Latest Podcast: Who to Trust

On a challenging journey, you need partners you can trust. In this episode we discuss how to know who you can trust.

Spoiler alert: Being related to someone by blood doesn’t necessarily qualify them for the job of confidante!

Who to trust? – YouTube

Spring Forward – To The Park

The playground is a natural environment for kids of all ages.  It’s a place where kids can congregate in open spaces, and where there’s something for everyone. Here’s another instance where planning ahead, problem solving, and creativity comes in handy for parents of children with additional needs. The possibilities are endless.   Some children swing, climb, walk, kick a ball, and slide. While others move about, explore and experience this setting in a different way.  Although there are some physical obstacles to conquer, all the above are activities that children of all abilities can enjoy. And when you see the smile on their face, you will be so glad that you made the effort!

The playground is a world for exploring

For children who are ambulators, the playground offers unlevel surfaces such as mulch, grass and/or tire tread to walk on.  Walking on this type of surface helps develop balance.  If a child is not yet an ambulator, there are many large pieces of equipment that your child can hold onto, lean on, or climb on. This can also help develop strength and balance. If your child can grab something, they can try to move around on their own, navigate around obstacles, and explore their environment. Then you can assist as needed.

For children who are not ambulators, there are numerous spots in the playground that can provide support for them in a supported sitting position. The grass is a front row seat to the action around them.  Sitting in the grass is not a static activity, it involves gazing, tracking, head rotation, trunk rotation, arm movements, and often smiling.  From a sitting position in the grass your child will have easy access to safely move around and experiment with body movements. The barrel swings and rocking toys can be modified with blankets for extra trunk support, and gliding movements in any direction is just plain and simple fun!

Balls, bubbles, and blankets

Balls, bubbles, and blankets are a welcomed pastime for all children. The playground is a place where children gather and where they can learn from one another. Where they can move around using a carriage, a walker, a scooter, a bike, or a wheelchair.  Regardless of the activity, being out and about is another opportunity for a child to be around their peers. It’s a place where kids can learn how to share, learn acceptance, develop empathy and social skills. 

Each day at the park is a new experience, because the people, the activity and the environment is constantly changing.  So, pack up some snacks, some drinks, and some toys, SPRING into a new experience with your child, and take them to the park or playground!!

How Happy Haircuts Happen

We are all sensory creatures, exploring, understanding, and engaging with the world through our many senses. This is just as true for someone has additional needs as it is for anyone else.

Sometimes we can be under-responsive (or hypo-sensitive) to sensory inputs. At other times we can be over-responsive (or hyper-sensitive) to sensory inputs. You can see some of the effects of this in the picture of the person below, used to illustrate different kinds of sensory processing disorder. One of the examples given is, “I hate having my hair cut, washed or brushed”.

Haircuts can be a very difficult experience for children and young people with a range of additional needs. The sensory feeling of the hair being cut; the bits of hair going down their neck or landing on their face, the noise of clippers (especially around their ears), or just the very difficult feeling that a part of them is being cut off and is now on the floor!

Set calming conditions for haircuts

In our case, our son James will only tolerate having his hair cut under very specific conditions. His need for a haircut having reached the point where it was unavoidable any longer meant that those conditions needed to be met a couple of days ago.

The conditions are that James must have his hair cut on his sofa, which is his favourite, safe, place. Next, I must be the barber, and his mum must assist by collecting all the bits of hair up as they fall. We use clippers, grade 4 all over, the only style I can do. James has something that he likes on his iPad as a distraction while the haircut is done. Mum must make sure that any bits of hair falling on the iPad are removed immediately!

The danger zone

We start at the back, out of sight, to get used to the clippers again. And then do the front, leaving the difficult part around the ears until last. When the rest is done and only the hair around the ears are left, I am always nervous that James will refuse to go on and will have the weirdest hair style in town! With the soundtrack to the film ‘Top Gun’ in my head, we take the clippers into the ‘Danger Zone’ around the ears!

Usually there comes a point when the worst is over and it’s just a matter of tidying up. Checking that the two sides are level, that the back looks neat, and that I haven’t missed any wispy bits. If we don’t finish these areas then it’s not the end of the world. But usually with some encouragement, and the reassurance that we are done with the ‘Danger Zone’ then we can finish off.

