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.
Did you know???
Statistically, boys with Autism Spectrum Disorder (ASD) outnumber girls 4:1. However, many agree that "higher functioning" girls with ASD often get overlooked. They have been referred to as "lost girls" or "hiding in plain sight". Learn more...
Here are a few signs to notice:
Excessive interest in specific areas (ex: unicorns, Barbie, makeup application, clothing designers, etc.)
If you have concerns that your daughter may be impacted by ASD, contact a pediatrician or psychologist with experience assessing children with Autism.
The assessment process for Autism Spectrum Disorder (ASD) is often confusing. While most children with ASD symptoms are identified at school and evaluated for Special Education Services or an Individualized Education Plan (IEP), many are also identified by pediatricians, therapists, or even friends and family members. Getting the most accurate diagnosis will be determined by many factors, but here are some useful ones to consider:
1. Schools, medical providers, community mental health agencies, psychologists, or neuropsychologists may be able to provide formal diagnostic assessment for ASD. In schools, a team of professionals can provide an educational diagnosis of ASD for the purposes of qualification for Special Education (to get an IEP). This is different than a medical diagnosis of ASD from a medical doctor or psychologist. A medical diagnosis might be used to provide a diagnostic code so that insurance will help pay for therapy and other services, such as Applied Behavior Analysis (ABA).
2. Parents, guardians, and caregivers should know which assessments are being used in an evaluation and why. Ask which assessments are being used (or have been used) in the assessment process. While there is no medical test for diagnosing ASD, there are many ways that professionals gather diagnostic information. They might use questionnaires, observations, interviews, and/or standardized assessment measures like an IQ test. All of this information should be used together to determine the best diagnosis and treatment for your loved one.
3. The Autism Diagnostic Observation System, 2nd Edition (ADOS-2) is the gold standard for accurate assessment and diagnosis. The ADOS-2 is completed in a one-on-one setting with a professional, sometimes with other observers to help with taking notes. The assessment looks like a series of activities and questions, depending on the age and developmental level of the person being evaluated. This assessment is the most well-researched way to determine if someone has ASD or not.
4. Rating scales, such as the Gilliam Autism Rating Scale (GARS-3) and the Autism Spectrum Rating Scales (ASRS) can provide valuable information across settings. This type of information should be collected from both home and school. These rating scales alone are not usually enough to provide an accurate diagnosis.
5. A thorough assessment for Autism Spectrum Disorder should always include evaluation of cognitive and adaptive functioning. Individuals with Autism Spectrum Disorder often have a lot of strengths and weaknesses when compared to others their same age. Due to the symptoms of ASD, many people on the spectrum have difficulty with language, social functioning, and/or self-care activities.
6. A proper diagnosis of ASD will include the level of severity, or how much support a person requires. The Diagnostic and Statistical Manual, 5th Edition (DSM-V) includes three levels of severity:
7. Many individuals with Autism Spectrum Disorder also have other diagnoses. The most common are Attention-Deficit/Hyperactivity Disorder, anxiety disorders, and depressive disorders. Each of these areas should be thoroughly evaluated prior to determining which services might be most useful.
8. A family history of Autism Spectrum Disorder, whether diagnosed or not, is important information to consider. Whichever professionals are completing the assessment for your loved one, be sure to let them know if any family members have experienced Autism Spectrum Disorder symptoms. It’s also useful to note other types of mental health problems, such as anxiety and/or depression symptoms, since these are so common in general and are particularly common for those with Autism Spectrum Disorder.
9. The rigidity of Autism Spectrum Disorder sometimes looks like Obsessive Compulsive Disorder (OCD), and vice versa. A clinician should be able to assess OCD symptoms, including obsessions and compulsions, in order to determine an accurate diagnosis. A tool such as the Children’s Yale-Brown Obsessive Compulsive Scale (CY-BOCS) can be used as an interview or questionnaire to gather this information.
10. The social withdrawal of Autism Spectrum Disorder sometimes looks like Social Anxiety Disorder, and often both diagnoses are valid. Questionnaires such as the Behavior Assessment System for Children, 3rd Edition (BASC-3) or Screen for Child Anxiety Related Disorders (SCARED) can provide professionals with useful information on various anxiety symptoms and disorders.
