Stop treating him like he is different

Last night, in a discussion with a friend, I was told I needed to stop treating Sam like he is different. 

Now, I can’t stop thinking about this.

Sam has been different since the day he was born:

  • He was only 24 weeks at birth, but was considered large for his “age”.
  • He was off the vent in 3 days and never looked back.
  • He never had a brain bleed.
  • He was out of the NICU before his due date. 
  • His lungs have always been strong.
  • He has only (yes – only) had two specialists… But never overlapping.
  • He is autistic, but in a unique and different way.
  • He is fully bilingual, but shows a dominance in Spanish even though he will no longer let me speak to him in Spanish. 

In other words, I have known Sam was different from Day 1 and I have treated him as such. 

But now, as Sam is preparing to turn five, I need to face the idea that treating Sam as different is no longer what is best for him. Now, treating him as different might be holding him back. 

I want Sam to learn to swim, but have not put him in lessons out of fear that the teacher may not be trained to teach a kid with Autism. 

I want Sam to participate in team sports – like soccer or baseball. Again, I have not signed him up because he is different. 

Hell, I want Sam to have playdates, but have never arranged one because I am scared since Sam is different. 

I think in all instances I am afraid Sam will fail or not be accepted so I am standing in the way and hiding behind the fact that Sam is different. 

Can this be really as easy as my friend’s advice and I just need to stop treating Sam like he is different?  

Is that even something I will be able to do?  

And… How do I do that?

What’s One More Therapist

When Sam graduated from the NICU, we were lucky. Aside from our pediatrician, Sam only had one specialist, a retinoligist

That didn’t last long.

Pretty soon we added in the developmental playgroup (which came with an OT and a PT), the high risk infant follow up clinic, a weekly visiting nurse, and monthly regional center visits.

By his first birthday, Sam had a gastroenterologist, a different eye doctor, and an occupational therapist.

When birthday number two rolled around, Sam was officially placed on the autism spectrum, which came with a whole new host of specialists and appointments. First there was the speech therapist. Then the FloorTime specialist. She was followed by ABA therapy. And for good measure, I added in weekly acupuncture sessions to help with Sam’s chronic constipation.

For those wondering, this is what Sam’s weekly schedule looks like:
Monday:
8:45-12:45 Preschool + ABA therapist
Tuesday:
9:30-12:30: ABA Therapy
Wednesday:
8:00-8:30: OT at the local elementary school
8:30-9:00: Speech therapy at the local elementary school
9:30-12:30: ABA Therapy
6:30-7:00: Acupuncture
Thursday:
8:45-12:45: Preschool + ABA Therapist
Friday:
8:45-12:45: Preschool + ABA Therapist
2:30-3:30: Speech Therapy
Saturday
1:30-4:30: ABA Therpay

And on Sunday we rest.

So, with a schedule like that, what is a mom to do? I know! Let’s add in Physical Therapy! And for good measure, lets make sure that this physical therapist is about 35 miles from home. (For those in the Bay Area, that means driving through the tunnel – so this can be quite a long drive.)

Crazy right?! Possibly. However, this is a Physical Therapist that specializes in chronic poop issues. Sam is the poster child for chronic poop issues (just search the word Poop or Constipation on this site if you don’t believe me). If there is anything I am willing to dedicate more time to, it’s solving Sam’s poop issues.

So, now, you can add
Tuesday:
1:00-1:30: Physical Therapy (with driving time).

Sam the Anti-Preemie with his dogs

No matter how busy he is, Sam always has time for dogs.

Can you make something with me?

Sam The Anti-Preemie playing with irene
This morning was magical. No seriously. Magical.

I was in the kitchen getting breakfast made when I first hear it. It was faint and in the distance. Then it got louder.

Giggling. Lots of giggling. And not just one voice, but two. The giggling was then followed by a conversation. Again, not a one voice conversation, but two voices.

And it hit me. The kids were playing.

Together.

To many, this is a normal morning. But in my house, this was not something that happened often.

I tried not to interrupt. But I couldn’t manage to sneak up on them. Sam saw me.

“Go away mommy. I’m playing with sissy”

I almost cried with joy at his dismissal. He didn’t want me to break up the fun.

As soon as breakfast was over, Sam ran over to his sister, touched her arm, looked right into her eyes and said “Can you make something with me?”

And like that, the two kids took off downstairs to play with Sam’s pretend kitchen.

Magical.

Potty Training with Three Strikes Against You

Sam the Anti-Preemie: Potty Training
Potty training is something many parents fear. Hundreds, if not thousands, of books are dedicated to helping ease the transition from diaper to potty. There are even “How To” videos on the subject. There are also the antidotal horror stories people are more than willing to share with you when they learn you are potty training.

