Teenager

I have a 16 year old with sensory integration disorder.

He was treated at a child but frankly, for whatever reason, his progress was limited and he was dismissed by the OT. I was told that they couldn't do anything else for him and since his issues didn't seem intolerable I moved on. I was told that he would grow out of it.

He would eat better when his body started growing and he was hungrier, he would shower and enjoy touch when he was a teenager and liked girls. My son is 16 and doesn't eat any better, tolerate life any better, enjoy being touched by anyone, and seems to be on a general decline towards depression.

I have him seeing a therapist and we are working on getting him to take the prescribed medication. Do you have any recommendations how a can help a 16 year old with sensory integration disorder?

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Dec 31, 2019
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SPD Teen
by: Heather

My 16 year old daughter has SPD. Wish we could find a other teens that she can relate to. Nothing comes up on instagram that seems to be active. Anybody know of anything?

Oct 12, 2019
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High School, the most difficult season
by: Susan B

I agree, high school is so difficult. My daughter struggled in terms of daily sensory overload, not being able to sleep even a few hours without a sleep med, fight/flight system not shutting down and leaving her body in a huge knot, etc. She was so stressed, a normal social life was out of the question.
College has opened up a new life for her. It has been the fresh start she needed, in an environment of her choosing, studying what interests her in her area of giftedness. Her doctor was shocked we were sending her to college 4+ hrs away, but the program was the fit she and I thought was best. Did it feel risky? Yes, but she met the challenges, has friends, and is thriving in her studies. She is even studying overseas this semester! She grew into recognizing her individual needs, and is owning far more responsibility in setting her own parameters and prioritizing getting her needs met.

The SPD journey brings us all to the end of ourselves. Personally, I’ve prayed countless heartfelt prayers over the last 8 yrs since she was diagnosed. God knew the way when I didn’t. I believe certain meds (for a season), counseling with professionals familiar with SPD, and holistic supplements, exercise, and improved nutrition have all contributed to her now living a full and satisfying life.

Please keep hoping, trusting and searching. Your wholehearted love and support matter, even when it feels like you’re hitting brick walls on every side. There are answers for your son.

Oct 09, 2019
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Teenager
by: Anonymous

Hang in there! Puberty can be one of the hardest phases for SPD kids! I am speaking from experience. Our trails seem similar. My son, struggled with all that you mentioned.

My advice is to see a Psychiatrist for possibly looking for symptoms of Depression. My son needed an SSRI to help him. He is 17 and still on it. He started it when he was about 10. These times can be trying, but I wanted to make it easier for him. He is a senior in high school and can't wait for college. Hormones, middle school, and puberty, are difficult in general! Add SPD to the mix, and I would seriously recommend a therapist too. It is great to have someone for them to talk to, can't get enough support during this time. Also, 504 now? Off the IEP? Transition can be difficult.

Best of luck, and I am glad you reached out here for support!

Oct 08, 2019
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I’m at a loss
by: Sandiev

My son is about to turn 13, he was diagnosed with SPD at 5. I’ve had him in special education in the beginning but for the last 3 years he’s been in regular classes. My issue is he has no want or drive to do anything. We tried team sports which did not work, tried something a little more individual like cross Country, & golf. He hates it and cries while at meets etc. He doesn’t like music, and not even into video games that much. Does terrible in school unless I push it. I’ll sit and help with the assignments and then he doesn’t turn them in! He won’t eat anything other then a few things. Recently just said he doesn’t like peanut butter anymore. Now I’m down to 4 things. He has no friends , and It hurts my heart .... I just don’t know what to do! I. Ugggh!

Jan 02, 2019
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You’re not alone, keep persisting and believing there are answers
by: Susan B

Dear sad mom,

Please know you’re not alone. I relate to your feeling responsible. But some bright kids with SPD slip through the cracks, and aren’t diagnosed until adolescence - like my daughter, who is now 21.

She is home from college for break and we were just talking today about the long road we’ve been down together due to her SPD. We believe some of the holistic approaches we pursued helped her. She is smart about lifestyle choices that work for her. She can’t sleep without Ambien every night. But she is living a pretty normal life now.

Have you read any books yet? Do you know about the Facebook group for adults with SPD? I joined it when my daughter was in high school, because I couldn’t find any other groups or resources for teens with SPD.

My Masters is in counseling, similar to your situation. When you’re a helper, and you feel helpless - esp with your own child, it’s so hard. Please know you’re not alone in this. Let me know if you need resources. I’ll share.

Jan 02, 2019
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response for feeling helpless
by: Anonymous

Dear Sadmom,

Don't feel alone. I have a 16.5 year old son with SPD, and it is very important to stay close during puberty, and the teenage years. Depression is very common for SPD kids. Make sure he is on the right medication and sees the most helpful therapist that is helping him. Diet stuff is totally normal, as well as dropping out of sports when the time has come.

Keep encouraging social and sports. Embrace who is he, and you can't change him, but give him the tools he needs to love himself for who he is and celebrate that!

You are not alone. Read books, reach out like you did, and find a support group if you can, even under Autism groups if there is one......

hang in there, and stay positive. Get yourself a therapist too! You deserve one! Stay positive and here is to a new year of change. Mtn. MOM

Jan 02, 2019
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feeling helpless
by: sadmom

My son is 14 years old and i have always known there was something amiss. He grew up holding his ears when flushing the toilet or when i was vacuuming.

At the age of 18 mos, he started to slowly eliminate almost all foods out of his diet. He was also diagnosed with GAD in 6th grade, with a lot of social and performance anxiety.

