Appointment anxiety

Half-term is upon us – not entirely sure how that came round so quickly but here we are.

As is always the case with the Dude, he has taken all the changes that the last couple of months have brought in his stride.

I do want to know however who is the monster who thinks it is acceptable to schedule in multiple hospital/clinic appointments and/or reviews in the space of two weeks just as he is getting settled into a new school routine?!

Seriously people, the entire summer passed with barely a whisper from the appointments office and yet as soon as term began…

One of the appointments I dread more than any other are his spinal reviews.

The Dude developed scoliosis, at 4 years old. Like so many children with his neuromuscular issues, the weight of the head is just too much for the muscles of the spine to support so the spine gradually curves over to the side.

We know surgery is the only way to ensure that the spine is stabilised and prevented from curving to the point that it crushes his heart and lungs, but that is not something anyone wants for their child.

This time, we’re seeing his surgeon.

Thanks to covid-19 it’s been A While since we’ve seen him, and he is concerned that the chaps spine may be reaching a level of curvature where difficult decisions around surgery can’t be postponed.

It’s the appointment I have feared for almost 7 years. I spent much of the afternoon sitting in the waiting room while the Dude and his Dad are down in x-ray, trying to hold it together.

I have no idea why scoliosis terrifies me so much – after all, we have lived with uncontrollable, life-threatening epilepsy since he was a matter of weeks old, and yet there is something so insidious about the way a curved spine will slowly continue to worsen, gradually causing my child increasing pain and disability, that eats away at me.

And is so often the case with these amazing little people, the appointment went better than we could ever have imagined – a combination of excellent postural support from his wheelchair, a superb sleep system than he actually LIKES (I kid ye not), and a dynamic orthotic suit that supports his spine means that his scoliosis is relatively stable… surgery can wait for a bit longer.

Fingers crossed we can keep him well enough that surgery can wait until growth rods are no longer required and he can have a single surgery to fuse his spine and sort this scoliosis once and for all. As ever, hope is the thing we hold on to, while our amazing child continues to shine.

Time to process – Complex Health parents & stress

Sometimes you can’t live in the moment. What if it’s an especially traumatic and challenging moment?

How do you recover from stressful events? How do you navigate them whilst they are happening?

Yesterday Amy was in pain with some acute skin problems. The result of this was that she was emotionally and physically distressed.

When she is distressed she rips at her hair, she pinches and kicks those around her.

She is impossible to console in those moments. All you can do is remain calm, and patient, and try your best to prevent injury.

Thankfully these moments happen less than they used to, but at the time I can feel my stress levels going up and up.

My jaw tightens and clenches, my muscles tense, and my heart rate increases.

In that moment all you can do is keep breathing, and remind yourself – this is how she communicates pain, this moment will pass.

Recently, Amy has had a few ambulances due to respiratory issues.

In those moments she is blue, struggling to breathe, retching, and looking lifeless. Adrenaline kicks in and I reposition her, check her obs, suction her, reassure her, and explain what I am doing.

I call for the ambulance. My chest is tight, my legs are weak. Outside I am calm. Internally I am a mess. Just get through this moment. The paramedics will be here soon, she will be fine, and we will all be fine.

In the ambulance my back twinges as I struggle to reposition my panicking child.

She is on oxygen and awake now, but highly distressed. Staff keep telling me to keep her upright, and I explain again that this isn’t possible with Amy.

The blue lights now are on to get us there faster. We’ll be there soon, this is temporary, this is about her, not me.

Continue to try and comfort her and stop her from injuring herself.

In the hospital I remain calm as I explain what has happened for the third, maybe fourth time.

I reel off her list of medications again, for the third, maybe fourth time. This is the process – don’t fight it. Just be patient and explain it. You’ll be home before you know it, hopefully.

Fast Forward a week.

Things are now much better health-wise. Life-threatening problems are now replaced with usual mundane daily problems like replacing faulty medical equipment, chasing meds from the hospital, and finding space to store tube feeding supplies.

We are on a nice family day out. The Autumn air is fresh, the sun is shining, Amy is in a good mood.

Immediately we are faced with “what’s wrong with her? Why is she in that chair?”.

I am grateful people ask – it’s better than staring, or ignoring. But my heart sinks a little. Why do we need to stand out? Why can’t we just have a friendly interaction that isn’t centered around Amy’s disability?

