Path: utzoo!utgpu!news-server.csri.toronto.edu!bonnie.concordia.ca!nstn.ns.ca!news.cs.indiana.edu!know!zaphod.mps.ohio-state.edu!think.com!yale!bunker!hcap!hnews!Gary.Rapert From: Gary.Rapert@hnews.fidonet.org (Gary Rapert) Newsgroups: misc.handicap Subject: Re: NEW TO ECHO Message-ID: <17101@bunker.UUCP> Date: 22 Jan 91 21:50:22 GMT Sender: wtm@bunker.UUCP Reply-To: Gary.Rapert@hnews.fidonet.org Distribution: misc Organization: The Handicap News, Shelton CT (203) 337-1607 Lines: 66 Approved: wtm@bunker.UUCP 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. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Gary.Rapert Internet: Gary.Rapert@hnews.fidonet.org