My cheeky little man!!

My cheeky little man!!

Thursday, 31 May 2012

Half term is coming in 10 days will I be smiling or screaming?!?!

So the dreaded half term is looming. One more day of school then 9 days off. We have one day of respite planned about a 5 hour session that day so a bit of a break. Its always a testing time in our house because of the change in routine for Ben and the fact that there are so many hours in a day (in Bens case around 18 hours awake a day). So all those hours and everywhere is so busy it makes it hard to find places to take Ben where he will cope. If you have a "normal" child or think back to your childhood where do you think a child would want to go?? Theme park/ museum/ park/ farm/ zoo/ seaside/ bowling/ cinema?!?! Now imagine you are six and busy places make you feel stressed and all the unpredictable stuff going on makes you want to scream and push your way out of the situation so you can have your own personal space back. So many people see that we take Ben places and then get upset when we turn down their invites to go places and do things. Its hard for other people to understand but when we go places it has to be planned down to every last possible eventuality and as his parents we have to be physically and emotionally prepared for the fall out after a change of routine and the difficulties we face afterwards. So just because one day we can cope with these problems doesnt mean we can another. I wish things were different and that we could do all these things I would love to do with my son but the reality is everything has to be made autism friendly or rather Ben friendly as although he is autistic he isnt the same as an autistic child you know or your friends brothers cousins friend. Autism may be one word but the way it affects every child is so very different and the way it affects any one child on any given day may be very variable to. Autism can be so unpredictable, so hard, and so very heartbreaking as a parent if you are not a parent of a child with autism you can only imagine how the rejection, difficulties and pain affect a parent of an autistic child.
So what do we have planned this half term. Mostly indoor/at home activities and going to quiet places. So while most people dont want a dull day that looks like it might rain at half term or a weekend its perfect for us as my first thought is if it means we can take my lovely boy somewhere which is normally busy so he can enjoy the kind of day out most children take for granted a day of fun stress free! Our plans consist of a water bomb game in the garden, planting seeds, crafts, writing letters, library trip,  jubilee fun day for ben and teddies, chalking the patio, baking, and making a time capsule amongst other things. I can't wait to have a lovely week with him, they might not be the most exciting things to do but Ben will enjoy them and I love to see him happy.
So, this half term may be stressful in some ways but I do know one thing, Ben is growing up and I love him to bits if I can make more memories of good times and try to cope with the bad then thats the best I can do as his mum. I want to be the best mum I can be, I might not always be tolerant when he hurts me but I am loving too and I have all these ideas in my head to try to give Ben the best life I can despite all his difficulties. If people dont understand that we put Ben first then they dont count Ben is my life he cant tell people what he can and cant cope with he relies on me and I am determined to do that to the best of my ability!
Half term starts tomorrow the next week or so of blog posts could go either way wish us luck :-) but my final thought, one that has been with me for years long before I had Ben is a phrase I once heard and is so true.
Happiness is not the absense of problems but the ability to deal with them

Tuesday, 29 May 2012

Why i am so tempted to have my headshaved

I regularly toy with the idea of having all my hair shaved off. Why you ask would any woman choose to shave her hair off. The reason is i am beaten everyday by my son because of his autism i cant find anyway of stopping him and short of wearing hugely padded clothing head to toe including my face im stuffed really. However he also pulls my hair so hard that every day he pulls loads out and my scalp is permanently so sore it hurts every minute of the day and even more when i brush/wash my hair.
So to have it all shaved would save me lots of pain but do i have the guts to do it? I dunno.

Monday, 28 May 2012

A lovely day out with my gorgeous boy

Yesterday we went to meet Horrid Henry and the author of the Horrid Henry books Francesca Simon. Ben had a wonderful time and coped so very well, with lots of prompting he chatted to her and got his book signed. It truely made his day as he understands about authors as he loved books so much he has been learning lots about contents, indexes, page numbers, authors, illustrators etc so that made it extra secial to him that he knew who she was and why she was special as she had written all the books! While we were in Meadowhall we went in a few shops together and Ben coped so very well, it was like having a different child. Then after the trip to meadowhall we were invited to a barbeque and Ben continued to cope really well. I truely was a proud mummy we havent had such a good day with him for such a long time.

Sadly when we got home Ben showed his other side and was very physically aggressive again and showed how doing something out of routine and stressful for him really takes its toll. People see how good he can be and rarely realise that we have a huge nightmare following this as he struggles so much to deal with the different events of the day and how overwhelming he found it. It is times like this when I hate autism so much for what it does to my gorgeous boy.

