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Grandmothers Raising Aspergers Grandchildren

More than 3.9 million grandmothers are raising their grandkids in their homes. Overall, about 5.4 million kids nationwide live with their grandmothers. In fact, one in 10 grandmothers has been the primary support of a grandkid at some time in their lives. While this is not a new phenomenon in this country, the rate of grandmothers raising their grandkids is increasing, and there is every reason to believe the numbers will continue to grow.

Kids with Aspergers (high-functioning autism) have a special need in their lives for ‘safe’ people who won’t criticize them or put them down for their differences. They need loving, non-judgmental grandmothers who accept them as they are and make a place for them in their lives. If you can reach out to them, they will treasure your relationship with them for the rest of their lives.

Many grandmothers in this care taking role underestimate or are unaware of the added burdens their new role as "mothers" will place upon them. Grandmothers often assume their role will be to nurture and reward kids without having to set limits. When grandmothers serve as mothers, however, they must learn to set limits and establish controls as they did with their own kids.

Grandparents raising Aspergers grandchildren should provide the following:
  • advocacy that builds a support system around the kids in their family, neighborhood, and community
  • affection and compassion freely given
  • guidance modeled by the grandparents’ behaviors
  • establishing and maintaining reasonable limits, direction, and activities to meet their needs
  • motivation that models and stimulates curiosity and imagination in learning about the world
  • nurturing with kindness and attentive listening to feeling and ideas
  • understanding that takes into consideration how the grand kids view, influence, and respond to the world around them

In the best of circumstances, kids who are being raised by their grandmothers are going to experience loss and abandonment as well as other issues relating to their place in the family. This is not what they expected out of life.

Nobody knows what causes Aspergers, though most scientists acknowledge a genetic factor. So the deficits your grandkid has can only be understood, minimized and worked around. They will require accommodating on everyone’s part. But in time, with proper programming, the kid’s behavior and understanding of the world should improve.

Often, grandmothers take on the parenting role when the grandkid's own mothers abandon them or when the kids can no longer live with them because of the parent's mental disorder, substance abuse, or incarceration. Thus, you may have the added burden of caring for kids who suffered from abuse or neglect from their own mothers. These kids may feel insecure and afraid; they may be angry at their situation and even embarrassed by it. It will take time for these kids to feel safe and secure. You can encourage these good feelings and ease their adjustment to their new home in a number of ways:
  • Help your grandkids to feel that they are "home" by making room for them and their belongings. Your home needs to be welcoming, safe, and kid-friendly.
  • Practice positive discipline that emphasizes education, not punishment, and that rewards good behavior with praise.
  • Set up a daily routine of mealtimes, bedtime, and other activities so that the kids have some predictability in their lives.
  • Set up a few rules, and explain the rules to the kids. Then, enforce them consistently.
  • Work on communication skills. Talk to your grandkids, and make sure that the kids know that they can always talk to you.

The deficits that comprise Aspergers are not always readily apparent, especially in milder cases. The kid is usually of average intelligence or higher, yet lacks what are essentially instincts for other kids. If your grandkid seems “perfectly normal” despite the diagnosis you’ve been told about, then he is probably working very hard to make sure he fits in - and it’s not as easy as it looks. It is best to treat your grandkid for what he is - normal. But be prepared to take some advice from those closest to him regarding what is the best way to handle certain situations.

Building new relationships can be difficult. Sometimes, it helps to find things that you can do with your grandkids to nurture your relationship and to make them feel secure and happy in their new home:
  • There are many local support groups for grandmothers raising grandkids, and a number of these groups also provide activities for the kids. You might also find welcoming groups at your place of worship or in the local schools or library.
  • If you don't have your own computer, use the one at the public library. The library may have classes or other free help for you. You'll find lots of things that you and your grandkids can do on the computer, from games to school research.
  • Kids of all ages need to be active. Physical activity may help your grandkids feel better and develop a healthy lifestyle, and it can be an important stress reliever for you.
  • Kids love to hear stories, and even older kids may surprise you by sitting quietly as you read aloud. Kids who see you read have a better chance of becoming readers themselves.

Look for ways to be supportive. Let them know that there is another heart tugging at the load - and it’s yours. Keep on the lookout for articles about Aspergers and send them copies. This shows that you are interested. Ask lots of questions about the special programs the kid is in. Be enthusiastic and optimistic. Let them know you think they’re doing a great job. At other times, you can be a sympathetic sounding board when they have difficult decisions to make, or when they just need to tell someone what an awful day they’ve had.

