temper tantrums and trach/no voice

[maleeksmom]

Hi there

As I am writing this I am feeling completely frustrated and fed up!! My son recently turned two and has been going through A LOT of clinginess and separation anxiety over the past 2-3 months. It is pretty classic stuff---crying if he loses sight of me and wanting to be picked up etc. Over the last few weeks he is also having what I think are temper tantrums (lol-i know-very normal for a two year old)! I am 8 months pregnant so I know his behaviour is perfectly normal and probably connected to new baby on the way but because I am SO tired and grumpy myself am getting really overwhelmed.

The problem is it all looks a little different because he can't use his voice to communicate and, in his case, also doesn't hear well. So then I am not sure if what I am seeing is a temper tantrum! Am wondering how your LO has expressed him/herself at this stage of development and what temper tantrums have been like for a LO who can't vocalize? My son has been basically doing the following:

1) kicking, hitting and grabbing the suction pipe when I do suction
Anyone else had their little one develop a sudden strong aversion to suction and how did they communicate it? He also just runs or rolls away when I try to do suction. I feel horrible because it is getting harder and harder to even get the suction done without actually holding his arms or grabbing him! I feel sooo mean but can't avoid doing suction.

2) he lies on the floor a lot and refuses to move which kind of seems like a " silent" temper tantrum or maybe "baby" behaviour-or sometimes lies on the floor kicking and waiting to be picked up

Anyone else noticed anything like this? He is a big two year old so it is getting close to impossible to pick him up and even when I do he refuses to stand or kicks until I put him back on the floor.

3)pulling at cannulae or g-tube button, pulling off the filter cap etc. etc.

I know this is all probably not such a big deal but was just wondering if anyone else has had a similar experience and also if there are different ways to deal with toddler tantrums/separation anxiety for a LO who has a trach?? I could really use some good ideas! Pregnancy, humidity and a toddler who kicks me when I try to suction him are turning into a bad combination!!

[rosi's mom]

Rosi gets mad and throws tantrums and I feel like she's so spoiled, but when she cries I have to pick her up to suction her so she kind of gets her way anyway. At the very least she gets attention for her actions. Hers sometimes involves kicking or pounding, but most times involves throwing herself down on the floor and crying (silently except for the noise of the secretions as they build up). She has also learned to throw things, only a short distance, but enough to break some things.
Another little boy I know gets mad at his mom and then will pull his trach out if she doesn't give him what he wants. It doesn't get him his way, but it does get him attention.
Do you make sure to spend time holding him and playing with him when he isn't upset? Not to question your parenting, but with my middle child I've found that the time I spent with him wasn't enough for him. I thought I was spending sufficient time with him, but he needed more time of me holding him. That has helped some of the tantrums for him. I guess he's just a kid that needs a lot of touching and hugs and holding. We read books now with him on my lap instead of next to me.

[maleeksmom]

Originally Posted by rosi's mom

Do you make sure to spend time holding him and playing with him when he isn't upset? Not to question your parenting, but with my middle child I've found that the time I spent with him wasn't enough for him. I thought I was spending sufficient time with him, but he needed more time of me holding him. That has helped some of the tantrums for him. I guess he's just a kid that needs a lot of touching and hugs and holding. We read books now with him on my lap instead of next to me.

This is a good point-although to be honest-my son is basically stuck like glue to me all day! We play and read and I even carry him in a sling on my back (he's 35 pounds and I'm 8 months pregnant!) I started with the sling because he wanted me to pick him up and carry him around ALL day long and I just couldn't physically. He comes with me to the toilet, we co-sleep etc. I think he is just sensitive and, as you say, needs a lot of touching and hugs and holding. My gut says that all he has been through has made him a lot more aware and sensitive-and also that just might be his personality. Good to know that others have gone through the same thing!

[LKN]

I'd say normal two year old behavior. I don't know if your son is developmentally delayed in any way, but I think it is perfectly fine to start to introduce some boundaries. If there is no physical reason for him to need you to carry him, I'd stop. The same with the bathroom. They only learn what is expected of them if we show them--I'd think this is especially true if there is hearing loss--unless, of course, you are signing. He might have more tantrums with the changes, but in the end you will both be happier.

