Not as bad as it could've been..otherwise known as better than expected
Thank you all for your prayers as Jamesey and I traveled to Philly for his annual evaluations. The morning started off with a little rascal who didn't want to leave his covers behind for the cold, dark world that is a PA fall. I found it somewhat amusing that this - one of the few mornings we really needed to get moving - was the morning he chose to stay in bed...but I get it. He's not much for breakfast right out of the gate, so we hopped in the car (after my glasses had a close call as the fists of Jamesey closed around them in protest of the quick exit into the cold). We had an uneventful drive, enjoyed the leaves changing color and better still there was a gorgeous sunrise to enjoy. So let me lead off with the thankful points to frame the day.
- We had a sunrise that was stunning.
- Our barista was exceptionally friendly and made a phenomenal vanilla latte (yummmm)
- Traffic was minimal and aside from one slightly nutso New Yorker all drivers were sane.
- Our appointment was at the King of Prussia facility (rather than the main hospital). Essentially cuts an hour and a half off the drive time because well, Philly traffic.
Jamesey's CI Team has been comprised of quite a few people. Some we know very well and interact with frequently and others not so much. On the team is Audiology, Speech, Deaf/Hard of Hearing Educator, ENT Surgeon, a Social Worker and a Service Coordinator. Today we were meeting with Speech and Audiology. First up was Speech. We've worked with two outstanding providers for Speech and this time we were meeting with Miss Kristin as Miss Michelle is out on maternity leave. Kristin has always been extremely willing to adapt her assessments with him (which I appreciate). As I tried to put his CI's on him we hit a wall in minute 5 (picture fighting an octopus holding a baby octopus in each tentacle with each of them holding another octopus in their tentacles and do the math about how many waving appendages I was navigating around). He wasn't having any part of his CI's this morning and immediately that stunning sunrise disappeared and all I felt over the appointment was grey sky. The nasty voices started up in my head telling me that I was being judged as a parenting failure and that I was a parenting failure. That it was my lack of effort that was resulting in my child's inability to participate willingly. I'm thankful for Kristin's response when I expressed my frustration that this wasn't working. She very graciously encouraged me saying "I can see how hard you're both working, let's talk about some options and let him settle down a bit." It really was the kindest thing she could have said. So out of Speech here are some suggestions (and people, if you have provider recommendations to fill any of these roles, please message me and share them). In her opinion the two most essential elements would be addressing the behavior of not wearing the CI's (why doesn't he want to wear them? Is it in protest? Is it actually painful for him? Can we give him tools to make it more comfortable - think coping mechanisms) and the second being addressing the growing need for clarity in communication. Right now we're making due with him guiding us to what he wants/needs but as he develops more independence (and so that he can become more independent, so that he can be safe and so that he can engage more) he will require broader abilities to communicate. She is encouraging us to start working with a Behavior Therapist with him and likened it to a child who would benefit from glasses refusing to wear them. There are techniques that can be employed to assist Jamesey with his CI's and to work with us as we help him navigate all things life.
Her other recommendations involve working more diligently with the Picture Exchange Communication System (PECS). He's been showing some growth with it at school in conjunction with spoken word and sign. So PECS is this phenomenal concept created by a husband and wife team out of Delaware (they actually run a number of trainings in the Philly area and I'm hopeful that Jer and I can go to a future one). Essentially, there is a board or a book of pictures that represents significant items or actions for Jamesey. Think Goldfish crackers, his blanket, a sippy cup and a book-let's keep this simple. So if James wants a snack of goldfish (yes, we eat overly processed foods here. Have you tasted goldfish - they're magical) he would take the picture of the goldfish off of the board and hand it to the teacher/parent and then we reinforce it "Goldfish? You want a snack of goldfish? You gave me the goldfish. Let's find goldfish" essentially helping to build a vocabulary while also giving him an avenue for communication. This is a super simplified explanation and I know many, many of you have more experience with PECS and could explain it better but I hope you got the gist of it. It's a pretty exciting system and we're optimistic, but there are some steep learning curves to keep navigating.
So that was that with Speech - seriously, Kristin was amazing. I would have been completely undone had it not been for her compassion. She probably spent more time talking strategies than she did with his assessment but I appreciated that she could see that he wasn't engaging.
After that came hearing with Carmen. Checking the processors themselves went quickly and without too much resistance. Jamesey only tried to let himself out of the Hearing lab once - lol. And we figured out a few next steps. Things we're going to try -- only wearing one CI at a time (maybe two is too overwhelming), not using the pilots cap and the headband to keep them on his head, instead attaching them to a tether on his shirt that will be at his back, and then as a last resort there is a CI system called the Kanso that has no cables at all -- but that's a last resort. Carmen was encouraging, insightful and resourceful. I appreciate her wisdom so much! As a result, tomorrow starts more fun with our sweet octopus (hmm - maybe I need octopus earrings - they're pretty cute too).
The drive home went well, no naps for tired little man but we made it safe and sound. Somehow alongside the sense of relief after leaving these appointments it always feels like I'm fleeing the hospital as quickly as I can...interesting, but that's a thought for another day. One other starfish/Jamesey connection for you. Starfish are known for their regenerative abilities when they lose a limb. In a similar vein, when people lack one sense, they often compensate for it. I see that often with Jamesey - he has outstanding vision. On a lighter and fluffier note (just like Momma's biscuits) I saw a few requests for Momma's Baking Powder biscuits. I'll share those with you when we meet again, but for now, I'll say goodnight. I'm spent and the rascals are asleep. From the deepest parts of my heart, thank you for covering us in prayer.
