Category: General

“When You Get In Your Head, You’re Dead.”

This week I was chatting to another SN Mum I met last year. We chatted about how we can defuse anger in ourselves and in others.

It’s so easy to listen to that internal narrative. You are angry, upset, irrational maybe and totally focussed on the thing that is causing you stress. It might be the unsuccessful meeting you attended this week, the annoying letter discharging your child from a service  which they clearly shouldn’t have been (that was me last week) or the ‘well meaning’ comment from another parent/relative. You know the kind, right?

“When you get in your head, you’re dead.” Tony Robbins

You are so focussed, going over and over the experience in your mind and not seeing a way out of it – you are in your head totally.  One of the best ways out of this is asking yourself or others open questions. No-one wants to hear ‘Don’t be silly’, ‘It’s fine’, or ‘Well, that’s not how I see it.’ None of that is helpful is it?

This constant going over and over in your head ultimately causes us suffering.

Feelings of anger, failure or rejection are totally normal. However, if you can’t ask yourself open questions to get perspective and make a plan, those feelings can lead to self-doubt, self judgement and negativity.

Changing your narrative can lead to perspective, knowledge of what is realistic and a plan for how to move the situation forward and get out of your head.

Initially, I was fuming that the hospital had sent out a standard letter discharging Freddie from Orthotics due to a ‘missed’ appointment. I had actually tried to get hold of them to explain that we couldn’t attend between Christmas and New Year but couldn’t connect with them. So, rather than getting myself into an angry state about the ridiculous waste of time and money writing to both me and my GP and then subsequent wasted time and effort it would cause to make an appointment to see the GP to get re-listed, I got asked myself a couple of questions. Can this be easily resolved? Yes. Is it a massive deal? No. Am I prepared to just get on with contacting them? Yes.

I wrote a firm but polite email explaining and suggesting the Trust look at their protocol. I received a really pleasant email within 24 hours acknowledging the situation, advising that he had been reinstated to the register and giving me a new appointment date and time. My contact also assured me she would pass on my thoughts to management. It possibly won’t make any difference but it’s always better to highlight it than not. So, yes it was irritating but i just let it go. I got out of my head. This was something quite small really but add that to the hundreds of other irritations we all have and it can all build up in a negative way.

This is a section of what I wrote:

“I have received a letter stating that my son has been discharged from Orthotics for missing one appointment, in line with Trust Policy.I did try to call a few times to inform you that we were unable to make the appointment due to two out of the five of us in our family having a bug. There was no-one available and I wasn’t able to leave a proper message.As a frequent user of the NHS for our disabled son, I fully appreciate the cost of missed appointments and the frustration it must cause when people repeatedly miss them. My apologies that on this occasion we did not attend.  However, I would suggest that perhaps rather than wasting time and paper/postage writing to me and my GP and the further time and money for us having to re-register, it would be useful to look at our record of attendance and the patients needs. One phone call would have been sufficient for finding a solution.You will notice from his records that we have not previously missed any appointments. You will also clearly see that my son is disabled with a life long condition and will therefore most likely need these services for life.I would like you to reinstate Freddie to the surgical appliances register and I would be grateful for you to re-issue another appointment.I look forward to hearing from you with confirmation that the discharge has been lifted.”

 

Two of my three little heroes. xx

 

5 Options For Planning, Gratitude and Resilience

New Year, New Set of Plans.

Now that the holiday season has come to a close, everyone is heading back to work and school, the appointments are starting to flood in again and the possibility of overwhelm is high.

I’m planning on having a bespoke planner, diary and journal for all of us in our Mentoring Community to use in the near future but until that’s ready,  I wanted to share with you some good options for planning this year.

If you are looking for a good all rounder for a diary, a little daily gratitude to look back on and space for free flow notes and lists the 365 Daily Planner could be a good option for you.

For pure planning, appointments, targets, to do lists of who to contact and when a good diary can do the job. The Personal Daily Planner Organiser has no date constraints so you can start at any point. Simple and easy to use.

Maybe focussing on your goals is the key for this year. If so, the Inspire Now Journal would be great. Again, it has no date constraints so you can start it on whatever date you like. Think goals for your child but also goals for you to help build your emotional resilience. If you have it written down, I always think it is a bit like an agreement with yourself that you will put that time aside just for you. Book in the weekly run or walk with friends or the regular coffee meet up with a friend. Get it booked and get it  done – for you.

