Will Monkey Survive?



Sami seems to have grown a lot in the last week!

 Tomorrow is the big day when we go pick up Sami, our new Yellow Lab!  Eli is beside himself with excitement!  He informed me yesterday that he might play an hour of video games, but otherwise, he'd be playing with the dog.  That's one heck of a sacrifice for him!  He doesn't give up his gaming all that easily! 

Truth be told, we're all pretty excited.  I know she's going to be a lot of work, but the whole family is finally in sync in being ready for this precious Godsend.  And I especially have great hopes for the bond Sami and Eli will make as the years go forward.

This afternoon, I began to think about this new addition to our famliy and was feeling all happy, until a sudden thought hit me like a ton of bricks. 

New Puppy + Eli's Stuffed Monkey = One Possible Catastrophe. 

Oh boy.



Eli enjoying a Where's Waldo book...let's play
WHERE'S MONKEY in this picture and all the rest below...

"Monkey" is Eli's best friend.  And I don't say that lightly or facetiously.  Eli goes very few places without Monkey, and quite often if Monkey didn't make it into the building with us, he's at least waiting in the car. 

He's a brown and cream little guy with a sweet face and a body that was once stuff with little round plastic "beans", like a bean bag, but over time he's become rather "flat" and hollow.  Most of his beans are missing from his upper body, but Eli loves him just the way he is. 

A good friend of Eli's has a similar monkey, but the friend's monkey is stuffed with stuffing.  It's a fatter, more robust monkey, and Eli doesn't care for how the other monkey feels.  To him, his own Monkey feels just right and good and perfect.  And he loves it so!  Eli will get very upset if you refer to Monkey as a "stuffed animal" and will argue with you, insisting that Monkey is REAL!  And to Eli, Monkey IS real! 

To Eli, Monkey is comfort and love and Monkey doesn't judge him.  Monkey never gets upset with him, or frustrated, and Monkey is soft and comforting.  In Eli's own words, "Monkey is awesome.  He's nice and strong and we're close because we spend a lot of time together.  Monkey is always there for me." 

I'm suddenly very concerned about Monkey's well-being, with having a new puppy in the house, and what will happen if Sami and Monkey have an unfortunate encounter. 



At Bubba Gump Shrimp Co.
Can you find Monkey?
(And those are models of Forrest Gump's shoes,
NOT Ash's feet!)

Monkey has become an accepted member of our family over the last few years.  No one remembers where Monkey came from, if he was purchased or given as a gift....it just seems that Monkey has always been with us!  Usually the last thing I ask Eli before bed is, "Do you have Monkey"  The last thing we ask before leaving the house is generally, "Are you taking Monkey?" Upon opening his eyes in the morning, the first thing Eli searches for is what has become of Monkey during the night!

One time, about a year ago, Monkey had fallen down behind a basket out of the bed during the night, and he was not easy to find.  When Eli could not locate him the next morning, we had quite the dramatic scene of panic and hysterical crying.  Eli spent a good bit of time searching, and it took a lot of patience and coaxing to get him back on track to get ready for school. 

Thankfully during the day, Daddy, who had recently retired at that point, spent some time searching and was able to find Monkey's where-abouts.  Eli was one relieved, happy-camper when he came home to discover Monkey safe and sound, and found! Eli ended up writing a story about the experience for one of his class projects.

As smart as Eli is, and despite the fact that he's nearly ten years old, he remains delayed emotionally by several years. In simple terms, he acts younger than his years.  Perhaps one day he'll catch up with himself.  He's capable of faking it pretty well when he's with his male peers, and in other people's homes, which tells me he'll get there eventually.   At home, however, or whenever he's with people he knows he's completely safe with, he is still prone to baby-talking and he is as attached to his stuffed monkey as any young child would be to a security blanket. 

Imagine taking a 3 year old's blanket away and telling them it was gone for good...can you imagine the hysterics that would ensue?  The anger?  The crying? 




