Dealing with a SPD Child...

by Melissa
(Boston,Mass)

I am a mom of 4 beautiful kids! I just recently found out my daughter has SPD, She is a 4 year old beautiful,smart,caring little girl.


When she was born, she cried all the time. The doctor thought it was colic, or digestive problems, so those issues were treated... But as a mom knowing your child something still didn't seem right she always wanted to be in her diaper,and always seemed to be throwing major temper tantrums.

I called the doctor and explained my feelings to him... he stated that she at the time is only 2 years old and it's hard to tell what a child's quirks are at that age...

By the time she was 3, she would only wear what she called "Tappy shoes", only a certain dress, NO socks,sneakers,jeans,long sleeve shirts,jackets. I would force pants on her because we live in New England with different temperatures all the time. As soon as we would get in the car she would go into a major temper tantrum and would throw everything off sitting in her underwear.

As time went on the spd got worse she will not wear a seatbelt in the car because it is not "tight enough". She will only wear flip flops & one dress with a very light jacket. She secludes herself in the house because she doesn't want to wear pants,sneakers,etc...

She will be turning 5 in march and with the way she is there is no way I can send her to school like this... We are now approaching winter too & I dread it because I know there will be no sneakers,pants, etc. She will only wear certain underwear if they are not the skunk,barbie ones , she throws herself on the floor in a rage... pulling them off after long stares and judgment on my parenting.

I went to my daughters doctor again & said please as a mom... something isn't right. Still clueless to what SPD was, he got in touch with a specialist that deals with SPD in children... I did my own research & found this site... and cried in pure joy that I did not feel so alone...

She doesn't have all the symptoms of SPD. She is okay with sounds and food. The only issue we have with her... is clothes and major temper tantrums... it breaks my heart to see my daughter cry over clothes.

After reading some of the signs of SPD and what it feels like to them, I cried & cried to know that this is what my daughter feels everyday. Then the guilt sets in about all the times we were angry with her... thinking she was being a brat, or unreasonable.

My daughter has her first app. Nov.19,2009. I am so looking forward to getting started on my daughters SPD so she can live a normal life, and deal with having SPD. I am sure parents dealing with SPD children know exactly what I am talking about... People out in public would stare at me like why are you letting your daughter wear flip flops in 20 degree weather. Boy... if they only knew.

I am so thankful for this site to help us understand... what SPD is and sharing stories...

Good luck to all the moms & dads,and children dealing with SPD.

Sincerely,
Melissa

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Nov 21, 2016
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2 1/2 toddler baby girl
by: Kate

My granddaughter is a beautiful honey blond baby princess but she is suffering from terrible anxiety. It breaks my heart to see her go through such anxiety about wearing shoes or socks or coats or clothes. She cannot play with other children she cannot engage with the other kids we have been bringing her to day care and she isolates herself As an observer.

It's getting cold and she will not wear socks at this time or a coat to only wear certain clothing and hang agonizes over what it is on a daily basis she cannot deal with it if two people are speaking at the same time she has a tantrum she can only deal with one on one I do think some of hers is behavioral but I think there's more to it than that.

we are in the Philadelphia suburbs and I am looking for some kind of support , suggestions or recommendations since her parents are in denial and I have been struggling as a grandmother watching and living with this . I would appreciate all suggestions or or recommendations and perhaps I could share them with her parents.

Nov 18, 2016
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My granddaughter hygiene
by: Donna

I'm not sure about my 12 year old granddaughter she's deaf she would go in the bathroom and acting like she's taking a shower but she don't... she still has a odor when she comes out but she keeps putting on the dirty underwear with clean ones and sometimes wearing 5 at a time whether they are clean or dirty.

When she stinks instead of her taking a bath she would put on more clothes to cover up the smell. What can I do to understand what's going on with her?

Nov 07, 2016
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no clothes
by: Anonymous

I was so happy to see these posts. Just this morning my 6 yr old granddaughter put on a pair of new pants not tights but not skin tight, here we go o they are itchy no I'm not going to wear them and almost every tag is cut out of her clothes and also hates socks my god I have to walk on ice just to get her dressed for school.

Then theres the no pj wearing to bed it's to hot an only covers up with a soft single blanket. This has gotten worse with age. Thank you for all the post. I will be watching for more comments, and yes I'm pooped out from this but feel better shes not the only one !!!!

Oct 07, 2016
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Looking for help
by: Anonymous

My son will.be four in January. As a mom I have felt in my heart that something has just been off since he was a baby. With the age thing being hard to determine if it's a toddler thing or if something else is going on. The older he gets I am getting concerned. If things change he has a very hard time. Clothing and getting dressed are dreaded times for me. He like soft clothes and refuses to wear socks. Nothing with seems. He will have a melt down over the littlest of things. He is a sweet, smart boy. I am just starting to look for answers on how to help and better understand if I am dealing with something else going on. Any advice or thoughts would be appreciated.

Sep 25, 2016
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My 7 year old girl
by: Anonymous

Hi, I am so glad to have found this site. I too thought I am alone in this. I read some of your experiences and I am experiencing exactly the same.

She wears her uniform daily. But then after wearing it, the complaints and the whining starts. We are from the Phils. She would complain in our language and eventually cry. Takes real time for her to settle down. This takes place almost every morning.

She complains about her inner shirt, her panties and her socks, saying it's ouchy. If we ignore her, she screams so we have to give her attention as she takes the school bus in the morning.

I will continue reading through all your posts and see what help we can get. It has started to become really depressing and frustrating for all of us. Her grades are now bring affected as well.

We need help too..

Sep 01, 2016
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Autism / SPD
by: Evelyn Omolo

Helo guys, thank you so much for this forum we have here, now my question is, Is Autism SPD? I have a son who was diagnosed with autism at the age of 3years, and it has been a journey though we have tried to manage it so far. And i want to appreciate parents who live with these special kids coz it really takes one the kind of heart you have to bring up a child like ours.

