Comments on: YOU ARE NOT ALONE http://jenkrause.com/blog/2011/08/you-are-not-alone/ by Jen Sat, 19 May 2012 20:37:50 +0000 http://wordpress.org/?v=abc By: Misty http://jenkrause.com/blog/2011/08/you-are-not-alone/#comment-2226 Misty Fri, 04 May 2012 19:52:01 +0000 http://jenkrause.com/blog/?p=2108#comment-2226 Thanks for posting! I can relate on all levels with this mama. My son has been in early intervention since the age of one, he just turned three. We are still waiting on a diagnosis, but he is being treated like he has CAS. I can remember his first word at 18 months, "mom". It is the only word he didn't lose (maybe because I so persistent and always wanted to hear it). Like Becky, I had problems with breastfeeding and my son has been considered low weight gain since he was born. He was late in all his gross motor skills and did not walk until 23 months. It has been a very lonely road as we watch all the other kids, in our circle of family and friends, walk and talk. It is like being in a race, watching all the other contestants cross the finish line and not knowing when or if we ever will. Thanks for posting! I can relate on all levels with this mama. My son has been in early intervention since the age of one, he just turned three. We are still waiting on a diagnosis, but he is being treated like he has CAS. I can remember his first word at 18 months, “mom”. It is the only word he didn’t lose (maybe because I so persistent and always wanted to hear it).
Like Becky, I had problems with breastfeeding and my son has been considered low weight gain since he was born. He was late in all his gross motor skills and did not walk until 23 months.
It has been a very lonely road as we watch all the other kids, in our circle of family and friends, walk and talk. It is like being in a race, watching all the other contestants cross the finish line and not knowing when or if we ever will.

]]> By: Molly http://jenkrause.com/blog/2011/08/you-are-not-alone/#comment-2223 Molly Tue, 24 Apr 2012 14:53:53 +0000 http://jenkrause.com/blog/?p=2108#comment-2223 Thank you for sharing this. My son just turned three, and I'm right there with you. You are definitely not alone, and I'm trying to learn what Kristen wrote--remember the good and try not to worry about the future. Unfortunately, so much of our life is enveloped in apraxia--as you all know--you spend your life at speech therapy, turning every interaction into a mini therapy session, etc., it's hard to step back sometimes, isn't it? I love reading about all of your messages of hope. Our little ones are working so hard! Thank you for sharing this. My son just turned three, and I’m right there with you. You are definitely not alone, and I’m trying to learn what Kristen wrote–remember the good and try not to worry about the future. Unfortunately, so much of our life is enveloped in apraxia–as you all know–you spend your life at speech therapy, turning every interaction into a mini therapy session, etc., it’s hard to step back sometimes, isn’t it?

I love reading about all of your messages of hope. Our little ones are working so hard!

]]> By: Kristen http://jenkrause.com/blog/2011/08/you-are-not-alone/#comment-2222 Kristen Mon, 23 Apr 2012 01:40:50 +0000 http://jenkrause.com/blog/?p=2108#comment-2222 Thank you for sharing your story and this email. It is a true journey as a parent but it is one of the hardest when your precious child struggles to talk. My son is three and he has worked so hard to speak. Sometimes I just wish that I could make his life a little easier. My husband and I try to cherish each word and gain. Sometimes it is hard to remember all of the good and not take this time with worrying about the future. Thank you for sharing your story and this email. It is a true journey as a parent but it is one of the hardest when your precious child struggles to talk. My son is three and he has worked so hard to speak. Sometimes I just wish that I could make his life a little easier. My husband and I try to cherish each word and gain. Sometimes it is hard to remember all of the good and not take this time with worrying about the future.