Eli and Monkey riding the
Merry-Go-Round at Ober Gatlinburg

 

That's my fear for what would occur should Sami get ahold of and destroy Monkey!  I would like to think that Eli would be able to adapt, but it's unrealistic for me to assume it would be that easy.  Afterall, dealing with sudden changes can be a challenge for E on a good day.  It's hard to fathom the grieving process Eli would go through, should Monkey come to a destructive end!

We've already talked about keep things up off the floor so Sami won't be able to get to them, mainly for her safety but also so items won't be destroyed.  Our last dog taught us enough valuable lessons about that, and those items were generally on shelves and cabinets! 

Eli's already decided that he's going to just leave Monkey on his bed.  Hopefull that will keep his friend safe.  I'm grateful Ben will be home all day to keep an eye on our new joy!  But I'm considering a concrete vault to lock Monkey in when Eli's not home in order to keep Monkey safe!  (not really...but maybe!)  And what about that one time when E slips and leaves Monkey laying on the ground next to him, while he's gaming or playing with his Guys, just like he is used to doing, and Sami snags Monkey up??  I shudder to think!!!

 

Kim, Ash, Eli AND MONKEY rode the Go-Carts.
Can you see Monkey? 

I'm thinking we're all going to have to really help Eli to be mindful about what he's doing with his Best Buddy!  Maybe, just maybe Eli will be so captivated with Sami that he'll decide to put his stuffed friend away, and that it is okay because the real, live friend is so much better! 

Aha!  There's a thought!  This could possibly be a turning point for Eli! 






Eli & Monkey with a really big bear



When we take Sami for obedience training in the Fall, when she's old enough, I want Eli to be a part of that, if it's permissible for someone his age to be in the training sessions.  I want to have him be a part of helping to train her because I'm hoping that it will just be one more step in forming the bond between the two of them, and it might be an educational experience for him all the way around. 

I look forward to watching the relationship between boy and dog develop and grow.  Dogs are a great source of comfort, even if they are not specially trained.  My hope is that Sami will help to calm Eli when he becomes upset.  Perhaps she'll instinctively know to go lay beside him when she senses his anxiety rising.  Maybe if he's feeling tense and emotional, being able to reach out and pet her soft fur, and have her nuzzle and cuddle and lick him, will be enough of a distraction, and have sufficient comfort that it will calm him before the emotional storm unleashes itself.  

Perhaps as that takes place, the insatialbe need for Monkey will slowly recede and Sami, a living, breathing source of comfort and non-judgmental love will move in to fill the void.  It's a possibility. Maybe it in time it will be comfort enough to know Monkey is still around, even if he's put away in box.

I still want Monkey to remain safe though because he's a very special part of Eli's childhood.  As Eli himself said, "Monkey is always there for me."  When he's 60 years old I want him to be able come across his special friend, maybe show his grandkids, "This is Monkey.  When I was about your age, he was my constant companion and he gave me a lot of comfort."



Sami

 Please Welcome Sami!

Miss Sami will be coming home to join our family on Saturday



This Saturday, we are going to have a new member of our family!  Please meet Sami!  We will be picking her up in Marietta this coming Saturday.  She is a yellow lab and the last of her litter to find a home.  I'm so pleased she'll be coming to ours!  Eli is so excited, he willingly cleaned his room to get ready for her!

I started searching for a new dog about a year ago. Well, sort of.   Our first dog, Charlie, died in 2004.  Ash was seven and Eli was two, so neither of them really remember her all that well.  Charlie was Ben's and my "baby" before the human babies came along.  We had her over ten years.  Seven of those years Charlie was diabetic and Ben gave her insulin shots twice a day. Eventually she developed cancer in her esophagus and we had to put her down because she was suffering.  If I allow myself to think too long about her, the pain of losing her will overwhelm me.  I don't seem to have any "online" pictures of her, or I would share her sweet face with you.



