scoop's blog

I've spoken at length about Andrew's diagnosis and undiagnosis and the arrogance I have as a mother to assume I can will him to be "normal" and label-free.  I'm now a graduate student (pending GRE results) in special education and I'm becoming ok with not knowing what the future holds.  I don't need to figure it out today and I've realized with each chapter of my courses that we can treat Drew's weak areas one at a time and continue to check them off and add new ones as he grows.  It's ok.  He continues to improve and move one notch closer to normal or typical ( I hate both terms) with every minute of effort we apply.  It's ok that one day, he might not move up any more.  It's ok because he will have done more to reach his full potential than other children his age.  I'll accept that, if it happens, and I will continue to love him unconditionally and support him and fight for him...normal, delayed or above average.

Brian is my lifeline.  He doesn't deny anything I say about my fears but helps me work through things.  He came up with a wonderful way to eliminate Drew's hand flapping.  He tells him that if he's happy and he knows it, clap his hands!  He says it in a funny way that makes Andrew catch himself midflap and change to clapping.  Clapping is much more socially acceptable and we're seeing him resort to that action now without prompting!  Our next task is to limit Drew's policing.  He'll tell peers not to do something, which is cute now but could be socially isolating in the future.  My greatest fear is that Andrew will experience bullying or isolation from something over which he has no control.

The day Drew was diagnosed I became closer to a co-worker who has a son with Asberger's syndrome.  She had been there when I foolishly tried to continue that day at work.  She had dried my tears.  Pamela has lived with Asperger's for the last 5 years.  Her son wasn't diagnosed until 13.  My texts say it is a disorder but I like syndrome because those with it are quirky and unique but don't have a disorder, in my view.  They are smart and funny and lovable but a little different to you and I.  They might not get the "common sense" joke you toss at them...the first time anyway. 

Drew's characteristics are consistent with Asperger's though I continue to resist any labels at this time.  He is just too young.  Being the person I am though, I chose to study it in each class.  I want to know more, just in case.   Below is Pamela's letter I'm using in a class.  It hits home because so much of it is similar to us.  I just want you to see how she has coped so you can all continue to support us no matter what the future holds.

 

~~~Laughter Through the Tears~~~

                                                By Pamela Federline

 
Living with and raising a child with disabilities, I craved something normal.  My marriage hadn’t been normal.  The last years together as a family had been like living on a yo-yo that kept me edgy and unhappy.  Drugs and alcohol will do that to you.  Not me.  I was a bystander who wouldn’t touch the stuff if my life depended on it.  My son was a victim of it.  His father couldn’t leave it alone – if it wasn’t drugs, it was alcohol.  If not alcohol, it was gambling.  And the cigarettes I deplored were a constant.  He truly personified the addictive personality.  He wasn’t a bad man.  He just didn’t seem to care that he hurt others with his abuse.  I should have seen that more clearly from the beginning, but I didn’t.  When the blinders were lifted, it was time for me to get a life jacket, grab the kid, and jump rather than sink with the boat, as my father so aptly pointed out. 
My son didn’t handle change well.  I knew it, but my life was so unsettled.  I was trying to find the perfect balance of being happy with work, happy in a relationship, and caring for my son – not always juggling the three in the right order or with equal balance.   I finally gave up on the relationship ball.  It was simply too heartbreaking to bring someone into my life, only to find that they couldn’t handle the challenges I lived with at home.  I can remember my father asking me before he died, “What’s happened to my happy girl?” The weighty question seemed to whisper in my head for years after my divorce and the death of my father.  
The formal diagnosis of Nick’s autism at age thirteen helped me put so much in perspective.  After all the years of behavior problems I didn’t understand, and learning disabilities that seemed to rule Nick’s days and my nights, I had reason to pause and feel guilty for every argument with him when he was filtering it through his autism; for disciplining behaviors he simply couldn’t control; for somehow missing the early red flags; for bringing a few men in my life who didn’t want to be a part of my son’s life; for moving him so many times when all he really wanted was to stay in one place near his Grammy and Grandbear.  On the other hand, it’s a futile guilt.  Not one you can atone for, but one you must learn to forgive within yourself. 
