The following extract, taken from Naturally Better, outlines the experience of one sibling through working with her brother with ‘special needs’.
As I go to print… (Gryffin was 32 months old)
My husband has sent me to this place by the beach to finish my book. I asked for sun, a beach and a room with WiFi and here I am with this luxury of time to reflect and get it down in writing.
Part of my reason for doing this is to download phase one of our journey in preparation for phase two – we’re not out of the woods yet neurologically; there is still work to be done and so I have to recharge and go home to begin the next round of therapies. Speech needs work and growth too as Gryffin is a little on the short side. Although he is big by Down syndrome standards, with parents both over six foot tall there is room for improvement!
I called home last night to check in. Knowing we need new helpers for the program and having left the school where we had a goldmine of help, Bronte (now 12) had sent a letter to her new principal asking if she could please make a presentation to the other 50 students in her year level to explain about Gryffin’s diagnosis, his program, what we hope to achieve and how the students might help us if interested. Bronte has only been at this new school for 6 months, having graduated from Montessori last year – she is now in first year of secondary school.
Bronte’s letter to the principal was well received and she was asked to present to the students today. So Bronte asked if she could read to me the PowerPoint presentation she’d made to present to these 50 students with the aid of an overhead projector and big screen in the media room at school.
Anyone who is concerned about the effect of other siblings on the amount of time required to help a child with a challenge would do well to read this presentation. Bronte has produced a beautiful, insightful, informative piece of work with explanations so simple as to help her peers understand what we are doing. Neurology 101 for year seven. This whole thing is Bronte’s idea and what confidence and compassion she shows. Not one shred of nerves did she have, just excitement about being able to include her new friends in this, our wonderful exploration into the human condition and how anyone can make a difference.
Along with me and my husband, our girls have had to redirect their attention away from sport outside school and other extra-curricula activities, to help with the task at hand. Despite the very occasional protest, our girls have come through this experience stronger, more confident and far more knowledgeable than would have been achieved otherwise. And they now are back at basketball and singing, etc, knowing that their little brother is as wonderful as can be, because of their help.
Bronte’s school presentation
This is DNA. It is what our chromosomes are made of.
Each human cell has 23 pairs of chromosomes.
In Down Syndrome, the 21st pair of chromosomes
has a 3rd chromosome instead of being just 2.
This chromosome can affect brain function, looks and movements.
This causes most Down syndrome people to have roughly the same looking features.
Here you can see that Gryffin had the classic Down syndrome features when he was little.
This program has changed his appearance and behaviour.
Here is a picture of him just the other day.
As you can see, his look has changed from the picture before.
With simple activities like walking and other exercises,
Gryffin’s brain function is being improved.
As you can see, over time, the results have been more obvious.
The results from this program are amazing and rewarding,
But the level of commitment and time it takes to have the program
going full time is huge. We got onto this program when Gryffin was 2 months old
and we have had it going since then. He is now almost 3.
There are certain things we do, like walk and run, that take lots of brain function to achieve.
When we walk, the brain functions like this:
When this left part of the brain is in use, the right foot is stepping forwards
and the left hand is out in front.
This goes the other way when stepping with your right foot.
With the program we have been and continue to use,
Gryffin’s Down syndrome is being treated as a brain injury.
This means that the brain does not develop as it should
if he were an uninjured (or normal) child.
The program Gryffin is on gives exercises that teach his brain to move his body normally.
It can be very difficult for someone with Down syndrome
to do a lot of things that we all take for granted.
When a child is growing or developing, the milestones that they pass through
in the first years of life, ie independent movement of arms and legs, sitting up,
commando crawling, cross pattern crawling, standing, walking, running, hopping,
skipping, jumping, etc are all done in a particular sequence and
each milestone ignites a different part of the brain and
stimulates that part of the brain’s functions and activity.
As well as the physical program we have Gryffin on, there a number of
other parts t0p the complete program. We have him on a reading program,
we have him on a nutritional supplement program to help boost his immune system,
we have him on a swimming program, we have had him on a number of different
alternative natural therapies. As a result of these combined programs,
Gryffin is very rarely if ever sick, the usual physical complications that
most people with Down syndrome have are either non-existent of diminishing in Gryffin.
Taken from Naturally Better – available in ebook and hardback. Click here for more information on how to order.