Betty.J.@p10.f642.n105.z1.fidonet.org (Betty J.) (01/23/91)
Index Number: 13106
Greetings from Longview WA.
We have a 4 year old son (Adam) that is an Achondroplasic Dwarf. Adam's torso
is about average size, his arms & legs are only about half the length of what
an average size child's would be, his projected adult height is 4'4". He is
currently 32" tall, which is the average height for a 17 month old boy. He
has normal intellegence & social skills. His gross & fine motor skills are in
the lower limits for a 4 year old, due to limited extremity length. He gets
lots of stares in the store, people can't quite put their finger on what is
different about him. Or they think he is less than 2 years old and can't
believe how well he talks.
Durring his first year he had some medical problems that required frequent
doctor visits and a short hospitalization. The last couple of years he has
been very healthy and has had only "normal" childhood illnesses.
We are interested in any hints to ease the transition from pre-school to
public school; ways to handle social situations; networking with others that
are short statured & other parents of children with special needs; suggestions
for older siblings to deal with stares & questions; etc.
We are members of Little People of America (LPA), however; there is not a
local chapter. We try to go to the Puget Sound Chapter meetings when they are
on the south end of the Seattle area. We also try to attend the regional
weekend meetings that are held twice a year.
My husband says that I'm a worrier. But, I like to know what might be comming
and have some idea of how to handle it (I'm not very good at thinking on my
feet).
ROB & BETTY JACOBSEN
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!642.10!Betty.J.
Internet: Betty.J.@p10.f642.n105.z1.fidonet.orgGary.Rapert@hnews.fidonet.org (Gary Rapert) (01/23/91)
Index Number: 13112
Hi, Betty (and Rob)! It was exciting to read about your son, Adam. Our
son, Ryan, is also achondroplastic. He was 5 in December. It was like
reading a pyschological profile of myself when I saw your message.
Many of your concerns are exactly what ours are, or we have experienced
them already. Many are medical. We don't have all the answers, but I
can tell you how we have dealt with them. It is interesting that Adam's
fine motor skills were delayed. Ryan's were significantly accelerated
because with slow gross motor skills, he had more time to develop him
fine motor skills by default. By the time Ryan was 2 years and 3 months,
he still wasn't talking. It turned out that he had had several middle
ear infections which his doctors were unable to diagnose, due to their
unfamiliarality with the anatomy of the ear canal of an achondroplastic
child. We went through speech therapy, and when he seemed fine in all
other areas, they suggested that his hearing be tested by a specialist.
Well, we were not happy to find that he had significant amounts of fluid
in his ears which had been present for quite sometime. The specialist
explained it as what you might hear when you are underwater. After tube
therapy, his speech took off like wildfire. He now reads at a third
grade level, spells just as well, his speech is flawless, and he
constantly reminds us that we must be careful of what we say for fear
that things may come back to haunt us at the most inopportune times out
of the mouth of this "babe?".
Ryan has also had inguinal hernia surgery twice, once when he was 3
months old and again when he was 4 years old. He was on a diuretic for
2 years to reduce intracranial pressure. At one time, there was a
question as to whether he would have to have a shunt implanted to deal
with the pressure, but the diuretic did the trick. We still take him to
a neurologist annually to have the circumference of his head checked, as
well as a precaution against other neurological problems which are common
to achondroplastic kids. We also see a clinical geneticist annually who
watches for things like organ crowding, cardiac distress, and any organ
problems related to achondroplasia. He, like Adam, has had his share of
childhood diseases, although he has bee exposed 3 times to chickenpox
without contracting them!
I think the social concerns are a constant challenge. The stares hurt us
as parents far more than they hurt these kids, at first. If the child
precieves that you as parent are uncomfortable with the stares others are
directing at your child, then pretty soon the child begins to ask "What's
wrong with me?" Of course, the answer is, "NOTHING" To me, the
important thing is to treat a child with achondroplasia just like any
other "average" child. Ryan is our only child, but I think I can say
that we have the same expectations of Ryan as we would of any other
child. This includes picking up after himself, being polite to others,
treating others like he wishes to be treated, and doing as many things
for himself as possible. We try to assimilate him into all our
activities. We take him out with us as often as possible, and we get
much the same reaction as you get when people hear start to read the menu
and order off of it himself. A great approach we use in restaurants is,
when the waitress asks me or my wife what "he" will have, we say "Ryan,
tell the lady what you would like." And he does it, work for word from
the menu.
