For the first year we knew my son had Sensory Processing Disorder, we didn’t exactly hide it but I didn’t talk about it publicly. Then, once I started letting friends know about it, I decided it was better to be honest than to try to hide the fact that we were facing SPD as a family.
It really made me think about how often SPD is something that families deal with in silence. It’s something that stays within our doors. It’s something we don’t feel like they can talk about publicly. Based on my own experience, people often just don’t understand what I’m talking about, or they look at me as if I’m crazy. Am I making this up? Am I just some hovering mother who’s overreactive? Even though I knew the truth in my heart, these questions haunted me.
I actually grew up with a chronic disease — allergies. Now, when I tell people I have severe allergies, a lot of people scoff at the fact that it may have some kind of ongoing impact on my life. Most people who have allergies get the sniffles around hay fever time, but they’ve never been hospitalized. It makes me so frustrated I want to scream the rooftops that my issues are real. Just like I want to scream and fight to make folks understand that my son’s problems are actual.
We often don’t think of the term chronic when we talk about sensory processing disorder. But it is. Chronic illnesses really do take a toll on everyone. They can get better over time, and that’s certainly what I’ve watched with my son after a lot of hard work on all of our parts. He has gone from hitting, biting, head butting, throwing and screeching on a daily basis to being a much more calm and in-control kid. However, the moment I let my guard down about SPD or forget about it for a moment, it still rears its ugly head. But to much of the outside world, my son seems just fine. He’s social. He can talk to people. He laughs. He plays on the playground. So what is there to see that’s wrong with him?
What they don’t see is the child who has an absolute meltdown at the thought of entering a pool that is slightly chilly, of having his body washed with a wash cloth of having pajamas askew — making him burst right out into tears.
Sensory Processing Disorder is the elephant in the room. Coming out and declaring it on the Internet made me nauseous because I’m afraid of the judgements I might receive from other people having been judged my whole life for having an “invisible” chronic illness. There have to be thousands of other mothers who worry about the judgements they will receive. We all ask ourselves, should we tell our parents? Should we tell the school? Should we tell our friends? But only by talking about these things can we actually take away the stigma that (1) we carry within ourselves and (2) other people place on sensory issues. Whether it’s SPD, Aspergers or Autism, just because you can’t see a cast or a wheelchair doesn’t mean this neurological issue isn’t there.
It’s been heartbreaking when people question what’s going on with my son. When they question what kind of problems could he possibly have because there isn’t some waving red flag. Just like it’s crushing for me when people question me about my allergies. I don’t enjoy getting sick all the time. I don’t enjoy feeling rundown. I don’t enjoy having to take powerful steroids to manage the inflammation in hopes of skirting yet another sinus infection.
What must it be like to be my son? I have to image he doesn’t enjoy the feeling of that cool water on his skin. He doesn’t enjoy having people randomly come up and touch him or being told to hug them. He doesn’t enjoy the unbelievably loud noises in public restrooms that make his ears feel like they’re going to bleed. There are lot of sensory things that he not only doesn’t enjoy but experiences as painful. One thing he should be able to enjoy are people believing him., people understanding him, and people not questioning how he is feeling, because his feelings and perceptions are real.
When I put this on the web, I understood my worries don’t have to do with him; they have to with me. And so, as a mom, I’m still working on that. I’m still working on being truly authentic not just within myself but outside of myself with other people. Just like I pulled off the band-aide yesterday and told the world that my son has SPD, I’m going to quell the fears I have. Because to be honest it doesn’t matter if other people judge me. It doesn’t matter if other folks don’t believe me. What matters is that I believe my son, and I’m willing to fight for him.
Related articles
- Ripping off the Band-aide (voicesofsensoryprocessingdisorder.com)
- Understanding Your Child’s Sensory Signals (thesensoryspectrumblog.com)
- I’ll Tell You Why … I Can’t Wear Those Clothes! (thesensoryspectrumblog.com)
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Jennifer Hughes aka spdmama
A mom evolving as she navigates the waters of having two children with sensory processing disorder and sharing her knowledge. I’ve started The Sensory Spectrum, The Jenny Evolution and now Voices with Sensory Processing Disorder. Only through education and sharing can we become stronger as individuals and as a community.
