After moving into a bungalow after my divorce, I had to get all the adaptations done ASAP as my daughter is 14 years old now and impossible to lift without a hoist, now she is practically the same size as me!

I have had the bathroom done, the driveway, all doors widened, hoists/tracking installed, specialist flooring and some French doors from Maisie’s bedroom so she can access the garden easier. Sadly, the grant did not stretch to raising the garden just outside Maisie’s room. I was against having a hideous ramp installed, because although we need it, if the council installed it, it would be a concrete ramp with council paving and basic metal railings etc why do they have to be so ugly? I thought no, new life, new house, new plan for the garden, we will do this ourselves and make our garden area perfect for Maisie and the 2 boys. This would then ensure that the grant is used for the internal stuff first and foremost.

Two years later and we still haven’t managed to finish the garden.

I decided to get a couple of quotes for the work…needless to say they were out of my budget, soooo back to square one. Doing it ourselves….researching and learning new skills would be required.

Due to the age of the bungalow, it had a very established garden, but totally not accessible for a wheelchair. So, my boyfriend bless him has been out there most weekends slogging away clearing the garden, trying to get to a point where we can actually make this work for Maisie. We are sooo near but still so far from having an accessible garden, I do find it overwhelming at times. I’m beginning to think perhaps we should have just let the council do a ramp after all……. I’m sure we will get there, it will just take a little longer than we anticipated. Visions of Maisie using a hoist to get into the hot tub are still there…but it may be a while yet.

Now where did I put that lottery ticket….

Our Autistic son, James, had a meltdown yesterday, an experience that will be familiar to many families of Autistic children. Like any Autistic child or young person, when James has a meltdown, there can be a wide range of triggers that could be causing it. He may be being overwhelmed by sensory input. It could start from frustration that he can’t communicate something to us (he is mostly non-verbal). It could also be due to change of routine or he could be in pain or feeling unwell, or it could just be that his iPad battery has gone flat!

A meltdown isn’t James being ‘badly behaved’.

It isn’t him ‘pushing boundaries’ or ‘being difficult’. It is a brain overload. This is like a storm engulfing his brain, and it is not something that James can do much about in that moment, but there is plenty that we can do to help and support him.

Each child is different and will have their own sensory profile. For example, things that they are over or ‘hyper’ sensitive to including all of the better-known senses (sight, sound, smell, taste and things that they touch). Furthermore, senses like balance and movement (vestibular), positioning and pressure (proprioception) as well as the sensory receptors that we all have in our internal organs (interoception). Understanding these sensory sensitivities helps us to then help our child avoid sensory triggers, or if this isn’t possible then to provide ways to reduce their impact e.g. ear defenders for loud noise, or sunglasses for bright or flickering light, and to identify a peaceful nearby rest area for if we see them starting to become overwhelmed.

The first thing we do for James is to let him know that we are there with him, to keep him safe, and to reassure him that whatever it is that is causing him to be upset he will be OK and that we love him very much. Sometimes this can be as simple as gently holding him and speaking reassuring words to him; even if the words themselves find it hard to make their way through the meltdown, the sound of our voice speaking gently to James does help him. Other times, we need to give him a little space.

ith. A sound that might seem innocuous to a non-Autistic child might be terribly loud and painful to an Autistic child.

Next, we work with James to identify the cause of the meltdown, for example a flat iPad battery, or something that is causing him sensory overload, then we can help and the meltdown will slowly lessen. Yesterday, it was the sound of a lawnmower in our neighbour’s garden; we can’t stop our neighbour from cutting their grass, but we could shut the windows and significantly reduce the noise that James was struggling with. A sound that might seem innocuous to a non-Autistic child might be terribly loud and painful to an Autistic child; I recall hearing about a boy who would be completely overwhelmed if the fridge motor switched on while he was in the kitchen, for example.

If the cause of the meltdown isn’t obvious…

And James isn’t able to help us to understand it, we’ll look for other calming techniques such as pressure therapy, gently squeezing James’ thighs or arms, rubbing his back, or maybe using a weighted blanket. A sensory chew might help too. Distraction can sometimes work, depending on what is causing the meltdown, offering James a favourite snack or putting on a much-loved film or TV programme can sometimes help James to regulate himself and slowly recover.

Just being there with him, reassuring him and offering unconditional love, helps him to know that he is safe and cared for and that there is nothing to fear.

