I thought this was such a great idea, and a fantastic way to answer questions you might feel a little awkward just asking... so, here's your chance!
Don't be afraid to ask. We'll appreciate your questions and know they are being asked because you care.
We want to increase awareness and understanding of all things cerebral palsy... of Dexter's vision impairment, of his cancer journey and, even, his premature birth.
Do any of you have questions about Dexter's life with cerebral palsy?
Is there something you are curious about?
Something you'd like to ask us?
Just leave us a comment and we'll try to answer.
Here are some questions we were asked:
Hi Dex. Yes I do. I have followed you for a little while and you seem like such a bright boy. I would love to know if the cerebral palsy is mainly a physical thing or if it affects you much mentally as well?
We are not sure yet, whether (or how much) Dexter's cerebral palsy will impact on his cognitive development. So far, we are hopeful its more of a physical thing, as Dexter has always seemed to learn new things quickly; he understands what he is trying to accomplish, physically. He knows who's around him and has a good sense of humour and a cheeky nature. We have not done much 'teaching' with colours and nothing with the alphabet, etc. He does seem to understand the idea of counting, and responds to comments such as "Three more steps". He remembers games and activities.
Hi Dex and family - I have a question. Is your vision impairment 100% or can you see shapes and colours and recognize Mum and Dad?
We are not sure about his vision. Some days, he can see us. Some days he can't. On good vision days, he laughs more or his eyes lock on to things and he really looks at them. It's weird, but you get a really strong sense that tells you when he can see. Dexter seems to see the colour red best.
Oh, and a second question - do you love Charlotte or is she a pest???
He really loves Charlotte and has done, right from the very first moment he lay beside her... maybe even earlier. He is always moving, but when she is nearby, he stops - so he doesn't hurt her. He's concerned when she cries, unless he is told she's ok. The first time he moved across the room was when Charlotte was crying and Lenice was in the shower (sorry, Lenice!). When Lenice got to them, moments, later, Dexter had crossed the room and was holding baby Charlotte's ankle. She can put fingers in his mouth and nose and pull his hair and he won't complain. We've started to help her squish Dexter, and he often giggles at that. She is very noisy, though! *He does, sometimes, kick her back... Lenice was told to expect bruises on Charlotte, when she starts walking, as Dexter may start tripping his 'able-bodied' sister. But, Dexter wouldn't do that! Surely!
Can you speak, Dexter?
Dexter is non-verbal, but we always speak with him. Words we try to teach him the most are: more, hungry, help, ouch, get off, stop, Mum, Dad, Charlotte, love you, and of course, his crazy aunt teaches him Carol. There are words locked in there. When Dexter was sick, he was moaning and crying and clearly telling us 'help' and 'ouch'. At dinner, we get the occasional 'more'.
Lenice used to read him Roald Dahl's Revolting Rhymes in the hospital during his 'premature days', and they both enjoyed that. They also read "The Places You'll Go'. But honestly, she's gotten a bit slack with reading since Charlotte came along. We get a book pack once a month from Vision Australia and it includes a braille book and sensory toy, so we read those.
As for toys, he hasn't ever really played with any, he has always been too serious (4 months in the NICU and cancer will do that to you!). His vision impairment would prevent him from being able to always see his toys. He always seems to respond well to noisy toys and, at his last CP Alliance appointment, they had a dancing and singing Elmo and he thought that was great. He lifted his head to find it and, when it stopped, he made actions to make it go again. Hamish has always been with him and he does like to cuddle him.
Dexter likes food! He'll eat whatever is fed to him. Being non-verbal, he doesn't have the option of asking for specific foods. He does enjoy his Mum's spaghetti and her fruit & cous cous mixes. For desserts and treats, he likes white chocolate and also, ice-cream. He developed an egg allergy after his chemotherapy treatments. Dexter is hungry when he wakes up, so he loves breakfast! He's a good eater and, as a boy with cerebral palsy, that's a great thing!
He does! He loved swimming and being in the pool, and was making some great progress with his strength and movement, when he was diagnosed with cancer. During treatment, he was not allowed in the water, so missed an entire summer of swimming. Now, we have to ease him back in, as he is a little wary. I think he loves the extra movement he gains, in the water. (He needs total support!) We're looking at adapting a seat/swimming noodle and some netting, so we can drag him through the water and he can have even greater 'freedom'.
Dexter has always loved the bath. He loves the splashing and loves to be dragged up and down the length of the bath. He's very tall now, though, and is quickly running out of room!
He has a small 'blow-up' pool, which he can use in summer and loves.
**He doesn't like to drink water, though!!
Sensory toys are things Lenice has been making since he came home. He had bright hand painted dishes filled with rice and salt and paper cups that he used to kick all the time. She's made bottles with rice and pasta and covered them in black plastic with some shiny silver pieces.
When he was first born, Lenice got herself lots of striped shirts and black and white clothes. She doesn't wear them so much now because they don't fit her....she says she was skinny when he was in the hospital.
Dexter as bells on his high chair so that when Lenice is getting dinner ready, she can hit them and he can try and find it. He has a black mat on the high chair, for when she gives him sandwiches, so he can try and find them. The contrast of sandwich on black is easier for him to find and see.
