Calling all special needs parents

I am compiling a list of special needs, agencies and resources. I would be SO grateful to you guys if you would take a minute and send me any or all of the following:

1) your child’s SN (and if they are home, approximately when they came home)
2) your agency and contact info if necessary
3) any resources that you found particularly helpful when researching your child’s SN

Feel free to leave a comment or email me privately at chrisnstefanie@gmail.com.
Did I mention how stinkin’ grateful I would be if you helped out? Because I really would be, really.

THANK YOU so much!!

Signature

Comments

  1. I’d be happy to help!

    Madilyn Grace
    Home: 3/08
    SN: Unrepaired Cleft Lip/Palate
    Agency: Lifeline Children’s Services
    Helpful Sites: Yahoo AdoptCleft Board, http://www.cleftline.org, http://www.widesmiles.org

    BTW, http://www.ourchinesechildren.com
    is a great database of children adopted from China (NSN and SN).

  2. Lindsey's mom says:

    HI
    Lindsey Li
    Home 7/07
    SN unrepaired CL/CP
    Agency: ASIA of Oregon
    Helpful info: cleftline.org
    Shriners Hospital of Portland

  3. Perfect!
    Thank you Tammy and Kathy!! I am so grateful for your help on this :)

  4. Our SN girls from China are:
    Jailyn Hope
    Home 2/07
    SN: Unrepaired Cleft Lip/Palate
    Agency: Lifeline Children’s Services
    2908 Pump House Road
    Birmingham AL 35243
    http://www.lifelineadoption.org

    Jorja Noelle
    Waiting to be united!!! TA 07-24-08
    SN: Hep B
    Agency: Lifeline Children’s Services
    2908 Pump House Road
    Birmingham, AL 35243
    http://www.lifelineadoption.org

  5. Maggie Mae
    Home 4/11/08
    SN: repaired VSD/possible Hep B
    Agency: AWAA
    http://www.awaa.org
    Helpful sites~
    China Heart Children yahoo group
    Waiting Children SN China yahoo group
    hbv-adoption yahoo group
    *all of these I think you are a member of?

  6. a Tonggu Momma says:

    Do you want medical special needs only, or would you consider SPD as part of that group?

  7. Here’s my contribution:

    Mia Eliana
    home: 4/07
    SN: Missing left arm entirely (probable amniotic banding)
    Agency: Lifeline Children’s Services
    http://www.lifelineadoption.org
    Helpful sites: Yahoo group Adopting Children With Limb Differences

    Sherri

  8. The Sharp Family says:

    Hi!

    Norah Catherine
    Home 07/08
    SN: Hemihypertrophy/Hemihyperplasia
    Agency: CCAI
    Sites:www.hemisupport.com

    Glad to help! This is a pretty rare SN… Ask away if you need to!!

    Penny

  9. Mom to five says:

    Fengmei
    home 9/18/06
    SN: club foot
    Agency: Villa Hope

    Xin Jie
    home 9/5/2008
    SN: cleft lip/ palate
    Helpful sites: Yahoo cleft board
    Agency: Wasatch International

  10. Wow, guys, THANKS for taking the time to share your child(ren)’s info, it’s a HUGE help :)

  11. Not a problem!
    Lucy LiKun
    Home 5-07
    SN: HepB+
    Agency: CCAI
    Helpful places: Sorry, no sites. Mostly from the International Clinic at Children’s Hosp of Columbus, Ohio and other families.

  12. Hi Stefanie,

    Mia An Qi
    Home: 12/06
    SN: VSD & ASD (Known VSD; ASD found once we returned home)
    Agency: FTIA
    http://www.ftia.org
    Resources: I found the International Adoption Clinic at our local children's hospital to be the best resource.

  13. Nola Ann Chu Qi
    Home March 2007
    SN Brachial Plexus Injury to Right Arm
    Agency FTIA Families Thru International Adoption
    Shriners Children’s Hospital in Philly
    hope this helps!

  14. Nola Ann Chu Qi
    Home 3/07
    SN Brachial Plexus Right Arm
    Agency FTIA Families Thru International Adoption

    Since home Shriner Children’s Hospital in Philadelphia has been amazing

    Hope this helps!

