Being a parent to our neurodiverse family

I’m not sure if I’d really thought about what it would be like being a parent.

I remember being all gooey eyed when feeding our new nephew a bottle of milk and that was it. Must have been some maternal instinct – I was pregnant within a month.

Not everyone chooses to have children.

Some people are desperate and have difficulty, some like me get them first time round and some others have no plans for kids and get them anyway.

But not many will have sat down and thought, I know, what I’ve always wanted in my life and what would make it complete would be if we could have an autistic child.

There’s no denying that being a parent is way more work than you think it’s going to be.

When the midwife came to see me the day after we took our first child Anthony home she found me still in my pyjamas despite it being nearly noon.

Within minutes of her asking how I was I’d burst into tears.

Once I’d had Anthony I was surprised by lots of things. I wasn’t prepared for tar like poos or weigh-in centres.

Being a mother is overwhelming.

Over 10 years later we now have two boys with autism and a little girl and I still get that same feeling but it’s not just overwhelming in terms of what I need to do and support them, it’s been overwhelming because of the amazing people they are.

Anthony struggles with being the centre of attention, sensory and motor skills, and following instructions. He came last in his race in the Swimming Gala but I was bursting with pride as his achievement for taking part, coping and even celebrating the win of school.

David is non-verbal, has sleeping difficulties and struggles in a world not built for him. However, when his sister cries he comes to find me and takes me to her side so I can comfort her. He also finds joy in the smallest and simplest of moments that can take my breath away.

Raising children is one of the best and one of the most time-consuming jobs ever.

I love being a parent. I love my kids to bits and it’s without a doubt the best thing about my life.

But, that’s not to say it’s not tiring and tough sometimes. Exhausting actually.

With my kids conditions, I’m short on sleep and time for myself. And this is likely to be the case for years to come. But ‘you can’t pour from an empty cup’ as my Gran used to say.

I hadn’t really expected to raise a child or children with special educational needs and that’s been both a wonderful and challenging experience.

Now David Can Help His Sister

David’s world is mostly centred around David. It’s the same for most kids when they are younger. Their primary concern is around themselves and what they need and want.

As David’s sister has grown, she’s learned that taking into account what David needs is important for the family. 

She’s learned that if we are going to have fun at the playground, it’s best if she helps him understand when it’s his turn on the slide.

She’s learned that if something is upsetting David she can come and get help or in most cases, she’s actually able to figure out what is upsetting her autistic brother and help him. 

 In some ways this is because without her adaptions we wouldn’t spend time at the park or her brother might lash out at her. 

But I also think she’s just growing up with an awareness of others needs and how this impacts on her world and the world of her family.

David though, is usually struggling with getting through each day. He doesn’t have time for the needs of others. 

Or so I thought. 

David doesn’t sleep well. Many people with autism (including both my sons) have sleeping difficulties.

However, David can stay in his room after lights out and will generally stay on his bed bouncing about and muttering in his own mysterious language.

David uses very few words to communicate but the other night he can came down the stairs looking anxious.

He waited on the bottom stair for me… and in a few seconds said ‘help me’.

I assumed something may have happened to his bed covers, or possibly he’d dropped a book down the back of his bed. 

So I held out my hand for him to guide me to the problem.

‘Fix?’ I asked.

‘Fix… Jay’

I was a bit confused. 

But half way up the stairs I heard a quiet sobbing and realised David was taking me upstairs because his sister, Jane, was crying in bed. 

It’s difficult to know why David came to get me. Was Jane’s crying annoying him?  Jane doesn’t usually cry a lot so perhaps it was just unexpected. 

I suspect he didn’t like it for some reason but whether that was because of how Jane was feeling or how he felt about the noise I don’t know.  

What I do know though now, given that this has repeated itself, it that whereas once Jane would come get me if David was upset, I can now rely on the opposite too.

Somehow despite their young age and challenges, they’ve found a way of looking out for each other.

And that’s pretty impressive. And makes me feel like things might be ok.

What We Take Away From a Break from School

School holidays can be a tough time for many kids, and especially ones like ours.

We have three beautiful, delightful and cheeky kids – two of whom happen to be autistic.

