Thursday, January 28, 2010

Protecting your non-verbal child

Parents of children who don’t speak fear their child’s vulnerability. When your child is non-verbal, he can’t tell you if something bad happens at school, in the community or with a worker. Last week I received an e-mail from the mother of a four-year-old boy with autism. She wrote to tell me that while receiving ABA therapy at a private centre, inappropriate photos of her son were taken. She shares her story in the hope that by alerting others parents to the potential for abuse, she can save another family from going through a similar experience.

My son had been going there for a year and every session I would stay and wait for him. I could hear him scream through the walls and they would tell me he needs to ‘pair’ with his therapist and it’s his ‘behaviours.’ In October there were changes and we had a new therapist. Her first day with my son she came running out of the therapy session into the waiting room and asked if I had a camera. I said no and why? She asked the administrator, who said yes, take my iPhone. The therapist said: “Your son is painting, he is covered in blue paint so I want to show you” and ran out of the room. Over the next little while she returned the iPhone to its owner and I asked to see these pictures. I was in shock to see my son standing in his diaper covered in blue paint, crying. There were many pictures taken. But none of him actually painting, just of him crying with blue paint all over him. There were pictures of him being cleaned up and pictures of him naked: three full frontal photos. I felt sick to my stomach.

Does my child not have a right to privacy? When you send your child to school do you expect them to be painting in their underwear or diaper? Why would someone take pictures of a child naked? My son could have been cold for two hours, standing in his diaper. When your child is non-verbal, he can’t tell you what’s happening. The guilt I feel that I trusted this private centre with my child is unexplainable. Our local children’s aid is investigating this case and the police said that while the photos are not pornographic, they are inappropriate. No apology or explanation has been given to us by the director of the centre. I would like to educate as many parents as possible to prevent this kind of horrible occurrence from happening to another child.

Following are precautions I've learned to take in choosing a private therapy centre or daycare:

Call your local children’s aid to ask if any incidents at the facility have been reported, or if the facility has been the focus of an investigation.

Ask to see qualifications of the person working with your child.

Check references yourself. Don’t be afraid to make enquiries with the police regarding records.

Expect timely responses to your concerns and questions.

Before committing yourself to a facility, ask to speak with other parents and view the facility while in operation.

Make an unannounced visit to get a realistic view of how the place runs and the involvement of the senior staff or directors.

Be involved. Don’t take a kind smile as proof that your child is well taken care of.

If you can view your child under someone else’s care, do it.

Look for sudden changes in behaviour in your child. You know your child best.

Read contracts carefully and don’t be afraid to question.

Share information and network with other parents.


To the mom who was courageous and selfless to share her story AND educate other parents, I say a HUGE thank you. It's hard enough when you find out your child has a disability, and as parents we hope that the facilities, therapists, daycares etc. we choose will respect the rights of our children. We shouldn't even have to give it a second thought but apparently we do. I'm sorry this happened to you and your son and hopefully you will feel some closure by helping the rest of us understand. Thank you again!

I think this story presses deeply on the guts of all of us who have children with special needs. I can't imagine the terror, shock, anger and betrayal this mother feels, and I can only understand some of the guilt she feels, too.

As Anonymous said, I, too, hope you feel some closure by helping all of us.

Louise, I wanted to say, too, that I truly appreciated your story, insights and suggestions on the TVO Panel. You are a wonderful advocate not only for children with special needs, but for parents too. We're all in this together and your presence on that panel was the connection that viewers like myself needed. You spoke of important issues and experiences that validated my own. And I thank you for that. ♥

Under the list of precautions I would add,

ask what therapists are intending to do and why.
if you disagree speak up straight away

When my son was younger (around 2ish) I did in fact let him paint himself and I helped (he was only wearing a nappy). It was good for my son, for proprioception, sense of touch and some other things. However, yes I would have to ask if this was an appropriate kind of play/therapy elsewhere.

When my son first started therapies he also cried and screamed. I had wanted him to be transitioned more gently, for me to be present until he was used to the staff. I was told my presence may make the process longer, but after the 4th session of Dimitri crying I spoke to the administrator and from that point was present in the sessions.

Sometimes it can be hard to speak up to the people with the "qualifications", especially when some may talk down to you(I know that from experience). I've always been a quiet person but over the past few years I've learnt how to make sure my voice is heard.

