This post has been on the edge of my fingertips for a while now but I couldn’t quite manage to write it. I think I am ready now to share some of the things that have happened over the last few months. It won’t change anything but hopefully, as blogging can be therapeutic, it might help me to make sense of things.
Our family have been coping with a new normal. I’m not sure that I wanted to accept it as a normal. I wanted to think of it as a blip, a phase, something that would eventually come to an end. But it hasn’t come to an end. I’m not really sure where it started, six years ago maybe, and it increased over time, left unchecked like a dripping tap.
Life with my youngest son has always been a challenge. You know when people smile and shake their heads as they describe one of the children as ‘the one’. Well, he was my ‘one’. He was a difficult baby. A charming toddler. Those years were so amazing, looking back. Then around three or four, he became the ‘one’. The one who displayed the most challenging behaviour. The one who would not always do things the expected way. The one who knew exactly how to push my buttons. But he was the one with the longest, loveliest cuddles. The one with the kindest heart and warmest smile. The one with the most incredible mind, the most amazing memory.
Primary school was a rollercoaster ride. The early years were a mixture of challenging behaviour and an overwhelming thirst for knowledge. He was picked out in Reception as being gifted and talented and if a topic grabbed him, he would talk about it and want to learn more about it, with the most incredible memory for even the finest details. At home, he would create projects and even now I look back on his creations with a mixture of pride and amazement at his determination at such a young age to want to learn so much. There were times, however, when I would tear my hair out at his determination not to do some things and the way he would challenge adults even at a young age.
By the time he arrived in his final year, he was doing well. It was a small school and they all knew him really well. There were times when he would not be convinced to do things and other things that he did and surprised us all. He moaned about school but never questioned going. He had friends. He seemed happy.
Yet in the back of my mind, I had a nagging concern about the change to middle school. When there was some unrest at home due to a job loss, he became very volatile. There were some aggressive outbursts which shocked us all. Tantrums and mood swings weren’t uncommon with him but this was a whole new level. It was uncertainty, change that caused it and at the time, I wanted to take steps to get some medical support as once again, I was worried about the impending school change. Our usually supportive families were in uproar. Accused of ruining his life, forcing him to be labelled we cancelled the appointment doubting our own judgement and hoping that as things had started to settle again, maybe everything would be alright. Maybe it was simply another phase.
As the end of the summer term approached, so the mood swings and the temper returned. The summer holidays could be described as a skating on thin ice, you never quite knew what would happen next. Our family life was starting to change, very much determined by the actions and mood of our youngest son.
School started and the effect was immediate. He behaved immaculately in school and to anyone outside of these four walls, he appeared to have settled in really well. Inside these four walls, it was a very different story. Aggression turned to violence. We would regularly be sworn at, hit, kicked even spat at. It was as though someone has taken away my little boy and replaced him with an angry teenager. He was just ten.
Life was very difficult for those first few months. It had a massive impact on us all. We were feeling helpless, desperate and his brother and sister were shell-shocked.
A pattern started to form. Stress and anxiety were the main cause. He couldn’t cope if homework hadn’t been done. If he left his PE kit in school, he wouldn’t sleep that night, worried that it was lost. His bag and PE kit would be checked and checked again, often a number of times and I could see that he was totally crippled by stress and anxiety but however I tried to help and reassure him, it made no difference.
Mornings and bedtimes were the worst. He would struggle to settle, worrying about the following day and then tired the following morning, he didn’t want to get up and go to school. Many mornings, I would be in tears by the time we left the house from the sheer effort of getting him into his uniform and out of the house. It was beyond exhausting. Yet I knew and I still know that I have to get him out every morning because that one morning when I give in, might mean that I never get him into school again.
We started to read articles and books on a range of topics and it was strangely reassuring to see that so many other parents had been and were going through similar situations, some with even younger children. Many diagnoses could fit, some I had always considered a possibility and some new ones. We found some strategies that helped. We agreed that whatever anyone felt about labelling and diagnosis, we needed some help.
The help is still a long way off. The process is a long and winding road. There are no quick fixes. We are reading and reading and trying to find coping mechanisms and a way to make the situation easier for us all.
So our new normal is having two youngest sons. The one we recognise from old, funny loveable, charming and good company. Sadly, we don’t see enough of him but it is reassuring to see him every now and then. The other is one who needs a lot of space and time alone, who becomes aggressive and volatile with very little warning or reason.
The aggressive behaviour is less frequent but generally his willingness to do anything as a family is pretty much non-existent. On days when there is no school, he doesn’t want to leave the house and it is a struggle to get him out of his pyjamas. Out of school clubs have been abandoned, he never really enjoyed them anyway and now it is all too much for him.
