How a Fear Helped Create a Law: The Passing of House Bill 2516

On this journey with apraxia, my husband and I have done our very best to make sure all of our son’s needs were met.  Speech therapy - check.  Occupational therapy - check.  Accommodations made at school - check.  As impossible as it is to do, we felt as though we had thought of everything and had made plans accordingly.  The one thing that never crossed our minds - even though my husband is a police officer - was the possibility of him being wrongfully arrested under suspicion of driving under the influence of an intoxicating substance.

While that didn’t happen with our son - he’s only 11 - it did happen to the son of a close friend of ours.  He has apraxia and because of it, has slow cadence of speech. He was stopped on a routine traffic stop on the way home from work. Because of his slow cadence, delayed/slow processing (also common with apraxia), and poor eye contact, he was suspected to be driving under the influence.  James’s apraxia is global meaning his fine and gross motor skills are affected similar to his speech.  Because of this, James was unable to complete standardized field sobriety tests. 

Even though he passed a preliminary breath test at the site of the stop, and a second test at the station, James was taken into custody for driving under the influence of an intoxicating substance.  Fortunately, James still lived at home with his mother.  After an ample amount of time had passed for him to be home from work, and not having heard from him, Beth began to worry.  It was only when she gained access to his computer to utilize his Find My Phone app that she discovered he was at the police department.  Upon arriving at the police department, Beth was mortified to learn James had been taken into custody under the suspicion of DUI and was awaiting arrival of a drug recognition expert to determine what substance he was on. Beth knew that was completely out of character for James and not possible since she had just visited with him on the phone.  Only after she explained James’s disorders to the arresting officer, and the officer conferred with fellow officers, was James released from custody - without charges.

What a traumatizing sequence of events for James and his mother.  Upon hearing of the incident, my husband and I were brought to a new reality.  In just a few short years, our son could very easily be in a similar situation.  Something HAD to be done, but what?   Let the trouble-shooting and brainstorming begin.

Several months - yet no solution - later, the following link was shared in my local Apraxia Kids Facebook group: https://www.newson6.com/story/39866276/caffey.  Natalie Mayberry, a graduate student at Tulsa University’s School of Communication Sciences and Disorders, had completed research on the level of awareness of communication disorders among law enforcement officers.  She also developed a training program and presented it to some of Tulsa’s officers.  This was the beginning of the solution to my calm my fears.

I immediately reached out to Natalie in effort to offer a parent’s perspective as well as support.  My husband, being a Council on Law Enforcement Education and Training (C.L.E.E.T.) Certified Instructor, was able to offer his help in expanding the training program statewide.  In this initial conversation, I also told Natalie James’s story - changing the names to respect his privacy.  Hearing of this incident only motivated her more.  The momentum increases.

Out of respect for James and his mother, I contacted them to get their permission to tell of James’s incident before using it in any further trainings or promotions.  It was during that conversation that I learned legislation had been passed in the State of Ohio.  This legislation required the State to develop a voluntary database.  The database is for those with communication disorders, and it attaches - electronically - to their driver’s license as well as vehicle license plate.  This database allows law enforcement to be provided with information on the person’s communication disorder upon initial contact.  The ball is rolling now.

After obtaining links to Ohio’s legislation, I reached out to one of my local state representatives.  I had impeccable timing.  Representative Chris Kannady immediately contacted me and explained that a similar bill - only pertaining to those who are deaf, hearing impaired or have autism - had just passed in the House of Representatives and was sent to the Senate for approval.  He suggested I contact my local senator to inquire about amending the bill.  Senator Larry Boggs was eager to help. 

To garner more support for the bill, I reached out to the senate Author, Senator Darrell Weaver, Senator Roger Thompson, and the original author, Representative Tammy West.  I was very open and heartfelt with the legislators explaining not only my concerns for my son from a mother’s perspective, but also for that of law enforcement officers who receive little to no education on communication disorders. 

