Come and Get It! *insert farm-style dinner triangle sound*

Mealtime.

The word mealtime makes me sick to my stomach. The thought of making food makes me anxious. Feeding my child makes me feel frustrated and alone. It makes me want to avoid real food of my own. It makes me want to curl up in a corner by myself with some artificially-flavored processed food in a bag and eat with no one around. No utensils or pans or pots or strainers. No knives and cutting boards. No dinner time banter. Just easy, non threatening food. Just the type of food that keeps you alive but doesn’t satisfy.

No, I don’t have an eating disorder. I have a son who has real and serious food problems. Those of you who know me know that my son has sensory processing integration issues. He also has geographic tongue. He also has tongue thrust. He also now has tons of anxiety about food and an aversion to putting things in his mouth. He mentally blocks out the rest of the food at the table and barely acknowledges his. I have written about food therapy before. We have done a lot in the past and we continue to do therapy for it. “We are working on it.” is our motto.

 

But today I want to share a little about what all of this feels like to ME. (if you want to skip the in depth details because you already know how frustrating it is – scroll down a few paragraphs to where I say “breathe.”)

 

I have been dealing with this since before he was about age 3. Actually, I have been dealing with it all of his life – he had a hard time suckling at first – we had to supplement, he was picky about his bottle nipples and couldn’t ingest enough to ever go up from a new born sized flow. His first 3 formulas (after I had to quit nursing for cancer treatments) made him sick. He did ok with pureed baby foods, but when we got to the chunkier textures or mashed up foods he resisted. Once we got him to accept those, moving on to table foods was like climbing Mount Everest. But we did it, and he ate almost anything I gave him for probably 6 mos to 1 yr. And then it started. He began eliminating foods from his diet. He began eliminating textures from his diet. It became so exhausting that I gave up and fed him what he would eat. It took a long time to get his doctor to send us to feeding therapy. It cost a lot of money to just get him sitting at the table with other smells of foods. Fast forward to 7 yrs old and it is still exhausting. I have learned to deal with it at home. I have figured out foods I can send to school. If he goes to a friend’s house, I send snacks. We work on therapy every day. There is one major thing that still makes the problems he has really difficult. Traveling.

Traveling with a child who won’t eat is challenging. Generally when we travel I have to plan as much or more for his eating as I do for anything else. We recently took a lovely trip to Yellowstone National Park. Half of the back seat and alongside the middle seat in our van was full of food for my son. Non perishables in bags and perishables in a cooler. It is far easier to bring most of what we need along because I can’t always find what he will eat in another area. For example, my son will eat blueberry muffins for breakfast. That is the easiest and most portable breakfast he eats. But he will only eat one kind. One brand. One version of blueberry muffins. One version of cheese sticks. One version of spaghetti sauce. The only thing we can order in a restaurant is French Fries (some places with chicken nuggets) or Spaghetti. Not Penne with marinara, not Bow Tie Pasta, not Mac and Cheese. Spaghetti. With no meat marinara. And I just have to hope he will accept the flavor of the sauce or that I can get enough of it in him and supplement with snacks.

Generally when we travel I try to have a home base. That makes it much easier to feed him. This trip happened to be near my family and we were going to be staying with them for all but the last 2 days of the trip. I was able to make him spaghetti at the first house and I was able to put it in his thermos and take it for our long day excursions. He ate a good breakfast, had a lunch to go, and along with other snacks and some fruit, we did ok. Then we arrived at the second house we would be staying at. I still had lunch for the next day, but after that it got a little dicey. I guess I didn’t convey what I needed well, because they didn’t have any spaghetti to make. They had linguini. But he won’t eat that. That day was difficult. I was very worried the whole day about feeding him. He doesn’t eat super nutritious on our trips, but as long and he maintains calories and isn’t fussy and crying all day, I am ok with that. I knew from our last trip to Yellowstone that they didn’t have anything for him to eat at most places. Chips and ice cream was all he ate last year. It didn’t work out well. So, from now on, instead of just taking the spaghetti sauce, I will make sure I have spaghetti as well. We stayed in a cabin the last few nights and that was worse. I had to keep getting new ice to keep some of his food cold in a cooler, there was no microwave or toaster, all he really ate was snacks – no actual meals. It was so frustrating. Generally I only stay in hotels that have a mini fridge and a microwave, but that wasn’t an option. Protip: there is no McDonalds in YNP.

The stress of feeding my son on a trip can be as exhausting as the actual trip. We did have a nice time and despite the food challenges we made it through mostly happy and very glad we went.

Two weeks later here I am trying to figure out how to feed him for 3 days at our family reunion at a ranch in the mountains. They are serving plenty of kid friendly foods – sandwiches, pancakes, sloppy joes, hotdogs, and my son eats none of them. I am making myself sick with worry. What can I take that I can keep in my room? What can I take that I can store in the fridge and how do I make sure I have enough in case some of the other 40+ kids see it and want some? How do I prepare food for him? What will be available? Is there a toaster or microwave? I will have to feed him before the rest of us or rush around trying to get his food and my own before the actual food is gone. I almost don’t want to go between that and the way the timing overlaps his school starting. Can you see where he gets the anxiety piece from?

 

OK. Breathe. Just typing this makes my skin crawl.

 

Let me try to put into words why this all makes me so frustrated and upset. There are a lot of reasons, but I will try to express them.

1. What is the main job of any mother? Break it down. After you strip away all the stuff. All the activities and play dates and homework and school supplies and exercise and OT and dental exams and “say please and thank you” and EVERYTHING, what is left? The main job of any mother is to feed and shelter her children. To feed her children so they grow to be strong and healthy and to shelter her children from the elements and harm. That is the job of mothers. If you can not feed your child, it makes you feel like a failure at the deepest level. It makes you feel like an unfit mom. So, you can’t afford swim lessons. You can’t buy the shirt they want. You can’t fit any thing more into your already too busy schedule. You can’t get off work to see the school play. You can’t take them to the park this time. You can’t tuck them in bed and tell them how loved they are tonight. Strip all that away. You are feeding and sheltering your child and that is what really truly matters.

Now try to consider how it feels to fail in that department. Some of you may be able to. I know some of my in laws can. They were in war torn Georgia when my husband was little and they DID know what hungry was. People who have been homeless or lived in shelters before may know what it feels like. I don’t know what it feels like to not be able to PROVIDE some kind of food for my child. (thank everything that is out there that I just happen to have all we NEED) But I know how it feels to have nothing he can eat without throwing up and to have his anxiety so high he is in tears and to have him telling me that he is hungry. It feels like failure. It tastes and smells and looks and feels like failure.

2. Other people just don’t get it. There are other people I know who understand some of what this challenge is like. Other sensory processing moms, other food therapy group moms, the therapists we have worked with and the staff that supports them. But most of the people I come across, including doctors and some of my family and in-laws, they just don’t understand. They think if I just did this or I just did that or I just tried harder or I just let him go hungry – they think it is my fault. And if they don’t think it’s my fault, they do think it’s a little ridiculous. The looks and comments I get, the zero sympathy, the cold shoulders, the “we do have food in our house” comments – it’s too much sometimes. It’s enough to make me isolate and avoid those situations. Even really well meaning people make it more stressful for me. We are contemplating going to Russia next summer. The last trip we made was horrible as far as food went. He wouldn’t eat. The baby food tasted different, the soups and foods were all different. He ate fruit and drank juice for a month. My MIL force fed him a few times behind my back and just the thought of that makes me irate. I am afraid to go to Russia next year. Even if I get him eating hot dogs, their hot dogs taste and feel and smell differently. Even if I get him eating sandwiches, their bread and meat and cheese and jam is all different. I suppose what we will have to do is get him eating one solid meal his grandma makes – soup or pizza or something – and that’s what he will eat. Except even that – even one food – seems nearly insurmountable. And the thought of the relatives (who ask all the time on the phone or Skype about it – and who truly mean well and want to help – but who just stress me out) makes me want to hide in the closet.

Try not feeling like a failure when most people you know are telling you that you are. Try moving past that to help your child. It’s difficult at best.

