by: Annie Crane

6:30am – Beep. Beep. Beep. I roll over in bed and try to focus on hitting the stop button on my phone. I lay on my back and struggle to keep my eyes open. Immediately, I run through a mental checklist of all the therapy appointments and items on my to-do list for today. I pick up my phone to scroll through Facebook. Mindless scrolling. My mind drifts between some of the good days and hard days of motherhood.

Meet Annie, Matthew, & Nora

My name is Annie and I’m the mother of two amazing children with disabilities. My days as a mom are spent watching therapies, going to doctor appointments, researching, scheduling medical appointments, and looking up other therapies, medications, or new interventions for my kids. Oh, and I provide daily care for my daughter.

Both of my kids have Autism. My son, Matthew, is seven years old and is in 1st grade. He LOVES Hot Wheels and basically anything that has to do with cars and transportation. He has been able to identify every car in a parking lot (Honda, Toyota, etc) since he was two and half years old. He is incredibly smart and hilarious. Most would consider him high functioning or in the old terminology, Asperger’s. He struggles with changes in his routine, processing his emotions, and recognizing and implementing social cues/skills. He was diagnosed when he was 4 years old, long after our daughter, Nora, received her initial diagnosis.

My daughter, Nora, is four and a half years old. She loves Minnie Mouse, her brother, giggling when someone sneezes or trips, and swinging in her swing. Her smile will brighten anyone’s day and her laugh is infectious. In addition to Autism, Nora has Agenesis of the Corpus Collosum (ACC), which means that she is missing the part of the brain that sends information between the right and left hemispheres.

To understand ACC, think of a circle. Imagine that you want to get to the top of the circle the fastest way possible from the bottom. Your first thought would be to go straight up the middle. For Nora, she would have to go all the way around the outside of the circle to get to the top. This is how Nora’s brain works. Information takes longer for Nora to process because the connection between her brain’s halves, her direct route is missing. She was born without it, though we didn’t find out until she was 10 months old.

Nora has a longer list of other diagnoses, including global developmental delay and microcephaly. Nora cannot walk independently yet and is nonverbal.

The moment I became a mother of a child with disabilities

I remember the moment I got the call about Nora’s diagnosis very clearly. Looking back now, it was a moment that changed my life and ultimately how I was going to parent in the future. In the moment, I was full of confusion, high emotion, and guilt. I don’t think I registered how much I would change and our lives would change after this phone call.

Nora had just had an MRI. The neurologist said he was checking for something called microcephaly.  At the time, I remember googling it and seeing phrases like “small head” and “developmental delay.” At the time, I remember not being very concerned and believing that her physical therapy would resolve it. I can confidently say, I was very naive about the situation, but most importantly, I was in denial that something serious was happening.

When the tech called with the results, he began saying all of these large medical terms that I did not understand. “enlarged ventricles.” “Agenesis of the Corpus Callosum.” “copolcephaly.” I asked if they could spell all of these words for me. I pride myself on earning a master’s degree, but these words were foreign to me. I wrote each word on a scrap piece of paper. I asked what some of these words meant. I remember getting answers like “missing part of the brain, extra space in the back of the head.” He said the doctor also confirmed microcephaly. He told me the neurologist would follow up with us at our next appointment, almost 2 months later. Never did I expect to hear that my child was missing a piece of her brain.

Immediately, I started googling some of these words in hopes of a better idea of what the MRI results indicated. We all know Dr. Google is the best way to get medical information. (Insert sarcasm.) But, in this case, I did learn what these words meant, but not the ramifications of how that would affect our lives moving forward. I collapsed to the floor, allowing the tears to fall.

The Hard Days

Nothing really prepares you for motherhood, but everyone has some idea of the basics. I spent the first two and half years of motherhood, thinking my life was going one way. I had it all planned out. My husband and I had all these goals and dreams.

After that phone call and in the months that followed, my role as a mother became a lot more complicated. My emotions went through all stages of grief. I learned how to be a therapist, scheduler, researcher, medical expert on Nora’s diagnosis, observer, and most importantly, an advocate.

My husband and I grieved the life we thought we were going to have with our children. Honestly, we still have days where we still have moments of sadness. Those are usually on the hard days when one or both kids have had multiple meltdowns and everyone ends up crying.

