JKP authors Judith and Carson Graves, authors of Parents Have the Power to Make Special Education Work, sat down with Michael Brian Murphy to discuss the new edition of NLD from the Inside Out. Offering invaluable advice for teenagers and young adults with Nonverbal Learning Disabilities (NLD), this book explains what NLD is, how to understand your NLD brain, and how to thrive socially and academically. The book also includes guidance for parents, teachers and therapists on the issues that people with NLD want them to know. NLD from the Inside Out is the only book to offer first-hand teen perspectives on NLD, combined with useful, practical advice.
Karen Watchman, Lecturer in Dementia at the Alzheimer Scotland Centre for Policy and Practice, and editor of the new book Intellectual Disability and Dementia, joined us for a short interview. She talks about how she became involved in the field, and gives her advice for those working with and supporting people with intellectual disabilities and dementia.
How did you get involved with this area of study?
I spent many years as Director of Down’s Syndrome Scotland where I worked alongside families and people with Down syndrome of all ages. There was even less research conducted about dementia in people with intellectual disabilities at that time which spurred me on to complete a Masters degree in Dementia followed by a PhD researching the experiences of people with Down syndrome and dementia. So, whilst I have an academic interest in this area I am very much grounded in practice and in ensuring that information is made available in an accessible format.
My Great Aunt had Down syndrome and, unusually for the period in which she grew up, lived at home with family into her adult years. So it came as no surprise when research started showing the link between quality of life and increased life expectancy.
People with disabilities are living for longer and as a result we are seeing more people with intellectual disabilities than ever develop dementia as they age. What training is available for carers and professionals to help deal with this increase?
Typically in the UK, staff, volunteers and carers supporting people with an intellectual disability do not have training in dementia. Similarly, staff supporting older people with dementia do not have training in intellectual disabilities, despite many younger people (especially with Down syndrome) being diagnosed, and some moved inappropriately to care homes for older people.
This is slowly starting to change but there is still not enough interdisciplinary exchange of learning. Training and courses that I deliver where staff attend from across sectors are very valuable, as participants learn from each other. However, it is not just intellectual disability or dementia services – equally important, especially as dementia progresses, is the input of all allied health and palliative professions and that there is partnership working with all services talking to each other and to carers, and all being consistent in their approach.
Are they any particular methods or activities which are helpful in explaining a dementia diagnosis to someone with an intellectual disability?
This is an area addressed in the book and is something that doesn’t receive enough attention currently. As a result there is inconsistency in practice. Information about a diagnosis or suspected diagnosis of dementia is not routinely shared with the person who has an intellectual disability, despite UK dementia strategies maintaining that everyone has a right to know of their diagnosis. We need to think more about how this can be done with people who have an intellectual disability and embrace non-verbal communication methods too.
What should staff or carers be aware of in order to be able to support people with an intellectual disability and dementia?
Someone who already works alongside people with an intellectual disability is likely to have been trained to support people to maximise their independence, to work towards independent living or community involvement to the best of their ability. Their work will be person centred and will be focused on the needs of each individual. There is an element or re-learning required by staff when the person with an intellectual disability has a diagnosis of dementia. The work should still be person centred and based around the individual but as capacity and cognitive ability change there is an associated need to change the way that staff, volunteers, family and friends provide support.
Carers also need information about interventions – this may or may not include medication. Social interventions such as meaningful activities and life story work are also essential. Awareness of contraindications with medication is important especially as many people with intellectual disabilities are over-prescribed anti-psychotic medication.
Specific knowledge of dementia that needs to be shared with staff, volunteers, family and friends include: what dementia is, different types of dementia and how each affects the person, early signs (this can differ from early signs in older people without an intellectual disability), environmental adaptation to ensure that accommodation is appropriate to the persons changing needs, communication changes and physical changes that will occur as the condition progresses. I am often asked for help with what is perceived as a behavioural issue, but with appropriate information or training there is a realisation that if we get the environment, communicating and our approach right – this is what has caused the changes in behaviour. We need to work out the triggers and acknowledge our role in this – often a change in behaviour is caused by us not understanding the person and not providing appropriate support.
