Tuesday, November 7, 2017

Guest Blog by Kelly Tatera from Action Behavior Centers

Mom and Nonverbal Son with Autism Win Jimmy Fallon’s “Say Mama” Video Contest

[Guest Post for Allison Hill]

Jimmy Fallon is known to engage his fans with his video contests, and his latest contest winner brought light to a topic that deserves more attention: nonverbal autism.

The video competition challenged viewers to send in the most adorable videos of their babies saying “Mama.” Fallon and staff likely expected to receive exactly what they’d asked for, but one unlikely video submission stood out among them all: Kate Swenson and her 7-year-old son, Cooper, who has autism spectrum disorder (ASD).

In the video, Swenson explains why her son couldn’t participate in the video competition in the same way as other children, but how he is just as special.

“He loves trains. He’s smart and he’s funny and he’s loving, and Cooper is also autistic and nonverbal,” Swenson says. “I was told at a very young age that I should prepare to never hear Cooper’s voice, and that’s one of the hardest things I’ve ever had to expect.”

Swenson believes that her son’s voice would be just as sweet as any of the other babies seen in the video contest. She showcases her son’s speech device – the Proloquo2Go system for iPads from Talk to Me Technologies – and Cooper pushes a button which recites “Mama” in a computerized voice.

Being nonverbal is common among children with ASD, but it doesn’t mean the speech delay will last a lifetime. In fact, one study found that the majority of children who are nonverbal at the age of 4 go on to overcome their severe language delays.

The study looked at a sample of 535 children with ASD and categorized them into groups based on whether they had the ability to speak in only single words, small phrases, or more fluent phrases. After analyzing data on these children, the researchers found that 70 percent of the kids achieved simple phrase speech by 8 years old, and almost half of the sample (47 percent) achieved fluent speech.

For parents with a nonverbal child on the spectrum, these findings serve as a science-backed beacon of hope that they may one day hear their children communicate verbally.

Swenson’s number one goal with her video submission was to show the world a more positive side to autism. She says people often express sympathy after hearing that Cooper has autism, but she doesn’t need the sympathy. “I say, ‘No, he’s the coolest kid you will ever meet.’”

“I just really want autism to be a part of the conversation,” she says. “I want the world to see that it’s not scary and it’s not sad.”

(Please click on the infographic to get a better view)



Wednesday, September 27, 2017

Don't Hide From the World




As Jacob is growing, we are having to discover new ways to teach him, new methods for rewards and punishments and new ways to include him into everyday activities.  Jacob is silly and energetic, but he also suffers from extreme anxiety with a capital A.  This is something that I have been struggling with lately.  I’ve heard of people that have anxiety or OCD from traumatic events, but when a child who has had a typical upbringing is anxious it’s very confusing.  It’s as confusing as autism. 

Anxiety is common within the autism community.  The statistics say somewhere around 40%.  I have been doing some research in medical journals in my free time and have read several theories backed by some mainstream medical professionals.  Anxiety could be linked to his atypical sensory function, inability understanding and labeling emotions, intolerance of uncertainty (having a hard time with ambiguity), and last they are looking into the “role of the medial prefrontal cortex (mPFC) in regulating emotional response, in connection with limbic and insula-based networks, and suggest that disrupted integration in these networks underlies difficulties with habituation to strong emotional stimuli, which results in an enhanced perception of threat in many people with ASD” (South, M., & Rodgers, J. (2017). Sensory, Emotional and Cognitive Contributions to Anxiety in Autism Spectrum Disorders. Frontiers in Human Neuroscience).

All of that basically means that his anxiety likely derives from his disability and not from something bad that’s happened to him, which I already knew, but somehow it doesn’t make it any easier.  Not to mention, I don’t know how to help him.  

