Susan's Blog

Saturday, July 16, 2016

First Time Writing About It

I have to talk about it. Now. I am on the plane going home from the Autism Society of America Conference. There I presented a breakout workshop on Autism Adulthood: Strategies and Insights for a Fulfilling Life.

But I had to tell them. The end of my book is not written yet, after all.

On July 3 we were headed to a friend’s holiday party and I called Nat upstairs to come put on a new, festive shirt. He pulled his shirt off and there, screaming at me from his thin white chest, was a big yellow bruise. Fist-sized. I screamed for Ned. I don’t know how I formed the words but I did. “Someone has hurt Nat,” I shouted. I looked again, horrified, nauseated at what I was seeing. For there was more. There were faint fingerlike bruises on his shoulders, and more, fainter, yellow circular bruises on his upper arms.

Several hours later the Emergency Room doctor announced that Nat has three fractured ribs, and one more older healed rib.

It has taken me this long to be able to allow the rage, the pain, the hurt for my sweet son, to bubble up like lava from my roiling gut. This anger, anguish, is old, deep as the Earth’s core. And it will never go out.

An investigation is taking place. I have my suspicions. But we have already been told that we may never know what happened. This is the way it goes when someone of limited expressive ability gets hurt. Nat has trouble making himself understood. I may be the best person at understanding him at all, and I am lost at times. I have to rely on all my senses to determine if he is sick or sad.

I guess I now need ESP as well.

What kind of a beast does this to a sweet, well-meaning young man? Nat is a white ray of sun. How can someone want to hurt the sun? It’s just warm and reliable. Nat is warm and reliable, you can count on him. You ask him to do something and he will try his damnedest to do it. I believe that he does not want to be shut off from others because of noisy language. And so my heart has always hurt for him and my arms have always tried to connect him to all of us. He’s not perfect, but his heart is good.

What did he do? Self-stim around someone who couldn’t deal with it? Did he laugh loudly in their face? These are things that he resorts to when he needs to express something, it’s just that I’m not sure what. I do know his self-talk is regular words stretched out beyond recognition. They are the equivalent of a whisper, because they are Nat’s way of telling you without you being able to hear it very well. And the loud laughing? He is blowing off some steam, he is feeling something very strong. Maybe something is funny. Maybe not. But he’s got to do it sometimes. Other times he tries to control it, he tells me, “You be calm.”

I will be calm because what else can I do? I have searched for clues, looked into areas of his life away from me, probed for secrets. I still cannot disclose any specifics because of the investigation.

This agonizing mother cannot simply roar and gnash teeth. I need to be able to bite. So I have talked to the Disability Law Center in downtown Boston. They will take on my case.

At best — best! — Nat hurt himself by accident and people who were supposed to take care of him in our place neglected him, or didn’t notice. And when he was home on the weekends, because he is so independent with dressing, showering, we did not see either.

But let’s not forget: this did not happen just once. Nat also has an older, healed rib.

 

We have pulled him out of all of his settings and he is living at home with us again for the time being. Typical of Nat, he is in good spirits. I have been doing all I can to surround him with love, food, fun. Ned takes him on their long walks. Ben stayed with him when we had to meet with the team. Max came up just to be there. My sister drove 5 hours to stay overnight to see Nat, to take care of him and me. To be sure that her Godson is okay. My parents, Ned’s family, all our friends have been strong glorious walls of support for us.

But still. I don’t know how I will ever trust anyone again when what I want to do is rip heads off people.

It takes a lot of force to break ribs. But it takes one glance at a sickly yellow bruise to break hearts.

43 comments

Wow, this is really upsetting. I’m so sorry to hear. How long do the doctors think this has been going on? Is anyone else in his group home also injured? Could it be another resident? I think you’ll get to the bottom of it. Hugs.

— added by Karen fessel on Saturday, July 16, 2016 at 8:10 pm

Susan, I am in tears reading this. I have spent a lot of time with Nat. He is a ray of sunshine!!
I happened to be up at the high school last week picking up Aidan from basketball. I saw softball practice going on so I went over to say hello. I saw Nat and said “Hi Nat” he said “hi”. I haven’t seen him in awhile so it warmed my heart that he said hi. How anyone could hurt him is beyond me. Please know that you Nat, Ned and your family are in my heart and in my prayers. If you need to talk or anything please don’t hesitate to call. I am so sorry this has happened. Words can’t express my anger for the person/persons involved.

— added by Dyanne on Saturday, July 16, 2016 at 8:14 pm

I am so sorry .your last sentence speaks volumes…..

