Engagement and Assessment of Working With Families in Divorce

What should teachers consider when working with students with autism spectrum disorder?

Page 5: Working with Families of Children with Autism Spectrum Disorder

Family involvement is one of the well-nigh important—if not the most important—factors in ensuring a child's success at home and in school. Keeping the child and family at the center of the process will help IFSP or IEP teams create service plans that are guided by the kid's needs and that tin can exist supported by their families. Family members—parents, caregivers, siblings—can provide information such as:

• The kid'due south strengths and needs
• The cultural and developmental appropriateness of goals and intervention strategies
• Supports that are feasible for the child's family based on their unique circumstances (Continue in mind that families of young children often implement interventions in the home environs.)

Return to the Challenge: Viable Family Supports

Recollect that David, the child nosotros met in the Challenge video, is non-verbal. During the IFSP meeting, the multidisciplinary team suggested that David's family work on his communication skills for 15 minutes each night at dinnertime, a naturally occurring routine. Yet, David'southward mom indicated that she is alone at dinnertime because her hubby is at work at that time. In addition, she is busy at dinner feeding David's vi-month-old sister, who is only kickoff to eat solid foods. Afterward hearing from David'due south mom and discussing this further, the team decides that its original goal is simply not realistic. They determine, with the mom'south input, that bath time is an enjoyable time for David and a much better time to work on his communication skills.

Listen as Wendy Stone discusses the importance of involving families when working with children with ASD.

Wendy Stone, PhD
Professor, Educational Psychology
Director of the Research in Early Autism Detection and Intervention Lab
Academy of Washington

(time: 1:41)

Transcript: Wendy Stone, PhD

There are and so many reasons why families have got to be involved in any intervention or educational activity that involves a child with autism. Start of all, they know their kid the best. They can tell you what'south typical, what the kid'due south beliefs is in situations that the teacher volition never be able to see. Parents may accept figured out how to bargain with sure behaviors, or how to manage or foreclose certain behaviors, and those tips can be actually of import for teachers. 2nd, you lot really desire parents to exist able to use similar strategies at home that are used in the school or preschool setting. Then if you want to generalize skills across settings, which is of import for any kid but sometimes more than challenging for children with autism, it's of import to have some carryover. For example, if a instructor'south working on playing appropriately with a train set up by rolling a train on the tracks then a parent may want to also practice something like that at home with a similar material. Another reason is that parents are more likely to work on behaviors that are of importance to them and to their home functioning. Parents see their children during everyday routines, which tin can be very challenging. We want parents to exist able to use these strategies at dwelling house in meaningful situations, not just inside the school setting. And so it's important that the skills that are learned at school also translate to home. We can increase the efficiency of learning if we can piece of work together with families.

Parent Challenges

Another way the team can keep families in the center of the IFSP/IEP process is to understand the potential struggles and challenges that families of children with ASD might run across. Additionally, keep in heed that families can be divers in a number of ways (e.g., single parent household, extended family living together, foster family unit) and therefore might require different kinds of supports. Below are some challenges often experienced by the families of children with ASD.

For Your Information

ASD is oft referred to equally an invisible disability. That is, in that location are no physical characteristics that readily identify a child with ASD as having a disability. Because these children look like typically developing children, others frequently view their behavior equally inappropriate and acquaintance it with bad parenting skills. Parents report that this causes stress and feelings of guilt.

• High divorce rates – Near twice as high as in families of typically developing children
• High stress levels – Due to factors such equally the child's:
  • Cerebral impairment
  • Challenging behavior
  • Language delays
  • Unpredictable beliefs
  • Hyperactivity
  • Inability to self-regulate
  • Lack of cocky-care abilities
• Lack of time – Lack of caregivers with knowledge of ASD reduces the amount of time a parent has available for piece of work and leisure activities.
• High levels of fatigue – Children with ASD can require a lot of intendance and supervision. In addition, some take slumber issues that interrupt their caregivers' sleep.
• Fiscal burdens – Costs for services and supports (e.g., medical services, therapy) are high and not covered in full by insurance or other programs.
• New roles – Parents assume roles such as child advocate, example manager, inclusion specialist, transition specialist, or medical skilful.

