Do you think I should go to school?

This week is School Avoidance Week, and the topic couldn’t be more relevant to us right now. Do you think I should go to school is asked a lot in our house from both me to my husband, and from my son to me. Historically, school avoidance, often labeled as “school refusal,” has been misunderstood as a child choosing not to go to school. But the narrative is shifting. Instead of saying children “won’t” go to school, it’s recognizing that, for many, they “can’t.” There are many reasons behind this, and I want to share our experience.

When my son started school, I was worried. He had so many quirks, and I thought he’d hate it. But when he began with half-days, he seemed to love it, running in each day, and I felt so relieved. When he transitioned to full-time, my anxiety returned, especially around his diet and school dinners. Those first weeks went okay, but as time went on, mornings became increasingly difficult. My son started having intense “rages”—something we had previously dismissed as phases of “terrible twos,” then “threes,” and now “fours.” The rages before and after school were unbearable.

I managed to battle on through until the January of his first year at school and then I asked to speak to the teacher. I described how hard I was finding it getting my son to school, he would go ballistic on a morning. To say the teacher was shocked was an understatement but she passed me over to the SENCO who I had a lengthy conversation with. I described how my son was and gave her lots of information about my son’s diet, the issues we had with clothes, how literal he was, the “rages” etc and she asked if I had ever considered if he was neurodivergent. When she asked, I suddenly realised that yes, he was, and I told her so. She said she would monitor him for two weeks. I can remember her saying…

“Don’t worry we know what we are doing, and we know what to look for.”

I was naive then, thinking this was the turning point. Those two weeks were the longest of my life, waiting for that call. When it came, I was completely unprepared for what she said: “He’s fine.” She ended the call by saying…

“If you feel overwhelmed again, don’t hesitate to get in touch.”

I didn’t realise it at the time but that was my very first experience of being gaslit in this situation. It was me that was the problem; I was just feeling “overwhelmed”.  They were the professionals right. They knew better than me. And so, I left it, and I battled and battled with my son every morning and a lot of times after school. He missed a couple of days of school when he had woken up and gone ballistic and I took the executive decision not to send him. At this stage I was justifying it to myself by saying he was tired. If he was neurodivergent then school would see that right. Right?!?!

By Year 1, things worsened. Every morning was a fight, and we both cried on the way to school. His protests were unlike anything I had seen. He started missing days here and there, and I’d lie to the school, saying he had a temperature, but by the February, I knew enough was enough. I went back to the school, desperate for help. “He’s fine” they kept saying but I knew he wasn’t. We wouldn’t be having this every morning if he was fine. Again, I was passed over to the SENCO and she decided this was probably anxiety so it was decided that I would attend a Parent Led CBT course for anxiety to help my son with his “anxiety”. During this time period my son missed quite a few days in quick succession and so I spoke with school again. The SENCO said he could start counselling in school. Between the school teacher and the SENCO the repeated dismissals became unbearable……

“He’s fine.”
“This is just for you.”
“He’s just trying to play you.”

By this point though I had educated myself. I knew my son was neurodivergent and I knew he was masking at school. Masking is very common among neurodivergents. They mask themselves in settings they don’t feel comfortable in – sounds perfect right. We all do it, we all pretend in certain settings but for neurodivergents this is not good. While masking can help someone navigate social situations or environments like school or work, it can be incredibly exhausting and lead to stress, burnout, and a loss of identity. Many children who are seen as “fine” at school may actually be masking, making it difficult for teachers or others to recognize their struggles. And it amazed me that school didn’t seem aware of this, and if they were they were completely disregarding it.

So I started a new battle, not with my son this time but with school. I needed my son referring to the neurodevelopmental team. I went to the GP and they said this is best to come from school. By this point I think school were sick of me, they didn’t see what I saw, and I think they just wanted me to go away, I actually felt like the SENCO was just humouring me at this point but they said they would refer my son to CAMHS. We wrote the referral together and this was sent in in May.

Over the summer holidays, I felt a renewed sense of hope. I understood my son better, had tools from an OT assessment, and thought this new school year would be different. But as September began, my hope quickly faded. The mornings weren’t good at all. And then my son missed his first day of school, and I had to push for a meeting. I had emailed the SENCO on the 30^th August to request a meeting. After 7 days I still hadn’t had a response to this email so I went into the school office and asked the receptionist to chase it up, she said she would. After another 7 days passed and still no response, I was very angry. Thankfully our early help worker arranged the meeting, and this took place on 23^rd September, ironically on the first day of School Avoidance Awareness Week.

I started the meeting by saying the issues remain, nothing had changed about getting my son to school. These issues had been here since starting school and I believed my son to be neurodivergent and he was masking at school, and I was his safe person, my house was his safe space and that is why it was only for me that he was like that. In order to help him we all needed to accept this and put a plan in place to meet my son’s sensory needs which would help him want to come to school. Because my son loves learning, he really really wants to go to school but the reality is he can’t. He just can’t. And the reason behind that is his sensory needs aren’t being met. It will cause him sensory overload to go to school. But my arguments fell on deaf ears….

