What is FASD?

According to FASD United—the national voice on Fetal Alcohol Spectrum Disorders—FASD is an umbrella term describing the range of effects that can occur when an individual is prenatally exposed to alcohol. These effects may include physical, mental, behavioral, and/or learning disabilities with lifelong implications. The term FASD is not intended for use as a clinical diagnosis. 

Four diagnoses under the umbrella term of Fetal Alcohol Spectrum Disorder are:

 

• • Fetal Alcohol Syndrome (FAS)

• • Partial Fetal Alcohol Syndrome (pFAS)

• • Alcohol-Related Neurobehavioral Disorder (ARND)

• • Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE)

For a full breakdown of the diagnostic criteria for each umbrella term, click here. 

How Does FASD Occur?

FASD occurs when a developing baby is exposed to alcohol in the womb. Research indicates there is no safe amount, time, or type of alcohol to consume during pregnancy. 

Alcohol is a teratogen—an agent which causes malformation of an embryo. When a baby is exposed to alcohol in the womb, the toxin alters and kills cells. The structure and function of the developing brain are affected when alcohol is consumed prenatally. 

Contrary to popular assumption, FASD does not just affect children born to alcoholic mothers. Most women discover they’re pregnant between four to seven weeks gestation. The baby’s central nervous system (brain and spinal cord), limbs, and facial features are forming during this crucial time. The developing baby can be affected if an expectant mom only drinks socially during this crucial time.

Symptoms of FASD

FASD is an invisible brain-based condition with behavioral symptoms. Not everyone prenatally exposed to alcohol will exhibit all the symptoms and, other than the facial features accompanying FAS, the symptoms are not unique to FASD. 

As a facilitator of the FASCETS Neurobehavioral Model, I will utilize this model to unpack the symptoms of FASD.

Before we dive into the primary, secondary, and tertiary characteristics, it’s important to note the facial features associated with FASD—smooth philtrum, thin upper lip, small palpebral fissures (horizontal eye opening)—occur only in a small percentage of the population. Alcohol exposure would have to occur during days 15-18 of gestation for the anomalies to be present. The vast majority of prenatally exposed individuals will not exhibit the facial features making them more at risk for misdiagnosis and ultimately poor outcomes since their disability is virtually invisible.

Primary Symptoms and Definitions

 

• • Dysmaturity

• • Nutrition Problems

• • Slower Processing Pace

• • Abstract Thinking Difficulties

• • Sensory System Challenges

• • Language & Communication Problems

• • Learning & Memory Difficulties 

• • Executive Function Deficits 

• • Strengths

Dysmaturity

Dysmaturity refers to a person’s developmental level of functioning. People with FASD often present much younger developmentally than their chronological age.

Nutrition Problems 

Nutrition problems can range from a person wanting to eat often because they don’t recognize they’re full to not eating enough because they don’t recognize hunger. Intense sugar cravings are also quite common.

Slower Processing Pace

Individuals with a slower processing pace tend to respond slowly to auditory input. When asked a question, they might respond, “What?” or “I don’t know,” then moments later offer an answer. Their brain needs extra time to think and respond. These individuals often miss much of what was said when presented with a barrage of verbal words or multistep instructions.

Abstract Concepts

Abstract concepts are intangible thoughts and concepts such as understanding and managing time and money. People with an FASD tend to be concrete thinkers and have difficulty grasping these important life skills.

Sensory Systems Challenges

Sensory systems challenges can present as high sensitivity to lights, sounds, or smells. These individuals can be easily over-stimulated and have trouble falling or staying asleep. Either over-sensitivity or under-sensitivity to touch is quite common.

Language and Communication

Language and communication are challenging as the individual often talks better than they understand. They struggle with reading body language and can have trouble articulating their own feelings or comprehending the feelings of others. 

Learning and Memory Difficulties

These individuals struggle with learning and memory difficulties. Multi-tasking is difficult, and they may only remember one step out of multiple-step directions. They need to be retaught repeatedly and often have trouble learning from past experiences. 

Executive Function

Executive function is the set of skills responsible for organizing, planning, transitioning, focusing, generalizing, and controlling impulses. This “boss of the brain” is highly impacted by prenatal exposure to alcohol. 

In her book Trying Differently Rather Than Harder, author Diane Malbin, M.S.W., includes strengths as a primary characteristic. Individuals with FASD are reminded daily of their deficits, but encouraging their strengths can help improve their self-esteem. God created each person with unique gifts and talents—including people with developmental disabilities.

Secondary Symptoms of FASD

When FASD is not understood, is undiagnosed or misdiagnosed, and primary characteristics go unrecognized (or viewed as willful disobedience)—the individual suffers. They experience feelings of frustration and failure because they can’t meet the expectations placed upon them. Over time, the stress caused by trying to force a round peg into a square hole can lead to secondary behavioral symptoms.

Secondary Behavioral Symptoms:

 

• • Frustration

• • Short fuse

• • Anxiety

• • Agitation 

• • Withdrawn

• • Isolation

• • Depression

These defensive behaviors can develop when there is a gap between what the individual is expected to do and what they are able to do. These symptoms are not exclusive to FASD, but if an underlying brain-based condition is unknown (invisible) and therefore unsupported, then these visible behaviors could be the result. 

Tertiary Symptoms of FASD

If, over time, primary characteristics and secondary symptoms are not understood, supported, or accommodated, tertiary symptoms can occur. These symptoms are the net result of a chronic poor fit as the individual struggles with ongoing feelings of failure, isolation, and alienation.

Tertiary Symptoms:

 

• • Trouble in school

• • Social Services involvement

• • Justice System involvement

• • Homelessness

• • Addictions

• • Mental Health issues

• • Suicide

However, if the individual is adequately supported, negative outcomes can be avoided or reduced. Focusing on the person’s strengths and learning style while encouraging and incorporating their interests across environments can bolster their self-esteem and increase motivation. At the same time, areas where the individual struggles (see Primary Characteristics) must be accommodated just as accommodations would be implemented for anyone with a visible disability. 

Secondary and Tertiary Symptoms are not guaranteed consequences. Accurate identification and strengths-based accommodations can prevent, reduce, or resolve these outcomes.

Overlapping Diagnosis

Individuals prenatally exposed to alcohol often carry an alphabet soup of diagnoses, such as:

 

• • ADHD – Attention-deficit/hyperactivity disorder

• • ODD – Oppositional defiant disorder

• • RAD – Reactive Attachment Disorder

• • ASD – Autism spectrum disorder

• • PTSD – Post-traumatic stress disorder

• • LD – learning disabled

Most prenatally exposed children have an ADHD diagnosis. Because FASD is invisible with behavioral symptoms, the behaviors often lead to an ODD diagnosis. A vast number of adopted and foster children have undiagnosed FASD, but all have experienced trauma, and many struggle with attachment issues leading to PTSD and/or RAD diagnoses. There is a 100% overlap between the neurobehavioral symptoms of Autism and FASD with executive function and social skills being the main differences. And learning challenges due to the primary symptoms of FASD mentioned above could explain the LD label.

While some or all of these brain-based conditions could be accurate, the fragmented pieces may more clearly come together through the lens of FASD.

Why Is It Difficult To Get an FASD Diagnosis?

As mentioned above, a majority of individuals prenatally exposed to alcohol are either undiagnosed or misdiagnosed. Why are medical providers not diagnosing this leading preventable developmental disability? 

Dr. Christie Petrenko, Ph.D. Research Associate Professor and Director of Clinical Training, Dept. of Psychology, at Hope Family Center—an affiliate of the University of Rochester in NY—points to the lack of training. “The biggest challenge is that there are so few providers who feel competent to make this diagnosis. Providers don’t routinely get training in FASD as part of their professional education. Stigma and general community awareness of FASD are major barriers to change,” states Petrenko. 

In addition to the lack of FASD education in medical school and residency, Dr. Douglas Waite, MD, FAAP of Developmental/Behavioral Pediatrics at BronxCare Health System, Bronx, NY, points to the following:

 

• • Past emphasis on the need for a multi-disciplinary team to diagnose FASD. These teams tend to be federally funded and are few in number nationwide.

• • Need for documentation of prenatal alcohol exposure for all FASDs other than FAS.

• • Stigma associated with alcohol use during pregnancy and reluctance of women to disclose alcohol use during pregnancy.

• • Fear of stigmatizing a child by an FASD diagnosis. 

Why Is an FASD Diagnosis Important?

Dr. Petrenko states, “An FASD diagnosis offers understanding of complex symptoms often misunderstood and ineffectively treated. It helps individuals with FASD and their families connect with others with lived experiences and provides new ideas for supports and services. Research also shows diagnosis, especially early, can help reduce adverse outcomes, including placement breakdowns, trouble with the law, confinement in mental health or justice system settings, and substance use. Importantly, individuals with FASD share that a diagnosis provides them relief and an understanding of their strengths and needs. It helps them become more effective self-advocates and improves their quality of life.”

