3 months I decided I had to join a Mum and baby group just to get out
of the house-really not
my scene at all but I went. To my surprise there were other women there
whose babies didn't sleep, cried all the time etc - I wasn't going mad
group was a godsend but it was here that I started to notice that Chris
wasn't advancing at the same pace as all the others; I put it down to
paranoia. At 6 months that group finished and 3 of us joined a Mum and
toddler group at the local church. It was here that 2 years of nightmare
of the old biddies running the group came over to me on my second visit
and said, "Oh I didn't realize your son had Downs Syndrome, but
of course he is still welcome here." I can still remember the exact
words today. My heart stopped but I smiled at her and said, "He
doesn't" and carried on. At the end of the session I was pushing
the pram back home with another woman I burst into tears and told her
what had been said. She (a neighbour whose boy was born exactly one
month before Chris - who I'd never met before Mum and baby group) said
how cruel to make such a comment and that she was sure there was nothing
wrong with Chris. I couldn't stop worrying so I went to see my GP. She
pooh poohed the old biddy and said she couldn't find anything untoward
and that she would know if there was cause for concern. I went away
comforted but now I was always looking to see if Chris was doing everything
that the other babies were doing.
couple of months later we went for a progress check, and he failed most
of it, but they said it's not unusual and everyone's different that
boys are notoriously lazy and that he would catch up and they'd keep
an eye on him and recheck in a months time. We went back he'd caught
up on some things but was still lagging in most. They said they'd recheck
in a months time. I went to see my GP- reminded her of that old biddy
and pointed out Chris was missing his milestones. She said she'd refer
me to a paediatrician just to put my mind at rest but she was sure nothing
was amiss. We waited for the appointment, and eventually it came. She
said that it was clear Chris was missing milestones but that I shouldn't
be too neurotic about it as "they all catch up in the end".
We had a follow up appointment 6 months later with a different doctor-
she said the same thing. We had another follow up 6 months after that.
This time we saw the consultant. By now Chris was almost 2 years old
and had fallen a long way behind his peers- no words only just walking,
no self feeding - the list was longer than the things he could do. She
agreed that further investigation was necessary and arranged tests.
results arrived and the consultant 'phoned to say she needed to discuss
them with us as she'd never seen a result like it. I didn't realize
that if the doctor offers to come to your house its bad news- how naïve!
She came explained the result. I felt vindicated but still shocked.
Where do we go from here?
Chris is now 9 and a big healthy boy. We've had no health problems along
the way so we've been lucky. However there have been battles with education
and getting the right therapists but I've learned to persevere to get
him the best help possible. He has recently been tested for autism as
he has behavioural problems and it has been acknowledged that he fits
into the spectrum. I'd been saying for about 5 years that his problems
were more than just the Downs- (his blood test shows 10% trisonomy 21)
and finally again I have been vindicated. Now I never take no for an
answer and pursue any concerns until I get a satisfactory answer. I
never accept that the experts know best - I know my son - I know him
best and that's what I will get for him.
Pat married to John - 2 sons Christopher mosaic downs and autism,