Tag Archives: speech therapy

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High five

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Lina had her final visit yesterday with her KidTalk interventionist. (I actually don’t know if that’s the official term.) KidTalk is a research program through Vanderbilt University’s Kennedy Center. It focuses on communication development for kids with Down syndrome or autism.

Based on positive reviews from other families, we enrolled Lina in KidTalk last year. She went through the initial evaluation to qualify her for the study and was assigned to the intervention group (as opposed to the control group, which gets the intervention after the research period is over). For the intervention, we committed to four appointments a week: two in our home and two somewhere in the community, which for us was GiGi’s Playhouse and an office at Vanderbilt. During those appointments, the interventionist worked with Lina on speech development using a very specific play-based methodology honed over many years of research. For this specific study, the team was testing the use of an iPad app as an additional communication tool. The in-home visits also focused on training me in the intervention methodology. In addition to those appointments, we also committed to periodic evaluations at the Vanderbilt offices to track her progress.

Lina began the interventions last June. It was a huge commitment. Honestly, the study, combined with Lina’s weekly standard therapy appointments (speech, OT and PT), pretty much ate up our entire summer. Rather than going to swimming lessons and the zoo, Corin, Lina and I spent our time ferrying back and forth to appointments. I’m not going to lie: it was hard. I was tired a lot. I worried about what it meant for Corin. But I could see Lina responding to the interventions. Her progress became apparent, and that kept me going.

From almost the day Lina was born, Jon and I felt that communication was going to be one of the most important aspects of her development. It was apparent very early that Lina was bright and inquisitive, curious about her world and eager to learn and explore. We also knew that difficulty communicating could keep the rest of the world from seeing what we saw. We were determined to access any help we could find to push her speech development. We thanked God that an infant hearing loss diagnosis (which proved to be temporary) allowed her to qualify for earlier speech therapy than the Down syndrome diagnosis alone would have. She saw a wonderful Vanderbilt therapist weekly from the time she was about seven months old.

And now here we were, slogging through a very difficult summer in the belief that it would all pay off, that all these interventions and research-based methods would give Lina the support she needed to push her speech development forward. Her final intervention appointment was in August. We have since been back to the Kennedy Center several times for periodic follow-up evaluations. The last of those was February 15th. We also received periodic maintenance home visits from our much-loved interventionist, Tatiana.

Lina’s speech progress has seemed pretty obvious to me. We estimate she now spontaneously uses well over 200 words and signs, and even just in the last few weeks, her vocabulary has been exploding. She delighted her school speech therapist just today by suddenly greeting her by name, as if she’d been hanging on to that trick for just the right moment. On the way home, I was serenaded with “Jodie, Jodie” and a wide grin. She busted out the word “railing” on the way up the stairs yesterday. Every day there are new words; I can’t keep track of them all. Her receptive language has always been well ahead of her expressive – typical for kids with Down syndrome, and one reason sign language works so well – but we’ve seen tremendous strides there, too. I can reason verbally with her in ways that seem pretty typical for any three-year-old. She can follow two-plus step directions (although her wildly independent nature sometimes interferes!). She can easily understand advanced “first, then” concepts: “I know you want to play blocks, but first you need to finish eating your apples.” “We can go play outside, but you need to clean up your toys first.” I’ve found I no longer need to focus on simplifying language and concepts for her to understand: She gets pretty much anything I tell her.

But having said all that, I still sometimes second-guess myself. What if I’m overestimating her progress? I know she’s still delayed compared to her typical peers. Are we really pushing her enough? Why is that one word sounding so muddled? The guilt sets in: I haven’t done any KidTalk play with her for days. I need to be working more on that.

You can imagine, then, how I felt when yesterday, on that final visit, Tatiana told me that she had compared Lina’s last standardized evaluation with her initial one. She said, “Lina gained five points on her score.” I had no idea what that meant; five points didn’t sound like much. But she went on to explain that they almost never see that big a change. They expect to see an overall increase in points, because children will naturally be learning and growing over the course of the evaluation period. But in order for Lina to see that kind of scoring gain, she had to show significant improvement compared to typical progress they would expect in that time.

I don’t think the news really sank in for me until I started telling Jon about it yesterday evening. I know all the flaws and problems with standardized evaluations. I know they are snapshots of a moment and place in time and not a full picture of any child. But right now, that measurable sign of progress means the world. It really is clicking; my kid is learning to talk. All the hours we and her therapists have poured into her for the past 3 1/2 years are paying off. Someday soon, the world will be able to hear all she has to say.

I wish I could bottle this feeling to share with parents who have just received a Down syndrome diagnosis. Yes, a lot of things are going to be harder. There will be times you’ve gone over the same activities 1,000 times to little response. You will all get tired. But then, victory comes. Right there in front of you is undeniable proof of the payoff, and it is so, so sweet.

Sure, I’ve always known that work brings rewards, but it turns out it’s taking Lina to really teach me the fierce joy of hard-won milestones.

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Hearing and speech – or, she’s going to rock this

Need to know where the Vanderbilt Bill Wilkerson Center is? Trying to find an office in the Vandy Children’s Doctors’ Office Tower? Wondering where to park in the South or East Garage? I am now the girl to ask.

