E-Speaks eNewsletter
November is National Family Caregivers Month. This month, we honor the incredible hard work and dedication of all those who care for people with autism — family members, professionals, friends and more. Caring for loved ones on the spectrum can be challenging, and can also provide great joy and fulfillment. For those facing challenges, we are here to support you and we are so grateful for all that you do.6 things the autism community wants caregivers to know
Here's a teaser: That I'm very nice, I love to be myself, I have a good heart, I do good things and more.
6 things the autism community wants caregivers to know In honor of National Family Caregivers Month in November, we asked our Instagram community what they want a caregiver in their life to know. These are some of their answers.- That they are the strongest person I know and that I am SO proud of them!
- The small amount she helps with my son is so much bigger to me than she will ever realize.
- My family helps me and they support me because I am autistic.
- How much they have changed our lives in a positive way.
- Our community is very tight knit and it's great to learn from each other.That I'm very nice, I love to be myself, I have a good heart, I do good things and more.
- Caring for the caregiver
Caring for the caregiver
Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself. Here are some tips from parents. Read MoreCaring for the Caregiver100 Day Kit for Newly Diagnosed FamiliesChanging the course of the life of your child with autism can be a very rewarding experience. You are making an enormous difference in his or her life. To make it happen, you need to take care of yourself. Take a moment to answer these questions: Where does your support and strength come from? How are you really doing? Do you need to cry? Complain? Scream? Would you like some help but don’t know who to ask?
Remember that if you want to take the best possible care of your child, you must first take the best possible care of yourself.
Parents often fail to evaluate their own sources of strength, coping skills or emotional attitudes. You may be so busy meeting the needs of your child that you don’t allow yourself time to relax, cry or simply think. You may wait until you are so exhausted or stressed out that you can barely carry on before you consider your own needs. Reaching this point is not helping you or your family. You may feel that your child needs you right now, more than ever. Your “to do” list may be what is driving you forward right now. You may feel completely overwhelmed and not know where to start.
There is no single way to cope. Each family is unique and deals with stressful situations differently. Getting your child started in treatment will help you feel better. Acknowledging the emotional impact of autism and taking care of yourself during this stressful period will help prepare you for the challenges ahead. Autism is a pervasive, multi-faceted disorder. It will not only change the way that you look at your child, it will change the way you look at the world. Maintaining open and honest communication with your partner and family as well as discussing your fears and concerns will help you to deal with the many changes in your life. As some parents may tell you, you may be a better person for it.
The love and hope that you have for your child make you stronger than you realize.
Here are some tips from parents who have experienced what you are going through:
Get going.
Getting your child started in treatment will help. There are many details you will be managing in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you will be more able to focus on moving forward. It may also free up some of your time so you can educate yourself, advocate for your child and take care of yourself.
Ask for help.Asking for help can be very difficult, especially at first. Don’t hesitate to use whatever support is available to you. People around you may want to help, but may not know how. Is there someone who can take your other kids somewhere for an afternoon? Or cook dinner for your family one night so that you can spend the time learning? Can someone pick a few things up for you at the store or do a load of laundry? Or let other people know you are going through a difficult time and could use a hand?
Talk to someone.Everyone needs someone to talk to. Let someone know what you are going through and how you feel. Someone who just listens can be a great source of strength. If you can’t get out of the house, use the phone to call a friend.
Consider joining a support group.
It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources of information about what services are available in your area and who provides them. You may have to try more than one to find a group that feels right to you. You may find you aren’t a “support group kind of person.” For many parents in your situation, support groups provide valuable hope, comfort and encouragement.
You may also want to consider attending a recreational program for children with autism. This may be a good way to meet other parents just like you.
One study from Vanderbilt University, a part of the Autism Speaks Autism Treatment Network, found that mothers of children with autism benefit significantly from weekly stress-reduction classes led by other mothers. The classes reduced previously high levels of personal stress, anxiety and depression and improved the mom’s interactions with their children.
You may find a listing of support groups in the Autism Speaks Resource Guide at autismspeaks.org/resource-guide. Another avenue is through the local SETA (Special Education Parent Teacher Association) in your school district or online through the Autism Speaks Facebook page at facebook.com/autismspeaks. M y Autism Team, the social network for parents of kid s with autism, is another great resource. n this site parents of children with autism share their experiences including their reviews of local service providers, to help inform the parents in their communities. Visit the site at myautismteam.com.
Try to take a break.
If you can, allow yourself to take some time away, even if it is only a few minutes to take a walk. If it’s possible, getting out to a movie, going shopping or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that this break will help you feel renewed for the things you need to do when you get back. Try to get some rest. If you are getting regular sleep, you will be better prepared to make good decisions, be more patient with your child and more able to deal with the stress in your life.
Consider keeping a journal.
Louise DeSalvo, in Writing as a Way of Healing , notes that studies have shown that: “ Writing that describes traumatic events and our deepest thoughts and feelings about them is linked with improved immune function, improved emotional and physical health, and positive behavioral changes.” Some parents have found a journal to be a helpful tool for keeping track of their child’s progress, what is working and what isn’t. Be mindful of the time you spend on the internet. The internet will be one of the most important tools you have for learning what you need to know about autism and how to help your child.
Unfortunately, there is more information on the web than any of us have time to read in a lifetime. There may also be a lot of misinformation.
As a parent, always remember to trust your gut.There are many paths to take, treatment options and opinions. You know your child best. Work with your child’s treatment team to find what works best for your child and your family. Right now, while you are trying to make the most of every minute, keep an eye on the clock and frequently ask yourself these important questions: Is what I’m reading right now very likely to be relevant to my child? Is it new information? Is it helpful? Is it from a reliable source?
Sometimes, the time you spend on the internet will be incredibly valuable. Other times, it may be better for you and your child if you use that time to take care of yourself. The internet will be one of the most important tools you have for learning what you need to know about autism and how to help your child.
Read more about supporting your child after an autism diagnosis in the Autism Speaks 100 Day Kit for Newly Diagnosed Families of Young Children or School Age Children.Read More
Dear future caregiver of my son with autism
"I want you to know I hope he's good for you, and I wish you patience when he's not. I want you to know that his primary emotion is joy, and if he's having a meltdown or a crabby day (who doesn't) he will eventually return to his happy place. Yup, I promise."
Help enhance lives today and accelerate a spectrum of solutions for tomorrow.
Dear future caregiver of my son with autism
August 24, 2017
This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum. Kim also has a blog about her family.Dear caregiver to Justin,
If you’re reading this letter (and I so hope you are) it means I’ve never met you and never will, as I’ve gone kicking and screaming to the Great Beyond (wherever that may be). If you’re perusing this after I’ve just passed I’m sure your co-workers can tell you about me, as I was a staple at your group home, hopefully a help with my homemade chocolate chip cookies and my jambalaya (the only two things I make well) and my frequent visits to check up on my boy.
If you’re reading this thirty years after I’ve gone, I’ll have to believe my legend died with me.
I left explicit instructions to your predecessors about Justin’s lifetime care, hoped with all my heart they’d be honored, and at the very least that all those who care for him will read this missive from me.
It’s good to have hope.
