I had forgotten how much I can dread Mondays. Not because of my week – I love my job – but because of what it means for our boy and the impact that has on our family. Each Sunday evening bedtime is harder. He struggles as he knows that the morning means Monday. Each Monday morning, he will avoid the normal routines as he knows the end of the routine means the journey to school.
Each Monday (and, to be fair, some other weekdays), activities which our son can normally get through quite easily suddenly become the biggest challenge. Using the spoon theory, our boy uses most of his spoons on a Monday just getting himself out of bed. Getting through the next few steps in the morning routine, all of which have sensory impacts, is often a real struggle for him. And then he feels out of control because he can’t get through it all as he normally would.
So now I am dreading Mondays, which feels awful as a mum. I hide it, of course I do, but it does stop me from wanting to make plans or schedule things in my time on a Monday, as I might just need time to recharge my batteries or to support our boy in getting him into school. It’s a scenario that can improve slightly over the school year, as our boy gets more used to his class team and his Monday-to-Friday routine, but it can also get harder if anything changes at school without warning.
I live for the respite that weekends and school holidays bring. I then feel such mum guilt for wishing away the weeks and this time with my children. I struggle to get the right balance with my feelings, and I internalise a lot of them to protect my children, but it is a hard balance to get right.
So, following on from the start of the week (see this post), our boys’ anxiety levels are definitely still very high. The staff at his school are trying to help, but it feels like half of the problem (or more?) is that they don’t fully understand what the problem is. They have missed that the biggest issue for our boy is feeling safe and secure, and part of what he needs for this is to be with people – but grown-ups especially – that he feels he can trust.
Since Monday, our boy’s anxiety levels have soared, and his sleep has really been affected. Somehow he has managed to cope with starting the day at 1.30am and then keeps going till melatonin kicks in at about 8.30pm. We know when he is like this that he will struggle even more with school and he will become dysregulated much quicker.
Something they have decided to put in place for our boy is a daily diary that they will complete with him at the end of the day. Helping him think about how he has felt for the day, what has been positive, and what has been negative. The only problem with this, though, is that currently he doesn’t feel he can be honest about the bad things, partly because the space for bad things is smaller, so he sees that he can’t say it all, and partly because he doesn’t trust that he won’t get told off or told he shouldn’t feel that something is bad or negative.
So now we need to reassure him that he can say all the bad things and that he won’t get in trouble. We also need to keep communicating to the class team about how their ideas need to be tweaked and the support needs to be altered to meet our boy’s needs. He’s not trying to be difficult or awkward. He is just trying to navigate going back to school and a LOT of changes in the best way he can.
We know he often doesn’t respond in the “norms” that the school expect. We know he presents as a real mix of many needs, but this just means they need to listen more and adapt more to meet his needs. They can’t keep trying to fit him into a box where he just won’t go.
So tomorrow we write back with feedback on this evening, and tomorrow we try again.
Today I cried all those tears with my boy and more. We’ve had a very emotional weekend. Things he would previously have dealt with quite calmly have resulted in huge meltdowns. And then before bedtime last night, he had got himself to such a point of anxiousness that all he could do for over an hour was cry and tell me how much he hated school.
As a mum, seeing your child in any kind of pain is heartbreaking. Seeing your child in pain which you can’t just fix is even worse. You feel helpless when they want you to be able to fix it.
For our boy, it then all culminated today with trying to go to school. He just couldn’t do it. He had used all his spoons up just to get up and face the day. He is masking so much in school in the week of going back, he can barely function the rest of the time.
This morning he was struggling from the moment he got up. He was in tears at the thought of going into school. And when it was a different PA in his taxi, our boy just couldn’t manage to get down the stairs and into the taxi. He just couldn’t cope. So we sat and had a bit of a chat about what he was struggling with, and the list relating to school was long…. too many changes, not trusting his new class team, not feeling understood, feeling alone. The list went on.
After some time to regulate, our boy said he was okay with going to school, so I drove him in. As we got closer to the school, I could hear a change in his breathing, and he was starting to panic and get upset. By the time we had driven up the drive, he was close to tears. We walked towards school and all the emotions started to spill out again. He couldn’t face the thought of being left in a place he doesn’t feel safe and secure. He just wanted to be with us and in the house where he feels safe, and he can be himself.
I have to say, the school staff who came to support me in trying to get our boy to go to school were amazing. They sat on the floor with him and they listened. They visibly made a list that our boy could see, showing they were listening, and they have promised to act on some things. Some things they have already done, and some things will be done tomorrow, but they are going to help him and try to get it right for him. Exactly what that means and how it looks, we don’t know, but they are trying to find a way.
But today I sat and I cried with him, and I cried after I had left him, because I can feel my boy’s pain and I can’t fix it. All I can do is hold him and listen and support him. As a parent it is sometimes all you can do, and it doesn’t get any easier at any stage in parenting.
We’ve just returned from our 2-week holiday in France. 2 weeks at the same place that we have been going to for years. 2 weeks at the place where our boy looks forward to going each summer. 2 weeks where our daughter loves hanging out with friends and having a bit more freedom. 2 weeks that make a huge difference for us all.
One of the things that makes it such a special place for us is the people there – both those on the team on site and the friends who we see each year. People who know our story and have been such a support over the years. People who have walked similar paths but are ahead and can help us with their experiences. People who are just starting to walk these paths and value hearing about our journey. People who support us from afar, often without knowing the support that they give!
For us, the people who make this a holiday for us that is so special that we keep returning are the team on site – particularly the ones who run the kids’ groups each morning. They have been key in making the site we go to a safe place for all our children over the years. They give our children a safe place to learn more about God, ask questions, and explore their faith. They provide a space where friendships are formed. And they do this for hundreds of children each summer.
This year the team that was supporting our son were amazing. For the past 7 visits, he has just gone and been in his space. He told us nothing more than that he had had an ok time. This year it was a bit different – rather than just saying it was OK, our boy started telling us the bible stories that they had been told. He told us about the chats he had had about God and what it meant for him! For our boy, this is huge! We usually don’t get information from him like this about anything!
During the holiday, the group leaders asked us to consider moving our boy up to the next age group (he has continued to access the preschool space due to his developmental needs, etc.). We tried it. It didn’t go well this year. But the leaders in the preschool area were amazing with him. They gave him the hugs and praise he needed for trying out the new space. They let him have space to himself while he regulated himself again. And they just encouraged him. They also supported us in the way that we needed. They were incredible.
Next year we have all agreed that our boy needs to move into the space for the next age group up – physically, he is just getting too big. But what makes this place so special is that I could have a conversation before leaving, and we have already started thinking about it. In the new year, we have agreed I will get in touch, and we will try to come to a plan together, where our boy still feels safe to go to the group for a couple of hours each day, but where he feels he can regulate and feel safe. It will be a change that will take adjustment for him, but we can plan to get it right.
So why do we keep going back? Because it is a place where we are loved and accepted. It is a place where each of us can be ourselves. It is a place where our children are encouraged to be themselves. Above all, it is a place where we all feel safe and supported. It is a place where we relax and just be!
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.
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!!!
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!
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.
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.
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.
Parent of 3....two children and an adult! 