I guess you could say I have few expectations for the hopes of my child. They’re not going to be the same, day to day or week to week, let alone year to year or decade to decade. Right now, at this very moment in time, the only hope that I have is that she can learn to understand and control her emotions.
You see, it’s a Saturday at lunchtime, and we already feel like we’ve been dragged 20 miles through the hot desert with no shoes, water or sun cream. We are exhausted to the point that I just said I wanted to go to sleep so I wouldn’t hear anyone anymore. We’ve had multiple violent outbursts and meltdowns and we need a break, even though we only just paid for a few hours respite last night.
I guess I would categorize my hopes for my child into short- and long-term hopes, just like the way you would fill out and set targets for an IEP, SAP or EHCP. Breaking down the long-term hopes into smaller parts makes the hopes reachable. Additionally, you won’t be disappointed in the long run if those hopes aren’t achieved.
When you parent a child with autism, your hopes are somewhat different than parents of children with no additional needs and disabilities. Your hopes aren’t the sort that define your future, or even the usual hopes of having a well-paying job, a nice house, the perfect illusion of 2-4 children. Instead, they’re things like: “I hope my child has friends, and can socialize appropriately.”
I am going to list three long-term hopes for my child, along with shorter-term hopes. You’ll see how, in time, these hopes will become the future. My long-term hopes will look like those of a “normal” family’s hopes and dreams for the children they are bringing up. However, when you check out my shorter-term hopes, they will help you understand that it’s going to be a long slog helping my children to reach the hopes that come so naturally to any typical family.
- Long-Term Hope: Independence.
Shorter-Term Hope: For Lola to be able to recognize and regulate her own senses.
To access things like parties, cinema, ice skating, and socializing with friends, Lola needs to be able to recognize when she is becoming overwhelmed with the world around her. She then needs to be able to self-regulate these emotions and senses so that she doesn’t bubble over and become a danger to herself and those around her.
- Long-Term Hope: Friendship.
Shorter-Term Hope: To be able to understand other people’s thoughts and feelings, and interpret them into clear social rules. Lola cannot sustain friendships in the way that normal children can. She doesn’t understand the unwritten rules of social communication and gets confused easily, thus making it difficult for her to be able to play appropriately and enjoy games and other children’s company.
- Long-Term Hope: Communication (because communication is the key to Hope Nos. 1 and 2!).
Shorter-Term Hope: Communication is a tricky one: It ranges from understanding emotions and how you feel, to being taught how to express those emotions properly, and thus being able to communicate emotions. It also interlinks with my hope for friendship, being able to have reciprocal conversations and understanding when it’s appropriate to talk, how to express your language and how to interpret others’ thoughts, feelings, tones and facial expressions.
Making sense of the world around you is very important for communication. The world is a very confusing place for people with autism, and having too much information to process can be very overstimulating, which may lead to a breakdown in the regulation of senses. Lola will need to be taught all of these things, little by little and step by step. She will need repetitive teaching and over-learning in order to gain these skills that come naturally to you and me.
These three things are my main hopes for Lola at the moment.
I’m not hoping for a well-paid job, finding love, having children and getting married. Right now I don’t care about her travelling the world and seeing new and exciting things, or for Lola to be successful in a career or sail through school with straight As.
Of course, I would love for Lola to achieve these things. I would love for Lola to one day be able to settle down and have a family of her own and a good career, but those things aren’t important to me at the moment. Right now, what is important to me—and above anything else in the world—is that I hope Lola is happy.