Cleft Issues You Deal With

I had a waiting parent ask me specifically more about adopting a child with a cleft lip and cleft palate. I thought I would share my response to her:


I will be happy to talk to you about CL/CP. It is not an “easy need” in the terms of SN world. Some people are confused when I say that. I am not one to sugar-coat this need. Yes, Shelby is a beautiful little girl, yes she is intellectually perfect, yes her need is “repairable”, yes she does not have a “life threatening” SN. However, there are a lot of things that also go with her SN.

(First off, if you truly FEEL like the Lord is leading you to a little one with CL/CP, I will be the first one to agree with you to adopt this route. I truly felt a HEAVY heart that Shelby had CL/CP before I found her, so I totally understand the calling.)

OK, so now on to the backend of CL/CP that a lot of people don’t realize. Shelby’s SN is an EVERYDAY need! Some SN are not everyday needs, like Faith’s repaired heart condition. I don’t ever think about her SN except when I see her large scar down her chest. Even then it is just a reminder to me of what a miracle it is that she is completely HEALED.

Shelby has speech 4 days a week-every week! I take her to school at 7:15am, then I return to pick her up at 8am, this is at the public Elementary School. Then Shelby has a private teacher that goes to her preschool once a week. I pay $35 per week for the private lesson. Remember this affects the whole family since the others have to get to school early on those days too, which means earlier to bed, earlier getting up, etc.

Shelby has had 2 very painful surgeries since we have been home. She will have at least 2-4 more surgeries in her future. Both surgeries consisted of 2 nights in the hospital and a lot of tears (mine and hers) for at least a week afterward. When you have other children, you have to be aware of the implications the surgeries put on your family logistically. Meaning you are not there to “babysit” your others, take to school, etc. Also we don’t have terrific insurance in terms of deductibles etc. So each of her surgeries cost $2500 EACH out of our pocket. I am not saying she isn’t worth it, I am just stating the facts.

Shelby has an everyday EMOTIONAL need that new parents might not realize. She can’t talk like other kids can her age. She is now 4 years old but still talks like a “baby”. I can understand her 95% of the time, but others cannot. Now that Shelby is older, she is expected to speak clearly, but she doesn’t. This affects her on an emotional level since now she understands that she is “different” than her friends. I can only imagine that this emotional need will only increase as she gets older. Right now it is very controlled considering the fact that she always has adults there to look after her and to make sure that the other kids are not bullying or teasing her. Once she starts branching out into her own peer groups, she will have to learn how to deal with the comments on her own.

All of that said, I don’t want to scare you away from CL/CP children. I just want you to be fully AWARE of what comes with this SN. Shelby is an amazing child and she was always meant to be in my family. I have done tons of research on her SNeeds and will continue to educate myself as she grows. Also I did my homework before I ever saw her face. I was immersed in educating myself on this need since I just knew that was the path God was leading me down. If you have the same calling, then I say go for it once you too have done your homework and you feel comfortable with taking all the good along with the bad :) My Shelby is SO worth it!!