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!

"He doesn't have a hearing problem"

When Bradley's speech wasn't developing properly I had a few people suggest that his hearing may be impaired. I said the same thing over and over for a while, "He doesn't have a hearing problem. Bradley can hear the beginning of his favorite television show (Miss Spider and Her Sunny Patch Friends) from across the house."

  

Bradley would hear the show beginning and excitedly run into the room. If I dropped a pan and Bradley would turn in the direction of the loud noise.  I continued to tell myself that there wasn't anything wrong with Bradley's hearing until I had a dream one night.  I had  been praying about how to help Bradley and I had a dream that Bradley had tubes put in his ears and that almost immediately his hearing and speech improved exponentially. As a therapist I don't put too much stock in dreams, but this dream was SO real. I knew I needed to act on it quickly.

After some online research I decided I wanted to take Bradley to Children's ENT of Houston. http://www.childrensenthouston.com/  We made an appointment with Dr. Ronald Vilela and the practice's audiologist.  http://www.childrensenthouston.com/vilela  Dr. Vilela diagnosed Brad with long-standing fluid in his ears. The audiologist tested Bradley's hearing and confirmed fluid was affecting his hearing.  What we hypothesized was that because the fluid appeared to be in his ears for a while, it likely impaired his speech development. I told Dr. Vilela about my dream and asked him if he was a Christian. When he said yes and didn't seem to think my dream was weird, I knew the surgery was right for Bradley.

Bradley could hear, but the quality of the sound was impaired and he was probably hearing a muffled version of speech and sound. Think about what it sounds like when you are underwater or have your index fingers in both of your ears. If someone presents new/novel sound stimuli, you might catch some of it and your brain will try to fill in missing parts. However, if articulation and clarity are compromised when a young child is learning speech, they don't have the learned speech sounds for their brain to fill in the missing parts.

Playing on hay bales at the J.D. Hudgins Ranch at age 3

At age 3 years 2 months, Dr. Vilela with Children's ENT of Houston surgically inserted tubes into both of Bradley's ears to drain the long-standing fluid. Both Texas Children's Hospital and Dr. Vilela did an amazing job trying to help minimize Bradley's hospital anxiety.

   

Bradley prior to surgery for bilateral tube placement at Texas Children's Hospital, Downtown location

After the quick surgery I was walking into recovery to see Bradley and I could him him crying out, "Mommy! Mommy!" Prior to the surgery Bradley called me "Mom" and sometimes "Mop," but I don't think he had ever called me Mommy before. On the way home from the hospital it was obvious that Bradley was hearing differently. It was like he was experiencing a new world and I could see him reacting to sounds he had not heard clearly before. I hoped that Bradley would magically begin speaking with perfect speech, but it didn't exactly turn out like my dream. Bradley's speech slowly improved in time thanks to guidance and assistance from Mr. Clint, his speech therapist.  I wish we would have had Bradley's hearing checked sooner and perhaps had the surgery earlier in his life. My husband and I both agreed that we would be more proactive with our second son, Max, and after Max had several ear infections and standing fluid we had Max's ear tubes surgically inserted at age 10 months.

                           

 Max preparing for ear tube placement with Dr. Vilela at Texas Children's West Campus

Hospital Anxiety

Bradley has been fearful of doctors since age 2 or 3. I'm not sure what prompted his hospital anxiety, but going to check-ups (even when Bradley didn't get immunizations) use to be incredibly stressful!!! Bradley would scream, kick, cry, drool excessively, and yell while I did whatever I could to calm him. By the time we'd leave the clinic or doctor's office I would be a sweaty mess in need of reapplication of deodorant. Parenting tip- if you are a sweaty woman like me, carry at least two sticks of deodorant with you at all times!

Where did this anxiety come from?

Maybe it's genetic- my father really doesn't like hospitals, but he tolerated them enough to visit me for both deliveries of his grandkids and when I had an appendectomy at age 12. Maybe I influenced it some how. At Bradley's 2 day check up he was jaundice and our pediatrician told me Bradley may need to be admitted back into the hospital to treat it with special lights. I immediately started crying and did not want my baby to be away from me. I know Bradley can't remember that- he was probably asleep at the time, but I've wondered if my little breakdown affected him in some way. As he grew older, Bradley was not happy at all about going to the doctor. 

2 day old Bradley- you can see the yellow tinge of jaundice in his face

Bradley also appears to have extreme sensitivity to anticipated/perceived pain. He expects procedures to be painful, and therefor perceives pain during non-painful procedures and/or has anxiety related to anticipated pain. When I clip Bradley's fingernails 9 times out of 10 he adamantly protests and cries until I clip a few nails to remind him that it doesn't hurt. We rationalize that clipping his nails and toenails doesn't hurt and that Mommy would never do anything to hurt him. Even though nail clipping time is less dramatic than it use to be, it's still no walk in the park. This hypersensitivity is likely related to his PDD-NOS, specifically the sensation and perception differences experienced by ASD individuals compared to non-autistic individuals.

