Hi, I’m Crystal, the owner of the Sanford Autism Advocacy Group, LLC (SAAG)! If you’re wondering who we are, let me tell you a story that might give you a glimpse into the SAAG team and family…
 
I met a mom recently at a networking event, specifically for women in my town. We were all there to share about our businesses, make connections, etc. At the end of our final table rotation, one woman who had heard me share about SAAG recommended that I speak to another woman at the event...let's just call her Jane. She said that Jane was concerned about her daughter.
 
In speaking with Jane, she shared that her daughter was three years old. Her daughter wasn’t speaking yet. Actually, she was only saying sounds…not even words. She also had “ticks” as Jane described. Given these concerns, my mind went right to Autism, given the current prevalence rate of 1:36 children being identified as somewhere on the spectrum by age eight. So, I asked Jane if she had investigated her concerns for her daughter with a doctor or anyone in the community.
 
Jane said “No…I’m scared.” She began to cry. Was she scared to find out that something might be “wrong” with her daughter? That’s the feeling that she exuded through her tears.
 
I immediately looked Jane in the eyes and reassured her that her daughter was amazing and had many gifts, even though I had never met her. It’s true because at SAAG we believe that all children are uniquely gifted to do amazing things in the world. They just need the right supports, resources, and people who believe in them.
 
Jane agreed and said that her daughter was smart and creative, etc. Yet, you could tell that Jane was still very concerned. She apparently had an older son who was eight, playing baseball, and doing well in school. So, she had no specific idea what might be going on for her daughter. Yet, Jane’s gut told her that something was "different" and that her daughter needed support in some way.
 
As our conversation continued, I added that a “label” or a diagnosis (if that was the case) would not take anything away from who her daughter was. But it could open the door to potential resources, therapies, etc. as well as a better understanding of how uniquely designed her daughter was. 
 
Jane smiled and nodded as her tears lessened. Later I gave her one of my books. She asked for a hug, which I also gave willingly. Hopefully she left this interaction with…HOPE!
 
At SAAG, this is why we do what we do. We get you because we ARE you. We’ve either been down the exact road that you are traveling, or we have held the hand of those close to us on this journey.
 
We get up every day…stepping away from our own lives, challenges, questions, aspirations, etc. to step into the lives of neurodivergent families and offer them HOPE.
 
If you are in need of help in any way, we’d be honored to be your tour guide along your Autism and/or IEP journey. We’re only an email, call, or text away…

If you are parenting a nonverbal or minimally-speaking autistic student, then you may have concerns or questions about their education. Are they being challenged enough? Why does their IEP have the same goals year after year?

Our guest, Heather Anderson from theautismoasis.com, had the same questions during the Covid school closures. This prompted her to develop her Nonverbal Autism Homeschool Program. We had the pleasure of interviewing her in 2021, and now her program has now grown to support over 200 families. 

Check out this interview to learn about...

• Presuming competence for our nonverbal students
• Differentiating the instruction so your child can "show what they know"
• and much, much, more!

You got this families!

Are you struggling with screen time limits for your child? Need help? Learn practical tips from digital wellness expert, Nicole Rawson (https://www.screentimeclinic.com).

Current research shows that children engaging with social media are more likely to develop challenges, including OCD (obsessive compulsive disorder) and more. Even 30 minutes daily of screen time can have a significant impact our a child's communication skills, learning, and social-emotional wellbeing. 

• Try swaps such as playing games, cooking, reading.
• Avoid trying to "convince" your child to reduce digital usage; instead share this as a new family expectation.
• Be ready for a messy house, potentially filled with good chaos, when kids unplug.

Check out our video/audio to learn more...You got this families!

I’m looking at options for my son who will attend middle school next year. I’m having some uncomfortable flashbacks of what it felt like to look for preschools and later elementary schools. Somehow every transition to the next grade span is extremely difficult when you have a child with special needs! Why does it have to be this much work and so mentally draining?
 
Most typical parents will say, “It is hard for us too.” But when you have a special needs learner you have fewer options. Many people ask me, “Why don’t you send your kids to private school?” They are usually quite surprised when I tell them private schools don’t have to take kids with special needs. They can legally say no to you just because you need support. I have heard the “We don’t take kids like yours/IEPs/special needs” lines a few times already this year. Why does it sting so much even though I already know they don’t have to take us? Seems unfair especially in this climate when equity is discussed daily. Does equity cover us? If not, why? 
 
In some ways I understand that private schools don’t have the resources but what I really want these administrators to say to families like mine is this: “We would love to give your child a chance. Can we assess him and see if this is a fit? Can we try for a week and then decide if this placement would work for all?” I am hoping for some decency here. And somehow these administrators don’t have decency or the class it takes to be kind. One woman actually said to me after I told her my son had an IEP, “Do you even want to do the tour, since we won’t take you?”   I took the tour because of her insensitive comments.  
 
