Ok, I’m taking a risk with this next chapter; I’m opening up completely, the truth of how I coped with a very challenging little girl and the awful cycle that we got caught up in. Please remember that this is happening daily, people are so sleep deprived and frustrated that they are not thinking clearly, a dark fog has settled over life in general and nothing is shifting it. I don’t pretend to be the perfect parent, what actually is the perfect parent? I’m not entirely sure that one exists. This was a time in my life I can honestly say that I am pleased is over. We weren’t being listened to and unfortunately, some people just break. I did break at this point in our lives. I am a much better person for that now though and have learnt from my many mistakes. What I am trying to say is, it doesn’t matter whether your opinion on this chapter is negative, I already know that my parenting was failing at this point, so please be kind.
Symptom 4, 5, 6, 7. At just over 15 months my daughter started walking and beginning to “play” Or more appropriately put, annoy the hell out of her brother. Whenever he was playing, – and Duplo bricks were his favourite things to play with – she would just follow him around wherever he went and she kicked apart or ran off with what he had made. She would pick up objects and smash him over the head with it out of the blue.
She was very disruptive and violent. When we were in the house she wouldn’t be interested at all in playing with her toys, (Of which she had plenty). She would not be content to just look at a few books or play with some blocks whilst I did some washing or some vacuuming, and she wasn’t interested in any TV programmes. She would rather do the housework with me and followed me everywhere. Even if I sat down to play with her or read her a book, her attention span was so limited she would just run away and find out her brother again and become violent to him.
He started to avoid her. She would bang on my bin with wooden spoons; she would get tissue paper and stand for ages wiping the condensation off of my windows. She would lick them. In fact, she used to lick a lot, She would spit all over herself when she was frustrated like a dribbling type of spitting and her growling was awful.
She used some words when she was little, not many but she could say ‘mumma’, ‘dada’ and a few others, but by the time she got to between 18 months and 2, all I heard was grunting, screaming, scowling and the most prominent noise she used was a growl. You knew when something was wrong because all you could hear was her growling at someone. There were hardly any words anymore. She had regressed and I didn’t know it at this point but children regressing should have been a big red flag where there is a concern for autism. Still, at this point, I didn’t even know a lot of the symptoms. I mean, I had read about it, but just knew about the symptoms listed on the websites, and not the ins and outs.
At some point, I said to Kenny, “I’m going to the doctors with her, her behaviour isn’t right.” She was different somehow. She didn’t understand right from wrong. Nothing had meaning to her. I tried the naughty spot; I mean, we were there for two weeks and still it was taking 100 times to get her to stay there and even then it was only because she had fallen asleep. So we gave up.
I think she was about 2 years when I finally went to the doctors about her behaviour. I had taken some online autism quizzes, I had read up about autism, A LOT. I went in there and I told the doctor all about it. We had already had two diagnoses in the family by now, one with classic Autism and the other with Aspergers. I told the GP the family history and all of her symptoms and the challenging behaviour she was displaying, and actually saying it all out loud to someone was a relief and I didn’t realize how long that initial appointment would take. I felt stupid though, she was smiling, she listened, she did some things I asked of her, and she was social. But I just knew in my heart that it was deeper than those things. And then the GP listened to her chest because she had a cough and I asked him to make sure she was ok. At this point, she was restless and just wanted to become the doctor. She took his stethoscope, which he happily gave up, most probably for his sanity and she climbed on his lap, pulled up his shirt and started listening to his chest, I was so embarrassed. She was overly social.
So the Doctor listened, but wouldn’t refer us to CAMHS (Child and Adolescent Mental Health Services) – he said it wouldn’t be fair to send a child this age to a mental health service because it would stay on her record for life and he didn’t want to hinder her future. It scared me a little, so I agreed and just went home a bit confused. Was he saying she was mad? I didn’t quite know but anyhow we were referred to the Health Visiting Team who was going to come and pay a visit and spend some time doing some observations on her.
Symptom 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, & so on………..
So at this time, I was pregnant again with my youngest little girl. It was about March/April when the health visitors started visiting so I was about 20 weeks pregnant and I was absolutely shattered. Worn out to my very core. Kenny would walk in the door at 5pm and I would hear his key turn and I would quite literally be passed out by the time he walked through it. He would have to do dinner and bath and bed. I used to nap in the day too. How, you ask me? Well by this time she had an obsession and I love this video so I’m going to share it with you. It was a 20-second video of her singing ‘Baa Baa Black Sheep’. Or trying to! It’s the cutest video in the whole world. But I would give her my phone and she would play it over and over and over again for about an hour. If she couldn’t watch it she would breakdown, there was something about it that grabbed her attention so much that she was never satisfied unless she had watched it dozens of times. (Excuse Stanley calling her stupid at the end of this video)
She was so full-on at this point, all her and her brother ever did was argue (nothing changes) But I tried to help him understand but he was only little. I shouted a LOT at this point. I’ve never smacked my children. But I used to lose my temper with shouting badly. All day every day all I did was scream at them. I hated the sound of my own voice. I hated myself. Every time I went to bed I would spend at least an hour beating myself up for shouting, thankfully I have learned from that now and I’m a much better person because I understand more than I did before. I’m not a perfect parent, yes I shouted, but I love my children unconditionally and I was so sleep deprived that it was torture. I was heavily pregnant and very, very tired.
