6 month old because when they're an adult McDonald's are unlikely going to puree their big mac and fries.
Remember that with anxiety disorders, sensory processing disorders, autism, ADHD and PDA the environment will have a huge impact on their quality of life in the moment and long term. As parents we have to be the detective in figuring out the balance between challenge and adaptation to suit these individul needs with the goal of progression. Every single child will be different. A tough and complex job to do on the daily! I can help you with this. My background is behaviour management in schools and communities. I also have three neuro diverse children too. I have filtered through all those mainstream misunderstandings (like reward charts and taking away the Ipad) to ensure you are left with strategies that really do work.
The link is here
2. Does your child have PDA/ASD/ADHD or a combination of PDA/ASD/ADHD?
Then you'll likely be pulling your hair out! Me too at times! PDA on it's own or coupled with another diagnosis is complex. It will challenge your mindset and patience for sure! I know many people are not keen on zoom sessions (they're nerve wracking) so I have created a digital download with many strategies that really do work. We cover equalising behaviours and how to level the playing field; PDA behaviour strategies; How to change communication styles and how to approach demands; Also, school adaptations that you can request and so much more. I will add the link here so you can see for yourself what is included.
Even with a diagnosis, PDA is sometimes unrecognised (depending on area code) and behaviour strategies are rarely discussed at professional levels. There is no need to feel alone with it though, this digital download offers plenty of understanding, support and srategies that you can try today.
3. Parental emotional well-being
Waiting for services can be frustrating; Sometimes working with mainstream services such as schools, can feel disempowering and toxic; Going out within the community can feel a challenge; Balancing siblings needs can be overwhelming; We can get cabin fever ourselves being stuck indoors constantly; The admin of EHCP's, DLA and securing a send school can feel impossible. Our own mental health can take a toll. Is there any wonder? I can help you. With a background in life coaching, therapy and family support I can offer genuine, non judgemental support. Being a mum to three neuro diverse children myself means offering a space that can be unfiltered (something the professional world can not, without attached stigma). Sometimes just speaking out loud to someone that genuinely understands can offer huge emotional relief and connection. Personally, I too have used services such as weekly counselling, because connection and being seen filled my cup hugely.
I will pop the link here for you.
4. Educate yourself on the system and how your child's diagnosis will be impacted by it.
This is so important. Mainstream has taught us to get the diagnosis, the EHCP, the DLA and 'fight' for those reasonable adjustments and meetings. That is years of you and your child's life 'waiting' and in those wait times damage can be caused, such as anxiety; burnout or EBSA. Check out my Podcast, SEND-PARENTING-BALANCE which includes information on how the system is structured but also in depth information on most neuro diverse conditions with reasonable adaptations / expectations that could help. This is of course FREE. Available on all major podcast platforms.
5. Do you want support in video format, with a bespoke 1:1 email chat so you can access help at a convenient time (10pm for most of us SEND parents).
It contains everything, here the link!
Connect before Correct Behaviour management
Meltdowns Behaviour equals communication.
Looking at the world through your child's perspective
Supporting Sensory Needs (sensory circuits/SPD)
Unpicking challenges.
Violence in the home.
Meltdown safety within the home environment and with siblings.
PDA friendly phrases.
Non negotiable rules and compromise.
Taking Back control.
Parental emotional regulation and well-being.
PANDA approach (low demand PDA approaches).
Child CBT anxiety methods to trial.
Sleep difficulties / REALISTIC PDA friendly bedtime routines (screen friendly)
Making a child's world smaller.
Creating your child's care plan.
Gaming ADHD frustrations
Also included are letter templates that you can download and use with schools ( PDA acceptance, attendance, reasonable adjustments, plus more), links to podcasts, CBT anxiety examples and I've started a care plan for you already! The sessions are pre recorded so you can access them whenever you like. You'll have access to this course for 8 weeks.
6. Evidence everything.
Use this waiting period to gather information and prepare for future appointments. Keep detailed records of your family’s challenges, progress, and any interventions you try. This documentation can support your case when you meet with professionals. Additionally, keep records of all meetings, telephone calls, emails, behaviour patterns at school. Being informed empowers you to make strong decisions today but also later down the line if needed.
7. What are your child's needs?
What a BIG question. Meetings can often end up down rabbit holes due to this question. With complex needs where does one even start to answer this question in a 20 minute meeting with the SENDCo at school? The BEST way to get reasonable adjustments quickly and with accountability is to design your child's care plan. This is the most used service that I offer and provides so much strength for your child's needs being seen. The care plan can also be used as evidence for DLA and EHCP's. I will leave the link below if you'd like further information.
8. Explore Alternative Therapies and Support
Child Anxiety?
EBSA?
ARFID or dis regulated eating patterns?
Thinking of home educating? Questioning if home education will even be right for you and your family?
https://www.send-parenting-balance.com/service-page/home-education-help?referral=service_list_widget
Need a professional letter written to your child's school to recognise your child's needs?
From behaviour support to parental understanding it is all here.
Check out the website
See you soon
Katie x
💜💜💜