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First blog post  … “So, why am I here?”

Introducing the grizzly bear family

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I’ve been looking for a place to vent, a place to track my thoughts and offload some of life’s stresses and in the last few months I feel our little family has encountered more than our fair share of those stresses. I’ve taken comfort in finding and following blogs of inspirational fellow mumma’s and by fellow mumma’s I mean any of us who are just by chance still ‘winging’ it and getting away with it, or driven to maddness or drink (which ever comes first) and equally all those amazingly strong parents fighting for what’s right for their kiddos. I didn’t know I belonged to this community, but I do, and I fit in. My youngest son has a form of Autism (only diagnosed this January) and we’ve just now realised that we’ve all been guilty of trying to fit this little oddly shaped peg into the wrong shaped holes.

I should I suppose introduce us. I’m mummagrizzlybear, 32, mum to 2 fab lads and an outreach support worker for a domestic abuse charity. I love and live with daddybear, my husband of 10 yrs, he’s 35 and works in agriculture. The boys are 7 and 9. Bigbruv is just about text book & pretty much has been since pregnancy, this doesn’t make him any easier to raise but at least there’s always advice out there to help us mere mortal parents to navigate the joys of parenting boys. He’s really into sports, loves to be outside and secretly loves to please us, school isn’t his most favourite pursuit but he’s actually more intelligent than he gives himself credit for and most the time he’s a conformist! Then we have littlebruv who we affectionately call Roo. He’s never been anywhere close to being text book and the truth is I’ve struggled with this. We all hope our children will be individuals and put their own mark on the world but when you realise there are things that you don’t understand  about your child and then watch your child struggle it’s easy to find yourself asking why they cannot be just like the others? Roo loves lots of things bigbruv loves, he too enjoys anything active and being outside, he’s a mathematician wiz and has an eye for details… the littlest details! Roo also has PDA, which seems to be a form of Autism that few people know enough about, and even when you know a lot about it, it’s a really tough condition to live with.

Originally my intention had been to join the community blogging about PDA and the battle to get it understood and help our Roo-peg find a hole where he fits, and in doing so I thought I’d feel less isolated and lost but then I remembered my life isn’t just this… there’s more.

And so all I hope is that I find a release; if I also find others who get where I’m coming from then that would be amazing and if in sharing our ‘normal’ somehow helps another family to learn that they’re not the only ones going nuts then that’s even better!

My blog will inevitably contain ‘blips’…thats what we call parenting fails / PDA meltdowns / sibling wars / relationship cock-ups etc..please don’t judge! I plan to be honest and brutal because I want to capture everything real… everything, even the bits you wouldn’t want social services to hear (ha…yep, they’re part of our lives too now) but generally I’m an optimistic kind of person who is able to stick a positive slant on even the bleakest of life’s shit-bits and most of all I intend to keep the blog nanna-proof as though any relative could be tuning in at any moment so I’ll minimise my effing and jeffing!

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Mental Health and Special parenting

On mental health awareness day i’m reaching out to those not yet ready to ‘share’

Parenting for the most of us, is not plain sailing. It’s the biggest learning curve I’ve ever embarked on and the only thing I’ve ever looked back on and chuckled, ‘shit, I was so not ready for this’… But many of us ‘knew best’ and became parents anyway and some of us joined a special kind of parenting journey without a choice. Now I am not ‘blaming’ motherhood for mental health issues world wide, but I am sure as hell able to acknowledge in our household, where parenting stresses have played a part. Sure, there was a susceptability to mental health issues prior to becoming parents and there are other factors always influencing a persons stability, resilience and general wellbeing, but still MY KIDS, have a lot to do with my mental health! I’m fortunate enough to have a super support network, a reasonable knowledge about psychology, a passion for wellbeing and a weird sense of humour, so for me, my journey on the mental health rollercoaster is one where at least I have a harness. Others don’t. 

