Jumping on the #solidaritea bandwagon and expanding my #virtualvillage support network

Saluting those who were slated for being bloody awesome and highlighting the benefits of the virtual support network so many of us connect with

I started blogging as a therapeutic means for offloading. I follow other bloggers; some who share my passions and some who I may never have connected with if it were not for the wonderful world wide web. I have laughed and cried reading and sharing in their journeys. Before blogging, I felt lost and alone in my thoughts and overwhelmed by isolation. These feelings, it dawns on me, could be brought about by a whole manner of life experiences, not just my circumstances. So, wow, there are millions of people world wide needing a place to be heard and wanting a way to connect with people who ‘get them’ and their plight.

Whether you know exactly how you want to come across or whether you know exactly who you want your audience to be or whether you intend to be funny, ironic, emotional, honest or any other creation of yourself and whether you are a realist or a fantasist and whether or not you are technomologically minded (yep that’s a word now); your blog, is your blog. Yes it is potentially ‘out there’ for all to see, but it is yours and nobody, so far as I know, has the right to tell you what the bloody hell to do with it. Man, if this is the only space in your life where this fact is true, than even more credence to you. Sure, we open ourselves up to comments and critique; but that in my book is a conversation starter and i’m all for communication!

I’ll keep this short. I refuse to name the media source that is getting so much publicity for slating the ‘slummy mummys’ blogs but I was overjoyed this morning to clock the revolution. I love a good healthy battle! #solidaitea … now I’m not pretending that I am ‘up’ on how to use hash tags nor how to link other people/blogs to this post… but… I am doing my bit, my way, to salute those that were knocked for doing what I consider to be an amazing job! Go you lot. What a great come back! (If I were in the least bit aware of how to copy the link to the facebook post I am referring to…it would be inserted here… anyone who does read this and wants to teach me…please do get in touch! Lol)

https://www.facebook.com/hurrahforgin/?hc_ref=PAGES_TIMELINE

did that link work?!

As it happens, the slating of a fish finger tea amongst other things was the topic of my morning conversation with my 9 year old. Who…for the record…doesn’t even like fish fingers and as a rule, tends to have packed lunches for school… but guess what tomorrow is… it’s only a ruddy special school dinner day … this time the scam to get as many kids as possible to have school dinners on the day I assume the government takes some sort of stats and figures about how many children they feed hot school meals to, is beautifully entitled CORNISH FISHING INDUSTRY CELEBRATION LUNCH… otherwise known as fish fingers and chips! And of course my non fish finger eating poppet ‘needs’ to be in on this. I mean, who’d want to miss out on that!?

So fellow bloggers who rallied together to bring about that sense of #solidaritea, if our education settings can do it and call it a celebration nonetheless, perhaps certain media sources should spend less time attempting to bully and shame hardworking, life supports like yourselves and instead look at the real world that we live in!

Only yesterday, a day that allowed me to be a little braver than usual #PDAday, (a topic that I am passionate about because of my babybears disability), I connected with thousands of people quite unexpectedly. I’m new to this and it was overwhelming in a positive way to see that other people just like me, benefit from reading each others stories and just like me, have felt isolated and lost.

Long ago, I was told by a parenting whizz of a relative, that, a child could not be raised by its parents alone…it would take a whole village to raise a child.  When your community is small (in our case because of exclusion/disability/judgements) then you need to reach out to a #virtualvillage for support. And when you do… it is AMAZING. Many of us are doing this already, it is that day and age where we connect with people who we may not have seen for months or years, we join social media groups online and communicate with people we have never met, we have access to a wealth of information online without ever having to ‘study’ as such and so we build our village, our network, our community. Sure it’s even better if you have the face to face kind too but even when we do, sometimes, unless they truly understand your plight/predicament it can be hard to connect properly and share honestly with them, and that is if you are successfully making enough time to be able to do so around whatever roles you are managing. So i’m all for expanding the #virtualvillage.

