Breakthrough Study Reveals Biological Basis for Sensory Processing Disorders in Kids-Term life

 

The image shows areas of the brain that can be affected by sensory processing disorders. Using an advanced form of MRI, researchers at UCSF have identified abnormalities in the brain structure of children with SPD primarily in the back of the brain.

Sensory processing disorders (SPD) are more prevalent in children than autism and as common as attention deficit hyperactivity disorder, yet the condition receives far less attention partly because it’s never been recognized as a distinct disease.

 

In a groundbreaking new study from UC San Francisco, researchers have found that children affected with SPD have quantifiable differences in brain structure, for the first time showing a biological basis for the disease that sets it apart from other neurodevelopmental disorders.

One of the reasons SPD has been overlooked until now is that it often occurs in children who also have ADHD or autism, and the disorders have not been listed in the Diagnostic and Statistical Manual used by psychiatrists and psychologists.

“Until now, SPD hasn’t had a known biological underpinning,” said senior authorPratik Mukherjee, MD, PhD, a professor of radiology and biomedical imaging and bioengineering at UCSF. “Our findings point the way to establishing a biological basis for the disease that can be easily measured and used as a diagnostic tool,” Mukherjee said.

The work is published in the open access online journal NeuroImage:Clinical.

‘Out of Sync’ Kids

Sensory processing disorders affect 5 to 16 percent of school-aged children.

Graphic that says "Sensory processing disorders affect 5 to 16 percent of school-aged children."

Children with SPD struggle with how to process stimulation, which can cause a wide range of symptoms including hypersensitivity to sound, sight and touch, poor fine motor skills and easy distractibility. Some SPD children cannot tolerate the sound of a vacuum, while others can’t hold a pencil or struggle with social interaction. Furthermore, a sound that one day is an irritant can the next day be sought out.  The disease can be baffling for parents and has been a source of much controversy for clinicians, according to the researchers.

 

“Most people don’t know how to support these kids because they don’t fall into a traditional clinical group,” said Elysa Marco, MD, who led the study along with postdoctoral fellow Julia Owen, PhD. Marco is a cognitive and behavioral child neurologist at UCSF Benioff Children’s Hospital, ranked among the nation’s best and one of California’s top-ranked centers for neurology and other specialties, according to the 2013-2014 U.S. News & World Report Best Children’s Hospitals survey.

“Sometimes they are called the ‘out of sync’ kids. Their language is good, but they seem to have trouble with just about everything else, especially emotional regulation and distraction. In the real world, they’re just less able to process information efficiently, and they get left out and bullied,” said Marco, who treats affected children in her cognitive and behavioral neurology clinic.

“If we can better understand these kids who are falling through the cracks, we will not only help a whole lot of families, but we will better understand sensory processing in general. This work is laying the foundation for expanding our research and clinical evaluation of children with a wide range of neurodevelopmental challenges – stretching beyond autism and ADHD,” she said.

Imaging the Brain’s White Matter

In the study, researchers used an advanced form of MRI called diffusion tensor imaging (DTI), which measures the microscopic movement of water molecules within the brain in order to give information about the brain’s white matter tracts. DTI shows the direction of the white matter fibers and the integrity of the white matter. The brain’s white matter is essential for perceiving, thinking and learning.

These brain images, taken with DTI, show water diffusion within the white matter of children with sensory processing disorders.  Row FA: The blue areas show white matter where water diffusion was less directional than in typical children, indicating impaired white matter microstructure.  Row MD: The red areas show white matter where the overall rate of water diffusion was higher than in typical children, also indicating abnormal white matter.  Row RD: The red areas show white matter where SPD children have higher rates of water diffusion perpendicular to the axonal fibers, indicating a loss of integrity of the fiber bundles comprising the white matter tracts.

The study examined 16 boys, between the ages of eight and 11, with SPD but without a diagnosis of autism or prematurity, and compared the results with 24 typically developing boys who were matched for age, gender, right- or left-handedness and IQ. The patients’ and control subjects’ behaviors were first characterized using a parent report measure of sensory behavior called the Sensory Profile.

The imaging detected abnormal white matter tracts in the SPD subjects, primarily involving areas in the back of the brain, that serve as connections for the auditory, visual and somatosensory (tactile) systems involved in sensory processing, including their connections between the left and right halves of the brain.

“These are tracts that are emblematic of someone with problems with sensory processing,” said Mukherjee. “More frontal anterior white matter tracts are typically involved in children with only ADHD or autistic spectrum disorders. The abnormalities we found are focused in a different region of the brain, indicating SPD may be neuroanatomically distinct.”

The researchers found a strong correlation between the micro-structural abnormalities in the white matter of the posterior cerebral tracts focused on sensory processing and the auditory, multisensory and inattention scores reported by parents in the Sensory Profile. The strongest correlation was for auditory processing, with other correlations observed for multi-sensory integration, vision, tactile and inattention.

The abnormal microstructure of sensory white matter tracts shown by DTI in kids with SPD likely alters the timing of sensory transmission so that processing of sensory stimuli and integrating information across multiple senses becomes difficult or impossible.

“We are just at the beginning, because people didn’t believe this existed,” said Marco. “This is absolutely the first structural imaging comparison of kids with research diagnosed sensory processing disorder and typically developing kids. It shows it is a brain-based disorder and gives us a way to evaluate them in clinic.”

Support SPD Research

Thanks to groundbreaking work from UCSF Benioff Children’s Hospital San Francisco, a biological basis for SPD has been discovered.  There is much work to be done and a funding gap. We still need to:

  • Understand the genetic causes of sensory processing differences
  • Uncover risk factors for SPD
  • Measure the neurologic brain differences in affected individuals
  • Determine if current interventions are truly effective for brain plasticity
  • Develop new therapies based on scientific evidence

You can pave the way for a new era of sensory research and therapies by supporting UCSF’s scientific sensory processing team.

Learn how you can help.

Future studies need to be done, she said, to research the many children affected by sensory processing differences who have a known genetic disorder or brain injury related to prematurity.

The study’s co-authors are Shivani Desai, BS, Emily Fourie, BS, Julia Harris, BS, and Susanna Hill, BS, all of UCSF, and Anne Arnett, MA, of the University of Denver.

The research was supported by the Wallace Research Foundation. The authors have reported that they have no conflicts of interest relevant to the contents of this paper to disclose.

UCSF Benioff Children’s Hospital creates an environment where children and their families find compassionate care at the forefront of scientific discovery, with more than 150 experts in 50 medical specialties serving patients throughout Northern California and beyond. The hospital admits about 5,000 children each year, including 2,000 babies born in the hospital.

