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!

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.

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.

Facing my new reality

Sam the Anti-Preemie: Eating a pear
Back in December, I wrote about my joy at Sam’s PDD-NOS diagnosis. I was relieved that he was not diagnosed with Autism, but his own odditites, some of which were autistic in nature and some that were not. Since that diagnosis, I have done everything I could to help Sam achieve “normalcy”.

The first thing I did was fire Sam’s speech therapist. There were many reasons why I made the change. Mostly, I was tired of her telling me my son was autistic. When I got the official diagnosis, I took that as my proof that this woman was not right for Sam or me… so I let her go. This was one of the best things I could have done for Sam. He immediately took to his new therapist, and started to show progress right away.

With speech therapy in a good place, I started Sam in Floortime therapy. This program was a great first step into early intervention for PDD-NOS. The therapist we worked with helped everyone (Sam, Peter, Irene, my parents, both nannies and myself) learn new ways to engage with Sam and spark his interest in playing with us. We stayed with this therapy for two months.

Then, I Sam was evaluated by the Regional Center of the East Bay, and they determined that Sam was better classified as Autism Spectrum (yes – DSM-V helped with this new classification). The recommendation by the developmental psychologist was for us to enroll Sam in ABA therapy for a minimum of sixteen hours a week.

Being determined to help Sam in every way possible, I found a wonderful ABA team and we got to work.

Sam has not been in ABA therapy for over six months. He has shown wonderful progress in a number of areas. His progress was a great relief to me. I was starting to relax, and believe that Sam would be off the spectrum in now time, and would just be a normal little boy, with nothing holding him back.

Well, I am here to say I was wrong. I was wrong about a lot of things.

  • I was wrong to downplay Sam’s condition.
  • I was wrong to want Sam to be someone he was not.
  • I was wrong to think anything was going to hold Sam back.

By turning three, Sam had to undergo a whole new suite of tests and evaluations. The results of those evaluations are in, and they were not at all what I was expecting to hear. Sam is delayed at least a year in all major categories tested: gross motor, fine motor, communication, social communication, self help, interpersonal relationships, social skills, etc. A few key stats:

  • Social-Interpersonal relationships: Sam tested equivalent to an eight month old
  • Socialization play: Sam tested equivalent to a one year old
  • On the SCQ scale (one of the main autism screens) Sam had a score of 25 on one persons evaluation and 20 on another. 15 puts you on the spectrum and 22 is the cut off from other disorders and autism.
  • The ADOS (Autism Diagnostic Observation Schedule) results were no better. Sam scored a 19. Autism cutoff is 12… Autism spectrum cutoff is 8.
  • On the ASRS (Autism Spectrum Rating Scales) testing, Sam’s scores were very elevated in most areas.
  • Receptive language, Sam tested equivalent to a one and a half year old.
  • Gross Motor skills, Sam tested equivalent to a one year ten month old.
  • Fine motor skills, Sam tested equivalent to a two year 3 month old.

Based on all of this, Sam will continue his participation in the Regional Center. The Oakland Unified School district has offered Sam placement in an Autism classroom (5 hours a day, 5 days a week), speech therapy and Occupational Therapy. For now, I am not going to put Sam in the OUSD classroom, but place him in a nearby mainstream school two days a week (with one of his ABA therapists going with him). In a couple of months, I will sit down with Sam’s ABA team and we will make a decision if he should be enrolled in the OUSD Autism classroom.

Bottom line to all of this – Sam has Autism.

Say it with me, Sam has Autism.

I will practice saying this over and over.

It is my new reality.

It is Sam’s continuing reality.

Compare and Contrast

Sam the Anti-Preemie
Disclaimer: Since I am sure this might worry one particular friend – let me go on record… I LOVE your son. I celebrate his amazing progress. I love seeing him every week. I want nothing but for him to continue to be a presence in my home and my life. Please, do not be disheartened by what I am about to write. I know you are keenly aware that I might be having a hard time with the different paths our boys are on.

Ok – with the disclaimer out of the way, it’s confession time. The past few weeks, I have been blown away with Sam’s progress. Each day, I see him improve. I see his eye contact with people he knows and even with strangers grow. His communication skills are expanding by the minute. At Occupational Therapy this week, his therapist teared up a little because she felt like Sam had turned a huge corner. To quote her, she told me that “I have my boy – personality and all”.

Then, Wednesday rolled around, and Sam’s nanny share, B (another miracle preemie), came over. As I said in the disclaimer, I am totally enamored with this little man. I have been with him from the beginning – through some of his worst and scariest times. Each week when B arrives, I marvel at his progress. This child has a lower survival chance than Sam, and he has done so much more than survive. Not only is he thriving… he is ahead of the curve in most things.

Watching B talk and interact with myself, the nanny, Sam’s therapist really threw me. Don’t get me wrong, I am so thrilled that B is where he is developmentally… but I couldn’t help but compare Sam to B.

I know. You are never supposed to compare children.

