This is a letter that is long overdue, mostly because we weren’t quite sure exactly who to write it to. Should we write it to Melanie White? No, she knows how much we appreciate how hard she worked with us to help our son. Should we write it to our son’s BCBA? No. She also has been told time and time again about how much we appreciate her efforts, hard work and how much growth we’ve seen with our son’s development in his time at The Uncommon Thread.
So finally, we decided that the real person who needs to see this letter is you, the parent with a child diagnosed “on the spectrum”. The reason this letter is for you is because in September of 2014, we were exactly where you are now. Earlier in 2014 our son Johnny, was diagnosed as being on the autism spectrum. Johnny had been getting early intervention services for a few months and was progressing (somewhat) but still was way behind where he should have been in his growth and development. Even though we knew he had “issues”, we were still devastated when we got the official word that he was diagnosed on the autism spectrum. We didn’t know what to think, what it meant and most importantly ….. what to do! Would he ever be able to care for himself? Would he ever speak? Would he ever be aware of the world around him? Johnny has a brother that’s 2 years older than him, who thinks the world of his “baby brudder Johnny” and (at the time) Johnny barely knew his brother existed. We were confused, petrified and angry and we didn’t know what to do.
Then we were encouraged to look at this “special” school called “The Uncommon Thread”. We came to the school with our New York attitudes ready to pick the place apart. If this was going to be the school for Johnny, they were going to have to prove to us why they were in fact our best option to help him. Like 2 lions caring for their cub, there was no way ANYONE was going near our boy without showing us their worth. Melanie met with us and told us a bit about the school,how it developed and the role she played in it’s development and growth. She told us about the school’s philosophy and the structure of the student’s day. She explained how some of the day was spent as a group and how some of the day was spent one on one with the child’s therapist. She pointed out the window and showed us a small playground that a handful of children were playing in, all with therapists overseeing them. We looked and were shocked when we saw one of the therapists, typing on her phone. We thought ‘forget this place’ and Peter (the dad) said to Melanie, “Do you know that one is texting right now. Melanie looked and said very calmly, “She’s not texting. She’s taking notes of what the child is doing” We looked again and realized they all had either phones or tablets in their hands. After some more talk, she told us about how the students are tested regularly to map out progress and a plan. In addition, based on testing and progress, the collective team uses test scores to determine when the child is ready to “graduate” and leave The Uncommon Thread. This made no sense to us. The people who were being paid,were going to decide when our son no longer needed their help. Peter, once again, voiced to Melanie how absurd this sounded. We asked her what benefit was there for the school to graduate a child when that meant the parents would no longer pay the school. She told us that they benefit by having students graduate because they genuinely care for the children. It also makes the school look good and the parents will then tell other parents how great The Uncommon Thread is. After we went home, we discussed the school some more and eventually we decided to try it out.
Now things become a bit of a blur for us. Johnny has come so far since his first days at school it’s hard to remember all of the major milestones he hit. It really seems like in the blink of an eye he was talking, forming full sentences, sitting quietly as stories were read to him and actively participating in conversations and group activities. Every step of the way, Johnny’s BCBA was right there to set new goals for him, push and encourage him when he needed it and counsel and teach us as well. Whenever we had a question or a concern, Johnny’s BCBA was always quick to respond and help out. If we had an issue with him at home, we let Johnny’s BCBA know and she would come up with a solution …… which, within a few times changing our behavior, his would change in return! Johnny’s BCBA and her team truly were miracle workers! As the weeks went by, we started noticing more and more growth and development from Johnny. His vocabulary grew, his behavior improved and his abilities were getting better each day. When we dropped Johnny off for school one morning, the day before we were supposed to have a meeting regarding his progress, Johnny’s BCBA told us she was holding off from writing a progress report for him because every time she sets a goal for him, he masters it in a day or so. We couldn’t believe that our son, the boy who barely spoke when he started at the school was becoming a “star student”.
Next thing we knew, we were going to be going from 5 days a week at “TUT” to 3 days a week there and 2 days at a local preschool with a shadow. He adapted really well to the new routine and was interacting well with the other kids in his new school. We’ll never forget the day that Peter showed up at the new school to pick Johnny up and found his shadow standing outside of the class. Peter looked at her with a confused look on his face and she said to him, with tears in her eyes, “I haven’t been in there at all today. He’s doing AMAZING!” Peter had to choke back his own tears and fight with the huge lump that had grown in his throat. Not only was “The Uncommon Thread” able to get our son prepared to enter and work well in a typical classroom setting but they also genuinely cared about him! We don’t know how we got so lucky in finding this amazing place with such a wonderful staff ……. but are sure glad we did!
Johnny continued to go to “TUT” twice a week, during the summer, and a day camp with a shadow 3 days a week. When school started up again we had moved him to a different preschool that our older son went to. Johnny’s BCBA went to check out the school when Johnny started and as it turned out the school had changed the way they taught the Pre-K kids to a very loose structured classroom setting where the kids basically decided what they wanted and didn’t want to do. This wasn’t going to work for our son and we all knew it.
Johnny’s BCBA took time to speak with the principal and the teachers and basically got them to change a lot of their philosophies and practices to suit Johnny’s needs. That’s not to say that they changed the whole curriculum but they tweaked it enough to be better suited to encourage Johnny to explore new things, learn more and interact with his peers.
It was in December of 2015 that the moment we had been dreading finally came. Johnny’s BCBA and Mel needed to have a meeting with us to let us know that it was time that Johnny graduated, and moved into a typical preschool class 5 days a week. Deep down we knew this was going to happen and we were also pretty sure he was ready. Truth be told, It was us who were not ready for this big step. We were scared that without “The Uncommon Thread”, our son would regress and all of his progress would fly out the window.
Both Johnny’s BCBA and Mel assured us that he was ready, that he wouldn’t progress anymore if he stayed at “TUT”, that this was the best thing for him, and that they weren’t just kicking us out the door and saying good bye and good luck. They had Jennifer, the woman who worked with Johnny since the summer, come and be his Shadow for the first few weeks of school. Johnny’s BCBA also met with the principal and the teachers to discuss Johnny and where he was developmentally, and how to work with him the best. His transition to his new school went beautifully and he is doing great.
We are also considering sending him to the public preschool now, and when we went to meet with the school, Johnny’s BCBA made time in her schedule to be right by our sides and help explain his growth as well as what he still needs to work on. It’s as if we never left “The Uncommon Thread”. The decision to go to the public school is because he would be in a typical classroom setting as well as get both speech and OT services and we would no longer have to do all of this privately. Recently, he had both his speech and OT evaluations from the school and both of the people who tested him said he did great and that he did way better than most of the children they evaluate. I know this wouldn’t have been the case were it not for the hard and amazing work everyone at the “The Uncommon Thread” did with our son.
So, this was our experience with “The Uncommon Thread”. We understand that every child is different and each one develops on his or her own schedule. We just hope that if you are now,where we were back in 2014, you give “The Uncommon Thread” a chance to help you and your child. It truly is an amazing school with an even more amazing staff!
Sincerely,
Johnny’s Mom
(The child’s name was changed to protect his identity) Previously published 4/14/2016
