Officially an Autism Family

September 14, 2017.  Yesterday.  The day we officially became part of the autism family.

Looking for schools for R as he enters first grade has required us to update our documents, and one of the things we needed to do was to have an updated report on R's condition with a developmental pediatrician.

The official diagnosis is moderate autism.

The doctor is quite optimistic, as he says R has improved so much but he cannot discount his previous mannerisms.  He thinks that R can be brought to the high-functioning side of the spectrum, given that he has been receiving intervention as early as 2 years old.

He also says it's possible that I myself may be mildly autistic.

There's a lot to process here.

I haven't done that fully yet, but I guess that means there will be more resources for me to check out.  More book reviews, more internet articles to share, more information to process and learn.

It's a hard pill to swallow.  I admit that.  I suppose any parent would have a hard time.

But now I'm trying to learn not to see R through the lenses of autism.

May God help us.  May God enable and equip us.  May God grant us wisdom.

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, Abuse and Mental Health

Today's post might seem a little bit all over the page, so I'd like to apologize if it seems a bit jumbled.  But this has been a topic that has sitting in my mind for quite some time already.

I had touched on a previous post about how bullying is prevalent in the lives of children with special needs, and how this also translates to the same effects as one undergoing abuse of any form.  What we haven't touched on is how this then affects the mental health of our precious little ones.

So let's recap on the types of abuse that are out there, as defined by Childhelp:

1. Physical Abuse - the act of physically hurting a child. This includes "striking, kicking, burning, biting, hair pulling, choking, throwing, shoving, whipping or any other action that injures a child. Even if the caregiver didn’t mean to cause injury, when the child is injured it is abuse. Physical discipline from a parent that does not injure or impair a child is not considered abuse; however non-violent alternatives are always available."
2. Sexual Abuse - the act of using sex as a means to break down a child's self-worth and dignity. It is also "when an adult uses a child for sexual purposes or involves a child in sexual acts. It also includes when a child who is older or more powerful uses another child for sexual gratification or excitement."
3. Emotional or Psychological Abuse - "When a parent or caregiver harms a child’s mental and social development, or causes severe emotional harm, it is considered emotional abuse. While a single incident may be abuse, most often emotional abuse is a pattern of behavior that causes damage over time."
4. Child Neglect - This is when "a parent or caregiver does not give the care, supervision, affection and support needed for a child’s health, safety and well-being. Child neglect includes - physical neglect and inadequate supervision, emotional neglect, medical neglect, educational neglect."

Abuse is all about control and power.  And sadly a lot of children are victims to this sick game they play.  According to this article published on July 25, 2016 by the Philippine Daily Inquirer, a newspaper publication in the Philippines:

As many as 2,147 cases (emphasis mine) of child abuse were reported to the Department of Social Welfare and Development (DSWD) in the first quarter of this year, more than one–fourth of which was of a sexual nature.

The figure was nearly half of the total 4,374 child abuse cases reported in the entire year of 2015, according to the Policy Development and Planning Bureau of the DSWD.

That's a huge number and extremely distressing.  And the best way to combat this is by awareness.

So let's look at some of the common strategies used by abusers to manipulate their victims.

Things I am Learning as a Special Needs Parent

In any journey in life, there will always be lessons and takeaways we can glean.  Our experiences have always been a teacher in our lives, some even say the best teacher we could ever have.  I don't think this journey with R is any different. There's so much I have learned, so much I am still learning, and so much more I have yet to learn.

I credit my training and experience as a teacher for many of what I know about child-raising and teaching.  I credit the experience I had in caring for my baby brother (of course under the watchful eyes of my parents and little bro's caregivers) for giving me the opportunity to learn the skills on baby care.

I didn't go into parenting blind, but I don't think I was fully prepared for parenting either, much less being the parent of a special needs kid.

So here's what I have learned, and most likely still learning, about being a special needs parent.

Rude Remarks while Parenting a Special Needs Child

I had just read this article that was featured in The Sensory Spectrum, and it made me remember a similar incident that happened not too long ago.

I remember when, back in Hong Kong, I had to leave R with his dad for a little while. I wasn't feeling very well since I had eaten something that didn't sit well with me so I had to go the bathroom. R, on the other hand, was wired up, wouldn't settle, and it was way past his nap time. He couldn't sleep, simply because we were out and about.

