News & Updates


Stickler Involved People Newsletter

June 2002



 

Coordinator Comment

Bill and I were trimming some bushes this past weekend and were trying to decide whether to cut back or remove one. I was somehow reminded of the Kenny Rogers song lyric, to the effect that the toughest job is knowing "when to hold and when to fold." I thought of how that is a very tough decision in many aspects of our lives. We have two young teens and there are so many "roots or wings" decisions. We have made many other tough decisions about doctors, surgery or not, treatment or not. So have many of you and most of us have more decisions coming, whether about yourself or your child, about Stickler concerns and other concerns. I find the support of others in this group, along with the many varied experiences, to be one of the greatest assets I have to make some decisions. Thank you to those who share. Stickler - The Elusive Syndrome This book, written by Wendy Hughes, explains, in layman terms, the condition, possible medical problems, and how it can affect individuals. The approach is positive and leaves the reader with hope and skills to manage Stickler syndrome. Wendy's book is available for $28.50 payable to Stickler Involved People. The cost includes exchange to British pounds, shipping and handling. Send requests to: Stickler Involved People, 15 Angelina, Augusta, KS 67010

SIP will also forward membership fees to SSSG, to save you monetary exchange fees.

We, at SIP, want to express our best wishes for continued healing for Wendy. She had surgery in March and is on a slow mend.

RESOURCES

All of the other Stickler support groups in the world are referenced on www.sticklers.org

INTRODUCING A SIP

Hello to everyone old and new. I am Yona (Rheumatoid arthritis from age 19, eye involvement-glaucoma at age 28) and my son Yissy- severe PRS with cleft palate, requiring a tracheotomy, gastrostomy, /club feet (corrected), chronic lung disease-(needed oxygen), Heart murmur (mvp) two holes in heart-ASD/PDA (both corrected), ear tubes, terrible myopia (wears glasses), plus strombosis in the left eye from a "bout" with "septic shock" which also left a bit of fluid around his brain stem leaving him with a balance problem as well. (He is starting to sit alone for a longer time and he walks with

the aid of a "walker or MOMMIE.). He is 5 and 1/2 years old I am 39. So

much has happened that it was impossible to write, mostly because it has been a very emotional time. To all you new folks please bear with me as I fill in our great news... Yissy finally had his trach removed 3 weeks ago! Since Jan. we have been working on this, and not only the trach, but he does not required oxygen during the day and only a bit a night.... Since my "PINOCCHIO" has no more strings he has truly turned into a real boy, He started eating almost everything by mouth, crawling for the first time, giggling for the first time and saying Mommie for the first time. He is kissing more, laughing more and his eyes no longer hold frustration, pain, and anxiety. Now they hold MISCHIEF!!! We live in a city of miracles

(Jerusalem) and we are blessed to have this miracle boy in our lives. No more cuddling with oxygen masks in the way I cannot describe the feeling... Well to all of those who supported us for so long through this I must thank you . I wish we too could join you at one of the conferences maybe one year... We have educated so many here about Sticklers and how to live with chronic pain and illness . The most important thing and a necessity every day is Laughter and Chocolate! (not in that order!) I send my love to you all and blessing and prayers for healing and continued strength.. Shalom-peace from Jerusalem. Yona, and Yissy

(Editor's note: This was written over a year ago, when Yona was celebrating a great joy. We, on the list server, hear from her occasionally, but not often enough. Please keep a special thought for her, and all those in peril at this time. Also, as each of us is aware, not all physical problems are Stickler syndrome related and, therefore, not all Yona mentioned about Yissy are caused by Stickler syndrome.)

S

ΡΡΡΡΡΡΡΡΡΡΡΡ

CONFERENCE 2002

We will be holding the conference this year in Baltimore, June 14-16. By now, you have either made your plans to attend or decided to not be there. If, at the last minute, you can join us, call the hotel for reservations and 316-775-2993 to let us know. Last minute child care cannot be provided. Plans for the 2003 conference are in the works now, in the San Francisco area. Watch for the 2002 conference notes in September and for the announcement of location for 2003 next year.

 

APPRECIATED LETTER

I have two children that have been diagnosed as having SS. After finding this group I have decided that myself, my brother, my father and all 5 of his siblings and his mother have been afflicted with SS and of course the numerous cousins. My kids, myself, my brother, an aunt and my grandmother were all born with the cleft palate. The only symptom of SS that I am unaware of surfacing in the 4 generations that I have mentioned is the heart problem. The family has had the eye, hearing, joint problems and the cleft palate. But after reading the things that you guys have talked about, I feel that we can consider ourselves lucky!! Thank you, Sheila.

. AIRFARE HELP

We have mentioned this great assistance before. But keep the numbers in a special place, if you ever need help with air transportation to a specialist or to our conferences. The website is www.patienttravel.org , or call 1-800-296-1217 for financial help with airfare.

 

 

IGIVE UPDATE

iGive.com has so much to offer you and SIP that we want to make you aware again. At this time, iGive has extended its offer of a FREE $5 bonus for each new shopper until June 30, 2002 ! Time is running short. Unless you participate and spread the word Stickler Involved People will miss out.

On top of SIP earning up to 26% of each purchase by you, your family, friends, and coworkers, it is easy, with over 360 familiar stores (like Amazon, Lands' End, PetFood Direct, Office Depot, Best Buy) to choose from! Just sign up with SIP as the not-for-profit organization and make a purchase via iGive.com within 45 days of joining. SIP gets an additional $5 until June 30.

