How We Survived The Holidays

Like many parents of special needs children, I found myself starting to worry about and even dread the holiday season this year.  If last year’s disaster was any indication of how December 2014 was going to be, I knew I was going to be in for an awful ride.  Just to make things more interesting, in addition to Thanksgiving and Christmas, our family has five birthdays (including Michael’s) in the last six weeks of the calendar year.  Because, you know, breaking routine and adding lots of excitement and parties to life is just what every autistic kid needs to remain stable.

Last year was the first time Michael was really aware of his birthday, so we built up the anticipation and went all out.  He got an Iron Man/Avengers themed affair and dictated what kind of cake and presents he wanted.  He was SO excited about it that he was sick for two months afterwards.  Then we went away for three days at Christmas where he was up all night in families’ homes and hotels.  January was hell.  It took him weeks to return to normal.

Then I’m a wild card too.  I love my family’s traditions, and I try to hang on to them as best as I can.  I love Christmas and the special family times and memories.  I really do enjoy it.  But hosting Thanksgiving and three birthday parties, taking the family away for Christmas, and thinking about purchasing presents for nineteen immediate family members (let’s not forget those birthdays too!) can really make my ADD go into overdrive.  I find myself running around without a plan and not in a good frame of mind to provide Michael with the stable environment and routine that he needs.

I was determined that this year was going to be different.  I learned a few lessons from last year and was ready to make some changes while keeping as much as I could about what I loved from the holidays.  Here are the changes we implemented.

  • We did not talk about Michael’s birthday at all unless he brought it up.  I did not mention a party or presents or anything.  He knew the day was coming up because he has a calendar on his wall with special events written on it.  (He’s been doggedly crossing off all 280 days on it so he knows when the new baby is coming.)  He requested some presents but I made no promises and downplayed everything.
  • The day of his birthday we did not throw a party.  Members of the family came and visited in groups of twos and threes, staggered throughout the day, and did not stay more than 20 or 30 minutes, which is Michael’s limit.  We had the whole day planned out, kept him busy, transitioned him from activity to activity, but kept things calm and low key as well.  There was no huge excitement, cake event, or momentous occasions.  He turned down offers of singing happy birthday and hugs and was very happy with all his new birthday presents.  He never got overly stimulated and the whole day was a happy and stress free affair for him.  Again, we did not talk about birthdays or parties afterward.

The birthday boy gets some cake.

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Icing cupcakes he made himself to give to his guests.

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Receiving a toy NASA shuttle that once belonged to his mommy and uncle.

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Getting help from Daddy to assemble a Lego shuttle and launch pad (see a pattern?).

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Getting a Toothless action figure at bed time (the one gift he had been begging for).

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  • Michael had very limited access to the other birthday parties we hosted at our home.  With six adults and nine children celebrating, the place gets pretty full and noisy, and Michael finds it hard getting alone time in his usual escape places.  Instead, he got to go out and have one on one time with a grandparent from the other side of the family for several hours while the party was going on at our place, and he would join us just for the last 30 minutes or so.  He wasn’t deprived of celebrating with the birthday person, but he wasn’t forced to deal with more than he could handle either.  He would usually come back in time to give his birthday present, eat some cake, and see the family for a few minutes.  It really worked out for him, and he wasn’t totally wired when everyone left either.  This was a really big win for us, something we are definitely going to repeat.
  • I kept up my routine for as long as I could.  Michael had lots of new toys, particularly Legos from his birthday, that kept him busy.  We did our morning homeschooling and afternoon movies.  I didn’t talk about upcoming events until the day of and tried to keep things normal and boring as much as possible.  He totally thrived.  I lost it the week before Christmas as I went nuts with last minute preparations, mostly leaving the children to their own devices, and I noticed his behavior declined in that time, but all in all, I gave him as much stability as I could, and he really rose to the occasion and kept it together.
  • We ended up not traveling this year.  The decision was mostly made by Nate’s job that required him to be local, and I was really bummed about missing out on my annual visit with extended family, but I could not deny that it was really the best move for the kids.  They just don’t sleep away from home and their behavior quickly spirals out of control as their sleep deprivation increases.  We spent a few hours visiting with family on Christmas day and quickly took the kids home as soon as they crashed around nap time.  They’ve been home in their beds every night and getting afternoon naps and it’s really kept things even keeled.

