Question time.........again!!!!

This is a list of questions my daughter has asked me in just one day.  She constantly asks questions, even following me to the toilet to ask me some more. Below is just a small example of some of them.

 

1. Will I keep my pants on during my back operation?

2. Why is the dogs bum a different colour than the rest of him?

3. When I can I use those tampax things you have in your bathroom?

4. If I sit in the bath when you pull the plug out will it suck my bum down the plughole?

6. Is my riding instructor gay?

7. If my riding instructor is gay does that mean he can go out with your gay friend?

8. When I fall asleep do spiders sneak up my nose?

9. Do you think my boobs will be as big as yours when I grow up?

10. Does God know my riding instructor is gay?

11. Does God mind my riding instructor is gay?

12. Are we going to have hail stones this week at all?

13. Is the guy who works in the pet shop too old to be my boyfriend?

14. Does the queen fart?

15. Do you think Prince Harry would give me his telephone number?

16. When we win the lottery will you buy a house with a swimming pool?

17. Is it true that if I press my belly button my bum will drop off?

18. If the dog eats a balloon will he bark in a funny voice?

19. If the dog eats a balloon will he fart in a funny voice?

20. Will I be allowed to eat takeaway in hospital?

21. Why does the psychologist talk in a funny voice?

22. Do you like that man's hair?

23. Do you think that man likes his own hair?

24. Why does asparagus make my pee smell funny?

25. What are piles?

26. Do you have piles?

27. Do you think I would look nice if I shaved my head?

28. Does my dry skin mean my body is falling apart?
29. Is he / she a millionaire?
30. Would we be able to build a swimming pool in our garage?

And there you have it! This is what my life is like! Sometimes my ears are almost bleeding by the end of the day with the constant onslaught of questions. I know I really should appreciate the fact that many autistic kids are non-verbal and there are lots of parents out there who would give anything to hear their child ask questions, no matter how silly or annoying those questions were. When FD was younger she attended speech therapy because she would only say the middle part of a word and miss out the start and end! Now those were trying days! Don't get me wrong, I do appreciate what I have now. But, sometimes when all you want to do is sit your bum on the toilet for a few minutes and not be disturbed it is a little bit of a pain.

When I reflect back on why FD feels the need to ask so many questions, of course the answer is glaringly obvious. She is trying to make sense of her world, constantly looking for answers the life's little queries. Whilst many things seem glaringly obvious for us, for her they are not. During the days when there is never more than a break of a few seconds between questions I try to remind myself of this and think about having a little bit more patience. Not easy when you are exhausted and have literally not even gotten your key out of the front door to be hit with a question! But I will try! I'll just pull my superwoman knickers up over my belly button and prepare my ears for what is to come!

Sausages and chips please mother!

This post was written in conjunction with Special Saturday which aims to promote awareness of special needs. You can find Special Saturday on Facebook HERE. Follow us on Twitter too @specialsat and use the hashtag #specialsaturday to link up.

The theme this week is food - eating - feeding. For those children with special needs, everything associated with food and feeding can be hugely problematic. For us, FD just simply doesn't like to eat. That is of course unless its sausages and chips with copious amounts of tomato ketchup. I know I've probably blogged about FD's eating difficulties before but I'm just going to bore you all to death once more all in the name of Special Saturday which I love!

FD's eating difficulties are quite varied. When she was quite a young child in primary school I noticed that she became quite upset when sent to school dinners because the mashed potato in school was a slightly different colour than mine. To me, mashed potato is mashed potato. It all looks the flaming same to me! But to my wonderful daughter it didn't! It was a different shade of mash! It was a different taste! It was a different texture! Things like this hurt my head trying to think about it. I just had to accept that food eaten outside of the house often upset or confused her because it was just not the same as the food she ate inside the house.