I met people yesterday who shared that they’d been so alone… we can all make a difference here. A ‘like’, a ‘comment’, a ‘tag’, a ‘share’.. it is so easy (ha…she says!) but in doing so, we let that other person know that they connected with us. We close the gap on isolation. We can welcome each other into our #virtualvillage .

Please do not be alone. Come and find me on facebook. I’m doing my best to work out how I keep that linked with my blog! https://www.facebook.com/mummagrizzlybear/

I’m certain, that there is a more official way to share these links but this is the only way I have sussed out… Some of my virtualvillage includes:

https://www.facebook.com/thepdasociety/?ref=br_rs

https://www.facebook.com/groups/pdauk/?ref=br_rs

https://www.facebook.com/hurrahforgin/

https://www.facebook.com/theunmumsymum/

https://www.facebook.com/hashtaglifewithboys/

There are hundreds of people, pages and groups that contribute to my support network. However I am slow but learning and seriously must get on with the pile of paperwork I need to give my attention for my sons EHCP! Normal life must resume.

 

 

Grieving and functioning … post diagnosis 

Feeling sad about losing something you never truly had seems quite a mixed up concept

Mummagrizzlybear has been exhausted for too long,  a good night’s sleep does not relieve it and the opportunity for a ‘break’ doesn’t cut it either. Almost 6 months ago the chaos began and we can probably count on our fingers the ‘normal’ days since then. The irony of the word normal makes me chuckle sarcastically inside (mustering the strength to actually laugh is just asking too much); what I now refer to as normal, I’m certain, is anything but normal to Joe blogs. Is it the lack of normal that wears me out so? Would a week of normal restore me? 

There have been waves of emotions since receiving babybears official diagnosis back in January this year. We’ve probably dipped a toe into most of the stages of grief along the way and I felt I’d allowed myself the kindness to explore what I feel we have lost as well as fully recognising and appreciating the condition and its impact on my baby bear, so how can it still hurt and shock me when I’m triggered into noticing grief once more?

This week, year 3s in our area have been packed off on their first camp away with school. Baby bear had his name down to go prior to his exclusion. He’d however been excluded from this camp far before his official exclusion from school. School had not cashed my cheque for the deposit as they did with other mums. They instead brought me to a meeting where they described what they ‘might be able to do if his behaviour improved’ and rejected my offers to provide a carer to attend along side him so that he may be able to experience the camp along with his peers. I accepted that he’d need more support than others, but was adamant that he shouldn’t be excluded due to the nature of his disability – surely that would be discrimination?  However, school were not in the least bit interested in my suggestions and as it turned out, they made pretty sure he could not attend anyway. It’s been this camp that has alerted me to another facet of our not-normal life. It has resurfaced the grief. I’ve been exploring uncertainties like “would he have coped if he had been given the chance to go?” Right at this moment any change to routine causes massive disruption to his well-being, any moments mummagrizzlybear attempts to steal to herself are greeted with a needy Baby bear impressing demands for support in one shape or another, so could he have gone away for 3 days? Will he ever?

Feeling sad about losing something you never truly had seems quite a mixed up concept. But that’s where I’m at. I’m sad that he’s not neurotypically being packed off to camp on his first adventure away from home. I’m sad that he’s not in the slightest bit bothered that his peers get to do this. I’m sad that my aspirations about his future have diminished into a series of uncertainties. I’m sad that ‘new things’ require such a careful tact, I’m sad that other people can make ordinary requests of their child and not be met by anger. And I’m selfishly sad that I’ve reduced my working hours (to provide more caring hours and find a better balance between work and home) and feel zilch benefit so far from having done so (in fact the only things I’ve clocked is the half size pay packet and lowered moral).

I’m not so lost in this grief that I am unable to notice the ‘good bits’. I can name them. These past few weeks there have been a few worth mentioning. We’re embarking on night number 7 without a night-waking (strange correlation to having attended a sleep workshop last week!) We’re receiving support from professionals and there seems to be light ahead of next week’s TAC, baby bear has taken to holding my hand (on more than one occassion) in an affectionate nice way whilst we walk the dogs and we’ve shared some nice family time out together. Like I say. I can name them. Even crack a smile when thinking about them but it’s somehow not masking the sad bits.

