Friday 23 January 2015

Full Time School

It's Friday and Lucy has completed a week of full time school for the first time since November 2013. Actually it's probably longer because she was having regular hospital appointments, so the last time she had a full uninterrupted week of full time school was July 2013.

It hasn't been an easy week, but it could have been worse. She woke up every morning not wanting to go. We would have lots of tears and begging. It didn't help that she had developed a cold this week too. She wasn't  poorly enough to warrant a sick day but she still wasn't feeling well. It was hard but I had to be tough.

Monday wasn't too bad. She asked that Daddy would be there to take her to school as well. After her initial worries and tears she calmed down and went in bravely. She came home all smiles. We had a few more tears at bedtime but over all it wasn't a bad day.

Tuesday was not so good. There were many more tears and a complete refusal to get dressed. She went into complete meltdown and we had to give her half an hour to calm down. We don't really have half an hour to spare and we were late for school.

Wednesday we tried without Daddy. We had a meltdown as soon as she got up, mostly uncontrollable sobbing. Once she calmed down she was fine and even dressed herself and helped me make her lunch. Today we were early for school.

Thursday was the best day of the week. She was a little upset when I went to wake her but soon calmed down and we had a peaceful morning.

Friday was also going well but when I couldn't find her sister's shoes Lucy jumped on the computer while I was looking for them. I told her there was not time and we had to go to school right now and she went into meltdown resulting in us being later than we'd been all week.

Her teacher said she is doing well at school, she has had a few hiccups but nothing too bad. It's nice to see her smiling when we pick her up.

She is really enjoying her lunch. She didn't want school dinners so I am making up a lunch box for her. She chose the box herself and we made a list of the things she would like in it. We are keeping it really healthy and changing the food every day. She loves seeing what's in her lunchbox each day.

I have really missed her, I have really got used to having her at home so much. I've found this week really hard, I hate to see her upset and unable to control her emotions. I just hope that things get easier.


“Our

Sunday 18 January 2015

Autism in the Family

I'd like to take you on a little journey back in time, twenty seven years to be precise because that's when my first born son arrived in this world. There is nothing so precious as your first born child, even if they do cry all the time and have no clue that night time is for sleeping.

 I took him into a local shop when he was around six months old and the shopkeeper started asking me lots of questions about him. It was then I realised that he was not like other babies. She actually said that six month old babies were cute and smiled a lot, that they liked to play with you and started to sleep better. Nope, not my son, he still liked to cry all day and all night, unless I was walking him around in his pram.

When he was seventeen months old his sister was born and boy was I in for a surprise. This baby slept, I didn't have to hold her all the time I could lie her down in her moses basket and leave her to gurgle. When she was full from her feed she'd drift off to sleep with no problem and not wake up for hours. Perhaps something was wrong with her?

As they grew it became obvious that they had two very different personalities. It was because one was a boy and one a girl, wasn't it? My son was so naughty, all the time, and he never listened.

We had problems at school. he would sit under the table, refuse to go back into school after break time, not listen to the teacher or parrot what she was saying, refuse to write, refuse to read, refuse to eat his lunch, refuse to use the toilet. He was a very naughty boy!

His teacher gave me the number of a child psychologist. How dare she assume something was wrong with my son just because he was naughty. I just had to try harder, make sure he was disciplined more, I know I was soft on him, but his dad was really tough.  I hated it when he played up and his dad was around.

His dad left us when he was nine. It was ok, we could manage.

The school asked me to take him to the GP as they thought he might have ADHD. Pah, they thought every kid had ADHD. My son could sit in front of his N64 for hours on end, he had perfect attention when it was needed.

I took him to the GP who asked lots of questions while my son climbed on the back of my chair like he was climbing Everest and pulled my hair like it was a rope. The GP decided that I wasn't coping very well with my husband leaving and prescribed for me anti-depressants. All the way home my son chanted "you are the crazy one, not me!"

He started secondary school, it didn't go well. His best friend no longer wanted to be his best friend and he didn't want to speak to anyone else, even the teachers. They put him in the Special Needs class which made him worse.

When he was twelve we went to see the psychologist. She asked a millions questions while my son sat eating his trainer.

He was diagnosed with Aspergers Syndrome.

Things got worse at school, not better. Inclusion was heard of then, but their ideas where ridiculous. My son was clever, but because he now had a diagnosis he was put in a class where he was learning the same stuff that six year olds would learn. He objected. I objected. I took him out of school.

He went to a school for kids that didn't fit into any other school. He was supposed to have been there for six months while they integrated him into a regular school. He was there for three and a half years. Then he went to a fantastic special collage which really didn't stretch him academically but gave him the opportunity to try so many new things like glass blowing, basket weaving, engraving and astronomy. It was somewhere for him to be while I tried to figure out what we were going to do next.