Speak, Move, Play and Learn with Children on the Autism Spectrum: Activities to Boost Communication Skills, Sensory Integration and Coordination Using Simple Ideas from Speech and Language Pathology and Occupational Therapy by Lois Jean Brady, America X Gonzalez, Maciej Zawadzki and Corinda Presley is a practical resource brimming with ideas and guidance for using simple ideas from speech and language pathology and occupational therapy to boost communication, sensory integration, and coordination skills in children on the autism spectrum. Suitable for use in the classroom, at home, and in community settings, it is packed with easy-to-follow, goal-oriented activities and lesson plans.
The goal of each lesson is to obtain skill sets that will allow children to be active participants in their day, through fun and challenging activities. The activities promote development by structuring opportunities for engagement while facilitating language and skilled motor production, and are presented with suggested variations that can be used to work with a range of low-level functioning individuals and higher-level individuals functioning with greater independence.
This activity will help students to organize oral motor sensation and coordination, and to strengthen blowing, chewing, sucking,and diadochinetic skills. The ‘Oral Motor Fun’ activity also supports labeling, verb+ing, fine motor, and group pragmatics.
Christy Oslund, Co-ordinator of Student Disability Services in the Dean of the Students’ Office at Michigan Technological University, shares helpful tips for parents on preparing students for a new school year and future independence.
Preparation for Independence
As students gear up for another year of school—perhaps even their last year or two before heading off to college or other independent goals—families tend to get caught up in last minute preparations. Do they have adequate school supplies, is it time to buy a scientific calculator, what will the schedule look like for classes and for after school activities? It is easy to get buried in details.
We need to remind ourselves to step back and remember the big picture. We need to help our students be prepared not just for the immediate school term but for the future when they will be required to live more independently. Consider the following questions:
- Is my child able to take their medication reliably without reminders?
- Does my child know how to wash their own laundry?
- Could my child go shopping alone and find their own basic necessities?
- Have we practiced the child getting up and ready for school without assistance/wake-up calls?
- Has my child learned to shop for and cook a few simple meals?
- Can my child wash up after preparing a meal?
Until a person has had the opportunity to practice all these steps towards independence, he or she is not really ready for life away from home, whether that be in a trade school, college, university, or first job. Particularly with high functioning children who are very smart, we can easily forget how important these other day to day life skills are for the young person to grow into a successful adult. Rather than trying to take on teaching all of these skills at once, consider working on them one at a time. It will depend on your child which of these steps will come easiest and which will require the most work.
Consider starting with the step that is likely to be the least difficult for the individual child you are working with, so that your student can build on success as they approach the next goal. If for example, your child is naturally starting to get up in the morning for school, allow that to become an independent activity where he or she is responsible for getting out of the home on time. Realize that this may mean that your child will be late a few times; this is the price that has to be paid in helping your student work towards independence. Once your child leaves home, there will not be anyone getting them out the door on time and this is a skill that is best learned before they are expected to act like an adult.
On the other hand, if your child has shown an interest in cooking, help them identify a few simple meals they would like to cook. Take them shopping and walk them through the process of choosing ingredients for the meal, paying, taking home the shopping, and preparation. For young people who find that process very involved, you may want to make clean up after the meal a separate lesson and learning opportunity.
Remember that almost everyone finds the most effective way to learn is to be given a chance for practice, with necessary explanation/information being provided by someone who has more experience with the skill being learned. If one wants to learn to milk a cow, one would look for a dairy farmer who has experience with milking; if one wants to learn to cook a meal, it helps if the person teaching has cooked before.
At the same time, parents and guardians can show the willingness to learn new skills themselves. If no one in the home is practiced at cooking a meal then helping the child prepare by learning this skill together—perhaps in a basic cooking class, or from a beginners cook book—demonstrates that learning new skills is always possible, and often necessary, no matter what stage we are at in life. By learning side by side with your child, you can demonstrate how to solve problems along the way:
- How will we prepare for shopping?
- How do we choose ingredients?
- How do we decide which pan to use?
- How can we tell if the heat we are using is too hot or not hot enough?
When more mature family members demonstrate how to solve problems as they are encountered, they also set another example that the child can learn from and call on later in life.
A new school year is an exciting, anxiety producing time of year. It is also a reminder that a child is continuing to grow towards eventual independence. Being mindful to include education and practice with the life skills needed outside of school is just as important as helping a child academically prepare for their future. Just as we wouldn’t expect a child to spontaneously start reading without previous education just because they have left home, we cannot expect them to suddenly know other life skills such as cooking, or getting up without reminders, just because they’ve moved. Use each day to practice these steps towards independence and you can ensure that your child has all the skills necessary to be successful.