He is currently on 40mg of fluoxitine and sees a therapist 1x week. He has quit playing hockey b/c of issues around not being good enough(he was always the best player as a kid) and has struggled with baseball also. He has no stamina and eats only Tyson chicken nuggets (sometimes-if they look different he wont eat them), skippy peanut butter, wonder bread and a few other items.

That being said, it can change on a dime. I am feeling like I have failed as a mom-and i'm a social worker and therapist-i am feeling very much alone

Feb 03, 2018
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Puberty spd response
by: Anonymous

Hi Heidi,...My spd son is now 15 1/2. I believe puberty and hormones are definately at play, and the teen years bc of puberty and hormones are definately more challenging for spd kids. Just my own experience talking.

My son grew a tin, and his regular ssri or anxiety and depression (which i believe can be another outcrop spoke from spd bc of general anxiety all the time) had to be upped in dosage, and then we switched to a different brand name all together in same class bc my son felt it just wasnt working anymore.

I didnt go back to OT, but we did start seeing a new psychiatrist, (we were at childrens hospital since diagnosis for ssri) and we switched to a doc in our small town, and we got a new therapist to have on reserve, as the teen years are challenging enough. Add spd in there, and you take it up a notch.

It has been hard getting good info for teens bc so much with spd now is down on early intervention (which we did as well my son was diagnoosed in preschool) but growing up when you grt into middle school, high school and beyond is definitely an area we need more info on!

Take care, amd lets all keep posting here for teens!! (Sorry written from my phone)

Feb 02, 2018
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Seeking OT for child in High School
by: Anonymous

Heidi, I’m so glad you found this site and posted. I definitely sought out treatments for my daughter in high school. A friend of mine who had three boys with various special-needs told me about a technique called the Masgutova method available through some OT’s. I found someone trained in my area. It is effective body work used for a variety of issues. Check out these websites to see if it may be an option for your son.

Masgutovamethod.com

Brainchildinstitute.com/sensory-processing

I also took my daughter to receive holistic alternative medical treatment to address imbalances in her body. While I cannot prove those supplements helped her, my daughter and I both believe that they did. Over the years, we had seen so many doctors and tried so many different medications , we were exhausted and discouraged. We also finally found a psychiatrist with training in neurology who now oversees my daughter’s treatment for sleep issues.

She’s functioning better than she ever dreamed she would now. We are so grateful, and we firmly believe in continuing the search through the seasons of life to find solutions.

Stay with it! And if you go on Facebook, I am going to start a Page for Parents of Teens with SPD soon. It’s hard to find people who understand, but doing this together is far better than going it alone!

Feb 02, 2018
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by: Anonymous

The Out-of-Sync Child Grows Up: Coping with Sensory Processing Disorder in the Adolescent and Young Adult Years

Feb 02, 2018
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So glad to see I am not the only one struggling!
by: Heidi

I JUST posted on FB yesterday about my complete frustration about lack of information and support for teens with SPD. He has SPD, auditory and visual processing disorders, as well.

When my SPD kid was diagnosed as a little boy, he got speech, OT, and tons of support. I, too, was told as he matured neurologically, it would get better. And, for a minute, it really seemed to.

Now that he's 13, however, I am seeing a DEFINITE uptick in behaviors (He's an avoider) and I am wondering if its the onset of puberty and influx of hormones or....? Honestly, its like he's 4 years old again.

Note: He's an elite level soccer player and exceptionally athletic. He's currently injured and in an air cast so I know some of what's going on is his inability to exercise as that's generally his main outlet for his anxiety.

Has anyone sought out OT again hitting the teen years?

Dec 26, 2017
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Thanks for the encouraging story, Rowing Mom!
by: susan b

Thank you for the encouraging story, Rowing mom!

The SPD road as a kid or as a mom is full of challenges that other people have a difficult time recognizing. Each time a mom or kid comments on this site, I am glad that there is a way for us to connect.

The fact that your daughter has found rowing just about moves me to tears. My daughter is turning 20 in a few days. She is doing well in college, and is about to begin her first semester of paid full-time co-op work in the adult world! She is managing a full social life, and has made great strides in recognizing her own needs and taking responsibility for meeting them..

She has started posting make up tutorials on YouTube. If you want a good laugh and want to learn some great tips, watch her short video on how to cry and keep your make up on. You would never know this was a girl who wanted to take her lunch to a bathroom stall in high school because of being utterly overwhelmed from a sensory perspective each day.

College is easier in many ways. Our high school has 4000 kids, and simply getting to classes was overwhelming for her each day. Now she can take breaks, avoid loud, crowded places in excess, and is protecting the down time she needs to feel balanced and function well.

wishing you all the best as your daughter continues finding what she needs to live a full life and meet the challenges of SPD!

(The YouTube is Amy.m.borgs.)

Dec 19, 2017
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Rowing might help?
by: Anonymous

I can completely relate to so many of these comments. My daughter is 16 and was diagnosed at 4.

I will say the ONE thing that has helped her turn the corner is rowing. I think it has to do with the push pull of the erg and the oars in the water. The peace that she finds just being out on the river at dusk or daybreak with her crew mates. It just calms her and I definitely notice a difference when she's not rowing.

Recently she had a back injury and it was like someone flipped a switch. I couldn't touch her, talk to her or even really be around her. She was miserable. So that's our new therapy. We bought a Concept 2 erg, put it in the basement and on days when she isn't rowing she'll just go down there, spend an hour pushing and pulling against a resistance and all is right again. She's now even being recruited by colleges!