Today’s the day we see brave folk all over the media speaking out about the taboo topic of mental health. This is a great concept. I too have used ‘awareness’ days to test out what it feels like to share the cold hard truth. It was my own experience that got me thinking. I can remember years of seeing ‘braver’ mums than me sharing their pregnancy loss stories, lighting candles publicly in memory and connecting over social media about a heart wrenching topic that kept me silent and isolated. I remember dismissing the prospect of sharing my own story because, ‘it might upset my family’, or because I’d not know what to say if someone confronted me to talk about it, or simply because by sharing, I might just break, and somehow despite the hurt, I’d not yet shattered. These fears kept me silent. I’m sat here pondering just how many of us are keeping quiet in much the same way about the state of our mental health. Afraid that if we share it, we might just crack, or that our families might not be able to handle the stark truth or simply that despite it being mental health awareness day, we couldn’t possibly imagine how to talk about it face to face and reveal the chinks in our armour. We’d be more vulnerable right? 

Something shifted in me last year. I noticed what ‘not talking about it’ was doing to me. A vicious circle was feeding my isolation, for everyone capable of talking about it made me feel more inferior for having not found the strength. I’d berate myself for possibly not being as loving and compassionate as other mums. The anxiety I felt about speaking out ensured that I knew I’d just be “crying out for attention” if I began to help others see what pregnancy loss can be like. Noticing the trap I was in, I made a very conscious decision to “jump”. It’s a known habit of mine when I’m faced with something I fear. I either avoid it altogether and believe me I’m good at that… Or I jump straight in. There’s no dipping a toe with me. I’m a all-or-nothing kind of girl. So publicly I joined the masses with my lit candle and my story, raw and true. What I discovered at that point was not short of amazing. My isolation was undone… Instantly. For a whole evening I connected with similar stories, unique experiences and a sense of shared hurt, but it felt good. The only time my hurt had felt good. I didn’t even know it was possible. I do not now need to on a daily basis deal with being confronted about it face to face as I had feared I might. My family rarely bring it up but I know now that they have a better insight into how I was feeling and I am still in one piece, maybe even wholer as a result, perhaps ‘sharing’ was the glue I needed.

So today, on mental health awareness day, I urge anyone not feeling ready to share, to not berate themselves, your time will come, its a unique journey and if you are holding it together silently, simply knowing that you are not alone may be enough for you today. Perhaps next year, you’ll feel a little closer to being able to jump right in and connect, even with just one other person about your experiences. It doesn’t have to be public. Speaking out can be between just you and just one other. And if you are not an all-or-nothing kind of person, perhaps your journey to sharing will be in baby steps. That is fab too. Whether we jump or tiptoe, with mental health issues, there’s always a step forwards with ‘recognizing’ our symptoms. A further step forwards with ‘accepting’ (instead of dismissing) and a further mahoosive step, when we are ready, in ‘asking’ for help. 

Reducing the isolation that comes with forms of depression or anxiety is important to me. On a personal level I see parents in particular to be vulnerable, cautious about ‘showing’ their inadequacies or failings, needing to upload a perfect family shot to remind the world and themselves that they’ve got their shit together. If you’re a special needs family, that shot may be even harder to come by. On a professional level, im conscious of the impact that domestic abuse has on mental health and passionate about supporting people to work towards a more empowered position through the group work I do. The isolation is debilitating, whatever the cause. It is a vicious circle because in being cut off or not understood you learn to protect yourself by staying clear of those who just don’t get it, and so you are more alone and deeper into isolation. By being alone, you can feed your anxiety gremlin all it needs to keep you from ‘jumping’ and asking for help. Social media can be a bitch. But it can also be your saviour. I’m still trumping the #virtualvillage card… If your support network is small or non existent, find a forum where you can expand your village. Fill your village with positive influences, follow a blog, tap into online support groups countrywide, build your village with the support you need. You have the power to undo the isolation you might feel. Get connected, but in your own way. Raising awareness has huge plus points, but don’t let it overwhelm you today. Because, whatever your issue, you can reach out and connect anytime, anyway, when you are ready, your way. 

