Diagnosis Road: Corban's Story (apraxia of speech, phonological disorder, spd)

The diagnosed: Corban, 7

Those who love and care for him: Megan (mom), Dallas (dad) and siblings Ellora, Abigail and Henry. 

What is the name of diagnosis?

Childhood apraxia of speech: 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.

Phonological disorder: a type of speech disorder known as an articulation disorder. Children with phonological disorder do not use some or all of the speech sounds expected for their age group.

Sensory Processing Disorder: an over or under sensitivity to sensory input such as sights, sounds, favors, smells and textures. 

Please tell us as much of the diagnosis story as you wish.

Corban was a pretty typical baby 

ironically way more vocal than his older sister Ellora. Because she was a late talker and received a small amount of intervention, I thought that it was a really great sign. He was going to be an early talker!! 

Corban's speech issues didn't really affect us as a family until we all noticed that nothing was happening developmentally. There was just crying and screaming and frustration. From everyone. This kid was so smart, you could see it in his eyes, but he knew we weren't connecting and it was horrible.

Look at those eyes!

One day a friend who is a speech language pathologist (SLP) mentioned the word apraxia. I looked it up and I just felt scared. Knowing that there was a name to what was happening with Corban and the reality that this wasn't something he would “grow out of” made it really scary and real.  It would follow and hinder him if we didn't get him the help he needed. I still dragged my feet about getting him evaluated but I forged ahead and got the boat load of paper work filled out and sent in. We got in at Marshall University Speech and Hearing Center.

The assessment came back as moderate to severe childhood apraxia of speech. They also noticed some sensory processing disorder (SPD) issues and recommended getting him evaluated for that as well. Sitting there with that paper in my hand...that was really hard. I can remember feeling so relieved to have an answer, yet so crushed that it was real. It was like holding a disease and a cure at the same time and trying to process grief and relief all in an instant.

To back up a little bit again, the first year of life was great with Corban. He was chatting, he was sweet, he did everything he was supposed to do; he was a doll baby. I mean, so so so sweet. His second year was rough. Really rough. I look back at videos of him and he was always crying, screaming or whining; there are very few of him happy. It hurts really bad to watch those. Now I know why he felt and acted that way. I remember my extreme frustration, depression, and anxiety. It was bad and made worse by my lack of understanding. I just didn't know. I have a lot of guilt. Dallas was in denial for a long time about all of it.

It's common for one parent/caretaker to deny that the issues are there. He didn’t see the ALL DAY things that I saw, so it was easy for him to overlook or not see the individual issues as a whole. Once we got Corban into therapy, Dallas saw the changes in him and said that he wished we had gotten him in sooner. The relationship that the two of them have is unbelievable and it has been so awesome to watch it grow as Corban's speech has become more and more clear. 

Corban’s third year was also rough, but better than the year before. He began therapy and has been in it ever since. 

The phonological disorder diagnosis came through about a year and a half ago as his speech cleared up. So that has been addressed in his sessions as well.

Sensory processing disorder was treated with occupational therapy within 9 months. It was really slight and I think just a little something added to make me worry. Lol.

How does it affect your relationships?

Oh Lord, it affects everything! Your relationships change in major ways because suddenly you have this “thing” that needs lots of time and hard work to treat. It's hard to be happy when your child is constantly frustrated and can't communicate. It was impossible to take him to church nurseries because he would cry in frustration when he would say, “Hey! Stop that!” and the other kids wouldn't understand. This resulted in him pushing kids and acting out.  That's just one example because it literally affects everything.

What is one of the hardest parts of living with this diagnosis that people may not expect?

Guilt. I have an insane amount of guilt over not getting him in treatment sooner, even though we started at an “appropriate age.” I even have guilt about him having apraxia at all.

What is an unexpectedly glorious part?

Watching him “get it!” Or hearing him say, “I love you mom” in those exact words. It used to be, “I uh ooo mmm” (which obviously, I loved too). 

