Thursday, September 6, 2018

In The Spotlight ~ A Touching Interview With An SPD Mom


I'm so excited about today's In The Spotlight. It's been awhile since I've highlighted interviews with phenomenal people doing amazing things in the SPD community but this is one definitely I had to share.

Cameron Kleimo isn't just sharing with us today based on her professional, educational and therapeutic credits. She's coming here also as a sensational mom who has worked very hard not only to understand this confusing disorder, but to share her experiences with other families going through the same thing.

She has fantastic insight on ways to help our children cope, as well as to remind us to focus on ourselves so we continue to be strong enough to help those around us.

I found our chat both informative and touching and I am so pleased to be able to offer another valuable resource to parents raising children with SPD. I sure wish I'd known her during the initial learning process years ago.

Without further ado, I introduce Cameron to our readers. Please feel free to comment, share or ask questions of your own, and do check out her website.

Happy Thursday!
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CHYNNA: Welcome, Cameron. I am very excited to have you here with us and glad that you can squeeze us in around your very busy schedule. Why don’t we start with you introducing yourself to our readers.

CAMERON: I’m a mom of two incredible “differently-wired” boys who have sensory processing disorder, a wife to a nerdy surfer, a mindfulness expert, and a parent coach with a background in education and psychology. I teach a mindful parenting class in the San Diego area and I have a website, www.sensorymom.com that provides resources, validation, and support to parents navigating the bumpy and bewildering road of raising kids who have atypical development. When I’m not putting my mindfulness skills to the test with my spirited kids, you’ll find me surfing, singing, or podcasting.

CHYNNA: Wow! I’m exhausted just hearing your intro. lol Your focus and life changed completely after the birth of your oldest son. Can you tell us about your experience?

CAMERON: Oh boy, where do I start?! When my older son, H, was born, I was in the middle of getting my Marriage and Family Therapy license and was a little over halfway through my internship. My plan was to stay home with him for six months, then return to work part-time to complete my remaining hours toward licensure. I had my timeline all figured out and was planning on being able to start my private therapy practice by the time H was two-years-old. 

He ended up being born four weeks premature via an emergency C section. The way I usually explain it is, he came out screaming and never stopped! From the get-go, I sensed something was ‘off’. It became clear pretty quickly that I wasn’t going to be returning to work in six months. My entire focus became figuring out what was going on with H and how to meet his needs. When he was fourteen months, I tried returning to work two days a week. I lasted a month. There was still too much going on with him developmentally, and he was still waking up screaming every two hours throughout the night. 

I vividly remember the conversation I had with my husband when I realized I was going to have to sideline my career goals. I’d returned from work that day exhausted, both from the ongoing severe sleep deprivation and from a long day of seeing back-to-back clients. Our nanny greeted me and then informed me that H had cried for most of his nap. My heart sank. I’d asked her to call me immediately if he was in distress (the clinic I worked at was 45 minutes away, but my husband worked two blocks from our house and could have easily come home). At that point, I knew I had to put my career on the back burner. That night during dinner, I broke down crying to my husband. He was incredibly loving and supportive. We agreed that my career could wait and that H needed my full-time attention. I gave my notice the next day. 

For the next couple of years, I focused all my energy on being a mom (I had another son when H was two), understanding my boys’ sensory needs (my younger son has SPD as well), and learning as much as I could about sensory processing disorder. 

At some point along the way, I knew that I would eventually combine what I was learning about sensory processing disorder with my education and psychology background to help other families who were experiencing similar challenges. I didn’t know when I’d be able to do this, but I knew that when the time was right and I could come up for air, I would start writing about my experience. 

That time came about a year ago and I launched Sensory Mom this past January. 

CHYNNA: I can relate on a very deep level to many of the issues that had concerned you, as I went through similar worries and concerns with my daughter (and later on, my son as well), as well as difficulty getting her help. Did you want to talk a little bit about what signs you saw and what you did to attempt to help your son?

CAMERON: I knew something was ‘off’ with H’s development very early on. My first sign was his incessant crying. He cried All. The. Time. It was awful :( Our pediatrician deemed him ‘colicky’ and chalked it up to his premature birth. Another sign was that he wasn’t moving his body like the other babies in our Mommy & Me group. At our weekly meetings, I’d watch as the other babies reached for and brought their toes up to their mouths, rolled from side to side, used their arms to push their bodies up when they were on their stomachs. Hunter did none of these things. He screamed if I placed him on his belly, and when he was on his back, he laid there, stiffening up his body, then relaxing, stiffening, then relaxing. His movements seemed jerky and stiff. 

