Sharing Erin's Special Needs

I'm sharing about something that I haven't told most people. It's a sensitive subject in some ways, but I need to get it off my chest and let you all know these struggles so you can pray as you feel led.

Our 4 year old daughter, Erin, has a neurological problem called Sensory Processing Disorder (or the old term, Sensory Intergration Disfunction). It is often misdiagnosed as ADHD or Autism because of the symptoms (also the cause is unknown in all of these). Erin looks normal on the inside, but her brain's neurological pathways don't always connect like ours. This has caused apraxia, or lack of motor planning, resulting in problems with her speech and language development. She was diagnosed with apraxia in December 2012, then diagnosed with SPD in February 2014 after her teacher/therapists first expressed concern in November 2013 at our fall conference. Therapy, especially OT, has helped her progress in her speech as well as other areas she struggles with, although she will never be cured. She will learn to adapt and cope to function in life, but hopefully she will speak more normally someday. Right now, it's a steeper hill to climb for her than the average kid. 

     Super cute smile and dress, both took time to put on. :) "Thank you, Aunt Amy!"

For Erin, she struggles with different senses that most people don't even realize they have, like vestibular (http://en.m.wikipedia.org/wiki/Vestibular_system), and proprioceptive (http://en.m.wikipedia.org/wiki/Proprioception). She has overcome her fear of tilting her head backward and enjoys spinning and swinging; in fact, she craves them now. Sounds are often too loud, but recently too quiet. Erin thrives on routine and melts down easily when things don't go as planned or not her way. Holding her hand to cross the street is painful for her, but she craves deep pressure input, like big bear hugs. Clothing must be snug and comfortable for her to want to wear it. Dresses are also hard for her to wear, both because of material and because it's not fitted. Putting her in a dress is like trying to put a cat in a bathtub full of water. She needs to boss others around and be in control because she's not in control of herself. She is the most stubborn person I know and it's almost impossible to reason with her. She can't carry light things, like her backpack, because "it's too heavy", but she can lift a twin into the wagon no problem, or lug a heavy grocery bag into the house, no complaints. Bath time is another torture for her. Erin screams like she's being scalded when I pour any temperature of water on her head and hates shampoo on her hair. She's ok with having it combed or brushed, though. Weird things that seem to contradict each other is just another normal day in her world, and therefore in our home. And she requires a parent stay in her room until she falls asleep every night, and she doesn't always sleep well. 

It's crazy, stressful, waring, exhausting, mind boggling. It is a challenge that I'm not prepared the deal with everyday, and yet I must. I'm thankful that it's nothing more than this, that someday she may lead a mostly normal life. For now, Erin demands more than I can give, especially during the times when I'm taking care of her mischievous baby brothers, too. I love her and her curls, I nearly melt when she smiles, when she actually listens, responds, or obeys. I love her sweet snuggles that she needs so often, and her bright, brown eyes. I love hearing her sing along with the songs from Frozen, because it's something new to have her sing and verbalize in that way, even though it's more of approximation than actual words. Erin is so precious, yet can be such a burden to care for. I spoke with a dear friend recently whose daughter is a little younger than Erin but is smaller than the twins due to an unknown eating problem which requires the use of a feeding tube to her abdomen to get nourishment to her. I could tell she felt similarly to me in the care of a child with so many needs. "I'm tired of being her nurse. I just want to be her mom." Well said. I'm tired of being her speech therapist and occupational therapist and social worker. I just want to be her mom for a while...God had entrusted her to me for a plan that is greater than my understanding, so we continue on. I pray for patience, endurance, wisdom, contentment, rest, for change in myself. I pray that she would come to know Jesus as her Lord and Savior. I'm still weak and weary and worn out. Having nearly 2-year-old twin boys doesn't help either. ;) It's honestly hard to love a child when they behave like she does so much, disagreeing with everything and saying no, just because.  I'm still learning how to discern between defiance and disfunction. 

Here's a link to a website that gives more detailed information about SPD if you want to know more. 

http://spdfoundation.net/about-sensory-processing-disorder.html

We appreciate your prayers and compassion as we parent a child with SPD. May we "Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing." James 1:2-4 ESV May I be as our precious friend, Noé, who says "Thank you, Jesus", even when it doesn't seem like something to be thankful for.

(I'm trying not to complain; more inform, maybe even find other parents of kids with the same thing. I know others who are dealing with far more intense and severe things with their children, whether it be an unknown disability that causes significant physical and cognitive impairments or their child s battling cancer. It doesn't make Erin's stuff less challenging, it makes me thankful she's as high functioning as she is overall and that I'm not the only one who has atypical struggles with their children. I pray for these precious families and share in their frustrations and have compassion for them, wishing there was more I could do. I'm just sharing our journey, too. Thank you for understanding.)