Autism Song

This morning I was scrolling through Facebook when I saw this link for a new song called "We'll Get By." After reading the short article and listening to the song, I was crying in my office. It's a beautiful song with an important perspective, the child's. I needed to hear it today. Bradley has been doing a little more "movie talking" lately than he had been doing. I've been working on a blog to explain the "movie talk" and will hopefully publish it later tonight or tomorrow. Anyway, I feel like I have been a little tough on him for something he perhaps has a hard time controlling.

Please take time to listen to this song. I will personally be writing the Johnny Orr Band to thank them for doing this. It reminded me that Bradley knows we love him and that he loves us too. He's doing a great job trying to be the best Bradley he can be.

Click Here to listen to We'll Get By

We Wish You a Merry Christmas

This Christmas was THE BEST! Bradley was REALLY in the Christmas spirit and enjoyed this year so much!!! His interest in Christmas began in November when he saw a remote controlled, robot spider at Radio Shack and decided that is what he wanted for Christmas.

Bradley and Max saw Santa many times this Christmas season. Each Santa visit Bradley was joyful, polite, and eager to share his robot spider wish with Mr. Claus. Max was not as happy to see Santa...

   

Every Christmas movie that came on was an instant favorite. We watched Rudolph, the original animated Grinch, the Jim Carey remake of How the Grinch Stole Christmas, the Will Ferrell movie Elf, Frosty the Snowman, Here Comes Santa Claus, Mickey's Twice Upon a Christmas (this was Bradley's favorite), and An Elf's Story (the DVD that accompanies the Elf on a Shelf book and doll). Bradley loved our elf on a shelf and named him Jimmy (very similar to the dvd's main character, Chippy). Each morning Brad enjoyed searching for where Jimmy was camped out for the day. If you haven't heard of the Elf on a Shelf, check out: http://www.elfontheshelf.com/

We had fun anticipating Christmas Day. The boys enjoyed their daily piece of chocolate from their advent calendars. We looked at Christmas lights as a family. Bradley played the role of a shepherd in our church's nativity story and really enjoyed the candle light ceremony at church.

Christmas Day finally came and the boys were very excited to see what Santa brought!

The boys were blessed to spend lots of time with family and were showered with presents

Firework Duet

Bradley REALLY likes Katy Perry's song, Firework. He heard it on the movie, Madagascar 3 and very quickly learned the lyrics and melody. We sing it occasionally in the car and at home. I love the message within the lyrics and always felt like it was Bradley's anthem.

http://mashable.com/2012/10/19/katy-perry-firework-autism-jodi-dipiazza/

My friend, Alexis, sent me this link today and I absolutely loved seeing and hearing this girl with autism sing Firework with Katy Perry. I bawled my eyes out in my office, but they were tears of joy for the beautiful growth of Jodi DiPiazza, the amazing 11-year old girl who is sharing her voice through music.

Dan Marino Talks About Early Intervention

Former Miami Dolphin Quarterback, Dan Marino, talks in a 2005 interview about his son, Micheal's journey on the autism spectrum. Micheal and his family attribute early intervention to Micheal's successful progress. Research continues to conclude that early intervention DOES help children on the spectrum progress toward developmental goals.

http://youtu.be/el1kQ-3Dln4

Speaking from experience, the fear of the unknown can prevent many people from seeking assessment and treatment for their children on the autism spectrum. What will this diagnosis mean for my child and family? Will my child "catch up" to his/her peers? What can I do to help them? What could have contributed to their autism? Will my child be able to lead a "normal" adult life? These questions and many more go through parents' minds and may delay the initiation of assessment or acceptance of an ASD diagnosis.

If you believe your child or a child you know may be on the spectrum, please seek intervention as early as possible. The benefit of early intervention far exceeds the uncertainty of the future. 

