Thursday, January 16, 2014

Yet another new journey.

Walker was diagnosed with autism. Before you read any farther, know that this is a HUGE relief! We've been looking for answers to know how to help him and we are on the way to getting them now. This is good news for our family. 

It seems silly now but know of my biggest fears before I became a mom is that my child would have autism. I was terrified of that. Also of SIDS, for some reason, but once the baby hit four months I let go of that worry and endlessly looked at eye contact and social milestones. 

That was with Harris. I relaxed by baby #2 and wasn't as concerned. I wrote off every abnormality with the reassurance that all babies are different. You can't compare kids. So and so's child didn't do this till they were 2, it's fine, and so on. While those things may be true, it is also true that developmental milestones are there for a reason and consistenly being behind the curve is indicative of an issue. 
I am blessed with many friends with young children. I saw child after child younger than Walker surpass his abilities in many ways. Every time I tried to raise the issue with his pediatrician, I was shut down with the same platitudes I listed above. I didn't push back and insist that someone listen. I just put my head down, left feeling like a failure, and tried to figure out a different way to parent that didn't involve Walker screaming and hitting from sunup to sundown.  God put my friend Amanda in my life for many reasons but one of them is her special education background. If anyone knows how to help autistic kids navigate life, it's her. She made us a visual schedule and it changed our life. That sounds melodramatic but it is true. Even our babysitter discusses how much it changed life with Walker. We could transistion from one thing to another without an epic meltdown. Life was starting to feel slightly more hopeful.

The pediatrician we made the appt with last January couldn't see us until October. That's not a typo, it was a 10 month wait. But she is thorough and it was worth the wait. His diagnostic report was 20 pages. He went through hours of testing, I had a 2 hour interview and there were pages of questions to be answered by his teacher. We had to videotape him during a play date. This pediatrician looked at him and his behavior from every angle and saw things I didn't know to even to look for. She matched up how his behavior met the diagnostic criteria for autism in chart, so we could very clearly see what autism is and why that label is appropriate for him. 

Here is part of our story I want to share becuase I think it's important. With the need for referrals to specialists, it's hard to get your child looked at by an expert in a particular field if a general practitioner doesn't share your concern. But they don't know your child and it's important to keep going when you know in your gut that things aren't as they should be. To get a referral we had to basically make a stink and insist that we needed one.  The man was almost rolling his eyes writing it. I'm not sharing that to be hateful but to encourage anyone else if they are going through something along these lines. Specialists are specialists for a reason and a primary care doctor can't be expected to know the signs of everything. That's not their job. The first appt we had with developmental pediatrician she saw things in him no one else ever paid attention to. He was chewing a pen, licking the table, and sitting on the floor squinting at the wheels of a train rolling. Just focused on the wheels and nothing else. He didn't look her in the eye nor did he try to engage me the entire 90 minutes we were in the exam room. Once the train was removed from the room he just built the exact same block structure repeatedly. Those are all things that are normal for him, yet every person I went to for help told me he was fine. Over a two year span, numerous pediatricians and all three school therapists/psychologists told me they saw no issues. The specialist said the phrase for kids like Walker is that people who don't know autism as well are "blinded by their strengths." He has many strengths and when alone with adults, he's a rock star. He's cute, he's charming, and spins a fantasy world that looks creative and quirky. She further explained that adults do not cause him anxiety because they can be relied upon not to disrupt his world in ways that children do. That explains so much. You can visibly see him start to unravel the more kids that get added in the mix. If Hayes, the most unpredictable member of the household, even steps a toe in his room Walker comes unglued. I told someone who loves me very much that it looked like Walker would be diagnosed with autism. He was surprised and asked if I had ever actually SEEN a child with autism. He meant no harm. Walker doesn't act like Rainman. But his challenges are nonetheless significant though they are not as obvious. 

