The letter I haven't yet sent

Dear former teachers, nurses, doctors, and friends we met while Grant lived in Baltimore,

I haven't been good about staying in touch. I rely heavily on a blog and Facebook page to communicate with everyone so... if you aren't there, I apologize for my silence. May 3 marked our 1 year anniversary home and I couldn't imagine a year later we would be quarantined together. However because we are, it's helping me clearly see where Grant has changed and some details that might surprise you.

The biggest one is food. When Grant was admitted in Fall of 2017 he was 100% dependent on his g-tube. It caused me great stress to imagine how feedings were going with you as they were hard for us at home. I grew more concerned as he lost weight in your care. I didn't feel that we were communicating well.Those days of feeding therapy were very hard, but still not as hard as the ones that led us to you.

However, it is with great pride that I can share Grant is eating all of his calories by mouth. There is no doubt that I owe the feeding therapists a great big thank you for taking those all those steps to get Grant over his feeding anxieties, catatonia or whatever it was that caused the great hunger strike.

Today he is eating all day long (if he's not on a swing or mowing the lawn). Raw veggies, fruits, chips, meats. No special Rifton seat. It doesn't take 2 people and he's improved greatly keeping it in his mouth. Lately we have even handed him a bowl and have space between us as he feeds himself. His behaviors when he came home last year went away immediately once he was allowed to sit with me on a bench. His ability to eat raw veg and fruits in a new and recent success. He almost is willing to anything and everything these days. It feels like a real miracle. I didn't know if he was ever going to get to a place where food was good and right again. Your team helped immensely. When we got home, we just went further than you were willing to go and he went up and beyond our expectations both at school and home.

As many of the CA's shared with me, Grant stopped screaming and crying every time there was a change of adults. I don't know if he went through an extinction burst or what exactly, but he can handle change and doesn't fuss or aggress on people because he accepts the change rather than fighting it.

Grant continues to get ECT weekly. Whether it's helpful or not is hard to tell because we are a bit concerned to change anything. The hospital here doesn't have the same flexibility in scheduling as they require for us to go to the OR. Many times when we are forced (from a sickness) to go to 2 weeks...he gets fussier, more self injurious and aggressive. Our gut tells us it's still helping. We have played with meds a little, but nothing has helped or changed much.

Unfortunately, Grant is still self-injurious. He no longer wears his "arms" and instead we keep his hands busy by holding large stuffed toys because they are soft. We got rid of the arm restraints shortly after he came home. They were awkward and not working in the summer heat. He has zero interest in going back in them. Unfortunately the "arms" taught him some new scary self injurious moves like slamming his head into his Ipad.

Speaking of, some days he isn't doing well. He has gotten hurt a few times. He remains clumsy and we are lucky that his accidents haven't been worse. There have been some trips to urgent care. There have been thoughts that helmets and "arms" need to go back on. As soon as we start to go there (in our minds, not in action), he improves.

We have been blessed to find a behavior company that helped us last summer and this school year. Until COVID 19 we have been able to have and find help even at times more than we really need.

Grant is 5 feet tall and 92 pounds. He still loves pop, mowing, and swinging (and his ipad). I think he likes being at home with mom/dad. There are a lot of people that love Grant here in Minnesota and he misses Zach, Papa Edgar, and Emma the most (or that is what he is able to articulate). I think there are many other people he loved and misses, but simply doesn't know their names. He asks to look at pictures of these 3 and I wish I had more photos of people he got to know out East.

We had to stop saying the word "school" because we thought it meant KKI. Now we know he just doesn't want to go to school. I don't know how he felt about his time there. I still hope he will continue to expand his language and that one day we will hold more meaningful conversations. Until then, the Carlson's are ok as we try to avoid this virus.

We are healthy, we are doing ok today, we are appreciative of the help of the feeding, behavioral team, and medical staff. Those were hard, hard days. It was a long time to not be a family together and our hearts go out to all that get to the pt that out-of-home treatment is the only answer. We thank you for all of the progress he made, especially with feeding therapy and letting us pursue ECT in safe environment.

We are grateful. Thank you,

The Carlson's