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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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The ‘Disney’ of schools

A school that will offer him things we could only have dreamed of.

I learnt the hard way about how lonely it can feel to get devastating disappointing news having not yet had the chance to tell everyone the unexpected good news. Nobody shares in your pain nor can comprehend your response because to the outside world you are behaving irrationally at best.

Not telling people I was expecting in 2013 before finding out I was then carrying a baby with no heartbeat has shaped me and scarred me, even in areas of my life which seem completely unrelated.

Today I share with you some terrific news. I share it with you, so that just in case the worst happens, I can also share with you my grief.

At a meeting today with our SEN Officers we virtually had it confirmed that our babybear will ultimately end up with a place at our dream provision for him. The only politics in the way of them explicitly stating that we will achieve this outcome for him is that the LA still have some paperwork and processes to go through and some of this commissioning work will not happen now until January. Cautious that I was getting too ahead of myself I asked whether in their opinion I should be making attempts to visit the ‘potential’ alternative provisions that had been identified as being included in the commissioning process. I started to get a bit giddy inside when they whitled them off the list, ruling them out for reasons such as distance or incompatible peer groups, until we were left with just our top requested provision! 

My Aunty referred to this place as the ‘Disney’ of schools owing to the way daddybear and I have described it to the family. We’ve certainly popped it up there on a pedestal and I’m more than aware that we are hanging all of our hopes on a place we know relatively little about! 

What we do know is how we felt being shown around. It is not a section 41 school and has a small cohort. Gaining a place here is notoriously difficult because the Local Authority can use the ‘not best use of public expenditure’ clause if they feel that they have a suitable alternative that might meet a child’s needs. It is hugely expensive to fund each child’s place at ‘Disney’ but the package that is subsequently available to them once you get them through the ‘gates’ is second to none.

Babybear is currently in year 4 and I’d say since year 1 my hopes and aspirations for him have been steadily dwindling with each and every educational barrier he has come up against. In the past 12 months I’d lost hope for his future. On meeting the Head at ‘Disney’ and being shown round a beautiful, warm and bespoke provision my visions for babybears future began to return. They got exciting. This place has such a fantastic ratio of highly qualified and knowledgeable staff to pupils alongside an amazing approach to learning that mummagrizzlybear couldn’t help herself but begin to dream of the possibilities if she could first get him a place there! Nothing is too much. They’ll tailor his curriculum opportunities in a very bespoke way, they have on site specialist therapists and amazing resources available. There’s specially designed spaces for interventions and tending to sensory needs but more importantly their approach to removing barriers to learning is more about ‘what more they can do as a team’ than it is about stating ‘what a child’s difficulties are’. Last year ironically the funded school trip was to Euro Disney. This year they’ve taken a group skiing. These sorts of activities feel beyond the realm of possibility for baby bear but for the first time in a long time I felt I was in the company of a genuine Head who was passionate about promoting independence and supporting children to achieve their full potential whilst reassuring parents that his team of staff are capable of meeting each child’s needs. The Head was not shy about the fact that the reason they can offer the sun and the moon is because a place here costs a great deal. He was also clear that our LA does fund placements but it tends to be to those who shout the loudest. Babybear will fit in here because they can cater for all different shaped pegs; their holes do not discriminate. To give my boy this chance I will shout!

The system thus far had put us in a position where we had depleted energy, reducing morale and diminished self esteem. You could say parents at that stage of the journey are quite likely candidates for giving up or worse. Unless there is something reminding you that your child is worth so much more, then it could be easy to accept the first proposal made by ‘professionals’. After all, they surely know what they are talking about?! Or, some ‘other’ child presumably deserves or needs that place more than your child?! We doubted ourselves at times that’s for sure but we are fortunate to have an amazing team around us comprising not just of professionals who have come to know babybear fondly but also reassuring tireless family and friends who keep our fires burning when our own coal supplies get dampened. We are blessed. We remembered that our son deserves the very best we can find for him and we chose to fight to ensure we provided him with the best chances of accessing that. This ‘fight’ has cost us but I’m proud to say that it has not beaten us. Those of you following the drama series of The A Word may have watched and shared in our discomfort as the on screen family struggled with the divisions that living with Autism can bring to relationships. What the recent episodes failed to present accurately was the journey families have to go on to get a ‘specialist placement’ commissioned… Ha…they succeeded from one episode to the next to move their son from mainstream to specialist school! 

I’d had part of this ‘good news’ delivered to us a few days ago but something was preventing me from celebrating. The reserved ‘don’t get carried away me’ pleaded internally for me to be cautious, reminding me of all the times that we had been let down before. Today I asked the questions I needed to and today I chose to allow myself to embrace excitement and celebrate the fact that my fight appears to have not been in vain. The tables are turning and I can now finally hear professionals and powers that be using my language and terminology, we now at last have a shared goal. They ‘get’ my son now. They know him but they also know how strong I am and that I will not back down.

Negativity attracts negativity. Today I turn away from this. Today I started looking forward to next year and I have faith that next year he will start at his ‘forever’ school. A school that will offer him things we could only have dreamed of.

