Apraxia

After Matt's ABR confirmed that Matt could hear, Matt's audiologist referred us to a speech and language pathologist (SLP) so we could uncover the reason for Matt's lacked of speech. Another angel enter our life, Donna, Matt's speech therapist from UCLA. Donna evaluated Matt and discovered that Matt had a profound speech disorder: apraxia of speech (AOS).

Here is a definition of apraxia: Childhood Apraxia of Speech (CAS) include inconsistent articulatory errors, groping oral movements to locate the correct articulatory position, and increasing errors with increasing word and phrase length. AOS often co-occurs with Oral Apraxia (during both speech and non-speech movements) and Limb Apraxia.

Apraxia is a neurological disorder characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning. Childhood Apraxia of Speech (CAS) presents in children who are unable to execute speech movements because of motor planning and coordination problems.

What it meant in reality for Matt - it took him YEARS to be able to talk. Donna, his UCLA SLP, told us that until he said his first word, no one would know if he would ever speak. He didn't say his first word until he was 25 months. But at least he was able to talk eventually. Not all children with this disorder do.

It was ultimately determined that Matt had global apraxia which caused difficulties with eating, speaking, walking, and more. Basically, it impacts everything he does that involves voluntary muscle use (as opposed to involuntary - that his body does on its own - like breathing and heart beating). A true challenge of a disorder.

I researched the disorder and found some information about supplements that seemed to help other children with this disorder - fish oil - or more specifically - essential fatty acids found in fish oil (and other things). Fish oil also seems to be a heart healthy supplements. Figuring that it might help and wouldn't hurt (my standard for all of the therapies, traditional and non traditional, that we've tried with Matt), we started him on fish oil.

Donna also suggested that music therapy might help him which he loved.

Armed with more information and suggested therapies, exercises, and supplements, we began the uphill battle to help Matt learn how to speak.

We also had another piece of the puzzle that was Matt. Each piece of the puzzle helps us plan a strategy which will enable Matt to achieve his own personal potential.

Bat Ears

Reviewing videos of Matt as a baby, one thing that hits you is how quiet he is. Oh, he laughed - loved to hear him giggle. His screaming was loud enough for our neighbors to hear his unhappiness.

He could make noise but he hardly babbled, cooed, garbled or made any of the beginning language sounds with which most babies address their world.

In the midst of our day to day life with him, we never noticed just how quiet he was. His doctor did notice though and sent us to see an audiologist.

Matt screamed as if the earphones were on fire when the audiologist attempted to put them on his head. Plan B - we were sent to a dimly lit room. In two corners were glass cases each in which housed a large stuffed animal. One was a monkey with cymbals and one an elephant.

The doctor had me hold Matt in my lap. He showed us how the monkey and elephant each made noise. He explained that he would be in the other room watching Matt's reactions to the noises. He asked me to not respond to the noises, to just sit still and look straight ahead so that I would not influence Matt by my reaction.

The doctor left the room. When the first animal started to make noise, Matt pressed himself into me and started to tremble. When either animal made a noise, Matt pressed back against me harder.

After a number of attempts to have Matt look at the animals as they made noise, the doctor returned to the room. He was concerned by Matt's lack of response to the noises. The doctor scheduled Matt to have a sedated auditory brainstem response (ABR) test.

Auditory brain stem response testing is a painless and harmless test involving the measurement of electric responses recorded from the hearing nerves and brain by means of small, disk-like electrodes taped behind each ear and on the forehead. Matt was whisked off for his testing while Chris and I waited. I know that my stomach churned and burned while I clutched Chris' hand and awaited the results.

The audiologist joined us in the waiting room after he completed the test. He told us that at the start of the test he was prepared to discover the extent of Matt's hearing loss. Never in his years of practice had he been proven so wrong. Not only did Matt NOT have any hearing loss, he hears better than most people.

Elation and relief swept through me. Where I had feared I had a baby with a hearing loss, I now knew I had a baby with bat hearing. Over the years, we have found that having extremely acute hearing can be painful for Matt, but on that day, I was filled with relief that we had escaped one challenge on our journey with Matt.

The audiologist referred us to a speech therapist. We still needed to discover why our little guy was such a quiet child.

Neural Plasticity

Matt's first year of life was filled with the usual examinations and inoculations of a typical baby, and additional tests, examinations, procedures leading up to his heart surgery, and then follow up tests, examinations and procedures following his heart surgery.

Because of the complications in connection with his heart surgery and the seizures that followed, it was recommended that Matt have a sedated MRI to determine the extent of his brain damage. We saw the neurologist to discuss the results of the MRI.

September 11, 2001 is a date that most Americans will remember with sadness. For me, the day before, September 10, 2001, is a date I'll always remember with joy. The neurologist told us on that date that the MRI had detected no permanent brain damage. Oh happy days!!

We knew that he experienced oxygen deprivation during/following surgery and the neurologist was fairly sure that he also experienced oxygen deprivation in utero/at delivery. Poor little guy was dealt some pretty hard cards BUT it could have been so much worse. He did not have any permanent brain damage.

The neurologist explained due to neural plasticity - the brain's amazing ability to change and rewire itself - that no one knew what Matt would ultimately be able to do. We all knew he'd be delayed and would have a tough road ahead - but no one knew what the end of the path would be.

I had my mission in front of me - to help Matt rewire his brain. It is a task we are still working on to this day!