3. It is difficult and expensive. Trying new foods for weeks on end, just to have most of it thrown away – that is frustrating and wasteful. But I can only eat so many hot dogs or chips or cheese sticks or whatever. I am trying to nourish my body too, and I’d rather throw some of it away than keep stuffing my face with junk. Why do we try mostly junk? We don’t – we try new fruits and veggies and dairy products too. But the other stuff – I just have to throw a lot of it away. I can’t buy generic brand anything. He likes blueberry Eggo waffles. He likes Kraft 2% string cheese. He likes Honey Maid graham crackers. He knows if it’s a different brand. He does not have to see the package to know that this waffle doesn’t taste “right”. To most of us, generic brand tastes a little different. To him it’s a huge difference. One of the ways we try to give him variety is to try different “forms” of a food he already knows. So applesauce – we tried the squeeze packs all the kids are taking to school. He couldn’t do it. He couldn’t eat it. Same brand, same flavor, different package. That was too much. The amount of work we do on eating and feeding is insane. I can’t even go into the cost of therapy. It makes me want to cry. The extra work I do to make him foods he will accept and include them into our meals is very time consuming. The encouraging him to help me in the kitchen and having to supervise and sometimes redo what he has done is exhausting. But I know it’s all good for him, so I do my best.

4. It’s emotionally draining. For all of the above reasons – it’s draining and it’s lonely. Trying to hide my emotions about it is exhausting. Our therapists have told us that we need to keep the emotion out of it, because he has enough of his own. So when he gags or throws up, I am not supposed to run comfort him. I am supposed to tell him he’s ok and encourage him to keep going. That one isn’t hard for me, because after a few gags you get used to it. When he gets anxious, that’s a little harder for me. I understand he can’t help it, but I just wish it wasn’t “how things are for us.” I wish sitting down at the table could be enjoyable. I wish going to a restaurant where they throw food in the air and your dad catches it in his mouth could be an adventure. I wish watching someone make sushi and trying it could be exciting. I wish I could just feed him healthy foods and have him eat when we go somewhere else. I wish it so much that sometimes I get more frustrated than I should and I show it. On this last trip there were several times when I was able to keep my calm and help him work through the anxiety. But there was one meal that I just lost it. I couldn’t take the not eating and the frustration any more that day and I wasn’t very nice. I got upset and I told him he would just have to be hungry. There wasn’t anything he would eat and I probably made a scene. I felt embarrassed because I had gone next door to this little “deli” to get turkey meat. He will eat deli turkey meat. I said “I need turkey meat.” “The sandwiches are over there, miss.” “yes, but I need just the meat. No bread. No cheese, no mayo, no lettuce. Just the meat.” I had to explain it several times and he kept staring at me like I had 3 eyes. Finally he figured it out, but he told me I would have to pay for the whole sandwich. I was totally willing. We go back and sit down with our family and I have to go get my own food. Generally I have to rush to eat because I have had to run around feeding him first. When I got back my son told me he couldn’t eat the turkey and after 5 days I was exhausted and spent. I did not keep my emotions out of it. I did not help him with his anxiety. I had just had too much.

And then, we are back to #1 again, because the worse I make him feel about not eating, the worse his anxiety and the guilt are, the less successful we are at trying new things. So there you go, another failure.

There isn’t a happy ending to this story. I don’t know when we will get to a place where I am more comfortable with the whole food issue. I don’t even know how we will get there. I still have a reunion to try to prepare for. I still just want to go hide in the closet. BUT, there is this: if your child is like mine, know that you aren’t alone. And know you really aren’t a failure and you really aren’t doing everything wrong, even though it feels like it and well meaning relatives tell you that you are. Just keep swimming. Or tread water if you have to. Keep that nose above water if that’s all you’ve got. Hate mealtimes, try not to let your child see you roll your eyes or sigh deeply or go into the bathroom to cry. Or don’t if you can’t. It’s all ok. You can get through it again. Day after day. I mean, after all, what choice do you have?

SensoryBlogHop

(this post is part of a Sensory Blog Hop – click above to see blogs from other sensory families)

 

 

Draw your lines, dude.

Today was a difficult day. My son’s sensory problems were overwhelming for both of us. It doesn’t matter that we do home therapy every day and that we have come through a year of professional OT services and that he has improved so much. Some days are still just difficult. And I suppose that is ok. We all have difficult days. I try to remember that, I really do.

Today started out bad. Socks didn’t fit right, waffles didn’t taste right, there was too much sun, too little sun. Everything was stinky. His friends came over and jumped on the trampoline with him. One of the friends accidentally tripped over him and he thought his arm was broken because it hurt so badly. I made him come inside to rest and lay down.

Days like this, I don’t know what to do. Screen time makes him feel worse, but that’s all he wants – to rest in a cool dark room and veg out watching movies. Taking him anywhere (I have learned) is useless – nothing will turn a day like that worse faster than going in public. So, we melted into a pile of his tears, my hair and snuggles. It didn’t make everything better, but I was able to show him I am here for him, anytime – every time.

Maybe that’s the key.

Maybe I can’t fix everything. Maybe I can’t make it all better. I know when I am having a bad day no one else can make it right. So, we did some OT. Then I threw him in the bath. Then when he couldn’t eat more than a couple bites of ANYTHING, I just let it go. I let him munch a little on what he asked for all day. He snuggled with the dog and with me. I took some time for myself on the computer.

At some point it hit me:

Why do I expect more out of my son than I do myself? No, I don’t have his sensory issues. But I have anxiety and fatigue and pain and some other issues. Do you know what it’s like to go out into a loud, public, crowded place when you are anxious? I do. And I think my son feels similarly when he is having a hard day. I don’t expect myself to do things that are too overwhelming. I have very well defined lines that I won’t make myself cross for much of anything. Maybe my brother’s graduation or a cousin’s wedding. But for the most part I do what I need to to help myself. So why don’t I allow my son the same?

And right then and there I decided that might be the best thing I can teach him on days like this.

Draw your lines, dude.

Stick to it. Don’t let anyone make you do something that makes you feel uncomfortable or hurt, even your mom. If you can’t play with your friends, I will tell them you don’t want to play. (Not that I said you can’t, not that you aren’t feeling well, but that you don’t want to, because that should be all it takes for you to not have to do something. Saying you don’t want to should be enough. No excuses. Do what makes you feel best.)

Tell me what you need. Tell me your frozen gogurt sucks today. Tell me you can’t stand the smell of the dog’s breath. Tell your dad he is wrestling too hard. Tell us what you need.

Maybe THAT is the point of these days.

Maybe THAT is what you need to learn.

That you can’t always do it all.

No one can.

And THAT is ok.

 

 

*this is part of a “blog hop” for talking about Sensory Processing problems. I wrote it before I was invited to that, but it seemed to fit, so I waited to post it.*

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Slogging Uphill Through Jello – AKA Mother’s Day

Moms, we need a gang sign.

Something that says “I get you, mom” or “I got your back, sistah” or just “keep on keepin’ on – only 4 hours til bedtime, girl.”

I have discussed this with some friends and although I really like the “double chest pound/peace sign”, the kids have already used that for “I’m out” – which isn’t really the feeling I am going for here.

So, can we work on that, please?

For those of you who don’t understand what I am saying, let me be a little more clear.

We need a sign – a sign that says “I saw that. I totally saw your kid spit on his sister. I know he just wanted to make her cry. Ignore the lady behind you giving you the stink eye, because I get it. I get why you are infuriated with him right now – and I know this is probably the 15th time today that you have had to tell him to stop and you just can’t. take. it. anymore. I get that. Don’t you feel bad about loosing your mind right now. It happens to the best of us.”

We need a sign that says “you gotsta pick your battles, mom. There are only so many times you can say no in a day, or stop it, or what is going on with you today? Seriously. You aren’t made of steel. Let that lollipop she probably found between the seats from the dr’s appointment 2 weeks ago go. Just let it go. Like the Disney song you would like to let go of too. Let it go.”

Our sign needs to encompass a lot of emotions. Because we ride a roller coaster of emotions every day. Our sign needs to say “oh mama, with your eyes full of pride for your child and tears threatening to spill over – Oh mama, I love you. I don’t know you, but I love you and I love your love for your babe, and now – now you have me crying too. Mama with the baby that just started walking, or the 1st grader who overcame her stage fright, or the big boy who wrote a poem that you didn’t know was in that amazing heart of his…. Mama, I know that love and I want to share it with you.”

