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10 Things a Parent of an SPD Child Wants to Say to YOU

4/22/2014

45 Comments

 
I'd like to take a moment to reflect on a little known sensory disorder that many times coincides with Autism.  This disorder is known as Sensory Processing Disorder (SPD).  Autistic persons often have SPD, but not all persons with SPD have Autism.

SPD involves any disorder of your senses.  This can range from over-sensitivity to light, smells or sound to an under-sensitivity to taste and touch.  SPD can also affect the vestibular and proprioceptive systems which control balance, movement and spatial orientation.

As a mother of a young son with SPD, I've come across so many people who are unsure of and even put off by his unique behavior.  Here are 10 things I'd like to say.  

Please take a moment to read, share and spread the word.  The more we educate others, the better we become at responding to these children who need us.

  • He has reasons for being fidgety.
His SPD creates an insatiable craving for tactile stimulation.  He fidgets because his nervous system isn't developed the same as yours or mine.  His nerves act as a one-way street.  His brain is telling his nerves that they should be feeling the rigidity of the seat under his bottom, but his nerves never respond to his brain letting it know they already feel it.  This creates frustration and anxiety which leads to fidgeting.  The same is true in reverse sometimes, too.  

Some sensations, though inconsequential to you or me, are overwhelming to him.  The tag on your shirt isn't noticeable to you, but for Vincent, his nerves are telling his brain that a thorn is digging into his neck.

He fidgets, but he has very good reasons for his fidgets.

  • The noises you balk at are necessary for his sanity.
The "inappropriate noises" he makes are repetitive and soothing.  To Vincent, all the sounds that you and I tune out carry the same urgency as those we prioritize.

You hear the voice of your boss telling you the deadline for your next project.  Vincent hears his teacher explaining a math problem, but also hears the humming of florescent lights, the rattling of the heater, the chatter of other students, the footsteps of the aid, the cars driving by outside the window, and even his own breathing.  Because his auditory discernment is not as strong as yours or mine, he is unable to focus on priority sounds and, in an effort to push aside all that noise, he makes sounds, himself, that help drown out the confusion.
Picture
  • He is NOT a bad boy.
Vincent does not have bad manners.  In fact, he is one of the most polite and thoughtful children you'll ever meet.  He says "Please," "Excuse me," and "Thank you" without prompting, and is always sure to give you hugs and kisses if he thinks you're sad.  When we pick up toys at the store, he often asks if we can get things for his cousins.  He is a truly loving, good little boy.  His meltdowns are not the result of being spoiled, coddled or moody. They are markers for the moment his strong little heart is overwhelmed by the 24/7 job of trying to push back against a tsunami of stimulation.

  • I am NOT a bad parent.
How often I am looked at as if I am the root cause of Vincent's more stressful moments!  How often I'm are asked if I've tried X, Y or Z to basically force Vincent to fall into line!

I did not cause his Sensory Processing Disorder.  My parenting style did nothing to bring on his sensitivity to certain situations.  I love my child fiercely and do everything in my power to see that he is cared for, protected and loved.  I may not be the most savvy parent in regards to the latest therapies available, but don't you dare mistake my novice ignorance for bad parenting.  I are fighting to make myself and others aware of this disorder, and I are doing all I can to give Vincent the therapy he needs to cope.

So the next time you see us in the store while Vincent is having a meltdown because the lights hurt his eyes and the cart feels especially frustrating to his backside, refrain from suggesting I stop spoiling him.  I might not be so charitable in my response.
Picture
  • He doesn't understand personal space.
I apologize in advance.  My son is going to get in your face - frequently.  Because his proprioceptive system is underdeveloped, he doesn't understand his own body in space. Thus, he cannot understand his body relative to yours.  As a result, the only way he fully knows he's close to you is if his face is touching (or nearly touching) yours.  Again, since his auditory sense is sometimes jumbled, he ensures you can hear him (and he, you) by being all but on top of you for a conversation.  He doesn't do this to be rude... he does it because he doesn't know any other way.  

