10 Things for Parents to Know
1) You are not alone.
There may not be anyone else with the same constellation of symptoms as your child with cerebral palsy but there are people with similar challenges. Find those people.
2) You too deserve to be cared for.
We are placed in a position of caring for others nearly constantly. However, you still need and deserve to be cared for your child with cerebral palsy. If that entails asking friends or family to bring a meal by every now and then, or going for a pedicure, or a date night, or whatever else you enjoy doing.
3) You aren’t perfect–and that’s ok!
No one is perfect. We all make mistakes. We can wallow in our goof-ups or move on! Try to shift your thinking, maybe there was a good reason you missed that appointment that you were sure was on Tuesday but apparently was on Monday.
4) You are a super hero.
You may not leap buildings in a single bound or run faster than a speeding bullet but you are a super hero none the less. Everyday you manage situations that a regular parent would think are impossible. You stretch tight muscles, remember pills, inject and infuse medicine.
5) Therapy is play.
Having sat in on several therapy sessions, I have been frustrated by what I thought was premature discharge from therapy on more than one occasion. Since then I have grown, I have learned and I have come to understand. For children, therapy is play and play is therapy.
6) Play is therapy.
Yes this is different from number five. After discharge from therapy, we sought extra curricular activities for my son that would offer therapeutic benefits.
7) Make time to enjoy your kids
We super-parents tend to be fairly busy and often over-scheduled. However, while everything on your calendar is important, it’s also important to make time to play, laugh, be silly and just enjoy your kids.
8) You will be obligated to make heart wrenching decisions.
You will have to make painful decisions that hurt your heart and leave you questioning everything you thought you knew or understood. Know that you are doing your best – remember number three.
9) You won’t always get it right.
Many of the choices you are forced to make have no right answer, just the lesser of the hard and painful wrong choices. You will do your best but you won’t always get it right, no matter how many sleepless nights you spend agonising over how to handle a situation.
10) Forgive yourself.
Yes, you will screw things up sometimes despite the very best of intentions. No amount of torturing yourself will make you feel better, nor will it help you to make better choices. Remember many of the toughest decisions have no right answer.
11) Being a parent is hard. Being a parent to a child with extra needs is extra hard.
It can also be extra rewarding. Make us extra passionate. And will almost always make life extra interesting. With the challenges come the rewards. Sometimes you have to search your heart for the rewards but they are there if you look for them.
12) Parenting a child with extra needs is like a marathon.
For those folks who are trying to win a marathon, there are no breaks. If you want to stay in the race, you eat, drink and even pee while running. But our marathon will go on for the foreseeable future and beyond. So remember, you don’t need to win, just make it to the end