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Nascia
02-12-2007, 06:19 PM
DS 5 has recently been diagnosed as suffering from selective mutism and SID. Both my husband and myself work in the mental health field and neither of us had heard of it before. We thought DS may be dx as having Aspergers, but after thinking about it and taking him to several evaluations, we determined that he did have social skills, but was "choosing" (not really, but the best word I could think of) not to use them, which would rule it out. So, at our last evaul the psychologist dx as having selective mutism. I was wondering if anyone has had any experience with it or knows any good resources. I did find some sites on the web, but they were fairly unorganized. Thanks.

Charleyann
02-12-2007, 06:49 PM
About 12 years ago I had a child in my kindergarten class who was a selective mute. I was doing student teaching. I was the only person in the school to really reach him. I visited his home a few times and we commicated first through letters (age appropriate with pictures) and then he started to give me a few words, here and there.

I have often wondered about the little guy. Doctors at first thougt he had autism. He was a very bright little boy!

Charley

Luv Bunnies
02-12-2007, 11:38 PM
I work in a special needs preschool class and there's a little boy with selective mutism in the class next door. I only see him at recess time when our classes are out together but I've noticed some improvement in him in the last year or so. When he first came in, he wouldn't speak a word to anyone or look anyone in the eye. His mom reports that he talks a lot at home but refuses to speak outside the home. The teacher now has him whispering to people and is hoping to get more volume out of him soon. All of the adults on the playground are encouraged to ask him questions to get him comfortable talking to a variety of people. A few weeks ago, he whispered to me that he had just turned 5 and his birthday party was at Chuck E. Cheese. And now instead of waves, we get a whispered "hi" when we greet him. The progress is slow, but it's definitely coming along. I think this guy's case is considered pretty severe. You should be able to get advice and therapy from a really good speech therapist. Good luck!

Forevryoung
02-13-2007, 12:46 AM
I just found this thread- I'm going to be a speech pathologist in the very near future but im still currently in grad school.

I can look in my textbooks/library databases tomorrow if you PM me. It won't take me long to find at least some information that could be useful to you. Let me know.

Nascia
02-13-2007, 06:37 AM
Thanks for sharing, it helps knowing that other people have had experience with the disorder and it can be overcome. It has been extremely stressful for us over the past few years. We had prepared ourselves to accept that he fell somewhere on Autistic Spectrum and were kinda thrown for loop when the psychologist mentioned SM. We were really worried/ scared at first, but are now focused on helping him through it.

His case is fairly severe as well. Our little guy refuses to talk to anyone other than our immediate family, and depending on the situation/ setting even that is a stretch sometimes. Although he makes terrific progress at Disney (one of the main reasons we go several times a year). It does make speech and OT (for the SID) really hard though. Fortunately, we finally come across a psychologist that has experience with the disorder. She's had 2 other clients with it and reports that they made terrific progress over the course of a few years.

I've read medication (low dose anti depressants/ anxiety meds) and behavioral therapy are the best way to treat sm. Any suggestions on how to bring this up with our ped? I'm not sure if she's ever even heard of the disease, let alone the treatment methods.

We have the behavioral part covered. We are in the process of getting him a TSS/ Behavioral Specialist and Mobile Therapist (paraprofessionals/ professionals who will work with him 2-3 hours a day one on one in the home/ community). We are homeschooling right now, simply because he does not function at all in school. He is extremely intelligent (scored in the 95th percentile the IQ test he was given), and we're afraid he would be labeled and lose his love for learning if he were forced to go to school everyday. We did try a small preschool for a year and he cried for hours on end. In the end it wasn't worth it. We also have incentive charts and social stories that we use with him. Thanks for listening.

Forevryoung
02-13-2007, 09:19 AM
I've read medication (low dose anti depressants/ anxiety meds) and behavioral therapy are the best way to treat sm. Any suggestions on how to bring this up with our ped? I'm not sure if she's ever even heard of the disease, let alone the treatment methods.


I would have the psychologist who made the diagnosis reccommend a neurologist or psychiatrist who will work with you if you want to go the medication route.