Whether or not a child has an FASD diagnosis, applying a brain-based approach to accommodations and supports at home and school will improve daily living. It can also prevent or reduce negative secondary and tertiary outcomes.

FASD as a Whole-Body Diagnosis

There is a lack of research on the long-term physical effects of prenatal alcohol exposure. However, the article Comorbidity of Fetal Alcohol Spectrum Disorder: A Systematic and Meta-Analysis published in The Lancet reports a higher prevalence of almost every health issue among the FASD population compared to the general population, including:

 

• • Congenital disorders

• • Cardiovascular 

• • Musculoskeletal 

• • Dental and oral health

• • Vision and hearing

The study’s results indicate the adverse effects of prenatal alcohol exposure on individuals across their lifespan. This is another reason why an FASD diagnosis is essential.

FASD as a Developmental Disability 

While in a general sense, Fetal Alcohol Spectrum Disorder is recognized federally as a developmental disability, according to Susan Shepard Carlson, Board Chair of FASD United, recognition has not trickled down to the states. “Contrast this with other disabilities, namely Autism and we can see a clear path to broader recognition. With the passage of Autism CARES act in 2014 and increases in funding in 2019, states received more guidance and funding to better support Autism as a covered waiver condition. No such legislation has been passed to date for FASD, leaving states without adequate funding or impetus to address it. Add to that, programs on FASD have only focused on research and prevention without any substantive programs mandated to support people living with this disability.”

While some states do mention FASD in disability services, the barrier exists with IQ requirements. Carlson reported, “Most people with FASD have an average to above average IQ, their disability lies in adaptive function—their ability to navigate the world and their community safely. States that rely heavily on IQ as a determine for FASD services create a barrier for those with FASD who still require supports and services.”

There is a national effort led by FASD United, its affiliate members, along with individuals with FASD and their families to pass federal legislation. The FASD Respect Act is legislation targeting services and recognition on a federal level. This bill, if passed, would provide funding to states to begin addressing FASD and supporting the people living with it. 

Difficulty Obtaining Services for Individuals with FASD

While there are programs that can support people with Fetal Alcohol Spectrum Disorder, they are not broadly in use in all states. Susan Shepard Carlson said, “…program supports and services that work with other disabilities may not be as effective with the FASD population.” Diagnostic capacity and awareness are true barriers to services, leaving individuals with FASD and their families to advocate for supports and services. 

Carlson added, “To support families and to begin addressing FASD, we need to balance our efforts at prevention with open conversations about FASD and the needs of people living with it. Without policy change on the federal level, states will continue to do as they have been for the last fifty years and will not address FASD in a meaningful way.”

Hope for Individuals With FASD and Their Families

Despite the symptoms of FASD, the prominence of this invisible disability, and the lack of diagnoses and supports, there is hope for struggling children and families. 

Individuals with FASD who receive strengths-based accommodations and supports—at home, school, and on the job—can lead successful lives. Many are employed as welders, construction workers, insurance claims investigators, and restaurant managers. Some become entrepreneurs. Some graduate college. Others get married and have families. There is no limit to what a person with FASD can achieve.

People with FASD can accomplish anything neuro-typical individuals can; they just require accommodations and the freedom to pursue their strengths to become all God created them to be. Parents and caregivers who are FASD-informed and equipped with brain-based parenting skills like the FASCETS Neurobehavioral Model are key to their child’s success. 

Homeschooling as an Accommodation

It is quite common for children with an FASD to thrive in the homeschool environment. In my personal experience, homeschooling can be an effective accommodation for a child struggling in school either academically, socially, or both. Home education allows the child to work at their own pace. When the child’s learning style, strengths, and interests are taken into consideration, they often flourish.

Whether the child is homeschooled or in school, they often require supports and services. Parents and caregivers should advocate for an IEP or 504 plan and ensure it is followed. My teenage son was homeschooled during elementary school. In junior high, he attended a public school special education classroom. He is homeschooled and attends a public school skills class as a high schooler. Throughout his education, he has had an IEP and receives speech therapy services at school.

A child’s learning style, strengths, and primary symptoms should always be considered. Parents and caregivers must advocate for and pursue schooling that best fits their child. While homeschooling a child with a brain-based disability may seem daunting, it is possible. Homeschooling can be an effective and enjoyable accommodation for both parent and child when a brain-based approach is utilized.

A Brain-Based Approach

Now we will explore a brain-based approach of applying accommodations and supports across systems for children prenatally exposed to alcohol. 

We’ve already established that Fetal Alcohol Spectrum Disorder is an invisible brain-based physical disability with behavioral symptoms. Therefore, providing accommodations for individuals with FASD is as crucial as for people with other physical disabilities. 

For example, when we see a person in a wheelchair, we understand they will need accommodations. Environments are equipped to accommodate a wheelchair user—ramps, removal of curbs, marked parking spaces, elevators, and modified restrooms.

Utilizing the FASCETS Neurobehavioral Model, we will consider how to apply person-specific accommodations for people with FASD. 

A task almost every parent or caregiver expects a child to do is clean their room. However, especially if your child was prenatally exposed to alcohol, there’s a good chance this is a source of contention in your household. Let’s consider what anyone’s brain would have to do to clean a room:

 

• • plan

• • organize

• • remember

• • make decisions 

• • prioritize

• • stay on task

• • filter distractions

• • manage sensory input

Considering the primary Symptoms of Fetal Alcohol Spectrum Disorder stated earlier, each brain task necessary for cleaning a room will be difficult for a person exposed to alcohol in the womb. 

Accommodations

Let’s consider what accommodations might be implemented to help a child accomplish the expected task of cleaning their room.

First, remember the primary Symptoms the child may struggle with. Let’s imagine a child who has difficulty planning, organizing, making decisions, and staying on task.  

Second, we must take into consideration the child’s developmental age. If the child is twelve chronologically but presents more like six developmentally, we set our expectations according to their developmental age. In other words, we change our expectations to match what a six-year-old can do. 

Next, consider the child’s strengths. What are they good at? Maybe this particular child is social and loves music. We will factor in these two strengths when deciding on accommodations. 

Since this child is social and performs better with one-on-one support, work together to co-clean the room. Due to their challenges with planning, organizing, decision-making, and staying on task, a parent or caregiver can provide guided support. Help them figure out where to start, what to do next, etc. Choices can be offered (what do you want to pick up first, the dirty laundry or the toys?). If making that decision is too overwhelming for the child, decide for them. 

Remembering that the child loves music, the parent can allow the child to choose music to listen to while cleaning the room together. By making it fun and providing support, the room will get cleaned and strengthen the relationship between caregiver and child.

Accommodations and Successful Outcomes

Setting accommodations based on the individual’s primary symptoms, developmental age, and strengths leads to more successful outcomes for the person across systems—home, school, and community. And often, the secondary and tertiary symptoms listed above can be avoided or reduced. Adjusting our expectations of what success really means is a vital step in this process.

The foundation of the brain-based approach is that since FASD is an invisible physical disability, providing accommodations for people with FASD (or other neurobehavioral conditions) is as appropriate, effective, and ethical as providing accommodations for people with different physical disabilities. 

Hope and a Future 

A majority of children in foster and adoptive placements are struggling due to an unknown and often undiagnosed disability. Sometimes this condition is the reason behind disrupted placements. Therefore, it is imperative for every parent, caregiver, and professional to be Fetal Alcohol Spectrum Disorder educated and equipped with brain-based parenting skills. When we are, we can join our child where they are and guide them to the hope and future God created for them.

The post Fetal Alcohol Spectrum Disorder (FASD): What Every Adoptive & Foster Parent Should Know appeared first on Focus on the Family.

Matthew 25:40 

And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.

Leviticus 19:14 

You shall not curse the deaf or put a stumbling block before the blind, but you shall fear your God: I am the Lord.

Deuteronomy 27:18

Cursed be anyone who misleads a blind man on the road. And all the people shall say, ‘Amen.’

Isaiah 42:16 

And I will lead the blind
in a way that they do not know,
in paths that they have not known
I will guide them.
I will turn the darkness before them into light,
the rough places into level ground.
These are the things I do,
and I do not forsake them.

Luke 14:12-14

He said also to the man who had invited him, “When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you. For you will be repaid at the resurrection of the just.”

Bible Verses Empowering Those with Unique Challenges

Romans 8:18

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

1 Corinthians 1:26-29 

Brothers, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things – and the things that are not – to nullify the things that are, so that no one may boast before him.

John 9:1-3

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.”

The post 11 Bible Verses On Helping Loved Ones With Special Needs appeared first on Focus on the Family.

When our family was invited to attend Focus on the Family’s “Live” event in Southern California this past November, we figured it would be a special evening.

