Updated: 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.

UPDATE: A few weeks back my Congresswoman asked for stories, I sent mine in and she was so moved by it, she had me come in and tell my story on camera. Later in the week, Congresswoman Lee took my story to the floor of the House of Representatives. For those that have not seen the video – you can watch it here.

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.