David and Autism Awareness

Where does the time go?  Oh – laundry, dishes, meal times, snacks, playgrounds, play dates, learning, kisses, hugs, church, grocery shopping, bedtimes, baths, fishing strange things out of the toilet, avoiding the lego obstacle course on the way down the hall – oh yeah.  It makes sense now.

Still, I intend to squeeze my writing back into these crazy life.  I miss the outlet of writing down my thoughts and chronicling the adventures of our family.  Homeschooling takes a lot of time and work, yes, but I also want to write about it and share my ideas as well as my frustrations.  Autism is a journey with twists and turns that keep us on our toes, and I am disappointed in myself that I haven’t taken the time to write about where we are in that journey lately.

April, National Autism Awareness Month, would have been an ideal time to put up a blog post detailing the latest in David’s progress and improvements.  As I do every April, I chose a favorite photo of David from my albums and tinted it blue for my profile pic on Facebook.  David came up behind me while I was posting the photo.  “Hey, why am I all blue?” he questioned me, giggling a little.  I explained that April was a very special month, and in particular, I liked to join the “Light It Up Blue!” campaign each year to bring more awareness to autism.  He was very quiet after that explanation.  I thought perhaps he was confused by the word awareness and hurried on to clarify that it meant a knowledge of and interest in a subject or cause.  He interrupted me to say in a very matter-of-fact manner, “Huh.  I always thought autism was spelled with an o and it’s actually an au! Weird.”

And that’s my David for you, always thinking about things in his way and often seeming to completely miss the point.  Later, I will often discover, he has absorbed what I said and will discuss it with me then, but in the moment, he will frequently choose to talk about something else, often unrelated.  His one-track mind can prove very useful in school when he is excited about the topic at hand.  Then he will spend hours immersed in the subject and willingly do writing and art and all sorts of things that he normally resists.  However, if  I am trying to change the subject, it becomes quite difficult and sometimes impossible.  This is a problem when we are all tired of hearing about Mega Man, Ice Man, Fire Man, Stone Man, and all the other characters that I ought to know by heart by now.  I am attempting to teach him to be more aware of others around him and to allow them to talk about their interests too.  This is challenging for him.  Even if he remembers to give the other person a chance to speak, he is impatiently waiting for his turn so he can get back to talking about what he is interested in.  Recently, at our church home group, I saw him walk over to a group of junior high girls.  He jumped right into his current favorite topic with no preamble and no room for anyone else to talk.  I watched, resisting the urge to step in and help.  The girls were doing their best to look attentive, but as the minutes ticked by and he showed no signs of winding down, they got a little desperate.  Finally, one of the girls interrupted him. “Hey, David, I bet you can’t count all the bricks in that fireplace,” she challenged him.  It worked!  While he turned to look at the fireplace and start counting the bricks, the girls made their escape to another part of the house.  He was unfazed by the girls’ evasion techniques and went on to find another unsuspecting victim. 🙂  In instances like these, I want to shout “He’s autistic, okay? He has a hard time going off topic and can’t read social cues!”  But of course I can’t.  It’s not an excuse, and I certainly don’t want people to pity him.  He has to learn how to operate in these social situations.  And how many times have I, his very own mother, pulled the same trick to get out of talking about the same topic again??

David turned eight at the beginning of April, and he is now standing as tall as my shoulders.  He is quickly changing from little boy to growing young man. He is making tremendous strides in physical therapy and occupational therapy.  In September, he could not catch a ball with one hand and could barely throw it with any accuracy.  Now he does both with confidence.  His balance is better, and his fine motor skills are improving. There is still a lot of work to be done to build up his core strength, but we are working on that with various exercises each week. When we were doing Monday School with our homeschool co-op, I received great reports from his teachers.  He had one class – an art and literature class – that he particularly struggled in because he gets easily overwhelmed by projects and creative thinking.  His teacher was patient and helpful, and he learned a lot.  I asked him what he learned and he said, “Not to take an art class again.” Ha!

