We moved house at the start of August, just weeks before T1 moved into Primary 4. I naively thought that T1 wouldn't be fussed by the move as we only moved across the road. It was painful for him to be able to see our old house out of our new window. Despite our new house being bigger and him having a room of his own, which was much bigger, he took a good six weeks to settle into the new house. He used to sit by the window and look longingly at our old house and sleep on the floor sometimes because he said his bed didn't feel right in our new house.
The boys and I moved into the new house with my new partner. I got on well with him but after around 6 months, it became clear that we weren't going to work out long term. T1 found his sarcasm and childish behaviour difficult to comprehend. T1 may have picked up on the disharmony between us which may have unsettled him.
T1 had two teachers in P4 who job shared. In the first part of the year he felt that his teachers 'did not understand Autism'. I had given his teachers a profile of his current strengths and difficulties and some information on ASD. This is something I do every year as the information personal to T1 changes.
I have always felt able to cope with whatever T1 throws at me but his behaviour during this time was becoming increasingly difficult to cope with and I knew it was becoming a serious concern when he was distressed both at school and at home. At the height of this phase, his school teachers were saying that they were struggling to cope with him in a mainstream class and that they weren't too sure how much longer they could go on. I felt like that myself on a few occasions and was feeling at a loss as to what to do for the best.
The school sought input from their Educational Psychologist to see if she had any further ideas or strategies that would be useful. The head teacher initiated regular formal meetings at school to make sure that we were all communicating as much as possible. These meetings took place monthly when things were at their most difficult. I consider myself quite a 'holds it together' person but I burst into tears regularly at these meetings. I was so worried about T1. I must point out that t1's difficulties at this time drained me emotionally. I felt upset that I couldn't change things more quickly and guilty that perhaps I may have contributed to what was going on. It is really difficult to ask for help when you are feeling broken by what is happening but I managed to seek help from a variety of places which I will detail below.
I have listed some of the issues we were facing at that time:
- T1 seriously hit and bit his brother and verbally abused him for no apparent reason
- T1 was physically aggressive with me on a few occasions including one time in the middle of the street where a passing man had to intervene. He was growing in strength and it was scary.
- T1 would be awake at night several times and require my assistance and reassurance to get back to sleep e.g. waking me up because he thought he heard thunder and not being reassured that that wasn't the case. I was exhausted from the sleepless nights.
- T1 was exhausted some days as he had been up several times in the night and this made him more susceptible to being aggressive
- T1 would become very angry if I changed small things in his routine e.g. having pizza instead of chicken
- T1 would be verbally and physically aggressive in the classroom with both teachers and pupils
- T1 would feel such remorse after incidents that he would sometimes bite himself or write notes about how his life was hopeless and that he wanted to die
- T1 got into a habit of confabulating elaborate stories about things he had done or wanted to do
- T1 expressed that he hated having autism and would refuse to talk about this
There were probably more to add to that list but those are the main things I can remember now. I wish I had written about it at the time but I'm not sure I would have had the mental capacity to do so!
I will now try to explain the things that helped during that time:
- I didn't behave in a way that made it look like I was panicking (even if I felt like it inside) - my child is hitting other kids, some of which are my good friend's children - cringe!! My child's teachers are saying they are struggling to cope with him - oh no!! My son is telling me that he wants to die and hates having autism - noooooo!! This phase didn't start overnight but it progressed over a short time and it wasn't long before I was at a stage of either panic or stop and think of the steps I needed to take to make the situation better. On the face of it, it looked like my son was aggressive and suicidal at 8 years old. I didn't see it that way. Obviously I was shocked at the extreme nature of his words but I saw it as a way of him expressing to me just how difficult things were for him and a way of making his family sit up and listen. I didn't rush him to the Doctor because essentially he could not help with most of the things that needed to be done to help. I did get an objective opinion in the end from a child psychiatrist (by referral from our GP) to make sure that I hadn't missed anything and I did not request this assessment because I thought they could fix the situation.
