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A Dose of Reality

April 13, 2009

I want to preface this post with a disclaimer of sorts: If you are considering adopting a child and/or are waiting to bring home a child with cleft lip and palate, I hope and pray this post is not DISCOURAGING. I really, really hesitated for so long to write it for that very reason. I hope it all comes across the right way. I also hope to convey to those who might consider CL/CP an easy need that it is not. It requires many surgeries over the years and much patience. Or at least that has been our experience. Would I do it all over again for our Li’l Miss? YES! Do I regret it? NOT ONE SECOND!

I have been asked lately if Li’l Miss understands English … and if she is talking yet. Well first, she understands everything we say from all I can gather. She really does. In fact, she can be quite perceptive, much like Mo, her older brother who is 6. They have a lot of similar personality traits and can be quite mischievous together. They also have a lot of fun and can be the worst of enemies and the best of friends. We still have people quiz Li’l Miss sometimes just to see if “she really does understand.” That gets annoying to us, so I would assume it can frustrate her at times too. I think people are either nosy or just curious. Either way, we try to just avoid that as much as possible. Oh and she can HEAR very well. I think a lot of people assume when a child does not talk (or in her case it comes out as babble) that they cannot hear either. It shocks me at times what people will say in front of her. Lately it has been comments like “how good she looks NOOOOWWWW.” I saw someone on an adoption board talking about people taking a ride on “stupid lane” and though we don’t prefer to use that word around here … sometimes it just fits. I wish people were more sensitive, but the more I think about it the more I realize adults so often talk about children who are standing there as if they are not standing there. I am guilty of it myself.

As for her speech, I wish I had more good news. I hesitate to write this next part … but here goes. The Prez and I both feel at this point in time we would not sign up for the special need of cleft lip and palate again. There. Well at least I feel better. Man, I really don’t like putting down that cold hard truth but it is what it is. Why do we feel that way? Her inability to talk and her ability to whine and scream and verbalize in every way other than with words is really starting to wear on everyone’s nerves. Now, she does beautifully with her sign language and shame on us for not teaching her more and learning more ourselves. Had I known that she would still not be using words at 6 months home, I would have been better prepared. If you are waiting to adopt a child with CL/CP, please learn as much sign language as possible. I think Li’l Miss picks up signs after seeing them one time. Seriously. She really soaks them up.

Now she verbalizes all the time, but mostly it is either babble or one of about 5 words she says. That list I had written down several months ago has dwindled. The thing is: she can drink from a straw, she can blow bubbles, she has no oral aversions as far as we or any medical professionals can tell. So why is she not speaking more clearly? We just don’t know. She will begin speech therapy after her palate repair. Why have we waited? After weighing many professional opinions and doing our own research, we feel given her age and her present state this is best. Many of the things a therapist would work with her on at this point involve areas where she does not struggle. Also, if she learned to speak with an open palate (and hers is 3rd degree), she would have to relearn it all once her palate is closed. That is the plain and simple skinny on that.

I always do this. I am adding this next part. I wish I would have put it in here in the first place. The BIGGEST reason we are frustrated at times, more than usual lately, is that it is clear the inability to form words is frustrating Li’l Miss and it separates her from her same-age peers. That right there breaks this Mommy’s heart. I see children come up to her and then it is as if she is alien because she opens her mouth and babbles. We have yet to place her in a classroom at church mainly for my fears of how she will be treated, though we have had to wait after her heart surgery and to keep her well for her lip repair. Still now she could go but I just don’t know. I have finally accepted that perhaps Li’l Miss needs to be receiving more than I can give. Thanks to people like Cheri who commented on this post and others sharing so honestly either on your blogs or with comments to me, I am going to really delve into seeing about her going to a local preschool that is a developmental preschool. Not only would they completely evaluate her developmentally, but I truly believe she needs this for a while. Maybe a couple of months, maybe more. I know she loves interaction with same-age peers and she could have that at this school. And not all the children are typical, though some are. The truth of the matter is she is lonely and perhaps so am I as we have had little interaction with same-age peers (me either) since she came home. The once-promised play dates before we traveled never came into fruition. A few did, but not from those who promised them. I can only guess the reasons why, but I know I haven’t pursued it so much either. In the end, I know Li’l Miss is a smart, sweet girl who I wish more people could see for who she is. I just wish they could see past her scars and struggles and see the Li’l Miss we get to enjoy every day.

