10 Quotes That I can Always Relate To

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.

Christmas after Covid

After two years of being terrified that I’d bring covid home from work, the Dude brought it home from school and shared it at the start of December. Despite reassurances that children don’t seem to get very ill with the virus, I can safely say I was terrified. Five days later, Mr V was ready to paint a cross on the front door and declare it a Plague House; both me, my Mum and the boy were ill.

One thing that every parent will tell you, is that when you’re child is ill you do not have the TIME to get sick. Let alone with something like covid that takes your legs out from under you, even when fully vaccinated and boostered. Add in the complication of a child who has lung issues, seizures, is struggling to maintain their oxygen levels at night… A short stay in the hospital, potent steroids and a bit of oxygen support saw my little man back on his feet in no time. Mummy here, well, let’s just say I wasn’t quite so lucky.

A rare heart complication (0.146% of covid patients develop it, apparently) has rather put Christmas preparations this year on hold. Whatever your personal thoughts are on vaccination, without it I would now be a statistic. I felt incredibly sorry for the poor cardiologist who had the job of informing me that I had to rest, completely, for a minimum of 6 weeks. I am ashamed to say I actually laughed – the very idea of having the time to rest for 6 HOURS being hilarious to an SN parent, let alone 6 WEEKS. This could be interesting. Over the last month, we have been supported by an army of friends and family who have emailed, phoned, done shopping, walked the dog, and generally kept us going. After several weeks of being shut in with us, Nanna is most definitely wanting to get back to her own home! I am so very grateful that we are all still here; not all of our loved ones have made it and my thoughts are with them more than ever. Here’s to 6 weeks rest (stop laughing), and may 2022 be kinder to all of us x

Treasure In The Darkness, Riches Stored In Secret Places

The return of the dark evenings and long nights recently reminded me of a time when our son James, who is Autistic and has Learning Difficulties, Epilepsy and Anxiety, was only able to leave the house for an occasional night-time drive due to anxiety that he might be taken to school. This was about four years ago now when James was 15, but the story is told as if it was this week… I hope that it will be a help and encouragement for other families in a similar situation as they support their child.

‘Return of the Night Drives!!’ No, not a new film, but a recommencing of nighttime nocturnal adventures with James, the first for a few weeks! We were out earlier this week for well over an hour, having a wonderful time exploring the local area in the dark, visiting the airport, finding other places where there are bright lights that shine in the darkness.

James has been struggling to leave the house, his hesitancy to leave his ‘safe place’ is fueled by anxiety that he might be taken to school. We’ve had some success getting him to come out at night, when it is less likely that school would be the destination, although this had tailed off a bit in the past few weeks too… until Tuesday.

Suddenly, unexpectedly, and delightfully, on Tuesday evening at about 9 pm, James decided he wanted to go out, heading to the hallway and gesturing towards his shoes. That he (and I) were already in our pyjamas (or in James’s case his vest and shorts) added a frisson of chilly tension to proceedings as we rushed out to the car!

Inevitably, we were low on petrol; I tend to drive on petrol, then fumes, and finally on prayers before filling up, so had to call into a petrol station on our journey (and yes, I had managed to pull some trousers on before we left the house!)

Sadly, not many of the residents of Bournemouth had got their Christmas lights up early, but we did see some, and the runway lights at Bournemouth International Airport were on too, which James always enjoys. There was also a great big, bright moon to look at too!

On returning home, I opened the Celtic Daily Prayer book, as is my practice for evening devotionals currently. That evening’s readings totally blew me away, coming as they did on the back of such a lovely night drive with James. The first was this from Psalm 104 (verses 19 and 20):

“He made the moon to mark the seasons, and the sun knows when to go down. You bring darkness, it becomes night, and all the beasts of the forest prowl.” (NIV)

We had seen the great big moon that God had made. God had brought the darkness, it had become night and we had gone out for our nocturnal adventure. Now we rarely go on our night drives alone and are often accompanied by James’ giant Winnie-the-Pooh.  My friend Jane commented that she quite liked the idea that Winnie might be a “beast of the forest that prowls”, and so did I!

And then there was this from Isaiah 45 (verse 5):

“I will give you the treasures of darkness, riches stored in secret places.” (NIV)

This totally blew me away… I really sensed the significance of these verses, and of God speaking to me through them, after our night drive. James and I had found treasure together in the darkness, had found riches stored in secret places. We had laughed together, enjoyed looking at the lights together, been slightly scared together as we drove through the dark woods (were there beasts of the forest prowling there?) Most of all, we had found the riches of spending valuable time together, just being “James ‘n’ Da-ddy!” as James himself said.

