========================================================================= Date: Sun, 29 Mar 1998 00:08:31 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: DnJJenner <DnJJenner@AOL.COM> Subject: Balloon Release Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello everyone....

We had a very nice day here also to release our balloons, even though there was a party planned, they kids all participated, we opened the windows and played the song I sent to you, we all held hands and watched the 2 pink and purple balloons fly high, "all the way to heaven" attached was a picture of Ceci and a note I wrote all with address of our site, wouldn't that be wonderful for someone to get it and come here.. =)

Love to all, the Jennerjohn 5 ========================================================================= Date: Sun, 29 Mar 1998 00:32:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Caden Lee Johnston Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Robyn,

Congratulations on the birth of Caden Lee. What a beautiful name!!!! Try to rest and let as many people help that want to. And another thing, if people want to come over to see the baby, say "sure, could you pick me up something or I would love it if you would do a load of laundry, dishes or something else around the house". I'm not saying take advantage, but you need to rest and that is most helpful. Kind of a little payment for admiring. Get some rest if you can.

Lynn (Holliston, MA) ========================================================================= Date: Sun, 29 Mar 1998 12:57:24 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Welcome Caden Lee: Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Congratulations Robyn and welcome Caden Lee. God Bless, Scott ========================================================================= Date: Sun, 29 Mar 1998 17:24:51 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Balloons - Welcome Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Well, I was at a seminar all day on Saturday, but I skipped out early so I could get to a store to pick up a balloon for Ceci. I made the clerk in the store rush as it was ten minutes to four. When I explained why I was so frantic, she was very happy to oblige my requests.

It was a beautiful day here in sunny New York. I am sorry I wasn't able to get the poem to attach to the balloon but it went up with a special prayer for Ceci.

Congratulations on the birth of Caden. Hope Mom and son are doing well and resting.

Thinking of the Kilner family and hoping that you are all coping as best you can.

And always saying a prayer for BJ's continued recovery.

Hope all is well with everyone,

Best wishes,

Janine Krebs ========================================================================= Date: Sun, 29 Mar 1998 13:27:54 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Re: Balloons MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

On Saturday, we had a birthday party for John Henry, Mar Mar's older brother who will turn 7 on Monday. The party was held at a Box Car Racing course, and everyone had a great time. If you have such a facility in your city, I would highly recommend it as a great place for a birthday party!!

We had helium balloons for decorations, and I shared Ceci's story with all in attendance. We all took balloons outside at the end of the party, and sent our thoughts out to Ceci and her family as they were released.

Aloha,

Joana Magno & Mar Mar ========================================================================= Date: Sun, 29 Mar 1998 20:57:21 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: 7 things a disabled kid wants you to know: MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

I came across this in a magazine I thought I'd share it with you all.

AS A DISABLED KID, I SENSE HOW YOU REACT TO ME. YOU MAY NOT SAY OR DO ANYTHING UNKIND, BUT I CAN TELL HOW YOU FEEL. ALTHOUGH I'M NOT ALWAYS ABLE TO EXPRESS MYSELF, I UNDERSTAND A GREAT DEAL MORE THAN I'M GIVEN CREDIT FOR. LITTLE, THOUGHTLESS THINGS HURT: WHISPERED REMARKS, SNICKERS WHEN THINGS GO WRONG, EVEN BODY LANGUAGE. HERE ARE SEVEN SECRETS THAT MAY HELP YOU TO BETTER UNDERSTAND HOW I FEEL.

1. ACCEPT ME FOR WHO I AM. Don't be afraid to get to know me. I may be a little slow physically or mentally, but I'm good company when you give me a chance. Take the time to enjoy me.

2. DON'T SMOTHER ME WITH HUGS. I like hugs, but sometimes I feel smothered. Ask me first if you may have a hug. If I say yes or start to hug you, try a quick one and see how it goes. If I push you away, don't be hurt. Just respect my need for space. Hugging me down on your knees at my level where my head can come up over your shoulder works well for me. I also might turn my back to you at times when you start to hug me. Backward hugs can be neat.

3. DON'T TALK BABY TALK. Yuk, I'm a kid not a baby or a puppy. At times I have difficulty talking; so it may sound like baby talk, but it's not. Hey, I'm really trying to say the words right. Sometimes I can't talk at all, but I may be able to sign with my hands. I might be cute and little but remember; talk with me like you would other kids my age.

