The power of ‘deep breaths’

I met a lady this week who scoffed the advice, of taking deep breaths and doing something ‘nice’. Right at this time she just couldn’t see, just how empowering self-care can turn out to be.

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I saw the tiredness in your eyes, the tears you hold back and are trying to hide. I see you struggling and at your wits end, I know the pain and the strife my friend.

We are told a ‘label’ will not change a thing, we will still have the challenges our child brings. Professionals grind you down and destroy self esteem, ignoring our plight is not supportive, it’s mean.

Whilst you wait in a queue of an extensive list, keep track of the things some professionals miss. Prepare for your meetings assertively, watch out for those trying to dodge accountability.

Find out your rights and strive for what’s best, i’m afraid at this stage you just cannot rest. This however means that you must work hard, taking care of yourself will be your trump card.

I met a lady this week who scoffed the advice, of taking deep breaths and doing something ‘nice’. Right at this time she just couldn’t see, just how empowering self-care can turn out to be.

Dealing with challenging kiddos is rough, and many a moment you’ll feel ‘that’s enough!’ Learning to work on your own stress and anxiety, prepares a stronger character for the next day, someone with resolve and flexibility.

Getting your sleep, developing your strength, helps us all to increase our resilience. A glass of Gin or making the time for a bath on our own, are some self-care tasks that I’m proud to own.

Recognising our responsibility, to take care of oneself is not selfish you see. Improving your mental health and focusing on well-being, reduces the risks and can give parenting new meaning.

Understanding that ‘change’ will start with YOU, each day a fresh start to try out something new. List out your goals and then like at a gym, work out how to achieve them and let support in.

Reach out to people who comprehend, where you are now and the things you want to end. Keep your circle small, trusting those who share in your plight, you’ll need encouragement and positivity if you are to win this fight.

Each day task yourself with a ‘positive’ to find, something you love or achieved or deed you saw that was kind. Open your awareness to the joys of a day, a blue sky, a fresh breeze or something good coming your way.

Reject pessimism, the ‘doom’ and doubts, take charge of your thoughts, push the gloom out. Remind yourself just how much you’ve already survived, picture your goal up ahead and then onwards you strive.

Taking deep breaths sounds too simple to you, when I heard this I thought “if only you knew”. Our world was so different just 12 months ago, but ‘defeated’ didn’t help and this I now know.

Empowered and confident that I do know best, brought changes unimaginable into our nest. Learning to breathe and take time for myself to heal, gave me back my hope, aspirations and opened doors to the things I wanted to ‘feel’.

You too can combat the rut that you’re in, just recognise first that you are prepared to ‘win’. Baby steps first, make small changes first, if you trip or fall, get up and plod on and not wallow in hurt.

So much of this ‘battle’ starts in our heads, as we end each day recounting failures and tomorrow’s dreads. Reprogramming our brains is power and key, to change things, we first must choose to! Trust me.

EHCP – The ‘success’ stories so far…

Where I needed more clout I approached those who know him best, and in true fighter style they did the rest.

I’ve just re-read our amended plan and wanted to share with you what I can. I’m surprised by what we have actually achieved and I’m spreading some hope, you have to believe!

Our original draft plan barely depicted my lad, causing me hours of writing for which I am now glad. I tore it to pieces, and diseccted it thoroughly, assuring myself I knew him best but my representations still worried me.

I wasn’t certain they’d be received with glee, as I’d written so much, so explicitly. I wanted his plan to not be ambiguous, I needed this plan to protect and reassure us.

I edited their draft with solutions not problems, highlighting their short sightings and detailing my son. I described all his needs, and how I feel they should be met, broke it down for their ease, so they didn’t break a sweat!

I spent hours writing, using their lingo, sourced evidence to prove I knew how to do so. For every ‘request’ that I made, a note I included showing them why I knew they’d have to approve it.

Backing up my points by highlighting the professionals reports, I was presenting a case they could not retort. Where I needed more clout I approached those who know him best, and in true fighter style they did the rest.

