Annie Golden Heart

Thursday, June 23, 2016

Thankful.

Tonight was a good night. On this special needs journey, I've discovered that other kids are often more intimidating to me than adults. Kids ask hard, blunt questions like: why can't he talk? what are on his shoes? etc. My challenge is coming up with age appropriate responses and managing the unpredictable, while fighting the urge to protect Parker from any possible pain or cruelty.  There are moments where I just want to whisk him away, and keep him holed up in our safe family bubble.
Tonight, Parker played with a little boy at the park, which honestly always makes me a little anxious. This little boy's sister, who is wheel-chair bound with significant special needs, had enjoyed the swings with us earlier in the evening.  This little girl was so beautiful--like Parker, you could tell that the swings were the best part of her day.  Her Grandma, there with her and her four siblings, was an incredibly happy, larger-than-life woman.  It was energizing just to be near them.
For the first time, I could really say Parker played WITH this little boy, not near him. Parker followed him, mimicked him, laughed with him, and was independent. He went down the big boy slide by himself. This little boy (maybe 4?) waited for Parker down the slide, helped him off the edge and up the steps, and let him slide first -- all without saying a word.
Tonight, I am humbled by a 4 year old. I am solidified in my understanding that Parker (and others with special needs) inspire kindness, empathy, and HEART in us all. And in turn, we get to pay that kindness forward. I love that.
Tonight, I am most thankful for a sweet child who innately looked out for my baby-turned-big-boy.  I hope we see him again at the park soon.  I hope that we meet many more children that have this kindness in them.

I so badly want to post a photo of this sweet boy's face, but out of respect to his family whom I don't know, I'll leave it at this.  Even here, you can see him waiting at the top of the slide for Parker to reach him. I wanted to hug this kid!

Tuesday, June 7, 2016

Are We Doing Enough?

Today is my only day off this week, and I am still hoping to spend much of it cleaning and catching up on some of the things I haven't done all year, like organizing closets and such (later).  But an article caught my attention today, and drove me deep into the never-ceasing, always-hovering question..."Are we doing enough?"  This damn question haunts me.  All.The.Time.  From therapies, to equipment, to supplements, to activities, etc.  I'm never quite sure if it is the right "stuff."  Nights that we lounge on the couch and watch The Wiggles are barraged with guilt about all of the skills we should be practicing. The guilt never stops.

The challenge of parenting in the 21st century is the endless access to information, opinions, and then some more information and opinions.  I am usually somewhat decent about reading enough to feel informed, and then making an educated decision.   The area of supplements and cognitive research goes outside my comfort zone.  As it is, we debated about using Nutrivene, which is a widely used vitamin powder.  When one of Parker's pediatricians said "If I were in your shoes, I'd be doing the same thing as you" in terms of using it, that was my solidified decision.

We are doing our best to take things day by day, and when needed, weigh the risks and the benefits, and also the opportunity cost of the things we do.  We know that the sometimes 2.5 hours of evening therapy Parker gets a week is at a financial and family-time cost to us, but the benefits of extra practice for him are worth it.  We will continue to be his advocates for life, even when that means making the tough choices and taking some chances.


Summer is within view!

I am just days away from "summer," which in my job, means time to learn, research, and have sporadic meetings and trainings.  I still get a lot of time "off" -but as all teachers know, we are rarely truly off.  In Chicago, summer means going from 62 one day to 94 a few days later.  It gets hard to plan activities, but we will at least be at the pool on those super hot days.

Right now, we are relishing in finally being at the language stage where Matt and I know what Parker is saying, but other people might not yet.  We have waited and worked for so long to get here, though we are just at the beginning stages.  Parker is so interested in speaking (when he wants to), and includes a lot of his own gibberish in the mix.  We are fiercely proud of him.