10 Reasons Caregivers Should NOT Fear Therapy

February 1st, 2012

This blog was originally posted on The Gift Blog January 17, 2012.

Earlier this month, I was honored to sit down for a chat with the amazing Lorna d’Entremont. She asked if I could come on to The Coffee Klatch and talk about the issue of why caregivers should not fear therapy. The subject matter, and the host, are so close to my heart I just couldn’t refuse.

I had my initial fears with putting my oldest daughter into therapy. She was so affected by her sensory issues, and we’d tried so many different avenues, I didn’t want to put her through any more. But then I found the right therapist who created the best program for Jaimie and, well, Jaimie finally thrived.

After our chat, I was inspired to create a post on my own blog as an extension of my chat with Lorna, and I’d really love to share it with all of you. Caregivers, you should not fear therapy. It’s best for your child, for you and for your entire family. Embrace it, learn from it and watch everyone grow.

Enjoy!

You should not fear therapy because:

1) Your child learns about herself. Therapists are trained in their area of speciality and are able to teach your child about her specific condition. They are also there to show your child all the things she can do using the tools and strategies they teach her. Just remember, caregivers: They aren’t there to replace you; they are there to enhance what you’re already doing.Platform Swing 1

2) You learn about yourself. I’ll be honest with you. I was so not okay with someone coming into our home and working with my little girl initially. I wanted to help her. I had her in my body for nine months; I gave birth to her and I did everything humanly possible to take care of her. It hurt to see that another person…a stranger, essentially…understood Jaimie’s needs better than I did. It’s a normal human (Mama-gut) reaction, but you cannot allow these feelings to interfere with your child getting the help he desperately needs. By being strong enough to stand aside and allow that professional to assess, diagnose and work with your child, you are, essentially, giving him the gift of life again. The first time, you brought him into the world and now you’ll be giving him the tools to finally enjoy life in that world. That’s pretty powerful. You learn about your inner strength, courage and abilities going through therapy with your child. Believe me.

3) Your child’s condition becomes less powerful. Your therapist gives you information, guidance, resources and knowledge as your child goes along her therapy journey. All of these things help you see the condition as something living with your family and not controlling your family. Something is only scary if you don’t understand it. Once you know about SPD in general, and your child’s specific form of it, SPD doesn’t seem as big or daunting. You have the power to cope with it.

4) You begin to see your child for who he really is. So many of us refer to our kids as ‘my Aspie kid’ or ‘my child with SPD’, etc. For those of us who have been dealing with it for a long time, we understand that that condition is only part of who our child is. And therapy will help with that too. Initially, all we see are the sensory issues or the Autism because we don’t have the tools to see past it. Therapy not only teaches us about the condition but also pulls the child out from around it so we can finally say, “Wow! There you are!” I mean, caregivers have always been able to see her but now, finally, everyone else can too.Shaving Cream 001

5) You have a team behind you who can help. Once your child gets therapy or has an SPD Team (as we call them), you have back up. You are no longer alone along your journey because you have experts who can help get your child what he needs to function in his world. Never be afraid to talk to them, ask them questions or turn to them when you run into a wall. That’s what they’re there for.

6) You meet other families like yours. Guess what? You aren’t alone in this journey anymore. Nope. There are thousands of us out here just waiting for you to connect with. Visit the SPD Blogger Network or see the other blogs here on Sensory Processing Disorder Foundation website. Your therapist can also connect you with support groups in your community where you can reach out, or be reached out to, by families going through exactly what you are. Parent-to-parent support is so extremely important. The SPD Foundation has a parent connections program as well with ove 80 support groups in the United States as well as several international groups. Go to the Parent Connections page to learn more.

7) You learn about Advocacy and how to achieve it. One of the most important things I learned through therapy with Jaimie (and Xander) is how to advocate for my child in school, the community and in life. We need to understand that because most of advocacy is educating others. We need to make people understand what SPD (or whatever condition your child lives with) is, what it isn’t and how it interferes with your child’s functioning. Then we can teach others how they can be a part of our child’s life in the most comfortable and effective way.

8) Your child learns to advocate for himself. This is another powerful gift therapy brings your child. We are learning to advocate for him while the therapist is teaching your child what his needs are as well as what he needs in order to take care of those needs. While watching you advocate for him, while learning more about himself, he’s learning how to advocate for himself. The moment I saw Jaimie teaching others about SPD, about her sensory tools and not feeling any shame or embarrassment about that, I knew therapy was making a difference for her.

9) It teaches you how to be a ’sensational’ family. You already know this but when your child has special needs, the entire family is affected in some way. Therapy teaches us how to be a family and cope with this condition together. Not only do we learn what we can do to help the child with the needs, we also learn our individual attributes and important contributions to the family. This is extremely important for siblings.

10) You learn to love you. When you’re a special needs parent, you are vulnerable to becoming so absorbed with your child’s needs you forget your own. You forget you. Through your child’s therapy, you learn–as your child is learning–that those high needs are only a part of who you are. You are more than a ’special needs parent’. You are also a woman (or man), a wife (or husband), a friend, a talented __________ (fill in the blank). Therapy gives us courage to be all of these things.