We are working on this.  Please be patient with him.  

  • He LOVES stepping on things with his bare feet.
Owing to his intense addiction to stimulation, Vincent loves stepping on everything and anything with his bare feet.  This poses quite the challenge to us, because he even gets satisfaction from stepping on things that are dangerous.  He's broken more than one plastic toy because he craved the sensation of various objects under the sensitive nerves of his feet.

In addition to forcing John and I to keep the floors relatively free of items, this also creates a problem with shoes.  Vincent is very sensitive to the type of shoes he's willing to wear, and it's many times a fight to get him to keep them on, even when we're outside.  He's not throwing a temper-tantrum because he wants to wear his SpongeBob boots vs. his Spiderman sneakers... he's having a meltdown because his SpongeBob boots give him relief from his tactile craving while his Spiderman sneakers compound the frustration and add to his anxiety.
Picture
  • Watch out!  His movements can be very fast and forceful.
Because Vincent is mostly under-responsive to his sense of touch, he rarely cries when he falls or is accidentally run into by an older kid at the park.  He doesn't feel things as strongly as other children.  As a result, he has no baseline with which to understand his own movements.  The only way he feels his arm traveling through space to throw a ball is if he exerts extra force.  That extra movement reassures his brain that his muscles are doing what they're supposed to be doing.  This extra movement can come off as fast and forceful. He isn't doing this to be aggressive or mean.  He simply cannot adjust his momentum because he cannot feel himself moving as you and I can. 

Again, please be patient.  He is doing so much better with this, but it is a difficult skill to learn when your nerves rebel against you.

  • He is so incredibly smart!
Just because he's not comfortable in a mainstream classroom doesn't mean he's not able to learn.  It doesn't mean he's stupid.  My son is fearsomely intelligent.

His memory is better than mine, his math skills never cease to amaze me, and his appetite for his new passion, spelling, makes my heart swell with pride.  The creativity and problem-solving skills he's developed while playing adventure games with his Daddy have only proven to me that his capacity for intelligence hasn't even begun to be appreciated. Standardized testing cannot verify his penchant for architecture.  Circle time cannot concede to his superior grasp of cause and effect.  No Child Study Team will ever capture the wisdom he shows in his thoughtful, gentle care of those he instinctively understands need his affection.  

Again, my son is fearsomely, awesomely intelligent.
Picture
  • Oh, how he loves to laugh!
​Itself a very stimulating experience, my son LOVES the sensations he gets from laughing. His belly rolls, his chest heaves, his ears delight in the noise of giggles.  His whole face feels the movement of his smile as his eyes crinkle in anticipation of the high-pitched squeals he cranks out.

What joyful music.  

My son loves laughter.  He loves being "tricked" and surprised.  He loves being the cause of laughter around him.  He'll clown about or say silly things with the sole goal being laughter... glorious laughter.

  • Oh, how he loves!
There is not a malicious bone in my son's body.  He happily pets our cats saying, "Look, Mommy. Zoey loves me!  I love Zoey, too."  He'll parade around with his stuffed dog, Chase, and tell everyone what a good dog he is and how much he loves Chase because Chase is a police dog.  He'll throw his arms around your neck and tell you how happy he is to see you because he loves you "so so much."  He'll make you feel like a million bucks because, to him, everyone is his "best friend in the whole, whole world."

In a word, my son is love... pure, unblemished love.  

Please remember that the next time his sensory challenges leave you frustrated or confused. Above all, simply remember that he is capable of giving and receiving love. Next time a sensory-craver like Vincent has a melt-down, respond with love.  Push aside your own frustration and confusion because it pales in comparison to the anxiety he feels on a routine basis because of this disorder.  

