TEENAGE ALERT: PLANNING
FOR THE NEXT PHASE
by Seana Smith
Our lovely boy Tom is 11 years old now, eight
years have passed since we realised that he has ASD. Our family
life no longer revolves exclusively around Tom, what a relief! His
ASD used to fill up all the spaces, but these days ASD is just one
part of Tom and one part of our family life.
There are four children in the family now and
each needs a turn on centre stage, whether that means a toddler
who is starving or needs a nappy changed, or second son Nathan needing
some special snuggle time with Dad.
Our ‘new normal’ as a family of six, is often
pretty damn normal. We certainly look normal from afar and sometimes
I get a real shock when things happen that make me see how clearly
ASD still does impact our lives.
Sometimes we ‘forget’ that Tom has ASD and we
expect him to behave just like a typical child. We get annoyed with
him if he is clumsy and drops things, or doesn’t understand what
we are saying to him or if kids come round and he gets overloaded
and withdraws from them.
We had a huge fright recently when he became horribly
obsessive and then threw a series of massive, explosive tantrums,
and we had to rapidly make some changes to bedtimes and sensory
stimulation levels. We also dusted off our trusty copy of Boardmaker
and made some visual schedules again. It was weird to have a child
who could be so very autistic one week and then go off and have
a terrific and problem-free time at school camp the next week. No
wonder we’re still confused.
But that’s high functioning ASD, Tom looks so
normal and is so normal some of the time, why can’t he just be OK
all the time? Does he really have to converse around the topic of
milkshakes quite so much… and what’s the thing about having a pork
pad thai EVERY Sunday night? I still do sometimes wonder whether
he couldn’t just pull himself together and snap out of it. Oh dear.
Having the twins in 2006 threw a real spanner
in the works in terms of having time to work with Tom. Over the
past two years, we have done very little that is therapeutic and
are lucky that he has still progressed, probably thanks to his very
positive school environment.
But the time is coming to focus on Tom a lot more.
There are two more years before high school. Finding the best school
will require much effort and mental fortitude. Preparing him and
making the transition process will need a lot of time and effort.
Planning for puberty and adolescence must also be done and we are
sure to need a lot of help with that.
Tom also has lots of learning difficulties, and
he does have some 1:1 and small group lessons at school. It was
a relief when we let go of the idea that he could keep up with the
rest of the class in all subjects. He can’t, and we knew that even
if we worked him to death academically, he would always have issues,
the ones typical of his type of ASD, plus learning difficulties
with maths. Nowadays we always chose family time, time to play sport
and time to relax over working him to the bone.
The spectre of the teenage and young adult years
can bring us out in a cold sweat. Probably the best thing we can
do as parents is to be in the best mental state as possible ourselves
and to make sure that we work as a team. That’s a pretty big ask!
The good thing is that with our eldest child being the one on the
spectrum, we will, as ever, learn the hard way with him and be able
to put those experiences into practise with the other three. Well,
In the longer term, we don’t know what the future
holds for Tom, nor for the rest of the family. This of course, is
true for everyone. It does concern us that Tom functions well enough
to live in mainstream society but he lacks so many skills that one
needs to survive in it: ‘street smarts’, negotiation skills, knowing
when someone is ripping you off.
However, we chose, most days, not to have fears
for the future nor regrets over the past. We have learned that all
we really have is the present, and it’s best to make that positive
and fun for us all. Let the future take care of itself.
The children who do very well in ABA programs
are sometimes referred to as the ‘best outcome’ kids. At the end
of his program Tom still tested as having a massive speech delay
and an IQ test showed a score of about 70 (borderline for intellectual
disability.) So that is definitely not ‘best outcome.’ But I think
that our family had a terrific outcome from early intervention and
from intensive support at school in the first few years. It cost
us a fortune, but it has been well worth it for us and in ways that
cannot be gauged by language and IQ scores.
So here are a few of my personal assessment scores
on where we are today:
The Kids Club Score: When we
send Tom to holiday programs or to kids’ clubs, he needs no support.
I sometimes tell the carers that he has a language delay and suggest
they speak slowly and clearly if he seems not to understand something.
But all those hours, weeks and years of teaching imitation skills
have certainly paid off. If Tom is unsure of what to do, he just
copies the other kids.
The Cricket Club Test: In his
third year of cricket, Tom is doing really well. If we told the
other parents he has ASD, I’m sure they’d think that he was fine,
but that we had Munchausen’s Syndrome by Proxy. However, any canny
ASD parent would see that, when not on the field, Tom doesn’t chatter
away and socialise like the other boys do, and a knowledgeable observer
might spot the odd stim.
The Go Anywhere, Do Anything Criteria:
There’s really nowhere we would avoid going and nothing we would
avoid doing because of Tom.
I can’t say the same for the twins!
There are still a few assessment criteria we need
to work on though:
The Playing with Toddler Siblings Test:
It is so easy to see the core deficits of ASD in Tom’s interaction
with his twin toddler siblings. Tom just doesn’t have the intuitive
ability to adjust to their level and to their rapidly changing moods.
He can be far too rough with them, even though he really loves them.
The ‘What’s He Up To Now’ Test?
Tom is not great at keeping himself gainfully employed and we like
to know exactly where he is and what he’s up to. Otherwise we can
get surprises like ‘Do you know your son is on top of the roof’
or ‘Mum, I was just seeing what happened if I poured the honey into
my hand.’ Our radars are always switched on as they have to be with
much younger children.
Putting People Before Electronics Assessment:
If he had his way, Tom would spend all his time playing PS2 or computer
games and would he would lose all his social skills. We are very
strict about how much screentime he is allowed and have to deal
with this very behaviourally.
The Table Manners Test: We need
to work hard on this one as Tom is a messy eater, uses his hands,
jumps up from the table etc. We do know EXACTLY what to do: comedy
video models of good and bad table manners, clear descriptions of
how to eat well, video self-models of Tom eating properly, then
tick charts for good table manners with the reinforcer being a meal
out with Mum. We know that will work; we just need to get a grip
and do it.
The Taking Mum a Cup of Tea in Bed Test:
This is the big one, and we have a long way to go!
Personally, I have a few plans in place for keeping
healthy and happy. Sleep comes first, it’s not unusual for me to
go straight to bed after putting the four kids to bed. Even if I
don’t go straight to sleep, just lying in bed reading or watching
TV feels like luxury.
Over the years I have realised that I need to self-soothe, so I
have a little list of things to do when I start to get harassed,
starting with a cup of tea and going all the way up to getting away
for the night with a friend. I also attend a weekly self-development
group meeting which I find invaluable. It isn’t religious, but it
is spiritual. And I do pray, not sure who I am praying to, but it
is always a great comfort to me in times of distress.
I think it’s important to have lots of little
things in life that you find enjoyable, things that are meaningful
just to you. I really do try to stop and smell the roses, not to
rush around and to keep calm. I love the book Buddhism For Mothers
by Sarah Napthali and keep it in my bedside drawer to regularly
dip into. Having been seriously depressed in the past and seriously
hysterical too, I know I need to look after my mental health, for
my own sake and for the sake of the kids.
We know that our family has been let off very
lightly by ASD and we are tremendously grateful. ASD is a very serious
thing to have, but at least we have the milder version to deal with.
I believe that Tom can always keep improving, and that Paul and
I can keep on growing as people and parents too. It’s been a relief
to let go of the idea of total recovery. We don’t expect perfection
in our lives, not in ourselves not in the kids…and come to think
of it, not in this book either.
This story is reproduced with kind permission
from a chapter of The
Australian Autism Handbook published by Jane Curry Publishing
and distributed by Pan Macmillan.
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