We recently started considering behavioral therapy techniques to help with this anxiety in public.  His clinic has already implemented treatment for his issues with wearing shorts, talking to certain kids that make him nervous, talking in certain rooms, etc.  Some people don’t realize that the reason why we often can’t take Jacob to friends’ houses is because he gets very very nervous in new places.  Sometimes the iPad will suffice, but other times his desire to run in circles, opening doors and drawers, turning on lights, and jumping on furniture in a fury is so strong that only Cret can hold him and its exhausting.  He gets nervous like this on the baseball field, too.  He loves getting on his baseball uniform and asks to go to his game, but most times he fights or screams at his buddy and tries to run off, lays on the field or in the dugout and refuses to cooperate.  It’s hard to know what to do in those situations.  I don’t want people to feel uncomfortable, but I want him to have those experiences so we can work on them.

 His therapists wanted to see this in action, so they recently came to a friend’s house to watch what he would do at a new place.  They asked me not to bring any toys or electronics and as I expected, it was wild. He ran all around and totally invaded their privacy.  I instantly regretted going there.  Both BCBAs said they had never experienced that and would have to research an intervention plan, but that ABA (behavioral intervention) was the proper method for helping him with this behavior.  I left feeling absolutely dreadful and embarrassed.  Maybe it wasn’t the biggest deal, maybe it was.  They were very gracious to me and didn't make me feel like they were upset at all.  I guess allowing people to see what we go through just felt scary.  It’s extremely humbling to allow people to have that kind of look inside autism.  Most of the time autism isn’t pretty.  It isn’t a genius child that has some amazing artistic ability.  It is repeatedly screaming, running, self-mutilating, poop-smearing, taking off clothes, rituals, etc.  In other words, it’s hard.

At church and at baseball and at friends’ houses, I sometimes find myself feeling self-pity and sadness or jealousy of “normal”.   I want to bring my kids somewhere and just sit down and relax and chat with the grown-ups, but I can’t.  But I don’t want those feelings holding me captive.  I decided to just go to Scripture again for rest and peace and guidance.  I don’t know how I am supposed to look at his anxiety.  I verbally share the Gospel with Jacob word for word.  I ask him if he wants to know about Jesus and he always responds “yes”, but quickly loses focus.  It may sound silly because he isn’t understanding speech at that level, but I know the Gospel is for him just like it is for everyone.  I sing praise songs to him and we pray together.  But yet, his anxiety is still very real.  His behaviors are very real.  We go to church and I can’t help but feel embarrassed when he disrupts service and I have to walk out.  I know other autism families feel the same, even more so.

I wanted to share what I have been reading. In Romans 15:1-2 it reads “We who are strong have an obligation to bear with the failings of the weak, and not to please ourselves. Let each of us please his neighbor for his good, to build him up.”

And Ephesians 4:15-16 says, “Rather, speaking the truth in love, we are to grow up in every way into him who is the head, into Christ, from whom the whole body, joined and held together by every joint with which it is equipped, when each part is working properly, makes the body grow so that it builds itself up in love.”

What I am praying is that the Lord will lead Cret and I in such a way that we are “working properly” or in other words seeking Him and His will in all things, so that even with our circumstances, we can help the body grow in love...so that even if Jacob is being loud and disruptive, I will know that God has a place for us there.  I pray that we can be examples of leaning on God in our utter and complete weakness.  We have no sure answers as to how to handle autism, all we can do is rely on the Father and the sufficiency of His grace despite autism.  I pray that those who encounter our “weakness” will see God’s great strength. 

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9


So if you’re anything like me and you want to curl up in a ball and never leave the house again to hide from the sometimes kind and sometimes cruel world out there… don’t hide, autism families.  Let the world see you and your child.  Allow God to use you.  Allow the world to see your weakness, the ugly, the hard, but also to see the joy you have despite those weaknesses that comes only from the Lord.  Let them see the ongoing hurts and struggles and let them see God walking you through them pointing them to Christ and future hope.  I hope that I can be more bold in this way for the Lord.

Monday, August 21, 2017

What grade is he in?


Yesterday I got the dreaded “What grade is he in” question.  