A friend a week or so ago commented that I’d been absent but she wasn’t going to push me, she’d just figured that we were doing what we needed to right now. Another friend mentioned only today that we’d not seen each other in yonks. I’ve unanswered messages sitting in my inbox as well as incomplete work tasks that I’m routinely ignoring. I’ve not been for a run for ages and make-up seems an unneccesary chore. Professionals pass me tissues and ask questions about whether I have a supportive GP? I’m going through the motions of making sure I get ‘me-time’ or planning things to look forward to (a hen do, a holiday, a concert) but all with little positive effect and this is so unlike me. I’m irritable but functioning. Constantly tired but functioning. Emotional but functioning. Cutting myself off but functioning.  Seeing it here in writing is scary. My wellbeing is slipping and I’m in the driver’s seat choosing this path. How can this be? I know depression to be a stage of grief but it’s a place I do not want to visit. No matter how fleetingly. 

I know kubler-ross describes the five stages of grief to be Denial, anger, bargaining, depression and acceptance. They do not have a time frame for each phase to pass nor an A to B strict pattern to follow. There’s every likelihood that I’m simply re-visiting a stage that I’m less than comfortable with. And that’s ok. It has to be. Self-kindness has to be far more beneficial than beating myself with the metaphorical stick for feeling low. 

So for me I’ve given myself a bench mark for what will not be ok. Just as an extra self-care checker should I become scared again that this depression might not pass. If I can answer ‘yes’ to these, then I think i’m ok. If it starts to be ‘no’ then I’ll speak to a doctor.

1) am I able to enjoy myself in the company of others?

2) do I notice the sun or the blue sky?

3) is there other evidence or explanations for why I may be feeling low?

4) do I still consider myself to be functioning?

The diagnosis will not disappear. Life will continue to deliver little reminders of what ‘might have been’. There’s little point fighting it or playing the ostrich. Embracing it will be key but gently and only when I’m ready. 

Moon cycles (the ‘something’ in the air) and PDA 

You know those days that start off crabby? The ones where you’d love to be woken (anything past 6am) by a delightful little being who would love a cuddle but instead you are rudely awoken by an iPad obsessed grouch who just wants his immediate needs tending to instantly. 

‘Feed me & give me the ipad’ … I’m starting to wonder if I did follow these orders, how long I’d get uninterrupted sat in the sun?

However I do not bend to the rudeness and instead start the day strong full of a calm upbeatness explaining how ‘we’ can have our technology time after our outing. It’s beautiful weather here at the moment. It’s the school holidays and I’m in parenting top form and adamant that time with mum will be fun and fulfilling and not wasted on screen time. 

But there’s definitely ‘something in the air’ that I can’t put my finger on. It’s been here about the last 3 or 4 days. Mild at times. More severe at others. But most definitely overlooked until just a moment ago, and dismissed as just one of the joys of PDA. But i’ve just read a post on a very helpful PDA group from a fellow mum who remarked about the full moon… and there it is…the slap in the face of a reminder that as i’ve seen umpteen frickin thousand times before, the MOON plays havoc on my pda’er!

Somehow daddybear and I had even shared a conversation about the position of the moon last night but both neglected to acknowledge the link between this beautiful bright (almost) full moon and our niggly, moody pda’er. 

He isn’t always THIS grumpy. Sure he struggles with many a thing that drives us insane and cause him distress, but he’s not always this grouchy. 

The moon plays a role and I seem to neglect the power of this phenomenon each and every time!

Today’s moon moments included, being severely pissed off that mummagrizzlybear was not offering bacon gaps for breaky, volatile monopoly gaming, equally irritable about ‘waiting’ for friends to arrive and then ‘the traffic’ being in our way en route to our outing and then a unwarranted days worth of grouchyness towards our friends youngest child as well as an inability to engage socially with people he can usually ‘cope’ with. Now some of these things seem entirely ‘normal’ (of parenting joys) and you may only get this if you’ve experienced it…but mumma just knows when it’s more out of the ordinary and something is up! 

