Truths & Fears, Hope & Love

My last blog post was an update on the things that have been going on in our lives.  It was pretty factual.
This post has a more emotional slant.  I've hesitated about whether I should write it at all, because it is so highly personal in nature and may even touch upon controversial.  I never have my husband read my posts before I publish them, but I had him preview and approve this one because of its sensitive content.

Before I get to that, first let me tell you a quick story that I meant to share in the last post, but it was too long as it was. :)

I had mentioned in that last post that we took a trip to Florida over the summer.  We had taken several plane trips with Lochlan previously so we already had parts of the routine down as to how to navigate security with all our gear.  I love to travel but traveling with a child is a very different experience and I find it really stressful.  I wish I could say I handle it well, but I just don't.  I am always so thankful when we reach our destination and I can finally relax.

Well, on this flight to Tampa, the three of us were not seated together.  Luckily, the passenger in the window seat was kind enough to switch to the row behind, and we were able to get the three seats together.  In theory, this trip should have been fairly easy.  The flight wasn't particularly long and I had prepared well by packing toys, snacks, books, crayons, and of course-our ace in the hole- an iPad.  Our main concern was to keep Lochlan quiet enough that he wouldn't disturb other people.  Or so we thought.  It turns out the real issue would be kicking.  We had brought his carseat onto the plane and from there, he began kicking the seat in front of him.  We tried to distract him.  We tried holding his legs to restrain him.  But we could not get him to stop.  I could tell the passenger in front was getting annoyed.  Finally, at one point during the flight, he turned around and asked (in a very polite British accent) "Excuse me, could you please tell him to stop kicking the seat?"

I was mortified.  I kind of froze up and didn't know what to say.  Sachin stepped in with a quick apology and told him we would keep trying.  

I can't fault this passenger at all.  He was not rude about it.  But all I could think was- Gosh, if only it were that EASY!  If only I could just solve this problem by talking to Lochlan and simply asking him to stop.  This guy has no idea that my son does not comprehend requests like that.  That he is very motor-driven and he feels the incessant need to move and have sensory input even while strapped into his seat.  And in situations like this, I always wonder whether I should include in our apology an explanation that our son has autism.  I mean, shouldn't I give this guy more information, so that he doesn't just sit there thinking I am an awful parent who stands by complacently and lets her kid kick seats?  Most people can't tell Lochlan is different from a casual glance so he probably does think I simply let my kid run wild.  I wish I didn't care what other people think.  But I do.
We run across this in restaurants sometimes as well, where I catch people staring at Lochlan and at us.  He usually does pretty well at restaurants, honestly, but he has loud moments of laughter here and there.  I see people turn to look at him and I want to say something, but I hold back.  I think it is due to fear.  Fear that if I tell people he is disabled, they will respond by saying, "Well, lady, if you can't control your kid, maybe you shouldn't be bringing him on an airplane (or out to dinner, or to the grocery store, etc)"  And what do I say then? What defense do I have?  Are they right?  But even if they are, I don't want to live a life where we are forced to stay confined at home.  We really want to be able to live as normal a life as we can, not only for our own happiness and well-being, but of course, for Lochlan too.  We want him to be exposed to typical experiences so we can practice social skills and just let him have a taste of the life that other kids get to have.  We want to approximate normalcy as best we can.
Before I had Lochlan, maybe I, too, was quick to judge parents out in public.  Maybe loud kids annoyed me or made me roll my eyes.  I really can't remember very well, but it's certainly a possibility.  I bring up this story to you because it'd be nice if we could all give parents the benefit of the doubt- if Lochlan had Down's Syndrome or severe cerebral palsy or some other physically apparent disability, it'd be obvious to the world we had a special needs child.  But I hope you take away my point that disabilities are not always obvious.  Lochlan has changed my perspective, not just about individuals with special needs, but about people in general.  Our experiences with him have made me realize that people are sometimes going through struggles that others have no idea about.  Compassion is so essential.

(By the way, we wised up on the return flight home and gate checked Lochlan's carseat-- without the added height, his legs were no longer able to reach the seat in front of him.  We had a kick-free flight home! Hooray!)

As I write this, we have less than a week left until our baby girl arrives.  The nursery is set up, baby gear is assembled, clothes are washed- but are we ready? Ha.  
I am so much more nervous this time around than I was with the first delivery.  Last time, I skipped blissfully down the golden path to new motherhood.  This time, I am stepping cautiously, resolutely placing one anxious foot in front of the other.

