Saturday, 30 June 2012
You are my only child and you are my everything. I wish I could make life easier for you and take away the stress you live with but keep that lovely little personality you have, that wonderful cheeky grin which we only see when you are truely happy and coping well with life at that moment. I wish that I could be a better mum to you and had the money to do everything possible with you, take you on wonderful holidays and buy you all the wonderful things which would make your life easier and a bigger house so we could have a calm down room or area for you. I think you are amazing how you manage to sleep so little and have so much energy but I do hope in time this improves as you do wear your mummy out! I sometimes watch you sleeping, you didnt know that did you but I do, I look at you and I wonder whether you are dreaming, whether in your dreams things are so difficult for you and how much longer you will sleep for. Sometimes I sit next to you and cry, just small silent tears as I dont want to wake you, I cry because I know I could be much more patient with you at times and I wonder whether you love me as much as I love you. I know that is impossible for two reasons, firstly because the amount I love you just can not be replicated and secondly because I know you do not really understand emotions too well so maybe you have difficulty in seeing me as anything other than just mummy. I hope that one day I can share all these things with you darling and you can understand that I might not be perfect but I have tried my best and I always wanted you to have the best I could manage in life.
Dear Stranger in the shop,
I know to you there is a big boy here lying on the floor screaming and that is strange so you are entitled to look but what I would like to tell you is there is a huge difference between looking and staring. Please also remember whether the child in front of you can hear you or not in his meltdown, thats an autistic meltdown not a toddler tantrum there is a huge difference, his mother can. Do you really think that tutting and muttering will change matters? Do you really think that as a parent of this 6 year old who is big for his age I have never tried to maybe ignore him or tried a reward chart? Do you think my son really wants you to stand and tell him to stop being a baby? Do you enjoy watching other people struggle? Maybe you should stand and glance across and instead of commenting that hes naughty or needs some parenting strategy or other please glance across and see a child lying on the floor screaming and think just that its a child lying on the floor screaming, you dont know why, you have probably never met my son before, please just walk by and hold your head up high. Why should I hold my head up high you ask, because you have made me see that day that not everyone stares and maybe even just one person understands that it is rude to stare! I hope that when I next see you and my son is having a meltdown you will just smile and walk on, that would be the best help in the world, much better than any well meaning advice from someone who knows nothing of the difficulties facing my son.
I look forward to that smile
Tired looking lady with the child who rolls on the floor
Dear Friend or family member,
I am sorry that sometimes we have to let you down or cant go places you want us to. I am sorry that sometimes I can not talk to you as much as I would like. I am sorry if sometimes I snap when you try to help by giving me suggestions of how to raise my son. What I wish I could tell you is that although sometimes you see us and Ben copes very well but what you do not see is the difficulties we face afterwards and the following day or two. I know maybe you think we should suffer that so that Ben can enjoy the day out or the visit to see you but what maybe you are forgetting is that an autistic meltdown is due to him struggling. So thinking of it that way do you see why sometimes we as a couple decide that we would be better staying at home and sticking to the routine in which Ben copes with best. I wish things were easier and we could do everything we wanted to but hey life is not always easy. Ben due to his autism likes his routine so maybe some consider us boring or think that we pander to Bens every need but please remember this is our choice and life with him can be extremely challenging and the idea of making it more so sometimes just fills me with dread. Please also try to remember that sometimes I snap when you suggest ideas to me of how to manage Ben better or be a better mum and I do know you do this with the best intentions but I live with Ben day in day out and as a family we have tried various strategies and sometimes when we are having a bad day any suggestion I take as a criticism. I shouldn't snap at you and I should try to listen more and for that I am sorry. I am also so sorry if you look at me and wonder why I never make the effort to dress up or put make up on when I see you. It is not because I don't want to or because I think you are not worth my effort, it is because most of my clothes are torn and if I wear jewelerry it often gets broken and pulled at and make up gets smudged, this is because I rarely dress up through lack of time and motivation so on the occassions I want to this is a big difference to Ben and as you know he doesn't cope well with change. Please please be assured I do not think any less of you I really don't I value you so much and wish I could be the friend or family member that you truely deserve.
lots of love
I just want to be able to tell each and every one of you that I truely appreciate you taking the time to read my blog. Knowing that people care enough to want to understand how things are in our house is truely appreciated, you may not have ever spoke to me or met me, you may know very little about autism or you may also have autism in your family. Whoever you are by reading and sharing my blog you are helping me to do what I aimed to do when I started blogging a few months ago and that was to spread a bit of awareness so that more people could see how autism is such a double edged sword and how it affects us. I also wanted so much for people to understand that when you have met one person with autism you have done just that, met one person with autism, everyone is different and although there are some similarities they are just as different as picking any two people off the street autistic or not. Thankyou so much for reading and following our story and please if you like reading it share it with others so that I can reach more people so people in a similar position know they are not alone and so that people who have no experience at all of autism know a little, but also because it makes me smile when I see how many people have read it, vain I know!!
thanks for reading
p.s. if you want to find me on twitter feel free im @mrs_Jen_mellor pop by and say hi I dont bite!