I couldnt thank Francesca Simon and the staff involved in the book signing event it was pretty well organised and made my little mans day, week, month and year. It truely was a day he will always remember as he loves Horrid Henry so much and was so proud to have met "the real horrid henry!" and "a real author, not a pretend one mummy but a real author who writes real books"!!!!! As you can see on the photos he wore his Horrid Henry T-shirt bought for him by his godmother Julie who he loves so much and thought she was amazing when she bought him the t-shirt last birthday!! He also took his Horrid Henry doll which he got for his birthday also, from his Nana and Grandad, he is such a fan he was so proud to be the only child there with the doll and t-shirt and he looked fab. Look at that smile you can see how much he loved it. That little smile he looks like hes a little angel all the time, if only it was that easy. I hate autism and all the issues Ben has but I love him so much and that lovely smile when we do see it makes everything so worthwhile!

Saturday, 26 May 2012

The ups and downs of the last week

Ben with his face painted as spiderman - a good day!

Well the school photo proof was lovely I can't wait to get my copy. This week we have had good and bad. On the positive side Ben loved his swimming lesson and is slowly improving. We have taken him after school to the local designer outlet and treated him as he was so good and coped so well. As Ben loves maps and is fascinated with all that kind of thing we got him a new world map for his wall and we are putting a little star sticker on each country as he collects a postcard from there!! Ben has enjoyed Bible stories and saying prayers this week and at times almost been "normal" which is heartbreaking as he so wants to do things he cant cope with and have friends to play. He has on one occassion (other than as a young baby) had a friend to play which went well but the problem is he struggles with changes to routine and if a friend has to cancel at the last minute as happened the other day he is inconsolable and takes that upset and anger out on me so we are unsure whether to plan it again or not. Its also hard to know if the child actually cancelled for the reason said or if they didnt want to come. Ben had hit this boy a week before so its likely. Ben wants friends but cant cope with them its heartbreaking as a parent seeing your child so isolated with no siblings or friends to play with outside school. Its one thing I wonder if I will ever get used to.
On the less positive side of things I hate the summer because wearing summery clothes its harder to hide my bruises and bite marks. Its also a struggle as Ben doesnt understand privacy and appropriateness and is always trying to strip me and regularly rips my clothes in the process of trying this. Obviously summery clothes mean that at home and in public he finds this easier. Imagine the feeling of your son screaming at you because hes trying to undress you and every ounce of your strength is taken by trying to protect your dignaty. It breaks my heart and it kills me inside. How do you explain to a child that doesnt understand that yelling in the garden "let me see your nipples mum" is wrong when he is mature enough in other ways to understand some things and he can read pretty well.
Some of the professionals we have talked to about Bens violence have suggested we video tape his behaviour so they can see. Part of me thinks that they just dont believe us about how he is - though hes shown some violence in school and with a portage worker when he was younger. He isnt as severe in his violence at school as he goes to a special needs school with a very routined structured day so there is minimal change to routine and I am not there. I am and always have been the main outlet for my sons violence. Often we cant see it coming as he is very spontaneous and often there appears to be no trigger to his violent bursts. So either we video him all day or we have to be lightening quick which isnt possible. I also am put off videoing him as i feel like its unfair on him as i know he cant help his behaviour and it feels like its wrong to try to catch those things on tape. Hes my baby im not ashamed of him im not wanting a different child. I just want a Ben that doesnt physically and emotionally hurt me. I want my child to say i love you and mean it and not follow it with another beating. I want less bruises and bitemarks. BUT I dont want to loose the boy I am so very proud of and I love him so much.
So please to those who know me in person next time you see me in ripped or scruffy clothes, with bruises or bitemarks, or generally just looking pretty fed up please remember I am trying my best and sometimes its harder than others to paint on that smile and i may have no clothes that i can wear that arent ripped and stand some chance of protecting my modesty etc.
As ive been writing this I've been keeping my fingers crossed that my sore eye doesnt bruise since Ben punched me in it and so far it looks promising I must say. See being overweight does have its plus sides I am sure i bruise less easily than i used to. More cushioning!!!

Saturday, 19 May 2012

School Photo Day

Yesterday it had been school photo day and the proofs Ben brought home were wonderful he truely is a little star! After school we went to the library (normal friday after school routine) and then came home for tea etc. Well then the violence started as usual he went from one side of the sword to the other lovely and adorable to hurting me and hitting me. I love him so so much but will it always be like this?? who knows but I know one thing, I will always love him!

