Tag, You’re It

Sitting in the waiting room of the therapist’s office waiting on the completion of a language evaluation, I can’t help but feel a bit like a veteran mom with all this. We are here for kind of a checkup, but it was roughly 5 years ago that we began our autism journey with just that, a speech/language evaluation.

As I’ve written about in prior posts, our symptoms came along very gradually and speech/language was our first and only indicator that there was anything amiss. Since then we have been on the therapy carousel, always trying to find the magic combination of therapies to take on the effects of autism. It’s an ever-changing mix of therapies that we tweak every six months or so. The brain is an amazing organ, and as Jim has matured, the growth and strides that he’s made have been nothing short of phenomenal, especially given where we started.  We are always vigilant for any extra tweaks or support we need to provide – hence, the language eval.

Finding the right mix requires a lot of thought and patience, and when you discover that a change is needed it can be a very taxing process to evaluate the needs, evaluate the providers, and ultimately determine a new direction. I have watched a number of families go through a change of approach, and it can be bittersweet, happy, scary, hopeful, exciting all rolled into one. Sometimes changes are needed because there has been progress. Sometimes it’s because that progress has stagnated. With every stride there is change. You get to know your therapists over time, and probably the biggest source of a strong bond is the fact that as a parent you feel like you have a teammate in the fight and someone who truly cares and advocates for your child. It can be a lonely walk day-to-day.  Parents lean on therapists for support and guidance, and over time, you come to be experts on your child from different angles. This is why having to make changes in schools or therapies can be tough stuff. But new directions can also be exciting as they have the potential to unlock progress. As I look around the waiting room, I see lots of parents all doing the same thing — trying to find that right mix, the right balance.  Some have that look of angst on their face that everyone has at the beginning of things or when things take an really unexpected turn with symptoms.  Others are in a better place, which is always nice to see.

Lately, we have gotten mostly good news, and it has brought us to a new place in this journey.  The greater maturity, academic confidence, and increased social engagement has been amazing over the last few months.  It’s a trajectory that is really encouraging, but now we are in a spot where I know we have to grind out progress and stay focused.  The holiday time always lends itself to greater reflection, and there is no doubt that I have been in that mode a lot over the last week or so.  The other night, as we were getting dinner together, Jim came into the kitchen, and we had a back and forth conversation that lasted a minute or two.  He ran out of the kitchen to go play, and I felt the tears well up.  My husband looked at me like “What is the matter?”   I could barely talk but managed, “Did you hear that? Just a normal spontaneous conversation.”   I have learned to be patient when it comes to spontaneous language, but I have longed to be able to share the same kind of talks that I have with my oldest son.  You really take language for granted until you do not have it.  We have fought tooth and nail for every word, phrase and context, and I am so proud of how far he has come in that regard.

I have not written much about Jim’s brothers, but they have been incredible from the start.  Older brother John has been remarkably resilient as we have had to give so much focus over the last several years to the autism diagnosis.  We make great efforts to balance out the attention, but he has exhibited a patience level that few 6-8 year old kids display.  He’s embraced his brother and any and all quirks that accompany autism with understanding.  There have been flashes of totally understandable frustration for sure, but there is a brotherly love there that is heartwarming.  I’ve told them for years how lucky they are to have each other.  He’s endured a school change this year, which has been a lot for him to handle, and for the most part, he’s rolled pretty well with it.   We have all had to make changes over the last several years, but that’s how it goes – that’s life.

When baby brother came along, Jim gradually came to identify with this new big brother role.  He adores his baby brother and dotes on him constantly.  Both boys provide something to Jim that is critical and crucial along with their brotherhood.   They provide constant social support and interaction.  Over the last year, the big boys have started truly playing together like brothers will do.  Wrestling each other, chasing each other, and cracking jokes to make each other laugh.  All of that is a fairly recent thing, but where some parents may put a lid on the inevitable chaos sooner – Kenneth and I typically let it go a bit longer.  It’s music to our ears.  Baby boy has also been wonderful.  He’s gotten super playful, so now he chases Jim around the house as he zooms around the house on the Mickey Mouse ride-on that he’s 40lbs too heavy for (hattip: Disney and durable plastic toys).  He’s taught Jim about emotions (Mommy, Michael likes to cry? No honey, that’s called separation anxiety, and you had it too), boundaries (hand to the face when he gets too close), and empathy (recognizing when baby is tired, sick, happy or sad).  Most of all, the boys give Jim the most important things that siblings can give to one another – love and acceptance.  It gets this mama every time.  It’s awesome to watch, and in our mix of therapies, it’s the one that is the easiest for Jim because it’s not work.  It’s just family.

I leave one last story from a birthday party that we attended over the weekend.  We love birthday party invitations because it gives Jim the opportunity to see his friends and classmates outside of school, and it gives him an opportunity to build friendships.  Contrary to what most people think about autistic kids, they actually can be quite social.   What stinks is when you have a child with symptoms that hamper their ability to be social, but they clearly like being around people and interacting.  Anyway, I was chatting with another parent while we watched a group of boys playing in the bounce house.  She was telling me something, and I got fixated watching the boys start playing tag sort of in and out of the bounce house.  I know she probably thought I was being rude at first until she saw what I was watching.  Jim was playing tag with two of the other boys – and doing pretty well too – the boy’s fast!  Totally legit game of tag, and he was smiling and laughing.  The other boys were just being sweet boys, and all of them were having a blast.    The mom caught my gaze and said, “oh yeah, they are playing tag.”  I said, “yeah I know, that’s really big for us.”  She totally got it, and I thought my heart was going to explode.  Through all the therapy appointments, strategizing, plain hard work, and worry for the future, these moments are what make you feel like you are on top of the world.   I was just so happy for him.

As Christmas approaches, we have much hope for 2018, and we are so thankful for the little gifts of progress we received in 2017.  I know that some people look back on a year and perhaps see more bad than good, but I hope that those who have had a tough 2017 can find some good that came out of the challenging circumstance.   I do hope that everyone has a wonderful Christmas with family and friends.  We are thankful to God for so many things this year, but we are most thankful for the gift of his Son, Jesus Christ.  With Christmas comes spreading the message of love, hope, and peace that is the story of Christmas.  So tag, you’re it!