Jake's Journey with Apraxia

Today marks the third Apraxia Awareness Day. What do you know about apraxia? Are you just starting out? Settled in with a therapy routine? Does your grandchild, niece, nephew, or friend’s child have this diagnosis?

The following are a few facts about childhood apraxia of speech (CAS):

• Apraxia is a neurological motor speech disorder where the child’s brain knows what to say, but the mouth, tongue, and jaw do not cooperate. Frequent, intense therapy is required in order to strengthen the brain pathways necessary for speech to occur.
• Apraxia comes in all shapes and sizes. Some kids have verbal apraxia, which only affects speech. Other children have global apraxia, which affects other motor skills such as catching a ball or running. In other words, the brain knows what to do, but is not able to communicate that message to the legs or arms.
• Sometimes apraxia is the only disorder a child has, but other times it presents itself with autism, downs syndrome, sensory processing disorder, and a host of others.
• Progress varies from child to child. I’ve heard of children getting a diagnosis at age 2.5 and speaking at an age appropriate level a year later. I’ve also heard of kids remaining in speech therapy through elementary/middle school.
• The current apraxia of speech rates are sketchy – 1 or 2 children per 1,000 – but nothing definitive. The CDC has not released any official stats specifically on apraxia.
• Symptoms include: Quiet baby who does not babble, first words are late and limited, can understand what is being said much better than he/she can talk, and inconsistent speech errors.

My journey with apraxia would not have been the same without the warrior moms and their sweet children who have walked along with us. Here’s a little more about a few of these these special kiddos …

Age: 10 years and 1 month
Grade: 4th
Diagnosed: 2.6 years old
Speech Therapy: Age 18 months to 6 years old
Frequency of Speech Therapy: 1x/week from 18 months to 21 months and 2x/week from 2.6 years old to 4.0 years old. Then we added feeding therapy for a total of 3x/week for about 6 months, dropping feeding therapy and one session of speech therapy, but adding OT until Kate reached about 6 years old.
Type of Speech Therapy: Kaufman, home drills, natural environment, and speech-intensive preschool
Additional Diagnosis: AD/HD
Words of Wisdom: “If you think your child has apraxia, don’t worry…it’s not that serious.” ~Kate, age 10
Mama’s Words of Wisdom: ”Don’t be afraid to ask questions and partner with your therapist; it’s a joint-effort.” Mom and author of SPEAKING OF APRAXIA (Woodbine House, 2012)

Age: 6 years and 8 months old
Grade: Kindergarten
Diagnosed: 3 years old
Speech Therapy: Age 27 months to 5.8 years old
Frequency of Speech Therapy: 1x/week from 27 months to 35 months and 2x/week from 3 years old to 5.8 years old.
Type of Speech Therapy: Kaufman and Speech-EZ hand cues
Additional Diagnoses: Multiple food allergies / eczema and asthma that are in remission
Mama’s Words of Wisdom: If Plan A doesn’t work, relax. There are 25 other letters in the alphabet.

Age: 6 years and 2 weeks
Grade: Pre-K 4 (second year in a row)
Diagnosed: 3 years old
Speech Therapy: Age 22 months to Present
Frequency of Speech Therapy: 2x/week from 22 months to 36 months and 4x/week from 3 years old to present.
Occupational Therapy: 2x/week since age 3.5
Type of Speech Therapy: Kaufman and Hodson Cycles
Additional Diagnoses:  None
Mama’s Words of Wisdom: Trust your gut. Always trust your gut. I’m so glad I didn’t listen to the SLP who told us to get an augmentative communication device because he would never be a primary vocal communicator. She couldn’t have been more wrong. Mama knows best. Remember that.

Age: 5 years and 6 months
Grade: Pre-K 4
Diagnosed: 20 months old
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: 2x/week from 18 months to 3 years old, 5x/week from 3 years old to 5 years old, and 4x/week from 5 years old to present.
Occupational Therapy: 1x/week from 3 years old to 5 years old and 2x/week from 5 years old to present.
Type of Speech Therapy: Kaufman and Sign Language
Additional Diagnoses: Multiple food allergies, eczema, asthma, EOE,  hypotonia
Mama’s Words of Wisdom: You are your child’s best advocate. Educate and know what your child’s rights are and ensure they receive them.

