Parenting through Disability, Art and Feminism

Category: Parenting Tips

How to Cope with a ‘Bad’ Day

How do you cope if you’re having a ‘bad’ day? If you are part of the ‘crip community’ a “bad day” has different connotations to those with ‘able’ bodies. In my world, a bad day is a day where I am feeling betrayed by my body. My body isn’t doing what I want it to, despite my best efforts. This may be because my mental health has taken a turn. My pain could be flaring. The fatigue has hit my like a train and every movement is as if I am walking through tar. Or on lucky days, all three at once.

Cope with a 'bad' day. How to cope with a sick day or a flare day when you still have to care for the children
Having a ‘bad’ day – A family of four snuggle under a blanket on the sofa. The father holds a thermometer

In those prechildren days the response would be to stay in bed, or at least my pyjamas and do very little until it passed. But, clearly, I can’t call in sick with my small ones like I could with my work. With these things I find barrelling onwards with a “bad-but-not-too-bad day” leads to more worse days and longer recovery. So what’s a crip with kids to do? Or a parent with the flu, or a hangover?

How to Cope with a Bad Day Using Mantras

Firstly, I mentally chant two mantras

Just Get Through the Day

My focus is on everyone having their basic needs met throughout the day. If everyone is fed, healthy (relatively), hygienic (relatively) and sleeping roughly when they need to be, then it’s a win. More on how to achieve this later.

This too shall pass

This is the mantra I discovered in a La Leche Group for when your breastfed child is going through a particularly trying time. Yes, you may feel awful right now. Your condition my be chronic and slowly degenerative. However, there are always days that feel better than others and those days will come round again . Sometimes you just have to practice patience.

Coping with a bad day when you have a chronic disease is hardwork. And soemtimes you just have to focus on the little moments of good.
A momma in a wheelchai shares a contented snuggle with her child

Getting Through the ‘Bad’ Day

So we’ve got your mental mantras to remind yourself of throughout the day. Now, how do you ‘just get through the day’ and cope when you’re having a ‘bad day’? There are a couple of elements to this, which involve some preplanned elements and some not requiring as much preplanning. So let’s recap the things we need to get through the day: food, hygiene, sleep, and play. These are the four elements I focus on on a bad day.

Food

So the preplanned version is when you are well to make a couple of premade meals and freeze them for days like this. However, if like me you have a slight aversion to frozen meals, an alternative is to ensure your freezer is stocked with easy meals (chicken and chips anyone?) Or your fridge and cupboards have grab snacks.

Coping wih a bad day as a disabled parent sometimes means eating food that is full of quick energy and delicious and easy rather than nutritious
A Bad Day Parent Meal in our house. There might be too much sugar buuuut – Remember our mantras

However, sometimes this isn’t possible. Maybe you never freeze anything? Or like we are during quarantine, you can’t get hold of your usual go to groceries. In that case, I embrace the takeaway. Yes there is an expense involved. We tend to find if we go big, then we can get 3 meals from one takeaway which outweighs the monetary cost for me.

Hygiene

So the preplanned version is a relative or loved one agrees to come over and do bath time on these days. Or, you have a stash of baby wipes/flannels/wash cloths that can be used to clean you all.

However, there are times when getting someone to help, or a flanel wash cannot be achieved for any of you. On those days, IT IS OKAY if no one is washed. IT IS OKAY if teeth are only brushed once. IT IS OKAY if hair is pulled into a quick ponytail rather than styled. Remember mantra two? This too shall pass. This isn’t your new normal. This is about trying to cope with a bad day.

A caveat. I know that on some days, even brushing teeth seems like an unclimbable mountain. For me one of my anxieties runs to dental hygiene, and so I have to have everyone’s teeth clean more than any flare of symptoms I have had (so far). But I can’t see how one missed brush is going to have long term effects on your oral health, as long as a schedule is returned to quickly. Disclaimer: I am not a dental health professional.

Sleep for the Kids

The preplanned version might be the old grandparent sleepover, or staying at friend. But that is not possible at all in these Covid-19 times, and there are many reasons it could not happen even when we aren’t all quarantined.

