Easter 2015 - John Michael Update!

Easter 2015

How has it been 6 months since my last post?

John Michael continues to mature and grow. In so many ways, he's doing very well... in school he's beginning to read aloud in class which has been a struggle for him up to now. He has a growing list of sight words that he knows and has been doing great on his spelling tests all year, averaging about 9 out of 12 correct each week. His writing ability and speed of writing his name and other letters has really improved this year, including legibility. He also writes his numbers correctly and quickly without any thought. On a rare occasion he even reads for me, and when he does, I'm thrilled!

Homework continues to be a challenge for him. His teacher sends home a homework package on Mondays and the kids have 3 pages per night, all due on Friday. John Michael averages 1 to 2 pages a night at most. Some nights he does none. So by week's end, he has about 7 out of 12 pages completed. I'm not a fan of homework at this age. I just want him to be able to come home, have a snack and play basketball or baseball outside with Luke and Greta while I prep dinner. John Michael works so hard at school all day to perform at his absolute best that by the time he gets home, he's completely wiped out. 3 of 5 days he has Speech Therapy and/or Occupational Therapy off-site at a public school and 2 days after school, he has 2 more hours of Adaptive Skills training. There really isn't anything left in him, so I don't even ask him to look at homework on those days unless homework is part of his AST goals for that day.

John Michael's verbal skills are amazing! He has complex sentences and can tell me his needs and parts of his school day (when he feels like sharing!) Unfortunately, he has also picked up some rude behaviors and words that are hard to break... If he doesn't want to answer someone speaking to him (anyone!), he often says, "whatever" and turns away from them. Sometimes he tells us to "be quiet". He loves attention and often sings at the top of his lungs in the car or in the kitchen and wants everyone to stop and watch him. Sometimes he does it just because I need to talk with someone. He can also reach the garage door opener button in our garage and goes out to sit on the sidewalk by himself. Yesterday was a gardening day and we knew the boys were playing together. When I saw Luke alone, I asked where John Michael was. I went to the garage and heard crying. He was UNDER my Suburban! I screamed (not the best response, but he shocked me half to death!) and pulled him out. He looked scared because he couldn't get out on his own. I don't even want to think what COULD have happened. He continues to make dangerous decisions, not realizing the harm he could be putting himself into. This boy needs to be watched constantly and as soon as it gets quiet in my house, I know something's up!

I often lament at how hard it is to keep my house tidy with 5 active kids. It seems like ages ago that I prided myself with a clean and tidy house. Then again, I only had 2 kids, or maybe 3 at the time. With the birth of John Michael, something shifted in me and my priorities changed. My Martha Stewart tendencies were pushed under my kitchen rug along with my decorating and organizational skills and I've learned to be more patient and chill (I'm far from perfect, though!) Now, when I need to clear my head, I go for a run on our nature trails. Hearing the birds and the turkeys, seeing the occasional deer or coyote, watching the hawks circling above the grassy trails along the river, and seeing other runners, cyclists and horseback riders cross my path makes me feel grounded and at peace. I walk in the house and I'm ready to take on whatever is next on my endless list of to-do's before picking up the kids.

So much has changed these past 6 months. It's impossible to recap, but I look forward to what lies ahead. Every day is a new beginning. Even if the day before was filled with behavior challenges, spills and sibling squabbles, it all resets by the next morning. I'm happy to snuggle with John Michael, who climbs into our bed most mornings around 6:15am to cuddle for a few moments before we get up for school. For me, while I'm inconsistent, this blog continues to be my online account of our journey having a child with Down syndrome and I only hope it helps another family in a similar situation. I'm grateful for all the wonderful Ds mom friends that continue to pave the way and encourage me in our trail off the beaten path with an inclusive Catholic school education, helping me navigate the confusing world of supplements, medications, therapies and supportive aid. This road would be so much more difficult to navigate without the support of The Sisterhood and the dear friends I've made along the way. 7 years later and I can still say I wouldn't change John Michael and take away his Ds. It's how he was made and it's just a part of him. I would change the learning challenges and the increased risk of getting Alzheimer's at an early age. Hopefully the research that is ongoing will be beneficial to John Michael before it's too late. We will definitely continue to help him be the best he can be and give him every opportunity to grow and learn. One great lesson I've learned is to never set a limit on what you think your child can do. For John Michael, the sky's the limit and only he can let us know when a goal is not reasonable and we need to reset our expectations. Until then, we will shoot for the stars and if he misses, he can still land on the moon. :-)