Rachael Pullman took these photos of Nicole and I love them!!
I have been needing to do this for quite awhile, so here I go. For a couple of years, Warren and I have known something was alittle off in Nicole. She is definately a social, likable, fun little girl, but something was not quite right - call it intuition. Her speech was severly delayed (about 1 1/2 years behind), she fell all the time, dropped things, and was also delayed in her motor development. For example, she has had a hard time learning to be potty trained, and has a very hard time riding a bike. She went to preschool this past year and also saw a speech therapist. A couple of months ago, we saw a developmental pediatrician to see how we should move forward. She recommended the MRI and hearing test to make sure nothing was up physically. A couple of weeks ago, Nicole had an MRI and hearing test and the results came back negative for everything. Everything looked great. We were very happy about the results. So, the developmental pediatrician moved on with what she, Warren, and I really thought was going on with our little Nicole. A couple of months ago Nicole was diagnosed with Apraxia of Speech which is a speech disorder that interferes with the ability to pronounce sounds, syllables and words. She has a hard time consistently positioning her face, tongue, lips, and jaw for the production of speech. Imagine having to think where your tongue and lips should go everytime you tried to say a word. The area of the brain that tells the muscles how to move and what to do to make a particular sound or series of sounds is damaged or not fully developed. This makes retrieving the "motor plan" for saying a word difficult. She has been going to speech now for about 6 months and improving a ton. She also had an occupational therapist evaluation, I filled out a ton of paper work, and Nicole played games with the OT (occupational therapist). About a week later, I met alone with the OT. She told me that Nicole has a sensory processing disorder (SPD) and a very mild form of dyspraxia. SPD occurs when the brain doesn't process sensory messages coming from a person's own body and her environment. Typically, our brain receives sensory information from our bodies and surroundings, and we than interpret these messages, and organize responses without conscious effort. We are probably not even aware that our bodies make adjustments when we go up stairs, keep upright, or do things that require balance. We are all familiar with the 5 senses, but we also have a tactile sense, vestibular sense (balance and movement), and proprioceptive sense (body positioning). Nicole's senses are "out of sync," basically not working the way they should. Where we can easily determine how far a step is or how hard to hug someone, Nicole has to think pretty hard about those things that come "naturally" to everyone else. Dyspraxia is a term that refers to a specific disorder in the area of motor skill development. People with dyspraxia have difficulty planning and completing intended fine and gross motor tasks. For example, if Nicole and I were playing "Simon Says" and I said raise this foot (pointing to the correct one) and point your toe, Nicole would probably raise the wrong foot and concentrate really hard at pointing her toe. I normally have to go over and help her or she uses her hands to make her toes point. Not every child with SPD is alike. It is a huge umbrella term where every child has strengths and weaknesses in all the areas of the senses. Nicole is a sensory craver and constantly seeks intense sensations, such as spinning, jumping, swinging, stuffing mouth, bumping and crashing into things. She specifically has a hard time with the vestibular sense (balance and movement), the propriceptive sense (body positioning), fine motor skills, and motor planning. She does great with the tactile sense, visual sense, smelling, and bilateral coordination.
After discussing all of this with the OT, we decided that it would be best for Nicole to have OT at the developmental center once a week along with her speech therapy. Because of our "lovely" insurance, she can only go once a week - but, she needs it about 3X a week. I left the office, and sat in the car reading all of the information that was just handed to me. I was fine with everything. I thought okay, now we know what is going on and we can move forward with treatment. Warren and I now understand how Nicole learns - YEAH!! I did have one concern. Everywhere I looked I saw the words "These children normally struggle with low self esteem." I thought, children have enough things to go through and now Nicole has to struggle with this on top of the normal things that come with growing up. My heart just broke. I cried a few times that day and Warren and I talked alot.
