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.

Self-Regulation

Life has settled into a steady rhythm here, but it’s been one of management, not progress.  We’re making it through the day but not much more at this point, and it’s time for our family to take a breath and hit things head on again.

We had an excellent meeting with Michael’s RDI consultant last night, and we are working hard to find step one in his autism remediation.  Right now that seems to be self-regulation.  Michael is brilliant yet trapped in his own world thanks to the autism and almost completely without windows or doors right now thanks to his sensory processing disorder.  His brain will just not leave his body be, and the last week or so has been marked with his inability to sleep and his body’s sensory seeking behavior (crashing into things, screaming at any type of sensory input, the need for heavy muscle work, the complete lack of personal and physical boundaries).  We did go back to the doctor, and I’m hopeful the current treatment will significantly help but it still has not taken it’s full effect, and in the meantime, his brain seems to be struggling to find balance.

Our goal is to ultimately teach his brain and body to self regulate.  Our first method was a good start, but like with all trial and error methods we didn’t quite hit the mark with our first attempt, and now we’re adjusting our technique.  We’re working on separating problems of compliance from problems of self-regulation and attempting different approaches for each.  Again, it’s hard work that will most likely take a long time, but I’m excited at the prospects of watching him progress again.  I don’t like the plateau we’ve settled on or how long we’ve been there.

Is something in your way?  Does overcoming it seem hard or that it will take too long?  Crash into it anyway!  The prize at the end will be worth it!

 

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

Image

 

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.

Image

Image

And his sleeping partner.

Image

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

Happy Thursday!!

Tough Cookies

It’s probably a good thing I didn’t get a chance to write yesterday, because that would have been a sad, angry, pathetic blog.  I still get frustrated when I work hard to get up early to be alone and then am never alone.  But, God’s dealing with me on that, and I’m praying very hard for a change of heart in this area.

It’s been a tough couple of days.  Each kid is really giving it to me in his own way.  Michael has a cold and is being very autistic right now.  We had an hour long meltdown Monday that totally took the wind out of my sails.  Gabriel’s doing the terrible 2’s defiance thing and having a blast with it let me tell you.  He’s discovered he can move furniture, and every time I walk into the kitchen, I find him elbow deep into some food container, stuffing his face.  Then he refuses meals.  ::sigh::  I’m obsessively trying to keep my counters cleaned off for this reason.  At least that could be a good thing, right?

My toughest cookie right now is little William.  I am praying very hard for this guy, and I hope the next few days will be informative.  In addition to having a sensitive tummy and digestion issues which keep him from sleeping well, he has been starting to demonstrate some behaviors that in themselves seem harmless, but appear disturbingly familiar to when Michael was this age.  I’m seeing some headbanging and restless limbs, a crying cranky child where a happy one used to be.  We’re jumping on this one and having him observed on Thursday as well as a visit to the chiropractor to help with his gut.  I’m hoping and praying that this is all just the result of him having an upset stomach and will go away when we can take care of that, but part of me is bracing and readying for another sensory disorder child.  I’m OK with whatever the outcome, it’s in God’s hands and I know He has it, but the important thing for me is to find out exactly what’s going on with him as soon as possible.

Patience, discernment, wisdom, love.  It’s hard for me to practice these all at the same time particularly with sleep deprivation, and I forget myself constantly, but God is being loving and patient when I can’t, and I trust that He will be faithful to complete this work in me that He has started.

In good news, we have finally begun our RDI consulting, and I am SOOOOOOOO excited because Michael has been particularly trying the last few days.  Nate and I had to each take turns playing with him in an empty room with a single toy while our therapist hid behind a curtain and videotaped us (yeah, that wasn’t weird or anything), and we will go for our first training tomorrow night.  I’m really depending on this a lot to bring some peace into our lives and some knowledge on how to better relate to Michael.  I can’t wait to see how it goes!

Thank you for your encouragement and prayers.  I’m hopeful that this will be a great year and am still praying very hard to see God move in me and my family.

A Thoroughly Answered Prayer

I think God had a good chuckle at me yesterday.  I was praying for patience and endurance according to 2 Thessalonians 1:4, and He gave me a day to show me a few things about myself.

The kids were awful.  Michael was hyper and sensory, rubbing his face on everything including me, grinding and hitting, Gabriel cried all day (and at night too) and could not communicate what was bothering him, and William was teething and decided he wanted to be held and not sleep.  A client called to remind me that a project was due, and my house was full of toddlers in the afternoon since it was my turn to host our homeschoolers’ preschool gathering.  Talk about praying for patience!!  Why would I do that to myself??

I tried.  I really really tried.  I managed to keep control and not crack too many times, but it was all contrived.  My attitude was strained and less than loving.  My prayers of “God give me patience right now” that I tossed up to the ceiling from morning till night didn’t seem to help.

Now, in the quiet of the morning, I’ve had a chance to reflect, and I can see that I was trying to be patient, and that’s never enough.  It wasn’t the fruit of the Spirit flowing out of me naturally, but me relying on my own strength instead.  I had to repent because that’s not how God wants me to do this.  He wants His own patience and divine strength to flow through me effortlessly, the result of my changed character and the work of the Spirit.