Friday, 18 May 2012

Behind closed doors

Ben is my life, I love him so much but I also find him at times very hard to live with. Most people who know me know that he is violent and I often say this but I think very few people know how extreme his violence can be. I guess I hide it away because in some ways I am almost ashamed to admit what happens when people arent here. It also happens when out and about and when we are in the company of others but not many people know that this happens on as regular a basis as it does.

I know all children can have a bit of a meltdown or tantrum and hit out on occassions. The difference we have is that Bens violence is daily and not always caused by a typical reason like not allowing him something. Ben hits me regularly for what seems to be no reason at all. We constantly try to address all of the problems his autism brings and feel we are good at that and he can be such a happy child for example when he is looking at maps, watching the simpsons (when the adverts aren't on!) and playing on his computer. These are not the times that we find hard, nor are the times when we say no to something and he hits out, this is normal, maybe not all 6 year olds still do this much but Ben is still developmentally delayed in many ways so we understand he will have the typical odd toddler tantrums. Bens violence however is different and heartbreaking.

Imagine being hit, punched and kicked on a daily basis by your child, having all your body sore on a daily basis because of bruises and scratches. Imagine waking up every day and knowing that this will be another day of beatings and pain. Ben is very strong, he doesnt just slap, he punches, kicks, headbutts, bites, scratches, pulls hair and strangles. Ben grabs at every part of my body and pulls at my clothes, I own very few items of clothes that do not have some kind of rip or tear.

If I was to count how many times a day these incidents occur it would be impossible it is continual for most of the day, my only respite really is when he is at school, luckily he goes to a special school and gets the bus to and from school which gives us a reasonable break from him. We also get some respite so he goes out for trips out with a befriender and he enjoys this, some people see this as unnecessary and see us as scroungers for this but try for a minute to imagine a child that does not sleep well and every waking moment he is home he hurts me, then tell me that I shouldnt get some waking time without him! It breaks my heart that we need this help, I would give our benefits and help up in a heartbeat for a "normal" child who didnt hurt me daily.

So now you see a child who can read, is getting better at writing, and has good language doesnt mean he is only mildly autistic, it just means he has developed well in those areas he is still challenging in others, it has been a long time since I left the school playground, I am not in any way trying to say my child is worse than anyone elses or trying to boast about his achievements however I do think autism is a double edged sword the good and the bad. If you have met one child with autism you have done just that, met one child with autism, life behind closed doors can be very different and life isnt always as it seems.

On a positive note behind closed doors chocolate always brightens the day ever so slightly, as does a certain brand of icecream :) The next blog post I promise I will try to make more positive, I have just tried to make these first ones kind of outlining things as they are, the double edged sword isnt always bad, my boy is a little super star and makes me so proud in so many ways and I will never ever stop loving him despite the pain I experience from him.

From diagnosis til today

So, its been four years almost to the day since Bens official paper diagnosis and around four and a half years since his "most likely autism but we have to check out these other possibilities" diagnosis. So much has changed, good and bad, hence the name for my blog. Everyones perception of autism is different and every child with autism is different so unless someone has lived in anothers shoes who are they to judge how hard or easy your life is. I have found over the years this is something I need to keep reminding myself and keep reassuring myself that other peoples opinions are not relevant and they do not live here so do not know everything, they know what they choose to listen to and what I choose to tell them.

Ben has gone from being a non verbal child who was very classically autistic. Ben had no language at all, he was violent, severely delayed in all his skills and essentially like a baby in so many ways. Ben had only recently learnt to walk and was still clumsy and struggling with coordination. The diagnosis procedure involves a portage checklist which looks at a childs development against what it should be and Ben was behind in every area but he was my wonderful son, he was difficult to care for and extremely difficult to take out of the house but I knew I could never stop loving him.

Imagine going shopping and seeing a child who is 4, 5 or 6 and they are throwing themselves on the floor screaming, most peoples initital thoughts are that this is a naughty child and a mum who clearly cant control them, I mean what 6 year old lies on the floor screaming over a simple thing, and what kind of mother isnt embarrassed and acts like this is perfectly normal??? The answer, a mother of a child for whom this is normal, a mother who has adjusted to the stares of strangers, you are not the first person to stare and certainly wont be the last. A child in a wheelchair has a visible disability and people see a child like this and you can see in their eyes that they know the parents may have things hard, do people do that with the child who aged 6 and big for their age in aged 8 clothes is rolling around Tesco's screaming, no they think bad parents. Disabilities are not always visible.