One Legged Parent absolutely done for the day before its even begun

So, what if you have children like mine, who don’t sleep. Who won’t sleep. Who need endless hours of me sat on the floor in their bedrooms to sleep. How do you cope with this on a bad day? In my case it is three things. Firstly, my husband is banished to the bottom bunk of 6ers bunk bed. Secondly, the children are in the bed with me. Thirdly, the tablet or screen. There are arguments against screen time close to bed time. However, both my wiggly-bottomed-small-people, need tthe screen to force them to sit still long enough to get sleepy.

I abandon my idea that they need to be asleep by a certain time. I abandon any idea of having an ‘evening’ I might have. Thank God for smart phones. I can scroll endlessly while they gradually drift off. It’s a very imperfect plan, but sleep is a big issue for us, and we definitely follow the needs must. Having them in my bed, means any bedtime waking can be dealt with without me having to even sit up. So, everyone goes back to sleep quicker. And more sleep is the quickest route out of a bad day, it is the clear winner in our house.

Play for the kids

The preplanned version involves a box for each child, full of secreted away toys, and activities. It is important they only come out to help cope on bad days. They need to feel special. In ours there are pencil crayons, a little notebook, a couple of toys that they like but won’t miss on a day to day basis, a book and some play dough. I recently bought some little plastic eggs which I can put some of the things in. Bonus surprise toy excitement. The novelty of the box usually gives a couple of hours of play with very little interaction from me. Intersperseplay with Netflix and most of the day is done.

However, sometimes these things hit us unexpectedly. Maybe you haven’t got the time or resources to put a box like this together, or maybe it just hasn’t worked for them this time. This is the point where you enter full on crisis mode. Chant “just get through the day” over and over. Screen time. I know there are people averse to too much screen time but at one point they thought too much reading would “addle” people’s brains too.

I read the research summarised here. I decided that if we are allowing our children to self regulate their food, drink, play, sleep then why am I not doing it with screen time? The thing is we just don’t know what the long term affects are but that doesn’t automatically mean bad. Some of the longer term studies equal good. But, if you just can’t bring yourself to break your screen time rules … I get it and that’s your choice as a parent to make. Here are some other things you can do that are low energy on your part but high energy on theirs.

Games and Activities

Go count the windows

This game came into being in my mum’s three storey town house. There were no grown ups with the energy to ‘exercise’ the small folk. As a joke, I told my 6er that I needed them to go up to the third floor and count how many windows there were. To my surprise they ran up to do it. And the 4er followed his sibling! We were able to repeat the running up to the top of the house a further four times, before both children were “too knackered” to continue. Obviously, it doesn’t have to be windows, but think of something as far away from where you’ve sat that you desperately need them to inspect. Most children under 7/8 want to ‘help’ and so you can help them burn some energy this way. You have to act very grateful though or they will quickly get on to the ruse.

Doctor/Bury Mummy

These games involve you lying on the sofa under a blanket while the children either ‘treat’ you or bury you under a mound of cushions. The suitability of these is totally based on your personal circumstances, pain etc. I tend to find they are games that require very little interaction from me by way of talking. And, personally, when I’m coping with a bad day not talking is only a good thing.

Creative Challenges

Lego Challenges. Google lego challenges and you will find a plethora of challenges that your small folk can use to occupy them with building for a while.

Colouring. Get the kids to select some of their favourite characters to colour in. I find my kids are more engaged with the colouring process when they have picked the ones they want.

Chalk On the Ground Outside. This one is great for getting some fresh air. Don’t worry about mess because the rain will eventually just wash it away. The kids love it though because they feel like ‘rule breakers’. We have used activated charcoal mixed with water and a little vinegar when we didn’t have chalk to hand.

An example of 'chalk' when you can't chalk. Sometimes, and particularly when you're having a bad day' you've just gotta make something out of what youve got.
‘chalk paint’ we made using some activated charcoal I had

Reading

Sometimes I can sit with a pile of books, and just read through them with my two littles. It doesn’t feel like too much but sometimes I don’t have the concentration. We recently invested in a few kids audiobooks (Charlie and the Chocolate Factory, Several Paddington books, How to Train Your Dragon and Fortunately the Milk if you’re interested). We play this on our speaker and it keeps 6er occupied for an hour and 4er half an hour.

Keynote/Powerpoint games

I have spoken in past posts about my use of presentation software to make simple point and click games for my children. I have a few of these ‘spare’ that I can load up keep them occupied for a few minutes.