Through the tough times of additional needs parenting, of which there are many, through the battles to try to get help from the school, social services, health agencies and others, this treasure in the darkness is better than diamonds. It sustains us, it keeps us going; these wonderful moments, riches stored in secret places, help us and James to have hope. Hope that there will be a better day tomorrow, hope that James will be willing and able to come out of the house during daylight, hope that we can help him to return to school, to his favourite places. Hope for more nocturnal adventures, joyful belly laughs, amazement as we look at the lights together, of time spent just being “James ‘n’ Da-ddy!”

For us, our hope is inextricably connected to our unconditional love for James, and our eternal faith in God. The three come together as a package, and through them, we have experienced wonderful things together. For this is where the treasure in the darkness comes from, this is the secret place where the riches are stored.

Keep on going and I hope you find your own treasure in the darkness!


As a p.s. to this story, James has gradually worked to cope with his anxiety, even returning to school, and we can now go out to his favourite places in the daytime, fully clothed!

Image rights: Authors own

What I Wish People Knew This Christmas

Christmas in an SN (Special Needs) household is often very similar to any other, although there are a few differences inevitably. What did I wish people knew about surviving Christmas as an SN family? Well…

1. Don’t assume that disabled means that they DON’T understand Christmas – Sam can quickly become overwhelmed, but that doesn’t mean he doesn’t love seeing all the decorations in the shops or the lights in the town centre… It just means we have to pick our times to visit. Carefully.

2. The grief that life isn’t as we’d expected can be overwhelming. It takes an enormous amount of effort and planning to make Christmas work as an SN family, and sometimes the sadness and loss at what ‘might have been’ takes its toll.

4. Christmas can be incredibly lonely. This isn’t something specific to families like ours, but it is something that certainly hits hard especially when friends children are able to enjoy Christmas parties and games, while my wonderful, brave little boy may not be able to join in so easily. Or at all.

5. We don’t know what to get our kids either – believe me on this one; for parents of children with delays, buying toys that are aimed at children many years younger than our kids year after year can be soul-destroying. But does it really matter if the child or young person in question is happy?! Nope. But we have the same issues as any parents; only the toys and items our kids actually NEED are usually so out of our price range as to be impossible to even contemplate.

Our kids don’t necessarily love this time of year – it is often too loud, too busy, too bright. Sensory overload can turn a usually happy child into a screaming force of nature. Equally, many disabled children are just as capable of loving the festive season like any other, and are equally likely to be excitable, loud and exhausting! More than ever, be kind.

I hope everyone had a very happy Christmas!

3 Tips for Transitioning Back to School in January

Any break in routine can really affect some children and even more so those with additional support needs. Transitioning back to school after a holiday can be an especially tricky time especially with dark mornings, bad weather and all the excitement that has come with Christmas and New Year. It takes time to get back into the swing of it so be patient with yourself and your child and hopefully a few of these tips might help as we all adjust back to uniforms, packed lunches, early starts, school transport and packing bags! 

Tip 1: Visual routine

You might not have forgotten what time you need to get up, when you need to get dressed or when the taxi is coming but for many children who live in the here and now those things belong ‘last year’ and they need a visual reminder of what is expected and when. Having this in a prominent place days before the first day back and talking about it often can help their minds shift from a holiday zone back to a school zone. For some children this may need to be very simple, even a first/then board but this can slowly progress to a simple sequence. If you don’t have access to images on a computer a simple drawing on a whiteboard or blackboard helps too. It’s about knowing what needs to be done and when and doing things in order. 

Tip 2: Start the bedtime routine days earlier 

I always felt I was doing the right thing by doing the school night routine the night before my children returned so that they knew what was happening. While there was logic in this it also left my children physically and mentally tired for days and they returned from school the first few days back so tired we struggled to get through dinner! I have now found that returning to ‘school night’ bedtime routines days before school actually returns works much better for us all. It creates that body rhythm that is necessary for back to school and resets their body clocks which seems to be that bit harder during dark mornings and winter weather. 

Tip 3: Find the positives! 

Getting anyone motivated to get out of bed on a cold wet morning is hard so is it any wonder your special needs child would rather stay home? For many children finding positives at school can be tricky but maybe there’s someone on the bus they like to see, or a teacher who they love, or just something on the lunch menu they can look forward to? For my son school dinners were, and still are, one of his greatest school motivators but for my daughter, it is always getting to have a small toy in her coat pocket to show a friend at break time. Finding and dwelling on the positives and motivators for any child really help make the transition back to school routines much easier and pleasing all around. 