Age: 6 years and 7 months old
Grade: Kindergarten (typical classroom at public school)
Diagnosed: 2.2 years old by Nancy Kaufman with severe apraxia and residual apraxia by 3.7 years old
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: 1-2 times a week from 18 months to 24 months old and 3-7 times per week from 2.2 years old to 4.5 years old. Participated in intensive therapies at Kaufman Children’s Center, STAR Center, Foundations Developmental House, and George Washington University CHAMP camp. Currently receives speech therapy privately once per week and 2 group therapies at school.
Occupational Therapy: Has been done throughout the course of this journey 1-2 times per week (sporadically). Currently OT consult only.
Type of Speech Therapy: Kaufman Speech to Language Protocol, Speech-EZ Apraxia, and CASANA Boot Camp Trained SLP
Additional Diagnoses: Dyspraxia, sensory processing disorder, ADHD
Mama’s Words of Wisdom: Talk is cheap, speech is priceless.

Age: 5 years and 2 months old
Grade: Pre-K 4
Diagnosed: 2 1/2 years old
Speech Therapy: 2 1/2 old to Present
Frequency of Speech Therapy: 2x/week
Type of Speech Therapy: Prompt and Kaufman (in the beginning)
Other Therapies: OT (in the summer), ABA (just started in March)
Additional Diagnoses: Autism, hypotonia
Mama’s Words of Wisdom: It’s a marathon, not a sprint.

Age: 4 years and 11 months old
Grade: Preschool (2nd year)
Diagnosed: 2.4 years old by Nancy Kaufman, but as he began to speak, I was not convinced he ever had apraxia.
Speech Therapy: Age 18 months to Present
Frequency of Speech Therapy: In the beginning, 2x/month. Moved to weekly at around 2.5 years. Twice a week at around 3 years old. 3x/week for the last 6 months.
Other Therapies: Received developmental therapy and OT through EI until 3 years old. Is currently in ABA, social skills, OT, and vision therapy (along with speech).
Type of Speech Therapy: Not really sure!
Additional Diagnoses: Autism spectrum disorder, sensory processing disorder, global developmental delay, and a bunch of other “alphabet soup” type diagnoses.
Mama’s Words of Wisdom: Everything will be alright in the end. If it’s not alright, it’s not the end.

Age: 4 years and 7 months old
Grade: Pre-K 4
Diagnosed: 3 years old
Speech Therapy: Age 23 months to Present
Frequency of Speech Therapy: 1x/week from 23 months to 36 months and 2-3x/week from 3 years old to present.
Occupational Therapy: 1x/week since age 3.5
Type of Speech Therapy: Some Kaufman style therapy as well as Dave Hammer methods. Currently integrating some Kaufman and Speech-EZ hand cues.
Additional Diagnoses: Food allergies, eczema, severe night terrors, and sensory processing disorder.
Mama’s Words of Wisdom: Keep reading and searching for what works for you and in the mean time just love your little one and do your best!

Age: 4 years and 9 months old
Grade: Preschool
Diagnosed: 17 months old – oral apraxia and suspected apraxia of speech / 26 months old – firm apraxia of speech diagnosis.
Speech Therapy: Age 17 months to 4.5 years old
Frequency of Speech Therapy: 1x/week private speech therapy from 17
months to 22 months, 2x/week early intervention speech therapy from 17
months to 3 years old, 3x/week private speech therapy from 22 months
old to 4.5 years old.
Occupational Therapy: 1x/week from 17 months to Present
Type of Speech Therapy: Kaufman
Additional Diagnoses: Oral apraxia, sensory processing disorder, hypotonia
Mama’s Words of Wisdom: Faith- It doesn’t make things easy, it makes them possible.

Age: 3 years and 11 months old
Grade: Preschool
Diagnosed: 3.4 years old
Speech Therapy: Age 36 months to Present
Frequency of Speech Therapy: 2x/week in Priority Preschool, and 2x/week in Private Therapy.
Occupational Therapy: 2x/week in Private Therapy
Type of Speech Therapy: Speech-EZ hand cues
Additional Diagnoses: Sensory processing disorder (suspected), food allergies, and eczema.
Mama’s Words of Wisdom: Sometimes the things we can’t change, end up changing us.

Many thanks to the mothers who helped me out with this project. Your perseverance, love, and work ethic blow me away. Best wishes in your healing journey with apraxia, etc.