Sunrisa (Sunni) with her Kong chew toy.

We got our next dog from a local rescue program.  Sunni was such a sweet girl!!  She'd been rescued and then gave birth to a healthy litter of 7-8 puppies shortly after her rescue.  When we met her, all the puppies had found homes, but Sunni had not.  I don't know if the poor girl had ever been inside a house before.  We brought her into our home in 2007 and gave her love and worked with her for over two years, trying to acclimate her to living in a house.  She was very high strung, and Eli was terrified of her at first because she would knock him down on a regular basis.  Her energy and size was just overwhelming for him. 

Sunni was extremely clever, but not what I would call a very smart dog.  She repeatedly got herself into some serious predicaments.  She was like an escape artist, often escaping from her crate when we weren't home, and the door would still be latched.  She would find ways to get to things that should have been well out of her reach.  She apparently could fly and beam herself anywhere she wanted to be.  She had a dangerous taste for chocolate.  We never once willingly gave her any, but she found ways to get it that would require levitation, and thumbs.  Or magic.  We often referred to her as Houdini-Dog. 

 However, she was as sweet a dog as they come, which is why we invested over two years of effort into trying to make it work. The longer we tried, the more destructive she became, ruining clothing and blankets, toys, school projects, Christmas presents and two $130 crates, because we couldn't leave her free to roam the house when we weren't there.  She wasn't trustworthy, and she wasn't happy living in a house.  We live right on a busy state route highway, so we couldn't let her roam outside.  And she was completely capable of escaping any sort of harness or fenced-in closure...it just wasn't safe to leave her unattended outside. 

We loved her so, but she just wasn't cut out to be a house dog...and it wasn't fair of us to try to force her to be.  We had to make a hard decision, put her happiness first and find her a better arrangement that would make her happy.  It was a process, because we were not willing to let her go back to the rescue place, nor were we willing to let her go to just anyone.  Finally, a friend who had a lot of property said he'd 

Just one example of something Sunni destroyed.

love to have a dog.  Sunni would have a lot of space to run, which is really what she needed, and so she moved in with him, and it's been a match made in heaven!  She went to live with him at the end of 2009, and up until about a year ago, I'd not been interested in ever having another dog.  Sunni had sort of "done me in"!  And I swore I'd never have a "big dog" ever again.

In late 2010/early 2011 after Sunni had been gone for a little over a year, both Ash and Eli started longing for another dog.  Ben was retiring in the spring of 2011, so we urged them to wait.  Then summer was going to be upon us, and Ben didn't want the responsibility of a new puppy to keep him from doing stuff with the boys all summer.  So we waited again.  Once in a while, I'd check out dogs online and I even contacted a few of the numbers.  I was amazed at how many people post dogs on there, and then won't call you back!  Why bother advertising your dog for sale if you aren't going to call someone back?!  But anyway...


By then the holidays were upon us and a new puppy to manage would have been difficult.  All this time, I didn't feel any desire or longing for a dog anyway, so even though the boys were chomping at the bit, I really was indifferent to finding a dog.  It just didn't feel right.



My good friend Mari trains assistance dogs and she is excellent at what she does!  Mari came to visit a few weeks ago and brought one of the trainees, Sly, with her.  Sly was here to Wow! an Animal Behavior class and he ended up Wowwing! me instead.



Not sure who is actually giving the lecture...Sly or Mari?

 Sly was such a good boy!  He is being trained to be a working dog, and he was exceptionally well behaved.  Although I swore I'd never have a big dog again, I instantly fell in love the the big guy!   

I started doing research on Assistance Dogs for Eli, because some organizations do train dogs to give assistance specifically for children with autism.  The dogs help with behavior and emotional outbursts and any number of other things.  The research I read said that children responded exceptionally well to the dogs, and were far more accommodating in being "guided" by the dog than another person.  