Another difficulty we encountered was that if FD was to have school dinners then we had to ensure that she knew exactly what food she was having for her evening meal at home. She was terrified she might be given the same meal twice in one day! Despite reassurances that this would not happen she needed a visual aid to help her understand this. So, we put together a weekly menu board for her so that she knew what food was coming on a daily basis. Unfortunately, having school dinners created so much anxiety and was problematic that it soon became easier just to let FD take a packed lunch to school.

FD's eating difficulties do spiral out of control at times and every day is a struggle for us to get her to eat anything. She will have days were food related meltdowns are the norm for the day. She doesn't want to eat. She doesn't feel hungry.  Its difficult not to make such a big issue out of the whole thing because to say I am worried about how little she eats is an understatement! We have a dietitian who has tried to tempt FD with specialist milk shakes called Skandie Shakes which are basically fortified meal replacement milkshakes so that if FD skips a meal then she is still getting her nourishment from somewhere. But, will she drink the sodding things? Will she heck! So, we got creative and made up the shakes and put them in a McDonalds cup. This child is not stupid I can tell you. She spotted the difference instantly! So, now she won't take them! Arghhhhhhhhhhh!

Of course, in the wonderful world of special needs nothing is ever completely straightforward and  uncomplicated. For just as FD would prefer to go through an entire day not eating, when it comes to her evening meal she eats like a woman possessed and has to be told to stop before she is sick. She eats huge evening meals and drinks about a pint of milk! It seems she would just be happy to survive on one meal a day which I suppose she is. She's a skinny child and at times her thin arms look like they could snap in half!

No doubt the food issues will always be present for FD. They may evolve over time into something completely different but I am pretty sure they will always be prevalent. I don't think its something that will disappear overnight. I wish it would! Poor skinny FD is going to need her knicker elastic tightened on her Superwoman knickers because of her tiny waist at this rate!

Self as Child Blog hop.

This post is written as part of a blog-hop promoting an exciting new concept called YouthTube! As perfectly described  'The theme of the Blog-Hop is, Self as Child. What did you think of yourself as a child? Or can you think of any theme related to this...inner child, a relationship with a child that makes you reflect on your own childhood...?'

Looking back on my childhood I was a moody and sullen child who was insanely jealous every time I listened to all my friends at school talk about the great family holidays they had and the new car their dad had bought. I found it strange that people sat down around the table to eat meals as a family and that they even got pudding every night! I suppose what I found most amazing was that everyone, as far as I knew had relatively normal lives where the police didn't come to the door or there were no midnight dashes in barefeet and night gowns when the arguments got too much.

The one thing that defined me however as a child was my books. I always had a book in my hand. It was who I was. I was the reader! I was a princess imprisoned in a tower with only my books to help me escape! I know it all sounds a bit dramatic but that's exactly what my life was. When I tell all those school friends, who I am still friends with just what went on they are stunned. They had no idea as I never told a living soul. Secrecy was the word of the day in our house! Books were my saviour. When I close my eyes and think about myself as a child I always see an image of me in sitting on my bed. The bed is under the window but the window is too high to see out of if I lie on the bed. I have a couple of pillows propping me up and I have a book in my hand. This is me. This is Self as Child.

I recently wrote a blog post called 'A Different Kind of Love Affair' which describes my childhood and how my love of books meant everything to me as a child. You can catch this post HERE . I submitted this story to an anthology called 'Every Child is Entitled to Innocence.' This is an anthology of stories from both happy and sad childhoods. I wrote under the name JB Johnston if you happen to buy the book, which you can HERE.  The book was put together by the wonderful Niamh Clune who spearheaded the project and who set up PlumTree Books. All proceeds go to Child Help Line International. The idea of Plumtree is to 'celebrate being artists, whether writers, book designers, technicians, editors,... musicians, photographers or poets.' Plumtree has many projects and I am proud to say I have participated on one of these projects.

Plumtree's latest project is called YouthTube and as described by the lovely Niamh Clune who is one of the brains behind the project 'Youth-Tube is a new enterprise, for children 12 and under, that encourages early literacy and children's creativity. We are offering a safe and constructive environment for children to share art, stories, favorite books, music, etc'.

