Extra reading: Planning ahead
It does not have to be the Paralympics
Not everybody needs - or will get - a medal. But special needs children work as hard - or harder, at their age - as athletes to reach the next milestones.
To do all this work just to be "normal" is a tough, tough exercise - for you as well as for the child.
I have worked with athletes. What pushes them usually on is a dream. This gives them the stamina to push on through the hard patches. Dreams are a great source ot strength.
So what dream can you find for your children?
The goals in therapy often differ. For a child, the next milestone is often not that important - it often cannot know what it will feel like to be able to accomplish it and does not necessarily miss not being able to perform a function. Do we miss not being able to do a summersault? At the same time, being able to roll onto the side by itself might not be very rewarding. The reward is: feeling well and being able to grab a toy.
Here are the goals I define for some of my children:
- First and foremost, be without pain, vertigo, or lack of breath. My first "milestone" is a smile.
- Being able to change positions enough to make yourself comfortable. This also enables children to stay longer on their own.
- Enjoying food.
- Playing. This could be anything, even just pushing a toy forward and back - it just has to be rewarding for the child and give the impression that they can interfere and influence their environment.
- Some movements are happening by chance if the child is ready for it, and prove useful afterward (like the first sitting).
- All movement after that has an intention: getting to toy on the sofa, taking a toy from the sister, reaching out for that cookie.
Getting a child involved in the work is like creating a dream for an athlete. It helps us to push on when it gets difficult. Before we perform any movement, we have to be able to imagine it (this is the core of coordination, it happens before the movement). Getting this imagination active and alive is an incredibly rich source of support for any therapy. Some of my little clients insist on showing up in ballet dresses for our lessons. Even if they cannot walk (yet), I can use that idea to dance with their arms and improve their function in balance. This makes the hard work interesting and rewarding for the child. It creates a great learning atmosphere. Try ice skating with your child, if it wants to, even if it is not able to walk yet - it will enjoy the speed and learn something valuable neither of you was thinking about.
Sometimes the parents need a dream as well. If there is much work ahead, it makes sense to look back. Maybe take videos from time to time, to be able to see what you already accomplished. Take one step at a time. See how much you achieved, even if it is not a classical milestone. But make sure you never limit yourself too much. The ultimate goal is not normal. It is happiness.
If you are getting up more than five times every night, or carrying a heavy child for years, or loving a child that isn`t able to show its love to you, cooking special meals every day, please give yourself a medal. You really are my heroes.