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.
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
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.
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
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.
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
October is a really shitty month for me. A difficult, sad and stressful month. The 23rd October brings around again the anniversary of my Dad dying, followed by his birthday on the 24th. A double whammy.
When I’m talking about Emotional Resilience, on here, Facebook or at my workshops, I am usually referencing it with regard to having a child with Special Needs. However, something I share is that it is also something I have been practicing in other areas of my life. Often that resilience is needed to cope with the big life events like watching your father die and at other times it’s dealing with smaller situations or perhaps how you allow others to make you feel.
Nine years on and in many ways, it doesn’t feel any easier. I’m not sure it ever will. However, I know the signs better now and have strategies to see me through. I arrived home from school drop off and walking the dog on wednesday morning. Ollie just knew, straight away, that I was crumbling. I hadn’t really been thinking about Dad or feeling sad but suddenly the swirl of emotion started to bubble up from deep inside. I totally believe having a god cry is essential. Let it all out and start again. Although, I hate crying because honestly, I don’t look or feel good for it. I’m one of those red, blotchy, puffy frog eye types of criers. Not attractive and requires multiple re-applications of make-up to look reasonable.
Can’t resist a cheesy 1980’s moustache & psychedelic shorts photo. Me and my Dad at the Duxford Air Show.
Within the Getting Your Voice Heard Workshops, I talk about getting into the right state to cope with upcoming events/meetings etc. Within that practice is understanding that we experience life with all of our senses – taste, sight, touch, smell and sound. This is also how we remember our experiences. That’s often why you will smell a fragrance and be reminded of a loved one or perhaps, like me, the smell of Skips reminds you of the time you ate too many as a child and vomited. Never ate them again I can assure you.
This is what was happening to me. Unfortunately my senses weren’t allowing me to get into a positive state this time. The whole month of October was spent going to and from the hospice on a daily basis. Everything about the month of October reminds me and takes me back to that point. Walking the dog, how the air smells, the mostly sunny days, dew on the grass, cool in the evening, conkers on the floor and the light of the day, the rapidly approaching decay of life and of season into Winter. It’s almost impossible to escape it.
So, although I am often taken by surprise, I am more aware and prepared for it. I advance book to see my Osteo, one of the only ways I can release the tension build up. I spend time with Ollie and the children because apart from the fact that I love them, it’s almost impossible to have two minutes to myself to get caught up in how I’m feeling. I have failed slightly this week but I’m conscious of getting an early night. Everything is so much harder to cope with when sleep deprived. I take big doses of vitamins, try to eat well (on top of the chocolate for comfort) and drink more water. Seeing friends for Prosecco also seems to help. Who knew? Getting the balance of distraction and rest is key for me.
This is how I cope when I’m dealing with more stressful times with Freddie too, which is why we talk about all of these things to understand what emotional resilience is and why we need it.
The past few weeks have also required me to try to impart some of this to my four year old, Bella, as she started school this September. New environment, new friendship circles, new rules – new everything. It’s mostly extremely positive and exciting so far but unfortunately, there has been an older child who has been ‘picking on’ Bella and her classmates. Nothing particularly serious but a little daunting non the less when you are only four years old. We have talked about how she can handle it and what course of action to take. I too have, of course, raised it with her teacher. I hope I’m giving her the right tools to deal with it, especially if at any point it becomes more serious. Something I am incredibly mindful of though is that children and adults for that matter, rarely act out unless they are struggling. Perhaps the child is unhappy, worried or fearful about something and feels more in control when behaving in this way? Who knows? What I do know is that the child needs compassion and support. The earlier it is spotted and worked through, the better for everyone. I also know how I would feel if it was my child behaving in this way. I would be gutted. It’s possible for any child to start acting out for a whole variety of reasons. I’m conscious that being the sibling of a child with special needs brings with it many emotions and challenges. I can only do my best to give her the resilience tools she needs and hope for the best. If she was ‘picking on’ others I would hope for compassion towards her and to me as her mum until it could be resolved.
Emotional resilience is always a good thing to practice. We are human and humans suffer at times. We need compassion and ways to cope so that we can enjoy life during the fantastic times.
Keep an eye out for the next set of dates in November for both Getting Your Voice Heard – How to be a Velvet Bulldozer and Emotional Resilience – The Ebb & Flow of a Special Needs Parent, in conjunction with Entrust Care Partnership.
I feel like I’m living two parallel lives at the moment with Freddie and Bella. Bella just started reception and is flying. she loves all the new things she is learning and is chat chat chat about it all. I’ve even had to go to school for a lesson in Phonics and I am regularly told by Bella that I have got it wrong. “No no no. It’s not D for Daddy, it’s D for Dinosaur.” Whereas Freddie, mostly tells us about the fun things like playing bat and ball and swimming. He is learning academically at his own pace with his own targets.
I’m honestly slightly (extremely) nervous about how, as they all progress their school careers, I am going to fit in helping Freddie with his essential daily Speech Therapy, Bella with a plethora of mainstream homework (most of which I anticipate having to Google first) and get them all fed and into bed each night before they meltdown with exhaustion. Never mind how it will work when Jago gets to school! Eek.
We don’t talk a lot about academic results with Freddie, more focus on personal care and independence skills at the moment but I know School are working hard behind the scenes. Then, yesterday a lovely news piece came home in his book bag. He has been able to write an F for quite some time, he recognises his own name and he has letter recognition for all in the alphabet but that’s roughly where we plateau. Then we see he is working on the other letters in his name too. Trying so hard and doing so well. It’s just a bit of a proud moment for us really and I wanted to share his breakthrough. x
Tomorrow is Bella’s first day at BIG school. I’m excited for her and a little apprehensive maybe. I didn’t totally love school, so I hope she adores it. I’m not sad to be walking her (or driving if it’s chucking it down) to her first morning. I’m grateful.
We couldn’t be there for Freddie’s first day at school because he attends a Special Needs school. He has transport to take him there and bring him home. We missed his first morning. We didn’t get to walk him to the gate and hand him over safely to his teacher. We just had to hope everything would be ok. That was a great sadness.
So, as much as I can’t honestly believe my baby girls is so grown up and that I will have two children at school from tomorrow, I’m going to enjoy the drop off to make up for not being able to with Freddie.
She is going to rock it, I’m sure.
I’m also painfully aware that tomorrow brings the one year anniversary of RDs passing. His mummy won’t be taking him to school either. Big love to you ED. Wrapping my arms around you all. xx
A friend of mine, Sonia, (don’t kill me for mentioning you) adapted a poem, which she shared in one of our groups today. I wanted to share it with you.
Here is hoping everyones first week is a good week. x
No mother prays to deliver a child with special needs.
Just as nobody prays to die, so that they can be brought back to life with a bolt to the heart.
But, that is exactly what happens when you become the mom to a child with special needs…
a little piece of you dies, but your heart is re-born.
Any naivety left from your youth
The belief that bizarre and heartbreaking things only happen “to other people”
The notion that adults would never discriminate against a child
The concept that fighting for your child is something only needed in times of dire distress
The realization you will never have an “empty nest”
The fallacy that total relaxation actually exists
What is born?
A love like you’ve never experienced in your life
An inner strength you never knew you had
A voice deep in your gut you didn’t know was there — the voice of advocacy
Pure, unadulterated joy (reserved for milestones you never expected your child to meet)
Gratitude for what your child has and who he is, not what he lacks or who he is not
Thanks for people in your life who understand, encourage and embrace
Awe at the resiliency of your child
Respect for the kindness, compassion and protectiveness of your family.
A better you.