The Road Not Taken

It’s been too long since my last blog post. After a few months of a hiatus, it’s like I’m starting over. Only this time it’s not all bad news. At least it shouldn’t be. Why then do I feel like the first verse of Robert Frost’s poem “The Road Not Taken” sums up what I’m about to write?

“Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;”

We’ve come to that point in the therapy world where we have to make life-altering decisions. One that affect us (financially more than anything) but affects “B” so much more. We’ve taken a 3 month break from food school. B’s therapist went on maternity leave back in October. I’m going to be completely honest here. I haven’t really been following through with her food program here at home, and to be honest she hasn’t really regressed. She also hasn’t made a ton of forward progress either. So it’s here we have to decide. Do we keep up with the program, or do we kiss her therapist for all her hard work and say goodbye?

Actually, lunch in the cafeteria has been fan-flippin-tastic! She knows when she needs to move and asks the lunch lady when needed. The rest of the time she tolerates the food and smells so much better than my husband and I ever imagined! At home, things are a different story. She continues to need the candle lit for various smells. She has to sit in the chairs at the table away from everyone else. She continues to have about 10 foods she’ll eat consistently. Of course, she has made small attempts to taste new foods (like the caramel apple cookie she tried at our family’s Christmas event). Oh, and after much reassurance, there was the time she tried the red/green salsa chips which tasted exactly the same as the ones she normally eats (she was totally thrown by their colors). However, we’re still stuck on the same 10 foods.

“Food chaining” is one of those terms you hear a lot in the “resistive eating” realm.  Food chaining is where you try to get your child to branch out and introduce new foods that build on the characteristics and properties of the foods they currently eat. For example, B eats Tyson chicken nuggets. Food chaining would be trying a couple of different types of chicken nuggets. Once she accepts those, you’d move to chicken fingers, then chicken strips, then chicken patties, and finally work your way towards non-breaded chicken. For resistive eaters, it’s often times more complicated than that. Especially those with sensory challenges on top of eating issues. B has issues with certain textures, tastes, and appearances; so, even the slightest difference in chicken nugget brands cause her to turn up her nose and refuse to learn about them.

It’s this challenge that puts me back on that road. I stare ahead. I wish I could take them both. I wish I could see years down the road. Which one equals fear-from-food freedom? Do we continue to pour large sums of money into this program that has given us positive glimpses into mealtime frustrations, or do we continue to let her grow, play, work on her sensory diet in hopes that she will eventually “mature” out of her fear of eating? Does one road lead to a lifetime of picky eating? Does the other lead to a love of food?

I know Robert Frost’s answer. Take the road less traveled. We’ve done that, and while it has given B some tremendous coping strategies; it still hasn’t led us to where we want her to be. However, without food school B wouldnt’ be where she is today. If therapy were free, this decision would be so much easier 🙂 I do plan on talking to her therapist about my concerns, but ultimately we (her parents) will make the decision on which road she’ll take. We only hope and pray that the road we choose is the better path for B’s future.

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Social Isolation

“Third grade. Everyone’s food in their lunches is disappearing. I am their target. I run out of the room crying when they tell the teacher I am the culprit. I hide in the athletic closet. I cry and wait until my 3rd grade teacher finds me, wraps me in her arms, and tells me everything will be okay.”

“Eight grade. I walk up to the front of the room and drop my math paper in the appropriate basket. I come back to sit down in my desk. The boy behind me pulls my seat out from under me, and I fall back on my derriere. I run to the bathroom and cry in the stall. I come back and sit in the principle’s office (attached to my classroom). I hear my teacher giving a commanding speech. I am not a doormat. I’m not to be treated like one. We do not walk all over her. Embarrassing moment # 936.”

These are my grade school/middle school experiences. Not B’s, mine. As you can tell, grade school wasn’t the most positive social experience for me. I never quite fit in (Not exactly sure why either. Probably because I moved to the school in third grade vs. kindergarten). I was the target of many cruel jokes. I had very few true friends. School was very socially isolating for me until high school.

Why am I telling you all this? I’m sharing my stories to identify another one of my greatest fears. Fears that I don’t want to project onto B. Fears that I need to work on and learn how to control. My 2nd greatest fear for B besides eating is feeling socially isolated from her peers.

I never knew how to handle the social situations. Instead of standing up to my bullies, I ran. I hid. I kept journals of my inadequacies. I don’t want B to go through the same isolating experiences I did, and with that I need to step back and ask my friends and family for help.

