Picky? Puhleez!

I am reblogging this here as I could not have written it better,

Thank you Jessica

Sensory Speak

This will probably be my 2nd biggest blog post to date. It’s going to offend some, but hopefully educate others. This post is long overdue, but especially needed in the “picky eating” community. Tread with caution. This post will consist of my own words, but it’s the thoughts and overall experiences of my 7 year old daughter, B, and may other children like her who have challenges eating everyday foods. I will also be standing up for the “picky” eater parents who struggle with their own issues regarding this topic. Stepping into my big girl panties…

Picky eater. That word offends me beyond belief. I know it’s all over the internet. Many books, articles, and blogs have been written on the topic. Yet, picky eating doesn’t even begin to describe what my daughter and many other children like her deal with on a daily basis. It goes WAY beyond picky…

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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.

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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.

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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.

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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.

 

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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….

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Good News – We are getting a statement.

We received some really good news today from the SEN education department at the council. An e-mail confirming that Charlie will be getting a statement of special education needs, and that for now they will be naming his current school in the statement.

For anyone who is not in the UK, a statement of special educational needs is the legal document which sets out the help a child with additional needs must get in school and without which it is impossible to access special education.

We are so pleased to have gotten this far so quickly. I know lots of parents are being told that its impossible or unnecessary to get SEN statements or that their children’s needs are not severe enough, so I just want to write this to encourage you to keep fighting and keep trying because its not impossible.

I want to say a huge thank you to our advocate Stuart from S&A Education support who has been supporting us through this whole process, and without whom I don’t think we would have made so much progress.

I’m so happy that Charlie can stay in his current school, until a place becomes available in the specialist ASD school, he is so happy and settled in there and is really doing very well. The staff and the management are amazing and we are slowly getting to know some of the other parents which is great.

I was surprised how relieved I felt to get the news, I don’t think I realise how much the stress of not knowing what would happen next was affecting me.

I think I will sleep well tonight –

Sarah x

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Finally, I have a food thief

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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.

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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
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