68 Things to Know About Autism

I just came across this article called "68 things to know about autism." I read through each one and think that I agree with all 68. The Huffington Post surveyed parents about what autism is and what it is not. Their answers are truthful, genuine, and real-life. As we continue to advocate for autism in the month of April and throughout the year, I encourage you to read these 68 "things." 

68 Things About Autism

Stimming Explained

One of the most noticeable symptoms/behaviors of autistic children is "stimming." This short video does a good job explaining why autistic individuals self stimulate and offers at least one idea about modifying that behavior.
Stimming Explained

Bradley has a tendency to self stimulate by flapping his arms and standing on his tippy toes when he is excited. In the past I have placed my hands on his hands to make him stop. Then I realized that he was doing this behavior because he was excited.  I want Bradley to be happy and to share his happiness, but also want to prevent any hurt feelings he may have if he is ever ridiculed for his stimming.

One day while Bradley was watching TV, flapping his hands, and standing on his tippy toes I asked, "Bradley- are you really happy right now?" He said "yes." It made me realize that I was telling him that it was wrong to celebrate his happiness. Now I try to model socially acceptable ways to display happiness: clapping, fist pump in the air, verbally expressing happiness, or thumbs up (which Bradley has really taken to). I am thankful for his happiness and love to see his adorable smile

Bradley told me he was very happy with his new Thomas the Train toy he got for his 6th birthday

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.

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 

An Encouraging Weekend

I had the pleasure to spend some time with my dear cousin, Kristin, this weekend. Kristin and I are close in age and I always enjoyed spending time with her as a kid when I would visit my dad, who lived about 2 hours away. Today we're both married, working moms who have experienced our own personal challenges and blessings in life, yet remain connected as best we can. We probably get to see each other (and each other's kids) about 3-4 times a year because of work, weekend scheduling issues, and the many activities our kids are involved in. Prior to Memorial Day Weekend, I saw Kristin and her kids around Thanksgiving/ Christmas time, so about 5-6 months have passed since we've had time together.  

As always, Kristin and I had a great time catching up about our lives.  What was extra special about our visit was that Kristin told me how much improvement she noticed in Bradley's speech, interaction, and behavior. I know Bradley is making progress and thank God daily for the blessing of progress and one more day with Bradley. But I have to admit... It is incredibly encouraging to have others share their observations of progress with you. Parents of autistic children will tell you that we all have good days, great days, not so great days, and pretty bad days. Sometimes we perceive our children as progressing, plateauing, and unfortunately at times regressing.  Hearing others' observation of progress, improvement, and growth in your child gives you the energy, motivation, and patience for those not so good days.

Kristin told me she could understand everything Bradley was saying- audible/understandable speech has really never been at 100% for people outside of my husband and me. This was super exciting for me to hear!

Kristin has an indoor dog- a rather large and energetic indoor dog that really likes kids and is quite playful with Kristin's 2 year old son. Bradley really, REALLY doesn't like strange dogs. Once Brad is around a dog for a few minutes he usually is less upset, but stays pretty hyper-vigilant about the dog's whereabouts and clearly exhibits anxiety when he's around the dog or even anticipating being near the dog. So the large indoor dog freaked Bradley out a little, but by the end of the day Kristin talked Brad in to walking the dog and holding the leash as we went for a walk around the neighborhood. That was great! That IS a big deal!!! 

Bradley usually associative plays (may play around other kids, but doesn't completely interact with them), but for some activities he cooperatively played with his 7 year old cousin, Jaxson. Brad and Jax played with Nerf guns (plastic guns with foam "bullets") together by taking turns shooting each other, which was super fun to watch!  At night Kristin caught the two boys laying on one of the kid's bed, watching a movie together. It was super sweet!

I am so thankful for weekends like these filled with family, great times, and reassurance that I'm helping Bradley become the best Bradley he can be.