Love, Jean – book

A kind friend has lent me this book and I am loving it,

The book is unusual in that it is a compilation of letters written by a.Jean Ayres who pioneered Sensory Integration theory and practice to her own nephew Philip R, Erwin, Philip’s story is written in his own words and there are many fantastic chapters written by Zoe Mailoux who was one of Jean Ayres’ first research assistants.

Philip had sensory processing difficulties but was unable to be treated directly by Jean Ayres or any other OT and so he engaged in an education and consultation process with his Aunt via letter. This indirect long distance “therapy” by letter consisted of consultation and monitoring – advice and recommendations which included sensory strategies.

It was life changing for him as it has been for our family.

I am so passionate about access to SI intervention for as many children as possible because I have watched a similar transformation in Charlie. It is touching my heart to read about the impact of SI by someone who had experienced it directly and was able to write about it in his own words. It is so encouraging when the going gets tough to remember that it is worth all the effort, and this is why.

Here is an extract from the book where Philip describes how Si changed his life.

“Looking back I remember the feeling of calm that came over me as I went through the therapy regimen so long ago. Before I started scooter boarding, I felt like I was trapped in an exoskeleton. I was all corners and edges. I moved in limited, uncomfortable patterns. When my bony carapace and I bumped into unexpected objects, my hardness made compromise impossible. I had to back up and yield. I had to constantly pick routes through life that wouldn’t trap my bones and me in tight corners or dead ends out of which I would be unable to extract myself. But after scooter boarding for a while my hard, exterior shells fell away. I became suppler. When I met an obstacle I was often unable to move delicately around it, perhaps squeeze by it, or mold myself into a shape or configuration more in harmony with it. After months of therapy, I had shed and regrown my shell so many times but less and less of it grew back after each shedding.

What Jeanie and Sensory Integrative therapy did to me was to re-wire me. While I experienced little improvement in my mathematical abilities, I was able to construct strategies that circumvented my shortcomings. My brain became more organized, less threatened by all of the things that the world was asking of it. I could pay attention. With these fundamental changes, coupled with the support from my family and the validation of my teachers, I was able to utilize a host of coping skills that had previously been looked down upon.”

There is now so much evidence for life long neuro-plasticity, Philip was older than the ideal age for starting SI therapy however the results of following his programme of sensory strategies were still enormous. We often search for complicated answers, strict protocols or diets to effect change for our kids, we want a recipe that works…Philip says this about what worked for him, it made so much sense to me that I wanted to share it with you.

“In the end, sensory integration therapy, special education support, and personal validation from my family, teachers and friends were the protocol that built the positive upon the positive, put the negative into context and made it survivable, and offered boundless points of opportunity that have seen me through to this day”  

Advertisements

Learning to say ‘NO’.

This week I have been ask to think about why I find it so hard to say no…

I have not really thought about this too much before, which is probably why I keep getting myself into a mess but actually I am truly awful at saying no, I mean really, really bad at it bad at it. I have some talents but saying no is definitely not one of them. As a result I take on too much responsibility and I always seem to be doing too much. The solution is not as easy as just stopping, or starting to say no more often, I don’t even know how to slow down, never mind stop. Saying no is not something that comes naturally to me, in fact the more I think about it the more I see that it is actually something which is painfully difficult for me to do.

This morning I had my first appointment for CBT, that’s where the question came from. The doctor recommended it as a therapy after I reached crisis / burnout point back in February. Previous to that particular crisis things had been ticking along just about OK, with me keeping most of the balls in the air most of the time and most of the people happy most of the time. Then Charlie hit a phase of not sleeping through the night any more. For the 6 weeks after Christmas he managed to wake us up at some point every single night. Once awake I would lie there worrying about the million things I had to do the next day. It didn’t take long of me not sleeping before I found I could no longer keep all the balls in the air. I hit crisis point and in the end I had a meltdown at work, precisely because I had failed to say no to doing a job which I not only did not want to do but which I knew would have a negative impact on the rest of the family for days afterwards.

So here I am trying to put things back together again and figure out why it is that I get to the point that I am doing way to much and try to learn from it so that I can change my pattern of behaviour.