If 365 days of gratitude feels a bit overwhelming, ‘Natalie Fox’s 100 Days Of Gratitude Will Change Your Life‘ could be more doable. Forget the planning and focus just on those things. When days are hard and there are challenges around every corner, I find it really useful to write down at the end of each day the three things I’m grateful for. When I look back on my entries, be it something small or something big like the fact that we managed a family trip to the cinema without a meltdown which was huge progress, it all adds up. Sometimes we need to be reminded of the good and the great.

Lastly, anyone who has met me will know I do like a little bit of mindfulness and meditation. If you are totally new to this then you could start with the top line basics in this handy book, ‘The Little Book Of Mindfulness’.

Good luck. x

P.S.

If you purchase anything via the links with Amazon in my blog posts, I receive a small commission at NO added cost to you. This just helps me a little to maintain the website and continue to provide useful and empowering resources for parents and carers of children with special needs and disabilities. Thank you. x

Merry Christmas

I want to wish you all a very Merry Christmas.
Christmas can be a wonderful time of year but it’s not all like the movies is it? My three have had at least three tantrums each already, I’ve had a very cross/rude neighbour ‘pop over’ and shout at me in front of the boys (Freddie was very distressed. Merry Christmas neighbour 🙂), we haven’t prepped everything for Christmas dinner and we haven’t even got to Christmas morning yet 😬. I have had a glass of bubbles though so happy days.
If the holiday season gets stressful, your child doesn’t cope well or you are missing a loved one, sometimes it isn’t always so merry. If this is the case, I hope you are able surround yourself with kind and understanding friends and family. Try to take a few moments throughout the day to shut your eyes and breath a little (I find a locked bathroom often does the trick), be present in the moments which are special and happy so you can focus on them when things get tricky. Don’t put too much pressure on yourself or your children to ‘perform’, go easy on yourselves.
I just wanted to share a couple of pics of Freddie on his new bike. He isn’t able to ride a regular bike so we needed a specialist bike to enable him to have the freedom every child craves and the ability to join in family outings with Bella and Jago. It’s been about six months in the making from researching, fitting appointment, finding a funder to help us achieve what we so desperately wanted for our boy.
Theraplay Bikes http://www.theraplay.co.uk have been absolutely fantastic and produced a made to measure bike just for Freddie. He even picked the colour himself. At well over £1,500 we are ever grateful to the Snowball Charity for funding this amazing piece of (freedom) equipment for Freddie.
Take Care
Ax

Haircut Sir?

On Saturday, everyone went to the hairdressers. Even Teddington. No trim for him but lots of fuss. My hairdressers are so fantastic with all the children but they really get Freddie. So, the deal now is that the counter is covered in towels and Freddie is allowed to play with the water spray as much as he likes. They don’t mind at all and it means we can get his mopa-top cut with relative ease. Without this, he would be head swivelling like an owl and trying to get off the chair within about 30 seconds. Receiving compassion and understanding makes all the difference. Plus, who doesn’t like a lollipop after having their hair cut? x

 

Fantastic Friday Feeling.

Fantastic Friday Feeling.
Freddie came home today with a sticker for Wow of The Week. He was able to use his imagination in play during forest school. This is MASSIVE.
We have, for years, tried to encourage pretend play and imagination during play to help with his understanding, language level and play level. I had all but given up and resigned myself to the fact he just wasn’t in to it and perhaps it wasn’t something he understood or enjoyed. Plus, as his language develops I have focused on it less. What a surprise!Even if we don’t really witness it again or perhaps for a long time, we will still always know it has been possible. That is the thing with Freddie. We always believe anything is possible. Xx

“Well, if your son needs an adjusted curriculum, he shouldn’t be in mainstream school!

When we moved out of town and into a village, Freddie was seven months old. We knew he wasn’t developing typically but the overwhelm of appointments and therapy hadn’t really kicked in yet. We were still a little in denial and our romantic vision was that we would spend the next 3 years or so working hard to help him achieve as much as possible and he would have a place at our local mainstream primary school. I would walk the dog and Freddie along the village paths, kiss him goodby and hear all about his day at pick up time.

