We are never alone

Truly one of the most important things I have learnt this year is that we are not alone. God did not make us to be alone, in our lives or in our difficulties, but it is so easy to feel alone when you are struggling with something new and difficult, and the feeling and fear of being in it alone can seem so overwhelming that it’s possible to get to the point where you can’t even ask for help.

This is a long post but please stay with me I hope that you find it encouraging. If you are not a christian or you don’t believe in God in the same way as we do then thats OK you are still more than welcome to stay around, I hope that you will find something encouraging here too.

Deuteronomy 31:6
Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.”

69636_10151475420776648_508452234_n

I wanted to share a testimony with you, Its something that happened to me over the summer, which from the outside may seem like a fairly small coincidence but to me it spoke volumes about how much God cares for us and wants to build support systems around us, and about how he lays his plans down for us to meet our needs even before we know we have them.

If you have read the blog before you will already know that for a long time we had been praying for help and support for Charlie and understanding, insight and wisdom for us as parents. We felt that God has shown us through books and workshops that the best way to help him would be through sensory integration therapy. Our problem was that it is hard (to the point where it was beginning to feel impossible) to find therapists living or working in Liverpool who are trained in this area. In the spring we managed to find a wonderful therapist from Preston who came to Liverpool ran a full day training workshop and later did a full diagnostic assessment and report for us which diagnosed sensory processing disorder – sensory modulation dysfunction. The report cost us a fair bit of money but was worth every penny it as it gave us a more accurate insight into Charlie’s challenges, lots of practical suggestions as to how to help him overcome them and it helped to secure him a place in an assessment unit for school this September.

Over the summer a christian friend of a friend who is also an OT blessed us with a gift of 4 sessions of therapy. It’s a 300 mile round trip to see her, but again worth every mile as the advice she had given us earlier in the year and the insight she brings had already made such massive changes in our lives and had really helped Charlie to feel safe, calm and ready to learn and play. I am constantly impressed by the approaches the therapists use and the outcomes we have seen. I love how practically and logically they approach each challenge, and how they are able to think outside the box. I have written this so many times but I will say it again our son is literally like a new child since we have started using OT to help him; we have seen massive improvements in his behaviour, speech and language, social communication, overall wellbeing and readiness to learn. I am impressed by the way all the OT’s we have met treat our family as part of the team and not as part of the problem, and I have seen them bring hope and change into family situations where I genuinely believed that I would never see an improvement.

At our last session on the last friday of the summer it was really hard to hold back the tears, as much as tried I wanted to cry and I could feel my voice cracking as I said goodbye to my lovely new friend who had selflessly helped us more than she will ever know. The sessions had been great as had the knowledge that someone was with us in the struggle but the thought of going it alone for the rest of the year was really scary. As we left her house I felt like I was spinning out of control, and I could tangibly feel my desperation to have a support structure, someone who understood what we were trying to achieve and why. I could feel the darkness of feeling alone beginning to grip hold of me again.

But how we feel and what is reality are often not in line and the very next day God did something which totally blew my mind. In his perfect timing reminding me that he is in control and I am not ever going it alone.

It’s a long story, so please stay with me. Back in February we were in the zoo near where we go on holiday and Lilly made a friend of a young girl, for no reason other than thats what kids do, she had a brother the same age as Charlie, and so as 2 families with nothing but the kids in common we wandered around the zoo together. the day sticks in my mind because the kids were all looking really cute and were dressed in coordinated clothes.

It turned out Lilly only wanted to be friends because she was wearing a rainbow’s uniform, (Lilly wanted to go to rainbows but never got the chance). However they must have made an impression on her because from the time we came home Lilly went on and on and on nagging me about meeting up with them again, she wanted to invite this girl to her birthday party and for a sleep over, but the family lives miles away so it just wasn’t possible. Instead the 2 girls wrote each other pen friend letters, something which she has never done before.

