"Once our eyes are opened, we can't pretend we don't know what to do.
God, who weighs our hearts and keeps our souls, knows what we know,
and holds us responsible to act." Prov 24:12

Friday, June 24, 2011

Food & Eating... So Many Issues, Help Please

This was a hard post for me to write because I have a hard time asking for help. But I have been putting it off long enough so here goes. Sasha has been home for just over a year and we are still having so many issues surrounding his eating habits and food. I honestly thought it would have gotten better by this time... well to be fair, it has gotten better but it is still extremely difficult. Out of all the issues he could have come home with after being institutionalized for the first 18 months of his life... this is really the only one he has and for that we are grateful. But it is still very difficult and now I am turning to my blog for some much needed advice. I don't even know where to start because there are just so many things. Please if anyone has any ideas at all about any of this... either ideas about helping or just if you have been in the same position and want to give some support... please, please just leave a comment. I would greatly appreciate any help and encouragement we can get.

I know that as you are reading this, some might think that Sasha is just trying to control the situation or us... which I am sure he is to an extent. But when it comes to food, especially when you have a child that is so emotionally sensitive about everything involving food, there is only so much you can do in terms of being strict. We have also tried to get help from our OT and another OT that specializes in issues such as Sasha's to no avail. We are basically on our own and that is why I am asking other adoptive parents out there for help. So please, I welcome any and all advice and encouragement at this point. Here are the main issues we face on a daily basis...

*Sasha still refuses to have any independence at the table. At the beginning, I completely understood this. He needed to gain our trust and we were more than willing but now it has been over a year and I am a little frustrated. I am frustrated that he simply does not want to do anything himself. He can drink out of his cup himself but he won't. Even if the straw is in his mouth, he will not drink unless we get involved. He will scream and yell help or please until we give in. Most of the time we don't but honestly, when he is begging "please" and "help"... sometimes it is hard.
Usually, if he doesn't stop the behavior, we just send him to his room for a timeout but truthfully, it is not working. He will stop crying and then when we bring him back to the table, it starts all over again. This has been going on for months and months and months... a long time! He gets so dehydrated during the day so it is hard when we see him refusing to drink when we KNOW he can. He will on occasion but it is few and far between.

As far as eating independently, we are not even close. Not one bit. He has refused any sort of adaptive device his OT or we have made him. He will not even try to feed himself with or without an adaptive device. I would think at some point he would want that independence. Am I wrong to think that he would want this, especially after a year of being home?

*Sasha still refuses to chew. He knows how to chew. He loves his chew stick he got from his OT and displays, through this activity, that he knows how to chew. But when it comes time to eating, he just won't. He will mush stuff around in his mouth and then if it gets stuck on the roof of his mouth, which it often does, he will then ask for some milk to help wash it down. But he will not chew it. This is still limiting his food choices greatly. If he thinks he won't like it or that he will have to chew too much he does one of two things. He spits it out right away or he locks his mouth shut so we can't even get him to try it. There is only so much yogurt, oatmeal, cottage cheese, pasta (you get the point) a boy can have... he has got to graduate to other stuff at some point.

*Sasha will not take any food by hand. Everything, absolutely everything, has to be given to him on a spoon. If we try to feed him things by hand, he locks his mouth shut and refuses to open it. We have tried everything from the baby things that just melt in your mouth, to cookies, to ice cream, to sandwiches... seriously, we have tried it all and to no avail. How do you get a child to try things when they just lock their mouth shut or spit out the food (if we are extremely lucky to actually get it in his mouth)? I know some people might say just don't give in and do this day after day but I have two problems with this thinking when it comes to Sasha... he has too many, way too many, emotional issues with food to do this (we don't want to see him regress) and secondly, honestly I think he is so stubborn that he would literally let himself starve rather than eat something from our hand. Seriously!