You see, whether Justin’s fifty now or ninety-nine (it’s possible, his relatives have lived ridiculously long lives) I know you see before you a severely autistic man, predominantly non-verbal, with either OCD or just a really strong penchant for perseveration on the side (I gave up caring which it was during the Obama administration). He is fairly tall as was his father, and although now his hair is streaked with gray during his younger days it was a dark blond, like his mother’s before she got to the salon. The last time I saw him he still had a dimple on his left cheek, and his smile is transcendent, no matter what his age.
I know. It only took me four paragraphs to brag.
I want you to know although I love my son passionately I don’t have blinders on where he is concerned. Just so you know a little bit about me I used to teach before I had my kids, and nothing renders you more objective where children are concerned than a stint in the classroom. Justin is kind, and sometimes playful, and generally happy with his life. He is also stubborn, hyperfocused on getting his wants (not necessarily his needs) met, and his OCD (or whatever the hell it is) can drive a person to drink the good stuff.
See, I can be objective.
I want you to know that I am confident at times his care will drive you crazy. It may be that sixtieth pretzel he wants, or a DVD that just doesn’t work anymore that he insists on playing. He may want to leave after half an hour from the extremely fun place all his co-habitors are loving (which got you out of the group home for the day), and there may be no convincing him that a water park in August is more fun than his own living room.
Hell, you may be struggling just to get him out of the house.
Please know whatever manifestations of difficult you see, it wasn’t that his father, myself, and a thousand professionals didn’t try to ameliorate them. Back in the good old days of his toddlerhood (not really so great even with a half century of perspective) I girded my loins and took that kid places, with the half moons of his little teeth marks bearing witness to my pilgrimages. Sometimes I could barely get him in his car seat, but stubbornness like autism is hereditary (yes it is!) and I persisted so someone who weighed less than my right thigh (it’s the bigger one) wouldn’t keep me prisoner in my own house.
I have my limits.
I want you to know we tried. We finally got him to crave sleep (that one took a few years, yes you can thank me now), to eat things that weren’t carbs including two veggies (that one’s going on my tombstone, I am still so proud), to learn how to dial back some of the innate aggression that occurred when he didn’t get his way. We taught him to use a fork (okay, sometimes) and to understand that leaving the house is often fun, and should last more than thirty-seven minutes. I encouraged him to go on errands with me and not try to purchase everything he saw (just a heads-up, that will not work at Walmart or Toys R’ Us, be warned).
My boy has his limits too.
I want you to know I hope he’s good for you, and I wish you patience when he’s not. I want you to know that his primary emotion is joy, and if he’s having a meltdown or a crabby day (who doesn’t) he will eventually return to his happy place.
Yup, I promise.
I also want you to know how many people loved him - family members, our friends, his teachers and therapists. I scrapbooked his entire childhood (almost as therapeutic as wine) and if you have a few minutes, please peruse his life. You will see pictures (and I’m being objective again) of a beautiful baby, a sweet toddler, a handsome teen. You will see photos of an increasingly aging and tired-looking blond chick (who was cute once too) who in most photos is holding him or his hand, and smiling.
I want you to know that smile was genuine, no matter what had just transpired or what challenges we were about to face. I loved him, with all his difficulties, his perseverations, his intransigence. He loved me back, with his daily kisses for no reason, the ten minutes we cuddled each morning before I could get him out of bed, his hugs as I read him his Eric Carle stories nightly even at age twenty-one.
I want to thank you for whatever period of time your paths cross, for your perserverance, and I let myself hope, your kindness toward my boy.
So please, when you’re frustrated with him and thinking you’re just not paid enough for this (and you’re not), please know this. Take it to heart. Remember this, for him and for me.
We “got” each other.
He was my greatest challenge, my soul, my aching heart, my joy.
I loved him.Read More
National Family Caregiving Advisory Council is formed to develop nationwide strategy
The RAISE Family Caregivers Act that passed in January 2018 requires the development of a national family caregiving strategy. The Department of Health and Human Services is currently accepting nominees for the Advisory Council which will help develop this strategy.
HHS seeks nominees for National Family Caregiving Advisory Council
The Department of Health and Human Services (HHS) is currently asking for nominees to the National Family Caregiving Advisory Council.
The Family Caregiving Advisory Council is a result of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act which was signed into law in January.
Autism Speaks helped pass this legislation to ensure that the millions of family caregivers supporting individuals with autism have access to the resources they need.
The National Family Caregiving Advisory Council will help HHS in the development of a national family caregiving strategy.
The Advisory Council will include the Administrator of the Centers for Medicare & Medicaid, Administrator of the Administration for Community Living, Secretary of Veterans Affairs, and potentially additional heads of other federal departments or agencies.
It will also include 15 voting members, with at least one from each of the following constituencies:
- Family caregivers
- Older adults who need long-term services and supports
- Individuals with disabilities
- Health care and social service providers
- Providers of long-term services and supports
- Employers
- Paraprofessional workers
- State and local officials
- Accreditation bodies
- Veterans
Federally funded efforts to recognize and support family caregivers.
Improving coordination of federal programs and activities to support family caregivers.
How family caregiving impacts Medicare, Medicaid, and other federal programs.
Ways to address the financial, health, and other challenges faced by family caregivers.
Evidence-based and innovative models for the provision of care by family caregivers or support for family caregivers.
To nominate yourself or another qualified individual for membership, submit your complete nomination packet according to the instructions in the federal register.
Nominations must be submitted by December 3, 2018 Read More
Autism Caregiver Skills Training: Helping families at home and abroad
The World Health Organization Caregivers Skills Training — developed in collaboration with Autism Speaks — is a practical and culturally adaptable training program to foster the social and communication skills of children with autism and other developmental issues, with a special focus on families in underserved communities.The World Health Organization Caregivers Skills Training – developed in collaboration with Autism Speaks – is a practical and culturally adaptable training program to foster the social and communication skills of children with autism and other developmental issues, with a special focus on families in underserved communities.
The program aligns with Autism Speaks’ mission to increase understanding and acceptance of autism, increase early-childhood screening and intervention and ensure access to reliable information and service throughout life.
The program trains Master Trainers and Facilitators, who in turn train parents and other caregivers to use scientifically proven strategies for promoting child development, reducing disruptive behaviors and strengthening their own coping skills.
Last year, Autism Speaks and WHO began the global rollout of Parent Skills Training with Master Trainer workshops and pilot programs in the Philippines, South Korea and South America. The year also brought commitments from more than 20 governments to implement the program.
In 2017, Caregiver Skills Training debuted in the United States, with a Master Trainer workshop to train specialists who will pilot the program in two predominantly Latino and African American neighborhoods in Newark, New Jersey. Based on the results and refinements of this and other pilot studys around the world, Autism Speaks will help roll out programs nationally as well as abroad. (Stay tuned to this column for updates.)
We sat down with Lucia Murillo, Autism Speaks’ assistant director of education research, to discuss the program’s early successes and challenges and its promise to advance the organization’s mission to “enhance lives today and accelerating a spectrum of solutions for tomorrow.”
What was the inspiration behind the development of the Caregiver Skills Training program?
