Thursday, April 26, 2012

My Worst Nightmare...

I'm sure you have seen the video that has spread like wildfire by now.  A Dad in Cherry Hill, New Jersey posted a video on You Tube.  In the video, he played several tape recordings of how his nine year old autistic son's teacher and aide verbally abused and bullied him in school.  Equally other adults in the room (which was an autistic classroom of mostly non-verbal children) spoke up.  How did he obtain these recordings?  He wired his son with a recording device.  And then he sat and listened to the six hours of tape - horrified.

The teacher and the little boy's appointed Aide - they knew that he wouldn't be able to go home and "tell" on them.  They knew - or they thought, anyway - that they would get away with their inappropriate behavior in that classroom.  All of the kids were autistic and couldn't go home and tell their Moms and Dads what happened in school.

This is my absolute WORST nightmare.

We have been so lucky so far.  I am personally lucky that I have a husband who can support us so I can be home with the boys.  We went through some "interesting" Aides from agencies early, early on when Brian was a baby - but I was here to monitor them, so to speak.  I'm grateful for that.  I've heard horror stories from friends who have found Aides and nurses sleeping on the job...or stealing...or just plain not doing what they're supposed to be doing.  Agencies do not pay well - and the training, I'm sorry to say, is not great (no matter what they may tell you).  I truly believe that the low pay combined with the lack of training results in employees who just show up.  Add in some resentment about hating their job - and a child who demands a lot of attention and care - you will test the patience and push the limits of the employee.  That's just my opinion - and I am not talking across the board about all Aides as there clearly are exceptions.  We had one star from that period of our lives, Miss Kara, who is still a big part of our family.  But I'm grateful we found a different way to do things which works so well for us.  As you know, we have had some wonderful helpers - most recently Sara who is just amazing.

We have also been SO lucky with wonderful therapists over the past 4 1/2 years.  They, too, have become important people in our family.  How could we not feel that way when they are clearly so good with Gavin!!  And Brian!!!  Just today Gavin's teacher, Miss Janna, was here.  Gavin loves her so much - it's like he's flirting.  And I know that she - besides being passionate about her job - is crazy about him as well.  When Brian is not napping, she has a way of including him in Gavin's therapy sometimes.  (And sometimes he just muscles his way in, to be honest)  Today was no exception...

And Miss Maggie, too!  Gavin has had her for speech and feeding since he turned three.  And now she is Brian's speech therapist in school!  Having these two therapists work in the school where I send Brian means a lot to me.  Because I respect them...and their opinions...and know that they have our families best interests at heart - it was easier for me to send Brian there.  

Maggie was here today and she, too, included Brian in Gavin's therapy.  She put a picture of me and Brian on the iPad.  Then she showed Gavin a photo of his brother, which she held, and asked him to find the matching "person" on the iPad.  He got it right every time.

And when Brian heard his name as Gavin touched his photo on the screen - he came running excitedly to congratulate (and tickle) his big brother.

I'm sure that along the way I may have been labeled as a "control freak" parent by a therapist or a teacher or a coordinator.  It's very hard for me to give up control of Gavin.  Probably because I inherently don't trust people outside of our home alone with him.  There, I said it.  Yes, I did feel that way about Brian - but Brian is a bit tougher.  He can walk.  He is getting better and better at communicating every day.  Gavin is completely defenseless.  And that is what scares me.  So when I watched the following video made by the father of that Autistic boy - it gave me terrible anxiety and two sleepless nights.  Take a listen before I go on...

A week or so before I came across this video, I had made arrangements to visit a pre-school for Gavin.  I will be meeting Gavin's coordinator there on May 11th and Miss Janna, Miss Maggie and possibly Miss Stephanie (his OT) will be meeting us there, too.

The program is longer than Brian's.  It goes from 9am (after a bus ride from our home for probably 45 minutes) until after lunch.  I was crushed to learn that if I decide to send Gavin here that he would absolutely lose all of his current therapists.  They have therapists at the school that would see him during school hours.  I can understand that, in a way, as it fosters continuity and consistent communication among the team.

It was a lot to take in, though.  The thought of a new school...and ALL new was a lot.  And I wondered if it would be too many changes for Gavin.  But I've always had in my mind that Miss Sara would go to school with his Aide.  I didn't have the guts to ask the coordinator on the phone if they would allow this.  She had already bummed me out with telling me he'd lose his current team - entirely.

I'll be praying hard until the meeting that this won't be an issue...

I can't imagine why it would be.  They wouldn't have to pay for Sara.  They would have an insider right there that could translate Gavin's actions for them.  She could ensure that he was safe at all times. They would have an extra set of hands.  What could possibly be the problem, right?


 After Sara watched that You Tube video, she said to me:  "And THAT is why Gavin will always go to school with a buddy."  That's exactly how I feel.  It makes total sense for a child like Gavin who can't walk, talk or feed not potty trained...and can't tell us when something is bothering have someone who knows him well (and loves him) at his side.  And as a parent, why wouldn't we want to send Gavin into the world with a friend - of his AND of ours - instead of a hired stranger who is possibly underpaid, undervalued and....need I go on?  If I am told that Sara can't go with Gavin to this particular school...and it's non-negotiable?  I'll find another school.  That's all there is to it.

I know that one bad apple doesn't and shouldn't ruin it for the whole barrel.  But after hearing and reading MULTITUDES of horrible, depressing stories about the abuse of special needs children in schools (just google it - you'll see!) ...I feel more protective than ever.  Want to know what I would LOVE to propose?  That every school has cameras.  I've heard about day cares (for children and for pets!) that let you log in remotely from your computer to watch a live cam.  How awesome would that be???  And just knowing that anyone could be watching at any time - that would keep ANY teacher or aide on their toes.  Much like a nanny cam...but you wouldn't hide that it's there.  All upfront - no secrets.

