Fun at the Splashpad

Summer is well underway and that dreaded Texas heat is starting to kick in.  I have to start planning better so I can avoid midday trips to the grocery store.  Getting into a sweltering car is mighty uncomfortable for me, but I hate subjecting Lochlan to that experience.  His car seat seems to make things even hotter for him and he has no language skills to tell me that he's unhappy.  Poor guy.

We recently discovered a little gem of a park in Arlington, less than a ten minute drive from our house.  Misenhimer Park is just off of Matlock Rd and it is fabulous.  It has a nice playground with swings, slides, and plenty of places to climb, a cool sandbox (bring toys!), and best of all, a free splashpad (or as they call it, a sprayground).

I looooove the splashpad.  Splashpads in general are pretty cool.  The germophobe in me likes them because they seem more hygienic than having your kid playing submerged in pool water with strangers.  The kid in me just thinks they look really fun. Why didn't we have these when I was growing up in New York?

Anyway, the splashpad at Misenhimer is super cute and thoughtfully designed.  It has an umbrella tree that cascades water, several sprays that spurt water from the ground, a spraying turtle that kids can climb on, and a dolphin whose back basically is a water slide for little kiddos.  There is plenty of shaded seating for parents to sit nearby and watch their children.  And a bonus- there is usually an ice cream truck in the parking lot!  

Lochlan could spend hours and hours at this place.  He is obsessed with water, fountains, sprinklers, etc and he doesn't seem to mind when the water hits him in the eyes.  He usually sticks his tongue out when he plays (I'm hoping the water is clean enough).  When we take him there, he doesn't interact with the other children but he manages to avoid getting knocked over.  When he gets very excited, his motor skills take a hit, but he has been keeping his balance pretty well and though he runs awkwardly at the splashpad, I've never seen him fall! 

Note- there are no restrooms at this park, just Porta Potties.  Hopefully, they will build restrooms in the future and then this park will have it all!

Here are some pictures.  (Not my best work, but I was trying to keep me and my camera dry!) :)

And an update on my last post- I finally got hold of someone at the Child Study Center and we scheduled our Psychology evaluation for early August.  Yay!!

 

Fed Up

I had intended my next post to be about some of the activities we have been doing with Lochlan in the last few weeks but I will have to save that for another post because right now, I am in the mood to rant.

So when we visited the Child Study Center in early June, our developmental pediatrician referred us to their Psychology Dept for a full autism diagnostic test (called the ADOS).  The doctor said that Psychology would call us to schedule the testing but that if we don't hear in 3-5 days, we should call her office back to schedule the testing.  [weird statement- basically saying the ball is in their court but acknowledging that they will probably drop the ball and it will be my move anyway?]

Ok.  So a full week later, I tried calling her office.  No answer, a message service picks up.  
I try again that same day, later in the afternoon, no answer.  Same message service on the nurse's line.  
I try again the next day.  No answer.  
The third day, I left a message.  Their message service recording says someone will call you back within 48 hours.  
No one ever called me back.  

My frustration has been mounting and mounting.  I want to get an appointment in with these people for his testing because who knows how long the wait list is.  We had to wait almost 5 months just to see the developmental pediatrician! (But maybe we are lucky.  I've read that in other parts of the country, people have to wait a whole year to see a developmental pediatrician.  Why aren't more people going into this specialty??  With the rate of autism rising to epidemic levels, you would think there should be more medical personnel available to serve these populations..)

Anyway, a few days ago, I found a different office number for Child Study and tried that.  No answer.
I decided to bypass her office since apparently no one ever answers the phone for patients.  Just now, I went to the Child Study website to find the number for the Psychology department.  Finally, I got someone on the phone.  I explained that I was trying to schedule the testing.  But get this, the person I spoke to told me that the lady who does all the scheduling for Psychology has gone home for the day.  (AT 3:00 ON A MONDAY).  Would I like to leave her a message?
Yes, yes I did leave a message.  I politely explained what my purpose of calling was and asked her to call me back tomorrow

Keep your fingers crossed that I make contact with the right person.

