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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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.

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.

It doesn’t have to be all or nothing.

Hmmm. That’s weird. Cause in my life it always feels like that. And that’s half of my problem.

My son starts kindergarten in a little over a week. This week he went to “kindie camp” which is for new kindergartners to kind of “learn the ropes”. He did really well 3 days (really really well today) and not so hot the other day. And guess what? I was sitting on the couch last night crying. In part because of his bad day at camp and how worried I am for kindergarten.

See, it’s not JUST kindergarten to us. It’s his first year of real school. It’s his first chance to really love learning in a formal setting. He loves it at home and I don’t want to loose that. It’s his first chance to get to know the kids he will be with for the next several years. And make friends. And not be “that weird kid.” It’s his first chance to really be on his own without an aide or specialist shadowing him all the time like they did in preschool. It’s his first chance to show himself he can be independent. It feels like a lot of pressure for an almost 6 year old, and for me.

Today I realized he is either picking up on my anxiety or has his own anxiety about school. Every day this week he has worried about being late. Even though we are never late. Today he asked me to drive him because it’s what we normally do. (we drove to preschool, or he rode the bus and I drove him home.) We live close enough to walk and we will on normal days because the drop off line is just too ridiculous for me to deal with… but right now there isn’t much traffic there. So we drove. In the car he asked me several times about if he will have friends, talked about how hard it is when he gets angry, etc. I feel badly that a kid has so much anxiety about kindergarten. He is excited too, but he is apprehensive like me.

Then I thought about it.

Guess what? It doesn’t have to be all or nothing. It doesn’t have to be perfect. It’s ok to have good days and bad days, and I am going to try to tell him that, without giving him permission to act out or throw fits or get in someone else’s face. I mean, come on, I have good and bad days all the time. Weekly. Some days part is really good and part is really bad. That’s life.

I just hope I can help him to cope with the bad days in a positive way and to enjoy the good days.

That’s all any of us can do, really. Right?

Feeding Therapy

Wow! So I posted on Facebook that our son’s feeding therapy is actually helping – baby steps right now. I recieved the biggest response! People asking what we do, people private messaging me to see if I could give them ideas or links on the internet. I had at least 15 responses.

I decided it might be easiest to write in a blog and post that.

The thing is, when your child doesn’t eat “properly” it really makes you feel inadequate. Other parents try to tell you what to do for him. Most of the time you have already tried those things and they didn’t work. Which makes you feel even more inadequate. The doctor tells you what to try. It doesn’t work. You get parenting magazines with articles that have titles like “How To Get Even The Most Picky Eater to Eat Healthy.” You open to that page and find suggestions on how to make Quinoa more appetizing or how to make smiley face whole wheat pizza rolls. Your child won’t go near one food in this article and you close the magazine with a sigh, feeling even more defeated. Pretty soon you have given up and just feed your child what he wants, because then at least he is eating. But inside you feel alone and scared and like you are the worst mom ever.

Some children have trouble swallowing or chewing. Some have troubles with the concept of eating.

My son has sensory processing disorder. He has a very hard time with eating. Certain tastes, smells, and textures bother him a lot. He gags at a lot of smells and has thrown up with some mushy textures like oatmeal. He was a normal eater as a baby and early toddler when we first introduced table foods. Then he slowly narrowed down what he would eat. He now eats 3 main dishes and a handful of side dish type things – as well as some fruits and cucumbers. He also has geographical tounge – which I am told contributes heavily to his ability to taste even small differences in foods (he knows if something isn’t the right brand by taste).

We started going to feeding therapy because he just isn’t getting enough nutrition. Thankfully he gets enough calories and is growing normally. We know a family who’s son has had to be put on a feeding tube because they can’t even get enough calories in him. He is 4 but is the size of a 2 year old.

Let me state I am not an occupational therapist. That is who we see, and she is great. But I will share the things we are doing at home to help and maybe that can help y’all.

First: the rules.

1. The family eats together, food is served family style at the table. (many parents in our situation get so frustrated with meal times that they just stop having them – and let the child eat when he wants, often in front of the TV or at least where he eats the best).

