Month: November 2017

“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.



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