* Side note, a few of you have expressed interest in basic ASL. Here's your word for the day. This is the ASL sign for goodnight. It's a combination of two signs (good and night).
- We had a sunrise that was stunning.
- Our barista was exceptionally friendly and made a phenomenal vanilla latte (yummmm)
- Traffic was minimal and aside from one slightly nutso New Yorker all drivers were sane.
- Our appointment was at the King of Prussia facility (rather than the main hospital). Essentially cuts an hour and a half off the drive time because well, Philly traffic.
Jamesey's CI Team has been comprised of quite a few people. Some we know very well and interact with frequently and others not so much. On the team is Audiology, Speech, Deaf/Hard of Hearing Educator, ENT Surgeon, a Social Worker and a Service Coordinator. Today we were meeting with Speech and Audiology. First up was Speech. We've worked with two outstanding providers for Speech and this time we were meeting with Miss Kristin as Miss Michelle is out on maternity leave. Kristin has always been extremely willing to adapt her assessments with him (which I appreciate). As I tried to put his CI's on him we hit a wall in minute 5 (picture fighting an octopus holding a baby octopus in each tentacle with each of them holding another octopus in their tentacles and do the math about how many waving appendages I was navigating around). He wasn't having any part of his CI's this morning and immediately that stunning sunrise disappeared and all I felt over the appointment was grey sky. The nasty voices started up in my head telling me that I was being judged as a parenting failure and that I was a parenting failure. That it was my lack of effort that was resulting in my child's inability to participate willingly. I'm thankful for Kristin's response when I expressed my frustration that this wasn't working. She very graciously encouraged me saying "I can see how hard you're both working, let's talk about some options and let him settle down a bit." It really was the kindest thing she could have said. So out of Speech here are some suggestions (and people, if you have provider recommendations to fill any of these roles, please message me and share them). In her opinion the two most essential elements would be addressing the behavior of not wearing the CI's (why doesn't he want to wear them? Is it in protest? Is it actually painful for him? Can we give him tools to make it more comfortable - think coping mechanisms) and the second being addressing the growing need for clarity in communication. Right now we're making due with him guiding us to what he wants/needs but as he develops more independence (and so that he can become more independent, so that he can be safe and so that he can engage more) he will require broader abilities to communicate. She is encouraging us to start working with a Behavior Therapist with him and likened it to a child who would benefit from glasses refusing to wear them. There are techniques that can be employed to assist Jamesey with his CI's and to work with us as we help him navigate all things life.
Her other recommendations involve working more diligently with the Picture Exchange Communication System (PECS). He's been showing some growth with it at school in conjunction with spoken word and sign. So PECS is this phenomenal concept created by a husband and wife team out of Delaware (they actually run a number of trainings in the Philly area and I'm hopeful that Jer and I can go to a future one). Essentially, there is a board or a book of pictures that represents significant items or actions for Jamesey. Think Goldfish crackers, his blanket, a sippy cup and a book-let's keep this simple. So if James wants a snack of goldfish (yes, we eat overly processed foods here. Have you tasted goldfish - they're magical) he would take the picture of the goldfish off of the board and hand it to the teacher/parent and then we reinforce it "Goldfish? You want a snack of goldfish? You gave me the goldfish. Let's find goldfish" essentially helping to build a vocabulary while also giving him an avenue for communication. This is a super simplified explanation and I know many, many of you have more experience with PECS and could explain it better but I hope you got the gist of it. It's a pretty exciting system and we're optimistic, but there are some steep learning curves to keep navigating.
So that was that with Speech - seriously, Kristin was amazing. I would have been completely undone had it not been for her compassion. She probably spent more time talking strategies than she did with his assessment but I appreciated that she could see that he wasn't engaging.
After that came hearing with Carmen. Checking the processors themselves went quickly and without too much resistance. Jamesey only tried to let himself out of the Hearing lab once - lol. And we figured out a few next steps. Things we're going to try -- only wearing one CI at a time (maybe two is too overwhelming), not using the pilots cap and the headband to keep them on his head, instead attaching them to a tether on his shirt that will be at his back, and then as a last resort there is a CI system called the Kanso that has no cables at all -- but that's a last resort. Carmen was encouraging, insightful and resourceful. I appreciate her wisdom so much! As a result, tomorrow starts more fun with our sweet octopus (hmm - maybe I need octopus earrings - they're pretty cute too).
The drive home went well, no naps for tired little man but we made it safe and sound. Somehow alongside the sense of relief after leaving these appointments it always feels like I'm fleeing the hospital as quickly as I can...interesting, but that's a thought for another day. One other starfish/Jamesey connection for you. Starfish are known for their regenerative abilities when they lose a limb. In a similar vein, when people lack one sense, they often compensate for it. I see that often with Jamesey - he has outstanding vision. On a lighter and fluffier note (just like Momma's biscuits) I saw a few requests for Momma's Baking Powder biscuits. I'll share those with you when we meet again, but for now, I'll say goodnight. I'm spent and the rascals are asleep. From the deepest parts of my heart, thank you for covering us in prayer.
* Side note, a few of you have expressed interest in basic ASL. Here's your word for the day. This is the ASL sign for goodnight. It's a combination of two signs (good and night).
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