I have no idea why I wasn’t prepared for it this year.  I had to think for a second before responding and in that moment, I felt like I could just lose it.  Each year it gets a tiny bit harder to answer.  He is supposed to be starting 2nd grade tomorrow.  Instead, Jacob will be in therapy 40 hours a week learning to talk, sit still, understand questions and how to answer and so on.  No, he will not have fun programs for me to go see, he doesn’t have parties that I can attend and he will not be learning “age-appropriate” material in class.  I still can’t explain why I am not used to this truth yet.  So many families out there can relate, I’m sure.   

God has a different plan for Jacob.  His path isn’t the same as Jordan’s or Tyler’s and it isn’t the path I wanted for him.  I have to keep reminding myself, though, that it is the path that our sovereign Creator has for him and that it is good.

Time and time again I’ve been reminded in God’s word that He sees things differently than us.  He uses people in situations that aren’t so great to make his name great.  Moses with his speech impediment, the blind man that was healed to show the works of God, when expensive oil was lavished on Jesus and it was thought to be a waste until Jesus exclaimed otherwise.  I know Jacob isn’t Moses and I know our situation isn’t as grand as these, but I have hope that through our lives and Jacob’s struggle that we can make much of Jesus and that God will be glorified.

Our family story cannot even be told without telling all the miraculous ways that God has provided for us over and over, showing us that he cares deeply for us and that we have no need to worry.   Our new house selling for enough money to pay for a full year of therapy, Cret getting a job out of the blue that he hadn’t applied for with full insurance coverage, Taylor Swift donating $10,000 for our service dog, and the list goes on.  I find it fascinating that everything God has done, he has done in a way where there is no possibility that we could take credit for it.  It is ALL God’s provision.  God has allowed us to see glimpses of His purpose through our struggle when we get opportunities to share our faith and hope despite our sometimes hard situation.  God has used autism in our lives to draw our family very close to one another and to Him.  Jacob is such a blessing to us.

I just want to encourage all the autism families out there experiencing the difficult “What grade is he/she in” question this time of year. 

 It may not be the journey that you had hoped for, but God can use your family’s journey for so much more than you could’ve dreamed. 

Jacob may not be going into 2nd grade, but this past week he went canoeing, swimming in a lake, fishing, and camping.  I seriously cannot even believe the obstacles he is overcoming.  In my mind, I had all these limits placed on him, but God is crushing those limits.  Jacob is talking more than ever.  Just today he said, “Mommy, I want to play water slide please!” That’s almost a complete sentence.  I am so thankful for these milestones.  I love taking the time to sit back and watch God work in his life. 


I am looking forward to a great new year with many new milestones.  God is good.

Thursday, July 20, 2017

Clinical Trial

This summer is flying by! I have so much going on that I feel like my head is spinning.  Jacob's progress has been interesting lately.  He seems to be making more connections with us and with his brother and cousins.  When they are playing, he tries to insert himself in the middle of them sometimes.  Instead of just watching from far away, it seems like he wants to be a part of the guys, which has been pretty cool.  On the other hand, Jacob's eye tics/stimming have come back full force.  We have been tracking it for the clinic to see how often he does it.  During meal time alone he will do it 160+ times.  I collected several videos to show his pediatrician and she seemed pretty confident that it still wasn't seizures.  I wish I knew why he had such a sudden onset of the tics and why he is doing it so often. Hopefully, the clinic can address it soon.



Additionally, I had a meeting with Jacob's BCBAs regarding alternative communication devices for him.  These are apps for the ipad that help non-verbal children to communicate through clicking on text and pictures and then the app vocalizes the sentences for them.  Jacob is very smart and has proven through his work at the clinic that he knows and understands thousands of words. However, he NEVER uses speech for more than basic functional communication of his wants and needs.  In my gut, I feel like there is more in there he is trying to get out, but just can't or won't.  However, introducing communication devices isn't as easy as I thought.  