Friday, 22 June 2012
Tonight after another violent few hours with Ben I find myself questioning again whether things can carry on like this if we dont get any support to help with the violence my lovely boy exhibits. I regularly wonder if my son would be better with someone else as his mum as 99% of the time it is me he targets. However I rightly or wrongly can not bring myself to take that huge step from which there is no going back. I love my son to bits and if there really is no option in the future maybe I will have to accept that I am not good enough to be Bens mum but until I have to I will try my very best and accept the pain, the heartache and the difficulties. Ben is my son, he needs me, how could I ever give up on him when I am his mum his carer his everything.
Every day I am in pain, it hurts when I brush my hair, get dressed, bend, move, basically everything I do is painful. Maybe you know me personally and think this can not be true because of the way I always try to smile and carry on as normal. I do not complain and openly cry, I do not update my every move on facebook or by texting/calling everyone on each of these occassions. Why do I not do this, because I know that if I did then it would not change matters the pain would not be less. The only difference would be that everyone I complained to would see me differently whether as a victim, a moaner, someone who never stops complaining??? Or maybe I would be seen as a liar because who would believe what really goes on here behind closed doors. Ben is six if I were to phone you whoever is reading this and tell you everytime these incidents occurred you would have calls numerous times a day every day. If you heard that day in day out would you really want to know would you really believe me?! Im not sure if I was in your position and hadnt experienced this I would.
So why do I write this blog you must be thinking, why do you tell all to anyone who could read this blog? I do it because by writing this I can get my feelings out and stop the emotional pain building up inside. It doesnt really help with the latter but I must admit it does help a little getting my feelings into words. I hope in time maybe the emotions will stop building up but who knows only time will tell!!
I do not feel it necessary to bore you all with the details of the beating I have endured today as there is another blog post about these incidents in more detail. Needless to say a lot of hitting, hair pulling, punching, spitting, kicking and strangling was involved and I was on the recieving end of it. I am not able to get the help a victim of domestic violence can because it is not my wonderful husband that hurts me its my son.
I do hope people who follow my blog understand a little of how our life is and maybe in time by me sharing this blog with as many people as I can awareness will be raised of the issues some people face with an autistic child with extreme challenging behaviours as I am sure I can not be alone in experiencing violence to this extreme from a child who knows no better.
I do not want sympathy as that wont change our lives but if you can do anything please ask others to read this blog because if this can help just one family in our position to know they are not alone I will have achieved something. Also I hope in sharing this people will understand or accept that little bit more that children like Ben do exist and to not judge before you know the full facts of what happend behind closed doors. So if you can share my blog please do.
Saturday, 16 June 2012
This is something I have read many times and to me really sums up autism and many disabilities and the fact that it is different to what you expected from parenthood but wonderful all the same. When you have read this maybe you will agree with me that Holland is just a different place and that doesnt mean we need to prevent a trip there, cure people who are there, or try to check the flight plan before its in place!
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Friday, 15 June 2012
So firstly the whole idea of a test in pregnancy, I personally think it is unlikely there will ever be a test for autism in pregnancy but as there is a test for downs syndrome. The problem with looking for a test in autism is that until there is a cause or a way of diagnosing it other than ruling out other things and observations etc this is going to be impossible. When I was pregnant it was slightly different to what I believe it is now for tests for problems. I had a scan at 12 weeks to check dates and heartbeat then another scan at 20 weeks to check development such as the development of the spine, heart etc. The only other test available was the amniocentesis for Downs syndrome, this at the time (and I believe still does) carried a risk to the unborn child of miscarriage. Now I know some people will very much disagree with me here and if you do I totally accept that everyones decision is their own but for me this was a "no brainer"! I was not prepared to take that risk when whatever the results I knew that I would have no doubts but to continue with my pregnancy I had already fallen in love with my baby. I personally find it hard when people tell me the news that they have had whatever tests it is that are no available and are "so glad their baby will be normal and not have Downs syndrome" to hear that breaks my heart. I know there are a lot of differences between Downs syndrome and autism however the idea that one test means you have a guarantee of a "normal" child to me is horrible. There are so many potential problems, only one of those is autism. In my eyes and maybe I am biased these people are very naive and if there were tests for every possible disability would they take them all or would they pick and choose?? Where do you draw the line?? Of course any tests in pregnancy could never predict accidents, illnesses etc so the guarantee of a "normal" child will never ever exist. Like I say I know many will disagree with me but to me a child is a blessing and if I was pregnant tomorrow and there was a test for autism, would I take it, the answer is no, without a shadow of a doubt.