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How do I end this post? I’m not sure. I guess I just wanted to share some of the struggles. We have our fair share, though the days are still filled with much joy.

41 Comments leave one →
  1. April 26, 2009 11:42 pm

    How I wish I could reach through the screen and give you a hug! I do understand what you are saying. We too have adopted a child with Cleft L/P. Ryan’s lip was repaired in China but we had his palate repaired about 5 months after coming home. He was 28 months old at adoption. And yes, he babbled a lot. We asked our guide in China what he was trying to say and she said ‘baby talk’. It is such a difficult thing to watch as your child is not understood and people look at you to interpret, but you are unable to. I think a lot of your feelings about thinking this is a bigger special need than you thought is the fact that it is hard to watch our children suffer. But I want to reassure you that what you are experiencing is normal and many of us have been there. And like you I felt like it would not get better. But it does! After Ryan’s cleft palate surgery he began speech therapy and we have seen consistent, gradual change. Our surgeon told us that he will be in speech for at least three solid years. He has made leaps and bounds!! Is he still behind his peers. YES!! But he is getting there and it is easier to now let him be with his peers and just let him be his age. Because he recognizes the improvement too. We talk very openly as a family about his special need. That his mouth was ‘broken’ when he was born and that the doctor fixed it but he needs to learn to talk better. He LOVES speech. It is his favorite time of week! Anyhow, I just truly want to encourage you. This truly is an ‘easy’ special need in the medical sense because it is amazing what doctor’s can do for these children. BUT it is HARD for us as parents and for the child at times to experience. That truly is the perfect example though of why these kids need us. Anyway, I hope something I said has been an encouragement to you!

  2. April 23, 2009 9:23 am

    We have been home for 18 months with our 3 year old CL/CP son from China. His repair (both lip and palate plus ear tubes) came just a month after we came home. He picked up signing very quickly and it was obvious to us when we brought him home that he could understand our English. But, he could not form words because his mouth just did not work like that. He spent his first 2 years of life learning how to use his own mouth in his own way. Now we were here trying to show him how to do things in a completely different way. I cannot imagine the stress he felt… I have never had to drastically change the way I do everyday things… but it must have been SO difficult on such a little guy. Not to mention at the same time he was trying to learn English and to fit into a family for the very first time.

    I am happy to say that at about 8 months at home (after we had been home for 10 months) he made the “B” and the “M” sounds for the first time. We were thrilled and expected things to progress really quickly. They did not. It has been months of hard work and speech therapy. He is learning day by day but he definitely goes through peaks and valley’s as far as progress is concerned. Lately his progress has been extraordinary and his desire to pronounce things (so that we can understand him) has increased dramatically. Suddenly he wants to communicate so badly and he understands now that we cannot understand him if he does not pronounce it correctly. That is a huge mental jump for a 3 year old.

    I guess what I am trying to tell you is that it will come. Just keep working and living and it WILL COME. She needs to step out of her comfort zone in order to learn speech and maybe she just is not ready to do that yet. She has had to learn how to bite, chew, and even breathe differently since her surgery. That is alot- think of the progress she has made… the speech will also be learned in time and I have a feeling that you, like we do with our son, will just be in amazement at her ability to take on the challenge.

  3. April 22, 2009 9:43 am

    Leslie, I do not have a child with CL or CP, but I’m so thankful that you put your thoughts out there. I often wonder if people know about the language struggles that come with it. We have a bio son with some disabilities and significant language issues (he is 8 now, could not say Mama until he was 4, and cannot form many sounds even now), and seeing his struggles we just could not “sign up” for a child with Cl/CP, although considered a “minor” need. It’s just NOT minor in my opinion, and significant language issues are heartbreaking, frustrating, and not easily overcome. I really respect you for your honest reflections. Your love for your daughter is obvious, and I know you will be at her side through this journey. Her victories will be sweet, and celebrated, I’m sure of that. But there will also be heartache and tears, and knowing that you find your strength in the Lord I know you’ll be okay!
    Thank you for sharing!
    Barb

  4. Susan permalink
    April 17, 2009 6:51 pm

    Hey Leslie,

    I would definitely recommend looking into some 1/2 day preschool options. I have worked with the preschool population (special needs) for years and we should give much credit to how children treat one another, particularly small children. In all of the classrooms where I have worked the children are patient and kind with one another, and that social piece is so important. Once lil miss in in therapy she could work some at school and some in private sessions, but her speech will definitely improve after the palate is closed–as some have already written. I am an SLP, and I can sense so much frustration in this post. Have some faith in the Lord’s ability to work through children, it is an amazing gift that children are born with (they get taught all the mean stuff, unfortunately). In the early years they are still tolerant and sweet and patient.–give it (a preschool) a try! :)

