Always and forever

The girl had a major meltdown last night.

She had not had a good day at all.

It started in the morning when she was dropped at school. She was a little earlier to school than normal because the boy had basketball training before school so it made sense to take them both at the same time. It turned out that she sat outside her classroom until the bell went, even though she had asked to play a game with the other girls in her class who were there early as well. She would have made player number 9 and apparently the game only needed 8 players. These girls didn’t want someone to be ‘out’ at all times, so it was decided that it was easier if she just didn’t play at all.

She wasn’t even allowed to watch the game!

She then told us that a boy from her class walked by her and grabbed her arm and threw her to the ground, then teased her for having Aspergers. She said that he always teases her and he says that ‘she will always have it, so haha!’

My heart broke as she sobbed about how different to other kids she was and she didn’t know how to fit in.

I have contacted the school to let them know that this in not good enough and I want some answers now. I know exactly who said it and I do think it is ironic that his older brother has Aspergers as well.

The Year 5 students have buddies who started Prep this year. The girl has a very lively little girl who is very strong willed. Yes it sounds like a perfect fit as this is what the girl is like, but in reality the girl doesn’t need this. She uses her recess and lunch breaks to unwind and can’t do that at the moment. This buddy of hers drags her around the school yard and won’t let her near her own friends. Yesterday the buddy was so demanding about going to the library at lunch time that she threw the girls lunch into the bin so that they would get there faster. She rips books out of the girls hands and throws them on the ground if she thinks she is not getting enough attention…. and it goes on.

She also doesn’t like a lot of contact, or it has to be on her terms, so to have this buddy hanging off her and pulling her in every direction is just enough to tip her over the edge. The teachers say that they have to be firm with them, but that is easier said that done, even with a ‘normal’ person, let along a 10 year old girl with her own issues. If this is trivialised then this mummy will be on the warpath!!

After school she happily went off to her dancing lesson. She has been asking us for years to do dancing but until now we thought she wasn’t ready to go, between her arthritis and her lack of social skills. But she is giving it a good go now.

She cried coming home from her lesson because she said that she just got shouted at the whole lesson. When we clarified what she meant, she said that the teacher would be on the other side of the room shouting at the girl to hold the barre correctly, for example. Now I will be going back to the ballet teacher to explain (again) how the girl cannot comprehend the tone of her voice, that even if she is NOT angry/mad/exasperated the girl will interpret a loud voice as any of these. Then she gets stressed and then makes more mistakes which in turn makes the teacher ‘yell’.

My heart is breaking for her, I want to be able to fix it all for her and just keep her home where she is safe. The world is just too confusing for her at the moment.

No wonder she was upset last night, we let her cry and get it out and gave her heaps of cuddles and love.

Please excuse me…

This is a sad week for me.

6 years ago the girl was hospitalised with a swollen knee which turned out to be Juvenile Arthritis. She was 3 at the time. She woke up on the Monday with a very sore and swollen knee, and came out of hospital on the Friday.

On the Saturday morning we received a phone call to say that my Dad had just died.

My heart broke.

Please excuse me if I am not the happiest this week.

 

Arthritis and the girl

Last week I had to take the girl for a blood test. That was fun! But not as much fun as the time before when I had to chase her around the pathology unit trying to catch her. I felt like a right idiot that day!

This time she was good, as she discovered that it didn’t actually hurt that much, so she just sat there not looking at the nurse and the syringe.

She has Juvenile Arthritis in her knees and ankles and the blood test checks her antibodies and also to make sure we are not poisoning her with the methotrexate medication she is on.

When she was three she got up one morning and said her leg hurt, but she was walking ok so I didn’t really think much of it. A little while later she said her leg still hurt, so I pulled her pyjama bottoms down to have a look at her leg and nearly fell over in shock. Her knee was completely swollen to the size of a grapefruit. I took her to the doctor straight away as I figured it wasn’t good to leave it like that. He didn’t know what it was but suggested we head to the hospital right away.

When the diagnosis came in about arthritis we were transferred to Monash Medical Centre, which is basically our second home now with both kids being treated there! She stayed in hospital for 4 nights whilst they ran all sorts of tests and scans and drained her knee of fluid. She was put on anti-inflammatory medication and began to have cortisone injections in her knee every few months.

Her doctor noticed that her other knee had begun to swell, so that was treated as well. Every time she had to have fluid drained and the injections done, she had to go under a general anaesthetic as she was so distressed about the whole procedure. Then for three days afterwards she was not allowed to walk or bend her legs, and she had leg splints put on. It was all very distressing for a young girl.

Then one ankle swelled up, then the other. I remember being in the waiting room at the hospital waiting while the procedure was done, and the doctor coming out to tell me that the arthritis had got to her last ankle, and I just burst out crying – I was so upset that it was happening to her, and she was only 5 at the time. It wasn’t fair. She already struggled to walk long distances, and couldn’t ride a bike and it just made my heart break.

We struggled on for a few more years, until the cortisone injections by themselves weren’t working anymore  and then she was put onto the stronger medication. She has now been on the Methotrexate for about 18 months and so far that is holding it down. Giving her any medication is an adventure itself, as she absolutely refuses to take anything. Anything we give her has to be hidden in a drink. So I crush up her tablet once a week and mix it in a little milk and hope she drinks it. The same goes for the Melatonin she has every night to help her sleep, and the ritalin she is on for the Aspergers. Poor kid! (Don’t dare tell her)

She has her next check up tomorrow, so fingers crossed for a good outcome.