Six years and counting

My sweet boy.

It has been a while since I wrote just to you. Life with you is never dull – and I am so thankful for that. There are a few things I could do without- lets never have to be hospitalized for an impacted bowel again – ok? The reality is, you have overcome so much, but more than that, you have just become such a lovely and funny kid.

The leap from five to six is huge. Aside from all the growing and changing you did, things in your life really changed too. Just a small snapshot of some of the bigger things that happened in the past year:

  1. Your 5th year of life was kicked of with your very own fan for your room. It may seem like a silly gift when you look back on it years later, but you love this fan.
    Sam the Anti-Preemie: Year in review
  2. You spent 3 nights in the hospital in December for an impacted bowel. It sucked. It really sucked. On the flip side, since that hospitalization, your bowel issues have gone away. You are off all medications and herbs that you have been on since you were nine months old. Its like being in the hospital this time cured you. Plus, it was on this trip to the hospital that you got Layla and Laura… and earned the nickname “Dr. Sam”.
    Sam the Anti-Preemie: Year in review
  3. You got to spend Christmas in Tahoe – with a ton of real snow. With that came a reinforcement of your love of sledding.
  4. You were fired by your gastroenterologist. This was huge!
  5. You underwent your triannual IEP review – which led to a nine month fight for your mom with the Oakland Unified School District. I will spare you the details – but just know your mom fought for you and fought for you… and won. Nobody but nobody was putting you in an isolated special needs classroom.
  6. You got to spend time at Lake Tahoe, playing with your sister and hanging out in the lake.
    Sam The Anti-Preemie: Year in review
  7. You mastered reading – before starting kindergarten. Oh wait, you mastered reading in TWO languages before starting kindergarten.
    Sam the Anti-Preemie: Year in review
  8. You graduated from preschool!
    Sam the Anti-Preemie: Year in review
  9. You started Kindergarten (at a spanish immersion school) and celebrated your first day with frozen yogurt. Did I mnention you started Kindergarten in a mainstream classroom. Without an aide – and kicked butt?! No… cause you did.
    Sam the Anti-Preemie: Year in review
  10. More than anything else – you made my life more fun just by being the big silly, happy, difficult, stubborn, funny, cute, loving, annoying (put that one in for your sister), all around amazing kid you are.
    Sam the Anti-Preemie: Year in review

Keep being you baby – because you are amazing.

“As Needed”

Sam the Anti-Preemie: As Needed

There is one topic I have written about on this site a lot: poop or the lack thereof.

From the day Sam was born the one thing he wasn’t so good at was pooping. We have tried everything: Miralax, acupuncture, herbs, Senna, a gluten free diet, a dairy free diet and every combination of the above – sometimes all at once. We have had Sam’s intestinal track studied from above and below. We went to a physical therapist who specializes in chronic constipation. We have even had a biopsy done to check for an underlying medical issue to his chronic constipation. Every bathroom in my house has glycerine suppositories in it. As recent as December of this year, we spent three nights in the hospital for an impacted bowel.

And then, suddenly, something shifted. After the hospitalization in December, Sam started pooping. Daily. After a solid month of daily poops, I started to slowly dial back on the herbs and the Senna until Sam was only getting Miralax. And the poop kept coming. Next, we started to cut the Miralax down bit by bit. And the poop kept coming.

It’s been seven months now of daily or every other day poops – and only a small amount of Miralax.

When the appointment reminder popped up that Sam’s three-month check-in at the gastroenterology clinic was upon us, I reached out to his doctor and told her how we were doing. I asked if she needed to see us. Her response was: “I am happy to see Sam on an as needed basis from this point on”.

That’s right. Sam has been downgraded to “as needed”. The boy who almost needed surgery to clear out his impacted bowel in December is now cleared to only see his GI doc if needed.

Over 5 years of obsessing over poop. Worrying about poop. Wondering what can be done to help Sam poop.

He has it figured out. We will see his GI doctor when and if he needs to.

Its Been 4 Months since Sam’s IEP

Want to know what overwhelmed looks like… well… it looks like me.  Since Sam’s IEP, I have done what I do best – educate myself.  I have read the full IDEA statute.  I have learned terms like LRE, FAPE, ADR, Prior Written Notice, and, well, IDEA.  I have become a minor expert in Special Education Rights.

What this minor expert can tell you is this system is BROKEN.  Totally, completely, absolutely, broken.  I am at a loss for words at broken this system is.  We as parents to kids with special needs need are forced into horrible positions of fighting for something for our kids which should be so simple – an appropriate public education.

As you know, Sam’s IEP did not go well. The results were off and clearly done by people that don’t know Sam. Since the evaluation was completed in January, Sam has mastered reading (in two languages), figured out how to hold a pen in such a way that allows him to write, and has generally just grown in his social/emotional world. This kid is thriving in his mainstream preschool. He has friends. He goes on playdates. He is starting to understand his actions can have consequences. Taking him from a mainstream environment and placing him in an isolated classroom would be a huge setback for Sam.

But hey – what do I know, I am just his parent.

So, here I am, almost 2 months from the start of kindergarten and I have no idea where Sam will go to school. I have tried to be reasonable. I have tried to negotiate. I have hit a brick wall.

So now, we are at the point of no return. Do I accept a placement I know is wrong for Sam or do I lawyer up and fight the good fight or do I throw in the towel and place Sam in a private school. No clue – but in the meantime, I write angry emails, read up on the laws, and plan all the possible variations of Sam’s future.

Blindsided by an IEP

I knew it was coming.