Tonight I told B a made-up story. She loves made up stories. She likes you to think you’re making them up, but she’s really telling you the details and you’re just retelling her the little tidbits out loud. This story she actually let me make up myself. It was about a turtle who lived on the beach. Marvin had lots of beach acquaintances, but very few close friends. Marvin felt lonely. It was after I made that comment that B came back with, “Sometimes I feel lonely too at recess when no one wants to play with me.”

I seriously go into “flashback” mode. My heart beats a little bit faster, my tongue gets tied, I rarely know how to respond to comments like this. I know I’m over-thinking it, but I remember how I felt in her shoes and don’t want to say/do the wrong thing.

Be went on to tell me that she asks the other kids to play, and they usually say, “No.” and she walks around the playground by herself. Is she embellishing? Maybe. Is she seeing things from a different perspective. That could be too.

I do plan on calling her teacher tomorrow and getting her take on things. B is extremely sensitive and tends to over-analyze things or see things differently. I remember when she was in preschool. She went on and on about how no one wanted to play with her, and she didn’t have any friends (This was the first week of school). I talked to her teacher who informed me that she was playing fine with kids in her class. Sometimes the kids were busy doing their own thing and didn’t want to stop what they were doing to go play with her. B perceived this as them not liking her. Ahhhh…my sensitive, old soul.

I know teasing/getting picked on is a fact of life for all kids. I just need to learn how to handle it appropriately without projecting my fears onto her and without going overboard. If any parents have any advice for me, please feel free to share. This goes for all parents. I appreciate any and all feedback more than you know  🙂

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Nervousness Never Fades

“Everyone had bologna around me at lunch today.” Spoken by our sensory, orally, and olfactory defensive 5.5 year old when she got home from school. I asked her how she handled it. “I plugged my nose.” While I’m proud of her for using her coping skills to ward off the offensive, I’m also a teeny bit worried that she’s not advocating for herself the way she should. I reminded her that she is allowed to ask one of the lunch ladies to move if she can’t handle the smell/appearance of certain foods. I’m not exactly sure how well it sunk in.

I have to admit I’m a little bit nervous. B’s feeding therapy that we’ve been a part of for the last 2.5 years will be run from home, by me, in about a month. B’s fantastic therapist is going on maternity leave from October through January. While therapy was only once a week and now only every other week, she still pushes herself further with her therapist than she does with me.

I’m a teacher. Teaching and instructing is part of who I am. I should be able to do this, right? I don’t know why, but this type of program intimidates me. Maybe its because I suck at cooking. Ask my husband about the time I started the oven on fire (dropped a hot pad in the oven trying to get dinner OUT). Ask B about the time she requested cookies for school and asked if “Daddy” could make them because mine don’t taste quite as good. I accept that my cooking/baking skills are flawed, but when food school encourages cooking with your child it becomes not only intimidating, but also tedious. *Insert fake smile here* I know I need to suck it up and encourage B to create, create, create. I have to say the other frustration is knowing that we’ll cook and bake, and 90% of what we make will go uneaten. I HATE wasting food (Blame the former generations for the comment, “Think about all the starving children in Africa!”). Food school encourages playing, talking, and learning about your food, but not necessarily eating it (until the child is ready). I can only eat so much; therefore that leaves a lot of scraps left over (and unfortunately we don’t have a dog).

I have to remember to introduce new foods while integrating the “still learning about” foods. I guess I need to make myself an organized list or something to keep  myself from losing my mind 🙂

Then there’s the process of introducing the new foods. We turn our foods into toys. We play games, we look at our foods like a scientist studying amoebas under a microscope. We smell them and even touch them when we’re ready. These thing happen if B’s having a good sensory day. If not, we may only complete step one: looking.

I should be able to accept the small baby steps. After all, I noticed even the tiniest of baby steps when I was teaching my students. I celebrated each and every success and milestone. Why then do I dwell on the fact that we can’t even get her to try a new type of chicken nugget or a new brand of cereal? We can’t send a closed-faced sandwich to school. It has to be open-faced. That she’ll only eat split top wheat bread. She will only look at a sausage link if it’s inside a plastic baggie. I get so caught up in the little things.

Don’t get me wrong, I know she’s made progress. It’s just hard to look back at 2.5 years of feeding therapy yet, she still doesn’t meet enough qualifications to graduate from the SOS food therapy program. My heart just breaks that I can’t make eating easier for her.

I sure hope that I can work with her as successfully as her food therapist has over the next few months. I’m going to try and blog about the journey as we work through it. I’m going to try and pick myself up, pray, and focus on my purpose. God picked me as B’s mom and saw me as one of her lifelong teachers 🙂

Psalm 32:8 “I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you.”

