My son is 6 and has DS. He has a problem with food. He hates almost everything we try to introduce to him. What he eats is Breakfast only Eggos nothing else anytime we try to give him any other choices he runs, screams and gets very angry and sometimes he will not eat eggos either so we give him liquids. Lunch he will only eat potato chips or french fries (mcdonalds). Dinner same as lunch. Snacks he loves like jello, puding, popsicles, cheezits, goldfish and cookies. I have tried giving him every kind of food imaginable and he doesn't want it. The doctor tells us to starve him then he will have to eat. So we tried for a week and nothing he just don't care not to eat all he wants is the stuff listed or nothing. He likes milk, juice, water and neskwik.
He cannot talk and the therapist at school say that he will never talk. He gets OT and Speech. Not potty trained and doesnt have any interest in getting trained. He used to go to easter seals and they had no answers.
I would like to know if there is anyone I can talk to or if someone you can recommend someone to see him. His doctor only has one other patient with DS should we look for another? Or should we accept the fact that this is the way ts going to be for his life. Not sure what to do. Hes great kid and has no real anger issues he love to hug, kiss and laugh. We worry about the eating. Also he loves to be naked and loves loves the water.
I hear your plight. Where are you located? Primarily, I think you need to change doctors. You do need to involve a doctor much more familiar with children with Down syndrome. It sounds like you have your Early Interventions in place, as you mention OT and Speech Therapy. But, as far as the eating is concerned, they should be giving you some additional tips or suggestions. I have researched the ability to speak, and there are resources that suggest that if a child has not been introduced to language at an early age and continues without language until after the age of eight, they will likely not use language In your circumstance, it sounds that your son has been around language, from birth so it doesn't seem to fall in this category.
In terms of eating, as the doctor mentioned, you must eliminate the original foods for him to be persuaded to eat others. He is very smart, because he knows that you will break down and give in and provide him with the foods that he likes. If you want to change the behaviour, you must follow through to the end, even if the consequence is less then desirable. I know no one wants to starve their child, but in order for him to make the connection to other foods, he must realize that he wont get the ones he wants - which is why your doctor suggested this method. The end result is one of two things. Either he will reluctantly give in due to hunger and eat something that is placed in front of him, or you will have to instill that if he doesn't eat he will end up in the ER with an I.V. line for food. In order for this to work, you must make sure that the doctor's are on board with this as well as the local hospital. I would consult with the doctor in the ER, and ask them if you can show your son what happens to people who don't eat, and how they must receive IV for nutrients. The visual aid will help to promote comprehension. Without that, it matters little what you say, if he doesn't link the fact that no food equals starving and IV's. Also you want to make sure that the medical staff knows about the situation so that they do not think you are purposely starving your child. If they are on board, they will be glad to help you. At the end of the day, the IV trip would be an unpleasant result, but it definitely would signal how the first choice would be a better one. What I am suggesting sounds harsh, but the reality is, feeding him Eggo's and McDonalds French fries is not an adequate source of nutrition as you obviously know, and are obviously trying to change. But for this change to happen, you MUST be consistent. You mustn't give in. You have to be firm, and work through the tantrum. You can't give in to his screams and fits, because doing so will reinforce his unwanted behaviour. When he successfully does what you are wanting ie. eating new foods, you can reward him with things that he loves, such as hugs, kisses, and water. Do not reward with the negative foods. This will confuse him. The simple fact is, we all love to eat things that taste good, which usually aren't good for us or our health. Children don't understand why they can't simply continue to eat things that are not good for them, your son is no exception. I do think though, using this choice method of starve to eat right should be an absolute last resort method to change his behaviour. Try using other methods to get the behaviours to change first. (See below, my suggestion for using a reward system)
In terms of communication, does your son sign or use cards to communicate? How do you communicate with him if he doesn't use language? You might have to get back to basics for your son in terms of communicating. Have you heard anything about Baby can Read? Trying these types of programs might be very helpful with starting the communication lines from the beginning.
I absolutely do not believe that "things are just going to be this way" and you should NEVER accept the negative. When we do that, we are already defeated. I think and truly believe that if you want change, you have to work at it. And there are so many success stories out there. It is a definite bonus that your son doesn't have any anger issues to work through, these are the toughest. Keep reminding him with love how much you want him to do the things you are asking of him. Make it clear that screaming and tantrums are not acceptable, just as you would any other child. Below this I have put a copy of my Rewards Chart System. I would try this sort of system to get him to potty train as well as manipulate his eating.
Here is the post I put out often on this forum about the Reward system:
It seems that many mom's are having the same issues you are. It's a tough one, because often there are roots to these behaviours that have nothing to do with Down syndrome, and other times, may be inflamed because of it.
It sounds like your child needs to exert this additional energy in a different and constructive way. I often ask mom's who have issues with behaviour to look at a post I put together regarding behaviour, where choosing an outlet such as high level activities might help. Your son is the perfect age to begin in the type of activity that I mention in my post of some time ago (Aggression & Behaviour Issues in children with Ds.)
You can read it here: http://www.medhelp.org/posts/Down-Syndrome/A-Suggestion-for-BEHAVIOUR--AGGRESSION-issues/show/1226208 Take a look at the post and see if this is an idea that you might be able to pursue. I have many mom's from my parent group that talk about everything from newborns to adult children with Down syndrome. I often ask my friend who is a PT Therapist for Down syndrome and also an Aunt of a nephew who has Ds, and I have put together something new for my parent group. It is a modified reward chart, that can help instill good, and acceptable behaviours while also curbing the negative ones that we would all like our children to have.
Here is a copy of my information regarding the Reward System:
Behaviours are always certainly hard issues to deal with. A lot of times I have found that kids will continue to do things that they get reactions from, even if the reaction is negative. Simply because it still is attention that they are receiving. Have you tried a reward system? Use stickers on a chart as incentives for good behaviour, and removal of the stickers if he spits or other unwanted behaviours. When he gets 10 stickers in the categories that you put up (like chores or making up bed, putting toys away etc.), then he can get a reward of some sort, whether it is an ice cream, or a day out of his choice etc. But, use this system concurrently for the punishment side as well, so that if he is hitting, spitting or misbehaving, the stickers get removed, and there are also sub consequences like the time outs in addition to the removal of the stickers. I have heard there are great results using this system. I modified it somewhat from a show we have on TV here called "The MOM Show". They use it to encourage good behaviour but I found that removing the stickers is also a great way to minimize unwanted behaviours and it works for my 6 year old step daughter and 9 year old step son. I got the idea when we needed to implement some sort of system for the eldest step daughter who is 11 but has severe learning delays and is also diagnosed with ADHD. I hope that if I need it again for my son (who has Ds) it will work well for him also. He is only 11 months old though, so I am not in need of it yet!
Give it a try and see if you get any results. Short of saying to you, talk to your child
Continued from comment above (sorry it was a long response)
and let them know that the behaviour is unwanted and is making you very upset - but I am sure you have probably tried the verbal route. I often suggest martial arts for kids who have more extensive behaviour issues or aggression - but I tend to suggest that when they are around 6 years and older. I have trained children as young as 4 years old, but that is a longer term solution for discipline, health and mental awareness. (If that interests you, see my post in this forum that is titled "Aggression and Behaviour Issues".)
I hope that these are a start. I have other suggestions, but you may want to message me as some of them may be lengthy. My resources are from my 13+ years of policing, being a coordinator of a play group at the YMCA Early Years Centre's, 2nd Degree Black Belt and a university psychology background. Hopefully we can figure something out to help you!
I hope sincerely that one of these two suggestions help, but if they don't I can always find out other information for you.
In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator
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