Inwardly I yearn to just be normal, to be boring even. What a novelty boring or normal is. I breathe through it and put on my friendly happy voice and explain once again that cerebral palsy is how the brain controls muscles and so on.

I make a call to chase some meds. I pray internally that the receptionist speaks kindly to me.

I sense the frustration in her voice as this is the third time I have called in a week. I remind myself to breathe and stay calm.

Don’t lose credibility and cry. “Why can’t you go to the GP for these meds?” I answer for the third time in a week.

I fight the urge to be sarcastic or emotional and explain that these meds are hospital only. I try to make polite small talk.

It goes ignored. I tell myself – maybe she’s having a really bad day or is extremely busy – don’t take it personally, don’t let it affect your day. 

In just writing this I feel myself tighten up and feel angry.

Sometimes it doesn’t feel fair to have to internalize so much sadness and frustration.

For now, in this quiet moment, I can process it all. I can take some time to enjoy a hot coffee, knowing we are home and that all is well.

I can enjoy that my phone isn’t ringing, all of my loved ones are safe and well, and I can be proud that we all made it through.

Sometimes you can’t live in the moment. Sometimes you have to endure the moment knowing that better moments are to follow.

Sometimes those moments you endured will catch up with you and eat away at you.

What do you do to deal with this?

Personally, I have anxiety medication, and counseling, and try in my spare time to get on walks and to the gym.

Exercising definitely impacts your mental health. It can lower your stress hormones and help you release feel good chemicals.

Some days I’m too fed up and exhausted for that – and that’s okay too. You have to listen to your body, and when time permits – give yourself chance to heal.

It sounds cheesy but self care really is so important. It’s harder to get in our lives as it can be so unpredictable. But any moment you can, try and do something for yourself and really savour and appreciate that moment.

If you are struggling – please go and see your GP. Talk to someone. Don’t just wallow and suffer.

Life is challenging for everyone, but when you have a child with complex health it is a constant concern over their health, and navigating the often difficult system that surrounds them.

Sibling Relationships

Sibling relationships are important.

I am the fifth child out of six children. I’ve always been very big on my siblings. And I still am yet to this day. I had the best childhood just being around them.

Fast forward to today. I get to watch my children share a bond as siblings.

It’s my most favorite thing to see. I am the mother of three children one of which has special needs. He’s also my only boy.

He and his sisters share a special bond. They know what he wants without him saying a word.

They’re always spending time with him and checking on him when he’s too quiet.

They make sure they have conversations with him and that his presence doesn’t go unnoticed. Even their friends know and acknowledge him when they’re around.

I think my most favorite part about their relationship is how excited they get when he does something. The things that seem small to others is so big to them especially when he does it.

Recently they had an eLearning day, and my oldest daughter was helping him with an assignment.

Throughout the assignment, he had his moments, but she kept assisting him. When they got to the last part of the assignment, he wanted to do it. His sister was so excited, and I caught it all on video.

I love recording random moments with them. Seeing them love on each other makes my heart smile.

Another thing I love about them is that they’re always thinking of him. Even on their birthdays they’ll choose what he loves just to see him happy.

When were out in stores if they see something that he likes they make sure to get it.

I admire their relationship so much because I’ve heard so many families talk about how their other children don’t acknowledge their children that have special needs.

I consider myself one of the lucky ones because my son has sisters that really care about him.

Sisters that want to include him in their daily lives. Sisters that understand that we love them just as much as we love him it’s just that he requires extra care.

How about an ‘Alternative Halloween’ This Year?

Halloween literally means the evening before All Hallows Day or All Saint’s Day, a day festival celebrated on the 1st November each year.

The name Halloween is a shortened version of All Hallows’ Evening which is celebrated on 31st October.

The origin and meaning of the festival of Halloween is derived from ancient Celtic harvest rituals, but today Halloween is a time of the year that many children really look forward to; a time for fantasy and fun, a time for dressing up and scary stories, a time for ‘trick or treat’ adventures and lots of sweets! 

The advertising and marketing around Halloween seems to ramp up to greater and greater heights every year, with major supermarkets dedicating whole isles, sometimes several of them, to their Halloween merchandise.

Advertising supports this with lots of TV adverts featuring images of ghosts, ghouls, pumpkins, and spiders’ webs. Then there’s the BBC Strictly Come Dancing ‘Halloween Special’! 

While Halloween can be a fun time of year for many children, it can be a really difficult time for some, including many children with additional needs.

For them it can be a confusing, anxiety inducing, or even utterly terrifying time.

