We have another bit of the answer

One thing that has been said about our son’s needs, by several professionals, is that while he definitely is autistic and he definitely has learning disabilities, there are lots of other traits that our son has that aren’t typical of any of his diagnoses. One of these areas has been around food and eating.

Today we finally got a diagnosis that will help us and others support our boy more and also gives a better level of understanding. When he was younger, people would comment that he was a fussy or picky eater. They would encourage us to give him other foods and that he would eat them if he was hungry enough. But as he got a bit older, he started being able to say more about why he didn’t like things – it tickled his mouth, it hurt his eyes, it tasted different. He was rejecting food that had previously been okay when the recipes changed. He was also very definite about how food should be served and how it should look on a plate.

The nuances come down to raw carrots needing to be cut into batons, but cooked carrots need to be cut into discs! No food can be mixed on his plate, but gravy can go on EVERYTHING! Crisps in red packets are ok but other colour packaging, even if still ready salted, aren’t ok. Popcorn has to come in pink packaging! Cucumber is only ok if it’s not too wet inside. Only bananas from M&S and eaten at his grandparents are ok! The list goes on.

As a parent you feel like you are going mad when you are trying to explain to others these tiny nuances make a huge difference. When he started at school it took a few weeks to actually get him to eat, as he wouldn’t eat the hot food without gravy. Since changing school, he has refused to eat school dinners as he doesn’t know the kitchen staff and doesn’t trust them.

Today, after blood tests and discussions, our boy got a diagnosis of ARFID – Avoidant Restrictive Food Intake Disorder (https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/types/arfid/). Finally, we feel like our son’s struggles with food are being listened to. It doesn’t mean there is now a cure. There isn’t. But what it does mean is that there is a different understanding of our boy’s reactions to food. It means how we ask others to support him can come from a slightly different approach (I know a diagnosis shouldn’t make this kind of difference, but it does!) And it means we can set expectations for the future a bit better.

Right now it means we need to do a bit more research into supplements that we can hide somewhere in what he will eat without him knowing they are there – this is a really fine balance as we can’t risk a safe food becoming unsafe when he only eats about 10 foods. It means we can keep an eye on his weight and height, especially as he goes through puberty, and that the medical teams will be keeping an eye out for signs of any issues. It means we can relax a bit more now that we have an answer.

In his own time

One thing we’ve had a lot of pressure from others – friends, family, school – for a long time was the fact that our son still had a dummy and he was no longer an age that others felt it appropriate. But what many people failed to understand was that the dummy was far more than just a habit. It was a security item. It was his “safety blanket”. It was a sensory support tool. But it was also more than the dummy. It was also the wooden beads on the “dummy tie” to which his dummy was attached.

We had resisted pressure to just remove the dummy from our boy. We knew that this would just cause upset, meltdowns, and total dysregulation. We were confident that when he was ready, and in his time, he would get there. For us, one of the key things that we knew was affecting his use was changes to a lot going on in his life, and also his developmental age, still being way below his physical age.

But 2 weeks ago, he made that decision for himself! After hearing that his younger sister had been given a treat for giving hers up, he wanted to know what treat he would get if he gave up his dummy! We had a look and agreed on a Transformers toy that he really wanted. As I hit buy on my shopping cart, he removed the dummy from his dummy tie and put it in the bin! It was as simple as that to him at that point! He then asked me to attach his favourite chew toy to the dummy tie, and that was that. He went to bed fine. He returned to school after half term without it and with lots of praise from his class team.

A similar situation happened with coming out of wearing nappies. Recently, he decided he didn’t want to wear them anymore as they didn’t feel comfortable. We didn’t push it; we just knew he would get to a point where he felt safe enough to take the step when he was ready. And then one day, he made the choice. We have learnt from his life that our boy takes his steps in his own time. In the time that is totally right for him – even when it catches us by surprise!!!

My boy

I tend to write in this blog about my younger son, and his younger sister, but this time I want to write about my grown up son. The one who made me a mum. My boy!

Becoming a mum gave me a new purpose in life. I was a relatively young mum. Certainly, the first of my school and college friends to have a child. The day I became a mum was the day my life changed forever, and I wouldn’t have it any other way.

For several years, it was just my boy and me. He and I took on the world, making our life for us and getting it to work for us. We had adventures together. We had good days, and we had tougher days. We came as a package deal for friends, and when I met my now-husband. It wasn’t just about me; it was also about my boy.

