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So, we’re trying to fine-tune Justin’s sleep before baby comes since he’s been waking 2-3 times a night, and sleeping so restlessly (like rolling on to the floor a few times a night even), and then being a total bear the next day. So, at the advice of Justin’s Developmental Pediatrician at Children’s, we tried last night to just use one of his 2 sleep meds (with the thinking being that he was losing sensitivity to the other – so take him off for a week, add it back…). He slept maybe 1.5-2hrs at regular time, then woke up and was up playing until 4am! Whooo boy! I’m thinking the other med is still working! At least somewhat!

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It’s been a strange couple of months at our home.

In January we found out we were pregnant again. Then that ended on March 6th after being what some call a “walking tomb” for a day shy of 6 weeks with an emergency d&c for hemorraging.

On April 23rd we discovered we were pregnant once again, and with a mix of joy and fear Matt and I looked to what our lives might hold in the next year. We saw a beautiful little heartbeat last Tuesday. I have some video of it and watch it a couple of times every day – especially when I’m sick or otherwise wondering if all the drama is worth it. Things are going swimmingly with my pregnancy – and I am so very thankful.

In all this timult – the joy falling to grief, turning to coping, then hope, then joy again – someone has been missing something from his Momma. Or maybe he’s just scared of all the change he’s seeing in me. Either way, my dear, sweet Justin has changed in his behavior to me and it has broken my heart.

I have been a mom for 4 years, 2 months (not counting gestation). 2.5 of those years have been with the knowledge that my son is Autistic.  My relationship with my son and I has had ups and downs – it’s normal.   In the end, I have always been his rock.  The one he goes to when he’s sick, or has an owie, or wants to cuddle with before bed.  Until now.

I have just encountered the hardest part of my parenting journey so far:

In the last few months my son’s behavior has changed so drastically toward me that I barely recognize him.  He now actively ignores me and tells me to “go bye-bye” at every opportunity, denies me all physical touch, and refuses all of my attempts to feed him, change him or dress him.  I work outside the home, a full 40 hours – and wonky unreliable ones at that.  But then it has always been that way.

Now we figure out where to go from here.  For now though, I’m getting kinda raw.  I miss my son.  The one who, even if he never said “I love you, Momma” (Clarification: he has uttered some form of those words only twice: once at his pediatrician’s office, and once in our home – both were echolalic.) showed affection in other ways.

Matt is working on scheduling Momma/Justin date time into their schedule each day – but it’s tough to work in when Justin has school in the morning, and I work the rest of the day until just before bedtime.

Any ideas?

Random story: Last night, Justin was NOT interested in sleep or anything related to resting at 11pm. He WAS interested in playing with his talking Spiderman toy.

I told him that in 5 minutes, it would be Spiderman’s bedtime. So I got a pillow, and a towel as a blanket, and told him that Spiderman would sleep there (of course, Justin found this whole idea offensive since towels only have one purpose – thanks, Autism). So, with that idea out the window, I asked him to help get Spiderman ready for sleep. I expected Justin to ignore me. He didn’t. He decided that cuddling spiderman and “give Spiderman yummies” was how to do it. Except, Justin wasn’t giving him food. Nope. My 3-year-old had puffed out his chest and put Spiderman’s face to his breast over his shirt. Yup. Justin “nursed” Spiderman to help him to sleep.

This is despite him not having nursed since he was 25-months-old, and having had little exposure to it since.

Justin is 3-years-old.  He has Autism.

Some folks I’ve met have a hard time with me saying that – that he has Autism.

Very early on in our journey with Justin, we had to make a family decision: do we keep his diagnosis private, or do we make it a part of our lives, accepting it as matter-of-factly as the fact that we all wear clothes?

Our decision was the latter, and this is why:

Our world is full of labels.  Some labels are useful, helpful even.  Others are not, and may even be harmful.  We decided that with Justin’s diagnosis, “Autism” was a useful and helpful label.  Some might think, “Well, that’s a good crutch!” or “Wow, so, um, you use that whenever you want sympathy then, right?”  and I’m sure some people might use it that way.  That has never been our intention.  Early on, the label validated our concerns.  It gave evidence to our assertions that Justin, our first and only child, is not easy to manage – that our struggles were more than that of most first time parents adjusting to a new role in life.  In that regard, the label of “Autism” was a breath of fresh air.  It meant that others knew we weren’t crazy for being tired all the time – because their Autistic children didn’t sleep either and it had nothing to do with “sleep training”.

My husbands assertion was that we could make use of a label that meant something – that actually gives information – or we can let the world label our son.   Having attended public school ourselves, we could think of some of the labels he’d get that would be far worse than “Autism” – you know, like “retard”, “spaz”, “loner”, “jerk”, “creep”, and “weirdo” to name a few.

We are fortunate that Justin is as high-functioning as he is.  He has words even if he doesn’t always use them properly, or for the same reasons as us “neurotypicals”.  But unlike our friends with physical disabilities, you can’t see Justin’s label on his face.

