Autism through the lifespan #5: Caregiving

    Autism is characterized by deficits in communication and social skills and rigid, repetitive behaviors. Many with the condition require care from the cradle to the grave.

    Autism is characterized by deficits in communication and social skills and rigid, repetitive behaviors. Many with the condition require care from the cradle to the grave.

    Part five of a nine-part series covering autism’s impact through the lifespan. Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports.

     

    Richard and Kim Antesinis’s youngest son River is severely autistic.

    Richard: He kicks holes in the walls, he tears doors off of hinges, the freezer door will come off about 3 or 4 times a week. He’s gone through cycles, it used to be biting when he was very young, that evolved into pinching, which evolved into hitting, and he’ll come at you and choke you and a lot of physical damage a lot of kicking, a lot of punching.

    Kim: He has attacked us at the Wal-Mart, at the library, so we’re at a point now where we can’t really take him out for fear that he would hurt someone else.

    He weighs a strong 135 pounds and has a very high pain threshold. He’s nine years old.

     

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    He does about 40 hours a week of therapies. He has attacked his mother while she drives. Part of it comes from lacking language to express emotions.

     

    Kim: We had an episode Friday for 45 minutes. He was upset because he wanted to go outside and it was 16 degrees so I said no and so he was choking and pushing and pinching, charging at us.

    Erica Beras: What will you do when he gets to be bigger than you?

    Kim: I don’t know.

    The sacrifices they make for their son are not just physical and financial. They say their sacrifices are social.

    Kim: We just don’t have friends. We can’t go out to be with people and we can’t have people in.

    They don’t envision River working or ever living independently. Their house is on three acres of land.

    Richard: That’s one of the reasons we got a lot this size. We could move up the hill and the state could run this.

    They’d like to open a group home where he can be in residential treatment with staff and a couple other autistic adults. Running it as a business would defer a financial burden to their other young son, who may someday end up taking care of his brother. Until then, as far as they can see, they will be taking care of River.

    During adolescence, a time when many parents are looking towards independence for their children, others are preparing for a lifetime of care.

    Barbara: I don’t want him living away from home. I want him here with me until I die.

    That’s Barbara Wallace, mother to Matthew, 17 years old and severely autistic. He lacks language. His father Mark says that’s the most difficult part of his disability.

    Mark: He becomes agitated and angry, is he mad at something we did? Does he have a headache? Does he have a stomach ache? Sometimes he’ll start crying without explanation other times he’ll start laughing without explanation.

    The Wallaces have two other typical children.

    Mark: There is no conversation, its just not like the relationship with a normal child, you can talk to him but you have no idea what he’s processing, you can say how was school today and you don’t even know if he understands what that means and certainly your not going to get any kind of response.

    The Wallace’s have tried every therapy and treatment that’s become available, mostly to no avail.

    Barbara: It’s vey very very difficult and actually I feel sometimes like my life is on autopilot, I just don’t think I just do, I just go. And if you let the thoughts come into your mind about how difficult it is, how horrible it is, how hard it is, it can interrupt what you need to do. It’s a very demanding life. I have to be on the ball all the time with what’s going on in his classroom, I’m his eyes, I’m his ears, I’m his voice.

    Despite that, she says its all been necessary for him –as well as for her.

    Barbara: I have to be able to look in the mirror someday and say I did everything I needed to do in order to bring him to his highest potential.

    In the next few years, Matt will become an adult – one who soils his bed, needs help showering and shaving and cannot express his feelings. Where will he go once he doesn’t have school filling up his days and what will he do he when his childhood specialists stop making daily visits.

    Mark: Well, that is the big question to some extent, that’s the terrifying thing, we don’t know.

    Mark says not thinking in depth about what lies ahead is in some way a sort of mental preservation- because he already knows what lies ahead.

    Mark: We’re terrified of a group home or any kind of institution. We’ll take care of him until we can’t any longer for now. So we’ll see. (Matt yells in background)

    While there are options for where Matt or any of the other severely autistic children might live, there won’t be enough for the large numbers about to become adults.