But honestly, it shouldn't be this hard to schedule testing for your kid.  Parenting a special needs kid is hard enough without having to jump through hoops.  I think this whole experience has been absolutely ridiculous.   Why is it ok for a whole department to never answer their phone or return messages or for employees to keep random hours?  

Sorry for the long vent.  I had a grueling art class with Lochlan this morning.  He ate paint.  I'll save that for another post.

Meet Lochlan

Meet Lochlan

Yes, I know that picture is taken from far away.  Don't worry. You'll get a better look at him later.  For now, just take my word that he is a cutie pie.

Lochlan was born April 30, 2011.  He is currently 2 years old.  How should I describe him to you?  He is sweet, good-natured, happy-go-lucky, and pretty laid back most of the time.  He has a stubborn streak (but what two year old doesn't?)  Lochlan loves music and singing, splashpads/sprinklers, reading books with his mommy, and messing around with bristle blocks.  He enjoys trips to playgrounds and going down slides and loves bouncing on beds and getting buried under pillows.  He is an only child right now and as such, receives a ridiculous amount of love and undivided attention from his adoring parents and grandparents.

As I said, Lochlan is two.  In the two short years he's been with us so far, Lochlan has been to:
his pediatrician, 
a pediatric gastroenterologist,
a pediatric ophthalmologist (and has had corrective eye surgery at the age of 13 months),
an audiologist,
a pediatric neurologist,
a geneticist, 
an orthotics specialist, 
and this past week, he saw a developmental pediatrician for the first time.  
In addition, Lochlan has worked with a variety of physical therapists, occupational therapists, and speech therapists.

We're not playing around people.

Do you feel exhausted yet?  Welcome to my world.

His Story
Got some time? Get ready because this is a long story.  I promise my future posts will not be this long!  But to appreciate where we are with Lochlan today, you need to start at the beginning and if I am going to tell his story, I need to tell it right.

My pregnancy with Lochlan was pretty normal.  There is really nothing very exciting to note about it.  For most of it, I was pretty joyful.  I wore my maternity clothes happily and marveled that my sluggish metabolism had kicked itself into some unrecognizable gear where I actually had trouble gaining weight!  I researched baby items endlessly on Amazon and read a half dozen baby books.  I've always wanted to have a little boy and I had a hunch that was what I was carrying, so I was thrilled to get confirmation of that at our ultrasound.  We decorated a nursery which we painted and repainted about 14 times (did you know that it's REALLY hard to find a paint that is truly beige?)  I bought a zillion onesies that I folded neatly away into his dresser drawers.  We took a birthing class at the hospital where I quickly determined that I would be signing for an epidural the first chance I got.  
My due date was supposed to be May 6, but by early April, I was SO ready to deliver.  When my water broke on April 29, I had a flood of emotions- shock that this was actually happening, fear of the pain I had obsessed over in my head for nine months, and excitement that our lives were about to change.  

We got to the hospital at about 6 pm on April 29 and my contractions started around 7 pm.  I made it through about three hours of labor before requesting an epidural.  When that back labor kicked in, I knew enough was enough.  It took the anesthesiologist an hour to get to me though.  Fun times.  (On a side note- for anyone who worries about whether getting an epidural will hurt, I can say that for me, I did not feel it whatsoever.  You are so focused on getting through those contractions!) Anyway, the epidural was amazing and awesome and spectacular.  I laid back, enjoyed a popsicle, and felt happy and calm.  The nurses told me to get some sleep, but I was too excited.  With the pain of contractions behind me, I was pumped to start pushing and meet my baby boy. I watched a Zumba infomercial to pass the time while my mom and Sachin made some attempt at sleep.