Then, one rainy day in October 2003, my son and I were unpacking a box in his bedroom, finally finding time to get to the leftover boxes stuffed in his closet from moving in the spring.  This was a normal event for us – moving and unpacking boxes.  It wasn’t unusual for things to just stay in boxes, be retaped and moved again.  It seems like a lifetime ago, but between Nick’s fifth birthday in 1995 and that rainy day in 2003 at age 13, we had lived in three states in two duplexes, two apartments, one house, one condo, and a bedroom at my parents before moving to a rental house in Wilmington, N.C.  Just a few months before, he had been formally diagnosed with a form of high functioning autism called Asperger’s Syndrome. 
The enormity of how much change he had been forced to live with sometimes overwhelmed me.  For me, trying to make home stable became really important.  However, this was made difficult by being packrats.  Both of us had trouble letting go of things that somehow tied us to the past.  For Nick, it was even more difficult.  I think that all the changes in homes led him to hang onto his toys as the only things he could rely on that didn’t change. 
I usually kept a donate box and trashbag handy as we went through boxes to try and weed out things that he didn’t need or had outgrown, but everything seemed to get an argument.  I was resigned to having to wait until he was out of town visiting family to get rid of things he would not likely miss unless he saw them going away.  Most of it would probably end up back in the box in the closet, at least for a while. 
Nick had wearied of the process and was playing with one of newly rediscovered toys when I pulled out a bright orange envelope addressed to Nick in a familiar hand with an address I hadn’t been to since 1997.   My father’s handwriting swam in my eyes as tears silently started falling for a loss still so palpable, now six years later.  I opened the envelope and pulled out the card, bracing myself for the sharp stab of pain at whatever whimsical thing he would have written to his first grandchild.  “Boo” said the words in a bubble from a ghost on front, and on the inside, a Happy Halloween wish from his Pop Pop and Arno, the dog.  He had sent the card to Nick, probably with a five dollar bill in it, when he was about four years old.  “Daddy,” I thought.  Oh how I missed him and the support he would have offered over the years.  The tears started falling more swiftly and I could no longer hide them from Nick, who turned around at my sniffle and asked with a concerned look on his face, “Mommy, are you okay?”
“Sure sweetie.  I’m okay.  I just found a card from Pop Pop and I haven’t seen his handwriting for a while, so it made me a little sad.” 
“Okay,” he said, and turned back to his card sorting, oblivious to the pain I was feeling.  The whole concept of missing a grandfather he barely knew must have been foreign to him.   At the time I thought maybe autism is a blessing if it can shield you from such a deep well of pain. 
I wiped the tears away with my sleeve, replaced the card in the envelope and set it aside, reaching into the box again for the next item.  As I pulled a freezer bag out of the box, my hand stopped in mid-air.  I was holding what might have been the first red flag of autism for my son.  The red flag I missed because no one ever asked me if Nick had strange play habits until he was thirteen years old. 
In my hands was a plastic bag with probably 50 rubber tires of varying size in it that Nick had taken off every vehicle bigger than a matchbox car when he was younger.  He would set the tires aside, much to my dismay, leaving them for me to clean up.  Patiently, or impatiently, for years, I matched tires to cars and trucks about once a week until one day I’d had it.  He was about seven and I was tired of picking up and matching tires.  My mind instantly went to the day I was filling out an assessment form about Nicholas just a few months before; a form that with every question was making me that much surer that he probably had autism.  Then, there it was, the answer to a simple question that had somehow been waving wildly in my face for years – and one I had missed. 
“Does your child have unusual play habits like taking the tires off cars and trucks and playing with them separately?”  Check.  Yes. 
All the sudden, sitting on the floor in Nick’s room with that bag of tires in my hand, the absurdity that I had been asked that question and it somehow led, in part, to a diagnosis of autism, burst a well I could not contain. I had just dried the tears from a reminder of a loss so deep, only to be confronted with the other huge loss in my life - the fact that my child would never be ‘normal.’  I started laughing hysterically – mostly because I still had the bag of tires at all - the evidence, as it were.  The tears started pouring down my face again, but this time it was from laughter.  Gasping for air, I turned at Nick’s tap on my shoulder and an even more concerned look, “Mommy are you OKAY?,” he asked, emphasizing the okay like “can’t you hold yourself together? “ 
After a few minutes, I finally managed to pull myself together, “Sure, honey.  I’m okay.”  And as it turns out, you’re okay. 
