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| RDI Consultant, Jo Fokkes |
The
following is the story of a family who has found some normalcy through
our work with RDI. I initially heard from them in late 2009 and today,
they are feeling like a normal family...for the first time in their
history.
The family is Mum, Dad and three boys, two of them on the spectrum.
When
we first met, only the first child, Johnny, had been diagnosed. He had
been traumatized by his attendance at preschool with unsympathetic
teachers and was almost nonverbal. Sammy, the second child was not
diagnosed at that stage but was throwing huge tantrums and doing things
like opening the doors of moving cars. They had a baby brother, Thomas
and had just moved to a new area.
Following is part of the mum's first email to me:
September, 2009
Thank
you so much for your time yesterday. I'm still learning about ASD. My
husband has just started a new job so he has read very little and is
relying on me to read and explain. I think he needs to hear about ASD
from someone who knows more because during the diagnosis process we were
told very little about it, especially that siblings have a 1 in 8
chance of also being ASD. I'd like you to explain it more since I'm
struggling to explain how the small things can become big as he gets
older.
My
husband is in a rush to get Johnny off to school, but doesn't see that
he is nowhere near ready. I'm looking at alternatives like
correspondence since PDD-NOS kids get little support here especially as
they get older. Johnny does far better in mixed age groups. He tends to
like helping the smaller kids and finds the older kids more tolerant of
his differences. Kindergarten killed his confidence and I'm not making
the mistake again.
Since moving, we have been going to two ASD
playgroups and a regular Kinder gym along with lots of trips to the
local playground (always lots of kids). We have noticed how much happier
he has been and he's become very social introducing himself. I really
want this to continue with scouts and gymnastics as he gets older.
I
just can't seem to get across to family and my husband that at this
stage that the quality of relationships and his confidence is far more
important that "being normal" and having lots of friends. It's worse
when advice comes from friends and family that have no ASD experience or
knowledge. It's impossible to explain that I'm not being over
protective, but that my boys are not really at the same stages as normal
kids and set backs can last months or even years...not days like other
kids. So far my reading says I'm on the right track and I feel I have to
fight to keep that line. I feel at this stage that age-graded schooling
isn't in Johnny's or Sammy's best interests.
Two
and a half years have passed since that first email. The family has
moved two more times and we have continued our RDI work through Skype in
addition to three weekends with I spent with them. Things have not been
easy and they have had to make some lifestyle changes. Mum has been ill
and the boys have had to learn what boundaries are important to the
parents. The parents have learned to be the guides who have gradually
helped these boys become happy with themselves and able to tackle the
unpredictable world. School has been approached cautiously because of
Johnny's early experiences at preschool. He was homeschooled for about a
year and is now settled in normal stream.
Recently, after three months holiday in another state with the extended family, Mum sent this email to me:
February, 2012
Hi Jo, we're finally back and settled into home life again. So much changed over the holidays I don't even know where to begin!
Sammy
decided (himself) he wanted to be a big school boy like Johnny so we
had a few visits to make sure. He loved it so much he goes every day for
the whole day. It probably helped that he got Miss H, the lovely blonde
girl you met on one of your visits.
He is in a combined class because they felt he was too advanced and didn't want him to be bored.
Johnny
got his old teacher and classroom, so it was too easy for him. His
reading is still improving and is on level 7. Sammy started his reading
much higher than Johnny and I'm managing the situation so that both
feel good about their reading.
I
don't have any issues, I think due to the fact we had serious guiding
(GPR) over the holidays with Uncle Andrew, Dad, Granddad and Grandma .
I'm
not sure where to go from here because for the first time ever I feel
like we have a "normal" family. Sammy cooks his own porridge each
morning and makes his own special lunch. Johnny makes his own cereal and
lunch. They dress themselves, help Thomas get his clothes, make their
beds, brush teeth, and pack bags, with everyone ready by 8 so they can
have 30 minutes play time. Then we all scooter down to school with the
dogs!
I
have no real concerns at the moment, which I don't ever remember being
able to say. It's always been something or another. Looking at some of
the kids in Sammy's class, it's hard to tell he is the one with
Asperger's now. He gets to sit out during assembly because it's
stressful. To be honest though, I find 600 kids screaming in a hall
stressful too and so do some of the teachers, I think.
Sammy
still suffers pre-activity jitters, but it doesn't take long for him to
settle. We found that a healthy snack just after arrival at dancing or
school helps him settle. I think some of it has to do with blood sugar.
One of his new self management strategies is to pack healthy snacks to
eat, which he started on holiday by taking mangoes and milk on outings.
I'm
proud because I'm seeing some really shocking 'normal' kids at school
with anxiety and behavioral problems while he looks angelic!
Johnny
is just great. His speech is developing beautifully and Miyuki, our
exchange student, is his new buddy. He is learning loads of Japanese he
is keen to show off at school. He loves helping his Dad and in August he
is becoming a Cub Scout. He has loads of friends who have all been
helping Sammy settle in. On Sammy's first day he took him and introduced
him to all his friends and anyone else he knew so I was very proud. He
still gets communication a bit scrambled but he's always improving.
I don't know what else to say other than everything is like it should be (I can't believe I said that!).
Johnny, Sammy, Thomas, Peter and Vicky
Jo Fokkes is an RDI Certified Consultant in Sydney Australia. Click here to email Jo.
Posted
22 Feb 2012 9:18 AM
by
Elizabeth Alford