The Biter

I’m a social worker, I’m fond of talking about things no one else seems to want to talk about.  Maybe that’s because I use language to process my emotions, to make sense of my world. Or maybe I’m just a glutton for emotional punishment.  In any case, I’ve decided to take a leap and let you all in on what’s been going on in my autism world recently.

You’re probably thinking “Whoa, what an introduction… let me go refill my coffee cup before I dive into this…”  Or perhaps you’d rather jump on over to Big Daddy Autism or Autism Army Mom for “the lighter side” of the autism life and some comic relief.  Yeah, me too.  I mean, seriously, I would rather be writing about funny stuff my daughter says or dancing in my living room in fancy costumes.  But this is a topic that for me right now simply cannot wait.  I am struggling over here.  And I know other moms are too.  It’s the elephant in the living room and I’m gonna talk about it:

My child got violent.  Out of control, state-of-emergency violent.

Big.  Bad.  This-is-not-how-the-world-is-supposed-to-work, cry-out-loud-on-my-knees kinda violent.  He broke a school bus window with his head.  He got so destructive in his classroom, the teachers had to clear it out.  Both of those incidents resulted in 911 calls.  He has been hospitalized three times over the last two months.  He has been picked up and carried to padded rooms in psych facilities.  He has bitten, kicked, punched and spat at nurses, counselors, therapists and autism experts.  His destructive behavior has broken countless things, big and small, including several hearts…

We have tried various medications but none have worked.  We are now on a fourth medication (which so far seems to be helping to stabilize things– fingers crossed) but regardless of how well it works, the doctors have recommended

R-E-S-I-D-E-N-T-I-A-L   T-R-E-A-T-M-E-N-T

It took me a long time to get up the courage to face those words.  I am still hopeful that residential treatment for Alex will mean a short-term stay at a residential facility, and that he will return home soon to me and his dad.  I am not ready to give up that vision– in fact, I’ll tell you flat out that I believe in miracles of all sorts and that my son’s autism story does NOT end here, especially not with facility-based treatment.

So by this point I am betting you are silent.  If you are a teacher or mother like me– one living in this “alternate” world of challenges– you probably feel a pang of empathy and saddness.  If you are not connected to autism or my family, perhaps you are curious about this part of our journey.  Or perhaps you are thinking there is someone you know who “needs to read this,” a person in a similar situation to mine.

But I am not writing to inspire anyone.  I write because I need to say out loud, “My child is the biter.”  I remember when Alex entered preschool and I was new to the world of stay-at-home moms.  Other parents and I would convene outside the school after morning drop-off and talk about mom stuff.  Mostly light funny stories, or sharing the stress of balancing family and work and life.  Once in a while someone would have an anecdote about another child or parent– usually a person no one in the group knew well– and there would be whispers about a behavior, a parenting style, an interaction at school.  I would walk away thinking to myself, “I’m glad my son is not the biter.”

Well guess what folks.  My son *is* the biter.  He is the child I am raising.  And guess what else?  His violence and destruction, this current struggle to remain optimistic about his future and to find my way back up after I’ve been knocked down (literally and figuratively), does not change all that I love about him or his innate potential.  He is still the miracle child of my six-word memoir, the sensitive special child I will always believe in, against all odds.  I give you this ramble today because I want you to know how important it is to me that the world not give up on my child– or on me.  I want to talk about the elephant in the room because I understand better now what happens when a child is “the biter.”

We all need to feel some sense of control over our worlds and our futures.  To think that we don’t truly know what tomorrow holds, or that the actions we take and the choices we make will not necessarily guarantee us safety and security, or protect us from what frightens us most is too much for the average psyche to handle.  So we whisper about it and thank the stars for the narrow escape we just made from that particular heartache.  We talk about “warrior moms” and applaud people who find the “cures” for autism, we try remedy after remedy to balance our lives so we can get through the days of this journey.  But sometimes, despite all this, we find ourselves on yet again a different path.  I had found hope, I had a good plan and the right helpers, and we were on track.  Then the scary, violent stuff came.