I know. Everyone develops on their own timeline.

I know. Just because one child can do something at a certain age, doesn’t mean all children can.

I know. Don’t compare the children.

I know.

Still, I can’t help myself.

I want my child to initiate a conversation with me.

I want Sam to bring me a toy and tell me how much he likes it and wants to play with it.

I want Sam to walk into a room, run over to me, hug me and say “Hi Mama”… unprompted.

I want to hear Sam say things that are not memorized phrases or random babbling.

I want Sam to tell me not to laugh at him when he says something that I find funny but he said in all seriousness.

What can I say, I want this progress to be faster.

Where to start?

Honestly. I am not sure I even know where to start – or where this post will end up. My mind is a jumble with all of the evaluations and recommendations and changes that I am just overwhelmed with it all.

Since I triumphantly posted that Sam did not have autism, but PDD-NOS a shit load has happened. Some good, a little less than good, and everything in between.

The day we got the official diagnosis, we all hoped into the car and drove up to Lake Tahoe for the holiday break. This is a family tradition, and one that I honestly love. There is something about spending two weeks in my parents house in Northstar with them and the kids that makes me smile. We also timed our trip perfectly. By leaving a few days early, we managed to get up to the mountains before the big storm hit; which meant we were there to enjoy it. And enjoy it we did. It snowed huge fluffy snow flakes for days. Irene made a game of clearing off the railing on my parents deck every five hours just so she could see how much snow was actually falling. The best though was Sam. The first time he really noticed the huge snowflakes, he looked at me all confused. Then he looked back out the windows, got a huge smile and said “bubbles”. From that point on, we all called snow “bubbles”… well, until Sam threw a temper tantrum that the “bubbles” would not pop. Then we corrected him and called them “snow bubbles”.

Our trip to Tahoe would have been perfect had it not been for a vicious bout of the stomach flu that started with Sam, migrated to me then to Irene and then to my dad. Irene, my dad and Sam showed their strength and resiliency by bouncing back quickly… I was down for the count for almost four days.

  • Sam\'s best ornament
  • My car after the storm
  • Irene unwrapping her Santa gift
  • Irene showing her joy at her Santa gift
  • Sam and Irene hanging out in the kayak
  • Dr. Sam
  • Irene out in the snow
  • Sam looking happy
  • More Sam and Irene in the kayak
  • Irene and me on the indoor ferris wheel at Scheel\'s
  • Sam and his favorite xmas gift: Beaker!
  • napping with Beaker in the car on the way home

The break of Tahoe was really great for all of us. It helped me have some time to digest Sam’s diagnosis and spend lots of good quality time watching and observing him.

When we got home, I set about starting Sam down his new path of therapies. The first thing I did was let his speech therapist go. Now that we officially had word that Sam was on the spectrum, but not Autistic, I didn’t need the negativity of the therapist dragging me down. It felt great to cut those ties. I already have enough anxiety about Sam being Autistic, the last thing I needed was a therapist telling me at every turn that his actions are classic signs of Autism.

With the speech therapist out, we started in with the DIR/Floortime therapist. This doctor came highly recommended to us by the developmental pediatrician. I really liked her and her approach. SSo far we have had only two sessions with her. The first was just the doctor, Peter and myself. She asked us millions of questions and talked to us a bit about what DIR/Floortime is all about and how it can help. Her second visit was at out house. She want to watch Sam in a familiar environment. Mostly what she did was observe Sam and I at play and to worked with us on things we could do to make his play time more “meaningful”. It was a really exhausting session for me, as she was here for 2.5 hours… which meant for 2.5 hours I had to be highly focused and engaged with Sam. I know it sounds silly, but 2.5 hour without a break or a distraction really can take a toll on you.

On top of all of that, I have been petitioning the Regional Center to get Sam re-admitted to their program. In order to qualify, Sam needed to have either one 50% delay or two 33% delays. His speech delays counted as one of the 33% delays, so he needed to be evaluated by their experts to see if he had any other significant delays. That evaluation was this morning… and honestly, I am still reeling a bit from it. The good news: we are back in with the Regional Center! The bad news: finding another 33% delay was really easy. Their experts agreed with Sam’s PDD-NOS diagnosis, but they were struck by his “severe developmental delays”. Sam is showing a 33% delay in his cognitive, social-emotional and adaptive skills on top of his speech delays. In fact, in the social evaluation, for interpersonal skills… Sam evaluated at the 9 month level. Yes – 9 months. That was not a typo.

So, what now?

Well. We continue with his OT. I need to find a new speech therapist. We will continue with DIR/Floortime therapy. And… here is the kicker… the developmental pediatrician has recommended we start Sam in ABA therapy. For those that don’t know (and I didn’t know), ABA therpay is 20 hours a week. For those of you adding this up, we are talking 22-24 hours a week of therapy for Sam (and me).

How the hell am I supposed to manage a job, a 7 year old, a house, being a mom, being a wife and 24 hours of therapy a week?! Oh yeah… and making some time for myself in there too.

