Being Mindful of Big Brother's needs too

Our older son, Ash, is such an amazing kid, and Big Brother Extraordinaire to Eli. 

At age 14, Ash is five years older, typically-developing, hilarious & fun, .... an many a person has told me, "Ash has an "Old Soul".  I totally agree.  By "old soul" I mean that he's wise beyond his years, he's gentlemanly, and ... I guess I find him to be quite noble in a day and age when you don't see a lot of nobility displaying itself in people's actions.

Ash and Eli outside the Bubba Gump Shrimp Co., with Forrest's shoes! 

 

I'd like to think some of these characteristics are things we've helped him to learn by being his parents.  But if I'm downright honest with myself, I have to admit that a lot of it just comes naturally to Ash.  He naturally has a strong sense of right and wrong, a loving, giving heart, and a passion to protect and defend others, especially if he doesn't feel they can defend themselves.  He has a kindness that just rolls off of him and puts others at ease. 

Of course, he makes mistakes like all kids (and many adults!) but I've never seen anyone so humbly willing to accept his consequences without much complaint.  I've cut short many a "punishment" because he's accepted it so gracefully and without whining that I end up feeling guilty for making it continue!  He's far more mature than many of his peers, and he always has been. Even as a young child, he saw the world with older eyes than others children his age.   

When I look at our son and really see the person he is, I'm overwhelmed by how intensely proud I am to be Ash's mother.  I consider it a great blessing and honor that God gave me this boy and I give praise for Ash more than he knows.

I guess that's why when Ash does struggle with right choices, we're harder on him than is probably fair. It always catches me by surprise, because it's so out of character for him! 

Today I'm overwhelmed with feelings of guilt and remorse for him. I sometimes forget the fact that he, too, is making a lot of sacrifices when it comes to having a brother who needs special consideration.  I'm reminded that we are not always fair in our expectations of Ash, of how much he has endured in frustration over the years, as well as how much he gives to Eli on a daily basis. 

I watched Ash struggle with a situation this weekend in whether or not to share something with Eli.  To me, the answer was quite clear at the time.  Eli pretty much always chooses to share things with Ash, so Ash should do the same thing.  Right?

After much deliberation, Ash made the good choice and did share the item with his brother.  I could tell he felt good about the decision, so it surprised me that, later when I praised him for his decision, his response to me was almost angry.

 "I know Eli chooses to share most things with me, Mom, but you know perfectly well that if he decided not to, you wouldn't make him.  For once...just once.... I wanted something to be just mine and not have to share it.  Maybe that is selfish of me, and yes, I'm glad I did share with him - you're right, I do feel better that I did - but it's not fair that I don't have the right to choose like he does."

Eli adores his big brother, Ash!

He's right.  God love him, he is so right.

I instantly felt bad.  I know very well that Ash makes it so easy on us to spend a lot of time focusing on Eli's needs.  He even helps us and is an extremely valuable part of our team!  He gives so much love and attention to Eli, spending time with him, helping him with the math homework that I can't help with, allowing Eli to have sleepovers in his room, playing with Eli, laughing and joking with him.... Eli absolutely adores him!  What kid wouldn't love to have, or benefit from, a big brother or sister spending that much time and attention with/on him?? Ash is so mature about it, and my heart hurts today because we completely take him for granted!

He's right about us not forcing Eli to share if he doesn't want to, and quite often it is because Eli is so generous that it's a rare occasion that he chooses not to...so when that occasion comes, we don't insist. 

Ash is also right about us pretty much forcing him to share nearly everything with his brother, even when he's against it.  It is our doing this that has caused Ash to increase the number of times that he's opposed to sharing things.  He's fighting for his right to choose!  As parents, we've made this situation ourselves, and Ash was awesome enough to point it out to me.

The rules are not always the same, and Ash has a right to be resentful about that.  Granted, every kid is different and every kid is not always going to be given the same consideration every single time.  That's just a part of family life!  But I feel Ash has a very valid point in this matter.  I'm going to have to make myself stop and think things through next time. 

