Life Support

On Friday morning  at school a group of  12 SEN Mums got together to chat and support each other , while drinking coffee or tea and eating cake and savoury treats. We only see each other once a month as a group and so we had a lot of catching up to do. Four Mums reported that they had been having a tough time lately and so we listened and tried to both support and distract them from their worries. Some advice was exchanged and some humour was shared. It is my hope that everyone felt better when they left the coffee morning than when they arrived. We cannot usually solve many problems but it is  often true how the saying goes, that a problem shared is then halved. Our coffee mornings are a safe space where parents know that the others there understand the world of special needs; all of our children are  very different but even so, we have all  had to fight for services and support and we have all felt, at some time or other, the isolation of being an SEN parent.We talked about how often our friends with ‘normal’ children, struggle to understand our situation and how that can create a distance between us. One Mum explained that her son no longer likes to leave the house and so outings and holidays have become impossible for her.

Two in the group are embarking on new qualifications , one at university and another on an online course,  which will improve their understanding of their, and other, Special needs children. We gave our consent to take part in some research for one of these students. I am conscious also that as Joshua embarks on his final year of school, that those Mums with older teenagers are watching us, wanting to learn from our experiences to help to improve their own. We talked about me returning to the coffee morning once Joshua has left school and moved onto daycare, to report how things are ‘outside’, which I will be happy to do of course.

I had a simple text later in the day which made my heart swell , saying ” Thank you for this morning, I really needed that”. That is why I spend my free time baking and why I give up one of my Friday mornings off every month, as I  know that it is appreciated by many and has become essential for a few.

Happy Father’s Day

It is odd but since our Mum died, both my sister and I have found ourselves reflecting much more on Dad , who died 5 years ago now. I , like Mum, have christian faith and so I know that my parents are re-united, pain-free, in heaven, so that makes death much more tolerable. My tears of grief are actually for myself and others, rather than for Mum, as we will miss her, but her soul, I am confident, is in heaven , where it will last forever.Her presence is all around us : my sister met a portion of rainbow over her house, when there was no rain, when she arrived home on Friday evening and nobody will convince me that was not Mum comforting her. Last night as it was almost going dark, my husband and I walked to see  a white birch tree that we had planted with Mum’s vouchers for Joshua’s 18th birthday, on her instructions ; the moon was full and silver and the sky was a beautiful pink, the whole scene was ethereal.

Our Mum and Dad were a great team, a wonderful partnership, as we were growing up. They complemented each other and I cannot recall any cross words , ever, in our household. My Dad would mutter if he was unhappy about something, but there were no raised voices, and I am much the same, as I detest shouting. They were a calm, honest, reliable presence throughout our lives and now I am happy to try to step into those big shoes that have been left empty.

Joshua’s Dad has really had taken on a lot of responsibility lately; as well as grieving himself, as he adored our Mum, he has been there in support of my sister and me , as well as taking on a greater childcare role than usual. So all of his husband, brother in law and father duties have increased, to allow me to fully focus on the loss of my Mum and I am really grateful for that. At Mum’s house on Thursday, he could even be found hoovering, which is a rare sight, and he went to the shops to buy the ingredients for and cooked my sister and I, fajitas on Thursday evening, when we thought that we did not really feel hungry. He has fallen into the background in a solid supporting role, just exactly as we needed. I don’t think that ‘Husbands Day’ or ‘Brother in law Day’ exist, so we will just make a fuss of him today, on Fathers’ Day instead.

Reap what you Sow

Around four years ago now, I suggested to Joshua’s Special School that I set up a monthly Coffee morning for parents. As most of our children are transported to school by taxi or bus, we do not automatically have the opportunity to meet other parents at the school gates,as happens at mainstream schools. So the coffee morning was designed to be an opportunity to be a safe, friendly space where parents of children with special needs could share , or forget, their problems for one morning every month. Over the years many parents have come and gone, but there is now a core of parents who I consider to be friends as we know what is going on in each other’s lives and we are in contact , mainly on social media, in between coffee mornings.

All this time, I thought that I had set up the event to support other parents, to offer them a safe place once a month. I learnt yesterday that I need, and benefit from, that support too. I realised that, despite grieving, I wanted to see my friends and I needed to call upon their support. I wanted to show that I could still function, that I was able to bring homemade short bread, cheese straws, cheesecake and brownies to the table. In exchange, I asked for several hugs, which I received. They took their lead from me, so I had said that I would not wish to talk about Mum , but at one point yesterday we were talking about cremation and sharing ash-scattering stories. I was given the benefit of experience from other parents there who had lost their parents and I just felt surrounded by warmth and concern, which made me smile rather than cry.

