Memory problems



Love the ribbon and definition, but the mis-spelled word really bothers me



Imagine yourself being accused of doing something you have no memory at all of doing? 

Picture yourself sitting before peers and authority figures and everyone agrees that you did indeed do this particular deed, there are witnesses all agreeing and telling the same story, but you can't recall the incident happening at all. 

Can you imagine the stress you would feel?  The level of defensiveness you would experience?  The fear and anxiety the accusation would produce?

Our son Eli, who lives his life with PDD-NOS, ADHD, Tourette Syndrome and severe Anxiety, knows first-hand how this experience feels.  His little mind succumbs to impulsive urges quite a bit.  He speaks or acts on a sudden impulse with no forethought...these sudden ideas or words spring to mind and Eli hasn't learned to control them at this point. Or resist them.  A word pops out of his mouth, shocking those around him.  His body physically reacts and responds to an impulse, and he may reach out and do something he should not have done.  He can't explain why he said or did something afterwards...it just "happened".  And he often finds himself dealing with a consequence for doing or saying something completely inappropriate.

If Eli's impulsive act is addressed immediately, he recalls the incident (for the most part...details become hazy, but he knows it did occur) and he's always honest about it.  It might take some coaxing, but he

will usually 'fess up to me about what took place and admit what he did or said.  He can rarely explain why he did it, but he's always upfront about doing it.  We've worked hard on making it safe for him to be honest. 

Eli knows it's always best to tell Mom the truth!  Lying will get you in far worse trouble, so yes, he does admit his mistakes regularly and without a lot of fuss.  We have put into his head over and over and over that EVERYONE makes mistakes, even grown ups -- and grown ups usually make bigger mistakes!  The best thing to do is to admit it, accept the consequence for the action, learn from it, and move forward.  He has embraced this lesson and practices it regularly.

We run into problems, however, when one of Eli's impulsive actions is not addressed immediately.  If he impulsively does or says something, and it's not pointed out to him within a very short time, his memory does not retain it.  His short-memory discards it completely, like it never even happened.

I'll admit it... I used to think he was lying in order to get out owning up to his mistakes.  How many times did we go through the routine? 

Shaking his head, in determined denial, "I didn't do it, mom.  It wasn't me." 

Confused look on his face, "....I don't remember that...???"

Full-blown hysterical crying, "IT WASN'T ME! I NEVER DID THAT! NO NO NO!  I NEVER SAID THAT!"

I think the turning point for me in really understanding and accepting that he was dealing with sincere short-term memory issues was when he began to forget fun things too.  Something positive would occur and if it was brought up days later, he would not be able to recall it taking place.  Sometimes if we described the event very clearly for him it would bring back a vague memory of having been there, done that.... but the details of the event were lost to him. 

One Sunday evening not too long ago, Eli had been looking thoughtful for a while, when he suddenly looked at me and said, "Mom, can you tell me what we did yesterday?" 

"What do you mean, honey... you mean, the whole day?"

"Yes," Eli said.  "I don't remember Saturday."

It pretty much floored me, but I reined it in and described how Daddy and I had gone to the store in the late morning while he and Ash had stayed home; how Ash had worked on his English project all day and then gone out on a date later that evening.  I reminded E of how we'd stopped by the funeral home Saturday evening for the calling hours of a friend's husband, and how Eli had waited in the car playing with my Kindle because he really didn't want to go inside...and what we'd had for supper that night.

Eli responded with a thoughtful, "Oh yeeaaah...."  but I honestly don't know if he actually remembered the day or not.

So now we skip to yesterday.  Eli had some major problems with impulsive behaviors on several occasions at school yesterday.  The one incident - the worse offense of the two - was addressed right away and it was the reason for his consequence of no video game hour last night.  Eli fully admitted he'd done that one; had no idea why he said what he said, but knew he did it.

The second incident was not able to be addressed until about 5 minutes after it occurred.  By that time, Eli's brain had discarded the impulsive, inappropriate act completely and Eli suddenly found himself facing the music for something he could not remember doing.  It was a lesser offense, but for him, it was far more traumatic.  He was not asked to face a consequence for what he said, but you'd have thought we'd grounded him for rest of 2012 by his reaction! 

