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.


Dear mum

A poem to ‘that’ mum

Dear special needs mum I saw your eyes, I know you were trying so hard to hide, to hide the hurt, the struggle, the pain, you see I know this because i’ve suffered the same.

Dear warrior mum who battles so strong, to ensure her children’s needs are met and they feel they belong, you fight for understanding, you fight for their rights, you’ll do this each day and long into each night.

Dear struggling mum who is torn between kids and work, stretched so thin without any obvious perks, striving to be a good role model, keep a happy home and of course being that trusty companion at the end of the phone.

Dear tired mum who gives so much care, has little support but will always be there, there for her cherubs, her family, her friends and continually giving because her love never ends.

Dear inspirational mum, the juggling goddess, managing your life’s hectic duties really does impress, you cleverly balance all that is demanded, from form filling to meetings and unexpected dramas, she makes it appear that nothing alarms her.

Dear thoughtful mum, who worries and fears, of the hurdles likely to follow in the next 5 to 10 years, always looking ahead, striving for better, preparing for change and softening any blows, without this where your children would be, who knows.

Dear under-appreciated mum holding back tears, sad from the battle you faced today but have handled for years, painting on that smile, constantly dusting yourself down, so bravely aware you’ll get no thanks but you must not reveal your inner frown.

Dear unnoticed mum, standing at gates, desperate for others to truly know your fate, ignored by many, shunned by some, because ignorance breeds and ‘special needs’ is more scary than fun.

Dear mum who knows best, and sees all the glory, of their special need children and are brave enough to share their story, to those mums who reach out to others, for those daring to speak out loud for those endeavouring to raise awareness, we are grateful for you in our crowd.

Dear insightful mum, who knows all the up- sides, of living with ‘difference’ and refusing to hide, to those mums embracing, educating, accepting, knowledgeable and ever learning, because of you, our children are blessed and safe and will never be left isolated or yearning.

Please don’t ever feel alone. Connect with me on Facebook if you’d benefit from support of any kind. I won’t have all the answers but you’ll not be alone and perhaps together we’d help each other discover a broader support network.

https://www.facebook.com/mummagrizzlybear/

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…

View original post 855 more words

Holding up the PDA- Mirror

A parents ‘uncomfortable’ acknowledgment of similarities shared with their PDA child

Mummagrizzlybear found this observation a little bitter.

It came into my awareness innocently enough, but the more I thought about it, the more sense I made of it. I remember once being told that the very things that irritate you about another person, may well be the very things that annoy you most about yourself, if you first allow yourself to look that honestly at you. I’d found a few occasions where this had materialised to be quite true when it comes to friends or relatives that had pushed my buttons – they were probably being a lot like me, or saying the things I’d have said or simply showing a side of them I found less attractive. We all have those sides. My unattractive qualities make a depressing read. Even my children have at (shittier) times been described as ‘just like’ (mum or dad – delete as necessary!)

So when I noticed my internal sulk over things recently having not quite met my expectation, I got to thinking, how often I explain away my babybears’ (less than delightful) behaviour on account of his experiences having not met his expectations.

With PDA in our house we notice the huge need for ‘things’ to remain in the control of the pda’er. Everything has to fall in line with how he expects it to go and where possible should be exactly as it once was before or at least how he envisages it to be. We all rely a little on ‘expectations’ but most of us are able to appreciate that a) things can and do change and b) that we have to be adaptable when the unexpected occurs. For our babybear with PDA these concepts cause physical pain and severe emotional distress. I too, now reflectively notice, that I was in discomfort over my experience…it really hadn’t met my expectation. I’ll give this some context and hang my head in shame for typing the words, but mothers day wasn’t all it was cracked up to be. There. Let the guilt trip begin! (And if Daddybear ever reads these posts, please know that I recognise your efforts and am in no way blaming any particular event…and I love you for trying to help us hold it together so we could pretend it was picturesque). Bluntness from kids, who quite frankly have this year mastered the skill of selfishness, was a little soul destroying…

“Mum, here’s your card, it’s rubbish but that’s all there was” (it’s an old (er)  lady (Mothers day) card!) and “We would have got you Forrero Roche but dad said £12 was too much, now can I go play on the play station?”  Happy Mothers day to me, Happy Mothers day to me….

