Mathew was a beautiful baby, born full term, good
birthweight, no complications during pregnancy or labour. Breastfeeding was established easily (after
the usual encounter with snotty, pro-formula midwife) and he fed like a pro,
piling the weight on and moving up from the 75th centile to the 91st
and then staying there (he’s still there now at nearly 5). His early babyhood was uneventful, just
boobing, sleeping, smiling, more boobing.
By the time he was 6 months old we were laughing and calling him lazy as
he was making no attempt to roll, or to sit unaided, or to crawl, or to reach
out and grab food / spoons. By 9 months
we were still laughing and there was still no sign of any of it happening. By 11 months, we weren’t laughing quite so
much, but then he suddenly rolled, sat up, and shuffled around on his bottom
within a few days of each other and put us out of our misery. For a short time everyone settled back down
into a state of blissful ignorance.
However, at 15 months there was no sign of any standing up, let alone
walking, or attempting to feed himself plus, worryingly, I’d begun to realise
just how silent he was too. I remembered
a family holiday with my eldest child (now 20!!) at the exact same age. At 15 months, Joe had been pottering around
and talking almost in sentences, asking to go and say night night to the sheep
and reciting the first 7 or 8 letters of the alphabet. Mathew wasn’t even babbling. He didn’t make a sound, apart from laughing –
he was good at laughing! We voiced our concerns to the nursery nurse at his
(late) 12 month check. She said not to
worry just yet.
Mathew stood up at about 18 months, and walked at 20 months,
so still within the boundaries of “normal”.
There was still no babbling, though, let alone words, so in the April of
2011, just before his 2nd birthday, we took him to the GP, who
promised a referral to speech and language. At his 2 year check a few months
later we voiced concerns again and the nursery nurse said she would chase the
referral up. We finally got our first
appointment with a speech therapist when Mathew was 2 and a half. At that point he still wasn’t really making
any noises, and definitely didn’t have any words at all. The therapist gave us some strategies to use
and we spent the next 6 months following him around commenting on his every
move in very simple language. We got
progress, a few clear words (“Oh dear!” was the very first thing he said), and
the emergence of what, after a while, was obviously talking, but he did it with
his mouth completely closed so that it sounded like somebody talking with a gag
on. Speech and Language referred us to
Portage, a nice lady who came and played once a week and worked on trying to
coax sounds from him. She did an
assessment on him and he came out, at age 3, as being at the level of an 18
month old in most areas, and 12 months old for speech and communication. It was a bit of a shock, to be honest. We also got our first appointment with the
Paediatrician (the GP had referred us there as well as speech and language),
although she didn’t do much other than say he was physically well so that
wasn’t much use!
Meanwhile Preschool was fast approaching and Portage and the
SALT agreed to attend a meeting at the school with us to introduce Mathew and
his problems. I wrote a little booklet
to take with us all about him, what he liked and didn’t like etc. It was while I was doing that that I realised
how odd a lot of his behaviour was too.
I found myself writing things like “he lines things up a lot” “he gets
anxious in noisy or busy environments” “he rarely makes eye contact” “he won’t
let us touch him around his neck, or cut his hair” “he only eats Weetabix, dry
pasta or chocolate buttons” “he seems to crave hugs and pressure on the top of his
head and shoulders” “he puts everything in his mouth and jumps up and down
flapping his hands all the time” etc etc.
School were brilliant, a few weeks after he’d started we had another
meeting, and the SENCO initiated a CAF, which is a system for monitoring
progress of children with additional needs which can involve multiple
“agencies” if necessary. I told the
SENCO that I was thinking of doing a Makaton course so that I could help Mathew
to sign. They immediately signed his
teacher and the TA up to do the same course so that they could support him in
school with signing too. They also
referred him for a MAAT assessment. MAAT
stands for Multi Agency Autism Team. So
there it was, out in the open. His
teachers thought he had ASD.
