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.

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.

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.

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

      Turkey Hat

    • Sam and Emma playing

      Sam and Emma playing

    • Sam in his farmer vest

      Sam in his farmer vest

    • Turkey Hat

      Turkey Hat

    • Super Sam waiting for an important call

      Super Sam waiting for an important call

    • Sam - being Sam

      Sam - being Sam

    • Sam and his amazing ABA therpaist

      Sam and his amazing ABA therpaist

    • Sam with Emma - on the slides

      Sam with Emma - on the slides

    • Sam and Evora in the swings

      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!

Acceptance

Tomorrow is Sam’s first ever birthday party… with friends… from his school. I was hesitant to throw him a party, unsure if other kids would come. I was nervous that if I invited his class, they would all find excuses not to attend the party. Sam’s therapist pushed me. She told me Sam was ready for a party. She told me Sam has friends.

So, I sucked up my fear and sent out the evite. Then I sat back and waited.

I clicked on the evite daily, just to see if anyone had RSVP’d. After a few days, responses starting coming in.

“No – we have other plans that day”
“No – we are out of town”
“Maybe – we will see if we can swing by”

One after the other the No’s came in. Then a Yes. But that was quickly changed to a no. Of the 18 kids from pre-school invited, only 3 said yes. And two will only be able to be there for an hour at most.

I know that Sam will not know the difference. He will just be happy that his buddy Emma is there. But I know. And it makes me sad.

Are people saying no because of Sam’s autism or are they saying no because they are all really that busy?

I don’t know the answer, the only thing I do know is I hope I get all my tears out tonight so I can act like everything is OK tomorrow for Sam at his birthday party that nobody is coming to.

The Chicken’s Way Out

Did anyone notice?

That is what I kept asking myself after hitting publish on my last post. The opening line was so obvious:

After 7 months of single parenting,

But, since I hadn’t told a lot of people, I wasn’t sure if anyone would really notice… or realize what I had just said. This was something I had been holding back from most people. Only a select few knew what was happening. Hell, my own grandfather didn’t even know until a few weeks ago.

But there it was. Published for all to see.

I was now a statistic. A public statistic. Like many marriages, mine was on the rocks. We had suffrered through much in our ten years of marriage – with the last five being complete killers.

When Sam was still in the NICU, I heard someone say that the percentage of preemie marriages that fail was astronomical.

When Sam was placed on the Autism Spectrum, I heard again about how hard a special needs kid is on a marriage.

Well… Here I am. Separated from my husband. Single parenting the best I can. Living the life of a statistic.

Now, before anyone gets the wrong idea, this is not because of Sam.

Not by a long shot.

The problems in my marriage were there before Sam was born. The stress of Sam’s birth and special needs haven’t help, but they are not the cause of split. Life is the cause of our split.

At least now it is out there. The truth is out there, and I finally feel like I can get back to writing, and telling my story without holding back. It has been so hard these past seven months to write as I felt disingenuous. For anyone that has been reading this blog since it started knows, the absolute last thing I can be accused of is holding back and not being totally honest. Sometimes, I have been TOO honest and raw. Now that I took the chicken’s way out and copped to my single parenting status, I can finally go back to writing the way I like.

Raw, honest, open and uncensored.

I will start now. My husband and I separated in January and I am terrified about what is to come, but honestly excited about the possibilities.

Of Lice and Poop

After 7 months of single parenting, I really thought I had a handle on things.

We were a well-oiled machine. We were eating better. There was less fighting in the house. We were on-time to everything. Kids were happy. I was happy.

Then, in one evening, my façade came crashing down in a pile of poop and lice.

It wasn’t until my daughter announced her head itched while Sam was in a corner screaming while trying to poop that I realized I was outnumbered and on my own.

Both kids needed me and they both needed me at the exact same time.

And don’t get me started on the pets. Because it was clear they were in need of attention as well.

What was a single mom to do?

Cry. Prioritize.

I explained to Irene that I had to help with Sam’s pooping issues first, and then I would turn my attention to her. She didn’t complain because it gave her time to read.

So, my confidence in my super powers restored, I set about to getting a suppository in Sam.

Right – I was the only adult in the house and getting a suppository in Sam is a two-person job.

Well shit.

After 20 minutes of screaming and crying (some of it Sam’s) and a near miss with a broken nose (all mine), I finally managed to use my Twister skills and pinned Sam down long enough to get the suppository in. Then it was just a matter of waiting for him to pass the largest brick of poop I had ever seen. (I will spare you the screaming and crying that took place between the suppository and the poop – but needless to say, I am still shocked that one of the neighbors didn’t call child protective services.)

After rocking Sam to sleep, I turned my attention to Irene. The shampooing of her hair with Nix was easy. The almost two hours it took to comb her hair with the little lice comb was another story.  Like me, Irene is blessed with a thick head of hair… and according to the Nix box, each and every stranded needed to be combed carefully.

Again, Irene didn’t really complain as she was allowed to watch TV the entire time I combed little bugs out of her hair.

With Irene’s treatment done, I stripped her bed down, gathered her favorite stuffies and headed to the laundry room to start washing all her linens.

It was at that moment one of the cats followed me in, and while looking directly at me, pooped right on the laundry room carpet.