… And should we receive devastating news that for some reason something changes, at the very least, our nearest and dearest and #virtualvillage will be aware of why we would be hurting and torn apart… And from that I take some comfort and return to being blissfully excited about what 2018 is going to bring! ☺ 

Too soon to celebrate? The ‘Panel’ change their mind.

Too soon to celebrate?
My absence has been noticed online by my #virtualvillage and in the real world. Friends have been gently checking in on me and tentatively teasing me out of isolation. For some weeks now I have been signed off from work and had felt so overwhelmed, I couldn’t find the space to write, (which is usually my tonic) let alone continue with my multi-tasking juggling act id become accustomed to.
In recent months, our local authority have been deciding the fate of babybear’s education. He remains currently in an APA and is dual registered with his ex-mainstream. With had heaps of hiccups along the way but controversially, I’d say, he was happy where he is right now. Many parents in this county and further afield petition for APA’s to not be used for children diagnosed with Autism, and whilst I’d agree that they are not specifically set up to meet the needs of children with ASD, in our case, we have been extremely fortunate to find a team of staff very well equipped with knowledge, patience and perseverance. Babybear ‘enjoys’ the APA. He was excluded from mainstream 12 months ago. In his current setting he has the luxury of a high ratio of staff to pupils, very small class numbers, very bespoke responses and interventions suitable to his sensory needs and is still accessing a predominantly mainstream basic education alongside a nurturing alternative provision of outdoor pursuits on a weekly basis. Babybear sees that secondary aged children are also at his provision and in an ideal world, he thinks it would be fantastic to stay there long term. We have made it no secret though, that he will not be able to remain there and that we are looking for his ‘forever’ school.
Whilst he has been at the APA, his EHCP has been applied for and for anyone who has yet to go through this process or perhaps encountering the start of this journey themselves, please be prepared to push and fight for what is right. The LA’s have guidelines and timescales to adhere to but are not made accountable if they do not do so. As parents we are encouraged to believe that none of the decisions made are about budgets but when you read between the lines, it is heart wrenchingly plain to see that money is considered much more often than a child’s needs. Despite the pain staking length of time it has taken us to get to this point, I consider us quite ‘lucky’. We had the EHCP request for assessment accepted straight away – this was before the summer holidays. The necessary reports were collected and as parents we felt relatively involved in the process. The paperwork gets sent to an infamous ‘panel’ – the decision makers – a group of people who have never met our babybear and have ever tried to support him, but nevertheless, they hold the cards…and the purse strings. Leading up to this our TAC meetings had been getting quite heated as unlike many children at the APA, we have never had an exit strategy in place for him. Firstly, this was because his ex-mainstream had said they would never take him back (but had failed to find justification to permanently exclude him I might add!) and therefore we were awaiting the result of the EHCP to further inform us. Secondly, none of the professionals involved in his case seemed to want to put their neck on the line and actually specify exactly where they felt his needs could be met long term. It had become a bit of a stand-off and no amount of us asking direct questions gained us the guidance we were seeking. The APA finally conceded and shared that they could not see our boy returning successfully to mainstream and that it might be best if we started considering specialist provision for him. No matter how much you prepare yourself for that news, it still comes as a bit of a hard pill to swallow and I guess this is why no one wants to be the bearer of this news. However, it also comes as a relief, when a professional is able to back up the very notion that you have held in your heart unspoken for such a long time. Regardless of my aspirations for my son, I knew I could not imagine a mainstream school where he would fit and over the past 12 months I have learnt to stop trying to force him into the wrong shaped holes. So, off we go, making appointments to view specialist provisons, so that as and when an EHCP was drafted, we could make an informed choice about our preference for him.
During our quest to find the right school, we considered smaller mainstream settings, mainstreams with ARB’s attached and council funded specialist settings. We deliberately avoided settings that we had already decided would not be right for our son, such as placements that were predominantly for children with learning disabilities. In our county, this left us with very few options as we also wanted to take into consideration the practicalities of distance and travel. In previous years I’d also heard about a school that I understood to not be part of the local offer, I didn’t fully understand what exactly it was but every time I mentioned the name to professionals to enquire about it I noticed a sharp intake of breath and a patronising, sympathetic smile on their faces. I’d previously contacted this school when I was desperate earlier in the year when our son was without a provision at all and had been told that it wasn’t even worth them giving me any details because they were full and did not see that likely to change. Something, however, pushed me to contact them again and bugger me, but on that very day that I called, they had just received the news that they were being commissioned to provide a further 10 spaces and would very much like to show us around and discuss our son’s needs with us. Visiting this school deserves its whole own blog post. I’ll save you the finer details but we were blown away and now very clear about why this school did not routinely fall into the local offer. It was exceptional and extortionate all at the same time. However, the Head was very supportive and informative and explained that all of the 35 children he had at his school are currently funded by our council despite the price.
Fast forward a few weeks and the ‘panel’ make their first decision. Last thing at night I received the call to share with me the news that the panel felt that babybear should return to mainstream with substantial support. In a haze of fear and confusion I scribbled down the comments that the SEN Officer was spouting off about ‘units’ and support and then stunned I write the words ‘return to base school’… Return to the very school which failed him so badly? Return to the school which have ousted us and refused to engage in any contact with us? Return to the school where he was shut in small rooms, misunderstood and neglected? I f*cking well think NOT! Excuse my language, but on that night my inner grizzly crept out of the cave and refused to lie back down. Amazingly I stayed completely calm on the phone, wrote down what I could and carried on dishing up the evening meal as though nothing had happened. Inwardly I processed the news, confused by the elation that they agreed he needed an EHCP and were sending me a draft and fuming that they’d presented me with the next stage of the fight. In the weeks that followed we received his draft and went about organising several