As humans, we fear what we don’t know, and you may very well know someone who has a child with learning disabilities or needs extra care. However, we often pay little attention to the realities of that world. Maybe you’re a parent who learns to put off things you want to do in life to keep family life moving, there are many families with disabled children who make incredible sacrifices that stay invisible to everyone else.

What Families With Extra Care Responsibilities Want Everyone Else to Know 1

Here’s a few things that they would want you to know, and there’s also going to be plenty of advice for those who may be at the very beginning of their journey as a carer:

Rest Is Not the Same

Respite is the absolute saving grace of any parent or carer because we have to remember that for a child who has a profound learning disability, their needs extend way beyond what most parents would perceive on the outside to be normal. The best way to describe it is like the first two years of a child’s life, but all of the time! This is where home and community-based services (HCS) are integral to changing the whole rhythm of family life. HCS family services can give parents practical help and breathing room. This kind of support can make all the difference between coping and constantly falling behind.

Parents Do Not Want Sympathy

Sympathy is completely unhelpful. Sympathy implies that there is a situation right now that’s not easy to navigate, but it’s all about the long haul and recognizing that, actually, when we’re human, sympathy is such a hands-off emotion, and in fact, empathy is a far more important and impactful thing. When someone understands that actually we’ve not slept properly for days, and on top of this we’ve had to navigate appointments, we’ve got to make sure that we are always well enough, which can often mean neglecting our own health in the first place, that actually all we want is to have a very understanding conversation. Parents of children with learning disability or any additional needs can find themselves emotionally alone, and it really should not be like this!

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Siblings Are Affected As Well

Brothers and sisters of children with a learning disability have to learn patience, responsibility, and empathy really early on, but can also feel overlooked when so much family energy goes towards care. You may very well have heard of the term “glass child,” and this is the definition of a sibling in that position, but it doesn’t mean that they are glass because they are breakable; the definition actually comes from the fact that people see through them.

For parents, the thing that helps most is not offering advice that nobody has asked for, but actually making life easier in practical ways. Families with disabled children also want people to understand that joy and hardship can exist together. We often think that the perfect life is one without problems, when in fact the real meaning to life is about progress, which means that problems have to be in place, and yes, it can be very easy to define life by struggle, but families in this position are full of love, routines, and deep affection, even when daily life looks different from the norm.