Respond with love, too, to the parents of these special children.  Do not discount us as bad parents or folks to be pitied for having a "problem child."  Far from it.  We love our children and are proud of them.  We are joyed at being given the opportunity to unwrap their potential and can't wait to see how they change the world.

Use the buttons below to share this with family and friends.  Pin it to Pinterest! 
Spread acceptance by spreading awareness.  <3
45 Comments
Peggy Kalinowski
4/22/2014 04:45:50 am

Thank you for your educating information

Reply
Amy N
5/4/2014 01:20:41 am

Please tell Vincent, he is NOT alone. My daughter has SPD as well and my youngest has APD. They are 14 and 10. There are many more mile stones he will conquer with age and he will never stop amazing you are making you proud. I hold by my belief that SPD is NOT a learning disorder but a teaching disorder. I am going to try homeschooling my girls this year. We are all soooooo excited. Best wishes to you and yours!!!!

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Elizabeth Foster
4/22/2014 05:59:47 am

Although I have a grandson who is autistic and does not speak, he is such a sweet and happy young man. Yes, he does all the things mentioned in this very educational piece and I thank you for sharing it. I learned so much from it. God bless all of our special needs children. They are indeed special.

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momof2
10/5/2014 04:59:46 am

Its nice to hear from a grandparent. My MIL is in the dark about my sons Autism, and thinks he's "normal". She doesn't spend much time with him and she is only 30 minutes away. So happy for you to have your grandson and he is quite blessed to have a loving caring grandma. :)

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Kathryn H.
4/22/2014 10:06:48 am

This was beautifully written, and I hope it helps other parents in similar situations, too. Understanding others is so important! Bless you. :-)

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Gina Heil
4/26/2014 04:37:43 am

This is a great list! Thank you for sharing!

Reply
Cathy Strasser OTR/L link
5/4/2014 01:49:53 am

Wonderful article! As an OT I deal with lots of SPD kids and I wish I could post this article on the door of every restaurant and department store. Well done!

Reply
Kim
5/4/2014 01:56:01 am

This is best explanation, article For SPD children I have seen. Our 7 yr old has SPD and when it surfaced at three I remember how hard it was to find information because no one was familiar with it and thought she was a bad kid. Thank you thank you for sharing

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Sharon O. link
5/4/2014 03:37:52 am

Being in the childcare business for 35 years, this is the best article I have seen on this. One of the most important parts of this article is "my child is not BAD". So many disorders result in a child being labeled bad by both care givers AND family. When Harley use to come to my office for disrupting nap time I would let her go through all the books and puzzles in the library and others would say "she acts up at nap time to get sent to your office because you spoil her". I loved spoiling her because I could feel the love she had for me and see how her frustration disappeared. Thank Gog she had a grandmother who loved her and ALL the people involved in her life.

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Kim D
5/4/2014 06:26:53 am

This is so beautifully written. My daughter is 3 with SPD and we are currently being assessed for ASD as well. This really hit home.

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Billie -Jean
5/4/2014 07:17:28 am

Wow k have never heard of this but it sounds just like my daughter almost to a t! She also wakes up between three to six times every night at bedtime. She's two and a half and very very busy and extra defiant. Of course I love her but I admit at times parenting is extra challenging and I feel like other parents really don't understand it and they give advice of things hat work for a lot of kids but I find those things tend to work with my daughter. I was just reading things online trying to see if I could learn any parenting tips and I came across articles on "the spirited child" it basically sounds like it the exact same thing as you mention ... The spd.

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Billie Jean
5/4/2014 07:20:55 am

I was wondering if anyone else had heard of that and if it has any connection to spd. And if I think my child might have these same attributes is there somethin I should do and also is there a way how to handle things specially towards these children in ways that work best for them because I find it hard and a constant battle at times working through even small tasks with me daughter she wants to do everythin herself and is constantly on the to her brain doesn't stop and she is indeed very intelligent and seems older then most kids her age.