Mummagrizzlybear tips for today…

  • Recognize what your body is telling you
  • Practice accepting yourself for just who you are right now
  • Notice the ‘good’ and bank it in the memory jar
  • Move on from a ‘failing’ with as much kindness to yourself as you would afford others, mistakes are evidence of you trying
  • Set a small achievable goal each day and celebrate what you achieve
  • Offload. Lighten the burden in your head or heart. Write. Paint. Run. Talk. Whatever works for you
  • Give yourself the time you need without comparing your journey to others
  • Work on identifying your qualities
  • Accept that ‘good-enough’ is far healthier than perfect and allow yourself to be proud of doing your best
  • Do whats right for you today

    A visit from the scary side

    Night terror wakings are something quite extraordinary, they unleash a whole other persona

    If you’ve ever encountered a true night terror, you may have met those eyes. The strange and distant aloofness with tears welling, out comes the scary side.

    A breathless scream, a shout for mum, it sounds just like my son. But as I approach, without a doubt, I’m greeted by the other one.

    For you, on odd occasions, have another voice and look. I’ve met you only once in daylight, but of the night times I could write a book.

    Holding your hand for comfort but keeping back from smothering too, I’ll call for help from daddybear as mumma can see this isn’t her usual ‘Roo’.

    Often there will be no rhyme or reason, perhaps something startled your rest, supporting you when you’re in full flow has always been a real test.

    Your tearful plea asking for help, telling me you’re petrified, in a mix of sleep and wake you’re shaking, confused and unable to recognise.

    You turn your head in that horror movie way and utter words that make me shudder, I love you so desperately and seeing you like this makes me feel a bad mother.

    Without real understanding we seem to be past the worst, it could be illness, you might now rest, but at least tonight no one got hurt.

    Those eyes beg out ‘protect me’, “I don’t know who I am”. In those sleep dazed wakings I’m always worried if I can.

    Tonight you are safely back in bed and we’ve giggled through our reflecting, but night terror wakings always arrive when we are least suspecting

    Keeping calm and low key seems to help, we move you when we are able, anything we can to keep you safe, comforted and stable.

    Tomorrow you will not recall a thing, I’ve learnt to not raise the topic, it’s scary enough when it’s happening with not knowing how to stop it.

     

    Relentless

    Autism journeys can seem ‘relentless’ … a tired mummas poetic offering to connect with those who feel the same and those who we wish would understand… but its not all bad 💖

    As I pen a post that will help you see, just what these weeks have been doing to me, I’ve got a word that is stuck in my head, it sums up each day as I tuck into bed…

    Relentless

    Some days I’m ‘up’, I’m feisty and strong, then the next thing I know a day is too long. There is this word that describes the ‘fight’; the battle that continues far into my night…

    Relentless

    Each new ‘meeting’ is a rollercoaster ride, as one professional closes another arrives. The word that describes the feeling you get as fresh involvement once again needs the ‘history’ and scene set…

    Relentless

    The quirks, the noises, the rolling on the floor. The objections, avoidance, anxiety and much more. The word that should be added to Autism diagnosis, for parents to know what will challenge them most is…

    Relentless

    I can be proud of your achievements, no matter how big or small, but all success feels undone as we hit another brick wall. A word that explains the journey we are on, to get a child help from a council so withdrawn…

    Relentless

    The frustration inside that squirms like a sharp knife, reminding me I’m a mum to more than one and a wife. That word uttered often to describe the tasks of your day. Its simple, unchanging and depressing to say…

    Relentless

    Appointments, reviews, calls and meetings, where nobody knows what we should be achieving. I’ve got a word that makes me want to cry, I must attend though I want to run and hide…

    Relentless

    To look after children with all this info buzzing round my head, hold down a job, keep a home and not end up dead, is the definition I’d like added to sum up the word of forever begging and not being heard…

    Relentless

    A bedtime story and you ask “what’s wrong mum?” As we read I wonder what this word means to my son? “Relentless?” I ask with quizzical inquiry. “Unstopping” he says and we both are smiling. Gently I bid him all his sweet dreams, and for hours I ponder what ‘unstopping’ means.

    I had relentless shaped negatively in my brain. The thesaurus offered ‘unceasingly intense’ as the same. Now I think of my love, our care and devotion, aspirations and goals and our ‘keep going’ notions…

    I’m grateful for ‘unstopping’!