These are only a few of the things I’ve gained from therapy. Despite initial apprehensions towards it, I came to the quick realization that the gains are worth so much more. One thing I’ll add at this point is that once you slowly gain knowledge, you are able to pass it along to other caregivers who were in the same position you were in at the beginning of your journey. How fantastic is that?

As I always say, “The sensational journey can be a long road with many hurdles to overcome. Be patient, stay strong, trust your heart and, most importantly, listen to your gut.”

CHYNNA LAIRD – is a psychology major, freelance writer and multi award-winning author living in Edmonton, Alberta with her partner, Steve, and their three daughters [Jaimie (eight), Jordhan (six), and baby Sophie (three)] and baby boy, Xander (four). Her passion is helping children and families living with Sensory Processing Disorder and other special needs.

You’ll find her work in many online and in-print parenting, inspirational, Christian and writing publications in Canada, United States, Australia, and Britain. In addition, she’s authored an award-winning children’s book (I’m Not Weird, I Have SPD), two memoirs (the multi award-winning, Not Just Spirited: A Mom’s Sensational Journey With SPD and White Elephants), a Young Adult novel (Blackbird Flies) and an adult Suspense/Thriller (The Gift to be released late 2011).

Please visit Chynna’s website at www.lilywolfwords.ca, as well as her blogs at www.the-gift-blog.com and www.seethewhiteelephants.com, to get a feel for her work and what inspires her.

Kids 6-17 Needed for Fun Brainwaves Study For SPD

January 25th, 2012

Is your child between 6 and 17 years old or do you know a child who is?

If so, he or she may qualify for a research study about brain development and sensory processing.DSCN3173_5181_edited-1

We are looking for typically developing children and children diagnosed with SPD between the ages of 6 and 17 to participate in a fun brainwaves study.

Receive a $50 target Gift Card* for helping us better understand Sensory Processing Disorder by participating in our research study. Plus, you and your child will get to see what their brain waves look like! How cool is that?

*$50 upon completion of the full study.

Call for details at (303) 794-1182.

The study is being conducted at the Sensory Processing Disorder Foundation in Greenwood Village, CO. The evaluation takes less than an hour, while the EEG study takes about 3-5 hours with breaks. We can work around your schedule, even on weekends.

The goal of this study is to understand how the brain processes sensory stimuli in typically developing children and children with sensory processing disorder. We use EEG to observe the reaction of a child’s brain while they watch a movie, listen to sounds, view images, and feel vibrations on their wrist. The information we collect could be useful to further understand the causes of sensory disorders, leading to better therapies to improve the lives of children and families who are affected.DSCN3195_5201_edited-1

Call (303) 794-1182 or click today for more information and to participate.

This project has been reviewed by the Rocky Mountain University of Health Professions Institutional Review Board (IRB). Any questions can be referred to the IRB Manager at irb@rmuohp.edu or 443.926.6243.

Thank you,

The SPD Foundation research team

Let’s Focus on the Positive

January 18th, 2012

My biggest fear for Madison since we began this adventure of Sensory Processing Disorder is that people/kids would notice her differences and make her feel bad. When she was younger it was pretty easy to explain some of her behaviors. If I got the look that questioned why I have not removed my child from the room or the roll of the eyes implying I was “too easy” on my child, it was fine. I would just let people assume it was me, being a bad parent, and she was just acting “that” way because I allowed it. As important it is for me to appear to be and in fact be a good parent, I would rather have myself judged than have someone judge her.madcdr11

A little over a year ago I noticed that Madison had some kind of obstruction on her face that resembled a mole or pimple. I treated it as such but nothing seemed to make it disappear. I knew if I could just find the right stuff it would go away because at times it seemed to get better. Then we went through the process of trying to see if it was related to something she ate. I then mentioned it at a doctor’s appointment and we were given a referral to the dermatologist. Through out these months I was shocked at how many adults would see her and ask me, in front of her, “What is that on her face?” Once I got over the shock of the rudeness, I stated it was a blemish. For some reason, people seemed fascinated with it and would offer various diagnoses and cures. Just so the ridiculousness of this is truly understood, the blemish was no bigger than a mini M&M. She started to get very upset about the blemish and began to wear her hair down so it fell in her face. I couldn’t believe my four year old was so hurt/bothered by comments from others that she felt she had to cover it up. I didn’t mind people asking or being curious but there is a way to do it. Most of my friends and people we know asked me what it was but not in front of Madison.

I bet you are wondering what it turned out to be. It is some type of cist that I can not pronounce or spell, and it was benign. She did need to have it removed and after a few months you can hardly tell it was there. No one who ever questioned what it was has shared that they have noticed it is no longer on her face.

Two reasons I shared that with you. The first, we as a society need to stop focusing on the negative and focus on the positive things. We are surrounded by horrible happenings all the time. It is on the news when we wake up, the radio in the car; you receive it when you log on to email, yahoo, phone or computer. When most people share current events it is about something bad that has happened. Is it because if we feel if we take note of the bad events and feel bad for others, then maybe it won’t happen to us? I know it is easier to find the negative topics but we have to try to find more positive things so we can stay more positive. One of the best stories I heard over the holidays that made me feel really good about us as a society, was all those everyday people who paid off strangers lay away bills. That was amazing beyond words.

