Sucker-Punched.


They were polite people.  They smiled and nodded their heads.  They understood.  They were helping.  Mostly, I remember their teeth as they smiled.  I was lulled into a sense of calm.  Everything was okay.

Isolated, in my own world, I have no more than a passing glance at other children my son’s age or younger or older for that matter.  He’s the only one.  How different could he really be at age five?

Then, yesterday, when I was in a group, the polite people called me out.  They took me in a room and left my son with his aides.  There was no smiling.  I felt uncomfortable, isolated and scared.

They dropped these words:

“We don’t think your son should remain in his kindergarten class.”

BIFF!  POW!  Sucker punch to my gut.  I was completely unaware there would be a beating without some name-calling and a challenge first.  But there it was.  Way to fight dirty.

As I reeled from this punch, I caught my breath enough to flail a wild punch that struck air.

“But he is having no trouble with his homework.  He is learning to write.  He is doing the worksheets!”

Silence.  They watched to see if I’d get up again.  And then, just as I sat upright?

“Academics is not the issue.  That is not our concern.  His receptive language and his expressive language is not there.  He cannot focus.  He does not follow instruction.”

ZAP! ZONK!  Whacks to the side of the head.  What the hell?  My head was spinning.  Down the hall, through the closed door, I could hear my son talking to a tutor as they took him outside to play with something as a reward.  It was so ethereal.

More silence.  They watched me try to recover.  No teeth.  No smiles.  Nothing more than anticipation of my next move.

“Wait.  Why can’t you teach him to receive the language, to express the language and to focus?  Isn’t that what you are for?!”  (Possibly said a little nicer – no guarantees after two successive blows, both of which knocked me down).

No smiles.  Looks of condescension.  Pity.

“Let us put it this way.  It’s like if I took you from basic math to fourth level theoretical physics.  I could put you in that classroom.  You’d pay attention to the first couple of minutes, but as soon as the equations went over your head, you’d say, ‘You lost me’ and tune out.  That’s what is happening here.”

Politely again, they had removed my rose-colored, heart shaped glasses, dusted me off, then dropped the glasses on the pavement and ground them to dust and shards with their shoes.  They gave each other a passing glance of disapproval and looked back at me.

My heart was broken.  I could see the blood running straight from my heart onto the pavement below.  The streaks of red mixed with the ground up rose-colored glass and my tears.  Pointing to the mess, they screamed.

“CAN YOU SEE IT NOW?  IT’S ME, AUTISM.  I HAVE LOTS OF VOICES. YOUR SON HAS ME INSIDE HIM.  YOU CANNOT WISH ME AWAY.  WAKE UP!  YOU CANNOT PRETEND HE IS NEUROTYPICAL.  YOU NEED TO FACE REALITY.”

They pushed my face against the asphalt.  All those haunting voices of autism.

“We would not be here if your son could walk into a kindergarten class and flourish.  You would have never needed us if he was going to make it on his first try.”

The beating, accompanied by these extra slaps, was making some sense to me.  Yes, I would tune out if I skipped 17 intermediate steps between one class and the next.  My son cannot follow a 15 minute story.  He cannot follow 10 step directions provided in a group and go to a table to perform the task just given to him.  If he makes it to the table?  He spaces out.  He does not do the task.  He does the task 1/3 of the time when prompted repeatedly.

Autism is ugly.  It is cruel and it is a disability.  My son?  He is beautiful.  He is kind and smart and good-hearted.  Autism is a villain.  It has my son hostage.  People want to say autism can be beautiful.  Autism is not beautiful.  The child is beautiful.  All children are gifts from God.  Some people say autism is part of who my son is and if I don’t love it, I don’t accept him for who he is.

That’s just not true.

If my son had a wart on his nose, I would not say it was beautiful nor that I wouldn’t love my son if I sought to get rid of it.  Autism, to me, is no different.

As my face was pressed against the cold pavement, I realized something.  My son and I?  We’ve never had a “normal” conversation.  I’m not saying I need one or that I don’t love the exchanges we do have.  Any time there is communication, it is like gold.  But there has never been a time that he said, “Hey mom, whatcha doin’?”  There was no time that he said, “This girl is chasing me on the playground.”  There was no time in his life that he said, “I don’t wanna…(insert anything here).”  Instead, I get handed a remote control, “Watch baby hawks.  Rewind.” on the 12th time in a row that we watch the same 20 second segment of Team Umizoomi.

I could give you some sappy crap that it’s okay.  But you know what?  It’s not okay.