  5. April 17, 2009 1:39 pm

    Oh Leslie, I wish NY was not so far away. Sierra and I WOULD have playdates with you. There is a sesitivety in Sierra that is part of her and I know she would not be unkind. Thank you for your honesty. I am often struck when reading your posts how perfect a match God orchestrated for you and your family. I still believe that. You will provide Lil Miss with all the things she will need and her speech will come.
    Hugs to you from NY
    Kathie

  6. Karen K. permalink
    April 16, 2009 1:07 pm

    Hi Leslie,

    I am a lurker and have been following your blog since your trip to China. I appreciate your comments and feel the need to send encouragement!

    Our CL/CP 3rd degree daughter has been home for almost 2 years (she just tuned 4). We were surprised to find that they repaired her CL/CP in China (sometime between her 1st and 2nd birthday). All I can say, is that once her palate is repaired you should see a huge difference in Little Miss. Our daughter has been in speech therapy for about 6 months, but to tell you the truth I think time has made a huge difference. For the first 18 months she was home, no one except our immediate family could understand. People would look to me and say “what did she say?” It is annoying and painful sometimes, but she is improving every day!

    Finally, Little Miss is beautiful and strong – I am so amazed by her story! Thank you for sharing – Karen

  7. Stacy permalink
    April 15, 2009 8:27 pm

    Leslie – I am sorry that things are frustrating right now. You are not alone. Our NSN child has had me at my wits end this week with mysterious illness and attachment issues.

    I think that its important for most people considering adopting a child either NSN or SN from China or any other country, to know that all of these kids have special needs and always will. It may always be a struggle – so make sure you are not faint of heart, if possible, have a dependable partner with a strong resilient streak. You will both need every bit of tenacity, caring, perseverence, fight and stubbornness you have. China adoption was not the easy miraculous process we imagined. It has been a very hard, exhausting process but miraculous still. While we are challenged daily, we would not go backward, as we know for certain that we have made EVERY difference in the outcome of our girl’s life.

  8. Jennifer permalink
    April 15, 2009 8:06 pm

    Hi Leslie,
    I am so encouraged by your story and would love to talk to you more. Your family’s journey is particularly interesting to me because I am a speech therpaist- I see children w/ CL/CP and also currenlty have several “heart” babies on my caseload. You mentioned starting speech therapy in this post and wanted you to know that I would be willing to try and provide you w/ resources or any helpful information if you would like. Please feel free to contact me at anytime. Hang in there!

  9. April 15, 2009 10:02 am

    Thank you for sharing. We are awaiting our RA for our 8 month old daughter with cl/cp. Your post was not discouraging at all — thought provoking and challenging are better words. I appreciate your honesty. You have a beautiful family.

  10. Alicia permalink
    April 15, 2009 8:41 am

    Leslie,
    I am so sorry. I cannot even imagine how hard this last year has been. However, Li’l Miss is beautiful and precious in God’s sight. This all too soon will just be a distant memory. The rewards from having walked through this trial will be precious to you and Li’l Miss. Hang in there. God is sufficient and He is near to you!

  11. April 14, 2009 2:43 pm

    I have empathy for you and appreciate your honesty. While my child does not have a CL/CP she does have definite speech issues which are extremely frustating for her and for me. She came home at 34 months and by all accounts seems very smart but she has just so much trouble communicating. We have been seeing a Speech therapist for 8 months now so there has been some progress. She is still so far behind her peers it really separates her from them which makes me sad, just as you said. Last night she wanted what we thought was peaches. When we gave her peaches, things went crazy as that is not what she wanted. For 15 minutes she kept repeating herself, getting more and more upset. Finally, I realized that she wanted Princess Soup(Campbell’s). Once I had that out of the cabinet, all was fine, except we were exhausted by this routine challenge.

    My prayers go to you.

  12. Lois permalink
    April 14, 2009 2:22 pm

    I just wanted to say that I read your post on the AWAA website the other day. A big congrats to all of you!