So far here are some of the reasons I have come up with…

Thinking Positive

I tend to think positive and I like to have a ‘Can-do’ attitude to life. I honestly believe that nothing is impossible, with prayer and hard work anything can be achieved. This is good in most situations, and has served me well over the years but unfortunately I have taken it to the extreme. My first instinct when I am asked to do anything is to think through all the possible ways that I can make it happen, I do this before I think through the consequences, or the implications. Often I have said yes in my head before I have even processed the question.

Putting others first

I often put others first, all mothers do this with their kids, but I do it with other people too. I find it really hard to make myself number one priority, I find it hard to spend money on myself but easy to spend money on friends or the kids or the house, but never me. I tend to see other people as being far more worthy of my time, effort and energy than I am.

I am a people pleaser

I love to meet other peoples needs, to do jobs for others, help others out when I can. I find it easy to empathise with other peoples situations and often end up carrying the burden for other people needlessly. I get satisfaction when I know that I have done something useful for another person.

My primary love language is ‘acts of service’. I feel loved and that my needs are being met when someone goes out of their way to do something helpful for me, and I show love most easily through helping others, its the way I connect with the world.

Guilt

When I have to say no, either when a yes would be completely impossible or I have really worked up the courage to put my foot down over something, I feel guilty afterwards, for a long time. I feel bad for the people for whom my no has had any kind of negative impact on their lives. Even if the decision is final I still try to find ways in my imagination that I can make it happen. This is exhausting and pointless but I often do it anyway.

I feel responsible

Its part of who I am, the oldest sibling, a founding trustee, a manager, a parent, a teacher, a landlady, a neighbour, a friend, a leader, a community champion. I take responsibility for so much stuff, I find it incredibly difficult to just let go, I find it really hard to “not care”

I have strong role models

I have incredible, amazing and strong women in my life as my role models. I have learnt by example that I can be a leader, that I can achieve that nothing can stand in my way. I am extremely grateful to these women, especially my mum, and Gran who have always shown incredible tenacity and strength in the face of adversity, and who lead our family by example.

But now I have to find a balance and I have to find it soon. I have to practice saying no, so I’m going to apologise to those of you who know me in real life, especially if I have to practice my new word with you, and I am sorry that for some people that will mean change. I am learning that when scripture tells us

“I can do all things through Christ who gives me strength” it doesn’t mean that I should do all things.

Saturday, trampolines and feeding therapy

Until recently I have hated Saturdays, I have been trying and failing to balance the tiredness from having worked all week, with the desire to do something fun and healthy with the kids.

I needed to find something affordable which would tick all the boxes (yes, I know that’s kind of not actually possible but I needed to try). I really wanted something that would contribute to Charlie’s sensory diet, get us out of the house and away from the computer screens, be sociable, affordable (did I already say that?) and suitable for both children. I also desperately wanted to use the time to work with Charlie on messy food play. It’s not like I was asking for much???

The need to find the right thing was driving me crazy, and I was often left feeling deflated and deeply unsatisfied with whatever new thing or place we tried. There would be meltdowns in new places, sometimes the kids often just me. We are all so busy during the week and the sense of urgency to make Saturdays count was beginning to get on my nerves and I in turn was beginning to get on everyone else’s nerves.

About 6 weeks ago we were encouraged by a friend to try leaps and bounds, which is a trampoline club especially for kids with ASD and their families. I find it scary trying new places and seeing the noise and chaos of the other kids when we got there I must have had a similar expression to a rabbit caught in headlights. But in we went anyway, and thank God when we got in there I spotted some of the friendly faces of the other wonderful ASD parents we have got to know over the last year.

leaps and bounds 1leaps and bounds 2

The kids enjoyed their first session they had 3 or 4 turns of jumping, and while they waited there were plenty of other kids to play with, space to run around and soft play blocks to build with or hide inside. The teachers are lovely and are great with the kids, helping them and teaching them new moves each week.

leaps and bounds 4leaps and bounds 5

When we got home they were happy and calm and relaxed, now you can read all you want in sensory books about the benefits of this kind of proprioceptive input and how it regulates kids nervous systems, but to see the change in action is something else. They are almost like different children.

A few hours after getting home from our first session Charlie asked if he could play in his slime! Yes play in slime, this is almost unheard of, the slime was a prize he had won in school weeks before, once he realised how messy and sticky it was he was absolutely not interested in playing with it. It had sat on the shelf in the living room for weeks until this happened.

slime
Over the weeks we have noticed again and again how the massive dose of proprioceptive input from being on the trampoline, has a huge impact on Charlie for hours afterwards, which is great because it is giving us lots of opportunities to work on feeding therapy / messy food play afterwards. We are doing our best to follow the SOS feeding therapy method of introducing Charlie to new food experiences, we use this alongside “family style” meal serving and division of responsibility at mealtimes.