The first few weeks can be rocky, emotional and exhausting but remember it does get easier. The mornings will get lighter, the weather will improve and mid-term break will be here before you even realise it. 

New Therapies, New Hopes

After four years of waiting, my son is eligible for stem cell therapy

Before my son was born, I never gave a thought to stem cell therapy. I knew what it was because an aunt had undergone an infusion for her rheumatoid inflamed knee, but I really had no clue what the therapy was meant to do, or why it was controversial at the time.

Shortly after my son came into the world, the topic of stem cell usage became very important. Henry suffered a brain injury sometime during the birth process, and as a result, has dyskinetic cerebral palsy and hypotonia in his torso. Doctors at his birth told us he would have global delays in physical abilities. The combination of low muscle tone and poor brain-muscle communication have brought him a host of difficulties: gross motor movements, using his hands without them closing uncontrollably, being able to speak intelligibly – these are some of the major issues he is overcoming. He still has a long way to go.

What does this have to do with stem cell therapy? Good question.

I’m a firm believer in the typical therapies presented to us. Henry has been in physical and occupational therapy since he was two weeks old. He participated from birth to age three early childhood education group for two years. He is now supported by therapists in his school for PT, OT, and speech services. He has made amazing strides! I’m pleased that Henry’s persistence has not been diminished over time, at all. If he wants to do something, he’s going to figure out how he can.

So, we’ve done all the therapies we could get our hands-on, and Henry has participated beautifully. But could we be doing more or something else to help him develop? This is where the stem cells come in.

In late 2015, we found out about a stem cell study being done at a renowned institution in the U.S. We immediately contacted them and provided enough medical history to get Henry on the list for consideration. Months passed. A year. Eighteen months. We kept contacting the study coordinator but got no further in the process of them actually admitting our son.

In the meantime, we kept trucking along to therapies, week after week, month after month. Two years turned into three, and still, we had no idea if Henry would get the chance for stem cell infusion. We had banked his sister’s cord blood when she was born and knew we could use it. All we needed was a green light to go ahead.

I had pretty much given up on hearing back from the university. And then, four years into the waiting, I finally did. My son is not eligible for the study, but he can still have the infusion performed! His appointment has been scheduled and he is ready to go.

And now, we wait again. But this time I am waiting with the hope of something that seems closer, more real than before. Please check back for updates on this exciting new time in our lives!

‘What would he/she like for Christmas?’

Oh not again. Every year, it’s the same brain-stretching, mind-bending question. And honestly, I haven’t a clue. The things my boy NEEDS are now so expensive; ‘special needs’ see… it’s like putting the word ‘wedding’ in front of the word ‘dress’, suddenly you need to put multiple 0’s before the decimal point. So, we’re down to clothing or books that we can read to him. He’s a 10yr old boy, I want my boy to have the kind of magical Christmases I remember as a child and although presents aren’t the most important part of that they are a big part of it for a child. Santa isn’t well-known for delivering just socks after all.

A lot of friends will be buying their children toys which they expected would long since have been grown out of. Sensory needs, developmental delays, autism… all impact what a child wants to play with or CAN play with. It’s heartbreaking buying the same baby toys every year for a child who has long since passed the age recommendation on the box. We have it easier than most, one of my Dudes greatest loves his Lego and with such a wide variety of sets to choose from we’re never short of ideas in that department! My boy’s motor skills are too poor for him to be able to use remote control toys, lack of independent mobility means traditional toys like bikes etc are no use to him either. And while adaptive technology is amazing, it is out of our price range.

Often, Grandparents, friends, Aunts and Uncles are asked to consider putting the money they would have spent on him into his bank account; by pooling resources, we can buy him adaptive toys etc that he CAN use independently. New pyjamas are always a good go-to, a book as he’s a proper little bookworm like his Mum; he may not be able to read them himself, but it gives us an excuse to read WITH him. And if I’m honest, any excuse to spend more time with my boy is one I’ll happily take! These are just a few points to keep in mind for next Christmas!

Holiday Hibernation

It’s perfectly acceptable to bow out of seasonal festivities

This season brought so many activities and events that don’t appear throughout the rest of the year. We had the neighbourhood walking tour of lights. And Aunt Betty’s cookie exchange. And the church Christmas brunch.  And toys for tots volunteer gift wrapping. And a white elephant gift exchange for kids in our playgroup. And more! Every day of December it felt like another invite was received. Personally, I was happy to receive them.