Lots of positive praise

A bath straight away afterwards to help remove any scratchy clippings is helpful and then we are done. We give James lots of positive praise for coping so well. A reward of his choice, and then showing him how much smarter he looks, usually gets a smile!

Routines are important. When followed well, can help to ensure that even difficult experiences like haircuts can be coped with and completed well. We only cut James’ hair every three to four months. There is plenty of time for any imperfections to ‘grow out’ and for him to be ready to accept the clippers again!

What haircut stories do you have? How do you support your child or young person when they need to have their hair cut?

Keep snipping!

Springtime is a real time sensory experience

Springtime means that it’s time to get outside.  It doesn’t matter where you are in the world, everywhere you look; there are trees and flowers blooming and growing, just like your little one.  Raising a child with additional needs often means that you may have to modify the environment or the activity, to make it accessible to your child. The colorful landscape, and endless outdoor experiences, offer any family a great opportunity for storytelling, imaginative play, and new experiences.

Sensory garden activities

The mild weather and longer days are perfect for gardening activities.  Some activities such as digging, planting, or weeding offer some great opportunities for fine motor developmental, upper extremity muscle strength, and motor planning.  Your child can help with watering plants, bushes, and flowers.  There are so many ways to water the plants. One can use a hose, a watering can, a plastic water bottle or using a cup and a pail of water.  Either way, your child will be thrilled to witness the changes over time, just from their watering. They’ll also be proud to be ‘your helper’.  If your child is a bit older, this is a great time for them to participate in outdoor experiments or art projects that are just too messy to do inside. 

One of my favorite outdoor activities includes a water sensory table with a theme (such as small plastic animals, shapes, or colorful ping pong balls).  Another great sensory activity for all ages is simply standing a piece of plexiglass up against the house.  Your child can be sitting, in supported sitting or standing, or standing independently.  Spray shaving cream on the plexiglass, let your child create a masterpiece, rinse, and repeat. 

Every nature walk outside can be a visual extravaganza

Every nature walk outside can be a visual extravaganza.  The colors everywhere, the abundance of different hues of green, the people that are out and about around. These all create some pretty neat things to look at, talk about, draw, or to visually track.  Each experience, be they tactile, auditory, or visual creates an empty canvas for you and your child to design.  The more they experience, the greater their memories and feelings on which to build upon. 

Experiencing nature at its best is low cost, convenient, and so exciting

Experiencing nature at its best is low cost, convenient, and so exciting. As a caretaker, here are simple things to consider during this season.  What brings you joy outside? Is there any equipment you need to help your child experience the outdoors? What’s your child’s favorite activity to do outdoors? Is there one novel experience that you can share with your child this season?  Spring: To leap, jump or move forward. How will you help your child leap, or move forward into this season?

Sensory Spring Fun

The Easter school holidays are coming up fast, so here’s some fun sensory ideas to try with your children to help them think about spring!


Spring is the time when all the wildlife wakes up after the winter. If you have a garden or can get to a local park, you will be able to find all sorts of creatures. From creepy-crawlies hiding under stones to beautiful birds, and maybe some animals like a squirrel or a fox. See how many different creatures you can find and try drawing a picture of them to help you remember what they looked like. The Wildlife Watch website might be able to help you identify what you’ve seen:


Depending on where you live, you might be able to hear birds singing. This can be increasingly common in the spring. If you have a local park, or if birds visit your garden, listen to hear their songs. How many different ones can you hear?

If you want to identify what birds you heard, or if you can’t hear the birds near you because of other noise, here’s the RSPB ‘Bird song identifier’ website that can help you!


Either in your garden if you have one, or in a local park, find some spring flowers. There are likely to be crocuses, daffodils, maybe even some tulips. Smell their scent and enjoy how lovely it smells. How many different flowers can you find? Take photos of them so that you can remember them all. To help identify what flowers you have found and smelled, the Royal Horticultural Society (RHS) has a website which can help:


While you are out in the garden or the park, can you find some different things to touch, like a piece of bark, a pinecone, a smooth stone, a snails shell, a dandelion, or some grass to stroke. Try and find as many natural touch sensations as you can. You could also have a go at the ‘Spring Guess? Bags’ idea here:


Once you’ve got back indoors from your spring adventure, maybe you could try some taste activities too. Have a selection of different taste sensations, something sweet, maybe some Easter chocolate or some honey. Something sour, maybe a lemon or some sour Haribo’s. Something salty some crisps or snacks. And then something savoury, some cheese. Have some different fruit and veg options in there too. What taste sensations do they prefer? Here’s a simple tasting exercise that might help:

I hope you have fun exploring Spring through your senses together!

