DIY no sew weighted lap cushion

Well, it’s been a long week. T has been off school unwell at the beginning of the week which is always tiring. She gets very anxious when she’s unwell, and needs a lot of tlc day and night. She is now back at school, and improving but it has prompted me to look for new ideas to help bring calm!

One that I came across sounded potentially so multi-taskingly helpful that I thought I’d give it a go. Weighted blankets is something we’ve thought about for T but never quite got there. They are pricey or appear to be fiddly and time consuming to DIY (or at least they have become those feelings whenever I think about trying!) But yesterday I came across a no-sew weighted lap blanket/cushion which may give us the chance to find out whether T responds well to having a weighted blanket in the first place before I try and attempt to make one. And into the bargain, it uses mermaid fabric so it can be calmingly drawn and written into whilst using it.

It just so happens I have a mermaid fabric cushion cover waiting in a drawer for the right crafty moment so I have got it out this morning and got going.

The tutorial that inspired me can be found over on ‘lemon lime adventures’.

As is my usual crafting approach I raided the cupboards and used what I had. But I’m pleased with the initial result and am looking forward to T trying it out when she gets back. Friday night is movie night for us so it’s the perfect chance to give it a go. I’ll let you know how it goes.

IMG_20190208_093731467

  • Raided the cupboards and found dried split peas, and little stones. Ziplock bags and of course the cushion cover.
  • Simply divided up the stones and peas, laid them across an old micro fibre towel and taped them down with box tape/parcel tape. Then folded the other half of the towel over and taped across to hold it all together.

IMG_20190208_095112991

  • A little bit of careful jiggling and wriggling into the cushion cover, and zipped it shut!
  • Now enjoy!

IMG_20190208_100651740

 

Advertisements

Snowdrop moments: unexpected breakthroughs

2016-02-22 16.23.51

Love, love, love snowdrops don’t you. Little nuggets of resilience and pioneering spirit. Humble simple beauty when it’s least expected and looked for, when everything is cold & hard, and just when it’s needed to lift the spirits and urge us forward. I carefully divided and replanted some clumps of bulbs last autumn, and am enjoying watching them fight their way into flower in their new homes around the garden. For me they are a reminder of the fact that God is in the business of making everything new – and that begins now, in the unexpected; against the odds; tenacious; fragile and simple yet miraculously powerful breakthroughs that God allows to spring up ready to be found and rejoiced in. They remind me to rejoice with God in the small significant ‘newnesses’ that happen in our family life.

img_20190113_155102854

A sewing birthday party attended despite huge anxiety and thoroughly enjoyed. Huge sense of achievement. The photo shows fluffy the bear, designed and sewed by T alongside a great group of girls from her class.

img_20190121_171907218

 

T had homework this week to cook a healthy tea for her family!

Andrew helped, I provided emotional support! And T cooked chicken pasta. Exhausting.

Hidden in this amazing event was an equally amazing moment as T sat with B & A and a friend at the kitchen table and all ate some – a new recipe tried by everyone – don’t try & tell me God doesn’t break into our everyday, that’s definitely miraculous.

 

This morning A allowed T to sit in his room, and they peacefully ate breakfast alongside each other. (I know!!!)

College work, a very new way of presenting and handing in, is being completed.

We have had a visit from a good friend, who helps us in ways she probably doesn’t realize. And, in the same few days another friend came round so that Andrew & I could go out for a meal. I know, sounds so ordinary yet never ever taken for granted.

img_20190122_102331_045I am pressing on with the editing of another book – the one that sparked all the others – about time I focused on it again and got it ready to share with you, think you’re going to love it.

Last week I also travelled (not far, but even so, out of my little comfort zone) to help deliver a disability (or diffability as I like to think of it) awareness training session for the diocese and had the chance to share a bit about ‘sense of space’, our accessible worship at church and our experience. And we juggled school pick ups successfully between us.

