In April we had a 3 hour meeting to prepare Ainsley's IEP (Individualized Education Plan) for the coming year. You frequently hear parents say they had to fight their school district for services, or that they have difficulty coming to consensus about their child's IEP. Fortunately for us, I've never really experienced that. It is a tiresome process but I feel that the staff is willing to work with me to determine the goals we set for Ainsley. We came up with some good ideas that we've started to implement in many areas, but this post is just about the goal of independent walking.
As you can imagine it has been our goal, and the goal of every therapist and professional who has worked with Ainsley for the past 7 years, for her to walk independently. The biggest obstacle for her is standing balance. When she was 2 she just needed the littlest bit of support to stand. She got a walker right before she turned 3. She had hip surgery and was in a spica cast for many many months, TWICE! In 2007 and 2010. Although she's been using the walker for 4 years it has not lead to independent walking, but instead has taught her to rely on her arms for stability when she walks.
In January we stopped hippotherapy (horseback PT) because after giving it a year I didn't see enough of a change to warrant the high cost. She looked great on the horse, but still wasn't even standing let alone walking. She enjoyed it but at $460 a month it was too expensive as a "hobby". She transitioned to oral feeding in December and lost some weight. She was hit hard a few times during cold and flu season, as is typical for kids with trachs since it is exhausting to be sick, coughing and breathing through a tube. It's taken her awhile to rebuild strength. It's now time for a new plan as we head into summer.
Our first goal is to get her independently standing so we're incorporating as much standing into her school days as she can tolerate. We are also looking for easy ways to build standing into her nightly routine. After a long day at school and finishing her lunch (she eats too slowly to finish at school) she begs for a video. Since she is highly motivated by videos we are using that as enticement to stand. After considering a stander, I figured out a way to wedge her walker between the couch and play table (which is safe because it's filled with drawers of trains and blocks which are heavy). If she starts to fall forward she can grab the walker, if she starts to fall backward she can sit on the couch. I've enlisted the Evie's help. Evie wants IPod time, which I'm trying to reduce, so if she sits with Ainsley and makes sure she stays standing the whole time then she gets her IPod and it's a win, win for everyone. I can cook dinner. (I've found when you have a child with so many additional needs it really helps to build as much as you can into everyday activities that are relatively easy to incorporate.) Another benefit of this activity is that she can be in complete control of standing and do so safely. I'm trying to build her self confidence so that standing independently isn't a fear filled experience. She needs to be willing to take some risks and must trust her own abilities in order to feel safe enough to try. Here is video of her standing for a few seconds without support, using the new setup.
In two weeks we have an appointment with a foot specialist because Ainsley sometimes has foot pain at odd times (She is also having a echocardiogram tomorrow.) and we know she doesn't have good blood flow to her feet. We'll discuss changing orthotics, again. We've tried several types over the years. What you gain in stability you loose in range of motion (with the stronger orthotics, because the the ankle position is fixed - as in unmovable). AFO's have not been the answer in the past for Ainsley, but we are willing to give them another try since her orthotic insoles and shoes are getting too small and worn.
The components of our plan:
- Stretching to release tightness (caused by many months in spica casts, and the fact that she cannot stand)
- Strengthening exercises (we have a routine we squeeze in as often as possible since 2010)
- Increase weight bearing in standing, at school and at home
- Increase confidence by providing safe standing experiences
- Creating opportunities for her to use the walker to increase walking endurance (like taking her to the store for 40 minutes where she gets to buy something with her own money) This is highly motivating and fun to her and the store environment distracts her from the fact that she is tired. She still wanders off and requires a lot of redirection, so it's best to plan these outings when I don't have both the other kids or anything I really need to do on the trip.
- Teach her to safely use forearm crutches as a way to transition her away from the walker. Crutches would allow her to walk in spaces that a walker can't fit and require more balance and motor planning.
- Encouragement and Empowerment - For quite awhile now I've been telling Ainsley that the exercises we do will help her be able to stand and walk one day. It makes a difference to hear that I believe in her. When I ask if she will walk she says she will. She now believes it and that is motivating. Sometimes she will even do the exercises on her own.
When Ainsley was born the doctors cautioned us that "Ainsley will teach us about herself." In other words we really don't know what she'll be able to do until she has done it. It's difficult to determine how best to help your child when she/he cannot speak, because we don't get her feedback. I feel like I'm very "in tune" with Ainsley and my instinct has always been that she can and will walk independently someday. In fact that is why we went ahead and had her hip dysplasia surgically treated, so that she would be able to walk without pain. It's my goal that this year be the year that Ainsley walks independently. Honestly I don't know how realistic that is and I've thought she would years in the past. This year though, it feels like she is closer than ever.