There is no one way to assess or diagnose Autism Spectrum Disorder. Hopefully these 10 tips have given you some more knowledge and, therefore, POWER in making decisions for your loved one!
Thank you to our guest blogger: Erika J. Vivyan, PhD is a Licensed Psychologist in Texas. She specializes in the assessment and treatment of school-aged children, teens, and young adults. Her areas of expertise include assessment, anxiety, and behavior. Find her on Instagram or online at drvivyan.wordpress.com.
Do you struggle with getting your child to try new foods?
Colors, textures and smells are often startling and offensive to those who have “Spectrum” challenges. In my work as an integrative nutritionist and mental health clinician, I steer away from words like disorders and diseases because research shows that people have different learning styles and capacities in a variety of areas.
It’s about the neurological wiring in the brain and what is exciting about this time in healthcare is that by shifting the diet towards inclusion of a variety of foods, there is a positive impact on the processing that takes place. But that is often where we can get stuck as parents and caregivers. Many of those with Spectrum challenges prefer little to no scent, limited textures (often soft) and bland colors and flavors – the white foods!
When I work with both children and adults, I often ask what would you like more of?
With young children, we often look to their super heroes and identify characteristics that he/she may want to gain. We then talk about what foods positively affect that area of the body. Anyone remember Popeye the sailor? I may suggest trying 1-2 new foods along with having the child do some drawings for me until we meet again. I also suggest going to the market and being involved in the preparation of the food. Engage your child and if possible, others in the family, making this a family affair.
While my strategies may differ somewhat with other age groups, there are a few tips that can help anyone in this process:
Repeat it over and over for the brain to learn to identify the new food – and tell your family member this – it takes time for the brain to learn to like a new food!
Here’s to finding that Rainbow in life!
Thank you to guest blogger Julie Freeman, MA, RD, LD, RYT (Integrative Nutritionist and Mind-Body Clinician), www.juliefreeman.net.
If your child has an IEP, you are probably familiar with the anxiety that often accompanies IEP assessments. My experience as an Educational Consultant, Autism Coach and Autism Parent gives me a window into the IEP process that helps you see it clearly. Your anxiety will be quelled when you know what I know...
What is an IEP anyway?
The initials stand for Individualized Education Program, both a document and a process for educating students with disabilities. The process is described and governed by our nation’s special education law PL 94-142 (1975), renamed in the 1990’s as IDEA (Individuals with Disabilities Education Act). The primary purpose of IDEA is to ensure that all students with disabilities have available to them a free and appropriate education designed to meet their unique needs.
Why are children assessed for special education?
The IDEA includes the Child Find Mandate, requiring all school districts to identify, locate, and evaluate all children with disabilities, regardless of the severity. Students with suspected disabilities should be assessed in all areas to determine eligibility for services and to determine their educational needs.
The Initial Assessment
Sometimes, a school identifies that a child may need a special education assessment. However, as a parent, you can also make a request for assessment in writing. Both initiate the Initial Assessment process for special education.
If a parent requests an assessment and the school believes that an assessment is not in order, they can respond with a letter stating such (Prior Written Notice). However, the school typically responds to the written request with an assessment plan. The clock starts ticking because the parent has 15 calendar days to respond to the school’s plan.
Once the parent submits the signed assessment plan and it is received by the school, the school is required to complete this initial assessment within 60 days and hold a meeting to review test results. Based on the meeting and assessment findings that identify the student’s special education needs, parental consent is then required to initiate appropriate special education services.
What happens during the assessment?
A student is assessed by a wide variety of tools that measure several aspects of the student’s learning: Psycho-educational; Academic; Health; Speech-Language; Occupational Therapy; Adapted Physical Education; Functional Behavior Assessment; Supplemental Support Assessment, etc. The assessments are performed by individuals who are competent to execute them: School Psychologist, Speech-Language Pathologist, Special Education Teacher, School Nurse, and other such professionals. The assessments are provided in a student’s primary language. In addition, they are recognized as unbiased assessment tools yielding results that have been found to be reliable and valid over time and across varied school environments.