Thanks alot and God Bless

Aug 22, 2016
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SPD
by: Anonymous

My daughter has just been diagnosed with dyslexia, dyspraxia, dyscalculia and SPD. I would love to talk to anyone else whose child is suffering with SPD as my daughter for years has struggled and it just gets worse. It started with her being fussy about what knickers she would wear, the shoes, trousers tops, skirts I can handle but the knickers have become a big issues. We are in the UK and no one here seems to recognise this.

She is 9 now and 3 years behind at school the issue is so bad now she has to wet her knickers before wearing them and will now only wear 3 pairs out of all the knickers she has. She gets so upset about it, it hurts and I just don't know how to help her. I need help or at least someone to talk to, someone who understands. Her school are terrible and shout at her all the time and they just make it worse.

May 18, 2016
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Advise Please
by: Anonymous in Michigan

My daughter is 5 1/2 and she has been increasingly picky about her clothing. It is to the point I can not find a shirt or pants that are comfortable for her to wear. I completely cleared out her closet and drawers of clothing to start over. I was tired of all the fighting over clothing. We spent 3 hours trying on and picking out a weeks worth of clothing. Some of the clothing we purchased had to be returned because she decided after getting them home that they were not comfortable. She wore the remaining for a couple months and now these too are itchy, hurt her, etc. They are warmer weather clothing so we need spring clothing.

She is only in the 10% percentile and is in size 4, doesn't like tags or even seams. I tried buying Cuddl Duds to wear under clothing and it worked for a while, but then I think she had a growth spurt. The tops are not working anymore so I am going to try a size larger, but the pants will be too large. She is down to wearing 1 bottom inside out. Her skin gets red and irritated. She has sensitive skin and therefore we use dye free, scent free detergent.

I tried putting Eucerin lotion on after a bath hoping maybe it would help her skin and she broke out and was itchy from it. The nurse at the doctor's office was not much help. She tried to tell me it was just a phase that her nephew went through the same thing but if I wanted to make an appointment I could and if it was that bad the doctor would send her to a psychiatrist. I see physical evidence of my child's discomfort. I do not understand how a psychiatrist can help that. I do not know where to turn!

May 14, 2016
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OCD? Pandas? SPD? Not Sure
by: Anonymous

I have an amazing 5 year old daughter that with her teachers and most people she behaves amazingly. She is very smart. Loves structure, exhibits quite a few OCD type behaviors, loves things that are planned or for everything to go smoothly. I am a single mom now. Her dad and I separated when she was approximately 2 years old and i read many things where I thought maybe she had PANDAS since she had experienced strep and major life changing events like moving to a new house by ourselves, end of school year, etc. seams on socks, tags on shirts, underwear, excessive wiping (was an issue - this has gotten better), clothes not "fitting right" makes her have meltdowns.

Today we were at a birthday party and the new bathing suit I bought her didn't "fit right". she scratched herself (she used to scratch me) and then started to have an anxiety attack because her sister had a life jacket and she didn't. I quit my last job because I thought maybe it was creating stress. I am exhausted, tired, i don't feel that I am much fun around my kids. Both me and my ex husband are dating new people and I don't know if this is bringing on new symptoms.

Is there a therapist in houston/sugarland area that anyone recommends.

May 12, 2016
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unable to wear anything around her waist
by: Anonymous

Hi I have a beautiful 13 year daughter who can not wear anything around her waist which has a lot of implications on activities she can take part in.For example she is unable to wear the lower seat belt across her waist. This has such an impact on school trips as the school struggle with insurance issues.Ive tried a pillow ,cuddly toy etc for her to hold but she wont do that either. This is really starting to impact on her school life. Perhaps if she had a title they would be considerate but you can see IT.So my daughter is missing out from no fault of her own. has anyone had similar issues. Any advice would really be appreciated.

May 11, 2016
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Seems normal
by: Anonymous

Seems like pretty typical behavior. I would caution labeling your child with a "disorder." Most research on child disorders are all funded by pharmaceutical companies. I have a particularly spirited 4 year old and have gone through a host of similar issues. Strong willed children can be relentless. A pattern has been set and it will take diligent parenting to change it. It's a "Disease Called Childhood."

May 11, 2016
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Spd struggles, please read
by: The same-ish

I have done so much therapy and some has worked awesome. Does you daughter like to be touched? If so, you might want to try Chinese medicine. For example acupressure. It doesn't hurt at all.


I don't like the feeling of two layers, I got used to bras but never underwear. I feel ashamed every day for it and some day I know I will get my period and will HAVE to wear underwear.




Sorry if it is Tmi.
I just have SPD too.

Apr 28, 2016
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!!!
by: Sunny

Also, I would recommend reading about and therapy by Dr. Renate Jost (As Chaves do Inconsciente) Keys to the Unconscious and Inconsciente Sem Fronteiras (Unconscious With No Borders) - www.fundasinum.com.br - I have seen unbelievable healings only through the correct psychology and knowledge of parent/child relationship.

Apr 14, 2016
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I thought I was alone but realize other kids go through this
by: Anonymous

Wow first let me say that all of you are strong amazing parents! I hear what you are going through and I feel my issues don't compare nearly to what you are going through! I had thought maybe it is a phase and she will grow out of it or that she is being stubborn but the more I deal with it the more I think there are others things going on I just don't understand!! I don't think my daughter has it as bad as some but I noticed for the last year/ year and a half that she has sensory issues!!!

She is a 5 1/2 year old that is in kindergarten as a early enrollment! She is sweet, loving and so smart but you would never know there was an issue with her when she is in school or out anywhere! Since last year getting dressed in the morning is terrible unless it is a weekend and we aren't rushing she is ok but if she needs to go to the bathroom or get dressed when she isn't ready to the meltdown begins!! Everything she puts on bothers her, she doesn't like how it feels, etc and her long beautiful hair!!That is another issue!!! She hates when it touches her back!! Plus hates the noise that a winter coat makes when rubbed! Blocks her ears! Some days are just so hard!! I feel helpless!

She also sleeps with these rubber letters used for kids with chewing issues! She uses them to rub her arms with. That is what she did with her pacifiers too when she used them! There are days I am tempted to send her on the bus in her underwear or pj's just out of pure exhaustion! Plus I work at her school when I get called in to sub as a paraprofessional which me driving her helps some being we don't have to leave as early.

