World Autism Awareness Week started this week. This condition is well and truly present in our lives. It has not been the end of the world, nor a curse. It has certainly made things a little more challenging, but it has made us see life differently.
Around 3 years ago, our eldest son was diagnosed with Autism Spectrum Disorder (ASD). It is called a spectrum because the level and variation in behaviours, abilities and difficulties can change from person to person.
We knew there was something about him unlike other children, and when it was first hinted that he may be on the spectrum, we processed it and started reading more about it to try to understand what the condition meant. We agreed that it was very likely that he was.
A diagnosis helped us understand more about it, about how it affected our child and also a chance to make sure he receives the right kind of support at school. At the end of the day, you want to do what’s best for your child so that he is happy, safe and accessing the education he deserves and support from specialists.
Now, it’s been two months since we received an ASD diagnosis for the second time. It turns out our second son, Lucas, is also autistic. Nothing new there or unexpected. We knew the chances of him being on the spectrum as well were high, because his older brother had the condition. We talked about it and agreed the chance was there. Obviously, you don’t assume it would be the case, but the possibility was there in the back of our minds.
Lucas has always been such a happy little soul. He was a happy and content baby, everything was a breeze with him. He is the epitome of joy, he has the biggest smile all the time. His happiness and excitement are contagious, he makes people smile wherever he goes. That’s precious.
What made us go back to the possibility of him being on the spectrum was that, around the time he turned 2, he was showing a speech delay. There weren’t any other issues that made us wonder, though. Many of the things we saw in Antony at that age were not in Lucas (Apart from the speech delay that Antony also had and now he is a chatterbox who is never quiet hehe) Lucas always had good eye contact and liked playing with us. However, every autistic child is different. We knew he had a speech delay, but it didn’t necessarily mean being on the spectrum.
After he turned 3, however, he started developing certain repetitive and sensory behaviours we knew too well: Alphabet and number love, non-stop jumping, flapping when excited, lining things up, echolalia, he would hold his little face with both hands and sort of squeeze it, and he would grab our hands to do that to him. After that, we were basically sure he was also on the spectrum, and the paediatrician agreed.
This time around, we live in a different part of the country than when Antony had his diagnosis. We have had support from the community speech and language therapist since we started the process of getting him assessed. Thanks to a drop-in clinic service they have, I took Lucas shortly after his second birthday, and the therapist has been involved in his progress and diagnosis. Given that we were in the middle of a pandemic, any appointment was held virtually, and she helped us with strategies and resources to help Lucas with his speech. For example, she encouraged the use of alternative means of communication through symbols and visual aids. She guided us on how to create a communication board where Lucas could tell us what he wanted to eat, to play or to watch on TV. He quickly got the idea and soon enough he was asking ‘Quiero …..’ or ‘I want….’. He can ask for the things he wants now very well. He would use his board sometimes, but a lot of the time he manages to ask or say things by himself. Of course he needs some time to process the information, but he gets there. It also helps to visualize daily routines.
Despite his communication difficulties, Lucas has been identified as hyperlexic, which means he can read far beyond what is expected for his age. Of course he may not always understand what he reads; he would spend long periods of time reading the credits at the end of a film and there are some very technical words there! He spends a lot of time reading books by himself, but he would still bring books to us to read to him. He is doing so well, and I am sure his communication skills will blossom now that he started preschool.
We are lucky to have two extremely bright little boys. Their development hasn’t been like that of a neurotypical child. Both of them have behaviours or habits that many neurotypical children their age have stopped doing. However, in their case, some aspects of their development is ahead of children their age. Antony’s math skills are amazing and well beyond a 7 year old, and Lucas can read and has been counting to 100 for a while already and is now trying to count in 2s. Both have extremely good memories. Antony loves geography, too. He can tell you about capitals, flags and completely random railway station information.
We are still using two languages at home. However, I would sometimes use English with them, especially Antony, as he struggles to communicate in Spanish at times – it is a difficult language!- when he is anxious or upset. I know they say you should stick to using your mother tongue when raising bilingual children, but I simply cannot make things more difficult for him in a moment like that. It isn’t any kind of crazy spanglish, I make sure of that! They still use Spanish with me most of the time, though, and I am happy and proud they do. ‘Why don’t you quit speaking Spanish?’ you might think….I can’t. It is part of them now and our home, I want them to be proud of their heritage. Even if their bilingual skills never get to be very fluent, they will know enough to make themselves understood.
They make our lives full of joy, fun, worry and sleep deprivation. They have different personalities, of course, but both are energetic, clever, happy, sweet and funny. They tend to sleep through the night, but often Lucas would wake up in the middle of the night and start singing the ABC song very loudly or reciting a book and that would wake Antony, or Antony would wake up and get noisy, and so Lucas ends up waking up…such fun! Lucas has a lot in his head at the moment, so sometimes it takes him a while to “switch off” and fall asleep, too.
You never plan to have a child with special needs, let alone two, but you are grateful for the children you are given and embrace the opportunity of raising them up and also learning from them along the way. Raising children is not easy I know, but raising children with special needs has extra challenges that sometimes people can’t quite understand. Sometimes people don’t realise how hard and frustrating it is seeing your autistic child struggling to communicate, to understand you or the world around, or gets defiant, or finds it hard to deal with his emotions, or when he gets anxious because his routine is broken or because they can’t control the weather, the train being late or any subtle change. We try to adapt our life to their needs but we are also trying to bring them up in a way that helps them learn to cope with whatever they struggle with. We don’t know what the future holds, that worries me. All I know is that I want them to be happy and proud of themselves, because we are so damn proud of them. We want them to be loved and cherished and valued.
If you managed to read this far, I thank you for taking the time. When I write about our children, their achievements and their struggles, it is not to have your pity or anything like that, because having children with special needs is nothing to be pitied for. My aim is for you to have an idea of what raising children on the spectrum is like, so you can help spread awareness and understanding. My children are only one example of this condition, though. This is our story. Other families may go through worse situations or less challenging than ours. Parenting children on the spectrum is like going hiking….with some tricky, dark, rocky and scary paths, but also with lots of joyous walks, with flowers of every colour under a blue sky.