What is important to understand, however, is that it might take James a while to fully come down from the meltdown, even once the cause has been identified and fixed. Yesterday, the more visible aspects of the meltdown were over after about 30 minutes, but it affected James for the rest of the day. Just being there with him, reassuring him and offering unconditional love, helps him to know that he is safe and cared for and that there is nothing to fear. Letting him rest and not expecting him to do much, gives him the time and space he needs to recover fully. We can then look to learn from the experience, understanding and seeking ways to minimise the trigger that caused the meltdown from affecting James again.

A great way to understand meltdowns better is to talk with Autistic adults about their experiences of meltdowns. Frthermore, what strategies they have put in place to reduce the risk of them, and any advice that they can offer us as families of Autistic children. No two people are the same. However, there will be some really helpful things that we can learn from people that have been in similar situations to where our children are now. Let’s learn more together.

Peace,

Mark

Recently, my friend and I went away for a night to celebrate her 40^th birthday. We are both busy mums, she has 3 teens and I have 4 girls, from 10 -16 years of age. My youngest, Brielle, has multiple disabilities and complex needs due to being born very prematurely.

With all the craziness of the past year and a half, COVID-19, all the lockdowns and time at home, this was my very first hotel break in absolutely AGES!! And boy did I need the break from the kids (and hubby LOL!). It really does the soul, and body, so much good to get away from everything- even if only for about 28 hours!

It was a little taste of heaven.

We booked a very lovely spa hotel on the seafront, complete with our evening meal, breakfast and massage in the morning. A proper pampering girlie getaway! We made use of the swimming pool and spa area (hot tub, steam room and sauna) both the evening of our stay and the following morning before our massages. What a treat to swim laps in a pool- like I actually cannot remember the last time I did that! I’m usually holding a big 10 year old on my hip in the water so no chance of actually swimming. It was a little taste of heaven, do laps and just completely letting my hair down, not worrying about dinner time and everyone else’s needs.

I’m realising, the older Brielle gets, how vital it is to still make time for self-care, to just be me- Becca. Not Brielle’s mum, her carer. To do things I enjoy too, not for any other reason than to relax and have fun.

To step away from giving, from caring, from doing all the time.

And trust me Brielle is intense – she’s a sweetie but also a monkey! Temper tantrums and meltdowns have become commonplace. She requires 1:1 care – help with peg-feeding, toileting, mobility, communication, pretty much everything, all the time…

A bonus for me was I didn’t feel too guilty about leaving the kids because Brielle had an overnight at respite – which is really LOVES- so Ian and the girls didn’t have to mind her. Funny how I would worry or feel guilty if that was the case- even though she’s equally Ian’s responsibility, I always take the majority of the load.  The older teens are pretty self-sufficient so they had a chilled takeaway night with Dad. I booked our night away when I knew her respite date so worked out so well.

If you haven’t in a while, or ever, I highly recommend a night away to unwind and just do things you enjoy if you get a chance over the summer- you won’t regret it! Carers need to care for themselves once in awhile too.

You know those really cool families from TV / films etc who go on absolutely amazing luxury holidays to far flung countries?! I was not in that family. My family toured Europe in a camper van (also known as an RV, among other things…). I’m still, to this day, ridiculed by my brother for leaving our step at a very remote rest stop when my ONLY job was to remember to lift it into the van before we drove away. Let’s just say my legs became extra nimble on that particular trip!

Joking aside, I’d really not have traded those memories for all the luxury in the world. As a child I just wanted to be outdoors exploring, which is exactly what I was able to do! My brother went on to travel the world to do charitable work which is something I will always be in absolute awe of him for. I however am not someone who likes to travel as a rule, although now I am a mum myself, I’ve become aware of our triplets lack of holidays to this point (they are six). In all honesty, they have only ever stayed under our roof or a hospital.

Why? Well, for one thing, I have Multiple Sclerosis that is exacerbated by heat leaving me fairly useless in warmer climates. One of our triplets also has complex health needs that mean travel is really far from straight forward. Whenever they were younger I was recovering from a fairly intense treatment for my MS which took several years. Jacob then also had numerous spells of poor health which resulted in needing brain surgeries and a lot of time in hospital. The bottom line is our circumstances make it tricky to plan the following week nevermind a family holiday. It was just never a priority if I’m honest!