Our sign needs to say “Mom with the special needs kiddo, mom we get it. We know that some of your mornings you don’t think you can get up again. We know that not sleeping for the past 35 years has just about done you in. And we know that every day you do it. You do it again and again. And you love that kiddo with all your might. We know that special needs often also means a special love. That you give so much more than you ever knew possible. We thank you. We thank you for showing us what that love looks like.”

And it needs to say “Child, you need to thank your mom when you grow up, because you have NO idea how patient she is being right now in the middle of the store while you kick and scream and throw a fit over whatever cereal it is you want. You have NO idea how hard it is to stand there and let you scream and fall on the floor and attract attention from EVERY one in the store. How embarrassing it is to have to push you out of the way with your foot so someone can get by. You don’t know the looks she is getting right now, while she pretends to read the label on another package and wait for you to calm yourself down. Thank your mama one day, child.”

Moms, we need a gang sign.

We need a sign that says “It’s ok if your child ruined the chances of my child getting to go outside in the sun on this beautiful day in group therapy because he was melting down and had to take most of the therapist’s time. It’s ok. Sit down and tell me how you are.” Like some beautiful ladies did for me today.

A sign that says “I get it. I feel like I am slogging uphill through jello too. I feel like I will NEVER see the top. And really, I never will. I will worry and hope and wish and love my child every single day for the rest of his life, and he won’t even know how I feel. He may never know this unconditional, pure, perfect love. Maybe if he has a child of his own one day…   But he may never know what it feels like to love him no matter WHAT he does or who he is. In fact, sometimes you love him even more on those hard days because you hate to see him struggle.”

We need a sign that says “Whatever struggle you are going through, you can rest assured that we want to support you. Whether your child is sick, or struggling in school, or just got arrested for possession of drugs. Whether you don’t know where your child is because they ran away, or you can’t get them out of your basement because they are depressed. Whether your are beaming at your child’s graduation from medical school, or you are cheering the fact that they finally talked. We are here. We may not know your specific struggle or joy, but we know what it feels like to struggle and have overwhelming joy. We support each other.”

This sign also needs to say “All types of moms – we are here for you. Moms who want to be mamas and can’t, or moms who are waiting to adopt and have been heartbroken too many times. Moms who have had children but knew it wasn’t the right time for them and gave their baby a chance at a life they couldn’t give. Moms who have inner demons that are too strong to wrestle and who have lost their babies in the process. Moms who have known the pain of miscarriage. Moms who took in children who needed a home, temporary or permanent. Moms who struggle every day to take care of their child. Women who know that they aren’t meant to be moms and trust that instinct and understand that it’s ok not to be a mom. We are here for you. We are thankful for you all.”

We need a way to tell each other that we understand. That we are going through it too. That we are going to keep on keepin on through every bedtime and teachers conference and principal’s call and therapists appointment and bad grade and college drop out. That we may need wine (or tequila) to get through those things, but we will be there. We need something that says “this is the hardest, most demanding, most exhausting, most frustrating, most anger ensuing thing I have ever done. AND it’s the best, most wonderful, most amazing and mind blowing thing I have ever done too. And THAT, my fellow moms, is beautiful.”

Can we work on that, Moms?

Happy Mother’s Day

Keep on keepin on.

 

 

Perspective and 7 year olds

My son and I had a “your life isn’t so bad if you really look around” conversation this morning. It may have been the first one we have had. I purposely avoid comparing our lives to other people’s lives for several reasons. One is because everyone has pain and your pain and my pain may be different, or even seem less severe, but that doesn’t diminish the fact that I am in pain. Another is because he is 7 and let’s face it, 7 year olds don’t have the brain development necessary to really understand that across the world somewhere is another boy just like him who’s life sucks – bad – and we can’t even really do anything about it from here. Not directly anyway. However, this week has been challenging for both of us. The last few weeks really. This morning we were talking about getting his hair cut for his uncle’s wedding and school photos. He was upset because cutting his hair makes him “so itchy”. Now, I know that haircuts are challenging for my son. Lots of kids with sensory issues have a hard time with haircuts. He hates the razor, it doesn’t feel ticklish or funny, it feels like it hurts. He doesn’t like the scissors either – he feels like he is getting poked or pulled or hurt in other ways. He feels attacked. And a few times the stylist has told him they weren’t hurting him, and then nicked his ear or neck. It’s better than it used to be. We used to have to hold him down and only got haircuts every 6 months or so. But. We weren’t going to the stylist today. He didn’t need to freak out about it today, before school. So I told him to stop. I said that being itchy after a haircut isn’t the worst thing in the world. There are lots of worse things and he needed to chillax. He asked what the worse things were and I said “kids who are hungry because they don’t have enough food.” He said “or kids who are orphans.” I said “or kids who don’t have a home and have to sleep on the cold hard ground who are orphans.” It actually helped. He was then thinking about other kids who’s lives were harder instead of worrying about being itchy. And then my fussiness about people being in my way in the kitchen as I prepare his lunch for school also seemed pretty petty. Sometimes a little perspective is a good thing.

Trauma and Hope – My Messy Beautiful

We collect tragedies and traumas, don’t we?

String them together like shiny, sharp beads on a cord to wear around our necks.

They glint and reflect the sunshine – showing themselves to all who see us.

This one is for the day I woke up long past time to get up for school and knew something was wrong because I had slept in – the day I woke up and found out my grandmother had died. My first real loss. This one is for the chest surgery I had 2,552 days ago – and all the rest of the surgeries and treatments and pain my cancer brought me. This one is for not being what my mother needed when she needed me most; even though she was always, always what I needed. This one is for the day I signed the papers for my son to enter special ed. This one is for one of the days I woke up not able to function in life, killing my pain with addictive substances and pushing out all the good people I knew. There are so many more. Some are bigger and sharper than others, but they are all there, shiny and sharp and making up my life.

I define myself, really, by these “bad events” in my life. I always have. If you ask me who I am, my mind goes to the days that hurt the most – because somewhere in my mind I think they shaped me the most. And they did shape me, both the tragedy and the relief and release and beauty that came from them all.

But, did they shape me the most?

What would happen if, instead of letting those beads define me, I made a necklace of good things that have happened in my life? What would happen if I let those sharp painful beads rest in my dresser drawer, underneath the socks and underwear for a while?

The new necklace would be full of bright colors and soft curves. Also shiny and also seen by all who know me.

This one is for the days I played in the park as a child, unafraid of the world – climbing trees and laying in the soft grass and hiding in a “clubhouse” of evergreen clusters with my friends and brothers. This one is for the horse riding at the cattle camp with my grandpa and uncles and cousins and dad. This one is for graduation with all my family there to see and all of my friends happy and smiling. This one is for the day I realized it wasn’t all horrible – that life is beautiful and kind and lovely as well. This one is for getting to know my brothers as adults and truly enjoying their company. This one is for the day my husband met his son, standing in the airport after a 15 hour plane ride, holding his 3 week old son and smiling. This one is for the first day I heard “Mama” and this one is for the snuggling and hair twirling and little kisses on my face. This one is for the day I signed papers for my son to enter special ed, but also realized that he is wonderful and beautiful no matter what – and that my job is just to help him, not to “fix” him. One for every family member and friend. Again, there are so many more, all different sizes and shapes. Also making up my life.

But that necklace, as beautiful as it is, doesn’t show my whole life either. It doesn’t shape me in the same way, it doesn’t let me learn from my mistakes and the pain and the sorrow. It doesn’t define me either.

So now, day to day, I am learning and trying to live in a way that allows me to have both. To put those beads side by side. The shiny sharp ones and the colorful curvy ones. I am learning to open my heart to it all, as painful as both the beauty and the sorrow can be.

We are not only our tragedy and trauma, and we are not only our hopeful and happy. We are messy and beautiful all at once.

