I used to read young adult mysteries. My favorites were Nancy Drew, the Hardy Boys, and Phyllis A. Whitney’s young adult collection of mysteries with strong heroines and evocative titles like “Mystery at the Isle of Skye” and “Secret of Haunted Mesa”. Oh, yeah, and I used to love to read Agatha Christie. Sometimes I feel like I’m in a mystery story as I hunt for information regarding selective mutism and sensory processing disorders now that my preschooler has been diagnosed with. I search the internet, visiting message boards and blogs searching for clues to help me understand. I talk to parents of special needs children, to hear how they navigate the school systems to get an IEP. Something has been on my mind ever since the neuropsychologist suggested that my daughter’s issues of selective mutism has a lot to do with hypersensitivity and that she has something a retained primitive reflex. I know what infant reflexes are, at least the most common ones. The rooting reflex is one of the more obvious ones that a newborn has. You stroke the cheek, and the head turns toward that sensation. In nursing newborns, this phenomenon lasts for quite some time before it fades away. Then there is the Moro reflex. You probably have heard of that one. It’s the one that makes the infant startle when it hears a loud noise. But then I found a very interesting link on a selective mutism message boardI was on (it’s no longer in use due to spam/trolling issues). One of the mothers provided a link to a pdf file regarding primitive reflexes. (let me know if this ends up being a dead link because I have a copy of the pdf I could email you if interested. What they have to say about the Moro Reflex
If the Moro reflex persists beyond three to six months of age it becomes an automatic therefore uncontrollable overreaction, overriding the newly acquired higher centre decision making. The child (or adult) may be hypersensitive to any of the senses, which turn the reflex on (e.g. light, sound, touch or any stress) and so may withdraw from situations, have difficulty with new or stimulating experiences which the normal child would find exciting, have difficulty in socialising, accepting or giving affection. Because the reflex stimulates fight or flight responses, these responses may happen inappropriately from anything in the person’s environment. Fight or flight responses prepare the body for fighting or for running, so the child (or adult) may be an aggressive, over reactive, highly excitable person, unable to turn off and relax. These responses are for pure survival, for very focused fighting or running, not for being perceptive, sensitive or noting the subtleties of circumstances, thus the person may have difficulty functioning socially (which includes the schoolroom, playground, workplace etc.). The child (or adult) may be very difficult to understand, they may be loving, perceptive and imaginative but at the same time immature, over reactive and aggressive. As the fight or flight adrenalin response may be inappropriately turned on many times a day and is on standby most of the time, there is a constant demand on the adrenal glands which may become fatigued. These glands are very important for the immune system, and if they are fatigued allergy and chronic illness may be experienced.
There is something called the Fear Paralysis Reflex, and according to that website
The Fear Paralysis Reflex begins to function very early after conception and should normally be integrated before birth. It can be seen in the womb as movement of the head, neck and body in response to threat. It is sometimes classified as a Withdrawal reflex rather than a Primitive reflex. If this reflex is retained after birth, it can be characterised by withdrawal, reticence at being involved in anything new, fear of different circumstances, the ” ‘fraidy cat ” child who bears the brunt of teasing by normally adventurous children. “Withdrawal” does not necessarily mean quiet withdrawal . The child may scream loud and long when faced with a new situation or perceived threat. A colleague reported one child who stood and screamed until he paled and passed out simply because he was transferred to an unfamiliar schoolroom. This behaviour appears to be due to the reflex’s involvement with the parasympathetic nervous system. Most of us are familiar with the “fight or flight” adrenalin rush sympathetic nervous system, fear paralysis reflex involves the opposite “eat and stay” parasympathetic nervous system. The parasympathetic nervous system is intimately involved with the vagus nerve. This nerve may be mechanically trapped in the chest, abdomen or neck. Release of the vagus nerve entrapment corrects one physical factor that contributes to retained fear paralysis reflex. Inappropriate retention of the fear paralysis reflex can contribute to such conditions as Sudden Infant Death Syndrome, [s]elective mutism, hypersensitivity to sensory information and may result in physical and psychological conditions such as Panic Disorders. As it begins first and is normally integrated first, retained fear paralysis reflex may effect the integration of any other primitive reflex.