The beauty of this project is that all children are welcome to participate and YouthTube is particularly interested in having children with special needs participate.  It would be wonderful for the world to see through art or writing how our very special children view themselves and the world. As we know, our lovely children  have their own wonderful, interesting and beautiful take on the world they live in. Its important to share all this with the world to educate others and raise special needs awareness. Plum Tree Books took part in Autism Awareness during April and helped promote and educate others about Autism. Many of the very talented writers associated with Plum Tree Books contributed to this and wrote some amazing blog posts.

This is a great opportunity for our children's artwork to be showcased. All the relevant info can be found HEREwith details of submission guidelines etc. The submissions deadline has been extended past the original date of 15th May. Go on! Get your children on board!
Check out some of the other amazing blogs that have been taking part in the blog hop promoting Self as Child throughout the month of May.

Tues 1st May: launch on the event page:http://www.facebook.com/events/314596525276392/
and on http://www.facebook.com/PlumTreeBooks

Blog: http://ontheplumtree.wordpress.com/

Wed. 2nd - http://passionfind.wordpress.com Tonia Harris

Thurs. 3rd - http://thefairytaleasylum.wordpress.com/ Marta Pelrine-Bacon

Fri. 4th - http://www.shevata-cccole.blogspot.com C.C.Cole

Sat. 5th http://hiddenearthseries.blogspot.co.uk/ janet Young Beasley

Sun. 6th - http://thebumpyroadtopublishing.blogspot.com - Deb Hockenberry

Mon. 7th -http://ontheplumtree.wordpress.com - Niamh Clune

Tues. 8th - http://sooziebird.blogspot.com/ - Susie Bertie

Wed. 9th -

Thurs. 10th -

Fri. 11th - http://girlseeksplace.wordpress.com - Brianna Soloski

Sat. 12th -http://optymyst.wordpress.com - JanCan / @OptyMyst - Not Quite Dead Yet

Sun. 13th -

Mon. 14th - http://lorhainneeckhart.wordpress.com/ - Lorhainne Eckhart (The Choice of Giving)

Tues. 15th -http://www.Heartspoken.com - Elizabeth Cottrell

Wed 16th -http://loraneleavy.blogspot.co.uk/ Lorane Leavy

Thurs: 17th: This Kid Reviews Books http://thiskidreviewsbooks.com/

Fri 18th - http://aprilthomasbooks.wordpress.com April Thomas

Sat. 19th -www.jontybabe.blogspot.com Jonty-Babe

Sun: 20th: http://darlenefoster.wordpress.com/ Darlene Foster

Mon 21st - http://steepedinbooks.blogspot.com Georgia Saunders

Tues. 22nd -http://marthamoravec.com/2012/05/too-fat-to-live/

Wed: 23rd May: Tom Harris http://tomdharris.wordpress.com/

Thurs. 24th -

Fri. 25th -

Sat. 26th -

Sun. 27th - http://passionfind.wordpress.com Tonia Harris

Mon. 28th -

Tues. 29th -

Wed. 30th -

Thurs. 31st -

Back to the future!

The future. Oh my goodness. What a bloody scary thought. I think all parents worry about their children's futures. I know I certainly worry about Afro Boy's. I worry whether, in this crappy financial climate he will get a job once he leaves college. I worry about whether he will meet a nice girl and be happy. I worry about my step children too and hope they also make the right choices in life. I suppose all we can do as parents, is guide them as best we can and hope that it all works out OK. One thing I am very confident about is that we will be there for our children each and every time they need us to be. Because, that's what being a parent is about. Unconditional love.

Because FD has recently had a birthday I have been once again thinking about her future. Once I get past the worry that she isn't going to survive her upcoming surgery, I begin to become very stressed about her future. I worry about who will care for her when I am no longer around. I'm pretty confident that her brother and OH will, between them, make sure she is well cared for and happy. One thing about Afro boy is that although at times he is a lazy, smelly boy, his love for his sister is unquestionable. He is loyal to her and will always make sure she is OK. But then, that leaves me worrying about him taking on too much responsibility. This hurts my head! (My husband says this is because half the time my head is empty!) Cheeky sod!

