Autism

post 18 support

| skwarepegrowndhole

This is a positive post – but I am aware that not everyone will have had our experience of post 18 support.

First of all, I need to clarify that our youngest has not had an EHCP. I did query this when he got his ASD diagnosis, but we decided not to pursue this for various reasons, although I was a little worried that our decision may become something we regret later.

I was warned when our youngest was in Year 13 and we were pushing for more support in exams that it would be harder for him to get support at university, and that he already had a lot of exam support. The amount of support, to be honest, is irrelevant. Our youngest is very clever and academically able, so the support is there to allow him to fulfil his potential.

The ‘extra’ that we were asking for was a room on his own. During GCSEs and centre assessed grades (CAG), he was in a room with other year 11s who had learning support. He was distracted by them writing, typing, sighing, having rest breaks, finishing before him, scribbling on the paper and tapping on the desk, to name a few. I had to email the then SENCo to ask for the distractions to be taken into account when the papers were marked. I have no idea if this happened, but A-levels were marked by the exam boards, and no dispensation was offered last year. They were back to pre-covid examinations, standards and marking.

When I found out that another learner had been offered a room on their own for their A-levels, I got a little stroppy. I emailed the SENCo several times, to no avail, and then ended up emailing the form tutor, who was the one who told me about universities. To be frank, university access arrangements meant nothing if we didn’t get the right support for these exams because if he didn’t get the grades, he wouldn’t be going anyway.

More emails were sent, now to the deputy head, and finally a reply from the SENCo, a phone call, and then the room on his own for most exams was agreed. Not quite what I had asked for. Fast forward to the penultimate exam, and the room on his own was disturbed by teens running past the room and disturbing him. Another phone call or two, lots of angry emails, and the final exam went ok.

Even before results day, his first choice of university got in touch and invited him to a SEND day in July. We went (parents invited too), and it was a fabulous, inclusive day. Results day came, and he got the grades he needed.

As I wrote last time (link here), we’ve been through a rollercoaster of emotions since September, but the first exam has been and gone – and it was so much smoother than school. He was told by the disability services that his reader would be in touch before the exam, and there would be time to meet up in person or online before the day if needed, but to email and just go through his needs. He didn’t want to meet up, but emailed what he wanted in the exam. He arrived in time, had the room on his own, extra time, coloured paper and a reader/prompt who did exactly as he asked.

We (and I say we as it’s him with us supporting all the way) are only at the end of the first semester, but the support has been outstanding. Lecturers have taken the time to answer questions and make adjustments where possible, getting the right exam support was so much easier than school, and the specialist ASD mentor and study skills mentor have both been amazing.

So far, post 18 support has been everything he wanted, and has been much easier to get than I was expecting – long may it continue!

What happens next….

| skwarepegrowndhole

As SEN parents, so much of our time is taken up with battles – battles with the education system, battles with school, battles with healthcare professionals, with policies, with how to juggle our time, and the biggest battle of all, the ‘should’ve, could’ve, would’ve’ that runs continually in our heads. So what happens when they leave formal education? What happens next?

I think any parent will tell you that parenting does not stop when children reach 16, 18 or 21. We are a parent for life. We worry, and I’m sure when it’s my turn to become a grandparent, I’ll then have children and grandchildren to worry about.

But I think it may be slightly different when you are a SEN parent.

In August, after A-level results were released, we did not have any children in formal education. We had done it, we had steered 2 children through their Early Years Foundation Stage (EYFS), all the key stages, GCSEs, vocational qualifications and A-levels. We were done – pass the champagne please, our days of battling are over.

HA HA HA HA HA HA HA!

Not a chance.

I should have known, really, as our eldest had issues with his first year on his first degree, and I had to navigate the complexities of him being over 18 but still needing support. Many angry emails and phone calls meant we eventually got problems resolved, but the stress of it all triggered depression and he ended up leaving uni at 20 – but went back in lockdown and graduated in 2022.

Our youngest had a completely different experience, but my role as a battling SEN mum has continued. I had learnt from the earlier battles and so had things in place that would allow me to talk to people if needed.

I’m not going into too much detail here, as he’s still in his first semester, and the university have been incredibly supportive, once we got to the root of the problem. But living in halls triggered all sorts of feelings, so after lots of discussion, he is living at home and commuting – and through witchcraft, stroppy emails and pleading, he’s been released from his halls contract. The course is not as academically stretching as he thought it would be – but he has been assured that it will get harder. Lectures with over 200 other learners after being used to A-level chemistry lessons with 4 other teens where there was lots of discussion, have taken a lot to get used to. There were times when the goal was to make it to the end of the day, then we extended to the end of the week, the month and now the first term. A month of exams, and then he’s done the first semester, with optional modules picked for the second one. After thinking he might not be able to stay until reading week, we’re now pretty sure he’ll make it to the end of year one – and probably beyond.

I don’t think that this is just due to protected characteristics. This is the cohort who sat their GCSEs in classrooms rather than exam halls. When they were supposed to be out socialising, they were wearing masks to go to the supermarket with their parents. When they were supposed to be rebellious, risk taking teens, they were careful not to take risks as they didn’t want to infect elderly relatives. They are the Covid cohort – and this has impacted many of them in so many different ways.

In our family, though, protected characteristics have made things even more difficult, but we’ve got through it. I reduced my hours at work so that I could do pick ups & drop offs (which I have really enjoyed – early morning conversations with my teen when stuck in traffic have been a great start to the day (no sarcasm, I thoroughly enjoy the journeys)), we’ve supported him seeing our GP and looking at ADHD diagnosis this year, we’ve emailed mentors when needed, and have encouraged him to ask for extra help when needed – and, despite the warnings from school – he has been given everything he needed, and more.