What makes a child eligible for Special Education?
After the assessment data has been reviewed, the IEP team also reviews the student’s present levels of performance (PLOP) in all areas (reading, writing, math, communication, motor skills, social-emotional, etc.). Next, the team determines appropriate goals to address the particular unique needs of the child. Lastly, the IEP team identifies the specific category where the student meets eligibility.
There are currently thirteen Special Education eligibility categories listed under IDEA, including these: Autism; Specific Learning Disability; Other Health Impaired; Hearing Impairment; Visual Impairment, Intellectual disability, and Speech-Language Impairment. Remember, an eligibility category does not serve as a medical diagnosis. However, it does assist in describing a student’s current unique challenges so that they can receive the appropriate supports at school.
To ensure a continuation of appropriate special education services, a thorough Triennial Evaluation is conducted regularly, as described in IDEA. It requires that students be re-evaluated in all areas of suspected disability at least every three years (i.e., triennial review) to determine eligibility and students’ educational needs.
The process for this Triennial Assessment is similar to the Initial Assessment:
Upon being notified of your upcoming IEP meeting for the Initial or Triennial Assessment, parents can request copies of all assessment reports and the DRAFT IEP one week prior to the IEP meeting. Assessments can be complex to read, so request support from experienced friends and professionals as you review results, making notes and documenting your questions.
What should parents look for in a quality Assessment report?
Key Points to Remember about IEP meetings:
Parents, you are your child’s best advocate! Trust your gut as you participate in your meetings and discussions and take time to review the results. Most importantly, remember that every child can learn in his or her unique way. I hope that this information has helped minimize anxiety as you approach the IEP assessment process for your child. Remember to enlist support along the way from professionals and knowledgeable friends as you advocate for your child.
Thank you to our writing consultant, Betsy Hamblin!
Additional resources: Parents Rights in CA; Wrightslaw book
Have you ever had a moment when your child did or said something awkward in public? Then, the response from people around you was less than favorable? How did you respond? A situation such as this happened for us recently. As a result, I had an “ah-ha” moment, as an Autism mom, ally, and advocate.
Recently, we were attending a community festival. My daughter “Amazing Grace” initially chose to play in a jumpy house area made for younger children (0-5) instead of the larger and more challenging jumpy obstacle course made for children her age (6 years +). After a while, I encouraged Grace to try the other area which was more age-appropriate. I could feel the eyes of the person monitoring the jumpy. I imagined that she wondered, “Why does this 8-year old want to play in this small jumpy?” and “Why is she having such a hard time leaving upon request?” At this moment, I realized that I had two options: I could become upset or offended or I could use this as a teachable moment. On this day, I chose the latter. I began to inform the jumpy monitor about Grace and her unique challenges related to Autism. The young ride operator was very grateful, as she had no understanding or knowledge about Autism Spectrum Disorders (ASD).
After giving Grace a 5-minute countdown, she was able to transition to the larger and more challenging jumpy obstacle course. She had a blast! She slowly built her confidence and was able to successfully navigate the play area along with her peers. (The next challenge was getting her to leave this play area 😉)
The incident at this festival is just one example of how we can turn those awkward moments into teachable moments. As parents and allies, we want everyone to embrace Autism…moving from awareness to true acceptance. However, some people are truly ignorant when it comes to the challenges and great strengths of our kids and young adults. How can we expect the world to know more and make better choices if we don’t educate them? This is my epiphany, although the implementation is a work in progress….
Parents let’s continue to advocate strong for our kids with unique needs. If not us, then who?
Do you ever wonder what goes on in your child’s mind? Or, if you are parenting a teenager, maybe you don’t want to know...I think every parent wonders what their child is thinking at times, especially when they are infants or toddlers. However, for the Autism parent, this feeling happens much more often and for a longer time span...maybe throughout their childhood or even into adulthood.