I was very interested in what I found, and thought I would share it here, in the event someone else is looking into an assistance dog for their child.  Please note, I'm no expert...just a mom who did some reading and this is what I learned in the brief time I was researching the subject.

Organizations such as the one Mari instructs for give their trained assistance dogs free of charge to those who qualify to receive a dog.   

Not so with the organizations which train assistance dogs for autistic children.  Those dogs ran around $13,500.  They often use Labs for the dogs they train because they are smart and have good temperaments.   Once you pay that money to the organization for a dog, you are then placed on a waiting list and will wait approxiamtely a year before a dog becomes available.  You are required to go for training yourself, which makes a lot of sense.  You are acquiring a working dog, not a pet...you have to know how to work with it in order for it to be effective.  You do not gain ownership of the dog, however...even after paying all that money.  You are required to financially support the dog - food, shelter, care - but the organization retains ownership, and I read that they will come for home visits once or twice a year to see how things are going.      

That was my basic understanding of the Assistance Dogs programs for Autistic kids. Now, if Eli was severely autistic with far more challenges than what he faces day-to-day, I would certainly be willing to invest in a working dog to help him!  We would have to have community fund raisers to raise that kind of money, but I would gladly do it, if I thought it was necessary.  

In Eli's case, however, we decided that a pet was more our speed.  Eli can definitely use some comfort when his emotions overwhelm him, but what dog doesn't get in your face and lick you and make over you when you're upset??  Every dog I've ever had has comforted me when I've been upset.  I think Eli will benefit from just having a pet.  Sami will probably love on Eli and comfort him anyway, when his emotions are running high.  Maybe the next round with the Full Moon will go more smoothly with her in the picture!  We'll have to see!  We will get her involved in the obedience classes next September (she'll still be too young for the one's in April), and we'll all learn mutual respect, dog and humans alike.  We can all learn from each other, just as we do every day on this journey!  

Can't wait to snuggle this little girl and let her know she's loved!

All I can tell you is that Eli is so excited, he's counting down the days until we bring Sami home.  Ben, Ash and I are really excited too.  So is my sister, Rachel!  Exactly one week after her wedding, she's driving down from Columbus to go with us to pick Sami up!  I guess my new brother-in-law knows where he stands now!  (Just kidding Kevin!)   The timing was absolutely perfect, and I really believe it's a God-Thing that Sami came in to our lives.  As I mentioned before, I've been half-heartedly searching for nearly a year for a dog, and nothing had worked out.  Nor did it feel right to me.  After I began to research and realized that a Lab would be a good breed for our needs, a friend and co-worker suddenly shared that she had a friend who breeds them, and they had one yellow female left who had not yet found a home.  A few emails later, we had plans to pick our little Sami up on Saturday!  God's timing is always right, and when He intervenes, everything just falls into place exactly how it's supposed to be.  I'm glad I didn't reach any of those previous people who had dogs for sale!  Obviously, it wasn't time yet. 

And clearly, it is time now!

The Wedding Weekend



Being patient and standing still

This has been a wild and fantastic weekend!  Eli did a wonderful job as Ring Bearer at his Aunt Rachel's wedding!  Preparing him ahead of time for what to expect had very positive effects!

Wednesday evening last week I took him to Donatos and let him play a while.  Over pizza we discussed what would be happening on Friday, Saturday and Sunday.  We talked about the things he would see and be expected to do, and in general everything he might expect to happen during the up coming weekend. 

I had made a print out of days and approximate times, and he looked over it as I talked, but he didn't really want to hang on to it after we were done.  That was okay!  At least he'd looked it over and it might help him to remember since he had visually seen it.  He didn't have any questions at the time, but I was very proud of him that he was willing to give me his undivided attention as we talked about it. 

This was his first wedding, EVER!  It was all new to him.  He's never been to a wedding before, not even as a guest, let alone been IN one. 

