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.

Epilepsy – The Medication Juggling Act

The seizures themselves are bad enough, but the medications used to try and suppress them are every bit as bad.

In effect, we have to give our child medications to slow his brain, then the Professionals wonder why he struggles to learn/demonstrate what he knows.

Recently Sam’s seizures have been getting out of hand again – having been NG fed for the past 6 weeks he has gained considerable amounts of weight, which will inevitably knock his seizure control.

Things get really complicated when you know that the NG tube made his reflux infinitely worse, leading to chest infections and several very scary moments.

Last week Sam finally went in for his PEG insertion, the PEG is now in and healing nicely.

So, after weeks of frustration and keeping the neurologist informed, we’ve now got a plan to change his meds. And it is a scary one.

Sam’s neurologist has very set ideas on how he wants to proceed – he rarely shares this information with the parents, however in 4 years he has rarely made a wrong call over Sam and his care.

So, when he recommended removing one of the meds Sam has been on for many years in favour of increasing the dose of one we really aren’t keen on…. let’s just say it’s quite a leap of faith.

But I trust this man with my son’s life, literally, and he hasn’t let us down yet.

Two nights ago, we started the changes…. one medication reduced, another kept the same, and the third increased.

The problem is, although the aim is to keep a balance, the medication that was reduced has been crucial in helping Sam for most of his life – however, as the neuro said, it has some very serious side effects which are non-reversible.

If it had made Sam seizure-free he wouldn’t take him off it, however the pros no longer outweigh the cons.

The reduction left Sam vacant and groggy, as the increase in the third medication isn’t yet enough to counter the reduction in the first. It takes a lot of gritted teeth to battle through on days like that.

Seeing my usually happy little boy completely polaxed, non-interactive and STILL fitting is a tough call.

But today, we may be starting to see light at the end of that particular tunnel – Sam has been happy, laughing, chatty and full of life again 🙂 This is also not unusual with meds changes; my boy likes to throw everyone a curve ball and respond positively initially to changes, only to acclimatise to them within a few weeks.

Again, this is not uncommon in children with his type of epilepsy but is incredibly difficult as a parent to deal with.

So, for now, we’ll happily take this (possibly brief) break in the storm and make the most of this precious time with our little man, while he’s lucid and at his best – because you never know, this time it might be the real thing x

Inclusive Design

I particularly enjoy the challenge of getting stuck in to an alteration/extension project, because even just a few small changes can make a massive difference to the way a home works for a family – maybe releasing a bit more space through jiggling about with the space planning, adding better storage to make rooms feel less cluttered or perhaps extending to add an extra room.

It’s widely acknowledged that there is a housing crisis in the UK at the moment, with shortages particularly in the south east.

This compounds the ‘hidden housing crisis’ – the shortage of accessible homes (highlighted by Leonard Cheshire in their #hometruths campaign https://www.leonardcheshire.org/campaign-us/our-campaigns/home-truths#.VU0b2Ry1vvY )

I think part of the problem here is that accessible design is usually seen as specific to wheelchair users.

House design is either ‘wheelchair friendly’ or not. However I passionately believe that inclusive design (whether that’s objects, homes, public buildings or spaces) is for everybody!

If you are young and fit it’s easy to be oblivious to how our environment and buildings can make life difficult for some people, but if you get injured and have to use crutches or a wheelchair, or even try to push a pram or wheel a suitcase around, the environment can suddenly appear very inhospitable, even impossible.

A fundamental element of inclusive design is to consider future uses and varying needs, and design for flexibility which would make future alterations as unobtrusive and cost effective as possible.

One of my missions in life is to try and get inclusion ‘mainstreamed’! I’d love to see inclusive design become every day.

I want to see fantastic examples of accessible homes featured on TV makeover shows and in the homestyle and refurbishment magazines so that disabled people and their families are presented with inspirational examples, and so that ‘non disabled’ people see inclusive design as the sensible design approach for life-long design.

Design that is flexible and adaptable for whatever life throws at you, for varying needs from the very young to the very old and everything in between.

Good inclusive design should allow everyone to be able to participate fully with family life as naturally as possible!

My Top 10 Things to Bring to Hospital

Preparation is key, and whilst I don’t have a bag continuously packed and waiting at the front door like I did in the bad old days when emergencies occurred at least once a week, things like a travel size toiletry bag and up to date prescription information can be prepared and ready to grab at a moment’s notice.

1. Medical notes including up to date prescription information.

You don’t need the whole back story – no one needs birth details (unless it’s relevant) and the like. Simply photocopy a recent hospital letter or make your own bullet pointed list on a sheet of A4.

Both the ambulance crew and admission team at the hospital will want this information from you.

It’s much easier to hand them a pre-prepared sheet of paper than to have to spell out complicated medical terms and remember drug doses in millilitres AND milligrams.

2. Medication

We regularly encounter problems getting hold of some of Hugh’s drugs.