By chance on the Saturday the day after our last therapy appointment with our friend we finally sorted out for the girls to meet up again. We went to a pancake house/ garden center/ aquarium near where we have our holidays. The place is free to get into (bonus!) and we never knew it existed before so my hubby was extra pleased because now it’s like his favourite place on earth. While the kids played we were standing talking about our summer.

I knew we would soon be eating together and so felt that I needed to explain a little about Charlie’s eating difficulties and how we have changed our expectations around mealtimes so that if she wanted to she could pre-warn her kids that Charlie wouldn’t be eating restaurant food and may need to use the i-pad or ear defenders during the meal. Not wanting to seem like a complete crank, who feeds one kid and not the other I explained how we had been coming to the area to see therapist once a week. I found myself once again banging on about the importance of sensory integration, explaining what the therapist does and why we are prepared to travel so far to see someone who can help us.

I was telling her about how Charlie has something called Sensory Processing Disorder and how we are trying to use SI to help him. As I spoke her eyes widened. Maybe she did think I was crazy. I mean here I was telling her that she was just about to have lunch with a family who drive 300 miles every week to see someone who plays with their child for an hour in the hope that it will eventually help him to eat. Her only response was to ask me if she has ever told me what she did for a job? I said no, I had no idea what she did for a job. Can you imagine? I nearly died of shock when she told me that everything I had just described was her job, she lectures in OT at the university and has taught for the sensory integration network oh, and for the icing on the cake, she was even going to the sensory integration conference I had booked into in September, the one I had thought I would be going to alone.

There really are hardly any people who do this job and as far as I know there are none in Liverpool at all, I couldn’t believe that God had brought 2 of them into our lives by sheer chance in the space of only 6 months.

After lunch at the garden center they invited us to a village fate near where they are staying which was really quaint and we had a fantastic time and then back to their cottage for spaghetti dinner- which also just happens to be everyone (except Charlie’s) favourite dinner. Charlie had a few meltdowns as the day was hard for him with so many new people and places, but it was so refreshing to be with someone who knows, really KNOWS what is going on and why he is behaving the way he does. Someone who doesn’t judge your parenting when your kid needs to hide under a blanket on the sofa while the rest of us eat dinner.

We had a really lovely day and all got on so well, it was so perfect it was almost weird! Most of the journey back to the caravan that night I was completely speechless, which is very unusual for me. I praise God for this amazing blessing and for once again teaching and reminding me that he never leaves us alone, and that he always knows the plans he has for us.

Since the summer we have continued to see God’s faithful provision for us  in the area of support. At the conference I met our new therapist who lives near enough to Liverpool for it to be practical for us to see her regularly. Once again another wonderful person who God has hand picked to bring us exactly the kind of help we need exactly when we need it. If you are reading this you know who you are, please know how much you are loved and appreciated, and that we are blessed to have you as part of our lives.

I have also found support in meeting with other parents of children with SEN many of whom we are able to see weekly at after school club. The kids are entertained learning circus skills and doing craft activities while the parents get together for some peer support and education over a much needed cup of coffee. There are many other people who are part of our lives who encourage and support us regularly. Other parents and teachers from school, church friends, extended family and work colleagues, people without whom our lives would be very empty.

Advertisements

New shoes

Did you know that your feet, hands, scalp, and mouth are amongst the most sensitive areas of your body? You have a higher concentration of nerve endings in these places than almost anywhere else, especially the soles of your feet. For people struggling with tactile defensiveness these are the places they will notice it the most. For years I have covered my hands and feet in moisturising cream to try to numb some of the sensation, you will always find me wearing comfortable shoes. Also I will do anything, and I mean anything to get out of washing the dishes if there are no rubber gloves available.

When Charlie was little he would fuss and complain about his shoes and socks, he refused to wear new shoes and so after a few failed shoe shopping trips we decided that would buy him second hand ones from eBay in the exact same colour and style that he was used to just in half size increments.