When talking about the future FD is hilarious. She has a number of jobs listed that she would like to do when she is a grown up.

• Professional badminton player
• Professional athlete

• Working in the stables
• Social worker
• Being a waitress in her favourite cafe
• Millionaire
• Writer

So, as you can see, FD has some specific ideas about what she wants from life. For this, I am grateful that she is always looking ahead to her future. Recently she began to talk about what she would call her first baby. I almost fell off my chair. That's a future I just can't think about at the moment. I can't of course say with any certainty that FD would ever be able to care for a child. I don't even know if there will be a time when she can look after herself. But, I suppose that's a hurdle we will cross at the time. It doesn't stop me worrying however.

FD and I have had some chats about where she will live when she is an adult. She's pretty keen to remain at home all her life with the 6 dogs and a horse that she intends to buy. Of course, I want more for her than living at home with elderly parents when she is older. When we were first given a diagnoses of autism and learning disability the professionals told us that FD would never live independently. But, I am determined that she will at least live semi independently, even if that means in a supported housing community. We have been trying for some time to secure a respite placement for FD but without success. However, her social worker is confident that we will get it soon. I am hoping that respite will prepare her for time away from home and eventually a move away from home when she is an adult. At this point I'm not ready to let her move out of the house full time until she's at least 25! I'm sure that will change once she reaches adulthood. In an ideal world we will find a wonderful residential placement or supported living placement for FD and from about the age of 20 she will start to live there on a part time basis until she is ready to live there full time. Not sure how achievable any of this is but that's the plan!

I know that many people reading this are wondering why on earth I am thinking about this already when she is only 14. But, after working as a social worker in learning disability for a short period of time I came across adults living with their very elderly carers, some in their late 80's. Those being cared for had little skills in relation to being semi independent and no preparation had been done for when their parents eventually died. Suddenly we were left with very scared and vulnerable adults who had a very uncertain future. I really don't want that for FD. Of course, every ones situation is different and I'm definitely not saying that my way is the right way. But, its the route we are taking. It's what suits our situation and I am very aware that everyone elses situations are all massively different and individual to them.

Of course, none of my great plan for FD is even worth contemplating unless she really wants to do any of it. I don't want her doing anything that will make her unhappy in any way. The transition into adulthood will be paved with difficulty and raw emotion of that I am pretty sure. The guilt I feel at thinking about a time when FD moves out of home and I will eventually have some time to myself almost makes me sick with worry and guilt. I become angry at myself and angry at the world in general that we have been dealt this hand. I don't want FD to feel that she is no longer wanted at home because that could not be further from the truth. But, I want her to experience as much of life as other people her age do and to have a good quality of life full of love and security. She might have to go about it in a slightly more controlled and protected way but that's OK. I want as many life experiences for her as is possible.  It'll be a time when I'll have to dig out my industrial strength, reinforced superwoman knickers.

I'll be there for you..... la la la la la

This post was written in conjunction with Special Saturday which aims to raise awareness of special needs. You can follow the posts on twitter with the hashtag #specialsaturday or follow our Facebook page

This week's theme is friendships.  I am one of those incredibly lucky people who has a big circle of friends. Although I have lots of friends they all belong to different groups and don't necessarily all meet one another that often, apart from parties.

I have a group of 'work friends.' We don't really refer to each other as colleagues because we are friends outside of work too. With this group of people I have such fun and there's always lots of laughter. Their support in work has been amazing and I am lucky to know them. We socialise a lot, go to each others weddings, have bbq's together and generally use any excuse to get drunk! Yes I know, its not a glowing endorsement of social workers but hey what can I say. We work hard and party hard.


