Anxiety

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!

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.

Some days…..

| skwarepegrowndhole

Most of the time parenting is about making it up as you go along, trusting your instincts and winging it. Some days it all goes wrong and you feel like the worst parent in the world. Sometimes, however, sometimes you get this parenting thing absolutely spot on, and it is the best feeling in the world.

Yesterday was one of those days.

Since going back to school, our youngest has been struggling. Revision, exams to decide GCSE options, results and then…well, a bit of a lull, and he’s been getting more and more down in the mornings, more withdrawn, and just going into that anxiety bubble. He was sent home from school last week with a stress headache, but he couldn’t tell me what had triggered it.

Last term, after his ASD diagnosis (on top of dyslexia and clinical anxieties) we decided that once a halt term, if life got too much, he could ‘take a day’ where he didn’t have to go to school, and it would be a reboot/recharge day. Yesterday morning after waking up and hiding under the covers, he came and asked for ‘a day’, and I said yes.

I did my usual morning routine (dog walking, sorting out ponies and hens) and when I got home, I told him to get up & get dressed as we were going out into nature for an hour. He did as I asked, and we drove to a local country park where we had a slow 2 hour walk round the lake where he jumped on every icy puddle (and may he NEVER get too old to crack ice on puddles!) and then popped into the cafe for a sausage roll and a coffee. We talked, we discussed life, the universe and anything else we could think of. He laughed and smiled more in that hour that hour than he has since Christmas. We both came home with glowing cheeks from the cold, and happy faces.

He was good for the rest of the day, was chatty, did his homework without any grumping at all, and then (icing on the cake for me) when I said ‘I love you’ at bedtime, as I always do, he replied ‘Love you too’, something he does very rarely because it’s just not his thing.

Today is another day, and I think I’m back to winging it, but yesterday was fabulous. I prioritised his mental health & well being, he had ‘a day’, and that day was just what we both needed.