In the end, it doesn't matter what you think. :) This is our reality and I need help. Vera needs help and Jon and I are at a complete loss as to how to help her. It seems like most children with self-soothing behaviors improve over time. It seems like this should be getting better. We've been home almost 2 whole months. So many of Vera's behaviors have improved exponentially in that time. But this one...this one seems to be getting worse. These episodes are coming more frequently. They're becoming more 'violent'.
Some of you will watch these videos and perhaps be shocked. Admittedly, it's still alarming for me to watch after almost 2 months home. Some of you may cry. By the time I was done taking these videos, I was holding back sobs and tears were streaming down my face. To give you an idea, these are just a few minutes of what went on for more than thirty minutes this morning. It will happen again this afternoon at least once. And again at bedtime. I don't use this word often, but I HATE watching Vera do this. I hate it. I want to stop her. It takes all the self control I can muster not to yell STOP! I want to leave the room so I don't have to watch it. But no matter where I go, I can still hear her kicking. I can still hear her odd breathing. I still know what she's doing. And I can't let her do it alone. Watching this multiple times a day makes me crazy, sad, frustrated and angry.
Please, if you watch one of the videos, watch them all. They each show different aspects of Vera's episodes. I'm not really sure what else to call them. Vera will see the neurologist next week and we wanted to be able to show the dr. (rather than try to describe it) what Vera does. Is it a CP thing? Is it a seizure? Is it self soothing behavior? Is it an orphan thing? Is it a lack of language thing? An institutionalized child thing? A grieving thing?
We have no idea. Caleb asked Jon and I yesterday if we know why Vera does this.
Nope.
Do you?
I know several of you who read this blog not only adopted older children, but adopted older children with CP. Did/do your kids do this? Those of you with kids who self-soothe...does this look like self-soothing to you? I know different kids do different things. Should I interrupt Vera during these episodes? Should I let her continue to do this? She gets frustrated when I interrupt her. And she is always calm after doing this for a few minutes. Well, calm for Vera. :) Vera was doing this yesterday afternoon and I kept interrupting her with questions. My intent was to distract her so she would stop. I just want her to stop. She grew increasingly more frustrated the more I interrupted her. Finally, I asked her to bring me something from her room and she said, "In a second." (Her new favorite phrase.) She did her 'thing' for a minute or two and then got up and did what I had asked. Then she laid down and continued. It's almost like an addiction for her. She HAS to do it.
We started wondering if these episodes were actually seizures. I did a lot of reading about different types of seizures and watched countless videos. I was leaning towards thinking Vera is, in fact, seizing BUT we can interrupt her. If Toby starts barking while Vera is doing this she'll stop and say, "Toby, hush!" You'll see at the end of this next video that Vera stops when she hears Abbi say my name. So, we don't think these are seizures. Does anyone have a different opinion?
You'll see Vera smile in this next one. When we first came home, she never smiled while doing this. Now she almost always smiles and even giggles during every episode. This one is particularly hard for me to watch.
So...thoughts? Opinions? Advice?
If nothing else, please pray for us. Pray for Vera.
I commented on facebook too but thought I would write here as well. My daughter has the exact same tendencies. We call it "getting her fix". It is a need she has. The neurologist described it to us as self stimulation. It is a "stim" similar to autistic kids but my daughter isn't autistic. We usually try and interupt her and distract her. She will quit for a sec. then resume until she's done. It doesn't seem to affect her in any way other than to fulfil some need inside her. However we do still try and get her to stop when we see her doing it.
ReplyDeleteGood luck, and try not to worry. It is good you have the videos to take to the dr. with you.
Vera has a place inside her that she likes to "go to" sometimes. It was the place that no one could hurt her, bother her, and it probably makes her feel good.
Hugs and prayers.
Of course, I don't have the experience with CP, but I think it is self-soothing or for stimulation. Alex still rocks/rolls to a certain extent and if he is upset, it is more violent. It may be just his head, just his upper body or his entire body. Sometimes, he has his arm straight out in front of him. He would also bang his head into the back of his car seat - really hard. He still does this sometime, but not quite as hard.
ReplyDeletePraying for you and sweet Vera.