    #PDA Diary day 8

    A mummabears plea to the ‘team around my child’

    I wait at the window, waiting just to see, a glimpse of the boy I so wish to be happy. Have they kept you safe today? Have you held it altogether? Did you need your mummgrizzlybear to make anything better?

    I’m desperate for the the day to come, where you skip out of the cab, excited to tell me about the day you’ve had. If I can get the team around you to understand your needs perhaps this is an outcome in the future we will achieve.

    Preparing for the meetings I’ll exhaust myself with research, writing down my mumma-thoughts that might save you and I from new hurts. I know my son can do ‘well’, its not a myth, we see him do it, all I have to do, is ensure you get the conditions that let you thrive and show it.

    Keeping my anxiety at bay, is far easier said than done with the history that we’ve so far made. I hold myself accountable for squeezing for too long, our square shaped peg into the systems round holes but for you I will be strong.

    They will hear me for your sake. I will be much more than just ‘mum’. I will be assertive and demand what’s important for my son. The taxi will arrive and we will start a new, discovering what things, I need to help make right for you.

    I’ll remain calm and positive and try not to overwhelm, despite being hungry for the details to reassure my curious frown. We can take each difficulty as a learning curve today, and tomorrow I will educate them on your experiences and not dismay.

    I do not accept poor behavior from either of my children, I do however seek to understand their challenges and support them to overcome them. Today the report might be about language or lashing out, tomorrow I’ll request the ‘antecedents’ driving you to scream and shout.

    Heres hoping that tomorrow, we will agree the support that’s needed to make school life positive and for all involved to feel we’ve succeeded. The environment must be modified and natural consequences may be key, but until the system bends, this mother will fight relentlessly.

    I’ve played with you attentively, we’ve kept cool and burnt off steam, a heavy muscle work out in the garden really works a treat. I’ll try and transfer my knowledge to team that cares in school and believe me when I say this, they’d better not take me for a fool.

    I’ll power dress for confidence, arrive prepared and well slept, I’ll wipe the floor with airy fairy responses to my quest. I need the team around you to do more than understand, they have to get on top of things to let me release you from my hand.

    I’ve kept you close and supported you at home for a long and tiring summer, we’ve mastered new skills, grown and come to understand each other. From here on in, my new goal for you just has to be, to find a way to allow you to feel safe; safe when without me.

    Dear team around my child, please hear my plea. An education is important but there’s other things we need. Make it a priority to become a friend to my son, he’ll cooperate and ask for help if he trusts you like he does his mum!

    #PDA Diary day 3

    sometimes, one day rolls into the next….notice how ‘unschool’ days seem to produce easier outcomes for the grizzlybear family!

    I was wide awake til 1am researching approved ways to get the school and sen team to correctly analyze and understand the function of behavior. A task I realize now was probably pointless as why would they take advice from me?! 

    I’d emailed numerous professionals who had been or are involved in his case… Not at all expecting a response in the small hours!

    Between 1 and 6 I apparently did some version of sleep but if your soul is tired sleep is futile.

    Unschool-day 1

    Babybear joined me in bed apparently perplexed about what to wear on a ‘I-should-be-at-school-day’. Trouble averted, we agreed that joggers and flip flops could be entirely suitable for a fun filled learning with mum day at home. With my timetable prepared and a fall back plan in my pocket (should the shit hit the fan), we delivered biggerbruv to his school and promptly began our home-ed day. 

    Huge success with a full hour on angles. Remarkable retention of newly imparted mum-wisdom and happy faces all round as the 8 year old maths whizz conquered mathematical challenges one after the other. We took our agreed break, played a quick game and then I set him down to his ‘allowed’ TV selection of David Attenborough’s Planet Earth series as mummagrizzlybear had some assertive calls to make.

    By lunchtime I’d spoken to the senco, the autism support team and the Ed Psych amidst enduring a horrendous meltdown over the literacy task whilst simultaneously using my newly found paperwork to analyze the ‘functions’ of his behavior and still be a source of comfort to him so as not to put him through the same torture as he gets at school.