Autism is such a spectrum, many see it as a line from severe autism to mild autism. What about children or adults who are severe in some ways and mild in others. I see autism as a double-edged sword, there is good and bad, severe and mild in everyone who is in some way affected by autism spectrum disorder. Ben is like this, the good is he has great language now, it developed late and he still has a lot of the typical autism difficulties with his social skills which mean he is unable to use his language as well as it may be possible if he had the social skills of a neurotypical 6 year old. Ben is academically very bright he takes in information and in many ways is a typical 6 year old in the work he is able to do, however again his social skills, his lack of imagination and his difficulties in thinking things through, in the same way as a neurotypical child, hold him back, a double-edged sword.

There is one other element of Ben which really does affect him and myself as his mum. Ben is very aggressive and violent, it is not through malace, though sometimes it feels as if it is. If my husband Andy ever treated me in the way my son does it would be over, domestic violence is not acceptable and rightly so, but violence from a child who does not understand what they are doing and can not control themself is accepted, we struggle to get any help for Ben for this, it feels like noone understands.

I love Ben so much, that will never change, he can not control his emotions well and does not cope well with change to his routine or with lack of control. Ben finds it hard to accept when things are not the way he expects and he does not know his own strength. Despite being six and a half Ben is tall and strong for his age he is loving and fun when he is happy but at the other side of the double-edged sword he is strong, violent and does a whole host of things that hurt me inside and out. More about that on my next blog as this is getting rather long!!

The start of the double-edged sword

This is a story/blog type thing I wrote back in August 2008, it really just sums up how I felt at the time and now I have decided to write a blog so although there is a big bit in between after this I will start from more recent events, feelings etc.

My son Ben was a planned baby and very wanted, it had taken almost 2 years to conceive him so when I finally fell pregnant nothing could burst my bubble. I had Hyperemesis Gravidarum so I was really sick my entire pregnancy and lost 4 Stones in weight (luckily I have plenty to loose!). Benjamin Oliver was born on 16th November 2005 after a 5 day slow labour, but still I didn’t care, my perfect baby was here all 9lb 1oz of him. Things went from bad to worse in my relationship and my partner became more violent and controlling, nothing I did was right I had to do all the household jobs and everything for the baby. He worked and played computer games and if Ben dared to cry he would shout and scream that he couldn’t hear the television. Essentially I was a single mum but I had my baby who was perfect in my eyes. He was slow to gain weight and had a heart murmer but I never worried I trusted the doctors they know best.

All sleepless nights, a baby that would not be put down but didn’t care who held him, a partner who wouldn’t help, a family who thought I was coping so didn’t offer support and dirty nappies everywhere started to get me down. Then Christmas day at five and a half weeks old Ben smiled. He was normal, he has smiled at the same time as expected. It was pretty hard to accept though that he had smiled at Grandad and not Mummy but maybe I shouldn't let that get to me.

What will Ben grow up to be, a fireman, a lawyer, a doctor, who knows but I did know he would do something clever. I was determined he would be taught everything he needs I would sing to him every day, read to him, get him educational toys, none of the electric rubbish parents buy to entertain their kids so they don’t have to give them any attention.

At almost 6 months Ben and I moved to my mum’s house as the violence all just got too much when his dad had been hitting my beautiful baby too – he was 2 months old when he first hit him. I had to get him out, protect my baby. Ben should be sitting soon but all the upheaval maybe that’s why he isn’t doing it, the poor little on doesn’t know what’s going on its bound to put him back a little. I lied to friends whose kids were doing it and pretended ben was too, they would never know! Is he sitting yet? Is he crawling yet? Has he started rolling over everywhere? No, no, no what was wrong with my baby? Never mind must be the stress of being at my mums.

Then at 8 months old we moved back to my house after Ben’s dad had left. Ben was sitting up now – see I knew he would do it in his own time he is just a little slow. Is he crawling yet? Does he try to pull himself up? No, not yet but he has been through a lot he will do it in his own time. All of this time Ben never cared who was with him as long as he was not alone.

Then by 11 months still no crawling. What is wrong with him? Maybe he will just walk, so many people have told me this I start to believe it but something just tells me maybe not. I spend all day every day trying to get him to crawl. A few weeks later not long before his first birthday Ben crawled. Then choruses of everyone we knew “see I told you he would” and “what were you worrying for” but I just knew he wasn’t just lazy it was something else. Still no babbling though maybe that will come soon now too? Ben’s health visitor was so reassuring “they all do it in their own time try not to worry he will be fine”.

