Parenting a child with SEND

Parenting a SEND Child - Mother is sat on beach watching as her young boy plays happily in the water.

It’s been a while since I’ve written a personal blog post. So much has happened over the last year that it’s been difficult to find the time. But also at times, it’s just been too overwhelming to put my feelings down on screen. Easier to share small chunks on socials as and when. Parenting a child with SEND tends to be all-consuming; it’s hard to keep up with the everyday.

This year has been tough as the transition to secondary school as you may know did not go well for Sam. The more research I have done, the more I’ve noticed this is quite common.

  • You are a small fish in a big pond again.
  • The expectation of workload increases exponentially.
  • You have to move from classroom to classroom.
  • Your hormones are all over the place.

Add into the mix that if a SEND child doesn’t go to their local mainstream school -they may go to a specialist school or a mainstream school out of catchment- then there are also lost friendships and new friends to make. Around 80% of children with SEND experience difficulties during the transition to secondary school. Moreover, studies and reports indicate there is a notable increase in the identification of SEND needs during the secondary school years.

For us, the struggle was that he had been so well supported by his learning support teacher at his primary school that we didn’t realise the severity of his needs. His transition seemed easy at first. He met a few new friends (he went to a mainstream out-of-catchment due to their SEND support). He didn’t have an issue moving from classroom to classroom (he’s always had an amazing sense of direction). Bar having to arrive when it was quiet so he could go in before all the kids arrived, it all seemed ‘okay’. But within a few weeks, the cracks began to form.

The school soon identified that his needs were more severe than first thought and new adjustments were put in place. Quickly the transition from waking to getting to school became a 2 hour nightmare. Which usually consisted of me sobbing in the hall whilst Sam screamed at me to leave him alone in no uncertain terms. Picking him up usually meant not talking in the car whilst he processed the day. Followed by what is known as the ‘coke bottle effect‘ as soon as we got home. Parenting a child with SEND is something you can’t fully understand unless you are one.

Fast forward to the end of his first term and the school had called an emergency EHCP review. They admitted they couldn’t meet his needs and he was in the midst of EBSA. We realised he needed specialist education. This is also when we got the news from CAMHS that he wouldn’t get his ADHD diagnosis as he didn’t present in a 30 min school observation. Also, school felt that his difficulties might be from a mild learning disability as his IQ was below average. It was a lot…

By now Sam wasn’t attending school at all pretty much. I would occasionally get him to go in, but the struggle for him became too much. He’d get there and either not be able to go in the building. Or if he did he’d stay in learning support and struggle to communicate or do anything. I suddenly realised that actually, all I was doing was adding to his trauma by insisting that he kept going. I’m embarrassed to admit that I even used the ‘it’s the law’ and ‘but mum could lose her job’ to persuade him.

I made the decision then to allow him to lead if he went to school or not. He pretty much didn’t but when he did it was better as it was his choice, not me pushing him. I gained his trust again as I was listening to him. We went to the GP to ask for an assessment for autism, a learning disability and possible genetic testing. Unfortunately, despite begging for, we could only be referred to paediatrics for his genetic testing. The rest had to go back to CAMHS and a possible 3-5 year wait again (he’ll have left school by then). The good news we got was that he was allocated his place at the local specialist school!

We were offered an extended transition to his new school and this seemed like the answer to our prayers. I am very aware of how ‘easy’ -it wasn’t- our journey and place was to get so quickly. But it didn’t go smoothly. The initial place was at the satellite provision at his current mainstream school. I already expressed my concerns as he would be expected to come to the place that he couldn’t face, but I didn’t want to seem ungrateful or defeatist. After two months of ‘trying’ and despite a couple of breakthroughs, it was clear that I had been right and the setting was never going to work for him due to high anxieties on his part.

We have now had his place confirmed at the main site and he has begun his transition there. It’s a slow process and I’m not getting myself excited yet. He goes straight in, he goes in without me and he stays for a good hour, but it’s only twice a week. This week will be a test as it’s an official ‘new starters’ day. I’m trying to balance keeping it in his head so he knows what to expect, without it seeming like a pressure. It will require him to go in earlier than normal, stay longer and meet new kids.

It feels like a lot.

Parenting a child with SEND is so rewarding, but also exhausting. It teaches you things about yourself as a parent, but can also reduce you to tears in seconds. It’s full of highs and lows; appointments; phone calls; form-filling; delayed milestones and lots of emotion. Your village is small (if it exists at all) but your online community is strong and will always have your back.

The paediatrician referred Sam for genetic testing. However, we still haven’t managed this due to anxiety when we tried to get his blood taken.

Between the GPs and CAMHS, his referral for his learning disability has been lost. So 4 months have been wasted there and I’m still chasing to ensure it has been sent/received.

All of the above has taken its toll. Sam isn’t quite the boy he used to be and I’m not the person I was a year ago. He’s encountered so much unfriendliness from kids at school and even kids in our village. I’m so thankful for our friends and family, and the online community who have just been such a support through all this.

We’re not out of the woods yet, far from it. I’m not naive enough now to think that the journey ahead will be easy from here on in. I just want Sam to be happy and learning. We’ll see how it goes and if it isn’t working then we’ll look at EOTAS. This time last year I didn’t even know what that was. It’s amazing what you can learn in a year when you have to!

If you managed to get this far, well done! I hope for some of you it will make you feel less alone. There are so many of us fighting the fight, and we shouldn’t have to.

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