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life

Life is hard. It is. It’s hard. And it’s lovely. Both. One of my favorite bloggers (Glennon Melton at Momastery) says that life is brutiful. Brutal and beautiful at the same time. I agree. But here is the secret: you can’t know one without the other. When I was young I was somewhat obsessed with quotes. Especially the inspirational kind. I would type them up (yes TYPE on a typewriter) and cut them out into little strips of paper and put them on my wall. One of those quotes was “you can’t enjoy the sunshine without the rain.” I have no idea who first said it or if we even know. It seemed to strike a chord with me. I didn’t know that I would one day learn (as perhaps we all do) how true that saying is. You can’t know happiness unless you know sadness. You can’t know peace if you haven’t experienced turmoil. Our understanding of emotion is based on how we interpret our lives. Sometimes things have to be difficult. Sometimes things have to hurt a little. It is only then that we have a comparison for the good things. That’s how life goes.

I have several friends struggling lately. I worry for them. One of the common themes I find in all people who are going through a hard time is the “I just can’t wait until this part is over” thinking. I do it too. Maybe it helps us get through that part of life. Maybe it’s a defense mechanism – it makes us think about how things will be different, better, later on. It gives us a point to focus on and push toward. It’s like running long distance and finally seeing the finish line. I think. I don’t run, but if I did I can totally imagine me seeing that finish line and it giving me a little extra nudge to get there. If that’s how it helps us, I don’t think it’s a bad thing.

I have always been a “runner”. Not the racing kind, but the “I can’t get out of here fast enough” kind. It’s like my default way of dealing with stuff. I would run away from problems. Either by moving or by quitting or by using a variety of “chemicals” to help me forget. Sometimes I just used sleep and tv. Sometimes food. In the past few years I have experienced some things I can’t run away from. Things that you have to face head on or be broken by them. I believe those lessons have made me a better person. I want to share some of what I have learned. Maybe one day it will help someone. Maybe one of my struggling friends will find comfort from it.

1. Pain is inevitable.

Pain is part of life and you can not escape it all. No one can. When I was younger, trying to find myself, I took some meditation classes from a Buddhist center where I lived. It was a lovely place filled with lovely people. They gave meditation classes to the public every Sunday night. I enjoyed what I learned there. We had lovely lessons and even lovelier guided group meditations. One of the things that struck me was a set of phrases they used. They told us that if you feel pain while doing your meditation (say your back hurts from sitting too long, or your leg falls asleep, or your foot itches), don’t move, don’t try to wiggle it out. They said that life is full of pain. Trying to run away from it or change it does not help you. Instead they told us that if we experienced pain during our meditation the best thing to do was to accept it, breathe into it, acknowledge it and just be in the moment. That the pain would pass. Pain can be physical, emotional, and mental in the way I am using it here, and trust me, they all hurt. I believe this ties into the “you can’t experience the sunshine without the rain” thought process. If you don’t allow yourself to experience the bad, how will you know the good? I actually used the “breathe into it, acknowledge it” part a lot in years to come when I had painful surgeries, when my son was born, or when my chronic pain tortured me. But let’s analyse this in a real life situation, because let’s be honest, most pain doesn’t come when you are sitting in the Lotus position and breathing deeply with a calm mind. Let me use an example. When my mom was sick it was very painful for me. (for her more, but we are selfish beings) I worried about it. I stressed over it. I felt unable to help, and unable to fix things and unable to even be there the way she needed. Those are very difficult emotions for me. They caused a lot of emotional pain for me. I always fix stuff. But I couldn’t’ fix this. When I would quiet my mind and meditate and breathe into the pain, it helped me calm myself back down and find a more centered spot. It didn’t last long, but it did help me center myself again for a while. When my mom died it had been a really hard 6 months for our family. I can tell you almost all of the moments during a 5-6 day period of time with my family during the time of her death and funeral. I can remember all of the love, all of the pain, all of the breathing, all of the faces, all of the kindnesses. Because there was nothing I could do but sit, breathe, acknowledge the pain. Roll around in it. Wrap myself up in it. When time slows down like this, you know – you know you are in a life changing moment, and I am thankful I was able to accept it in this way. That’s not to say I didn’t have pain anymore. Or I still don’t. But I did my best to treat it like a part of life. A moment to learn from. When my Grandfather died I was not in a good place. I was using alcohol and drugs to calm my mind. I was hiding out from my family – not keeping in contact. I was losing jobs left and right. I was living in a dirty apartment. I was unable to process my feelings about his death at the time. Because I ran. I am happy I was able to learn that lesson later. Not all people meditate (though I recommend it to everyone because it’s awesome), but that doesn’t mean you can’t learn from the hard parts of life. Attempting to push the lessons you may be needing to learn away, trying to stop things from happening, trying to shelter yourself or others, does not help anyone. It causes more pain because your stress builds up. Your worry intensifies. You do not learn the lessons you are meant to learn. You do not progress.

It is the same way with our children. We want to protect them, stop the bad things from happening, keep them from being hurt. Some of these things are wise and good – like keeping your child from playing in dangerous chemicals, or keeping your baby from putting things in the electrical socket. But some things need to be experienced by our children – it’s how they learn. When my son was a baby I read that the way a baby learns to stand and walk is by falling down. Falling down and standing back up develop muscles babies need to be able to stand longer and one day walk. Falling down also helps them learn how they are oriented in space, cause and effect, how to control their bodies, and many more things. If we keep our toddlers from falling down, we rob them of the chance to learn. If you have read very many of my other blog posts, you know that my son struggles from time to time in different ways. One thing he struggles with is social aspects of life. He is loud, persistent, expectant, demanding. He knows what he wants and he WILL get it. Sometimes other kids don’t like these qualities – they call him bossy or mean or tell him to leave them alone. When this first started happening my instinct was to run to help. I was the mama bear just wanting to keep him from getting his feelings hurt, and to protect other kids too. Because he would throw big fits, I got into the habit of kind of hovering. I would always go with the kids so I could intervene at any moment. I would try to protect him from other kids AND himself. It wasn’t until he stopped the fit throwing most of the time that he started to really learn what other people expected of him socially. I realized that was because I was finally stepping back and letting him learn it on his own. I was finally giving him space to get hurt a little, or mess up a little, or even lose a friend so he could learn how to act in a socially acceptable way. I was protecting him too much. You can explain to a person HOW to ride a bike all you want. Until they actually do it for themselves they can not learn it. Now, sometimes he still needs social cues, and I try to give them if I am there and able to hear what is going on. But I also let him work things out on his own. If he asks what to do, or gets upset, I will give him advice or hints. But I let him fall down sometimes so he can learn. There is a time for everything, including being in pain. There is a time to sit and breathe in the moment and just accept the pain and let it roll around you. Robbing my child of his chance to have those moments didn’t do him any services. Like a toddler who’s parents don’t allow them to stand up on their own some, he would never learn to walk if I didn’t allow him to get hurt some.

2. This moment will never happen again.

This lesson brought to you by the words Cancer, Parenthood, Alzheimer’s, Death, and Love. Actually this lesson was brought to ME by those words. Life is fleeting. It really is. When you are 5 years old, each moment can last all day. When you are 35 you turn around and your son is in Preschool and you don’t know how it happened so fast. You can never get this moment back. And thank goodness for that for some of them, right? Like the ones where you are elbow deep in child poo and can’t reach the wipes that fell on the floor. Or when you son comes up to you with his hands full of something smelly and brown and says “Mom, I think there is poo on the playground.” (thanks to a friend for this example) Or when you are at the store and your son throws a fit because he wants something and you end up having to haul him out of the store kicking and screaming while everyone watches you and (in your mind) judges you as a bad mom. (hm, that’s a lot more potty talk than I am usually prone to. sorry for those mental images) Thank goodness some of THESE moments are fleeting. But some, some you do need to absorb. To slow down and look around you and make a mental photograph. To remember the exact way his smile turns up. To remember the laughter at your silly faces. To remember your husband and son holding each other, trusting each other, loving each other. To remember your mom walking with your son, holding hands, telling him the names of flowers, pointing to beautiful things for him to see. Things you did not see yourself. If you are constantly in a rush, how do you absorb and remember these? If you can’t slow down and stop pushing forward, stop forging the way, how do you remember the lovely lovely moments in life? How do you let them into your heart? When I was at my sickest from cancer – when I was at my mom and dad’s house with my baby – my husband 500 miles away – trying to prepare for another surgery – when I couldn’t lift my son – I sat and looked at him. I watched him. I touched his hand, stroked his toes, kissed his head. I handed him the soft ball he liked to hold, or held a toy up for him to reach for. I tried to absorb all of the moments I could. I had nothing to do but sit. Sit and rest and let my body be strong again. And so I did. I sat and I paid attention to those things in my life I needed to remember. When they wheeled my down to surgery, doped up on Versed, all 4 times, I had one beautiful thought in my head. I remember consciously choosing to drift off into never-land with the image of my son yawning in my head. The first time was spontaneous, but it calmed me so much I made it the routine. From the beginning he did the funniest cute little pucker of his lips at the beginning of his yawn. I loved it with all my heart – that moment of pucker, that second of adorableness – and I clung to that image. I let that image be my life raft, bringing me back to him when the surgery was over. I couldn’t help but think that this is what it must feel like when we die. Flashes of the most precious things in our life. A look, a touch, a kiss on a forehead, a pucker. Slow down. Slow down and see these moments. When you are bent over a pile of paperwork, or trying to get the dishes done so you can help with homework and get the kids in the bath, or counting the minutes until bedtime…. stop. Listen for a second. Look around for a second. Capture a moment instead of pushing them away.