If you're feeling stressed, overwhelmed, and unhappy, you are not going to be able to provide the best care for your grandkids. It's important that you take care of yourself and not allow yourself to be overwhelmed by your parental responsibilities. Here are some suggestions:
  • Talk to someone. This could be a friend or relative or a professional, such as a counselor, family doctor, or someone at your church or temple. Unburdening yourself can be a stress reliever.
  • Take a parenting class. A class may help you to feel more comfortable with your status as a caregiver for young kids. It will also provide resources in the form of your teacher and the other students in the class.
  • Take a break. A short time away from your grandkids may give you some time to relax. Look for a trusted adult who can babysit or take over while you're out.
  • Learn to say "no." You don't have time to do everything. Learn to make priorities, and eliminate the unnecessary tasks in your life.
  • Find a support group—either a group specifically for grandmothers raising grandkids or some other support group where you can share your challenges with others who will understand.

Your grandkid needs to know that you are a safe haven in a bewildering world. It may seem a lot to ask to be flexible with a kid who appears to be misbehaving, but inflexibility will only put distance between you and the kid. If the kid’s manners and mannerisms drive you crazy, ask others for suggestions on how to set expectations for your house.

It might be helpful to think of yourself as a seeing-eye dog. Remember, your Aspergers grandchild is “blind” in certain ways. Point out trouble-spots and guide him around them, explain social situations that he can’t “see,” and narrate what you are doing as you do it. By doing so, you’ll help him to feel more secure with you, and you’ll be actively participating in his special programming.

Watch the emotional levels. Asperger kids often have great difficulty sorting out emotions. If you get angry, the kid could lose control because she is unable to deal with your anger and her own confusion at the same time. Reign in your temper when the kid is clumsy, stubborn, or frustrated. In situations where you feel you really need to be firm, keep your tone calm, your movements slow and even, and tell the kid what you’re going to do before you do it. Get advice from others on how to deal with little meltdowns so that you are prepared in advance, but do your best to avoid triggering them.

Here are some simple DO’s to remember:
  • Do acknowledge the kid’s expressions of frustration.
  • Do control your anger.
  • Do get involved in the kid’s interests.
  • Do learn what sorts of activities are recommended for the kid.
  • Do praise the kid for his strengths.
  • Do respect the kid’s fears, even if they seem senseless.

Here are some simple DON’T’s to remember:
  • Don’t compare him with his siblings.
  • Don’t feel helpless - ask for help.
  • Don’t joke, tease, shame, threaten, or demean the kid.
  • Don’t talk to him as if he were stupid.
  • Don’t tell the kid he will outgrow his difficulties.

There is lots of useful free information for grandmothers. Much of it is available on the Internet. If your computer skills are a little rusty, you can find help at your public library.

The Aspergers Comprehensive Handbook

Aspergers Teens and College

Your intelligent Aspergers (high functioning autistic) child has made it to his junior year in high school, and it's time to consider colleges! The good news is that more and more colleges are meeting the special needs of Aspergers teens to help them succeed.

Here are some important suggestions for teens with Aspergers (and their moms and dads) as they think about applying for, managing, and thriving in college:

1. Consider broadening your search if your youngster has additional disabilities such as ADHD, which often co-exists with Aspergers. Academic programs for kids with organizational disabilities may also offer social help for Aspergers people.

2. Consider taking a few classes online. Young people with Aspergers may be overwhelmed by the harsh lighting and noise from a classroom. You may want to check and see if a couple of your required classes may be taken online. However, be advised that taking classes online actually requires more self-discipline than in a traditional classroom.

3. Do your best! Speaking as an instructor who also has Aspergers, I am sensitive to young people who have special needs. However, this also means I expect people to attend class unless they have medical documentation.

4. Establish a medical care provider near your campus. This is extremely important because as a person with Aspergers, you have special medical conditions that many college students will not share. Do some research online or ask your hometown physician for a referral.

5. Have the number of a personal counselor nearby. You may have your good days and bad. Some issues can be especially daunting for a college student with Aspergers. There’s no shame in speaking with a counselor on campus that can help you work through those issues.

6. If you are planning on living in a dorm, you may want to let the administration know about your Aspergers or request a private room. If you are someone who is extremely sensitive to external stimuli (e.g., light, sound, etc), you may want to be placed in a “study floor” instead of a “sorority wing.” Or, if possible, you may want to request a private room so that you have a little more control over your environment.

