Special Needs Family Days Out: Time for a change?

I haven’t need to use them myself and since we’ve been thrust into the bonkers world that is being a parent of a severely disabled child, my son has been little enough to be changed in the same way as his non-disabled peers.

This easier time is fast coming to an end.

We don’t anticipate our son to toilet train.

He is 13.5kg and quite tall.

His legs dangle uncomfortably over the end of the baby changers.

I’m not entirely sure on their maximum weight limit, but some do not look sturdy enough for my boy.

I’ve known about the Changing Places campaign for over a year, but haven’t acknowledged it as we could get away with changing him in baby changing facilities.

Changing Places is pushing for fully accessible toilets that truly meet the needs of 230,000 people in the UK with a range of disabilities, including 40,000 people with profound and multiple learning disabilities, of which my son is one.

To be an accredited toilet a Changing Place needs to have a height adjustable adult size changing bench, hoist system, enough space for the disabled person and 2 carers, a toilet that can have a carer on either side, a curtain for extra privacy, disposable paper to cover the bench and an appropriate bin.

As you would expect with a child with complex health needs, my son has a lot of medical appointments and a range of different consultants and professionals.

We recently had a very long day at Southampton General Hospital (SGH).

We travelled for an hour each way, went to three separate clinics, plus a blood test.

In total, our day out was nearly 9 hours long.

SGH serves 1.9 million people living in the local area, plus a further 3.7 million people across Southern England for things like neurosciences, cardiac and children’s intensive care.

They employ over 10,000 members of staff.

During our day my son needed his nappy changing a few times.

We know where the conventional disabled loos with baby changing are, and can often change him in the weighing and measuring room in the outpatients department.

However, we ran into some difficulty during this visit.

Firstly, outpatients was very busy, so we felt we couldn’t jump in and ask to change him when the staff had a backlog to clear.

Twice we went to the Parent and Baby room, which has a secure sideboard, it was locked and we couldn’t find a member of staff to open it.

We waited outside a disabled toilet which has a metal fold down changer, on 2 occasions, for 10 minutes.

Obviously people are entitled to go to the loo, disabled people with decreased mobility may take longer, but we began to suspect it was out of order and the sign had fallen off.

We went to find another baby changing toilet.

When we did we discovered the plastic fold down changer was in an alcove and there was no room for my lanky boy to dangle his legs.

It was made of plastic and didn’t appear as sturdy as the metal one we’ve used before.

We were left with two choices: the floor or, thankfully, a bit of sideboard by the sink.

We pumped for the sink.

Looking back now maybe we should have headed back to outpatients and asked them to help us.

Nearly every consultation room has a bed in it, although most of them were in use.

However, should we have to make a song and dance every time he needs his nappy changed?

Telling people he’s gone to the toilet, trying to find a room available? Would we want that if we needed to go for a wee?

What about a child who is older and more aware than my son?

Or an adult?

There is certainly no dignity in having to be changed on a floor, is there any more dignity in having to share personal details with complete strangers?

I was genuinely surprised that there is no Changing Places facility at SGH.

I would expect such a large hospital, covering such a wide area, to be at the forefront of patient care and disability awareness.

I can think of another 4 children I know under SGH care who require the type of facilities of a Changing Places.

Intrigued I went to the Changing Places website which has details of toilets.

There are 735 Changing Places in the UK.

A quick scroll showed me that 22 of them are in hospitals.

I’ve tried to find out how many hospitals there are in the UK to put this into perspective, but that seems to be a challenging and complex question.

Loosely, there are 168 ‘acute trusts’, which are a board that manage hospitals, in England alone.

Without having to sit down with a calculator I can see the maths does not add up.

Healthcare providers are not providing suitable changing facilities.

Yet, others are, and in some surprising places.

The nearest Changing Place to SGH is West Quay, a shopping centre a few miles away.

The Trafford Centre in Manchester.

Lots of libraries and leisure centres.

Some leisure centres even have 2; for poolside and dry side activities.

Car parks.

The Tate Modern.

The NEC.

An ASDA and a Tesco.

Glastonbury Festival brings in a mobile Changing Places Unit.

