Our desire to grow our family started with us filling out a very open MCC list. As we reviewed the files of a couple of precious kiddos, we were able to learn more about ourselves and how we could best meet the needs of a child we were to parent. Having an actual child’s file with real needs was able to push our thinking beyond what filling out a check box and reading a summary of medical conditions was able to do. We were able to visualize how our gifts, strengths, and challenges fit with a particular need and how our daily lives would need to be modified to accommodate a child so the child could thrive. This introspective process caused us to do some MCC updates! We removed several conditions and added others!
Harrison, currently 33 months old at the time, had a medical file listing conclusions and suggestions as a child with delayed motion, language and intelligence development, developmental delay of brain (or some places indicated poor brain development). What did that even mean? That sounds so scary? Where do you start on evaluating his needs? We took a deep breath and began to focus less on the diagnosis and more on the available information and on his physical condition and needs.
We utilized the International Adoption Clinic at Cincinnati Children’s hospital to evaluate medical files. We found using professionals in adoption medicine that have access to experts in all types of medical specialties to be invaluable in navigation and assessment of a child’s medical needs. There were some inconsistencies in his file and the findings. The file indicated he was premature; however he was over 8 pounds at birth. The file indicated he had just learned to walk; yet, the doctors reviewing indicated the child in the video was much more adept and confident with his walking skills than a child that had only learned a month or so.
His file evaluation of motor skills, adaptability, and language and social skills showed some delays but were very encouraging.
The most difficult part of adopting a child with a known medical condition is the Internet! (And the uncertainty of really any “knowns”). Until we had Harrison in our arms and our sight for our own observations and had his physical evaluations with medical professionals; our minds would go wild with the “what ifs” and “if thens”. I spent so many nights, before our travel, developing my own internet based treatment plans for my sweet boy. A “googling” parent is a dangerous thing. I have found that the unknowns are much more difficult for me than the “knowns”.
What we did to address his medical needs:
We worked with the International Adoption Clinic after the initial evaluation to develop a course of action for once we returned home from China. Prior to travel, I contacted our local pediatrician and a Neurodevelopmental Pediatrician at Duke Medical Center to set up appointments.
Harrison was timid and fearful on Gotcha Day but generally content with snacks and my husband or I carrying him. Immediately, we noticed his core strength was weak and he had difficultly navigating any uneven walking surface (slight incline, crack in the side walk, curb, threshold, etc.). When we bathed him later than day, he noticeably lacked core strength and seemed very frail and weak.
He was falling down very frequently throughout the day. He wasn’t yet able to run, skip, or jump. He was constantly falling down. Everywhere, he was falling down all the time. Was this a gross motor skill deficit or delay, neurological, nutritional deficit, what was going on? However, every day he was stronger and acquiring new skills, every minute of every day.
We adopted our daughter Olivia at the same time (they are 2 months apart in age) so we did have some comparison. However, she was living in a foster family for the last two years and he was living in the orphanage. She was noticeable stronger and more confident as well as much more vocal and verbal. We knew she was speaking Mandarin; but, we didn’t know exactly what she was saying! According to his file, Harrison only spoke a word or two in Mandarin. Were these delays due to institutional living, were they deficits due to “poor brain development”, intelligence? We didn’t know. We tried to not compare the two and let them develop and grow as individuals in their own time. That is definitely easier said than done.
Harrison was stronger and more confident with each passing day. His language began increasing quite literally day one in China. He was repeating words, approximating syllables. He was running within a few weeks and within a month this timid, fearful child was jumping! And so happy to be jumping! This accomplishment may have been one of the times I have seen him the most proud of himself. He is still thrilled to have others watch him jump! Jump Harrison Jump!
Neurodevelopmental evaluations lead to no immediate concerns. He is inquisitive, bright, learns easily and is curious about the world around him. He is very typical in his cognitive development and skill acquisition. His gross motor skills and fine motor skills had caught up significantly and drastically in our few months as a family. As suspected, we should evaluate his speech. A Mandarin interpreter was brought in to assist in the evaluation conducted at Duke Medical Center (six months home from China). The evaluation determined he was acquiring the English language and had only two sounds that exist in Mandarin and English that he should have mastered but had not. His receptive language skills were very strong. Speech Therapy was not recommended at that time. The recommendation was to re-evaluate after 12 months. We are currently approaching that. He may need some therapy to assist with his pronunciation of some sounds. He is saying multiple word phrases and is attempting syllable approximation with words and phrases. I understand probably 90% of what he tells us. If you know him well you probably can interpret 60% or so of what he talking about. Harrison LOVES to talk. He gets lots of practice with the “talkers” at our house!