7. Join an activity to meet people with similar interests to your own. Socializing is not something that always comes easily to people with Aspergers. Think of those activities you enjoy or in which you have succeeded. There are bound to be groups or clubs focusing on that activity.

8. Let your teachers know of your Aspergers and what may be helpful to you. If possible, arrange a meeting with your teachers before the beginning of the semester, but no later than the first week. They will probably respect your honesty and the initiative you are taking in your courses. Also, don’t hesitate to ask for help. As an instructor, I am always willing to help someone who asks for it.

9. Obtain certification of your Aspergers from your medical professional. In order to obtain accommodations on a college campus (such as disability support services), you will probably be required to have documentation of your Aspergers from a physician, neurologist, or psychiatrist.

10. Research universities. Talk with high school counselors and other moms and dads; search online for schools offering support to Aspergers people. Some schools designate certain dorm floors for young people with social difficulties and facilitate interactive activities to ensure they connect with others right from the beginning.

11. Seek career counseling as soon as possible. Finding a job after graduation is particularly challenging for young people with Aspergers. Unfortunately, society tends to focus on the limitations that come with the word “autism” rather than the strengths. So you may want to write down some activities you really enjoy doing or perform particularly well. This can be very helpful for a career counselor who will work to provide you with some direction in terms of courses, volunteer, and internship opportunities.

12. Streamline the process by honing in on schools that offer majors in your youngster's areas of interest and then contact the departments of disability accommodations in each of those schools to see what they offer.

13. Understand that your youngster can have a successful college experience. More than likely she is doing OK or even brilliantly at academics and will just need extra help with social and life skills.

14. Utilize your advisor. Take an active approach with your advisor. It can’t hurt to mention your Aspergers so you can work with your advisor to find a career that is compatible with your strengths. Share the results of any career testing with your advisor, so that you may receive more guidance.

15. Visit several colleges. Most Aspergers kids are very concrete thinkers and cannot just "imagine" what a school will be like from descriptions and photos.

16. When applying for college or a program, it is a good idea to indicate your disability. Of course, you are not required to do so. However, state institutions are not permitted to discriminate against someone due to a disability.

17. Without delay, locate the disability support services on campus. This is very important, as they will likely be the professionals who will arrange (or provide verification) for you to receive necessary accommodations to perform well in your courses.

18. Write down your strengths as well as your limitations. As I mentioned, society tends to focus on the limitations of Aspergers rather than the strengths. You need to advocate for yourself by writing down what you do well and those tasks in which you have succeeded.

Congratulate yourself for having the ambition to attend college and not letting yourself be limited by Aspergers! You’ve made it this far – what else will you do!"

Dealing with Fixations in Aspergers Children

Hello Mr. Hutten: I am a Master of Social Work student at the University of Windsor in Canada. I am currently doing a clinical placement at a children’s mental health organization. I am very interested in Asperger’s and would like to move forward with a research proposal for my MSW thesis. More specifically, I am interested in examining whether (through treatment) it is possible to assist adolescents in shifting their fixation/obsession with a specific object. The reason I am interested in this is because we are currently working with an adolescent who has a fixation with cars and this fixation is potentially harmful to him and others due to the fact that he has already been in contact with the law from this fixation. If it is possible to shift a fixation through treatment, my colleagues and I would like to know what treatment approaches are successful. Would you be able to answer this question or point me in the right direction (i.e. specific studies surrounding evidence based treatment)?

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Your school library should have several psychiatric journals that have researched Aspergers fixations and how to address them. I’m not aware of any evidenced-based treatment programs that address fixations specifically.

Fixations (or perseverations) with certain topics or objects (e.g., books, video games, trains, history, movies, etc.) are a classic symptom of Aspergers. In addition to impairments in social functioning, the DSM lists as a characteristic of the disorder restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
  • apparently inflexible adherence to specific, nonfunctional routines or rituals
  • encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
  • persistent preoccupation with parts of objects
  • stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

While these fixations must be understood and accepted as part of the disorder, they are also coping mechanisms that young people with Aspergers use to escape social anxiety.

For example, video games are becoming an increasingly common interest among young people with Aspergers. Although the virtual world of games can be a great place for young people to practice social skills, make friends, and have fun, the interest in video games can quickly become an unhealthy and even dangerous obsession.

For young people who get picked on all day at school or feel ostracized and out of place in their everyday lives, it's soothing to come home and play video games for hours. In the safe haven of online gaming, young people with Aspergers can isolate themselves from real-life people and the complexities of face-to-face interactions.