  15. Hey Stefanie! :o)

    Karleigh Mei–waiting not so patiently for TA

    SN: corneal staphyloma and partial absence of right eyelid
    Agency: AWAA http://www.awaa.org
    Wish to heck I knew of a helpful resource…anyone??

    Blessings!
    Jenn

  16. Ashley and Mike says:

    Piper QiuHan
    On Day 90 for LOA

    SN: Strabismus and most likely amblyoplia

    Agency: CCAI

    Helpful Sites: http://www.strabismus.org, http://www.preventblindness.com, http://www.aapos.com

  17. Team Houston says:

    I am emailing you now.

    xoxo Michele

  18. I’m happy to help!

    Silas Charles Tuan
    Home: 7/08
    Special need: bilateral microtia and atresia (ear deformity of both ears)
    Agency: A Helping Hand
    Resources: http://www.microtia.us.com/

  19. Lydia, adopted 10/05

    SN: VSD (ventricular septal defect (hole in her heart))

    Repaired 11/07 at the Sanger Clinic in Charlotte, NC

    Agency: Dillon Int’l – http://www.dillonadopt.com/

    Resources: A very good pediatrician who took the time before we came home to explain the issue and the possible outcomes. A renowned pediatric cardiology clinic that even had a Chinese sonogram tech to help calm L when she had her first check-up at 1 week home.

  20. Chad and Tara says:

    Child’s name: Ava Lan
    Special need: cleft lip and palate, adopted at age 3 1/2, home for 6 months now!

    I enjoy your blog.

    Tara

  21. Mina Faith Kangni
    Sacroccogyeal Teratoma
    (tumor and coccyx bone removed in China)
    CWA agency

    Not to many useful sites,,, I did find a few other parents and spoke with them. not a very common SN..
    I have been researching different SN and have been wondering about the ones that are not as common. I have been looking at the most current Shared lists and looking up all the ones that I have never heard of……

  22. bytheriver says:

    Stephanie – Do you need information on Thalassemia/Trait? I can provide a list of contact and organizations.

  23. YES! That info would be GREAT :)
    Thank you!!

  24. Hi Stefanie,

    Chaislyn
    Home: 10/06
    SN: imperforate anus
    Agency: IAAP
    Helpful info: http://www.cincinnatichildrens.org/svc/alpha/c/colorectal/default.htm

  25. Anna 'B'anana says:

    I would love to help out:

    Sarah Ann Bearden
    Home: 09/07
    SN: Complex CHD
    Agency: CCAI
    Hospital: Doernbecher’s Childrens Hospital in Portland, OR
    Helpful Sites: John Hopkins, Yahoo ChinaHeartChild Board

  26. Sarah Lyn XiuYi
    Home: 6/07
    SN: Unrepaired Cleft Lip/Palate
    Agency: WACAP
    Helpful Site: groups.yahoo.com/adoptcleft, http://www.cleftline.org, http://www.widesmiles.org, Shiners Children’s Hospital in Portland, OR

  27. Makenna LinYin
    Home 8/08
    SN: VSD/ HEP B
    Agency CCAI

  28. Paul and Chelsea Gour says:

    Love to help!

    Claire Hope Kangtong
    Home:5/08
    SN:Repaired Myelomeningocele (spina bifida) and unrepaired right club foot and left vertical talus (opposite of club foot).
    Agency: Children’s Hope International
    Helpful Resources: Yahoo group-nosurgery4clubfoot. Dr. Dobbs at Shrinners, St. Louis, for the vertical talus- he’s an expert at this defect. Most doctors thought it was also a club foot so most children will not be diagnosed with vertical talus.
    Spina Bifida Association of America, ssba.org.

  29. Hi been following your blogs for a long long time, Love them. very inspirational.

    ChuYu Rao (we have not chosen her name yet)
    Not home yet Gotcha day 11/23/08
    SN: CL repaired in China CP not repaired, Hep B
    Helpful Sites: Yahoo Adoptcleft, Widesmiles.org, myadoptionwebsite.com blogs

  30. This is a great thing for you to do!

    Ryan
    SN: repaired cleft lip, unrepaired cleft palate.
    HOME: 3/07
    AGENCY: Harrah’s
    HELP: widesmiles.org, cleftline.org

  31. living4him5 says:

    So happy to help!