I didn’t discipline in the same ways today as I may have done a week ago, because something just told me another force was messing with him. 

I know the moon has taken its toll as baby pda’er bear is currently snoring away on my shoulder (8 pm ish) instead of sharing in the ‘boys-nite’ star wars movie. He’s not hurt anyone today or fully melted-down but it’s been hard work for him. He’s shattered. I’m proud of his achievements. 

The moon revelation reminds me that each month I say I’ll make some kind of a chart to track the moods and cycles to compare and analyse and then I sit here and smirk because a) I’m not really going to do this and b) because I already can predict the findings! Not only this, but I have also thought many a time about also tracking PDA difficulties with my own cycle and although with this too I am convinced there is a link, a chart tracking mummagrizzlybear’s hormones alongside challenging behaviours will probably only lead to negativity and self-criticism!

Scientifically of course i’ve attempted to find research to quantify the lunar effect theory  (I.e. I have googled it!) But in the absence of anything concrete I also remind myself that ‘their’ research was probably not done on a community full of those with varying ASD forms. 

So the next time I hear anyone utter the words “there must be something in the air”, I plan to first check out the lunar cycle before critiquing parenting because for me there really is a link!

The childs Tips on ‘going places’ and ‘doing things’ with PDA 

…and a mumma’s learning from the day!

This post comes to you straight from the mouth of our 7 year old baby bear who was diagnosed with PDA.

We’d had a brief meltdown over mummagrizzlybear buying the ‘wrong cheese’ and therefore ruining the prospect of cheese on toast. In mummagrizzlybear’s head this meltdown was not a great indicator that we’d successfully get around the supermarket unscathed. However with minimal intervention baby bear uncharacteristically calmed and joined me at the table for the wrong cheese on toast. (Feeding before shopping is a must). I used humour and mocked myself for getting such silly cheese and planting the seed that he could select and  buy just the right cheese at the shops. As we were compliantly engaging in reasonable conversation I dared to open up a new discussion. 

At a recent meds review the psychiatrist was keen to get to understand baby bears perspective and help him learn to be able to know when he might need some xtra medicine to help him cope. (He is on a very small dosage each night and a prescription for an ‘as and when required’ small dose also). On mothers day he’d yelled out “you should have known I’d need medicine to be able to do this” and this was my first eye opener to his ability to predict (and over worry about) challenges. I want to know more. I want to put this to good use.

So I asked. ‘Do you think going shopping is one of those things you find tricky?’

He replied straight away. ‘It’s leaving the house and getting ready that’s tricky’. 

‘Ah, I see, so I guess that explains why it’s tricky to even go to places you want to go?’

‘Yea, once I get there it can be ok. It can even be fun. As long as people keep out of my way.’

‘So how can I help you get ready to go out?’

‘That’s easy’, he says ‘just make it fun, like, let’s hop in the car we are gonna have fun in the trolley’ 

‘Oh ok’, I say, ‘I’ll practice that more’.

Lunch passed our lips with little mention of the wrong cheese again and I wondered how much the meltdown had really been about getting ready to go out. 

Next I needed to get him ready to leave (socks and shoes are a big issue). I tried reshaping my usual request type demand but it came out wrong. He smirked at me. ‘You forgot mummy’. I say, ‘you’re right, I did, show me how I could have done it’. Excitedly he giggled and shouts ‘we need socks so we can go put treats in the trolley’ and runs upstairs grabbing socks and independently pops them on!

Before heading out the door I said ‘hmmm, it might be cold out, I’m taking a coat’, he said ‘my PDA wants me to not take a coat , I’m taking my comfy jumper’.

The shopping trip was not without hiccups but in an effort to learn from each new day I’ve concluded that;

1) meltdowns will not always be about the obvious nor the thing they are ‘frustrated with’ in that moment.

2) where possible less is more when a meltdown is occurring. If safe to, avoid engaging in it..back away and remain calm. Talking to them, over them or at them exasperated things

3) use calmer opportunities to open up lines of communication. Ask what it’s like for them? See if they know of a better way you can help? Be interested in their suggestions. Talk until it’s clear it’s time to move on. This might be very short bursts but in our case our pda’er really holds on to info for a later date.

