Maddox

For the past year, we've been fighting a persistent battle against illness. All 4 of us are continually  struggling with our health. Early this year we really began to hone in on what was going on with Maddox. We began to have larger concerns than just his constant runny nose.

About a month ago, I began keeping a sort of electronic journal so I would have somewhere to vent. This week I will be attempting to edit my disorderly thoughts into a somewhat readable condition. I think those heartfelt entries tell our story best.

August 1, 2011:

I don't think I can describe the first moment I knew.
There isn't a specific day or time that stands out in my mind.
There isn't even a specific sign or symptom that I can pinpoint as THE moment.
Call it mother's intuition or just a keen sense of observation.
All I know is that I've had that sinking feeling in my stomach for far too long.

Something is wrong.

It was about a month before Maddox's 1st birthday when I was finally honest enough with myself to start to let a few of the questions enter my mind....

          Wasn't Mia talking at this age?
          Didn't she know how to blow out a candle on her 1st birthday cake?
          Shouldn't he understand more?

As much as I began to ponder and worry about these things I found ways to justify them.

          Girls develop faster than boys, everyone knows that.
          He's just being a little lazy.
          He has a laid-back personality.

 But I refused to pull out the books or check the baby websites for milestones. Afraid to discover my worries might be justified. Then I began to notice that the other moms who had kids Maddox's age were posting all these things on facebook about what their kids were doing. Dancing on coffee tables, climbing out of their cribs, dismantling household items... talking. My son wasn't doing any of those things. Finally, I watched a video one mom posted of her son only 3 weeks older who was singing and doing all the hand motions to the itsy bitsy spider. In another one he was answering yes and no questions and raising his hands in the air and saying hallelujah when asked how he praised Jesus. My heart began to ache a little that day. My son was nowhere near doing any of those things. From that day on I really began to watch the other kids his age and I could really see a dramatic difference.

It hurt my heart a little more each time someone would comment on how good or quiet he was. How nice that he entertains himself so well. Yes, on the outside those things look great. To me they confirmed my fears a little more. He shouldn't be so quiet or so content to just play alone. Shouldn't he be doing more?

Around 15 months of age we were at the doctor for yet another ear infection when the nurse practitioner began to ask me those questions I was afraid to answer.

          Was he speaking yet? ...No
          Does he point to things? ...No
          Does he seem very tactile? ...Yes
          Does he respond well to his name? ...Sometimes
         
What bothered me the most was her facial expression... a mix of concern and pity. I swallowed it down, again, latching on desperately to another excuse: Chronic ear infections, hearing problems. We were sent to a speech pathologist and for a hearing test. The hearing test went well. Not even a slight hearing loss. Cross that reason off the list. The speech pathologist vaguely mentioned autism but seemed to dismiss it. At the next appointment with the pediatrician, Dr. S pulled up a chair close to me and put her hand gently on my leg as she handed me a questionnaire to evaluate his development and explained that a developmental pediatrician would review it and give recommendations for further testing or treatment. I started to fill it out and just couldn't finish it when I had to answer "no" time after time. There was no more denying that we were facing something more than just a lack of speech. Then the speech pathologist gave me the number to the Central Valley Regional Center and suggested I call them right away for an evaluation. When I got home I googled CVRC and my heart sunk down to my toes as again I saw that "A" word looming on the screen.

Still, everyone one around me was trying to justify the problem. I got to the point where I could barely contain my temper when someone would tell me, "I know someone whose child didn't talk until they were 4 and they're just fine now." Who cares about someone else's kid? Or worse, yet, "Oh don't worry about it. He'll be fine. When he has something to say, he'll say it." I explained over and over that it was more that just not speaking. I felt like screaming at each well-meaning person: Stop it!!! This is MY child and I KNOW there's something wrong!!!! I finally lost it on my poor husband one day and just screamed at him to be real, to acknowledge and admit he sees what I see. I need at least one person who will say, Yes! I see it too! You're not going crazy! He might really have a problem!

So all of that led up to today. August  1, 2011. Our evaluation at CVRC. I wrestled all day with the struggle between hope that we would finally get some answers and fear at what those answers would be. It was strange to sit in a room with 6 strangers asking questions and watching Maddox's every move. Hard to sit still while I was dying to lean over and snatch a clipboard to see what they were furiously scribbling on their evaluation sheets. Finally, they were done playing with him. Time suddenly stood still as they explained that based on my answers and observing his behavior, that we qualified for assistance and he would be in the early intervention program for autism. I think I must have been turning blue because one woman actually told me to take a breath. How do you remember to breathe when your entire world just crashed down around your feet? I can't say I was surprised, but it's a hard dose of reality when you finally hear the words out loud and look around the room and see on each face that mixture of kindness and pity. I dropped off my mom and headed home to break the news to Jason. I heard myself tell him all about it and I even sounded positive and upbeat. Ready to take on the challenge and help my son beat this thing.

Then I did what a parent should never do: I started searching the internet.

I was fine until stumbling across a website that gave a poor prognosis for autistic adults to function well in society and to live unassisted. I had only been focused on the hurdle immediately ahead of us. Suddenly the next 10, 20, 30 years slapped me in the face all at once. What kind of life would my baby grow up to have? Would he ever be able to have all that I've dreamed for him? How will I provide for his future one day when I'm gone? Gone was my confidence, my hope. The floodgates exploded.

Today it's too much to handle.

Today it's too much to take in.

Today it's too much uncertainty.

Today it's too much to worry about.

Today it's too many questions.

Today it's not enough answers.

Tomorrow I will be back to myself, planning, learning and doing whatever it takes.
Tomorrow I will again be thankful for my sweet baby and I will again be able to count my blessings and remember that I have a healthy, beautiful son.

But today... I just need to let myself be a mama whose heart hurts for her child and have a good cry over it.

Weeping may endure for a night, but joy comes in the morning
~Psalm 30:5~