Leave the House

It’s not as possible now with quarantine, but I find sometimes the energy or effort I put into a change of scene makes the rest of the day easier. Soft play or grandma’s house in days of old. Nowadays its getting the mobility scooter out and taking them for a yomp in the woodlet near our house. I emphasise using the car and/or mobility scooter because I am not worrying about fitness here. I am worrying about getting through the day.

Resting for you

Some of the things I’ve already mentioned are in order to optimise rest for yourself when you are feeling grim. And the only thing I am really going to do is give you permission. You only have to cope with a bad day. You just need to get through it.

It is okay to leave the cleaning and tidying until you feel up to it. Hire someone to help if you never feel up to it.

It is okay to eat the same meal for a several days in a row – even if it isn’t particularly nutritious.

It is okay to not shower for a couple of days.

IT IS OKAY TO ASK FOR HELP (and to keep asking until you get the help you need and to accept state social security to give you financial assistant).

You are not ‘less than’ for needing help. Everyone needs help.

If you’ve found this helpful, I am really glad, and I hope you’d considering signing up to my mailing list. I won’t spam you, I swear. I will send you the occasional email with some ideas about things to do with the kids. And I have a FREE ‘paper games template’ which will get delivered to you whn you sign up … I hope. If not, contact me and I will check what is going on.

When Teaching is a Disaster

I ruined my kid’s joy of learning

An image just before I failed my kid and his journey for learning japanese
Moments before the disastrous learning – feeling over confident

Teaching and learning when you’re not qualified. I’ve been scratching my head for the last week or so. I knew I wanted to talk to you all about growth mindset. I want to encourage you all to pick yourselves up again. Thankfully, because parenting is one endless learning experience, it hasn’t taken long for me to live a growth moment. As you may remember, in my inaugural blog post I talked about how successful my first teaching Japanese session with my 6er went. If you didn’t catch it, its here. I think I maybe even detect a hint of gloating in the post – I jest of course, but I finished our first lesson on a complete high.

And then …

The wind was knocked out of my sails. The rains rolled in. So I had this amazing idea that we would learn lots of Japanese through the medium of Pokemon … and so we started with a session all about Pokemon. Second session, I decided learning some words for clothes would be useful, and also easy to reinforce during the course of an average day.

Rain batters down on a rainbow coloured umbrella. The words read “What to do when the fail rolls in”

“I know!” said my quarantined brain. “Why don’t we design a Pokemon trainer who can represent us as we continue our language learning journey?”

So, we sit down. I have a paper doll template that I have created for the session (which you can receive amongst all my other paper blanks if you sign up for my email list). Now, the Japanese colours rap was a big hit and so I thought, “Easy! We’ll just roughly follow the format of the last session, bob’s your uncle”…. Can you see where I’m going with this?

I could NOT find a blooming Japanese clothing song anywhere. But I did find a compelling young woman talking through some of the clothes, and it was late the night before I knew we would be doing some Japanese and I thought – what the hey!?

My Big Mistake

When I played the video, 6er immediately panicked. They could’t understand anything she was saying, and in their panic, their higher brain function switched off so even with guidance they weren’t able to glean meaning from the video. From that point on, the lesson was doomed. Although we continued with a few activities and built our paper dolls, every time I tried to say any Japanese words about what we were doing they would whine.

Sh*$%@!!!!!!!!

We instantly went from them begging me for more Japanese every hour of the day, to putting away all of their Pokemon things, and them walking away from me if I tried to broach the subject.

Double SH!$%£!!!!!!!!!!

Image of a mum having failed. I like to think it's because she wasn't helping her child learn Japanese

How do I fix this hole I’ve made for myself?

So what’s a homeschooling during quarantine Momma to do? I regrouped. I put on the breaks and took the pressure off. We went back to Spanish, and were able to video chat abuelo and show off our new skills to him. For me, it is more important to encourage my children to find joy in learning and acquiring new skills.

And so, I began to think about the games we used to play when we went to Lingotots. I tried to remember which ones really engaged him. I wondered whether I could utilise one of those games, to reengage 6er in the Japanese learning journey. Enter the parachute (like this one but 6ft). I figured, family of four? Easy we can play together…. Except I didn’t factor in that two legged parent having an off day and not being able to help. I didn’t think about 4er being “too tired” to jiggle a parachute for more than three seconds at a time.

