Being Out In Public

Challenges occur both out in public and within the home.

Out in public:

• One mother said that it was a challenge to learn how to feel included in her community without apologizing for her child's behavior. "We had to figure out how to fit into society without the unwanted stares, without having to explain his unwanted behavior."
• Trips to the dentist or doctor can be traumatic for all concerned. Kids may become anxious and develop hypersensitivity in either office. They may then act out in ways that disturb personnel or other patients. Going over in advance exactly what will occur, in what sequence, may mitigate some of the problems.
• Any family activity, such as dining out or attending church or a cultural event, becomes difficult and requires special preparation. Some families prefer to have one parent stay home with the child who has FXS while the other goes out with the other child or children.

Within the home:

• One mother is grateful for the support of her husband when so many other parents of children with special needs get divorced. The stress of the situation can strain family ties, both between parents and between parents and children. Other children might not understand why the child with FXS receives so much attention and why parents can't control him.
• Many children with FXS have unusual sleep patterns, difficulty falling asleep, hypersensitivity to fabrics -- which makes them uncomfortable wearing pajamas -- and may wander about the house at night or wake up at an unusually early hour. As a result some families install gates or half doors to prevent their children from roaming around at night. Others find that establishing bedtime routines and creating a soothing environment can help.
• Many babies with FXS have trouble with both bottle feeding and nursing due to oral motor weaknesses which make sucking difficult.
• As a result of problems with inadequate oral sensations, some boys with FXS can't tell they have too much food in their mouth until they choke or gag. Some find silverware to be over-stimulating and prefer to eat with their fingers.
• Dressing can also be a problem due to poor muscle tone and extreme sensitivity to clothing.
• Many boys and men dislike washing and brushing their teeth due to hyper-sensitivity to touch.
• Due to poor bodily cues, many kids with FXS have problems with toilet training.

Within oneself:

• Some parents find it difficult not to blame themselves for their child's FXS, especially if they are carriers.

Are there any special preparations I should make before taking my child on a plane?

Depending on the severity of your child's FXS, you may want to alert the airline in advance that you will be traveling with a child with special needs. In addition, here are some things you can do:

• Discuss with your child the sequence of events that will happen when you leave your home -- you will park at the airport, walk to the terminal with your suitcases, check in, wait in line to go through security, where you will go through a metal detector. Then you will sit and wait to board the plane. Then you will board and sit and wait to take off. Then you will be on the plane for what seems like a long time, where you can do some activities and eat the food that we brought.
• When alerting the airline in advance, discuss how being searched with a metal wand might distress your child. Be sure to prepare your child for this to happen, however.
• Be sure neither you nor your child is wearing or carrying anything metal that could make the detectors go off.
• Bring your child's favorite books, tapes and other activities to help pass the time. CDs help block out stimuli that could overload your child.
• Request that a supervisor screen your child at security, and hand the supervisor a letter explaining about FXS so the person will understand the situation.

My child recently has begun exhibiting aggressive behaviors that I find extremely upsetting. What can I do?
Some people have found that the aggressive behaviors exhibited by kids with FXS are often a cry for help -- a way to get out of a situation in which they feel overwhelmed. The kids know that by exhibiting that behavior, they'll be given a time out or separated from other people. So it is important to keep a written record of exactly what was happening when each aggressive behavior ensued. Then you can look to see if there are any patterns in the situations that led to that behavior.

Some emotional states that have been found to lead to aggression are:

• Anxiety
• Fear
• Agitation
• Confusion.

Once the triggers are identified, then attempting to intervene before the behavior occurs -- by teaching coping skills -- can often reduce the aggressive episodes. Intervening soon enough to prevent the behavior is important, as you don't want the aggressive behavior to become routine. Medication can also help to reduce aggression.

 

I don't know how to handle my son's behavioral problems. While he can be sweet and friendly, he can also be impulsive, distractable and hyperactive. Do you have any suggestions?

Those are typical FXS characteristics. In fact, 80 to 90 percent of boys with FXS also have ADD. Many have low frustration levels.

