You're waiting for a call back about an appointment, trying to remember whether you sent the latest report to school, and your child wants you to come and see what they've made. You sit down beside them for a minute. Then your phone rings.
Parenting a child with disability can involve a lot of work that other people rarely see. There are appointments to organise, decisions to make and conversations where you find yourself explaining, again, what helps your child. You can be proud of how well you know your child and tired of having to explain their needs. Both can be true on an ordinary Tuesday.
You don't need a diagnosis to be here. Many parents are on a waiting list, or have only just started to wonder whether something is different for their child. The same things can apply.
In this post, we look at school, behaviour at home, time for what your child enjoys, and getting help that takes something off your plate.
When school is hard for your child
Some days your child is upset before you've even left home. Other days the school calls because your child has run from the classroom, hit someone or become too distressed to return to an activity. When the calls come often, you may find yourself checking your phone throughout the workday, wondering whether you'll need to leave early again.
It can help to ask the school to talk you through one recent incident.
• What was happening just before?
• Was your child moving between activities, waiting in a crowded space or trying to ask for something?
• What did staff notice, what did they try, and what seemed to help?
Ask about a time the same activity went well, too. Your child may have had more warning, a familiar person nearby or a quieter place to wait.
What you know about your child helps the school make sense of what staff are seeing. You could say, "At home, when she pushes something away, she often needs a pause. Have you noticed when she does that at school?" If your child uses pictures, gestures or a communication device, ask how they can access it during the harder parts of the day and how staff respond when they use it.
If your child is a teenager, you might say, "He's told me the corridor between classes is the worst part of his day. Can we look at what would make that part easier?" Older children often have a clear view of what is hard, and the school may not have asked them.
If you keep leaving meetings with a list of incidents and little idea what happens next, ask for something concrete:
"Can we agree on what staff will try before the next transition, how my child can ask for a break, and when we'll check whether it's helping?"
When behaviour is hard to understand at home
Some children come home needing quiet. Others are hungry, uncomfortable or frustrated and find it hard to show you what's wrong. Your child might shout, throw something or push you away when you're trying to help. It can be upsetting, especially when you're tired too.
When things are calmer, think about one part of the day you know well. Perhaps your child is asked a string of questions the moment they walk in the door. You could give them time to settle, then offer a snack or some company in a way they can respond to. Notice what they show you. They might bring you something, move closer, or use a gesture or device to say they've had enough.
If you're worried someone could get hurt, raise it directly with the school or the professionals supporting your child, and ask for help making a plan.
Make room for what your child enjoys
When so many conversations focus on assessments, incidents and support needs, it can be a relief to spend time doing something your child has chosen. They might want you to watch the same funny clip again, join them outside or sit beside them while they draw. Let that time be theirs.
It's also worth telling the school what your child looks forward to, how they show you they're comfortable and what helps them connect with someone new. Those details give staff a place to start when they're getting to know your child.
Ask for help that takes something off your plate
People often say, "Let me know if there's anything I can do." When you're already keeping track of so much, working out what to ask for can feel like another job.
Pick one thing someone could take responsibility for. You could ask your partner to organise the next appointment, a family member to bring dinner on a meeting night, or the school to nominate one person you can contact about the agreed plan. You can also ask someone to sit with you while you talk about how the week has been.
There's room to talk about how you're going
You may be worried about whether your child feels welcome at school, frustrated that you keep having the same conversation, or unsure what to ask for next. It's hard to find space for those feelings when there's another email to answer or another meeting to prepare for.
At Looking Up, we can help you think through what's happening, prepare for a school meeting, or find words for what you want people to understand about your child. We can also make time to talk about how this is affecting you and what would make the next week a little easier.
If your child has an NDIS plan, counselling for you is separate from the supports funded for your child. What can be funded depends on your child's plan and the NDIS rules that apply, so if you're unsure, check with your child's NDIS contact or support coordinator.
If you'd like to talk it through, you're welcome to start with a free 15-minute phone call.
