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Having "the talk" with your child

macchiattomacchiatto member
in Special Needs
Did anyone see this? https://www.scarymommy.com/i-thought-we-had-more-time/ Thoughts?

On a personal note, I feel like we're getting closer to having "the talk" with DS. We had appointments last week with devel pedi and neuro and X commented for the first time that when we go to those doctors, it's always for him and not for his brother. He also just re-started PT (18 months after "graduating" from it). He's still been getting EI and OT so he's now had 2.5 years of therapists playing with him and never really asks about it. As his PT left after the initial eval, he said, "I think Ms. Liz is a physical therapist." I had no idea he knew that term (for one thing, we usually just say "PT"!). I said that's right and asked him what a physical therapist does and he said, "helps people," but I think he's likely on the verge of asking why these therapists make him do everything but Brother can kind of come and go as he pleases. (His current therapies are all in-home.) 

When he was around 3.5, he and his twin both did start making comments about the one twin running "better," and being able to do certain things that X couldn't. His PT said the best response at that age was just to say, "It takes practice," but at 5.5 I know I need to develop more of an explanation for that. Any suggestions for explaining gross motor delays (hypotonia and loose joints), anxiety and social delays (not-quite-ASD, for lack of a better description) to an affected 5y/o and his typically developing twin? Would you get into underlying causes at all at this point (e.g. low tone) or keep it to a simple "some of us need extra help learning how to do certain things" and also talk about the things he's good at?
fraternal twin boys born january 2009
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Re: Having "the talk" with your child

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    macchiattomacchiatto member
    edited June 2014
    Your response to the scarymommy post and advice for us both make a lot of sense and confirm my instincts. Thank you. I've kind of been playing it by ear so far where I respond to the questions but don't offer a lot more information beyond what he's asking. We have talked a little at times about how some kids need extra help learning how to do certain things and that's where PTs, OTs, EIs, etc., come in. I do want to explain more now but struggle with wording that's going to make sense to a 5-year-old especially since, like you said, there's not a clear Dx. I also want to feel out how much he's been picking up from listening in.

    ETA: I should add, I found out in my mid-20s that I had MS and while overall my disease course has been mild, it has always annoyed me when people try to sugar-coat it or respond with platitudes, so I think that is great advice for parents of children with special needs, as well. I think that's why the scarymommy post didn't sit right with me. The magical thinking and "everything's going to be just peachy" tends to ring hollow.
    fraternal twin boys born january 2009
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    realisticdreamsrealisticdreams member
    edited June 2014
    I didn't read that, but for us..Peyton started PT at 2 months old and has endured a multitude of doctors, tests, and diagnosis.  If she asks a specific question, I give her an answer.  I tell he about all of her surgeries prior to doing them, or any procedure that may be painful.  She understands a lot for her age.  She is super smart but emotionally sometimes she just gets plain pissed that it has to be this way.  Those are the hardest things for me to explain because I don't want to say the wrong thing when she's angry/upset about the situation.  

    It really is just her normal for the most part. Her sister has SOME medical issues so its not like she only goes to the doctor once a year either, so that may help a bit. But, basically, i'm always honest with her.  Our current issue is that she isn't telling me how much pain she's in unless it's unbearable, and her reasoning is, "she's been telling me for a year and I haven't be able to help her yet so what's the point."  Yep. Ouch.
    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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