The other reason is that Madison will start kindergarten in September and I am not sure how she will do and how others will react to her. We have had a great preschool that have been so understanding, and accommodating. In Virginia, we go to Kindergarten all day and by the time she does the bus she will have been up and going and beyond over stimulated for a minimum of nine hours. Whew!

I have my letter all ready and know what I am going to say to the teacher but I still fear for her. If adults can be so critical about a blemish on the face how are kindergarteners going to react when they perceive her to be overacting to a situation?

I know I will always worry about her and fear for her, just as I do my other kids. I just wish I didn’t have to. This is when I am truly thankful that she has the personality she has, no matter how crazy it drives me!

AMY BORNHOFT lives in Virginia with her husband, son, and twins (boy and girl). She works for Soulcial Solutions, developing new business and Child Development Resource Center, raising awareness and funds. She also facilitates a support/resource group through Parent Connections at the Sensory Processing Disorder Foundation. She would like for readers to identify with her families experiences and realize they are not alone. She also hopes parents will open up about the positive and negative impact Sensory Processing Disorder has on their lives.

Carol Kranowitz Dedication

January 12th, 2012

Most of you in the world of Sensory Processing Disorder (SPD) are very familiar with Carol Kranowitz, author of the Out-of-Sync Child and Editor-in-Chief of SI Focus Magazine. Carol is a long-time friend and supporter of the Sensory Processing Disorder Foundation and we would like to share with you our special dedication to Carol for her work on behalf of the Foundation and for all the families she has touched.

Board members Lucy Miller, Carol Kranowitz, Katy Miller, Marla Roth-fisch, Ty Kasperbauer, Bill Whalen, Tim Hoyman

Board members Lucy Miller, Carol Kranowitz, Katy Miller, Marla Roth-fisch, Ty Kasperbauer, Bill Whalen, Tim Hoyman

As a music, movement and drama teacher for 25 years, Carol observed many out-of-sync preschoolers. To help them become more competent in their work and play, she began to study sensory processing and sensory integration (”SI”) theory. She became skilled at identifying her young students’ needs, developing activities to improve their participation in the classroom and guiding them towards early intervention services when needed. Today she teaches parents, educators, and other professionals how sensory issues impact everyday life and recommends activities for addressing these issues at home and school. She is best known for her book, The Out-of-Sync Child. Her latest book, co-authored with Joye Newman, is Growing an In-Sync Child: Simple, Fun Activities to Help Every Child Develop, Learn and Grow. Carol was also on the Board of Directors for the SPD Foundation from 2006-2011 and is currently serving on the board for the STAR Center, our partner treatment facility.

As an educator, Carol recognized the need to help sensational kids in the classroom, and as her knowledge and understanding of SPD grew, she became a resource to millions of people. She is, and will continue to be, an advocate and support for SPD through her many books and speaking engagements. Carol has played a huge role within our small organization; helping to advance treatment, research and education in SPD.

We are indebted to Carol. Her generosity and commitment to the mission and vision of the SPD Foundation has been unending. She promotes the work of the Foundation at all of her speaking engagements as well as being featured at our Annual International Symposiums. She has been an active member of the Foundation Board, participating in regular meetings, and is a major donor.

Carol Kranowitz Dedication

Carol Kranowitz Dedication

We all enjoy a visit with Carol and last December 10th, 2011 was no exception. As a token of our appreciation, on that sunny Saturday morning the Sensory Processing Disorder Foundation dedicated our Sensory Space Lab to Carol Kranowitz. Many board and staff members were in attendance for a short ceremony. Carol was taken completely by surprise, thinking she was just touring our new offices. With tears in her eyes, she was speechless, humbled and honored by the recognition and acknowledgment. We are so privileged to know Carol and so grateful to her. Thank you, Carol for your years of service, on behalf of the SPD Foundation, STAR Center and all families living with children with Sensory Processing Disorder.

Seize the Moment!

December 28th, 2011

My boys are awesome! I had to start by saying that. As parents we tend to concentrate on the struggles, and we sometimes forget how amazing our kids really are and how much progress and efforts they make every day. We have two boys, both diagnosed with Sensory Processing Disorder. Although there are some similarities, their SPD manifests completely opposite to one another most of the time. If I had to choose one subtype for each one, I would say that I have a sensory avoider and a sensory seeker…. FUN right? The daily challenge is finding that middle ground and teaching them to understand each other. The good thing is that they are inseparable, but there are definitely moments in which they must be apart.Arm in arm

My oldest son was diagnosed with SPD in 2007 when he was almost 5 years old. Since then, I’ve learned to see the world in a whole different perspective. When I first heard about SPD, I was completely clueless. I felt lost, I felt alone, and extremely sad for him because it wasn’t something that could be fixed with mommy’s kiss. None of it made sense! That was not the way we grew up, it was not what we expected, and we couldn’t comprehend it. I cried many times, and spent sleepless nights looking for answers and thinking of ways to help him overcome his condition. I decided to dive into the SPD world, full force, whether people understood it or not. I was determined to learn and understand as much as I could about SPD, so I researched and read all that I could that was related to SPD. But also, I had to trust my mommy instinct because nobody knew my son better than I did. With time, I was finally able to see the world through his eyes and how challenging it could be for him. Luckily, I have been blessed with having a stronger bond with him that we’ve ever had.

