“Your Positivity Makes Me Feel More Low!”

“Your positivity makes me feel more low.”

Well, this really was a first for me. My being positive making someone else feel less positive? Wow. I was a little lost for words for once.

Someone who has always been in my life and loved me as I have loved them, told me that my positivity makes them feel more low. I won’t go in to the full conversation, to save the upset of the person should they read this blog one day. However in short, it was a conversation about some of the sadness we have experienced in life with our disabled children. Different eras and different disabilities and I’m inclined to say their experience has been somewhat more extreme than mine for various reasons but non the less we share a life path in many ways.

I wanted to know about some of the lovely memories and positives she could recall. Apparently life had been so bad she just wasn’t able to think of any and she told me that my positivity made her feel more low! I tried to talk it through with her but unfortunately the conversation didn’t end well which has made me very sad.

I regularly have days or moments when the chronic sorrow (click here for a previous blog post about this) is present and times when it’s a real challenge and I want to tell the world to get lost. However, I have worked really hard to build my emotional resilience. It doesn’t happen over night and it takes a sort of practice. You don’t suddenly get a six pack after twenty sit ups, you practice and repeat (no wonder I’ve still only got a one a one pack). For me, it started to build once I had accepted our current reality.

The grief I felt at each stage during the realisation that life wasn’t going to be as I had imagined was overwhelming at times. That phrase ‘heartbroken’ couldn’t be more apt. When my Dad died, at the young age of 56 just two years before Freddie was born, I truly felt my heart had been smashed into a thousand pieces and I felt that same pain at times with regard to Freddie. The fear, worry and sadness was immense, especially during my pregnancy and the early days. This was compounded by the lack of diagnosis to explain Freddie’s special needs and disabilities.

Our Words Impact Our Life

I truly believe that the language we use impacts our state. The more negative you speak, the more negative you are. This is one of the reasons you won’t hear me say, especially in a workshop, that I’m ‘fighting for services” or “it’s a battle’ for Freddie’s therapy needs or that I am “inferior to the professionals” in our lives. Yes, it is a challenge and to be honest, I am exhausted most of the time but life is short. The words we connect to our experiences can become our experiences. There is a great book all about this, Words Can Change Your Brain, Dr Andrew Newberg M.D & Mark Waldman.

“A single word has the power to influence the expression of genes that regulate physical and emotional stress.” 

“Angry words send alarm messages through the brain, and they partially shut down the logic-and-reasoning centers located in the frontal lobes,” 

If we use negative talk at home about Freddie and his needs and challenges in front of him or Bella and Jago, they too will feel that negativity. Our words are their words.

We want them to grow with high self esteem. If Freddie thinks we are sad about him, I can only imagine he will be sad also. So, we celebrate his achievements each day, the same as we do for Bella and Jago.
I totally believe I can get anything, any service etc that I need for Freddie and that he can achieve anything with our love and support. It might take time and I might need to try many different routes but I am determined. Don’t get me wrong, I’m not a robot and I stumble and fall at times but that’s all part of it. You’ve got to believe you can do it to give yourself half a chance if achieving it. Thats just my way and what pushes me forward.
I choose to focus on the positive side for the majority of the time and I choose to see and celebrate the positives. I choose to make the most of our life together and experience as much as possible, just as I had intended before we had children and before disability entered our lives.

I always hope my positive state and emotional resilience is a source of encouragement to others. I know that not everyone is in the same emotional place as me and I get that, I really do. I was there myself and I still have a way to go but if I give in, I think it would be a disservice to our family.

No one experiences their life without difficult times and without some sadness but we can chose what we do with those experiences. x

 

I am Bill Murray!

I admit it. I mostly hate bedtime. Not mine, I love my bedtime. Some days I just really hate the children’s bedtime. It truly is like doing an aerobic workout. It’s exhausting.

It’s not awful every night but tonight it was pretty bad. I know Freddie is really tired having started back at school but his behaviour as soon as it comes to getting upstairs is terrible. Flying solo makes it tougher.

