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Dear New Special Mom

By Chelsea Hull (mama bear)

Dear “New Special Mom,”

This is hard to talk about. I know.

Some words are really hard to hear when they are applied to your child for the first time. There is never a good time to go through the process of considering your child has a neurological condition much less having someone evaluate him for for one. It’s hard. It can suck energy out of you. However, undergoing the process can lead you toward a greater acceptance about who your child is. If he has a special need or a disability, a diagnosis can bring you peace, resources and support.

So to you “New Moms” who ask “Why should I have him tested if the professionals will recommend he be medicated and we already know we don’t want to medicate him?” Read on. If your response is “It’s a soft science. One professional might diagnosis but another would not.” Read on.

I have a couple of thoughts for you.

First, a diagnosis (if accurate) WILL validate the struggles that you’ve had with your child. Got struggles? Me too. It’s sort of like having someone (who knows their sh!t) say, “I understand exactly what you are talking about. This is hard. It’s been hard and here is the reason it’s been so hard. It is not your fault and here are resources to help YOU and help you parent your special child.” Invaluable.

To know, for sure, your child has a disability can help release a lot of anxiety you’ve faced about how to raise or discipline your child. It can be like the best therapy session of YOUR MOM LIFE. You can release a lot of….guilt, shame, and maybe just feel justified.

If you know for sure you don’t want to medicate your child, I totally respect that. Also let me say this. I never would have imagined that I would have chosen to explore medicine for my kids. And seriously, I try to dodge this conversation a lot. BUT, when I was told it could help my son and not hurt him, I mean really, it doesn’t hurt him? I realized it was no longer about my personal opinions but about his need for tools to cope with HIS disabilities. You may feel entirely different and KNOW you won’t medicate your kiddo and to that I say, okay. We can only decide for our family and you for yours. No judgement.

Let me just say one more thing.

Without a diagnosis you may not have an easy time setting up a legal binding document (Individualized Education Plan) that requires your child’s teacher to see him as a child who requires: extra response time , a safe place to calm down, or frequent reminders to stay on task. Working with three different elementary schools in the last four years (we’re military) means I’ve had to become a mama bear.

Us Mama Bears look closely after our cubs. We also reserve the right to turn Grizzly Bear without fear of judgement. Loving our special child and wanting to change the world for him is enough.

It’s not an easy journey. But it is our journey and there is only what’s right for your child and your family.

From my bear cave this time.

With respect.

Chelsea

Autism Mom, Squared

By Chelsea Hull

I find lots of things fascinating about my family’s journey, some of it IS difficult and overwhelming. However, I can laugh at the funny moments and smile during the precious times. When challenges arise that come along with raising a child who has a high IQ but limited impulse control, I love my little “race car without breaks”. I’ve learned to find the beauty in the reaction from the people around us, especially those who want to be a part of our lives.  When we meet someone who have already accepted him “as is”, it melts my heart. I’ll never forget when our new friend said “He can do no wrong, he’s great.”

I’ll never forget the day I realized my son had Autism. It wasn’t the day of his official NueroPysch evaluation and it certainly wasn’t when I read the results. It was about 6-8 months before. I’d taken the day off work to get in last-minute with a new physician in our area. After a short interview with my son, he sat me down and explained the differences and similarities of ASD and ADHD. Elijah was diagnosed with ADHD that day and given a “working diagnosis” of Autism. My world slowed down that day. My days became re-prioritized.  The lenses at which I looked through motherhood, forever changed

There was a huge rainbow that day at our favorite little famous restaurant, the one on the pier.

The most fascinating part of the unique path our family is on, has been less talked about, HIS little sister.  She is the one who flies under the radar, who has been way more challenging than “our child with Autism”. She’s my lucky charm, my Picasso, my mini CEO, and hugely misunderstood. 

Alongside this road of fidget spinners, Dog Man books, Lego builds and texture safe foods, we’ve eliminated sensory overloaded meltdowns for E1 but not E2. Learning how to keep a child’s sensory system in balance takes time and dedication. Learning what events could end in huge meltdowns requires thoughtful planning to pull off even an hour at an event others might enjoy all day. It requires flexibility from the parents. It also requires a parent understand their child’s sensory triggers and sensory needs. 