]]> By: Rick http://jenkrause.com/blog/2011/08/you-are-not-alone/#comment-2165 Rick Fri, 03 Feb 2012 02:17:36 +0000 http://jenkrause.com/blog/?p=2108#comment-2165 Reading over some of the replies, this particular email, and your blog, I can't help but cry myself. My son is two and a half, and has exhibited everything described in this post. He's been evaluated numerous times, and they just keep saying that he'll outgrow it. He hasn't outgrown it. Ironically, he used to be able to say daddy, doggie, and ducky, and gradually stopped. He can't make certain facial expressions (can't close his lips to kiss or drink through a straw). When he sees something exciting, like a bus, truck, or train, he screeches his approval. He knows all of two signs, please and hungry, and the rest of the time we get by on nonverbal communication. We finally got a referral to a local clinic that specializes in autism and other delays, and had him evaluated. We get the results of the evaluation next week. We're convinced CAS is his diagnosis, as his symptoms are identical. I can't help but cry, because he's perfect in every way except for his speech. It hurts to see him hurt, because he's trying desperately to communicate, and he can't. Thanks for the posts; I know I'm not alone, it's just hard to cope with right now. I find myself wondering if he'll ever talk, and all I can do right now is hold out hope. Reading over some of the replies, this particular email, and your blog, I can’t help but cry myself. My son is two and a half, and has exhibited everything described in this post. He’s been evaluated numerous times, and they just keep saying that he’ll outgrow it. He hasn’t outgrown it. Ironically, he used to be able to say daddy, doggie, and ducky, and gradually stopped. He can’t make certain facial expressions (can’t close his lips to kiss or drink through a straw). When he sees something exciting, like a bus, truck, or train, he screeches his approval. He knows all of two signs, please and hungry, and the rest of the time we get by on nonverbal communication. We finally got a referral to a local clinic that specializes in autism and other delays, and had him evaluated. We get the results of the evaluation next week. We’re convinced CAS is his diagnosis, as his symptoms are identical. I can’t help but cry, because he’s perfect in every way except for his speech. It hurts to see him hurt, because he’s trying desperately to communicate, and he can’t. Thanks for the posts; I know I’m not alone, it’s just hard to cope with right now. I find myself wondering if he’ll ever talk, and all I can do right now is hold out hope.

]]> By: Becky http://jenkrause.com/blog/2011/08/you-are-not-alone/#comment-2155 Becky Wed, 04 Jan 2012 15:20:02 +0000 http://jenkrause.com/blog/?p=2108#comment-2155 Oh my gosh. I read this post and bawled. This was SO my son and my feelings as well. My son could NOT get the hang of breastfeeding. He lost so much weight that we needed to treat my 8#13oz baby as a preemie for the entire 1st year of his life. He was so gaggy that he would throw up at the slightest discomfort (a burp bubble? throw up. a non-pureed food? throw up). I had sucessfully nursed (and tandem nursed and was a La Leche League avid supporter!) 3 children before him, but all I could do for this child was pump and supplement with high calorie formula (I had never used the stuff...had to read the directions even!) I felt SO much guilt. Like I was doing something to cause his delays. I have 2 great nephews that were born within months of my son's birth. I know you shouldn't compare, but how couldn't I? My oldest child (also a boy), was an early talker (saying "Mama" at 5 months, full sentences at a year), so people would tell me that it was just because he was a boy and I knew better. The looks people would give when they would say something to him and he wouldn't respond or sometimes even make eye contact. I dreaded leaving the house. I didn't want to have to explain to people that he couldn't talk yet. That he wasn't eating "regular" table food until 15 months. Going to his well checks at the doctor put me into a crying jag that I couldn't seem to get out of. At 20 months he started speech therapy through the local Birth to 3 program (where they were either leaning toward Autism or Apraxia). In that time (7 months now), he has picked up quite a bit of communication. It's unbelievable. I am in a different place now, too. I don't feel like I need to apologize for his difficulty in communication, but I help people to understand. We celebrate his successes. He has learned quite a few signs and still has pop out words that make us laugh ("crocodile" is my favorite). The day he started saying "Mama" is one I will never forget...nor is the day that he took me by the hand and pulled me to the patio door because he wanted to play outside. I have realized that communication does not always have to be verbal and when we stopped focusing on that, it takes the pressure off of his brain and he tends to say things with less difficulty. The biggest thing I feel is alone. I don't personally know anyone else who has a child with Apraxia. Today I decided to google for blogs...I'm sure glad I did! Oh, and though we had a rough start with his feeding/weight...my son is now 27 months, in a 4t, 40" tall and weighs 36 lbs. Celebrating! :) Oh my gosh. I read this post and bawled. This was SO my son and my feelings as well. My son could NOT get the hang of breastfeeding. He lost so much weight that we needed to treat my 8#13oz baby as a preemie for the entire 1st year of his life. He was so gaggy that he would throw up at the slightest discomfort (a burp bubble? throw up. a non-pureed food? throw up). I had sucessfully nursed (and tandem nursed and was a La Leche League avid supporter!) 3 children before him, but all I could do for this child was pump and supplement with high calorie formula (I had never used the stuff…had to read the directions even!) I felt SO much guilt. Like I was doing something to cause his delays. I have 2 great nephews that were born within months of my son’s birth. I know you shouldn’t compare, but how couldn’t I? My oldest child (also a boy), was an early talker (saying “Mama” at 5 months, full sentences at a year), so people would tell me that it was just because he was a boy and I knew better. The looks people would give when they would say something to him and he wouldn’t respond or sometimes even make eye contact. I dreaded leaving the house. I didn’t want to have to explain to people that he couldn’t talk yet. That he wasn’t eating “regular” table food until 15 months. Going to his well checks at the doctor put me into a crying jag that I couldn’t seem to get out of. At 20 months he started speech therapy through the local Birth to 3 program (where they were either leaning toward Autism or Apraxia). In that time (7 months now), he has picked up quite a bit of communication. It’s unbelievable. I am in a different place now, too. I don’t feel like I need to apologize for his difficulty in communication, but I help people to understand. We celebrate his successes. He has learned quite a few signs and still has pop out words that make us laugh (”crocodile” is my favorite). The day he started saying “Mama” is one I will never forget…nor is the day that he took me by the hand and pulled me to the patio door because he wanted to play outside. I have realized that communication does not always have to be verbal and when we stopped focusing on that, it takes the pressure off of his brain and he tends to say things with less difficulty. The biggest thing I feel is alone. I don’t personally know anyone else who has a child with Apraxia. Today I decided to google for blogs…I’m sure glad I did! Oh, and though we had a rough start with his feeding/weight…my son is now 27 months, in a 4t, 40″ tall and weighs 36 lbs. Celebrating! :)