Along with my wife, Melissa, and our son, Trevor – who has Down syndrome – I had previously enjoyed the privilege of visiting Focus on the Family for a broadcast taping about “Shining a Positive Light on Down Syndrome.” The Nov. 11 Orange County event was the first night of Focus’ five-city pro-life tour, and we would be in the audience this time, witnessing a live interview with Jim Daly, John Fuller and special guest Joni Eareckson Tada.

We have followed Joni’s incredible journey of faith, read her inspiring books and heard her pro-life message many times over the years. We knew that she became a quadriplegic as a young adult and has dedicated her life to supporting the disabled. Yet we had only admired her from afar. That night
we learned that the in-person Joni was more genuine than we ever imagined.

Trevor, Melissa and I first encountered Joni during the pre-event reception. Joni arrived soon after we did, and she quickly took notice of Trevor. Everyone parted to make room as her wheelchair quickly rolled over to where we were standing.

Joni, meet Trevor

“I’m Joni,” she said with a smile. “What’s your name?”

“I Trevor!” he replied.

“How old are you Trevor?”

“I 29!”

“Trevor,” Joni asked, “what brings you joy in life?”

“I love singing worship songs!” he said. “I work for Angels, Ducks, Rams and Trojans!”

“I love singing worship songs, too!” Joni said. “What do you do for those teams?”

I shared with Joni how Trevor was hired as the team store greeter by the Los Angeles Angels in 2012, the Anaheim Ducks in 2013, and the Los Angeles Rams and USC Trojans in 2018. I told her that over those
years, Trevor has become known, admired and often loved by tens of thousands of sports fans, fellow employees, team executives and professional athletes.

“Wow, I’m very impressed!” Joni said. “It’s been such a blessing to meet you, Trevor! I will continue to pray for you and that you continue to glorify God while you work.”

When I look at the photos we took of Joni and Trevor together that night, I can’t help but think about how both of them, in their own unique ways, are ambassadors for life: joyfully proclaim God’s message that every human being is incredibly precious, infinitely valuable and eternally significant.

Buoyed by his interaction with Joni, Trevor spent the rest of the evening meeting new people and engaging in conversation with one and all.

'Do You Love Life?'

‘Do you love life?’

Joni spoke passionately about pro-life issues that night. She shared with Jim and John how God created
all of us in His image, how we should treat people with disabilities with the utmost dignity, and how we should therefore continue to fight for the sanctity of all human life. She expressed great sorrow that babies diagnosed in the womb with Down syndrome are too often aborted because so many assume that they will bring little “value” to society and never experience a truly happy or fulfilling life.

Amazingly, she then addressed the crowd of several hundred people: “My new friend Trevor is here tonight. He’s 29 years old and has Down syndrome. Please stand up, Trevor.”

He stood up to great applause.

“Trevor,” Joni asked, are you happy?”

“Yes, I am!”

“Trevor, do you love your life?”

“Yes, I do!”

Joni turned back to the audience.

“Trevor,” she said, “like all people with disabilities, provides undeniable proof that every child is here for a reason … perhaps especially those the world thinks are imperfect. Thank you for being with us here tonight, Trevor!”

Our son sat down to even greater applause.

A Heart-breaking Statistic

I went on a men’s retreat a few years back where the visiting pastor challenged us, “Find out what breaks your heart, because that’s where God is calling you into ministry.”

Melissa and I taught Sunday school when all three of our sons were younger. I’ve spoken about drug and alcohol issues at college fraternities and led several Bible studies. We’ve fed the homeless on skid row
and sung Christmas carols at nursing homes. While these were all “good” things, they weren’t done out of a broken heart.

What breaks my heart is that 70% to 90% of preborn babies in the United States diagnosed with Down syndrome are aborted. Some European countries are even striving to be “Down-syndrome free.” In other countries, boys born with Down syndrome are sold into back-breaking slave labor; girls are sold into lives of prostitution. The potential fates of children who have Down syndrome are what break my heart.

We learned of a woman who was pregnant with a child who had Down syndrome. She was unsure of what to do at first, but after meeting Trevor she decided to carry her child to term.

One Stadium at a Time

We recognized that Trevor had some cool jobs with sports teams, but we started to wonder if there could be more to it. Perhaps we could try to replicate what Trevor does at other athletic venues around the country by by encouraging teams to hire individuals who have Down syndrome to work as greeters at their stadiums.

Maybe then, when a woman discovers she’s pregnant with a child who has Down syndrome, someone could tell her, “Before you do anything, go see ‘Tommy’ at the local stadium.” Or, “Say hello to ‘Susie’ at the local arena.” These ambassadors for life could lead to saving the lives of even more babies who have Down syndrome.

Two years ago, we formed nonprofit called Angels for Higher to promote the hiring of individuals with Down syndrome to work as greeters in sports stadiums, athletic venues and college campuses across the country – and eventually around the world. Angels for Higher has enjoyed success this past year as sports venues have come to appreciate how employing our greeters helps their brand, their business and their reputation in the community.

Along the way, Angels for Higher’s greeters joyfully demonstrate the message that every human being is incredibly precious, infinitely valuable and eternally significant in God’s sight. It’s our prayer to transform the pro-life, special needs culture of the world – one sports stadium at a time.

Like Joni said that night, we’re all here for a reason.

The post Joni and Trevor: Ambassadors for Life appeared first on Focus on the Family.

“Your child is on the spectrum – Asperger’s, Autism, 504, IEP.”  As these words swirled around me, all I could think was STOP!  I wasn’t given any time to process the news, much less understand and comprehend what all those words meant. Not even knowing about April being Autism Awareness Month or anything else, I just wanted the specialist to stop telling me all the worst cases scenarios and start telling me how I could support my grandson.

Autism journey and awareness

That day began a journey for my family and my grandson Tristin.  Twelve years ago, my husband and I were granted permanent custody of our granddaughter and grandson.  These amazing people came into our lives full-time. I can say it’s been a journey of joy, fun, challenge, heartache and love–sometimes all in the same day!  They came to us from an unsafe environment.  Shortly after Tristin came into our home, we knew he was struggling.  This little person was scared of going outside, scared of swimming and did not like being touched.  My heart broke every time I tried to do the “normal” things, and he resisted each and every time. Not being able to hold or cuddle Tristin was devasting.  I didn’t know how to soothe him. 

• What Parents Need to Know About Autism
• Caring for Adult Children With Autism (And How You Can Help)
• Raising Children on the Autism Spectrum

Advocate for Autism

Even though the diagnosis was a punch to the gut, it was my line in the sand. It drove me to become Tristin’s biggest advocate. I was and still am determined that he would not be defined by his disability.  Schooling was a challenge. Yet, he wanted so desperately to learn, play and belong. 

We had teachers tell me he couldn’t participate because he didn’t understand. Therefore, they would sit him in a corner.  I was furious, and the school became my lunchtime errand almost every day. However, we also had teachers that went above and beyond to challenge Tristin to do more. I am so thankful for those teachers. They saw my grandson as a person, not a disability! During those times, I watched Tristin grow and thrive!

One of his counselors would email me every week and give me little notes of encouragement:

I just wanted to let you know that Tristin is having a great day! He seems to be having a lot of fun. Every time I see him in the hallway, there are kids saying hi to him!  It has been awesome.

Each time I received a note like this, my grandma’s heart would burst with joy.  What a great reminder and awareness that our kids with autism need, crave and desire to be encouraged. 

Autism Awareness Education

I’m so thankful for the support we received from our specialists.  We learned so much during those first few months of PT, OT, and Speech Therapy.  Tristin responded so well to every therapy, and within six months, he was eating solids, running outside and being a “normal” boy.  You may ask why I add quotes to normal?  I don’t care for the word “normal.”

 Each of us has our own normal. As an advocate, everyone learns normal isn’t determined by a set of stats – but by each of those we serve. Learn who they are and love them just the way they are! Each of us is made in the image of God. “God created humanity in His own image. He created them male and female in the image of God.”  Genesis 1:27

Additional Resources:

• Seeing God Through My Son’s Autism (Part 1 of 1)
• Fighting for Joy as a Special Needs Parent
• Autism in Marriage

Autism Awareness Fact Sheet

There is so much still unknown about Autism and the cause of Autism, but I found an Autism Fact Sheet from the National Autism Association that I wanted to share.

What is Autism?

• Autism is a bio-neurological developmental disability that generally appears before the age of 3
• Autism impacts the brain’s normal development in social interaction, communication skills, and cognitive function. Individuals with Autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.
• Autism is diagnosed four times more often in boys than girls. Its prevalence is not affected by race, region, or socioeconomic status. Since Autism was first diagnosed in the U.S., the incidence has climbed to an alarming one in 54 children in the U.S.

