We haven't done it all, but we have done a lot. Grace has done occupational therapy, physical therapy, hippotherapy, osteopathic manipulative therapy, conductive education, PERCS, pilates, yoga. We've spent lots of money on AFOs, orthopedic shoes, standers, walkers, special benches and seats and other equipment. We've traveled, gone into debt, and as ashamed as I am to admit it, we have ignored our other children's needs. I've even felt guilty that we haven't done other things, such as hyperbaric therapy, ABR, etc...very expensive therapies. I feel like I am in the tornado looking for the wizard that can solve our problems...or what I think are our problems...Grace's CP.
I received an email a few weeks ago from another mother. A mother with a child that has special needs. A mother I have not met, but have corresponded with via email. She is amazing and I follow her blog and often her advice. I cry with her and I rejoice with our children's accomplishments.
With her permission, I have taken excerpts from her message to me (her word in italics).
...But I wonder.... Is all of the therapy really helping make Grace the best she can be? If it is, than you should continue to pursue it aggressively, as you are. But in my own situation, I feel like therapy is overrated. I have felt in the past like maybe I am not doing enough, but at the end of the day I just decided that my goal will be to help my child have as fulfilling and happy a life as she can...and I just don't think all the therapy really enriches her life that much.
We do therapy twice a week. Once it's traditional PT at home with a private therapist, and once it's hippotherapy. Both are paid for through our health insurance. We have never paid out of pocket for any therapies. To be completely honest, part of that is because I am a skeptic by nature, and I really wonder how much any of those therapies work in the long run. I do believe that a lot of them make noticeable difference in the short term, but when my child is an adult will they really have done any good? I don't want to spend all of her college money pursuing therapies that are not going to help her when she is an adult.
I also don't want therapy to cut into my child's time to just be a normal kid. I looked into other therapies, but both would require such a huge time commitment, in addition to the money, that I didn't feel it would be fair to my child or the rest of my family, especially not knowing what the outcome would be. The bottom line is that my child (and Grace) will always haveCerebral Palsy. It's not going away, and all the therapy in the world will not make her "normal" to the rest of the world.
I'm sure that I will always have some level of doubt over whether I did enough...but I think at the end of the day I know I AM doing enough. We try to incorporate therapy into our lives in an unobtrusive way, and balance it with trying to include my child in every activity that we do in the best and easiest way that we can.
Anyway, I really hope that you will not be offended or feel like I am trying to tell you in any way what YOU should be doing. But I do want you to know that you have already done SO MUCH for your children and it's okay if you take a step back and take a break from all the therapy. I have used the money that we are NOT spending on therapy to take fun family vacations, for dance class, and swimming, and saving for college and any equipment that might enhance our lives along the way. It's okay to do that. It's okay to spend your money on having fun as a family. And it might even have more of an impact on Grace's life in the long run.
The email continues with encouragement and support and ends with the following...
And it's okay if you need to take a step back and regroup. Take a break from ALL therapy if you want! It really will be OK!
As long as Grace has a loving family who treat her with kindness and respect, she will be okay. And she clearly has that:)
Thank you dear friend for taking the time to send this to me. I so value your perspective and appreciate the thoughts. It has permitted me to take the time and regroup and just enjoy my child as she is. I love you and hope I will one day get the opportunity to meet you.