Life is out there.  It’s happening for everyone else in a different way.  We’re living in a time warp.  It’s slow in here.  And everyone out there?  They can’t understand why we are in here. I don’t understand why we are in here.

I specifically know at least one person who will say, “Aww, just put him in with the other kids.  He’ll figure it out in his own time.  Don’t pull him out.”  Do I really want to explain what is going on?  Will she even listen to that?  People only hear what they want to hear. And it’s hard to explain.  I can never really convey it right.  “Why doesn’t your son answer me?” “Why is your son so rude?”  “Why don’t you control your kid?”

Can any of you really say you understand “autism”?

No one outsmarts autism.  Some people hide autism pretty good.  Not in this house.

And guess what?  Even with all my lawyer tools, I can’t appeal the ruling of “autism”.  It’s stuck to my son.  It’s not going to let go.  And it hit me hard yesterday.  It threw my rose colored glasses off.

I’ll get up again and again and fight for my kid.  Just like we all do.  It’s just not easy to be upbeat about it all the time.  Today is one of those times.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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36 Responses to Sucker-Punched.

  1. I’m so sorry to read this. Have they (or you) tried getting him an aid ? 1on1? Within the classroom? Seems like there are so many options available that they’re passing up. Just to remove him from the class, without trying other things, seem to me to be giving up too easily. Least restrictive environment seems to fit this scenario. I hope you get what you feel your son needs/deserves. I know it’s hard to swallow these things. Stay strong. Your son is filled with love, and has a world of possibilities in front of him. Sometimes, we have to pave the road for our children to get there. Good luck 🙂

    • solodialogue says:

      Thanks Rhonda. The sadder part is that he does have a one-on-one aid in the classroom. They are going to try to find an alternative school… Where and when are unknowns. And he loves his class and his teachers.

  2. dixieredmond says:

    I have walked in your shoes. I’m sorry this happened. i KNOW how hard it is. Is it appropriate to send a hug to a stranger?

  3. Jackie says:

    Hang in their, one day your son will grow into a man that you will be very proud of. As you will know the fights and battles hes going though, and just how much hes learned, and how far he has come.

    He’ll always be special, unique, and that is not just his weakness, but his strength also.

    • solodialogue says:

      Thanks, Jackie. I am proud of the little guy and that’s what makes this so hard. I feel like they don’t see what he can do or his potential to do it and they think I don’t see what he can’t do and that it will be much slower to get there… Your words are a gift that soothes and I am very appreciative.

  4. Kelly Hafer says:

    Okay. First, emotionally, for me – even just a follower of your blog, this is crushing. Karen, God bless you and T, this just breaks my heart. I a just so sorry that after this short of time, they gave up on T. The school system has given up and in doing so has failed one more special needs kiddo.

    Now, second, I want to say that (as you know) Ted and AJ are in a special autism school. They attend full day class with a 2:1 ratio. This school is not perfect, they still, believe it or not, want to put the boys in a box – an autism box, but it is still a box! BUT…complaints aside, my boys are LEARNING. They aren’t doing the academic stuff formally right now. Except – AJ can now write his name. Ted said the best sentence to me last night – the best sentence he has ever said. He said, “I hope I like this pineapple.” Sounds really minor, but this was HUGE.

    I know I am rambling, but I want to tell you that autism school – even for a little while – can be WONDERFUL. Knowing when you walk in there that people understand autism, the school deals with it all day. No barely trained aide figuring this out as she goes, but real, honest to goodness professionals.

    I just want you to know that there is life after public school.

    Biggest hugs to you and T. Sending so much love your way.

    • solodialogue says:

      Kelly!! I’m so excited that AJ is writing his name and Ted is sharing how smitten he is with the pineapple! That is really good and cool stuff and NOT minor at all! (I have a special soft spot for Ted, as you know…) Autism school would be great – if there was a decent one here but quite a while back I wrote about the “autism” school they offer here which is a pathetically crapped room with 3 other kids… very sad… We will take it one day at a time, and see what the testing shows. (T is in a private kindergarten class with an ABA aide but they say it’s not enough. 😦 I really don’t know where we go from here – it seemed to be such a perfect fit). They do have to find a new school that I approve before I will consent to pull him – One day at a time, I guess. ❤

  5. Julie says:

    Oh my friend, I’ve been your shoes on more than one occassion. First it was “he’s just slow to talk”. We went to speech therapy evaluation where the therapist pushed us hard to see a developmental pediatrician. “Okay” I said no knowing what the hell a developmental pediatrician was. Then my sister-in-law, a pediatrician, told my husband “there’s nothing to worry about… unless she tells you that you need to see a developmental pediatrician”. ~thud~

    We enrolled him in a special preschool and while preparing for his IEP for kindergarten, my husband and I expected that he would be put into an inclusion program. At the meeting we were told “he just has too many needs. Kindergarten is half day and if he went to an inclusion program, he’d spend all his times in services”. While I knew he was receiving a lot of services, I guess I didn’t realize how much he was getting and how all incompassing it could be.