People love being with David and working with him.  He is charming and sweet and really does love being with adults.  I love having a conversation with him, trying to get a glimpse into that complicated head of his.  I cannot imagine him without autism – it is an important part of who he is. We will always be looking for ways to help him and encourage him along this journey.  I feel blessed that God saw fit to give him to us, and I do not take my duty and my privilege as his mom lightly.

(For more information on communication difficulties and difficulty reading social cues for autistic children, check out this helpful link at Autism Speaks.)

Push or Pull?

I glanced at the clock.  I had ten minutes before I had to be back at my station – plenty of time to find my kids at their respective tables, give them a hug, and make sure they were behaving. Michael was so engrossed in his friends and his sandwich that he barely gave me a high five.  Gabi squeezed me tight and rattled off a long list of all the things they had gotten to do already that day.  As I approached David’s table, I saw immediately that something was wrong.  His bright orange Beavers cap was pulled down over his face, and he was hunched up against the table.  I tapped his shoulder.  “David, hi buddy, are you having fun today?”  I saw the tears brimming in his eyes and immediately regretted my cheerful, nonchalant greeting.  “Oh honey, what’s wrong?”  I wrapped my arms around him and tilted his cap back.  The tears fell then, in torrents while he held my arms in clenched fists and begged for me to take him home.  I was taken aback when I saw the intensity of his emotions.  I tried to calm him, to give him a safe place to tell me what had gotten him in this state.  He said something about being a bad boy but the rest was too muddled for me to understand.  I glanced up at the young counselor seated across the table.  “Has he been having a rough morning?  Did anything happen?” I asked, desperate to figure it out and make it better.  “No, he’s been great.  He seemed like he was having a lot of fun with us.”  I looked back at David, whose inconsolable face broke me.  I started crying too, hurriedly trying to brush away the tears and angry that they had sprung up when I least needed them.  I was supposed to be the voice of reason, the one who could convince my kid that he was indeed “having fun.”  The older counselor for the group walked up to the table.  She listened to my concerns and said that David had been enjoying himself in his classes all morning and that she was quite sure he would continue to have a good day.  She was good at the reassuring part.  I wanted to tell her that I’m not one of those moms that hovers over my kids all the time and never lets them cry or have a sad moment, but with my own tear-stained face and shaking hands, I knew I would not be convincing.  David still wanted to go home.  I had to be back in my classroom soon.

This was my dilemma.  Do I encourage my child to step outside his comfort zone in the hopes that he will find it enjoyable and hence want to do it again, or do I identify that he has set a boundary for himself and this is literally as far as he is able to go today?  It certainly wasn’t the first time I had encountered this problem when we were in an overwhelming environment.  After all, having autism does not mean staying home all the time, never interacting with others, and only eating hot dogs.  We “regular” humans stretch ourselves frequently by trying a new food, attempting to make a new friend, experiencing a new class at the gym, conquering a fear, etc.  In the normal world, autistic people have to venture outside their comfort zone all the time.  It is exhausting for them, but it must be done if they are to function in our society.  Social situations, especially large groups, can drain the energy and good mood right out of David.  In fact, it’s one of the reasons we homeschool him.

All parents have this task of respecting their children while also pushing their children to greater things.  It is a delicate balance.  Whether your child is autistic or not, you have to decide what things to urge on and what things to respect and hold back.  If your child has stage fright, you may try to coax them to do the play anyway in hopes of conquering their stage fright.  Alternately, you may suggest another activity that doesn’t require them speaking on stage.

I looked David in the eye and said, in the most reassuring voice I could muster, “Buddy, I have to go back to my class now.  But your group is coming to my class very soon.  You’ll get to see me there.  And if you still want to go home then, I’ll get a replacement for my class and take you home.”  His hands still clutched my arms, but he gave me an almost imperceptible nod and sniffed loudly.  I reluctantly walked away from his table and returned to my classroom with an uneasy feeling that perhaps I hadn’t made the right choice.  I went through the motions of the next group’s class while watching the door, waiting for David’s group to arrive.  My head told me that he was okay, but my mama heart wasn’t sure.  When he came bounding through the door and nearly crashed into the table with his excitement, I sighed with relief.  He threw his arms around me in a big, little-boy hug and exclaimed that my class was going to be the best and did I see that there were army men on the tables and were we really going to get to eat snow cones?

