Thursday, June 9, 2011

Stimming makes me cry

Feeding Alanna breakfast ended with me in tears. No matter what I did, how many times I called her name, tickled her, squeezed her hand, played airplane with the spoon, etc.... she would not make eye contact and she would not stop stimming. Hitting herself in the head, growling, hitting herself under the chin, flapping her hands, staring out of the corner of her eyes at her hand.
Let me rewind to Gotcha Day. When they handed her to me, she would not look at me, she simply diverted her eyes up, to the side, etc... anywhere except to me. She hit herself in the head and growled. "She's acting like she's autistic" I thought in my head. It scared me, I'm not going to lye. And as Serge asked me if we wanted to adopt her, I said yes, with a huge smile, when in my mind I was thinking, "I don't know, is she in there?" Maybe that behavior is normal for a 16 month old with Down Syndrome.
Whew, this is hard to type about the child I love so dearly, the child I can barely stand to be away from for several hours, the child who rarely ever sits in a stroller because I love to carry her around in my arms, close to me.
That night I layed in bed, exhausted from the crazy ride to our region and our 10 minute meeting with our new daughter. I remember thinking, I can't do this, we will just tell Serge we can't do this, we will just go home, she is so young and cute, she will get adopted by another family for sure, a family more equipped to deal with autism. Why did God even lead us to adopt such a young child, we wanted to adopt a 3-4 year old. We could have saved a child from being sent to the institution. I prayed and fell asleep.
The next morning I felt better, and of course after another visit with her I was in love, she made eye contact, played with toys, etc... She was still stimming and growling, but she was certainly in there. And those behaviors aren't unusual for a child who has spent their lives in an orphanage with no stimulation.
The stimming seemed to get better for awhile not as much hitting herself in the head, when we met her she had rough spots on her head from hitting herself so much. But she has added more stimming behaviors that we didn't see before.
She hits herself under her chin with the tips of her fingers
She flaps her fingers
She smacks herself hard in the face, I hear this when she wakes up in the morning and when she is trying to go to sleep at night
She rocks violently back and forth in her exersaucer
She never used to stim violently when I layed her down to bed. Now she does, and she sits up and rocks and hits her head on the crib, and she gets up on all fours and rocks really hard back and forth. I liked it much more when she layed there and sucked her thumb till she fell asleep. I just recently discovered she was stimming to go to sleep. From now on I will be holding her till she goes to sleep then laying her down.
It took a long time for her to respond to her name, but not only her name and sound being made would not make her turn. Yes, we do have a hearing test scheduled.
Now she does turn once in a while when we say her name. Sometimes not at all and sometimes only after we say it a couple times.
She is smart. She will not clap on her own, but she will pick up my hands and put them together so I will clap. She plays Peek-a-Boo, but she has no reaction to it, but I assume she likes it, because she puts things like birp clothes or shirts over her head to play. She never laughs in response to something, only to things physical like tickling.
I'm describing all this so I can input from other parents.

When we take her places, of course the stimming gets worse, because there's so much more going sensory input. I've noticed it makes people uncomfortable. They stare. Sometimes they ask why she is hitting herself, or growling. They will say hi but she diverts her eyes, and pull back her hand when they touch her. So they never ask to hold her. People have said things to her like "why are staring at your hand" "what are you staring at" "she must see something we don't", etc....

Yesterday was a good day, we had Drs appts to go to and she did not stim nearly as much as she usually does when we are out. But she is making up for it this morning. After feeding her breakfast I put her on the floor in the living room and I went into the kitchen to cry and to make my coffee. When I looked in on her she was rocking back and forth hitting herself over, and over, and over. I called her name, but of course she was in her own little world.
When I sat down on the couch with my coffee she crawled over and put her hands up to be picked up.
We work with her face to face for hours everyday. Playing, singing songs, doing hand motions. I have some deep massage I've been doing, which she normally does not stim through, this morning she did though.
I don't know if she's autistic. But it scares me so much, why, because I don't want her to be stuck inside herself. Noone wants their child to not respond to them.


  1. I don't have any advice, as we are going through some of the same things. I just wanted to say thank you for writing the truth and I hope someone else will have answers.

