4 0 FEBRUARY 2002 • EXCEPTIONAL PARENT MAGAZINE

hen my husband, Raymond, andI chose to become parents, wejumped into the unknown. Ourchildren’s well-being and happi-

ness became our concern. The first of ourthree sons, Danny, was a healthy, very activeboy. He was a very independent child, smartbeyond his years.

Our second son, Adam, was born 2 1/2years later. Adam was a big baby like hisbrother, with no obvious problems at birth,although his tongue stuck out and his cheekssagged a little. No one thought there was aproblem, except that Adam never babbled ormade sounds as an infant. We just thought hewas a quiet child.

How quickly life can change, though. Whenhe was a little more than 3 1/2, Danny contract-ed Burkitt’s lymphoma, a rare fast-growing can-cer with few symptoms. This virtually silentkiller took the life of our son within hours of hisdiagnosis. We were devastated, in shock,unable to comprehend how we as parentscouldn’t save our child. We asked, “Why did wedeserve this? Why us?”

Ten days after Danny died, I joined a groupcalled The Compassionate Friends, a bereave-ment support group for parents experiencingthe death of a child. It was the one place I felt Icould express my grief and lean on others whohad similar tragedies. I learned the benefit ofbeing with others who could share ideas for liv-

ing. I became the librarianand facilitator of my localchapter. I discovered thatwhatever positive supportand energy you give to otherswill return to you three-fold.

A new start,more challengesIn our grief, we weren’toverly concerned that Adamstill wasn’t talking; we weretrying to deal with Danny’sdeath. Wanting to make anew start, we sold the house and moved toanother. It wasn’t until Adam was 2 years oldthat a neurodevelopmental pediatrician diag-nosed him with a neurological speech disordercalled apraxia of speech.

Children with apraxia of speech are unableto produce the sounds for speech so as to beunderstood, despite having the ability to do so.Intelligence level in most children with aprax-ia is unaffected. For example, Adam can puttogether 60-piece puzzles without ever havingseen them before. He has a picture-perfectmemory, and can approximate the picture tothe puzzle box. But it is also very frustratingfor him. Adam will have tantrums because hecan’t respond to our questions with intelligiblespeech. Adam makes his needs known by point-ing or doing some sign language as we ask him a

yes or no question. If thatdoesn’t work he will showus physically what hemeans. Adam’s apraxiagreatly limited his circle offriends. No one couldunderstand what he want-

ed and few children wanted to play because hewas “different.”

For Adam, as for most children with apraxia,intensive speech therapy was key in helpinghim once apraxia was diagnosed.Occupational therapy was also necessary.

His intensive speech therapy is three to fourtimes a week and includes brushing his tonguewith a toothbrush; trying to get him to blowbubbles, blowing through straws, blowing can-dles out; getting him to pucker his lips, trying torepeat the sounds p, b, m, d, and others, tostrengthen and coordinate his facial and mouthmuscles. The therapist recommended massag-ing his cheeks to tone his muscles.

Adam now says up to 80 words. We don’talways understand him because he cannot pro-duce some of the syllables/consonants of

W

Dealing with A Parent’sWorst Nightmare

By Jeanne Buesser

Early WarningEarly childhood is a time that is marked with important milestones in development. It is also an

opportune, if not critical, time for helping a child with a disability to make improvements in areas

where there are deficits. In these articles, two mothers discuss the impact of early intervention and

support in their families’ experience with apraxia of speech (also known as developmental apraxia

of speech, verbal apraxia or dyspraxia), a neurologically based disorder affecting the ability to plan,

execute and sequence the movements needed for speech.

Above: Adam Buesser (l.)and little brother, Josh.Left: Danny Buesser

speech. When the therapy first began, the onlysound that he could say was “mmmm.”

A few months ago, our family had a fright-ening experience when Adam got lost whilewe were on an outing at a large zoo. It taughtus an important lesson. I have since gotten anID bracelet for Adam, since he cannot speakhis name or give a phone number or ask forhelp himself.

Adam is now 6 years old and attends a spe-

cial education kindergarten class for speech.He writes his name and uses a special computerdevice to help him communicate. His speech isslowly getting better. Sometimes it is very fastand gets garbled.

