Jeanne Buesser EP article

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Dealing with a parent's worst nightmare

Exceptional Parent, The , Feb, 2002 by Jeanne Buesser

When my husband, , and I chose to become parents, we jumped into the

unknown. Our children's well-being and happiness became our concern. The first

of our three sons, Danny, was a healthy, very active boy. He was a very

independent child, smart beyond his years.

Our second son, Adam, was born 2 1/2 years later. Adam was a big baby like his

brother, with no obvious problems at birth, although his tongue stuck out and

his cheeks sagged a little. No one thought there was a problem, except that Adam

never babbled or made sounds as an infant. We just thought he was a quiet child.

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How quickly life can change, though. When he was it little more than 3 1/2,

Danny contracted Burkitt's lymphoma, a rare fast-growing cancer with few

symptoms. This virtually silent killer took the life of our son within hours of

his diagnosis. We were devastated, in shock, unable to comprehend how we as

parents couldn't save our child. We asked, " Why did we deserve this? Why us? "

Ten days after Danny died, I joined a group called The Compassionate Friends, a

bereavement support group for parents experiencing the death of a child. It was

the one place I felt I could express my grief and lean on others who had similar

tragedies. I learned the benefit of being with others who could share ideas for

living. I became the librarian and facilitator of my local chapter. I discovered

that whatever positive support and energy you give to others will return to you

three-fold.

A new start, more challenges

In our grief, we weren't overly concerned that Adam still wasn't talking; we

were trying to deal with Danny's death. Wanting to make a new start, we sold the

house and moved to another. It wasn't until Adam was 2 years old that a

neurodevelopmental pediatrician diagnosed him with a neurological speech

disorder called apraxia of speech.

Children with apraxia of speech are unable to produce the sounds for speech so

as to be understood, despite having the ability to do so. Intelligence level in

most children with apraxia is unaffected. For example, Adam can put together

60-piece puzzles without ever having seen them before. He has a picture-perfect

memory, and can approximate the picture to the puzzle box. But it is also very

frustrating for him. Adam will have tantrums because he can't respond to our

questions with intelligible speech. Adam makes his needs known by pointing or

doing some sign language as we ask him a yes or no question. If that doesn't

work he will show us physically what he means. Adam's apraxia greatly limited

his circle of friends. No one could understand what he wanted and few children

wanted to play because he was " different. "

For Adam, as for most children with apraxia, intensive speech therapy was key in

helping him once apraxia was diagnosed. Occupational therapy was also necessary.

His intensive speech therapy is three to four times a week and includes brushing

his tongue with a toothbrush; trying to get him to blow bubbles, blowing through

straws, blowing candles out; getting him to pucker his lips, trying to repeat

the sounds p, b, m, d, and others, to strengthen and coordinate his facial and

mouth muscles. The therapist recommended massaging his cheeks to tone his

muscles.

Adam now says up to 80 words. We don't always understand him because he cannot

produce some of the syllables/consonants of speech. When the therapy first

began, the only sound that he could say was " mmmm. "

A few months ago, our family had a frightening experience when Adam got lost

while we were on an outing at a large zoo. It taught us an important lesson. I

have since gotten an ID bracelet for Adam, since he cannot speak his name or

give a phone number or ask for help himself.

Adam is now 6 years old and attends a special education kindergarten class for

speech. He writes his name and uses a special computer device to help him

communicate. His speech is slowly getting better. Sometimes it is very fast and

gets garbled.

As a parent, I cannot stress how important it is to educate medical

professionals, teachers and parents about apraxia. When Adam was diagnosed with

apraxia I didn't know where to turn for help. If more professionals knew about

this disorder, many more parents of diagnosed or undiagnosed children would know

there is hope and information that can help them.

Many parents whose children don't talk by age 2 or 3 may not think there is a

problem. I was reminded of that by relatives. They counseled, " The child will

talk when he is ready, don't worry. " If the child isn't diagnosed and doesn't

have intensive therapy early, valuable time may be lost and the speech patterns

can be very hard to correct. As the child gets older, other problems can arise.

Gaining strength from support

How did I learn more about apraxia? A relative sent me a newspaper article about

apraxia and a support group here in New Jersey, the C.H.E.R.A.B. Foundation,

headed by