When You Teach Your Child A New Swear Word!

By mid week of half term this week, I was totally and utterly mentally exhausted and had massive auditory overload. I think my name had already been said/whined about 6k times. None of them listen to anything I say. By the 8th time of “Please sit down and eat your tea” or “Please take your shoes off” or “Please get out of the bath” or “Get off your sister” or “Give it back to your brother” (you get the picture) I was pretty much loosing it.

To top it off, I’ve managed to ‘teach’ Bella to say bloody. In context. 😬 The words uttered were “Argh, this bloody Lego.”  as a half built something went crashing across the floor. Parenting WIN. Yay, go me. Oh dear! Hangs head in shame.

I wish I was one of those Earth mothers who got the whole week right, beautiful activities suitable for each child and nothing but fun and laughter. The kind who takes photos of their food maybe, for Facebook, or who always signs off with #soblessed. Come on! This is the real world. This is my real world of three children, one with special needs. Laughing, fighting, whining (A LOT), cuddles, tears (occasionally mine) and fun.

There are some fantastic, funny and lovely times but honestly, some moments are just soooooo hard. So hard in fact I decided to read a book I’ve had on my shelf for a little while The Yes Brain Child by Dr Daniel J. Siegel and Dr Tina Payne Bryson. I realised, as I was going through the book, that some of the techniques discussed are tactics I use mostly with Bella and actually for myself in prep for stressful situations, often pretty successfully. However, by Wednesday, I wasn’t in the right positive/resourceful state to access that knowledge in the moment so I had a total parenting fail. The whole day at every turn.
After Wednesday’s diabolical morning, I decided to get straight and start again. I tried the Yes Brain technique with Jago and bingo. It worked. I doubt it will work every time but by the end of this week I am feeling far more in control of myself and able to parent better. Sometimes life just gets a bit overwhelming there for a moment doesn’t it?

The great bits of this week. Bella learning to ride her bike and Freddie being able to participate in this regular family activity. Going to the theatre with friends to see The Ginger Bread Man and the smiles on the children’s faces. A very lovely friend taking time to check in with me, recognising  I was overloaded.
Seeing how pleased my grandparents were to spend a little time with the children. Taking Freddie to a friends party and seeing how much he truly enjoyed himself and how pleased his friends were to see him. It really made my heart swell. He cracked me up at the end. No inhibitions about asking if there was a party bag. Little monkey. I had a really great time with him.  Plus, Jago has taken to calling me ‘Queen Mummy’, got to love a Mummy’s boy. Big bonus at the end of the week, Ollie and I get to have Friday night curry and wine with good friends and the children on a sleepover at Gogoos to give us a nights respite.

Don’t you just love it when you take about ten photos and still can’t get all three to look at the camera and smile. 

Phew. A nice dog walk in between helps to clear the mind. Five minutes meditation in the shower with the door locked each morning and Prosecco. These things all help.

I love my spirited and challenging children. Must try harder to be calmer though. Lack of sleep doesn’t help. Think I might go to one of those strange gyms each week in the run up to the summer holidays where you can just sleep for an hour to prep myself.

Just having written down the good things that have happened this week has made it feel a lot better. If you are having a tough day, write down the good things that have happened and those things you are grateful for. It gives me great clarity.

I hope everyone has got through their half term in one piece. xx

 

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

The Day We Received Freddie’s Rare Genetic Diagnosis

You know that moment when you receive a call from your child’s professional and life is at a momentary stand still? I know you know it. The slight panic, the billions of story lines running at high-speed through your head about why they would be calling you. The fuzzy feeling, slightly sick and hopeful all at the same time feeling. Those are the feelings I had when we went to our first Genetics consultation, when we received a diagnosis and when I got a call from the Genetics team yesterday. Totally out of the blue. Totally caught off guard.

Looking back, when we had Freddie, we were so naive about his disability. Even though we were told at my 20 week scan that our baby’s brain wasn’t developing correctly and we had asked tons of questions and freaked ourselves out by Googling all possibilities, it never ever occurred to us it could be something genetic.

I’m fairly sure no-one had ever suggested genetics, especially because all the tests and scans were coming back negative. That term just wasn’t a part of my vocabulary.

At our first Genetics counselling session, our second child Bella was still a tiny baby. We were asked if we thought she had any differences or difficulties? Was she developing as expected? I can still feel the cold sweat shock as I let those questions sink in. Could it be hereditary? Could we have unwittingly charged ahead with a second child without all the information to tell us if she would also have special needs? From that point on, every milestone she approached was met with caution and relief in equal measure. She was so speedy to walk and talk. She was and still is super independent.

Our two biggest concerns from that meeting were, would Freddie’s condition be life limiting for him and could Bella be a carrier? We would need to know this to give her all the information she needs as an adult to make decisions about having a family of her own.

Our biggest fear is, will a diagnosis come with a life limiting label? I just can’t bare to go there in my head but I am a pragmatic person and I crave knowledge so I need to know. I just don’t want to know.

We had been on the DDD study for a couple of years. To be honest, I never thought we would receive a diagnosis because every other test had come up negative.