The rest of the afternoon passed in a blur of homemade snow globes, melting ice experiments, and excited little children. I gathered up the kids and their armloads of crafts they had made and headed home.  He had done it!  He had managed to find a way over his impossibly high hurdle, and now he was done.  In celebration of his victory, I made the executive decision to skip karate class that evening.  That night, after baths and brushing teeth and bedtime stories, I talked to David about his day.  Now that he was out of the overwhelming environment with all the noise and activity, he was able to look at it much more objectively.  “Tell me the best part of your day,” I encouraged him.  He answered that it was definitely the snow cones.  “Now tell me the hardest part of your day.”  He looked defeated.  “Game time.” I realized that he had been caught in the trap of comparing himself to the other kids.  Even though he hadn’t been teased or bullied in any way, David was starting to notice the differences between him and his peers. I took this as an opportunity to lift up my son’s strengths instead of focusing on his struggles and was quick to tell him what made him so special to us.  “You’re getting really good at reading.  You are awesome at playing Megaman.  You build the coolest things with your legos.  You are such a good big brother.  You like to help people.”  I turned to Michael, who shares a room with David, and asked him to chime in.  “I like David because he’s really good at being funny.”  I saw David crack a smile.  It means ten times more when it comes from your little brother than from your mom – that I know.

We haven’t solved anything.  I don’t know what I’ll do next time this kind of situation pops up.  But taking the time to recognize what happened, why it happened, and where it happened even will help.  It’s in God’s hands, and I need to recognize my need to go to Him first before I google “autism helps in social situations” or even before I talk to my friends about it.

“Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary?  There is no searching of his understanding. He giveth power to the faint, and to them that have no might, he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall.  But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary, and they shall walk and not faint.” Isaiah 40:28-31

Holey Socks!

Today we left the land of no school, late bedtimes, way too much video game time, and too many sugary sweets to step back into normal routine and real life.  It was a challenge to get the kids back on schedule and motivated with their schoolwork.  Chores and projects needed to be started, and of course I threw in a trip to the library because nothing says “let’s really make it a Monday” like trying to drag four cranky, depressed-that-Christmas-was-over kids anywhere.  As homeschoolers, we love the library, but little Hosanna just had to put on a grand (and very loud) puppet show in there today.  Another child who shall remain nameless announced to the whole library that he had to poop.  All of them chanted and begged for donuts from the shop inside the library (I know!).  We got back from the library, ready to take another half-hearted swing at the housework, when I realized that it was karate day.  Once again I wanted to high five(in the face) the mom who had the brilliant idea to sign up her kids for karate at 5:00 pm on a Monday!  Genius – that’s me.

So began the hustle and bustle of hunting down the boys, giving them their gis to put on, reminding them seventeen times to please put socks and shoes on, and trying to get them out of the house at a reasonable time.  Getting my boys to stay on my time schedule is hard enough; getting my autistic kid to do anything without being told ten times is pretty much impossible.  I was so grateful to leave the house on time that I didn’t bother to check David’s socks and shoes.  I hoped he was wearing them but didn’t care at this point.  We got to the dojo with a few minutes to spare, and the boys scurried about taking off their shoes and talking to their buddies.   I sat down with the other parents and turned my phone off.  When I take Gabi to ballet, I can sit there and check Facebook on my phone or read a book.  At karate, parents are expected to sit quietly, watch the class, and sometimes even participate.  Class started, and I looked at David to make sure he was paying attention.  It was then that I noted the two different socks he was wearing.  One was actually his dad’s – a nice black dress sock with a gold toe.  The other was a white athletic sock that looked as if it had seen better days.  Nice, I thought to myself.  I hope the other moms don’t notice.  Of course, Sensei called David up to the front to lead the class in an exercise.  He chose to do a series of leg stretches that showed off each sock alternately as he switched from leg to leg.  Black sock, white sock, black sock, white sock. .wait, is that a giant hole in the bottom of the white sock??  I was completely embarrassed that I had brought my kid dressed like that to karate.  What must the other moms think?

