San Antonio

The fall flew by fast!  In October, we made the difficult decision to pull Lochlan out of his church preschool classroom so that he can attend his ABA program 12-14 hours each week.  I'm really sad because we really love this church preschool but I know that Lochlan wasn't really able to participate the way that other children in his class could.  Left to his own devices, he was opening and shutting cabinet doors in the classroom and refused to sit for circle time.  There were also reports of him pinching other students and trying to bite his teachers.  Clearly, he was getting frustrated and was not able to communicate as he should.  

None of that is surprising, given the results of his recent speech evaluation.  His speech eval indicates that his receptive language skills are equivalent to about a 15-18 month old and his expressive language skills are somewhat equivalent to a 9-12 month old. 

Lochlan is two and a half years old.

I could go in depth and tell you how this makes me feel but I will save that for another post.  For now, suffice to say, we are hoping ABA helps him.  Since starting ABA over the summer, we have seen at least some increase in his ability to concentrate and focus and some increase in his imitation skills.  This is key because all of those are necessary prerequisites to natural, social learning.

And life marches on.

In November, we took a family trip down to San Antonio.  My parents joined us, as well as my brother from New York.  We drove down and stayed in a rental house that was spacious enough for Lochlan to stretch his legs.

The house had an awesome backyard with a heated pool.  Sadly, we were unable to enjoy those features because it was an absurdly cold stretch of days in Texas, with temperatures in the 30s and 40s and so.so.windy!!

Nevertheless, we did what all first time visitors to San Antonio must do and visited the Alamo.  With our noses running and our hair whipping about in the relentless wind.  We bundled up Lochlan as much as we could but he could still barely tolerate it.

While in San Antonio, we also visited the San Antonio Children's Museum.  I am a serious children's museum junkie.  They are such fun places and it's great to have something to do on a vacation that is specifically geared towards Lochlan.  I like taking him to children's museums because even if he can't participate in all the activities for kids his age, we are always able to find at least something in them that he is able to enjoy and that is at his speed.

The San Antonio Children's Museum was a decent place to spend an afternoon.  We stopped at the tots area for children under 3.  Lochlan played with some cool light pegs and was interested in some bubbles.

I also checked out his height against David Robinson.  How is anyone that tall??

There was a cute farm area where Lochlan got friendly with this plastic cow.

But the real highlight was the kid-size HEB grocery store.  There were two things that made me excited about Lochlan's activity in this area:

1.  He wanted one of the little grocery carts and actually pushed it around a little bit by himself.  I have never seen him push a cart before so this was huge to me!!

2.  He actually took some cans off the shelf on his own and when we said, "Put it in!" he did put them in the cart by himself.  He even dropped a can by accident, noticed that he dropped it, and then stooped to pick it up and put it in the cart with the others.  Earlier this year, he would not have had enough focus to complete that simple act.

He only played with the cart and cans for 3 minutes at most, but to see him engage in any kind of age-appropriate, "normal" play was tremendously exciting for me and Sachin.  To parents with typical children, what he did doesn't sound like anything to write home about, but for us, it really was!  We are keenly aware of every small accomplishment he makes and we let that satisfaction resonate deeply within us. 
There are so many uncertainties facing us but I will gladly stop to revel in these ever so tiny marks of progress.

The A Word

Did you know that autism affects 1 in 88 children? And, when you break it down by gender, 1 in 54 boys?  

We officially became part of that stat this week.

We had another appointment at the Fort Worth Child Study Center where we received the results of Lochlan's autism evaluation that was done in August.  The psychologist's report indicated that Lochlan's assessment results were consistent with moderate to severe autism, though our developmental pediatrician at Child Study said she feels he is more on the moderate end of that range.

But there you have it.  Even though we had kind of known this already, we now have an official diagnosis.  And it was still a very sobering thing to hear.

Does it change anything? Not really, I guess.  We are still continuing with his ABA program and are considering taking him out of preschool in order to increase his ABA time.  That's a tough call but it seems that he is not really participating well in preschool and is perhaps not getting as much benefit of being in a "normal" setting as we had hoped.  I don't know yet what we will do but I just want to keep seeing Lochlan progress.

Dixie Cups

Tonight I am in tears over Dixie cups.

But let me backtrack..

I am wrapping up my first week back at work teaching third grade.  It's been hectic and in the midst of all the craziness, we had Lochlan's Meet the Teacher night at his church preschool this evening.