Looking at him in the rearview mirror singing his heart out. Watching him pray and thank God for his life. Glorious doesn't even touch it.

Are there certain places you just can’t go?

Not really. 

But when we are out and I see a kid totally losing it, I try to say something encouraging to the parent or even give the Mocking Jay salute. A fist in the air. Anything that transfers to, hey, I see you. I'm with you, I'm not judging you, I understand. It will be okay!”

When people try to comfort you, what is the least comforting thing they say (even though it may come from a good, kind place?)

“It could be worse.” I HATE that.  I know that it could be worse. I feel like it completely undermines the struggles that he has overcome. I think ultimately we all know it could be worse than what it is, but that doesn't mean that it isn't bad right here, right now, to him/me/us.

What do you want others to know about parenting/living with this diagnosis?

*It will be okay. You will see your kids struggle and you will see that they can overcome. You will get to this “thing” that you thought was so big and bad and hard and your kid will shatter it like it was nothing at all. You will learn more about yourself on this journey with your child than you ever thought you would. The joys are sweeter for the sorrows you have suffered.

*Cry. Cry when you want to and when you feel like it because it's hard. Parenting is hard. Parenting special or medically complex kids is harder.

*It's okay to feel your emotions. You have them for a reason. Feel the anger, sadness, frustration, sorrow, but don't hold onto them. Feel them and let them go.

*Find your tribe! Go to them for advice. Lean on them for support. Let them lean on you. And find them anywhere you can! Online, in person, wherever!

*This is for everyone reading this. Don't judge. Just don't. You have no idea what that mom that lost her mind on her kids in the store is going through or the reason that child is losing their mind in the bread aisle at Kroger. Maybe it's because they wanted to pick the bread out but Momma couldn't understand what they meant or what they wanted to do. There are so many maybes.

Do you have any resources you’d like to share in order to spread awareness of/support for your diagnosis or condition?

CASANA is an amazing group for Apraxia awareness and research that you can access here. 

I think my favorite resource for talking to Corban about apraxia is a book by a local SLP named Julie Bowen. It's called, “Sometimes I Can't Talk Well.” You can find it here on Amazon. It is an amazing tool that helped me talk to Corban about Apraxia and how God knit him together for a purpose. Part of that purpose (and mine) is his journey to fight apraxia.

Asher's 7th Anaphylaxis: Lessons

What I am about to say is just my own experience. Always consult your medical team and do your own research. My story should give you ideas on what to discuss with your team and research, it shouldn't be your own plan. 

***

Asher: My throat hurts, I think it's the sprinkles. I think I ate too many and it's making my throat itch and feel funny. 
Me: What sprinkles? 
Asher: We're eating ice cream. 
Me: Ice cream? We don't have ice cream.  Plus, we didn't read the label together first.

I walked into the kitchen, got vanilla ice cream out of the freezer and one of the first ingredients was egg yolk.  My heart sinks. I feel almost like I'm going to black out.  How did this get here?  I numb up as best as I can and I tell Asher the hardest thing.

Me: Buddy, that ice cream had eggs.  How much did you eat? 
Asher: Just one bite and as soon as it went down, it hurt my throat. 

He runs to me and cries and says he's scared.  I tell him that's ok because sometimes fear keeps us safe and fear tells us to act and not be passive about something dangerous.

Me: Go lie down, watch some YouTube and I'm going to get you ready for the day because you have on a summer outfit and it's cold outside.  

Really, I was preparing us for a possible ambulance ride. I put on a bra, put on a hat, grabbed my phone charger, made sure we had everything that the ER would need and sat the epi-pens nearby where Asher couldn't see them.  20 minutes passed and I thought oh my gosh, this isn't going to progress.  He's even reacted to eggs baked IN things and this was pure egg yolk not heated up, could he eventually outgrow this one? 

Asher: My belly hurts, I think I'm just nervous and need to go to the bathroom. 
Me: Ok buddy, I won't listen, but I'll be right outside the door.  Does your throat still feel funny? 
Asher: No, it doesn't feel funny. 