After a couple of weeks of praying and asking myself, "what do I do as her mother?" - it came to me. A couple of of good friends actually helped me come to the solution by phone calls and things they would say. I would create a home where Nicole was loved for who she was and work very hard at finding and developing Nicole's strengths. Our home was going to be a place where Nicole could come to find peace, love, and understanding.
With SPD, therapy is the best treatment. Most children with early therapy learn to manage their weaknesses, figure out how their brain works, and find their strengths. But, Nicole needs therapy more than once a week, so last week I decided to create a "Sensory Aware Home for my Sensory Seeking Child." I started out by researching alot online and reading 2 great books "The Out-of- Sync Child" and "The Out-of-Sync Child Has Fun." Because of my anal personality I needed a plan and the best way for me to follow a plan was to make a chart.
So I made a weekly chart with 3 activities each day. Each week I will change around the activities, to keep her interested and more stimualted. Here are a couple of examples.
Oral -Motor Skills
"Kiss the Mirror"
Develop muscles for articulation
Nicole loves "lip" or lipstick.
Fine Motor Skills/Proprioception/Motor Planning
"Piggy Toe Pick Up"
We put different objects in the water like marbles, toys, plastic silverware, and beads. Nicole has to use her toes to pick them up.
Proprioceptive Sense (Body Position)
"Crash Pad"
The past week I have learned to let some things go. For instance, rolling, jumping, spinning on the couch. I bought this big dog bed at Costco and it works pretty well for a crash pad for Nicole. She rolls off the couch onto it and lays on it with a vibrator under it. She LOVES it, even though it smells kind of strange because it is meant for a dog. I will keep my eyes open for a better "crash pad." This is sooooo good for Nicole because of the deep pressure on her joints and awareness of her body when force is applied.
I bought an extra pad for Kaylee to use, but it already got a hole in from 1 day of use. Nicole loved to made into a sandwich. She also loves to play steam roller with Warren and be wrapped up in my yoga mat like a hot dog.
Here she is relaxing on her crash pad with vibrator under it. She also likes to hum while laying on it .
Pushing and Pulling Things
This is part of a relay race where Nicole spins on a sit and spin, jumps on the trampoline, and lifts this cooler with canned goods in it.
She lifts this up 10 times in a row!! MUSCLE WOMAN!!
Kaylee and Nicole like to play car or train with the laundry baskets.
Vestibular Sense (Balance and Movement)
"Laundromat Game" Get into the "washing machine", put soap in (balls), and shake around. Everyone in the family loves this one.
Trampoline
She LOVES this one. We have also started to use it for time outs when she is too aggresive. She has to jump on it for 1 minute and it seems to calm her down.
Brushing Method with Deep compressions
This helps equalize some of the senses in her body. About 5 times a day we brush Nicole's body with a surgical brush and than push on the joints in her kness, ankles, elbows, wrists, and shoulders. At first she liked the brushing, but she is starting to get more uncomfortable with parts of it.
Nicole likes to take the brush and use it on her babies.
Tactile Sense Playdough!!
I hate this stuff. It makes such a mess and gets everywhere!! But, that is another thing I have to let go. I made some homemade playdough and I actually love it. It is not nearly as messy and Nicole loves to play with it!! Her favorite thing to do is cut it, hit it, and roll it.
These are just a few examples of the things we do with Nicole. All of the activities are alot of fun and Nicole does great. There are a few activities that frustrate her, especially the fine motor, motor planning, and oral planning activities. But, are motto is "You have to try it atleast once." I know I have said this alot - she is a trooper!!
I am posting about this so people can understand our little Olie. There is nothing so frustrating as watching Nicole interact with others and see her get turned away because she "aggressive." I know it is hard for little ones to understand when Nicole gives them a HUGE HUG, but I am hoping the moms can better understand Nicole.
So the next time Nicole comes up to you for one of her MASSIVE hugs, don't be afraid to give her an EXTRA TIGHT SQUEEZE!! She needs it, craves it, and loves it!!!!