I never want Ash to feel that his needs are not as important.  Like I said before, he makes it so easy on us and he's such an amazing kid....the last thing I want to do is make him feel as if he isn't as important as his brother.  Nor do I expect him to sacrifice everything for the sake of his brother.  He deserves the right to choose, to have a sense of SELF and propriety about "his stuff", and his room.  It's important for Eli, as well, to learn that he's not always going to get his way in life, something we work on with him in all other aspects of his world, but for some reason - when it comes to Ash -- the expectations have been different.  This will change now.  Ash has once again astounded me with his maturity and wisdom.

Be mindful of the needs and feelings of your typically-developing children as well.  If you've been blessed with an awesome kid like Ash, it's even more imperative that you stop to consider them, as they make our lives so much simpler.  Thank you, Ash, for your amazing honesty.  Never stop!  And never think Dad and I don't care or don't hear you.  We're all in this together and we're going to keep learning new things.  You are such a blessing to Dad and me and to Eli.  Keep on being You!

Full Moon's A-risin'

It's surprising to me how much the lunar cycle effects Eli.  The week before the New Moon, and the week before the Full moon are so challenging for him. 

His reactions and behaviors last night had me rushing to check the "Full Moon Chart for 2012" that I keep on hand.  Sure enough, we're in the week preceding the full moon for the month of March.  It's going to hit on the 8th. 

Although Eli's newest medication has been very helpful in helping him through these lunar cycles, I suspect we're in for a doozy of a reaction this time around.

Math homework was too much for his mind last night, so instead of working steadily to get it done, he spent a great deal of time rolling around on the floor complaining about it instead, proclaiming it "boooooring" and "stoooooopid".  It took him a while to get it completed since he spent more time writhing in the anguished throes of drama than he spent doing the actual work....but eventually, he slammed his book shut and announced, "I'm getting on the computer now!" in as loud a voice as he could muster. 

Full Moon Dates 2012

Year Month Day Time Day of Week 2012 Jan 9 07:30 Mon 2012 Feb 7 21:54 Tue 2012 Mar 8 09:39 Thu 2012 Apr 6 19:19 Fri 2012 May 6 03:35 Sun 2012 Jun 4 11:12 Mon 2012 Jul 3 18:52 Tue 2012 Aug 2 03:27 Thu 2012 Aug 31 13:58 Fri 2012 Sep 30 03:19 Sun 2012 Oct 29 19:49 Mon 2012 Nov 28 14:46 Wed 2012 Dec 28 10:21 Fri

Short-tempered, sarcastic and relentless in the verbal zings he was casting toward his brother, I sought out the lunar chart.  Yep.  We may be in for it.  The fact that he yelled at his dad every time Ben began to rock in his recliner, producing a small squeak that most people would be able to block out and ignore, told me that for Eli, it was pure torture.  "Daaaaad!  Geeez!  Stop it!!!!  Quit it!" echoed throughout the living room every time Daddy would absent-mindedly begin to move again.

He refused "burrito" wrapping, but spent a great deal of time yelling out "Bubble!  Ze bubbles!  Buh-buh-buh-bubbly-bubbles" in a baby-talk voice, as if that was comforting to him.  He continued the tendency this morning as well, until I indicated I'd heard quite enough of it.  He can't explain to me why he's latched on to this word recently, or what his motivation is for repeating it incessantly.  If I had to guess, I would say it's the sensation it creates...the feeling it gives his mouth, when he says it.

Textures, noises, the way things feel to him, his levels of impulsiveness, agitation, and energy,... his emotions, his impatience, mood swings.... all of these things are heightened for him right now.  Some agitate...some comfort.  I can't understand how or why, but when I commented a few years ago to a dear friend that I didn't understand why Eli seemed like any typical kid one week, and then the next week he was so different, she asked me if we had ever tracked the cycles of the moon and compared it to his behavior.  We hadn't but began to do so immediately.  See, our dear friend had spent her entire career teaching with developmentally differently-abled children and she knew up close and personal how much the lunar cycles would "mess with" the kids.  She also knew how it  randomly it affected each child, causing different reactions.