I laughed at all of this when my daughter potty trained in less than an hour and within one week was fully trained at night. Little did I know. She was an outlier, a rarity, a unicorn in the world of potty training.

I am now deep (we are talking MONTHS) into potty training Sam with only mild success. He is fully trained when it comes to pee. But, poop. OH. MY. GOD.

Yes, there are three major factors working against Sam:

  1. He is a boy. Apparently that matters. Boys are harder to potty train than girls. I couldn’t agree more.
  2. He is autistic. Not having all your synapses from brain to body functioning in perfect, neurotypical rhythm apparently matters. I couldn’t agree more.
  3. Sam has major issues with constipation. As anyone who has read this blog know, poop is a major issue with Sam. Trying to potty train a boy who is either totally constipated or basically peeing out of his butt is hard. Apparently bowels in good working order matters. I couldn’t agree more.

Of course, I know he can poop on the potty. He has done little itty bitty poops for me… and huge normal poops for his nanny.

(Yes – I am very bitter.)

But seriously, I am at the end of my rope here. There are only so many pairs of underwear I can wash every day. I have tried everything:
A Schedule: Every hour Sam is placed on the potty for 5 minutes. Trust me – that boy has every opportunity to poop a kid could want.
Pure Bribery: For each pair of clean underwear, he gets a chocolate chip. For small poops in the potty he gets 2 chocolate chips. For every big poop in the potty, he gets 6 chocolate chips.
Threats: Sam is terrified of getting a suppository. We have told him if he poops in his underwear we are going to give him a suppository. All this has done is terrify him into shitting his pants.
Emotional Blackmail: We tell Sam he has made us sad by pooping in his underwear. Sam hates people to be sad. Of course, he doesn’t hate it enough to stop pooping his pants, just enough to scream “I want you to be happy”.
Excessive Celebration: No matter how small the poop may be, we jump and cheer and high five like Sam has had the biggest poop any of us had ever seen. Even the two year old at his nanny share gets in on the action, offering high fives and congratulatory hugs.

So, here I am, at wits end with no idea what to try next. So, dear readers, lets hear all that advice you are just dying to share. How the hell can I potty train a boy with three major strikes against him?

We Survived Our Extended Hospitalization

The idea was simple enough. Well, as simple as a hospitalization and surgical procedure on a 4 year old could be.

But this is Sam. And he has never – ever – done anything simple.

After speaking with the hospital admissions team, we decided to admit Sam at 11:30 am. This would allow him a few hours to hang out with his friends at preschool and participate in his favorite activity… music class.

My mom and I picked him up at preschool, and, before we left, Sam took my mom on a tour of his classroom and playground. It was fun to watch Sam show my mom his cubby and point out some of his friends.

After that, the three of us headed out to check in for our overnight stay at Children’s Hospital.

Check-in seemed simple enough… until the nurse that came to take us to our room looked me square in the eyes and said “who told you to come to the hospital today”. The incredulity in her voice when she asked this is lost in type – but I can assure you the nurse is lucky I didn’t sock her one! I held it together, and sweetly told her that we were instructed to come in by the surgeon. That seemed to satisfy her, so she escorted us to our room.

By now, it was 12:15 and Sam was starting to get hungry. Sadly, little man was restricted to clear liquids only and got his first taste of jello. One bite in and Sam made it clear what he thought of wiggly orange jello: “I don’t like it”. Before we could move to the popsicles, Sam’s nurse arrived and told me I needed to get Sam into a hospital gown and then they were going to put in an NG (nasal gastric) tube.

The hospital gown was easy. The NG tube, on the other hand, reduced me to tears. Sam screamed and cried through the entire insertion. My mom struggled to pin one leg down, while I held the other leg and laid across his chest to keep him still. Sam was so upset and agitated, that before the nurse could even get the tape placed, he managed to get an arm free and pulled the tube out.

By now, my dad had arrived at the hospital, so two nurses, my mom, my dad and I now all worked together to hold Sam down and get the second tube in. The nurse put three layers of tape on the tube and we all let go. He immediately started to try and pull the tape off his face, so the nurse had to put Sam in “NoNo’s”. NoNo’s are plastic arm covers that go from your wrist to your shoulder, retraining your movement and ability to yank things like NG tubes out.

The only way we were able to calm Sam down was to find a red (not an orange) popsicle and give Sam unrestricted access to as many music videos as he might want.

Within an hour of the NG tube torture, another nurse arrived to place Sam’s IV. Sensing the IV might be traumatic for Sam (and me!), the nurse had us go to a treatment room where she used her magical powers to get the IV placed in one shot without Sam even noticing!

