Erik Quinn: The Heart of a Family: Flying Colors

Saturday, October 06, 2007

Flying Colors

What you don't have you don't need it now
What you don't know you can feel it somehow


-- U2 "Beautiful Day"

The song I listened to several times the day Erik was born. It still makes me cry.



Yes, I know it's early. I have been up since 2:15 with a briefly sobbing child. I have no idea how long he had been lying in a ball on the floor behind his door with his bedroom light on crying, so guilt prompted me to scoop him up in my arms and take him to bed with us. This is something I rarely do. I put him between us, and his hands ran over the contours of each of our faces in the dark. Realizing his father was lying there, he greeted him with the usual, "Hi, Booga." After a little mumbling to himself in an obviously happy state of mind, he fell into a deep sleep.

Erik snores like a dump truck repeatedly driving through a nitroglycerin plant. In fact, he makes his father look like a complete amateur. No, it's not normal for a toddler to snore. I have been informed of this and was provided handouts on sleep apnea/congestive heart failure. Although I will address this with his physician at his upcoming routine visit, while I listened to him this morning, it was quite apparent the snoring is just the familiar rattle in his chest magnified. He used to grunt loudly as a baby when he concentrated on something, and many folks thought he had asthma, as they mistook it for deep wheezing. I never worried about this and grew to love it along with the other strange physical quirks my baby has. When your body is missing one of the essential components to keep things springy and tight, you can't expect everything in your chest not to shimmy around a bit. However, sleeping with him is completely futile. My baby's adorable, but he's a freaking rattletrap. Always has been.

Today is Erik's birthday party. Although there will be brightly colored balloons and the appropriate decorations, I have kept the pediatric guest list to a minimum this year once again because of Erik's tastes/hearing, and the annual event still has a very definite cocktail party feel to it with a few adult friends and family members. It probably always will, because that's where Erik is happiest--around adults having a good time. I fantasize about Erik being the center of attention at future parties here, playing the piano and loving every second of it. Maybe I can set up a tip jar.

Erik's IFSP was Thursday. He was tested by two staff members at his school, one of whom has worked with him since he first attended and one of whom was present the awful day he was labeled "severely developmentally delayed" for reasons we had yet to discover. I'm delighted to report that the evaluation room no longer infuses me with depression that lingers long after I exit now. However, the obnoxious hum of the fluorescent lights, the bland-colored miniature furniture, and the looming stacks of paperwork inside make me instantly exhausted to my bones.

Erik was seated at the tiny table and given a rapid salvo of instructions to follow, including answering questions about photos in a book, stacking blocks in a tall tower, and putting rings on a stacking toy. He was then asked to climb a set of tiny stairs. I sat silently with Brian, and we attempted not to be a distraction during testing. Although Erik was completely distracted by the sounds in the hall and we had to close the blinds to minimize visual stimuli, he did beautifully. The kid obviously doesn't test well, and it was quite apparent to these ladies that he knew exactly how to answer the questions and respond to their instructions but would rather be socializing with them or finding a toy truck to roll around the room. The tester that is not familiar with Erik kept having to hide her face in the crook of her arm or turn away, as he would greet her repeatedly in falsetto, and she tried to remain serious, very ineffectively trying to stifle her giggles. He would smile sweetly and cock his head often, precisely imitating the cute noises Janet made as she demonstrated what she wanted him to do.

Erik's preschool teacher then joined us, and we completed his goals. I explained that if there was anything I have learned at their facility, it was that I believe anything is possible for Erik. Goals on paper looked insurmountable at first, and I was easily discouraged. At this point, even if I wince and wonder if one of his goals is realistic, I can freely admit that all things are possible. It's not the end of the world if he doesn't accomplish a specific goal set, but he has demonstrated time and time again that I need not worry about that happening regularly.

The test was scored down the hall while we waited. Instead of feeling anxious, I tried to fight falling asleep as the room did its best to suck the life force from me. As for the test results, we will receive a formal report by mail soon, but Janet and Allie soon returned and let us glance at the paperwork after smiling and informing us we might be surprised by the results.

Most areas of Erik's development were quite comfortably charted in the meat of the purple "typical" range on the graph.

Typical?

Wow.

The only part of the testing he failed miserably was gross motor. He was asked to walk up and down that set of tiny wooden stairs in the room and appeared as though he had downed four Long Island ice teas before attempting this. It didn't help that he wasn't interested in the task, either. I again explained the visuospatial problems that are and always will be a fact of life for Erik and then my confidence in him, knowing he will grow and master using other senses to accomplish tasks like these during which his eyes and brain don't seem to communicate normally. He will find his own way in his own time. I couldn't be more proud or more confident.

By looking at the test scores, Erik would NOT qualify for special education services. Oh, yes. He's that good. However, because of his diagnosis, he automatically qualifies. My hope for the future is to find a niche for Erik between special education and typical education to guide him through school. I want him to enjoy a normal life but receive the services that work for him, no matter what they are. I am not a mother who insists upon everything in Erik's life being "perfectly typical," because he's not and never will be. However, I am quite sure there is a perfect place that's typical for Erik and our family in the world, and we are well on our way to finding it. That's very exciting.

Three years ago tomorrow at this time of the morning, I was exactly one week overdue, bulging with baby. I was probably awake in this very chair making the music CD I would take to the hospital to listen to while I was in labor, blissfully unaware that Erik was about to give us all a great scare on the monitor that would be strapped around me to record his mysterious life rhythm. He threatened to quietly slip away from this world, but hours later he would be tucked into a hospital bed with me sleeping peacefully, as if he had been with me all of my life.

I will be the mother of a 3-year-old this weekend.

