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.
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.
“It’s been a very bad day Mummy” was the phrase repeated continually yesterday evening after I collected Little Miss H from school.
Standing in the playground I knew it had been. I could tell by her gait, by her facial expression, by the purple bags under her eyes against her too pale skin, by the sadness of her aura. As she slowly walked towards me, scuffing her boots along the salted concrete of the playground, her eyes downcast, her hand up to her mouth chewing her sleeve and her water bottle hanging forlornly from her other hand, I knew we were in for a tricky evening.
I suppressed the urge to say “stop scuffing your boots” (do you know the damage the salt does to the leather?), or “stop chewing your sleeve” and instead just held my arms open for her. She doesn’t usually like public displays of affection especially at school (“It’s against the rules to hug and kiss at school”) but I could see she needed some overt love.
She didn’t come into my arms for a cuddle but she was demure and allowed me to touch her arm.
Her water bottle had been broken that day and she was frightened she’d be in trouble. Mostly though she was just sad. Disproportionately heartbroken actually. You see change is hard for her. Saying good bye to things is really hard. Her stuff is her portable safe space that she attaches so much love and importance to, it keeps her grounded so to have a piece of it broken is like someone throwing a brick through your window. It is devastating for her.
Of course I reassured her that the broken water bottle could be replaced. [No it won’t be the same one, it’ll be a new one but you can choose it. No I can’t fix the old one. Yes I know X person gave it to you for your birthday and yes I know it’s the fourth one that’s broken in however long. Yes I know it matched your pencil case and yes I know it was a ‘Frozen’ one].
With an unexpected burst of energy she was suddenly confrontational. These shifts come out of the blue.
We were due to take Tiny Miss H to Rainbows and this was suddenly proving too much for her.
She was shouting at me that she didn’t want to take her to “stupid rainbows” and it wasn’t “fair”, that she’d “be bored” and why should she have to go with us just because Tiny had an activity…. And so it went on. The real issue is she wanted her safe space, she wanted to hunker down after an exhausting day.
The challenge is enabling Tiny to maintain an ‘ordinary’ life, which includes after school activities, at the same time as supporting Little’s needs. If anyone has the answer on how to get the balance right please let me know.
There isn’t an option, she is eight years old, she was coming with us, so with my arm wrapped tightly around her shoulders we walked towards the car. The deep pressure, once she’s ready to let me touch her, is very reassuring for her and being hypo-sensitive she needs a very tight squeeze. So it was that I held her as firmly as I could with one arm whilst holding Tiny’s hand with my other hand and walking clumsily as if in a sort of three legged race, bags bashing against my shins, all of out of sync, we somehow managed to get to the car!
That’s when she said it “it’s been a very bad day mummy”
Chats in the car are usually the most successful; no expected eye contact, the crowd and melee of the playground has dispersed and we are away from the source of stress.
It turned out that she had been “mobbed” and crowded around at lunchtime in the playground and she didn’t have the ability to extract herself. She didn’t know what to do, what to say, who to go to for help. So stuck in the mob, she drowned. She’s carried that with her all afternoon.
The physical toll it had taken on her was visible to see. She was anxious, stressed and absolutely exhausted.
This on top of the broken water bottle made it “a very bad day”.
Within the 7 minute journey home she had told me it was “a very bad day” about twelve times.
This is echolalia, repeating herself is a form of stimming. It helps her cope with anxiety.
When she has bad days we have a ritual which helps her get from the car to the house and that is a “Mummy squeeze” once in the kitchen – a prolonged super tight cuddle. It physically hurts me she is so strong, but it is what she needs so squeeze away we do. I feel like a tube of toothpaste being squeezed, I can barely breathe, she feels like I’m lightly holding her yet I’m using as much force as I can muster! “It was a very bad day” she mumbles into my chest.
This helps her calm and from there I was able to persuade her that whilst Tiny was at her Rainbow’s Pyjama party we would go and choose her a new water bottle.
Meanwhile she’d also clocked the box of books in the hallway that we inherited a while back from cousins and I’d been storing in the garage. Luckily they proved a timely distraction! “It was a very bad day mummy” she muttered to the books as she rifled through the box.
We successfully deposited Tiny at her pyjama party but with all the distraction I had forgotten her cuddly toy and blanket…cue a mini tantrum from Tiny!
Finally extricating myself from the clutches of the Tiny tirade – I escape outside frazzled and on tenterhooks to persuade Little to walk with me to the butchers before going on to buy her bottle. Reluctant to walk anywhere normally I was braced for the fall out but in response all I got was “It was a really bad day Mummy”. She was so well behaved in the butcher’s that they gave her a fudge. She decided it had been worth walking! “Still a bad day?” with an eyebrow raised, “Mmm” she shrugged, “it’s getting better”.
