Click here for Part 1
Life after diagnosis is challenging, interesting, painful and exciting. A mixture of all these plus many mini celebrations whenever Curly does or says something new that gives us hope that one day he will finally be able to sound and act ‘normal’.
Challenging but Exciting: Communications Skills and Language
We’ve come a long way over the last 12 months, all thanks to sessions involving speech therapy, psychology and occupational therapy. Today Curly is able to say many short phrases. But no real conversations yet. As mentioned before in Sorry, But Your Son Has Autism (Part 1) he is able to say things such as “Mummy, I… want… ice cream…please” but with pauses in between, just like we’re teaching him.
He copies but has now started to remember to use them at the right time without us prompting. Very rarely he forgets and starts to babble. We then prompt him with “Mummy, I…” and he finishes the sentence. Once in a while he would say his sentences without pause and we’ll congratulate him.
Coming to Terms with It All
DENIAL: As new parents we don’t know what we don’t know and we don’t see what’s right under our noses until someone from the outside points it out. First we get defensive. This is our baby they’re talking about. How cruel of them to think there’s something wrong with our baby! When we start to do research on the issue, we want to see all the argument against it so we can say “See? They can’t really tell if a toddler has autism, they are too young.”
CURIOSITY: Then we start questioning and go on to investigate a bit about autism and what signs the child is showing. We get in contact with specialists and go through the whole process to find out if our child has autism or not. They diagnose our child and announce it to us as easy as telling us that “Your laptop was dropped. We can try and fix it.”
BLAME: Then we start blaming ourselves and questioning if we have autism, too… or did something cause our child to have autism. For example – did he bump his head when he was a baby? Did we feed him something his brain didn’t agree with? All the silly but freaky things we can think of at the time we’ll think about and consider them as reasons why our child is like this.
ACCEPTANCE: We agree to take things as they are. Our child has autism, fine, let’s deal with it. Might as well start early and get them the best services as possible. Acceptance is also when we need to agree that we will not see our child as an alien. This is our child, we love them no matter what. They are unable to be ‘normal’ but they don’t deserve to be treated as an alien. So at the very start we need to accept this. We will need to be their protector when the rest of the world attacks their abilities and their differences.
Painful Phases: Tantrums and Frustration
With Curly we had more tantrums at the very beginning than we do now. Through his sessions with the specialist he’s been taught to control his emotions a bit more, to pause and think before he reacts and to recognise that other people are able to soothe him, calm him down and protect him when he’s in pain. Here are some examples of what we went through:
CROWDS/NOISES: There used to be days when we couldn’t eat out at restaurants because Curly wouldn’t sit still. He would always chuck a fit. We noticed that he did better in smaller crowds. So we began taking him to smaller and less crowded places first, and gradually changed where we were going as he got used to the idea of being in crowds.
LOST IN SPACE: I don’t think there was anything more scary than watching my son get lost in his own world. Sometimes I feared he would never come out of it, that he could accidently get stuck in there. My son never rocked back and forth, scream, or flap his hands like some autistic kids do. But he did, for a whole year almost, spend a lot of time on his own as if we did not exist unless he wanted cuddles.
TOO MUCH ENERGY: We used to think “Oh wow he’s full of beans. He’s able to do more than many kids do,” such as go on the big kids slides on his own when he was 2 years old, monkey bars without support at 3 years old, and run around the football field without getting out of breath. Until we were told that we need to reign him in and teach him to calm down. The Scientist would sometimes beg me to take over the running because he was tired already. That’s how much energy my son has. He is now able to stop and regroup if we call out to him. Before, he used to be in his own world and didn’t hear a word we were saying.
HIS WAY OR NO WAY: Curly had to be taught a little extra how to share and how to be patient. If we were driving the same route as the route to the in-laws’ house and then make a sudden turn to go somewhere else, he would throw a tantrum… every time. Eventually, through therapy sessions, he was introduced to ‘changes’ and we started to see improvement in his reaction when we changed certain routines.
FRUSTRATION: Curly had trouble figuring out why some things were not happening, no matter how much he tried to put effort into his actions. Such as when trying to twist open the cap off the milk carton, putting his books back onto the shelves, squeezing out toothpaste or putting his pants on. He would get impatient, frustrated and then angry. Today, Curly gives it a go and if it doesn’t work he comes to us and asks for help.
So life is much better today than it was last month and the months before. We’re slowly improving and discovering new ways to help our son.
Next time… Learning to breathe, taking things slowly and the support we get from family.
Are you a parent with a child who has autism? How have you managed to move forward with their development? Would you like to share your tips with us?