The fact that SMA does not affect an individual's intelligence or cognition fills us with such gratitude. Ella is bright. She's funny. She's there.
She interacts with Ava and Henry, she finds humor in situations, she plays make-believe. She knows what she likes and what she doesn't like. She is aware of her environment and all it has to offer.
She is also becoming aware of her condition.
Lately Ella has been asking to do things that she physically cannot do. She wants to stand. She wants to walk. She wants to run. She wants to jump...
...by herself.
She has been more contemplative lately when she sees others doing these things and it's sometimes hard to know exactly what she's thinking.
Lindsay and I sat at her Early Intervention meeting this week and among many other goals set for her by the team was a goal for social-emotional therapy.
Our thought is that Ella might benefit from a therapy that can help her address her anxieties, fears, wants, and physical development.
Our thought is to equip ourselves with strategies to use to help her overcome any feelings that may bring her spirits down.
Our thought is that while SMA causes limitations in what she can do physically we need to continue to find ways to show her that there are others ways to accomplish the same goal; that there are alternate avenues she can use.
Our thought is now that she is understanding language more we need to have good communication skills and common language with her to be able to help her.
Our thought is that there needs to be a strong trust between her and us so that she can tell us exactly what she is feeling as she gets older.
We're looking forward to the many goals that have been set by the Early Intervention Team. They have done wonderful work with Ella and us this past year.
We're looking forward to increasing her independence, introducing more food by mouth, getting her standing for longer periods of time, among other goals.
And now, we will begin the journey into her pysche to help her as much as we can as she continues to live with Spinal Muscular Atrophy Type 2.
