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.
10 comments:
Well said.
What a blessing to confirm (I suspect) what you already were feeling Jac. You are an amazing Mom and Grace is an amazing child. You and Abe love her (and Mack & Sophia) well. Don't underestimate that love.......it is the best therapy going for her although I know that has come at a great cost to you (physically, emotionally, financially, spiritually). I admire you Jac and am humbled by your dedication and love for Grace, Mack, and Sophia.
It is so hard to decide what is enough, too much or not enough. I struggle with these thoughts daily. I don't want to regret later on that we did not do enough for Elizabeth in her early years when her brain is developing so rapidly. Because of that we have spent all our savings/home renovations funds on therapy, we are still paying for last years sessions of CME Medek. I do not regret for one second the money we have spent, I do regret the loss of time, precious time where Elizabeth should be playing and learning.
It is a fine line on where to accept your childs abilities and limitations and where to push them to acheive more. I really try to give Elizabeth as many opportunities to develop her skills in the community we go to gymnastics, swimming and spend tons of time at the park I am trying to make activities less geared on one to one work which I feel causes her stress.
You have done so much for Grace and because of all that you have provided her she doing so well and as I see on your blog she is happy, loved and well adjusted.
I have a sister who has a disabilty and not for one moment did I ever begrudge her for getting extra attention and nor do I have what if thoughts about how things should have been.
Maybe a break from the intesive therapy would be nice and you can use that money/time on a trip away having fun as a family. Elizabeth is planning a trip to Florida in the new year you should join us, we as her parents just have find out how to pay for it.
Don't get me wrong...I don't regret anything we have done thus far. I am just regrouping.
Wise words.
No matter what choices you make with therapy, what really matters is that you love sweet Grace (which of course you do). Balancing and figuring out what is best after that will come naturally.
I often feel like I'm walking a tight rope between pushing Chloe (and myself) to work harder and achieve her highest potential, but at the sime time accepting her for who she is. It's not an easy task, but we have been entrusted and blessed to be the parents of these special kiddos, so we just do our best. That's all anyone (ourselves included) can ask!
Enjoying your blog. Good advice to consider for parents in any position. I had to comment because Grace looks stunning here! You can really see how much she has grown over the summer.
She sounds like a true (and wise) friend.
Awesome. She gave me goosebumps. Love her attitude and perspective.
Ben gets 2 PT sessions a week. That's it. In the past, he's also had OT and Speech but those have ended. I continue to investigate alternative therapies but feel similar to your friend. In the spring, we will likely do hippotherapy but that's it for us. I don't want his (and our) life consumed with therapy. I don't.
This post is hanging over me. I left, and then had to come back. I agree with this person, but then I don't. I do think that involving your child in regular activities is good, but we do a lot of therapy at my house. I think that really, I fill as much time as I'm comfortable with and then I stop. When Charlie starts school we will definitely be pulling back on therapy--kid time is good.
That being said, I love my ABR and have no intention of giving it up. No, it won't cure him, but it may help him to avoid orthopedic pain, which is extremely valuable to me.
Gosh, I could go on and on. . .
While looking for more information about the PERCS procedure, your blog came up. I've scrolled from the thoughts about Percs to now and am now in tears. So much to think about. What is enough? What is too little? What is the right thing to do? It's hard to feel as if I'm ever doing enough for him or his brothers. I have to remind myself that as long as he knows and feels loved by us, then everything else will fall in it's place as it should, right???? Uggg!
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