Sunday, September 16, 2012

The New Normal, part II

As Ezra is currently hiding under the table, gagging and sobbing at the mere thought of eating a single bite of broccoli cheddar soup, while also currently throwing a massive tantrum at his impending haircut tonight, I'm reminded, once again, of the very real presence of the Autism Spectrum in my life.  Ezra has always been...different.  Pre-diagnosis, post-diagnosis...all of it.  He's always been quirky.  But, I'm getting ahead of myself.  Let's start at beginning...

Ezra came into this world a fairly difficult infant.  He had food allergies and severe reflux and was just overly-sensitive about most things (I mean...what infant do you know that's scared of the dark?).  He screamed a lot...and I mean a lot. After the first 6 months we had his different ailments all diagnosed and things started to calm down a bit.  He was still fussy and sensitive, but at least we weren't dealing with physical ailments on top of an already cranky baby.

As Ezra grew he remained...tempermental.  I spent his entire toddlerhood and preschool years begging Ezra to just be tolerant of the people surrounding him.  He's always been my little raincloud.  I felt like I was constantly apologizing for him to playmates and cousins...making endless excuses about him being tired, having a cold, being out of sorts, etc. etc. etc.

Really, Ezra was just...

difficult.

In so many ways Ezra has always been inflexible about so many things.  He's extremely particular about the clothes he wears and the food he eats. Ezra is, hands down, the pickiest kid I know.  I'm sure there are kids out there that are more-so...but he's pretty hard-core about it.  As Ezra's psychologist and I joked, if we could only re-direct that passion towards something useful, like world peace, we'd be all set.  He's rigid about a million different rules...he refuses to wear buttons on his shirts or anything remotely constricting (Sunday is a much-fought-for exception; years after the first battle was fought, Ezra finally wears button-down shirts and occasionally a tie every Sabbath with only minor amounts of blood-loss).  He'll often refuse clothing simply because it's "too stripey" or some other random reason.  Combing his hair is a daily battle with much screeching about hurting scalps and it not being "flat enough" (heaven forbid I do anything except a comb-over...I swear the boy was born with a calculator in his pocket and a beeper clipped to his pants).  There's just a million little routines and rules that direct Ezra's world...from mealtime to bedtime and everything in between.  When the chaotic world that he resides in doesn't fit his never-ending rules, all hell breaks loose and major tantrums ensue.

Most of those rules, though, we've gotten used to.  We've learned to compromise and get along.  What really pushed me over the edge into getting him tested was his social issues.  At first glance (and second...and really even third and fourth glances) Ezra seems perfectly normal.  He has friends who like him.  He has siblings who adore him and who he loves back.  He talks and plays with his schoolmates.  He does his work at school and doesn't get into any trouble.  His teachers have all loved him (no one complains about the kid who keeps his head down and colors quietly).  He's a wonderful little boy...but he's just not normal, in the traditional sense.  One of my first big vibrant red flags was Ezra's lack of natural empathy.  His sister would fall down and bloody her knee and he'd barely bat an eye, walk away, come inside and start rambling about legos to me.  He isn't a mean boy, he just doesn't really feel all that sorry for people.  He lacks the ability to see things from another person's perspective.  Ezra has an extreme sense of justice and doesn't hesitate to act as judge, jury, and jailor.  He loves his friends, but doesn't hesitate to wander off and play by himself frequently during playdates.  It's not that he doesn't like their company...he's just content on his own.  The list keeps going...he has trouble making eye contact, has a hard time with extended back-and-forth conversation, will go on and on about his latest obsessions, doesn't absorb social information about his friends (their likes and dislikes, etc), has extreme reactions to minor daily hiccups, and doesn't really understand figurative speech all that well.

So

we got him tested.

and he was placed on the autism spectrum.

His official diagnosis is Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS).  PDD-NOS is the diagnosis used when they're not quite sure exactly where one fits on the Autism Spectrum, but they know one still belongs on it.  As Ezra's psychologist put it, Ezra is borderline Aspergers, but he doesn't show enough physical traits (hand-flapping, head bobbing, etc) to fully qualify him for an Asperger Syndrome diagnoses.  He still shows all of the other criteria one would typically assign to Aspergers, however.

I've had mixed feelings about Ezra's diagnosis.  There's been sadness and joy.  I've felt overwhelmed at the thought of the work ahead.  I felt guilty for even putting my foot on the Autism Spectrum when my load is so much lighter than so many others who are dealing with Autism Spectrum Disorders (ASD).  I've worried and worried and worried about how the world around him will react to his quirks as he grows up.