4. LET ME DO MY BEST, EVEN WHEN IT ISN'T PERFECT. Quit telling me I can't do things because I'm disabled. Let me try. It may take longer and require a whole lot of patience on your part, but I might surprise you. Don't snatch things ot of my hands and say you'll do it. Ask me if I want to help. I'll be proud of my finished project, even if it isn't perfect. Please, don't go back and redo it.

5. DON'T FEEL SORRY FOR ME. I enjoy life and can make your life a little brighter, but only if you'll let me.

6. BE PATIENT WHEN I MESS UP. I sometimes say and do things that aren't appropriate. Calmly explain things to me. Help me learn good social skills. Be understanding when I mess up. Let me know when I've done well. Your praise goes a long way with me.

7. UNDERSTAND THAT I HAVE A FINE-TUNED RELATIONSHIP WITH GOD. I know He doesn't love me any more than others. I just feel that, because of all I go through, He keeps me close to His heart. God placed me here on this earth for a reason. He looks beyond all my imperfections and sees me as special. Best of all, He loves me just the way I am. Won't you?

By: Anita Corrine Donihue, she is a free-lance author, pastor's wife and educational teaching assistant who has taught special education children for the last 10 years.

Hope all is well with everyone. Our prayers and thoughts are with the Kilner and Harmon families.

Raquel Miller jara1@bellsouth.net ========================================================================= Date: Mon, 30 Mar 1998 09:42:21 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: Re: HELLO MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hal- I was recently added to the list serv as well. My daughter was born with Apert's on 1-9-98. Is Robin on the listserv? Could you give me her personal E-mail address. I would love to chat with someone who also has a newborn. Do you know which doctor's she is seeing? Also, my husband is from Atlanta and his parents are still there too. many thanks!!! Lisa McGahan

---------- > From: HAROLD E TYRE <HETSRT@PRODIGY.NET> > To: APERT@LISTSERV.AOL.COM > Subject: HELLO > Date: Saturday, March 28, 1998 3:34 PM > > Hello, we are Sherry and Hal Tyre in Martinez, Ga. We are Carmen Rae > Hill's (born > January 18 1998 with Apert Syndrome in Atlanta, Ga) grandparents. Our > daughter > Robin added us to the listserver yesterday. We will be releasing 5 > balloons today from our home along with Carmen Rae, Robin and Mike in > memory of Ceci. We look forward to sharing information, thoughts and > experiences with all of you. ========================================================================= Date: Mon, 30 Mar 1998 04:57:13 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: HELLO MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

---------- > From: Lisa McGahan <wmcgahan@IX.NETCOM.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: HELLO > Date: Monday, March 30, 1998 9:42 AM > > Hal- I was recently added to the list serv as well. My daughter was born > with Apert's on 1-9-98. Is Robin on the listserv? Could you give me her > personal E-mail address. I would love to chat with someone who also has a > newborn. Do you know which doctor's she is seeing? Also, my husband is from > Atlanta and his parents are still there too. many thanks!!! Lisa McGahan > > ---------- > > From: HAROLD E TYRE <HETSRT@PRODIGY.NET> > > To: APERT@LISTSERV.AOL.COM > > Subject: HELLO > > Date: Saturday, March 28, 1998 3:34 PM > > > > Hello, we are Sherry and Hal Tyre in Martinez, Ga. We are Carmen Rae > > Hill's (born > > January 18 1998 with Apert Syndrome in Atlanta, Ga) grandparents. Our > > daughter > > Robin added us to the listserver yesterday. We will be releasing 5 > > balloons today from our home along with Carmen Rae, Robin and Mike in > > memory of Ceci. We look forward to sharing information, thoughts and > > experiences with all of you.

