Loving Lucy

In my first post I made brief mention of the fact we have discovered that our Lucy has some special needs.  I've been going round and round in my head over whether I should share more about that here, primarily because I want to honor my daughter's dignity as much as possible, and there's just something about throwing information into cyberspace that makes me want to proceed with caution.  But part of my stated purpose for this blog is to share what I have been learning as a mother and to entirely avoid sharing how I am growing in my understanding of Lucy and her unique needs would leave out a significant portion of my learning process.

To give an overview of what we have discovered and how we have gone about getting help, I will tell you the the three areas of difficulty we have identified.

It was close to Lucy's 2nd birthday that with the help of our family physician we recognized that she wasn't meeting her milestones in language development.  After ruling out hearing loss, we were able to utilize services though our public school system to have testing done and receive weekly speech and language therapy in home. She was diagnosed with Mixed Expressive Receptive Language Disorder (MERLD) and we began to see great progress with the help of therapy. So I  would say that for the entire year that she was two, Darin and I were primarily focused on learning and addressing her language learning needs.

While we worked to get handle on Lucy's language needs, we came to notice some other areas of concern as she was approaching her 3rd birthday.  She seemed to have a constant need to be in motion... more than an average toddler, for example if we were in a public place with an escalator, she would want to ride it up and down for more than 45 minutes at a time and when we attempted to transition her away she became devastated.  She also trying to eat substances with intense flavors and smells such as coffee grounds, soap, black pepper, and strong mints. Rather than being repelled by these tastes she seemed to crave them and go to great lengths to try to get a hold of them.  We also noticed that she became overwhelmed and withdrawn when we were in settings with large crowds and lots of noise.  

A dear friend who had lots of exposure to kids with special needs, suggested that she could possibly have something called Sensory Processing Disorder (SPD), which is a neurological issue that causes people to receive sensory input with greater difficulty than most.  About four months after her 3rd birthday, we were able to have her evaluated at the University of Iowa Center for Disabilities and Development, where she was officially diagnosed with SPD.  The professionals that evaluated her recommended that she receive occupational therapy (OT) to help her learn how to cope.  A couple months later, Lucy began receiving OT and as well as continued speech-language therapy from  a wonderful local organization called Childserve.  I would say that for the entire year that Lucy was three, Darin and I focused most of our parenting energy on trying to understand Lucy's sensory needs and receiving education from her occupational therapist.

With about 9 months of weekly occupational therapy behind her, Lucy has made great strides, and her cravings for sensory input are no longer constant.  Darin and I have learned how to recognize when she is struggling with her SPD and now know strategies to help her cope when the sensory cravings are escalated.  

When Lucy approached the age of four, one more concern began to form for Darin and I.  We began to notice some subtle but real struggles that Lucy seemed to have when it came to social interactions with her peers.  It's kind of hard to articulate it, but it seems that she has a definite desire to form friendships when she is with kids her age, but often times those connections don't always seem to be within her reach.  A lot of times when she is playing with other children, she can't answer their questions or converse with them at their level.  Often the tone in her voice is off-putting and she has hard time keeping her hands to herself which can cause peers to inch away from her on the playground. We also became stumped at home when it came to giving her instructions, managing her behavior and helping her to regulate her emotions.

 Because of these struggles we felt that we needed some suggestions that the average parenting books couldn't provide, so a few months ago we found a children's therapist to advise us. We are very much  "in the throws" of dealing with these challenges at present, but one of the key concepts we're starting to grasp is that Darin and I need to directly coach Lucy and model for her how to interact with others.  Sometimes it involves stepping in when we hear her speaking to others in an off-putting tone and asking her to listen to us say the same thing in a more appropriate voice. It means a lot of repetitive, direct teaching when we're in the midst of social settings. It requires a lot of patience and a lot of perseverance.  

When it comes to the expectations we have for her behavior in our household, we are learning what expectations are realistic to have in the first place and we must frequently remind ourselves that the  goal when it comes to parenting is not to "show her who's the boss" or lord our authority over her but to lovingly provide the structure that she needs to thrive as a functioning member of our family. It can be an interesting balance with having Collin who is so close in age to Lucy, because some expectations that are reasonable for him may not be so reasonable for her. But with God's grace we are learning and making strides.  

This has been a long post, and if you have hung in there this long, let me say thank you!  I hope that sharing our story of learning how to understand and care for Lucy according to her needs might help you to have understanding and compassion for other families who have kids with special needs.  

For anyone who has a child with special needs or knows others who do, I'd like to wrap up by pointing you to a couple of encouraging resources I have found.  First, let me share a website called Chosen Families.  Here you will find links to online resources for several "hidden disabilities", as well as insightful articles and a blog with many contributors representing families with lots of different disabilities. You may notice their badge on the left column of this blog with their link. 

 Also, I wanted to share this Bible Study that has been written specifically for mothers of children with special needs:

I had the pleasure of meeting the author, Bev Roozeboom at a local homeschooling conference this past spring, and after chatting for a couple minutes, I purchased a copy of Unlocking the Treasure on the spot.  I have been working my way through this study by myself, but I can only imagine how encouraging it could be to do this with other moms with special needs kids.  

Well, this post has outlasted Collin's afternoon nap and both of my busy kids are needing some attention so I'd better be on my way! 

Thanks. : )

xoxo,