Tuesday, 20 December 2016
Today I hit the wall. The wall won and I had a full scale meltdown, one to rival the intensity of the meltdowns my daughter rewards us with on a (far too) regular basis. Later in the afternoon, I sat down to plan a Christmas cookie baking session with my 2 offspring to realise that, quite frankly, I was too terrified and emotionally spent to risk such an arduous task. What should be a perfectly delightful way to spend an afternoon with your little ones, instead poses the risk of being screamed at for an hour because you’ve not done something quite right. You’re not sure what that something is, but it’s not right. You know this, because you were screamed at the night before when trying to make Christmassy glittery lights and being rewarded with bloodcurdling screams and abuse.
In the spring of 2014, my daughter was assessed to have Oppositional Defiance Disorder (ODD). The path to this assessment was as a result of an ADOS test at a children’s centre. The psychologist who did the test believed that her eye contact and social skills were too good for someone with an autistic spectrum disorder (ASD) and she suggested that we might need to consider ODD. We were then referred for an assessment for ODD and the outcome after a questionnaire and observation was that they believed that she had ODD with high risk of Conduct Disorder (CD). This is thing that criminals are made of, essentially, an inability to understand the difference between right and wrong, you get the idea – a pretty frightening prospect to face with your little bundle of (what should be) joy.
I call her Miss Mayhem.
It’s hard to pinpoint exactly when our problems started. Documented meetings with healthcare professionals all say around 18 months, but it is likely that it was long before that. When it’s your first child, you really don’t know what to expect. The things she did were no different to the normal (annoying) behaviours of an infant and toddler, but it was the intensity, the relentless frequency. When she was 10 months old, I had a parent meeting with her nursery. The memorable observations were: “she is going to be a genius” and, “if she throws tantrums like this at 10 months, what will she do at two?”. I think about these two statements and it’s very hard not to laugh (a derisive, ironic sort of laugh as opposed to a belly-aching funny joke sort of laugh).
At 18 months, she was extremely difficult to manage. She seemed unwilling to respond to instructions and even simple requests. She was wild, aggressive, she would savage your face if you tried to give her a cuddle, twist your nose, dig in her nails. Toddler stuff, but exhausting nonetheless. I managed to secure a place for her with a local childminder for 2 and a half hours a morning, to give me a little time to fix the dents in my suit of armour, ready for the next few rounds. We figured she was just highly spirited and strong-willed. She liked things done her way, the childminder noticed this too, particularly a little quirk that she had which puzzled the childminder (with 20 years experience). Miss Mayhem would point at a toy or item she wanted. Even if it was within her reach, she would point at it and grunt and make noises until you passed it to her. Even if you put it closer to her, she would not pick it up, she would point and grunt. Once you handed her the item, she would drop it and start the process over again. I think we’d noticed this from about 8 months (and thought it a bit odd), but it was only when an experienced childminder seemed to find it puzzling that we accepted it was indeed a little bit strange. I mention this here because, I discovered later, this is quite a significant quirk, something that has cropped up in all the reading I have done.
Most mornings were a battle to get out of the house. She didn’t like her shoes, nothing that I bought, she didn’t like having a coat or jumper on, didn’t like being hot, didn’t like being strapped into the buggy. By the time I’d get her coat on, she would have kicked the shoes off, by the time that was back on, she would have squirmed out of her coat, by the time I had her fully clothed and strapped in, she would be having a full-scale shit fit, eyes bulging, throwing her weight forward and stepping on the strap between the wheels of the Maclaren stroller. I would walk to the childminder with the stroller tipped onto its back wheels, because the weight of her thrashing made it impossible to push it in the good old conventional four wheeled way.
Enter sympathetic glances from strangers alongside a metaphorical speech bubble here:
“Look at that batshit crazy mother and her poor screaming child over there”. That’s me, in all my harassed and disheveled glory.
On New Years Eve 2010, aged two, she appeared to be having a night terror. Dad went to check on her and all hell broke loose, she flew out of bed, face like a possessed character from the Exorcist, eyes bulging, teeth baring (we were only missing the swivelling head) and started attacking him, biting, scratching and clawing relentlessly. He kept pulling her off him and putting her back in bed, she kept coming at him and attacking him. We called NHS Direct as the intensity increased, we feared that we might need to have her sedated. The storm blew over eventually, Dad was covered in bites and bruises (battered Dad) and we were left as puzzled as ever.
I won’t bore you with details of each incident, because there were so many, meltdowns and screaming fits were happening several times a day. I was reading every single parenting book and super nanny website I could find, trying all possible methods of discipline, to no avail. Nothing seemed to work. I recall being in the kitchen when she was around two and a half, thinking ” if having a child is this hard, why would anyone ever have more children?”, and in thinking this, I faced up to the fact that, just maybe, that something wasn’t right. She was under the table screaming at me, refusing to come out, because I had asked her to put her cheese string wrapper in the bin.
It was around this time that I had dinner with a friend, a social worker who supports adults and adolescents with ASD and other difficulties. She had been on maternity leave at the same time as me, so knew Miss Mayhem from birth and had spent a significant amount of time with us. It was this friend who suggested that perhaps we needed to consider that Miss Mayhem was High Functioning Autistic (HFA). At first I was a little shocked that she had said this, my husband certainly rejected it, but as things continued to deteriorate, I had to face up to the facts.