It's heart-wrenching to listen to his denials through hysterical tears!  He will never know how much I suffer along with him because - to him, in his mind - "Mommy doesn't believe me".

I do believe you, Buddy!  I know you're telling me the truth as you know it!  I know you can't remember what happens sometimes, but that doesn't mean it didn't happen.  I know it hurts you and makes you feel just awful inside.  But know this Sweetheart...

We will continue to help you learn how to control your impulses, and maybe one day you'll be able to stop yourself before you do or say something inappropriate.  It may take the next 20 years, but we're going to keep working on it.  We will never give up.  

Know that we never want you to think you can use "I don't remember" as an excuse to get away with things...that's just not an option.  It may seem harsh to you now, but we are going to empower you to succeed, not enable you to fail.

Most of all, know that I love you so much and your pain cuts through me like glass.  But we will carry on together, we'll grieve together, we'll heal together, and we'll overcome everything that tries to be an obstacle in our lives. Together.  You are not alone, Eli.

By the way, Eli has been all about his big brother lately.  So in order to get calmed down yesterday, he crawled up on Ash's lap for about 1/2 and hour and was greatly comforted.  Since Eli could not play video games last night, he spent about 2 more hours in on our bed with his Guys (actions figures) and watched cartoons.  By the time he left our room, he was Golden.

Today is the full moon!  E got up this morning and he felt so much calmer to me!  The frenzy he's been the last week was absent from him.  He felt smooth and thinned out, not thick and heavy with tension. I think we're going to see some marked improvement in all aspects of his life.  I'm happy for him.  He's due for a break.

Tics - not the crawly kind

Ben mentioned to me last night that he'd noticed an increase in one of Eli's "tics"... for the last few days he's been blinking almost non-stop, sometimes winking only with one eye.  Eli overheard and chimed in, "Yeah!  I know!  It started the other day...it's like I have to just blink and blink and I can't stop!"

I'm actually wondering if the onset of the full moon tomorrow (March 8th) is the catalyst for the sudden increase in tic activity.  It will be interesting to observe whether or not this activity decreases after the moon begins to wane.

I mentioned in a previous post Eli has been presenting more baby-talking.  His teacher reports that he's being very loud and can't seem to speak in a quiet voice.  Many of his "tics" are auditory -- yelling out words, sometimes once, sometimes over and over; making repetitive noises; latching on to a word or sound that feels good him and he won't be able to leave it alone, but is driven to repeat it for days. 

Other tics are more "physical", such as the non-stop blinking, sniffing air through his nose over and over, rubbing his hands on his legs to feel the textures of the material in his pants.  Denim is a favorite texture for him to explore, and a new pair of jeans brings great joy because of all the stuff to feel!

You can imagine how strange it would seem to the someone to observe another person presenting these behaviors in public if they were not aware of the person's circumstances.  Imagine yourself encountering a stranger who is displaying some of these behaviors.  Whether it's an adult or a child, your first instinct may be to feel uncomfortable and awkward... you might think, "What's she doing??" or "Whoa, he's really weird!"  Perhaps you have already had an experience like this in your lifetime!

Now think of Eli.  Now that you have met him and are gaining a basic understanding of this phenomenal, complicated kid of ours, and you appreciate the challenges he faces in all aspects of his life on a daily basis.... I want you to think of him the next time you encounter someone you would have once thought of as weird. 

My goal is to promote compassion, tolerance, understanding and awareness here.  See that weird person in a new light.  Recognize that this person deals with daily challenges you blessedly may never know anything about.  See the person as someone's child, or a brother, sister....someone's friend.  Know the person probably has a family and a support group who loves and accepts him just the way he is, and then YOU try to do the same for that person as you would now do for Eli.   Smile, do your best to look them in the eye, even if it's awkward, and really see the person beyond his tic, or any other unusual behavior he may be presenting.

Open your heart to those who don't necessarily fit within the social "norms" of society.  Wonder about their stories and offer them kindness.  That's really the best gift you can give them.

Not sure how to communicate with my son about his diagnoses

"Can we change the subject now?" is a commonly uttered phrase by Eli, generally followed by a huffy breath, and the occasional roll of the eyes.  

He doesn't care to discuss anything further about a particular challenge he faced that day.  He doesn't care to discuss what he maybe should have done instead of what he actually did.  He doesn't want to explore any aspect of how a situation made him feel or let me try to help him heal from it.  