Then a mom leaned over and asked me if David was my son.  Yes, I answered, slightly chagrined.  “Oh good,” she said, laughing a little.  ” It is so good to see that I am not the only one.  You would not believe how many times stuff like that happens to me.”  Relieved, I laughed with her and looked again at my son, who was proudly showing off his skills and was blissfully unaware that mismatched socks was a social taboo.  That moment reminded me that I was not alone in having these crazy days.  Someday, it will make a cute story to tell (hey, I just put it on the internet!).  Besides, that whole perfect mom thing is a myth anyway.  I’m only perfect 99% of the time. 😉

(Full confession here: I was a mean mom and made him throw out the holey sock when we got home.  He didn’t want to because he “got good air” when he was doing his kicks and stretches.  I reminded him that he could be doing karate barefoot, which would be the best air of all.)

(Also, I have worn mismatching socks from time to time when I was absolutely positive my pants legs would cover them.  I guess he comes by it honestly.)

A New Season on the Spectrum

It was the end of another busy Monday.  I was bustling about finishing up dinner dishes and hurrying the kids through their bedtime routines.  In the dining room, David was sprawled on a bench, focused on his new Lego minifigures.  I walked past him toward the laundry room, arms full of damp towels, when I paused by the bench.  He was shirtless, and as he leaned heavily on one side of the bench to support himself, I saw that his upper arms were thinner than his forearms.  Much thinner, in fact, and I thought it strange that I had never really noticed that before.  His back was hunched and even sunken in a little.  I reminded him to sit up straight, and he grudgingly raised his upper body while still leaning to the side for support.  I realized that his muscle tone was sadly lacking.  Although not uncommon for kids on the spectrum, I certainly did not want to wait any longer to help him build up those muscles, and in the process, build up his confidence in participating in activities.

When David had first been diagnosed with autism, he qualified for physical therapy and fine motor therapy with a specialist at a wonderful little place called Neurotherapeutics.  For a year, I took him in once a week to work with his therapist Sally Ann on balance, muscle control, texture sensitivities, and more.  She helped him gain confidence in his body and worked with him on eliminating the toe-running and the constant falling.  In short, it was amazing, and we were very disappointed when insurance failed to continue covering those therapy sessions.  Life went on, and now, three years later, I was seeing a need for more therapy and wasn’t sure how to go about getting insurance coverage again.

But God always works these things out, doesn’t He?  The very next day, David came down with what I was sure was strep throat.  I managed to get him in to see our pediatrician that same day to confirm it, and while we were there, I asked her to take a look at his muscle tone and give me a professional opinion on what I should do next.  She wasn’t particularly concerned with what she saw, but she wanted me to have some peace of mind.  I walked out of that doctor’s office with a prescription for strep throat meds and a referral to the physical therapy department.  I was told that it could be weeks and even months before they would call to make an appointment, but the next day we were able to get him in for an evaluation with a physical therapist.

At that appointment, as I watched him uncertainly navigate the balance bar and struggle to toss the bean bags in the direction she instructed, I knew we were pursuing the right thing.  He needed this.  The therapist gave us lots of exercises to work on at home, with goals like “He will be able to successfully complete one sit-up at the next appointment” to guide us.  David was not thrilled at this new burst in physical activity.  He had always pulled the “give up right away” move in the past, but now he had to do bridges and “Supermans” and sit-ups.  I made him carry in the gallon of milk when I bought groceries and constantly challenged him to run wherever we were going.  By the third appointment with Suki, David started to look forward to therapy, and I was seeing some small changes already.  At that appointment, Suki had good news to share.  She had sent a referral to Neurotherapeutics, and we would be able to set up an evaluation with them soon.  Sure enough, Neurotherapeutics called to set up the evaluation appointment and to inform me that we already had insurance approval for twenty sessions with them, both physical therapy and fine motor therapy.

