Yesterday I saw a link on the HuffPost Parents Facebook page. It linked to this article on New Republic, disputing whether or not Sensory Processing Disorder (SPD) is real or “sheer quackery” (their words). At first I just rolled my eyes and clicked away. But then I woke up this morning feeling like our story needed to be told because I am fortunate enough to have a platform for my son’s voice.
Nicholas was diagnosed with SPD a few years ago when he first started working with an occupational therapist. He is 7 now. We have lived with this disorder for almost five years. I have no medical training. I am just a mom. But I’m also a teacher with a master’s degree in education that included several graduate level courses in child development. I know with certainty the difference between “normal” childhood behaviors and what I see exhibited by my son. This is what Sensory Processing Disorder is:
It’s a two-year-old who can sit on a Sit-N-Spin for literally hours and never get dizzy.
It’s wearing Halloween shirts in May because they are the only ones that are not “too itchy.”
It’s hating every activity that requires the wearing of socks.
It’s not using the crock pot anymore because the smells are just too overwhelming.
It’s explaining to your other children why they are in trouble for their behavior, even though they have seen their brother do the same thing a hundred times without consequence. “Because you know he can’t help it, but you can.”
It’s living in fear of every paper cut and sunburn because they will be met with the same intensity as a broken bone.
It’s constantly hearing the question, “Is he autistic?” from strangers of whose business it really is none.
It’s sometimes just offering, “Yes. He’s autistic.” as an explanation in awkward situations because more than one doctor has said he may be on the spectrum, but they can’t diagnose him officially because he is too social. At least “autistic” is a word the people with the questions usually understand.
It’s worrying if you will be able to register for kindergarten because your four-and-a-half-year-old is still not potty trained at all.
It’s tears for two hours when sand sticks to sunscreen at the beach.
It’s empathy training from the guidance counselor for a classroom full of children who don’t understand why he gets to sit on a special chair and they don’t, or why he gets extra time on the swings at recess.
It’s being more worried about your now seven-year-old putting small objects in his mouth than you are about your toddler.
It’s holding down your screaming child for an enema for the third time this month so that he doesn’t get fecal poisoning from refusing to poop.
It’s being in the emergency room at midnight because, despite your efforts, your toddler has held his stool for so long that it has gotten severely impacted and is causing colon spasms so bad that they were at first mistaken for a ruptured appendix.
It’s calling every therapist in your county until you find the only one willing to see a toddler.
It’s paying $100/hour out-of-pocket to have someone recommend children’s books like “It Hurts When I Poop” and play in sand tables.
It’s toothpaste that is too spicy and ice cream that is too cold.
It’s a whole stack of envelopes on an understanding teacher’s desk. Ones that contain notes that say, “Read this, then smile at me and send me back to class.” to give special tasks to a child who just needs to get away from all the people for a minute. Delivering a “very important message” to the nurse or the school secretary can be an inconspicuous way to do so.
It’s giving permission to have your child pulled out of class by the school custodian to be mentored and do heavy work, like pushing the bucket of mop water, for a few minutes.
It’s weighted vest and blankets and chewable jewelry.
It’s checking every morning to make sure the sensory brush is in the backpack right beside the lunch box.
It’s getting very strange looks when you start brushing the arms and legs of your tantruming child in public.
It’s making up excuses to avoid birthday parties because you know they will be too overwhelming, and you don’t want your child’s behavior to take the focus off of the birthday boy or girl.
It’s two full-grown adults wrestling a child for 20 minutes to get eye drops in one eye.
It’s well-meaning adults suggesting that you medicate him for ADHD, but it’s just not that simple. There is no medicine that takes away the smells and the sounds and the feelings.
It’s avoiding trimming hair and nails until the last possible second.
It’s the terror that accompanies every bloody lost tooth and the empty space in the mouth that doesn’t feel good anymore.
It’s never, ever getting a good night’s sleep because there is no such thing as comfortable.
Most importantly,
It is very, very real.
Updated to add: Some parents have expressed an interest in wanting to know where they can find the chewable jewelry I mentioned. It is sometimes called “chewelry” and it is available on Amazon or through online stores that specialize in Autism and sensory seeking behavior. If you are looking for chewelry for your child, you can find some through my Amazon affiliate link here:Chewelry
I would also love to have you follow my Occupational Therapy Ideas board on Pinterest.
Follow Binkies and Briefcases’s board Occupational Therapy Ideas on Pinterest.
This post contains an Amazon affiliate link.
Oh, this sweet boy.
Yeah, I think we’ll keep him. 🙂
Stephanie- My mother runs a learning center and works with a lot of children with sensory processing issues. She has had much success with using a cold laser for integrating reflexes. Have you heard of this? It could be a lot of help! She has a handful of friends/colleagues who use it depending on where you live. I have some sensory integration issues myself and wish I’d had this option as a kid.