I can remember working with a family once and the mother told us a devastating story at her son’s IEP (Individual Education Program) meeting. She shared that her greatest concern for her son was for him to be able to tell her about his feelings. Her son was an eight-year-old at the time who was significantly impacted by Autism and minimally-speaking. One night, when helping him with his bath, this mom noticed that her son had a terrible scratch on his leg that looked as though it had happened that day. He winced as she tended to his injury. This mom realized that her son had been injured somehow that day and was unable to tell her that he was sad, hurt, or in pain. She cried as she told us this story at the IEP meeting, and inside I cried for her, too. This was many years ago, before my own daughter “Amazing Grace” was diagnosed with Autism Spectrum Disorder.
Language and communication are one of the hallmark areas of challenge for individuals with Autism. This can manifest differently from one person to another. It can be as significant as being unable to tell someone that you are hurt. However, for individuals less impacted by Autism, many still struggle to effectively discuss their feelings and the feelings of others. Though their academic vocabulary may be strong, beyond their peers, many individuals with Autism have a very immature emotional vocabulary.
I recently had a moment with my daughter that typifies this concept. For several years, Grace has expressed her distaste for me when I coo and “talk” to babies that we see in stores, at parks, etc. She has mentioned to me that I should not talk to babies as that is “not my business”. However, recently when this situation occurred, Grace was able to use words to explain to me her truefeelings for the first time. She told me that when I engage with babies, she feels “sad and unloved” and she further asked “Mom, you do still love me…right?” My heart sank to think that Grace felt this way, while also feeling relief because I finally knew what had been bothering her all this time.
What can we do to help?
If your child with Autism struggles to share their ideas, thoughts, wants, or needs, here are a few ideas to help…
One of the greatest challenges in parenting a child with Autism Spectrum Disorders is the struggle with communication. However, with persistence, patience, and love, it is possible to effectively support our children while helping them find their voice.
When you hear the word IEP, what do you think? A bunch of fancy words that you don't understand? Another opportunity to hear about how well your child is not doing at school? Do not fear fellow special needs families. There is HOPE!
When I hear the word IEP (Individual Education Program), I think "Here is a great opportunity to develop and monitor a plan specifically for my child's success!" Now where, you may ask, does my optimism come from? Well, after twenty years of working in special education in the public school system and five years of attending IEP meetings for my own child, I have learned a few things. Let me share a few tips with you...
1. Start with the end in mind.
Remember that the ultimate purpose of your child's IEP is to prepare them for "further education, employment, and independent living”. Even as early as preschool, we need to keep this in mind as we develop goals and plan for the future.
2. Document, document, document.
As quoted by one of the leading authorities on special education law and advocacy, "if it isn't written down, it didn't happen" (Pete Wright, wrightslaw.com). Documenting your conversations and concerns is the best way to keep IEP teams accountable. In addition, this will help you to streamline your efforts in monitoring progress and may save your sanity. For example, when you pick up your child from school and chat briefly with your child's teacher about a problem behavior that arose that day, you may want to follow up with a quick email to recap the conversation. If the behavior becomes a recurring issue, you'll have documentation to review to help you help your team in developing smart solutions.
3. Don't go it alone!
If at all possible, always attend an IEP meeting with someone. The law allows you to invite individuals who have knowledge or special expertise about your child. As the parent, you get to decide who meets this criteria. You may invite one of your child's private therapists, your Regional Center case worker, or your parent as an example. Having another set of eyes and ears present at an IEP meeting relieves you of pressure and allows you the freedom to listen and absorb the information.
So, the next time you hear the term IEP, don't be afraid. Remember that an IEP is an excellent opportunity for you to make a positive impact on your child's academic progress. Document everything as much as possible and enlist your support network for assistance.
References: https://sites.ed.gov/idea, wrightslaw.com, understood.org
In 1943, Dr. Leo Kanner first described Autism as related to children in the U.S. At the same time, Austrian pediatrician Hans Asperger was working with and learning from children in his country. Asperger's syndrome (referred to as a milder form of Autism) was named after him.
From that time until now, much has been discovered about Autism Spectrum Disorders (ASD). However, myths continue to surround this condition which adversely impact children and families. Let's discuss and hopefully dispel three myths related to Autism...
1. Girls don't have Autism...
So, as the proud parent of a wonderful young lady with Autism, I must say that this is definitely a myth. However it is true that statistically, boys are more often diagnosed with Autism when compared to girls. The ratio is about 4.5:1.