The day we received the call from our Geneticist to invite us in to discuss their findings was a shock. I had been in regular contact with them, asking for any result updates. Not because it would change very much for Freddie in the present but because we wanted to try for a third child. This time we wanted to do it with a full bank of knowledge. There were no answers and we were getting further away from the time we would like to try. We took a leap of faith and went ahead. By the time that call came through, Jago was almost 12 months old.

That sick, swishy feeling came over me again. They had a diagnosis.

We then had to wait about three weeks to meet with the Doctor in person at the hospital. I tried so hard not to think about it. I couldn’t change the outcome or our choices so I thought, it is what it is and we will deal with it.

Our Geneticist was fantastic. She was calm and clear and gave us as much information as she could. We had quite a lot of questions but had we had more time, we would have asked more. It was exhausting.

Freddie is Rare.

Freddie has been diagnosed with a rare genetic condition. TUBA 1A. At the time of receiving the diagnosis, there were only a handful of other children known to have TUBA 1A in the UK. A Rare Disease is defined by the European Union as one that affects less than 5 in 10,000.

One of those children was deceased.

I don’t know if that child had other medical issues or not. I don’t know the reason for death. I just know, I now have to try to keep my head when this knowledge creeps back into my conscious mind. Practically talking, Freddie is medically healthy and although there are issues, they don’t have any life threatening concerns right now. That is how I want it to stay.

It is always a good idea to have two of you attend the results meeting. Often what your hear is a version of what was actually said. Thankfully we were given some paperwork and a letter confirming the outline of the conversation. It turns out that Ollie heard something slightly different to me. We were told it was genetic. We were told they had looked at mine and Ollie’s genes too. There were no correlations with me. There were some gene changes in Ollie that Freddie shares BUT they are NOT anything to do with his diagnosis. Ollie just heard the first bit. For around two months he never said a word to me. He spent that time thinking it was because of him. It was only when we read the diagnosis paper together that he realised it was a De Novo change. Occurring in Freddie for the first time. He carried that stress and sadness unnecessarily.

Yesterday, caught totally off guard whilst chatting to a friend, the phone went. It was our geneticist. The slight panic, the billions of story lines running at high-speed through my head about why she would be calling me. The fuzzy feeling, slightly sick and hopeful all at the same time feeling. Those are the feelings I had again. Was she going to say they had found a connection to his diagnosis being life limiting?

Thankfully, the call was to say there have been some more children diagnosed and the DDD Study want to write a paper in conjunction with the various Geneticists around the country. There is so little known and so little literature about TUBA 1A that this would be the first real collection of data and information to help future families. Would we be interested and happy to have Freddie included in the paper? Yes. A thousand times yes.

If this knowledge had been available when I was pregnant with Freddie or when we had him it could have provided so many unanswered questions. If we can help another family in the future not to feel as alone and isolated as we did, it will be worth it.

I still don’t have any answers about Freddie’s prognosis as he marches ever closer to his teenage years and adult hood. I have to just keep everything crossed that as more knowledge is formed, nothing presents itself with a life limiting label.

Freddie Is Rocking The Human Connection

A few days ago, I posted a video on my Facebook page from Special Books By Special Kids. What they talked about immediately hit me. It was about how everyone, no matter if they are neuro-diverse  or otherwise have a desire for connection and community. I shared it because he is a fantastic example of a fantastic human being. He is patient, kind and open.

It really wasn’t until a couple of days later that I was thinking about what his friend/student was doing. He talked about how he was asking questions to which he already knew the answer. Why was he doing this? Chris talked about realising he was doing it to feel a connection. It was perhaps difficult for him ask questions and start a conversation about something in Chris’ world but he knew he could start a conversation with something he know about.

Mum. Mum. Mum. Mum. Mum.

It made me think a little more about Freddie. Anyone one who has ever spent any time with Freddie will know that he likes to talk. They will also know he likes to say their name A LOT. Once he has learnt it, thats it. I often find myself explaining, even when people have known him some time, that he loves to talk but he doesn’t have a lot of language. So, in order to communicate, he uses what he knows, over and over. It’s also how I explain it to myself when he has asked me for the 30th time that day “Where Daddy gone?” when he knows he is at work. The other one is in the car, asking me every time we change direction, “why go this way?” Argh – because its how we get to Grandmas/the pool/a friends house/the supermarket etc. The latest one is shouting at the top of his voice, “Hello Mummy, Hello Daddy, Hello Bella, Hello Jago” all at once even if we are not all with him. My boy has literally no volume control. Ha Ha.

Patience In Bundles

I have had to learn patience in bundles. Imagine being asked the same handful of questions over and over and over again, all day long. It is really hard work and a little bit like torture but I try to smile and answer him each time as if he hasn’t just asked me. I want to encourage him to use his language and increase it, which he is doing slowly but surely. Often though, when he asks “where Daddy gone?” I ask if he knows and he pretty much always does. Then we can start to elaborate on what he knows. I’ll ask him, who does he work with or has he gone in his car or in someone else’s? What colour is the car? etc. Then we can communicate on a deeper level.

Although I know all of this about Freddie and I encourage him to talk, I had never really thought about it being for connection. True connection and what that means to us as humans. I look at how our dog communicates with us with no human language and all the ways we know what he wants or needs. It’s a basic human desire to be connected. I can see that Freddie’s desire for connection and community is huge.

Funny how sometimes you see something but don’t truly see it at first. Freddie is rocking the human connection.

“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