The new kind of play....

On January 11, 2013 Hannah attended her Occupational Therapy Evaluation. The Occupational Therapist, named Sharon, worked with Hannah in a room filled with fun activities to evaluate her physical abilities. When we walked into the room, Hannah was introduced to a swing that hung down from the ceiling. The swing was a small square platform so she could safely stand up and swing. She was rather nervous but cautiously stepped onto the swing, swung for about a minute and then stepped off. Hannah then was shown a task of burying small ducks into a huge tub full of dried beans and asked to dig them out with her feet. The therapist showed her, by example, then allowed Hannah to dig to her heart's desire, with her feet, while she asked us some questions about Hannah. Hannah; however, did not enjoy the beans being on her feet too much and quickly changed the activity to digging for the ducks with her hands and funneling them through a funnel. We discussed the fact that she does not enjoy getting her feet dirty and how particular she is about things such as her jacket being zipped all the way to the top, her lack of enjoyment for wearing sleeves, and if she wears sleeves, they have to be put into the jacket in a particular manner so she doesn't panic. We also discussed how she hates to sleep with Pajama's on and has since she was a toddler. We talked about how Hannah seems to have the inability to sit still on her own. That can be rather exhausting. Except when watching a movie or playing a game on my tablet or her reader, Hannah is constantly fidgeting, flipping, rolling, jumping, and in our faces, she struggles with being gentle, and is usually in need of a space where she can run back and forth, spin in circles on the floor, or act out movies she has seen. Most of these actions are not seen as Hannah misbehaving but trying to fulfill a sensory need, we just could not figure out what sensory need that was.


Hannah was asked by her Occupational Therapist to change games and transition to drawing on a chalkboard in the room; however, Hannah did not do well with the transition, and needed some encouragement for the change by putting away the ducks and beans to change her focus to the chalkboard. The Therapist cleaned off the chalkboard so Hannah could draw on it; however, Hannah could not concentrate on the requested task until the ENTIRE chalkboard had been cleaned off. We discussed that Hannah struggles with some Obsessive Compulsive Tendencies that cause panic if they are not to the standard which she feels comfortable. After the board had been cleaned off, to Hannah's preference, she was able to complete the task of drawing. After that, she was able to blow some bubbles, play with some blocks, and she even decided to get on the swing again; however, she did not stand on the swing, instead, she laid down on the swing and giggled as she was swung back and forth. The Therapist decided to see how Hannah would react if she lightly pushed the swing so it would spin a little bit instead of simply doing back and forth movement. Hannah did not reach very well. She yelled for the swing to stop and so we stopped it.


During the session, the Occupational Therapist, discussed with John and I that Hannah seems to really struggle with knowing where her body is located. We talked about how she loves boldly flavored and very spicy foods. Sharon told us that those bold flavors and spices in her mouth tell her where the food is located in her mouth. For Hannah, she does things in particular ways so she knows where her body is located and how it is postured. She has issues with something she called a Vestibular Sense. I had been reading the book "Out of Synch Child" by Karol Stock Kranowitz M.A. to try and make sense of sensory issues; and while it is an amazing book, I expressed to Sharon that I really felt more overwhelmed by the information that I was reading because I didn't know exactly which portions affected Hannah--and that is where I wanted to start and then expand into the other areas. She understood. For those of us who are unfamiliar with the word Vestibular, www.scholarpedia.org, describes the Vestibular System:






The vestibular system detects motion of the head in space and in turn generates reflexes that are crucial for our daily activities, such as stabilizing the visual axis (gaze) and maintaining head and body posture. In addition, the vestibular system provides us with our subjective sense of movement and orientation in space. The vestibular sensory organs are located in the petrous part of the temporal bone in close proximity to the cochlea, the auditory sensory organ. Although the vestibular system was recognized as a separate entity from the auditory portion of the inner ear only in the middle of the 19th century, it is phylogenetically the oldest part of the inner ear. The vestibular system is comprised of two types of sensors: the two otolith organs (the saccule and utricle), which sense linear acceleration (i.e., gravity and translational movements), and the three semicircular canals, which sense angular acceleration in three planes. The receptor cells of the otoliths and semicircular canals send signals through the vestibular nerve fibers to the neural structures that control eye movements, posture, and balance (Figure 1).


In contrast to the senses of vision and audition which can easily be understood by simply shutting our eyes or plugging our ears, the significance of vestibular function in our daily lives is more difficult to appreciate. When the system is functioning normally, we are usually unaware of a distinct sensation arising from vestibular activity since it is integrated with visual, proprioceptive and other sensory information such that combined experience leads to a sense of motion.






