The birthday from hell

Today was my birthday.

And I cried.

It was decided that we would go out for lunch to celebrate, just the four of us……I don’t know what I was thinking!

After an hour or two of kids stuffing around and still not getting dressed, or whinging that they didn’t have a plan white top to wear (the girl) and getting upset set when I said I couldn’t just materialise it out of thin air, and the boy not putting his shoes on and cavorting around the house annoying the dog, the man and I walked out.

By ourselves.

By the time I had reversed the car down the driveway both kids were standing outside the house with their shoes in their hands ready to go.  The boy was very apologetic about making me sad and the girl was whining about her socks being dirty.

The kids were excited as we were having pancakes for lunch and they love pancakes. They liked the sound of the pancakes that came with chocolate syrup, ice-cream and sprinkles, but the girl was unsure whether she would like it on a pancake, so I got them to put all the side in separate jugs on the side of the plate. The waitress must have thought we were mad!

As predicted – the pancake tasted different and the ice-cream tasted different so both went uneaten by the girl. But she managed to eat all of the chocolate syrup with no problem. That would have filled her up!

Back home we went where the girl promptly asked for something to eat as she was hungry.

Then it was time to go to my mothers house for dinner. As predicted, the kids wouldn’t cooperate. The boy was playing with a ball in the hall and wouldn’t do anything he was asked and the girl was flapping around doing whatever she was doing. The man had the audacity to raise his voice which caused the boy to shut down completely.

At this point I burst into tears (again) and left the house. I drove to my mums house crying and had a birthday dinner without any of my family. My Mum, Nana, Sister, Brother in law and my niece and nephews were on hand to sing me happy birthday but not my own family.

I got to watch normal kids do normal things and it just made me feel worse. I felt very sad and worn out by it all.

I know that the boy and the girl can’t think of anyone but themselves but I do wish they could. It is not nice feeling very unimportant all the time.

I will get over it and move on, but today I am sad.

 

Scarred

The boy and the girl see a Psychologist on a regular basis and the last time that she was here she was having a chat to the girl about learning to like Aspergers.

The girl was saying that she didn’t like telling anyone that she had it because she had been scarred by a friend a couple of years ago. The girl had told her friend that she had it and swore her to secrecy but of course kids being kids this friend told the rest of the class. Now I doubt a class full of nine and 10 year olds actually knew what it was, but it was fun to tease the girl about.

The Psychologist was getting the girl to list all the good things about it and to try to break down her negative perception of it, and of telling anyone as otherwise she will still be hung up on this incident in twenty years, unable to move past it.

It got me to thinking of a few incidents in my life that had happened, and still upset me if I think too hard about them.

The first one was when I was in primary school about Grade 4 and I was singing in the Choir. I loved singing and had fun being with my friends. A girl near me in the row told me I couldn’t sing, so I left the Choir without telling anyone why and have hated singing since.

The next memory was and still is a painful one – one that has caused me much grief and sadness and stopped me liking a single moment of the last 2.5 years of high school. I was in Year 10 and I had a nice group of friends, or so I thought. One day as I approached them at recess or lunch time I saw them look at me, talk to each other and then run away.

I was devastated!

I had no idea what to do next, and any smidgen of confidence I had in myself had now gone. There was no way I was going to attempt to approach them again, and I don’t think I spoke to many people at school for the next two years.

I always had an outlet in the way of sport. I have played or done a sport of some kind all my life, and at one point used to compete in Cross-Country Skiing. I had worked my way up the rankings and had been invited away with the National Team on one of their training camps. I wasn’t in the team as such, just a few aspiring skiers had been added into the camp. I was so excited, being away in another state and getting the chance to ski with some great athletes.

On this one particular day of the camp we all set out for a training run. One of the scheduled breaks was at a hut in the middle of nowhere, but it had a guest book in there for everyone  to write down a message in. One of the girls who was slightly older than me, and someone I looked up to, wrote a message on behalf of the whole team. I can’t remember most of the message but she signed it off with

‘……from the National team and loser hangers on’.

I still remember being so crushed by that. I felt so unworthy and stupid for thinking I could be a great skier. Who was I to think I could ever be good?

I slowly withdrew from the skiing world, again not telling anyone because of the shame of having to repeat what I saw.

It’s funny how remarks or actions by people can really define who you are and who you become. If I knew then what I know now it would be such a different story. I wouldn’t stop anyone from pursuing a sport I loved, or not have given up singing, and I would have had the confidence to ask these girls why they ran away from me, and I would have made new friends.

But I guess that comes with age and wisdom.

A new low

I hit a new low on Monday. I cried in the car park of Woolworths.

I had just raced to the supermarket to grab up a couple of things before picking up a friend for the boy to play with for the day. It had been organised the day before as the boy had been nagging me to play with this other boy for ‘days and days and days’. (Confused much?)

I got a text message from his mother saying that today wasn’t going to suit after all and could we please change it to tomorrow.

As I envisioned the meltdown to follow, the screaming that I am a moron, the throwing of whatever the boy could get his hands on and the horrible, horrible atmosphere I just burst into tears. I sat there and howled and was mighty glad of the tinted car windows.