• The recommended treatment for this particular issue is to come up with a behavioral plan that includes calming techniques and to modify your child's environment to remove triggers.
• It helps to create very concrete plans that have relevant cues and rewards.
• It can also be helpful to use time-outs to punish unacceptable behavior. Time-outs should be short -- while one minute per year of age is a good amount of time for other kids, for kids with FXS whose attention span is often shorter, a shorter time out would be recommended.
• When a child does something wrong, such as bite another child, a helpful response is to be very brief, and say: "No biting; time out." Then, wherever you are with the child, implement the time-out immediately, turning the child away from others and blocking the child's exit. Don't pay attention to the child during this time, as your lack of attention is the main punishment. If your child tries to get away, just repeat the phrase: "No biting, time out.

My child doesn't handle transitions well, and I am worried about what will happen when she begins attending public school

Transitions have to be planned carefully for those kids with FXS who don't like changes. 

• One helpful option is to place pictures of the schedule for the day on a board, or on a card.
• Changes, such as an assembly, can be written out or pictured and inserted in the proper sequence. 
• If you know that one of the activities will be disturbing to your child, see if it can be followed up with a calming activity. An example would be a loud assembly, which would disturb your child, followed by time on a beanbag chair, or another activity that your child finds soothing.

When my child goes to school, are there things that can be done to foster success?

Interventions that work for children with ADHD can also help those with FXS. These include:

• Seating the child near the teacher and far from distractions
• Allowing the child to use a private work area at times
• Giving your child brief tasks
• Offering visual cues for sequences of events
• Implementing active interactive lessons, in which your child doesn't need to just sit still and listen. 

I would like to take my child to go somewhere outside of our home -- whether to church, a restaurant or a film. But he has been so disruptive in the past that I am hesitant to try again. Any suggestions?

One solution is to help your child to anticipate the situation.

• Go over the sequence of what will happen, how many people will be there, what the room will look like, how long he will have to sit still, what will happen if he needs to get up.
• If you want to go to a restaurant, bring home a menu so your child can anticipate the options and think about what he would want to order.
• If you are going to church or a film, try sitting in front to see if it helps your child pay attention. If that doesn't work, try sitting in the back to enable an easier escape if your child can't sit still.
• Many children with FXS benefit from medication for ADHA, anxiety, depression, or aggressive behaviors.

What social challenges do kids with Down syndrome face?

Children with Down syndrome are often very friendly. However:

• Most are socially immature and find it difficult to keep up with other children their age physically, emotionally and cognitively.
• Relationships with kids who don't have Down syndrome are often lopsided, not equal, as the kids with Down syndrome want more from them.
• Meeting other kids with Down syndrome who are at their level of the spectrum may enable equal friendships.

How aware are kids with Down syndrome of their differences, and how does this awareness affect them?

Certainly kids in the more advanced part of the spectrum are aware of their differences. Awareness can lead to insecurity:

• One child who was mainstreamed would only answer a question if she were sure she was correct.
• That child also refused to read aloud in class after once having a difficult time with it.
• Similarly, that child refuses to participate in timed running tests in gym as she is aware that she is much slower than the other children.

How might having a child with Down syndrome affect family life?

Certainly, family life will be impacted in many ways.

• Everything is slower with a child with Down syndrome, which means that more time and energy are spent on that child's needs. This means there is less time for others.
• Feeling "different" when out in the world can make families reluctant to do things other families do. Some families resent stares; others become accustomed to them.
• In one family, the older brother resented the fact that his sister got more attention.
• Some siblings are teased about their "retarded" sibling.
• On the positive side, siblings may become more sensitive to others and less self-centered than they otherwise would have been. Studies of families of children with Down syndromes have found that the siblings tend to be more mature than other kids their age, more accepting of differences and more understanding of the difficulties others may be having -- in general, more empathic.
• Some families do well; others do not.

Once my child developed epilepsy she went from being a straight-A student in honors classes to a B student in standard classes and now feels she is "dumb." Is there anything I can do about this?

Unfortunately, some of the seizure medications interfere with brain activity and leave children slow at processing information. Remind your child that she is smart but that the medication has this side effect. Speak to the doctor to see if another medication could be tried that might minimize this side effect. Suggest that she join a support group, either in person or on line.

 

My daughter's epilepsy medication led to a weight gain of 30 pounds. This exacerbated her already low self-esteem as a result of the epilepsy. How can I help?

Any child would be upset by a significant physical change. Speak to your child's physician about the consequences of this medication and see if it is possible to substitute another one. Make sure your doctor is taking your child's feelings seriously. Also, suggest that she join a support group, either in person or on line.

