Well here we are again. It's February 2001
and Ryan is now 2years and 9 months old. We think he is doing
very well. He and Rebecca enjoyed Christmas, they are both
walking now and they ran from person to person helping to open presents.
I did try to take lots of photos but had problems with the camera.
Ryan has special boots which help him walk, they seem to
keep him more stable somehow. He still does not talk, makes
lots of noises, some of which we try to interpret as words.
Actually I'm sure he does say "up" it sounds kind of like "uma"
and I think he is trying to say "up me" - pick me up -.
He laughs a lot and is obviously very happy. It's so
frustrating though trying to understand what he wants, he is still not
very good with the sign language, Rebecca uses words and signs to
communicate and is leaving him further behind all the time.
She is able to 'translate' for him. I
wish we could help him more.
I made him some flash cards (loads of them) with
pictures of things he sees every day, he loves playing with them and
yesterday he picked up one with a picture of a toothbrush on it and
did the sign for cleaning teeth so maybe the cards are helping.
Every little improvement gives you heart to try something else as well.
We've just worked out that if Ryan does (or has done to him) all the
things he is supposed to each day he will have to give up his nap and not
go to bed until about 9pm. Guilt slipped in with Debbie for a
little while. The "I'm not doing my best for him" thing,
but she has realized that life means that you just have to do the
best you can at that time. If that means he can't have his physio,
his portage, his eye patches and everything else EVERY day then so be it,
he is a child has to have some ordinary playing time as well.
Some new photos at last.
Ryan and Rebecca both love trying to play the Guitar with
Grandpa. I was a bit shaken at this photo - it shows his forehead as
clearly being different to Rebecca's (and most other people)
will be three this month, his "little" sister is 19 months old
can you see the size difference? Neither can we.
Ryan will be able to talk one day, we are sure of
that. He does try now and "Up" is quite clear (well
to us anyway). Rebecca translates more and more for
him. She will listen to him then tell us "Ryans wants
*****" or "Ryan says
****" when you know what he has said suddenly
you realize that a lot of the sounds were nearly right. In October he should be attending a special
nursery a couple of afternoons a week and hopefully that will help him.
They say that animals behave differently with disabled
English Mastiff Robbie loves children anyway but Ryan certainly has special
treatment. Robbie is only a pup but he is different with Ryan,
My mother does worry about him, or rather she worries
about the way people will treat him. Someone said to me the
other day that she has a new neighbour with a three year little boy and
she suddenly realized looking at that child she saw how behind in development Ryan
was. He is just "Ryan" and no one actually notices
anything wrong with him. We are very lucky to live in a small
friendly community where people are accepted as they are.
I know it's taken a long time to update
this page but here we are at last with some new photos.
Here are two taken at his 3rd birthday party in April Sorry it took
a long time to finish the film!.
The couple of other 3 year olds there
seemed considerably older and bigger than Ryan but they all enjoyed the
party . Ryan and Rebecca love it when mummy makes bubbles!
Summer in Cornwall means a big influx of
visitors and on a recent day trip I saw lots of children with their
parents. I found myself looking at the 3 year olds running
around playing and shouting and I was thinking "why can't Ryan do
those things". I got a little bit depressed then I looked
at him - a big grin on his face and covered in ice-cream - and I realized
if he was like those other children then he would not be our Ryan
and I'd miss that oddly enough. So in a daft kind of way I'm
happy that he is special. Look at the "Special
Mother" page and you'll see what I mean.
I know that sometimes people think we are
hard on him because we don't "wrap him in cotton wool".
We don't run and panic every time he falls down, we walk over to him and
smile and say "come on, up you get, why are you down there".
We want as normal a life as possible for him and he won't
have that if we panic and worry all the time. Anyway, Big
things - the first family holiday. Not far away but still a holiday.
was not sure of this little car at first, but later decided that he liked
Rebecca sleeps in a bed but Ryan is still
in a cot. He liked to play in Rebecca's bed though.
They did like this model elephant
Rebecca's 2nd birthday was a great day for both the children.