The therapists explained that Jacob has extreme anxiety and because of that he shuts down completely in certain situations, rooms, or with certain people.  They said that children with autism typically have higher anxiety, but Jacob's is something totally different.  His way to control stressful situations is to stop talking completely.  He won't even make sounds.  That makes him feel good, so it reinforces him to continue his mutism.  Today, we went to the medical center for his clinical trial and the pediatric psychiatrist agreed that it sounds like Jacob has selective mutism, but that it would be extremely difficult to find a doctor that understands both selective mutism and autism because both are very complex conditions.  If you know a doctor that can help, please email me.  I intend to start researching tomorrow but wanted to reach out to the community in case anyone else has experience.  Typical treatment is therapy, but that obviously wouldn't work for Jacob at this point.  Our conclusion from the meeting on a communication device is to try simply typing out words with Jacob in a non-stressful environment.  They were afraid that if Jacob learns that he can type instead of speak he may never speak because of his selective mutism. The idea is to make him say the words out loud if he types anything that he wants and not let him get away with only typing. Oh, how I wish I had all the answers.  It seems like the older he gets the more complicated this all is. 

About 15 weeks ago we began a clinical trial with Texas Children's Hospital to see if this new digestive enzyme would be helpful for Jacob.  It helps to breakdown proteins and for kids.  Jacob has never had digestive issues, but they are in their 3rd round of clinical trials and needed kids with and without digestive issues in the study.  Most children with autism have a hard time breaking down proteins which is why many are on special diets. The first 14 weeks were blind so we won't know if he was on the actual enzyme or the placebo.  Now, he is enrolled in the open label (he is on the enzyme for sure).  I have to collect stool samples within a 24-hour specific window every 2 weeks and organize it into tubes and pouches and packets like I am a true scientist and take it and him to the med center for a 1.5-hour exam.  If Jacob ever doubts my love I will surely remind him of this. haha We will be in the open label study for up to 3 years or until it's available to the public.  I haven't seen any major changes, but I am hopeful that it is helping his digestion. 

Last but not least, I spoke to someone from Autism Service Dogs of America today.  There is no update on our specific dog or the specific date, but please continue praying.  We are hoping for October.  I did find out that dogs naturally reduce stress and their service dogs are trained to help even more through deep pressure and comfort.  A woman here in town has a child with autism and one of their service dogs and told me that she couldn't even put into words how much the dog has helped, but it has been life changing.  I asked her if it has helped a lot with anxiety and she said that is the main thing it helps with.  I cannot wait for Jacob to experience some comfort like that.  I think it's amazing that when we applied for the program we were mostly wanting a service dog to keep Jacob safe from elopement (still an issue), but now we will also have an added help for his anxiety.  Isn't it awesome how God provided something for us that we didn't even know we would need?  

God's provision in our lives completely blows my mind.  Completely.  


Sunday, July 9, 2017

Jacob is Swimming!




The last few weeks have really taught me a lot about myself and about Jacob.  This entire swimming process has been so much different than I expected.  It has actually been a super positive and nonstressful thing.  Of course, the swim instructors and the safe facility had a lot to do with it, but I realized that I was really limiting Jacob before. 

Because Jacob has limited functional speech and a hard time being attentive, I really waited a long time to even try swim lessons.  Maybe it was my fear and anxiety or just my lack of belief, but I really waited too long to get him into swim lessons.  Cret and I had taken him to the pool, but he acted wild with us and tried to dive right in like a crazy man and it was mostly just stressful.  So instead of taking him to someone else, I think I just assumed it wasn't possible yet.  Maybe a part of me was just stressed about the entire thing.  This may sound terrible, but many little things are just so hard for him and for us.  I don't mean to say that as a complaint, but I guess sometimes I use it as an excuse not to even try at times and it's such a stupid thing for me to do. 

I didn't know how people would respond to him when he wasn't responding in the pool.  I didn't know if he would ever understand how to hold his breath.  I didn't know if the instructor would be able to catch Jacob if he took off sprinting to the other side of the pool and jumped in before fully learning to swim (true story and he did catch him mid-air).  After all, we have worked on it for over a year and been unsuccessful with even small steps.  
  
