Wednesday, September 8, 2010


We are just about a year into Diego's ASD diagnosis, and just beginning Kindergarten.  I spent the better part of last year fighting the local school district to get Diego the IEP he needed, eventually hiring an educational advocate because the people at out local school district kept treating me like 'psycho crazy mom'.  Once she showed up I was 'wonderful pro-active concerned mom', it is amazing what bringing somebody in that knows special education law like the back of their hand does, although with the California budget we could only get so much. 

But this isn't about the gut wrenching process of IEP's, it is about how hard school is for our babies.

If you sift through any of the blogs on the Hopeful Parents Blogroll or mine, you will find a group of parents desperately trying to make the new school year transition as easy as they can for their child. 

Before Diego started Kindergarten, I read a lot about how hard school can be on our babies even with an excellent IEP and assistance.  Nothing I have ever read could prepare for what has happened to Diego since starting school last week. 

Diego isn't in public school, he is in a private school mainly because the student to teacher ratio is 8:1.  The local school district wouldn't supply Diego with an aide and planned on main streaming him, they were going to take a wait and see approach.  My kid in a class with 26 students and one teacher without an aide?!?

Disaster much?!?

Unfortunately this was almost our reality.

The private school that Diego attended for pre-school offered Diego a scholarship last minute and we took it.  Every kid in his class is NT, but they are familiar as all of the kids have the attended pre-school as well.  The private school is also partnering with a local autism group and training their teachers for an inclusion program that the school is piloting.  All of this had me fooled into thinking that the repercussions of the change to Kindergarten would be minor.

Silly rookie.

Diego is a different kid right now, I have never seen him this dysregulated.  He is busting his precious butt to keep it together at school, but once he comes home the flood gates open and there isn't a damn thing I can do to help him. 

It isn't just me who feels this way, I know, I am not alone. 

I hope that we will all get through this, that at some point things will get better and settled.  But in the midst of all of the pain and frustration that is going on, I wonder if the administrators and teachers in the school really understand how hard it is for our children.  When a special education team hides behind their half a**ed administered assessments, arrogant and dismissive at best, do they understand that we are on the other side fighting as hard as we can ,not to be a pain in the a**, but to ensure that our kids gets a chance to succeed? 

Why is that frowned upon? 

Why don't they care this much??

I get that times are hard, money is low and our teachers are over worked.

But it isn't an excuse not to take a minute to think about what it is like for our kids to fight a total assault on their senses 7-8 hrs a day. 

I doubt any educator went into the line of work for the money.

I am not saying that all educators are like this, I happen to have a few friends that are amazing teachers. 

What I am saying is that the push back from schools is all too apparent when you talk to a special needs mom or dad, and once we are done trying to fix school so that the next day might be easier for our little one, we go home and try to help our child pick up the pieces in hopes that they don't completely fall apart.

Again, Nothing could have prepared me for how hard this is.


Shivon Carreno blogs about life with a child on the spectrum at 'My Brain Wants To Go Home'


  1. Some days will be better, some days worse... some teachers better, some worse. I recommend you get OT in as soon as possible and introduce them to proper sensory diets, breaks etc.
    My youngest - severely autistic one - never melted at home and held it together most of the time at school with proper OT and EA (aides) supports.
    Eldest, his behaviour at home is inversely proportional to his day at school. ie. the better the day at school, the better the meltdown at home. Best thing to do, is if the weather is decent... stay outside and play for a while when they get home.

  2. Oh, I was so hoping this school would work out. We were just talking about this at our support group - why is it that we have to be the ones to constantly push for what our kids need, and why are we then labeled problem parents when we do?
    I hope things start to even out at home for you. Any home supports you can get, you should take. Our hearts break for our kids every day. Take that deep breath and try to have some escape yourself.

  3. Oh, do I hear you! I have lately been on emotional rampage about how unhelpful the public school has been for my preschooler who has autism. I think they wish we (special needs' families) would either be quiet or go away. They are so busy trying to make it all seem swell that I feel as if I never get a straight answer. I do know this - the severity of my son's autism requires more than what the public schools is equipped to handle. So I am readying myself for a fight to get him into a special school that is better able to help him. Wish me luck! If anybody has tips, please pass them along.

  4. sometimes
    love and hugs

  5. I'm sorry to hear that!
    I'm earning my certification in special ed right now. I follow Hopeful Parents because I find it helps me to put my classes in perspective. And while of course I've heard horror stories, I haven't yet met a teacher or student entering the field for the money - it's because we all care and want to make a difference. I hope things get better for you and you encounter more teachers who haven't lost sight of the goal.

  6. I wonder about this too. Being able, in the classroom, to perceive the signals a child is sending and adjusting accordingly shouldn't be so hard, should it? Though I could never imagine being able to be a teacher, so maybe it is really hard.

  7. @ Esther, it's future educators like yourself that give me hope, it . How thoughtful to come here to gain the parents' perspective!
    @ Leah, Teaching is a such hard job, and maybe it isn't that I'm expecting her to intuitively know my child, but that I would want her to be open to listening to the expert's (me) suggestions. :)

  8. We are about a year ahead of you in the school system and in terms of diagnosis. I can't say that it's gotten easy, but it has gotten better...or maybe I have just gotten better at handling all of it. We did a lot of prep this year from March to August to get ready for first grade after a rocky start for Kindergarten. So far so good. I tell people I'm waiting for the shoe to drop and hoping that it doesn't. We are still in public school, though. I was warned away from private schools because in spite of their great student teacher ratio and best intentions, they may not have the resources to help our kids...UNLESS they are a program specific to special needs kids, which is not something I want at this stage. I figure my kid's best chance to learn social skills is to be around peers who are NT. Here's hoping things will get better for you and your son, too.

  9. Shivon, the difference might just be kindergarten. Give Diego (and the school) the first six weeks to get used to each other before breaking out the warrior mom hat. Listen to his teacher, too. She's just as much of an expert in her own right. :)
    Evan (in his third week of fourth grade this year) was a mess after school his kindergarten year. The OT & I finally decided to just let it be. He was so exhausted that he would melt down if I even SPOKE to him. So he got in the van, I turned on the Mozart Effect cd, and he fell asleep. Some days he'd wake up when we got home, eat, do homework and go to bed early, other days I'd schlep him into the house sound asleep. First grade was a little better, by second grade he was no longer falling asleep on the way home. And the things I thought he needed? He didn't necessarily want them! It's tough letting go that much (I know, I had trouble too!) but Diego and the school are the big players on the stage now...

  10. I want to acknowledge where you are right now, with a big hug.
    And let you know that it will get better.
    I know that because the determination in your voice is so steely clear, that you will find the right path, and you will help them see what they need to do.
    I wish they didn't need the explicit instruction, but maybe (just maybe) Diego is the first ASD kid they've known.

  11. Thank you guys for the great advice and understanding. The 'warrior mom' hat is hung up for the time being, after I sent his teacher a letter detailing his strengths and weaknesses she has made a change or two and really seems to be getting a better undertanding of my little one. It is definitely a fine line to walk....being his advocate and sitting back to kind of just let things far as private vs public, the accomadations they have made for him are fortunately the ones listed in his IEP and for services we have decided just to keep them private. Next year will be public school :)