I think his sensory processing is all out of kilter at the moment. I’m sure it’s worse when he is tired. He chose the shower this evening but started freaking out the minute the water was running. He started shouting and screaming as soon as he was under the shower head. To anyone walking by, it would have sounded like I was beating him. I wasn’t.

Getting him dressed, drying his hair, giving him his meds etc all sounded like a torture session.

The whole act of getting a quick shower, popping on PJ’s and cleaning teeth should have taken what, about 10 minutes, maybe fifteen? Forty minutes later, I’ve managed to get him in to bed. This is my equivalent of training for a marathon.

SUPER SIBLINGS

Thank goodness for Bella. She was a total star. She read to Jago and brushed her own hair and teeth whilst she waited for me. She can be a handful and strong willed at times Which will be a positive attribute in coming years) but tonight she really pulled out all the stops. I realised how grown up she is for a four year old. She got in the shower, requested Jago get in too, washed herself and her own hair and helped him too. What an amazing little person. Sometimes siblings have to grow up so much more quickly out of necessity. My little girl is becoming so independent in so many ways.

Although this time of night is often a time I dread, especially if I am without Ollie, the end result is always one of calm and love. Honestly, it takes forever to get all three of them down. Part of the reason though, is that on top of all of the above plus reading books, Ollie and I both lay on each of their beds individually for a cuddle. It is a few minutes to tell each one of them that I love them and to talk about anything special to them (positive or negative) from their day. We talk about how they are feeling, who they played with and what was the best bit of their day.

GROUNDHOG DAY

By this time, Freddie is usually calm and back to his happy, chilled, kind and loving self. I lay by his side and cuddle him. He tells me for the umpteenth time, who they picked up on the bus on the way to school, about the big blue car and having dinner in the dinner hall. We have a lot of repetition in our conversations. Sometimes it can feel like Groundhog Day but what I remind myself, is that Freddie wants to communicate verbally so much so we encourage it and try to expand upon it. Once upon a time, we didn’t know if he would ever have spoken language. Taking that little extra time with each of my children has really helped bond us together in what is a very chaotic household.

Calm is resumed. I can leave their room knowing that no matter what, they know I love them.

Phew, where is the Gin?

Undiagnosed Children’s Day 2017

On April 6th, I attended the quarterly learning session at the Horton General Hospital – Oxford University Hospitals, to present to an audience of Medical Professionals. I spoke to them about my son Freddie and what it means to be disabled/ have special needs and to be undiagnosed. Having no known reason for your difficulties and the challenges we face as a family.

I shared our story to highlight the amazing work carried out by SWAN UK, supporting families whose children have no official diagnosis. SWAN UK is the ONLY DEDICATED SUPPORT NETWORK available for families like mine. It is really important that as many medical professionals as possible, learn more about the undiagnosed community and that there is support out there for those families.

I didn’t find SWAN UK until Freddie was two years old. Those first two years were incredibly isolating and frightening. They were also frustrating. I spent a huge amount of time on ‘Dr Google’ looking for the answers and looking for ‘another Freddie’. I wanted to know we weren’t alone and I wanted to know his prognosis. Constantly wondering if your child if life limited and how or if he will continue to progress is so stressful. I have now found others similar children, in presentation, to Freddie but as yet we still have no prognosis.

The Stats

Did you know that around 6,000 children are born each year in the UK without a diagnosis to explain their disabilities and special needs?

Around 50% of the children having Genetic Testing  through The NHS won’t receive a confirmed diagnosis.

Approximately 30-50% of children with severe learning disabilities/congenital abnormalities may not have a diagnosis to explain the cause of their disabilities.

The Support

SWAN UK offer 24/7 support to families at home and in hospital.

We run regular events to bring families together and make precious memories. Those events also allow siblings to make new friends who understand.

SWAN UK provides a lot of educational tools for both professionals and the families they support . This helps improve services so all families receive high quality coordinated care  and appropriate testing/treatment. This is often very difficult to achieve without a diagnosis and coordinated care.