He loves to SING even more! He doesn’t sing particularly on key. But, neither do I really. He sounds beautiful to me and makes everyone around him happy! A good day always includes singing and a dance party.
This sounds so simple and easy as I review my writing. The truth is there were many appointments over many months. We have also been referred to a Pediatric Geneticist to have some precautionary testing; however, this is a 12-18 month wait for an appointment. We are still waiting.
The “good and the bad’ of having a somewhat ambiguous diagnosis is trying to prepare and educate yourself on the possibilities. It’s good to have somewhere to start; but the name or characteristics of a condition are just that. It’s not the whole of your child. It’s the problem, not the possibility.
Every child is more than a few words on a page describing a condition.
Harrison has gone from a timed, shy, fearful, frail child to a giggly affectionate little boy who loves life and is rambunctious and feisty. He is playful and loving and can’t get enough hugs and kisses from mom! This took time. Early on he didn’t really know how to show affection. He has definitely decided that hugs, kisses, and snuggles are the way to go and if he could stay physically attached to mom twenty-four hours a day he would do just that! I have been so thankful for this bonding. However, when you are bonding with another child adopted at the same time and actually need to shower once in while (which Harrison also just decides he will shower with me if given the choice); this level of attachment can be challenging. I have learned to wash my hair with one hand and hold him with the other. This little lovebug has a lot of time to make up for and I don’t want him to miss any more minutes of feeling the affection of someone who loves him I will take that kind of challenge any day!
I would encourage another family considering a child with poor brain development or delayed development to:
- Understand yourself, your spouse, and your family’s strengths, goals, capabilities and limitations (physical, emotional, financial, proximity to resources, etc.).
- Enlist the opinions of professionals in the field that can assist you with understanding the medical facts and developmental conditions of the child you are considering.
- Understand the highest level of support that may be necessary given the information you are provided.
- Determine if that level of support for the most conservative development outcome is in line with your family’s attributes and abilities.
- Imagine the child’s possibilities.
- Celebrate the successes. The little ones, the big ones. Every milestone is important!
Were we just extremely fortunate or lucky? Perhaps. People are constantly shocked that either of our adopted children were in a special needs or medical category.
We are definitely blessed. We did prepare for the problems that could exist…but we focused more on Harrison’s possibilities.
Happy 4th Birthday Harrison!
The journey begins with what is called “The Paper Chase” this is where we compile a small mountain of paperwork. Have it notarized, certified, and authenticated. When this is done the dossier is then sent to China and we begin the “Wait”.
March 1999 – We have made the decision to adopt a baby from China with CCAI! When we checked into adoption a few years ago, we found that we just couldn’t afford it at the time. We had given up hope of adopting. Maybe God just wasn’t ready for us to adopt. Like many, we were not looking to adopt when He was ready. We went to the local Family Expo put on by a local Christian radio station on the 14th of this month. There was a booth there that I originally thought was a Photo Studio. Since it had been a while since we had a family portrait taken, I went over to sign us up. Little did I know that I had just changed our lives. It was the Chinese Children Adoption International booth. I knew in my heart, as we talked to some very nice people, that this was the answer to our prayers. We have just finished our application and need to get it sent. We are also working on our INS form.March 22-30, 1999 – We took the family to Disney for Spring Break. Jeff had to go to Orlando for work, so our daughter, Cassie, and I decided that it would be fun to go. Jeff took a few days vacation. We all had a blast. I kept finding myself drawn into China at Epcot. What a wonderful place. I felt closer to our little one, so far away. Jeff’s conference was held the first 2 days, so Cassie and I stayed at the hotel and thought of names for her new sister. We came up with Victoria Jorene (Jorene after my mom.) When Cassie told her Dad, he agreed that it was a great name.