But not a hospital that serves nearly 6 million people.

The Changing Places that gets me really excited is at Alice Holt, a Forestry Commission wood in Hampshire.

We can go there as a family and go for a walk, things we’d planned to do when we discovered we were going to have a child but have found hard due to his needs.

Yet we can also go to a lovely room which is heated and change my son in dignity.

You can find out about the Changing Places campaign here and they also have a Facebook page.

Firefly has a campaign called, ‘Space to Change’, where you can learn more.

12 Tips for Special Needs Dads

I’ve given up my career to care for him and my husband continues to work full time. I know not all of my tips will apply to all families, some will have a different structure or their child will have different needs.

Some of my tips may not be relevant in all situations, although I hope they might be.

1) Be strong, but not too strong During my 2 years in the special needs world I’ve seen dads who assume the protector, provider and general all round rock roll in the relationship.

This is awesome and should be admired, but try not to turn into an actual rock. If your child has had a tricky start it can be easy to be strong for your partner, especially when they have post-pregnancy hormones on top of everything. As time progresses it might help your partner and relationship if they can see your emotional side as well.

You’re the only person who truly understands their situation and it might help them to see your feelings too.

2) If you’re going to be late, text I looked at a few mainstream blogs as research for writing this and this struck me as a jolly good idea. Special needs or not.

3) Remember your partner might get isolated Some days the only person I talk to is my non-verbal 2 year old. Or a professional about my non-verbal 2 year old.

My husband is the only real life human I see and I might want to talk about something other than my son. Like what happened on Eastenders.

4) Don’t be a babysitter It must be hard to keep up when your partner is the main carer. Our son’s medications change frequently so it can be tricky when you only do his morning meds on a Saturday while your partner has a snooze.

Be proactive: if in doubt, check. Get her to write a checklist and pin it somewhere. If she manages to pop out, don’t just sit there waiting for her to return to do the evening meds, make a start.

Even better; talk to her before she goes, check what needs to be done so she can relax and enjoy her time out knowing your little one will be cared for as she would do.

5) Support weird ideas Yes, putting a quadriplegic 2 year old without head control on a horse is a strange idea. If it gets them out of the house and trying a new experience, does it really matter?

6) Ease her guilt.

My son’s disability has absolutely nothing to do with me or my pregnancy. It is a freaky mutation of nature.

I know this. I understand the science.

But it does not stop me feeling wracked with guilt that it is somehow my fault and I made him wrong.

That I am to blame for his pain and discomfort. And that I have brought this great sadness into the lives of the people I care about.

Remember to reassure her and comfort your partner.

7) Go to special needs stuff if, like my husband, you’re at work full time you probably miss out on special needs groups. Don’t. Try to go along at weekends and share your partner’s world.

You may even meet other dads and make friends. It’ll be lonely for you too and special needs groups are a great way to meet people in similar situations.

You could take your child on your own.

This’ll give your partner some time off, and you a chance to bond with your child without her around.

8) Make time for yourself You’re an individual and have your own interests and hobbies. It’s good to be a devoted dad and have family time, but it is equally good for your mental health to carry on with something you feel passionately about. It’s a difficult balance, but an important one.

9) Buy cake/flowers/a magazine A little thing to make your partner feel loved and appreciated.

We all need this at times.

10) Learn therapies If your child has anything like the number of appointments as my son it would be impossible to attend them all and still work. Take the time to learn the physiotherapy routine from your partner, and do it when you are caring for your child. See point 4 about not being a babysitter.

11) Talk back to that rock idea again. Try not to bottle stuff up. To steal an advert tag line: it’s good to talk.

12) Dates Care for your relationship, I think of it as a plant that needs attention. It can be easy to let it slide, but if you don’t water it and care for it the plant might die.

Depending on your child’s needs going out on a date night might not be an option. So maybe cook a nice meal, or even grab one of those meal deals from the supermarket on your way home.

Remembering to text that you’ll be slightly late, of course.

I Worry Therefore I Am?

For extra fun they change in nature and some of his movements can look like seizures, but they aren’t. As a result we are always on the back foot and puzzling over what he’s doing and if it’s a seizure or not.

