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Charge Association Workshop AGrowing Up with CHARGE@ Kim D. Blake MB, MRCP, FRCPC Assistant Professor of Pediatrics Memorial University St. John=s, NF Canada A1B 3V6 Tel: 7097784605 Fax: 7097222039
Tots to Toddlers Coming to ter ms with the diagnosis of CHARGE association and its consequences is a major issue. At the CHARGE association workshop, one parent described her biggest concer n as knowing Awhich questions to ask,@ since her child has so many problems she does not know wher e to start. Parents who have older children in the family understand Anor mal parenting issues@ and see many similarities between their older children and their child with CHARGE. If your CHARGE child is your first bor n, then working on Anor mal parenting@ can be difficult, but tur ning to other families with CHARGE tots can be helpful, as we found at the meeting. Many of the families who have children in this age group profit a great deal from the experiences of parents with older CHARGE children. It=s at this age that parents realize that organization, coor dination, an d being Ain charge@ are their primary responsibilities. This was highlighted by one of the tot=s parents who keeps a log of infor mation to pass onto each doctor when she attends appointments, because in her experience Anot many doctors know much about CHARGE.@ It is important to obtain a good pediatrician who can help you with the coor dinating task. The following suggestions were ma de by our group:
1.
Speak to your child=s early intervention teacher. He or she will be familiar with the local district, and can often put you in touch with a doctor who will be willing to take on a file that weighs a ton and a child with multiple issues that they may have not yet encountered.
2.
A good pediatrician must work with the whole family and their needsand have time.
CHARGE Summer Institute – 1996 Proceedings
3.
The pediatrician does not need to be an expert in CHARGE but must be willing to learn with you and acquire knowledge about it over time.
A number of parents are still told that their child will be severely handicapped, retarded, and probably not benefit from early intervention. We know that this is not the case. We need to strive for successful programming and multidisciplinary approaches, and to get therapy into the home. The children in this group can be described as the lucky ones. They have therapy based both in the office or therapeutic center and at home. Their home programs are multidisciplinary and include regular case conferences, involvement with parents, and individual program plans (IPP=s). A diary is kept so that therapist can write down their notes and transfer information from one to another. This works well for betweenconference communication.
Medical Issues If there are any acute changes in your child=s wellbeing or behaviors, explore medical causes first. Exclude constipation, urinary tract infections, recurrent ear infections, aspiration, gastritis, retinal detachment, shunt blockage and heart conditions before looking at possible nonphysical causes for behavior change.
Behavior Behavior problems are a significant issue at all ages. At the younger ages, many of the behaviorssuch as head banging, biting and self abusive behaviorsare often the result of difficulty in communication. Finding a good communication system(s) for your child is of great importance. Behavior problems in this age group are similar to those experienced with any Anormal@ child. I use that term guardedly because I see every child as an individual and there=s no such thing as pure normalcy. Many problem behaviors have a regularity to them. They happen because of an event. They occur and are followed by a consequence. In our group, we looked into documenting problem behaviors in a diary format and working out where behaviors are stemming from, exploring the gains a child makes from problem behaviors and trying to reverse them. Reversal is sometimes difficult. Try to act on a child=s positive behaviors and ignore the negatives, however difficult this may be. I was given a description of a child who regularly headbanged. While headbanging, he would be picked up, would become involved in the family conversation, and would be cuddled and rocked. As a consequence, he would repeat the behavior in order to get the attention that he needed.
CHARGE Summer Institute – 1996 Proceedings
The parents needed to ignore the behavior, which was difficult, since the head banging was quite substantial. They accomplished this by moving the child to an area where he would be safe while headbanging picking him up only when he wasn=t engaged in the behavior. Again, this wasn=t as easy as it sounds, but it worked over a twoweek period. He stopped headbanging, but, unfortunately, he started biting. His underlying problem was a need to assert himself and a wish to make choices. When a communication system was put into placepictures, stickers, and, most importantly, the ability to make choicesthe biting also subsided. For this age group, parents realize that they are the experts. They will sometimes try anything that is new and available. Remember, techniques can work for some children and not for others. Parents need to be aware that their child is an individual. What may work for another=s child may not work for their=s.