As a parent, I cannot stress how important itis to educate medical professionals, teachers

and parents about apraxia. When Adam wasdiagnosed with apraxia I didn’t know where toturn for help. If more professionals knew aboutthis disorder, many more parents of diagnosedor undiagnosed children would know there ishope and information that can help them.

Many parents whose children don’t talk byage 2 or 3 may not think there is a problem. Iwas reminded of that by relatives. They coun-seled, “The child will talk when he is ready,don’t worry.” If the child isn’t diagnosed anddoesn’t have intensive therapy early, valuabletime may be lost and the speech patterns canbe very hard to correct. As the child gets older,other problems can arise.

Gaining strength fromsupportHow did I learn more about apraxia? A relativesent me a newspaper article about apraxia anda support group here in New Jersey, theC.H.E.R.A.B. Foundation, headed by Lisa Geng.Lisa had also founded the Children’s ApraxiaNetwork since her son, Tanner, had been diag-nosed with apraxia. After talking to Lisa,

EXCEPTIONAL PARENT MAGAZINE • FEBRUARY 2002 4 1

he question that everyone seems toask me is, “How did I know therewas a problem at such a young age?”My son Evan is our second child. As

an infant, he babbled normally. When Evandidn’t have any words by his first birthday, wedidn’t panic. We tried not to compare him toour first child, Carly, who seemed to be borntalking and has always been very advanced.When Evan started saying a few words at 15months, we were thrilled. Those words hadsimply vanished at 18 months! People tried totell us that boys talked later, and that Einsteindidn’t talk until he was 5. I knew in my gut thatthere was something wrong.

A very dear friend who is also a neurode-

velopmental pediatrician sat down with Evanat a barbeque, and determined that Evan had asevere delay in expressive language, but at 20months, was at or above age level in ALL otheraspects. He handed me the number for EarlyIntervention, and the quest for answers began.

Early Intervention evaluated Evan at 21months and determined that his expressivelanguage was at a 15-month level. We startedspeech therapy at 22 months. The therapiststarted with the “withholding” approach. Wewould model the word “pretzel” and Evanwould have to repeat the word to get thepretzel. Evan got so frustrated he kicked mein the shins! He could not imitate a handmotion, let alone a sound. After a week or so

of this, the speech therapist realized a differ-ent approach was needed. She suggestedthat Evan had apraxia of speech. I made herspell it, and I hit the Internet before she

Evan’s Story

Evan loves his sister.

T

Apraxia of speech is an often overlooked disorder with no known cause. In defining devel-opmental 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 notsending the correct instructions to move the body parts of speech the way they need tobe moved.”

continued on page 43

continued on page 42

C.H.E.R.A.B. FoundationC.H.E.R.A.B. (Communication Help, Education, Research, Apraxia Base) Foundationis a nonprofit organization whose goal is to improve the health and welfare of allchildren with speech delays and disorders, with a special focus on apraxia or othersevere neurologically based speech conditions. The group describes the “corner-stone” of their efforts as bringing “professionals from different disciplines togetherto provide the most comprehensive evaluations and treatments for these children.”

The Foundation, with the help of the Consortium for Fatty Acids, Omega-3Research Institute, Inc., held the first conference for therapy of verbal apraxia/dys-praxia, “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 withone of the leading teaching/research hospitals here in New Jersey, which has shownan interest in coordinating clinical trials involving the use of essential fatty acids (particularly omega 3 and 6) in children with severe multi-faceted speech/communica-tion disorders.” Says Geng, “We are all very excited about the tremendous potential thisresearch would hold for our children's future to help bring them a voice.”

pulled out of the driveway. After all theresearch I did, all I could do was cry!

I followed up the therapist’s diagnosis with ahearing test and a trip to another neurodevelop-mental pediatrician that my friend had recom-mended. Apraxia of speech was confirmed. Andso started our journey to remediation.

We upped the EI speech therapy to twice aweek and had an occupational therapist evalu-ate Evan next. We discovered that Evan hadsensory integration dysfunction. Just an addedbonus! I read on the Apraxia-Kids LISTSERVthat it is common for this combination to bepresent. With the occupational therapy inplace, we trudged on. Evan was asked to leavehis preschool at 26 months. He had been hit-ting or, as I called it, “communicating with hishands.” We replaced preschool with gymnas-tics and swimming, as the gross motor activi-ties produced the sensory input Evan needed.The hitting continued, but we could never pre-

dict when it would happen.When he was 30 months old we felt that

Evan needed more. We added a session of private speech therapy and temporarilyreplaced OT with a group speech/OT sessiongiven in a preschool environment. Evan’sspeech exploded! He went from 40 to 100words/approximations in about a month! Healso started to combine two words, whichrequires more motor-planning than he had everbeen able to accomplish!