  13. April 14, 2009 1:22 pm

    My little 3 y/o guy has been home almost 4 months. We just had his palate repaired (also very severe). He is an amazing, happy, sweet child with a super funny personalirty, BUT, the talking is an issue for us as well. He understands almost everything, but he doesn’t talk much except to babble. And, as you know, the hardest part is that when he is upset, the babbling turns into whining, screaming and crying. His English IS improving slowly but surely, but I can hardly wait for the day he can really speak well. Just wanted to let you know you are not alone. Tanya

  14. Becky permalink
    April 14, 2009 12:12 pm

    Leslie, I continue to learn so much by following your blog. I never thought about Little Miss being lonely. I felt like a good home, loving family and plenty of attention would be enough. And of course she has spent most of her life without those things. I’m encouraged by the other posts that after her palate surgery her speech will improve. I’m sure she wants to interact like everyone else around her. God bless you all.

  15. April 14, 2009 12:02 pm

    Thank you for being so honest in your postings! I love that about you & your blog. I hope to be that way after we travel to get our Sydney. Love the beach picture with the kids–priceless!

  16. April 14, 2009 11:39 am

    Parenting a child with SN’s can make you feel so isolated. I also lack interaction and playdates for my SN son and it hurts. He is delayed in speech and I have been teaching him LOTS of signs I use the signing time videos. I love them because they teach the sign and show the written word. There is also a special needs child starring on the videos (she is deaf) and a “typical” child stars also. My “typical” son watches the videos with us and he one day said hey that boy is just like me he, he takes care of Leah and I take care of Isaac. Just know that there is a season for everything in life; and just like real seasons this one will be changing soon. Good luck!

  17. Nathalie permalink
    April 14, 2009 8:16 am

    Hi Leslie
    I left you a long e-mail about speech on your e-mail address
    I would add that there is a benefit to start speech therapy now before the palate repair to get Lill Miss comfortable with that person and to have a relationship of comfort, confidence and fun before the hard work begins
    Nathalie

  18. Pam permalink
    April 14, 2009 7:31 am

    I just want to thank you for your very real post. Please know I am praying. I’m glad you shared your difficulties, because I think unless you’ve adopted CL/CP and know differently, I believe it’s a common perception that it’s an “easy” (corrctable) SN. I think people need to see what’s all involved. I have not had a child that is challenged with language, but I do understand how very frustrating that must be. I know the whining would get to me VERY quickly.

    I know you are now a homeschool mom, but I think you are wise to check out preschools for Lil Miss. I have an adoption friend whose first daughter from China has/ had language delays, though for a very different reason. She also planned to homeschool. She did end up putting her daughter in an early intervention program through the school (5 mornings a week) and her daughter has absolutely flourished and has made such tremendous progress.

    And just wanted to let you know, I can relate with the loneliness and feeling of isolation and lack of playdates. :) That’s been one of the hardest things I’ve experienced by adopting at an older age. (not saying that your older~ but that I am) :)

    And I LOVE the photo of the boys holding up LM at the beach. Soooo cute!

  19. Emily permalink
    April 14, 2009 12:13 am

    I don’t think a disclaimer is necessary at all! I think it is wonderful that you are so candid about your experiences. It is so refreshing to hear the ups and the downs of international adoption–with a special needs child. Those of us (like me) who are looking to your blog with the thoughts of adopting in the future need to hear it all–the good and the bad. So keep it up!

  20. April 13, 2009 11:58 pm

    If I lived closer I would come teach y’all to sign. But I sadly don’t so I am going to suggest trying the library for a few signing videos. There are several geared towards children and can be family fun. Also, are there any family or mommy and me groups geared toward adoption or cp in your area? If not, you might test the waters by posting about a meet up on craigslist. It might be helpful to have a group (even if its just ypu, Lil Miss and one other mommy/child combo) to meet in person at Starbucks once in a while. Just a few ideas. Y’all are such an inspiration and I love being able to follow along the ups and downs of your journey!!

  21. April 13, 2009 10:17 pm

    While Katie has good speech, and it seems her peers (those we’ve been around) accept her…it’s HARD to take her places like church because she struggles so hard with the attachment and the fears when we leave her. At 6 months home, we were still in a hard place – I was feeling so isolated from my friends, I was overwhelmed, and quite frankly I was a little “depressed” from trying to do too much and getting myself “overwhelmed.”

    I found out later that my friends had stayed away because they knew Katie was struggling and didn’t want to interfere and cause problems there. They knew I couldn’t easily go out for Girls Night and such because Katie would be fearful of me leaving her. Perhaps a few of your friends are thinking similarly? I know that if I were nearby I would love to do playdates, but would be wary given the doctor’s orders to keep her healthy. If/When I’m up your way for a “field trip” of sorts, I would love to have you all join us. Your kids are similar ages to my own kids.

