You know those really itchy sweaters you had when you were a kid? You always seemed to have at least one. You hated it, but maybe you loved it, too because it was your favorite color but then when you put it on, you realized it itched SO much. You didn’t wear it often, maybe only for picture day or because your mom made you. Sure, she gave you an undershirt, or if you were lucky, a turtleneck, to wear underneath so it wouldn’t itch so bad. But if it touched your wrists, or the undershirt rode up a bit and the sweater touched your belly, you were tugging away at it, trying to stop the itchy sweater from having contact with your skin.
That is how my 6 year old daughter feels. But it’s not about a sweater. It’s about all clothing. Every sock, shoe, pair of underwear, and every seam inside of every piece of clothing she owns feels like that itchy sweater, only worse. It is more than uncomfortable, it is painful. She has Sensory Processing Disorder.
It wasn’t always this way. She had sensitivities, yes. Preferences, sure. She didn’t like jeans or empire waists or anything that felt tight around her middle. Those things were easy to work around, we simply didn’t buy them. She had a wardrobe full of leggings and skirts and cute tops.
But then, early this fall, something happened. I don’t know what triggered it, but suddenly she could not stand her clothing. Getting dressed became a nightmare for her. It took a very long time. We had to remove a lot more items from her wardrobe: any shirts that had something sewn onto the front of them (the stitches on the inside of the shirt touching her chest or tummy were unbearable), tights of any kind, sleeves with elastic. We learned which clothing company made interlocking seams and seamless socks and really, what is wrong with wearing pajamas out in public when you are only six years old? We do that a lot now.
It has been painful to watch our beautiful, happy, creative, joyful daughter locked in this intense struggle. But one thing became very clear. We needed to get help so that we could help her.
Each day it is a process to help her get dressed and get used to a new, clean set of clothes. Dressing is very difficult and uncomfortable but with the changes to her wardrobe, on a good day, her body adjusts within a few minutes. The next challenge will be when she has to change positions to sit in her car seat or in her chair at the dining room table or lay down on her bed at night and she becomes aware yet again of the feeling of the clothes on her body, and the extreme discomfort starts all over again.
I knew what this was. My older son had struggled with a less intense bout of clothing sensitivities related to SPD when he was an infant and a toddler, pulling off his own socks and those of everyone else, because, he figured, why would anyone wear these torture devices? But SPD for him was very different than how it presents with my daughter. Although they are both sensory seekers, they use different methods to increase the input into their nervous systems. My son would seek out stimulation by crashing into things and people constantly, banging toys onto any hard surface to the point of damage, and sometimes banging his own head. He doesn’t do these things anymore. He is still a sensory kid, but he’s learned a lot about how to help himself and when he meets new sensory challenges, we work on that.
So, I knew what to do. Sort of. Out came the books I had read a few years before, the internet searches for information and resources, the long talks with friends whose kids struggled with similar issues.
We also began to modify my daughter’s diet. And the search began for an Occupational Therapist covered by our insurance plan, who could assess and treat her and help my husband and I to understand how we could better help her at home. We are getting help for this but it is a process. We go to the Occupational Therapist every week and we have begun to embark on an intense “sensory diet”, a plan of exercises that we do at home each day.
I am given another reason to be grateful that we homeschool. It has allowed us to easily modify our schedule to go to OT appointments and to do exercises at home. We can slow down our academic learning. There’s plenty of time for that. We need to do this right now.
And in the meantime, she wears pajamas a lot, and often, her summer sandals, even in December, because she would rather endure freezing temperatures than the discomfort of putting on any type of sock or closed shoe. We limit our time outside on cold days, we cover up with beach towels in the car on days when coats are just too difficult.
As I try to focus on helping my daughter as much as I can, I also deal with my own guilt. I just flashed back to a moment. A moment when I knew everything about being a parent. I was pregnant with my first child. And I was an expert. I had read parenting books. I had scrutinized the parenting methods of friends and family members. And I was sure that I knew better.
I was in line at a store and the woman in front of me had an older toddler in her shopping cart. He was wearing a diaper and a pajama top and a pair of boots. Why couldn’t she just get this child dressed?, I thought. How hard is that? Now, I think, well maybe he had sensory issues or maybe he was just being a toddler, asserting his independence, and his mom was just being smart and rolling with it.
I’m cringing now. Yes, I was one of those people, annoyed by crying kids on airplanes, totally lacking in compassion for any parent with a child in meltdown mode or any child doing something out of the “norm” for their age and stage, whatever in the world normal is.