meetings with the professionals who know him best to discuss the next steps. All involved agreed that he could not return to his base school and everybody seemed to have a little more fight in them. We prepared our representations about the draft and sent them back along with reports and supportive letters from professionals. At this stage we made it clear that we were requesting the exceptional and extortionate school for babybear and we detailed our reasons why. Unsurprisingly the LA did not agree but instead decided that in light of the additional information, the case shold return to the decision makers, the infamous panel to be reviewed again. Tick tock tick tock, skip forward a few more weeks and I am sat with a social worker (due to complete an assessment) when we take a further call about the outcome of this panel review. The SEN Officer shared that the panel now agreed that he could not return to his mainstream base school and instead the panel recommended a specilaist bespoke package of provision on a 1:1 basis with a view to him transitioning back to mainstream in the future. They had not yet edited his EHCP but still wanted to forward this to the recommended provision to initiate the next steps. I refused them my consent on the grounds that I knew nothing about this bespoke provision and felt strongly that if they were going to send anything, it needed to be an agreed plan which accurately described his needs. In the weeks that followed, we were promised the updated version of his plan and I attempted to make plans to visit the recommended provision. We had many meetings and discussions with the team around babybear about the recommendations and I was also put in touch with a parent who has a son who had attended this place. Our findings confirmed our fears and once again we set about making our representations clear. As I write about these weeks what I cannot adequately portray is the heart ache and anguish we went through, tirelessly attempting to be the voice of my son, endlessly arguing his case and attempting to gather evidence and a clear argument to take back to the SEN team. During these weeks we received news that the social worker assessment had concluded that we were not going to be eligible for the support she had implied we could get in the form of direct payments to recruit a PA for a few hours each week. She had instead decided that we were only in ‘crisis’ per se because the ‘education provision’ had yet to be resolved and that once this had been addressed we would all be ok. Agreed. We might. But could they do anything to support us in getting this resolved? No! We accepted a one off grant, which in effect felt as though they were paying us off and they closed our case. In the meantime, in the background, my own wellbeing had taken such a dive, I’d gone through the painful process of deciding to resign from my job so that I could be less stretched, more available and focussed to support the needs of my family.
In the weeks that followed the LA backtracked on their most recent ‘decision’ and instead communicated that babybear had not been identified as needing a specialist placement just yet and instead he could either access the bespoke 1:1 package or stay where he is at the APA with the view to reviewing things again next year when they hoped he might be able to transition back to mainstream. *Bangs head on wall!* With the apparent laid back approach of our LA, it appeared we were getting nowhere fast in resolving our differences. A meeting was scheduled for the SEN Team to meet with us at the APA to discuss the way forward. As far as I could see the main problem was that we did not have a shared goal for my boy. I felt they did not fully understand him, his needs or his history and I certainly did not feel that they were prioritising his wellbeing. They failed to provide us with a copy of his amended draft plan despite putting it in writing that we would have it by a certain date. Our local MP wrote the council but got no response. CAMHS requested an emergency professionals meeting but no one responded. The APA felt that the suggestions on the table were not suitable but didn’t feel able to challenge the LA. Days and weeks just kept passing without any info from the SEN Team at all. So I penned the longest complaint letter I have ever written. I started at the beginning and finished at “I would like you to forward me the finalised plan so that I can take this to appeal”. I included every failing I cold recollect throughout his time in education and I presented them with some very clear questions such as “If the LA believe my son is able to transition back to mainstream what are you proposing you do to make this possible and what change do you endeavour you will see by the next review that will determine you are right?” I also told a white lie about having had to cancel an appointment with our solicitor because they had failed to provide me with the edited EHCP as promised – not entirely untrue – I just didn’t make the appointment yet because I haven’t got the plan to take with me. I asked them why my son could not have a place at the school of our choice despite this provision being very clear that they have space and can meet his needs. I asked them why they felt my son should have to endure more waiting and inappropriate provision when there was a perfectly suitable placement available. I emailed this letter to the Head of SEN.
In the hours that followed I had a response. Firstly an acknowledgement of my emailed letter, promptly followed by a message to say she would look into the matters I had raised and get back to me that week. I also took a call from our SEN Officer who apologised for having not yet sent me the promised plan and instead revealed that she was still working on it and awaiting further details from her seniors. She did however suggest she would call me each day with an update from now on. Two days later I get an email to explain that an emergency review meeting had been scheduled for the panel to reconsider all of the information they have so far about babybear and that they would update me by the end of the day. In the hours that followed the SEN Team contacted our CAMHS worker and the APA for clarification on many points and then they made the call to me, late Friday evening before they shut up shop for the weekend.
“We are calling to let you know that given all of the additional information you have provide us with and having spoken to the team that know him best, the panel now feel that a specialist placement should be commissioned for him and that on this occasion the school of your choice will be included in the commissioning process….”
I didn’t do cartwheels, I didn’t say thank you, I stayed calm and tried to take it all in. Had a finally got somewhere? Have I been heard and taken seriously?
For those of you in the know, this is still not a cut and dry outcome. The commissioning process here means that the SEN Team will write a brief anonymous profile about my son and forward this to the available specialist provisions (I’m not clear whether all of the specialist provisions in the county will get this by default or whether just the ones with spaces will be sent this). The provisions can then respond if they feel they can accommodate him at their school. Effectively, my son is put out to tender. I’m told the process can take around 7 weeks and that they will not be ready to send the documentation until January. As part of our meeting next week with the SEN Team I will seek to get clarity about this process and the next steps and will update you all as soon as I am better informed.

