INSPECTORIAS, AUDITORIAS FORESTALES Y MECANISMOS DE CONTROL

normalcy (n=11) since the child had been diagnosed with a special health care need. This loss

was apparent in family life and outside relationships. Participant 20 concluded,

It affects everything that you do, you know, from your other kids, I mean we have older kids, you know, it affects them, it affects them, we were big campers and stuff and she can’t sweat, so we don’t do anything outdoors now you know, from every aspect it affects your life.

The loss was evident in the lost dream for a normal family. Participant 18 stated,

Well you never expect to have a child with special needs, um, that was a tough blow, and then since my boys are older they have been able to help some but they get super

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frustrated with her autism behaviors, they don’t get it, it’s just different than what we expected but I guess that is true with any special needs family. Um, I am a lot busier than I expected to be at my age, I am a lot more tired, it’s just harder than I expected it be at this stage in my life.

Mothers reported a complete change in their normal routine since they began caring for their child, which created a sense of loss. Although this loss of normalcy was not always associated with grief or perceived as completely negative by the mothers, it was experienced by all

participants. Participant 22 stated, “You can’t have a family unit with autism, you know, even a family meal can be really difficult.” Participant 20 concluded,

I don’t know if it’s (the child’s condition) not become our lives, everything revolves around it – if it’s too hot you can’t go somewhere, if it’s too cold you can’t go somewhere, she has to be in bed at a certain time, have her meds at a certain time – I think for the most part it has (become our life).

The participants discussed the loss of normalcy within the context of their family life due to the demands of caring for the child. Simple everyday tasks at home were identified as

challenging by the participants. The loss of a typical home environment was also a recurring concept for some mothers (n= 3). Participant 16 stated,

Your house is like a therapy house and not a living space really…its very routine and monotonous and I hate it, it’s the same thing at the same time every day and it’s not fun. I feel like the elephants on the jungle book where its march, march all the time, its

redundant to the point of you want to scream because you know at 7:00 the dishes have to be done and the trash has to go out or we are going to have a fit… It has to be that way – it’s just not fun – there is no fun in it, the planning that goes into it, you can’t throw a

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monkey wrench in there, it’s planning for everything, what time you do the laundry, what time everybody gets a shower, it’s all around his little world.

Caring for the child was described repeatedly as a complete life change that was different from the previous way of life. This created a lost sense of normalcy compared to other families. Participant 3 concluded, “We can’t do everything like a typical family would do.” Participant 21 stated, “We can’t ever have what we had (prior to child’s diagnosis).” All of these statements reinforce that families experienced a loss of normalcy within their family when caring for their child with special health care needs.

The loss of normalcy theme (n=11) was also discussed within the context of

relationships. The mothers expressed a change in their relationships with their friends, spouses, extended families, and other children because of caring for their child. Four of the mothers reported that they had lost the ability to have normal relationships with their friends and families because of their child’s condition. This isolation from others was deemed as a loss. Participant 16 stated, “Initially it was the isolation because I don’t know if everybody from the outside world thought it was contagious or what but everybody just disappeared.” Participant 23 concluded that most people she had associated with prior to the diagnosis of her child’s PTSD chose not to spend time with them anymore leading to a sense of isolation that had not been previously normal for their family. The inability to participate in certain family functions, activities with friends, or job opportunities was described as a loss from their previous normal relationships. Participant 28 stated,

It has made life really hard and it has played a huge factor in the loss of my job, failure of my marriage, and lack of being able to get new employment…. we can’t go to my sister’s

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house anymore because it is not child proofed, and they are not very patient; they are not mean to him but they can’t deal with the meltdowns, the screaming, the crying.

The theme of loss of normalcy was seen throughout the discussions regarding the mother’s relationships.

Another way that loss of normalcy was recognized was through the shattered idea of a normal family. Participant 21 said, “We have our families in this beautiful box, maybe I shared that with you, and when she (the child) came home it was like everything exploded.” This was described as a loss when the families realized their child was not “normal” anymore, and their life was not going to be the same again. Traditional ideas of family life were shattered for some mothers (n=6) when they realized the care that was needed for their child. Participant 22 stated, “My thought of what the family life should be is very traditional. And that has been a dream that shattered, you can’t do it.” Mothers reported chaos at home leading to exhaustion that is not typical of other families. A sense of a constantly changing life with their child caused a loss of normalcy for the mothers. It was very clear through the discussions that a loss of normalcy regarding shattered dreams of family life was common.

Although mothers (n=7) reported a loss of a certain dream for their family, a sense of adaptation, realization, and acceptance of the way their life had turned out with their child was apparent. This life they were living was their reality and they had come to better understand their life with their child and family. Mothers who expressed these ideas had gone through an initial adjustment period with their child’s diagnosis and accepted their new “normal” reality with their child. Participant 16 stated, “And then you reach that point of acceptance, and there is still the isolation. So then the gears changed to the acceptance and living with it.” Several of the mothers (n=4) reported a sense of optimism and hope as they had “gotten better” at caring for their child.

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