Feeling Alone As An Additional Needs Parent.

I sat alone in a side room in the children’s hospital waiting on my son returning from his 16th general anaesthetic. In the silence of the room watching out the window to the busy street beneath I wondered if anyone knew I even existed. Did anyone care? 

The loneliness was overwhelming. 

I stood at the school gate quietly, all the other parents keeping their distance. Party invites being distributed, lots of chatter and excitement, but I wasn’t being included. I’m the parent of ‘that’ child. The one who is different, the one who plays alone and struggles to communicate. The child who doesn’t get the games others are playing and won’t join in with everyone else. 

The loneliness is emotional.

Back home everything is in full swing, as one child comes home screaming, throwing and destroying. Things get smashed, children screaming, dinner gets forgotten and burnt yet again. I feel helpless as I wasn’t with him all day so I couldn’t prevent any of it. I sent him and now he hates me. Behind closed doors no-one sees the pain from the weight of the heavy burden. 

The loneliness is exhausting. 

The fighting for services. To get someone, anyone, to listen. Find my child the help he needs. Or to push our way up never-ending waiting lists. The struggle to find hope, to support my child in any way possible. The constant phone calls, appointments, all the talking. Repeating the same thing to so many people just trying to get someone to help. 

The loneliness is overwhelming. 

But it can be broken. The loneliness can ease. While no-one was physically in that hospital room with me or standing beside me in the school playground. Or helping me holding my child with me as he struggled after holding it together all day at school or attending the meetings and appointments that fill my every week. They were with me in other ways. They understood. 

I used to feel lonely because I thought I was the only one going through this journey. Yet just along the road, in the next town, in the nearest city, out in the country and in the same school there were other parents whose child is different too. Other parents who know what it’s like to have a child who explodes after school. Or who doesn’t get that party invite and who are also fighting to get services and professional support. I didn’t know they existed because I let loneliness consume me. 

You are not alone.

Yes, it is lonely raising a child with additional needs and some struggles may be unique to my family But, that doesn’t mean others can’t understand and support. It’s about finding your posse, your gang, your support network who can walk beside you and cheer you on, whether that be in person or online. It’s about Googling support groups in your area, searching for social media groups relating to your child’s condition, or even just groups for carers. They are everywhere and when you find one where you feel at home it will be life changing. 

I can’t promise that you won’t feel lonely at times, but what I can promise is that others will be there and understand. A message, a text, or even just a funny meme sent in love might be all it takes to remind you that as hard as this is you really aren’t alone. 

When you feel lonely as an additional needs parent always remember that others do understand. We care and we are cheering you on right beside you. 

10 Ways To Get Out and Enjoy Spring

Little by little the days are getting long, lighter, maybe even warmer. Green shoots are pushing up through the earth and the first flowers of the year are here. Snowdrops and crocuses dazzling us with their beauty. Spring is coming!

If, like me, you find winter hard, with being stuck indoors most of the time and it being dark and miserable. Then you might be as excited as I am to see spring coming. After a couple of very hard years for us all, we need a bit of cheering up. We hope that this year might be the year that life can return to normal in so many ways. Our children will be feeling the same way too, and we know that a bit of sunshine, fresh air, and natural beauty can lift all our spirits. So, here are 10 ideas that might help as you try to get your children out into nature again.

You can find nature everywhere.

You don’t have to live in the country to get close to nature. Look for your local park, or if you, a family member, or a friend have a garden then you can explore there! Even a window box can be packed with beauty and life.

What can you see?

Look together for how many different flowers you can spot, and how many different types of bird. What else can you find? Are there insects out and about? Catkins in some of the trees? Look up at the clouds in the sky, what shapes can you see? Maybe take some photos.

Embrace the mud!

Accept that it’s going to be messy when they get out there. Put on wellies and old clothes so that it doesn’t matter if they get mucky. We know they will! But it will give them the freedom to explore without worrying about getting muddy. If they’ve got waterproofs use those and encourage them to splash in the puddles!

Get whatever exercise you can.

Depending on the additional needs of your children, use the opportunity of being outside to get some exercise. Maybe your local park has a children’s play area that you could visit, or some safe trees to climb. Perhaps you could take a ball to kick or throw. Or just walk around the paths, enjoying the fresh air of being outside.


Take a moment while your children are exploring to just stop and breathe. Take in a lungful of fresh air and slowly let it out. Feel some of the stresses and strains of the winter melt away as you focus on your breathing. When was the last time you did that? Feels refreshing, doesn’t it?

Look forward

Spring is a time of hope and expectation. What are you looking forward to this year? While you are out in the fresh air and your mood is lifted, what plans can you start to make? What might you think about changing this year? As you see the flowers opening up, feel the opportunities opening up inside of you too. Commit to making this a great year for you and your family.