Lenice has made him a light box, which is lit from below, so toys and objects placed on the top are easier to see.
Lencie tries to get him / make him anything she find that I think will help.
Dexter has his standing frame (over $6000) and is in it for two hours each morning (where he plays with the ipad and apps for vision impairments or a bowl of playdough or balls, etc)
He has foam pieces, home made, which help him sit better in his high chair for feeding. He tends to lean as he concentrates on chewing and eating, and not on sitting. The foam provides additional support.
Dexter has leg wraps - which he does straight legged sitting in, for about half an hour at a time.
He has foot orthotics, which cost about $1000 a pair, and which Dexter will always need. As he grows, they need to be replaced. His current pair are too small, so he is not using them at the moment.
Dexter was lucky and was given a thera-togs suit ($500), which he wears most days, for as long as he can tolerate them. We have seen noticeable improvements in his movements and strength since wearing these. They seem to 'switch on' his muscles.
Dexter spends about 30-60 mins in his walker, which was donated by an incredibly generous donor ($4000). This walker gives Dexter freedom and independence. He's currently walking laps of the footpath outside his home. Some days, he does very well. Other days, he doesn't go very far. His current PB is about 190m in about 40 minutes.
Dexter has blankets rolled and positioned in his bed to prevent him lying the wrong way.
He has a specialised pram, which provides the additional support he requires.
He has a Little Room - sensory box/room, which Lenice designed and had made. This gives him quiet time and teaches him to see and play. Many of the 'toys' in the Little Room glow in the dark or make noise, like bells.
He has lots of noisy toys and toys with lights.
Dexter has massages after his bath at night, to ease his muscle cramps and he has to do lots of stretches and exercises.
Through Vision Australia, he receives Braille books for weekly loans and is learning to use his fingers to feel the pages.
Dexter has a very simple communication switch, which he can press to repeat a phrase or word Lenice has spoken in to it (This is currently his only form of communication, as he is non-verbal). Hopefully, he may get a more complex switch later, but it will cost thousands of dollars.
He's going to need a bed like a hospital bed, which can be raised and tilted, to make it easier to lift him out of it. Or, he will need ceiling hoists, to help him be lifted and carried. (For the bath, too)
Hopefully, he will get a very modified and supported bike, so he can ride around on it - with limited vision, which will be fun for Lenice and Andrew!
And, Zoe. He sees Zoe once a fortnight for physiotherapy - weekly if we were rich enough! She is fantastic with Dexter and he works well for her.
Unfortunately, Dexter has no current access to a speech therapist or an occupational therapist.
Lenice and Andrew want to get him into the pool every week, for swimming therapy - to loosen muscles, develop muscles and for fun.
His car seat has additional support.
His tomato chair is designed to help him relax and he uses that each night.
He also has bowen therapy massages every fortnight.
There's hope of trialing him on oxygen therapy and there's upcoming therapy in Adelaide to teach him to help feed himself, etc. (Again, thousands of dollars)
Dexter will always need specialised equipment to do what most kids do without thinking. He's lucky we love him!
*We are just learning about most of these things, too. Hope that helps!
At the moment, all of Dexter's therapy is done at home.
Unfortunately, Dexter does not have access to an occupational therapist or a speech therapist. His private physiotherapist, Zoe, is fantastic and goes well beyond her job description to help Dexter.
Through her, Lenice has learned exercises and stretches (about 20 minutes) which are done daily. Zoe has taught Lenice the correct ways to position Dexter in his standing frame, walker and bed.
On average, Lenice spends at least five hours a day, ensuring Dexter receives his exercises, stretches and therapy. This includes straight-legged sitting, crawling, sit to stand movements, walking, standing, leg stretches, massages, independent sitting and kneeling.
Speech therapy continues throughout the day.
Yes! Dexter has an amazing sense of humour, even if we don't always hear him laugh. He has a great sense of fun, even after having so many tests and procedures done on him. He loves being tickled (thought rarely laughs) and does like to stir us on many an occasion. There's a good chance he has his great grandfather's cheeky nature. He's an easy kid to love.
Breakfast, then straight into the standing frame for anywhere up to 2 hours. When he gets out, stretches (which hurt him) and a bit of floor play.
Morning tea (hand fed, as he can't do this himself) then more time on the floor. This is when Dexter spends time in his sensory box or Lenice does exercises with him, that are hidden in play.
Lunch then bed. He rarely sleeps, so Lenice eats and then gets him up to use his theratogs suit and then his leg wraps and she incorporates afternoon tea into that. Once Charlotte wakes,he's outside for the walker. (It takes three trips - one for each child and one for the walker and toys for Charlotte.) This is usually an hour.
The dinner, toilet, bath routine follows that.
Then, Dexter sits in the tomato chair, to teach him to rest and then it's bed once Andrew is home. Sometimes, Dexter falls asleep straight away, but most nights he doesn't go to sleep for a couple of hours.
When we have appointments, we still have to try to fit this in.
Lenice is professionally a rehabilitation counsellor and PE teacher, but should have a degree in OT and physiotherapy!
Thank you for these questions. We hope we get some more. If we do, we will add them to this page, and answer them. So, if you ask a question, pop back later to see the response.