My youngest son was recently diagnosed last September, but I’ve always known. We just didn’t have the “label”. All his behaviors were telling us that there was something different about him, but since he was so opposite to his brother, it was easier to discard it and think of it as “typical” (as everyone else called it too). But again, my instinct told me otherwise, and little by little I started noticing more and more sensory seeking behaviors and how he also needed our help. My husband and I were already applying the techniques and sensory diet we learned with our oldest son’s OT and psychologist. We tried to make things standard across the board with both of them to avoid additional conflicts. However, we still had to make additional adjustments because he needed a lot more input than he was receiving. It was exhausting at first. After a few weeks, we started seeing significant improvements at school and at home. So we knew then that we had make the right decision and that we were on our way to success with our little one too.Boys Laughing Whispering and Telling Secrets

Both of them have come a long way. My oldest was a boy who at first was considered oppositional, a jealous brother, possibly autistic. He exhibited OCD behaviors, was a picky eater, had anxiety, had tactile issues, was extremely sensitive, suffered from night terrors, had problems interacting socially, didn’t like to participate in PE class, didn’t enjoy birthday parties, and so on…Four years later, the story is different. We all know he has SPD. Even he understands his sensitivities. He is learning to be flexible and let go of that control (an ongoing learning process). He has many friends. He loves PE and participates in every Field Day at school. He wants to go to his friend’s birthday parties but recognizes when it’s time to leave because he’s getting overwhelmed. He is in the honor roll, and even participated in the Spelling Bee this year. My youngest is our “bouncy” boy and my sunshine. He was like the energizer bunny, always on the go. He was constantly bumping into things and other people. He would hurt himself but would not complain. He couldn’t tell when he was tired, had trouble falling asleep, had sensitivities to smells and certain textures. He got depressed when he started pre-school, exhibited anxiety, and at Kindergarten he had problems concentrating and completing his work. Homework was a challenge, and so on… After only a few months of occupational therapy and making adjustments at home, he sleeps better. There is no more bed-wetting. He has learned to use the heavy belt for homework. At school he is completing his work without any issues. He is learning to take breaks and do heavy work when needed. He is not bumping into people or things as much. He is not screaming incessantly as before and he finally learned to ride his bike without his training wheels.

I told my oldest son I was writing an article for other parents, and that I needed his suggestions. I was really curious as to what he had to say. He said to me, “Mom, you could write about my hiding place, where I go to feel safe when I don’t feel good. You can suggest to the parents to do the same for their kids.” I told him that was a great idea, but then he continued, “You could also tell them to get bean bags, or how I go in the hammock and wrap myself in, and start swinging…” So I asked him, “Why would you want me to tell them about all that?” He replied, “I don’t know mom. I just know it helps me!” At such a young age (he is 9 years old), I’m so proud that he is able to identify things that he could do to help himself, and also, that he wants to share it with other people. Moments like this are precious and priceless, and we have to recognize them as such.42-15635367

I know our journey isn’t over and as time goes by, I’m sure new challenges will come our way. However, I want to savor all the steps they make in the right direction. I need to celebrate every little success, and focus on what’s important. If I only look at the long road ahead, I would miss out on so many wonderful things they have accomplished along the way. Most people may not understand why it is such big deal or why I get so excited and emotional when I talk about my kids and how much they have accomplished. I know they don’t have a clue what we go through every day, and sometimes I may try to explain it to them. However, I prefer to concentrate on doing what’s right for my children. Having kids with SPD has truly been a challenge but mostly a blessing I’m grateful for. They inspire me every day. They have helped me learn a lot about myself, to be a better parent, to be a better person and to appreciate life without taking it for granted. Seize the moment!

REBECCA GONZÁLEZ is married and a lucky stay-at-home mom of 2 boys that have Sensory Processing Disorder (SPD). She spends her days doing the best she can to make life easier and more enjoyable for her family. Rebecca is an SPD Foundation Parent Connections Host and the founder of Let’s Talk SPD, which is a support group in South Florida for families with children with SPD.

I Have a Little Dreidel – an SPD Hanukkah

December 20th, 2011

MP900440329Happy Hanukkah!

It’s my kids’ favorite holiday, and we’re getting ourselves ready for eight nights full of celebration. This year, Hanukkah starts at sundown on December 20th, so we’ve had some time to change gears from eating Thanksgiving turkey to decorating the house with dreidels and menorahs.

For those of you who don’t know, Hanukkah is a celebration of the Jews’ victory in a battle to reclaim their temple from the Syrian army. In order to rededicate their temple, the Jews needed oil to light their “eternal flame” candle. They thought they only had enough oil to burn for one day. However, a miracle occurred and the oil lasted for eight days, giving the Jews enough time to make more oil. This is why the holiday is called the “Festival of Lights” and is celebrated by lighting candles for eight nights.

