Intervention

Coping

Relationship Focused Sensory Treatment: We Shouldn't Just Treat Individuals

STAR Admin — Thu, 05 Apr 2018 21:35:43 +0000

Relationship Focused Sensory Treatment: We Shouldn't Just Treat Individuals STAR Admin Thu, 04/05/2018 - 21:35

I’m Carrie Einck and you know me from the STAR Institute videos on Sensory Processing Disorder (SPD) for adults and teens. Today, I’m sharing my story of what drove me to work with families dealing with Sensory Processing challenges and how I address sensory challenges in my own life.... (BUT don't forget to read Sarah's story too!)

I first learned about sensory processing in my occupational therapy graduate school courses. I remember the moment I learned that there were more than the five senses I had learned in elementary school. It was this “aha” moment, both personally and academically. Learning about the additional three senses (proprioception, vestibular, and interoception) helped make sense of why some of my hobbies (running, yoga, etc) were so beneficial for me. It also helped me learn about the “just right” arousal in order to study for quality instead of quantity. As I have studied and worked in settings where I assess and treat sensory processing concerns, I continue to learned and refine what my own sensory profile is. In general, I have learned that I seek olfactory (smell), proprioceptive, and vestibular inputs. I can accomplish this daily through using essential oils and also through the movement I receive treating individuals in the sensory gym, as well as, incorporating my own movement into my daily routine. I have found that rebounding, stretching, yoga, and running tend to have the most benefits toward my arousal. Contrarily, I tend to be somewhat sensitive to visual and auditory input. I have learned that I am more sensitive on some days than others, but my best supports for this are using natural/lamp lighting in my home and work spaces, wearing sunglasses when I am outside, and limiting the amount of time I am in noisy spaces.

Learning what best supports me now has led me to ask questions about what I was like as a child. To no surprise, I was the child who loved spinning myself quickly on the backyard swing, climbing all over every piece of furniture from the moment I could crawl, and always asking people to be quiet when I was sitting with them at mealtime. For me, this helps validate that sensory processing is lifelong and that strategies do work. By staying attuned to my own sensory preferences and challenges, I can better emphasize and strategize with my clients. I find that when my equilibrium is thrown off by lack of sleep and/or sickness, all of these sensitivities become heightened. I begin to imagine that these feelings may be what some of my clients may be feeling on an everyday basis.

I think my desire to work within the Sensory Processing Disorder (SPD) population stems from that initial “aha” moment I had in graduate school. Sensory processing makes sense for me on a personal and professional level. I have seen sensory-based interventions change lives and bring joy for the first time to entire families. Getting the opportunity to help create a program at STAR Institute for adolescents and adults with SPD and their families has been life changing to me. It is a service that has rarely been available for them in the past. I have seen how powerful it can be even after 30-40 years of no intervention. I believe it has saved lives, marriages, and relationships between parents and their child/ren.

I was led to work at STAR Institute when I learned the model was focused on entire families and relationships, not just one individual. I have been able to listen and work with moms, dads, siblings, spouses, and significant others, as well as, the individual. I find this so very important. When I was just starting elementary school, I learned that my younger sister was diagnosed with a chromosomal condition called Turner Syndrome. I remember the time my family got this diagnosis. It was scary and shocking all of us. As an older (but not very old) sister, I felt confused. I remember instantly feeling that it would be my role to be brave and helpful in any way that I could. I remember asking my mom what I could do to help and neither of us having any tangible solutions. Later on, my mom would go on to tell me that the doctors told my parents to “treat her as any other child and she will be fine.” The thing is, that this condition does change things for her and for our whole family. She would go on to receive daily painful growth hormone injections that led to very frequent meltdowns, panic, and fear from everyone in the family. As time passed, she developed differently emotionally, socially, and physically. As a sister, I continued to take on my role of learning what I could, trying to give the advice I could, but more importantly trying to be the strong and (hopefully) helpful one.

Reflecting on that experience, I wish that a family like mine could have had a relationship-based professional validating and helping our family system. These services are few and far between, but even the littlest bit of validation and understanding from a professional can go a long way. I hope to help entire family structures have the validation and understanding that neither me nor my family had throughout my childhood. I hope that I can be someone who can let families know that getting help and understanding can be pivotal not just for the individual, but for the entire support system around them. I am grateful for all the practice I have had in helping, empowering, and learning about myself as well as the neuro-differences we all have that makes each of us unique. It has helped me really understand, grow, and sit with each of the families I work with here.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Get the series now! Learn about five essential topics for adults and teens with Sensory Processing Disorder (SPD). This series is for individuals with SPD, parents, caregivers, and professionals working with the SPD population.

