Toileting Fun

Toilet training a child without needs is hard enough. You know it is time they learned, but are they ready yet? do they understand when it’s time to go? will they be able to hold it long enough to make it to the potty on time? If not, can they tell when they have had an accident? Eventually they get there, and you do not have to carry a spare change of clothes anymore, and life becomes a little easier.

Toilet training a disabled child is way more complex.

However, toilet training a disabled child is waaaaay more complex than that! We rely on nappies (or pads as we call them now as it is a more grown-up term to use) pretty much 24/7. This was easy enough when my daughter was little, but now at 14 years of age it is quite an ordeal.

My daughter Maisie is nonverbal so she cannot tell me when she needs the loo and with her quadriplegic cerebral palsy, she is also a full-time wheelchair user and needs support with all her personal care needs. So, toilet training……is a bit of a mission.

We just need to try and keep trying until it works.

At home we have all the necessary equipment required, hoists, slings, supported toilet seating and a raised bench to enable Maisie to use the loo when she needs to. So, I do regularly take her to the bathroom, hoist her out of her chair, onto the bench, then hoist her from the bench to her toilet seat. Then she sits on the loo, and we wait….and then…. nothing! her pad is already soaked. Has she just been? Did I take too long getting her onto the loo? We go through this process about 5 times a day, and occasionally she will go. It can seem like such a waste of time some days, but we just need to try and keep trying until it works. Maybe it will or maybe it won’t, all I can do is encourage her and give her the time to learn.

I do hope eventually one day Maisie will get there, and we won’t have to carry a change bag with us anymore and life becomes a little easier.

Alternative Learning Methods, Belief, and Just a Little Bit of a Miracle

Over the past year, everyone from politicians, teachers and parents have worried about the impact the various lockdowns have had on our kids learning. For SN families its been an…interesting experience, shall we say. For some children its been a complete nightmare – the loss of their usual routine has been devastating, while for others being removed from the distress caused by struggling through a system that just doesn’t meet their needs was liberating. Just like neurotypical individuals, our children each responded to the challenges of the past year in their own way.

For his part, the Dude just went with the flow as he always does. Sam is rarely one to get into a flap, my boy is wise beyond his years really, and while there is no doubt he missed his friends and teachers tremendously, he adapted far more readily than most adults! Something that none of us anticipated however, was the enormously positive impact that the past year would have on our little boy’s development. While there was much worry amongst adults about how so much isolation would affect our childrens social growth, my small person was learning and developing skills in new ways.

Something we did A LOT of this year however, was play board games together as a family.

If you’ve read or listened to my previous ramblings you’ll be very clear on my thoughts around my prowess at homeschooling… lets just say it is not an area in which I excel! Something we did A LOT of this year however, was play board games together as a family. No, I don’t mean monopoly or its ilk. I mean the type of board games that develop cult-like followings. King of New York, Pandemic, Catan, Survive; Escape from Atlantis… to name a few (if you don’t know them, look them up. They’re good). The difference with these are that they require you to make decisions; some use dice, others a card based. But the thing they all have in common are that you need to make choices. We thought nothing about this, other than we were all having a lot of fun – Sam adores board games, especially the ones where he can wipe out his parents playing pieces with a single move (King of New York), or where we have to work together to defeat a threat (Pandemic… strangely topical that one). The significance of these hours of fun spent together wasn’t apparent, until Sam returned to school…and everyone noticed the huge developmental leap he’d made in his cognition. His visual skills have surged – for a child with severe cortical visual impairment (registered blind) this is enormous. His communication has jumped forward too, as has his ability to make choices, express himself, and to understand cause and effect.

Our children are nothing short of miraculous. They will find their own path and their own ways to learn, in their own time. All we need to do is what we do best already… love them, play with them, and believe in them. The rest will come.

A Grandparent’s Love

My in-laws visited this morning. We had a chilled brunch together and Granda did his usual duty (which he is very happy to and insists on) of PEG-feeding Brielle, who is 10 and has never eaten anything much by mouth.

After all of us sitting around in the living room catching up and watching the racing, Brielle was restless so Granda took her outside and let her scoot about on her pink wiggle car, up and down the lane. She is FAR too big, too tall for it now, but still manages it somehow! Hoping to find her something bigger for big kids soon (as opposed to the toddler model!)

When they were back indoors; Brielle sufficiently exhausted from her exercise, she cuddled up nice and close to Granny and Granda on the couch. In fact, she was almost sandwiched in-between them. Looking back and forth between the two of them and studying their faces. Brielle is mostly blind so she likes to look nice and close and really study a face.

They would literally do anything for the girls I know.

Just looking at the three of them, in that moment, my heart was just moved. I felt so thankful for such loving grandparents. For all my girls. There’s such a special bond and love that exists between them.

My hubby and I have been able to leave for weekends away, and weeklong trips to the States (pre-COVID of course…it feels like we’re never going to travel again!), only because Granny and Granda so kindly stayed in our house to look after our 4 daughters, Brielle needing the most attention obviously.

They have slowly but surely learnt some sign language, have mastered Peg-feeding, assisted with her mobility and working her many pieces of equipment. Furthermore, they have all-around ALWAYS been there for us as parents, and for their grandchildren. It’s a selfless, unconditional love which I am so grateful for.

She was extremely sick and fragile and fought for her life for over 6 months in hospital.

Over 10 years ago, Granny flew into Seattle from Northern Ireland. I was 25 weeks pregnant and on bedrest in hospital. She was coming to mind our 3 older girls (who were 5 and under) so Ian could work and I could try to rest in hospital and praying baby would stay put and be ok. Little did we, or she, know, that the very next day Brielle would be born by emergency caesarean, weighing in a 1lb 13oz. She was extremely sick and fragile and fought for her life for over 6 months in hospital.

Granny was there for our girls. She has been there for our family, for Brielle’s first 3 weeks and has continued to be there, supporting and loving. Thank God for Grandparents – there is nothing like them.