Nov 30, 2015
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pants for boys with snaps/buttons issues
by: Anonymous

There was a post asking for help in January for an 8 yr old boy for pants without snaps, buttons, ect that were not like sweat pants. I buy my son jeans/pants from the Crazy 8 store. (If you do not have one in a mall/around you, they are online as well and you can order them/have them shipped to your home). These specific pants/jeans are pull on, are regular pants/jeans material, but around the waist they are sweatpants material with a drawstring. You can not tell at all/see the sweatpants waist part when he has a shirt on. He loves them! Unfortunately, they only go up to size 14 so, eventually he will grow out of them and I'll be looking for alternative solutions as he gets older/grows.

Jul 20, 2015
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frustrated for what my granddaughter is going through
by: Pat

I feel re-leaved hearing the stories from other parents. My little four year old granddaughter whom I raise has a major issue with wearing underwear or shorts or pants, she insists everything is to tight and if I buy her little clothes any bigger they will fall off. I noticed about one year ago that she started complaining about her underpants and would cry over them not feeling like they fit right. I bought just about every kind of underwear there is and she chooses only one pair that I must wash on a daily basis or she will cry. Now her issue is moving on to shorts, and pants. I believe this is the onset of SPD. I am grateful for the stories because now I know I can seek help for her. It is frustrating and breaks my heart to see her get so upset over a pair of underwear.

Jul 16, 2015
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To _ indinal
by: Anonymous

Hi ... I think your grandson is fine. He sounds just like a 2 year old boy. Only thing that would worry me is the fact he doesn't want to be around everyone.

Jul 15, 2015
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in denial
by: Anonymous

I have a 3 year old grandson. I started noticing signs about 1 year ago. So I did some research and came upon this site. Well my husband and I decided to tell my son and daughter in law. Well they are furious with me. They say that there is nothing wrong with their son. They say I am cray. Worst of all my daughter in law's family agrees with them. It has cause great pain and distance with us and our son.

They said the pediatrician told them that he will grow out of it.

these are the symptons I have noticed while I am around him , there might be more but I am not around him 24 7.

1. refuses to potty train and only wants to be in diapers

2. he stears like in a trans for a few seconds

3. he is agressive and throws tentraums

4. he distance and isolate himself from people when there is a group(sometimes)

5. covers his ears whenhe hears high pitch noise or vacum

6. he talks to himself like he is talking to someone especially at bed time.

7. he is thirsty alot

8. he will not respond when called by his name

9. he jumps all the time like Tigger

10. he watches tv over and over and over while jumping up and down

11. sometimes you cant understand him but other times you can.

12. he is very very intelligent ,knows his numbers,colors,letters,uses laptop,Ipad etc,

13. he is a picky eater. likes to eat the same thing most of the times

I told my son about this but he wont listen, he saids I am crazy . I do not know how to get thru him. I have tried everything . He wont get my grandson evaluated by a professional.

I hope some day soon he will .


Jun 23, 2015
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New onset of anxiety for 5 1/2 old granddaughter
by: Anonymous

Last year our granddaughter started to refuse wearing underwear because she said it 'followed her'. Now she has a panic attack when we put on her seat belt. She has none of the symptoms on any of the check lists for SPD. After driving for 30 minutes with her screaming and wiggling out of her seat belt, we were able to calm her down with verbal distraction. it is very frightening. She will not wear underwear.

Jan 17, 2015
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Public Meltdowns
by: Anonymous

My daughter has SPD also main issues are clothes and meltdowns. She does have texture issues too. My question is how do you deal with the meltdowns out in public? For example during a wrestling tournament. It was our clubs tournament and i was working at a table so I was unable to remove her from the building. Or out in public in general?

Jan 13, 2015
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Accomodations were the problem!
by: Anonymous

I feel so much for every single one of you because I have BEEN there and it is so hard every single day!

This summer my daughter bottomed out and ended up spending all of June and July in the house not wanting to wear any clothes AT ALL. We ended up having her admitted to a child and adolescent mental health facility where she stayed for a month! She was put on a mild dose of prozac, but it was actually the method of her psychiatrist and the change in the way she was dealt with that got her her life back.

We all accommodate right? Schools accommodate to the max and we as parents do absolutely everything we can to try and find clothes that will work, and we wash and re-wash the same things over and over again, but when they scream and "Can't" dress - we just throw our hands in the air and don't know what to do. Because we have had it so ingrained in us that they Can't because of their anxiety. And it IS anxiety that causes these clothing problems.

So what the psychiatrist taught us is that instead of giving in and letting our daughter have her way, we parent her the way we would parent any other child without these issues - we tell her the expectation, what the consequences will be for not meeting those expectations - and then we wait for her to step up.
It was very counter intuitive for us - and stinking hard. At first I was mad and I hated the doctors and the workers because I was convinced that they didn't understand her. How could they expect her to do what she just could not do? Didn't they know the clothes actually felt painful to her?

Well - they told her that we couldn't visit unless she dressed - and guess what? She dressed! And then they gave her time limits - and she met them. And when she finally came home from the hospital she could dress every day. On the days she said she "couldn't" we said "Fine, that is your choice, but you will spend the day on the bed without anything - no books, toys etc - absolutely nothing to do". And guess what? That alternative didn't work for her. Before I would let her watch t.v. or play video games in her robe - anything to help her feel better because of her delicate psyche - but not now - now there are consequences. And it worked. I wish I could have each of you sit with this psychiatrist and let him explain his method to you. He said accommodations are what led to her bottoming out and that we needed to expect her to do what was required of her. In fact - the recommendation is for no counseling in terms of anxiety because she will milk this for all it's worth to the point of saying, "I can't do this or that, don't you know I'm anxious..."

So maybe it's time for a whole new approach for you with your child. Maybe they don't SPD, maybe they are anxious and soothe themselves with fussing over clothing but need you to help them get over this.

All I know is that at one point in mid August I thought she was too far gone to ever come back to us, and suddenly we had our child back. She is in school full time (grade 6) and although it takes her a long time to dress -she does - every single day. Slowly but surely she is beginning to thrive!