[kadiera]

Sounds pretty typical to me too.

I'd work on communication. Is he getting help with signing or other communication methods from early intervention? There's some research out there that more typical kids who use sign language have fewer "terrible twos" type behavior, and I'm sure that'd be true of our kiddos too - communication is a big part of that sort of thing.

I would say there's a difference between avoiding suctioning and actual tantrums - tantrums tend to appear to be over the top sort of behavior.

We've started seeing an infant mental health specialist (a psychologist with a specialization in infants and toddlers) to help deal with Alexander's anxiety issues, which includes separation anxiety (like, Monday he got so upset that he and a nurse that's not his favorite went back to the PT room without his "aunt" who was his transportation for the day that he puked all over him, the nurse, and the PT). If you really think what you're seeing is out of the norm for kids this age, it might be worth tracking down someone else to evaluate that.

[lynn]

Well, sounds like pretty typical 2 yo behavior to me--- Joseph gets mad and starts hitting himself in the face, or banging his forhead off of the floor(I usually hold my hand between the floor and his head or his head and hand-and wait for it to pass)

We also have problems with pulling on the trach (really yanking so it is most of the way out of his throat) I usually just try to move his hands away and try to ignore other than telling him he wont be able to breathe if it comes out..

One of the biggest factors in stopping some of these behaviors is just ignoring and redirecting focus: also having a way to communicate will help the frustration from building until they cant handle it anymore-- I have really noticed a difference in Joseph since we have really been focusing on signing and making him try to sign back when he wants/needs something

when I notice a tantrum building up I try to redirect, and I try to give advance notice of something that will be happening--- I give a 5min warning it will be time to stop playing and go get his bath(bed, dinner, ect), then again a 1min reminder, before saying ok its time to go now... I kinda do the same with suctioning- Joseph hates to have it done unless it is his "idea" early on I started signing by tapping my chest and telling him we were going to suction... now when he starts sounding junky, I ask and he will tap his chest and nod his head or he will tell me no... I let it go for a min or two and keep asking until the answer is yes (when he cant breathe easy, it does turn to yes) and then it is not such a fight, if I try to just start without his "permission" it is an all out battle, which is really counterproductive because the tantrum just causes more secreations

At this age some kids are just really high-maintainence, and will do anything to get the attention they crave (I have 4 kids and have experienced this with one of my daughters- who even now as a teen is not tantrum free)

[lil' G's mom]

I agree with everyone else, alot is just typical two yr behavior with a twist because they have other options to throw in: ie. Trach pulling, suctioning, ect.
G is a big hitter and biter to get my attention. We do time outs and that seems to work for us. Especially when he is really out of control. On the bathroom thing maybe try a babygate at door at first so he can see you but not get in. Then slowly faze out. You need to be able to get some privacy. And he needs to know that just because your out of site it ok. On the tantrums ignore them unless he's in danger of really hurting himself or others and be very short with your replies to him during this time: ie, when your calm we will talk, and then walk away. If you don't react he will eventually stop because it's not getting the required result. If he drops to the floor leave him and move away. This will take paitance and consistincy on your part.
Good luck I feel your pain!!!!

[arielle]

very typical two year old behavior!! mine just turned two and he uses his trach to his evil advantage, he will cough (wich is fake) to get my attention and if i ignore him he will just keep coughing until he throws up, he pullls his trach collar off, if im talking on the phone he will bite scratch and hit me to get my attention, he will hit his brother. he is has major seperation axiety issues from a very extended stay in the hospital, i try not to be too hard on him because he has been through alot, but then i know if i let him continue it will be a detriment to him. he has gotten better in some respects he used to bang his head and slap himself in the face to get attention. im at a loss just like you, he uses very minimal signing and he is non-verbal, he hears fine but the fact that he is smart enough to comminicate but doesnt have the ability to is frustrating to him. also he has a twin who is developmentally much younger than him he veiws him as the baby so thats another source of the unruly behavior. i plan on working with a behavioral therapist to see what is the best way to respond to his actions and also to give him the tools to express himself, because truly i think thats the hardest part, wanting to say something..and not being able to.