"See, the Sovereign Lord comes with power, and he rules with a mighty arm. See, his reward is with him, and his recompense accompanies him. He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. (Isaiah 40:10, 11 NIV)"

I have only recently grasped the extent of God's sovereignty. God knows all, has GREAT plans and the mighty power to make them happen, and is in charge of EVERYTHING. Isaiah 40:11 promises us that God will lead us as parents. However, we must seek God first and pray for wisdom of His desire and the understanding of His will for our children. 

When the uncertain future for your child scares you, take comfort in God's sovereignty. Pray for guidance. Study His word. Seek support from others. Email me! I will pray for you and with you. Watch and be amazed at how God will use the experience to change your heart and bring glory to Him.

We Went on a Walk

Whenever we have an upcoming event or fun activity I always debate about when and how to tell Bradley. He still has difficulty understanding the concept of time, so if I tell him too early Bradley is disappointed that we aren't going to the party or event that very minute. If I tell him too late, I miss the opportunity to explain to Bradley where we are going, what we are doing, and who we'll be with. I have found that some planning and discussion of the event helps Bradley feel more comfortable when we arrive at where ever we are going and have a better time during the experience.

About three weeks before the Houston "Walk Now for Autism Speaks" I decided to officially join my friend, Lori's fundraising team, "Amazing Him: Team Erik." Lori invited me to join the team earlier, but the hustle and bustle of the beginning of the school semester had my attention. Once we were team members and fundraisers I was overjoyed with the financial and emotional support friends and family gave. 

I started telling Bradley about the walk about a week before the event date. I told him we'd be "going on a walk for autism with a bunch of people who are special like you" and that he'd make a new friend named Erik. I also explained to Bradley that there would be many people at the walk and that some of them liked the same things he did. Bradley was growing increasingly excited each day that we talked about it, but was most excited to meet his new friend Erik.

The day of the walk finally arrived and the boys and I headed for Reliant Stadium with our Red Rider Wagon in tow. When we arrived I unloaded the wagon and then loaded Max and our bags of supplies and snacks back into the wagon. We found our group and after a short transitional adjustment for Bradley we settled in. Amazing Him: Team Erik was comprised of loving, approachable, and sweet adults and kids who automatically welcomed Bradley upon our arrival. However, Bradley wasn't real sure about what was going on at first and was somewhat negative about changing his shirt and putting on the team shirt that everyone was wearing. 

It is hard for me to understand how Bradley can go from being super excited and talking about this walk for a week, to not wanting to be there and going home instead. This happens so frequently when we do something new. My guess is that Bradley has a specific expectation of what he thinks is going to happen and when reality doesn't equate to that expectation, he panics. While I don't think he means to be rude, Bradley's attitude quickly shifts and he says, "No thanks... I want to go home... I don't want to do this." Needless to say, this is embarrassing for me and then we have to spend several minutes readjusting Bradley's attitude and getting him focused on the current event or task.

Once Bradley was on track to have fun then he and Erik were peas and carrots. Erik was super sweet to Bradley and they played well together.

 

Before we knew it we were about to move forward to the stage for the opening ceremonies. Lori led us in a beautiful group prayer that really resonated with me. In her prayer she thanked God for choosing her and her husband to be Erik's parents. I feel the same way with Bradley. It is an amazing blessing to be Bradley's Mom (and Max's mom too).

Walking up to the starting line we were about 50 yards away and listening to the emcee announce sponsors, donors, leading fundraisers, and special thank yous. Happy and relaxed Bradley and Max soon turned in to impatient, cranky, and frustrated little boys. The announcements lasted at least 20 minutes and the boys only became hotter, sweatier, and increasingly more annoyed. Bradley wanted to start walking, but we were surrounded by hundreds of people with very little wiggle room. Max was miserable. He was hot, didn't want to sit in the wagon, didn't want to be held, and didn't want to be told what to do. Bradley kept urging us to walk, "Come on Mom. Let's go. Move. Let's go." But it wasn't time to go and no matter how patiently I explained this to Bradley he just didn't understand.

