Sam, the Pre-Existing Condition

Sam the Anti-PreemieSince this blog launched, I have always referred to Sam as “Sam, the Anti-Preemie”. I am thinking of changing his name to “Sam, the Pre-Existing Condition”.

When Sam decided to make his early entry into the world, my life was turned upside down. I don’t need to go back an chronicle that for you, as I have done that in detail on this site. The one aspect I never touched on was health care. Mostly because I didn’t have to. Even though I had moved from full time work (with benefits) to freelance work (with no benefits), I never had to worry about health care. First, we all moved to my husbands plan. Then, when we got divorced, and my (now) ex-husband got laid off from his job, the kids and I took advantage of Obamacare and signed up through the Covered California health exchange and got pretty good coverage.

I took a Bronze plan. I am in pretty good health, so Bronze was just fine for me.

The kids, on the other hand, they got Platinum. This wasn’t just because I want my kids to have the best, this was because Sam needed the highest level of coverage possible.

Being born at 24 weeks comes with many health issues. Sam is lucky, he only has a few, but they are enough to warrant the best health care possible. Aside from Sam’s well documented and discussed constipation issues which has resulted in four inpatient stays at Children’s Hospital, Sam has tested positive for a blood disorder, has minor vision issues, and is on the Autism Spectrum. With insurance, our co-pays for therapy, doctors visits and hospitalizations runs around $25K a year.

If the ACHA or Trumpcare were to replace Obamacare, our health yearly health costs would be astronomical. You see, should my state decide to waive the requirement to protect pre-existing conditions, the only health care I could get for Sam would be so expensive that I couldn’t afford it or would cover everything except his vision (he had eye surgery while in the NICU), anything related to his heart (he had heart surgery in the NICU), his brain (he had three skull fractures when he was just 2 months actual), his intestinal tract (remember 4 hospitalizations), or any of his autism related therapy.

One politician has claimed that Sam has not lived a clean lifestyle and that is why he has pre-existing conditions. (Well- he didn’t say Sam specifically, but that *anyone* with a pre-existing condition hasn’t lived a clean lifestyle) I would love for him to say that to my face… or to Sam’s for that matter. Almost all of Sam’s medical issues can be tied back to the fact that he was born prematurely. Gastrointestinal issues are a direct result of his early birth. Autism are a direct result from his premature birth. Sam’s ongoing eye care is a direct result of his premature birth. The only things not tied to his birth are the skull fractures (dad fell asleep holding Sam and dropped him on his head) and the blood disorder which is hereditary. None of that is due how Sam has lived his life.

As you think about this health care debate, and why it is so important, think of Sam. He is just one story. I know many others if you want to hear them.

The School District vs. The Anti-Preemie

Sam the Anti-Preemie: At SchoolI have debated writing about my battle with my local school district publicly. What if someone reads this and all my hard work goes down the drain due to someone’s bruised ego. But then I remembered, I don’t shy away from anything on this site. And I have never once worried about what someone else might think. Plus, it’s possible my story and journey could help someone else.

So.. here it goes: The School District vs. The Anti-Preemie.

Sam has had an IEP (individual education plan) in place with The School District since he was 3. The original offer from the district was for Sam to receive OT, Speech and a full day of special ed preschool. I accepted the OT and the Speech, but rejected the classroom placement. The classroom just didn’t feel right for Sam. For one thing, he would have been there 5 days a week – for a full day. That seemed excessive for him. Plus – the entire school site smelled of pee – and that just set alarm bells off in my head.

The OT and Speech services we got were fantastic. Both of his therapists were fantastic, and made amazing progress with Sam. As we neared time for his tri-annual review – and ultimate elementary school placement, I was feeling pretty confident. Both therapists that had worked with Sam for the past 2+ years felt he was an ideal candidate for an inclusion program (general education classroom with an aide and specially trained teacher) – or even possibly just a mainstream placement. Who was I to question them. These two therapists knew Sam. They knew what he was capable of. They knew what he needed.

