I've added another page to this site, USEFUL LINKS
it's just a list of the web sites for organizations which we have found very useful.
Ryan started the year by dragging himself up on
furniture then standing on his own for a few moments.
By February he could stand quite well but was very
reluctant to take that first step. When that happened in April
(around his second birthday) he seemed surprised. Now he was a
toddler! Actually, he didn't walk so much as lurch around and
was very quick to drop down and crawl. He was getting around though
and seeing as by then we knew that he could not hear very much and were
not sure how well he could see, we had to take extra precautions.
More gates across everywhere, the house became even more like an assault
is fascinated by the washing machine. He can feel the vibrations. Luckily it has a child proof safety lock. He is
never alone anyway.
Ryan's second birthday was brighter than his first.
He took more interest in ripping paper off of presents. He even ate some
of his birthday cake. His sister Rebecca enjoyed it too.
don't have to click on this picture to make it the right size.
See, his hair is starting to grow now and he looks like
any other baby.
The thing is he's not a baby. He is two and
a half years old. It's pointless trying to potty train him,
but we still do. How do you even start to potty train a child
when you can't explain to him what you are doing or what you want him to
do. We are convinced that it will all come in time.
Ryan is on the "Portage" scheme now.
Every week a qualified support nurse comes and teaches us all a bit more
'Makaton' sign language and plays with Ryan using a selection of
educational toys especially chosen for him. She leaves these
toys for a week to see how he gets on with them then takes away those toys
that he cannot use or does not like. It's a kind of one to one
teaching experience for all of us and it has made a big difference.
The main thing is there is always a positive side to the games and toys.
The "thumbs up" sign is the one most used.
We found that Ryan had no interest in the signs for
quite a while then suddenly he seemed to want to copy them. He
does not seem to connect words or signs with anything specific very
easily. You'd think a child would learn the sign or word for
"biscuit" quickly but Ryan, although he loves biscuits, took
ages to associate the sign with the object. Then just this
week he toddled into his Uncle David's room with a biscuit in his hand.
David said "what have you got Ryan" and Ryan answered with the
biscuit sign. He had lots of cuddles and "thumbs up"
signs for that. Hopefully he will learn to talk one day.
There seems to be nothing physically that prevents him apart
from the hearing problem.
He has had grommets put in his ears, that seems to have
made a bit of a difference for him and we are told he will be fitted with
a hearing aid soon so who knows.
In the meantime it does not stop him enjoying music.
It just means he has to rest his ear against the guitar.
He obviously loves this because he grabs his Grandpa's hand, takes him to
the guitar and tries to drag the guitar out.
No, he can't ride the little tricycle but he does love
to sit on it and be pushed around the lounge.
is Ryan with his "little" sister Rebecca. Yes, she is as big
as he is and will be one year old next month.
Well it's official, Rebecca is bigger
than Ryan. We've thought so for a while but the baby clinic
have confirmed it now. It's odd, we've always thought of Ryan
as "normal" (whatever normal is!!) but seeing Rebecca
grow and learn things makes us realize how small and slow Ryan is.
She is doing things that other 12 month old babies do, Ryan still can not
do some of those things.
He has hearing aids now, one for each
ear. He does not like having them in, we don't know if it's
because he does not like noise or because he does not understand what they
do (they are set on very low volume so maybe he can't hear much through
them yet) of course it could simply be that he is just not used to them.
Each day he has his hearing aids in for a short time while we try to amuse
him with things that make noises.
Today he looks like a battered child.
His walking (or lurching) has seemed to end up in him being stopped by
some solid object he has just walked into. He was playing with
a walking trolley and just simply fell on it - bruised arm. He
had a cuddle then walked into the arm of a chair - bruised forehead.
Banged himself with a plastic toy - bruised knee. He has days
like that, then so do all toddlers.
September 24th. I think
we've had a breakthrough! Ryan is using the signs by himself.
He went to his mum with his empty cup, signed "all gone"
then waved the cup at her and signed "drink". She
got him a drink and he did the "thumbs up sign". I
just can't say how great that was. He has also started to move
us around to where he wants us to be by pushing and pulling at legs and
arms. He is starting
Ryan is to have glasses. I don't
understand how on earth they managed to work out what glasses he needs
because they can't really test his eyes - he can't tell them what he sees.
This Makaton sign language is great. Rebecca is using it too,
(actually she is picking it up faster than Ryan) it does not stop her
trying to talk, it just means she can communicate better using a mixture
of sounds and signs. Hopefully Ryan will copy her.
As soon as he has his glasses I'll take a picture and put it up.
Ryan has his glasses.
Of course he can't wear glasses and hearing aids. Not that it
matters much, he takes the glasses off as soon as they are put on him.
The Ophthalmologist said in a very authoritative way "he will soon
tire of taking them off and then he can keep them on all the time".
Obviously she has never had children! He has not tired of
taking the glasses off and shows no sign of getting fed up of that
A little word about forms.
Disability forms are designed for adults not for children. For
"Does the person need a wheelchair?" - No he's in a push chair.
Of course there is only a "Yes/No" box type answer option.
"Does he need help getting dressed?" - Yes he's only two and a
And really stupid things like "How much time each day is taken
looking after him?" Someone else had a form asking if their
four year old could drive a specially adapted car!