I’ll never forget the first time I told a stranger that Justin had Autism.  We were at the soft play area at our mall and it was time to go.  I called for Justin, counted down “5 minutes” as always (we learned early on that giving him a count down provides a consistent and non-negotiable endpoint), and called for him again.  He almost never responds to his name being called.  It’s not personal.  He just can’t filter out my calling his name from the other noise and commotion – not to mention, in Justin’s world, words are used for describing objects, not for more complex meanings like “come here”.  Justin was running around the play area, feeding off the energy of the other kids playing chase (he gets excited and runs, but does not ‘get’ that they are playing a game with any structure – to him, they’re just enjoying running for running’s sake).  When I called again, then approached him, squeezed his shoulder and got down on his level and told him for the 2nd time that it was “time for socks and boots” and he ran away again, a woman I’d been shooting the breeze with said to Justin, “You need to listen to your mommy.”

Now, I totally understand that fear of strangers can be used to a correctional capacity in toddlers, and I definitely appreciate that.  In this case, she had no idea why I was just letting it go every time he’d rebuff my request.  For myself, I was using it to gauge the best way to get Justin into his socks and boots.  I told her that it was okay and that he wasn’t trying to be rude.  I went, got on Justin’s level (though not looking him in the eye), and told him, “Justin, it is time for socks and boots” and I picked him up and calmly sat him in the seat at the edge of the play area next to the woman and before putting on socks grabbed Justin’s shins and pushed his knees hard into his chest, repeating it several times.  With each compression Justin calmed, and after 3-4 compressions, he was able to sit still long enough for me to put on his socks and boots.  The woman just sat there aghast.  I could see in her face, “she’s not going to reprimand him?  what the heck is she doing?  How is that going to help him comply?!”.  When it worked, I just smiled and said, “My son has Autism.  It means it’s very hard for him to listen and understand my words, and when he’s excited like this, these ‘squishes’ help him calm and focus.”  What did this accomplish?  Well, Justin let me carry him peacefully from the play area; the woman was clearly in shock that I hadn’t lost my cool, that I wasn’t afraid of looking crazy with my odd approach to the situation, plus, I taught her something new about Autism; and I felt good knowing that I’d appropriately managed my son’s needs AND accomplished the task at hand.

Wha-bam!

There are tons of reasons to share about Autism to people.  Awareness is a faculty of advocacy.  Some studies show that as many as 1 in 148 children have some form of Autism Spectrum Disorder.   Socially, Autism is characterized by behaviors that often look like defiance, rudeness, being aloof, or just plain naughty.  I feel that the more aware people are that Autism is in their midst, the more patient and understanding we can be with one another.  Yes, there are crappy parents out there, but we all need to bear in mind that there is often more than meets the eye in our casual observance of other people’s children.

Whoa whoa whoa!  “Autism” is an excuse for poor manners?  Certainly not.  BUT.  Teaching social niceties, like not screaming in a restaurant (especially when screaming outside is okay), to a child with Autism is VERY difficult and not an exact science.  They often lack the ability to generalize or categorize when it is okay vs. when it isn’t so you have to teach it anew in EVERY situation – over and over again.  This of course means that there will be moments where, for example, “breakthrough screaming” may occur with little or no warning.   It’s a lot like lion taming.  For all the training in the world, a lion is still a lion and a wild animal.  An Autistic child will, despite all the coaching in the world, have meltdowns from time to time (and, per Murphy’s Law, these meltdowns WILL occur at the least appropriate moment).  And since we don’t keep Autistic children in cages in this country, there will occasionally be casualties.  But I digress…

Other useful labels:

“Biohazard”

“Women’s Restroom”

“Cinnamon”

“Hospital”

“Expires 12-24-2006”

In my last post, I alluded to Justin not being a typical kid.  He’s not.  But neither was I or Matt for that matter – though not for the same reasons.  This last year has been a year of self-discovery.  of horror.  of pain and suffering.  of deepest joy and greatest gratitude.

This last year we learned that our sweet, smart, quirky little boy has Autism.  Not “some signs”, but classic Autism.  A little Rain Man in our midst.

There were clues.  Clues we missed.  Hell, there were punches in the face we missed.  But as usual, hindsight is 20/20.

Justin had always had impressive well-child checks.  His growth was always notable – typically upwards of the 95th percentile for height and weight (still is).  He hit all his milestones and then some.  But we were getting more and more exhausted from lack of sleeep – Justin was still waking at night as frequently as a newborn and nothing seemed to help.  His outbursts were getting louder, more physical, and lasting longer over things that should have been easily redirected.  Then at his 18-month check, the checklist got a bit troubling.  2-word sentences?  Nope.  Copying drawn lines?  Nope.  For the time being, we chalked it up to being just before a developmental leap.  Justin’s pediatrician made the concerned face watching him aimlessly wander around the office, refusing eye contact, or direct attempts at communication.  Without trying to alarm us into a panic, she recommended we follow-up in a few months.  Note: While this may sound irresponsible on the pediatrician’s part, I am thankful for the slow “heads up”.  It allowed me the space to research, watch, investigate and ask questions rather than go into a full on panic.