Palm hits face.

But, 3 minutes of jiggling a pair of trousers on a parachute while chanting “zubon, zubon, zubon” did engage sixer.

Huuuuuuuzah!!!!!

So, I’ve got him back onboard with Team Japanese Learning, but how do I teach the new vocabulary? Luckily for me, something, I’m not quite sure what, triggered a memory of my high school maths classes (I know, weird, right?). Bear with me. So, at my first secondary school, we had a maths teacher who was nerdy but excellent. So each lesson we would have a powerpoint presentation on contemporary pop culture – Lord of the Rings, Harry Potter etc. And the presentation was basically an extended maths game. It was so fun because you just answer and click. Then there’s has enough immersion to make you feel like an active participant in an adventure.

An example of a slide from our Learning Japanese session
A slide from our Pokemon Catching Presentation Game

Making a Presentation Software Game For Learning Japanese

So that’s what I made. I gave 6er the opportunity to ‘play’ as a new Pokemon trainer, getting ready for his first catch. I framed the Japanese learning this way in order to reintroduce some of the old vocabulary whilst introducing new vocabulary. And because the vocabulary was integrated into the storytelling, they were forced to engage with the meaning. So, hopefully, the words are retained better. Wahey!

I used to be very tech-literate but in the past few years, I haven’t really had the time for anything more than basic. I mention this because what I’m doing is kind of basic programming. It uses the logic skills of coding to make it work. And if I can do it, I’m certain anyone can. For those not familiar with presentation software, this process involves using the “link to slide” feature. I used Keynote this time round, but I have done it with Powerpoint in the past. Now, because all you can do is a click feature, not dragging and dropping, you need to keep the adventure to multiple choice questions.

Before I talk us all around in circles I think perhaps an example is necessary here.

So, I want 6er to learn the word for ‘trousers’ and ‘shorts’ (zubon and hanzubon respectively). I create a slide that contains an image of both, labelled with the romaji Japanese word and a question. I wanted to 6er to feel like they were making active decisions that affected the outcome of the game. So on the slide I asked them to pick trousers or shorts, with the guidance that it was ‘cold outside’.

A chart that shows the way that the slides were developed when learning Japanese
A visualisation of where slide links take you in the game

So, you then create two further slides. One congratulates the player on making the right decision, and the other asks them to try again. Then it’s a case of linking each image to the relevant slide, and linking those slides back or onwards. Are you following? I hope you are, but if you aren’t get in touch and we can have a more in depth explanation, or you can even sign up to my email list to hear when my presentation skills are up for purchase.

The Final Verdict on Learning Japanese This Way

I thought I’d finish this blog with a review from the source, 6er. Their response when I asked how they liked their Japanese Learning this week.

“It was good. I really enjoyed being able to go to different places but next time? Can we go to an electric factory, a volcano, and the ocean for my second catch. Coz we’ve already got a grass type, haven’t we?”

6er

It is at this point I am going to stop scribing what they say because it turned into a very long conversation. But, they are, clearly, very impressed.

Have you ever felt you’ve ruined something your child loves? Were you able to take a deep breath, forgive yourself and then carry on? It’s tough and I see you. If you want access to some of the resources I mention in these posts, sign up for my mailing list. You’ll get a free paper games resource, including the paper doll sheet.

How I Overcame Parenting Guilt and You CAN Too!

A disabled dad or parent or father or daddy plays ball or catch or games with his small child or son or kid
A disabled dad plays ball with his child on the side of a mountain

I think we all know that feeling of momma guilt. You know the one – the little voice that says “you’re not hiding enough vegetables in their food” and “that they’re four so obviously they should be playing violin and speaking mandarin by now“. It was the one that when they were born told you that “if you’re baby is crying you are doing something horribly horribly wrong!” And I’m here to tell you that that little voice is b*ll*cks. Well not entirely, it evolved to make us good care givers – but you know what so often these days it can go a bit haywire and make you feel awful, incapable, scared, depressed. And no one likes feeling those things. Or should miss out on the joys of raising small ones because they’re feeling those things.

And don’t get me started on if you’re a disabled parent. You’ve spent a big chunk of your life (depending on when you joined the ranks of the crips) being told you ‘couldn’t’ and ‘shouldn’t’ and ‘won’t’ ever. And yet when you have a baby suddenly you are deemed by all the professionals an expert in parenting and left to get on with it … Deep Breaths.