We were advised that wherever possible, if we know that something is going to cause a ‘meltdown’, then we should avoid it and as a result, he has become extremely attached to his screens. They seem to be his comfort zone, his happy place, the place where he feels safe I suppose.
We are getting better at managing him but some days it is so hard to watch a child of ten years old who will not get out from under a duvet, won’t dress himself or leave the house and last week, when we went away to Devon for a few days, he stayed with his grandparents because he didn’t want to come on holiday with us. It is heartbreaking.
I find myself looking at other families who are out and about, looking relaxed and happy and feeling jealous. Why can’t we have that? We have it as a family of four, but there is something, someone missing. Photos which once made me happy, make me feel a sense of loss because there is a gap where my beautiful son used to be.
I know that things could be much worse and that there are parents who deal with much worse in their lives but our new normal is a challenge none the less and it is by far the toughest thing that I have had to deal with as a parent so far.
Our new normal is managing. Trying to explain to his siblings in words that we don’t really have, why their brother is behaving so strangely and why he has to be treated differently to them. Our new normal is trying to explain to his teachers at school that the boy they see in school every day who looks happy and relaxed, is an absolute nervous wreck who has a panic attack most mornings in the car because he can’t find the rugby socks that he knows are there because he checked ten minutes before.Our new normal is trying to understand that our son is probably wired differently and so he sees things and reacts to things in a totally different way to our perception of normal.
Our new normal is coping. Trying to remember that our lovely little boy is still there under all of this anger and anxiety and that somehow we have to get him to a point where he can be an independently functioning adult.
Sending you love. I recognise so many of those things in my own boy – fortunately he is not aggressive but the anxiety and the worry about homework and p.e kits is so familiar, as is avoiding family events and feeling safe in screens. We did go down the diagnosis route when referred by his pre-school, but at that point the peadeatrician wasn’t willing to put a label on him, feeling he could just be very bright, and we haven’t gone back – tho we very nearly did – when he transferred to middle school he had a very unsettled six months, but in kid fashion at the point we had decided we needed help he suddenly settled again. Am dreading the next transition in 18 months time in case it happens again! It’s tough being a parent isn’t it! Xxx
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It is interesting to see so many comments about school change, there definitely is a link between the change of school and the behaviour changes, I guess it is huge anxiety that causes this. We have another two years until the next transition and I really hope that we have a diagnosis well before then as we can get extra help for him with the whole process. It is very tough being a parent sometimes, amazing but tough. Thank you so much for commenting
What an honest post. Sending you all lots of love for what you are going through. I can’t imagine what it must be like and how hard it must be on all of you, especially your poor boy. It’s good to hear you’re finding new ways of coping and here’s hoping you get your ‘old’ son back a bit more often. x
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Thank you, it has been tough and I feel as though we are coping now better than we were.
I’m so sorry to hear this Nikki parenting is so toug!! I remember your previous posts on anger and having very similar struggles with E (11) it comforted me to read I wasn’t only one – I thought I was seriously failing as a mum! This reached new heights when he started high school – it was just awful and I thought I might need to take him to a psychologist (although I think it was for reaction and to demonstrate how frustrated he was he even wished he was dead). I think it was largely to do with transition because he has settled a good bit. I removed the Xbox for ages and lots of other things limiting external influence and maximising family time. Only really because all I wanted was to be able to calm him by snuggling and rocking like when he was a baby and this was one of the only ways I could think of to control the situation. I used to wonder where my boy had gone and now I see him much more. I really hope you find methods that will help you and him manage things better too. You’ve given me strength sharing your story so many times – if you ever need anything or just want to vent then I’m here. I think from Sonyas reply this is more common that we realise and yet everytime I’ve been struggling everyone else seems to be managing so well – I’m very grateful to blogging or I’d feel very alone. Xxx
I have been overwhelmed by the lovely comments that I have had on here and privately after this post and it does seem that it is very common. I think the change of school is such a big thing that even we don’t realise what a huge impact it has on them. I would love to take the Xbox away but I think that might cause more trouble than good, it does seem to be the one thing that keeps him calm at the moment but we are going to talk about that subject at our next meeting. I completely agree about blogging, it is so good sometimes to share as you will always find someone who has had similar experiences or can offer helpful advice. Thank you so much for commenting
