Any parent that decides to take on the task of traveling knows how tough it is.

Kids have so much stuff!

Combine that with all the things they need for entertainment during the road trip or flight, throw in headache meds for you and headphones for all to help curb the “Are we there yet?” question every 5 minutes.

It is EXHAUSTING!

Now, imagine traveling halfway across the country with a special needs child and all their “things” for 3 full weeks.

It’s a monumental task in and of itself.

The planning ahead isn’t for the faint of heart.

Many special needs parents just don’t do it.

It’s a huge undertaking and takes weeks of planning, not to mention the risk involved leaving all their regular doctors in case of an emergency.

We have found that we are happier when we get family vacations or we travel.

It’s very stressful leading up to it and we always have a contingency plan for emergencies but we come home feeling refreshed.

We have been to visit family in Oklahoma several times, travelled to Virginia Beach and most recently we travelled to Cleveland, Ohio for intensive therapy.

We knew this therapy could be life changing so we began planning 4 months before.

I am no expert but I do have some tips and tricks I have learned along the way.

List, list, list!!!!!

Use lists to keep track of every possible item you may or may not bring.

Narrow things down as you pack but for peace of mind, write it down.

If you are driving:

Rent a roof rack if possible and if not, use vacuum bags to make clothing smaller.

Pretend you are an expert at Tetris and use every available inch.

If there is space, I find something to put in it.

Overpack entertainment for the car

Pack overnight bags if you are staying overnight so you don’t have to take everything in.

Pack extra supplies (diapers, chucks, wipes, clothes) in a small bag or in your overnight bag so it’s accessible.

Order your supplies about a week ahead of time and keep them in the box to load up.

I actually opened the box, took out the filler paper and found more space for other supplies in it. 

If you are flying:

Travel on the plane with the least amount of baggage possible.

Trust me, having hands free is worth every penny of checking your bag.

Have a small bag of emergency supplies, all meds and entertainment.

Ship supplies to your destination if possible.

We have done both, we shipped supplies ahead of time and we had a suitcase dedicated to supplies.

It’s much easier going to and from the airport with less in your hands.

Lastly, don’t be afraid.

It may be daunting at first and there will be hiccups but just because your child has special needs, doesn’t mean you should skip those important family vacations.

This week was the beginning of Joseph’s journey into education and into the big wide world without us. 

Having additional needs means that he is eligible to receive 15 government funded hours a week during term time, within a childcare setting. 

When I was first told about the funding over 12 months ago from the portage service, I was very reluctant to put Joseph into child care so young. 

Before having Joseph, I myself had worked as an early years child care practitioner for many years.

This only added to my worries as I am aware of some of the less than ideal situations/issues that go on within nursery settings. 

With the level of care and medical intervention etc that he needs, I couldn’t fathom how it would be possible for him to be monitored as closely as he requires in such a setting. 

Thankfully we learned of a special needs school and nursery not too far away that seemed like it could be a good fit.

With a nurse on site for added reassurance, a sensory room and hydrotherapy pool, it seemed absolutely perfect. 

It was eventually agreed that Joseph would have a 1:1 with him during nursery hours, provided by the continuing care team that provide our respite package.

This was such a huge relief knowing that he would be closely monitored and supported by people that he knows and that know him so well. 

I began to get excited then as I know what an inquisitive little boy he is and could imagine all the ways in which the experience would benefit him and help him to reach his full potential. 

We fell in love with the place as soon as we visited for a tour, so I was over the moon when Joseph was offered a place. 

For a few months leading up to his start date we spoke lots about nursery in preparation. 

I was unsure how Joseph would react to being in such a busy environment without me around after spending over a year mostly at home with just me and his Dad.

Aside from his regular carers and a few therapy home visits/virtual sessions.

It had been a long time since he had seen other adults to interact with and even longer since he had been around any other children. 

As I packed up what felt like half of the house on his first day (he certainly doesn’t travel light), I couldn’t help but feel a tinge of sadness that the days of having him all to myself were now behind us and he was about to start this completely new chapter, separate from me. 

