Monday, July 19, 2010


I often get asked, 'When did you know something wasn't right with M?'
I don't believe our situation has been quite the same as so many families who have a child with autism, so I thought I'd share it with you.
M was a happy, healthy boy born past my due date by induction.  (and, yes, this is one of the many things that I sometimes torture myself with as I think of the 'what ifs')

He was bearing weight on his legs at an early age.  He smiled on time.  He held his head up strongly.  He sat up early.  The one milestone he didn't make that first six months was rolling over, but we'd seen it happen one time and thought it wasn't a big deal.

Around six months our happy boy began to do a few things that puzzled us.  He would incessantly shake his head-a giant grin on his face-as though he were trying to say 'no.'  I mentioned it several times to my pediatrician in conjunction with the note that we also have a nephew on the spectrum, and each time I was brushed aside like I was saying the silliest thing she'd ever heard.  M's head was also in the 95th+ percentile, which we questioned as well.  Though in truth, my family has a history of giant Polish/Irish noggins!

At nine months M began to do another strange thing.  While sitting up, and generally when he was very excited, he would put his little hands in fists out in front of him, tense his whole body to the point of shaking ever so slightly, and yell out happily, 'EEEEEEE!'
Again, I brought up this peculiarity to my pediatrician.  Again, I was told, and I quote, 'This child is NOT autistic.'

A year came and I can recall looking at photos much later how withdrawn and timid he seemed at his birthday party as his Aunt K held him during present-opening time.  I vividly remember saying that it was probably because he didn't know her well yet and was being shy.  But was it really that, or did he falter further after his one-year checkup?  I will never really know.  I always am careful to tell people that were were not one of those families who saw overnight changes in M after a vaccine.   There were the signs I mentioned earlier that tell us he experienced delays from birth.  I try not to get too obsessive or caught up in the vaccine debate, but in my humble opinion, I do wish that I had spread out and declined some of the vaccinations I did give him.

Back to his first year...I became very ill right around that time with a mystery, mega-virus for three whole months.  Multiple tests and trips to specialists (including a rheumatologist since my mother has severe rheumatoid arthritis) brought up nothing but a faint positive on the mono spot test.  It was the rheumatologist who told me that I likely did not have mono, but a mega virus that mimicked it with no name.  Regardless, it was the scariest kind of sick I have ever been and it left me in an awful state of depression.

M wasn't crawling at this point, yet another thing I had pointed out in concern to my pediatrician.  Even though I knew in my heart that this wasn't right, I remember feeling so ill that I was silently grateful for his immobility at the time.  It was about a month into this that my brother-in-law, the father of our nephew who is on the spectrum, spoke to my husband about his concerns for M's development.

When the other half came to me I felt very angry and defensive.  I do feel sorrow for my initial reaction.  I know now that it came from a place of love.  My main reason for such defense, however, was that I felt no one believed that I had been concerned or asking questions leading up to that point.  I have since that time learned on far too many occasions that a parent really does have to come to the point of seeing things for what they are mostly on their own.  I am grateful that my brother-in-law prodded us to seek an evaluation from early intervention, but I am also grateful that the prodding was left at that and not taken too much further.  I think just as a new parent needs her baby to sleep lots, then crawl, then walk...nature's way of preparing you for the next stage gradually, a parent of a child with special needs often also needs those baby steps to ease them into the hand they are dealt.

Our (less-than-stellar) pediatric neurologist that we began seeing around 18 months also would continually tell us that 'something was going on, but he didn't think it was autism.'  Many specialists would say this to us as M did seem to have a certain engagement to him that didn't seem typical of so many autistic children.  (*Please note that I firmly believe that ALL children on the spectrum have the desire and potential to engage and form relationships.)  And then there is the almost-laughable labels that he gave us; the ones so many of you parents of autistic children also received:  sensory integration dysfunction and global delays.  I would love to know just how many children are given those descriptives and DON'T later end up with an autism spectrum diagnosis?  Again, maybe it's all part of the settling-down-with-it process.  Less scary words to help you ease into the whammy that lies ahead...