He decided himself and went and did an accountancy degree. I'm not sure that he will ever work in accountancy but at least he proved something to himself if no-one else.

And that is the story of my first born son.
I could go into more detail, but as he is an adult now I will respect his privacy. The main reason I wanted to share his story is because of where I am now with Lucy. She is about to go back to school full time. Next year she will going to secondary school. I have the difficult decision to make of what school she will go to. I know that things have probably changed since my son started secondary school fifteen years ago, but have they changed enough? It's something on my mind a lot at the moment and I'm sure I'll be writing a lot more about it while I figure it all out.

Monday 12 January 2015

One of Those Days

I took Lucy to the GP last week and after initially blaming constipation, he actually listened to me. So he gave Lucy a letter for an x-ray at the hospital. So finally we are going to see if there is anything noticeably wrong internally.

Today the plan was to fetch Lucy from school, give her something to eat and take her to the hospital.

The day started badly, Lucy had a meltdown before school. She did go, I really thought we would be late but we just about made it as they were closing the door.
She was happier when I picked her up but not keen on going to the hospital. I bribed her with a hot dog, but she kept on going on about getting a new DS game.

We got to the hospital to find a queue of cars going into the car park. We drove around for about 20 minutes looking for a space to park, the whole time Lucy was complaining, she felt car sick, she didn't want to go to the hospital, she was not going to get out of the car if we parked outside because it was raining. We had to park outside.

We made it into the hospital but she didn't want to go into the waiting room because it was full. We spoke to someone who told us they couldn't x-ray her at this hospital we'd have to go back to the hospital she usually goes to.

Lucy was happy now. She didn't want to go to the new hospital anyway.

We got back in the car and getting out of the car park was just as much of a nightmare as getting in.

Both our moods declined rapidly and I decided to put off visiting the hospital until tomorrow.

Lucy asked for a new DS game.

stuck in a car park on a horrible wet day :(



Wednesday 7 January 2015

Happy New Year!

Lucy went back to school today.
The morning started like any other morning, then when it was time to get dressed I think she thought about feigning some kind of illness, but changed her mind and just confessed that she felt really nervous. I gave her an encouraging chat and she was ok again. No problems going into school, and one very happy little girl when I picked her up at lunch time. I think she's going to be just fine.

We seem to be having an issue with her feet though. She keeps getting blisters, which don't get any better. She had one just before Christmas and I had to take her to the Doctor for some anti-biotics because it became really infected. Then she had one on her toe that bled so much it turned the entire foot of her white sock red, within minutes. They take forever to heal, and often once healed just break up again. I've brought her some expensive shoes which have been properly fitted, so hopefully that will help. Although today, after just one day in her new shoes, she has another new blister.



Another problem is one we don't really talk about much but I think it's time to try and get it sorted again.
When Lucy was a baby she suffered terribly with constipation. This was an ongoing problem throughout her early years and we tried medicating her on the GPs advice. Nothing really worked though so I decided to make sure her diet was healthy and keep giving her plenty of fluids and hope for the best. 
When she was four we were having trouble toilet training her. She had already started nursery and been suspended until she could use the toilet on her own. We finally managed it with her wee, but the poops were another deal altogether.
At six she was assessed for autism and this involved lots of tests and analysing. The psychologist thought that it was probably our parenting skills which were lacking and gave us potty training tips to try with her. The GP gave her more medication for constipation.
At nine we are convinced that this is not a normal problem. She is still incontinent. In fact, she has never actually made it to the toilet.
It's not just constipation, although she does still get constipated at times.
It's not our parenting skills. I have five children, two younger than Lucy, and I've not had a problem like this with any other child.
It could be psychological, it could be physiological.
We don't know, but we do need to know. Lucy is getting older and we cannot risk her soiling herself at school, they would never let her live it down.
We have managed at school so far because when she was much younger it was understandable that a child might have the occasional accident. When she was seven, she managed a whole year of full time school with only one accident. The teacher sent her home believing she was poorly.
When she was eight, she was only at school for a short time, and was attending hospital twice a week, so she managed without an accident.
She is nine now and due to go back to full time school. I cannot see  her getting by without soiling herself.

When she does soil herself she doesn't seem to have any idea how it has happened. She swears that she did not feel it. She gets very upset. We get very upset. I get very fed up of cleaning her up, it's much worse than changing a baby's nappy.

So on Friday I am going to speak to the GP again. I want to know if there is something physically wrong with her and if so, if it can be fixed. If it is psychological then I will ask for help. I'm so hoping that something can be done for her.


Too Much and not Enough

 As you may recall I told you that Lucy has a syringomyelia and I've been getting advice from a neurologist who is not Lucy's doctor...