And whereas one cries the day before returning to school, the other one cries in the few days after he stops going.

It’s when David realises it’s not just a weekend and he’s not returning to school anytime soon.

When we first realised this, we thought that the best way to help David was to create a routine at home or allow him to choose his activities.

However, without any prompting, David would spend all the days of his holidays sat in the living room on one of the many sensory cushions, playing continuously with his iPad.

If we thought this made him happy then that’s what we would do.

But I think we have come to realize that this isn’t his preferred way to spend all the days of his holidays – it’s just how he copes without the routine and interaction of school.

Now we have plans for half-terms.  They don’t have to be full-on all the time, although sometimes they are.

Mostly they just need to have some activities out of the house.

We go for walks with the dogs most days but will include days out to amusement parks, visitor attractions and even going out to lunch. Many of the things other families may do.

Generally, these involve more planning.

We have to consider carefully what travel arrangements and environments will be safe for David and we have to make sure we can take lunch with us as there is every possibility he won’t eat whatever is available there.

But we manage… mostly.

I think what we’ve learned over the years of breaks from school, is that having a routine for David doesn’t necessarily mean doing exactly the same things every day.

But it does mean having some consistency in when activities happen (eg breakfast, going out, dinner, bedtime) and having activities to do.

It’s been a hard lesson learned.

Some weeks off would end in meltdowns when we thought nothing stressful had happened because we had stayed at home….

Of course, it was doing nothing at all and staying home that caused the meltdowns.

We’ve figured out some things but still find new challenges on our days out or times away, but I’m glad we’re managing to enjoy them as a family.

Little Changes Can Lead to Big Tears

David has always struggled with transitions. Sometimes it’s easy, sometimes it’s difficult and sometimes it’s a disaster.

Whether David likes it or not, he is going to have to spend a good deal of his life moving from place or place and task to task so it is something we are helping him learn.

A transition is when there is a change in a situation.

This could be not going to school because it is half term, going to the park with Granddad when you expected Grandma or going from playing a game to getting ready for a bath.

It was this last transition that became particularly tearful last night.

We are fairly routine with ‘early warnings’ in our home.

This is not the kind of warning I got from my Gran when I was being a bit naughty but a pre-emptive announcement of a change in activity.

“It’s nearly time for a bath”, I holler to the eldest and youngest playing in the lounge.

I then repeat the notice and sign it in Makaton for David, checking to see if he has understood.

He signs and grunts “Nah” for ‘No’ back to me so although he doesn’t agree with my suggestion, I know it’s been received. A few minutes later we repeat the process.

I let Anthony and David know it is nearly time for a bath and they will have to stop playing with their respective games and electronic devices soon and to go upstairs.

This is a way of setting expectations for the kids.

David’s response, however, is the same. This time I confirm that ‘yes’ this is going to happen. Finally it is time to get ready for a bath.

Anthony and Jane reluctantly, but happily head for the stairs. David bursts into to tears and runs into the lounge.

One of the ways David calms himself is through a small routine with a set of toys, he will often then carry them through a transition if allowed i.e into the car, through to the dinner table etc.

I can see my small boy huddled in a corner with a small pile of toys that he is quickly flipping over in sequence.

Although gathering the toys is a way David has learned to cope with transitions it’s not necessarily a long term solution and not one we have decided should extend to upstairs as it can create further problems in going to bed etc.

Instead, we encourage David to finish with the toys.

People with autism are driven by routine and being comfortable.

Having to stop preferred, comfortable activities in exchange for something like going for a bath is really difficult.

We have been helping him with this via an ABA type approach. We can now help David put the toys away, by setting an example and singing a song about putting the toys in the box. #

As I approached with the box and starting to sing, David knows what’s coming.

He is crying loudly with tears streaming down his face.

David finishes a cycle of his routine and waits as I slowly wave goodbye to the toys and one by one gently move them into the box singing the same song.

David is holding on tight to the last toy. I very carefully pull his hand and move his clenched fist over the box.

He drops that last toy in. I look over at him and give him a big smile, and his tears give way to giggles of relief.

Well done David, you put the last toy back. Maybe it was because he was finally ready to.

I put the box away and David takes my hand as we head towards the stairs. Sometimes he needs help, sometimes he copes.