We began to pay attention and it was actually fascinating to watch the patterns emerge.  New Moon brought increased emotional responses.  Full moon brought that along with increased activity and loss of focus and control. 

Do typically-developing children go through such drastic changes as well??  I have to wonder?  I know Ash has been less patient with Eli the past few days than he normally is, but that could be due to the insults with which Eli's been pummeling him. 

How does that old moon make such an impact on one little boy?  I can't explain the how or the why.  All I know is that when Eli's agitation begins to present itself, I check the chart and we all nod at each other and say, "Oooooh....Full Moon's comin'..." and that explains everything!

Celebrating the boy

If I do anything exceptionally well, it's second-guess and doubt myself.  About 4:30 a.m. this morning I woke up and this blog was instantly on my mind.  I was suddenly terrified that the blog was the wrong thing to do.  Was I wrong to put our experiences and life lessons out there for all the world to see?  Was it fair to hang us all out there in the wind, especially Eli, for scrutiny?  What exactly was my motivation?

I laid there feeling much like I did the morning I described in the previous post when I was panicking about allowing them to "label" our child PDD-NOS.  What had I done by starting this blog?  Was I being unfair to Eli? Had I exposed him in ways that were wrong?

I prayed to God for guidance, handed the anxiety up to Him and then got up to think it through.  My motivation is not intended to expose my child, I realized, but to celebrate him and - more importantly - to vindicate him!  I want to explain him so people will understand him, and other children like him, and ACCEPT him!  Secondly, I want to maybe bring hope to other parents who have an child who is uniquely gifted and challenged all in the same mind.

How many times over the years has our older son, Ash, come home and told us stories about the kids in his classes who are constantly in trouble?  Story-of-the-day about kids who are consistent behavior problems and give the teacher's fits?  I've never seen those kids, but know them by name and hear the stories my son tells me about their latest antics. And I know how my own thoughts about these kids have historically been...they are dark thoughts, judgmental thoughts....unfair and uninformed thoughts.  I don't know these kids, the lives they lead, the challenges they face.  How can I possibly form an opinion, based solely on the child's behavior that day?

How many other children have gone home and sat around their dinner tables over the years and told Eli stories, I wonder?  Before the "new" diagnosis was determined and before the medications were adjusted to better work for him (just this school year), how many children would share with their families the Eli story-of-the-day; of how he meowed all through science class one day and kept everyone soooo distracted until he was removed from the classroom to the hallway.  How many parents have thought dark, judgmental thoughts about my precious son who brings so much joy into my life, who makes me laugh effortlessly, and who is such a brilliant reader and so smart he can play chess and most other "strategy" games so well that he is a force to be reckoned with?!

How many teachers went home at the end of the day exhausted beyond reason because our child gave them such a difficult day?  Their jobs are difficult enough without having to deal with "that kid" in their classrooms.  Don't get me wrong, we've been so blessed with teachers who have been compassionate and willing to work with E... but the energy drain they must have experienced ... I would not blame them for their dark thoughts at times.

How many people watched his ill behavior as a toddler and looked at Ben and I as pathetic excuses for parents?  I actually was postured once by a woman who tried to explain to me the "levels of behavioral expectations in public", as if I might not be aware how disruptive my three year old was actually being.  This child, who would not be held, and screamed wildly if I would try to remove him from a location he was not ready to leave, would have shattered glass and eardrums alike had I not allowed him to wriggle, squirm and move about within the small space we were confined to at the time.  She had no idea the scene I'd spared her as I spent the entire time keeping him in check as best as I could.  At that point I was exhausted.... I believe I pretty much blew her off, but her posturing hurt deeply.