May 8, 1999 – We had our orentation class today on preparing our documents. We were able to hand in about half of the documents already: all of the ones for the INS. We have a few that will be going to China that we need to fax to our agency to get the O.K. on their wording, then we can send them to the Secretary of State for Certification. Then, when the INS sends us our final paper (the I-171H,) we will get all of the documents sent to the China Consulate. Our first Home Study appointment is May 23. We met our Social
Worker. She is very nice and we look forward to working with her. Today was the first time I was told “Congratulations, you are going to be a mommy again.” It was so wonderful, I cried a little on the way home. It is finally happening.
Aug. 18, 1999 – We received our Dossier from Carrie with Special Deliveries today we took it up to CCAI this afternoon. We were told that we would make the September DTC (Dossier To China). So in about six months we will be getting our match and see what our new baby will look like!!!! I can’t believe that we are finally done with the paper chase!!!!
Welcome to the portion of our adoption that is fondly called “The Wait”. This is the longest part of the adoption process and is the hardest part for most people. We have basically done everything we can do and our Dossier has been sent to China. Now we wait for the Chinese Government to match us to our daughter.
Oct. 5, 1999 – We received a letter from CCAI that we have a DIC date of September 21, 1999. That is when our Dossier was logged into China and we are officially in the waiting line. Our agency is one of the only agencies that tells you when your dossier is logged in the CCAA. We are so excited.
May 23, 2000 – At 10:38 am we received the call from CCAI. We have a wonderful almost 8 month old baby girl waiting for us in the Jiangxi province in China!!!!!! Her name is Jiang Yong Yuan and the characters translate to “Forever Together”!!! We finally have a picture of Victoria Jorene!!!!!!!June 5, 2000 – Travel notices are in for the April groups. We maybe hearing soon when we will be going. I can’t believe how fast time is going. I am having so much fun shopping and getting things to pack. COME ON TIME JUST KEEP MOVING ON!!!!
June 12, 2000 – I mailed our little ones care package to day. Just thinking about her holding her toys and blanket makes me tear up. I just love that little face so much!!!
June 27, 2000 – We received more pictures of Vickie today. We are so blessed to have such a caring orphanage to be sending use pictures and a letter telling us about our wonderful new daughter. I just can’t wait to go get her and finally be able to hold and cuddle her.
We are finally getting closer to travel. We hope to get our travel papers very soon!!!!
July 5, 2000 – I talked to CCAI and the Travel Notices haven’t came yet they will be checking to see where they are!
July 12, 2000 – We found out the delay in our travel is because our acceptance letters were lost on someone’s desk for two weeks. I don’t know if they will give Vickie to someone else or not!!!! I am so scared.
July 13, 2000 – We received an update from Thomas at CCAI for Vickie she is still ours!!! I am so happy!! She is just going into 6-9 month clothes they sent us her schedule and her likes and dislikes! They also said that she has a strong will and doesn’t like strangers. I think we will have a fun time the first few days in China.
July 19, 2000 – CCAI received some travel notices today not ours but for the ones ahead of us. Soon I hope we will receive ours.
July 21, 2000 – On the CCAI web page they say that our travel notices will be mailed on Monday!!
July 25, 2000 – CCAI notifies us that our travel notices were mailed last Friday the 21st. Wahoo!!!! We are finally closer. CCAI says that we may have a shorter time from receipt of travel notices to travel but I don’t care!!
August 4, 2000 – Our Travel Notices are here!!!!! We should hear something soon about our exact travel dates!!!!
August 9, 2000 – Wahoo !!! We leave next week!!!!! Our travel dates are from the 16th through the 1st of Sept. We are coming Vickie Jo!!! We started out on Wednesday, August 16 with a flight to LA. We stayed at the Ramada hotel and enjoyed taking showers and eating drinks with ice in them. Because we knew that we wouldn’t be able to once we were in China. We met some of our travel group that was also staying at the same
hotel. These people who were strangers would soon become family.
August 17-18, 2000 – The next morning we started meeting up with parts of our group. We were all very excited and nervous. We met the Sagely family when they arrived, leaving our luggage with the rest of our group in the international lounge. We took quite a bit of it with eight families. There were a total of 19 of us in group 213. Our flight left for Hong Kong at 2:45 PM on Thursday. For most of the flight Jeff and I stayed awake! Since we had the last rows in plane we were able to stand and walk around. Cassie tried to stay awake but went to sleep about 6 hours into the flight. We were able to look out the window flying over Alaska and saw some icebergs. During the flight, we had a great time getting to know our travel mates. We arrived in Hong Kong at 8:45 p.m. on Friday night and were met by Matthew who got us to the Shangri-La Hotel. Wow, what a place! It was so beautiful. We all were so tired that most of us didn’t realize how truly beautiful it was until the next day.