Autism Facts and Stats

• Autism now affects 1 in 54 children; over half are classified as having an intellectual disability or borderline intellectual disability
• Boys are four times more likely to have autism than girls
• Autism greatly varies from person to person (no two people with Autism are alike)
• Autism is the fastest-growing developmental disorder, yet most underfunded
• Children with Autism do progress – early intervention is key
• Autism is treatable, not a hopeless condition

Autism Awareness Month

Autism Awareness Month is for All of Us

Has life been easy with Tristin–no. But worth it–YES. The day he initiated a hug was one of the best days of my life! He is kind, and he has a servant’s heart. We will see him graduate from high school in May. In addition, he will also have a certificate of completion for construction and will begin work in the summer. 

You may not have a child with Autism, but I’m sure you or your family know someone.  My challenge to you – get involved.  Learn how to support that family, teach your children to be kind and to be inclusive.  If you see a teacher going above and beyond, celebrate that! Leave them notes or a gift card; let them know they are seen and appreciated!

“Whatever you did for the least of these brothers of mine, you did for Me.” Matthew 25:40.

The post April is Autism Awareness Month appeared first on Focus on the Family.

Parenting a child with physical, developmental or mental-health disabilities can be one of the most rewarding experiences of your life. But it also can create intense strain in your marriage and test your faith. We know because our marriage barely survived after our daughter was released from the neonatal intensive care unit. We lived for several years in crisis mode as we began to manage her genetic disorder and care for her at home.

During this difficult time, we discovered some essential marriage principles that deepened our love for each other and strengthened our marriage. Our relationship became more resilient as we cared for our daughter. Here are four ways we grew closer during this trying time in our marriage.

1. Take Advantage of Short Respites

One of the most important habits we found to deepen our bond is spending regular time together. Still, leaving the house for a date night can feel impossible amid complicated circumstances. And retreating to the bedroom won’t shut out the noise and stress of caring for a child with special needs. We’ve found that if you want to carve out regular time together, you’ll have to think outside the box.

So instead of an evening out, we’d take a walk together or enjoy a picnic in the park. A friend or family member might care for our child for an hour or two. And we enjoyed taking short breaks as a couple that could offer reduced stress, a rejuvenated relationship and something to look forward to.

Finding outside support is also crucial. When someone told us about a three-hour respite program once a month at a local church, we were ecstatic. We looked forward to that break all month long.

Start with short respites: Plan a one- or two-hour break together that will get you out of the house this month. Answer these questions:

• “When will we go?”
• “Who will care for our child?”
• “What will we do?”

2. Share a Lighthearted Outlook

This might sound odd or trivial, since the day-to-day responsibilities of parenting a child with special needs are anything but lighthearted. It’s difficult not to take life seriously when your child’s development or health is on the line. But humor can help couples cope better while in the midst of caregiving stress. A lighthearted and cheerful outlook can also improve your mental health and help you feel closer to each other. We rejoice that a joyful heart is good medicine (Proverbs 17:22). In fact, laughter triggers chemical reactions that make us feel good and lower stress hormones.

Our daughter, Bethany Grace, has taught us to welcome each day with a joyous and lighthearted attitude no matter what’s happening. She proudly yells “woo-hoo” when she’s excited, and we’ve adopted her joyful spirit. Sometimes we’ll break out in a “woo-hoo” when just the two of us are together. This uplifting outlook is freeing and refreshing. Since we started celebrating and laughing more, we’re much happier as a couple.

Start being lighthearted: Find ways to add humor to your relationship. Share a joke, watch a funny movie together or celebrate small victories.

Find Joy While Parenting Children with Special Needs

3. Support and Validate Each Other

Validating each other’s emotions is essential in any marriage. We look to Proverbs 12:25 where it says that anxiety weighs us down, but a good word makes us glad. Couples caring for children with special needs often experience painful, overwhelming, and even traumatic events on a daily basis. Supporting and validating each other amid these challenges is critical.

As we struggled to manage the pressure cooker of caring for our daughter and balancing daily life, we found our own ways to cope and survive. When we needed each other most, there were times we couldn’t figure out how to connect or support each other. As the distance between us grew, we each felt the other person couldn’t understand what we were going through. Here’s how we each processed the challenging nature of our parenting:

• Todd: I went into a practical survival mode, focusing on work and the overwhelming day-to-day financial and household tasks. I disconnected emotionally because there was no time to feel or talk about feelings when there was so much to do.

• Kristin: I began to drown in my trauma and grief, as well as the stress of trying to keep my daughter alive. I felt like Todd didn’t care about my emotions or what I was going through, and I pulled away from him.

4. Offer Uplifting Words

Now, after years of counseling and fighting for our marriage, we finally learned how to validate each other’s painful experiences, thoughts and emotions. We began to reconnect and feel loved again. Simple affirmations such as “That sounds really hard” after a difficult doctor’s appointment or a taxing day helped each of us feel heard, understood and supported.

We also found that extending thoughtful phrases like these strengthened our marriage:

• “It makes sense that you’re feeling this way.”
• “I’m sorry you’re going through this.”
• “How can I help you?”
• “How can I pray for you?”
• “I know you’re doing your best. Thank you.”

Though you may not understand how your spouse feels, it’s important to communicate that you want to understand and that you believe what your spouse is sharing.

Start supporting each other emotionally: Post your own thoughtful phrases where you can see and read them each day. Then, as challenging situations arise, use them while you and your spouse are talking.

Over time, as you steal away for an hour or two together, share a joke and validate each other on challenging days, God will weave together your individual efforts to strengthen your marriage.

More on Parenting Children With Special Needs

• Special Needs and Marriage 
• Overcoming Guilt in the Face of Special Needs
• Experiencing God’s Grace in a Special Needs Family

The post Managing Marriage and Children With Special Needs appeared first on Focus on the Family.

Who said that autistic people are not people?

I have a son named Max. He’s 29 years old … he’s awesome … and he has a diagnosis of autism.
Nothing has been simple or easy in our lives, but God has made it beautiful.

I’ve been a single mom to Max for most of those 29 years, which means I drink a lot of coffee! It also means God has given me a beautiful perspective on life — on the value of every life.

Autistic people and the Church

One of my favorite things about Max is that he loves church. He fell in love with this one particular church service that airs on television. We’ve actually visited this church several times. It’s in Massachusetts, about 150 miles from our home. And every time we’re there, we’ve been blessed. On our last visit, we invited my friend Christine and her son, Christopher. Christopher is a little younger than Max, he also has autism, and he is blind.

We arrived at the church about 20 minutes before the service began. I told Christine, “We just have to go in. Max needs to get used to the environment. Plus, he’s too excited to stay outside!”

Sure enough, Max was bouncing up and down in the pew. He was so excited that, every now and then, he threw his hands up in the air and yelled, “We’re gonna sing God’s praises!” (Shouldn’t we all come into church like that?)

Well, there was a woman at the church wearing a bright blue shirt. I saw her get up and walk toward us. She leaned over to my friend Christine, nodded toward Max and said, “He doesn’t belong. I can’t think … can’t pray … Why can’t you just leave? He doesn’t belong.”

More Pro-Life Learning Resources:

• Pro-Life and Pro-Choice: What does it mean?
• Free Dignity of Human Life Toolbox

Don’t listen to the crowd

What happened in that church has nothing to do with any denomination. It doesn’t even have anything to do with this woman. It has everything to do with our common human condition.

There’s a story I love in Matthew 20. Jesus is leaving the city of Jericho, and He’s on His way to Jerusalem. There’s a crowd around Him. And He hears two blind beggars cry out to Him from the side of the road. And do you know what happens? Do you know what the crowd around Jesus does? The Bible says, “The crowd rebuked them, telling them to be silent” (Matthew 20:31).

The crowd’s message to those two men? You don’t have any value. Jesus doesn’t have time for you two disabled men on the side of the road. You don’t belong. And when the crowd tried to silence them, the two blind men cried out even louder to Jesus, knowing He was their only hope.

And then — this is the moment I love — Jesus stopped. With the crowd around Him and the Cross before Him, Jesus didn’t listen to the voices of the crowd. He listened to the two blind men crying out for Him. Jesus turned to those men and said, “What do you want me to do for you?”

They asked for their sight. Now, we know Jesus could have healed those men from a distance and gone on His mission, but He didn’t. He got close. Very close. He put His hands on their place of brokenness and brought them healing.

Jesus didn’t listen to the crowd. He stepped in.

Responding to “Autistic People Are Not People”

The voice of the crowd is loud today, isn’t it? Telling us which lives have value and which lives do not. Pushing people aside — the disabled, the elderly, the prisoner, the unborn, the unwanted, the disruptive, the inconvenient. We see it with assisted suicide. And we see it with abortion. We especially see it with selective abortion. The number of babies we abort who are diagnosed with Down syndrome is upward of 67 percent. We know it’s higher; we just don’t have the numbers to track it accurately.

