Monday, January 18, 2016

A Huge Milestone: Last Speech Therapy

Kai has been having speech therapy for over eight years. During that entire time, he has been working with the same wonderful speech therapist.

We met Alyson several months after Kai was diagnosed with autism. At that time, we had doubts about how much any speech therapist could help him. After all, his speech, such as it was, was limited to a few words, and he didn’t string any of them together at a time. He didn't respond to anything we said to him. The thought that we would one day be able to have a conversation with our son was a dream, and some may thought it was a pipedream.

But as Alyson worked with Kai week after week, we saw changes. Kai gained new words. And then, short sentences.

After a time, he started to respond to our questions, with just a word or two at first, but eventually with sentences.

Alyson always adapted her work to ensure that Kai kept making progress. When Kai was able to speak sentences and respond to questions, she worked on conversations - teaching Kai to continue the back-and-forth through asking relevant questions back and perspective taking.

She also worked on other aspects of speech such as understanding non-literal language. While most of us understand idioms or colloquialisms without having to think about them, a boy like Kai who had a deficit in communication skills needed extra help to understand what they meant. Alyson's work in this and other areas helped to ensure that Kai's language sounded normal, and not overly formal or processed.

Alyson periodically tested Kai through formal evaluations. These tests quantitatively measured his progress and helped her identify what to work on. She finished her latest round of testing a few weeks ago and last week we got the results – Kai’s speech was now in the normal range. He no longer needs speech therapy.

As you can imagine, we are very joyous that he has achieved this milestone. We sometimes struggle to notice all the progress Kai has made because our focus is on all the work that still needs to be done. A milestone like this reminds us of just how far he has come.

Tomorrow will be Kai's last session with Alyson. We have told him that he is ‘graduating’ from speech therapy and that Alyson will have a celebration with him to commemorate the occasion.

We are extremely grateful to Alyson. Besides being so fantastic at her job, she was always the most upbeat, enthusiastic person who Kai enjoyed seeing every week. He will miss seeing her, as will we.

But we will never forget the impact that she had on Kai. Thank you, Alyson. You are in our hearts forever.

Thursday, January 14, 2016

Finding Hope After A Rough Day

We are just over halfway through Kai's first year in middle school. There have been a lot of rocky moments during that time.

There have been many incidents, Kai has "fired" every staff member in his classroom many times over, and the school has told us that his classmates have negative impressions of him because of his difficulty in socializing with them and therefore their perceptions are mostly based on just the times when he is upset.

And while things have been trending a bit better -- there have been fewer incidents the past few months than in the first few -- it has been hard to be optimistic during these times.

The latest incident, earlier this week, was both one of the most stressful, but perhaps also a turning point of sorts.

When my wife picked up Kai at school on Monday, a staff member told her that Kai had been involved in an incident that involved another boy in the classroom. This was only the latest of many incidents that involved the same child.

After I got home from work, we spoke to Kai about what happened. He said he had been working on a puzzle during recess when the other boy came over and knocked it down. Kai said he got upset and acknowledged using some inappropriate language as he yelled at the other student.

In the past, we have struggled with Kai refusing to accept responsibility for his actions. He always blamed staff or others, and never seemed to understand that his own actions often led to whatever happened. This time, however, he calmly told us what happened, and even without our prompting, he said that he accepted responsibility for what he said. As a result, while I still took away his iPad privilege for the evening, the length of the punishment was less than it otherwise would have been. I don't know if that was his motivation for accepting responsibility, but in the past that never seemed to make a difference.

This was not to be the end of the story, however.

Later that evening, we were copied on an email that the mother of the other boy sent to the classroom teacher, therapist, and school principal as well as to us. She said that she had spoken to her son and was very upset. According to her son, the boy accidentally stepped on the puzzle that Kai was working on and Kai overreacted, punching the other boy in the nose. She went on to say that Kai routinely makes things difficult for other students and that his behavior is routinely disregarded by staff. She followed up by pleading with us to stop Kai from hurting others.