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Life is But a Dream

You know when you’re in a deep sleep dreaming that fabulous dream where the location is perfect, you’re in love with whatever or whomever you’re dreaming about? That particular dream from which you don’t really want to wake up and experience the dose of reality that’s about to hit you in the face when the alarm clock goes off in about oh…three minutes?

My husband and I are living that dream so far. It’s been two weeks since B started Kindergarten. The painstaking anxiety both her and I felt about that first day of school has past, and the dream just keeps on going. She’s doing so incredibly well! She’s excited to go off to school every morning. She has access to whatever sensory tools she needs throughout the day (water bottle, gum, therapy brush, deep pressure touch, dry and crunchy snacks, noise cancelling headphones, and wiggle cushion). She hasn’t had one, noticeable (I say noticeable because she masks her sensory issues pretty well in most social situations) melt-down at school in the last two weeks. She comes home excited to tell me all about her day.

We’ve only had a couple of small discussions about lunch in the cafeteria. Both were smell-related problems. The first day she had to move away from someone eating a hamburger. The second time she told me she had a hard time smelling the pizza. She’s been getting really good at figuring out solutions to her sensory challenges. I asked her what she thought we should do about it. She said we should try smelling the italian spices in small doses at home so she could work her way up to handling the smell of pizza at school. I was pretty impressed.

I did make a mistake though. Since she hadn’t mentioned a lot about the smells/appearances of food in the lunchroom, I assumed everything was fine. Another strike out for mom. B wanted us to light a candle at home to help her with the smell of mashed potatoes. I pointed out that the smell of them didn’t bother her at school. I also reminded her that she doesn’t have candles at school. She came back with, “The smells bother me, I just don’t tell!” Big punch in the mommy gut. Despite those minor setbacks, school has been great. Her teacher has nothing but positive things to say and no more phone calls to keep me on the up and up about how she’s doing (they’re not needed).

We have seen a few emotional hiccups at home, but that’s to be expected. She’s feeling especially jealous of all the 1:1 time her younger sister gets while she’s at school. She’s been a bit more emotionally needy when she gets home. She cries very easily and needs some rocking and deep pressure snuggles to help her emotional radar return to its center. Nothing we can’t handle 🙂

She’s even trying to eat some new snack foods. This is where I have to focus on the positive and remind myself that even snack foods are better than nothing. She tried some cinnamon toast crunch at school, some cheesy curls at church, and she’s still working on chewing and spitting out nuts. I try not to get bogged down with the other things…like how she used to eat red apples, but since we’ve introduced green she’s decided that only green are tasty (same w/ grapes). Then there’s the fact that we still haven’t found one other protein food that she’ll eat in addition to the few she eats.

Focusing on those few things would mean that I have to wake up from my dream and face reality. I’m enjoying this dream too much at the moment; therefore, I’m going to snuggle down a little deeper and revel in the growth B’s made in the last month or so. At some point, that alarm will go off, reality will set in, and I’ll have to face the other moments head on. So, for now, I’m going to dream a little while longer…

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The Sensory Moments that Get Me

As a parent, do you ever have those little moments that just get you? They break your heart, they annoy you, make you insane, make you laugh, and at times they make you sob uncontrollably. Ask the same question to a parent of a child with Sensory Processing Disorder or other sensory issues, and I can guarantee that those moments are personified times 10 with emotions running high seven days a week (That’s right! Some weeks are “forever” moments. Nowhere close to “little.”).

As hard as I try to stay positive in the face of SPD, I find those times when certain circumstances take my breath away. It’s like a kick in the gut. Last week for example…We were invited over for a cookout at our Pastor’s house. For those of you who don’t know B’s greatest sensory challenge is eating. She has only 5 proteins that she’ll eat consistently, one vegetable, a handful of fruits, and about 10 dry/crunchy foods (aka her junk foods). Back to the cookout. There were at least 30+ adults there and 15+kiddos running around. We got there and B refused to go inside without holding onto me. She hid behind me and barely made eye contact or spoke to anyone for the first 20-30 minutes. She played by herself on the swings for a good 10 min and then came inside to get something to eat. That’s when she spoke up. “Mommy, I’m not used to being around so many people.” There it was. Like a balloon that someone let the air out of. I had a moment of, “Damn you SPD!” It was written all over her face. The overwhelming look. The “I can’t process all this stuff coming at me” look.

