Over the last 11 years of raising a child with Sensory Processing Disorder, I have come to learn what it really means to hold my tongue. Countless family gatherings, numerous phone calls with my concerned parents, and sideways glances from extended family… all have built up inside me over the years. It is quite clear that my family not only loves me, but they love my son as well.
The problem is that since they don’t live it and breathe it every day of their life, they just don’t know what to say and how to respond in a helpful way. So many times, the words were at the tip of my tongue but out of fear of being disowned, I remained silent. Today, I’ve joined thousands of other parents, to gather our strength and share what we secretly wish we could tell our families about raising a child with SPD (sensory processing disorder).
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Before we begin, we need to tell you something extremely important.
Thank you.
Really, thank you from the bottom of my heart and from the hearts of thousands of moms and dads that have wanted you to hear these words but didn’t know how to tell you. Some of these things might not be easy for you to hear and believe me when I tell you, that for us, they aren’t easy to say. However,by getting this far, it tells me that you are either A) a parent that wishes they had the words to say to their family or B) a family member that wants to be supportive and helpful. Either way, you care. You want to help, you want to show support. For that we thank you. Because, the truth is, we need you!
50 Things Parents Secretly Wish They Could Tell Their Families About SPD
Please know… It has nothing to do with a lack of discipline!
No, I can’t spank SPD out of my child.
No, he’s NOT just being a boy.
No, she is not being naughty.
She can’t suck it up.
He isn’t a brat or a baby!!
She’s not spoiled.
He’s not manipulating me.
It’s not her fault.
We aren’t just bad parents.
Believe us, we’ve tried it all.
SPD is a real medical condition.
No, he won’t grow out of it.
It’s not just a phase. It’s real.
SPD is not a made-up diagnosis.
Please, stop thinking that my child will magically cured one day.
I know there was “no such thing in your day” …BUT IT’S A THING NOW !!!!!!
The struggle is real.
Just because you don’t always “see” the struggles of SPD when you’re with our SPD child, doesn’t mean the struggle isn’t real.
Just because they can hold it together at times doesn’t mean the problem doesn’t exist, is manipulated or is exaggerated for the parent’s benefit!
It’s a daily struggle.
Parenting a child with SPD is even more draining than parenting a toddler, the meltdowns are NOT tantrums. We need a break.
I am not more patient than you. I act patiently because my child needs me to.
It’s so hard, but I am doing my best!
My child is not like every other child.
NO, he will NOT fit into your square hole of expectations.
My child does not need to be fixed, that they are perfect just with who they are.
Yes, I KNOW he will be fine.
It is hard. And I wouldn’t change him.
See his love, his empathy, his compassion.
My child IS amazing.
He won’t eat when he’s hungry enough.
He won’t sleep when he’s very tired.
He’s not just a happy silly hyper kid..he’s overloaded.
Needing a chewable necklace does not make him a baby.
I am not making all of this up.
No, I’m not crazy.
I do not over manage his day and life.
We can’t go on vacations without planning all the details, it doesn’t mean I have OCD!!!
We can’t go to all the family gatherings… I really have to stick to his routine or he won’t function.
When I say “no candy” I’m not doing it to be mean to him. I’m doing it because I love him.
Your desire to hug my child does not trump his need for you to respect him by not touching him when he doesn’t want to be touched.
All this “obsessing” over his life allows him to function so well that you can’t tell he’s anything other than a little quirky.
Please don’t judge me, I’m already judge by the world.
Even though I don’t accept your invitations, it would be nice if you could visit us and be supportive, or if you could plan the gatherings in a timely manner that we could join you.
More than anything, I need you to know…
I need help.
I need you.
In fact, I need you more than you know.
Signed,
Every parent who’s child struggles with SPD
This post is part of a monthly series called Parenting Children with Special Needs. This month’s topic is “what we wish you knew…“. Read more on this topic by other parents of special needs children here:
26 Things Every Special Needs Mom Needs to Know | Natural Beach Living
What You Don’t Know President Trump | Every Star is Different
What I Wish You Knew About Special Needs Parenting | My Home Truths
What I Wish You Knew About Being the Parent of a Child with RAD | The Chaos and The Clutter
What You Need To Know, Betsy Devos | This Outnumbered Mama
What I Wish You Knew About Parenting a Non-Verbal Autistic Child | Kori at Home
What I Wish You Knew: Building the Grand Canyon Size Knowledge of A Special Needs Mom | 3 Dinosaurs
More Adventures in Sensory Processing
Wow! I love it! So many phrases that I’ve held back myself or said so many times.
I love this list because it speaks to who I am and how I feel some days.
Thank you so much for adding to it! It makes me feel great to know we are making our voices heard.
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I love this list because although it comes from a variety of people, it really sums up how each of us feels.
Yes. I love the collective voice and the strength in the collaborative words!
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Amen! This list is applicable for ASD, ADHD and so many other conditions too. It’s as if you’ve read my mind…!
YES!!!
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This list is so right on. From the judgement, to not being able to go on a vacation or trip without weeks of planning, to others thoughts that we can “spank” or discipline it out of our child. Thank you for posting this list, every word is the truth.
I didn’t know my child had SPD until just recently and she is 6 years old. Her behaviors were always overlooked or rationalized by her pediatrician, the school and other childhood authorities. We finally found help through an Occupational Therapist who diagnosed her, as she didn’t have Autism, ADD or any other “real” diagnosis, which is also a big issue parents with SPD kids will find. SPD is REAL, but debated by professionals. If you are struggling with a child that is “different”, but the pediatrician or others say he or she is fine, try Occupational Therapy. We didn’t need any official diagnosis and it has helped our daughter SO much! We wish we would have started her earlier, but we just didn’t know it was an option. I remember reading blogs, desperately trying to find out what would help our daughter, so if this is you, please look into Occupational Therapy!
How do you tell people outside the family and outside your scope to stop touching (basically assaulting the senses of) my son?? My husband is of the mind that he should just get over it!! How do you get a diagnosis and how to go about changes that old fashion mindset? I’ve watched him for years struggle (and being off synthetic dyes helps but obviously doesn’t help him with hands people…)
That is really hard. One of the hardest things is to change the way others think. If you are concerned about your child having sensory needs beyond strong sensory preferences, I would talk to your pediatrician and ask for a referral to an OT or a neuropsych evaluation.
Wow. I’ve just stumbled on your site (via the “fidget spinner” viral post) and I’m enthralled. While my son doesn’t have SPD, he does have some sensory issues (I’m not sure there’s an actual name for it, just certain sensitivites or something) and a lot of energy. Thank you SO much for the link in this post to the chewable jewelry. My son’s clothing will be grateful! 😛 And thank you for the other posts. I need to keep exploring this site as I have time here and there because I feel like you probably have a lot of things on here that I’ll find helpful.
So glad you found your way here! Let me know if there is anything at all I can help with.