After what felt like an eternity of waiting, the official start began and we were all excited. However, we weren't really moving. We literally inched our way up to the start line a mere one step at a time. The starting archway was narrow and the crowd was wide. It was wonderful to have such an amazing turnout for the event, but getting everyone through the narrow arch was a headache. At this point Max was screaming, literally screaming in my face. Max was screaming at the top of his lungs. He did NOT want to be held. Max wanted to run around the crowd of hundreds. Sorry Max- not an option. Max screamed in protest. I whispered into Max's ear, "It's okay Max. Mama's here. We're moving now. Look! We're going under some balloons soon." Nope- didn't work. Max continued to scream.

As we inched our way closer I tried to stay positive.I was sweating my face off. Sweet Erik noticed I was sweating and demonstrated how to cool myself off by quickly pulling at the front of my shirt. There was no cooling off for me. It was hot and the stress of Max screaming in my ear, Bradley's impatience, hundreds of people around me, the fear of losing track of one of my kids, people pushing by us, inching our way forward, being cut off by other impatient walkers, and the Texas sun were too much for me to keep my composure. On the verge of tears I began to complain. "Don't these organizers realize that autistic kids have a hard time waiting? What are they thinking? I am absolutely miserable! Uggh! This is not fun." I said these things out loud. Strangers heard and looked at me with pity.

We finally made our way through the inflatable, blue archway and I felt defeated. I felt horrible that I was complaining during this time of empowerment for so many. I continued to fight back tears but felt so alone. How strange... I felt alone in a sea of hundreds of other people. I didn't see anyone else struggling like me. I saw tons of teams helping with the kids. I saw fathers there with their children. My husband was bow hunting for deer. Someone asked where my brother was. He was bow hunting too. I felt alone. I felt incredibly frustrated. I wanted to cry.

We caught up with the rest of our team, but I couldn't stop to wait for the remainder of the team members. Bradley and Max were finally happy that we were moving and I didn't want to stop. We had about 2 miles to walk around the stadium parking lot and my arms were already shaking from caring 30 pound Max and pulling 50 pound Bradley in the wagon uphill. Thankfully several of our team members offered to help me with the boys and I finally accepted help from Lori's brother, Adrian. He is a childhood friend of my brother, so I've known Adrian for 20 years or more. Adrian is young and athletic so I didn't feel too guilty about him pulling Bradley in the wagon. I immediately felt relief. I still regretted my bad attitude earlier and hoped that no one in our team had noticed. Now I was enjoying the walk and enjoying my conversation with Adrian.

Throughout the course my stress went away and my heart filled with joy. Bradley was having a blast! He was smiling at, waving to, and hugging strangers along the course. Volunteers were cheering for Bradley as we passed and complimenting his Angry Birds rain boots. I really enjoyed visiting with Adrian and Lori and I shared our experiences with raising the sons we love on the autism spectrum. We talked about the tough times and the progress our kids have made. Somewhere along the way Max fell asleep in my arms and we moved him to the wagon and Bradley marched along side us.

As we approached the end of the course Bradley recognized that we were almost finished with the walk. He became very excited when he saw the pedestrian bridge we crossed at the beginning of the course. Bradley's excitement turned in to a jog toward the bridge, so I ran after him since Adrian was comfortable pulling sleeping Max in the wagon. The closer we got to the finish line the happier Bradley became. "Look Mom! We're almost there!" Bradley cheered as we walked back through the blue arch, "Hooray! We did it! Hooray!" I was so happy and proud of Bradley's fantastic attitude and joy.

Bradley wanted to play on one of the inflatable slides in the parking lot so after we found Adrian we wheeled sleeping Max toward Bradley's slide of choice and stood in line. Again- autistic kids and lines don't exactly mesh at times. Many of the kids waiting didn't want to wait but their parents stood strong and made them. I was very proud of Bradley's willingness to wait his turn. Bradley's turn was up next and it began to rain. After sweating for over an hour, the cool rain was a welcomed blessing. Kids crawled out of the netted slide and left with their parents. I asked if we could still let Bradley jump and play in the inflatable playground and the volunteers agreed. Bradley jumped and slid and had fun while the rain came down. Surprisingly, Max continued to sleep through the rain.