I couldn’t help but feel like we hadn’t had enough time.

Although I am more than ready to gain some ‘me time’ and my own independence back, I secretly wished for one more day.

If this was the case though, parents would never let go.

There’s never enough time is there?

So off we went into the unknown and I reminded myself what a confident, brave, curious and resilient boy he has become and the anxiety eased. 

As soon as we arrived, so many friendly faces keenly greeted us and I knew instantly that he would be right at home there. 

Joseph has done 2 full days, straight in at the deep end, I didn’t want to give him chance to worry about me leaving by going in and out or alerting him to the fact that I was going, so I snuck out once he was settled. 

I was so pleased to hear of how amazing he had done from the teachers and his carers.

They described what he had been up to and everything was completely true to his character, indicating that he felt comfortable and confident enough to explore. 

When I think back to how tiny and fragile he was in his NICU incubator, unresponsive and wired up to machines, and us not even knowing if he would make it through each day.

I am unbelievably proud of every hurdle he has overcome in such a short time and I can’t wait to see the mountains he moves in the next 2 years. 

My Mum used to say to me about parenting “blink and you’ll miss it” and I never truly understood until I had Joseph. They grow so fast. 

My promise to him is that I will cherish every minute, hold him tight as often as I can and soak in every little bit of him, enjoying each stage as he develops and changes. 

Now that the first week is out of the way, I’m very much looking forward to seeing how far his nursery journey takes him, watching him achieve and thrive. 

April is Autism Awareness Month, and for those of us who have kids on the spectrum, there is a term that we’re all too familiar with- eloping.

Eloping means wandering off, bolting, escaping, or running away.

I’ve always disliked that term because I associate “eloping” with getting married, which is a joyful and happy occasion.

There is nothing joyful or happy about this type of behavior.

Eloping isn’t exclusive to kids on the spectrum, but it seems to be especially prevalent in children with autism.

Our daughter Lilly is no exception- she’s a wanderer.

Children and adults who engage in this behavior will wander off or bolt for a variety of reasons; seeking out a preferred place, trying to avoid something that makes them anxious or uncomfortable, or they may run off spontaneously during a meltdown.

When you have a child with a tendency to wander, you’re in a constant state of hypervigilance.

Whenever we go somewhere unfamiliar, I’m constantly scoping out our surroundings for dangerous areas such as busy streets or water bodies.

I plan ahead as much as I can, looking at the location’s website and checking out the area on Google streets.

Lilly has attempted to escape from our home numerous times, and so far, our trusty chain locks have stopped her from getting too far.

Outside the house, it’s stressful.

After an incident when we were vacationing at a relative’s home where she wandered down their steep driveway to a busy street below, I always make sure she is in arm’s reach when we’re at someone else’s home.

Now, at the age of 14, she doesn’t always like that, but until I can be sure she’s not going to be tempted to wander or run off, that’s how it has to be.

I have read countless news stories about autistic children wandering off, and the outcomes are often tragic.

My heart breaks a little each time because I know how easily that could have been our child.

In the wake of stories like this, there’s a tendency to blame the parents.

“Why weren’t they watching their child?”

“How can a parent be so negligent?”

“I would never let that happen to my child. I always know where they are!”

I can tell you that the day Lilly walked off while we were on vacation, there were at least three adults present within feet of her, and she still managed to quickly and quietly slip away.

It can happen to anyone, anywhere, anytime.

No one is immune, and realistically you can’t have eyes on your child 24/7 unless you plan to bring them with you every time you go to the bathroom or take a shower.

If you have a child who’s inclined to wander, creating awareness is one of the best things you can do to keep them safe.

Give your neighbors a heads-up, as well as the police.

Educate everyone you know who might be around your child for any length of time because in cases like these, it takes a village.

Of all the milestones or developmental stages whatever you want to call them – the toileting aspect of this journey never really bothered me.

What bothers me however, is lack of accessible changing facilities, and also the low amount of prescribed nappies/pads people are given.

I accepted a long time ago that toileting in the “typical” sense was not going to be on the cards for us.

It really is no big deal.