    Linzhi Rose Xiao Li

    Home 11/07

    SN:Arthrogryposis (not diagnosed until we were home)

    Agency: Great Wall China Adoption (Kim)

    Helpful sites: AMCsupport.org; TAG.org and Shriners Hospital, Chicago.

  32. One Happy Momma says:

    Camie Yong Ju
    Home: 5/07
    SN: Cleft Lip and Palate
    Agency: American’s Adopting Orphans
    Helpful info:
    Center of Adoption Medicine
    http://www.adoptmed.org
    Shriners Children Hospital of Portland, OR

  33. Cara Tianyu
    Home: 6/05
    SN: repaired cleft lip/unrepaired palate
    Agency: CHSFS
    Helpful info:
    http://www.cleftline.org, http://www.rainbowkids.org, Children’s National Medical Center

  34. Maylee Hope
    (coming home next month, hopefully)
    Spina Bifida
    Agency: Hand in Hand, United in Hope Pilot program
    Helpful info: China Spina Bifida yahoo group

    http://www.livinginrainbowworld.blogspot.com

  35. Here is our contribution!

    Luke Kellan Gabriel
    Home: 5/07
    SN: cleft lip and palate, both repaired at adoption
    Agency: Lifeline Children’s Services

    Logan Elijah Christian
    Home: 10/08
    SN: Cleft lip and palate, lip repaired at adoption
    Agency: Heritage Adoption Services

    :-)
    -Nicole

  36. Our 7 Blessings from God says:

    Will
    Home: 1/06
    SN: Cleft lip/cleft palate
    (both repaired in China- thanks to the Philip Hayden Foundation!)
    Helpful sites: yahoo groups, adopt cleft & cleft kids

    Levi
    Home: 7/07
    SN: Congenital Ectodermal Dysplasia
    Agency: CCAI
    http://www.chinesechildren.org
    Helpful sites: http://www.nfed.org

  37. Qiuqiu's parents says:

    Flynn QiuQiu
    Home 08/06/08
    SN unrepaired cl/cp
    Agency: CCAI Colorado
    Helpful sites: Yahoo adoptcleft board, LWB’s cleft clinic blog, cleftline.org.
    Note: The single most outstanding bit of useful information about the condition, which is surprisingly NOT easy to discover, is that the vast majority of children with a cleft condition will need multiple surgeries in the course of their early lives…and I mean more than a dozen, including major and minor procedures. Speech therapy is also a big part of the equation. I’m not sure why most people don’t know this. It does not (at least to our minds) make the condition any more frightening – but it’s an important thing to know and be prepared for, both financially and emotionally. The child will get used to it, as will the parents. But it strange that you will not hear this basic fact, even from most medical professionals. It’s very important to go to a cleft clinic at a local children’s hospital BEFORE adopting your child, so that you really have a clear understanding of the various medical procedures involved.
    We found that the most difficult thing was to convince our families that there would in fact be many, many surgeries over the years, and that this was normal and manageable. To some people, this sounds shocking – like a “life sentence”. But it isn’t. It quickly just becomes a normal part of life, like taxes and chores. It is, however, par for the course, and people should know that.

  38. Waiting for Mia Hope! says:

    Mia Hope YiNan
    Waiting to come home
    SN: repaired cleft palate – cerebral palsy – extra digits on both hands
    Agency: Living Hope
    http://www.livinghopeadoption.org
    Helpful Resource:
    Adopting_Children_with_Cerebral_Palsy@yahoogroups.com

  39. Chad and Sandy says:

    Sydney
    Home:12/06
    SN: NF1(neurofibromatosis type 1),Concave Chest(pectus excavatum)
    Agency: A Helping Hand
    http://www.worldadoptions.org

    BTW Sydney was misdiagnosed – her original diagnosis in China was cavernous hemangioma. So I know a bit about that as well.

