I don’t know if it’s just me, but as a so-called ‘special needs parent’, I love a quote. Since having my son Brody nearly 10 years ago, I’ve been drawn to them. They’ve been on the walls of our home, saved as screenshots on my phone and on countless social media posts of mine. They make me feel seen. Like I’m not alone. And at times they’ve given me strength.

Here are a few favourites of mine.

• “Comparison is the thief of joy”

Whilst it’s completely natural to compare your life to others, it’s never a good idea. When you’re struggling with something it’s an easy thing to do, but it really is a thief of joy. Don’t compare. Chances are you’re comparing to something that isn’t quite as it seems anyway.

This leads me nicely on to quote number two…

• “Life is never like the controlled content of someone else’s social media”

Everyone is guilty of posting ‘Instagram’ photos rather than the reality. After all, who wants to see the not-so-cheery stuff? But just because you can’t see it, it doesn’t mean it isn’t there. Everyone has bad days. Everyone has troubles and worries and things that they don’t want to put on their social media. Social media is just the highlights reel – remember that.

• “Normality is a paved road. It’s comfortable to walk on – but no flowers grow on it” (Vincent Van Gogh)

Ooh this is a good one, isn’t it? And so true. My son Brody has taught me many things but one of the greatest things I’ve learned from being his parent is that happiness and beauty can be found in the simplest things – and it’s something I feel privileged to really *get*, thanks to him.

• “Just because someone carries it all so well, doesn’t mean it isn’t heavy”

Preach! Every time I see this quote, I think of the parent carers that I know. Their strength and resilience to fight for services, raise awareness and live their lives with some pretty heavy stuff.

On the surface, family and friends often think they are fine because they appear to carry it all so well.

They get told that they’re superhuman, but newsflash – we’re not. We are just like you. They carry the load for the same reason every parent of any child does – love. But that doesn’t mean that it’s not heavy. At times, it’s crushing.

• “Happiness is letting go of what you think your life is supposed to look like, and celebrating it for everything that it is” (Mandy Hale)

This is one of my all-time favourites. When I first saw two pink lines on a pregnancy stick, admittedly Brody wasn’t the child that I imagined. That sounds awful out loud but it’s the truth. But you know, I am so lucky that he is the child that I got. I love him more than life itself. Once you accept that your life might not take the path you expected you find acceptance and happiness in what you have. And what I have is a beautiful, awesome boy who I celebrate every day.

• “It’s not all sunshine and rainbows but a good amount of it actually is”

Sometimes life is heavy and hard but there are lots of good days too. That’s always worth remembering.

• “Always look at what you can do” (Henry Fraser)

I love this quote by mouth artist Henry Fraser, so much so I bought his painting saying just that. I want my children to focus on what they can do, not what they can’t. It’s something we all should do.

• “The siblings of special needs children are quite special. Absolutely accepting and totally loving, from birth, someone who is different mentally, and has a different way of seeing the world, is a wonderful trait. It’s a trait I wish there was another way of getting, but there isn’t. And it does involve a degree of not having it fantastically easy” (Sally Phillips)

I instantly related to this quote by the actress Sally Phillips, who is a fellow member of the tribe. My daughter Sydney is an amazing big little sister. She understands Brody better than anyone else and is fiercely protective of him. She is very special.

• “Count your rainbows, not your thunderstorms”

I saw this quote for the first time the day after I miscarried my second child. I was overwhelmed with sadness, and it was quite a tricky time in my life where I thought I must have done something seriously bad in a past life. Do you know when it’s literally one thing after another? Anyway, I remember Brody looking up at me and just giving me life. It’s important to count your rainbows when you can.

1. “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not” (Dr. Seuss, The Lorax)

Being Brody’s mum has made me care a lot more than I used to. Particularly about things I once never considered. I work for the charity PAMIS (Promoting A More Inclusive Society) on the Changing Places toilet campaign. I worked with Tesco on the Tesco Health Junior Nappies. I am a member of my local Disability Access Panel. I am proud ‘that mum’.

This quote rings so many truths. There is so many battles to be fought when you have a disability. Accessibility. Inclusion. Discrimination. Acceptance. The disability price tag. The list is endless.

We need everyone to care so that things can get better. Otherwise, they won’t.

