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 course!

He 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.

August 2000

You 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.

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.

This is Ryan with his "little" sister.   Yes, she is as big as he is and will be one year old next month.

SEPTEMBER

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 to communicate.

OCTOBER

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.

Late October

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 particular 'game'.   

A little word about forms.   Disability forms are designed for adults not for children.   For example -
"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 half.
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!

November

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.

December

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 it up.

    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 reigns. 

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 plainly.

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.

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