2. The adults choose what goes on the plate, the child chooses what to eat. (make a meal, then serve it with some of the child’s preferred foods. Some of everything goes on the plate, but the child chooses what he eats. Divided plates may be necessary to avoid melt downs, or a “trainer” plate – a salad plate on the side where he can put the non-prefered foods. Most of these kids are afraid of “cross contamination”.)

3. The child helps pass the food around the table – don’t dish up at the stove, put it in bowls, etc ON the table and pass it around like you did when you were a kid at home. This way the child sees and smells the food.

4. If the child touches or plays with the food, let him. That is part of learning about food. I know – it’s gross and you don’t want him playing with his food. He needs it.

6. Don’t be negative. It’s hard not to. Don’t turn your nose up when he plays with his food, don’t get frustrated when he spits out a bite after trying something new. That is allowed. He needs to feel safe. Always say “you can try it and spit it out if you don’t like it”. Don’t lecture about the child not eating. I recently gave him a huge high five and a hug after he tasted a piece of pizza and spit it right next to some grandma’s feet.

7. The child sits at the table until allowed to leave.

8. Don’t force feed.

9. No tv, movies, games, etc during meal time.

10. No grazing – the child eats at specific times every day – 3 meals and 2 snacks if you can. You don’t have to be too rigid – if snack is at 10 and he says he’s hungry at 9:45, it’s ok to bend the time a little. Older children should be able to wait a few minutes for snack or meal. (“It’s almost meal time, have some water and I’ll let you know when it’s done.”)

11. Take things out of the package. Some kids, like my son, are very visual. If he sees the “frigo man” on his cheese stick instead of the “kraft” logo, he won’t even touch it. Taking things out of the package should help desensitize that.

12. Let them help prepare food and clean it up. My son will cook for everyone else, but doesn’t want to eat it – that’s ok, he is smelling and touching it and that is important.

Second: dialogue.

This has been an eye opener for me. Before when my son would say “it tastes different” I would just get him something else. Now we are talking about food. All the time – not just at the table. This causes some anxiety some days – just the talking. Try to be positive and help their inner monologue about food change. Some of the things we have learned: If he says it tastes different, talk about whether it’s a big difference or a little difference in taste. At first he will say “big” about everything. But we just keep trying to help him change that inner talk by saying “really? I think it’s a really small difference”. Talk about what will happen if he tries something he doesn’t like. Will he explode? Is it going to eat his nose off? Is it going to make the house fly away? Silly things that cut the anxiety and make him realize that even if it’s uncomfortable, it won’t really do any damage. Also talk about the food itself – what texture is it? What color? Does it smell like something similar that we like? For example, does he know that pizza tastes kind of like spaghetti? Talk about similarities and differences. They may be obvious to you, but they are not to your child. I never let him say he doesn’t like something he hasn’t tried until we talk about it. Always stress that we are still LEARNING about the new food. Stop letting people talk about what a bad eater your child is. I say “We are learning about foods right now. One day maybe he will like them all.” And then I may have to ask them later to stop saying negative things in front of my child. Most of my husband’s friends and family do this – talk about what a bad eater he is right in front of him. If someone says you are a bad athlete every day you will get it in your head that you might as well give up on athletics… same with negative talk about food.

Examples: “You don’t have to do anything you don’t want to do” “Is it a big difference or a little difference?” When he says he doesn’t like something new but hasn’t tried: “No, we are still LEARNING about this food. Our tongue doesn’t know if it likes something or not until we try it 10 times.” “Did that surprise your tongue?” “What makes you worried about this food? We are just going to learn about it.” “this food is a lot like ______. What can you see that makes it alike?” Say “you can” instead of “can you” because if it’s a question the answer is going to be no. I say “You can spear those with your sword.” or “You can try that cucumber with the apple.” We have even recently been talking about how “brave” he has to be to try new things – like some of his favorite super heroes or the girl in the movie “Brave”.

