Dealing with a parent's worst nightmare. (early childhood).

When my husband, Raymond, 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.

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 Lisa Geng. Lisa had also founded the Children's Apraxia Network since her son, Tanner, had been diagnosed with apraxia. After talking to Lisa, attending the Foundation's meeting and feeling inspired by the help I received through The Compassionate Friends, I decided to start a support group in my area.

Though we are without Danny, my family lives on with Adam and Josh, who is almost 3. I hope someday Adam and Josh will ask about their brother. Josh is speech delayed and has been diagnosed with pervasive developmental delay (PDD) with autistic tendencies. The comfort and help that we get from our support group is extremely beneficial to us and also encourages us to help others.

Apraxia of speech is an often overlooked disorder with no known cause. In defining developmental apraxia of speech, the American Speech-Language-Hearing Association (ASHA), describes its effect as: "The child knows what he or she wants to say, but the brain is not sending the correct instructions to move the body parts of speech the way they need to be moved."

C.H.E.R.A.B. Foundation

C.H.E.R.A.B. (Communication Help, Education, Research, Apraxia Base) Foundation is a nonprofit organization whose goal is to improve the health and welfare of all children with speech delays and disorders, with a special focus on apraxia or other severe neurologically based speech conditions. The group describes the "cornerstone" of their efforts as bringing "professionals from different disciplines together to provide the most comprehensive evaluations and treatments for these children."

The Foundation, with the help of the Consortium for Fatty Acids, Omega-3 Research Institute, Inc., held the first conference for therapy of verbal apraxia/dyspraxia, "Verbal Apraxia/Dyspraxia and Essential Fatty Acid (EFA) Supplementation: A New Potential Therapeutic Intervention" in July 2001. According to Lisa Geng, president and founder of C.H.E.R.A.B., "We are currently exploring working with one of the leading teaching/research hospitals here in New Jersey, which has shown an interest in coordinating clinical trials involving the use of essential fatty acids (particularly omega 3 and 6) in children with severe multi-faceted speech/communication disorders." Says Geng, "We are all very excited about the tremendous potential this research would hold for our children's future to help bring them a voice."

Tips from Jeanne for starting a support group

* Find a public place to meet.

* Write a press release--who, what, where, when and why--to help promote your group, to be placed in as many local papers as possible.

* Find relevant articles for eventual distribution to other parents.

* Start a Web page, if possible.

* Maintain a contact list with names, phone numbers, addresses and e-mail.

Resources

ASHA 10801 Rockville Pike, Rockville, MD 20852 [phone] * http://www.asha.org

C.H.E.R.A.B. FOUNDATION 657 Valley Rd., Box 339, Gillette, NJ 07933 [phone]. http://www.apraxia.cc

Childhood Apraxia of Speech Association of North America 123 Eisele Rd., Cheswick, PA 15024 [phone], Fax: [phone] http://www.apraxia.org http://www.apraxia-kids.org

The Compassionate Friends, Inc. P.O. Box 3696, Oak Brook, IL 60522-3696 [phone] * [phone] Fax: [phone] http://www.compassionatefriends.org

Jeanne Buesser is the President/Founder of the Apraxia Network of Bergen County, NJ (Web site: http://community.nj.com/cc/apraxianetworkofbergencounty).