Sunday, January 30, 2011

There are new years, and there are NEW YEARS...



January is almost over. (Seriously – where did it go?) I cannot believe it. It’s been a whirlwind of a month for two main reasons: Luke started at a new school, and Jeremy resigned from PepsiCo to start working on his own. I am really, really proud of Jeremy for this choice. Since August, he had been travelling a lot, and his new role will give him more flexibility to help with Luke’s new school schedule.


Why, you may be wondering, is Luke going to a new school? Well, I guess it’s time for me to write the blog post that’s been coming for about three months.* Many of you know this, but some may not. In October, Luke was diagnosed with an autism spectrum disorder, PDD-NOS. Though certainly his consistent ear fluid and resultant inconsistent hearing likely contributed to his delayed speech, months of appointments and evaluations led us to the conclusion that Luke’s failure to speak, inability to imitate, easy distractibility, infrequent eye contact, and minimal socialization with his peers weren’t just innocuous indications that he was a late bloomer; they were signs that Luke was born with autism. AutismSpeaks.org states that one out of 110 children and one out of 70 boys is born with autism. I assure you, we never thought we’d be one of the “ones”… but we are.

*A pause for levity before I continue: I bet some of you thought three months meant a first trimester, and that I was about to announce a pregnancy. Well… no. Not so much. =D


Some of you who had no idea about this may be shocked. Some of you I work with may be like, “Oh, so THAT’S why she missed so much last semester.” (Or, more likely, “So THAT’S why she’s been moodier than normal.” ;D) Those of you who have known all along know too well the gamut of emotions Jeremy and I have experienced over the last nine months. The indignation I felt in May when the audiologist suggested we see a developmental pediatrician since Luke was showing some of the red flags for autism. The tears I shed in June when his speech therapist also advised us to pursue an autism evaluation. The annoyance I felt to hear that most places don’t test until children turn 3… which was, at that point, well over a year away. The hope I felt when he failed a hearing test and there was fluid in his ears. There’s nothing wrong with my baby. It’s just his ears. The tubes will make it all better. The hopelessness I felt as I sobbed when the developmental pediatrician who finally did diagnose Luke said, “what you’ve gone through so far is a sprint, but what’s ahead is a marathon.” A marathon? You mean the past four months of emotional highs and lows, the sleepless nights, the constant anxiety… that’s just a warm up? I’ll never make it.


There were smaller instances, too, like Luke’s tears when I dropped him off at day care, knowing in my gut that they weren’t just typical drop off blues, but that he was really unhappy there. He couldn’t verbalize what those tears showed he felt: This isn’t my place. I’m not like these kids. Then there were my tears at family events, seeing Luke next to cousins his age (and even younger) and knowing that he was so far away from where he was supposed to be developmentally. I won’t lie: there have been very difficult times. I’m not naive either: I know there will be more difficult times ahead. The difference now is that God’s granted me a peace I didn’t feel before. He’s provided in incredible ways.


The single greatest provision has been a spot He opened up for us at Luke’s new school. There, he receives ABA therapy, the most recommended intervention for children on the autism spectrum. He is doing phenomenally well! Despite some emotional drop-offs the first few weeks, he now goes back smiling and ready to work! He’s learning so much, and his teachers there believe his prognosis looks good. Before I go on, here’s a key thing about autism: there’s a reason they call it a spectrum. We are richly blessed that Luke appears to be on the milder side of it. He exhibits no self-injurious behavior, and while some autistic children are very withdrawn and emote little, Luke is very loving of those he’s closest to, offering hugs, allowing others to hug him, and giving very primitive (and sloppy) kisses every now and again, too. And though he is not saying words of great importance (like “Dada” and “MAMA,” the most important word of all!!!), he can do some amazing things. HE CAN COUNT TO TEN, AND HE CAN READ THE ALPHABET. SERIOUSLY. (He’s not even two and a half. Brilliant, y’all. He’s demonstrating this reading the letters on the back of his Super Why game. Super Why is the COOLEST. THING. EVER. right now in the Roberts house. I mean, letters AND songs? PBS Kids was reading Luke’s little mind.)

He recognizes letters on books, signs, etc. and says them. He has mastered upper case letters and is starting to identify lower case letters. He’s improving more and more at repeating words. Some of his semi-frequently repeated words are cow, ig (pig), uck (duck… not anything else!), car, ball, barn, sheep, app (apple) shoulder (yes, shoulder… as in head shoulder knees and toes), head… I think there are others, but these are the most frequent ones. We certainly have no idea what the future holds, and we know that these milestones that bring us such joy right now are but baby steps in the direction of his communicating at an age-appropriate level. But we have great hopes for his potential. I tell you one thing: he has already made a remarkable impact on the world around him. His parents, grandparents, aunts, uncles, and others who know him are better and deeply changed because of it. I feel that in my soul.