When his physio suggested we apply for the special needs nursery/pre-school, 30  minutes away, we were crushed. My first thought was no way. That wasn’t how we had planned it. Plus, at the extremely young age of two, we would have to let him go off on a bus or a taxi for the journey there and back all on his own. Learning to trust was a big thing. It wasn’t feasible for me to take him and collect him with another small child in another setting. This was a crushing blow. We went to visit the special school and within just two minutes, I knew this was that most amazing educational facility. He had to get a place. We were fortunate to receive confirmation that he had been accepted. What a relief.

I also enrolled him in the village pre-school for two afternoons a week. This process wasn’t as easy. No experience of children with special needs, no provision, no possibility of getting a 1-2-1 for him to access the two hour sessions. I think the manager was pretty overwhelmed with the list of his needs. Plus they wouldn’t take on any personal care. Not very inclusive. Thankfully, Entrust Care Partnership came to the rescue and provided a fantastic lady to support him once a week and one of his amazing support teachers at the special nursery, volunteered to attend the other session. We wanted him to have inclusion in the local community. It was important that he was known and that his peers would talk to him or wave. It was important that when Bella went to pre-school, it was known that she had an older bother and everyone was included. He did enjoy it, made a good friend, the children were kind and accepting and he got a lot out of the sessions with the right support. He was even in the nativity play. So emotional watching this. An amazing experience for me to have as a parent.  The only way for inclusion to happen in the community is to be seen, be real and to educate everyone.

Still perhaps slightly in denial, we went along to a meeting at the local mainstream primary with the then Head. We shared our aspirations for Freddie and his needs and we were met with a very disinterested response. I asked if they would be able to provide (which they are obliged to) a 1-2-1 for him to support him physically and with his learning. I also asked if they would adjust the curriculum (which they are obliged to do) so that he could reach it cognitively and keep progressing. These questions were met with “I would hope we could get a one to one but it’s not a definite” and “If he can’t work at the pace of a mainstream school and needs an adjusted curriculum, he shouldn’t be in mainstream school.” And that was that. Not exactly what I would call inclusion.

Thankfully there is a new Head there now and Bella is thriving at the school.

As time went on, it was clear that Freddies needs were too great for a mainstream school and that if we were lucky, he would be offered a place to stay on at the Special School. He is now in year two and adores it. Every day he waits at the kitchen window for his escort to collect  him for the bus ride. He knows all the children’s names and in which order they are collected. Such a relief that he likes it. Anyone working at the school, including members of the office and the front desk have to learn the name of each and every child and each child is greeted  personally as they enter the school. It’s so personal and caring. Here he is on his first day in Reception.

In his special school he has so many opportunities he wouldn’t have had at our local mainstream and for that I am grateful. He has Hydrotherapy twice a week, access to Rebound Therapy, a Sensory room, Soft Play room, quiet spaces, amazing outdoor facilities, forest school each week, music, arts, trips out. The list goes on. Proper changing facilities and a high ratio of staff to pupils. They all know Makaton so they could communicate with him before his words started to emerge. The class numbers are small by comparison so each child is seen as a true individual and can be taught as such. The whole school is on a very adjusted curriculum but they still follow the path and help them to achieve their individual potential. No child is left behind.

Bella is coming home with reading books and talking about how the body works and maths and so much more. Freddie isn’t there and may not ever be but he is starting to form letters in his writing and has full alphabet recognition plus he can count a little. He is progressing so well. Freddie’s focus is on personal independence, communication and progression generally.

There are so many children out there not in full time education.  Many have been refused an EHCP which recognises their needs and ensures their educational setting commits to the provisions needed. There aren’t enough Special School places and many mainstream schools simply can’t cope and don’t have adequate experience to help our children achieve their potential. Many children have been excluded and their parents have had to resort to home schooling. How is it that in 2017, we still have so many children unable to access education in the UK? I have met so many parents whilst doing my workshops and talks who are going through this exact challenge. The problem is huge. The stress it cause the families is huge and there is a massive breakdown of support.

This week the BBC is covering  a number of stories around SEND education, the legal requirements, what the Government are proposing and where these families are being let down. Here is one of the latest articles on this topic from the BBC, talking about a parent who felt she had no choice but to home school her daughter who has Autism and ADHD but has been refused an EHCP.

xx

 

It’s Always Such A Battle!

Battle, fight and Crisis are words I try to steer clear of.