At home he is always barefoot indoors, even when it is cold. Outside he doesn’t enjoy walking over new surfaces and hates to be barefoot on soft sand or grass and so wants his shoes and socks back on to go outside, no matter how time consuming that might be. Many times he will avoid going outside at all or stay put on an acceptable surface, once I saw him tippie-toe walk on grass in desperation to get to the trampoline when his shoes were not available.

As soon as he was old enough and able to take his shoes and socks off by himself he would. In the house, in the car, in the shops the church the school anywhere and everywhere. The place we noticed this most was the car, every single car journey would involve me trying to locate and replace the missing shoes and socks, it drove me nuts. The worst was on rainy days, as I would be the one standing with my backside outside in the rain, head in the car trying to locate the missing items and he would be screaming and crying if a drop of rain got to him. Charlie hates wind and rain and the open car door and extra delay was causing him to get splashed!

In august last year we met our speech and language therapist to talk about food refusal she sent us away to “read all the information on the autistic society website

We read this

Hyper

At the time we knew nothing about sensory processing and so were surprised to find out that the shoes and socks problem was connected to anything else. On another website someone suggested turning socks inside out or buying seamless socks. Seamless socks are expensive so we went with the inside out thing first and it worked. We also adjusted our expectations, for example now we wait until the last minute to put his shoes and socks on before leaving the house. If the journey is fairly short and he can understand that he should keep them on we ask him to do so. Finally car journeys became a little easier.

This works great but if he has had a stressful or challenging day at school I will know as soon as we get in the car because he will immediately ask me if he can take them off. I generally agree, its better for everyone’s happiness if the boy is comfortable.

20131109-182424.jpg

Last week Lillie needed new school shoes, she loves shopping and she thinks that the idea of going to a big department store in town having your feet measured and then spending half an hour driving some poor shop assistant nuts choosing between a few, not very varied pairs of black school shoes is just wonderful. For her it is like a dream come true, she loves all the attention and especially the prancing up and down checking that they fit properly part. Oh and the bit where she can choose which friend to buy a similar style to, this time after much deliberation she chose to have the same style as her cousin.

1452314_10152001984921648_120130391_n 1394388_10152001984926648_1069874518_n

We gave Charlie the option to come with us, we explained that it would be a big shop and that the lady would need to check what size his feet were, that he would have to try the new shoes on and that they would feel different from his old shoes. We showed him pictures of what the process was as it has been such a long time since we have bothered trying that there would be no way he would remember. We also asked Lillie to go first so that he would know exactly what would happen.

He asked…”When she does that it would tickle?”

We said yes and he agreed to give it a go anyway, his motivation is inspirational. I am so proud of him,

20131109-182351.jpg

20131109-182401.jpg

20131109-182412.jpg

And so for the first time since he was a very young baby we managed a successful shoe shopping trip and both kids have new school shoes. On his first day back at school he kept them on for the whole day…until the journey home of course.

20131109-182441.jpg

one step forward, one step back

Honestly – sometimes its like one step forward, one step back!

This morning poor charlie caught the cat drinking milk from his bowl of cereal which he had left unattended for 2 minutes while he went to the bathroom.

He was devastated, and sobbed his little heart out.

If you are a praying person please pray that he will get past this quickly, we cannot afford to lose cheerios and milk from his diet.

20131109-082017.jpg

 

This is her evil genius pose, she can be quite cute when it suits her.

I think they have got the point

Ok so after last week’s meeting with Charlie’s class teacher and classroom assistant when I wrote this

 “Even though in the meeting I asked for consistent, clear, accurate written communication around food the next day when I collected Charlie another classroom assistant announced that he had eaten Jelly (Jello) in class. I was shocked, “Jelly? I asked, “did he really eat jelly?” she said yes, so I pushed her further, “what colour/flavour/consistency/brand did he eat? How was it served? Was it in a bowl with a spoon?” “Oh” she replied, “he didn’t eat Jelly, he ate jellies, I mean sweeties like haribos”. He has eaten Jellies before, now Jelly is a whole different sensory experience, it is wet and wobbly and unpredictable, had he eaten Jelly I would have been pleased, no more like ecstatic, instead I just went away annoyed about the poor levels of communication”.

