Selective mutism experiences anyone?

[SuZir]

My littlest niece is having some issues. She is four and just went through her first round of evaluations and came through with all classic diagnose of F83 'Mixed specific developmental disorder.' In other words: There is something going on, but your kiddie is still so young, so let's start with symptom based interventions and therapy and have new evaluations in two years to decide what it actually is if anything. In the end it can turn out to anything from ADHD to asperger to mild mental retardation to learning difficulties to dyspraxia to dysphasia; and likely something else, those are just the most common I have heard. And for some it doesn't lead to anything or 'people are different, some are just little more different' like with my difficult child.

With my niece, they found rather classic sensory issues (hypersensitive and sensory avoiding), clear delay in gross motor skills, advanced language skills, some anxiety issues and her being in the verge of selective mutism. For last year she was in the day care four days a week (while her dad was on part time parental leave and home with her one day a week) and that was overwhelming for her. In day care she acts very shy and she doesn't talk to adults much. And if she does, she whispers and only a word or two or very short sentence. With other kids she talks more freely. At home and also with us and other extended family she is very talkative and advanced verbally.

Her dad has some Obsessive Compulsive Disorder (OCD) tendencies and says he used to be a very shy kid, but other than that there is no neurological or mental health issues in the family (well there is mother in law...)

Last year she was in younger kids group (12 kids from age 1 to 3 with three qualified adults (one with BA in early education, two with AN in childcare) and one aide without required education to be considered qualified day care worker) but now she is in even bigger group due to her age. 18 full time and 2 part time 4 to 5 year-olds with similar group of adults. They are very worried how she can stomach that. She is waiting an opening in their special needs group that is smaller and has place for two kids with significant special needs (like autism or mental retardation or significant medical needs), two with milder special needs (she is waiting other of those spots) and four well developed 'support kids.' That group also has more adults per child. They have one early education teacher specialised to special needs kids and two day care workers with AN and 1-on-1 aides if some of the kids needs that. My niece will likely get a spot in middle of November. sister in law knows the family whose son's place niece will likely get and that family is expecting a new baby and also older son will stay home after the birth, his special needs are purely medical (type 1 diabetes) and he doesn't need early education services for the support. This group will be great because all the therapies atc. can be arranged to be held in day care. Now niece has to get to her FT and Occupational Therapist (OT) appointments outside of day care time. The plan is for her to be at the day care only three days a week till she gets the special needs group spot and mother in law is looking after her two days a week. They will start selective mutism interventions in day care, but neither I or sister in law has much idea what they will be. There will be a psychologist to advice day care workers about that in two weeks, so I guess sister in law will find out then too.

sister in law is rather freaked out with selective mutism thing and has read lots of contradictory info about it online. She is also little confused with sensory issues, because she has known my difficult child his whole life and while also difficult child is hypersensitive, he was still very much a sensory seeker, and also very advanced in gross motor skills, so for sister in law it is difficult to get her brain wrapped around the idea that two so differently behaving kids can have essentially the same problem.

 

[InsaneCdn]

so for sister in law it is difficult to get her brain wrapped around the idea that two so differently behaving kids can have essentially the same problem.

Can't speak to the selective mutism but...
I have two kids with very different presentation of essentially the same umbrella diagnosis.
How can that happen?
Because... the diagnosis is NOT the symptoms.
For example, sensory:
One kid is hypo-sensitive to touch, the other is hyper-sensitive.
The similarity is... they process physical sensory input different than "normal". Once you're "different", that "different" can go in all kinds of different directions. It's not the direction but the "difference" that defines the issue.

One kid craves extreme spice, another can't handle black pepper.
One kid craves adrenalin rush, another avoids it at all costs (sensory-seeking vs. sensory avoiding)

The hard part for me was that these are "normal" differences... just taken to extremes!