Christy is the author of Succeeding as a Student in the STEM Fields with an Invisible Disability: A College Handbook for Science, Technology, Engineering, and Math Students with Autism, ADD, Affective Disorders, or Learning Difficulties and their Families and the forthcoming Supporting College and University Students with Invisible Disabilities: A Guide for Faculty and Staff Working with Students with Autism, AD/HD, Language Processing Disorders, Anxiety, and Mental Illness both published by Jessica Kingsley Publishers.
Specialized Academic Instruction Teacher (SAI) Elle Olivia Johnson shares some tips for parents from her NEW book, The Parent’s Guide to In-Home ABA Programs: Frequently Asked Questions about Applied Behavior Analysis for your Child with Autism, on navigating the confusing language of Applied Behavior Analysis (ABA).
Whoa. Let’s slow down. You CAN do this!
Learning that your child has, or is considered at-risk for an autism spectrum disorder, can be an emotionally draining, confusing, and stressful experience. Along with these challenges faced by parents and families, there are languages to master: the languages of Applied Behavior Analysis (ABA), in-home therapy, and behavior. You never thought you’d need these skills, right? Well, life is full of surprises, and the surprise that you and your family received is that you will be learning some unique and important information. Rather than getting caught up in the amount of new stuff you’re being asked to learn, keep it simple by focusing on learning a little about each part.
1. Learning about applied behavior analysis and what an in-home ABA therapy session looks like, includes, and what is expected of you.
In-home ABA program supervisors and therapists will work closely with you to teach you about ABA and how the techniques in the ABA “toolbox” can help your child and your family. You will learn how ABA is used to teach your child, how you can use the same teaching techniques in your day-to-day lives, and how progress is assessed and documented. You will also receive information about the purpose of each task your child is being asked to do, why these specific tasks have been chosen, and how each task leads to new skills. View this portion of your ABA education a little like looking at a map. You can choose to look at a map from space, seeing just a blur of each area. Click a little closer, and you can see states and lakes. Move in closer still, and you will see individual street names and landmarks. Your ABA learning will feel a little like this. A big blur in the beginning, but clarity as you become more familiar.
2. Learning the lingo! What do all those acronyms mean?
Like I said….whoa. ABA lingo is the shorthand educators and ABA professionals use to keep notes and instructions simple. I know that if I jumped into the role of a nurse, I would have absolutely no idea what the medical notes and codes meant. It’s the same feeling you have as you are learning about ABA. Don’t worry, there will not be a test on this, but you should be familiar with the specific abbreviations your ABA provider uses, especially if you want to learn to take data yourself. It’s ok to use a cheat sheet….but soon, you won’t need it. You will become as familiar with ABA terminology as you are with the acronyms you use in your work life.
3. Looking forward
Life sometimes brings you to places you never, ever dreamed you would travel. You are there for a reason, and when things seem overwhelming, confusing, or impossible, remember that you are the absolute best person, in the entire world, to help your child. They cannot do it without you, the ABA provider cannot do it without you, and the in-home ABA team NEEDS you. Learn as much as you can, ask millions of questions, and if you feel you want to go further in your learning about ABA, ABA therapy, or behavior, look into expanding your education. Keep in mind that as an advocate for your child, it is also your job to carefully evaluate claims about therapies and cures for autism. Stick to peer-reviewed, research-based, reputable research claims. Anecdotal evidence is not equivalent to well-conducted research.
Finally, take a deep breath, smile, and enjoy your child. Things are going to be fine. This whole confusing ABA journey is about to get a lot simpler.
Having a brother or sister with special needs can create life-long emotional problems for the siblings unless they receive a great deal of one-to-one attention and love. If the parents have to spend long periods of time in an intensive care nursery with a new baby or at doctors’ or therapy appointments with a child or teenager, grandparents can play a very important role.
If the grandparents live close by, they can help by driving brothers and sisters to school, games, lessons, or special event. These trips offer a good opportunity for grandchildren to bring up things that are bothering them. Sometimes saying something like, “How are things going with the new baby or brother or sister?” will open the flood gates. In the many sibling groups I have held, it has been amazing to hear some of the children’s complaints. The two most common were that they were getting little attention from their parents and their siblings were never asked to do anything, even when they could.