Presented by adult SPD specialists, Carrie Einck, MS, OTR/L and Sarah Norris, MS, OTR/L who have spearheaded STAR Institue's renowned adult and adolescent treatment program.

Carrie Einck OTR/L

Carrie graduated with her Master’s Degree in Occupational Therapy from the University of Wisconsin- La Crosse. She has extensive knowledge and training in Sensory Processing Disorder treatment and evaluation through participation in the Level 1 Mentorship program with the STAR Center and through participation in the SIPT Certification program. Carrie has also received training in iLs, Therapeutic Listening, SOS feeding approach and Handwriting Without Tears.

Before joining the STAR team, she worked in both the outpatient pediatric clinic setting and school settings in Chicago and volunteered abroad as an OT in order to further her understanding of occupational therapy from a global perspective. In Chicago, she also founded a community-based social skills group for kids of all ages and abilities that promote social skill building and motor development through a fun and motivating class taught on mini trampolines.

by Carrie Einck

Adults and SPD

Sensory Processing Disorder: It’s Not… Something You Outgrow

STAR Admin — Mon, 23 Oct 2017 20:56:59 +0000

Sensory Processing Disorder: It’s Not… Something You Outgrow STAR Admin Mon, 10/23/2017 - 20:56

The “Terrible-Twos”. Separation anxiety. Night terrors. These conditions are closely associated with childhood. They can cause misery to child, caregiver and family alike. They bring distress, angst, loss of sleep, and unfortunately, sometimes the need for professional intervention. What these childhood conditions generally share as a group is the tendency for people to “outgrow” them as they age. In general, we view “childhood conditions” as just that – issues we need only worry about with children. Sensory Processing Disorder (SPD) is also a condition most commonly associated with children. But is that accurate? Do children grow out of SPD, like the childhood conditions listed above?

SPD is not an “acquired” condition – meaning that a person does not suddenly develop SPD as the result of illness or injury. SPD is there from very early in life (potentially in-utero), and if it goes unchecked, can create a whole host of issues. For example, children with SPD often present with significant feeding issues that can impact their growth, physical health, bowel and bladder functions, and even brain development. We also know that sensory problems in childhood are correlated with an array of childhood psychiatric symptoms (e.g. anxiety, ADHD, ASD) and difficulties with social-emotional and behavioral functioning (Miller, Neilsen, Schoen, & Brett-Green, 2009). But what every parent wants to know is, “Will my child just outgrow this?” Unfortunately, the answer – like the condition itself – is complex. We simply do not have evidence that children can “outgrow” SPD if it is left untreated. In fact, there is evidence to the contrary. Research has shown a strong correlation between SPD symptoms in childhood and adulthood (Rosenthal, M.Z., 2013). But what does that mean, exactly? If SPD is left unchecked, without intervention, what can that look like in an adult?

One of the areas hit hardest by SPD is emotional functioning. It is often the driving force behind a family seeking help. Chronic emotional dysregulation in a child can impact daily functioning, social-emotional development, school performance, and family quality-of-life. The impact of SPD on emotional functioning has long been understood (Amthauer, Miller, Brett-Green, Coll, Schoen, 2004). Social and emotional responses rely heavily on the brain’s ability to make sense of sensory information. Inaccurate information from processing deficits results in aversive emotional reactions from which maladaptive behaviors grow. A person’s behaviors, and other people’s reactions to those behaviors, influence an individual’s sense of self (Rosenthal, M.Z., presentation, 2013). For a child, this may mean feeling out of control, “different”, or unable to trust themselves. These feelings may further develop into signs of anxiety or depression. For adults, the picture does not improve. There is evidence that links some mental health disorders with sensory over-responsivity (SOR), a subtype of SPD. Reports of significant SOR in childhood has been associated with adulthood depressive symptoms, anxiety symptoms, negative emotions, poor self-concept, neuroticism, and inattention. Adulthood SOR has been linked to higher incidences of depressive symptoms, anxiety disorders, introversion, negative emotions and poor self-concept (Rosenthal, M.Z., 2013; Kinnealey & Fuiek, 1999).