Charlie’s SOS feeding programme should consist of regular sessions involving a huge amount of regulating activity, heavy work, proprioception, deep pressure, followed by some fun activities involving food. Its hard to manufacture this in an artificial way, especially when we are all tired and I am feeling anxious, but this new Saturday routine seems to be working really well for us at the moment. In the hours after trampoline club Charlie is really really happy to have a go at food prep or messy play, it is fun to watch him relaxed and happy having a go at getting his hands and face dirty.

This Saturday we made Chocolate rice crispie cakes, everyone enjoyed the activity, Charlie helped lick the bowl clean, and got chocolate on his face, another first. What was also interesting was that hours later and the next day once the effects of trampoline club had worn off he wasn’t one bit interested in eating the finished product.

 

20140407-073232.jpg

20140407-073244.jpg

20140407-073303.jpg

20140407-073312.jpg

I’m finally starting to look forward to Saturdays, the added bonus is that while the kids jump and play I get to spend lots of time with my lovely new friends. Did I tell you about all the amazing parents I have met since Charlie’s diagnosis? Honestly these are the people who save my sanity, wonderful, beautiful, honest, quality people, one of them took this photo of me….

20140406-125514.jpg

Finally, I have a food thief

20140317-112102.jpg

Yesterday the funniest thing happened, I was sitting down with a cup of coffee for 5 minutes and I decided to have a sneaky treat. I just love these yummy caramel waffles and have found that I can buy the in Aldi at less than half the price of some of the other places that sell them .

I was just tucking in to my moment of self indulgence when I heard Charlie’s little voice say “ooh, I would like to try some of that mummy!” When I got over the initial shock I handed him my treat, he took a really small nibble of the edge and declared that he liked it, and that he would be eating the rest of it.

So it was goodbye caramel waffle and hello food thief.

My husband remarked how it was just like having a one year old who suddenly became interested in pinching his parents food. Charlie has never done that before and so missed out completely on that eating milestone. I remember when he was small telling the professionals “he doesn’t steal food from my plate” I wonder if they understood that this is something kids are supposed to do?

Charlie has made great progress this month trying out different types of breads. Last week my lovely friend bought him a new type of mini gingerbread man which he asked if he could try this morning, he enjoyed the packet he had and has taken another 2 packets to school with him.

Last week his teacher told me that he had taken the class to the park to feed the ducks, he gave all the kids 50:50 bread to use, but instead of feeding the ducks all the kids including Charlie ate the bread and the poor ducks went without.

So onwards and upwards…Let hope he keeps going with his new found interest in other people’s food.

Special schools for special kids?

I wanted to write this post because I have come across a few parents recently both in real life and on the internet who are in the process of deciding on a school for their special kids. I see fear in their eyes and hear it in their voices, and I know, I really know because I was there too, no so long ago. In a place where you have to make a decision with so very many unknowns, and such huge potential consequences.

There is so little known in the wider community about what special school are like on the inside, and I keep seeing that for those who don’t have children in special-Ed there seems to be a fear of these schools, at best that these school will hold our kids back or at worst an impression that they are like 19th century institutions.

Choosing the right school for any child is a tough decision, there are so many variables and unknowns, and every school and every child is different and has different needs. I admit that the idea of not sending Charlie to the same school as his sister was extremely painful for me. Last spring during a very well managed ‘transition’ we went to look at Charlie’s current school 5 times on the first 3 occasions I cried.

This wasn’t what I imagined our lives would look like, it wasn’t the dream I had of my kids being in the same school, with their wonderful little cousins, growing up together sharing experiences and teachers.

This wasn’t at all how I imagined things would turn out.

But, at some point I had to get beyond myself and my dreams and see that what was best for my kids, might not look like my dream.

There is a strong push to keep our special kids in mainstream education for as long as possible. Some children really are better off in mainstream education, in large classes, and busy lunch rooms, with lots of opportunities for interactions with lots of different people. And some schools can make inclusion work really well, others can’t and the kids suffer as a result. I’m often asked, couldn’t he cope in mainstream? I’m sure he could ‘cope’ but who wants to cope? school isn’t about coping its about living and learning and making friends and having fun.

