Realisations

Being the parent of a special needs child is a complicated job. Not only do you have to deal with the numerous 'professionals' interested in your child, you have to meet a whole bunch of needs you never imagined, and for a lot longer than you could ever have believed. Tabitha is now a couple of months away from being 6, and it's bringing home to me just how delayed and severe her needs really are. She is still doubly incontinent. She is non-verbal. Her communication skills are restricted to a few signs, that she will only use when she is prompted to, not spontaneously. She has little or no understanding of other people's needs. In effect, we are living with a petulant toddler, who is 6 years old, and is showing no sign of developing rapidly to try and catch up with her peers.

It is hard not to look ahead and panic about what the future may hold for us. It is looking very unlikely that Tabitha will ever be independant and as much as being a parent is always a full time post, it's hard to know that in our case, it will be full time, for the rest of our lives with no break. We all love our children, but to know they will never leave you because they can't, and that no matter how things go for you in the future, there will always be a fully dependant child to worry about is one hell of a responsibility.

Birthdays!

Today was my nephew's birthday. He is now 3, and getting to be a grown up little boy. I made him a card and some tags to go on his presents. Here they are.

We spent the day at my Mum's house with the birthday boy, and little Rosie, my niece and had a lovely time. Ellie loved playing with Alfie and Chantelle (my mum's little girl), and Tabitha roamed around doing what she does. It was very good to be out of the house though, as the girls need a lot less entertaining when they are somewhere different.

Then, when I got home I found this.

A fabulous new Stampin' Up! set that I bought second hand on eBay. Called Terrific Tags, and will go brilliantly with my punches. Can't wait for a chance to use them!

I found something to share

Every parent of a disabled child knows the essay "Welcome to Holland". It gives a basic insight into how life changes when your child is disabled. As much as I agree with it, today I found this that Dana Nieder has written, "Amsterdam International". It is about how you enter Holland, and the difficulties you encounter before you even get to Holland. And it's very true.

Please take the time to drop in and read it. If you don't live with a child with a disability, it may give you an insight into how those of us who do, really feel.

Ooops!

I haven't updated in over a week! Well, not really that much has happened to us if I'm honest, things just bobbing along as they do. I have been crafting, but what I have been making are my Christmas cards, and I'm not blogging the design until they have all been completed and sent at the beginning of December. This year, I WILL be organised! The design is now finalised, and I'm really happy with it, now the production line starts. I have already cut my cardstock, so the fun can start as soon as I have spare time :-)

Life's a hoot!

One of the things I have got my sticky mits on, is a really, really cute owl punch from Stampin' Up!

I used it today to make a bookmark for Ellie, who, I am relieved to say, has rediscovered the joy of reading. Interestingly, this week, she has been bouncing out of bed in the morning, and demanding to go to school early, because she LOVES school. I am so pleased to hear this, this is exactly how things were before last year, which was horrible for all of us due to her teacher. I have now spoken to her about how sometimes these things happen, and you get teachers you don't get on with, but that you then get teachers who you love, and that makes up for it. Anyway, here is the bookmark I made for her, to celebrate her new love of reading.

I used Close to Cocoa, Cameo Coral, Chocolate Chip, and Almost Amethyst, with Basic grey Taffeta ribbon, and the Itty Bitty Stamp set. And most importantly, the owl punch. What do you think?

Oooh, look what I got.

I got some new toys today. I am very pleased with them all, and can't wait to have some time to be able to properly use them and see what I can come up with. All lovely stuff, and not even inked yet. I wonder what I can do with them. I must say a very big thank you to my wonderful friend Karen, who enabled me to get these things.

In other news, I took Tabitha to ENT out-patients today. She was a pickle, she totally refused to play the 'now, lets try and check your hearing' game, and she made it clear she didn't want any one looking down her ears. We got sorted in the end though thank goodness. Trouble is, her grommets are blocked and she's going to have to have more put in. This will be the 4th set, and her 21st operation. Speaking of operations, we are still waiting to hear if the PCT will fund her surgery to correct her protruding ears (I refuse to use the term they use to describe them), which could be number 22 if they agree.

Poor Tabitha. She certainly has more than her share of surgery.

Another birthday and a suicidal cat!

I had a bit of time last night and so made a card I needed to get done for the weekend. Here it is.

It was made in Pale Plum and Lavender Lace, using the Happy Everything stamp set. I made a flower using the Scalloped Circle punch, and added a clear button in the centre, that Karen gave me for my birthday. As she had been to visit today, she also brought with her the Cute By The Inch Hostess stamps set for me to play with, and I discovered the square buttons fit this stamp perfectly. The additional accents were from Simply Said, the set I seem to come back to most often.

We have 3 cats, all of whom are getting on a bit. I'm getting a little worried about Willow, our black cat. I think he is feeling his age, and maybe feeling suicidal after I found him today, behind my car. I took this picture before I moved him on.

Really not the safest place for a cat to sleep!!!

More illness

Poor Tabitha has been suffering again with her vomiting over the last few days. For a while yesterday, she was being sick every 10 minutes, which is pretty intense.Today, she has been improving thank goodness. Yesterday, I spent a very very long time on the phone to Karen, who was fantastic. Just being in contact with the outside world during these times can be vital for my sanity, and she offered to pop over today and keep me company as well.

I was pleasantly surprised by Tabitha's reaction to Karen, who she hasn't met before. She was so comfortable in her company that she ended up sitting on Karen's lap, having a cuddle watching tv. I took this picture of them together.

Isn't it cute? Karen's son is autistic and will not tolerate closeness and cuddles at all, which is something so hard to comprehend. Anyway, that made Tabitha's cuddles even more special, and I was so pleased to see her happy and trusting of someone new. She used to hate new people because of her early experiences of hospitals, but I think she is a lot more aware now that not everyone out there wants to stick needles in her. Little by little, she's learning more about people, and she's getting more confidence, which is so lovely to witness.

Evening Out.

Last night, I went over to my friend Karen's house for her official Stampin' Up! launch party. She signed up as a demonstrator in September, and has been beavering away making samples up ever since in anticipation of her launch party, which she timed to coincide with the new catalogue launch.

In return for a small fee, Karen provided drinks and nibbles, and we did 2 make and takes, which I will photograph and add to this blog tomorrow. It was lovely to go out, meet some new people and one or two familar faces, and have fun making lovely things in a great relaxed environment. Some of the ideas Karen has are so fantastic and creative, I can't help but be envious of her talent. I am already planning Christmas tree decorations that she showed us last night, well, I don't have the punch yet that she used, so I will have to alter it to another one that I DO have instead.

Please visit her blog to see more of her work, the samples on display last night really were exceptional, and this lady has worked so hard, she deserves to do well in her venture. And I'm certain that she will.