So, is that it, then? A diagnosis of SPD translates to an adulthood of social-emotional strife? No, of course not. Many factors go into both a child’s and an adult’s ability to improve and manage their SPD and the impact it has on their life. Some factors are obvious: a safe and supportive home life, proper nutrition, adequate sleep, early identification, and appropriate intervention. Others are harder to pin down: temperament (the hard-wired part of personality), genetic disposition, intrinsic motivation, and relationships with others are just a few of the “it” factors that impact how SPD presents itself and the effect it has on life as a person ages. And even though research in the field continues to grow and uncover some of the many mysteries of SPD, researchers have not yet discovered “secret sauce” – how to predict what exact constellation of interventions are needed at key moments in development. What we do know is that not addressing SPD and the problems associated with it can have significant negative outcomes.

As it stands today, many more resources are available to young children with SPD and their families than to adolescents and adults with SPD. The vast majority of sensory-trained clinicians are pediatric-based (usually that means 0-12 years). Services are most accessible through sensory trained Occupational Therapists (OTs) providing early intervention and school-based therapies. The field narrows considerably once a child ages out of these options, but narrow does not mean non-existent.

There is a growing number of sensory-trained therapists specializing in the adolescent and adult populations, and their unique set of needs. Exploration and use of sensory equipment is still common with these older populations. But instead of the focus being on play themes, imagination and games as it is with children, OTs put more focus on the adolescent and adult client actively engaging at a more cognitive level, with attention to understanding what SPD is, and bringing a client’s attention to what and how different sensory experiences affect them emotionally and physiologically. Biological markers such as heart rate, breathing patterns, and muscle tension are used to help a client become aware of how their system processes certain sensory-based experiences. Older clients work on recognizing their own sensory constellation, what is comforting, and what is dysregulating. Then, with an OTs guidance, they apply this knowledge to their own real-world occupations by developing plans and strategies for support implementation, compensations, and regulating sensory experiences. Treatment may occur weekly or on a consultative basis depending on the needs of the client. Although the current number of adolescent and adult sensory specialists is far lower than those of their pediatric-focused colleagues, the number is steadily increasing as awareness of the unique needs and presentations of adolescent and adult populations grows. And OTs are not alone. More and more mental health providers are recognizing the connection between SPD and emotional well-being and are seeking out training and consultation from sensory-based OTs.

Laughter. Contentment. Hope. Joy. These conditions are not closely associated with a particular age or developmental stage, but instead with an individual empowered through understanding and addressing their SPD.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

by Mim Ochsenbein, MSW, OTR/L

Adults and SPD

Toileting and Interoception – How to Help Struggling Children

STAR Admin — Tue, 25 Jul 2017 15:05:42 +0000

Toileting and Interoception – How to Help Struggling Children STAR Admin Tue, 07/25/2017 - 15:05

This is a follow up article to the blog post titled This Hidden Sense Affects Potty Training and Toilet Accidents in Older Kids.

Helping children who are struggling with toileting should be approached as more of a marathon than a sprint. A child with toileting issues may actually be struggling with a little known sensory system called interoception.

Interoception refers to your ability to perceive and understand your internal sensations, like hunger, thirst, the need to use the bathroom, feeling hot or cold, and fatigue. If you understand what you are feeling, you can act to meet your need effectively. Many professionals, including doctors and occupational therapists, do not know about this 8^th sensory system, and consequently children can struggle with toileting throughout their youth. Obviously, this can stifle self-esteem and social relationships.

Working with your child from a view of long term gains rather than quick fixes will help you stay patient as your child begins to learn about their own body in a way that they have previously been unaware of.

Before you begin any program focused on Interoception Intervention, all parents need to talk to their physician to make sure there are no other physiological issues that could be causing the problem, such as infections or issues related to hormones that release at night that help prevent night wetting). This should always be the first step. After that, if it is determined that this is an interoception issue, there are things that can be done to address the immediate need and to work on the overall issue.

There are 5 Steps of Interoception Intervention (adapted from Kelly Mahler):

1) Educate

2) Implement adaptions for reduced interoceptive awareness

3) Notice sensations

4) Give sensations meaning

5) Use interoception awareness to build related skills

1 - Educate

Parents: Learn as much as you can about interoception. Knowledge is power. Being better able to understand your child’s experience, an experience of the world that is different than most people’s, will mean you can help find more solutions while having more empathy.

Read up on interoception on the Your 8 Senses page (free)
Download Interoception: The Hidden Sense (free)
Check out these interoception resources from Kelly Mahler including a Facebook group (free)

2 - Implementing Adaptions

Often a child with interoceptive deficits will present with toileting needs requiring immediate attention while they work on interventions to improve their overall interoceptive awareness. Your child may need a few adaptations to what is currently being implemented. Here are some suggestions that can make a big difference. For adaptations geared more towards your child’s specific needs, please contact your Occupational Therapist.

