Please enjoy my article published in emagazine Crixeo for October which is Sensory Processing Disorder Awareness Month.
Please enjoy my article published in emagazine Crixeo for October which is Sensory Processing Disorder Awareness Month.
We received an email last night telling us that we are about to lose the only autism specific support and resource we have in our area.
Perth Autism Support (http://www.perthautismsupport.org.uk/) is a charity that receives no funding from Perth and Kinross Council or NHS Tayside, yet both consistently and regularly refer all autism families to them. PAS are critical in the lives of families affected by autism in Perth and Kinross and as of today (Friday 18th August 2017), due to no funding, they have no choice but to close all services.
We are now totally unsupported.
Let me be clear, PAS have an excellent management team and staff body who have worked tirelessly for the past five years to provide an unparalleled service to families and professionals in the area.
Their unique blend of experience, expertise, resources/equipment, staff, and compassion make them the first port of call for us all but it also makes them irreplaceable. They know every one of the 650 children/young people that they support. They know their names, faces, quirks, needs, preferences, characters and families. It is no mean feat to earn the trust and love of a family affected by autism and PAS has earnt ours ten times over. They are invaluable to families like ours.
They provide courses, education, advocacy, peer support, support to schools, socialisation, activities, outings, respite, information, equipment, resources, knowledge, hugs, a listening ear and hope.
We moved to Scotland to give the girls a better way of life, but, life without support is not one where they are likely to achieve their full potential.
I don’t mind admitting I am heart broken and scared. Parenting is hard enough, add in additional needs and it gets even harder and lonelier. To lose our only support in this area is a catastrophic blow.
This is not a case of charity mismanagement by bureaucrats, it is quite simply even more sinister. It is a case of a local council shirking their responsibility to adhere to government strategy by not issuing funding where it is required.
I’d hazard a guess that the knock on effect of this closure on other departments and budgets (eg education, health, mental health, social care, housing, and law enforcement), will be exponentially more than the cost of maintaining this vital service. The very definition of a false economy. Perth and Kinross Council, your short sightedness is as callous as it is appalling.
The Scottish government implemented The Scottish Strategy for Autism in 2011 (http://www.autismstrategyscotland.org.uk/) stating that “Autism is a national priority” and that “The Scottish Government will provide strategic leadership on improving the lives of people affected by autism. It will lead on creating a strategic vision for the development of services and support for people with autism, their families and carers.”
This disastrous closure is a failure which exposes The Strategy as nothing more than lip service and propaganda. The Scottish Government and the Convention of Scottish Local Authorities (COSLA) desperately need to re-evaluate the deliverance of The Strategy and councils need to be held to account.
Come on Scotland, you can do better than this.
I sit here with tears streaming down my cheeks wondering whether you’ve noticed that the girls were mean to you today.
I suspect you have, as you’ve needed dark quiet since we got home, you were pale and withdrawn. You went into shutdown.
I could see you desperately trying to be one of them.
I know you don’t know how to join in and I feel like I’ve failed you.
My heart breaks that you’ll never truly relax in social situations, it must be so exhausting for you.
I want to wrap you in my arms and make the world a kinder place.
I sit here with tears streaming down my cheeks, the mean girls excluding you ignites a flame of angry sadness within me.
I feel fiercely protective and want to rewind the week. I watch you try and I see their subtle rejection. It’s sly, almost imperceptible and sophisticated beyond your years.
I pray you don’t notice and don’t feel that searing burn that rejection from a friend brings. The betrayal, the apparent about turn.
But I see you notice something is off. Your friend who you normally giggle with is cold shouldered and aloof. She’s trying to impress an older girl and your sweet naivete isn’t cool enough.
Your confusion is encoded in your eyes and body; a language only I can read.
They are slightly taller and walk at a pace just faster than yours, their step in time, you a few feet away, trailing, rushing trying to keep up.
They whisper about secrets from their sleepover the night before, you know nothing about as you’ve only joined today.
They look to each other before deciding what to do next, your opinion irrelevant in their eyes. They know you’ll fall in and do what they decide.
Their quiet confidence a stark contrast to your permanent internal questioning. Their certainty that they belong, you the outsider, the visitor, the spare wheel.
I’m sorry my darling girl. I feel I’ve failed you. You don’t know how to join in, you don’t know how to be one of them.
We’ve tried to rehearse and practice but you avoid that sort of help from me just now.
I’m powerless to change the inevitable world you’ll face.
