Since I’ve started Blogging about our family life, I have become aware of a new world. This previously hidden World is full of opportunity and adventure…but most of it, unfortunately for, me takes place in London.
Whilst there are many occasions where I would love to just drop all my parental responsibilities for a day out in London, I cannot justify handing over the reins of caring for our son, Danny, with a Heart Condition and additional needs, our two lively daughters, Rebecca and Caitlyn and our totally cute but oh so time absorbing, baby girl Isabelle, to Dave just for me to enjoy a “jolly” in Ye Olde London Town.
However, when this invitation arrived in my inbox, I could not refuse:
“Edward Timpson, the Minister with responsibility for special educational needs and disabilities, would like to invite you for tea and coffee to talk about your experiences. You’ll be aware that the system is undergoing a lot of reform and the Minister would like to discuss with you the changes being proposed in the Children and Families Bill, which is currently going through parliament.”
Straight away, I texted Dave and told him about this opportunity. I knew it would be difficult for me to arrange to go but I really wanted to make this happen. Luckily, he supported me and arranged to take the day off work and “cover me” for the day. Granny and Grampy kindly agreed to look after Isabelle whilst Dave attended a school nurse appointment with Rebecca in the morning, and then joined in with a school club with Danny during the afternoon.
My mum volunteered to keep me company for the long and otherwise, lonely, journey to London.
So it was on! I was going to London to meet an important Minister and get the chance to tell them the good, the bad, the ugly of what it is really like to bring up a child with disabilities and special needs in this country.
Initially we were going to spend over a hundred pounds on return train tickets EACH. Then my sister, Jo suggested trying Megabus. We found that we could each get to London for just £10 return, so ever the money saver, I promptly booked these tickets! The only catch was we would be travelling throughout the night. I pondered leaving Pembroke Dock at 2.45 am, arriving London at 9.40 am and going straight to Westminster, but quickly decided that I would not have felt comfortable meeting a Minister and other Bloggers on very little sleep, and undoubtedly being inexcusably dishevelled!
Therefore, we decided to travel through the Saturday night and stay overnight in a Travelodge Sunday night, so I could arrive at Westminster bright and bushy-tailed (well there’s a first for everything!).
Even with adding a hotel stay, we still paid less in total than we would have done for one return train ticket. It was tiring, but we managed to have a fairly comfortable, restful journey to London.
As soon as we arrived we went sightseeing and took lots of photos, so my next post will be all about that. We slept very well in our hotel Sunday night and come Monday morning- it was time for my meeting.
I admit that I felt very nervous as I had no idea what to expect and I had never met any of the other Bloggers in person before. I was also excited as I love meeting new people and hearing their stories-and oh what inspiring stories they each had to tell!
Mum and I made our way from the hotel and I planned on meeting Amy from One More Means Five, however, I couldn’t find her, so we kept on walking, unwittingly enjoying more sightseeing, Big Ben, the Houses of Parliament, Westminster Abbey, Saint Margaret’s Church … and we stumbled upon The Department of Education, just where we needed to be!
We lingered outside and then I spotted two ladies also walking towards the DoE, I blurted out, “Are you Bloggers?” As I asked the question, I realised how absurd it would be if they turned out just to be passers by and I had asked them that! Luckily for me, they were indeed the lovely bloggers- Steph from Steph’s Two Girls and Renata from Just Bring The Chocolate. What a relief!
They went on in, whilst I hung outside a bit longer waiting for Amy and Marissa (Missy B and Family) who was understandably a bit worried about finding the place. Eventually, I went to join Steph and Renatta to wait for the others inside in the warm.
I wasn’t sure if we were allowed to take photos without permission inside the building or not. There was a wall of portraits of all the past and present Ministers and Secretaries that I was tempted to take a photo of but didn’t dare!
Once the majority of us had arrived, Edward Timpson’s lovely PR Manager, Sarah, came down to bring us all up to a meeting room to enjoy tea and biscuits and to get to know each other.
It was really interesting to hear the other Mums’ situations. We all had so many varied stories and yet so many of our issues were the same.