What do you remember?

2020 was a year that changed everything for the whole world. The past two years have been scary, between trying to keep families together and safe without knowing what lay ahead or what the outcome would be. A constant threat of contracting a virus that the medical profession knew little about. But it’s not what I primarily think of when people speak of 2020.

Why 2020 was such a bad year for us

Why? Because that was the year our son’s epilepsy and hydrocephalus went out of control. He was having almost constant seizures and needed to be transferred to resus at the regional children’s hospital on numerous occasions. It got so bad that the local paramedics would come in and say, “how many this time?” and just help me out to the ambulance. Being greeted at the doors by a resus team was terrifying. It happened more times than I care to remember. He was transferred from our closest hospital to the regional one. They felt he would need to be put into an induced coma and cared for in PICU because they just couldn’t get on top of the seizures. I really thought we were going to lose our precious boy.

We were in and out of hospital constantly and with the threat of covid-19 hanging over everyone, it added more pressure to an already desperately hard situation. It turned out he needed two shunt revisions in August within 48hrs of each other and then another in November. Despite him having seizures that do not leave him deprived of oxygen to his brain. He suffered massive regression of skills and escalation of behavioural difficulties. An MRI of his brain showed no changes, but the team felt it had all just been too much for an already compromised child to cope with.

Things have started to look up

He was moved from a mainstream to special needs school after educational psychology said he was in a “trauma response” and needed pastoral care more than delivery of the curriculum. In hindsight, it was most definitely the best thing that could have been done for him. He’s now been in that school for a whole year, and we feel we’re getting our happy boy back! He is making friends, especially a special little girl who sits beside him. Apparently, they are getting married, although the jury is out on where they’d live since Jacob wants a treehouse and his love would like a castle.

As our son started to heal, I feel like I have too

I feel the teachers have just “got him” and have worked on a very simple behavioural plan that is now carried over to home as well. He has done so well with it. All we need now is a little laminate on the back of his wheelchair to visually remind him that he gets two “warnings”. Which are yellow faces, before a “consequence” of a red face. He still has meltdowns and sensory issues, as well as times where he “zones out” and can’t cope. These are getting fewer though and I feel like I know how to cope with them better. He sees a psychologist in school who he calls his friend because they play games together. She has helped him so much! As he has started to heal, I feel I have too.

We are though the worst of it now, we are so grateful

We will always remember 2020 as the year he was so unwell. But I know that millions of families across the world experienced much worse than and have lost loved ones. We feel like we are through the worst of it now and can enjoy things together as a family of five again which, is something to be hugely grateful for.

Children’s Mental Health and Disability

Recently it was “dress to express” day at school whereby children’s mental health earns a day on our calendar, and we reflect on those challenges that children often face. You can have all the awareness days in the world but without the actual ability to help, drive change, and receive vital services – what is the point?

It came at an apt time really because after years of refusing sedatives for Amy to help ease her violent and distressed outbursts – I finally admitted defeat.

It’s heart-breaking to watch and nothing we do seems to calm these events

Amy often gets so angry (especially around bedtime and through the night) and will rip out her hair, scratch her face, kick the bed doors loudly and scream. She managed once to knock off her big toenail. It’s heart-breaking to watch and nothing we do seems to calm these events. It sometimes happens on days out where she can’t cope with the activity or environment too. Not only is it hard for her, but it can also be really isolating for us. We also can’t leave the house with her after a certain time too.

So, we finally agreed to try the medication and use it as sparingly as we can. It’s hard to strike a balance because no I don’t want to “switch her off”, equally is it fair for her to be experiencing this level of distress?