What we saw last January in the state of New York should chill us to our core. A mother can now abort her baby at any point during her pregnancy. And when that legislation passed, well-dressed, well-spoken men and women rose to their feet and cheered.

It takes little imagination for me to know who is next. When Max was diagnosed with autism, it affected around one in 10,000, maybe four in 10,000. We just knew it was rare. Now the Centers for Disease Control and Prevention report that autism affects one in every 59 children, and a new federal study reports that it’s more like one in 40 children.

Autistic people are people too

God calls us, His church, to defend life. But I want to ask a hard question: Will the church be able to defend life if the church is not yet able to sit beside that very same life for an hour in the pew on Sunday morning?

I want to take you back to that little church in Massachusetts, where this woman in a bright blue shirt leaned over to my friend, saying of Max, “He doesn’t belong.”

I’m so thankful for the friend beside me that day. Even though this wasn’t our church, or even our denomination, we had an advocate — someone who saw Max’s value. My friend Christine looked up at this woman and said, “All are welcome.”

We stayed for that service, and I’m not sure they’ve ever seen worship quite that aerobic. Max was bouncing and singing at the top of his lungs. He had memorized the service, so when the priest softly uttered, “Peace be with you,” Max shouted out his response: “And also with you!”

At one point the priest, who was a very serious guy, just burst into laughter. Max’s joy was contagious.

Someone’s watching

When the service was over, I put my arms around Max and hugged him. I was so overwhelmed by God’s goodness, by God’s beauty in every life. And as I was hugging Max, I sensed someone watching me. I looked up, and it was the woman in the bright blue shirt … and she was smiling.

First Corinthians tells us that God has arranged the parts of the church body, every one of them, just as He wanted them to be, and “the parts of the body that seem to be weaker are indispensable”
(1 Corinthians 12:22). God places value in every life, and He calls His church to affirm that value.

The voices of the crowd are very loud these days, but Jesus didn’t listen to the crowd, and He doesn’t want us to, either.

The post Who Said That Autistic People Are Not People? appeared first on Focus on the Family.

I first became a foster parent in 2017. Somehow, someway, eight kids and four years later, I’m now writing an article on being involved in foster care as a special needs parent. Whether you are reading this because you want to be a foster parent or are a foster parent—or maybe you think the whole idea of fostering sounds awful—I encourage you to remember throughout reading my story that every child is made in the image of God. No matter the disability. No matter the diagnosis or list of appointments. Every child is made in God’s image. 

What Is Special Needs Foster Care

Before moving forward, I want to define “special needs.” In a way, every child in foster care is a child who has special needs. It takes a village to care for a child in foster care, including social workers, lawyers, judges, therapists, teachers, CASA workers, biological family, foster parents, and their network of support. I consider “special needs” to be a very broad term to encompass any physical, emotional, or behavioral difficulty needing intervention.

All eight of the children I have fostered have needed some level of outside help. I’ve had children in physical therapy, speech therapy, vision therapy, occupational therapy, and psychological therapy. I have navigated the waters of public schools and IEPs (Individualized Education Programs). I have spent dozens of nights in the hospital. And time does not allow me to count the number of doctor’s appointments I have been to. Stepping into the world of foster care also means stepping into the world of special needs.

Encouragement for a Special Needs Foster Parent

Rest easy if you are reading this and feel like you can barely pronounce your child’s diagnoses, let alone become an expert in caring for them. I felt the same way at first and still sometimes do. To the parent fostering a child with special needs, trust yourself. I doubted myself a lot in the beginning, but I’ve found God gives you just what you need to tackle each challenge as a special needs foster parent.

God placed this child in your home. Not with the foster mom on the Facebook foster parent group, not with the Instagram foster mom influencer—God placed the child with you. Trust and pray that God will equip you to handle each doctor’s appointment, each therapy appointment, and each IEP meeting.

The Importance of Organization and Collaboration

Not only did God place the child in your home, but He also placed that child with a certain social worker, a certain GAL (guardian ad litem), a certain team of therapists and doctors, and a certain biological family. Work as best and appropriately as you can with all the people God has placed in this child’s life.

Get used to answering unknown numbers and utilizing tools like Trello and Google Calendar to organize all the meetings and therapies. Make sure the child is being properly informed on what’s going on with their care and, when safe and appropriate, include biological families too.

The goal of foster care is safe permanency for a child, often through reunification, and that is true for children with special needs too. So, the ultimate goal is for you to organize the child’s team of caretakers well so that a biological family member can take your place without disrupting the appointments and therapies the child has if reunification occurs.

Caring For Yourself as You Care for a Child with Special Needs

If all this seems overwhelming, it’s because it is. I came to a point where, after four years and eight kids, I developed compassion fatigue or burnout or whatever fancy word you want to use. I was done.

Therapy is Self-Care

Self-care is important for all parents but downright critical for parents who have kids with special needs in foster care. If you are already a special needs foster parent, I’m going to give a piece of advice that I already know will make you roll your eyes because I did at first: enroll yourself in therapy. Breathe—I know you’re probably thinking, “Not one more appointment!” and “I’m not the one with special needs!”

I get it. I do. But one of the biggest parenting realizations I have had is this: Parenting is mostly about you. Don’t hear this the wrong way. What I am saying is parenting is not so much “How do I get my kids to behave?” but “How do I control my anger and impatience when my kids do misbehave?” Parenting a child with special needs is not so much “How do I juggle all my kid’s appointments?” but “How do I handle stress or things not going my way?”

Understanding Your Own Trauma and Triggers

Before you can help a child overcome their triggers, you first need to know and overcome your own. Before diving deep into a child’s trauma, you need to dive deep into your own. Self-care, in this instance, is not candles and bubble baths. I’m calling you to hard work.

For me, therapy has helped with little things like understanding that if I feel stressed, I need to use the acronym HALT. Am I Hungry? Angry? Lonely? Or Tried? I have also learned breathing exercises. But therapy has also uncovered deep pain, trauma, and hurt that I’ve had to work through so that I can be a better caregiver to my kids.

The Moment I Became a Special Needs Foster Parent

“I could find you an easier kid,” the social worker said on the other end of the phone. I was about a month into the hardest foster care case in terms of special needs I have had. On top of that, I was pregnant and sick too. This child had about five specialists and three therapies and counting. I remember a few nights before caring for her at 2 a.m. thinking, “I’m not sure I can do this anymore.” The social worker had called me that day to tell me the state had decided to make the child “medically fragile,” meaning I would have to go through an extra 12 hours of training, including a weekend conference plus an additional twelve hours for the initial training. I was at a crossroads.

Did I want an “easier kid”? Whatever that even means. “No,” I said. And at that moment, I felt more sure of my answer than any answer I have given except becoming a Christian. “I don’t want an easier child. I want her.” Two years and some days later, that little girl became my forever daughter.

It is worth it, friend. Every child is worth it.

The post Foster Care: Parenting Children With Special Needs appeared first on Focus on the Family.

Jim Daly: John, according to the last census, almost one in five families, one in five, that’s 20% in the US includes someone with a disability, ranging from autism to Alzheimer’s. Uh, that’s a significant number and so there are families who need hope, and they need help, and they need to know that they’re not invisible to the rest of us

Jim: Maybe you have felt that way. You are that family-

John: Mm-hmm

Jim: You’re that one in five. We need to do a better job of offering this families encouragement, and help, and hope, and that’s the core of the discussion today.

John: Yeah, I’m really glad we’re having this, uh, conversation. I’m looking forward to talking to our guest. Sandra Peoples is, uh, really a leading voice in the disability community. Uh, she serves as the special need’s ministry consultant for the Southern Baptists of Texas convention and is the inclusion coordinator for special needs families in her own church. Sandra has written a really insightful book; it’s called Unexpected Blessings: The Joys and Possibilities of Life in a Special Needs Family. And we have copies of that here at the ministry, uh, at focusonthefamily.com/broadcast.

Jim: Sandra, welcome to Focus on the Family.

Sandra Peoples: Thank you. I’m so excited to be here.

Jim: Well, it’s good to have you. You’re coming up from Houston.

Sandra: I am, yeah.

Jim: We have great friends in that area-

Sandra: Yeah.

Jim: And we love Houston.

Sandra: Oh, it’s a great place.

Jim: It is. It is. Sandra let’s paint that picture for the listener, uh, of who you are, um, give us an idea. You’re working in the church. Why is this need about special needs families so important to you?

Sandra: Well, I have been a member of a special needs family my entire life. My older sister, Sybil, she’ just 14 months older than I am, and she has Down syndrome, and so, uh, as her younger sister, I have never known life outside of a special needs family. We grew up in a small town in Oklahoma, and because she has Down syndrome and that’s one of those visible disabilities, we were pretty well known in our community. In fact, I was often referred to as Sybil’s sister (laughs)-

Jim: Right.

