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.
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.
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.
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.
We are working on this. Please be patient with him.
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.
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.
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.
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.
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.
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Spread acceptance by spreading awareness. <3
4/22/2014 04:45:50 am
Thank you for your educating information
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!!!!
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.
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. :)
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. :-)
4/26/2014 04:37:43 am
This is a great list! Thank you for sharing!
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!
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
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.
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.
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.
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.
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.
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.
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!!!
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.
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.
7/4/2014 07:28:12 pm
So beautifully written and extremely informative. Thank you for sharing x
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.
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!!!
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.
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.
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...
10/14/2014 01:36:14 am
SPD isn't in the DSM5 and, as such, doesn't officially exist as a diagnosis.
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.
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.
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
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.
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.
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.
10/14/2014 06:41:05 am
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
10/20/2019 10:36:07 pm
This is my son too! Sharing this post with parents in a special needs sacrament class!
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