Additional needs parenting: finding the strength to keep going

Whether it’s digging a wheelchair out of the mud, stretching legs, teaching British Sign Language, calming fears, wiping away tears or running toward difficult situations rather than away from them, all of this takes determination, courage and persistence. Basically just boring, old-fashioned grit.

These are the attributes parents of children with additional needs develop by the sack load. They never give up, even when they feel like it. When they are sick, hurting, exhausted and discouraged, they persevere – they press on.

You may feel more ordinary than heroic most of the time, but please remember:

1. You are not alone
   There may not be anyone else with the same cluster of symptoms as your child but there are people with similar challenges. Find those people in support groups and on social media to remind yourself that you are not alone.
2. You too deserve to be cared for
   Parenting a child with additional needs can mean that we are constantly caring for others. However, you still need, and deserve, to be cared for. This could entail asking friends or family to provide a meal every now and then, getting your nails done or going out for a meal. Whatever you enjoy doing, whatever makes you feel special and taken care of, take the time to do it, you are worth it!
3. You aren’t perfect – and that’s OK
   No one is perfect. We all make mistakes. We can wallow in our mistakes, or we can move on. Try to reframe your thinking – maybe there was a good reason you missed that appointment that you were sure was on Tuesday but apparently was on Monday. Maybe your child had a tough day at school and just needed the night off. Who knows? But beating yourself up isn’t going to change the situation, so try to move on.
4. You can enjoy your child
   Parents of children with additional needs tend to be busy and time-poor. However, while everything on your calendar is important, it’s also important to make time to play, laugh, be silly and just enjoy your child. Read to them, snuggle with them, engage with them with what’s important in their world. Make memories together.
5. 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.
6. You are a great parent
   Your parenting is extra hard but 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.
7. You are important, you matter
   Don’t let being the parent of a child with additional needs create or reshape your identity – it is part of our identity but it shouldn’t be all of our identity. When you focus all of your life, all of your contacts, all of yourself around your child and their needs, who you are can get lost. Include things in your life that you enjoy doing.
8. You have got something to celebrate
   Brag about those accomplishments that might seem small to others but are huge for your child! Your child may learn many skills late, and some they may never master. A wiggled toe that couldn’t wiggle before, a word, a sentence, a smile, a hug, whatever that milestone may be, share it with those who love you and your child.
9. You can rise above the hard knocks
   It’s hard to hear from parents that their child, six months younger than yours, is walking when yours isn’t. It’s hard when you feel judged by strangers. Be patient – explain, teach and raise awareness among those who just don’t get it. Remember, every parent deserves the right to boast and their pride at their child’s accomplishments is not meant as a knock to yours.
10. You can trust your instincts
    You know your children best. Doctors, teachers and therapists are all fantastic resources, but if you don’t feel like you’re being heard or your child’s needs are being met, it’s reasonable to get a second opinion. Don’t be afraid to fight for your child and their needs. While the professionals are experts in their areas, you are the expert on your child.