David goes to his evaluation there in a few days.  I am eager for him to get this help and thankful for the opportunity of it.  On Suki’s recommendation, we also got him into swimming classes to further strengthen his muscles.  All of this is a reminder to me that we have to be vigilant and stay on top of this whole autism thing.  When opportunities come up to help him, I want to be ready to take advantage.

And he’s convinced he’s going to be as strong as Ironman, so there’s that…

The Ten Commandments of Motherhood: Part One

(this lovely shot taken on Mother’s Day 2012.  My hair was super dark and the kids were super uncooperative!)

Long long ago, when I was desperately navigating the world of junior high and trying to figure out who I was and how I fit into life, I realized that, someday, I was probably going to be a mother.  It seemed an altogether terrifying and almost exciting realization, and I started subconsciously noting and observing what the mothers around me did and said.  By the time I had gone through college, the single life for a while, and then marriage, I had a set list of ideas in my head about how this whole motherhood thing was going to pan out.  The Ten Commandments of Motherhood, if you will.  Then sweet little I’m-going-to-turn-your-life-upside-down Gabrielle was born, and I promptly forgot all about that list.  I was just trying to survive and get through each day without doing any permanent damage to my new offspring.  Kids #2 and #3 came in fast succession, making my life a whirlwind of feeding, changing diapers, attempting potty training, buckling and unbuckling car seats, sleep training, not sleeping, and hanging on for dear life.  When Michael (kid #3) turned two, life took a turn in a different direction.  David (kid #2) had just been diagnosed with autism, and I spent hours and hours researching what I could do to help him.  As I shuttled him from physical therapy to speech therapy, I discovered that all my ideals of motherhood were not so cut and dry as I had thought.  I became very self-conscious of how other people viewed my parenting skills.  I worried all the time if I was doing the right thing for each of my kids.  Michael decided that then would be a great time to initiate the “terrible twos.” (and threes, for that matter)  I felt constantly that people were judging me as a mother every time Michael threw a big fit in the middle of a public place.  I cried myself to sleep some nights when I realized that every interaction I had had with my children that day seemed to be negative, not positive.

It was time to confront that list – the Ten Commandments of Motherhood.  I had never actually written them down – it was more of a group of ideals floating around in my head – but now I knew I must write them down and face them for what they really were.  Some were outright lies.  Some were truths shrouded in impossible expectations.  All of them were holding me back from being the mom God intended.  As long as I was focused on that list, I couldn’t be focused on the One who could help me the most.  I opened my journal and began writing, hesitantly at first.  Then the words came pouring out.  It was such a release, and just writing them brought balm to my spirit.  I faced each commandment, one by one.  I challenged it, asking God to show me the error and the truth.  I studied His Word fervently.  And slowly, one by one, these obstacles melted away.  That’s not to say that they still don’t show up from time to time, taunting me in my weak areas and shaking my confidence in motherhood.  But, mostly, I was able to let them go.  When God blessed us a year later with our baby girl Hosanna Joy, I felt so much more relaxed and confident as a mother.

My Ten Commandments of Motherhood started off with this doozy:  “I will always know what to do when a parenting challenge comes up.”  I truly believed that one, though.  I think I actually did not believe that many parenting challenges would come up.  When Gabi was born, she introduced a whole slew of problems for which I was not prepared.   Breastfeeding was hard; she never seemed to sleep.  At eighteen months old, she threw her first big, foot-stomping, screaming fit right in front of my parents, and not only was I completely mortified, I had no idea what to do.  I guess I just thought that when I became a mother, I would automatically know what to do all the time.

