Being thankful

This morning at school we held a cake sale for Children in Need. The children are all wearing spotty clothes and they will do some fun activities to raise money to help children who really need it.

I am so thankful that I have 2 healthy children. Yes, they  have both had their problems but we are almost at the end of them now. Next week Robyn has an outpatients appointment with her surgeon and Katie also sees her paediatrician but that should be the end of a long journey with them both.
I am thankful that we have had the help and support of friends, family and professionals to get us through the hard times… and let’s be honest, there have been some very hard times with Katie inparticular.

This morning at school I bumped into a very special lady, Heather. I claimed Heather as my unsung hero of 2009 in this blog post because she did so much for Katie and us as a family. I have to confess that I didn’t recognise Heather straight away but she recognised me. It brought a tear to both our eyes as we spoke about Katie. To be able to update her on her progress was marvellous. It helped me to remember just how far we have come in the last few years.
It is possible I will see Heather in school more often now as she has a new role working with older children with statements. I am still so thankful to her. The fact that she remembers us so well proves I was right to claim her as my unsung hero.

 

Learning about Autism

I came across this picture from here this evening. I saved it to my laptop and then opened it in paint so that I could circle the characteristics that Katie shows.
I ended up circling all but one of them! Very very interesting. Since recognising Katies needs we are coping with her so much better. We are all happier. She has more choice and is more able to express what she wants and needs.
We still have a long way to go but even just recognising this is a wonderful step.

Katies Paediatrician Appointment

Quick update on Katie…

We got to the child development unit and immediately bumped into the Portage manager who has been so lovely. She was really pleased to see Katie and told her colleague who we were… she was lovely too. She said she had typed up all of Katies notes the other day and commented on how lovely it was to actually meet her.

The peadiatrician was very friendly and put us at ease straight away. He explained that she had been referred to him because he often assesses children who dont seem to tick the right boxes for a clear diagnosis.
He asked us LOADS of questions about how Anthony and I were as children and then about how Katie was as a newborn. He was very interested in the fact that she was always a very unhappy baby and how the best thing to stop her crying was to just put her down. Cuddles never had a calming effect on her, quite the opposite.

We spoke about her little rituals and how it is now part of all our lives to just get on with it and go along with things. We can never just have a kiss from her for example… the order has to go “Kiss, cuddle and nose”. If we do not say the right things at bedtime (Night night princess, don’t turn the light on, I love you, See you in the morning) then she will cry and be very unhappy until we go back and say it.
Some of the things he asked us we found ourselves really agreeing with. “Does she spin round alot?” was one. She spins round and round until she falls over and then does it again and again. “Can she cope with loud noises?”. No, she often puts her hands over her ears and shudders. Playgroup have noticed this too.

He also asked if there is anything she does that suprises us for being advanced for her age. Katie knows all her colours apart from silver and gold. She knows numbers and also some letters. She can remember a, c, e, i, m, o, r, and w. She doesnt use them in context or anything but she knows the letter and remembers it so well.
She can draw a person with eyes, ears, nose, mouth, hair, arms, legs, fingers and toes. She is beginning to write her name too.
I know Robyn could do none of this at this age.

He ended the appointment by saying yes, it does look as though there are some autistic tendancies there and it warrants being investigated further. She will need to have some blood tests done to check all sorts of things including her thyroid levels etc. They will also look at her DNA and make sure everything appears normal.
The blood tests will need to be at the hospital, we have to wait for an appointment for that.

All in all it was a very good appointment. Lovely to have another professional tell us that we are not imagining things. We still have alot of people look at us very suprised when we tell them she has all this support. Alot of people do not realise that Katie is any different from any other child… they just think she is naughty which is incredibly frustrating for me.

She was a really good girl at the appointment and then proceeded to have a mega strop in Asda on the way home lol.

Affirmation

Today someone said to me “Wow! How much weight have you lost?!”. I hadn’t seen this person for a good few weeks and she said I looked fab.
For me to be able to reply “I’ve lost a stone!” was wonderful, really great!