    We ALWAYS follow through one way or the other post meltdown. My best guess is that the majority of the destructive unwanted behaviours are a means of ‘escape’. I’m also 90% certain that there is a specific handwriting literacy barrier contributing to the issues faced at school. However, despite the meltdown and after the ‘right’ support was given to help him come down from the severe overreaction to the writing task, he did return to the table and complete the ‘poster’ all about him! 

    Day 3 ended in quite an unexpected way, whereby through the power of social media and the share of a picture on mummagrizzlybear’s Facebook page, a fellow mumma and dear friend knew I needed a break and swept in to offer me an outing and some much needed giggles and wine time. Tired and sporting fabulously greasy hair, I forced myself through the shower and felt refreshed as soon as I got in her car! Daddybear took the boys to their swim lesson and it went so well, the swim instructor text me whilst I was sat in a bar above the sea front, just to tell me how fab the boys were. 

    Red wine down the hatch, I’d giggled my way past the idea that I had no clue what I’d deliver to my support group the following morning at work, but in true mummagrizzlybear style I’d wing it and still be awesome! The benefit of some time out to chew the fat meant that despite the red wine headache the following morning, day 4 started with a decidedly less ‘burdened’ feeling. 

    Day 4. Unschool-day 2

    Super ‘wine’ friend also doubles as amazing ‘childcare’ support friend and allowed me to get off to work without a seconds stress about how she would cope with PDA’er. As is common for a lot of children with PDA, if our babybear is comfortable with the caregiver and trusting of them and reassured by their attention to the details that matter most, he will do us proud and can be a delight to be with. Why can’t school provide such an environment for him?

    The afternoon was a juggle of having CAMHS visit at home, grandparents unexpectedly swing by and trying to get out the door with biggest bruv to a secondary school open evening. 

    CAMHS had received my concerned email sent at silly o clock a couple of nights previous and his case coordinator had reviewed the situation with his psychiatrist. The outcome being that they could offer him additional medication if we wished to try a small dose of SSRI to see if that would help with his school related anxiety/meltdown issues. Neither the medical professionals nor us as parents favour the medication route and all agree that until the environment has been confirmed as having been suitably modified, we would steer clear of additional meds at this time. 

    Day 5 unschool-day 3

    Camhs called to confirm they had called an emergency meeting with the APA School but as the earliest the senco could make it was Tuesday, they’d advise not sending him back to school on Monday. Tough one, as babybear likes his routine and verbally is telling us he wants to go back to school. Changing the ‘plans’ as far as he’s concerned could do more damage, so despite the knot in mummagrizzlybears stomach we have contacted the school to agree that he will return as expected but that if ANY incident occurs, they are to call me for support until we gave had the meeting to discuss the things they need to be doing differently!

    I’m not even sure where the rest of day 5 disappeared to. Mummagrizzlybear was experiencing mega tiredness but still found herself for 2 hours on the side of a wet and windy rugby pitch that night before crashing out midway through a movie with daddybear (not unusual!)

    Day 6 

    Weekend plans as usual in the grizzly household were due to be frantic, with me needing to be in 3 places at once. However the pitiful weather made unexpected changes to our plans and instead the morning was smooth. Daddybear spent the morning fundraising with babybear in the local Morrison’s, despite the little PDA’ers original objections, he must have been superbly supported to conform and join in, so much so, that he even enjoyed helping to raise £1100 towards the rugby club. Good effort! Biggestbruv saw the mornings weather and tried to opt out of the secondary school taster session of surfing… However… We follow through with what we say we are going to do… And it sounded a more pleasant option to bag packing to mum a grizzly bear so we jumped out of bed, lined our tummy’s with a bacon bap and arrived at the stormy seafront equipped with my coffee, a good (forever unfinished) book and a folding chair!

    The rest of the day has been entirely rained off. We’ve wimped out of plans we had made and we’ve had our first Saturday at home (albeit just the afternoon and evening) just being at home! I’ve ignored the ironing and instead snuggled with movies. Biggestvruv has had his fix of the Xbox and daddybear and I both resemble the somewhat distant memory of the relaxed version of ourselves! Babybear struggled here and there with the lack of structure and pre-planned activities but he got the hang of chillaxing once more.

