Sensory tornado

by Monica jandernoa
(Grand Rapids , MI)

Hi. My name is monica. I have spd. I didn't realize I had spd until I gave birth to a beautiful boy w spd. In my quest to help him. I found out where he got it from. My son and I both have good days and bad days. It s hard. I think my spd was more manageable before I became a mother because I had more control over my environment. But I still can see my spd , looking back , before I was a mother and diagnosed.


But I thought the symptoms were character flaws. I feel emotional often when my spd symptoms are heightened or if my sons spd symptoms are heightened. Because it s so hard and most people don't understand what we go through. It s lonely. And the fall is always so hard for some reason. Sometimes I feel terrible because I wonder if my spd get s in the way sometimes with my son and being able to soothe him. I think because I was diagnosed as an adult that I have a lot of feelings about myself that are wrong. I don't always think I m weird or bad. But sometimes I feel bad or like something is wrong with me when I can't manage during a situation that people without spd can. Or when I explain my spd and people act like it s b.s. Still working through this. Still working on loving me and understanding myself and my son even when people I try to educate aren't positive or open. Still trying to correct the years of negative self talk because of my own thoughts and other people s words .

I m working on thinking Instead that my brain is different. My sons brain is different. I m not bad or spoiled or inflexible. He is not bad or spoiled or inflexible. My husband and I aren't bad parents. I ve started to more understand my spd. ( and my Sons) And why I avoid certain situations.

I ve started occupational therapy. But I still struggle at times ( especially during the fall ; augh! don't know why the fall is such a nightmare .for myself and my son ! We live in Michigan. You d think the crazy winters would be more of a problem . Nope ) with coping and keeping my symptoms manageable. I ve become really good over the years at masking them. At pretending that I am sick because of sensory shut down / or fatigue . or i just plain hide or when I really freak out i tell close family and friends I NEED QUIET TiME. ( meaning no
More language processing please )

I Especially hate my auditory sensitivities. I also struggle at times with the judgement I receive when I can't be there for a family get together.s because of sensory hangover ( words I got from an spd blog that described how u feel after too many social activities ) I find my spd to still be very unpredictable . Probably because my son and I can trigger each other. Who knows.

I also feel weary at times with judgement towards my sweet boy. Who can have meltdowns because of overstimulation. He has overcome so much. And I am truly grateful. There was a time that going out in public. Or attending a social situation was either impossible or a total nightmare. I have family tree therapies in Grand Rapids to thank for all of his progress. But as a mother. You know it cuts like a knife when someone misunderstands your child. And maybe it does for me more because it happened to me as a child. But I think anyone can relate to the hurt and frustration from being misunderstood and judged .

So anyway this is my story. Still a chaos. But I m learning. And I have my little spd pumpkin to thank. Because if it wasn't for him. I d still be a " weirdo" instead of an spd kid just like him who deserves love. Acceptance. Respect and is more than spd. Thank you for letting me share my story. It s been a crazy ride

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Sep 04, 2016
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Ditto
by: Anonymous

Wow! Like others have commented, your story is my story too. Except I have a daughter. :)Thanks for sharing your story. There is comfort just in knowing we are not the only ones.

Jul 30, 2016
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where in MI?
by: maria

I suspect my son may have it and in turn, myself because I got diagnosed with ADHD as an adult and am begining to think it was a misdiagnosis or maybe i DO have both. I don't know what to do and sometimes my son overwhelms me and I feel like a bad parent. We are in Livonia, MI.

Apr 29, 2016
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Thank you
by: Anonymous

Thank you so much for sharing your story. I am sitting here bawling because I just realized my story is your story. My 2 year old was diagnosed with ASD and also has sensory issues. Seeing his issues made me realize mine. Stay strong mom.

Feb 01, 2016
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Mi Vida Loca (My Crazy Life)
by: Sofia

I'm 62 years old and just found a list that fits so many of my issues... At first I was scared and then angry no doctor ever thought to ask me any of these questions to try to nail down what was happening. I lost my eldest daughter to suicide and now realize she was misunderstood by most of us. I'm grateful for the information and all of you that have helped me see through your stories. 😘

Dec 02, 2015
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Wow
by: Anonymous

Literally exactly how my life is and has been and honestly never realized it until reading this and since having my son I've realized there is more going on with me than just the character flaws that I've always tried to hide .. Thank you for sharing , I literally feel like I could've just wrote your same story

Oct 29, 2015
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Thank You
by: Anonymous

Your story is my story. I'm glad to know there are others out there.

Sep 30, 2015
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Be patient and self-forgiving
by: Christine Di

I am so thankful you had the courage to write and tell your story. Your pain and suffering seems unbearable and at times I imagine it feels that way. I want to encourage you to be patient and self-forgiving. Being a parent is no easy task.

Being a parent with special needs is categorically more difficult. And yes, I agree it's given you an opportunity to understand your own SPD challenges.

I have a daughter with a developmental disability who is 36 years old. I am 57. I currently am trying to understand how SPD has contributed to our life circumstances. You are brave and courageous. You are a wonderful mother for speaking your truth.

You have every right to decide what is best for you and your son. Please be patient and kind with yourself. We all do the best we can. I would encourage you to continue seeking supportive, understanding people that will enhance your life.

And you may have to dig deep to forgive those around you that you wish would act differently towards you and your son. Don't do it alone. I know how hard this is. I would also encourage you to trust your own gut and while professionals can add a lot of knowledge; in the end you are the final expert on what is best for you and your son. Many blessings. Stay strong.

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