My absence has been noticed online by my #virtualvillage and in the real world. Friends have been gently checking in on me and tentatively teasing me out of isolation. For some weeks now I have been signed off from work and had felt so overwhelmed, I couldn’t find the space to write, (which is usually my tonic) let alone continue with my multi-tasking juggling act i’d become accustomed to.

In recent months, our local authority have been deciding the fate of babybear’s education. He remains currently in an APA and is dual registered with his ex-mainstream. With had heaps of hiccups along the way but controversially, I’d say, he was happy where he is right now. Many parents in this county and further afield petition for APA’s to not be used for children diagnosed with Autism, and whilst I’d agree that they are not specifically set up to meet the needs of children with ASD, in our case, we have been extremely fortunate to find a team of staff very well equipped with knowledge, patience and perseverance. Babybear ‘enjoys’ the APA. He was excluded from mainstream 12 months ago. In his current setting he has the luxury of a high ratio of staff to pupils, very small class numbers, very bespoke responses and interventions suitable to his sensory needs and is still accessing a predominantly mainstream basic education alongside a nurturing alternative provision of outdoor pursuits on a weekly basis. Babybear sees that secondary aged children are also at his provision and in an ideal world, he thinks it would be fantastic to stay there long term. We have made it no secret though, that he will not be able to remain there and that we are looking for his ‘forever’ school.forever

Whilst he has been at the APA, his EHCP has been applied for and for anyone who has yet to go through this process or perhaps encountering the start of this journey themselves, please be prepared to push and fight for what is right. The LA’s have guidelines and timescales to adhere to but are not made accountable if they do not do so. As parents we are encouraged to believe that none of the decisions made are about budgets but when you read between the lines, it is heart wrenchingly plain to see that money is considered much more often than a child’s needs. Despite the pain staking length of time it has taken us to get to this point, I consider us quite ‘lucky’. We had the EHCP request for assessment accepted straight away – this was before the summer holidays. The necessary reports were collected and as parents we felt relatively involved in the process. The paperwork gets sent to an infamous ‘panel’ – the decision makers – a group of people who have never met our babybear and have never tried to support him, but nevertheless, they hold the cards…and the purse strings. Leading up to this our TAC meetings had been getting quite heated as unlike many children at the APA, we have never had an exit strategy in place for him. Firstly, this was because his ex-mainstream had said they would never take him back (but had failed to find justification to permanently exclude him I might add!) and therefore we were awaiting the result of the EHCP to further inform us. Secondly, none of the professionals involved in his case seemed to want to put their neck on the line and actually specify exactly where they felt his needs could be met long term. It had become a bit of a stand-off and no amount of us asking direct questions gained us the guidance we were seeking. The APA finally conceded and shared that they could not see our boy returning successfully to mainstream and that it might be best if we started considering specialist provision for him. No matter how much you prepare yourself for that news, it still comes as a bit of a hard pill to swallow and I guess this is why no one wants to be the bearer of this news. However, it also comes as a relief, when a professional is able to back up the very notion that you have held in your heart unspoken for such a long time. Regardless of my aspirations for my son, I knew I could not imagine a mainstream school where he would fit and over the past 12 months I have learnt to stop trying to force him into the wrong shaped holes. So, off we go, making appointments to view specialist provisions, so that as and when an EHCP was drafted, we could make an informed choice about our preference for him.

During our quest to find the right school, we considered smaller mainstream settings, mainstreams with ARB’s attached and council funded specialist settings. We deliberately avoided settings that we had already decided would not be right for our son, such as placements that were predominantly for children with learning disabilities. In our county, this left us with very few options as we also wanted to take into consideration the practicalities of distance and travel. In previous years I’d also heard about a school that I understood to not be part of the local offer, I didn’t fully understand what exactly it was but every time I mentioned the name to professionals to enquire about it I noticed a sharp intake of breath and a patronising, sympathetic smile on their faces. I’d previously contacted this school when I was desperate earlier in the year when our son was without a provision at all and had been told that it wasn’t even worth them giving me any details because they were full and did not see that likely to change. Something, however, pushed me to contact them again and bugger me, but on that very day that I called, they had just received the news that they were being commissioned to provide a further 10 spaces and would very much like to show us around and discuss our son’s needs with us. Visiting this school deserves its whole own blog post. I’ll save you the finer details but we were blown away and now very clear about why this school did not routinely fall into the local offer. It was exceptional and extortionate all at the same time. However, the Head was very supportive and informative and explained that all of the 35 children he had at his school are currently funded by our council despite the price.