Yep, I guess that would be my daughter. That explains a lot. She has separation anxiety/generalized anxiety, hypersensitivity to sensory information, and selective mutism (though this website calls it elective mutism – that is an outdated term, there is plenty of current information out there saying this condition is not voluntary at all). I’m starting to see how the pieces fit together. As I gather bits of information, I really do feel like I’m a bit of a sleuth myself. Yeah, I know how corny that sounds. Sometimes you got to find ways to keep you sane even if it’s by being silly. (and anyway I was a real life crime fighter when I used to work in forensics, so it’s not too far out of the realm of reality for me). Ultimately, if the doctor is right about this link between primitive reflexes, sensory processing difficulties and selective mutism, if I work on the reduce the sensory overload, help her get with anxiety reducing strategies, then maybe we can get this worked out without medication and sooner rather than later. Additional reading: Books by Sally Goddard Blythe The Well Balanced Child: Movement and Learning Reflexes, Learning And Behavior: A Window into the Child’s Mind : A Non-Invasive Approach to Solving Learning & Behavior Problems NeuroDevelopmental Therapy – Inhibition of Primitive Reflexes – nice article about what problems can be attributed to retained primitive reflexes.
The Moro Reflex – emerges at 9 weeks in utero and is the earliest form of “fight or flight” (reaction to stress) which is fully present at birth – is usually inhibited between 2-4 months of life – when retained has an overall effect on the emotional profile of a child because he/she is caught in a vicious circle in which reflex activity stimulates the production of adrenalin and cortisol (stress hormones) – presents as a paradox – the child is acutely sensitive, perceptive, imaginative on the one hand, but immature and over reactive on the other. -results in coping in one of two ways- withdrawing from difficult situations, difficulty socialising and neither accepting or demonstrating affection or becoming aggressive, highly excitable, over-reactive and dominating – forms the corner-stone in the foundation for life and living and its effects are profound if it is not inhibited at the correct time and transformed into an adult startle response. – occasionally the Moro Reflex is retained to adulthood. This being the case, adults present with free-floating anxiety; excessive reaction to stimuli ( mood swings – labile emotions; difficulty accepting criticism; tense muscle tone); difficulty making decisions; weak ego, low self-esteem ( insecurity/depedency, need to control/manipulate events).
**** Okay I hate dead links, so here’s a new link about the problems can be attributed to retained primitive reflexes from Sue Hyland.
I feel a bit like a sleuth, myself, since my 4YO was diagnosed with sensory processing disorder. For so long, I did not know what was going on…separation anxiety, eating challenges, and most recently I learned he has selective mutism. All his sensory integration issues could be explained by his lack of balanced nutrition, so it has been both a shock and relief and a huge learning curve…trying to understand my own child’s behavior and how to care for him in light of this new thing called SPD. It’s nice to hear how another person is coping with this mystery in the swirl of life. Only the ones who are in it really understand. Well, I’m off to do a bit more sleuthing…and hanging on to my sanity with many prayers and one day at a time!
That’s about when we got the answer for my daughter. She was 4.5 when she was diagnosed. What I have come to discover is that every child’s unique combination of challenges is why it’s hard to fully have a “one size fits all” approach to things especially when one of those challenges isn’t fully understood by the medical or school community. So you are even more on your own to piece together things. Though, yes, selective mutism often goes hand in hand with sensory issues.
Good luck, I hope you find something helpful here on my blog.
So amazed to find that selective mutism and sensory disorders can go hand in hand. These two things are the only difficult things about my generally bright and cheerful 3 yo little girl. She will not and never does speak at nursery or in a variety of other situations, despite usually being chatty and verbal. Even with some people who she says she likes and is keen to see, she can’t speak. She also has an intense sensitivity to clothes, never wears underwear or socks, pulls in distress at the necks of any t-shirt or shirt, and pulls her trousers down over her hips like a teenager. She takes off (all) her clothes any time I am not looking, and has huge crying fits over dressing every day – usually several times, as I have to keep putting discarded clothes back on her. It is upseting for me too to see her very genuine distress. I get lots of comments from strangers about her not wearing enough for the weather. I will be looking up the references on your site. Thanks.
Fiona – I’m glad I could be of help. It has been really fascinating to research this information. It’s not all in one place either (except here). My daughter’s neuropsychiatrist told me that most SM therapies deal with just the symptoms without going to the brain based causes. When you work on the sensory issues, you also work on the SM too. Things like ballet and Yoga for Kids help with body awareness and are sensory calming and help reduce anxiety.
Thank you for your blog…I just found it. I been reading on other of the official SM webpages and just now thought of looking for blogs to at least see how much company I had. It can be frustrating to not have anyone around really understand what is like to have a child with SM.
My son was properly diagnosed in February’09 (he was 2months shy of turning 4) but when we look back in time he started to not talk to others around Oct-Nov of the prior year, it wasn’t until he stopped talking to us in late January that we stoped thinking it was a phase…then I discovered SM. The first therapist help get him by giving us tools to control his anger and we made it to the point where he was willing to wisper to us in front of other people, he talks freely infront of strangers but not if they try to engage him (or he thinks they might engage him), we had wonderful support at the preschool so he is comfortable whispering to us there and talking normally in the school as long as no one is present. But progress stopped about 4mo ago so we now switched to a new therapist – a specialist on Anxiety
(is hard to find one that specializes in SM) and hope that behavioral therapy will help.