On monday of this week I had a far more successful meeting with the head of the school. My new parent advocate was with me, which was great as it means that I have a witness should anybody change their mind as to what was agreed.

The head is really positive about sensory integration, she did one of the Shine SPD training days in the spring and has made SI a priority area for staff development this year. She paid for Shine to come into school and train the whole staff on their last inset day. She was great and was really open to listening to what I had to say. I was very impressed with her.

I said that I understood that our priorities were different, I prioritised nurture, feeding and sensory whilst she was prioritising education, but she said that she understood that without my priorities being in place that Charlie wouldn’t be ready to learn anyway so she wanted to work with us to get that right first.

She agreed to all of my suggestions for how we could work together better from now on.

One of the things we discussed was my request for clear accurate, written communication around anything to do with food or feeding. She agreed and said that she would pass onto the classroom staff how important this is to us.

This evening I received this note in Charlie’s link book

“At 11.30am Charlie said he was ‘starving’ and he ate a full bowl of ASDA smart price crispy rice cereal. He ate all of his packed lunch and ate an ASDA Smart Price rich tea biscuit instead of decorating it with fireworks icing!”

asda

I think that they have got the point!

 

Fireworks

20131105-214423.jpg

It’s bonfire night in the UK tonight, and I wanted to share some pictures of the kids enjoying themselves

20131105-214450.jpg

There was fun and family and food and fireworks and sparklers!

Muddy wellies and piggy-back rides

20131105-214518.jpg

We are so grateful for the people who have helped us and the things we have learnt throughout this year.

20131105-214538.jpg

Charlie coped really well, in fact he loved it. He only cried when his new friend went home.

I cannot put into words how much difference, occupational therapy and ear defenders have made to our lives

20131105-214614.jpg

I hope you enjoy the pictures…

The Emotional Roller Coaster

It seems like such a long time since I have written anything new.

Maybe it was only about a week ago, I don’t know, but if it was only a week it has been a tough one. Life feels a bit like an emotional roller coaster at the moment, one that I would quite like to get off, or at least slow down so that I can see the view from the top of the high bits for a while if that would be ok please??

Its not even that we have good days and bad days anymore, it can change hour by hour. Also its not just Charlie’s challenges which are causing the roller coaster, they kind of add to it but there are plenty of other reasons why everything is crazy at the moment.

I suppose the biggest thing is that the charity I work for is running extremely low on funds which means that my job and the jobs of everyone I work with are under threat of redundancy. Sometimes it feels like it is too much and I just want to give it all up but even that is hard because I love the work that we do and our clients constantly remind us just how vital it is.

On wednesday morning I was feeling particularly down about the job and a bit sorry for myself until I got to the office where I found 2 ladies and a baby sitting on the steps outside waiting to see one of our caseworkers, they had been sat there in the freezing cold since 6 o’clock in the morning, because they have nowhere else to go. Our center is unique and there are very few other places where our clients can go where they will be welcomed and helped, so they come and they sit and they wait.

Life is hard at the moment but we must never forget that there is always someone who is fighting a much more difficult battle than we are, if our center goes then so will their life line.

On Thursday I took another lady who is a volunteer, client and friend all rolled into one out with me to a school to talk to the teenagers there about the work we do. She spoke about how we as an organisation are her family and friends, her occupation, accommodation and support. She cried, I cried, the teacher cried, the teeneagers did their best not to show emotions – as teenagers do. But I am in no doubt that they were deeply affected by her words.

Personal testimony is such a powerful tool for reaching people.

Last week we had had to make the devastating decision to cut the very small grants of cash support which we give to our destitute and most needy clients through our food store, this is a horrendous decision to have to make, but the cupboard is literally bare. This week the situation changed significantly for the better when a partner organisation stepped in to fund supermarket gift cards for the same clients.

The atmosphere in the office is stressful, people are on edge to say the least but then the next high came when a colleague from another charity called to ask if she and some friends could organise a fundraiser for us.