Overall, though, I've mostly just felt

relief.

You see, for years I wondered if it was all in my head.  I didn't know if my parenting had made Ezra so temperamental.  I didn't know how to explain to people why my son was throwing a 45 minute fit on the floor because they were serving pancakes instead of waffles at the church Christmas Breakfast.  I didn't know what I should do when Ezra refused to deviate from the expected daily routine.  I didn't know if it was all my fault and if I was making him worse.

His ASD gave me the freedom to stop blaming myself.  It also gave me the freedom to stop blaming Ezra.

One of the biggest reasons I got Ezra tested was because I could tell I was beginning to resent him.  He could be so hard to handle and I hated the way he consumed all of my attention.  He's one of four kids and I simply could not give him that much of myself.  There was only so much to go around.

Having an ASD diagnosis helped me realize the good that comes with the bad.  He's a wonderful rule-follower.  If Ezra and I agree on a list of chores, nine times out of ten he'll do them.  He almost never lies.  In fact, he can't fathom how anyone else could lie to him (ex: he insists, to the death, that his cousin Gavin got stitches in his hand after being bit by a snake.  Embellishment is simply not possible).  When he does try his unsteady hand at telling an untruth, he almost immediately confesses.  He's incredible at math.  He just started first grade and already does fairly large addition and subtraction in his head and basic multiplication and division.  He has such a natural mechanical mind too.  He has a truly amazing memory.  He's just such a smart, good little boy.

Our relationship has come so, so far in the last 6 months, since we started the whole diagnosis process last Spring.  I see Ezra in a whole new light and just understand him so much better.  I now realize why he act the way he does and why he says the things he says.  It also helps me to better understand why we had Ezra and our other children when we did.  Ezra's psychologist and I have talked about how beneficial it's been for him to grow up with so many other children and in the chaos that comes with them.  It's forced Ezra from very early on in his life (from 19 months on, to be exact) to have to cope, to some degree, with other children.  If he was all on his lonesome then who would step on his lego creations and steal the last cookie?  That thought has given me a lot of comfort when the question has crossed my mind, as I'm sure it does every mother of a brood, whether I'm hurting or helping my children by splitting my attention in so many ways.  I've often been plagued with the What If wonders...what if we'd had our children later?  what if we'd spaced them farther apart?  what if...

Now I know that the Lord had us do what we did for a reason.  We did it, in part, for Ezra.

Ezra's diagnosis has been such a blessing to me.  When I realized what was going on inside of that bright little head of his, I realized that Ezra is the way he is the way he is.  My job, as his mother, is to help him learn to navigate things from his unique point of view.  I can help him adapt to the world around him, with all of its inevitable surprises, but I cannot fix my child.

You see...

he's
not
broken.

He's just Ezra.

18 comments:

Jeremy and Kelly said...

This was a wonderful and beautiful read. Thank you for sharing, and I hope that you get the opportunity to learn what techniques and actions can help to make your entire household a little easier to manage :)

Tyler said...

Love Love LOve! Im am so happy that the diagnosis has helped you so much! I wonder about Kevin to this day, and him and Ezra have so much in common! The non-empathy thing.. i know exactly what you are saying! but the Lying.. Im not sure my boy knows how to tell the truth... his stories are so real to him! Anyways, I applaud you and your efforts to help him. You are one great mommy! Keep up the good work!

Sheffer's said...

Once again I'm so very grateful you reached out your hand of friendship to me 3-ish years ago. For you have an Ezra, and I have a Caleb and they are special and hard at the same time. I'm proud if you for fighting to get the answers you needed. And thank you so much for helping me to understand my Caleb. (He's already outpacing Logan in math after 2 wks of semi-instruction on my part.)

Jennae said...

I love that Ezra. So much so my sisters know who his and how great he is too.

Laura Weight said...

Whitney!!! What a very open and beautiful post. Just remember that you are such an awesome mom! My sister said that when her son was diagnosed with autism, she said the same thing: relief. All she wanted to know what it was. Some days are hard, but she has really faced the challenges head on and has become an wonderful mother, and advocate for her son. Erza is such a lucky boy to have such a loving and understanding mother, who loves who he is: Ezra! Know that you are not alone in this :) You are such a wonderful mom and I know that you will do everything you can and know how to help him become the best person ever! Thank you for such a beautiful, honest post my dear ILL friend!