But what I realized is that Jacob didn't need to be verbal to learn.  He just needed a teacher that was willing to try different teaching methods and break things down into smaller steps.  He didn't need to have a long attention span, he just needed someone that was patient and willing to go slow.  I realized that I should not try to limit him because of my preconceived notions and fear.   He was not only capable of learning but has learned within weeks!

He still has some stuff to work on before he is a fully independent swimmer, but I am so thankful to God for his tremendous progress. This is an enormous burden lifted.

Yesterday I read the news of another boy with autism that wandered off and died in a nearby pond.  I cannot imagine the suffering of this family and pray for peace for them.  Please pray.

If you are an autism parent, don't let your child's differences or struggles stop you from trying.  Be encouraged that swimming is a possibility.  It may take a while, but it's worth a shot.  Jacob is proving to me over and over that he is capable and that all he needs is for me to believe in him.




Thursday, June 22, 2017

Jacob's Gift To Us


Today is Jacob’s 7th birthday! I can’t believe how big he is and how far he has come.   Over the last year we have seen him learn piano, addition, engage with the boys his age and so much more.  It has truly been a blessing.

The last two weeks, however, have been pretty difficult for him.  Jacob has selective mutism, an anxiety disorder in which he goes completely mute when he’s nervous.  The clinic has begun a tolerance program to help with his mutism.  They are having Jacob speak in each room in the clinic because he only wants to talk in certain places.  It was going well in the beginning until they got to a room that was especially loud.  Jacob hasn’t spoken for days since they started in that room.  Meanwhile, other negative behaviors have increased.  When we show up to pick him up at the end of the day, they won’t allow him to leave until he simply utters a sound like “sh”.  He has been acting out at home and his verbal stemming is becoming extreme.

Many times, when kids with autism are trying to overcome a difficult task, it gets really bad before it gets better like a roller coaster.  Yesterday, he was having extremely bad tantrums and screaming and kicking me.  It’s been making me feel so sad for him and discouraged.  But God, in his awesomeness, provided another amazing opportunity for us to see how God is using this all for His glory.

When Jacob was first diagnosed with autism, he wouldn't talk, make eye contact, or play with Jordan.  It was hard for her.  She realized she would have to talk to Jacob differently than other kids. We hired therapists to come to our home and they worked for hours with Jacob in his room.  I remember day after day Jordan would sit at the door and listen to the therapists doing their work, so she could learn the ways she would need to talk to him to get his attention. When the therapists would leave our house, she would copy all the things they were doing and eventually got Jacob to talk to her.  Still to this day, she uses methods that the therapists use to engage him.  It’s truly a beautiful thing to watch.

Jacob has taught her that she must be smart, kind, and patient with kids with special needs.  She has to treat them with respect and be as silly as can be.

Yesterday she was volunteering with our church for Backyard Bible Clubs. They were playing games with the kids when I noticed a family swinging on the playground. I told her to go and invite them to the club.  When she did, the dad said, “I'm sorry, but my son has Autism, and he doesn't do too well in crowds”.  Of course, this was not a coincidence.  She said that she completely understood and that her brother had autism, too.

Later during music and dancing time, the dad and his son showed up, so she jumped right in to talk to him just as if she was talking to Jacob.  He was sitting in his father’s lap, repeating over and over “Excuse me! Excuse me! Excuse me!” so she said, “Hey buddy, what do you need?” The dad, with shock in his eyes, said to his son, “Look, you got her attention, talk to her” and she and the little boy started talking to each other like they were long lost friends.  They were dancing to the moves of the worship songs and the boy even added some crazy moves of his own, so she did that with him.

At craft time, he took her hand and walked over to that area leaving his dad behind.  While they worked on it, he sat in her lap and gave her a huge hug.  The boy’s dad was crying and said, “I think this is the first time he's ever talked to a stranger”.  After club was over and he took his son home, he even came back out, sobbing, shaking her hand saying thank you so much.