I brought my concerns up to our pediatrician, my husband, my parents, friends…everyone dismissed me. The general consensus was that I was an overly anxious new mother. What I learned from this, and something that I tell all the moms I work with, is to trust your instincts! No one knows your child better than you. If you think something is off, get it checked out. 

At H’s five month check-up, I brought videos in to show our pediatrician. After watching them, she conceded that yes, in fact, his movements did look a little ‘stiff’. She referred us to a pediatric physical therapist. Within fifteen minutes of the PT evaluation, the therapist explained that H had ‘sensory motor’ issues. We began weekly physical therapy and when he was eleven months old, we added in weekly occupational therapy. 

Some of the other early signs were: difficulty self-regulating, difficulty crossing midline, difficulty with bilateral coordination, a ‘funky’ crawl, delayed gross motor milestones, reflux, digestive issues, extreme ‘shyness’, extreme sensitivity to light and noise, difficulty staying regulated in dynamic environments (birthday parties, crowded playgrounds, etc.), and trouble making eye contact (turns out he has a severe vision impairment). 

CHYNNA: I think it was brilliant that you took videos to prove to your physician that something was truly wrong. I wish I thought of that. I just waited for my daughter to let loose in his office for him to ‘get’ it. lol Now, you’ve mentioned a lot about the importance of self-help and that, as stressful as it can be raising a sensory-sensitive child, if we aren’t well, we can’t create wellness in our children and others. Can you describe what led up to this realization and the steps you took to get there?

CAMERON: Oh boy, I could write an entire book about motherhood and its effects on my self-care journey!  Prior to becoming a mom, I had a history of anxiety and had also recovered from an eating disorder. I’d done a ton of work on myself, had been in recovery for many years, and had really dialed in my self-care. Everything started to unravel when I had my first miscarriage. I recently wrote a post about it. Following the miscarriage, I struggled with infertility, had several failed fertility interventions, a failed round of IVF which resulted in hospitalization and two weeks of being extremely ill, then an ectopic pregnancy. I finally got pregnant with H naturally, but by then, my anxiety was back in full force. It was practically a full-time job managing my anxiety throughout my pregnancy. I’d been traumatized by the first miscarriage-I found out during my first ultrasound at 10 weeks-so, every time I went in for a scan (I had many since my OB had flagged me as ‘high-risk’), I would become extremely anxious. 

I was able to relax a little during my second trimester and actually enjoy the pregnancy, but early in my third trimester, my OB detected an ‘abnormality’ during one of the scans. She sent us to a specialist who determined that everything was completely fine, but for 24 hours, my husband and I had to process the idea that our son might have a ‘debilitating physical deformity’. Needless to say, my anxiety sprung back into action. 

Not shocking that H was four weeks premature. He was also breech, so I had to have a C-section. The build-up of all of this, combined with his atypical development, threw me into a tailspin. All the self-care I’d so intentionally built into my life, went right out the window. I don’t even know how to describe myself during those first few years of motherhood. Saying I was a ‘mess’ doesn’t even begin to capture it! 

It took really hitting bottom to have a wake-up call and to start prioritizing my self-care. I did it first through meditation. I started taking ten minutes every morning to meditate. From there, the momentum began to carry me. I created a morning routine that included meditation, journaling, and yoga. I started taking walks after dinner and listening to podcasts on everything from parenting to spirituality to health and nutrition. I started making time for hobbies like singing, playing guitar, and surfing. Little by little, I started to feel like me again. 

My experience taught me that far from being a selfish act, it’s actually selfish not to prioritize self-care. My boys were certainly not benefiting from my being on the verge of falling apart. To all the moms out there who feel like they’re drowning but feel like good self-care is an impossible ideal, start small. Start with one thing you can do each day to care for yourself. Maybe it’s taking a ten minute long hot shower. Maybe it’s going for a fifteen minute walk after dinner. Or maybe it’s closing your eyes and taking three nice, long, deep breaths. Whatever it is, commit to doing something every day to recharge your battery. Your kids will benefit from this as much as or possibly more than you do.

CHYNNA: I can relate so much to all you’ve gone through and applaud your openness in sharing the struggles that you’ve overcome, and still working on. You are right, though. It’s all about balance and doing everything we can for us so we are better able to care for those around us. The work you’ve done to reach out to other SPD families is so impressive. What sorts of assistance do you offer to these amazing families?

CAMERON: Thank you so much, I feel the same about you! I get emails every day from moms who are struggling to understand their sensory-sensitive kids’ needs. I offer support and additional resources via email and I also do one-on-one coaching via phone or Skype. The moms I work with need someone to help them make sense of what’s going on with their child, to give them some structure around how to handle challenging behaviors, to guide them to the right resources and support, and to provide validation and encouragement. This is what I do. I also coach moms on how to dial in their self-care and how to create and stick to a self-care plan.

