Speech Therapy Progress Update

A question commonly asked is how learning English is coming along for Kiera and Matteo.  As far as we're concerned, they understand English really well.  Even in the early days and weeks home when there were occasions they couldn't have understood what everyone was saying to them, they never seemed upset or frustrated due to lack of comprehension.  Because of their young ages, they learned English quickly and we never needed to rely on translators. 

Speaking English has not happened at the explosive pace that their language comprehension has occurred.  And it's not because they haven't learned English, it's because they both have speech delays, and very significant ones.  Of all their medical needs and catch-up care we've tended to the last 11 months, speech therapy has dominated most of our time.  

Matteo
We knew Matteo would need years of speech therapy because he was born with cleft lip and palate. The idea of speech therapy seemed so straight-forward initially. The therapists would teach him how to talk and we would watch him progress with leaps and bounds.  The difficulty of understanding his speech would be similar to a child with a lisp or mild speech impediment.  Of course this has not been our experience. 

I had little understanding of what kind of time commitment, patience and emotional fortitude Matteo's speech therapy needs would require. I wasn't prepared for a child with no intelligible speech who eventually didn't even try to say anything, perhaps because he had learned no one understood him. I was relieved to finally get him started on intensive speech therapy where he had up to four sessions a week - two at our local children's hospital with speech therapists who work specifically with kids with cranial facial differences and two through our school district's Early Childhood Special Education department.  I thought all we needed to do was put in the time. Given how hard Matteo worked, we should have seen  more progress, but we didn't. I don't think I'm exaggerating when I say that I can understand maybe 10% of what he says. There are so many sounds he simply cannot make. 

I was not surprised when Matteo's speech therapist and surgeon advised that he needs another surgery.  His bilateral cleft lip had been repaired at five months of age in China and he had surgery a month after coming home to repair his bilateral cleft palate. Closing his palate prevented food from coming out his nose when he ate, but we had to give speech therapy a couple of months before we would know if the procedure had done enough to help his speech.  It was clear to me very early on that the palate repair alone was not going to be enough for Matteo. His surgery next month will involve two procedures - a fistula repair (to repair the hole in the roof of his mouth that was created when his palate repair dehissed) and a pharyngoplasty, (also called a "P-flap" surgery) which will lengthen his soft palate and, fingers crossed, improve his speech.

The P-flap surgery won't be a magic procedure, unfortunately.  Matteo's speech therapy will continue for years as he works to master each and every sound in the English language.  However, I'm hopeful that the surgery in February will allow him to make sounds he is currently not able to make and will make more of his speech intelligible, even if not perfect.  

Kiera
The root of Kiera's speech and language delays is still a big mystery that we've spent the last 11 months trying to figure out.  Although she had not been diagnosed with any speech delays while in China, we knew based on the updates we had received prior to traveling to meet her that she had significant delays. When Kiera was two years and nine months old, I had asked the orphanage how many words she had or if she had too many words to count, and the response was simply, "She can say, Mama, Papa and sister."  She didn't have any two-word phrases.   

The little girl we met in China was happy, but quiet.  Just like we had been told in an update, she got her needs met through a lot of pointing and smiling, and by our observation, just looking plain cute. While many kids have a handful of English words before they even arrive in the United States, Kiera wasn't saying words in any language, or even vocalizing much. We attributed this to her shy, cautious and quiet demeanor. Her nannies and foster family had reported that even as a baby she was quiet and didn't cry a lot.

Home in the U.S., the ENT discovered that Kiera had a significant amount of ear wax impacted on her ear drum and I thought for sure the mild conductive hearing loss that caused was the reason she wasn't talking.  She just couldn't hear!  With the ear wax removed and some more time exposed to English, I eagerly waited for the language explosion to finally occur.  Still nothing.