Around 3:45 am, the nurses said I was fully dilated and ready to push.  I pushed. And pushed. And pushed.  I pushed for almost 3 hours.  I was really starting to lose it after awhile.  I had been up about 24 hours straight and was really hungry and just wiped out.  The doctor told me that the baby's heart rate was dropping and they put an oxygen mask on me.  She said he was stuck.  They used a vacuum to try to get him out but it didn't work.  The tension in the room was rising by the minute.  All the cheerful chatter among the nurses had ceased.  Finally, at 6:42 am on April 30th, Lochlan entered the world, screaming just like any other newbie. 6 lbs 6 oz and as feisty as could be.  I was so relieved.  The birthing experience had been very traumatic.  (To this day, I still wonder if things would have all turned out differently if I had a C-section that morning. I try not to dwell on this, but in my worst moments, I let myself imagine how all the outcomes might have been different).

Lochlan was in good shape, although I went into mild shock from exhaustion and the amount of blood I was losing.  A little while later, we were wheeled into another room to begin our life as a family.

Lochlan did not latch during our time in the hospital.  He screamed bloody murder any time I tried to help him.  A breastfeeding coach came to assist before we went home but it took her an hour to get him latched and even then, he wasn't really nursing.  After she left, I told Sachin there was no way we'd be able to wrestle with him like that for an hour, eight times a day.  Formula feeding it will be, we decided.  I was formula fed as an infant and I am more or less ok (ha! no comments please), so it was no biggie to me.

The First Few Months
Life at home with Lochlan was an adjustment.  A big adjustment.  One long sleep deprived blur, to be honest.  But we had expected that.  Well, expecting it is one thing, but living it is another!  My body had taken quite a beating during that prolonged delivery and of course, my hormones were a postpartum mess.  Lochlan was jaundiced initally and had a few repeat trips to his pediatrician, but it resolved itself in that first week.  
By week two or three, he was still sleeping terribly.  He would take a long time to be rocked to sleep and would only sleep 15 minutes in his pack-n-play before waking up and screaming again.  We had a lot of help from my mom and all took turns in a nightly shift schedule, but Sachin and I were starting to lose our minds.  Fortunately, I found the Fisher Price Newborn Rock 'N Play Sleeper.  This product was a godsend!!!  (Thank you again, Amazon customer reviews!)  We rushed out to get one and Lochlan slept 4 hours at a stretch his very first night in it.  The incline seemed to really help him.  We also invested in some sleepwear called a Woombie (weird name, weird looking product) that also worked wonders for his sleep.

Fast forward a month or two, and Lochlan started spitting up.  A LOT.  Like after every feeding, we'd have to hold him upright for 45 minutes.  He spit up 15-20 times a day and soaked bib after bib.  His doctor said he had some weak muscles in his stomach valve that are supposed to keep liquid down and that the stomach muscles would develop more over time.  She also prescribed medication for reflux (though it didn't seem to improve his condition) and we visited a pediatric GI doctor.  We had to switch Lochlan to expensive formula, Similac Alimentum, that had a wretched dog food smell to it.  Just the memory makes me gag.  

Then the colic kicked in.  I had read about colic in my baby books but boy, nothing really prepares you to hear your child scream inconsolably for hours at a time.  His crying fits would start around 5 pm every day (at which point, I would frantically call Sachin and tell him to hurry home for backup support!) and last until about 9 pm.  I don't remember much about those months beyond the spit up, the crying, and trying to squeeze in naps and showers as often as I could.  I think I watched a lot of TV as I held him upright after feedings- I revisited the best years of 90210 on my DVR and tried to remind myself that one day, Lochlan and I would play and laugh together.

June 2011

July 2011

August 2011

When Things Took a Turn
When Lochlan was about four or five months old, our doctor expressed concerns that he wasn't meeting some initial milestones, like tracking objects with his eyes, reaching for toys, or rolling over.  She referred us to a pediatric ophthalmologist who examined Lochlan and said his eyes looked pretty good and we'd have to watch and wait.  I was not worried about any of this.  I know that some parents are super concerned about milestones, but I was determined to avoid falling victim to a hyperparenting mentality.  I have always been a Type A person, but I was really going to be super cool and laid back about being a mom.  That was my plan anyway.  So I kind of rolled my eyes at these concerns and thought, he will do these things when he is ready.