When the stares turns into teasing and taunts, especially from peers,
there is another problem. We haven't had this problem, yet, but I'm sure
it will come. We have encouraged things such as birthday parties with
children from his preschool and Sunday School classes, and we insist on
placing him in groups that are age-approporiate, not size-appropriate.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Gary.Rapert
Internet: Gary.Rapert@hnews.fidonet.orgGary.Rapert@hnews.fidonet.org (Gary Rapert) (01/23/91)
Index Number: 13113
We try to instill in Ryan a positive self-image and help him build his
self-esteem as much as possible, because eventually, he will have to deal
with taunts and teasing and stares. If he feels good about himself, then
he may realize that what, ignorant, intollerant people feel about him
doesn't much matter. As far as the stares now, we ignore them. Ryan
usually says something to break the ice, or people will see us treating
him in an age-approriate way and realize that he is just shorter that
"average" children his age. If people persist and ask "What's wrong with
him?", we say "nothing." We them them that he has achondroplasia, and if
they are intellegent enough to know what that means, then the
conversation drifts away from curiosity to compliments. If persons don't
know what achondroplasia is, they usually say nothing else. They are
just curious, and I figure that by telling them what he has, their
curiosity is satisfied.
Well, this certainly has been a cathartic experience! We were beginning
to feel much as you do. We live in Columbus, OH, are members of LPA, do
not have a local chapter, and have had little success in networking with
other parents of short-statured children. We've got lots of information
on the Dwarf Athletic Association of America, books that will give many
hints about coping with achondroplasia as parents, and other
organizations I've run across in my lone search for a support group. I
look forward to a reply from you after you absorb all of this. If you
would like to talk more, please write to us at this address:
Gary, Deb & Ryan Rapert
5107 Justin Road
Columbus, OH 43227
You can also call us if you like at (614)864-7475. (Just remember we are
3 hours ahead of you here in Ohio!) I'll tell you about the specially
adapted tricycle that was built for Ryan, and about his "zapper" that he
uses to turn wall light switches on and off. Good luck as you all learn
together!
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Gary.Rapert
Internet: Gary.Rapert@hnews.fidonet.orgdeforest@hpihoah.cup.hp.com (Martha de Forest) (01/31/91)
Index Number: 13270 In # 13112, Gary.Rapert@hnews.fidonet.org (Gary Rapert) writes: > [...] > > When the stares turns into teasing and taunts, especially from peers, > there is another problem. We haven't had this problem, yet, but I'm sure > it will come. We have encouraged things such as birthday parties with > children from his preschool and Sunday School classes, and we insist on > placing him in groups that are age-approporiate, not size-appropriate. > > [...] My daughter is 10 and has Spina Bifida. She, too, is short for her age and a ten years, she is becoming quite a young lady. She walks with crutches and braces, so she attracts attention from strangers, but seems unaffected by the stares. She is very outgoing and has no trouble approaching strangers and introducing herself, especially when there are babies or animals involved! When Lea was 4-5, she attended a pre-school that had a bully in training. At that time she walked with a walker. The bully would stand in front of her to block her way. She would just look right through him and keep walking. She basically removed the guy from her universe, and the result was less than satisfying to the attention-starved bully. After the event, the boy made every attempt to get Lea's friendship (if you can't beat'm, join'm) and Lea was as pleasant as ever. Your worries about teasing and taunts were my worries too, but they have never been an issue for Lea. Lea's personality is very mothering and she has many friends who love to be mothered. Her friends stand up for her and she ignores the 1:30 duds. Now, I have a questioin for you guys. How do you get a child to be self- motivated when it comes to medical needs like medicine, drinking water, and other issues that make the child different from other children? This is my BIG issue at the moment. Martha de Forest deforest@hpihoah.cup.hp.com