Sandra: Instead of as Sandra. And so, we… Because we were so close in age, we went to school together, right there, right… All my high school years were, were spent with her as well. Um, being her sister really shaped who I am, and, and who I was. I remember the first time I heard somebody make fun of somebody with a disability. I, I mean, I remember where I was standing on the playground, remember every detail about it, and in that moment, I had to decide, am I going to stand up for her, and for other people with disabilities, some of whom can’t stand up for themselves, or am I gonna try to just fade in, and look just like everybody else, and, and be just like my peers? And so, growing up as her sister shaped so much about who I am now.

Jim: Well, and it’s so important. What was your decision in that moment, and how old were you? 13?

Sandra: No, I was 7.

Jim: 7.

Sandra: I was in elementary school.

Jim: Okay, wow. Okay.

Sandra: I remember it really clearly.

Jim: So she was just the grade in front of you?

Sandra: Yeah, and she… And so I remember being on the playground, and these two friends, and they, they made fun of… They were kind of mimicking what a person with a disability would act like. And, and, uh, and they used the R… We call it the R word. We don’t normally say it, it’s retarded. It’s now-

Jim: Sure.

Sandra: Not used. It’s alw-… Usually used as an insult now, and so I’ve, I thought… Well, and even at that point, I thought… I didn’t know that was a bad word. I didn’t know that was a word that you used to be mean to somebody else-

John: Mm-hmm

Sandra: I thought it was just a label. Um, ’cause you know, this is in the ’80s, and, and so I had to say to my friends, “That’s not okay.”

Jim: As a 7-

Sandra: “You’re… This is not”-

John: Hmm.

Sandra: “How we speak kindly to each other. This is”…

Jim: (laughs) Wow.

Sandra: “My sister and her friends can’t”-

Jim: Yeah.

Sandra: “Always stand up for themselves”-

Jim: Yeah.

Sandra: “Against this kind of talk, and this kind of ac-… It’s not okay.” And, and what’s interesting (laughs), the very first adult that I heard make fun of somebody d-… With disabilities was one of these girls’ moms.

John: Ah.

Sandra: And so, you-

Jim: Oh my goodness.

Sandra: So you knew where it was coming from.

Jim: Wow.

Sandra: It was something she heard at her home. Uh, but it was-

Jim: Yeah. And-

Sandra: That is not okay.

Jim: Again, that’s such an amazing thing that you had that upbringing, you know, that it was part of who you are.

Sandra: Yeah.

Jim: Not just part of your family, but it is part of who you are.

Sandra: Right.

Jim: Your sister, who has Down syndrome, she’s part of who you are-

Sandra: Yeah.

Jim: In that way. And y- you know, what I have found so often is people that grow up in those families where there is a special needs child, um, they’re really pretty sensitive-

Sandra: Yeah.

Jim: Obviously, and you were like that. And I, I think that’s an amazing positive for people who grew up in families that, you know, have that situation.

Sandra: Yeah. I agree.

Jim: What did the doctor say about Sybil? Uh, there was some, uh, profound thing.

Sandra: Yeah.

Jim: Um, what happened, and give us the circumstances.

Sandra: Yeah, so she was born, uh, in 1977, just a couple of days after Christmas in the small town where my parents live. Now, she was their first child, and so they… There was no indication through my mom’s pregnancy that there would be anything different about her, so when she was born was the first time that they knew they would have a child with a disability. So she not only had Down syndrome, she had an intestinal blockage, and so nothing that she ate would process through her body. And so the doctors took her from the small town in Oklahoma where we lived, to Oklahoma City, where there were better hospitals, and a, a young doctor took my dad into, like, a janitor’s closet and said, “Look. Your daughter has two issues. She has this intestinal blockage that’s fixable by surgery. She also has Down syndrome, which will affect her and you every day for the rest of your life. The intestinal blockage will, will kill her. And so, if you don’t want to have a daughter with a disability for the rest of your life, we won’t perform this surgery.”

John: Hmm.

Sandra: “We will just let her die naturally from this intestinal blockage and, and you guys can have more kids, and you can go on as if this didn’t happen.” And so, you know, it’s my parent’s first child, there’s this whirlwind of going to a different hospital, and being in the janitor’s closet, and I, I just can’t imagine being faced with a decision like that, just hours after your first baby’s been born, and my dad said, “No. We believe God has a purpose for her” (laughs)-

Jim: Right.

Sandra: “And has a purpose for her being in our family, and of course we want you to perform that lifesaving surgery.” And they did, and… But it’s just… That story has stuck with me. When we’re talking about the value of somebody’s life, thinking that because of a disability their life has less value-

Jim: Right.

Sandra: Than any of the rest of us, even though they are fearfully and wonderfully made with a purpose, just like any of the rest of us are.

Jim: I mean, it, it so demonstrates, uh, a worldly view versus a spiritually directed view-

Sandra: Yeah.

Jim: You know, God’s view which is what we want to do as Christians, and so it’s awesome your mom and dad saw that. I’m kind of appalled at the number of times I hear about medical professionals, and I know they’re trying their hardest, they’re trying their best, and they’re laying out maybe the worst-case scenario, sometimes scaring-

Sandra: Yeah.

Jim: Those moms and dads into making what I would consider as a Christian, a, a poor choice.

Sandra: Yeah.

Jim: But man, it happens all the time.

Sandra: It does.

Jim: And it’s so overwhelming to hear of these doctors that pull their patients, or their… The parents of that little baby into a closet to say, “Hey, do you want us to let this baby die?”

Sandra: Yeah.

Jim: It’s, it’s not uncommon.

Sandra: It’s not. And you’d think… People with Down syndrome, if you ask them about their lives, they report a, a higher happy rate (laughs) than even the rest of us.

Jim: Right.

Sandra: I mean, they are happier with their lives than the rest of us tend to be. And so, you’re eradicating, eliminating people who are pretty happy, generally, with-

Jim: Yeah.

Sandra: Who they are, and, and-

Jim: Yeah.

Sandra: What their lives are like.

Jim: Sandra, let me… Let me move now to… I mean, again, people are gonna drop their jaw when they hear this. You’re raising this family, you have your sister who has Down syndrome, you grow up, you know, being a champion for those people who have some, you know, limiting factor in their life. And then your second son, James, uh, he’s born and what’s that situation?

Sandra: Well, he’s born, and we go a couple of years, and everything is, is pretty normal. We… Everything’s just right on. We have an older son, there’s… They’re two years apart, and so we started seeing after James’ second birthday, we started seeing some delays, uh es-… Like, in his language. And we thought, “Well, big brother talks a whole lot, and so little brother just doesn’t get the chance”- (laughs)

Jim: Right, you’re trying to figure it out.

Sandra: “To talk so much.”

Jim: Yeah.

Sandra: Yeah. And so we just kept… But we just kept noticing, and he even lost some skills. Uh, he lost some words he knew that he couldn’t say anymore, and then when my husband, Lee would get home from work, he wouldn’t go greet him, he wouldn’t-

Jim: Mm-hmm

Sandra: Make eye contact, and, and so, we… My husband was a pastor in Pennsylvania at the time, and so that’s where we lived, and we had a good friend who was an occupational therapist, and, and she was seeing these things, right?

Jim: Mm-hmm

Sandra: She’s a professional, but she was very kind and gentle with me-

Jim: Sure.

Sandra: And and didn’t bring him up until I said something to her. And so at James’ three year well visit, I was very honest with his doctor about the things that I was kind of trying to hide or excuse up to that point. And, and she said, “Well…” Like, she asked him questions. “Are you a boy or a girl?” Well, he couldn’t answer that question, and, and just the more she asked, the more I thought, “Oh, is, is this what he should be able to do?” (laughs) The gap was bigger than I realized, and so she referred us to the school system for some testing. That took some months, uh, and so it was finally November of that year, and, and we sat in this school room, in these little, tiny chairs and he met with a psychiatrist, an occupational therapist, and a speech therapist, and they did some activities with him, and then they walked out. And they walked back in, and they said, “We believe your son has autism.” And, uh, my husband and I are both there, Lee and I are both there, and, and for me, I thought, “Oh. This makes sense.” Right.

Jim: Mm-hmm

Sandra: We’re seeing these deficiencies, there’s a label for them. That means there will be help, and so some things… It’s kind of like a, a puzzle fell into place for me. Uh, but parents react differently. Lee reacted differently than I did, it was more of a shock because I had been doing this research, and so, together we had to keep going, and, and figure out what that meant for our family. I, I mean, you, you walk into this building with your son, with your family. You walk out and you have an autistic son, and you are a special needs family. That changes everything.

Jim: Right.

Sandra: It changed the way we spent our money, because now we had to pay for therapies. It changed who was in our house. We had this carousel of therapists and people coming in. It, it could have changed our… Lee’s position as a pastor if that church wasn’t willing to care for a child with a disability-

Jim: Right.

Sandra: He would have had to find another job. Uh, it changed David, our older son because he became the special needs sibling like I had been-

Jim: Right.

