“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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SEN Parental Multi-tasking calls for recharging

multi-tasking (efficiently), first requires us to look after ourselves.

Many a parent are proficient in this skill and i’m not about to single out just the female sex on this front although daddybear in our house may need to practice this skill a little more to meet mummagrizzlybear’s standards for multi-tasking.

To begin with, multi-tasking (efficiently), first requires us to look after ourselves.

A typical day for mummagrizzlybear combines parenting two demanding babybears with very different needs (something I plan to devote an entire blog to in it’s own right), playing breakfast chef and chief lunch maker whilst tending to the doggy & dishing out suitable daddybear attention prior to him heading out for his long day at work all whilst remembering to frantically grab the ‘work’ essentials to see me through my day supporting my client caseload and delivering emotionally uplifting support groups. During this time of course I’ll receive the odd email and calls here and there that should not be given my attention during work hours but instead consume my breaks. Today’s were from the Autism support team, A Young carers support worker and the medical Secretary to my littlest man’s psychiatrist.

In amongst my work day I’ve recalled that I’ve still not managed to squeeze in the birthday shopping required to let a bestest pal know that I love her for her unwavering support she offers…doh… bday is tomorrow… queue a plan to ensure suitable present is purchased prior to school runs (work admin can wait til the kids are tucked up tonight – cos I’ve nothing else to do with my ‘free’ time honest!) Then once home with the babybears I squeeze in a quick friendly cuppa and catch up (literally just half hour) to ensure taking care of personal well-being is ticked off the to-do list. Then it’s a mad dash to the swim lessons amidst resolving sibling conflicts, an injured biggerbruv (who trapped his fingers in the wardrobe he was hiding in), managing the ‘I can’t leave the house PDA meltdown’ and quickly and rather unlovingly overcoming the ‘mummy I had an accident in my pants’ moment as we headed out the door! So I’ve made it. I now have a full 30 minutes where technically the kids are out of my hands and in the pool. I frantically send umpteen ‘work’ messages that I could have/should have sent earlier in the day. I’m plagued with guilty reminders that there are also various friends, relatives and companions who are neglected of my reply to their messages in recent weeks! I’m contemplating dinner that I haven’t prepared and toying with the idea of bringing back ‘iPad time’ on a week day just to ensure that I can prepare the evenings meal whilst the sprogs are entertained/babysat by a screen. Bugger. They’re lesson is over and I haven’t finished blogging. Crap….

…4 hours later…

Babybears tucked up *asleep* …check… all admin/work/adult responsibilities attended to…check… ok, blog time resumes.

My point, if I remember correctly was to somehow explore (rant over) the multi-tasking capabilities of parents with children with additional needs. I’m certain most parents feel pressure but I’m silently convinced that medals should be dished out to those SEN parents managing to make their lives look as though they are not just in order but also that they can fit in being a huge array of different roles to different people, from mumma to professional to nurse to cook to confidante to parent support and the list goes on. Not only this they are timetabling gurus capable of taking any given week and squeezing in another appointment or meeting (with a professional or service they’ve no doubt waited for months to become involved and offer help) whilst at the same time navigating all pick ups and drop offs accordingly (abandonment of sprogs is frowned upon even more so if child has additional needs) and convincing employers that they are still meeting all contractual obligations whilst not forgetting to be a frickin awesome life partner, friend and home-maker amongst other titles. Mummagrizzlybears’ calendars are marked by those appointments that you simply cannot turn down but quite frankly are not certain you can fit in. It is an art. It’s certainly a skill and it’s not for the faint hearted. If you are on a journey that has inevitably linked you in with ‘services’ and if you have been that parent ‘asking for help’ then my goodness you better be available when the help starts being offered. And then you must be available once more to chase up the ‘help’ you were offered, because it does not just keep to it’s word and deliver. And then you must be available to research and fight for what’s right because although ‘help’ is out there if they can move people on from their caseload they will. And then you must be available for the unexpected. And then you must be available for the unplanned. And then you must be available to be tired. To be ill. To be stretched too thin. To have time to recuperate. To take time to repair. To find time to adjust…

… To look after ourselves…

Each new day, regardless of how many thankless tasks face you, must start and end with looking after OURSELVES.