Incidents that haven't helped the anxiety

At Bradley's 4 year check up the nurse was training a new nurse who was suppose to give Bradley his booster shots in each thigh. I was 9 months pregnant with our son, Max, and my job was to hold Brad's arms down. Four-year-olds are a LOT stronger than they look! With one swift move Bradley jerked free from my hold and grabbed the syringe from "Newbie Nurse," scratching his upper thigh with the needle, breaking the skin, and screaming the entire time. Newbie Nurse just looked at me, mortified. I'm pretty sure I yelled at her to "hurry up and do something" as she squeezed the vaccine into the air and then slowly prepped a new needle. More Experienced Nurse jumped in and quickly gave Bradley his shots. It was horribly traumatic for Bradley who already feared hospitals and for his very pregnant and hormonal mother!

At his 5 year check-up Bradley's doctor promised no vaccines (phew!) but ordered a "routine" Complete Blood Count (are you kidding me?). Long story short- I also had Max with me for his one year check-up, the phlebotomist couldn't collect the blood from Bradley fast enough, Bradley apparently bleeds very slowly, I had a screaming kid in my face (Bradley, not Max), Brad's blood clotted in vile, Phlebotomist says, "sorry- I need to prick another finger" while both of my children scream and cry, Phlebotomist retrieves what we think is a good sample, a few days later the second blood sample returns with abnormalities, doctor wants another CBC because he suspects lab error, more screaming and drooling a few days later, phlebotomist gets a good sample, CBC comes back normal). When I got the call about the abnormalities I was walking in to teach my class, so it was difficult to compose myself after your pediatrician a nurse says your child has abnormal bloodwork, but the doctor doesn't want to say what the abnormalities are. Part of me was worried, but a part of me wondered if Bradley's PDD-NOS could be explained by these mysterious blood abnormalities and then possibly treated and cured... Even with that thought, I was happy to hear the second CBC was perfect.

How do I help manage Bradley's hospital anxiety?

No matter what I have tried, Bradley hates every minute of the doctor's appointment up until the moment we are leaving. Then he is everyone's best friend and is incredibly gracious to the entire staff as we are walking out the door. Now that he's a little older I try my best to talk Bradley through it by explaining procedures before hand, although not too far in advance because Bradley thinks very immediately. If I tell him he has an upcoming doctor's appointment, he thinks I mean that same day. We talk about what to expect and I always promise something fun if he does well at the appointment (an ice cream cone, a TV show or movie he wants to watch). If I keep reminding Bradley of the incentive I promised we can make it through the doctor's visit, leaving with less tears, sweat, and exhaustion.

Bradley celebrating his 4th birthday at day care

Bradley and Max celebrating their 5th and 1st birthdays with a fruit rainbow

Speech Delay: Post-Diagnosis

After Bradley's first ARD (at age 3) he began receiving speech therapy from Mr. Clint. I had heard wonderful things about Clint and was excited to begin to see, to actually see (and hear) progress in Bradley's speech.  Bradley met with Clint 1-2 times a week from March through May, but when the school year ended for summer break, Bradley's services were "suspended" (for lack of better terms) because he was making progress and not regressing.  As a college instructor, I totally understand how awesome, amazing, and crucial summer break is for educators and school officials.  On the other hand, we were making progress and I was afraid it would end.  After all, it took Bradley a few weeks to warm up to Clint and I didn't want to have to rebuild  rapport in September when services resumed.

I expressed my concerns with Clint and he shared lots of ideas with me that gave me hope about what I could do for Bradley's speech, as his parent.  Here are some things that Clint suggested I try, that really did help Bradley.  I have to be honest, I hoped for results a lot sooner than I actually noticed improvement, but I stuck with our plan and in (God's) time, Bradley's speech has noticeably improved and is approaching near 100% intelligibility.  Parents- hang in there. I wasn't sure about what progress we'd see in Bradley, but we didn't give up and I don't want you to give up either.  Talk to your child's speech therapist about these intervention ideas:

Practical Speech Therapy Treatment Techniques
1. Model speech for your child in first person. At age 3 Bradley would express needs and desires in one word requests.  Sometimes the word was not clear to strangers, but as parents we knew what Bradley wanted. Here's an example: "whaahhher" was once "water." When Bradley would request water we would model what he should be saying/asking, "Mom, I want a drink of water please." You want to model language in first person, as if you are speaking what your child should be speaking.  We modeled speech for any and every other desire and need Bradley expressed.  When Bradley would get excited about something, like a train on the train tracks we passed while traveling down the road, we would model what we anticipated Bradley would want to say.  "Wow! Look at that train! That's a diesel train."  For months and months and months and months we narrated and commented and modeled and talked and talked and talked the way we wanted to hear Bradley communicate with us.  I had parents in my junior college class with older children with high functioning autism tell me that they did this for their children and that it really did work for them.  You would think that I'd be able to pin point the exact day I finally got the full sentence request from Bradley, but the truth is that Bradley's speech slowly progressed and there was gradual improvement that eventually led to Bradley being able to effectively communicate those needs clearly, meaningfully, and politely.  Now when I ask Bradley what he would like to drink with his meal I clearly hear, "I want a drink of water please" without any modeling from us.