Toddlers to Preschool: The Terrible Two=s The terrible two=s often hit late in CHARGE. I know many parents who are still going through this phase, when a child starts to become more assertive and wants to be Ain charge,@ with their sixyearolds. Such circumstances can be difficult to handle in a child with multiple sensory impairments and multiple medical issues. With many CHARGE children at this age, the medical issues are yet to be resolved; there are still operations pending and the parents are still anxious about their child=s wellbeing. It is important to talk to other parents who have special needs children. Advocating for your child can be done more easily in a group. Setting up local groups may help parents obtain preschool facilities and access areas of health care. Testing this age group with standardized testing methods is non productive. There are no psychological tests currently available for children with the combination of problems of a CHARGE child. The children often look significantly delayed. At this stage, many are not walking (average walking age for a CHARGE child is four to five). Walking is certainly delayed, but often not disordered. It=s important to have access to physiotherapists, as well as speech and language pathologists, occupational therapists, and psychologists. The importance of this access is highlighted in the case of Megan, age two and onehalf, and the fact that she is now walking. When I last saw Megan, at twentytwo months, she was typically backcrawling with her face upwards. I was asked whether this was an appropriate way to move
CHARGE Summer Institute – 1996 Proceedings
or whether it should be stopped. In my opinion if a child can get around and can access her environment safely, then one should only stop her; if a medical condition prohibits it. With CHARGE, most of the children are hypnotic (i.e., low toned), and they need help from a physiotherapist in gaining confidence. Megan had a very structured program which worked for her.
School Plus: Five to Eight Years The beginning of school is a hard time for any parent. Planning for this event with a child who has multiple needs should begin at least a year before school starts. In choosing a school, some of the simple criteria apply: its distance from home and the issue of transportation to and from school. Go and visit possible schools. You may have to compromise by selecting a school that has fewer facilities, but is more conducive to your family=s lifestyle. At this stage of life, your child still looks severely delayed in all areas of development. Your child may only have been walking for the past year, may still not be toilet trained, and may be having huge problems with communication. The early intervention programs you have utilized thus far will stop which means that you will have to familiarize yourselves with a whole new structure and a new setting. Working cooperatively with educational personnel is important. Working together to design an individualized program plan (IPP) is vital. This program should be read regularly and not put away in a drawer. It is important to include the simplest of items, such as giving your child a chance to make choices and scheduling when in the day they can do this. Watch your child in his or her educational setting. It may be difficult to be present in the classroom, but not impossible. Following your child through a typical day can give you enormous insight into how your child is learning. An IPP should always be changing and must have achievable goals. Its greatest chance of success rests in the hands of the people that write it and not in the child using it. At this age, medical issues are becoming less intense, although they may still require multiple hospital visits. Nevertheless, it is still important at this stage not to forget that there could be medical problems underlying your child=s outburst behaviors. The delays that your child exhibits have been documented over time. However, I look at the child with CHARGE as a latedeveloper in all areas of growth and development. They seem, in many respects, to get there in the end. They can and want to be educated and they have insight into the frustrations that go with this. I certainly would not label this
CHARGE Summer Institute – 1996 Proceedings
group of children as having mental retardation. Many professionals in different fields agree with me. It is a difficult statement to support when presented with a child with such delays. We know that as these children move through school, especially children who have had better preschool programming, their learning is progressive. They can and want to continue learning at a higher level. As your children grow older, they may outgrow their home and educational settings. The classic story that was related to me at the meeting was about a boy who was exhibiting significant behavioral outbursts and problems. His parents spent many years trying to alleviate this. When they eventually changed his school programming and moved him to a school for the hearing impaired instead of a school for more severe developmental disorders, he became more outgoing, more settled, and far more content.
Nine Years to Adolescence To me, ages nine to adolescence are the most challenging time for students with CHARGE. Their needs and their desires may still not be defined. Their communication systems may not yet be in place and they are approaching the age of puberty and yet more change. Behavior problems are a big issue at this stage: outbursts, tantrums, selfabuse, and noncompliance are common. There are less likely to be medical causes for problems in this age group and more likely to be psychological concerns. This needs to be dealt with through a team approach with a psychologist. Two families in the group had psychological support services and their children were doing much better than some of the others. A psychologist will be look at programming, diary keeping, and behavior management and investigate the origins of behaviors and what promotes them. Students at this stage are very bright and the hidden agendas that underlie their behaviors can be difficult to uncover. This is why other professionals need to be involved. Access to a child psychologist is difficult but most schools have guidance counselors and educational psychologists who are trained in areas of behavior management. As long as you have access to a person that=s had some training in child behavior and development, their title is not important.
Family Support
CHARGE Summer Institute – 1996 Proceedings
It is important for parents to work on behavioral management with the help of a professional in that field, such as a psychologist or a social worker who has expertise in family counseling. Many families regard this as Acouch psychotherapy,@ and dismiss the idea because their children will not be able to talk about their problems. However, a parent can explain their child=s behaviors to a professional and give an account of what is causing distress within the family. The psychologist can piece the picture together and help parents understand the source of the behaviors and then work with them on plans to make changes. Consistency among the adults involved is often one of the first steps. Time out for parents is important. Respite care and time for yourselves can be hard to obtain. Although social services are limited, children with multipledisciplinary needs must play and have breaks from their parents too. Relatives are not always the best answer for this support and my advice is to organize a network of support workers.
