Since Esmé can’t tell us what she wants to dress up as for Halloween–and since she has rather stringent requirements for her costumes so that her sensory and physical needs can be met–every year I try to think about a person to dress Ez up as, someone that I feel fits Esmé’s personality and that somehow … Read More
The Farm
As I am sure those of you who follow this blog know, we have had some holes in our nursing care over the last few weeks/months. And it has been hard on all of us. Ezzy misses her former caregivers, and all of our schedules have been turned upside down. I feel as though we … Read More
On The Playground
A lot of parents worry about their children making friends on the playground. It is easy to call up images of our children being left out, to imagine them lonely and confused while the other kids play happily out of their reach. As the mother of a child who has developmental delay, it would make … Read More
Halloween
Once again, dear readers, I give you Esmé’s thoughts as communicated to me via mental telepathy. Hello TSCBlog readers, Ezzy here! I wanted to write to all of you about a very important topic. It is one regarding which we have received several questions. I have wanted to address these questions for some time, however, … Read More
We’re Growing
I was planning on writing this morning about how much Ez has grown. I had planned out a chipper blog post about the piles of pants I’ve begun pulling out of Esmé’s drawers because they no longer fit–some that had that fit her for over two years. I planned on telling all of you about … Read More
Esmé Writes to Yo Gabba Gabba
Esmé has asked me to relay the following complaint as an open letter to the producers of Yo Gabba Gabba, her favorite television show. I have written my own thoughts on the show–especially the episode Baby. But below I will do my best to interpret Esmé’s thoughts transmitted to me via cries, whines, a lot … Read More
A Guest Post: Early Intervention in Illinois
Today I am sharing a guest post written by my friend and colleague Ali Schmeder-Cummins. Ali is involved in the fight for Early Intervention programs in Illinois. For those of you who don’t know about Early Intervention (EI), it is a federally mandated and state-run program to offer services such as physical therapy, occupational therapy, speech … Read More
Our Caregivers
The last few months have been really difficult from a caretaker perspective. There have been a number of changes including the loss of two long-time nurses just over a month apart. Ezzy’s daytime non-nurse caregiver has also had to reduce her hours with the start of the school year. All of this has meant that … Read More
Who is this kid?
Does anyone know who this is, because I barely recognize her. It isn’t that she is standing at the window. She’s done that for some time now–especially when she is bored with me and hoping for a visiter to show up. It is her stance–her strong legs, her bent knees. Until recently Ez often hyperextended … Read More
Why we need to talk.
The pretty little girl on the playground looks back at me, “Why isn’t she talking?” She asks glancing back at Esmé–who is scooting around in her gait trainer, trailed by several other curious children. “Esmé doesn’t talk yet, but she understands you.” I say smiling back at her. “Oh,” She says, fully turning away from … Read More