I would NOT have your Ped prescribe psych meds to a child. They just dont have the experience/knowledge to do the right job.

Nascia
02-13-2007, 10:32 AM
Unfortunately my ped is the best option at this point. There are only a few psychiatrists in the area, and I would never let any of them prescribe meds for my child. Dh works in the field, he has worked with each of the child psychs in the area and would never take our son to any of them. Let's just say he's privy to certain major mistakes that some of the drs have made and it scares the heck out of him. Our ped is fairly good with meds, she writes the script for our older son's adhd meds and has been more thorough with med checks than the child psych we took him to before. We live in a fairly isolated area, as far as health care goes and finding a competant psychiatrist is near impossible.

Forevryoung
02-13-2007, 05:56 PM
Unfortunately my ped is the best option at this point. There are only a few psychiatrists in the area, and I would never let any of them prescribe meds for my child. Dh works in the field, he has worked with each of the child psychs in the area and would never take our son to any of them. Let's just say he's privy to certain major mistakes that some of the drs have made and it scares the heck out of him. Our ped is fairly good with meds, she writes the script for our older son's adhd meds and has been more thorough with med checks than the child psych we took him to before. We live in a fairly isolated area, as far as health care goes and finding a competant psychiatrist is near impossible.

I know what that's like... I'm in State College PA ;)

Nascia
02-13-2007, 06:16 PM
Small world... We live outside of Johnstown.

BeccaGrace
02-14-2007, 09:26 PM
Do you ever have one of those situations where you learn something new and then you suddenly see or hear about that thing everywhere?

I was actually researching some of my youngest dd's symptoms the other day and learned about selective mutism--and here it is again!

Becca was always behind on her verbal milestones and started on Topamax for her seizures when she was 2 1/2. We stopped the Topamax last year because we thought it was impacting her speech and switched to Zonegran...since then she's had great improvement but only speaks around certain people. Most of her speech is at home with our immediate family but after 2 years she is finally speaking to her teacher, aide and speech therapist at school. She will not speak to others and any direct questions get a blank stare in return.

However, from my reading I noticed that to get the selective mutism diagnosis then the child has to be able to communicate without difficulty in the situations where they feel comfortable; so that's why I don't think this fits our situation or might only be part of it. Although she does talk to us her verbal skills are limited; she is difficult to understand and has trouble with expressive speech. We thought this was due to her seizure meds but last week our neuro said he does not think the meds are causing any of the speech/learning delays. However, he did not that she "shuts down" either from anxiety or frustration. She is having some updated testing to see where she's falling developmentally (last tests were 1 1/2 years ago) and I'm going to raise the subject of selective mutism to see if it's somehow involved in our situation.

I'll be following this thread with some personal interest thrown in. I wish I could offer some suggestion or websites but all the ones I found were pretty disorganized as well. I need to return some items to our Learning Resource Center (special education library) and plan to see if they have anything on selective mutism on my next visit--if so, I will certainly share. Good luck!

3DisneyNUTS
02-17-2007, 09:30 PM
I don't know if any of you have family in Long island NY but there is a wonderful specialist in this area who has been published with articles regarding selective mutism. She also had it as a child and overcame it and is now a clinical social worker/educator with the special needs population. So PM me for her info.

belle&beast
02-18-2007, 03:48 PM
I'm an SLP and worked with one little boy with selective mutism. He was also hearing impaired, so it took some time to diagnose him. I worked with him in kindergarten and first grade and by the end of first grade he was answering questions in class and talking to peers at recess.

The thing that really helped with him was to work with him one session individually with lots of positive reinforcers for speaking and also in a small group setting with peers. Once he was talking to me in our individual sessions, I started spending part of our time in his classroom to carry over into another setting and eventually increased our time in the classroom.