It is frightening when your child is non verbal and when we live in such a harsh world, there is nothing much I can add to that.

I'm so grateful that this mom shared this story. When things like this happen, we feel so victimized that we don't want to talk about it.

I have had two incidents where my son was mistreated (once put in a restraint, and once dragged roughly by his arms across a playground:

In the first instance, I never would have found out if I hadn't showed up early to pick Ben up at school. The school didn't document when it put children in a chair with straps over their hips and legs so they couldn't get up. Ben was 4 and wasn't following directions. And in the second instance, I wouldn't have found out that someone had mistreated my son if other staff at the school hadn't reported it.

I try to develop close relationships with adults in different settings (such as teachers and school assistants) in the hope that they can be a second pair of "eyes" for me and report back if something isn't right.

We have to keep talking about this because it is a reality and as parents, we have to be willing to do things like show up unannounced at school or daycare or wherever our child is to ensure they are safe.

I DO understand the fear of vulnerabilities in a non verbal child. I have a 13 year old son, who is non verbal, but his behavior and body language...he uses to express much.
We had to institutionalize him, due to financial exhaustion, and not being able to continue his therapy, as needed, through public schools.
We have had our horror stories...
I applaud the mother who spoke out. I have had to use my mother "lionness" energy to remember that these peole were parents too. Where my son is concerned, I will not sit down, shut up or accept their word, when I see other proof. I typically a nice, soft spoken woman, but our children "deserve!" and did not ask for any of this, nor did we. Those in these fields should be held accountable to appropriate behaviors themselves. We are all in this together, and through supporting our children, one another, and much much prayer...God's glory will be had.

To the Mom who shared this, I am so sorry you and your child went through this. I cant imagine. You have to be a voice for your child and especially when they are non verbal. If you can go to the therapy sessions I would insist on being in the room. My daughter received speech services and my mom would take her and she insisted on being in the room for all of them. the therapist said it was best she was not because it distracts the child. But she said no she will stay in the room to observe and I am so glad she did for a piece of mind. I would rather sit in the room quietly and be a bit of a distraction then wonder what is going on in the session.
Again I am sorry to the mom and child, this should not happen to anyone. It is good you said something. More parents should and being brave to do it is amazing. I wish the best for you and your son.

I'm not sure I understand...the photos were taken on your Iphone, so they were only for you. It would be different if they took naked photos and put them online, but they took the photos on your private camera. Why would they ask for the phone and give you the photos if they were doing something wrong?

I am a childcare worker and I often take photos of the children to show to their parents, particularly if the child is often upset, to show the parent the activities their child does. What is the problem with painting in a diaper? Small children make a huge mess painting, and it's easier to clean the child than the clothes. You are sexualising something innocent by saying it's inappropriate for a small child to be naked/in a diaper. Honestly you have overreacted.

Hi Marie -- Thanks for posting. It's good to have a childcare worker's perspective here.

To clarify -- the photos weren't taken on the mother's iPhone -- it was an iPhone that belonged to a staff person who worked at the centre.

I think the mom's reaction was to the sense of vulnerability of her child that someone would take photos -- including naked ones -- of a child who was crying/in distress and covered in paint.

I believe the CAS and police were involved in this case and felt the photos were inappropriate.

of course the childcare worker would see it that way !!!! bag! mistreatment changes our children, it takes their trust away and the fear stays for years. u make ur money and defend ur treatments,and the parents r left with the consequences of this "help". our girl was tied to a chair,held to the floor,ignored,and belittled.she was told to b quite every time she vocalised!!! thanks to workers like u my girl knows self-defence!!!and would eat someone like u alive!!

To "anonymous" re: " of course a child care worker ..."

You are absurd - if you want to treat care givers that way then it's a good thing there are so many unemployed and desperate people out there in the world. Only the starving are willing to deal with your rabid sensationalism for very long. You probably pay your hairstylist more per hour than those you entrust your child to. Most of the childcare professionals around here are earning half the living wage. Many of of us accept the financial situation in order to be in action and support for/ of those we know in our own homes and lives. Try being some positive contribution to the issue - maybe you'll find you don't need to post quasi -obscene, utterly irrational, functionally illiterate, rants any more. Way to many people use the developmental/emotional/physical differences and disabilities of their children to be nasty and superior to others. Your child, other parents, and me ( the grown up version of a child with disabilities) need you to snap out of it.