Have you read Welcome to Holland, an essay by Emily Perl Kingsley, a Sesame Street writer and parent of a special needs child? She intended it to help others understand the Herculean task of parenting special children. You can find a YouTube version created by Renay Jones, or you can read the abbreviated text here:
“When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport. Only when you land, the stewardess says, WELCOME TO HOLLAND. You look at one another in disbelief and shock, saying, HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY!
But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay.
'BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!' you say. 'I DON’T WANT TO STAY!' But stay you do. You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed. The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned.”
The essay goes on to expand the metaphor, describing the beautiful and unique features of Holland. It closes with the experience of the loss of the dream: “The pain…will never go away. You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.”
The theme of Kingsley’s essay involves resilience, which has been called “the courage to come back.” What is resilience anyway? According to the American Psychological Association, resilience is defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or significant sources of stress.” You can see that this ability to adapt well is a superpower to activate, a valuable force for us as we parent our special children. Good news: Resilience is a normal response, not an exception. Resilience will also likely include some level of emotional distress—the adversity demands the resilient response. Resilience involves behaviors, thoughts and actions that can be learned and developed in anyone and in any parent.
What has resilience research revealed? A 32-year longitudinal study by developmental psychologist Emmy Werner followed a group of 698 children in Kauai, Hawaii, from before birth through their third decade of life. This study provides great insight into resiliency:
One-third of the children were at-risk (came from unstable backgrounds, etc.)
One-third of the at-risk children flourished in the face of adversity. Why?
The research revealed that these children experienced an “internal locus of control.” They believed that they, and not their circumstances, affected their success. These children also learned to weigh the circumstances and adapt; for some, resilience was learned over time.
Lastly, the children learned to adjust perception: Do you interpret an event as traumatic or an opportunity to grow? It’s only traumatic if you experience it that way. Do parents of children with special needs experience trauma, stress, adversity and the like? The answer is YES! The stress can manifest in many ways: pushback from IEP teams, student safety concerns, homework struggles, scheduling challenges like managing multiple appointments and activities, limited family support, financial strain, and more. Furthermore, research has found that moms of autistic children--especially those parenting teens and adults with ASD--experience chronic stress similar to that endured by combat soldiers.
In light of this and other research, how do special parents become resilient? First, remember that each of us responds to adversity individually. Find the strategies that work best for you. Also remember: “Children learn more from what we do than what we say…so your resilience affects theirs.” -----Mark Bertin, mindful.org.
Some Resilience Tips to Consider:
1.Accept that change is part of life. Accept what is and what isn’t a part of your story. Focus on what you can change.
2.Take action! In areas that are under your control, do something instead of hoping that the adversity will go away by itself. For example, email your child’s teacher about your concerns; request an IEP meeting to review data towards progress, etc.
3.Look at what you’ve gained. Take time to identify the skills, strength, and knowledge that you have gained through adversity.
You can be resilient in the face of your unique challenges as a parent of special needs children. Believe that you, not your history or circumstances, control your success. Begin to weigh circumstances and adapt as needed. Like the children in the Werner study, be willing to alter your perception of yourself and your child’s circumstances in ways that serve you both. Use the gifts and skills that you have to move yourself and your family forward!
Thank you to Betsy Hamblin of San Diego, CA who often serves as a writing consultant at Sanford Autism Consulting.
Are meltdowns common at your house? It has definitely gotten better for us now that my daughter is seven. But, when she was younger, we experienced our fair share of meltdowns. These extreme reactions to small problems are typical for children on the Autism spectrum. Why? Likely due to challenges with emotional/self-regulation.
Emotional regulation is the ability to monitor and control our behavior or emotions and adjust them based on the situation. For example, when we are well regulated we can cheer ourselves up when we’re sad and calm ourselves down when we’re upset.
So, why do our kiddos with Autism struggle so much in this area?
One reason is that individuals with Autism typically have challenges with executive functioning skills. These skills are controlled by the frontal lobe of the brain and help us to use past information to make action in the present. Executive function skills include: shifting attention, flexible thinking, inhibiting emotions and organizing/planning. Individuals with Autism also tend to have poor working memory skills and sensory sensitivities. The combination of these challenges makes it very hard to navigate the requirements of daily life and stay emotionally regulated.
What can parents do to help?
1. Observe your child: Simple, but not really. Without intervening, watch how they handle the daily stressors of life. What behaviors are they currently using to cope? This will be helpful to know as you assist them in developing a plan for using more productive and "expected" behaviors.