All of the traumites out of the way, all that was left was to start to GoLightly and get the colon cleaning underway. (I am totally glossing over the mixup in the hospital orders where they didn’t have all of the procedures in the computer and I refused to allow anyone to touch Sam until we could get things cleared up).

The GoLightly was started by 6 pm. The colonoscopy, endoscopy and biopsy was supposed to happen at 9 am the next day. They figured Sam should be cleared out by then.

By 8 pm, my mom and dad left, leaving me and Sam to snuggle in the small hospital bed. At 9, Sam asked to go pee. I stood him up, he look one look at me and projectile vomited ALL of the GoLightly that had been pumped into his stomach. Apparently, a lot of GoLightly (and a few red popsicles) were in his tummy because the amount of liquid on the floor was impressive.

Three nurses and an orderly later, the room was clean, the sheets were changed, and Sam was sound asleep in my arms. The zofran and sedative they gave him also helped.

At 6 am, Sam had his first tiny poop.

At 8 am, the procedure had been canceled and pushed out a day.

At 8:01 am, I realized that I would be in the hospital for a second night with Sam.

At 8:10 am, I stopped wallowing because a friend arrived with a latte.

The rest of the day, Sam alternated between cute and good natured or angry and violent. The NoNo’s on his arms served two purposes: keep him from yanking his NG tube out and weaponizing his arms. When Sam was angry, he would windmill on me, hitting and screaming that he wanted food. I let him do this, because… well, how could I not.

By 8 pm, Sam had pooped lots, but he was showing no signs of being cleaned out.

By this time, I had not left Sam’s side in over 24 hours. My mom (and Sam’s nurse) insisted that I take a break and eat dinner in the family room. He was asleep at this point, so I was OK leaving him. Besides, the nurse promised she would stay in the room until I got back.

Mom managed to keep me away for a whole 20 minutes.

When I got back to Sam’s room, I could smell we needed to change his diaper. I told mom to run- that she had put in enough time at the hospital. Once she was gone, I pulled the blanket back on my sleeping angel and was horrified to find Sam was in a puddle of liquid poop that stretched from his knees to his shoulders.

The nurse and I spent the next 5 minutes trying to figure out how we were going to change the bedding and clean Sam up!

The rest of the night, I changed Sam’s diaper every 20 minutes… and even with this, his bedding had to be changed about 5 times.

Wednesday rolled around, and I had managed to get a total of 3 hours of sleep over the past two nights. Keeping Sam entertained was exhausting, and whenever I stopped performing, he would totally meltdown and start hitting. When I had nothing left to give, my parents would step in and take over the entertain Sam job.

(My parents were amazing through this whole thing. They were at the hospital with me all day or entertaining Irene.)

Finally, at 12 pm on Wednesday, it was time for the procedure. I carried Sam down to the pre-op waiting area where I continued to act like a performing monkey, doing whatever I could to keep Sam happy.

While we were waiting, I caught the eye of a familiar looking doctor who was walking around by the nurses station. Right away I realized it was the cardiac surgeon who had operated on Sam when he was just a little over one month old.  Apparently the surgeon recognized us as well and came out to say hi.

For those that believe in these things… I took this as a good omen.

Not long after our visit with Dr. Reinhartz, Sam was sedated and whisked away for the procedure.

In a little over an hour, the Gastrointerologist was walking us through pictures of Sam’s now pristine colon.  She told me that on visual inspection everything looked normal.  No inflammation, no polyps, no abnormal bumps and lumps.  She told me I could go back with her and be with Sam as he woke up.

It took longer for Sam to fully wake up than it did for the entire procedure.  Once he was awake, we returned to Sam’s room and waited for discharge.  While we waited, Sam got to order his first meal in almost 70 hours: bean and cheese burrito, mac n cheese, goldfish crackers, chocolate pudding, apple sauce and cake.  I learned my lesson about reading a menu to a starving 4 year old.

By 8 pm on Wednesday, we were finally home.  Sam sound asleep in his own bed, Irene tucked into hers, and I happily in mine.

A few days later we got the biopsy results… everything came back normal.  YEAH!  and SHIT.  Now what?!  Sam and I go to the gastrointerology clinic tomorrow to ask just that.

  • The indignity of a hospital gown

    The indignity of a hospital gown

    The indignity of a hospital gown

  • Wearing Yayo's shoes

    Wearing Yayo's shoes

    Wearing Yayo's shoes

  • Muppets always make Sam happy

    Muppets always make Sam happy

    Muppets always make Sam happy

  • Uncomfortable, hungry and sad

    Uncomfortable, hungry and sad

    Uncomfortable, hungry and sad

  • Still waking up from anesthesia

    Still waking up from anesthesia

    Still waking up from anesthesia

  • First meal in 72 hours

    First meal in 72 hours

    First meal in 72 hours