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.
This sums up so beautifully exactly how I feel, my online family are as important as my real life family – thank you all ❣️
I have the privilege of being friends with Mrs Living with Blooming Autism and I hope one day Eliza and Little Miss H will meet, and I know when they do her mummy and I will cry!!
I’ve been alive for 40 years now so it is safe to say I have met a fair few people over the years. It is interesting how the people we meet change our lives and sadly some not always for the better but we learn from the mistakes, the pain and the negativity and we move on. I come from a large yet scattered and disconnected family although I am lucky to have a few amazing members of the family who have been, and always will be, there no matter what. Some do their best to understand about Eliza and autism. I have a select few close friends that know everything about me and my life. I have quite a few what I call ‘passing friends’ that I may not see often, may not chat to often but they are friends. It’s just that lives are so busy and sometimes so…
View original post 786 more words
“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.
Every school-age child with a special educational need (SEN) should have a written plan of support. Every single one. That is my interpretation of the SEN Code of Practice (SEN COP) and I will ex…
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
- Correctly identify what she is feeling
- Correctly describe/label what she is feeling/experiencing
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?