Every three years, children with an IEP in the Oakland Unified School District have a major review of eligibility. Besides, Sam will be entering kindergarten (holy shit!) in the fall, and I figured the IEP they did for Sam when he was three would need to be updated.

I started laying the groundwork in September. I talked with his school district provided speech therapist and occupational therapist weekly about where they thought Sam would be placed. They both confidently told me that Sam should be placed in the inclusion program. I heard this from them over and over. Week after week.

As the open enrollment period neared, I started touring schools. I must have visited at least nine schools. I wanted to make sure I really understood what each of the nearby inclusion schools looked like. I even looked at a few schools that didn’t have an inclusion program – as Sam was doing so well.

We started the hours and hours of testing come January. Three testing sessions with the OT. Three testing sessions with the speech therapist – well, the English speech therapist. Three testing sessions with the learning specialist. Two sessions with the school psychologist. And, just because I am a bit of a glutton, one long session with the Spanish speech therapist. All in all – we are talking well over 7 hours of testing… of a five year old. This doesn’t even include all the classroom observation time.

Through all of this, I was sure that Sam would be placed in the inclusion classroom.

I filled out his options forms as if this was a foregone conclusion.

I walked into his IEP meeting this morning unconcerned and confident of the result.

And then – BAM! Sam was not offered the inclusion program. Instead, he was offered a “special day class” for “mild to moderate” kids. He was not going to be mainstreamed. He was not going to be placed in a neighborhood school.

I am still a bit in shock from all of this – and trying to figure out what my next move is. I am not sure I agree with the assessment, but want to make sure whatever decision I make is the right one for Sam. I would hate to fight for him to be in the inclusion program if he really isn’t ready – just as much as I would hate to accept his placement in the special classroom if he is at a higher level.

I knew advocating for Sam was going to be difficult at times. I just didn’t think this was going to be part of it!

Sharing Insights On My 5th World Prematurity Day As a Preemie Parent

I “celebrated” my first World Prematurity Day in the NICU. Sam was just two months old actual and was on his second full day of being off oxygen support.

A lot has changed since that day, and I thought I would take a moment and reflect back on the five main things I have learned in the past five years.

The Trauma is Real

The NICU is terrifying. It doesn’t matter if you are in there for one day or for 95 days, like Sam and I were. Any amount of time in the NICU is too much. The beeps, the alarms, the uncertainty, the fear… they are all there and they are all all consuming. Leaving the NICU unscathed is just not possible – for you, your preemie or those in your immediate inner circle.

It is important to acknowledge the trauma. You all suffered in one way or another. I came out of my experience with a nice case of PTSD. Sam came out of his experience with a health fear of doctors and hospitals. Irene came out of this experience convinced that a health crisis was always on the horizon. Even my marriage suffered from the trauma – and crumbled under it.

Be strong enough to know the trauma is real.

The Fear Never Ends (preemie parent or not)

Life inside the NICU is filled with fear. Will my preemie ever be strong enough to go home? Will his bladder start working? Will he lose his eyesight? Is his stomach filled with gas for has he developed NEC? The one thing I realized is, at least in the NICU that fear is in the safety of the hospital. The NICU is a place filled with amazing people who are there to make sure that even if the worst is happening, your preemie is safe.

Once you are discharged, you are on your own! Yes, you will still have doctors and nurses and specialists in your life, but they are not there with you 24/7. It makes each cough that much more terrifying – because you are alone.

And once you get past the early stages of terror of not knowing if your baby is suffering a Brady or an Apnea event… there is all the rest of the fear. In my case, I could not believe that I was going to walk away from having a twenty-four weeker with just slight nearsightedness and some digestion issues. I was convinced everything was more than it was. 90% of the time I was wrong. For the times I was right, it was terrifying. We went through skull fractures, five days at children’s for RSV, and an Autism Diagnosis.

Your child starts its life bathed in fear – and honestly, that fear never goes away.

The Resilience Of Your Child Will Amaze You – Every Day

OK – so you have suffered a trauma and you are bathed in fear all the time. That’s the bad news. The good news if these preemies are amazing. They are the most resilient children around. Hell – these kids have survived more than most of us before they were even supposed to have been born. With that in their past, how can they be anything but inspiring.

I know I look at Sam on a daily basis and wonder. I wonder how he can be so happy. How he can be so healthy. How he can be so tall. Sam is the picture of resilience and his amazes and inspires me every day.

Life Will Never Be The Same

This is so true. I mean, how could you go through that experience and not have your life completely change. The NICU is an earth shattering experience. I know medical terms I never wanted to know. I have friends that have enough medical equipment in their houses to start a small clinic. Hand sanitizer is in every room of my house, in my purse, in my car, in my parents house…

Yes – I have suffered. Yes – I am constantly afraid. Yes – I am a much better person than I was before I had Sam. My life has changed. I have changed. I am so grateful for these changes.

You Will Change In Ways You Didn’t Think Possible

All of these changes I have made, personally, emotionally and professionally have been wonderful. I never felt I was a patient person before Sam. Now, I have a patience even I am in awe of. I never saw myself as a stay at home mom. Well, I work – but I work from home, allowing me to be present for my kids at a moments notice. I never envisioned myself as a single parent or a divorcee – yet here I am and I am OK with it.

The bottom line is, my life was altered in many ways on September 16 2010 and I am OK with it.

So, remember, while the NICU experience is awful and overwhelming, you can still come out the other side. Of course, I would love nothing more than to see the number of premature births continue to drop. When Sam was born it was 1 and 8 births worldwide were premature. Today that number is now 1 in 10 births.