In the meantime, Lochlan was getting to be more fun.  He was smiling, kicking, and interacting more.  The spitting up was slowing down.  Thickening his Alimentum formula with rice cereal seemed to help keep it down a little better.  We took Lochlan on his first plane ride in October to Tennessee for a trip to the Smoky Mountains area.  

Sometime that fall, Lochlan started rolling over and we were glad to see it.  But by late fall, our pediatrician was concerned that he wasn't making progress toward sitting up.  She recommended we contact Early Childhood Intervention (ECI) to get him in physical therapy.  I scoffed at this and later told my husband that she referred us for the slightest little thing.  She was too overly cautious in my book.  
We worked with Lochlan on his sitting skills and by the New Year's Eve 2011, he was sitting up on his own.  He was 8 months old and not that far behind his peers.

By early February 2012, Lochlan's eyes were starting to look noticeably bad.  Both eyes started wandering outward.  Our doctor told us this condition is called strabismus.  Lochlan went to his ophthalmologist who recommended surgery, but suggested we first try patching his eyes for several hours a day to see if that would fix the problem.  We dutifully patched alternate eyes for the next few months. It made no difference.

 

Our doctor also referred us to a neurologist.  This was really a turning point for us.  I had wondered why on earth she was sending us to a neurologist and started researching online. (By now, I have a PhD in Google Research (I admit, I stole that phrase from Jenny McCarthy)).  What I found concerned me.  Lochlan's delayed milestones and eye problems sounded a lot like cerebral palsy.

The neurologist examined Lochlan and noted he had muscle tone issues in his hamstrings and that the left side of his body was weaker than the right.  Based on his observations, he speculated that Lochlan may have had a stroke either in utero or at some later time.  He recommended we start therapy for him right away.  When asked if he thought Lochlan would walk and talk, he said that yes, he thought he would walk but it would take awhile and that the damage in his brain could affect speech.  He also recommended we do an MRI to see what was going on.
We became very distraught after this neurology appointment.  I remember going out to dinner one night with Sachin and sitting there sobbing through the whole meal.  We couldn't believe our beautiful little boy was going to have problems.  We were so worried he would never walk.  I told Sachin that I would gladly give up my own ability to walk if it meant Lochlan would be able to.
We contacted ECI to get an evaluation done.  Lochlan was found to be lagging in several developmental areas and began receiving physical therapy and speech therapy.  He will continue receiving services from ECI until he turns three, at which point the public school system will be his provider for special services.  We also began paying for private PT and OT on our own.  Evaluations were stressful and depressing.  We were so excited that he was sitting and thought he would start crawling soon but our hopes got dashed on that.  Apparently, even though he was sitting, Lochlan lacked a lot of core stability.  It would be many months before he started crawling.  (He finally did start to crawl at 11.5 months.)

Lochlan's 1st birthday approached.  We did a cake and presents for him but didn't have a birthday party.  Our spirits were low and we just didn't feel up to being festive.

  A few weeks later, in May, Lochlan had bilateral eye surgery to correct his strabismus.  He handled it like a champ and we were amazed that he was up and playing just a few hours after coming out of his anesthesia.  This is one resilient kid.  The surgery worked well and we hope he won't need a repeat surgery in the future.  

