X-post: Update and apraxia info

[jstaggs]

Hi, Holt friends.
I've been absent for a while, but wanted to check in and update you all. Shu will turn 2 this Friday, and we'll celebrate one year with him on May 31! A few of you (China folks) know we have had a very difficult year in which I have had to let go of many of my expectations, and to be honest, have had to grieve the loss of "how I thought things should be by now." Often it's hard for me to see all the wonderful progress because I am so close to the situation. But I KNOW Shu is a completely different child than he was 11 months ago! I have had to learn to stop comparing our story to others' stories. It was painful for me to read about how beautifully and happily and quickly other children were adjusting, when my son was so unhappy and fearful....so I had to stay off the blogs and forums for a while. We will keep loving and keep growing, and I pray and hope that another year will bring even more significant change.

One challenge has been his diagnosis of Apraxia of Speech, a neurological disorder that affects motor planning. Definitely a surprise special need for us. I've been writing about it on my blog, hoping to inform or help others who are also dealing with apraxia. Here's my latest post:
http://staggsadoptionjourney.blogspot.c ... art-2.html

God bless you all!
Jerusha

[dagmara04]

I have a lot of sympathy My first son had a terribly difficult transition, rage and fear and horrible fits and night terrors and anxiety. I agree, it was hard to see everyone talk about love at first sight and knowing it was meant to be, etc. We had made a lot of progress in a year, but you're right--it got so much better over the next year. He is still more anxious and shy than average--we just decided he is not ready yet for preschool next year but making strides all the time. And I also see what you mean about recognizing progress. He saved a lot of his behaviors for home, so a lot of my friends and family thought he was doing better than he was. He honestly is such a joy--we sometimes say it took him two years to get to where he would have been if he had stayed in Korea.

I don't have any experience with apraxia but I hope you find some help and support.

Amanda

[jstaggs]

Amanda,
Thanks for the encouragement!

[JaM]

If you're on facebook there's a great apraxia group called "Apraxia-KIDS: Every Child Deserves A Voice" and there's some great blogs: http://theirwordstheirway.blogspot.com/ and http://loudmommy.com/

Apraxia greatly increases a child's stress level. We used baby sign language which helped A LOT! Check out "baby signing time" from your library. There's a children's series too but the baby set of four is great and worked better for my son when he was little.

I assume you're getting help with your local EI for apraxia?

When you have challenges you celebrate all the little things. I remember thinking "I must be the only mom excited to hear my son say 'NO'!"

[jstaggs]

Thank you, JaM! Yes, he gets therapy through Early Intervention...I cannot say enough good things about his speech therapist. She's truly a God-send for me and my (yes) very stressed little boy. Unfortunately, the same motor planning disorder that affects his speech also seems to affect his ability to sign. It took him six months to learn (or to be willing?) to sign "more." He knows a couple of signs now, but there are several others that appear to be impossible for him to sign. The signing seemed nearly as frustrating for him as the talking, so we finally decided to just focus on giving him verbal approximations that worked for both of us.

I know just what you mean about celebrating the little things. We are working on the word "NO" and I truly look forward to his being able to say it! I know he sometimes answers with something he doesn't really mean or want, simply because "yeah" is a word he can say.

[SoCaliGirl]

Thank you, JaM! Yes, he gets therapy through Early Intervention...I cannot say enough good things about his speech therapist. She's truly a God-send for me and my (yes) very stressed little boy. Unfortunately, the same motor planning disorder that affects his speech also seems to affect his ability to sign. It took him six months to learn (or to be willing?) to sign "more." He knows a couple of signs now, but there are several others that appear to be impossible for him to sign. The signing seemed nearly as frustrating for him as the talking, so we finally decided to just focus on giving him verbal approximations that worked for both of us.

I know just what you mean about celebrating the little things. We are working on the word "NO" and I truly look forward to his being able to say it! I know he sometimes answers with something he doesn't really mean or want, simply because "yeah" is a word he can say.

Our son also refused to use sign language. He watched the signing video but absolutely refused to try the signs, flying into a rage when we tried to encourage him. I think he just couldn't do it, couldn't remember the signs consistently, and was so frustrated that he refused to try. And, he had a good dose of defiance going too!

He also used to say yeah for everything, then fly into a rage if we acted on it. I'd ask if he wanted a toy, he would say yes, then throw it and have a tantrum if I brought it. He'd say yeah while pushing food away. He would say yeah about a nap and then freak out when he went into his bed. I had almost forgotten about all of this, but the days are so long, and I applaud you for trying so hard and harnessing your patience (it's nearly impossible some days, I know!).

[jstaggs]

We really want to teach him the power of his words, so we've had that same situation many times--where he answers "yeah" (as in, do you want to go sit on your stepstool--aka time out? or at the table--are you all done?). If he says yeah, then we follow through. A tough lesson at times, but it's definitely working.

[SoCaliGirl]

We really want to teach him the power of his words, so we've had that same situation many times--where he answers "yeah" (as in, do you want to go sit on your stepstool--aka time out? or at the table--are you all done?). If he says yeah, then we follow through. A tough lesson at times, but it's definitely working.

I know, you really want to go all out when they make the effort to talk, then you're disappointed when your efforts are met with anger! We too followed through, and then said, maybe, "Oh, maybe you meant no, you don't want that." Our son's comprehension was way behind where yours is though. Nowadays he's 4.5 and only now reliably saying yes/no.

[JaM]

If signing isn't working you can come up with your own sound approximation or just "sound" to mean something. I turned a sound my son could make (tongue clicking) and started applying to "food/eat." So he could make that sound and I would know he was hungry. Then moved on to work on pointing so he could point to what he wanted to eat. Then added head nod/shake to indicate "yes" or "no." Sometimes it's just meeting them where they are at and building on it...even if it is slow and unconventional.

[jstaggs]

Yep, JaM, that's exactly what we're doing. We know his sounds for the most part won't come out perfectly (or even close), so we'll take approximations...and then expect him to at least attempt to communicate verbally--we wouldn't have six or even three months ago, of course, but now he can. We do a lot of "rewarding the try" which decreases his stress and then makes him even more willing to try. I will never again take for granted the typical development of my other kiddos' speech!