There were moments that I looked on at them in admiration of the little spirited creatures I’d helped to create but I mostly took deep breaths and wished for something a little closer to either the adverts you see on TV or the posts my perfect friends were sharing on FB! I was extremely glad that I’d chosen this year to book to take my Mum and my Sister for a couple of hours at the Spa as gifts to both of them and had therefore also needed to book myself in too. There were a few hours of bliss, which I purchased and organised for myself.

So there we go. Sulk over. But classic example of my (unrealistic) expectations setting me up to feel rubbish. And it sucked. And my boy feels that (or something close to it) numerous times a day over things we just overlook. He expects the cereal to look the same in the bowl as the day before and his sandwich filling to be the same texture and smell as the day before that and the socks to feel comfy, and the taxi to come on time and the journey to be without delays and the routine to not be interrupted and for everyone to do as they said they would and for life to be ‘just so’… and it’s just not… and for this very moment, I get just how much that hurts inside of him. I understand his tears and his frustrations and his outbursts. I get it.

The lightbulb comes on and I can see why it hurts so much to see him struggling to cope when things are out of his control. I too do not like this. I do not like seeing in him the very response I guess my inner-animal would like to unleash when I do not get my own way! My parents would be laughing at this.

In fact that goes part of the way for justifying how I feel about PDA. Sure I have comes to terms with the ASD diagnosis but I resent the PDA part most. It is about the furthest thing from my expectation of what being a mum would be like. No wonder I struggle. I’ve read blogs recently pulling apart parents who take the diagnosis and somehow ‘make it all about them’…I’ve pondered why this felt so uncomfortable? I guess, much like the point raised at the beginning, there is a chance that the very bold statements made by such bloggers could in fact irritate me perhaps because there are similarities I am uncomfortable exploring? Maybe I admire these writers? I’m generally quite good at staying upbeat but PDA really has become my topic to vent about so there’s a good chance that those sorts of blog posts are actually hitting a nerve reminding me of the mum I said I did not want to become (*pictures looking in a mirror).

However, I stand by my belief that we are allowed to feel and experience exactly whatever emotions we have at any given time and that to truly move through ‘it’, we have to first name it, explore it and accept it. We can be warriors if we like but must remember that language is powerful and sometimes we set ourselves up for the ‘fight’ or a ‘battle’ when instead it could be a ‘compromise’ or a ‘discussion’ etc.

I’m sure I share many other similarities with my son and his PDA characteristics; my desire for an ordered within ‘my control’ life jumps to the top of my mind! They are of course traits that many of us have, but those with PDA have them to the n’th degree. I wonder how many of you fellow parents of children with additional needs can identify with this? Do you notice the things they find difficult and feel uncomfortable as you too struggle with the very same thing?

If we can take these snippets of awareness and use them to channel a better level of understanding and empathy we may be able to connect on an improved level with them when they are in crisis/meltdown? I’m hoping to learn to stop myself when I realise my own frustrations about his negative behaviours and ask myself: Can I relate to what he is finding tough? How do I (or would I) behave when I experience this?

Modelling coping strategies has been successful in our house when trying to help pda’er to practice new skills. I always introduce anything ‘new’, as something that I wanted to try out for me. I’m thinking I need to speak out loud more often about things not meeting our expectations. I need to model just how those of us with (adult) rational capabilities can work through and overcome situations that do not meet out expectations. I also want to find examples where things exceed our expectations and model how this too can be comfortable and a pleasurable experience, as our little man struggles with this side of things too…. hmmm..Do I?

As ever, I will find my best bits from the day as I believe on focussing in on the bits that go well…

3 positives

  1.  The sun stayed out for another beautiful day
  2.  Mummagrizzlybear managed a park trip with the urchins and did not lose her shit in public
  3. Feeling on top of the work diary / home life / appointments / meetings balance – hurrah… * pour yourself that glass of wine … you know from the bottle you purchased for yourself for mothers day!! Ha! Keep smiling…confuse the buggers.

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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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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