I’ve met them throughout my life too; the mean girls, the subtle exclusion that wields power over the one who doesn’t quite ‘get it’.
I wish I could make it easier, I wish I could make it fun.
Instead I say to you – “do ‘you’, be ‘you’ and be proud of who you are.”
Your intentions are pure, your heart is full and your soul is kind.
You are perfect and in the end you will find your tribe.
It won’t be easy and it won’t be quick but whilst you are waiting, be true to you.
Do what you love, be who you are and perfect the best version of you that you can.
It’s ok not to know what others can do naturally. They don’t know what you can do excellently.
My promise to you is that I will never tire of trying to get people to be kind and compassionate.
I can’t promise to make people be different, as human nature is beyond my control, but if I can persuade people to behave differently then at least some good will have come from all of this.
In the meantime darling, I know you will continue to want to be friends with these people and I know they will confuse you. I will try and enlighten that confusion but know I am always here to hug away your sadness or to give you quiet, dark space to decompress.
You are safe and I am the bubble around you that will keep you safe.
To the girls who were mean to my daughter I say;
Being a girl is hard and I know you are sweet inside.
I know you still play and giggle but I see you growing and changing.
You test the waters of growing up, dipping a toe into being a bit older
and playing older games that you make up as you go.
My daughter tried. She can’t keep up, she’s wired differently.
Please be kind, please accept her as she is and please let her go gently when you inevitably move on.
Regular followers know that Little Miss H is autistic. She is a master masker and the way her autism affects her is not always readily visible to others. She internalises. So a child who flaps externalises their anxiety or over-stimulation, Little Miss H has the same reaction to various stimuli but instead of flapping her hand/arm, her stomach muscles do the action instead so her innards clench and squirm, she gets extreme butterflies in her tummy and her heart beats faster, her reaction is private, hidden but no less there and no less real.
I can read her signs and can see the stress usually, but I am her mother and I know her well. Others generally can’t.
She’s a master masker and it can take years to see the real her especially if you only see her occasionally.
We go to appointments and the moment the practitioner appears, her personality changes. Her mood shifts and her behaviour alters. She’s Selective Mute as well, so often she folds in on herself both physically and vocally – her head shrinks down in between her shoulders like a turtle’s neck retracting, her head tilts down and she barely looks up, she positions herself behind me or into my side and goes quiet, her voice changes, both tone and timbre. Sometimes timid, sometimes gruff. She becomes I child I don’t recognise. I’m beginning to get familiar with some aspects of these sides of her and learning ways to interact with her when she is like this but it’s not something we get to practice as it only happens in certain situations which we can’t replicate so it’s not something I am familiar with enough to be the experienced confident mother. I’m practicing on the job if you like! Sometimes she’s compliant but shy, sometimes she’s aggressively resistant, sometimes she’s silent, sometimes she answers questions, sometimes she doesn’t tell the truth as she just says what she thinks they want to hear, sometimes she shouts, sometimes she whispers. Sometimes she’s scared, sometimes she’s angry, sometimes (though rarely) she’s fine!
I never know which way it is going to go, it all depends on so many variables; who else is in the waiting room, time of day of appointment, whether she’s hot, hungry, thirsty, how her day has gone so far, whether the practitioner is a male or female, whether they are warm and welcoming or cool and professional, how they greet us, and so on….. She can sense when someone is analytical rather than open and she feels on edge by that.
It’s not like she shifts into one single other persona that I recognise and am familiar with – her reaction is unpredictable and erratic and as a result I’m working it out as I go, whilst also trying to achieve whatever the appointment is about. I’m testing the waters with my daughter as I go, walking on egg shells trying to prevent a meltdown, trying to focus on getting the important information across, trying to maximise the preciously short appointment time as any future appointments or help depend on this one achieving its aim….
I therefore can appear surprised, distracted and anxious – but that’s because I’m in the room with a stranger and as a mother to that stranger I’m having to make it up as I go along. I’m thrown and I don’t know what is right. If my ‘parenting’ in that moment is unsuccessful it’s because it’s all new to me and I’m feeling around trying to find what works. It doesn’t mean I am a bad parent. If I contradict my daughter it’s because I’m telling the truth and am not being dismissive or neurotic.
So to the practitioner I say;
If I speak to my daughter in a certain way, say certain words, try a certain strategy it’s because it HAS worked before – that’s why I look surprised and flounder when it doesn’t work in front of you.