I heard that phrase, ‘It’s a battle’ all too often when my my father was ‘Battling Cancer’. The brave warriors, “It is a real fight”, “Fighting tooth and nail to get what we need.” These are words and phrases used every day by so many and I completely understand why.

Anyone who has attended an Aimee Mann Mentoring workshop or talk will know that I am passionate about NOT using those words, amongst others and trying to reframe the dialogue.

“Why?” I hear you shouting from the other side. “It IS a battle. Are you crazy?”

Well, its debatable but I function so much better when I don’t engage in this kind of destructive language. I also make sure I don’t say it in front of Freddie or Bella and Jago. Our words, are their words.

I first listened to something on Youtube a long time ago about the power of words and I remember writing about the connotations of language in one of my Uni pieces. It has always interested me but the more time I spend in the world of disability, the more I think about it.

It isn’t just that it is negative in general, it is actually harmful to you. It can change your genetic makeup.

“And the more you stay focused on negative words and thoughts, the more you can actually damage key structures that regulate your memory, feelings and emotions. You may disrupt your sleep, your appetite and they way your brain regulates happiness, longevity and health.”

“Thats how powerful a single negative word or phrase can be.”

Words Can Change Your Brain. Andrew Newberg, M.D. and Mark Robert Waldman

Not using the words doesn’t take away the situation, the stress or heartbreak you are experiencing but it does help to temper it and not allow situations and feelings to ruminate and sink you deeper.

 

Would it surprise you to know that water exposed to loving and positive words, reacts and shapes differently to water exposed to hateful and negative words?

Dr Maseru Emoto spent many years studying this very phenomenon. He wrote about it in his book, The Hidden Messages in Water He conducted hundreds of studies where water was exposed to loving verbal communication, positive written words and beautiful music. At the point of freezing he was able to take high-speed photographs of the crystals that formed. This water produced brilliant  and complicated snowflake like patterns.

On the reverse of this, the water exposed to hateful talk, negative written words & pictures and harsh music, produced incomplete, asymmetrical patterns. He was able to repeat these findings over and over again.

People  are 70% water and so is the earth. Everything has a vibration. It makes perfect sense to me that the negative vibrations caused by constantly using narrative like battle, fight and crisis can ruminate and cause your body and your mind to react painfully.

Don’t get me wrong. The challenges we face in securing the services and therapies we needs for our children are huge. They can be all consuming if we let them. They can be detrimental to us and our children when  it takes such a long time or doesn’t work out they way we want it to. However, looking after ourselves and building good working relationships with the people who can help facilitate what we need, is crucial. Letting go of some of the things we can’t control and that don’t serve us to getting to the place we need to, is also vital in maintaining health and well being.

Taking down the amount of negative talk has certainly helped me. xx

 

Why We Went On To Have Two More Children After Having A Child With Special Needs

A friend asked me this weekend why we decided to have three children? There was no sarcasm or malice in the question. Just simply wondering and genuinely interested. He knows that Freddie has Additional Needs and wondered how we cope?

Sometimes ignorance is bliss.

When we found out at my 20 week scan that Freddie’s brain wasn’t developing correctly and after all the scans and tests that followed until his pre-term birth, our focus was just getting him here safely. We had no diagnosis, didn’t have a clue what the future would hold and had never really thought about anything genetic. However, we had always wanted two children and I think that because we could ‘hide’ Freddie’s needs when he was a baby and pretend to ourselves that he was going to be ok, we decided to go for it pretty quickly. Living in denial was probably quite blissful at the time. I became pregnant with Bella when he was only nine months old. Perhaps if we had left it longer, we might have made different decisions? I don’t know. It was around this time that the hundreds of appointments and therapy sessions really kicked in. I was one exhausted pregnant lady. We got through it though and were so excited to have our beautiful little girl.

When Bella was around three months old, we were invited to attend genetics counselling. When I look back, we were so naive and innocent and actually right in the centre of total chaos. The Dr asked how our new baby was, did we think she was developing typically and did she have any dysmorphic features? Time just stood still. I can recall every prickle of fear as if I were in the room now. We honestly never considered for a moment that Freddie’s needs could be hereditary and we also didn’t know there was such as thing as De Novo Genetic changes that occur. No-one had ever spoken of this other than the more well known syndromes they tested for regularly. What a shock that was.

