Finding Help

It has been on my heart lately to share a little about how the process of identifying Lucy's special needs has opened my and Darin's hearts more and more to seeking help (in the professional sense) for her (and us).

It has been humbling for me to realize that there are aspects of parenting our daughter that Darin and I are not able to handle without professional help.  The amount and type of help we have sought and received has come in many stages and varieties, and I am guessing that other types of help also will enter our world in the future. I shared in this post about our experiences with identifying Lucy's expressive-receptive language disorder and sensory processing disorder and how we found help for her through speech-language therapy and occupational therapy. After about a year of occupational therapy and approximately two-years of speech-language therapy, we were feeling really encouraged.  Lucy was making amazing language progress and many of the difficult sensory-seeking behaviors were minimized.

We were, however experiencing increased meltdowns that were triggered when Darin or I had to correct, redirect or discipline Lucy. If it were not for the presence of Lucy's other known issues, we might have chalked up these behavioral challenges to being a "phase" or consider her to be a "strong-willed child".  But understanding everything we already did caused us to dig a little deeper into Lucy's behaviors. "Conventional" wisdom in how to discipline children fell flat with her (i.e. timeouts, removing privileges, etc.).  She either seemed completely unaffected by these measures or would melt-down to the point that any teachable opportunity was lost.  Sometimes her emotional response to our discipline measures seemed unusual and puzzling, for example when I took a serious or stern tone with her, she would erupt in uncontrollable laughter.  When I would calmly attempt to remove her from an escalated situation, she would become panicky, yelling at me in protest and sometimes become physically aggressive towards me. Sometimes these meltdowns would last 45-minutes to an hour. Sometimes they would occur multiple times a day.  I found myself feeling hopeless and sometimes angry.  I was also at a loss as to how to give Collin the attention he deserved from me when so much of my energy was spent helping Lucy through these episodes that were beyond her (and my) control.  Too often when Lucy's meltdowns occurred, I just set Collin down in front of a DVD, feeling horribly guilty for resorting to that.  I told Darin that I believed that it was time to enlist the help of a child and family therapist.  This was the help that was the most difficult to seek out... I won't dive into it here, but this was the realization that hurt my "pride" the most.

I had to tackle this feeling of wounded pride head-on, because I knew it was a hindrance to getting what our family needed to keep moving forward.  All of a sudden I had a "flash-forward" in my mind to Lucy's early adulthood.  I wondered what the trajectory of our family's life would look like if we  started to get that help right now as opposed to what it would look like if we kept trudging along in isolation and frustration.  I feared that the visible anxieties, stress and sadness that Darin and I felt over these struggles would start to make it harder for Lucy to feel secure in her relationship with her mommy and daddy.  I feared that the progress we'd made since her infancy in developing a trusting parent-child bond would be disrupted. I also feared that I would become too negative towards her and she would pick up on it. I knew that getting professional help for these challenges wouldn't guarantee a smooth future, but I imagined us continuing on the path we'd been on WITHOUT help for the long haul.  I imagined Lucy as a young adult, perhaps feeling disconnected and distrustful of us.  I imagined myself having to tell her that when she was a little girl, we saw hints of these challenges brewing and considered getting help but refused to do so because of our pride.  Pardon me for saying this, but that's crap. For me, envisioning the possibility of having to admit that to my adult daughter sealed the deal.  I hope with all my heart that as a young adult, Lucy will feel close to us... that she will feel safe with me as her mother and might even be able to view me as a friend.  But, if that is not what unfolds in the future, I'd hate to look back upon her early childhood and have memories of myself clinging to my pride rather than humbling myself when the Holy Spirit had prompted me to let it go and get help.  And I am convinced that the "flash forward" moment I had was a gift from God.

Soon after that key moment, Darin and I got a referral from the agency where Lucy receives her speech and occupational therapies and began to meet regularly with a child and family therapist.  We ended up meeting with this gal for about 3 or 4 months and she helped us learn some simple ideas/strategies that we would have never thought of on our own.  Many of these strategies have made a difference in our ability to guide Lucy in her behavior.  Even though it wasn't practical or feasible to continue meeting regularly with her for the long term, I will look back on the time we spent with her as a turning point and springboard from which we began to make strides in learning to understand and approach Lucy's behavioral challenges.

More recently, we have decided to begin a modified "Applied Behavioral Analysis" (ABA) program in our home with a delightful gal whom we recently connected with.  Ruth is the wife of a pastor at a large local church who has parented a child (now age 18) with issues similar to Lucy's.  I began reading Ruth's blog which she launched several months ago, called Connecting One Piece at a Time and while perusing her site I read about the in-home ABA services she offers to families like ours.  This is the statement from Ruth that captured my attention the most:

"I have developed a passion for encouraging, helping and training children who have learning differences, along with their families. I love helping families normalize family life while living with disabilities."

Between that statement and the encouragement I received from her regular blog posts, I knew that it was worth our while to pursue her help.  So we met her and acquainted her with Lucy's specific needs and began the process of hiring her to come and work with Lucy (and our family) on a weekly basis.  We just had our first session with Ruth this past week and all I can say is that I am feeling grateful and hopeful about this addition to the array of help we have sought and received.

Lucy is a curious, helpful, compassionate, sharing, enthusiastic little girl all wrapped up in an adorable 35 lb package.  It breaks my heart that at times I have been so preoccupied with how to understand her needs and challenges and how to parent her that I have been hindered in enjoying her as the beautiful gift that she is.  But now, with the combination of help that we currently have in place for her I feel like I am being given back the gift of simply enjoying her as my daughter.  I praise God and acknowledge that it's His hand that has guided us through every step in this process.  It is so worth it to seek help. And I hope that somehow our story can encourage others who may need help but feel reluctant to seek it in their own parenting journey.

xoxo,

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,