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Kids with autism and sensory processing disorders show differences in brain wiring- Term life

Source:University of California, San Francisco (UCSF)

Summary:Researchers have found that children with sensory processing disorders have decreased structural brain connections in specific sensory regions different than those in autism, further establishing SPD as a clinically important neurodevelopmental disorder

Researchers at UC San Francisco have found that children with sensory processing disorders have decreased structural brain connections in specific sensory regions different than those in autism, further establishing SPD as a clinically important neurodevelopmental disorder.

The research, published in the journal PLOS ONE, is the first study to compare structural connectivity in the brains of children with an autism diagnosis versus those with an SPD diagnosis, and with a group of typically developing boys. This new research follows UC San Francisco’s groundbreaking study published in 2013 that was the first to find that boys affected with SPD have quantifiable regional differences in brain structure when compared to typically developing boys. This work showed a biological basis for the disease but prompted the question of how these differences compared with other neurodevelopmental disorders.

“With more than 1 percent of children in the U.S. diagnosed with an autism spectrum disorder, and reports of 5 to 16 percent of children having sensory processing difficulties, it’s essential we define the neural underpinnings of these conditions, and identify the areas they overlap and where they are very distinct,” said senior author Pratik Mukherjee, MD, PhD, a professor of radiology and biomedical imaging and bioengineering at UCSF.

SPD can be hard to pinpoint, as more than 90 percent of children with autism also are reported to have atypical sensory behaviors, and SPD has not been listed in the Diagnostic and Statistical Manual used by psychiatrists and psychologists.

“One of the most striking new findings is that the children with SPD show even greater brain disconnection than the kids with a full autism diagnosis in some sensory-based tracts,” said Elysa Marco MD, cognitive and behavioral child neurologist at UCSF Benioff Children’s Hospital San Francisco and the study’s corresponding author. “However, the children with autism, but not those with SPD, showed impairment in brain connections essential to the processing of facial emotion and memory.”

Children with SPD struggle with how to process stimulation, which can cause a wide range of symptoms including hypersensitivity to sound, sight and touch, poor fine motor skills and easy distractibility. Some SPD children cannot tolerate the sound of a vacuum, while others can’t hold a pencil or struggle with emotional regulation. Furthermore, a sound that is an irritant one day can be tolerated the next. The disease can be baffling for parents and has been a source of much controversy for clinicians who debate whether it constitutes its own disorder, according to the researchers.

“These kids, however, often don’t get supportive services at school or in the community because SPD is not yet a recognized condition,” said Marco. “We are starting to catch up with what parents already knew; sensory challenges are real and can be measured both in the lab and the real world. Our next challenge is to find the reason why children have SPD and move these findings from the lab to the clinic.”

In the study, researchers used an advanced form of MRI called diffusion tensor imaging (DTI), which measures the microscopic movement of water molecules within the brain in order to give information about the brain’s white matter tracts. The brain’s white matter forms the “wiring” that links different areas of the brain and is therefore essential for perceiving, thinking and action. DTI shows the direction of the white matter fibers and the integrity of the white matter, thereby mapping the structural connections between brain regions.

The study examined the structural connectivity of specific white matter tracts in16 boys with SPD and 15 boys with autism between the ages of 8 and 12 and compared them with 23 typically developing boys of the same age range.

The researchers found that both the SPD and autism groups showed decreased connectivity in multiple parieto-occipital tracts, the areas that handle basic sensory information in the back area of the brain. However, only the autism cohort showed impairment in the inferior fronto-occipital fasciculi (IFOF), inferior longitudinal fasciculi (ILF), fusiform-amygdala and the fusiform-hippocampus tracts — critical tracts for social-emotional processing.

“One of the classic features of autism is decreased eye-to-eye gaze, and the decreased ability to read facial emotions,” said Marco. “The impairment in this specific brain connectivity, not only differentiates the autism group from the SPD group but reflects the difficulties patients with autism have in the real world. In our work, the more these regions are disconnected, the more challenge they are having with social skills.”

Kids with isolated SPD showed less connectivity in the basic perception and integration tracts of the brain that serve as connections for the auditory, visual and somatosensory (tactile) systems involved in sensory processing.

“If we can start by measuring a child’s brain connectivity and seeing how it is playing out in a child’s functional ability, we can then use that measure as a metric for success in our interventions and see if the connectivities are changing based on our clinical interventions,” said Marco. “Larger studies to replicate this early work are clearly needed but we are encouraged that DTI can be a powerful clinical and research tool for understanding the basis for sensory neurodevelopmental differences.”

The study’s co-authors are Yi-Shin Chang, BSE, MS , Julia Owen, PhD, Shivani Desai, BS, Susanna Hill, BS, Anne Arnett, MA, and Julia Harris, BS,

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10 Rules for Parenting a Child with Sensory Processing Disorder- Advanced mold remediation

Every year, thousands of young children are diagnosed with disorders that make it difficult for them to absorb the external world. Parents of sensory kids—like those with sensory processing disorder, AD/HD, autism, bipolar disorder, and OCD—often feel frustrated and overwhelmed, creating stress in everyday life for the whole family.

 

sensory processing disorder in children

I know a little bit about this myself. I’m the parent of a sensory child, as well as the owner of a business founded to help these kids and their families function in the world. So I know firsthand the struggles that parents face in trying to bring out the best in their rigid, anxious, or distracted sensory children. In my work with my own family, as well as with the countless families I’ve worked with in my company, Systems for Sensory Kids, I’ve come up with my own rules for parenting a sensory child—some guidelines to keep in mind when things get tough. While they are especially applicable for parents of sensory children, in reality ALL of us can benefit from keeping these truisms front of mind when we face tough situations with our kids.

 

Your job is not to compare yourself to other parents around you, but to figure out what works for your own family. Here are a few new parenting rules to help get you started.

Your child’s disorder is not a reflection on you or your parenting. Looking at things for how they really are and letting go of the why or how it happened can get us to a neutral, open place. You will need to gain a level of confidence that these new parenting rules are right for your child. The reality is that parents of typical children or members of your own family will question your approach. They are usually coming from a place of wanting to help, but have no frame of reference or experience with sensory children. Stick to your guns! Only you know what is best for your sensory child and your family.

 

Let go of guilt and anger. When you are in a place of blame, guilt, or anger, you are making your sensory child’s experience about you, and this takes away your power to advocate for them effectively.

 

Value the gift of the experience. Get in a habit of sitting down and writing out a gratitude list of all the wonderful things you have learned and experienced as a result of being the parent of a sensory child.

 

Initially, parenting a sensory child is a counter intuitive process. What might work when parenting most typical kids usually will not work in the same way for sensory kids. It takes more conscious thought and preparation for daily activities to parent a sensory child. If you can be mindful of this one idea, you will be able to adjust and adapt your plans to the daily situations that might be a challenge.

 

Celebrate your child’s strengths. Have a solid understanding of your sensory child’s strengths. Write out a list of all your child’s great characteristics. Sensory kids are special and among some of the most successful adults in the world. You are going to run into many people who won’t understand or appreciate what they bring to the table—make sure you do!