This year is different though. Last summer was incredibly difficult for us all due to a really bad period of ill health for our wee warrior. I’ll not get into the details, but we all came out feeling traumatised by the experience. Since then we have made a very conscious decision to try our best to get a family holiday together. Because air travel is tricky and warm climates are not ideal, I’m revisiting my own childhood with my three kids! We have been offered the use of our family’s holiday cottage and have readily accepted.

We’ve been thinking about where to stop along the way, what we need to bring, where Jacob can sleep safely, where we can visit that’s accessible, how we can get to the regional children’s neurosurgical unit in an emergency, how to prepare him for the “changes” that week and so on. It’s not easy to plan despite being a “staycation”, although lots of families plan MUCH bigger trips with children of all abilities so I have confidence we can do it. We’re all really excited to make these very precious memories together. Hopefully I’ll do another blog after we are back about what I’ve learnt from the inevitable hiccups along the way!

Maisie is 14 years old now, and quite a girlie girl. With 3 children I cannot dedicate the time needed to do all the girlie stuff as well as all the personal care she needs and the usual mummy stuff, cooking, cleaning, looking after my 2 boys and resting etc.

Lucky for us we have a lovely young carer called Phoebe who is 19 years old and is very girlie girlie. Phoebe is Maisie’s best friend, and they go shopping and choose clothes and jewellery together. Phoebe paints Maisie’s fingernails and toe nails and puts her hair up in funky styles. They often go to the park and have lovely walks trying to find cats and dogs on their travels. Maisie is desperate to have bunny rabbits because Phoebe has them! and she spends many hours at Phoebe’s house stroking the bunnies and laughing at their crazy acrobatics!

I feel like these are the kinds of things Maisie would do herself if she could.

Sadly, I think many disabled teenagers miss out on the “normal” fun, learning who they are and making the same mistakes we all make growing up.

I am glad that we have found a carer for Maisie, who should hopefully stick around for a while, that’s the benefit of having one that lives just next door! I’m sure Phoebe is having a wonderful affect on Maisie’s life, and although as her mum I feel I should be the one doing all this with her, actually, I think its better for Maisie and me that we do have some separation sometimes, and Maisie can express herself with her “best mate” rather than me her mum. I know I wouldn’t have wanted my mum being around me ALL THE TIME as a teenager. I’m sure Phoebe won’t be Maisie’s carer forever, but for now it’s working and everyone is happy, surely that’s all we ever want for our kiddies.

We’ve been warned about it, we’ve seen it coming, maybe we’ve experienced it in our own family situation. The evidence is all too clear and stark. We might be coming towards the end of lockdown restrictions, ‘Freedom Day’ as some like to call it. However, we are only just fully understanding the toll that the last 16 months has had on the mental health and wellbeing of our children. ‘Freedom’ seems a long way off for many.

Surveys, studies and research results are flooding in…

They share very challenging results. These include studies by The Disabled Children’s Partnership (DCP) of which I’m a member; as well as Sibs, which is the support organisation for brothers and sisters of children with additional needs. We need to be aware of this data as it helps us to understand and help our children better. To journey with them as we help them back from the mental health challenges that many of them are experiencing. Here are some of the ‘highlights’ from the studies:

The same report highlighted that due to delays to appointments and meetings; over half of children had experienced their condition worsening and their development stopping. It continued by showing that over half of children had lost the confidence to go outside of their homes. 40% had lost confidence in interacting socially with even familiar people like friends and family. All of this has resulted in 33% of parents saying that their disabled child now has depression.

As recently as April this year; 75% of disabled children were socially isolated. A further two thirds of them were not getting the support they were legally entitled to (DCP #LeftInLockdown report).

And this hasn’t been restricted to disabled children themselves. Sibs report that 81% of siblings’ mental health has become worse during lockdown, with 40% feeling isolated. This loneliness can often be because of having to shield to protect their brother or sister. Parents are affected in a similar way, with the Disabled Children’s Partnership reporting 60% of parents experiencing social isolation. It’s stark reading; I realise that, and we can’t just leave it there without some thoughts about what we can do to make a difference to these figures.

So, here’s my seven ‘top tips’ to help us help our family to improve our overall mental health:

1. Exercise! Try to get your bodies moving. That might be anything from a walk around the block to a full blown Joe Wicks style workout (they’re still out there on the Internet!). The more we move the better our mood, so get moving!