Visual supports: Make a visual schedule of bathroom breaks (example: picture of bathroom sign related to child’s identified gender with “Bathroom Breaks: 9:00, 11:00, 1:00, 3:00” underneath)
Memorized rules: Always go to the bathroom 1 hour after drinking water; or always using the bathroom before leaving a place and when you arrive somewhere
Write and read social narratives: In story form or as a memo write out the process of when to use the bathroom as it pertains to that child’s daily schedule
Use Technology and Wearables:
- Cell Phone alarms and apps
- Watchminder: vibrating reminder watch (www.watchminder.com)

3 - Notice Sensations

4 - Give Sensations Meaning

5 - Use Interoceptive Awareness to Build Related Skills

These remaining three steps (steps 3-5) for Interoception Intervention are all areas that a family/individual should work on with a trained Occupational Therapist. It requires assessment of interoception and developing interventions designed for that individual. Specific interventions should be designed by and implemented with an Occupational Therapist trained in sensory processing. To work with a STAR Institute for SPD Occupational Therapist, please fill out the Child Intake Form or find a therapist in your area by using the Treatment Directory.

If you are looking for Sensory Processing treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Mim Ochsenbein, MSW, OTR/L

Parent experience

Interoception_Info_Sheet_7_17.pdf

File Attachment

This Hidden System Affects Potty Training and Toilet Accidents in Older Kids

STAR Admin — Mon, 17 Jul 2017 16:39:56 +0000

This Hidden System Affects Potty Training and Toilet Accidents in Older Kids STAR Admin Mon, 07/17/2017 - 16:39

I had a revelation the other day. I was talking with the fifth parent of the week who had just found our support group. She had just been told her child had “sensory issues” by a physician and given no further explanation. I started out by sharing the Sensory Processing Disorder (SPD) basics with her and what it can look like in a child. I explained that we had more than just the obvious senses in our bodies. We have hidden senses, such as all the information from our interoceptive system. She had an “aha” moment when I mentioned how hard it can be for our kids to potty train and sort out those internal signals provided by this “hidden” sensory system.

I often hang up the phone after speaking with new parents who are new to the SPD world, and I feel worried that I overwhelmed them with too much information or that I didn’t explain things clearly enough. On this particular night the mom had to go into another part of her home to talk to me about the difficult time she had with her child regarding potty training, bed wetting, constipation and other issues pertaining to her child’s gut. Her child had been within earshot and out of respect for him and his pride, she had to leave the room so he couldn’t hear what she was saying. As most of us know, this is one of the most embarrassing issues for our kids with SPD, especially as they grow older. The interoceptive sensory system has been given the nickname the “hidden sense”, thinking about this it dawned on me that it has a double meaning. It’s hidden in the sense we can’t see it and therefore aren’t always aware of it, but it’s also hidden because we don’t talk about it. The interoceptive system impacts private subjects that both kids and parents don’t want to speak to just anyone about.

The interoceptive sensory system is the internal talk in our body. For example, do you feel hot or cold, are you in pain, feel sick, have to go the bathroom? The “hidden” sense is what tells you those kind of things. In our SPD kids, this is the sense that tends to be at the bottom of the totem pole when it comes to developing and functioning normally. It’s only when all of the other senses are regulated and in check that our body is quiet enough to listen to what those internal signals are telling our brain. Therefore, it’s not uncommon for a child with SPD to experience problems with toileting. By the time the brain gets the signal that the bowel or bladder is full, it’s too late and an accident happens. In some cases the brain doesn’t get the message at all or doesn’t know how to make sense of the message.

The other day I was talking to our pediatrician who is amazing at identifying SPD in her patients. She mentioned that it’s rare to find an SPD child that doesn’t have some sort of problem with interoception. Oftentimes it results in low self- esteem with kids as they age. They can’t go to sleepovers as they have to wear incontinence undergarments at night instead of normal underwear like other kids. It can cause chronic constipation to the point that it stretches the bowel out and can cause hemorrhoids, anal fissure. Urinary tract infections can become common as well. This all can result in requiring the intake of fiber or stool softeners and painful bathroom trips.

Just stop for a minute and think about what it’s like to us, neurotypical people to use the bathroom. We don’t have to think about it because it’s so normal for us. You and I can do it in under a minute, especially if you’re a parent with kids running around the house! When you break it down though, it’s actually incredibly complex.

