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I have no idea what the future holds for Jake...

I have no idea what the future holds for Jake...

On January 10, 2011, my three old son Jake was diagnosed with Autism Spectrum Disorder (ASD). I can remember everything about that day. It was a Monday and I had taken the day off work. The temperature outside was in the teens so Jake and I were both bundled in our puffy coats patiently waiting for his name to be called.

The waiting room was not child-friendly, surprising since it was a children’s hospital. There were some torn books scattered on a table and some weird mirror shaped like a fish that reflected everything upside down.

Jake tried amusing himself as I filled out what seemed like a million forms. There were insurance forms, privacy forms, health history, and family background questionnaires. I answered questions like:

"How much did your child weigh at birth? Has your child ever had surgery? Does your child look at you when you call his or her name? Can your child point his finger in the direction of an object? How many words can your child say and at what age did he/she say their first word(s)? Was your pregnancy “normal”? and What age did your child crawl?"

After what seemed like forever, Jake’s name was called and off he went to get weighed and measured before being ushered into a very tiny room with a huge table and a bunch of toys. I was introduced to the advance practice nurse who asked me pretty much every question I had just answered on the forms. The nurse  asked Jake (who was pretty much non-verbal at the time) questions before she “observed” him in several different controlled settings. He was asked to “play” with things like baby dolls, goldfish crackers, and a magic wand.

The nurse explained that there was no definitive “test” to diagnose autism. Rather, children must meet several criteria in a developmental screening or standardized assessment, to determine if they are on the autism spectrum.

"Well, Jake is fine, I know he does NOT have autism", I thought to myself as the nurse spoke.  Finally, after a half-hour or so the nurse turned to me and said…"your son has Autism Spectrum Disorder…".  My world was shattered. All the hopes and dreams I had for my blond-haired, blue-eyed baby boy were gone.

The weeks and months that followed Jake’s diagnosis were a blur. Suddenly the only things I talked about concerned OT, PT, sensory-seeking, redirection, speech therapy, storyboards, PECs, ABA, IEPs, support groups, dietary concerns and whether I would allow my almost 3 year old to ride the “little” school bus to his new, ABA, autism, inclusion preschool.

It was like watching someone else’s story in slow motion. Time moved on and slowly, very slowly, things started changing with Jake. He started becoming more and more verbal, using words for things like “cookie” and “tv.” He stopped pointing to get our attention and started to write his name and do “normal” preschool activities. In the immediate years following Jake’s diagnosis, we had many highs and even more lows. For every new milestone, it seemed like there was a setback hanging out on the horizon.

I have often told people having a child on “the spectrum” is like riding a roller coaster. Just when you start to get used to something and think everything is going to be ok, you plunge into another unknown and feel like you are back at square one.  Jake’s teachers and therapists always told me it’s all about the “baby steps.” I need to focus on how far his progress has come and not dwell on how far he still needs to go. While I know this advice is true, it is always easier said than done.

It’s been 9 years since Jake’s diagnosis on that cold January morning. Sometimes it seems like it was just yesterday and other days it seems like a lifetime ago. Jake is still my blue-eyed, blond-haired baby boy except this baby will be 12 in June. He attends middle school with his twin brothers and no longer needs to ride the “little bus”. Jake is on the school newspaper and takes karate classes and even made the Demo Team this past January. He loves Lego, his iPad, and YouTube and can tell you anything you want to know about the Titanic or the weather. He is funny and caring and great with little kids and draws the best comic book characters around.

However, middle school can be tough, and a couple of months ago my boy was struggling. He was being picked on by kids in his classes and was also having a hard time adjusting to the workload in middle school. I was constantly emailing or talking to his teachers, reminding them that Jake is smart and capable and in time they will see what a great kid he is. Often I would leave these conversations feeling depressed and thinking no one cared. 

One day, not long after one of my teacher conferences, I ran into Jake’s speech therapist at Target (where else). She’s known Jake since he was 4 and I was filling her in on was happening at school. After my rant, she looked at me for a minute and then reminded me, as she had many years before, to focus on the baby steps and think about how far Jake had come instead of dwelling on how far he needed to go. Never have truer words been spoken.

I have no idea what the future holds for Jake. Will he get into pre-algebra next year? Will he meet a nice girl and go to prom? Will he grow up and be a storm chaser? Who knows, but what I do know is that my blue-eyed, blond-haired baby boy will be successful and can conquer any challenge that comes his way (albeit not always willingly – lol) and I will always be there with him.

Since discovering Tiny Tags over a year ago I have become a bit of a TT junkie. I was initially drawn to the pieces because of the simplicity and delicacy of their styles. Having 4 boys, I wanted a necklace to represent my kids but I didn’t want it to scream “mom necklace” and the circle pendant did just that.

Back in November, when I was looking to treat myself to an early Christmas present, I came across the My Story Charms and immediately added the autism charm to my cart. Again, the pendant is simple and the size is great. I wear it to remind myself of Jake and his journey.

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