It’s a delicate dance. 

While making the necessary changes to our sensory lifestyle, one factor remained consistent. The most challenging events in our household revolved around our daughter and her needs. She’s quite the opposite of Elijah so she couldn’t possibly have Autism, right?

It’s natural when one child has Autism for the other child to act-out, right? E1 seeks deep pressure sensory input, E2 avoids it. E1 had no interest in fine motor tasks (unless it involved a 200 step Lego build) and doesn’t like to get messy in the slightest. Give E2 paints and she will create a masterpiece all over herself!  E2 isn’t attracted to spinning objects but she loves repetition in the form of play and music. She’s hyper-sensitive to sounds but can nail a pitch perfectly. Getting E2 to sleep over the years has been more than difficult, it’s been exhausting. We tried the weighted blanket, fail. The sensory vest, no way.  Until we discovered her need for “soft touches” to sooth her to sleep, it was, tough.   

Today, in my heart, I believe I HAVE accepted her Autism. It’s been a long time coming. We’ve taken her to several professionals but not one who can properly diagnose a smart, extroverted, artistic, caring, social little girl who wants to play pretend kitty cat 500 times and complete a 1000 piece puzzle all in one day (okay so she also possesses the power of hyper-fixation). Today we were given the phone number to a professional who diagnoses girls. I’ll make the call when I have the energy and I’ll schedule a time to take her in for hopefully, one last big evaluation. 

In my years working as a professional I’ve worked with so many families that remain in my heart, strong families. Families who went above and beyond to help their children succeed. Very rarely however, did I have a chance to work with a family who had more than one child with exceptional needs. One close friend however did prepare me by telling me it can be actually harder to come to accept than the first time around.  

Learning and accepting that my daughter has Autism isn’t much different for me than it was with my son. Having gone through it before though didn’t stop me from feeling like a ton of bricks landed on me. If anything, it felt heavier than the first time around and more difficult to move from my chest.  However I am more equipped to start therapies for her.  I know how difficult the road is going to be for us as a family and for her in more ways than I did with my son. I also know it will get easier as she gets more supports in place. I also know how long that could take until that happens. 

There was no rainbow today and no famous restaurant by the bay. But this time, my husband was working from home and there to give me a hug. Pretty memorable stuff. 

From a Prairie in Missouri this time, 

Chelsea

Autism on the Playground

“This will go down on your permanent record” is not only a quote from a Violet Femmes song, it’s what a noon duty told my sweet Kindergartner a few years ago. Since then, I’ve come to forgive her for saying those harsh words to my son. I know all adults are human and we all make mistakes. It’s obvious the noon duty didn’t have the skills to support my son’s social needs on a playground. Most likely, she didn’t even realize he had special needs.

I’ve come to learn, some wounds don’t fully heal. They scar. I have also learned to grow and heal from the pain I’ve experiences as a ”special mom”.

Recently I began working at my childrens’ new school as a ……. Noon Duty. As I’ve walked the playgrounds and thought more deeply about what happened, I’ve realized this topic has serious importance. That noon duty led me to my son’s actual diagnosis. The truth is, I owe her thanks.

Scars remind us of how far we’ve come and what’s hidden under the surface.

Noon duties aren’t paid or respected much. I know because I’m currently working as one. I have a whistle, a walkie talkie and the schedule of 7 different grades on my lanyard. Within two weeks I’ve also acquired several quick saying like “really guys” “come on now” and “wanna hear my favorite joke”. I’ve even had to lecture a group of boys after they got into a fight. Actually, as the days go by I’m afraid I’m going to find more conflicts, socially challenged students and discover children with Autism self soothing on the playground. It was the bravery of a School Liaison Officer (SLO) who pointed out my sons clinging on the ball was my son coping with the difficult filter autism can pose during an unstructured play time.

Social skills can be incredibly difficult for children with Autism and/or Attention Deficit Hyperactivity Disorder (ADHA) to develop. That makes what should be the simple time of recess incredibly worrisome for us Autism Moms. It’s also the time of day when our children COULD receive direct instruction because they have unstructured and spontaneous social opportunities all around them. However, I’ve yet to encounter a highly trained therapist assisting a student at lunch or recess.