    Sunday plans start as every winter Sunday will, aside the rugby pitch so for now, its a glass of wine and cheesey x factor to complete our restoration before we start week 2!

    #PDA Diary Day 2

    Excluded

    So if you popped by for Day 1 you may have picked up on a couple of hiccups and a near-miss on the exclusion front. Every child needs a settling in period yes? Well 2 days was enough for the current setting before they too have followed suit and resorted to an exclusion to reprimand the behaviors they have encountered today.

    Mummagrizzlybear was once again astounded by the babybear stood before her in uniform, seemingly prepared for day 2 at school. We even negotiated eating breakfast much to my delight. Taking this as a signal that anxiety levels might be a bit reduced today, I followed through with the plan. We discussed expectations for the day ahead and we agreed the timetable of activities for when he’d be home in the afternoon. Off he went in the minibus, apparently in a good frame of mind after a good nights sleep. What more can a mumma bear ask for? Mumnagrizzlybear packed herself off to work, conscious that she MUST remember to get away early so as to get home on time to meet his cab.

    Babybear arrived home avoiding my gaze once more. A prepared, upbeat mumma, asked no direct questions but just searched his face for guidance on how his day had been. In a short space of time he volunteered that it had been an ‘OK’ day and he motioned his hand in that wavering kind of way we do when something was so-so. Hungry for clarification I teased the topics of best bits / worst bits into the conversation and babybear revealed he’d excelled in a reading test but struggled a bit again with the noise of his class mates. He went on to share this snippet of detail “I launched at someone and got in trouble but they’re OK and I just couldn’t help it”…

    With no call from school at that stage and seeing the sadness in his eyes I wimped out of confronting this admission head on. I uttered something along the lines of ‘you must not hurt people’ but quickly moved him on to his timetable to avoid the threat of another home-meltdown. The afternoon was calm. Even pleasant. 

    Just before dinner time mumma took the call. The call that for years I have feared and yet eagerly awaited each school day that passes. I do not want to hear bad news but I do need the adult perspective on events. I’d written myself a note and kept it in my pocket all day just in case a call had come early and caught me at work. The notes were to remind me to handle the next situation assertively and to not  just say an embarrassed ‘thank you’ when delivered difficult news. I’d recently been reminded of a lesson taught on an autism/challenging behavior course I’d attended which explained that all behaviors have a ‘function’. The #Autism discussion page on Facebook shared a series of PowerPoint slides that are worthy of a read by any family encountering perplexing challenging outbursts. 

    https://m.facebook.com/story.php?story_fbid=1509926455753516&id=123708701041972
    The call was from the teacher who was just as sorry to be the bearer of had news as he was yesterday. Our little PDA’er had today reportedly had another child in a headlock, attempted to strangle a child who was being restrained in crisis and hit a teacher. Thecresult was an unavoidable exclusion period. My prepared pocketed note allowed me to ask the following questions.

    • What did he believe my sons behavior was communicating?
    • What were the antecedents?
    • What would they prefer him to do in similar circumstances moving forward and how did they suggest we achieve this?

    The more assertive, more prepared mummagrizzlybear fought back tears and remained composed. We discussed the fact that for an entire 8 weeks nobody has been harmed or attacked by our son nor has any property been damaged. All of this I attribute to us successfully managing his environment with him and being available to him instantly for the required level of support (a tiring task). As I write this I can see the flaw. Although we had a successful summer he has yet to learn the skills he needs to manage without us manufacturing his world and being on hand to help him regulate. The poor teacher agreed that exclusion would not teach him more desirable behavior and would potentially cause them more work on his return on Monday next week as he will undoubtedly be angry and defensive. The teacher proposed meeting to discuss alternative sanctions that might be more helpful in the future such as isolation. My face lit up. That would be our little mans dream learning environment. 1:1 in peace and quiet. Sharing this with him, I practically heard the lightbulb flick on! He explained that as the decision had been made in this instance we would need to see it through. He went on to talk about desired behaviours so that children can ultimately return to their base schools. Informing him that he has obviously not yet been brought up to speed about our sons circumstances and his base schools refusal to ‘take him back’ felt a bit harsh. He was clearly floored so I offered him a lifeline and suggested that any negative experience could at least help us inform the forthcoming EHC Plan. I therefore ended the conversation with one final question for him. “What support would have made today a better experience?” He hesitated. Yabbered something about it depending on funding and then gave in to my persistence as I rephrased the interrogation to “if we had a magic wand, what does my son need to be able to access an education?” We concluded that a full time 1:1 is essential as is a designated quiet safe space to retreat to and support to develop more suitable coping strategies.