While I wouldn't call her teammates her best friends, they seem to love her and accept her for who she is and she's happy. Except when learning to drive. That's a whole other topic!

Nov 16, 2017
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Anxiety not Truancy
by: Debbie

My son has diagnosis of ADD wth auditory processing disorder, depression and now at 16 diagnosed with Asperger's... AKA on the autism spectrum. He's smart but what a struggle to get him to go to school. If it weren't for marching band I don't think he would have made it this far.

He turns 17 in January and has no desire to get his license even though we have a car for him. There are days I just can't get him to school. He says he doesn't feel well but I think it's anxiety. He also has a kidney disease.

The more school he misses the further behind he gets because he can never get all the homework done. As it is his grades do not reflect his intelligence. He would never skip school or break rules at school. He is not truant he just doesn't want to go some days.

I just joined a parent support group, for kids on the Spectrum. Most of their kids were diagnosed in grade school and are now in college but still living at home still not driving. I don't think public schools are really cut out for these kids to offer them anything. they should at least be allowed to have a few more missed days of school.

I have to fight for everything to be enforced that is already on his IEP. I would love to know if anyone starts a Facebook page. Although my son probably would not join a Facebook page. Nice to not feel alone!

I will continue to look for support for him.

Sep 26, 2017
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It's a desert out there for older kids and teens with SPD
by: Susan

Hi, I am glad you are reaching out. I have found nothing out there for older kids and teens with SPD. I joined a facebook group that has mainly adults on it, with a few teens. Since I found it to be a mix of negativity with the more positive, encouraging comments and supportive connections, my daughter chose not to join it. She survived high school and is now away at college. :)

My Masters is in counseling too. I'm now very busy with work now that my nest is empty, but I'd love to chat if you'd like about your idea of starting a Facebook Group. My daughter, who is now 19, and in graphic design school, may be willing to help you as well.

The need is there. If you have the time to start something, I'd love to help spread the word!

Sep 25, 2017
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Pre teen and Teen support
by: MIchelle

Hello,

My daughter is 10 years old in 5th grade. There is little to no support for older kids with SPD and I have not found any support arenas for kids to talk to each other and feel heard and understood. I'm a mental health therapist and mom of 2 kiddos who struggle with sensory issues.

Is there any monitored pre-teen or teen SPD groups out there? Any parents interested in starting one?

If not, I'm going to start a monitored Facebook group in hopes that our kids and talk to each other and be a support.

Thanks, Michelle

Sep 25, 2017
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Spd pre teen daughter
by: Michelle

Hi, my daughter is 10 years and in pre puberty. She was diagnosed at age 4 with spd.

About 7 months ago pre puberty started for her and everything went downhill. She's always had her challenges with SPD but it had been tolerable and manageable for her.

These last 7 months she's wanted to end her life she's extremely anxious, obsessive about certain things, she's unable to deal with any sort of disappointment or change. She's lost interest in everything she used to love to do and just wants to sit in front of her computer all day long because it's the only thing that distracts are enough to not feel awful.

She will now only wear 4 dresses, one pair of underwear and one pair of shoes. It's getting to the point where she doesn't want to go to school at all. Every night she falls apart and her body attacks her, she screams for it to stop. Her anxieties been so extreme we finally decided to put her on some medication which I really did not want to do. We've tried everything from biofeedback, OT, therapy, ILS listening program... nothing is helping.

Tonight she wanted to run out of the house and try to get hit by a car. She's only 10 years old. It is so painful to watch her I didn't know I can do nothing for her but hold her. I really wish she had a group of kids her age so she can understand she's not alone because she feel so alone all the time.

Does anybody know of any support groups for preteens? Or any monitored online ones? Has anybody found any treatment that works? We live in the bay area California.

Aug 19, 2017
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Illegible handwriting + SPD
by: Anonymous

My daughter was diagnosed with

DYSLEXIA - reversals, difficulty with phonemes,
Memory difficulty, visual disturbances
And more
DYSGRAPHIA - pain when writing, poor writing,
Holds pencil weird etc.
ANXIETY - largerly because of the struggles in her
Brain that we couldn't understand
Depression

Self Harm

And

SPD.

We got lucky that we caught it before she took
Her own life. She was quiet. Never rocked the
Boat for anything.

Now we know how vital it is to
Keep our kids talking. Keep them more connected
With humans than with electronics or internet.
And limit their privacy and alone time and also
Teach them how to decompress safely.

Still learning how to manage being in public etc.

Mar 30, 2017
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Spd teen online groups?
by: Lisa

Are there any resources for teenagers with Spd to be able to talk online with other teens with spd? I think that would be a great resource for spd teens!? Please let me know if anyone knows of any!

Thank you!

Jan 25, 2017
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Teenager with SPD
by: Anonymous

I'm 17 with SPD and it feels nice knowing there are other teenagers with it. It's often portrayed as something only small children have and it's difficult to find other people I can relate to. For me personally, something about SPD makes me feel alienated from others.

Some "normal" situations are very stressful to people with SPD that another person may have no problem with. Reminding someone that they are not less because they have these extra difficulties is important. I would enjoy being reminded of this because SPD challenges me daily and I am reminded of being different daily every time a situation comes up.

Oct 13, 2016
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Can SPD cause suicide?
by: Anonymous

Our precious 16 year old grandson took his life on October 3rd. He was a big, strapping, good looking boy with the whole world at his feet. We have no idea WHY. No drugs, no alcohol...did not seem depressed but just an average teen with hormones raging.