Now I’m going down a new road– and no one seems to be talking about it without whispering.  But I am an average mother with a son who is almost as big as I am and soon to begin puberty, a newly single parent who is also raising a typical first-grader.  I know from basic statistics that I cannot possibly be the only parent in my position, given the current divorce rate and the fact that 3 out of 4 children with autism are male.  And I am betting there are many other mothers in the world who are right at this moment surrounded by people and experts and “solutions,” but who are still silently screaming at the same crazy situation I am.

So there you go, I brought it up.  Check out that elephant folks– it’s a big one.  Powerful animal, wrinkly and gray, it could crush you if you’re not aware of where it’s standing.  Oops– now it’s eating the candies out of the dish on your coffee table.  Someone please step up and talk to me about it.

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27 Comments (+add yours?)

  1. Rachel
    Oct 30, 2011 @ 15:25:36

    Glad you are breaking the silence. There is strength and love to be found in community and dialogue.

    I wish I had some answers for you, but just know that you guys are in my thoughts often. Sending you so much love, beautiful mama.

    Reply

  2. Dearna
    Oct 30, 2011 @ 17:49:55

    This one scares me. As the mother of a boy on the spectrum who is only 6 I wonder what the future holds, when hormones and the changes that age brings begin to happen.And never ever stop believing in him.

    Reply

    • cathykal
      Oct 31, 2011 @ 12:10:30

      Thanks for your kind words. I think we mothers are wired to always believe, which is a good thing when the challenges come. I admit, it is scary, but I have also found unexpected gifts in this process– and I’ll keep you posted on the outcomes. All best wishes to you & your little guy!

      Reply

  3. susan
    Oct 30, 2011 @ 20:30:59

    How can I help you, Cath?????

    Reply

  4. rvschwoyer
    Oct 31, 2011 @ 12:33:41

    Thank you for sharing! I have worked with families where this becomes the heartwrenching reality and no we cannot silver lining/spiritualize it away…it’s real and it hurts…yet we can uplift one another and find ways to nurture the elephant(s) in the room. Blessings and Peace to you, Alex and the family!

    Reply

  5. Amy Mendelsohn
    Oct 31, 2011 @ 12:40:49

    Oh Cat…..you write so well about something that I know is heartbreaking, and I wish there was a “magic button” to fix it. But that wishing won’t fix it, and all we can do is send you our love and strength. He is an amazing (not so) little boy, and I believe somehow there will be a way to help him.

    Reply

  6. Suzanne
    Oct 31, 2011 @ 18:23:29

    “I wish there was a “magic button” to fix it.” Amy
    I ditto that. Wishing it were easier but also knowing you have a deep abiding strength inside and a love that doesn’t quit. I remember when TIm was asked to meditate between parents from the church nursery school about biting incidents. IT was hard and soo important to remind everyone that a person is not their behavior. And their behavior does not define them. We are all precious and we all have different ways of being the world. Your writing is so important, thanks for this.

    Reply

  7. Katy Shelkowitz
    Oct 31, 2011 @ 18:35:26

    It’s hard having the “biter”. I have the hair puller. I know how your heart breaks every time Alex gets lost. My Max gets lost too – sometimes so violent that I have to drag him to his bedroom with the padded walls and lock him in, in the hope that he doesn’t hurt himself. I feel guilt over locking him in there – it feels like I am abandoning him when he needs me most – but he is nearing 70 pounds and I am just not strong enough to hold on to him until he calms down. I have to protect Hannah as well and it seems she is always second on his “hit” parade. i sit on the floor outside his bedroom door in tears waiting for the storm to pass, sometimes hours at a time. The whole time he is pounding on the walls, screaming and throwing himself at the walls. Then after it passes and it becomes quiet, I take a deep breath and pray he isn’t hurt, I open the door and he looks at me with his angelic face and says “I all done now…I sorry”. My heart melts all over again and once again – just like you and Alex, he is my perfect little miracle wrapping his little arms around my neck. I guess the point of my ramble is this…we can’t give up on our little miracles. They have amazing things ahead of them and it’s our job to help them on that path. No matter how bumpy and frightening that path is. You are a good mom Cathy…I hope I am too. Just know you aren’t alone and I’m sure you know that already….