I will definitely look into the sensory & movement – I had not read that yet so, wow – maybe my kids will get a trampoline as well – they will be in heaven.
Boricuamama. I’m glad you found this helpful. In January, lots of places like sporting shops and even Aldi’s have inexpensive mini-trampolines. I got one with a handle for $40 at Aldi last January. The girls still use it and it’s still in great condition. Do NOT go to the therapy websites for them otherwise you will spend a lot of money on them.
“I have found the unraveling the puzzle of the primitive reflexes reactivated in injuries like car accidents, falls, and other types of trauma like forceps delivery, and non tradional natural forms of birthing. These primitive reflexes are operating simultatneously with other higher brain functions even though they may just be partially functioning. With a client who is on a weight loss program, I found that because the women had been a forceps delivery, that she had a Segmental Rolling Reflex that had not been completely replaced with proper postural developement and cranial communuication with her body. This was causing her to loss weigtht and gain it right back. We also found other neurological reflexes that were affecting the midbrain regulation of the her hormones and the digestive processes. She has lost 18 pounds in the last 21 days as of 5-10-10.”
Interesting Stephen, I’ll have to keep that in mind as my first born was a forceps delivery. I tried to birth her naturally, but after 2 hours of pushing through nausea, I was so sick and weak it was either forceps or a c-section. I opted for the forceps.
My daughter is 5 and in Pre-primary, I haven’t taken her to see anyone regarding this matter, but she doesn’t speak to her teachers at school (or even any of your friend, just their kids) Last year she spoke to her friends in Kindy but this year not even to the kids in her class. We’ve had play dates with 2 classmates and she speaks to them at home. I am worried that the teachers are not getting any results out of her because she doesn’t speak to them. Is this the same as SM?
I can’t possibly know for certain, but it sounds like your daughter might have it. She might have bonded to those 2 friends last year because of their personality – she might have felt safe to talk to them. This year she probably doesn’t feel safe (for whatever reason).
Since it is an anxiety disorder, it’s also possible that she could have gotten more anxious in the school setting if the kindy setting was strictly ‘play based’ but now may have difficulties if there is more rigid expectations in pre-primary. That *could* explain it. Then again, it could also be something she’s not liking about that particular teacher.
I think you could still try lots of SPD OT ideas at home – lots of playing at the park, lots of sensory activities, yoga and/or ballet to help relax her. Even if she doesn’t have SM, these things will feel good and help her overall development anyway.
Not getting any results out of her is something to be concerned about, if she is getting poor marks for something she can’t help. That’s where diagnosis might be your ally. The diagnosis might enable her to get more help and to be treated a little bit more compassionately because this is something she’s not doing ‘on purpose’, but because of her communication difficulties. If you check out the Our daughter’s selective mutism journey tab at the top, you will find some ideas for how to help your daughter. There’s even a handout you can give your daughter’s teachers so they can help her and not make it worse by expecting far too more than she is capable or worse – like punishing her for not speaking.
Good luck and I hope this helps.
HI ! MY 5Y DAUGHTER HAS SM- AND SPD- I FOUND A WONDERFULL OCCUPATIONNAL THERAPIST WHO USES THERAPY FOR SPD USUAL KIND OF ROUTINE- AND SHE JUST STARTED 3 WEEKS AGO A REFLEXE APPROACH !
WHAT I WOULD LIKE TO KNOW, WHAT DID THE REFLEXE APPROCH DO FOR YOUR CHILD ? DID YOU SEE IMPROVMENT AND SO ON ? HOW LONG AFTER TREATMENT ?
ALSO, I AM READING ABOUT OMEGA 3 DIETS .. MY DAUGHTER DID HAVE SEVERE ALLERGIES TO MILK AND HAD TO DO A PREVENTIVE DIET BUT SHE IS NOW DOING FINE.. MY INTUITION ALWAYS TOLD ME THAT THESE ALLERGIES MUST HAVE TRIGGERRED SOME TYPE OF DEFENSIVE REACTION THAT WENT BEYOND THE REDNESS ON HER SKIN..
THERE IS VERY LITTLE DATA ON SM-SPD -AND THE REFLEXE APPROACH COMBINES IF YOU HAVE SOME , I WOULD APPRECIATE IT !