If our noon duties are the lowest paid and the least respected job, then no wonder they’re also saying things like “I’ll write you up 5 referrals.” Or “I’ll send you to the principals office again and they’ll call her mother.” I think we can all agree, educators have come a long way to include children with disabilities alongside their typical peers. When it comes to children with social skill deficits, the “send them off and hope for the best” approach is very naive. It takes a kind, informed eye to keep the peace and ensure all children are treated with respect during recess.

Let’s keep working toward accepting our children HOW they are and speaking to them respectful.

These stories, these personal and poignant stories can become our strength.

More to come on this topic.

Chelsea Hull

Your new favorite Noon Duty

Before the Time of the Sign Language Interpreter

By Chelsea Hull

In a boring, white college classroom, about 15 of us sat on chairs.  Everyone looked all bright-eyed with bushy-tailed.  The emptiness of the room made our thirst for academics arousing, the anticipation of meeting the teacher, exciting. The crisp white blinds blocked the bright parking lights from glaring rudely in the room. The professor, of mediocre height and plain clothes, wrote his name on the calming, green chalkboard.  People made eye contact. 

The florescent lights in the classroom felt warm and barren as each of us listened with our eyes. All of a sudden everyone was up and moving the chairs into one large circle that created a new perimeter for learning.  The professor gave visual checks to each pair of eyes in the room.  There were adults of all ages, but I was the only child.  There were young adults, old adults, women, and men.  Some wore hearing aids, others didn’t.  Some had obvious differences, I was drawn to the variety of people in the room.   

My mother with her gentle yet scratchy voice would tell me “Look, Chelsea. They are different just like me. Now don’t stare.”  Thinking back now, I had to stare, that’s how we learn to Sign!  

The quiet room came alive with crystal clear visual communication.  When one pair of eyes met another pair, information was exchanged.  Without even a hand raised, there was meaning conveyed.  A shy smile said something.  Facial expressions carried content.   Head nods got a point across while hand movements carried breadth and depth.  People were accomplishing more, simply by looking at each other, long lingering sentences spoken.  There was a sense of keen visual comprehension.  It was beyond beautiful to me.  It was also boring and I probably tuned out about half the time. 

My mom in the 1980’s. That phone behind her had a ringer that went up to about 80 Decibels!

I watched with my five year-old eyes.  Though I didn’t know it at the time, these classes were the beginning of my journey to better understand my mother.  This experience would leave a lifelong impression on me, one that would inspire my career.  It would also shape me when I became a mother. 

Silence brought comfort. In the classroom, the void of spoken language felt like okay, like being at home. The silence comforted me. The odd noise; squeaky chair, or turning of book pages had little effect on me. There were lots of times when Mom was too loud and no one cared. So long as she never emptied the dishwasher before I woke up in the morning, it was all good. I learned the difference between noise and sound. We had a squeaky fan in our house for months, maybe a year. A phone could ring unanswered. We might dismiss a knock at the door too, unless we expected friends to come over. Our friends knew to come on in. As we grew older that would change. I would become more and more responsible for answering the phone, explaining conversations and eventually interpreting for Mom at meetings.

Mother would come home from these Sign Language classes a little different each time.  She would arrive home a bit more….communicative.  She stood a little bit taller.  She was gaining confidence. She was becoming empowered around her hearing loss.  Instead of being the outcast, she was in the in-crowd for the first time. The in-crowd was hard of hearing AND  deaf. And I was mesmerized. 

My mom always said if she could hear one sound, it’d be the sound of water.

The final exam of the semester would involve my participation.  Every night for two weeks my parents and I discussed the details of the song, Tomorrow, from my favorite movie, Annie.  During those warm summer nights, my mom and dad would stand outside under the shade of our Elm tree and practice “Bet your bottom dollar, there will be sun” with me.  We learned how to clear away the cobwebs and the sorrow until there was none.  My parents had gained my full attention and were instilling a passion in me to participate in this college level course.  They had created the most productive and effective way go teach me about my mother’s hearing loss. They snuck me in to her college level Sign Language class.       

