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

Thursday, January 9, 2014

New things

Lately, just when I get settled into a routine, everything gets thrown into the air again. This change is a good change though. A day or two before school resumed, both for us and for our school district, it just felt like time to put Harris in school. There wasn't anything in particular that precipitated a change. It just seemed right. There are so many urgent needs in our home that Harris' consistently get met last.  I also think he needs his own space. It's very unlike me to make a last minute decision of this magnitude but I'm so glad we did. As usual, God prepared the way and rolled out the red carpet. He has a teacher that is wonderful and was embraced by his peers the second he walked in the door. Driving him to school the first morning he told me, "Mommy, I need to be in school becuase Caroline needs your help more. This way, you can help her when she needs it." Bless his heart. 

When he walked in his classroom for the first time there were a group of boys inviting him to come play and he walked right over to them and didn't even look back. He really just rolls with whatever we throw at him. He loves it. His first day he told me he had so much fun he forgot I was coming to get him. He was also so exhausted he told me he just felt like falling asleep in the bathtub. He's starting to realize it's a trade off, as homeschool things go by and he doesn't participate but he's happy where he is. 

Caroline is about to explode she wants to go so badly. We cannot enroll her because we don't have the paperwork our school system requires. The adoption process is FINALLY moving again so we may have it soon. We will cross that bridge when we get to it. God wants her home for right now or the paperwork would be here, so we'll see how it plays out. 

For now, I am happy each one seems to be in a place that optimizes their opportunity to get what they need right now. Caroline competed with Harris for my attention from the second her eyes opened each day and I'm hoping this will lessen that anxiety for her. Every infant gets one on one time to bond with their mom and she never got that with me. We both need that. Someone pointed out that there is a "cocoon" phase in adoption. The rule of thumb is that for each year of age of your child, spend that many months home with your family, as much as possible. The idea is to simplify and focus on your child and building this new family unit. We inadvertently did exactly that. School definitely takes Harris out of the mix a bit and I see the benefit of the hours they spent together as each other's most available playmate, before that opportunity passed. I'm glad we had seven months to work out this new family dynamic and equally glad Harris is now in school. I'm not sure who loves it more.

God once again sent me my verse that morning. He is faithful.

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

Friday, January 3, 2014

Bring it, 2014!

2013 was a good year but a difficult one. I'm happy to have experienced it and equally happy to be on the other side of it. The end of 2013 warmed my heart.
We did Christmas with our fellow Unicorns to kick off the holidays. I was a slacker hostess. In my defense, I worked during December and was sick the week prior to hosting. Enough excuses though, I'll do a better job next year. But slacker hostess or not, there's no way not to be uplifted by spending time with these sweet families. I am just thankful to do life with them. 

The next day, my parents rolled into town.

This is the only picture I could find of the mayhem of them unloading gifts. The kids just went back and forth toting presents in the house and Caroline couldn't really believe her eyes. My parents didn't go (completely) overboard but with 6 people there were numerous gifts to be carried. Caroline is still bowled over with the lavish attention that comes from grandparents so to add anything on top of that was blowing her mind.
My parents stayed in a hotel so we were able to take the bigger ones swimming. 

The mismatched suits and crazy hair is killing me but that's life. Sorry guys. Ain't nobody got time to brush your hair.  Harris looks like he's being photographed for receiving an award. Feet together, hands clasped, glued on smile. He's oblivious to the fact that he's wearing goggles. Awesome. Caroline looks completely confident too, in a swimsuit with crazy hair. Rock that, girlfriend, because God made you perfectly. I'd like to be that comfortable in my skin.  Walker is humoring me and ready to get in the water. 

I was looking around at the grand kids tearing into their gifts and reminded again how God prepared our family for Caroline. Our extended family has whole heartededly embraced her without question. That's a big bomb to drop on someone and just expect them to be in board. But they were. The support we've gotten from our family through this is a treasure for me. There is so much uncertainty and drama with this process that if there were also push back from our family, it would just be that much harder. Knowing they back us 100% and seeing them live that out touches my heart. 

I must have been doing more looking around and less taking pictures becuase I don't have any of them opening gifts from my parents. I have numerous pics of attempting to get each of them by the tree on Christmas Eve, though. There were mixed results.

Hayser didn't want to be photographed at that time so I made a cameo.

Walker is wearing clothes to match the other boys but received a fireman costume for Christmas. He didn't take it off for several days and I don't fight that battle. We went to a friend's house and had such a nice time. The families there we've known several years and were some of our first authentic friends in San Antonio. Wouldn't you know, both families adopted two years ago, and have been a great support system for us as we navigate this. It is another reminder that God has been equipping us for this.

I think we FINALLY figured out how to do Christmas without going over the top. It was interesting to see that they were just as excited with what they got as when they got much more. The stockings were mostly office supplies because they love them. They have been writing on index cards and using all the tape they want ever since. And they got gum and band aids because MY GOODNESS are those a hot commodity in our house!

Not kidding. All 3 of the are serious about their index cards. They've used most of the leftover wrapping paper too, wrapping presents. Whatever floats your boat, party people. Walker has wrapped so many presents for his beloved teacher. He told me, "You can take a picture of this one, if you want to." Absolutely!

When they were going through their stockings, Walker got to his box of goldfish first and just wanted to eat those. Harris couldn't stand not knowing what was in there and asked if he could go through Walker's stocking and show him everything. Walker is very agreeable when he has unlimited goldfish so he was good with that. 

Harris was a little Vanna White. "Here are your post-it's, Walker, in FOUR beautiful colors!" Everything was announced like a grand prize. Walker saw his index cards and yelled, "This is the greatest Christmas EVER!" I'm sure he was quoting something he'd seen but it was so funny. Tom and I will probably say that to each other for years.

Harris went ninja with his two candy canes.

Caroline was pumped about her bike.

Hayser isn't pictured because he needs his beauty rest and slept through all this. He stayed up till after 11 the night before assembling presents.

There was no delaying the other three. When Tom got up, walker was sleeping on the couch next to his stocking. He said he woke up at 4:11. Bless his heart, he didn't open anything or go through his stocking. He's changed so much from his birthday in September, when he carried all his gifts to his room and opened every single one.

We used the rest of the time that Tom was home to do very possible thing to do in San Antonio. Or at least it felt that way. Our babysitter told us about the mini-van express. I'd never heard of this idea but googled it and our kids loved it! It just involves making some tickets and telling your kids they're going someplace fun. Super simple and they thought it was so cool. We printed tickets, made some snacks, and then punched their ticket to ride the "mini-van express" and went to look at Christmas lights. Here tom is punching their tickets.

We went to Johnson City. 

Frankly, one of my friends was over it by the time we got there and was less than enthusiastic. That's generally how it goes and we have avoided doing things becuase he has a hard time with new experiences. However, we decided that we really need to make some memories as a family of six, and with two six year olds that will remember these things, so we did it anyway. The other kids thought it was awesome and there were parts of it all enjoyed. There were also parts where I was glad we were 60 miles from home and no one knew us. But we got through it and it was worth it.

We did a few other things while tom was home.

The classiest thing happened after Christmas. Harris and Caroline were saddened that we didn't have lights on our house. I have reiterated that outside lights are NOT my job and to talk to daddy. They expressed their sadness so this is what he did.

You are seeing lights strung on our trampoline, through the trees and wrapped around the play set. I left the house for ONE hour and this is what happened.
They think it's fantastic.

I am excited to see what 2014 has in store!

18 “Forget the former things;
    do not dwell on the past.
19 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 43:18-19