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I hear you! I have suffered from debilitating migraines since I was a young child. People used to tell me that I made myself have a headache. I refuse to let the same be done to my son, who has SPD. It’s hard as it’s those same family members who didn’t believe me I have to convince for my son. All and all they are doing okay with it. Though I wonder if they just put on a good face for me?
I love love love your bravery and passion for fighting for your son! Hurray for you! You talk about so many of the things we have been through with our four SPD kids too. It’s the reason I started my own blog- there have to be more families out there, silently struggling, who deserve to know they are not alone! It’s so isolating, this life. We have to fight to be believed, be heard, and be understood. I’m grateful there is a place like this to share and hear other people’s stories!
We went through the same process. We didn’t exactly keep it from our friends and family, but we didn’t tell them at first either. We couldn’t decide if making the information public would make things better or worse. We finally decided to tell people, to tell the world really. Blogs from parents everywhere going through a similar situation have really helped us, so we wanted to be able to contribute in case our stories might help someone somewhere.
I three sons that have these learning issues…like children it know up in different forms. Years ago my oldest 19 now it was spatial processing disorder. My middle son frontal lobe disorder. It take 3 diagnosis to to get to get the help he needs behavior and stress anxtiey followed but even at that you still cant get the help. You have to get doctors caught up. And even at that they still dont know what your talking about because it is not your field. My son has to go to the bathroom alot. The school lis another thing that we deal with constant battle there. Teachers are not taught about it and if so very little. Then they are told that the therpist at the school are the ones to help the children and I have so far that is not working. We want do much for our children but it seems that our schools rushing our kids through they our not learning as im finding with my 19,year and college where the School toldo us we got this and they didnt. The more we put this out there about spd the more people will know and the more teachers can be trained to know…
I do understand about trying to explain to others SPD it is very. Implied and so differs t with each child and my experience has been a lot of explaining. However, I see it as the opportunity to get the awareness out there so parents can learn and maybe achieve early detection like we did! I know I had never heard of SPD when our 2 year old was diagnosed so the more other parents can know the better their child has at getting the right therapy that works for them.
I completely understand the feeling of trying to explain an “invisible illness” that’s what I call SPD…but I have told ppl from the very begining. It is extremely difficult as our daughter (almost 3 now) speaks very well for her age and from the outside appears very “normal”. By most accounts she seems very typical, however, her SPD is not severe. When she’s observed in terms of qualifying for assistance we are continously told she’s not bad enough. It is hard enough trying to learn about this elephant without the support of so-called “professionals” that won’t even follow the word of the O.T. she’s been seeing for more than a year. So stuck to just “accept” that my daughter will struggle her whole life because her handi-cap is not recognized or as bad as others…UGH is right!!!
I read this and have tears in my eyes. It describes how i feel about my son having SPD so well. It is almost as if i would have written this myself, it feels amazing to know i am not the only one who feels that way. There are others out there it isn’t just us against the world and all of the people in it (who are not always the most understanding or even kind). Thank you, thank you, thank you for writing this! For helping us all face the big elephant in the room we all so often skirt around or try to ignore hoping it will go away.
I am so relieved to know that there are other people out there that feel and go through the same thing. I have had to educate so many people it gets so tiring. I found out that one babysitter couldn’t deal with her and kept her locked in a dark room left to cry. So now not only do I have to deal this SPD but also PTSD. My daughter is now 7 years old and was very fortunate to have her 1st grade teacher who went back to get her masters and studied SPD. When the teacher told me this, I about cried. Someone can talk and understand my language. The other blessing is that she will continue to have this teacher in her 2nd grade at school. There are some days that I will get many e-mails from her asking me for guidance to a situation to help Trista. I don’t have an IEP plan since the school says we are working with you and will continue to do so. They have 2 sets of earplugs for her and have ordered a weighted blanket just for her. But on the other hand, she does not get invited to playdates or birthday parties because she has had some outbursts at school and the other kids/parents don’t understand. Trying to find a babysitter is impossible and therefore time away is very far and few. This is such an isolating thing. I wish I knew what to do or say the explain to my daughter the reason why she doesn’t get invited:(
One thing that I do appreciate is knowing there are other people going through the same thing.
