MILLIE!
Well, maybe not a problem, really, more like a mystery. Let me describe her for you:
Almost 3-and-a-half
Has verbal apraxia. For more on this go here: http://www.apraxiakids.org/
Sensory seeking. For an interesting blog post on this go here: http://www.hartleysboys.com/2010/08/sensory-seekers-and-sensory-avoiders.html
Extremely active; does not do well with boredom. She is the child that causes me to be always vigilant. If she's not into something she shouldn't be after I leave her for a few minutes to put away laundry or something else, well, that's unusual.
STRONG-willed
Am I leaving out anything? Oh yes, has a newly-adopted sister, also 3, that she has a mostly-love/but sometimes hate relationship with. She is still excited Vika is here, but she's definitely not too thrilled about sharing Mom and Dad with her most days.
I have yet to find the manual on raising this type of child. You can find books on apraxia, books on sensory-seeking, you can find books on strong-willed, but all of them together, hmmm.... no. The apraxia complicates everything else.
Her apraxia is, in this layman's opinion, severe. The only sounds she can produce consistently, on purpose, are 'b', 'd', 'm', and 'p'. She can usually say 'momma' and something close to 'dada', often 'papaw.' That's it. Other approximations of words will sometimes come out, almost on accident, but she is unable to produce them again. Her speech is basically at the same place it was when she was 12-18 months old. No progress, words spoken and then lost - signposts of apraxia. And it's not for lack of desire. If there's one thing I'm sure of, it's that Millie wants to talk! I have had so many people tell me that she'll talk when she decides she wants to. Uhhhhhh.....no. Millie is one of the most social beings I've ever known. She wants to communicate. Trust momma on this one.
Extremely active; does not do well with boredom. She is the child that causes me to be always vigilant. If she's not into something she shouldn't be after I leave her for a few minutes to put away laundry or something else, well, that's unusual.
STRONG-willed
Am I leaving out anything? Oh yes, has a newly-adopted sister, also 3, that she has a mostly-love/but sometimes hate relationship with. She is still excited Vika is here, but she's definitely not too thrilled about sharing Mom and Dad with her most days.
I have yet to find the manual on raising this type of child. You can find books on apraxia, books on sensory-seeking, you can find books on strong-willed, but all of them together, hmmm.... no. The apraxia complicates everything else.
Her apraxia is, in this layman's opinion, severe. The only sounds she can produce consistently, on purpose, are 'b', 'd', 'm', and 'p'. She can usually say 'momma' and something close to 'dada', often 'papaw.' That's it. Other approximations of words will sometimes come out, almost on accident, but she is unable to produce them again. Her speech is basically at the same place it was when she was 12-18 months old. No progress, words spoken and then lost - signposts of apraxia. And it's not for lack of desire. If there's one thing I'm sure of, it's that Millie wants to talk! I have had so many people tell me that she'll talk when she decides she wants to. Uhhhhhh.....no. Millie is one of the most social beings I've ever known. She wants to communicate. Trust momma on this one.
She's been in speech therapy since last summer. Has it helped? Well, yes, and no. Yes, it's helped me to know how to elicit some kind of communication from her, even only a sound or a sign. But has her speech improved? not really. Hate to be so blunt, but it's the truth.
As she gets older, it gets harder for us both to deal with. I know she has more to say. She is very demanding, not really in a bad way, she's just always wanting something. I get so weary trying to guess what she's after or telling her 'Sorry, but Momma doesn't know what you want.'
I think, and I've read this too, that a lot of her behavior problems are the result of her apraxia. Because she can't express herself normally, she acts out just so she can communicate something. So, I struggle, how much to discipline, what kind of discipline. I told her yesterday in her bedroom, after I had taken her there because she was pushing and hitting her siblings, that I knew it was hard for her because she couldn't talk and one day she would be able to talk to us and tell us what she was thinking. She suddenly got quiet and looked at me and nodded her head in understanding. Oh my goodness, *tears*. Just knowing your kid knows they're different is hard to take.
Still, lest you think that life with Millie is terribly bleak, let me mention a few things I left out: Millie has tons of personality; she makes friends and wins people over so easily; she has an incredible enthusiasm for life; she's a performer (future piano player? or maybe dancer). Just see for yourself.
As she gets older, it gets harder for us both to deal with. I know she has more to say. She is very demanding, not really in a bad way, she's just always wanting something. I get so weary trying to guess what she's after or telling her 'Sorry, but Momma doesn't know what you want.'