I also have my special needs friends who I met through my lovely daughter. Other mums who I can have a good old rant to about how life sometimes stinks! They understand the frustrations of constant medical appointments and the exhaustion that comes with a child who refuses to eat or has a meltdown that would make grown men tremble! We can relax in their company because they don't bat an eyelid when my child talks non stop about the Muppets or wails her head off over something that would be trivial to other people. These friends offer me guidance through the maze that is special needs. Without them I'd constantly get lost!

Another group of friends I have are what I call my 'random, stand alone friends.' Yes I know this doesn't sound very flattering. These are people who are simply friends to me that I met some random way.  They don't belong to any particular group and fate has simply thrown us together. That doesn't make our friendship any the less stronger and I'm actually godmother to the child of one of these friends and would consider her one of my best friends.

The next set of friends or friendships I have are those of all you lovely people. Yes you Internet buddies. You blogger buddies. You good old fellow cyber geeks! I think anyone who doesn't 'do the internet' as one of my friends says, just doesn't understand how you can have cyber friends. But, it is possible. Many many years ago I had a group of cyber friends who all clubbed money together to meet up with me after husband no1 buggered off. They paid for my flight, put me up in a hotel and took me out on a wild night out to cheer me up. There was about 30 of us in total and it was just what I needed back then. The chat room we all belonged to closed down not long after and sadly we all drifted apart. I still keep in contact with a few of them but not many. However, since I entered the world of twitter and Facebook I have found a whole new gang! I have my special needs parents friendship groups who offer so much support, love and guidance and I can't thank them enough. I also have my wonderful and inspiring literary friends - writers and reviewers who have helped me rediscover my joy of books and have inspired me to do a bit of writing. Last, but not least, there are those friends I have found in the blogosphere! You rock! But then you already know that!

But I suppose, for me, the most enduring friendship group I have are my school friends. We are a group of 6 who have known each other since secondary school. We all sat at the same table in English class or were in each others classes for various subjects. I'd say we've known each other for approximately 30 years! I have to say '30 years' really quickly because it makes me feel ancient! We all met when we were about 12 years old. There! That doesn't make me as  old as you thought I was! ner ner ner!

We are all so lucky in that we all live within a 5 mile radius of one another, except one of us who had to be awkward and move bloody miles away (well an hour by car). We all try to get out together at least once a month and heaven help the pub or restaurant that we land in because we are noisy, giggling, champagne swigging girlies. Yes that's right you heard it right! CHAMPAGNE! When we all started to hit the big 4-0 we pledged that every night out we would drink at least 2 bottles of champagne between us all. Now, don't get me wrong, its the cheapest, nastiest bottle we can find but hey its still good old champers! We might be in our 40's but someone forgot to tell our brains that. We are often mistaken for a hen party! Not really sure if that is a compliment. Quite often some of the 6 of us will bring extra friends together on a night out but ultimately we are 'the 6'! and that will never change. We left commonsense behind in our 20's. We only remember we are in our 40's when we wake up the morning after a night out and realise that -

a. we can't remember much about the night before.

b. we have lost some item of clothing or a shoe.

c. we can't walk properly because of the dancing.

d. we can't talk properly because of the singing / laughing

e. we cringe at the pictures on facebook!

I love these friends dearly. Of course they are not perfect and at times get on my nerves! Hell, I get on their nerves too!  But, we have never had a major falling out and it doesn't matter if we haven't seen or heard from one another for ages, we still pick up as though nothing has changed. Although these friends are great, and supported me when my marriage from husband no1 broke up, I don't call upon them for support with FD. They offer of course but they are limited in practical help they can offer because they all work. However, one of the girls does keep FD every Tuesday after school for me as its the one day I am truly stuck for childcare. Its also her one day off work bless her.

This group of friends keep me sane. Without the mad nights out or mad road trips and shopping trips I would go truly mad. Sometimes we just meet for tea and buns and have a good old catchup. Sometimes that's all it takes to help me. I know that they are going to be my tower of strength when FD has her surgery. I am going to be stuck firstly in the hospital for 1-2 weeks and then at home for weeks. They are going to visit me. Bring me chocolate and wine and generally keep me company.