Because Lochlan's delivery was difficult and involved a bad case of shoulder dystocia (he was stuck, I pushed for about 3 hours, his oxygen level dropped, it was a train wreck), my doctor said that a c-section was a smart choice for this delivery.  I didn't want to attempt a regular delivery and have problems again and end up always regretting that decision- so I've chosen to do the c-section this time around.  This is laughable because I am a first-class wuss who can barely pull off a Band-Aid.  And, of course, now that the scheduled date is approaching, I am absolutely terrified.  I worry not only about the surgery itself, but also about the healing process and the pain everyone tells me about.  I can only hope I rise to the occasion and magically morph into a warrior mama when the time comes.

But I have other worries too, ones that no one likes to admit to, but I'm going to break the silence on this and share.
You know, there are a lot of differing opinions out there about expanding your family when you already have a child with special needs.  It's a very touchy subject.  Some people feel that it takes away your time and resources from your special needs child and they opt not to do it because they don't feel they can give each child what they will need.  Other people feel differently and think it's great to have give your special needs child a sibling.  Things get hairier when there is a genetic component to the special need.  In our case, there is no denying the research that shows that siblings of ASD kids have a higher rate of being on the spectrum.  I made the mistake of reading a study and it scared me.  Some ASD parents have this decision taken out of their hands because they are already pregnant with their next child by the time their ASD child is diagnosed.  They never had to make the decision with full knowledge of the risks.  I almost envy them.

We had Lochlan's diagnosis already.  But I never at any time thought we would have just one child.  We've always said we wanted more than one, so stopping there was just not an option to us.  But that doesn't make this any less scary.  If you've read my previous blog posts, you should know where I stand on autism and what my perspective is, so I hope it doesn't shock or offend any of you when I say I really hope the autism fairy skips us this time.  I am not ashamed to hope for this out loud.  And if you care about us, please hope for it too.  Does that mean we won't love her and accept her if it turns out she has ASD or some other disability? Let me be clear on that-- OF COURSE NOT!  We are awaiting her eagerly and will welcome her with open arms into our lives and hearts no matter what.
But it's fair to say that autism is not the dream we had for Lochlan, and it is not the dream we have for this little one.  We are rolling the dice with the decision to have another child (I think everyone does, really), but we look forward to the joy she will bring to our lives.  Ultimately, we really believe every child is a blessing and we are so grateful to be getting another family member to love.

At the same time, I also worry about doing right by her.  I worry about how we will divide our time, how we will make sure she doesn't grow up feeling sidelined by Lochlan's special needs, how to make sure she has the space, freedom, and opportunity to enjoy her own childhood, how we will try to foster a connection between the two of them, how to help her appreciate and accept her big brother for who he is and to find ways to love him as we do (and yes, I even worry- how am I ever going to manage flying with TWO children?! :)).  
While teaching, I had some students over the years who have special needs siblings and these children floored me with their maturity, patience, and kindness- traits I believe they developed at an early age because of having a special needs brother or sister.  I very much hope that we can raise our daughter similarly, that she will have strong character in part because of her relationship with Lochlan.

Really, friends, I have no idea what we are getting into, what is about to happen, or how our lives are about to change in a few days.  I lie in bed wide awake with all these thoughts, fears, and hopes swimming around my brain.  There's no crystal ball, no answers appear to me.  I know we will just have to wait and see and take one day at a time.  

You can see why I warned you this was a highly personal post!  :)  I am going to feel nervous hitting that "Publish" button.

I want to end by asking for your prayers- not only for a safe delivery and the health of our little girl, but also (and I hope this isn't selfish) prayers that we will have the strength, grace, and courage to meet whatever challenges we have lying ahead. 

Every blog post needs at least one picture. ;)

 

Changes

Fall is upon us and our family is about to enter another season of change.
This whole year has been full of change, actually.  As I stop to think about it, I realize how overdue this blog post is!

One big change was that we moved into a new house, one that is five minutes tops from our old house.  The reasons are hard to pinpoint.  We had a growing feeling that our old house just wasn't the right house for us anymore.  We noticed that Lochlan stimmed a lot more at home than he did anywhere else.  We kind of reached the point where we thought, if we want to move, we need to do it now or we will never get around to doing it!  

the new house

So our new home is the exact same square footage but it feels SO much larger because of the layout.  We converted the formal living room up front into a playroom for Lochlan, complete with a baby gate fence so that we have somewhere safe for him to be when we can't watch him.  (In case you didn't realize, Lochlan requires near-constant supervision!)  

Lochlan seems to like the new house well enough.  One of the common characteristics of autism is rigidity and resistance to change.  We've been pretty lucky in that respect because Lochlan goes with the flow quite a bit and usually transitions well.  However, for a few months, he had a major phobia of the fireplace in the living room.  We have no idea why.  Every time we managed to get him to the living room (no small feat in itself!), he ran past the fireplace and out of the room, whimpering worriedly, and he peered at it anxiously from any vantage point he could.  We could not get him to be in the living room with us at all.  I worked hard to desensitize him to the fireplace- I started by having him walk by it casually and having it within line of sight during mealtimes.  We moved on to playing on the iPad or watching his favorite Elmo DVD in the same room as it.  He would cooperate more or less, but always oriented himself so that he wouldn't have to face the fireplace.  It's taken awhile but I think it's safe to say his fireplace phobia is now over.  He is able to hang out with us on the living room couch and he hardly gives the fireplace a glance.  Success!

