I recently had a bad PWS appointment
experience. This was because when I
arrived at the clinic, I was told by the occupational therapist whom I was due
to see that she could only proceed with the appointment if my son's father was
also present. The rationale, quite simply,
was that the advice she intended to impart was so important that we both needed
to hear it. I was flabbergasted. It is true that for the first few months of
my son's life both his father and I did attend every appointment. This was until we realised how unsustainable
this approach was. I was tempted to
point out that if my
husband and I had attended every appointment my son has
had (over 600 by now) it would be impossible for either of us to hold down a
job, which, of course, is necessary for all sorts of things, including paying
for therapy sessions. But, I think that
my son needs OT support, and OTs are hard to find in my area, so I said nothing
and politely walked away. And inwardly
fumed.
After I had stopped fuming I started to
reflect on the many other PWS appointments and interactions that I have had
since my son's diagnosis. And the truth
is that while some have been terrible, many more have been excellent So, I decided to make a short list of some of
the many anonymous people to whom I am grateful for making my family's PWS
journey so much easier.
1. I am grateful to the community nurse,
who came to my house every two weeks for 3 years after my son was born and
taught me the rudiments of physiotherapy, speech therapy and occupational
therapy, while all the time encouraging me to aim high for my son.
2. I am grateful to the physiotherapist who
observing my infant son poking around at the workings of a toy casually noted
that he may have a engineering career ahead of him. She probably didn't realise the impact of her
words, but they led to believe in possibilities for my son's life that others
had written off as impossible.
3. I am grateful to the school principal
who on my first visit to his school bashfully admitted that he hadn't thought
about the potential dangers associating with having fruit trees at the school's
perimeter and immediately offered to have them removed. I told him not to remove them, but left his
office happy that he would do whatever was necessary to keep my son safe.
4. I am grateful to the psychiatric
consultant who didn't tell me that there was a 18-month waiting list for ASD
assessments in my area and arranged to have my son assessed within 2
months. I only learnt of the waiting
lists much later.
5. I am grateful to the physiotherapist who
with great patience and confidence made my son believe he could cycle a bike
without stabilisers. She was right!
6. I am grateful to the (overweight!) local
doctor who every time I meet him has the good grace to sincerely and
enthusiastically compliment both me and my son on my son's healthy weight.
7. I am grateful to the special needs
assistant who has been my son's shadow for the 5 years since he started
school. She has cheered him up, and
calmed him down; she has kept him safe and kept me sane; she has helped him
make friends and allowed him to learn; she has boosted his confidence and expanded
his horizons. Most of all she been his
friend.
8. Above all I am grateful to the obstetrician
who, having cared for me during my pregnancy and after the birth of my son,
refused to accept the considerable payment he was due for his services.
Why does this stand out for me more than the
others? Because it was the first
experience I had of a random stranger standing by me in recognition of the
challenges posed by PWS. The solidarity
he showed to me when I least expected it gave me hope that the community in
which I live would continue to support my son and my family. I am grateful for all that support. I also believe that my son's positive
experiences of support will lead to him
being able and willing to support others when the opportunity arises. I fully expect that someday random strangers
will also be grateful to him.