As well as our coffee morning, school was welcoming new parents too, those whose children would be joining the school in September. I showed my face at their meeting and was introduced as someone who does ” amazing baking” every month and I donated some samples to their event. I would like to think that those new parents will also in time, benefit from the warmth of the group. I am hoping that this positive support group will continue long after Joshua and I have left the school next summer and if so, that would be a legacy that I would be very proud of. I was asked yesterday if I would come back sometimes when Joshua has left, to tell them about how life is beyond school and I joked that I could be an occasional guest speaker. Joshua is now the oldest pupil in that coffee morning group, so many of those with teenagers, are eager to see how we fare in the big bad world of Adult Services and hopefully they could learn from our mistakes or experiences. I had thought that I would leave them to continue on after next year, as it needs a new leader, but after the support that I received yesterday, I realised that I will want to continue to visit occasionally, as a guest, and rather than feeling awkward as I had feared, I think it will feel like a natural thing to do.

Life and Death

There are all kinds of bereavement therapies available , but I have never heard of Baking Therapy. As a way to relax and distract my mind from over-thinking, I find baking to be very helpful. I create something that is, hopefully, delicious out of raw ingredients and I have to focus fully on the recipes, so it is fully absorbing. Yesterday, I was given some cheese at work as it was leftover from a project. I left work early , potentially for a nap, but instead first of all I made some cheese straws then drove them back to my colleagues in the office, while they were still warm. That was almost as relaxing, and more rewarding, than my planned siesta, as it made my colleagues happy.

It will be my Parent Coffee Morning this morning at school, so I was busy last night preparing brownies and cake for them to enjoy. I have not seen the school Mums for ages, as we did not have a coffee morning in May, as half term got in the way, so it will be good to see them again as April seems forever ago . The last fortnight seems to have been a full lifetime, I just had to double check my calendar then, as I did not believe that Mum could have died just 2 weeks ago today. I am hoping for some hugs and support at the coffee morning, but mainly some distractions, to be able to think about other people and their issues for a change, so that funeral matters can fade into the background for once. It was important for me that I did not cancel the planned event, or delegate it to someone else, as this is something that I enjoy and carrying on indicates that I am still able to function, even though I will not be, nor do I have to be, the life and soul of the morning.

Today, parents who’s children will be joining our school in September have been invited to school for a look around, to meet their teachers and to meet some other parents too. They are having their own event this morning, but I am hoping to meet them too , so that we can make them feel welcome and recruit them to our coffee mornings in the Autumn term. They will be feeling all kinds of emotions today I would have thought, ranging from excitement and relief to get their child at a specialist school, to anxiety and fear about their vulnerable child coming to a new environment. These families are at the start of their journey with our school, whereas we are on the countdown from September, it will be Joshua’s final Autumn term and the start of another emotional roller coaster.

But I am putting that aside for now, my brain and nerves can only handle one change at a time. At the moment I am living just one day at a time, so today is all about the Parent Coffee Morning and about surviving the two week anniversary of Mum’s death.

Friendship

I have already written to tell you what my parents and sister mean to me and the important roles that they play in my life, well I now want to tell you how much my friends mean to me, by telling you the things that they have done to support me, just in the last few days:

  • Last week was a difficult week in terms of juggling work, motherhood and visiting my Mum in hospital. I stayed away for two nights and got back home on Friday evening. I unpacked the car and then saw that two parcels were waiting in an outbuilding as they were too large for the postbox. One of them was addressed to me and had come from my first best friend in Texas. I ripped the packaging off to find the most beautiful, vibrant patchwork quilt that she had made for me as a gift. One side is turquoise – my favourite colour – with large orange flowers on it but the other is made up of so many different bright fabrics, some floral prints, some with bambi on from our childhood and some busy bees. It is such a work of art that I was reluctant to use it, for fear that it might get dirty or ruined, as it looks too perfect to use. I emailed immediately to thank her, and she told me that it was a ‘working quilt’ that is machine washable too and that it was to be enjoyed, like my baking she said. I was so touched by the time that she devoted to creating my present, with me in mind. She told me that she makes quilts to thank important people in her life, in the same way that I bake cakes, as my original quilt had been given away to her cancer doctor as a thank you, which of course I understand totally as I take the same approach. However a cake takes an hour or so of my time, making a patchwork quilt is a much bigger undertaking.
  • Last night I had been sad as I came away from hospital as Mum was not as well as I had hoped and I had told my best friend . She had immediately offered to come over to my Mum’s house – all of 100+ miles away – to stay with me, but I assured her that I would be OK.  She then gave me practical help for the first 45 minutes of getting to Mum’s house, offering me IT support in trying to make emails work again on Mum’s iPad. She patiently tolerated my technical incompetence and talked me through each step that I needed to do. So she kindly gave me the gift of time and, as a result, we seem to have fixed the problem together and also , it usefully distracted me from the way that I had felt on the drive home, as I had a practical task to focus on.
  • A Mum from school had shared my recent blog about school nurses on social media, saying that her ” lovely friend posts this blog everyday..” and I was touched by her kind words and her support of me, my blog and the school cause. When I thanked her, she described me as a “warrior” who has taken on battles for Joshua, myself and now for Mum, which was a lovely thing to say and gave me strength, when I was doubting my own abilities. Many Facebook friends , even if they do not know Mum ,have been asking after her on a daily basis, which is really thoughtful. Some friends asked after her when she first went to hospital three weeks ago, but there are many who continue to support and ask about her progress even now, which gives me a warm glow.
  • Yorkshire Grandma is a friend of the family and once again, she has stepped into the gap this morning. I expected to set off home early enough to be there when Joshua wakes up and to get him ready for school, as my husband needs to leave at 7.15 for work. However, even as I was driving over yesterday, Yorkshire Grandma let me know that she was available in the morning, if things did not go to plan – how well she knows me! So that meant I was able to offer to come back to hospital in the morning, without checking first about Joshua’s care, which was invaluable. These last three weeks she has been a rock that has enabled me to focus on Mum, knowing that Joshua was in safe hands and would be happy too.