Yes, I know there have been no new
photos for a while but Ryan has Impetigo (not a clue if that's how
you spell it) and he is certainly not looking photogenic right now.
He has antibiotics and creams and things and we hope it will clear up soon
then we can take some more pictures.
He is trying to feed himself.
All children have difficulty getting a spoon into their mouths with the
food still on it, Ryan of course, has more problems than most.
Well, I remembered that when my children were tiny I bought them baby
spoons that were sort of bent slightly. So I went from shop to
shop looking for the same type of thing and got blank looks - you know the
kind! Then I had a brainwave (stupid really, I should have thought
of it ages ago) I looked on the internet. I found
pictures of the very spoons on the Gerber web site, but trying to contact
them to find out where to buy some is impossible unless you live in
the United States. I emailed Heinz. The people
there are fantastic. Yes they could get me some spoons,
gave me a phone number to ring to order them, which I did.
They looked at this site and they just sent Ryan some spoons, a couple of
bent ones and some straight ones. They also sent a beaker for
Rebecca (so that she didn't feel left out - there's thoughtfulness for
you). I didn't expect that from a large organization
like Heinz but the people there were so friendly and helpful.
You would not believe the difference they have made. That
awkward little kind of wrist twist movement a child has to make to get the
spoon (with food) into their mouths is just not necessary with the curved
spoons. He thinks it's great - he loves to try to be
independent - and with a bit of help he is managing to feed himself.
Rebecca at 14 months can feed herself with even less help if she uses one
of these spoons. Now the down side. The spoons are
not available in the UK yet. I don't know why. I
have to assume it's something to do with British Standards or something.
But THANK YOU HEINZ you really cannot know how much you helped. UPDATE
- bent (or curved) spoons are now available EVERYWHERE.
Well here you are.
A new photo of Ryan.
He's not wearing his glasses here I know, but it's a cute photo so I put
One minute he was stood
there looking at me (wearing his glasses) the next
minute he was on the floor!
Ryan seems to lack confidence. Outside of the house he will
walk a step or two then becomes very 'clingy' and seems nervous of walking
any further. Rebecca on the other hand is quite willing to go
just as fast as her little legs will carry her, to the extent of her
We have another word for Ryan now from his Physiotherapist - he's
monoplegic. Seems that just means he has problems with one of
his legs. Oddly enough not the leg scarred from all the tubes and
lines he had in when he was a baby. No, that leg is the
good one. We had not actually noticed it properly.
We knew he did not walk in quite the same way other toddlers did but it
was "just Ryan". As soon as it was pointed out that
he kind of "throws" that leg instead of walking normally (we
keep hearing that word - what does NORMAL mean anyway) we could all see it
Sorry about this one but I'm not a photographer.
In my defense I will explain that as soon as Ryan sees a camera pointed at
him he tries to get as close to it as possible as quickly as possible.
This means you can easily end up with a (very) close up shot of his nose.
I was still trying to take a photo of him wearing his glasses and the
flash made his face look very pale. He is not wearing
lipstick, he had just had some blackcurrant drink.
Another word to learn - Aphasic - basically language or
speech difficulties. We are learning a lot of new terms
to describe one very small boy. When you think of it all it's
daft, he is Hydrocephalic, monoplegic (caused by mild Cerebral Palsy),
Aphasic and has hearing, sight and learning problems (attention span of a
backward goldfish) but we still think of him as normal. There's
that word again.
We do have to be careful, when Rebecca does
something new or says a word and knows what she means - like putting her
arms up to you and saying "up" we praise her and pick her up but
when Ryan does something -anything- that shows there is something working
in his brain we get really excited. For example He likes to
sit on my lap and have me recite the rhyme Teddy Bear Teddy Bear.
I hold his teddy and make it walk (or bounce) up my leg while I say
"Teddy Bear, Teddy Bear climb the stairs" then I put the teddy's
hands! together while I say "Teddy Bear, Teddy Bear say your
prayers" with "Teddy Bear, Teddy Bear turn out the
light" I move one of teddy's arms to pretend switching out a light
then I cuddle teddy while I say "Teddy Bear, Teddy Bear say
goodnight". Well, just last night he brought the teddy to
me and as I picked him and the teddy up I was fed up with saying this same
rhyme over and over, night after night so I was trying to think of some
way of interesting him in something else while I said the rhyme just once
more. I bounced teddy up my leg (climb the stairs) and as I
started to say "Teddy Bear, Teddy Bear say your prayers" Ryan
reached out and put teddy's hands together, I carried on with the rhyme
and he tried to do the "turn out the light" bit then he cuddled
teddy when I said "Teddy Bear, Teddy Bear say goodnight".
We put the teddy down for a few minutes while we looked at a book then
when Haydn (my husband, Ryan's Grandpa) came into the room I tried the
rhyme again and the same thing happened. I know you'll think
I'm soft but I had tears in my eyes and so did his mum when she came home
from work and I told her about it. You see even a small
breakthrough seems a big event to us. There is
something there. All families with children like Ryan must
feel like this, we all share in these small triumphs.
This one is well worth a look full size.
Ryan and Rebecca with their mum.
Return to top of page