    In the cold light of day (or should I say night) and after a fairly catastrophic parenting fail of ‘arguing’ (and cursing for good measure) in front of the kids, daddybear and I attempted to redeem ourselves with a delicious home cooked family meal and by each offering our children 1:1 story time. Babybears tucked up and our talking done, I’m sad to say we are back to discussing the suitability of sending him to any kind of education setting whilst we await the appropriate ehcp. We’ve once again chewed over the financial concerns we have about me potentially needing even more time away from work if this pattern continues, let alone the cost to my wellbeing. But most importantly I’ve reflected over babybears teary words he uttered to me after having to discuss tomorrow’s educate at home plan. 

    “You don’t like me much mummy do you”

    Ouch

    In just 2 days I’m seeing the effects on his mental health. I’m questioning what we are sending him to school for? We already know in the APA environment he is not accessing a mainstream curriculum. I tell myself I send him to ‘learn’ the social skills he needs and those that I cannot teach him if I keep him here with me but the truth is I think this is my cover story. Numerous other reasons spring to mind, including the embarrassingly selfish ones such as, I send him so I can have a break!

    Check in with me for day 3 and find out how we get on tomorrow as I try to juggle being mumma and tutor and admin secretary making. contact with the senco, the autism support team and the disability social care team to name but a few!

    #PDA diary

    Day 1 … New (still temporary APA) school … Post-summer meltdown and progress with communication

    Babybear blew me away this morning as he boarded his transport to his new school. In his quiet ‘I’ve got this’ manner that never ceases to shock me he ‘coped’ with the anxiety he had about what his day would bring. He ‘coped’ with not knowing the driver or his new p.a. and the fact that they arrived 20 minutes earlier than they’d arranged. He ‘coped’ on discovering that he was no longer traveling alone as he were familiar nor with just one other child as he’d been informed but instead on a minibus collecting 4 kids en route. He managed. And for those seconds I was so proud. I wanted to get on board with him and hug him and tell him how much easier it was for mummagrizzlybear to pack him off to uncertainty without first having had to restrain him. I couldn’t though. I had to just let him go. 

    We’d had an extended summer holidays owing to a weeks exclusion at the end of term and the start of term being delayed whilst his new classrooms at the new site were finished being built. 8 weeks with barely a meltdown or a disturbed night and zero blips where he lost control so badly that someone was hurt or property trashed. We have ventured to new places, we’ve pushed limits, we’ve accomplished new things. We’ve shared in humour and used it to learn more about how Autism impacts on babybear, most notably he’s learnt a great deal this summer about idioms but also his coping strategies. With 48hrs left to starting the new school, babybear painfully started displaying all of the traditional signs of his extreme anxiety and features of his PDA that almost seemed to lie dormant over the summer re-emerged. 

    Firstly I noticed more of his shrieks, growls and roars unfolding at any moment that caused him frustration. Next he returned to more ‘toddler-like’ behavior, like throwing a himself on the floor when distressed. Most irritatingly he upped the need to be ‘attached’ to me, morning, noon and night (waking in the night too) and then today like someone has flicked a switch he is back to avoiding the most trivial of ‘demands’ like brushing his teeth and refusing to eat. (Demands that on a whole he has coped well with all summer long).