Fast forward a few weeks and the ‘panel’ make their first decision. Last thing at night I received the call to share with me the news that the panel felt that babybear should return to mainstream with substantial support. In a haze of fear and confusion I scribbled down the comments that the SEN Officer was spouting off about ‘units’ and support and then stunned I write the words ‘return to base school’… Return to the very school which failed him so badly? Return to the school which have ousted us and refused to engage in any contact with us? Return to the school where he was shut in small rooms, misunderstood and neglected? I f*cking well think NOT! Excuse my language, but on that night my inner grizzly crept out of the cave and refused to lie back down. Amazingly I stayed completely calm on the phone, wrote down what I could and carried on dishing up the evening meal as though nothing had happened. Inwardly I processed the news, confused by the elation that they agreed he needed an EHCP and were sending me a draft and fuming that they’d presented me with the next stage of the fight. In the weeks that followed we received his draft and went about organising several meetings with the professionals who know him best to discuss the next steps. All involved agreed that he could not return to his base school and everybody seemed to have a little more fight in them. We prepared our representations about the draft and sent them back along with reports and supportive letters from professionals. At this stage we made it clear that we were requesting the exceptional and extortionate school for babybear and we detailed our reasons why. Unsurprisingly the LA did not agree but instead decided that in light of the additional information, the case should return to the decision makers, the infamous panel to be reviewed again. Tick tock tick tock, skip forward a few more weeks and I am sat with a social worker (due to complete an assessment) when we take a further call about the outcome of this panel review. The SEN Officer shared that the panel now agreed that he could not return to his mainstream base school and instead the panel recommended a specialist bespoke package of provision on a 1:1 basis with a view to him transitioning back to mainstream in the future. They had not yet edited his EHCP but still wanted to forward this to the recommended provision to initiate the next steps. I refused them my consent on the grounds that I knew nothing about this bespoke provision and felt strongly that if they were going to send anything, it needed to be an agreed plan which accurately described his needs. In the weeks that followed, we were promised the updated version of his plan and I attempted to make plans to visit the recommended provision. We had many meetings and discussions with the team around babybear about the recommendations and I was also put in touch with a parent who has a son who had attended this place. Our findings confirmed our fears and once again we set about making our representations clear. As I write about these weeks what I cannot adequately portray is the heart ache and anguish we went through, tirelessly attempting to be the voice of my son, endlessly arguing his case and attempting to gather evidence and a clear argument to take back to the SEN team. During these weeks we received news that the social worker assessment had concluded that we were not going to be eligible for the support she had implied we could get in the form of direct payments to recruit a PA for a few hours each week. She had instead decided that we were only in ‘crisis’ per se because the ‘education provision’ had yet to be resolved and that once this had been addressed we would all be ok. Agreed. We might. But could they do anything to support us in getting this resolved? No! We accepted a one off grant, which in effect felt as though they were paying us off and they closed our case. In the meantime, in the background, my own wellbeing had taken such a dive, I’d gone through the painful process of deciding to resign from my job so that I could be less stretched, more available and focussed to support the needs of my family.

In the weeks that followed the LA backtracked on their most recent ‘decision’ and instead communicated that babybear had not been identified as needing a specialist placement just yet and instead he could either access the bespoke 1:1 package or stay where he is at the APA with the view to reviewing things again next year when they hoped he might be able to transition back to mainstream. *Bangs head on wall!* With the apparent laid back approach of our LA, it appeared we were getting nowhere fast in resolving our differences. A meeting was scheduled for the SEN Team to meet with us at the APA to discuss the way forward. As far as I could see the main problem was that we did not have a shared goal for my boy. I felt they did not fully understand him, his needs or his history and I certainly did not feel that they were prioritising his wellbeing. They failed to provide us with a copy of his amended draft plan despite putting it in writing that we would have it by a certain date. Our local MP wrote the council but got no response. CAMHS requested an emergency professionals meeting but no one responded. The APA felt that the suggestions on the table were not suitable but didn’t feel able to challenge the LA. Days and weeks just kept passing without any info from the SEN Team at all. So I penned the longest complaint letter I have ever written. I started at the beginning and finished at “I would like you to forward me the finalised plan so that I can take this to appeal”. I included every failing I cold recollect throughout his time in education and I presented them with some very clear questions such as “If the LA believe my son is able to transition back to mainstream what are you proposing you do to make this possible and what change do you endeavour you will see by the next review that will determine you are right?” I also told a white lie about having had to cancel an appointment with our solicitor because they had failed to provide me with the edited EHCP as promised – not entirely untrue – I just didn’t make the appointment yet because I haven’t got the plan to take with me. I asked them why my son could not have a place at the school of our choice despite this provision being very clear that they have space and can meet his needs. I asked them why they felt my son should have to endure more waiting and inappropriate provision when there was a perfectly suitable placement available. I emailed this letter to the Head of SEN.