3. No one can live like this all the time.

When I was at my sickest, as I mentioned in #2, I was at my Mom’s house. She watched Grey’s Anatomy every week at that time. I was off my thyroid meds and couldn’t follow 5 minutes of anything, so I just sat and watched with her. One of the episodes had a scene – and this scene is branded onto my mind – involving “enjoying every single moment.” One of the women characters (Izzy maybe) had had a near death experience of some sort, and had been going around all week telling everyone to enjoy every moment, pointing out the beauty in every single thing. Telling people to just be thankful they were alive and stop bickering, thrusting her amazement at the beauty of the world onto everyone else. One of the other women characters (Meredith perhaps) told her to knock it off. She said she was glad that her friend had this experience, and that it helped her see the beauty in every moment, but that most people just can’t live like that all the time. Most people are just trying to get through the moment. ** That hit me as well. It was true. While I was sitting, getting stronger, absorbing every minute I was able to stay awake, my family was bustling around me. Arranging child care help, feeding us, cleaning up after us, helping me with showers, getting up in the night with my baby. I doubt they were able to absorb much of anything, honestly. And I realized that sometimes it isn’t the “season” for absorbing and loving and seeing the beauty. Sometimes it the season for pushing ahead, getting up and going forward a few more steps, pushing yourself to keep going. Like a child learning to ride a bike, if you fall down and just sit there and wallow in the hurt and think about how scary it felt to fall, you will never get on again. If you don’t pick yourself up and try again, you won’t learn to ride. Sometimes it’s the season of getting up and trying again.

4. Life is easier with those you love.

Find strength in those whom you love. In those who love you. Find happiness and peace and a place to be safe in your friends and family (whatever your definition of family is). Give to them as they give to you and everyone’s load will be lighter. I could go on all day about this one. Just know that in every hard moment, and in every good one, the people you love will make it better. And remember not to only call them when life is hard. Definitely call when life is hard, but also when life is normal or happy. Share all the times, not just the bad ones. My husband’s family is better at this than I am. They make time to get together, they drop by each other’s houses for coffee and tea. They see each other all the time. I have been trying to work on this more – getting together with people who make me happy, and children who make my son happy. We all need that in life.

I know that none of this is easy. Again, life isn’t easy. It’s messy and it hurts and it brings you to your knees sometimes. But it’s also beautiful and full of love and beauty as well. Life is brutiful. Live it accordingly.

** You’ll forgive my lack of knowledge about this episode of Grey’s Anatomy, I hope. I never was a devoted follower and I was so sick I didn’t know what was going on around me. In a thyroidless induced walking coma. If any devoted fans know this episode I would love to watch it again. It may or may not have been around the time of the “red mist” episode in which there is a bomb in the hospital – I remember watching that episode in the weeks I was there as well.

A spoonful of sugar part 2. A happy ending.

So, a couple days ago I was kind of falling apart. Feeling isolated and alone and frustrated in general. I got some support on Facebook after writing about it. Here is the post about my son’s medicine kerflufle: https://fishjello.wordpress.com/2013/06/15/a-spoon-full-of-sugar-doesnt-do-crap/

This week I am feeling much better about it and about how I handled it.

First I sat down and wrote my son’s doctor a letter expressing my concerns and giving her the name and numbers of our therapists in case she is interested in educating her staff more. I pointed out many things about this whole “force your child to take medicine” thing that made me upset and uncomfortable. I told her I really love her and her staff and really trust them, but that we feel this was dealt with very inappropriately and why.

Second, I talked to my son. I told him that I was not going to force him to take the medicine, but that if he gets more sick we may have to get a shot or something like that. He understood and had already told me that he thought a shot would be less scary than facing the medicine twice a day for 10 days. He even thought the hospital would be less scary.

I talked to him about personal boundaries and about how our bodies are only ours and no one else’s and that I was proud of him for telling me what was scary and uncomfortable for his body. I told him that anytime something feels scary or uncomfortable within his personal boundaries that he should talk to me or his dad about it. I did tell him that sometimes in life we have to do difficult things – like trying new foods – but that mom would never MAKE him do anything that really scared him, and that I respect his personal needs and space. (I don’t know what we will say if it ever comes down to a surgery or something that has to be done but is terrifying, but we will cross that bridge when we get to it.)

It was very interesting because after this discussion we decided to try to get out a little bit yesterday and were at a place with other kids we didn’t know. He started playing with some girls, but he was playing in a way they didn’t like. He was chasing them, even though they asked him not to and after I talked to him about not chasing once he even started pulling on them or trying to pin them down. I stopped him and made him stop playing until he could control himself. I had him apologize to the girls for not listening to them and respecting when they asked him to stop, and I made him leave them alone so they weren’t more uncomfortable. He had to go play in a different area of the play place because he had made them feel unsafe. He understood why and he felt badly about making someone feel unsafe. He was able to get back under control and we talked about it after we left again. I told him even if he gets over excited it isn’t ok to touch other people or play with other people in a way that feels bad to them. I explained to him that just like his body tells him when he is scared or uncomfortable, so do other people’s bodies. I talked to him quite a bit about how when someone asks him to stop or tells him no or even seems uncomfortable (but maybe can’t say stop), he needs to stop doing whatever it is that makes them feel bad. And if they are really upset, he needs to get a grownup to help and to leave them alone. I talked to him about him feeling scared of grownups making him eat or take medicine and I talked to him about how other kids get scared when they have to do something they don’t want to and we don’t want to be the one to scare them.

I came home and modified that letter to the doctor. I mentioned this incident briefly – I pointed out that if parents are forcing their children to do things that are extremely painful or uncomfortable, how do we teach them respect of other’s boundaries? How do we teach them to defend their own boundaries? If my son encounters an adult who does something that makes him uncomfortable, but has been told over and over he just has to do what grownups (even doctors or nurses or parents) say, then how will he stick up for himself and how will he trust me to realize how scary this was when he comes to tell me what happened? If he doesn’t trust me to respect his boundaries how will he trust me to defend them? If he doesn’t know that his boundaries are to be respected and honored, how will he respect and honor other’s boundaries?

I am glad I made the decisions I did. I am glad I had a talk with my son and even more glad that we had an opportunity to reinforce the idea. I am proud of him for sticking up for his personal space and I am glad he trusts me enough to tell me he is afraid.

I feel more empowered now, and I feel like maybe I can help others out there with similar problems. I haven’t figured out how yet, but I am going to work on it.

Thank you all that gave me support. It takes a village. I am glad I have a good one.

A spoon full of sugar… doesn’t do crap.

A lot of people look at me weird when I tell them my son has some “issues”. He looks “normal”, he seems pretty “normal”. They tend to think that disabilities or problems or issues should look a certain way.

That isn’t always the case.

I am very frustrated today and have been for the last few days because of one of our special needs.