Lisa,

Hi, my name is Mike and I am Robin's husband. Robin and our daughter Carmen are visiting Carmen's grandparent's (Hal & Sherry) this week. We are on the list server; however, we can also be e-mailed direct at CARMENRAE@PRODIGY.NET. You can correspond with Robin via the listserver or at HETSRT@PRODIGY.NET this week. She will be back home next Sunday. If we can be of any help to you just let us know. Mike Hill ========================================================================= Date: Mon, 30 Mar 1998 07:13:20 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Richard Tait <rjrtait@MARS.ARK.COM> Subject: big toe Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Ize family my daughter also has the big toe problem that you describe. Our doctors in B.C. Canada are waiting until the toe is big enough to operate and straighten. There has never been any mention of removal of any toes. I would get lots of opinions before I removed it. As for shoes, we just knit little booties for the house, sandals for the summer, and boys wide and big shoes for the winter (we only get rain here). Hope this helps! Rene ========================================================================= Date: Mon, 30 Mar 1998 12:33:37 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: HAROLD E TYRE <HETSRT@PRODIGY.NET> Subject: Hello Lisa! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello Lisa, this is Robin Hill. I know all of these Emails are confusing. My daughter and I are visiting my parents this week in Martinez, Ga. I added them to the listserver this weekend so they could get to know this wonderful family Mike and I already appreciate so much! I noticed my husband responded to your Email; however, he did not answer your question about Carmen's doctors. We are using the doctors at Emory University (Egleston Children's Hospital) in Atlanta (We actually live in Newnan which is 30 miles southwest of Atlanta). Dr. Robert Wood is Carmen's cranial facial plastic surgeon; Dr. Joseph Petronio is her neuro-surgeon; and Dr. Robert Howell is her plastic surgeon for her hands. I don't have all their numbers with me here in Martinez, but can get them to you when I get home if you are interested. What is your daughter's name and where do you live? I would love to chat some with you; looks like we will be going through the surgeries, as well as, the every day baby stuff at about the same time! You can Email me privately at HETSRT@PRODIGY.NET until Sunday (April 5th) and then at CARMENRAE@PRODIGY.NET after that!

Look forward to hearing from you,

Robin Hill ========================================================================= Date: Mon, 30 Mar 1998 13:03:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: 7 things a disabled kid wants you to know: Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel,

That was beautiful. The part about not saying they can't do things because of their disability really hit home for me. I don't treat Andrew like he has a disability, but sometimes I do think to myself that, "Andrew will never be able to do that because of his hands", but you were right, I should just wait and see and let him at least try. I don't know about anyone else, but I don't want Andrew to try something and not be able to do it and then think to himself, "oh if I was just like everyone else, then I could do that." Does anyone have any suggestions on this? My husband has very low self esteem about his disability and I want Andrew to be as confident and outgoing as he possibly can be. He already loves everyone and I always tell him how proud of him I am and how good he is. I tell him I love him and that he is my special little boy at least twenty times in a day. Should I be saying "special"? I guess this is to moms out there with older kids. But anyone is welcome to help.

Thank you in advance.

Lynn Thornquist (Holliston, MA) ========================================================================= Date: Mon, 30 Mar 1998 13:02:58 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: RANGERJJC <RANGERJJC@AOL.COM> Subject: Re: doctor references Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Did you ask about resorbable plates and screws? Had they been used, another procedure to remove them would not have been needed. Just a thought. ========================================================================= Date: Mon, 30 Mar 1998 12:33:34 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: disabilities MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Lynn,

Every child has certain capabilities even if not apert's. I let Nick set his won limits. Sometimes he needs extra time to reach these abilities but many can be reached. For example: Last year he was ready to ride his bike with no training wheels but he needed that security blanket I guess. Well, he has been talking about having a new bike. I told him that 20 inch bikes do not have training wheels; So last Friday I took him down to the bike shop and we found a bike that he really would like to have. He started out wanting a mountain bike but mountain bike's only have hand brakes and with his fingers being short, he would have a very hard time trying to stop quickly because the hand span is not there. So instead of a mountain bike we found a sleek low rider that has one hand brake and also has the foot brakes. It has the high rise handlebars and the gears are slightly lower. This bike was just perfect, so when he was not watching I put a deposit on it and he will get it May 3 on his birthday. Needless to say when we got home, I took off the training wheels and guess what. He took right off like I knew he could and the training wheels are now obsolete. Nick also swims like a little fish. Tying shoes is not something that has been totally mastered yet. He knows what to do but he cannot tie a tight knot. If you have any particulars in mind as far as what some of the older kids can do. Please just ask. We have all been there, In my case I had to find out alot by myself because I didn't have this listserv to help me back then. Nick will be 8 yrs old in May and he is definitity my pride and joy.

Judy

jamerman@uti.com ========================================================================= Date: Mon, 30 Mar 1998 13:42:54 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: hand surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Well, after weeks of bardering for time slots..we have finally gotten Jordan on the surgery schedule for the release of his thumbs..May 8 is the date, and as relieved as I am to start, once again, as w/ anything new and unusal, the anxiety starts. UGGGG!!!! But soon he'll be able to do sooo much more..even w/ just the thumb release!!!!