Of course, my wife and I were very upset to get this email. I first wanted to ignore and not respond at all. But after calming down (somewhat), I wrote the following response:

Dear Ms XXXX

We too were upset to learn that there had been another incident at school between (your son) and Kai. We understand and share your frustration that this continues to happen.

As you correctly point out, no one on this thread was present during this incident. And that includes you. Like you, we spoke to our son about what happened. Kai related a different perspective.

We don’t feel the need to share all the details of how his account differs from (your son's account) as we do not wish to engage in a back-and-forth about which child’s view is correct and which is wrong. Personally, we never assume that what Kai tells us represents the whole truth. It is just his perspective and is only part of the story. But forgive us for feeling the same way about (your son's) account; we believe it is his perspective and is only part of the whole story.

We also acknowledge that Kai has social, emotional, and behavioral issues that we are all working hard to address. But then, that is why he is attending (this therapeutic school). And lest you have any doubts, we work constantly to try to correct these issues. When there is an incident like this, we let him know in no uncertain terms if he has said or done something that is unacceptable, and we speak to him each time about taking the other child’s perspective and talking through how he could have handled things differently. We only hope that you are doing the same with (your son).

Raising Kai has helped us to be empathetic toward other parents who are dealing with similar issues and who send their children to (this school). We know firsthand how frustrating it is to be doing everything you can and still find your child to be involved in incidents like this. As such, we try to be understanding and supportive of others who are in our shoes, and appreciate when we get the same from others. And so I hope you can understand why we were so hurt and distressed to receive your email, and believe it is entirely unfair to suggest that all the problems rest with us and our child.

We sincerely wish the best for (your son), however, we do not wish to engage directly with you in any further dialogue on this or any other incidents. We will direct all further comments to school staff, and hope you do the same.


The next day, we received the official incident report from the school principal. Based on input from the one staff member who was in the room at the time, the other boy was the initiator and aggressor in this particular incident. That boy appeared to deliberately provoke Kai by pretending like he would knock down the puzzle. The two boys argued and were separated by the staff member. But then the other boy came back toward Kai with a closed fist. Kai raised his arm to protect himself, and accidentally hit the other boy in the nose while doing so. Staff then stepped in to prevent further escalation, and Kai was escorted out of the classroom as he was crying and upset and needed to calm down.

We were very happy to read this report. We found out that Kai's account of the incident matched with what the staff saw. More importantly, we saw that he had actually handled himself pretty well in what must have been a very difficult situation for him.

We also learned from the school that Kai is making great progress in using his words to work with staff at finding resolutions rather than becoming loud and destructive. And so, for perhaps the first time since he started middle school, I'm feeling just a bit of optimism about Kai's future.

Saturday, January 9, 2016

A Special Movie Night

It has now been 12 years since my wife's first husband, Kai's biological father, passed away about a month before Kai was born.

As she does every year, my wife lit a yahrzeit candle in memory of Kevin.

This year, however, we also commemorated the occasion by watching a special dvd that my wife had created.

Long ago, she had put away most of her old photos, the pain of her loss making it too difficult to relive those times. I don't think I fully appreciated her grief and depression during the first few years we were together.

But a few months ago, as she was sorting through things in our crawl space, she came across those old boxes of photos and was finally able to look at them and enjoy the memories. Along with the photographs were various videotapes -- from the wedding, vacations they took, and even a television commercial from Japan that her late husband had starred in. She had highlights from those tapes digitized into one dvd.

Last night, we all viewed them in a special movie night. For the first time, Kai got to see and hear his first father.

Kai seemed to get the most kick out of seeing his mom and other relatives when they were much younger. But he didn't react too much to seeing the father that he never knew.

I think that he's just too young to really appreciate it right now.

But I have a feeling that as he grows older, he will treasure having these photos and videos. Hopefully he will feel like he got to know his father.

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