Oh Max..

April 3, 2014

This is a day Josh and I will never forget! It changed us.

It was the day this sweet boy was diagnosed with Autism. How fitting that it was also national autism awareness month. 

(10.20.14 First day of preschool) 

It's taken me a year to be able to tell our story and express my feelings. There was also this motherly instinct, especially in the beginning, of wanting to protect him and for people not to look at him differently. He is different and unique and one of a kind, as we all are. It's what makes him Max and oh how I love him! My perspective is gradually changing and people are so kind. 

We're all learning and growing together!

Since this is our family journal, I want to remember all the details of how it came about. So here we go! We were living in Boise at the time and Josh had just accepted the job here in Texas where he planned to begin in May. Along with all the stress that come with a big move and a new beginning...there were some concerns for Max. When he was around 18 months old there were some simple things he did like every other toddler..he waved, said 'bye', 'mom' and even 'Teegan' (or so it sounded!) but that gradually disappeared. We always played the -oh he's a boy- card and just assumed his speech would come a little later. 

We later began to notice that he was in his own..but very happy..little world. He wandered around the house not really playing or interacting, just wandering. He lost it and sobbed when people unexpectedly came to our house. It was hard for him. His eye contact wasn't great and I remember one specific morning where he was sitting on the living room floor with his back faced towards us. Josh was leaving for work and tried to get his attention. He wouldn't respond to his name. Didn't even turn his head to acknowledge him. Josh and I had a feeling that something was going on. When your child begins to miss milestones it is a huge worry! 

I am the worrier in our family...especially when it concerns our little ones. I think it's also common for mom's to worry in a way that dad's can't truly understand....as much as they try. I remember one night I just had a sick feeling in my gut. Teegan called me in his room to lay with him at bedtime and as I crawled into his bed, Max climbed out of his crib (because they were sharing a room) and came and laid on my chest. As I snuggled my boys, his hair tickled my nose. Teegan had primary songs playing softly on his cd player. I had this calming feeling come over me that everything was going to be ok. It was just what my heart needed.

We got speech therapy going right away. A therapist came once a week for several months. He was picking up on words here and there. I was so incredibly happy to hear them! He said words like 'cup' 'ball' 'apple' and even 'helicop' (helicopter) for heaven sakes..yet "dad" has never been in his vocabulary!

I also made an appointment with an occupational therapist. She was at my home for an hour and a half asking me all kinds of questions about Max and some of his characteristics. As I answered she sat there and nodded her head over and over like she knew exactly what I was going to say. If I can remember right we had some kind of ranking system with scenarios and when we were done she said that he most likely has Sensory Processing Disorder (SPD). I was relieved to be headed in the right direction and have some answers. I remember saying a little prayer of gratitude when she left.  She continued to come once a month to "play" with Max. 

They suggested that we get his hearing checked, because it's always good to know for sure if that's an issue or not. We made an appointment and the boy did fabulous! I was so happy to know that he could at least hear. While I was at their office they referred me to Neurobehavioral Health for an evaluation and they sent me out the door with a pamphlet. As I got home I was reading some of the things they test for. One of which was Autism Spectrum Disorder. It had a list of characteristics and Max certainly had most of them. This was a scare to me, but I was still optimistic that there was a chance that he didn't fall under this category. 

So the morning of our appointment came and I knew we had a long day ahead of us...since it was like a 5 hour evaluation. I made sure Max had a good nights rest and made his very favorite breakfast...eggs and toast and we were off. I was so glad that he was in a chipper mood because I wanted them to see his happy side..and I somehow wanted the results to show that he was fine if I'm being honest. After filling out a heap of paperwork in the waiting room, we were called back. Everyone in the office was so wonderful. They were sweet and playful with him. He loved all the attention from the sweet ladies who strapped him in a high chair with lots of toys. They did all sorts of testing with his social, motor, communication, and cognitive skills. They gave him simple commands..asking him to point to certain pictures and feeding the baby a bottle. He also did mirror play and stacked blocks..his very favorite! After we were all done, they told us we could leave for an hour and come back for results.

So McDonalds for lunch it was with my cute little date!

Afterwards, we went back for some news. It was just the news we weren't wanting! 

Yes..he does in fact land on the spectrum, which she pointed out, on the higher functioning side. She showed me his scores and a graph, gave me some contacts and we talked for awhile. I honestly don't remember a word of it! This girl who we spent the last few hours with and who was reading the results was probably in her late 20's. Her hair was really short because she had cancer and finished chemo. (Somehow this came out.) She was so happy and sweet. As she was talking to me, I was just thinking...Man, life sure gives us curve balls sometimes. 

It can be hard...but things could always be worse. 