And that was a slippery slope because it led me to this with my own children: Not being able to accept when they don’t do things “like other kids”, like my friends’ children, or what I thought they should be doing, without a fuss: wear a fancy outfit on a holiday or shed the training wheels on a bike at a specific age or respond to behavior modifications like a reward chart. It took way too long for me to realize that there was more going on for them. I’m getting better. But it’s a process.
There is more with my daughter. She can’t button, zip, snap, tie shoes, open snacks, or buckle her seatbelt. Her four year old brother has surpassed her on some of these things. For a long time, I thought it was because she was simply refusing. She wanted to be the baby. She had been ousted from her role as the family baby to the middle child and, her refusal to zip her own coat, I thought, was her protest. Because that is what she said. She said she didn’t want to do these things, she wanted my husband and I to do them for her. And for a while, we did. We invented fun ways to make it a game and tried to get her to dress her dolls or the dog or any way she could learn to practice these tasks. But it wasn’t working.
And then it seemed like she just gave up. In frustration, I would exclaim, “You need to do this! You are six years old!” And now I cringe, because I know that it isn’t because she doesn’t want to do these things. It’s because she can’t.
She has the strength in her hands to do it but something happens on the way from her brain to her fingers, that disorganizes the sequence of thought and activity and makes it impossible for her push a button through a buttonhole or unlock the deadbolt door to our deck or pull off the foil on an applesauce container. We’re working on this now, too.
I regret telling adult family members not to do things for her, not to baby her by putting on her socks for her. I regret that my other kids have heard my frustration and now I hear my 8 year old parrot my words and tell his sister “You’re six, you should be able to do this!” when he does something she cannot do, like make legos go together the way he wants them and work the remote on the tv.
Here’s what I wish…I wish I would’ve known better. I wish it didn’t take me so long to get to the point of accepting my children more easily than taking away a privilege. I wish I hadn’t complained so much about their behavior to my friends and family. They aren’t trying to drive me crazy, it just feels that way sometimes.
So if you see my child, or anyone else’s, in public, and…
- they’re wearing clothes not appropriate for the season
- or they’re not yet riding their bike without training wheels
- or they can’t make a hula hoop go around
- or they won’t put on dress up clothes
- or it seems like their mom is doing something for them that you think they should do for themselves, like opening their snacks or fastening their bike helmet…
Will you practice acceptance for that child and compassion for their parents? I’m trying to do it too and I don’t always get it right. But I’m trying.
If you’re not sure if SPD is a “real thing” or if you think that maybe it’s just the next label being sold to parents and slapped on kids, let me share with you my daughter’s own words. Keep in mind, we’ve only begun to explain SPD to her. She just knows that her clothes bother her so intensely for a large part of every day and this often prevents her from enjoying the things that she loves to do. Normal six year old stuff like playing with her dolls or riding her bike or going to her dance class. And she’s very aware that most six year olds don’t get bothered by their clothes the way she does. She worries aloud that this will never get better. We reassure her that it will, that we will work hard to figure this puzzle out and we will never, ever stop helping her.
Mommy, I’m tired today because I stayed up late last night looking out my window for a falling star. When I see one, I’m going to wish that my clothes don’t bother me anymore. When you wish on a falling star, does the wish come true right away? Or does it take a while?
I used to wish I had a lot of money so I could buy whatever I wanted but now I just wish my clothes would stop bothering me. What if they bother me for my whole life? What if they bother me even after I’m dead?
Please excuse me while I go clean up. My heart just broke into a million pieces.
We’re in the beginning stages of understanding this and helping our daughter. If you have experiences or resources to share that you think might be helpful, we’d love to hear them.
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I understand SPD. I have one at each end. It is never any fun. It has taken a while to get Rose to wear clothes. I wish you luck with all this! I really do feel for you.
Julie- That wish on a star breaks my heart. I’m so glad I got to meet you in person- and I never knew this was one of your struggles. I’m passing to my friends who struggle with the challenge of raising kids with SPD…..Thank you for this post….Tricia
Awwww, Julie – sending you a huge virtual hug! Please stop beating yourself up. You had no way of knowing and you thought you were encouraging her independence. Who could fault you for that? You’re a great mom and your love for your kids comes through loud and clear in every post.