We also had a meeting today all about Katie. We discussed what will happen for her development and needs from now on. It was decided officially that she has some special learning needs and has been placed on the SEN register. While talking about her it came across from all 4 professionals that we were meeting with that Anthony and I do a great job as parents.
How fantastic to be recognised by different professionals that in with all the difficulties we have with Katie we are infact doing a good job. We are good parents.

Affirmation is a wonderful thing. Good things happen to good people. Have I mentioned that before?! 😉

Best of 2009: New Person

For me the best new person of 2009 was Heather.

Heather is (or was) Katies speech therapist. When the health visitor upset me back in February the only great thing that she did was to advise us to go to the drop in clinic that is run by a speech therapist. We went along because although the HV upset me because of how she spoke to me I did know that Katies speech was a bit delayed… just not as delayed as the HV tried to tell me.

That is when we met Heather. Immediately she listened to me and understood how the HV had made me feel. I knew she was on my side in it all. She agreed that Katie needed help and we started to attend “Tiny Tweeters” sessions that were run by Heather. She made it fun, she spoke to me in a supportive way and was never patronising. Katie grew to know and love her and I was able to feel comfortable going to the sessions because Katies little ways didnt bother Heather.

In September Heather called me and said she was thrilled at how Katies speech was coming on. She said she didnt think we needed to carry on going to the therapy sessions. She would still visit Katie in playgroup and she wasnt discharging her completely but Katie had really outgrown the Tweeters sessions. This was the day when she raised some concerns about Katies attention and listening skills. I went to see her the following week and I sat chatting to her while we filled in the relevant forms. I cried, she listened and understood. Heather is the one who put in the referral for portage services. All of the help and support that we get for Katie now would not have been in place if it wasn’t for Heather.

Heather called me on Wednesday to tell me that she was passing Katie onto another speech therapist who deals more with preschool children than toddlers. The new therapist, Becky apparently works in Katies playgroup already and knows the staff there. I almost cried when I put the phone down. I’m sure Becky will be lovely but I’ll always have a special place in  my heart for Heather. She is definitely my unsung hero of 2009.

This post is part of  Gwen Bell’s Best of 2009 blog challenge

Katie is 3!

On Tuesday my baby girl turned 3. We had a really wonderful day! We gave her a Baby Annabell doll which has been a huge hit. Nanny & Grandad have got her a pram for her to go in for Christmas!

She was at playgroup in the morning and we sent in a birthday cake for her to share with her friends. She ran in with her chest puffed out so she could show off her new badges! After playgroup we had a lovely afternoon indoors playing with her new things. Bubble Buster from my mum and dad was another present which was a big success, aswell as the Bilibo from my Grandma. We are thinking of getting one for Robyn too as they both adore it!

After we collected Robs from school we took them for a suprise visit to Santa. Robyn was totally awestruck! Her accent changed straight away from the slightly more Midland accent she uses at home to the totally Northern accent that she saves for when she is with her friends! She asked Santa for swimming goggles. Every year she manages to ask for something she has hardly mentioned at home. I have been assured now that Santa will be able to bring goggles on Christmas morning lol… thanks Tesco! She also asked for “Purple stuff”. She has told me this lots of times luckily. Santa will be wrapping all her stocking presents in purple paper, hopefully this will suffice! Katie did not say a word to Santa but she did smile and seemed to enjoy the experience (even though the photograph suggests otherwise lol).

We rounded the day off with a visit to McDonalds and another birthday cake. An absolutely perfect birthday for a 3 year old!

Best of 2009: Challenge

The biggest challenge of 2009 in general has been Katie.

As I mentioned before, she is more than a handful. She is like a whirlwind. We call her “Springer” as we were once talking about where we could meet up with a friend and we specified it really needed to be somewhere that Katie could have a good run. Our friend said “You talk about her like she is a Springer Spaniel!”, we replied “But she is!”.