We also talked about the the after-effects all the events and busy-ness might have on him several hours later when it was all over with, and what we might do to avoid a meltdown.  Huffy breath -- I'll be fine, Mom!  He never thinks he's going to have one, and I'm always hopeful this time he'll be right!  But we still talked about the possibility, and the things we might do ahead of time to help him get through the sensory overload.  Just in case.  And because we know his history.

Early Friday morning, Ben, Ash, Eli, my Dad and I all piled into the CRV and went to Columbus for the final tux fittings, as well as to pick the tuxes up and bring them home!  Eli was "squished" in the backseat of the car and that was getting on his nerves.  We played Scrabble on the Kindle to help make the trip go easier. 

Eli was adorable in his tux!  He did a really good job being patient while the gentleman adjusted his tie and vest and made sure everything fit just right.  Eli spent considerable time buttoning his own vest himself and I was proud of the gentleman helping him, as he too was patient with Eli and allowed him to do it.  This was a really nice gesture, considering how busy they were at Men's Wearhouse that morning!   



It took him awhile, but Eli got it all buttoned.



Friday evening was Rehearsal, and E learned his role and did great, just like I knew he would.  He didn't eat much at the Rehearsal Dinner, but that really didn't surprise me.  However, the choice of food he chose to eat did surprise me!!  I thought he would like the chicken cordon bleu, but out of everything that was being offered, he ended up eating several bites of the Mongolian Beef Stew.  It would have been my last pick of what he would have preferred, and it reminded me once again that I don't know every darn thing, do I?!  And that's awesome because I never tire of learning new things from my Eli!  



My sister, Rachel, (center) as I adjust her veil.



Very early Saturday morning, I had to leave the house many hours before Eli, Ash and Ben had to be anywhere.  We girls had hair appointments, and had to have time to get dressed and made-up before helping the Bride to get ready, not to mention all the pre-wedding pictures.  By the time Eli caught up to me, it was about 30 minutes before the ceremony was to begin.   

Eli, Ben and Ash looked drop-dead gorgeous in their charcoal grey tuxes and dark blue vests and their beautiful red hair!  I looked at my little family, and for a moment I thought I would cry from all the love, pride and happiness that was overwhelming me; this on top of the sheer delight of the fact that my only sister was marrying a wonderful guy in less than a half an hour!  The lump in my throat was nearly enough to choke me!  

Eli jumped up the moment I entered the room, where we were all waiting before the ceremony began.  "Mom, did you bring the roll-y cameras?" 

Oh boy!  I'd forgotten the disposable cameras!  Headthunk!  Eli calls them roll-y cameras because you roll the little wheel to advance to the next picture.  He wasn't happy that I'd forgotten them, but he made good use of Ben's digital camera instead, taking multiple, blurry shots of his Monkey, the emergency flood lights on the ceiling, the thermostat, the wallpaper, the house-phone on the wall, and a few shots of actual people as well, until the camera's batteries ran down. After I saw the pictures he'd taken, I was grateful I'd not invested in the disposables or the cost of getting the film developed after all.  I think only nine of the pictures he took were usable.  However, the real photographers were delighted with him and got some cute pictures of Eli taking pictures of all those benign items, such as the plant outside the door, and the empty hallway. 



Handsome Eli, all smiles!



The ceremony was beautiful and sweet.  Eli did his part perfectly, and was such a patient guy.  He spent a lot of time having to wait afterwards, and he did really well. It was actually difficult for the adults too!  We were all hot and hungry by that time and it's really hard to have to get through all those pictures.  Eli was on best behavior and I was so proud of him! 

His shoes were hurting his feet by that time (as were mine!!) and he really wanted to take them off, but he toughed it out with only a little, minor whining.  I assured him as soon as the pictures were finished he could take them off.  The photographers did their best to get Eli's photos over and done with as quickly as possible, and then we gave him the green light to get comfy.  Off came the shoes, off came the jacket, the vest and the tie, and then he surprised me yet again by putting the jacket back on.  I told him he could leave it off as well, but Eli was cold, so the jacket remained on him throughout the afternoon. 