Supporting and championing my boy was the best thing in my life, and still is now. I will always be the biggest cheerleader for any of my children. At Christmas, my boy and his girlfriend gave us the most precious gift; they told us that we were going to become grandparents. And instantly I knew that my boy was going to be a great dad. The news also stirred so many emotions in me as a mum. My boy wasn’t just my boy any more, but he was a dad of a baby that is coming into this world very soon.

I still remember the day my boy was born. I remember lying in my hospital bed just watching him. Just staring at the gorgeous boy that was totally dependent on me. I remember watching him grow, learning to walk, to talk. I remember patching up the grazed knees, the hospital visits for the bigger accidents, the parent’s evenings, the shows he’s performed in. I remember bursting with pride when he chose to go on a mission trip to Romania. I remember bursting in to tears every time I saw him on stage in a new production. All of those moments are etched on my heart as his mum.

But last week there was a moment that got me more than any other. My boy my big amazing boy, shared a post on a social media account. It was a beautiful scan photo of my grandson, and my boy had captioned it “My boy”. My boy has his own boy now. My boy has always been my boy and he always will be. It’s my term for him, not his brother (he’s got his own pet name), just him, and seeing him use the term just got me. It was in a good way, but in a way where knowing my boy is very much an adult with his own family. I am, and will forever be, so proud of my boy. My boy, always, my boy!

Being seen and supported

One of the hardest things I have found as a parent and advocate of a child who has any additional needs is feeling that you have been seen, heard and are being supported. This is in school, with friends, family, anywhere that we go or spend time. And it is hard because often it isn’t something that happens. You can get looks of pity, you get people looking away because they are embarrassed and don’t know what to do or say. You get people who will pointedly not ask questions because they want to be ok but also are naturally curious. You get the people that ask 100 questions, make the right noises, but do nothing.

And then sometimes you get the gems. The rays of light that not only see you, but they hear you – even when it’s the same thing for the 100th time, and they walk alongside you and try to understand, and then they offer help in a way that they know really helps.

Recently, we’ve experienced a couple of occasions of this. Of real rays of light that are or will make a huge difference, even when it might be such a small thing. A friend has offered to find time to spend more time together as families so that our boy starts seeing them as a safe space, so we have another option at times for him to go. To many, this would seem trivial and just a “playdate” but to us it’s knowing that there is an option. And for it to be offered without prompt is huge for us. It’s these moments that I well up over as I feel that we are being seen and heard.

In church a few weeks ago I had the vicar want to show me something…. a tuff tray – great! But then he showed me the second part – a box of lego. Both to be used together on a Sunday morning for those who need it to help them during the service. For us this was huge. Our boy comes to church, but generally spends the service sat in his buggy, sometimes napping, sometimes playing, and generally asking when are we going home. It takes a lot of my attention throughout the service and I struggle to engage with whats being said etc. Today we set up the space for the lego, and when the other children when out to Children’s Church our boy got out the lego, and he happily played for the whole service! He didn’t once ask to go in his buggy, and he didn’t need constant support and input from me, as he was in one of his happy zones, finding and making hinged things! It meant I could actually engage with the service! It was so wonderful to have been seen and people have had an idea which for us made a huge difference today! It really made our church feel like a place we all very much belong.

Thank you to those who see us and support us!

We will be his voice for as long as we can be…

Being an advocate for your child is part of any parenting journey, but throw in to the mix the UK system of SEND provision and the constant medical appointments, advocating for your child takes on a whole new level. And it is an exhausting level!

Since our son moved to supposedly the best school for him – as decided by the council (yes in the UK thats who make the decision) – we have had to advocate for him loudly and far more frequently than we would be expecting to. In the last 2 weeks it has jumped to a new level. 3 emails and a phone call in 10 days!

What’s so hard is some of the issues were avoidable. Some of it is linked to communication. And while I know people are human and fallible, as a parent of a child who is coming home so distressed every day after school, all you want is for things to go smoothly and things not to be missed. We want our boy to be as happy as he can be in school. We want him to feel safe and secure in the place he is at every weekday for 48 weeks of the year, and so we advocate. We have to be his voice.