August 19, 2000 – After breakfast, we took a walking tour on our own along the bay, then meet back at the hotel with Matthew to tour Hong Kong. We went to the top of Victoria peak and saw many wonderful things along the way. We were all amazed at the cemetery, and at the fact that burial sites in China are only purchased for a temporary burial. We also loved seeing all of the Chinese children. But we were just getting a taste of China traffic! We also learned a lot about the Chinese traditions!
August 20, 2000 – In the morning Joanna met us and she helped us get to the airport on time. She also taught us some Chinese that our daughters would know like Hello, Thank you, I love you, Mama, Daddy, Grandma, Grandpa for both sets and Aunt and Uncle. We had so much fun that the bus ride was over before it began. We left at 12:45 p.m. for Nanchang! We were all so excited we would get the babies today! James met us at the airport and got us safely to the Jinfeng Hotel. I have never seen such traffic in my life. James said that he would call us when the babies arrived. At 2:30 some of the babies arrived but we were told when we arrived at James’ room that the Yongxiu babies would be arriving later. We were so happy for the others in our group, but a little sad that we had to wait. It was wonderful to watch our friends become families with their new little ones.
We received the call at 5:00 PM that Vickie was here!!! We rushed down to James’ room, with all of the families either all coming back or sending someone to take pictures. Michelle and Tony’s oldest son, Brandon, took pictures for us. We were the second of the three families to get our daughter and I couldn’t believe when they handed her to me. The minute she realized her nanny had disappeared she let us all know that she wasn’t happy! We received wonderful gifts from the orphanage (clay pottery, red bag of dirt from the orphanage grounds, and her story written in Chinese on a red handkerchief.) We went back to our room to change her clothes and put her in her first diaper! This was fun for us, but she didn’t like the diaper at all. She let us feed her an 8 ounce bottle of formula, and finally cried herself to sleep at about 8:00 PM. We called her Grammy and Grandpa to let them know she had arrived. She is so wonderful!
Fast forward to today!
May 27, 2017 – Today Victoria walks the stage at High School, I can’t believe the amazing young woman she has turned into. I am so proud of her, and all that she has accomplished. She will soon leave for a college visit trips in California. Thank you CCAI for making our lives so full and complete!
I began my journey to adopt my second daughter Scarlett, from China in 2013. My first daughter was adopted from China in 2011 through the non special needs program. I began to fill out the medical conditions check list researching each condition before checking it. I decided brain damage and/or delayed development was something I was open to considering. I felt most children institutionalized would experience some level of delays. The condition brain damage and developmental delays seemed to be such a broad generalization.
I received a call from CCAI and learned they had the file for a little girl for me to review. I was so excited! Yes it did seem Scarlett was behind developmentally. I did not feel she was so far behind she could not catch up but, I was open to the possibility. Scarlett was born premature and had only weighed 3 pounds 4 ounces at birth. I felt despite her tiny beginnings she was doing excellent.
I used the time between match and bringing Scarlett home to seek out resources that I may need to help her reach her full potential. I located physical therapist, pediatric neurologist, speech therapist, and resources through the local school system to help assess her development.
Soon after meeting Scarlett in China I had no concerns about her development. She seemed to be a typical happy healthy two year old. Today at age 5 she is on target developmentally and will begin Kindergarten next Fall. Other than speech therapy for speech apraxia Scarlett has not needed any special medical treatment or care.
I was so happy with daughters I decided in 2015 to fill out yet another medical conditions check list with CCAI. Again I marked brain damage and developmental delays on my medical conditions checklist. I was matched with my beautiful Priscilla. Priscilla has been home just over one year. Priscilla has not required any special medical care. She even seems to be advanced developmentally for her age. In just over a year she has learned English, how to count to 10, and most of the alphabet just to name a few things.
I feel that children are very resilient, and given the proper environment many developmental delays are corrected. I feel that brain damage/ developmental delay is a condition that may required little to no medical care. I believe with time patience and love some developmental delays can be corrected. I am so happy I was open to the condition brain damage and developmental delays.
#WelcomeHomeWednesday We are so happy to welcome home these amazing families!! Congratulations Groups 2428 & 2429! Five more children have found their forever family!
