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There used to be this girl in my class at school, her name was Sophie. She never made eye contact with people and mostly was seen walking around school on her own. She kept herself to herself and didn’t talk to us, but she often did mumble along to herself. She was unusual and weird, well that was many students’ opinions. She was never picked on which I guess was good but also no one talked to her, so she always seemed to be left out. What we remember about her is in the first year the fire alarm went off and she screamed with her fingers in her ears until it stopped. There was another time the cafeteria didn’t have any of her religiously eaten lunch of a ham baguette left and she cried and banged her elbows on the table until she was red in the face and couldn’t do it anymore. All we knew was she was different but none of us understood or were told what was wrong with her. Now sixteen years on I understand a little more, my son Logan has both autism and learning difficulties. For the first year of his life Logan was a dream child he was quiet and slept most of the time letting me continue with my usual life, only taking intervals out to make sure he didn’t need to be changed or if he was needing to be fed but by the time he was two something felt wrong. He didn’t respond to his name when we called him, he didn’t speak more than one word at a time, and had some definite strong views against cuddling or being picked up. By the age of three, we had seen a few doctors, but it wasn’t until he was five after many doctors and psychiatrists, he received a diagnosis. My son is on the autism spectrum with low functioning skills along with learning difficulties, everything had changed but at the same time, everything was still the same. He was still our little boy and he hadn’t changed after being labeled but as parents, we were informed that he would be a lot more work and that he may need ongoing care until we were no more.
Looking after Logan sometimes felt like we were in a hurricane we felt constricted in this pathway and we couldn’t get out. We loved him but I couldn’t help but think this is what we are stuck doing for the rest of our life. The worry of what will happen once we die was something that always crossed my mind, however depressing the thought was but who will look after my boy, what support will he have? We don’t know how self-supporting he will be, we were told he may able to live in residential care with a fixed staff team or he may always have to stay with us. Neither sounded too appealing to him. The day we got the diagnosis we went home and spent the evening on Google we searched through a whirlwind of articles about dealing and coping with autistic children and then a string of different medicines and remedies which claimed to do many ideal though unrealistic things. Seven more years took its toll on us, it has been a constant challenge and is both mentally and physically demanding role, but we did learn many new things. We learned things such as going out somewhere for a surprise or having him pick out sweets from the choice of many, along with many other things were bad ideas usually followed up by a meltdown. Logan’s life rotated around his routine, he would get up at 7.30 am which was a good change from his phase of waking up at 5 am and watching Big Cook, Little Cook on repeat until he couldn’t listen to it anymore and was forced to go down and get him ready for school.
When he gets up, everything is in a controlled rush and every minute matters before his taxi comes to pick him up at 8.15. The mornings are usually controlled by Logan’s mood, so a morning breakdown always has to be prepared for as you never know when one is brewing. After he gets up, I get him changed into the outfit that was laid out the night before which usually consists of a plain polo shirt with a pair of black jeans and socks that match the color of his shoes. I then help him brush his teeth and hair then he runs down the stairs ready for breakfast. He is usually left with 15 minutes to have his usual of a slice of toast and a bowl of cereal with milk, this is then followed up with a glass of apple juice with 4 ice cubes in it. Pity helps us if the freezer breaks or the more common I forget to put the ice cube tray in the night before, this would wreak havoc. Although no matter his mood or what I have forgotten to do in the morning the storm always seems to calm down on the walk out to the taxi, as he has always enjoyed school and knows that’s where he is going. He attends a special needs school and with this being a new start this year for certain I was more anxious, something like this for Logan who lives on familiarity this change was a hurricane waiting to happen.