Jan 13, 2015
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Need Help With Clothing Options for Eight Year Old Boy with ADHD and SPD
by: Amy

Our son has SPD and ADHD, and he has challenges getting ready in the morning. He often puts his underwear, shirts, and pants on backwards and his shoes on the wrong feet. The teacher and the students in the class have noticed that his pants keep falling down. He has been wearing pull-up pants like sweat pants and basketball pants because it is hard and uncomfortable for him to wear stiff pants with buttons, snaps, etc. Do any of you have any ideas for pants that will stay up but don't have a difficult closure to them? For example, I was trying to find some velcro closure pants, but I can't find anything. Your help is greatly appreciated as he is being teased at school. He has short legs, a small waist, but a husky upper body.

Dec 11, 2014
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fits!
by: Anonymous

My daughter is 5 years old .now in school.we have dealt with major fits over a year now.she has to wear uinforms to school .and has got used to it.but it's not without a fit every morning!.when she gets home she will change asap.and the fits begin all day over her clothes.bathtub is terrible!bc she has to throw a huge fit over what pjs.she is going to wear.she hits and scratches and.she becomes very violent.her teacher says she is very good in school and very shy and does well with others.we were shocked when she told us this.bc she is not this way at home.75 percent of her day consists of screaming over her clothes.

Nov 30, 2014
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So sad
by: Anonymous

Our six year old daughter has always been quirky. (never liked wearing jackets and never wears underwear) She started kindergarten this year and loved it, but after one week she started not wanting to get dressed each morning. We have tried everything like laying her clothes out the night before, talking with the school counselor, etc. She has one pair of white pants she'll wear over and over. It's a battle every morning and it's awful for her, our two other daughters, and my husband and I. She throws horrific tantrums and says the meanest things. We try to remain calm and help her through it, but she will yell that she wants to get dressed herself, then yells she wants help, then goes back and forth until we physically have to dress her. She will then cry that she doesn't know what is wrong with her and that she hates herself. It's so sad and my family is falling apart. I've gone to our doctor and I'm trying to get her into a specialist. We got her hair cut short so she won't have to comb it, bought soft t-shirts, pants, seamless socks, I need help and I'm not sure what to do.

Nov 21, 2014
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I hear you - Baffled
by: LJ

recently read Baffled comments and I understand your need to talk to someone else with the same struggles. I have recently put together a small support group for moms with children with aniexty, its been super helpful to talk to other moms. Sending hugs to you and your daughter. Wondering if we are in the same province?

Nov 21, 2014
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update
by: LJ

so my daughter at 11, was basically down to no clothes last spring; and was actually pulling her hair because of the feeling on the back of her neck. I have to say we hit rock bottom. With the rock bottom we broke down and decided to medicate. Her physicians prescribed her a very low dose of prozac and it helped. We as a family had the absolute best summer. Many day trips and camping. Not one melt down over clothes. A happy girl! An 11 year who met friends and felt normal. In the fall I kept her home and I'm home schooling her still. Although we havent had any clothing meltdowns she still wears only one pair of pants, one shirt. I buy her different colors of the same shirt but she only wears one. Now that she is in grade six the kids are picking on her and singling her out. Also some of her quirks can make school a bombfield. Most teachers don't understand her OCD/tactile problems about things and just feel she is being defiant and are pretty passive aggressive towards her.

And the cold weather has arrived. We have bogs boots which are fine without socks. Go Walk Sketches which are the best things since Crocs. She can have no socks in these and no one notices. But I must admit lately Since the cold weather is back I see more of the old OCD behaviors popping up every now and then.....and I worry.I dont want another spring like last spring!

Oct 28, 2014
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HELP
by: frustrated

MY DAUGHTER is 11 & refuses to wear jeans..she wears the same pair of leggings everyday . Me and her father work and so her grandparents get her up and take her to school..its a fight every morning but it still ends the same everyday..and she has this one favorite pair of underwear...uhhhggg..she has a a lot of expensive in style clothing but wont wear them even tho she is now being bullied for wearing the same shorts..im at my wits end help

Sep 26, 2014
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Teenager help
by: Anonymous

Our daughter has always strnuggled but as we have done all that we could and she has had ESE support throughout school, she has been able to play sports and go to a regular school BUT in high school she hit a wall. We are home schooling but at this point that means visual therapy, Occupational therapy and pychologist.

We met a girl yesterday that was 22 and never finish high school. At 17, we are doing all we can. The SPD seems to have caused anxiety, panic disorder and depression. Is it because she struggled so long and school is too hard now? or just overwhelmed in life?

Does anyone have experience with a teen that has keep up until 16-17 years old and then going to the store is a big deal?

Feeling so alone...friends and family only see a beautiful smart girl...no one understands...
Help please...

Sep 25, 2014
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Screaming 3 year old
by: Anonymous

Could it be possible my granddaughter has spd, she is the most adorable well behaved happy child apart from every morning when its time to get dressed she screams for around an hour putting the clothes on, saying they don't feel right & eventually ending up with the original items on after an exhausting screaming & crying episode.

Sep 23, 2014
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Have Hope!
by: Kalee

Don't give up moms! I am 43 year old mom of 5. My oldest is 26 and when she was 2-3 years old and living in michigan I would have to take her to church with no shoes or socks. People always staring. She would be naked and playing in the backyard around 4-5 years old. No one had a clue in the late 80's and people didn't have internet forums or Google or any help! I lived with guilt and frustration. I am an END, surely I can't be this bad of a mother....

I really beat myself up as I fed her hotdogs 3 times/day for 8 months straight. Our pediatrician looked at me as if I was the craziest mother and I quit telling him about her as I feared they would call social services!

Today I am proud to say my daughter is absolutely beautiful. She wars heels and jeans and dresses and SOCKS...even with the "lines" across the toes! She eats vegetables and tries new foods. She was ho me schooled from 1st grade through 6th grade. We loved her through it and stopped listening to other people's suggestions and listened to our child and our guts. Somewhere along the years one by one her quirks became less quirky and as other children were born and our attention shifted off our all-consuming worry over our oldest child to just juggling all the kids, she grew up! She still has some sensory Issues but not so many and not all at once.