Activities we are trying at home:

The order of desensitization usually goes like this: sight, smell, touch, touch part of the face, taste. So we started out by just putting some new thing in front of him. We started with “veggie sticks” at feeding therapy – they are 3 different colors, look different than most foods we eat, and have little taste. In fact, they kind of taste like potato chips. This is the one he will eat now. The good thing about these is they can be used in a lot of ways. She had to start by just letting him leave the sticks in front of him on a plate, not pushing them away. We talked about how they looked. The colors, the shapes, etc. Then they crunched them up into “puppy dog food”. They used their hands at first, but after about 4 lessons she let him start using a chopper for things we have already explored with our hands. Then he smelled it. Then she did the impossible. She got him to put the sticks to his mouth. First he just kissed it and freaked out that there was salty stuff on his lips. Eventually she got him to put it in his lips to make “rockets” out of them and he spit the rockets into a bowl. Since he is a boy he liked that. But it gets the taste into his mouth and the smell and helps to desensitize him. Eventually he licked them and even licked the crunched up part, now he will eat them. THEN she used them to branch into new things – crunching up some very small part of something else (dried fruit or pretzels) into the “puppy dog food” and then licking it again. Talking about if we could taste the new thing, or if it tasted different.

Back to the at home stuff we do (wanted to give you a background).

~ We start with something he already eats. Say graham crackers. He will eat the regular graham squares, but won’t touch teddy grahams. I bought some teddy grahams and some graham crackers shaped like spiderman. I put them all on his plate at once and that was what we had for snack that day. He crunched them, stacked them, and did a taste test with them. He still didn’t like them, but didn’t freak out and tried them. We also shot rockets with the teddies.

Applesauce – we got different flavors of applesauce to taste test. He now eats those.

Cereal – he likes honey cheerios – I will try another flavor next.

All of these things have to be repeated over and over again. We ate graham crackers for 2 weeks for one snack.

~ We tap our lips or our nose or our ears with a food – a cracker for example – and sing a silly song, “tap tap tap, I can tap my nose… tap tap tap, I can tap my teeth…”

~ Use something he likes to try another food. For example, if your child likes pretzels, use the pretzel to scoop up applesauce instead of a spoon.  Use bread sticks to color with pudding. I saw on pinterest today an idea to cut sticks of celery, put peanut butter on the end, and use it like a “fishing pole” to pick up goldfish crackers.

~ Toothpicks. So he doesn’t want to touch the mac and cheese. Who can blame him? It’s on his plate with something else he likes, so why not use that opportunity? Have him stab the mac n cheese with a toothpick. My son especially likes the sword shaped ones. See how many he can stack on it. See if he can make the toothpick stand up in the food… get creative here people.

~ Play with food. I know, your mom said to never play with food. And honestly, I have a hard time letting my anti messiness go with this one. But he has to touch and smell things to get used to them. So we take those little square cheese sticks and make boats out of them (toothpick for a mast and put little foods like fruits on it as the people). Paint with pudding or applesauce or jello. Make cereal necklaces.. There is a ton of stuff you can do, just let your imagination take over. We make cheese sticks into an octopus or a tree. Etc.

~ Make foods look different. I started using sandwich or cookie cutters on waffles. I have been cutting up fruit and cucumbers into different shapes. I am going to get some mini cutters to make it easier. Trying something that is a different color (green eggs) or different brand then they are used to. Changing the way the child thinks food “should be” helps a lot. Cut strawberries and bananas up in the same bowl…

My son now has experimented on his own with no suggestion from me. He made cucumber and saltine sandwiches, he tried some cucumber in the same bite as his macaroni the other day. He even tried a different brand of pizza at a party yesterday. He didn’t like it and didn’t eat it, but he tried it and didn’t freak out.

THE BIGGEST THING is to keep it up. These kids need lots of exposure. Perhaps you will have to play with teddy grahams for weeks before he thinks he likes them. That’s ok. The more he learns that he can change his ideas about foods, the more his ideas about foods open up and the more you can try. Keep at it, it’s frustrating, it’s tedious, it’s boring. But you must keep pushing with the home activities. Every single day, mix it up, change it up, change what your child is doing.