I feel the full weight of your judgement on me. I’ve been blamed too often for my daughter’s hidden disability so yes I am anxious when familiar territory abandons and fails me.
So please understand that if I appear anxious it’s as a RESULT of my daughter’s erratic behaviour and not as you so readily presume, the cause.
As regular followers know Tiny Miss H suffers from hypermobility and hypotonia. In real terms what this means is she isn’t as physically competent as her peers.
Technically, she has now incredibly reached her major milestones (after years of intense therapy) but she is neither confident nor consistent with her abilities and as a result mainstream activities are often not suitable for her.
We work hard on her physio exercises – we have equipment in the playroom and incorporate therapy into her play all the time. We work hard, make it fun and get results but it doesn’t compare to being out and about taking part, socialising and having the variety of classes that most children access. So we also have a blend of activities outside the home that we attend, to support her development as well as give her some fun.
She takes part in a mainstream ballet class and this works well. At this age it’s fine because she is in a class with children younger than her who are at the same level. As she grows older we will see whether the difference in her ability and stamina impact on her ability to keep up and attain the levels alongside her peers as they progress.
She also takes part in mainstream gymnastics – the exercises are adapted to suit her and she takes breaks in between to fully rest so she is not overdoing it. Again there is a range of abilities and ages so at the moment she is not too conspicuous in her differences to the other children. The classes are very taxing for her, loud, crowded, fast-paced and very hard for her.
However she is beginning to notice her differences and comment on them. They are making her sad. This obviously impacts on her self-esteem and confidence which is already very shaky.
The teachers worked so hard with her to achieve an assisted forward roll in class so she could get her first certificate. She hasn’t been able to do a forward roll since so I think it’s a grey area! The boost to her esteem of being awarded that certificate far outweighs the importance of whether she actually qualifies for it! I think its lenience rather than cheating and I’m OK with that. It works for entry level at age five. But as she gets older and her peers progress at a rate unmatched by Tiny – what will happen to her self-esteem? That’s why boosting it now is so important and I am so grateful to the teachers for their generosity.
Tiny has also been attending a motor co-ordination class which she was referred to by the physiotherapist. It is targeted for children with additional support needs and differing abilities. She loves it. She always goes in enthusiastically and works her hardest. She’s relaxed and herself. The activities vary each week and she can see her own progress. It’s a smaller class than any mainstream classes and as a result Tiny gets the individual, personalised help she needs to complete each activity. She also gets time to take things at her own pace. And she is the same as all the other children who are importantly also her age. She recognises their struggles in her own and she recognises their achievements as much as her own. She’s with her tribe, she belongs. It’s a lovely atmosphere with kind, supportive staff who have been specially trained and who obviously care about all the children.
This is currently the only input we get from physiotherapy. I manage her therapy at home and to be honest am not qualified to know how to progress each exercise or to adapt to target new areas safely. To be quite frank I’m making it up as I go along. I’ve learned loads from watching the professionals and implement it successfully at home but that is no substitute for the years of training and qualifications the experts have. I’m not enough for my daughter to keep progressing.
Sadly until she falls behind significantly we won’t get outside help. There just isn’t the funding. She’s not ‘disabled enough’ I’ve been told. I’ve shot myself in the foot, because I’ve done so much to help her she is now too able to get any help, yet she still needs help… we slip through the net. We are in effect punished for our hard work and proactive early intervention. The lack of external recognition for her hard work is disappointing. Her persistence at her therapy is to be applauded and she deserves recognition for her incredible achievements. For me fire-fighting after we have hit rock bottom isn’t an option. My whole philosophy of parenting is that of ‘early intervention is key’. After she was diagnosed with ‘never likely being able to walk’, with the input and support we used to get we (I) taught her to walk – that didn’t come from nowhere. Without the constant input she will fall behind and cease to thrive. So there is no let up and I’m happy for that but I need support, I need help and I need guidance.
So I was desperately sad to find out today that the motor co-ordination programme is stopping due to lack of funding with immediate effect. Tiny cried when she found out. So did I.
It is not just about her physical development, it is about her emotional development and her mental health. It’s about so much more than being able to stand on one leg with her eyes shut, it’s about being able to stand on her own two feet amongst her peers. It’s about self-worth and it’s about giving these little people an equal chance at achieving their potential.
If you are in a decision making position with regard to funding of any sort please understand the full consequences of your tough decisions. It really matters.