Friday, July 29, 2011

Sensory Processing Disorder (SPD) & meltdowns

Sensory Processing Disorder (SPD) is a commonly un-diagnosed neurological disorder. A lot of children that have been institutionalized suffer from some form of SPD BUT it can affect biological children, too. It took us TWO years of major daily meltdowns until we figured out what was going on with our sweet girl (adopted from China at 14 months old).

She has been regressing and we are full swing into daily meltdowns again...below are my thoughts from her latest meltdown...thoughts that I felt very strongly the Lord wanted me to journal because there is someone who reads my blog and their child...their family is in the dark days of SPD meltdowns but don't know what it is....please be sensitive to our family's privacy and not gossip about our girl (sad I have to say this but it's happened)...I am sharing this because I have no doubt the Lord wants to use this to help other child and their families.  SPD can be a very difficult, scary, painful, dark place to live. We are very thankful for EVERY part of our miracle girl...including her SPD...the Lord is already using her little life mightily!!!
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She starts crying…lots of stiff, foot stomping crying…crying ‘mommy, mommy, hold me’…it’s the beginning of a meltdown.  Of course, I immediately bend down and scoop up my precious crying babe…but what’s different about this cry? The cause? It’s sensory processing disorder…it’s a cry and pain that can not be comforted…a cry that can’t be stopped…a cry that the more you try to comfort and soothe, the more intense and raging it becomes… a cry that is actually more like a blood curdling scream…a continual scream that will only stop when her body has fully let it all out…spd is holding her hostage in her own body…

I pick up my crying babe just for her to start screaming ‘don’t touch me, put me down’…I put her down…she changes her screams of ‘put me down’ to ‘I want to hold you…hold me, hold me’ and this goes on for at least 40 minutes sometimes much longer.  We sit in a chair as she screams and kicks…fighting me, fighting herself the entire time…her body is extremely tight, rigid, stiff…she clings to me for dear life and pushes me away at the same time. We try walking around but it's extremely difficult to carry her because of the intense kicking.  The love that a mama normal pours out for her hurt child…the singing, the caressing, the holding, the kissing, the whispers, the beautiful loving actually causes my girl to spiral even deeper.

She kicks violently, she slaps my legs until they are red, she frantically rubs her feet together until they are raw and almost bleeding…I try to protect her, I try to hold her feet…separate her feet…anything to keep her from rubbing them together…but her adrenaline is raging...the child that has hypotonia is just about stronger than her mama…the more I try to stop her, the more persistent and focused she becomes in rubbing her feet…the more I ask her to stop kicking and flopping her legs all over, the more she flails…the more she screams ‘don’t touch me, hold me, put me down, I want you’…

This will only end when her body…her brain and neurological system will let her rest…when her disorganized little body can calm long enough to get her grounded…

The screaming, kicking, feet rubbing, stomping, pushing, slapping is starting to fade…her body is exhausted and will finally let her rest…she collapses on my shoulder and her spd cry turns into an exhausted weep…it’s over…the meltdown is done.  She will weep for a few moments, sit up, and carry on like nothing ever happened. I can still see the exhaustion in her eyes 
but for now, her body is at peace and communicating properly…she hums and skips around as if all is well.  
But this mama doesn’t forget…this mama grieves for the deep, internal wounds my baby girl carries...for her disorganized little insides…this mama grieves that no matter how much I try to comfort her during these times, the more pain it causes her...

Lord, continue to heal our miracle girl…the precious babe you fashioned and created to be our girl…the precious babe you had us fight for…the sweet girl that we are still fighting for.  Equip us to help her heal…show us everything she needs and how we can help her. ~amen
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Sensory processing disorder or SPD is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within the own body
*my next post will discuss the medical aspect of SPD and how we help our sweet girl heal! See PART 2 HERE*

18 comments:

Susanz Place said...

the gift right now is you are not fighting this as if it is disobedience / naughty behavior our faithful Jesus gave you the wisdom to know better and to that i say thank you Lord.

Shonni said...

Thank you for sharing this...we have two that really struggle with this!!! It is so hard to help them when they can’t make sense of what is wrong or how to stop it.

