What does fine mean anyway?
I watch my eldest Stanley going about his day, thinking about what the future holds for him. I think what will happen to him once me or my husband have passed. I think about who will look after him and if he will be safe and properly cared for. Stanley has autism. He looks 'fine' but he won't be able to care for himself nor live independently so this I think about as well.
I worry if Jamie will be here in the morning. As much as we are a unit. Husband and wife. Together we are not 'fine'. Trying to maintain a marriage is bloody hard work when you have a child with additional needs. We constantly try to make it work. Not because we don't love each other. But because we do. It is a fact that parents of autistic children are under a great deal more stress and consequently spend less time together. Me and my husband have had more than our fair share of stress over the years. The fact we are still together proves we are such a strong couple. But it's still hard work.
I worry for my youngest Buddy and the burden he may feel in caring for his brother, missing out on days out that are cut short because Stanley has had a meltdown or just simply grabs his PECs books requesting "I want home" after 5 minutes of being at the zoo. Then I feel resentment... followed by guilt... which then makes me worry even more. It's a vicious circle of worry and horrible feelings.
But if you were to ask me how I am, or how are the boys? I simply reply "fine".
Only a handful of my family and friends know my inner sadness. How I really feel; that every day is a - forgive me... a battle. Stress, headaches, tears, timelines, rituals and routine. Please don't get me wrong, I am a very optimistic person and enjoy life. Me and my husband make the most of our boys forever trying new things and visiting new destinations. Sometimes good experiences, sometimes horrendous. If you don't try than you never know, right? Still at the end of the day there is that niggling feeling... eating away at me. That we are never really truly settled, that we can never really truly be content. At peace.
Trying to devote time and look after my youngest is often guilt ridden as most of our time is spent caring and worrying over Stanley's needs. And then there's spending time to ourselves as individuals. I never thought that pondering around Tescos counted as 'me time'. Dragging it out as long as possible but in in the back of my head feeling guilty cause every selfish second I'm in the supermarket - day dreaming at oxo cubes is an extra second that my husband is no doubt struggling at home and clock watching till I arrive home.
As parents we will never reveal we are actually very lonely. We are on the outside looking in, at both society and our child, unable to find a way to reach both. We are isolated. Isolated from society due to our caring role. Isolated from our friends and family, turning down invitations to parties, days out. Isolated from our child as we are never truly allowed 'in'.
Stanley cannot tell me about his day, he's non verbal. He seems to be locked inside his own little bubble in his own world and only at times (times of his choosing) mummy and daddy are allowed in. Mostly daddy. Sometimes mummy.
But like I've said. I'm absolutely fine.
Theres the looks and stares when out with our child and we try to make it look like we are not bothered (of course we are). I often think to myself "they do not understand how hard it is for him... For us", how life is for my boy. It hurts. Ive learnt to paint on a smile and carry on. But it still hurts. Another thing... Why do people feel the need to comment or give opinions? I don't mind if I have asked ... But I haven't. People that should know better. People I have never met.
"Oh bless he doesn't look like he has anything wrong with him"
"why don't you try doing this..."
or my personal favourite;
"he will grow out if it".
Idiots. Unless you are directly affected by ASD - a personal or teaching environment. Well you will never know. And it doesn't count that you "know someone with autism" either. Or you have watched 'rain man'. I wish this was something Stanley would "grow out of". My heart gets heavy, beats extra fast and tears prick my eyes. Then I feel anger. I feel like shouting "you live my bloody life for a day!".
Jealousy pangs when we watch other children of a similar age meeting their developmental
milestones. Simple things like lining up to walk into school, going out with friends, enjoying sleep overs, even just cuddling up on the sofa with a duvet and Disney film. Or going for a bike ride round the village. Small things others take for granted.
And holidays abroad? Out of the question. For now anyway... We'll stick to weekends at Butlins.
I love my son dearly, he's my first born and the apple of my eye. I fight for what he needs and speak up for him - as who else will if I don't? That is of course what every parent does. And every child is an individual regardless of disability. But inside I still hurt - physically... mentally... emotionally...
This is life. Our life - it is not a choosing, it was thrust upon us but as any parents do, we get on with it and accept Stanley for who he is. He's our cheeky, clever, determined young man. Eyes like diamonds. Smile like sunshine. Spoilt with love and affection. But.... For those who say they "wouldn't change my child for the world". I would. In a heartbeat. If I could take away the autism ... The sleepless nights... The tears... Confusion. The hopelessness I feel as a mother when I can't even comfort my own crying child and it's been 5 hours later and he's still crying. My depression. Then yeah, I would.
I have a wonderful friend who once told me "God gave you a special baby cause' you are a special mummy". Heartfelt words but I don't feel special. I feel lonely, isolated and utterly worn out.
I may say that everything is "fine" believe me now when I tell you that it's not, nor admit that we worry constantly about our child's future. That we feel sadness that our children might not do the things others do... holidays, driving lessons, marriage, children. And especially worry about how society perceives them. High school. Bullies. My baby boy will more than likely live at home forever. We wouldn't have it any other way. But these feelings we keep buried because we don't want to come across selfish or moany and besides, there's always someone else worse off right?
I wrote this blog because behind every "fine" is a story, a past, a heart and soul who has seen more and experienced more than some people will ever realise. But we carry on because we are fine.