Sandra: My whole life.

Jim: Right.

Sandra: Um, and I knew, right? And I… Like, I knew the challenges that we would-

Jim: Yeah.

Sandra: Face because I had faced them.

Jim: One of the things that you observed, I’m sure with your sister, but also now with your son James, I mean, people can say the most crude, rude things even in the church.

Sandra: Even in the church.

Jim: Give us a couple of those examples, especially if you’re in a family that doesn’t deal with this, you think you’re being kind, and you’re really being very insulting, if I could be that blunt.

Sandra: Yeah.

Jim: But share those with us.

Sandra: Yeah. There was one time we, were still at our church in Pennsylvania and another church came to help, and we were doing a potluck together. And potlucks are really stressful (laughs) because I’m juggling these plates, and Lee, as the pastor, is trying to talk to everybody, and James, he was so… He was four or five at the time, so he’s got his hand in the desserts, you know, so I’m juggling all this. So we finally sit at the table, and James is with me, and the lady across the table, who I don’t know. She’s at a different church. She looks at him and she says, “Is he gonna grow out of that?”

Jim: Wow.

Sandra: And I, I thought… I wasn’t sure. Like, and I said, “Do you mean his autism?” And she said, “Yes. What did you do to make him like that?”

Jim: Ugh.

Sandra: Those were the words-

Jim: Yeah. Wow.

Sandra: She asked me.

Jim: There’s a guilt heap.

Sandra: It is so hard. And, and especially when you’re young, and new to the diagnosis, you’re just so tender. You’re so tender.

Jim: I’m sure you wanted to cry-

Sandra: Yeah.

Jim: Burst into tears.

Sandra: Yeah. And I, I was speechless, and I thought, “Well, there’s nothing I did.” It reminds me of John 9, when the, the disciples and Jesus are walking, and there’s the man who was born blind. And the disciples stop Jesus, and they say, “Who sinned? Was it this man or was it his parents that made him be born blind?” And Jesus said, “Neither. None of the above.” (laughs)

Jim: Right.

Sandra: This man exists to glorify God. And that… The fact that the gospel writers include that, for a parent like me, brings so much comfort, and hope-

Jim: Mm-hmm

Sandra: Because I can say, “There is no guilt. There is no shame. There’s nothing I could have done differently. There is as much of a purpose for James’ life as there is for David’s life, or my life, or Lee’s life. This, this wasn’t an accident, this wasn’t anything I caused or didn’t cause. He literally exists, like the rest of us, to bring Glory to God.”

Jim: Mm-hmm

John: This is Focus on the Family with Jim Daly, and our guest is Sandra Peoples. Uh, what an affirmation of God’s design for every life. Um, Sandra has captured a lot of this energy, and passion, and, uh, these Biblical perspectives in her book, Unexpected Blessings: The Joys and Possibilities of Life in a Special Needs Family. And, uh, contact us today, we’d be happy to send a copy to you. Uh, our website is focusonthefamily.com/broadcast. Our phone number 800, the letter A, and the word FAMILY.

Jim: Sandra, I think this is a good spot for the folks, the parents who are listening, um, to hear from you… Okay, I just had that experience yesterday. How do you counsel them not to absorb that guilt and shame?

Sandra: I think we have to, again, look to Scripture, which brings us this hope and comfort. Maybe if you’re a new special needs parent, you don’t know how much Scripture has to say about disabilities. And it, it took me awhile to consider autism a good and perfect gift. At the beginning, I felt like I was waging war against it. I have to put him in every therapy and and pay for every solution that could come our way, especially when they’re so young you don’t know what their future could look like. And then I thought, “Somehow in God’s economy, it is for His good, it is for my good, is is for big brother David’s good. It is… It’s for the good of our church”-

Jim: Yeah.

Sandra: “It’s for the good of everybody who encounters him.” And so if you’re a new parent and, and you just… You’re trying to figure out what this means for you and your family, you have to just reflect on, on God’s goodness, and how that didn’t stop when you heard a diagnosis.

Jim: Mm-hmm

Sandra: It didn’t stop in that moment. It continues. It’s new every morning, like His mercies are. We have those nights where our kids don’t sleep, they’re up until 3, or they get up at 3 and they don’t go back to sleep, and, and you think, “Where’s the goodness in this?” And it’s in God.

Jim: Oh, yeah.

Sandra: Every moment, every… As He sustains you, as He comforts you, just as He does in every situation that we read about through Scripture. There, there’s nobody in Scripture who didn’t suffer in some way.

Jim: Yeah.

Sandra: We think we’re the first.

Jim: Yeah.

Sandra: We think we’re the first to get bad news.

Jim: Yeah, and let’s zero in in these last few minutes about the church itself, and, and, you know, I have many pastors who are friends, and I would think some of the most isolated people that are, you know, in the church are the families with special needs kids because the rest of the community doesn’t know how to embrace them, or behave around them, frankly.

Sandra: Right.

Jim: You know, the-

Sandra: Yeah.

Jim: Outbursts that might occur in, in the sermon, or what… You know, and there’s just ways to work these things out. And you’ve made this your life’s pursuit now.

Sandra: I have.

Jim: So, describe for us kind of that environment. I think if you’re the four out of five, you don’t really understand what’s going on. And unfortunately, there’s a lot of impatience amongst us that may not have to deal with this every day.

Sandra: Yeah.

Jim: So, you know, inform us. Tell us the real deal.

Sandra: Yeah. It’s interesting because if you ask pastors, “Is your church accommodating? Is it-“

Jim: Of course.

Sandra: They’ll say, “Of course.” (laughter) They’ll say, “We have a ramp, or we… You know, whatever they do.” Well, well that, that does meet the needs of a certain population-

Jim: The ramps helpful.

Sandra: The ramps helpful. I’m not saying don’t have a ramp, but it doesn’t meet the needs of my family of origin, or my family now. And so… And I know it’s overwhelming when you think of every person with a disability who could possibly walk in your church, how would you meet all those needs? It’s overwhelming but, but you don’t have to make that decision. You just meet the needs of the families that do walk in the door, and you say, “There are ways that we can love this family and serve this family.” So, like, specifically with James, with autism, he’s got, uh, sensory issues, like a noise sensitivity, and so our church has noise reducing headphones, and they’re available to anybody who needs them, and, and fidgets, which is becoming popular for lots of kids now, little, like, pop things that they pop. Those help kids with disabilities, ADD, ADHD, lots of different things. They can focus better when their hands are busy, so we have what we call buddy bags, and we have noise reducing headphones in there, little fidgets, and so families can pick those up, take them into the service with them, and it helps their child be able to sit through the service longer. And really, it changes the perspectives of those around them, so there aren’t as many judgmental looks, or-

Jim: (laughs) Right.

Sandra: Insensitive comments because they see us show up, and they understand James is going to act differently, and there’s a reason for that, and then they’re able to give more grace to us, and the next family who comes in the door.

Jim: Yeah, I would imagine it also becomes a magnet for those families.

Sandra: It does.

Jim: When they find out there’s a church available that is not judgmental about their situation, that is willing to work with them-

Sandra: Yeah.

Jim: To… They want. It gives me tears thinking about this. Those parents want those kids to hear about the Lord as much as those of us that have healthy kids, right?

Sandra: Yeah. Yeah.

Jim: And if we don’t do things to help them, I mean, think of that barrier-

Sandra: I know.

Jim: For those parents-

Sandra: Yeah.

Jim: You know, they can’t come to church ’cause they’re embarrassed their kids are disrupting things, so let’s find a different way. There is a church in Florida that I heard about, and what they did was they matched an adult with the, the families-

Sandra: Mm-hmm

Jim: So when they came in the door, there was an adult volunteer from the church that would meet with the family real quick, say, “I’ll take Johnny.”

Sandra: Yeah.

Jim: And they would walk them to the, the class-

Sandra: Yeah.

Jim: And they would sit in the room. There’d be five or six adults in there with these kids-

Sandra: Yeah.

Jim: That have special needs-

Sandra: Yeah.

Jim: And sit there.

Sandra: Yeah.

Jim: And just be there for them.

Sandra: That’s great.

Jim: And the teacher would do her/his thing, and if they needed help, a distraction, this adult would engage them-

Sandra: Yeah.

Jim: And then connect the parents with them at the end. I think that’s a great example-

Sandra: Yeah.

Jim: Of what to do, but-

John: Mm-hmm

Jim: So few churches are, are able or willing, I guess, to do this.

Sandra: Yeah. And it could-

Jim: And that’s what you’re talking about.

Sandra: Yeah, it is. At our church, we have something very similar to that. We have, we call it our buddy ministry. We also have sensory rooms, so for a kid-

Jim: That’s great.