Another big change in our family is that we are expecting a baby.  As I write this, we are scheduled to meet our daughter in about two weeks.  Daughter- that is going to take some getting used to!  There is a lot to say about expanding our family but I'll save that for another post.  I have a feeling this one will be long enough as it is!

I also left my job as an elementary school teacher to stay at home with the kiddos.  To say that was a tough decision is the understatement of the year.  I agonized endlessly over what to do, but there were a lot of factors that made it the right decision.  My parents help us tremendously with Lochlan but adding another child into the mix will require so much more and I need to be there for that.  I also missed a lot of time with Lochlan when I was at work and I can see how precious these early years are.  I want to be there to watch this little one and help her to grow and to enjoy a spectacularly awesome childhood.  I also just felt like I was drowning between working full-time and trying to manage our household and muster up enough energy to care for Lochlan.  It was a constant struggle to keep my head above water, more about survival than anything else.  Although staying at home will still be a lot of work, I am hoping that by letting it be my primary focus, I can slow down the pace of life a bit and enjoy everyday moments more.

Enough about me- let's talk about Lochlan.  The summer was a busy time.  We took one vacation to Longboat Key, FL where Lochlan spent pretty much the entire vacation sick with an ear infection.  We had chosen this vacation because of his love of the beach, so it was disappointing that he was too ill to enjoy it.  We spent a lot of time in the hotel suite, where I got to know Nick Jr.'s program lineup VERY well.  We did manage to get him out to the beach and pool a bit, where he was content to sit in the shade of the beach umbrella and shift sand through his fingers.  I know some ASD kids have issues with sand, but Lochlan loves it.  It provides a positive sensory experience for him.  I'm so glad he loves the beach because I do too and it's something we can share together.

Back at home, my mom was sick with pneumonia for most of the summer so the rest of us stepped it up.  It's sometimes like between us and my parents, that Lochlan has four parents instead of two.  And that's awesome, because it kind of does take four people to raise him because, frankly, monitoring Lochlan truly requires hypervigilance and it's exhausting trying to keep up with him.  But when one of us is somehow unavailable, the rest of the team does feel the impact.  The other three have certainly been feeling it the last couple of months of this pregnancy.  I am having so much trouble moving around that I am not really able to chase after Lochlan and keep him out of trouble.  That has fallen on the others, which makes me feel an odd combination of guilty, but grateful for their support.

Lochlan spent a lot of his summer in various therapeutic interventions.  He spent 13 hours a week in ABA, 1 hour in speech, and 2 hours in occupational therapy.  16 hrs total a week in therapy and that doesn't include the travel time to ABA or speech, which are each about 30 mins away from our home.  In ABA, they continue to work on motor imitation in play skills (put the farmer in the tractor, make the plane fly, etc), matching pictures and objects, following basic directions, and vocal imitation.  He's made some gains in speech over the last few months. At 3 1/2, Lochlan is still considered nonverbal, but he is starting to echo word approximations.  For those not familiar with the lingo, it goes something like this:

Me:  Lochlan, a pig says "oink."  What does a pig say?
Lochlan: (after a few incorrect attempts) "OH-k"

Me:  Lochlan, this is a purple dinosaur.  Say "purple."
Lochlan: (after a few incorrect attempts and me taking away the dinosaur until he cooperates) "pup-pup"

You get the idea.  It started with echoing vowel and consonant sounds, which we continue to do because if Lochlan doesn't repeat sounds often enough, he forgets how to make them.  We are trying a lot harder with stringing sounds together to echo words.  There are a few he can do pretty clearly ("moo," "up," "baa") but most are approximations ("mo" for more, "ga" for green, etc)  Lochlan REALLY struggles with focus and attention so consistency is a big challenge.  Some days he can sit and do a whole string of animal sound echoes for you, other days he won't make eye contact and is completely unable to focus.  We clap and cheer and make a big fuss so that positive reinforcement will spur him on.  It's really difficult to keep Lochlan present and in the moment with you.  Sometimes he's there, and then suddenly he will get distracted with the wind blowing through the trees outside and he will start smiling and babbling, thinking about something else that makes him happy.  He has gone somewhere else and that is so quintessentially autistic.  But we try very hard to keep him present so he can continue learning.  It's a constant struggle.