  22. April 13, 2009 10:00 pm

    Leslie,
    I read your concerns about language and your daughter. I have adopted two NSN children from China (both ended up with SNs), and their ages were 10 months and 16 months at adoption. Both were very late to talk, and caused me much worry. I am a foreign language teacher and have read / studied extensively on second language acquisition. Your daughter has only been with you for 6 months… and a 6 month old baby would not be doing any more than what she is doing. She is probably still processing in Chinese somewhat, and she is frustrated just like you. (And no doubt she has the psychological development of a 3 year old, and that is tough with or without words!) BUT… she is a sponge (and no doubt quite smart!), and she WILL begin to talk. Consider her as a bi-lingual child for a while, and know that her brain processes are working through a LOT! Expose her to LOTS of English (children’s television programs, children’s songs) and make certain that it is not too fast or complicated. (Baby Einstein might be good for a while!) The language puzzle will come together quickly, and as she progresses you will be able to positively reinforce the good language while ignoring the whines and unpleasant sounds. Then you will be able to isolate issues that can be directly related to her CL/CP. Important language/sounds should be introduced through the “right ear” — unless there is a hearing issue, and try to read to hear from that side. (No doubt you have had her hearing checked…. both my daughters cannot hear low sounds, and it is probably directly related to their abandonments at such young ages. If your little one does have some hearing loss, try to avoid speaking in the tonal area that is challenged.)
    Good luck! She is dealing with a lot, (and so are you!) and God’s paintbrush has just begun on her canvas of life! It will be a verbal life and you are truly witnessing a miracle. Just be patient with your miracle, because language and verbal skills are accumulative and take time!
    May God’s Peace be yours this day!
    Lisa Bond
    And thank you for not closing your blog! I find myself praying daily for your little princess! And it is nice to see God’s hand in her life!

  23. April 13, 2009 9:24 pm

    Leslie,

    I could have written your words. Our son has been home over a year. Cl/cp is not an easy need – do I have regrets – nope, nada, none however, it is a struggle to talk. He came home at 17 months, palate repaired at 22 months and then another repair (1st surgery wasn’t totally successful) at 28 months (again he ripped the back of the palate). We might have another repair this summer followed by a nose job and more surgeries. I cringe when people think cl/cp is an easy need. I know each child is different.

    He will be 3 in September and he babbles like a baby. He has started the whine and to get everyone’s attention he favorite word is HEY.

    It is what it is. I get asked all the time is he talking, I say no, they say oh it is because he is a boy and boys are late talkers. Well that might be true but with Ricky it is more than that.

    When you are living it, it is very hard to see your child struggle. Ricky wants to talk, he tries. It just isn’t there yet. Ricky does go to a daycare facility and he wows them with his massive personality and sweetness.

    Our school system offers a special preschool for speech delayed children. We are getting tested in the next few weeks to see if he qualifies. I’m praying that he does otherwise we will be looking for a developmental preschool for him as well. I’m also trying to up my signing langauge skills – he soaks them up as well and probably is limited by my knowledge.

    hugs to you and sweet little girl.

  24. April 13, 2009 8:42 pm

    I can really identify with your post. I expected Kate’s speech to take a giant leap forward after her CP repair, but her progress has been extremely slow, and sometimes I am incredibly frustrated.

    I second what some people have said about going ahead and starting ST. Our speech therapist has been a great source of encouragement for both of us. At first she focused on building a relationship with Kate and teaching both of us sign (we also use the Signing Time videos). Now, we focus more on building muscles in her mouth and tongue – muscles that she really has never used until now. She teaches me specific ways that I can help my daughter- games we can play, etc. She is also an adult who gets what I am dealing with, which is important for my own sanity. Anyway, we are seeing progress, but it is slow. When I look back at the last week or month, it feels like she hasn’t made any progress, but when I look back over 6 months, I can’t believe how far she has come. So I have to look at the big picture.