When he was in the 7th grade his mom and I were trying to read something he wrote and it was almost illegible! I had noticed he held his pencil at an odd angle so I tried to get him to hold it properly. He said it hurt his hand to hold it that way. I went on line to see if there might be something I could do to help him and happened upon this Sensory disorder. There were no OT's at his school and we had no idea how to address this problem.

After reading this I realized that he had an aversion to certain materials (jeans) and could not stand to hear graphite on paper.
Once he entered high school the inability to write properly and quickly was causing him problems in some of his classes. We contacted the OT at the high school and were going to get him help but he wouldn't dare see her because he said people would think he was mentally challenged (not the word he used).

Looking back, I see that he had more symptoms, such as not sleeping at night, not socializing well (he had many friends, he just didn't say a lot in a social setting) and, although he rarely got angry, when he did he erupted!

On the day this horror occurred he was downstairs talking to me normally. He was going to start to a night school because in his high school he had fallen behind in the subjects that required a lot of note taking. A friend of his was going to this night school and he was going to ride with him. He seemed fine with the situation.

Two hours after he talked to me he took his life by gunfire while in an upstairs bedroom. We are devastated and our lives will never be the same. For some reason I thought of this sensory issue and now I wonder if that was not part of his problem. Was he so worried and upset about this change he couldn't handle it? Did he feel so deeply that he thought he just couldn't go into another situation?

We will never know but if your child has this SPD please find out if there is anything you can do. This horror will never go away but maybe I can alert others to be very watchful.

Oct 10, 2016
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My teen too
by: Anonymous

Well. I have just found this and it's illuminating. My boy was diagnosed w/SPD and ADHD at age 4. He received PT as a baby, again PT and speech from 3 - 4, OT from 5 - 9 years, speech 7 - 13 years, and PT 7 - 10 years of age. Also vision therapy for a couple of years in there...

At age 12 we began meds for ADHD, which he has found extremely helpful. I thought we'd dealt with the worst of it, but now that he is 16, he is struggling so much. I initially thought it was the emotional rollercoaster of being a teen, but I think it's more than that.

He has a few great friends, and knows that's about all he wants, but he struggles to feel socially adept with people he doesn't know well. He feels he misses the nuances and he cannot think what to say back. He is paralyzed by anxiety, and sits at home with his homework and just cannot get it down (he does distract himself and daydreams more than usual).

He gets upset very easily and has expressed that any change - for example, if I change my mind about a task I'd like him to do - is unnerving. He has memory and organizational issues, but actively resists any strategies that would help him be efficient and more organized.

He's extremely smart and wants to go to a very competitive college but I can't see him surviving there, much less thriving. Any suggestions or resources would be so helpful. I think we need to lower the anxiety first before dealing with his weak areas like organization and social skills - I have him seeing a counselor but it's pretty slow going.

It only occurred to me last night to search around online because some of the things he said led me to think his SPD is the root of his anxiety and maybe we need to work on that first. I'd love to hear from other parents/teens about how you have worked through this. Thanks!

May 19, 2016
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30 years of dealing with SPD
by: Anonymous

I have two children with this disorder. I did not have them formally diagnosed but they had every symptom in the book. I did my own therapy. 30 years ago there wasn't much therapy or diagnosis available. I think the OT therapy recommended is the best thing. I will tell you my own story.

We enrolled our girls in DANCE. They are 12 years apart so the climate changed in between the two of them. However with my first I only recognized her issues when she was around 6. I got her involved in Dance for a few years and gymnastics, then she wanted to do music. These activities really helped the mind-body connection.

The 2nd one I got her in dance at 5 and it was an absolute life-saver. If/when she was having episodes She would go to dance and feel absolutely fabulous afterward.

There's a Physical Therapist that actually did a thesis on dance therapy for SPD. I'm sure there are other physical activities like sports that accomplish the same thing. If your child has any inclination for a sport, or music or hobby get them into that immediately. Everyone needs an outlet for their frustration and these kids need it more than anyone else, especially a physical outlet. And anything that also helps the brain/body connection is a WINNER.

My younger daughter is now 18 and doing great. She's a fabulous dancer and goes to many competitions where she wins trophies. Everyone loves her although we still have some panic attacks at home. The older one is married with a child. They have both learned to deal with their own issues and plan ahead of time and manage their disorder and panic attacks.

Also read the books, "The Out-of-Sync Child", as well as "The Difficult Child" which was written about this disorder before it was called SPD. "The Difficult Child" has very helpful practical things you can do at home to help with the panic attacks that result. These kids are extremely intelligent and can be extremely successful. They are more in tune with themselves than others...If you can get past the panic attacks.

Jan 23, 2016
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Suggestions for a 16 yr old
by: Mom of 18 yr old with SPD

First, your son is blessed to have you on his team. The stories I've heard of teens with parents who don't understand SPD are hard. There is a real need for more information and support for them. Without taking you through our whole saga, here is what my 18 yr old daughter and I are exploring now, after 3 different depression/anxiety meds, and a Dr. telling her she has "medication resistant anxiety." (Talk about discouraging!)

I found a network of OT's, Doctors, and nurses who are more holistic in their approach, but who really understand SPD. We are changing her diet some, adding supplements while seeing a Psychiatrist who specializes in helping teens and kids lower dosages or completely get off their meds. He tries to address the root of the problem instead of treating the symptom.

