A few notes I wish I could send.....

Its always much easier to write on here how I feel about things and of course to say how I feel but to put them onto paper and send or give them to someone is a whole new matter and on the whole would achieve very little! So here I thought I would write them down to share.

Dear Ben

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.

Love always
Mummy

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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

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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
Jenny xx

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Dear Reader,

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
Jenny

p.s. if you want to find me on twitter feel free im @mrs_Jen_mellor pop by and say hi I dont bite!