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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A Change In Plans

Nate and I had ended the summer thinking that we would focus our energies on homeschooling this fall and working Michael’s RDI program.  I was going to learn how to cope with my increased ADD symptoms.  I had very high hopes for lots of change.

Well, it came.  Michael suddenly regressed again, pretty severely.  Oh, and Nate and I got a little surprise.  Turned out I was pregnant.

Soooo, September and October ended up looking very differently than originally intended.  My first trimesters are always fairly brutal, and I spent two months on the sofa watching Michael spiral out of control and barely had the strength to deal with it.  It was a pretty dark time for me.  I felt very helpless to do anything about his situation and a bit like a negligent parent in that I could not provide the structure and routine at home he so obviously needed.  Feeling nauseous and exhausted 24/7 wasn’t really helping my outlook either.

In hindsight, I can see God was still taking good care of us and walking with us.  As usual, our family stepped up to the plate and gave us invaluable assistance.  God also put us on the hearts of some church people as well, and suddenly we had food and help at a time when I could do almost nothing.  He encouraged me along the way through various people and gave me the words I needed to hear to persevere.  We got some answers to Michael’s health picture, and he began to stabilize.  He still has a way to go, but at least we’re moving in the right direction again.

At twelve weeks pregnant, I’m finally starting to feel better.  I can do things!  Michael’s getting a more focused homeschooling program, and my house isn’t a complete disaster.  The kids are eating real food instead of cereal.  Nate and I are totally thrilled at the prospect of another baby joining us soon, we’d been considering another addition in the future anyway.  Things are still tough, but improving, and God’s hand and encouragement has been everything.

It’s been awhile since the last post, so here are some pictures of my beautiful babies!

Gabriel is doing fantastically.  He has a very intense therapy schedule this fall (six sessions a week!), but he’s showing vast improvement.  His speech is intelligible most of the time, and the OT work has improved his coordination by leaps and bounds.  His special instructor is working on his ability to process information and follow directions, and he is showing progress there as well.  I feel like he may not need therapy much longer.

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I absolutely cannot resist this face.  William is the welcome wagon at our house and always runs to the door with enthusiastic greetings for whoever comes.  He is developing by leaps and bounds.  His vocabulary is impressive and his relational skills are just plain fun.  God was good, and after an acupuncture session, his liver issues seem to have been taken care of, and he is no longer in constant abdominal pain.  Of course, he’s making up for that by growing four teeth in right now, but he’s a trooper about it and completely adorable at the same time.

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Michael is into all things rocket science right now.  He can’t really read (I’m beginning to suspect we might be dealing with some sort of visual processing problems) and numbers still seem kind of abstract to him, but he is always happy to lecture on shuttles with rocket boosters and fuel tanks.  We watch lots of documentaries online about NASA (thank God for the internet), and it’s something fun we can do together as rocket science was one of my interests in college.  We do many outer space themed homeschooling lessons, it’s a great way to keep his attention.

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I was just thinking of the chorus to Tindley’s’ hymn “Beams of Heaven”.

“I do not know how long ’twill be,
nor what the future holds for me,
but this I know: if Jesus leads me,
I shall get home someday.”

We’re gonna get there.  Somehow and someway.

I’ll try not to stay away so long this time.  Happy Thursday to you all!

P.S.  Shameless plug here:  Nate started writing a blog recently about what it’s like to be a dad with special needs kids.  It’s aimed at fathers, to encourage them to stay the course.  Here’s the link!  Not A Curse

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. 🙂

From The Bottom Of My Heart

I have to thank all of you for hanging tough with me this week.  It was just terrible, one of the worst I can think of in a long time.  The stress, the emotions, my own brain causing me pain and trouble every step of the way.  This was a downright awful week in my life to have ADHD and Asperger’s myself, let me tell you!  I had a meltdown about three times in the past few days, so let’s not even think about how many my kids had.

You, my friends, are all amazing.  You let me cry, you give me hugs, you pray for me, you call me and Facebook me to make sure I’m still doing alright.  I love that you’re OK with me being a mess and that you 100% encourage me and help me along the way.  I absolutely would not survive times like these without you, and I am so incredibly grateful that God has given you all to me as my support team.  You really are a vital part of my life and therefore in the lives of my kids as well.  Not only are you letting God use you and giving me the strength to go on, but you’re also inspiring me to pay it forward when the boys are grown and it’s my turn to be there for someone else.

I made it to the end of my gauntlet, and now I get to unplug and run away with Nate for a few days.  God bless you all, and really, from the bottom of my heart, thank you all so very, very much.

With love, 

Sharon

A Day In The Life

The last couple of days have definitely been interesting.  You never know what kind of day you’re going to get with Michael.  Some days his brain and body are in sync and you’d never know he was autistic, but then you have days like today….