And yet, when we did finally get the A-word whammy, it was actually quite less of a big deal for me.  I was alone with M at our yearly appointment.  He was 4 1/2 years old by this point and had been seeing a slew of therapists and specialists for over three years by then.  I calmly waited for the doctor to come in and calmly accepted his speech that went something like this:

Dr:  Well, I suppose it's time we put a name to this.
Me:  Yep.  I figured you would say that this time.
Dr. (totally non-plussed, no emotion) I believe M has high-functioning autism.  (and here's where you'll probably get the same chuckle I did when I left the office) Some people call it PDD-NOS, others call it Aspbergers.
Me:  Ok.  That's what I thought.
Dr.:  We'll see him in six months to a year.
Me:  Ok

Done.  That was it.  I didn't feel like I died that day.  I think I'd died a hundred small deaths already before then.  I didn't feel like someone had hit me with a baseball bat.  I felt totally at ease.  I called the other half on the way home and matter-of-factly told him what the verdict was.  (though I always said PDD-NOS because even I am not so much of an idiot as to think that is the same thing as Aspberger's...seriously!!)

I was somewhat delighted to be able to stop telling people, 'Oh, my son has sensory processing issues and global delays.'  The word 'autism' is a hell of a lot shorter and has much greater meaning to the general public, as vast as the spectrum is, and as little as people really do understand it.

The 'other health impairment' diagnosis that allowed him to be accepted into the public school's special ed. preschool program was quietly changed to autism.  We were two months from moving from the mother ship to California and this change would allow us to receive more services than OHI would have.

Unfortunately that high-functioning diagnosis would not hold and I will never know if it could have had we stayed in Texas.  Our boy, as you probably know, has plummeted and regressed into the world of moderate to severely afflicted autism.  This began when he was nearly five, a sad situation I have not found duplicated yet through all of the families I have met in person or virtually.  

I suppose the purpose of me writing this here and sharing it with you is twofold.  First, I need to document these things for myself, in hopes that one day I can read it again and think, 'My, how far we have come!'  But I also want to document it in case one of you readers is following a similar path.  I am knee-deep in the emotions that come along with autism.  I am often barely able to fully help myself find my way through it all.  But I know that the one thing I can fully offer up is a type of mentorship to those who walk this path after me, just as so many--like Susan Senator or Casdok--do for me.  Because it helps to not feel so damned alone in this all the time.  And let's face it, even though the numbers are an astounding 1 in 91, you can still feel like the last one picked for the team.  Sometimes I, as outgoing and personable as I may seem outwardly, feel almost autistic myself.  And, perhaps, that is just nature's way of also helping me to understand just a little more...


Ro said...

It was a weight off our shoulders once the A word was uttered; we knew it, the doctors knew it, the specialists knew it.
Some friends and family refused to believe it *rolls eyes*.
Once we had that word we could fight it, or that's how it seemed.

Valerie Foley said...


I seriously love you. You tell your story with such honesty and clarity that it can only help others.

I LOVE the photos of you and M through the journey, and look forward to seeing the next batch.

I really hope some answers come to you guys... Just as a side issue, has anyone ever spoken to you guys about Landau-Kleffner Syndrome?

When Billy had Transverse Myelitis, it was one of their first ports of call, and it tends to hit boys between 4 and 8, robbing language and challenging all kinds of ASD-style neuro functions.

M is all kinds of beautiful, IMO, and don't get me started on his Mama.


Alicia D said...

thank you for sharing this story. so much of it mirrors my own process of "uncovery" with my daughter.

Christine said...

I wish I had taken the time to write about my son's early development when I could still remember it!! I do remember looking back on his infancy after we got the diagnosis and seeing many things in a new light. But, as you said, in most cases we just never really know.

This is a great post because it obviously comes from a place of great love.

Kim said...

Lots of things in your story are just like mine. This is a great idea to document the early years. I've already forgotten so much.

Jenn E said...

I hear you. Although Devin was so delayed when diagnosed just 1 months after his 2nd birthday, his first two years go just like M's.

I hear you. I understand.

Anonymous said...

This is such a thoughtful and well-written post. Thank you.

I know of 2 other bloggers whose children have LKS - if you decide to explore that diagnosis.

Meantime, you and the other commenters might be interested in this new blog:


Mama Deb said...

Thanks, all, for your kind and supportive comments. We have actually looked thoroughly into the possibility of Landau-Kleffner syndrome. Last March when we did the EEG and MRI we were looking for signs of seizures and LKS, but saw none. They only found the rare, right brain wave spike in the right frontal lobe that is consistent with children on the spectrum and puts him at a higher risk of seizures. I keep feeling like there has to be a eureka moment out their for us and that's another reason we're going to go see the ENT. Thanks again.

redheadmomma said...

this is so great - fantastic documentation with your clear voice coming right through. XO R

K- floortime lite mama said...

many many many many hugs Deb