To larn more about the challenges of raising a child with a disability, visit the IRIS Module:

• Family Date: Collaborating with Families of Students with Disabilities

Showtime, heed equally Nancy Rosenberg, a parent of a young adult with ASD, describes some of the stressors her family experienced. Side by side, Andy and Becky talk about the challenges of parenting their child with ASD.

Nancy Rosenberg, PhD
Parent of a young adult with ASD
Director of Distance Learning ABA Program
University of Washington

(time: 5:09)

View Transcript

Becky and Andy
Parents of a child with ASD

(time: 3:36)

View Transcript

Transcript: Nancy Rosenberg, PhD

I remember Brian's childhood was unbelievably stressful for everybody involved. There were simply and then many stressors. There was the financial stress. I learned about ABA pretty early on, and as speedily every bit possible got an ABA programme going for him, only that was before insurance was paying for information technology, so that was incredibly expensive. You couldn't use typical babysitters, considering they couldn't handle Brian, and so babysitting price $20 an hour instead of $half dozen an hour similar other parents were paying. So all of the financial stuff was very stressful.

Brian'south behaviors were incredibly stressful. He needed watching all of the time. Nosotros used to joke that you lot call back that merely by adventure he might start doing something appropriate but it never seemed to exist true. He would climb on anything and was just obsessed with climbing on things. All of our bookshelves were eventually bolted to the walls after they had come tumbling down. We had bars put on all of our upstairs windows. He would become on tiptop of anything. He would jump anything or smear annihilation he could find, whatsoever shampoo bottles, dish lather, a milk jug, a cup of coffee, or a diet coke left out. He was very attracted by water of whatsoever kind. Nosotros take many stories of when we'd be out with him, and he would somehow come across water somewhere and simply make a beeline for information technology and go right in.

He'd take huge tantrums; you lot know, pee and poop everywhere. Information technology took years to get him potty trained. And of course poop was something that was and then fun to smear. Many, many, many nights spent cleaning upwards poop that had been smeared all over the place. And his stim was very stressful likewise. He had very loftier rates of self-stimulatory behavior. I was reading everything I could at the time, but back then the going line was don't let them stim. Every infinitesimal stimming is a learning moment lost, and then you should try to keep them from stimming. And what that meant was somebody backside him every second of the day trying to prompt him to do something advisable. So it was either us or ane of his ABA tutors. They were here for three hours a day but the rest was me, and it was incredibly stressful because, start of all, he didn't want to be doing anything simply stimming, so they weren't pleasurable interactions. It was very hard to become him interested in doing anything else, and he would resist it. It was work. There was no fun involved in it. It meant, because I had read how important this was, that whatsoever moment that he was left to his ain devices to stim I had to feel guilty about it.

We were seeing very little of friends or relatives at that indicate, because it was virtually impossible to take Brian anywhere so people had to come to us, and our business firm was kind of like a state of war zone. And I just remember the times when nosotros were with other people, like at holidays, information technology was only constant stress. I either had to surrender any hope of interacting with other people and just exist on Brian doing what I'm supposed to be doing, which is stopping him from stimming, or I'm going to interact with other people and experience guilty that Brian'due south over at that place stimming. And so that was very, very stressful.

And so we were very worried about the impact of this on our other son. That was very stressful as well. By two years, information technology was completely clear that there was no danger of autism in him or actually anything else, so we shifted from worrying about whether he was going to develop autism to worrying about the impact of all of this on him. Our house was a state of war zone. It was very difficult to take the two kids anywhere together, because information technology was difficult to find a place that Brian could be safely that David might also enjoy. And that became progressively harder equally the kids got older, because fifty-fifty though David was two years younger the gap between him and Brian pretty speedily increased, and and then when they were actually young the sensory things that we could take Brian to the jumping pit or the climbing apparatus at McDonalds David liked, besides, but David out grew that stuff and Brian didn't. So, yes, it was stressful. Things take happily gotten better.