2. Size of the Problem: Discuss the daily problems that your child typically experiences as a "range", like from 1-10. For example, a broken pencil is a 1. We have control over this situation by simply getting a new pencil. But a broken leg may be an 8 or 9. We have little control over this situation once it has happened. We must depend on others and time to help. Typically, our children with Autism go from 0-10 when problems occur without understanding the gray area in between.
Also, we can discuss the expected reactions for different size problems. For example, if you break your pencil it is expected that you will just choose a new one. Crying, screaming or yelling would be unexpected in this situation. Michelle Garcia Winner has developed awesome materials to assist with teaching these concepts, found at socialthinking.com.
3. Zones of Regulation (ZOR): ZOR is a great program developed by Leah Kuypers, an Occupational Therapist (zonesofregulation.com). ZOR is a visual framework that puts words to our feelings with appropriate strategies for getting into a “good space”.
4. Social Narratives: Social narratives are short stories with and/or without pictures that honor the feelings and thoughts of the child while explicitly teaching the expected behaviors for specific situations. These stories can be developed by caregivers and clinicians with the participation of the child if possible. Carol Gray’s stories are a great example of social narratives (carolgraysocialstories.com).
Over the years, we have created numerous social narratives for my daughter to help guide her through situations such as attending birthday parties and fire drills at school. Now, we keep the stories in a binder for her to review at her leisure. It is important to note, however, that social narratives should be created, discussed and reviewed prior to the target situation occurring. As for most of us, "in the moment" of the situation it may be too challenging to review strategies and successfully attain emotional regulation.
Meltdowns for children with Autism are common. However, there are many strategies to help support them in building emotional regulation along their Autism journey.
References: Researchautism.net; Psychologytoday.com; Education.com; www.hope-therapies.com
This month in our live webinar, we will explore A Parent's Guide Autism Across the Age Span. Let's learn together and develop appropriate expectations for our children at every stage.
Come with questions, leave empowered!
Our topics will include:
Our webinar will take place online within a private Facebook group created just for you and fellow parents of Autism. Prior to the event, you will receive an email with your link to the group. Within the group page you will also find handouts for the event for you to download and review in preparation for our class.
Can't watch live??? No worries. You will have access to the content for up to one week after the class. So feel free to watch, comment, and/or ask questions at your convenience.
Each of our parent webinars is structured, yet interactive and fun! There is also always time allotted for questions and answers.
BONUS: Each attendee will receive a $50 gift certificate to be used toward any services with Sanford Autism Consulting, including: future workshops/webinars, IEP coaching, new diagnosis consultation or social skills assessments.
This webinar will sell out!! Space is limited to ensure an intimate, interactive setting where questions can be answered and all attendees can be supported. Please register today to secure your spot: onlineaprilparentgroup.eventbrite.com.
The call…”Mrs. Sanford, there has been an incident at school.” My heart sinks as I hear that my six-year old child with High-Functioning Autism has been the target of bullying by her peers. We immediately convene multiple meetings to address the issue and to ensure that this type of behavior does not happen again.
In recent years, incidents of bullying in various degrees have filled our news and social media venues. In an article from 2000 (Counseling and Human Development), author Barry K. Weinhold stated that "bullying is the most common type of violence in contemporary US society".
Research reveals that children with Autism Spectrum Disorder (ASD) unfortunately experience bullying even more than their neurotypical peers. For example, one study found that a total of 63% of 1,167 children with ASD had been bullied at some point in their lives (iancommunity.org). Another study found that those impacted by High-functioning Autism and/or Asperger's Syndrome were bullied more than children more significantly impacted by Autism.
The Bullying-Autism Connection
So, why is there a connection between Autism and bullying?
1. First, those who bully typically have been bullied themselves in some form. So, bullying others becomes a coping strategy for managing their own unresolved pain.
2. Because of theory of mind or “mind reading” challenges and social skill difficulties, our children with ASD become vulnerable targets for bullying. For example, they typically struggle to infer the intentions of others or have difficulty reading body language and other nonverbal cues. Those who bully find it easy to take advantage of these weaknesses.
How Can We Help?
There are several strategies to help decrease the incidence of bullying for our children with Autism.
The reality of bullying is far too familiar to families impacted by Autism Spectrum Disorder. As a clinician and Autism parent, I have experience from two perspectives. I believe that we can and we must do more to address bullying at various levels. Let's do what we can to see change for all, especially for our children with ASD 💙
This month our focus is on improving various relationships impacted by Autism. One example is friendships. Starting and keeping friendships for our kids with Autism can be tough. Wondering about strategies to help?
