Non-verbal does not always mean low functioning

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Our therapists say "quiet hands" for my kids too, especially my younger son who flaps his hands a lot and very vigorously. The thought is that that behaviour brings him more into "his world" and therefore out of "ours". I do agree that when he is flapping a lot, he doesn't listen nearly as well, so I have on occasion held his hands to get him to listen to me. I think the flapping helps him concentrate when he's doing something that interests him, and that's maybe part of the problem- he focusses so much on what he's thinking about aided by the flapping that he doesn't listen to my boring requests. Most of the time though, I don't mind him flapping.

I have specifically instructed therapists to leave certain behaviours alone. One is he sometimes needs to jump up and run across the room in the middle of desk work. Their instinct is to stop him and make him sit down, but I've found that that is a coping mechanism and if you let him run to the other side of the room, then he comes back but if you don't let him, he gets stressed out shortly after attempting to run.

Yes, I think they believe that "quiet hands" means attention & focus. Which is strange, because my experience is that he works BETTER after he has flapped his hands to his heart's content. It appears that he uses the flapping as a "get ready" tool to get started on the work. It bothers me to see them stopping him from doing something that seems to be helping him.

I really feel that these stims help his brain grow and mature - he has many missed milestone and the sensory motor stims may especially help him make progress. But telling these people that only get me politely scorned.

I had to chuckle. The only valuable thing our highly paid child psychologist came up with after paying her a thousand dollars was "safe hands" to teach my daughter not to lash out at people. Your therapist obviously uses the same text book as mine LOL!

I'm also quite critical of the autism therapy community made up of a mix of paediatricians, psychologists and speech therapists not really having anything of "real" value to offer but happy to take away struggling parent's hard earned money that would be better served in helping the children they are supposed to be helping in the first place.

Having said this I realise there is a some value in having outiside therapy for parents who simply don't have the time, education or inclination to help their kids themselves. It's all a trade off at the end of the day.

I think all therapists and educators should be asked to at least read and consider the quiet hands essay before demanding children not stim.

http://juststimming.wordpress.com/2011/ ... iet-hands/

I am crying now. thank you for sharing that

Aw that's sad.

That was so well-written.

I say ... Let them stim. As long as they aren't hurting themselves (or other people), let them stim.

Yep...let it snow, let it snow, let it snow.

Laissez-Faire as far as stimming is concerned. Let them stim if it engenders improvement in other areas. It's soothing for the autistic person.

Stuff like this makes me SO. MAD. How does she know why he is doing it? If he is unable to tell her, then how does she know? I think it is equally plausible that he is trying to show her that he is smart and she is too rigid and inflexible to follow along.

I feel hesitant to participate in this conversation because my daughter is clearly verbal and I don't want to discredit anything anyone says or make people who are experiencing it directly feel like I am overstepping my bounds, but there are a few things that have happened with my daughter that I do think may at least provide a "glimpse."

My daughter was late to acquire language. Having just been around my nieces and nephews (2 and 3) with typical development recently, I was shocked by what "normal" looks like. My daughter was at the "2" stage somewhere around 3 and probably didn't hit the "3" stage until closer to 4. And by the time she hit 5, she was ahead. Anyway, the first assessment she had, her IQ was estimated to be in the borderline intellectual functioning range. I actually kind of agreed at that point because before I knew she was autistic, I thought maybe she was MR. Flash forward to when she was 5 and verbal, her IQ was estimated in the superior range. Now when I look back, I see all sorts of evidence that she was this smart all along. We just didn't know it. A lot of what looked like repetitive "play" when she was non- or newly-verbal, I think now was actually play based on her advanced visual skills. I know for a fact that when she used to "stare blankly" at walls and ceilings, what she was really doing was analyzing the patterns made by the imperfections in the surface. I know this now because she sometimes still does it and she can tell me she is doing it. She sees figures and shapes and she is mentally manipulating with them and playing with them. I firmly believe her intelligence was there all along, we just didn't recognize it for what it was.

Another thought that I had when reflecting upon this...it wasn't until my daughter understood the point of talking that she actually started to speak. For her specifically, I am pretty certain she thought that I knew her needs without speaking. Maybe others around her, too. Once, after she was verbal, I repeatedly asked her a question and she told me to stop asking her the same question. I told her I was still asking it because I need her to answer me. She got frustrated and said "I THOUGHT yes!" I don't know if this is true for all non- or minimally verbal people, but it made me sit back and wonder what it must be like for her...almost that every interaction for her required her to prompt herself to respond. It again made me realize that my perceptions of her behaviors from the outside must be very different sometimes than her perceptions of her own behaviors from the inside. I try very hard to take into consideration how she sees her own behavior when evaluating it, because her meaning and my meaning are often discrepant.