Ok, maybe it's just nerves. As I stood outside of the open bathroom door, I messaged a fellow food allergy mom about what was going on and when I hit send, I heard him clear his throat.

You see, anaphylaxis isn't always you eat something and stop breathing. It isn't you eat something and immediately pass out.  You want to stop it BEFORE it gets to that, but you're also prepared for the times that it begins with the worst. Anaphylaxis is any two body systems affected. For example...
Hives AND stomach issues.
Throwing up AND a runny nose.
Sudden lethargy AND hives.
Throat issues AND stomach issues. 

I was thrown off because they didn't happen at the same time.  But when I heard him clear his throat and looked at his face (he looked pale and scared and in pain) I knew.  I should have known without having to hear that throat being cleared or looking at his pale face or seeing my own words typed out to a friend, but I didn't.  THE 7TH TIME HE'S HAD ANAPHYLAXIS, this time with a KNOWN ingestions of a food he's allergic to, and I didn't act as fast as I should have.

I grabbed his epi-pens. As I rushed him off of the toilet, we had this quick conversation:

Me: Ash, what are your symptoms? 
Asher: Stomach pain and funny throat. 
Me: How many is that? 
Asher: <starts crying> I don't want to. 
Me: I know buddy, but your breathing is the most important thing and you've been here before.  Lie down flat on your back and watch me do it. Ok, we take the blue part off and grab it in our fist with our thumb wrapped around too and not on the top.  Then I hold it on your thigh and I push really hard. <pushed the needle in his thigh>  

We lock eyes and count 
1, 2, 3, 4, 5, 6, 7, 8, 9, 10
(you only have to count to 3 now, but he kept counting so I held it on his thigh)

Me: Did that hurt? 
Asher: Not that bad.  
Me: How do you feel? 
Asher: I already feel better. 

His face immediately gained some color and while his voice was shaky and he felt wild inside, he was laughing and he was relieved it was over. I had big sister Zoe hold his feet in the air and I called 911. When I hung up with them, I called my mom.  As always she made it to my home before the ambulance. No matter where she is, somehow Bibi always gets there first.  Then, a friend who knew what was happening showed up and followed us to the ER.

The ER was so packed that we had to wait it out in the hallway, which was fine.  Asher was happy and completely winning over every person in the ER. We had the most amazing nurse who knew all of the YouTube shows Asher likes to watch. Only one person was allowed with him because of the hallway situation so my dad came back with him for about 10 minutes while I went to the waiting room.  When I got back to him, he looked suddenly terrible and wanted to hug me. He whispered, "my belly hurts."

It was kind of shocking because he had been acting so happy. I had even thought well, we made the right decision, but maybe it was never going to get that bad anyway and that's good.  I told the nurse and took him to the bathroom and stayed in there with him.  He said he was going to throw up.  I got a bucket and the nurse came to the door. She said they needed to start an IV to give him Benadryl and steroids and epinephrine.

This is why for Asher we don't use antihistamines first or alone. In fact, they aren't even in our action plan. He only gets them at the hospital and only WITH epinephrine.

Me: But Benadryl lowers the seizure threshold and his epilepsy is uncontrolled as it is, can you give him Zyrtec? 
Awesome nurse: Benadryl is the best medicine for him to help the epinephrine fight this.  Better a seizure than not breathing.  
Me: Start the IV. 

She said they couldn't wait and if he needed more time in the bathroom she would do it in there.  He didn't and we went back to the bed.  Asher is a kid that PROUDLY isn't scared of needles. But he was so scared and she was so amazing with him, talking about YouTube and letting him feel a little in control of the situation by letting him help her.

Asher: <clears his throat and goes pale>
Me: Just do it fast, I'll hold his arm. 
Asher: <cries out>
Me: It'll be ok buddy, hold still. 
Asher: <with tears streaming down his face>My iPad is only at 5 percent <whimpers more>

We all got a good laugh out of that.  He was crying because of his iPad not the needle haha. They pumped him so full of medicines that all counteracted one another in regards to amping him up and slowing him down plus the anaphylaxis and prior epinephrine...he immediately went to sleep.

