Grieving and functioning … post diagnosis 

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


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

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

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

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

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

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

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

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

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

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

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

4) do I still consider myself to be functioning?

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

Jekyll and Hyde life

When you find yourself googling ‘how to relieve pain after strangulation’, I guess you could say things got pretty bad last week.

Ironically I’d just had a visit from the SCIP worker and uttered the fateful words ‘touch wood but things have improved’. Our meeting was useful and we discussed plans going forward and ideas about how to address the newest hurdles. Today’s topic was mostly about strategies to deal with our Pda’er and his ‘need’ to control me. The upshot being that it was about weaning him off me. Gradually showing him that he can spend short periods of time independent of mummagrizzlybear. 

PDA, as we know, creates severe anxiety where our son is driven to control pretty much everything and everyone as one of his coping mechanisms. Due to the past few months of stress, our son regressed, massively, and has been limpet-like ever since. It’s not comfortable for him or for me. In a strive to continue moving forwards I was hoping we’d develop strategies to help him see that he can ‘be’ without me, much like he used to be. He used to play independently and be comfortable with ‘free-time’, so I’m hopeful we can return to this instead of remaining in the state of needing 100% 1 to 1 attention 24/7! It needed to be baby steps and I’d take just 1 step at a time.

Step 1: set up activity to do alongside me

I’d agreed with babybear before he left for school that on his return, I’d have the playdoh out. I helped him find the toys he likes to play with and set myself up a task to do alongside him at the table. He asked me as he does a lot at the moment, to ‘play with him’, which loosely translates as sit here and do the things I tell you to. So I say, ‘mummy is going to do this paperwork here for 10 mins and then I’ll join you’. I keep to my word and join him, stating that I’ll build 5 of the cars he’s demanding I create, after which I’ll hang my washing up. At this point, he appeared to be managing and carried on playing independently. 

It was then that I heard the shriek. An out of control I’m losing my shit, screech, yelling about when would his brother be home because he’s bored and school should never have changed the times because now he has longer on his own etc etc. Queue the irrational Jekyll and Hyde type shift from calm to outraged. Seemingly unprovoked but evidently reflecting over the ‘changes’ he is unhappy with the monster errupted.

Mummagrizzlybear remained calm and feeling a sense of strength from the empowering hour or so with the scip worker, I refused to get sucked in and over react. Any mess can be cleaned up right? The playdoh was launched in great globs across the room and horrific screams erupted from him as he unravelled. Getting minimal response ( assuming this was for my benefit) he launched in to the expletives and more obvious destruction right under my nose. Without wishing to goad him I calmly reminded him that he’d be responsible for the clear up and suggested he head for his room where his sensory relief gadgets and gizmos might help. He was past being compliant or accepting my ideas and so the destruction continued. Refusing to engage in this (and ultimately feed his desire to have my undivided attention) I turned away and at that moment he saw red, running and placing both his hands around my throat from behind me and using real controlled force to squeeze my airway. I’m not sure why I didn’t struggle, possibly in fear that he’d accidentally go too far if I put up a fight? I don’t know? I’ve never been strangled before but somehow I stayed calm in an attempt to call his bluff I guess. Luckily it worked. He moved on to more destruction and I removed myself to safety, communicating to him that I was not prepared to be with him whilst he was out of control and reminding him to use his room as his safe space.
In a breakthrough moment he retreated to his room, I summoned strength to offer him reassurance and ensure he had the sensory resources he might need to calm. In time with lots of cursing (from him) and one attempt to flee the house, his tact changed to blame. “It’s all your fault” he was yelling, “you should have given me my medicine” and “you should have helped me”.  I realise in that moment that we forgot to give him his meds last night, could it seriously be connected? Wanting to restore a sense of calm control I offer him some medicine now and take the opportunity to ask him what it is that I could have done to have helped? He was refusing meds and claiming that he wished to stay ‘angry’ . This provoked a reaction from me. How could anyone want to behave like this? I remind him that he could have really hurt me. He cries out in a distressed way that it wasn’t him who did this. He was devastated to reflect over this and he began to talk of the things he’d broken too. Eventually, he takes some meds, spends 10 mins on his bean bag with a timer as a ‘time-out’ for the destructive and rude behaviour and then moves on to an apology. He was also directed back to all of the things he’d thrown or wrecked and ‘supported’ to put things right again. 

He was exhausted. Mummagrizzlybear was sore but in one piece. Bigger bruv had returned amidst the commotion too and was safe. A level of calm had returned. The baby step had been taken and the seed planted. He went on to manage a short period of time alone. 