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Renee R
7/2/2014 10:28:25 am

Billie Jean - I learned of my now almost 6 year old daughter's SPD when she was 2.5. We found at doctor a year later that recognized our sleeping problems - the 3 hour ordeal to get her to fall asleep and the constant waking - and against my insistence, offered a medication that has greatly improved both of our lives. My daughter is very sensory seeking and while I relate to this blog and her son, my girl has her own set of seeking. She loves to read, but the incredible urge to rip paper (books, magazines) and chew on all things plastic (grocery bag, garbage can liner) leaves us with many strange looks while out in public. It's always an adventure! Find a developmental pediatrician - wait the 6 months to a year to see them, drive the 5 hours if you have to, but find someone who looks at your sweet girl and tells you that they've seen this before and we'll help you get through this and onto the next hurdle. SPD can be a glorious thing if you look at it through the right perspective.

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Colette link
5/4/2014 11:34:46 am

You have worded beautifully the exact thoughts and feelings I have been trying to tell family and friends since my spd/adhd/anxiety boy (9yrs old) has been diagnosed two years ago. Unfortunately with no insurance and limited funds for outside OT, those years have been very, very difficult but my boy has a sweet heart and I love him very much.

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Susan Dorr-Lail
6/4/2014 05:25:05 am

Wow, thanks so much for sharing! This reminds me of the very early days with my autistic son, Cameron. I also thank you as this will offer a wealth of information to a friend of mine who works with a few autistic clients in alternative family living environments. Thank you!!!

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Karen
7/1/2014 02:02:00 pm

You son and my son have alot of the same sensory challenges. As Josh has gotten older he has grown alot.

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Susan
7/1/2014 05:48:34 pm

Thank you for such a beautifully written explanation of the challenges of SPD. My son is both a seeker and an avoider but shares many of the same traits with your son. It really is hard to encompass every aspect of his life that this truly impacts and help others understand.

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Alison Bourne
7/4/2014 07:28:12 pm

So beautifully written and extremely informative. Thank you for sharing x

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Samantha
10/5/2014 04:54:38 am

I couldn't have said it better myself! It was like you were describing my son! He craves sensory input, he is distracted by noises, he doesn't do well with testing but is so smart and best of all, he absolutely doesn't have a mean bone in his body. He is one of the most emotionally intuitive people I have ever known and truly cares when he feels like someone, anyone, is sad or unhappy in any way. Thank you so much for sharing a little piece of your story.

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Julia Mitchell link
10/5/2014 05:47:03 am

The wonderful Gina Osher - The Parents Breakroom - shared this today! It is truly THE best I have read on SPD. This is my child! I want to carry copies and hand them out to each person I meet! Thank you!!!

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Melissa Henry
10/5/2014 09:52:24 am

I will not give you self pity for you are a blessed and wonderful mom, and it sounds like you have a great son. Keep informing people all about this condition. It has a lot of great information. God bless you and your son.

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Linda S.
10/5/2014 05:37:04 pm

This is a beautiful open letter. I am so glad I have access to it. My son is very much like yours and I am happy to see another proud parent willing to explain to the public.

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Leif Rivera
10/7/2014 02:14:21 am

He sounds like a perfect son to me! Loving, smart, respectful, and inquisitive...just an over abundance of these. Maybe he can show others the same and can learn from him...

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Sandee
10/14/2014 01:36:14 am

SPD isn't in the DSM5 and, as such, doesn't officially exist as a diagnosis.

Hate to break it to you, but your son IS a bad boy. Getting in people's faces when repeatedly told not to, making annoying noises, etc -- totally a bad boy! As his mommy, you're certainly entitled to treat him as "special" rather than "spoiled"... but don't complain when he's ostracized by peers and has no friends!

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Gina
10/14/2014 03:08:06 am

How very cowardly of you to hide behind a computer screen and belittle a five year old child.

Do you feel better about yourself? Do you feel like a strong, witty adult? Do you feel as if your comment, in any way, can alter how much I love my son and work to establish a safe, protective and enriching environment for him?