4) use humour. Definitely definitely use humour.

5) plant seeds. Let them come up with the ideas.

6) do not set yourself up to fail by being too rigid about the expectations and rules

7) shift the focus from the request or the demand and make it about the ‘fun’ or next thing that will follow

8) offer reassurance and humility, we all need comfort and to know that we can all get it wrong sometimes

9) be prepared to move on without successfully getting what you wanted but, return to it, try a new tact, you’ll get there.

10) be a team. Make yourself available to them and join them in learning about how their condition affects them.


Even good experiences can contribute to overload.

This just hit the nail on the head and helps me understand why even ‘fun’ activities they want to do can cause meltdowns. Thank you itmustbemum

It Must Be Mum

By Rosie and Jo’s mum.

It took me a while to get my head round these two ideas:

1. My daughters can be enjoying activities that they have chosen to engage in, want to carry on with and benefit from in many ways while still feeling stressed and overloaded by them.

Playing with friends at the park after school is a great way for other children to wind down but for us it didn’t help. In fact the end-of -chool meltdown would be worse if it had to wait until after a visit to the park.

Going swimming is fun and she might never want to get out of the pool but, if there is more than a handful of other people in there, we have to limit the length of the session to avoid tears in the changing room.

Spending time with cousins who you don’t see often is a…

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Rarely #ordinary 

We are all so uniquely ordinary in our own rights

In the world of PDA and parenting you’d be forgiven the momentary wish for ‘ordinary’ but life is rarely that. 

Sure we all get accustomed to what #ordinary looks like but it’s hugely subjective and elicits fantasies of what we believe other people’s ordinary to be. Is it better? Is it calmer? These are my regular queries! They don’t serve any purpose except reminding me to focus on on the positives of our ordinary day/week/life no matter how different/absurd or  un-ordinary it may appear!

Mummagrizzlybear squeezes a great deal into her one day a week off to accomplish ‘ordinary’ things like shopping and house work and a girly catch up preferably with lunch and of course time to blog…

https://dailypost.wordpress.com/prompts/ordinary/ 

…Or time to multi-task (see previous post  https://mummagrizzlybear.wordpress.com/2017/03/21/sen-parental-multi-tasking-calls-for-recharging/) and  blog whilst fending off sibling battles, pleas for help with home work and juggling the evening meal prep with childcare needs before daddybear returns home to tag in & open a sharing bottle of wine… it is Friday after all… and its ordinary that after a week of juggling (not struggling) that we find a way to unwind.

Ordinary I’m sure. What is it like for adults who have not become parents? Or non SEN parents? What is ordinary Friday behaviour? I’m guilty of making assumptions about many other ‘ordinary’ ways of life. It’s not envy. It’s curiosity. It’s grounding to discover many others doing the same and many more doing things differently. We are all so uniquely ordinary in our own rights.

☆ 3 positives ☆

1) it’s Friday and that means the adult tag team can be in full force and parenting becomes a two man job

2) great friends invite us for drinks and they don’t blink an eye when we turn up in all our un-ordinary glory

3) the kids are playing a mini disco from the iPad, selecting tunes from Spotify and you tube…their eclectic taste is straight from mummagrizzlybear and the last 3 songs have been ‘dangerzone’ from top gun, black betty and summer of 69. Super taste in my book!

“Specialbilities”

#Autism Awareness
One journey to diagnosis

Mummagrizzlybear has wanted to join #Autism Awareness, which has been superbly promoted amongst fellow bloggers such as https://www.facebook.com/LotsofLoveandAffection , but I’ve been stumped on how and where to start writing about the journey to littlest baby bears diagnosis. That was until tonight when a tongue tied slip-up of my 9 year old cleverly invented the word ‘specialbilities’ and there it was…my title…my starting point…bringing in my 9 year old’s perspective.