For your daughter, Hanna Andersson has almost entirely organic cotton clothing and very soft pyjamas with loose waistbands and flat seams. Even my daughter, who has the same thing as your daughter on a lesser scale, will wear them. Except for the underpants – be warned, they’re soft but they come up waaay to high for a kid who doesn’t like clothing to touch their belly.
My friend Trish posted this to her Facebook, and I really appreciate her for doing so. For so long, teachers, some doctors, and even my son’s dad were insistant that my son Michael was ADHD. We moved recently and have a new pediatrician, and after a thorough questionnaire and some observation, along with one kind and determined counsellor, the pediatrician stated Michael’s behavior isn’t consistant with ADHD, but instead is a Sensory Integration Disorder. I’ve been doing a lot of reading lately, and I’m pretty sure he is a Sensory Seeker. Your description of your son is a spot-on description of mine. We start Occupational Therapy after the new year. I am so glad to have read your struggles as similar to mine. I also regret every time I thought “Maybe so-and-so is right and Michael just needs a good spanking.” Or every time I’ve just gotten so mad and yelled at him or pulled a guilt trip. Thank you so much for this post.
Yes, stop beating yourself up. You are a great mom! You have already discovered what is wrong and how to help your children. That is amazing. You are researching, taking her to therapy, trying your best. It is never easy having a child with any disorder – but you are a special mom given a special gift. You are the right mom for your precious children.
That was beautifully written. I hope you’re able to get to a happy place around these issues.
Glennon from Momastery just posted a status on Facebook that applies here: “If God needed kids to have perfect parents, there’d be no kids. God chose you. You’re just fine.”
Beautifully written! I did not know she was having these struggles but I do know that you are a wonderful mother, whether or not there are things you wish you could rewind and do again. Because who among us doesn’t wish for a do-over, especially since, as the old saying goes… hindsight is 20/20. My only suggestion would have been a good OT with a great sensory diet plan and you’re already there, so I hope things take off from here. Her words gave me chills… and tears. I hope she gets her wish soon!
You are a wonderful mother. I have no doubt that through your daughter’s journey with SPD that having you guide her, advocate for her and simple be there to “get it” is the absolute best thing for her.
we have a lot of little sensory issues too but I don’t know that I would notice them if I hadn’t had experience as a teacher with students with SPD before being a mom. I think it’s wonderful that you are so honest about your previous thoughts about parenting. I like to laugh at advice I gave a friend with a baby about sleep training ( something I could never do as a mom and still have a 6 year old climbing into bed with me often) we all did that don’t kick yourself too hard. You are clearly a wonderful amazing mom.
Oh honey, this is beautifully and heart-achingly written. Remember the adage, “When you knew better, you did better.” In other words, you could only do the best you knew with the info you had at the time. Now you not only have new info, you are sharing it with others. Your daughter loves you implicitly and wouldn’t trade you for another mommy – you are the perfect one for her! Yes, you lose your patience from time to time, but I’ve always said you are more patient than I am. So chin up, you are doing well and soon QB will have new coping skills for her SPD and clothes will become bearable again. Hugs to all of you!
I feel all this deeply. My eldest has SPD and Asperger’s and exhibits a lot of similar behaviours. We’re lucky that he isn’t affected by clothing as deeply as your daughter, but he is often overwhelmed in pubic (mostly school) by noises, smells, touches, etc. He wears build construction-type ear protection in assemblies. He is really unpredictable if hugged or grabbed or touched unexpectedly. He may never have the coordination to ride a two-wheeled bike. (‘Poor motor planning’ is what we’ve been told). I’m two and a half years into this process and by no means a pro, but always willing to talk to a parent who’s just starting. Here’s a post from my blog about my little guy. http://www.po-ho.blogspot.ca/2011/04/unique-quirky-infuriating-lovable.html
Good luck with your unique child. I remember pre-children (you know, when we were ALL experts on child-rearing) saying to my husband “I sure hope we don’t have boring children”. Haha… sometimes you get what you wish for.
I have a son with Klinefelter’s Syndrome. It is not like SPD, but it is a factor in how he is “different” and “slow” in some ways. He did get yelled at by a coach years ago because the coach felt that he couldn’t do pushups due to he wasn’t trying hard enough. It was hard to watch… no Mr. Coach, he HAS NO TESTOSTERONE and therefore very little strength. It is an “invisible” disability, and people just don’t try to be compassionate AT ALL. Those people are very annoying
What an enormous kindness you’ve done for the wider world — to share from your heart and to bring compassion and understanding from a first hand perspective, on something that is outside the experience of many. Your learning curve and experience will be a beacon for many. Your personal insight and articulation of ‘reality’ coupled with the keen insight from your daughter speak volumes.