But it doesn’t have to be like that; if we stop for a moment to think about the things they might find hard and how to put alternative things in place to help them, they can safely join in with some fun too but in an alternative way.

So, what are some of the things about Halloween that children with additional needs can find particularly hard, and what can we offer them in our ‘Alternative Halloween’ instead: 

1. Stranger Danger? 

We tell children all year not to talk to strangers, then on one night it’s suddenly fine to go around knocking on strangers’ doors. This can be hugely difficult for some neurodiverse children, for example, who can be very literal in their understanding and so can be very confused by this.

Why is it OK to speak to strangers today but it wasn’t yesterday? What has changed? What will the rules be tomorrow? Why? 

2. Fake or Real? 

The more garish dressing up can be genuinely terrifying for a child that struggles to tell the difference between fake and real. Increasingly, we’re seeing dressing up outfits becoming more realistic with fake gore and movie quality makeup that makes people look truly terrifying.

When that line is crossed for a child that believes that the person really has hideous injuries or has been turned into something truly evil, theirs is the terror that is real. Cue massive meltdowns, sleepless nights, and recurring anxiety. 

3. I’m Scared Enough Already! 

Talking about anxiety, some children with ongoing anxiety issues can find the whole business of going out ‘trick or treating’ very upsetting in itself. Surprises, scares, people jumping out, can all be terrifying.

If it’s hard to deal with the day-to-day anxiety that they face about going out on a regular day, ramp this up multiple times when Halloween is involved! 

4. What About Me? 

Then there are the kids with additional needs or disabilities that don’t get invited to the parties or to go out ‘trick or treating’ because they are viewed as ‘different’ (usually by other parents, rather than the other children). Here’s yet another opportunity for them to feel left out, rejected, and uninvited because they haven’t been included… yet again. 

5. Parent Problems! 

It’s not just the kids. Parents of children with e.g. ADHD may not be grateful for their children being given loads of sugary colourful sweets when they are then up all night with a hyperactive sugar fueled child! 

There are loads of other reasons beside these to avoid Halloween, but there are also many ways to offer an alternative to Halloween for all children, but especially for children with additional needs and their families so that they can join in too; here’s 10 ideas:  

10 Helpful ‘Alternative Halloween’ Ideas 

  1. Prepare them in advance, giving them a visual timetable of what is going to happen, how and when. This will help them to be less anxious about what might happen. 
  1. ‘Prime’ some friendly neighbours who are known to the children and that you can visit safely knowing that they won’t do anything scary or surprising. They can, for example, have their outdoor lights on and a bucket of packets of sweets or snacks ready for the children to enjoy safely. Maybe the children could sing their favourite song as a ‘thank you’. 
  1. If you are near the countryside, or a park, go for an autumn walk (or roll, make sure your route is accessible), collecting conkers and fir cones, picking blackberries, kicking or throwing up the fallen leaves, looking up at the stars. Remind the children to bring torches with them and have some hot chocolate and biscuits ready for when you get back home. 

4. Provide ear defenders for children with sensitivity to loud noise so that any unexpected noises, fireworks etc. are less of a problem. 

  1. Choose alternative, ‘bright and light’ outfits. It’s more about the dressing up than who can look the most terrifying and there are plenty of non-scary, positive, options to choose from. 
  1. With this in mind, maybe host an alternative ‘light party’, a counter-cultural celebration of things that are bright, light, colourful and good. Loads more variety with the dressing up, just as much fun, and no scares! Who can dress up in the brightest costume?! 
  1. Choose sugar free sweets, or better yet try some healthier snacks themed around Halloween (satsumas as ‘mini pumpkins’ with a smiley face for example). 
  1. Maybe even have an ‘autumn indoor picnic’ where you spread out some blankets and enjoy a feast together, or if the weather is good an autumn barbeque with lots of lighting to keep it bright. 

9. If you are hosting a light party or autumn picnic/barbeque, think about who might be left out and make sure you remember to invite them. 

  1. Have fun but keep checking on how each child is feeling. If they are struggling, have something that they love doing ready so that they can easily try that and have fun in a different way (carving pumpkins – they don’t have to be scary, making pumpkin mini-pies, decorating a jar to put a battery night-light in, a bubble machine, apple bobbing, toasting marshmallows…)And have a ‘safe space’ they can access if they just need a rest from all of the activities, fill it with cozy blankets, cushions, and provide soft lighting. 