Hours of phone calls, emails and meetings now seems to be paying off and the pain was only fleeting. Having confidence to be assertive and not be pushed around, will ensure that my sons plan is robust enough to keep him safe and sound.

I’d taught myself the law, gained advice from every team and made sure our LA understood just how far I’d go, if you know what I mean. The prospect of court obviously filled me with dread, but I knew this threat was the only way I’d ever sleep soundly in my bed.

In a turn of events, our LA started listening, correcting their oversights and the plan they started editing. They’ve even taken on board my requests for additional outcomes and copied my suggestions for how these could be achieved for my son.

An accurate plan is only one step in the right direction, next we need a placement that can deliver all the suggested provisions. Our ‘dream’ school imply they can certainly meet all of his needs, its the commissioning process next and the outcome yet to be seen.

Today I am proud and to their contact I reply, with minimal suggestions for further amendments I imply, the plan is shaping up just how I wanted it to read and right now I recognize most of that is down to me!

Fight on for what you know is right, do not be dismayed, if the plan your given doesn’t represent your child then the court card you can play. Be clear about your views on your childs additional needs, then describe exactly what you feel a school will need to read.

Ensure the plan describes your child very explicitly, do not allow your LA to get away with ambiguity. IPSEA and SENDIASS are starting points for advice, be confident and remember you can’t always play nice!

In the long run getting the LA to comprehend your point of view, is probably the best way to get them to work with you. Hopefully you have at least one professional who you can trust, who can help your LA understand why the amendments to the draft EHC are simply a must.

A year can change ‘everything’

How christmas became something that could work for us

Its said its the season to be jolly, and in previous years I’ve felt such a wally. How could we turn Christmas into something he’d tolerate? When the anxiety brews from each thing that we celebrate?

Xmas eve as kids slept, hopeful Santa would come, our babybear cried into the arms of his mum. Afraid to be awake, scared he’d not get back to sleep, all of the stresses making him weep.

As Christmas morning woke, somehow Santa had delivered and despite the lack of sleep, the kids smiles gave me shivers. A well prepared Santa had left only small piles as this year he knew how important it was to bring less stress and more smiles.

‘Something you want, something you need, something you wear and something you read’, these were the tags from dear old St Nic, the gifts brought joy and anxiety was over quite quick!

We used cellophane to wrap some gifts to reduce the ‘surprise’ now we’ve learnt how much stress is brought on by the disguised. We slowed things down and saved gifts for later in the day, we avoided lots of commotion by doing it ‘our way’. 

Pokemon cards fill my house, what a clutter… But those are the things that delight our little nutter. He’ll frustrate me no end with his obsession for a while and eventually they’ll be redundant and then left in a pile!

With Minor little blips and only one session of screaming ‘I hate Christmas’, we found ourselves sat for a feast with minimal fuss. The food was devoured, a great joy for all, we later survived a board game, although it was nearly an order to tall!

Unfortunately that night the ‘bug’ did hit us, and the following days disappeared like we’d all been hit by a bus! We savoured plenty of family time, mastered some games and ‘quiet’ (reclusive) days turned out to be fine!

Its been different this year, that’s one thing for sure but we’ve minimized the stress and enjoyed it much more. We’ve managed much more than I thought we could and saw the new year in the way a family should.

I’m excited to see what 2018 brings and conscious that I need to try out new things. I’ve left my job, I’m planning to write, I’m now more available to push on with our plight.

In the weeks before Christmas we made huge steps with our LA. I really believe we will achieve a place at our dream school for our boy with PDA. 

Last year our Christmas was quite a frightful sight, our boy was out of school and tears flowed long into each night. Last year my husband and I had cried, hugged each other tight and vowed to survive. This year we’ve cracked it, our vow was strong, we’ve done more than survive, we lived and loved long.

I plan to share my tips for surviving the fight, learning to live again and keeping what you love in sight. A journey with PDA can be rough and I’d never have believed we would be just this tough. But 2017 you taught me one key thing, and that’s the tables can turn and a year can change everything. 

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.