    I will tell you, all my ass kickings have turned out to be blessings because they put my son on the path he needed to be on. I hope yours was not in vein. {{{hugs}}}}

    • solodialogue says:

      Thanks Julie. That “thud” you talk about is just something people who are not in our shoes can understand. You know, I think how we react may sometimes be why we call something a “sucker punch” or “kicking” but really, there must be a better way these “professionals” can share their opinions without ambushing and hurting us. I’m not saying we should always be all “kumbaya” and all and not sugar coating information is okay but professionals should not hold back and then just diarrhea all over you with blunt information – it’s cowardly and it feels like someone just regurgitated a month worth of food on us. There has to be a better way. (I’m glad your son is on the path he needs to be! – Show me the way!)

  6. Karla (Mom2MissK) says:

    Oh, Karen. I just don’t even know what to say right now. I am so sorry.

    I wish I had something uplifting and supportive to say, but I’m just floored. How could they give up on him so soon? It’s not right. It’s not fair.

    You know what? T deserves better. He’s a beautiful, inteligent little boy and he deserves a school where he will be welcomed with open arms…. a school where everyone doesn’t HAVE to be on the same lesson with everyone else… where he can excell and learn at his own pace.

    I’m praying for you, girl (and I’m not the religious type, so that’s saying a lot). There is a place for T and gosh darnit, you are the mom to find it.

    • solodialogue says:

      Thanks Karla. You know, they aren’t “giving up” but they are taking him out of a really loving, structured environment for who knows what? I did demand that before he is removed they must find an alternative school of which I approve and they agreed. I wonder how they will manage to do that…

      Thanks for the prayers – I’m grateful – more than I can say. xoxo

  7. KWombles says:

    ((()))

  8. Teresa says:

    Sending big {{{{{{{{{HUGS}}}}}}}}} to all the parents of a special needs child in your audience. Our family has been there and been through many difficult meetings with school officials. They are never easy.

    I wish I could be a buffer from the well meaning teacher or therapist who matter of factly tells you your child is behind in this and this or will never do that… The experts use statistics to back up their statements. Interestingly, statistics are rarely 100% to 0. There are often, and sometimes more often than not, people who rise above the odds. But if you aim too low your child may not reach his full potential.

    In our experience when the teacher/specialists decided they could not meet our son’s needs they were right. Not because they weren’t able, but because they had decided they weren’t. Not everyone can see the potential within your child. Not everyone is willing to or has the time to work with your child. Find someone who will…maybe it’s you. I’ll not promise the going to be easy. Still, every bit of effort, every stone you move, will make a difference. Remember as parent you are your child’s best advocate.

    • solodialogue says:

      Teresa, you have been an amazing inspiration and great friend to me on this blog. I am very grateful for all your advice, especially considering how well you have done with your own son over the years. Whether to homeschool or not is too early a question for me now. That does not mean I am not teaching him at home any time we get the chance. You do motivate me to work harder and not back down. I think, in this boat, we’ve all had some kind of sucker punch at some point. How we react is what is important, so I just have to pick myself up and keep on going…

  9. Jen says:

    Well that’s some BS! Especially after reading that he has his own aid! We’re sending our little guy (with SPD) to a Montessori school right now to see if it’s a better fit. It’s a mixed age child-centered class with a small teacher to student ratio. It’s been a few weeks and the teacher hasn’t given up on him. We asked her to tell us honestly if she doesn’t feel like he’ll succeed there since it’s not very structured and he doesn’t have his own aid here. She seems caring and determined. It sounds like you may need to find teachers with these qualities for T. You’ll find the right school for him, Mom. I know it.

    • solodialogue says:

      I’m glad your little guy has someone who is caring and determined. T’s teachers are all that – this is not coming from his kindergarten teachers… Each ingredient in the special needs educational recipe has it’s own interest to protect. Each piece is looking out for itself – I think that sometimes interferes with what is in the best interest of the child. I just don’t know if that’s happening with my son. I intend to go watch him in class myself to see what is true or not… Thanks for your support, Jen. I thought I did find the right school – After the sucker punch, I’ve been thrown off my confidence – I need to figure out what is in my son’s best interest and get it done.