We went onto the DDD study and waited.

During this time, I never threw away any of their baby things. Hoarded everything. We were only having two so what was I thinking? I called the geneticist a number of times hoping the results would be round the corner. Nothing. Our main concern was finding an answer to enable us to give Bella all the information she would need for when her time comes to be a mum. If that is the path she chooses. We also wanted (and didn’t want) to know if Freddie’s condition was life limiting.

As Bella was approaching 18 moths, I realised she needed back up. I don’t have any brothers or sisters and as I’ve experienced more of life’s riches and heartbreaks, it would have been good to have that back up. So grateful I have Ollie.

We needed safety in numbers.

I didn’t  want Bella to feel pressure when she is older, perhaps when Ollie and I are no longer here. It’s tough managing these challenges alone.  Although risky, without a diagnosis, we weighed up all the options and all the solutions open to us. After a lot of discussion, we decided to go ahead and try for a third baby. Freddie’s rare diagnosis of TUBA 1A came after Jago was born.

I’m not really sure how Jago will take it if he realises he was back up? I’m hoping he will know he was born from a deep place of love for our whole family unit. He has made us complete and we adore every inch of him as we do Bella and Freddie. We are extremely lucky to have three children. I hope they remain close as they grow, lean into each other and realise they now have safety in numbers.

Enough Already.

Firstly. I totally love a good firework show but enough already. Teddington has been literally panting in my face for 3 hours now and tripping me up at every given opportunity.
Secondly. I’m absolutely sure the children all save up the hysteria when they know I’m flying solo at bed time.
I have been dealing with a panting dog, a cling on Jago, an extremely excited Bella having opened some fabulous gifts this weekend from her early birthday party and a Freddie. Freddie fell awkwardly whilst we were at My mum-in-laws and spent quite a while screaming. Very loudly. He was so shaken and couldn’t bare weight properly. Typical when I’ve got to get all three home in the dark. We made it home but Fred still couldn’t walk alone and was still screaming. Any neighbours that could hear us arriving home, that’s what was going on.
Anyway, eventually got them all into bed in one piece. Full check over of Freddie, no protruding bones, no bruising and no hot or red areas. Hopefully just muscular. It’s so so difficult when he can’t articulate well enough with enough language to really tell me what and how he is feeling. 🙁 Don’t fancy a trip to a&e. Argh. Plus, he has had one wobbly tooth for two weeks. I’ve been watching it all day, I take my eye off him for five minutes to be with Bella, check him and it’s come out. Nowhere to be found. He told me he swallowed it! Typical. I think it’s going to be my bed time shortly.
Fingers crossed my boy is ok and can walk properly in the morning. Oh little Freddie. X

 

Violent & Challenging Behaviour

Yvonne Newbold is an absolute inspiration and a true champion for disabled children and their families. She is the Author of The SPECIAL PARENTS Handbook and a parent of three children all with Special Needs. She shares her highs, lows and techniques in this book. 
Violent and Challenging Behaviour
A rarely discussed topic is that of children and young adults who have challenging and violent behaviour. Most often towards their mother and/or other care givers. It has been a bit of a taboo subject until recently. Parents feel shame that their child beats them or destroys their home. It isn’t because their children are ‘bad’ or their parenting is poor. It is often because they find it so difficult to express themselves for a magnitude of reasons and it is most common in children with learning difficulties.
Yvonne appeared on the Victoria Derbyshire show on the BBC this week along with some fellow parents who’s children have Violent & Challenging Behaviour VCB. She is working tirelessly to break the silence of this heartbreaking situation for so many families. Yvonne has set up a private Facebook support group and she is running a series of workshops on this topic.
 
Workshops
Autism & Learning Disability Behaviour Help
Two Realistic and Down-to-Earth Sessions in One Event for Parents, Carers & those who work with Children, Young Adults & Families
How to Reduce Violent & Challenging Behaviour
AND
Puberty & Sexuality, & its impact on Autism & Learning Disabilities
If this is something that challenges you at home then please do take a look at the events. Here is a link to Eventbrite for the 25th November 2017 and 6th January 2018
https://www.eventbrite.co.uk/e/autism-learning-disabilities-overcoming-the-challenges-tickets-37690110134?aff=efbevent
What a fantastic lady.