Just watched a video today by
accident of my Son Zachary saying "Daddy" to me on my iPhone.
When you watch videos like this it should fill your heart with all
the love in the world.
Instead I feel angry and jealous of what other parents
take for granted.........
My Name is Kevin Killen.
I am an IT Engineer from Staffordshire.
I live with my beautiful wife Alicia and my 3 children. Summer is my
step-daughter and is 6 years old. My two sons are Zachary, who is 2 years old
and Archie who is 1 year old. We live in Burntwood,
which is about 30 minutes from Birmingham, UK.
Our son Zachary is Autistic. He started regressing at about 15
months and stopped speaking and waving by 18 months. Zachary was an early
starter from birth. He smiled and laughed from a very early age and gave
beautiful eye contact. He understood simple words and phrases. He learnt to
walk like any other child.
Now I know what people say that the MMR Jab is not related to Autism but I
can't help thinking that before the Jab he was an alert and chatty child with
full eye contact. After the MMR jab, my child changed. He no longer
wanted to try to feed himself. He stopped looking in your eyes and worst of all
refused to say mummy or daddy. At first we though he was “under
the weather”, checking his temperature regularly and excusing
his different behaviour as “a phase ". You know when your child
is acting different and Zachary was.
It took a few months before one day, whilst
sitting on the sofa, we broke down in tears.
We as parents hadn't discussed Zachary together until
this moment. Alicia's half brother and sister are severely autistic and Alicia had noticed similar
traits in Zachary. I myself had been on the internet looking at the symptoms Zachary was showing and
had come to the horrifying conclusion that Zachary could be on the autism spectrum. I think we both hoped he would
start talking and all this would go away.
That night was the hardest night of all. We sat
up talking and crying over what quality of life Zachary would have. Will he
have a girlfriend when he is older? Will he go to University? Will I ever
take him to football training? Will he ever say Daddy or Mummy again? You
torment yourself and blame yourself for not spending every hour helping him
learn to speak. Reality hits you. Your son will always be different.
Then came the time to tell family members and
friends your worst thoughts and feelings about Zachary.
As most normal people do the same things. They
ask you questions like “Are you sure this isn't just a phase?" or “he’s
only two years old, he might be a late starter". The best one was “my son
was 3 when he said his first words so you've got nothing to worry about".
I used to reply did you child stop talking after his or her first words??
I noticed a lot of stigma attached to autism which I had
never noticed before.
I have always myself been against Ignorance.
I started introducing people who had
children and saying “this is Zachary, he's currently being assessed by the
doctors for autism" before anyone would start trying to talk to him and
thinking he was stupid or ignorant. This often would make my paranoia of people
worse because I would be examining their facial expressions
for disapproval when they probably genuinely had no issues with it.
One day I was sat at the barbers waiting for Zachary to
have his hair cut. Sometimes he would stand quietly and play with the toys in
the corner. Not today!
Zachary had started "stimming"
Stimming is a repetitive body movement, such as hand flapping, which
is hypothesised to stimulate one or more senses.
A couple to the left of me had noticed Zachary and were discussing
it to themselves. They had a child with them who was happily playing with a toy
car. Zachary had moved over to the area where the other child was playing and
picked up a toy car and started mouthing the toy.
With a look of disgust, they picked up their child and moved him away
from Zachary.
My heart Sank, they were worried, like if Zachary touched their child he would suddenly catch
whatever Zachary had. I saw the confusion in their eyes and the total fear for their own child which
was not needed. I became so ireful that I nearly left the shop but Zachary
needed his hair cut so I stayed.
Have you ever been so angry that you
feel like smashing someone’s face in without striking a conversation? I did
then but I didn’t do anything. I froze.
I realised that I needed to be stronger for Zachary. No one is
going to make him feel different
but I needed to be calmer.
When I told my mum, I broke down in tears because I had kept in so
much and told no one. I said that day that Zachary needed help and I was going
to do everything in my power to get him that help.
We bypassed the Health Visitor
because she would have stalled the process in getting Zachary support he
needed. I went straight to the GP who was a paediatric specialist and voiced my
concerns.
Several appointments and tireless nagging,
we finally got the start we needed; Zachary was to attend a Gateway Nursery
with specialists there once a week for 2 hours.
I know some parents that had no
support till their child was 4 so we got a good head start
My mum was very supportive. She has always been there for me
and Alicia.
As for the other
family members some been very helpful, some have been distant or too busy to
help, whilst others have ignored us and as a result we now ignore them. When
your own family can't be bothered you don't need them. One member (no names obviously)
said that Zachary “isn't autistic, he's nothing like the twins” (referring to
Alicia's Half brother and Sister). That obviously angered us because we weren’t
asking for her medical opinion; we just wanted to let them know what was
happening. We ignored phone calls and had a message given to us after the birth
of our third child Archie, wanting to visit our home.
Not to visit us as
a family but to see just Archie as he was the new addition. We refused.
During this time I
suffered with a hidden depression and I have turned to painkillers (codeine)
in order to suppress my anxiety. I decided to take up boxing as a
form of release, a way of releasing anger and aggression. My health has
improved and when I'm training I feel so in control of my emotions.
When I finish training, the mental release is amazing. But like all good things,
they come to an end, I slowly return back to being a bitter and depressed
person and I turn to painkillers again. It still happens to this day.
I've never told
anyone but my Wife about this but I think these things need to come out to show
just how bad your mind can get if you let it.
Someone has once
said to me “You need to thank God for your beautiful children”
I don't thank God,
I thank my wife. She has been amazing throughout this and I know she
deals with a lot more anguish than I do because she has Zachary all
day.
He is such a happy
boy, he has a great sense of humour and given his size compared to other children,
he is so gentle. His Comunication is so much better now, although non-verbal it is very easy to understand for simple things like drinks,food and playtime.
Zachary now has 3
places a week in a special nursery and hopefully with their help we can make a
huge difference to Zachary's Life.
This is the Start
of my Blog, I hope it helps describes how a parent of
a child with autism feels and sometimes this message can't be spoken, its
must be put in words.
Thanks for taking the Time to read
Kevin Killen x