Oh Nikki, I’m so sad reading this. Poor boy trapped inside that anxiety. I really feel for you, mainly because we are going through something similar. I understand totally what you’re saying about school and wider family not understanding or even seeing it. And the waiting for help because the system is so crammed full of children needing this kind of help but you’re desperate. It’s exhausting. I really hope you all get the help you need ASAP. So sad to watch on once fun loving children change so much. Treasure the glimpses of the child you used to see, he’s still there, he just needs lots of love and encouragement to come back. When he gets the right help, I’ve no doubt that he will. Lots of love. X
I’m sorry that you are going something like this. Exhausting is an understatement and it really has had such a huge impact on our lives as a family but you are right about treasuring those glimpses, I really do and I have to remind myself that he is still my ten year old son, my little boy and even though it is really hard, I hope to get him back eventually. Thank you for commenting, I really appreciate it
This has really struck a chord with me hun and I am so sorry you are going through it. We went through something very similar with our teen when he was 11 and not long started high school. We saw a huge change in him and we too experienced violent outbursts. It put a huge strain on our family life, and yes it was like skating on ice. I felt anxious going home sometimes as I would never know what we would be faced with. We called them flair ups in our house, and sometimes these would last for 4 hours. I have never written about what we went through, and you are very brave to write this Nikki. We got the help for him via school as his behaviour spilled into school unlike your sons. We saw professionals, yes it took a long time, but when we saw finally saw the right person she was wonderful. She immediately knew what we were going through and diagnosed him with social anxiety. We were given lots of help in helping him deal with it, and I now have my son back. Really hope you get the help Nikki and if you ever want to chat please email/tweet me. Hugs love xx
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Thank you so much for commenting, it is really reassuring to read these comments and to see that so many people are going through the same situations. I’m so glad that you managed to come through the other side, I hope that the diagnosis process will eventually get us to a point where we can move forward but I have been looking into social anxiety and it certainly could be what we are dealing with.
This is such a scary post! My little lad, who’s just become an older brother, is three and a half, and it is already a huge effort to get him out of the house. I feel as though I could be reading about him – screens, not wanting to get up after his naps, spitting and hitting when he doesn’t get his way, but at the same time doing really well at nursery. I’ve been putting it down to him pushing boundaries and the fact I find it almost impossible to keep my cool with it, due to my own anxieties more than a little, I think. At the same time, I’ve been concerned that I’m handling it really badly and creating exactly the situation you describe.
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It is so hard, it could be a reaction to becoming an older brother, that can have a massive impact on younger children. If it carries on, it might be worth getting some advice but hopefully it is a phase and he will come out of it but it is exhausting and I hope you come through it. Thank you for commenting
Really feel for you. Can relate to a lot of what you say with my eldest. He was diagnosed purely because he was so unable to cope at the time we had to go down that route. It is so tiring for us as parents though isn’t it. I know that I desperately would love just one day off when i am not having to deal with the feeling of being on edge all the time because aggression or meltdown could happen at any moment. Hope things feel more settled for you soon. One of the things that worked wonders for our son was Occupational therapy – far better than any of the other strategies that were suggested to us xxx
Thank you for commenting, it is really good to hear other people’s stories and I will certainly ask about Occupational therapy when we have our next appointment. That is the biggest problem, the feeling on edge all of the time because you never know what to expect. I would love to be able to relax.
The fine at school / exploding at home is what we had with my eldest daughter (now 9). It then developed into anxiety at school so at last we got referred, and got High Functioning Autism diagnosis this year. I didn’t want a label so young really, but it’s the only way to get the support they need. On the other hand, as an autistic adult, I have some understanding of how her brain works (sometimes!) Whatever diagnosis you do/don’t get, he’s still who he’s always been, and I’m sure with a little support he’s going to do brilliantly in life 🙂 Anxiety sucks, and it’s so hard to see in your child. Best of luck with appointments xx
So glad to have seen this post Nikki and like others, admire your honesty which in turn helps others to speak out or at least feel they aren’t on the margins. We’ve not had such extreme behaviour but i recognise the screen thing with our 11 yr old – almost like a comfort blanket? and anxieties about losing/mislaying homework or school items which then affect his sleep. He’s the sort of person who the day after his birthday would be organising his next birthday in detail. He’s happy with plans, lists, charts and needs to know exactly what we will be doing everyday throughout summer holidays. Although it’s helpful having someone so tuned into train timetables, and meeting connections on time, it can impact on his present enjoyment. He’s also a loving child who sits next to me on journeys and holds my hand. I hope for you this is a phase but it’s never a bad idea to seek professional advice and at least it will put your mind at rest. xx
I’m new to your blog but thank you for your open and honest blog. I hope you get all you need and you rediscover your son again. -x