The reception was upstairs, lovely and such fun!  Eli spent a great deal of time helping to entertain the young daughter (two-ish?) of one of Rachel's long-time friends.  Around 5 o'clock, Eli had invested about 5 1/2 hours to this wedding day, not to mention the time he'd invested the night before, and this was seriously cutting in to his video game time!!!  He started asking, "How much longer?"  and  "When are we going to leave?"  I recognized the fact that he was done.

I went to Rachel and asked her if she would be upset if we cut out about 1/2 an hour early, because I could tell our little guy didn't have much left in him to give.  His senses had had enough.  Rachel and Kevin were both understanding, of course, so we headed home.  I was ready to get out of my dress at that point too!

Several hours after we got home, the overload hit.  Eli got super angry at Ash, and started verbally lashing out at him relentlessly, over a minor mistake that Ash had made.  I'm not sure why Ash is often the target...I suspect it's a sibling thing.  I have to give Ash some major kudos for handling it as well as he did.  He stayed calm, and simply apologized to Eli several times for the mistake.  He didn't get angry back and pretty much just held his tongue.  I think he realized that the after-effects of the big weekend were suddenly presenting and taking Eli over, just like we'd talked about.  I know it was tough on Ash to have his brother being so hateful toward him, but he kept his cool and handled it like a pro!  Great job, Big Brother!

Eli didn't cry or scream this time, nor did he run and hide in another room or under furniture.  But he was beyond reason with his anger, and just wouldn't give up making nasty, accusatory remarks toward Ash.

Finally, I got down on the floor with him, and as I rubbed on his belly (after making sure it was okay with him that I did so), I whispered to him that he was being unfair, and reminded him of all the wonderful things Ash does for him, and reminded him of how much they love each other.  I then reminded him that this was the sensory overload reaction that was happening because of how busy our weekend had been. 

Remember, we talked about how this might happen, and how you would need to "detox" from your senses when we got home.  How anything stressful might send you over the edge....cause you to get really upset and this was why you're feeling the way you are, the anger and the strong emotions; why you're lashing out at your big brother, who loves you so much, and didn't do the mistake on purpose to hurt you....it was just an accident.

I stayed with Eli on the floor for about 5 mintues, kissing him, talking quietly to him, patting him, and reminding him that we had talked about the possibility of this occuring.  He began to relax, and then was quiet for a while and I let him be. 

A short time later, he was back to talking to Ash in nice tones and all was well.  So that "technique" worked really well this time... we'll remember it and try it again another time.  No guarantees it will consistently be helpful, but it's just one more learning experience on this journey, and Eli has once again taught me Something new!

Preparing for a huge event

My sister is getting married this Saturday, on St. Patrick's Day, and we are all involved in the wedding.  I'm the matron-of-honor, Ben and Ash are serving as ushers, and Eli is the Ring Bearer, although he will not actually carry the rings, as is the custom these days.  He'll have a pillow to carry, and possibly "fake rings" tied on to the ribbons, but I'm not sure...maybe he'll just have the pillow. 

Either way, I think he'll handle the honor quite well.  We'll practice Friday night and he's a smart guy...he'll probably have the details of what happens down better than the rest of us will. 

My biggest concern is keeping his shoes on him throughout the ceremony and the pictures afterward.  My understanding is that "tux shoes" are not always comfortable.  That will be doubly annoying for E. I've already talked with him about them, and I'm hoping we've reached a compromise. 

"If they aren't comfy, you need only keep them on during the actual wedding ceremony and until the pictures afterward are completed...then, if they hurt your feet, you can take them off and go in your sock feet to the reception." 

He said okay. 