On to the supermarket to buy her bottle, I managed to persuade her to make a practical and useful choice that would withstand at least some playground action without too much argument. We’d been playful and chatty walking round the supermarket. Things had turned around. I was still on edge keeping it light, keeping her happy. Then we bumped into Tiny’s class teacher who stopped to chat. The transformation from playful and chatty was marked. Little Miss went quiet and couldn’t make eye contact. Out of the context of school, her confidence had melted away and her anxiety kicked in. To a stranger this would appear as ‘shyness’ but it’s different.
Selective mutism is an extreme social anxiety that results in an inability to speak. It is involuntary and more than simple shyness. I’m proud though as she did manage to squeak something to me as the teacher was walking away. Then straight back to being chatty with me once we were safely alone again.
At the till, the cashier told us the amount and Little Miss repeated it in various voices, over and over and over again. Anxiety making her repeat the words. Again, her echolalia. The opposite if you like from selective mutism. Still anxiety driven and not necessarily ‘appropriate interaction’. I could see the anxiety ramping up so a quick distraction technique was needed. Her forte is maths so I made it her job to tell me how much I still owed each time I produced a coin and that busied her brain but in between each amount she still repeated the total amount in a strange voice. The cashier was so patient, smiling and friendly and put absolutely no pressure on her, instead only complimenting her on the maths. The fact there was no queue and no one else around at that moment helped all of us enormously. I didn’t feel stressed or self-conscious, and Little Miss just did her thing.
Once back in the car she asked for water and I didn’t have any. I, almost flippantly, suggested she run back in to buy some. My genuine intention was to buy time whilst I was finishing putting something away in my bag before going back in myself but to my utter astonishment she said “OK”!
So…We talked about what she would do, where she would go, how to choose what she wanted, where she would pay. We talked about the change she’d wait for, the route back to the car and the fact I would not move from the spot I was in. We land marked where I had parked for her to reference it. It was a HUGE amount of information we covered.
She hesitated. She took the coin. She ran. She went round the corner…… I watched and watched and watched, heart hammering and holding my breath until finally there she was running back with a bottle of water in her hand, a smile on her beautiful face, pride in her eyes and flushed cheeks to show for it.
She had gone round the corner to the door of the shop, walked in, turned right to the fridge, chosen still water (not flavoured, not fizzy, just plain , it’s all she drinks), she stood in the queue with two people in front of her and waited calmly (“feeling very nervous mummy” she told me), and when it was her turn the same lady recognised her and helped her through, I’m still not clear whether she actually spoke, but she waited for her change, and ran back to the door, turned left, round the corner and sprinted back to the car “7 spaces down” she told me. Climbed in out of breath, heart hammering (or was that mine?), asked me to open her water and drank it. “I’m so proud of you darling” I told her, “I’m really proud of myself” she said.
SHE DID IT. I smiled with tears streaming down my face as we drove to collect Tiny.
“It was a very bad day mummy” she told me at bedtime, “but it ended well” we said in unison.
The burning question I always have as a mum is how do I know I’ve got it right? How do I know my decision is the right one?
My daughter’s autism manifests in many ways but one of the main ways is anxiety. She has enormous trouble decoding the world, processing the information and coping with change.
She can’t explain herself and self advocate when she is experiencing stress and it’s always with hindsight that the facts come out. While she is experiencing stress she is in survival mode and doesn’t even recognise she is stressed until the stress stops.
This goes some way to explain how she holds it together at school and appears ‘fine’ and sometimes appears better than fine, she’ll be laughing and engaging but still comes home to fall apart.
This week has been so hard for her with staff illness and absence meaning unexpected substitute teachers. Her week is not going to plan, it’s unfamiliar and the level of stress it causes impacts on everything. She came home from school last night subdued and tense. She was pale and clammy and being winter I suspected a bug, I took her temperature and it was normal. She was not unwell, she is just exhausted and drained from the emotional toll of all the changes. The evening was erratic, she was vacillating between tearful and angry, she was refusing school the next day and refused to go to ballet that evening.
I decided to allow her not to go to ballet this time. I usually push her outside of her comfort zones and insist she sticks to her commitments. It was her choice to take up ballet and she’s really good at it, she has just achieved a high merit in her exam and was really (rightly) proud of herself. This term every week she’s tried to get out of going to class and I’ve not caved once. It’s exhausting always battling and cajoling but it’s the right thing to do and furthermore we’ve paid for it, so she’s going! She can never explain why she doesn’t want to go and I can’t get to the bottom of it so, commit she must.