We cannot pour from an empty jug and each of us would be quick enough to find a charger if the battery were about to die.

Recharge. Multi-tasking eats up your battery. You cannot recharge without first plugging yourself in. Talking about recharging will not being the phone back to full-battery. Planning to ‘charge up later’ means that you cannot be connected with until you have recharged. Avoiding recharging further incapacitates you and those who rely upon you.

Recharge. Look after you.

☆ 3 positives ☆

1) I set myself targets today that I have stuck to and ticked off

2) planning/ calendars/ appointments/ work schedule all in order with a couple of gaps for the ‘unexpected’

3) recharging activities prepared for after blog time

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Combating negativity. A PDA PARENTING SURVIVAL STRATEGY

The power of positive self talk …

Parenting at the best of times can be an uphill struggle and overwhelming for many reasons. Throw in a mix of sibling rivalry, parental financial concerns and a dose of PDA- professional involvement (or lack of for some) and the ‘normal’ uphill struggle can quickly become a phenomenal mountain – one which you keep slipping back down and then must re-climb the very bit that you mastered or overcome the day previous!

Negativity is in abundance and acts like a magnet. One slip-up attracts another. One blip gives way to the next. Working on our own individual mindset is mission enough and all too often parents raising children with SEN and disabilities also have to encounter frequent judgemental opinions of other families, professionals attempting to filter out those who do not fit their service and relentless form filling designed to focus in on identifying ‘problems’. All of this added on to the usual negativity of life’s stresses could arguably be sufficient evidence to predict how so many families end up with poor mental health, crushed confidence and depleted self esteem. Are you tired, emotionally exhausted and at times feeling helpless and hopeless? If you are then you may be able to empathise with much of mummagrizzlybears posts. I am mummagrizzlybear and I am determined to share some positivity amongst an isolated community of parents who suffer unsupported at the hands of professional systems that let them and their children down.

My personal well-being has been on a rollercoaster ride in recent months. I’ve experienced depression in previous years and have more recently encountered panic attacks, which shook my world more than the postnatal depression ever did. I’ve journeyed through antidepressants and various therapies over the years to reach a point where I no longer use medication to survive and am able to just about live as opposed to exist and on most occassions manage to create the right balance between home and work too. I am privileged to work in an arena that constantly allows me to support others into a more empowered position. We work on confidence and self esteem and self care. It is this very work that I believe has rescued me over the past few months. I have been able to apply tools (without even noticing that this is what I was doing at times) and overcome issues that otherwise may have sent me to the top of a cliff. How? Well it may sound patronising but I firmly believe we have more control and choice in life than we ever give ourselves credit for. We can choose to let negativity take a grip or we can choose to let it be an experience that we acknowledge and then let it go.

I’ll give you an example. 

Yesterday I received a copy of a referral written by a very unsupportive head teacher and senco of the school from which my son was excluded from months ago. I’ve awaited this paperwork with trepidation. I had unconsciously decided that reading this paperwork would be hard. I’d attached my previous negative experiences of this witches lack of support with the current situation. On reading the referral I felt victimised. I felt targeted. I felt blamed. I found fault in her statements. Inaccuracies in her reports. Flaws in her wording. I took offence. I felt wounded. One line kept repeating over and over in my head. I handed the paperwork to daddybear and be scanned it and handed it back stating that although it was shit..it didn’t say that I was to blame nor did it say I’d done anything wrong. These were my own insecurities. These are the negative self talk haunting even the sunniest of days. But in that moment I could see that I had a choice. I could choose to let her opinions and inaccurate assumptions consume me or I could repeat my self prescribed mantra of positive self talk : 

“I am a good mum” 

“I am doing my best”

“Other people are entitled to their opinions; it doesn’t make them true”

“It is none of my business what other people think of me”

“I free myself from negativity”

“I choose to remain in control”

Negativity is consuming and rarely productive. It serves little purpose. It drags you deeper into it’s pit and relishes in our submittance. It watches us crack and surrender and will never offer a helping hand out of that pit. However, if we turn the tables and treat negativity differently it becomes weaker. Allowing yourself to recognise the feelings you experience. Name them. Explore them. What does it feel like, how has that affected your body and your thoughts and your behaviours? Now comes the part so often we forget to do… ACCEPT IT. You do not have to undo it, fight it or allow it to grow – just let it be. It’s ok to acknowledge that in a given moment you feel negative but it’s here in this moment you have the power. Here you can make a conscious choice to recognise it, experience it and ACCEPT IT, this is the liberating stage. It’s empowering you. Create a bank of positive self talk that you can turn to when you accept that negativity is filtering in. Choose to take control back and repeat these messages to yourself and out loud to others if it helps.