I told them James’s story and explained how through being married to a law enforcement officer, as well as having a career in the legal field, I could understand how easily an incident similar to James’s could happen at no fault to either party.  House Bill 2516 was amended by Senators Thompson and Weaver to add the words “apraxia or other communication disorder”.  The bill passed as amended and was sent back to the House of Representatives for a vote on the amendments.  After little discussion on the House floor, the bill passed as amended.  Next stop was Governor Stitt’s desk. 

House Bill 2516 was signed into law by Governor Stitt on May 9, 2019.  The law goes went effect November 1, 2019.

Since the signing, Natalie has revised her training program and made improvements to training videos.  My husband has contacted CLEET in order to obtain certification for Natalie’s training program.  We are hoping to launch it soon.  I have been working with the legislative liaison for the Department of Public Safety on the development and implementation of the database.  Great things are soon to be happening in the State of Oklahoma.  AND THIS is how one mom’s fear helped to create a law.

Dear Martha

Dear Martha,
     It is 3:30 a.m. On Christmas morning, and I should be sleeping. Instead, I sit wide awake with the events if last night going through my mind. I am mad. I am embarrassed, but mostly I am hurt.
     I remember visiting your house 15 years ago when Danny and I had just began dating. I remember the laughter and good times, and I couldn't wait to be a part of the Kelley family. A few short years later, my dream came true. It didn't take long, though for me to figure out this "amazing" family had flaws. I sat and watched how some members of the family were golden... chosen, while others barely garnered a half hug from you. When I inquired of this, the response I always received was "that's how it's always been". I sat and watched as you coddled those that have stolen from you time and again. Meanwhile others, who are kind hearted, hard working, and honest sat waiting on one thing: your love and attention. They sat quietly and watched as you showered the chosen ones with expensive gifts, never saying anything because "that's how it's always been".
     Fast forward a few more years. My son is born. A fifth generation William. I was so excited at the fact that he would get to know and have a close relationship with his great-grandparents as they lived right across the driveway. Then the cycle begins all over again. I go to the family reunion and watch you parade the newest chosen one around all the while my baby is barely acknowledged. I watch month after month as you dote on the chosen one, even traveling to another state to visit meanwhile you can't come across the driveway to visit my child. I do everything I know to help foster the relationship I so wanted Grant to have with his great grands, only to leave your house broken hearted, never saying anything because "that's how it's always been".
     Last night, for the third year in a row I sat and watched as you passed out gifts to the chosen ones while skipping over my son and yet again ignoring his questions of "where's mine".  To say I am hurt is an understatement. My heart is shattered. I cry for this child who never asks for or expects anything but to be loved like the others. I cry at the realization that my dream of him having a close relationship with great grandparents is never going to happen. AND, I cry for you.
     I cry for you because you have no damned clue what you are missing out on. You have grandchildren who are teachers, police officers, own their own semi, are fantastic athletes, and so on. But you can't see them for the successful, talented individuals they are. You care not to look past the chosen ones long enough to realize what an amazing family you have. Then there's Grant. Yes, he is "different", but if you would take a fraction of the time you have spent doting on the chosen ones, you would realize how simply amazing he is. He is very well mannered. He is silly and loves to make you laugh. He is so smart, even though he has a hard time expressing it. The one expression he has mastered, though is love. That boy has taught me love like I never imagined. He loves with every ounce of his being and beyond. His love can bring a smile to most anyone's face, and you are missing it! From this point forward, my child will be surrounded only by people who are willing to love him like he deserves to be loved. It's your loss, Martha, because I will not tolerate "that's how it's always been" any longer. My child, my husband, and many others deserve so much more.