At home there have been similar highs and lows, Charlie and Lillie have enrolled in a circus skills class, after school on a Monday night, the group is specifically aimed at kids with special needs and their siblings. While the kids have an absolute ball, playing and learning there is tea coffee, support and advice for the parents. Its a safe place and its great to learn from and share with other people who a walking similar paths to our own. Even though we share hard stuff I always leave the group feeling like my spirits have been lifted.

School has been tougher this week. It started out great, with Charlie’s teacher having done a day of training around sensory processing during the half term break so on Monday he was excited to tell me how well Charlie had “modulated well all day”. This is both good news that Charlie is doing well at his self regulation and also that his teacher now has a much better understanding of his needs. However on the flip side school sent home Charlie’s first IEP, now from what I understand this is a document which we are meant to draft together in partnership with the school, but for some reason they went ahead and did it without us. We were invited to a parents evening meeting to discuss it, but that was later cancelled. I sent a note into school explaining that when the meeting does eventually happen that one of the things I will be wanting to discuss is why there is no mention of feeding or eating in the IEP or anywhere else at all. Now I’m sure that the school can’t focus all their attention on helping us in this area it would have been nice for them to acknowledge it in some way as it is our number one priority and primary concern around development, and we had made this very clear to them before we accepted the place in the school.

Looks like my note didn’t go down too well with the school…

So on Tuesday after school I ended up spending an hour in the there on my own and unprepared trying my best to explain to Charlie’s teacher and classroom assistant how important it is to us that they have a plan for how they will help him with his eating. Sometimes I feel like I am speaking a foreign language, which nobody understands. I had to bite my tongue when the classroom assistant told me oh he sounds just like my fussy eater. NO this is not fussy eating, this is not a kid who refuses to eat green veg, this is a kid who lives on only Cheerios and milk or toast and butter!!! She told me that he eats custard creams (cookies) in school, and had once licked a piece of ham, I asked why they had never sent this information home, she had no answer, so I told her that if she really understood how important it is to me to know that kind of information that there is no way that she would have not told me.

Even though in the meeting I asked for consistent, clear, accurate written communication around food the next day when I collected Charlie another classroom assistant announced that he had eaten Jelly (Jello) in class. I was shocked, “Jelly? I asked, “did he really eat jelly?” she said yes, so I pushed her further, “what colour/flavour/consistency/brand did he eat? How was it served? Was it in a bowl with a spoon?” “Oh” she replied, “he didn’t eat Jelly, he ate jellies, I mean sweeties like haribos”. He has eaten Jellies before, now Jelly is a whole different sensory experience, it is wet and wobbly and unpredictable, had he eaten Jelly I would have been pleased, no more like ecstatic, instead I just went away annoyed about the poor levels of communication.

But then come the highs, meeting and making friends with another parent at the school, finding an advocate to support and represent me in the process of communicating with the school and looking towards the future of possibly having a statutory assessment and statement. Little delights like the fact that it turns out that he is the father of one of my all time heros, oh and by some miracle, because God is indeed good, the head of the school happened to call me to discuss the situation and arrange a meeting while he was in my house, Oh and there is more…he is available and willing to come to the meeting with me.

So there you go, up down, up down and repeat all week long. Hold on tight, next week is coming way too quickly

fairground

A day in the life…

 

So here is is for all of you who haven’t been able to see the original article. I did e-mail the editor and ask for permission to publish this over a week ago, and I have heard nothing so I am hoping that its ok to do this…

If you want to see the article in context you need to visit SI Network and pay the £15 membership fee, its not much and if you are interested in learning more about the therapy we use to help Charlie and how you could use it too I would urge you to join.

SInetwork

Charlie is an early riser and morning person, normally up and wide awake by 6am. Sometimes he has made it through the night in his own bed but mostly he has joined us in our bed at some point. Charlie loves to snuggle, he finds something calming in being under a heavy duvet squished between his parents. 
 “Where -illy?” Charlie asks looking for his beloved playmate and older sister Lillie, but she is still sleeping, and is not such a morning person so we leave her in bed for a little longer. 
 