I was sharing my story of this form that had angered me with a great friend who turned and said “how are you so calm? I’d want to stick a hammer through her head if that were me!” For a moment we laughed. I shared just how I had felt initially and that yep mummagrizzlybear had definitely experienced momentary devilish revengeful thoughts but how much better I felt for practising my mantras and refusing to allow the negativity to win. Interestingly I’ve noted that by sharing my story I encountered further negativity  (even from a meaning well friend)… watch out for that… it’s everywhere.

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It is in the ACCEPTING that you will discover a freedom. A release. Some people practice mindfulness as a means of learning to live in the moment and let things go. I find that simply allowing ourselves to accept what is happening for us in that very moment is the way to look in and recognise our opportunity to get back in control. We can make healthier choices. We can choose to be happier and calmer. Negative emotions just eat us up and weaken our armour that we very much need to continue to ‘battle’ on for our children. Whoops.. . Look at the negative wording in there… ‘battle’ … I’ll rephrase that as I can choose to reframe things to ensure negativity is not in the driving seat. We need to focus on positive self talk more often to enable us to continue to grow and be everything we are needed to be for our children.

Sulking. Emotionally wounded all before 9am. 

Mummabear is wounded. Hurt by words. Scarred by her failings and torturing herself with what she assumes other families do on Sunday mornings

Sunday’s generally comprise of Rugby matches in the ungodliest of weather conditions, ironing piles and Roast dinner (the saving grace). Sounds fairly standard I suppose? Except thrown into our normal Sunday routine is what I can only honestly describe as mummabears sulk. It’s not that I don’t like Sundays or rugby viewing in the cold for that matter but something about Sunday seems to mark the ‘you are failing as a parent’ card.

Today it was a pda breakfast protest. But it could have been anything. Sleep deprivation catches up on me…mostly by Sunday so I’m low on tolerance and patience and in mummabears true style I’m also newly determined (as we are embarking on a new week) that ‘ From now on’ we shall not be dictated to by PDA nor shall I allow children (PDAer or biggerbruv) to speak to me disrespectfilly. No ‘good’ parent would right? But of course I’ve decided not just this. I’ve created a mummabear monster who is expectant of not just well mannered children but also for those children to miraculously have morphed over night and comprehend the ‘new rules’ despite having had a late night.

Here comes the first blow. Baby bears wake up foul when short on sleep just like mummabear. Daddybear opts for “I’m not getting involved” attitude sensing mummabears is on a mission and all to knowingly ready for eruptions. 

On first glance mummabear appeared to have things nailed. Delivered clean rugby kits to babybears and giving clear firm instructions (carefully worded for pda’er to avoid instant meltdown) and cleverly informing them that breakfast was not up for debate or negotiation other than they could pick ‘small/medium or large’ bowl of cereal. Normally here would be where I’d insert ‘mega meltdown’ but even pda’er despite initial refusals requested a large bowl of chocolate crisp (not healthy but also not me being demanded of bacon and eggs). We’d agreed a choice of lunches to look forward to after rugby. All seemed well. That’s where I come undone. I allowed myself just briefly to feel ‘smug’, to feel I’d achieved my goal all without the help of daddybear and more importantly without losing my cool. Bonus.