The sad reality is that some administrators just look the other way once you mention the words “special needs.” It still hurts to see this behavior even though I’ve become quite tough over the years. But I still want to crawl back into my fetal position when I get home and to feel that rejection alone in my bedroom. I work through the initial bitterness and then I pick myself up, smile at my beautiful children as though nothing has happened and I put some French fries and chicken nuggets into the oven. I don’t share these feelings with them because it is simply too painful and I see no good that could come from it.  They are young and preserving their confidence and innocence is always important to me.  Confident children do perform better in the classroom.  I take the hit for the team. “Keep going, Melanie. You will find a place for them to belong.” 
 
I hate having to work this hard at something I consider so basic.  Fundamentally I do get angry because this takes so much energy.  Why do I have to search so hard to find a place for my children to belong? They happen to be incredible and capable learners.  If I didn’t tell you he has autism or that she has dyslexia you might never guess. Meeting their needs is quite easy if you know how to teach and differentiate instruction.
 
Some people say, “Don’t tell the school about their special needs.” Why should I have to lie about their needs? I wouldn’t even consider this option because that sends the message that having special needs is something to be ashamed of. We are proud of our son. We are proud of our daughter. And they both have special needs. We will not be ashamed of how our brains work. I will continue to teach them that they are perfect just the way they are. Actually, everyone’s brain learns differently. Yet we all have valuable contributions to make in a classroom. 
 
One of the biggest problems facing educators and schools is this: they don’t want to differentiate. They want a one size fits all approach and they expect you to fit into their one way or else hit the highway. This is especially true for private schools.  Why do we accept this as a society? Why don’t we say, “No, one size does not fit all.” The only answer I can come up with is parents are afraid. They are afraid someone will reject their child. No one wants their child to be rejected. So no one says anything out of fear. It’s a terrible cycle of failing our children!
 
I talk to special needs parents often. I try to be a supportive community member and my goal is always to be inclusive of all. Inclusion has always been important to me because I was once a teacher and I understand the beauty of creating a rich, diverse class community. I understand the importance of making everyone feel needed. Students perform better if they feel needed in their classrooms. I have seen this firsthand. I purposely made the weakest reader in the classroom the leader in a group. Kids don’t expect this and are often shocked by this decision. “He looks like a strong leader. I choose B.” Not surprisingly, B became the strongest leader. Why does this happen? It happens because we allow it to happen. Kids step up to the opportunities we give them. They shine when we believe in them.
 
I struggle now because I am searching for a school that will say these words to me and I have yet to find it. “We want to get to know your child. We want to assess him and see what he knows and what he still needs help with. We want to meet your child and find out what his learning style is and how his brain learns best. We are excited to hear about your son. Tell us what makes him happy.”
 
Does this kind of school or administrator exist? I am hopeful it does and I won’t stop looking until I find it. I will find a place that sends this message to our family: “Welcome. Tell us about you. You are needed here.” 
 
Every child all over the globe deserves to feel needed, wanted and included in their classroom. And we should hire educators and administrators who say, we want to meet your child wherever they are on this educational journey. No matter where you are, we will embrace you and we will help your child improve. And it shouldn’t cost $20,000 USD.

Is your child struggling more than ever with turn taking skills, engaging with others, friendship skills, etc.? Do you worry about your child's social skills taking a dive due to school closures and pandemic quarantines? Well, you are not along special families. 

In our recent interview with Dr. Katherine McKernan, SLPD, M.A. CCC-SLP,  we learned three tips to supporting our children's social skills at home: 

1. Set Goals: Be specific. What do you want your child to be more successful with? Involve older children in this goal setting process.

2. Use Self-Talk: A naturalistic strategy that can be used all day long. Talk out loud about your own thoughts, feelings, and decisions as related to the goal that you're focusing on with your child.

3. Normalize all Feelings: Sometimes children with social language challenges experience their feelings more often or more intensely. Help them to understand that all feelings are okay.  

Want to learn more? Check out the latest episode of our video podcast, Thriving Special Families, available on YouTube and Facebook Live...

​Audio Only Version:
​

For more information, contact Dr. Katherine McKernan, SLPD, M.A. CCC-SLP, North Star Speech and Language Pathology Center. 

If IEPs were winding off-ramps on the road to education for special needs families, following them now in the time of Distance Learning requires an even better GPS and attention to new road signs.
  
Parents and IDEA: Power in the Law
Individuals with Disabilities Education Act (IDEA 1975) is the federal law that mandates special education services and rights for children with unique needs in the U.S. and their parents. IDEA calls for a Free and Appropriate Education (FAPE) in the Least Restrictive Environment (LRE). In California, we also follow the guidelines set out by the California Department of Education (CDE) and the California Education Code (CEC). The IEP is both a plan and a process to provide a child with resources to address their unique needs at school based on IDEA and the California Education Code.
 