Miss Mayhem was a fussy eater, there were only certain foods that she would eat, nothing saucy, very plain and bland foods only.
She rejected most of her shoes.
She complained about jumpers being itchy, even if I bought the softest acrylic.
She didn’t like noise, we couldn’t play music in the house.
When she got hot, she would start howling and panting and thrashing like an injured animal.
Hyper-sensitive sense of smell, when I cooked a little bit (like one floret) of cauliflower into a cottage pie, she called it “the pie that smells of fart”.
Intense dislike for new places, shops were completely off-limits.
She needed to have her own way at all times, she even started dressing herself at two. Any departure from the way in which she wanted things done, would result in a complete meltdown.
At one stage, if I wanted her to do something, I’d say the opposite of what I wanted, and then I would get the desired effect. Like, “Don’t drink that water”, and then she would pick up the water and drink it, but of course this was a dangerous strategy and not one we could always use. Instead we worked on creating routines and giving rewards when the routines were adhered to. It had been a mammoth battle for us to leave the house each day to get her to nursery, so we would created a routine whereby she wasn’t allowed to go downstairs before she was dressed and had brushed her teeth. Teeth brushing was a nightmare, as was her hair, we had a miniature Albert Einstein living with us, but it was not a battle worth fighting. If she managed get downstairs with her teeth brushed and have her breakfast within a certain time, she would be rewarded with a cereal bar. It wasn’t ideal to brush her teeth before breakfast, but we knew that trying to get her back upstairs for the task would be impossible and could cause a delay of anything from 40 minutes to two hours. Even then, we couldn’t be assured that she wouldn’t refuse to go into the car or buggy.
By the time she was three, things had gone from bad to worse. We could have around six meltdowns per day, all lasting up to an hour or more, she would go wild and trash the house. Because of her refusal to go into timeout and the level of aggression, we started putting her in her room and standing outside the door. She would completely annihilate the room, pull drawers out, fling them across the floor, destroy anything she could and sometimes throw herself at the door until her nose bled. She would only stop when she was so exhausted that she would fall asleep. At this stage I was pregnant with her brother, something which was certainly not planned, we weren’t completely mad. Dealing with Miss Mayhem definitely left us with no desire to have more children, but somehow, due to the stress perhaps, it happened. As I was struggling with the pregnancy, I was reading even more, finding any techniques possible to control the outbursts. Somewhere I read that you should put the child in a safe place, but allow them something to use to vent their rage. And so, after the episode when she nearly pulled a large bookcase on top of herself, we cleared the spare room, taped up the drawers and made it as safe as humanly possible without actually padding it. To allow her to vent, as suggested in the article I had read, I left her a very soft, thin, insubstantial flip flop that she could hit the door with until she exhausted herself. This saved us from bites and bruises for a very short period of time, maybe days, and then, I still struggle to process it, she managed to smash the window with that thin, insubstantial flip flop. It was probably the force of her hand, with the flip flop against the glass, miraculously saving her from being cut. Spare room timeout therefore was no more. We had no more ideas or solutions.
A couple of days later, the Health Visitor called to enquire about my health and pregnancy. I quite honestly told her that I was concerned for my pregnancy because of the high levels of stress that I was being subjected to by my three year old, I told her about the smashed window and the constant meltdowns. Somewhat alarmed, she arranged to see me immediately and suggested that we get Mayhem referred for assessments. She also suggested cranial therapy, which, yes, we tried. We were desperate, we were willing to give anything a go. It certainly calmed her down and made her relaxed around the time of the treatments, but it didn’t solve anything.
Somehow, through all the stress and debilitating headaches, I made it through the pregnancy and in March 2013 we brought home a baby brother for Mayhem. All aboard a whole new high speed super-sized rollercoaster. I had been working through most of my pregnancy, this gave me some respite from all Mayhem’s screaming and meltdowns, but now it was just me, a baby, sleep deprivation, and the wailing banshee. Luckily we were qualifying for our 15 hours childcare grant and we could use some of the maternity pay to keep her in nursery for four mornings a week, which was something, but not nearly enough. Very baffling to us though, was that the nursery wasn’t experiencing anything of the same intensity that we were. Little things and incidents were recorded (when I look back at records), but nothing to cause any alarm (at that stage, again, I will come back to this later).
The day of the long awaited appointment dawned and I took a perfect little angel to see a doctor about the devil that lives in our house. Charming, responsive, perfect, there must be something wrong with the parents .
Once she’d received her assessment of ODD, we were coached for two months on strategies which are used for children with Oppositional Defiant Disorder. This was in September 2014, the support came at a time when we had been through hell and back after a particularly nasty experience at her first school. We saw an immediate improvement after changing schools, with therapists on board at the same time, however, in March 2015, during her last appointment at the children’s health centre, I expressed concerns that she didn’t respond to the strategies for ODD as she should, that she was not “unlearning” the unwanted behaviours in the way that the strategies were targeted to work. In spite of my concerns, she was discharged. If problems persisted, we would have to start the process over again.
And so we have started all over again. In July 2016, they tried to send us down the ODD route again. Poor parenting again.
On this Tuesday, 20 December 2016, whilst searching for support groups and solutions, I decided to start this blog. To help retain my sanity, my sense of humour, to remind me that there is a charming and delightful little girl struggling with problems we cannot even begin to understand. To remind me to keep going until we find the right answers.
Here is our journey