Parenting a sensory child is a marathon, not a race. Parenting is a journey and with a sensory child, the journey tends to have many twists and turns. Focus on the long-term objectives and then create the steps needed to get there.

No sensory solution works forever. Frequent amendments will be needed to support your growing and ever-changing sensory child. All kids grow and change, and these changes can be more exaggerated for sensory kids. When you understand how to tap into structure, routines, and visual aids, you will be able to find solutions to the changing landscape you will face over time with your sensory child.

 

Embrace when you do it all wrong. The bottom line is that you can learn more about how to better support your sensory child when something goes all wrong as opposed to the hundred times you do it right. Embrace the lessons in the “wrong” experiences.

 

Be guided by love and understanding. Our sensory kids just want to feel safe, loved, and understood. They are great kids who have a hard time learning the rules of life in the traditional way. They need and want to have times every day when they are in an environment that they understand and that supports their way of seeing the world. You can do this for them at home.

 

Pass it on. One of the best long-term gifts we can give sensory children is to teach them the tools. If you start sensory organizing at an early age, your sensory child will have years of practice, trial and error, and examples of real success. The goal is for this to be a way of life for them so when they are in high school and feeling overwhelmed, they stop and say, “What’s my plan to handle this or get this done?” That is the definition of self-reliance (and successful parenting).

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How I Explained Sensory Processing Disorder to My 4-Year-Old- Term life

You know that feeling of irritation you get if the tag on the back of your brand new T-shirt is scratching up against your skin? It bothers you until you take the shirt off and take scissors to it, or it drives you to just rip the it off completely, not even bothered if you end up leaving a hole in your new shirt.

What about that pair of socks you thought would fit and feel just right, and half way through your day, you realize they do not feel or fit just right and you are taking them off in a frenzy so you can feel free and breathe.

And then there’s that feeling of having someone put their hand on your back, or trying to hold your hand, wanting to hug you, or even kiss you — it actually hurts you, and you can’t explain it, you just can’t. So you avoid affection because that is your way of protecting yourself from the pain of human touch.

How do I explain this to my beautiful little girl? She’s 4 years old and I didn’t know how to explain it to her. How do I explain it to her in a way she would understand? How do I explain her younger sister has sensory processing disorder?

Zoey is 3 years old, she’s diagnosed with autism, global delay, ADHD, dyspraxia of speech and sensory processing disorder.

That is hard enough for me to understand, never mind my 4-year-old understanding it.

I put it off, and I would say to her that her sister is “different,” and that “different” isn’t bad.

That explained nothing. I was taking the easy way out. She watched as her younger sister had a year of intensive in-home therapies with multiple therapists, all of them with their own special bag of toys, all coming to play with her little sister. My big girl watched, and every day said, “What about me?” I saw the sadness in her eyes, and I watched as my big girl was feeling left out and confused.

She watched as her little sister got so much more attention, and she started to regress herself because “What about me?” was how she felt, and if she was “different” like her little sister then she would get to have all the extra attention and play with all of the therapists’ special toys.

I had no idea what to say, what to do, or how to help them both. I needed to help them both. I took my big girl aside one night and we had a talk in her room, just her and I. I was not sure how this talk was going to go, but it was time to explain it to her in a “different” way.

I looked at my beautiful 4-year-old and I said, “You know how you have “itchies” on your arms and legs (eczema) and they bother you so much that you scratch them until they feel better, but they don’t ever really feel better until Mommy gives you lotion to help?”

My big girl looked up at me and she said, “Yes, those itchies hurt so bad, and I scratch and scratch and it doesn’t feel better until you help me.”

I said, “Yeah, I help you to make those ‘itchies’ not itch so bad. Your ‘itchies’ are on the outside, and we can see them and we know where they are. Well, sissy’s ‘itchies’ are on the inside, and Mommy can’t see them, so I help her by giving her ‘squeezes’ (deep pressure message on her arms and legs) so she doesn’t itch so bad.”

I know that saying she’s “different” wasn’t working for us, and I finally found a way to explain sensory processing disorder to my beautiful big girl.

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Early Signs and Symptoms Of SPD In Infants And Toddlers Missed by Mostly Parents-Term life

The purpose of this “SPD Symptom Checklist For Infants and Toddlers” is to help parents and professionals who interact with children become educated about particular signs of sensory processing disorder in the youngest children and babies.

It is not to be used as the absolute diagnostic criteria for labeling children with sensory processing disorder. But rather, as an educational tool and checklist for your own knowledge. Professionals who can diagnose this disorder have their own tools in addition to checklists to observe and test for SPD (formerly called SID or Sensory Integration Dysfunction).

 As you go through this list, you may say,“Wow, my child has so many of these characteristics/behaviors, he must have a sensory processing disorder!!”

 

 

 

That MAY be true, and I want you to take it very seriously if you find a host of these to be characteristic of your child. But, then use this as a guide to speak with your doctor and an Occupational Therapist so you can clearly explain why you think your child may need help.

Or, you may go through the list and say,

“No big deal, so my child has some of these behaviors/characteristics, doesn’t every child?”

Well, this may be true too and your child’s behavior may fluctuate from day to day.

What we need to be concerned with is WHICH symptoms your child shows, how much these symptoms interfere with their or other’s lives, and what kind ofimpact it is having on their level of functioning. This will help target diagnosis and treatment.

Early identification and understanding of this disorder is HUGE!

Please understand the “Five Caveats” that Carol Stock Kranowitz points out in her book, The Out-of-Sync Child about using a checklist such as this. She writes:

1. “The child with sensory dysfunction does not necessarily exhibit every characteristic. Thus, the child with vestibular dysfunction may have poor balance but good muscle tone.”

2. “Sometimes the child will show characteristics of a dysfunction one day but not the next. For instance, the child with proprioceptive problems may trip over every bump in the pavement on Friday yet score every soccer goal on Saturday.“Inconsistency is A hallmark of every neurological dysfunction.”

3. “The child may exhibit characteristics of a particular dysfunction yet not have that dysfunction. For example, the child who typically withdraws from being touched may seem to be hypersensitive to tactile stimulation but may, instead, have an emotional problem.”

4. “The child may be both hypersensitive and hyposensitive. For instance, the child may be extremely sensitive to light touch, jerking away from a soft pat on the shoulder, while being rather indifferent to the deep pain of an inoculation.”

5. “Everyone has some sensory integration problems now and then, because no one is well regulated all the time. All kinds of stimuli can temporarily disrupt normal functioning of the brain, either by overloading it with, or by depriving it of, sensory stimulation.”

IF, you in fact check off many of these symptoms, an OT evaluation should be considered. IF, in your gut, you know something just isn’t right… listen to it!