My son has eating problems. (that is one of his “issues”) No one understands this. At least very very few. I have a few friends who’s kids are similar – but they are not friends who live here, I have talked a bit to them on facebook about it, and they don’t talk about it publicly all that much. The moms I have met in group feeding therapy are mostly there because their kids are diagnosed with failure to thrive or don’t chew or swallow properly. I have only met one mom who’s son just refused the majority of foods because of texture, smell, appearance or taste, and that boy had autism.

My son has sensory processing disorder. He also has a very rigid view of the world. He also has geographical tongue which affects the taste of foods – different foods taste differently at different times because of this. These three things combined have made eating very painful for him. I mean emotionally and mentally painful. He is literally afraid of eating new foods. He is terrified of vomiting or gagging (which has happened several times with new foods or drinks). He is so afraid of food that feeding him had become difficult to the point that I couldn’t live with it anymore. I fed him what he wanted and I gave up trying to get him to eat what I thought he should eat. Then he got a little older and I knew we needed to work on it for school and for nutrition. He wasn’t getting certain nutrients he needed.

I have detailed some of our adventures in feeding therapy in past posts. It hasn’t been an easy road, but we have made progress slowly.

It is very isolating to have a child with an issue that most people just don’t understand. My family, for the most part, thinks I should either just make him eat what I make, or that I should just deny him other foods until he will eat the food I want him to eat. This doesn’t work with him. My in laws say I should have held him down and force fed him as a baby and toddler and now he would be normal. My mother in law tells me this at least twice a month. It doesn’t matter how many times she sees him gag at the smell of food or freak out at foods, she keeps telling me I basically failed when he was younger. Never mind that this didn’t start right away when we started table foods, that this was a progressive self limiting of the diet over time. It doesn’t matter that when I tell her that most of our culture thinks force feeding is abusive….. It doesn’t matter that she force fed her son, yet she admits he was a very picky eater too. Friends and acquaintances look down their noses at me when I get my son only french fries and juice at a meal out. They think if I just got him the nuggets or hamburger or taco salad or mac and cheese or whatever he would eat it.

It really hit home one day recently when my son had a homework page that asked him to tell what his favorite food was and describe why it was his favorite food. He got anxious and said “I don’t like food.” We had to talk for a good 15 minutes about how he does like some food. That pizza and ice cream and cheese and Hershey’s bars are food and he can choose one of those. It was like a light-bulb came on. He didn’t realize he liked any foods. Food has been his nemesis for so long that he hadn’t thought about what foods he does like.

Well, this week it all came down on us and this experience has left me exhausted and feeling more isolated.

My son was really sick. He had been sick for over 10 days and started complaining that his back was hurting from coughing so I decided it might have turned into infection and we needed to see his doctor. We went in and she said he had a sinus infection, possibly a throat infection too, and prescribed antibiotics.

We got the antibiotics and went home. We tried to take a dose of the medicine and it was a huge problem. This is the first time we have had this problem. He never loved medicine but he would take it. He takes the meds he has taken for a long time. He did have a very nasty acid reflux medicine in the fall or winter that made him vomit, but I didn’t make him take more of it after the first dose – I had tasted it and decided I couldn’t have kept it down either. We got a different med and he took that, so I thought it was all behind us. I was wrong. He is now afraid of medicine and afraid it will make him gag or throw up. The antibiotic wasn’t bad tasting to me. I struggled to get a dose in him for several hours and I couldn’t. He was terrified. He was crying and shaking. He was making himself so upset that when he did actually get some in he threw it up. I put it in juice which didn’t fool him. I tried it with some other foods he will eat like apple sauce. Didn’t work. I called the doctor the next day and asked for advice. The first thing out of the nurse’s mouth was “you are the boss and you have to make him take it.” Like I was some person letting my child walk all over me. I said “well… he already has feeding issues. We have been in therapy for over a year for it. This isn’t just your normal case of “make him do it.” She gave me one decent suggestion and told me to call our feeding therapist. I emailed the feeding therapist with the suggestion of taking the medicine with chocolate ice cream because it might mask the flavor. She called me and had me bring him in with the medicine and ice cream. She had dealt with this before. The feeding therapist tried 4 different “delivery methods” and it took 45 minutes to get one dose in him. She decided that he was too upset and this was just going to set us back, so she called the doctor and asked them to try chewables (which they didn’t even know were still being made.) Chewables that night were just as difficult. I spent 3 hrs trying to get it in, I told him he would have to get a shot if he couldn’t eat it. The therapist said he might have to go to the hospital if he didn’t take it. I did every single thing besides hold him down and force him to eat it. He vomited up the little I got him to chew. He was terrified, feeling guilty and feeling isolated. The next morning I called his doctor and explained to another nurse (the first nurse wasn’t there) what was going on. I asked them to just give him a shot – that he told me that would be better than taking medicine. I waited for hours for a call back. Finally I called and got a different nurse or assistant on the line who told me to just sit on him, dribbling the medicine into the side of his mouth slowly so he couldn’t spit it out. I tried once more to explain that this wasn’t a normal case and that this wouldn’t help the situation. I told her he wasn’t spitting it out, he was vomiting it up. She had the nurse I talked to in the morning call me back. She said the doctor suggested the same thing. I can’t tell you how upset I was. I have spent almost a year and a half and a lot of money building up trust with my son surrounding food issues and the things that go into his mouth. I told her I would not be holding him down and forcing medicine in his mouth for this reason. Even after our food therapist called and told them that this was setting us back they still didn’t listen. I decided to wait until Monday, see how he is feeling, and if he isn’t better to go back into the doctor’s office and talk to them face to face. The nurse even offered for me to bring him in and have them force him to take the medicine. I said “first of all, I will not allow someone to traumatize my son when we have worked so hard on this. Second of all, what do you want me to do, bring him in for the next 19 doses twice a day?” She saw the flaw in her idea.

I am so frustrated about all of this. Even my son’s doctor – who knows us well – doesn’t understand what he goes through with food and feeding. They seem to think it’s all just ridiculous and that if I just tried harder he would be eating normally. If they could come to ONE therapy session and see his anxiety and the work it takes on a daily basis to get him just to bring new foods to his lips, they might understand a LITTLE. To compound all of this, the sensory processing disorder he has isn’t recognized by the schools or the medical community as something that affects his life enough to need help from the special ed department. I and hundreds (if not more) of other parents with kids like this know it does. Know that learning when everything is too loud or too smelly or too invasive of space or when he is particularly “unorganized” can be close to impossible. You can’t imagine how frustrating all of this is unless you have been there.

I have mostly stopped talking about his feeding problems. Mostly because people treat me like a bad mom or a push over. I don’t want to deal with that if I don’t have to. People I love very much (and more than one) have said “I just make my kids eat what I say.” Which really hurts my feelings honestly. I try my best and force feeding him will only cause more problems. Some kids aren’t traumatized by that. My kid is. I think force feeding an upset child is abusive in any case. It undermines the trust in the relationship and it causes a bad relationship with food. But in my son’s case it could cause serious longterm setbacks in our progress.

I am not a perfect mom. I have been the mom who just fed my son what he would eat because I had given up. I am not that mom anymore. I work very very hard to help him expand his diet and we have made big strides. But today I just feel lonely and frustrated and I hate everything that has to do with feeding/medicine/drinks/eating. I feel inadequate and misunderstood and angry at the medical community excepting our therapists. This may have set me back as far as it did him. Excuse me while I go curl up in a ball and hibernate for a few hours until I can face food again.

Summer Time With Special Needs

When I was told my son had some special needs, I wasn’t devastated. I had grown up around people, including my mom, who worked with kids who had special needs of one kind or another. I had also worked with kids who had special needs myself. I knew a few people with kids who had special needs. My son’s needs weren’t extreme and we can do a lot to help him. As our journey has progressed we have learned he may have a few more needs than we originally thought.

We have started doing more and more therapies and therapy related activities suggested to us by his specialists. We do therapies at home, but the therapies where we go into an office or other location for an hour or two a week are obviously the most time consuming.

I haven’t ever felt sorry for us. We have met many families in our therapy sessions who have it much harder and who’s kids have to struggle much more. I have met parents who will effectively have “children” the rest of their lives, or who have 37 year old or 42 year old children who still need to be dressed, groomed, bathed, carried, etc. I just see my son as perceiving the world a little differently and needing some extra support. I consider us pretty lucky on a “special needs severity” scale. (I made that up, by the way.)