Transcript: Becky and Andy, Parents

Andy: 1 of the challenges of being the parent of a kid with special needs, it's just communication. You spend so much of your time and energy preparing for IEP meetings, advocating for your child in various situations, communicating with your teacher probably more than other parents are, trying to integrate them into other extracurricular activities wherever that may exist, managing medical appointments and therapy appointments and pharmaceutical stuff. It takes up a lot of time and energy, and so for us just not spending all of our evenings and all of our costless time on that and trying to maintain a healthy communication in our marriage, and some play time for us, and times to just get out and simply be a couple, and that's certainly a claiming. And then, every bit nosotros've had other children, now it's the challenge for us to maintain some balance betwixt our children and non just focusing all of our attention on Finn merely besides parenting our baby and giving him the time and energy that he needs as well. Those things in particular, I think, have been really difficult. Fortunately for the states, nosotros're pretty aware of that and try to be pretty diligent about non letting that overwhelm us and getting away and trying to discover some time where we tin can simply be us, too.

Becky: I think some other challenge for parents of kids with special needs is that information technology tin can tend to be somewhat isolating. I don't know if anybody completely understands the total picture of what nosotros deal with on a daily basis. And and so for a parent beingness transparent plenty with your family and with friends to let them in and let them carry the load a piffling fleck is a huge challenge because you want to wait like you have it all together. Y'all're doing the IEP meetings and doing the communication and still making time for your friends and for your spouse and for your other children, and then just being transparent enough to inquire for help when yous demand it

Andy: It'due south really hard because I think most of our natural tendencies is to just become it washed. Some of us are raised with this attitude of, you know, buck upwardly and make it piece of work and don't complain and push through, which is not healthy at all. We kind of alive in a globe similar that to where the idea is just to not bother anybody else, not trouble everyone else. That is very isolating, and many of u.s. accept struggled with that in our lives and in our situations with our children, and many of the people listening to this probably exercise, also. Then it's a great temptation to isolate, but it's a great blessing if you tin can find a way past that, to detect some people in life that you tin just tell the truth. Information technology's embarrassing sometimes; I accept a ten-year-old who still has pottying problems. Fortunately, he can arrange most of his needs, but even still there are challenges in that, and information technology's just embarrassing sometimes. It'due south really not something you desire to conversation with your friends about, specially your friends who take normal, beautiful children who are soccer stars and straight A students. That gets difficult sometimes, but if you tin can find a couple of people that you're okay to merely say, "Hey, my kid made a mess in the bathtub tonight, and that was actually difficult." It'southward really awesome to have somebody to be able to really talk about that kind of stuff with.

Research Shows

Families are connected and interdependent; what happens to i fellow member of the family can bear on the dynamics of the whole. The earlier a kid is identified as having ASD, the earlier the child and family (including the siblings) can go appropriate supports and services.

• Parents who are unaware that they accept a child with ASD might use ineffective parenting strategies, which tin make them experience frustrated and hundred-to-one of their own parenting abilities.
  (Sofronoff & Farbotko, 2002; Karst & Van Hecke, 2012)
• The parents of children with ASD frequently use maladaptive coping strategies, particularly self-blame.
  (Rodrigue, Morgan, & Geffken, 1990; Karst & Van Hecke, 2012)
• Because siblings will normally be involved in one another's lives longer than the parents, they also crave training and supports.
  (Conway & Meyer, 2008)
• Siblings often share the same feelings about their siblings with ASD as their parents may, including isolation, guilt, concerns about the futurity, and desire for more information.
  (Conway & Meyer, 2008)

Supporting Families

In one case educational professionals get familiar with the potential struggles and difficulties that families of children with ASD might encounter, they can lessen parent stress and help their children make meaningful progress through the interventions that they provide. Because interactions with school staff can be an boosted source of stress for some families, professionals should mind to them, communicate frequently, and be responsive to their concerns and input. Go along in heed that teachers should communicate nearly the kid's positive behaviors and non just well-nigh his or her challenging behaviors.

Teachers can further support families past helping them discover an appropriate support network. In that location are a number of groups or networks that offer supports and services to families of children with ASD (e.1000., Autism Support Network). Many parents express corking satisfaction when they are able to create networks with other parents with children of similar ages and abilities, and these associations often lead to lifelong friendships.