Many of the kids had a feeling of guilt about being healthy, when their brother or sister was not. If the siblings know a grandparent or grandparents are always ready with a hug, something good to eat, are available to listen, or just to provide a safe place where they can get one-to–one attention, this can make all the difference in the world. Many siblings of a child with a disability will either act out to get attention or be very, very good. A large majority of siblings go into the healthcare professions as adults, which many professionals believe to be a way of paying for their own good health.
There are children with special needs who make manipulation a fine art. Often when a problem or accident happens, a way is found to make it appear that the healthy sibling is the offender. This can be a hard burden for a brother or sister to bear, particularly if it happens repeatedly. If grandparents see this occurring, they may want to bring it up with the parents. This can be a very delicate subject and one that should be approached with a great deal of tact and in the proper setting. If the parents deny this is occurring, there is nothing grandparents can do unless they have full custody of the grandchildren. Then some family therapy or individual counseling might be in order.
A grandparent who lives at a distance can still make a difference with frequent telephone calls, cards, letters, and small gifts. If a trip to visit can be arranged that would be an even bigger treat. Taking one grandchild at a time on a trip can be a memorable experience for both the grandchild and the grandparents. Planning the trip together and giving an older child a budget for the trip can help the grandchild learn about money management. A trip doesn’t have to be expensive, because even a one or two day trip can be fun and not too tiring.
The greatest gifts grandparents can give to the brothers and sisters of a child with special needs is to let them know how much they are loved, spend time and have fun with them, and listen to their joys and sorrows.
In this extract from The Complete Guide to Getting a Job for People with Asperger’s Syndrome, career development coach and author Barbara Bissonnette translates some common interview questions to help literal thinkers understand what is actually being asked of them.
To answer a question well, you must understand what is being asked. This may not be readily apparent if you are a literal thinker. Josh was completely confused when he was asked, “Why should I hire you instead of the other candidates?” After thinking about it for a few seconds, he said, “I don’t know how to answer that, because I haven’t met the other candidates.” The interviewer knew that Josh had not met the other applicants. The intent of his question was for Josh to summarize why he believed that he was the best person for the job.
There are several types of interview questions. Some assess your abilities, depth of experience, and knowledge of a job function or an industry. Others are designed to tease out how well you work with others. Behavioral questions look at past actions as indicators of future performance. They typically begin with a statement like, “tell me about a time when,” or, “give me an example of,” or, “describe a project that…”
Here are some common interview questions, and suggestions about how to answer them. Even if you are not asked all of these questions specifically, you can use the information to respond to similar inquiries about your background, hard skills and soft skills.
1. Tell Me About Yourself
Translation: Summarize your relevant skills and experience.
This question is often asked early in an interview. It is not an invitation to share your life story. A good answer summarizes, in five to six sentences, the skills and experience that make you a good fit for the job. Mention your most relevant general and job-specific skills, as well as personal characteristics that are important for the position. An accountant could summarize experience in basic accounting principles, discuss proficiency with computer spreadsheets, and give examples of accuracy and attention to detail.
A bit of humor, if you are comfortable using it, can relieve nervousness and get the interview off to a good start. Accountant Todd could say, “I’m a numbers geek!” But don’t overdo the levity. One or two bits of humor per interview is enough. You want to project friendliness, not goofiness. You are not interviewing to be a company comedian.
Avoid long, rambling responses that contain irrelevant details: where you grew up, a list of classes you took to earn your degree, or your recent divorce. Don’t mention achievements from high school and earlier, unless they are truly significant. Earning the designation of Eagle Scout, for example, requires personal characteristics that include persistence, leadership, and teamwork. These are valuable in any job.
2. Why Did You Choose This Field?
Translation: What excites you about this work or this industry?
A strong response highlights aptitudes and abilities that are related to the job in question. For example, “Engineering appeals to me because I enjoy applying mathematical principles to solve real-world problems. During college, I did a project…”
A weak response focuses on your personal preferences instead of what you can do for the employer, “I like computers,” “There are lots of jobs,” or, “It pays well.”
3. What Are Your Greatest Strengths?
Translation: What makes you good at this work? (Be ready with three examples.)