Recently though, I felt a little bad for my son. Looking at this summer I was trying to decide whether or not to do a few day camps for him. He has really enjoyed them in the past. His first summer after preschool the specialists had suggested we do summer day camps to help him keep socialized. He did camp Monday through Friday almost the whole summer. He really did enjoy it and it gave me some time to myself in the mornings so I didn’t mind it. Last year we did a week long day camp 6 times, 2 therapies a week, and were out of town quite a bit. I felt at the end of the summer like neither of us had had much of a break.

This summer I don’t think we can do any camps. He has more therapy now, and we are hoping to do an extra one that only meets in the summer. He has 2 suggested therapeutic activities that meet 3 times a week altogether. We are going on 2 fairly lengthy vacations and we are going to sign up for first grade boot camp. That is a week long camp they do to help kindergartners get ready for first grade. At this point we already have therapy/activities 5 days a week and we are adding one. I have been worried about being able to do all of our therapy/activities next year when he is going all day to school, so I don’t want to pull him out for summer. Also, therapy is most effective at a younger age.

As my husband and I were discussing this, I realized that this is how parents who have kids with more severe special needs must feel. I know 2 families who have 2 kids in 5 therapies a week each. I don’t know how they do it. They can’t take off the summer or their children will stop walking or talking. They can’t loose that ground. They run around to therapies all afternoon and evening long. They are exhausted by simply taking care of their child’s daily needs and then they do all this in addition. Many special needs children are encouraged to attend summer school as well because they fall so much further behind than regular needs kids. One of these families takes a month every July and goes to the beach. They rent a beach house, the mom takes her 3 kids – 2 with severe disabilities – and they spend 2 weeks there. Then her husband meets them for 2 more weeks. She said all they do is sit on the beach/play in the water or play in the house the whole time. They don’t sight see, they don’t go touristing. They rest. I didn’t understand why she needed this until now. I am glad she gives them ALL a break from the hustle and bustle of therapy and school and everything else.

This is the first time (besides when the bills for therapy and activities roll in) that I really felt the impact of having a special needs child. It is discouraging in a way, though I know it helps him and I know he will be better off because of it. It makes me a little sad that we can’t just stay home for the summer and play in the sprinklers and go to the zoo. My mom had summers off because she worked in the school system. Some of my best memories are of playing outside all morning, coming in for lunch and maybe a break in the air conditioned room with the TV when it was really hot, and going straight back out for most of the rest of the day. Mom would do her mom stuff, and keep the Kool-aid handy. But she would also read a lot and get a little rest in herself.

Maybe one day we can have a summer like that. If we don’t, that’s ok, but I do feel a little guilty and saddened that our summers haven’t been like that so far.

Food Therapy

My son is a picky eater. I know what you are thinking – all little kids are picky. This is beyond that. He eats 3 meals: spaghetti with marinara, eggo blueberry waffles, and dominos cheese pizza. That’s it. Everything else he eats are sides – cheese, frozen gogurts, fruit, cucumbers, crackers, etc. It had become a problem. He wasn’t getting the nutrients he needed, even with vitamin supplements. I grind meat up in his spaghetti sauce with the Cuisinart and make special cookies that have beans and nuts pureed in them to help with iron and protein. I read every parenting magazine that claimed to be able to “help you feed your picky child.” And those magazines made me feel like a failure. These people were talking about edamame and humus. I can’t even get my child to eat pancakes.

My in laws made me feel like a failure. Their toddlers were walking around eating dried fish with bones in it at barbeques. My son wouldn’t eat the cucumbers if they weren’t cut right. Most of them force feed their child as a toddler. I don’t agree with that – I am not going to sit and hold my son down and force feed him. In fact, when we were in Russia I got very angry with my MIL for doing that. I don’t think it’s healthy. But still, my son wasn’t eating anything and I didn’t know what to do. I knew what I didn’t want to do, but I couldn’t fix this problem.

I was at my wit’s end and I didn’t know what else to do. Now, my son has sensory issues – his main problem with foods is texture, smell, and taste. (I know – that’s all of it.) I had read about food therapy and decided we needed to ask his doctor. At his last well check I asked about it. She referred us to the children’s hospital, they did an evaluation on him, and we got into the food therapy clinic. In food therapy an OT helps figure out what the issues are, and how to fix them.

He has always kind of had feeding issues. He had a hard time learning to nurse, and then I had to stop breastfeeding due to cancer treatments and he had a hard time with any nipples except a certain type. He never got past the newborn nipple – he would gag and spit up and cry with the nipples with more flow. He ate baby food pretty well. But I was really sick and couldn’t make fresh food most of the time, so we just used jar foods and while those are healthy, they weren’t the same flavors as what we normally eat. I wish I had just ground up our food for him. Getting him off baby food to solid food was very stressful for him. At one point he really ate well – pretty much every thing I gave him, but then he started eliminating foods and it became a struggle I couldn’t deal with. In fact, I got so frustrated with meal times that I just gave up. I stopped making family meals since my husband came home late (and later his mom came and she makes the foods he prefers). I stopped eating at the table with him, we just ate in front of the TV. I stopped trying to get him to eat other foods. I just couldn’t handle the frustration. We adapted to him instead of continuing to challenge him and get him to eat more things.

So, food therapy – I have had some questions from friends about what we do. I am not an OT, and having someone to go work with, having someplace that isn’t home to do this work has helped a lot. He fights less with her than he does with me. But I will share what we do, what we have changed, and what our techniques are at home.

First the new rules: 1. we eat at the table as a family. Right now that usually just means me and my son except when his dad is off. His grandparents eat on their own schedule after work and such. 2. I choose what to serve, he chooses what to eat. I don’t force him or struggle too much with him about what he eats. Every meal has SOMETHING he prefers so he doesn’t go hungry. 3. We put the food on the table and pass it around (or in our case serve ourselves from the bowls) – “family style”. We both put some of everything on the table on our plates. It can just sit there if he doesn’t want to eat it, but I try to have him spear it with a toothpick or something. He at least looks at it and smells it. I have gone back to divided plates for him (like toddler plates with dividers) because that makes it much easier for him – not such bad anxiety over foods contaminating “his” food. 4. Eat on a schedule. He isn’t allowed to graze. I always just gave him a snack when he wanted one. He isn’t allowed to just eat when he wants. He eats breakfast, snack, lunch, snack, dinner, and a snack if he needs it. He has adapted well to that and I rarely have to say “you need to wait for snack” anymore. If it’s within half an hour and he is starving I am flexible with the time, as long as he isn’t just walking around eating small snacks all day.  5. change the way you talk about food. Correct statements like “that’s yucky” or “I don’t like that” to “I am still learning about this food.” And even with you, don’t turn up your nose to something at a restaurant, or at a friend’s house. Be positive about food. If it is something completely new, we use the phrase “that surprised our tongue. Remember, our tongue has to try a new food 10 times before it knows if it likes it or not.” Also when anxiety arises, saying “you don’t have to try it, we are just LEARNING about it.” Eventually you get to the point where you have to push more and then we stop just learning about it.These types of phrases helps disperse the anxiety.We also say “I think your eyes are tricking you” if he doesn’t want to eat it when he just looks at it. Our biggest rule is “you don’t have to eat it, but we are going to learn about it.”

Desensitization: Kids like my son need some help to get over the struggle with foods. He has so much anxiety around foods. So we do it in steps, we let him get to know the foods before he actually tastes them, and we take it slow.