Based on their confidence, I went and toured every inclusion school near me. Because Sam was doing so well, I even toured the bilingual immersion magnet school that doesn’t offer special education placements. I felt I was prepared for whatever school Sam was offered.

Then the evaluations happened. The psychologist that evaluated Sam was awful. He made no effort to connect with Sam, which resulted in Sam not wanting to perform for him. These two were like opposing magnets. Sam didn’t want anything to do with the psychologist and the psychologist didn’t want to take the extra time to try and reach Sam. I sat in the room for one of the evaluations and was shocked by how poorly things were going. I could see Sam trying and the psychologist just dismissing Sam.

When I finally received my advanced copies of the evaluations the night before the big IEP meeting I was shocked. The Sam that was presented on paper had nothing to do with the Sam in real life. The most gaulling part of the evaluation was where the psychologist wrote that Sam has “no ability for imaginative play. Instead, he just stemmed and made noises when asked to play independently”. Since I was in the room for this particular moment, I knew what was written was total bullshit. Sam had turned the entire table into a kitchen and was cooking, brewing coffee and running his pretend microwave. Not once did the psychologist attempt to understand what Sam was doing so he just chalked it up as stemming.

Based on 6the psychologists evaluation, the offer from OUSD was to place Sam in an SDC (Special Day Class – or isolated classroom for special needs kids). I am sure you can guess what happened next…

I summarily rejected the offer from OUSD, demanded an IEE (independent education evaluation) and placed Sam at the school where he had his general education placement – the dual-language magnet school. I made this choice for a number of reasons:

  1. Sam really wanted to go to school in Spanish
  2. Every SDC classroom I visited felt wrong
  3. I firmly believe that children with special needs benefit from being included in a general education environmnet
  4. As performs to the kids around him. If he was with other kids with special needs, he might regress in all of the progress that he had been making.
  5. After a brief meeting with the distrcit, they offered Sam an inclusion placement – in one of the worst schools in the worst neighborhoods in my city. And that is saying A LOT.

By the time I enrolled Sam in his general education classroom, the district offered Sam support – a whopping 30 minutes a week, plus OT and speech. By this time, I had done enough research and spent enough time talking to DREDF to know I needed to hire a special education attorney.

Sam’s first week at school was amazing and awful. He had a great first day, but the second day was traumatic for both of us. Sam screamed and cried for 2 hours. I was sure I was going to have to bring him home and go back to the district with my tail between my legs. Luckily, between the amazing staff at Sam’s school and his one-of-a-kind-I-wish-I-could-clone-her kindergarten teacher, Sam settled down.

In the weeks that followed, I arranged for Sam’s regular ABA therapist to help with the transition to the classroom. That was a huge success, and after the Thanksgiving break, we had phased that out. Sam’s ABA therapist has also been able to help in the classroom at times when Sam is struggling. Between Sam’s teacher, myself and Sam’s therapist, we have a system going that is allowing Sam to excel and thrive where he is.

While Sam’s teacher and I worked on how to support Sam, the results of the IEE came in – and basically supported everyting I had been saying. Specifically – that Sam belonged in an inclusion classroom or a general education classroom with support and that the first evaluation that was done was crap.

So, with the IEE in hand and two months of school under Sam’s belt, I called an IEP meeting. This time, with my lawyer by my side, the attitude of the district was much nicer and conducive to working with me not against me. Now, the district that was so quick to tell me my son needed to be in an SDC was saying he seemed to be doing so well, that they didn’t think even offering Sam an inclusion spot was right anymore. Instead, they upped his support to 30 minutes a day + an hour a month of supervision from a school psychologist. While I still do not think this is enough, it is better than where we started.

I am still supplementing the support with visits from Sam’s ABA therapist. If all goes well, Sam will be able to stay at his school (which he LOVES) through 8th grade. Of course, things can change. But for now I would say the score in my fight is:
School District: 0
Anti-Preemie: 1

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.

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.