NOT! Bliss is interrupted by Bigger bruv requiring some attention for some cream to be applied to a sore. A sore that I hold accountable for the resulting pda’er meltdown. “Urgh you’re disgusting I can’t eat now” (that’s the mild censored version of what came out of 7 yr old’s mouth) along with lobbing the ‘large’ bowl of cereal and verbally lashing out with unnecessary insults towards Bigger bruv and mummabear. Mummabear at this point is emotionally broken. It can happen that quick. To be so gutted that it’s pre 9am and it’s already cocked up is so overwhelming for sleep deprived mummabear that it’s a red flag to a bull. Children were not supposed to be rude and disrespectful today. Today was going to be different. Crap. I’m failing. Mummabear launches into response without clear planning or breathing (to allow necessary oxygen to reach the part of the brain that acts rationally!) And so we are in battle mode. A quick ‘consequential reminder’ is ineffective with PDA and knowing the strength and stubbornness of littlestbruv, mummabear opts for physically removing him from the room, partly to save Bigger bruv from the onslaught and mostly to get some desired effect (they had a movie on in this room so removing him removed that privledge) but now he’s proper furious and the abuse is hurled full throttle.

Mummabear regains mild control (of herself and the situation) by bringing in the newly purchased tool of a lovely brightly coloured sand timer (I’ve purchased 3 of varying times and I’ve quickly discovered that this means I can assess how much time I need to feel calm again and so use that colour accordingly) and instruct that he was to sit ‘there’ and think about the way he had reacted and spoken to me. He of course threatened to smash the timer but relented when threatened with the longer time frame of the blue timer I had not selected on this occasion!

During the timer break mummabear sips coffee and delivers daddybear his, whilst uttering mildly mad-woman comments like “I’m not putting up with this any longer” and “I will not give in” only to be greeted by the back of daddybear who is probably pretty pissed off to have been woken with this kind of shit again. We go to bed to this kind of shit too so we are all a touch bored of the same shit different day motto. But not today. Today was supposed to be different.

In the moments that follow the timer finishing mummabear receives a half arsed attempt at restarting the battle from pda’er before getting a disgruntled ‘sorry’ accompanied with the disclosure that there was no way i was going to get him to eat anything now. Oh well. I’m certain he’s had a few mouthfulls pre meltdown so that will have to do. Bigger bruv then brings out his big guns opting to also speak to mummabear like the proverbial piece of poo which brings about more stern words and ‘consequences’ because today is different remember. Daddybear chooses to join me on the frontline and reinforces some of my more rational utterings and before we all know it we are somehow all dressed and in the car on the way to rugby. 

Pda’er is showing minimal sign of remorse although he’s complied and is in the back seat as requested so that’s good enough for me. Bigger bruv is conscious of mummabears resting bitch face (see previous blog) and intermittently offers sorry’s and random conversations to try and break the mood in the car. Mummabear and daddybear barely communicate aside from pleasantries because the discussion mummabear wants to have is not for baby bears ears.

Mummabear is wounded. Hurt by words. Scarred by her failings and torturing herself with what she assumes other families do on Sunday mornings.

Although completely pointless  (other than allowing time for writing this blog) mummabear sits in the car sulking instead of joining her boys pitch-side.oh crap. There’s something else to feel shit about. And so with one long sigh topped with a deep breath and a search for a snippet of blue sky mummabear pulls herself together and pursues the supportive mother role in the cold. (Not without grabbing a coffee first… and definitely definitely not relenting on the today will be different motto) 

☆3 positives☆

1) the day is still young and despite a rough start I can choose to write a better middle and ending-  think I’ll go zumba tonight

2) I’m booking some flights later for a much needed short ‘adult only’ break 

3) last night (the late to bed night) we survived (unscathed) a friends party where pda’er would usually have numerous meltdowns

Sporting my best ‘resting bitch face’ we plod on…

My face makes him ask ‘mummy are you cross?’

Monday Monday… the house falls silent. I should be on my way to work but I’m basking in the ‘still’ in the calm and mellowing my own racing heart. I can feel my pout and furrowed brows etched on my face and I’m trying to relax. My resting bitch face appears all too often. Some people naturally look chipper when nothing else consumes them; not I! I have a face that says I’m mad even when i’m not. When sat in thought or idle  boredom my face tells others to not cross me. It’s not intentional. 

Mummagrizzly bear has the face that makes Bigger bruv ask ‘mummy are you sad’ or ‘why are you cross’… littlest bruv doesn’t detect this so well and of course probably assumes that any of the kick offs so far this morning could account for the bitch-face-look I pull off so well these days. I wonder if I wore it pre-diagnosis? Sure, things have been far harder in recent months but did my face ever resemble anything other than a knackered pissed off crazy lady? Possibly not since Littlest bruv was about 6 weeks old! Tough from the start he was. Now aged 7 and causing mayhem despite us reaching that pinicle moment of diagnosis in early January; as a family we are probably in more a state now than we’d ever been without a diagnosis.