For us, even though Charlie had enjoyed his time in mainstream nursery, I had to think long and hard about how much energy I had left in me to fight for help for him in school. How much energy did I have to be the one supporting the school and helping them to understand his needs. And so as painful as it was we took a leap into the unknown and accepted the place we had been offered in an assessment unit of a special school.

Charlie’s term dates are longer than Lillie’s, she is a little star, and on his first day, even though she wouldn’t be going back to school for a whole week, in a show of solidarity and to help him understand what was happening she got up and put her own school uniform on. We all took him and dropped him off for his first day at his new school.

Image

Charlie had only been there a few days when the head called, to tell me that she was “interested in Charlie’s sensory processing disorder” and that she had organised for a local specialist OT to come into the school to train the whole staff on sensory processing! I cannot even put into words how different this felt. For years we had been in a place where even the special needs coordinator would tell me that because Charlie was well behaved and compliant had no difficulties. She once said ” you will never get a diagnosis” and would tell me that sensory processing disorder is not a recognised condition, that there were no funds for additional support even for children with a diagnosis of ASD or that other children needed it more.

This school is as different as night is from day, they have taken his sensory diet and are using it enthusiastically. They bought him a mini trampoline, out of school funds, to use in the classroom. They have agreed to give him protected lunch times where they will only offer his his safe foods, and one to one support with exploring new foods at other times.

Charlie has been in the assessment unit for 6 months now, it is managed by a special school and run just like one. The have small class sizes, and helpful friendly staff. I have to say that although hard accepting a place there was one of the best decisions we have ever made. Charlie is making great progress, both academically and socially he loves the school and he has lots of friends.

A few weeks ago I was struggling with something else, and to get out of myself I decided to write to Charlie’s school to thank them for everything that they have done to help and support I am sharing this letter, because I wanted to help anyone who is considering special ed to be a little less fearful about what the future may hold.

Dear staff

I just wanted to take a minute to write and say thank you so much for everything that you are doing to help and support our son. To let you know how happy he is at your school, and how this is having such a positive impact on our family.
Before we came to this school we had become accustomed to having to fight tooth and nail for every little tiny accommodation, we were given no extra support, and even the people who were supposed to be on our side would let us down failing to turn up for important meetings, not keeping to written agreements they had made with us and not returning phone calls. We often felt that nobody listened to our concerns or took them seriously. I know many many other parents who are still in having these kinds of problems and I have to say that the staff at this school make a very refreshing change to this situation.
Each member of staff that we have met has always treated us fairly, they have done their very best to listen to our concerns and help us. The staff are relaxed and competent, friendly and helpful. They always have time to stop and talk with the kids and parents. They never come across as defensive, too busy or uncaring. The children in the school reflect this positive attitude, and our son has made great progress in many areas of his development since joining you. He has become much more confident and his ability to communicate has improved significantly. It is a joy to hear him talk about “all his friends”. He loves going into school and I know that he feels safe and happy in there and he is learning lots of new things everyday.
We are grateful for the fact that the teachers and staff treat all of the children as individuals, and that even though there are children in the school with far greater needs than our son they never dismiss my concern’s or his needs as being insignificant. This is especially important to us because his disability is kind of hidden and not obvious when you first meet him and we are regularly faced with disbelieving uncaring attitudes. We want to say thank you for the efforts you have made to both understand and accommodate his sensory processing difficulties. For the training you organised for the staff, the equipment you have provided, and the extra support you have given him with his eating.
We are grateful to Mrs K who is supporting us in finding a suitable place for our son to continue his education when his time in the assessment’ unit comes to an end. We hope that when he does eventually move on at some point in the future that he will be as happy as he is here and will receive the same high quality care and teaching, although I have to say that this school will be a very hard act for any other school to follow. We want to say how we are both thankful and relieved that Mrs K helped us to finally see an educational psychologist, after 2 years of us banging on doors and getting no answer, having the report from the educational psychologist is like having a missing puzzle piece that we have been desperate to find.
We are also grateful to Mr D, Charlie’s teacher, for the love and care he shows the kids, for all the hard work and attention he put into their education. It is a delight to see how he engages with the children and how much they love him. It is great that Charlie has such a positive male role model during his early years education.
We have found this caring attitude from the school staff extends even outside of school hours. One night we were struggling to find ways to encourage Charlie to eat in Mcdonalds. When Mrs H one of the teachers from blue group arrived in the restaurant with her family, she very graciously took time out of her family meal to sit with Charlie and encourage him. It is hard to put into words how much something like this which may seem small, actually really matters.
Please be encouraged that you are doing a very important job and in our eyes you are doing it very well. Whilst we know that this is what you are paid to do we also know that positive attitudes, love, care and understanding are things that money cannot buy. Being part of this school is a huge blessing to our son and to our whole family.
Thanks Again
Sarah, Will, Lillie and Charlie
Image