Hello… Thank you for writing this blog. I know firsthand how you feel about SPD. About the pain and uncertainty that comes with SPD. It’s a huge decision to make knowing deep down how other people might react and/or feel when letting others know about SPD. It’s scary and it’s “unfortunate” but with my experience there has not been even 1 person who I’ve spoken to who gets anything I say about SPD. I have one son with SPD but I myself also have SPD. ACTUALLY I haveboth an Auditory and Sensory Processing Disorder and would like to know if there are Any others who are Adults with SPD(s). This disorder has made my life Unbelievebally difficult. It also affects my learning. It takes me about an extra 4 or 5 tries at something to “actually get it”. It’s hard to be “social” when there’s so much “information being directed all around me. All the “Noise” gets mixed up and then it’t Sensetory Overload. . All I feel like I Need to do is to RUN Out (which I don’t do). I stay but then think back on things and realize what I was doing really, is “Withdrawing from the world and from myself. And have found other people around me who have considered my quietness as being “Anti-Social” at best. It’s been extremely difficult making and even keeping friendships and relationships. There’s a lot more going on inside that makes it so much easier just to keep to myself. This along with many of the other SPD and Auditory SPD Symptoms are extremely painful to both experience and to have to watch and deal with others concerning my son, desprately trying to get others to understand something that “(they don’t see)” has only proved to be more frustrating/upseting than what is Needed in our families daily struggles. This seems so unfair and I would like to know if there is anyone else out there who is or knows of any other Adults with SPD(s)??? And How they deal with this… is there anything that’s been found to help with these difficulties,. To “maybe” change them into something more Positive (if possible). Am I even being realistic in my hopes that this is something that can be dealt with (as an adult with SPD(s) to help make life more bearable and less stressful??? I have read some information about SPD (and it’s all great information). The information seems to be directed only about children “Who have parents who are rallying around their children (Which is absolutely wonderful)… but those children are also going to be Adults with SPD (someday) just like myself… And even thouth the stigma of speaking about these SPD(s) can be daunting… It’s good to Not sweep these issues under the rug anymore because the more knowledge out there Lhopefully someday this will be an easier topic to discuss and Hopefully easier to deal with ourselves as everyone will grow up and Need to start to advocate for themselves. Thanks and any positive feedback would be welcomed.
I have SPD im 46. I have spent years wondering why I was different.I’m a artist.I thought maybe that made me different. Evan as a adult I still have trouble understanding things. You spend years trying to hide your disability. Just recently I was diagnosed with a beavy of health issues. Which put me off the job market. Big realty check. Which puts me where I’m at now my children adovcate and very outspoken about getting my kids the help they need. As for my needs it is every day that I strife to look for help to work my way of my learning disabilitys. I know that by staying strong working my way through every task and trying to teach myself will be one of the answers.
Thank you, thank you, thank you. It is so nice to hear this. My son 2.5yrs has just been diagnosed with SPD! I had never heard of it before – but boy how the light bulb went off. It is so him. It is saddening to be told from people (even some family members) that there is nothing wrong with him and they think I’m overeacting and should get a second opinion. It really nice to hear so many of you are in the same situation.
Ugh. Sheree your story is the story of a thousand families. Just remember, you’re the mom and you know your son. Block out the voices of your relatives (we all have them!) and listen to your instincts. They will lead you in the right direction.
I think that most people know that something is unusual and are relieved to learn what the issue is. My son is sensory seeking, and most people have been wonderful to us. They understand it, because they see it. Most are open to learning. My son is 12 now, and is very attuned to his own sensory needs. He is able to find ways to meet them now BY HIMSELF. He has lots of friends and does very well in school and sports. He plays the guitar well, and is happy. So many people have helped us along the way. Preschool teachers, elementary teachers, his friends’ parents etc. I would much rather others understand than judge. Of course there are those who judge no matter what, but it doesn’t matter if we tell them or not. Hang in there, it does get much better!!! It’s so much work, it’s exhausting and overwhelming! Then it slowly becomes more manageable. Now it is just a small part of our life, because he has integrated so many strategies into his life that help (for example chewing gum daily). Good luck!