Assessing an Autism’s Mom’s stress level: You’re cracking me up

Being Active Duty means my family has Tricare medical insurance. Tricare called the other day when I was driving. We had just had our household goods packed up and moved into our long term housing for the summer. After taking the call I agreed it was a good time to talk and engaged in the conversation. It was a call about the new requirements I’m responsible to complete so my son can get his therapy.

Let’s stop there for a second. Okay. Deep breath. Laugh out loud! Grab a drink. Wait I’m driving. I smiled and kindly paid attention.

Now, I spent so much time and energy over the course of a year just to get my son a neuropyschological evaluation. Then I waited three months for the results. Upon having those, another three months on the wait list for ABA. Then Covid happened. So I am ready to get some services for my little man. In addition to this we also registered into the Exceptional Family Member Program, the Extended Health Care Option program and attended countless appointments for OT, Speech social groups, eating therapy and even counseling to make sure we were doing okay throughout all of this. Oh and one trip to Hawaii with a few Mai Tais.

When you’re faced with sensory challenges, you learn to melt away the stress. It’s not easy. But it is worth it.

Don’t get me wrong, I got tired of all the appointments. If they were soccer appointments that’d get pretty old too I’m guessing. But he needs these therapies so we do them. No complaints! And then there is his little sister and her desire to feel special as well as her need for therapy too.

I was told I needed to FAX his diagnosis to the office. Okay-a trip to Kinko’s I can do that. Keep up with the annual assessments, sure no problem. And then the professional explains I’ll have to complete a parent stress index every 6 months! Are you kidding me? Laugh Out Loud!

I’m amazed at who this little man is becoming and grateful for the valuable services we’ve had along the way.

When you have a child with Autism, there’s a lot of pressure you feel, the whole family feels. Stress can spread like a wildfire if you’re not careful.

So when they told me there were two new requirements I completely laughed. I mean, how could you require any more from our families? I can understand how a child with hearing loss has to send proof of an audiogram. I can understand how a vision test is required before you can purchase glasses. Why with the autistic children do we as parents have to take a parent stress index every 6 months to be able to get our children behavior therapy? Are you kidding me?

I’m afraid they’re making it so difficult to get services that kids aren’t getting services, if you know what I mean. Who wants to do all this? If you want to help these families, make it easier for us to get the help our children need.

Pass me a Pina Colada and send me to the beach! Are they going to start offering free massages depending on our stress level results?

SO to my tribe of other Autism parents. What do you think? Do we answer the stress index on a really bad day or after a long day of self-care? I’d love to know your thoughts.

Don’t keep too busy,
CH

This Spouse and the Spectrum

Happy Fourth of July, 2021! This Active Duty Navy spouse and mother of two children (who require special love and attention) is proud of her Sailor.

Navigating life in the military and watching my husband climb the ranks fills me with such honor toward his service. While I’m updating my next business plan or gathering neurological psychology reports on the kids, my husband deals with important issues, missions and operations. Last night I had the opportunity to see him amongst his command. He is a leader with such integrity and precision.

When we encounter the really tough times like deployments, geographical separations and this time around, short notice relocation orders, the sacrifice the kids and I undergo is very real and raw.

I’m teaching the little E’s, during our 6-7 weeks of stays in a variety of hotels, across about 3,000miles, there is honor in all of this transitioning. I feel everyday how disruptive our lives truly are, to pick up and move in two months instead of ten. It is not easy. It’s hard. Yet, through all of the madness between movers and suitcases, autistic meltdowns and sensory overloads, serving this country, I’m so humbled.

We who don’t put on the uniform everyday see the character in our men who have taken the oath. Therein lies the honor for me.

We spouses may be the backbone, the rock, his pillars, the best fort keepers, primary caregivers, and wrestle with being a mother and father to our children during times of separations. We may look glamorous in ballgowns and impress you with our resilience to get up and go. But we are also often so tired, grieving the loss of our friendships and colleagues. We fumble through a suitcase to find a pair of reading glasses, happy to have found a descent shirt for the event. We cope with this lifestyle because we love our men and we love this great, grand country. We love and respect of all our men and women at all ranks, from all over the world.

Someone thanked me for my service the other day, as I was, finally, renting a car. It touched me so much in that moment because I could just tell, she really meant it. That was the highlight of my entire week.

So this Fourth of July, do me a favor, thank a spouse for her service and mean it.