This hit home! Yes! All of it! Yes! Thank you for putting into words what i never could!!
Hi there! I just finished reading your post and I am so touched. I grew up with 2 siblings with special needs and I have worked in my fair share of special needs classrooms starting at age 5 as a “mainstream” kid. Your post was so informative and brought me to tears because i can remember all of my mothers struggles with my siblings. It is so wonderful to know you posted this so that people can see what it truly means to be the parent of a child with special needs. i just wanted to thank you for sharing this story and msking yourself heard.
Hang in there! Your story is so familiar!! My son was diagnosed with SPD around age 2, and when I had him tested for Autism Spectrum at age 4, the neuropsychologist said he was very social with her, so he couldn’t be autistic and diagnosed him with ADHD. That never felt right! Children on spectrum can be social with adults! I had him retested at an Autism Center at age 7 and got the autism diagnosis, and it was a relief! Yes, strange, but true–I was relieved to get the Autism diagnosis. You see, the school system does not recognize a SPD diagnosis, so even though my son struggled daily at school with so much, he is very smart and was squeaking by at standard, so did not qualify for much. He does now. Also, this is a selfish reason, but people “get” him now that he has the ASD diagnosis, but most people don’t understand a SPD diagnosis so it’s easier for me to explain to a friend or new teacher or a lab technician trying to draw blood, what to expect and how to deal with his differences.
Thanks for giving us a glimpse, Stephanie. I try not give those funny looks or ask those awkward questions, and it’s very helpful to gain some understanding from parents who are willing to share. You are such a gifted mommy.
Thanks, Wendy. Sometimes I do wonder if I’m sharing too much of his story, since it really is his and not my own, but then I get comments and emails from people who are helped and I know it’s the right choice for us.
It IS his story, but it’s one he’s not able to share at this point in his life. It’s also YOUR story, and sharing it is extremely helpful to many. Thank you.
amen! Every. Single. Day. Especially the explaining to a sibling part! One of my twins has SPD and they are 5. So hard for the typically developing one to understand.
Oh, that must be so hard with the extra layer of being twins!
Wow, Stephanie, I can’t even imagine what you deal with, and how fortunate you and your son are to have found such understanding educators. My daughter had an extremely mild case that resolved with a good OT program; even that was challenging. (A kindergarten teacher that thought it was bunk, refused to let her use her special seat, and gave her timeouts for falling off her chair in class made that a fun year.). People are idiots – if they had to live inside your son’s skin for 15 minutes they would go stark raving crazy.
FYI: horseback riding actually helped my daughter with much of the sensory integration issues; not sure if you’ve tried it, but I know it’s been used therapeutically with SPD kids. Besides, it’s fun!
It is always very disheartening to me when I hear about educators who deal with situations that way. I’m glad your daughter found the help she needed!
Stephanie and Eddie are phenomenal parents with the patience of 12. I commend you for always sharing and being open so that people can understand and be aware that this is real. I love your family and Nick had always held a special place in my heart. You have awesome support from family and friends. ????
I’ll never know how you didn’t kick him out of preschool after the poop smearing on the reading rug, but I’m forever grateful that you didn’t! You and the teacher at SL will always have a special place in our hearts too!
Wow. My daughter has SPD as well. She walks on her tip toes all the time. Chews her shirts, picks at her loose toe skin, orbits around me or paces while telling a story, and still covers her ears when flushing the toilet. She’s going into the third grade and I’m so glad I have her in a private school where she isn’t teased and the teachers are very understanding of her and do everything that they can to help. She went to OT for a year before they pushed us out because she loved OT and didn’t exhibit her behaviors there. She was on her best behavior and focused really hard for the 45 minute session, then sleep on the way home. I feel your pain and understand it well.
It is SO frustrating when they only exhibit the behaviors in front of you and no one else can help because they can’t fix what they can’t see. We went through that a lot at first too.
Very frustrating! My friend resorted to “taping” video or phone her child to show the doctor when words just weren’t enough.
I’m an OT with a specialty in pediatric SPD and ASD–thank you Stephanie for saying “they can’t fix what they can’t see”, instead of saying “they refused to help my child”. There is a difference, a HUGE difference, between an OT being able to help and an OT simply refusing to help (which is almost NEVER the case). So many parents have a hard time with this distinction, and blame the OT…but OTs have an ethical, standards-bound obligation to discharge if a client is not showing symptoms during sessions that we can actually treat. When a child is discharged, any OT worth his/her license will discharge with a HOME TREATMENT PROGRAM designed to elicit the same type of positive behaviors that were seen in the clinical sessions. Unfortunately and understandably, many overwhelmed and harried parents do not have the time needed to implement the home programs. So the adverse behaviors, the ones not seen during clinical treatment, continue. I have had a few parents bound and determined to implement the home programs, giving it their all, and in most cases the child who “loved OT” will continue to love those same interventions at home, and will show considerable progress, ongoing. Thanks for listening.