I worry about trying to convey this to other people who care for my son.

As a result I worry that they may miss-read the situation and use rescue medication when he does not need it. Not through negligence or malice, simply through misunderstanding him & his condition.

I worry about Sudden Unexplained Death in Epilepsy (SUDEP).

I worry about him choking on vomit if he has a seizure at night.

I worry about walking into his bedroom in the morning & finding him gone, much like a new parent can when thinking about cot death.

I worry that the seizures are making him too tired, which ironically can make him more likely to have seizures.

I worry the seizures make him sad.

I worry the seizures will cause him to lose what little skills he has learnt, or stop his development from progressing further.

These are worries linked to his main condition. I also have worries to do with the side effects.

I worry about his reflux causing him pain and discomfort.

I worry about his tone causing him to be uncomfortable, at times we’ve had him screaming for days on end.

I worry about the effect of his immobility has on his little body. On his muscles, back and hips.

I worry about the implications of his regular vomiting, aspiration and chest infections mainly, but also random things like the acid on his teeth enamel.

I worry about his reflux getting worse and him needing more dramatic interventions, a fundoplication, or continuous feeding or J feeding.

I worry about the effect of general anaesthetics.

I worry he isn’t growing sufficiently, especially when he is being sick numerous times as day and losing calories. When he’s not being sick I worry when he gains too much weight in too short a time period.

Due to the ketogenic diet I worry he is malnourished.

I worry when he doesn’t poo for a day or two.

I worry when his poo is too runny or too frequent.

I worry if I Google something.

I worry if I don’t Google it.

I worry if he hasn’t had enough sleep.

I worry if he sleeps too much.

I worry he’s on too many medications.

I worry about the side effects of the medications.

I worry about the interactions of the medications.

I worry about the unsuitability of our housing to meet his needs and keep him safe.

I have more normal worries too. I worry that he’s happy. That he enjoys his life and experiences. That he forms bonds with people, even if he doesn’t see them much.

These are the worries concerned with my lad.

There’s further worries to do with my husband, myself, the cat, our friends and family. It’s truly exhausting and no wonder I collapse into bed every night.

The emotional tiredness of caring for my boy far outstrips the physical.

A Home and a Workplace?

It’s very strange having people in your home. You feel like it should be tidy, spotless and you should be dressed.

This can often be a crazy goal when you have an appointment at 9am.

Even if you are not actually being judged you feel like you are.

When you’re pregnant you have a home visit from the midwife send health visitor.

At the time I presumed it was to check I didn’t live in a hell hole and we’d resume our lives as normal after these two home visits.

Instead we have a steady stream of professionals who visit. Physiotherapists, OTs, community nurses, social worker, portage.

Over the last 2 years we’ve gotten more used to this experience, feel more comfortable having people in our home for an hour or so.

Then when they leave we can sling our PJs back on, even though it’s 2pm, and stick on the TV.

We are now entering a new phase.

We are struggling to care for our son between us. As a result we are beginning to have volunteers, careers and nurses in our home for longer periods of time.

As I write this we are unsure of how many hours a week this will be for, but there’s talk of overnight nursing care.

We go to bed while someone will sit in our son’s room, awake, and watch him to make sure he doesn’t have seizures or is sick or suction him if required.

This is a hugely alien concept. Our house will not only be our home, our sanctuary from the world which we can withdraw to, but also a place of work.

We have to complete risk assessments, adhere to health and safety regulations and provide equipment.

I worry our home will be judged.

What if I’m too knackered to wash the huge pile of syringes that accumulate during the day? Will I feel uncomfortable to leave them until the morning as I would now?

I don’t even want to think about being intimate with the husband!

And while I’d love a beautifully decorated, clutter-free house like you see in the magazines, in reality we live in a rented bungalow full of mismatching Ikea furniture.

As well as all the toys you’d expect a toddler to have we have numerous pieces of equipment for my quadriplegic child.

Let’s not even get started on the never-ending fluff from the cat.

I know we desperately need the help, and I’m incredibly grateful we’ve been offered it.

I just can’t help but worry about when I need a wee in the middle of the night though.