    Sandy

  40. Here you go!

    Cassie Linghua
    Home 4/08
    SN: unrepaired VSD
    Agency: CCAI
    Helpful things: Yahoo China hearts site, Dr. lars Erikson (sorry, forgetting how to spell, have no time to look up!), CCAI SN group.

    My most helpful thing was to speak to real people who dealt with these things personally. I like to hear from Docs, but feel like another parent can tell me what it will REALLY be like!
    Btw-we researched tons of SN, and hands down, it was the personal stories that helped me.

    Becky

  41. Levi WenYu
    Ours 5/07
    SN:
    (as listed in his file):
    -PDA (heart condition)
    -external hydrocephalus (based on large head size)
    -possible atrophy to cerebrum

    (only the heart turned out to be an issue and required a surgery and is now considered repaired. the other issues simply do not exist in our little man)

    Agency- CCAI

    Helpful sites- none really. drs at Denver Children’s Hospital were our best resource.

  42. Glad to share…
    Emily Wan Ye
    Home 8/8/08
    SN: Bilateral Absent of Thumbs
    Short Radius Bones
    Minor heart defect found once home will correct in cath lab.
    Agency:Lifeline did homestudy
    Madison Adoption Associates
    I found other parents an our international adoption clinic to be the most helpful

    Blessings,
    Christine

  43. Fiona Geiger says:

    Colm Cole Geiger
    Home 3/08
    SN: Cerebral Palsy
    Agency: AWAA

    CHOP International Adoption Clinic

  44. Happy to share :)

    Sophie Mei LuQian
    Home: 9/08
    SN: Repaired VSD, developmental delay
    Agency: CCAI
    Helful Information: CCAI website, WC Yahoo Group for CCAI, myadoptionwebsite.com, and blogs of families who had adopted children through the WC program.

  45. Does strong willed count as a special need?? :)

    Christian Liu – from Dong Guan
    Home – May 2008

    Repaired cleft lip
    Unrepaired cleft palate

    Agency: Nightlight Christian Adoptions

    We go to the Craniofacial Team at Children’s Hospital of Orange County (CHOC). We will meet with them once a year and they will monitor Christian’s progress, letting us know what will need to be done when.

    He’s already had surgeries to insert ear tubes and he’s had his palate repaired. Both surgeries were done at CHOC. They are great.

    Helpful Yahoo group: adoptcleft@yahoogroups.com

    It can take months to get in to see a Craniofacial Team. It’s a good idea to make your appointment once you receive LOA.

  46. Here ya go-
    Thomas
    Not home yet – hoping for Jan/Feb
    SN: Congenital Cataracts in both eyes. Surgery at 9 months.
    Agency: GWCA
    Resources: I’m with Jenn. Couldn’t find anything eye related. Talked with a Pediatric Opthamalogist.

  47. anne & mike says:

    Hi!
    Luke Jun
    Home 2/08
    SN: bilateral club feet, hernia, undescended testicle, stage three malnutrition, developmental delay
    Agency: CCAI
    helpful if in Atlanta area http://www.mypedsortho.com/ Dr. Stephanie Martin

    Hong Dai Jie
    Home ?
    SN missing feet from ankle joint, 4 shortened fingers
    Agency WACAP
    Helpful Site: yahoo group for chinese children with limb differences

  48. I hope I am not too late to help out…
    (I've been out of town for a couple of days.)

    Shea
    Home: Feb. 2007
    SN: Unrepaired cleft palate
    (cleft lip was repaired in China)
    Agency: All God's Children International
    Resources: Texas Children's Hospital & Children's Hospital of Wisconsin

    Avery
    Not home yet….:(
    SN: Abnormal Sleep EEG
    Agency: All God's Children International
    Resource: Children's Hospital of Wisconsin

    Can't wait to see what you are "cooking" up!!!

  49. Sorry I’m late. Been out of town.

    MeiMei
    Home 8/05
    SN: above knee amputee/ PFFD/FH
    Agency: CCAI
    Resource: Limb deficiency team at CHOA-Scottish Rite-Atlanta

    Mac
    Home ’98
    SN: hearing loss
    Agency: CCAI
    resource: audiologists :)

  50. “Wen”
    Awaiting LOA
    SN: Hearing Impaired
    Agency: Great Wall China Adoption
    Helpful Sites: Yahoo DeafHOH-Adoption Group; also I’m an Audiologist so I guess I’ve been a resource to myself!