I also need to add…we OTs, and other health professionals, BELIEVE parents/caregivers 100% when they describe the negative behaviors, the ones we don’t always see during clinical sessions. A good percentage of these behaviors are SO typical of SPD and ASD, that we can almost anticipate exactly what a parent will be describing. We do not discount them nor disbelieve that they exist–we simply don’t always see them face-to-face. The best we can do during session, is to apply interventions whether we are seeing the behavior or not, hoping that the intervention will generalize to other environments outside of the treatment room; more often than not, OTs will do this for at least 6 months to a year before discharging.
When I do a new evaluation on a child with SPD or ASD…I am always hoping that I will see all the adverse behaviors during the eval and upcoming sessions. The more difficult the child is while in session, the more likely I will have viable interventions to apply. I always tell parents: “If you hear your child screaming while you are in the waiting room…that is a GOOD thing. Please resist the urge to intervene, because those reactions are exactly what I need to see in order to know what I need to do to help”. Once they hear it put this way, they understand.
We’ve dealt with half of these combined with adhd, I feel your struggle. The part about pooping actually brought back so many memories of sitting beside my daughter on the toilet while both of us are in tears. We’re now over that stage thank heavens. Thank you for sharing. 🙂
Ugh. I have heard so many stories that are similar to yours and mine. Thankfully, we are past that now. Sometimes it is still hard for me to listen to moms of typical kids worry about their 2 year olds not being potty trained yet. They are all, “We’ve been trying for THREE MONTHS!” and I just want to be like “Oh, honey. You have NO IDEA.”
Spd mimicke ADHD
There is a population of kids that only have SPD. While kids diagnosed with ADHD can have symptoms of SPD as a comorbidity, SPD is NOT micmicking ADHD. Please read Sensational Kids by Lucy Miller and Out of Sync Child by Carol Kravotiz. Lucy Miller runs the Star Foundation at Denver Children’s Hospital and is the leading expert in SPD and has an SPD foundation. Moreover, there is many articles and books with clincial evidence indicating that ADHD, while the symptoms are real, may be actually not be ADHD but one of many underlying issues that goes undiagnosed because if you check 4 of 12 boxes on the peds ADHD checklist few peds look further than that.
Stephanie, I am so, so glad you decided to write this post. I appreciate the glimpse into you and your son’s world, but more so I am thinking of the many struggling parents who will recognize your experience as their own. You will help so many with your words here.
Thank you Katie. I debated posting it, but I just really felt like it needed to be shared.
This is my first time reading your blog, I found it via a link on FB. My three year old son is currently being tested because he isn’t talking and they are looking at Autism for his symptoms. While he doesn’t has sensory issues like your son he does have issues. I find myself looking for more stories like these to read and see how others are dealing with their children. Thanks so much for sharing. I’ll be following your blog from now on.
Welcome, Nickida. I’m so glad you are here! Sometimes connecting with other moms, even online, is the only thing that helps. My friend Jessica writes a blog called Four Plus an Angel and shares a lot about her journey with her daughter who has autism. Check her out too!
Thank you for sharing this.
My son has a lot of SPD traits that caused a whole lot of issues when he started school last year. I actually first found out about SPD when I was researching ways to help him with his fear of putting head under water during swimming lessons. The more I found out, the more I realised that this is what we’re probably dealing with. His paediatrician (who we were referred to last year for his behavioural issues at school, and who has ruled out a number of diagnoses) agrees and so now we’re waiting for him to be properly assessed. Thankfully he has a much better teacher this year who is finding ways to work around his quirks.
School can be really hard. We switched schools this year and having a supportive team of adults around him has made all the difference in the world!
Wow, your post touched my heart. My son is 2 years old and is at the beginning of OT and ST for sensory issues and a speech delay. He hasn’t been officially diagnosed with SPD but Ive been told by my OT that is because insurance doesnt officially recognize SPD (ridiculous). Thank you for sharing your story. You seem like a wonderful mama. 🙂
It’s a long and sometimes journey, but always know that you are not alone. Please reach out if you have any questions that I might be able to help with.
I see why this needs to be shared and seen. Bless your mama heart Stephanie! I know how exhausting it is to parent a child with medical needs- and this? Sounds just as intense, heartbreaking, and difficult! Bless that little guy’s heart! I can tell you are doing all you can for him, and that will make a HUGE difference!!!