Not a month after that visit, a good friend of ours at Church pulled me aside.  This friend has a son with profound Autism.  Her intent was not to alarm, just to let me know what she was seeing.  She pulled out old photo albums with her son in them.  As she pointed him out in the yearly Pascha picnic group pictures, you could see – his face looked different.  Not in a way that would suggest he was deformed or anything, if anything he was – is – a beautiful boy.  He was often looking in the direction of the camera, but not in the same way as the others in the picture.  Rather than looking at the person taking the picture, he was looking at the camera itself.  I recognized this boy.  Not because I knew him, but because I saw what my friend was seeing – she was seeing Justin.  That’s when it hit me.  It made it real.  We talked and cried for about an hour.  She told me how she saw behaviors in Justin (even in just the short period of time she saw him at Church) that were painfully similar to those of her son.  She couldn’t keep quiet.  And I thank God for her intervention.

The very next business day I called to schedule an appointment with Justin’s pediatrician.  It would be 3 long weeks before we could be seen.  The first week, I cried.  A lot.  The second week I searched, researched, and asked questions.  By the time we got to that appointment, I was sure.  And I had a sort-of plan. Justin’s MCHAT (Modified CHecklist for Autism in Toddlers) was so painfully positive (as in indicative of Autism) that we were nearly blind-sided.  We expected to see a weak positive – it can’t be that bad, we thought.  At the visit, the pediatrician filled out the referral forms for the Seattle Children’s Hospital Autism Center for a diagnosis.  I was told the waitlist for an evaluation was right around 6 months.  In the meantime I was to contact the Opportunity Council in town for a qualifying evaluation for entry into the local Zero to Three program for early intervention services.

Within a few days of my call to the Opportunity Council here in Bellingham, we had a woman in our home asking us questions.  LOTS of questions.  About Justin’s behavior, his responses to this and that, what he could or couldn’t do.  All the while watching Justin in his home environment.  At the end, Justin easily qualified for Early Intervention services.  In another week we would meet Justin’s Primary Coach – a speech/language pathologist from the Whatcom Center for Early Learning.  She would meet with us in our home at least once per week until Justin’s 3rd birthday.   Words cannot describe how she and the Occupational Therapist who sometimes visited along with her changed our lives.  By teaching us how to recognize sensory issues vs. communication difficulties, they gave us the tools to learn how to diffuse before the meltdown.

The Tuesday following his 3rd birthday, Justin started public special ed. preschool.  We’re starting to get a handle on our new life.  Justin is a lot of work.  But we know the scope of our journey – and we expect a great many surprises for good and for the not so easy-to-manage.  We still have much to learn as a family, and it is ridiculously hard sometimes.  But, it is what it is.  Autism.

Before I close, I want to toss out my “offical statement” regarding my beliefs about autism.  Advice comes from everywhere, and I know that most all of it is well-intentioned.  I appreciate comments and questions, but I ask that before you post, you read my statement on my beliefs about autism.  These are items I will not argue about because I’ve already researched them to death and consulted professionals.  Here ‘goes:

1.  I do not believe in a “cure” for Autism.  I know my son to have been born with Autism, he had it at his very conception and is a part of who he is.  To try to “cure” Justin’s autism would be an attempt to make him someone he is not.  Autism is not a disease, no more than Down’s Syndrome is.  It is a disorder to be managed and developed.  I believe Justin’s autism is a gift in its own right, complete with challenges and powerful strengths unique to him.

2.  Yes, I’ve read about people whose children were “cured” by certain changes in diet.  It is my belief that these children had food allergies that caused autistic-like symptoms that were abated once the offending food was removed from the diet.  Justin is sensitive to dairy but not wheat or gluten.  Justin’s perseverative behaviors, as well as ability to appropriately respond to his environment are magnified when he is given cows milk.   He drinks a lot of soy milk.

3. “He can’t be autistic, he looks at people!” – Really?  I look at lampposts, does that mean I’m autistic?  Justin is reasonably high-functioning.  He does interact with people but his interaction is different from that of neurotypicals.   He is affectionate in his own way with a select few people, namely his parents and grandparents and few others.  His primary interaction is for fullfilling of his needs and as a feature in a game – my husband and I refer to ourselves as Justin’s “buttons”.  He uses us as “buttons” to make whatever action in the activity work.

4.  I do not believe vaccines cause autism.  I have never been comfortable with the traditional vaccine schedule in the US for my own reasons.  Even before we knew Justin had autism, he was on a modified vaccine schedule.  He got most of his vaccinations on time with the exception of MMR and chicken pox which he received just before entering the public school system at the age of 3, rather than at age 1 as recommended.

5.  I do not believe Autism is a curse.  Now I do get down sometimes, frustrated, aggravated even – but it is my belief that this is a journey given to us, and Justin, by God for our Salvation.  To struggle is to be drawn to God, and that is its own blessing.

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