1. Embrace Solitude: If your child falls anywhere on the Autism spectrum, then you are likely aware that they tend to be happiest when they are by themselves. As neuro-typicals, this may be hard for us to accept. However, it is vital to embrace this truth early on. It will decrease frustration and anxiety as we parent our child with their unique needs by honoring their need to be alone. This does not mean that we do not actively assist them in developing healthy relationships with others. However, this should relieve just a little bit of the pressure.
2. Structured Play Groups: These are small play groups supported by trained adults. The groups include children with and without Autism. All kids have the chance to practice good friendship skills (ex: sharing, turn-taking, etc.) in a natural environment.
One example of this is Circle of Friends, a nationwide "school inclusion program that builds genuine friendships between students with special needs and their general education peers". I had the pleasure of starting a Circle of Friends chapter at a local high school many years ago and have done the same at a local middle school. The benefits seen by both children with and without special needs are priceless. You may consider talking to your child's school or special education team about starting a chapter at your school.
3. Video Modeling: As most of our children have a high interest in visuals, using videos to model and teach target behaviors (ex: greetings, playing a game, etc.) is an awesome strategy. Ideally, you should catch the moment and video your child when they are using the target behavior. Watching themselves in the video definitely helps to increase engagement. However, YouTube is also a great source for these videos that model positive friendship and social skills
4. Attend Local Events: Is your child with Autism really into Thomas the Train, dinosaurs, etc? Find local. small events at your neighborhood library, park or toy store where their passion is the theme. Your child will be able to engage with their peers and they will likely shine as the expert on the topic. This setting may also increase your child's motivation to engage with their peers since the topic is highly motivating. Another bonus: As a parent you may meet other like-minded parents and develop friendships of your own. Some San Diego resources include the San Diego Children's Museum and the Autism Tree Project Foundation.
Friendships for our children with Autism may take effort, however learning and practicing key skills early on in a variety of environments may reap a lifetime of benefits.
References: The Complete Guide to Asperger's Syndrome (Tony Attwood), AFIRM Modules
So, are you one who still hasn’t developed goals for the New Year? Are you more focused on your child’s IEP goals with no time left to think about yourself or your family as a unit? Don’t worry, you are not alone. But, don’t give up, it’s not too late.
Here are my tips for experiencing your best year yet! I warn you, these suggestions may surprise you as they have less to do with productivity and more to do with reducing stress and enjoying life’s journey. I believe that by focusing on increased laughter, sleep, and time outdoors in nature, we are giving our bodies space to refuel. As I have started becoming more intentional in each of these areas, I can attest that I feel happier and am more empowered for whatever comes my way as a wife, special needs parent, and business owner. So, let’s begin…
This month, I posted about the therapeutic benefits of laughter on my social media outlets. Why laughter?
~It stimulates many organs and increases endorphin release in your brain. This "feel good" chemical can help to improve your overall well-being and quality of life. Who doesn't need that?
~Laughter activates, and then cools down your stress response. This makes you feel relaxed for up to 45 minutes after a good laugh.
~Laughter stops distressing emotions. You can't be depressed or angry and laugh at the same time. So, the next time you get down in the dumps about your life or your child's situation, think about something funny that your child did or said and laugh!
Laughter also has the ability to strengthen relationships, enhance teamwork and diffuse conflicts. All of these are welcomed in our home, how about you?
The National Sleep Foundation (NSF) set new recommendation averages for sleep in 2015:
~Young children (ages 1-5) should average 10-14 hours/day
~School-Age/Teens (ages 6-17) should average 8-11 hours/day
~Young Adults/Adults (ages 18-64) should average 7-9 hours/day
So, there is no condemnation parents if you or your kiddos are not getting the right amount of sleep. For all of us, I am sure that there is room for improvement. But let’s consider why improving our sleep habits can be important.
Benefits of SLEEP
Researchers at Harvard and Boston College found that sleep may help enhance the creative process. It has been also found to decrease anxiety in adults and improve attention and learning in children. Researches added that severe and consistent sleep deprivation can impair learning. However, it is suggested that we try to find a way to improve our sleep each night, as sleeping longer on weekends does not yield the same results.
Tips for Improving Sleep
~Be consistent! For individuals with Autism, consistency is key when learning new concepts. Try to develop a sleep routine and stick to it. Adding a picture list or social story to show the routine may be helpful
~Reduce visual stimulation as you get closer to bedtime. For example, we shut off tablets and T.V. at least 30 minutes prior to bedtime. This helps our kids’ brains to start winding down.