It’s slowly becoming less of the first and more of the second.

A Day to Pause for Us

Did you know that partner and spouses are not the most common recipient of a Valentine’s Day card?

I shouldn’t be surprised – I didn’t get one last year and I didn’t get round to getting one for my other half this year either.

I’ve been too busy.

I feel like I’ve not got an ounce of effort left in me at the moment because of the challenges I’m facing on behalf of my kids.

It’s just about all I talk about.  Except when I’m too stressed to talk about it and then I don’t talk about anything.

I can just about muster a few sentences on what’s for dinner and which programme shall we watch for half an hour before we need to go bed.

I don’t imagine this is anything usual in a family with additional needs kids.

In fact I know it’s not.  The statistics vary but I’ve read that 65% of couples raising a child with ADHD (one of the conditions one of our kids has) have experienced marital problems.

90% of parents with a child with learning difficulties say they don’t get to spend enough time together.

Sometimes it feels like life is a set of tasks to be delegated and split.

I don’t want to make my kids sound like a job or household chores but there’s plenty to do for them.

Only one of my three kids can reliably dress themselves without support – and that’s the youngest one.

Brushing David’s teeth can be a two-person task but in most other things we can spend a lot of time in the same house but not together.

Perhaps the one thing about Valentine’s Day is not the cards (obviously) but the way that it sparks the reminder.

The reminder that our marriage is about more than just parenting our kids.

The reminder that we chose each other before we chose children.

The reminder that we are people and not just parents… partners and not just parents.

And even if the day only brings that thought and I smile a bit more at my other half, it crosses our minds to choose something romantic to watch for that half hour together, or we take two minutes just to actually ‘together’, then that’s got to a good thing.

A simple pause to remember we are with who we chose to be with and that we still do.

Three Ideas to Help keep My Sensory Kids Safe in the Sun

Many kids with autism have challenges with their sensory system.

Their brains are wired a bit differently and this means they interpret the world around them differently too.

Create Shade

This challenge with processing their senses, means my kids don’t like wearing some fabrics or some styles of clothing.

Straps on dresses can be very uncomfortable, hats and sunglasses are not acceptable for some of my kids either.

So along with looking for shade and thinking about this when we go places, we often take a little play pop-up tent to make shade.

We also use a parasol when walking about – it might look a bit strange but I think it feels very Jane Austin.

Sun Screen that Works for Them

Some children will enjoy smearing sun cream on, it’s part of the fun.

This isn’t the case for my kids and we always need to use a mist style spray that gentle covers the skin without too much rubbing that’s 50SPF.

If your kids love playing in water then you’ll want to look for a waterproof one.

Water resistant sun screen will need to be reapplied so we know when the kids get wet we’ll have to re spray them.

Keeping Them Cool

It’s not just the actual UV rays we need to worry about with the kids.

Along with potentially not being able to cope with the feeling of certain fabrics, our kids have difficulty interpreting temperature.

Our eldest, Anthony is temperature sensitive and his younger brother, David, is under-sensitive to temperature.

This means in the sun that I have one kid who doesn’t like getting too hot, and the other than doesn’t notice.

So, both need to be kept cool!

We try to keep them out of the heat in the hottest part of the day, have plenty of cool (but not too cold for Anthony) and iced water available and encourage drinking it with all meals and snacks.

We use frozen fruit and ice lollies for snacks when we can.

We will put cool pads or fill hot water bottle with cold water and put them inside cushions to sit on.

As with many things in our life – it’s all just about working around our kids so they can enjoy it.

Being a Parent and Being Me

There’s no denying that being a parent is way more work than I first thought it was going to be.

When the midwife came to see me the day after we took our first son, Anthony home she found me still in my night clothes even though it was nearly lunchtime.

As soon as she asked how I was I burst into tears. Being a parent was overwhelming.

10 years later, with two autistic boys and a little girl and I still get that same feeling every now and again.

And when I get it frequently I know it’s time to try and be me, as well as well as being a parent.

It can be simple things, most of which I try and fit in while the kids are at their respective specialist and mainstream schools.

Often it’s linked to being mindful of my choices – and realizing I still have them.