Keep hoping and loving your child. No matter what people on these forums or other websites say, know that YOU are the one who knows your child best. Mother's intuition has been around way longer than Google. If your gut says it's not right, it probably isn't. Keep looking for answers. Dont give up on your baby! By God's grace we made it thru. You can too! Give your babies hugs and kisses (whenever they will let you touch them)! Godspeed.

Sep 19, 2014
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For Wendi
by: Anonymous

Wendi,
I hate to say this, but your child has many symptoms associated with asperger's syndrome or autism spectrum disorder. I would call the public school and ask them to come do an evaluation. They can provide in home services and information on what you may need. I am no physician and DO NOT want to diagnose your child, but IF your child does have one of these disorders, you want to start interventions ASAP!! There are studies that show that the earlier you start services, the better your child will fare when they're older. I hope this helps.

Aug 10, 2014
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Help
by: Wendi

My son is 2 1/2 & I have no idea how or where to start in treatment for my baby. He has not been evaluated or anything. These are a few of the things he struggles with.

Loud noises
Ocd type behavior
Horrible fits
Only I can do something for him
Not social
Won't wear clothes, if he does, they have to have a ball game theme on them
Screams throughout the night
Takes hrs to eat one meal
Afraid to leave home
Advanced in his vocabulary

Any advise would be greatly appreciated. Thank you so much for your time and for sharing this page. I don't know where else to turn.

Aug 04, 2014
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Similar issues as well.
by: Anonymous

I appreciate this write up as my Son is 9 about to turn 10. We evaluated everything as it relates to SPD and much of it he does not have. During the school year things were awesome. This summer however things have been aweful. He will only wear a few certain shirts, only one swimsuit, and only certain shorts. The biggest issue for us is shoes. What is strange for us however is that much of the other signs of SPD, he does not have. When I look at the checklist, he really only has one or two symptoms. Anyway, I am at my whits end with him, and have no idea how to deal with this for us both.

This has gotten so bad that he got a skin virus from wearing the same cloths at camp and had to be treated with steroids. I am going ot spend some time on this site doing some more reading.

Jul 23, 2014
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Response to LJ
by: Baffled

I was so sad to read LJ's comments as my 11 year old daughter is really struggling too. She has been 9 weeks at home now unable to dress most of the time. She has completely lost her normal life, which means we all as her family has too. It's summer and she sits inside in a bath robe without underwear. She won't wear that out and refuses to go out to a doctor's appointment. Therapists who have come in have not helped so we are now at the point where we are going to call the ambulance tomorrow and have her taken to emerg. Something has to be done for our daughter - she is getting worse by the day.

She as diagnosed in 2012 with OCD, no one has ever even said SPD - but I think it must be a combination.

We live in Canada too and want so much to be able to talk with another mom in person who gets this!

I am just so unbelievably sad and feeling so hopeless!


Jul 11, 2014
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Thank You
by: Anonymous

Thank you for all your comments. I know now that we are not alone in our suffering with our nine-year-old daughter. She has the clothing issues and recently I have seen her trying to get into one of her doll's diapers and that she has been looking up "9 year olds in diapers" on her iPad. She has been diagnosed with ADHD and is on medication for that and for anxiety. Her focus is better and her behaviour at school has improved greatly. However, at home, we get the anger, the meltdowns, the clothing issues, etc. We also live in Canada. Have to wonder if we are behind in these fields.

Mar 26, 2014
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my 11 year old girl wears basically nothing
by: LJ

We live in Canada, my daughter has been diagnosed with ADHD, medicated and soon OCD due to extreme anxiety over clothes. She really wears nothing now. She has huge explosive fits and has scratches all over herself. I home school her now, and our lives are greatly impacted. Winter is the worst time of year. Honestly I knew she had SPD when she was 3. Our GP wondered if I made-up the term Tactile defensiveness. I told him to google it.

We are on our third Psychologist. This last one has been the most helpful, giving us exposure therapy and a name for an OT. We have been in contact with the OT that has Willbarger Brushing training. (only one local who is newly trained, when had a private OT when she was 6 but didn't have the training),We started the brushing and only got 3 weeks in. My daughter had trouble with taking on and off the clothing every two hours, so we failed at implementing the whole 6 weeks. Now she seems to be worse. Barely gets PJ's on. most days nothing. I'm waiting till the summer until we can start again. Hopefully we can get through it and she can just wear shorts and a t-shirt until the 6 weeks are up. I worry that for years she has been in this state and I doubt at this point we can turn it around. Sad to think about the future. We don't go anywhere and can't have people over. I believe this is as bad as it can get. Frustrated because I knew, and we were proactive! not lazy parents at all.

I have been doing a sensory diet for years learned from research and books. All other sensitives are gone except the clothing and its worse. I'm wondering what I'm missing. I know the next step will be the medical doctors are going to suggest SSRI's which is what I've wanted to avoid through this whole thing and know we are there. Just sad.

Aug 28, 2013
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Kinda lost
by: Anonymous

My son was 5 in feb. We noticed he was not as mature as his sister who is 14 months behind him. He was in daycare and they noticed he seemed very immature for his age. Took him to a psychologist right after his 5th birthday. Said he is very immature for his age and borderline aspergers. Said since he is so smart to send him to kindgergarten. Well this turned into 3 days of fits from my son. He did't want to stay in line. The intercome system was too loud. He didn't want to play with other kids like normal, seems very anxious at school (just a few times a week at home or other places). He loved going to school, no promblems with clothes. It just seems certain noises. But he loves listening to the choir at church and monster truck shows! Just ???

