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.

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6 thoughts on “A spoon full of sugar… doesn’t do crap.

  1. You are not a bad mom at all. You clearly care a lot about him, his needs, and his boundaries. I wish I could offer more than words that feel a bit hollow and ineffectual from this end, but…

  2. I know a couple who have 2 children who have special needs and both work full time. I really don’t know how they do it. It seems that getting the children to be on task is a constant. They have to have supervised homework daily. Planning ahead is critical to helping the boys have a normal life. I can’t imagine how taxing and frustrating that this all has to be. I don’t think they know a lot of people that have children with these sort of problems and I know they are protective of them because ignorant people as you know like to judge. Your struggles may be unique but know there are many parents out there dealing with children that have complicated issues. I feel for the children who have to deal with being so unique in a very judgmental world and I feel for the parents who constantly struggle with the overwhelming feelings of guilt, frustration,depression etc. I admire this couple very much because above all it is obvious they love their children and would do anything for them. You are a SUPER mom and are doing the best you can! Hugs ❤

    • I know several people who have kids with much more severe disabilities than my son. I even know two couoles who are now grandparent age and take care of children who will never be adults in body or mind. They have taken care of them like you take care of infants for almost 40 years. I know our struggles are small in comparison to some families. But they are struggles I want to help with so his school and life is a little easier…. we all just want the best for our children.

  3. Pingback: A spoonful of sugar part 2. A happy ending. | fishjello

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