In the spring of 2013, school had Mathew assessed by an
Educational Psychologist. The day after
we got a phone call, could we go in and meet the Ed Psych after school as she
wanted to speak to us. She was a nice
lady, obviously good with kids and skilled at her job. She told us, as gently as she could, that
she’d assessed Mathew as cognitively being at the level of a 2 year old (he was
almost 4) and that she recommended that the school put him forward for
Statutory Assessment (the process by which children are awarded a Statement of
Special Educational Needs). The aim was
to get him a placeat the local special school (co-located on the same site)
rather than going to mainstream. Hearing
that was like a body blow. There is a
world of difference between knowing deep down that there is something “wrong”
with your child and having somebody else telling you that whatever it is, it is
so bad that they will be unable to function in a mainstream environment with
“normal” kids. We went home and cried,
then picked ourselves up, dusted ourselves off and decided that whatever was
best for Mathew was ok by us.
The next few months passed in a rush of activity - appointments with speech therapy (much
progress, lots of clear words, signing going well), a behavioural therapist
(much progress, introduction of visual aids to support the signing and to help
Mathew understand what was happening), more assessments by Ed Psych and various
other people as they gathered the evidence to help the LEA decide whether or
not a statement should be awarded, and a visit to the special school to see
what we were getting ourselves into (it was lovely). Then suddenly we hit a brick wall. Statement awarded (good) school not named
(bad). Apparently the LEA wanted him in
mainstream (cheaper), but they had forwarded his details to the special school
as well and it was up to the schools to decide between themselves what was
best. Luckily, the special school
already knew Mathew well, being on the same site it had been easy for the
teachers to visit him and get to know him for themselves, and they were all of
the opinion that he needed the quieter environment and specialised teaching
methods that they could offer.
Mathew started at the special school in September 2013. He’s making good progress there. He’s had an Occupational Therapy appointment
and we’ve had some good advice from that, and his MAAT assessment finally
happened in February, we get the “result” next week.
So that’s the facts, but there’s a lot more to our story
than that. Living with a child like
Mathew is very different to bringing up a neurotypical child. It is a rollercoaster of emotions and a huge
drain on both physical and mental resources.
It’s a bit like setting out on a long journey and everybody else around
you has a car, plenty of petrol and a map, but you have none of these things
and people keep jumping out and setting up road blocks or putting up Diversion
signs to try and stop you from getting there.
We’ve learned that we have to shout loud sometimes to get the help we
need, if a service like speech and language or OT thinks that you’ve getting
along with things happily then they will leave you to it, so you need to pick
up the phone to chase that next appointment, or the attendance to the group you
were promised. Services for children
like these are so stretched that they simply don’t have the time to see your
child as regularly as they should.
Basically, they offer advice, but it’s YOU, the parent, who is the real
therapist, you can either follow their advice and help your child, or you can
do nothing and nobody really will care because they’re all too busy. I’ve spent hours reading up on various
issues, spent hundreds of pounds buying various bits of equipment which might
help or attending training courses, hours
designing and printing visual aids or planning activities carefully around
sensory issues etc.
Our days are governed by how “autistic” Mathew is being
today. Some days are fairly normal,
other days we just hide in the house and hope he won’t notice that the sofa is
2cm further to the left than it should be or that his dad has eaten a banana
(don’t ask…) Getting up in the morning, getting
dressed, going to school, coming home from school, having tea, getting
undressed, having a bath, going to bed – all these things are a series of long
winded rituals which have to be followed to the letter, deviate from the norm
and you will pay, possibly with your life.
Every conversation is a minefield where you could say the wrong thing
and trigger a full on melt down, and where you’re never quite sure whether
you’re actually talking about the same thing or not. Some days Mathew’s sensory issues are so bad
we literally can’t leave the house. On
days like that he stays in his pyjamas (his clothes “hurt” him), we spend hours
in complete silence because our talking makes him extremely anxious, I endure
hours of sitting on the sofa with him literally wrapped around me because he
needs hugging (pressure vest is next on my list of things to spend hundreds of
pounds on!) On days like this, every
toilet visit has to be supervised, because if you leave him in there for more
than a minute he will smear faeces all over the walls. Mealtimes can be a logistical nightmare
because he will only eat certain things.