2. Exercise your minds too! Keep your brains active. That could be by doing puzzles, playing games, reading or telling stories. It could be anything that makes you all work those little grey cells a bit.

3. Eat well! For many, It’s been easy to fall into bad eating habits during lockdown. Comfort food can often seem to be a remedy for low mood. To resolve this, eating a balanced, healthy diet can make a real difference both to our bodies and minds. Drink plenty of water too.

“Seeing their face if only on a screen, will help us feel less isolated and alone.”

4. Go outside or let the outside in! The first lockdown was accompanied by some fantastic weather! Most of us were able to get outside and get our children outside and we benefitted from it. Since then, the weather has been less helpful, but some fresh air and a glimpse of sunshine can still lift our mental health. Even opening a window and letting the fresh air in can make a difference.

5. Talk with people! OK, we may still not all be able to see people like we would like to, but we might be able to phone, Zoom, FaceTime or whatever works for you. Hearing a loved one’s voice, seeing their face if only on a screen, will help us feel less isolated and alone. If we can visit friends and family safely then make the most of those opportunities. Days without social contact can affect most of us, but if we keep in touch we can keep on top.

6. Have fun! Make sure there is time each day for the things you and your children enjoy doing. If that’s watching TV or having time on the Xbox then don’t beat yourself up about it. Your mental health will thank you for it. Go easy on yourselves, some days just getting through without anyone being lost or killed is a win!

7. Look for the positives and celebrate them. Did something go well today, if so what was it? What made you or your child smile? Were there any wins? Focus on them, celebrate them, and repeat them!

Let’s be active, in every way, and look after ours and our children’s well-being!

By keeping an eye on our own mental health and that of our children’s, we can help to limit the impact that the last 16 months will otherwise have had. Let’s be active, in every way, and look after ours and our children’s well-being! And remember, you’re not facing this alone, there are lots of us out there trying to get through this too. Why not check in on some additional needs support groups, online groups, and even other families that you know. In fact, you can work through this together with other people that ‘get it’ too.

Cheering you on!

Mark

There really is nothing quite like a carefree Saturday morning with the sun shining, and nothing much planned for the day except a trip to the beach! I do recommend a hearty breakfast of blueberry pancakes and bacon with maple syrup before setting off.

One piece of equipment that has made such trips a HUNDRED times more enjoyable (for me especially) is our Delta all-terrain buggy for our 10 year old Brielle.

She has cerebral palsy and cannot walk as well as other conditions due do her premature birth.

I mentioned in another blog that our social worker actually put in a grant application for us and we had £500 given towards the purchase which was a big help as they are quite expensive- but trust me, such a worthwhile investment! I recently pushed Brielle around streets on Botanic Avenue in Belfast in her wheelchair instead, and it was NOT a fun experience. My feet kept knocking against her anti-tippers, the handles were too short for me and at their max height, it felt very wrikety.

So the Delta buggy…It handles so smoothly on trail paths to the beach, on stones and pebbles and even harder sand. We bought double sand wheels as an extra (for soft sand) but rarely have to use them as we’ve found the standard wheels usually do the job for our needs. Our trips to the beach, as well as walks as a couple (with B) and a family of 6, have hugely increased thanks to the buggy.

Another thing I wouldn’t be without especially in Northern Ireland is wetsuits for the girls! Brielle being the youngest of four gets all the hand-me-downs. For her, being in a wetsuit on the sand gives her so much freedom. Not only does it keep her warm, it gives her extra protection from the sun covering up more than a swimsuit, and protects her bottom as she scoots up and down the shore.

It let’s her have some independence.

She’s usually not too brave about being in the cold water much, but does like to walk handheld up and down the water’s edge and splash! Another favourite thing is to sit on a body board and be pulled along shallow water.

Sand for her is great for sensory play. She loves the feeling between her toes and fingers, and playing with dry, and wet sand. She often puts it on her head and to her mouth in experimentation- she’s been dubbed the “sand monster” by her sisters!

This summer we plan to reserve and make use of some of the water equipment on loan at the major beaches by the Mae Murray Foundation. Check them out online- it is free to register and reserve equipment like water wheelchairs, walkers etc.

Enjoy your days in the sunshine and saltwater everyone!