Take this checklist with you and go get an evaluation. We NEED to catch SPD in the earliest years of life for the treatment to be the MOST effective; while their nervous systems are still developing. The time is NOW… for you, your child, and your family!

Again, this is NOT to be used to OFFICIALLY diagnose SPD, just to indicate if further evaluation is needed.

 

 SPD Symptom Checklist For Infants &Toddlers

 

__ Resists being held or cuddled

__ Cries and/or arches back when people try to hold him/her

__ Distressed by diaper changes

__ Distressed by baths and/or water splashing on him/her

__ Doesn’t fall into a predictable sleep/wake pattern or cycle

__ Cries excessively throughout the day (more than a half hour or hour at a time)

__ Doesn’t smile often, appears “sad” or “uncomfortable” much of the time

__ Has distinct preferences for adults of certain energy levels or voices (i.e., intonation, loudness, high pitched, low pitched, etc.)

__ Avoids eye contact, has difficulty focusing on objects or following them with eyes

__ Distressed when moved suddenly or whole body and/or head is tipped

__ Distressed by rocking motions

__ Distressed when moving in space (i.e., swinging around, bouncing up and down, or being “thrown” up in the air)

__ Doesn’t appear to respond to name or familiar voice

__ Can’t seem to calm baby down no matter what you try (or there is only ONE thing that does, i.e., a car ride)

__ Difficulty breastfeeding

__ Difficulty with sucking, chewing, or swallowing

__ Doesn’t tolerate new foods well

__ Gags or vomits from textured foods or on variety of different foods (very limited diet for age)

__ Does not seem to sense when diaper is wet or dirty

__ Cries inconsolably until a wet or dirty diaper is changed

__ Prefers to be without clothing

__ Severe separation anxiety

__ Tantrums many times a day

__ Distressed by sunlight or bright lights

__ Distressed in public places, especially if crowded or noisy

__ Doesn’t enjoy regular interactive movement games, i.e., peek-a-boo, pat-a-cake, etc.

__ Doesn’t notice new toys/novel toys and/or resists playing with them

__ Only uses one hand to manipulate and explore toys and/or can’t switch from hand to hand

__ Unable to bang toys together or clap hands (at appropriate age)

__ Keeps hands fisted and closed most of the time

__ Distressed by dirty hands or face

__ Cries inconsolably when left with strangers or less familiar people

__ Significantly late to talk, walk, gesture, smile, hold bottle, sleep through the night, manipulate/play with toys, etc.

__ Major difficulties transitioning to solid foods and/or rice cereal after bottle or breast fed

__ Can not hold onto or use objects or utensils well for age

__ Regularly avoids certain foods, food categories, consistencies, temperatures of food, eliminates whole food groups, etc.

__ Difficulties with excessive reflux or allergies to foods and/or formulas

__ Doesn’t seem to notice sounds others do

__ Frequent ear infections

__ Sensitive to sounds others don’t seem to be bothered by

__ Difficult to engage; is an observer, doesn’t interact with peers or adults

__ Apprehensive and/or distressed by playground equipment

__ Distressed by baby swings, jolly jumpers, wagon/stroller rides, car rides, etc.

__ Avoids putting toys in mouth, exploring them with her mouth

__ Baby gags or vomits when objects are placed in his mouth

__ Beyond teething stage, always has something in his/her mouth, or chewing on clothes, hands, fingers

__ Avoids categories of toys, i.e., vibrating, stuffed animals, rough textured toys, slippery/slimy toys, brightly colored objects, etc.

__ Appears overwhelmed, cries, or falls asleep when over stimulated

__ Refuses/distressed by certain positions, i.e., being on tummy, on back, sitting, etc.

__ Stays in one position and becomes uncomfortable when moving to another; if moving on own has significant difficulty transitioning to another position (hard to do, awkward)

__ You find you are always trying to be one step ahead of baby; trying to control his environment and “warning” people what to do/not to do so baby is comfortable

__ Difficulty staying asleep for more than 30 minutes at a time, or wakes up frequently throughout the night, unable to soothe himself back to sleep

__ Seems to get too much sleep, very short time when he is alert, playing, responding, and interacting

__ Has significant difficulty waking up

__ Needs a particular sound to stay asleep, i.e., fan, nature tape, white noise, music, etc.

__ Will not sleep if there is any noise

__ Wakes with the sun

__ Can not fall asleep anywhere but home, in familiar environment

__ Needs excessive help to fall asleep…rocking, bouncing, singing, rubbing back, etc. for long periods of time

__ Uncomfortable if not swaddled tightly; or, if older, needs heavy blankets, stuffed animals, or tighter pajamas for weight and pressure on them to fall asleep well

__ Able to switch moods effectively and relatively quickly… easily distracted if upset, “gets over it” within a reasonable amount of time, a favorite toy/face/sound will soothe him/her

__ Excessively attached to a pacifier

__ Never attached to any comfort object, i.e., blanket, stuffed animal, rubbing something, pacifier, thumb, etc.

__ Doesn’t reach for or hold toys (especially textured toys) at appropriate age

__ Closes hand if toy coming near it, or drops it immediately if placed in hand

__ When begins to walk, walks on tip toes only, will not put bare feet on ground/floor

__ Distressed by textured materials under themselves

__ Appears distressed by movement; i.e., a startled response, arches back, frightened look in eyes, etc.

__ Does not crawl before walks (or limited/different type of crawl)

__ Craves movement, distressed if not moving, being swung, rocking, bouncing, rocks self constantly

__ Does not play reciprocally with caregivers or familiar people

__ Frequently engages in repetitive, non-purposeful play with one or two objects

__ Can not switch activities or participate in daily routines without distress when transitioning from one to another

__ Baby is not understood using language, cues, gestures, etc. and becomes frustrated frequently

__ Frequent head banging, hitting, biting, pinching, or hurting self or others

__ Breaks toys frequently

__ Unable to be gentle with animals

__ Appears uncoordinated, frequently bumps into things

__ Can not focus attention on play, caregiver, or toy long enough to interact (for age level)

__ Wanders around aimlessly or engages in non-purposeful activities in excess, i.e., spinning, rocking, staring at certain objects, etc… not interested in play or doesn’t use objects for purposeful play.

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How-To-Cope-With-Your-Childs-Sensory-Processing-Disorder_FT

Top 10 red flags for Sensory Processing Disorder- Term life

I wanted to put this list out there because one of the most common questions I get from parents and other professionals is “What should I look for if I think it’s a “sensory” issue?”.  This list is by no means inclusive of all of the difficulties a child can have as a result of processing delays but does hit on some of the most common symptoms we see with SPD.

1.      Difficulty with grooming tasks, specifically having teeth brushed, hair and nails cut, and washing hair and body. We are talking about SIGNIFICANT dislike…so much so that it might take multiple adults to hold the child down to cut nails, the family has stopped even attempting to give the child hair cuts, or the child is unsafe in the bath tub because they have such huge fits when getting washed/handled in the water.