Any holiday can disrupt a family’s routine. One that is eight nights long can really change things up. My son, with all his sensory issues, can’t sit through an organized Temple Tots celebration or anything like that. So for a successful holiday, we’ll be doing all our celebrating at home, just like I did when I was a kid. And this year, we’ll be making our Hanukkah sensory friendly.

We’ll be celebrating the eight nights of Hanukkah with all eight senses – the seven senses of sight, smell, taste, touch, hearing, vestibular and proprioception, plus the latest sense in the world of sensory processing: introception. Here’s how our family will focus on one sense for each night:

Night 1: Proprioception On this night, we’ll light the first candle in the menorah and focus on our joints and muscles. This is a great way to start the holiday week, because this is what my son craves the most. Our activities are also a perfect way to kick off our celebration. To get him the proprioceptive input he needs, my son and I will first start by cleaning up the house – dusting and vacuuming and putting away all the toys. He’ll also be in charge of carrying the presents into our living room for that first night. This heavy lifting will help exercise all the parts of his body, and stacking the presents in piles for each family member will help with his muscle control. On this first night, we’ll start to make some traditional Hanukkah desserts to be cooked in oil, so I’ll have him stir up the cookie batter for extra sensory input in the kitchen.

All this heavy work and controlled movements will help us build up his sensory deposits for the rest of the holiday week. By starting off with proprioception, we’re setting ourselves up for a calm week ahead.

Night 2: Smell Because the Hanukkah holiday celebrates the miracle of the oil lasting for eight days, traditional Hanukkah foods are cooked in oil. This brings quite a lot of new smells into our house, since we don’t usually cook this way. My son is recently very sensitive to smells. To help with this, we’ll start off slowly by cooking one traditional food each night, plus at least one familiar and appealing smell. This night, we’ll make potato latkes (crispy potato pancakes) cooked in oil, and bake the pumpkin cookies from the batter we made the night before.

Night 3: Taste Just like with smell, there are a lot of different things to eat for Hanukkah. Traditional foods include potato latkes, applesauce, doughnuts, and cookies. My son is particular to certain textures, and latkes, applesauce and doughnuts fall into the category of “non-preferred” foods. I’ve learned enough over the years to not force him to eat anything he doesn’t like because it doesn’t end well. However, my hope is that by including him in the preparation of all the foods (helping measure out the ingredients for the latkes, mixing up the batter for the cookies) it will encourage him to try the different foods. I’m also not above a little bribery. Three bites of latkes may equal one pumpkin cookie. We’ll see how desperate we get.

Night 4: Touch One of our favorite activities to do as a family is to make Hanukkah decorations. After lighting the candles on the fourth night, we’ll sit down to make our own dreidels. While the song says “Dreidel, dreidel, dreidel…I made it out of clay”, we’ll actually use Model Magic to make our homemade dreidels and menorahs. I first discovered Model Magic last year at my son’s preschool. They used it instead of play dough because a child in his class had a wheat allergy. Model Magic is fantastic. It’s easier to use than actual clay and is great to work with. My son gets great deep pressure input from rolling out the Model Magic and the kids have fun mashing up the different colors. It will dry as hard as clay in 24 hours and cleans up much better than play dough. The decorations they create will last us through the rest of the holiday and into the next year.

Night 5: Vestibular The dreidel game is a great game to play during the Hanukkah week. My grandmother sends the kids their own dreidels every year filled with chocolate gelt (coins). A dreidel is a spinning top with four sides, each side displaying a different Hebrew letter. In the dreidel game, the chocolate gelt is put into a pile in the middle of all the players. Each player takes a turn spinning the top. The amount of chocolate gelt that the player gets depends on which letter is showing when the dreidel stops spinning.

My son loves the sensation of being dizzy, so he spends a lot of time twirling in circles in our house or on the swings. Since the vestibular sense is all about balance and spatial sense, this year I’ve made up the “be the dreidel” game. Instead of using an actual dreidel, I’ll have the boys take turns being a dreidel themselves. I’ve made large signs of each of the four Hebrew letters to spread out on the floor. Whichever one they touch (or stumble to) after I say “stop!” will be the letter they land on as the “dreidel”. I can only imagine how much amusement this will bring while providing my son the vestibular input he needs.

Night 6: Hearing One of my most favorite memories of my childhood Hanukkah celebrations is singing the prayers and songs as we light the candles. However, this is one of the reasons we can’t go to an organized Hanukkah celebration. Our last trip to temple was when my son was two and he stood on a chair and yelled at the Rabbi to “stop singing!!!” While the Rabbi wasn’t fazed, I was mortified and never returned. Not wanting to lose this tradition, we keep our singing at home now. This way we can sing “Hanukkah O Hanukkah” and “I Have A Little Dreidel” as loudly or as quietly as we want, or not at all. It helps keep the tradition alive in our family while being respectful of my son’s sensory sensitivities.