 

We were told that not getting enough sleep can trigger a seizure. But how do I handle that when my child is an adolescent and has a lot of homework and school activities that keep her up late?

Here are some suggestions:

• Children are usually motivated to avoid having seizures at school, so remind your child that going to sleep at a reasonable time will help prevent them.
• In order to get adequate sleep, it may be necessary to take courses that offer less homework or to curtail outside activities that require a lot of time.
• If you need to curtail activities, try to let your child continue at least one in an area of his/her strength, to help foster self-esteem.

When my child goes to play at the homes of friends, should I prepare the family for the possibility that he might have a seizure?

Here are some thoughts:

• If your child hasn't had a seizure in over a year, informing and educating the family may not be necessary. Many children will not want to tell others about the epilepsy unless it is absolutely essential. On the other hand, some  parents prefer to let the host family know that their child has epilepsy, that it is very unlikely a seizure will occur, and then tell them what to do in the unlikely case that a seizure does occur.
• If your child's seizures are not well controlled yet, you will have to prepare and educate the family.
• If the other family is uncomfortable, or if your child is reluctant to tell others, arrange to have the children come to your house, instead.
• Refer the family to the video "Take Charge of the Facts," which will educate them about the different kinds of seizures, what to expect with each one, and what to do if one occurs.

My child has very brief (absence) seizures in which she loses awareness, but it is difficult to tell that she is having one. How do I explain this to her teachers and friends, who may think she is just "out of it" or "stupid" when she also doesn't want to be known for having epilepsy?

One possibility is to ask your child's teacher to explain that kind of seizure to the class, but not specify who has it. Or the teacher could invite a team from your local Epilepsy Foundation to come in to explain what epilepsy is to the class. Or you could ask the teacher to show the video "Take Charge of the Facts," in which kids with epilepsy and their doctor discuss the different kinds of epilepsy and what to do if you witness a seizure. This type of education can help prevent teasing, which can be very destructive to a child's self-esteem.

 

My child wants to attend overnight summer camp like her friends do. But I am concerned about her safety. Is there a safe place I can send her?

The Epilepsy Foundation works with certain camps to provide a safe environment for kids with epilepsy, and there are also other camps for kids with epilepsy. Check them out with your child and see if any seem safe to you.

 

My child will be starting at a new school in the fall. What do I need to tell the school about my child's epilepsy?

What you tell the school will depend on the severity of your child's epilepsy.

• If you have the epilepsy under control, tell the school nurse what kind of epilepsy your child has, and emphasize that it is under control, as some school nurses become anxious that they may have to handle epilepsy.

• If the epilepsy is not yet under control, you may want to meet with the school nurse before the school year begins. Tell the school nurse:
• what to expect if your child has a seizure
• how long it will last
• what behaviors will occur
• how to respond
• what condition the child will be in after the seizure
• whether your child will be able to continue working, or whether he or she should he should be sent home if a seizure occurs

• Whether or not the seizures are controlled, tell the school:
• how to notify you if a seizure occurs (by immediately calling or by sending a note home)
• under what circumstances the school should call 911 and/or your doctor
• how to contact your doctor, you, and another relative or close friend who will know how to handle the situation.
• about any changes in your child's condition -- in the kinds of seizures, as well as in the medication being used and possible side effects
• how the school nurse and school psychologist can best help your child deal with the medical and psychological aspects of epilepsy.

What special considerations must we be aware of when eating out?

It is best to call the restaurant in advance and speak to the chef to make sure there are options for your family. Sometimes, if the chef knows in advance that a person on a gluten-free diet will be coming, he or she will prepare something special. When ordering at any restaurant:

• Check all ingredients of any items on the menu
• Check the way the food was prepared
• Ask about the preparation surface and pot or pan, to make sure it was completely cleaned before preparing this item. If not, it may have been contaminated with gluten.
• Never assume that anything in a restaurant is safe. Always ask. Even corn chips may have been fried in a pot that had been used for flour tortillas, and turkey may have been injected with something containing gluten before being cooked. Eggs, for example, would normally be a safe choice, but you must be sure they weren't prepared on the same grill as the pancakes. And if they are on a breakfast buffet, find out what else was used to prepare them.

Are there some tips for when we are out and will want lunch?