 We start the day with Charlie’s tactile input. He knows the routine we have done for the last 9 months and happily joins in. “Which arm?” I ask and he willingly extends the right one and laughs. In the quiet of the mornings, he is happy and relaxed.
 
 Charlie loves breakfast. For the last 3 years, he has lived on a very limited diet of Cheerios and milk, toast and butter and certain brands of fruit juice, but today he wants cream crackers and butter. It’s a variation on a theme but still well within his comfort zone. He drinks his fruit juice through a straw, another small adaptation which has become part of our routine, and in my pre-coffee haze, I’m not really thinking about why it helps him, but I know it does. We sit together at the table, I drink my coffee and he munches away happily on the same kind of bland beige foods he has eaten for every meal of every day for the last 3 years. It doesn’t bother him as much as it bothers me, but I try my best not to let him know.

After breakfast if I am awake enough, we do some therapy exercises, commando crawling on our tummies, throwing and catching on our knees- or if it’s dry outside, we might bounce on the trampoline together and pretend to be power rangers. Sensory integration is fun but I’m sure my neighbours must wonder if I am crazy. Charlie wants to play on the Wii or watch TV but he knows that we have a rule that kids are not allowed screens until they are both dressed and fed, ready for school, so he goes to fetch his sister. 
 
 Charlie wears his uniform-it’s a soft polo shirt and we found some second hand well washed school trousers; he still needs some help to get it on but is beginning to attempt to dress independently. We leave his socks and shoes until the last minute before we leave the door, even with his socks on inside out he still finds it uncomfortable, so we try to minimise the time he has to wear them. 
 
 Lillie dresses independently and wants something different for breakfast again; she is as wildly adventurous with her eating as he is limited. We settle on yet another new kind of breakfast cereal. Lillie helps her dad make the lunches, in stark contrast to Charlie she loves variety of flavour and colour, spicy pepperoni is a special treat for her, and she adds some cherry tomatoes and cucumber slices to her box. Charlie’s box consists of only the foods he is comfortable with: more Cheerios, dry biscuits, more crackers, a bag of transformer snacks – currently the only crisp like snack he will tolerate, and a juice box with a straw. The same lunch every day. I’m glad that the school are understanding, and don’t insist on only “healthy” foods. When your child won’t eat in a typical way, it is easy to feel judged by others – even those who mean to be helpful. 
 
 We brush Lillie’s hair and tie it back in a ponytail. I look at Charlie’s hair and kind of wish I could fix it, but there is no chance. When I reach over to move a particularly unruly piece of hair that is sticking out. I am quickly reminded of the rules as he shouts in a voice which is suddenly anxious: “Noooo!! no touching my hair mummy, you hurting Charlie” I apologise and wonder if any of the other parents or teachers will notice that we never brush or wash his hair, or if they notice the slightly wonky hairstyle which is caused by my new found skill of night time haircuts while he sleeps.

sensornet2

While the kids get their screen time, I get my 10 minutes to run upstairs grab a quick wash and change into my work clothes. By the time I get down my husband has already repeated Charlie’s tactile routine, got the kids into their coats and shoes and we are ready to start loading them into the car. Charlie is ready with his coat hood up and a little umbrella in his hand just in case it suddenly starts raining on the 10 metre walk to the car. We do live in the north of England so this is a possibility! His ear defenders, spare clothes and therapy brush are packed into his school bag. We don’t hesitate or stop during the transition pausing or changing the plan now would cause Charlie to feel more distressed. Loading and unloading the car used to be a major battleground for our family, and would regularly result in one or more of us having a meltdown, and yes sometimes I would join in with the crying too.