I am disappointed for him that he hasn’t had the start of uni that he envisaged, I am sad that living in wasn’t an option in the end, but I am so proud of him for getting to the end of this term, for taking control of his mental health, asking for and seeking help when he needed it, and it’s actually been lovely to still have him living at home. Our eldest moved into his own home & got married earlier in 2023, so it would have been a very empty nest if things had worked out how we all planned.

So, what happens next? It seems it’s more of the same, but with more autonomy for our teen to sort things out himself; in the crazy circus of education, I have gone from the lion tamer to safety net, and that’s exactly how it should be. I will always be here, for both of our children, for as long as I am able, to offer support, words of wisdom and to be their safety net – and I am always up for taming lions if the need arises!

where i am right now

| skwarepegrowndhole

It occurred to me over the weekend, that sometimes the pieces all suddenly begin to come together, and everything that you’ve been through – all the battles, the highs, the lows, the sleepless nights, the reading, the advocating, the tears and everything else – has led you all to where you are right now.

I have taught for the last 21 years – in fact it must be 21 years this month since I started teaching for just one morning a week alongside the last term of my undergrad degree. When I started, I had the vocational experience needed to teach at FE level, but I had no teaching skills. In all honesty, in that first term, I winged it. I tried to embody all of the good teachers I had ever had and none of the bad, and I think it worked! I loved it from my first lesson – and from that first lesson I have always tried to get my students, whatever age they may be, to like learning.

My first head of department was the most inspirational manager I have ever have (& if you’re reading this Mike, I mean that completely). He told us that it was an honour and a privilege to be able to teach teenagers. They let us into their lives, and is was up to us to live up to this and do the best we could. He believed, and still believes, that if you have the opportunity to teach teens, you should never be dull or uninspiring. If that’s you, then you’re in the wrong profession. He was right.

I knew very little about SEND when I started teaching. I knew that our eldest (at that time our only) was a bit of a handful and there was something. I didn’t know the terms neurotypical and neurodiverse then either, but if I had, I would have known that our boy was ND. My journey as a SEND parent was hand in hand with my journey to today, where I seem to specialise in ND or SEND students. Both my teacher and my parent hat complimented each other, and both helped me when wearing the other – if that makes sense.

From teaching the wide range of students that you get in vocational courses, I could identify things that maybe weren’t quite expected in my own children, and my journey with my own children has definitely helped me to become a better teacher. I have also seen parents and children let down by the system, I have seen people accept the first thing they were told when actually that was wrong, I have seen teens see their diagnosis as something bad, or something to fight against. I have cried on the way home from work because I can’t change the world for my students, and I have cried at home because I can’t change the world for my own children.

Today, I still advocate for my children, even though they are now young adults. I still see teaching teens as an incredible honour and privilege. I can’t change the world for my children or for my students, but I can give them everything I can to make the world a little bit easier. I can inspire them to learn, to believe in themselves, and to sparkle and shine.

Today I feel incredibly lucky to have my boys – they are two amazing individuals who make my world a better place. Today I feel lucky that I have a job I love, and teens who inspire me as much as I hope I inspire them.

You don’t have to be this tired…..

| skwarepegrowndhole

When we were going through one of our many stints at CAMHS, I had a conversation with our then case worker. I told him that I was just so tired, and that parenting additional needs was just so hard, and he replied that it is hard, and it is tiring and nothing can really change that, and that was the end of that conversation.  I get where he was coming from, as parenting generally is hard and tiring some of the time.  When you factor into that a child with additional needs, or a child who is going through a tough time, or a child (or parent) who is unwell, ‘some of the time’ becomes ‘a lot of the time’.

However, we have finally got to a point where both our children are doing OK.  We are still riding the roller-coaster, dancing in the rain or making lemonade at times, but, and not a moment too soon, things are a little better. 

I keep asking why, what has made us get to this point? And I think it is because they have both reached a point where their additional needs are an integral part of who they are, and they have the coping mechanisms in place, and the support they need to allow the good side of their barriers, conditions or whatever you want to call them, to come to the fore.  Yes, we have days (& weeks) where they still need help fighting their battles, but they also have days & weeks where their amazing uniqueness shines.

Reflecting on all of this has made me realise that I’d like to go back to the case worker and tell him that he was wrong. That it doesn’t always have to be tiring and exhausting and hard.  One of the reasons why we pushed for a diagnosis for a condition that we knew was there was because we needed people to make reasonable adjustments so that we could get to this point.  One of the reasons why I have worked part time (often juggling multiple jobs working from home and going out to work to get an almost full time wage) is so that I can fight battles and help put coping mechanisms in place.  One of the reasons why I decided to write a book is to help others get to this point sooner that we have!

Don’t get me wrong – over the last week I have had conversations with an anxious teen at almost midnight, offering to sleep on the sofa in the lounge and I have slept on the teen’s floor, and last week I was answering texts relating to OCD style actions and consequence worries from our older one, but it’s not all hard work, and there is lots more laughter.  I can pick the battles I will get involved with, and let them fight some on their own.  They are becoming people who are not limited by their conditions, but also are not afraid to ask for help or changes if that’s what needs to happen.

Let me run that two key points past you again – they are becoming people who are not limited by their conditions, and more and more we are seeing them and their amazing uniqueness shining.  We have waiting a long time for this – as have they – and it isn’t as tiring any more.  If you are going through battles, hard times, bad weeks/months/years, and you’re exhausted, please hold onto this: it can, and it should, get better.