2.      Picky eater. Refusing certain food textures (smooth, crunchy, lumpy) or resisting certain flavors / temperatures.  Unfortunately, this can be hard because lost of toddlers are picky eaters.  But, again, we are looking for  pretty significant difficulties with feeding, so much that the family routine and/or child’s nutrition are being disrupted.  We might see a child only wanting crunch foods (pretzels, chips, crackers) or not eating foods with multiple textures (peanut butter and jelly sandwhich). Sometimes children show a tendency to want only beige starch foods (french fries, bread, crackers).  Other children might resist certain temperatures (only want food at room temperature, NOTHING cold).

3.      Extreme difficulty with having face and hands get messy during feeding and play activities. I hear parents say “He will shake his hand and whine until I wipe his hand clean if he gets any food on it when we are eating”.  These children might also resist eating messy/puree foods altogether.

4.      Disliking playing in the sand, having lotion on skin, or wearing certain fabrics. Often times, children with tactile sensitivities or tactile defensiveness will shy away from play activities where the substance stays on their hands. These activities (finger painting, sand play, shaving cream) are all “light touch” activities and light touch is the kind of tactile input children most frequently have difficulty interpreting correctly.

5.      Showing fear when having head tilted backward (when changing diapers or playing at the park). Thse behaviors could be indicators that children are not understanding their relationship with gravity as a result of poor vestibular processing. Frequently, these children have a history of struggling with diaper changes or with having their hair rinsed in the bath tub.

6.      Showing fear with having feet off of the ground (swinging, rough house play, stepping off curbs). Again, these are behaviors that could indicate a child is not processing movement (vestibular) input correctly and struggles with having a good understanding of what it feels like to be on a curb 4 inches off of the ground versus a balance beam 4 feet off of the ground.

7.      Constant climbing / jumping/ crash such that the child has difficulty sitting still to complete a simple, sort, age appropriate play activity. This can be a very difficult area to assess as toddlers are expected to still be learning how to sit and engage in simple play activities. So what we look for is a child who craves movement so much that he/she struggles significantly with seated work that lasts for more than 1-2 minutes. We also look to see if the child struggles remaining at the dinner table, darts from family consistently when in public settings, and is observed to climb and jump on household objects excessively.

8.      Seeking spinning, swinging or other movement activities excessively. These types of behaviors could indicate that a child is not processing vestibular input efficiently and as a result needs extra movement to help their level of arousal get to a “just right” state. We might seek children spin in circles, run around a rug in the family room, or drive a ride-on-toy around the kitchen island for hours.

9.      Muscles that seem loose or floppy, such that the child slouches or struggles with sitting upright for long periods of time. Children with vestibular processing delays are frequently noted to have low muscle tone. We describe children with low muscle tone as looking loose or floppy and seem to have extra movement around their joints.

10.  Difficulty with transitions and sleep can be related to processing delays at times. Sometimes, children can struggle with filtering all the sensory information they get from the environment as well as from their own bodies. We call this ability to regulate our own level of arousal “modulation”. Children with modulation difficulties are frequently reported to have difficult self calming, have extreme tantrums, have difficult getting and staying asleep, and have difficult with transitioning between tasks and activities.

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My Son Has A Sensory Processing Disorder & This Is What It’s Like- Drug rehab center

My son is incredibly sweet, lovable, and smart. He is my first child, and he just recently turned 6 years old. He’s currently in kindergarten, takes karate and swim lessons, and loves climbing and running at our local playground with his younger brother and sister. He loves animals and can tell you absolutelyeverything about them. He was recently selected as “Student of the Month” for the Virtue of Kindness — I was both so proud and not at all surprised. He’s an amazing child. He has a huge heart, and he loves to play and run. He also asensory processing disorder, which makes day-to-day life difficult at times.

Every day, hour by hour, minute by minute, my son is on high alert for the next “surprise” to come his way. These “surprises” can be any number of things: fire drills at school, overcrowded rooms, getting a haircut, clipping his nails, having his picture taken, making a scheduled trip to the doctor, even watching his favorite part of a TV show — and that’s just the short list. Each of these seemingly “normal” situations has the potential to set him into a tailspin of fear, anger, and sadness. I do my best to prepare him on what to expect when we go places and to intercept anything upsetting that might come his way, but the idea that I’m ready for any- and everything is impossible. I mean, I’m good, but not that good.

 
Courtesy of Lee Hayden

His reactions to these situations can range from covering his ears, to pacing, to crying, to yelling, or to running from the room. We never know what the “surprise” may trigger. Even though none of these are ideal behaviors to deal with, we’ve been fortunate that as he gets older and understands more about his sensory processing disorder, it’s becoming easier to redirect him and focus on more positive behavioral reactions to whatever is upsetting him. It’s a work in progress, and it’ll likely always be.

According to the Sensory Processing Disorder Foundation (SPDF), a sensory processing disorder (SPD) occurs when sensory signals don’t get organizedinto appropriate responses. It’s commonly referred as a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. SPDF also notes that a sensory processing disorder manifests differently for every person. Motor clumsiness, anxiety, depression, school failure, behavioral problems, and more are all common in individuals with SPD.

Sometimes I worry that people just view my son as a spoiled, bratty kid. To an onlooker who doesn’t know us, my son doesn’t look any different from a “regular” kid. But he is.

My husband and I always say that if our son wasn’t our first, maybe we would’ve been quicker to pick up on the red flags in his behavior without brushing them off. Not that we would’ve compared our children to each other, but we would’ve have something to measure against; a warning sign to look out for. Instead, we made excuses for as long as we could, but it the idea that something was “wrong” was always in the back of our minds. And finally, at his 2-year appointment, however, we got the answers we’d been putting off. We met with early intervention observation teams, neurologists, developmental pediatricians, and neuro-psychologists. Our developmental pediatrician agreed that our son’s behavior was not typical for his age and that he did in fact have sensory issues. He was also diagnosed with a sensory processing disorder, and then he was also diagnosed with a speech and language delay. Although we were happy to have answers and a path in which to find help, the news was devastating to hear.

Courtesy of Lee Hayden

I constantly feel like I’ve failed my son because I can’t always prepare him for every possible oncoming scenario. I do my best to help him through, and to give him all the details I have, but I can’t predict what comes next.

A few months ago, when he wasn’t feeling well, I explained that we needed to have the doctor check him out in case medicine was needed to help him feel better. The check-up included a swab of his throat to check for strep, and to say the throat culture made him incredibly upset is a severe understatement. Every move the doctor made served as yet another surprise to add to the ever-growing list of things my son doesn’t react well to. When all was said and done, he was a mess of tears and wails and it completely shattered my heart. I couldn’t stop the doctor (we needed to see if he had strep), and I couldn’t calm my son once his snowball reactions started. I stood by feeling completely helpless.