I think, and I've read this too, that a lot of her behavior problems are the result of her apraxia. Because she can't express herself normally, she acts out just so she can communicate something. So, I struggle, how much to discipline, what kind of discipline. I told her yesterday in her bedroom, after I had taken her there because she was pushing and hitting her siblings, that I knew it was hard for her because she couldn't talk and one day she would be able to talk to us and tell us what she was thinking. She suddenly got quiet and looked at me and nodded her head in understanding. Oh my goodness, *tears*. Just knowing your kid knows they're different is hard to take.
Still, lest you think that life with Millie is terribly bleak, let me mention a few things I left out: Millie has tons of personality; she makes friends and wins people over so easily; she has an incredible enthusiasm for life; she's a performer (future piano player? or maybe dancer). Just see for yourself.
"Talent needs no words," said the proud mom.
People are always, understandably, asking us how Vika is doing. And really, she continues to do very well. Of course, there are problems. She is pretty moody, laughing one minute, crying the next. She gets stressed at times with all the activity in the house. She still doesn't chew. She grinds her teeth, a lot. But overall, we've been very fortunate with how well she's done. Millie is the one who keeps me on my toes. Vika is a pleasure to parent most of the time. Millie is extremely loveable, as well, but oh my, is she a challenge.
If anyone reading this has experience with a kid like Millie, I would love to hear from you. I have read lately how fish oil has been reported to help kids with apraxia, so I plan to give that a try. It's a little bit of hope. The only other thing I can do is to go to the One who knows all about little Millie and cry out for help, because I for sure don't have any more answers.
7 comments:
I have no experience or advice to offer, but I liked reading your post. Millie makes me smile whenever I see her. She definitely has "tons of personality"!
-Jen Frazer
Melanie, I was looking around on the internet and found this article.
http://www.speechlanguagefeeding.com/seventy-percent-apraxia-cases-wrongly-diagnosed/
The author talks about how important it is to get a Speech Language Pathologist with the proper knowledge and experience with Childhood Apraxia of Speech.
A quote: "So if you are a parent of a young child who is diagnosed with Childhood Apraxia of Speech and you are searching and searching for answers and opinions, stop now. Find yourself an excellent Speech Language Pathologist with the proper experience and start therapy immediately."
Susan
Some assistive speech devices, such as dinovox, can open up the world for kids who don't have speech. Some of them are very simple and can "grow" with a child's needs. These types of devices have a great range in price. Go check them out online - I can't tell you the difference I have seen these make for kids who can't access speech. You can even go on Youtube and see videos of kids with different disabilities using ASD's. Good luck!
I came to your blog from the Reece's Rainbow site---congratulations on your upcoming adoption of Spencer!!
Our son had severe speech delays and apraxia and autism were both thrown around as possible diagnosis. He had neither and therapy for either would not have helped. What has helped him more than anything else is using Dr. James MacDonald's communicating partner techniques---he has a great book called Play to Talk and is very active on a yahoo group! An amazing man with a huge heart for any language delayed child. His ideas will definitely help you with your other kids too!
I also just came to your site from RR and want to say congratulations as well! I love Spencer!
My own Spencer is also a sensory seeker, diagnosed as autistic (though he doesn't really fit that diagnosis any more, more like ADHD with a speech delay), and we discussed the possibility of apraxia with his SLP a couple of years ago, though he was never officially diagnosed with it. I definitely concur on the acting out because of the lack of ability to communicate -- we had the exact same issue, and his tantrums, etc have gotten _so_ much better as our ability to communicate has gotten better. I don't want to try to list all the things we've tried, what's worked and what hasn't, what we're currently doing, etc in a blog comment, but your Millie sounds a lot like my Spencer (just a few years younger), and if you ever want to chat, I'd love to! You can e-mail me at evansadoption@gmail.com
Our speech therapist introduced our son to a dynavox type device 6 weeks after his stroke when she took over his care. He lunged for it, he knew what it was, and he was desperate to communicate. It had a large screen and was very simple to use. He had mainly been communicating through sign language(which he taught himself)since the stroke. Although his is Brocas Aphasia there are a lot of similarities. Good luck!
I have a little boy whose apraxia of speech is very mild. . . but you should not be fighting your insurance over this - if Millie is three, then your local school district should be providing speech services for her and, basically, any other PT/OT she needs for her sensory issues - try Easter Seals if you have one in your area, for advice and guidance - but I would definitely contact your county's regional board of education and find out where/when/how to have her screened and get an IEP in place to provide services. (Even if you homeschool, they provide services.) Just my .02-cents - as a mom of a kid with apraxia and a former school board member.
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