Somebody expressed their concerns that they were worried that some of us may have been more concerned with our own agendas, so we may not all get the chance to get our own individual point across. Whilst realising that we would not have time to discuss every issue and completely solve the problems of all children with disabilities and additional needs, this did not worry me.
As long as we each got to explain our own situation and express one main point then that would be enough for me, I was just so grateful for this opportunity.
I also felt really privileged to meet the mums that I did on that day. Their stories were so inspiring and I felt honoured that I got the chance to meet them all. It is lovely to relax and chat to others for whom “statementing”, “key workers” and “CAMHS” are also the norm!
As it happened, even where our situations were very different, a lot of the core problems and issues that we expressed we were facing were the same.
Everyone agreed that early intervention was key. In Edward Timpson’s thank you letter to me he wrote, “your views on the importance of early help were particularly welcome.”
In my situation, Danny was born with the complex heart condition, Hypoplastic Left Heart Syndrome and life is incompatible without surgery. We had that diagnosis from birth and knew that he would have the right to a Medical Health Care Plan once he started school.
However, for Danny’s other additional needs he has never had any assessments and therefore never received any official diagnosis.
Aside from that, since Danny was three and went through a very traumatic major heart surgery and recovery we have enquired if there is any emotional support to help young children like Danny going through this ordeal. We did not find any and carried on with our lives whilst trying to support him the best way we could.
Now, our way is not enough, Danny has reached crisis point and needs emotional intervention sooner rather than later, we can get him a referral to CAMHS and he can access counselling services, but the point that I raised to Edward Timpson was it would haven been easier to support Danny emotionally from the time of his third operation (the first one that he was old enough to remember) whilst he was still at our level rather than now have to attempt to hoist him up from rock bottom, which is back breaking and more costly to the Local Authority than early help would have been.
I am almost certain that everyone in the room’s situation could have been improved with earlier intervention and even more importantly, support.
The other big common issue seemed to be “statementing”. I can hear all you readers who are parents of children with additional needs groaning as you read that word: STATEMENTING.
There will be those of you who have been through the gruelling process, others about to embark on this essential journey or people like me who have contemplated it but been put off at being told constantly there is no point- “You will not get a statement, so why waste yours and the school and Local Education Authorities’ time?”
I am ashamed to admit, as both a mother and a teacher, I have shied away from getting an official statement for Danny. I was encouraged to, from Danny’s birth, by my Health Visitor who could foresee problems that Danny would encounter in school in the future. I naively assumed that aside from his medical condition, Danny had the same chance to excel in school that other every child did. I told her that I would only go down the route of statementing, in the future if I saw it was necessary
As soon as he started school and found it a struggle, I asked the Headteacher if I could request a Statement for Danny, which I felt would help us all. When she explained that she was willing to help Danny, but expressed her negativity against the Statementing route I immediately backed down. I felt a positive relationship with the school and a promise of help, was more important for MY child.
In the new bill the Statement will now be an “Assessment of Education, Health and Care Needs” (the EHC Plan). As Health is now highlighted within the title, I think I will feel more justified to request an Assessment for EHC needs for Danny.
Sarah from LowdenClear perfectly described why parents should be more involved within the Statementing Process: “parents are a force not only to be reckoned with but also to be harnessed. We are experts in our fields, we know things (and what we don’t already know we make sure that we find out).”
Therefore, Sarah argued (and the rest of us whole heartedly agreed!) that parents SHOULD be on the Statementing Panel. Just because our children have additional needs, why does fighting for them to have the same education become a case of parents against the school or Local Authority? It would be so much more beneficial for a lot more children if we all worked together.
Another reason why I gave up on the requesting a Statement route was that I felt my son’s health and educational needs were being met. Towards the end of his Infant Years (albeit when he reached crisis point) he got a place within the Nurture Group within the school.
