BLOG: Parenting two special needs children during lockdown
This blog is presented as part of the SEND Parenting series on Teach Liverpool, and has been written by Natalia Figueroa Castilla.
Two years ago, I separated from my children’s father and became the main carer for my two children, who are both neurodiverse. I became a single parent overnight. Three years later, my life changed overnight again; the night lockdown was announced on March 23rd. From this point onwards, I no longer felt like a single parent. Let me explain.
About the time that COVID-19 became a global pandemic, I became engaged to my fiancé. However, we still have our own homes and, for the medium term, we decided to ‘live together apart’… Meaning we have a lot of sleep overs! Cue lockdown, and this all changed. We immediately decided to share one house, fearing that the lockdown would separate us for too long. This is the part where I no longer felt like a single parent.
That’s how it felt like for me, but imagine how it felt for my fiancé. One minute you’re a bachelor with a great career and a house all to yourself. The next minute you fall in love with a lady who has two kids and you’re all living in one house! Plus, you still have to work 9-5 from home, and be on endless back-to-back conference calls. All this while your fiancé’s non verbal autistic child is running around the house, screaming at the top of his voice and using you as a human climbing frame. Let me tell you, this man is my hero! I don’t know how he has coped with it all but he has.
The day after lockdown was announced, I remember going through my Facebook groups, all with parents who have special needs children. They were freaking out because obviously this meant keeping our children indoors, becoming teachers, changing routines and everything wrong you can think of in between. No one had any idea how this was going to play out, and the guidelines weren’t clear at the time.
But in my head I was thinking: ‘this is a piece of cake, we’ve been doing it for a week and half already’. Right before the lockdown, we went into isolation because I had developed moderate COVID 19 symptoms. Now, in my head I foolishly thought this was going to be a walk in the park. I had already dealt with two kids at home while feeling horrible, running out of breath going up the stairs with aches all over my body and having a fever. Boy was I wrong!
When the announcement was made I had a huge list in my head of all the things I was going to accomplish during lockdown: paint the house, teach Angel how to read, set a routine and follow it strictly, do gardening, arts and crafts with the children, engage with and teach Kalel (my youngest son) Makaton, work out, meditate, lose weight, cook, clear cupboards, move furniture, and the list goes on and on and on!
Let me walk you through our first week: Angel (my eldest son) was the happiest boy alive in the world. Lockdown meant NO SCHOOL! I remember him watching the news and seeing Italy’s lockdown with no schools being open, and asking: “Why can’t we move to Italy so we can be in lockdown?”.
Angel is 9 years old and he is Dyslexic, ADHD and currently under the ASD pathway for possible autism and suspected Dyspraxia. He was born in Italy and he knows this, but his awareness of space, distance, and time is somewhat challenged. So, clearly he had no practical understanding of what he was saying when proposing to move to Italy.
However, when the lockdown came into effect here, he was relieved. It meant no more school, no more expectations, no more feeling inadequate. Angel struggles with writing, reading, social interaction and communication. Although he is an extrovert, he has never felt accepted by other children and he still thinks he has no friends. This moment was a moment of relief and he was loving it.
My five year old, Kalel, on the other hand had no clue what was going on. He couldn’t understand why we weren’t going out, why McDonalds was closed, why he couldn’t go to school and why we couldn’t go to the swings in the park. Kalel has no idea what is happening in the world. His understanding is of a toddler, he has no speech and he communicates his needs by either doing it himself or grabbing your hand and taking you to what he wants. This tends deteriorate into self harming when you are giving him the wrong item, or doing the wrong thing.
When Kalel started school, he had a difficult time. He was almost expelled because of biting children and staff. But we were able to get him nice and balanced with a lot of effort from myself and the school. He settled down and started to love going to school. There were no more problems getting him into his uniform, dropping him off, and sometimes we even had problems picking him up because he wanted to stay!
Needless to say staying at home and not going out was a major set back for Kalel. He loves the outdoors and this was now the one thing we had to scale back. We had a big problem! So, naturally we opened up the garden and started having beautiful days outside again. I also implemented a routine, printed it off, laminated it, and created visual aids so the children knew what had to be done. The routine was perfect, but without realising it at the time, I was quickly becoming overwhelmed by it all. A few weeks down the line and the routine proved to be a complete failure.
Don’t get me wrong, the first two weeks of the routine were great! Angel was spending 2-3 hrs a day doing homework, watching documentaries, electronic use was timed and limited. But Angel can’t work independently, he needs me to sit down with him to help him read instructions, write down sentences and read out colours.