Bigger bruv was grateful to get out the door early. A recent tactic employed by mummagrizzly bear in an attempt to save him from witnessing the battles we go through to get littlest bruv safely off to school in his taxi. So dutifully I text to arrange for Bigger bruv to call in on a mates on the way to school and therefore pack him off ahead of the storms. He’s already endured the breakfast battle and the teeth brushing battle and the ‘surrender your weapons’ battle (no I’m not letting littlest bruv go to school armed with daggers and swords no matter how ‘toy’ like they are!) So I’m pleased he’s out the way and sent off for his learning day relatively unscathed. I’m hoping now that I mustered a smile to crack the bitch face look as I waved him goodbye. 

Littlest bruv is actually calmer with my undivided attention too and on this occasion gave in to a brief cuddle and a game of catch (ultimate distraction) as we awaited his taxi. Compliantly and calmly he’s set off today. I’ve learnt that  this will have no significant bearing on how successful his day will turn out and think that’s why I find myself Sat wearing the resting bitch face contemplating my day. Mummagrizzlybear has lost her spark for her job since being off for over a month with Littlest bruv out of education. I’m back at work but either only in mind or body, never both together. I feel detached. Incomplete. Distracted by home and yet grateful to be momentarily distracted by work. Over thinking and yet not focussing at all. Feeling behind in all areas of my life. Suddenly the resting bitch face let’s out  a therapeutic sigh and I’m reminded to find my 3 positives before I plod on with Mondays duties.

☆3 positives☆

1) We’ve shared lovely parts of our weekend watching rugby with family with minimal meltdowns

2) Littlest bruv managed a whole day being cared for by my cousin meaning that there are opportunities to ask for help that work

3) Biggest bruv is newly motivated in a maths challenge at school and mummagrizzlybear loves an opportunity to play maths teacher

…Can I get away with another work from home?! Just read a quick blog that sums up why I feel so tired before my work day starts…

http://themword.ie/calling-bullshit-special-children-sent-special-parents/

A flawed system vs parents that coped for too long… Just a normal day navigating ASD and ‘professional involvement’

I crack. I know they hear my tears. I plead. “Who should I tell that we are falling apart?”

First. Just a brief back ground. Until Nov 2016, there had been virtually zero professional involvement as our son had no diagnosis and school were ‘managing’ him. We however were simply existing but painting a good picture. We had a behaviour plan and a support plan; neither of which meant that anything was really changing or improving and for many years we had battled to be heard and get support. We had made it onto the ASD waiting list and had a behaviour support worker linked in with the school who had suggested PDA strategies in handling our son. 

Then came a short fixed term exclusion. Followed by a prolonged period of being let down. Let down by the School, the education welfare system and health professionals. 

Skip on a couple of months and we now have an ASD/PDA Diagnosis. Our son currently attends a short term provision which is 25 miles away because his mainstream school refused to take him back. He’s been there 3 and a half weeks. He’s been excluded twice. Daddybear and I have exhausted our holiday entitlement and sick pay and we now have a council provision taxi and personal assistant chaperoning to and from school.

And so I jump to today. 

Started early. Severe lack of sleep from the 4 night time scream fests in the middle of the night. He’s petrified of his school and the volatile environment even though his behaviour accounts for about a tenth of what happens there (there’s only about 10 kids). Despite voluntarily getting dressed and a minimal amount of support to get food inside him today, he then began to show us just how anxious he was ahead of his transport arriving. The physical outbursts began. The avoidance strategies. The defiant behaviours. The spiteful hurtful tactics. The self injurious attempts. The lashing out. The emotional blackmail. The manipulative stance. All to no avail. You see, I have to go to work. I can’t take him. I can’t stay here. I can’t comfort him. And most of all I can’t make this better. I also have bigger bruv to get to school too. This poor little brave soul who strokes my back in reassurance as I endure another physical attack; the amazingly supportive 9 year old who attempts to cajole and encourage little bruv to conform and he who tries to passify the commotion and comfort his mummagrizzlybear and little bruv. Eventually, with tears, snot and mummabear bruises amidst declarations of love, he’s carted off to school and I deliver bigger bruv to his school gates willing him to have a good day and reassuring him with a strained smile marked by leaky mascara.