After all the school changes this week however I felt that rather than fight that battle I’d keep her home and let her rest and hopefully increase the chance of her managing school the next day.
All evening her stomach was churning with anxiety about the following day at school. A totally new teacher she has never met is taking them and this is all too new. There are too many unknowns that haven’t been planned, prepared and practised. It’s overwhelming for her.
She woke up this morning claiming illness. It’s really avoidance.
My main aim is to get her to
We have spent a lot of time talking about ‘the little boy who cried wolf’ over the years, we’ve read the book more times than I can count. On an academic level she understands the concept but she is not equipped to manage putting it into practice. So every time she experiences anxiety she claims illness.
She is eight years old. Now is my time to teach her to recognise what her body is telling her. To teach her how to self advocate for that. To teach her that she will be believed when she says she is feeling anxious and that it’s nothing to be ‘embarrassed’ about [her words]. It’s our chance to prove to her that she will be respected for the recognising her feelings and limits. It’s our chance to nurture her, to build her into a strong person who can identify and manage her body’s signals.
We also have to be careful not to be manipulated every time she wants to get out of doing something for any reason other than her crippling anxiety. She’s very bright, she’d make the connection and employ the tactic if she felt it would work.
So, as a mum, how do I know when to push her and when to nurture her?
Mental ill health in young people is on the rise. The amount of pressure our children are under is at an all-time high and is in some cases damaging their psyches. The amount of help available is minimal as the NHS mental health service is at crisis point. Prevention is better than cure, especially when ‘cure’ relies on patchy service availability.
Autistic girls are a particularly vulnerable group and I’m very conscious of that.
Am I harming her or helping her by pushing her out of her comfort zone, by making her go to school?
What is the right answer?
I’m so proud of her, that today, with my and the school’s help she managed to go in. I managed to tread the fine line of ‘coaxing without demanding’ well enough to get her to school and then with their help through the door, they are managing her transition into and through this tricky day.
Are they doing it right? None of us truly know. Are they doing their best? Absolutely.
Am I worried that my daughter is suppressing her anxiety to meet expectations? Yes, very.
Do I feel conflicted about this? Yes, incredibly so.
Suppressing her anxiety is different from coping with it. Suppressing it is quashing it, ignoring it and denying it which leaves it simmering deep down causing damage and delayed presentation. Coping means addressing it, solving it, learning from it and leaving it behind. It’s a fine line to find the balance. How do I know I’m getting it right?
What Autistic Adults have taught me about Parenting my Daughter
As a parent to an 8 year old girl we have our share of frustration, cross words and clashes. We also have a strong bond, a close relationship and enjoy each other’s company. Obviously I love her more than words can say and am beyond proud of her (yeah, yeah – blah, blah, blah!)
I have noticed however that traditional parenting techniques are not always successful with her and whilst being ‘strong willed’ is one of many positive traits she seems to have inherited from me, there is more to it! Another factor that adds a different dynamic to the relationship is that I am Neurotypical and she is autistic. I am conscious that I don’t always respond to her the way she needs.
In an effort to gain some insight into what I could do to improve my parenting of her, I turned to Autistic adults on Facebook and asked ‘what is one thing you wish your parents had known when you were growing up?’ This is what I learnt.
Acknowledging she is Autistic is the first and most powerful message that came across. To accept her for who she really is. “The chances are she already knows she’s different” so giving it a name and recognising it is empowering for her. Acknowledging her for who she is is vital.
Calling it something isn’t enough though – it is about recognising what it means. It is about recognising that;
Something else that came up was “don’t be embarrassed to have a child that is different” – whether we mean to or not I think sometimes as parents we change our approach based on what setting we are in and that is often driven by the fear of what others will think. This exercise has taught me to try not to care what others think! (I will add that I have never been and will never be embarrassed by having a child that is different).
2. To Respect that her struggles are legitimate and real. Respect that;
One woman explained that she wanted her caretakers to understand that she wasn’t “highly strung” as they called her, in fact she was “baffled by life and society itself”. Truly humbling to hear those words when you are neuro-typical, how much we take for granted.
3. To Teach her everything. Not to make assumptions that she will just ‘pick things up’.
4. To be Available to her
5. To continue Learning together as we go. I need to learn at each stage;
Some of this, we as a family already know and do, we are fundamentally on the right track and mindful of doing our best. The rest of this we need to remind ourselves and work harder on. Much harder!
Having neurodiversity in a family is fabulous and challenging in equal measure for all of us. We won’t get it right all of the time but having the intention and motivation to at least try our best has to be good enough. Then we can trust in the fact that ultimately her happiness will come from being her true self.