Lastly, when my daughter becomes non-verbal, which she still does on occasion, it is very clear to me that she is still highly intelligent, still has those wheels in her brain spinning at warp speed, and still has skills and a kind of intelligence that I will never possess. Her inability to communicate effectively during those times is not a reflection of her internal state.

One more thought...her first ABA therapist did something that has made a lasting impression and changed the way I treated her when she was nonverbal. Remember, at that time, I was told she was borderline and suspected she might even be MR. She had no verbal expression and her receptive language was not very good. Anyway, after her initial assessment, she turned and spoke to my daughter (not me) and explained to her that she and I were going to go into the other room and have a grown-up conversation. She told her she could play with her toys (used during assessment) if she wanted, and that we would be right back, but to go to the dining room if she needed us. I found it weird, because everyone knew my daughter didn't speak or follow what you were saying. When we got into the other room, the first thing she said was that potentially for the rest of her life, people were going to talk about my daughter in front of her as if she wasn't there and that it was my job to safeguard her from this. She said she believed that my daughter knew everything that was going on around her, even though it didn't look like she did and that I must proceed under the assumption that she was a smart little girl who understood it all.

It ended up that she was right. I am so thankful that I was told to treat her with respect from the very beginning. I believe it is what all adults should do with people who cannot tell us what their inner experience is. Because we don't know. And it is presumptuous and egocentric to think that we do.

I once was part of a discussion with adults on the spectrum regarding the concept of "red flags" (many of them found this offensive, btw, because they saw it as synonymous to a "foul" in sports). One man was amazed to find out about the "lining up of toys" red flag. He said when he was young, he would meticulously line up his army men and then have huge imaginary battles in his brain (visual) and that when people would come and move his army men, he would get really mad because he would have to put them back and then start all over again. Another shared that he mentally manipulated erector set pieces. This coupled with what DW just shared and what my daughter has shared about the imperfections in walls and ceilings should be enough to convince NT people that there is more to it. Sadly, when discussing this in other spaces, many will continue to discredit it, sometimes, sadly, even parents of kids on the spectrum.

There were two things my daughters therapists were not allowed to "address": eye contact and stimming. They could request that she made eye contact, and ask her not to stim, but it was never a goal and they did not actively work on either. One of her therapists was a very "quiet hands" kind of therapist and I think it was quite a challenge for her to work with my daughter under those constraints at first. But she figured it out. If she wouldn't have been able to, she would not have been able to continue to work with my daughter. When her time with my daughter ended, she actually expressed gratitude because she said it helped her learn that sometimes you need to stray from the way you are taught to get the results that you want. She felt she learned a lot from my daughter.

HisMom, you are ultimately responsible for your son. And you drive his interventions. I think it is important to find the balance between respecting that professionals are generally NOT idiots (hard to get through a PhD program if you are truly an idiot) and may have more objectivity than we do and a greater understanding of some things, and advocating for our children and using our intimate knowledge of them to guide the interactions of others when it comes to our children. For example, there were times when the mother in me felt my daughter's therapists might be pushing a little too hard. But I trusted them and I had to trust their reassurance that this is what was necessary for my daughter to continue to grow. And they were right. She needed that little push at just that moment to get over some hump.

I also saw that when my son was in TKD. They were very supportive of and understanding of his sensory processing issues and were remarkably patient and wonderful with him. Every once in a while, though, I would think they were pushing too hard. I would want them to pull back. But I learned that I had to trust them and know that they loved and respected my son and wanted him to succeed...and their pushing at just the right time actually did move him to the right level. He was in TKD for years and eventually, I stopped questioning. If they said he was ready for something, I knew he was ready for it (rationally...the worrier in me still doubted it! ). For example, he broke the thick boards (that adults use) way before most kids his age do and I was really afraid he was going to hurt himself trying. Especially when he moved to multiple thicknesses. But he did it. And his pride in himself was such a beautiful thing to watch. But in that instance, if I would have trusted my instinct, I would have held him back. He would have not been able to demonstrate his strength and mastery of technique. But they knew more about this than I did, so I had to learn to trust them.

I think it is important to really get to know your kids' therapists. Once you do, if you trust them, sometimes you need to take a step back. And if you don't, they probably don't belong on the team. My daughter only had one therapist that I didn't fully trust, but I didn't feel I could get her off the team because she was physically disabled herself and she had already confided in me that some parents actually called the agency after her first visit and told them not to send her back. I didn't have the heart. So with her, I did not give her free reign. I stayed closer and was more directive. But with the others, I had to learn to make my expectations clear and establish the boundaries (like no working on eye contact or stimming) and that after that was done, sometimes I just needed to yield to their professional experience.