Part of this approach is having my daughter receive a treatment called the Masgutova Method once a week. You can google it to learn what it is. It is body work that teaches the body to settle down and not stay in the hypervigilant mode. Our masgutova therapist comes to the house and sets up a massage table for the session. My daughter absolutely loves it, and feels calm and centered afterwards. The idea is that as the body learns to settle itself, the treatments are not needed as often.

My daughter still limits herself in her life, and has a lot of residual anxiety. She is seeing a counselor as well.

It's a challenge that they have to own as they get older. I am trying to equip my daughter with an arsenal of skills, coping mechanisms, and approaches to caring for herself. It's hard to see your kid not thriving, and even harder to see them not quite accepting that THEY have to take responsibility for their unique make up and the challenges that come with it. since my daughter will be going to college next year, I can hear the clock ticking in terms of her being truly ready for the real world! :)

Another resource I've found to be helpful in limited quantities is a closed Group on Facebook that you can ask to join. It's called "Sensory Processing Disorder Adult Support." Although there is a lot of general complaining, it also provides a community of support and information. Someone in that group has a blog about being a young adult with SPD and another has a book out.

I wish you ALL THE BEST!!!!! Keep loving your kid as best as you can. It will make all the difference!!!

Jan 21, 2016
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High School
by: 15 Year Old SPDer

I was in public school for under 2 months at the beginning of Freshman year. I was DYING. My mom got me out of the school as soon as she possibly could. I still had problems for MONTHS that hadn't been present for YEARS. I ended up homeschooling again. Homeschooling has been amazing for me. I get to regulate most things with my mom and I love school. High School is not a forgiving environment! If it is possible and your teens are having trouble I would look for alternatives. Public High School can be torturous.

Jan 21, 2016
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...
by: 15 Year Old SPDer

If something bothers him try to avoid it as much as possible, within reason. Sometimes it is necessary to stretch to grow. I have found that if he can find something that he likes and works for him that is small, quick, and easy to do when getting or having gotten overwhelmed can help! I like having a water-bottle at ALL times. (Water helps calm the sensory system.) I also have found that specific kinds of food at different times can help. If I am feeling tired and need to be awake, I eat something crunchy. If I need to calm down I eat something chewy. SPD isn't just going to go away. Coping strategies are key. Just try to find some things that minor help and are easy, it will make life so much easier.

Oct 12, 2015
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SPD intervention
by: Pam

My son will be six in a couple of months and just started treatment for SPD. He sees a therapist for OT once a week and we use the exercises she prescribes at home 3 times daily. We were also encouraged to start him on an amino acid regiment to see if that would help with his anxiety, OCD tendencies and hyperactivity. We started a week ago using pharmaNAC 1/2 of a 900mg tablet per day. It like he's a different child. He is able to follow directions, he's smiling more, he has really improved his behavior at school, he stopped humming while he eats, less walking on tip toes and crashing around for sensory input. He's hugged us and told us that he feels good. His teacher just emailed me that he's having an especially awesome day. His Grandma spent the entire weekend with him and said he had zero meltdowns away from his routine. I'm in complete amazement of what this supplement has done for my son. My husband and I are going to begin taking it as well, as we sampled it and had many notable positive results even after one day. It's been a simple, non-drug approach that's given us astounding results. I know we just started, but I'd recommend pharmanac to anyone struggling with SPD or ASD.

Sep 15, 2015
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You don't just grow out of it
by: Anonymous

You don't just grow out of Sensory Processing Disorder. I am 14 and have it. Although my symptoms have changed (only slightly) over the years it doesn't just go away. IF SOMEONE TELLS YOU IT'LL JUST GO AWAY, THEY ARE WRONG.I have done years of a variety of treatments, yet I still have problems. I still have a lot of trouble dealing with school among other things.

It won't just go away, if you try to desensitize yourself it may help (for some more than others), but it won't just disappear.

Mar 11, 2015
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Teenager
by: Anonymous

Around age 9 I explained to my son what condition. From 9 to his current age of 16 we worked on his social speech & behaviors. Being smart means nothing if he never made a friend. He socially struggled for 5 yrs. It was hard to watch. I was scared he would become a depressed teenager. It has been tiresome & hard but he is a socially ept teenager now. He has 3 REAL friends. He speaks like a teenager with fluency.His body mechanics are intentional and appropriate. I am writing to give Moms hope...keep working with your child. He is not on an IEP & attends public school. Plays 2 sports for school. HAVE A CONSTANT WORKOUT REGIMEN FOR YOUR CHILD.

Oct 27, 2014
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responds to questions
by: Anonymous

Medication is usually the end resort because of a poor diagnosis. As seemingly average behaved children struggle with the very hard to understand..spd... families all too often end up watching untreated loved ones go down a road of frustration and dependency. The biggest problem with kids with spd is that they are expected to interact and respond to things in the average manner. Most teens go through depression abd awkwardness.. but kids with spd seem to constantly be in torment. My daughter is now almost 20 and I have to help her daily with sensory input. I still do joint computations and tactile stimuli.

Oct 27, 2014
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To: Parent with 16-year-old son
by: Susan B

My daughter is 16 too. I really didn't want to have my daughter go on meds, but this year I decided to have her start on Lexapro under our doctor's care. I have bought her a weighted blanket, taken her to OT, "brush" her arms and legs with a special sensory brush, squeeze her hands and arms and give her back, hand and foot rubs. She is more aware of what she needs since we've been addressing it. After school, she decompresses in her room by laying on her bed and watching videos. I've also made it a high priority to empower her to pursue what she is interested in to encourage her self esteem and keep her more engaged in school. Although she doesn't like school, she is finding ways of managing. Even with a lot of support from me, her anxiety level was still so high, it would take 3-4 hours to go to sleep at night. That was when I chose to let her go on meds. They have helped.