My eldest boy had withdrawn from me completely at this stage. I had alienated him. He was put second. She was first. Everything I did it was for her to keep her calm, to stop her screaming. She screamed and he got told off! I couldn’t help it; I was in a really bad cycle. I thought he was intelligent enough to understand. He was. But I shouldn’t have dealt with it this way. He may have been intelligent enough but he was a kid too. He wasn’t allowed to be himself. He was trapped inside a house with a pregnant, screaming, neurotic mother and a wild-child. Says it all really doesn’t it? I will never forgive myself for him losing two years of what should have been fun, memory making, exploring the outside, free, years.
I couldn’t breathe. I was lost!
She used to ask people a lot if they had a minnie or a willy. I’m not quite sure why. But looking back maybe it was a literal thing. When she was first noticing her brothers’ body parts were different I had explained that boys have willies and girls have minnies. Maybe she was just wondering if it was a boy or a girl! She used to get too close to strangers when talking to them and really stare at them. I used to have to move her back a few paces, and she did this with her friends too. She is still the same, completely unaware of personal space.
She had become very violent by now. She rarely hit me anymore though. I think she knew I was the one and only person who knew her and was able to get her or do for her what she needed. But one day as we were playing on the floor she was quite happy but she switched very suddenly and stamped on my belly! It was excruciating. I was so upset. I had had miscarriages before so It made me really, really paranoid. Most of her violence was aimed at Kenny and she used to punch or slap him around his face so hard. One time I saw it and I realized why she was doing it. It was because when he was speaking to her he was on her level looking her directly in the eye. It made her uncomfortable. No one should ever make anyone with autism look them directly in the eye unless they want to. I don’t care if they want respect or whatever it is you just don’t do it. She didn’t like it. He was invading her space and at this time her eye contact was sparse. He stopped doing it. She stopped slapping him. And actually, her eye contact is brilliant now unless she’s having an “AUTY” day. Sometimes she can appear normal to us and other days it’s so obvious it’s unreal.
So the Health Visitor came and listened and watched. She played games with her and all she wanted to do was take her notepad and pen and draw (again, nothing changes). She was a lovely health visitor and so kind. She could see that she was hard work but openly admitted she couldn’t pinpoint anything particular because of how social she was. She was so social. When the Virgin Media engineer came round to install the TV she asked him if he had a willy. Then when he was leaving she asked for a kiss. I just had to explain to her that he was a stranger. She didn’t have a clue she had tuned out and was bashing Her brother again with the brand new remote.
Eventually, after about 9 months she referred us to the paediatrician.
But she said a definite NO to Autism.
She had her own special routines she liked. It wasn’t anything specific in the day-time but our bedtime routine was very specific. I would give her a bath, put her pj’s on and get her milk. Then I would lift her up and do ‘rock a bye baby’ and when the cradle fell I would drop her into her bed and say good night kiss and then immediately leave the room. God forbid I got any of that routine wrong because we would have to start all over again and she wouldn’t be getting to bed for hours!! This was when she was still in her cot. At 2 ½, by the way.
She has severe sensory sensitivities. She hated her hair being brushed. Would scream so loud I was worried my neighbours would call Social Services. Actually, I’m surprised no one already has – she has some lungs on her that girl. I mentioned to the health visitor about her hair and she decided to test it. Bearing in mind I’d already done it so it wasn’t knotty, And she’d given Lola her pad and pen so Lola was in role-play heaven. She proceeded to brush her hair, and I swear She did not even murmur!!! Geeesh give me a break eh?
Her sleeping habits had properly deteriorated by this time. There I am, just about to drop at 9 months pregnant, and she was up and down all night screaming. She couldn’t communicate with me. She didn’t know what was wrong with her. But she went to sleep fine, out like a light and then 20 minutes later she was up screaming and this lasted until well into the early hours. Again I just bloody well got on with it, maybe I was still on auto-pilot at this time? Who knows, but after a while, it got to me. I started getting ratty at her in the night. I was like a walking zombie. That didn’t work. So I just held her and laid her back down when she was asleep again. Half an hour later I’d do exactly the same thing. For months and months and months I had not had one full nights sleep. Kenny couldn’t see to her because if she even heard his voice in the middle of the night all hell would break loose.
So we were referred YAY!!! Surely the proper professionals would see what I saw?
Will YOU be a part of the project that hopes to change autistic lives for the future? We have already published Book 1 – Playing with Bourbon Badger in the Autism with Lola children’s book series and for the Autism with Love Publishing® team to be able to continue helping the next generation understand and accept differences in neurology a kickstarter campaign has been created and is ready to launch on 24th February.