CHYNNA: I honestly think there are very few people out there who can offer a solid combination of mom experience mixed with the therapeutic side. You seem to blend these to aspects so beautifully. From your experiences, knowledge and connection with other parents trudging through the SPD world, what, in your opinion are the most important things we can do for our children?

CAMERON: I think the most important things we can do for our children are: To love and take care of ourselves. This means taking time to know ourselves, to understand what our triggers are from our own upbringings, to heal past traumas, to extend ourselves some grace (go easy on ourselves). To love our partners and prioritize our marriage. To replace our judgments about their struggles and challenging behaviors with openness and curiosity so we can really attune to what they are needing from us.

CHYNNA: That is phenomenal advice. I was so focused on my kids at that time I’d forgotten about the other important points you make here. Thank you. One of the gifts I have given my own sensory kids is the gift of being able to advocate for themselves. Which, as you know, involves not only helping them understand what is going on inside of them (as each child with SPD is unique and so are their symptoms), but giving them the words to help others understand and not just receiving empathetic, empty nods. In what ways have you done this with your own boys?

CAMERON: I talk a lot with my boys about how we are each unique and how there is no one else in the world exactly like us. At night, before they go to sleep, we do a group snuggle in my younger son’s bottom bunk. I always start off the snuggle by saying the same three things: I’m so happy I’m your mommy; You are the only you, and that makes you special; You are perfect exactly the way you are. We talk about how everyone has things that they are good at and everyone has things that are more challenging. I teach them that challenges are not ‘bad’, they are just opportunities for us to learn and grow.  I give examples of things I’m good at (yoga, listening, organizing) and the things that are challenging for me (building cool things with Legos, staying calm when the noise level reaches a deafening decibel, letting things be messy). I invite them to think about the things they are good at and the things that are challenging. Their answers are pretty funny. A couple of nights ago, H said, “I’m really good at balancing on one leg and I’m not very good at cleaning up.” 

I always tell a story during our group snuggle. I make up different ‘social’ stories each night based on things the boys are struggling with. I change the characters’ names, but only by one letter (i.e., Cameron would be “Mameron”). For some reason the boys think this is hilarious! So, if H had a hard time that day with self-regulation, and was grabbing toys away from his brother, the story would be about a little boy named “G” who kept taking toys away from his brother. I make a point to explain what both boys might have been thinking and include ways “G” could have helped his body get back in the ‘green zone’. For younger kids, using stories like this helps externalize what’s going on with them and helps them understand it better. 

H and I talk about OT as well. I’ve explained what it is and why he goes. In an age-appropriate way, I’ve explained what our nervous system is and how some of us have more ‘sensitive’ nervous systems. That it’s not ‘good’ or ‘bad’, it’s just how we’re made. He knows what his vestibular system is and what ‘proprioception’ is. I didn’t start explaining things in more detail until he was around five years old. Over the past year, he’s been able to understand a lot more and has been more curious. 

I think being open and honest is important and asking our kids questions, asking if they have any questions. And emphasizing that everyone has differences. Differences are not bad, they are what make us unique.

CHYNNA: I think what you’re doing, and continue to do, with your boys is awesome. You are giving them the understanding and tools to help others understand, and that’s so important. Do you have any advice for parents in dealing with their SPD child in school? How do you think we can get teachers and schools more on board? 

CAMERON: H just started Kindergarten, so we’re right in the beginning of our school journey. My advice is to talk to your child’s teacher as soon as possible. Write her an introduction letter (they have a great template on Understood.org) and tell her about your child. Set up a meeting in the beginning of the school year to introduce yourself and to talk about your child’s needs. 

I also recommend meeting with the school psychologist and/or the school reading specialist. I met with our school’s reading specialist back in May to figure out the best class placement for H. Based on my description of his history and his needs, she determined the teacher who would be the best fit. 

Keep in regular contact with your child’s teacher and, if possible, sign up to be a classroom volunteer. 

It’s shocking how few teachers are educated about sensory processing disorder. The more we advocate for our kids, the more the word will spread. Print out some SPD resources for your child’s teacher (some great ones on understood.org and spdstar.org).

CHYNNA: You are so right, Cameron. I felt very much on my own when my oldest started school. It wasn’t until she was in therapy and I had documents from the OT with suggestions that things started falling into place. These children can’t simply be left alone to their own defences, then taken somewhere else isolated from their classmates. It’s a learning process for everyone that parents needs to initiate. Great advice. I’d love for you to share what you consider on the top of the list for parents who are just beginning their SPD journey?

CAMERON: There are three things I wish I’d known at the beginning of my SPD journey and I would love to pass on to parents who are at the beginning of theirs.
1. Everything is going to be okay.
2. It’s not your fault.
3. This is huge opportunity for growth. 