I watched all of these videos. I can see why you would want her to stop. I think your feelings are normal. I think Lorene gives some good advice and hopefully the neurologist will be able to answer your questions.
ReplyDeleteI am a momma in Los Angeles and I work in mental health. I follow many RR family blogs and came across yours. What a long, intense road you have all had! I so appreciate your honesty in being frank about what a long journey it has been with both your adoption and bringing Vera home.
ReplyDeleteWhile I am NOT trained in the stimulation behaviors of adopted children, these episodes look like stimming to me. Children faced with various levels of trauma and neglect often turn to self-stimulating behaviors to help them regulate themselves neurologically. It isn't behavior that is reserved for autistic children.
It sounds like they are so disturbing to you, but your previous commenter is, I believe, spot on. When you see the neurologist, I would talk to him/her about a few referrals to occupational therapists, therapists who work with sensory issues, attachment and self-regulation. A behavioral therapists might help in time. These are likely not all separate therapists, rather these are the issues you need help in addressing from a professional. I hope that makes sense.
Take heart and have faith here: these are important behaviors for Vera right now. They are helping her in an incredibly stressful transition away from the life she has known and into this wonderful future you have given her. She may need help learning how to soothe herself more quietly, they may decrease as her time here passes and the bonding grows...I wonder if they are not increasing because a) her comfort level is increasing (paradoxical, but possible) and b) she is beginning to understand and grieve that the life she had is gone and this is her new life. Overwhelming stuff for anyone!
I like this article I found: http://thestir.cafemom.com/toddler/106510/does_your_child_stim
This too had an interesting little bit: http://manyhatsmommy.blogspot.com/2011/03/ultimate-special-needs-expo-webinar.html
I hope these help. There are so many therapies available out there now...it is amazing and heartening. Behavioral therapies, tools for self-stim behaviors (chewies, weighted blankets for sleeping...I would definitely look into those)
In the meantime, my prayers are with you. I think Vera has a bright future, but you are helping her reverse years of self-care mechanisms that she has had to adopt because she hadn't met her forever family yet. It may take time, and patience for any mom, much less a mom of kids with special needs, is really hard.
God bless,
Jane in Los Angeles
One more thought: I just wanted to offer you support in how difficult it is for you to observe her do this. It sounds like it causes you so much pain. Maybe take these moments to pray and ask for help? Not to end them, which would be your will, but to ask God to help Vera learn how to regulate and to help you find a peace with these behaviors until they are addressed and she gets some redirection from professionals?
ReplyDeleteBeing a mom is so scary and humbling. Hang in there.
Jane
First of all, let me say it looks like you are doing an amazing job parenting Vera. That Mommy break-through... incredibly beautiful. And I know 2 months must seem like a lifetime, but Vera spent many more months away from you and changes take time. (When we bring our son home next year I'll be needing to tell myself that...) I can't really even imagine all you must be feeling though. I'm certainly no expert as all my experience with adoption is through research. We are in the process of adopting a boy with DS and have 3 bio kids.
ReplyDeleteAs Lorene mentioned, this also looks like self stimulation to me. I don't think it's a CP thing but probably more related to post-institutionalization.
Here's a couple of links I found discussing stimming:
http://www.tsbvi.edu/seehear/archive/mannerism.html
http://www.ehow.com/how_4494005_reduce-stimulation-behaviors-children-autism.html
http://www.ican-do.net/sensory_play.htm
Oh, and here's a couple of videos from a young man with autism talking about stimming and if it should be reduced:
http://www.youtube.com/watch?v=F2E1o_yG-N4&feature=related
http://www.youtube.com/watch?v=aDRyuNPMiaI
I'll be praying for you as you meet with the neurologist next week. I hope you'll get some good advice from him/her and other adoptive parents (preferably ones who actually have experience. :) )
You have gotten some good advice above.
ReplyDeleteYou are doing a fantastic job with Vera and I know your mama's heart is hurting for her pain that causes her to need to do this.
She has only been home 2 months. She has been in an institutional setting a lot longer where she needed these behaviors, now they are just a habit (albeit a bad one that you would like to get rid of).
I love that you have taken video to take to the doctor with you.