These people are not bad or even wrong!  I totally understand their lines of thinking....they just don't understand!  They see this boy on and off, here an there....one time he seems like any typical kid, and the next time he's talking in baby-talk even though he's nearly 10 years old.  One time he'll be able to sit and listen, and the next he's distracted and disrupting others.  This child who does so well for his current teachers (once he get's past testing their limits), but can bring a substitute teacher to her knees in the span of a few hours.  Our son who gets fixated on a word and repeats it for days...

Lately the word is "bubbles".  No idea.  He just keeps saying it intermittently the last few days in baby talk, over and over and over.  Soon it will disappear a new word will take its place. It's what he does.

See we know these things about Eli.  We know the attachment he has to his stuffed monkey and the drama that can ensue if monkey is MIA or unavailable when he has a longing for him.  We know when he starts the rub-rub-rubbing on the legs of his jeans, over and over, that he's not doing anything inappropriate...he's just currently enthralled with the textures he feeling in the denim and he's hyper-focusing on the sensations at the moment because that's what has his attention.

We, his family, know this.  We're safe.  We love him despite the eccentricities he presents and displays.  They're all apart of Eli.  But what about the rest of the world?  What does the rest of the world see when they observe our son in the midst of "a behavior"?  I share them here in order for others to learn, to begin to understand and recognize, in Eli and hopefully in all people in other areas of their lives.... those people who they once thought of as "weird" may have a lot more to them than just the current behavior they are displaying.  Maybe this blog will serve to vindicate all of them, and we'll all dig deep to find tolerance and compassion and understanding we never knew we had.

Doubts

Last October, just a few days after we received Eli's PDD-NOS diagnosis, our family left to go on vacation in the Great Smoky Mountains.  It was a stunning time of year, with the most vibrant leaves, fantastic weather, and it was magnificent to just pull the kids out of school for a week and walk away from all of life's stressors for some much needed down-time.  We had rented a beautiful cabin in the mountains for the week and we were all so excited just to get away and be together as a family!

Despite our glorious location and my attempts to put the last few weeks behind me, my subconcious wasn't having any part of it.  Our second or third night there I had a terrible dream.  In the dream our older son, Ash, was trying to apologize, calm and comfort Eli, who was hysterically screaming and crying.  Ash kept saying, "I'm sorry Buddy, I didn't mean to!  I didn't mean to!" But dream-Eli would not be consoled.  He kept screaming, "How could you!?  HOW COULD YOU?!" over and over.... and suddenly.... I realized that Eli was screaming at ME!  Waves of horror washed over me and I woke up with his accusations still ringing in my ear. 

How COULD you let them diagnose me with an ASD, Mom?!  I'm in the National Registry now, and this affects my whole life and what if it's wrong and this will never go away now that it's been done and are you sure it's accurate?? YOU LET THEM!!!  HOW COULD YOU?!

That was the end of sleep for that night.  It was around three in the morning and the entire cabin was silent.  I was shaken and about half nauseous....what had I done?!  I had allowed them to slap a LABEL on my child that would never, ever go away!  What had I done to him?  How COULD I have let them ruin the whole rest of his life by calling him "Autistic"?!  What kind of mother was I?  I left our bed and went elsewhere in the cabin to get myself calmed down, so I wouldn't disturb Ben's sleep.  I was in utter tears and still couldn't get dream-Eli's screams out of my head.  How could you!?

Unless you have been there yourself, it's very difficult to understand the emotional trauma a parent goes through when you're told that your beloved child has a problem that you are unable to fix.  I'm sure all parents react differently.  My own mental anguish ran along the lines of guilt, doubt, self-blame, fear, and an overwhelming sense of loss for "future, adult Eli".  What did I do wrong during my pregnancy that caused this?  Am I actually to blame?  For the longest time, when E was a toddler, I was absolutely certain that it was my inability to breastfeed him that had caused his lack of interest in being held or cuddled, which of course had led to the severe behavior problems he displayed regularly.  Afterall, I'd been able to breastfeed Ash - look how close we were, how snuggly he'd been as a little guy, and how well adjusted he was now!  A very wise nurse early in our evaluation processes rolled her eyes at me in gentle mocking and said, "You sound like most mothers....trying to blame yourself for this situation.  But I'm gonna tell ya Girl.... YOU. DIDN'T. DO. THIS."  It was the first time someone had given me permission to believe that, and I'll never forget it.

