Martha Osborne, the founder of Rainbow Kids and an all around great advocate for children with special needs, called me in the fall to suggest we work together to help families who are considering adopting kids with special needs. I jumped immediately, and was honored that Creating a Family was included.
As the national adoption education organization, what we can bring to the table is education. Our mantra is “information is power”. We don’t try to talk people into adoption over infertility, or into a particular type of adoption. We do try to give you information so you can decide what is best for you.
When deciding whether to adopt a child with special needs, parents need unbiased accurate information. Working with Rainbow Kids and Love Without Boundaries we will be producing educational resources specific to the top special needs. Yesterday’s Creating a Family show was on one of the most common special need in adoption–cleft lip/cleft palate. The panel was phenomenal–4 experts that all kids with cleft lip/palate will utilize: a pediatric craniofacial plastic surgeon, a maxillofacial prosthodontists (a specially trained dentist working with cleft issues), a speech therapist, and a feeding specialist. I am very proud of this show and hope it will be used widely by agencies and nonprofits advocating for special needs adoptions.
Resources to Help You Decide Whether to Adopt a Child with Cleft Lip/Cleft Palate
- Families that live near a center the specializes in the holistic treatment of children with cleft lip/palate are fortunate indeed. But as the experts on yesterday’s show pointed out, these centers exist in almost every state. To find one, go to the American Cleft Palate-Craniofacial Association (ACPA) website where they are listed.
- Rainbow Kids has a terrific special need section with a thorough discussion of over 45 special needs, including cleft lip/cleft palate.
- An informative article in the current Rainbow Kids newsletter on cleft lip/palate.
If you have adopted a child with cleft lip/cleft palate, what has been your experience?Image credit: Trinity Care Foundation
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You guys are awesome! Thank you so much for taking the time to share your stories! I needed this information!
We are adopting a 9 year old from China. Her cleft palate has not yet been repaired. Any feedback would be appreciated. Thank you.
Jennifer, most of the info in the radio show will be applicable for you. Most of the kids who have had their cleft repaired before adoption, will have the repair surgery re-done once home with access to the really great plastic surgeons available in developed countries. So the surgeries would be about the same.
I can’t imagine my life without my daughter! We adopted her at 9 mos old. Our experience has been that it’ s not a piece of cake, but I think it’s totally doable for most families. I think our daughter has been fairly typical, but just like anything, severity can vary greatly. Dd has had lip repair (w ell done in Taiwan), palate repair, pharangeal flap, 2 sinus surgeries, 4 sets of ear tubes. Speech services, but now is very understandable. She’s 8 now. We had the advantage of getting her very young and her care was so good in Taiwan. When you add all of the thing up that go along with cl/cp it sounds like a lot, and I don’t think it’s a “”minor” special need – correctable, yes, but better classified as moderate. However, things don’ t all come up at once, and you just deal with them when they do. Day to day life is very normal. Important considerations are access to medical service/speech services and insurance coverage. utl
Our daughter has a cleft lip/palate, she is now 3 1/2. We brought her home from China in April of 2012 with her lip poorly repaired and a very wide 3rd degree cleft of her palate. Honestly, for us it has not been a major challenge. I was prepared, did my research, and spoke to the cleft specialists in our area to educate ourselves on the procedures she would need. She had surgery 2 months after being home to create her soft palate, and re-repair her lip and nose. The surgery and recovery was painful but after 3 days we were home, and she was eating everything in sight! She now has a plastic plate called an obturator covering the roof of her mouth so the bones of her hard palate can grow together as much as possible. She will have another surgery this summer to take the plate out, close what is left of the cleft, and her alveolar ridge. Her speech is great, she does have difficulty w consonants and some words, but she is understandable and it will only get better. She will probably need braces as a young teen, and maybe a nose and or chin revision in her late teens, if she wants it. She receives speech therapy 2-3 x week which is mostly covered by the county adn school district. She also had ear tubes put in last year which greatly improved her hearing.. So even though it sounds overwhelming,on a daily basis she is just our little bubbly happy girl….Our biological son had bad asthma as a baby and toddler and that was a daily very stressful challenge. Some people worry about her lip scar, which honestly I don’t even see anymore… She is just beautiful!
Chris, thanks so much for sharing!!
I have adopted a child with cleft lip/palette. I can not understand anyone thinking this is a serious issue. Yes, surgeries are needed along the way but most are outpatient and quick recovery. Each recovery time also gave us time to bond as parent/child during that time of nuturing her. I would do it again in a heartbeat if the world didn’t think I was to old. Age is a matter of the mind.