    Love,
    Katy

    Reply

    • cathykal
      Nov 01, 2011 @ 16:02:03

      Katy, I feel your tears and I am with you. You are a good mom, too– I know that for sure. The more we talk and share, the easier it will become for us and the many other parents out there to navigate these crazy situations. Sending love. xoxo

      Reply

  8. Mimzy Wimzy
    Nov 01, 2011 @ 09:13:40

    I have never held back from speaking out loud about my children’s behaviors & mental health diagnosis. It helps no body, including the child, if you try to hide it under the rug or in the closet. Welcome to my world of ADHD, depression, bi-polar daughter (now 19 & pregnant, unmedicated. previously hospitalized twice), ADHD, Apergers son (now 17 & doing much better than when he was younger). I also have young cousins who were adopted through foster care. Due to their past their present is a scary place. One is in residential treatment for the foreseeable future. Another was just in a mental hospital for a brief time & we are not blind to the fact that he could have to return. My Aunt also raised a biological son who is bi-polar. (not to mention all the other special needs she has dealt with over the years through foster care)
    You are not alone.

    Reply

  9. Ashley
    Nov 01, 2011 @ 15:17:01

    Hi Cathy –

    http://www.necc.org/ << that's where I work, the New England Center for Children. Truly one of the best residential programs in the country. If you have any questions about what they are like first hand, I am more than happy to give you some honest insight. Always thinking of you guys..

    Reply

  10. bbsmum
    Nov 14, 2011 @ 15:29:32

    You are not alone. When I confronted that particular elephant in my own room I found Rhonda’s blog http://pugariffic.blogspot.com/ very helpful, just knowing that there are others out there. Her latest posts show glimmers of light at the end of the tunnel. Stay strong, though that’s easier said than done ((hugs))

    Reply

  11. Rhonda Logan (@pugariffic73)
    Nov 29, 2011 @ 10:53:08

    This post brought back SO many memories 😦

    Tommy’s a biter to say the least. He’s a RAGER. He IS bigger than me. The last one, put me in the hospital. (we were home alone) I too, had residential recommended. I refused to accept it. Not because Im a glutton for punishment. Not because I’m in denial. For us, it was a different reason. School was his stresser. His neuro kept piling on the meds, one on top of another.. until he had a psychotic breakdown.

    Long story short.. he’s better. AND STILL AT HOME. We homeschool him now. He was put into a psych facility where a psychiatrist was able to look at his meds and made adjustments. We’ve not had an ‘incident’ since June. We never have let our guard down by any sense of the term. We KNOW what he’s capable of. But for the first time in 17 years, we HAVE a family life! He’s actually HAPPY. He laughs. He participates. He vocalizes when things are too much and he needs to be alone.

    My trick? I stopped listening to the “professionals” and started listening to my son.
    These “professionals” have been getting paid a total of $82K a year for his school and esy for 5 1/2 years. (they have a residential facility on side, which they just EXPANDED- go figure). When I chose to NOT accept their ‘recommendation’ to have him LIVE at the place that caused him so much STRESS and RAGE… i’ve never heard back from them. Ever. During the meeting of trying to convince me that “this is the best thing for Tommy” they were telling me how much they LOVE him, how he’s become part over all of their families. How much he means to each and every one of them. It’s been 5 months, and not ONE person has called, emailed, stopped by, sent smoke signals!!!!!!!!!!!!!!! to even see how he is doing.

    He was nothing more than a dollar sign to them. They’re all dead to me now. And, it doesn’t matter. Because I have my boy back. 🙂

    I saw that BBSMUM last posted here. I miss her posts. Think about her so much. Hope things with her are doing … ok, since leaving twitter. If she’s reading this.. I’m thinking about you and BB sweetie! ((hugs))

    Reply

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  16. Normal is a Dryer Setting
    Mar 12, 2012 @ 17:48:53

    Well I guess we ARE living parallel lives. As sad as this all is, I feel comfort that I’m not the only one who called 911 more times than I can count, and dealt with this kind of violence in my child. It’s like this deep, dark secret not addressed much in the autism community. I am not alone. You are not alone. If nothing else, we can row the leaky boat together. I’m so glad to ‘meet’ you. I hope you don’t mind but I’ve put a link to your blog on my site.