On return and in despair I call MARU, knowing this can’t go on much longer. We’re a family crumbling. There was a referral put forward by CAMHS for a disability social worker and we’ve not heard back so I thought that might be worth chasing up. Guess what… they can’t find/see that referral, but they’ll get back to me! I crack. I know they hear my tears. I plead. “Who should I tell that we are falling apart?”

Then I get a call from Early Support area coordinator, calling about the forthcoming TAC meeting and to explain to me their role. Turns out, they’re involved to coordinate the professionals involved. All of the professionals involved have declared they cannot be the lead professional and so I ask, as coordinator,  can they resolve this ahead of the TAC. To this he replied that this might mean that the early support TAC was not going to work after all. 

I crack. I know they hear my tears. I plead. “Who should I tell that we are falling apart?”

Fortunately he has time and hears me. He says he wants to help. However an intervention/support he has in mind needs approval by a manager who isn’t available until tomorrow and he doesn’t want to get my hopes up by telling me what this may be just in case it’s declined. In addition, should social care disability team become involved this will prevent this teams engagement with us.

Through the day I am contacted by the transport company who feel for me after watching each daily ordeal to get a very scared little man in their taxi. She says “you shouldn’t be sending him there “… thanks! I know this is wrong for him but it’s all we have. She recommends some provisions that other children she has transported went on to attend. She also recommended some support agencies she has heard of. This is a taxi driver who cares, doing way more than the council pay her to.

So I call. The recommended provisions sound nice. They sound accommodating and much closer to home and as though they can meet our sons needs. But they are full. They also require an EHCP, something, although promised and finally acknowledged as necessary, nobody has applied for at present. The mainstream he was excluded from still holds all the cards and refuses to follow protocol and make the required referrals (nobody is prepared to hold this school accountable for their lack of action/support in initiating the TAC/ Applying for the EHCP or referring to the County EP). The mainstream wished to wash their hands of him and have done a fantastic job of isolating a family in need. Without the EHCP I can’t even begin to talk to the specialist provisions about securing him a place in their full schools. It’s endless.

I called and spoke with the recommended support services who needed the social workers details… Guess what… We don’t have one (yet) so this agency cannot help us at this stage but referenced their amazing package of care available if our ‘needs assessment’ (which we haven’t had) indicated that such a package was necessary. 

I called and spoke with the temporary provision alerting them to the issues we had through the night and this morning’s antics and asking for ideas about how we can help him feel less scared. It’s pretty fruitless. The staff there are supportive but stretched and have to pick their battles between achieving a day where minimal children destroy their setting or striving to offer a learning environment to the few in a state fit for learning. As they are temporary they will not act as a lead professional at a TAC.

The family worker we have (who eventually initiated the TAC) is due to ‘close’ next week having completed her piece of work with us. 

The social emotional behaviour support lady who worked with our son in mainstream is due to close because her services are not normally required once a child attends the type of provision he is at now.

The autism support team (education focussed) have accepted the referral but cannot offer support until April/May. 

CAMHS have been helpful and we saw a Psychiatrist within 6 weeks of this referral being accepted however they are not available to lead a TAC.

I crack. I know they hear my tears. I plead. “Who should I tell that we are falling apart?”

The laughable thing is today was a work day. These calls and emotional heart wrenching hours that have passed have done so whilst I’ve tried to work. I called in and said I needed to work from home and fortunately have a role where on occasions I can get away with this but it can’t go on. It’s not a solution. My work is suffering. My health is suffering. 

If we hadn’t have ‘coped’ so well,for so long, would help have stepped in? How bad does it have to get? How many people should you tell? 

In true mummagrizzlybear fashion.. I’m tired and bedtime is still to come. But as ever I’ll end on finding my 3 positives… some days it’s hard but it’s quite probably what keeps me going.

