Guest guest Posted April 9, 2006 Report Share Posted April 9, 2006 My advice is to talk to anyone and everyone who will ask or listen about your son! My son Mason was diagnosed at 8 months old and all we were told by doctors is to do traditional therapy. Talking with other parents in my community and those in the therapy waiting rooms I learned of Conductive Education, hyperbaric oxygen treatments, intensive suit therapy, hippotherapy, therapuetic riding, NTD courses, massages and hopefully much more info from meetings of future mom's and dad's to come! Mason did traditional therapy for 9 months with slow progress and since beginning other more intense therapies he began to crawl and now walks with some assisstance. We still do traditional therapies in between the more intense ones but Mason makes the most progress after his intense therapies. , mom to 7, and Mason 4 1/2 BPPMG. > > Does anyone have any advice about telling family and > associates,coworkers,strangers on the street about my son's condition > he is 9 and a half months old the only thing obvious is he is visually > impaired and he doesn't sit up I'm not sure of what to say so most of > the time I say nothing and people don't ask but I'm sure they notice > his disabilties. My immediate family pretty much already know and I had > a hard time telling them. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 I like and 's advice - keep it simple for the general public (including family) but be specific with people in waiting rooms. It never occurred to me but it seems like a great way to get information! I'm really really private and don't like discussions with chatty strangers in the store, so I don't feel obligated to give the big explanation to anyone in those cases. Sophia's 2 and sits up but doesn't crawl or walk. When a random person in line somewhere asks how old she is and says " I bet she's into everything " , I usually just laugh and don't say anything. When she was younger people would ask if she was walking yet and when I said no, they'd say " all kids do things at their own pace. " I feel like I had that conversation 50 times, and hated it the whole time. Hopefully after two years, I'm lightening up a bit - but I don't think I'm getting smarter. As I was typing this I realized Sophia and I just went through a 9 week art/music class with kids her age when it was obvious she wasn't at the regular skill level. I felt really alone and if I had explained to one person one time Sophia's history, I bet I would have felt better and enjoyed the class more. And I bet the other mothers, who noticed a problem but were too polite to ask, would have opened up to me too. So maybe the lesson here is, do as I say Dorothy, and not as I do! Open up to people you see regularly and talk to, but don't waste your time on the grocery store clerk. As far as the technical aspects of explaining PMG, I usually say that parts of her brain grew improperly, and those parts cause seizures. And before their faces fall and they give you the Look, I tell them how great she is and why. It relieves the burden of the person listening for having to say something comforting when they probably can't relate, and gives them (and you) something to smile about. it polymicrogyria , " Dorothy " wrote: > > Does anyone have any advice about telling family and > associates,coworkers,strangers on the street about my son's condition > he is 9 and a half months old the only thing obvious is he is visually > impaired and he doesn't sit up I'm not sure of what to say so most of > the time I say nothing and people don't ask but I'm sure they notice > his disabilties. My immediate family pretty much already know and I had > a hard time telling them. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Oh my gosh... the worst is when people say.. " OH I'm so sorry..it must be sooo hard..but God only gives these kids to those who can handle it. " I've heard that one a zillion times. I actually think it gets easier..this is to all you Mom's with little ones under 2 or 3.. it gets easier when the child goes into a wheel chair instead of the stroller.....its like...they suddenly have the presence of being special needs....people still stare...but they dont wonder if something is wrong with your child... because obviously.. there is. What I do love... however, is when little children come up to me and say " hey lady..whats wrong with your kid..or WHAT HAPPENED TO HIM with big eyes... " to me,it is the sign of a strong character for a child who isnt afraid to question outside of the norm. The worst...are the mothers who simply stare from a distances and discourage their children from staring..who turn and walk the other way...who can't be bothered by what (thankfully to them) them dont have to face. Being a Mom of a normal active 10 year old..and a crazy 5 year old...in a relatively upscale community...I get that ALOT. There are compassionate people too...wonderful caring warm people... but there are those " fast trackers " on the road to travel soccer, prep school or PTA meetings who get more annoyed in their SUV's when my big big big van is blocking