I had no idea that wind, rain, socks, a passing truck, or a combination of all 4 could cause so much stress and chaos. I can hardly believe how much progress we have made in the last year. I clearly remember what life was like the days before I had ever heard the words sensory integration, back when I thought that an OT was someone who helped old people to walk or live at home again after a hip replacement. I remember the screaming and the fussing, and I appreciate every little victory we have in ways that typical families may never understand. 
 
 We are blessed that Charlie has a place in a school which understand his needs, the teachers are ready with toast and butter for the days when breakfast hasn’t been so successful. They incorporate lots of soft play, messy play and even swimming into his school day, and they remember that socks must always be on inside out. He has only been given only one year in this school while he is assessed and we had to fight to get it.  We are not sure where he will go next year or if at some point in the future he will be able to manage in the same school as his sister.

My work day is shortened to fit into school hours and I eat my lunch at my desk or in a meeting, so that I can leave earlier than my colleagues to be able to get the kids out of school. I am lucky that my manager is flexible and understanding, I love my job. I work with very needy people, during a time of crisis in their lives, but it is draining and by the time I get the kids out of their separate schools and we get home I am starting to feel it. Lillie chats happily about all her friends and their plans, she complains about doing her homework and the unfairness of spelling tests, as much as I agree with her I can’t let her know. I try to extract some information from Charlie, but apparently all he did all day was “run with Callum.” I dig his link book out of his bag and I am grateful that the teachers take the time to include some more meaningful information about his day in there, I read about what he has eaten, the activities he engaged with and how his pre- reading skills are developing. 
 
 Once home I chase the kids away from the many screens that they are so attracted to. We encourage our kids to do things in our house that other people might find a bit too permissive – jumping on the sofas, riding the scooter indoors, swinging in the loft, attempting to do a headstand or jumping between beds are all good activities, but they still love the screens and it’s hard to find the right balance. 
 
 For dinner my wonderful husband has made Spaghetti Bolognese he is gifted in the kitchen and we love our food, we cook from scratch and include lots of international flavours in our menu. Plain spaghetti along with plain white rice are both recent additions to Charlie’s short list of beige foods which he will eat, but tonight he is not interested in joining us, he asks for transformer snacks, we say no. So he wanders off to play with Lego.

We have learnt not to react; sometimes he will sit at the table; sometimes it is just too much for him, and I know he will probably eat later when it’s quieter and darker and after he has had some deep pressure or proprioceptive input. Our new vocabulary is almost as impressive as the change in our perception of the situation.

After dinner, things look pretty much like I imagine they would in any household with two primary school aged children. The tactile routine continues alongside homework and computers, play-doh and a squabble over which TV channel to watch or some toy that has suddenly become very popular again.

Bath time is Charlie’s favourite; the kids are still young enough to bathe together which is fun. He likes the bath deep and fairly cool. We have taught him to wear goggles and swim under the water face first, that way at least his hair gets wet. On the days that won’t work we let them splash the water as much as possible to get him used to it. Suddenly the deep bath water works it’s magic and he decides he wants to eat the spaghetti. Is it ok to eat spaghetti in the bath? I have no idea, maybe one day when I have time I will call one of my lovely OTs and ask them, but until then I’m just glad that something is going into his stomach. When the spaghetti is finished we let the kids play with shaving foam. Charlie likes the idea of shaving foam, but up to now only in the bath where his body is relaxed and he can wash it quickly off his hands when it becomes too much.

Finally, bedtime comes. We read a story, brush teeth (another small victory) and Charlie snuggles up in his sister’s bed. She has a memory foam mattress which she inherited from us, and Charlie brings his weighted blanket which my very talented mum made for Him. We allow the kids to watch a short Disney film on the old VHS player in their room. We say goodnight and give lots of hugs and kisses. 
 
 I don’t often make plans for the evening. It’s not that I can’t leave the kids with a sitter- they are really very well behaved for other people and we have some wonderful trustworthy friends but I am so very tired by the time that they are in bed. My bed looks so inviting by 8pm that I just give into temptation and get into it. I wonder about the spaghetti in the bath thing but I’m too tired to call anyone, so the question can wait for another day.