Needless to say, I have a lot to digest and a long road ahead.

I am still working on getting a new speech therapist for Sam – and am hoping to have that sorted in the next week.

I’ll take that diagnosis

Sam the Anti-Preemie Eats a Persimmon
It could have been so much worse. I was sure that our appointment on Wednesday at the High Risk Follow-Up clinic was going to go so differently than it went. With all of the talk of Autism over the last month, I had let myself become consumed with the reality that I was sure was in front of me. I mean, I had this one speech therapist telling me every moment she had that my son had Autism.

I admit now, I should have listened to everyone else around me. I should have looked closer at Sam. I should have not let this one person feed my anxiety.

No, Sam didn’t get an “all-clear” on Wednesday. But, the physiologist and developmental pediatrician both agreed that Sam is N.O.T Autisic.

What they have diagnosed him with is a mild case of PDD-NOS or Pervasive Developmental Disorder No Origin Specified. Yeah. I know. Having the acronym spelled out doesn’t really help anyone understand what it is. I am sure it will take me a few months to fully understand this diagnosis, but here are the basics:

  • PDD-NOS is on the spectrum, but it is not considered Autism
  • Sam showed mild Autism in some areas, but nothing that was consistent or overwhelming for either of the doctors to consider him Autistic.
  • Sam will need to add a third therapist to his weekly routine to hopefully help him overcome the areas he needs help in.
  • There is a chance that with therapy, Sam will overcome everything, and continue on his path to world domination. There is also a chance that he will not. But at least there is hope!

For me, this means I go from having no appointments for Sam for almost the first two years of his life to having therapy at least 3 hours a week. We will continue with our occupational therapy, speech therapy (but maybe with a new therapist), and add in a therapist that does DIR/Floortime therapy. I am up for it. I would do anything for Sam.

Thank you to everyone for their words of support and encouragement the past couple of months (or, for many of you, since Sam was born). I would not have the strength to get through all of this with out you.

Do I Want To Know?

Sam the Anti-Preemie in the bath
Ignorance is bliss.

I made it through my six days in trendelenberg and pre-term labor by not knowing the real danger both Sam and I were in.  I knew it was bad, but I intentionally kept myself as far from the details as possible.  When the neonatologist came to talk to Peter about Sam’s survival chances, I turned inward and heard nothing.  When Peter tried to talk to me about the choices we needed to make, I told him I couldn’t be a part of that decision.  What I didn’t know, wouldn’t hurt me or Sam.

In the NICU, I employed the same tactic.  I knew we were in for a long haul, but I never let the idea that Sam might not survive enter my head.  There were a number of times when my carefully constructed wall of ignorance came crashing down around me, like the day the doctor told me that if things didn’t change it would be fatal for Sam.  Even on the days when I was shocked into reality, I still chose the blissfully ignorant path.  I liked believing that only good would come out of Sam’s birth.  I liked my rose colored glasses, and I wouldn’t trade them for anything.

Once Sam came home, I felt I didn’t really have anything to be ignorant about.  Sam was perfect.  He was growing like a weed, he was hitting every milestone a mom could wish for.  He earned his name of the Anti-Preemie.  I had down days, where I would convince myself that there was a problem – that Sam was showing signs of Autism.  This became my obsession.  Everything became an indicator.  Sam has chronic constipation… that can be a sign of Autism (who knew?!).  Sam doesn’t always look when I call him – another sign.  Every time one of our home health care workers visited I would ask them if they were seeing what I was seeing.  Every time they would talk me down and tell me to relax.

Then, I really started to notice things.  They were not big things, and on their own they sound like nothing.  But when you add them all up, they started to sound like something.  I voiced my concern to Sam’s OT, and this time, as opposed to talking me down, she told me she had concerns too.  So, we trotted down the hall to the speech therapist and had an evaluation.  And just like that, I had a trained professional telling me that she was concerned that Sam was showing major signs of Autism.

The only way to definitively get a diagnosis is to see a developmental pediatrician.  Because of Sam’s early birth, we have been followed by a specialist from Day 1.  In fact, we just had our two year evaluation with the High Risk Follow-Up Clinic on September 20.   I called the clinic after our speech therapy evaluation to see if they wanted us to come back.  Sam had done so well at his last visit, we were not supposed to see them again until Sam was three.

Three weeks had passed, and I heard nothing from the High Risk clinic… until Friday.  Then I get a call saying, “We need to see Sam next week”.  I have no idea what the urgency was, I was too caught off guard to ask.  I made my appointment and hung up.

Now, I have had a few days to think about this.  Come Wednesday, I will have a much more definitive diagnosis on what is going on with Sam.  I could hear that he is fine, and everyone should calm down.  I could hear that he is most definitely on the spectrum and the future becomes even that more uncertain.  Either way, I will no longer get to be ignorant.

So, here I am, asking… Do I Want To Know?