Jan 10, 2013
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There is help
by: Cathy

My daughter suffered from clothing issues since preschool. No one knew what it was. After lots of fights and lots of guilt, we took her to an ot....3 months of intensive therapy every two hours brushing compressions, trampoline, weights along with gluten free dairy free. This falls 95 percent on a parent. Went to her school every two hours to do brushing and compressions. Insurance covers nothing, but will pay for Prozac! Misdiagnosed w OCD anxiety disorders etc. this therapy works. She is about 75 percent better. There is no real cure. But she is not as bad. She went from wearing no underwear, one pair of shorts two t shirts....to wearing skinny jeans soft pants pretty trendy tops, jewelry. She needs all cotton comfortable clothing. And also gets worse during winter when not moving as much. Lot of hard hard work for entire family...cost about $3000 out of pocket for ot once a week 3 months. Diet exercise omegam3 a lot of patience...gluten free dramatically changed much happier disposition. Well liked lots of friends teachers always liked her...most problems meltdowns at home trying just to get dressed. Ot ot ot good luck

Dec 26, 2012
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Switching it off at school
by: Anonymous

Hello All,
Dee, my wife and I can relate. Our son, now 8 has SPD and has had frequent meltdowns before and after school, but can hold it in at school. He has never had an incident at school or church, and all the parents, teachers, and sunday school leaders describe him as sweet, caring, quiet, a joy, etc. His meltdowns after school will occur on the way to the car, or in the car. He calls my wife idiot, says that he wishes he was dead, or just plain screams. When he meltsdown he is inconsolable and doesn't react to reason, threats, or encouragement. All we can do is hold him and squeeze him, and we can eventually feel him calm down. Then we do the exercises mentioned below. However, this isn't without the frustration, guilt, shame, and sometimes sadness others have reported on this site

We are teaching him to recognize when he is feeling agitated and to do exercises to help himself out. Push fives, crab walk, seal crawl, jump on a trampoline, wall push ups, etc. It has helped. His meltdowns don't happen everyday anymore. Gum or a tootsie roll as soon as he gets into the car also helps, (something about oral sensation,and chewing that helps the disconnect between the brain and senses).

Hang in there parents. All four of our kids has a sensory disorder of some sort. Our oldest has a very minimal SPD. With her it is the sight and smell of food. If it looks or smells funny, she will not be able to get past it, (true for me too), Our 11yo, just shared with us that pants have been bothering her since she can remember, but she was afraid to tell us. Our youngest son is a sensory avoider; food textures, touch, feel, and sounds of applause will make him cry. He has improved due to OT and it being caught at a young age. Our 8 yo, is better than he was. He used to complain about his pockets hurting him. Clothes and socks were a big issue. Now, not at all with the clothes and socks. He just has meltdowns and anger, but this has also improved. We are hopeful that this too will improve with work and encouragement.

Oct 16, 2012
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Switching off at school?!
by: Dee

My four year old daughter has nearly been diagnosed with SPD and I read these posts and think YES! That is us! But apart from a few close family and friends no one knows my daughter is like this as she has an amazing ability to switch it off at school. Her teachers described her as a quiet, sweet little girl and a just about choke when I hear it! At home she has violent outbursts, tantrums, and yes, the clothes issue! Seatbelts, bedtime...you get the picture because you understand! Does anyone else have the same issue with a split personality?!

Is it social anxiety enabling her to control herself or is she switching off her senses while she is out? And then the meltdowns begin as we are walking to the car! Deep breath! Someone tell me please if this is possible?! Still waiting for someone to actually take responsibility, listen to me and confirm the diagnosis. Hang in there everyone. Xxxx

Sep 21, 2012
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so it's SPD, now what?
by: Anonymous

I have a 9 year old girl with severe tactile defensiveness. Some days she can just not wear clothes at all. She goes to school maybe 50% of the time. We have a good relationship with the school but to be honest I'm completely overwhelmed at this point. The only diagnoses we can get in Canada is ADHD. and she is now medicated. Hasn't changed anything about her tactile problems though. She can focus better and does better at her reading but whats the point if she can't make it to school? Honestly, I can't imagine where this is all gong. Our lives have been consumed. I'm home, not working, and doing home schooling with her. I've been brushing her and see little change. Does anyone have anything else they can offer me? What is the long term? Is there a better medication than a ADHD med?

Jun 08, 2012
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SPD to light touch
by: Anonymous

I have a six year old girl that was just diagnosed with SPD to touch. Just a light scratch on her skin and she has a major meltdown. We had problems with seams on socks, underwear, hair brushing and baths...but she seems to be able to tolerate it now. Another big issue we had in the past was toys that talked and vibrated. We couldn't go to the store or anywhere without her being terrified of these types of toys. It has been so difficult the past 3 1/2 years not knowing what this was. We even saw a psychologist for a year on and off that couldn't figure out what she had. She thought it was just behavioral problems. Finally we saw another social worker and she pinpointed it right away. Now we are seeing an OT who has started her on the brushing therapy. I am hoping she will feel better very soon! She has been suffering and our whole family too. The anxiety she has controls the entire day. I am optimistic that she will improve.

May 20, 2012
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Spd
by: Anonymous

I have also experienced the trauma that SPd can provoke. My 27 year old girlfriend refuses to wear pants and it has now got to the stage that she cannot leave the house and has left herself completely isolated, resulting in a serious strain on our relationship and her friendships. Any advice would be greatly appreciated.

Apr 22, 2012
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advice
by: Anonymous

My eight yr old son has many of these behaviours listed esp the need to overstimulate and the extreme tantrums. I'm exhausted and desperate and feel alone. Happy to have found this site.

Any advice about what to do when he's overstimulating? I'll be looking for an OT. I've heard that in Canada we can't get a diagnosis.

Thanks
mm

Mar 28, 2012
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spd
by: Anonymous

Our daughter is about to turn five. Our daughter must have SPD. She has not worn knickers, trousers, leggings, shorts, swimwear or tight's (basically anything with a crutch) for as long as i can remember. Our daughter also refuses to wear a seatbelt and removes all of her clothes, shoes and socks when getting into the car. Our daughter recently had an obsession with the velcro on her shoes and was getting very angry and upset at school because they would not stay lined up right. I spent a week searching all the local village's for a pair of buckle school shoes in her size (Start Rite do two styles of buckle shoes if anyone is having the same problem). Following our first visit to our paediatric consultant on 25th May 2011 it was repoted that our daughter had Laungage Disorder and Social Communication Difficulties. Then again on 19th September Diagnosis: Langage Disorder, Social Communication Difficulties (Possible Autistic Spectrum Disorder) and sensory issues - only because I pushed.