We discussed things such as tight fitting clothing that might help her know where her body is, deep pressure squeezing which might help relax her and relieve anxiety, weighted vests, and backpacks with books, not too heavy, but heavy enough to be therapeutic (certain amounts for different weights in children), monitoring to see what physical activities cause her to be hyper and which ones help relax her. Sharon also shared with us that Hannah's movements, can cause deep pressure on her joints, can release serotonin and help her to relax, and, as a result, cause self therapy in a way. We discussed that a lot of Hannah's behaviors (not all...she is definitely mischievous from time to time by choice!) but much of what we are seeing is not a behavioral choice and needs therapeutic attention. We discussed some goals, such as, helping Hannah to regulate and control her body movements so she can participate in activities and public settings more appropriately. We discussed helping Hannah learn coping skills so when things seem to be too much, she has a way to handle them and calm down appropriately. We talked about how Hannah doesn't transition very well at all and how these things are going to cause her difficulty in the classroom; therefore, we have the big goal of getting Hannah ready for school. I felt that Hannah might struggle in school due to some things I observed as social skill issues; however, I had no idea certain things like the ones we discussed and observed in her session would hinder her in the classroom. I could see that more clearly as we discussed it; however, I have to admit, I was kind of shocked. We explained to her how things operate in our home with Hannah and she complimented us on how we have worked with her so far. We explained that Television is limited to no more than 2 hours a day, if she watches that, and how things like games on tablets and her reader are reserved for trips to the grocery store or when we really need her to stay in one spot. We talked about how when Hannah feels anxious we try to find a way to help her cope. It was nice to hear her tell us we were doing a good job. I think every parent needs to hear that.


They recommend that Hannah participate in Occupational Therapy once a week to help achieve these goals. As the session came to a close and I drove away from the facility, the first things that came to my mind were my failings. I thought about how I just didn't get it. We had talked about things during Hannah's infancy that might have signaled these issues, and it shed some light on early issues we dealt with; however, all I could think about was how I didn't get it. I remember thinking, we have been dealing with this all along and now there are only 7 months until she starts kindergarten...is there enough time to get her ready? Would it have made a difference if I caught it earlier? All the moments I possibly incorrectly disciplined her quickly flooded my mind. Did those moments harm her? The answers to these questions: yes, it would have made a huge difference if we knew earlier and I don't know if 7 months is enough time, and yes, there is a 99.9 percent chance....let me change that.....there is a 100 percent chance that I have disciplined Hannah incorrectly about a lot of things, but what I know more than those things that flood my mind, is this: GRACE. It is mentioned 170 times in the Bible. 2 Corinthians 12:9 states words that God said to Paul, "my grace is sufficient for you..." My encouragement that day was, "Brittany, my grace is sufficient for you...Brittany, my grace is sufficient for your parenting, your work, your marriage, your ministry...my grace is sufficient...I don't just fill in the gaps, I AM SUFFICIENT FOR EVERYTHING."


I am thankful for grace. I have no idea what I am doing besides the best I can and even that is not enough but that is okay because of GRACE. I don't have it all together but what I do have is Jesus and His grace is sufficient for my needs. ALL OF THEM. There is too much grace to be ashamed....there is too much grace to be afraid...and in my heart, though my body might not feel it and my mind might not think it, all the time, is a "peace that surpasses all understanding" (Philippians 4:7). I want to close with a quote from The Hobbit, the movie, as Tolkien's work are  some of my favorite stories and recently the Hobbit came out which I find appropriate for most situations for the season we are in as a family:


"Gandalf: You'll have a tale or two to tell when you come back.
Bilbo Baggins: You can promise that I will come back?
Gandalf: No. And if you do, you will not be the same."

"There are four pictures on this page..."

Hannah recently had her Language/Speech Assessment on January 9, 2013 where Hannah met her speech therapist, who she loved, and I had the privilege of sitting in on the session and I observed Hannah as her language skills were evaluated.  Two areas were evaluated, how much language she is able to understand, and how well she is able to communicate.  We were unable to complete the evaluation in one session as Hannah got frustrated with certain questions she didn't understand and decided to give up participation.  Her attention and behavior were rewarded with adding pieces to multiple Mr. Potato Heads, which she enjoyed, however, as the questions got more complex, Mr. Potato Head was not enough of a reward to desire to participate any longer.  Hannah would then slouch in her chair and respond, "I can't".

Hannah answered questions about pictures on pages.  There were stories that went along with the pictures, for example, Ms. Minda, her therapist, would say something like, "There are four pictures on this page, a bike, a book, a crayon, and a flower.  Amber fell off of one of these and hurt her knee.  Which toy was Amber playing with when she hurt her knee?"  Hannah successfully pointed to the bike and got it right.   Hannah struggled with instructions to find the child with the shortest pair of pants, while she looked at a photo of three children standing with different lengths of pants.  Hannah also struggled with picking out a kitten "that was not black" on a page with pictures of kittens that were different colors.  Instead, she pointed to a black kitten.  The area where Hannah got the most frustrated was the exercise which required her to pick, out of four pictures on the page, which object was different from all of the rest.  She would stare at the picture, think for a while, and then slouch in her chair and say, "I can't".  Minda asked me if she was tired or frustrated, and I could tell Hannah was frustrated with the situation by her body language, so I told Minda that Hannah was frustrated.  It was about that time we had been in there around an hour and we decided to stop and pick up again the next week on January 14, 2013.  John took her to that appointment and reported that she did wonderfully.  Based upon her scores it was determined that Hannah would definitely benefit from participating in Speech Therapy.   Hannah was a little low on reception, we need to do a hearing test to rule out any possibility of hearing issues, she was a baby who had a lot of inner ear infections, and there is a chance there could have been some damage as a result. Hannah also scored a little low in her ability communicate to others as well.  Hannah, rather than using full sentences as her responses to questions, spoke in one word responses.  It was recommended that Hannah receive Speech Therapy weekly.   