3. Get Outdoors
I must admit that my husband is much better at getting outdoors than I am. I believe it comes from his years of living in a rural community and my years of living in the city. He was even wise enough to use this passion in caring for our children. One day when our daughter with Autism, “Amazing Grace”, was quite fussy as an infant, my husband decided to take her outside for a walk. It was magical how she calmed down almost instantly. He and I began to use this strategy regularly with the same results. I was so excited to see this simple yet powerful remedy in action.
What are the benefits to being in nature?
~Improves mental health, such as a reduction in depression
~Rigorous activity outdoors translates to better academic performance
~Reduces stress levels and increases feelings of happiness and overall better health
So, no matter what your goals are for the New Year, consider taking time to increase the amount of laughter, sleep and time spent outdoors for your family. This may translate into significant benefits for everyone.
Comment below and let me know about one of your top goals for 2018. Let's support each other in the journey!
health.com (2013), https://www.huffingtonpost.com/entry/5-benefits-of-being-outdoors_us_5938266ce4b014ae8c69dce0
Have you ever wondered how you can help your child become a better reader? Is your young child highly interested in letters, sounds and words? My daughter was. At age 17 months, she could already identify all letters and sounds. However, she was delayed in her fine and gross motor skills and had just started walking independently. This is when my suspicion of an Autism diagnosis began.
Many children with High-Functioning Autism develop reading decoding skills early, referred to as being “hyperlexic”. It was initially identified by Norman E. Silberberg and Margaret C. Silberberg (1967), who defined hyperlexia as the precocious ability to read words without prior training in learning to read, typically before the age of 5. My daughter began identifying sight words early on and was reading simple books by age 3 ½. However, she continues to struggle with making meaning from what she reads and responding to more open-ended questions about grade level text.
How can you support children who struggle with reading comprehension? There are certain strategies that work and are truly beneficial for all kids as they mature as readers. Here are a few:
Let’s support our children and help to prepare them to become life-long learners. Building good reading skills is one way to do that. Feel free to contact me for more information on this topic.
References: Think and Speak Successfully by C. Dunaway (2012). Photo: Lee Live-Photographer (www.ourdreamphotography.com).
Do you have fond memories of cooking with your family as a child? Or, do you remember the special dishes that your parents would make for the holidays? One of my favorites was my grandma’s lemon cake and homemade frosting. Yum!
Wouldn’t it be awesome to create some of those same memories with your child? But maybe you’re thinking that you can’t because of their challenges related to an Autism diagnosis. Well, don’t let that stop you. Below is a list of just four of the benefits of cooking with your child with Autism. Happy cooking!
2. Fine Motor Skills Practice: Cutting, dicing, slicing, stirring and even pouring are all great ways to practice fine motor and self-help skills. For example, research shows that cooking provides the opportunity to use hand strength and eye-hand coordination (Colker, 2005).
3. Executive Functioning: Planning, attention and problem solving are just a few of the processes of executive functioning. These can be easily developed through cooking through tasks such as following a picture recipe, prepping ingredients, and monitoring food while it bakes in the oven.
4. Improve Variety of Food Choices: When kiddos are involved with meal prep, it helps to increase their interest in eating more of a variety of foods. My kiddo ate half of half of a blueberry waffle (pictured here), which for her is great! She has also begun drinking a few ounces of the fruit & veggie smoothies that we all make together in the mornings.
I hope that you are inspired to try cooking with your child with Autism. Check out these resources for more information: The Cookbook for Children with Special Needs, by Deborah French. The Picture Cookbook: No-Cook Recipes for the Special Chef, by Joyce Dassonville. Everybody Can Cook, by Cricket Azima. Brain Balance Achievement Centers www.brainbalancecenters.com/blog. www.friendshipcircle.org. www.difflearn.com. www.education.com Cooking with Children, Bullard, 12/2010. www.thekitchn.com,
J. Thompson, May 2017. Highlights magazine, www.highlights.com.
Crystal Sanford, M.Ed., M.A. CCC-SLP is an Educational Consultant, IEP & Autism Advocate and Speech Pathologist. She is also the host of an inspiring podcast, Thriving Special Families! Her passion is advocating STRONG alongside fellow Autism and special needs moms, helping them to persistently pursue what their children deserve at school. In her free time, she enjoys gardening and spending time with her husband and two children in San Diego, CA.