First, your brain gets the message from the bladder or bowels that you have to go and you head toward the bathroom. You often have the ability to wait a bit until you are back home, near rest stop or in the middle of something. We don’t develop anxiety over the feel of the toilet seat, the loud sound it might make when it flushes or the fact that you have to line your body up to sit on the seat and not fall off or or be scared that you might fall in. We don’t have to think about unbuttoning or unzipping our pants, we just do it automatically and without looking down. Once seated it doesn’t take any effort for us to put our interoceptive sense to work and tell our body it’s ok to “let it go”. Then comes the task of cleaning up afterward and we have the skills to spin the roll to get that right amount of toilet paper off. Once we determine we’re clean, the process reverses and we stand up, pull up our pants, zip or button and flush. We go to the sink to wash our hands which itself requires multiple steps. We do this many times a day without giving it much thought.

Now think about the entire process from the perspective of an SPD child it’s a huge problem. Imagine you might or might not get the signal that it’s time to go. If you do, it’s a flashing red light at this point and you have to run to get there in time. The next problem is the difficulty of getting your pants unzipped or unbuttoned. Think of having thick gloves on and trying to do this. Your vestibular sense is off and you are tactile sensitive so the toilet seat is hard and cold and that hole in the middle is HUGE! How are you ever going to sit on it and keep your balance? If you do manage to make it in time there’s the problem of getting your body to go. If you’re constipated that takes great concentration and effort and it may be very painful. Then follows the act of cleaning. You’re already in a panic mode with a self flushing toilet. What it if makes that horrible loud sound before you get up and out of the way? The sight of the toilet paper makes you gag along with the smell and you lack the motor skills to clean yourself adequately. You still have to get your pants back up and fastened again, and then to the sink to wash your hands and the list continues. It’s overwhelming to our sensory kids when you think about it that way.

Is it frustrating to parents when kids can’t potty train easily? Absolutely. Is it out of their control? YES! Well meaning people throw out advice like putting round cereal in the toilet as a targets and to use a reward system, but this advice frustrates me and I have to laugh. I wonder how many boxes of cereal SPD parents have dumped in toilets and are way past that by this point? Here’s what I can promise you. With a good sensory therapy plan in place and in action, this whole issue can be resolved. It may take more time than you’d like, but the SPD child will eventually get it.

I completely understand why none of us want to talk about this to others because we would never intentionally embarrass or humiliate our kids. That being said, know you’re not alone if you are dealing with this. It’s part of our world whether we like it or not. For parents who deal with this, the key is looking at uncovering the hidden sense as another step in patience, understanding, and empathy for our kids. It’s one more example of the uphill battle that our SPD children fight everyday, but they will overcome and so will you as a parent. Hang in there!

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish. Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.

by Meggin

Parent experience

Where To Turn After a Poor Parent-Teacher Conference

STAR Admin — Fri, 21 Oct 2016 21:36:20 +0000

Where To Turn After a Poor Parent-Teacher Conference STAR Admin Fri, 10/21/2016 - 21:36

It’s that time of year…. Parent-Teacher Conferences. Some parents love hearing about their child’s successes, but some parents don’t have that experience. Instead they receive a troubling report.

If you’re reading this, you probably sat in the tiny chair in front of your child’s teacher and absorbed the classroom your child occupies five days a week. You scoured the walls looking for your child’s artwork and reminisced on your own school days for a minute.

You were a little excited and a little nervous to get the scoop on how your brilliant child is excelling in school, but the teacher spent about 30 seconds on your child’s strengths and the rest was about how he’s struggling.

Struggling to grasp academic concepts…
Struggling to stay focused…
Disrupting the class…
Not performing well on tests…
Or even struggling socially…

Struggling just enough to be cause for concern and just enough to not make sense. You know your child is brilliant and you experience it at home, but your child’s teacher isn’t quite accessing it. It can feel like your child’s brain is turned off at school or amped up so high that they can’t learn.

Regardless of the teacher’s feedback you left the conversation puzzled and not really understanding how to get your child up to speed. Maybe this type of parent teacher conference isn’t new to you, but you’re not seeing changes and you weren’t given any direction on how to create change.

Here’s some valuable information for you to look into. Many children are experiencing sensory challenges that are going unidentified in schools or are being incorrectly diagnosed as behavioral issues, ADHD, or even autism spectrum disorder. Sensory challenges are 5 times more likely than autism spectrum disorder yet most professionals your child is encountering are not trained to spot it.

