Ten things I wish I’d known before I had my sensational daughter

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One day, you might have a child with special needs. If you do, it will be difficult extremely difficult, but you will survive.

If you have a child with special needs, you might want to know:

  1. Your relationship with your partner will change – for the worse and for the better. Some days you will feel disconnected from, angry with, and resentful of your partner. Some days you will feel like the luckiest person in the world and know deep in your core that there isn’t another soul on the planet you’d like to struggle next to.
  2. When you discover your child has special needs, some of the reactions of the people around you will disappoint you. Cut them a bit of slack – nobody is trained in how to respond to these types of situations… and no matter how much you both might wish, they will never fully understand what life with a little one with special needs is like, unless they also have had this experience. Some of these people won’t even recognize that they don’t understand, but very rarely are they trying to be hurtful.
  3. The response of other people around you will be the exact kind of comfort and understanding you are looking for. Allow yourself to be vulnerable enough to let these people in. They will be the strength you need when you have none of your own strength left.
  4. Look for some soft places to land, in unusual places. I have found a lot of comfort in a colleague whom I have only known for three months, whose 17-year-old daughter has had similar struggles to Maddy her entire life. I imagine it’s only fate that we ended up with desks next to one another when our organization moved buildings last month.
  5. If you try really, really hard, you will manage to find a bright spot, even on the darkest of days. Sometimes the bright spot will be as small as enjoying a cup of tea in silence, or a surprise phone call/email from a friend.
  6. Sometimes you will let yourself down and you won’t be the parent you want to be. Keep striving to be that parent.
  7. Understand that you can’t “fix” anything. Your child is who they are, no matter what you wish or how hard you work on therapy techniques. The best you can do is guide and support your child. Aim to do this while simultaneously nurturing your relationship with your partner and taking care of yourself. Don’t be too hard on yourself when you’re struggling to find this balance.
  8. Find what is special about your child other than their special needs. Look for their unique characteristics and quirks. Celebrate them often. If you find this difficult to do, don’t be too hard on yourself.
  9. Know that sometimes your child is going to do something that makes your day – even if there are long periods where you both struggle between these good moments. Think of these often and allow yourself to smile. Even better, videotape these moments and watch them at the end of a tough day.

And finally, number ten: Be kind to yourself. You’re doing the best you can.

 

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2 responses »

  1. Pingback: It is hard, and it hurts « sewrite

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