From the road this time,

CH

Rocking a pair of readers from my stepmom and feeling pretty in that pink shirt.

This Follow Through Mom

When my son was first diagnosed with Autism, my top concern became getting him the services he needed. I had a lot of guilt for not knowing about his Autism sooner and not getting him enrolled into special services sooner. Although it’s typical for boys with Aspergers to be diagnosed a little later than other children on the spectrum, that didn’t help my sense of urgency. It’s not unheard of for parents of children with high functioning autism to find it very difficult to get the school system to provide any services. This leaves us parents fishing around for services in the community for a social group, a qualified OT or ABA services. Instead of “fighting or educating” the school district to understand his unique needs, I looked to private clinics, which my insurance would cover.

It took us almost a year to start ABA services. Can you imagine a child who needed glasses waiting a year to see? How about a child who needed a wheelchair? Although we were willing to pay privately, service centers refused to work with us, telling us they only accepted payment from insurance companies after a firm diagnoses was made. We were anxiously awaiting the support from the evidence-based services we’d been waiting for.

Elijah celebrating
Autism Awareness Day 2021

Throughout this process of accepting my son’s special needs and navigating my way through the various medical and therapy appointments I’ve always considered myself a “follow through mom”. I make every appointment. I prioritize his appointments over running my own business or my own need for a little self-care. I followed through on every recommendation made. After doing this for two years now, I’m starting to wonder if any therapists are going to work around our families schedule. I also wonder if the next school will want to provide my son with the accommodations he truly needs to be on a level playing field with his peers in the general education classroom.

If you’re the parent of a child with special needs I’m guessing you know exactly what I’m talking about. Hey-I get commitment. When you sign your child up for soccer, you commit to those days and times. I can commit to a day and time. However, our son becomes overstimulated, anxious and exhausted from overstimulation. That makes scheduling our days and weeks way more difficult. Two events a day is plenty and many of us also have to navigate around medication times. Have you ever had a therapist ask why your child wasn’t medicated for their session? When private clinics or therapists put any pressure on a special needs parents, it only adds difficulty to our already complicated lives. We need support, that’s why it’s called therapy. We need these offices and service providers to make it as easy on us as possible to commit to a good day/time for everyone, not just the staff members.

The year I knew he was going to need support and therapy. Easter 2019

You know, sometimes I think I am a really sensitive person, particularly when it comes to the best interest of my children. But after working as a special education provider and a home services provider first and becoming a “special mom” second, service providers have got to start doing better. They’ve got to listen to parents when we talk about our families schedule and preferences for therapy times/days. With zoom becoming a real option and parents becoming more savvy on learning how to help their child without having to meet the demands of a busy clinic’s schedules, maybe clinics will.

Attending IEP meetings on zoom isn’t going to change, thank you Covid for that. This is a great time for us as a united group of sensitive, caring and loving parents of children with special needs or “follow through moms” to let our community know we need flexibility and compassion from our providers.

Caring about a Diagnosis

I was born into an exceptional family, raised by my mother who was deaf, a rubella baby, with a heart condition.  I have been a teacher of the Deaf and Hard of Hearing for 20 years in four different states. I am also the co-founder of the Hands & Voices Military Project, we are part of a parent-driven, non-profit organization which provides un-biased support to families of children with hearing loss with about 42 chapters across the country, and we act liaisons, connecting Military families to local H&V chapters. We have over 200 families on our facebook page, answering questions about Tricare and service providers across the country.

The Hands & Voices Military Project is partners with the Hands & Voices Advocacy, Training and Support Program  (ASTra).  ASTra is ready to support our military families in need of advocacy.  Jessica Strong, research analyst with Blue Star families, found research suggests EFMP families experience dissatisfaction with 40% of their child’s service providers. We deserve better.  

Elijah’s first reunion post deployment

Here is my family’s EFMP story. 

It is a story about how a school district denied my son his rights to a Free and Appropriate Public Education (FAPE).

Together my husband and I have two children. Our son Elijah is 7. Our daughter Emily is 5.  Elijah is known to be gifted with a high IQ and is diagnosed with Autism Level 1 and Attention Deficit Hyperactivity Disorder (ADHD).