I still have the bag of tires.  They are a talisman of acceptance and forgiveness for lost years of missed opportunities at a diagnosis when he was younger.   I’ve often wondered if Nick has memories tied to moments that I cringe remembering – the times I yelled, cried, begged and jostled to find the good behavior hidden inside him; the cruelty of peers who couldn’t accept the awkward, quirky boy; the teachers who asked him to do things he couldn’t do in the different world he lived in and punished him for it; and the men I loved who couldn’t love him.  But he doesn’t seem to harbor those moments in a dark place.  Instead, he has become a resilient, quirky almost adult.   I support him when his tears struggle to fall; I diffuse the anger to release pent up frustration at me or others;  and, I try to soften the disappointments that come with being so close to normal, but not, by teaching him to laugh at the absurdities in life.  Like finding a bag of long forgotten tires and laughing through the tears. 

 

 

I didn’t think it would hurt so much to say goodbye to my childhood home.

I haven’t lived there in a very long time – a decade or so – yet I’m sad to see it go

Memories of basketball in the backyard, wrestling with my brothers and crying over boys

Talking on the phone - the phone cord stretched from the kitchen to the hall to the living room couch where I sat

Slamming my brother’s finger in the front door – or did he pull it shut?  We’ll never know.

Dressing in a rubber suit to shovel snow and ice off the back patio – while my dad fought the flu

Chasing our new puppy around the backyard

Saying goodbye over our family dog’s grave

Smiling for graduation pictures

Smiling for wedding photos one, two..three times 

Crying on the front porch the night before I left for college

Crying in my room the night of my first breakup

Sitting in the kitchen while my parents told me about my grandfather dying, my grandmother dying, my uncle and aunt….

Being sent to my room….more than a few times

Dancing like a mad woman to music in my room 

Finding a cabbage patch doll in the closet – left by Santa

Teaching my little brother in our basement classroom

My parents kissing all of the time and fighting some of the time

Watching them hold their new grandbabies

Food.  So much food

Love.  So much love

So many precious memories…

The house may belong to someone else …but the memories will be ours forever.

 

I know you're too big for the baby swing, but let's use it just for today, 

I know you can do it by yourself, but let Mommy help you anyway.

 

I know you're not a baby anymore, but sweetheart, it's Mommy who just isn't ready to let you go...

 

 Maybe, if I hold you a little tighter, you'll stay my baby forever...

 

Or maybe, I can hold those memories tight, and watch you soar.

It’s a reoccurring nightmare. 

I’m running to class, papers and textbooks falling from my overloaded arms.   The syllabus I just reprinted is nowhere to be found.  How did it happen?  I’ve missed weeks of a class I somehow forgot about.  If I can just find the classroom…215? 210?  Where is it?  I won’t graduate, I’ll be expelled.  I’m a failure.

I’m sure this dream is more about the hectic, stress-filled life I’ve led these last few years than about my work habits.  In truth, I’ve had this dream since high school and couldn’t say if I ever stopped having it.  I guess I’m juggling and dropping the ball, somewhere, everywhere.  As I click around on my new online tab, it replays like a daydream.  Online learning has come so far, yet there are useless tabs with nothing behind them, there are empty bins and the assignments tab only holds a portion of what is expected of me.  It is like searching through the racks of a discount store.  I have to click around from tab to tab to see if there are assignments buried somewhere else. 

I’m a student again, and the dream makes sense… but this time it isn’t my parent’s money.  It’s my family money and it is money we could be using for other things.  Important things.  Things for my child.

I’m scared I’m going to fail.  I’m frightened I’m wasting my time and energy on something I won’t be able to complete.  What if I forget about a class, an assignment, can’t finish 90 pages of reading in two days?

What if I fail?

What then?

Last night, Brian was watching pre-season football when Andrew asked what they were doing on tv.  The conversation got much more interesting from there:

Brian:  Football, buddy!  Aren't you excited to watch football with Daddy this year?

