2017 has gotten off to a rocky start. On February 16th, my dad and my kid's "papa" was killed on his motorcycle. He was wearing all of the right gear, was going the speed limit or under and was on his side of the road. The oncoming driver was in a Dodge Ram, was driving on a suspended license, was on his phone, was distracted and was on the wrong side of the road. He hit my dad head-on just before noon on a beautiful day, when my dad was headed out for a long ride in the sunshine. All of our lives turned on a dime and nothing has been the same since. The boys still ask for their Papa whenever anyone comes to our front door or they see his car in our garage or they see a picture of him or even a picture of a horse or a cowboy. Our lives have been turned upside down and we still haven't regained our footing.
But then there are the people who were the light of my dad's life, and are still the light in ours...
Torsten has now been in the PPCD (Preschool Program for Children with Disabilities) for nearly one year. He has done amazingly well and has made great strides in both curriculum and therapy. He's walking a little more steadily, has started coloring, knows his letters and a few numbers, is starting to recognize some emotions in others and has started putting a few words together. For over four years, I've asked him about his day, with no response or acknowledgement that I'd even asked him a question. Yesterday was the first time that I asked him "how was school today?", and got a full response. He rambled several sentences of Torsten-speak that, although I couldn't understand, sounded amazing and was the first attempt that we'd ever seen him make at anything conversational. Although this may seem minor for a 4.5 year old, it's HUGE in our house.
We spent the last couple of months going through the process of having Torsten evaluated for ASD (Autism Spectrum Disorder). Although this diagnosis seemed obvious to us and wasn't expected to change our course, we believed that it could make it easier for those outside of our home to understand how they could best work with and help him. The evaluation was lengthy, but it was comprehensive and extremely helpful in the end. Torsten was diagnosed as autistic, and because of it, they have made a few changes to his therapy schedule and behavior goals. It just helps to paint a better overall picture of his needs, as well as the best way forward for him at school and in therapy.
Last fall, we had some tests run on Torsten's bladder function, and had his sacral dimple and spinal cord re-checked. We've had some issues with infections in the dimple area, and have noticed some indications that his cord could have re-tethered. His bladder results showed issues, and the MRI confirmed that his spinal cord had re-tethered since his last spinal de-tethering surgery in 2013. Although the neurosurgeon suggested that we schedule surgery last fall, I asked that we wait another six months and check for improvement before operating on our boy again. We're now nearly at the six month mark and have again run into issues. Torsten is still not fully potty training, is extremely stiff when walking, falls regularly and now also has a very infected and bleeding sacral dimple. We're working on controlling the infection, but the general surgeon has requested to see Torsten again asap. He will likely be operating on/cutting out T's dimple during the same operation where the neurosurgeon will de-tether/cut his spinal cord. We'd like to prevent Torsten from having multiple operations if we can help it. We're hoping to get everything scheduled early this summer, to give T plenty of recovery time before school starts in the fall.
We're also researching Torsten's best options for school next fall, since we are not in favor of the direction that the district has decided to send him. We're planning to request a transfer, and if that fails, we'll move on to other options. We still have a few months to make a decision, but would like to have our options on the table before the end of this school year. Regardless of the direction we decide to go with the public school system, we plan to keep Torsten at his private pre-K/Kindergarten. They have been absolutely wonderful to him and us, and even if it's just after school care, it's a wonderfully positive environment and Torsten loves his friends and the staff.
Beyond Torsten's health and schooling, he's such an absolute joy. Now that he's beginning to appropriately react to his sibling's emotions, the dynamic in our household is shifting. Torsten now acknowledges that sadness and crying is not a reason to hit or laugh at them, and even brings them their lovey if they're upset. Although he doesn't actively play with any children, his siblings included, he plays in parallel to them. Even though he's starting to show empathy, he's spent the past couple of years torturing Dane, stealing his toys and doing everything possible to annoy him. Now that Dane has grown up a bit and is stronger, he can better hold his own and gives it back to Torsten in spades. Dane now speaks in full sentences, has an interesting sense of humor and is already learning the art of charm. As for Mila, our "little" girl has also proven that she needs no one to protect her, is fully capable of standing up for herself, and regularly beats the tar out of her big brothers. She's a tough little cookie and I couldn't be more proud of my smiley, chunky-cheeked tomboy.