A few hours after I'd been horrified awake, I crawled back into bed and sobbed in my husbands arms, told him about the dream and all my fears and doubts about the diagnosis we'd been handed a few days ago, and just accepted without question.  Shouldn't we have gotten second and third opinions?  Had we totally ruined Eli's life by allowing them to label him?  What had we done?!!  It was the first time I'd really verbalized anything about all the stuff that had been in my head since we'd received the diagnosis.  I guess it had taken me that long to let it sink in.

You have to understand something about my husband, Ben.  He's a really calm guy.  He doesn't really get excited.  His rear-end could be on fire and he might say, "Wow.  It's a little warm in here."  He's my rock, my sounding board and my voice of reason when I am no longer capable of keeping myself in check.  He said, "Honey.... have you done any reading about PDD-NOS?"  I admitted I really hadn't...when would I have had time??  We got the evaluation results and then scrambled to get ready to leave town for a week.  There'd been no time for reading, pleasure or otherwise!  Ben advised me to get online and look PDD-NOS up and read.  He assured me he felt confident the diagnosis was right.

That in itself made me feel better, because another thing you need to know about Ben... he is not a sucker.  He doesn't immediately trust something is as it seems unless you can pretty much prove it to him.  If he was feeling confident about this, that brought me down several levels on the panic-meter!

 So I read.  I found several things online that deal with the PDD-NOS by name and began to read about the behaviors associated with it.  I began to read and read, and I felt much better, because every description I found sounded like they were describing Eli himself.  I hadn't ruined my kid's whole life after all. I also realized, as I sat there on the porch of the cabin, wrapped in a blanket in the rocking chair, absorbing everything I could in the chilly autumn dawn.... I hadn't "labeled" him.  Instead we have empowered him! 

Our son is not his diagnosis.  My child is not defined by his diagnosis!  Our son is Eli! He is smart and hilarious and charming and sweet!  He's one of the most generous, kind people I've ever known, with a loving, giving heart.  He is patient, polite (um....most of the time!), helpful, amazingly tolerant and he has a grin that will light a room!  Yes, he has some eccentricities and some unique challenges (especially in the classroom) that may confuse or frustrate those who do not know him.  However, this diagnosis has given all of us the power to meet those challenges head-on.  How he succeeds and overcomes and meets those challenges...those are the things that will define him.

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Snug as a bug in a rug!

I've recently learned that a common technique for calming autistic children down is to wrap them all up "like a burrito" in a blanket.  They enjoy it and it apparently helps them to calm down from sensory overload, from what I've read.  Seeing as I'm not a Dr. and we're just learning all these new things, I'm sure there's a broader explanation for the wrapping technique than that.  However, I'm just blown away by the fact that Eli has already incorporated this technique, naturally, and on his own!

Every weekday morning the routine is the same.  Eli gets up, he sits in Daddy's chair until breakfast is on the table.  He moves to the table, eats, takes his morning meds in whatever order he's designed for himself, and after clearing his breakfast dishes, he then moves to Mommy & Daddy's bed until 6:20 a.m. 

It is here, in our bed each morning, where he has already perfected the "burrito" technique all on his own!  He comes in and burrows down under the covers, often asking for help to make sure all the covers are up  completely over his head.  He's wrapped also in his own soft fleece "snuggie"-type blanket, all coccooned and snug as a bug in a rug! 

What a clever coping strategy he figured out all by himself!  What more appropriate time of day as well, for when would it be the most difficult for him?  He's coming out of sleep, out of a dark, quiet room into the  bright main part of the house, where there is light and music is playing.  It never occurred to me this may be a shock to his system or more than he can handle.  It's not super bright, or super loud, but it's a change for him at that moment.  His meds aren't in his system at that point, because he's just taken them with breakfast, so first thing in the morning is just a raw time for him I suspect. 