    Hang in there. It is good that you are being honest with yourself (and others) about how hard it can be. I think I was really naive about the communication issues. I am in a positive frame of mind this week, but last week I was so discouraged. Know that you are not alone! Blessings, Amy

  25. April 13, 2009 8:33 pm

    I don’t have any advice to offer but just wanted to thank you for being willing to share so honestly. I think that folks considering SN adoptions need to go in with their eyes open and have folks who are willing to speak to both the joys and the realities of kids with special needs. I always appreciate what you have to share. You and Lil Miss will continue to be in my prayers.
    lauren

  26. April 13, 2009 7:57 pm

    Leslie, I understand your concern regarding school, but let me share this with you. When Jessica came home (she was 5) she went to pre-school to be evaluated 3 days a week. During the 6 or so weeks that she went her language skills JUMPED. It was amazing. Let me also share this with you…we are in the process of adopting a little boy (CL/CP)via interuption. He is 4 and has very little understandable vocabulary, it is frustrating to no end for me, I never imagined I would strugle so much with this BUT Jessica understands much more of what he says. Send little Miss to pre-school, she will encounter questions regarding her scars, and some about her speech and then, very likely, the kids will move on to being kids. Jessica is in kindergarten now, he speech is fantastic, and her classmates are just her classmates. I know your scared, but pray about it. I know your a GREAT Mommy and will make the right choice.

  27. Chris permalink
    April 13, 2009 7:56 pm

    We have not had to deal with any of the speech issues, thank you for the eye-opener. I have a niece that had only cp , but since she was born here it was repaired before 1yr. They had about 1-1/2 yr of speech. I was thinking CL/CP doesn’t sound so difficult (when choosing a SN) Thank you for opening my eyes. No, you were not discouraging

  28. April 13, 2009 6:12 pm

    I see nothing to be ashamed of. You love her, but you are very honest about the hardships. Two of my adopted daughters have spina bifida, and I could easily make some of the same statements. Our youngest is probably the sweetest child I have every met, but many times the challenges from her physical and (unbeknownst to us) mental issues are just plain frustrating. We enrolled her in preschool, and there are many developmental issues among this group of kids. This has been so good for her and so good for me too. First of all, just seeing the challenges that other people are dealing with has been helpful, but also, I get 2-1/2 hours X 4 days a week of time to get my own work done and just have quiet time. I very much appreciate your honesty.

  29. April 13, 2009 6:07 pm

    Don’t ever feel like expressing frustration is not ok. EVERY mother runs into something in their motherhood that they are frustrated with. I think sometimes I feel like I can’t state my frustration for fear “people” will say you wanted to adopt. The whole thing is we get frustrated with bio or adopted kids issues all the same! They are literally no different in my mind. I have worked in a classroom with kids that have challenges facing them for 4 years. Let me tell you if you have a classroom available to you go for it. I am AMAZED the amount of time it takes kids to soak things up. They truly are little sponges. If anything they can help with the signing until her sweet little words can be formed. Some will let you stay and interact with the classroom as well. God is good and he is just waiting for the right time to let her words flow, until then sign away. There are many videos out there go to your local school district and ask if they have anything. You do not have to attend there to get services that they offer, or even your local Easter Seals. I will add this to my prayer list.

  30. April 13, 2009 5:22 pm

    Thank you for your honest post!

    I know we dont’ know eachother, but I wish we lived close, my kids would play with S. My kids are 5 and 3, and my 5 year old daugher has a friend who is blind. I think kids should learn to be accepting of each others differences.

    I am so glad you shared your frustrations. I am still very interested in CL/Palate SN children, and instead of turning me away, you made me more interested. I know quite a bit of sign language and kept thinking lately that maybe God wanted us to adopt a SN Deaf or Hard of hearing kid. But maybe He really is preparing my heart for CL/Palate.

    We are still waiting on God’s timing, and thank you so much for sharing!

    -Sarah

  31. Kim O permalink
    April 13, 2009 5:12 pm

    Thank you for your honesty, that you really did not have to share with all. I’m sure it is hard to say all that you did, but it might help others making decisions.
    I would like to say, though, that maybe you should not hesitate to put her in nursery classes at church. What we did at our church was volunteered in the age class we felt that our daughter would probably be in when we adopted her. We did this while we were waiting for referal. #1 because I couldn’t take being in our SS class with all the young moms pregnant all the time and #2 to give us more experience with children.
    When our daughter did come home, she was able to attend SS each week because we were her teachers, along with another grandma who taught with us. She stayed in our class until she was finally walking-which took until age 18 months or so. Then she moved across the hall. I think being in there with her helped us with our anxiety of how she would get along. She was a few months older but still crawling and not very good at that. But being around those more her age did help her learn from others. Even at daycare/school we kept her with age appropriate peers. She might have been a couple months younger, but I didn’t let the age gap get too far. Such as if she was in the 18-24 month class, I would let her stay until about 26 months, but I wanted her moved up because how else would she learn age appropriateness without being near those that are closer to her age? When our daycare refused to move her up and moved a younger child up ahead of her, we ended up moving her to our church’s preschool, which was the best move ever. She was in a small group with adults that knew her and was filled with love, learning and the Lord. She has progressed, but she did have therapy too start off with . We had her in speech, PT and OT from the start. I would not wait on therapy. I’m a strong advocate for getting therapy as quickly as possible. She might have to relearn, but if she can learn as much as she can now, she will be less frustrated and possibly not scream as much! LOL
    Good luck!

