Where to start…this was the holiday that had to happen I
guess, if I was ever going to get around to writing the blog I needed to write.
It’s funny how getting away from the everyday life somehow makes the everyday
life so much clearer.
Never has it been more clear to me than on our Bali holiday that
Lachy is ‘different’. I thought he would really embrace the Bali culture and
chill out. Unfortunately Bali time just didn’t seem to agree with him. His
anxiety first peaked at the airport and only let up for the rare breathers in
the pool or playing computer games in kids club. Don’t get me wrong – he loved
so much of the holiday, and had so much fun, but for us it was an absolute head
fuck explaining all the things that were going to happen, that might happen, or
that might not happen. Trying to cover all bases and have his mind clear about
what was going on was just about impossible when we were running on Bali time
as was everyone else. And when plans change for no reason other than your mum
wrote herself off and started throwing her guts up, everyone else has a little
chuckle but his whole world turns upside down. Good work Mum L I think it’s fair to
say he could love Bali, could absolutely thrive there, but like everything else
he is presented with, in his own good time.
So what exactly is it that is ‘different’ about Lachy? Apart
from suffering anxiety, I’m not entirely convinced we’ll ever get a diagnosis
that fits but here’s what we do know.
He was born the best little baby a Mum could ask for, slept
through from very early on, batted his beautiful lashes and smiled at anyone
and anything that caught his eye. A few people warned me that the good babies
turned out to be the worst kids, I may have even passed on this info to others
with good babies! His first word was ‘pider’ for spider and he spoke sooooo
well at home and with close family and friends. Out and about he would rarely
say much. He was reasonably slow to crawl (11 months) and walk (18 months) but
he was so bloody happy there was really no need for concern. He was an
overloved, perhaps overprotected and overcleaned first born! And it was a role
he thrived in. I remember an old lady once stopping me in a park and asking was
he a first born? She could tell and gave me a knowing smile – maybe she knew
more back then…I certainly couldn’t see anything wrong with him.
Somewhere along the way he started to walk on his toes. We
weren’t really alarmed, toe walking runs in the family and we assumed he would
eventually grow out of it. He also started to develop his obsessions. Wheelie
bins, aerials and wipers, washing machines that later turned into natural
disasters and more recently storm chasing and computer games.
On the 30th June 2007, three weeks before he
turned three our whole family was sick with colds including a three week old
Will. Elle came down to help look after us and I remember being so miserable
about having to miss my End Of Financial Year work dinner because we were all
so sick. I didn’t know how bad it was going to get – it still ranks as one of
the worst moments in my life. I couldn’t get Lachy’s temperature to come down
and after having tried everything I eventually gave him an icypole. I remember
explaining to Elle that sometimes kids had seizures when you couldn’t get their
temp down, I didn’t know Lachy would have one seconds later. I watched my
little boy throw his arms up and start fitting, then slowly come out of the fit
only to stretch his body out long like a surfboard. He was hard as a rock and
white as a ghost except for his perfect lips that had turned blue. Kris was on
the phone to the hospital as Elle and I raced into the car and headed there, I
could barely fit my three year old surfboard in the back of the car he was so
rigid and long. I remember Elle screaming at me to breathe in his mouth and
start CPR but I couldn’t get his lips apart and I thought I had already lost
him. When I ran into the hospital with him his body stopped stretching and
gradually his colour came back and he folded into me. I laid him on a stainless
steel bench and watched him gradually come around. I was crying with relief, I
couldn’t believe he was breathing again.
He soon went back to sleep and was given more Panadol to
bring the temp down and we got moved to a room for the night and eventually he
woke up. As soon as he woke he started screaming at everyone. Yelling out ‘no’
to us, the nurses, the doctor and anyone else that tried to talk to him.
Believe it or not at the time ‘no’ wasn’t really even in his vocabulary. My sweet little boy was going nuts at
everyone and all I could do was apologise and try and explain that he didn’t
usually act that way. For me, that day was the turning point for Lach. I just don’t think I ever fully got my boy
back. I took him to a GP after a few weeks as I was concerned but she explained
that the ‘fucking threes’ were much worse than the ‘terrible twos’ and we left
it at that. Having had two more kids hit the fucking threes I couldn’t agree
more with her analogy but I still maintain that that seizure changed him.
Anyway, we just kept plodding along at that point, Lachy
continued to amaze us with his speech and knowledge despite a few months of
speech therapy after he developed a stutter and shut down from communicating
all together. Will too, developed the 3 year old stutter and we did the same
therapy successfully with him. It will be interesting to see if Ems too, does
the same.
Then when Lachy was 4 we moved to Harvey. He started kindy and from all reports was a happy but quiet kid. We knew then he was not going to be a sports star, he had yet to ride a bike, or kick a footy, or swing himself on swings but he was happy and theatrical and seemed to love life. And that was all that mattered at 4.