*He still gets very emotional about food but I will say this is actually getting better, thankfully. There are not as many tears now. He knows he can trust us and has really made leaps and bounds in this area. But does this ever fully go away? Or do some kids always have these emotional issues with food that they just can't get rid of because they were so psychologically damaged at such a young age in regards to food? We, well actually I, think that if we are too strict with him regarding all these issues that he will actually regress in this area. Am I right to fear this?

If you have stayed with me through this long, personal post I really, truly appreciate it. Any advice and/or encouragement would mean so much to me. Thank you.

11 comments:

  1. I can totally relate to the mushing the food around and NOT chewing. That's Jovan! He's been home a year and eight months! He will not completely chew his food from beginning to end of the meal. We are taking him to an OT to see if anything can help...I hope others can offer help, just know you are not alone!!!

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  2. I don't have a lot of advice because we are going through VERY similar issues with Olive. For a long time she just would not put anything in her mouth that wasn't from a bottle, finally she graduated to a sippy cup after being home about 6-8 months. Then it was the spoon... and that took about 3 months of therapy before she did it. And I honestly don't think the feeding therapy had anything to do with it. I think it was because she finally decided to try it, of her own idea. And now we're stuck on the chewing thing. Apparently she will chew at school but will NOT chew at home. And apparently she is eating again at school, but will NOT eat at home with out us forcing her to take bites.
    Olive has regressed A TON with force feeding, but we didn't have a choice, because of the amount of weight she lost and how long she let herself go with out eating after her surgery.
    She is SO stubborn that she would let her self starve or get dehydrated to the point of hospitalization if we didn't force her to eat/drink when she needs to.
    And like you, we have tried EVERYTHING. We are having more issues than just food with Olive. and nothing, NOTHING, works. It's all what she does or doesn't want to do for what ever reason makes sense to her. So, we're seeking a behavioral therapist to help us with her.

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  3. Oh, Devon, I wish I has something useful to say. We haven't had that issue with our boy (actually the opposite...he eats things he shouldn't) I will pray that things get better and Sasha will strive for a little independence.

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  4. you need to find a feeding clinic. yes, there really is such a thing. ALL the problems you are having are common in premies. google feeding clinics and your state. it does get better!

    p.s. this is the website http://www.childrenshospital.vanderbilt.org/interiorfeeding clinic and your state. Hang on the problems do usually .php?mid=765 for the one at vanderbilt they may be able to refer you to one close to you

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  5. Devon...I am so sorry you are having such a hard time. I honestly don't know how to deal with this, but just want to lend support and send lots of love and good thoughts for improvement in this area!

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  6. Sending love and prayers to your family and to Sasha. Hang in there!

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  7. Sasha's fears around food sound so engrained from his past. What did they do to that poor little guy... Unfortunately because he was so youmg a year isnt much time to get over emotional distress. Its all he ever knew, so it will take a lot of time and patience on your part. Even though im sure its exhausting it will be worth it in the long run. You are so lucky to have that little blessing to watch over and care for! Stay persistent : )
    Sarah R

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  8. I agree, you need a feeding clinic. Kennedy Krieger Institute (said to be the best in the country). There is one here in the twin cities. I have no idea if they're good or bad. Going to a feeding clinic is pretty intense, both for the child and the mom. Hopefully there is one near you!

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  9. Praying for Sasha that God will give him a desire for independence and heal the insecurities or whatever is causing him to resist independence.
    I'm also praying that God will give you wisdom to know how best to help him and where to get help.

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  10. Devon, I've seen OT mentioned here but not ST. Have you had him evaluated by speech therapy? That's my only suggestion since I'm technically not an adoptive parent yet, but I'll pray for you too.

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  11. I wonder if he was force fed as a baby and then choked. This may be a very ingrained self preservation technique that is ingrained. It is very difficult. My bio son had oral aversion (not as severe) common with preemies especially those that were intubated. We to used a feeding clinic. One thing that made a difference is this item
    http://www.onestepahead.com/catalog/product.jsp?productId=537276
    we let him play with it for a week or so then slowly added jsut a tiny bit of food. I bet it could be adapted with a velcro strap so Sasha could use his little arm.

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