My only major slip up this year was I left a broken bottle of red food dye on the back of my counter on THE DAY OF CHRISTMAS EVE NO LESS and Michael got into it while I was out doing errands and he was home with a sitter.  The stuff leaked into his skin and he got a bad reaction, the same as if he ate some, and got out of control with his sensory seeking behavior (we got NO sleep that night).  Usually stuff like that lasts 48 to 72 hours, but with the use of some of our alternative medicine treatments, the reaction was substantially minimized and only lasted about a day.  I really considered myself lucky there.  He did very well Christmas Day while we were out visiting (again, new Lego set kept him quiet, happy, and busy).

Now I’m trying to catch my breath from the whole month of December (and catch up with the laundry, the dishes, the routine, etc.), but Michael has coasted through beautifully.  I’m so pleased.  It’s like the opposite of last year.  It was very hard work for me and Nate, trying to anticipate and plan for every little event that might upset his equilibrium but it was totally worth it.  We definitely learned what worked for us in terms of keeping things calm and easy for the kids to handle.  And we were still able to enjoy Thanksgiving and Christmas and spend time with family as well, which was very important to me and my years of tradition.

I’m so grateful for how things went, and hopeful about having enjoyable, peaceful holiday seasons in the future.  Here’s hoping you all had wonderful Christmases yourselves, and may you enjoy a fantastic New Year!

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Moving From Fear to Faith

I’d been living in so much fear the last few months, it really wasn’t pretty.  I knew it was the wrong way to approach life, but I just wasn’t sure how to change.

The inadequacies of Michael’s and my situation just seemed to face me everywhere I turned around.  He wasn’t doing well in school, and I was afraid that the school district would start to harass us as a homeschooling family.  His physiological situation wasn’t improving, which meant he wasn’t getting physical control of himself and moving through his remediation program, and I was afraid that he was just never going to improve (it hasn’t been our greatest year for that).  I had been so awfully bogged down with my first trimester in the fatigue and nausea, I was afraid Michael was losing critical time with homeschooling and therapy.  I was just so afraid that this year was setting us back in so many ways.  Everything I could see going on around me didn’t promise much hope for the future.

It’s a terrible way to approach your kids, doing things only out of fear.  Expecting the worst of the future every time you think of it.  I wanted to stop, and yet I couldn’t pull myself out of it.

A few weeks ago, God sent me a pretty strong and encouraging message to get me looking at Him again.  Our pastor preached from 2 Kings 6, the story of when an enemy king was coming to get Elisha and surrounded the city with his army.  Elisha’s servant saw the siege and was afraid of what was coming next.  Elisha prayed that God would open his servant’s eyes, and the servant then saw the heavenly army there too, just waiting to protect them.  Pastor called it facts versus truth.  Yes, there are some pretty serious facts about our situation.  Maybe there’s an earthly army surrounding us, maybe we’re sick, or our kid’s situation isn’t improving.  We’re not making stuff up, and it’s a reality we have to live in.  But it’s not the truth of our situation.  The truth is, no matter what we’re facing, God is not only greater than it, but present in it as well, working His miracles and purpose through it, if only we could see with eyes of faith.

I think I cried through the whole sermon.  I’d stopped looking to God to speak His truth into my circumstances and was paying attention only to what I could see with my human eyes.  I was literally clinging to worst case scenarios in my mind on a daily basis, and it was time to let that go and remember all the things that God has promised me about my family and all the things He has done for us in the past.

Our situation’s not vastly different, but there have been rays of hope throughout.  Michael’s still not doing well right now, but the calmer, more attentive him did break through for a few days and prove that he has been learning some of the things he’s been taught in homeschool and is making some good, slow progress.  He was able to relate in a few therapy programs, even if only for minutes at a time.  A meeting that I had been dreading with the school district actually went well and ended positively.  While a nasty sinus infection followed on the heels of my morning sickness, I had a couple of days where I managed the household and started to catch up on things and actually parent from my feet again and not from the sofa.

It all culminated this weekend.  Nate had an accident with a power tool that injured his hand and rendered it pretty useless for the next few days.  A few hours later, William fell from a chair and couldn’t walk.  As I was driving him to the ER, my brain was starting to spin down that worst case scenario road again.  Here we were, entering the holiday season, which I love but always brings lots of extra work and effort, and I was going to be pregnant, tired, and carrying around a baby with a casted, broken foot until January.  I could feel myself tensing up, blaming myself for the accident, and playing the if-only game, when I could feel God just stop me.  He reminded me that nothing that had happened this day had caught Him by surprise, that He had provided and cared for us in difficult times before and was certainly capable of doing so again.  Knowing that, and knowing that friends and family were praying for us and already offering help and support brought me peace, and as usual, God provided.

William got a clean bill of health, and with the aid of some painkillers started running around like nothing happened.  While Nate’s hand has been very sore, it seems to be on the mend as well.  My family came together yesterday at a birthday party in our home and helped us through all the household chores that Nate and I just couldn’t do between all the injuries and sickness.  I felt so blessed.  God keeps reminding me over and over again that He knows my situation and can handle it.