    I intentionally left today free. Planned in some self-care and got on top of some odds and ends at home taking it easy. He’s not at school a full day and I wasn’t entirely sure what time his taxi would get him home. The day flew by. I managed a short run, some food shopping, some housework and a quiet lunch to myself before he bounced back through the door. I’d worked all day in my head on what I would not do on his return. I would not ask him a billion questions. That always gets him stressed. I will not over stimulate him. I would not have anything string smelling cooking in the kitchen. I would not let him know how anxious I’d been. 

    Babybear avoided my eye contact as he came through the door. I somehow needed to see his eyes to determine if he was OK, so I turned his chin up for a sneaky kiss as if only to catch a glimpse of his eyes. He allowed me the briefest moment before wanting to address his needs. He asked for a drink, stating he’d not drank all day. I showed him the drink I’d put in his bag but he responded “you didn’t tell me it was there”… He wanted a snack and the iPad and I wanted to ask questions about his day! He humoured me and volunteered a few details. His taxi buddies, the names of his 3 class mates and that he’d made a passport today all about him and he had to tick things that he has done. He didn’t like eating with plastic cutlery, had a little ‘trouble’ with the noise in his class and his brothers arch enemy was now in the same APA as him and sharing his taxi!

    We’d collected biggerbruv from school and he’d gone off out with some friends to the park before things erupted. Babybear was struggling with frustration, gaming was causing horribly loud screams and he was obviously unsettled. I’d tried to set him up with a distracting game of solitaire, a non-competetive game of cards, at the table where I was sorting some paperwork. Quite unaware that he was about to blow, I insisted that he play alone instead of rising to his demand that I play with him. The cards went flying, my washing too, the recycling was kicked across the kitchen and he lunged for my paperwork attempting to rip it apart. Trying to remain calm, I directed the child monster to his room, spitting expletives he unravelled launching items around his room screaming about his window being locked but nevertheless he was contained and following at least one instruction!

    During his meltdown, his new teacher called to feedback on day one. Trained in diplomacy, he started with “he’s had some good moments today, he really has” … Oh but you could sense the BUT… He had complained a lot about the noise and taken himself out of the class numerous times in frustration which is against the class rules. He’d verbally been rude to adults. He’d punched another child in the face. The shit sandwich was sealed nicely with the news that they would not exclude on this occassion as he needed a chance to settle in. Choking back tears, I thanked him, whilst doubting that sending him to school was a good idea at all.

    Meanwhile babybear had simmered. He’d sussed I was on the phone to school. I went to his room trying to compose myself and think of ways to talk about things. Here, we had a breakthrough. On telling him that once we had finished having a chat he’d be clearing up the mess he had made, a tear trickled down his cheek and he said “I can’t make decisions after school, I don’t like choosing what to do and I can’t play on my own”…  Even when he has been a bugger he can emotionally floor me by showing me evidence of progress. He spoke so calmy and clearly that it was so easy to empathize. His communication was punchy and told this mummagrizzlybear just what she needed to hear. He told me what he needed help with…how amazing is that?! We collaboratively talked out a plan of how we could cope differently tomorrow. I reiterated my expectations for behavior at school. I broached the teachers review of the day and he denied any part in hurting anyone, having been restrained or having been rude to teachers. Does he actually black out?!

    The plan…

    Tomorrows after school agenda is mapped out in a timetable, some activities with mummagrizzlybear and some independent play, each with the timeframe I so hate to be bound by, that he finds so comforting. 

    Tomorrow morning I’ll remind him to eat and drink when he’s not with me.

    I’ll be specific about do’s and don’t’s (and keep my fingers crossed).

    Starting tomorrow I’m going to become more assertive when receiving school calls. His history tells us he NEEDS a quiet space, they have placed him in a class without an intervention room nor space to work alone uninterrupted. He NEEDS heavy muscle workouts and sensory breaks before meltdowns ensue. When his environment is well managed the summer has proven that he can cope with the right support – school need to suss out what he requires to avoid him losing it. I have to hand over the reigns and I need them to pick them up!

    Tomorrow, just like today, I will focus on what goes well, I will somehow switch my head to work mode from worry mode and I will keep building on the communication breakthrough .