Late for Work

Wednesday mornings are crazy for us.  Grant has speech therapy at nine.  I have court at nine so Danny takes Grant to his appointment.  Danny also works the night before and after, so I usually let him attempt a quick nap before Grant's appointment. This results in me running out the door at the last minute like my hair is on fire.  This past Wednesday was no different.  I yell to the guys, "I am headed to work.  Bye! I love you!" and go out the door.  I am at the car when the front door flies open and Grant comes running out yelling, "Wait!!"  I am thinking, "Ugh! I don't have time for this.  I am going to be late."  I respond with "What, son?"  That's when he melted my heart. "I want to tiss you."  So I tell him, "well come here."  He runs out to me - in his stocking feet (one of my pet peeves but reference the melted heart...) - hugs me up tight and kisses me on the cheek.  He then gives his best attempt at "Have a good day at work, mom" and escorts me to my car.  "I det da door for you." He opens my door, waits for me to get in, and then closes it.  I have the window rolled up.  He taps on it.  So, I start the car and roll the window down.  He stands up on his tip toes so he can lean in to give me another kiss and then tells me, "det to work."  Suddenly being late wasn't such a bad thing after all.  Sometimes, we need to slow down and realize what is most important.  He needed a little extra attention that day, and what a blessing I received by just slowing down for a minute.  Oh, how I love that boy!

McAlester Scottish Rite Temple - Miracles Happen There

How many of you who have seen this building caught yourself asking, "What is that place and what do they do there?" It sits high upon a hill and can be seen miles from McAlester.   Some of you know that it is the McAlester Scottish Rite Temple, but do you know what they do there?  No, it is not home to one of the oldest "He Man - Women Hater's Clubs".  Members of our community are part of the brotherhood that is housed in this building.  They are people from every aspect of our community - from executives to tradesmen.  But, do you know what happens there?  I am not going to claim to know everything or even half.  I only know a small part of what happens there, but oh, that small part... What I can tell you is MIRACLES HAPPEN THERE!

When I toured the temple some 12 years ago, I had no idea how much of an impact it would have on my life.  I remember seeing the banquet room, the theater and the huge stage with all of the elaborate back drops.  I remember passing by a clinic, called the Rite Care Clinic, tucked away in a corner.  I remember them mentioning they helped children with speech and literacy issues there.  Outside of that, I didn't remember much more about that clinic.

Fast forward 9 years.  Danny and I have an adorable 3 year old little boy.  He is the answer to our prayers and the light of our lives.  Everything about him is perfect - or so it seems - except for his speech.  I think it is him being stubborn like his dad and am positive that he will talk when he is ready to talk.  His pediatrician, however disagreed.  We were referred to the speech language pathologist for a speech evaluation.  The SLP agreed with the pediatrician and determined that speech services were definitely needed.  Because the Choctaw Nation does not offer speech services in McAlester we were referred to the Rite Care Clinic at the Masonic Temple. 

So here I am again, at that little clinic tucked in the corner of that huge building.  This time I am approaching it as a mom, a mom scared of what the future holds for her son, a mom who is scared of the unknown, a mom who longs to hear the voice of her precious son.  I was met a that office with kindness, understanding  and reassurance.  Rite Care performed an evaluation of their own and concurred with the Choctaw Nation.  Grant began speech services shortly thereafter.  He began meeting with his therapist, Ashley, once per week.  Around a year after beginning services, Grant was diagnosed with Childhood Apraxia of Speech (CAS).  Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. CAS is a complicated disorder that is not well known nor, until recently, well publicized.   I had never heard of it myself and therefore began researching.  As one can do, when seeking out Dr. Google, I really became scared and overwhelmed.  I barraged Ashley with questions and concerns at our next appointment, but was met with the calm voice of reason (and expertise in her field), "Just trust me.  He is going to be okay."

So, I did.  I trusted her and the members of that clinic.  Danny and I have taken our son to that little clinic in the corner of the Masonic Temple once (now twice) a week for over 4 years.  They have gotten to know Grant, learned his likes and dislikes, and even got down in the floor and played with him in order to help him.  They taught him how to move his mouth to make sounds and how to use those sounds to make words.  Now they are working on putting those words together to build sentences.  They gave our baby boy a voice!  To this mother who wondered if she would ever hear her son utter the words, "I love you, mom," they performed a miracle.