I think one big difference here is that even when my daughter was lining stuff up and non-verbal, none of them lead me to believe she was anything less than intelligent. I think that if they would have tried to do that, it would have been evidence that they were not the right person to be on the bus (that's a reference to a management philosophy of having the right management team on the "bus," not a reference to the short bus, just in case if some are not familiar). Research has shown that when teachers view their students as less capable (whether or not they objectively are) they will not do as well. Best to have a team that expects the best outcome, not the worst.

This is risking becoming a lengthy monologue, so I best stop!

Our "quiet hands" therapist actually used flapping and jumping as reinforcers and focusers. She was always more "desk oriented" than her other therapists and in the long run that ended up to be a great benefit because it really helped in the transition to school. But when my daughter completed a long and difficult desk task, she was allowed to hop and flap while the therapist sang a special song that she made up for her. If she was getting frustrated, they took a flap break. I think this allowed my daughter to comply with the request for "quiet hands" because she knew that once she was finished with the task, she would get to flap and jump to her heart's content as a reward and with her teacher's approval.

I like reading your monologues, LOL, even if I don't always agree with them.

Not to sound elitist, but the school PSYCHO-logist was not a Ph.D. She had a Master's in School Psychology which did NOT qualify her to "diagnose" my child with MR -- which she tried to do. I quickly let her know that it wasn't in her place to do anything of the sort, only to get a look of pity from the rest of the team and comments about how they knew this would be hard to digest for any parent blah blah blah. My son at the time was ONLY 33 months old and these b1tches were trying to tell me that he was best served in a program for kids with ID, not autism (despite him not having any conditions that could have caused ID - such as brain damage, Down's etc).

I gave those female dogs a good piece of my mind, demanded that they remove ID as a "secondary" and finally got the autism placement I needed. However, the teacher was another naysayer. This woman was not even a Master's in Special Ed, she had an associate's degree and was promoted to teaching a special ed class simply because she had over 11 years experience as a para-professional in the autism program at the elementary level in our school district. This is illegal, per state law which mandates that all special ed teachers have a Master's degree, but our former district is NOTORIOUS for breaking the law all the time. The city is firing police officers as part of budget cuts, so who wants to bet that providing services to children with special needs was on the top of their list of priorities ?

Anyway, the "teacher" did not want to send home daily communication logs ("too much time on top of collecting data on goals" -- her words, not mine), was never available to chat before or after school ("too busy", whatever that means) and could not give me a straight answer to a single question I asked. When it was time for his "progress report", the IEP showed ZEROES across the board. More "evidence" they said that my son is "ret*d".

I lawyered up at that point and was about to go to Due Process when my husband told me that it is better to just move to a better district. I am not one to give up without a fight but when my lawyer told us that she had had terrible experiences with this particular district and that her advise was the same as my hubby's - save your energy for other battles - I took it and we moved. But rather than enroll him in the new district, I began to homeschool him. His progress has been slow but measurable.

I do get what you are saying about assuming competence, and that is what I do these days. It took me over a year to understand that the former district had their own agenda to give my son unflattering labels, and I no longer dwell on that phase of his life. But the slowwwww progress worries me. I am no longer as hung up on speech as I used to be, I am now more worried about receptive language, cognition and communication. I don't think my son is MR at all, and I won't trust anyone who tells me so. I am too practical to believe in conspiracy theories but I won't trust ANYONE blindly after my horrific experience with the first set of "professionals" who worked with him. Even if they had a fancy Post Doc from an Ivy League. I will still do my own homework, may accept their advise / feedback but believing them 100% ? Won't happen, until they have EARNED my trust.

They may be the experts in the field, but I am the expert on my son.

Last edited by HisMom on 26 Apr 2014, 4:34 pm, edited 1 time in total.

It means a lot to me to have people say that! I talk to my kids like they understand me, even though I've been told it's too complicated and they respond better if you keep it short (instead of "Could you go wash your hands, please", say "Wash hands"). So usually if I'm trying to get them to do something, I say it normally, wait a few seconds, then shorten it and give a prompt. I don't know if that's the right thing to do. If I don't need them to respond, I just talk completely normally to them- whether they are paying a blind bit of attention or not. I hope he's smart. Like I said in my first post, I have heard these stories before, but I always get back to thinking "Yes but..that's somebody else's kid. Mine might just be the one that isn't like that"... I don't know. But they still deserve the benefit of the doubt I think.