Apraxia

Well, here I am finally writing the post about what we have been dealing with the past few months.  There is so much to say, so many emotions and feelings that I am going to try to hold back for now.  I am not sure where to even begin, but I’ll try to stick to the facts.

At the end of June I made an appointment with Eli’s pediatrician because I was concerned about his speech.  I knew that he understood everything I was saying and followed directions really well.  At that point he did talk, but it was mostly one to two word statements (milk, juice, outside, blanky, etc.).  He could repeat really well and could read words from a book and pronounce them perfectly.  He just didn’t talk.  No conversational talking, no asking questions, etc.  I talk to him all day long and most of the time he did not answer me verbally.  For example, I would say, “Eli do you want to go outside?,” and if he did he would go to the door. 

When we saw Dr. Van Howe he said that it sounded like Eli had an expressive language delay and referred us to a speech pathologist.  We saw Jayne (our SLP) on July 5th for Eli’s first evaluation.  At the end of the 2 hours she said that she was pretty sure that Eli had Apraxia, Oral Apraxia, Dyspraxia and Hyptonia.

Apraxia – a neurological motor speech impairment – a breakdown in the transmission of messages from the brain to the muscles in the jaw, cheeks, lips, tongue and palate.  With apraxia, a child knows what he or she wants to say, but there is a roadblock obstructing the brain to the mouth.  The brain says, “Speak.” But the muscles of the mouth either don’t “hear” it or choose to ignore it.

Oral Apraxia – difficulty executing and sequencing oral movements, such as licking your lips.

Dyspraxia – motor coordination disorder of the body.  Children with apraxia may not do well at tasks requiring the brain to plan motor activities (i.e., imitating gestures, learning how to pedal a bike).

Hyptonia – low muscle tone

Eli is now seeing Jayne once a week for 45 minutes, and will continue to do so indefinitely.  He is enrolled in our local school district’s Early Childhood Developmental Delay Preschool program, where he’ll go five days a week from 8:45 a.m. – 11:30 a.m.  He’ll receive speech therapy at school and most likely occupational therapy as well.  I give him a teaspoon of Omega 3 Fish Oil every night, and have recently started giving him a nutritional supplement.

My entire world has been turned upside down and I am facing the greatest challenge I’ve yet had to face.  This is nothing compared to what we are facing now.  I have feelings of anger, fear, sadness and have constant emotional pain.  I feel very alone.  I guess I was naïve and thought that Eli had already been through enough with his FH/amputation/prosthetic leg, but I realize that life does not work like that.  I know he’ll be okay and I know that God has great plans for his life.  He has a long road ahead of him…it will most likely take years for him to learn how to talk.  But he will, and oh I just can’t wait to hear what he has to say.