2. Encourage speech through limited options.  We all like choices. We enjoy things even more when we feel like we are in control of the decisions being made.  We like rewards.  Presenting limited options does all of these things as well as encourages speech.  Here's an example, "Bradley- what would you like for breakfast: waffles or pancakes?"  It is important to wait and pause for the child to respond.  If they do not respond you can present the question again.  In the beginning of speech therapy, a communication book may be helpful to offer a visual cue for the choices presented.  *Check out my previous post about the communication book I created for Bradley.  It's important to make this fun for the child while still providing limits and boundaries. Obviously we don't want to give our children french fries for breakfast just because they verbalize that desire.  However, we want to be sure to use an upbeat tone and offer verbal and non-verbal praise when our child responds in a desirable way. Once Bradley responded I would articulate his answer back and cheerfully talk about it with verbal praise. "Pancakes. I want pancakes please mom. Yes sir Bradley. You did a great job asking for pancakes so let's make some pancakes for you." Yes- you start to feel a little silly (or even crazy) answering your own questions, but this really can help.

3. Borrow speech therapy material from your child's therapist.  Mr. Clint was kind enough to loan me decks of speech articulation cards to work on at home.  Bradley wasn't always willing to practice the cards or worksheets, but with adequate reinforcement ("Bradley- do you want to watch television? Then we need to work on these flashcards and do a good job first.")  we were more successful.

4. Encourage and model appropriate non-verbal, expressive communication.  One of the most common social/communication challenges seen in individuals with Autism Spectrum Disorders is poor eye contact.  At age 3 Bradley was making very little eye contact with non-familiar people and inconsistent eye contact with me.  I made it my mission that summer to really work on Bradley's non-verbal communication, specifically his eye contact.  When we would interact I would kindly, verbally request for Bradley to look at me when he spoke to me ("Bradley. Bradley- look at Mommy's eyes please.").  Sometimes I would gently tilt Brad's head up so that his eyes would meet my eyes.  This needs to be done with finesse, because many ASD children have anxiety and poor eye contact might be a coping mechanism.  Another intervention technique to try is encouraging your child to play with other children. I know this may not sound like treatment, but many ASD kids need encouragement to play with children and really engage their peers during playtime.  I set up play dates with my friends who had children close in Bradley's age.  When none of my friends were available for a play date, I took Bradley to public places that were popular for kids his age to try to get him to interact with new children.  By the end of the summer I noticed significant improvement in Bradley's eye contact and interaction with others.

Some of his favorite places include local parks, the Stomping Grounds, and Jumpin Jacks. Check out their websites:
Stomping Grounds: http://stompinggroundsplayland.com/
Jumpin Jacks: http://www.jumpinjacks.org/jumpin_jacks_web_site_001.htm

          

Bradley at age 3 years 3 months at a local park             

5. There's an app for that.  Yes- there are speech therapy apps for your smart phone or tablet.  If your child is tech savvy like Bradley is, they probably swipe your smart phone or tablet every chance they get.  Bradley is now better at Angry Birds than I ever could be.  With fun apps available, speech therapy apps may not seem so cool.  However, we make it a point to do our speech therapy work first and then reward with a train game or another approved activity.

My favorite Speech app is called Articulation Station. We have used it for almost two years now and Bradley really has fun with the flashcards. He calls it "the honey bee game," because a honey bee is the main picture of the app.  The downside to the app is that you have to "purchase" additional sounds, but I think the purchases are worth it. You truly get what you pay for and the free speech therapy apps on iTunes are not as good as this app.  For more information about what the app offers check out:
Articulation Station:  https://itunes.apple.com/us/app/articulation-station/id467415882?mt=8

We also like the "See Touch Learn" app.  It too requires in-app purchases to expand the pool of words, but I think it too is worth the cost.  One word of caution- Bradley is a bit sensory sensitive and in the past he would be anxious about getting an incorrect answer because the app will produce a buzzer sound for incorrect answers.  The buzzer is not terribly loud, but for whatever reason Bradley does not like it.  Still to this day, he is a little anxious about the buzzer, but it actually offers another great teaching opportunity. We work on the speech and comprehension aspect of this app, along with auditory desensitization.
See Touch Learn: https://itunes.apple.com/us/app/see.touch.learn./id406826506?mt=8

Parents Flash Cards is an app that includes learning lessons and quizzes.  It offers verbal and visual positive feedback periodically throughout the lesson and quiz.
Parents Flash Cards: https://itunes.apple.com/us/app/flash-cards-by-parents-magazine/id390789905?mt=8

Fun & Educational Apps we enjoy
Railroad Lite (Bradley likes the Sing Along version of this app): https://itunes.apple.com/us/app/working-on-railroad-train/id431192905?mt=8
Wheels on the Bus: https://itunes.apple.com/us/app/wheels-on-bus-all-in-one-educational/id543545550?mt=8
Amazing Breaker is good for hand eye coordination: https://itunes.apple.com/us/app/amazing-breaker/id421088863?mt=8
Talking Tom: https://play.google.com/store/apps/details?id=com.outfit7.talkingtom&hl=en