I hope that ‘Alternative Halloween’ is a great success for you all this year, especially for those of you looking after children with additional needs! 

Five ways to support Additional Needs siblings, an overlooked group

This article is written by Mark Arnold’s daughter, Phoebe, who shares her experience of growing up as an additional needs sibling to her brother, James, as well as offering learnings for us all…

Growing up I didn’t often see a family unit similar to my own; from a young age I was a carer for my younger brother, James, who was diagnosed as Autistic and with Learning Difficulties when he was 2 ½ and I was 5.

By the time I was a teenager, James was still non-verbal and needed around-the-clock care.

As a young person this was my ‘normal’, however, it came with its challenges as I navigated my teenage years with a disabled brother.

This article shares five ways in which people who parent, care for, or work with, children and young people can help to support the siblings of children and young people with additional needs.

1. Notice

Growing a good relationship with the young person helps to keep useful communication open.

Encouraging this allows siblings and parents to discuss if anything has happened during the week, or the night before, and parents can be on the lookout for any potential behaviour changes or if the young person is ‘out of sorts’.

Young people that are in a family unit with a sibling with additional needs also have an increased chance of having difficulties with their mental health due to their intense home lives.

Parents and young people can work together in understanding what would work best to support them well (see: 4. ‘Offer Support’ later, for example).

2. Encourage

It is important to encourage siblings of children and young people with additional needs to think about how they respond to situations. For example, acknowledging that they may get frustrated with their sibling, but then encouraging them to exercise patience and kindness.

Sometimes the family unit prioritises their child with additional needs due to their significant needs, which can lead to the siblings lacking attention from parents.

The consequences of this can show up in different ways, like looking for additional and perhaps inappropriate attention elsewhere or having issues with control.

A way to manage this is to provide encouragement and appropriate attention and to understand that if there is a flare-up in behaviour then there is usually a cause such as something going on relating to their sibling, or that they are feeling neglected.

3. Listen

When telling someone their sibling has additional needs, young people can get awkward, and parents and carers might not know how they can help. It is essential to try and learn if the young person is comfortable talking about their sibling with other people or not.

Typically, for a young person with a sibling with additional needs, it can be normal to talk about their brother or sister at home, so helping them to start this conversation both at home and in other settings can be very encouraging to the young person.

This is a valuable conversation to have on a regular basis, as it gives young people an opportunity to safely discuss how they are feeling.

Siblings often feel they cannot talk to their parents about issues in their lives because they do not want to put anything more on their parent’s already overloaded plate.

Helping siblings to know that it’s OK to talk, particularly in stressful times for both them and their families, is important.

4. Practical support

Another way that parents and carers can support siblings of children and young people with additional needs is by identifying a safe space for them to come and use as a quiet environment for e.g. completing homework.

This could be at a friend or family members house, a library, or some schools offer homework clubs.

For these safe spaces, understanding and meeting siblings’ basic needs is crucial, such as supporting the young person by providing a snack if they have missed a meal, or a quiet place to relax or rest.

Also, it is helpful to be aware of resources to direct young people to, such as counselling, sibling groups, or respite care. This can be done effectively, without stepping on the toes of the parents, by working together to meet the needs of the young person.

It is great to connect families with children and young people with additional needs together, so creating opportunities for families to find those networks, share teas and coffees, or create other activities as a great way to support all of their families, including siblings.

A great support network for siblings is ‘SIBS’:

An organisation that helps set up additional needs family networks is ‘Take 5 and Chat’

5. Training

Growing up I found a church youth group where I could have time away from home in a ‘safe space’, which acted as respite for me.

During my teenage years, I had the opportunity to serve and get a break from my caring responsibilities at home when attending youth groups.

The youth groups provided respite from my brother, but there were times when my peers that had additional needs experienced over stimulation and sensory overload resulting in them getting overwhelmed and distressed.

My knowledge and experience of additional needs meant I ended up providing support for a peer due to our youth leaders lacking additional needs training.

This took away from the respite aspect of church and led to me going from being a young carer at home to having similar expectations for my peer at church.

Youth leaders having a basic level of additional needs training makes sure that youth groups can include children of all needs and abilities.

If siblings are in the same youth group as their brother or sister who has additional needs, then the sibling may be happy to help with their support and care, but sometimes they will want to focus on doing their own thing.

Ensuring that the young person is not solely responsible for their sibling with additional needs while at youth group is useful as it allows them to make their own choices about their caring responsibilities.