Well, the ironic thing is that we were too far away to get her a particular kind of reflex therapy. Plus with the goofy school schedules, there was a problem with getting her to and from the therapy in time for school. The therapy I was told I could try is called the Feldenkrais movement therapy. I was told for her, 8-10 sessions should help improve things for her (it might take longer for other children). But there just wasn’t a way to get her the therapy.
I asked them what I could do instead to help her. I was told that ballet and yoga would be helpful. Both because it’s gentle body movements and because it’s soothing.
I enrolled her in a ballet class which she enjoyed a lot, and bought a Yoga For Kids DVD set for home, which I worked on with her.
I also took her to the parks that had playground equipment and made sure she got a lot of spinning, climbing, crawling and balancing in.
Jumping on a trampoline helped a LOT to trigger the speech centers in the brain. This was right out of The Out of Sync Child Has Fun book by Carol Stock Kranowitz. I forgot which page, but we DID see her go from speech come out of her after jumping on a trampoline at a playdate.
For us, we did the SPD therapy at home and searched the web for ideas on creating a sensory diet.
As far as data or a report of some kind linking the selective mutism and SPD, I’m not sure I have any particular reference. My daughter’s pediatric neuropsych was the one who told me that my daughter’s SM was induced by the SPD, and she referenced Sally Goddard’s Work.
Let me check the Reflexes, Learning and Behavior book, because there is an article in the appendix specific to selective mutism about it (Elective Mutism: The Unchosen Silence – this was before the change from “elective” to “selective”). Let me see if it links reflexes, SM AND SPD. I know it links reflexes and SM, but I’m not sure it also talks about SPD.
One thing you might find interesting was this anecdote from a mother in the book Sensational Kids, pg. 279.
“My daughter Regina has an anxiety disorder and selective mutism as well as sensory over-responsibility. When she is an uncomfortable setting such as school, she becomes speechless. Just imagine how it feels being bombarded by stimuli in the classroom and being unable to tell anyone because you can’t speak. Imagine how powerless she must feel. Children with SPD are so busy tring to deal with the environment that they can barely stay ahead of themselves, and children with anxiety disorders feel as if the whole world is crushing them. The sensory problems feed the anxiety, and the anxiety feeds the sensory problems. Around and around they go, but there’s nothing very merry about this merry-go-round.”
So…without having a specific DATA to prove her point, I really do believe there is a link between SPD, anxiety, and Selective Mutism. For me, I didn’t need documented proof so much to believe my neuropsych. For the purposes of helping OTHERs, though, the documentation is helpful. I will keep looking for references to selective mutism and SPD. I can’ seem to find my Goddard book (it’s somewhere in this house. I JUST saw it recently but I can’t remember where).
Weirdly enough in Wikipedia’s entry for selective mutism, they do say that some children with SM also have SPD.
And I seem to recall that fact too – that not all SM children have SPD too. My child did. So working on the sensory overwhelm reduced her anxiety levels.
Oh, interesting…I found this article regarding specifically touch sensitivity coexisting with selective mutism
That reminds me how sensitive to certain things my daughter was – getting her hands wet, touching things she didn’t like, I don’t remember all tags being terrible, but some were.
What are the most common characteristics of children with Selective Mutism?
You can find a definite link between SM and SPD here at Dr. Elisha-Shipon Blum’s Selective Mutism Center
Hello & thank you for your site!! I have some how stumbled across your site, whilst in the search to understanding & helping my 3 1/2 year old sons SM, I have started to read through some articles with so much interest I’m amazed at how much info you have, I live in the Uk & my husband & I are struggling to find the right help for our son, we have been very lucky in the fact my sons pre school teacher recognised the symptoms, however we feel lost at where to start with helping our son, any suggestions would be more than welcome, I will not bore you with the details but my son was born by emergency c section at 27 weeks, had a very rough start fighting to survive & spent two months in an incubator, he was never a baby who could be comforted (unlike my first born daughter) he would become worse if picked up & we tried to sooth him, we put it down to not having the inital bond etc from being in the incubator but with fasination I now read about retainted primitive reflexes, We as parents feel so lost at the moment at what to do to help, thank you so much for your site x
I hope you find some helpful information. This is part of the reason why I set it up in the first place. My daughter was diagnosed at 4.5 and I had no where to find personal stories and support that I really needed. I decided that if I couldn’t find enough support for myself, I’d create it for others so they hopefully would find comfort and relief while they find resources.
Good luck with your son.
I was wondering if you followed up with therapy/assessment for any retained primitive reflexes?
Well, it’s interesting. I have not…however, I have two friends in far away states that know about and could practice feldenkrais – a gentle movement therapy. I just found this out recently.
