People often ask how many times a day I work with Meagan... or what her therapy schedule is like at home...etc. Well the honest answer is... I don't know, and she doesn't have one. Not that she doesn't go to appointments, therapy sessions, school, etc... but she's also not a robot. She's a person - her own little person, and we decided long ago we weren't going to schedule out her life from working on one thing to the next. And I'm also a mom to four other girls and run a household - so logically and realistically, I cannot dedicate every waking hour at home to making Meagan work at something. Some days, do I help her practice her walking, or other things she needs to work on? Absolutely. Of course. Is it everyday? No. Is it every week? No. There has to be a balance. She's a kid - and kids love playtime and freetime. Her sisters love their playtime and freetime. Megs should get that too. But I have noticed an exception.
With Meagan passing the 3 1/2 mark, we have seen changes in her that prompt a bit of frustration. In certain cognitive areas, she's almost on par, but in physical, adaptive, and other cognitive areas, she's quite behind - so she's starting to reach a point where she's almost "fighting" herself. In some ways it's good - because that is what gives her the drive and determination she needs. In other ways, it's not because she is more aware of what she wants to do - but realizing she just can't. During this transition in Meagn, I have also seen he girls ever so slightly change their approach with her. Instead of doing everything for her, they are almost prompting her to try things herself. This isn't always successful of course - they know Meagan's limitations - however what I love seeing is that the older girls never ever tell Meagan about her limitations. If she truly cannot do something, and is expressing frustration, I have watched the older girls distract her with compliments while they do something just enough where Meagan can finish the job.
I saw Kaitlin one night in the kitchen helping Meagan remove her shoes. Meagan so badly wanted to take off her socks on her own, but her hands just aren't strong enough or coordinated enough to do so. As I watched, I was really impressed how Kaitlin kept asking if she was allowed to help (respecting Meagan's will to be independent), and then helped in small bits so Meagan had a sense of accomplishment. After the shoes and socks were off, Meagan even wanted to put her AFO's in the shoe cabinet (where the girls store their shoes), just like her sisters.
Over the last few months, with Meagan staying out of the hospital, and starting to thrive at school, I have really enjoyed watching the girls find creative ways to help Meagan feel as though she's also growing up - becoming a big girl - and starting to have a little independence. We were leaving the PSR office one day at our parish (religious ed classes), and I was holding Meagan since we just had to run in for a second. When we got in the hallway from the sidewalk, Meagan looked at me and said "I scoot. I do it." She wanted to scoot on the floor. I hesitated at first, but, then went ahead and put her on the floor to let her go along with us - her way. She was happy as a clam scooting down to the office, and as we left, she was perfectly content scooting along the floor with her big sister as we headed toward the exit. It might not be the "norm," but this is how Meagan is feeling some independence.
It has been clear to us from the beginning that Meagan's big sisters were valuable in her life - always loving on her, giving her attention, and yes, spoiling her. But what I didn't anticipate was the ways they would also help her grow. The ways that although she may be behind in things, they still treat her like she's a big girl. The methods they are able to create to make her feel like she's not a baby anymore and that she really can grow too, even if at a different rate than her peers.
I will never forget at a preschool function a child came up and asked Maura about her baby sister. Maura very matter of factly said "She's not a baby. She's almost 4." I have seen this attitude in all of my girls as they continue to live day to day with Meagan. They still love on her, they still give her all the attention in the world, and they still spoil her ..... but I have also noticed they are doing these things diferently now than when she was a baby. I appreciate that in them because sometimes that is one of the biggest challenges of being out and about with Megs - matching people's approach to her with her age rather than her size and abilities.
I'm sure we will have lots of typical sibling rivalry in our home - especially as we are entering these pre-teen years with some of the older girls. And there will always be the "normal" push and pull of personalities, opinions, and stubborness. But I have a feeling that a different rivalry will keep them all focused and bring them back together each time - the rivalry I have seen develop over the last several months to help Meagan realize the feeling of independence. That competitive spirit the girls have - not against each other, but held in unity for Meagan. That will power that she will do more, even if it's just a little bit of a little something a little at a time. And that fight each and every one of my older girls holds inside to help Meagan realize there's always more, if she wants it. With that kind of sibling rivalry, I know Meagan will feel the most independence and joy possible - and she will have one heck of a team by her side seeing it through.