    (Hugs of solidarity)

    Amy

    Reply

    • cathykal
      Mar 12, 2012 @ 18:06:28

      Hi Amy,
      You bring tears to my eyes. You’re right, neither one of us is alone– and I know there are so many other moms out there in the same leaky boat. I think the trick is staying afloat long enough to connect. I wanna chat with you on so many levels, I think we’ve got a ton of resources & inspiration to share. Glad I found you 🙂

      Hugs back,
      Cathy

      Reply

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  19. Rebecca
    Oct 01, 2012 @ 22:30:02

    Hi Kathy,
    I truly believe i stumbled upon this for a reason.
    My son is 14yrs old & in 14yrs he has been a very mellow kid, never gave me a problem, you wldn’t even know he was in the house most times.
    as of recent My son has displayed very compulsive behaviors & I noticed that he had such an attachment to his Ipad. The rule was as long as he did his H.w. he cld have the Ipad, but then i noticed it was becoming waaay to much. He was stiming on it excessively.
    I am aware that it was all my fault ,so I decided instead of taking it away,i’ll give him a 1hr a day on it.
    What a disaster he screamed at the top of his lungs & I truly was at a loss.
    I stuck to my guns, but then I noticed him following me & pushing up on me. I really didn’t know what to do.
    I’ve worked with oppositional children for so many yrs & this time i just didn’t know what to do!
    Anyway as he figures out that i’m not giving in he then he slaps me on my back. I was shocked!!! scared, I was lost.
    I reacted by pushing him & he fell to the floor… I had never hurt my son & to see him on the floor b/c of what i did killed me.
    He got up & I sent him to his room.
    I was just so angry, but I have to say that now i’m afraid. I don’t know what to expect anymore.
    I told my husband & he basically said “Don’t ever let him do that again”.Really?!!
    It hasn’t happen again but it also hasn’t been the same,
    i’m not sure if that’s good or bad, but when I read your blog I felt your pain & now I know that i’m not alone.
    Thank you for that. Big hugs & loads of blessings to you.

    Rebecca

    Reply

    • cathykal
      Oct 03, 2012 @ 06:57:50

      Hi Rebecca, thanks for sharing your story! You are definitely not alone, there are many parents in similar situations, and sometimes the journey we’re on winds in unexpected directions, that’s for sure. I’m sending you good thoughts.

      And I have some encouraging news to report– after nearly nine months of residential treatment, I’m finally seeing a light at the end of the tunnel. For the first time in a long time, I’m thinking it may be sooner rather than later that Alex can come home. (“Sooner” is relative of course… but still, there’s hope.)

      All best wishes to you & your family,
      Cathy

      Reply

  20. Rebecca
    Oct 02, 2012 @ 23:59:35

    🙂

    Reply

  21. Lisa
    Jul 03, 2013 @ 09:24:56

    Wow.. IM NOT FREAKING ALONE!!!!!! PLease tell me…how old is your son? Thank you for commenting on my blog…So far I have found three moms… Thank goodness for the internet.. seriously. I am sorry for your struggles but i am more inclined to ask questions like how was it covered? How old is your son? How did it go or is it going? Please divulge….I know about the elephant.. I am out of the closet with mine too.. 🙂

    Reply

    • cathykal
      Jul 03, 2013 @ 09:59:07

      You are definitely not alone! And your courage to share your story so honestly is like a magnet for a whole bunch of us autism moms 🙂 My son is now 12, he is taller than I am, and his residential treatment is covered by his secondary insurance. And I will email you privately so we can chat more. Thanks for acknowledging the elephant– he’s a big one, no?

      Reply

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