At follow-ups at the ENT, her right ear kept failing the OAE and they sent her for additional testing under general anesthesia right before Thanksgiving. Even though the doctor assured me that even if she was completely deaf in her right ear, it would not affect her ability to learn to talk, I couldn't help but "hope" deafness would explain Kiera's lack of words and what we were noticing to be an inability to follow multi-step directions or answer open-ended questions. 

The audiologist met me in the waiting room following the testing and announced that Kiera's hearing was perfect.  Those failed hearing tests in the ENT's office was due to what the audiologist had discovered was a "weirdly-shaped" ear canal.  No one could figure that out before we put our daughter under general anesthesia.      

As I continued to be concerned, it felt like everyone around me was telling me to relax because she was going to talk when she was ready or that I couldn't "get" her to talk if she didn't want to. No one had ever met a child adopted from another country and it seemed as if everyone was simply amazed that this cute and endearing little girl was doing as well as she was doing and easily overlooked that she wasn't talking. 

At five months home, I finally got Kiera into speech therapy, but not without a lot of advocating and a bit of a fight. One of the speech therapists at our local children's hospital commented with a hint of frustration in her voice, like I was wasting her time, that their role wasn't to teach Kiera English.  No one seemed concerned that at nearly three years old, Kiera had maybe five words in her native language.  In their opinion, Kiera just needed to learn English.

Language delays are not uncommon from children raised in even the best of orphanage environments, because nothing replaces the positive impact a loving and stable family has on a child's development. Yet Kiera had what my admittedly non-professional opinion felt like were pretty significant language and speech delays that couldn't be completely explained away by an orphanage upbringing.  Kiera came from an orphanage where the kids were well taken care of and she had spent the last year before we met her in a foster family where she was doted on and well-loved.  She attended preschool more days a week than Oliver and Soren did back here in Minnesota.  No, she was not living in a permanent family where her parents read to her every day and made sure she was meeting all her milestones, but she was not in a horrible orphanage setting where she sat in a crib most of her day and no one talked or played with her.       

That we were successful in getting speech services for Kiera was not because anyone listened to my concerns about her lack of language in Chinese or English or her questionable receptive language ability, but because an evaluation of Kiera's speech identified that she drops the last consonant sounds when she mimics words. My disagreements with the speech therapists aside, she was at least in speech therapy and I was hopeful that we would finally start to hear her voice more often. 

Kiera worked very hard at speech therapy for what consisted of up to four sessions a week. She enjoyed going and was persistent, but six months in and she had gained little progress.  Her vocabulary had increased, but she still speaks mostly with single words - when she initiates speech at all - and has only about three two-word phrases she uses.

The only noticeable change in her speech is that for a kid who can't talk, she can be quite loud!  She was super quiet the first couple of months home and while she's still quiet overall, when she's playing, she can make a lot of noise.  While she will patiently and persistently mimic words and even answer questions asked of her during a speech therapy session, all the vocalizing she does while playing isn't discernible speech.  It doesn't even sound like she's trying to make real words. (Except for the word, "Mine!" She quite good at that one.)

It's the lack of initiative to speak and the inability to answer questions that concerns me more than Kiera's articulation issues.  Other than sometimes saying "Potty," when she has to go, she does not use words to express her needs or wants.  She can't answer open-ended questions like asking her what she wants for a snack and will only answer if you give her choices to choose from.  We often don't trust her answers, even in this case, because it seems like she knows we expect an answer, so she just chooses one of them.  She will usually talk if we ask a direct question like pointing to an object in a picture book and asking what it is.  

I'm working on getting Kiera re-evaluated, because my gut says something isn't right, but I don't know what the answer is.  I don't know if it's an auditory processing disorder, apraxia of speech, anxiety or a combination of things.  It is possible she truly is a late bloomer.  I've learned that speech disorders are difficult to properly diagnose, especially in young children, but that early intervention yeilds the best outcomes.  There are also different approaches to therapy depending upon the disorder, which is why proper diagnosis is so important.  

I've been accused of worrying too much and told to just let it be, but my job as Kiera's mom is to be her advocate. She didn't have that for the first three years of her life.