Everything is going to be okay is the main message I want parents to internalize. It’s so scary at the beginning. When you don’t understand exactly what’s going on with your child, you don’t know how it’s all going to pan out. You have so many unanswered questions, so many worries and so many fears. I was consumed by worry and fear for the first few years of motherhood and it was horrible. When I think back to that time, I wish I could give my new mom self a giant hug, tell her to take a deep breath and just trust that everything is going to be okay, no matter what. 

The other thing that’s at the top of the list is to get support. Not just for your child, but for you! Reach out to other moms, join online communities, schedule your own session with your child’s OT to ask all your questions, seek out people who understand what you’re going through and ask them for help. You aren’t meant to do this alone and there are so many parents out there who understand exactly what you’re going through.

CHYNNA: Fantastic advice, Cameron. Unfortunately, we’ve come to the end of our lovely chat. I’m going to ask you a question I ask many of our guests here, and I can’t wait to hear your response. Please share with us any pearls of wisdom you have for our readers.

CAMERON: Let’s see…. Pearls of wisdom…. I have a couple of favorite quotes that help anchor me when I’m feeling overwhelmed. “If you want to change your child, change yourself,” and “Children need the most love when they are acting the least deserving of it.” Also on repeat in my mind are, “Everything is exactly as it should be,”  “I can do hard things” (that one is from Glennon Doyle of Momastery), and “I am a calm mom” (that one I have to say a lot!). 

I love looking at SPD as riding a wave. That analogy helps me so much. Just knowing that the water is going to get rough, the waves are going to get big, I’m going to get pummeled, but eventually things will become calm again, I will come up for air, and we will all be fine. 

One thing last thing…not really a pearl of wisdom, but something that has been very helpful for H in terms of his self-regulation has been making dietary changes. Specifically cutting out gluten, sugar, soy, and corn and following a keto-paleo diet.

He’s a very picky eater, so it’s been tricky. I know from the Sensory Mom community that picky eating is a huge struggle. The way we’ve been able to make progress in this area has been explaining to my boys that we have ‘good bugs’ and ‘bad bugs’ in our bodies and that the foods we eat feed those bugs. I’ve taught them about foods that feed the ‘bad bugs’ (sugar, processed foods, etc.), and foods that feed the ‘good bugs’ (lean protein, vegetables, healthy fats). This has been surprisingly helpful! It’s not that they aren’t allowed to eat any of the foods to feed the ‘bad bugs’, but they know that we eat these foods very sparingly because otherwise we get too many bad bugs in our bodies, then we get sick and feel sluggish. I’m about to do a blog series on gut health in which I’ll have lots of tips for readers on how to get their kids’ diets dialed in. 

The other thing that I think can sometimes get overlooked is sleep. H’s number one behavioral trigger is being tired. When he starts to get tired and feels fatigued, he completely falls apart. We see more meltdowns and more explosive behaviors. I know this is another common issue with sensory kids. Creating a solid bedtime routine, with an early bedtime (7pm seems to be the magic number), has been hugely helpful as has using the Dreampad. We just starting using this a few weeks ago and I can’t believe the difference! H had gotten into a pattern of waking up once in the middle of the night and again around 5am. He’s also been a very restless sleeper. I can hear him thrashing around during the night from our room. Since we started using the Dreampad, he’s not waking up in the middle of the night and he’s been sleeping until 6:15 am, sometimes 6:30am, which has been amazing! I’m so excited about his progress, I wanted to pass on that tip to your readers. We borrowed a Dreampad from our OT clinic to try it out first before purchasing one. We use the Slim Support model. It’s a little pricey, but not too bad. Right now it’s on sale for $119. 

My last pearl of wisdom is, as often as you can, celebrate your child’s wins, focus on what he or she is doing well, look for moments of connection, and when you feel yourself rapidly approaching the red zone, just breathe. Close your eyes, breathe, and say, “Everything is going to be just fine.”

CHYNNA: Those are some of the most wonderful and wise pearls I’ve heard in a while. And, thank you for bringing up the importance of good nutrition and sleep. I found both make a huge difference, both in my kids as well as myself. I am so glad you made time to join us today, Cameron. You are a delight and your insight is so valuable. Please come back again when you have more time. I’d love to hear about your take on proper gut care. Virtual hugs to you.

CAMERON: Thank you so much, Chynna. I’m so happy to be in touch with you and to find a kindred spirit. I love the work you’re doing and am so inspired by the ways you are helping so many families :)

Please be sure to check out Cameron on the following links to get to know her and the work she does to help other sensational parents.

Cameron’s Website/blog: http://www.sensorymom.com/

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