SPD: “Sensory Processing Disorder or SPD is a neurological disorder in which the sensory information that the individual perceives results in abnormal responses.” Basically in plain terms Havens body and brain are not capable of responding to all of her incoming senses. Her brain is not capable of organizing and responding to every day touch, sight, hearing, and feelings appropriately like most of us can. This is a neurological problem in her brain, she truly cannot help her responses or melt downs, and what looks like a normal toddler temper tantrum to many is actual an uncontrollable melt down caused by sensory overload and sometimes under load. There is actually eight sensory systems, rather than the five that most people think of, Visual, Auditory, Tactile, Olfactory, Gustatory, Vestibular, Proprioception,and Interoception.

Sensory Diet: “A sensory diet is a group of activities that are specifically scheduled into a child’s day to assist with attention, arousal, and adaptive responses. The activities are chosen for that child’s needs based on sensory integration theory.” Havens OT explained to me that her Sensory Diet is just as important as her actual diet, when her sensory input needs are met she is better equipped to handle regular daily activities. For us this has been a work in progress and a hard one at that, its a constant process of trial and error. Anyone that knows Havey knows she only does what she wants when she wants. So some days we may have good intent of getting in as much input as possible and Haven may want nothing to do with any of it. Other days she seeks us out and brings us or drags us to what activity her body is craving at that time. What works for one child does not work for all, Sensory kiddos are often labelled seekers or avoiders and sometimes both. Haven is definitely both, she seeks out some things and avoids others. Her Doctors, Therapists, Matthew, and myself are constantly trying new things to see what she likes. Her OT in Fort Wayne we see on Mondays has a giant gym we go to that is loaded with different things for her to try, her favorite thing there lately is the giant ball pit. She covers her entire body which helps to meet her tactile input needs.  We have put as many things into our house as possible to use on a daily basis and to have available for her other three therapists that come here weekly. Her favorites are her mini trampoline, her Lycra body slings we swing her around in, her bean bag she jumps into, play dough, rolling on her exercise ball, sensory bins and bottles, and playing at the sink in water. It seems lately she seeks out tactile things and deep impact things. She walked the entire zoo with no shoes on yesterday because she craves the input (thanks to every single person that stared at her, shame on you) no matter how hot, painful, or pokey it is, it doesn’t matter, she doesn’t feel the pain. She’s been rolling in mulch at the park lately which makes me cringe but it’s what her body needs at the moment and trying to stop her will only lead to a meltdown. She avoids touch from others, loud noises, clothes and shoes, and diapers. She gets overwhelmed very easily and it changes day to day on what she can and cannot handle.

Every Autistic child has SPD, but not every child with SPD is Autistic. It is a very slippery slope and a rather thin line to walk. In the beginning of our journey with ASD/SPD I was hopeful that Havey only had the SPD and anxiety. Its clear now HFA (high functioning autism) is much more accurate even though her sensory needs are very extreme. I feel like SPD is an extremely overlooked disorder and unless a child is Autistic it is not readily accepted by friends, family, and even some medical personnel, but it is definitely a very real and debilitating disorder. SPD makes it very hard to function in every day scenarios and have a normal life. Children with SPD and Autism alike thrive on consistency, they do not do well with change or disruptions to their schedule. When Haven is overwhelmed and overstimulated it is very clear. If she doesn’t completely melt down and shut down then she  retracts into me, her comfort zone, often times shutting her eyes or covering them, or covering her ears. Sometimes she is able to reset her system in a sense and keep going, other days we have to leave whatever situation we are in that is overloading her.

Some Sensory kids suffer with what is called Sensory Seizures or medically known as simple partial seizures. They are fully alert and able to interact but appear to be zoning out. Havens OT’s, DT, and Autism specialist have all shown concern of the possibility that Haven experiences Sensory Seizures. Although I have declined an EEG in the past and tried to push it to the back of my brain I will give her Specialist consent to order one when we visit her next month. Havens “zoning out” has been much more prevalent and if she actually is having seizures they can worsen into more severe and scary seizures that could have permanent damaging effects if not treated and controlled. That is an unfathomable thought for this momma so we will do as the doctors suggest.

I want to take a second to thank everyone for the unconditional love and support, and not passing judgement on myself or my family. I have had this blog for over four months and it took me every bit of those four months to muster up the courage to share this very real, hard, sometimes not pretty part of our lives with everyone. As I have said previously I am really hoping to help everyone better understand and interact with Haven and other beautiful babies like her. Also to shed some insight into my day to day struggles of being a special needs momma, I don’t feel like others always completely understand me. Often times it easier for me to keep quiet and to myself and internalize the hurt, pain, and fears rather than open up to others. I am not perfect, I loose my temper more often than I should, I struggle with not succumbing to the dirty looks and whispers when my Havey is being less than perfect in public situations, I’d really like to tell some people to piss off at times but bite my tongue, and we go through the McDonalds drive through more than I’d like to admit. But what i am is trying, with every ounce of my being I am trying to figure this all out and be the best momma I can be to these beautiful babies God entrusted me with. Thanks for loving us through the hard days and the good.

xoxo

Taylor