Bring a little spring indoors.

Now there are rules about not picking wildflowers. But if you’ve got some snowdrops or crocus flowers in the garden, why not pick some and bring them indoors to brighten up your living space? Or plant some indoor plants and watch them grow.

Create a natural fiddles box

What items could you collect to make a natural spring fiddles/fidget box? Here’s an article I wrote for Firefly about a natural autumn fiddles/fidget box. Perhaps you could adapt some ideas and make a spring one! https://www.fireflyfriends.com/uk/blog/how-to-make-autumn-fidget-box/

Remember what you did and seen.

Take photos that you can look at the memories again. So, on a showery day when you’re stuck back indoors, get the paints or colouring pens out and get your children painting or drawing. They can recreate what they did when you went out and remembering what they saw. Are they excited about going out again?

Have adventures outdoors with friends.

If you had fun exploring outdoors together, why not meet up with some friends next time? Sharing the fun is great to do! And maybe you have friends that live near, explore somewhere that you haven’t visited yet! There are more adventures waiting for you!

I hope these ideas help you to enjoy the springtime with your family, as well as getting some benefit from it yourself. Let this spring put a ‘spring’ in your step!

Episode 1 – Out in the community with our kids with disabilities – Part 1

We are excited to be able to share a brilliant new podcast series called ‘2 Moms No Fluff – The uncensored truth about raising kids with disabilities.’ In the podcasts Alma Schneider and Iris Mehler explore issues they have faced as parents of kids with disabilities.  Alma (New Jersey) has a son with Prader Willi Syndrome, Autism and ADHD while Iris (Michigan, originally from Israel) has a daughter with Quadriplegic Cerebral Palsy who is non-verbal. Both Iris and Alma have over 20 years’ experience working with people with disabilities, which began prior to starting their families – so they have immense professional and personal experience.

In this podcast we share our experiences going out with our kids, and the reactions we sometimes get… This is the first part of a two segment episode.

What is Early Intervention and why is it so important?

Early intervention is the identification and provision of effective early support to children and young people who are at risk of poor outcomes. It incorporates social, educational, physical and mental health needs.

Preparing for the journey

There is so much that can be said about the world of early intervention. But the first thing I want to say is that it should come with a warning.  It is often so painfully difficult to get a need for intervention recognised and resourced.   You need to be resilient when battling for your child.  You may need to find courage to be outspoken, and conviction to articulate.  You’ll need to struggle through the times of despair and anguish, and muster energy and strength to persevere.  Self-doubt may even start to kick in when, after being challenged and refuted numerous times. You question whether your fight is legitimate and justified.

Being resilient

The most gruelling of fights for our family was our battle to secure interventional feeding therapy for my child. Who has oral-motor disorder and acute sensory processing difficulties, which lead to a condition called ‘avoidant and restrictive food intake disorder’. The feeling of being continually ignored and placated was utterly shattering. We endured a long battle to secure his early-years place at his specialist school. A school which provides in-house therapists and specialist interventions, which was so imperative to his development. We have undergone ongoing battles with the social care system to acquire respite care. So that he, his young brother, myself and my husband, can have an element of respite and practical help at home. 

In each situation it has felt like we have needed to demonstrate critical, dire circumstances, before our needs have been taken seriously.

Why early intervention is so important

The importance of early intervention should not be under-estimated. But sadly it is often the case that a child or young person fails to receive the interventional measures that they require.  These failings can often be attributed to funding, lack of diagnosis or recognition of need, resource issues, and untimely interventions.

The key part of the phrase is the word ‘early’.  Put simply, the earlier that a need is identified, and the sooner that an interventional measure is put in place. The greater the likelihood of a positive outcome. 

In a child’s formative years, the brain’s neural connections are being activated at an exponential rate. As a result of everything they are living; mentally, visually, physically, experientially.  Their experiences are having a direct impact on their rapidly developing brain architecture.  Thus, early interventional measures for a young person can inform and influence the future hardwiring of a child’s inner computer.  For an infant whose development is a cause for concern, early intervention can have a colossal impact on their physical health and cognitive progression. 

Similarly, during the teenage years, a person’s brain is learning to shift the emotional learning from the primitive system, towards the sophisticated frontal lobes. This evolutionary process is moulded by all the raw external influences it experiences.  Therefore, in the case of a mental health or social-emotional issue in older children and adolescents, interventional measures being implemented on a timely basis can have a profound effect on their trajectory into adulthood. 

Recognition and acknowledgement phase

The very first stage for each and every family is the recognition and acknowledgement phase.  Differences, disorders, and difficulties come in all shapes and sizes. And a parent must first identify, recognise, and act upon, their child’s presentation. Which can be a difficult and distressing process.  This can often lead to stages of denial, depression or anger, before our practical minds take over and we are ready to ask for help.  The critical path to early intervention can often be obstructed by the lack of a diagnosis and this obstacle can cause its own arduous difficulties.