In our international work, it started from what we heard from parents and other caregivers in the countries we visited. Many of these parents went to great lengths and expense to get their children evaluated. But a diagnosis of autism didn’t necessarily lead to services or even information about the condition. For instance, on a trip to Albania, I heard from parents, teachers and healthcare professionals about how they didn’t know what to do to help a child diagnosed with autism. “We don’t have the skills. We don’t have support,” they told me. We’ve heard these concerns in many parts of the world. Professional behavioral therapy isn’t available to all – or even most – families in many countries.
In that kind of setting, Caregiver Skills Training is an intervention that parents and other caregivers can use to help their children when professional services are lacking. The strategies give parents skills that improve how they interact with their children and deal with challenging behaviors. The goal is for the parents to help foster their children’s communication and, when possible, their language skills. The emphasis is on skills that the parents and their children can use daily as they participate in activities at home, school and play.
One of the most important aspects of our pilot testing is to gauge how feasible it is to adapt this program to different communities and cultures around the world – including here at home.
What kind of expertise do you and your local partner organizations look for in a Master Trainer?
In general, our Master Trainers have some specialized training in child development that includes autism or related developmental delays or disabilities. In some countries, our Master Trainers include child psychologists, special education teachers, speech therapists and developmental pediatricians. In Newark, we trained three members of the Mom2Mom team. They’re not only parents of children with autism. They’re clinicians with backgrounds in behavioral intervention and training as peer mentors who provide support to families who call their help line. In addition, we trained two members of the Newark school district’s special education team and a social worker with Rutgers University Behavioral HealthCare.
How does the training provided to Master Trainers ultimately reach parents and other caregivers?
In many of the countries where we work, the Master Trainers have a lot of ground to cover. So the Master Trainers train non-specialists we call Facilitators. The Facilitators go back to their local communities to conduct group programs and visit individual homes to share the strategies with parents free of charge. Many of our facilitators are teachers, social workers, nurses and other community workers. They also include parents who are taking a leadership role in the autism community in their region.
However, we have no strict parameters for who is a Master Trainer or who is a Facilitator. Flexibility is key to adapting the Parent Skills Training program work in different communities and cultures at home and around the world.
What does the Caregiver Skills Training program bring to families in countries like ours where we have professional services?
This program was developed with the needs of underserved communities in mind, and these underserved communities exist here at home as well as abroad. We know, for example, that there are long waiting lists for services in many large metropolitan areas, and many people who live in rural areas have to drive long distances to get specialized care for their children. Even when their children are enrolled in therapy programs, parents may feel, rightly, that the services fall short of what their children need.
So in this country as in other high-income countries, Parent Skills Training is not meant to take the place of specialized services. Instead, it’s a way to supplement professional services and/or fill gaps while children are on waiting lists for these services.
The opportunity to launch our first U.S. workshop and evaluation study came through a grant from the Healthcare Foundation of New Jersey, in collaboration with our partners Mom2Mom of New Jersey. Mom2Mom is a program of Rutgers University Behavioral HealthCare. Its staff and volunteers operate a free, confidential, peer counseling helpline for mothers of children with special needs including autism.
We held our New Jersey Master Trainer workshop in January. The Master Trainers will soon be sharing what they learned with parents and teachers in two predominantly Latino and African American communities in Newark. As part of our study, we’ll be evaluating how well the program works in this new setting.
What are the plans for the Caregiver Skills Training program in Newark?
Two of our Mom2Mom Master Trainers will conduct a pre-pilot study that will evaluate how well the Caregiver Skills Training program works in Newark and how we might improve it. In preparation, they will take the strategies they learned in the workshop and practice them with an initial group of eight to ten families. They’ll be videotaping these sessions and sending them to us and our WHO collaborators. We’ll be able to review the video tapes and provide feedback on how they’re applying and sharing the strategies. This will also allow us to identify unanticipated challenges in adapting the program to best serve this community.
Once we’ve reviewed and provided feedback, the Mom2Mom team will invite a second group of eight to ten families to receive the training. During the program, the Master Trainers will make three home visits with each family and nine group sessions over three months. In selecting the families, they will invite those who have children between the ages of 2 and 9 who have a diagnosis of autism or another developmental disability or delay such as Down syndrome.
The program will be offered to families free of charge, which is our goal in all the countries where we work.
Please describe an example of a Caregiver Skills Training strategy designed to foster communication in a child?
We continue to revise and adapt the strategies we use in the program. That said, many of them focus on giving caregivers foundational skills and basic knowledge that will help them interact with their children in ways that foster the development of social and communication skills. As part of this, we discuss the different ways children communicate and the importance of speaking at the child’s developmental level.
For example, let’s say a child’s language skills are limited to one-word utterances. We teach the families to expand on this by repeating the word back to the child as part of a two-word phrase. So if the child says “juice,” the parent might reply “apple juice.” Similarly, we encourage play-based learning. For example, if the parent and child are building a block tower together, the child might say “block” when it’s his turn to place a block. The parent would encourage this by expanding on what the child said by saying “red block” when she places her block. In these ways, the parent focuses on responding to the child at his or her developmental level while encouraging social interaction.
Most of our communication strategies focus on following the child’s lead. When we respond and imitate what they say or do, the children see that we heard them and are paying attention. This is different from approaches where adults guide the interaction and ask the child to say something. Instead, we focus on giving the child the time to initiate communication without prompts, which is a more natural social interaction.
Please describe an example of a Caregiver Skills Training strategy designed to help a parent or other caregiver cope with the challenges of supporting a special-needs child?
We know that it’s important for parents and other caregivers to take care of themselves. It’s the familiar airline analogy of putting on your oxygen mask before helping others. So our program gives caregivers tools to help them deal with the stress of taking care of a child with a disability. One way we do this is by incorporating a three- to five-minute wellness and calming activity at the start of every group session. This is similar to a guided meditation, with the caregiver taking slow, deep breaths and silently repeating a calming word such as “relax” or “peace.” We want to encourage parents and other caregivers to practice these self-care strategies at home when they feel their stress levels rising. They are brief enough to be manageable for a busy family.
We also describe a series of steps that parents can use to help problem solve a situation. This includes considering the nature of the problem, listing possible solutions and weighing the pros and cons of each before trying them out.
All these self-care strategies recognize that caregivers feel overwhelmed sometimes. We want them to feel like they have tools to make parenting more manageable. Read More
Dear future caregiver of my son with autism
"I want you to know I hope he's good for you, and I wish you patience when he's not. I want you to know that his primary emotion is joy, and if he's having a meltdown or a crabby day (who doesn't) he will eventually return to his happy place. Yup, I promise."
Help enhance lives today and accelerate a spectrum of solutions for tomorrow.
Dear future caregiver of my son with autism
August 24, 2017
This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum. Kim also has a blog about her family.Dear caregiver to Justin,
If you’re reading this letter (and I so hope you are) it means I’ve never met you and never will, as I’ve gone kicking and screaming to the Great Beyond (wherever that may be). If you’re perusing this after I’ve just passed I’m sure your co-workers can tell you about me, as I was a staple at your group home, hopefully a help with my homemade chocolate chip cookies and my jambalaya (the only two things I make well) and my frequent visits to check up on my boy.
If you’re reading this thirty years after I’ve gone, I’ll have to believe my legend died with me.