Find out about additional needs training here:

I hope these five ideas may help in supporting the siblings of children with additional needs, however, they may have ideas and strategies themselves that are much more effective for them.

Start opening up those conversations, siblings can really benefit from extra support but feel like they are not entitled to it because they are not the sibling with additional needs.

Encouragement goes a long way so don’t be afraid to start that conversation!

Phoebe Arnold

I wear green for Jaylen

My favorite color has always been purple until I had my son. And its funny that purple still has meaning in my life as well. 

At the age of one my son was diagnosed with cerebral palsy.

There are several different types of cerebral palsy.

My son has hemiplegia which only affects one side of his body and in his case, it’s the right side.

He’s still able to do a lot of things but there are some limitations. He always amazes me when he does the things they say he wouldn’t do. 

During his first year of life, he mostly laid around.

Then when I had my daughter and she started accomplishing her milestones. And there he was trying to do them too.

I remember when he started trying to crawl.

He was three years old. I was staying in an apartment. I couldn’t believe what I was seeing.

Even today I love seeing him crawl. And I truly believe that one day he will walk. 

Now he does so much more than crawl.

He’s able to climb up and downstairs. Drink from a sippy cup which is huge because he’s been a tubie all his life due to aspiration to the lungs when he drinks by mouth.

After a swallow study he was approved to drink by mouth because it no longer showed liquids going into his lungs.

And this is very common in children with cerebral palsy. 

Green became my favorite color when I found out it was the color that represented cerebral palsy.

I love wearing green for Jaylen. I also wear purple for Jaylen for epilepsy and even blue for autism.

But his very first diagnosis was cerebral palsy. We are very big on green in my house. 

Having a child with cerebral palsy has taught me so much.

My son is my most informative teacher and he doesn’t teach me with words. He’s unable to talk. He taught me through courage, strength and most importantly unconditional love.

You know how they say actions speak louder than words?

Well, that saying is true because although I never heard him say he loves me I know he does.  

The worry of a limited diet

I have a few big fears as a special needs parent: 

What will happen if I die? What will my child do when she finishes her education?

What if my child gets ill and I don’t realise because of her communication difficulties?

How do I make sure my child keeps safe when they are so vulnerable?

And what on earth will I do if the frozen food shop near me stops selling their nuggets?

That last one is seriously one of my biggest worries. Why?

Well because that one brand of nuggets is the ONLY thing my daughter will eat for breakfast and lunch every single day.

Even then, unfortunately, she doesn’t even eat the full nugget just the batter coating.

Honestly, that’s all she eats!

Dinner is the only meal she has anything different and then it’s just one brand of pie of which she only eats the soft pastry and nothing more.

On a good day, we might get a spoonful of baked beans but never any other vegetables or fruit or bread or meat of any description.

It’s not for want of trying I can assure you.

Her twin brother eats almost anything from pork stir fry to chicken curry to broccoli, kiwi fruit and anything else put in front of him.

My cupboards and fridge and freezer are full of a full array of delicious healthy foods that she’ll happily put in the supermarket trolley or even cook…but never ever eat. 

Of course, I worry about her diet so much. I worry about how it will affect her growth, her brain development and her bodily functions.

I worry how it will limit her life experiences and isolate her.

Most of all I worry that it will affect her health and her immune system. 

Over the last thirteen years I have tried everything from bribery, reward charts and involving her in the preparation and cooking.

None of it made a difference in any way. 

Eating simply causes her severe anxiety.

She craves consistency, predictability and understanding.

What many just dismiss as ‘fussy eating’ is anything but.

In fact, her limited diet is due to severe sensory issues, heightened anxiety and the rigid thinking that so often accompanies autism.

Pressurising her to eat something else, or even worse making a different brand and ‘pretending’ it’s her safe one, only makes everything worse. 

Incredibly her recent blood tests came back normal and she’s growing, developing and remaining as healthy as her peers.

Her bodily functions work perfectly and accidentally she’s doing well. 

So despite my worries I readily and willing cook those nuggets yet again praying that the company never decide to change the recipe, or even worse, discontinue making them.  

I allow her to eat where she’s comfortable and we never force her to eat at the table surrounded by smells, colours and noise that overloads her senses.

I listen to her, respect her choices and let her know that if she ever wants to try anything else then she’s free to do so.

Maybe one day she will.

Until then I pray that battered nuggets will always be available when we need them.