This has been my only experience in 10 years and it really was rewarding to see his progress. If you have questions please feel free to send me a PM. Best of luck!

my4kids
02-18-2007, 05:43 PM
My son had no words at 26 months. A special educator worked with him once a week for about 3-4 months with him not saying one word to her. He was thought to have selective mutism, and we started with some sign. (which helped immencely iwth his frustration level. ) Then he started adding words for me and then her. And then it just started to fly! He was never officially "diagnosed" and he did so well so fast with therapy, that we were not sure if that was truly the problem. He is doing great now and is in speech therapy, but by the time he starts Kindergarten, he will probably not need it anymore. As with everything , early intervention is key.

SueM in MN
02-18-2007, 07:59 PM
When I was a school nurse, we had one little boy who came into Kindergarten with a diagnosis of selective mutism. He would talk (whisper) to his sister, but no one else in school. By the time he got to 2nd grade (which was when I left the area) he was doing much better with talking to familiar people.

From what I had read at the time, selective mutism has a lot to do with anxiety and feelings of pressure. Many children/adults with Asperger Syndrome have a lot of anxiety, so some people with Aspergers will also be selectively mute.

Nascia
02-25-2007, 08:40 AM
Thanks for all the replies. It is really encouraging to hear everyone's experiences. I was so scared when I heard the dx. It is such a relief (in a way) to hear that it can be overcome, and somewhat quickly with the right interventions. Although I know it is going to be difficult, there is that light at the end of the tunnel.

He's been making a lot of progress recently, completely surprising DH and I. We've been letting him do his "own" thing (no pressure, no rewards, just letting him be himself) and he's done very well, even playing with kids he doesn't know without his big brother there. He will still shut down if he feels any pressure, but it is a tremendous improvement overall.

The psychologist has pretty much ruled out any type of AS dx. She pretty much said that he has the social skills but gets so nervous in certain settings/ around unfamiliar people, he's afraid to/ can't use them. He likes playing with other kids once he gets to know them and gets along with them really well.

3DisneyNUTS -- It would be great if you could provide her name. Even though we don't live anywhere near NYC, I would still love to read the articles.

I'm not sure if anyone can help, but I did have some questions about reading. He loves to learn and is excellent at math or anything that requires memorization. Right now he is trying to learn to read. I know he wants to, and he has learned about 20 sight words on his own. I'm really trying not to push him, but he wants to try (actually asks us) everyday and shuts down the minute things get a bit difficult for him. He will get upset and quit the first time he needs help, even if he just read 10 words correctly on his own. Any advice or ideas to help him are appreciated. Thanks again.

SueM in MN
02-25-2007, 09:03 AM
I'm not sure if anyone can help, but I did have some questions about reading. He loves to learn and is excellent at math or anything that requires memorization. Right now he is trying to learn to read. I know he wants to, and he has learned about 20 sight words on his own. I'm really trying not to push him, but he wants to try (actually asks us) everyday and shuts down the minute things get a bit difficult for him. He will get upset and quit the first time he needs help, even if he just read 10 words correctly on his own. Any advice or ideas to help him are appreciated. Thanks again.
I know some kids with problems like that do really well with computer or game programs that teach reading. Some are perfectionists and don't like making mistakes or letting anyone see they are not perfect. Most of those kids don't like asking for help, but it's different if a computer is doing the helping.
There are lots of good learning games for things like the Leapster (http://www.leapfrog.com/Primary/GradeSchool.jsp?bmUID=1172412933309&bmLocale=en_US) that allow learning in games that make them seem error free. Some of the games have no 'right' answer, but still are teaching.

Nascia
03-18-2007, 04:52 PM
I know some kids with problems like that do really well with computer or game programs that teach reading. Some are perfectionists and don't like making mistakes or letting anyone see they are not perfect. Most of those kids don't like asking for help, but it's different if a computer is doing the helping.
There are lots of good learning games for things like the Leapster (http://www.leapfrog.com/Primary/GradeSchool.jsp?bmUID=1172412933309&bmLocale=en_US) that allow learning in games that make them seem error free. Some of the games have no 'right' answer, but still are teaching.

Thanks, I think I may get him one for Easter. I think it will work out really well for him. He gets really embarrassed when he makes a mistake and shuts down right away. If nobody sees him, he may react differently. I hate watching him struggle. Hopefully he'll take to it, thanks again.