We could see more rain clouds approaching and hurried back to our team's spot to gather our things. Thanks to the help of Lori and her husband we were able to gather up our many bags very quickly and head toward the car. Adrian helped with the wagon again and we found my vehicle among the sea of cars.

Before the end of the walk I realized that the walk experience was incredibly significant to me because it was so congruent with how my life has been with Bradley's autism spectrum diagnosis. In the beginning (before diagnosis) I was frustrated with the lack of progress Bradley was making in his speech. People were telling me something was wrong but I wasn't handling it well. I felt heavy burdened by this uncertainty. I'm sure I complained quite a bit. I was anxious and scared of losing my child. I lacked confidence in his future... our future. I was rude to diagnosticians and service providers who were merely trying to help. I resisted diagnosis because I feared a label. I envied other families who looked like they had it together. I felt lost.

As we walked through the archway of diagnosis I began to feel some relief, but I was still panicked. We had such a long journey to go and I was already physically and emotionally exhausted. How am I going to do this alone? People are offering to help, but I don't know them. I can't expect them to carry my burden. Gosh this is so hard! Why don't I have the support I need? Well, maybe I do have support. Yes- I do have people wanting to help me. Maybe not who I expected, but they genuinely want to help. Yes! Thank you for your help. (Don't cry). Thank you for your help! You promise to help me through all of this, right? 'Til the end? Please?

Somewhere in the midst of the walk of treatment I am gaining confidence. I can do this. I can be the mom Bradley needs. I can be there for Bradley AND for Max. I can get us through this. I am not alone. There are people here with me and for me. They "get" me. They understand Bradley. They love Bradley. I love Bradley even more. Bradley is happy and Max is relaxed. I have friends who understand. I have friends who understand me even when I don't talk. They love me for who I am and know that my focus HAS to be on Bradley if I'm going to be the mother God desires me to be for Bradley and Max.

As we approach the finish line Bradley is happy. Max is relaxed. My friends and supporters are behind me. My burdens are distant. My God is providing me with the love, peace, and relief that I need. Bradley is overjoyed and smiling. Bradley eagerly runs toward our future with his hand in mine. I love Bradley even more.

For the rest of that day Bradley told everyone, and I mean EVERYONE, we met that he "went on a walk today." He shared his experience with strangers at Chick-Fil-A, police officers we met, and our family members later that day and weekend. Bradley loved our walk and asked if we could come back again. I promised Bradley we would and I can't wait to keep that promise next year and walk with Max and Bradley again.

Jesus is Helping Him

Friday, June 7 was a day I was both looking forward to and dreading. On that day Bradley had his tonsils and adenoids removed at Texas Children's Hospital, West Campus. The surgery is routine with minimal anticipated complications. Children who have their tonsils and adenoids removed typically recover quickly and don't mind the ice cream and Popsicle post-surgery diet. I knew the surgery would help Bradley, but my concern was Bradley's sensitivity to pain and extreme fear of doctors.

To prepare for the surgery I talked to friends whose children also had their tonsils and adenoids removed. I had many friends and family praying for the surgery. I ordered children's books about tonsillectomies and doctor's visits. Bradley liked the Care Bears book the most, but also enjoyed the Mercer Mayer one too.

I also did some Internet research about preparing children with autism for surgery. One of the websites I stumbled across was a mom's blog about prepping her son for surgery by creating a personalized book. This is her link with good ideas and resources: http://www.extremeparenthood.com/2009/08/preparing-autistic-child-for.html?m=1

I knew that this was an awesome idea that would really help Bradley, so I made him his own surgery book. I used Microsoft PowerPoint and actual pictures of Bradley, his doctor, and the hospital we would be at. Texas Children's has a slideshow on their website that includes a story of the girl in the pictures I used. I have included pictures of Bradley's book below. I wanted to get it printed and home to Bradley quickly, so I didn't plan the binding of the book well. I printed these pages out and ended up stapling them together like a bound book. I also kept the language simple and familiar to Bradley when I could, even if it meant having some weak grammar choices (i.e. "scared" rather than "afraid").