I always think of the mommas like you with children with medical needs and how hard THAT must be. It’s funny how we look at other people’s situations through a different lens. People are commenting how hard it must be for us and while, yes it is hard, we just deal with it because there is no other option. I guess that’s the same for all moms.
So timely. My son is 2 almost three and has sensory issues as well, though I didn’t know this until I had an AWESOME consult call 2 nights ago with an amazing occupational therapist that focuses on kids and eating. She explained why he stuffs his mouth full of food and why he is so picky because of his texture issues. He has not eaten a vegetable since infancy because he can’t. I read about SPD for the first time after that and didn’t really know that it was separate from autism even though my nephew is firmly on the spectrum. It made me look at the way my son crawls all over me and gives strange but sometimes affectionate head butts. I had no idea that some kids had as much to deal with on the sensory side as your son. What an awesome little kid to put up with all of that. It sounds like you have a full time job just trying to get him the best help and support. You are doing a fantastic job and thank you for sharing!
I’m so glad you found this post today! I’m sure it was not a coincidence. It can be very overwhelming when you are in the beginning stages and just trying to understand. I remember thinking through his personality traits and wondering “Was that my son, or just the disorder?” It was almost like I had yo get to know him all over again to separate his unique personality traits from the traits of SPD. I’m glad you are here on the blog. Please don’t hesitate to reach out of there is any way I can help answer questions or recommend resources.
I’m kind of unsure how to proceed because to observe my son for a few minutes at the Dr’s office, the doc will probably tell me he doesn’t notice anything so I’d have to describe a series of climbing on me, affectionate head butts, weirdness with eating textures and sideways glances and have him probably tell me I am overreacting. He doesn’t exhibit the majority of the signs I have read about, so I’m not sure what my next steps should be. I wonder if I need to force the issue or see how it progresses on its own. Is it something that gets worse with age? I’d appreciate your thoughts as someone who has been in the trenches and really knows their stuff from a mom perspective.
Hi Susan. Ask to have him evaluated by Early Intervention. They work through the school system and do free evaluations with occupational therapists. Every parents has the right to request an evaluation. It’s a federal law. They might be called something other than Early Intervention in your state, but your pediatrician will be able to refer you to whoever does the evaluations.
Thank you! I should have thought of that because he worked briefly with them on a speech delay that turned out to be a medical palate issue. I am going to follow up on this.
Reading your outstanding blog that described my daily life made me cry, laugh because of the irony of my son wanting to attend birthdays then asking to leave shortly after, then cry again because you get it. I was foaming at the mouth after reading the New Republic article and swearing my Mommy face off. ???? Reading your blog made me breathe a little more and let go of that tightness that society’s ignorance has generated in my body. Thank you, thank you, thank you. ????
Very powerful images that we know are familiar to parents of sensory kids! Fortunately, our kids also have wonderful differences, too–which often go ignored because the focus too often is on conformity, especially at school.
Nancy Peske http://www.sensorysmartparent.com
Thank you SO much for writing this! It made me cry as well. Being able to relate to someone else is vital to us surviving days that sometime seem impossible to overcome.
My daughter is now 16 and was diagnosed at 4. I am so battle weary from the way she is accepted in society, how she is treated, and from the advice of others on how they would handle her. She has come a long way and is showing great potential but looking back there were times I thought we would never get this far. Thank you for this article so few understand.
It is real. Thank you! Our son has SPD and everyday we encounter similiar challenges. You aren’t alone and thanks for speaking up. Many don’t understand because it hard to explain but walk in our shoes and our children’s shoes for one minute and there would be no doubt.
Wow, just wow. My son is almost 13 and was just diagnosed with SPD. We have seen so many therapists, psychiatrists, other MD’s and no one ever brought this up as a possibility. Even our own pediatrician poo-poo’d it. He has been looked at for ADHD, anxiety, bipolar, autistic but the SPD explains so much! I only wish we would have known about this years ago. I feel like we have so much to make up for.
THANK YOU! I actually forwarded this to my family, some of which think we are just bad parents. I am not sure if I am more exhausted from the actual work of taking care of my kiddo or the time I spend worrying and planning. If nothing else, I felt last night after reading this not so alone. Thank goodness for the internet and its way of connecting us!
yes, it is very real and we have experienced many of those same things, thank you for sharing
Thank you for summing up what life is like with an SPD child. No one really understands what it is like unless they have gone through the dirty stares or the comments of what or how you should be dealing with your child. I actually changed pediatricians because my doctors office didn’t understand my daughter and in fact were always mean and rude to her. She has made such progress due to the wonderful therapists, doctors and teachers she has now. Good luck in your journey!
