Christmas and Autism

I collect Santa Clauses. Tonight they supervised as we finished the tree 

Christmastime can be difficult for those on The Autism Spectrum, especially children who have not yet mastered their coping skills.  The sensory overload can be overwhelming for these children. Bright lights, loud noises, extra people, upset routines, maybe traveling, going to other people's houses where the environment is different, and the rules are more strict and the expectations feel more demanding.....

Christmastime is a big Meltdown just waiting to happen.

I regularly read several other autism blogs.  I have learned so much about what others are dealing with, how many families are going through similar situations that we too live through, as well as how many are living with situations very different from ours.  Either way, I take great comfort in learning about their days and nights, their experiences and advice...it makes the isolation fade away!

2012 Christmas Tree at the Brooks' household

At this time of year I'm grateful Eli is able to handle Christmas festivities ..for the most part anyway.  I have read of children who are unable to handle the lights, the changes in the house caused by decorating, the sounds and smells and other sensory overloads that are all around.  I checked with Eli tonight while  we were decorating the tree, "Eli....does it bother you at all when we change the living room around by putting the tree in it?"

He said, "No, I don't mind."

Thank goodness, right?  It's just never occurred to me to ask him before!!  I'm still learning here and it's amazing how much I still take for granted!  I mean really...most parents never think about having to check with their child if the Christmas lights are too much or the tree might alter the room too much?!  I never thought about how the lights and the decorations and the tree or the Christmas Music might effect him.  Not until I read some other blogs and realized..."Wow!  That might actually be an issue!"

Christmastime always brings a sense of excitement, which means an increase in activity for Eli, which means more potential of getting in trouble at school due to increased disruptive behaviors.  History tells me we'll hear more baby talk out of Eli over the next few weeks, and his emotions are likely to be all over the place.  But this is the life we know...the one we live daily and adapt to as needed.  In our house, Eli is often the one who sets the tone and we adapt to assist him through the rough patches as well as celebrate the happy times.  It's just our "normal".

Last night we started getting the tree up and finally finished it this evening by putting on the ornaments.  The whole process is a big job anyway, but since Ben can't help this year after having back surgery a month ago, it just took the boys and me that long to get it done.

I watched Eli start with enthusiasm, rediscovering ornaments from years past and finding special places for each one.  One year, we made bird nests together, glued in little birds, tiny craft eggs  and a clothespin on the bottom of each to clip to the branches.  I usually spread the bird nests out to strategic places in the tree where they peek out cleverly, as if they came in with the tree... but this year, Eli lined them up all together on one branch and was so excited that he'd made a little Bird Neighborhood. He was quite pleased with his work. It may become a new tradition!

Eli's Bird Neighborhood in our Christmas tree

So far, so good, I was thinking, as we each added more and more ornaments to the tree. He seemed to be having a good time.  Then I noticed Eli flop into my recliner and begin to just watch.  The branches were filling up with our many, many ornaments collected over the years and it was getting difficult to find an empty spot to put another.  He didn't say so, but I suspect he was getting a little anxious about it, feeling a little stress at having to search high and low for an empty branch.

It was simply too much for him.

Big Brother of course chided Little Brother, as brothers do. "Hey!  How come we're doing all the work?  Why are you just sitting there?!"

Eli stated it clearly and definitively...."I'm done."

And that was that.  He'd done all he was able to do and so he stopped!  He knew his limit.  Whether it was consciously or instinctively, I am unsure, but I respected his decision and just let him be.

He watched us for a while, offering conversation and joining in the banter.  Still a part of the family time, but separated enough to be on comfortable ground...in a place where he could deal with it.

Around 7:30 p.m. we'd finally hung the last ornament, and I looked over at my Eli.

Apparently, tree decorating is exhausting.

The day I cried in front of sixty-five 5th graders

Eli being goofy at Crafts 2000

On October 25th, I went to Eli's school to speak to the entire 5th grade (approximately 65 kids) about Tourette Syndrome, which is one of Eli's challenges.  It's the part which makes him repeat words, yell out words, and make noises, among other disruptive behaviors. 

I described to the boys and girls in Eli's grade what TS is - and what it isn't.  I explained about tics (not the crawly kind!) and broke it down for them in ways they could understand. I compared tics to the hiccups.  When you get the hiccups, you really can't control what your body is doing.  They can be annoying, and sometimes painful.  Tics can be like that too. 

I also compared tics to an itch on the bottom of your foot.  You can try and try to not scratch the itch, but more often than not, you have to take your shoe off and scratch that itch.  Tics can be like that as well, in as such you can fight it for a while, put it off from happening, but it will keep bugging you and bugging you until you have to "let the tic out".