Andrew: Yeah! (not convinced)

Me: What is your favorite sport, Drew?

Andrew: Baseball ( me: sigh - much safer sport).  I don't have a football.

Me: Yes you do!  You have two or three of them!

Andrew: No, I don't, Mommy.  We have to go buy one.  Tomorrow.  We'll go to the store.

Me:  Do you have money to buy a football?

Andrew: No.  We can get some.

Brian: (intrigued) Where do we get money from, Andrew?

Andrew: The tv.  It is in there.

Me: Really?  Should I look for some, now?

Andrew: -laughs - Yes!

Me: - Looking behind tv - nope, nothing.

Andrew: Oh, I know! 

He then proceeded to pull Brian's shirt up over his head and dig in his belly button.  Apparently, that is where we get money from.  Poor daddy!  He works 2 jobs only to get the money shoved into his navel.

 

1 year ago my son didn't speak.

8 months ago he was wrongly diagnosed with a learning disorder

6 months ago his diagnosis was downgraded but still incorrect

2 months ago he couldn't get the words out around peers

1 month ago he said strange sentence fragments around peers - usually not in the appropriate context

Today this conversation was overheard between him and his friend, Garrett.

G:  "Hi Andrew!"

A:  "Hi Garrett!"

G:  "What are you doing?"

A:  "I'm playing with this truck. Do you want to play with me?"

G:  "Sure!"

 

You know that happy dance reserved for when you realize you've fallen in love or have won the lottery? 

 I'm doing it right now. 

 

 

 

I'm getting amphibious with my bad self!

 

I'm all about exercise trends.  No, not diet trends....those never work.  Exercise trends usually DO work AND they provide a break from the same old, same old.  Back in January I shed 26 pounds in the gym with the treadmill and elliptical machine and weight training. I HATE weight training. Then I had trouble getting on the machines due to other early birds wanting to work out.  So I began swimming a few days a week.  I didn't realize how much I had missed the long strides, natural stretching, and relaxation it gave me.  But, it didn't do enough toning so I had to use it with the weights and cardio. 

Then, we went to visit family and I sprained my ankle.  BADLY.  AGAIN.  In college, I had twisted my foot over my ankle joint and it took months to heal.  So, I did it again just to keep life interesting and three weeks later, I'm still not ready for cardio. 

My hairdresser first mentioned Aqua Jogging to me and said she lost 25 pounds doing it.  I googled it and found many other success stories including many serious athletes who use it to train for marathons.  Many of them started it when they injured themselves because it is zero impact and the water actually helps the muscles heal.

So, I've aqua jogged every morning this week in our indoor community pool.  I go at 5:00 a.m. and have the place entirely to myself.  The belt around my middle keeps my head and neck above water and my feet off the pool floor.  The weights are just foam but they provide resistance forward and backward to work my arms both directions.  So far, I feel great!  My legs and arms are tingly for hours after I work out and I already feel like my energy is returning.

I've decided not to weigh myself this go around because it distracts me and water workouts can make your water weight vary.  Instead, my jeans will tell me how I'm doing!

Andrew's birthday weekend started off on Friday afternoon, when I brought cupcakes to school.  I don't have any photos to post from it though, because I had to give out the cupcakes with gloves on and well, it didn't make for easy access to the camera in my purse.  I did take this one at home Friday night when Andrew got his hands on a special cupcake I bought just for him.

 

Saturday was exciting as Andrew and I loaded ourselves into the car and traveled to Oak Island Airport for the Big Toy Day.

There was a real version of every little boy's favorite sandbox toys.  There were helicopters, airplanes, cement trucks, firetrucks, race cars, tractor trailers, farm machinery, and construction equipment.  Andrew was in heaven.

 

 

The kids were even allowed to sit in many of the vehicles.

 

 

Saturday night Andrew hung out with his Aunt Jenny and Uncle Wells who aren't family but are very close friends.  They enjoyed some rides at the beach while Mommy and Daddy attended a friend's wedding.