I was scrolling through twitter late at night when I stumbled upon the page of someone who described themself as severely physically disabled. They had been having a hard time accessing support they needed for so many things. For sore limbs from muscle spasticity, for reflux, which was causing them pain, and for counselling whereby the counsellor would have an understanding of what this person encounters daily.

Mental health challenges afflict so many people, and we can talk more openly about it now

This is truly something to be celebrated. But I feel that surrounding disability there is still a stigma. 

It has been mentioned by professionals in the past that Amy’s “angry outbursts”, self-injurious behaviours and attacking of those around her relate to communication frustration.

She is non-verbal. We are still working hard on communication but it’s proving more difficult that we had hoped.

It must be so infuriating wanting to articulate something to someone who allegedly knows you best… and they just don’t get it.

With learning disabilities, chronic pain, communication issues, gross and fine motor impairments it is no wonder she often lashes out. 

I have searched endlessly for solutions

It would be great for her to be able to access talking therapy, or counselling but I know that this is never going to be an option.

I had hoped hard that eye gaze technology would have been a success for her and that she would be able to communicate with us.

We use symbols on cards but sometimes she won’t engage or is very inconsistent with them. Though she is nonverbal she communicates excellently in letting us know what she wants i.e., iPad, music, change in position, change of pad etc. But further than this we are struggling.

Amy is now a big little girl… the hits and kicks are harder, moving her to safety is harder. Some days she seems deflated, drowsy, disengaged from us. I wonder if this is due to seizure activity, is she tired, or is she feeling depressed? 

If she could talk, what would she say? Is she happy?

In the various cerebral palsy groups, I am part of, I often see parents of verbal children mention that their child is feeling anxious, sad, different etc.

I see them trying to find ways to help their child understand their value and worth and that being different is okay. I see parents feverishly trying to find ways to reduce the physical aches and pains that come with the diagnosis.

It’s so difficult for everyone and I always read the responses with interest as we are yet to find something that we think will help. If she could talk, what would she say? Is she happy? On social media she appears to be the happiest child in the land, but the reality is different.

Our paediatrician has done a referral to HYMs (healthy young minds) which I am informed is a massively underfunded and overcrowded service.

It just shows how many children are struggling and need more support. The doctor isn’t sure what they can offer us other than medication, and we have been offered a few that come under the antipsychotic category.

I have declined thus far as she has so many medications and I want to try and minimize them. We don’t really know how all the meds interact with each other; I don’t want to make things worse. I’ve had meetings where professionals have mentioned that she may be suffering with anxiety or depression. It has been brought up a lot.

Hobbies and normality are fundamental in aiding good mental health

I found a list online that said, “speech and language therapy, educational assistance, support groups, physiotherapy, medication, adaptive sports program, behavioural therapy, social work, psychotherapy”. Seeing this list confirmed to me that we are presently doing all we can to pursue as best possible mental health for Amy. I am hoping this year to try adaptive sports (boccia) and wheelchair bike riding activities with her, and for us to have some lovely family holidays because I sometimes think hobbies and normality are fundamental in aiding good mental health.

I often look at Amy, admiring her beautiful little face, and I wonder “what is she thinking?”. So many times, I have seen her watch children running and playing at the park and I wonder “does this upset her? or is she just interested?”. I have often felt an “outsider” or “different”, I get a bit of imposter syndrome too when in groups and I think “ha, look at you trying to fit in and look normal!”

So, I do wonder, is she aware of the differences? She certainly gets frustrated fighting against her own body. I find myself too often comparing her childhood to mine. It couldn’t be more different. I wanted her to have what I had. But it’s just different. I wonder how much of my anxieties I project onto her.

So far, I have mainly learned:

  • Do what she loves. Amy has us singing pretty much constantly. When we have done enough singing, the iPad and videos come on.
  • Try to ignore the onlookers. The situation is only made harder by people stopping to stare. It adds to our anxiety which adds to hers. 
  • Ignore all judgment. These people likely have no idea what our life is like. We are just doing what we need to do. If an iPad is needed at a zoo to help her be able to focus on her surroundings, then so be it. If we could have the iPad switched off, we would!
  • Be patient. Obviously, we aren’t saints. There are days where my patience wavers and I just really wish things could be calm. But I’d say we do a remarkable job of keeping calm to help her feel safe. I will always stay by her side or give space when needed.
  • Ask anyway. I ask Amy constantly how she is. Tell her how much we love her. I tell her how valued, important, and amazing she is. Amy has proven so many times that she understands way more than some people give her credit for.
  • Get out and about. Get some fresh air, find those accessible places, and make memories together.
  • Lower expectations. Don’t expect to go to a musical therapy, or disco etc and for it to go swimmingly. Go prepared, accept when it isn’t working and smile through it. You can only do your best.
  • Look after yourself. If you don’t look after yourself, how can you look after someone else?