God says, “But if any of you lacks wisdom, let him ask of God, who gives to all men generously and without reproach, and it will be given to him.” (James 1:5)  I had to learn that it was okay to ask for help – that I didn’t know all the answers myself.  I had to learn that every parent faces these issues – that I am not alone.  Most importantly, I had to learn that sometimes, there just isn’t an answer.  Sometimes I just have to do the best I can and trust God to take care of the rest.  And that’s hard.  It makes me feel out of control.  It shakes my confidence as a mother.  It can drive me to worry if I forgot about God’s care and providence.

But today?  Today I face my day, knowing that things will happen that I will not know innately how to handle.  I’m okay with that, because the One holding my hand not only knows what is going to happen but also provides the wisdom and strength to face it.

Are you on this journey of motherhood too?  I hope that sharing my struggles will be a help to you.  I’ll tackle some more of the ten commandments of motherhood in future posts.

Our Three Year Journey on the Spectrum

When our son David was diagnosed with autism shortly after he turned three, I initially experienced a giant sense of relief.  Now we had a name for it.  Now I could understand it better – understand him better, really – and now we could have some plan of action for his life. A month or so passed before I realized I was experiencing a different response to the diagnosis.  This time it was grief, and I was startled by the suddenness and the severity of it.  I grieved for the things he would never be able to do.  I sorrowed over the fact that he and I may never have “normal conversations.” I wondered what the future really had in store for him, and ultimately I agonized over the fact that I felt like I was being a big drama queen.

 

That first year was a whirlwind of physical therapy, speech therapy, special ed. preschool, and the beginning of melatonin administered nightly (otherwise known as sleep for two very exhausted parents of an insomniac).  I was grateful for all the help, especially the therapy, as long as we were able to get it.  Still, part of me often wondered that first year if he really needed all that therapy and help.  There were some days when he didn’t seem “autistic” at all, and when he was with his peer group, he seemed to manage pretty well.  He may have been off to the side playing by himself, but it didn’t seem all that abnormal.  After all, he was THREE, I reasoned, and of course three -year-olds are going to be stubborn and crazy and a little odd sometimes.  Then, every once in a while, we would have one of those days that reminded me all too painfully that yes indeed, David was and will always be autistic.

 

Now he is six.  He is a little kid shoved into a big body.  He towers over his little brother, who is just a year younger than him.  I have seen recent glimpses that foretell that his little brother will be surpassing him in many areas soon.  His older sister is light years ahead of him both in common sense and in academics.  He is starting to realize that he is not quite sure where he fits in.

 

The thing is, for the most part, David is completely unaware of people.  He doesn’t interact with others (besides his siblings) very much and has a hard time grasping why we wouldn’t do things his way.  This behavior was completely acceptable to his classmates when he was three.  Three-year-olds could care less about proper social interactions and manners.  Now, however, the difference between him and his peers is ever widening.  Every day, I am looking for ways to help him bridge that gap or at the very least learn some methods to get by.

 

I am so used to his mannerisms and quirks that sometimes I still forget about his autism.  I know God knew exactly what He was doing when He blessed our lives with David.  And, oh, the stories we can tell of our experiences with him!  Just yesterday, we went out to dinner.  David insisted on using the restroom all by himself, but past episodes have proven that he cannot be trusted to go in alone.  So Chris went in with him.  A few minutes later, they emerged, and Chris looked as if he were going to burst in laughter at any second.  “What happened?”  I asked.  He smirked.  “Well, that was embarrassing,” he said.  “Of course, David walked right up to the urinal next a man and started talking to him and asking him wildly inappropriate questions.  And you know how he does it in that monotone voice.  He was completely serious, and I’m pretty sure that guy had no idea what to say.  When David asked him if he had ever pooped watermelon seeds, I knew it was time to get out of there!”

 

Ha!  Our little man, who really has little sense of humor, has a gift for making us laugh just when we think we’ve been stretched to our breaking point.  I can’t imagine life without him, and I certainly can’t imagine life without autism.  The journey we have traveled together so far these three years has been nothing short of miraculous, breath-taking, and amazing.  Now, when we hit teenage years, I may have a few other adjectives to describe this path we are on. . .