Sunday, 30 October 2011
Oh hell its that time of year again! Halloween! The time of year when other people's annoying children come to your door at least a million times begging for sweets. Its that time of year when teens chance their luck and come to your door begging for money! Do they honestly think that pulling their coat hoods up and shouting trick or treat will impress me? Well it doesn't! Now I know I sound like a 70 year old post menopausal moan but I'm not honest! Halloween for us causes a huge amount of stress. FD hates it! She gets very stressed about the whole expectation that she will have to get dressed up. She gets a little nervy about fireworks and just generally has a meltdown about the whole thing! Of course, she can also be completely contradictory and insist on decorating the whole house to look like something from the Amityville Horror! No one said autism had any strict and set in stone rules! I swear living with an autistic child is like living with a fortune cookie. You just never know what the hell you are gonna get!
So, this year we have been trying to play it all very low key. However, my bosses husband decided to put a spanner in the works by organising a surprise 50th party for his wife........on the Halloween weekend! I mean nooooooooooooo!!!! what is he thinking!? I couldn't go to a party and leave FD with her brother when there was the potential for her to go into mega meltdown! But on the other hand, I really wanted a night out! Oh decisions, decisions! So we decided that the best option would be to bring FD with us! It wasn't going to be a huge drunken affair and there were going to be other kids there too so I felt it was appropriate. Plus it would mean that I had to behave, not get drunk and fall through the front door at 3am! Not that I've ever done that! (nose growing to Pinocchio size proportions here!)
Bringing FD to a party was not straightforward however. We told her a few days in advance that we were all going to a party in order to fully prepare her. She seemed ok about it all until about 2 hours before we were due to go. I tried to help her pick an outfit to wear. I assured her there would be no dressing up and she should just wear something nice. She has an entire wardrobe full of beautiful pretty girlie clothes. The choosing of a suitable outfit caused a mega meltodwn for her however! She did not want to wear any of her pretty clothes because that would mean that someone might tell her she looks nice, thus putting her into the centre of attention which she doesn't want! So, the whole clothes issue resulted in meltdown with FD punching herself in the face and pulling her hair. Once I assured her she could just pick whatever she wanted to wear she opted for jeans, trainers, a tee shirt and a hoodie!
Next meltdown was caused by the fact that my bosses daughter was going to be at the party. She is a year older than FD. FD was worried about what she would say to a 14 year old. She asked me what did 14 year olds like to talk about. How would she answer any questions this girl had. What if she didn't understand her? I told her that they liked to talk about the same things her other friends at school or youth club talked about. But FD stated, 'but all my friends are like me. They have a learning disability or have autism and I am happy when I talk to them.' Oh dear. Last year I had set out to try and build up a network of non learning disabled friends for my daughter because I knew that sooner or later she would be facing a big old world that was not as protected as the one she was used to. However, due to her health issues and problems with her old school it all fell by the wayside as we were conscious of overloading her. However, now, here she was telling me in a round about way how the outside world and the people in it frightened her! I'd always know that those on the Spectrum struggled day in and day out with social interaction but it was the first time my daughter had actually vocalised her worries. It did bring a lump to my throat. After lots of reassurance, she agreed to get ready for the party.
So, off we went! Thankfully when we arrived we spotted a friend who was, like my daughter horsey mad so she chatted to FD to put her at ease. We hung about in the kitchen for a while so that FD could get used to some of the new faces. However, after a while she soon moved into the living room and played on the Wii with my bosses son. She had no clue what she was supposed to do but didn't go mad when I left the room. She even ate some food which is great as we are struggling to get her to eat much at the moment. As for the other teen girl there, FD soon relaxed and enjoyed the interaction. Thankfully this other girl is aware of FD's needs and has offered to take her to the cinema some time which is great. She's a very mature young lady and I was thankful she was so natural with FD. It was all going swimmingly until............my friend arrived wearing a witches costume! No idea why cos it wasn't a fancy dress party but she decided just to dress up for a bit of fun! She's a mentalist! Poor FD didn't know what to make of this mad woman bounding through the front door in a witches dress and green makeup! Thankfully she stayed calm and in the end thought she was quite funny. She did keep asking me however if I was going to go and buy a similar dress!
All in all the night was a success. FD coped remarkably well at the party and was happy to sit with some of my work colleagues and chat to them or simply sit and listen to the conversations going on around her. At times she did talk and talk non-stop and I could see some people start to glaze over. I wanted to scream 'welcome to my world'! She talked nonsense the whole way home in the car and was still chattering at 3am, despite being put to bed at midnight! We are having our own little, low key halloween party at home on 31st October. There won't be any dressing up and we might hide from anyone coming to the door. But FD will be happy and so will I!
Sunday, 16 October 2011
It appears to have been over a week since I last blogged. Not a lot happening here in the jontybabe household this week. Well nothing out of the ordinary. Actually no scrap that. There's never anything ordinary in this house! Let me have a think back to what my week has been like.......................(cue dream like music)...........
