Milestones

An update on how Micah is doing these days

It’s been a while since I’ve written about Micah, so I thought I’d take some time to give an update and summary on how he is doing these days.

For those who may not know, our son Micah has a rare genetic syndrome called Kabuki Syndrome as well as something called childhood apraxia of speech. I’ve detailed his journey to his diagnosis in a previous blog post. In late January he started attending a special education preschool through the Omaha Public School system. It was a class of twenty kids – ten who where developing at a more typical pace, and ten (including Micah) that had some developmental delays. He was able to ride the school bus to school and back each morning.  It was really great for him. Before he went he didn’t really speak more than one word at a time. But over the course of his time at preschool he started getting better with his vocabulary and even his ability to say two word and sometimes even three word combos. (I’ll never forget the day he told me “I love you!”)

At this school he was able to see a speech therapist twice a week and an occupational therapist about once a week. It was a blessing to have those services provided to Micah. I can’t express how grateful I am for his teachers and his therapists and bus drivers and other paraprofessionals.

After the normal school year ended he attended a summer school program through the Omaha Public Schools for the month of June. I actually don’t know much about his school days during summer school, but I think it was more activity driven than educationally driven. I could be completely wrong about that, but it was hard to figure out what happened at school every day from Micah. During the normal school year Micah received a note every day about his day went. But that didn’t happen during summer school.

During the summer Micah’s vocabulary really blossomed. Two and three word sentences started to become more normal and expected for him. He has a hard time enunciating clearly, so sometimes only Sarah and I can truly understand what he is saying, but he’s trying and continually getting better. It’s really fun and encouraging. There’s been times where I wondered if he would ever talk. He will, and is, but it’s just taking a bit longer. And that’s ok.

***

Sarah and I accepted our job at Boys Town in June and we started to prepare Micah and Ezra for the fact that we would be moving to a new house. They were both very excited about it. We drove over a couple times to see where we would be living and our place got nicknamed “the big house” by the boys.

In the move we changed school districts. After a few phone calls and some paperwork, Micah started school on August 15th. Sarah and I were deep into our training for our new roles at Boys Town, so Sarah’s mom graciously came from Indiana to help with the boys and to get Micah to his new preschool.

***

Micah’s new school is very nice. His teachers have told us how much they enjoy having Micah in class and that he’s the happiest kid every day. Always willing to participate in any and every activity. She said she knows she’ll always have at least one person willing to participate in the various activities throughout the school day.

Micah’s smile is infectious. His energy is astounding. His determination and excitement is unmatched. It’s so satisfying to have his teachers recognize that about him.

Yesterday he came home from school and got his school photo sheet out from his backpack. Sarah and I were in a budget meeting, but when I saw his picture I couldn’t hold in my, “awwwww!!! Oh my goodness!” So stinking cute.

I don’t know how the school photographer did it, but it’s near impossible to get Micah to smile while opening his eyes when he knows he is getting his picture taken. School photographers are magicians.

***

Anyway, all this to say that Micah is doing well. His transition from our old home to Boys Town has gone well. He no longer sleeps in our bed as of a few weeks ago. His speech gets better and better nearly every day.

He may not be hitting the milestones for what is considered “normal” for a kid his age, but he is definitely making progress at his own pace. I’ve heard this sort of progress referred to as “inchstones” instead of milestones. Micah experiences all sorts of inchstones all the time. And for that I think Sarah and I may be more appreciative and grateful when we see these little moments of progress.

***

Sometimes it is bittersweet because of his brother Ezra. In many ways Ezra has surpassed Micah in most of the cognitive and language milestones. Ezra is 18 months younger than Micah but is speaking in complete sentences and talks all the time now. He still isn’t always clear, but his language has exploded within the past four months or so.

The other day Micah wanted Sarah to take him to the bathroom. He said, “Potty, mommy! Help please!” and Sarah told him that he was able to go to the bathroom by himself and that he didn’t need her help this time. So Micah turned to me and said, “Potty, daddy! Help please!” I told him that he could go by himself. So Micah then turned to Ezra and said, “Help please, Ezra!”

Ezra turned to Micah and said, “Ok. What do you need me to do for you?”

Micah showed Ezra the door and asked him to open it for him. Ezra then replied, “Ok, I can do that” and went over to the door and opened it for him and walked him into the bathroom, closed the door, and came back.

It was a moment that Sarah and I looked at each other realizing just how far Ezra has come and how Micah and Ezra are able to interact with each other as brothers and friends.

***

Sarah and I will soon have a house full of teenage girls living with us. I’m definitely curious to see how that transition will impact Micah and Ezra. The social aspect will be incredible for both of them. More attention. More love. More language being spoken and modeled. (Hopefully in a good way!)

After the girls arrive and we’ve transitioned into our new normal, I’ll give another update on how things have changed and progressed.