  2. Cara... I know you don't want to hear this, and I hope and pray that I'm wrong, but those are autistic behaviors (my oldest son is autistic). As scary as it is to learn, or to think of it ias a possibility, it's not a horrible thing. Will it take work and patience and time and lots of love to pull her out of herself? OH YEAH!! Will it happen overnight? NO WAY! It will happen as you have seen... a little at a time... Love her, pray for the situation, and take comfort in knowing that she is your daughter, the one that God created for you, and led you to finding. He will give you what you need to help her. If you need anything, PLEASE LET ME KNOW!!! Love ya girlie!! Mel (

  3. I am so sorry this is so hard...

    I can only tell you my oldest bio child (breastfed until 12 months) had many "autistic symptoms" as a toddler/preschooler...

    the hand flapping, hard time with eye contact, repetitive jumping, repetitive speech (would answer questions with quotes from TV shows), toe-walking, could not "read" other kids and make appropriate comments, would talk forever until everyone else got bored and would not see the "cues" that he should stop...

    he is now almost 19 years old and just graduated high school with his gold NHS tassles, he has a learning disability (auditory processing disorder) and still has some autistic/aspergers type symptoms...but is heading to college next year and is an amazing young man...

    the symptoms got better and better as he got older and got treatment at school and we worked at home ("let's see your eyes Brent" and "sweetie remember to stop and let the other child take a turn to talk")...

    he is not totally "normal" and I could not care less, this is how God made him...

    he is the hardest working boy I know and he want to be a special ed teacher for young children because he remembers how hard it was to feel "stupid" and "lost" at school (he could not read at all until 6th grade)...

    this is the hardest it will ever be...

    I will pray for you and your little sweetie my dear!!


  4. Oh you have me in tears! Autism is VERY scary to me so I certainly won't minimize it. However I will tell you that a got to nanny a little boy who has Autism for two years, and we found amazing ways to connect. I'll also share that my brother, Brad (37, DS) has ALWAYS stimmed. He used to smack his hands together, and we managed to transition him over time to a toothbrush (not the one he uses to brush his teeth) which he now gently taps against his hand.

    I don't know what is going on with your beautiful little girl. But I know God loves her and made her just the way she is.

    And God loves you, made you just as you are, and has a beautiful reason for bringing you two together.

    Brooke Annessa

  5. I wish I had some great words of wisdom for you, but I must rely on my motto-God never gives you any more than youcanhandle.. You must be just the family she needed, and I believe, in time, she will flourish. Do u read I know she has adopted many times and faced many challenges with her kiddos, she may be able to offer some advice. In the meantime, check with your pediatrician, and I will keep you in my prayers

  6. I am certainly no professional, but it could be her way of coping with the change. It is very traumatic! Darya stimmed quite a bit when we got home. She was easily overstimulated and often would go to her bedroom to be by herself. She rocked herself to sleep violently and banged her head. Autism never crossed my mind, but I just associated them with orphanage stimming behaviors. Eventually they started to go away when she adjusted to her new environment, though she will still sometimes rock herself to sleep or bang her head back (when she's mad). I did recently read somewhere that about 7% of children with DS can also have autism, so it is a possibility, but I think the orphanage behaviors can also seem like autism. One thing that Darya had to learn was how to be held! Seriously, at the orphanage she was very awkward on my hip as if she was never regularly held. So things like peek-a-boo, and how to normally react to it, may be a foreign concept to her. I don't know if I really have any advice for you, but hang in there and know that many other families have experienced what you are! ((HUGS))

  7. Thinking of you, Cara, and feeling helpless. Hopefully, knowing that your family loves you and supports you may help in some small way.

  8. I am so sorry you guys are having a difficult time. I found wearing my son in an ERGO baby carrier really helped with Stimming, it provides them with deep pressure against your body and he found it very comforting. While she is not getting about yet walking, it might be good to use something like an ERGO so that you can get on with your day and she can be with you and hopefully it will cut the stimming so you both can relax. My ERGO was life saver (mine). Viv

  9. How long have you been home? Many kids will continue to show orphanage behaviors for the first year or even more. So, even if she does have autism things will likely still improve. Our Sunshine (age 4, home 2 years) does have autism and down syndrome together but many of her more extreme behaviors have diminished over time. Also, even if it is autism it doesn't mean that you won't be able to connect with her. It may be a different type of connection but most children with autism do still connect with their caregivers.

    I would definitely look into therapies that would help with the symptoms, especially sensory integration therapy. Sensory therapy has been a huge help for Sunshine and I know a number of other families have talked about how a sensory "diet" has helped minimize symptoms and help their child cope in stressful situations.

    If you'd like to talk please feel free to email me or we can talk by phone sometime too. This is hard stuff and you need support! You will also be in my prayers.

    Rachel Whitmire
    Post-Adoption Care Coordinator
    Reece's Rainbow Down Syndrome Adopiton Ministry