I left explicit instructions to your predecessors about Justin’s lifetime care, hoped with all my heart they’d be honored, and at the very least that all those who care for him will read this missive from me.
It’s good to have hope.
You see, whether Justin’s fifty now or ninety-nine (it’s possible, his relatives have lived ridiculously long lives) I know you see before you a severely autistic man, predominantly non-verbal, with either OCD or just a really strong penchant for perseveration on the side (I gave up caring which it was during the Obama administration). He is fairly tall as was his father, and although now his hair is streaked with gray during his younger days it was a dark blond, like his mother’s before she got to the salon. The last time I saw him he still had a dimple on his left cheek, and his smile is transcendent, no matter what his age.
I know. It only took me four paragraphs to brag.
I want you to know although I love my son passionately I don’t have blinders on where he is concerned. Just so you know a little bit about me I used to teach before I had my kids, and nothing renders you more objective where children are concerned than a stint in the classroom. Justin is kind, and sometimes playful, and generally happy with his life. He is also stubborn, hyperfocused on getting his wants (not necessarily his needs) met, and his OCD (or whatever the hell it is) can drive a person to drink the good stuff.
See, I can be objective.
I want you to know that I am confident at times his care will drive you crazy. It may be that sixtieth pretzel he wants, or a DVD that just doesn’t work anymore that he insists on playing. He may want to leave after half an hour from the extremely fun place all his co-habitors are loving (which got you out of the group home for the day), and there may be no convincing him that a water park in August is more fun than his own living room.
Hell, you may be struggling just to get him out of the house.
Please know whatever manifestations of difficult you see, it wasn’t that his father, myself, and a thousand professionals didn’t try to ameliorate them. Back in the good old days of his toddlerhood (not really so great even with a half century of perspective) I girded my loins and took that kid places, with the half moons of his little teeth marks bearing witness to my pilgrimages. Sometimes I could barely get him in his car seat, but stubbornness like autism is hereditary (yes it is!) and I persisted so someone who weighed less than my right thigh (it’s the bigger one) wouldn’t keep me prisoner in my own house.
I have my limits.
I want you to know we tried. We finally got him to crave sleep (that one took a few years, yes you can thank me now), to eat things that weren’t carbs including two veggies (that one’s going on my tombstone, I am still so proud), to learn how to dial back some of the innate aggression that occurred when he didn’t get his way. We taught him to use a fork (okay, sometimes) and to understand that leaving the house is often fun, and should last more than thirty-seven minutes. I encouraged him to go on errands with me and not try to purchase everything he saw (just a heads-up, that will not work at Walmart or Toys R’ Us, be warned).
My boy has his limits too.
I want you to know I hope he’s good for you, and I wish you patience when he’s not. I want you to know that his primary emotion is joy, and if he’s having a meltdown or a crabby day (who doesn’t) he will eventually return to his happy place.
Yup, I promise.
I also want you to know how many people loved him - family members, our friends, his teachers and therapists. I scrapbooked his entire childhood (almost as therapeutic as wine) and if you have a few minutes, please peruse his life. You will see pictures (and I’m being objective again) of a beautiful baby, a sweet toddler, a handsome teen. You will see photos of an increasingly aging and tired-looking blond chick (who was cute once too) who in most photos is holding him or his hand, and smiling.
I want you to know that smile was genuine, no matter what had just transpired or what challenges we were about to face. I loved him, with all his difficulties, his perseverations, his intransigence. He loved me back, with his daily kisses for no reason, the ten minutes we cuddled each morning before I could get him out of bed, his hugs as I read him his Eric Carle stories nightly even at age twenty-one.
I want to thank you for whatever period of time your paths cross, for your perserverance, and I let myself hope, your kindness toward my boy.
So please, when you’re frustrated with him and thinking you’re just not paid enough for this (and you’re not), please know this. Take it to heart. Remember this, for him and for me.
We “got” each other.
He was my greatest challenge, my soul, my aching heart, my joy.
I loved him.Read More
National Family Caregiving Advisory Council is formed to develop nationwide strategy
The RAISE Family Caregivers Act that passed in January 2018 requires the development of a national family caregiving strategy. The Department of Health and Human Services is currently accepting nominees for the Advisory Council which will help develop this strategy.
HHS seeks nominees for National Family Caregiving Advisory Council
The Department of Health and Human Services (HHS) is currently asking for nominees to the National Family Caregiving Advisory Council.
The Family Caregiving Advisory Council is a result of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act which was signed into law in January.
Autism Speaks helped pass this legislation to ensure that the millions of family caregivers supporting individuals with autism have access to the resources they need.
The National Family Caregiving Advisory Council will help HHS in the development of a national family caregiving strategy.
The Advisory Council will include the Administrator of the Centers for Medicare & Medicaid, Administrator of the Administration for Community Living, Secretary of Veterans Affairs, and potentially additional heads of other federal departments or agencies.
It will also include 15 voting members, with at least one from each of the following constituencies:
Federally funded efforts to recognize and support family caregivers.
Improving coordination of federal programs and activities to support family caregivers.
How family caregiving impacts Medicare, Medicaid, and other federal programs.
Ways to address the financial, health, and other challenges faced by family caregivers.
Evidence-based and innovative models for the provision of care by family caregivers or support for family caregivers.
To nominate yourself or another qualified individual for membership, submit your complete nomination packet according to the instructions in the federal register.
Nominations must be submitted by December 3, 2018 Read More
Autism Caregiver Skills Training: Helping families at home and abroad
The World Health Organization Caregivers Skills Training — developed in collaboration with Autism Speaks — is a practical and culturally adaptable training program to foster the social and communication skills of children with autism and other developmental issues, with a special focus on families in underserved communities.The World Health Organization Caregivers Skills Training – developed in collaboration with Autism Speaks – is a practical and culturally adaptable training program to foster the social and communication skills of children with autism and other developmental issues, with a special focus on families in underserved communities.
The program aligns with Autism Speaks’ mission to increase understanding and acceptance of autism, increase early-childhood screening and intervention and ensure access to reliable information and service throughout life.
The program trains Master Trainers and Facilitators, who in turn train parents and other caregivers to use scientifically proven strategies for promoting child development, reducing disruptive behaviors and strengthening their own coping skills.
Last year, Autism Speaks and WHO began the global rollout of Parent Skills Training with Master Trainer workshops and pilot programs in the Philippines, South Korea and South America. The year also brought commitments from more than 20 governments to implement the program.
In 2017, Caregiver Skills Training debuted in the United States, with a Master Trainer workshop to train specialists who will pilot the program in two predominantly Latino and African American neighborhoods in Newark, New Jersey. Based on the results and refinements of this and other pilot studys around the world, Autism Speaks will help roll out programs nationally as well as abroad. (Stay tuned to this column for updates.)
Many primary caregivers of children and adults with autism are family members. We developed tools to help parents, grandparents, siblings and friends of people with autism understand more about autism and learn to best support their loved ones on the spectrum.
A Parent's Guide to Autism
If your child has recently been diagnosed with an autism spectrum disorder, you have come to the right place.
A Parent’s Guide to Autism was developed as part of Autism Speaks’ series of Family Support Tool Kits to support you and promote a positive future for your child and family during an often challenging time.
