Look at this picture, the mama protects her little ones. Likewise, so do we. Mothers of children with special needs are like her. Tender and loving to our little ones, but we can tear you into pieces too. Here is a story of a loving mother, she shares her experience in her own words.
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My son has Aspergers.
Such a simple statement but it
has impacted our lives so much. I have avoided writing this, pushing it all the
way to the end of my TO-DO list for the last month because truly, sometimes
even thinking about it can hurt. It is like opening a can of worms. I fell into
a deep dark hole when we first found out about him and it took me a very long
time to crawl out of it and just live again. So I was not too keen to revisit
those “dark hole” years.
In this short entry, I will write
about the early years after discovering my son’s condition – the struggle and
the reactions from those around us and also the strategies we used to help him
- and ourselves.
When I use the term ‘us’, I am
referring to my husband and I. When we found out we were pregnant shortly after
the wedding more than a decade ago, I was overwhelmed. I was fresh out of
university, just started my first job and just married a stranger (mine was an
arranged marriage haha!). So when my precious little one was born, amidst the
flurry of managing a new job, new marriage, new house, new set of family
members and new everything, I did not really pay much attention as to whether
he was developing according to a neurotypical’s developmental milestones.
When
he did not seem to like my cuddles, I thought maybe I was not touching him
right. When he still did not talk at 18 months, my in-laws said boys develop
speech later, so – OK. However, when he was still walking on tiptoes at 30
months and he had huge tantrums over something as minor (to me, at least) as
the weather or food texture, I hit the jam break. I have heard of the ‘Terrible
Two’, but I could sense that something was not really right. And true enough, I
soon got a call from the day care centre which I have enrolled him in just a couple
of months earlier. Apparently, he had been displaying ‘certain odd behaviours’
in class, e.g. walking around the classroom, disinterested in lessons, rolling
and pressing himself against the floor, licking the chalkboard and refusing the
food offered during breaks – escalating into screaming fits if the food
contained chopped fruits and vegetables. They thought he just needed adjusting
but it had been three months and they said the staff could not handle him. So
they told me to withdraw him.
I think that was the turning
point for me. I began really observing him and reading up on a neurotypical’s
developmental milestones, and that was when it dawned on that my little darling
was not ‘normal’. As if coping with that was not difficult enough, the comments
from others started coming in – ‘Why does he walk like that?’, ‘Why does he
behave like that? You should teach your son to behave, you know.’ To cut a long
story short, I did not know what to do with my adorable little gem. I became
depressive, quit my job and cut off all contacts except with my mother. I could
remember one very low point during that period when I was alone at home with
him, trying to manage a tantrum. I was so frustrated with him that I just
packed my little monster into a carton box in a bid to contain him. Yes, I was
crazy and desperate. And yes, I tore up the box and took him out the very next
minute.
Anyway, after the initial drama,
thank goodness my mum and the never-say-die part of me eventually took charge.
We consulted a pediatrician who worked with us to manage my little sweetheart.
At that point, no specific diagnosis was made but the doctor identified issues
that he was having, primarily sensory and social ones. (The diagnosis was only made when my son was six, as we were debating
whether he should be in mainstream or a special school. Anyway, the final
diagnosis was mild Aspergers so he is now in mainstream.) He was aversive
to many textures, especially furry, hairy and woolly ones. And he had
vestibular issues. He got cranky and started getting nausea when in moving
vehicles or when taking rides. And yes, he basically lives in a world of his
own. At about three years old, he could already talk but he still pulled at my
hand to get my attention. And he showed no inclination to interact with his
peers of the same age.
The doctor referred us to a slew
of support services and in the end, I chose to focus on occupational therapy (OT)
for his sensory issues and social play groups with two different centres to
encourage social interaction. We also placed him in a day care facility which
was equipped with the trained professionals to manage children with special
needs. When he was five, I also embarked him on the Kumon journey. I know that
not everyone is a Kumon fan. I just felt that their learning style suited my
son. It was very structured and time-controlled, the steps are very systematic
and predictable and the repetitive practices helped to reinforce his learning. Also,
Kumon helped prepare him for the eventual school syllabus so that he already
has a preview of the content to be taught prior to the topic being taught in
class. Believe me, it helped tremendously with his self-confidence. Beyond all
these sessions, based on the recommendations of the OT and teachers, we also
engaged in external activities to help him generalize the skills he acquired
during the school and therapy sessions. So lots of experimentation with
different textures of food, clothing and tactile materials. And loads of
vestibular stimulation in the form of rides in amusement parks and in cars,
buses and planes even. And when he grew older, we started him on social stories
and social scripts to help him along with his interaction with his peers.
Visual schedules work great to help him structure his day and to promote
predictability. We used to have it on cards and notebooks for him but when he
grew older and got a bit self-conscious about his schedules, we recently got
him a handphone so that he can have his schedule in the handphone. More age-
and socially-appropriate, we thought. Recently, he told us he has a best
friend. I was ecstatic. I mean – my ‘live in my own world and talk all day
about my LEGO and World War II obsessions’ son, has a best friend?! WOW!
So
during one of the school events when we were in his school, he introduced his
best friend to us and I could have hugged that wonderful boy for giving my son
a chance at friendship.
Well, there are hiccups. My son tells me that some days, he is more comfortable
texting rather than talking directly to his friend so they text to each other
even when they are face to face sometimes. Oh well – I guess we can work on
that.
So you see, we were in denial for
quite some time, but for the last few years, we learnt to accept - with a good understanding
of his condition, being kind and tolerant – not just with him but also with
ourselves and with others, and we used humour - in a kind way. I sometimes
teased him that he is taking up my talk time when he talks non-stop about his
World War II stuff and I still offer him hugs and do not get upset when he does
not return or does not seem to want it. But every time he returns a hug, which
is becoming more often these days, my heart melts.
I also think it is important to have realistic
expectations. My son will sit for the PSLE next year. My husband and I have had
discussions with him on his grades and together, we have set high but
realistic, achievable goals for his PSLE. This is because, even as I make
accommodations for his special needs, I need him to know that he cannot and
should not use his condition as an excuse to not push himself to greater
heights and excel.
I do all these because I will
eventually move to my next stage of intervention with him – empowerment. We
will all die someday. So before that time comes, I need my young man to not
only be able to manage himself, but to eventually be independent and empowered
enough to lead a meaningful life, even
when I am no longer with him. This may sound cliché but I want my son to not
see the disabilities, but to be thankful for his abilities and celebrate and
capitalise on those. And that is the same mind-set that I carry with me in my
work with special needs now. I mean, God made all of us unique and wonderful,
didn’t He? So we should likewise carry on with his work and let the world see
what wonderful beings our individuals with special needs are. Yep, they truly
are a WONDER.
Thank you.
Special thanks to this beautifully-spirited mum, who chose to share her heartwarming story with all of us. She chooses to remain anonymous, as she blesses us with her story.
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