Hello, dear readers! It has been awhile since I posted. I am not entirely sure where the rest of summer went! School has started, so I’d like to share some updates:
- Insurance: We remain at the last level of appeal. Any decision made by the independent, outside organization is binding on Cigna–whether they pay up or deny it. We should have a decision this month. Stay tuned.
- IEP: Now that Eli is 3, he aged out of the infant-toddler program and was deemed eligible to receive services through the public school system. His evaluation was hard for this mommy to read. In addition to the obvious communication problems, he also has some cognitive and social-emotional delays. When we had the IEP team meeting, I was pleasantly surprised at how much they worked with us to insure he received the most help. This year, is going to his same preschool (regular preschool, not a special ed one that was offered but was only 2 hours a day…not really workable for us), but every day a special education teacher comes to work just with him for 45 minutes. She is wonderful and is helping him with transitions by making a picture schedule of the preschool day, learning to sit at circle time (also with a picture of him sitting), and of course, the communication piece. He also has a speech therapist who comes to see him at school once a week for 30 minutes. The kids all love Eli’s “traveling teacher” and try to play with both of them. Eli’s teachers have known our family for years and are eager to learn and help. This is all in addition to the private speech we are doing.
- Private speech: Eli is going three mornings a week to private therapy for 30 minutes. We switched therapists this year, mostly because of scheduling, but I had heard about our new therapist from a special ed advocate, and she is awesome! She has immense patience for Eli’s antics when he doesn’t want to cooperate and utilizes PROMPT, Kaufman, and many other techniques to work with him.
- Family: Eli’s sister started kindergarten. Eli’s Nonnie and Papa (my parents) moved about 20 minutes away this summer! They have been a huge help with the logistics of the kids in different places at different times. Eli loves giving Papa kisses and being silly with Nonnie.
Now that updates are out of the way, fall also means something important for us: The Triangle Walk for Apraxia. This was our first year participating, as last year, we didn’t even know what apraxia was. The walk was held in a huge park downtown, and I think about 200 people came out. Team Eli set a (low) fundraising goal, and we blew it out of the water. I was humbled by all of the support from family, friends and colleagues. In total, our team raised well over $1000 for CASANA. We were the third-highest fundraising team. Not bad for our first walk! We wore our team Eli shirts (though sister refused because it is not “beautiful”).
We had ten members on our team. Our wonderful neighbors brought both their kids, who are the same age as ours. The walk was a great event. Eli (and all the kids with apraxia) got a medal, there was a magician, goody bags and certificates for all kids, lunch, facepainting…and of course, it was nice to see old and new faces. For me, the best part was talking to parents and older kids who have “beaten” apraxia. We know one family who has been incredibly helpful–their son had apraxia and is now in college. He has worked at Eli’s preschool and Eli adores him. Not only is it so nice that the families with older kids come back for the walk every year, but they helped give me hope that there is a light when I often feel the grind of therapy, see little progress and want to give up.
Here is Eli with his medal:
Next year, I hope to get more involved with the planning of the walk. #teameli #takethatapraxia