 

[SuZir]

IC: Yeah, but what confuses sister in law is, that my difficult child is one of those in the minority who actually are hypersensitive but still sensory seeking. I really don't think he would have any hypo-sensitive senses, he does have some that are closer to normal, but his sense of touch, hearing, temperature, scent and taste etc. seem to be all hypersensitive. He is closer to average in pain and I'm not totally sure about vestibular and proprioceptive, but at least his sense in both is extremely acute. Still he is sensory seeker with most of his senses. This is a kid that always touched everything, put everything into his mouth (but didn't eat most foods when young), still haven't learned to consistently use the chair head pointing upwards and feet down, and still loves everything fast and whirling. On the other hand he can stand on a swiss ball and juggle with tennis balls simultaniously. And even things with he was sensory avoiding when young, have changed to normal or sensory seeking. He still doesn't love overly hot food, but he can eat some, with noise he has always been ambivalent (one of those who screamed like a fire bell because others were too loud) and all in all he has become even more a sensory seeker with age. But he was that from the beginning.

And I think difficult child may have been only kid sister in law has actually known to have diagnosed sensory issues. Niece is more a text book case with hypersensitivity and sensory avoidance and of course sensory seeker and sensory avoider don't look anything same. But because we mostly talked about difficult child's sensory issues in terms of him being hypersensitive (because that caused the problems we needed others to be aware of) I think sister in law has assumed that hypersensitive kid would be more like our difficult child. And that of course is not true. Most hypersensitive kids are certainly not sensory seekers. So she has some reading to do to wrap her brains over the idea that difficult child was an exception and her daughter can have same issue with very different behaviour.

P.S. Yeah, you guessed correctly, it was certainly a fun ride with hypersensitive sensory seeker who got very easily overwhelmed by sensory stimuli

 

[InsaneCdn]

P.S. Yeah, you guessed correctly, it was certainly a fun ride with hypersensitive sensory seeker who got very easily overwhelmed by sensory stimuli

Oh Ya. been there done that a bit around here, too.
Just like the kid with a food intolerance who... craves that food.

sister in law just has to understand that your difficult child is an exception among exceptions... or as my difficult child would say, really weird even for a weirdo.

 

[BusynMember]

What is Selective Mutism? It is diagnosed rarely here except in the case of severe trauma (a child could once speak, then was kidnapped and now does not). Is that what you mean?

A speech delay with sensory issues to boot in the US would be probably seen as likely a spectrum child. But there is a difference between a child who can speak and won't and one who can't or has trouble with it. Sensory issues usually mean something else is going on besides the sensory issues.

My son has sensory issues and he is Autism Spectrum Disorders (ASD). I have sensory issues and I have a mood disorder and neurological soft signs that can not be identified as any specific disorder...but they are there. Any interventions available for this kiddo? The sensory stuff can be made better, but I don't think it ever completely goes away. It's not ALWAYS a bad thing. Both me and Lucas (and nobody else in our family) can smell if one of our doggies has a poop accident indoors even if we are three rooms away. Tom and Jumper will say, "I don't smell anything" but both of us know!!!! Our sense of smell, along with hearing and touch, Is very sensitive A big plus if you want to get that poop off the floor pronto )

 

[susiestar]

I am a bit short on time, so I am sorry if I repeat what someone has said.

I strongly urge your sister and the rest of the family to read "The Out of Sync Child" by Kranowitz and also "The Out of Sync Child Has Fun" by Kranowitz. The first will explain sensory integration disorder very clearly and will explain various treatment options. One of the best options is brushing therapy combined with gentle joint compressions. This MUST be taught by an experienced Occupational Therapist (OT) because if done incorrectly it can cause serious problems. Done properly this therapy is incredible. Truly incredible. It actually will "rewire" the brain, creating new pathways for the brain to handle sensory input from the nerves. While sensory issues never really go away, they can become much better and less of an obstacle to everyday life. I have seen truly incredible changes in people with sensory issues. My youngest went from being totally incapable of attending school every day because he would be so overwhelmed with things that he would sit and sort of vibrate on overload for a day or more if forced to do more than he could handle. In spite of a truly incredible IQ and being far more advanced intellectually/academically than his same age peers, he missed at least one and sometimes as many as three days every single school week up through second grade. He missed more than 1/4 of the school year, and we were blessed with a school that 'got it' and didn't make a big deal over it. Technically they could have made us go before a judge for educational neglect, but with documentation from the docs and specialists, plus being able to literally see how he would just shut down and be unable to cope when pushed too far with sensory stimuli, they just ignored some of his absences so it would not trigger the system to report us to the courts. They knew he was learning, and that we were doing all we could, and that was enough.