We are currently 25th on the waiting list to see Clinical Psychology (this means at least a year). We have had a visit from a private O.T and plan to meet with her again. The transition from playschool to school is slow but we are getting there. I do have to keep the school on there toe's and have sent in much information and books. I'm astonished that the proffesionals do not communicate with each other so I have to constantly keep everyone informed. The day's are long and sometimes very hard but our daughter is an amazing little girl. Can anyone suggest anything to help our daughter to wear knickers and wear a seatbelt?

I'm happy for my daughter to wear what she wants at home if thats what she needs to do but I really would like her to wear knickers to school. have any parents found anything that helped them with the seat belt? it's my main priority. It's a relief to know i am not alone and I think of you all when driving my daughter to school wearing no clothes and take comfort. Thank you in advance x

Oct 19, 2011
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5 year old girl with SPD
by: Tara Sinnott

Hi,

I've logged into this web site in desperation and feel like I have taken my first proper breath in months to hear all the stories that are so similar to my own and my daughter's.

I am a mum of 4 lovely kids and my 2nd, Anna, who is 6 soon, was diagnosed with SPD last year.

Her one and only symptom of SPD she has is her clothes.. but anyone of you who have a child with SPD will know it's enough to upset you, your child and the rest of the family for the whole day.

Anna started trying to pull her clothes off before she could talk, I didn't think much of it til she started Montessori and she wouldn't wear a coat/socks/closed shoes etc; when we had to leave the house. It got so bad that I was lucky if I could put a tshirt and tracksuit top on and flip flops, which living in Ireland, isn't practical 11 months of the year.

The relief I felt when she was diagnosed last year was immense, but I must admit, every day is a constant struggle. Dressing takes up to an hour, as she strips off, shouts, screams drools and spits at me, cries and basically throws tantrums for all of the morning. I feel so bad for her, she is usually a beautiful, kind caring little girl, but this has just taken her over and consumes our lives. Once she goes to school, she "gets used" to the clothes (which is 1 of 2 tracksuits and 1 of 2 t shirts!) but the cycle starts over again the next morning, as bad as ever.

Swimming is nearly and impossibility, gymnastics, sports. etc; as she won't wear swim wear/runners. She also misses out on outings with the rest of the family at weekends as she chooses to stay in her pants rather than get dressed for the park.

The OT Anna saw recommended the brushing technique, but to be truly honest, this didn't help for long.

I would love to hear from any of you other suffering Mums with a child similar to Anna. I would appreciate any advice you could offer on getting Anna dressed as peacefully and easy for us both as possible as it is so upsetting for us both and for the rest of the household also.


Look forward to hearing from you,

Take care,
Tara

Jul 15, 2011
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Thats my child too!
by: Anonymous

My child is 4 years old and in the last month become someone totally different. There have always been things suggestive of a sensory problem like dislike of loud noises, underwear giving her "wedgies",shoes not feeling right.
In the last month, it has turned in to rage temper tantrums wearing any underwear or shorts. Every day 2-3 times a day the tantrums get worse and worse. I am in tears now thinking about it. She won't go to the bathroom until the last second because she will have to pull her pants up/down, then she wets in them a little and the process of changing clothes starts all over again. We see an OT in August....praying for some help!

Mar 18, 2011
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Just when I thought I was going crazy...
by: Anonymous

I'm in tears as I read these comments because now that I know my little girl has a disorder, I see that I had one as a child. This has definitely been a genetic thing in my family. Its like a big weight has lifted off of me. I can't wait to find an OT!!I was always afraid to get help because these kinds of issues get passed off as ADHD or bipolar disorder much too often. Its like a sixth sense led me to this site. Thank you God for the hope! Thanks to all of you for sharing and to the research on this condition.

Nov 09, 2010
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We have all been there
by: Belle

I can say that while reading your post I saw my children. I have three children that have been diagnosed with SPD, I can tell you that every SPD child is different. My daughter is a sensory avoider, when she was younger she could not stand certain textures on her hands and feet, and the clothes thing I get 100%. What has worked with me is the soft knit pants and allowing her to go shopping with me to pick out her clothes. If it were up to her she would wear a bathing suit year round, but as you said, it does get cold and well wearing a bathing suit shopping is just not acceptable, so we compromise, she wears the bathing suit on under her winter clothes, she is happy and so am I. This is the first year that my daughter will wear bluejeans, and only Miley Cyrus ones at that, prior to this year it was knit pants only and she prefers dresses and skirts. Once school starts I have to go into her room, and take all of her summer clothes out of her closet and dresser, box them up and hide them, other wise she would never wear anything else. Same thing with shoes (which is a never ending battle, thank goodness she now has a love of boots so we were able to overcome the flip flop issue)

Also the clothes issue could be the tags in the clothes, the softness etc, so check that out and flip flops get her some toe socks, she can then wear the flip flops or have the sensation of something between her toes.

My boys, my douglas is a sensory seeker and avoider, he avoids foods and seeks high impact. JM is a sensory avoider all around. Needs and thrives on pressure therapy as well as brushing therapy (which you may try with your daughter)

Welcome and Good Luck.

Nov 08, 2010
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Moved to tears.
by: Awinegard

I can't help but just cry everytime I read these passages and feel such a kinship and understanding with everyone's stories. My one year old has just recently been diagnosed with SPD. We will be starting OT tomorrow! She has major melt downs, pulling out her hair, slamming her head, etc. It breaks my heart that I can't do something! Then there are times that I feel that I am the crazy one, when family says there is nothing wrong with her. I always reply you are right there isn't anything 'wrong' with her, she has a sensory processing disorder. Thank you everyone for sharing! I need to know that we are not the only ones dealing with these issues. Thank you!

Aug 31, 2010
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Support
by: Anonymous

I have a 3 year old with SPD including all senses. We have done so well to create this amazing team for him at such an early age and yet it is EXHAUSTING!!! Support for parents is absolutely necessary. Some days nothing gets done except bare basics because of meeting the demands of my son's needs. We have a back pack that carries a variety of sensory tools for him and it goes everywhere. In each vehicle we have a selection of tools as well. Staying 10 steps ahead of him and recognizing what direction he is headed in in order to re-direct him in different circumstances is ongoing within our family of 5. We are always tag-teaming so someone else can get something done.