I was royally PO’d by that article yesterday. I’ve been working through SPD since my oldest was 3. He was always “off” on his milestones, but it wasn’t until I broke down in the pediatrician’s office asking for parenting classes, thinking it was my problem that he was having multiple 45-60 minute tantrums a day, often involving head butting. All while trying to protect his then 1 yr old brother. It was a full time job to get him from psych appointments to OT and then finally to ST. We graduated out finally, but are still dealing with some things. We are now entering the phase of ADD, with a healthy dose of medication side effects. I’m told that eventually things should even out as his prefrontal cortex matures. I hope so. Most of the time he is incredibly sweet, and very smart. Today is not one of those days.
There is only one thing I recommend for your cute boy. Nature! A forest of trees and maybe a waterfall. The sounds and clean smell of fresh earth should always relax a troubled mind.
This must be so very hard. My son suffers from this, though not to this degree. We give cool baths because lukewarm water is “too hot.” At 5, he still will only eat baby food fruits and veggies and anything bland. And the crying when I cut his toenails… it is complete torture for him. I suffer from this, as well, especially with sounds (we go into hiding during firework season), smells, and clothing. You are right — this is a completely real thing that I hope we will learn more about and understand better someday (hopefully soon). Thanks for sharing your story, and I hope you will all get some relief. PS: That photo… what a sweetheart. <3
Thank you for this article. I have a granddaughter that was tested for Autism. Her Mom was told no but there was “something” going on. She is not to the extremes that it sounds like your son is, but some of it seems very close. I am excited to learn more so that we can learn ways to help her. She is super intelligent! I want her to be able to go to parties and functions and be included.
In 1987, I had a little boy with many of the symptoms that appear here. I couldn’t find any literature that addressed his curious disposition. I like to write, so I wrote a book for him about what it’s like to be a kid with intense reactions to things. It’s called “The Way I’m Made.” If anyone wants a complimentary copy (pdf format), please email me and I’ll send it to you. It really helped us. Now, I use The Way I’m Made at the elementary school where I’m a nurse. It helps adults understand our unique little ones. Lorri Devlin, BSN, MS, RN lorridevlin@gmail.com
So sorry that so many families have to continually defend and insist to professional people that their child is different and needs their issues accepted and dealt with. My son, now 45, had many symptoms of sensory syndrome but his pediatrician never really addressed how to deal with him. The very first issue was gagging while on a bottle…he learned to sip from a cup at 5 months old…then as he got teeth he gagged on any food with texture. He never ate a hamburger or any meat. Lived on white meat chicken and bland foods. By age 12 off of all meats…today he has 2 degrees and is a healthy well adjusted musician, record producer and Computer Engineer. Never give up on your child…hang in there and get supportive help when you need it.
This hit so much within me. My 2 year old is a seeker. It is very real and I love how you addressed it. Thank you <3
Thank you for this post. Some days I feel as though no one understands. Then I doubt myself and think maybe I’m the one doing and handling this all wrong. I NEEDED to see this today. My daughter is what the school says is “quirky”. They don’t recognize SPD there. The therapist is helping slowly but now I don’t feel so alone. Thank you.
I just saw your article via HuffPost and it really resonated with me. I understand and feel for you. I thought my son had SPD when he was around 18 months for various reasons – mainly food related, but also other things you describe. He saw a speech therapist, OT, an acupuncturist and also an energy healer that did quantum energetics/craniosacral therapist…I believe the combination really helped, but the craniosacral therapy really worked wonders. Two weeks after the therapy session, my son who would not eat any meat and hated, I mean, absolutely hated to eat anything that had to be chewed suddenly started eating meat and other foods that had texture. I picked him up from daycare one day and they told me he had eaten a whole pork chop – I almost fell over. He also gradually stopped having issues with clothes feeling funny and started sleeping better at night…as in not waking me up 4-5 times a night. I realize he was not nearly as severe as your son in the first place and he was never diagnosed with SPD, although he definitely had similar symptoms, but if you haven’t tried energy therapy you may want to consider. I wish you all the best. He seems like such as sweet boy.
I have a16 year who had severe sensory disorders as a child, taste, texture, material, smells, lights, noises, and many others, we did O/T for about a year but it was not that helpful. My son had co-morbid diagnoses in the end, asperger’s, ocd, adhd, sensory integration disorder, and several others. Today as a16 year old he is un medicated, in a regular classroom, and doing pretty well. Somethings I had to teach him, one is we can’t control the sun, noise, smells, and a slew of other things but we can co-exsist and be okay. We can take control over the texture of our clothing, the texture of our food, buy always try something new. I have found my son eating more foods that I never dreamed he would in the past, things he had tried before. I guess my point is, it does get better. Now , in our case an entirele different set of circumstances have arisen…the joys of teenage years with assorted syndromes, lol. Challenges, but challenges we will overcome, and be proud of our kids accomplishments, even more than most parents we know the extra work it takes for our kids to get there.
