Jake's Journey with Apraxia

 

by Amber, Contributing Writer

Amber has two children diagnosed with apraxia. Here’s what life looks like for her:

1.) How and when did your first child get diagnosed with apraxia?

Our first son, Cason, was diagnosed with oral apraxia and suspected speech apraxia at 17 months old by an experienced developmental pediatrician. At this time, he began private speech therapy, early intervention speech therapy through the state program, and private occupational therapy.

He also received a diagnosis of sensory processing disorder and hypotonia. His SLP focused on the oral and speech apraxia. The OT focused on the oral apraxia (feeding therapy), SPD, and hypotonia.

At 23 months, the developmental pediatrician and private SLP gave a firm diagnosis of speech apraxia. The diagnosis was also confirmed by Nancy Kaufman when we took Cason to Michigan for a four-day intensive when he was 26 months old.

2.) How about your second child?

Our second son, Callen, was given the diagnosis of severe expressive language delay at 16 months by the same developmental pediatrician that diagnosed Cason. At this time, he began private speech therapy and early intervention speech therapy through the state program. He was given an official diagnosis of speech apraxia at 23 months by the developmental pediatrician and this was confirmed by his speech therapists.

3.) In what ways were your two children similar/different as babies and young toddlers? Did you recognize the signs of apraxia with your second son earlier than with your first?

Looking back, Cason’s oral apraxia was a problem for him from the very beginning. He had a very difficult time learning to latch during nursing, learning to take a bottle, transitioning to a sippy cup, and still can’t drink from an open cup. Each time we transitioned him to something new, I told the pediatrician that it was like his tongue had to relearn what to do each time. He also couldn’t figure out how to eat food because of the oral apraxia. He did not know how to move food around with his tongue and didn’t have a munching pattern.

As for speech, he didn’t babble as an infant. He had no words until his first word at 21 months old. He also wasn’t able to imitate other motor skills such as waving hi/bye, playing hands games, pointing, and learning sign language.

Callen didn’t have any of the eating issues that Cason had as an infant/toddler. Of course, I was constantly comparing his developmental skills to Cason’s. I tried very hard not to, but it’s easier said than done. I began getting worried when I noticed Callen wasn’t waving hi/bye, couldn’t imitate simple sign language, wasn’t clapping, etc. And he had no words or babbling. Cason never groped for words but Callen does grope when trying to say/imitate a word.

4.) I know hearing that your child has apraxia is a very overwhelming and scary time. How was hearing your first diagnosis different from the second?

When I first heard about apraxia with Cason, I had never heard the term and spent hours reading, researching, and learning as much as I could. I went through many stages: fear, anger, guilt, hope, and determination. I settled on determination. I was determined to do whatever it took to give Cason a voice.

And then came Callen. When he was six months old, we asked the developmental pediatrician what our chances were of having another child with apraxia. He told us there was a 20 percent chance that another child would have some type of speech disorder, but not necessarily apraxia. I think I took that last phrase and held on tight. So tight that it put me in denial.

I mentioned to Cason’s early intervention teacher that I was worried about Callen when he was about nine months old because he wasn’t waving, clapping, pointing, babbling, etc. I decided to wait on an evaluation because I just didn’t think we were dealing with apraxia again and that he had a typical “speech delay.” He didn’t seem the same as Cason. Even after he started private and early intervention speech and wasn’t making progress, I kept telling myself it was just a speech delay.

So the day we went back to the developmental pediatrician when Callen was two weeks shy of turning two years old, I was completely shocked when he mentioned apraxia. At first, I thought “Okay, we’ve been here before. We know exactly what to do. No problem.” But then it started to hit me that he wasn’t making progress like Cason had and he was having a harder time. He is still very far behind where Cason was at this age, but we have seen some progress recently. We celebrate the small steps, just like we did with Cason.

5.) What’s an average week like in your world? Do your boys see the same speech therapist?

Cason, who is now 3.9 years old, has three – 30 minute private speech sessions a week. Callen, who is now 2.4 years old, has early intervention preschool with group speech two times a week and also two – 30 minute private speech sessions.

I also take our four-month-old and home-schooled nine-year-old to the appointments. The boys take turns seeing the same therapists during the week. We have found this works for us. The boys each respond well with the different therapists. We actually went through several therapists with Cason until I found ones that were knowledgable about apraxia.

6.) How are your boys doing now? Any therapy techniques that are working well?

Cason is doing awesome! Just the other day we were bragging about his 8 word spontaneous sentence. He still has trouble imitating and articulating longer phrases and he tends to leave out words like ‘is, has, are,’ etc. Also, sometimes he drops the ending sound of words.  But when I think back to where we were a year ago, his progress just blows me away.

Callen is also making progress. He has recently started calling me ‘Mama’ and my husband ‘Dada’ and has several other approximations.

Cason has done very well with his SLPs using the Kaufman Speech to Language protocol, but Callen responded better to the PROMPT method. Cason works mostly out of the Kaufman workbook now (rather than the Kaufman cards).

7.) Is there any advice or thoughts you’d like to share with other moms who are going through either single or multiple apraxia diagnoses?

I would say find a support system of other parents that are going through the same thing. I found that people are very well-meaning, but they just don’t always “get” apraxia. It helps to talk with parents that are actually going through it or have been through it. Also, remember that YOU are your child’s best advocate.

And for me, it was, and is, important to have faith in God’s plan. There have been so many positives that have come from this journey, and I have met many amazing parents along the way. While I wish my children didn’t have these struggles, I can also appreciate the blessings that have come from this journey called Apraxia. 

Bio: Amber lives in South Carolina with her husband and four children. She has two sons diagnosed with apraxia of speech and sensory processing disorder. Her older son also has hypotonia. She is a stay at home, homeschooling mom who taught public school for eight years. In her free time, she likes to read and sew.