All of these small, significant, moments – snowdrop moments if you like – can be moments to recognize God is at work in our midst. He is drawing us forward, revealing his faithfulness, his humour, his joy in who he has created each of us to be; leading us into his life – his overflowing, never ending aliveness that he pours into our lives. Tough circumstances, worries, lack of sleep, diffability; none of it stops God in his busyness of recreating. His aliveness is powerful enough to break through the hardest, coldest places of our lives in ways unexpected; against the odds; tenacious; fragile yet powerful.

 

 

Sugar free January??? No chance

Everything on my news feeds at the moment is about clean eating, getting fit, ‘new year new you’, sugar free, dry January. I read them with my chocolate bar open next to me, and take them with a pinch of salt! There’s no chance, not for me this year! With sleep still a constant battle, and worries every which way I turn these types of resolutions are a battle I can’t take on (even if I wanted to – and actually I don’t, chocolate & I are good friends!). I haven’t made any resolutions at all really. I guess I’m in survival mode most of the time, taking each day (or on a bad day, each 5 mins) at a time.

If I did sit here for a moment (my first moment like this in a while, Christmas has been (mostly) wonderfully full on as usual) with time to reflect and dream what would my resolutions be I wonder?

There are many things I would like to improve in family life, or sort out in the home. Yes my diet (and over reliance on chocolate) does need an overhaul – despite Andrew’s best efforts to get me eating good, home cooked, balanced meals in the evenings. And my hair & skin need a fairy godmother! But are these the things I want to resolve to focus on this year? Probably not.

I would love to remember more than I forget that God’s presence is with me – all the time, in every minute of the day & night. I believe he’s with me; Emmanuel – God dwelling with us; yet somehow in the middle of family life’s complicated and stressful day to day it’s something that seems to slip my mind and I don’t want it to! I believe his presence is with me and that I don’t have to work hard, or shout loudly to conjure it up. It’s his promise to me as someone who trusts and loves him. He’s here, right here, closer to me than the breath I take in. His loving, under-girding, kind, powerful, gentle, wise, leading presence is here ready to help and save, comfort and restore.

Oh yes, people of Zion, citizens of Jerusalem, your time of tears is over. Cry for help and you’ll find it’s grace and more grace. The moment he hears, he’ll answer. Just as the Master kept you alive during the hard times, he’ll keep your teacher alive and present among you. Your teacher will be right there, local and on the job, urging you on whenever you wander left or right: “This is the right road. Walk down this road.” (Isaiah 30:21 The Message)

I’m an open book to you;
even from a distance, you know what I’m thinking.
You know when I leave and when I get back;
I’m never out of your sight.
You know everything I’m going to say
before I start the first sentence.
I look behind me and you’re there,
then up ahead and you’re there, too—
your reassuring presence, coming and going.
This is too much, too wonderful—
I can’t take it all in! (Psalm 139:1-6 The Message)

“I’m telling you these things while I’m still living with you. The Friend, the Holy Spirit whom the Father will send at my request, will make everything plain to you. He will remind you of all the things I have told you. I’m leaving you well and whole. That’s my parting gift to you. Peace. I don’t leave you the way you’re used to being left—feeling abandoned, bereft. So don’t be upset. Don’t be distraught. (John 14:26 The Message)

Maybe I’ll draw out these verses and put them in places I will see as I go about my everyday here in this house.

I need reminding, I’ve been far too good at forgetting, I am not alone.

img_20190108_102203491_hdr.jpg

Looking at it it seems a rather simple resolution. But I have a feeling that if I were to succeed it could change pretty much everything else – my perspective, my responses, my feelings. So my prayer for myself for 2019 is simply this, ‘my Father God, open my eyes and heart up to your presence even more as we walk through each day of this new year together…’

 

Let me take the mask off

IMG_20181208_094513937

Masking – the art of camouflage that many (most female) autists spend a lifetime perfecting; the skilled, intentional blending into social surroundings, to become just like those around in order to become invisible & not looked at.

Both my girls are experts at masking. It’s a coping strategy they use in a number of social contexts, including school. But not at home, when it’s just us the masks come off and my girls can rest awhile (once all the pent up emotion, strain, and anxiety has exploded of course).