                     

                   

                  

                   

                   

We read the books I found on Amazon and Bradley's personalized book every day for a week. Bradley was resistant to reading them at first, because he put the pieces together and realized I was preparing him for his own surgery. After a few days though, Bradley selected these hospital related books when I asked him to choose a book for story time.

The day of the surgery arrived and my sister Jordan, Bradley, and I left our home and headed to the hospital bright and early. I was nervous about Bradley not being able to have anything to eat or drink prior to surgery, but thankfully he did not ask for either. I prepared for resistance when we arrived at the hospital, but Bradley willingly walked in and made it through our first 2 check points without getting anxious. We had many people praying for the surgery and I know God helped prepare Bradley that morning.  I was wearing a Christian t-shirt that day and was happy when a nurse asked me where I got it.

This is the back of the shirt I wore to surgery. You can check out these cute shirts at www.woggleonline.com

Bradley played with toys and remained relaxed until it was time to get his vitals checked. He was a bit nervous when we walked back to an exam room to have his vitals assessed. Height and weight measurements were pretty uneventful, but the oximeter and blood pressure cuff were sources of anxiety. Thankfully the Child Life Specialist, Katy, had a bag full of toys that kept Bradley distracted as best she could.

Bradley's new friend, Katy. She is a child life specialist at TX Children's. Katy did a wonderful job at entertaining, distracting, and comforting Bradley!!!

After several rounds of Angry Birds with Katy it was time for Bradley to go back to surgery.  I was able to go back with him to anesthesiology and stay with him until he fell asleep.  Bradley DID NOT want to go back to the Operating Room and became incredibly upset when we walked in to the OR.  At this point I was wearing an enormous, white space suit that the nurses joked I could borrow to paint my house. I carried a frantic Bradley in my arms. We attempted to have him inhale the cotton candy flavored anesthesia from the mask, but Bradley was not having it.  Thankfully all of the nurses assured me this was a typical response and each nurse held one of Bradley's limbs while I hugged him tight.  The anesthesiologist helped Bradley inhale the gas despite Bradley's numerous attempts to kick him.  I later apologized profusely for the few blows Brad managed to land on the anesthesiologist, but he promised me it was "part of the territory" and that the older kids kicked harder. After about a minute of whispering reassuring messages of "I love you" and "I'll be praying for you" Bradley finally fell asleep.  It was so strange to see him go from screaming to sleeping almost instantly.  

I kissed Bradley and entered the family waiting area where I prayed and waited.  I was told the surgery would last about 40 minutes, but after only 15 minutes or so I saw Dr. Vilela walking toward me and smiling. He told me the surgery went great and that Bradley's tonsils were "enormous." I hugged Dr. Vilela and was overjoyed. He shared the post op instructions with me and I nodded and smiled, getting about 80% of what he said. Thankfully all of that info was on a take home sheet. 

After a few quick texts to update family and friends I was able to sit in the recovery area and wait for Bradley to wake. I specifically requested to be there before he woke up, because I knew he would do better if I was there.  Most of the time parents are kept in the waiting area until children wake up and are tended to by the nurses.  Some children wake from tonsil and adenoid removal in extreme pain and discomfort, feeling like they are choking, very upset, and sometimes combative. I prepared myself for this. I expected Bradley to wake up hysterical and struggling to breathe.