Even so, she has had a few panic attacks lately. I know it's a difficult challenge, and our kids are at that age where they really need to be on board for anything to help. Let him know in many different ways you're on the same team. He needs to know that, because as hard as it is for you, it's even tougher for him. Hang in there!

Oct 25, 2014
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mom of an SPD teen
by: Anonymous

My husband and I withdrew our SPD daughter from public school in fifth grade, after a year of incidents. The school never listened to us and our daughter had come to hate school. The final straw was when she was dragged down the hall to the office by two teachers when she was frozen in a sensory reaction and could not make a choice which was put before her. Yes, they knew she had SPD and that we were receiving OT and counseling. For the past four years, we've been homeschooling and it has made a huge difference.

Some items we've come up with to help her in situations away from home are: a fidget stone in the pocket, texture rich bracelets, her OT suggested learning to play with a pen/pencil quietly in a classroom setting, or you could have a pocket sized bean bag. Find small objects which won't draw attention, but which can give needed sensory input throughout the day, but be sure to let teachers know their purpose so the items are not taken away as 'distractions'. If you need to eat more regularly than a school schedule allows, talk to the school about working quick snacks in between classes.

Brainstorm with your teen for more ideas, and bring up things which you, as their parent, have noticed help them to remain regulated. Take heart. It's a life long journey, and your child needs you to be their biggest fan/support, even when you're tired.

Oct 01, 2014
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Frustrated
by: Anonymous

My 16 year old daughter was diagnosed at 2 1/2. She is tactile sensitive, sound sensitive and has a very limited diet. She has made huge strides through working with an O.T. But, once she hit a certain age was completely cut off through the system. She still had enormous trouble in her daily life but the O.T. said they had helped her as much as they could. It seemed that as soon as she could perform certain tasks they cut her off. She still becomes overwhelmed in social situations and avoid parties of any kind. The problem we are having trouble dealing with now is High School. She has always had difficulty dealing with the effort it required to survive a day at school. There is just too much stimuli and she would often break down the minute she got home. It is so hard to watch her in so much pain from day to day. The school is unsympathetic. I search for help with avail. Her doctors couldn't point me in the right direction and I could find nothing on the internet. This past year it has reached an all time low. She is having trouble making it to the end of the day and calls often for me to come get her. She is incredibly depressed. I have taken Her to a psychiatrist who promptly put her on anti-anxiety pills. They do not work. Big surprise. I did finally find someone who has experience with SPD and we are waiting to see if she will treat my daughter. I just hope this one works out. We are both at our wits end.

Sep 24, 2013
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some things that might help
by: Anonymous

when my daughter is feeling down, or frustrated, one thing we do is called "joint compressions". This helps her to relieve tension and stress and even pain. Look up methods of how to do them on the internet. It will probably help. Also, some of the stimuli we use with her is proper food choices. Since she is so picky anyhow, it is hard to find foods that will give her the proper stimulus. Crunchy foods like carrots and chips or candy sours like jolly ranchers and hard suckers will get her to going!! Calming is usually needed at many points of the day so the best thing is a firm hug. No light touches. A nice fuzzy blanket helps too. My daughter is now almost 19 and she is still dealing with MUCH stress and negative effects of SPD.

Sep 23, 2013
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To: I'm 15 and lost
by: Amy B

Hii! I'm 15 too and I know how you feel! My mom and I didn't realize I had this until 8th grade, so I understand how overwhelming this all can be. Anger and panic episodes are my most common problems. I basically caused a bunch of scenes, drama and problems before I realized I had to change something about my life to fix this. What helps me most is mentally preparing before going into crowds and loooooots of sensory stimuli. Please email me sometime so we can talk more! greenclover321@gmail.com

Sep 23, 2013
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To: I'm 15 and Lost
by: Susan B

My daughter is 15 and bright too. She has struggled socially with feeling overwhelmed in large groups, in loud places & with tactile issues. She has only one friend by choice, because she can handle one friendship well. She has learned to be pretty happy that way, too. I think understanding SPD is hard for a lot of people. It made sense to me when I started putting the pieces together because I was in an OT program years ago and knew a little about SPD. I ended up getting my Masters in counseling though. I found a website just last week called sensory smart parent that I think is well done. I searched for articles for teens with SPD. Maybe your parents could check that out to begin to understand SPD better. I suggested to my daughter to set up a website for teens with SPD so you can connect with others. It's so very, very hard to feel utterly alone and not understand why you are different. My daughter only began to feel motivated to address this the beginning of high school. She couldn't stop a Sensory "episode" at a school dance, and she saw how it impacted those around her. She's still working on noticing when the tension is building up and on having a sensory "diet" to help her stay steady. Her episodes exhibit with very controlling behavior, and I always knew they were not rooted in anything mental/emotional. I am going to look into amino acids. I'm also looking in to biofeedback. I give my daughter neck rubs or squeeze her arms, hands and feet to help her relax. We saw on OT and got some professional advice on what kinds of things would help her. She has learned that, for her, going into a bathroom stall (during the school day if she's overloaded) and doing a few wall push-ups or squeezing her forearms a few times will help her tension level come down. Also, focusing on your breathing, and breathing slowly and deeply is doable anywhere & can help until you are able to remove yourself from an overwhelming situation. This is a neurological-physiological connection issue. You are most certainly NOT crazy. I sincerely wish you hope, strength, and support as you equip yourself to meet this challenge in your life.