Then when Lachy was 4 we moved to Harvey. He started kindy and from all reports was a happy but quiet kid. We knew then he was not going to be a sports star, he had yet to ride a bike, or kick a footy, or swing himself on swings but he was happy and theatrical and seemed to love life. And that was all that mattered at 4.
Pre Primary came in 2010 and with the wonderful support of
his teacher we started looking into his ‘differences’. He was unable to skip or
hop and often complained of leg aches and his general gait wasn’t quite right.
He still walks like Sid the Sloth from Ice Age but he gets upset when we call
him Sid so we’ve backed off on that one. So the appointments started in July
2010, at 6 years of age when I took him to a physiotherapist in Australind
about his legs. He told me how tight Lachy’s calves were and gave us a few
stretches to try but referred us on to a sports medicine specialist in Bunbury.
A few weeks later Lachy and I attended the sports med
appointment and he told me that 99% of toe walkers are habitual ones but in
Lachy’s case he felt it was neurological. He requested a spinal X-ray to rule
out any problems but referred us to a neurologist in Perth. Then he grabbed my
knee and asked me why I wasn’t crying given he’d just told me something was
probably wrong with my son’s brain. I guess it was the news I had been
expecting…so it wasn’t upsetting, plus Lachy was with me and I’m always telling
him ‘crying doesn’t help’ so I try and practice what I preach! He went on to
explain how tight Lachy’s leg muscles were and what stretches we needed to do
to improve his tone and flexibility. Before driving home I called Kris and then
we cried. Lachy just looked up at me blankly and smiled and the guilt started
to eat away at me from then. Our sons legs were in trouble and we thought he
was just a bit different, a bit unco and suffered from growing pains. We didn’t
have anything to compare him to, he was our first, our test kid! And aren’t all
kids different? Why focus on what he couldn’t do, we had tried to focus on what
he was good at.
Fast forward a few crazy months of consulting Dr Google and
it was time to see the neurologist. He eventually confirmed the suspicions and
after a clear spinal MRI, a clear brain MRI and a clear EEG Lachy was diagnosed
with mild spastic diplegia (probable cerebral palsy). We were pretty shocked, we were expecting to
find he was on the autism spectrum so the CP threw us off track a little. We
were put on a waiting list to access Botox through PMH (we are still on it!)
and referred to physio to start daily stretching. The first night home we hit
Dr Google again and there it was: Mild CP symptoms include toe walking, ‘teddy
bear’ hands and a different gait. How did we miss it???
Lachy had no idea what was going on and cried through most
of the tests (as did I). I wanted to make it all stop for him but at the same
time I was painfully aware of how lucky he was to be him, and how lucky we were
that this was all we had to worry about. That said the months that followed
were tough. He resisted his stretches and started becoming increasingly
negative about all the things he couldn’t do. As the one that took him to most
of his appointments, usually with the other two kids in tow, it wasn’t
pleasant. He started to really resent me and withdraw. I still remember towards
the end of 2010 falling in a heap with my best friend because I didn’t know how
to love him anymore. It was hard work staying positive when all I got from him
were negatives and crying and “ I hate you”. It felt so personal too, he still
seemed OK with everyone else and he would get a bit emotional at school but
still seemed to be hanging in there too.
In 2011 we stumbled through the year as best we could.
Academically he didn’t do too well but he had a wonderful teacher who was happy
to let him be. She suspected he had learning difficulties but insisted he was a
bright boy. Over and over it just seemed that he needed time. Time to
understand, time to attempt, time to retry, time to finish. There was just
never enough time for him. With Emme now 1 his life at home was much the same.
The once overindulged first child had two younger siblings to compete with for
time and it just didn’t suit him.
In desperation one day I called the social worker at the CP
centre – that phone call led us to a private orthopaedic surgeon who ended up
starting Lachy off with Botox. This treatment is still happening now. Every 4
months we head off to SJOG Subiaco and have to hold down our boy with the help
of several nurses and doctors as he is terrified of going under. He cries and
screams and eventually passes out and we stroll down the hallway, make a cup of
tea, and then stroll back down to recovery. It is a horrible day, one that I’ve
managed to let my father in law, and Kris take from me on two occasions. It’s
not a nice thing making someone else do the holding down, and I’ve definitely
toughened up over the years but some days I imagine him as my little perfect
newborn and just want to whip him off the table and run out of the hospital
with him and never go back.
At the end of 2011 I started to think he was actually ‘depressed’ and sought help from a counsellor. She told me to go home and take half an hour out of each day for myself and then took my $170. I was so fucking angry! What mother could you NOT give that advice too? And I didn’t have a way to get half an hour a day anyway.
At the end of 2011 I started to think he was actually ‘depressed’ and sought help from a counsellor. She told me to go home and take half an hour out of each day for myself and then took my $170. I was so fucking angry! What mother could you NOT give that advice too? And I didn’t have a way to get half an hour a day anyway.