Instead of doing the therapy…I asked the neuropsych’s office if there was an alternative I could do…because I couldn’t find a feldenkrais therapist close enough to me because she was in 2 different preschools and the nearest therapist was 45 minutes away. It was suggested that I try ballet and Yoga. So I enrolled daughter in a ballet class for a year, and bought the Gaiam Yoga for Kids DVDs – from Silly to Calm and ABCs.
If she hadn’t reversed the Selective Mutism, I would have taken her for the feldenkrais therapy over the summer. Turns out…I didn’t need to.
I need to come back and read this more fully later, I have children requiring my attention…but I just wanted to say, “thank you” for blogging about this! My almost 11yr old son has severe anxiety, selective mutism and sensory issues. We just recently began learning more and he just had an OT sensory evaluation yesterday (we don’t have results yet). I found your blog trying to search about primitive reflexes because the OT mentioned it in regards to a different son. Seeing a possible connection with the selective mutism has my head spinning…we keep being told he’s just super shy, he’ll grow out if it, etc and we aren’t seeing that at all.
Welcome Kelly, and thank you for your kind words.
I would like to contact Ms. Blythe and find out if she could re-print that paper linking the two from her book on her website. Thanks for the reminder.
I am interested in knowing what the success rate of trying to reintegrate primitive reflexes in older children. I believe it can be done, but maybe that’s just because I want to believe it can be done. I don’t give up on any child or adult with this stuff. I know it’s harder, but I don’t think it’s impossible.
Also, one thing too since your son is older, mindfulness techniques will help cognitively deal with anxiety. I will soon be posting on some wonderful resources on anxiety management for kids using mindfulness meditation techniques. Mindfulness has recently had some scientific backing. It is scientifically proven to help manage anxiety. Little children need more physical integration, because generally they can’t articulate what’s going on, but older children can employ higher level cognitive functions to assist them.
Best Wishes to you and your son.
Your site is very helpful. I am an Occupational Therapist who is beginning to use reflex integration as a tool to unlocking sensory patterns. I have used sensory integration and brain integration that have helped, but now I see the reflex being that underlying puppeteer that keeps the body reacting. I love the fact that with reflex work you can teach the child he is in control of his muscles with certain techniques I learned from Janet. My teacher Janet Oliver is phenominal. Please look her up with planforlearning.org She has a successful practice in Minnesotta but because of her concern for others she is traveling to different areas of the country. I have an OT office in GA and she did reflex sessions with 9 of my clients. For $150.00 she gave a 70 minute session with a full DVD recording of the session for the family to hear her explaination and work, a CD with the results of the reflex evaluation and home program sheets. Besides coming to Atlanta and Macon area this past two weeks she is going to Chicago area in October. You can look on her website for further schedule. She also taught a HANDLE class this past Saturday in Perry, GA. HANDLE approach coins it Gentle Enhancement which watches for signs of stress and gives many stress relieving activities. A must read is Fabric of Autism by Judith Bluestone. I became a HANDLE screener 2 years ago and have felt so blessed to share these activities with my clients as an OT. I am thankful to God for his path of discovery and know each mom out there is a detective. Someone very special to me has elective mutism and Janet told me it was due to Fear Paralysis. That is how found this website. Sharron
Wow. Thanks so much for sharing this information. I have bookmarked her website and I’d like to see about the Big 8 Reflex Course in Chicago, because that would be a fantastic course to attend. Warrenville is really within easy driving distance of us I have to figure out when my husband might be going to his craniosacral therapy course (he’s in training to be a massage therapist right now).
Thanks so much for commenting and sharing your sister’s work with me.
Hello, There are many pioneers out there. My favorite, at the moment, is the http://www.GillespieApproach.com. He opens the brain so it can breathe and the cerebrospinal fluid can flow properly. This makes other therapies work faster. This therapy can help with some PRI also.
Do you know about Bonnie Brandes? She has worked with PRI for many years and has pioneered her own method using laser/sound and acupuncture points. http://www.reflexintegration.net.
Have you heard of Anat Baniel? She trained with Dr. Feldenkrais. Her book, Kids Beyond Limits is by far my most favorite book in the world. http://www.anatbanielmethod.com
Thank you, Joan.
My husband maybe knows about the Gillespie Method, but he’s been studying under the John Upledger Method of craniosacral therapy. My daughter is now starting to have a few sessions with him, but she’s still kind of not able to settle down too much for it. I told husband to try it when she’s had an active day and is already kind of tired.
I’ve never heard about Bonnie Brandes, but thanks for sharing.
And Yes, I have heard of Anat Baniel. Thanks for sharing. I just downloaded her most recent book. I hope my library has it (I keep spending too much money on books!)