Some of the things we do for him to get used to food was hard for me at first. It’s messy. It’s not pretty. It’s everything you don’t want in table manners. The therapist said some families just play with food at snack and say dinner is time to practice being polite and using our manners. I use the techniques at every meal because it makes it easier for him to interact with different kinds of food. The order of desensitization is: sight, smell, touch, in depth touch (like pulling it apart, crumbling it, squishing it), touch on the face or head, kiss, lick, bite, chew, swallow. Those are all separate steps.
Our therapist said that kids need to step up slowly to eating new foods. We start with what it looks like – if I serve something new he might not even want it on his plate, but we are getting past that. We put a little on his plate. We will talk about what it looks like. What color, what textures, do we think it might be crunchy or soft or gooey? Then we have him smell it. At first even that made him so upset. Now he will smell anything. We will compare the smells to other foods we know. Then we start with touch. We do a lot of messy projects with food. Pudding finger paints, crunching up cheetos or veggie sticks (like potato chips kind of, but made with more veggies, different colored, and stick shaped – less fat too), putting goldfish crackers in our jello or fruit, chopping, mixing, feeling, crumbling, getting totally messy with the food. Just exploring the textures and smells and stuff. She said they need this – they need to feel what the food will be like in their mouth before it gets to their mouth. It’s messy. And it’s hard for me to let go of that sometimes. But we do it. I bought some of those sword toothpicks, some fun bowls and utensils, etc for him to play with – and I have him help me cook which he likes – this all desensitizes him to the foods before it ever gets close to his mouth.
Next step at first was touching it to his face or head. He didn’t want it near his mouth, and we were mostly doing things like crackers or veggies sticks, nothing extremely messy. He would bounce it on the top of his head, or tap it on his ears to a song, etc. Eventually she would have him tap his lips or teeth. This was much more fun and less threatening than “try it.” We have eliminated this step for the most part. He has gotten to the point where he will put the food to his lips without freaking out.
So now we start putting it to his mouth by kissing it, then licking it, then finally biting it and allow him to spit it out if it’s too strong. After he has been exposed to a certain food in several of our “sessions” at home or in therapy, we move on to “take 3 bites with chewing and swallowing. This is still difficult for him. This is still a struggle. But I remind him that he KNOWS this food, I remind him that this food isn’t scary. And he has gotten to where with most things he will do it without too much of a struggle.

An important thing to remember is to try to branch out from foods your child already eats. If it’s somewhat similar it will be easier to make that transition. They call this “food chaining”. For example – if your child will eat spaghetti with marinara sauce, start trying differently shaped noodles. Then you can try different sauces. We are trying this right now with mac n cheese. He will eat macaroni noodles with marinara on them, but not cheese sauce. We have let him put some marinara on the mac n cheese and it helps him tolerate it more. If your child likes waffles you can try pancakes, blueberry muffins, french toast, etc – other bready breakfast foods.

Some of the best things I have learned:

Kids think that they only like ONE KIND of thing by sight. Like he will only eat square graham crackers and not any teddy grahams or grahams shaped like spider man, etc. So we take that one food he likes, and put 3 different “types” out to taste test, play with, explore all at the same time. He eats eggo blueberry waffles. We have tried plain, strawberry and are now going to try chocolate chip. We did different flavors of applesauce. He only liked one kind of string cheese. I got him to try another after a lot of work and playing with it and looking and touching it, and he liked it. He would only try it after we had done several of these types of activities – because he thought if it looked a little different or had a different package he wouldn’t like it. We talk about how these things are the same. With the cheese: it’s the same color, it’s the same shape and size, it feels the same… etc. We tried different colors of jello, kix cereal now has a couple different flavors, cheerio shaped cereal like Fruit Loops or Apple Jacks. She said even different types of fruit snacks, etc. Just to desensitize. Different types of ice cream, different types of cookies – she said don’t worry about how healthy stuff is at this point – i mean, still try to get a balanced diet over all – but let him try different snacks, deserts, etc – just to show him not all new foods are scary.

We mix foods we already know with new foods to make them less scary. One example: when we tried new flavors of applesauce he used graham crackers to dip in it and eat off the cracker. He already knows graham crackers. And it was less applesauce at once mixed with something that isn’t scary. Right now we are trying for mac n cheese. He eats most kinds of noodles (macaroni, spirals, spaghetti) with marinara sauce. But won’t try cheese sauce or alfredo sauce or anything. Right now he is helping me make mac n cheese, which I eat, and he puts marinara ON TOP of the cheese sauce on his plate and mixes it in good and then he can eat it. If it doesn’t have marinara he gags. I don’t know why. We have used one of those nut chopper things that you put the food under and hit the top of to chop up crunchier items and mix them in with the food that was new. He loved the chopping. He likes to peel and cut veggies up too. I was amazed he would do this mix in activity because he hates his food to touch. But he did – he crunched up veggie sticks and put them on noodles, today he made crumbs out of cheetos and put them on his mac n cheese. He crunched up the veggie sticks and crunched cheetos into them when the cheetos was new. It was more veggie sticks than cheetos and then they did “puppy dog licks” where they lick their finger, dip it in the pile of crumbs, and lick the crumbs off their fingers. It helped with the taste, texture, etc.

Change the shape of foods. Since he was so worried about packaging, what color or shape things were, since he had such a set idea about what “his” food “looks like”, I started changing the way his foods look. I would cut the waffles with cookie cutters to change the shape – I cut pizza into squares or stars or different shapes. I did different colors of a similar food, I did bigger sizes, smaller sizes. I used fruit cutters to make balls or differently shaped slices out of our fruits. I mixed cut up strawberries and bananas in the same bowl. There are lots and lots of ways to change how food looks.

Another fun thing the therapist did (and kind of gross) is she had like a medium sized mixing bowl and when he put something in his mouth at first they “blow rockets” with them. Like put them in their lips and them blow them (spit them) into the bowl. And call it blowing rockets. Then he is tasting it, touching it, getting it to his mouth for fun. I have done it at home with a few things he was really worried over.
Also just playing with it. Like the mac and cheese, we made smiley faces with it. Because he hates those stickier textures. It helps him to touch them. We did frosting on graham crackers with our fingers, we did jello to squish in our fingers. We did painting with those cheese and pretzel packs you get at the store (the ones where you dip the pretzel or tiny bread sticks into a cheese sauce).

We give him “choices” like do you want to take an ant bite or a birdy bite? Then we move up to a bigger bite – the biggest is a t-rex bite and it’s huge. I will also say “are you going to lick it or kiss it?” or “are you going to take 3 bites or 4?” He feels more in control. If your child has a problem with getting her fingers in the food, or getting their fingers messy, keep a wet washcloth beside her – that helps us too. He doesn’t like the juices or crumbs or whatever on his hands.

We have several things we say when the anxiety starts to get bad. We say things like “what’s going to happen if the taste “surprises” you?” (we never say “if you don’t like it”) I will say things like “is it going to bite your nose? Are you going to explode? Is it going to hurt you somehow?” and he laughs and says no and then it breaks the concern and he feels better about it. Important- if you seem frustrated and anxious (which I always was about food) he will get frustrated and anxious. He has to see that it’s just food. It isn’t a big deal. It’s just fuel for our bodies. Help your child take the control factor out of it without you being in control – that can lead to more issues later on – anorexia and stuff. It’s JUST FOOD. It’s no big deal. That’s how we approach it now.

My goal is to have him eating something he can take for lunch next year. We aren’t there yet. I mean, he could take stuff. I have plenty of “meals” I have made up over the past couple years – crackers, cheese, cucumbers, a fruit. And at camp for a few weeks this summer he took spaghetti and ate it cold. But a sandwich or a wrap would be awesome. He won’t be buying hot lunch for a while, I guess. Maybe on pizza day if it’s the right brand

It sounds like a lot of work. At first I was like ????? After our first appointment I was so stressed out. It felt like something I just couldn’t do. Changing the way I have been doing things for the last couple years? How would I manage. I think most families probably eat more meals together and haven’t given up cooking family meals like I did. So some of the work is already done for you. It will be the playing, the steps, the waiting until he/she is comfortable with the food to actually have them taste it. That part is the work. But it’s worth it. Yesterday my son ate meat at food therapy. Real meat. That wasn’t pureed into his marinara sauce. I am going to start pushing him a little more, start really trying new things. Soon, he will be eating stuff I never imagined he would eat. Then this morning when he went to give his dad a hug and his dad had been eating a piece of cheese on toast, he freaked out that his dad’s fingers were dirty and getting “that yucky food” on him. We still have work to do. LOL

Remember, this might not seem like it needs to be so anxiety ridden to you. You may not understand WHY your child can’t just eat normal foods. You may not understand why one food is just fine and another is not. But you don’t have to understand. Just try to be kind, don’t force, and remind them it’s JUST FOOD.