It is not boastful to discuss your abilities and accomplishments at a job interview. This is your chance to describe knowledge and personal attributes that enable you to achieve results for the organization. Choose strong points that demonstrate your ability to perform the job well. An engineer might say, “I can form detailed pictures in my mind and see how design changes will impact product performance.”
Empty, self-serving answers are those that offer no benefit to the employer, “I’m a fantastic writer,” “I’m a genius at math,” or, “I live to write code!”
4. What is Your Greatest Weakness?
Translation: Do you have insight into your limitations and have you learned from your mistakes?
This is a tricky question. Everyone has weaknesses of some kind, so saying that you don’t have any is clearly not true. On the other hand, being too honest can disqualify you as a candidate. Think about a weakness that is also a strength, or a limitation that you have overcome. Aaron said, “I can be a perfectionist, however this has helped me in accounting because my work is accurate. And, it is always delivered on time.” This answer works because accuracy is important in this line of work, and Aaron added a sentence to let the employer know that his thoroughness would not get in the way of meeting deadlines.
Unacceptable responses are those that communicate a fatal flaw. This refers to an attribute that makes you unqualified for the position. Describing yourself as introverted and a little shy at first would be a fatal flaw for a salesperson, who meets with new prospects. It would not be a fatal flaw for someone, like an accountant, who works mostly with information. Some answers are fatal flaws for any job. Fatal flaw answers include, “I’m not a team player,” “My selfconfidence is low,” and, “I don’t like taking the ideas or direction of others.”
5. Describe Your Worst Boss
Translation: What type of manager have you disliked working with (and am I that type of manager)?
This question is not as simple as it may first sound. I’ll begin with the wrong answer, since it is the one so many of my clients choose. Rob is a good example. I could hear his agitation as he began describing a former manager. “He wouldn’t give me clear instructions, and then blamed me for everything that went wrong,” Rob began. “Once I asked to take a Friday off before a holiday weekend. He was so mean, he said no, but then let one of the other associates take Friday off.”
I’ll bet that you, like Rob, have a story or two about an unreasonable, jerky boss. However, sharing these anecdotes at an interview makes you look bad. Blaming problems on someone else, or making negative judgments about a person’s character, makes you sound like a complainer, and an employee who is difficult to work with. Companies do not want employees who are difficult. Avoid comments like, “He didn’t listen to me,” “She criticized my work,” and, “He was disrespectful and yelled a lot.”
When a hiring manager asks this question, he wants to know whether you will be comfortable with his management style. A manager who gives staff members a lot of autonomy would be concerned if you describe this style as difficult. Obviously, you cannot know a manager’s preferences in advance. If your styles are different to the point of incompatibility, it really means the job is not the right fit, and it’s unlikely that you’re going to get hired.
The right response to this question focuses on professional (not personal) characteristics, and frames negatives as differences in preference or style. For example, “My last supervisor preferred group brainstorming sessions. This was a challenge sometimes because I like to think about a problem on my own, then present my ideas to the group. We worked it out so I could contribute my ideas the next day.”
For more essential advice, tips and strategies for getting a job in the neurotypical workplace, buy your copy of The Complete Guide to Getting a Job for People with Asperger’s Syndrome by Barbara Bissonnette.
Copyright © Jessica Kingsley Publishers 2012.
Most parents and grandparents sigh with relief once summer is over and children are safely back in school. I know I certainly let out a big sigh. Now that another summer is here, one of the biggest worries is keeping our children and grandchildren safe. This is an extra responsibility for grandparents if they have the care of a grandchild even for a few hours or a day. If you have your grandchildren for longer periods, then you have to be even more vigilant and keeping up with an active child is harder as we get older.
Kids with and without disabilities account for about 40% of summer visits to the emergency rooms from May to August in the U.S., and I am sure the statistics are similar in other countries. Remember, however, that many ERs are not equipped to care for children and many ER doctors have little or no pediatric training. Thus, all grandparents should know how to do CPR and the Heimlich maneuver which would be used if a grandchild is choking and unable to cough up food or a foreign body. If a grandchild has a convulsion or seizure, 911 in the U.S, or the local emergency number should be called. Any sharp objects should be moved and the grandchild’s airway checked to be sure no food or a foreign object is obstructing it.
