Effect on Family Life

How having a child with a special need will affect your family's life depends on what and how severe that special need is.

• In general, you will probably be spending a significant amount of time and energy on your child who has special needs.
• This can limit how much you have left to give to other members of your family, which can lead to problems in those other relationships.
• To prevent that from happening, try to get respite care, which will enable you to spend time with others in your family and on yourself.?Respite care can be given by a relative, friend, neighbor, or special needs caregiver.
• Try to spend some alone time with each of your other children every day and pay attention to their emotional status. They need your time and energy, too.
• Marriages of parents of kids with special needs undergo a great deal of pressure. Work on holding your marriage together. Try to set aside time to spend alone with your spouse and to show appreciation for each other's dedication to your child.

Here are some suggestions:

• Take advantage of respite care and schedule time to be alone with your spouse -- whether going out for an evening or taking a vacation alone together. One couple found that the first few days of their vacation were usually spent letting out all the frustrations they had held in until then, while the second half tended to be more loving.
• Express appreciation frequently for all the things your spouse is doing to hold the family together.
• Make time every day to talk to your spouse privately.
• Be sure to celebrate anniversaries, birthdays, and special moments.

Here are some tips:

• Give your other children permission to express all of their feelings, positive and negative, about your family's situation. Then acknowledge all the feelings, good and bad, as a way to give your child permission to feel this way.
• Don't give your other children too much responsibility for their siblings with special needs. Let them help, but don't overburden them.
• Pay attention to the moods of all of your children. If you notice any changes, specifically anxiety or depression, be sure to get that child help as quickly as possible.
• Pay attention to what is important to each of your children, and try to spend individual time with each one regularly.

One of the ongoing problems many parents of children with special needs confront is that medical issues arise frequently and interrupt?the parent's work life. Although employers may allow sick days and time to care for sick relatives, too often parents of kids with special needs require more time off than is granted, and as a result find it difficult to keep up with their job. This is unfortunate as these same parents may need the paycheck and medical benefits even more than other parents, but currently?there is no solution to that dilemma.

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 in the family.
• 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 some families, the other siblings resent the fact that the child with Down syndrome gets 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 syndrome 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.

My child's epilepsy has upset his sibling. How should I handle that?

Here are some suggestions:

• Witnessing the seizure of a sibling can be very frightening to a child.
• Educate your other children about the illness and prepare them for witnessing seizures, explaining how long a seizure will usually last, what will happen during and after it, and what they can do to help. Knowing what to expect can ease a sibling's anxiety.
• Some children misunderstand the cause of seizures and blame themselves for a sibling's epilepsy. Let them know that they are not to blame.
• Some siblings may fear that the epilepsy is contagious. Reassure them that this is not true.
• Some siblings feel that they will be harmed by the stigma of having a sibling with epilepsy. Encourage them to educate others about epilepsy -- that it is a medical condition and not a cause of shame.
• Some siblings resent what they perceive as the child with epilepsy being favored in order to prevent a seizure. Try to treat all children in the family the same, despite the epilepsy, if at all possible. And try to give your other children equal attention.

I'm not sure whether to make our home gluten free for everyone, or to just prepare gluten-free foods for our child who has celiac disease?

When one person in the family has celiac disease it affects everyone. It is usually recommended that the home become gluten free. This will involve explaining the situation to the whole family and setting up clear rules about what can be brought into the home.

How do siblings of kids with celiac disease handle the deprivation that they suffer if the home is made gluten free?

Of course, most siblings will resent being forced to follow the celiac disease food restrictions while at home. You may want to help mitigate this by:

• Scheduling time to take your other children out for special treats that are not allowed in the house.
• Encouraging your other children to ask their sibling what having celiac is like, how he or she is feeling, what it is like to go see so many doctors.
• Inviting your other children to become part of the solution as a way to give them a sense of mastery over the situation and feel included rather than left out.
• Asking your other children to help shop for gluten-free products, cook new recipes, taste new food.

Besides resentment, are there other feelings siblings may have?

Kids may have a range of reactions. It would be helpful to give them permission to have their varied reactions and not to express disapproval of them. Let your children know that you understand and accept their feelings.