What we have realised over the last few weeks, is that in the process of moving schools, all of the things our boy saw in his day as safety have been taken away, and not replaced with anything that replicates what these aids did for him throughout the day. So now, not only do we have to work hard to help our boy feel safe in school, we have to find new tools with which to do this. It isn’t simple and straight forward, but we need to do it. At the moment our boy has reverted to masking how he’s feeling in school constantly. He’s not got a way he feels safe to regulate in school currently, which is causing him to become more anxious as well as mask more. He’s then coming home upset and all the emotions he’s held up all day are coming pouring out.

It is exhausting – for us and him!

We have tried saying to our boy that he can say how he feels at school, but every time he has tried to, he gets over-ridden by the team and not listened to. It is so difficult as he then clams up more because he doesn’t believe that he will be heard when he says he doesn’t want to do something – not just because, but normally with good reasons, often that we have previously told school about.

So we are very tired. Tired of having to continually repeat ourselves. Tired because our anxious and stressed and unhappy boy is up from the early hours every day. Tired because we are emotionally giving so much every day both supporting our boy and following up with the school. We do it all willingly and from our hearts for our boy, and we would do it for all our children. But it doesn’t mean it’s not exhausting.

So again, friends are getting missed, messages aren’t replied to, life at times is passing us by, and sorry if this affects you. We both still have to go to work, we both have jobs that keep us busy and that we love, but we know it impacts everything.

It’s not straight forward

Last weekend I took our boy out to the cinema. For many families this is an activity that happens from a relatively young age. For our boy, this was his first visit, and it took a lot of discussion, planning, discussion, more planning and a lot of talking before it took place.

Imagine living in a world where every sense you have is heightened…..every noise sounds 10 x as loud, every light feels crazy bright, you can see smells! But within that you also really want to see what going to the cinema is like. You want to try what your friends seem to enjoy.

This is our boy’s world.

He wanted to go and see Zootropolis 2. He loves the first film so much, and really wanted to see the film without waiting for it to be streamed. But to go and see it we had to manage the potential sensory overwhelm. We do have a local cinema which does Autism friendly performances – lights don’t go fully down, volume is slightly turned down, they don’t mind if you move around etc. So this was the starting point. But still on top of that we had to then prepare him for what going to the cinema means. We had to take plenty of aids with us – his comfort items, his sensory aids, drink and food I knew he would consume. And then I had to plan the timing so that he had time to get used to a new space, to adapt to the smells and feel of the screen room.

Before we went we knew he had to have the energy to cope with all of the new sensory demands that the visit was going to put on him. The things above that many of us take for granted. We kept the surrounding time as calm and free for him as possible.

But you can only prepare so much. And although the screening is classed as “Autism Friendly” the foyer area was still playing loud music, and the lights in there are very bright. I managed to encourage our boy into the screen with a HUGE carrot full of popcorn – a favourite snack. And then he had to get used to the seats that move! That took a little while!

Yes, he loved the film! However, he did need to give a running commentary alongside the film – thankfully not the only person in the cinema talking loudly during the film. He kept telling me about Shakira – one of the “voices” in the film. (I’ve since discovered this intense knowledge of a singer whose first UK hit was over 20 years ago is linked to his school Christmas performance!) He would struggle to watch in film in a normal screening where the expectation is to sit still and quiet for most of it – he certainly did a lot of moving around and getting up and down from his seat too. He also came home feeling very tired.

His reflection afterwards – “Good film but not sure I want to do the cinema again unless it was for something really special.” So as we thought he would, he did still struggle with the sensory elements of going to the cinema. It made me very glad that I had stuck firm on a decision with school a few weeks ago where he had the opportunity to go to the cinema with them. We said no – partly because we had promised him that the first visit would be with us, and he had his heart set on Zootropolis being the film he saw, partly because he didn’t hugely like the film they were going to see which would make things even harder, but also because when he is soooo sensitive to noise, sound etc, experiencing a cinema for the first time, but with 90 other children was never going to be great for him. He needed to do it in an environment where he felt he had more control.

Our learning from this is that we really do know our boy and his needs the best. There have been some times in the last 3 months where we feel like we have really been pushed and questioned on some of our advocacy and decisions around our son. And this was one of them. People were responding to us as though his needs and responses were not what they would expect. So seeing our boy respond like we would expect was reaffirming to us in how we support him.