Night 7: Sight On this night, we’ll be lighting seven candles on each menorah, plus the “Shamash” or helper candle. This is the extra candle that is used to light all the other candles. Because my two oldest boys are old enough now to each light their own menorah, we’ll have 16 candles lit for the seventh night. These lights are mesmerizing for my son. Something about all those flickering flames just calms him. So we’ll spend quite a lot of time just staring at the candles in the middle of the table. It’s one of the few times during the holiday week that my son is relaxed enough to sit for an extended period of time. We’ll use this time to reflect on how the week has been going so far, or read more of the story of Hanukkah, or just sit quietly as a family.

Night 8. Introception According to SPD Life, interoception is “the sense responsible for detecting internal regulation response”. It’s how our bodies tell us if we’re hungry, thirsty, or if we need to go to the bathroom. It works in conjunction with the proprioceptive and vestibular senses to help us regulate our bodies internally. For our last night of Hanukkah, we can look at introception in a literal and figurative way. In the literal sense, on the eighth night, our bodies are full. We’ve enjoyed some great food and drink and had lots of activities to fill up all our senses. My son does his best job regulating his bodily functions when his sensory diet is varied and full. We’ve done that by focusing on different activities each night for each sense.

In the figurative sense, we are full of Hanukkah by this last night. All of our presents are opened, every spot in the menorah is filled with candles, and we’re ready to bring ourselves out of celebration mode and move into wintertime. It’s time to get ourselves back into our regular daily routine.

Just in time for Christmas vacation.

Happy Hanukkah Everyone!

I have a little dreidel

I made it out of clay,

And when it’s dry and ready

Then dreidel I shall play.” – I Have A Little Dreidel (traditional Hanukkah song)

ALYSIA BUTLER is a stay-at-home mom living in Massachusetts with her husband and three boys, ages nine, five and three. Her middle son has sensory processing disorder and was diagnosed with autism spectrum disorder in December 2009 at age 3 ½. Her youngest was also diagnosed on the autism spectrum in August 2011.  She currently writes at Try Defying Gravity (http://trydefyinggravity.wordpress.com), her personal blog recounting the joys and challenges of raising three boys. Her work has been published in The Boston Globe and Bay State Parenting Magazine, and in two essay compilations from special needs parent bloggers.  She has also published online at Mamapedia, Autism Speaks and The Thinking Person’s Guide to Autism. She is a monthly contributor to Hopeful Parents (www.hopefulparents.org) and is the editor at the SPD Blogger Network (www.spdbloggernetwork.com).

Twas the Night Before an SPD Christmas

December 13th, 2011

T’was the night before Christmas, when all through the house

Not a creature was stirring, not even a mouse;

The snack packs, arranged on the counter with care,

In hopes, on our journey we’d be well prepared.

The children were nestled all snug in their beds,

While visions of Chex Mix danced in their heads.

Ma in her hoodie, and I in my sweats,

Were to put away pillows and therapy nets.

When in the back room there arose such a clatter,

I ran at full sprint to see what was the matter.

When, what to my wondering eyes should appear,

But a puzzled old man buried up to his ears,

(In scooter boards, swings, and small colored spheres.)

Poor devil had brushed ‘gainst our therapy stash,

When it came down around him it made such a crash!

He recovered with grace, so lively and quick,

That I knew in a moment it must be St. Nick.

“What is all this stuff that you people collect? Are you Circus performers?”–the old man interjects—

“I came here with toys, for the boys and your girl

But looking around I think ‘what in the world?’

This room that would normally have children’s stuff

Is packed to the gills with equipment enough

To start your own CIA torturing session!

Tell me I’m wrong and you’re not!” (oh good heavens!)

My wife and I snickered and held out our hands,

And reassured Nick we’d had no evil plans.

“Our kids have a condition; they have a hard time—

They yell when it smells and they climb up the blinds.

At first we didn’t know just what to think,

But eventually found an OT who could speak

To their curious quirks and aversion to crowds

And toothpaste and barbers and things that are loud.”

3476_star center_lucy miller_20100210St. Nick answered back, “So, then they misbehave?”

We answered with, “Actually, no, they’re really quite brave.

Kids with SPD deal with all kinds of things,

Like big hugs, itchy tags, and loud alarm rings,

Or can’t get enough and spend hours on swings.

You see, our children are sensitive to all that life brings.

Yet do very well with a consistent routine.

But it isn’t bad behavior you see when they yell,

But rather a problem that is hard to tell.

Our kids work hard, at therapy and play

Spending hours and hours and hours each day

Trying to find ways to control their bodies,

And working hard not to look naughty.

But what they need is understanding, and some help along the way,

Because our kids amaze us, each and every day.”

3363_star center_lucy miller_20100210The old man looked surprised, at what we had shared,

Small children with parents who did what we dared.

To seek out help, and look far and wide,

Turning over each rock, letting nothing hide.

Until we found what they needed, what would make them feel whole,

For families like ours St. Nick couldn’t leave coal.

So, Nick with the bundle of toys on his back,

Frowned and thought, then sullenly sat,

(And mumbled to himself which took us aback):

“I’m quite at a loss, I don’t know what to give

To children who struggle while trying to live

In a world that is already noisy and bumpy

And twisty and scary and thorny and jumpy—”

Then he rifled again through his sack and reposed

While he tugged at his beard, and scratched at his nose

(And he huffed and he chuffed and he shifted his clothes).

