To all those of you who have had babies, you will instantly understand this feeling I am about to describe, and for those who haven’t had children yet, just wait, I’m telling you, it’s one of the single greatest pleasures in the world.
When your baby, your little tiny bundle who has practically only learnt three things in its short little life: to eat, sleep, and cry – giggles for the first time; that all-important, from-the-belly giggle that is so unexpected and infectious it makes you cry with joy and you have to make yourself stop laughing so you can hear it properly……
Do you know that feeling? If so you will treasure that memory forever and if you’re not quite there yet, Just wait for it, because there is nothing more joyful than an eight-week old baby who can barely even move making this sound. Some of you may even have managed to film that first giggle on your camera like I managed to with my youngest. Its something everyone talks about. ‘Remember when she giggled for the first time?’ Imagine not ever having that ‘first time’ with one of your children? Not hearing them giggle from the belly, hearing that sweet sound that you could listen to forever. We tried so hard to make her giggle and in turn, she tried so hard at giving us that pleasure but for some reason, it just didn’t materialize. Were we to blame? Weren’t we funny enough? Why wouldn’t my baby giggle?
We exhausted ourselves trying. We tried Peek-a-boo and making really ridiculously silly noises – still nothing. What was wrong with us? I had no idea. It was completely devastating. Sometimes she gave a meek little laugh which we got so excited about and then as quick as a flash she wouldn’t/couldn’t giggle fully. At the time I never realized it could be a symptom of anything, I just thought we weren’t that funny. The more we tried the more upsetting it became. Especially when you have other people in your life, friends and family with children of similar ages hitting these important milestones. There were more of these, rolling and sitting, crawling and walking were all delayed. One of my best friends had a baby 9 months after me and he had caught up with her quite quickly. Looking back at pictures of them together makes you realize how behind she actually was. At 14 months she was just like a baby, she was still tiny and hadn’t walked yet, would just roll around on the carpet dragging herself along the rug like a soldier in combat.
I’m not completely sure at what age it was that her behaviour took a turn for the worse, but I can specifically remember saying to mum once, “ I’m sure she has autism you know.” It was a throwaway remark that I hadn’t even thought about before, and it festered and festered. I was parked outside her house and I was trying to practically wrestle my 1-year old into her car seat. She was kicking me in the head, head butting me, slapping my face and pinching me. Finally, she was in and she couldn’t hurt me any more so she turned on herself. Mainly on her arms; she would rest her teeth on her arms and push pressure on the arm until she hurt herself, or she would slap her forehead really hard. Do you know when you see women in the car park bargaining with their children to just stop going rigid and please get into the seat? That was us. But imagine this: every single time you tried to go out in the car or for a walk in the buggy you would be beaten up, mentally and physically. It didn’t stop once the buckles were locked, oh no we would have screaming until she choked, she would take off her shoes and throw them at me whilst driving. I just got on with it.
Life, in general, was one massive battle but it became normal for us. I ignored her, strapped her in whilst after the 5th time of being spat on that day I cried inside. No one could see the tears while I was driving, crying silently, a sob escaping now and then. I was tired. Eventually, we just stayed in. I couldn’t take the pressure anymore. It was easier to live in our own bubble, doing what we wanted when we wanted. I still take her shoes off now when we go out in the car for fear of them being thrown at me whilst driving. I couldn’t understand it; Stanley was so good, so laid back he was horizontal. Why was my precious little princess so demanding, so controlling, violent and emotional? What had I done wrong?
She wasn’t given any chocolate, sweets, or juices and we ate healthily. It must be me. I was a bad parent. And that throwaway comment I made to my mum that was festering in the back of my mind made a re-appearance. Could she possibly be autistic? Nope. She had eye contact and was social. Definitely not!! Don’t be so stupid!!!
She only got worse. By the time she was walking, she also learned how to undo her car seat belt and buggy straps; I mean this kid was like Houdini. I swear we went through three car seats and numerous buggies and each time I would say to Kenny “don’t worry she isn’t getting out of this one, I’ve tried it and it’s stiff for me” Pah! Within three minutes she was out. She had no danger awareness either so would just escape whilst I was driving. I didn’t know then what I knew now about Sensory Processing Disorder. If I had known I could have used distraction, made it more comfortable, understood her needs and helped her more. Instead, I was clueless.
She hated being confined, hated being strapped in and hated the feel of the straps on her shoulders. It physically hurt her. By age two she wouldn’t even entertain getting in a buggy, and she wouldn’t hold my hand either. She would scream blue murder on the street I was hurting her. I had to drag her everywhere. I couldn’t let go of her hand, as she would just run away. She was a runner! Eventually, I just used to run with her because it was easier. Do you see what I mean about being controlling? She controlled our lives from day dot. I walked in whichever direction she wanted me to walk in; I drove whichever way she wanted me to drive. I stayed up cuddling her all night, because even after a full-on day with her she would not sleep, well she would but only in my bed in my arms with her head touching my head.
I remember even then how well we used to fit together her little forehead rested perfectly just in between my eyes on the bridge of my nose; yes, we were that close, all night every night. God forbid I tried to sneakily change sides with Kenny for a break and a ten-minute nap. All hell would break loose and then we would have to start all over again. It was so draining; she was slowly sapping away my strength, my patience, my joy and my happiness. It was all being sucked out of me. I was just on autopilot most of the time, functioning because I had to.
At some point in between all this, we moved into a house, from a flat so the children had their own bedrooms. But before they could go into them we needed to decorate. I wanted Lolly to feel safe in her own space, and her brother to have his own getaway, so we moved them both into our room whilst we did it. Big mistake! She was such a light sleeper when she was asleep that just me turning over would wake her. The boy slept through anything. But she would wake all night and not stop screaming until I put her in with me. It was nice to snuggle at first but then it just got ridiculous. She was like a little monkey. Clinging onto me throughout the night so I couldn’t move. I tried my hardest to sleep but couldn’t.
When her bedroom was finally finished she hated it (arghhhh!) so we tried controlled crying! It worked after a few nights but she would still wake up and get in with me. I couldn’t make her shake this habit! She was three years old and still sleeping in a cot at this point. So I changed her bed hoping it would help. Eventually, something changed and she started sleeping properly in her room for the first time. I was even more shattered than before, not knowing what sleep felt like, sleep tired me out! That didn’t last long anyway, but we will come back to the sleeping habits soon.
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.