Having first given birth to a virtual text book baby, it is easy to look back and account for why we thought it such a good idea to bring another creature into the world. A ‘sibling’ was top of the priority list. I’d not wanted an ‘only’ child.

Skip forward 20 weeks or so and at the routine scan Daddybear and I were confronted with our first hiccup. “Please don’t be alarmed but baby has some abnormalities”. Impossible to not be alarmed by that word. Fast forward a little more and we make visits to different hospitals and specialists who after many weeks of pure torture manage to put our minds at ease and come up with a plan about the future. The future at that point consisted of the ‘birth’ and the days that followed. The abnormalities were not as scary as the first few professionals had led us to believe – at one stage we’d been told there was ‘ambiguous genitalia’ and this later transpired to be an issue with the kidney and bladder. This little creation had caused mayhem and unchartered emotions all from inside the womb. I really should have known then that this journey was going to be bumpy.

An on schedule birth far quicker than anticipated brought our smallest-bear into the world and made our first born the big bruv. Littlest bruv was an ‘unsettled baby’. The months that followed probably appeared ‘normal’. Both children met milestones. Mummagrizzlybear started a diary the day she were prescribed anti-depressants. I remember the shock. I had no idea I had developed depression. Sure my babybears were a handful most of the time but they were lively, spirited and energetic and I was doing my best to provide the text book upbringing that produced facebook worthy family photographs! The eldest started school and this gained me the 1:1 time with the smallest that I’d never really had until then. I started noticing and comparing my time alone with him to what life had been like with my first child at this age. This babybear was different. Harder. My little challenge. We kept to the expectation and attended mum and toddler groups and birthday parties. We were still invited back then! Before starting preschool we’d picked up on little things such as a high tolerance of pain and an apparent lack of response to temperature. He was easily irritated and sleep was a problem.

By age 3 the GP had sympathetically referred us to a community paediatrician who had met with us to discuss our concerns and kept him on his caseload over the next year or so for reviews which were not regular or all that helpful. Preschool did not report seeing the same issues we experienced at home and confused by this we explored lots of ideas and possible medical explanations for the challenging behaviours we encountered. We also began to jump through the hoops of the professionals as the Paediatrician sign posted us to ‘parenting programmes’ despite us having another older child who responded appropriately to our ‘parenting’.  During our own search for answers and with the power of the internet at our fingertips mummagrizzlybear began researching. Speech and Language were referred to by the Paediatrician to explore the possibility of ASD traits, however they attended the school to meet our son and concluded very quickly that because he gave eye contact that it was an inappropriate referral. I’d worked with young adults with Autism and Aspergers and something didn’t ‘fit’ our son, so at this stage we didn’t feel it important to pursue this any further. He began to make progress at school and separately mummagrizzlybear had gained confidence and with therapy and a new focus i’d overcome the need for anti-depressants. However, my search continued. I felt there was an answer somewhere to explain the difficulties we had. Innocently and quite by accident, I came across ‘PDA’ (Pathalogical Demand Avoidance), a form of Autism, which was like reading a text book on our son. I remember reading it and crying. Daddybear cried too. Full of confidence I penned a letter to the Paediatrician, the health visiting team, the school and the GP explaining why we felt that this should be investigated further. PDA explained some of the Autism traits but also gave an explanation about the ‘surface level sociability’ and eye contact as well as giving an understanding about the difference between home and school behaviours. It was a relief to read that there could be an actual medical interpretation and less finger pointing about parenting capacity. The wind was quickly knocked from my sails as we faced the critical responses of professionals who did not like parents attempting to medically make assumptions about probable diagnosis. Every service at that point seemed intent on disproving our assumption. Within in months of being discharged from the paediatrician who coincidentally reported that PDA did not exist and was not recognised in this part of the country, mummagrizzlybear made a phone call to a support agency seeking advice about new presenting behaviours in school and how to go about getting support when there was no diagnosis. This call was handled by a friendly, warm lady, who listened and with limited details asked me tentatively if I had ever heard of a condition called ‘PDA’. We laughed and shared an understanding of each other’s circumstances as she revealed that her son now had this diagnosis and he had first been seen by the same paediatrician as we had just been discharged from. Recharged, I went back to the GP and requested that we be re-referred back to the community paediatrician. Secretly I hoped we would be lucky enough to get a different consultant this time around. At this stage we had a family worker supporting us due to the volatile nature of the behaviours at home. Things had peaked and it was evident that our son was not coping and that his mental health and well-being were being affected. He’d become more and more Jekyll and Hyde like and scared mummagrizzlybear with his threats to harm himself and others.