I find it safe to say millions of miracles have been performed in that little clinic in the corner of the Masonic Temple.  Numerous families (several I know personally) have received treatment there.  Many scared mothers have been met there with that calm voice of reason, only to later to witness their own miracles.  The other part of the miracles that happen in that clinic is that these services are provided free of charge (outside of a small initial fee).  Services are provided by top notch therapists at no cost to the families of these children!  Since Grant's diagnosis, Ashley has completed an intensive apraxia training workshop (aka apraxia boot camp) and is now considered an expert in Childhood Apraxia of Speech.  The fact that my child is able to receive speech therapy, by an expert in his diagnosis at no cost to us is a miracle in an of itself.  Unlike many other parents of children with CAS, I have never had the stress of fighting with insurance companies to obtain coverage for therapy nor have I had to worry about how I was going to cover the out of pocket expenses for therapy.  I told you - miracles happen there!

To say I am thankful to the members of the lodge for supporting the Rite Care Clinic would be the understatement of the century!  To express my gratitude to the Scottish Rite for making speech and literacy services one of the main focuses of their Charitable and Educational Foundation is virtually impossible.  Our lives and our son's life have been forever been changed by their generosity.

So... the next time you are driving into McAlester and see the Masonic Temple sitting high upon a hill, just remember... MIRACLES HAPPEN THERE!

**UPDATE**

Since first sharing this post, I have seen Facebook posts from other parents who share the same sentiments as I.  They are listed below:

Elizabeth Patterson Bays Miracles DO happen there. My son is one. And we are FOREVER grateful for Ashley. So wish we were still in McA seeing y'all. McA kids are so blessed to have Rite Care. Continued blessings for the fabulous work that y'all do ToddandAshley Monks

Sandra Gilliam-Streeter Great place!!!!

Jessica Gilliam Yes it was told to us that my son may never communicate intelligibly. Well, Kristin (Ashley's coworker) worked with Seth for years. He now volunteers to help others read and he is 9 yrs old. We are still working on sentence structure. They are miracle workers in my book. We are blessed! Oh, and Ashley worked with Seth as well. Thank you !

Alyson Curran I completely agree! We experienced our own big miracle there with lily!!

Jeff Stevens Love this place. I received my 32nd degree there. Could have done it in Guthrie but I loved the history of this building. Rite Care is a wonderful thing.

Cerita Morley

Shelly they have been doing things for s long time, when Samantha Morley Parker was 3 they worked with her on her speech and hearing issues! They did amazing work with her!

Kim Aldridge Suttles Shelley Kelley you have me crying like a baby! I don't believe I could have said this better myself. I have a long family history of Masonic members, and to think they would be able to help my child (now children) in such a phenominal way is beyond a blessing. You are absolutely correct - MIRACLES DO HAPPEN THERE!

Amy Jones Lee My daughter is learning how to read and everytime she says her th's perfect it makes me proud. I'm so thankful.

Ashley Page Pebley They helped me over come my dyslexia at a young age it wasnt that I was stupid it was the fact I needed a more hands on approach with my education and they provided it for me. Definitely a place full of miracles

3 Little Words

There are 3 little words every girl longs to hear from that special boy.  We dream about when, where, how soft or loud, in a crowd or alone.  Is he saying it because I said it first?  Is he saying it because he means it or just because he thinks it's what I want to hear? 

My wait is over.  For 7 years, 11 months and 12 days I have waited, and tonight it finally happened!  Every mother can't wait to hear their child say "I love you."  For most children, those 3 little words happened at around age 3 or 4, but unfortunately, that is not the case with children who are battling childhood apraxia of speech.  There is no "set" timeline.  It will happen when it happens.  BUT, oh how sweet when it does!  This night is one that I will never forget!