It is much easier to bring our own than to wait for the on-call pharmacist at 2am.

His daily medicines are all kept together in a box anyway so it’s easy to grab and go.

3. Clothes for them

It’s usually really warm in hospital so bear that in mind.

Pyjamas- lots of pyjamas – to cope with the various bodily fluids they’ll be covered in.

Other loose fitting clothes like light jogging bottoms and T-shirts are ideal too.

4. Clothes for you

I find it best to have my stuff in a separate bag if I can. Whilst I have often seen very glam parents in heels and dresses by their child’s bedside, for me comfort is key.

If I’m going to be living on a camp bed on the floor by Hugh’s hospital bed for the best part of a week or more then I’m more interested in feeling comfortable than looking good. (In fairness that’s my day-to-day approach anyway: more slummy mummy than yummy mummy, that’s for sure!)

During the day leggings and loose tops are great, I always bring slippers too.  And for night-time I have a couple of pairs of pyjamas that could pass (at a distance) as joggers and these are way less embarrassing to be caught in than a dodgy floral nightie!

When your child stops breathing at 4am and their bed is surrounded by a team of doctors you really don’t want to be trying to cover up.

With that in mind a night top with a bit of support is a good idea, saves that awkward crossed-arm pose to keep everything where it should be. You know what I mean ladies, don’t you? Don’t you???

5. Toiletries for them

Nappies and wipes, any creams or lotions, toothbrush and toothpaste.

Hugh has eczema and this can flare up with the hospital sheets so I always have his creams packed.

A good lip balm or Vaseline is good too as the warm hospitals can be really drying.

6. Toiletries for you

Face wipes (I just use Hugh’s baby wipes), tooth brush, tooth paste, shampoo, conditioner, shower gel.

I have mine all packed in handy travel size containers so they’re always ready and just top them up again after each hospital admission.

A towel- some hospitals let you use theirs, others don’t. And maybe you wouldn’t want to use theirs anyway. Bring your own if you can.

7. Food

Hugh’s tube fed so this includes remembering feeding tubes too.

Most hospitals can provide the equipment you need but it’s best to have 1-2 feeds available if you can as these things aren’t always easily accessible in a&e.

For yourself grab what you can to take with you and remember a bottle of water, it might be a long time before you get a chance to get food or a drink.

8. Something to keep you both occupied

A book, an iPad, a few favourite toys- whatever you can to make those long hours pass by.

9. Your phone and a charger

To keep friends and family updated and, if you’re like me, to while away the hours on various social media platforms!

10. Money

For food, the morning papers, and a cup of whatever passes for coffee from the machine in the waiting room.

So there you have it. The top 10 things I think you need to bring to hospital.

What about you?

Have you any items that you always bring?

Or like me, have you had a clothing disaster or been caught out, leaving something vitally important behind?

Parking

HIM “You can’t park there, it’s a disabled space.”

ME “It’s OK, I have a blue badge.”

HIM “Bloody hell, they give them out for anything these days.”

ME “It’s for my son Thomas”

HIM “Look at you, there’s nothing bloody wrong with you.”

ME “He’s got Cerebral Palsy…”

HIM “It’s a bloody disgrace. That space should be for someone who really needs it…”

ME “He has a wheelchair…”

HIM “You should be ashamed of yourself, bloody fraud.”

ME “He has chronic lung disease, I have an oxygen cylinder in the boot…”

HIM “It make me sick”

ME “He is severely visually impaired and has hydrocephalus too.”

I start to lift Thomas out of the car into his wheelchair. The penny drops!

HIM “Oh my, it’s for your son?”

ME “I’ve been trying to tell you”

HIM “Oh, I’m so, so sorry. I didn’t realise…”

ME “You weren’t listening”

HIM “I thought it was for you…”

ME “No, it’s for Thomas. He’s heavy, we need the blue badge.”

HIM “It must be hard looking after a disabled child?”

ME “No not really, you get used to it. He’s a pleasure.”

HIM “I really am very sorry, I didn’t realise.” Starts to shuffle off embarrassed.

ME “You didn’t want to listen. You saw what you wanted to see”.

A version of this happens every time we go out with Thomas. It’s mainly looks or disapproving noises but it’s an ever present in our lives.

The extra quality of life that we gained from getting a blue badge is negated by the suspicious glare of the general public.

I love having the blue badge as it can save us a lot of hassle, the downside is we needed to have a child with complex special needs in order to qualify.

My back hurts each and every evening but I wouldn’t have it any other way.

When people ask me about Thomas and I read of a list of his conditions it can appear that I am fishing for sympathy. Nothing could be further from the truth.

Thomas is a happy, wonderful little man who brings joy to everyone who meets him.

We don’t need sympathy, just a little bit of understanding that at times our life is a little more complex, a little bit harder and takes a little bit more time than possibly other peoples.

That’s all. Ian