When I think of hard days in our house, I think about when Matthew has several meltdowns in one day. A meltdown may begin over a waffle, but really is about a change in his schedule. A meltdown can start with harsh words and can escalate quickly to throwing a plate across the room. My goal is to remain calm and get Matthew to “take a break” to calm down. While this is happening, Nora usually begins to cry or head banging because there is yelling or crying. In these moments, I struggle to keep everyone safe and make the right choices. There are days when this situation is on repeat and I feel resentment. These are the low moments of special needs parenting.

The Good Days

Since learning my children have disabilities, there are so many things about my life that have changed for the positive. I’ve become a better advocate for myself and for my children. I’ve learned I have to be bold, ask questions, and most importantly, ask for help. I’ve met so many amazing, strong parents, therapists, teachers, and administrators who really care about Matthew and Nora. The amount of gratitude I have for these people is unmeasured. I could not be the mother I am without their support.

Nora and Matthew bring so much joy to our lives. Every small milestone is big in our house. There were big cheers and tears when Nora brought scissors to the paper during occupational therapy. It took a year of hard work for her to do it on her own. We also celebrated when Matthew started using his scissors correctly to cut simple shapes.

When there is a really big milestone, it makes all the hard days worth it. A month ago, Nora and I were at Nationwide Children’s Hospital for her bi-weekly physical therapy appointment. Nora’s been working on taking independent steps between small distances like the couch to a chair. Up until this day, Nora was consistently doing 4-5 steps independently between people. Her steps had started to look more sturdy and she looked more confident.

We had moved to the large gym area.  Her therapist had Nora in an independent stand position. She saw another child across the room. She must have got excited because she started to take steps independently across the room. She would pause, gain her balance, then continue again. I watched my child confidently take 20 independent steps across the room in that moment.

When she plopped to the ground, I had tears in my eyes while her therapist and I cheered. Nora looked pretty proud of herself too.

I smile when I remember this particular day. It felt like one of the biggest dreams I’ve had since Nora’s diagnosis, that she would walk, seemed inevitable. I know she will get there. As I say, she does things in Nora time, when she wants to.

People have told me over the years that I’m super mom and they don’t see how I do all that I’m doing. I am just surviving day-by-day and doing what any mother would do, regardless of ability. I’m just trying to set my children up for the best possible future. It just looks a little different for us. It isn’t your normal, but it is our normal.

6:50am: Twenty minutes have passed. I hear Matthew get up, go to the bathroom, and head to the basement to play Hot Wheels before school. I guess it is time to get up and get into the shower before Nora wakes up. It is the only time to myself before the craziness of the day begins.

My Story.

I’ve been an autism parent for about half of my life now. My oldest was diagnosed in 2005 and my two youngest followed about six years later. I remember very vividly what it was like to hear each of my kids receive their diagnosis.

I cried at each of the appointments because I was scared for kids and honestly, a bit ignorant as to what it meant to be diagnosed as being autistic.

When my oldest was diagnosed, it was pretty obvious that we were dealing with something but we just didn’t know what. My oldest was suffering from a very rare, regressive form of autism called Childhood Disintegrative Disorder. He developed typically, hitting all his milestones and then it feels as if around his 4^th birthday, he was put to bed one person and woke up another. The regression was significant enough that it completely changed his personality and I ultimately had to grieve the loss of the child I knew and get to know that child that was.

When my two youngest were diagnosed, I was totally caught off guard because I didn’t see it. I was so used to what autism was for my oldest, and they didn’t present the same way.

I cried upon hearing their diagnosis because I didn’t understand that every child on the autism spectrum is unique. I had mistakenly assumed that receiving a diagnosis of autism, meant that my two youngest would end up going through what their big brother went through and I couldn’t bare the thought of going through that again.

I would soon learn that if you meet one kid with autism, you’ve met one kid with autism. That basically means that every child on the autism spectrum is just as unique as every child who isn’t. 

Each of my kids are amazing in their own right. They each have their own set of strengths, weaknesses, likes, dislikes, things that make them happy and things that make them sad.

Fast forward to 2021. My oldest is now 21 years old and my two youngest are 12 and 15. Each of my kids are brilliant and beautiful in their own way. They each bring a different kind of light to the table and make the world a better place.

The reason I share this brief story is because I know what it feels like when you first hear your child is on the autism spectrum. I know how scary that can be, especially if you’re not familiar with what autism really is.

I want you all to know that while autism can, and often does present many challenges, it’s also been the single most rewarding experience of my life.

Over the years, my kids have taught me more than I could ever teach them. I’ve learned about patience, and slowing life down so I don’t lose sight of the little things. I’ve adjusted my expectations and I wouldn’t change my kids for anything in the world.