Hi, Paula.
I’m so glad you wrote about your son’s triumphs and learning how to face his sensory challenges. As an adult with sensory integration issues, I agree with you about the resiliency children have. I grew up in a time (1970s) where no one talked, treated or even knew about sensory integration challenges. My younger self found relief with horseback riding, collecting horses, etc. as well as dancing, playing the violin, acting, learning sign language – the equivalent of today’s equine therapy, auditory therapy and occupational therapy. I didn’t know. My parents didn’t know, and although I grew up feeling the world was beating up on me, I also found what I needed to survive and even prosper.
For the parents who face this challenge now, thank you for helping your children. They might not be able to tell you how much it means, but I would like to tell you it means absolutely everything to have your help. Following the interests your child has, like horseback riding, martial arts, orchestra, etc. is a good starting place in dealing with sensory challenges. Given the chance, a child can tell or show you exactly what they need.
And as Paula writes, the challenges become easier to handle. Several years ago, when I was 35+ years old, I had neurofeedback training, vision rehabilitation, acupuncture and the Tomatis Method listening therapy, and no longer feel the world is beating up on me. The Tomatis Method is often used with children who have autism and I found it integrated my mismatched vestibular and proprioceptive systems.
I encourage people to find a therapy that works for them and try it. Recovery from sensory challenges is possible!
Kindly,
Kimberly
I have three boys with SPD. They all differ with the different systoms. It is very hard getting the school to relize thier learning needs. So much that my 19 year old is about a year behind because of him falling behind in college. My middle son has gone through so much that is has start a bulling behavior from some of the teachers. They do this to put some time punishment. For imstanse riding the short bus for bad behavoir. Very frustrating trying to get people to understand what my sons needs are and that SPD exist. It can be very overwelming at times trying to find help. Or they go around saying add or adhd he doesnt have Add or Adhd. This is just a bandaid. What would work for son is more help for education. And more understanding.
Wow. Thank you. I’ve got to say I’m struggling which must mean its hurting my son. I feel like a horrible mother because I can’t protect and understand my son. Recently he was diagnosed with SPD and I’ve told few people. Most people say oh that’s normal. Every fiber in my body has told me no don’t force him into things, listen to him, this is not normal. I listened to him and was often judged as spoiling my son. My friend often says “spank him, he will be fine” It’s the last thing on earth I will Ever do. That’s how far off the people I know are. They don’t relate, I feel alone. I feel overwhelmed and beaten at times. I will always get back back up 2x stronger, pick up my son and love him. He doesnt deserve this everyday, every minute battle. This gives me hope, inspiration and tears in my eyes. Thank you!
Thank you for the wonderful feedback! SPD is often the silent elephant in the room. And so many people completely misunderstand what SPD is and how it affects kids. Listen to your instincts and they will guide you well. We’ve been doing ped OT for three years now and now I have a happy and thriving kindergartener. It doesn’t mean we still face SPD, but my son (and his parents) have learned how to manage SPD so much better.
I’m an adult living with sensory integration challenges. Some of the replies mention migraines and I wanted to share a piece of advice I was given. Migraines are something most people can relate to and they understand lights, sounds, etc. hurt and make you nauseous when you have a migraine. If you find yourself talking with someone who doesn’t understand sensory challenges, they might get it if you say that it’s like having a migraine every day.
Thank you for this. As a dad of a 7 year old with SPD, hypotonia, dyspraxia and dysgraphia, my wife and I are so often exhausted just from daily life, and then to have to explain to people – including family and friends – the magnitude of his struggles adds near-delirium to the exhaustion. Our son is so amazing and sometimes SPD feels like a super power, and following out the metaphor, in the wrong setting, he quickly becomes an outcast, a freak, a problem that “normal” people do not understand. So being able to read of other parents with similar struggles is such a comfort.
I’m so glad to hear that you’re finding comfort in other people’s stories. It’s so easy to get isolated and feel like we are the only ones dealing with these issues. (BTW — your Avatar rocks!)