• Guessing what your child wants for Christmas is hard

For those of us who have children who cannot talk or have difficulty communicating, the guesswork each Christmas is hard. We wish our children could let us know what they want and worry about letting them down. Can you imagine what it’s like having a child who is unable to tell you what they truly want? The pressure of getting it right is huge and heavy.

• We won’t be offended if you buy our kids presents that are aimed at children much younger than them.

It goes without saying, all gifts are appreciated, but we would much rather that you bought a gift that our child could play with than something that might well be ‘age-appropriate, but they cannot use. If in doubt, just ask us.

• We are tired.

Admittedly, not helped by the dark and colder days, but we are tired. The change of routine and our children being off school coupled with trying to navigate Christmas so that all members of the family are happy is quite frankly, exhausting. You are probably tired too but SEND parents just so happen to take it to another level.

• Our children might be older, but please bear in mind that they might still *believe*

The big, white-bearded man in the red suit might be a regular visitor to our home for years to come. He’s quite possibly a forever thing.

• We make our own Christmas traditions and that’s okay.

Our Christmas might look different to yours as we’ve learned along the way that we need to make our own traditions and you know what? That’s okay. We recommend that everyone does the same.

• We eat what we want.

Speaking of traditions, maybe a turkey doesn’t feature at our table. Maybe everyone has a completely different meal. Maybe foods that feature ordinarily still feature on our Christmas day. It’s no big deal, we just eat what we want.

• Our friend the ‘iPad’ may well be a big part of our day

Whether it’s for entertainment, distraction, communication or comfort, our child might be using their tablet or iPad a lot during the festive period, and we don’t mind, so you shouldn’t either.

• Our child might not open their presents straight-away

Some children become overwhelmed with presents or simply aren’t as interested as other children in receiving them. Please don’t take this the wrong way. We appreciate your kindness, and the present will be opened in good time, at our own pace.

• We really appreciate the family and friends who stick with us and support us

To those of you who stick around, understand and support us, particularly during the holidays, we might not say it often enough but thank you. We love and appreciate you more than you could ever know.

• We have to do ‘whatever works’ – it’s our motto and it’s a must – please don’t take it personally.

Our child’s needs and happiness are paramount, and this means we live by the motto ‘whatever works’ 24/7, 365 days a year – including Christmas day. Sorry if this means we can’t have Christmas dinner at your house or go to a festive event with you, but please understand that we need to do what works for our family.

We all have an image in our heads of what we think the perfect Christmas should look like. Full of traditions, happy and smiling children, no arguing – you know, very jolly, merry and bright.  The truth is I very much doubt that’s the case in any household, no matter the circumstances. But when you’re walking in our shoes, the pressure can be tenfold because we tend to be extra hard on ourselves.

Here are 5 ways to make it through the festive period.

• Create your own traditions and do whatever works

This. All of this. Do whatever works for your family and create your own traditions. Maybe that’s an untraditional Christmas dinner. Maybe that’s the iPad featuring a lot throughout the day. Maybe that’s Christmas Day in the safety and reassurance of your own home. Go with it, do what works for you and don’t worry about what others are doing. It’s so important.

• Be honest with family and friends

Yes, it would be nice if they just *got it* but let’s face it unless you’re walking a similar path, chances are you don’t. So let family and friends know what works for you. Accept help when offered. The ones that listen to and stick around to support you are the ones that matter.  

• Don’t put pressure on yourself to go to festive events

Perhaps visiting Santa’s grotto isn’t something your child would enjoy, or a festive outdoor event would be too busy or loud for them. Don’t put pressure on yourself to do these things just because you feel you should. They don’t matter. What does is your sanity and your child’s happiness.

• There is no shame in doing some things separately as a family instead of all together

I often take my daughter to things that I can’t take her brother to for a variety of reasons – access, sensory issues, their different needs. This means that sometimes we split up to do things as a family Yes, it isn’t the ideal scenario, but we must do what’s best for both of our children and think about both of their needs. And I don’t feel any shame for that (although of course there is always a side of mum guilt because it comes with the territory).

• Be kind to yourself

BE KIND TO YOURSELF – I’m raising my voice for those of you at the back. This path we’re walking isn’t always easy and the journey is a long one. Try not to be too hard on yourself. You can only ever try your best. One step at a time.