I began my watch.  Alone. I watched his arms and toes and feet and eyebrows and lips and shoulders twitch over and over and over in his sleep. I waited for a seizure.  My head was pounding from the stress on my body and there was action all around me.  But it was as if it was all blurry while my eyes focused on my little boy. No seizures happened in the 5 hours that we were there and he slept the entire time.  I was glad for that, so he didn't have to feel the wildness within his body. The wildness that was saving his life. It also made me scared that we wouldn't be able to wake him up.

When they released us, the doctor said his name and he woke right up. I called Isaac to come and get us and Asher and I finally ate after not eating since 8:00 that morning. I took a shower and got on the couch.  I slept on and off from about 9pm to 11pm while Isaac stayed with Asher.

At 11, Asher came downstairs (Isaac had been with him in the bed upstairs) and said he had a "migwaine." He crawled on top of me and snuggled in.  All 71 pounds of him. I snuggled right back and we fell asleep until 5am when I woke up with my whole body in a panic.  Which I expected.

Anytime anything like this happens with Ash, I'm always completely together when it happens and the rest of the day.  Numb, even.  Day 2 dawns and my body feels such intense panic but my mind is numb.  At some point, my mind catches up with my body and I finally cry and lose it. I'm writing this out in between the body/mind connection.  I'm still numb and waiting for release.

Last night before I fell asleep, Isaac and I talked about how we can do better and what we learned. We still don't know which one of us bought that stupid ice cream and I'm kinda glad about that.  When something like this happens, it's hard not to heap guilt upon yourself.  Instead, we're focusing on the lessons we learned and we hope to help others with those lessons. Here are a few notes, not a comprehensive list:

* As a family, we will review the not eating unless you read the ingredients every time rule.  Isaac and I always read the ingredients before we cook or serve a thing, but we need to remind the kids. We also read the ingredients as we buy groceries, but because sometimes we can fail at this, we also re-read them every time we serve them.

*We are reinforcing the do not eat unless you tell an adult rule.

* Especially after seeing that the reaction came back even worse once we were in the hospital, we reminded one another to use  epinephrine with two body systems. Period. Every time. If we're thinking of using it, we just do. This has always been the rule by the way, it's just wild how much you can over think things in the moment.  We did ok, but next time we can do better.

* This is the first time we've use an actual epi-pen in a lot of years because with the last two episodes of anaphylaxis we used the Auvi-Q device (an epinephrine auto injector that has since been recalled).  Sometime within the past year, I read about instead of swinging the epi-pen into the leg, you can place the tip on the thigh and push really hard.  I did it that way this time and it was amazing. It seems like there is less risk of gashing the skin open or missing the thigh or sliding off of the thigh. Those were always my fears.   (*this is just what I decided to do, I'm not saying it's the right thing for you. Consult your doctor and do some research on it if you're interested in learning).

* Secondary reactions are REAL and people need to be made more aware of them. While we always watch closely, I was shocked that it came back worse after we used an adult sized epi-pen and he recovered so quickly at home.  ALWAYS ALWAYS ALWAYS go to the ER after using epinephrine.

*We always do, but it's worth saying: ALWAYS carry two epinephrine auto injectors with you AT ALL TIMES. One time we had to use the second one in the ambulance. You may need the second one.  Also, the first one may not work.  YOU NEED TWO, please remember this.

* What if we would have ignored the seemingly minor body system reactions the first time around because alone they didn't look life threatening?  I don't even know, but if you question whether you should use epinephrine, JUST DO IT. Just do it. The point of using epinephrine is to use it as quickly as possible BEFORE your body progresses to severe breathing problems or cardiac problems.  Do. Not. Question it. If breathing is affected and it's the only symptom, epi right away.  If any one symptoms is severe and you're worried, use epinephrine. If you feel funny about it and in your gut think something is not right, use epinephrine.