Once ready to act, and furnished with evidence and fuelled by the desire to help our children, we move on to the stage of researching the best course of action. In some cases, this can be straight-forward, such as a physiotherapy for a physiological condition. But in other cases of mental health disorder, behavioural or communication problems, the interventional options are not so clear.  This stage can be the toughest time for any parent, as our child’s condition often deteriorates or becomes more omni-present, while the ongoing efforts to source help to ‘fix’ it seems to be futile.

All too often we must fight to be heard.  Whether it is to obtain a diagnosis in order to be included in a care pathway, or to be accepted for an intervention that has a long waiting list, or that has strict acceptance criteria. The most upsetting scenarios is where a child is not considered to be ‘serious enough’ to be accepted for treatment or intervention. In this country it is a sad fact that for specialist or costly interventions you often need to be ‘in crisis’ or ‘critical’ to be given any resource from the system.

My advice to parents and carers who are seeking early intervention:

  • Gather evidence: Keep diaries, records, and photographic/video evidence.  Insist on written clinic letters following each appointment, and statements from educational settings.  Make notes of all phone conversations and appointments, and keep a timeline of everything.
  • Know your statutory rights. Find out national and local timeframes such as Referral to Treatment (RTT), maximum waiting times, and any requirements for meeting treatment criteria.  Acquaint yourself with your rights in the healthcare, social care and educational systems. This can be asking for referrals, second opinions, specialist consultations.
  • Ask for help: Take a friend or family member to appointments.  Tap into charities that have an abundance of material and resource to help you. And who may even be able to represent you at meetings. Persevere where progress is slow, even if that means calling and emailing frequently. Do not be afraid of being a nuisance!
  • Fortify yourself with as much emotional strength and support as you can. Surround yourself with positive people that love, support, and understand you and your child. Do not be afraid to ask for help.  Be prepared for a battle but be assured that it will be worth it once you come out the other side.

The Importance of Physical Touch and Compassionate Care

Though we are all different and complex in our own ways, we human beings have a few simple needs in common: the need for community, the need for safety, and the need for personal interaction. Those in more vulnerable groups like the elderly, disabled, or medically compromised often feel these needs more strongly than other people do. Because they are dependent on caregivers to obtain them on their behalf. I want to talk about the need for personal interaction because I feel this is the highest of all needs.

Physical interaction, expressed as physical touch or eye gaze, is important for several reasons. From a biological standpoint, every time two people look directly at each other or physically touch (could be as simple as holding hands), oxytocin is released. What is oxytocin and what does it do in the body?

What is Oxytocin and what does it do?

Oxytocin is a hormone released by the pituitary gland. When it releases into the body, it does a number of amazing things! Oxytocin is shown in many situations to have many positive effects. When mothers and newborn babies gaze directly at each other oxytocin is released. A bond begins to form between them. Studies show that when people with PTSD, experience the introduction of oxytocin has been reported to lower their cortisol levels. The “fight or flight” hormone responsible for the feeling of needing to escape a harmful situation. Which gives patients a sense of calm and decreased insecurity. In elderly patients, compassionate care from their doctors in the form of a warm handshake and direct eye contact, has been shown to immediately reduce blood pressure and heart rate. And in therapeutic settings, holding someone’s hand has been reported to reduce stress and anxiety levels.

The effects of giving a small amount of physical contact to someone can make a big difference in those being cared for! Doctors and nurses are steadily increasing their practice of compassionate care, and caregivers can take a page from their book.

How to connect with others

Many of the ways you can connect with those you care for are very simple! When you are speaking to someone, look directly at them, on their level. If the person is in a wheelchair, immobile, or a small child, move to their eye level. If it is appropriate, hold the person’s hand or put a hand on their shoulder. And if you know the person very well, there is no better immediate help than a hug. In other settings, playing music and dancing with a person casually while holding onto their hands can be an amazing therapy.

When you show care to someone by looking at them, speaking in a gentle voice, and giving a small amount of physical contact, you are communicating clearly to the person that you are present and interested in them. There is no substitute for the connection that can be made, and the care conveyed through this simple practice.

Reaching out to your employer for support

I am fortunate that my son Joey is so well thought of by my family, friends, and colleagues. I said in my last article about reaching out. This one is about challenging your energy in the right areas. Joey is blessed that the people who hear his story reach out and say, ‘hey how can I help’, ‘what can I do to make life that little bit easier for you’.

