S12-3AL N224S, S12-3AL L5'2: L3'3N. W3,0 A6,065.

6715S3S Special Needs, Special Love: Living With Arthrogryposis

For Lauren and her daughter Kelly (names have been changed), daily li e is very di erent rom the lives o their riends! Although Kelly ta"es ballet lessons, learns #i$ed #artial Arts, and rides horses li"e many girls her age, she has gone through much more than the average si$% year%old to accomplish those things! Kelly &as born in 'ietnam in August o ())* &ith distal arthrogryposis type +! ,his condition caused her to have bilateral club oot, as &ell as hip dysplasia in one hip! From the moment she &as born, she has needed special care, and her adoptive mother Lauren is determined to provide the best possible care to the child she describes as a miracle! The Adoption Story Lauren &as a single &oman &ho &anted to adopt a child rom a oreign country! She began her search in -hina, but the -hinese government closed the country to American adoptions be ore her adoption &as complete! She then began loo"ing into adopting a child rom 'ietnam, and she planned to ta"e an older child! #ean&hile, a baby girl &ith club oot had been abandoned at birth and &as ta"en in by a 'ietnamese orphanage! Although Lauren had initially as"ed or an older child, she elt called by .od to adopt this baby girl &hen the orphanage as"ed i she &as interested! Lauren called her mother and sister to as" them &hat they thought about her adopting a special needs child as a single parent! A ter hearing about the baby, Lauren/s mom and sister both agreed that this &as the right child! Lauren continued &ith the adoption process! 0o&ever, Lauren decided not to tell any o her riends about her decision! She eared they &ould doubt her decision and &orry about her as a single parent, so she did not mention that her child &ould have special needs until the adoption re erral &as complete! As Lauren &as in the inal stages o the adoption, the 'ietnamese government also began closing its doors to American

S12-3AL N224S, S12-3AL L5'2: L3'3N. W3,0 A6,065.6715S3S adoptions! Lauren described the rest o the adoption process as a ight &ith the government to allo& her to bring her baby home! 3n #arch ())8, Lauren inally completed the adoption and brought Kelly home to Alabama! Surgeries, Services, and Care ,ype + arthrogryposis is usually associated &ith average to above average intelligence, and Kelly is very bright, &ith no cognitive disabilities! 0o&ever, her physical disabilities have resulted in many surgeries and medical procedures in her si$ short years! Kelly/s arthrogryposis is mild, but she has teratologic club oot, meaning that her brain tells her eet to turn in! 3nstead o being a problem &ith bone structure, it is a problem in the brain! 3mmediately a ter arriving in the 9nited States, Kelly &as ta"en to 3o&a to get her irst

surgery and body cast! She had si$ &ee"s o serial casting at the 1onseti -linic in 3o&a! She then relapsed in :anuary ()+), and she had to have a emoral and pelvic osteotomy to reconstruct her le t hip! ;y age three, Kelly had undergone our surgeries, including achilles tendon release procedures, and our serial castings! She no& &ears braces on both legs every day, e$cept or a e& hours a day &hen she is allo&ed to ta"e them o , and she usually gets casts in the summer! She may eventually need ull reconstructive surgery or her eet, but the braces allo& her to &al", run, dance, and ride her bi"e or the time being! Kelly has also su ered rom sei<ures and rages, so she no& sees a clinical psychologist! ,he psychologist helps her &or" through issues associated &ith her adoption and the hatred she has or her braces! Kelly/s primary school started her in an early intervention program at age three, during &hich time she also had physical therapy at home! No& that she has started school, she does not use an 321! She struggles most in 1!2!, so a surgeon/s note e$cuses her rom running and participating in activities that are too hard on her legs! 3n the classroom, though, Kelly is bright

S12-3AL N224S, S12-3AL L5'2: L3'3N. W3,0 A6,065.6715S3S and social, and she has many riends! Daily Life

2very morning, Lauren and Kelly &a"e up and ollo& a chart that outlines their morning routine! Kelly chec"s o each tas" as she completes it, and there are also categories or >positive attitude,? >spea"s respect ully,? and >helps around the house!? Kelly then rides in a carpool to school &ith t&o o her best riends! Lauren &or"s rom home during the day, and then she pic"s up Kelly and ta"es her to &hichever a ter%school activity she has that day! ,hey eat dinner together every night, and Kelly completes her chores! 5n the &ee"ends, Lauren and Kelly have chic" lic" nights, go s&imming, host sleepovers, and go to church! Lauren says that although Kelly is very brave, spun"y, and riendly, she o ten has a hard time &ith some o the other students at school! 9sually they are only curious, but their comments can come across as mean! Kelly hates her braces, and other children/s comments only ma"e her more sel %conscious! ,he only shoes she can com ortably &ear are -onverse high%tops, and she o ten complains that she cannot &ear lip% lops li"e the other girls! According to Lauren, one o the most di icult things about having a child &ith special needs is &atching her daughter be e$cluded or pic"ed on by other children! Lauren tries her best to ma"e Kelly see that she is beauti ul, uni@ue, and valuable! She has nothing but good things to say about her daughter! Advice for Teachers Lauren/s biggest concern about school is that teachers are o ten simply una&are o &hat is happening in their classrooms! When Lauren approached Kelly/s teacher about ho& Kelly eels pic"ed on in class, the teacher seemed not to have noticed the e$tent o the problem! ;ecause Kelly does not need an 321 or any special services or aides, it is harder or the teacher to recogni<e the social problems Kelly has! Lauren believes that the solution is to have smaller

S12-3AL N224S, S12-3AL L5'2: L3'3N. W3,0 A6,065.6715S3S classes or elementary students in general! Smaller classes &ould help teachers "no& their students individually, &hether they have special needs or not! Lauren as"s that teachers pay better attention to the needs and issues o every student! 4espite the issues she has aced, Lauren says she &ould do it all again i she had the chance! She believes that her daughter is a miracle and that her adoption &as a gi t rom .od! 0er most positive e$perience has been seeing ho& resilient and brave her daughter is! Lauren describes Kelly as sassy, stubborn, determined, unny, and strong, and the t&o o them are best

riends! Lauren pushes Kelly to be independent, and she "no&s Kelly can do it! She loves having a daughter &ith special needs because it gives her hope or the resilience and strength o all children B &hether or not they have special needs!