I would also suggest an OT that deals with sensory issues. They can direct you in to how to work through this issue with Vera, the video will also be a great how far she has come in the future.
Praying for your peace, your strength and continued uplifting,
I know with our adopted kids we are ALWAYS on high alert. (at least I am and I have 7 of them!!) does she do this when she is away from the music? My Ethan rocks on the couch, and Andre looks a lot like this when he is moving. I would think immature muscular system, uncoordinated movements, just trying to learn how to make things move when you want them and in coordination with your other limbs. looks somewhat self soothing too(which is always so sad to us that they had to learn this because no one took care of their needs, but for them its something they NEED!) Ethan has been home since age 2, that was 7 years ago. he STILL rocks. it does something for him(he is from Russia) I gave up trying to stop him and it has diminished over time. I did however make him do his "rather personal" self soothing behavior alone in his room. he quickly decided it wasnt worth holding his junk alone when he could be with the family having fun.
ReplyDeleteThat definitely looks like self-stimulating behavior; something that obviously calmed her while being left alone so much in the orphanage. Other than my own embarrassment, I wouldn't be wanting her to stop it right away, as she needs it. We all have self-stim behaviors: tapping our feet, biting nails, picking lips, etc. But those are all socially acceptable. The difference here is: her's is not socially acceptable.
ReplyDeleteIf she were my child, I would get on the ground w/ her and let her do it in my lap. I'd say: Let's do this together and I'd rock her. I wouldn't talk or try to interrupt what her brain is doing, but I wouldn't let her do it alone. She isn't alone anymore. She finally has a family who cares for her.
She's not going to break out of that long-standing habit after just a couple months. I know 2 months seems long to you, but it really isn't.
I honestly think it is a good thing that she is finding ways to get her needs met. Just let her know that you are there for those needs. Rock her violently at first if that helps her. I wouldn't expect this to end any time soon. Just adjust your expectations to where she currently is; not where you want her to be. :)
I understand how hard it is.
Oh I was wondering if you have heard of brushing? As in sensory brushing. Google it. Something like that might really help her. Maybe when you know it's a time when she's going to do it, you could put her in your lap and rub her arms and leg with firm pressure or brush her with a sensory brush. Give her the sensory input she obviously needs at that time. Meet these needs for her in other words.
ReplyDeleteTraining our adoptees to let us meet their needs is a very significant part of bonding and attachment.
I applaud you for seeking help and not keeping these adoption issues hidden.
I have been following your adoption of Vera since before you brought her home and have really enjoyed your blog. It's takes courage to be so "real" in front of a possibly critical audience.
ReplyDeleteI once had a student who had what was then called "high functioning autism." She was very bright, and in spite of being a little challenging was a joy to have in class. One of the things that tipped us off to her autism was that during the first 10 minutes of every recess she would find a quiet area on the play ground and engage in some behaviors that remind me very much of what I see Vera doing in the videos. She would walk in circles, flapping and moving her arms, jerking her legs, and making facial grimaces. No sound. When I asked Tanya what she was doing, she said, "I dunno - it kind of lets everything out." She was working so hard to do the right thing during class time and during recess - she did this for a kind of stress relief. It wasn't harmful and she really needed it. When she was done, she happily went off to play with the others, able to hold it together until the next recess.
I don't see Vera as having autism, but I wonder if her stimming is serving a similar self-soothing purpose. I did wonder if she engages in this behavior away from home? I definitely don't see this as seizure activity - I have never seen anyone take a break from a seizure to crank up another tune as Vera did in one of the videos.
I have a knee jerk reaction to say that it's not that big of a deal, but I can tell that it really bothers you. And I don't want to minimize or disrespect your distress. I just want you to be aware that it is very likely that most of us who see these videos are NOT appalled, do not pity Vera or you, and can see what a tremendous job you are doing as her mother. When I see Vera I see a bright, beautiful little girl who is working really hard to take in and adapt to a lot of new stuff. I've known a lot of people whose methods of dealing with stress were a lot more destructive! I work with kids who frequently have behaviors similar to these. The behavior usually serve a purpose and not infrequently the child outgrows the need for it or is able to modify it into something that is more acceptable.