    Barbara is a teacher. She stopped working when Matt was young and planned to go back when he was older. But the life-engulfing, kind of round the clock he requires hasn’t allowed her to go back.

    Many mothers of children with disabilities stay home. They say caring for their kids doesn’t allow them to work outside the home. The stresses with an autistic child aren’t just emotional- they can be financial. Children on the spectrum can be costly – and when they require so much care, employers can’t always afford to be accommodating.

    Joy McDaniel has two autistic teenagers. She says the biggest obstacle is finding and keeping a job.

    Joy: Every job that I have been passed over for and every job that I’ve lost, they all understand but nobody, when they are responsible for so much themselves, no one can afford to be that flexible.

    While her daughter was growing up Janice Hebert worked a well-paying, competitive job. But in her late teens, her daughter, who had been diagnosed with PDD-NOS, was hospitalized for suicidal and self-injurious behavior. Janice couldn’t make visiting hours. Her daughter was bounced from doctor to doctor and hospital to hospital. She went through a long battle to gain legal guardianship over her child, who at that point was an adult.

    Janice: She then went through a series over the next 2 and a half years of approximately 17 hospitalizations, in and out rotating about every ten days to three weeks at the most, always different hospitals, always different doctors.

    To handle her daughter’s life, she had to leave her job.

    At one point her daughter was placed in a notorious facility in Delaware where they lived at the time.

    Janice: It was a state psychiatric facility which housed severly mentally ill, criminally ill individuals. Very few people that were diagnosed with autism. I was fearful for her safety, in a variety of settings – sexually, physically and mentally.

    While there her daughter was sexually abused by a fellow patient and by a hospital staff worker.

    Janice: She has post traumatic stress disorder as a result of these.

    The family has since moved to Western Pennsylvania. Her daughter’s struggles have had a profound effect on Janice. She spends her days visiting her daughter, now 23, in hospitals and group homes. She has lost ties to family members, a sense of normalcy and what she calls, good, happy years.

    Janice: I did seek some counseling which was very helpful but in the end the counselor did indicate to me that they felt helpless because there wasn’t anything they could say to me to remove that grief.

    The finances of caregiving don’t just amount to a parent without a paycheck and a person on the spectrum who may never work. It affects us all. In two different studies, the cost of caring for a person with autism over a lifetime is over three million dollars.

    There are reports of a high divorce rate among caregivers. Joy McDaniel, a single mother, recalls many fights with her ex-husband.

    Joy: For him it was the ego thing of, ‘this can’t be, because me, it’s not my fault.’ And he was so stuck on whose fault is it that both of them are autistic. And I tried to explain to him: Its nobody fault, it’s the way it is. But he had zero tolerance, zero coping skills, to the point where after we got divorced shortly, about a year after we go divorced, he moved back to his home town in Michigan and he didn’t speak to us for several years.

    He is now serving in Afghanistan.

    Joy: I’m not gonna say it was the kids autism that made my marriage fall apart. It was one of those, this is so awful to say, it was one of those marriages that probably shouldn’t have happened to begin with.

    In some cases, it’s just hard on relationships.

    Cherri Dulavitch has two young boys with autism. She works the opposite shift as her husband. Her mother moved in to help with the childcare.

    Cherri: Our whole life is them. There is no us, there is no time for us. I think being the mother, I’m the one who deals with the school, deals with the wrap-around, deals with the therapy, works full time and pretty much do this do that, this is what we need and he always says, ‘I don’t get any attention,’ well I don’t have time. And it’s a shame. Because they are not like regular kids, they each take up so much more time and it’s a huge strain on the marriage.

    Regardless of the strains, the biggest hurdle still is who will take care of their children as they get older. And who will pay for it. Sherri Barnett’s son Timothy is 19. She says the only way she knows to keep her son safe and well-taken care of is in her home. When we spoke, her son was in the room. When I asked her who will take care of her son, this is how she responded.

    Sherri: It’s too hard to think about…Timmy turn the lights out…All I know is that, I have to outlive him.

    Erika Beras reports on behavioral health issues for WDUQ in Pittsburg, PA.

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