Sensory challenges just mean that a child’s brain responds to sensory input differently and some sensations may create an over-responsive action, like hitting back when being lightly touched. Other times a sensation like touch or someone trying to get the child’s attention may go unnoticed because the brain is under-responsive. There are many other variations of sensory challenges that can prevent your child from entering “the learning zone”.

Sensory challenges show up differently in each individual and most doctors are trained to respond to sensory concerns from parents as if the child will “grow out of it”. Teachers are rarely trained to understand what sensory challenges are so they are often looked at as behavioral issues or laziness. For many children, the sensory challenges continue and even get worse without treatment as they grow.

Once a sensory issue is identified, the child can receive the direction they need to enter “the learning zone” they haven’t been able to access at school.

If you think your child may be experiencing a sensory challenge check out the Symptoms Checklist and the Understanding SPD informational page. STAR Institute for SPD is equipped to assess children who are experiencing sensory challenges so you can be clear on how to get your child in the learning zone.

ADHD

Parent experience

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What I Didn’t Know About My Son’s Sensory Processing Disorder

STAR Admin — Mon, 20 Jun 2016 14:53:48 +0000

What I Didn’t Know About My Son’s Sensory Processing Disorder STAR Admin Mon, 06/20/2016 - 14:53

It was in April 2014 when I first learned about Sensory Processing Disorder. My son Brennan was 8 years old and finishing up 3rd grade. When I look back, there is so much that we have learned on this journey, which I am happy to share with those that are first starting out. What puzzles me the most is why we didn’t hear about this sooner? So many children struggle with SPD every day and yet I had no idea what it was. This is the one reason why I want to reach out to as many families as I can – to help and give as much information as I can and share what we have learned on our journey thus far.

I will first give some background on my son. He has a huge heart, is smart, has always done well in school and has amazing friends. Brennan has severe tactile discrimination and he also has dyspraxia, which we learned about later on. April 2014 was probably our rock bottom as a family and we had no idea why or what was going on, but it was pretty horrible when I look back. I just want you to know this to know that there is hope – lots of it!

Our mornings had turned into a battlefield – literally it was World War III. We would scream and yell at each other and Brennan would kick and fight me every morning. We would literally have to pick him up and put him in the car and he was not a small child. I am surprised to this day that the neighbors never called the police as it must have looked horrible. Brennan would drive to school naked and then I would pull over near school and the fighting would continue for him to put his clothes on. Brennan goes to a private school and although there is not a uniform, there is a dress code. Once I would finally get him to put on his clothes and drop him off (he was generally tardy) I would usually start my day driving to work in tears and feeling defeated. That was a normal day for us, which when I think back, I think how thankful I am for all of the people that have come into our lives and helped us and how much progress we have made.

The behavior was so bad that we started counseling for our son. Brennan loved his counselor and although it did not help him with his SPD it helped me learn patience with him. One day in April I was home sick and I sat in bed and watched the normal routine with my husband and Brennan fighting before school like I had done every other morning. It was not until that very morning that I was watching as an outsider that it hit me that the behavior was only surrounding clothing. I spent the entire day on the Internet researching and found an occupational therapist in our area and called immediately. What I will say at this point is that I did things backwards – we did not get Brennan an IEP but I am hoping that what I have learned can help some of you.

It was like I had found the answers to all of our prayers when I made that first call to the OT. I found my notes from that first conversation. It was funny because, although I am thankful for finally learning about SPD and realizing this was really a disorder, I was told that Brennan could be “fixed” with extensive therapy 3x a week and Wilbarger brushing for 3 weeks. It felt like my prayers were answered and I was willing to do anything for my child. I will say I felt guilty for not realizing this sooner and not taking him to someone sooner but the truth is I JUST DIDN’T KNOW. Once I realized it was a real disorder I talked with his school and they were amazing. I could no longer put him in dress code that would literally hurt his skin. It was crazy that this was why he was acting out and what was actually wrong with him. Once I knew about SPD things started making sense. He had so much anxiety about going to school because of the clothes he had to wear, which was why he was acting out. Brennan felt so relieved when I told him about SPD and when he learned about what was going on with his body. He is still very private about it and only shares it with his good friends but he is definitely happy to know why he feels the way he does and he is also proud of the progress he has made.