As far as physical differences..well we can't really do much as far as just letting Jordan go..well, b/c he really can't do much. But hes figured how to use his hands for almost everything..except the bottle and spoon holding he so desperatly wants. But Joe and I just give him his toys, he drops them we give them back..like Lynn I don't want him to develop a self-esteem problem, but in our minds he can do anything he wants..it may just require a bit more mind skills for adaptave purposes. Our plastic surgeon keeps saying how Jordan won't be a concert pianiast..and my mom really hit home when she told me, to tell the doctor that we'd send him an invitation to his first gig..b/c he can do whatever he wants..and I guess I fell that after they finaaly master a skill, that was so difficult at first, then the self-esteem will really take off.

Anyho..just my input..always more than anyone bargained for!!!!

Jenn(Tampa/St. Pete..weather like this is why we live here..brezzy, sunny, 85) ========================================================================= Date: Mon, 30 Mar 1998 14:13:39 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: HAROLD E TYRE <HETSRT@PRODIGY.NET> Subject: Re: 7 things a disabled kid wants you to know: MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

---------- > From: Thornq <Thornq@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: 7 things a disabled kid wants you to know: > Date: Monday, March 30, 1998 1:03 PM > > Raquel, > > That was beautiful. The part about not saying they can't do things because of > their disability really hit home for me. I don't treat Andrew like he has a > disability, but sometimes I do think to myself that, "Andrew will never be > able to do that because of his hands", but you were right, I should just wait > and see and let him at least try. I don't know about anyone else, but I don't > want Andrew to try something and not be able to do it and then think to > himself, "oh if I was just like everyone else, then I could do that." Does > anyone have any suggestions on this? My husband has very low self esteem > about his disability and I want Andrew to be as confident and outgoing as he > possibly can be. He already loves everyone and I always tell him how proud of > him I am and how good he is. I tell him I love him and that he is my special > little boy at least twenty times in a day. Should I be saying "special"? I > guess this is to moms out there with older kids. But anyone is welcome to > help. > > Thank you in advance. > > Lynn Thornquist > (Holliston, MA)

Lynn,

I think you should let Andrew try whatever he wants to (well, within reason) and support him just as you would ANY child. I plan to teach Carmen that there are things that she may not be able to do, not necessarily because of her differences but just because NO ONE can do everything! However, I will let her try to do things and if and when she fails at them I will smile at her and say, "Better luck next time!" Continue to love Andrew and DEFINITELY tell him he is special! I don't think Andrew is special to you because of his differences, he is special to you and everyone who knows him because he is a unique little person with special qualitites all his own!

Robin Hill ========================================================================= Date: Mon, 30 Mar 1998 21:14:15 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>

Hello family!

Judy, I can relate to this!

"He started out wanting a mountain bike but mountain bike's only have hand brakes and with his fingers being short, he would have a very hard time trying to stop quickly because the hand span is not there."

I don't even bother with these fancy bikes. All I want is a old fashioned bike with pedal brakes! My dad hasn't quite grasped "why" yet - go figure.

I have an potential interview coming up with an agency that produces those ads with the grocery sales. With everything else going on with me and my family, I almost forgot about the job and lack thereof.

One phrase continued to cross my mind this weekend "Embrace solidarity" . I thought I was trying to convince myself to be content with being alone. Because I felt "alone" a lot this weekend. However, when I looked "solidarity" up, it means "complete unity, as of purpose, feeling". what really struck me when I saw what it means was a conversation I had night with a friend. I told her I didn't feel like I had any purpose in life. Her response was, "you do, you just don't know it yet". Hmm.

Something to ponder.

Joanne Old Man Winter FINALLY gave up!, in Ohio (yes, I was the one pleading for snow earlier. I like the stuff, only when it's susposed to be here!!!)

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Mon, 30 Mar 1998 19:25:25 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: 7 things a disabled kid wants you to know: MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Never say never! With all of the adults with Apert that I have been in contact with, I am amazed at how well they have all done and with such great personalities!

Many of the older adults did not have the benefits of having all of their fingers released. Several only having the thumb and index fingers released. There are plenty of adults that play piano very well! One woman told me that she wouldn't want to have the rest of her fingers separated now because she would have to relearn how to do things. She does well with everything and only gets a little frustrated when she sews. She is married, the proud mother of a teenager (born without Apert) and a great pianist.