And do you think that your terribly misguided and woefully pathetic attack on me and, again, my 5 YEAR OLD SON, will in any way stop me from continuing to work towards educating others about SPD?

I assure you, it doesn't.

If anything, you've just proven why such education is needed.

Prayers for you, especially since you need to troll against small children to build yourself up.

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Elsi Ouzts link
10/14/2014 06:49:57 am

I would absolutely love for you to take my Briana for a week. I'll give you all the paperwork given to us by one of the premier children's hospitals in America explaining her problems and her diagnosis of SPD, ADHD and ODD. You can see for yourself how difficult it makes my life on a daily basis.

When you have to deal with a child who cries over putting clothes on because it all feels like sandpaper, or has to chew on everything, or freaks out over food because the texture is weird, then you can tell me that SPD isn't real

The reason it is not in the DSM 5 is because they're still doing the massive amounts of research any medical condition needs to be included. Until recently most thought it a part of ADHD and Autism.

So in short, don't attack us until you've been through what we've been through. The doctors and therapists and dieticians all trying to help our children succeed.

Shut the eff up and go harass someone else.

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lorena
10/14/2014 10:35:09 am

well Sandee i feel so sorry for a immature woman like you your uneducated need to do research on our kids just because you either have no kids or your have spoiled kids dose not mean all are

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Debra Nason
10/16/2014 03:26:15 am

sandee you really sound so stupid . my grandson that I am raising also has this and a lot of other issues, THEY ARE NOT BAD KIDS.

They are very loving, caring, thoughtful little people that are SO SMART. By the sounds of your post, you really could use some lessons in manners and education. As for the manners of our kids, they could teach you. They are always thinking of helping others, NOT belittling others.

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Kelly
12/20/2017 08:11:34 pm

Sandee- Ignorant responses from people like you are EXACTLY why we need this thread, more education, support groups, etc. How dare you lash out at Gina!! I will pray for you as well.

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allison
10/14/2014 03:36:15 am

Sandee...I am not sure why you feel the need to be hurtful and hateful. Your comments make it clear that you have not been around someone with sensory issues. While it may not be a separate diagnosis yet in the DSM..that does not mean it doesn't exist.
Sensory Issues are very real and there are many professionals that acknowledge it as a piece of ASD as well as separately. Perhaps you should research a bit more before making ignorant comments in the future.

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Gina
10/14/2014 06:41:05 am

Also,

I wanted to take a moment to thank all of you who have written in / commented to express your support. Please know of my prayers for you and your children.

Together - we can and WILL make a difference for our children. The best way to help them succeed is to pave the way with understanding, kindness and love.

{hugs}

Reply
Sarah H.
10/14/2014 06:53:08 am

You're remaking the world for your son. Trying to make it grow and see how beautiful a world with our children is. Then someone comes along that makes you feel like you haven't made a dent that the world is cruel and will never change. Focus on all the positive comments and the dent you've made in the world.

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Rachel P.
10/14/2014 07:31:21 am

Just to let you know my 5 yr old boy was diagnosed with SPD 10 days ago and your article was one of the first ones I read. I had never heard of SPD before then so your article was really informative and was l an absolute lightbulb moment for me. Everything my son has done, which had completely baffled me for years, just fell into place.

So THANK YOU for opening your heart and writing such a amazing article. I felt like you wrote it just for me :0) There is not much information, support groups or charities here in the UK so I really do appreciate you sharing your thoughts and feelings and educating us all. Xx

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Melissa
10/14/2014 08:59:11 am

SPD is very real! Not only does my son have it and deals with it everyday, I have it as well. My son does have a diagnosis from his OT and his pediatrician, just because it's not in a book doesn't make it not real. Those books are update constantly because we are constantly getting new information. Neurological disorders are hard to diagnose and I give credit to the drs who spend the time to distinguish between different diagnoses so we can get the best support for our children. Sandee you are a misinformed, rude, and uncompastionate person. My son is 8 he has lots of friends and is loved by many outside of his family.