— added by Lisa on Saturday, July 16, 2016 at 9:03 pm

Susan and Ned, I am so very sorry this has happened. It is my worst nightmare, as I am sure it is yours. Please know that I hold you both and Nat in my nightly prayers. Penny

— added by Penny on Saturday, July 16, 2016 at 9:40 pm

My heart is breaking for you. My heart is full of fear for my own son after reading this after reading your book and knowing you THOUGHT you’d found a safe place for him. I’m so sorry. Please keep us posted.

— added by Susan on Saturday, July 16, 2016 at 9:49 pm

My heart breaks….. Who are the people who can hurt
The beautiful souls like Nat. Truly lost a piece of my
Heart with this.

— added by Erin on Saturday, July 16, 2016 at 9:51 pm

That’s horrifying. I’m so sorry you and your family are having to fight this battle. I pray the truth comes out and the person is held responsible. You’ll all find strength in each other. Bless you and bless your sweet son.

— added by Colleen on Saturday, July 16, 2016 at 9:54 pm

((Arms all around)). How may I support you, yours? Please. Your child is MY child. (I’m just so sorry and so angry).

— added by Denise Fabio on Saturday, July 16, 2016 at 10:05 pm

Susan, this is all so distressing. I am so sorry for Nat, and for you and the rest of your family. And I’m filled with rage that this happened to him. I hope that the investigation yields some answers, and that those responsible are held accountable.

— added by Jennifer on Saturday, July 16, 2016 at 10:09 pm

Holy Hannah, sending so much love and hugs your way. let me know if there is anything else we can do.

— added by Joeymom on Sunday, July 17, 2016 at 12:00 am

I’m not a praying person but I hope you have the strength and courage to survive this. You don’t have a choice but I don’t want this to crush you. You do so much for many of us; parents of autistic young adults. Your family is like mine, unlimited love and support. So grateful for that, for all of you. xo

— added by DeeDee on Sunday, July 17, 2016 at 12:09 am

Susan-I don’t have the words to express all the thoughts going through my head as I read this, but please know I will stand with you and your family and work together to bring accountability and improvements to this woefully inadequate system. Our boys deserve much better.

— added by Cathy on Sunday, July 17, 2016 at 12:22 am

This makes me cry. There is a special place in Hell for those who harm children & the elderly. Just my opinion. I am so sorry.

— added by Susan on Sunday, July 17, 2016 at 12:48 am

I want to appologize on behalf of all care providers. I care for my adult daughter with Autism et al, and I can not fathom what could have caused such injury to your son. My other child is 6’1″ and 300lbs of muscle and has adhd. He has gotten a little rough on accident or my daughter can get physical, but even holds to prevent more violence dont cause broken bones. As a Mom, I am horrified. I pray that the investigation finds the person at fault and fires them and or brings charges against them. Even in the worst of circumstances, broken bones or physical violence is never the answer.

— added by Jennifer Warden on Sunday, July 17, 2016 at 2:24 am

One person who wants to hurt the sun is too many.

And too many people want to hurt the sun especially at this time of the year.

Thinking of and feeling for and with Nat now.

He is at home with you.

One ugly bruise like a yellow egg…

— added by Adelaide Dupont on Sunday, July 17, 2016 at 4:26 am

Oh my G-d Oh my G-d. My visceral reaction; nausea, horror, is because our kids are OUR kids. And whoever did this to him ( could there be more than one whoever?!) did not even stop to wonder if super-advocate YOU, with what you have shared to the world about Nat, would rise up like a lion and tell the world that yes, WE have a very big problem, hat THIS WILL NOT STAND? This is my nightmare, my heart is breaking for Nat, for you and your whole family, for my daughter, for all the families I know who have slowly entrusted some of the care and oversight of our precious vulnerable children to others who are supposed to understand?
Sending much love, Sue, and holding your family in my heart.

— added by Melinda on Sunday, July 17, 2016 at 6:44 am

…sigh. No, no, no!

Just no. (((HUGS)))

How much more light and love is it gonna take?

— added by Dawn (Timmy's mom) on Sunday, July 17, 2016 at 8:02 am

Oh Susan, this is a worst fear for so many families. I am so sorry it is your reality. I hope and pray that the truth can be learned, and justice can be implemented. So very sorry for you and your family to have this, but more so for Nat, who likely doesn’t even know how wrong it is. My thoughts and prayers for you and your family as you move through this chapter. Wondering how one ever trusts our expressively challenged, precious ones to a stranger??. Thank you for sharing this.
Best,
Lana

— added by Lana on Sunday, July 17, 2016 at 8:34 am

My greatest fears for my non-verbal son were realized in your post. When we moved to a new area, I couldn’t bring myself to send Ryan to school because I am so afraid at what could happen to him–my son is not always a ray of sunshine and can require a lot of patience. I am so, so sorry and angry that some sick individual could hurt Nat.