What are your rights as parents of children with special needs?
Under IDEA and the California Education Code, parents have been provided a host of rights (i.e. Procedural Safeguards) including these:

• The right to receive Prior Written Notice (PWN) of services and changes to services;
• The right to consent or refuse consent to services;
• The right to request Compensatory Education (Comp Ed.) if they believe and can document that their child has experienced a significant loss of skills and learning (based on case law only: Supreme Court cases).

 
Distance Learning (DL), IEPs & Compensatory Education Services
During the 2020-21 school year, schools may offer a variety of education options including on-campus learning, Distance Learning (DL) only, or a hybrid of both learning options.
 
Did you know that parent’s right and FAPE currently remain intact during times of Distance Learning? Here are more important factors to consider regarding DL …

• Case law suggests that a child with an IEP may be provided with Compensatory Education services to cover any loss of services to bring a child back to the same position he or she would have been in had the services been provided (case law 2005).  This loss may be due to school negligence or not, such as services lost during DL.
• During DL, IEP teams should work together with parents to determine present levels of academic and functional performance (PLAFP).  If significant regression is evident or if the achievement gap has widened, then Comp Ed. services may be warranted.
• Basic Comp Ed. services include increased basic service hours, one-to-one instruction with the General Education teacher, etc.
• If IEP teams are unsuccessful in resolving Comp. Ed. concerns at the IEP table, parents may consider other methods of resolution (i.e., resolution meetings, filing a complaint, due process hearing, etc.).
• If awarded, more extensive Comp. Ed. services may include private tutoring, private special education services, etc.

 
Parent’s Documentation during Distance Learning (DL)
What should parents document?

• Delays in IEP meetings
• Amount of time provided by related service providers (weekly or biweekly)
• Implementation of accommodations (how implemented, timeline, etc.)
• Student progress toward goals as seen at home

 
How should parents document?

• Take screenshots of student work uploaded online (ex: Seesaw, etc.).
• Videotape student's attention to task and/or off-task behaviors
• Videotape student reading aloud each month
• Keep written log of phone/email contact with IEP team, etc.

 
Parent Tips for Distance Learning

• Request training on how to implement goals and accommodations at home (i.e., during teacher office hours, etc.).
• Request pencil/paper tasks for students who have challenges engaging via online learning (ex: Zoom meetings, etc.)
• Present information using your child’s learning style (kinesthetic, auditory, visual, combination). Ask for examples, tools, and resources showing how to present content in your child’s learning style.

 
Final Thoughts…
If your child is engaging in any level of distance learning:  document, document, document! Also, remember to focus on maintaining and/or working toward grade level skills in reading and math. For many students, Distance Learning is not the time to  attempt to move kids beyond grade level. Just focus on the basics. Resources to assist include:

• Lexia Core5 (lexiaforhome.com), PK-5th grade, reading/math
• Lexia Powerup (for non-proficient readers grades 6+)
• Khan Academy (free, khanacademy.org)
• Read Theory (free, readtheory.org), reading comprehension

• NonVerbal Autism Tutor program (theautismoasis.com), ages 7-13

 
Lastly parents, be cautious in refusing your school’s offer of instruction, no matter how poor. This may hinder your ability to consider and be found eligible for Comp Education services in the future. Feel free to contact us with any questions. We are here to help fellow special families!

Thank you to Betsy Hamblin of San Diego, CA who often serves as the  writing consultant at Sanford Autism Consulting.

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!
 
 
References:

• https://www.apa.org/helpcenter/road-resilience
• https://greatergood.berkeley.edu/article/item/how to build a resilient family when your child has developmental differenc
• https://www.newyorker.com/science/mariakonnikkova/the-secret-formula-for-resilience
• https://www.disabilityscoop.com/200911/10/autism-moms-stress/6121
•  Book: Wrightslaw:  From Emotions to Advocacy (2nd Edition):  The Special Education Survival Guide, by Wright & Wright
• Songs:  Don’t Worry, Be Happy, by Bobby McFerrin; “An Attitude of Gratitude” by Jimmy Buffett

​
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.)
 

• Difficulty interpreting the thoughts, feelings, and motives of others

 

• Separation anxiety (beyond toddlerhood, when away from her family or preferred adults/peers)

 

• Speaks in monologue instead of engaging in a dialogue with the listener

 

• Average to above average vocabulary

 

• Superb long-term memory, yet poor short-term memory

 

• Hypersensitivity to specific foods, textures, and/or sounds

 

• May appear moody, sensitive, or depressed

 

• May have "meltdowns" or becomes upset when things happen outside of routine or schedule

​
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:

• Level 1: Requiring Support
• Level 2: Requiring Substantial Support
• Level 3: Requiring Very Substantial Support

This severity information should be evaluated and included in any medical diagnosis of ASD. 
 
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.