When I sat down the other night to fill out a child information form in preparation for Meet the Teacher Night, the sadness set in.  The form had typical questions like: What does your child like to play with indoors? Outdoors? Does he nap? Does he sleep through the night? etc etc.  
The questions about playing were hard for me.  In truth, Lochlan doesn't really know HOW to play with very many things.  He has to be taught how to play, along with pretty much every other skill that other two-year-olds naturally acquire.  
Lochlan started an ABA (applied behavior analysis) program this summer where he does 6 hours a week one-on-one with a board certified behavior analyst (BCBA).  My husband's insurance doesn't cover ABA at all so I am waiting for my school insurance to kick in at some point to cover at least part of the cost.  I don't even want to tell you how much we are paying each week out of pocket right now.  It is sickening.  HOWEVER, so far, I feel it is well worth the money.  Our BCBA, Ms. A, (I'll call her that for privacy) is wonderful and I have seen some progress already in Lochlan's ability to focus and his imitation skills.  Eventually, we will try to get him going for the recommended 20 hours a week but for now, M-W-F for 2 hours each session is all he can manage.  I took him while I could during the summer, and now it is my parents who will be taking him three times a week.  The other two days a week, he will be going to his church preschool.  We hope that exposure to other children and participation in the fun activities there will be beneficial to his development and give him an opportunity to practice his skills.

Well, back to the school form.  Lochlan doesn't know how to play with much and we continually work on teaching him to play with things like blocks and stacking pegs.  He has some interest in puzzles but most of the time, left to his own devices, he will find a door on a dollhouse in a playroom and open/shut the door until someone diverts his attention.  As for outside play, if I was being honest, I would have written that his favorite outdoor activity is chasing his shadow and laughing at it.  Sigh.  Instead, I wrote slides and splashpads, because he does like those too..Does he sleep through the night? Yeah, most nights.. Except for those random nights when he wakes up screaming uncontrollably for no apparent reason and it takes both me and Sachin working in conjunction over the course of 40 minutes to make him stop.  (How? Usually a combination of Sachin restraining his kicking/flailing while I blearily sing a cover of Leonard Cohen's "Hallelujah" that he really likes.  That's how we roll at 3 am in KamathLand).

I decided to write a separate attachment for his school form so that his teachers in the 2 yr old room are fully aware of his special needs and the assistance he may require.  Writing that attachment was really painful.  Actually, it is hard for me to find words to tell you how extraordinarily painful it was.  Writing down in detail all the ways my little guy departs from the norm HURTS.  Acknowledging his poor motor coordination, his propensity to eat paint, his inconsistent napping, his complete lack of conventional speech, etc etc really made my heart HURT.

Did I write down positives about him? Of course.  I wrote about how they will find him to be a peaceful, easy-going little boy.  I wrote about his how joyful shrieks and delighted smiles are heartwarming when he is happy.  I wrote about his love of music and how it is a great way to get him interacting and attending.

But my heart still ached.  Tonight, we met his teachers at the school.  They seem very friendly and kind.  But the packet of information I brought home from Meet the Teacher night let loose another wave of heartache and concern.  One of the items on the papers mentioned that we don't need to send sippy cups because they will have the kids drink out of Dixie cups.

Dixie cups? Lochlan has ZERO ability to do that right now.  He doesn't know how to hold a cup, even a small one like that.  He would only squish it or tip it over.  And even if he managed to pick it up, he wouldn't understand how to sip water without spilling it all over himself.  
I know that if I let his teachers know this, they will say it's fine to stick with his straw cups for now.  But that's not the point.  The point is that I feel that he is at an age where he should be learning these skills.  And I don't even know how to really teach them to him.  Yes, we will start by buying some Dixie cups and working on getting him to hold them.  But I am anxious.  And don't even get me started on the potty training handout they provided!

I truly have the anxiety of a special needs parent now.  I LOVE my son and we see great qualities in him.  But I worry so much that others will only see his deficiencies, his differences, and view him as a burden.  I worry that others will be impatient and frustrated when he doesn't look at them, doesn't come when they line up, doesn't carry his backpack to his cubby, etc.  I pray that his teachers this year (and in the future) are able to love him and that they are patient with him.  

I once read a quote for teachers that said, "Every child in your class is someone's whole world."  How incredibly true and how worth remembering.  As a teacher myself, I know it's easy to lose sight of that sometimes, but as Lochlan's mommy, I can tell you that he is my world and I want him to always have teachers that are gentle and loving and appreciative of him.  I urge all my teacher friends, now as we are starting a new school year, let's remember this quote and particularly for our special needs kids, our quirky kids, our "odd ducks," let's be compassionate and understanding when their parents seem overly anxious (because hey, I AM that parent now) and let's open our hearts to those kiddos.  Not see them as an obligation, a test score, whatever.  Let's remember to see them as someone's whole world.

Wish me luck on the Dixie cups, friends.