  10. Broot says:

    *****hugs***** I feel like finding those people and going all mama bear on their asses for you.

  11. Kara says:

    Stinks! There is no perfect situation when Autism is involved and it seems like such a shame to pull him from an environment he is clearly enjoying and doing well in. You’ve sure had a lot on your plate to deal with lately. The sun will come out soon! Hang in there.

  12. Denise says:

    Oh Karen, how frustrating for both you and T! Has the school thought about the possiblity of having T spend part of his day in his regular Kinder classroom with a trained 1 on 1 aide and then having him go to a Specialized classroom for his academics to work on his expressive and receptive language?
    Are there schools in your district that specialize in Autism? If so, maybe you could go visit to get a feel for the place. (You might feel better.) Even if T does loves his teacher and his classroom, once he is use to a new learning environment, I bet he’ll love it too!
    Love to Both of you!

    • solodialogue says:

      Thanks Denise. You would know but Washington probably has better programs than we do here. T was spending 3 hours in kinder classroom with a 1-on-1 ABA trained aide to facilitate the group interaction and listening to the teach and then 3-5 hours with his tutoring staff in ABA, speech and OT – really nothing more to do unless I go in and facilitate on my own which I feel like I’d have more success just because I’m his mom. There is a BS “autism” class which I blogged about quite a while ago- it is the worst of all programs I’ve ever seen and very sad that any child must attend it. I do hope he can acclimate to a new learning environment because this one is pretty special. He is one who needs a strict and predictable routine. Love to you too!

  13. Aspie Mom says:

    1) Denise’s option is usually a good one
    2) If they put him in a different school, then they pay. Get to work!! There are some AMAZING schools in the world!!
    3) my 13-yr-old has never reported, never asked anyone how they are, never looked to see what was happening before he started talking. All conversation is still perseveration.
    He has also never lied, never ever intentionally hurt someone (mainly because he can’t imagine anyone would do that, even to their bullies), never said something just to get what he wanted (except “I want”). and his heart is still so pure and beautiful.

    Sorry for being a noob. Does your son read? Does he have an iPad?

    • solodialogue says:

      I love your second suggestion and it would make a lot of sense if I had not already tried to find some amazing schools within the area. I can’t drive that much further – we drive 30 miles just to get to where we work and where there are more schools for him to attend. The school he is at is one of two good programs (the other was full). If they can find another school that is acceptable to me, I will allow him to transfer. Absent that, we’re gonna have another fight – and I will be ready this time.

      I don’t know if words convey it well enough but I have immense appreciation for what you share here of your own experience with your son. He sound so much like my own child. My son has been able to read and spell since he was about 2 years old. He uses his iPad daily and when I’m not on my MacBook – he gets on the internet and goes to his favorite web site where he spends up to an hour playing games.

  14. eof737 says:

    Good Lord! This left me speechless…. I am so sorry and sad to read about the exchange you had with the school staff… painful. You wrote with such passion and anger; we are behind you all the way…Are there any other schools in your district that specialize in Autism? I hope you can find him another program soon… Hang in there!

  15. I was crushed reading this… I’m so sorry they just gave up on him after such a short time and without exploring any other options at all. I’m hoping this will turn out to be a blessing in disguise because you’ll find someplace much, much better where lil’ T is able to thrive and flourish. **hugs**

  16. ((hugs)) I’m mad they didn’t fully assess him before he started to see what his needs were and if they’d be able to meet them. I’m so so sorry, I feel your hurt. It is wrenching to take him from somewhere he is settled, but I’m hopeful you’ll find a better match for him. i just wish I could hurry that whole process for you. Keep hanging in there mama, he has you on his side, it will all work out.

  17. Lizbeth says:

    Cripes, is that what happens when I drop off the planet?!? Woman, e-mail me next time. I promise not to disappear. Hugs to you. Hugs. Talk about getting kicked in the gut. I don’t know why they didn’t forewarn you about this, its just awful. Now granted they are admitting they are not the place for them but it does not make things any easier. At all. And you are right. Autism sucks. The child? Now that’s a thing of beauty.

    • solodialogue says:

      Ooh, I have it in writing! I will email you next time! Thanks for the hugs. There were some hints when I placed him that it might not work. But those hints did not clue me in that it would be 30 days into school. I think the title of this post says it all… xoxo

  18. Tessa says:

    I’ve been out of the loop lately, and I came here to catch up this morning. I just want tok send you big hugs. I’m so sorry for everything you guys have been through lately. Just–big, big hugs.

  19. Pingback: Seeds of Strength. | Solodialogue

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