So, would I take away Bens autism if I could?? Well this is much harder to answer, I wouldnt want to change him because he in my eyes is just wonderful just the way he is, he is a challenge a lot of the time, he makes life like one long obsticle course. However he is Ben, who would he be without the autism, would he be the same little cheeky child who draws every picture with a trump or bottom on, would he be the little boy who gets excited every morning about waiving to cars while he waits for his school bus, would he be the boy who cuddles me so tight I feel like I can't breathe?? The answer is nobody knows so for that reason I could never give Ben that magic pill if it existed to "cure" him from autism. That said I would love to take away some of the things he does to himself and us because of his autism and other needs of course I would because who wants to see their child screaming in a meltdown because something has distressed them so much their whole body cant cope and goes into a place where he has no control at all. Who want to see their child struggle to do all the things that other children can do, even simple things like a trip to the park are near impossible if there are other children at the park at the same time (something which of course cant be predicted!). Those elements I would love to be able to change but I would change them so that Ben could be Ben and cope just the way he is. He isn't different, he isnt not normal, he is a child, he is 6 years old and he is wonderful, the only difference is he is wired differently, his brain doesnt work the same way as other peoples and that is an invisible issue however this invisible disability becomes visible and very physically disabling when due to his different wiring (or that of another person with autism obviously) he is unable to do things other people can. Sometimes Ben physically cant walk because he is so distressed his brain is in overload and he has a meltdown which is so much more than a toddler tantrum that people often see it as. a meltdown is when a person with autism or another similar disabilities body is so overloaded that it can no longer do anything, this can last for 10 minutes or a few hours, meltdowns can follow one another for a full day. Try telling a parent/friend/teacher who is with a person with autism during these periods that autism is invisible and isnt at all disabling, it may not be a child in a wheelchair but that doesnt mean it isnt a disability and should be viewed as just the same, a child (or adult) who is different, this doesnt mean they are not normal because what is normal anyway, define normal??
So, would you change a child just because they dont fit in with what you consider to be normal, or would you change the world to fit in with every child and adult who is a little different so that differences are embraced not differentiated?? I know which I would choose! There is no test for autism in pregnancy and I really hope there never is, some say that is very selfish and crazy of me but you know what I dont care, the reason I hope there is never a test for autism in pregnancy is that if there is then there stands a chance that a child, or more likely lots of children, will be denied the chance of life because of just a different wiring, a child like my Ben and the idea of someone doing that because of the worry of having a child who is a little different makes me want to cry. Life with Ben is very hard but he is wonderful all the same and he deserves just as much of a chance to live a happy life as anyone else. His view of a happy life may just be a little different from other peoples.
The idea to write this as the subject of tonights blog came from seeing the below quote online
Monday, 11 June 2012
So the half term is over and we survived!! I have arms that could easily be mistaken for a dot to dot puzzle and bags under my eyes that could be mistaken for suitcases they are so big!! However weve done it and we have another six or so weeks of school before the dreaded summer holidays.
If I hear one more person telling me how sad they are to see their kids go back to school and the end of all the fun picnics, days out and enjoying time together I will scream. Why is it that so many people look down their nose at others who cant share that joy as if for some reason that means you love your child less. I can categorically swear that is not the case. I love my son so much I would do anything for him and to make him happy he is my life and my reason for living. Since having him I have found a whole different Jenny that I didnt know existed. A Jenny who will stand up and defend my son whenever needed and sadly this is something I have had to do far more times than I should have to. So just because I am pleased to see my son back at school doesnt mean im a bad mum I am just a tired mum who emotionally and physically can only cope with so much. I feel that admitting this is a sign of strength and honesty to myself not a sign of failure. I just wish other people could see that and not criticise!!
While I am on the subject of peoples comments, I am 31 its years since I left school and have no desire to return to the competitive days of the school playground. Children are wonderful in whatever shape and size and whatever their needs its no competition whos child is the brightest, sportiest, most disabled, cutest or has the most friends. Why do people feel the need for the competition. Yes my child is physically able but will he ever be able to live independantly?? My child might not have lots of friends (or any really if truth be told), but he has achieved something far more precious this week, he spoke on the phone to someone and without prompting asked them a question instead of talking on his own agenda. This may be something other 6 year olds have been doing for years but for Ben it was an achievement I am proud of.
