Waiting and Acting

And so another year has gone by, and it won't be long before we say goodbye to 2017 and hello to 2018.

I won't lie.  The last few years have been quite the roller coaster.  Starting with the lows of diagnosis, whether it was SPD or ASD, to the middles of therapy sessions and appointments here and there, to the highs of seeing progress with R in terms of speech, behavior, and schooling.  It's quite taxing for me as the parent, and I'm sure my husband and even R himself finds this exhausting.

And in the spirit of honesty, I will readily admit that this is not the family life I had envisioned for myself.  But God, in His infinite wisdom, knows what's best.  Romans 8:28 has always been of great comfort to me, more so now than ever before.

I suppose that I have learned - and of course still learning - a lot about parenting, child-rearing, and even about myself through this journey.  And with learning comes time for reflection. No better time to reflect on the past 12 months (or maybe even further) than at the moment nearing the end of the year.

I was planning to post tips on how to deal with the holidays with a child on the spectrum, as well as having sensory issues come to play, but as I continued to think on it, I realized there was one thing I wanted to discuss more than that.

Let's dive right in!

Building a Support System for your ASD Child

In the weeks since R's diagnosis, it's been appointments and assessments here and there.

It's also time for my husband and I to process what's happening.  I can't speak for him, but this time was beneficial for me as I got around accepting the diagnosis as it was.  Reading the books I've recently reviewed also really helped me in coming to terms with it.

Did I go through denial?  Yes.  Did I go through grieving?  Yes, absolutely.  A diagnosis like this is completely devastating for a parent of a child with ASD.  You had all these dreams and aspirations and plans for what you wanted to do and wanted for this child since the day of his/her birth, all the things you wanted to experience with him/her.

A diagnosis like this shatters that.

It's okay to process the grief.  That was why I said that reading all those books really helped.  I've since learned that a diagnosis of ASD is devastating, yes, but as I've read many times, it is not a death sentence.  Depending on where on the spectrum a child with ASD is, a parent's job is to advocate for the needed support services for said child.

That said, I will go on writing this article under the assumption that you are located in the Philippines, are a parent of a child that was diagnosed with ASD, and that you're looking for information on your next steps.

So in the context of the Philippines, what support services are available for children on the spectrum?

Book Review: The Conscious Parent's Guide to Autism

Book Cover

Welcome back to yet another book review.  As I have mentioned before, R's diagnosis has caused an influx of information gathering.  This is the second book on ASD that I will be reviewing, and do expect a few more reviews as the days pass, as I do have three more Autism books on my "to-read" list.

And to quote from my previous review, "let me state that I did not get this book for free. My husband and I bought it while we were at the Manila International Book Fair 2017. So I hope that will put some thoughts of bias to rest.

Also, as a disclaimer of sorts, I will state that all that will be written from here on are my personal opinions and are not, in any way, meant to be taken as gospel truth or medical advice. I am not a medical practitioner or a child developmental expert. I am just a former teacher, a simple mother, a possibly autistic woman with a child who has autism."

Hope that's clear.  Now on to the review!

We're Seeing Progress!

It's a really huge thing once your silent child starts speaking.

A year ago, I read an article by Jenn Schleich, that really spoke to my heart.  R's speech delay had caused my husband and I much anxiety, and reading her article really articulated how we felt about it.

Some months ago, it popped up in my Facebook memories, and I read it again. The last part of her post really jumped out at me, I agreed so much with it. I will quote it here, in its entirety for context, and emphasis are mine.

Our speech pathologist often jokes that some day I will come to her and beg her to make him stop talking instead. It’s a joke intended to reassure, but when she says it I know there will never be a day when I say children should be seen and not heard. There will never be a day when I wish my children would just shut up. I will never again underestimate how important communication is; to talk amongst ourselves, to share stories, is to connect with another person. The most essential human ability is communication, because without it we are alone.

So, how has R been doing in the field of speech?

SPD and Language Delays

Yesterday, R had an awesome session of speech therapy, and we've been seeing a whole lot more improvements of him attempting to speak and experiment with sounds.  Last night, I caught him singing ABC to himself.  He never did that before.  And I'm really excited!  He could be conversing with us soon and I can't wait!