Happy Monday! We are kicking off June and #MedicalMonday with the Christofferson Family. This month we will be discussing brain damage and delays.
“We began our journey to Genevieve in July of 2015. We have two sons whom have Down syndrome, so developmental delays or brain damage is something we are not afraid of. During my day job, I work in the neurology realm and I understand that “young brain” is capable of amazing things! In my opinion and experience, if you give the child the environment, tools, resources, patience, and love to succeed they rise to meet the occasion.
Going into the situation you need to be aware that the file will most likely not be indicative of the child’s true potential, but it is best to be prepared for everything. Find out what resources are available in your area for pediatric needs like physical therapy, occupational therapy, and speech therapy. Be sure you have a pediatrician on board that is well versed with children with special needs. Having the right medical providers in place will help shine a light on the right path you need to take with your child once they are home. Meet with the school to familiarize yourself with the Individualized Education Plan (IEP) process. Once home if all of those services are not needed you have at least laid the right foundation in preparation for anything.
Once we arrived home with Genevieve we have had to secure none of those services. Her speech is delayed somewhat, but we are not sure yet what is learning English as a second language and what is a true delay. She loves school, and learns things very quickly. She does receive some speech services at her preschool, but we have not initiated an IEP. Her biggest need was more to do with love, patience, and trust development.
Genevieve is an absolutely amazing 4 year old that lights up every room she walks into. She is sweet and loving and determined. We are so honored to be her family.”
On May 23, 2017, CCAI co-founders Lily Nie and Joshua Zhong had the pleasure of attending a beautiful evening at Children’s Hospital Colorado in celebration of the investiture of the Meg F. Rady and Family Chair in Congenital Cardiac Surgery, Paul and Katy Rady’s generous gift to fund an endowed chair held by long-time friend and Board Member of CCAI, pediatric heart surgeon, Max Mitchell.
The Rady Family has adopted four beautiful girls through CCAI and are also dear friends. Meg Rady is their youngest and was the star of the night, along with Max Mitchell!
Dr. Max Mitchell has performed countless life-saving surgeries for children in need and traveled with his team to China in March 2001, 2002, and 2003 with CCAI’s first Medical Missions to perform vital surgeries for the children of CCAI’s inaugural Lily Orphan Care Center in Hangzhou, China.
“For the last nearly-two decades, Dr. Mitchell has supported and guided hundreds of CCAI families in making trusted and educated medical decisions for their children, before and after adoption. It was an absolute joy to see our great friend honored with such a wonderful gift from the Rady Family.,” said Joshua and Lily.
Congratulations, Dr. Max Mitchell!
Although cleft lip and palate is a medical condition that requires providing your child with extra help and support. It is a very manageable condition and the ability to help a child with this health need is something that many professionals are trained to do. If you are willing to put extra effort into your child this is something that can be easily taken care of and your child’s life will tremendously change. The most difficult part of having a child with a known medical condition is managing trips to the doctor. Initially it seems overwhelming- and it is. However, it is sooooo worth it.
Our son has been evaluated by a speech pathologist at our local school district. We are currently moving to a larger city to provide our children with the resources our family needs. Being closer to good medical care was a major concern. This summer Jai will be evaluated by several doctors and will begin the process of reevaluating his condition and receiving the treatment he needs. This is most likely another surgery to repair his palate, some plastic surgery on his lips, and eventually braces.
The good of this condition is that is can be fixed! Most cleft lip and palate surgeries can repair a person’s physical issues and therapy, etc. can help improve speech or other needs. It just takes time and commitment also, a willingness to place their needs above your own. The bad is that it can be a process and will take some time. However, it’s worth it!!!
Jai has done very well. He initially had trouble with culture shock. Food was very difficult for him and his lack of ability to speak English. However, he eventually began trying new foods and now is willing to eat much more than Ramen noodles! He has also started to pick up on English and is able to understand most of what people say to him. He still has difficulty responding, but that is to be expected.
Do it! A child with special needs in general needs a loving family that is willing to put extra time and effort into helping them. What a gift you can give to someone else and the joy that they will bring to your family is unimaginable.
When I was eight-years-old I saw a news program talking about little girls left on the side of the road in China, abandon. I knew at that young age that adoption would be part of my life.