My child is fed 24/7 by a feeding pump so expecting her to be able to control bowel and bladder movements never really came into it.

I would never entirely rule it out, never say never all of that.

I know it isn’t the most glamorous of topics for a blog, but it’s an important one. 

The result of this is that I am now “that” mum.

The one who will mention and write to companies/places querying their lack of facilities.

There is no popularity to be gained from making such demands… These facilities require space and money, two things that aren’t easily come by.

I don’t like how entitled and self righteous I can act, but if I don’t, how can we ever inspire change? 

Change doesn’t happen from idley wishing things could be easier.

Change happens through spreading awareness, writing to those in power, signing and sharing those petitions.

I have been impressed and humbled on social media by how many people recognise the importance of these facilities that aren’t in our situation – because they have listened and been made aware.

That’s all it takes and we can’t give up.

Big companies and councils – whoever is in charge…. They often cater to the majority.

Forgetting of course that they themselves, at any time in life, could also need those facilities.

It isn’t until you are in our situation (or know someone who is), that you realise the importance of hoists, level access, changing tables etc.

Just because we aren’t easy to cater for doesn’t mean we should be overlooked.

I was horrified when our town underwent a large regeneration and a Changing Places wasn’t included in the plans.

I have since met with MPs and found out that thankfully one has been planned for when the local bus station is rebuilt.

Why this couldn’t have been done long ago I’ll never understand.

I even visited the new cinema and witnessed a group of people that appeared to be carers with a group of wheelchair users.

I overheard them discussing the toilet situation and deciding not to get drinks so that they would not need the toilet.

A person shouldn’t have to suffer dehydration so that they can spend time with friends! 

It shouldn’t feel like a special treat being able to maintain hygiene, cleanliness and dignity, however this is still very much the case.

I’d like to think that as time goes on, attitudes and awareness is changing.

More money is being put into funding changing places, and the map of available facilities seems to be growing.

You can’t underestimate just how important this is for so many people, it enables people to access the community, enjoy holidays, stay out for longer without anxiety about getting home and so on. 

Where we are, you get given 4 pads a day.

There is no fighting this number and there is no point trying.

I know in some ways we should be grateful as other areas have less or none at all.

We are told that DLA money is to be used for additional pads – but you’d be surprised just how far this DLA money is expected to stretch for all of the extras needed (tube pads, bibs, hospital car parks to name a few examples… it all mounts up).

4 pads a day for a child that is doubly incontinent and prone to cdiff flare ups which can at times mean 10 changes a day!

(My back hurts thinking about it!). The environmental implications of pads is something that troubles me, and I have toyed with the idea of researching reusable pads; but I weigh this up with the fact we do 2-3 washes a day of bedding and clothing and I just put it off for another day.

We recently purchased a second hand massage table.

A wise friend had mentioned this could be a good way to change/dress Amy when out and about or on holiday.

The table was collected and we decided to visit the seaside as this was close to where we collected the table from.

We arrived at the beach with no expectations and no prior research.

Imagine my surprise when I open the door to the disabled toilets and there in all its glory stood a large changing table and hoist!!

It was amazing.

I then opened the Changing Places app to discover this was the only one in the area for some distance. How lucky was that!?

This now firmly puts this place (New Brighton) on the map for us for places to visit.

Imagine if everywhere had this?! How much easier life would be.

I could probably write a book of changing nappy themed stories (I’m not sure how popular it would be!!), the times we’ve changed Amy on the ramp of the van, the time we nearly broke a baby changing table from the wall because of the weight limit not being clear, the times I’ve binned whole outfits due to the severity of the situation.

The laughter and tears I have shared on days out with other friends whose children require pad changes at an older age. 

I definitely took for granted how small she used to be, as she has grown it is getting harder and harder to stay out for full days.

I often joke “what did I even talk about before we had Amy?!”, the same can be said for how much I can talk about wee and BMs.

Prior to having Amy, any nappy talk would have me retching and leaving the room, and now I feel I could deliver a lengthy Ted Talk on the topic!