I am so proud of how she treated the little boy.  Isn’t that how we should treat everyone?  With respect, with dignity, with love, with compassion.  I love that they got to hear about the Gospel while feeling genuine kindness from a stranger.

Jacob has taught us all to be a little more patient and silly and kind. He has taught us not to judge those who are different but to treat them with respect.  Even my sister said that when Jordan came up to her quietly to let her know that the little boy had autism, instead of being fearful or uneasy she was ready.  She said, “Because Jacob is who he is, we aren’t scared when others are who they are. Being around Jacob a lot has made us all ready to accept people just as they are”.  Jacob may not realize this, but by just being himself, he is changing people.

I’m so thankful for all the silly moments and the difficult moments.  I’m thankful for the times we must totally learn new ways to do old things and the times when there’s nothing we can do but to pray.

Jacob, you are such a sweet blessing to so many.  You are very loved for just being you.  I pray one day all the stories of how you changed people’s lives will touch your heart.  I pray that you will have a deep and rich relationship with the Lord and use all your struggles and successes to bring Him glory.

Happy birthday Jacob! Thanks for being you!



Friday, June 16, 2017

My son jumped into a boat filled with water, you won't believe what happened next!



You’ve probably seen some of the viral posts about hairdressers going out of their way for children with autism and sensory difficulties.  They cut their hair on the floor or they go into their car to cut it.  Or how about the waiter that stood up to bullies being mean to an autism family because their child was a little loud?  Today, I read an article about an airline worker who helped an adult with autism who was having a meltdown.  These posts resonate so much with me and I know they do with others as well.

  As an autism mom, I see the unsympathetic or pitiful way people look at my son when he is wearing headphones or flapping and making strange noises in public.  Sometimes it can be hard and uncomfortable to be around a child that you may not understand. Working with them is no different.  Doing things outside of the “norm” isn’t how we are trained to behave, right?  In school and in work, we do as we’re told.  So, those few and far between people who go out of their way to do something “unique” for someone else are truly special. 

Our swim instructors are just that. Unique.  Coach Matt and Coach Kelley have shown compassion and patience with Jacob.  They are open-minded and willing to adapt to the needs of the kids they work with. Teaching Jakey to swim has been on the top of our priority list, but his resistance to learning, matched with the incredible dangers of a deep pool, have been huge setbacks for teaching him. 


Recently, we found a unique place called Captain Swim Navy in Humble that offers swim lessons in a boat shaped pool that adjusts to the child’s height.  It offers a safe and effective way to train all kids to swim.  But more than that, when I called, Coach Matt said that he WANTED to help kids with autism and asked me to bring Jacob in.  In fact, he was even open to being trained by Jacob’s ABA therapists to better understand how to work with kids with autism.  Although each child is different, he went out of his way and adjusted his teaching methods for Jacob.  Coach Matt and Coach Kelley even learned how to use a picture schedule and token system for him and other kids that need it.   

These are the kind of people that may not even realize what a difference they are making in the community and for autism families.  I want to challenge you to think outside of the box the next time you encounter a child with autism at your workplace or in the community.  Be the one who is causing a stir because of your compassion.  Be the one who refuses to conform to how everyone else is responding and instead stepping out to be a change-maker. 

I am so thankful that someone has done this for Jacob.  In just a few weeks, he has learned how to float and hold his breath under water for quite a while! Through some innovative and hilarious techniques, Jacob has come much further than we ever expected.  He wasn’t wanting to put his head in the water while doing the alligator crawl, but a mirror did the trick.  He just wanted to see his own beautiful face. What a stinker. I know he will be swimming soon. 

Many people may not know that drowning is the leading cause of death in children with autism.  If you haven’t started considering swim lessons for your child, I urge you to call around and find somewhere.  If you are a swim instructor and interested in working with kids with autism, but don’t know how, contact a local ABA Therapy company and ask for training.  Many companies want to reach out and help the community so they have a place to recommend for autism families.  Let’s join together to make this world a bit safer for our kids with autism!