Sometimes I worry that people just view my son as a spoiled, bratty kid. To an onlooker who doesn’t know us, my son doesn’t look any different from a “regular” kid. But he is. A child (or person) with sensory challenges feels things differently than most people do. A swab of his nose isn’t as simple as it would be for you and me. As his mom, I constantly feel like I’ve failed my son because I can’t always prepare him for every possible oncoming scenario. I do my best to help him through, and to give him all the details I have, but I can’t predict what comes next. As he gets older and older, anticipating what could happen gets more and more difficult.

Courtesy of Lee Hayden

If I had known then what I know now, I wouldn’t have kept trying. I hate that I continued to attend those classes for as long as I did. I stupidly thought the more I exposed him, the better it would be, and that he’d “get over it” in time. The truth is, he won’t.

I’ve become, what I like to call, very “sensory sensitive.” I’m always super tuned into my surroundings and I try to anticipate any possible changes that could occur at a moment’s notice. I am constantly on high alert to try and protect my son from getting upset. As you can imagine, living like this is beyond stressful. When I look at my two other children, I’m overwhelmed with guilt. I worry that because of my preoccupation with my oldest son that my two younger kids may be missing out on their own lives. Even my 2-year-old daughter now knows to remind her big brother not to cover his ears when she sees him starting to get over stimulated. I love that she is tune into her brother’s needs, but it’s still heartbreaking.

Courtesy of Lee Hayden

Even though we have a clear name and diagnosis for my son’s delays, it hasn’t made our lives together easier. So many of the things my son has issues with are things that other “typical” children love. Once, when my son was about 1-and-half years old, we went to a local mommy and me playgroup so we could socialize with other parents and kids in the neighborhood. It was a casual setting — everyone sat in a circle singing songs, reading books, and doing crafts together — but my son shrieked like he was in agony the whole time. I was mortified — they were all songs that we used to sing together at home! But I didn’t know what was wrong. So I kept taking him, thinking that things would get better as he got more comfortable. If I had known then what I know now, I wouldn’t have kept trying. I hate that I continued to attend those classes for as long as I did. I stupidly thought the more I exposed him, the better it would be, and that he’d “get over it” in time. The truth is, he won’t. And that’s OK.

Courtesy of Lee Hayden

I’ve realized that having a child with special needs is a live-and-learn kind of life. Whatever my son liked today may not be the same for tomorrow. So we always have to be ready for the unexpected. We live on our toes, ready to move and adjust and react. Though it’s been incredibly tough on me, I know that my son’s happiness is what matters most. If he isn’t ready for a haircut today, then we’ll go tomorrow. If he needs 30 more minutes to prepare himself, then we’ll wait. I’ve decided to just celebrate how far we’ve come, how much he’s overcome, and especially what we have conquered together as a team.

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I Adopted A Child With Special Needs & It Changed My Life In Ways I Never Imagined- Term life

“That’s cool that you adopted; I could never do it. I mean, you just don’t know what you’re gonna get!” The mom at the city play space lowered her voice to say the last sentence while I stood next to her, mouth agape. It’s not that I wasn’t aware that such sentiment existed; of course I was. I just wasn’t accustomed to total strangers blurting out comments on my decision to adopt a child mere moments after our introduction.

My mind reeled back six years earlier, to the memory of sitting on a flat, green futon with my husband, a mountain of paperwork in our laps. We agreed we both wanted to start our family through adoption, knowing that the need for loving parents for orphans was so great around the world. Although the decision to adopt had come fairly naturally to us, having to mark on a piece of paper the needs we would and would not consider was an emotionally grueling process. Who wants to turn down a child who will need heart surgery?But who can afford to pay for heart surgery? That evening we finally agreed on two stipulations: no older children, and no children with special needs. Those might be things to take on in the future, we reasoned, but as a young couple with no parenting experience and very little expendable income we didn’t feel confident accepting more challenges than we were equipped to handle.

But the day we walked into that little Ugandan orphanage and held our son for the first time was the most surreal day of my life. He was almost 10 months old and he was beautiful: big brown eyes with eyelashes that curled practically back to his eyelids, plump little lips, no teeth, and a tuft of coarse curls in the middle of his head. I had never before held anything so incredibly precious.

Courtesy of Shannon Evans

We had received his picture via email three months before and had copied and plastered it over every inch of our home. Every single day we waited for news of the scheduling of our guardianship court date (which would give us the green light to buy plane tickets and enter the country), or at the very least, for an update on our son. Our Alyosha. Even before we met him, we loved him. But holding him in our arms was something completely different; it was like a new and an old love both at the same time. We were strangers, but we were family. We were awkward together, but we belonged to each other.

We learned that to parent a child with special needs is to become an advocate, because the professional expert you’re expecting to swoop in and give you all the answers doesn’t exist. You’rethe expert, but you have to claw your way to the title.

Although we had specified “no special needs” in our paperwork, we understood that it’s rare for institutionalized children to not have some form of developmental delay. Infants our son’s age typically need several months in a healthy family to catch up on developmental milestones due to the lack of maternal care and one-on-one attention that babies need to thrive. My husband and I arrived in Uganda prepared for that. Yet by the time we laid our heads down on our pillows that first night, we knew we were facing a much deeper well.

Courtesy of Shannon Evans

We asked each other questions, tried to piece together signs that we were seeing with what we knew of his history. The other babies his age and younger can sit up. I’m not sure if he can roll over. One of his eyes wanders. He is so silent; he almost never babbles. Have you noticed he doesn’t laugh? We knew he was malnourished before he came to the orphanage, but do you think he’s getting enough food now? Could he still be malnourished? We talked late into the night, and by the time sleep found us,we’d agreed we could very well be on the road of special-needs parenthood. But we never questioned whether or not we would still adopt him; in our hearts he was already ours. Our love for Alyosha and desire to protect him only grew fiercer. Yet at the same time, an unknown future hung over our heads.

Life for my family may never look the way it does for others, but I’m OK with that because of something I never anticipated: parenting a child with special needs has changed me.

The next five years were a marathon of seeking answers, one where we rarely got to stop and rest, lest the world crumble down over us and our little boy. We learned that to parent a child with special needs is to become an advocate, because the professional expert you’re expecting to swoop in and give you all the answers doesn’t exist. You’re the expert, but you have to claw your way to the title.

