Cleft lip and palate

I thought i would write this for anyone who is considering a child with cleft lip/ palate or even if they are not: People ask is cleft lip and palate a difficult special need? The answer is mostly no and sometimes a little yes.
First of all the majority of cl/cp kids are healthy and happy. Kids from China rarely have associated "syndromes" you can read about, although it does occur. They need several surgeries anywhere from 2-10 during childhood but most are outpatient or overnight stay with fairly easy recovery. There are doctor visits and check ups lots of folks use a "cleft team" which are usually located at larger metropolitan centers, but you can find experienced plastic surgeon almost anywhere. Speech therapy is needed in varying degrees depending on severity of cl/cp, age of child at repair and general temperment and ability of child. Some need little others need lots. Some need private speech, others just need what school or early intervention programs can provide.
The part where I feel it can be a little challenging SN depends mostly on access to specialists and speech therapy. Also the surgeries can be scary. It's hard to watch your baby be wheeled of to surgery time and again for surgery. Knowing they will wake up hurting. I wonder if at some point he may say no more surgery, too much pain. Already he refuses pain medicine after surgery
because it tastes nasty.

Only other thing I can think about is some parents would not want their childs special need to be obvious to others. A child missing limbs or with cl/cp would be more obvious wheras some conditions might not be so obvious. For us that was not really a concern but it is for some.

These are just some general thoughts. If anyone is thinking about adopting a child with cleft there are tons of Internet resources and several great and informative yahoo groups to join and find out more!! Obviously cl/cp can have some challenges but is a SN that is not a big deal. Most of the doctors appointments are arround surgical times. Our son has been home 3 yrs and had 2 palate surgeries plus tonsils/tubes so 3 surgeries.

Speech therapy has been covered by insurance and he gets extra speech at school. The last year we went with just the school speech, but now that he's had palate extension we will resume private speech as well.


- Amanda & Roland