- I monitored and promoted positive mental health - It is really common for people with ASD to have anxiety and mood difficulties at different times in their lives, especially those times when routines and environments have changed or are unpredictable. I have some knowledge of these difficulties through my work but nothing could have prepared me for lying on the floor with my 8 year old son who was sobbing uncontrollably after an incident where he had been aggressive. He told me whilst we lay together that he wanted to die and that he wanted me to get rid of his autism. I try my best to never cry in front of my children but I would challenge any parent not to shed a tear in that situation. I lay next to T1, unable to hold him close because it would be too much touch for him. I could have bribed him with nice things to make him feel better, distracted him by being goofy or told him 'don't worry, things will be fine'. I didn't do any of these. What my little boy needed was for me to simply be there and to listen and talk softly about how things were. We chatted in general about how most children with autism have times when they don't like it and that things were so difficult at that time that he was so sad he wanted to die. I told him that I loved him and that that meant that I would always be there for him, as would our whole family. We would do what we needed to do to make him feel safe and would not be angry with him for the distress he shows when things get difficult either in anger or sadness. I had to repeat this several times over some weeks but it was really important to do this so that he felt that I was listening to him and that I was doing what I could to make things better. What was also important was to re-iterate to him the practical things we were doing as a family and as a wider team around him that would make things better over time. He didn't believe things would get better. I had to show him that I had hope when he had lost sight of his. A friend had a great idea and suggested I make a box of positive affirmations about T1 and encourage him to pick a couple out each day. This was to promote self-esteem and included statements like 'I will always be loved by my family' and 'I know more about geography than the average 8 year old'. T1 enjoyed this and this became part of his morning routine. A very simple idea but really effective.
- I asked for an objective opinion - when I felt out of my depth and felt that I had run out of ideas, I sought an assessment from t1's consultant psychiatrist. I didn't think I would be doing my job as a parent properly if I didn't ask for an assessment given his low mood and extreme agitation and anger. I wondered at the time if he had difficulties with impulsive behaviour and if he was truly suicidal. He was seen within around 6 weeks of referral and the assessment concluded that no, he was not impulsive and developing ADHD type symptoms but displaying quite usual behaviours for a child with ASD who had been through so many environmental changes and changes to his usual routine. I trusted this opinion and was glad there wasn't anything to add to his diagnosis of ASD but on the other hand was still wondering what the heck to do! I just knew it was my job as his mum to do what needed done because I would be the most efficient at doing it.
- I leaned on my friends, family and colleagues - my close friends and family were there to listen and help as required with a non judgmental attitude. I don't mean the ones that say 'every child is different and go through phases, it will get better soon'. That was no use because I honestly couldn't see an end to it at that point because I had no plan on how to turn things around. The really useful friends said 'I am here for you, you are not alone'. I felt bad about going on about T1's tough times but it was really important to let people know the difficult stuff we were going through. My friends told their children about how T1 was struggling in school so that they could support him too. My colleagues at work were very supportive at this time when I needed to take time off for school meetings, hospital appointments and because I was so drained on some days I had to go into work late or take the day off. The people closest to me were the ones who gave fantastic suggestions on how to make things better and gave ideas that made common sense when I couldn't see through the fog I was in. If any of them are reading this... you know who you are and a massive thank you for your kindness and support :-)
- I communicated well with school staff - we had an agreement during this time that I would call to let them know in the morning if it looked like it was going to be a bad day with either aggression or sadness and that they would let me know if incidents had occurred in school. This was so useful and I really trusted that they would let me know the relevant things that happened, not every word or little argument T1 had. Where a consequence was required then school would give this in school time unless they felt it was of a serious nature that had to have consequences at home too. The head teacher was involved during this time as T1's difficulties were having such an impact on school life. I felt his school were trying their best to do what they could to improve things.
- I communicated well with my my ex-husband (DP) - we had to communicate very well and at least weekly about how things were going and making sure that we were saying the same things to T1 and implementing the same consequences for difficult behaviour. It was important for T1 to know that those closest to him were being as predictable as possible in order to change his behaviour to more positive ways of expressing himself.
- I looked at my finances and got the help I was entitled to - I knew that t1 was most likely entitled to Disability Living Allowance (DLA) but hadn't got around to applying for it. It is non means tested for a reason, because despite having enough money, raising a child with a disability places more pressure on your finances. Having to make more time to be around and supervise T1's behaviour prompted me to apply. I thought it would give us more funding for doing activites with t1 that he enjoys but cost money. E.g trips to a favourite airport to planespot. We also required to buy some equipment for him e.g. sensory toys. We also applied for a Family Fund Grant and a grant towards a holiday (Take a Break) - and I really needed a holiday to look forward to! We were awarded all of these and they helped so much in giving more resources through our journey with T1.