It's always helpful to bring along supplies of peanut butter and jelly on gluten-free bread or crackers. Other options are gluten-free cold cuts instead of the peanut butter. That way, if you don't find any appropriate restaurants, you'll be okay. If necessary, you can eat it for dinner, as well.

 

My child wants to blend in with the others in school. Are there any safe snacks that won't stand out?

Always check the ingredients of any particular items, but you may find safe versions of:

• Rice crackers or cakes
• Fruit
• Vegetables
• Tuna
• Eggs
• Chips (potato, corn or soy)
• Popcorn
• Corn nachos
• Tacos
• Corn Tamales
• Nuts
• Cheese
• Cottage cheese
• Fruit rolls
• Seeds (pumpkin, sesame, sunflower)
• Hummus
• Dried fruit
• Marshmallows
• Chocolate
• Jello
• Corn quesadillas
• Puddings
• Custard
• Yogurt
• Juices that are 100 percent fruit
• Milk
• Hot chocolate made from pure cocoa butter
• Tea
• Coffee
• Most carbonated drinks

What do I do about school birthday celebrations? It will be a constant problem and source of pain for my child.

It is true that not being able to have birthday snacks like the other children will be difficult for your child. Here are some things you can do that may help.

• Try to have a conversation with your child's teacher or teachers before school begins, and ask them to alert you in advance when a child will be bring birthday snacks to school. That way, you can send an alternative snack with your child.
• If the teacher feels that the need to alert you will be too onerous, offer to bring in bags of safe chips that the teacher can store and then give your child when a birthday celebration occurs.
• With your child's permission, offer to educate the students about celiac disease so that the other kids may be more sensitive to the issues your child faces. Explaining that just a tiny bit of gluten actually damages your child's intestine may help them understand why having a birthday cupcake "just this once" is not possible.
• Suggest that your child join a support group where there are other kids in the same situation.

What should I do when my child with celiac disease goes to play at a friend's house? I can't expect them to have gluten-free products on hand.

One solution is to send gluten-free snacks along with your child, enough for any other children who may be playing at the home. If the other kids are willing to eat those snacks, your child won't feel deprived. If they aren't willing, at least your child will have something that is safe to eat.

How should my child handle a school trip in which she will be away for several days?

Here is what one teen with celiac disease counsels:

• Planning in advance can help decrease stress on the trip.
• Try not to let food concerns prevent you from enjoying the trip.
• Contact the teacher in charge to find out where the group will be eating. Many others with food concerns will probably be contacting the teacher, as well.
• Then contact the restaurants the group will eat at, and find out if they will be serving anything safe. If you will be staying at a facility like a camp, get the phone number of the camp chef. Most chefs are used to dealing with people who have celiac disease.
• Bring along Ziploc bags containing gluten-free cereal that you can have for breakfast. If you eat that in the room before breakfast, most likely you'll be able to grab some fresh fruit at the group meal, or even possibly order eggs.

How does having a child with AS affect your family when you are out in the world?

Here is one mother's response:

"His issues affect our family life usually when his anxieties or fears come into play. We went to a Halloween Party and he spent all night upstairs because someone was dressed as a bloody doctor. The fake blood freaked him out. When he becomes upset over something, he can yell, scream, or just hide. This odd behavior embarrasses his sister. When we go away or out to eat, she always feels people are looking at him. And they are not. She is very conscious. She loves her brother, and interacts beautifully with him, but when others are around, she is very embarrassed of him. She is 9.

We limit ourselves on the activities we do as a family. We don't go to the movies usually. We would not go to an amusement park like Disney because of his fear of dressed up characters. But we do go hiking and spend time with family. We like to find ways to get out and enjoy the community yet keep him protected from the things that scare him.

Over time he has gotten better. His anxieties have lessened and how he reacts to anxious moments has gotten a whole lot better, overall. We try not to seclude him, but expose him to things with a protective net -- so to speak. It takes planning and thought when we go out.

We realize the difference when we just take our daughters. The trips we take are so much easier, we are not on edge wondering what he will say or do."

Parents of children who have autism learn quickly that public outings need to be planned for and that the child has to be prepared for what to expect, step by step. Doing so can make a hellish experience into a manageable one. Nevertheless, parents need to be prepared for disapproval from members of the public who don't understand.