I am also impressed with how nice their handwriting is, especially since I see how hard it is for Michelle to learn.

Give your children every chance to try what they want. Granted watching them climb the jungle gyms is a bit freightening but they need to do what the other kids are doing because they are just the same as them. Not all "typical" kids can accomplish all that they attempt either but as long as they gave it their best shot they will build self esteem. If you project in them that they can't do it you will only reinforce their "differences" and make them think that way before they even try.

They grow up with these hands and that is what they know and learn with. We tend to think of what it would be like not to have joints in our fingers when we do things because we have them. These children don't know what it is like to have joints because they never had them.

This is why I love getting stories from adults for my newsletters. They really let you know how well they can do with lots of love and encouragement. They all say that the best thing their parents did was TREAT THEM LIKE EVERYONE ELSE (and include them in their medical decisions when they were old enough to understand).

Lots of children are on little league teams, playing piano, swimming (even with ear tubes - use ear plugs) and they are all having a ball. Let them go for it if it is something they really want. They will amaze you and be grateful to have tried.

Christine Clark (on vacation in La Jolla, CA where the sun is shining for at least one day, hah!) ========================================================================= Date: Mon, 30 Mar 1998 23:02:49 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: 7 things a disabled kid wants you to know: Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Thank you Robin, you are so right. And I really like the work unique! I think I'm putting my feelings into Andrew, and that is exactly what I don't like about my husband sometimes. Because of his disability, I think he anticipates a little too much about how people will treat him. I have never personally been int he position, so I can't say I know how anyone with a disabiltiy feels, but I don't want Rich to put his insecurities as a child on Andrew.

This is a questions to the whole Listserv.......

Does anyone think that Andrew will end up blaming his father? And if so, how do I try to prevent that? It is nobody's fault that we received such a wonderful little boy and what a gift he is!!!! Okay...Okay....so I need a little more help from everyone. But that's what we're all here for, to help eachother, so I'm taking advantage of everyone's knowledge and experience. Thank you in advance.

Lynn Thornquist ========================================================================= Date: Wed, 1 Apr 1998 08:08:35 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Alice Lynch <goddess@CAPITAL.NET> Subject: Re: Will Son blame father MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi Lynn:

My son Colin has a father with a hand disability, and I have only seen their relationship get better over the years. My husband never pays much attention to his own handicap and even less to Colin's. I don't think your son will blame his father. It all depends on how your husband feels about himself. Does he blame himself? Children, all children model behavior. If your husband treats his life like a gift, your son will see this and respond.

Work with your husband on his feelings and it will spill over to Andrew. I have notices that children tend to see the good in everything and everyone until life or people tell them otherwise. Do all thing with love as your motivation and you've done the best job you can.

Good luck,

Alice ---------- > From: Thornq <Thornq@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: 7 things a disabled kid wants you to know: > Date: Monday, March 30, 1998 11:02 PM > > Thank you Robin, you are so right. And I really like the work unique! I > think I'm putting my feelings into Andrew, and that is exactly what I don't > like about my husband sometimes. Because of his disability, I think he > anticipates a little too much about how people will treat him. I have never > personally been int he position, so I can't say I know how anyone with a > disabiltiy feels, but I don't want Rich to put his insecurities as a child on > Andrew. > > This is a questions to the whole Listserv....... > > Does anyone think that Andrew will end up blaming his father? And if so, how > do I try to prevent that? It is nobody's fault that we received such a > wonderful little boy and what a gift he is!!!! Okay...Okay....so I need a > little more help from everyone. But that's what we're all here for, to help > eachother, so I'm taking advantage of everyone's knowledge and experience. > Thank you in advance. > > Lynn Thornquist ========================================================================= Date: Tue, 31 Mar 1998 12:04:02 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: 7 things a disabled kid wants you to know: In-Reply-To: <2a958b5.35206aea@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 11:02 PM 3/30/98 EST, you wrote: >This is a questions to the whole Listserv....... > >Does anyone think that Andrew will end up blaming his father? And if so, how >do I try to prevent that? It is nobody's fault that we received such a >wonderful little boy and what a gift he is!!!!

Lynn,

As an adult with a cleft lip/palate and who had probaby around 15 surgeries from 7 weeks to 25 yrs (and with no kids, as yet, at nearly 30, but thinking in those directions, long-term . . .), I'm beginning to think that the ONE thing that I can do to make sure my child with a cleft (should I ever have one) doesn't blame me is to finish my OWN business around my OWN cleft. As much as I really hate accepting the hard fact, there's not much I can do about my genetic risk, (aside from doing what I can to be completely informed about the risk . . . ). BUT-- I definitely do have ways to work on the emotional left-overs from the cleft experience. That much I *can* control . .