Ingesting poisons is always a concern and when kids are hungry or thirsty they will eat or drink almost anything. One patient of mine saw an open Coke bottle in a neighbor’s yard and took a drink. His feeding tube or esophagus had to be replaced. Thus it is important to have the number of the poison hotline posted near your telephone. For the UK, the number is 0845-4547. In the U.S., it is 1-800-22-1222.
Another recent cause of concern is that kids are swallowing small magnets found in many toys and other objects. These magnets can pierce the esophagus and result in death, unless prompt and aggressive treatment is received.
If an autistic child runs away, they can get into all kinds of trouble or accidents. Letting your local police know that your grandchild has a tendency to slip away before it happens can put them on alert if you need help in locating the child. If you are near the ocean, swimming pools, or a lake, drowning is of particular concern. All children should be taught water safety, particularly if they tend to run away. Even house bath water can be a problem. If the water is too hot, a child with impaired sensation in the lower extremities can be badly burned, so the house water heater should be turned down below 120 degrees Fahrenheit. No small child or a child with a disability should be left alone in a bathtub, wading or swimming pool. If the telephone or doorbell rings either take the child with you or just ignore the rings.
Summer picnics are lots of fun, but grandchildren must be watched to be sure they don’t get near an outdoor grill or another source of fire. Burns can be particularly severe if a child has impaired sensation. Having a first-aid kit in your car and house is a must. Playground equipment in the yard or in a park can be a problem if there are ropes or swings where a child can fall or become entangled. Window coverings can present a problem if there is any way a child can become entangled in a cord.
Household appliances, such as dryers, stoves, microwave ovens, irons and even toy chests with heavy lids can be a problem if a child decides to open one and climb in. Keeping your eyes on grandchildren can be hard particularly if they are hyperactive. Kids love to investigate and open sockets can also be a temptation. These can be covered with safety caps available online, in baby or hardware stores.
Medications should be under lock and key or up high and grandmothers’ purses can present a potential problem if medications are inside. Firearms, too, must be locked up. Garages usually contain all kinds of fascinating and potentially dangerous things and should be off-limits to a grandchild unless a grandparent is in charge and watching carefully. Kitchens usually have many dangerous things under the sink and these should be put up high. Open windows and open doors, particularly leading to a balcony should be closed and locked.
The list goes on and on…so my best advice is to walk around your house and yard before a grandchild visits and do this periodically to think about what could harm a grandchild. Grandchildren can also be taught about potential dangers and to warn you if there is a cause for alarm. When my son was about three he was playing with some neighborhood children in our back yard. The kids seemed to be happy and I could see and hear them through the back windows. Suddenly, Geoffrey ran in saying “Mommy, the children are going to need their stomachs pumped out!” I ran to the back yard and found a neighborhood child beginning to pass out medicine bottles from a big black purse. The boy had apparently filled an empty purse from a medicine cabinet and was playing doctor! How luck I was that Geoffrey had heard my many accounts of visits to the ER to care for children who had ingested medicines or poisons.
Copyright © Jessica Kingsley Publishers 2012.
Grandparents who have full or part-time care of a grandchild with spina bifida, cerebral palsy, or a neuromuscular disorder often have questions about what orthopedic care is needed and if appropriate orthopedic care is being received. Unfortunately, many orthopedic training programs place little emphasis on neuromuscular disorders, spina bifida, or cerebral palsy. Nevertheless, a knowledgeable pediatric orthopedist and a physical therapist are two of the most important members of a team caring for kids with these disabilities.
There are several ways that children with cerebral palsy can be helped. One is by injections of botox into spastic muscles, but this must be done by an orthopedist with wide experience in the technique. If a child has a spastic diplegia, where just the legs are involved, he or she may improve greatly with a surgery called a rhizotomy. This may be performed by a neurosurgeon and not an orthopedist. After the surgery, a pediatric physical therapist plays a most important role.
Back surgery for curvature of the spine or scoliosis may or may not help a cerebral palsy patient. The problem is that if the spasticity is severe the scoliosis may reoccur. Thus the pros and cons of surgery in these cases should be weighted carefully and often a second opinion is needed.
Arthrogryposis is a condition where one or more joints may be fixed. Surgery or serial casting can often be helpful, but this should only be done by a pediatric orthopedist with extensive experience in this disorder. Otherwise the treatment may be very painful and ineffective.