Here starts the waiting game. Our GP referral to the Community Paediatrician was ‘sifted’ and instead sent to the ASD Team for consideration. The ASD Team got in touch with us to request additional information and this prompted an effort for a collaborative approach from home and school. School now took the stance that they were ‘managing’ his behaviours and ‘coping’ without any extra intervention, however they agreed to support us in providing additional support to the ASD Team. A couple of months passed before we were notified that our sons referral had made it on the waiting list for assessment. I’d like to insert here feelings of relief but recall more distinctly the dread. The dread that we were potentially sitting on the wrong waiting list off the back of  our mere parental assumption about PDA. In the mean time the Family Worker had attempted to get him seen by CAMHS but this too had been sifted and ‘his case’ discussed at a Primary Mental Health consultation before concluding that as he was on the ASD waiting list he should not need to be seen by CAMHS. The ASD waiting list was 18 months and rising. During this time an acquaintance from the school gates who noticed the difficulties we were encountering (where other people turned a blind eye)  recommended a private Occupational Therapist who had recently supported her with her children who presented with some similar behaviours. With a little more research, we booked an appointment to meet with the OT, and reassured by her initial assessments, observations and our sons apparent trust and comfort when visiting her, we agreed to pay for a SIPT (a sensory integration assessment). In the months that followed we held in our hands a comprehensive document detailing from a sensory perspective why our son behaved the way he did. It included recommendations to support someone with sensory processing disorder and we assumed as it were a clinical document those suggestions would be observed in a multi-agency type approach. How very wrong we were. At times we were met with very unhelpful comments such as “you will get any diagnosis you want if you pay for it”.

Over the next 12 months we managed to get school to amend IEP’s to include a sensory diet and they began to enlist the support of specialist services to write behaviour plans. Various interventions were tested and reviewed. Briefly TAC meetings were held, but at that time the team around our child was very small. Our relationship with school began to break down as we felt they began to withhold information from us and often dismissed any issues we raised with responses like “we are managing his behaviour” and “he doesn’t meet the threshold for… (fill in the gaps)”. We met regularly and complied with the support plan expectation for us to work collaboratively, however nothing felt collaborative; it had become an ‘us vs them’ situation, where at home we had become more and more isolated and in school we fought for what was right for our son. By age 6 the school’s managing strategy included a Team Teach response of regularly restraining our son where de-escalation tactics were ineffective. His challenging behaviour increased and as parents we felt the school were failing to respond appropriately. They kept telling us that he would not meet the criteria for an EHCP, but without this, we didn’t seem able to force their hand to engage additional support to help him. Their efforts to ‘meet his needs’ were inconsistent and by age 7 it became apparent that he’d lost trust in the staff supporting him. Most scarily he started reporting incidents where the staff had hurt him. He began verbally expressing how scared he was of going to school and displayed more and more angry behaviour. Admittedly, he was a volatile child, unpredictable, capable of lashing out and behaving aggressively. He’d throw chairs. He’d learnt to swear. He’d refuse to engage and disrupt lessons. But this wasn’t all of him. He was bright. He loved maths. He was observant and caring. When ‘calm’ he was endearing; a right little charmer. As parents we knew his triggers and we supported school all we could to acknowledge and respond to these but their set-up just couldn’t bend enough to make things inclusive for him.