I’m sending a virtual hug for the process ahead.
Debbie Clement
Debbie said it perfectly. This is a beautiful post, thank you for sharing. I think your honesty and bravery will be an inspiration and a source of comfort for many.
Our 9 y/o has SPD and our 5 y/o does not. It’s hard wh at a en the younger one can do something that her sister can’t yet, especially when she points it out to everyone. I’ve learned to have different expectations for each of our children and work to NOT compare with their peers, for opposite reasons.
i have found my experience to be a blessing because sometimes it forces us to keep our life calendar less cluttered and putting family as the top priority. It’s also been a blessing because I’ve been able to share with friends who are in the early stages to encourage them. When we first were diagnosed we knew no one else who had been through it. I think many of our friends thought I was just a unique first time Mom. And because she was our only child, it was all I knew as a parent and we jyst went with the flow. Daughter 2 has been advanced
Thank you for your bravery in sharing your post. I think it will be helpful for many! I will be using it as a resource for parents that I work with!
Hugs!
You are an awesome mom for getting your daugther the help she needs, don’t beat yourself up for it. This post is very well written and sure it will help alot of people. My heart goes out to you. When I read what your daughter asked you it brought tears to my eyes. As a mom all we want to do is help our kids, and you are doing that. BIG hugs to you.
Oh you wrote so beautifully I feel like I’m in the trenches with you! BIG HUG!!! You are a great Mom, just not perfect {but then again none of us are!} Good for you for getting help and making changes to better help your daughter. I hope that wishing star works for her =-)
Merry Christmas!
Beth =-)
Debbie said it so beautifully. I really appreciate you sharing your post with me so that I am able to learn more about sensory disorder processing. I hope to remember this when I see those kids in line in PJs or sandals in snow or without socks. I’ve heard of this (a little) but never met any child with this kind of sensitivity and now you’ve educated me to be more sensitive and compassionate.
You are doing an amazing job with your children! Please know that in your heart!
Oh, Julie, I’m so sorry you are struggling. I had no idea. It sounds as though you have a plan to work on this, and you are doing a great job. I don’t have anything helpful to offer, just a Thank You for sharing this with us.
Julie–So sorry to hear of your challenges, but I can promise that things will get better. My youngest, who is almost 17, has special needs and a cadre of diagnostic labels, including Sensory Integration Disorder/Sensory Processing Disorder. When she was born it took a few months for me to finally find someone who was able to hit the nail on the head and give me a reason for her incessant crying in any environment that had more than one “sensory stimuli” going on. She was considered severe in her sensory challenges (touch, sound, lights) and from age 3 months to 2 years we implemented a stringent treatment plan, which included OT, specific therapies for SI (which were just in the baby phases of being identified back then
) and a desensitizing method that may now be out of date called the Wilbarger Brush Joint Compression Therapy. Weighted vests and blankets were purchased…until I figured out how to make them and then we just made them so she could actually look like a little girl and not be in tan all the time. 
Over the years we were able to back down the SI specific therapies and although I still have them, she hasn’t needed to use a Wilbarger brush or weighted vest or blanket in over six years. She still has sensory challenges and although she has learned how to help herself cope and physically deal with them, she still wears her socks inside out, prefers yoga pants to any other, does not like tight shirts and lives in baggie sweatshirts or sweaters in the winter and oversize Ts and wide shoulder strap tank tops in the summer. She still hates gooey substances and anything that feels like clay or play dough. She can’t stand having her face, head or feet touched and I’ve gotten to where I can brush and style her hair in about two minutes before she has a melt down. She is able to go out in public and have fun with family and friends—although she still always has her hands over her ears and will pull her head under a blanket or into a pillow on her wheelchair if things get to be too much. She hates things over her ears, but is starting to get to where she can wear those super soft ear muffs you can find in the stores in the winter. Things have gotten better…and they will for you…just hang in there. 
You are doing a fantastic job…the biggest thing you can do is just assure your daughter that you’re there and you’ll get through this together no matter what. You’re doing that…the rest will come. 