Sep 22, 2013
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Im 15 and lost
by: Anonymous

I was diagnosed with SPD in the second grade. The therapist my mother had me seeing for my anger problems thought I was crazy, she had my mother take me to see a psychologist. He informed my mother I was very intelligent and my anger problems resulted from my SPD. She thought I would grow out of it, but about two weeks ago I had an anger episode bigger than one I had had in years. This lead to my mother informing me of my disorder. I've spent all day goggling symptoms and treatments. The knowledge of my disorder has had me reflecting on my life the past few years. This is why I've never been very good at making and keeping friends. Just before my anger episode I had been personally considering answers to my behavior. I actually thought I was bipolar and had depression because I always had trouble controlling my anger and I had been crying all the time. For no reason I would just sit in my room and cry my heart out; I felt alone and abandoned. If I could find a way to treat my SPD maybe I wont feel like this anymore. If anybody reads this could you please suggest medications or anything. I'm feeling pretty desperate.

Sep 17, 2013
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Determined to Find Answers
by: Susan B

My daughter is 15 & always slipped through the cracks at school because she managed her behavior and held the feelings inside at school. She was a different person at home. I heard a radio program about SPD when she was 12. I bought the book, "The Out-of-Sync Child" and cried as I read through it. The missing piece was found! I got her into OT, but it had little impact on her physiological responses since we were starting at age 12. I have a meeting with a group at our high school this week to discuss accommodations for her. All her teachers filled out evaluations, and none of them can see any outward signs that she has any struggles. She comes home exhausted, as she has to walk through hallways all day in a school with 2000 kids. She has only 1 friend, by choice, because groups overload her. I think it will be up to my daughter and I to find answers. I am exploring biofeedback as an option. I met a Neuropsychologist last week, and he told me about a device that is very effective with anxiety, is small & portable and can be used at home. I immediately thought of its application with SPD. I'll post results in several weeks...

Oct 04, 2012
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medication
by: Anonymous

of course as parents we have to make medical decisions for our children about whether to medicate them or not, but for some medication is the one thing that keeps them somewhat stable mentally especially as teenagers dealing with SPD. I was opposed to medications as well, but I refused to watch my daughter suffer and now she has been on zoloft for two years and is attending high school and trying to make efforts to blend with her peers. she still suffers from bouts of depression, but she no longer threatens suicide.

Oct 03, 2012
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11th Hour
by:

My daughter was diagnosed with SID when she was @ 9 yrs old. We received a grant that paid for a certain amount of months of OT. When we tried to continue the sensory diet at home, it worked for a time then she began to refuse to the point where it began to negatively affect our relationship. Today she is 16 and has broken an ankle in a drunken stupor, has gotten pregnant, has resorted to cutting and suffers from panic attacks and depression. She has finally decided to get a psychiatric evaluation but after a half an hour the psychiatrist prescribed Zoloft. We will not give that to her however are open to natural remedies such as amino acids. I am afraid of coming home one day only to find that she has resorted to taking her own life.

Jun 30, 2012
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advice from a mom
by: Anonymous

My daughter is almost 18 now and I am still having trouble trying to convince her father that she has SPD... she was diagnosed at the age of 6 and is now in psychiatric care because she has depression and social anxiety. He wants to write off her disorder as either she is a rebellious teenager, or she just has down days or she is just picky. In fact, this disorder really ruins her day often. She feels uncomfortable going shopping for clothes because nothing feels right, she only eats certain things because food feels yucky in her mouth and she has a very hard time making and keeping friends. It is difficult to convince some parents and others that a child who is otherwise "normal" that they have a disorder. She is physically no different, and she is intelligent making good grades at school. Her behavior is not bad, but she struggles internally so much that it causes her mental anguish. I would recommend that anyone who has SPD would research the disorder and find ways to help themselves as much as possible if they cannot get therapy. There are books at the bookstore on the subject with great ways to help with it.

Jun 20, 2012
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Help
by: Anonymous

I'm 16 years old and I think I have spd. I keep telling my mom and she says she'll call the therapist but she's been saying that for over a month now. I showed her the adolescent/adult checklist and I have 26 of the 32 symptoms but it's like she doesn't care. This disorder has really ruined my life but she thinks it's just some form of ADHD. How do I convince her that I need help?

Jan 09, 2012
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Anxiety, depression... & SPD
by: Sharon Heller

I am reading your emails with great interest as I do believe that SPD is highly correlated with a whole slew of mental health issues, from anxiety to depression, to eating disorders, to depersonalization.... I am writing a book on SPD and mental health issues called "Uptight & Off Center." If any of you would like to share your stories or those of your children, please email me at info@sharonheller.net. The book when it comes out (around May or June) will have much on treating SPD and mental health issues from every aspect -- sensory, neurological, cranial/sacral, nutritional, detoxing, environmental, emotional/mental. Sharon Heller, PhD

Nov 13, 2011
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teen looking for a support group
by: Anonymous

im currently a senior in high school who is looking for friends. and a support group. any info and or advice would be helpful... :)

Dec 30, 2010
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Response to long hard road
by: Anonymous

Ooops. The response should have been to long hard road re' 16 year old girl...sorry. :-)

Dec 30, 2010
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Response to 16 year old girl
by: TrinaB

If you haven't done so already, you might want to read the book "The Out-of-Sync Child" by Carol Stock Kranowitz. This book has been my bible for years as far as understanding my son's SPD. It is geared toward helping younger children, but it might help you figure out some skills to help your daughter and understanding what the world is like from her standpoint and SPD issues. My son gets into episodes of hopelessness and everything is bad and nothing will get better much like your daughter. He has done that his entire life--no matter what we said we couldn't turn his thoughts toward something more positive. It can be frustrating. Sometimes just understanding their sensory issues and how it makes them feel and react to things is half the battle. Good Luck!