It was 10 pm and there was not enough beer in the house.

EPILOGUE
After finding a beer or two, I did a lice treatment on my own hair to be safe. Then washed all of my linens. The next day Sam was as happy as could be and Irene seemed to be itchy head free… until today (a week later). This time, we went to a professional place (SO worth the money). Now I say with confidence that neither Irene nor I have lice… and a good inspection of Sam this evening, and I am declaring him lice free as well.

Sam the Anti-Preemie's sister after lice removal

Irene after the de-lousing

Sam the Anti-Preemie with a fluffy fro

What curly blond hair looks like after a lice check

Potty Training the Autistic Child

So, you think it is time to potty train your son.  Great!  But, before we start, I have to ask, why are you sure he is ready?

Here are a few typical answers you might get:
“Well- he keeps hiding in a corner when he poops, and every time he pees, he grabs at his diaper.”
“He asked is he could use the potty.””He told me that he needed to go pee… so I think he is ready.”

I am sure there are more… but those are the ones that come to mind at the moment.

Well, I hate to burst your bubble, but when it comes to children with Autism, apparently none of those answers are right.  Instead, the answer is simple… “Because I have decided it is time.”

That’s right – when your child is Autistic, you let them know when they are ready to potty train, otherwise you could be waiting a looooooonnnnggg time for them to be ready.

From what Sam’s therapists tell me, one of the aspects of Autism is a weaker mind/body connection.  Many children on the spectrum don’t know that they are in control of when the pee or poo.  So, when you are ready to potty train them, you have to help them establish that connection.

What that means is you suddenly take them out of diapers, throw them into underwear and spend day after day trapped in or near your bathroom playing games and putting your child on the potty.

That pretty much sums up the past week around my house.  Sam loves his underwear.  He really really loves it.  At night, when he gets to wear a diaper, he cries because he wants his underwear on… so he is now sleeping with underwear over his diaper.

The first day of intensive potty training was a disaster.  Sam would sit on the potty no problem… he just would not do anything.  Instead, after 15 min of sitting on the potty Sam, within seconds of getting off, Sam would pee all over the floor.  15 times.

Day two was a little better.  He only peed on the floor 8 times.

On day 3, I got a good introduction to Sam’s stubborn streak.  We decided that as long as he was happy we would just let him continue to sit on the potty… for 50 minutes.  And even sitting there that long… nothing.  Five minutes after getting off the potty, Sam peed on the floor.

Thursday brought mild success.  After thirty minutes on the potty he finally went a little.  The celebration was loud and filled with chocolate.  Sadly, it was the only success for the day.

Friday saw two successes – and rewards of cookies and chocolate chips.  Today… today was even better.  After not pooping for 5 days, Sam pooped a little… on the potty.  That got him a small bowl of ice cream.

Needless to say, potty training Sam is NOTHING like potty training Irene.  With her, we told her she was done with diapers, she said OK… and she was done with diapers.

I do take the small successes this week in stride.  We started the week without Sam even knowing that he was the one that made the diaper wet.  Now, Sam will tell anyone that asks that “pee pee comes out of your penis and poo poo comes out of your booty”.

Small victories.

Why is asking for help so hard?

You would think, with all I have been through, that by now I would be an expert at asking people for help.  Or at least accepting help when it is offered to me.

The reality is, I am terrible at both.  I hate leaning on people.  I hate needing help.  I feel guilty every time I accept help.

This past week, I have had the opportunity once again to see how bad I am at this.  I threw my back out on Monday and needed people to help me with everything.  I needed someone to drive me to the ER at 9PM.  I needed someone to be in the house with the kids.  I needed someone to sit with me in the ER until they doped me up enough that I could walk to the car.  I needed someone help me make the kids lunches the next day.  I needed help driving the kids to school.  I needed help picking the kids up from school.  I needed help bathing the kids and getting them to bed.  Hell – I needed help getting myself breakfast and lunch… and prescriptions.

And that is just half of what I have needed help with.

I am lucky to have good friend and amazing parents how live close by.  I have not lacked for people to help me.

What I have lacked were the words “I need help”.

In all of this, I only asked for help when my back first went out.  Of course, when my dad asked if I needed to go to the ER, I said I didn’t know.  In reality, I knew.  I just didn’t want to burden him by saying yes.  Once my parents were here and they saw the pain on my face, I still told them I wasn’t sure I should go to the hospital.

When I broke down in tears trying to change into leggings from the jeans I was wearing, I still didn’t ask for help or to go to the hospital.  It wasn’t until my mom gave me that look only a mother can give and said “You are GOING to the ER” did I finally agree.

Now, four days later, I am still not asking for or gracefully accepting the help that my parents have selflessly been giving me.

And now I find myself asking why.  Why am I so unable to accept help?

I am a proud and independent person.  I often think of myself as someone who can do everything – no matter what.  I hate the feeling of failure when I realize that I can’t do everything.

This is something I am working on – but obviously… I have a very long way to go.

Oh… and Mom and Dad… since I know you are reading this… you are the BEST.  I do not know how I would have gotten through the past few days without your assistance… ok… the past few years without your assistance.  I am so damn lucky to have you guys in my life.

Sam the Anti-Preemie's Gandparents