I’m not sure whether I should be recoiling in horror at myself or giving myself a round of applause for overcoming squeamishness.

Amy is only 7. She is a very tall 7 and I can just about lift her still.

If we are lucky enough to have her as an adult, I wonder how on earth we are going to do it.

Even with hoisting, her movements are severe and dressing her is often a two people (or more!) job.

I do worry about the future. Quite a lot actually.

How we will keep her safe. How we will keep her clean and comfortable. How we will cope when we go somewhere with inadequate facilities – do we just not go? Do we stay home? How will our backs be 5 years from now?

The changing table is also important for a stretch.

We have done some lengthy car journeys where we have deliberately stopped at a service station that has a changing places.

The main goal is to make sure Amy’s legs don’t lock up and ensure she isn’t in too much discomfort.

Sometimes we get her out of her chair and she comes out stuck in a sat position and winces in pain when straightened out.

The long term effect of stiff muscles and bad positioning doesn’t bear thinking about.

So I am always thankful of the opportunity to let her have a good stretch.

I know myself how much it can ache when you stay in the same position for too long and for Amy it is so much worse.

She wants to explore places and see everything, but she also needs the right equipment.

I am often tempted to buy a mobile hoist too and then between that and the massage table, more options are available to us.

But where does it end?!

You could just keep buying more and more equipment to try and make life easier and it costs a lot and takes up space that we don’t have… so really the problem lies in the community not having enough facilities.

Have you had any similar experiences? How is it in your area? Do you get nappies on prescription without a fight? I’d love to hear other people’s stories.

Every now and then I read something online that lifts my soul for the rest of the day, sometimes ever the rest of the week! Yesterday was one of those days…

I was looking on the BBC website and saw the story of a mum, Natalie, and her young autistic son, Rudy, who has a range of additional needs.

They had been for a walk along the beach when Rudy became distressed and was having a meltdown, lying down on the floor.

That’s when, instead of the usual ‘looks’ and harsh comments from strangers that so many of us know all too well, they met Ian.

Ian chose kindness, and looked for ways to help, getting down with Rudy and engaging with him. Ian saved the day. You can read the full story here:

https://www.bbc.co.uk/news/uk-england-essex-56740600

As my heart was thrilled reading this story, as I’m sure yours will be, it got me thinking about times when my autistic son has been struggling and when, instead of the usual comments, tuts and stares, people have simply asked how they could help.

Admittedly, it hasn’t happened often, but when it does it totally transformed the situation for us all.

It also got me thinking what motivates people to respond positively, or negatively, to a situation like this.

Maybe it is all about who people put first in that moment. Is it them?

Their peace has been shattered by a child having a meltdown and they are angry about the effect on them?

Or, as modelled by Ian in this story, putting someone else’s needs first for a while, being willing to step up and help someone.

And at the end of it all, which response is the one that has the best, lasting outcome?

An angry response leaves everyone feeling angry and upset, wounds that can last for ages.

A kind response brings joy, encouragement and friendship, as well as a memories and a story than can last a lifetime.

So, I’m challenging myself to ‘be like Ian’ next time I see someone struggling, to see how I can help, to choose kindness, to put the needs of someone else first for a while.

I hope for people to ‘be like Ian’ for me and my son when we’re out, maybe I need that to start with me being willing to do the same.

How about you?

Peace,

Mark

We recently purchased a Firefly Upsee from a special needs equipment selling page on Facebook and I thought I’d write a bit about our experience with it for anybody that is thinking of purchasing one. 

Joseph is 2 and has evolving cerebral palsy including spasticity in his limbs, he is unable to stand unaided as he has low tone in his trunk. 

His knees are fairly stiff and only bend around 30 degrees.

I did double check with Joseph’s physiotherapist and she agreed that he would be perfectly safe to use the Upsee in short sessions as long as he is well supported and we take care to use small steps that are in keeping with the range of motion that he has in his legs. 

Joseph is a very curious and inquisitive little boy who despite his motor control challenges, is able to navigate his little world in his own ways. 

He is able to roll effectively (and speedily!) to get to where he wants to go. 

