Fistula Repair and P-Flap 6-Month Post-Op

Matteo had his six-month post-op visit to check up his recovery from his fistula repair and p-flap surgery back in February. Despite how well his mouth has recovered, he did develop a fistula, or in layman's terms, he developed a hole. The hole appears small, but the surgeon can't tell how deep it goes. The good news is that the surgery appears to have been a success given that the fistula is not impacting Matteo's speech and his p-flap closes off properly to prevent air from going through his nose, which gives him the ability to pronounce a broader range of sounds. At this time, we don't think he'll need another surgery to do a revision to the p-flap, which means his next surgery won't be until he's somewhere between seven and 11 years old when he'll have a bone graft.

The bad news is that despite Matteo's incredible work ethic during speech therapy, his repaired and lengthened palate, his age (he's turning four soon) and being home for a year and a half now, his speech is still nearly impossible to understand. And when I say impossible, I mean that I as his mom have extreme difficulty in figuring out what he's saying. It's heart-breaking to hear him repeat a word over and over again with such persistence and helplessly can't understand him.  

The doctors told me what I already know, that he has a severe articulation disorder. Of the 44 phonemes (the smallest units of sound that distinguish one word from another) in American English, Matteo can only pronounce nine according to his speech therapist's evaluation. His speech includes multiple phonological errors, such as phoneme omissions ("poon" for "spoon"), syllable reduction ("jamas" instead of "pajamas") and difficulty sequencing phonemes in single words. Just like Kiera, Matteo doesn't readily initiate verbally and communicates in one- to three-word phrases at most. 

Aside from identifying that Matteo has a "severe articulation disorder", they can't do further testing on his expressive language skills due to how unintelligible his speech is. So we must plug away at speech therapy and wait until he develops more intelligible speech to be able to identify a more exact speech disorder. 

Matteo is so smart and inquisitive and like his sister, I'm curious what he's thinking and wish he were able to tell me.

Orphan Hosting FAQ's

Ian arrived in United States today and it's awesome how many people are interested in his story and have helped to advocate by sharing blog and Facebook posts within their networks. And with all that sharing, questions have naturally come up about orphan hosting. It's a new concept to most people, including those who have previously adopted internationally. To better understand the hosting program, I've compiled these frequently asked questions based on the questions I have received.

What is "orphan hosting"?
China is one of a couple of countries (along with Latvia and the Philippines, to name a few) that facilitates programs where children in state care come to the United States for a couple of weeks to experience the love of a family, life outside their orphanage and U.S. culture. It's an opportunity to learn about a child and any medical needs he or she has, and advocate for that child with information beyond what's in his or her adoption file. The ultimate goal is to connect potential forever families to these children, who would be otherwise harder to place if they had remained in their home countries. Typically, over 75% of children who are hosted end up being adopted after their first host trip, whether by their host family or their host family’s community members, extended family members, or friends.

Ian is being hosted through Great Wall China Adoption, based out of Austin, Texas.  Great Wall is one of many American adoption agencies with China hosting programs.  Children typically come for four to five weeks over the holiday season or in the summer.

Who's chosen for the China hosting program?
Staff from adoption agencies work together with orphanages they have established relationships with to identify children who are at risk of not being adopted, such as children who are older or who have significant and/or overwhelming-sounding special needs. These are the children who need an opportunity for people to get to know them beyond the little (and sometimes inaccurate or incomplete) information available in their adoption files. A medical diagnosis like cerebral palsy or the thought of parenting a 12-year-old boy may initially overwhelm a family, but if they meet a child and witness how mobile and independent she is despite muscle weakness, or meet that preteen and have the opportunity to form a bond, the leap of faith adoption requires feels less like jumping off the deep end.

Who hosts them?
Two types of families host, those who intend to adopt the child they are hosting and those who host in order to advocate.

What do families do to advocate?
Host families find different ways to spread the word about the particular child they're hosting, but also the many other children in orphanages in China who need families. They typically use social media and blog, but will also host gatherings in their community for friends and family to get to know their host child. 

If the host family wants to adopt their host child, can the child stay?
Oh how I wish there were so! At the end of the hosting term, the host children and their chaperones must return to China. The family can start the adoption process before the child returns, but they still must complete the same nine-to-10-month process as families who have not hosted. 

Why can the children only stay a few weeks?  Why can't they live with foster families in the U.S. until they are adopted?
The children participating in the China hosting program are Chinese citizens and are under the guardianship of orphanages in their home cities and are not eligible for foster care in the U.S.

Ian is so young. I thought only older children could be hosted.
Since most children who are chosen for a hosting program are at least seven or eight years old, it is unusual for a child this young to be hosted. However, his orphanage believes Ian's autism diagnosis is incorrect and felt strongly that his best chance of being a adopted would be to be hosted. In addition to advocating, his host family has a number of specialists lined up who will be providing evaluations pro bono. 


If I'm interested in adopting one of the host children, what should I do?
Contract Great Wall China Adoption at 512-323-9595.

Finding Ian's Forever Family

This boy, who is going by the nickname of Ian, will arrive tomorrow from China for a month's stay with a host family in Minneapolis. He's only four years old and was abandoned at age two for reasons we may never know. 