Bradley sleeping in recovery

When Bradley woke from the anesthesia I was ready to go into comforting Mom mode and do whatever it took to bring peace to him.  Bradley coughed a few times and slowly opened his eyes. I told him I was there with him, that everything was okay, that his throat might hurt a little, but that Dr. Vilela said it was going to be all better.  Bradley opened his eyes, looked at me, and then looked at a younger boy in the recovery room who was not quite awake yet. While looking at the boy Bradley clearly said, "Jesus is helping him." I fought back tears of shock and awe as I asked Bradley to repeat what he had said. Bradley looked straight at my eyes and said, "Jesus is helping that boy." The little boy's parents looked my way and asked how my son was doing. I told them he was doing well and shared what Bradley told me.  Both of the parents smiled and said, "Yes He is. Jesus is helping him."  Bradley went back to sleep for a little bit and talked just a little in between sips of a Kool-Aid watermelon flavored juice pouch.  Another boy entered recovery and was wheeled in to the left of Bradley's bed.  When he began to wake he was very combative, uncomfortable, and clearly in pain. Bradley looked at him and said, "Mom- Jesus is helping him." The nurses overheard him as Bradley continued to tell me "Jesus is helping him. Jesus is helping him!" I have no idea how I fought back the tears of pure joy that were swelling in the corner of my eyes, but somehow I managed to turn them into a huge smile. Bradley said he wanted to pray for the boy so we prayed and after a few minutes of the nurses tending to the boy, he calmed down and rested. I was a proud Momma and made sure everyone within earshot knew that my son was praying for these boys and taking comfort in Jesus.

An hour later we were able to leave the hospital and head home to rest and recover. On the way home Bradley was VERY talkative. We drove by extensive road constructive at the Katy Freeway and Hwy 99 and Bradley looked up at the partially completed overpass and said, "I don't think they're EVER gonna finish that bridge." My sister and I laughed hysterically and Bradley continued to make interesting observations on the way home. I noticed Bradley was talking more frequently and his speech was more fluid.  At first I thought Brad's increased language flow might be a temporary result of his pain medication (Lortab Oral) making him a little loopy.  What was amazing though, is that the increased expressive speech did not subside after Bradley no longer needed the pain medication.  I am in awe at the improvement Bradley is making daily. Streams of sentences are coming from my son that didn't happen this easily before his surgery.  I stopped trying to figure out if it was the experience of the surgery, the anesthesia he had, the pain medication he took, or maybe even the absence of his tonsils and adenoids.  I waited over 2 weeks to complete this blog post because I wanted to make sure I wasn't getting ahead of myself in what I know is true today.  God has been working on Bradley since the beginning. "For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made;  your works are wonderful,  I know that full well." (Psalm 139:13-14) 

God has given me moments of Bradley's life to see the miracles He is working in my son. Bradley told me Jesus was helping the boys around him in the recovery room. We have taught Bradley that God helps those who seek Him, but what if Bradley actually saw Jesus..?  Before you think I'm crazy, read "Heaven is for Real." The book chronicles Colton Burpo's near death experience, vision of Heaven, and how his parents learned about the experience.
http://www.nytimes.com/2011/03/12/books/heaven-is-for-real-is-publishing-phenomenon.html?_r=0

God allowed 4 year old Colton Burpo a glimpse of Heaven as doctors worked on Colton in a medical emergency. God could have easily allowed Bradley to see Jesus helping the children in the hospital in an effort to comfort him. My son went to sleep struggling, fighting us, panicking as I told him I loved him and was praying for him and that God would be caring for him.  Bradley woke up calm, with very little discomfort. He never complained in recovery.  This amazing post-surgery progress is FOR SURE one of God's miracles He has allowed me to be a part of and He deserves all of the glory, all of the credit, and all of the praise. My prayers for the last two and a half weeks have been prayers of praise and thankfulness for God's awesome, mighty love and power. Please join me in thanking God for providing peace for Bradley and us in this process and his continual hand in the progress He is making in both Bradley and me.

           

Great Aunt Sarah bought Bradley 2 Iron Man toys for being so brave during his surgery. He loved them both! When he realized his younger brother, Max, wanted to play with one of the Iron Men he quickly realized "Big Iron Man" was Bradley's and "Baby Iron Man" was for Baby Max.  In return, Max was extra kind and loving to his big brother as he recovered.

                                                

At exactly 2 weeks post surgery we celebrated at Chuck E Cheese and it was everything Bradley had anticipated the Chuck E. Cheese experience to be. It also happened to be my husband's birthday, so it was a wonderful day of family fun!