I was having a hard time carrying and taking him around as the food poisoning was causing me to weaken, and even became feverish at one point in the day. So my husband and I decided to stop at a Starbucks coffee shop so he could get a drink for us, as well as get R calm for nap. I prepared a bottle of milk for him, laid him down on the sofa, and proceeded to the bathroom.

Homeschooling with SPD

Because it's been a while since I posted...

Merry Christmas!

Happy New Year!

新年快樂!

Now that it's out of the way... On to the topic at hand.

R and I have been homeschooling now for at least 18 weeks, not counting the weeks he had for Christmas and New Year breaks.  Over time we've done a few projects, some activities, and a lot of learning, mostly on my part.

Traveling with an SPD Kid

In the years we've had with R, we've had to travel quite a bit, whether it's out of town or overseas.  And even before the SPD diagnosis, we had discovered a few little things about him that made traveling a bit difficult.  R was exhibiting vestibular seeking methods even as early as a year old, when he would always want to go out no matter how tired we were.  He was also quite picky over a lot of foods and we needed to make an effort to seek out the food that he would actually eat.

The SPD diagnosis made a few things clearer to us in terms of his behaviors, and we did learn to adjust to his needs when traveling.  Not saying we're experts, but we've had a few experiences of R having a meltdown while we were overseas or out of town.  Needless to say, it's hard because when you're not in familiar environment, you need to get really creative.

I found a few posts online with tips for traveling with SPD.  You can read them at:

• Travel Tips for Parents of Children with Sensory Integration Issues
• Traveling with a Sensory Seeking Child
• 8 Tips for Flying with a Child with Sensory Processing Disorder
• Travel tips for kids with Sensory Processing Disorder

As for me, here are my tips for traveling with an SPD Kid.

SPD, the Interoceptive Sense and Toileting

Just when I thought I had nothing more to say about SPD, somehow R ends up manifesting this in yet another way.

It all started when we took R out for a day and ended up having a major meltdown in the mall.  The trigger, the toilet flush.

Now, R has been relatively easy to potty train considering he has SPD.  I've read of many parents who had such a hard time with this, even without the sensory issues.  But in R's case, his love for the toilet flushing and his dislike of wet clothes actually ended up stimulating him to use the toilet more and the diapers less.

But let's go back to the very beginning in terms of his toilet habits, shall we?  And no, please don't think I'm shaming him.  I actually want this to be a teaching moment, for me and my hubby, for R, and for anyone going through something similar.

So, let's discuss!

When will my Child be Normal?

R and I have been sick for past few weeks, and just started to recover.  After our visit to ChildFind (who gave us the go ahead to homeschool for 2 years, YAY!), he got a cold, which I also caught.  We recovered in time, or so we thought, for our family vacation to Japan, which was awesome.  But coming home, R went down with bad ear pain, and got otitis media (middle ear infection).

He was put on antibiotics, but the sleepless nights of caring for him got to me and I succumbed.  I'm on the mend now, still not 100% but getting there.

I did do a lot of thinking time while I was recovering, and encountered a couple of posts that were comforting.

Be Kind

Yesterday I read this article published by The Age newspaper based in Melbourne, Australia.

It got me thinking.

Last year, when R was recently diagnosed, I struggled with the question, "Does this mean I have a special needs child?"

I was also asked that of several well-meaning people, although at the time it was hard to answer.  Because R seemed so normal aside from his speech delay, it was really hard to come to terms with whether or not he was a special needs kid.

Admittedly, I as a parent would not have actively chosen to have a kid who has special needs.  I realized that while I am taking this journey with R.  But for reasons I have yet to fully understand, God has blessed us with this little boy, SPD and all.

And by His grace, I know that there are others in worse situations than us.

I am in several Facebook groups.  In one of them, I read of a little guy named Caleb Munn.  As of this posting he is eight months old, and is recovering from a liver transplant.

Yes you read that right.

Caleb was diagnosed at two months old with a severe liver disease called Biliary Atresia.

SPD and Weaning

When I was pregnant, a good friend of ours who happened to be a doctor advised me to breastfeed my baby.  Hubby and I were naturally agreeable to that, and I spent many weeks during that time studying and learning everything I can about it.

I read up and watched everything I could get.  From Dr. Jack Newman's breastfeeding videos, to On Becoming Babywise by Gary Ezzo.  I will comment on the latter some other day as it's really long and might cause controversy.  Suffice to say that by the time R was born, it wasn't really of much help to me.