IT DOES NOT HURT TO USE EPINEPHRINE NEEDLESSLY, but it can cost a life if you need it and don't use it, or even don't use it fast enough.

Today, Asher is wild as a buck and his body can't stop moving.  But he's alive. Again.

Adderall and Jesus

The greatest tragedy in humanity is when we do not wrestle with God, when we become so apathetic that we are but a limp rag doll in the hands of a mighty lover who wishes that we fight back; that we embrace Him and choose to find truth. Christ will seek the ends of the earth for the one sheep that has gone astray. He will fight the darkness to find His beloved, but when He holds us in His arms and we do not show any sign of life, then it is the heart of a King that is broken and all of creation will moan in the loss of another soul that was meant to dance in the courts of Heaven.

Take your doubts to Christ, let this fire grow inside you and become aware that He is wanting a heart that beats and seeks knowledge, He wants a mind that thinks and learns wisdom, and He wants a soul that cries out for help when it seems impossible to find. Because He broke down the gates of hell to rescue His bride, He is coming with a righteous fire in His soul and a joy that will wipe away every tear from your eyes; You just have to be willing and ready. -T.B. LaBerge

I write this blog as a former rag doll, pretending to be a real human, holding her own. 

I'm coming off of day two of being on Adderall and Zoloft together. What a trip! Day 1 was spent wondering, "is this how normal people feel?" Everything has felt so good! Suddenly, I'm aware of everything. Smells, sights, sounds. My own heart beating. Coffee doesn't have the hold on me that it did before, even though I still really enjoy it because IT'S COFFEE. I think I was trying really hard to self medicate with it, as crazy as that sounds. Wake up, get excited for coffee (which is what got me out of bed), drink coffee, get a little high, it lasts for an hour or two and that's it. Coffee got me through until about noon, while Adderall is a hug that lasts all day, ha! 

I have organized and gotten more accomplished in 2 days than I have in 2 whole years. I am unrecognizable. I'm also learning that maybe 2 Adderall pills a day is a bit much for me.  The first night, I went to bed at 4am and woke up ready to go at 6am. Night 2, I fell asleep at 10pm and woke up at 1am...you guessed it...ready to go (which is when I'm writing this). I know that this is the high of beginnings and the high of this new medicine in my body.  I know it will eventually even out and that both comforts me and terrifies me.  

Underneath all of this, I have some quiet fears. 
This feels good and I've come to question what feels good. I'm not used to it but I'm craving it.  
I fear that I'll begin to put all of my hope into these two little pills and I'll forget about Jesus. 
I'm afraid all of the angst I felt before was what made me a good writer and now my ink will dry right up. 
I'm scared I'll get addicted and keep needing to increase my dosage until I can't anymore and then what?  
I'm scared of this new feeling of good. 
I'm scared that I'm trying to sabotage the good of what it's doing for me with "what ifs." So much so that I'll quit. 
I'm scared that it'll affect my liver like Cymbalta did so many years ago and I'll have to quit taking it after getting a taste of what life can be like. I can't go back. 

I am really, really scared that it'll work. And I don't know why. 
Maybe it's because all of those years spent in darkness will suddenly feel so wasted.     
Maybe when the fog lifts, I'll be able to look back and see all that I could have given my kids in their early years, but didn't. 
At the same time, my mind is screaming, BUT THERE IS SO MUCH MORE TIME; better to start now than to live in hopelessness forever. There is always time, as long as you're breathing. My God is reminding me that He will restore the years that the locust have devoured. And not just for my kids and husband...I am as important as they are and He will restore to us all the years that mommy was in a haze. 

Oh but this fickle heart...my heart's quiet voice is low but insistent. It speaks from fear and self-preservation. 

Listen to me, Courtney's mind.  Guard me. I am so scared and I want an out in case this doesn't work. Guard me. Let's not get too excited. You're getting excited and we need to calm down! We need to go back to what we're used to and write out all of the ways that this could go wrong so that when it does, it won't be so foreign. You will have predicted it, therefore you won't be so disappointed, right? 