- I made time to do all that I could to get things as right as I could for T1 - things had been going reasonably well since diagnosis but a crisis like this reminded me that my little boy has a neurodevelopmental disability. I may have to support him in a variety of ways throughout his life and was able to accept that the support required would come and go in phases. His parents are the people who know him best and any support he requires I felt had to be directed by us. I did not feel it was acceptable to ask a Doctor, Educational Psychologist or teacher to solve the problem, however, their advice is vital. Helping T1 was very clearly a job for all those working with T1 with us, as parents, having the largest role. During this time I made sure that I made regular catch up times with T1, time to accompany him to engage in his interests, gave him things to look forward to (not bribes) and made sure that I kept him as healthy as possible to give him the energy to be able to accept and act on advice. This involved keeping as much as possible to a clear routine and taking time to support t1 if the routine changed. He needed lots of sleep, good nutrition and plenty of exercise and fresh air. It was my job, and still is, to encourage this as best I can.
- I got external support just for me - when t1 was first diagnosed I was told about a third sector agency who offered carer support. I didn't feel that I needed it at the time and the leaflet hung around in my paperwork pile. In the midst of this crisis, I remembered where to go for help, for myself. This was really hard, emotional and drained me of energy but I had to keep going for our family. I met with a lovely carer support worker who was there just for me. This really was invaluable and we met fortnightly at a time that suited me. She also offered to see me at home if I needed. She had a comfy sofa, a large warm mug of tea and a biscuit. The value of these can never be underestimated! She was clear that she was there for me, to listen and offer tissues when I needed a good cry. It was in this room that I was able to express the heartache I felt that my son was facing such overwhelming challenges and worries for his future. It was this lady that gently prompted me to apply for benefits and grants to help with the practical things. She also encouraged me to meet other carers and access the range of free services for carers such as free massage and reflexology. I don't meet regularly with this lady now but I know where she is if I need her.
- I tried my best to stay healthy - I had to keep myself in tip top condition so that I could wake every day with the energy to cope with what came up. I went to bed by 11 and got up at 7 every day and tried to stick to this sleep routine. I tried not to nap so that my sleep routine would be as consistent as possible, despite being woken several times in the night by T1. I ate well, having my 5 fruit and veg portions per day. If I didn't do this I felt really lethargic. I tried to avoid loads of sugar, despite the fact that I wanted it, as this just gave me an almighty sugar low which confined me to the sofa and got me down. I also avoided caffeine as the headaches were unbearable. We all tried to get outside as much as possible for fresh air, sunshine and exercise, even just for a 10 minute walk. This was especially useful when T1 got caught in a repetitive moan about something that he was feeling sad about. Gettting out and into a different space with distractions took the focus off his feelings for a bit and was restorative for all.
- I asked school for extra support for T1 - School arranged for T1 to meet with a behaviour support teacher every week for at least half an hour. He was a male teacher who was very wise and displayed a good knowledge of ASD e.g. he brought in pictures of supercars for T1 to start the conversation off and build a relationship with him at the start of each session. T1 respected him and felt able to share how he was feeling and discuss incidents that had taken place both at school and at home. T1 was able to tell this teacher about things that he couldn't share with me e.g. he hated how I nagged him a lot and raised my voice some mornings. I thought that was really helpful, of course it's what most parents do at times but it was really important during this time of trying to gain T1's coperation that I listened and tried my best to stay calm in the morning. Over time this teacher only saw T1 for 15 minutes a fortnight to maintain the work that he had done. He taught T1 about how to manage anger and anxiety and how to restore friendships once there has been a disagreement. This is what T1 really needed at the time.
- I got support for T2 - Things were really tough for T2 during this time. He was the subject of physical and verbal aggression from T1 and time with him was often limited due to the needs of T1. His favourite activities were often cut short due to having to return home because T1 couldn't cope. I tried my best to make special time with t2 during this period when we could be alone to do activities but I still felt incredibly guilty. I tried my best to explain what was going on and how we could all help each other. T2 was only 6 at the time but was really resilient and he did all he could to help his big brother. I let T2's teacher know what was going on for him at home. She checked in with him every week to see how he was doing and let me know if she had any concerns. I also referred T2 to the local young carers group. He met a worker at our home and in fact that very day he had been bitten all the way up his arm by t1 so it was good timing for meeting this worker! This worker supported t2 weekly for a period of 3 months both at home and at school. It was a space for him to share his feelings about how things were going, how he felt about it and how it affected him. T2 doesn't see this person now but can access it again if he needs to.