I love that he has this small bit of independence and control.

Unfortunately it can be frustrating for him at times, as he is desperately keen to explore his environment and hates nothing more than feeling like he is missing out on something.

Joseph has a Leckey standing frame at home that we use regularly, which provides a different position for Joseph to be in and is great to aid social participation at home. 

However, it is different to the Firefly Upsee in terms of positioning.

The stander is used at a supine angle, so I wanted to try the Upsee to offer him a full upright position and that bit more freedom to move around in other places as well as at home. 

The Upsee was relatively easy to put on with a bit of help, it will take some practice to do so on my own. 

Joseph was interested straight away and seemed to really enjoy viewing his surroundings from a new and exciting perspective. 

He tired quite quickly understandably and so we only did a bit of a walk around the house, giving him a chance to explore the environment. 

As soon as he came out of the Upsee he was signing ‘more’ to me, indicating that he had enjoyed it a lot. 

We have plans to use the Upsee outdoors now that the weather is getting a bit better and we’re particularly excited to use it to go and feed the ducks, giving Joseph the opportunity to take a more active role in the activity and allowing him to see everything from a more optimum position. 

I envision plenty of fun times ahead for us using the Upsee in the future and would definitely recommend it for other children like Joseph.

We’ve all heard the phrase “new normal” and more recently I’ve seen a lot going about social media about better days being ahead.

Is that really true? What are these better days going to be like?!

Will I suddenly lose all this lockdown weight and become rich?! I doubt it!

Nobody will ever be able to answer that question in terms of what is better for everyone as a society, because everyone holds different views about what’s most important to them.

In saying that, better days ahead means for YOU and YOUR family.

Maybe you are like us and have been shielding.

Even the most restricted contact with your family and friends is such an incredible feeling…that’s definitely something to hold onto.

I’m in Northern Ireland so know that many people’s experiences of lockdown will vary depending on where you are from.

This is lockdown number 3 for us and this one especially has felt long, lonely and difficult.

We had a massive change recently when our little boy started a specialised school because his mainstream school simply couldn’t cope with his complex medical needs any more.

This was due in large part to him needing multiple brain surgeries to correct a malfunctioning shunt as well as all the trauma of having seizures.

I can’t remember a day that he was in longer than around 9.30/10am or that he felt happy going in.

He was an angry, frustrated, confused and hurting little boy. I don’t need to tell you what that did to us as parents as well as his triplet siblings.

It has been a very dark time for us.

He has now been at his new school for 6 weeks and the change has been absolutely phenomenal.

He has yet to have a day that I have had to collect him early due to his seizures, and his teacher reassures me his pencil grasp is excellent.

Previously Jacob was throwing then going into a seizure as soon as you’d ask him to pick up a pencil.

There was a really strong negative association with it and I really worried we’d never get him to write.

Seeing him now is just the most incredible feeling! It’s a small thing for most, but it’s truly amazing for us.

His brother and sister are settling back into their school as well and seem to be really enjoying all the routine of it again.

How amazing is it to hear children playing together again, or see them walking to school, or coming out of school waving goodbye to their friends?!

If covid has taught me anything, it is to remember who is important in your life.

I truly hope that no matter what your own “better days” will look like, that they are here or at least just around the corner.

Joanna Griffin, a parent carer and Counselling Psychologist, writes about her new book on parent carer emotional wellbeing.

Given the additional pressures parents of disabled children experience it is not surprising that there can be a greater risk to our mental health.

This includes increased levels of depression and anxiety.

The Covid-19 pandemic has made it even more apparent that parent carers’ wellbeing is vitally important. 

We need to take active steps to maintain our emotional wellbeing on a daily basis.

When we think about ‘looking after ourselves’ it can conjure up an image of going for a massage or having a soak in the bath.

While these can be helpful it can also involve planning for longer term benefits, such as taking a course to learn a new skill, eating healthily or going to the doctor about a recurrent back pain.  

It can be investing time in applying for Short Breaks or other support services.

Our wellbeing needs to be regularly topped up. 

We may need different things at different times.  And we may have to remind ourselves to make time to do these activities. 