Just a few things I’ve learned over the years that you may already know, but if not, hopefully they can be of use! First: If your insurance wants to stop your OT after a certain amount of visits due to it only covering therapy for “rehabilitation”, obtain a letter of medical necessity from your pediatrician (or neurologist, if you have one–that will carry more weight) explaining that SI is a neurologically based condition and treatment is not rehabilitative. Often times that will eliminate the “rehabilitation” factor with your insurance. Secondly: If your kiddo has challenges aside from SI, she may qualify for special education services under Federal law which would allow you to acquire OT for her through the local school district at no cost to you. I know you homeschool (I do as well) so you will need to decide if you want to go this route or not I have for years and so far have had no challenges with the fact that I homeschool…my kiddo still receives therapies through the District. Third: It sounds like you already have the books out there on SI…a few of my favorites were the “Out of Sync Child” and the “Out of Sync Child Has Fun”. My daughter enjoyed “The Squirmy Wormy” when she was little, which is about a little boy who has autism and sensory integration disorder. It is written for a child, and even though my kiddo isn’t autistic, it was still very helpful for her. “Arnie and His School Tools” is also a wonderful book—and one that I provided to a few family members who had a difficult time understanding why my daughter did what she did. I use a lot of role playing in helping others understand my daughter’s challenges, and this has been helpful for us. At the risk of this reply getting way to long, I’ve pasted one of the analogies (below) I’ve used to explain SI to our family, friends and social groups. Feel free to use if you think it would be helpful to you and your family.
“Sensory Integration Disorder can be most appropriately described for easy understanding as: the brain’s inability to process and regulate control of multiple external stimuli effectively. As a parent, the best comparison description that I have ever heard was: Sensory Integration Disorder does not allow a child’s brain to effectively decide which outside input it is going to pay attention to and which it is going to ignore. The result is a neurological misfiring wherein a child is physically incapable of independently handling more than one sensory related stimulation at a time.
One of the best analogies I have every heard is: Imagine yourself in a room with the t.v. on, someone actively playing a computer game, someone else listening quietly to the radio and the dishwasher on. A child whose body appropriately handles sensory input would tune out every sound, movement, light and sensation that was not specifically related to what they were paying attention to. A child who has an impaired sensory integration system pays 100% attention to every sound, every movement, every touch and every change in lighting. Now imagine yourself in this same room. You hear every click of the keys on the keyboard to the computer, every beep and sound the computer makes; you hear every word, sound and hum made by the t.v.; you hear every note, tune and background noise individually and specifically on the radio; you hear the dishwasher as if there were a microphone up to it; you see every light and object movement on the computer; you see every light and object movement on the t.v. and if that weren’t enough, you feel the tag in the back of your shirt, the material of your pants laying on your legs, the seam of your socks, the pressure of your shoes and the clinginess of your shirt to your arms. And….your body is hearing, seeing, feeling all of these sensations individually and completely as if they were the only ones around at a 100% capacity.”
Your children are so lucky to have a mother who stands beside them when faced with a challenge instead of looking the other way. I so appreciate your honesty. Beautiful post.
Oh, Julie! Like others have said, this was beautifully written. My 6 yr old daughter also has SPD. It’s been a journey and you can read our story on my blog, acraftymomslife.blogspot.com . I wish I had seen the signs sooner, too. But, like you, once I knew what it was, I took the bull by the horns and got my daughter the helps she needs. We had some major battles before we were able to really make some headway. When I get down about her SPD or feel challenges are resurfacing or we’re facing a new issue, I remember where we were and how far we’ve come. I haven’t read all the comments so forgive me if these have been mentioned, but you asked for resources…I could write a whole blog post on resources alone, but here are a few of my most helpful ones: The Out of Sync Child (book), The Out of Sync Child has Fun (book), The SPD Blogger Network (a blog with various moms all posting on SPD), Fun and Function (a store devoted to products for kids with Sensory Issues). And, your biggest resource will be those friends who get it, the ones who have kids who have SPD, too. Just being able to pick up the phone and hear another voice saying “I get it” is absolutely priceless.
I had no idea. Never heard of SDP. Here’s an idea for Queen Bee …. try wearing clothing inside out. Flat seams.
Oh girl, don’t beat yourself up for past mistakes. Learn from it like you are doing, and help your daughter. Thank you for sharing this.