Her behaviour has been well documented in my blog. She has the ability to make me cry from sheer frustration and exhaustion. She is like the little girl who had a little curl right in the middle of her forehead… you know the one. When she is good she is very very good but when she is bad she is horrid!

Now though we are getting the help and support that she needs. In April sometime she will go to the Child Development Unit and have a full assessment done. In January we have an appointment with a paediatrician who looks into genetics and a whole load of stuff in children who have extra needs but it is unclear what they are and what the reasoning behind them are.

Our portage worker, Janice is wonderful. She is so affirming and supportive. Hopefully with all the help we will get 2010 will be a year where we figure out how best to help our little princess.

Best of 2009: Moment of Peace

I have spent alot of 2009 wishing Katie would just be a good girl! When she has a temper tantrum it is off the scale. She totally knows how to press the right buttons which are guaranteed to make me lose my patience.

In September though Katie started at playgroup. I remember that first afternoon that she was gone so clearly. I walked home alone which was strange enough! No little person pulling to let go of my hand, no buggy to push. I could walk at my own pace and take in my surroundings. When I got home I remember putting the kettle on and making a brew. Then I did exactly what I wanted to do for 2 whole hours. Wonderful.

Of course when it got to 3.15pm I was desperate to get Katie back and see how she had got on at playgroup. She loved it! Now she goes 1 full day, 2 afternoons and 1 morning. She gets so much from it and so do I.

This post is part of  Gwen Bell’s Best of 2009 blog challenge

Best of 2009: Book

I confess to not reading enough this year. I think a new years resolution will be to read more. I’m quite ashamed that I am struggling to think of a book that is worthy to go under this post!

I have decided to choose a book (well, a poem really) that made me cry with joy just 3 days ago. It made me cry because it is a childrens book that I was reading to Katie. Regular readers of my blog will know how demanding she is, how exhausted she leaves me and how frustrated she makes me feel.

A version of The night before Christmas… this is the book we chose to read together before bedtime at the weekend. She listened so intently. She pointed at the pictures, copied the words as I was reading and sat as still can be!

This is the part of the poem that made me cry, or rather Katies actions in response to it

And laying his finger aside of his nose,
And giving a nod, up the chimney he rose;
He sprang to his sleigh, to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, ere he drove out of sight,

“Happy Christmas to all, and to all a good-night.”

I showed Katie how to put her finger aside of her nose and give a nod. She copied it superbly. She tried to give a whistle too. Then she said “Nun-night!”, shut the book and said “Gom sleep now!”. To some people this might not sound much to write about. For me it is a moment I have waited a long time for. My daughter being a lovely little girl, responding to me in a positive way and being an absolute darling.

This post is part of  Gwen Bell’s Best of 2009 blog challenge

Think Positive

Today has been pretty horrible. Anthony’s job is under threat. For regular readers of my blog you will know he was out of work for over 18mths until September. To say this is bad news is an understatement.

A wise friend of mine told me this: “Try to concentrate on what you want rather than what you don’t want!”.

On the same thinking this evening we have talked about the plus sides of being out of work.

• Anthony will be here to help me with Katie when she is being difficult
• We will be able to go out for some nice walks
• We might not have much money at Christmas but have the chance of being together as a family
• I will be able to go to church again on a Sunday as the time as a family won’t be so precious

If Anthony does keep his job he will probably look for alternative employment anyway. It will buy him some time so he wont be out of work. We have thought about offering to take the lease of the premises but that is something that needs very careful consideration. For it to work he would have to start from scratch with new staff.

Today I am thankful for:

• My family who have been so so supportive today. My sister has offered some ad hoc work for Anthony
• My friends who have tried to take my mind off things and offered hugs
• Katie who has been a little star today. When I cried she said “Mummy doin’ cryin’. Love you mummy”
• Robyn who has made me proud by learning all her lines for the school play
• Anthony who is my rock. Together we will face anything that is thrown at us

“…All shall be well and all shall be well and all manner of things shall be well”: Julian of Norwich