It’s a good reminder to have at this time.  As those of you with special needs kids know, this time of year is never easy.  All the breaks from routine and excitement from the holidays can be disorienting and overstimulating, bringing everything from meltdowns to regression.  I hated that I was starting to dread my favorite time of year.  But armed with some great tips from Michael’s therapist, and the proof that God indeed is getting us through all our things, big and small, I’m able to let go of a lot of the fear and try to let Him work through us and our situation.

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Inventing Games

Michael’s therapist is pleased with the progress he’s been making.  I too have noticed that aside from the sensory issues we’re actually cruising along alright for the moment with just a few bumps in the road here and there.  Being outside a lot this summer has been helping, something we could not do last year.  (Going out alone with a brand new baby, a two year old who could not follow directions, and an impulsive four year old was just not in the cards.)  He’s periodically asking to do school work, and while it’s just busy work he’s doing on his own, it’s getting him ready, his fine motor skills are improving, and I’m happy.

One of the things I have to really apply myself to right now is inventing educational games.  If I try to teach Michael traditionally, it is most definitely going to turn him off to school and we will in no way be able to develop a teacher/student relationship, something he’s not capable of right now.  He just can’t comprehend that someone has a concept that they want him to absorb.  His therapist wants to slowly start teaching him how to work in sync with another person.  This is not just doing something in synchronized motion or even just turn taking, but truly doing an activity with another person in such a way that even if he is just sitting and watching, he is still fully engaged in what the other person is doing.  He absolutely cannot do this even a little right now. This will slowly start training his brain on how to be a student.

While a lot of this stuff is accomplished in our kitchen or laundry room, I’m looking to invent a series of educational games for him so that I can tell the school district he’s learning his letters, numbers, reading, etc.  I’m not great at doing stuff like this in the spur of the moment, so I have to sit down and plan them in advance.  They have to have at least four different kinds of parent/child relationship role playing, probably include some sort of physical activity for some of them, be a topic that he’s actually going to be interested in to stimulate the ADD portion of his brain, and only last 3-5 minutes in length.  I also have to figure out a way to keep him from hyperfocusing on something he really enjoys as well.  Sooooooooooooo….. I’m really curious to see what I come up with!!

I’m starting to have a few regular parenting moments with the kids, and it’s really warming my heart.  We’ve never had these before.  Michael and Gabriel are finally starting to coordinate some of their play together, and they seem to really be getting a kick out of each other.  Of course they fight a lot more now like regular brothers too, but that’s another story.  Gabriel was coloring a picture of some dinosaurs I gave him yesterday, and he announced, “Look, Mommy!  I coloring blue!  See??  The astronaut fighting the dinosaurs!”  (You can totally see the Michael influence there.)  The two little ones seem to be going through growth spurts and are doing some extra napping in really random fashions.  All three of them are as brown as little roasted peanuts from being in the sun nearly every day, and when they’re actively engaged in an activity, they’re adorable.  It’s nice to finally be able to communicate with these little guys after so many years, and I’m slowly learning their triggers and am finally able to preempt some of their crises.  Combining that with me getting some help for my ADD and my ability to run the house a bit more efficiently, things are looking a bit better around here, for which I’m grateful.  It’s still not easy, but at least I don’t feel like I’m just moving from one disaster to another.

I even started the second draft of my novel.  Sure, the boys were splashing in the pool and the baby was crawling all over me when I was writing, but I did it!

Hope you all have a lovely Thursday.

Focusing On The Good Moment

I absolutely did not intend to go so long without writing here, but I have recently learned I cannot think about more than one thing at a time, and my attention had been drawn elsewhere.  I thought I didn’t have much to write about, but apparently I do!

First of all, I’ve been paying a lot of attention to this book: ADD-Friendly Ways to Organize Your Life by Judith Kolberg and Kathleen Nadaeu, Ph.D.  It is amazing, and it pretty much explains why I struggle with everything from time management to clutter management.  I’ve been slowly trying to implement the techniques of this book, and I’ve noticed that after only a week, things have been going a bit more smoothly around the house.  I’m going through the book a second time now and trying to focus more on certain elements.  I love it, love it, love it!  I can’t recommend it strongly enough if this is an area where you have struggled.