I talked to this group of 10 and 11 year olds about different kinds of tics...sometimes they can be motions.  Sometimes they can be vocal. People will blink or rock or make movements with their hands, or faces, or other body parts.  They can't really control it...it happens.  Can you imagine how frustrating and embarrassing that can be for the person struggling with TS?  Sometimes people make noises with their mouths or throats or say words repetitively or just yell things out.  Sometimes they can fight the urge, but eventually it will occur.  Eli explained it best to me.  He said, "Sometimes things come out of my mouth before I even know I've done it...and then I can't take it back."  

I was pleased at how smoothly the talk was going.  The kids were great!  The were courteous and politely listening.  I was doing fine!  I wasn't nervous or anything; things were going very well.  

Then I got to the part where I was to tell them that they know someone with Tourette Syndrome.  And as I said Eli's name, my throat went closed.  I felt so much emotion explode in my chest and the tears welled in my eyes. 

Crap.

My brain was screaming, "Nooooo!!!!  Don't you dare cry in front of all these kids!!!!"  How humiliating!  

The school counselor recognized I was struggling and he was kind enough to jump in and start talking for a bit so I could recover.

As I started to talk again though, I was still fighting the emotion, so I apologized and just pushed through it and eventually got back to where I was speaking clearly again. 

I hate doing that!!!!  I was mortified!!

Anyway, there was time for questions at the end, and a few kids did ask questions -- really GOOD questions!  I was really very impressed with their questions, and I could tell they'd really been listening, which made me feel good.  But do you know what most of the kids raised their hands to say? 

Most of the kids raise their hands to tell me about Eli.

Eli snuggling with his big brother, Ash, after Eli had been upset earlier.

They weren't tattling.  Not at all.  Most of the kids wanted to tell me how much they've seen him improve.  "Eli used to do this, but he doesn't do that anymore."  "I think Eli's come a long way since last year."  "I remember back when Eli used to do that, but he's changed a lot in the last few years and I never see him do that anymore."

Those kids will NEVER know how much hope, comfort and encouragement they gave me that day.  I'm so close to our life situation every single day, so it's hard to get a good perspective.  Sometimes I forget just how far Eli has really come!  Hearing these children, most of whom have been in class with Eli at one time or another for the past 7 years, tell me how much improvement they have seen in my child over the years.... that was the most uplifting gift those children could have given me!  They probably don't even realize how much kindness they extended to me that day.  I'm surprised I didn't cry again...but I was actually too busy beaming.  

Not only that, but knowing he is surrounded by 65 kids who will go all through school with him, who are accepting and understanding of him, who are growing up with tolerance as a part of their lives, who are friends with Eli and care about him as he is.... those precious boys and girls who sat there and gave me their attention and then told me nice things about my child.  I wanted to hug each and every one of them.  I was so proud of all of them! 

I saw something posted on Facebook the other day...it said something along the lines of, "Parents have to prepare their child for the world.  But parents of an autistic child have to prepare the world for their child." 

It's my hope that by helping his classmates to understand the reasons behind some of Eli's actions, and explaining some of the ways they can help him, they will take that knowledge with them all through life. Maybe when "scary Middle School" happens in less than two years, some of his former classmates will help explain him to all the new kids he will be joining at the Middle School.  Maybe they'll spread the acceptance, not only for Eli but for others they encounter along their life journeys, promoting understanding and graciousness and compassion. 

Makes me proud that these boys and girls are our future. 

One man's trash is our boy's treasure

Eli loves to scavenge!  Everywhere we go, he loves to search the floors for items the rest of us would step over or not even see.  Springs, brads, nails, screws and bolts, rubber bands, paperclips, bits of string, plastic tags, pen caps, the occasional penny, colorful or shiny items, and other "cool" items which people drop on the floor and forget....our son spies these items and thinks Christmas has come early!  He collects these items, fills his pockets with them, brings them home to live on his shelf.

I have to watch Eli closely when it comes to his scavenging.  He feels anything on the floor is fair game!  He sometimes has trouble understanding that just because something rolled off a table and fell to the floor, doesn't necessarily mean he can stuff it in his pocket and take it home.  More than once we have had to make him return something he found because it actually belonged to someone.  This is upsetting to him!  It was on the floor, after all!  Why shouldn't it be his?!  

Last Sunday when Ben and I returned home from the hospital in Columbus after Ben's surgery, Eli was really struggling.  The 2 1/2 day separation was difficult on E and his emotions were all over the place that day.  I went in to his room to spend some time with him while he was attempting to calm down.  As I sat there talking with him, I glanced over to his treasure shelf.  I paused as what I was seeing began to register.

".....Eli...? Is that my eyeliner on your shelf?"

"Yeah."

"Why do you have my eyeliner, Eli?"

Shrug.  "I don't know.  It was on the floor."

