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How much do you say in front of your child?

Florak8Florak8
in Special Needs

We are coming to a point where I know DS understands some of what we say. My question is, how much do you say about your child's delays/challenges in front of him/her?

I tend to only bring them up if there is a situation where a person needs to know. For example we went to the barber and I explained that DS is a little too wobbly to sit in the chair alone, and then I mentioned that he has some developmental delays. I am thinking I did not need to include the part about his delays. I think that was more me thinking that the barber would be wondering why. 

I really want to make sure that my attitude and language choices reflect that I do not think DS is limited, less than, or different in a bad way, so that he does not internalize those ideas. I do not want him to think I am making excuses or "covering for" his challenges, either.

This is just something I have been thinking about, and I would love to hear some of your perspectives! :) 

 

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Re: How much do you say in front of your child?

  • kar5162kar5162 member

    I think it's a hard area. DS appears cognitively on track and is verbal. He is present in all of his doctor's appointments and they need to see him, but we're definitely getting to a point where I have questions and want to have some discussions I don't want him to hear. I think DH and I are going to the next one together so one of us can take him out of the room.

    In terms of daily life, I focus on what he can do and just speak about other things as needed as "he's working on". I'd probably not say anything unless he's so wobbly you want the barber to be extra careful or he asked. Then I'd probably say something like DS's working on sitting so he'll sit in my lap today.

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  • realisticdreamsrealisticdreams member

    I know this is different because Peyton's medical problems aren't behavioral related (atleast the main ones), but I try to talk to her about it

    She is speaking well now, and she freaks everytime we go to the dr.  So now, I just tell her if it's going to be a good appt vs a bad appt.

    For example, her urodynamics test/kidney ultrasound/uro appt last week was awful

    But the 3 days before 1-2x a day I talked to her about it.

    "Peyton, in a couple of days we're going to go see the dr who helps you pee. They are going to put a giant pen on your back with goop to look inside.  This won't hurt. Then we have to do the pee test again, they are going to have to see your cootie and  this will probably hurt.  You have to do it baby, because we need to make cootie better.  Then we will talk to the dr afterwards and that won't hurt either"

    So she kinda understood, she grabbed herself and was got all excited and told me to "make her cootie better"

    Sigh.

    We don't have a choice but to really explain everything though, because eventually she will have to do all of this stuff by herself.  I don't really know how to tell her the extent of her medical issues though, I guess we will just go with it.

    For me, I feel like it's important to be open and honest with her, but I can see how you can be worried about everything he's hearing. 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • kar5162kar5162 member

    image-auntie-:
    Maybe my situation is different because I know my son is keenly aware of his differences- the ones that make him an amazing human being and the ones that do handicap him to a significant degree in many situations. He is limited in many ways and some of his differences are a real burden for him. That's a reality he lives with. To pretend otherwise would be dismissive of the efforts he makes everyday to be his best self.  

    I think age plays into it significantly. I expect (of course we're not there yet), I will have no trouble speaking with DS about his diagnosis and where he's likely to have challenges when he's older. He's already seems aware he's not quite like his peers at not yet 2.5. But with his diagnosis and a description of his current challenges comes a perception from others that I don't necessarily want him to pick up on. I want him to hear he has unlimited potential and not hear worries that he might not be able to do things. At this point no doctor can tell what he will or will not be able to do - it's about him and how his body adapts and changes. Will things be harder? Sure. Will he be able to do them? Probably. Will it be even harder for him to learn to do them (at this age) if he thinks it will be hard and he might not? Probably.

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