Debbie bought a bouncy castle - not a huge one of course but big enough
for them. They do enjoy it. When the film is
developed I'll put a couple of photos up of the two of them on the castle.
It's such a safe thing for them to play on (and fall on).
I do not have a clue what his auntie Beth is doing with a cuddly toy in
her mouth but Ryan obviously thinks it's very funny.
Ryan is talking. Well OK maybe "talking" is not
quite the right thing to say but he is definitely trying to talk.
The sounds he makes for ONE TWO THREE sound nothing like the
real words, but he uses the same three noises every time .
He also now says "it ow" for "sit down"
and he points at a seat, so he knows what he is saying.
He wants to talk and that is half of the battle.
Sitting on the sofa with their father
Why the two of them should want to sit on a coffee table
and play with mummy's kitchen utensils I do not know.
See, the patches he wears some of the time do
not seem to have made much difference to his eyes.
Well, October is getting closer and we have still not had
confirmation that Ryan will be able to go to the special nursery unit.
There is still time though and we keep our fingers crossed.
I'll let you all know how it goes.
Here are a couple of pictures of the bouncy castle
Yes Ryan has started going to the unit. Monday
and Tuesday afternoons. Both children go to a child minder now
on Mondays and Tuesdays, they started doing that last month.
It gets them used to being with a small group of other children and having
someone other than mummy or granny look after them. Of
course it also gives Debbie the chance of some much needed time for
herself. While Ryan is at the unit Rebecca is with
the child minder so she gets some time without Ryan too. Becca
can be difficult at times, because she sees Ryan "getting away with
things" like not using his fork and spoon properly and she is not old
enough to understand that he is just not as capable as she is.
Hopefully as she gets older we will be able to explain more (and of course
we hope that Ryan will do more). Ryans time at the unit seems
to be happy but he will not speak to them at all. They tell us
that this is normal and it could take a while for him to get used to all
the things he does there, then he will relax enough to try to talk to
Christmas looms. Becca is talking almost
without pause and wonderfully Ryan is trying to copy her a bit. He
also tries to keep up with her running around (fat chance).
Apart from the obvious physical differences Rebecca has an awareness of
self ("my turn now" and "mine" or "Becca
want one") which Ryan just does not have. It seems that
this is important to development but it's something you can't really give
a child, they have to develop it for themselves. We're all
looking for toys for Christmas which will help him to use the skills he
has and find other skills. It's easier actually to find stuff
for Rebecca and we have to be careful that she does not end up with lots more
than him. Also clothes, Rebecca is the same size as other
children of her age so there are lots of clothes for her. Ryan
is in the 18-24 month size range but we don't want baby clothes for him,
we want stuff suitable for a roughy toughy 3 year old little boy. It's
there alright but not cheap!
Potty Training - it's working. Mind you the
fact that Rebecca likes to wear PO pants (not what you think! Po is one of
the Tellytubbies and Rebecca has pants with Tellytubbies on them) does
help. He watched with great interest when his sister used the
potty and he saw the fuss that was made of her. We think that
helped him want to use the potty too. So he has bright
coloured pants which he loves to wear and he uses the potty.
Not all of the time of course, there are lots of accidents but like it
says in "The
Special Mother" every little step is important and wonderful.
Christmas was of course hectic. The kids were
the centre of everything (as they should be) they both thoroughly enjoyed
opening presents and helped everyone open everything.
course they got tired and ate too many sweets, well you can't watch them
all the time and family and friends who do not see them very often don't
want to be told "no more sweets for the children please".
Only one argument when a well meaning friend looked at
Ryan and said "poor little thing". She was soon put
right! He is not a poor little thing. For a start
he is not a "thing".
Also, he is happy and unaware that there is anything wrong
with him. As he grows up he will learn that he is not
the same as everyone else but we intend that he will be secure in his
family and in himself and will never feel that he is a "poor
thing". That's not "pie in the sky" talk, ask
most disabled people and their families, they will tell you same.
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