The start of the weeks saw me sneaking out of work yet again for yet another Fashion Diva appointment. I seem to have tons of them lately and whilst work are great about letting me get away, sometimes I feel like the worlds worst social worker, always asking for time off. So, sometimes, just sometimes, I sneak off for an hour. Of course I justify this with my conscience by not having a lunch hour. So, there I was hurtling down the road faster than a rat up a drainpipe to make it to a parent/teacher meeting. I made it in time with about 20 seconds to spare! The meeting went great and FD is making good progress in her new school. She is very happy and settled which means we are very happy parents. Her only gripe is that a boy on the bus keeps asking her out and she is getting quite annoyed at him because he 'is a dork'! I just hope she doesn't break the poor boys heart! After the meeting poor FD was practically chucked in the car as we attempted to get to the flu jab clinic on time! After spending 10 minutes trying to get FD to agree to get out of the car to get the sodding jab, the clinic had been cancelled. Of course I was not the most understanding of people with the receptionist at the clinic. 'what do you bloody well mean the clinic is cancelled'?!!!! FD is standing beside me jumping about with excitement singing, 'no big needles today hooorrayyyyy'! I was informed by the very hassled looking receptionist that the nurse practitioner was off sick today and a message had been left on my home answer machine. Not a lot of help since I work all day!!! AND I DON'T WORK AT HOME!!!! It appeared that whilst I had an appointment to get my jab at the weekend, FD was not permitted to come down and get hers because 'they don't do kids on a Saturday'! Helpful? Nope!
Anyway, moving on because I can feel myself wanting to pull my eyeballs out and shove them down the receptionists throat. Since my daughter started in her new school she has made good friends with a boy who has no speech. How this happens I don't know! I suspect my daughter saw an opportunity to continue to talk non stop with a person who couldn't interrupt her! Makes sense! Apparently the boy in question uses a bit of MAKATON sign language and FD has been picking it up. She has expressed such an interest in learning it that her teacher has enrolled her in a class. This is great for her. Not so good for us because now and again she decides to sign instead of talking to us and as I only have a limited knowledge in Makaton it can be confusing! I suppose we are just going to have to man up and learn the bloody thing too! However, not sure what my daughter meant when she said............"I just had to tell 'Joe' to shut up yesterday because he was doing my head in"! Errrrr but the poor boy doesn't speak? Did he just sign her to death or something? The mind boggles!
We did almost have a bit of a mini meltdown during the week as FD was making her debut in the school band. She was to play in front of the entire school at assembly. She had a bit of pre - assembly nerves, unsure if she would be able to play her tambourine or shaker properly. (Yes she is so talented that they gave her two things to shake about!) After a bit of a chat about how she had now rethought her plans to apply for the X Factor because she didn't think she could handle the stress, she eventually calmed down and chatted about how Elvis coped with his stage fright. It appears that Elvis is our theme of the month! We have had non-stop info sessions over dinner about his life, his parents, his daughter etc etc etc. Its never ending at the moment and I thought at one point Afro Boy was going to plunge his fork into his ears just so he wouldn't have to listen to any more! The constant Elvis trivia combined with the Christmas songs which are now continually being played at the moment makes me want to rip my own ears right off!!!
This week also saw FD attend the orthodontist to have her brace tightened and an appointment made for her to have a tooth removed so she could have the 'train tracks' fitted to her teeth. She has to be booked into hospital for this and given an anesthetic as she would not be able to sit long enough to have this done. She's quite excited about the whole thing as she is hoping that I will give her £5 for this tooth! Its unfortunate she doesn't believe in the tooth fairy anymore as I could have gotten away with £1 per tooth!
feck! I needed to clean the bathroom before I went to the clinic! My mother could do Kim and Aggy out of a job. An aroma of bleach follows her around and her house is super sparkly and pristine! So, rubber gloves on, I cleaned the bathroom like a woman possessed and bleached everything in sight! At least if I died my mother would be proud of my bathroom! Needless to say, in case you haven't guessed, I didn't die! The jab was completely painless and I didn't take any sort of reaction at all. In fact, an hour after getting it I was running round the riding school with FD during her riding lesson! But hey, at least the bathroom is clean!
FD would be quite prone to sore feet at the moment. During the week when I went into her room to tuck her in to bed she was lying on top of the bed playing on her ipad. As I walked into her room I noticed she had a large black mark on the sole of her feet. My heart sunk! I was convinced she had some sort of infection on her foot. As I got closer to her I noticed that the 'infection' had a distinct pattern! It was actually a series of love hearts and the name of a boy she is madly in love with written in black Biro on her foot. (She is in love with her brothers 18 year old friend who has an alien shaped head! Theres no accounting for taste!) FD is double jointed so she must have twisted her leg and foot right round to write on it because the writing was super neat! I didn't know whether to be impressed by her writing or frustrated that she had written on her foot at all! She looked at me rather sheepishly and grinned. I couldn't help but laugh and kissed her good night! Some battles not worth having! It was kind of sweet! Was gonna be a bugger to get the Biro off her foot as she won't let anyone touch her feet! I'm sure it'll wash off ........ eventually.
