DE LAS CONTRAVENCIONES, SANCIONES Y RECURSOS IMPUGNATORIOS

relationships (n=10) because of caring for their child. Relationships affected included marriages, friendships, and relationships with their other children. There was a recurring sense of strained relationships throughout the interviews, but some mothers (n=4) reported improved family relationships as they all grew closer to one another to help care for the child.

All but one married mother (n=8) reported a strain on their marriage due to the care demands of their child. Although the participants said there was added stress, only one participant reported a separation from her husband because of the needs of her child. The husband and wife relationships were affected due to increased stress in caring for the child, lack of alone time, a change in day-to-day scheduling, and an inability to find sitters for their child.

Although the mothers did report stress within their family because of their child’s special health care needs, five mothers reported an overwhelming sense of closeness and togetherness occurring in the family because of their child’s condition. They tried to continuously focus on the positive aspects of caring for their child to help them cope with the stressful times. A sense of appreciation, gratitude, and patience was present in the families. Participant 3 discussed this,

It has affected our family life, but in a positive way, it brings us together….Oh yeah, there is always a positive side to it too, and it has helped us recognize the needs around us too. It’s a humbling experience to have a special needs child sometimes you see things differently. So, it definitely has a positive side too.

Families learned to focus on the positive side of caring for their child instead of always focusing on the negative.

The mothers reported that they felt some degree of isolation from their friends and acquaintances. There was an overwhelming sense of “feeling different” that the mothers

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expressed. Four of the mothers felt that others just “don’t understand” what it is like for their family. Participant 15 described,

And a lot of people are like oh you make it look easy, it’s not easy, and I make it look easy, no, you’re not at home seeing all the back work that goes into it, you know what I tell people all the time that I feel like I am running a marathon , up, dressed, changed, med and fed, I call it, you can’t just say Johnny go put that on , go get your cereal, go get the bus, it’s an hour of just him getting ready, braces, and he’s still in diapers, you know people say oh you make it look easy, I don’t know, well that’s because you have grace, yeah well they don’t see me changing poopy diapers and having poop everywhere. Because many of the children require one-on-one care, one mother felt that it was hard for her and her husband to socialize at gatherings because they had to care for their child making it difficult for them to be part of the adult group. Two mothers stated they had no social life because there was no one to help them watch their child while they went out with their friends. Although many mothers reported a loss in friendships, three of the mothers discussed making it a point to go out with their friends often to cope and decrease their stress level. A sense of

socialization was apparent in their lives even though their relationships were not the same as they once were. All of the mothers who did report having friends were in a marriage relationship, and the father watched the children so she was able to socialize. The negative effect on friendships seemed to be directly correlated with a lack of ability to find help caring for the child. Participant 28, a single mother, stated,

What few friends that I have if we try to get together I have to do it after he is in bed because he is so dependent on me… I have to be there to put him to bed, there is no way that I can have a girls night out it has to be at my house before he goes to bed because he

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doesn’t sleep all through the night…. so there really are no family or friends, (her child) and I pretty much stay at home, there is no social life….there is no sitter.

Another recurring problem for these mothers involved making time for their other children. In the summer months mothers felt there was an added stress because of the constant demands of caring for their child that left them very little time to spend with their other

child/children. Some mothers (n=4) discussed a sense of guilt over the loss of time with their other children and reported that the other children felt neglected. This added to the mother’s stress level because she was unable to divide her time equally among the children. Participant 22 stated,

How do you explain all of the attention that this child is getting and to them (the other child) no matter what you do it is still deprivation to some degree. Then you don’t have a normalcy because my (other) child is 15 and I need to be letting him go but because I spend all my time with this child it’s so hard for me to switch to be a caregiver. For years and years and years excessive amounts of attention and then over here (the other child) letting go and when he needs me and it’s just tough.

The special needs of the child inhibited some families from doing certain things with the other children because the special needs child was unable to do those things. This occasionally created anger and frustration from the other children. Parenting was also difficult because parents did not use the same parenting techniques on each child within the home. Overall, the

participants felt that it was very difficult to meet the needs of the other children in the home while caring for their child with special needs.

Theme 3 – Increased Stress. The third theme that emerged from the data was a sense of