CoMorbid Diagnoses We discussed the three AD=s@: attention deficit, obsessivecompulsive disorder, and pervasive developmental disorder (autism). I=d be cautious before giving a student with multisensory impairment any of these labels. There was a child in our group with some classic attention deficit symptoms who had been treated with medication with great success. Caution in diagnosis is advisable for students who show symptoms only in certain settings. Before embarking on drug therapy it is important to observe your child in different settings, plan a behavior modification approach, and add structure to his or her day. If there is a dual diagnosis, the initial diagnosis being CHARGE and the secondary diagnosis being autism or attention deficit and hyperactivity, the drugs that are often used are not cures. Drugs may be needed in smaller dosages than in other children for whom the behavioral disorder is a primary diagnosis. A careful understanding of the child=s underlying medical conditions is important. Your child may still have cardiac concerns and may respond adversely to amphetaminebased medications (i.e., Ritalin) or to the clonidine type of medications. Monitoring heart rates and rhythms on a regular basis may be appropriate for your child. Many children with dual sensory impairment may have typical autistic behaviors, but this does not mean that your child is autistic. However, some of the behavioral approaches for autism and PDD can be beneficial to a child with CHARGE. These approaches include instituting routine so that your child knows where he or she is in time and space, and
CHARGE Summer Institute – 1996 Proceedings
planning for change. I recommend the use of tactile aids such as velcro boards which enable a child to predict what is coming next by the object on the board and the use of reward charts to acknowledge a child=s good behavior and compliance. This is the start of a basic behavior modification program.
Letting Go Letting go is important at this age, as well as in the late teenage years, and early twenties. Although we did not discuss this age group, it is important to mention a couple of significant concerns that I have. Firstly, what does the student do when he or she leaves school. As an example of eventual good transition programming, let me tell you about Allan; who comes from England and is now twentythree. He spent the first two years after he left school with no programming. His behavior deteriorated. He went from being a passive, likable young man with many interests to a very introverted person with severe outbursts. He made it known to his mother that he wanted to go to college. He wanted to learn and he was not doing that in is home environment although he attended an institution for the severe learning disabled. His mother became very assertive and petitioned the educational authority and local government on his behalf to gain access to the local college. Since Allen entered college, he has made some wonderful gains in this basic education. He is learning skills for life which will take him on to independence. Although he will never be totally independent, he is working towards living in a group home, a facility where Allan can be independent from his parents, but have access to adult support when needed. Allan is happy with this. Anyone who met him at the Portland conference will remember a very upstanding 20yearold playing with his video gamespart of a family, and certainly part of society.
Medical Issues in the Older Teenagers Parents have asked me about whether their child will enter normal puberty. Most of the children do seem to enter puberty, although it is delayed. Some of them show a varied amount of secondary sexual characteristics. It is important that an endocrinologist be involved with your child at this stage and even earlier, especially if there are concerns about testicular descent. I heard at the conference of a young lady named Margo who is seventeen and has a bone age of twelve, poor growth and secondary sexual characteristics, and no periods. Her mother asked about hormones, being concerned about their long tem effects on her child. Often we start children on hormone replacement therapy because their
CHARGE Summer Institute – 1996 Proceedings
hormone levels are insufficient. Replacement therapy brings them up to the normal levels that other young adults would have at their age. There is a need for more research in this area. I=m interested in collecting information from children over the age of ten who have had hormone stimulation tests in order to look subjectively at the children=s responses. Most of the children in English who have been tested for growth hormone deficiency do not have low levels. However, I do think that some of the children have low levels of the sex hormones and would benefit from replacement therapy. It must be remembered that hormones bring with them their own challengesincluding fluctuations in temper. When Margo eventually starts estrogen replacement, her mother may loose the passive, sedate little girl that she has now.
And Finally... I had enormous enjoyment from the meeting and took away many unanswered questions to be pondered. As parents, you have inspired me to continue my research in CHARGE and I thank you all for the opportunity of meeting with you and your children.
The 1996 Summer Institute on CHARGE Association was held on August 45, 1996, in Woodcliff Lake, New Jersey. The proceedings were published as a joint cooperative effort between the New York and New Jersey State Technical Assistance Projects serving children who are deafblind and their families and DBLINK: National Information Clearinghouse On Children Who Are DeafBlind.
CHARGE Summer Institute – 1996 Proceedings