— added by Janet Edghill on Sunday, July 17, 2016 at 9:12 am

Oh, Susan. Ugh. Ugh!!! It is even worse than I thought when you first mentioned! I’ve been reading your books; following your blog etc, soon after my son was diagnosed- he’s 20 now. You’ve helped me through so much. I hope that all of us can help you thru this. Somehow send all our intentions over the Internet. I know this feeling you have; the anger and sadness. The lost hope in humanity even; how could anyone do this? Or allow this? My son is a bit more verbal, but refuses to acknowledge pain- emotional or physical. We too have had incidences; had to piece them together like detectives, often well after they’ve happened. Nothing ever this bad; but it still fills you with a heightened swirl of fear, anger, dread as you discover each part. Awful. Please take care of you as well as you go thru this. Your own body and spirit will feel traumatized. You have such a wonderful family; rely on them. Remember the good people in your sons life; it will help. Sending you my best…

— added by Susan on Sunday, July 17, 2016 at 9:52 am

So sorry Susan. I completely understand. We have learned of a few times where this happened to my daughter. I wonder how often it’s happened that I don’t know about.. it’s clear to me that she suffers from PTSD because of the traumatic events she has endured. But since she cannot describe the flashbacks, they will not diagnose her, and it goes untreated.
We are entering adulthood in one month, trying to find staff we can trust is a near impossible task. Like when she was a toddler I will need to be with her all the time until trust can be established— if possible.

— added by Barb Zimmerman on Sunday, July 17, 2016 at 10:25 am

My Mother keeps telling me how I am going to put my kid in care as soon as he’s old enough. My response, not a chance in…. what happened to Nat scares me that it will happen to mine. I suspect, like my MIL, she expects me to cater to her instead.

WOW!!! There are no words. My severe ASD’s high school teacher had the Health Nurse come at the end of this term to his class – 2 days (HF Dev class – much more verbal than mine but academically mine’s more ahead) just for this problem. Every year she comes, it’s extremely important to his teacher and the parents. Every year to do sex ed, and abuse prevention. It’s all you can do and hope it helps.

Hope he’s doing well. Finger’s crossed you win your case.

— added by farmwifetwo on Sunday, July 17, 2016 at 10:31 am

Oh Susan this is just horrific. I am so sorry for Nat and for all of your family. It must be heart wrenching for all of you. Whoever the piece of garbage is that did this to him needs to be held accountable. I don’t buy for a second, if that is what the people who did this to him are trying to allude to, that Nat did this to himself. No way. He is not that self injurious from what you have written. Someone had to have done this on him in order to break ribs and this has happened more than once since he has an old broken rib. That takes a lot of force that I can not believe Nat would have or could have done to himself. Every parent/family member of a disabled person is behind you 100% in order to get justice for Nat.

Also, I’m not sure if you have ever read Kim Oakley’s blog. She has a severe autistic son, Jamie, who is around Nat’s age and lives in CA. He was abused by caregivers a few years back and they were thankfully held accountable in a court of law. I truly hope the vile creep (s) who did this to Nat are is held accountable as well.

— added by Chris on Sunday, July 17, 2016 at 10:49 am

I am terribly sorry to read about this. I just don’t know how some people live with themselves….cannot imagine. Blessings to Nat and your family.

— added by Leah on Sunday, July 17, 2016 at 12:49 pm

This breaks my heart I don’t know how someone could do something so horrible to someone so sweet . God bless you and your son …

— added by Fran MacMullett on Sunday, July 17, 2016 at 12:55 pm

The pain in your heart intertwined by the anger. I’m giving you a virtual hug. I’m scared of Andrew turning 22- when there should be safe spaces and places, there aren’t. My boy can tlk but can’t report his day at 17. I don’t know if 22 will be much different. Thank you for sharing and for going after the truth. Gentle hugs to all of you.