In fairness I’ve always liked a drink or six but I wrote
myself off (a lot) trying the escape the realities of an unhappy house. In July
we decided that for Lachy’s sake he really needed one on one and we just weren’t
finding the time. He had started counselling and eventually we realised we
needed some ourselves. We were at the point where living apart was feeling like
a viable option. To keep Lachy happy one of us would have him, the other have
Will and Ems and we could swap each week. The problem was, we loved each other
and wanted our future together. Insert marriage counselling here!!
Our counselling sessions were probably the best investment
we made in our 15 years together to date. We covered so much in those sessions
that always led to better communication at home afterwards. We knew we wanted
things to work out, we just didn’t know how to get there without doing any more
damage.
Gradually as 2013 approached, our mindset changed. We felt
more in control, we made some decisions that felt like they would change our
life for the better. Then on the 8th December I wrote myself off one
last time and two days later dragged my bruised and battered body to a
paediatrician to find out the results of his latest psych testing. The paed basically
talked to my bruises…I’m still waiting on a call from DCP. Mother of the year
had hit her biggest low and it led to Toni begging me to stop drinking and find
an outlet – blogging it was!
As soon as the calendar flicked over to 2013 I breathed a
sigh of relief. 2012 was over, our marriage I thought was going to be OK, we
had made some decisions about Lachy and our family life that we felt would
help. I guess there is a lot to be said for positive thinking – so far 2013 has
been 1000 times better than 2012.
We have seen another paediatrician – it’s our last chance to
plead his case and request a diagnosis. Ultimately the outcome of the diagnosis
is meaningless to us. We know our son, we try and manage him the best we can,
make his life as smooth as we can, but if someone in the medical profession
would just back us and WRITE SOMETHING ON PAPER I think I would do a FUCKING
CARTWHEEL!! OR THREE!! I am trying not to get my hopes up. I go from one
professional to the next – just hanging on – keeping on going and counting down
weeks and days til appointments. I don’t have much left in me to give. I will
not seek another opinion after this.
I remember in one of my meetings with the CP association
they took Lachy off to do some physical assessments and left me talking to the
social worker. I cried through the whole appointment and remember apologising
to them for it. I should NOT be crying, my son is lucky, I am lucky, our family
is lucky. The social worker let me cry and then let me cry and then let me cry.
Eventually she explained that kids with ‘mild’ disabilities often find it
harder to find their place in the world because people don’t necessarily ‘see’
the disability. The last few years this has seemed so sooooooo true!
We have had some wonderful physios, OT’s and counsellors
along the way but all in all I’ve lost a little bit of faith in the system.
It’s just been one disappointment after another, and I really feel for other
parents in this ‘mild’ boat. I am exhausted with phone calls and appointments
but know I have to just keep swimming.
It wasn’t my intention for this to be a big whinge…seems
that’s all I’m good for some days. There is so much about Lachy that I haven’t
even touched on yet. His splints, his horse riding, his oddities and
obsessions, his love of minecraft and tornadoes and storms in general….and what
made me decide to finish this tonight? Not that I could ever fully be ‘finished’.
It’s simple really: Today was one of the hard days. The days when it is so
blaringly fucking obvious that Lachy is autistic that I want to scream for
help. I want a sign on my head, and his, I hover over the Facebook ‘what’s on your
mind’ and type subtle screams for help, only to delete them before I hit post!
Today at horse riding his usual team of 4 helpers turned
into 8! 8 people required to help one kid cope with turning around on a horse.
His fear, his anxiety and his sensory issues all compounding. Tears streaming,
arms flapping and fists locked in defensive mode. 8 people and Sunshine the horse
eventually worked together and ‘made’ him turn around while Will and I sat on
the edge and watched. Yes I cried – but I know it will help him…won’t it?
Mission accomplished – he did it… then it was on to the
dentist. The appointment started amazingly well until she wanted to squirt some
green stuff on his tooth. Ten minutes of coaxing and reassuring and practising
and sniff testing and we eventually got there.
I forgot to mention that I wanted to punch a man in the waiting room for
the dirty looks he was giving me when I kept asking Lachy to back off me. He was
in my face, in my space, asking the same questions over and over and I was
DONE! Sometimes I give myself slaps and dirty looks too but I knew what was
still to come for the day. I knew it was tough love time…I know my boy… I know
my life.
So yeah, today was tough, but most days are in some way or another
for any Mum. I am lucky to be me. I love my son. I hope one day he conquers his
anxiety and ‘quirkiness’ enough to live in the real world. I hope he has a
brighter, healthier and happier future than I could ever imagine. I hope he
loves someone as much as we love him.
Most of all – I hope I get glimpses of my boy back over the
coming years and I hope one day he hugs me tight and meaningfully and never wants to let me
go. And I hope I have the compassion left to hug him back with all my might. I
miss my boy.
I often sit in my hallway and stare at these photos of Lachy and I. It helps take away all
the tightness in my chest, all the stress and frustration and anger of the day...and most of all reminds me that he is my beautiful boy...and that my world is as it should be.