This meant zero engagement with Kalel. Kalel’s sensory circuit routine was off the wall. I couldn’t teach him Makaton while working with Angel. Our home is small, and the TV room is the same space as the dining room. So doing homework with Angel meant having Paw Patrol on in the background while Kalel jumped up and down on the sofa. Without Paw Patrol, there was no chance of keeping Kalel distracted enough to get anything done with Angel. But at the same time Paw Patrol was distracting for Angel. There was no perfect solution. Saying that, there are always the bedrooms. But Kalel won’t use his bedroom during the day. In Kalel’s mind everything has a distinct purpose and cannot be mixed; the bedroom is for sleeping, downstairs is for watching TV and playing.
So, Angel was doing great with the routine, but Kalel wasn’t and the guilt haunted me; I wasn’t doing enough, I wasn’t applying myself enough, I needed to get through my to-do list and I wasn’t, I needed to spend more time with Kalel, go through his therapy, do bucket time, sensory time, Makaton, pecs, etc. But I also needed to teach Angel. I wasn’t finding a balance and I felt so guilty about it.
By the third week, I switched it up and started doing more things with Kalel, and Angel went in decline. He started spending more time isolating, immersed in his Nintendo Switch and SMART phone, becoming more depressed as the days went by, stating how much he hated the coronavirus, asking everyday if there was a cure, asking when he could go to his dad’s. He was really frustrated, and the sweetest boy I knew was becoming angrier and losing patience with his younger brother.
Kalel on the other hand started to calm down, his sensory levels were almost back to normal, and he was enjoying doing other activities but always led by me. So I started neglecting Angel’s educational and wellbeing because I felt guilty about neglecting Kalel. I felt like the worst mother ever. How can a mother not be able to follow a routine and meet each child’s needs without a problem?
You see, while social media can be the best tool to help your children and help yourself, it can also be the worst tool for your confidence and your mental health. I felt that I needed to be the so called ‘Pinterest Mom’ and “Pinterest Fiancé”. I HAD to be able to teach, clean, work on my to-do list, manage my children’s mental health and physical health, be able to cook healthy meals, be a good partner to my fiancé, spend quality time with him, be there for him when he had a stressful day and maintain noise levels so he could work. By the end of the day I was exhausted! I couldn’t sleep, I couldn’t rest, the days were getting harder and harder, and my stress levels were off the richter scale!
I was so determined to take care of everything and everyone else’s needs that I completely forgot about myself. I always had the to-do list at the fore front of my mind! But I wasn’t thinking about having a bath after the kids went to bed, or cooking something just for me. I felt guilty when I had a piece of cake, because in my to-do list there was the losing weight part. I felt guilty about having a bath or reading a book, because I had to clean the house, mop the floors or get things ready for the next day.
During the third week of lockdown, I joined LivPaC virtual coffee meetings. I already knew Tracy from The Isabella Trust because I had attended so many of her workshops. The beginning of our autism journey was with her, so I thought to myself: ‘there is a familiar face’. I have to say it was the best decision I have ever made. I involved myself in every meeting I could attend. I got answers to so many of my questions. But more importantly, I started to build friendships and make connections. I started to listen to other parents with the same issues and worries. I started to share my struggles and not feel judged.
Not only was I putting the children under lots of unnecessary pressure, but I was also putting myself through hell, and this was affecting my mental health, my mood and my energy. By the fifth week of lockdown I ditched the routine table, but kept a routine based on the children’s needs. I dedicated more time to myself and more quality time with the children rather than keeping a strict routine.
We started doing more life skills lessons at home. Angel can now run a washing cycle, clean dishes and set the dryer. He vacuums around the house and helps with Kalel. Kalel helps me cook, clean up in the kitchen and the living room. I am modelling words for him and doing more sensory activities. I started sewing things like weighted lap pads, body socks, compression bedsheets and I’m currently in the process of making a weighted blanket.
It is better, but it’s not perfect. But here’s the thing; it’ll never be perfect, and that’s okay. I came to realise I am only human; one person dealing with two children with special needs.
Lockdown meant a change in the outside world, but the biggest impact was in our little world at home. The main goal is to keep them safe and happy, to monitor their mental health and in between that find as many learning opportunities for them as possible.
Us autism parents are used to struggles and fights. We have to fight every day for our children’s mental health, medical assistance, benefits, schooling, and their personal rights. We fight at home to maintain normality and adjust that normality when it needs adjusting. We fight off the disapproving looks at restaurants, cinemas, parks and supermarkets. The fight never ends, and it never will. Only the parents that care enough know this and can relate to my words.
It is unknown when the lockdown will end, but I am sure that the priority of the government and society won’t be our children or their special needs. It will be the economy and business. Our lives are anything but normal, and we know that now more than ever as we fight for recognition of our children’s needs. I’m ready for it. I know we’re ALL ready for it, because NO ONE fights more for special needs children than their parents.
Let’s see what the next few weeks and months will bring, and how things evolve. It’s an overloaded adventure, but I wouldn’t change it for the world.