We started out OK, but he totally hyper-focused and colored for two hours, and I should have known I’d pay for it later.  He went nuts and overcompensated with the sensory processing disorder kicking in.  He was running everywhere, touching things compulsively, pushing his brothers, screaming, squeaking, and losing his communication and self control.  When his therapist showed up in the early afternoon, he sneaked into the cookie jar and ate six Hershey kisses while she and I were in one of the bedrooms talking.  What followed was a 45 minute meltdown which required physical manhandling.  Thank God the therapist was there, it was the first time she had seen him lose it that badly.  She showed me how to wrap my body around his to keep him from breaking free and punching me.  She also kept the other kids out of the room every time they tried to come in.  Michael really took me for a ride, screaming, crying, writhing, wrestling, and flailing with almost no breaks for three quarters of an hour.  We were finally able to talk him down (I would have never been able to do this if I was alone), but by the time we were finished, I was exhausted, shaking, and nearly crying myself.  Thank God Nate came home this evening in time to handle another meltdown because honestly, I don’t think I have another fight left in me tonight.

As I write this, I’m sitting in Gabriel and William’s room, trying to train Gabriel to stay in his bed.  He’s new to the toddler bed and he seems to enjoy keeping William up till very late and jumping into his crib and squashing him.  It’s been a very long day and there’s still a lot to get through tonight.

I have to say though that it helps to remember that this is all important.  It’s a training ground and the foundation for discipline and growth for all of them.  The hard work and effort is totally worth it, and I look forward to seeing the fruits of all the labor in the hopefully not-too-distant future.  I try to use these opportunities to hold these boys up in prayer and remember that none of this took God by surprise, and none of these experiences is wasted.

Hang tough, all of you.

Birthdays and Sleep

Michael’s been missing his birthday, even though his party was six months ago.  This is something my brain totally doesn’t understand but yet has to deal with.  Just about every morning he wakes up, when I greet him with a cheery “Good morning!”, he responds with “I’m sad.  My birthday’s all gone.”  Sometimes that’s it, but sometimes it escalates into more crying, more anxiety, total withdrawal from what’s going on around him.  It doesn’t sound like a big deal, but now he can’t get dressed.  He can’t pay attention.  He can’t make it to the breakfast table.  And I have two little ones who also need changing and dressing and feeding who are crying because they’re hungry too.  It can be a mess.

I have no idea what this is.  I’ve heard autistic people can sometimes have a delayed emotional reaction.  If this is that, it seems pretty extreme.  It could also be that he has a ton of family members (yes, it’s actually a ton), and they’ve all been having birthdays recently, so maybe it’s just triggering a memory for him.  Or it could be he’s upset about something else and doesn’t have the vocabulary to tell me what it is.  As a fairly concrete person myself who just likes to march in a fix a problem, this whole affair is a bit too nebulous for me.

A lot of family and friends have had some nice ideas about hosting little birthdays, or unbirthdays, and the thought is nice, but it’s made me a little wary.  I have no idea how that will translate into his head.  He would never understand an unbirthday.  In his mind, if there’s a party, cake, or gift, it’s a birthday.  Then I wouldn’t want him used to having “birthdays” more often.  And let’s not forget that he was SO excited about his real birthday last November that it actually made him sick and more autistic for almost a whole month after.  It doesn’t help that it’s right on top of the Christmas season.  He didn’t recover from the all excitement until February.

His RDI therapist had some great ideas about how to cope with this, and they’ve been working!  One time, when we were in the living room, he spontaneously fell into my lap having one of these spells, and I picked up a plastic toy pie from the floor, sang him happy birthday, and had him blow out the pretend candles.  Because we used a toy, he knew it was only make believe, but living the memory seemed to be a temporary holdover for him.  She also recommended we show him pictures of his party, so I did that, and he was thrilled to see his cake again.

*Side note: This cake was a huge deal for him.  He started asking for an Iron Man cake four whole months before his birthday.  He reminded me EVERY SINGLE DAY that he had to have an Iron Man cake for his birthday.  He was SO excited when a friend came over to help me make one (because I had no idea where I was going to find a dairy free Iron Man cake, and I wasn’t paying for a special order).  He went nuts and loved it, and now it’s one of the things he cries that he misses.

The famous cake

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We’ve also been trying to help him sleep better at night.  Despite my effort to keep him outdoors for hours at a time, his body is often quite restless at bedtime, and he won’t fall asleep till hours after he’s been put to bed.  I’ve noticed he’s often much calmer in enclosed spaces, so we pulled the baby’s pack ‘n play out of the attic, filled it with blankets and pillows, and that’s his little man cave for when the world’s a little too overwhelming for him.  He seems to alternate between the pack ‘n play and his bed throughout the night, but he’s not calling out for us or disrupting his brothers quite as often, so this has been a good development.  He’s too big for the pack ‘n play and really needs a larger “sleeping box” at this point, but we’re still in the planning stages of that.

Last night, Nate and I came home very late from church, and my parents had put the children to bed.  True to form, Gabriel and William were totally asleep, and Michael was still energetically bouncing about, unable to relax.  When the birthday talk started again, I printed out a little page with his party pictures on it and put him in his pack ‘n play with the page.  He was so happy just looking at everything and narrating each of the pictures that I thought for sure he would be up for at least another hour.

Five minutes later, I found this.

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And his sleeping partner.

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We do whatever we gotta do to get some sleep, am I right?? 🙂

Happy Thursday!!