You can read our journey from start to present by visiting theautismdad.com. I’m always happy to help in any way I can.

#Autism #AutismParent #AutismAwarenessMonth #Advocacy

Do you foster #inclusivity and #acceptance to the family members, friends, neighbors, co-workers and colleagues in your life who have a disability?  Do you see the person, not the label?

Do you know the distinction between a disability and a handicap?

PEOPLE FIRST language is the appropriate way of addressing or referencing a person with a disability that quite simply, recognizes the PERSON FIRST, not the disability.  Even the most conscientious caretakers can unknowingly use language that could be hurtful and disrespectful to people with disabilities. 

A disability is a condition caused by an accident, trauma, genetics or disease which may limit a person’s mobility, hearing, vision, speech or mental function. 

A handicap is a barrier or circumstance that makes progress or success difficult, regardless of whether the person has a disability.

When writing or speaking about people with disabilities it is important to put the person first. Catch-all phrases such as, the blind, the deaf or the disabled, do not reflect the individuality, equality or dignity of people with disabilities.  In short, the disability never becomes a noun.

Below are some examples of PEOPLE FIRST language to use when describing, speaking or writing about people with disabilities.  You don’t need to worry about saying something incorrectly when you just remember to put PEOPLE OR PERSON FIRST.

• Person with a disability or persons with disabilities NOT disabled
• Person who uses a wheelchair NOT wheelchair-bound or confined to a wheelchair
• Person who has Down Syndrome NOT Down’s person
• Person with a physical disability NOT a cripple
• Person who uses a communication device NOT a mute

A person or group of people with a disability should never be referred to as “disabled” but instead “a person with disabilities.”  Similarly, a person or group without a disability should be defined simply as, “person without a disability” — not as “normal”, “healthy” or “typical”. 

Watch this short piece provided by WBNS 10tv to learn more: https://bit.ly/3sFLb83

Share this information with people you know —we all know someone with a disability.

It matters to us.

Written by Sarah Bloom-Anderson

Meet Audrey…

Audrey has PURA syndrome, an extremely rare genetic condition that can cause learning disabilities, delays in development and often causes problems with sitting, walking, movement and speech.

Easterseals became part of Audrey’s life when was she was 14 months old.  Easterseals’ Early Intervention program provided her with the therapeutic and educational support she needed to successfully transfer to a traditional preschool in her school district.  At 9 years old, Audrey loves school and is thriving and her mom, Sarah, attributes this to Easterseals.

“Audrey loves, loves, loves school,” said Sarah.  “Easterseals provided my daughter with the start she needed to succeed in school. Her teachers and therapists always comment on how working with Audrey is a joy because she is cooperative and excited to try new things even when they are hard which again, I credit Easterseals for helping her learn the value of always putting forth a positive effort.”  

Following her experience with the Early Intervention program, Audrey continued working with Easterseals through the Chance to Dance program.  Chance to Dance teaches students how to appreciate the art of movement through rhythmic ability and to use various music as well as imaginative play. Just like the name says, these dance classes provide the opportunity for kids with special needs a CHANCE to DANCE.

“Audrey loves listening to music and dancing, so I was thrilled to learn about Easterseals’ Chance to Dance program,” said Sarah. “She has participated for several years and always looks forward to her classes where she can meet new friends who like her, love this opportunity to move, dance and laugh.”

As March is Disabilities Awareness month, we asked Sarah what her thoughts are on the topic of acceptance and inclusion and what she hopes for her daughter and others with disabilities.

People with disabilities have intrinsic value. Just for being themselves. There has been remarkable change, of which Easterseals has definitely been a leader, in the past several decades. But there is still a long way to go.

I see great potential and hope when children and adults with disabilities participate in daily activities with people without disabilities. That is inclusion! My daughter is young still so where we have actually experienced this, other than school, is in her Chance to Dance program that invites children with special needs and with their friends and siblings without disabilities to dance together. They get to all dress up and be nervous together, seek the spotlight and encourage each other, and mostly, just have fun together. Kids without disabilities learn how that even nonverbal kids are funny, have things that they like and dislike, and have things that are hard and things that are easy. When it really comes into focus is when children without a disability begin advocating and talking for their nonverbal friend. That magic literally translates into creating a better world for the child with disabilities. In exchange, by just being themselves, the disabled child is making a kinder, more loving world for us all.