The endless battle of screen time

I have started trying to write this post on many occasions, and I keep getting stuck and it never gets finished, but today I am going to try again as its something that I have really been battling with over the last year, but I finally feel like the tide is turning.

20140125-175912.jpg

I do feel like I am making some progress,  like I am beginning to win the never ending screen time war, and have finally managed to get to a point where the kids know I’m not joking when I tell them they have reached their limit and they have to turn it off.

Over the last few weeks we have finally established some very clear limits, and although the kids think I am being mean I know it will be well worth it in the end.

For a while they fought against it and complained that they were bored, my reply was “Great that’s exactly what I wanted, now go and play with your toys, or read your books, or use your imaginations, or draw or paint or make something.”

There is just so much more to do with your life and so much more to experience.

When I was a kid there was lots of time to be bored, which meant that there was also lots of time to be creative and generally get into trouble. If we were lucky there was about 1.5 hours a day of kids TV programming and Saturday morning TV was a major treat. But if you missed it you missed it and for most of the rest of the time there wasn’t really anything on TV to entertain kids. Although I do remember watching lots of documentaries and quiz shows with my dad. I loved QED and blue planet, and I think some of my love for science was born at that time.

There were also no other electronic screens to move onto when the TV was off. No computer, no phone, no ipad and very few trips to the cinema.

I can’t even imagine what it must be like to be a child with a brain that is developing now here in the 21st century when there is never ever the need to be bored. Our kids can literally be entertained 24 hours a day by a wide variety of electronic games, gadgets and screens, there is endless variety, and they are portable, in the car, in the church, in the shops there is literally nowhere where a child cannot sit and play with an electronic device.

For as long as I can remember I have been working deliberately to reduce (or more accurately to stem  the increase in) the hours that our kids spend using screens. It is super hard, I mean its like a never ending battle like shovelling snow in a blizzard and its one war that I never though I would be fighting. Over the last year since I have been reading more about sensory integration, and neuro-development it has become clear to me that no matter how hard this battle is it is one which I must keep on fighting.

Recently I met a mother who said that she had been told that because her son had autism that she should allow him to use the ipad whenever he wanted for as long as he wanted, because it was calming and a good way for him to zone out when the world became too stressful. Whilst I whole heartedly agree that this is a great reason to use an ipad, and it can be very helpful for when our kids need a distraction when things are stressful, I really couldn’t think of anything worse than completely unlimited use.

If I let my kids do this then they would literally spend all day every day attached to the device. They dont even have to come off it to eat or use the bathroom, I have even had requests from the to be able to watch films on it while they have a bath….Errm NO!

I have to say that the ipad has been a God send for us when Charlie cant cope with so much sensory input, a long noisy church service or a family meal in a restaurant, but to allow him to have unlimited use of it just seems like madness.

Often Charlie wakes up and literally the first words out of his mouth are “I haven’t had any screen time yet, can I have the ipad now?” I have heard lots of “it’s not fair” and “we are the only kids who cant have…” But they are slowly accepting the rules and things are changing some mornings now Charlie even wakes up and asks for toys.

When they get home from school they know that they can have only one hour on their choice of screen, and there are rules about having homework done first and no screens during meal times.

I was taking a call from my manager when they arrived home tonight and I was so proud of them when no one asked for a screen and this is how I found them when I finished the call. Their cousin was visiting and Lillie had even managed to offer to help her with her reading homework.

Honestly my heart nearly burst…

20140130-165452.jpg

“Bring Grandma” Family-Centered care

‘Family-Centered care’ it sounds so simple and so obvious.

But why it is so often completely ignored and misunderstood by the system?

Maybe it’s because the system that we are caught up in wants to treat everyone as an individual, I don’t know.

But we don’t exist alone, we exist as families, live and work and play, hurt and suffer, win and lose as families.