Truthfully, I've yet to meet an adult with a cleft or any other kind of facial difference who's "finished" dealing with the issues--I don't think anyone does. The issues change, they lose their power and their intensity with passage of time and with work on them, and maybe some higher purpose or meaning starts to suggest itself, but the issues and the memories don't ever go away. And having a child (facially different or no) will DEFINITELY bring the issues and the memories to the fore, as with ANY parent's childhood issues coming up with each corresponding developmental stage that the child goes through . . . . But--and this is noone's fault, because the resources were just not in place for earlier generations--most of us do reach adulthood with significant things not dealt with, or even, in many cases, not even CONSCIOUS that the issues exist at all. That's why I get so bent out of shape every time I hear/read an adult who says "I'm well-prepared for the birth of a child with a facial difference-- after all--it happened to me, and I've lived through the experience, and so I know what it's all about . . . " The fact is, our generation and earlier just didn't have the psychosocial support (teams weren't very common, and very few had psychologists on board or any attention to the issues at ALL), and a lot of issues went totally unnoticed, and so there's no *way*, even under the best of circumstances, we could've had it all worked out . . .

So, as for me, anyway, if and when I ever do get pregnant, I will make sure that my child (cleft or no) and I are at least checked up on at every step of the way, every developmental stage, by some outside professional (psychotherapist, etc) who will be straight with me if there are problems (ie, not just tell me what I want to hear . . . which is that everything is OK . . ) . I know very well how a child can cover up big problems--I did it myself. Noone thought I had any problems coping at all (at least until I finally crashed in college with a major depression . . . ) Sometimes even the most conscientious parents really will be the last to know . . .

I've done several years' worth of work around the issue of my cleft (anger work, grief work, looking at how my parents reacted, how my childhood was different than "normal," etc etc etc), but I know that those issues will be brought up again, and approached from a different angle if I ever do have a child. Another "opportunity" for my own healing, in a way . . . I guess what I'm saying is, there's a LOT of complex stuff that makes up the experience of growing up with a facial difference--enough so that just talking about strategies for the current situation may not be enough to change what's down deep in your husband's psyche. I think that (own opinion, clearly labelled) unfortunately families where an anomaly has recurred often have to do double-duty to catch up, dealing with both the past and the present at the same time . . . Not easy.

The tendency for a lot of adults who've been through the years of surgery, etc., is to say "that's all in the past, I don't want to go there and re-open old wounds." True, maybe, but it seems to me, after watching some families for a while now where recurrence of a difference has happened, that they're GOING to be reopened anyway, be it directly or indirectly . . . SO, I guess if I had advice, it would be to very gently encourage your husband to look at his own past (even saying, if you mean it, that YOU are wanting to know more about his feelings from those past situations), and if necessary, go back and heal some of those wounds. Because kids are very intuitive, and they can sense what's ok to share with a parent, and what is not ok, and so should be "buried", because it might hurt the parent to hear it . . .

I don't think, honestly, that if the emotional work around their difference has been done by the affected parent, that any child could grow up blaming the parent. (ie, I don't blame my grandmother for passing along her genetic tendency toward lousy feet, for example). But I can *definitely* see some blame being tossed around if a parents weren't willing to look at the hard past issues/emotions, and the child ended up paying the price because of it, and the parent weren't able to be fully emotionally available because of their own left-over stuff . . My way too long .02, Lark ========================================================================= Date: Wed, 1 Apr 1998 00:40:12 -0300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gabriel Dantur <gdantur@IMPSAT1.COM.AR> Subject: Dr. Daniel Marchand MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi big family !!

Our little daughter is now one month old and doing fine (specially when crying for her breast feeding: quite an Italian soprano).

We are now getting ready to make a trip for an interview in the US. Someone told me about a very famous doctor in France, Dr. Daniel Marchand doe anybody know anything about him ?

Second request: Does anybody know how to get in touch with the Apert team in the Boston Children's Hospital ?

Our best wishes and prayers to evry little one facing surgery in these days.

Thanks for your warm family feeling you give.

From Argentina, land of good meat and soccer: Gabriel, Carolina and Catalina Dantur