    Good Luck with whatever wonderful thing you’re doing!
    Melissa Neyland

  51. I may be too late but here’s another for ya!

    Brady
    Home 4/06
    Agency:WACAP
    SN: Limb difference–Missing two fingers, and two fingers webbed together.

    Most helpful resource:
    Childrens Hospital, Seattle
    Dr.Hanel–orthopedics
    And Ultimately our adult friend who only has a thumb on one hand. We really don’t even see it as a SN because of knowing our friend!

  52. Heather Thompson says:

    I'm excited to see what you're working on!

    Drew FuPeng
    Home- December 2008 or early January 2009 (waiting on TA)
    Agency- CCAI (chinesechildren.org)
    SN- microtia & atresia of the left ear
    Helpful Sites- CCAIWCP yahoo group; Microtia/atresia yahoo group; blog of another family SeekingOurSilas.blogspot.com to see how normal this can be to live with!; speaking with local audiologist at FSU regarding condition and treatments/options.

  53. Malia Jo
    Home 08/07
    SN-Cerebral palsy
    Agency CCAI/Co
    helpfull sites- hemi-kids list. various Cerebral palsy lists and lots of reading on the internet

  54. MississippiZen says:

    Stefanie,
    I’m glad to help with Raegan’s information but I’m out of town until mid week. I’ll send it to you then.

    Margie

  55. bbmomof2boys says:

    Hi Steph,

    You know Tiana’s stuff – we met in China when you and Chris were getting your precious son!

    Tiana Claire
    Home: 6/2008
    SN: VSD
    Agency: CCAI

    When we got her file we immediately sent it to a pediatric cardiologist at East Carolina University where I worked at. They are a very good hosptial for heart babies!!

    Please let me know if you need any help with anything for your special project. I’d be more than glad to help you out!

    Hugs,
    Carla

  56. This is a little late, but I wanted to jump on board as well.

    Mylee Zhao Lu-Ann
    Home: May 22, 2008
    SN: Club Feet and Hyper-extended kness
    Agency: Hand In Hand of Indiana
    Helpful Sites: Yahoon Nanjing Group, Dr. Ponsetti at Univeristy of Iowa (thanks Stefanie)

    I can’t wait to see what you have been working on. Knowing you it is going to benefit alot children.

    Mandi

  57. I'm just now getting around to reading your post and I would be happy to help out!

    Emma Elizabeth-Wei
    Home: 7/08
    SN: Club Foot (left)
    Agency: Children's Home Society & Family Services
    Helpful Sites: http://www.ponseti.info, http://www.six-feet.com, orthoinfo.aaos.org, chinaadopttalk.com

    There were many other sites that I used on a regular basis, but these were some that I found especially useful. I used Chinaadopttalk.com primarily to connect with other parents of children adopted from China, including those with special needs.

    Oh — and then there were things like this that helped me through my journey with secondary infertility, my decision to adopt, and my wait for my daughter:

    1. http://www.youtube.com/watch?v=IV9jiqS-74g&feature=related

    2. http://www.theinterviewwithgod.com/

    3. http://www.cmu.edu/homepage/multimedia/randy-pausch-lecture.shtml

  58. As blessed parents of three, we believe that all kids have special needs to one degree or another. The difference with kids adopted from Waiting Child lists is that you have a little more advanced notice about the most obvious challenges your child will face. With that in mind, here’s our “SN” child:

    Maddy
    Home: 8/2006
    SN: Unrepaired Cleft Palate
    Agency: US Asian Affairs

    Additionally, we have dealt with other “surprise SN’s” such as undescended testicle, febrile seizures, sacral dimple, tied tongue and severe food aversions (not allergies).

    If anyone has any questions about any of this, please feel free to contact me.

    Donna
    Our Blog: Double Happiness!

  59. Skubella Family says:

    Ruby Ming Catherine Skubella
    Home: 07/04/08
    SN: Age (10 1/2)and language barrier
    Agency: A Helping Hand

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