Sandra: And then we have, uh, for our teenagers and young adults, we call it reverse inclusion, and so they are… The class is designed for them, and then we invite typical teenagers to be in there. And so, we have from every level, from our little, tiny kids to our adults, opportunities for them to be fully engaged in our church life.

Jim: Well, and that is again, so good, and… For the pastors listening, I mean, maybe that’s one good reason to get the book Unexpected Blessings because, uh, you frame some of this and what can be done-

Sandra: Yeah.

Jim: So that’s wonderful. And I guess in that context, Sandra, you know, talking about, uh, the pastor, or the associate pastor, what they might be able to do. Again, you’ve given your life to this, now, and you’ve lived it your entire life. Um, what would you say to them about how they can be of greater help to that community of families with special needs?

Sandra: Yeah. A, a big part of that is just being willing to ask questions, just to have that family in your office, get them in there, say, “What would help you be more comfortable on a Sunday morning? What can we do? We’re willing to do whatever we can.” I, I feel like God builds His church in a way that there are people there, you likely have special ed teachers, therapists, and they’re members of your church, and it hasn’t even occurred to them, “Oh, I could use my skills in this church setting.” I mean, at our special need’s ministry, our volunteers, our helpers are teachers-

Jim: Right.

Sandra: They’re therapists, they’re family members, they ha-… They grew up with a cousin with a disability, and so they know what life is like.

Jim: They don’t panic.

Sandra: They don’t panic. Yeah.

Jim: (laughs) Right.

Sandra: Nothing phases them.

Jim: Yeah.

Sandra: Uh, and so just asking questions, praying that God would provide. Uh, He wants these families there. And especially, I can say this as a sibling, if our small church in Oklahoma hadn’t welcomed Sybil, they wouldn’t have welcomed me. My life would have been completely different if they hadn’t served our whole family well. And, of course, this is in the ’80s when you’re not just Google searching-

Jim: (laughs) Right.

Sandra: “How do I help this family.” They just had to do their best, and, and we had a whole group of special needs families that grew up in this church. And out of the five families, three families have people in full time ministry-

Jim: Right.

John: Mm.

Sandra: Music minister, church planner, special needs ministry consultant, and you think that’s because our church loved us so-

Jim: Right.

Sandra: Well, before it was even popular or cool to do so, (laughs) they-

Jim: Right.

Sandra: Did the hard work, and that changes a generation-

Jim: It does.

Sandra: It changes all of us.

Jim: Sandra, let, let’s end on this question. The, um… You know, we’re talking about the practical need meeting of these families to welcome them, to do what you can, to create, you know, volunteer programs, and all those kinds of things to help. And that’s all good, but understanding the unique pressure of these families, too, these tired parents that are getting up at 2:00 in the morning, and maybe not getting back to bed because their child is, isn’t capable of, of going to bed at that time.

Sandra: Yeah.

Jim: They just have to slog through it. And they’re probably now so tired that they don’t explain it anymore-

Sandra: Yeah.

Jim: They just sit there and, you know, they just look bewildered. That’s a whole ‘nother level of encouragement that we need to provide, so speak to that, the bewildered parent that is doing their best, they do have this… A child with special needs. It’s exhausting, it’s all consuming. Some days they don’t know what to do.

Sandra: Yeah.

Jim: How do we go even further to help that family?

Sandra: Yeah, I think this is what is so beautiful about being in a faith community. There’s a refrain throughout the Old Testament that I think churches would benefit from doing more of, and it is remember and tell. Remember what God has done and tell others. And so when I walk in as a special needs family, and I am honest about what my hardships are, I remember God’s faithfulness in every moment, and how He has-

Jim: Yeah.

Sandra: Met me time and time again. When I hear from another family who’s been from… Been through something, what… May- maybe it’s a mental illness and not a physical disability, or a cognitive disability, and I hear God’s faithfulness from their lips, they’re telling me how faithful God has been, then when I get up at 3 in the morning, I think, “Oh, God was so faithful to this sister at church. I know He’s gonna be faithful to me.” I can borrow (laughs) some of her faith, and it gives me encouragement. I love… I love to say we have 100% success rate over hard days. Not a one of them has taken us out yet, (laughter) no matter how early I got up, or how many phone calls I had to answer, or fights I had to have with insurance, or whatever it was, God was faithful every minute of every day. And when I tell other people that, they respond with their own stories of faithfulness, and it strengthens the whole church. That’s why I think if you’re a church that you look around and you don’t see a special needs family, or people with disabilities, you’re missing out on a lot of encouragement. We comfort others with the comfort we have received-

Jim: Yeah.

Sandra: And that’s contagious. That, that changes a whole church, and that… And how other families can walk in, and they think, “Oh, I don’t have to pretend to be perfect here.”

Jim: Right.

Sandra: “I don’t have to pretend that, that there aren’t some hard things going on in our family because I can see that there’s hard things going on for everybody.”

Jim: Well, and, you know, again, this is just my observation, some of the healthiest spiritual people that I know are the families that are, you know, dealing with a child of special needs-

Sandra: Yeah.

Jim: ‘Cause there is unconditional love-

Sandra: Yeah.

Jim: They are doing everything they can do. Um, typically my experience has been they are amazing people-

Sandra: Yeah.

Jim: That get it.

Sandra: Yeah.

Jim: And they’re nice to hang out with-

Sandra: Yes. (laughs)

Jim: ‘Cause they’re, you know, they know humanity, right?

Sandra: Yeah.

Jim: Sandra, this has been so good. Thank you for your life’s work.

Sandra: Yeah.

Jim: I really mean that. Thank you. I’m so blessed to get to know you, and to meet you, and talk with you.

Sandra: Thank you.

Jim: For your sister, Sybil, and defending her when you were seven years old. (laughter) My heart just goes out to you, that’s so terrific. And then carrying it right through. I’m not gonna tell you, I don’t know your age, but (laughter) I won’t mention that again.

Sandra: Yeah.

Sandra: Yeah.

Jim: But, I mean, just that idea, and then with your son, James. I mean, for you and Lee, and just God bless you, and, um, you know, for the folks, for the listeners, I think this is a great resource, Unexpected Blessings, uh, and what a great thing to know yourself. Get a copy for your pastor at church and start talking about it. Now here’s a little clue, my brother was a pastor. Don’t go to the pastor and say, “Hey, pastor, I think you should do something.” Do it yourself-

Sandra: Yeah.

Jim: for the church. Do what Sandra’s done, uh, just start welcoming families that have children with special needs, and then just absorb as much as you can about how to do it better and better. What a great place to start. And if you can make a gift of any amount to Focus, we’ll send you a copy of the book as our way of saying thank you for being part of the ministry.

John: Yeah, your donation, uh, enables us to reach out and encourage parents in situations like this, and equip those around special needs families. Uh, Sandra’s book does have a lot of great Scripture in it.  It includes questions at the end of each chapter, so you can kind of work through, and process, and have conversations either as a family, or maybe with your small group or your circle of friends. It’s a great book for any life struggle, really. And, uh, again, it’s called Unexpected Blessings: The Joys and Possibilities of Life in a Special Needs Family. Stop by focusonthefamily.com/broadcast or call 800, the letter A, and the word FAMILY. On behalf of Jim Daly and the entire team, thanks for joining us today for Focus on the Family. I’m John Fuller inviting you back as we once again, help you and your family thrive in Christ.

The post Experiencing God’s Grace in a Special Needs Family appeared first on Focus on the Family.

No Rule Book for Parenting Children with Special Needs

When parenting a child with special needs, you eventually learn that there is no rulebook – that being an advocate looks different for everyone. What I have learned in my own journey is that it’s easy to fix your eyes on the next surgery, therapy, diet or appointment, but it’s often difficult to simply embrace and enjoy your child in the moment.

Our daughter just turned 6. She is the most stubborn ray of sunshine you will ever meet. She loves to sing and dance, play with baby dolls and wrestle with her big brothers. We adopted her three-and-a-half years ago, and she has Down syndrome.

After we brought her home, we began doing all the things we knew would be beneficial for her. We exhausted every therapy option and we worked with her constantly. With every passing month she progressed and learned new things. She began to grow and gain weight and eventually started walking (and running shortly thereafter!).

Speech was the one area where she really seemed to struggle, but I told myself that we just needed to work harder on it. We tried every program that promised results and still made very little progress.

I blamed myself. I constantly had my eyes open for that “next” new thing to try with her, and I watched videos of other children with Down syndrome – children much younger than my daughter – singing their ABCs and reading. Sometimes, I would cry because I felt like I’d failed her.

More Articles on Acceptance and Inclusion:

• Down Syndrome: What the Doctors Didn’t Tell Us
• The Value of Every Life
• Facing Ordinary Life with Extraordinary Kids

The post Embracing Your Child With Special Needs Just The Way They Are appeared first on Focus on the Family.

The post Appearances Don’t Matter: God’s Love for the Disabled appeared first on Focus on the Family.