Undiagnosed Children’s Day 2017

We are in the month leading up to Undiagnosed Children’s Day on April 28th. On this day, SWAN UK (Syndromes Without a Name) will be highlighting all the services they provide to support undiagnosed families. We need to raise  money to continue this support and we have another big target for 2017.

There are many many families out there living without a diagnosis and without support, who could benefit from being a part of SWAN UK. We know they are out there, we just don’t know where. Our target is to find them and double our membership. SWAK UK wants to support as many families as possible.

Thanks to The Horton General Hospital and big thanks to Clay Lowe for filming and editing my talk.

Better Together! SEND conference in Warwickshire

On May 13th I am attending a brilliant SEND information day, Better Together! Conference. It is being set up and run by the team at Family Action and being held at Ashlawn School in Rugby, Warwickshire. It is open to all parents/carers and professionals who would like to find out more about supporting children and young people with special educational needs and disabilities (SEND) in Warwickshire.

Workshops on the day
I am going to be running two workshops on the day, in conjunction with Entrust Care Partnership.
My workshops are focusing on Getting Your Voice Heard. It is for all parents/carers who find it a challenge attending meetings with professionals, especially in medical, educational and social services settings. We will be looking at tools and techniques to help you focus and be in a positive state of mind. We will also be working on a process of how to plan well-formed and realistic outcomes and goals. This will help you achieve the best possible result for you and your child.

Other workshops you can attend on the day are:
Who’s Looking After You? Wellbeing and self care for Parents and Carers.
Meeting Your Child’s Sensory Needs.
ADHD Awareness for Parents.
ASD and Family Relationships.
Mental Health Awareness.

There are also some guest speakers on the day including British Paralympic Swimmer, Fran Williamson.

You can book a place at the Better Together! Conference and select two of the above workshops to attend on the day by visiting their Eventbrite page.

Places are limited so book quickly.

Hope to see you there.

 

A Guide to Planning your Goals

When we talk about well formed outcomes, it is really just another phrase for the goals we want to achieve. It’s a bit like setting an agenda for a business meeting.

The reason for doing this preparation and setting out your goals in advance of your meeting or phone call, are to give you time to breathe. Get all your thoughts down on paper, streamline them and attend with a clear head. It won’t take away your feelings or emotions and I can’t promise you won’t still cry but you will get what you need out of the meeting and that will be a positive outcome. By knowing what you want and what you need to discuss it will provide you with a calm empowered feeling.

During the workshop, we talked about getting into a good frame of mind/resourceful state. If the thought of doing this goal exercise makes you feel stressed, then using that technique before you proceed could really help.

In order to define your goals, it is a good idea to work through each one of the following points.

  1. What do I want? State it POSITIVELY. Choose 3 goals, more if you have them.

It is very easy to think about what we don’t want or what we think we can’t achieve. It used to be very easy for me to say “I don’t want to come away from this meeting with the Neurologist, without having understood x,y &z.” I decided, although just words, I would change my internal dialogue to “I want to come away from this meeting with the Neurologist having understood x,y & Z.” There is a subtle difference. The difference is the positive framing and that I have now (without probably realising it) made a commitment to myself. I will only leave the meeting when I have the information I need.

2.   As yourself, What do I need to achieve these goals?

You might not know the answers but give it some thought. It helps you be prepared and it might mean you need to do some research before the meeting. It could be anything from, buy in from the therapist, a case study to put forward as leverage, evidence or confirmation of available budget.

3.   What is REALISTIC to achieve at this meeting?

Find out who you are meeting with. It is ok to ask the receptionist or their colleague what the persons job title is and what their responsibilities are. Don’t forget, they all know what your position is. Parent of the child you are there to discuss and that child’s EXPERT. (What they don’t yet realise is that you are also a Velvet Bulldozer.)

If you are meeting with the head of department, you are are more likely to receive a definite answer or the information you need. If you are meeting with the junior, you most likely won’t. It might therefore be more realistic to ensure that you have been heard, notes have been taken and a date has been agreed for when you will receive an answer. Agree the next step. If you are not meeting the decision maker, always ask who that is.