He certainly doesn't care to talk about his diagnoses or anything related to his treatments or his current challenges!

It concerns me greatly.  I am naturally a communicator, and a "fixer".  I struggle desperately with not being able to talk in depth about these things with the one person it affects even more than me!  

If I had my way, Eli and I would have long, glorious talks all about his thoughts on all of these things that impact his life.  I would have us snuggling on the sofa, defining all the "labels" that have been stuck to his forehead, so we could clarify and explain them and figure out just what that means in relation to "Eli the Boy", in a way that he could understand it and be okay with it.  

We'd go for walks, and I'd break it all down for him so that it wasn't an overwhelming enigma.  I'd take away all the fear!  He'd be comforted and secure and understand he wasn't some oddity.  We would have healing conversations about his feelings, his fears, his greatest challenges that he's facing right now, and how I can better help him overcome anything that he currently believes is standing in his way.  After I was finished, he wouldn't feel like he was different.  He'd feel empowered!  He would think, "Sure I've got this challenge to face, but I know I'll be like Superman and leap over it because I've got my mom and dad and brother and a whole lot of love and support and it's not going to be a problem because this is not a scary thing at all!  I'm super Eli!"  

Instead...when I try to broach a subject with him, I get cut off.  "Okaaaaay mom.... I got it.... can we drop it now???"   Exaggerated huffy breath.  I haven't even really said anything yet, but he knows what I'm bringing up and he wants none of it.

So we drop it.

I read an article the other day about a young man (late teens I believe) who was reading something about Asperger's and he recognized himself as the article unfolded.  He said to his parents, "This is me, isn't it?!"  His parents had never told him he was on the spectrum, never attempted to help him to understand or explain his challenges to him.  He stated in the article that all these years, he'd just thought he was really dumb.

It broke my heart!  That poor kid!  Why didn't his parents try to do everything they could to help him?  Why did they hide it, especially from HIM?!  It isn't fair of me to judge them, as I don't know their circumstances, and I certainly am not walking in their shoes.  Possibly they thought they were shielding him!  But I kept thinking of the emotional torment he'd been enduring silently for years all alone, not knowing, not understanding.  I don't want that for E!!!

I think my biggest worry for Eli is that he IS capable of understanding there's something "different" about him, and maybe he doesn't want to talk about it because it's easier to ignore it and pretend it's not there.  I don't know if that's healthy for him?  There's a slim chance that he just doesn't understand, but Eli is incredibly bright, and I really don't believe that to be true.  Then again, I'm never entirely sure what's going on in his little head so....????  I'm concerned it's denial and fear that doesn't allow him to talk about it and his way of coping is to push it aside and avoid it.

I don't want to force the issue and make him super uncomfortable.  Maybe he doesn't fully get it, and if I force it, then he will start to feel like there's a problem with him.  Maybe it's a nicer feeling for him to not ask questions, ignore it and just Live His Life and be himself.  I'm all for that!  

Some things we must discuss, such as a particular inappropriate behavior that may have occurred, why it was a problem and what is expected of him.  Those topics must be addressed quickly, or he forgets he did them (it's part of the Tourette Syndrome) - and while he doesn't LIKE to discuss it, I do force it on those occasions, because he has to deal with consequences and learning appropriate behaviors.

As for his many diagnoses... for now, if he doesn't want to discuss them, I plan to let him be.  We don't have to talk about it.  Sometimes I ask him if there's anything he wants to know, (NO!) or if I can explain anything that is confusing to him, (NO!) and I always reiterate that if he ever has any questions about anything, he should never be afraid to ask, (Okaaaaaayyyyy...can we change the subject now??!!)

Those fears haunt me though!  What if he's suffering on the inside, and he's not sharing it?  What if his perception of himself is totally skewed and wrong and he thinks he's damaged or broken and he won't verbalize it??  Ugh!  Those thoughts about do me in!  How do I make sure he understands and has the right information about all of this if he flat out refuses to discuss or share? 

For now I'll just let him be wonderful Eli, making sure he knows he can ask me anything, anything at all, at any time.  I guess that's about all I can do.  But I welcome your thoughts on the matter, if you have experienced anything similar with your child.

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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