I immediately set him up for OT sessions 3x a week and I also set an appointment with his pediatrician with whom I have a great relationship, just to be sure we were on the right track. We started his OT, which was really good for his coordination. I learned how to brush Brennan’s skin, and I was going to brush it every two hours for three weeks while he was awake. We were also told to go see a Naturopathic doctor, which we did. I was willing to try everything and anything. We were told he was Zinc deficient and he started taking naturopathic Zinc and regular Zinc. I will say to this day the Zinc has definitely helped with his tactile issues. He stopped taking it at one point and it was horrible. It’s something worth looking into.

For the next three weeks we were on a mission. Every two hours that Brennan was awake
I would brush his skin. It didn’t matter what I was doing I would leave work and run over to his school and brush his skin. You can only imagine our disappointment when, after the time had lapsed, he was not “cured.” We then went and saw his pediatrician. I will never forget that conversation. She was hesitant on how an OT could diagnose him and how they knew he was Zinc deficient. At any rate, she sent him to a neurologist to be sure nothing was physically wrong with him. I went to this appointment and what I learned years later, I pray can help some of you now.

At that appointment, we went in and the doctor spent about 10 minutes with my son and determined that he should consider switching schools because he had a bad day with one of the boys at school. Mind you, my son loves his school and it is one of the best in our area. He had him walk on his toes, touch his head and that was about it. He said he should stay in OT, but other than that, it was a complete waste of time, but that was because he clearly did not understand SPD. What I have learned years later is that finding the right therapist makes a huge difference. Today, Brennan has the best neurologist, Dr. Marco, who specializes in SPD and he has made amazing progress under her care.

Brennan was in occupational therapy for approximately 9 months when I realized he needed something more. I had done a Facebook chat with Dr. Marco in October 2014 and learned a great deal about SPD. That is where I learned about Dr. Lucy Miller and her book Sensational Kids. I read her book in January 2015 and told my husband that I was bringing our son to Denver. I think he literally thought I was crazy but at this point my son was wearing one pair of basketball shorts and one shirt, and that was all. With Junior High around the corner I wanted to get him all the help that I could. I also got on the waiting list to see Dr. Marco at U.C.S.F.

In July 2015 we headed to the STAR Institute Treatment Center in Denver for 5 weeks. I will conclude with this; it changed our lives. I feel that is when our treatment started. I learned so much, but most importantly, how his brain works and why things happen. What is important to remember is that it is not something that will be fixed or cured overnight, but with the right doctors your child can make huge progress and your family can live a happy life. Our current OT actually trained at STAR Institute for Sensory Processing Disorder. I think it is so important to find the right doctors who actually understand SPD. Most importantly, follow your instincts. You can look on STAR Institute’s website and find OT’s in your area who have been through training at STAR Institute.

Although we did not get an IEP, I have so many feelings about the system and insurance, but will save all of that for a different day. I hope this has been beneficial and just remember, take a deep breath and know you are not alone. There is so much information and people out there who can help. This is the first step!

Visit the Treatment Directory to find professionals trained in the STAR Treatment Model in your area.

Or fill out the Child Intake Form now to start treatment at the STAR Institute in Denver, Colorado

Kelli Schmidt completed her undergraduate degree at the University of California, Santa Barbara before earning her Juris Doctor law degree from Lincoln Law School of San Jose. Ms. Schmidt is a partner in her law firm, Rocha & Schmidt and is a member of the California Applicants’ Attorneys Association (CAAA), where she currently serves on the Woman’s Caucus Committee and is on the Board of Directors. She is also a past President of the CAAA Santa Clara Chapter.

Outside of her law practice, Kelli Schmidt is devoted to her loving family, including her husband, two amazing young sons, Brennan & Blake and their 2 rescue beagles Lexi and Rocky. She is also fortunate to live close to her parents who spend quality time with the boys and loves being a soccer/football mom. Ms. Schmidt enjoys volunteering at her sons' schools and has recently been asked to join the PTPF Board at Brennan's Junior High for the 2016-17 school year. Ms. Schmidt is fortunate to have a sister living in Hawaii, and Kelli and her family love to travel to the Aloha State to visit her family.

by Kelli Schmidt

Sensory Processing Disorder Took Our Family to Holland

STAR Admin — Thu, 02 Jun 2016 20:45:42 +0000

Sensory Processing Disorder Took Our Family to Holland STAR Admin Thu, 06/02/2016 - 20:45

There is a story called “Welcome to Holland” by Emily Perl Kingsley that I always read to my expecting parents while I work as a prenatal instructor. The story talks about this perfect trip to Italy that you’ve been planning your entire life. The plane lands and as you exit the plane, the flight attendant welcomes you to Holland. Holland? That’s not where I wanted to go! You then realize that Holland is not a disgusting place, just different and you must stay, so off the plane you go. The point is to teach them that birth plans don’t always happen as written.