Is there anything you would add to the list?

Prevention is better than cure

I vividly remember bringing the last of our triplet’s home to join his identical twin and fraternal sister. It was such a huge relief to finally see our three gorgeous babies together again where they belonged!

Jacob stayed in hospital for six weeks (four more than Ben and Chloe) having been born 2 months premature. He has the most severe form of spina bifida which is known as myelomeningocele. Meaning his spinal cord and meninges were in a “sac” on his back. This couldn’t be closed until he grew bigger, so we had to play the dreaded waiting game


It was amazing to be doing something ‘hands on’

I remember sitting in SCBU with Jacob doing exercises given by the physio to help his feet which were turned inwards. It felt so good to be doing something “hands on” with him. After so much time was spent talking to him through the incubator. It is so hard to feel so distanced from your own baby. So, I was more than willing to do anything to help! This early intervention has meant he was able to be cast for splints when he was older without having any surgery.

Once his back was closed and a shunt put in to manage his hydrocephalus, he came home. And we were suddenly responsible for all his care. Despite my background as a nurse, this was really scary. I kept thinking “What if I get it wrong? What if I miss something important? How can I help?”.

We had brilliant support from community teams

Thankfully, we had brilliant support from community teams including nursing, physios, OT’s, dietician, GP etc. As Jacob grew and his needs changed, we would reassess and learn new activities to help him develop strength and prevent further disability. A big part of that was posture management.

All our family knows I am very particular about how Jacob is positioned. This has been the case since he was a baby and was fortunate to be loaned a set of foam rollers etc with Velcro. Much like Firefly’s “Playpak” which I didn’t know about at the time to do some exercises he would otherwise have found very difficult. I used these every day. Usually doing stretching in the morning and then supporting him to sit upright in the afternoons. Jacob had a Pavlik harness on for hip dysplasia. I was always very aware of keeping his pelvis in the best possible position. This was not always easy with two other babies who were also growing in strength and learning to crawl over to “help” with Jacob. But I really do believe early intervention is so important.

It was pretty scary to have a two-year-old in a big wheelchair

Due to all the work everyone had done with Jacob, he was able to get his first self-propelling wheelchair having just turned two! He called it “raa raa” after his favourite show at the time. He was amazing in it! And the wheelchair assessor told me he was the first child she’d worked with that showed such a natural ability to manoeuvre. This was probably because he had a tiny little self-propelling chair, like Firefly’s “Scooot”, that he used every day. It was pretty scary to have a two-year-old in a big wheelchair which could go much faster than I’d have liked! He was a little imp and used to scoot away on me constantly!

Now that he is seven, his OT has offered me her sympathy We received difficult news that Jacob has scoliosis and lordosis of his spine. She said out of all her families, I always come to mind when she thinks of keeping kids in the right position as much as possible. I’m not sure if that was true or she was saying it out of kindness. But it certainly helped my aching heart! It feels very unfair that he is facing this new complication, but that’s life sadly. We are waiting to see what his surgeons want to do. If anything, to help his spine straighten a little which should help him gain back some strength he has lost.

I’m not suggesting it’s a magic cure, but it can’t hurt and will likely help

In the meantime, all we can do is continue to make sure he is well seated in his wheelchair, “GoTo” seat or shower chair. He does sit on the sofa with us because he deserves to have those experiences. But I do make sure he is well positioned and not “flopping” to one side or the other. Looking back, I am so thankful to have had the experiences as a nurse. I was able to understand the importance of preventing further disability wherever possible. I’m not suggesting it’s a magic cure, but it can’t hurt and will likely help. It goes without saying but please ask your child’s team for individualised advice on anything you can do at home to help. Good luck and enjoy that time with your little one(s)!