Then with a wink of his eye and a twist of his head,

He drew the sack wide till the seams popped some threads,

dug in his hand and pulled out a small box

(with very small writing) –but before he could talk

He ungloved his hand to wipe soot from his eye

(Or was it a tear? Or perhaps a sty?)

3709_star center_lucy miller_20100210So he bid us farewell, and went back to his work,

He filled all the stockings; then turned with a jerk,

And laying his finger aside of his nose,

While giving a nod, up the chimney he rose.

I said to Ma, as she turned towards the tree,

“Who knows what St. Nick left us, we’ll have to see.

Yet we gave him something great, I say with fairness,

we sent him on his way with a new found Awareness.

Which is a gift to our kids, in a different kind of way,

Because when all understand SPD, that will be a new day!

Now we looked o’er the copious gifts left behind,

The tiny collages of paper and twine,

The moon-sparkled ribbons, the plastic that shined,

We spied the small box for the children to find.

“The best gifts can be pretty small–” Ma started then said,

“But our best gifts of all are still snuggled in bed.”

This Holiday season, you SPD Fathers and Mothers,

You cousins and nephews and sisters and brothers,

When you wake in the morning and throw off the covers

(And tear into presents while everyone hovers);

Do you think ‘Will I get what I wanted this year?’

Or realize ‘all that you need is right here!’

You might think it’s corny, but surely remember

Your children are better than any gift in December.

And in case you were wondering what Santa had stashed,

It may not surprise you; it might make you laugh,

“What did the children receive?” you may ask?

Well when the snowy chips are down……

even Santa gives cash.

Merry Christmas to all and to all a SENSATIONAL night!

By Patty Porch (with her husband) and Hartley Steiner

Hartley Steiner lives in the Seattle area with her three sons. Hartley is the award winning author of the SPD Children’s book, This is Gabriel Making Sense of School,and Sensational Journeys as well as the founder of the SPD Blogger Network. She is the contributing writer for the SPD Foundation’s blogS.I. Focus Magazine and Autism Spectrum Quarterly, among dozens of other online websites and blogs. You can find her chronicling the never-ending chaos that is her life on the blog Hartley’s Life With 3 Boys and on Twitter as @ParentingSPD.When she isn’t writing, or dealing with a meltdown, she enjoys spending time in the company of other adults preferably with good food and even better wine.

Patty Porch is from Central Illinois and is the mom of three crazy kids, two of whom haveSensory Processing Disorder. Her oldest son also has high functioning autism. A former English teacher, Patty currently stays home with the kids and blogs at Pancakes Gone Awry. Her other interests include baking (which her kids wholeheartedly support), reading (kids: not so supportive, unless constant interruptions count as support) and exercising.

Today is Colorado Gives Day!

December 6th, 2011

What is Colorado Gives Day?

Colorado Gives Day is an initiative to increase philanthropy in Colorado through online giving. GivingFirst.org is made possible by Community First Foundation, a Denver-based nonprofit and an online resource that features Colorado charities.

Why is it important to donate today?

  • -By donating today, December 6 through GivingFirst.org the value of your donation will increase
  • -A $1000 prize will be awarded each hour on December 6 through random drawings. A donor will be chosen, and the nonprofit associated with the donation will receive the cash prize!
  • -We will also have an opportunity to win $5000 for the most dollars raised or for having the most donors on this day
  • -100% of your donation comes to the SPD Foundation with no credit card fees assessed

In this season of giving, please consider a tax-deductible gift to the Sensory Processing Disorder Foundation through GivingFirst.org by clicking on the banner below.

cogivesday

Your donations can help us to

- Build the best sensory playground anywhere in the world

- Continue research into Sensory Processing Disorder

- Continue to educate teachers and physicians

- And so much more!

Playground example from Landscape Structures

Playground example from Landscape Structures

Have a peaceful holiday season and thank you deeply for your continued support of children and families.

Lucy Jane Miller, Executive Director SPD Foundation

Proud Participants in Colorado Gives Day, December 6

November 30th, 2011

As we remember 2011 and all of the children with Sensory Processing Disorder and their families who now have hope, we feel honored to have been entrusted with playing a meaningful part in their care.


CO Gives Day bannerThis year, the SPD Foundation is a proud participant in the Colorado Gives Day on December 6. GivingFirst.org is made possible by Community First Foundation, a Denver-based nonprofit and an online resource that features Colorado charities.

Here are the benefits and how it works:

  • -Donate through GivingFirst.org on Tuesday, December 6 to increase the value of your donation
  • -100% of your donation comes to the SPD Foundation with no credit card fees assessed
  • -A $1000 prize will be awarded each hour on December 6 through random drawings. A donor will be randomly chosen, and the nonprofit associated with the donation will receive the cash prize!
  • -We will also have an opportunity to win $5000 for the most dollars raised or for having the most donors on this day

In this season of giving, please consider a tax-deductible gift to the SPD Foundation.

Please donate through GivingFirst.org on December 6.

Playground options

Playground options

Your donations can help us to

- Build the best sensory playground anywhere in the world

- Continue research into Sensory Processing Disorder

- Continue to educate teachers and physicians

- And so much more!