You are not alone in this journey and this guide is a step toward finding the help you need to travel the road to optimal outcomes for you, your child and your family.
Sections include:
Trending on social
"Trending on social" highlights one of the many heartwarming images shared with us by the autism community on our social channels. You can find this photo and many others by following us on Instagram. See More
What was the inspiration behind the development of the Caregiver Skills Training program?
In our international work, it started from what we heard from parents and other caregivers in the countries we visited. Many of these parents went to great lengths and expense to get their children evaluated. But a diagnosis of autism didn’t necessarily lead to services or even information about the condition. For instance, on a trip to Albania, I heard from parents, teachers and healthcare professionals about how they didn’t know what to do to help a child diagnosed with autism. “We don’t have the skills. We don’t have support,” they told me. We’ve heard these concerns in many parts of the world. Professional behavioral therapy isn’t available to all – or even most – families in many countries.
In that kind of setting, Caregiver Skills Training is an intervention that parents and other caregivers can use to help their children when professional services are lacking. The strategies give parents skills that improve how they interact with their children and deal with challenging behaviors. The goal is for the parents to help foster their children’s communication and, when possible, their language skills. The emphasis is on skills that the parents and their children can use daily as they participate in activities at home, school and play.
One of the most important aspects of our pilot testing is to gauge how feasible it is to adapt this program to different communities and cultures around the world – including here at home.
What kind of expertise do you and your local partner organizations look for in a Master Trainer?
In general, our Master Trainers have some specialized training in child development that includes autism or related developmental delays or disabilities. In some countries, our Master Trainers include child psychologists, special education teachers, speech therapists and developmental pediatricians. In Newark, we trained three members of the Mom2Mom team. They’re not only parents of children with autism. They’re clinicians with backgrounds in behavioral intervention and training as peer mentors who provide support to families who call their help line. In addition, we trained two members of the Newark school district’s special education team and a social worker with Rutgers University Behavioral HealthCare.
How does the training provided to Master Trainers ultimately reach parents and other caregivers?
In many of the countries where we work, the Master Trainers have a lot of ground to cover. So the Master Trainers train non-specialists we call Facilitators. The Facilitators go back to their local communities to conduct group programs and visit individual homes to share the strategies with parents free of charge. Many of our facilitators are teachers, social workers, nurses and other community workers. They also include parents who are taking a leadership role in the autism community in their region.
However, we have no strict parameters for who is a Master Trainer or who is a Facilitator. Flexibility is key to adapting the Parent Skills Training program work in different communities and cultures at home and around the world.
What does the Caregiver Skills Training program bring to families in countries like ours where we have professional services?
This program was developed with the needs of underserved communities in mind, and these underserved communities exist here at home as well as abroad. We know, for example, that there are long waiting lists for services in many large metropolitan areas, and many people who live in rural areas have to drive long distances to get specialized care for their children. Even when their children are enrolled in therapy programs, parents may feel, rightly, that the services fall short of what their children need.
So in this country as in other high-income countries, Parent Skills Training is not meant to take the place of specialized services. Instead, it’s a way to supplement professional services and/or fill gaps while children are on waiting lists for these services.
The opportunity to launch our first U.S. workshop and evaluation study came through a grant from the Healthcare Foundation of New Jersey, in collaboration with our partners Mom2Mom of New Jersey. Mom2Mom is a program of Rutgers University Behavioral HealthCare. Its staff and volunteers operate a free, confidential, peer counseling helpline for mothers of children with special needs including autism.
We held our New Jersey Master Trainer workshop in January. The Master Trainers will soon be sharing what they learned with parents and teachers in two predominantly Latino and African American communities in Newark. As part of our study, we’ll be evaluating how well the program works in this new setting.
What are the plans for the Caregiver Skills Training program in Newark?
Two of our Mom2Mom Master Trainers will conduct a pre-pilot study that will evaluate how well the Caregiver Skills Training program works in Newark and how we might improve it. In preparation, they will take the strategies they learned in the workshop and practice them with an initial group of eight to ten families. They’ll be videotaping these sessions and sending them to us and our WHO collaborators. We’ll be able to review the video tapes and provide feedback on how they’re applying and sharing the strategies. This will also allow us to identify unanticipated challenges in adapting the program to best serve this community.
Once we’ve reviewed and provided feedback, the Mom2Mom team will invite a second group of eight to ten families to receive the training. During the program, the Master Trainers will make three home visits with each family and nine group sessions over three months. In selecting the families, they will invite those who have children between the ages of 2 and 9 who have a diagnosis of autism or another developmental disability or delay such as Down syndrome.
The program will be offered to families free of charge, which is our goal in all the countries where we work.
Please describe an example of a Caregiver Skills Training strategy designed to foster communication in a child?
We continue to revise and adapt the strategies we use in the program. That said, many of them focus on giving caregivers foundational skills and basic knowledge that will help them interact with their children in ways that foster the development of social and communication skills. As part of this, we discuss the different ways children communicate and the importance of speaking at the child’s developmental level.
For example, let’s say a child’s language skills are limited to one-word utterances. We teach the families to expand on this by repeating the word back to the child as part of a two-word phrase. So if the child says “juice,” the parent might reply “apple juice.” Similarly, we encourage play-based learning. For example, if the parent and child are building a block tower together, the child might say “block” when it’s his turn to place a block. The parent would encourage this by expanding on what the child said by saying “red block” when she places her block. In these ways, the parent focuses on responding to the child at his or her developmental level while encouraging social interaction.
Most of our communication strategies focus on following the child’s lead. When we respond and imitate what they say or do, the children see that we heard them and are paying attention. This is different from approaches where adults guide the interaction and ask the child to say something. Instead, we focus on giving the child the time to initiate communication without prompts, which is a more natural social interaction.
Please describe an example of a Caregiver Skills Training strategy designed to help a parent or other caregiver cope with the challenges of supporting a special-needs child?
We know that it’s important for parents and other caregivers to take care of themselves. It’s the familiar airline analogy of putting on your oxygen mask before helping others. So our program gives caregivers tools to help them deal with the stress of taking care of a child with a disability. One way we do this is by incorporating a three- to five-minute wellness and calming activity at the start of every group session. This is similar to a guided meditation, with the caregiver taking slow, deep breaths and silently repeating a calming word such as “relax” or “peace.” We want to encourage parents and other caregivers to practice these self-care strategies at home when they feel their stress levels rising. They are brief enough to be manageable for a busy family.
We also describe a series of steps that parents can use to help problem solve a situation. This includes considering the nature of the problem, listing possible solutions and weighing the pros and cons of each before trying them out.
All these self-care strategies recognize that caregivers feel overwhelmed sometimes. We want them to feel like they have tools to make parenting more manageable. Read More
Dear future caregiver of my son with autism
"I want you to know I hope he's good for you, and I wish you patience when he's not. I want you to know that his primary emotion is joy, and if he's having a meltdown or a crabby day (who doesn't) he will eventually return to his happy place. Yup, I promise."Help enhance lives today and accelerate a spectrum of solutions for tomorrow.