When he comes home within the first 5 minutes the mood of the night is set, he will either come in smiling and excited or he will come grumpy and crying from then on, we handle the situation accordingly but still try to follow the routine without causing a storm to blow up. Usually around 5.20, he would start hanging around the kitchen to see what I was making for dinner, I always tried to make our meals instead of ordering as that can end up being more hassle than it’s worth all the different foods touching each other, and weird tasting sauce on top of the food. Logan’s body was like a routine clock and he knew when it was supposed to be dinner time, most nights he would sit well and eat all his dinner as he knew if it was all eaten, he would get a treat. We used to try and persuade him to have a yogurt over a chocolate bar for his treat, but of course, he loved the sugar and although we don’t always allow him his way, we decided we should pick our battles as small amount of chocolate isn’t too bad and it’s much better than the latter of a meltdown.
Discipline was always something we had to include in Logan like with any child, but it was a lot harder than we thought it would ever be. A small telling-off and order to sit in the ‘naughty step’ was a nightmare. He would scream and on most occasions, he would punch and kick the walls and if we came close we risked entering the target area. We couldn’t tell him off more for this behavior as he would just kick and scream more and we couldn’t tell him it was okay as he would get into the mindset that is an acceptable way to behave, we ended up having to leave him until he had let off all his steam and then ask for an apology. We usually got an apology then we followed it up with a hug and an ‘I love you’, he soon learned it was the best way to do things and it helped us by avoiding some meltdowns. Meltdowns were something difficult to cope with and something I don’t think anyone could have prepared me for. What usually made things even harder though are the looks shot by non-understanding strangers thinking why is that 12-year-old having what they think is a temper tantrum in the middle of the shop? Let me set it straight temper tantrums from a stubborn child are something very different from an autistic child’s meltdown due to too many sensory triggers. We took Logan to help with the weekly shop once as we walked around we felt tense we could feel something brewing but he wore his ear defenders around the isles up and down. It wasn’t until we reached the frozen isle the storm started to descend, he complained he was cold, and we thought we would give him the choice to pick out what type of chips he wants for dinner to distract from this. It didn’t take long for him to get himself in a mess and the overload of people made it worse for him by this time he had a downpour of tears running down his face and our trying to calm him down wasn’t having any effect. He started hitting my arm as I tried to hold his hand but after my failed attempts of help, he had curled into a fetal position on the floor and a full-blown storm had taken place. The shopping never happened that day and that was the last time we took him to a big shop. These breakdowns although difficult to deal with sometimes feel worse when they happened at home some nights he would kick and punch whatever was nearby and scream into what was neatly placed blue-cased pillows. Sometimes I could get near him and try and calm him but other times when I got close to him, he would scream at me to leave him alone with flailing arms and legs in my direction this could go on for hours and usually until he had screamed and kicked so much he would have exhausted himself and he could no longer keep his eyes open. These nights were scary they left me terrified for Logan I felt as if I had been swept up by the hurricane and was being taken further and further away as there was nothing I could do to calm him down, in a way I felt I had failed as a parent as what type of mum lets their son cry and scream themselves to sleep.
Don’t get me wrong it’s not all stress and meltdowns there are some moments everything is at peace the air is still and calm and I look at his face and a big smile is stretched from ear to ear. You never know when these moments are going to come but the innocent and happiness on his face were something you wish lasted forever. These moments can happen when you’re out in the street and he sees his favorite game in a shop window, or he sees a cat run across the street and he mimics the meow that it makes. Nights often came along when he is in a good mood and he wants to sit up on the sofa with me and cuddle. These nights are quite rare so when they happen I cherish them. He will sit with me while we watch the telly and I will tell him I love him, and a gust of emotions will blow over me. I feel special and I hope my son feels that too. Before he goes for his 8 pm bed curfew he will sometimes get a hot chocolate with marshmallows these are one of the few things he understands he doesn’t get every night so when he gets one he is more than happy. After this if it has been a good night He will shower, put on his pj’s and brush his teeth without my help and climb into bed with his blue covers pulled up to his chin. When I often tell people about how my days go I’m not looking for sympathy as many think. It is like a storm and it has it’s up and downs, but this is just how we live our life.
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