We go with her

We go with her

The truth is, nothing at all changed about Khloe but she has changed us in so many ways. But I’d be lying if I said that nothing changes. Things DO change. And you want to know what changes most profoundly? You. But please – I’m begging you – don’t let your dreams for your children change. Dreams evolve. They must.
Watch her. Follow her lead. Be patient. She will show you her strengths. More slowly than you might have thought, but they will begin to unfold. Because EVERYONE has strengths. And when they emerge, encourage them. Foster them. Build new dreams around them. Together. We’ve focused on the challenges instead of how great it is to seek help and all the progress she has made! So for now, we say she has Sensory Processing Disorder with language delays.

I have been worried that we were missing the big picture — that there must be some lurking, scary diagnosis which would account for not only her sensory problems, but for a while host of other “symptoms” as well.   So we’ve been confused.  What does she have exactly?  Will it affect her later?  Will she always have these struggles?  What does the sensory integration room help with?  I just didn’t get it! Would she get better on her own?  What is Sensory Processing Disorder anyways?  We are still left with no real answers.  Will therapy help?

Khloe still doesn’t talk at the normal level of a 2 1/2 year old. Her total understood vocabulary is about 10-15 words. Communication has been our most challenging. They are beginning to introduce sign language to her. Khloe’s most challenging is the sensory part. Her senses are constantly agitated and at times unbearable for her due to being overwhelmed. Mealtime especially poses a lot of problems for her.

We are Khloe’s most important advocates. It is our job to take care of her and love her no matter what the circumstance. This journey has been difficult but we have had a strong relationship built on this.

I embrace Khloe as such a unique gift that God gave us.  I love her unconditionally and will always do the very best I can to help her through this journey. I love her big hugs. I love her smile that melts your soul.  I love her infectious personality.  She has made me a better wife and mother.  Things have been very difficult but it is not the end of the world! 
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SENSORY PROCESSING DISORDER

*This will help explain more details of Sensory Processing Disorder

Sensory Processing Disorder affects the way a child processes messages sent to the brain from any of the five senses – sight, hearing, taste, smell and touch.  Most kids, like Khloe, are a mixture of both over- and under- sensitive, which explains why inconsistent behavior is a hallmark of the disorder.  Khloe’s additional senses that are affected are the vestibular and proprioceptive systems. They detect incoming sensory information, which is then delivered to the brain.

Vestibular refers to movement sensations such as swinging or going down a slide.  The proprioceptive system provides information to the muscles and joints, like telling the legs to apply more pressure when walking up stairs than when walking on flat ground, for example.  Continuously receiving jumbled messages can be frustrating for a child and her inexplicable reactions to everyday happenings can be confusing to parents.  The behavior can become more unpredictable when she is asked to transition from one activity to another.  It takes her a long time to focus and settle into what she is doing.  Asking her to turn her attention to something new can be too much for her.

Every child can have trouble shifting gears sometimes, but it is the number of senses affected and the severity of symptoms that determine whether a child has sensory processing disorder.  Khloe’s sensory preferences affect her normal, everyday functioning.   If a child’s sensory needs are intense and persistent, every day activities are difficult for her.  For example, your child might not like the sensation of Play-Doh in her hands.  This might not seem important but that is one way kids develop the muscles and coordination to accomplish skills that are necessary later, such as holding a pencil.

Treatment consists of carefully designed, multisensory activities that challenge one or more of the sensory systems simultaneously—such as swinging while throwing bean bags at a target, which represents both a vestibular and visual challenge.  The goal is to help build neural pathways that lead to appropriate responses to information that comes into a child’s brain through the senses.  This is time-consuming and requires frequent repetition, but it is necessary.  Every time you practice something, you strengthen the neural connections so that it eventually becomes automatic.

We have learned to recognize when Khloe needs extra stimulation, often by using a mini trampoline, swing, slide or spinning.  We just say “ok, it’s time to spin/jump!”  When she does this, it really calms her.  Khloe will also chew on a NUK brush to help strengthen the muscles in her jaw and get used to sensations in the back of her mouth.  Another technique is called “brushing”.  This is used when children react too strongly to stimuli.  A specially trained therapist uses a special surgical brush to apply deep pressure to her skin and relax her along with compressing joints.  A child who doesn’t get enough proprioception will seek ways to stimulate the muscles or joints–continuously moving, or chewing constantly on non-food items.

In the last year, SPD has taken some big hits from the medical community.  The AAP released a statement saying it should generally not be diagnosed because studies have yet to prove that it is completely separate from other developmental disabilities. They feel that they can see kids have problems but that they might be related to another disorder. A child doesn’t need to have a diagnosis to get help but it can be helpful to have one.  Therapy sessions cost $130 for an hour.  Your child can qualify for services under a diagnosis code.  For example, kids often have motor problems and OT will be covered for that.  Children can also be treated through the school system and receive therapy because they qualify for specialized services.

Our great news from a few weeks ago is we got approved for First Steps.  They will come to our home weekly instead of traveling every week to Batesville.  They will also transition her to preschool at age 3.  This service is all free to us, which is so helpful since we’ve had a lot of insurance issues and being billed out of pocket.

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