Our Journey with Aspergers

Thanksgiving 2013,  Vince (my husband) felt the Lord say that we would be celebrating Parker and his story next year. That we would be telling of God’s faithfulness. His miracles. His answering of our prayers for our sick little boy.

Vince shared this with me that Sunday in 2013, and while I trusted he heard from God, I immediately thought and said, “I’ll believe it when I see it.” In other words, “yeah, right.”

We were in distress. Our little boy Parker had gone through 2 1/2 years of constant sickness and sleeplessness. Which resulted in him throwing up everything, eating only 6 foods and elemental formula (that cost as much as a mortgage), and a huge amount of daily medicines. He had seen numerous allergists, immunologists, and gastroenterologists. He had multiple blood panels, allergy tests, and 2 scopes and biopsies on his intestines. He had whooping cough, salmonella, and hand foot and mouth (all in a 6 week span). Our doctors were baffled that every test..from immune system to GI tract came back clear. After all this time, our specialists basically told us that they could no longer help. We were lost.

In addition, there was the sleeplessness. Parker was miserable. He could not rest. He would literally scream for hours on end. Every night. And day. For over 2 1/2 years. We did not sleep. We couldn’t even sit down with him during the night. We had to walk and squeeze and stand with this screaming toddler from 2-6 am or longer almost EVERY. SINGLE. NIGHT. Even as I write this it seems unreal. Our families would take turns on “Parker watch” so we could get some rest. We kept sleep logs to give to our doctors. We were hanging by a thread. Actually that last part of the fraying thread that was rapidly disintegrating.

This is where I stood at the thanksgiving service. Not only in disbelief, but having taken offense with God. I’d prayed for healing. I’d prayed my heart out. For years. I did not like the story of the persistent widow anymore. I felt like I’d ask, seeked, and knocked until I’d bruised my hand and lost my voice. And I did loose my voice. I came to the conclusion that I could pray prayers for others. For myself. But no longer for healing for Parker. I just couldn’t bear it. But in this time, God moved.

A trusted friend gave me a message from the Lord. God had shown her a picture of me having my hands held up to heaven by my friends because I was too weak to hold them up myself. Like Moses in Exodus 17 was too weak to lift his staff, so his friends held up his arms. That is how we continued. Our family and friends carried us. Carried us to the Lord.

At this very point, right around the thanksgiving service, I sent an email late at night, in desperation, to one of the top GI hospitals in the country. I sent our sleep logs, our food journals, our plea for help. To my total and complete surprise, they called me the next day and asked us to fly in the next week. Which we later found out is completely unheard of. Patients wait six months to a year to get in to the specialist we were seeing.

This miracle of was not lost on me. I immediately dropped to my knees in tears thanking God, and felt him tell me to check the mail box. Immediately, I knew what that meant. We had been waiting for months for a substantial tax return that had been very delayed due to identity theft.

I couldn’t even handle it. No way would that check be in the mail box that would pay for our trip to Denver. On this very day. We could have received this check any day since April. I slowly walked to the mail box. And there it was. Just as God had said.
Miraculous.

In Denver, our specialist led us for the first time to pursue a neurological route in treating Parker. He felt that most of Parker’s problems were originating in the brain, not the stomach. He referred us to a neurologist, who later referred us to speech and occupational therapists, who later referred us to a developmental psychologist.

When we returned from Denver, we felt hopeful. We’d seen God move. We had a bit of a plan for the first time. But, Parker was not better and was not sleeping. We had been reading in The Journey of the father in Mark 9:24 who said, “I do believe. Help my unbelief.” This had cut straight to my heart. The girls in my c-group prayed this verse over me. And they prayed for Parker to sleep!

That very night, he slept the entire night!!! Which he had done only a few times since birth. And then he slept again,the next night. I was rejoicing. God had swooped in. He had saved us! He had healed Parker! I was telling everyone. Shouting it from the rooftops.

But…we had a horrible 3rd night. An ALL night scream session. To be honest, I felt tricked by God and I was really angry. How could he bring us this far, and then leave us?

But, true to his form, God did not leave. He moved. Slowly and perfectly. He gave me a dream to change Parker’s bed. He gave Vince wisdom about new medication. Better and better and better. We look to that c-group prayer night as a huge turning point.

God made scripture come alive. Words that I’d read many times, were seeming to break the barrier in my soul. Promises, “the Lord your God is WITH you. He is mighty to save.” (Zeph 3:17). “The Lord is close to the broken-hearted. (Ps )

God spoke to me 2 years ago, very clearly, that he was NOT going to heal Parker, but was going to use Parker’s story to change the world for the kingdom of God.

I really struggled with this. Especially because at this time, I thought Parker had a GI condition. Why would God not heal him? And then tell me he wasn’t going to?? I was really mad about this, again, to be honest. Even though I knew He had said it, I still didn’t like it.

Now looking back, 2 years almost to the month of this conversation with God, we received a diagnosis for Parker last Tuesday. Asperger’s syndrome. High functioning autism.

Most all kids with Asperger’s have a “biologically sensitive system”. Their body over reacts to everything. Heat, noise, lights, sickness, food. Food intolerances are very common in these kids, as well as prolonged insomnia. All the loose ends are tied into a nice, diagnostic bow.

While he does get lost in conversation, Parker is friendly and smart and not what I had stereotyped in my mind as Autistic. That is the interesting thing about the Autism Spectrum. It is a full spectrum. If you know one kid with Autism, you do not know the next. Vince and I got a chance to go the the state Autism conference this weekend and felt like for the first time, people understood our struggle with Parker. Things actually made sense. We had somewhere that we actually fit.

Interestingly enough, this is exactly what God said. He wasn’t going to heal Parker because this was precisely how He made him. He made him fearfully and wonderfully with Asperger’s. He made him smart and unique and passionate. He made him exactly how he wants him … to be able to change the world for The kingdom of God.

This Thanksgiving we are thankful that God is never too late. That He never left us. We are thankful for answers. Thankful that God used this time to draw us close together and close to him. Thankful that God is the same yesterday, today, and forever. Thankful that God keeps his promises. “Blessed is she that believes the promises the Lord has given to her.” Luke 1:45

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2 thoughts on “Our Journey with Aspergers

  1. Love your words intertwined with the truths and goodness of God. My Luke is also fearfully and wonderfully made with Autism. In our short journey of 3 years since his diagnosis, I have seen and felt the kingdom of God more tangibly than ever before. Love that our boys stories can and will draw people to the arms of our Father!

    Like

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