Having an understanding employer

The company that I work for have supported me through many difficult times. When my HR manager, Becky reached out to me and said she wanted to help fundraise for me and Joey I was thrilled. My work has been flexible with me as they understand that I need to attend multi-disciplinary meetings, hospital appointments, meetings about Joey’s progress in school and dealing with the exhaustion of caring for Joey and working full time.

Having a strong support network

They also know I have challenges being a dad that has no government support and is often lost in the system. But they don’t ignore me, they are there to support me and that means the world to me and my wife Ceri (Joey’s step mum). My line manager has also been there as great support and the owners of the business have just been brilliant. I couldn’t wish for a better professional support network. They have been there for me every step of the way. So, please do reach out to your employer and discuss the journey you are on. They won’t know the difficulties if they aren’t aware of them. As the saying goes, a problem shared is a problem halved.

Becky has said to me despite her own health issues that she wants to help Joey. It blows my mind that even someone going through a hard time wants to help and support Joey, it is just amazing. It just goes to show that there are some truly wonderful people in the world. So, Becky is running two half marathons to help me raise money for Joey’s Day to day needs, equipment, and sensory play.

A problem shared, is a problem halved.

The main takeaway from this blog, it is that if you are working and finding things difficult personally, reach out and speak to your employer. Also don’t be afraid to ask family and friends for help. They aren’t mind readers and will be unable to help if you don’t share your troubles. And then, if you are as fortunate as me, someone like Becky will step in. They will give you hope about how great people can be. It is, of course frustrating when the support needed for Joey isn’t fully available. But challenging my energy into positive fundraising is so more worthwhile. 

How to help your child become more independent

The ultimate goal for any child who has physical, cognitive or communication difficulties, is for them to be as independent as possible.  How can you help your child get there? There are some concepts to keep in mind and small changes that you can implement immediately.

Studies show that active learning is the best way for kids to learn

As a parent, it’s important to let your child explore their surroundings and experience a variety of experiences. That can include a trip to the park, the supermarket, or the beach. A child sees or feels something, processes what they’re seeing, and they react. If a parent or caretaker assumes any of these roles, the baby has not learned.  All children learn through experiences.

Sensory motor is the first area of the brain to develop

All children learn through their 6 senses (taste, vision, hearing, smell, touch, and kinesthetic).  They visually track and seek out toys and people, touch and feel toys, experience different textures, all while they listen and react to different sounds around them.  Let your child have many experiences to stimulate their brain. 

Container syndrome is a real thing

A newborn spends a lot of time on their back, in a swing, in a bouncy seat, in a bassinet……It’s important that a child experiences the world from different angles.  For a newborn, that means on the floor, on their belly, but also on their side. As a newborn, a baby’s cranium is soft and if a baby is in one position too much of the time, there is a chance of developing torticollis. 

If your toddler or child has difficulty with movement, get creative with ways to change their position.  There are swings, adaptive seats, adaptive bikes, bungee cords, and harnesses to help with weight bearing.  Your child will experience the world in an entirely different way.

Dr. Sharon Galitzer

Pediatric Physical Therapist

Reaching Out For Help

Being the parent of a child with additional needs, while trying keep on top of everything can be very difficult. I have recently been involved in setting up a ‘lads and dads’ group. As talking to others, reaching out and getting support is so important in anyone’s life. Unfortunately, I don’t get any financial support, so I must do what I can to fundraise for his day-to-day needs . Sometimes this is hard, but I’m lucky to have a group of friends that I can lean on for support.

Challenges I face

Having a child with severe disabilities comes with lots of equipment. Boxes of medicines, feeds, incontinence pads and much more that is required, to make sure that their life is a fulfilled one. The challenge I faced was that my house was becoming more and more cluttered with these items. It was difficult to find space where I could put all the things that I needed to for my son Joey. Ideally, I needed a storage unit that could house all of Joeys equipment.

Like I said before, sadly I don’t get financial assistance through any of my son’s benefits. So, I reached out to a charity, Tree of Hope and they helped me fund the storage shed! I managed to acquire one that fit perfectly at the side of our house. However, I struggled finding the time between working full-time and being Joey’s carer to build the shed.

Reaching out for help

So, I turned to the lads and dads’ group. A group of people of which I am a proud committee member, stepped up and said, “don’t worry we will help”. So, 3 guys, who little more than 2 years ago were total strangers. Came around and built this for me in their spare time, knowing that it would be life changing for our family. It may sound silly that a storage unit could be life changing… but for us, it isn’t. It has freed up room in the house and in my son’s room.

The main takeaway point from this, is please don’t be afraid to reach out. If there are local support groups in your area, please contact them. And if there isn’t, be a leading force in your community and set up a group for people to help and support each other no matter what you’re going through. I am lucky to be part of such a group who look out for me, my family, and my son. And I know they will be there to help if I need anything in the future.