I really appreciated your article because there is nothing better than support from people who are going through the same things. My son was diagnosed when he was 7. The principal at his school was openly hostile to me trying to help my son with the adaptations that his OT prescribed for him. It took me forever to convince my husband that our son needed to go to another school. Finally he agreed when it became so obvious that the school was failing him. When our son started the new school he was SO happy. My son is now 15, in a regular school, and he is doing well. My advice to you is to ignore the people who don’t understand (for me that included family members,) keep advocating for your son, and one day, it will get better. My son loves the loud booms at the 4th of July fireworks now! Life is good.
I agree, it’s very real. My kids are now 16 and 19, and I now know how to deal with their SPD and how to advocate for them at school. I was lucky and found a preschool that integrated hearing kids with the deaf kids. The deaf kids didn’t make fun of my kids because every one of them was dealing with something, and were so much more understanding than the typical 3-5 year old. Also, the teacher had specialized training. Of course, that understanding and training was not there in elementary school, and my son suffered. All I can say is advocate, advocate, advocate for your son. My son didn’t wear a weighted vest. He put pebbles in his pockets of his lightweight jacket. If anyone made him spill them out, he just got more from the playground. I’ve found the best clothes at Target. Not only are their t-shirts soft and one color, but they have a very generous return policy, so that you can buy lots of different pieces of clothes and return what your child doesn’t like. Also, look up 2E or twice exceptional groups for support, or PEGS–parents educating gifted students. I went to a PEGS group and found out that neither my kid nor I was crazy, and got lots of good coping ideas from these other parents. Mainly I found that I could talk about what my kids were doing without getting weird stares. Thanks for your wonderful article.
Hang in there! Yes, it is totally real, but things ‘in your head’ take a while to get through the preconceptions.
When the occupational therapist explained it, my response was, ‘oh, that has a name?’ I am overstimulated and can not stand massages or people touching my arms – I became good at massage as a defense. My husband and son are (mostly) understimulated, and it’s amazing to see them come completely alive with enough stimulus. We did cut out lactose, since my son and I are both lactose intolerant, and that has helped, but the SPD is probabl lifelong. Keep an eye out for anxiety and OCD, they go along with SPD a lot. SSRI anti-depressants are effective in managing it.
Sounds like you’re doing everything you need to do. Keep going and lots of hugs to you and all your family.
Look on YouTube for “Autism is Treatable” video. I know, he is not autistic. Nevertheless, it may offer you ideas for how to help your son. Good luck.
There are many, I realized. This is the one I meant: https://www.youtube.com/watch?v=4TBaUfltISo&app=desktop
Have you ever read Dr.Daniel A men’s books on ADD? My children have had similar behavior and the nutrients supplements in these books helped. The premise is balancing brain chemistry though nutritional supplements. I recommend the book magnificent mind at any age and healing add.
My youngest, now 7, had issues with our pet birds. While homeschooling her she would scream with her hands over her ears that they were too loud. So we moves them into a spare bedroom, and finally removed them from the house. Was told by a doctor that she didn’t have an “issue” because she didn’t have an issue with the vacuum running.
She had a fascination with ants from 18 months of age…we weren’t allowed to kill them in her view if she found them in the house…she has a huge interest in all things bug/insect. She found a documentary on Netflix about red ants, made the whole family watch it and then at the end asked how to say red ants in Spanish…because they are from South America.
And she draws horses, horses running, flying, jumping over jumps, with and without jockeys – completely decked out in riding gear…detail-oriented.
Had her tested for Aspy & Autistic spectrum and was told she wasn’t on it. But she is so quirky…
The youngest of four, my older three are no where near what she is like.
No one tested her for SPD, but they did for OCD… She did 2nd grade in school, and even on stronger ADHD meds, she still would organize her crayons by color and shade before doing what her teacher wanted her to do…if she had just finished with the box or something got bumped in her box.
This post just showed up on my Facebook feed. The post and the comments really strike a chord.
See, I sent my almost 5 year old off to Kindergarten in diapers. The world didn’t end, though sitting in the IEP meeting where they told me she had to start Kindergarten or dis-enroll from school it felt like it might.
She doesn’t have a diagnosis. She used to have Failure to Thrive and Feeding Disorder, but that’s “better” now. She has “sensory issues”.
When she needed glasses, we bought her Transitions, and this has helped her light sensitivities tremendously. She still has issues with food textures and temperatures, but thanks to wonderful feeding therapists, she has come a long way. The other day, she actually drank something other than water.