  32. April 13, 2009 4:43 pm

    Hey Leslie,
    I just wanted to add that once the palate is repaired, her speech will start to improve greatly. Now at almost a year post surgery Charlotte’s speech is so much better. She tries to say everything and gets clearer all the time, but learning all the sounds needed to speak English is just plain hard. I did want to add a little plug though for starting speech now. We started in Feb. of last year, 1 month after the lip repair and 4 months before the palate repair. We mainly worked on signs and making sounds, ones that do not require the use of the palate. m’s, p’s, vowel sounds etc. The great thing was the Speech Therapist knew all of the signs, so I learned along with Charlotte. She could show me the sign for anything I needed. We even learned animals, which she loved to show when we read stories together. If you can find a Speech Therapist that is pro signing, I would consider starting sooner rather than later. It will also help Lil Miss have a relationship in place when she is ready to begin the hard work. I totally agree with you, about how much more is involved in Cleft lip and palate then we initially thought as well and we too have decided not to adopt a child with that need again. Just because it is surgery and therapy intensive, and two needing that would be hard. I know you guys will make the best decisions for Lil Miss but just keep in mind that these next 6 months are going to bring even more growth than the first 6 did. That is what happened for us anyway.

  33. April 13, 2009 4:24 pm

    Leslie,

    Though our daughter’s needs are so different from Lil’ Miss’s, I can so understand and empathize with the feelings of isolation and concerns that you have expressed. Home less than three months with a child that should be in kindergarten by age, we have been blessed to have found a preschool where she is doing well with people who love and encourage her. It is helping the social development as well as language.

    Church is still very difficult, and I understand your concerns. My husband or I must stay with her. I have watched other children laugh at her when she tried to pray so she could be like everyone else, “(Chinese) apple, banana, (Chinese).” They scoff at her when she writes her name in Chinese characters like she is scribbling. Or the day when kids avoided her because of her red eyes after surgery.

    International adoption of these special kids is a challenging path no matter what their need. But they are such a wonderful blessing! Our daughter is perfectly fit for our family. In all the preparation and education for bringing our daughter home, with all of the encouragement to have a support system in place, I was never prepared for how lonely this journey became once we got home. I am so thankful to you and others who I consider my “cyber-friends” for your support, encouragement, and honesty.

    As another commentor suggested, I would encourage you to investigate sign language tutoring options. A friend with a hearing impared child was able to enroll in a tutoring program for the entire family. The tutor came once a week to help the whole family learn more ASL. And though it is difficult, exploring options outside the home for Lil’ Miss may be beneficial. We too are looking into options for next fall with may include sending my “baby” to the public school for the ELL support she needs.

    Continuing to pray for your family,
    Lara

  34. April 13, 2009 4:22 pm

    I just want to say that as a parent of a special needs daughter, I understand. So often I wish people would see past the handicap and just see our sweet daughter. Megan is almost 22 and while she has Down Syndrome, she is very aware of how others see her or treat her. Unfortunately, most of the rejection has happened at church settings. She had better acceptance at the public school that she attended. But, while I wish my daughter was not handicapped, I also realize that it is part of who she is and part of what makes her special. And, in God’s eyes, she IS perfect! He sees her heart and her love for Him. He doesn’t hear the off-key voice singing, He hears her heart praising Him. Someday, I will rejoice as I watch her receive many rewards in Heaven; she serves the Lord and has such a strong desire to do whatever she can for Him!

    I have found that it helps to journal my feelings and experiences. Thank you for your honesty today. Your love for your daughter is very evident and from the pictures I can tell she is a beautiful little girl that God will greatly use!

