Monday, August 22, 2011

4 years living with Sensory Processing Disorder

If you haven't read PART 1 of our sweet girl's story, would you please do so. Reading it will help you to better understand part 2 ;)

I have shared all of this detail because I have talked to so many families that are currently struggling with very similar situations with their babes.  Our greatest prayer in sharing all of this is that our sweet girl’s life will help other families find the help they need for their children.

When did we realize it was more than just being newly home…more than attachment, bonding, grieving? I would have to say looking back; our first glimpse was in China when we were leaving her province in Kunming.  We were in the airport…a loud, very crowded, smoky, dark airport. I tried to give her a little Benadryl for the flight (yes, I’m one of ‘those’ mom’s) and she spiraled into a massive screaming meltdown. A meltdown that lasted for 1 hour…a meltdown that caused a huge crowd of people to surround us…Chinese women trying to take her from me…Chinese men shaking their heads scolding us, scolding her, blowing cigarette smoke…it was unreal. We were texting home “pray…please pray…we don’t know what’s wrong but it’s bad.” Thankfully she fell asleep as we boarded the plane and slept the whole way to Guangzhou.  We saw this same type of meltdown right after we came home. It was our son’s birthday and we took him to the bowling alley to celebrate. Massive meltdown #2! 

Going to Costco or Target would cause HUGE meltdowns…as soon as we would leave a party or play date, we were guaranteed a meltdown…Home 3 months…we knew something wasn’t right. We sought help from a local International Adoption Doctor who said he felt confident she was bonding and attaching in a healthy way. He noted that she had pretty significant hypotonia (lack of muscle tone) and SPD but he felt it would get better with time sooooo, we tried waiting it out.  I did daily exercises with her to try and help her gain strength and muscle tone. Home 6 months, no better…Home 9 months…she was not getting better, she was getting worse! We were guaranteed middle of the night screaming for a minimum of 45 minutes and afternoon meltdowns, too. We were at a loss. I kept thinking, ‘This is not my first baby. She is our 5th for goodness sake…why can’t I help her…what am I doing wrong…why is this still so hard…is it always going to be like this…how can we help her’.

In the darkest time, I would cry out to the Lord as my baby girl thrashed in my arms. “Lord, I love this sweet one so much…please show us how to help her…please help me not to detach…please help her not to detach from us.” The constant rejection for this very, very sleep deprived mama was so hard…everything about me was weary.  Thankfully joy comes in the morning and when the sun would rise, we would start afresh.

We trekked back to the IA doctor at 1 year home. He gave us the same diagnosis but this time he encouraged us to have her evaluated by a physical and occupational therapist.  We did this immediately!  Both the ot and pt agreed…hypotonia, spd, & major safety awareness issues…there was also concern that something deeper neurologically was going on but only time in therapy would uncover that. So, we immediately began therapy 2 times a week. I was on the heels of the therapists every session…asking questions, begging them to show me what to do at home.  All the while, our hopes of finally having found help for our girl were being dashed. She was getting worse not better.  Therapy two times a week was just enough to shake up her neurological system. During all of this, we took her to see a neurologist whose evaluation was a joke! He told me to have her walk to him…he watched her walked, checked her reflexes, and said there was nothing wrong; she was perfectly healthy.  I still wonder if he saw the steam coming out of my ears!!

We were going backwards…farther from where we started.  I was constantly searching for answers…everything came back as SPD and treatment was OT and PT…but that wasn’t working!!!!

Then the Lord showed us His plan for help…it was through a Christian neurodevelopmentalist. Yeah, I had never heard of one before eitherJ.  After talking with the ND, Marilee, we took her in for an extensive assessment.  We chose not to tell Marilee all of sweet girl’s quirks because we wanted to see what the ND would see.  As we watched Marilee work with our girl, it was all this mama could do not to burst into tears…she could see our girl…she could see her difficulties…and the Lord was going to use her to help us help our girl.  She confirmed the previous hypotonia and spd diagnosis we had received.  Marilee developed a ‘program’ for us to do at home with her. The program consisted of many types of exercises that would help retrain sweet girl’s brain and neurological system to communicate properly.

We immediately began her daily ‘program’ and watched as her little body fought this daily work.  The first 2 weeks were really difficult…her little system was definitely fighting the work we were trying to do but then….after the 2 week mark some amazing things started to happen…her meltdowns were not lasting as long…we were learning to help teach her to regulate out of of her meltdowns…she was starting to sleep a little better.  ‘Could this really be happening…after almost 2 years, could she actually be getting better?’ We continued with her program for a year…she continued to improve greatly. Some days she liked doing her therapy and other days she didn’t but all we knew is that the Lord was healing her through these exercises.

Fast forward…she continued to improve so we were ultimately able to take her off of program. Her meltdowns had become a thing of the past…she was sleeping well (still waking up once to climb into our bed but no crying).  We’ve had times of regression but never back to the extreme that those first 2 years were. We’ve learned to understand her triggers…she’s learned to self regulate and communicate better.

We have recently experienced a huge regression with her and we are beginning her program back up with the hopes that it will help.  This last year has brought some huge changes to our household and I think her little system is a tad overwhelmed with her very loud, very busy new brother and the attention that her new baby sister requires.  