My bible study this week talked about God's timing. If he had been diagnosed last year at this time I would have been devastated. I think I might have thought certain things were unattainable for him. He has made such strides in one year that it's unbelievable. God changed him. The most major difference is that he wants to interact with us now and before he just didn't. The things Hayes does at this age remind me that Walker didn't do those things. He didn't show me toys, bring books, want to bake, or seek interaction in any way. I had to teach him how to hug me. He would just stand there if I hugged him, stiff. I had to say, "Put your Walker Goolsby arms around my neck, now squeeeeeeeeeze tight!" Those things shouldn't have to be taught. But now, he wants to be in the mix. He is always asking me to come play with him or to sit by him. He often wants to participate in something with Harris and Caroline. He speaks in complete sentences. He shows kindess to other kids. He shows love to those close to him. It just looks different for him than for other kids and that's ok. His heart is coming through and it's so special to watch him blossom. Just today, Tom and I were marveling at a new sweet thing Walker does. He is more in this world all the time. Before he just was not present! I used to say it was like talking to the air because he had no cognition.  It wasn't intellect; it was a lack of connection to the world around him.  He has made unbelievable progress. Truly unbelievable. This time last year he did not answer yer/no questions. He only repeated the last few words you said, if anything. I picked him up from school the other day and his teacher asked him what they would do on Friday. He proudly told me, "HIBERNATION!" He's going to be fine. However, we pursued a diagnosis because it opens doors for him to get help.

Life is harder for him. That is a fact. We celebrate victories we would never have noticed and we strategize ways to do things that we never thought were even "things." That's ok. I am NOT praying for Walker's healing. He does not need to be "fixed." I am glad he has a diagnosis because he needs extra help learning how to meet his needs and navigate life but he's not broken. He is made uniquely for a purpose and he has already touched lives with his story. If Walker weren't Walker, I'm not sure we would have a chance at parenting Caroline in the way that she needs. Before Walker, we didn't understand how anxiety and other underlying factors can impact behaviors. We didn't know that punitive punishment is spitting in the wind when you're dealing with a child that is overstimulated by their environment. We were clueless. We were selfish. There are so many things I've learned from him. 

He's brave.  When he is stressed, whatever thing he is fixated on right then becomes more central to him. Right now. It's post-it's. I had to leave all 4 with a babysitter the other afternoon, which I rarely do that time of day.  It's just too much chaos without someone that is used to enforcing our routine. However, it was unavoidable. I came back and here's the first thing I saw.

That was the only batch I took a picture of but there were post it's all over our house. Poor little guy was freaking out and trying to calm himself down with something he felt to be safe. He was trying his hardest. His reaction to leaving the house sometimes looks like defiance but he's really just scared. He's come so far. He was getting nervous waiting to pick up Harris at school the other day. That place is basically 500 kids talking at once and going in all directions so I don't blame him, but he held it together. He let me pick him up and tickle kiss his neck and he just hung in there. It want long ago that would have caused a total meltdown. I see him trying his best and am not always sure how to help him.

 I wrote a blog post here about God changing Walker and all about God's timing in it. CS Lewis said, "God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains." We've heard Him shouting through our journey with this and have seen Him go ahead of us and provide in awesome ways. I would have never been so grateful for these provisions if it weren't so clear that they were beyond our capabilities. While he still has autism, he is unrecognizable from the child that he was. God changed him and there is no doubt on that. 

I could not be prouder of my sweet little boy. He's precious and he's funny and he's as unique as he can be.  He was carrying a "baby" around today (a folded up piece of paper). He tried to pick activities the baby might enjoy and would put the baby gently in a comfortable position to view whatever scheme Walker had cooked up to do with the baby.  Yesterday, he was a pirate that threw things at sharks in the water from his pirate ship (playset).  When he would hit a shark (a random spot of grass) he would be as delighted as if it were Christmas morning. His delight brightens up our home and you cannot help but smile when he is beaming. 

Life is a new adventure each day and his enthusiasm for whatever he's interested in right then is contagious. He had his whole preschool class making maps at one point. He got on a kick of wrapping presents and had he, Harris, Caroline, and two 7 yr olds sitting down wrapping presents too. He livens up a room, for sure.

Tonight, when I was putting him to bed, he put a hand on either side of my face and rubbed my nose with his nose, then kissed my forehead and told me he loves me. His struggles make his sweetness even sweeter and he melts my heart daily. I love being Walker Goolsby's mommy!

"See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland."
Isaiah 43:19


  1. Oh my sista, this is amazing. I know it took your whole heart to write all of this about our sweet boy and you told it beautifully. Thank you for sharing with all of us. Love you, Walker and all of my Goolsby's! :)

  2. Beautiful story, thank you for sharing!