Aha.

"Well, honey....it must have fallen out of my makeup basket.  May I please have my eyeliner back?"

Pause.  Sigh.  Resignation.

"I guess."

Apparently my eyeliner will be the one treasure that got away.

So much to write about!

So much has occurred in the last month and a half that I hardly know where to begin.  Our family has faced a lot of trials, but we're still here!  And we keep putting one foot in front of the other.

We have been through med changes with Eli and half the adjustments have been good, half not so good.  We are currently waiting for a response from the Dr. for some direction.  It's been a rough 45 days for Eli and our family alike and I pray we are able to help get him back on track soon.  His anxiety is causing him many struggles, and these days I feel we've lost ground on many of our accomplishments.  Fortunately, I know we will move forward again in time.

Also, as of the beginning of October, we have left our church.  Four men whom we have loved and respected for many, many years put themselves in leadership roles and then behaved in such self-serving ways, putting themselves before God and all others in the congregation, that we can no longer be a part of that church.  The Four have been as selfish and demanding as spoiled children who only want their own way at all costs.  When they couldn't bully and badger hard enough to get their own way, they had a tantrum, treated people in hurtful and cruel ways, made very poor decisions, and declared themselves victorious.  Then they made up stories filled with half-truths and fabrications to justify their actions. Never once did they ask the congregation what was important to them.  Never once did they take anyone else's opinions into consideration. Just four guys on a power trip, and they ripped our church apart.

It has been such a terrible, eye-opening experience and I fully understand now why people walk away from the church and never look back.  It's because of people like this, who make the church a defiled, hypocritical place.  It has left us broken-hearted, but we will find a new church to call home in time.  One that is God-focused, where everyone is welcome and one's journey with and growth in Christ is more important than a petty, self-serving "Boy's Club" mentality and a dress code.  I wonder if I will ever be able to become as involved as I once was?  My trust in "man" has been shaken.  But my Faith has grown ten times stronger, so maybe that was the whole point.

Quite honestly, our family has grown closer to one another and to God through this difficult time.  There are still so many wonderful people still attending that church who we deeply love but had to leave behind, though it doesn't mean I want them gone from my life.  They are still precious to me.  I once again feel the loss of leaving home, but our family knows right from wrong and we cannot stay where this has been allowed to go on.  Our hearts will heal in time, and we continue to move forward.

Then, Ben had back surgery last week and I am grateful to say that he has had less pain after the surgery than he had going into the surgery!  I've not seen him stand so straight and tall for over a year.  It's been a long road leading to this point in our lives, and now he is on the road to recovery.  Finally and at last!  We are blessed to have been at Riverside in Columbus, and I can hands down say it was the best hospital experience we've ever had!  We both thought the place was great! Hopefully within two months he'll be feeling very much improved.

The hard part of Ben's surgery was that the Dr. told us Ben might come home same day, or possibly have to stay the night if he was to leak spinal fluid after the surgery.  The day AFTER the surgery, the Dr.'s partnering Dr. came in to visit and said, "Oh no...generally people having this surgery stay two to three days!" Ben and I had not planned for that, had not budgeted for that, and had not anticipated having to have someone care for our children for that long.  Thankfully my mother was able to stay with the boys until we came home two days later!  Thankfully my father was able to loan us some money to help with surviving the extra motel costs (two extra nights) and having to eat out constantly (me....Ben was getting room service, of course!)  I had brief aggravation until I got my perspective back on track, and everything worked out.

It wasn't so easy on Eli.  As much as he loves Grandma, having mom and dad gone for more than overnight was a severe upset to his "normal routines", and he did not handle the second half of our absence very well.

 So what's my point here?  Point is...life is hard!!  Just when you get to a place and you think everything is going along just the way you want it to, it can all fall apart.  It helps to know who you are and what you stand for, as well as what you won't.  It helps to have a solid foundation of faith for comfort and guidance.  It helps to know how to keep your eyes focused on the right things, to know how to regain proper perspective and keep a positive attitude during the most difficult of times.

God's been working on me steadily for the last year to drive these skills home, and though I'm not great at them yet, I'm far better at them than I was before. I'm learning to survive the trials of life.  I'm learning to hand it all up and relinquish control.  I have learned quite well that I am not in charge, I do not have control and, the most comforting part, I do NOT have to fix it!  All I have to do is trust, and wait.  He will manage the rest.  

As the whirlwind turns....

A month and a half ago I made the very difficult, very painful decision to give up my second, part-time bookkeeping job.  As much as I loved the job, I felt I needed to be home more.  I knew I would miss the work, and especially the added income!  But I had to make a choice as to what my priorities were, and after a lot of prayer, I knew the right decision.  So, with tears, I tenured my resignation.