Dec 30, 2010
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a long hard road
by: Anonymous

My daughter will soon turn 16. She is currently on an antidepressant..sometimes it seems to work..other times... not so much. SHe is homeschooled. She doesn't want to open up to her psychiatrist and discuss her issues..she feels she will : never get any better" I am sad that she has lost hope in her self at such a young age. I haven't lost hope. I know she has potential to succeed and live in this world triumphantly, she just needs skills... that, is my problem. i don't know all of the skills or how to help her equip herself.

Dec 29, 2010
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My 16 year old son - our journey
by: TrinaB

My son is 16 now. He was diagnosed with Sensory Integration Disorder at 2 months old and put into an early intervention program. He was in OT off and on from the age of 3 months to 12 years old. He decided at 12 he did not want to go anymore because he was the oldest kid there. He is very gifted and artistic and a wonderful boy. He does suffer from Depression and Anxiety now.

Some of his sensory issues are still persistent (problems sleeping, texture issues with diet, texture issues with clothing). He was always prone to some transitional anxiety. He became suicidal several months ago as his first year in high school in honors classes was completely overwhelming. We put him into a facility in the hopes of helping him--it was awful the atmosphere there--thankfully he is out now. The psychiatrist there has tried him on two anti-depressives (Zoloft and Remeron) - Physically and emotionally he responded very negatively to these meds and the side affects are atrocious. We are in the process of weaning him off Remeron. They just started him on an anti-anxiety (Buspirone)and he has had negative side affects from that as well (nausea and near fainting). I don't know what the answer is, but it doesn't seem to be medication for my son. So just a warning to those considering that avenue...if at all possible, I don't recommend it. He also sees a counselor which seems to help him. I think a huge amount of counseling and sensory "diet" may work better for these kids in the long run. I would love to know what amino acids some of you are talking about. I am very open to a more holistic approach.

Jul 22, 2010
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Boy do i understand
by: Anonymous

I have a fifteen year old daughter with sensory integration dysfunction and my story is strikingly similar to yours as far as the treatment and outcome. she now has extreme social anxiety and is currently in homeschool. She has developed very low self esteem and struggles with many things daily. She is viewed by most as a fussy and demanding teenager who just needs to be made to do things. She is very intelligent and funny and artistic and many other great things, but unfortunately, she lives in a solitary world where she will not share herself or her beauty with anyone but me. She has no friends and is suffering from depression.

Some of the symptoms seemed to have diminished...such as she no longer eats with plastic wear, but she still wears only about five articles of clothing over and over and still only eats about twenty types of foods. It is very painful and confusing and very stressful to watch a seemingly "normal" child suffer without a so called physical disability. i am currently trying to seek kids like her to build a support group so that she may share, understand, and cope with this "thing" she has. God bless you in your quest to help your child live and be happy.

Oct 06, 2009
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Multi-sensory stimuli
by: Anonymous

I work with high school students who have a variety of different learning differences. I teach theater, so I'm constantly adjusting lesson plans to fit various situations. I am currently using a book called 101 activities for children with Sensory processing disorders. (I found this on Amazon) Lately I've been using story boards to help teach the lesson plan. (This is laying out the at story on flash cards and having the student put the ideas together at their own pace) We usually work as a group with this and my SPD students know they can refer back to a source should they forget, and can step away if they need to. I also change the external stimuli a few times throughout the lesson. This seems to be working fairly well.

Oct 04, 2009
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What amino acids and supplements?
by: Anonymous

What amino acids and supplements are you using and getting success? We have had some success using nutritional supplements as well.

Oct 21, 2008
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Nutrition and OT for Pre-teen/Teens
by: Donna

My 12 year old daughter has SPD (diagnosed at 9) Starting in 5th grade she had terrible anxiety, especially related to school (transitions, environment, separation). I can't tell you how many days I was called to come pick her up from the nurses office (she'd cry for hours, and had a stomach ache and headache).

The first therapist said it was me (encouraging emotional dependence) We finally found a WONDERFUL therapist who specializes in narrative therapy. The first thing she recommended was OT and seeing a nutritionist. My daughter now follows a "daily diet" of OT, and is taking amino acid supplements which regulate neurotransmitters and serotonin. HUGE improvement. We still have our days when I wonder how a 12 year old can act so much like a 2 year old. But we have more good than bad days. Good Luck!

Oct 18, 2008
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teenagers
by: Anonymous

My son has anxiety and is being treated by a therapist. He may need meds as well. Are you saying that it is too late to treat the sensory integration disorder? Thanks

Oct 17, 2008
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Correlation between anxiety and depression
by: Kim

Does your child have (or did he have) high anxiety (when younger)? Was a SIPT ever administered? SIPT= Sensory Integration Praxis Test? Many children with more hidden sensory integrative dysfunction (likely uncovered by a SIPT) show high anxiety. Anxiety and depression are very closely linked. Without treating the hidden sensory dysfunction, the anxiety will not go away. Continued exposure to chronic (even low grade) stress can cause chemical changes in brain functioning that will eventually lead to depression.

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