Neuromuscular disorders often present real challenges to orthopedists. Curvature of the spine in spinal muscular atrophy, muscular dystrophy, and some of the other conditions with muscle weakness can change a child’s life for better or worse. One of the principal problems is that many orthopedists do not understand that these patients must be mobilized as quickly as possible. They must never lie in bed for several days after surgery, but should be sitting up and receiving physical therapy as soon as possible. One of the most tragic cases I have seen was an orthopedist who technically was very good, but he kept a child in bed for several months and this changed her life forever. She became weaker and weaker and developed severe emotional problems. Some orthopedists insist on back braces for several months after the back surgery, but often this is not necessary.
Another problem with spinal muscular atrophy and some of the other neuromuscular problems is that because of weakness around the hip joint, the hip often comes out of the socket or is dislocated. Even when a child is not walking, orthopedists usually want to surgically put a hip back in place. I have seen cases where the hip dislocated one or more times after being surgically replaced. No surgery should be done unless there is severe pain and that usually does not occur.
Boys with Duchenne muscular dystrophy (DMD) begin to start walking on their toes as their muscle weakness advances and their heel cords become tight. Surgery of the heel cord, called percutaneous surgery, is a specific way the heel cord tendon is cut. This procedure allows the boys to walk much longer. A short-leg brace or Ankle-Foot Orthosis (AFO) (caliper) may be needed after the surgery. With this type of surgery, physical therapy is mandatory the day following the operation. The boys must get out of bed and start walking quickly because if they are allowed to say in bed or use a wheel chair, they may never walk again. One orthopedist operated on a boy without my knowledge on a Friday afternoon. Fortunately, the mother and grandmother knew I had insisted that physical therapy should be started immediately. The child’s school physical therapist was a friend and made house calls over the weekend, so the boy would not stay in bed. He was able walk for several more years because of this. Thus, parents and grandparents must be very aggressive in order to be sure that appropriate orthopedic surgery is being done and physical therapy received, as needed.
Charcot-Marie-Tooth is quite a common disorder which affects the muscle of the feet, ankles and legs, and one of the worst problems for both kids and adults is to find shoes that fit. Patients may have quite high arches and other foot deformities, so specially made shoes may be necessary. In addition, braces or AFOs (calipers) may make a great difference, so a pediatric orthopedist should be seen periodically. Surgery on the ankles and muscles in the legs may be necessary to make a child’s walking much easier. Curvature of the spine or scoliosis can occur and should be checked for periodically. With good orthopedic care, kids should be able to ambulate for a long time, unless there is a rapid progression of muscle weakness.
Children with spina bifida often need back and other orthopedic surgeries. Ideally, these are done by an orthopedist who is connected with a spina bifida clinic and has treated many children. Braces or AFOs (calipers) are extremely important and back braces may be necessary. A good orthotist or brace maker plays a very important role in the lives of these children, as with many children who have both neuromuscular disorders and cerebral palsy. A poorly fitting brace can be painful and ineffective.
One of the important roles grandparents can play is to do a lot of research in order to find the best orthopedic care for a grandchild, if this is needed. Checking an orthopedist’s credentials is essential and in general I would never let an orthopedist who sees mostly adult patients have any involvement with these special kids. In the U.S., I refer to one pediatric orthopedist whose book is the only one published on neuromuscular disorders and I always call him when I have questions. Another orthopedist has a son with cerebral palsy and is an expert on botox treatment. I know some of the special clinics in England have orthopedists as part of their team, so the children in these clinics are very fortunate. E-mail me at firstname.lastname@example.org for more information.
Copyright © Jessica Kingsley Publishers 2012.
Dr. Michael P. McManmon is the founder of the College Internship Program (CIP) that serves college-aged students with learning differences and Asperger’s Syndrome in six centers across the U.S. CIP’s goal is to prepare young men and young women with skills for life, for work and for independent living. Dr. McManmon was diagnosed with Asperger’s Syndrome at fifty-one years of age. His personal struggles and ensuing victories and that of his students and staff have inspired this book. He lives in Massachusetts in the U.S.
What led you to found the College Internship Program (CIP), and how does it work?
I had worked for private and public group homes for younger and older children for about ten years and when I moved to Massachusetts, during the era of deinstitutionalization, I wanted to open a transitional apartment program for students coming out of residential schools and institutional programs. I read Wolfensburger’s Normalization Theory while studying for my Doctorate in Special Education and wanted to implement it in a community-based program where students could experience living in normal living conditions.
