Sunday, January 26, 2014

Our Special Needs Journey:Child #3 - Dean's Story (Special Needs & Health Issues)

Well, after 6 months from his initial consult, we have survived his 2-day evaluation and I sat down with the Eval Team for some answers - and direction on our next steps.  I love my children, I want to parent each of them in the way that is best for that child.  There is not a one-size-fits-all parenting tactic for our family. And with Dean, I needed answers.

My pregnancy with him was, as always, full of complications.  Hyperemesis (translation: super vomit)
plagued the first half, bedrest began at only 17 weeks. I had a subchorionic hemorrhage and although this is not always an issue, as it can heal, this pregnancy it WAS a problem.  The hole in the placenta was growing and reducing nutrition to the baby.

I was given P17 injections weekly (in the bum), spent ALL my time in a recliner, attempting to work from home with a laptop and a cell phone, going in for twice-weekly ultrasounds and snagging a shower every 3-4 days. It was certainly tough, with one kid in elementary school and one in a special ed preschool (this was just before we began our homeschool journey), and both Dan and I working full time.

Steroid shots for his lungs were given as well as many rounds of terbutaline to stall preterm labor. It all paid off and my water broke 4 am on Day 1 of Week 37! Not a preemie!! Due to meconium in my water, he was briefly in the ICU, but was able to come home when I was discharged - the first time ever!

This was a time in our lives when we really learned what relying fully, completely, whole-heartedly on Christ every single moment of each day. I remember making it to 24 weeks and dropping to my knees in prayer (not easy when pregnant and haven't moved your body much in 2 months) and breaking down in tears. Lord, this child can now live outside the womb, if needed, if this hole grows too large.  Lord, with You, nothing is impossible. I would have not had the strength to survive this pregnancy without a daily reliance on God.  I know He drew us closer to Him in this time.

Many blessings came from this pregnancy, aside from the actual baby.  I made new friends thanks to a group of church people that brought us meals and helped with cleaning/laundry.  I discovered we could in fact survive on 1 income if we had to, if we gave it to God, if it is His will.  And that also led to giving homeschooling a try.  Looking back, I am intensely grateful for every complication of that pregnancy.

From Day One there have been a few signs, a few health issues, that signal another busy and long road ahead for this child, just as his sisters before him.  About 12 hours after birth he began to have seizure-like episodes of shaking, crying, contorting his body.  We couldn't tell if he was awake or asleep during these.  He spent a day and a night in the NICU and was discharged with the diagnosis of a withdrawal from a medication I was taking during pregnancy.

This night-seizures (I thought they were night terrors, that is what we usually call them) type episodes continued - 5 years later they are still happening. Often.  He will blank out and rub his hands and scream. He will wake up but continue to cry and shake.  He will be asleep and they'd last for half an hour.  Since this is not what seizures look like, and the pediatrician didn't seem concerned when he was about a year, I let it go. In my defense, we have SO SO many other health issues going on.  I've been in survival mode for a good 6 years now.

 Although Dean was born a healthy 6 pounds 11 ounces he would go on to have Failure to Thrive. He did not even make the 1st percentile until he was THREE YEARS OLD! Several visits with a lactation consultant and a nutritionist and GI doctors and endocrinologist, etc. and no answers.  He would throw up blood, poop blood, chew up food and spit it out, etc. What is wrong with this child?! We shoved Pediasures (3 a day) down his throat nonstop, on doctor orders, but he would not grow much at all.  In fact, when he had those night terror episodes he would vomit it all up and choke and gag on it.  Curdled, chunky, smelly Pediasure in my bed almost daily.

  (By the way, this boy is a delightful addition to our family. He's entertaining, loving, and always laughing. So. Much. Fun!)

Desperate for answers the Gastroenterologist opted to put him under and perform an endoscopy and biopsy.  I remember how tough it was to physically (well, and emotionally) bring him to the surgery and be there with him because I was pregnant with Bentlee and had severe "morning sickness."

A few hours after my daughter Bentlee was stillborn I got a call from the GI doctor.  I was still in the delivery room.  The diagnosis was Eosinophilic Esophagitis - bleeding throat.  The next year involved allergy testing (nothing concrete was found, but that's not surprising, as he was only 18 months old), forcing him to drink Pulmocort with maple syrup, and many, many weight checks.

Thanks to our experience with the girls (Julia and Taylor were BOTH diagnosed with Autism and ADHD, etc. at the same time, at ages 6 and 3) we noticed some things of concern in Dean.  I mentioned them to our parent ed teacher in our awesome ECFE toddler class and promptly scheduled an assessment with Help Me Grow - early childhood special ed.  The very same preschool Taylor went to.

He had a diagnosis of multiple developmental delays and significant speech delays.  At only 2 years old the speech class was pretty low-key.  An hour a week, with mom, in a class with a special ed teacher and only a few other children.  He also began private speech through our medical clinic, but our health insurance would not cover the visits - speech therapy (even now, I just checked this week) is only a covered service if born with a physical mouth deformity.

I was SO thrilled, when a couple months into his 4-day-a-week preschool, at almost 4 years old, he actually began to speak! He could say 2 or 3 words together on occasion, but mostly did not speak. This caused him so much frustration, to not be understood, and so many meltdowns and physical anger and aggressiveness.  His speech is hard to understand but at least he was speaking!!