Fast forward to marriage and three biological children by the time I was 29. My husband and I both felt like adoption was for our family we just were uncertain how. We started down the foster/adopt road. We were placed with a seven-year-old boy in 2012 when our biological children were 8,7 and 5 but that did not work out as we had intended. We found ourselves questioning, “was adoption really for us? Or are we just supposed to advocate for children and help others adopt?” After months of prayer we decided adoption was in fact for our family and we started down the path of adopting a special-needs little girl from China. My husband reminded me after we started the process with China that we in line with what God had initially placed on my heart as an eight-year-old girl. We knew many families in our area who had adopted special needs children from China as well and we leaned on them for support and guidance.
I was excited, the doer of all the paperwork, and anticipating our little girl. My husband was a little bit more hesitant, but trusting that the Lord had it all planned out because He had called our family to this. It took 20 months from the start of paperwork to being in China receiving our daughter. We took our three biological children with us on the trip to China. They were 11, 9 and 7 at the time. It was important to us that our older children see just where her little sister came from. We wanted them to see for themselves that not everyone lives like us. We have it so easy. We hoped that the experience would expand their worldview. Well, the Lord did just that. Part way through our 16 day trip they were ready to adopt again. I, personally, always wanted to adopt more than one child because I didn’t want our new daughter to feel like an outsider in a family with 3 biological children.
Three months after returning home with our daughter I saw a little boys picture on the CCAI Facebook page. His file was being returned soon. The Lord spoke clearly to me to inquire about him. I could not see him staying in an orphanage or going back to the Shared List. He had just turned 3 when I saw his picture. We were in China 11 months later to adopt him.
Both of our adopted children have limb difference, which we often forget about. They are amazing! I’m so thankful that we get to see them becoming who the Lord created them to be more and more each day.
Adoption is amazing…and hard!
I have learned more about myself through our adoptions than expected. I encourage prospective and adoptive families to remember what your (or future) adopted child is coming from. Really let it sink into you the feelings of loss, abandonment, loneliness, hunger, fear and much more that your child may have experienced. I am saddened by the times I let that reality slip my mind and expect too much of my children. Don’t get me wrong, I expect a lot of them in the areas of reaching their potential, overcoming things like learned helplessness and laziness but don’t want to forget that they might need extra time to snuggle, be talked to, listened to or their need for encouragement to reassure them of love. Even though love and attachment takes time to grow we can show love to our children in the process.
The Early Days
While living abroad in Hong Kong in 2004, I knew that adoption was in my future but my husband was not yet on board. In 2006, we began our formal adoption journey. Like so many other families at that time, we requested a little girl with “no known medical conditions”. Why? As first time parents, it simply was not on our radar to consider a special need OR a boy. As the wait continued to increase and our frustration level grew, we began considering other options. In June of 2009 a series of events opened our eyes and hearts to boys in the waiting child program. After doing our research we took the leap of faith and switched to the waiting child program. That was the best decision we ever made.
Fast-forward to April 2010. We met our son for the first time. He was so gentle and truly amazing. Although we thought we were well versed in cleft parenting (thank you Google), we had only scratched the surface. Tyler had a 3rd degree unrepaired, unilateral cleft lip on palate. That sounds scary, right? The first year home consisted of 2 major surgeries, lots of doctor appointments, therapies and more. His cleft lip and ear tube surgeries occurred right away. Speech therapy and occupational therapy began shortly thereafter. Six months later he had his cleft palate repaired. Within the first seven months home, we had all been through a lot. During this time, our scared little guy had transformed into a curious, playful, happy little boy who was full of life. He learned basic sign language very quickly and found that he could get his needs met by signing.
During all this craziness, we began the adoption process again for Tyler’s sibling. We had no doubt this time – we were open to boys with cleft and many other special needs. In 2011 we met our newest family member, Connor. He also had a unilateral cleft lip and palate. This time we knew the drill – scheduling appointments with the cleft clinic, with speech therapy and all the other doctors and specialists. We worked hard to get the initial surgeries done so we could begin functioning as a new family of four. We spent the next several years going to therapies – speech, OT and family integration. It was not easy working all these appointments into daily life, but it proved to be very beneficial.
It was an interesting time as the boys learned to be brothers. There was a lot of jealousy and fighting in the early days. This also brought out many tough feelings and struggles for Tyler. We learned very quickly what it meant to parent a trauma kiddo. We are still learning as the face of trauma changes over time.