The Essence of Imagination (Iceberg)

"What we can easily see is only a small percentage of what is possible. Imagination is having the vision to see what is just below the surface; to

picture that which is essential, but invisible to the eye." Unknown

AN HONOR

Stickler Involved People, is one of reviewed

sources of health information now included on the healthfinder(r) Web site, the Federal Government's portal to reliable health information on the Internet.

The healthfinder(r) Web site is being redesigned, and we would like to invite you and your colleagues to "test drive" the new site before we "trade in" the old one.

Just visit www.healthfinder.gov/preview and let us know what you think of the new site.

New features of the redesigned site include-

· Daily health news

· Interactive online checkups

· More prevention, wellness, and alternative medicine resources · An expanded Spanish section · A new section just for kids 8-12

You can review the Stickler Involved People listing at: http://dev.healthfinder.gov/orgs/HR2507.htm

WEBSITES TO LEARN FROM

House of Lords supports first UK genetic database http://bmj.com/cgi/content/full/322/7289/755/b

Think you own your genes? Think again http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/2001/03/29

Genetics and insurance

http://www.prospect-magazine.co.uk/highlights/report_altman_april01/index.ht

 

Gene Variations Affect How Body Breaks Down Drugs http://dailynews.yahoo.com/h/nm/20010329/hl/gene_4.html

 

Signs of a Gender Gap http://www.latimes.com/news/science/science/20010326/t000026017.html

 

Determination first step on road to genome map http://www.washtimes.com/businesstimes/default-2001326204240.htm

Independent Living Centers http://www.ilusa.com/links/ilcenters.htm

10 Things You Should Do BEFORE Your Child's IEP Meeting by Lisa

Simmons

1. Read last year's IEP - It's important to review what came out of last year's plan. Was it successful? Did the methods of instruction work? Did the measurement process used really tell you if progress was being made? Were the goals & objectives really functional for your child? Also try to think back to the actual meeting -- what part of the discussion did you feel least prepared for? Remembering will help you prepare better this time around!

2. Update your advocacy notebook -- Hopefully you have a single book that allows you to keep all of your child's information (evaluations, old IEPs, correspondence with school & service providers, etc.) organized & easily accessible. If there is new information from Dr.'s, teachers, or related service providers that needs added to your book take care of the filing now. You'll be glad to have the most current information if the issue comes up during the meeting.

3. Do your homework -- is there any new information on your child's disability, have you heard about any promising new intervention strategies that caught your attention? Now is the time to check them out. Research them on the internet or contact a local resource person who can tell you more or provide you with information to review.

4. Come prepared to "grow" your team -- If you've found anything interesting during your research, the IEP meeting is an excell-ent time to share this information. Rather than contacting everyone individually or relying on one person to pass on your information, you can share it with everyone at once. If the information describe an intervention strategy you would like used in this year's IEP then be sure to bring copies so everyone can look over the information at once during the meeting. Few professional team members are going to be willing to sign off on some thing they don't understand or feel comfort-able with. By helping them learn, you maximize your chances of getting what you want.

5. Make your list -- Once you're organized & your research is complete is time to make your list. What are the issues you feel like really need to be addressed in your child's IEP. Remember other team members may want to add additional items during your discussion, but you don't want to be thinking afterwards, "Oh I really wanted to discuss X & forgot to bring it up." Right now, while you're calm & not under time pressure is the time to decide what the issues are from your perspective.

6. Prioritize -- Because IEPs are a team process they by their very nature demand compromise. So once you've developed you list, you'll need to go back through & divide it into 2 categories. A) the issues that are non-negotiable to me -- they must be addressed for me to give my consent for this IEP and B) the issues that I am concerned about, but I'm not sure how I want them addressed or what the critical components are. On these issues I'm willing to compromise or settle for minimal supports while we gather more information.

7. Decide who's coming with you -- IEPs tend to be extremely anxiety provoking for parents. When you are experiencing a lot of emotion it is unlikely that you will be able to absorb all the information be given to you. Having someone else there who can listen to the discussion & take notes will free you up to participate in the discussion & focus on your own agenda.

8. What about taping the meeting -- Recording IEP meetings can be a touchy issue for many school districts. However, if you cannot find anyone to come with you to the meeting you may want to consider tape recording it so that you can refer back to the discussion after you're home & calm. One caution, you will need to notify the school that you would like to tape record the meeting. Explain that it will be only for your reference & ask if there are any school guidelines or policies that you should be aware of regarding taping. Start this process as soon as you've been notified about the meeting as some school districts have time guidelines that the notice of recording must be given at least X amount of time before the meeting.

9. Determine your child's participation - If you see a future of self-advocacy for your child, then it is important to involve them in IEPs as early as possible. This will let them watch your advocacy skills & learn by imitation. It also give you the opportunity to get their input on what & how they would like to learn. If you aren't comfortable with your child attending the meeting, then consider how their presence can be felt by proxy. Two ways recommended by other parents are: A) Bring your child's picture & set it in the center of the table - this should effectively remind everyone at the table that the decisions made will impact the life of a real person & shouldn't be arbitrary or for convenience sake. B) Bring your child's portfolio -- originally developed to introduce new teachers to your child, the portfolio illustrates all that is unique & special about your child. This is a wonderful way to remind participants that everyone has strengths & special qualities to bring to the "table of life".

10. Review your rights! -- Right before you attend a meeting filled with professionals is the perfect time to read again how the federal laws "see" your role as parent. It will reinforce your feeling of importance within the team & also ensure that no one surprises you with any "questionable" tactics during the meeting. If you have completed all 10 steps you should be feeling pretty prepared. Now you can go into that conference room with confidence knowing that you are ultimate "expert" on your child!