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

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!

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?

Vaccinations, Autism and the Immunocompromised

Dangerous territory… I know. I may offend some of you. I may not. But I feel I have to put this out there.

I am approaching this topic as the parent to a vaccinated child who has autism and a weaker immune system than some. Before you go “Aha! Vaccinated and Autistic.. Aha!”, let me be clear.

Yes, my son is Autistic. Did his vaccinations cause his autism? HELL NO.

You may ask, “How can you be sure?”. Simple.

If you have read this blog you know that my son was born premature. Like really really premature. Like 16 weeks premature (for those doing math, that is 24 weeks gestational age or almost 4 months early). Brain development kicks into high gear around the 27th week. The majority of ridges and neuro-connectors don’t really start to form until after the 30th week. That means the key brain development for my son happened in an unnatural environment. Is it really any wonder that a connector or two might not have formed correctly? I don’t think so. The fact that my son JUST has autism is a miracle.

Being a part of the preemie community means I know a lot of children with compromised immune systems. These are kids that don’t just get a cold, these are kids that end up hospitalized needing oxygen support more often than not. My son is in the same boat. He either gets really sick or not sick at all. There is really no middle ground. And, in reality, I am luckier than many of the preemie parents I know. Sam has only had to be hospitalized once for oxygen support. Many of the kids I know have been hospitalized dozens of times.

Now, when you decide not to vaccinate your child, you are endangering the lives of these innocent immunocompromised kids. Your fear of your child developing autism could end up causing someone else’s child to be hospitalized or worse. We allow schools to ban nut products because it could kill a child with an allergy, but we don’t extend that same protection to a child with a compromised immune system. Your unvaccinated child may be as dangerous as a peanut butter and jelly sandwich.

Chew on that for just a moment.

As a side note, having a child with autism isn’t all wonderful, but it also is not the end of the world. There are many positives that come from raising a child on the spectrum.

Advantages of Autism

Sam the Anti-Preemie: Happy as a clamEveryone always focuses on the negatives of an autism diagnosis. Myself included. So today I figure I will focus on the positives of an autism diagnosis.

    1. Autism is not a fatal diagnosis. Yes it does mean a very difficult road ahead but at the end of that difficult road is life. My child will not die from autism.
    2. Autism is not a one-size-fits-all. In the case of Sam his autism is most definitely his own. He is a loving, connected, funny, cute, huggable, goofy, artistic, music loving kid – and so much more. What he is not is withdrawn, stuck in a corner unable to speak, not showing any love or affection for anyone around him. I know I am lucky in this because my son will tell me he loves me and my son will hug me. I know for many parents of a child with autism that is not the case.
    3. Autism teaches adults things they didn’t know was possible. For me, caring for my son has taught me that human beings have a capacity for patience I didn’t even know was possible. Without Sam I do not think I would have the patience for everything in my life that I have today.
    4. Autism brings interesting people into your lives. We are extremely lucky that the therapists Sam has are as amazing as they are. Without them, Sam would not be doing as well as he is doing- and I would not be as good of a parent to Sam as I am.
    5. Autism has allowed Sam’s sister to shine even brigther. I always knew Irene was amazing and wise beyond her years, but watching her with her little brother is a beautiful thing. She knows he is different, she knows he is not a “normal” little brother, and aside from a rare big sister jealousy moment, she just doesn’t care. God help the person that teases Sam for being different. They will discover just how amazing his big sister is right quick.
    6. Autism has brought me access to Sam that most parents never have. This may be my favorite part of Sam’s autism. Because of his therapist attending preschool with him I get pictures and videos throughout the day of sampling, interacting, laughing, and succeeding along with the neurotypical kids. Who could find a negative in Autism when I get pictures and videos like this texted to me:

    • Turkey Hat
    • Sam and Emma playing
    • Sam in his farmer vest
    • Turkey Hat
    • Super Sam waiting for an important call
    • Sam - being Sam
    • Sam and his amazing ABA therpaist
    • Sam with Emma - on the slides
    • Sam and Evora in the swings

    and

    Sam at Dance Class

    and

    Sam and Emma play catch

    These are just six ways autism has bettered my life. I can’t wait to hone in on more ways!