Thursday, February 6, 2014

Some things we noticed, some others did, and some Dr. Google showed us...

I can't remember exactly how this all ran together and in which order, but I remember Evan (aka the middle boy) had a basketball game, and it was a playoff one, so a big deal. I had already missed his draft ceremony in person and I refused to miss this important event. We all went, and I even sat off to the side by myself with Dylan because I figured he was going to become over-stimulated and I didn't want to disturb other parents.  Because, let's be honest, we've all been there.  Somebody's kid is loud in a restaurant, or talks loudly in the movies, and you are quick to judge they are just 'bad' or 'obnoxious'. Guilty here on many occasions.  

He screamed, he took his shoes off (this is a big one for us that can cause me a many sweaty meltdown), he wouldn't sit in the stroller, wouldn't stand.  Picked dirt off the floor and basically just squealed.  I tried so hard to watch Evan play, but it was impossible.  I looked like I was teaching a toddler yoga class in the corner of the gym, with a highly unqualified teacher and one irritable student. I was defeated.  Packed up Dyl and sat him in the truck.  Turned on the heat and let a Mickey DVD play while the snow came down, along with a few tears of frustration and a few nasty words.  The husband texted me to say he was coming to trade places with me so I could watch the second half of the game.  And that's how life had seemingly become. Trade-off parenting.  It sucked.  And it was taking a toll.

Around this same time (like I said, I can't remember the order, but this is all within the past month), I had a friend who had graciously offered to watch Dylan when I needed a break. We had known each other for quite a while, as our oldest boys went to daycare together until 1st grade or so, but something with Dylan seemed to spark something more in our friendship, and to this day I am thankful for her intuition and honesty. Her son was diagnosed with epilepsy at age 3, and she is a huge advocate for awareness and an advocate for her son and other children with neurological disorders.  She spent time with Dyl while I would shop, or do a load of laundry, or just run errands....she had heard me in the past say he had 'staring spells' and wouldn’t answer me or say any real words.  She noticed a video I had posted on FB, and I had posted it to show how cute I thought it was that Dylan was mimicking his older brother.  I know how hard it was her to have that conversation with me, and when someone calls you and says “I need to have a difficult conversation with you and I’m stalling…..”, my first thought, being me,  is “Oh shit.  Now what have I gone and done?”  With all seriousness though, she wanted to point out a few things in the video where Dylan stops, stares and ‘shakes’, also known as absence seizures. (Attaching video at end of this..)  I, of course, had never heard of these, but took what she said to heart and immediately called my ped the next day (who also was her son’s ped).

Dr. K looked Dylan over, listened to me and suggested we go to the Children’s Hospital nearby in the city to see a neurologist, get an EEG and start Dylan with Child Development Watch (early intervention).  I was familiar with CDW because my other children had greatly benefitted from their services in their early years (one for hyptonia, one for speech).  Still, I felt pretty confident Dylan was just a little behind on his speech and there was nothing else to worry about.

We got into the neurologist within 2 days and the hospital was packed.  We had Dylan in a wagon, with his favorite stinky blanket, the Ipad, Mickey mouse, and multiple snacks.  He was not a fan of the waiting room, and between my husband and I, we had another sweat session.  When the doc saw him, talked to us, used the M-Chat questionnaire, more talking, more trying to engage Dylan, etc.  She handed us a sheet of paper that basically said “Diagnosis:  Autism Spectrum, active.”  Said crisply, “I know that’s not what you want to hear but good for you bringing him so early.  You can still turn this around.” 


Disbelief…relief…can those emotions run together?  Yes, yes they can.  I couldn’t believe my son, who is my eyes was perfect, had this ‘label’.  At the same time, I was relieved there was a ‘label’ to give us understanding, help and medical services.  It was a long day and a range of emotions, it’s still that raw sometimes to me here 2 weeks later.

Introduction and first post! Yay!

I have decided, in an effort to keep my brain from frying with the overload of changes and information coming in and out of my world, to keep a blog about what we are going through with Dylan.  Our son has recently been diagnosed on the autistic spectrum and we are still making our way and finding out everything we can.  I am new to this, so this isn’t fancy or tech-savvy.  I curse a teensy bit when it’s the right time for a sentence enhancer, and I will shoot straight.  I may also have some typing errors, putting pen to paper or finger to keyboard, and I won’t proofread it all.  Everything I say is never meant to offend, just to keep it real.  Most people who know the real me know the heart is here under the layers of crazy and anxiety.   I’m hoping there are others out there who can either find solace, a laugh or just an understanding.  

Dylan was a blessing after thinking for the longest time we were ‘done’.  I always felt a heart tug for one more child before 40, and was able to bring my husband on board right before my 37th birthday.  It involved a good bit of alcohol, but luckily fertility is not a fickle force with this family.  Once we found out, we started pouring over our oldest boys (11 and 8 at the time) photo albums and videos….so excited to be experiencing Elmo Live, Mickey Mouse and Dora again!  It seemed so long ago and would be such a welcome addition to a life full of basketball, Call of Duty, WWE and nerf guns.

Dylan was born on October 15, 2012, almost a week overdue.  He was on his own timetable and came a day before a scheduled induction.  Perfect in every way.  Eight pounds, eight ounces.  His brothers adored him.  We went home on schedule and thus began another adventure in raising boys.  Family of four becomes family of five….

Fast forward…..(which seems to be how life goes, doesn’t it?).  Everything about Dylan seemed to be moving along as it should.  Rolled, sat up, crawled, walked….hitting all the milestones, some even early.  One thing we noticed however, was his lack of trying to speak or communicate.  He didn’t look us in the eye often.  As we would say then, “What a serious boy you are!”  “How can we make you laugh!?”  Never gave it much thought.  I even remember once my middle boy said “How come Dylan isn’t as much fun as xx’s brother (or sister)?” It broke my heart, but honestly, I did just think Dyl Pickle (our nickname for him) was just, well, serious and independent  He would not answer to his own name or follow any direction or do any group play.  Other children made him anxious.  He was a difficult child to be around sometimes. And I say this in present tense, because when this was all coming to a head, I just thought, well this is what being a stay-at-home mom is like, I guess.  I had never stayed home with the other boys more than 4 months, and well, in 9 years, things change.  I began to crumble a bit and sought help for myself (another blog, another story!).  I will say this much - Post partum depression is real, it is treatable and it is okay to advocate for yourself. 


He didn’t cuddle, he didn’t hug.  He started to show interest in ‘routines’ that HAD to be followed.  Opening and shutting the same cabinet, touching a speck of dust in the window sill, or obsessing over the dust particles in a sun beam.  Another thing we just chalked up to him being an oddball, or ‘taking after his mother’.  I am a self-proclaimed clean freak, so even saying I have dust in my sunbeams is a step!   Several times we had to take him out of public places or find other arrangements so we could enjoy time with the older boys and not be so focused on the baby all time.  There were vacations to take, games to watch and  age-appropriate chats to be had.  But Dylan would not have it.  He even freaked out at his own birthday party and we had to take him home. It really began to make me feel guilty…. Cue the worry starting to creep in along with an intuition something was ‘off’…..