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)
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.
As a parent of a child with Autism, I know that we are always searching for a support, resource or strategy to help our children become the best they can be. Have you. like me, considered making dietary changes to help your child? Let's dive into the research and learn more about this topic...
First of all, we must all remember that each individual with Autism is truly unique. So, what works for someone else's child may or may not work for your child. Most experts recommend a strict trial of at least three months in order to determine if a special diet will help your child. If there are no improvements after three months, you can feel secure that you have made a good effort without a major financial investment.
Popular diets for individuals with Autism include:
The Gluten-free diet has been studied the most for individuals with Autism. However, more research is needed to statistically confirm the benefits. It is believed that the breakdown by-products of gluten and casein (peptides) may interact with opiod receptors in the brain, either causing or significantly increasing autistic behaviors. Studies have also shown that there are increased food antibodies (IgG and anticasein antibodies) in a subset of children with Autism who have co-existing gastrointestinal issues. Although this suggests a "gut-brain" interaction, researchers can't yet confirm the direction of this interaction.
Surprisingly, gluten can currently be found in a myriad of products in the U.S. Examples of food products include: bread, cereal, pasta, cake and donuts. But, did you know that gluten can be found in many non-food products as well? Examples include: lipsticks, toothpaste, stickers, detergents and sunscreen. This is definitely something to consider when making the choice to trial a gluten-free diet.
The Feingold Program is also a popular diet for children with a variety of learning and behavioral differences, including Autism and ADHD. In 1965, Dr. Ben Feingold began his studies of the link between certain foods and additives and their effect on some individuals’ behavior and ability to learn. The Feingold Program is a form of elimination diet where foods containing certain harmful additives are removed and replaced with similar foods that are free of those additives. When starting the Program, certain foods and non-food items containing an aspirin-like chemical called salicylate are also eliminated, and later tested for tolerance.
The best recommendation again is to know your child, trial changes consistently for a short time and monitor for any benefits or side effects. It is also best to work with an experienced nutritionist, dietitian, or clinician if possible with experience in Autism.
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
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.