Choosing what radio station I would like to listen to on the way home… or choosing to enjoy the silence.

Choosing what to have for lunch, taking a few more minutes to actually select clothing for the day instead of just picking up and throwing the clothes from yesterday back on again.

Sometimes it’s about taking the help I’m offered when I can.

It’s rare to find someone who can look after my kids without me worrying, but when I do, I try and fit in something for me.

Last time it was doing a home study course and someone watched the kids when I needed to attend college for feedback.

Being a parent and being me are not mutually exclusive, but it can sometimes take a bit of thought and organization.

It’s also worth remembering that being with my kids is often a choice I make as well.

I miss them when I’m away and it is more than just habit and worry, it’s because being a parent is still very much a big part of who I am.

Having my beautiful kids and helping them grow into the people they wish and are able to be is a big part of my identity and one that I’m very proud of.

Time For The Summer Holidays

Schools are breaking up and the kids are getting excited – or at least some of them are.

The break from routine can be difficult for some kids with special educational needs.

So what is supposed to be (according to the Oxford Dictionary) ‘An extended period of leisure and recreation, especially one spent away from home or in travelling’ doesn’t always feel like it straight away,

Coping is generally more the idea than relaxing during most of the break from school.

Whilst most parents are glad when September comes back around, we find our lot have only just got into the routine of not being at school.

We then have a few weeks where it’s time to adjust back into the old routines again.

It’s often complicated by new classrooms or teachers, or both.

Next term David will be having packed lunch instead of school dinners so we will see how that works too.

But that doesn’t mean we’ve had a terrible break.

On the contrary, it’s about grabbing the moments when they happen.

Finding that period between the adjustments where the kids are happy and then working around what works for them.

Aiming for places that aren’t too busy – even if that means going on the days when it looks like it might rain.

This is especially the case for things like big attractions, beaches or events.

Going away to places where we can have our own space and own catering is really important for us.

Our kids need space to move about as David is very sensory seeking and Anthony’s ADHD means he is always on the move.

Fully inclusive buffet style eating does not work for us as we can’t leave our kids at a table and they can’t carry food.

They are unable to eat a lot of the food available due to restricted diets and we can’t leave them at a table so self-catering for us!

And while we may not seem to spend the whole holiday period ‘entertaining’ the kids and spend more time helping them adjust, it’s still a break from the norm and this in itself is something important for our autistic kids to learn to deal with.

Each year this adjustment period seems either a little easier or a little shorter and the ‘holiday’ period seems longer, and that’s something to be pleased about come September at least.

What can Carers do about Stress?

Apart from the possible things like carrying, lifting or simply be kept all night, some sources say that the chronic stress of caregiving ages mothers by ten years.

Parents of autistic children get sicker, too.

A study from 2012 discovered that parents with autistic kids were more likely to get common ailments such as colds, coughs and headaches as a direct result of the increased stresses linked to their caring responsibilities.

Even the NHS list being a carer as one of potential causes of stress.

They say thatit’s important to tackle the causes of stress in your life if you can, but that not always easy as a carer is it?

Their advice is to accept there’s nothing you can do when you have to and refocus your energies elsewhere.

So, here’s some of things I try to do to refocus and do something either for me and the family:

Enjoy the small things.

When the big things seem difficult to deal with, it’s sometimes worth giving you remind a break and looking at the smaller joys of life.  I could worry endlessly about the boys’ education at the moment.  It’s in turmoil.

But if I worry about this all the time I miss out on David’s massive smile while I push him on the swing, sharing Anthony’s delight when he finally gets past that level on the playstation or even the fun of playing with a big balloon.

Common every day (mostly) occurrences that lift the spirits and relief stressful thoughts

Take time for myself

Whether that be reading a book, enjoying a film or having someone come to the house to do my nails.

Me-time is good time.

And it’s easily missed when the kids’ needs seem to be great.

But you must look after the carer, and a bit of pampering goes a long way.

Exercise

No I don’t mean I’ve joined the gym, but I try and take a short time when I can to fit a little exercise into the day.

Walking to the shop instead of driving.

Scooting to the school or using a short workout app.

I always feel better afterwards even if it has only been for a few minutes.

What suggestions would you give?