Meanwhile, the Word of God--which is written on the very tablet of my heart and dwells within me--is screaming out:

THE PEACE OF GOD, WHICH SURPASSES ALL UNDERSTANDING, WILL GUARD YOUR HEART AND YOUR MIND IN CHRIST JESUS, COURTNEY. YOU HAVE NO POWER TO GUARD YOUR OWN HEART, SO TELL IT THAT THE PEACE OF GOD WILL. 

NOT YOU. 

NOT ADDERALL. 

NOT ZOLOFT. 

NOT LISTS. 

NOT WELL LAID PLANS.

THE PEACE OF GOD, 

WHICH IS BIGGER AND MORE LAYERED AND SIMPLER THAN YOU COULD EVER UNDERSTAND WILL STAND GUARD OVER YOUR HEART AND YOUR MIND IN CHRIST JESUS. 

YOUR HEART AND YOUR MIND CAN'T TAKE TURNS TAKING CARE OF YOU ANYMORE. 

HIS PEACE WILL COVER YOU ALL. 

SO PUT ON HIS ARMOR AND LET'S GO.                       

Where Adderall can only take me so far, Jesus Christ has always and will always provide my every need, even when I don't know what that is.  There is no, "where Adderall ends, Jesus begins" crap. Jesus is all there is and I'm not adding medication to Him because He's lacking. He's GIVING me medication because I need it. 

Adderall has limitations, Jesus does not. 

I can have both Adderall and Jesus. I can have both medication and meditation. In fact, I need all of those things at once and that's ok. It's more than ok, it's the plan. 

So here I am at 3am writing, which is a new thing for me.  But right now, I can't NOT write. I'm going to have to ride this night out at the keyboard. 

I'm scared of getting better but I'm way more scared of staying the same. 

His Voice Shakes the Wilderness

It's where I want to go. Out into the wilderness and let God have His way...to shake it off of me...out of me. He may have to carry me out, but I'm comin' out. Come what may...

Isn't that what it feels like sometimes?  A wilderness in our souls. Let us remember as we travel, His joy in the wilderness is our strength. 

It reminds me of this beautiful part in Hosea 2, that is my absolute favorite.  For whatever reason, it's the easiest place for me to be intimate with God. 

Therefore, behold, I will allure her,

    and bring her into the wilderness,

    and speak tenderly to her.

And there I will give her her vineyards

    and make the 

Valley of Achor a door of hope.

And there she shall answer 

as in the days of her youth 

as at the time when she came out of the 

land of Egypt.

And in that day, declares the Lord, 

you will call me ‘My Husband,’ 

and no longer will you call me ‘My Baal.’ 

Hosea 2:14-15

God won't give up on us, friends.

The Valley Of Achor (trouble) will become the door of hope. It describes the redemption promised by God. For us!! Us!! We will walk out of the wilderness brides of hope! Brides of joy! No longer married to the world, no longer married to its security!

His very voice can shake the wilderness He uses to change us. 

So let's stop fighting it. Let's just let it come.  I'm weeping as I type this because I can feel us all withering away in different ways because life is crushing us. WE NEED TO FIGHT! We cannot go down!  I'm scared and I'm weary and I'm worn. I'm scared for you, I see your fear, I see how exhausted you are. How your soul melts away from sorrow. How your eye wastes away from grief.  

Those who have gone before us, who are in the very presence of Jesus, are screaming out to us KEEP GOING, YOU DON'T KNOW, YOU CAN'T IMAGINE WHAT'S ON THE OTHER SIDE WHEN YOU KEEP PRESSING ON AND DON'T STOP!  TRUST US!  

And I hear them. I hear them, don't you?  They know from first hand experience now. We may be throwing water on each other while we run this race but they're at the finish line with confetti and a whole ocean of water for us to jump into. A finish line where we'll never be tired or thirsty again. 

Invite God to shake your wilderness today.