I started back at work when Ben was just over a year old, he went into a nursery but had to stay in the baby room “we only move them up when they can walk”. All the others were much smaller than my big boy was but they assured me he would be walking soon enough. The stress of being a single mum was getting to me, I had a new partner but only saw him at weekends. I wanted a baby to be proud of, to laugh with other mums about what he was saying, doing etc but no I got Ben. Why did he hate me? Why did he not want to fit in? He started saying ca repetitively so I stopped worrying he would talk soon why am I panicking. Ben also started to bang his head on the floor repetitively he kept getting bumps on his forehead. I left work and my partner moved in, I didn’t want my baby in nursery anymore, he wasn’t progressing there he would be better at home with me I would sing to him, read to him and we would catch him up soon enough if I tried hard enough. Before we knew it ben was almost 18 months and nothing had changed he didn’t have the normal 6-20 words so I persuaded the very reluctant health visitr to refer him to speech therapy. The speech therapist asked him lots of questions and basically said eh would get there in his own time, a speech therapist would come to help us learn to talk and sing to him as that would help if we did it “properly”. I asked could it be autism – I only knew a little about it but this was my biggest fear. Her response was “no I’m sure its not don’t worry about anything like that all kids get their speech at different rates he will catch up”. Well she is the professional I was wrong silly me worrying too much over nothing. I went to the doctors to get my anti depressants increased I was obviously just worrying and stressing about nothing.

At 20 months Ben spoke, he could say duck, car biscuit, night night, banana, not clearly but it was coming. They were all right I was worrying about nothing he was just a bit slow. Why wouldn’t he say mummy or no though? Maybe I am just being paranoid he is only 1 plenty of time yet. Then finally ben was trying to walk, my baby was normal why did I worry, how stupid did I feel now! Then it all started to go wrong. Ben’s speech disappeared completely, Ben changed as a child, wasn’t interested in anything anymore. Maybe he never was and I just kidded myself to think he was normal? I got referred back to speech therapy, put on a list so getting somewhere or so I thought. Eventually we saw a speech therapist who told me he was fine, nothing wrong. Obviously its all me getting depressed again I just see these things that aren’t there and worry over nothing.

Then I went to a Sure Start group for children with additional needs. In my mind I only went to reassure myself Ben was normal, looking back I feel so nasty to have gone with that attitude but that’s how I felt at the time. They were normal children – well what I knew as normal, they were like Ben, should they not have been there? Were they normal and I was confused about the group? Or was Ben different and they were too but they looked normal? I got talking to one fo the mums, here sons were like Ben but they were autistic. Is Ben autistic? Is their diagnosis wrong and they are just not as quick as other kids to develop?

I told my friends and family I think Ben might be autistic, “don’t be daft”, “he looks ok to me”, “he is just slow to develop”, “don’t worry” and my **** didn’t speak for ages he was too busy playing but he’s fine”. Was I wrong? Were they wrong? What exactly is autism? Is it just a naughty child whose parents have no control? Should I try harder with Ben? Should I go back to the doctor about my antidepressants?
We were referred to the paediatrician for Ben to be assessed so I guess I wasn’t the only one who thought something could be wrong. The staff at the sure start centre told me he was just naughty though and he was normal. Who is right a mum who this is their first child or someone who works with children everyday?

The paediatrician suspected autism and said this is most likely but wanted to rule out brain damage form his abuse as a baby. Had his dad caused all of this and then disappeared and never had to deal with the consequences? It was my fault I didn’t protect him well enough, I am a bad mum, should I phone social services and report myself? Ben had assessments, scans, and blood tests. We had to wait for results, can’t they fast track them? I need to know now not in months to come!

Then in May 2008 the answer came Ben is autistic. But with an answer there should be a solution surely? No solution, no answers just one word and referred for more support and lots of questions no one can answer. We live each day and night hoping things will improve but they feel like they are getting worse, at least I know I am not the only one living a life like this and I know it must be harder for Ben in a world he does not understand unable to talk. I still don’t have the answers, what will Ben become when he grows up? Will he need to live at home as an adult as he needs the support? Will he ever speak? Did I do something wrong to make him autistic? Am I a good mum? Could someone else do better? Should I try to find a better mum for him? Why me?