With thanks to the Autistic Women’s Association and other facebook users who answered the question!
*Autistic Inertia is basically a state of wanting or needing to do something, but being completely unable to do it, almost like a paralysis. (https://nolongerinabox.wordpress.com/2013/03/12/autistic-inertia/)
** trigger warning**
Below is a post from my personal Facebook timeline from two years ago. I posted it not long after we’d moved up here to Scotland.
Those of you who have read past posts may be aware that we have had a struggle getting support since our move to Scotland. That despite a firm diagnosis of Autism some ‘professionals’ doubted Little Miss H’s diagnosis. They even accused me of making it all up. We have been accused of bad parenting and emotional abuse; it was claimed by some that getting her diagnosed was emotionally abusive! (I’ll just leave that there for the moment but I have a separate post in mind about that for another day).
The fact that those accusations happened at all is beyond belief but when I look back at behaviours and manifestations that Little Miss H has endured and suffered through (and still does) it makes my blood boil that there is so little compassion (and support) for such a little girl who deserves to be acknowledged for who she is, specifically as an Autistic little girl.
It breaks my heart that a child would feel such anxiety that she’d pick her skin to the point it bleeds. She has done it since she was very young but it had just dawned on me that what we were dealing with had a name. That name is ‘self-harm’. Obvious with hindsight I know. At the time though it hit me like a sledge hammer, she’d been doing it since she was 2 or 3 and at the time of the post she was 6. The impact this had on me was huge. The realisation that this was a very real aspect of her autism felt overwhelmingly suffocating.
The fact that she felt anything strongly enough to drive her to the point of hurting herself made me feel like I’d let her down. The panic I felt that I hadn’t previously done more to fix it or support her through this behaviour left me feeling substandard. The fact I had ‘allowed’ her to feel so bad broke me inside.
Obviously we had tried many things to help her not pick her skin. I thought it was partly sensory seeking behaviour and we tried many distractions and redirections. I did notice it got worse with anxiety and we tried to deal with the anxiety itself rather than the behaviour. It’s not like we had ignored it, been blind to it or not been pro-active about trying to help her. It’s natural that I felt sad but why did I feel so bad, so guilty?
Part of my reaction was to force myself to acknowledge it out loud. Part of my reaction was to share in case it helped anyone else and part of me wanted to educate others about the generality of this, so often unspoken, part of autism. Part of me though just wanted to say ‘my poor baby is struggling, I find that hard and life isn’t perfect’.
So I shared on my personal time line.
I got so much support from many friends but was criticised by some too for talking about it so publicly. How very British, to suggest I keep it behind closed doors. I felt ashamed that I had posted about it when I was criticised.
I also realised then that Facebook served as more that a social media outlet, it was part of my support network. I had moved to a new place where I didn’t really know anyone, was struggling to get professional support in place for all our needs. Facebook was a world where people ‘got it’, so I resolved not to feel shame and to embrace the reality of our life. I need the support network my ‘invisible’ friends give me. (That’s you lot by the way – thank you!)
More though, telling our story may help someone and if we can make a difference in one person’s life, make one person feel less alone, then it’s all been for something.
So to those that find it triggering I’m truly sorry, please don’t read anymore and come back for the fun stuff elsewhere on my FB page later – hugs and strength to you.
To those who just don’t want to know scroll on by.
For those of you who want to learn, understand and support – the original post is below.
“So Little Miss H is a self harmer. A horrible statement to make as a mother – I feel like I have failed her. Her Autism causes her such anxiety that she hurts herself and makes herself bleed. She is 6. This in itself is sad enough but what breaks my heart is she now seems to realise that it’s not “normal” behaviour so she is now hiding it and lying about it. This further masks the problem that causes her to do this in the first place making it even harder to identify the cause and help her.
It’s no wonder that the average age for diagnosis of Autism in girls is 12, the professionals involved with Little Miss H still can’t always readily see her Autism manifesting itself and if she’s now hiding some of the most overt tell-tale signs how on earth am I going to get her the help she needs?
I feel like I am at the bottom of a hill….every time I try climbing the hill it turns out to be a volcano, erupts, pushes me back down and just grows into a bigger hill….. sometimes life is a bit of struggle here”
I’m thrilled to say that we are managing this aspect really well at the moment – she still picks when anxious but her self-awareness as she matures is helping us find other, healthier coping mechanisms/management strategies and her scars are fading.
We still don’t have support up here but I have learned that I am enough. She needs me, I am here and I always have and will do my best for her.
To my brave, strong, amazing Little Miss, you are safe and I love you. You will never have to walk through life alone. I am so proud of you, every single incy wincy bit of you. Thank you for being you, Mummy xox