Hello
You are not alone. Your children remind me of our 10yr. daughter who has gone through this SPD process since she has been 4yrs. old. I felt and knew something was going on and yes I did start researching the pj wearings, clothing, no socks, only crocs in all weather, not wearing coats or in the car til this day, transitions, going somewhere new or not being comfortable people, family touches or hugs, kisses goodbye. She is very verbal, yet we were to late to find out when she was young to tell her about her sensory. We have had our talk about sensory, yet she refuses to accept or want to understand why her clothes feel itchy, or want to attempt to try different clothes on knowing her skin will not accept any other clothing than her one shirt, skirt, and one colored panties with no elastic. We recently, started homeschooling this year, it was very well needed. She does not want to disappoint anyone, she loves to be trueful, ask when needed, and all around she is a daughter that will not tell a lie, she honest, loves you and sometimes can not show you physical or verbally.
She has not grown out of her clothing issues, has made progress with transition if she knows what is going on for that day, starting to try to tie shoes, zips her coat when she goes out to play (winter) fur boots no socks, skirt, shirt, fall jacket, hat, mittens. No fuss. High tolerance for cold. Learned how to swim this year, trying to ride a bike with sturding training wheels (try a balance bike), wears fuzzy sock only, wears a “Hanna Anderson” halloween kitty (soft backing on inside of gown), leaves the dressing for the last thing to do in the morning. She has been to therapy during school and it was a bad introduction with her sensory diet. Surgical brush very soft to us, but for her. We have found out that it is very important how our daughter recieves her first experiences, on a good note. They have a wonderful memory! Telling our families not to hurt their feelings; allow our daughter to come to you not forcing her to give hugs, bye, kisses, or pick her up.
During time, she did a 360 and started saying goodbye, high fives, hugs. I can still remember to this year, when she gets hurt! She hids and does not let anyone touch her, ask her, see it or give her lovings. We work on it! She has sensory SPD, is a sensory seeker (spins in a chair, bounces on her trampoline with music, playdoh, draws, video games, tells stories, rhymes with words, loves to hear scatic on the radio, or orchestra music) These days it is nature and animals are true love. Tiny play with stuff animals, making up stories. Everyday is different! Everyday, she does the same routine, yet needs reminding. Needs her snacks inbetween her meals. She loves the holidays, yet being gone from home all day sometimes is too much.
Somedays, I understand this is a lesson I need to understand and learn. God is allowing me to understand through my life with our family issues. I knew life has curves and I have a hard time making straight lines, yet with a little help from our daughter life seems very simple life. I have patients lots of it yet I do exploded sometimes in the heat of the moment and learning to walk a way when I get heated or sucked into a disagreement with our daughter. She is too good. I could go on and on with life, yet I’m finding out if I take one day at a time with the struggles we deal with, she will turn out well rounded. This year she was diagonosed with ASPIE Aspergers Sydrome, high fuctioning. She struggles with social interactions with feelings, recognizing something is wrong and how do I correct it. Frustration, emotional control, not to be so much in control when playing the wii, etc. Knowing how to ask, when to interrupt, how to use our voice when speaking, how to seat at the table (stool) works best with her skirt, she does not sit on her skirt (very important not comfortable), or sits on her knee with legs under her bottom) choice are a blessing.
Booster seat ( I got a wide half booster seat) from the fire department. Or try memory foam under her car seat or under and behind her back with memory foam, softer. Or try sherpa soft material to cover the seat with. Also, going out and about remember when snacking (crunchy ) food alerts her mind, (chewy or sucking ) calms the body.
Sometimes before we sit long time or in the car try jumping, bouncing, swinging prepares her sensory body for that activity. Writing: playdoh, sand writing, hand play gets her hands, arms, wrist ready to write. I also wanted you to know when your little one sleeps (wearing clothing is not an issue for now) except panties. She does sleep better with just panties on. Just sleeps with a micro fleece blanket can not sleep under sheets. Just keep in mind when body changes and needs have a top on while sleeping introduce while needed or like for us parents we tend to be in the moment not the future for some things. We have used heating blanket sometimes, lately likes it cold. That reminds me when she was 6 or 7 she like to have her clothes in a zip bag put in the freezer over night ( we would take out at night and put back in the a.m) she would wear them cold for about a year like that. Another year it was warmth (dryer).
We would also since birth, she did not sleep through the night until she was 5. Not many people believe this, yet two days before the moon is full she wakes up between 12 mid night until 3 am and last everynight until two days after full moon. Melontia liquid sometimes works well. The Itchy Sweater is wonderfully written by a mom who has explained sensory as she sees it. I will take longer thoughts in my head for our own and other children who I may see half dress in the mid of winter. I seek for myself sometimes, yet I know what to do. Good night and hope blog later. Merry Christmas!