Hezra said...

I am so grateful for her that she has you. A sweet, loving mommy who cares so deeply and loves so strongly. Sometimes our love hurts. Us both(mom and kid) I have an ADHD ,spd kid. He gets viewed as mostly a bad hyper kid. I have a bio kid who is sweet as can be but has certain sensory issues with motion and when they hit.... they hit hard. It hurts to see them hurt and to feel so helpless. It would be so great if more people understood it. And could show love and compassion for the children IN it.

Angie said...

thank you for sharing this from the heart. although not easy, you are right, you never know who it may help! praying for your girl! angie
www.livinglifewithaprincess.blogspot.com

Dawn said...

We have certainly been there... it is very hard on her and you... just wanted to mention the Out of sync child book for sensory disorder... I have also used martha Welches book holding time I think it is called... blessings

Dawn

GrumpyJaxMomOf3 said...

Thank You for sharing! Does this come in varying degrees? I have a daughter who has something similar.... she has been diagnosed with PDD, Aspergers, OCD, Social Anxiety Disorder, and she struggles with feeling "out of control" Thank You for bringing this to light. I will have to look into it.

Jolene said...

Oh that sweet baby! I've been through something extremely similar with our *Sunshine* (age 6), although his is due to PTSD, RAD and Anxiety. Oddly enough, we get 6 awesome months with him May-November and 6 really ROUGH months November back to May...as a trauma mama I have sat many many hours holding a screaming, kicking, scared and hurting child.

What a blessing you are to your sweet girl and what a blessing she is to teach a new way to look at life. Each a blessing unto the other in so many many ways. Lord place your hand of mercy and grace upon this princess!

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Anonymous said...

WOW thanks for sharing!! I could have written this about our soon to be 4 yr old that has been home since she was 7 months....I will look into this spd stuff :)

thanks!

Darci

AnotherPreciousJewel said...

It took courage to share this, Stacy. I know how hard it is to debate saying something to help another family you see in distress versus a mother's instinct to protect her child's privacy. I'm so glad you shared. I would love for more people to understand this disorder and for more children to be helped out of that awareness. Thank you for sharing what you know with my family. Christina has been steadily improving and we are still seeing Marilee. You are such a blessing!

Stephanie said...

I'm glad you followed God's prompting to post this. I can see from your comments that it has already been helpful to so many. Would you be willing to let us feature this post on "We Are Grafted In" (www.wearegraftedin.com)? If so, we would just need a bio and a picture to use when it is reposted. Let me know!
Stephanie (smurphy 28 AT juno . com)
co-administrator of WAGI

Kelly said...

What a powerful post! I have never heard of this before and am so thankful that you posted on it...I am sure there are other families dealing with this issue.

Jewels of My Heart said...

Praying for your precious baby and for your whole family. Jesus has blessed us with a healing that took over 4 years and a miracle healing too.... praying for Healing....
LOVE YOU,
Daleea

Julia said...

hi! just came across your blog. Our little guy is in OT for sensory issues, but I struggle so much with wondering when his meltdowns are "normal, all kids do this" and definite SPD. We had a particularly long meltdown tonight. His seem to be triggered by sickness. thanks for sharing, i will check in on your blog again...

Anonymous said...

Hi,I know this story all to well. Our daughter WAS the same. She has been getting chiropractic adjustments for the past year and a half. Meltdowns have gone from daily to once a week if that. We have done nothing different with her but taken her to a chiropractor. It has made all the difference in our world and hers. Might work for your SPD daughter too.

Anonymous said...

Thank you for your post. I have an SPD kid and his meltdowns make me feel like crying.

Anonymous said...

You will never know how much your story and encouragement meant...during a time where my husband and I were in deep grief for the pain our child was experiencing with SPD. I'm so thankful you shared. We so needed to hear we were not alone. Thank you.

Yvonne Bohaker said...

Thank you for sharing your story. I am moved to tears as i feel like someone out there understand the constant battle with SPD. And the agonizing grief watching thus happen to your child over and over again! Our daughter was just diagnosed and will be 4 in a few weeks. Sometimes these meltdowns happen 5+ times a day for often well over an hour.