Then it got me thinking.  A lot of people have often asked me how SPD affected R's language development, and how it has caused him such a delay.  So I thought I'd do a bit of research and share what I've learned.

In my previous post I talked about how essential pretend play is to language development.  I had also discussed even earlier on the link between SPD with oral motor problems, orofacial apraxia, and even Childhood Apraxia of Speech (CAS).

Today we will discuss about the usual language development of children and how SPD can affect this.

So let's jump right in!

SPD and Pretend Play

For his birthday last year, R's godfather, my husband's best friend, got him the LeapReader in hopes that he will start reading and writing soon.  R loved it and started using it on the books that came with the present.  His interest in the books waned soon, but strangely enough, his interest in the pen didn't.

R has also been taking notice of the things my husband and I do, especially when we talk on the phone.  He even insists on being the one to hang up the calls on our cellphones.  So I wasn't too surprised when he started putting the pen to his ears, turning it on and off, then waving to it with a "buh-buh" (his word for "bye bye" which he has pretty much learned how to say for quite some time).

However, he totally surprised me last night when he was playing with the LeapReader.  He put it to his ear, and started to babble, as though he was making conversation.  This went on for a good 3 minutes.  And then, as if to end the conversation, I heard him say, "Ok.  Buh-buh."

It took a solid ten seconds to dawn on me that he was pretending.  He was actually pretending!

I know what you're thinking.  Why is this such a big deal?

Remember one of my older posts where I mentioned the 5 signs that a child is about to talk?  Well, I mentioned there that R only exhibits 4 of the 5.  The fifth is symbolic or pretend play.  Apparently, pretend play is an essential developmental milestone for a child to learn how to speak.

So how does pretend play affect speech?

Little Victories

And so it's official, we are enrolled as a homeschooling family with TMA Homeschool.

UPDATE 11/4/2016: TMA Homeschool is now known as Homeschool Global.

I went and attended Curriculum Day today, and listened to a short talk by Joy Tan-chi Mendoza on how to choose books and material that will be customized for the needs of the kids.  I liked how flexible it was, and with R counted as a special needs kid, it gives me a whole lot more leeway on how to teach him, considering he's not really speaking yet.

And some of the slides shown are the following:

SPD and Oral Motor Problems

You also mentioned that R has aversions to certain food textures due to SPD.  Could that be related to his speech delay?

If you were to ask R's speech language pathologist (SLP), the answer is a resounding yes.  One of the red flags of SPD is language delay as well as feeding problems.  We had R assessed by an SLP around the same time as the OT, then another assessment with the SLP a few months after consistent OT sessions.

Language works in two ways- expressive and receptive.  Receptive language basically is how we understand words.  It's the ability to understand language.  This is how we learn to associate words with items and contexts.  Expressive language is the use of words, sentences and basically language.

SPD vs ASD vs ADD

What makes SPD different from Autism and Attention Deficit Disorder?

As I stated in my previous post, sometimes SPD gets mistaken for Autism Spectrum Disorder (ASD) or Attention Deficit Disorder (ADD).  When R turned 15 months, our regular pediatrician was definitely concerned at his fleeting eye contact, hand flapping, his lack of imitation skills and non-existent pretend play.  She was worried he could be autistic, and his constant need of motion suggested ADD.  The developmental pediatrician and OT, however, assured us that R is perfectly normal, and that SPD is actually very common and not a huge cause for concern with early intervention.

The SPD Foundation has an informational page on how to distinguish between SPD, ASD and ADD.  Basically, all kids who have ASD or ADD also have SPD.  But not all kids with SPD have ASD or ADD. 

SPD Signs and Next Steps

What are the signs that I or my child might have SPD?

Sensory Processing Disorder is a spectrum, meaning one could range from being very mild to very severe.  No two cases of SPD is the same, which is what makes diagnosing it so complicated.  Some are wrongly diagnosed as having autism or attention deficit disorder, because the behavior patterns are quite similar.

As such, I can only share my experience with my son R.  He was born a month premature and spent some time in the Neonatal Intensive Care Unit.  He had also been back a few times due to jaundice and after that, developed normally as he could.