Let's hope he's willing to stick to that once the shoes are on!  Let's hope the shoes are not too bad and aren't at all painful because I can see him slipping them off before he walks down the aisle and leaving them in the hall. 

Then he'd say, "What?!  They hurt my feet!"

I have visions of E running around the Reception in his socks, and as time goes by, bits of the tux will be removed and left scattered throughout the room as the clothing begins to annoy him.  The shoes will be under our table. The jacket on a chair somewhere over there.  The vest is lying under the buffet table.  The cummerbund is floating in the punch bowl...

Yeeaaaahhhh...we'll have to establish a place to pile items ahead of time, should he decide to remove them! 

I've been thinking of how we need to plan this out for Eli.  It is imperative we have a plan in place and we've talked to him about what will happen, what is expected of him, what is involved, so that there are no surprises, and he knows well in advance what to expect.  Especially how much TIME is going to be involved.  He needs to know up front this isn't going to be a few minutes and then he can go back home.  We'll need to let him know how all the activity we're involved in this weekend is going to unfold, and how it's going to start early Friday morning, and stretch through until Sunday afternoon.

I think I'll create a written-out schedule for him to hold on to and check when he needs to so he'll know what's coming up.  That will give him a measure of control over what is happening and give him the ability to plan ahead, on his own, for what is coming up.  He may discard it...he may utilize it.  I'll leave it up to him to choose.

I'm concerned he'll begin his "I'm booooored" routine 30 minutes into the reception and start demanding to go home.  I'll have to think of some entertainment to bring along.  His "Guys" (action figures), the PSP - gotta make sure it's charged up - maybe some snacks in the event he refuses to eat the glorious, yummy food that will be at the reception.  OH!  Maybe I'll get a couple of disposable cameras and give him the job of getting some decent pictures of people he knows!  They'll be nice little additions to Rachel and Kevin's album, if they turn out nicely.   

I have to think about the Rehearsal and Rehearsal Dinner the night before as well, and talk about it with him so he knows what is going to be happening.  We'll have a couple of trips to Columbus this weekend as well.  I should probably talk to him when there are no distractions...so I think we'll go to dinner tonight, where we can have a conversation without cartoons or video games pulling his attention away.  Otherwise, it will be overwhelming to him, and he'll stop listening after about 2 minutes.  "Can we stop talking about this now!"

Preparing all children ahead of time for events that are coming up is crucial, but for Eli, it's the difference between a good experience for him, or a bad experience for everyone! 

Overall, he does a great job.  He's come such a long way in the last 5 years, and I'm so proud of the good job he does for the most part.  But I still recognize that it's hard on him.  The stress of being in a place other than home (his favorite place to be!), surrounded by a mixture of people, many of whom he won't know.  The noise.  The uncomfortable shoes.  The fact that he can't just run around and do whatever he wants, but must spend some of the time sitting in a chair at a table.   Wearing clothes that look great, but aren't necessarily built for comfort.  Heck, that's hard for ANY kid, and even for some adults!!  For Eli, it's a sensory overload just waiting to happen.  I suspect he'll have a reaction later that night.  But it'll be okay...I'm ready for it and I'll get Ben and Ash ready for it as well.  We'll work through it, and we'll get him the alone time he needs after we get home so he can "detox" from his senses for a few hours.

We'll spend time talking about what he might see or experience.  We've learned not to surprise him, and I suspect he's going to do just fine.  I'm just thankful the full moon has passed and he's operating in a much calmer state this week!

New Successes - celebrating your kid's every achievement!

I was doing some of that deep thinking last night.  I was thinking about how much we have taken Ash's achievements for granted over the years.  Obviously we've celebrated the major milestones... graduations and honor rolls, losing teeth, birthdays and learning to ride a bike, .... but what about the every day things?  The less exciting things that we expect from him ... did we ever celebrate those things with him?  Praise him for a job well done?