You can’t fail at this. There really is no such thing as failure when you are trying your best. Every small step is a step in the right direction. Don’t doubt yourself. In my mind, the only time we can fail is when we take no action at all.

A couple of brilliant points that were shared in the workshops for assisting with these meetings were:

Taking a friend or relative with you. Perhaps someone who is impartial. It isn’t always easy to remember everything or write everything down. Another pair of eyes and ears can be really beneficial.

If you do find it a challenge to recall everything and you perhaps you don’t have a buddy to take with you, you could record the meeting. Tell the people you are seeing that you need to do this and the reasons why and there should be no reason why it wouldn’t be allowed.

You’ve got this!

 

 

 

The Velvets

My first two How to be a Velvet Bulldozer workshops, in conjunction with Entrust Care Partnership, have been great. I have met some truly incredible parents and learnt a lot from them too.

Lynne and I received fantastic and positive feedback from the sessions. It has cemented it in my mind that the topics we discussed, which have always been useful to me are also useful for others. Thank you all for your support. Here is some of the feedback.

“Excellent”

“Very empowering, more please”

“Lovely relaxed environment and knowledgeable speaker”

“Calm approach, not rushed, worthwhile”

“Thank you so much Aimee and Lynne. Well presented details spoken confidently. There is definitely a gap in the market for supporting parents of children with disabilities.”

“Great session, want more”

“Really helpful, feeling more confident”

“Thank you to Entrust for all the support you offer”

It was such a comfortable and supportive atmosphere where people felt able to share  their thoughts and feelings openly. I think we just needed more time to talk and share.

Anyone who attends one of our workshops or works with me directly, perhaps 1;1, is invited to join our ‘secret’ group The Velvets. It’s a safe and confidential space to share our successes, talk through our challenges and offer support and advice to each other plus I will be sharing more tips along the way.

The goal of the workshops and our group is to share tools and techniques across the board with all parents and carers of children with special needs and disabilities to empower them along this path.

Do get in touch if you are interested in learning and talking more about how to manage your emotions and get into a positive (state) frame of mind, how to plan goals for meetings, why it is important to take care of yourself and the impact of not doing so. Acceptance, letting go and deciding which areas to focus or not. Did you know, it is ok to choose NOT to take on some of the challenges presented to us. You can choose to throw that report in the bin. You really can.

As always, a big shout out to Sandy Rows brilliant book, Surviving the Special Educational Needs System – How to be a Velvet Bulldozer, for the inspiration for the workshop title. Everyone should own a copy.

No More Floor Campaign

Francesca Anker and Emily Naismith are two ladies on a mission.

The mission is to raise money to have a Changing Places facility installed in the Priors Shopping Centre in Leamington Spa. Raising money for a toilet? You would think there were enough toilets around wouldn’t you. Well, there are, just not for children like Francesca’s, Emily’s or mine and not for adults with special needs and disabilities either.

 

The age old story for our families is either that you don’t go out, you cut the outing short, your child has to remain in their own faeces until you do get home, or you lay your child or the adult you are caring for a on a filthy floor. The same floor most people wouldn’t dare to put their handbag down on. Often covered in mud, urine and occasionally faeces.

I know that I wouldn’t voluntarily lay down in a public toilet. I don’t think I have ever, even as a teenager, been drunk enough to think that was a good idea. Therefore, I’m certainly not going to lay Freddie down in there.

Our families need a larger area, a changing bench, preferably one that can be automatically raised and lowered, a hoist, clean and hygienic surroundings. The usual disabled toilets you see are often in the same filthy state and are really only compatible to those who can independently lift themselves from their wheelchair or with some assistance. Not everyone lives with that type of disability.

All we want is dignity for our children, the ability to enjoy going out with friends and family without worry and the equipment that means we as parents and carers won’t have back injury after back injury lifting those we care for. Is it really too much to ask for?  Can you imagine if the rest of the population had to wait until they got home to use the toilet? What no public convenience I hear you cry?