Shopping can be fun because the “list of things Mathew will eat” can
suddenly change, leaving you with a mountain of Weetabix or multipacks of
Quavers visible from space with the naked eye.
Simple things that other families enjoy, like going out for
a meal, or to the cinema, or to a pantomime at Christmas are just totally off
the agenda (we tried an autism friendly pantomime in January and it was just
bloody awful, we were all just so stressed and traumatised by the time if
finished). Birthdays and Christmas
aren’t the magical times they are with normal kids. Mathew still doesn’t “get” that inside the
wrapping paper there might be a nice toy for him, and to be honest, the run up
to Christmas and trying to get him to understand and be even a tiny bit excited
just made me want to scream inside. When
your child has additional needs (I won’t say ASD yet because we don’t have the
formal diagnosis), the whole family is affected by it too. My older children don’t get the time and
attention they should do from their mother, we don’t have the money to spend on
them that we should have because my husband had to give his job up to be
Mathew’s carer, so there are no fun days out, and no holidays, and definitely
no designer clothes or new trainers.
They are usually very understanding on the surface, but deep down I
think they feel that I’ve let them down somehow, or that I love Mathew more
than them. And when Mathew is a grown up
with autism, because that’s what children with autism become, and I’m an old
lady or dead, they will be faced with the decision over whether to step in and
take Mathew into their own homes or let him rot in some care home somewhere.
Then there’s the guilt.
There’s always some new study coming out trying to get to the bottom of
why there are so many children being born with ASD these days. It’s hereditary (yeah, hubby is a bit weird
sometimes), it’s due to problems in pregnancy (oh great, my womb doesn’t work
properly), it’s down to parenting (really?
Why are my other kids “normal” then?), it’s a 1st world
problem brought on by too much sanitation (I knew my bloody toilet was too
clean!) etc etc… Seriously, though, I do
often think about my pregnancy, as we went through a very stressful time at one
point with one of the older boys, and wonder if it is my fault, or look at my
husband who is socially totally inept and wonder if he’s passed it on, or think
about myself and a lot of the sensory issues I have and wonder if maybe it
wasn’t him, it was me… There’s also the
guilt we feel leaving him in the school playground every morning because if you
think any of this sounds bad, you should see some of the kids that go to that
school. I worry sometimes that by
fighting to get him a place there we’ve limited his horizons, but then if he
was in mainstream I would worry that he was being overlooked by teachers and
bullied by his peers and struggling to cope.
You can beat yourself up forever over it, and it distracts you from the
important job which is to just bloody well get on and cope with it.
All this sounds very negative but it isn’t really as bad as
it sounds. There’s a common
misconception that people with autism are all like “Rain Man”. Maybe some of them are (not any of the ones
I’ve met so far though), but most of them look just like you or me on the surface
and they often behave just like you or me too.
They smile, they laugh, they will look you in the eye (although not
always and not for long). You can
interact with them, share a joke, play a game, have a cuddle. On a good day, having a child like Mathew is
better than having a normal child. He’s
a joy to watch when he’s utterly absorbed in playing with something, he’s witty
and clever and has us in stitches laughing.
He’s loving and kind, too. I
might have had to wait until he was 4 to hear my first “I love you”, but now I
get to hear it multiple times, every day.
When you have a child like Mathew you get joy from things that other
parents take for granted, you celebrate little things like the fact you went to
the shops, bought a pint of milk, and came back again without any kind of
hassle, you stand back in amazement when your child pedals his bike for the
first time, or manages to climb up the ladder to the slide without your
help. Having a child like Mathew can be
easier sometimes too. When he gets
totally absorbed in something he’ll sit and play for hours, meaning we can do
the housework, or make the tea, or read a book, or sit and knit without the
constant interruptions you’d normally get from a child his age.
Then there are the people we’ve met, the parents of kids
like Mathew who go to the same school, or the people involved in the local
charity for children with additional needs.
We’ve made some friendships with some very lovely people that we would
never have made if it wasn’t for Mathew.
And we’ve learnt some skills we would never have learnt. Our lives are richer for having him and
despite the stress and the fatigue our love for him and for each other is stronger
too.