He then transferred to Nurture Group within the Juniors. Danny spends at least half his school life in Nurture Group. He loves it there, is comfortable there and learns there. The only thing that I dislike about Nurture Group is the stigma about children needing to be in Nurture Group because they lacked early nurturing experiences. This was even mentioned within our meeting. However, personally, I do not always feel this is the case.
I feel Danny had lots of nurturing in uteri and post natal. Comparing my time with Danny as a baby against my time with Danny’s younger sisters, I would argue that he had the most nurturing. I loved and love Danny so much. I have albums of photos showing how much I hugged, cherished and played with him every day before he started school. It is due to Danny’s additional needs that he now still needs nurturing in school as well as at home with me and not due to a lack of nurturing. I would even go so far as to say every child deserves ongoing nurturing and not just children with additional needs. Who wouldn’t benefit from smaller class sizes and “a safe and predictable structured environment”?
This stigma is the only thing I dislike. I am a wholehearted supporter of Nurture Groups and admit that when I return to work I would now prefer to work as a Nurture Group Teacher, paid at an LSA’s wage rather than as a Classroom Teacher, paid at my Upper Level Pay Scale and possibly struggling to meet the needs of all the children within my class.
I also think that parents of children with additional needs should be nurtured more rather than encouraged to fight all the time. We’ve already, by the nature of our children’s medical and/or additional needs, got more problems on our hands, please offer us support rather than more hurdles to jump.
Another positive that we discussed was having a “Keyworker”. We have just been assigned one. Oh! The relief at having somebody there to listen to Danny…his sisters…and us… ON OUR SIDE.
A few weeks after being assigned our lovely Keyworker, we then received a letter stating that due to cutbacks in European Funding our entitlement to a Key Worker was now being reviewed! Thankfully, she has confirmed that she will be here to help us as long as we need it, but this to me summed up how the vulnerable families are looked after at the moment.
I look forward to “the local offer” coming into place. We have had to fight and rely on charities to find out what help Danny is entitled to. When the Local Authority has to inform us of the provision available to him this will be a big help.
It’s the little things that can make our lives so much easier. For years Danny struggled going to our local Children’s Ward for blood tests and extra vaccinations. Emergencies would enter the ward and we’d be waiting to see a Doctor ALL DAY. We would not be offered food or drink and may not have bought substantial food with us as we’d only planned to be on the ward for our appointment then home. Not to be stuck there for twelve hours. Danny had one really bad experience giving blood on the ward. Every time subsequently, he had flashbacks and struggled again. On future visits, Dave had to accompany me to hold Danny down.
One day, when I tried to book Danny’s bloods at Children Ward, the operator accidentally put me through to the Paediatric Bloods Clinic. We did not know this existed. They asked me lots of questions about Danny and enquired about his phobia for giving blood. When we attended our appointment at the PBC, they put Danny completely at ease. He was so relaxed that he didn’t even feel them take his blood. As Danny knows how they respect him and treat him with care he actually looks forward to his appointments there now. The amount of trauma we could have prevented if we had only known about this service earlier.
Edward Timpson seems to be really sincere in his role as Minister for Special Educational Needs and Disabilities. He grew up surrounded by foster brothers and sisters, often with special needs and disabilities, he regularly runs marathons to raise money for children’s charities and he had photos of his own children proudly displayed in his Ministerial Office.
He writes that:
“Having a child with special educational needs, comes with enough challenges without having to challenge the system as well. I believe our reforms will make sure that the SEN system does much better by you and your children…I want the system to fit in with your needs rather than the other way round.”
I know that the SEN system has been reviewed so many times but never seems to change. I’m really hoping, both as a mum and a teacher, that this time, as they are taking the time to hear lots of people’s views, it really can change for the better!
Thank you so much to Tots100 for this opportunity!
Also thank you to all of the Mums that I met on the day. They all have awe inspiring blogs so please read them. Aside from the ones I mentioned above, I also met Tania and Debs from Special Needs Jungle, Susan from Mum of Four and Stephanie from Was This in The Plan.
I loved getting the chance to meet you all, ladies, and hope we can keep in touch online and meet again one day in reality to put the World to rights again!