“He is fine.”
“It’s really difficult to work with these “supposed” behaviours when we don’t see it.”
“It is very unlikely that a boy could mask for that long. Girls could, but boys, no.”
“I have to foot the bill for that.”

And then the biggie. The SENCO who had said all of the above then said…

“And there just wasn’t enough evidence from school for the CAMHS referral, the referral has been declined, so it’s up to you if we resubmit but we have to wait 6 months.”

This was news to me. Big news. At no point had the SENCO let me know this. I felt sick but I shook that off and directed everyone in the meeting to the OT report. This was evidence. This set out all the things my son was struggling with and needed a bit of extra support with at school. They could not refute this. Right?!?!

SENCO: “We can’t really take this into account as it’s a private report. You need an NHS report.”
ME: “Ok how do you get referred to NHS OTs.”
SENCO: “We can do this, but we can’t refer your son as we don’t see the issues you see plus there is an 18 month waiting list.”

What?!?!? Am I actually hearing this. There is a little boy who is so scared to come to school he beats up his own mam. There is a little boy who loves learning but can’t cope with the environment of school. There is a little boy who needs help and support. And I as his mum, as the person who knows him better than anyone in the world have been completely dismissed. Completely dismissed. And not only that but a professional report has also been completely dismissed. I completely zoned out from the rest of the meeting because I knew it was pointless. And for the rest of the meeting, I sat and looked at the clock on the wall and I concentrated on the second hand going round and I watched it go round and round and round.

Round and round and round and round. Thank god for that clock.

When it finally ended, I was shaking, and I ran all the way to my car and when I got there the sobs came out. I had never ever been made to feel like that.

EVER.

I cried and I cried, and I cried. I cried all the way home. I cried all afternoon, and I cried all night. I was destroyed. Absolutely destroyed. The one thing that had kept me going was the belief that my son was in the system of getting a diagnosis, but the SENCO had clearly said that the CAMHS referral had been declined. We were right back at the beginning.

The next day I wrote our early help worker an email. I set out everything I saw wrong with that meeting. I set out how alone I felt. I set out how awful this situation was. I set out how my son was being failed by all of us.  She immediately rang me – she told me not to worry she was going to find out what was going on with the CAMHS referral. She was also absolutely shocked by school’s attitude. Over the course of the next few days we got a plan together……we found out the SENCO had misled us, either on purpose or by mistake, the CAMHS referral had not been declined at all, we were on the waiting list. CAMHS rightly said that no referral would ever be declined they would always see the child first so we are completely unclear why the SENCO said this. And I do have it in mind to make a complaint about this but I need to prioritise my battles.

I contacted another service called SENDIASS (SEN Information and Advice Support Service). This was a service that knew your legal rights and they would also come to school meetings and advocate on your behalf and after speaking to them they said they would do this for me. They would also educate the school in the process around masking behaviours. They told me that absolutely my son sounded neurodivergent and absolutely he could mask himself in different settings. They said this was an ongoing battle with all schools.

On the Wednesday of School Avoidance Awareness Week my son didn’t go to school. He really really wanted to go to school. He kept asking me….

“Do you think I should go to school?”

Of course I think he should go to school. It’s a logistical nightmare sorting out everything when he stays off. Because it’s not like he stays off and then he’s fine for the rest of day. He’s very tense until I (or someone) does activities with him that I know regulate him. And I knew he really really wanted to go but he couldn’t. On this morning we got as far as parking outside school and he kept looking at the school and then having a mini panic attack. And I realised that all the strategies I have are not enough to counteract the overload that school brings to my son. And what sort of parent would that make me to send him to a place that made him feel like that. Would you send your child into the Lion’s Den every day. So, I took him home. And this was a logistical nightmare I had back-to-back meetings on this day and I was aware that I had missed a lot of work recently which is not ideal at all. My husband helped out massively by taking my son to play football with a friend that my son really really likes, who he calls Mr Bean. It may seem like a treat taking him to play football but it isn’t. Running about and off loading all the energy and stress from his body helps him. My mam then had him for the rest of the day and she made sure he did lots of activities he likes and it was only by afternoon he was able to sit and relax on his ipad. And I managed to do all my meetings, I did cry on the first meeting when the other person asked me how I was and it all came out but other than that I kept it together for the rest of the day…..just.

And as I lay in bed on this Wednesday, the third day of School Avoidance Awareness Week writing this blog I realise how complex the reasons behind school avoidance are. I realise how complex our journey is – the misunderstandings, the battles, and the painful dismissals. But despite all of that, one thing has become crystal clear: my son is not “fine.” He is struggling, and he deserves better.

For my son school avoidance is about surviving an environment that overwhelms him in ways that I couldn’t fully see at first. But now, I understand. As his mother, I’ll keep fighting for him—not just for recognition, but for the support he truly needs.

The irony isn’t lost on me that while my son asks, “Do you think I should go to school?” I’m asking my husband the same question—“Do you think I should go to school and speak to them again?” But this is where we are right now, and as much as we both hesitate, we keep showing up.

The goal? To get to the day where my son actually wants to go to school—and I don’t have to. Until then, we’ll keep fighting, because if he has the courage to face it, then so do I.