Of course, these are just echo imitations that I am talking about.  We would love for him to start using speech in a functional way for communication purposes, like saying the "k" sound for "cup" when he is thirsty.  So far, he does not generate any speech on his own, only in imitation, but we are hopeful that he might do so down the road.  I dream of a day when he can communicate his wants/needs to us.  Right now, we have to hover around him and basically have become very adept at mind-reading skills.

A few weeks ago, Lochlan started a new schedule- ABA in the mornings and PPCD (preschool for children with disabilities) in an area public school in the afternoons.  Long days for a 3 year old!  He qualified for PPCD as a student with autism and significant speech impairment.  It was emotionally draining to fill out endless paperwork about all the things he can't do, to keep filling in "No" or "N/A" on almost every question.  It's a very defeating feeling.  It's also pretty tough to read the evaluation report and see the scores he was given on the different rating scales.  We get so used to his skill levels that is a little shocking to get an objective reminder of where his abilities are compared to typical same-age peers.  It is very sobering, to say the least.

So far, he is doing ok with PPCD.  His teacher says he doesn't like to wear his backpack or carry his lunchbag, but that he is slowly improving on these things.  He's not so great at eating his lunch and I worry that my skinny boy will lose weight, but hopefully he will improve his self-feeding skills out of sheer necessity.  Lochlan cannot use utensils independently so I am sending him with finger foods (cut up grilled cheese bites, cut up grapes, Baked Lays, etc)  I worry a lot about him everyday but I know that it is good for him to get out of the house and have new experiences and practice skills in a different setting.  I know a lot of moms cry when their child goes off to kindergarten.  Imagine how hard it is to send your nonverbal three-year-old out to school.  There's no real way of knowing how he is doing.  I am trying to trust that this is the right move and will help him progress.  

A few more random tidbits about Lochlan's world:
-He loves looking at pictures of elephants.  He has one book where he'd be content to sit and tap the elephant picture all day if I let him.  Sweet Lochlan.  Some of his quirks make me smile.

Actually, Lochlan has a favorite page in every book we read.  That intense focus is another hallmark of ASD kids.  In "Brown Bear," it is the page with the purple cat.  Boy, he loves that purple cat.

-He is obsessed with strollers and carts.  He loves riding in his stroller and has a fit if we try to take him out of his stroller at the mall, etc.  

If you try to take him to a store that has carts, you better be prepared to put him in one, or you will have just bought yourself a front row ticket to a meltdown!  Although Lochlan is a pretty mellow kid, he gets very upset if he sees shopping carts and doesn't get to ride one.   It's been tough during this pregnancy because he's getting to be a big kid and for awhile now, I haven't been able to safely lift him into the shopping cart seat-- which means I haven't been able to take him out to any stores with me by myself.

 
-If you leave an iPhone anywhere in his sight, he will swipe it and make off with it, giving you a mischievous smile as he searches for a place to enjoy his stolen treasure.

- My mom says he loves watching The Price is Right, at least the part where they spin that wheel.  She says he goes running to the TV to watch the wheel up close, mesmerized by the spinning and the sounds.

-Lochlan has developed a love of crayons.  It makes going out to dinner easier with him because he is pretty happy to scribble with crayons on the kids menu for a long time.  However, separating him from the crayons at the end of the meal is a noisy affair.  Our strategy is a quick exit.
In general, I've been trying to do more art projects with him.  Here's one we did from September.  He did a pretty good job of staying in the right area when coloring and he is very intrigued by foam stickers.

 

-Lochlan's happiest place is a playground swing.   

-He's become VERY stimmy over the last few months.  He opens and shuts cabinet doors, jumps up and down, bounces on furniture, claps his hands, plays with all the buttons on the refrigerator, etc.  We're always working on ways to give him sensory experiences to address those needs.  He's what they call a sensory seeker.

Lochlan has been playing with light switches for a long time now.  It drives us crazy.  But recently, I saw something kind of exciting.  He had walked up to his baby sister's nursery to take the "Brown Bear" book from her shelf.  The room was getting dark since the sun was setting.  I saw Lochlan go over to the light switch to flip on the light, and then he went back to the book.  !  No stimming, just turning it on once.  !  I sat up straight and took notice- he had just noticed a problem (dark room) and used initiative to solve it (turning on the light).  Now, this is not a big deal at all for a neurotypical 3 yr old, but one thing autism has taught me is that we need to celebrate every milestone and achievement Lochlan makes, even if it comes way later than expected.  
And it wasn't a fluke, he's been turning on light switches in dark rooms since then.  A breakthrough!  Those switches aren't just a fun toy to stim with- they actually serve a purpose!

Ok, this is the longest blog post ever so I should probably end it here.  If you actually read this far, thanks so much for your interest in our life with Lochlan!  Stay tuned for another post about Baby #2 coming soon.