I have been reluctant to use the sentence “Luke is autistic.” Perhaps three months ago, that would have been because I was fighting that realization. Today, I dislike using it because I think it is a very limited definition of who my little boy is, and who he will become. I have begun to share Luke’s diagnosis with a few people lately, and often, the first words they say in response are, “I’m sorry.” It’s certainly a natural reaction to the sharing of a disease or disorder. I don’t begrudge anyone saying this, because it’s just kind of what you do, but we don’t feel like this story has a sad ending. I’ve called our process of receiving and accepting Luke’s diagnosis an odyssey. It has been a long journey, with many very challenging parts past, and more to come, I’m sure. But like all quests, we have been richly rewarded with wisdom and joy. Please don’t pity us. Luke is a happy boy in great health. He has a TON of people who love and take care of him. Jeremy and I have a ton of people who love and take care of us, too. And if you feel compelled to respond in some way, I’d love and appreciate your prayers, and even questions about how Luke’s doing… truly, you need not walk on eggshells around us! We’re doing okay. Really. That said, if you do ask, I’ll likely talk your ear off, because I’m so excited about what God has in store for our precious boy!


If you have read all of this, thank you from the bottom of my heart. I think I needed to write it far more than any of you needed to read it, but I appreciate it very much if you did. Have a great day, and a great February! My guess is that at the rate he’s progressing, by February 28, Luke will be working complex math problems and reading his way through the Harry Potter series. ; )


Thanks for listening, dear friends! I wish you a wonderful week!

9 comments:

Becca said...

I read every word and you had me in tears. What a beautiful description of your sweet boy! We love our Cousin Luke and we can't wait to watch him grow. By the way, it is pretty stinkin' awesome that he knows his alphabet!

Jackie said...

Lisa,

You are so strong! I absolutely love that little boy. I look up to you (and Jeremy) as parents and I deeply respect you for your attitude and devotion to helping Luke become the best he can be. I can't wait to see what the future has in store for Luke. He's the greatest and you are right, he definitely has made a difference in this world... even at the age of 2! Love you.

Gerry said...

Lisa, I have such fond memories of you as a beautiful young girl, knowing even then what a bright future you have. God gave you a brilliant gift when he gave you Luke, and vice versa. I know you have great joy ahead. How wonderful for all of you to be a TEAM! What a wonderful family! I believe in miracles and I believe in you, Luke and all generations of your amazing family. I will pray for Luke to be happy, communicative, healthy and all God made him to be!!!! I know our prayers will be answered. I will pray for peace, strength and wisdom for you - and the assurance of what a special and much-loved person you are!!!! God bless you beyond what you can hope or imagine. I have a niece with autism, so I know a tiny bit and I know there is great progress ahead for Precious Luke. You have my heart. Love you, Gerry Vogt

Michelle said...

Wow. What a post. I love your spirit and your perspective. I love your obvious joy and love for Luke and your family. I think we all get different challenges in this life to teach us to rely on God and His grace and through our challenges, we are better equipped to testify to His faithfulness. I will keep your family in my prayers as you start your marathon.

erin.n.walsh said...

Thank you for sharing. I am excited to check back and hear more about Luke's new school and his progress. He is blessed to have you as parents and you are a lovely family. You will be in our prayers.

Adrian said...

WOW - there were a couple of moments that I teared up ....and then read the next sentence and your words were so brave that I sucked it up ;) I know that bravery and unconditional love is going to give Luke the power to work hard and continue to touch people's lives more than he already has.

p.s. Super Why! is the coolest thing ever, huh?

Michelle said...

That was such an amazing post...I went from tearing up to smiling at your bravery and courageous words. You and Jeremy are such wonderful parents to that sweet boy. He is so lucky to have you as well as he to you. You're all in our prayers.

Heather said...

Lisa,
You are such a hero to me...you make me want to be a stronger mommy. Luke is beyond blessed to have you and Jeremy by his side and at the front of his little heart-protecting, guiding, and loving him unconditionally.
Love you guys, Heather

Anne said...

I look forward to hearing about your guys marathon. I can't even imagine what you guys are going through. Luke sounds amazaing - i know his parents are :). I am impressed with the Alphabet - Owen didn't know his until he was well past 3.