Mummagrizzlybear wishes that it hadn’t of got so out of hand but feels that some gains have been made despite enduring brief strangulation! Calm parenting helps. Remembering not to get sucked in helps. Demonstrating self respect and maintaining boundaries helps. We achieved short moments of breaking away from the constant 1 to 1 he demands. We even shared a moment of true care and consideration whilst he was remorseful. Later that day we shared tenderness. Recognising what helps and what victories are made helps us all survive Jekyll and Hyde life. 

Today’s shift of mood, much like most others was seemingly unprovoked or at least unwarranted. The shift to irrational, volatile behaviour can be instantaneous and this sums up why he is currently not in mainstream nor managing the usual peer relationships one would expect of a child his age. Today’s physical outburst followed cuddles and kisses and a happy, calm homecoming from school. It’s this that tends to catch me off guard; all Mummygrizzlybear had suggested was that we would walk the dog. Although my first warning comes from him in the  shape of his growls and objections, when I continue to stand strong and not allow his threats of ill behaviour to manipulate the situation, he becomes quickly out of control and bubbles over into irate. In this state, he unleashes the verbal abuse, screeches and violence and when I retreat he’ll break or destroy things. 

Over years of learning, we’ve reached a point where eventually he can be guided to a safe space to calm and today, much like any other, in time he calmed and afforded me the apology and his explanation for his frustration. There lies the victory. In time we were out on a short walk with the dog. Where safe to, I believe in always seeing through the original plan, no matter how subtly, as it can reinforce the message that the outburst was ineffective and provides an opportunity for us to reflect on how ‘well’ the task had actually gone. Today the walk was short. Today I recognised that if I pushed for more we would not have had this outcome. 

I’m not certain which character I tucked into bed nor which character might wake through the night or greet us early tomorrow morning. But I do know that both characters are my son. My babybear. And whether calm or irate I love him. I’ve grown to know both Jekyll and Hyde and accept that little helps us predict which version we will encounter from one minute to the next. It’s dawned on me that not many other environments accept any person to be more than one personality. For most it’s too much uncertainty to handle. If you analyse the people with whom babybear appears to feel safe and content, I’d say that these people have all developed the skill to show him that it is ok for him to be whomever he is in that moment. I’m thankful that I can support others to appreciate that it is PDA that creates this and not wilful naughtiness. Punishment and rejection are damaging but onsequences and right from wrong can still be taught. Calm parenting helps. It’s not easy and certainly not always remembered but I’m human and to learn, I’ve had to get it wrong along the way. Luckily for me (I jest) PDA ensures that life remains unpredictable and the rules are constantly changing so I have ample learning opportunities! 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sorry seems to be the hardest word

Tips on saying ‘sorry’ – modelling to children

Being a big believer in humility, acknowledging faults and identifying areas we can improve on I was freshly inspired this morning to read this rather long but very worthy read on apologising.

I’ve of course been greeted with ample opportunity to introduce the 4 step principles with my baby bears all in one afternoon. Being children aka ‘sponges’ they’ll of course remember the 4 steps and I shall bask in my newly acquired ‘perfect parenting’ status for all of a few seconds…before I go bat-shit crazy once again! All jokes aside, when prompted, they both repeated the 4 steps I’d encouraged. 

If I’m honest I may have been intentionally ‘calmly communicating’ the 4 steps to my cherubs in the presence of daddybear hoping that he’d too take on board the principles. 

Sorry often goes unsaid or is misused to excuse or move on from negative behaviours even amongst adults. I want genuineness. I want to hear what is going to change as a consequence of any person admitting fault. I need to know that the ‘culprit’ knows what impact they have had. This is how I recognise sincerity in a decent apology. Yes. I’m making this harder. Yes. People will no doubt let me down until they develop this skill. But yes we all deserve genuine loving consideration and an apology should not be insincere or a ‘get-out’. 

As adults (in our relationship/ household we have 2 adults- supposedly) we can model effective caring communication to encourage babybears to do the same. The more it is witnessed by babybears the more likely we are as adults to see it. 

4 steps are:

1) direct the ‘sorry’ to the person by name

2) acknowledge what you did wrong. Show that you know how your behaviour affected them.

3) explain what you would do next time or how you could make things better. What will you do to improve the situation?

4) ask for acceptance of your apology

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.

Even good experiences can contribute to overload.

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

It Must Be Mum

By Rosie and Jo’s mum.

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

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

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

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

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

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