House of Krause

It was so cool, at the Apraxia conference Nancy Kaufman invited the hand full of parents that were there to join her for lunch. They had so many questions for her!  One mom even drove over two hours with her son to catch a quick minute with her. She was so gracious to take time alone and talk with her.  Nancy was kind enough to go around the table and ask each person what their child’s story was.   I didn’t have to many questions, as I feel so secure that Miss Megan (Luke’s therapist) can answer my questions just as well.  I just listened.  I found a common feeling among the parents was hurt and frustration towards the Doctors and speech paths that had missed the Apraxia diagnosis. A lot of anger towards the regional centers for not sending in the right help.  A lot of talk spent talking about the past. I love what Nancy had to say about all of that…. Your here, The time is now, there’s no going back, get over your anger, and move forward!  She’s right. Wasting time on the past is going to do no good for anyone. Especially our children. I think we really have to remember that even still today not all schools are even teaching Apraxia.  And Yes, even speech pathologist may not have ever been taught or trained in the area of Apraxia. It’s unrealistic to expect Doctors to know. This is where our part comes in, to increase awareness of Childhood Apraxia of speech. Do your own research. Take printed information into your Drs. office so they can read through it.  Be proactive as a parent. You are the one who knows your child the best. Mothers have strong instincts when they know something is not right. Don’t allow your concerns to be dismissed. Seek additional opinions. By sharing information you might be helping another child in the future. But we can’t spend time holding on to emotions from the past. There is already enough emotions to get through today!

I remember a year ago when our journey began with Luke. They handed me a sheet of paper full of words and said circle all the words your son is currently saying. I stared at the paper for 10 minutes, then I turned to Paul and said “I can’t circle any, not even one!” I stared at my sweet silent son, who’s shirt was soaking wet from all the drool. I remember wondering if I might spend the rest of my life wiping his chin, and thinking-  what if  he never talks?? Today I spent my morning playing with Luke. I realized just how far He has come.  I am so happy to report that if they put that paper in front of me today I could circle all of these:

car, open, pop, go, no, purple, yellow, cook, bow, milk, pie, tie, poo-poo, girl, boy, ball, boat, juice, tie, bath, na-na, hat, arm, He now has a verbal name for everyone in his family. I thought he may never say Ma-ma, he not only says ma-ma, but likes to call me “MOM!” Along with his words his sign language continues to grow and expand.  His shirts stay completely dry. Drooling  is a thing of the past!

Childhood Apraxia is an uphill battle…. The hill is steep….We climb slowly….and sometimes we fall backwards……but we keep moving forward everyday!  I don’t know if it’s God plan for Luke to have a full recovery from this or not. Our family will have to cross that bridge when we get there. I know a lot of you are facing very uncertain realities, I just wanted to encourage you to look forward as hard as it is, try not to look back. And I know it may be years and years away, just want to let you all know now, that the day Luke and I walk out of therapy for the last time, and the wind is to our back, there will be a huge celebration at our house, your all invited!!!!!

God Bless you and keep you in His hands! Hold on to Gods promises, He will never leave you or forsake you, He is with you to the ends of the earth. God loves the Apraxic child!  And hold to the promise that all things will be made new, and all children’s glory will be revealed in heaven! Now that’s going to be a party  I don’t want to miss! Love, Jen

If you are following this blog, I encourage you to send me a comment or just simply the name of your child, so I can add it to my Apraxia prayer list. You can be certain I will pray for your child everyday! If you’d rather send it privately you can e-mail me at roselinks@yahoo.com

This entry was posted on Tuesday, March 3rd, 2009 at 2:13 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.