In the hours that followed I had a response. Firstly an acknowledgement of my emailed letter, promptly followed by a message to say she would look into the matters I had raised and get back to me that week. I also took a call from our SEN Officer who apologised for having not yet sent me the promised plan and instead revealed that she was still working on it and awaiting further details from her seniors. She did however suggest she would call me each day with an update from now on. Two days later I get an email to explain that an emergency review meeting had been scheduled for the panel to reconsider all of the information they have so far about babybear and that they would update me by the end of the day. In the hours that followed the SEN Team contacted our CAMHS worker and the APA for clarification on many points and then they made the call to me, late Friday evening before they shut up shop for the weekend.
“We are calling to let you know that given all of the additional information you have provide us with and having spoken to the team that know him best, the panel now feel that a specialist placement should be commissioned for him and that on this occasion the school of your choice will be included in the commissioning process….”

I didn’t do cartwheels, I didn’t say thank you, I stayed calm and tried to take it all in. Had a finally got somewhere? Have I been heard and taken seriously?

Will we get him the school of our choice?thEC66OTXX

For those of you in the know, this is still not a cut and dry outcome. The commissioning process here means that the SEN Team will write a brief anonymous profile about my son and forward this to the available specialist provisions (I’m not clear whether all of the specialist provisions in the county will get this by default or whether just the ones with spaces will be sent this). The provisions can then respond if they feel they can accommodate him at their school. Effectively, my son is put out to tender. I’m told the process can take around 7 weeks and that they will not be ready to send the documentation until January. As part of our meeting next week with the SEN Team I will seek to get clarity about this process and the next steps and will update you all as soon as I am better informed.

I was going to sum these past couple of months up as a rollercoaster ride, a term I’ve used previously thinking it quite apt to describing the ups and downs but today I sit here somewhat mournful despite this so called good news… We choose to get on a rollercoaster and I have not chosen this path for my boy. We enjoy the thrill of the ride and if not, we choose not to ride again… I do not have the luxury of opting to not ride the next bout of ups and downs that the LA may throw my way and I have certainly not enjoyed fighting for a childs basic rights. This is not a rollercoaster. There are no smiley theme park attendants pressing stop and go. Its a maze at best and not an enjoyable playful kind; this maze has tall dark hedgerows that you cannot climb to see a clearer path and the maze is lined with traps. Traps that some families will and do fall into. Pits from which they simply find it too hard to get back out from. I’m sad for those still trapped. I’m sad for those without the energy to keep fighting. I’m sad for the children let down by ‘systems’ not fit for purpose.

This is a good news post and I am in a good place. Its just that by being here I am more aware of those still struggling to reach a point of victory, a small glimmer of hope, a moment where they too feel heard and understood. I’ve felt resentful reading other peoples good news stories and chastised myself for feeling that way, but it hurts when you are stuck in the maze with no lights to guide your way, so if you are reading this and feeling truly stuck, I genuinely hope that we might be able to help you navigate through whatever stage of the maze you are in. The one thing I am realising is we are never alone as we may feel. There are so many families in these mazes. Reach out. Build up your #virtualvillage. Ask for help or advice. Take one positive story as the fuel you need to drive you on. Let any anger, bitterness or sadness become your motivator. You are enough. You can do this.

What are YOUR kids sending?

We need to work as a team in our community to promote the best from our young people… No parent should be being singled out as the only strict one. 

Shock horror… Another post about SAFETY… But I seriously am shocked by what I am reading and I’m questioning whether other peoples young people are frivolously getting away with communicating with their peers without any monitoring?

At what age does that become OK?

Mummagrizzlybear usually uses this blog predominantly to offload about her childs SEN/disability  experiences and the topics can be somewhat controversial if not at least thought provoking. There is only a small audience and the writing is mostly for a therapeutic release and to connect with the #virtualvillage of a support network. However, today is different. Today I want to write with the aim of the post being shared far and wide to bring fellow parents and schools together to address a growing concern. 

Our children today are ‘growing up’ with far more at their fingertips than we ever had accessible. Whatever your families personal reason or justification for your child/tween or teen having the means to communicate via technology, we as parents need to recognize our role, rights and responsibility around granting the young person this priviledge.

The 3 Rs.

It is a parent/adults ROLE to teach their young person about using devices safely. Talk and show their young person how to keep safe. Help the young person understand legalities and master the unfathomable concept that once they have ‘sent’ something it is out there forever and no longer their property! 

It is the parent/adults RIGHT to monitor and protect their young person. Whether we are accused of over protective parenting or not, we have a right to balance privacy with protection. We are caregivers not best friends. Best friends might ‘cover up’ the wrong doing of a pal, caregivers show they care by taking an interest, giving guidance and setting boundaries. Set some parental controls.

It is the parent/adults RESPONSIBILITY to ensure that their young person is operating in a respectful manner in line with rules and regulations. Age restrictions are in place for a reason. A parent overlooking these is simply communicating that rules do not have to be adhered to and subsequently putting their child at risk of being vulnerable. It is a parents responsibility to protect their own child and the others their children are communicating with.