…”most of our participants are experts in pretending not to have autism — a phenomenon sometimes called ‘camouflaging.’ They said they wear a ‘mask’ or adopt a persona that is carefully constructed from copying the behavior of popular peers or fictional characters, or by studying psychology books.” (William Mandy & Robyn Steward)

The art of masking is pretty amazing really, and my girls achieve so much, and push themselves through so much because they do it so well. Both are fascinated by people, (as well as being bemused and overwhelmed, and anxious about them), and do a lot of people watching and deciphering. Both want to fit in and to build friendships among their peers. Neither like to feel singled out or looked at. Camouflage uses the skills of mimicry and echolalia, planning ahead and practicing phrases and gestures, and facial expressions – often in front of the mirror. It also involves concentrating on surpressing gestures and behaviours that have been noted to stand out or be unacceptable or misunderstood, like stimming for example.

“Most … said they found the effort of passing as neurotypical to be exhausting and disorienting, and many thought it contributed to their delayed diagnosis. There are no tests for camouflaging, and this is a major barrier to clinicians and researchers understanding and helping women on the spectrum.” (William Mandy & Robyn Steward)

As well as surpressing behaviours there is also an element of compensation going on in masking autism too. Learning ways of managing to maintain eye contact for example despite the pain it causes. Or finding out facts about a peer groups interests and role playing being into it too. It all takes constant effort.

“Being both autistic and an autism researcher can be a bit of a juggling act: it feels like wearing 2 very different hats sometimes,” Belcher told Neurology Advisor.

“The most important thing I’d like to convey is that ASD is not just a collection of impairments; it includes lots of strengths and abilities as well, which need to also be taken into account,” she said. At the same time, Belcher drew attention to the dangers of studying ASD as a “disease” and incorrectly regarding the spectrum as moving from “mild” to “severe.”

“A very high functioning woman, for example, who has learnt to camouflage her autism, may be rated by professionals as having very mild autism, when in fact she suffers a great deal with mental health problems as a result of constantly trying to appear ‘normal,’ ” Belcher told said. “There’s a lot more people with autism than we know of, and a lot of those people will be having a very difficult time. Professionals need to be more sensitive in their diagnosis of autism, and move away from these very black and white tick boxes of what autism is.” (Hannah Belcher)

Add into the mix the ongoing sensory demands of the day, and the fact that practiced phrases and gestures cannot guarantee the outcome you have seen happen before – because people don’t behave in a text book kind of way – and the picture is one that so easily becomes frustrating, overwhelming, confusing and exhausting. Masking is so very amazing, so very useful but it comes at a huge cost. In the general population it is estimated that 1 in 4 of us have significant mental health problems at some point, within the autistic community it is estimated at 80%. Anxiety disorders, depression, suicidal thoughts are not intrinsic to autism itself yet are so often present, in part as a cost of trying to blend into a world made for a different way of thinking and behaving. They are a cost of trying to live in a world which seems far less accepting of difference than it declares itself to be. They are also a cost of being perceived as not needing support or accommodations in contexts where autism is being masked.

Despite not wanting to stand out, there is a basic need to be ‘seen’ and understood, to be accepted and loved for our true selves. There is a need for safe people and places where the mask can be put down.

 

 

 

glossary of a diagnosis

It seems a lifetime ago that we began the long search for understanding – the pathways to a diagnosis. Ultimately as parents we long to deeply bond with and get to know our children, these wonderful, tiny, unique gifts. We long to understand so we can share life together, and provide well for their needs and watch them thrive and grow. Looking for a diagnosis for us was not a desire for a label, or to find the right ‘box’ – it was to understand and from that understanding to love the best we can, support the best we can, and protect the best we can.

There have been so many professions and medical terms that we have encountered in the process, it has been a little bewildering at times and definitely overwhelming sometimes. But I have definitely learnt a lot: here’s a taste of some of the phrases we have had to find out about!

  • ADOS – a set of observational assessments used to diagnose autism.
  • Autism – Also known as Autism Spectrum Condition, and Autism Spectrum Disorder. A condition with distinct areas of difference (neuro-divergence) from the norm (neuro-typical) in terms of thinking and imagination, social interaction and communication – in our house we refer to these differences as superpowers!