SPD and Bullying

Last week, I came across this amazing post shared by Dayna of Lemon Lime Adventures.  It was written anonymously by a mother who also lives with SPD while raising her three daughters who were also diagnosed with the same.

A lot of it rang true for me.  Living with SPD, albeit unknowingly for so many years, was not easy.  And it wasn't helpful to grow up with bullying that comes due to misinformation and misunderstandings.  I was labelled "weird", "clumsy", "uncoordinated" (this despite the fact that I liked to dance), and was oftentimes excluded from many activities from my peers due to this.

And now I am a mother of a boy who exhibits many of the same characteristics I had growing up-  the running, the jumping, the bumping into things, the habit of looking back while I walked forward, the spinning, and so on.  I want to protect him from the bullying and disdain I had experienced growing up, and the best way to combat this is through raising awareness.

And this got me thinking about another topic I am equally passionate about- child abuse.

SPD and Sleep Issues

It's common knowledge that having a child will result in less sleep for the parents, especially during the newborn stage.  The demands of a little bundle can be quite taxing, and one of the usual questions I got when R was a baby was, "Are you sleeping well enough?"

Usually the nights get better as the baby gets older.  But if you were to ask my mother, that was not the case with me.  She told me that at six or seven months old, when I learned to crawl, I would spend the evenings playing with my toys on the floor, while my poor exhausted parents dimmed the bedroom lights in efforts to get me to sleep.  All that was in vain as the dark didn't bother me at all and I continued to play into the night.

Fast forward some twenty something years, and R came into our lives.  I wouldn't say R wasn't a good sleeper, but he did go to bed later than most other babies I knew.  And so with his case of SPD came some sleep issues.

SPD and Homeschooling

You're planning to do WHAT?!

Yep, we've decided to homeschool R.  We've even gone to seminars with TMA Homeschool and hubby and I are ready to jump in.

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

But it's not totally final yet.

The SPD Kid in School

This post was featured in The Sensory Spectrum on March 26, 2016.

How does SPD affect a child's behavior in school?

As I used to teach elementary and pre-school, I've seen many behaviors that are quickly labelled as "naughty" or "disobedient".  This is an unfair label due to the fact that SPD kids cannot control themselves when they are overloaded with sensory inputs and having a sensory meltdown.  As such, I feel that many of these kids go through their school years with a reputation that no one really likes to carry.

In my experience growing up unknowingly with SPD, it was very common for my classmates and teachers to label me as "weird" due to my little quirks.  I would be the girl everyone would see walking all over the school during recess and/or lunch.

I'm not kidding when I said all over the school, I really mean all over the school.

There were times I didn't just walk.  I ran.

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.

The Seven Senses and Sensory Diets

We have more than 5 senses?!

Five Senses by Hi-5 © 2011-2012

As kids we were taught that we have five senses - sight, touch, taste, hearing and smell.  That's pretty standard, and quite well known, even made into a song by the famous group Hi-5.

But we don't have just five senses.  Not even seven.  We actually have around 14 to 20 senses, depending on which expert you speak to.  But for the purpose of SPD, the senses are usually classified to seven.

So what are the seven senses?

Tantrum and Meltdown Examples

Can you share how you learned to differentiate a tantrum from a meltdown with R?

R is quite an expressive kid, and even with his speech delay, he will let you know if he's upset.  We were able to tell the difference between a tantrum and a meltdown really by finding out the source of his distress.

Tantrums vs Sensory Meltdowns

Okay, so you mentioned about how children respond when overwhelmed with sensory issues.  How is that different from normal toddler tantrums?

That is an excellent question that hubby and I also at one point asked R's OT.  True, toddlers, and even pre-school aged children throw tantrums when they don't get their way.  Both look very similar because both involve an upset child.

SPD vs Sensory Preferences

I've heard of many kids who have aversions to many things, especially during toddlerhood.  How do you know this is SPD and not just a matter of preference?

My husband asked our son's OT the very same question.  She explained that we all have sensory preferences.  For instance, some people don't like how clay feels on their fingers.  Others don't like the sensation of lace on their skin.  Some others just don't like certain foods because of they way they feel going down their digestive tract.

Sensory preferences are just that, preferences.  But if you were to ask these same people, and if they do not have SPD, to tolerate said sensations for a short while, they will and won't make a huge fuss about it.  They can cope with the sensations no matter how unpleasant it is.