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.