The College Internship Program opened in 1984 and is a community-based program with six sites around the U.S. We offer a comprehensive curriculum for students with Learning Differences and on the Spectrum. Students live in apartments and can attend college or be involved in career studies. They learn everything from banking and budgeting to apartment skills and executive functioning skills. They have instruction in social thinking, sensory diets, wellness, etc. both in individual sessions and modules at our centers.
Why do you think it has been so successful?
The program is individualized and encompasses all the main areas that students with learning differences would need to work on. We can create an individual program of services for each student and then move them to less intensive supports as they progress. Students are assessed and given the exact services that they need to succeed.
Can you talk a little bit about your personal connection to Aspergers Syndrome?
Initially, I was diagnosed in 2004 by our Academic Coordinator (who worked for me at our center in Massachusetts). This was after operating the center for more than fifteen years. It was near the time that we first had contact with Stephen Shore and invited him out for a day to share information. It also coincided with a visit we made to see Ami Klin who was at the Yale Child Study Center. Ami referred to us as one of the foremost College Programs for Aspergers and we left there quite mystified, as we knew only a little about Aspergers Syndrome at the time. After meeting with both Stephen and Ami and my staff diagnosing me, I became fascinated with reading about Aspergers and started to formulate a comprehensive curriculum for our program.
How did your diagnosis affect your life?
My diagnosis was a huge shift psychologically for me. I realized that the goofiest parts of my personality that I was trying through my life to hide were actually my best traits. I started to be myself and to learn about how to respond socially to others, use eye contact, work as part of a team, etc. My self-esteem rose as I learned to initiate, be reciprocal and succeed at working at my goals. I was workable with others and in community. My adult children had a Dad who was a human being and not just a Human Doer. Before diagnosis, I struggled to be able to operate one small center – after diagnosis, I am able to navigate the world, have six centers, and can maintain relationships.
I feel like a child let loose in a candy store. It seems to me that I can operate like a normal adult in any area I choose to participate. I know how to ask for help, to form alliances, and I am open to change and experiencing new things in my life. I would say I am very happy.
Can you tell us a bit about your book, Made for Good Purpose – what was your goal in writing it?
The goal in writing the book was to explain from the inside out the critical variables for parents and professionals to understand in dealing with young people on the spectrum. I have been told that I serve as some kind of “emotional translator” of sorts and it is almost like I have lived a double life and am able to interpret for them the important approaches to working with their sons and daughters.
The book was a labor of love and it illustrates through stories the relevant steps that need to be taken. The overriding message is that cognitive flexibility is the hallmark of a productive, happy and healthy young adult. All other growth is predicated upon being open to change and feedback and understanding who you are and accepting it.
Your book contains beautiful illustrations. When did you first start drawing, and how do you find time to do this?
I started drawing as a young child and was punished for it in second grade but persisted in it. In college, I wanted to transfer to art school after taking every art course I could at my college, but my father was not supportive. I buried my art when raising six children. After diagnosis my art became reinitiated and it transformed when I allowed myself to use color for the first time about five years ago.
I draw and paint everywhere I go and I am always completing several pictures at one time. I just force myself to whip out the watercolors and pad wherever I travel.
You also write beautiful poetry – when did you start?
I started writing in the seminary in High School and I still have my writings from that time. In college, I wrote many poems and they were published in our literary magazine. I wrote a lot on my job all night in a hospital during the summer and also when I lived in the slums of Washington D.C. after college. My poetry writing came mostly to a halt when raising my children and started to reshow itself in the last five years also.
What is your next big challenge?
My next big challenge is to start Visual and Performing Arts Centers and programs at each of our six centers around the U.S. I have created one at our center in Massachusetts where we have an art gallery (Good Purpose Art Gallery) and a theatre in an old church that we have renovated called the Spectrum Playhouse. These venues provide outlets for our students for their talents and integration with the surrounding artistic community. This is not a challenge but another work of love. My passions are all about this and I feel much joy and satisfaction from continuing to work on these projects.
Another project I have started is another book entitled The Assets of Aspergers. This book is a totally positive look at the wonderful traits of those on the spectrum and how they make life better for all of us.
Copyright © Jessica Kingsley Publishers 2012.