We are confident that God placed our miracle girl perfectly in our family. We are confident that He alone has equipped us to raise this precious girl.  We will continue to trust His perfect plan and guidance in raising our sweet treasure.  Many days are very hard and we aren’t sure what to do to help her but the Lord promises us that HIS strength is OUR strength so we will continue to be filled with His strength to help our girlie.
To our sweet girl, 
Baby...we love you so much and have no doubt that you were created to be ours. We have no doubt that the Lord perfectly placed you in our family to be our precious daughter.  You are wonderfully and fearfully made by the Creator of the are beautifully made in His image. He is using your life in mighty, mighty ways and we are so honored to be your mommy and daddy. You are the joy of our lives. The journey to bring you home was incredible and it changed our lives so deeply. You have taught us to enjoy and cherish every single moment. You have taught us to fight like are so strong. God has HUGE, MIGHTY plans for your life. We love you sweet babe!!!
A few tools:
If you feel you may have a child with SPD tendencies, here are a few resources...
~Our neurodevelopmentalist: Help with Learning and ICAN 
~DreamCatcher Weighted Blankets (be watching my blog for an incredible GIVEAWAY from DreamCatcher's)
~The Out of Sync Child by Carol Kranowitz (an absolute MUST READ if you have ANY inkling that your sweet child might have some sensory issues...what an eye opener this book is...I honestly feel this should be a must read for ALL adoptive families!!)
~Karin Purvis' website and her book The Connected Child


Hezra said...

thank you! This was amazing! So helpful!

AnotherPreciousJewel said...

Thank you so much for sharing this. I know the courage that takes. Our family has been so blessed by your courage to share. My sweet little one has been seeing Marilee for a year now, and the improvements have been so great that I have been contimplating taking her off program. I think we will stick with it for a while longer. It is difficult to stick with the program sometimes, but these exercises Marilee prescribes really do help as well as the supplements from ChemBalance, way beyond coincidence. Christina has far fewer meltdowns now, and when she does have them, she is better at expressing her needs. She will come up and tell me that her cousins' noise is getting to her instead of just screaming at them or crying uncontrollably. Sometimes she needs an actual break, and other times all she needs is some earplugs. I am so grateful to see her progress and to watch her confidence grow. We owe it in part to your courage to share. Thanks again for the huge blessing you have been to our family, and particularly my little effervescent wonder.

Carla said...

Thankyou for posting this. It's a difficult to understand issue..especially for people who are watching from the outside. I have little ones who are all effected in different ways by out of whack sensory issues. When my first daughter was little, as a first time mom, I was totally overhwelmed with her huge meltdowns that lasted ridiculously long over things like hair washing and baths. I just thought I was a horrible mom...a few kids and other random quirks later we decided we needed to get this figured out. I had no idea that if the sensory issues are genetic (which my kids are looking back through the family) they can come with a whole pot of other linked issues as well. We've got the alphabet soup with ADD, ADHD, SPD, Tourettes,Dyslexia and a first cousin with ASD. They are all so linked and so often overlap it's tricky to figure out sometimes! And it's often isolating as a parent. Keeps life interesting. I have noticed too that major changes (or sometimes even minor ones) can set things off. Thanks for giving SPD a voice.

Jewels of My Heart said...

Praying for your precious family. It's so hard to see our children suffer like this but I am thankful that the Lord has given you the tools to see her through... praying for healing.
Love you friend,

Anonymous said...

Love reading your serious posts... always full of good insight but positively oozing with love for your children and God's plan in bringing them to you. You are one terrific mama, and I'm thankful that God gave you the gift of precious "C"! She is a treasure!

Michele said...

Thank you so much for your amazing posts. You describe my 6 year old to a T. She was in constant fight or flight mode for the first 2 1/2 years. She was getting intensive services, but it was slow going. I couldn't help but cry when you wrote about praying that you wouldn't detach from her and vice versa. I prayed the same. Many days were soooo hard!! She is now 6 and doing fabulous!! We have our set backs, but she is an incredibly brave girl and a blessing to our family! It is such a misunderstood dx for so many of our kids. Thanks for sharing.

Emily Preus said...

Oh Stacy, you are so amazing! I simply cannot read one of your posts without balling my eyes out.

Jolene said...

~Great post~ We are challenged in our family with RAD, Anxiety Disorder, and PTSD. While the challenges are different they are still challenges and I appreciate you working to educate mothers who are looking for answers for their struggling children.

Jaclyn M said...

Thank You for sharing... my sweet daughter (bio) has almost exactly what you are describing.... Currently she is diagnosed with Aspergers, OCD, Social Anxiety Disorder and ADHD. We also experienced a HUGE regression this year. We lost almost 3 years worth of work almost instantly. We moved and that was all it took :( Praying that things will improve for your sweet one again. We were in the process of trying to adopt when her meltdowns became too much. She can be violent when she gets in this mode, and we felt it best to not bring another child in just yet. I feel it might over load this exhausted mom. I have been through all of it... the screaming for hours at night.... my sweet daughter used to only sleep about 2 hours a night... starting at just 5 months old :(

Shonni said...

I was up at 5 this morning thinking and praying to the LORD about a few of our children that I am sure have SPD issues, but we haven’t found the help that we need yet. Thank you for writing this. I am so grateful that you shared.

Calley said...

I just found your blog through a friend. What an amazing family and testimony! Thanks for sharing!Our family is at the end of an 18 month wait to bring home our little girl from Peru. We are waiting on news. I would love to email you with some questions, but I cannot find a contact on your sit...maybe I missed it. My email is My blog is
Thanks so much!