Mummagrizzlybear is a self confessed winging-it parent. I do not profess to have all these parenting issues nailed but I’m passionate about raising my babybears to become decent, respectful and competent adults. My work role often intertwines into my parenting style. As a counsellor I’ll promote ‘communicating’ and listening and as a domestic abuse specialist I’ll advocate ‘healthy relationsips’ and absolutely educate young people about unhealthy ways of operating. I can therefore not just sit with the knowledge that young people in our community (and every other village and town) are sending disgusting messages. I have chosen however to not name-and-shame these young people as I believe that would be just as abusive. Instead lets increase awareness and talk more about tge taboo… I do believe these young people need further guidance and supervision and I believe it is our job as parents to provide this. These young people cannot be stereotyped… They are from every type of family background you can imagine. They include the children you picture as trustworthy as much as the story tellers. The children you know to be reliable as much as those who are terribly misguided. The children who have parents with high expectations as much as those who are neglected. It is potentially all of our children. As they grow, they are learning and testing out their own boundaries as well as those of their caregivers and people in authority. We need to work as a team in our community to promote the best from our young people… No parent should be being singled out as the only strict one. 

Some things some adults haven’t even grasped… Do your children know that…?

Once a msg has been ‘sent’ it can never fully be deleted

A msg sent has potentially been screen shot and forwarded to a new audience

A sent msg is no longer your property, it can be used by anyone as evidence

Harassment includes unwanted, persistent communication. It does not necessarily have to be explicitly unkind.

Bullying can be underhand and less than obvious

Abusive msgs are still abusive even if they are not directly sent to the victim of your jokes

Receiving abusive/unkind material makes you an unfortunate recipient, not challenging this makes you a part of it and joining in with it, laughing about it or responding to it makes you just as abusive as the initial sender

3 things I’m proud to see 

“Please stop”

“That’s not funny, don’t send me that”

“My mum reads my msgs, please don’t use those words”

Mummagrizzlybear has strong morals. In our household we have boundaries and expectations. We talk about it… A lot… My children, however are not angels. They are learning. I cannot possibly help them grow if I am not monitoring the things they are exposed to. Are you aware of the things your child is sending or receiving? 

5 things I’d like all parents to discuss with their young person.

  1. What does being respectful in communication mean 
  2. How to set themselves and their mates boundaries ‘don’t send anything you wouldn’t want your parent/teacher or employer to read’
  3. Things that are considered abusive
  4. Ways to stand up for what they believe is right
  5. When to talk to a grown up for help 

If you have read this post and are passionate about promoting a safe and kind environment for young people to be communicating in then please do reflect over your own practices. Think about how you are monitoring your own child’s interaction with others. Revisit the conversations you may have already had about safety and what’s appropriate and respectful. Support your young person to know how to challenge anything inappropriate and how to ask for adult help. Actively be involved with your young person and the social media world. 

We cannot ask everyone to set the same boundaries but we can be part of a community talking about promoting safety and respect amongst our young people. If you do discover your own child or their peer is communicating in a style you are not comfortable with think about your options. If safety of a child is in question, do not hesitate, be the whistleblower and take control. If its a question of supporting your child to implement boundaries, guide them. If perhaps you find that certain friendship choices require more supervision than you first expected then cover that. Where you feel it is necessary consider contacting the young persons caregiver direct but be mindful that they may not share or appreciate your views. 

In all cases, take responsibility for what you can influence from within your own home. 

What the SENCO said…

mummagrizzlybear’s poetic reflection on composing her representations about the draft EHCP

In amidst the filing, the paperwork and meetings, you can find a forceful mumma with info that’s stopping her from sleeping.

She’s sat up til 4am with a draft EHCP, offloading all her thoughts, determined to detail all the specifics that simply were not caught!

She’s taken on board advice from the SEN team, SENDIASS and IPSEA, she’s visited provisions and she’s desperate for the LA to understand her.

Rewriting her sons plan, was not a task she took on lightly, and all too well she recognized that the council might frown upon it slightly.

All that effort detailing exactly what he needs, a manual if you like for supporting her boy, that’s what she pleads.

Taking away ambiguity, cross referencing sections ‘B’ and ‘F’, begging close professionals to write supportive statements and the rest!

Then its all in an envelope, the 15 days are up, she’ll swallow deep and hold her breath and await to find out what the LA will discuss.

Again a ‘panel’ of people who do not know her son, will gather all the evidence and determine his fate and deliver this to a mum.

A mum. Not a super hero. A woman who has had to learn quickly. To teach herself the SEN law and legal rights all of which have made her feel sickly.

She took her representations to the SENCO and an advisor, who sat aghast at all the work she’d put in with no support beside her.

The advisor took her pen and smiled “there’s nothing I can add”,if the council will approve it, she’s certain this is a great plan for my lad.

The SENCO looked across the table and smiled reassuringly, then announced in her opinion ‘there was a career in this for me’…

And this statement has stayed with me far into the night, I’ve had to become an expert but I’m still so scared about this fight.

Its not a career path by choice, or a past time I enjoy, I’m fighting all I can to get the right things for my boy!

There is no disputing from the people who know him best, that I have found him the right provision but because of the ‘cost’ the LA cannot rest.

They’ll no doubt pick holes in the representations I have raised, I’m anticipating further frustrations and dismay.

When will it be our turn, to have it easy, and plain sailing? After all, all we want is for my sons education to not be failing.

No our school preference is not a section 41 and the LA will want to spend their funds wisely, but there are 10 places, it meets his needs and if you have a suitable alternative that will surprise me!

Fellow sen-parent warriors, send us up a little prayer, its in their hands, I’ve done all I can, please let the outcome be fair. 