Less than a term into key stage 2, we were presented with a document that stated that one of the consequences that would now be applicable if he presented certain behaviours was for him to receive a fixed term exclusion. We argued this. Surely this was inevitable given that he presented those behaviours regularly and as the adults supporting him we had not been able to consistently identify triggers nor solutions or strategies to help him at those times. We had however reached the point where they were willing to refer to a private Educational Psychologist for additional guidance and by now we were aware that his ASD assessment was imminent. We hoped that the collaboratively they would support us with suggestions. The EP came but his visit was unsuccessful as our son refused to engage. No great shock considering his ‘fear’ of ‘new people’ and avoidance of most things -even things he loved doing! Then came the phone call. “We need you to collect your son; due to prolonged extremely challenging behaviour he has been excluded”. There’s scope for a whole blog to describe the weeks that followed this. It was awful. We’ve been massively let down by the ‘system’ and to cut a long story short, the school refused to take him back, claiming that there was nothing further they could do and that they could not keep him safe. Weeks later he went through the Autism Assessment process and was very quickly diagnosed with Autism with a PDA profile. We have no doubt that the school had intentionally ‘moved him on’ before this diagnosis had been reached. I firmly believe that the school did not have his best interests at heart when doing so and neglected some fundamental legal principles in taking this action, something which when I have enough energy to do so, I shall confront them on.

For a time he was without an education provision and we compromised our employment needing time off to care for him (and to pursue daily phone calls and emails to various local authority departments) before he was eventually secured a placement at an Alternative Provision Academy. It was a little too close to a horror movie for mummagrizzlybear watching her baby bear struggle with the change, the transitions, the scary behaviours of the other students and seeing his mental health deteriorate. We’d gone from ‘managing’ in mainstream to a whole new world and the unsettled period had resulted in an even more volatile son. He’d attempted to harm himself, continuously put himself at risk, had stopped sleeping, was experiencing significant anxiety and was hurting his family members. The ASD Team witnessed the urgency for CAMHS to also be involved and luckily for us within 6 weeks of a diagnosis with one team we were also meeting with a Psychiatrist. The ASD/PDA diagnosis had not been a shock but was still uncomfortable to get your head around. We have taken the approach of wanting our children to be experts in understanding the diagnosis and shared things with them openly. I truly believe that ignorance is a far bigger disability than Autism and that so many children (and adults) have such varying additional needs that we should not allow ourselves or our children to somehow negatively stereotype such people. The Psychiatrist prescribed anti-psychotic medication for the perceived ‘intrusive thoughts’ that were likely to be exasperating his anxiety attributed to the PDA. The apprehension we felt about administering the medication was a challenge but we have gone along with things, hopeful that the benefits will outweigh the negative side effects. We are now at a place where an EHCP has been applied for. His temporary education placement will ‘keep him’ for a term or two more and support services are beginning to come out of the wood-work. He is nearly 8 and each day throws up new challenges. We are tired and wounded, and at times we feel we are failing but we are resilient (you have to be) and creative about coping strategies. We are warriors with invisible armour. We are a team.

I’ve mostly removed emotion rom our story. Probably subconsciously saving this from becoming an extensive rant about the crap we have gone through to reach the point of diagnosis. Equally, if I allow myself too much time to reflect over just how bad things have been over the past 4 months in particular, I may well jump off the nearest cliff or onto the next plane out of here.

Living with specialbilities has its plus points. We are constantly learning. Our house is a sensory haven. We view the world through fresh eyes. We have a new appreciation for the small things – minor victories that other ‘normal’ families overlook. We’ve expanded our support network with people who understand and we’ve filtered out the more unhelpful, judgemental ‘friends’. We have learnt how to monitor and take care of our well-being, practicing self-care and being less critical when we have ‘down moments’. We make the most of the little extras like a ‘free carer’ perk or a ‘queue jump’ ticket and no longer feel ashamed or guilty for doing so. We know how to ask for help and have learnt to reach out to others who may need our help also. We can voice our needs and manage the balance of home life, work life and the special needs jungle of appointments and meetings. Our children know how to talk about different needs and are supportive of other children they meet who face challenges. We have many a moment where we crack or crumble but we are a family who have learnt the importance of communicating our struggles and overcoming them together. We have not been beaten thus far and that’s because as a family we have specialbilities.  Acceptance is key.

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