A Wee Ones Ambassador and her Mom Share Their Unique Back-to-School Experience with a Disability 

By Katy Fulk
@myloandmillie  

As our kids start back-to-school this fall, we have a unique opportunity to share inclusivity and disability awareness in the classroom. Schools will be full of children with unique personalities, gifts, abilities and ways of learning.

It can sometimes be tough for children to make friends and fit in at school, especially for those who have disabilities. We can support these children by educating ourselves and instructing our kids about inclusion, acceptance, sensitivity, empathy and kindness.  

We are all human beings, sharing common biology, emotions and a capacity for growth, learning and connection. We all have a need for love, belonging and purpose in our lives. Therefore, the previously mentioned skills are important because, as it has been said, “you never know what someone is going through.”

An adorable primary plaid jumper set, carefully picked out months ago. A coordinating Wee Ones bow on each pigtail. A pink pre-school banner being clutched by little 3-year-old hands with a squinty smile.

This is the picture I shared with our friends, family and even social media as I celebrated our first day of school. As parents when back-to-school rolls around, we all share the full spectrum of emotions that go along with it - excitement, anxiety and pride to name a few. But what most people do not know is that behind our carefully chosen outfit, bows and backpack are the overwhelming concerns I hide behind a nervous smile.

You see, I am the parent of a child who is neurodiverse. You may have heard that term before as there are many children and families navigating a variety of diagnosis, disabilities and medical complexities. I can only speak about my firsthand experiences and what I wish for others to know from our little family’s perspective.  I am hoping that by being open and honest - others will look at my daughter (or any person, for that matter) and see her for who she is and not a label or stigma. It is especially important to me to share our story as everyone prepares for a new school year and how to navigate social interactions with new peers. I am so grateful to Wee Ones for giving us the platform to share our hopes and I am grateful for all of you who are taking the time to read it.

To give a little backstory because people are always curious - our daughter, Amelia, was diagnosed at 8 weeks of age with a very rare seizure disorder (Infantile Spasms).  It is a cutesy name for a devastating diagnosis.   We would later learn it was caused by an equally rare brain malformation. This diagnosis has led to multiple hospitalizations, treatments, and therapies in her 3, almost 4, years of life. She must fly across the country to be treated by a team of specialists as there are not many who are specifically trained in her areas of need.

Amelia received early intervention services and now has an Individualized Education Plan (IEP) with our local school district. This means she gets support with her communication, sensory, and motor skills at school. To qualify for an IEP there is a testing process where students must meet certain criteria to qualify. Each student’s IEP then looks different as it is created to support their specific areas of need. It can include but is not limited to- speech, social work and/or counselor minutes, Occupational Therapy, Physical Therapy, Behavioral support, Deaf and Hard of hearing support, Resource, or special education minutes, Nurse assistance and more. Each district is a little different with what they offer and/or what it is called.

Part of Amelia’s communication support includes an AAC device (AAC= Augmentative and Alternative Communication) that she carries to and from school in her little backpack alongside her snack and water bottle, a chest strap helping her to navigate such a hefty task. I am always in awe watching her carry the weight of it as she struts into school, greeting every teacher and student she passes with a huge smile.

"She truly does not know a stranger."

Amelia’s disabilities and medical complexities are not obvious at first glance. In fact, most people are not aware at all until there is a sensory, communication or attention concern that arises. This is often a misconception when people hear the word disability, but they are not always an obvious outward physical or mental impairment. She spends her day split between a blended general education class and a special education class, so she is encountering a wide variety of students. You may not even know that a student in your child’s class has an IEP or requires additional support. So, with that in mind I will share a few things that might be helpful for other parents to know. Especially as my child walks into new classrooms, activities, etc. I always hold my breath and mentally wish:  

I hope others are patient when she cannot respond right away or keeps saying, “hi” when she really means, “I want to talk to you but don’t know how.”  Sometimes she may only reply with a smile or not at all, but the desire to be greeted and treated with respect is still there and she appreciates your attempt. 

I hope others give grace if she gets a little too close when she wants to socialize. It is okay to tell her, or children like her, “personal space” or “I need space please” and set a clear boundary. She does not always have body awareness, but I promise she is trying her absolute best and wants to respect your wishes.

I hope others try to talk to her or engage with her instead of being afraid that she communicates differently. She may try to verbally talk with you, and she may need to use her device as her Apraxia makes it difficult to form sentences. I know it is hard to wait patiently while she pushes the right buttons on her AAC to say, “what's your name?” and “Do you want to play?”  It means the world when you do as it shows that you value what she has to say. And if a child asks, “why does she have that device?” it is okay to say, “Sometimes she needs help with her words and that device helps her to talk with you.”  

***Related to this- we also use laminated pictures on a ring for communication at times where her device is not as feasible (the pool, for example) or even sign language. You may see other children using eye gaze, gestures, vocalizations, and communication boards to name a few. The same response will apply to your explanation if a child has questions. “That person is using ________ to talk with you.” *****

I hope others understand that she is still listening even if she is not making eye contact. She hears and understands everything even if she does not look directly at you. It is okay to ask her if she hears you if you are unsure.

I hope others accept her when she shows her excitement or happiness by holding her arms out or flapping them, or by laughing a little too loud. It may be different from how you look when you feel excited but that is okay. You will know she is happy with the big smile on her face! And Sometimes she may give that big smile but not interact much because she is overwhelmed. She will still participate in her own way; she just may need a break to regulate her body. We (her parents) or her teacher will help facilitate that. 

I hope she always gets invited to class birthdays and activities. If it is too overwhelming, we may politely pass or make other arrangements and we will communicate that to you. It goes a long way when you include us! We appreciate it SO much even if we cannot always come.

I hope others encourage their children to ask questions about “why” she may do or say certain things or needs certain support. We encourage curiosity and kids are naturally curious and, in my experience, naturally very accepting of others. If you are unsure of what to say in response, that is okay! I encourage parents or caregivers to reach out to the school social worker, counselor, or teacher with any questions you may have.  They are a great resource to help you with responses to these questions and/or ways to navigate interactions with other students. 

At the end of the day, we all hope for our children to be healthy, happy, loved and valued.  The Wee Ones community has especially made us feel loved and supported.  I appreciate all of you for taking the time to hear what Back to School looks like from our little family’s perspective. I wish you all the best school year!

Sincerely,
Katy Sanchez 

By instilling acceptance in our children, we can create an inclusive and supportive learning environment where every student feels valued. We can show our children that, like Amelia, you can try your best each day by showing others your strengths and learning from other’s differences. This not only benefits the students but also helps to build a more compassionate and inclusive society.

 

“We hear it all the time but it’s a daily reminder to me on our morning walks. She wants to inspect every bug, collect all the sticks, high five every neighbor, hug every tree, stop, and watch every airplane. Lately she loves to wait on the sidewalk by our neighborhood entrance and wave at every car and yet I was finding myself hurrying her along. And for what?

She won't always view these things with such amazement and wonder. So, I've started embracing it and seeing it through her lens. And it's just the sweetest to watch her "be little". 

And yes, those last pics are her waving at the entrance and saying hi to ants on the tree... because mommy still says we can’t give them kisses. 😆”