Dear future caregiver of my son with autism
August 24, 2017
This is a post by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum. Kim also has a blog about her family.Dear caregiver to Justin,
If you’re reading this letter (and I so hope you are) it means I’ve never met you and never will, as I’ve gone kicking and screaming to the Great Beyond (wherever that may be). If you’re perusing this after I’ve just passed I’m sure your co-workers can tell you about me, as I was a staple at your group home, hopefully a help with my homemade chocolate chip cookies and my jambalaya (the only two things I make well) and my frequent visits to check up on my boy.
If you’re reading this thirty years after I’ve gone, I’ll have to believe my legend died with me.
I left explicit instructions to your predecessors about Justin’s lifetime care, hoped with all my heart they’d be honored, and at the very least that all those who care for him will read this missive from me.
It’s good to have hope.
You see, whether Justin’s fifty now or ninety-nine (it’s possible, his relatives have lived ridiculously long lives) I know you see before you a severely autistic man, predominantly non-verbal, with either OCD or just a really strong penchant for perseveration on the side (I gave up caring which it was during the Obama administration). He is fairly tall as was his father, and although now his hair is streaked with gray during his younger days it was a dark blond, like his mother’s before she got to the salon. The last time I saw him he still had a dimple on his left cheek, and his smile is transcendent, no matter what his age.
I know. It only took me four paragraphs to brag.
I want you to know although I love my son passionately I don’t have blinders on where he is concerned. Just so you know a little bit about me I used to teach before I had my kids, and nothing renders you more objective where children are concerned than a stint in the classroom. Justin is kind, and sometimes playful, and generally happy with his life. He is also stubborn, hyperfocused on getting his wants (not necessarily his needs) met, and his OCD (or whatever the hell it is) can drive a person to drink the good stuff.
See, I can be objective.
I want you to know that I am confident at times his care will drive you crazy. It may be that sixtieth pretzel he wants, or a DVD that just doesn’t work anymore that he insists on playing. He may want to leave after half an hour from the extremely fun place all his co-habitors are loving (which got you out of the group home for the day), and there may be no convincing him that a water park in August is more fun than his own living room.
Hell, you may be struggling just to get him out of the house.
Please know whatever manifestations of difficult you see, it wasn’t that his father, myself, and a thousand professionals didn’t try to ameliorate them. Back in the good old days of his toddlerhood (not really so great even with a half century of perspective) I girded my loins and took that kid places, with the half moons of his little teeth marks bearing witness to my pilgrimages. Sometimes I could barely get him in his car seat, but stubbornness like autism is hereditary (yes it is!) and I persisted so someone who weighed less than my right thigh (it’s the bigger one) wouldn’t keep me prisoner in my own house.
I have my limits.
I want you to know we tried. We finally got him to crave sleep (that one took a few years, yes you can thank me now), to eat things that weren’t carbs including two veggies (that one’s going on my tombstone, I am still so proud), to learn how to dial back some of the innate aggression that occurred when he didn’t get his way. We taught him to use a fork (okay, sometimes) and to understand that leaving the house is often fun, and should last more than thirty-seven minutes. I encouraged him to go on errands with me and not try to purchase everything he saw (just a heads-up, that will not work at Walmart or Toys R’ Us, be warned).
My boy has his limits too.
I want you to know I hope he’s good for you, and I wish you patience when he’s not. I want you to know that his primary emotion is joy, and if he’s having a meltdown or a crabby day (who doesn’t) he will eventually return to his happy place.
Yup, I promise.
I also want you to know how many people loved him - family members, our friends, his teachers and therapists. I scrapbooked his entire childhood (almost as therapeutic as wine) and if you have a few minutes, please peruse his life. You will see pictures (and I’m being objective again) of a beautiful baby, a sweet toddler, a handsome teen. You will see photos of an increasingly aging and tired-looking blond chick (who was cute once too) who in most photos is holding him or his hand, and smiling.
I want you to know that smile was genuine, no matter what had just transpired or what challenges we were about to face. I loved him, with all his difficulties, his perseverations, his intransigence. He loved me back, with his daily kisses for no reason, the ten minutes we cuddled each morning before I could get him out of bed, his hugs as I read him his Eric Carle stories nightly even at age twenty-one.
I want to thank you for whatever period of time your paths cross, for your perserverance, and I let myself hope, your kindness toward my boy.
So please, when you’re frustrated with him and thinking you’re just not paid enough for this (and you’re not), please know this. Take it to heart. Remember this, for him and for me.
We “got” each other.
He was my greatest challenge, my soul, my aching heart, my joy.
I loved him.Read More
National Family Caregiving Advisory Council is formed to develop nationwide strategy
The RAISE Family Caregivers Act that passed in January 2018 requires the development of a national family caregiving strategy. The Department of Health and Human Services is currently accepting nominees for the Advisory Council which will help develop this strategy. HHS seeks nominees for National Family Caregiving Advisory Council
The Department of Health and Human Services (HHS) is currently asking for nominees to the National Family Caregiving Advisory Council.
The Family Caregiving Advisory Council is a result of the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act which was signed into law in January.
Autism Speaks helped pass this legislation to ensure that the millions of family caregivers supporting individuals with autism have access to the resources they need.
The National Family Caregiving Advisory Council will help HHS in the development of a national family caregiving strategy.
The Advisory Council will include the Administrator of the Centers for Medicare & Medicaid, Administrator of the Administration for Community Living, Secretary of Veterans Affairs, and potentially additional heads of other federal departments or agencies.
It will also include 15 voting members, with at least one from each of the following constituencies:
- Family caregivers
- Older adults who need long-term services and supports
- Individuals with disabilities
- Health care and social service providers
- Providers of long-term services and supports
- Employers
- Paraprofessional workers
- State and local officials
- Accreditation bodies
- Veterans
Federally funded efforts to recognize and support family caregivers.
Improving coordination of federal programs and activities to support family caregivers.
How family caregiving impacts Medicare, Medicaid, and other federal programs.
Ways to address the financial, health, and other challenges faced by family caregivers.
Evidence-based and innovative models for the provision of care by family caregivers or support for family caregivers.
To nominate yourself or another qualified individual for membership, submit your complete nomination packet according to the instructions in the federal register.
Nominations must be submitted by December 3, 2018 Read More
Autism Caregiver Skills Training: Helping families at home and abroad
The World Health Organization Caregivers Skills Training — developed in collaboration with Autism Speaks — is a practical and culturally adaptable training program to foster the social and communication skills of children with autism and other developmental issues, with a special focus on families in underserved communities.The World Health Organization Caregivers Skills Training – developed in collaboration with Autism Speaks – is a practical and culturally adaptable training program to foster the social and communication skills of children with autism and other developmental issues, with a special focus on families in underserved communities.The program aligns with Autism Speaks’ mission to increase understanding and acceptance of autism, increase early-childhood screening and intervention and ensure access to reliable information and service throughout life.
The program trains Master Trainers and Facilitators, who in turn train parents and other caregivers to use scientifically proven strategies for promoting child development, reducing disruptive behaviors and strengthening their own coping skills.
Last year, Autism Speaks and WHO began the global rollout of Parent Skills Training with Master Trainer workshops and pilot programs in the Philippines, South Korea and South America. The year also brought commitments from more than 20 governments to implement the program.
