Friday, February 27, 2015

the diagnosis

Understanding Bugaboo so that he can get the best support possible has been a journey. Many of you who have read my blog for a long time (and/or are part of our lives in real life) have watched us try to find the right therapies, go to various doctors and specialists, and then a year and a half ago get a diagnosis of mild cerebral palsy and "wait and see" on some other things.

The waiting and seeing was hard.

We continued with therapies. We tried preschool. We stuck with therapists that were working well (and that weren't taken from us after age three), and we found new therapists when others did not work well.  Some circumstances this summer pushed us forward even more in trying to unlock the mystery of our youngest child.  The crying spells and meltdowns increased.  Bug gained more words and the ability to speak more, but the communication did not improve and the echolalia became more noticeable, more frequent. The gap between how his peers interacted with each other and how our son did not interact with them grew even wider. It is a hard thing to observe this on a playground or in a Sunday school room.

So with the recommendation of our pediatrician, we recently took Bugaboo in for an evaluation. We knew what they were going to tell us. I taught elementary school. The Hubs works in the psychology field. Everything was there in the DSM (IV and V) for us to check off.

But it's one thing to know the label your child is going to be given, and it is another thing to sit at a table and have an expert  with all the paperwork tell you that label. It is not a surprise, but it is still a shock. 

In a matter of moments many of your hopes are dashed, your prayers are not answered the way you wanted them to be, and your dreams for your child's future become fuzzy.

I drove home with the boys in the minivan. Unfortunately it was Bubby's day to pick the radio station, so I didn't even have uplifting or memorable music on the ride home. I don't know why this is important to the story, but I felt a bit frustrated by it yesterday. The rest of the day had to continue. There was dinner to make, laundry to avoid, and bedtime stories to read.

A wise and trusted friend who has had a similar journey reminded me that Bugaboo is still the same Bugaboo and "God is still the same God, no matter what terminology we use to describe him." And it was comforting and true to hear that.  Today was the same as the days before our new diagnosis. We got up, went to therapy, did some things at home, met friends to eat lunch and to play, and so on.

I have fears though, tonight. I fear that the label Bug has been given will make some people view him differently or treat him differently- even more differently than they might already view/treat him. But I have no control over what people think or do. And so I share with those of you who have been on this long journey with us that the journey is really only beginning.  Bugaboo has been given an autism diagnosis. There is a lot for our family still to process, questions we have, fears we are facing, but we have been given the grace to get through our questions and fears today.

He's still the same Bugaboo he was the yesterday, the same Bug he was last week and last month. And I love him so incredibly much. What a blessed woman am I that I get to be his mama - not because he has CP or autism - but because he is Bugaboo, my son.

Wednesday, February 25, 2015


While en route home from BSF today, Bubby said to me, "When I grow up I want Bug to live with me because otherwise I will miss him."

I managed to hold in all my various types of tears.

I worry a lot about both of my boys. I worry about Bubby having to share a room with a little brother who has unexplained meltdowns. I worry about his conversations being interrupted because of having to take care of something for Bugaboo. I worry about all the time he sits in waiting rooms and doctors' offices and therapy appointments for his little brother. I worry about how a five and a half year old handles the circumstances of our lives together.

And today, without intending to, he reminded me that it's going to be okay. Their friendship and their brotherhood doesn't look like the ones their peers have, but my boys aren't missing out. Bubby's words reassured me that they are probably the best brothers in the world.

one of my favorite old snapshots of the boys

photo from tonight's Night of the Decades at Awana -
(90's decade)

Monday, February 23, 2015

the snowy days

I am not a fan of snow.

I moved to southwest Arizona right after college for a few reasons, one of which was not having to live in snow ever again.  Two years later, I was back in Missouri. And (almost ten years after that) we are still here.

Our winter this year hadn't been very snowy at all.  Then in the last week a few inches fell, the temperatures got really cold, and we got a little bit of freezing rain/ice.  Due to the weather we only had one "normal" day last week. The rest of the week our appointments were cancelled/rescheduled. And as much as I love routine and was so ready to be back into our routine this week, the break was nice.

Four days a week we have at least one place (sometimes two) for Bug to be for therapies. A couple of other days a week we have other activities for one or both of the boys. The down time was lovely. I think I stayed in pajamas or sweatpants almost every day.

Bubby loves the snow. He played for quite a while in the backyard with Scout while I watched from the kitchen table.  Bugaboo is usually ready to come in and read his books after a few minutes of walking slowly (or just standing still) in the snow.

We enjoyed the snow this last week or so. And now, in my opinion, it can leave. I'm ready for spring and the allergies the pollen brings. :)

Thursday, February 12, 2015

meltdowns, Cubbies, and Jesus

I started writing a couple of (long) paragraphs about what life is like right now. I put a positive spin on it because overall things are good. They really are.

But I'm tired this week. And I can't put a positive spin on that.

Bug has had some set-backs with meltdowns lately - they come in waves, I think a friend used that term recently. Last night was really hard for him.

He melted down at Cubbies - one of his favorite things to do all week. I thought about writing out all of what transpired with him but honestly the details are not that important. It was long and it was hard and as he was crying (and flailing and yelling so incredibly loud) I couldn't completely keep my own tears in as I sat in the hallway. It was one of his longest meltdowns in public and one of his most intense. It was heartbreaking.

He eventually calmed down, and we were able to leave early thanks to the amazing people I work with.

But the most beautiful thing happened as I was getting our belongings packed up. One of his classmates came over and gave him a hug and said good-bye, and then another classmate did the same thing.

And I saw Jesus in the compassion and understanding of two little boys wearing blue and red Cubbie vests.