Right now, she’s at sleep away camp. I know she’s not going to wash her hair, because I’m not there to make her, and she hates (HATES) putting her head in the shower.
Friends, family, random strangers are sympathetic, but I can tell they don’t really understand.
I know it’s real.
Thank you do much for writing this and for all the others who have added. I have a little boy who has just turned 7 and have in the last year thankfully got help for him with a great OT. I find it so hard trying to explain myself to people and it was impossible to get him help at school. I have been home schooling for the last 3 months as the school would not recognise he needed help. I have been saying since he was a toddler that there is something that makes life harder for him. It is exhausting trying to get help and understanding. All I want is to make my child’s life a little easier. I’m sure no one believes me when I try and explain what life is like and so reading this makes me feel both sadness for those who suffer but relief that we are not alone. Thank you.
Eye drop trick: have the child close his eyes, place drops on relaxed closed eyes. Then have the child “blink” several times to work the drops in.
I knew a mom with a son that was diagnosed with autism until they started diagnosing sensory processing disorder. He was a sweet child and he had a “sensory brush” too. Some of these things that you described resonate with me and members in my family but we all function. I wonder if my dislike of using nail scissors because my fingers dont feel right and hatred perfume is just a small piece of what people with sensor processing disorder experience. Thank you for sharing this. I am sure I will meet people in the future that need to read this post.
Just clicked over to this post from the link in your most recent post, and wanted to chime in. I’m the mom of a kiddo with SPD as well (she’s 11 now), adopted following what sounds like a similarly rough start to life. Thank you for posting this. The more people hear and read about SPD, the more “normal” it becomes. It certainly is real, and it takes all of us parents, family and other advocates (OTs, teachers etc) to help spread the word so it isn’t taken for “sheer quackery”. I was so disappointed when it didn’t make it into the latest version of the DSM….
So anyhow, thanks for taking the time to write and post this. <3
We are SPD in my home, too. Our living room consists of exercise balls and bean bag chairs. And, rubbermaid boxes filled to the rim for pushing therapy. I haven’t started with weighted clothes/blankets. Where do I find those?
I am sorry I am just now replying to this comment. I was a bit overwhelmed by the volume of the response I got to this post at the time, I suppose . Weighted vests can be purchased from websites like Fun and Function. https://funandfunction.com/weighted-compression-vest.html
The brushing of the arms and legs. Yes.
Just thank you! We too deal with sensory processing difficulties with our 5 1/2 year old son and saw signs that something wasn’t “quite right” very early, starting with difficulty suckling on his bottle. It is very really, and we need SPD to be recognized as a diagnosable disorder so that further study and treatment can be funded.
I just found your site and it is touching my heart. We are dealing with similar issues with my son, but have used diet to improve his issues greatly. Please read the book “Gut and Psychology Syndrome” (http://gapsdiet.com/). These issues are cause by physical problems in the body, and can be improved with the right diet. I wouldn’t have believed it if I hadn’t seen it with my own two eyes. I know you probably receive all sorts of suggestions, but please just look into this, I have nothing to gain, just wanted to offer some help as your story is so touching and you sound like an amazing mom!
Just want to say my kiddo is exactly the same. Diagnosed SPD and is also on the spectrum. He is super social as well. I wouldn’t let doctors say it’s not this or that. Keep doing what your doing. It’s a struggle; but your a good Mom doing the best you can <3
My son is 5 and has SPD but a somewhat milder form than what you have described your son has. However, WE just went to the doctor because he screams everytime he poops. He just told me he was constipated…is there another reason?
I am struggling with this article & with all the comments because I really don’t feel like the reality is getting stated here. I feel for your child & for what you may be going through, but coming from someone who actually does have SPD, I am saddened that you would place all of your son’s behaviors in an SPD box & call it good. He may also have SPD, but most likely his behaviors really are more on the autistic side, perhaps Asbergers, which is far different from SPD. For those mothers who may be reading this & think it reminds them of their child, do not label your kid with SPD. These behaviors are not SPD. Please do your research & get proper diagnosis. Don’t base your findings on this very sad, but inaccurate article.
Thank you! You’ve inspired me to get a referral for ot. My daughter is almost 11 & this could’ve been written about her! I’m blown away.
Wow! Thank you for giving me a place to be reminded I’m not alone. Our 6 year old daughter also has SPD and for someone behind a computer to say it’s not real makes me angry!! Please please tell me though, where do you find chewable jewelry?
My daughter is on the opposite side when it comes to touch, she doesn’t feel pain as most kids do, needs more physical touch than is “normal” etc. I could also add to this list things like….It’s giving any stranger that smiles at you a big hug because hugs give her the sensory input that is needed. It’s getting an abscessed tooth because by the time she says a tooth hurts it’s too far gone to just have a filling. It’s always asking for gum or needing something to chew on before she chews her fingernails to the quick just for something in her mouth.