In 2017, Caregiver Skills Training debuted in the United States, with a Master Trainer workshop to train specialists who will pilot the program in two predominantly Latino and African American neighborhoods in Newark, New Jersey. Based on the results and refinements of this and other pilot studys around the world, Autism Speaks will help roll out programs nationally as well as abroad. (Stay tuned to this column for updates.)
We sat down with Lucia Murillo, Autism Speaks’ assistant director of education research, to discuss the program’s early successes and challenges and its promise to advance the organization’s mission to “enhance lives today and accelerating a spectrum of solutions for tomorrow.”
What was the inspiration behind the development of the Caregiver Skills Training program?
In our international work, it started from what we heard from parents and other caregivers in the countries we visited. Many of these parents went to great lengths and expense to get their children evaluated. But a diagnosis of autism didn’t necessarily lead to services or even information about the condition. For instance, on a trip to Albania, I heard from parents, teachers and healthcare professionals about how they didn’t know what to do to help a child diagnosed with autism. “We don’t have the skills. We don’t have support,” they told me. We’ve heard these concerns in many parts of the world. Professional behavioral therapy isn’t available to all – or even most – families in many countries.
In that kind of setting, Caregiver Skills Training is an intervention that parents and other caregivers can use to help their children when professional services are lacking. The strategies give parents skills that improve how they interact with their children and deal with challenging behaviors. The goal is for the parents to help foster their children’s communication and, when possible, their language skills. The emphasis is on skills that the parents and their children can use daily as they participate in activities at home, school and play.
One of the most important aspects of our pilot testing is to gauge how feasible it is to adapt this program to different communities and cultures around the world – including here at home.
What kind of expertise do you and your local partner organizations look for in a Master Trainer?
In general, our Master Trainers have some specialized training in child development that includes autism or related developmental delays or disabilities. In some countries, our Master Trainers include child psychologists, special education teachers, speech therapists and developmental pediatricians. In Newark, we trained three members of the Mom2Mom team. They’re not only parents of children with autism. They’re clinicians with backgrounds in behavioral intervention and training as peer mentors who provide support to families who call their help line. In addition, we trained two members of the Newark school district’s special education team and a social worker with Rutgers University Behavioral HealthCare.
How does the training provided to Master Trainers ultimately reach parents and other caregivers?
In many of the countries where we work, the Master Trainers have a lot of ground to cover. So the Master Trainers train non-specialists we call Facilitators. The Facilitators go back to their local communities to conduct group programs and visit individual homes to share the strategies with parents free of charge. Many of our facilitators are teachers, social workers, nurses and other community workers. They also include parents who are taking a leadership role in the autism community in their region.
However, we have no strict parameters for who is a Master Trainer or who is a Facilitator. Flexibility is key to adapting the Parent Skills Training program work in different communities and cultures at home and around the world.
What does the Caregiver Skills Training program bring to families in countries like ours where we have professional services?
This program was developed with the needs of underserved communities in mind, and these underserved communities exist here at home as well as abroad. We know, for example, that there are long waiting lists for services in many large metropolitan areas, and many people who live in rural areas have to drive long distances to get specialized care for their children. Even when their children are enrolled in therapy programs, parents may feel, rightly, that the services fall short of what their children need.
So in this country as in other high-income countries, Parent Skills Training is not meant to take the place of specialized services. Instead, it’s a way to supplement professional services and/or fill gaps while children are on waiting lists for these services.
The opportunity to launch our first U.S. workshop and evaluation study came through a grant from the Healthcare Foundation of New Jersey, in collaboration with our partners Mom2Mom of New Jersey. Mom2Mom is a program of Rutgers University Behavioral HealthCare. Its staff and volunteers operate a free, confidential, peer counseling helpline for mothers of children with special needs including autism.
We held our New Jersey Master Trainer workshop in January. The Master Trainers will soon be sharing what they learned with parents and teachers in two predominantly Latino and African American communities in Newark. As part of our study, we’ll be evaluating how well the program works in this new setting.
What are the plans for the Caregiver Skills Training program in Newark?
Two of our Mom2Mom Master Trainers will conduct a pre-pilot study that will evaluate how well the Caregiver Skills Training program works in Newark and how we might improve it. In preparation, they will take the strategies they learned in the workshop and practice them with an initial group of eight to ten families. They’ll be videotaping these sessions and sending them to us and our WHO collaborators. We’ll be able to review the video tapes and provide feedback on how they’re applying and sharing the strategies. This will also allow us to identify unanticipated challenges in adapting the program to best serve this community.
Once we’ve reviewed and provided feedback, the Mom2Mom team will invite a second group of eight to ten families to receive the training. During the program, the Master Trainers will make three home visits with each family and nine group sessions over three months. In selecting the families, they will invite those who have children between the ages of 2 and 9 who have a diagnosis of autism or another developmental disability or delay such as Down syndrome.
The program will be offered to families free of charge, which is our goal in all the countries where we work.
Please describe an example of a Caregiver Skills Training strategy designed to foster communication in a child?
We continue to revise and adapt the strategies we use in the program. That said, many of them focus on giving caregivers foundational skills and basic knowledge that will help them interact with their children in ways that foster the development of social and communication skills. As part of this, we discuss the different ways children communicate and the importance of speaking at the child’s developmental level.
For example, let’s say a child’s language skills are limited to one-word utterances. We teach the families to expand on this by repeating the word back to the child as part of a two-word phrase. So if the child says “juice,” the parent might reply “apple juice.” Similarly, we encourage play-based learning. For example, if the parent and child are building a block tower together, the child might say “block” when it’s his turn to place a block. The parent would encourage this by expanding on what the child said by saying “red block” when she places her block. In these ways, the parent focuses on responding to the child at his or her developmental level while encouraging social interaction.
Most of our communication strategies focus on following the child’s lead. When we respond and imitate what they say or do, the children see that we heard them and are paying attention. This is different from approaches where adults guide the interaction and ask the child to say something. Instead, we focus on giving the child the time to initiate communication without prompts, which is a more natural social interaction.
Please describe an example of a Caregiver Skills Training strategy designed to help a parent or other caregiver cope with the challenges of supporting a special-needs child?
We know that it’s important for parents and other caregivers to take care of themselves. It’s the familiar airline analogy of putting on your oxygen mask before helping others. So our program gives caregivers tools to help them deal with the stress of taking care of a child with a disability. One way we do this is by incorporating a three- to five-minute wellness and calming activity at the start of every group session. This is similar to a guided meditation, with the caregiver taking slow, deep breaths and silently repeating a calming word such as “relax” or “peace.” We want to encourage parents and other caregivers to practice these self-care strategies at home when they feel their stress levels rising. They are brief enough to be manageable for a busy family.
We also describe a series of steps that parents can use to help problem solve a situation. This includes considering the nature of the problem, listing possible solutions and weighing the pros and cons of each before trying them out.
All these self-care strategies recognize that caregivers feel overwhelmed sometimes. We want them to feel like they have tools to make parenting more manageable. Read More
Resources to support parents, grandparents, siblings and friendsWhat was the inspiration behind the development of the Caregiver Skills Training program?
