Friday, June 12, 2009


So is life! When our kids are born we see the future in our mind's eye. From first steps, loose tooth's, the first day of school and high school graduation. We worry about health and what kind of job they will have and who they will marry. Their lives are clean slates for them to write their own story, and we teach them and direct them to find the best chapters. But it does not always go so smoothly. I find my self hitting bump after bump and falling in holes.

D has NLD, non verbal learning disorder. That is what it says on paper. In actuality they say he is developmentally delayed, un-specified type also.But they do not want to label him that! Why would they want to!(Its on the Autistic spectrum) He might actually get the services he needs! My two year struggle to at least get him diagnosed NLD, well they admitted he probably would have benefited from more early intervention. But how can you tell with a child that young they say! I knew at 3 something was left of center, but I am only the mom! So what is NLD, I will tell you:

NLD is characterized by poor visual, spatial, and organizational skills, poor moor performance and difficulty recognizing and processing nonverbal cues- body language, facial expression and the nuances of conversation. Kids are often misdiagnosed with ADD. (which D was)

D has no concept of deception, is literal minded and naive. He has poor safety awareness and can be easily led by older children. ( all things that have me in a state of constant vigilance over him and his surroundings and actions) He has trouble making and maintaining friendships and has poor self esteem and anxiety. He can be verbally inappropriate without knowing it. Along with this he has trouble with fecal incontinence. He does not seem to know when he needs to go and will put it off until he goes in his pants. ( which to me points to bigger problems) Which yesterday led to teasing and taunts by older kids, which led to his behavior issues and increased sadness.

But he is also loving, caring, loves animals, loves to help, has good empathy, and asks constant questions about faith and God. I love him dearly and will do anything to get him the help he deserves. Last night I sat and researched online until I could no longer sit up. When The final IEP plan comes to me for next year I will not sign it until I add more intense social skill help and OT work and still will not sign it until they agree. I will talk to "DR. Rocky" tomorrow and see where he recommends I go from here. Someone needs to know the answer. You can not tell me "you have a long road ahead of you" and walk away! I f I could I would quit my job and stay home full time to advocate for him and home school them. I worry about how he will go on in school, and worry about older kids influencing him because he has not got a clue about trickery! I will devote even more of my life to the boys!!

And my hubby, he says "don't worry"! That is his answer for everything, he does not know what to say!!! So I will do it all alone, I can not just sit back and not worry!!!

So that is where I stand, at the shore of a great big ocean. Rising and falling tides of emotion and pain and sometimes a beautiful sunset mixed in. Rays of hope and light to break through the clouds! I prayed last night for God to teach me how to help him, not for him to resolve the situation, but to help me through it. To walk with me on that shore!

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