The family unit is like the body of Christ described in 1 corinthians 12:26 “If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” If one member of the family is struggling with a hidden disability then every member of the family is affected in some way, it is impossible not to be.

The system seems say this…

“we will help your child in school, you will help your child at home”

Then it says is this…

“We will tell you what to do and you can do it on your own.”

and this

“There is no money for therapy, you are your child’s best therapist”

How can this be the best way to help? How can this be right?

I spent much of the first 4 years of Charlie’s life asking for professional help, for someone to recognise Charlie’s difficulties as real, for someone to step in and help and to be the professional. I had never heard of Family-Centered care, but I did my best to try to explain that that was what we, as a family desperately needed.

Everywhere I turned I was told NO, I was told that my expectations were unrealistic and that what I wanted was simply not available. I don’t easily take “no” for an answer but by this time last year, I was so incredibly frustrated, my heart was broken and I was exhausted from trying to get blood out of a stone. I hoped that getting a diagnosis would change this but honestly, as I found out much to my disappointment, it changed nothing.

But something did change, and Thank God it did because truly I was reaching breaking point.

This time last year when we were planning to meet an OT trained in sensory integration for the first time, she told me to “Bring Grandma”.

She felt that if Grandma had some time during the week when she was caring for Charlie then she should be involved in his therapy too. Radical – I know but so simple and logical, and having grandma there at that first meeting has paid massive dividends. Why? because Family centered care is so important, because families are important and because anyone who is not part of the solution can quickly become part of the problem.

Charlie’s ASD presents as “mild” or “high functioning” because of this we were told again and again by teachers and professionals that his difficulties were our fault. We were sent on parenting courses, told to discipline more, be stricter, even to starve him into eating.

If I could single out one way in which Sensory Integration Therapy impacted my life, it is that every single therapist I have ever met has treated me as part of the solution, not as part of the problem. It is so refreshing to spend time with someone who gets that your child’s difficulties are not caused by you.

In August, I read this in Lucy Jane Miller’s book Sensational Kids p61

Parents who are living with sensational children need support. They want confirmation that their children’s problems are real and difficult to live with and are not the parent’s fault. They yearn to hear that they are doing a good job and that their efforts on behalf of their children are important. Parents of children with visible handicaps get a lot of support. Parents who have a child with the “hidden handicap” of SPD need support too, but are likely to be met with stares and demeaning comments when their children act differently than other children. 

In family centered care, parents and therapists become partners who assume different but essential roles. The parents identify priorities and are the experts on their child; the therapists measure progress toward the established goals and are experts in therapeutic technique. Using a family centered model, parents and therapists together use a specializes way of thinking about everyday life in order to achieve the goals that reflect the family’s culture and values………………….

……………Just keep in mind that family centered treatment is the standard of care for intervention and is widely available. There is no reason to settle for less

When I read this I cried. There it was in writing, exactly what I needed, and exactly what I had been trying to describe to everyone for years. It had a name, and there was no reason to settle for less.

We are blessed, because our family is so supportive, and because we have finally found the family centered care we were looking for.

There are so many families, still struggling to get the help that they need from professionals who tell them that they should settle for less than the best, or worse that their parenting is the cause of their child’s difficulties.

There are also families where grandparents don’t get it, where relatives simply don’t understand, but how can they when they are not treated as part of the solution? 

Grandma made Charlie a lovely weighted blanket, which he uses every night, to sleep and can hide under when he needs to feel calm.

Then this happened, and this was awesome…

Just before Christmas my sister took the kids out for a walk and came back with Charlie sobbing crying. She said he had fallen over but was fine afterwards, then about 3 minutes later he started screaming for no apparent reason.

He kept saying that his neck hurt but there was no mark or scratch or sting.

Then we found this tiny little tiny twig in his hood.

Looks like it fell off a tree and landed in his hood, touching his neck on the way past.

twig

Poor Charlie was so upset, I was sat holding him tight on the couch, trying to get in as much deep pressure as I could.

While my mum (Grandma) was looking for a heavy blanket to wrap him in I heard her say this to my sister…

“It must have brushed him lightly, and tickled or surprised him, The OT said don’t let things tickle him cos it will hurt him, if you are going to touch him do it firmly not very lightly because that won’t hurt him”

Knowledge is power and this is awesome, this is because Family-Centered care works, and no matter what you are told “there is no reason to settle for less”.