Within minutes of my second son, Jackson, being born I made a comment to the nurse that he had no stepping reflex. Noodle legs. Her reply was, “He’ll grow into it.” For some reason at the time, this seemed totally logical that you grew into reflexes. We took our sweet boy home, ready for another great adventure of watching him grow. Ready for another smooth “trip to Italy” that met every marker of the American Dream with a house, two parents that loved each other and two healthy children. What I didn’t know is that we had detoured to Holland.

Over the next few months, it became apparent that something was different about Jackson. He was extremely colicky, some days crying up to ten to twelve hours or more a day. The only ways to keep him from crying was to breastfeed, hold and keep him skin to skin. The advice immediately started rolling in saying I was spoiling him, overfeeding him, he had acid reflux, etc., etc. I took him to several doctors when he wasn’t meeting his milestones and I was told that he would catch up and that I was overreacting. One doctor suggested he wasn’t walking because he needed orthotics (the orthotic story is an entirely different blog for another day, but let’s just say it didn’t go so well). After being fed up with what our current city offered with services, we decided to move closer to where I was from and where we hoped more resources would be available to us.

Before we were even fully moved into our new home, I had an appointment with what was supposed to be a great pediatrician. The appointment lasted approximately ten minutes, as I was asked a few questions with no introductions and looking superficially at Jackson. It was finally announced to me that “something was wrong with him neurologically”, but he didn’t know what and would have to run some tests down the road as he was booked that day with appointments. I left in tears not knowing what was next. My son was almost two years old, had skipped crawling and still was not walking or talking. Was my son terminal? What was wrong with him?

I came home, hopped on the internet and contacted the local pediatric office in our new town. I literally scrolled through the pictures and profiles of the physicians in the practice and found a friendly face looking back at me, someone that looked like I would be friends with or call to have coffee with. I called and made the appointment. I knew I had hit the jackpot when I poured my heart out to her and explained how no one believed me and she responded, “You’re the mom. If you think something is wrong then I do too and we’re going to figure this out together.” I think I starved the room of oxygen with the sigh of relief that came out of my body. First stop was lab tests for “scary stuff.” She even called me at 11:00pm on a Friday night to tell me that they were all normal so I wouldn’t worry through the weekend.

In the meantime, we gained new neighbors, Janie and Matthew and we became fast friends. I had mentioned to Janie several times that we had struggled with Jackson to the point of taking both of us to get him dressed in the morning, constant meltdowns, the list went on and on. She talked about her son having Sensory Processing Disorder and asked if I had heard about it. She immediately brought me a copy of the Out Of Sync Child by Carol Kranowitz and I dove into the book. I hadn’t made it past Chapter 1 when I looked at my husband, Erich, and with tears and laughter all coming together, told him I knew what Jackson had. This is when I realized our plane had detoured to Holland.

We were appropriately referred for occupational therapy at a local pediatric clinic for physical and occupational therapy. Within a few months, Jackson was finally walking! However, as time went on through therapy it became clear that we were not really making any headway and that he needed something more. I had the privilege of meeting and speaking with Carol Kranowitz on several occasions. So what better resource? I called Carol and asked where we needed to go, as I was in momma bear mode on getting more answers. She suggested we go to the STAR Institute for Sensory Processing Disorder in Denver, Colorado. We spent three months in their intensive program where we learned so much. Again, another blog for another day, but I’ll leave you with the fact that it was the most amazing, life changing thing we could have done for Jackson.

Today, Jackson is an amazing 11-year-old young man that is more of a blessing than any words in any language can explain. Oh yeah, remember that Welcome to Holland story? It ends stating that once in Holland you purchase new guide books and notice that Holland has tulips, Rembrandts and windmills. Holland is beautiful. Yes, you still mourn missing Italy, but you realize that you must enjoy the journey you were given and blessed with. Jackson and SPD have taught us so many things, made us better human beings, better parents, strengthened our marriage, made me more empathetic, made me cry, made me laugh, made me angry, made me an advocate and founder of a non-profit to help other SPD families. Would I take the SPD away from Jackson if I could? Absolutely. Would I take away the journey to Holland? Not in a million years.

written by Meggin