I was only going to use this blog as a SEN information blog and apart from when my experiences warranted me mentioning my family, I was not going to blog specifically about them. I must stress that I have no problem with people who do. I admire them for openly and honestly sharing difficult life experiences either about themselves or their family. It helps many people to know that they are not alone in what they are going through and blogs often alleviate the isolation that accompany difficult times.
I digress… With the launch of Learning Disability Week 2013 by Mencap, which ties in with the subject of SEN, I wanted to say a little bit about my superheroes, who are, as you can probably guess, my family and one specific friend. No pictures of them I’m afraid but I am welling up at the thought of what I am about to say so, hopefully, words will be enough.
My Mum - She has been there for me. The boys’ dad rarely was and she filled his shoes. She helped me take the boys to theme parks, normal parks, swimming (even though, like me and my two sons with autism, she hates getting her face wet and swimming in general), water parks, adventure playgrounds, ball pits, museums, zoos, Thomas the Tank days out… you mention it, she helped me take the children there year after year after year. Even when the meltdowns started, she stoically carried on until I called time on the outings because no-one was coping with them. She has looked after them for me when I was in hospital having each baby (apart from DS3 but only because she was then having daily radiation treatments for breast cancer) and the two times I was rushed to hospital with the same mystery illness. She has had them at her house so I could have an occasional night off and she has looked after them here or at her house when I have gone out to let my hair down, even for long weekends and half of my honeymoon! Just this weekend I found a toy pumpkin that she made with DS1 many moons ago. It reminded me how, whenever we went to visit at one stage, she helped the boys who were old enough make something on the sewing machine, usually cuddly toys she had prepared earlier! I had forgotten all about that until I had to explain to DH where the pumpkin had come from. As the big outings stopped, she took the boys one or two at a time to London – on the London Eye, tourist buses, Natural History Museum, Science Museum, Victoria & Albert Museum and so forth. Without her my boys would not have done any of these things and despite the meltdowns that they sometimes brought on, their lives would have been lesser for it. More recently she paid for the EP assessment of DS4, without which I would not have won my tribunal and DS4 would be going to mainstream secondary school instead of the lovely school that is now named on his statement. She did this without a quibble and knowing that I may never be able to pay it back… at least not for a very long time. Even though she has now passed the baton onto DH she still does everything she can for us. Thank you Mum.
My Dad - my dad moved to the coast when my parents divorced. He lives in a studio type apartment which is probably the size of my front room or maybe a bit bigger. Despite the size of this and his self aspie dx he had me and the boys to holiday at his nearly every year until I met DH. It sometimes wasn’t easy as everyone’s routine was disrupted, with all the problems this brings for those on the autistic spectrum. We often had to leave a night or two earlier than planned because people weren’t coping but staying with Dad gave us the flexibility to be able to do this. In fact I don’t think we could have stayed anywhere else. But as it was, we had holidays on a lovely harbour beach which was safer than other long stretches of beach. We had rocks to explore and the comfort of every holiday being the same. My boys were introduced to having coke (not DS4 who hates fizzy drinks!) and crisps at the pub as a treat and learnt how to behave there. My dad is a big enough person to have learnt more about himself through my boys and I think, has accepted himself more and found some peace knowing that he is like his grandsons, daughter and 1:80 other people in the UK. He has never treated the boys like children particularly and they respect him and love him for this. DS2 especially loves the fact that he could be like Grandad (indeed, it is only because I said that Grandad may also be like him that he begrudgingly accepted his diagnosis of autism) and could if he wanted, ask him all the questions that I don’t have the answer to. Even when we holidayed near Dad last year, so that we could see him without being on top of him, all the boys wanted to do was go to their usual places and see Grandad. Thank you Dad.