This kid is brilliantly destructive, delightfully entertaining, clever, active, loveable, and frustrating all at once.  He requires CONSTANT supervision - or else! He runs out of school - the teachers have no idea he is in the parking lot, away from church (hiding in a 2nd church building, playing at the park nearby, or all the way across a busy street by the pond!!), and walks right out of our house, despite locked doors.
  (He's 2 1/2 here and found some Magic Shell chocolate sauce - praise the Lord this wasn't something else brown! - while I was downstairs for less than 5 minutes getting laundry going!!)

He always keeps us entertained (check out any post titled "Deanism") and on our toes. And his "squeeze hugs," as he calls them, could melt a snowman's heart.

 Nap time involves removing every item from his drawers (18 months old) and sometimes I'd dine out just to avoid cleaning up THAT mess!

All the other little boys at Papa's softball game played catch or colored quietly.  Not Dean, that wet sand was calling his name.  He was so full of mud his pants fell right off (since he's so skinny).

I love how having a broken arm didn't hinder this 2 year old from bubbles at the park!

(He LOVES being a big brother - and loves to play with Bruce.)

Back to today's eval results: Autism, ADHD, Developmental Delays, Articulation Disorder, Eosinophilic Esophagitis, Failure to Thrive, Bicuspid Aortic Valve Heart Defect, Developmental Coordination Disorder, Fine Motor Delays, Staring Spells, Sensory Processing Disorder, Sensory Seeking Behaviors, Sleep Disturbance.

I'm not surprised to learn he has Autism - I've known for almost a year this was coming.  I've been preparing myself for this. And yet - my heart sinks, I am sad for my child because of the additional struggles he will face.  My mind flashes back 3 years to his first assessment at the Special Ed school.  He'd fall off the spectrum by Kindergarten, he has only a few issues to deal with and after just a bit of work he will be on par with "typical" children.  By the time he hits elementary school he'll no longer need services.  

When you already have two autistic children it doesn't matter how sweet and awesome those kids are, you feel mom guilt.  Well, at least I do.  I've created these children so my DNA is to blame. I can't afford the best services and best schools. And so on.  Having a "typical" child meant is was okay that I had children. God wasn't punishing me. (My thinking has since changed over the years and I have embraced the blessing of special needs children.)

So hearing it out loud from an expert did make my heart drop a bit. They described very clear signs that I had never even noticed.  I don't know any different.  I don't have a clue what normal looks like honestly.  I mean, I had my first child when I was in high school, I didn't have mommy friends for years, so there was never a way to compare my child to others.  I feel a bit bad for missing these very obvious features of ASD - I've always thought of Dean's quirks as fun and endearing.

A thing I am truly grateful for is his cuddles. I know some parents of autistic children are not so fortunate. He loves to snuggle and his "Mommy, I love you SO much." melts my heart. I remember when he could first utter that phrase - I had waited 3 long years for those magic words!

The ADHD surprised me, I thought he was too young for that diagnosis, but the doctors explained they are specially trained to detect and label at this age.  I held things together well - until the Developmental Pediatrician listed the next steps.

Neurology? Why? She explained that those night terrors - the ones I had neglected to be concerned about in the grand scheme of all the other shit going on in our lives? They're very likely seizures. If we can treat them perhaps we can prevent further damage.  It would help explain why Dean has gotten worse - more delays, more struggles.  

I have seen him slip away right before my eyes.  He has these moments where he checks out, stares blankly, rocks back and forth, and flaps his hands oddly.  All 3 of those on the diagnostic team witnessed these episodes.  So I stifle the tears and tell myself that knowledge is power.  If we know that something is medically wrong then we can treat is and prevent further damage.  

  (Dean and Rocky are the best of friends)
She'd like me to have Bruce brought to the neurologist as well, since he has similar seizure-like episodes. They also observed multiple things in Bruce (I've seen one of the doctors MANY times b/c she treats the girls) and would like to have him evaluated soon so that early intervention can be done.  
I'm given a list of appointments to schedule: Dean needs to begin Behavioral Therapy, Occupational Therapy, and Speech Therapy.  He's overdue for an ECHO and check in with the cardiologist. Back to GI doc thanks to a month of bloody stools. Consult with Neurologist. Follow up with Developmental Pediatrician. The entire family is to go in for a genetic consult at Children's. Oh, and (yippee, yippee, yay! Praise the Lord!) the girls can now be scheduled for Social Skills Therapy because we have TEFRA medical assistance! (Been unable to afford but told to put the girls in it for 6 years.) And behavioral therapy for Taylor.

Knowing that we have a plan in place gives me peace. I'm so grateful we now have the financial means to provide the services and help our children need and deserve.  We'll be pretty aggressive with our treatment plan for all the kids and I will have to say no to even more things (social life, cleaning, what is left?!) but I am reminded of Jeremiah 29:11.  God has plans to prosper me. 

I come home to Dean's cars lined up on the floor, sorted first by color and then by size. "Mom, I was waiting for you! Count my cars (he's got like 200) for me!" I smile and sit down. And I count.

 (It's all about the rainbows for Dean.)