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Christina
10/17/2014 05:24:55 pm

I am guilty of critizing parents' parenting skills in grocery stores, malls, restaurants. ..you name it. I feel stupid and sad for it. Every time I come across an article like this it reminds me of the person I was. I would want to personally say sorry, face to face, to all of the parents and children with who I felt frustrated with. And I can't. To all of you parents and guardians of these children, reading this comment..I am sorry for my stupidity. You guys deserve to be cheered on, you're awesome.

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Tina Chapman link
11/14/2014 02:31:02 am

Nutrition is really changing a lot of lives for kids with autism & ADHD. I have learned so much over the past year about how the foods we eat contribute to the diseases and health problems. I have listened to several people talk about how their child has changed with diet change.

Reply
Sarah Muller
10/2/2015 05:09:11 pm

Thank you for this well written explanation of SPD. I am a mother to an SPD child, and a professional who works with children with sensory needs. This article will be very helpful for others I know who have SPD children. Thank you and God bless.

Reply
Stacia
10/3/2015 01:04:50 pm

Excellently illustrated and remarkably identical to my son's SPD that accompanies his autism. Thank you for sharing this insightful observation. You're a great parent to s great kid!

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Maria
10/4/2015 09:20:29 pm

Thank you for this. I had not heard of SPD, but this is a beautifully written piece. I think the best things as parents that we can do is just support one another, but the more information we have better we can do that.

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Leisa W
9/16/2016 06:52:29 am

Thank you so much for sharing you story! It was like reading about my son now and as he gets older (he's 2-1/2). I can relate to everything you wrote.
Thank you putting how I feel into words, your message is beautifully written. It sounds like you are wonderful parents to a beautiful boy both inside and out!
Stay real and keep doing what you are doing because you are raising are raising a wonderful son and spreading the message about SPD. Thank you again and give you son a extra hug for me.

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Ada
3/1/2017 11:09:09 am

Aww, what amazing post. Very beautiful and touchy. My son suffers from focal seizures which a lot of people do know understand nor know much about. You are doing an awesome job.

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masingu link
6/5/2018 03:32:53 am

Thanks so much for sharing this piece! Having worked in an Institution which caters for persons with special needs I find this piece of great help to parents who find themselves in this situation. You are great.

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Gigi for gr-grand
9/12/2018 07:23:49 am

Lots of coping skills needed daily. I have a 9yr old grandson who frequently ramps up his need for "extreme" physicality. Running through the house, high-jump landing on furniture and leaping at people are his norm Problem? I'm 75 with some balance issues and arthritis. What to do when he squeezes my hands or jumps on me like piggy-back etc? No discipline seems to change this. Avoiding visits is not ideal. I feel like I need a SWAT shield ! Any suggestions welcomed.

Reply
Gina link
9/21/2018 12:17:11 pm

Hello!

My son is now 9 years old (TODAY!!!) and it seems they could be best friends. Ha ha. When Vince does this, I tend to give him an outlet, STAT. I recently purchased an individual sized trampoline for the basement, and an actual bouncey house for the backyard. I basically tell him to run off some energy which helps considerably.

If he's squeezing, remind him that he's stronger than he thinks because he's growing so fast, and redirect him towards something gentler. Most kids don't realize they're being too rough until they're reminded.

A link to a similar trampoline can be found here: https://www.amazon.com/Stamina-35-1625-36-Inch-Folding-Trampoline/dp/B000JC2ZHA/ref=sr_1_6?ie=UTF8&qid=1537546527&sr=8-6&keywords=small+trampoline

GOOD LUCK! <3

Reply
Irene Valdez
10/20/2019 10:36:07 pm

This is my son too! Sharing this post with parents in a special needs sacrament class!

Reply



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