Parenting a child with special needs, but without a special needs diagnosis is like traveling without a road map. So says guest blogger, Nickie White. She’s the parent of four children, one of whom is not growing. In today’s post, Nickie describes how she copes without the direction a diagnosis provides.

Parenting Without a Special Needs Diagnosis: Where’s My Map?

Words can be discouraging. Words like no progress, malnourished, and at some point we started moving backwards. I heard things that I wasn’t prepared to hear. My son isn’t just not gaining weight; he isn’t making any physical change at all. He had steadily been making growth in height. (Though when I say growth in height I mean millimeters. Just enough to be noticed on an exact measurement chart.)

They weighed him twice. Measured his height three times. Wrapped a tape measure around his head three times.

There it was in front of my face on four different curve charts; he isn’t even maintaining, much less growing. The doctor suggested that he is not absorbing anything, that it is quite possible he is burning fat to stay functioning but is not able to absorb calories at any point. Tests indicate his body is pushing non-stop.

Many words. No answers.

There are very obvious tests that will come back an easy fix—like a thyroid test. And we had more abdominal ultrasounds to look for a tumor. The doctor said, “This shouldn’t be here. This could be swelling…but it’s not right either way. Are we feeding the tumor or the boy?”

NOTHING shook me that day.

I took notes, I splashed in a public bathroom for twenty minutes with my naked toddler trying to get a urine sample, had to discipline my four-year-old who lost his mind in the hospital… all before 10 AM.

Somehow I left with a perfect peace. And then.

It wasn’t until later, when I began to let my family in on the purpose of the ultrasound and ask for prayer, that it hit me. Satan then set the bats free. Ideas began to hit the walls of my empty mind and stir my emotions. I prayed and exchanged Scripture with my supporters. Then, the same scripture came from two different people. Two different states. Two different translations. One God SCREAMING AT ME.

When you call on me, when you come and pray to me, I’ll listen.” (Jeremiah 29:12)

While I was texting the scripture from Jeremiah 29:11 to my dad—For I know the plans I have for you—he sent Jeremiah 29:12-13. Within moments, God grabbed me in the middle of what felt like the loneliest place I had ever been. The entire passage reads, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come to pray to me and I will listen to you. You will seek me and find me when you seek with all your heart. “ (Jeremiah 29:11-13)

When we started this journey I knew that God was going to heal Logan.

Now I don’t know what God’s plan for our boy is. I have absolutely no idea. Whatever comes of all of this, I know that it is part of a grander plan. Clearly I am not saying we are done fighting. I know we are on the backwards slope.

My mind wonders often.

When I see my son doubled over on my bed hurting, I ask God, “Why?” I would not be honest if I told you HE replies instantly with comforting words. But how does HE answer? Through my little boy, when he asks me to snuggle him ‘til he “peels better.” Then I kiss his head that one year ago didn’t have hair, and God subtly reminds me that things are happening.  Though they may not be chartable, there are big things happening. I may never see them….

but the ways that God is working through my boy are immeasurable.

What Helps You Parent without a Special Needs Diagnosis?

Are you waiting for a special needs diagnosis for your child? How do you handle the ambiguity and lack of direction? Are there Scriptures that comfort you? Leave a comment.

Photo credit: www.freedigitalphotos.net

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