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50 Things SPD Parents Secretly Wish They Could Say to Their Families

By Lemon Lime Adventures 18 Comments

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).

 50 Things SPD Parents Secretly Wish They Could Say to Their Families

* This post may contain affiliate links for your convenience. Click here for my full disclosure.

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

Parenting an Angry Child

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.

What is Sensory Processing A Beginners Guide

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!

Who is That Kid

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.

My Kid Hates Fireworks
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

50 Things SPD Parents Secretly Wish They Could Say to Their Families

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

40 Things Parents Secretly Wish Their Friends Knew about SPD

THINGS TO NEVER SAY SPD

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Comments

  1. Renae Eddy says

    January 23, 2017 at 12:35 am

    Wow! I love it! So many phrases that I’ve held back myself or said so many times.

    Reply
  2. Cassie says

    January 23, 2017 at 3:38 am

    I love this list because it speaks to who I am and how I feel some days.

    Reply
    • Lemon Lime Adventures says

      January 23, 2017 at 10:45 am

      Thank you so much for adding to it! It makes me feel great to know we are making our voices heard.

      Reply
  3. Christina says

    January 23, 2017 at 10:32 pm

    I love this list because although it comes from a variety of people, it really sums up how each of us feels.

    Reply
    • Lemon Lime Adventures says

      January 24, 2017 at 9:58 am

      Yes. I love the collective voice and the strength in the collaborative words!

      Reply
  4. Kirsty @ My Home Truths says

    January 24, 2017 at 5:37 am

    Amen! This list is applicable for ASD, ADHD and so many other conditions too. It’s as if you’ve read my mind…!

    Reply
    • Lemon Lime Adventures says

      January 24, 2017 at 9:57 am

      YES!!!

      Reply
  5. Beth says

    March 2, 2017 at 8:37 am

    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!

    Reply
  6. Melissa Hendricks says

    March 22, 2017 at 1:08 pm

    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…)

    Reply
    • Lemon Lime Adventures says

      March 22, 2017 at 8:30 pm

      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.

      Reply
  7. Kay S. says

    May 8, 2017 at 12:15 pm

    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.

    Reply
    • Lemon Lime Adventures says

      May 9, 2017 at 12:57 am

      So glad you found your way here! Let me know if there is anything at all I can help with.

      Reply

Trackbacks

  1. What I Wish You Knew: Building the Grand Canyon Size Knowledge of A Special Needs Mom | 3 Dinosaurs says:
    January 23, 2017 at 4:00 am

    […] 50 Things SPD Parents Secretly Wish They Could Say Their Families by Lemon Lime Adventures […]

    Reply
  2. What You Need to Know, Mrs. Betsy Devos - This Outnumbered Mama says:
    January 23, 2017 at 5:01 am

    […] 50 Things SPD Parents Secretly Wish They Could Say Their Families | Lemon Lime Adventures […]

    Reply
  3. 26 Things Every Special Needs Mom Needs to Know - Natural Beach Living says:
    January 23, 2017 at 8:45 am

    […] 50 Things SPD Parents Secretly Wish They Could Say Their Families | Lemon Lime Adventures […]

    Reply
  4. What I Wish You Knew About Special Needs Parenting - My Home Truths says:
    January 23, 2017 at 6:04 pm

    […] 50 Things SPD Parents Secretly Wish They Could Say Their Families | Lemon Lime Adventures […]

    Reply
  5. Ready set go. Life without OT  | Sensory Boy says:
    January 24, 2017 at 2:45 am

    […] https://lemonlimeadventures.com/things-spd-parents-wish-they-could-say-to-their-families/ […]

    Reply
  6. Sibling Relations: Why It's Impossible to Find Balance in a Special Needs Family - My Home Truths says:
    February 22, 2017 at 2:01 pm

    […] 50 Things SPD Parents Secretly Wish They Could Say Their Families | Lemon Lime Adventures […]

    Reply

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  • Today I had a photo shoot for an upcoming project that starts March 7th.
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At first thoughts of ... “I’m not cute enough. 
I’m not skinny enough.
My teeth aren’t white enough.” ... flooded my head.
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And then I took a moment to celebrate the true wins.
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I CAN smile again.
I DO have joy again.
I HAVE a lot to be excited about. .
Two years ago I couldn’t say those things honestly. .
So today... I celebrate the small wins, the big wins and the wins that are yet to come...
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What can I celebrate with you?