It is hard to think about your child needing some extra help in different areas.  I can't help but wonder how she will feel about the conversations we will have when she is older about the assistance she needed in her speech development, while there is nothing to be ashamed of, people don't always feel that way, society doesn't always communicate that, and I make it a prayer that Hannah is never upset that she needed some help, but instead sees the blessing of the results. I also pray for positive results, that she continues to develop in her thoughts and words.  When I think about the anxiety of making sure we get the appointments she needs, helping her succeed any way we can, thinking about the monetary toll of attending speech therapy, copays and allowed number of visits, those things begin to float to the back of my mind when I think about the conversation portion in general.   The thought that down the road I could hear Hannah clearly communicate what is on her mind and in her heart excites me.  I won't always agree with what comes out of her mouth and I will even have to discipline her for some of it I am sure; however, I want to really hear Hannah.  I want to really hear what she has to say.  I believe all of this will be documented in my "Hannah's Superhero Handbook" where,one day, we will look back and remember how brave and insightful Hannah is,  as well as how capable.

Hello Doctor, my name is Brittany, this is my husband John, and this is Hannah...

On November 2nd, Hannah was seen at the Cincinnati Children's Hospital.  We originally asked that Hannah be seen for possible Aspberger's Syndrome.  We felt that she was displaying behaviors that were atypical for her age.   They weren't any obvious behaviors, and in fact, many times they could be categorized to the common eye as something she would "grow out of".  While some of her skills were developing into more complex actions, the mentality of the behavior was not changing.  Hannah is some ways seemed, "stuck" and very "quirky".  For months after noticing something was "different" about Hannah, compared to her peers, she spoke mainly in movie quotes, had obsessive compulsive tendencies, and rarely came out of her imagination for a short minute conversation,  she struggled with sitting still, and displayed extreme clumsiness; however, would melt down like she didn't understand when she could not coordinate her body to do what she wanted it to do, I spent weeks arguing with myself and trying to learn how to communicate what I felt I saw.  I knew something wasn't right, but I just couldn't tell you exactly what it was, due to her age, and how quirky behaviors could easily be viewed as normal small child behavior.  I wrote down her behaviors that I found to be unusual and we took them to her pediatrician, who, found them to be grounds for a referral to the Cincinnati Children's Hospital.

In my time of processing it all, after the pediatrician's referral, and filling out all of the paperwork they mailed me, the time came to make the actual appointment, and I froze.   I hate to say this, but I roze.  I froze in doubt of what my gut told me.  I froze despite the conversations I had with others about Hannah's behavior that encouraged me to pursue confirmation or denial of our suspicions.  I struggled with feeling crazy.  So, I didn't call when it came time to schedule the appointment.  For months, I didn't call, but I couldn't move past what I felt was screaming inside that Hannah needs some help.  Denial is a dangerous thing, I knew that, and I knew that it could cause more damage than anything that could be going on with her.  I had to be reminded that there is help, there are resources, and I had to remember, most of all, that we were not alone in any of this.  

So, John called.  I was actually afraid, because it has been a few months, that they wouldn't have our information, and we would have to start over again, taking more time; however, they scheduled an appointment for November 2nd.   That day was an intimidating day for me and it felt like walking in to take a huge test of what I knew about Hannah and a huge test of how to communicate what I felt I saw.  The hospital staff were very nice and treated us well.  I think there are somethings, no matter how nice the hospital staff are, that really give you a difficult time while doing what you need to do when you are there. such as any concern you are internally dealing with concerning your child.  At the end of the visit, it was determined that Hannah struggles with Behavior Disturbance,Other Developmental Speech or Language Disorder and Sensory Disturbance.  We were prescribed to get Hannah an Occupational therapy Evaluation and a Speech-Language Evaluation.   Leaving this appointment, I just wanted to make sense of what we learned that day.  For me, that means reading as much as I possibly can about the topic.  No matter how much reading material that was made available, I knew, this is too big for me.  This was something I couldn't do for Hannah, but something, to the pain in my heart, she was going to have to go through herself with my support.  With her strong support system, Hannah has a battle she isn't even aware of, and many times I didn't know what to do that day, but something close to my heart popped in my head that day...

Dr. Suess', "Oh The Places You'll Go" has been a constant encouragement as I have wondered and worried and walked with Hannah.  God has used that story more than a couple of times to remind me that He has this covered.  The last time John, Hannah, Rylie, and I made a trip to Indiana to visit my father, his parents, and some of his siblings, we were given a book.  He felt, without knowing what was going on with Hannah, that she should have her very own collectors edition copy of the story.  So in honor of our Hannah as she grows and matures: "You won't lag behind, because you'll have the speed.  You'll pass the whole gang and you'll soon take the lead.  Wherever you fly, you'll be the best of the best.  Wherever you go, you will top all the rest."- Dr. Suess.