But it’s true. Not only are you dealing with all the feels of a new parent, you are dealing with all the feels of disabled parent guilt – “I can’t run around with them”, “I’ve fed them chicken nuggets and chips for the third time this week”, “it’s been four days since anyone had a bath” …. Oh wait, able bodied parents have those issues too. But when you’re on your fifth day of a flare, and you’ve got no spoons left (if you don’t know what spoons are click here) you can really begin to feel like you’re failing as a parent. And it’s hard. I see you. I’ve been there. I still am there on a regular basis. I know.

I am going to preface this story with the fact that I had severe undiagnosed post natal depression spanning the first three and a half years of parenthood, so I would urge you to see a medical professional if any of my story feels familiar.

mum or mom or mam or mummy or mummy or mother in a wheelchair or disabled sits cuddling their child or son or daughter or kid or little one in their chair or wheelchair

When I first had, now, 6er I was 22. I had just finished university, been married about 7 months, and moved to a new town to be nearer my husband’s business. I didn’t know who I was, let alone who I wanted to be as a parent, and having a baby was nothing like Eva Longoria’s experience in Desperate Housewives. I had a baby who refused to sleep in his cot, who woke every hour to feed and whose undiagnosed tongue tie left my nipples red raw. The two legged part of “three legged parenting” responded to our new baby by throwing himself into his business to earn money, so I was basically alone. It was tough. To say I wasn’t coping would be an understatement.

Everything. Absolutely Everything I was reading said that my child needed me. That I needed to be with him 24/7 to create a strong attachment. That crying meant he had an unfulfilled need, and so if he was constantly crying I was doing something wrong. It didn’t matter that that’s not what the stuff I was reading actually said – that was my takeaway. I was at breaking point. My own parents and parents in law were both too far away or busy with their own work to help, and I needed more than anything to sleep. If I could just have one morning a week where I knew I could have a couple of extra hours I would be golden or at least maybe I wouldn’t hate motherhood anymore.

I grew up in quite a poor household so the thought of spending money on something I didn’t ‘need’ was difficult for me. I wasn’t working so I didn’t ‘need’ childcare. Or at least that was what my sleep deprived brain was telling me. Luckily, we live less than a mile from the loveliest, friendliest, most musical nursery in the universe, full of staff who love my kids as much as I do, and with owners who prioritise the children over profits. Enter Do Re Mi Nursery (if you live in Durham, UK and are looking for childcare I can highly recommend them). But for all the relief I got for being able to sleep another three to six hours a week, it couldn’t shake the feeling that I had somehow failed as a mother. Everyone else could be around their baby 24/7 and not go quietly mad. Couldn’t they?

It turns out most don’t. The first baby is especially a shock to the system, and everything you see online, all the blog posts, the tv shows, even your parenting friend you have coffee with are all lies. Not intentionally, but to admit how grim it really can get sometimes, can make it impossible to continue going on. The only reason I can be this brutally honest now is because I am through that stage now, and I have new issues to deal with.

I am lucky enough that a lot of the solutions I came up with to deal with guilt back then, help me when it rears its ugly head once again. And I am going to share with you now, just a few of the things I do when dealing with parenting guilt to pull me out the other side.

A wheelchair using dad plays with his kids and family in a park

Identify Your Guilt

Is the thing you are beating yourself up about in fact a thought distortion? Is it all or nothing/over generalisation? Is it mental filter? Are you fortune telling? Are you mind reading? Are you catastrophising? Are you using should too much? Are you personalising?


Positive psychology
talks through some of these thought distortions a little more detail and even has a handy worksheet if you really want to get down and deep with yourself, and have the time to spare. If you are feeling down most days, have feelings of low self esteem, or find yourself crying a lot then please PLEASE PLEASE talk to a health care provider.

In identifying the feeling you have (eg. guilt) and the thought attached to it, for instance, I feel guilty because everyone is a better mum than me (over generalising) allows you to see the route to disproving it. In this example a truly open conversation with a parenting friend, or your own parents would show you they have many of the same problems, worries and feelings of inadequacy. And if you don’t have anyone you can trust watch season 1 of Desperate Housewives, in particular ‘Guilty’ Episode 8 and reach out to a health professional. You are not alone with these feelings, I promise.