The reality is that all it takes, is roughly the size of a car parking space. You can’t believe that in every town and city we haven’t got that much space to spare? Vaila Morrison, Blogger at The Inclusive Home (BAPS SEND BLOG AWARDS Finalist 2017) is working hard on this campaign too. Vaila is an Architect and mother. Passionate about sustainable and inclusive design. You can read more about her campaign here.

Please, please support this brilliant cause in any way you can. You can follow the No More Floor Campaign on their Facebook page or on their website No More Floor Campaign and you can also read about the Changing Places campaign here.

No More Floor are running a Spring Bonanza to raise money for the facilities needed. It is at Lillington Primary School on April 2nd between 12pm-4pm. It is just £1 per adult and free for children. It sounds like it will be a great fun day out. Please go along and support them.

 

It’s a Miracle! Freddie is taking his first steps

Today is a happy anniversary in our house. On this day in 2014, Freddie took his very first and very wobbly unaided steps. He was 2 years, 9 months and 20 days old.

I remember when and where all of my children took their first steps and each time was so exciting but this was a true miracle. We had been advised at one time that he may never walk at all. Our elation and emotion was indescribable.

Ollie had taken Freddie upstairs to start getting ready for bed. Next thing, I hear is him shouting me to come quickly. Freddie was taking his first step on the landing. He had literally no balance but he had done it. Tears pouring down my face and laughter coming from us all. Freddie was so excited and laughing too. The more we cheered, the more he tried to do it. This was the beginning of some form of independence for him.

INDEPENDENCE 

Freddie learning to walk fully independently took quite a few months, close to a year, made especially hard by his low muscle tone and lack of balance. However, with intense Physio, Hippotherapy, Rebound Therapy, the Snowdrop Program, the aid of a Kay Walker and some specialist support shoes, he was well on his way.

MASTERING THE SKILL

He did also have to learn to get up on his feet from the floor, negotiate obstacles and work on his perception of depth. Due to the small growth size of his Cerebellum he has to work really hard everyday on Proprioception and his Vestibular System. It causes him to be pretty wobbly and loose balance often. It possibly also accounts for his difficulties with speech. Learning and mastering is ongoing. We are currently working on getting up and down steps and ascending the stairs. I would love him to be walking up rather than climbing but he is proving his independence which is the main thing.

This year, pushing along to his sixth birthday, he has been attempting to run, which is fantastic. I don’t think we are going to have the next Usain Bolt on our hands but he is doing it and it makes him really happy. He still gets very tired, so we take a buggy with us when we are out. He can also be a danger to himself, not following instructions and refusing to hold your hand at times. We have to be extremely vigilant. Freddie would simply just step into the road (as he did at the weekend, just started running and frightened me half to death) no danger awareness or comprehension of road safety. So, as long as we stay safe with him and we don’t push him too far, we encourage this physical independence as much as we possibly can.

Never give up on your hopes for your children. We firmly believe Freddie can achieve anything and reach his potential with the right determination, love and support. He amazes us each and every day.

The Velvet Bulldozer wins again

I’m sat with a celebratory cup of tea and a Twirl (it’s a little early for Gin), rejoicing in Velvet Bulldozing my way into getting the provision I wanted for Freddie’s speech and language sessions at school.

LAST TIME

Last time I met with his SALT, I was informed that she thought as he was ‘doing ok’ he didn’t require the provision we had agreed on before school started last year. To say I was disappointed is an understatement. The thought of having to go in again and fight again for it was really frustrating. However, his SALT at the time was retiring so I decided we could all start a fresh. Every cloud and all that. I contacted the Head of Speech and Language for SN schools, we had met before, and expressed my desire for a meeting with the new team. I shared how I felt about the current situation and what I wanted to see happen. My well formed outcomes.