I spent the month of October training my replacement, who will do a wonderful job, and Friday, November 2nd, was my last night working there.  It was bittersweet as I left for the last time, leaving my keys in an envelope on the office manager's desk, and walking across the parking lot in the dark to my car.  My last Friday night away from home.  I didn't cry.  I felt a good deal of relief in fact...but it was still sad.  I have spent every Monday evening and Friday night, at that job for the past four years.  It felt like leaving home.  But there's excitement in the freedom!  Maybe now I can go to movie on a Friday night!  Maybe now I can attend all those "things" I've had to decline over the past four years ... how many times have I said, "No, I'm sorry...I have to work that night."?  Maybe now I can say, "Sure!  I'd LOVE to go!"

A few posts back I mentioned the decision to start taking better care of myself.  I was going to have to clear the excess out of my life in order to stop running myself into the ground.  I need to be around for a long, long time for Ash and Eli.  I need to be healthy.  I want to know my grandchildren.  I want to still be living an active life even when I'm 85 years old!

So I began the process!  I'm getting rid of the excess.  Excess obligations.  Excess weight (slooow process, but it IS happening!) And I'm promoting more of the positives in my life....more family time, more downtime, more rest.  I NEED to have more exercise, but I haven't gotten there yet!

How about you?  Are there things you need to leave behind?  Things you need to walk away from?  Are there things in your life that are weighing you down and making it so you cannot do the things you want to do, or BE the person you want to be?

As 2012 is winding down, maybe it's time to stop and really look at your life.  What really is your TOP priority?  Is that where you are spending the majority of your time? Your effort? Your money?  Is that what you are working the hardest to nurture?

If you're not, it's time to make a change.  It won't be easy.  It won't be without pain and loss.  But if that one "thing" is really the most important thing, then you should certainly sacrifice the rest to put it first.  Because we really don't know what tomorrow brings.

One year ago today......

One year ago today we received Eli's diagnosis of PDD-NOS.  One year ago today, our family's life changed direction and started on a new path from which there is no return.  On the anniversary of that day, I look back and think about how much has changed.  

And how much has stayed the same.  

I think of all the Dr. appointments over the past year, and all the parent/teacher conferences and all the meltdowns.  I think of all that Eli has learned how to do by himself, the progress he's made, the accomplishments he's achieved.  I think about the two steps forward, the three steps back and how it seems like our lives just go round and round in this big looping circle, over and over and over, but somehow...somehow....we've still managed to move forward a little bit.  There's no following a straight line between point A and point B in this family's life.  Oh no....we spin round and round, but eventually we get there.

I think of how our family has grown closer, how we've learned more about acceptance and compassion, how we've extended this new understanding beyond our family and reached out to strangers with a kinder, gentler heart and shown them brief moments of love.  A smile.  A kind word.  Or simply by making eye contact and acknowledging them...letting them know we see them and we accept them as they are.

So this day has been an enlightening one for me.  It's been a reminder that a whole year has passed by....and how short a time that really is...and that we've only just begun.  It's only been one year...the first year... of the rest of our lives.  There's no end, but we've certainly moved forward in this journey, if only a small distance.  Our family is solid.  We embrace the future, the challenges, the joys, the Wins! and even the failures, because we learn from those and get smarter.

One year ago today, Dr. Bob told us our son had autism.  And look where we are today.

When you don't know what to say

I'm having trouble writing.

It's certainly not from a lack of things to say.  I could write volumes upon volumes of all that was are dealing with these days.  Somehow the things we're dealing with are far too personal to write about and share here.

Eli's been going through some very difficult problems, but to share them here with the world seems unkind.  I want to celebrate his accomplishments here.  I want to share some of the eccentricities which he displays here, so people recognize why and they accept him as is.  But we're going through changes and challenges that are troublesome these days.  These things have caused some major upheaval to our lives.  I don't feel I can share them here. I don't feel they are appropriate to publicly write about.  I feel they would be unfair and embarrassing for Eli, and I never want him to feel uncomfortable with the blog...he's been in support of it up to now, and I don't want that to change.

So while we struggle through these difficult times alongside E, I feel I am limited on what I can say.  And that makes it difficult to keep up the blog.  I pray you bear with me during these dry spells, and just keep us in your prayers as we work through the tough times.  A recent medication change may be helpful in correcting some of the tough stuff.  Maybe if it goes away and becomes a thing of the past, then perhaps I will feel comfortable in writing about it.

Here in a couple of weeks I will be going in to talk with the entire 5th grade class at Eli's school in order to explain Tourette Syndrome to them.

I don't even know if I know enough about TS to explain it!

I'm hoping the school counselor, whose idea this was in the first place, will help to give me some guidance.  So that should be an interesting experience and one I'll be able to write about!

Til then............