November 24, 2009
I find my self a bit confused. I started blogging to relate and talk to other people about their childrens struggles with Apraxia. It started as a way to express my feelings, get out my emotions, tell our story and try to help other people. Now I am stumped because I wonder just how honest I can be. I do not blog to put on a show. Can I continue to pour out my emotions about how this feels? Right now it does not feel so good. I don’t feel so positive. I feel sad. Sad because I can not fix this for my son. It breaks my heart into a million pieces to watch him studder and grope for words when he’s really worked up about something. It feels terrible to hold him in my arms while he melts because he understands every word I am saying but I have no idea what he is saying back(and he knows it). Things the average three year old does not even give a second thought about. Wonderful carefree words just slide out of the mouth. For Luke and other children with Apraxia this is the greatest struggle. How frustrating this must feel. I see some changes happening with Luke. I know it is not him, it is his struggle that is changing him. It’s much easier to just tell a friendly face “GO!” then to explain how school was. It’s easier to just scream “NO!” then to tell your sister you want her to please stop because she’s bothering you. I have spent the day replaying in my mind, the little quivering voice who told me last night, ” I talk, but I no talk.” Luke feels no pressure with me, most everyone else equals PRESSURE! Questions require an answer. Answers are hard to come up with. This is a tricky fight. Luke has really come a long way, no doubt about that. But there are still those days and those times that are really rough. He is getting older now, he is understanding so much more. We have a long road ahead of us. I guess sometimes I just want to take off the gloves and get out of the fight.
November 29th, 2009 at 9:48 am
Jen, you are not alone feeling like this. Every one of us going through this has our ups and downs. Some days you feel like you can take on the world, and some days you feel so defeated. We will keep fighting for our kids because that is the only choice we have. Luke will get past this, you will survive, and it will make you stronger in the process!
Love to you both!
November 30th, 2009 at 4:00 am
Jenny,
I understand your struggle. It is so hard as a mom to watch our children struggle and to know that there is nothing we can do about it.You are a wonderful mom (it is very evident in your writing), and Luke knows this. He knows that you are his biggest advocate, and he knows that he is loved! With your blog, I am sure you have touched more lives than you know. I think you are honest about your struggles and the emotions that follow. Remember that you will hit rough patches along your journey. I think that part of the reason your writing has such an impact is becaue you are honest about your journey- your fears and your struggles, but you also are honest about the joy that comes from having Luke in your life. I am sure I can speak for numerous others when I say that reading your blog is refreshing because it is real and it is honest, and it helps others connect with someone who is battling the same type of circumstances. You are amazing!
November 30th, 2009 at 8:55 am
Jen, just remember that Luke has never been another child. He has never experienced being able to use his voice to fully communicate. He is experiencing your love, your patience, his learning, his own trying, etc.., in a way that is totally unique to LUKE! He will mirror some of the sadness and stress you are feeling. Just have hope that he will eventually come through this. Odds are certainly is his favor!!! I met a woman last week, for example, who’s son with verbal apraxia only said 2 words when he was 3. He is now 6 and is doing great and only has a few consonants to refine. My own Nathan is saying a log but hardly any of it is understandable. Just a year ago all he said was “ooof”. Now, he says many, many things. Just this week he has been whispering the words I read to him in storytime. He softly whispered the last phrase of most off the sentences in the book. Of course, it is not clear, but it has the general sound and cadence of what I am reading. This is amazing progress for Nathan. I can only imagine him talking quite well in a few years if he continutes trying so hard and progressing like this.
I am not saying that my heart is not sad sometimes. It is. But I just assume he will talk well some day in the future. Luke will too.
We are going to start more formal signing with Nathan. He is 3yrs3months and he does have a lot he would like to express. It this is going to take a long time I want him to have a way to speak to me with his hands. At least he will have me (and other signers) to fully understand him. I am guessing that he will be verbal enough at some point that we won’t have to continue or eventually rely on the signing. But it is a vote of confidence in Nathan to expect he will learn to sign and then learn to speak. He is so smart and so is Luke. I can just see it.
I hope you do not stop blogging about Luke. There are not many people out there doing what you are doing and it is very brave and valuable.
- Jenny
November 30th, 2009 at 9:02 pm
Jen,
I refer parents of students I work with to your site. Your site helps them see they are not alone..and that progress happens on its own time line. Your blog has helped many. I love the videos. I love the games and ideas you have posted. I love reading of Luke’s successes! I hope you keep blogging.
Lisa (SLP)
December 1st, 2009 at 1:13 pm
I guess we just hit a rough patch in the road. I am not seeing regression just some frustration. I am very thankful for all your encouraging words! Means the world to me. I’m feeling better. I went for a long hike yesterday. I didn’t want to look to far ahead out of fear I would quit before I even got to my goal. So I just looked at what was right in front of me and took one step at a time. Before I knew I had reached the top! I figure it’s exactly the way I have to see this situation. Just one foot in front of the other. Sometimes the trail was smooth sometimes it was washed out and rocky. I ran into an old friend on the way. He lost his leg in an accident a few years ago. He was on the same trail and he was trekking on a titanium leg and was carrying two huge boulders just for the challenge. Yeah, that’s the spirit I want! Thanks for your encouragement!!! You are my friends that show up on the trail. Love, Jen