ReplyDeleteIt looks like it could simply be self-soothing/stimulating. Because of her CP, she likely has a limited range of motions and since this is the way in which she can move, she might be making the most of it in order to self-soothe. Hopefully you´ll be able to teach her a different way of self-soothing which is more socially acceptable and more comfortable. But Vera looks so happy and it´s obvious you are taken excellent care of her!
ReplyDeleteAnd everyone self-soothes in some way. I personally flap my hands and scratch my skin a lot if I need to self soothe (and I´m an adult :)). Wish you all the best!
I think the above comments are pretty true. Isabel does a very similar rocking motion, minus the feet action. Other than that, it's almost exactly the same. I know this isn't going to be what you want to hear, but Isabel still does this after being home for almost 2 years. HOW she does it and the accompanying emotions have changed, but she still rocks frequently, both during the day (while watching a DVD, or if bored) and at bedtime (to fall asleep). Note that she is NOT anywhere near the autism spectrum. I think it's self stimulating or self soothing behavior. Isabel also loves to have music on while rocking. We can interrupt her or distract her, but she still rocks.
ReplyDeleteWhen we first brought Isabel home, she would rock violently and with obvious frustration. I know that that's hard to watch. I laid next to her at night, just so she'd know she wasn't alone. Sometimes she'd want me to rock her, but she usually wanted to just rock herself. As for daytime, I started laying down next to her and copying her movements. Then it became a game for her. She loved making up different movements for me to copy. It was a little way for me to get into her little world. (She's very preoccupied when she rocks.) Eventually, she pretty much quit rocking for soothing, instead coming to me or Josh for comfort. She doesn't rock violently or in an aggravated way anymore. She's had some occupational and physical therapy, which may have helped, though I don't particularly think so.
As a mom, I don't love that she rocks. It makes a terrible tangled mess in her hair, and I wish she preferred play or something else to rocking. But she doesn't for now. I have no idea if she'll outgrow it. (Josh had an aunt that "rocked" herself to sleep every night until she got married by bouncing her feet on the footboard of her bed. Perfectly healthy, normal adult now!) For now, it's sort of just a part of her.
I emailed you that stuff on reflex therapy, which may be helpful, though again, I don't know that therapy has really made a difference for Isabel.
Sorry it may not be exactly encouraging, but it's our experience. I'll be praying for you!
I have 3 bio kids, 2 with OCD and have stimming behaviors (hand flapping, tongue clicking, grimacing, weird movements when lying down), and one with epilepsy. My son is not able to stop from a seizure when he hears a sound-the seizure controls his movements until it runs its course. My other two, however, are able to stop from thier self-comforting behaviors when I engage them or ask them to stop, but when they are relaxing or "in the zone" they just start up again, most times unaware they are even doing it. Mostly, they do when it they are feeling happy. I think it is just a venting process-maybe it is like this for Vera as well.
ReplyDeleteI have zero experience with CP or adoption (we are just getting ready to start the adopt process) so feel free to totally dismiss what I am writing. But from the videos, it looks like she is not in pain, not unhappy, it looks like she is trying to dance almost. Does she only do this when music is on? Again, sorry if this seems way off base, I hope you are able to find the answers you are looking for. *hugs*
ReplyDeleteI'm just now catching up on your blog a bit, I haven't been reading. I remember when Vera was on Reece's Rainbow, thinking she reminded me SO MUCH of our Mary (Darina on RR, home in 2008). Mary has a rocking motion that is sort of like this, back and forth and involves one arm - she's fallen out of the bed doing it before. I feel like they were on their backs in bed a LOT and basically found something to do to occupy their brains. We don't allow Mary to do it at bedtime as we see it as a way to keep herself awake. We can hear her when she does it, she makes a sort of grunting sound to herself, so we go in and remind her to stop.... and she does. We work very hard not to attach shame but to point out that this isn't necessary for her anymore. We speak very frankly about how she was in an orphanage till she was 5, but she's not now and so she doesn't need to do this. Realize we are approaching Mary's 3rd anniversary of being home and so we can speak this way about it. Give yourself and her both GRACE and don't give into fear. Ask for wisdom and follow through, but don't allow evil to fill your mind with thoughts that are not helpful. Much love to you and to her.
ReplyDelete