☆3 positives from the day☆

1) I have a flexible job and was able to recuperate at home

2) A friend called in just because she detected that I wasn’t 100% reminding me that I’m not alone

3) Bigger bruv  had a good school review report from teacher and littlest bruv actually kept it together all day despite the horrid start 

Forgive me an irrational ‘bedtime’ post…

Mummagrizzlybear don’t like him much;  the good night punch to the face kind of cements that fate really. I don’t really like a lot about our evenings to be fair and I’m pretty certain that doesn’t help any of us. 

Biggestbruv is tucked up but been out of bed 3 times to check I’m ok because the screaming from littlebruv scares  him into dreading the worst, so he’ll drift off to sleep reassured by only my fake smile. He shouts out only to get me in to the room to tell me he loves me and in the heat of everything else going on I’m shit and only tend to him for the briefest of moments which in silent calmer moments I’ll reflect over and promise myself i’ll find a way to make it up to him … something that fellow bloggers have touched on in posts such as

https://pdaparenting.wordpress.com/2017/02/19/pda-thoughts-recognising-the-challenges-faced-by-siblings/
Meanwhile daddybear is doing the only thing he knows to work and that’s to lay with the pda’er until he reaches a level of calm despite my pleading for ‘us’ to ignore him given the violence and obscenities being hurled. Logically I know daddybear just wants peace to fall over the household and the sooner the better for all of us.. Irrationally, however, I’m angry that despite lashing out (& even though I accept that bedtime causes extreme anxiety and avoidance) he’s now being pandered to. Secondly I’m furiously concerned that neither of us know what we’re doing wrong, so I over-analyse our chosen tactics and fear that we’d be torn to shreds by any parenting expert. And thirdly all I keep wondering is how on earth are we supposed to determine if these new meds are helping?! What defines ‘things improving’?  

I’m tired and tomorrow is back to the dreaded school/work routine. Selfishly, I love my job, I love my ‘get out’ where I can put another hat on and focus on others. Well at least until recently I loved doing this. More recently this hasn’t been so straight forward for me and tonight I sit worried that my work- heart isn’t ticking the way it used to. Then there’s the school debacle. The taxi will come. He’ll either ‘compliantly go’ or with a fight; neither seems to influence whether or not he’ll have a good day and whilst I’m at work I’ll await a call from school or be distracted into researching something or other that might make things better. Amidst all of this I’ve another brave little man who will undoubtedly go off to school the conventional way trying his best to not be affected by whatever challenges are thrown into the mornings mix!

I started writing 2 hours ago. Since then I’ve taken my turn attending to the little monster who has gone through the  full range of emotions from full blown shitty and foul in his anger about bedtime to petrified and screeching in tears on hearing things that are not in his room. The only difference I’ve noted with the new meds is that the battle is a tiny bit shorter and there comes a point where he’s easier to reach out to and comfort… tonight he held my hand as I stood aside his bed reassuring him once more. And there it is… the most irrational part… with the tiniest sign of love and affection he’s forgiven, I’m mildly recharged and I’ve mustered the strength to keep going. I love him with all my heart and wish things could be different for so many hours a day…but in that moment… that very short few seconds I’d not change a thing, because those little connections with Roo are few and far between.

On his last ounce of strength he let out one more terrified scream and at my wits end I resorted to exactly the tactic (of daddybear) that drove  me potty only a couple hours earlier and so I scooped him up and I lay with him and with the help of meds and just a 2 hour battle he gives in to sleep… in my bed!

Upon reading it back I note I’ve already ventured into ‘whinging blogs’ which was not the intention, so without hesitation I force myself to recall 3 positives from the day (no matter how small) as these little glimmers remind me it’s not all doom n gloom!

☆3 positives of the day☆

1) Both boys enjoyed their rugby matches and we survived a family outing unscathed because at times we’re a frickin awesome team

2) Daddybear and I both said ‘yes’ to monopoly and for at least the first hour everybody enjoyed a technology free family game before an ‘erruption’ which was successfully navigated and overcome by a yummy chicken casserole (approved by all!)

3) Bags are packed, the ironing is done, the house is relatively orderly despite daddybear using every kitchen appliance and accessory to make homemade scotch eggs this evening… which are also yummy *but not slimming world friendly!