Summer came and I enrolled Lochlan in a daycare for a few days a week so that he could get some exposure to other children.  It started off promisingly well but went downhill.  Even though Lochlan was 15 months old, he was not eligible to go to the One Year Old room because he was not walking.  He remained in the Infant room which was so terribly depressing.  He crawled around unattended and had only soft infant toys to play with, nothing that was cognitively appropriate.  I had to supply baby food because he did not have enough teeth and motor ability yet to eat the food provided at the daycare.  (Tuna melts and burritos in the Infant room? Are you kidding me?)  He was not able to hold his own bottle of milk and was dependent on them to help him drink.  Many times his bottles came home almost completely full.  Lochlan was  not able to nap there and I had to pick him up every day at 2.  He usually fell asleep in the car on the way home.  
I grew increasingly discontent with the daycare.  One day I came in to pick him up and he wasn't wearing any pants.  When I asked the worker where his pants were, she had no idea.  I finally found them in the corner of the room.  They were not soiled.  So why were they off? No one knew.  I was upset because they kept that room super air-conditioned.  My little boy was freezing his bottom off with no pants!  Another time, when I came to pick him up, I saw him eating pieces of crackers off the floor.  The "teacher" put his food on the floor like he was a dog.  Why do that when there are high chairs right there?  LAZINESS.  

Thankfully, as summer was ending, I heard from a friend about a program at a church preschool in our town.  It was only two days a week but they had an opening for the fall and I jumped on it.  It was a BLESSING.  There were only three other students in his 12-17 month old class so with a teacher-student ratio of 1:4, he got a lot of attention.  His teacher this past year was awesome.  I appreciated how cheerful and enthusiastic she is.  They did crafts, music time, played outside, read books, etc.  The only downside is that Lochlan still isn't able to decompress and nap outside the home so we still have to pick him up early and take him home for his nap.  Nonetheless, I have been absolutely thrilled with their program and he is going back for the two-year old class this fall.  He spends the rest of his days with my parents, a gift that we could never thank them enough for.

Lochlan started walking at 16.5 months and we were all overjoyed.  A new world opened up to him once he was mobile.  It was great to see him exploring his surroundings.  After a few months, his physical therapists strongly recommended he start wearing an orthotic ankle brace because his ankles were pronating.  They believed it would help stabilize him as he walks.  So we got him fitted and he wears ankles braces most of the time.  They are tight and make his feet sweaty but Lochlan is so patient with us when we put them on and he never resists.  What an amazing kid.

So Lochlan has had a lot differing diagnoses floating around.  He had another appointment with his neurologist in February.  The doctor noted that Lochlan had made a lot of progress, but that he still demonstrated what could be termed "mild cerebral palsy."  Lochlan's ECI therapists believe he has "motor planning problems" and "sensory issues."  Lochlan's private speech therapist feels that he may have "childhood apraxia of speech"  (a neurological condition where the brain's message to the muscles of the mouth basically get scrambled so the mouth can't make the sounds the brain is telling it too)

Though Lochlan has made a lot of gross motor gains, his speech and fine motor are still lagging.  It took him a long time to hold his straw cups and we are currently working on using spoons/forks, holding writing instruments, and using one finger in isolation to point.  Speech is our biggest area of concern.  By the age of two, children are supposed to have a minimum of 50 words in their vocabulary.  Lochlan is 25 months and has no words.  Not hi, not Daddy, not Mommy, nothing.  He will pant like a dog if you say the word "dog."  He makes some approximation of a hiss if you say the word "snake."  But no real words.  He has learned to do a few sign language signs ("more," "all done," "open," and "book")  His receptive language skills are delayed as well.  Additionally, we have been concerned over the last year about his lack of imitation and communication skills.  Lochlan does not wave, play finger games, or point at things he wants or is interested in.  A few months ago, he finally learned to clap.  He does not play appropriately with toys, like cars or little people.  Lochlan is obsessed with opening and shutting doors and drawers and he gets very distracted by his shadow and his reflection.