On our way out they offered me a piece of chocolate, like that would somehow make things better. It was a nice gesture though and I would never turn down chocolate. 

I waited until we got home for the waterworks and once I started I couldn't stop. I was on and off all day long! So many thoughts and feelings going through me. My first thoughts were selfish. I felt self pity..thinking it would be a hard long road. 

Then I thought about Max. What did this mean for him? What kind of a life will he live? Will he make friends who understand him? Will he feel like an outsider? Will he serve a mission? Go to college? Get married? These thoughts were heartbreaking. 

After I talked to Josh on the phone, I put Max down for a nap, kids came home from school off the bus, and I began making chicken noodle soup for dinner. I did my best to not let my tears fall into the pot...extra salty soup for dinner. No thanks! Of course when you get news like this or in any time of need, I instinctively sent some texts to my mom. I didn't think i'd even be able to talk to her. I would just sob. I expressed to her how heavy my heart felt and that I was scared. I wish I would have written down her sweet words. I can just remember it was so comforting to know that she trusts me as a mom. She is wonderful, supportive, and always there when I need her. She wished she could be with us to give lots of hugs. It's amazing..that even as an adult sometimes all I need is my mom and for her to say all will be alright. Josh came home and I very much appreciated his reassuring hugs. He is a wonderful dad and I feel more confident having him by my side. 

As time has gone on..things have gotten easier. It was a hard pill to swallow. For the most part I feel upbeat and hopeful, but then there are days that are hard or I start looking at long term uncertainties and feel defeated and worried. It has been such a learning process for us. I just do my best to focus on the here and now and it makes it easier. I've also learned to let go of some of my expectations. The progress is slow. The day to day changes are hard to see but when I look back on the year, it makes me thrilled to see how far he has come. I am just so anxious for his speech to develop. I want to have little conversations with my buddy and know what he's thinking and feeling.  

Some mentionable moments were on Mother's day 2014..he walked around the house pulling on my skirt saying "mom". Music to my ears! Also when we were all driving in the car on our way back from Josh's grandparents house, he said "mom" and "dad" very clearly. Josh and I got wide eyed and were shocked. The stars aligned that day! 

My testimony has sure been strengthened throughout this process. I have felt many times how deeply our Father in heaven loves Max and myself. There have been prayers answered and some very sweet tender mercies that are too personal to share openly. I have learned that we have been lead to exactly where we are now. I have no doubt about it. Max is in a preschool specifically for Autistic and speech delayed kiddos and I am over the moon about his teacher. She has taught this program in Utah and Arizona. One day she told me that they are leaps and bounds ahead here in Texas. It dawned on me that we aren't here just for work, but we were lead here for Max. That makes everything worth it! 

Another experience I had was at church, several months ago. I was standing outside of the nursery room listening to Max struggle. A member of the bishopric came and had a talk with me about a calling and that Max was my most important calling right now. He told me about his special needs sister and the blessings it brought to their family. How in the world did he know to tell me exactly what I needed to hear? He and I were both in tears..which then led to me crying in the bathroom stall because I couldn't get it together. Just a couple of nights before this, I had turned to the internet reading up on Autism and then went to youtube. Oh my...I learned to never do that again! Big mistake. It really spooked me and I went to bed with a big lump in my throat. So the fact that this sweet reassurance came to me a couple of days after I struggled was so touching.  

I have faith in the Lord and in His timing. I'm so incredibly grateful for this special boy who has already blessed all of our lives in so many ways! He is pure joy. We have a lot to learn from him. 

No one will ever love him more than we do.

Love this saying!

We all were jumping and clapping and squeezing his guts when he first counted to 10 and the other day when he said, "here ya go". We live for those little victories! 

And this is his bus driver who he is now in love with.

On this particular day as he was walking to the steps to get off, he paused and just looked up at her. She picked him up assuming he wanted the steering wheel. He wrapped his arms around her and gave her a tight long hug. They sat there cheek to cheek for a couple of minutes. It made her and I get teary. This is now part of the everyday routine. I don't know her personally, or whether she has kids or not, but I can tell it means something to both her and Max. She said it makes her day every time.

One day I was having lunch with my neighbor, Ali and we were talking about him. She has a special interest in him because she teaches autistic kids. She has been a great resource and a huge blessing! I was telling her that since Max's diagnosis I have heard of so many others who are going through the same thing. You know when something specific happens to you and then you feel like you hear about it everywhere? 

She said "I think it's God's way of telling you you're not alone in this." Wow..that really rang true. 

In honors of National Autism Awareness Month last month..this is what Josh and I were surprised to see. Light it up blue! Our neighbor switched out our light bulb. It was so touching. Love our sweet new friends and this awesome support group we have!