I couldn’t bear to go home to be greeted by this but as I figured that no-one was going to ride in on their horse to save me or the day I was going to have to.

I need me a hero!

Merry. Freaking. Christmas!

What a day! Or days… or week or whatever.

I know I haven’t written for months, haven’t had the energy or inclination but I am still here apparently.

So we have done Christmas and New Years Eve and now it is the long summer holidays. Three more weeks til school is back! Not that I am counting too much because it is nice to have a break from the mundane routine of life.

Christmas was very stressful for me because of the boy. He didn’t understand that you don’t get everything (and sometimes anything) from your Christmas list because of various reasons. I tried to explain the cost of items he was requesting, or the suitability of items. Apparently Santa could just buy him anything that was too expensive, and anyway, he was going to ask Santa to bring US money so we would have lots and lots and lots.

Hmmm…..don’t you just love 9 year old mentality??

The end result was a very stressed mummy who was racking her brains trying to think of something that wasn’t on his list which included a dog (not going to happen because I don’t want another child to look after) and various guns (his current obsession)

*sigh*

Enter a WiiU

We had a Wii console but it had broken, and had been lying dormant for many months. It was going to be expensive to fix and I refused to buy a different games system as we already had a heap of games. I asked the very knowledgeable 12yo in the shop (ok, maybe he was 18) if the old Wii games would work on the new WiiU?

‘Oh yes’, he assured me, ‘all the old gear works so it will be fine’.

Fast forward to 6.55am on Christmas morning and the man set about sorting out the new toy.

It. Didn’t. Freaking. Work!!!!

There was tears and tantrums and name calling – and the boy was quite upset as well.

The man accepted it as something else that was destined to go wrong in our world and nearly cried. All we wanted to do was give the boy something that would put a smile on his face and take the pressure off us for a while. We couldn’t afford to give the kids much this year so that’s really all the family got.

It made for a very quiet Christmas Day. We were all feeling a little defeated and sad, and after a very long lunch out at my sister’s house I came home and spent the evening in tears before crawling into bed.

The next day just after lunchtime – after we had had 48 meltdowns from the boy about the lack of cooperation from the WiiU (Which I had quietly christened the FuckU) – and the man was just about to drop-kick the thing back to the shop, the boy suddenly shouted that it was working!

No freaking way!!

Cue party time and sighs of relief all round.

 

 

 

 

Pass the wine

We are just in the middle of one of our nightly fights with the boy. Apparently because we are trying to make him brush his teeth we are bad parents who don’t care about him. He has just been literally dragged kicking and screaming into his bedroom and been told to put himself to sleep and that he has to stay there all night.

By himself.

Impossible!

It breaks my heart to see him act like that. I hate being told I am a bad parent by him when I love him to bits and would do anything to not see him hurt.

I don’t get why he has to shut down every night when asked to brush his teeth. Up until that point he is a happy cheery boy, and it’s like a switch just flicks inside his head. He won’t tell us why he won’t brush his teeth. He does it without fighting in the morning so it is not a sensory issue.

Drives. Us. Crazy!

The girl is in her room shouting for everyone to be quiet and that she is trying to learn her spelling words! She couldn’t care less about what is happening. I wouldn’t expect anything else from her though.

As I have written all this I caught him sneaking out of his room to go and brush his teeth. I don’t get why he does this after 15 minutes of screaming about it, and making the man and I sad and upset in the process. Now we will sit here all evening feeling like we are failures.

Where’s the wine tonight? Anyone….

I’ll update you on the sleeping issue later.

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.

 

Mum fail

I felt like an epic failure yesterday.

We have finally started the formal diagnosis of the boy. Or as I like to say – just throw all our money at the specialists!! I have decided that I will just call myself a specialist and see who can throw some money at me…. do you think it’ll work?

I took the boy to his first speech pathologist assessment yesterday. First of all I forgot the paperwork that was needed for the therapist to get all the proper details. I have so much paperwork it is coming out my ears, and I just forgot which doctor needs what forms filled in. So anyway, I had to do it whilst she was talking to me about the boy. I also didn’t have any reports from all the hearing tests he had years ago, or the details of his current doctor for his kidneys etc etc.

Then I couldn’t remember what his first word was, or if he babbled baby language at 6 months. It’s ok I said to her, I will check when I get home as I have it all filled in in his baby books.

Wrong!

There is nothing in them. I never did it. I remember when he crawled and walked, but not when he spoke or didn’t.

Feel very bad right now.

Will fill you in on the details of how the assessment went (or didn’t) later. Did I mention that he shuts down when strangers try to talk to him? Der… that’s part of the problem. You would think these autism specialists would know how to deal with kids on the spectrum. Wouldn’t you?

The little things

It is the little things that make me sit back and think that we must be doing something right.

The little kiss the girl gives me as I am reading her her book at night.

The cuddle I get from the boy before he runs off to play with his friends at school.

It is all so hard now.

I am struggling to keep myself upright at the moment

I wish I could cry, but I am unable to.

But it is these little things that keep me going.

A special handmade card.

A kiss.