However, the social setting in online gaming or chat rooms is unrealistic and far more predictable than real-life social situations. While social conversations in real life are highly complex and unpredictable, online gamers share a common and simple language for communicating.

Since most online interaction occurs through typing, there is time to think about a response, and the response can be given in symbols and phrases without regard for facial expressions or nonverbal cues. In addition, curse words, rude remarks, and hurtful jokes may be considered socially acceptable online, but they will not be welcome responses in the real world. This disjunction between socially acceptable interactions in the virtual world and the real world can be terribly confusing to young people with Aspergers who already struggle to understand basic social conventions.

Moms and dads of a youngster with Aspergers are thus faced with a dilemma: Do we limit our youngster's time spent doing the activities that interest him most and run the risk that he will withdraw even more, or do we allow him ongoing, easy access to things like video games and science fiction/fantasy books and movies despite the obvious social repercussions?

It’s important for mothers and fathers to find the balance between accepting their youngster's unique interests, and encouraging him to develop social skills and additional interests that might take him outside of his comfort zone. By granting unlimited access to video games and other fixations, parents offer their young ones nothing more than a quick fix. The perseveration may be a convenient coping skill for facing the hardship of a long, difficult day at school but it will not be the healthiest path into adulthood.

Young people with Aspergers need to be challenged to explore other interests and find healthier coping skills. It's easy to use video games and other antisocial outlets to cope, but easier isn't usually better.

If Aspergers children aren't encouraged and helped to develop social skills and independent living skills, there will be a direct impact on how many friends they have, and how successful they are in school and on the job later in life. They may be soothed in the short term, but that deep underlying desire to make friends or have a boyfriend or girlfriend will remain a source of constant dissatisfaction and further isolation.

Addressing fixations is difficult for the parent. On one hand, video games and other interests encourage more social interaction than young people with Aspergers would ordinarily have, but on the other hand, it's not the kind of social interaction that prepares them for life.

Parents should encourage their youngster to develop interpersonal skills off of the computer, and set limits around how often their youngster with Aspergers uses or talks about their fixations. Mothers/fathers should also offer incentives to their youngster to balance his time spent focused on the fixation and time spent doing social activities. For example, if a youngster is passionate about video games, a parent could agree to allow the youngster a certain amount of time to play each week in exchange for the youngster's participation in an after-school activity.

When young people with Aspergers have “structure” around when they can engage in their particular interest, they are more willing to accept rules limiting its use. In our facility, the Aspergers child is allowed to read his favorite book at designated times, but he is not permitted to bring the book to meals. This way, the child learns that his interest is perfectly acceptable when explored in socially appropriate ways, places, and times.

The fixations of young children with Aspergers fulfill a need in their lives that will likely never disappear completely. However, their usefulness in real life is extremely limited. Everyone needs an occasional break from the rigors of daily life, but Aspergers children depend on their mothers and fathers to set limits around these fixations and offer guidance in navigating the complex social world around them. By making a plan and following through with it, you accept your Aspergers child for the unique being he is while giving him the tools he needs to live up to his full potential.

Many of the advances in history have been made by people who are obsessed with one topic – learning more about it, experimenting with it, sharing their knowledge, etc. Great discoveries can come out of this obsessive focus.

In an ideal world, there would be a way to turn an obsession into a productive job. With some obsessions such as counting ceiling tiles, you might have to be a bit more creative …but if an Aspergers child is consumed by his interest in cars, he may be able to combine his interest with a useful profession.

Sometimes the obsession is so all-encompassing that it's hard to get the youngster to pay attention to anything else. This means that he'll be missing some of the learning time he needs to develop his other skills.

In my experience, it's very difficult, almost impossible to remove a kid's obsession. If you absolutely forbid access to the obsession, the upset might be huge and last for a long time and the child might cling even more tenaciously to what he wants.

Rather, you may have better luck in limiting his access to his current fixation. You could employ the "First.....then....." strategy. First, he must complete this task, then he gets so many minutes of ______ time …or you could ration his time by clocks or timers. Every half hour, he gets five minutes of _____. You'd have to adjust the times to whatever is reasonable for your Aspergers youngster. You could gradually increase the time intervals or the amount of work he must accomplish before he gets time for the activity of his choice.

Rather than attempting to remove his access to it totally, you could try to find a substitute. Just plain removing an obsession may not work, but finding a substitute may.

