Thursday, February 7, 2013

feeling heard.

Wow - thank you. Your response to my post on Tuesday was overwhelming, and I'm so glad I finally decided to click "publish" on something that has been weighing on me for a while now. It actually was inspired by the Just Write initiative which I've been wanting to participate in ever since I first started reading The Boho Mama and her beautiful posts, and when I sat down to write that was what was on my mind.

It had felt strange not to share what's been on my mind for the last few months, but it was scary to put it out there: my daughter has a diagnosed language delay. Scarier in some ways, perhaps, because of my own background as an educator and specifically a literacy specialist. I quit my job to stay home with my daughter to make sure she had every advantage possible - and now this? It's hard not to feel like a complete failure.

I know, I know, it's not my fault. But it's your kid. So everything feels like your fault, you know?

feeling in over our heads sometimes...

In addition to the comments I've gotten on the blog, I've received several emails, and I wanted to address a couple of questions and provide some resources to you, too:

How do you know it's a delay? Maybe she's just a late talker.
I've suspected that Lorelei had language issues for quite a long time - she didn't start babbling until she was 9 or 10 months old, and I knew that her word production was significantly smaller than milestone charts would suggest (by 18 months, many kids say 50+ words and the expectation is at least 15; you already know Lorelei's list). At her 18 month "well child" visit, we discussed her language skills with her pediatrician, and he agreed that we needed to move forward with testing. (We had already done a special hearing exam months before to rule that out as a factor.) The testing revealed that, while Lorelei's receptive language skills are excellent, her expressive language is at about a 9-12 month level. She also shows some signs of a disorder called apraxia of speech, such as a fixation on one specific consonant sound (in her case, "da") that is used for every word, the loss of words that she once had in her vocabulary, and the inability to imitate sounds or mouth movements produced by others even with significant modeling and prompting. She's really too young for an apraxia diagnosis, so at this point we're just using some of the strategies and techniques for treating it and otherwise are in "wait and see" mode - but if it is apraxia, it won't get better without treatment.

Don't all toddlers have a hard time speaking? How can speech therapy work at this age?
That's true - they do. And that's why we're going to see a speech therapist who specializes in working with children between the ages of 18-36 months. The earlier you catch and treat speech problems, the more likely the child will be able to make the necessary gains and speak normally - which is exactly why Congress passed the Early Intervention legislation way back in 1986. By law, each state must provide free and low-cost testing and treatment services for infants and toddlers (0-3) with disabilities of all kinds.

What if I suspect my child has a developmental delay?
Your best line of defense? Your child's doctor. The internet is a scary place and a little information can be a dangerous (and misleading) thing, believe me. Write down all of your observations and concerns to share at your next visit - the more details you can provide, the better. We're grateful to have a pediatrician who is pretty relaxed about most things (his most common answer to our questions: "It's fine. These things are variable."), so we knew we could trust him not to be overreacting when he advised us to move forward with testing.

For more information, I found the following links helpful:

HealthyChildren.org's toddler growth and development page, with specific information about physical, social, cognitive, and language development from the American Academy of Pediatrics

Early Intervention - an overview of the legislation that mandates free assessment and services for children with disabilities, as presented by the non-profit autism-awareness organization First Signs, with links to help you find information about your own state

Teach Me To Talk - a great resource on helping toddlers to speak, with helpful videos and tips/tricks for working with your kiddo at home - all presented by a licensed speech/language pathologist

This isn't going to become a blog devoted to discussions of the minutiae of Lorelei's speech therapy sessions, but I'm sure I'll post here and there about how things are progressing. Thanks again for your care and concern for all of us. xo

2 comments:

  1. Gosh she's cute. So glad you hit that publish button :) Thanks for the links, I'm really wondering about Ruthie and her "bah" for every single expression...I look forward to keeping up on her progress and your journey through this!

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  2. Thanks for sharing this. I nearly fell over reading about her looking for the fairy pacifier because of the wand. She is a very neat girl and she is certainly seeing the world in her own magical way. She's lucky to have wonderful parents. I know there is little I can say because I don't have kids and can only relate in a peripheral way but I can tell you are doing everything right and your darling girl sounds so charming and sweet!

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