Not many people in this world are lucky enough to have good friends. I count my blessings each and every day. As the wonderful writer Patricia Sands says in her fabby book * The Bridge Club - 'To have good friends, you have to be a good friend.' So true.

*you can read a review for The Bridge Club by clicking on my loveahappyending.com tab on my home page of blog

Birthday cake and cowboy suppers!

Last week was a celebratory week. On Thursday FD had a birthday. She was 14 years old. I have to fight back tears when I say that. I cannot believe my baby is another year older. It's driving me to drink! Not that I have ever needed much encouragement! In her usual manner, FD would not tell us what she wanted for her birthday. She does this at Christmas too. She likes to be surprised because she thinks birthday's and Christmases should be full of surprises. Ordinarily this is not a problem for a child but for FD the whole sky will come falling down if she doesn't think much of the surprise! You have got to get it just right. No pressure then. I find this one of the surprising characteristics of FD when often children on the spectrum crave order and a sense of knowing what is going to happen in advance. Fear of the unknown usually creates problems. However, in the area of presents, FD likes to differ from her autistic counterparts! That's my girl. Keeping me on my toes!

The birthday celebrations kicked off with me realising that I had accidentally bought 3 birthday cakes. I hear you all muttering, 'yeah yeah accidentally my foot!' But honest!!!! I'd ordered 2 with my shopping. One for home and one for school. Forgetting I had ordered one for home I went out and bought another one. So, it was cake overload! I ended up bringing some cake into work. Normally my fellow social workers would have fallen on the cake like like a pack of hungry hyenas bringing down a gazelle. However, it appears everyone is dieting.

On Thursday morning FD was her usual grumpy self, growling at me when I tried to get her out of bed for breakfast.  It didn't really matter that it was her birthday. She was furious at being woken up. Once she finally made it downstairs to the kitchen there was no acknowledgement of the huge birthday banner strung across the kitchen door or the dozen pink balloons on the kitchen table, where I had put all her presents. She sat silently opening her presents whilst I hovered beside her wondering if she was going to go into meltdown. When she got to our present I thought I was going to puke with nerves. There was a good chance she would hate it! We had bought her her first proper piece of jewellery - a little diamond heart necklace. She smiled. A little. And then ate some toast. That was it!

We took her out for a birthday meal to a nice restaurant, hoping that she would order something a little bit different to what she usually eats (which isn't very much). However, all she wanted was a cowboy supper!  Sausage beans and chips! She could have had that anywhere. Why on earth was I spending so much money to take us and my mother in law out for dinner when I could have just gone to the local chippy! But, it was her special treat so I didn't cry too much at the £60 bill. During our meal another person in the restaurant was also having a birthday dinner and the waitress came out with a birthday cake whilst everyone sang happy birthday. FD nearly had a heart attack! She thought it was for her. Having a room full of people sing happy birthday is an horrific experience for her. She totally hates it and every year we are warned not to do it! When the singing started I thought she was going to dive under the table. I think she would have only she was getting stuck into a sausage!

After dinner we all went home and got stuck into birthday cake no 1! FD kept sneaking back into the kitchen and picking off bits of icing from the cake. By the time it was bedtime the cake was almost bereft of icing and looked like a sorry excuse for a cake. The dog was stressed because of the pink party balloons and spent all evening barking at the table they were on. I was tempted to give him one to play with but that would have meant I would have had to sit with my fingers in my ears as he tried to eat it and this would inevitably ended with the balloon bursting. The last time this happened the dog almost fainted! And that's no exaggeration!

Birthday cake no2 was eaten the following day in school and there's a little bit left of cake no 3. If I ever see a birthday cake again it'll be too soon. FD is sitting beside me on the sofa proudly wearing her new necklace and counting her birthday money - or trying to. She wanted to buy a pair of Union Jack shorts and a belly top today with the money. You can guess what my answer to that was! Oh the joys of having a teen! Please tell me their fashion sense isn't always going to be so bad!