When you have a child with multiple challenges it's easy to wonder if the decisions you make are the right ones. And as Mom, I put a lot of pressure on myself to keep up with the various therapies, nutrition, equipment, etc. Since we are living in the information age you can pretty much bet that if you name it, there is information about it and Goggle is ready to provide various links to learn more about it.
Because we all want the best for our children, we often try and leave no stone unturned when it comes to knowing what is available to our children. We usually know more options out there than our doctors because we've forged a network with other parents across the nation and the world to learn more about what we can do to help our child achieve their desires. I say their desires because I've found that - overwhelmingly! - us parents are taking the lead from our children on what they want to do. For example, Emma is totally into moving these days and by gosh we are going to do everything possible to help her realize her goal of easier, quicker movement.
What is hard, though, is deciding which path to take to help them achieve their goals and staying the course. Because it's easy to find success stories about most of the therapy and equipment options, it's easy to second guess your treatment decision if your child isn't making as many gains as quickly as you hoped.
Emma is amazing us with how much she is moving and doing other new things recently. She is getting so quick at commando crawling, sitting with minimal assistance on good days, walking at home in her gait trainer, sometimes vocalizing Yeah when she wants something, opening her hands more and attempting to cross midline with her hands more often, sometimes playing independently with her toys, demonstrating her understanding of some new concepts like same and different in addition to just identifying objects by name. This amazing progress happened within the last year, and most of it within the last 6 months. To say that Chris and I are thrilled to see all her hard work paying off would be an understatement. To say that Emma has worked tirelessly (of course she has had an incredible amount of fun and adventure in her short life, too!) to get to this point would also be an understatement.
So, what is the point of this post? I'll get to that, but first I have to tell you about a little guy that Emma has known for the last 2 years. He was born very early and had a lot of challenges. He was further behind on his milestones than Emma when they started out at PT together, but that didn't matter and the become fast friends. He had very similar intervention to Emma. His treatment was at the same hospital with many of the same therapists and the same equipment. But today he is not as delayed in his milestones. We were happy to see him the other day walking with a walker (not a gait trainer, but the kind like the elderly use) and talking to everyone, blowing kisses and generally looking amazing! It was so nice to see how good he is doing - he seems close to catching up with his adjusted age!
Running into this little guy started me thinking. The results of intervention with him and Emma are very different. If we did not know him and that he had the same intervention as Emma, I might have asked what type of therapy he had and consider trying it for Emma. I might have wondered if Emma could have achieved her goals quicker if she had the same intervention as this little guy. And I would not have known that the intervention was essentially the same as Emma but with a varied outcome.
I also think that if we had changed Emma's treatment in the last 6 months and started seeing all the great things she is doing now we might have attributed it to the change in treatment instead of that all her hard work and intervention to date is paying off for her.
While I don't think I will stop wondering if Emma would benefit from other treatments, it's more concrete for me that there is a big benefit in deciding the best course of action and then staying the course. I also believe that we should adjust the course if it isn't right for our child, doesn't fit into our lifestyle, or is otherwise detracting from Emma's ability to experience life as a little girl instead of a patient. Because, truly, life for little girls should be about play dates, fun at the park, day trips to the beach, squealing with delight from amusement park rides, playing with dolls and dressing up as a princess, and lazy days around the house. And not all about therapy or doctor appointments if they can be helped.
I feel like this post is wandering a bit because what is so clear in my mind is so hard for me to put into words. But, what I guess it comes down to is that I'm glad our encounter with the little guy happened because it made me more aware of my wonderings and helped me to put them into better perspective.
***Note: When selecting photos for this post I noticed that I have very few photos of Emma in therapy sessions but I have loads of her out and about enjoying life. I'm taking that as a sign that we actually are giving her a pretty "normal" childhood. And that I need to take a few photos of her in therapy so I can go back to them someday when I'm looking to remember when.....