I'd love to hear your thoughts on this.  Especially if you are a special needs parent who has had experience with this situation...a teacher...a witness to this type of bad aide...I want to hear from all of you.  

Who knew that being a Mommy could be this agonizing.  (Besides you, Mom.)


  1. I think I've told you before that I used to work in Disability Services for a university. We had students who had aides go to class with them. I worked as one for a friend of mine who has CP for a couple semesters. Under law, if a student requires an aide, at least at the university level, the school can't say no.

  2. You know my thoughts...I expressed them when I first saw this video. It turns my stomach to think that ANYONE would speak to a child like this. I do not think it is only special needs children who need to be protected, but all of them! When 1 in 4 children are bullied by a teacher or student, and 1 in 10 will be sexually abused by a staff member at school, and both are thought to be UNDER is very obvious to me that there is simply not enough protection for students in schools!

    I don't think I could send my children into that kind of environment (public school in general!)...when I send my children into the care of another person, I am telling them that this person is now over you and in charge. I am also telling them that this person knows about this subject that they are teaching you, and I disagree with much of what the public schools teach, and wouldn't want to ask my children to sit through thier teaching of things that go against our faith...

  3. Abby...I hope you read this! I know that it's possible - but I'm worried that I won't always be able to "choose" Gavin's school aides, and I think that's my biggest issue. If there's anyone with experience that can speak to this, I'd appreciate insight!!!

  4. Kate-

    I completely agree with you on everything. There are people out there who just meander through life and go to their job just for the job, they don't care about it. In the therapy field, or any medical field at that matter, you need to care. I also wanted to say that even if you are a "control freak parent", you have every God given right to be! People can run their mouth all they want, but until they have a child that requires every inch of your soul to care for, they wouldn't understand. If they were put in the same position (Assuming they actually care, cause we all know there are parents out there who do not care) I would hope they would do the same. My Uncle Henry is special needs, he is 44 year old and has been taken care of by both my grandparents since the day he was born. I've grown up seeing them pour their soul into taking care of him year after year, and he is well taken care of. I've said it before and I'll continue to say it, you guys are awesome.

  5. KATE,
    I have followed your journey for a year or so now. I am so very impressed by you and your outlook on life. I am a special needs teacher and have been so for the past 23 years. I am a high school teacher and have always been so - I admire your for your views on your child. I teach in a public school and we have children bussed to us from a state facility that is located in our town. How I wish that they all had parents like you. I can not tell you how many parents don't care and are not involved at al in their children's education. How I wish that more parents were involved with their child's education. It would definately make our jobs a little easier. I live in SC and I must say that at our school we are very lucky. There are 9 special ed teachers on staff and we have all worked together for 12 or more years. Our aids are exceptional and have been with us that long as well. Keep looking for a school, you will find the right fit for Gavin as well as for you. Keep fighting for him - if you don't - who will? You are an awesome mom and Gavin as well as Brian are lucky to be able to call you mom!

  6. You are Gavin's most important advocate. I work with children with different needs. Having someone who knows him is a need that Gavin has and so that should be the end of it. I agree, either his aide goes with him or he doesn't go. Chances are he would be fine, but you don't want him to be the statistic that is harmed. Stand firm.

  7. I was absolutely sickened by that video on YouTube, and I immediately thought of my 5yr old autistic nephew, Davin, who is a beautiful and sweet boy, but non-verbal. How would his mom ever know if he was being bullied and mistreated like that at school?? Children with full verbal faculties often do not report mistreatment or abuse by teachers :( And cameras, while better than nothing, are a very poor substitute for the presence of a true child advocate. When cameras are placed in the open, it's very easy for staff to figure out where the cameras *can't* see. Also, the cameras don't have audio... just video. As long as they say it with a smile, they can say anything they want to your child and you'll never be any wiser. Sending Gavin to school with a "buddy" is the right choice, the most reasonable and logical thing to do. Don't let anyone bully you into doubting your instincts as a mom! You know what you're doing :)

  8. Darnit... I wrote a big comment and it wiped it out when it made me sign into my Google account (even though I have Gmail open in another tab!) Blerg.

    The gist of my message was this: You are absolutely doing the right thing with your plan to send Gavin to school with a "buddy"... someone you know and trust. It's the most reasonable, logical thing to do. Don't let anyone bully you into second-guessing your instincts as Gavin's mom. You know what you're doing!

    I also commented that cameras (while better than nothing) are a poor substitute for the presence of a true child advocate. When cameras are right out in the open, everybody knows where they are and can easily figure out where they CAN'T see. I think this is the main reason people hide their nanny-cams. You can't possibly know the blind spots if you don't know where the camera is! Also, those cameras don't have audio... just video. As long as they say it with a smile, they can say whatever they want to your child and you'll never know it.

  9. No one else has the same vested interest in your child, so you have every right to be a "control freak parent". You are taking advantage of the resources available that best fit Gavin/Brian/your family's needs, and anyone who would question your choices or fight you on them, if probably not worth being involved with.

    We have three sons with various special needs who are turning into competent and charming young men and we truly believe it is because we are "control freaks", too. "Control freaks" who seek out opportunities, constantly evaluate learning environments, aren't afraid to speak up on our child's behalf and fight any ill-fitting system.

    Your children will know how much they are loved and respected by how dedicated and driven you are to help them reach their potential.

  10. YES to the camera idea--I think it's brilliant.


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