The eating challenges stare us in the face every, single day. The other aspects/challenges of SPD are a lot more random. Those are the days that throw me for a loop. I had another moment the other day when I was teasing her. She asked if she could have ketchup with her chicken nuggets for dinner (mind you she ALWAYS gets ketchup with her nuggets). With a grin on my face I teasingly said, “I don’t think so!” Her response was so literal. “Why can’t I have ketchup?” I had to explain I was teasing, and she came back with, “I just don’t like teasing. When you say things, even if you’re teasing, I think they’re real and you’re really going to do it.” Another slap on the wrist for mom.

It took an OT explaining that teasing is another one of the sensory/social cues that develop much later for our kiddos before I recognized that we are responding to her all wrong. She understands what the word teasing means and understands that people may say things with a smile when they’re teasing, but her brain simply can’t process it the way it’s supposed to.

She also loses it when her little sister starts to cry. This never used to bother her, but all of a sudden she goes into melt-down mode and cries out, “I’m not going to listen to this! Please stop!” I’m still getting the hang of remembering all of her sensory tools too and of course when her sister starts crying it’s usually when we’re in the car, and the headphones are sitting at home on at dining room chair! Strike two mom.

These are the days when I just want to sit in the corner and cry. I can’t imagine what this unpredictable world is like for her; yet, half the time I don’t have my own house organized. How am I supposed to organize her little sensory world in a way that makes sense? Sensory tools, occupational therapy appointments, food therapy appointments, groceries for the therapy, Integrated Listening therapy, brushing therapy, sensory input over the course of the entire day…the list continues.

I’m open to hearing I’m not alone. I know so many sensory parents have their frustrating moments. I just want to let you know that I hear you. I read your blogs and your personal Facebook posts. I’ve talked to some of you privately. I’ve chatted with a couple of you on the street. We are all kindred spirits for at least we all understand each other. Hugs to each and every SPD parent, caretaker, grandparent, or anyone who deals with the ins/outs of kiddos sensory challenges on a daily basis.

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Mental Preparation

Last week B attended Vacation Bible School (VBS) at a local church for five full days. Of course I was nervous that she’d be gone from 9 a.m. until 3 p.m. every day that week, but she was over the moon excited to see friends she hadn’t seen since Sunday School ended in May.

My nervous mama mode kicked in on the first day. B arrived and was her usual shy, reserved self. Give her twenty min. of warm up time, and a teacher/counselor that loves to hug, smile, and talk and she’s all yours. That day the day camp counselors were busy completing check-in tasks. B walked over to a friend who was holding hands with another girl. B said, “Hi.” but her little face was crushed to see that her friend was busy entertaining someone else.

More kids came and sat down and not one of the girls came and sat next to her. My heart skipped a beat (and broke a little) when she came over to me and buried her face in my lap asking when VBS was going to start. I knew she’d be okay once things got started, but I also had that moment of “Is this what her first day of Kindergarten is going to be like in less than a month?”

The rest of her week at VBS went very well. She knew two of the camp counselors and she latched onto them like glue. She was talking to the other girls and participating in all of the activities! She even made it through lunch without much direction from me!

Lunch in and of itself was a HUGE accomplishment! As some of you know, B has a VERY difficult time with certain smells, appearances, and tastes of many different foods. I am dreading Kindergarten simply because she mentions how she doesn’t want to eat in the cafeteria. Especially on pizza day. So, to my surprise, she took it upon herself to sit at the end of the table on the day that another child brought summer sausage in his lunch. She took it upon herself to plug her nose when everyone at her table was eating bologna sandwiches (Was it kosher? Probably not, but she didn’t have to physically leave the table or sit somewhere else). I was beyond excited for her! Excited that she learned a few coping skills all on her own! That she didn’t isolate herself from everyone else. Pretty proud mama bear moment for me 🙂

That being said, we did get a few glimpses at what we may encounter once she starts kindergarten. While she held it together at school, she had some difficult days at home. One morning she was so pokey I lost my cool and raised my voice. I told her she wasn’t listening and she burst into tears. The tears didn’t stop until we got to VBS and they continued as sniffles at VBS. We’ve noticed now that every time her 2.5 year old little sister starts crying she covers her ears and yells, “Stop crying, please stop crying, I just can’t take it!”

She’s also been CRAVING some serious deep pressure input. She’s been squeezing my arms and legs extra hard lately, hanging on doors, and jumping all over us. She’s also having issues with personal space. She needs reminders that not everyone likes someone yelling “Boo” in their face.