In the last week, Lina has seen the audiologist about hearing aids, followed immediately by her first visit to the pediatric endocrinologist for management of her hypothyroidism, followed yesterday by a visit to the pediatric speech-language pathology clinic for speech therapy evaluation. At least Vanderbilt appointments no longer involve mild panic over finding my way to the proper spot in that mini-metropolis.

So, here comes another bulleted list of appointment highlights. Probably not the most interesting reading, but full disclosure: this is likely to be a recurring feature.

  • The hearing aid decision was more complicated than the ENT led me to believe. He seemed to indicate the next step would be a bone-anchored hearing aid, but in talking with the audiologist, there was also a strong case to be made for trying traditional (and less expensive) behind-the-ear aids. We talked over the pros and cons, and I opted for a loaner set of behind-the-ear aids. We will pay for the custom in-ear pieces that attach to the aids, but it seemed to make sense to hold off on buying her own full set, as there is a chance the standard aids will not work well with Lina’s tiny ear canals. The loaners will be available to us for up to three months. Besides helping us determine if they even work for her, it will also buy us time until her next visit with the ENT, when we can hopefully get more information about longer-term solutions. The big question is how long it will be before Lina’s ear canals are big enough for tubes, which we hope may make the hearing aids unnecessary long-term. (This is by no means guaranteed.)
  • The endocrinologist visit was pretty straight-forward. Lina’s thyroid production is only slightly low; the doctor said that in some cases with Down syndrome, young babies with low numbers may actually outgrow the problem. She suggested that if things still look pretty good by the time she turns three, we may be able to try taking her off the medication. We have thankfully been able to switch from a liquid medication that had to be compounded at a special pharmacy every eight days to a much more manageable tablet I crush and give her with a little water.
  • The speech evaluation was very interesting to me. I loved the therapist we met with (who is unfortunately leaving to get married in a month), and she was very encouraging. This evaluation was the first time anyone had given us quantitative information about Lina’s development. Based on information I provided and observing Lina’s interaction with people and toys, the therapist was able to give her a numerical score for several areas, including hearing, communication and cognitive. Lina scored on the low end of the normal range for cognitive and in the mild delay range on everything else. Her milestones are on par with a typically-developing 4-month-old. (That part was a little hard to hear.) The therapist was very pleased with the progress she has made thus far on her own and felt that with speech therapy (twice monthly for now), she could continue to make steady progress. She said that therapy should be able to help avoid a tendency for developmental gaps to widen after kids turn one. She felt Lina’s current progress has been helped a lot by being close to me all day, in a relatively quiet home environment with a lot of one-on-one interaction. I hadn’t thought too much about physical proximity and background noise, but it makes sense that those things would be factors for a child with hearing loss.

Running around to so many appointments has been exhausting, but I continue to be thankful that we have good resources for managing the challenges Lina is facing. I feel really good about the experts on Team Lina, and I like that we’re being proactive with therapy. She’s going to rock at this.  

And from the last few days, for fun:

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One appointment at a time

Yesterday was Lina’s second visit to the Vanderbilt Pediatric Down Syndrome Clinic. The visit entails a series of appointments with professionals who all specialize in Down syndrome, beginning with the pediatrician and moving on to a nutritionist and speech/feeding, physical and occupational therapists. It makes for a very long morning, but these appointments have so far been infinitely helpful, and the professionals who see Lina at the clinic know their stuff and are incredibly encouraging and supportive.

So here’s the run-down of her visit yesterday:

1.) She is growing beautifully – in the 65th percentile for height and 67th for weight on the DS charts – and is making great strides in her development, staying right on track with her speech and physical milestones.

2.) They are recommending she begin speech and physical therapy, not because of any specific concerns, but in order to best support her continued progress. A Down syndrome diagnosis alone would not qualify her for speech therapy at this age, but she does qualify based on her diagnosis of conductive hearing loss. Her physical therapy appointments will be in-home with the early intervention therapist, but we are leaning towards taking her to Vanderbilt for speech, where they have therapists specializing in kids with hearing loss. Her initial speech evaluation at Vandy is scheduled for next Thursday.

3.) They drew blood to check Lina’s thyroid function, and it came back low. Hypothyroidism is very common with Down syndrome, and thankfully, it is easily treated with a synthetic hormone she will take for the rest of her life. Didn’t prevent me from having that moment: “Great. One more thing that will make her different and require management.” She has an appointment with a Vandy pediatric endocrinologist next month. Ultimately, I’m thankful to have the knowledge and be able to treat the problem quickly to avoid complications.

4.) She now also has an appointment scheduled for September with a pediatric ophthalmologist at Vanderbilt for her first vision check.

Clearly, we are transitioning from the early days, when little was needed besides normal infant care, to a time of increasing therapy and medical needs. It’s requiring some shoring up of my courage to face the growing number of appointments, recommended therapy exercises and other expanding needs for Lina. But this is my job as her mama (with lots of help from her daddy), and I am determined to do it with all the strength I have. I came away from yesterday’s appointment encouraged. Lina is doing great, and we have such fantastic resources available to us. I love that we have the opportunity to equip her for a happy, successful life. I have big dreams for her, and they start here and now, one appointment at a time.