#embraceadventure #calmthechaos #ctcwin #parenting #launchlife
  • A simple classic game. But so much opportunity for connection. 
What’s your favorite family game?
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At 13 I have to embrace every moment he would choose to have dinner with his mama. 
Every day might not be perfect but I choose to use moments like these to anchor me for when times get hard. 
How are you connecting today? 
#itstartswithconnection #raisingsuperkids #calmthechaos #autism #parenting
  • “Papa can you play with me?”
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His response could have been ... Not right now...
I’m busy.

But instead ... he simply said ... Sure!
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These two are like peas and carrots.
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This is a little girl that loves her papa.
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This is a papa that loves his little girl. .
What appears to be a quick game of tic-tac-toe...
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Is really just one of many examples of unconditional love.
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I get so much joy from watching their relationship grow and develop. 
5 minutes can make a huge difference. 
#itstartswithconnection #calmthechaos #raisingsuperkids #fatherdaughter
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He wasn’t hit by a football🏈
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He wasn’t being careless⁉️
.
He didn’t step on them on accident 🤦🏻‍♀️
.
No. He broke them because he was mad. 😡
.
He had a rough day at school (understatement)
.
They use a “seclusion room” when children are disregulated
.
Today my son could NOT calm on his own. .
He shared he went between screaming and throwing his glasses to try to get out...
😡
To crying on the floor thinking he’d never get out.
😭
This was the result. .
I could get mad that we have to get new glasses.
I could scold him for having a fit at school.
I could punish him for all the destruction.
.
Instead, I choose to connect with him.
. 
He’s been isolated enough and that didn’t end well.
.
Tonight we will connect and plan how to alter the results when he gets upset.
.
What choices could he make differently?
What could he say? 
How could he calm himself next time? 
#itstartswithconnection #calmthechaos #parenting #autism #raisingsuperkids
  • Today I had a photo shoot for an upcoming project that starts March 7th.
.
At first thoughts of ... “I’m not cute enough. 
I’m not skinny enough.
My teeth aren’t white enough.” ... flooded my head.
.
And then I took a moment to celebrate the true wins.
.
I CAN smile again.
I DO have joy again.
I HAVE a lot to be excited about. .
Two years ago I couldn’t say those things honestly. .
So today... I celebrate the small wins, the big wins and the wins that are yet to come...
.
What can I celebrate with you?

#embraceadventure #calmthechaos #ctcwin #parenting #launchlife
  • A simple classic game. But so much opportunity for connection. 
What’s your favorite family game?
  • This is my date for Valentine’s day. 
At 13 I have to embrace every moment he would choose to have dinner with his mama. 
Every day might not be perfect but I choose to use moments like these to anchor me for when times get hard. 
How are you connecting today? 
#itstartswithconnection #raisingsuperkids #calmthechaos #autism #parenting
  • “Papa can you play with me?”
.
His response could have been ... Not right now...
I’m busy.

But instead ... he simply said ... Sure!
.
These two are like peas and carrots.
.
This is a little girl that loves her papa.
. 
This is a papa that loves his little girl. .
What appears to be a quick game of tic-tac-toe...
.
Is really just one of many examples of unconditional love.
. 
I get so much joy from watching their relationship grow and develop. 
5 minutes can make a huge difference. 
#itstartswithconnection #calmthechaos #raisingsuperkids #fatherdaughter
  • Today my son broke his glasses 👓
.
He wasn’t hit by a football🏈
.
He wasn’t being careless⁉️
.
He didn’t step on them on accident 🤦🏻‍♀️
.
No. He broke them because he was mad. 😡
.
He had a rough day at school (understatement)
.
They use a “seclusion room” when children are disregulated
.
Today my son could NOT calm on his own. .
He shared he went between screaming and throwing his glasses to try to get out...
😡
To crying on the floor thinking he’d never get out.
😭
This was the result. .
I could get mad that we have to get new glasses.
I could scold him for having a fit at school.
I could punish him for all the destruction.
.
Instead, I choose to connect with him.
. 
He’s been isolated enough and that didn’t end well.
.
Tonight we will connect and plan how to alter the results when he gets upset.
.
What choices could he make differently?
What could he say? 
How could he calm himself next time? 
#itstartswithconnection #calmthechaos #parenting #autism #raisingsuperkids

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