Our Life Today
Things have really settled down in our world. We still attend speech therapy and probably will for many more years. It is just part of our life but it’s become a smaller part. The boys have gained tremendous confidence and continue to improve their verbal communication everyday. We see the Cleft Team at Children’s Hospital annually and we are gearing up for the next round of cleft-related procedures (palate expander, braces and bone graft). We are happy to be part of a local cleft support group in our area. This will become increasingly more valuable as the boys understand their cleft condition more thoroughly.
While the boys are less than 100% intelligible (ability of the average person to understand them), they continue to improve through focused speech therapy (via an IEP) and through continuous practice. Both boys landed a spot in their class play. That alone is a huge honor and achievement. We’ve been very fortunate to have wonderful and supportive teachers who encourage the boys on all fronts.
We also see a family therapy to help with life, in general. The boys both struggle with attachment and anxiety in their own ways. We need the support of a trained therapist to help teach us how to best navigate the waters. Everyday we see progress, but it’s slow. We’ve had to lower our expectations on this front.
Life is still GREAT despite these challenges. The boys are doing well in school and have adapted quite well socially. They also both love sports – all sports too. Most days they are best buddies and they share a deep and intense bond. They are deeply vested in each other’s life and take of each other always. Life gets better everyday and the cleft- aspect has become a minor hiccup in life.
Here are some pictures and videos that sum up our life today:
My advice to potential adoptive parents thinking about CL/CP – educate, connect, prepare and enjoy. Do your research and understand what is involved in raising a cleft kiddo. Be honest with yourself about the condition. They are many great resources out there. My personal favorite is: www.cleftline.org. Also contact a local cleft team and discuss this condition with them. Ask about surgeries, timelines and syndromes. Talk to other CCAI families with cleft kiddos. I cannot stress this enough. We met with a couple of families in advance and took the fear away.
Some days have been tough, especially around surgeries, recoveries and therapies, but it’s been worth every minute. Please reach out to me if you’d like to learn more about our journey or if you have any specific questions. You can reach me at email@example.com.
Educate & Connect:
- Discuss this need with your social worker
- Ask CCAI for a list of reference families
- Conduct reference calls, emails or meetings
- Research the special needs conditions that you are considering
- Be HONEST with yourself on which needs you are OK with accepting
- Gain a basic understanding of surgical requirements and recovery period
- Verify your insurance coverage
- Understand additional therapies (i.e. speech, occupational, PT)
- Gain family support
- Submit your Waiting Child form with confidence J
- Wait, Wait, Wait but continue to educate (IEP’s, Early Intervention programs, join CL/CP communities including on Facebook, met with a cleft team, etc.)
Prepare & Enjoy:
- Schedule initial visit at a Cleft Clinic as soon as possible
- Expect to see several specialists during this visit (ENT, surgeon, pediatrician, dentist, occupational & speech therapist, geneticist, audiologist, etc.
- Do not let the information overwhelm you – take it in stride. Schedule surgeries when ALL of you are ready. Consider the importance of bonding prior to jumping into a major surgery. Delaying this surgery a few extra months is not that big of a deal compared to the surgical trauma it could cause.
- Consider combining it with other surgeries (i.e. ear tubes) if required
- The surgeries are long, prepare to stay overnight
- At home, you are the NURSE – be ready for it
- Get creative while on the liquid or soft food diet – anything can be blended or pureed even mac & cheese (I have many “recipes” to share)
- Wear the arm restraints and listen to the doctors
- Schedule annual cleft visits to ensure progress
- Schedule various doctor’s appointments as needed
- Get the recommended lab work drawn
- Consider making an appointment at the International Adoption Clinic
- Schedule a developmental assessment with the Early Intervention organization in your area (depending on the age of your kiddo). Most cleft kiddos qualify for speech therapy (in home until age 3 and at school after age 3)
- Begin speech therapy (state-funded &/or private).
- Become an advocate and teacher to your child – you are their speech therapist, learn the ropes
- Watch “Baby Signing Times” (or similar) videos with your kids – helps to ease frustration and can aid in language development (it did for us)
- Focus on attachment with your child
- Leverage your village and resource when it gets stressful
- Ensure self-care
- Enjoy every moment
- Build your kiddos library
Here is a great list of cleft book and videos for children: Cleft Books & Videos for Children