THE MEETING

The new SALT staff are very nice, a little overwhelmed with their caseload but with a caring and positive attitude. Things I knew I had in my favour were that I had an existing relationship with the Head of SALT and I like her very much. She is professional and organised, she listens and always confirms the agreed actions. She also isn’t put off my my direct nature. Phew. I went in prepared with notes and because I had set out what I wanted ahead of time, they weren’t going be surprised or unable to make a decision, positive or negative,  at the time of the meeting.

HIGH HOPES

I do have high hopes for this fresh start with a new team. I might have gone one step too far at the end and frightened the Senior SLT when I made clear (velvety clear) that I really just wanted his school team to be working together with his teachers and me and championing him every step of the way. Ensuring he reaches his potential. Anyone who isn’t on board to be his champion, probably isn’t going to work. Although a little twitchy they were all in agreement and know where I stand. Overall it was a good, positive meeting, run on friendly but professional terms. Most importantly I have hopefully got a good base for a strong working relationship and I got what I wanted for my boy. The next task is going to be an update for his new ECHP.

I know it can be emotionally and physically draining but you can all do it. Sometimes the system isn’t set up well enough to support us or our children but we all have it within us to get as much as we can. Some of you are true Superhero’s and get more than is ever thought possible.

Looking forward to our next How to be a Velvet Bulldozer workshop being hosted by Entrust Care Partnership on Thursday 23rd March in Leamington Spa.

 

(Credit to Sandy Row’s book, Surviving the Special Educational Needs System, How to be a Velvet Bulldozer for the workshop name inspiration)

The only solution is Gin

The only solution is Gin. I’m going to have to break into a new bottle right this second.

50% of the time, getting all three to bed on my own is fine. Yes they all go bonkers and have a mad hour but it’s usually ok. Last night was one of those such nights. Tonight was the other 50%. The nightmare 50%. One wanted a bath and the other two wanted a shower. Thats fine because now that we have a new shower, it’s so much easier for me to wash Freddie this way, so this would be my preferred option anyway. The tiny one is in the bath, I’m cleaning Freddie’s teeth. I hear “Uh Oh” and the bath is now completely empty with one naked toddler sitting in it shouting ‘more more’. He isn’t happy when he has to get out. Ok, I think, no problem. The other two wanted a shower anyway. Whilst getting the tiny one dressed, in comes my girly, screaming as if she has lost a limb. Almost but not quite. Playing with Freddie (how many times have I said ‘DONT play with the doors) she is running away and Freddie goes to slam the door and traps her toe underneath it. To be fair, I would probably – ok definitely – have been screaming too if that was me. Skin peeling off, blood and tears everywhere.

Once she had calmed down, a normal breath rate had resumed and I had convinced her we didn’t need to dial 999, we talked about it. She was convinced Freddie had tried to rip her toe off on purpose. Mean time, the tiny one comes running out of Bella and Freddie’s room wearing a pair of Bella’s knickers over his nappy and vest. I wish I’d had a camera. Very difficult to have a serious conversation with one upset child whilst wanting to laugh at another. Multi tasking is the only way.

Trying to help a four year old understand why her older brother doesn’t always understand the implications of his actions is tricky. I’m really trying not to weigh her down with too much information about his learning disability but it is becoming more and more apparent these conversations need to happen. We really want her to just see him as her brother Freddie, not her brother Freddie who has special needs. However, helping her to understand why he needs more help than her in certain ways is hopefully a positive step forward. Little by little. At the end, she said to me ‘I guess it’s ok, his brain doesn’t work in the same way as mine does it?’ Broke my heart a little for a number of reasons but as least I knew she sort of got it. I told her that like all of us, me included, he was still learning and sometimes he finds it hard to understand and process things. I think she still thought maybe he did it on purpose mind you. She won’t know what has hit her when Jago really starts pushing the boundaries with her.

My poor neighbours. During the hour of 6pm-7pm they would have heard blood curdling screams, me shouting like a fish wife and general pandemonium.

I hope everyone’s bedtime hour went more smoothly than ours. Cheers. Bring on the double.