Cerebral Palsy: Social and Educational Issues - early intervention, rights,
evaluations, special education, IFSP, IEP, IHP and transitions to adulthood.
Family

Any change within a family has the potential to create stress in the family situation. When children are involved, it can sometimes seem like a wise thing to hide the facts to avoid an emotional meltdown. This, however, is never the way to go about bringing your children into the reality of change. Since the unknown is always worse than the known, you should always give your children enough information to ease their fears.

You don ‘t need to get technical, but give them information appropriate to their age-levels. For instance, if you are helping your cerebral palsied child with some exercises to help with their movement and muscle tone, their siblings may be curious. Instead of trying to explain the physiological reasons behind the exercises, you might say, “They need some extra special exercises to help their legs get stronger”, or “Their muscles don’t work the same as yours; he can’t move around as well and he might not for a long time, so we need to help him a little more.” Try not to tell you children half-truths, even if it seems easier at the time. Even if one answer may be easier for you to explain why your child is crying, saying he’s sad when it is because of his cerebral palsy will only further confuse his siblings.
Assuring your children that their sibling cannot die for cerebral palsy is important, as they will no-doubt quickly sense that something is wrong due to the frequent visits to many different doctors and therapists. You should also try to reassure your child that it is okay to feel strongly about their sibling’s disability, and that it isn’t anyone’s fault that they have cerebral palsy. Remember, a straightforward approach diffuses fear and helps your child feel important and a vital part of the care-giving.

Once you have explained your child’s disability to your other children, you should still expect to have to re-explain it. Even once they understand that their sibling is disabled, they still may not know what their sibling can and cannot do, and as the disabled child grows and becomes stronger or begins to master the use of special mechanical aids and communications devices, what they can and cannot do will change drastically. You can help this process of understanding along by periodically pointing out your disabled child’s small victories to his or her brothers and sisters. For instance, “Remember when he couldn’t walk? Now he can run on his crutches!” Or, “Isn’t it amazing how she uses her communication board? She’s faster than all of us now!” Not only will this help them to better understand their sibling’s progress, it will also be positive reinforcement of their attitudes and feelings towards their disabled sibling.

As a parent, having a new child with special needs can be overwhelming, and having other children in the home already can lead to much competing for attention, even when the newborn is not disabled. Be assured that this is a normal reaction for older siblings, and as long as you do your best to balance the attention, it should eventually dissipate.
Having a child with special needs means that they may not always be able to accompany the family on special outings. For instance, if your family has planned to go on a picnic, but there is quite a lot of hiking required to get there, it is likely your child with cerebral palsy will not be able to go. Instead of canceling the whole family outing, as the other siblings may feel they are suffering on the behalf of your cerebral palsied child’s enjoyment, have one family member stay home and plan a special activity for just the two of them. This will help to avoid possible resentment by other siblings.

Having other children in the home will in the short run complicate the matter of your child’s special needs, as the stress of the adjustment may seem greater with more family members. In the long run, however, having other children in the home can immensely aid the social development of both the child with special needs and his or her siblings. To begin with, your child’s siblings can help him or her to develop social skills, as it is not uncommon for cerebral palsied children to have some developmental difficulties in the realm of social interaction. Being comfortable around people closer to his or her age will help him learn to be himself, and not feel like he is always under pressure to perform. As for your children who are not disabled, studies have shown that having a child with disabilities has a positive influence on the lives of children in the family. These studies have shown that “children who are actively involved with a brother or sister with a disability have a better sense of themselves and better relationships with others. They are also more sensitive and aware of the world around them.” Furthermore, having a child with cerebral palsy in the family can result in new perspectives and a tolerance that might not have occurred otherwise.

Children, however, are not the only members in your family equation hat must be taken into account. Grandparents and other relatives will also need to be told about your child’s disability. There is no universal way to break the new of your child’s cerebral palsy to your relatives, and the manner in which you do so will depend greatly on your relationship with them and whether or not they had any prior knowledge of any worries you may have had about you child’s development. However you decide to tell them, be ready for a series of reactions. Like you, they may feel grief, anger, shock, denial or a vast array of other emotions. Your parents may feel that they are somehow to blame for your child’s cerebral palsy because of genes, or they may even attempt to pin blame on you, your spouse or the medical profession.

After they have begun to deal with the reality of your child’s disability, family members will often overwhelm you with “cures” they have read about, or referrals to specialists they have heard about. While this behavior may be unsolicited, it is rarely meant as a means to belittle your parenting ability, and is generally just bourn out of a desire to help your child.

Grandparents in particular tend to shower disabled children with affection, and are often tempted to smother, overprotect or spoil your child. This should always be discouraged, as it can impede normal social development and case resentment among other family members grandchildren.

The adjustment of having a new family member with cerebral palsy is usually a large one, but is definitely not where your family’s usefulness ends. While it is important for everyone after they have adjusted to treat your disabled child as an equal member of the family, it is also essential to the child’s progress for his or her family to be their best source of support. Growing up with cerebral palsy is difficult, and an important role of the family is to take away any undue difficulty. It doesn’t have to be just you that helps your child with exercises and stretches, or plays with him or her to help their skills develop. The whole family can be involved in the development of your disabled child, and having an understanding and supportive family while growing up with cerebral palsy can make all the difference.

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Cerebral Palsy: Social and Educational Issues - early intervention, rights,
evaluations, special education, IFSP, IEP, IHP and transitions to adulthood.