The substitute would need to fill some of the same purpose that the Aspergers child finds in his obsession. This takes some detective work on the parent’s part. Does he like the sound? Is the appeal visual? Feels? Smells?

Once you figure out what the appeal may be, then you can start to find appropriate substitutes. A word of caution though; whatever you substitute could then become the child’s obsession. So, make sure the substitute is socially acceptable, age appropriate and something that could endure for several years.

If you have access to an Occupational Therapist (OT), they're great at helping determine the possible sensory appeal some obsessions may have for your client and in coming up with acceptable substitutes. If there is no OT available, you can play detective yourself.

Sometimes, an Aspergers child will cling more tenaciously to his obsession when he's upset or unsure. The more calm and sure he is of his routine, the more he may feel he can let the obsession go or at least spend less time on it.

Children with Aspergers love routine. When you have trouble making sense of your world, it's hard to predict what may come next, how it might affect you and what other people will expect of you. That's why routines and schedules are so important. A visual schedule lets the youngster know what will happen next in his day. And a visual schedule, whether in words or in pictures is better than just telling the kid. Besides, teaching him to rely on a schedule rather than on an adult telling him what to do helps in his independence.



Comment:

I would really like to know some ideas for computer/video game substitutes. My son particularly relies on these "fixations" during out-of-the-ordinary social times and we often let him play the games so that we're not all miserable. What else can we do?

Response:

Video games may seem like the dominant form of entertainment for kids nowadays, but it has proven to have its share of consequences, too. For example:

• growing waistlines
• lack of real social contact (cell phones, texting, and emails do not count here)
• shortened attention spans

But moms and dads have it in their power to show their kids there are in fact better ways than spending 5 plus hours a day in front of the X-Box or Nintendo. Assuming the youngster has schoolwork in addition to attending classes, video games can be cut down to a mere fifteen minutes a day, or not at all, in order to help increase a youngster's intellectual and emotional growth.

1. Action figures increase kid’s visual motor skills, spatial skills, strategic planning skills, concentration and creativity. Winston Churchill considered action figures one of his favorite toys.

2. Books should always have a place in a youngster's bedroom, and they can be both fiction and non-fiction. Most grammar schools offer suggestions as to what is age appropriate for kids, but if your youngster is an advanced reader, library books will also work out fine. Being able to sit quietly and read will open up worlds for your youngster, stimulating not only intellectual but also creative capacity. If your youngster has dreams to become a writer, reading is very important as it will show him or her how a story or essay is well constructed.

3. Drawing and painting is another great alternative to video games. Creative skills are especially important for kids who do not have the opportunity to take art classes in school. As sad as it sounds, art and music classes are usually the first to be eliminated when school budgets need tightening. Art is helpful as it also allows a youngster to tell a story about the drawing or painting made.

4. Exercise is one of the best alternatives to a sedentary life of video games, too. Childhood obesity has grown in the past ten years as the result of this lifestyle. Playing outside, running around, bicycling, and creative play outdoors has been beneficial to kids in decades past, along with the monkey bars on the gym set. A few hours a day playing outside will get your youngster in shape and be close to nature, which will also stimulate and extend a youngster's attention span, which is required for reading and schoolwork.

5. Mad Gab increases auditory processing, divided attention and executive processing. It is an excellent game for kids that are learning to read! Mad Gab forces kids to think about words rather than guessing at them.

6. Music lessons have long been shown to help boost those math scores. The ability to read music and play a favorite instrument will also allow a youngster to appreciate cultural heritage, versus just listening to the rap and hip-hop so frequently played on the radio today.

7. O, Monopoly; so many moms and dads and kids have turned to this tried-and-true game, and for good reason. Monopoly teaches money skills, math concepts, investing and planning.

8. Pictionary increases visual memory.

9. Simon Says increases kid’s deductive reasoning skills, executive processing, numerical concept, planning, processing speed, selective attention, sustained attention and visual processing. Simon Says can be played anywhere – and it delivers fun and cognitive enrichment.

10. Taboo enhances word retrieval, builds vocabulary skills, increases one’s ability to think and create synonyms.

11. Yoyos enhance kid’s fine motor skills, dexterity, spatial planning skills and muscle coordination. Additionally, kids love yo-yoing! Learning yo-yo tricks is challenging; there will be frustrated moments for your youngster, but these moments present challenges the youngster must work through. Yo-yoing also assists kids with peripheral vision.

And the list would go on and on…

Be creative, use your imagination!

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