Listen as Adrienne Golden discusses the importance of caregivers and educators communicating with and providing support for families. Next, listen equally Nancy Rosenberg describes some of the supports that helped her cope with stressors she experienced.

Adrienne Golden
Susan Grey School
Early on Childhood Lead Teacher
Vanderbilt Academy

(fourth dimension: 1:56)

View Transcript

Nancy Rosenberg, PhD
Parent of a immature adult with ASD
Director of Distance Learning ABA Program
University of Washington

(fourth dimension: 2:49)

View Transcript

Transcript: Adrienne Gold, Early Childhood Teacher

I think families are a huge part of the classroom for all kids. They know their kids the best. They've spent the about fourth dimension with them. They've known them from day 1, and they can provide us a lot of insight near the child, what they like, what they don't like, how they reply to different situations, strategies that have worked in the past, or just oasis't worked in the by. Often, kids are different at home and at school, so they tin really provide united states of america a lot of insight into what the child is doing at abode or out in the community, and what's important to them, because each family has something different that's important for them and for their kid to be working on.

It'south of import to be consequent beyond different settings, and so if they're doing something at home that seems to really work, how can we brand that work in our classroom or vice versa? If nosotros're seeing something that'south really working and maybe the family unit is struggling with that, how can nosotros help them use the same strategies at domicile so the child'due south receiving the aforementioned support everywhere? Then they're getting used to, this is how I comport in all situations, or this is how I piece of work through these situations at dwelling house and at school. I try to keep an open up line of communication and gather information from them and so talk to them a lot about how well their kid is doing in the classroom. They know that their child is going to struggle with a lot of things. That's a given, and so nosotros affect that some, but I always like to focus on the positive. And, y'all know, "Oh, today, he said this discussion that he's never said before. Nosotros made eye contact at circle fourth dimension," and those kinds of things to really assist them see that their child is being successful. And and so really talking to the families nearly what's a struggle at dwelling house and how can we aid with that? Then saying, "Y'all know, nosotros were really struggling with how are we going to get your kid to stay seated at lunchtime. And that was a struggle for u.s.a., and these are some things we've tried and it's really working, and then if you're having that struggle at home, maybe you can apply some of the aforementioned strategies." And some families accept offered to brand visuals for them and those kinds of things. Just anything that we're doing at school that could aid them at domicile.

Transcript: Nancy Rosenberg, PhD

I just wanted to arrive clear that we've had so much help and support throughout the years, both at schoolhouse and in the domicile and community environs. For one matter, my hubby works at Microsoft, and we were part of a group that advocated early on when Brian was, like, 6 and seven, nosotros were pushing to get Microsoft to cover ABA therapy for kids on the autism spectrum. When my son turned eight, they started roofing it. That made such a divergence considering we were providing a lot of ABA therapy. Nosotros were getting respite in family back up from the Section of Developmental Disabilities, and I can't say how much that helped ease the stress.

And then some other matter that I always had that made such a difference, an expert friend to telephone call who could give me communication or assistance. I wasn't much of a back up-group person. I wanted to talk to an expert, and probably considering we went to the experimental didactics unit when my son was young, I was hooked up with people that really knew what they were doing. I think of then many times over Brian's childhood that I simply felt completely helpless and uncertain what to do, and I had these people I could call that could assistance.

So the terminal thing was getting knowledge, going dorsum and getting my PhD. And I'm not necessarily recommending that to everybody, only that knowledge on how to teach and aid my kid myself was the best support I could take had. I recall when I was doing ABA with my kid, people would say things, like, "Oh, I don't desire to be my child's therapist. I just want to be his female parent." Function of me understood that, but part of me was, like, "Yep, just a mother needs to be able to teach their child things, and I am learning how to teach my kid." I'm merely and then thankful for that education, because at present when a trouble comes up, and they always practice, I have the noesis and the strategies to deal with it, and that'due south the biggest support I could have had. I'chiliad non dependent on trying to find somebody else who knows how to do information technology. I know how to practice information technology myself.

wadeloicher.blogspot.com

Source: https://iris.peabody.vanderbilt.edu/module/asd1/cresource/q2/p05/

Share this post