Another factor impacting girls is severity of impact. Girls with more significant challenges (very limited speech, multiple repetitive behaviors, obvious behavior differences) are usually diagnosed as young children. However, girls with "high-functioning" Autism or "Asperger's syndrome" may not be identified until their teen or adult years. Why, you might ask? Likely because some symptoms of Autism are overlooked in girls as they may be seen as "typical girl behavior" if not investigated in depth. These include: allowing other girls to guide and speak for her at school, being quiet/shy, passivity in group settings, separation anxiety and limited conversation skills.
2. All individuals with Autism have a special skill...
If you are 40 or older, then you'll probably remember the 1980's movie Rain Man starring Dustin Hoffman. This was one of the first U.S. movies bringing attention to Autism. However, as a result I believe that it has also perpetuated the myth that all individuals with Autism have a special gift, a savant-like quality that comes naturally without any formal training. Maybe phenomenal piano skills or the ability to memorize maps instantly.
Here is what research suggests: Only 10% of individuals with Autism have some savant abilities as compared to only 1% of the general population without Autism. These abilities range from “splinter skills” to superb savant skills. Typically, these skills are seen in math calculations, memory, art or musical ability. In our experience, our daughter has an amazing memory. She can remember events, names of people and experiences from long ago that most of us in the family have forgotten. However, I would say that this is a "splinter skill" and not a true savant-like ability.
3. Individuals with Autism do not like to engage with others...
It is true that individuals with Autism often prefer solitary play and struggle to interact with others at the same level as their "neuro-typical" peers. We noticed this early on in our daughter "Amazing Grace". At age three, she would easily spend time playing by herself and would not seek interaction with us, except when she had a need (such as food or toileting).
However, although the amount and quality of their engagement is definitely different, I believe that most individuals with Autism do have an interest in social interaction. Two factors that impact their engagement with others are 1. special/restricted interests and 2. limited perspective taking skills.
First, individuals with Autism typically have an area of special interest that takes much of their thought and energy. These interests may result in limited time or energy available for engaging with others. Also, the individual with Autism may find it as a "waste of time" to interact with those who don't share their special interest. This does not mean that they do not want friends or social interactions. It just means that they would prefer it on their terms so that the interactions are meaningful.
Theory of mind or "perspective-taking" skills also impact an autistic individual's ability to interact with others. If you have difficulty understanding what people are thinking and why, then interacting with them can be very challenging and overwhelming. As a result, many individuals with Autism shy away from social interactions for fear of not understanding something or making a mistake.
Let's erase Autism myths...let's support children and families with early identification, intervention and most of all, acceptance. Thanks for reading and sharing!
Interactive Autism Network (www.iancommunity.org); Roger Ebert's review of Rain Man (https://www.rogerebert.com/); Autism Research Institute (https://www.autism.com/)
Have you had "the talk" with your child? I am referring to a discussion about your child having Autism 😉. Many Autism parents like myself begin to contemplate having "the talk" as our children enter the mid years of elementary school. Others wait until adolescence or young adulthood. Let's briefly discuss the pros and cons...
Disclosing to your child can be empowering for them. It can help them make sense of their known strengths and challenges. Disclosure can also support your parent/child relationship. Many individuals diagnosed with Autism as adults report feeling resentful towards their parents initially because their parents did not address the issue early on.
Disclosure could initially evoke feelings of fear, anger or sadness. Also, older children could begin to use the diagnosis as an excuse for certain behaviors.
As you already know, each child with Autism is an awesome individual, to say the least. That being said, what works for one child or family may not work for yours. As you contemplate talking to your child about Autism, be encouraged! Trust your gut and make the decisions that work best for your child/family. Remember that clinicians and fellow Autism parents like myself are here to assist. Feel free to reach out for more information...
References: Indiana Resource Center for Autism (www.iidc.indiana.edu)
Crystal Sanford, M.Ed., M.A. CCC-SLP is an Educational Consultant, Autism/IEP Advocate and Speech Pathologist. Her passion is advocating STRONG alongside fellow Autism moms, helping them to persistently pursue what's best for their children at school. In her free time, she enjoys gardening and spending time with her husband and two children in San Diego, CA.