When do you discipline a child with special needs he has a trach and he is so frustrated he is hitting himself from frustration and I feel helpless

Teresa - posted on 04/07/2011 ( 9 moms have responded )

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My nephew is 20mnths and has a trach. His mother is so frustrated and needs support. The live in rural Kentucky and have little support. Any advice would help.

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Minnie - posted on 04/07/2011

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What sort of 'discipline' are you thinking of? I have a 2 1/2 year old with no special needs and our extent of discipline involves me reflecting her feelings, redirecting her, distraction and lots of nursing.

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Florencia - posted on 04/10/2011

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Teresa I am a new Trach G Tube mom and my baby has Trachiomalacia. I am planning on learning ASL to help allow my child to communicate and express himself. I would love to get to know mom's that have gone through and is going through the same thing i am or will be experiencing. Let me know if you want to become friends. My phone number is 440-258-6060. and my e mail is florenciawillis@yahoo.com I'm sorry tht you don't have anyone else to go through this with but maybe we can lean on each other. My child is still in the NICU going on 3wks with his trach and G tube now. He is doing awesome! he is so happy it is amazing and wonderful the difference it has made. We are hoping to bring him home in the next couple of months. Let me know hope to TTYL. Find me on FB if you would like to be friends. or you can txt or whatever too. (oops I read tht wrong let your nephews mom know tht and the same goes for you as well as a person from the outside looking in would have good advice too)

Teresa - posted on 04/08/2011

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Tht was great info Thank you soo much! I don't know why I didn't think of that"the library" of course. Yes, her Dr. want her to take him to another hospital for a better speech therapist but it's 3 hrs away and money is a big issue. That has alot to do with the services she needs and isn't getting. Most of the people I have been reading about on this site have nurses like 10-13 hrs a day and OT, PT, but because of where they are and being on medicaid her options are very limit. I personnally want her to move but she can't do that not now anyway. But thank you so much for answering my post It means the world.

Belinda - posted on 04/08/2011

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I forgot to add that I am an OT not a ST, but please let me know if I can help you in any way,

Belinda - posted on 04/08/2011

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Teresa, The speech therapist does not need to teach your family sign language. There is alot of information on baby sign language out there, but unfortunately alot of it is for sale, however, if your sister goes to a library they will either have books on baby sign (ours has books and CD for parents as well as some baby sign books in the board book section). If the library does not already have something they should be able to get them in.
OR she can make up signs of her own - unless he is going to have a trach for a LONG time and will need to communicate with sign as he grows older. In that case there are ASL (american sign language) websites out there that have videos of signs that can be adapted for children.

Becky has some good suggestions too. When teaching specific signs I would start on his needs first things like, food, milk, water, and then go from there to emotions, actions, please and thank you etc. It really sounds to me like he has no way of expressing himself.

The speech therapist should be able to talk to another speech therapist for information -again someone from her school,a professor or someone who works with children on a daily basis. There is alot of information out there, especially on the internet and at the library.
Good Luck!

Teresa - posted on 04/08/2011

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Thank you all so much. Yes, my nephew does have a speach therapist but she does not know sign language and is mostly afraid of Jayden. She is not comfortable at all. There is also a 3 yr old brother in the family and this complicates it all the more. But the online support group is a good idea and maybe even a phone call support system would be wonderful. The mother just feels so alone and this will truly help her. Just knowing other mothers are out there and are willing to discuss these things without judgement is a beautiful thing! Bless you all

Becky - posted on 04/07/2011

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My daughter (16 months) does not have special needs but I am a qualified childcare worker & I use specific techniques to teach her how to behave & give her the tools to communicate.

Whenever my daughter is rough, even if she is just playing, I tell her 'stop' & put a hand up to signal this. I take her hand and gently make her stroke whatever she is hitting/grabbing and tell her 'gentle'. Sometimes she pulls her hair when she is tired or to get attention & this technique deals with that really well.

I make sure I use a calm, steady voice & I am down at her level. I try to focus on teaching her the right thing to do rather than what she did wrong. I keep expanations short & simple.

I also use specific hand signals with certain words to help her focus on what I am saying & to understand better. She also learns to use these signals so she can communicate, too.

I think hand signals can really help your nephew. The ones I use are very simple & ones that I made up myself - nothing technical or fancy. The important thing is to use the same signal for a word every time & to be consistent.

I tap my eye & say slowly 'look at mummy' to get her attention before I talk to her or to stop her doing something she shouldn't be doing.

I put my hands out in front of me & move them back & forth & say 'finished' to ask if she has had enough to eat or to tell her that something has ended.

There are heaps more you could do like emotions, hungry, mine, etc that wld assist in dealing with his frustration. Keep it simple & fun.

Good luck to you & your family

Belinda - posted on 04/07/2011

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What I am getting from your 2 messages is that he can't communicate effectively because of the trach and this is causing frustration which seems to be causing behavioral issues. That is a very difficult situation. For starters does the child receive speech therapy? This might help the family and your nephew establish some kind of communication - even rural Kentucky should have home health or early intervention that could help this family. If there is some problem limiting them from getting these services then I would recommend looking for information on teaching children simple sign language or creating a communication board with pictures to help him express himself and get his needs across. There should be some information online or at their public library.

I don't know how long he will have a trach or if there are any other issues, but he should probably be receiving both Occupational and Physical therapy.

I don't know for sure, but there might also be support groups online. Another resource for her is to contact the hospital (where he received the trach) and find out about support that way, they might be able to speak to another mom somewhere else who would be willing to offer support via phone and or email.

Wow, my heart goes out to her, she and her son are in a tough spot, the age combined with the issues that occur due to a trach will be tough to cope with without support. Hope all goes well and that she is able to find some support.

Teresa - posted on 04/07/2011

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Maybe discipline was the wrong word. I agree with with all of your views on the subject. But the little one I am referring to is starting to hit and bite himself and others and because he can't speak mom feels horrible about it. She tries to say no and show him no but she just really needs someone who is going through similar stuff. They live in a very rural community and she doesn't have any support there's not even one other trach baby in her county.

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