• Some feel vulnerable and worry that they or their parents will develop an illness. They may become phobic, sure that the slightest pain is the symptom of something serious.
• Some worry about their sibling who has the disease.
• Some are angry that their sibling receives so much attention.
• Some feel guilty, fearing that they caused the disease.
• Some wish they had the disease, so they could get all the attention.

What challenges does FXS present for a family?

Challenges occur both out in public and within the home.

Out in public:

• Learning how to feel included in the community without apologizing for your child's behavior can be a difficult lesson.
• Trips to the dentist or doctor can be traumatic for all concerned. Kids may become anxious and develop hypersensitivity in either office. They could act out in ways that disturb personnel or other patients. Going over exactly what will occur in advance, and in what sequence, may mitigate some problems.
• Any family activity (such as dining out or attending church and cultural events) 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 woman expressed gratitude that her husband was so supportive and that their relationship had stayed strong despite the high divorce rate among parents of children with special needs. Her daughter, however, finds it hard to comprehend why her brother gets to do things she doesn't and why her mother has so much trouble managing him.
• Many children with FXS have unusual sleep patterns, difficulty falling asleep, hypersensitivity to fabric 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 wandering. Others find that establishing a bedtime routine 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.
• Due to problems with inadequate oral sensations, some children with FXS can't tell they have too much food in their mouths until they choke or gag, and can be messy eaters.
• Some find that silverware is over-stimulating and so prefer to eat with their fingers.
• Dressing can 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-stimulation when they do them.
• Due to poor bodily cues, many kids with fragile X have problems with toilet training.

Within Oneself:

• Some parents (particularly carriers of the FXS gene) find it difficult not to blame themselves for their child's condition.

How will having?a child who has cerebral palsy affect our family life?

That will depend on how severe your child's condition is.

• In general, you will probably be spending a significant amount of time and energy on your child who has cerebral palsy.
• This can limit how much you have left to give to other members of your family, which can lead to problems in those other relationships.
• To prevent that from happening, try to find respite care, which will enable you to spend time with others in your family and on yourself. Respite or ongoing care can be given by a relative, friend, neighbor or paid caregiver.
• Try to spend some alone time with each of your other children every day and pay attention to their emotional status. They need your time and energy, too.
• Marriages of parents of kids with special needs undergo a great deal of pressure. Work on holding your marriage together. Try to set aside time to spend alone together and show appreciation for each other's dedication to your child.

How does autism affect family life?

Here are two perspectives:

A mother's perspective: "The child with autism sucks up your physical, financial and emotional resources, leaving little left for the rest of the family. You invest your time, financial, physical and emotional resources and don't get that much in return. It takes a?huge emotional toll for the rest of your life, yet brings very little joy.

A sibling's perspective: When Danielle Chelminsky was 16, she wrote: "I hated that my brother's needs came first and he got more attention than I did. 'I wish I had autism so you would play with ME for a change!' I would think. I thought my parents loved my brother more than me. I resented him, and blocked him out of my life. I was closeted about him since I thought his disability made my friends judge me. I hated being his sister."

Did the experience of having a family member with autism lead to any wisdom or helpful insights?

One 16-year-old sister said, "Ben will never go to college or have his own family - things that we consider to be normal. Yet who is to say "normal" people are necessarily happy? Ben, on the other hand, is. Being a simple-minded kid, simple things make him happy. He likes Chinese food, swimming and playing the recorder. No one knows exactly what he is thinking, yet the smile on his face while dancing at his bar mitzvah makes me wonder if he is the one who is normal and we aren't. We make our lives so complicated; we take for granted what we have. Why don't little things make me as happy as they do for Ben? Maybe Ben isn't a complete tragedy. Maybe he was put in our family to teach me something about myself."

How can I handle being out in public with my child who has autism?

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.

How does Asperger syndrome affect family life?

Here is what one mother said:

"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 what he will do."

What is it like to be the parent of a child with severe autism?

It is very difficult to do anything else in life when you live with a child with severe autism. That child is extremely needy and the caregiving is all encompassing. It is hard to separate from meeting that child's needs.

Care.com is a website that lists caregivers throughout the United States who provide assistance to people with special needs. You can search for caregivers near you and review caregiver profiles including photos, references and background checks, and work history. For specific listings of special needs caregivers, go to Care.com.