We have him attending twice a week avery small, home-based toddler program,with normally developing children, that heabsolutely loves! He doesn’t seem to be anymore aggressive than any other 2-year-oldboy in this setting. We had determined thathis aggressive behavior gets worse as thenumber of children increases, so we werecareful to select a program that was smallenough to meet his needs.

It has been a very tough year! There were

times that I felt like a shut-in, never leavingthe house in fear that Evan would hit otherkids in frustration. There were times that I feltthat the hitting must be due to bad parenting.Although I know in my heart we are doingeverything we can for Evan, I can’t help butblame myself for not always having as muchpatience as I should. And what about thefuture? The prospects of further learning disabilities, as stated by the experts’ statistics,scare me to death. We will just have to take itone day at a time.

While looking for more information andsupport, I stumbled upon the Children’sApraxia Network. My EI SLP came with me tomy first meeting. While I am generally not agroup kind of person, I found the informationdisseminated invaluable. I also felt a kinshipwith the people attending the meetings, as noone else I knew had a child with apraxia. Ihave since agreed to become the group’s sec-retary and have been known to be seen takingthe minutes in crayon!

While my original objective for becomingpart of the group was totally selfish, the rollercoaster ride has brought me to a point ofwanting to help other parents in line for the ride.

UpdateNow 4, Evan is doing extremely well. He iden-tifies all the uppercase letters and most of thelowercase as well. He knows his address andphone number. He writes his name better thanmost kindergartners. He spent last summer atregular day camp, three full days per week. Itwas a huge self-esteem builder for Evan andhis connected speech improved as well. He isstill difficult to understand at times, but he canusually get his point across.

He attends two preschool programs—Pride,the district’s preschool special program, aswell as a regular preschool—and is succeed-ing in both. At school, Evan also receives indi-vidual speech therapy twice a week and grouptherapy once a week. To address his sensoryintegration needs, he receives one individualoccupational therapy session and a sensorymotor group.

He will attend camp once again this summer,this time with his sister. He will be fine, in fact,he will have an even better time, as the camphas even more to offer than last year’s camp,But I will probably worry all summer! EP

4 2 FEBRUARY 2002 • EXCEPTIONAL PARENT MAGAZINE

HDIS

Circle #31 or visit www.eparent.com/adinfo

Evan’s Story Continued

FEBRUARY 2002 4 3

heartspring

Circle #19 or visit www.eparent.com/adinfo

attending the Foundation’s meeting and feel-ing inspired by the help I received throughThe Compassionate Friends, I decided tostart a support group in my area.

Though we are without Danny, my familylives on with Adam and Josh, who is almost3. I hope someday Adam and Josh will askabout their brother. Josh is speech delayedand has been diagnosed with pervasivedevelopmental delay (PDD) with autistictendencies. The comfort and help that weget from our support group is extremelybeneficial to us and also encourages us tohelp others.

Jeanne Buesser is the President/Founder of the

Apraxia Network of Bergen County, NJ (Web

site: http://community.nj.com/cc/apraxianet-

workofbergencounty).

EP

Resources

A S H A

10801 Rockville Pike, Rockville, MD 20852

(800) 638-8255 • http://www.asha.org

C.H.E.R.A.B. FOUNDATION

657 Valley Rd., Box 339, Gillette, NJ 07933

(732) 871-6013 • http://www.apraxia.cc

Childhood Apraxia of SpeechAssociation of North America

123 Eisele Rd., Cheswick, PA 15024

(412) 767-6589 • Fax: (412) 767-0534

http://www.apraxia.org

http://www.apraxia-kids.org

The Compassionate Friends, Inc.

P.O. Box 3696, Oak Brook, IL 60522-3696

(877) 969-0010 • (630) 990-0010

Fax: 630-990-0246

Worst Nightmare Continued

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 yourgroup, to be placed in as many localpapers as possible.

◆ Find relevant articles for eventual distribution to other parents.

◆ Start a Web page, if possible.◆ Maintain a contact list with names, phonenumbers, addresses and e-mail.