So that is my prayer today.  That God would work on my heart so that I would not have to try to DO patience and love, but that it I would just BE patient and loving as a reflection of what He has done in my life.

God is so good.  After I prayed, He showed me this:

2 Thessalonians 2:13 “…because God from the beginning chose you for salvation through sanctification by the Spirit and belief in the truth” and verses 16-17 “Now may our Lord Jesus Christ Himself, and our God and Father, who has loved us and given us everlasting consolation and good hope by grace, comfort your hearts and establish you in every good word and work.”

I’m so overwhelmed by how forgiving He is, and how much He loves me.  His promises are amazing, and I’m thanking Him already for my new character because He has promised to give it.  I almost have no words.

I’m looking forward to what adventures He has for me today!  May your day be one of growing closer to Jesus.

Doctor’s Visit Update

I want to thank everyone for their prayers.  Our visit to the doctor was informative and successful, and Michael is definitely responding to his remedy.  Unfortunately things usually have to get a little worse before they get better, so his sensory needs are ridiculously annoying right now as his nervous system adjusts, but it’s comforting to know the treatment is working.  I hope to start seeing improvement soon.

I read 2 Thessalonians 1 this morning, and it was a reminder to stay the faith, even when things get rough.  God wants me to pray for grace and His power so I can live a life worthy of Him and bring glory to His name.  I’ve realized if my life is easy, with no hardships, there really aren’t any opportunities for God to show up and do something amazing.  If I want Him to be glorified in my life, I’m really praying for some trials, but He’s always going to give me what I need, even if I don’t know what that is, and that makes all the difference.

In other news, the kids all seem to have gotten over their colds and croup, for which I am extremely grateful.  Gabriel is saying new words every day and seems pretty excited about it.  He’s yelling/talking just as loud as ever, so that’s usually indicative of a good mood.  William’s practicing his new commando crawl, and he’s getting pretty good at it.  The poor child’s still fussing, I think I see about three teeth coming in right now, but thanks to the wonderful convenience of baby wearing, life goes on.

My camera’s broken (gotta get that fixed before Thanksgiving!) but our amazing friend Elissa took a family picture that I will share.  It’s very rare that all of us show up in one picture.  In fact, I think the last time we had a picture of all of us that wasn’t a pregnancy shot was when Gabriel was about William’s current age.

Me and all my blessings!

Image

 

Have a happy Monday and a great week!

P.S.  You can see more of Elissa’s stuff here: https://www.facebook.com/ElissaIDavidsonPhotography

I Need A New Habit

Michael caught a cold.  This is a problem.  Not because of the actual cold since Michael gets sick more graciously than anyone I ever saw.  He sits on the sofa quietly, watching movies and burning a low fever.  He goes to sleep and is fine in a day or two.  It rarely happens, and I never really have to worry about it or do anything when it does because his body’s pretty amazing at fighting off bacteria.

No, it’s the aftermath we have to live through that concerns me.  It blows my mind that an immune system as strong as his also has a very delicate constitution and affects his brain so deeply.  We’re in some sort of transition phase right now where Michael’s no longer actually sick, but his immune system is still grumbling about the strain.  It makes the poor kid crazy.  You’re mentally and physically exhausted after only spending five minutes with him.  He has no physical control over his body right now, and the slightest stimulation of any kind propagates a disproportionately huge reaction.

What does this mean?  It means that right now my happy, obedient child is trapped inside a body that is careening out of control.  If he hears an unexpected sound, he just turns around and nails the person next to him.  Not because he’s being malicious, but because it’s literally the only energy vent his body can find.  We were doing so well about teaching him not to whine, to speak nicely and clearly, and to voice problems that required help with solving, and now something as simple as me asking him to find his cup or his shoes dissolves him into a screaming heap on the floor.  His world doesn’t make sense to him right now, and his sensory processing is off the reservation.  He doesn’t understand what’s happening or how to cope with it.

This is where my scientific brain goes into hyperdrive.  I’m analyzing EVERYTHING to death.  What happened?  What caused it?  Where did he get sick?  What’s the best way to purge his body and get his system reset?  What did this action mean?  Did he actually mean to hit his brother right now or is this something his body can’t help?  Do I discipline or treat the sensory needs?  And let’s not forget the physical danger the two little ones are in right now.  I’m in damage control mode, and it’s rough.

The sad thing is my brain shoots down all these highways at light speed as I try to diagnose and treat.  And I should be doing that, that’s part of my job as mommy in this institution.  But you’d think by now I’d stop and pray first.  How do I not reach into the source of all wisdom and healing to meet all of our needs?  I’m ashamed to admit prayer only comes when I’ve exhausted all my human resources.

It’s time for a new habit!  My prayer is that my focus shifts from what I see in front of me to my God and all that He is capable of.  I want His wisdom, His perspective, and His peace before I wade into my messy chaos to deal with what I find in there.  Sometimes the simplest solution evades me, but this is a new habit I need.  I look forward to seeing how this change affects how I handle these challenges.