So what’s next? I’m so grateful that I had this week of VBS to prepare myself mentally for what’s ahead. I called B’s school principal and set up a meeting BEFORE school starts so that we can meet and talk about her sensory diet. The things she needs to set her up for success and not dealing with the repercussions after she starts. We’re going to get a 504 in place for the accommodations needed at school. I met with her kindergarten teacher and supplied her with the book “Understanding Your Child’s Sensory Signals” by Angie Voss. I tagged all of the sensory signals B displays so she would know exactly how to respond to B’s needs. I’m prepared to rev up the sensory input before and after school so she feels in control of her body. I’m prepared to give her the down time she needs when she gets home. If she needs 15 min. in the swing, pillow cave, or squish box, you better believe I’ll give it to her 🙂 I’m prepared to be “B’s” best advocate. To encourage, support, and celebrate her. All of the new things she’s going to learn. The new friends she’ll make. The new skills she’ll pick up.

After all, that’s what we as parents are called to do. To encourage our kids to be themselves. To demonstrate to others that our kids are unique and awesome. To let their tender spirits shine no matter what. We are their voices at the beginning stages of their journey. At times we have to be their voices in the middle, and no matter what we give them the love, understanding, and encouragement they need. To treasure our kids as the blessings they really are.

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Trust Your Instincts

It’s the middle of summer. The time when parents are out there swimming with their kids, visiting indoor play areas, taking trips to the library, going out for ice cream, meeting other parents for playdates, going on vacation, sending their kids to Vacation Bible School…the activities are endless!

Then, there are the trips to the stores. Where everything screams “Back to School!” Backpacks, school supplies, lunch boxes. All of a sudden the anxiety sets in, and I start thinking, “It’s right around the corner, and there’s so much to do to prepare B for school!” It is only the end of July right? I know for some of you school starts in August, and it is literally right around the corner. School around here though doesn’t start until September 1st. The thought of school shopping in a week or two (because if I wait until the end of Aug. there will be no supplies to choose from) makes me cringe.

Why all the worries? Why all the fears? I think as a parent of a child with sensory processing disorder it’s easy to get caught up in the “What if’s?” I want only whats best for B and Sensory Processing Disorder is such uncharted territory. Believe me, I’ve been doing my research, and I’ve found information from some extremely valuable sources. However, it’s so easy to get caught up in the future and the uncertainty. It’s so easy to question your decisions when you don’t have a manual that tells you the right answers 😉

About three weeks ago, B mentioned how worried she is about eating in the cafeteria at school. We also hit a bit of a road block in food school. Instead of assessing the sensory components related to what was going on…I got caught up in the “fix it” syndrome. I had been given some advice about how B was displaying symptoms of anxiety and that certain types of therapy can help alleviate the anxiousness.

Of course she’s displaying symptoms of anxiety! She’s growing, she’s starting a new school this fall, and our summer routine is all over the place! When your world is spinning out of control, you try controlling what you can. If you can’t control it, you begin to worry and show signs of stress/anxiety.

Being the worrier that I am (and against my better judgment), I decided to look into these two different types of therapy. After meeting with one of the therapists, who didn’t really understand the sensory component from a practical standpoint, I came home feeling frustrated, alone, mentally exhausted, and clueless as to our next step.

It was after a much-needed vent session with a dear friend, that she pointed out how I needed to trust my instincts and stop listening to all the people feeding me with “quick fixes.” She explained that I do have people on my side. My mom (aka my rock) who always supports our decisions no matter what. Who has dove in with both feet to learn any and everything she can to help B and others like her. My husband who listens with both ears open and offers suggestions when he has them. Who wrestles with B to give her deep pressure. Makes smoothies with her to work on the food/eating skills. Questions therapies that cost thousands of dollars with no guarantees. He stands by and jumps in when I need a break. I also need to remember the sensory mamas out there who offer their support and encouragement whether I’m feeling overwhelmed or excited.

As for the others, I don’t need to answer to them. I need to trust my motherly instincts and accept “B” for who she is. Stop pushing and stop obsessing. She’s such a blessing to our family. She’s taught me so much love!

So, with that…I’ve decided that I’m going to listen to what my gut has said all along. I’m going to increase and rev up the sensory diet at home and back way down on the eating program. We’re not pursing any additional/new therapies at this time. Heck, it’s summer…and we still have an entire month left here! I want B and our family to enjoy it to it’s fullest before she’s off to full-day kindergarten. There’s plenty of time for the other stuff. Right now, I want to focus on my girls being “kids” and enjoying their summer. 🙂

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