I also have sensory issues that have impacted my life. I very much wanted to go to a top ranked cooking school, but I simply cannot eat fish or organ meats. I get very physically ill from the smell and even more from the taste. There is no way to overcome this, and we tried about everything. It drove my folks nuts, but it was not something I did by choice nor did I have any real control over it. Even sneaking those things into food that didn't taste like them did not work. I still got very ill. So I chose another route for my education. As I get older, I find some sensory issues getting more pronounced, which is a real PITA.

I have a little bit of selective mutism history. I flat out did not speak in school for an entire school year. Sixth grade, to be precise. I had abominable teachers and the year before one nun loathed me for reasons I did not ever understand. She did all sorts of awful things to me, stopping short of actual physical abuse that would leave evidence because the entire school was a bit terrified of my parents (mostly because a teacher attacked my older bro a few years before then and my dad scared the living heck out of the man over it - the entire situation was ugly and my dad took it to a level that truly terrified a very sadistic teacher). So they used emotional abuse on me when it was clear that I was smarter than most of my teachers. I had learned that it did not matter what I said at school, I would not be believed if I said something was wrong and I would be belittled and humiliated if I said anything. So I didn't. Not to a single adult and mostly not to any of the kids. the teachers had the other kids calling me names and treating me like I was the lowest life form in existence. Eventually I was silent enough and mean enough that they just left me alone for the last few mos of school. Even the priest was almost afraid to ask me anything because I would just stare at him and then go back to whatever book I was reading.

It was not an easy time. No one told my parents anything. My mom didn't believe me years later when I finally told her. Then she ran into an old classmate from back then and asked a few questions. She was shocked at how bad things were and that I truly did not talk to anyone for any reason.

I would not really push the girl to speak. If it is possible, they should try to find a smaller group for her to be in during the day. It seems like there may be just too many people for her to be able to cope. She likely needs to feel safe and in time it will get better. I don't mean to not introduce other situations, or people, but to do so in controlled ways so that she can have small successes in smaller groups to build her confidence. Attempting to force her to speak to get anything will most probably cause her to go even deeper into herself around other people. I know it happened to me, and I saw this as the result when a girl in one of the sp ed classes at the elem school here was forced to speak or she could not go to the bathroom, have lunch, etc.... She simply stopped functioning at all. She would curl into a ball under a table or in a closet and stay there all day, even wetting or soiling her pants rather than ask to go to the bathroom.

Some children have luck with sign or wtih cards showing photos/words of what they want rather than asking. I do not know if this is truly effective, but it is better than having them refuse to communicate at all, I guess. I observed this at school with a little boy, but I don't know the background of the child or the diagnosis's.

 

[SuZir]

MWM: Selective mutism is not related to trauma. Trauma can cause mutism but it usually presents differently than selective mutism and shouldn't be diagnosed as such and according the research kids with selective mutism don't have any more trauma history than kids without. Selective mutism also has nothing to do with speech delay either (though also people with speech delay can have it.) Selectyive mutism is a situation there the person is capable to speak and speaks in some situations normally and freely, but who in some situations or to some peole doesn't talk at all. Typical case would be a kid, who at home speaks normally, even a lot, but doesn't speak at school. And it can be, that they do speak to other kids, but not to teachers or other way around. Kids still often communicate and participate in other ways. My niece speaks to other kids some, but only extremely limited way to adults in day-care. Selective mutism is anxiety disorder and seems to have genetic component.

To me it also seems it is known disorder also in states: http://www.asha.org/public/speech/disorders/selectivemutism.htm

Treatment is what confuses sister in law, because after evaluations she was told interventions would be needed and that psychologist will set them up with the day care. Some online sources do recommend similar interventions she was told about, some recommend not to try to force child to speak in any way.