Eli eating a giant cookie



I began to ponder this last night when I heard Eli whistling.  After about two years of trying, Eli has finally mastered the technique!  No more breathy spittle flies from his lips as he tries to force the whistle out... he actually makes a high pitched whistling sound and is learning to control the air flow to produce different notes and sounds.  It's still a work in progress, but how exciting after all these years of struggling to learn it! 

Eli had nearly given up on several occasions, proclaiming, "I'm never gonna learn this!" with great frustration.  We assured him that if he just kept trying, eventually he would figure it out.

Now that he has, we've been so proud of him!  "Seeeee!  You did it!  I knew you could do it!! 

At first he was driving us crazy with a single,whistled note that he would walk around repeating over and over.... "Hey, E...how about you go practice that in your room...??"  You would hear him in there for a while until his lips got tired.

Did we celebrate Ash learning to whistle?  Has it just been so long ago that I don't remember, or was it just expected he'd get it "like all kids" and we said, "Good job!" and dismissed it? 

Or how about when we told Ash that he was to start packing his own lunch.  We expected him to start taking care of this responsibility himself several years ago, and he did.  But did we celebrate it??? 

Eli now packs his lunch himself without complication.  But it's taken quite a while for us to get to this point.  We no longer have to listen to the hysterics of "I CAN'T DOOO IT!  IT'S TOOOOO HARD!!!!" or the drama and begging, "Plllllleeeeeaaaaase mom...just this one more time, pack it for me!?!" 

"Plllleeeeaaasse at least make my sandwich.... it's tooo hard!  I can't do it!  You make it better..."

We've spent months and months...perhaps a year or more...working with him to help him gain the skills and confidence to do it all himself.  And when he began to do it himself, we celebrated!  Because this was a long time coming!  Because "look what you can do"!  Because it was a major achievement for him!  No more tears!  No more meltdowns before we could get out the door in the morning.  No more struggle of wills on who would spread the peanut butter on the bread.  No, man, we don't live there anymore!  Now we have Mr. Capable checking the menu each day to decide for himself if he's going to spend $2 of his allowance on the school lunch, or take five minutes to pack up a lunch to take with him.  He's in control, he gets to decide, and he's all over it.  He doesn't involve us at all in the process anymore.  We have achieved a major step toward independence!

Parents of a child with a developmental disorder, or any other type of challenges, can truly appreciate what it means to celebrate the little things.  We know what it means to spend months and months trying to get your child to do the most benign things that everyone else on the planet pretty much does without any problem.  When your child finally achieves it, we know the overwhelming sense of relief and sense of VICTORY that both you and your child experience!  It's fantastic!  It's cause for a party, for heaven's sake!

Then I thought back to Ash...

Other than forgetting to pack his lunch more often than not, he was always ABLE to do it all on his own.  As a parent, shouldn't I have celebrated that??  I most certainly should have!  Maybe even moreso because he was capable of doing it EASILY!  I should have danced him around the island counter in the kitchen and allowed him to see my utter joy in his great success!  But I didn't do it.

I think with our typically-developing children, we parents need to start being more grateful, don't you?!  Look at all the magnificent things they can do without any problems at all!  We should tell them how proud we are, and impressed we are, with the things they do every single day.  We should never take for granted the stuff that comes easy to them.  We need to celebrate all they have accomplished and build them up to recognize how special they are!

I commented last night to Eli that I was really impressed with how good of a whistler he was becoming!  I said, "Maybe by the end of the summer, you'll be able to learn to blow a bubble with your gum!"  (a task he still has not been able to master, but continues to work at)

Eli said, "Yeah, maybe NOW I'll be able to learn to swim!" 

(swimming lessons to-date have been a bust ... that's a whole other topic)

I said, excitedly, "Really!?  Do you think you're going to want to do swimming lessons this summer and finally learn to swim?"  Big smile on my face!

A look of panic crossed his face.  "NOOO!  I hate to swim!"  

Okay, so maybe not...

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.