I plan to utilize the wrapping technique in the future for times when Eli begins to show signs a meltdown.  I'm just now learning this could be due to sensory overload, as I mentioned before.  The trigger for the meltdown may not even be happening at the moment...it might be the after effects of something that happened hours ago!  These are the things we, as parents, need to know and need to understand in order to help him. All the information is right before us....we just need to know how to interpret and understand it. 

New to the journey - we're learning! 2/29/12

Since receiving a solid diagnosis for our nine year old son, Eli, in October 2011 of PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified, an Austism Spectrum Disorder) -- on top of his previous diagnoses of ADHD, Severe Anxiety, and Tourette Syndrome, I have been flailing around trying to figure out the ultimate question.... What EXACTLY am I supposed to be doing???

There's an ocean of information out there to access...but in order to find what actually applies to your child, you need some guidance.  We are at least an hour and forty-five minutes away from the the Behavioral Clinic, Autism Center in Westerville Ohio (Columbus) where Eli received his eventual diagnosis last fall.  They have amazing resources, but after traveling back and forth to the Center and Children's Hospital all last summer during the evaluations, we knew we could not afford to continue the trek.  There just isn't enough money or sick/vacation time available to utilize their facility.  I sincerely wish we could!

We, of course, made immediate arrangements with the school and we have been extremely blessed with outstanding teachers for Eli's 4th grade year, as well as a Principal and School counselors, psychologists, etc. who are willing to go above and beyond to help Eli succeed.  His most difficult challenges in the classroom were identified and his 504 Plan was developed around that.  It is such a blessing to have a willing team to work with!!!  I cannot thank them enough! 

I also began to search locally, make contact with our local chapter of the Autism Society, talked to a few local contacts.... but I wasn't really feeling informed and connected at all.  It's been entirely overwhelming, and I really didn't know where to turn.

I remember once equating it with being on a rocking ship, while you're going through all the evaluations.  When the diagnosis comes, they say, "Yep, your son has PDD-NOS! Don't worry, there are a lot of resources out there!  Hope you can swim!" and then you're knocked over the side of the ship into this vast sea of information.  "Good Luck!  Let us know if you need anything!!" the professionals all yell from the ship as they wave and drift away.  And then you're floating, searching for something, anything that applies to you and your child and your family.  Sure, there's information everywhere!  As vast as every drop of water that makes up the ocean your floating in, but ... how does it help OUR FAMILY specifically?

After about 4 months, I stumbled across a man's blog on the internet about the daily challenges his family works through with their Austistic 13 year old son.  I read and read and read...I couldn't stop!  I then found another family's blog about their 8 year old son, and I began to recognize some major similarites between their child and our Eli!  I got so caught up reading their blog the other morning, I nearly made myself late for work!

For the first time in a long, long while, I am finding comfort and hope!  I never tire of the encouragement I feel reading the accounts of their daily lives working with their children, exploring & learning from each new challenge they face as a family, learning to recognize triggers, and techniques to combat sensory overload and help their precious guy thru the tough stuff when their little mind go haywire from their day.  Everything THEY go through enlightens, encourages, and educates ME! 

I've already learned a few things that I'll be trying with Eli, and I was astonished to read about one technique that is routinely used with autistic children that Eli himself has already developed as a coping strategy and incorporated it into his daily morning routine, and none of us even realized it!  What a clever boy he is!

In turn, here I am creating my own blog.  Maybe it will help someone else at the beginning of their journey.  Maybe no one else will ever read it, and it will just be my outlet, my documentation of E's progress... because it's really easy to forget just how far he's already come!

So here is our journey through Eli's World ...

(Note: I have linked some of you who I thought may be interested in following this blog for either information, interest, love of Eli, or what have you.  If you do not wish to receive emailed blogposts, please do not hesitate to let me know and I will remove your email.  And I won't be offended at all, I promise!)