Niece is having few interventions already. She currently is working with physiotherapist and occupational therapist. Has been some time now. And she had her first half year of physiotherapy when she was a baby and she was late to crawl and had other slight gross motor skill delays. It was very helpful and she was hitting her goals when year and half. But when three, she was again delayed. Around here physiotherapists do more than in US, I guess. At least here in the board anyone seldom mentions physiotherapy as an intervention and here where I live there basically are few special needs kids who are not working with physiotherapist. Is there is any motor skill issues, physiotherapists are always involved. So I guess in our systems physiotherapists do some things that OTs do in your. While niece also sees Occupational Therapist (OT), motor stuff and lots of sensory stuff is done with PT. She is now waiting also speech therapy. And as I said, she is waiting a spot in special needs day care group and if that happens before there is an opening in speech therapy (very possible, they have long waiting lists and she is not the most urgent case), she will be seeing a speech pathologist during the day care days. And while waiting, they will have selective mutism interventions in current group.

Susie is right and her current group is too big and taxing for her. That is why they will keep her there only three days a week and mother in law is having her twice a week. Special needs group will be much smaller and there is a lot done to have environment less taxing on sensory stimuli so hopefully that will be easier for her. But she will not get that spot before November. Niece doesn't seem to be bullied in day care and there are few kids she does play (and talk) with. She does seem to be scared of rowdier children and their plays and is clearly bothered by the noise. She does communicate with gestures with adults in day care and may occasionally whisper something to an adult, if she wants something. But she doesn't talk during their group times or during activities or chat with adults. Sometimes she may mouth the answers to some of teachers questions if she is excited with 'the lesson', but she doesn't answer aloud. And if she for example needs to use bathroom, she may ask in gestures etc. And even that is difficult for her (they have tried to introduce her to showing a 'bathroom card' if she needs to use bathroom, but she is very hesitant. So they just ask her often if she needs to go and so she can just nod, when she does.

EDIT: By the way, the interventions to make child with selective mutism to talk are not nowadays actually forcing them to talk, more either bribing them to talk or trying to trick them to talk. For example there may be a 'surprise prise' child can get, when she asks it aloud. Or child is taken to the room in the place she doesn't usually talk alone with person she does talk with (for example child and parent being left alone to the class room.) And when child reliably talks with person also in that environment, people child doesn't talk with start to stop by while child and trusted person are talking (e.g. teacher comes to class room to 'get something they forgot') So that is kind of exposing them to the idea of talking in that environment little by little. But apparently if the child understands that the goal is to make them speak, even those approaches can backfire.

 

[BusynMember]

Suzir, thanks for explaining. It's interesting because my PastryChef did not speak in school her entire first year of preschool. The next year, when she said something, the kids would get excited. "Hey, Julie's talking!!!" LOL. I guess that is a form of it because she never shut up at home. When the teachers found out she spoke just fine at home, nobody seemed concerned. Hmmmmmmm...

I appreciate your explanation.

 

[SuZir]

MWM: Sounds like Julie may have had milder case selective mutism (if I remember correctly, it averagely takes about 8 years to get over it - and some don't, while fast majority does.) Maybe it is so uncommon inj your area that schools etc. are not aware? In my country social phobias are common. Again making some conclusions of this board much more common than in USA (which makes sense, those with social phobias did not leave to the 'new world.') I can't remember anyone here whose kids' main problem would be social phobias or even panic disorder and around here those are the basic makings of the difficult children. Large part of our severely troubled kids have social phobias and panic disorder as their core problem and that leads to abuse of alcohol and benzos (most common illegal drug around here are abused benzos) and unability to work or even leave the house without substances. Social anxiety problems are very much part of our genetic make-up. And selective mutism is somewhere under that umbrella.

When my difficult child was younger and I didn't have to much worry about his anonymity I frequented a local message board for parents of special needs kids and there selective mutism came up frequently. Unfortunately I don't remember much about those families experiences. I recently tried to find that forum to give a link to sister in law but it seems to have disappeared