Courtesy of Shannon Evans

We swam in an alphabet soup of possible diagnoses Sensory Processing Disorder (SPD), Autism Spectrum Disorder (ASD), Attention Deficit-hyperactivity Disorder (ADHD), Post Traumatic Stress Disorder (PTSD), Oppositional-Defiant Disorder (ODD), anxiety, rickets, Trust Based Relational Intervention (TBRI), Occupational Therapy (OT), Speech Therapy (ST), Child-Parent Relationship Therapy (CPRT). Some fit, others did not, but we left no stone unturned. Not because we were greedy for a label, but because life was too hard for our child and he deserved better. From the records available from our adoption agency we knew just enough information about our son’s history to know he was at risk for an improperly developed brain (due to early trauma), but not enough to give the definitive answers we wished for. I felt deeply attached to him and experienced daily moments of tender connection, but I also daily carried the weight of his emotional volatility and inability to engage in society in a healthy way. I myself eventually began to suffer from panic attacks, anxiety, and hypervigilance. And through extensive research in the world of adoption, I came to learn that my reality had a name: secondary trauma.

I used to correlate the behavior of children to the aptitude of their parents, and was all too quick to mentally shove others into “good” parent and “bad” parent boxes. Now I know better.

As he’s grown, we’ve found our own rhythm and for us, it’s been a mixture of therapeutic parenting, medication, and accumulated experience in studying our kid as a unique individual. We’ve implemented Trust-Based Relationship Intervention as our primary parenting lens, but we’ve also learned to read our son’s cues and study him to let him tell us what he needs. We now know which social engagements simply aren’t possible, when to leave early or scrap our plans, when to stick to our plans for dear life, how to structure our home life in a way that helps him thrive, and what sensory strategies help calm him. But perhaps most importantly of all, we have learned to relax and enjoy him for exactly who he is. Life for my family may never look the way it does for others, but I’m OK with that because of something I never anticipated: parenting a child with special needs has changed me.

I never considered myself to be a judgmental person, but let’s be honest, does anyone? I realized how much I used to correlate the behavior of children to the aptitude of their parents, and was all too quick to mentally shove others into “good” parent and “bad” parent boxes. Now I know better. Before I became a parent I’d roll my eyes over a child who appeared out of control in a public space, assuming their mother was a lazy doormat. Then I became a parent and my child was always the one being out of control in a public space. I knew I was doing the absolute best I could, so I was forced to rethink my own paradigm.

When I’m exhausted at the end of the day and my son is running wild around the house, physically unable to process the words I’m saying to him or respond to any possible consequence I threaten him with, I’ve been horrified by my own instinct to resort to unreasonable punishment. I’d always believed I’d never be one of “those” people. But am I?

Now I cheer on other women who do things entirely differently than I do, having more perspective that those things matter so much less than I used to believe. I’ve come to realize that children are unique and complex human beings, and though different parenting approaches are important, they aren’t the only factor stirring the pot. I used to think that doing X + Y would always = Z; that children were some sort of math equation to be solved. Now I know that there a million ways to reach the same result: children who know they are loved and who can love others in return.

Courtesy of Shannon Evans

Parenting a child whose brain has been affected by early trauma and malnutrition has meant living under more stress than ever before in my life. As a result, my own emotional outbursts, the depth of my anger, and my lack of self-control have often shocked me. When I’m exhausted at the end of the day and my son is running wild around the house, physically unable to process the words I’m saying to him or respond to any possible consequence I threaten him with, I’ve been horrified by my own instinct to resort to unreasonable punishment. I’d always believed I’d never be one of “those” people. But am I?

Being Alyosha’s mom has also taught me to see the best in other people, to think more about what people are up against and less about what they’re doing wrong. He’s taught me to embrace the present moment and enjoy both life and people, even when neither are perfect.

I always thought I was a pretty “together” person. Now I realize that it was only because I’d never experienced the same level of hardships others have. In the past I’ve judged “incompetent” parents, looked at them as something less than human because of mistakes they’ve made with their children. But now I know most parents are doing the best they can with what they have and know. I know because I’ve been there. I am there.

But more than anything, I’m thankful to have accidentally become a special-needs parent because it has taught me everything about what it means to be family. We bear one another’s burdens, offer forgiveness and clean slates, advocate for each other, believe the best of each other, and never stop celebrating. I’ve come to learn that my talk of love is useless if I’m not willing to back it up with action; but that when I’m willing to fight for love I discover new and exciting parts of myself, like tenacity and strength. Being Alyosha’s mom has also taught me to see the best in other people, to think more about what people are up against and less about what they’re doing wrong. He’s taught me to embrace the present moment and enjoy both life and people, even when neither are perfect.

What I wish I would have told that mom at play group is that the unknowns of adoption have been its greatest gift to me. I wish I would have told her that I’m glad our family didn’t turn out exactly as planned, but that it’s richer and more beautiful than I ever could have dreamed. I remember well the days of fearing hardship, of wanting to avoid it at all cost, but life with Alyosha has shown me there is something greater on the other side of that fear — it’s love. ‌
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20 Messages for Anyone Who Feels Restricted by a Bipolar Disorder Diagnosis-SPD& Term life

While a bipolar disorder diagnosis can feel like a heavy weight to bear, there’s a difference between a label and a definition. While a label is a guide for treatment options and understanding, it cannot limit or change the person you are.

For World Bipolar Day, the International Bipolar Foundation is asking its community to look beyond their labels with this year’s theme “More Than A Diagnosis.” Their asking people with bipolar disorder to submit photos or videos with a message about what defines them outside of having bipolar disorder. People who do not have bipolar disorder can submit a supportive message.

In honor of this year’s theme, we asked people in the International Bipolar Foundation’s community to tell us one message they would send someone who feels restricted by bipolar disorder.

Here’s what they want those people to know:

1. “Don’t put pressure on yourself to be anything for anyone else. Just be true to yourself. Accept your limitations, and only push them for you.” — Karen Smith

 

2. “You are not defined by a diagnosis. You have an illness, you are not that illness. There’s so much more to you!” — Kristen Jordan Zeiler

3. “Believe all you see and half of what you hear. Life can be good and should be lived.” — Margaret Moore

4. “It does change your life, but it gives you a more compassionate understanding of suffering, it builds resilience, and the depth of empathy you feel can be used in a truly special way with those you choose to share it with.” — Lucy Edwards

5. “It changes you, for sure. It seems restricting at first. But, with time, you learn new ways around those restrictions. You learn how to be successful in different ways and through different paths. It changes your life, but it doesn’t stop it unless you let it. It changes how you see the world, and only you can decide if that is for better or worse. Love yourself for all that you are and through all you endure.” — Elissa Farmer

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6. “Be gentle on yourself, but don’t let your illness hinder you from setting your sights high. It will be difficult to get there, but you have it in you to realize your dreams! Having a mental illness teaches you to fight, and through it you become stronger. You got this!” — Katie Andrews Potter

7. “Be yourself! And work with your diagnosis. It doesn’t define you as a person. You may have had the condition longer than you knew, except now you can understand it and your actions. — Kaye Marshall