My BFF – words fail me here. She is my rock. My heroine. My guide. My mentor. My guardian angel. She has gone through the same as me and more and has always been there for me. She guided me through the separation from my boys’ dad and without her insight and advice at that time I would be in a sorrier place now, if I was here at all! She has saved me from myself more times than I can remember, even when / especially when I haven’t asked her and it’s only in retrospect that I have understood why she did what she did and could thank her. She reminds me of karma when I want to go for someone’s throat and she is always right about that… it really works! She has made me belly laugh when I’m down and made me go to the doctors when things got too much. We are soul mates, finish each others’ sentences and understand each other when our words don’t come out right. We share our children’s quirks and openly laugh about them. I love her dearly and only hope I am as good a friend to her as she is to me.
DH – what can I say? He met me, fell in love with me and accepts my sons for what and who they are. He even married me and took on my sons as if they were his own because they are a part of me. His touch on my forehead takes away my stress, his hugs are like safety from the storm and he gets me. He makes me laugh like a giggly girl. The most heroic thing DH does is that he says sorry when he’s wrong. Sometimes even when he’s not but he knows “sorry” will make it right. He is my love and I’m glad I went through the wrong ‘uns because it means I can totally treasure him for the knight in shining armour he is.
DS2 – the one who taught me about meltdowns!! He is one of the most determined (yes that includes stubborn too…) people I have ever met. We have struggled. We have gone head to head (never works but still happens!) He got himself through primary school by sheer teeth gritting determination in spite of the help he received not because of it. When he was excluded in his last three weeks of primary school he was beside himself at first but when I refused to send him back his relief was tangible and we had the most treasured three weeks together that I can remember. His sense of humour, when he gets it right, is so dry sometimes I have to do a double take that it is him who has said it. He used to want to be like everyone else and studied people and mimicked people to try and fit in. However, now he has accepted himself for who he is. He has found his niche and that is he wants to study, do well in his exams and go to Oxford University. You know, with his determination (stubbornness…) I do believe he can. My pride in this hero, who has pulled himself up by his own bootstraps through sheer will and determination, knows no bounds.
DS3 – my most quirky NT! Poor DS3 stuck between his two autie brothers! A middle child and then some… He can kick off like nobody’s business. His world falls apart when his routines or plans change (sound familiar??) and I can see myself in him so much that he is like a mini-me at times. But underneath all of this he has the biggest, softest heart. He is the most caring, emotional superhero I have ever met and his superhero loyalty is limitless. He is a bit of a charmer too – “You only look 30 Mum”….
DS4 – where do I start??? This superhero is like a dynamo. He never switches off. His imagination is bubbling all the time. He brings joy wherever he goes (unless it’s near his brothers!) He gives and asks for the biggest squeezes and always tells me how much he loves me, even if I have just said, “WHAT???” after he has called my name for the nth time. His directness and honesty is his secret superpower in disarming you and making you see things totally differently, usually his way! His vocabulary is immense but he doesn’t yet understand everything he says or hears. Again a disarming superpower. His obsessions carve out a meaning to his life and he is expert at cajoling for things he obsessively wants. He is a superhero, he embodies superhero-ness by his very nature. He even has a cape or two…
You may have noticed DS1 is missing from this list. This is not because he is not on it. It is because I am saving the best for last. (Apologies everyone else…)
DS1 – my rock. When the boys’ dad left he became the man of the house. He was 10. I didn’t want him to or ask him to but he naturally assumed the mantle. He gives respect where it is due and witholds it when it is not. He is strong: physically, emotionally and psychologically. To watch him with DS4 melts my heart, to see this strong nearly-a-man being so gentle and understanding. He brings DS2 & DS3 in line in a male way that I could never do and they look up to him. They couldn’t have a better role model. When I had a phone call from school complaining about his attitude to some teachers, I told them how he was at home and how proud I was of him, that they should look at the bigger picture of his difficult life with 3 younger brothers, two of whom being on the spectrum and they never phoned me again. His latest superhero action is to write a list of things that need doing around the house (it’s quite long) and he is going to try to do them all… Proud doesn’t encompass how I feel.