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways.

These differences, along with differences in diagnostic approach, have resulted in a variety of terms being used to diagnose autistic people. Terms that have been used include autism, autism spectrum disorder (ASD), autism spectrum condition (ASC), atypical autism, classic autism, Kanner autism, pervasive developmental disorder (PDD), high-functioning autism (HFA), Asperger syndrome and pathological demand avoidance (PDA). (from the national autistic society)

  • Alexithymia – inability to identify and describe your own emotions.
  • Dermatillomania – compulsive picking of skin.
  • DISCO – a lengthy questionnaire based diagnostic assessment.
  • Echolalia – a very precise copying of a word or phrase, from TV or a person. Sometimes for self-calming like stimming, sometimes for communication.
  • EHCP – Education & Health Care Plan, fairly new in the UK it’s aim is to be a joined up thinking, legal document of a child’s needs and support needed as they go through the education system.
  • Hypermobility – Hypermobile joints, but also for some hypermobile or stretchy skin, and joining tissues throughout the body with huge affects on health. Ehlers Danlos has found this is also a spectrum condition with sub-diagnostic terms. (Find out more about EDS here.)

20171020_125207

 

 

 

  • IEP – an Independent Education Plan, a system of setting goals and reviewing in a positive cycle with school.
  • Lanugo – fine downy hair growing on back or face when the body is in starvation mode. Not a term I want to have found out about really.
  • Meltdown – different from temper tantrums, connected to sensory information overload. I wrote more about it here.
  • One sided verbosity – not taking turns in conversation; rather talking at someone, using a lot of words.
  • …RefusalSchool Refusal; absolute paralysing panic about going to and being at school resulting in extreme avoidant behaviour (hiding, throwing, kicking, biting, running away). It can mean it is impossible to keep going to school for some. Food Refusal; panic about eating resulting in extreme avoidant behaviour. Can be connected to sensory hypersensitivity, neophobia (fear of new – normal phase in early childhood), and cognitive rigidity (connected to context, utensils, brand, look of the food). It means a restricted diet, and heaps of anxiety around food.
  • Selective mutism – I have written about this here; an inability to speak due to panic.
  • SEND – Special Educational Needs and Disabilities – a term used in schools where there will be a list of students identified as having SEND, and a SENCO (Special Educational Needs Coordinator) whose job is to coordinate support.
  • Sensory Processing – talking about the way our brain & body works to process the information it receives through the senses (taste, smell, sight, sounds, touch, knowing where our body is, understanding what the inside of our body is needing/doing) Just as each of us experiences pain differently, all the senses can be experienced differently. Sometimes someone can be hypersensitive to a particular type of sensory information, and/or hypo sensitive (not able to take in enough sensory feedback in a particular area).

20161026_083919

  • Sleep Hygiene – a term used to mean the good habits and routines that help our bodies get a good and easy night’s sleep. You know, no screens near to bedtime, ‘bath, story, bed’, have a calming bedroom, lights out etc. You can do courses in this too – yes been there done that!
  • Slow processing – talking about the speed your brain can take in information (either visual information, or audible) and respond to it.
  • Stimming – a repetitive movement, sound or word used to self regulate.
  • Webster-Stratton – a parenting philosophy and method. It’s not specific to autism, and you’d recognize it by it’s ‘time out’ method (1 min for every year old, no communication, stay on the step…). I completed basic and advanced levels at our local children’s center. But found the strategies didn’t work with us. I also found I wanted to adapt the time out process to include a sorry & forgiven stage. The part that was useful was the chance to see that we were getting lots of good parenting done – and that B’s reactions and behaviours were not typical.
  • 1,2,3 Magic – another parenting course, this time written by someone with autism in mind. Confusingly it uses the phrase ‘time out’ in a completely different way – a time to calm down and regulate. All about picking your battles, ‘contracts’, simple strategies, and tailoring rewards & consequences to your child.

I’m sure there are loads more that haven’t come to mind right now. And I’m certain there are heaps more still to encounter.

20161112_155630