8. “Try your best to realize you are not your illness or your symptoms. Be OK with having bad days, and celebrate the good ones. Ask yourself what you would love to do if you didn’t have bipolar, then take tiny steps toward doing it anyway. I never thought I’d be able to continue my education, but here I am, two and a half months shy of a MFA in writing. Get out there when you can, and be gentle with yourself when you can’t.” — Trenda Marie Berryhill

9. “You are still the same you inside. A mental health diagnosis just helps your doctors to more easily create a path back to a healthier, more balanced you. Do whatever you have to do to get back to the real you. She’s still in there. She’s worth it. You are not your diagnoses or your traumas. You are so much more.” — Danielle Hark

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10. “For me, my diagnosis meant I wasn’t alone in the world anymore, that there were other people like me! It means I have the opportunity to get treatment and support for who and what I am. I am not afraid of labels; it is others who are afraid of labels. I am proud of who I am, my diagnosis means I have something to overcome, something to fight, and I do fight it, I live with it, and if others are afraid of it, that’s their baggage, not mine.” — Vicki Hope

11. “I would say take some time to grow. Learn every detail about your condition. Keep a journal. Bug your medication manager if your meds aren’t working. Look into your negative self-talk, and replace it with positive affirmations. Powerful.” — Susan Reed

12. “You might have to adjust your lifestyle so you can manage the bipolar disorder, but you are not alone. Find that inner strength to fight the illness positively. Pace yourself, and live at your pace.” — Hina Singh

13. “You will never know your limits until you try. You might even end up surprising yourself. If you make an attempt and it doesn’t work out, it’s OK. At most, you tried. It’s better than not doing anything and living with what-ifs. Each attempt is part of your journey, and the journey is always more important than the destination. Surround yourself with people who believe in you.” — G Mae Aquino

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14. “I was diagnosed with bipolar diagnosed as a teenager, and now I’ve been through two years of college and three years of university and I’m almost a qualified mental health nurse. So it will be difficult at times, but it does not restrict you from being what you want to be.” — Laura Louise Artell

15. “My mom told me from the day I was diagnosed ‘it’s a disease not an excuse.’  That I can do anything anyone else can do, I just have to work a little harder, which makes the end result that much better.” — Kimberly Dawn

16. “The disease is just as multifaceted as any individual is, so don’t feel boxed in by the labels and traits associated with the diagnoses. You’re more than the sum of your parts.” — Kelly Hainz

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17. “Your opinion is the most important opinion. If you believe in yourself and love yourself (when you’re ready to), that’s what’s counts. Never compromise your sense of self and don’t compare yourself to others. It’s not worth it! This is your journey.” — Melanie Luxenberg

18. “I find that first off, you have to accept yourself, love yourself, forgive yourself and seek assistance from your doctors and therapists. Take control of your own life and don’t be bitter to have this horrible disorder. Find your triggers and get rid of them if you can.” — Karlee Chavez

19. “It’s OK you feel this way. When you learn more about bipolar disorder and more about yourself, you will learn to feel less restricted. It will be OK, it will be difficult, it will be wonderful all at the same time. One day, slowly but surely, we will have the courage to move past everything that holds us back.” — Harleen Singh

20. “You may have ‘xyz’ but that does not mean that you are ‘xyz.’ Who you are is different altogether.” — Manda Raics

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WHY MY CHILD DOESN’T “LOOK” LIKE THEY HAVE SPECIAL NEEDS- Term life

I have two special needs kids. My son has autism, SPD, apraxia of speech, and a feeding disorder and my daughter has many medical complexities, a feeding tube, and gets four different therapies per week.

When it comes to my kids having special needs I have heard it all. But when it comes down to one of the worst comments someone can say about my kids it’s the variation of, “He looks fine to me.” I have heard, “He doesn’t seem to have autism,” “He doesn’t look like he has autism, ” “She doesn’t look like she needs a feeding tube,” and many other variations.

Because I and so many other special needs parents get comments like this, I wanted to write a post explaining why my kids “look” fine. I am passionate about this topic because I don’t think people realize what they are really saying when they say comments like this. Here’s exactly why my children may “look” fine to you.

4 Reasons Why my Children Don’t “Look” Like They Have Special Needs

1. Kids With Special Needs Don’t Necessarily Look Different
Just because a child may have special needs doesn’t mean he or she will look any different than you or I. A lot of children with special needs look just like any other average, typical child. This is called an invisible disability. There are many many adults and children who have invisible disabilities, our job is to be more aware of this and to be compassionate and inclusive.

2. What You Don’t Know or See
My children may not look like they have special needs, but there are plenty of things that many people don’t know or see. People don’t see the behavior problems, the sensory problems, the constipation problems, the hours it takes at each meal to get my son to eat, the times where he has a meltdown because we can’t understand what he’s saying, and so much more. There are plenty of things that people can’t see, but they are all a part of his special needs.

For my daughter, there are also many things that people can’t see just by looking at her. She has a feeding tube that might not always be visible and no one sees the hours of time spent at multiple specialist’s offices. I get told a lot that she looks great and that they don’t understand why she needs a feeding tube. What isn’t understood is that the reason she looks great is because of the feeding tube. That feeding tube probably saved her life and continues to do so every day.

3. What Happens at Home
People think my children “look” or seem normal because they see my child for a short time. In that short time they may be doing great. We’ve had family members come spend a day with us in the past and they tell us nothing seems wrong with our kids. The point is that they are only seeing on single day in their lives,  not seeing the whole overall picture.

My son has good days and bad days. Some days he does great, other days are very hard for him. Home is a safe place for him so the majority of the behavior and other problems he has happen at home. So just because you may see my child out and about for 10 or 20 minutes of that day and they look fine, doesn’t mean that they don’t have special needs.

4. Therapy
I saved this point for last because this is the most important to me and my family. We’ve been told that my son is a perfect example of a child who got early intervention. My son has been in therapy since he was 12 months old, my daughter started therapy at that the early age of three months old. They both have worked extremelyhard to get to where they are today and to what you see as “normal.”

You don’t see my kids “looking” like they have special needs because of the early interventions, because of our advocacy for them, and because of the hours and hours of hard work they did in therapy. I look back and remember where my son was three years ago, and I am amazed at how far he has come. I look at my daughter and watch her improvement in walking, eating ,and sensory awareness each and every week in therapy and I am amazed.

When you see my kids, please know that they “look” normal because instead of playing with friends they were in therapy. Because we advocated for them and spent hours dealing with doctors and insurance companies so they could be where they are today. Instead of going on playdates or hanging out with other moms I was working with our kids at home and taking them to therapy. Special needs parents sacrifice so much and my kids are an example of that.

My kids may “look” normal, but when I look back to see where they were, I am so grateful. I am so proud of my kids and so proud of how far they have come. The next time you see a special needs child that doesn’t “look” like they have special needs, I hope you remember that the reason for that is because of how far they have come and because of all the hard work it has taken to get that point.

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