]]> By: Suzanne http://jenkrause.com/blog/2011/08/you-are-not-alone/#comment-2132 Suzanne Fri, 16 Sep 2011 05:24:38 +0000 http://jenkrause.com/blog/?p=2108#comment-2132 This is my son. Definitely. We got him evaluated in April and by May I was hearing apraxia. He still only says a few words. It is definitely nice to know that you are not alone. This is my son. Definitely. We got him evaluated in April and by May I was hearing apraxia. He still only says a few words. It is definitely nice to know that you are not alone.

]]> By: Jenny http://jenkrause.com/blog/2011/08/you-are-not-alone/#comment-2130 Jenny Thu, 15 Sep 2011 18:28:44 +0000 http://jenkrause.com/blog/?p=2108#comment-2130 Thank you so much for sharing - I'm at the same point in my journey and am experiencing the same feelings and frustrations. So glad I found your blog. Thank you so much for sharing - I’m at the same point in my journey and am experiencing the same feelings and frustrations. So glad I found your blog.

]]> By: Jacqui http://jenkrause.com/blog/2011/08/you-are-not-alone/#comment-2121 Jacqui Wed, 31 Aug 2011 03:40:16 +0000 http://jenkrause.com/blog/?p=2108#comment-2121 Thanks for sharing Jen, and please to the writer of this "epic email," I read the whole thing, and it made me remember how I felt when I was at that point with my son. I felt every little emotion that you described. My best advice to you is that you aren't alone, others have braved this road before you, you will have difficult days, but you will also have some of the greatest accomplishments and feelings of pride you will ever experience. Yes, my child has apraxia, and yes, it can be a challenging road, but I can say with 100% certainty that I wouldn't change a thing. I have learned so much, met so many wonderful people, and my son is going to be OK. I learned how to not take things for granted, to rejoice in achievements because he had to work for them, I learned about perseverance, and I learned that my child is absolutely perfect in every little way....apraxia or not. Your child is perfect too. (And so is Luke!!!). All the best to you and your son! Thanks for sharing Jen, and please to the writer of this “epic email,” I read the whole thing, and it made me remember how I felt when I was at that point with my son. I felt every little emotion that you described. My best advice to you is that you aren’t alone, others have braved this road before you, you will have difficult days, but you will also have some of the greatest accomplishments and feelings of pride you will ever experience. Yes, my child has apraxia, and yes, it can be a challenging road, but I can say with 100% certainty that I wouldn’t change a thing. I have learned so much, met so many wonderful people, and my son is going to be OK. I learned how to not take things for granted, to rejoice in achievements because he had to work for them, I learned about perseverance, and I learned that my child is absolutely perfect in every little way….apraxia or not. Your child is perfect too. (And so is Luke!!!). All the best to you and your son!

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