What I have found so heartbreaking recently is my lovely little boy who so wants to have a friend but cant cope with the sharing and social skills needed for a two way friendship is potentially going to always be like this, or for quite some time at any rate. Ben has been asking a lot lately to have someone around to play. As those who have been following my blog will know recently Ben had a boy over for tea and to play. This was the son of his respite carer who is very understanding of Bens needs however he is still a young boy who is a few years older than Ben, much more mature and at the end of the day can only take so much of Bens meltdowns and aggression. I dont blame this lad at all he cant be forced to be friends with someone he doesnt want to be friends with. Its become obvious recently this boy has no desire to come and play or have tea again and i totally understand that. However Ben now has the idea of friends coming to play and has asked every day for the last few weeks when he can have someone to play. I am Bens mum I should be able to make him happy and I cant and this breaks my heart.
When i was a child I played with a girl up the street, siblings, and sometimes my similar age cousins. I went to a kids youth club and was in st johns ambulance, not particularly exciting activities i know but it meant even a shy child like me could meet other kids, make friends, talk about the latest kylie and Jason records and play like any child should. Ben doesnt have any siblings and never will its just not biologically possible (and if one more person who knows this fact tells me i should have another child im liable to loose it with them!!!). We dont have any other kids locally he could get to know and he doesnt cope with clubs etc he needs a quiet simple one to one situation. My friends either have much younger kids, live miles away or have kids who are not lonely like Ben so they dont see why an invite for a playdate means so much for Ben. All Bens classmates have siblings to interact with or family/friends with similar age kids. All I want as his mum is for my son to be happy, to have more than adults for company and for him to love and be loved. I feel an immense failure because I feel as Bens mum I should be able to make everything alright for him but I cant and probably will never be able to. For that I wish I could apologise to my son, for the fact he is lonely and I cant fix that for him, there is no magic medicine, operation or words that will make his life easier or happier and no amount of money will change this. It breaks my heart. So next time you hear me say i hate the school holidays maybe you will understand a bit more why, because it is a lonely time for us as a family but even more so for my son.
I dont want sympathy just understanding, and icecream if youre offering!!!!
Thursday, 7 June 2012
This week is National Volunteering week so I thought I would share a bit on my views of that. Over the years most of the help we have recieved for Ben has been paid for by the government/system such a speech therapy etc. There isnt much in the way of voluntary help that we could get to help us with our struggles with Ben however we did have some help from Homestart with a lovely volunteer called Mary who helped with Ben for an hour or two once a week which was a huge help as at the time Ben was at home all the time as it was before he started nursery and Andy was working so from 6 in the morning until 4/5 at night it was just me and Ben. During that time Ben had no language, was very destructive and only sleeping around 4-6 hours a night. Homestart and Mary were truely a life saver, by having her come weekly it meant I could have an adult to speak to and play with Ben while I put the washing out or tidied up the latest mess created by my little whirlwind!! If anyone reading has not heard of homestart and could spare a few hours a week to help a family it truely is very worthwhile. I hope that one day I can give back and volunteer for them.
We have also had some help from volunteers in the way of little (or not so little) bits of help we have had from places like the National Autistic Society, IPSEA and SOSSEN who offer advice lines and support with education problems. I know nothing of these people and why they volunteer, I do not even know their names but at times those little bits of help and advice have just made a huge difference.
So for National Volunteering Week I want to just say everyone can volunteer to help someone and it doesnt take a saint or someone with lots of spare time to volunteer, every little helps as they say. You are probably reading my blog because you either know me or are interested to know how we cope with such a violent child who requires such supervision and support every day and wonder how I even have time to think about volunteering for anything but you know what I do. I dont do anything too spectacular and it doesnt take much time but I want to give my bit back to society and help people where I can.
I volunteer with postpals charity (www.postpals.co.uk) and send cards, letters and small gifts to seriously and terminally ill children and their siblings to make them smile. Although I find this very hard at times I know that my few words can help brighten up the day of a child who really needs it. It may sound selfish but sometimes I do it because it is a way to take my mind off the life we have at home and the tears I cry for my son and the life he hast got that I wish he did. I know he is not terminally ill and doesnt have the illnesses these children do but in my eyes his life isnt normal and never will be, just for different reasons. Sometimes it is just nice to know other people struggle too. I know that sounds selfish and maybe people will think less of me for saying it but I started out this blog with the intention of being as honest as I can and I intend on carrying on being as truthful as possible. I am the coordinator of the postpals monthly projects scheme and assign volunteers to buy a small gift for a set child each month with the aim of getting all the postpals children assigned to recieve a gift every month within that months theme. Sometimes after a stressful day its the last thing I want to do and I sometimes have days off where I shut myself away and dont do a thing for postpals but then I pick myself up and carry on because I want to do every bit I can for these children in a way I hope if Ben needed it other people would for Ben.
Could you volunteer and help someone somewhere?? If I can be doing ti doing my hectic half term with Ben which I am sure I will be able to write more about in my next blog, then so can you!!
Finally, only 3 more days of half term and I have survived so far, a little worse for wear but still hear and still battling!!! I can survive and I will survive!!
Smile and everyone smiles with you, keep smiling!