That's exciting, too.

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17 Comments:

Anonymous Gua said...

Who ever thought I'd think that Erik NOT being eligible for special ed would be a bad thing! How the world can change in 3 years!
Erik's birthday is right up there with Christmas-- what a wonderful celebration! Boppa and I had such pleasure getting his cake ready.. and agreed that we aren't typical, either, as we'd just spent 2 hours carving, frosting, and making cake "dirt" for a front end loader, grinning like fools the whole time.
This is such an adventure the little guy is taking us on.. not always fun, for sure, but a chance to really stretch our creativity in so many ways. Sometimes I like the fact that there aren't pat answers to life with Erik. We're all doing it our way, and it's working very, very well.
When I count my blessings, the first on is always Erik. And I think you know who comes next!

Love, Mom

6:50 AM  
Blogger camille said...

Nancy,
That's incredible. You just gave me so much hope. Thank you. I'm so proud of Erik, think how far he's come. Wow!!
Happy Birthday Erik!!!! Give him a squeeze for us :)

7:56 AM  
Blogger Lizard Eater said...

I love this.

Happy Birthday to the Mama. (Really now, shouldn't it be WE who get the gifts? C'mon!)

8:04 AM  
Blogger LZ Blogger said...

Nance ~

With all of this going on... it's no wonder that you were up at 2:15 a.m.

It IS a beautiful day!

Happy Birthday to Eric. He and I have something in common... NO not our birthdays... you see, I too snore like a dump truck repeatedly driving through a nitroglycerin plant.

I hope that Eric has a VERY SPECIAL BIRTHDAY PARTY!!! After all IT IS A BEAUTIFUL DAY! And he is a very lucky and special kid. ~ jb///

8:46 AM  
Blogger Kerry said...

Michael used to snore like an adult from as early as I can remember. He ended up having his tonsils out when he was five and afterwards was so quiet sleeping we would go in and make sure he was still breathing. Just so you know, he wasn't diagnosed til we switched doctors when he was turning five and the new doc looked down his mouth and said, "Those are the largest tonsils I have ever seen!"

What an awesome feeling you must have had during his IFSP - how fabulous!! I hope he has a terrific party today ~ happy almost-birthday Erik!

10:14 AM  
Blogger Teresa & Shawn said...

Happy Birthday, Erik! Sending lots of hugs, kisses, and birthday wishes your way!

1:14 PM  
Blogger All moments remembered said...

NANCY as always you fill my heart with so much and my eyes with tears! Your writings always touch me deeply.

HAPPY BIRHTDAY TO ERIK!!!! HAPPY " BIRTH" day to mommy too!!!

I sent you an email! Thanks for sharing your heart with us and all the others you touch!!
Stacey

3:35 PM  
Blogger Heather said...

Happy 3rd birthday Erik..... Lot's of hugs and kisses, from Heather and Caleb. Nice results Nancy! I'm happy for you and him... :) Heather

4:13 PM  
Anonymous Anonymous said...

Happy Birthday to Erik, and congratulations to Mama. What a great day!

Sandra

4:48 PM  
Anonymous Jean Claude said...

Happy Bday to Erik and to you as well Nancy. I hope Erik had a great day and that it was everything he wanted it to be. I am sure you did your part to make sure things were perfect and in the proper order.

I am so proud of you and Erik. What you and he have accomplished in his short 3 years is amazing. His test results are so very exciting and such an achievement. Again I am amazed but not surprised by what you and Erik have accomplished. I know that Erik will face many challenges in the future however with you in his corner he will come through them in flying colors. You are such a special person the words to fully describe you have not been invented.

Be pleased with what you have accomplished and happy in the knowledge that you have passed your incredible will, strong spirit and caring heart on to Erik. These gifts will serve him well as he grows and I know they will continue to be invaluable to you as well.

Get some rest and take care of yourself. Please?

Your favorite lurker.

11:02 PM  
Blogger Julie said...

Way to go Eric. Happy Birthday buddy!!! You put the most wonderful smile on my face Nancy. I just wanted to relay to you what some of the school age moms said at the conference. When I asked why they preferred there children be mainstreamed they said there kids were more "typical" when around "typical" kids. I just thought that was something worthwhile to pass along. Some food for thought. I hope you don't mind but I want Noah's OT to read this post because you displayed so well what it is like for our kids with the visual spatial stuff. No text book could explain it better.

6:42 AM  
Blogger kathi said...

That's amazing!! And Happy Birthday to you both! I hope the party is 100% what makes Erik happy, and I know that will make you happy, too.

10:11 AM  
Blogger Whitney said...

Happy 3rd birthday to Erik I hope his party when well. Congrats on the results thats great and makes me less apprehensive about Blakes future.

2:44 PM  
Blogger Michelle said...

happy birthday Erik! Hope the party was a huge success! Sounds like he really wowed them at the IFSP :) I always disliked those too - because those were the days Kayla didn't want to cooperate with what I KNEW she could do, and if the therapists didn't see her doing it then it didn't count.

8:14 PM  
Blogger Aspen said...

HAPPY BIRTHDAY ERIK! I wish we could have been there to help you celebrate. We love you and we miss you. Big kisses for your birthday!

7:29 AM  
Blogger Lisa R said...

Erik is doing awesome you should be so proud!!!!!I can nopt believe he is three woah what a old man no wonder he snors :)

10:04 AM  
Blogger Every minute counts.... said...

Happy Brithday Erik! Three is a great age...not quite baby but still little enough to hug and love his mom!
The little bit of independence makes taking care of them just a little bit easier somedays. Congrats on the test scores.

Noel

1:49 PM  

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