I describe many of the strategies parent carers find helpful in my new book: Day by Day: Emotional wellbeing in parents of disabled children.

Get out in nature

One recommendation is to regularly get out into nature. 

It is commonly shown that being in a green space (i.e. park or woods) is beneficial for wellbeing. We can call it a ‘Natural Health Service’.

Recent research suggests that even a small space, such as a tiny front garden or potted plants can have the same effect.  

The study found that over a period of one year there was a 6% drop in peoples’ stress levels.

Which they state is the equivalent to the long-term impact of eight weekly mindfulness sessions. Further details can be viewed here: https://theconversation.com/green-front-gardens-reduce-physiological-and-psychological-stress-149793

The mental health charity, Mind, recommend collecting natural materials, such as leaves, flowers, feathers, tree bark or seeds and using them to decorate your living space or in art projects.

Being out as a family also has benefits for our children so whether you choose to seek out nature on your own or with your children it can be a great stress-buster.

We can also feel part of something bigger than ourselves. Seeing the seasons change reflects the cycle of life and can help us re-set. 

How can you connect with nature today?

When I think of my last five and a half years of being a parent, I don’t have many regrets.

There are a few things I would have done differently if I had had more information or experience.

One of those would be finding my mama bear growl sooner, especially on behalf of my autistic daughter.

She is brilliant, loving, gifted and I couldn’t be prouder of who she is.

As her mom, I am the protector of her wants, her needs, and really, everything that she is, especially when the communication of those things does not come easily to her.

I knew this when I became a mom.

I didn’t, however, know exactly how or to what degree I would need to roar on her behalf.

I certainly had no idea how often I would find her in need of my defence.

The world was a little more cruel and ignorant than I wanted to believe at the time.

In the early years, I thought inclusion meant taking her to every event, every gathering, every outing.

I truly believed that we could be a family who unashamedly showed up, participated, were who we were, and that this could eventually be successful and promote inclusivity.

I thought more exposure to the things that triggered my child would be helpful in the long-run.

I tried my best to give her tools to be successful in these settings, to help her settle in.

We did what we could to accommodate and help her cope.

But still, I asked big things of her…too big of things.

I knew what things were hard for her to be a part of and I knew that involvement in these things could cause her to struggle emotionally and physically for days.

Ultimately, I expected and asked her to be the one to adjust instead of those around her.

I am sorry that is the stance I took in my ignorance.

I have told her this and have committed to do better as I learn more of what she needs from me and how best to be an advocate.

These days, my mama bear roar has grown from a stifled whisper to a rumbling roar.

I hope to keep refining this roar of mine as I grow and learn over the years with my daughter, and others in the autism community, as my guide.

I will never stop having to learn because I am not one of them and cannot understand and advocate well unless I become their student.

I still have much to learn, but what I do know now is this:

I will no longer ask my daughter to be the only one required to adjust.

She is learning and adjusting and so must those around her.

It’s a two-way street.

If people will not respect my child’s autism and the accommodations, understanding, and flexibility that come with that, there is no room for us in their circle.

If individuals choose not to accommodate and adjust, based not only on the fact that she is autistic but also the simple fact that she is a human being, we have other places to be.

I will not ask her to be less autistic so that people might feel more comfortable.

I refuse to ask her to be someone she is not so that those around her do not have to step out of the pointless societal expectations that we consider to be the norm.

If people choose their curiosity over her comfort and sense of belonging, I will not subject her to that kind of scrutiny.

My daughter is autistic.

Autism is one of the greatest, most incredible things about her that makes her HER.

I will protect her and I will protect her right to be autistic, whenever and wherever possible.

I wish I had known then.

I wish I had fought harder.

I wish I knew I could give us permission to step out of the circles that made her feel less-than or didn’t take her preferences or triggers seriously.

I wish I would have given a louder “no” to those who saw her as a curiosity or puzzle to be solved instead of a precious little girl worthy of respect, consideration, and adjustment.

I cannot change the past, but I have changed the present and I am working to change the future.

Hear me roar.