The impact of COVID-19 is felt everyday in our home as a lack of structure is difficult for our son. 

Like most parents, my husband and I assumed our son would be, well, you know, a “genius”. We doted over his first words, taught him Sign Language and encouraged all of his interests. As Elijah grew, he showed NO regression in language (instead he was precocious). All of his medical check-ups were normal. We got stationed at the Naval Postgraduate School in Central California. Life was grand! 

During the summer of 2018 my husband left California to attend Service School on the East Coast before reporting for duty at our new station in Alaska. We were having some difficulty in our marriage, separations aren’t easy. I stayed behind with the children to offer them a consistent education for the 2018-2019 school year. This would be a challenging effort, but as we teach our children, “ We are Navy Strong. There is nothing we can’t handle!” We rented a small cottage in one of “the best” school districts. 

Shortly after Kindergarten began Elijah came home with “write ups”. I asked to come observe him and was denied.  The school staff insisted Elijah was angry because his father was deployed. When “write-ups” progressed to “referrals”, I requested a formal meeting, where I was told again my son was just “acting out”. My concerns, which I shared verbally and in writing included many of the signs and symptoms of Autism; lack of eye contact, hyperlexia, toe walking, and preference for solitude.  Do these concerns demonstrate a reasonable suspicion of a disability to you? I disagreed with the school staff, requested that my disagreeing be documented and requested an Initial Assessment for Special Education, under California Child Find, Law. 

My sweet Kindergardner

After my request, I received silence.  Having just become certified in the H&V ASTra program, I was aware of the school districts responsibilities to respond to my requests within a reasonable amount of time.  No prior written notice. No formal evaluation. 

No compliance with Special Ed law to offer my son an assessment. 

The referrals kept coming, and I’d discovered the yard duty told my son “this is stay on your permanent record”  I insisted on another meeting. Again, I was told my son was acting out due to our transient lifestyle in the military. Finally, I turned to ours bases’s School Liaison Officer who suggested I seek referrals from our pediatrician for Autism.  This was the first time anyone seemed to CARE that my son might have a disability.  My world stopped, but I didn’t. I followed through on every recommendation to get my son the help our doctors suggested. 

The Day of the Diagnosis

Immediately, there became a clear dichotomy between what the medical community was telling me and how the school district responded. When I presented the school with Elijah’s ADHD and working Autism diagnosis, I was asked “when are you moving to Texas again”. They ignored requests from our NueroPyschologist to start the IEP process BUT agreed to an OT evaluation. 

So I waited. 

After waiting 60 days, for OT evaluation which I hoped would qualify him and start the IEP process.  They informed me they only observed him, during snack time and he did not qualified.

Time was up.

As I left town, I filed three state complaints. Knowing the laws allowed me a leg up in being able to at least make a difference for families of the future in that district. The California State Department of Education found the school district, out of compliance on three complaints. 

At one point I was told “you are just sensitive because you are a special education teacher of the Deaf”. Despite all my knowledge and efforts, this district refused to comply within the law in a timely manner.  I needed more support, readily available. So do many other families.

-This was written for a speech delivered at the Congressional Military Family Caucus Summit in 2020.

Autism is Not a Label

Since my son was diagnosed with Autism I’ve had some pretty intense conversations about the word. I’ve read lots of blogs, become a fan of several Autistic YouTubers and listened to all of Temple Gradin’s Audible books.

Here is something I’ve been wanting to say: Stop calling Autism a label.

A label is something you wear on your jeans or try to fit into in high school.

Autism is not a label, it’s a diagnosis given by a NeuroPsychologist after months of waiting for the appointment. As a parent, I sought a diagnosis after years of restless concern over my son’s fascination with running water and garage door openers. I’ve spent years trying to understand why he didn’t engage with other children, and why no one seemed to help me understand why.

You have no right to assume I WANT to label my child. Just because he doesn’t “look Autistic” or is “getting good grades” are your labels. Another one I love was given to me after months of waiting to start occupational therapy (OT) at our new location in Alaska. When I mentioned our desire to finally start ABA services (imagine waiting for a year to get the one service they say will make a difference in your child’s life), she said “Isn’t that service for the “more Autistic children”.

Seriously great eye contract

Seriously. Professionals. Now my child isn’t Autistic enough?