So as you can see, I am blessed with very kind, thoughtful friends – as is my Mum judging by her get well soon cards and the people eager to visit her!- and they are invaluable when life takes a difficult turn, as I am not sure where I would be without their support. Thank you my friends, you know who you are xx

Coffee, cake and chatter

Today is the penultimate Parent Coffee morning of this academic year, so I have been busy baking last night and this morning to tempt more parents with homemade treats. I never know how many parents will attend so it is always tricky to judge how many cakes to prepare. What I do know is that there is usually a small queue of staff at midday to gather up any leftovers, so there has never been any waste so far.

I have been trying to recruit new visitors over the last couple of weeks and I hope to take some photographs today for the school website and noticeboard. Many mums that I have spoken to have felt intimidated by the concept of a coffee morning and walking into an imagined room full of strangers. So I want to show that we are friendly and informal, as well as not such a large crowd that feels overwhelming when you know nobody. Several of the mothers that I have called on the telephone have described themselves as being ‘anti-social’, which is rather sad. I wonder if they have always had that personality or if it is as a result of parenting a child with special needs that has lead them to withdraw, to become shrinking violets? We feel different to ‘normal’ parents and face different challenges, but that is something that we all have in common even though our children’s disabilities are so varied.

We usually cover a wide range of topics and I am sure that this morning’s referendum result will be discussed today and I am expecting to hear some wide ranging views. I have explained that the discussions are not all doom and gloom, special needs parents all feling victimised and alone. It is quite the opposite, the debates are helpful and often empowering and advice is regularly shared. There has been talk of extending the group beyond daytime coffee to a night out together, so let’s see how that idea progresses today.

I am looking forward to this morning, so had better get a wriggle on…..

Cake and chat

It was my fourth parent  coffee morning at school yesterday and it went well once again. There is always a moment of doubt in the morning, that everybody will forget and that nobody will come. But as I brought Joshua into school, I recognised a number of Mums waiting in the foyer as Joshua made his slow walk passed to his classroom. So I set up the room and put the kettle on, now with more confidence that we would have some parents in attendance.

The room was immediately full as I invited those waiting to come down, which was great and everyone started to chatter away and tuck into the cake and biscuits. Very early on, somebody asked when the next event was going to be , which I took as a positive sign. We had settled on the last Friday in the month , but as that will be Good Friday, we could either make it in just three Fridays time, or wait until after the Easter holidays. The consensus was to repeat the event in just three weeks time, so that too is encouraging.

We all have at least two things in common : we all have a child that attends the same special school and so we all know the challenges of raising a child with special needs, even though each child’s disabilities are different and their ages range from juniors  up to 18 year olds in the sixth form. So as well as everyday chat, a range of topics were covered either by the group as a whole or in smaller pockets of conversation, such as carers allowance, respite, transitions to  adulthood and the complicated payroll system for Direct Payments. I heard one lady say ‘ It is a good job you came, or else I would never have known that!’, which was great to overhear.

It is a relaxed  and friendly atmosphere and I am hoping that it will steadily grow so that more parents get involved. I was trying to persuade some Mums that I met on Wednesday to come along. One said that she was reluctant to come alone, as she did not know anyone, and I do know how intimidating entering a room of strangers can feel, as I have faced that fear many times in my life. I used to be more lily-livered than I am now, I have more self confidence now than before, but I am close enough to it to remember how frightening it could feel. So I tried to reassure her that we were a friendly group and I pointed out that        ” You know me now.. and you never will know any more parents, if you do not give it a go” So we shall see.. the cake is the hook to persuade them to come, but I am hoping that it becomes more about mutual parent support, than about eating free cake and biscuits, although that is always good too.