I call this post the marathon, as opposed to the sprint, because you have to pace yourself to make it to the end. Providing for a special needs child is a long term commitment, even if you do not provide the direct care yourself. As a child with a severe developmental disability grows up, they change physically, but do not separate from you in the way that a normal child would. They still need care in many of the ways that a younger child would.
If you provide the care yourself, it can severely limit the pursuit of your own goals and interests and you can lose your sense of yourself in the desire to meet the needs of your child perfectly. If you allow others to provide the direct care, then you may worry if your child is safe or happy and if you are providing sufficient oversight to ensure the well being of your child. The challenge is to strike the balance between involvement to the point that it overwhelms your own life, and lack of sufficient involvement to be adequately assured that your child's needs are met.
Finding and maintaining that balance has been an ongoing goal for me. As parents, we have to remember that we have many roles in our lives besides our role as a parent. We are the children of our parents, we are siblings, we are friends, we are employees, we are neighbors and we have interests and passions apart from our children. We have to allow time for all of those roles if we are to maintain our own identity and not lose our perspective. Do you make time to eat well and exercise? Do you get enough sleep? Do you have a creative or spiritual outlet in your life? You must take care of yourself physically and mentally to be the best that you can be for your child in the long run. If you don't, you run the risk of caregiver burnout.
Every now and then I have read a tragic story in the paper of a murder/suicide committed by a parent of a special needs child. These parents drowned in the attempt to meet the needs of their child without sufficient supports and they drowned in the belief that if they could not personally meet the needs of their child, that no one would. It is that fear that we carry, "If not me, then who?" There is no doubt that guilt follows the decision, on occasion, to put our own needs first.
Do you suffer the same recriminations that I do? Do you think, " I should be more patient." "I should be more attentive." " I should put more time and effort into my child's care/program."
I make mistakes and disappoint myself sometimes, then I forgive myself and move forward. I know I will never do this perfectly and I don't even know what perfect would look like.
I do know that it is important to take breaks, have fun and relax, put your worries aside on a regular basis. This is how you recharge your batteries and come back to this task refreshed and ready to give your best.
To parents of special needs children of any age I say,"Be kind to yourselves and be forgiving of yourselves. Allow others to help you, even if they won't do the job the way that you would. If your child is safe, healthy and relatively happy, then it is okay."