I will add some links I have found helpful here, but if you google “sensory food issues” or “feeding therapy ideas” you can probably find plenty more. OH – and look up “food chaining” – it’s the idea of going from what he will already eat to something just a tiny step away from that – to another step… Like waffles to pancakes to french toast to toast to sandwiches.

http://www.sensory-processing-disorder.com/picky-eaters.html

http://www.speechlanguagefeeding.com/category/feeding-and-picky-eating/tips-for-parents/

http://www.earlyinterventionsupport.com/parentingtips/feeding/problem-feeder.aspx

http://arktherapeutic.wordpress.com/

How to make food look fun:

http://www.circleofmoms.com/article/smiley-face-quesadillas-04722

http://kitchenfunwithmy3sons.blogspot.com/

http://www.sixsistersstuff.com/2012/01/fresh-food-friday-25-kid-friendly.html

http://www.kids-cooking-activities.com/

http://www.kids-meal-ideas.com/

Last but not least: If you think your child has sensory processing disorder, or even sensory issues (things are too loud, things are too scratchy, things are too wet, dry, mushy, bright etc ALL the time) – a general sensory diet is supposed to also help with feeding issues – you can google sensory diet and find tons of stuff, but I will also make a point of doing a post dedicated to that this week. I have had my son sucking on straws and chewing on chewy tubes, chewing on bubble gum, and filling his mouth with water as full as he can get it, then spitting it out as far as he can (outside, of course), and a vibrating toothbrush. He likes to stuff his mouth full of food and chews on his shirts or fingers, so I know he needs oral stimulation. This has seemed to help with his feeding issues some, and I am going to get a vibe stick soon – it’s a contraption that vibrates your mouth with tips of different textures…

Sleep Issues

I have had sleep issues since my late teens – started having insomnia. I didn’t have a hard time falling asleep, it was the waking up at 3 am and not being able to get back to sleep that was the problem. I do remember having terrible vivid nightmares at a young age and having to go to my parent’s bedroom if I could even get out of bed. Sometimes I was just frozen with fear. I still have nightmares off and on, but having a son has helped my insomnia – I sleep much better now, because he wears me out.

It seems my son has inherited my sleep issues. (I know it’s not from his father – he sleeps like a log any time any where.)

When my son was a baby he had terrible night terrors – it started about 8 months. He also could never put himself to sleep. We tried all sorts of “methods” but he just couldn’t do it. Now looking back I think everything was “too loud, or too scratchy, or too tight, or too loose, or too hot, etc” – that’s how he is now, but of course back then he couldn’t tell us. So, when I was at my sickest and needed my rest, we brought the baby into our bed. He had to sleep, we had to sleep. It seemed the best solution.

We moved to a new house when he was a little over a year old. He did not like the upstairs in that house. I was never sure why. He wouldn’t play in his room, he couldn’t sleep in his own bed, he cried in our bed. My husband started sleeping with him on a blanket bed on the living room floor. Yep, you read that right… That was the only place he would sleep. And my husband got up at 4 am to go to work, at which time I went to the living room floor to sleep with him. It was really ridiculous. We were still trying unsuccessfully to get him to sleep alone. He needed to touch someone when he was sleeping. He would put his feet on us and push against us. He would push his head against us.

We moved into a new bigger house and we tried to get him to sleep in his own room. To no avail. He was just over 2 years old at this point. I had another surgery and my husband tried to sleep with him in his room on a futon bed. We put a toddler bed in our room and he would sleep there part of the night and then move to our bed in the night.

He still had night terrors – woke up screaming, shaking, crying real serious sobbing tears. He woke up so upset from them he couldn’t go back to sleep. When he was old enough to tell us what they were about, sometimes they sounded terrifying “I fell into the big water and couldn’t breathe.” And sometimes we didn’t understand why they were so scary to him. Once he had the worst dream that his dad stole his cookies. His dad couldn’t come in the room without him throwing stuff and screaming at him.

At this point he was coming to our bed some, I was going to his bed some. Neither of us were really sleeping.

It wasn’t until he was 4 years old that he stopped waking up all night and started staying in his own bed in his own room for most of the night, most nights.

I decided it must be a comfort problem. I got him the most comfortable types of pajamas I could find. He liked the all cotton ones that were tight – like long johns but not textured. I bought them. (they are expensive from a specialty store) I finally decided we had to buy him a better bed. We bought a double bed with a good mattress (I mean, not a sleep number, but not a cheap one), we bought him very nice soft sheets that fit the mattress well. We bought him new pillows and rearranged his room.