In our international work, it started from what we heard from parents and other caregivers in the countries we visited. Many of these parents went to great lengths and expense to get their children evaluated. But a diagnosis of autism didn’t necessarily lead to services or even information about the condition. For instance, on a trip to Albania, I heard from parents, teachers and healthcare professionals about how they didn’t know what to do to help a child diagnosed with autism. “We don’t have the skills. We don’t have support,” they told me. We’ve heard these concerns in many parts of the world. Professional behavioral therapy isn’t available to all – or even most – families in many countries.
In that kind of setting, Caregiver Skills Training is an intervention that parents and other caregivers can use to help their children when professional services are lacking. The strategies give parents skills that improve how they interact with their children and deal with challenging behaviors. The goal is for the parents to help foster their children’s communication and, when possible, their language skills. The emphasis is on skills that the parents and their children can use daily as they participate in activities at home, school and play.
One of the most important aspects of our pilot testing is to gauge how feasible it is to adapt this program to different communities and cultures around the world – including here at home.
What kind of expertise do you and your local partner organizations look for in a Master Trainer?
In general, our Master Trainers have some specialized training in child development that includes autism or related developmental delays or disabilities. In some countries, our Master Trainers include child psychologists, special education teachers, speech therapists and developmental pediatricians. In Newark, we trained three members of the Mom2Mom team. They’re not only parents of children with autism. They’re clinicians with backgrounds in behavioral intervention and training as peer mentors who provide support to families who call their help line. In addition, we trained two members of the Newark school district’s special education team and a social worker with Rutgers University Behavioral HealthCare.
How does the training provided to Master Trainers ultimately reach parents and other caregivers?
In many of the countries where we work, the Master Trainers have a lot of ground to cover. So the Master Trainers train non-specialists we call Facilitators. The Facilitators go back to their local communities to conduct group programs and visit individual homes to share the strategies with parents free of charge. Many of our facilitators are teachers, social workers, nurses and other community workers. They also include parents who are taking a leadership role in the autism community in their region.
However, we have no strict parameters for who is a Master Trainer or who is a Facilitator. Flexibility is key to adapting the Parent Skills Training program work in different communities and cultures at home and around the world.
What does the Caregiver Skills Training program bring to families in countries like ours where we have professional services?
This program was developed with the needs of underserved communities in mind, and these underserved communities exist here at home as well as abroad. We know, for example, that there are long waiting lists for services in many large metropolitan areas, and many people who live in rural areas have to drive long distances to get specialized care for their children. Even when their children are enrolled in therapy programs, parents may feel, rightly, that the services fall short of what their children need.
So in this country as in other high-income countries, Parent Skills Training is not meant to take the place of specialized services. Instead, it’s a way to supplement professional services and/or fill gaps while children are on waiting lists for these services.
The opportunity to launch our first U.S. workshop and evaluation study came through a grant from the Healthcare Foundation of New Jersey, in collaboration with our partners Mom2Mom of New Jersey. Mom2Mom is a program of Rutgers University Behavioral HealthCare. Its staff and volunteers operate a free, confidential, peer counseling helpline for mothers of children with special needs including autism.
We held our New Jersey Master Trainer workshop in January. The Master Trainers will soon be sharing what they learned with parents and teachers in two predominantly Latino and African American communities in Newark. As part of our study, we’ll be evaluating how well the program works in this new setting.
What are the plans for the Caregiver Skills Training program in Newark?
Two of our Mom2Mom Master Trainers will conduct a pre-pilot study that will evaluate how well the Caregiver Skills Training program works in Newark and how we might improve it. In preparation, they will take the strategies they learned in the workshop and practice them with an initial group of eight to ten families. They’ll be videotaping these sessions and sending them to us and our WHO collaborators. We’ll be able to review the video tapes and provide feedback on how they’re applying and sharing the strategies. This will also allow us to identify unanticipated challenges in adapting the program to best serve this community.
Once we’ve reviewed and provided feedback, the Mom2Mom team will invite a second group of eight to ten families to receive the training. During the program, the Master Trainers will make three home visits with each family and nine group sessions over three months. In selecting the families, they will invite those who have children between the ages of 2 and 9 who have a diagnosis of autism or another developmental disability or delay such as Down syndrome.
The program will be offered to families free of charge, which is our goal in all the countries where we work.
Please describe an example of a Caregiver Skills Training strategy designed to foster communication in a child?
We continue to revise and adapt the strategies we use in the program. That said, many of them focus on giving caregivers foundational skills and basic knowledge that will help them interact with their children in ways that foster the development of social and communication skills. As part of this, we discuss the different ways children communicate and the importance of speaking at the child’s developmental level.
For example, let’s say a child’s language skills are limited to one-word utterances. We teach the families to expand on this by repeating the word back to the child as part of a two-word phrase. So if the child says “juice,” the parent might reply “apple juice.” Similarly, we encourage play-based learning. For example, if the parent and child are building a block tower together, the child might say “block” when it’s his turn to place a block. The parent would encourage this by expanding on what the child said by saying “red block” when she places her block. In these ways, the parent focuses on responding to the child at his or her developmental level while encouraging social interaction.
Most of our communication strategies focus on following the child’s lead. When we respond and imitate what they say or do, the children see that we heard them and are paying attention. This is different from approaches where adults guide the interaction and ask the child to say something. Instead, we focus on giving the child the time to initiate communication without prompts, which is a more natural social interaction.
Please describe an example of a Caregiver Skills Training strategy designed to help a parent or other caregiver cope with the challenges of supporting a special-needs child?
We know that it’s important for parents and other caregivers to take care of themselves. It’s the familiar airline analogy of putting on your oxygen mask before helping others. So our program gives caregivers tools to help them deal with the stress of taking care of a child with a disability. One way we do this is by incorporating a three- to five-minute wellness and calming activity at the start of every group session. This is similar to a guided meditation, with the caregiver taking slow, deep breaths and silently repeating a calming word such as “relax” or “peace.” We want to encourage parents and other caregivers to practice these self-care strategies at home when they feel their stress levels rising. They are brief enough to be manageable for a busy family.
We also describe a series of steps that parents can use to help problem solve a situation. This includes considering the nature of the problem, listing possible solutions and weighing the pros and cons of each before trying them out.
All these self-care strategies recognize that caregivers feel overwhelmed sometimes. We want them to feel like they have tools to make parenting more manageable. Read More
Many primary caregivers of children and adults with autism are family members. We developed tools to help parents, grandparents, siblings and friends of people with autism understand more about autism and learn to best support their loved ones on the spectrum.
A Parent's Guide to Autism
If your child has recently been diagnosed with an autism spectrum disorder, you have come to the right place.
A Parent’s Guide to Autism was developed as part of Autism Speaks’ series of Family Support Tool Kits to support you and promote a positive future for your child and family during an often challenging time.
You are not alone in this journey and this guide is a step toward finding the help you need to travel the road to optimal outcomes for you, your child and your family.
Sections include:
- Response to the Diagnosis
- Your Role as a Parent
- Ten Things a Parent Can Do to Help their Child with Autism
- Building a Support Network
- Taking Care of Yourself
- Personal Story: How I Let Go of My Expectations and Learned Unconditional Love
- Frequently Asked Questions
Trending on social
"Trending on social" highlights one of the many heartwarming images shared with us by the autism community on our social channels. You can find this photo and many others by following us on Instagram. See More
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