Our little family is so perfectly imperfect and I'm grateful for each member everyday. Our hearts have recently been broken in a way that they'll never fully recover from, but slowly we're finding one thing at a time to smile about.
Love from our family to yours.
But then there are the people who were the light of my dad's life, and are still the light in ours...
Torsten has now been in the PPCD (Preschool Program for Children with Disabilities) for nearly one year. He has done amazingly well and has made great strides in both curriculum and therapy. He's walking a little more steadily, has started coloring, knows his letters and a few numbers, is starting to recognize some emotions in others and has started putting a few words together. For over four years, I've asked him about his day, with no response or acknowledgement that I'd even asked him a question. Yesterday was the first time that I asked him "how was school today?", and got a full response. He rambled several sentences of Torsten-speak that, although I couldn't understand, sounded amazing and was the first attempt that we'd ever seen him make at anything conversational. Although this may seem minor for a 4.5 year old, it's HUGE in our house.
We spent the last couple of months going through the process of having Torsten evaluated for ASD (Autism Spectrum Disorder). Although this diagnosis seemed obvious to us and wasn't expected to change our course, we believed that it could make it easier for those outside of our home to understand how they could best work with and help him. The evaluation was lengthy, but it was comprehensive and extremely helpful in the end. Torsten was diagnosed as autistic, and because of it, they have made a few changes to his therapy schedule and behavior goals. It just helps to paint a better overall picture of his needs, as well as the best way forward for him at school and in therapy.
Last fall, we had some tests run on Torsten's bladder function, and had his sacral dimple and spinal cord re-checked. We've had some issues with infections in the dimple area, and have noticed some indications that his cord could have re-tethered. His bladder results showed issues, and the MRI confirmed that his spinal cord had re-tethered since his last spinal de-tethering surgery in 2013. Although the neurosurgeon suggested that we schedule surgery last fall, I asked that we wait another six months and check for improvement before operating on our boy again. We're now nearly at the six month mark and have again run into issues. Torsten is still not fully potty training, is extremely stiff when walking, falls regularly and now also has a very infected and bleeding sacral dimple. We're working on controlling the infection, but the general surgeon has requested to see Torsten again asap. He will likely be operating on/cutting out T's dimple during the same operation where the neurosurgeon will de-tether/cut his spinal cord. We'd like to prevent Torsten from having multiple operations if we can help it. We're hoping to get everything scheduled early this summer, to give T plenty of recovery time before school starts in the fall.
We're also researching Torsten's best options for school next fall, since we are not in favor of the direction that the district has decided to send him. We're planning to request a transfer, and if that fails, we'll move on to other options. We still have a few months to make a decision, but would like to have our options on the table before the end of this school year. Regardless of the direction we decide to go with the public school system, we plan to keep Torsten at his private pre-K/Kindergarten. They have been absolutely wonderful to him and us, and even if it's just after school care, it's a wonderfully positive environment and Torsten loves his friends and the staff.
Beyond Torsten's health and schooling, he's such an absolute joy. Now that he's beginning to appropriately react to his sibling's emotions, the dynamic in our household is shifting. Torsten now acknowledges that sadness and crying is not a reason to hit or laugh at them, and even brings them their lovey if they're upset. Although he doesn't actively play with any children, his siblings included, he plays in parallel to them. Even though he's starting to show empathy, he's spent the past couple of years torturing Dane, stealing his toys and doing everything possible to annoy him. Now that Dane has grown up a bit and is stronger, he can better hold his own and gives it back to Torsten in spades. Dane now speaks in full sentences, has an interesting sense of humor and is already learning the art of charm. As for Mila, our "little" girl has also proven that she needs no one to protect her, is fully capable of standing up for herself, and regularly beats the tar out of her big brothers. She's a tough little cookie and I couldn't be more proud of my smiley, chunky-cheeked tomboy.
Our little family is so perfectly imperfect and I'm grateful for each member everyday. Our hearts have recently been broken in a way that they'll never fully recover from, but slowly we're finding one thing at a time to smile about.
Love from our family to yours.
Dad with the kids - January 29, 2017
Family vacation to Colorado - April 2017
Torsten - March 20, 2017
Dane - March 20, 2017
Mila - March 20, 2017
Thinking of you and your beautiful family often. Wish we were closer for babysitting and in-person hugs. Keep us posted on T's surgery. xx
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