Anyway, just really wanted to write this to say thank you for reminding me there are others out there who work through the differences every day also.
I am so glad to hear that I was able to bring a sense of comfort to you in some way!
The chewable jewelry is called “chewelry” and you can buy it on Amazon or from other online sites that specialize in Autism and sensory seeking behavior. If you would be interested in using my affiliate link, you can find some on Amazon here: http://www.amazon.com/gp/product/B00WQB4I0E/ref=as_li_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=B00WQB4I0E&linkCode=as2&tag=binkiandbri01-20&linkId=J2EN2VBUVWXRD7FJ
What a beautiful post. Thank you for sharing your story and your son’s experience. You have so much strength and compassion. I admire you both.
Thank you for sharing
seriously? wont diagnose him with autism because hes “too social”!?!? what a load of hooey. we never got any of that for my son – hes TOTALLY social, will talk to anyone and hes the kind of kid who wakes up in the morning just ITCHING to talk to SOMEONE – ANYONE and he will go on and on because hes so passionate about things and just loves to chat!
yet was still diagnosed with autism (aspergers),
I, too, have a Masters, mine in Special Education…I am about to request an occupational consult/evaluation, something for my child. I believe he has Sensory Processing Disorder. He will start Pre-K this September. He refuses to potty train, but that is not it. Crowds, noises, food textures, tantrums, so many characteristics I see that are not “normal”. He does not respond to normal positive reinforement, consequences, etc. Eye contact is hard for him. From my experience he is not “typical” autistic, but how the label the “spectrum”, I don’t know (been out of the classroom for 10 years). He is so awkward in social situations (I realize he is only 4). His Dad keeps pushing him and is sure he is being rebellious or difficult. I don’t think my husband believes there is anything more wrong with my son other than him refusing to poop, refusing to socialize, and immature because he pitches temper tantrums all the time.
I was just referred to this from FB. I know you wrote this years ago, but here is a belated thank you for sharing! I have a 24 year old son with autism, but I am almost positive my youngest daughter, aged 7, has sensory processing disorder (as do I, much milder than you describe). I took her for an evaluation when she was about 1 1/2 and the doctor essentially yelled at me, even though she admitted my daughter had some weird tendencies with swinging and spinning and a few other things. Now I wonder if she was one of those doctors who thinks SPD is not real??? My daughter does so many of the things you describe. We are still dealing with the pooping at the age of 7. She gets mIralax every day, even though she eats a super high fiber diet, because she doesn’t eat meat, of course. I’m super sorry that your son has SPD, but I was kind of relieved to hear that about the crockpot. I have a super hard time with the crockpot. As a mother, I love how easy it makes things, but honestly, by the time I have smelled food being cooked in the crockpot all day, it makes me nauseous just to think about eating the food. (Also, on a side note addition to what someone said about being social and autism, people with Asperger’s are known to be quite talkative, but if you watch them, they aren’t having reciprocal conversations, meaning that talk a LOT about what interests them, regardless of whether the person they are talking to is interested in the topic or not. Of course, Asperger’s has been taken out of the DSMV now anyway… Not implying your son is autistic, just that the social issue is a bit more complicated than your doctor may realize.)
> more than one doctor has said he may be on the spectrum, but they can’t diagnose him officially because he is too social
We had a friend who is a SpEd teacher who now specializes in ASD tell us that when we were initially seeking a concrete diagnosis for my now 12 yr old. “He can’t be on the spectrum…he likes to hug people WAY too much.” is what she said. And I legit almost facepalmed. Yes. He DOES hug..and touch..a lot. Because he has sensory seeker. We didn’t know WHY he preferred (as an toddler) to barrel roll across the floor instead of crawling or walking. We figured out later that it must’ve been giving him the sensory input he wanted. Before he was diagnosed, I’d never even HEARD of Sensory Processing Disorder.
Thank you so much for sharing! My son was 4 when he was diagnosed with Sensory Disorder and even though he is very social he was 5 when diagnosed as being High Functioning Autistic. He was put on resperadol and life was so much better, he still slept with his weighted blanket but we no longer had to cover his ears when drying his hands in a public bathroom. Three years later Covid hits and all the therapy and medication… he started having outburst again. He has a new psychiatrist and therapist and they have also diagnosed him with intermittent explosive disorder. He was doing well but each growth meds need adjustment. How has your son been through all of this?
Hi Rikki, yes that all sounds very familiar to me. I’m sorry you are also familiar with the struggle and that Covid has made you see some regression. All the best to your family!