If you’re still reading this, then you’re open to understanding the crucial point in all of this. Autistic children “mask” their behaviors constantly to ft in with others. They work incredibly hard to follow the social norms we parents, work incredibly hard to teach them explicitly because they struggle to learn them independently or incidentally. You’re not going to see what we see at home. That’s just how it works.

Understand that it’s okay to call my son, Autistic. He is. Have you ever put a negative word in front of yourself? Well I’m a surfer girl at heart. I’m not a girl who surfs, because that would make it awkward. I’m proud of who I am and I want my son to be as well. We thank you for the idea of child first language, however we want to reclaim that word and define it for us, with love and acceptance.

Dabbing, possibly the coolest stim

Autism is not a bad word, unless you whisper it. And it’s okay if you feel uncomfortable saying it. Imagine how Autistics feel all day, everyday as they navigate social situations.

Thank you for reading. Stay just busy enough.

Chelsea

Where Two Roads Meet

Where Two Roads Meet: A High Functioning Boy and his Godmother Relate 

By Chelsea R. Hull and Taletha Derrington 

Very recently my six year-old son was diagnosed with Autism Level 1 plus ADHD.  The diagnosis is where I began my journey into the grieving process. I started reaching out to people who truly understand Autism and the condition.

Though my beautiful boy doesn’t look any different from anyone else, his high IQ and social struggles make some days very difficult. With the right teacher, he is able to succeed in a mainstream classroom. With the right supports and coaching, he can play soccer with neurotypical peers. However, this is no easy road for him, me, my husband, his sister, and for us collectively.  Autism and his high IQ make life challenging, a lot.  

Having had a career in special education, helped in some ways, to prepare me for this journey.  That said, nothing could have helped me through a process of accepting a diagnosis of Autism Spectrum Disorder Level 1 plus ADHD. I know a lot about behavior modification and language development. I also know a lot about the field of Special Education. I however, know nothing, about accepting the struggles we face as a family, everyday.

One of my longest and dearest friends is Taletha Derrington, Ph.D, a Senior Researcher in early childhood policy, systems, and programs. And she is my son’s Godmother. Turning to Taletha was enlightening. Taletha’s years of experience in the field of early childhood combined with her love for my family made for long thoughtful insights into the topic of High Functioning Autism or what was known as Asperger’s. She offered support as we traveled through a world of evaluations, therapies, and a flawed school system. She also shared understanding and empathy about how my son might be experiencing the world of people, as she can relate.

If you saw my son at the park you might not think or care to know if he has a neurological difference. You might however notice he’s not playing like the other children. You might, however, stop and consider him rude because he may not respond to your child; he might cut in line for the slide, howl with excitement, or even knock over your two year-old because he didn’t notice she was there. All of these subtle nuances may not seem like a big deal. But if you lived with these nuances everyday, and you are neurotypical, you might be struggling. You might want someone to understand and provide services that address all of the social cues your child misses. You might really want your child to be accepted, not just tolerated on a playground, in a classroom or in your neighborhood. 

Here, Taletha opens up in a poem about a recent experience that prompted intense reflection on her own lifelong interpersonal transactions and what it feels like to be her. Perhaps if we can all cared and listened to the social struggles of our High Functioning community, we all might be a little more inclusive. Wouldn’t that be enlightening?  Perhaps, given their high IQ’s we might also learn a lot from them while they learn from us. 

Outcast. For Being Me: 20 questions and a statement

1. Have you ever felt like an outcast?

2. Have you ever been outcasted?

3. On a subtle scale?

4. On a social scale? 

5. On an inner scale?

6. On an outer scale?

7. On what scale?

8. Have you ever outcasted someone?

9. Have you ever comforted an outcast?

10. Have you ever resonated with an outcast?

11. How do these questions make you feel? 

12. How do you think these questions make others feel?

13. How do you feel about outcasts?

14. How do you think about outcasts?

15. How do you deal with being your authentic self?

16. How do you deal with others being their authentic selves? 

17. Who are you?

18. Who else can be a better you?

19. Why does inclusion matter?

20. How can you believe that you are already the best you?

You are the only you. 

The best and only you. 

Regardless. 

Accept.

Breathe.