You can probably tell, due to the gap between posts, that life continues to be challenging and exhausting. We are still just getting through day to day. But in this post I wanted to share about how what to many is a relatively simple activity for us is so much more complex on lots of levels.

One tiny step! One big moment!

Today I got an email from our boy’s teacher with contents that I never thought I would be happy to hear, “He told me he didn’t want to do some work today!” For most parents this would probably make them think ‘Uh-oh’, but for us it made us smile. Him saying no to his teacher meant there was a moment today where he trusted his new teacher enough to express how he actually felt in a situation rather than masking and trying to “people please”.

Yesterday we had had a meeting with his teacher and come up with some plans to help our son feel happier and more settled in school. I had spent time explaining how with our boy, masking in school looks like him being the model student, doing everything that is asked of him without comment or complaint. However this is very draining for him, and also means he often isn’t actually taking in much, if any, of what he is being taught. So his teacher also appreciated that for our boy to be able to say that he didn’t want to do something is HUGE!

This was a big thing and we praised him for saying how he actually felt to a teacher.

We, and his teacher, know that him doing this today doesn’t mean that he will be able to do it tomorrow. It will depend on all the other demands being placed on him, on the sensory environment, on so many other factors, but today’s small step was a huge thing!

Could it have gone much worse?

The time lag since I last wrote shows how things have been. My energy levels were pretty low before the children broke up for the summer holidays. Then came the madness of school holidays and we finally got away and got some real R&R. Our boy slept so well every night all felt so rested. Spending time with friends and family was so needed.

But then we came back home and had to navigate returning to school.

For our daughter this was the best day ever! She skipped in to her class, one of the first through the door, greeting all her friends with smiles and hugs. For our boy, going back to school meant a lot of change:

• new school
• new way of getting to school
• new routines
• new people
• new peers
• new expectations.

We tried to do as much as we could to help him prepare, within the space in which he can manage to do that. We had spent hours writing notes for school and talking to the class team about what he needs. We spent time with him making it sound as positive as possible. We met his taxi driver before he had to start school. But it hasn’t gone smoothly….in fact, far from it. We now have a boy who is struggling to regulate himself. He has regressed in many areas with his behaviours at home and out and about. He doesn’t know how to express what he is feeling, and it is slowly coming out as he feels he can talk about it a bit more. This means across the weekend we are having constant moments of distress as he remembers something from the previous week which he has found hard.

Unfortunately, he has returned to masking full-time in school. He says he doesn’t know who he can say no to at school, who he can be himself with, and so he has to pretend to be happy when inside he is feeling sad, angry and anxious. He says he doesn’t want to make people angry or upset with him, and currently, his new school is not an environment where he feels safe to say what he feels. He is coming home exhausted and emotional. He has been waking very early each morning, and fighting sleep each night. Our normal routines aren’t working and we are just having to get through one day at a time.

As a result of the constant masking, our boy is coming home feeling exhausted and very dysregulated. We’ve had days when he has gone into shutdown for 2 hours when he gets home. We’ve been shouted at a lot. Other people have been screamed at if they say the wrong thing. We have had meltdowns lasting up to an hour where he is incolesolable.

And yes, we are communicating with the school. In fact we have had emails, and a daily communication book, but it took a phone call with the teacher to start unpicking some of the bigger issues. One thing that has been lost in the move, is the understanding of what the last couple of years of school have been like for our boy. He’s not spent all day in a classroom since Reception (he’s now in year 4). He’s never had to share a desk with another child, and his desk space became his safe space, where he knew he could just be. Suddenly he’s been put in a space where he is expected to stay in the classroom, or with his classmates, all day, and where he had no safe space and where he had to share desk space. And these are just one level of the struggles. So we are slowly unpicking and feeding back, and where the school can, they are making changes to help support.

For us, it has been exhausting and upsetting. I am walking round with tears sitting at the surface every day at the moment. I am waiting for the next revelation, I am expecting the next meltdown, I am constantly in fight mode.

For our daughter, it has been a time when her needs often come second to her brother’s. It is hard for her, too. She doesn’t know what reaction she will get either. It is a big change for her at home. We are very grateful that her class team know our boy and know that things at home have been tough.

I am so grateful for friends who have prayed, listened, supported or just sent a message saying that they are here for us. It’s not going to suddenly improve. We’ve not been updating people, as to be honest,, we are struggling ourselves, so writing about it is often the easiest way to share. We hope in time he will settle and start to unmask, but we know that that will be a long journey. In the meantime, we just take it as it comes.