 

Sunday was the day of the big Par-tay.  Andrew was very excited when the decorations starting going up.  He couldn't understand why we were tying balloons to doors and fences and chairs, but it looked great!  We set up stations along the yard.  Mini-golf, t-ball, sandbox, playset, and bouncy room.  The bouncy room was a huge hit!

 

This little guy at the bottom of the photo is little Jackson.  He's a year younger than Andrew and was one of the youngest at the party.  By the end, he was in there with the other crazy kiddos!

 

(Check out Mr. sweaty pants!)

We waited until the other kids left before opening gifts.  This age is difficult for explaining that the present is Andrew's!

He had almost forgotten about them and was delighted to rip into the paper after everyone had gone home.

 

Happy Birthday Andrew!

I was talking to one of my mentors today on campus and we wandered onto the topic of where my passion for pre-k education comes from.  I realized I had never told her about Andrew's story...so I started with the bombshell autism diagnosis.  Just as her smile began to convulse into an apologic frown I informed her that he doesn't have it and launched into the last 2 months of enlightenment, improvements, and validation from Dr. Camarata.

Her eyes filled as she confessed her son, now in his 30s with children of his own, had the same story as a child.  She and her older daugter babied him and as a result, he learned to speak late because his needs were all provided.  We ended up standing amongst other colleages in a tight embrace...two women with 30 years between us, and one very common experience. 

Too many mothers know how we feel.  We're given the wrong diagnosis and then, months later find out someone goofed, or worse...no one ever tells them.  She only learned her son was ok after years of private school.  She told me that he once overheard her apologizing to her daughter for all the attention he needed, saying he was different and needed more help.  She still never spoke with him about it all, and I encouraged her to do it.  His kids are very young and if they end up in Early Intervention...at least she might be able to save him the heartache by telling him how he was a late talker and his kids could be too. 

I thought about our conversation all day and vowed to share this all with Andrew, when he's old enough to understand.  I'm planning to turn my blog into a book for him so he can see what we went through and how he was able to rise above it all and achieve as much as he has. 

This week at school was his best ever.  He listened well, used nice hands and participated beautifully.  Best of all, he had fun.  We're getting there and I couldn't be more proud of my little man.  So smart, so strong, so confident.  I'm learning from him every day.

 

Imagine you bought a sweater. It was the most beautiful thing you've ever seen. You wear it every day and everyone compliments you on it. Then one day, someone says they see a spot on it. You look and it isn't there. Then some others mention it. Again, you fail to see what they are talking about because you see the pattern in the sweater and it is the same as when you bought it. You are frustrated and now you don't look at the sweater the same way. In fact, you can't look at it without spotting potential flaws.

Now imagine the spot was never there.

Maybe this is a poor analogy but it is the only way I can think of explaining my emotions right now. Andrew doesn't have autism. That's what one of the top 10 experts in developmental disabilities in the nation told me on the phone. Now, she didn't assess him. She just took my information and his test scores and then asked questions that pegged him 100%. She knew his strengths and weaknesses and about his musicality and his fascinations without ever meeting him.  She knows this because she's met hundreds of children just like him.  Late Talkers.

Mary Camarata at Vanderbilt University is part of what is called the Late Talker's Group. They believe many autism cases are just kids developing at a different pace.  These kids often rebound and catch up to their peers overnight when they are ready.

Then she tells me we don't need to go to visit them in Nashville because, although she is pretty sure he was a Late Talker, his scores show he is coming out of it and will be getting himself up to speed.  She highly doubts autism of any kind and thinks our speech therapy and home therapies are clearly working. Our biggest issues are helping him overcome his frustration with speech and become better at using it with peers.  Her phone consult saved us $700 on the evaluation plus travel and lodging...she isn't in this for the money.  She and her husband care about these kids.

I hung up the phone and felt like 500 lbs had been lifted off of my back and for the first time in 18 months I could look at my son as a normal child. The diagnoses really changes the way you see your own kid and I think that is the most dangerous part of it all.

How can they function as a healthy child when we see them (and tell them) there is something wrong with them?  If only these early intervention people could see what they do to families....maybe they would label less and just help these kids get where they are going.

So, while I never stopped loving my sweater (more than life itself)...I can take more time to just enjoy it now...because there isn't any spot...it's perfect just as I always knew it was.