  35. April 13, 2009 4:10 pm

    Thanks for keeping in real. It’s important that you can share both the joys and the frustrations. I put a very real raw post on my blog back in November (http://kenward.blogspot.com/2008/11/national-adoption-awareness-month-part_17.html) about our SN adoption and got nothing but support. I hope your adoptive community does that same for you. Just imagine what her palate and speech therapy will do for her!! You are a wonderful family. Hang in there, friend.

  36. ptison permalink
    April 13, 2009 3:49 pm

    I had similar thoughts at 6 months and did not have the cleft issue. I did however have a very intelligant 5 year old who was as frustrated as the rest of us because our communication was so limited. She too understood everything that was said to her early on but it took a long time before she could use it. She is also a perfectionist and would NOT use it until she had a good handle on it. She later told us that she did not want to sound “dumb”. After a few years of struggle and prayer she is now a member of the National Beta Club and a straight A high schooler. Not bad for a kid who was 5 and a half years old before she even heard English. Hang in there and watch for what God is going to do with your precious jewel!
    PJ

  37. April 13, 2009 3:31 pm

    I KNOW exactly how you feel about the language thing…….. Try telling people your child is FIVE and only says a few things! It’s hard, but the truth is progress is being made, it is just alot slower than I would like. It is the SINGLE most frustrating thing I have dealt with. I have quit answering people when they ask questions or have comments. It’s just easier, why do I have to explain everything to everyone? AND Em hears it everytime. Truth is I am proud of how far she has come and though the SN is different we are dealing with alot of the same things :)

  38. April 13, 2009 1:33 pm

    Hi Leslie,
    I have posted before on your site. I love your blog and your ability to be so honest with your feelings. I just want you to know that I would love to have an invitation to your blog! I am very inspired by you as a mother and a person!!! I just want you to know we adopted our Sophia who had cl/cp. We have had a completely different experience than you have had with Lil Miss. She was 22 months old when she had her palate surgery! We started speech thearpy a month before her surgery through our county early intervention program. Sophia has received speech therapy since last July and her speech is now age appropriate. We also are now receiving speech therapy at the hospital once a week and that therapist also said her speech is age appropriate. Once the palate surgery is over, you will see an immediate change. Please e-mail me and I can share some more of our experiences.
    Tricia

  39. April 13, 2009 12:44 pm

    Leslie, I just did almost word for word a post about Lia and this very matter! Our girls are so much a like in their struggles. I would recommend trying to find a sign language class or even a tutor that could work with all of you. That is what we are going to do but for two reasons. One for Lia and the other for Evan. Like Li’l Miss Lia will pick up a sign in a matter of seconds. Just show it to her and she tucks it away for later use.

    Lia’s reason for not speaking is different than Li’l Miss but they still struggle. Yes the questions become old. I get tired of explaining what happened or what is wrong. Or the looks of sympathy we get when I do tell them what happened.

    Hang in there. I know there are days that are not easy, believe me I know. I don’t know whether Lia will ever fully carry on a verbal conversation and I grieve from time to time not knowing. It is hard.

    Praying that once Li’l Miss starts ST all will fall into place. The Lord will give you enough strength to get you through those tough days. When you feel you don’t have enough strength then that’s when you come to your friends and let it out. :)

  40. Susan Allman permalink
    April 13, 2009 12:15 pm

    I could say the same about attachment disorder. It is such a challenge and people just don’t understand. Rissy and I stayed home from Easter celebrations because she was having a meltdown and I was having to teach her a lesson. She has to learn how to handle herself. I love my daughter dearly and I do what is best for her whether someone else understands or not. It’s not their life or decision.

    Susan

  41. April 13, 2009 11:25 am

    Don’t feel bad about your feelings on the communication issues you are enduring. My husband and I had similar feelings around the 6 month mark. My son is bil cl/cp 3rd degree (all repaired now) and we were surprised by how difficult the communication issues were for us. We did use sign language and continued to expand on it. Once he was able to use the word for the sign he dropped the sign usage. He had “meltdowns” all the time and it was just his frustration in not being able to communicate with us. His lip was repaired in China and we had his palate repaired 2 months after being home. It took 6 months before he said one word. He has been home 2 years (come June) and his speech improves everyday. His speech is still around an early 3 or late 2 year old (he turns 4 next month) but we have communication so we are okay with a delay. Just keep loving, reinforcing good behavior, and be consistent with the discipline when needed. She’ll make a turn probably pretty quickly after the palate is repaired. I hope this is encouraging.

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