 I could tell you more stories of pivotal moments- a disastrous Easter egg hunt at his preschool, his poor behavior at his 2nd birthday party- but let's fast forward to his most recent medical appointment. We had been on the waiting list for the Child Study Center in Fort Worth since January.  We finally got notice that our appointment with a developmental pediatrician would be the first week of June. 
 At our Child Study appointment last week, the doctor asked us a lot of questions about Lochlan's history, gave us an autism screener, and observed Lochlan herself.  At the conclusion of this, she said she has a strong suspicion that Lochlan is on the autistic spectrum and she also diagnosed him with mixed expressive-receptive language disorder and dyspraxia (motor coordination problems).  She is ordering a full autism diagnostic test for him to be performed by a psychologist.  Hopefully, they will get to us this summer.  But she indicated that she doesn't feel the results of that test will contradict her beliefs that he is on the spectrum.  
We always thought he would not be classified as a spectrum kid because he is fairly sociable, makes good eye contact with us, smiles, and does do interactive play with us. (He loves a version of hide and sneak that we play!)  But not all kids on the spectrum show the same signs, I guess.  She seemed to think that his very poor play skills and tendency to do repetitive motions indicate an autism diagnosis.  
CP (however mild), autism spectrum, apraxia-- could a child really have all of these issues?

Where does all this leave us?

There is a lot of pain in our hearts, obviously.  We have good days and bad days.  Good days are full of sunshine and optimism.  Bad days are crushing and make me want to hide in bed under my blanket.  
When you have a child, you can't help but have expectations for them and visions of the future.  All that certainty has been erased for us.  We have been putting money in a college savings fund for Lochlan (but are sad when doubts creep in about whether he will go to college one day)  Our dreams for Lochlan have gone back to basics.  Talking is a big one for us.  There are days I cry because I wonder if I will ever hear my son call me "Mommy."  I tell Lochlan that if he starts to talk, I promise I will never tell him to be quiet.  I sing to him often at night and sometimes whisper to him about all the fun things we will do one day and all the places we will visit.  I still cling to my dreams for him.  I hope he exceeds everyone's expectations, including our own, and that one day, I will be able to look back on these dark times and feel like they are behind us.  I pray that happens.  

So Lochlan has differences.  He has special needs though we aren't 100% sure what those needs are and how they will impact him in the long run.  We keep working with him and hoping for the best and take stock of how far he has come.  

Lochlan is one of the best people I have ever known.  His eyes sparkle with his wonderful spirit and his smile is infectious.  We love him more than words can say.  I know I am going to have struggles ahead but I hope that I can rise to be the best mommy to him that I can.  

Said Christopher Robin to Winnie the Pooh, "There is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think."

Team Lochlan

{Gulp}  I have thought about sitting down to write this first post many times but actually doing it is another matter. 
Does the world need another blog?  Probably not.  So why I am here?  What do I hope to accomplish with this blog?

I've struggled with these questions for awhile.  Primarily, it is self-serving.  I am hoping it will be therapeutic for me to share our journey with Lochlan.  I want to be able to tell others about him without the responsibility of having it be a two-way conversation.  Two-way conversations about Lochlan are hard for me because the listener tries to say something comforting to make me feel better and I then feel like I need to be upbeat and cheerful so that they will feel like they are saying the appropriate things and doing a good job and the whole song and dance is too much sometimes.  Here, on this blog, I am going to tell it the way I want to.  I don't yet know what my tone will be- it might raw and confessional sometimes, it may be joyful and celebratory other times, but above all- I can assure you it will be honest.  Anyone who knows me knows that I am a pretty direct person.  At least 92% of the time.

So we've established that I am here to tell about Lochlan in a truthful way.  I expect to share some of our struggles, but hopefully also points of progress that Lochlan makes as he continues to grow. I also plan to throw in some of our activities and adventures- all the little normal everyday stuff that we try to do to enrich his life and get him to engage with the world.  Oh, and pictures!  (You know I have a camera within four feet of me most of the time, right?)

I am not a mom superhero by any stretch of the imagination.  I doubt I will inspire anyone out there but I am thankful to anyone who reads our story and follows along.  To you I say: Welcome to Team Lochlan.  They say it takes a village to raise a child.  I figure that by putting Lochlan's story out in the universe, maybe we can garner more positive energy and loving thoughts from our community.  And all that positivity and good intent flowing his way can only be a good thing.

In my next post, I am going to introduce you to Lochlan.  He deserves an introductory post all to himself.