All this time I had been doing the bedtime routine and the quiet time before bed and all the things the experts say to do.

Finally, finally he started sleeping through the night for real. And finally I started getting him to go to sleep on his own. It was hard work, I still had to check on him several times when he was falling asleep. But he did it.

He hasn’t had as many bad dreams and rarely wakes up at night. He has had a few big bad dreams, but for the most part he is ok.

Every time we take a vacation or something it throws off his sleeping. I try to stick to the schedule and if possible have him sleep in a bed separately from me. I try to keep him on track.

I was gone helping my mom for a week last month. His grandparents here refused to make him go to bed, so he didn’t get to bed until after 10 most nights – way later than his usual. My husband let him sleep in bed with him. I got home and felt like I was back to square one. I guess with a kid like him 7 days is just too many to let him be off schedule.

It has been 4 weeks. He is still telling me he can’t sleep alone and refuses to go to sleep on his own. It takes so much out of me and so much out of our evening.

In a couple weeks we are also going on vacation, so I know I shouldn’t push it. We will just have to go back to the way things were when we get home….

Sigh.

I took first aid.

I took first aid. I took several installments, in fact. When I was 12 years old I began going to the “young women’s” group of our church. During the summer we would go to “girl’s camp” for a week. We learned how to make fires, how to cook camp food, how to pitch a tent, how to do basic first aid. I went for 4 years, so I know how to stop bleeding. Plus I watch a lot of crime and doctor type dramas. That makes me somewhat of an expert in it’s self. 

You know how sometimes in your life you feel like an artery of your life has been cut? Like every ounce of energy is being sucked out of you by the stresses in your life? Like your basic life force is actually spurting out of you?

Do you know what the basic first aid for a cut artery is? 

Let me give you a hint: it does not involve a band aid.

This is what I feel like right now. 

As if I am trying to stop the flow of blood from an artery. With a band aid.

Well, it’s not a dog….

We have been needing to buy my son a trampoline for a while now. Now I know, most people don’t think they NEED to buy a child a trampoline, so you may be thinking to yourself “what is up with THIS lady?” or worse. But honestly, it helps his sensory processing disorder a lot – it is really good for him.

Some of you may remember the terrible/wonderful day we had when my son was crying about needing a dog.

A trampoline may not be a dog, but let me tell you, it’s pretty frakin cool.

His father saw a trampoline for a decent price at Sam’s Club, so yesterday we went to get one. Son was so excited – running around the store asking everyone he could see to help us lift it (it was a “team lift” box and you really did need a team – my husband tried… Yep I said it – my husband tried.) When we got it home he was all excited to help put it together.

I am the official instructions reader in our house, because honestly, half of the instructions are written in like Korean and then improperly translated, and then my husband who is not a native English reader just can’t understand them. Plus he thinks you can just put it together – with no instructions. Every time.

SO, I am sitting there telling my husband what to do who is half telling his father what to do (so we have to go back and fix a few things) and my son is trying to help – and doing an ok job at it really. When we get to the putting the actual trampoline mat part on I have to lecture my husband to stay opposite his father for all 96 springs – yes, 96. There is a very specific way you are supposed to put the mat on – 4 opposite “corners” first, then evenly in between those, then evenly in between those until you are down to only 2 in a space without springs – and you are supposed to do it opposite sides every time so you don’t mess up the tension in the mat. My FIL (no matter how many times my husband told him) wouldn’t stay opposite – so I am like “tell him to stay opposite – tell him to stay opposite” and my husband is rolling his eyes at both of us….

Anyway, we got everything but the safety net on by like 9:30 last night, so I let the son (and the husband) try it. He loved it and I’m sure it will get a lot of use this summer. I am a little worried about the sprinklers, and about the fact that it is really too big for our yard. But it will all be worth it when I can say “you have way too much energy – go out and bounce.”

PS, husbands, if your wife tells you a 12 ft trampoline would really fit your yard better than a 15 ft one, listen to her. Or be prepared to loose your favorite part of the yard because it is the most level part. SMH.