Another reason I haven’t written much is because I feel like I haven’t had anything positive to report about the kids.  William’s been cranky, Gabriel stubborn, and Michael’s regressed yet again.  Michael has been a particularly tough cookie the last two weeks.  There’s definitely something wrong or misaligned because the compulsiveness is back with a vengeance, he’s hitting, kicking, knocking things over, and smearing poop everywhere (when is THAT awful plague going to finally go away???).  I’m holding my breath till our doctor’s appointment in nine days.  So I’ve just kept my head down and tried to manage the boys, keeping them outside as often and as long as possible where their crazy doesn’t bother me as much.

I know this is a problem I have.  When all their baggage starts building up around me (and trust me, they generate a lot of it!), it becomes all I can focus on, and I forget how far we’ve come.  Well, God gave me this little gift the other day.

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Michael and I actually played one entire game of Candy Land together!!!!!  This may not seem like much of an accomplishment considering he’s closing in on six years old, but I got this game for him years ago, and not only could he not understand it, he didn’t get you were supposed to play it with other people.  He would just obsessively move pieces up and down the board, not even comprehending the direction of the path.  Anyway, he did awesome!  He took turns, he finally got what each card indicated, and seemed generally happy to actually share the experience with me instead of just doing it by himself.  It helped that the game only lasted about three minutes because he got one of those specialty cards that resulted in him skipping about 80% of the board in one turn and him winning the game.  He tried to play again and his brain just couldn’t maintain the structure that long, and he dropped off and started running the little guys up and down the board by himself again, but it was really neat to see a successful run.  It’s been so long, and we have NEVER EVER been able to play a game together before.

So we’re going to end on that happy note.  Hope you all have a lovely weekend!

My Name Is Sharon, and I Am Chronically Disorganized

Everybody’s taking quizzes on Facebook nowadays.  Well, I took one myself yesterday.

“If you answer Yes to the following questions, you are chronically disorganized…
– Has getting organized been a challenge for you most of your adult life?
– Does being disorganized negatively affect your quality of life in some way every day?
– Have you been unable to sustain organization?”  (Taken from the book Conquering Chronic Disorganization by Judith Kolberg)

Yes! Yes! and YES!

I LOVE this book!!

 

 

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I have ready many a book on decluttering and organizing in my life, but this is the first one I read that was written for someone whose mind does not operate well on conventional/traditional organizational methods.  It’s a short, easy read, and instead of writing theory, the book is literally just a collection of stories that exemplify various organizing techniques for the chronically disorganized.  For example, I had no idea that you could file your papers emotionally!  I have now constructed my first “shifting time” board.  I am super excited and will reread this again before I give it back to the library.

I would highly recommend this for anyone who has tried to fit their lifestyle and organizational methods into a system someone else premade and has been unable to maintain it.  This book suggests inventing ways to manage your life in a fashion that suits your mind’s bend, based on your learning style and needs.  Great read, Conquering Chronic Disorganization by Judith Kolberg.  Check it out!  I shall let you know how my experiments turn out!!

Vacation Started a New Journey

Quick post today: I learned something on vacation.  It seems like it should be intuitive, but I guess it wasn’t for me.

I need help.

I’m still learning SO many things about myself with regards to my own limitations.  I’ve gone on for so long assuming that I function like those around me, and it’s just been in the last few months that I realize how different my brain is.  The more I try to carry on like everyone else, the more I struggle and the more stressed I become.  I don’t cope with things the same, and I have different stressors.

What this boils down to is I’ve realized I have no idea how to cope with my stress.  This is not a mental thing I’m talking about, this is more of a physical one actually.  In doing some basic research this morning, I learned new things about how in spectrum folks, the sympathetic nervous system isn’t disengaging and allowing the parasympathetic nervous system to turn on and actually bring physical calm back to the body after a stress has occurred.  So in my life, all the random little things (in addition to all the crazy huge things that come with living with disabled children) that happen that folks can recover from (i.e. loud noises, unexpected phone calls, disruptions in the daily schedule, etc.), I’m not getting over them, I’m accumulating them.  Which is why by the end of the day I’m usually a mess that needs some crying time under a blanket in a quiet room.

God has provided some wonderful young people to our family that like our kids and are VOLUNTEERING to spend regular time with them, and I am totally taking them up on it.  I also plan to start researching help and information on adults (not just for my kids), and see what I can learn about things like organization and stress management for those with ADD and Asperger’s.  I think if I learn how to function with the specific “bends” of my mind instead of just carrying on in the what always appeared to be the traditional way of handling things, my stress levels will go down.  I’ll find counselors who deal with spectrum adults if I have to, but I am really excited about learning to cope with the things that go on around here.  Usually my mind gets so overwhelmed that I just completely shut down and let chaos reign, and that’s not the kind of wife and mom I want to be.

So here’s to a new journey and learning more about how God made me. 🙂