Now don't get me wrong.  For years, Grant has been able to tell me he loves me in his own special way/language.  For him, it has evolved from "muff me" to "I miss you" to "I midge you" to "I mudge you" to "I wuv you."  But tonight... Oh, tonight was impeccable!  It was bed time.  Grant was in bed with me because he wanted to "snuddle".  I held his sweet little body next to me and kissed him on the forehead. That is when he looked up at me and said, "I love you."  My reply was that of a typical apraxia mom, "Wait.  What?  Say it again." and he did. "I love you." It was perfect!  The /l/ sound was at the beginning of the word "love" and he said it spontaneously, totally unprompted and completely sincere.  He meant it!  Tears began to well up in my eyes as I hugged him tighter, kissed his sweet little head again and said, " I love YOU!"  He said it again, perfectly.  I kept repeating "I love you" to him over and again just so I could hear him say it back to me again and again.  He soon drifted off into sweet slumber.  Me... well... the tears have yet to stop flowing.  Happy tears that is.  Oh that boy... He melts my heart!

Police Wife Life

Outside of college, have you ever made a beer run at 8:30 a.m.  I just did.  Danny and I are not big drinkers.  We rarely drink at all, but every now and again an occasion rises.  This past Sunday brought about one such occasion, but not like you are thinking...


Sunday morning, 25 minutes after Danny's shift was supposed to end, I get a text "going to be late this morning".  To which I replied with as much sarcasm as possible in a text message "realllly?"  No response.  The lack of response was a sign.  At around 8:00 a.m. my knight in shining Kevlar finally made it home.  I asked him the usual "how was your night?" He looked at me with pain in his eyes and said "Not good.  Not good at all."  He went on to say he didn't want to talk about it, and I knew better than to ask him to do so. 


Danny had made mention that he wished we had some beer.  I volunteered to go buy some, but he told me I didn't need to.  That he would be fine.  I watched him, sitting there looking so defeated and worn, all the while wondering what it was he had experienced that had him so down trodden.  To see this hero of mine this way broke my heart, but I wasn't about to let him know that.  I got up, got dressed and went to the store.  I was willing to do just about anything to help alleviate his pain, and the drive gave me opportunity to cry for him without him seeing me.  My heart was aching for this brave man who chooses every day of his career to go out and combat the evil of this world, who that day came home defeated. 


The only mention he made the rest of the day about the call was that in his 17 years in law enforcement he had never experienced anything like that and he hoped to never again.  I didn't ask questions.  I knew if and when he was ready to talk about it, he would. 


Thursday night, Danny was ready.  He looked at the obituaries in the newspaper.  He paused, looked at me and said, "do you want to know why my night was so bad the other night?"  The call he responded to was an infant in distress.  He was met at the front door by an elderly gentleman saying, "Danny, save my grandson."  He led Danny to the bedroom where there was a 3 month old baby boy laying unresponsive.  Danny started CPR and continued until he heard the ambulance pull up out front.  He then scooped that baby boy up in his arms and ran out the front door with him, jumped over a brick retaining wall and yelled at the ambulance drivers to open the back doors because he was bringing the baby to them.  The medics went to work on the baby in the back and Danny jumped into the driver's seat of the ambulance and took off. 


My hero did everything in his power to save that precious baby. God love him!  When members of the public see an officer in uniform, they see a power hungry, ego ridden, bully with a badge and a gun.  For the greater majority of officers, that couldn't be the farthest thing from the truth.  Behind that badge and the gun is a human, with a heart and emotions, who chose a career where they spend every day seeing the ugliest of the ugly of this world.  God Bless Them!  The next time you cross paths with an officer, at the very least smile at them.  Say hello.  Shake their hand.  Tell them thank you.  You never know what kind of call they just came off of.  Your simple act of kindness may help make a miserable shift a little more bearable. 

Ugh Disdusting!

The more Grant's speech develops, the more his personality and opinions shine through. The other morning we were headed out to the car when he stopped in the driveway and said "UGH! WHAT IS DIS? DISDUSTING!" I figured he had discovered a dead animal or some dog feces or something of that nature. As I approached where he was standing he pointed to a cigarette butt laying on the ground and said, "A SMOTE. DROSS." I do think smoking is a nasty habit, but don't ever remember expressing that in front of Grant. It is HIS opinion of the habit, and I am proud he is able to express it.