I had perceptions of special needs parents before I became one. So strong, so calm.
Genetically programmed to be fairly pragmatic about life, I generally trot along on an even keel with the help of Citalopram and HRT (no I’m not that old, yes it was early).
Apart from having a constant obsession with Pearl’s bowel habits (possibly tmi-let’s just say for her own dignity that chronic constipation is a thing for girls like Pearl and it’s horrible) it’s fair to say our life has rebalanced to a new abnormal, normal.
True, The Glory asks me 100 times a day if her hair is alright, but she is 17.
Also Rab told me he saw a man walking a tortoise on the way to school yesterday, and although I wondered if I was dreaming, I am prepared to believe him. He is on the spectrum and honesty is kind of his thing.
When Rab was out of school for 11 months having meltdowns and suicidal ideation (more of this in a future blog) our abnormal normal was shaken quite badly. We found the right school, he settled in, we picked ourselves, dusted ourselves off and…well started all over again.
During a regular appointment The Orthopaedic Surgeon blithely mentioned “keeping Pearl on her feet for as long as possible”. I didn’t actually realise growth and development may lead to a future decrease in mobility. I was thrown off course but again recalibrated.
Parents and carers of children with physical, medical and learning difficulties are among the most emotionally resilient people I know. Have to be. We live in the moment, we really do not know what tomorrow may bring. I took part in a Study by the local University run by the lovely Dr Katherine Runswick Cole. Investigating how parents of children with additional needs developed emotional resilience in their offspring, it was very interesting. First question, “what helps you as parent maintain a sense of yourself when parenting a child with additional needs?”. Deep thought on my part, “Having my hair cut at Toni & Guy”. Truly. Bless Katherine. As we chatted over coffee later it transpired that she too had a child with additional needs. What did she do to maintain her sense of self? Went to Uni got a degree and followed it with a Doctorate. Hmm. Hidden shallows-that’s me.
Emotional reliance is essential to us as a family and I feel is an absolute prerequisite for children to develop good mental health. Pearl has it in spades-she came with it. The other two, have had to develop it as well.
Thus far frankly, a long preamble about the thing that nearly broke me.
My washing machine.
Pearl drools, constantly. She is doubly incontinent. Hate that phrase. Prefer “working towards continence”. As a result I do a LOT of washing. Three loads a day at least, sometimes six. Care for the Family suggests that bringing up a disabled child costs significantly more than bringing up a ‘typical’ one. In our family that money goes on washing machines. (Oh and the Toni & Guy bill). We average a new one every two years.
Fortunately we have a wonderful local family firm who fix and sell machines. Bob has come out on many an occasion to fix an ailing washer and before now to “just get me any model and plumb it in before this evening please”
Gentle Reader, I can endure bad medical news, I can fight local authorities, I can speak to MPs, I can even leave the house looking like a reasonable approximation of a human being, but remove my washing machine and I am a broken woman. I wish I was joking.
Last week I was working on some admin when the washer started making an odd noise. An error code appeared. I googled and fixed and ran another programme . It worked. Then it didn’t work, then it locked itself with 8kg of wet washing inside. I may have cried. Bob arrived (I have him on speed dial) it worked. Bob left .It stopped working. It carried on glitching for two days and then, as I was about to phone the manufacturer, spontaneously healed itself. Clearly a software issue, said Mr PJ, Bob agreed. I suspect it was possessed.
I began to loose all sense of reason. The feelings I usually bat away “I can’t do this””I’m a rubbish mother/wife/human being”, “I’ll just run away and join the circus” (my back up plan incidentally, along with two friends,we have names and acts already chosen). Feelings which would more reasonably be linked to having two children with individual needs and one sitting AS levels, all became attached to the washing machine. It is ridiculous, I know it’s ridiculous.
Did you know when the ravens leave the Tower of London it will fall down? True Story. In our house when the washing machine breaks down the family crumbles. More accurately I go under and try to drag everyone down with me. I am considering having a plumbed in back up washing machine. We may have to build an extension, but it would be worth it surely?
I remind myself that before the advent of Pearl I had a life, skills, a degree, a Profession for goodness sake.
It has all come down to this. My good mental health depends on good hair and a working washing machine.
Hidden shallows, my friends, hidden shallows.
PS. If I’m alone in this, keep it to yourselves or the next blog will be from the Big Top.