- I encouraged contact with T1's classmates outside school - As always, T1's friends supported him through this time, despite the fact that he hit a a few of them! They made really useful suggestions like things that he could do in class and prompted him to take time out if they saw signs of aggression etc. T1 often listened more to their opinions than the teachers'. I set up lots play dates with his friends around this time because I felt it was important to keep encouraging positive friendships through a time where he expressed sadness at having autism and feeling like he didn't have true friends. My friends whose children were in his class were extremely supportive in arranging these despite the fact that T1's behaviour could be difficult during these visits. I will forever be in their debt for their support and that of their children.
- I insisted that school meetings were formalised - it was very important during this time to have regular formal meetings. By formal I mean that there was a chair and that minutes were taken with clear action points that could be monitored. This aided communication within the team of people who were involved with T1 and meant that any issues could be dealt with in a timely manner and that everyone knew what part of the plan they were responsible for.
- School adapted the classroom - T1 was given a designated chill out corner in the classroom and was encouraged to take 'time out' by his teachers as required. Over time he was able to recognise the need to do this himself and was able to ask for time out. Time out usually lasted for around 5 minutes and the teacher would intervene during this time, if appropriate. T1 had favourite books available in this corner and was still able to hear what was going on in the class. T1 was able to take some favourite books, teddies or aeroplanes into the classroom during this time. Whilst he didn't play with them in class unless it was invited, he just somehow felt more secure having these objects in the room. They were often placed on a shelf overlooking him. T1 was quite unmotivated to do most class work at this time. He became distressed and cried when he couldn't pick up maths quickly. He was moving from mental maths, which he was good at, to having to work things out and he lost patience trying to learn. He fatigued easily when writing due to hypermobility so he became frustrated and angry at times when asked to write. PE presented difficulties in group work and general poor coordination. Art time was unstructured so he struggled with this and would often display inappropriate behaviour and shout out during this time. His teachers learned that T1 would be more motivated to work and pay more attention if most topics could be related to his special interests. These were aeroplanes, supercars and geography at the time. They were really good at linking his interestes to the work they were doing and this gradually improved his motivation to do class work. T1 also had ad hoc pupil support time both in the classroom and in another room as required. I trusted that his teacher would judge when this was required so this support time was not formalised e.g. set time every week. It was also a small school so a formal system would probably not have been possible.
- I didn't let my heart rule my head - Seeing T1 so distressed was so difficult. It was easy to understand how some parents fall into a habit of trying to make everything positive in a difficult time. E.g not being too hard with consequences for difficult behaviour. I was very clear throughout this time that I would continue to set consequences if instructed by school and for aggressive behaviour at home. This included hitting, spitting, biting and swearing. This took the form of 8 minutes time out in room and banning of screen time for 1-3 hours, depending on the severity of the behaviour. Some people suggested that this was harsh given that things were so difficult for T1 but I saw it as my job as his parent to very clearly let him know that no matter how hard things are through life, it is never appropriate to be physically aggressive. He hit my friends' children and it was important that they saw that he was given consequences for this and made to apologise sincerely, even if it happened in school. T1 always showed remorse but this usually resulted in him hitting or biting himself to somehow make it right in his mind. It was extremely challenging to follow through with a consequence when this was happening but it was absolutely the right thing to do. He needed to know that I was in control and that it was my job to teach him how to behave appropriately. I did not want to be a parent who was seen as letting him off with bad behaviour because of his disability. He is clever enough to process the difference between right and wrong so he is able to accept the consequences. It took incredible self discipline to follow through on these principles when I was exhausted and wanted to make everything better for him.
- Encouraged T1 to join extra curricular activities - At the tail end of this phase, T1 joined the local Cubs group. The leader of the group took time to read the profile I had made about T1 and met with us at home to plan for his time in the group. This included identifying a time out space in the hall and building a relationship with the leader so that T1 could say if he felt uncomfortable. There was also no pressure for T1 to engage in any activity that he felt he did not want to do or try. This worked really well and he continued at the group for 2 years and even managed a cub camp :-) If that leader is reading this then a warm thank you to you from us.
My oh my this was a long post but I hope that if you made it to the end that it was worth it. It has been cathartic for me to reflect on that phase and remind myself of what works when things get tough.
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