them. I see some little children actually uncomfortable, afraid, or making fun of the special needs kids.... and that is sad. The people who are willing to take the time to ask what is wrong...I guess... are usually people with a compassionate heart. Do you ever feel like you are in a different time warp when you are sitting with your wheel chair at a function where you are the only mother with a wheel chair....doing a G-tube feeding...changing the diaper of an 8 year old who just did a GOD AWFUL disgusing bowel movement that turns noses??? Or they start screaming in pain...and because they cant talk...you have to run out in the middle of your daughters Orchestra recital? Or they start having a huge seizure 5 minutes before your God-sons Holy First Communion... What is wrong with your child lady? There is nothing " wrong " with my child. My child is right in God's eyes...and God's creation. He is who he is.... a challenge to the " NORMAL " world.... but a gift to me... he is my child. And he is the most beautiful child I have ever seen. Nope... no baseball practice, no soccer, no lacrosse, no football, no basketball, not even baseball. No chess club, drama club, band, or art school. Nope. Just a boy in a chair, a boy without words... a boy with magical warm hazel brown eyes that stare in silent adoration of the way a tree blows in the breeze. No college future, or car to buy...no worries about drugs, sex, and teenage issues.... no girlfriend trauma, or heart to heart talks. Just a boy in a chair...with a gentle smile......and the love of a walk down a country road... How long will he love the teletubbies and Barney? And no...we can not plan for " retirement " the same way my friends... there is no future other than day by day with . Because at any given moment...things continue to change. And he will be with us forever...as he and God define forever. So...yes...another time warp...another reality from theirs... but it is mine. And I would not trade the lessons of love and life for any sports club, SUV or Florida retirement community on this planet. What's wrong with your child? Nothing. He is perfect? What's wrong with you. Sorry...long day.... sometimes it just pours out. God Bless. lauranotdigangi wrote: I like and 's advice - keep it simple for the general public (including family) but be specific with people in waiting rooms. It never occurred to me but it seems like a great way to get information! I'm really really private and don't like discussions with chatty strangers in the store, so I don't feel obligated to give the big explanation to anyone in those cases. Sophia's 2 and sits up but doesn't crawl or walk. When a random person in line somewhere asks how old she is and says " I bet she's into everything " , I usually just laugh and don't say anything. When she was younger people would ask if she was walking yet and when I said no, they'd say " all kids do things at their own pace. " I feel like I had that conversation 50 times, and hated it the whole time. Hopefully after two years, I'm lightening up a bit - but I don't think I'm getting smarter. As I was typing this I realized Sophia and I just went through a 9 week art/music class with kids her age when it was obvious she wasn't at the regular skill level. I felt really alone and if I had explained to one person one time Sophia's history, I bet I would have felt better and enjoyed the class more. And I bet the other mothers, who noticed a problem but were too polite to ask, would have opened up to me too. So maybe the lesson here is, do as I say Dorothy, and not as I do! Open up to people you see regularly and talk to, but don't waste your time on the grocery store clerk. As far as the technical aspects of explaining PMG, I usually say that parts of her brain grew improperly, and those parts cause seizures. And before their faces fall and they give you the Look, I tell them how great she is and why. It relieves the burden of the person listening for having to say something comforting when they probably can't relate, and gives them (and you) something to smile about. it polymicrogyria , " Dorothy " wrote: > > Does anyone have any advice about telling family and > associates,coworkers,strangers on the street about my son's condition > he is 9 and a half months old the only thing obvious is he is visually > impaired and he doesn't sit up I'm not sure of what to say so most of > the time I say nothing and people don't ask but I'm sure they notice > his disabilties. My immediate family pretty much already know and I had > a hard time telling them. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 God bless you , you and your family and all our Angels on earth I felt so strange reading your post, I cried but I wasn't sad I can't explain it, as you told when you look those big eyes of your Angel you see the power of love coming outside, as days go by I see my little Angel a becomes sweet, affectionate more then before, each day. She is my little silent Angel. kisses from Italy Ennio & a Quote Link to comment Share on other sites More sharing options...
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