There was a time when my son was too needy and was emotionally unable to join me at a social gathering or let me go without him. Strangers (even if he had met them several times) startled him, made him nervous. He could sense that they didn’t understand his complex needs, however willing to help. For me, having my boy with me meant I could never relax. I don’t say that in a selfish way; my primary job and joy is to serve my son. But knowing he was in a new place where he could fall, hit his head, get scared – these possibilities would occupy my mind so much I couldn’t enjoy myself. I stopped attending events altogether. It was simply too difficult.

Fast forward a couple of years. My son is now much more intelligible when speaking, and he is adept at using his talker. Our circle of friends has not changed significantly, so he’s used to being around my closest group. He attends school, and so interacts with different adults than at home, and his social comfortability has positively increased. As a result, I’m able to both host events and attend others without my son, and he is comfortable either way (as long as I give him enough notice that something is happening).

But you know what? Either of these choices – to accept invites and attend holiday events, or to hibernate through the whole season, because it was too difficult or because you weren’t interested – are completely fine. Over a longer timeline, you’ll find that the closest and most supportive friends in your (and your child’s) life will not be offended by your declining their invitations. They’ll keep inviting you, to express their love for you regardless of whether you ever come to their cookie exchange or not. And one day, you might feel up to coming out of holiday hibernation, and those friends will welcome you with sincere hearts.

When People Don’t Believe You as a Special Needs Parent

It’s easy for people to say ‘Mum (or Dad) know best’ but sadly in reality when it comes to parenting a child or children with extra needs the sad fact is that parental opinion is far too often ignored, belittled and even worse made out to be lies! 

When my twins were born my daughter struggled to feed. I was told it was the way I was holding her, my milk wasn’t enough, I wasn’t winding her enough, I wasn’t getting her to latch properly and so on. Despite the fact her twin brother was feeding great and gaining weight it was somehow all my fault. It turned out my daughter had horrendous colic which required medication to help but that was my first experience as a parent to a struggling child of feeling I wasn’t believed. 

Not being believed left me feeling like I was a failure and that the issue was all my fault, which wasn’t the case at all. 

Months later I happened to mention to a health visitor that I had some concerns about my son. He wasn’t giving any eye contact, he wasn’t reaching out for toys like his sister and he wasn’t babbling or attempting to make any sounds. Initially, I was made out to be paranoid and told to stop comparing my twins and that ‘boys are always a bit behind so don’t worry.’ 13 years later and my son has since been diagnosed with three separate eye conditions, he’s still non-verbal and he has global developmental delay and learning disabilities. 

Not being believed meant vital referrals were not made until later and support was then delayed. 

At 3 my son was diagnosed autistic and by 4 he was in full-time special needs school. His diary would consistently say he had a ‘good day’ and feedback was positive yet at home, he had horrendous meltdowns, was difficult to manage and sleep was erratic. I would often mention this to school wondering if there was perhaps anything distressing him or any changes he was perhaps struggling with. Rather than the support I was met with a wall of ‘it’s not what we see’ or the classic, ‘it must be home that’s the issue.’ I was made to feel like I was exaggerating, lying or simply unable to handle my own child. 

Not being believed affected my mental health making me feel worthless and doubting my own abilities as a parent. 

Unlike her non-verbal twin, my daughter had clear speech and a large vocabulary. She would sing, question, describe and share so much at home yet I soon found out from nursery and school that while she was there she was withdrawn, anxious, and silent. Before she started school she was diagnosed with selective mutism which I soon discovered was very misunderstood. As a result of being unable to read to her teacher, my daughter would be given the same reading book at home for weeks even though she fluently read it easily at home. I would gently mention this to school but I was initially seen as being pushy, demanding and seen as someone who thought themselves above the teacher. 

Not being believed resulted in my child being held back academically and not meeting her true potential. 

Like many parents, I am not always comfortable speaking up. I avoid confrontation and have huge respect for teachers, doctors, therapists and paediatricians. I don’t like being a ‘problem’ or questioning too much, but when it comes to my children I do feel I know them more than anyone. When I do find the courage to ask for help or speak up about something it’s because I feel this is necessary and not because I just want to get attention or be difficult or whatever else. 

I know there will always be a small minority of parents who are over-anxious or exaggerate something for attention or have issues of their own but by far the majority of parents and carers are asking for support and mentioning issues because they know their child needs help and they are trying to support them better. 

What we need is people to genuinely listen to us, believe us, and support us without judgement or condemnation. Believing and working with us empowers us to be the best parents we can be, helps the child reach their potential and ensures services are in place as quickly as possible to pick up and rectify issues as they arise. 

It’s easy to say ‘parents know best’ but sadly too many special needs parents like me have long felt ignored, unheard and made out to even be liars because no one believed us when we mentioned issues. Imagine how life-changing it would be if only every special needs parent was heard and believed.