— added by Laurel on Sunday, July 17, 2016 at 1:41 pm

Heart is breaking for Nat and for you; wish I had an answer, wish I knew what would drive people to harm someone so vulnerable; so very glad there are people who will be there for both him and you during this dark period; all I can offer is prayers — the only thing that’s gotten my family through our dark days; prayers for continued support, for resolution of Nat’s placement, for the evil surrounding and hurting him to be removed;

— added by Allisons Mom on Sunday, July 17, 2016 at 2:39 pm

My heart breaks for your Nat. I too am filled with horror, anger, and profound sadness. May you know that your son and family are not alone. Sending thoughts of kindness and peace to Nat and your family.

— added by Cheairs on Sunday, July 17, 2016 at 2:46 pm

Your post hit me hard. I cannot imagine the confusion and pain your boy experienced. I get your need to bit ofF heads too. I pray you get that chance and the animal that hurt your sweet guy is caught and punished.

— added by Crissie on Sunday, July 17, 2016 at 2:53 pm

I can only imagine the pain in your heart intertwined with the anger. I’m scared of my Boy turning 22- there should be safe spaces and places, many aren’t. My boy *can* talk but can’t report his day at 17. I don’t know if 22 will be much different. Why would anyone hurt Nat? Because perhaps they thought they would get away with it. I’m sorry.. but glad you are getting angry and have the DLC and pray the investigation will uncover who hurt your precious boy.

— added by Laurel on Sunday, July 17, 2016 at 3:50 pm

Dear Susan and Ned, Sheila and I are so sorry to hear about what has happened to Nat. No one is safe in a world where monsters victimize the most innocent.Our thoughts and prayers go out to you so the healing can begin and justice will be served.We are here for you in total support to help in any way possible.
Sincerely Bob, Sheila, Liz and Sam.

— added by suwinski on Sunday, July 17, 2016 at 5:05 pm

I am crushed for you all.

— added by Suzette on Sunday, July 17, 2016 at 9:55 pm

Susan,
I am so very sorry. I do not have words to express how this news made me feel. God Bless you and your whole family.
Linda

— added by Linda Acuff on Sunday, July 17, 2016 at 11:19 pm

So sorry to hear this.I hope they find the monster who hurt Nat and has shaken your trust and faith in human goodness. Keeping you all in my thoughts and prayers.

— added by Ann on Monday, July 18, 2016 at 12:07 am

Susan and Ned,

I am so sorry to hear this devastating news. I can’t imagine what this must be like for you and your family, let alone how Nat feels. . You are such an advocate for others, may your work to investigate this stop others from being victim to abuse.
Our hearts are with you sending love and compassion.

Nancy and Randy

— added by Nancy on Monday, July 18, 2016 at 12:32 pm

Nothing to add but ditto to all that already been said and also, I am now nauseous.

— added by Ohio Mom on Monday, July 18, 2016 at 4:33 pm

None should ever have to bear this kind of pain – not him, not you, not your immediate extended family. No one. But there it is, and we have seen it or heard about it before from others. Everything we work for to make our kids independent is undermined by our increasingly untrustworthy world. I hope you get justice, I hope you find peace, I hope you build happiness in any way you can. You are brave, you are strong, you will prevail.

— added by Sarah on Monday, July 18, 2016 at 4:47 pm

Dear Susan
I’m so sorry. I’m thinking of Nat and your family and wishing all the best. I hope that the person responsible is held accountable

— added by Sharon on Tuesday, July 19, 2016 at 1:07 am

I don’t know what to say other than I am so very sorry.

— added by Susan on Thursday, July 21, 2016 at 6:35 am

Sue and Ned:
Sending you and your family love. May you find a way to see light and hope again. With love, Ted and Liz

— added by Liz deBeer on Tuesday, July 26, 2016 at 10:11 pm

Just read your latest book, and now your blog…..I’m speechless. So very sorry for you and your family.

— added by Deb on Thursday, August 4, 2016 at 12:46 pm

I have begun to think that caregivers should have to wear body cameras like the police are being required to wear now. This would help some at least. Too many things like this are happening, to our special needs loved ones as well as vulnerable people in nursing homes, etc. It’s got to stop. God help us.

— added by Amylisa on Thursday, August 11, 2016 at 8:51 am

Nooooo Susan!
No!
What the ____!
I. Can’t. Even-process this.
No court could ever sentence this person(s)
Long enough or hard enough.

I want to say things not fit for a blog.
I want to put my head in the sand and just not know.
I want to hug you.
I weep with such pain for Nat.
May the investigation reveal that which was done in the shadows.
May you, Nat and your family hold tight through this unwanted and torrid course.
Go thee brave and at all costs, stay out of jail.
That would have to be my daily goal, just stay out of jail…

— added by Lauri on Tuesday, September 13, 2016 at 11:27 pm