The month of April is best known for
the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for
children and a magnificent feast to celebrate the resurrection of Christ. To
many people April is Easter, they plan, they organise, many months in advance
sometimes, Children have the time of their lives, gorging on chocolate,
receiving gifts from extended family members, but to me, April is Autism
Awareness month.
So to celebrate this, I am going to
dedicate my blog for a whole month to families who wish to share their Autism
Journey with you.
Some of these people have autism themselves, some are
autistic parents to autistic children. We have teachers with autistic students
and even Bloggers who want share their journey with me, which I am very
grateful for.
Hello,
I’m the mum to an almost 4 year old boy who I affectionately refer to as
The Monster, and a baby boy who is almost 2 months old. I’m a long time partner
(but not wife as he refuses to put a ring on it) to my other half.
I often get asked how we knew The Monster was different. What triggers was
there that made us question his ‘normality’? Well in short we didn’t realise he
was different since we had no comparison. Was he hard work? hell yes. Was he
challenging? of course. Was he hitting all his milestones? Some but not all.
All sounds pretty normal to me. Nobody had ever told me having kids was easy so
I assumed this was ‘normal’. The fact I’d managed to eat toast and have a
shower which I’d been reliably informed was impossible when you had a small
person meant we were winning, surely!?
It was his child minder who raised the flag.
She described him as having tunnel vision and very busy. His speech
wasn’t coming, he was super noisy but no words and he was mildly delayed at
walking, taking his first steps at 17 months. When she told me in no uncertain
terms that he was, quote “hard work” and "the most hard work out of the
20+ kids we care for" it was music to my ears. I thought all kids were this
challenging! And so with that we mentioned it to our GP and the ball started
rolling….and rolling….and rolling. Here began what was to become a just over two-year
diagnosis process.
In the months that we waited for his first appointment with his paediatrician
I raised the flags with The Monster’s health visitors. His two year check was
fast approaching and I was now more aware than ever of the things he wasn’t
doing. He used to wave but had stopped, he used to say hiya but had stopped. He
didn’t have enough concentration to hold a crayon never mind draw a line and he
was constantly busy. Sleeping was cheating and being up for several hours in
the middle of the night wasn’t an uncommon occurance. Everyone assumed it was
normal waking and nothing some sleep training wouldn’t resolve.
I finally broke.
Ringing the health visitors uncontrollably sobbing down the phone after
a particularly long stint of about 4 hours broken sleep a night. They sent
someone around that day. But they still didn’t get it. The boy did not sleep!
This was to continue until the actual day of diagnosis when I was finally
granted the magic potion, melatonin. Hello sleep…oh wait, hello newborn
baby!
At the first paediatrician appointment I was asked a whole host of
questions whilst The Monster ran rings around me. He turned on every switch he
could find, played with the taps, banged the window and avoided all toys in the
room, obvs. At least he was on form and she could see what he was like. We got
referred for a hearing test, a speech and language appointment and for an
epilepsy test since he was having frequent episodes of staring into
space.
We waited so long for these appointments to come
through that I arranged the hearing test and contacted a speech and language
therapist myself.
Eventually he had his epilepsy test and it came back normal. After over
18 weeks we still hadn’t heard anything for the other follow-ups so I contacted
the paediatrician to find out what the blooming heck was going on, only to be
told his records had been archived rather than sent to the relevant
departments. Furious. Lucky I had been so pro-active or he could’ve been lost
in the system forever. By this point I already had a speech and language report
and he was undergoing more hearing tests which at least meant we didn’t have to
start afresh. I can’t recall too much from the next appointment with the
paediatrician other than to confirm that he needed further assessment.
In the months that followed we confirmed he had no major hearing
problems that would affect speech. He had an NHS speech and language
appointment and he was observed at home before being refered to the
multidisciplinary team for observations which would ultimately lead to a
diagnosis.
I did my homework. I read and read and read about autism, I completed
countless quizzes online and I watched The Monster a lot. I did all this in
secret.
I was plagued by guilt for looking so much. What if he
wasn’t autistic, what if he was ‘normal’ after all?
Communication was becoming increasingly difficult. He was growing
physically but mentally and emotionally he was now much behind his peers. He
still didn’t talk, he only just started waving and he couldn’t nod to indicate
if he wanted something or even if he liked something. We started signing and
amazingly he picked up a few. Progress at last. His behaviour was at times
uncontrollable and I began dreading going to new places. On one occasion before
diagnosis I apologised about his behaviour and said he was autistic. That was
the first time I used the ‘A’ word to anyone outside my circle of friends and
family. He wasn’t even diagnosed. He had tried to nick someones mobility
scooter so I had to say something! I had a lump in my throat the size of a
grapefruit and I cried all the way home.
Time went by and I had it all but confirmed that he was autistic. I was
relieved when the assessments came around. Another step closer to it becoming
formal. But what if they didn’t see what I saw, what if in the hour a week that
they observed him he was on good form, what if he wasn’t behaving autistic
enough!?
The assessments came and went and finally D Day
(diagnosis day) loomed.
My partner and I were handed a 13 page dossier before entering the room.
It was tough reading but also made me laugh out loud. They had seen what we
see. They had him down to a tee. We entered the room and were granted the sofa
whilst the paediatrician and 2 other professionals sat opposite us. Not
daunting at all! We went through their report fully before finally being told
“He has Autism Spectrum Disorder”. I think they expected us to crack
there and then, constantly asking if we were OK. My feelings? Relief. Sadness.
Happiness. Grief. Real.
It’s been four months now since The Monster was
diagnosed.
I still grieve for the child I thought we would have. It gets me some
days that I may never hear my boy talk, I may never see him ride a bike, have a
partner, get a job, learn to drive, leave home. I’ve learnt it’s okay to be sad
sometimes and I don’t feel guilty for shedding a tear about it. It doesn’t mean
I love The Monster any less. If anything I love him more. He has taught me to
always be kind, to be compassionate, not to judge, to be patient and to be a
better person. All this and he isn’t even four.
That’s pretty epic.
I no longer feel guilt for accessing support and I can talk freely about
his autism without feeling like I am betraying him.
My name is Lisa and my son is autistic.
I Also have my very own blog page A Life Less Ordinary With Autism
You can also follow me on FB - A Life Less Ordinary With Autism
You can also follow me on FB - A Life Less Ordinary With Autism
Wow, thanks for sharing your insights on such a wonderful issue. It brought back a wave of memories to my mind, when my kid was diagnosed with Autism, and we were struggling to find a good school for him. Finally, we found hope in Rebecca School in NYC. I feel education can uplift this issue to a lot and we all can do our best to never let go of hope.
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