Wednesday, 5 October 2011
The wonderful FD has been having riding lessons for about 4 years now. Every Thursday her support worker from a learning disability charity has collected her and some other kids after school and brought them to their lessons. It was a lesson set aside especially for kids with learning disabilities and my daughter has loved it. Unfortunately, the charity that organised it has had its budget cut and there is now no-one available to support my daughter and her friends during these lessons. Therefore, the Thursday lesson has been cut. FD was devastated. So, now the lessons have been reorganised for a Saturday afternoon and the parents are now able to support the kids. Organising this ourselves has also meant that we don't get the subsidised lessons but hey ho needs must. Tightening of belt required again! Unfortunately only 2 other families able to make it to the lessons now.
So, on Saturday off we trotted to the lesson (pardon the pun). Now, I have not seen FD on a horse for a couple of years, since her very early lessons. Because the lessons have always been on a Thursday afternoon when I am at work, its been impossible for me to attend. I am now so happy to be able to go with her. Wearing my gorgeous pink flowery wellies, and looking like a complete numpty, I carefully picked my way through the mounds of horse manure in the riding school yard. FD of course was dressed for the part with her jodhpurs and riding hat on.
Once inside the riding arena type place (well I don't know what the proper name is!), the kids horses were brought out. Well I nearly passed out on the spot when this HUGE white thing was brought for my daughter. How the hell was she gonna manage this! But apparently she had ridden this horse quite a few times and they were good mates! (Well they were until FD called her horse a 'lazy bit lump' halfway through the lesson because he just wasn't going fast enough for her!) Anyway, You can imagine my amazement when got on the bloody thing and took off! She was like National Velvet! Because she was having a new instructor today who just wasn't as familiar with FD's capabilities as her previous instructor, she made me run alongside the horse as did the other mums with their kids and horses. Picture the scene..........3 exceptionally unfit mums, one of whom had the flu, trying to keep up with horses and hoping their kids don't fall off! Now try doing that in wellington boots and a coat! Not easy!
The riding instructor barked out orders to the kids and the kids totally amazed me, particularly my daughter! They knew exactly what they needed to do! Especially my daughter who had the most riding experience. This is a child who sometimes finds it difficult to follow simple instructions. Who gets confused very easily. Who lacks confidence. Who needs constant supervision! Yet here she was making a rather large horse weave in and out of poles, trot and make the horse do exactly what she wanted! I was speechless! Its rather difficult being gobsmacked, bursting with pride and trying to avoid being trampled to death or avoid the horse having a poo on you all at the same time!
I think what the entire experience has taught me, apart from wearing comfortable footwear and reminding me I need to start going to the gym again, is that our children never fail to amaze! My daughter may be unable to do so many things but its always nice to remember that there is lots she can do! She was flying by the seat of her own special Superwoman knickers!
Sunday, 2 October 2011
This post was written as part of the Special Saturday theme . This weeks theme is about us all introducing ourselves. On my blog I have done some introductions to my family but this post is just an overview of my family. So here goes.
My name is jontybabe and I am a 41 year old social worker. My family is lovely, unique and totally crazy at times!
The Fashion Diva is 13 years old. She has a severe learning disability, autistic spectrum disorder, epilepsy and scoliosis of the spine. She is horse mad, man mad and is a total talking machine. She doesn't sleep great because she is too busy singing Wham songs all night!
Afro Boy is 18 years old and is at college. He is a total computer geek and is on a computer course so that he can be the next Bill Gates! He is a loving, caring and wonderful human being and I take full credit for that! He loves his sister so much and has always helped to care for her!
The Princess is 16 years old and is my lovely stepdaughter. She is madly in love at the moment and floats around on a cloud most of the time! If shopping was an Olympic sport then she'd have won a gold medal by now! She is beautiful and funny and a total daddy's girl!
The Human Dynamo is 10 years old and is my lovely stepson. He is totally mad. He never tires out, and is football crazy. He's gonna be the next George Best! He will stand his ground if he thinks he is in the right and is a mini version of his dad!
OH is my wonderful husband. He's 42 and is a number cruncher! He is a golf fanatic and a crazy Beatles fan! He makes me laugh every day of life and I love him!
There ya go! I started blogging as an extension to my diary writing days. I'd always kept a diary growing up and blogging seemed to be the next step to that. I suppose this blog is mostly about my daughter and the difficulties and laughs of raising a special needs child. Sometimes I write about mundane things. Sometimes I write funny things. Sometimes I write garbage. I just enjoy writing but unfortunately don't get nearly enough time to do it! I hope the blog makes people laugh, whilst at the same time educating them around what life is like on the Spectrum. Special Saturday is a brilliant idea started by the lovely Wendy over at http://www.savette.com/. Check it out. Happy Saturday!!!
Posted by JB JOHNSTON at Sunday, October 02, 2011