Jenny said...

All I can say is that I love Ezra. He is also an answer to prayer for my own son - such a great friend for Liam. I'm so happy to hear you have found some answers to your prayers as his mother - I know Heavenly Father will continue to guide you as he grows up. That kid is going to knock the socks off his educators - he is a smarty pants!

Kristin Hanson said...

People are so afraid of labels these days, but honestly, a "label" like a professional diagnosis is such a blessing! Your family's quality of life will be so much better now that you know why Ezra reacts the way he does, what he can and can't understand, and how to handle his particular personality. It's such a blessing to live in a time where such children are loved and praised, instead of institutionalized or forced to conform, with devastating, long lasting effects.

It's so crazy for me to think of that sweet, tow headed baby as a big boy, but it doesn't surprise me in the slightest that he's such a smarty pants. You could always see the wheels spinning in that one. He is so blessed to have you as a mother and Spencer as a father - each of you can understand a part of the way his mind works, and meet his needs.

Tara McCausland said...

Oh, my dear Whitney. This was a beautiful post - honest and thoughtful. You are in our thoughts and prayers as you adjust to your "new normal.":) You're a great lady!! Lots of love to all of you!

Stephanie Bishop said...

I related so well to the sentiment you shared concerning "did my parenting create these challenges for this child?" The day I was able to answer NO to this question for my children led to great comfort (and continues so) Our job is to manage personalities in our children, not change them! Ezra will know how to thrive in his own skin with his proud Mama and Papa by his side! I challenge you to look forward to the day Ezra scores a PERFECT SCORE on his ACT or is crowned National Merit Scholar!!!! That might ease the burden of his tantrums!

Felicia said...

Loved your post. It was a beautiful tribute to both you and your son and the journey you've had together!

Melanie said...

Love this- you are an incredible mom. Ezra is blessed to have such a fantastic fighter in his corner for life!

Alabama Apples said...

Oh, how I love my Ez!!! He is perfectly Ezra-ness. :) Give that boy a big ol' love from his Auntie Lib.

Isn't it a beautiful tender mercy of the Lord to see His hand in decisions we make. Love you, little sis.

PatShala said...

Thank you so much for sharing Ezra's story. I really appreciate you opening up and explaining all of this. It is helpful to hear what other parents go through. We have had a hard time with McKay and it is nice to learn from others. You are an amazing momma!

Kristyn said...

I agree with everything people said in this and thd last post. If there's something I've learned it's that we're all off better if we speak out and support each other rather than hold things in and suffer alone. I know sooooo many people who have within just thd last few years gone through what you, and also Ezra, are going through. It's tough, and not easy, and it's a specific problem that will only make yoh and Ezea stronger. I love you! So glad you are doing better, and do glad Ezra got diagnosed - and bonus to a diagnosis is there can be better help and understanding!! Wonderful!

PS Zoloft helped me a TON as well. I only wish I would have discovered it earlier. Now I'm on ignacia, a homeopathic medicine, and a multi b complex, in case you ever wanted to go the homeopathic route. Its been equally helpful. Love you Whit!

holyoak said...

We love our Ezra! He's Granddad's little man. The great thing about having these diagnoses figured out nowadays is that treatment protocols can be instituted earlier in life and progress made to really improve life and learning while they are children. It was wise to get him tested; it will make a big difference in his development. I agree, the involvement of Heaven in your lives is evident. You hit a home run baby doll. Literally!

Caldwell Family said...

I love this. I've always thought Ezra had such an amazing mind. Though we haven't spent tons of time with you guys, I did notice that. I've also had many "what if..." moments when it comes to the spacing and number of children I have a hope to have. It's hard to know exactly what's right, but the Lord definitly knows what's going on. Thanks and good luck on your journey with him. It may be difficult at times, but I'm sure it will also be rewarding.

sharon said...

way to make me tear up at work! LOl
Such a good post about Ezra. One looks at their child in a whole new light when they finally know how to handle them. We still wonder a lot about D, but each year of his life we learn more, and he's 24. :)

We've often told Aubrey she had to have a brother like D to know how to handle her own children. You are a good mother Whit, and Your little Ezra is a special little guy with so many possibilities open up to him. One day he will bless your name on high for the fine example you and Spencer have set for him.

Smiley Family said...

Great post Whitney! I love your openness and honesty. Ezra is a lucky boy to have a mom like you.