Ian has been living in an orphanage in China and needs a family and I know there's a family out there who needs Ian. However, without coming to the United States at the tender age of four, there's a very strong possibility Ian will never meet his forever family.

According to an advocate who's heavily involved in China hosting program,

"This little boy has a big label in his file, a file that was created when he first came into the orphanage at two years old. That label is autism. But, looking back at his history, the orphanage and our agency think that this diagnosis is potentially INACCURATE. He was shut down when he came. He is now active, lively, and has normal behavior according to the orphanage director. But that autism label can not be changed in his file. It will forever follow him."

I know how labels or inaccurate diagnoses can hurt a child's chance of being adopted. My daughter was misdiagnosed with cerebral palsy, which is crazy, because anyone who meets her can clearly tell she does NOT have CP. But that was the label her file contained, and even though she was a young, otherwise healthy girl - the epitome of the child so many families adopting from China seek to be matched with - families passed her over.  

I know the odds are stacked even more heavily against Ian.  He's a boy. He's already four.  And he's labeled as autistic. Adoption takes a huge leap of faith, and even more so when children have special needs, as all the children do who are eligible for international adoption from China. If the autism diagnosis is incorrect, it needlessly scares families away.  And even if it's correct, the needs of children with autism varies so much that such a label alone does little to prepare families.

This is why Ian's host family has set up evaluations with specialists who will help identify his medical needs.  But just as important, Ian's host family and other advocates will have the opportunity to get to know this little boy in a way that an adoption file of just a couple pages will never be able to convey. With our knowledge of who Ian is as a child, and not a label, we can advocate for him and encourage you to advocate for him as well.  

Starting Speech Therapy

This week starts speech therapy for both Kiera and Matteo.  I'm relieved they have finally been evaluated and recommended for therapy because I know they need the extra support.  Too many people have made excuses for them because "they're still learning the language." I think everyone who has interacted with my kids has really low expectations because they can't wrap their minds around these children moving around the world to a new family, language and culture.  And then they see two happy, well-adjusted kids and probably think, what more could I want from them?  

We underestimate being able to communicate, especially in young children who've gotten by so far with a lot of pointing and smiles.  Whether you're deaf and communicate with sign language or are hearing and communicate with spoken language, having the ability to communicate with other human beings impacts our happiness, our friendships and our learning.

While I never lost hope that Kiera and Matteo would experience an English-language explosion, my gut told me ignoring the problem wasn't going to help.  I know that if my children were speaking Chinese, they'd have the ability to learn English, and that they should be able to pick up words in a new language quickly, even if it takes up to two years to catch up to native-speakers.  The reality is that my children spoke no more than five words in Chinese when an almost-three-year-old like Kiera should have been jabbering away.  Some children leave China already speaking a couple words in English, whereas as at five months home, my children don't use more than five words in English to communicate.  We have recently heard them imitate words or randomly say a word, but not in context to communicate a need or want.  

For awhile I tried to stay patient.  Matteo needed surgery on his palate and wasn't physically able to say most sounds without a repaired palate.  Both children were diagnosed with conductive hearing loss, which we addressed through surgery and they passed their repeat audiology test one month later.  It was in the weeks following their surgeries that I really had hope that just any day now their language would come together, but it never did.  

I contacted Help Me Grow, a state-funded program that provides free therapy services for children from birth to age five.  Matteo easily qualified, and starts his first session this week, but since Kiera is over age three, it's harder to qualify for services and we'll need to wait until the fall to have her reevaluated. 

I also asked a fellow China adoptive mom in my area where her boys with cleft lip and palate go for speech therapy, and in addition to working with Help Me Grow, she recommended doubling up on therapy by also working with Gillette Children's Hospital, where Matteo had his palate surgery.  Kiera started her first session this week and we're in the process of scheduling Matteo with a therapist who works specifically with kids with cleft lip and palate.  

Therapists with both programs cautioned me that they're not miracle workers and that speech therapy takes commitment and time.  This is especially true for Matteo since kids with cleft lip and palate typically need years of speech therapy.  But we're now doing something proactive to support their speech development and that makes me feel better than if we were doing nothing at all. 

And that my children are able to attend their recommended appointments I owe all to my mother-in-law, Nan.  Each child will have one to two appointments through Help Me Grow and Gillette's each week, which means there could be some weeks in the fall when we have a total of eight therapy appointments scheduled.  Without Nan's offer to take them, the reality for our two-working-parent household is that we would not be able to pull off that level of therapy.  And that's even though I work ten minutes from home and five minutes from the hospital and have an incredibly flexible workplace.  

In addition to bringing Kiera and Matteo to their appointments, my mother-in-law takes incredible notes.  The evening of Kiera's first appointment, Nan e-mailed Chris, me and our au pair a summary of the session, the ten words in sign language we need to learn and practice with Kiera and links to a website to learn the signs.  (Sign language foster language development by giving non-verbal children a way to communicate.)  Chris and I may not have been able to make the appointment, but Nan made sure we didn't miss a thing.  

Now let's see if we can teach Kiera one more sign before her next appointment.