Some tools include bubbles, a Thomas the train bubble blower combination whistle, a pull tube (party store), straws, cup with soft cover to chew and suck on, raisins, dried cranberries, exercise band, whistles, train whistle, a timer with a bell, a watch with a dinosaur or car on it, a favorite piece of fabric, a shaker, chewy toys. In the car we have a set of fisher price head phones for noise blocking, a portable dvd player for short episodes of favorite shows.

Just to know that I am not the only one who is dealing with this is such a help. I hope you find some of the tools listed in his sensory tool bag helpful too.


Jun 25, 2010
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help for children with SPD
by: Anonymous

Hello Archie hello Melissa. Your stories are real! It is my reality. Courage for all of us with children with SPD. We must educate those who do not understand our children and their suffering, and we must help our children in every possible way.

Jun 24, 2010
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Living it and Loving it..
by: JC

Our son has SPD, and he is just over two years old. He is sensory seeking, undersensitive to pain, oversensitive to foods and temperatures. Every day is an exercise in extremity..crashing, throwing, meltdowns, jumping, rolling,... Top all that off with an Expressive Language Disorder/Delay (he cannot speak). We decided (already) to homeschool, because his needs are so great for stimulation, and schools do not, can not, and often will not meet all the needs for SPD kids. Besides, kids with SPD do not have ANY impulse control - making contact with schools unaddressed problems of drug/alcohol use, weapons, and gangs more than scary for us.

We are building a therapy room for our son to cater to his sensory needs on demand, where we can work with him to increase some tolerances and help him learn to calm down when overstimulated. We are seeking SPD parent groups to join, and give speech therapy to our son regularly. Baby sign language has unlocked our little guys ability to communicate with us..and I highly recommend it to any parent of a child with SPD. It clearly helps bridging the communication gap, and eases much frustration in our little guy.

Stay strong, love each other, and above all, take time for yourselves as individuals AND time as a couple. Distance yourselves from those who judge or criticize. Learn to laugh at your unique and impulsive little one, and enjoy the ride.

Jan 15, 2010
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help with SPD
by: Anonymous

I have read your story and can understand where you coming from, we have taking custody of a child when he was a yr old. He banged his head threw fits, and was always hurting himself, we put him in head start this year and found out that he has SPD, the headstart knew right away what was wrong I felt so bad because I thought he was just doing these things and misbehaving out of anger and we took away toys he threw and even done time out nothing seemed to work, certain noises he would stand and and scream at the top of his lungs, he only will wear certain underwear, theres days he just cries though out the day for know reason, and then day he clings to us. If there is any advice that any one can help us with please feel free to do so. thank you

Jan 08, 2009
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Thank you
by: Anonymous

Thank you, just thank you. I am in tears, that is my child to a tee. Thank you.

Dec 04, 2008
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You are on the right track!
by: M. Harris

I hope that things have become more clearer for you now. I have an eight yr old little boy with SPD, his preschool teacher read an article about SPD and felt comfortable enough to point out that this looked like our son.

After evaluations, etc he was diagnosed and we began understanding him. He is a terrific kid that goes to O.T. and is always progressing. He is very, very intelligent about the things that he loves and someday hopes to be in a college marching band There is hope!

Be prepared to fight for your little girl, you are her BEST advocate. Good Luck!

Monica

Dec 03, 2008
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Thank God I'm not alone!
by: Sheryl

Reading your posts has brought me so much comfort. My daughter has always been horrible when overstimulated--meltdowns that lasted an hour with her kicking and spitting, screaming, and completely out of control.

She is now in kindergarten and she seemed OK for the first few weeks, but then they switched teachers on her and now her symptoms are all back. She complains about her "bumpy" underwear and tries to take it off in school, she refuses completely to wear socks or snow pants (we live in Wisconsin!), she has been pulling her hair out and biting her nails, sleeping badly and having meltdowns a couple of times a week.

The teacher and principal and the whole staff of the school are being unbelievable supportive, but it's so stressful! We are seeing a child psychologist who thinks it might be ADHD, but we're going to have her tested for SPD if it's not ADHD or she might have both.

I'm so stressed out I can hardly sleep or eat and every time the phone rings, I jump a foot in the air for fear that she's gone into a meltdown again. If I hadn't found this site, I think I might have dissolved into tears on a daily basis.

With three kids & a full-time job, managing her symptoms and being an advocate for her in school has been very hard. We are doing everything we can for her because we love her so much and she's the most wonderful child when she's not all freaked out about her sensory issues, but I just wish I could wave a magic wand and make it all turn normal.

Nov 30, 2008
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You are on the right road!
by: Anonymous

Everything is going to be OK! My son is 6 and we've been there done that!!! Believe it or not, he has improved markedly once he started going to kindergarten! The changes in the last year have been factors better! We were afraid to "unleash" him on his unsuspecting teacher, but she's a tough cookie, and she's handling him great, with some assistance from our school's OT. I was even contemplating home schooling because I thought, public school will be a disaster!!

I'll never forget how his teacher had never heard of SID before, and we were like, "here we go!!!" But it's amazing how things work out. I think having my son in an environment all day long where he can see how other kids act has been HUGELY good for him. His school work is great. He's had some behavior issues - he doesn't understand other people's space, etc., but his "red marks" at school are consistent -- we are working on those.

I hear you about the seasonal clothing changes! Yikes! When its time to dress in pants and long sleeve shirts watch out! He still wears his crocks to school with no socks, and its like 40 degrees out! You really end up picking your battles.

Have compassion for your child and YOURSELF! Don't be too hard on yourself - I think of it as we're navigating a cave complex with one candle - just do the best you can, no matter how quirky the two of you have to become, ignore other parents that have all of this advice because their children are "perfect" - ugh I hate that! You are running your own race! Love and compassion is what wins it!

Nov 06, 2008
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SPD
by: Anonymous

Good luck to you as well!

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