Practise Daily Forgiveness

“Loving people are compassionate towards others. However, if that compassion doesn’t start at home and doesn’t include self-forgiveness, it is incomplete and lopsided.”

Annette Villaincourt


Forgiveness is a thing that has to be practiced and learned, and even more so to learn to forgive yourself. To begin the process acknowledge the thought (the guilt) out loud, or if that feels too much or you can’t find a calm moment alone, try writing it out – by hand with a pen and paper. It’s important if you choose to write it you do it with physical pen and paper in order to connect you to the process.
Reflect on what you wish you had done differently and explore whether it is possible with where you are right now. And if not put a pin in it for now.
Apologise if you need to, the might be to yourself, or your littles, or your partner.
Adopt a Mantra, if you are really struggling to believe you are worthy of forgiveness and being guilt free. Look into the the mirror and tell yourself – I am enough. I am trying.


Identify your strengths

An amputee using a leg prosthetic weight lifts


So you’re not going to be the one taking your kids to play football at the park? What are your skills? What are the things you want to share with them? Maybe you’re a great photographer? Or you are the best at completing your physio? Or perhaps you know loads about all the suitable materials for straws? All of those things are important to a learning child, and more so because your child recognise they’re part of your world. Visit my post on teaching Japanese with Pokemon when you don’t know the language if you’re stuck for inspiration.


Reflect on the things your kids are learning


When you’re a parent, and particularly a disabled parent, it can be easy to dwell on those things you feel you somehow ‘lack’. When 6er had his two year check and was a little bit ‘behind’ it was easy to blame my inability to demonstrate ‘two footed jumping’ (hello personalisation) and that my disability was going to have long term effects on my kids and how could I be so selfish as to have children … etc. etc. etc. You know, rather than the fact that children hit certain milestones at different points which was actually what was happening there.

But you know what my kids are learning from me? They’re learning how to pace themselves and why it is important. They’re learning that creativity is an important part of daily life. They’re learning that people are different and that disabled people are fully human beings, who are NOT lacking rich inner lives.

And for me those things are far more important than being able to jump with two feet.


Utilise Support


It’s a long journey, this parenting lark. And trying to pretend you can do it alone, disabled or not, is leading you down the path to mummy or daddy burnout. I’ve already touched on the types of support all parents could access – friends, family, home food delivery, paid childcare etc. but as a disabled parent there is also a need to recognise a few things within yourself.

Have you been avoiding using that mobility scooter because physios and occupational therapists and doctors and all sorts of other people involved in your care told you it was giving up? Yup, I thought so. Sometimes using mobility aids isn’t giving up, its opening the world up. When I finally allowed myself to use the mobility scooter to take 6er to school, not only could I feel better about my impact on the environment (goodbye short car rides twice a day) and not worry about exercise for my kids (hello 1 mile of walking every day). But the best part was an unexpected positive. I was also able to have quality time on each journey to talk with 6er and hear about his world, as well as have time on my own after drop off and before pick up to move from mummy to writer and back again. And I must say, in this current Covid-19 world, it is the part of my day that I am really missing.

Rest


You are the expert in you, of course, and I am not trying to tell you something you already know about yourself. But sometimes it just needs to be said by someone else out loud.

YOU ARE ALLOWED TO REST!

The washing up, or the tidying, or even cooking a meal from scratch can wait. If you need to rest that’s okay. It has taken me five years and two children to move into a place where I naturally prioritise rest. Yes, that means some nights I am asleep by 8:30pm but what am I actually missing out on? Not much, and there will be other things, and other days to sort washing, catch up on Grey’s Anatomy or have a romantic evening with my other half. Plus a well rested parent can more easily manage all the other things that life throws at them AAAAND has more patience and better health outcomes. Quick, turn off the internet and go to sleep.

I hope that this post has either given you some new insights, or reminded you of things you may have forgotten, and I hope as you implement some of these ideas you find yourself feeling a tiny little bit less guilty. I do respond to all emails and comments, so if you are a disabled parent finding it all a bit much, do get in touch and I can talk with you and find some potential solutions to the issues you may be facing. It would also be great to have you sign up to my newsletter so we can start to build a great community and support each other! Follow me on Pinterest so we can share tips and ideas together too.