Protecting time

Setting aside a space to not-be-ok is therapeutic and protecting that time is your responsibility

On a day that started emotionally charged, having barely slept due to dreaming about matters far out of my control, I noticed the anguish I was putting myself through by stressing about things outside of my power. You may too, know what this feels like and whatever the underlying cause, I’ll hazard a guess that if someone offered you their wise suggestions of “just let it go” or “don’t stress” or “try not to worry”, you’d probably wish you could respond with something unpleasant. Those offerings don’t help. As if by being told not to stress, we somehow miraculously stress less… If only. 

So is there any function to this seemingly unhealthy behavior? I believe there is. I genuinely think I gain something by allowing myself to suffer; to temporarily torture myself with all the what-ifs, the what might be’s and berate myself over the what I could and should have done etc etc. But it has to have a cut off point. A boundary. A time to stop. The emotional stage of ‘stressing’ allows a release. A release of all the irrational thoughts, ideas and negativity. A release of fears. A release of my most introverted genuine side that is 99% of the time concealed by my logical, sensible, hold-it-together self. Even the most level headed beings surely cannot hang on to their shit and keep it all together all of the time?! It has to come our somewhere and if we do not protect ourselves a time and space to unleash it, I’ll hazard a second guess, that the consequence can be far messier. Those of us not allowing ourselves the freedom to be stressed and overly emotionally responsive for a specific period are probably those of us driving with road rage, snapping at their kids, spilling the milk, breaking a nail, getting shitty with colleagues, barking at their partner, neglecting their self care, comfort eating, escape drinking, sending out a cold-front or simply missing out on the days good bits. All because, they’ve held it all in and not crumbled. They’ve kept a stiff upper lip. A stern silence. The broad shoulders approach and above all else they pretended they did not need to burst!

Setting aside a space to not-be-ok is therapeutic and protecting that time is your responsibility. Having a boundaried approach to this is where the power lies. If you are unable to make a start and finish time for ‘unravelling’ then you begin treading over dangerous ground. After all, losing your shit 24/7 is something you could be sectioned for at the extreme but without a stopping point we certainly risk becoming more vulnerable, we risk hurting others and we risk negatively affecting our health. 

Asking yourself some questions.

So what do you need? An hour? A day? Only you will know. 

What needs to happen in this protected time frame? A good cry? Do you need to yell? 

Who do you want to allow into this space? Do you need a friendly ear? A shoulder? The support of a stern say-it-how-it-is friend? 

Design your protected time with a clear beginning and end. During this time you do not tend to children (either you or them need to be out the way!) or housework, you do not go to work and carry on regardless, you do not respond to others needs, you do not answer that call or start deflecting by zoning in on other peoples lives via Facebook… you focus in on you. You’ll see here why its so important to plan this in. Protecting your time is not as easy as it sounds but its certainly achievable.

My most recent episode of protected time went a bit like this.

Shit nights sleep. Grumpy. Over thinking. Procrastinating start to the day. Noticed I needed a release but was just embarking on my mum-to-do-list before I should have been working from home. I was emotional and stressed and each task I started got interrupted in that unproductive way. So after asking myself what I needed, I prepared myself some time. On this occasion it was an hour. I wanted to offload, I needed a cry and a listening but reassuring ear. I muted my work phone, I pushed the lap top aside, and shut myself in a room away from the distraction of washing, hovering and the rest of the real world. My stopping time was set. I had a plan for after. I’d move on to a constructive uninterrupted 2 hours of work before squeezing in an hour watching a documentary I had been meaning to watch all befire mum duties recommenced. To begin with I offloaded with a couple of necessary but fiery emails. This was quick. I then called my Nan and cried as she’s a stable figure in my life, someone strong enough to not cry with me because on this occasion I didn’t need sympathy, just reassurance. The call did the trick. I then sat in complete silence. Taking huge lung fulls of nurturing refreshing deep breaths. I cleansed my face. I brushed my hair. I sat still. 

My protected time was done. I genuinely felt lighter, more ready to focus and less overwhelmed. I’d gained perspective and more or less rid myself of the niggling worries. Through letting it out I’d arrived at my rational viewpoint. I was back in control of me.

My protected time often gets a blog post started or finished. My protected time can be a middle of the day bubble bath or a 30 minute run. Sometimes I plan in my protected time a week in advance, not necessarily knowing I’ll be stressed about anything particular but conscious that a jam packed week will leave little time for Me to attend to me. 

Unlike so many parents, I am not sorry. I am not guilty. I value myself enough to do this for myself. In doing so, I am more likely to enjoy my time with friends and family more genuinely. I feel less pulled between pillar and post and I am able to attentively cross things off my to do list instead of half heartedly complete a task. I support clients week in week out who claim they are unable to find time for self care but then wonder why they feel so overwhelmed. So many of us are accustomed to western society beliefs that a parent must prioritize their child or that we show good manners by putting others first. 

Bollocks.

I protest. No one can look after another to the same degree they could if they first took care of themselves. Its the whole airplane scenario with oxygen masks. Please see to yourself before assisting anyone else. 

Protect your time. Design it. Create it. Make it happen. Let go. Just be. Enjoy. Then move on. 

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.