"A journey begins with the first
step......"
Our journey began the day our son was born he had
a traumatic start to his little life and was delivered by
caesarean section and under a heat lamp for the first few hours
of his life. The surgeon had managed to cut his forehead whilst
delivering him as there was little fluid around him. Not the
best start to life was it!!! I knew right from the first few
weeks after he was born that there was something "different"
about my precious boy. He was not like his older brother he
hated being picked up and disliked being cuddled .... yes right
from being a few weeks old!! He was a screamer and boy could he
scream!!! Of course picking him up made it worse he hated
feeling skin on skin and I very quickly learnt this and so
always made sure that he had a soft blanket wrapped around him
so our skin didn't touch and at this point I was beginning to
wonder what I was doing wrong with him and doubting my parenting
skills as my Health Visitor was saying that it was normal to
have two babies that were so different (My eldest was a quiet
baby and loved being cuddled). At first I was horrified as my
gut instinct was screaming at me that something was NOT right
and the Health Visitor was wrong. BOY DO I WISH I'D LISTENED TO
MY INNER VOICE A LITTLE HARDER!!!
Things went from bad to worse .... When it was time to start
weaning him he would refuse point-blank most foods and still to
this day is a very picky eater!!! He sat up late but "with-in
normal range". He babbled late but "within normal range" He
walked late but "within normal range". I was beginning to REALLY
doubt there was anything wrong as I kept getting that "within
normal range" phrase shot at me every time I tried to raise my
concerns. Eventually at his 3 and a half year check the Health
Visitor could no longer use the dreaded phrase "within normal
range" as he was only saying "Mama" and "Dada"!!!! he could not
draw representationally (i.e. a smiley face) and did not respond
to the hearing test (he'd passed the baby one!!) Suddenly the
Health Visitor realised that maybe my concerns were real and she
referred him for a hearing test at the hospital and to the
speech therapist too!! At last something was being done to help
my son!!!
He started Speech and Language Therapy and the therapist was a
lovely lady who spent an awful lot of time with us listening to
our concerns and what problems we had with our son and she very
quickly told us to go back to our Health Visitor or GP and get a
referral to a paediatrician as she thought there maybe was some
other problems but was not specific. We just thought she meant a
behaviour problem as that is what we thought our son had ....
how wrong we were!! The hearing test was done and he passed that
no problems although had to be encouraged to participate and
then he saw the junior paediatrician the next week. The
time-scale for all of this was 2 months and it seemed like an
eternity. The junior paediatrician was rather abrupt with us she
read everything I had written down all our concerns and worries
and then asked a few more questions and then blurted out very
bluntly that our child had autism and was somewhere on the
Autistic Spectrum ..... was that what we had expected to hear?
Well I burst into tears there and then I had no idea that it
could be autism and thought it was a behavioural problem, autism
had never crossed my mind ... she then told us we could find
more information about it on the internet!! We were to be
referred to the senior paediatrician for confirmation of the
diagnosis and to the Specialist Health Visitor for practical
advice. We left the hospital and I was an emotional wreck .... I
was grieving as I knew this was a life-long condition and there
were no cures for autism. I went through every emotion first
grief was a little overwhelming for a day or two, then I became
really angry that my little boy had not received any help before
now and he was nearly 4 yrs old!! Why hadn't the Health Visitor
listened to me?? Then when the anger subsided I became almost
obsessed with trying to find out everything I could about
autism: How it would affect him; practical strategies to help
both us and him cope in this topsy-turvy world; in fact I read
anything and everything I could!! This was my coping strategy
and I felt like I was actually doing something. We continued to
take him for speech therapy and were given information and a lot
of advice on how to deal with him .... our Speech and Language
Therapist was our saviour without her we would have drowned!!
I became concerned that we had not received an appointment for
the Senior Paediatrician and had not seen the Specialist Health
Visitor as promised and 2 months had passed so I contacted our
GP who rang the junior paediatrician and then the Specialist
Health Visitor and she came out to us and she in fact arranged
the appointment we had been promised 2 months before we were
furious as the junior paediatrician had sat on her hands and
done nothing!!!!! The Specialist Health Visitor was full of
practical advice and helped us deal with our feelings as well as
helping us understand our son more. We had been told by the
Speech Therapist that she had put in for him to be seen by the
Educational Psychologist with a view to statementing due to his
Speech and Language needs and we were encouraged to put him into
a nursery to see how he coped. I was very hesitant about this as
his behaviour could be so "odd" and unpredictable, however, I
found a nursery that was recommended for Autistic Spectrum
Disorder children and was soon being told that he was not
interacting well with the other kids and came home not wanting
to go again ... but we persevered then the Speech Therapist said
it would be helpful if they could do a book on his behaviour at
nursery and that is when the miracle happened!!!! Suddenly our
child had transformed from a monster to an angel!!! Verbally I
was told of the difficulties he had understanding and
socializing on paper he was fine!!! One of his nursery
attendants was lovely: kind, understanding and sympathetic to
his needs. The other was the total opposite and this caused him
much stress, he was not allowed to be himself and was not
allowed to be a dinosaur (his way of coping with stress). This
made it even harder to send him as he would have major tantrums
before we got there in case this person was going to be there
and if she was he wouldn't let go of me .... which for him is a
REALLY big thing as I've said earlier he didn't like being
cuddled or touched!! When the nice attendant left all hell broke
loose!! I actually walked in and found him crying stood in the
middle of the room on a cube they use to sit on and he actually
looked scared which was the first time I'd seen ANY emotion on
his face I told him to come to me and he looked over at the
nasty attendant and I told him again to come to me and tell me
what was wrong. I had to go and lift him off the cube and was
told he'd got worked up because he'd knocked something over!!! I
knew this was not his normal response and just glared at her and
left. It took me 3 days to extract what had happened and he said
she had grabbed him and made him stand on the cube he didn't
know why!!! I was furious and didn't let him go back!!!
The Paediatrician's appointment was nearly a year after we
started Speech Therapy and confirmed the Junior Paediatrician's
diagnosis he had an Autistic Spectrum Disorder and associated
Language problems. It still came like a punch in the stomach
even though I knew from everything I had researched that it was
true I'd still been vainly clinging to the hope that the junior
paediatrician was wrong and it was a behaviour problem after all
..... silly but true!! I wasn't as overwhelmed this time though
we'd had 8 months to come to terms with the probable diagnosis
and were better informed about what this meant for our son. Even
though we knew more I was still sad about it though. The
Educational Psychologist came to see us 2 weeks after the
confirmed diagnosis and made me feel absolutely nuts!!!! She
wrote a report that basically said my son was "normal" and used
the dreaded phrase "within normal range" AARRRGGHHH!!!! So the
Statement both ourselves and the Speech Therapist wanted for him
was not going to happen this was another punch in the guts. We
are now fighting for everything we can get for him as the
mainstream school he is at has managed to not provide anything
for him and he had to have a new Speech Therapist when he
started school who to be perfectly honest wasn't a patch on the
previous one she has recently dismissed him from her care and we
are appealing to "the powers that be" to have this re-instated
as quickly as possible as his old Speech Therapist had prepared
us for years of therapy and not 3 sessions and he's cured!!!
The fight is ongoing!!!!!
©2003 & Beyond
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