Do you know Soft Clothing? http://www.softclothing.net/resources/clothing-faq/ I’ve never used it, but I know people who swear by it. Watch for sales!
oh my goodness that must be so hard. I had no idea and ca’t imagine how difficult that must be for her on a daily basis – and for the rest of the family. Big (non prickly) hugs to you all
have you seen ‘teres kids’ ???
if not, you should check them out!
Thanks, Kristen, I’ll check them out!
I cannot thank you enough for posting. I have a knot in my throat as I write to you, and I’m finding it difficult to see the screen clearly as my tears keep rolling in. You have a tremendous gift, and that is being able to express in writing your feelings. After much research, going from Dr. to Dr. and their “weird looks”, hearing words of others (including an OT) “are you sure it isn’t just a phase, or perhaps she is just being ornery?”. After a long journey in looking for an answer to my daughters symptoms, I finally know she has SPD. As I sat there with the OT, my mind was in a fog. And in the midst of it all, there was a since of relief in the affirmation, and knowing now we can move-on, facing the challenges that comes with each day..armed with methods and information that will help her through the day. It’s a process as you say, taking each challenge as they come; growing along with my precious daughter….and loving her every minute of the day. Thank you for sharing with us your journey, your thoughts and feelings….I now know that we are not alone, and in some way this brings comfort and reassurance in knowing that things will be ok.
Thanks for your comments, Sandra. I am so glad that sharing our story has been helpful to others. All the best to you on your journey to help your daughter.
When I was little, I struggled with many of the same issues as your daughter (I still do, to some extent). When I was a baby, I would pull socks off my feet because they didn’t feel right. As I got older and more controlled in my movements, I pulled off my shoes whenever I got the chance. They felt so tight and I could feel all of the little seams inside of my shoes. My mother taught me to put on my own socks at a young age because only I could make them feel “just right.” I often had to take my shoes on and off several times before I could get my socks feeling right. I hated clothing that put any sort of pressure on my collar bones or hip bones. Even just a t-shirt seam going across my collar bones would bother me. Some days were worse then others. I still have this issue with t-shirts (at nearly 25 years old). Sometimes, I am fine all day until I sit in the car or relax on the couch. Then, I start to feel that seam and either have to hold the collar of my shirt out from my body or change into a lower cut shirt.
I also had other motor control issues. I didn’t learn to walk until I was 14 months old. I also struggled with learning to ride a bike w/o training wheels. I was 7 years old and the only reason I ended up finally doing it was because my 4 year old little sister learned a few days earlier. I couldn’t handle the comments my family and friends were making about me still using training wheels (know that I have only love for my parents, they didn’t know why I was having issues and thought I was just being a wimp….which may be partly true!).
I still stink at riding a bike and I haven’t ridden one in years but I asked my husband for a bike for my birthday later this month so I am going to try again to enjoy it
.
I just wanted to share my story because it does get better. I do live a normal life and am probably a better person because of my sensory difficulties. I am now a special education teacher and I feel like I can better understand my students sensory issues and can help them come up with solutions.
Your daughter sounds like an amazing little lady
. I wish her all the best!
Briana,
Thank you so much for sharing your story here. This makes so much sense to me. Much like you, my daughter is fine all morning, then she sits in the car or at the table and suddenly becomes aware of the seams. She isn’t riding a bike without training wheels and just turned 7, but that is fine. She has made so many strides in OT since I wrote this post, both with her sensory issues and her muscle tone and motor control. She is now zipping zippers, buckling her own seatbelt, snapping snaps and more. We know that riding the bike will come when she is ready. She is working so hard!
Thank you again for sharing your story. That is tremendously helpful and hopeful to me.
Therapressure brushing!!! Find a therapist to teach you and order the good brushes! Saved my sanity
You sound like me and my daughter three years ago. It gets better with OT and a counselor. Sports helps too.
What an amazing, thought provoking post. I had no idea that SPD had those issues attached. How lucky your daughter is to have a Mum who has bothered to find out about the condition and support her. I am sharing this post on the Sunday Parenting Party pinterest board and featuring it next week so that more families can find out about this. I wonder how many other kids have gone undiagnosed, its really not talked about enough so thank you for giving such a clear description of some of the aspects.
Thank you, my friend. Many kids are affected by SPD and many people don’t know about it. I was one of them for quite some time. I appreciate you sharing my post.