Good news!

This past year, we have worked tirelessly to submit the FINAL report to the DSM committee – so that SPD can be included in the next edition of the DSM (the American Psychiatric Association’s Diagnostic and Statistical Manual). We expect to hear in the next six months and are hopeful that SPD will be included both as a feature of Autistic Spectrum Disorder and as a Novel Diagnosis That Needs Additional Research.

More Good News!

This year, thanks to the continued generosity of the Wallace Research Foundation, we have added several new scientific teams to our Scientific Work Group including groups from Baylor Medical School, Vanderbilt University, Mount Sinai in NYC and the University of Cambridge in the UK! Our research group consisting of 30 universities will be able to accomplish so much more.

You probably know that research shows Sensory Processing Disorder affects 1 in 20 children while 1 in 6 individuals experiences sensory symptoms severe enough to impact their ability to participate in everyday life. But did you know that 75% of these people have no other diagnoses? SPD is REAL and it is a valid diagnosis.

We appreciate your support more than words can say, as it permits us, the only full-time research and treatment facility, to continue our important work helping children and families with SPD.

Thank you deeply for your continued support of children and families.

Being a Sensational Buddy

November 23rd, 2011

My kids’ school is amazing for so many reasons. One of those reasons is how hard they work to make it an ‘anti-bullying’ school, where disrespect and violence of any kids isn’t tolerated. One of the ways they try teaching respect for others and eliciting understanding is through their buddy program.

This program pairs older kids up with the younger ones on small projects, reading, writing and music. I’ve always loved the idea but Jaimie was never keen on it.

Many of you know how hard Jaimie’s teacher, Mrs. P. tried helping Jaimie connect with others. We both thought the buddy program would be wonderful for Jaimie if she’d been matched up with the right person. It didn’t work out. In fact, it was a disaster. At that point, Jaimie’s sensory issues were so severe that even thinking about being around someone she didn’t know or having a ‘buddy’ pushed her right into overload. It wasn’t until this year, when she got to be paired up with younger kids in music class, that she warmed up to the idea.

Now, she’s the BUDDY; not the kid being BUDDIED UP and she loves it. I wanted her to share her thoughts about this because I think it’s so important for our kiddos to have that one person…that buddy…that takes the time just to be with them. It matters.

Here’s Jaimie!

“Okay, so I get to be a buddy this year! It’s fun because we get to be the big person teaching younger kids how to do things and to have fun and stuff. It’s different than doing stuff for Jordy or Xander or Sophie because I have to do that stuff for them. They’re my sisters and brother. But a buddy is sort of like a friend. And that’s kinda cool.”

“I don’t really remember the buddies from Kindergarten. I remember I had to have two of them. And I had to do math experiments with them and they never thought I did things right. I didn’t like talking to them and they sat too close to me.”

“Whenever it was buddy day, I was too scared to go to school. So Mrs. P. gave my buddies to other kids. It was the same in Grade One too. Nobody except Mama and Kathy* understood why it was so scary to me. But this year when they said I could be the big buddy instead, I thought it was okay.”

“It’s kind of fun having someone you get to teach stuff too. I mean, sometimes it’s okay with Xander and Sophie but they get so mad at me when I try to help them with stuff. When I’m a buddy, they don’t. I like helping people with things I like to do and I’m good at. And because I know what it’s like to be scared and stuff, I always try to be nice.”

“Being a buddy is fun. I think if I knew what a buddy was like in Kindergarten, I wouldn’t be scared. Mama asked me why I think buddies are important for kids with SPD. I think it’s because they help us make friends and they make us feel safe on the playground if we’re too scared to play and they don’t make us feel weird or anything. People think buddies are forced into doing it and are just nice to us because they have to be. But that’s not true. I think they like being a buddy, just like me, and they like making someone smaller feel better. Because when you’re smaller and scared and feel…different…sometimes someone being nice to you can be the biggest thing in the world. And that’s what I want to do.”

“That’s all.”

“By, Jaimie”

*Kathy is Jaimie’s occupational therapist (OT) and one of the few people in the world she trusts completely. Without Kathy, Jaimie would definitely not be where she is today. We adore and are indebted to her.

CHYNNA LAIRD is a psychology major, freelance writer and multi award-winning author living in Edmonton, Alberta with her partner, Steve, and their three daughters Jaimie (eight), Jordhan (six), and baby Sophie (three) and baby boy, Xander (four). Her passion is helping children and families living with Sensory Processing Disorder and other special needs.

You’ll find her work in many online and in-print parenting, inspirational, Christian and writing publications in Canada, United States, Australia, and Britain. In addition, she’s authored an award-winning children’s book (I’m Not Weird, I Have SPD), two memoirs (the multi award-winning, Not Just Spirited: A Mom’s Sensational Journey With SPD and White Elephants), a Young Adult novel (Blackbird Flies) and an adult Suspense/Thriller (The Gift to be released late 2011).

Please visit Chynna’s website at www.lilywolfwords.ca, as well as her blogs at www.the-gift-blog.com and www.seethewhiteelephants.com, to get a feel for her work and what inspires her.