It just all feels too much at the moment….anxiety sucks

Right now our focus each day is to get up, get dressed, get through the day and go to bed. That’s for our boy even more than for us as parents. As we near the end of term, facing a huge change, and with lots of reminders of the change happening, our boy is struggling on every level. We have done as much as we can to prepare him for the changes, but that doesn’t make it easier or take away the challenges that come with change for him.

The BIG change is changing school. Our son is finally moving to an MLD (moderate learning disability) school in September. It is much needed and long overdue. However, moving to the school means leaving the safety and security of the school he has been at for 4 years. This doesn’t mean that he loves his current school – because as i’ve shared before he doesn’t. He finds it hard to go a lot of the time because it isn’t the right environment. But it is the only school he has known. He knows where everything is. He knows who most of the staff are. He knows the routines of his days and his week there. He knows the very short route we walk to get there every day. He knows his friends. So while he might not enjoy being at school, it is a safe place. It is familiar. It is what he is used to.

Yes he has had a couple of visits to his new school. The first one, I was with him all the time. In fact, he wouldn’t let me out of his sight, and preferably within arms reach. He did enjoy some of the toys and instruments in the classroom, and was spinning for half an hour! But as we left he said he would only come back if mummy was with him. And he kept up this mantra any time anyone spoke to him about moving schools, “I’m only going with Mummy!” He has been emphatic about it.

Last week he returned for another visit, this time with his new classmates and with me not in the classroom. This was a hard visit for our boy. He wanted to be with us, he wanted his security and safety of being with us. The team were good, but we had to be quite firm and I had to walk away from him crying and trying to escape the room. It was awful for him and heart-breaking for me. Even though I also knew he was safe physically and I hoped he would be able to relax and enjoy his time. My first real interactions with some of the staff team were them consoling me as seeing my boy struggling so much was hurting me. And while yes, after a (longish) while, he did stop crying, he didn’t stop asking for me and threw himself at the door when he saw me at the end of the session. And even after that visit, he is still adamant that he is not starting at his new school without Mummy! So we will work with the school in September to find a way to get him in every day – even if it is in his pyjamas!

So yes, the big change is currently a change that is coming fuelled with unknowns and what ifs and fear because of it being so new and different. On top of this, our boy is struggling with knowing he is having to say a big goodbye to not only the building where he feels safe, but to his friends and the teachers that have provided him with the safety and reassurance he has needed since he started school at the age of 4. He is worried about making new friends. He is worried about his existing friends forgetting about him and not wanting to keep in touch. It is all playing on his mind constantly.

So we are just focusing on getting to the end of the week. We are focusing on getting up each morning, getting dressed and getting out the door, cos there isn’t much else we can do to get through each day.

Who am I?

Normally I write about our boy and how life is and how we are getting on, but this time I wanted to write a bit about me, about us. It’s Carer’s Week, so it seemed an appropriate time…

So who am I?

I’m a mum. I am a mum of 3. I am a mum of a grown up and a mum of 2 children. I am a wife of man who is my other whole! He is my biggest supporter on this journey. He helps with caring for our children. I’m a fundraiser for a small charity. I spend my work days making a small difference to the lives of others. I am a Christian, and my faith makes the toughest days easier.

I am the friend who can’t always reply to messages. I am the person who can only come round when my son is able to cope with me going out – and knowing when I will get back. I am the person who has to change plans at short notice because at that point in time my son can’t cope with going out. I am the person who doesn’t have time to proactively message much because finding the brain space for that is often too much. I’m the person who will always answer “I’m ok,” when asked how they are because to say more than that takes too much time and energy. I’m the friend that can miss the smile or the greeting from a friend in the street or the supermarket because my mind is so preoccupied with the next form that needs to be completed or the next appointment thats coming up.

I am the mum that constantly feels guilty that her other 2 children aren’t getting the time and energy from me that they need. I am the wife that struggles to stay awake in the evening due to the lack of sleep the nights before, due to the full on job of doing the administration related to our son.

I am also our son’s care giver. I am the person he sees as his primary care giver. I am his safe person. I am his co-regulation point. I am the constant when the rest of the world is changing around him. I am his voice, his advocate. I am his mum and his biggest cheerleader!