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.

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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.

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.

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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…

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“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.

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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”.

What can you tell me about your child?

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This week we were invited to have a look at an ASD specialist school as part of the process of being assessed for a statement of special educational needs. Whilst we still hold out hope that Charlie will be able to attend the same school as his sister at some point in the future we have to consider that there is a possibility that Charlie may be better off learning in a specialist environment rather than in a mainstream school.

The school was beautiful, and much more peaceful than I was expecting, I was particularly impressed especially by the quality of the older pupils, and their confidence and ability to speak to us and articulate their thoughts, even when I put them on the spot, in front of their teachers asking them questions about what the best and worst things about their school were.

They have a very high staff to pupil ratio, and great facilities for the kids. Also as its virtually impossible to access any statutory early intervention or therapy outside of the school system, then we will have to give this place some serious consideration.

When we arrived we met the headmistress in her office.

As we sat down she asked us to tell her a little about Charlie…

A while back I was given a similar question by a specialist teacher, she asked me “what is Charlie good at?” Looking back, I feel so ashamed to say that the question had stumped me for a few seconds. As parents of special kids we get asked so many times to describe our kids in terms of their diagnosis, difficulties or the challenges that they are facing that these questions, although more emotional, somehow become easier to answer. As we walk this road we become so much more fluent in giving answers about what they can’t do rather than what they can do.

After gathering my thoughts I told her that Charlie was good at paying attention to detail, befriending children who are shy. He is good at building with lego, following rules, making people laugh and using a computer, he can swim like a fish and run for a long time. The list is goes on further, but I wonder how few times do I actually speak it out?

Given the situation on the day and the type of school we were visiting, It would have been easy at this point to start by detailing all of Charlie’s challenges, after all how else would we have got to this point? To this day, and to looking around this school? Maybe she wanted us to justify why we were there, maybe I needed to justify why we were there.

But at that moment I felt a check in my spirit, Charlie is far more than his diagnosis and far more than he challenges we have faced as a family over the last few years.

Suddenly in that moment it was so clear to me that to have started the day by describing him only in terms of his autism would have been selling him short.

So instead I started by telling her how he is cute and funny and bright and confident, how he is super friendly, I talked about the things that he loves, his Lego and ninjas and angry birds. How he is happy and well behaved in school and how is his making great progress with his learning.

Only after I had told her what a great kid he is, and made sure that she knew he would be an asset to her school, I added that he has a diagnosis of ASD and that his main challenges arise from Sensory Processing Disorder, and how he thrives when he is in an environment where is sensory needs are met.

As the morning went to there were plenty of opportunities to talk about autism and how it has affected our lives and how we hope that the school can meet his needs, and offer him the kind of support he is getting in his current placement.

Charlie wasn’t with us on the day, but I know in my heart that if he was and if he had heard me speak he would have felt proud to be himself. Knowing that his autism is a part of how God has created him and that we are proud of all of who he is.

A growing family of furbys

I am pleased to announce that we are now the proud parents of 9 Macdonald’s happy meal furbys, yes I know this is slightly more Furbys than is necessary it appears to be a very fast growing family, and this is the story of how they keep multiplying. 

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Last week Charlie came home from school with a note saying that for their Christmas outing they would be going to a soft play area in the morning, Mcdonald’s for lunch and then to another afternoon activity. I knew he would have a fantastic day. I am finally beginning to relax into the idea that the school he is in is meeting his needs really well. I sent in a note explaining how we normally handle trips to Mcdonalds and telling them that if they were going to handle things differently that they should tell him before getting there what their expectations of Charlie were going to be.

My mum collected Charlie from school that day and texted me to say that there was good news waiting for me. This was the note that came home in his link book.

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This my friends is no small thing, whilst some may disagree that what is in Mcdonald’s chicken nuggets is actually meat, this is the first meat of any kind Charlie has eaten for 4 years. The previous time was the one serving of cottage pie he ate when he was 7 months old. Also this is the first time in his life that he has ever eaten chips.

I was so happy I actually wanted to cry.

So we were left with the question of where to go from here, how to reenforce this progress, and whether or not he would be able to generalise eating with the school staff to eating with his family. We have been told that generalizing is hard for ASD kids, they will learn to do something in one place and then only be able to do it there. But we decided that 2 days later we would have a go anyway, so we returned to McDonald’s and tried to recreate the magic.

I wasn’t holding out much hope that it would work, but I did explain to him that we would expect him to wait for his ice cream until after the Lillie and her cousin had eaten their nuggets.

We bought him his own Happy Meal as we have done a million times before, placed it in front of him and got on with eating our food. He did a great job of ignoring the food, playing with his furby and asking at least 100 times when he would get his ice cream, each time I told him that as soon as the girls finished their food then they would all have ice cream.

I asked him if he would like to try a chip, he said no, I asked if he would like to try a chicken nugget, I got the same answer.

I was kind of disappointed but not at all surprised that he wasn’t able to eat with us. I was right at the point of giving up the game when I looked up at the door and who was walking in but Charlie’s teacher. Not just any teacher but the very one who has been tasked by the Head of the school with working one to one with Charlie on developing his eating.

She looked at him and said casually “Hi, Charlie, are you going to eat your chips now?”

Like magic, just like that, he picked up his chips and started eating them. Like an angel, she and her family sat on the next table to us and she gently encouraged him to eat and he did, he had fun and we even had races to see who could eat their Chicken nugget the fastest.

It was hard to believe my eyes, having not seen him eating these things ever, hard to pitch my praise for him at the right level, and even kind of hard not to want to kiss his teacher. (I didn’t do it, I promise!)

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Today we decided to try again, I figure we need to get to a point where he will eat the food consistently in McDonald’s before we attempt to generalise it to home or another location, to do this we need to give him lots of opportunities to try, hence the growing family of furbys.

We all ordered Chicken Nuggets Happy Meals, even the adults.

Charlie tried the chips but they were too hot and he got upset, so we decided that he could have his ice cream while he waited for them to cool down.

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After the ice cream he was a little reluctant to try the chips so we turned it into a game and played races to see who could eat them the fastest, he loved this idea.

We were drawing quite a lot of attention to ourselves with the cheering, the Staff found it very amusing and when we explained the situation even came along to support him.

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After the chips were eaten and he was struggling to eat a nugget, Lillie was beginning to struggle with the length of time it was taking. Then once again the most wonderful thing happened, and another angel came to our rescue.

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In an effort to encourage Lillie to wait and Charlie to eat the restaurant staff brought out the face paints.

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For a good 20 minutes, while lillie had her face painted Charlie tried so hard to eat his nugget…

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and to reward him for his efforts he had his face painted for free, and Mummy had a Mocha with cream on top!

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And we all brought a Furby home to add to the growing collection.

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