This is us

I was never a morning person. Never a solid routines person either.

I was never on time or organized. I had piles of chaos but could tell you exactly where everything was.

And I remembered everything without ever taking notes. 

I stayed up late and didn’t worry about the next day. Or the future. 

I never worried about money or saving all of my sick time to use for someone other than myself. 

I took vacations. 

And then I had a kid. A kid with autism. 

I learned that it doesn’t matter whether or not I am a morning person because she is a morning person. 

And routines are life. 

Schedules equal sanity. 

And if I don’t know where her doll’s purple shoes are with the yellow flower at all times, there is going to be a tantrum.

And if I don’t keep up with her therapy, care, and education plans—She suffers. 

Being a mom changed me. It made me worry about tomorrow, and about myself, and what if I am not here.

Some would say I am not fun anymore because the kids go to bed early and we spend our time with them instead of partying like it is 2004. 

And I don’t recover the way I did in my twenties. 

While I used to remember everything I needed and everywhere we had to go, now I feel like I am always forgetting something.

Like why I walked into a room.

Milk.

Putting gas in my car. 

And I go to bed early because she is going to be up at 7 am, even if I keep her up until midnight. 

And as much as I need a vacation, we never have enough PTO left to take one as a family. 

Because this is our life now as morning people who are organized, who follow routines, worry, and spend all of our money and PTO on taking care of children. 

This is us. Not just me.

Stop Commenting on your Student’s Negative Behavior

As a parent, especially a tired one, the first reaction I had to my child’s behaviors were to comment on them.

“Stop screaming.”

“Get off of the kitchen table!”

“No spitting.”

“Don’t slam the door.”

“You need to apologize!” I was especially hyper-focused on this one. Forcing my kid to apologize when she did or said something wrong was like an instinct. It was something I felt like I had to reinforce.

But you know what directly commenting on negative behavior actually does for many kids? It breeds more negative behavior as their emotions escalate and children become reactive.

I first stopped commenting on my daughter’s behavior when our BCBA (Board Certified Behavior Analyst) wrote it into her behavior plan for ABA Therapy (Applied Behavior Analysis). 

A problem behavior at the time was spitting. The plan for changing the behavior was never to comment on it.

picture of a girl swinging

Never. Ever. Comment on it.

That sounds insane, right? How could she learn not to spit unless I reprimanded her for spitting?

The solution was to wipe her mouth with a napkin whenever she did it and to redirect her with prompting that specify the desired behavior.

So basically, Ally, 5, would spit and I would wipe her mouth and give a prompt like, “We are coloring this picture with our hands. Show me the right way to color the picture.”

If Ally would continue to spit or non-comply, I repeated the act and prompted her to do it the right way. Sometimes I would even tell her, “let me know when you are ready to do it the right way,” and I would wait. Again, still not commenting on the behavior. Not demanding an apology either. I was firm and consistent. 

Then I praised her for doing the right thing.

Over time and with consistency in responding to the behavior, her spitting decreased drastically from often to almost never. A big part of changing this behavior was in part to ignore it but to also model the desired behavior. And I had to ask myself whenever I felt doubt — was it more important to change the behavior or to receive an empty apology?

Similar practices were applied to and worked with other behaviors like saying bad words and slamming her toys.

It all worked and we have had great success. Kids don’t need to have autism for this method to work either. You just need to ask yourself — how do I get the child to engage in the desired behavior? 

I thought a lot about this method recently after my stepson showed me a video of an incident on his school bus. First, we had a conversation about not recording people without their permission. But I watched the video (before he deleted it) and it made me wonder if this situation was unnecessarily escalated.

What I saw in the video was that the student (who was also a student of color) was upset when he entered the Special Services Transportation Bus. He slammed his backpack onto the chair and sat down. It was clear that he was in a bad mood.

After the bus pulled away from his home, the bus aide asked him not to bring his attitude onto her bus and he responded, “Leave me the F^*# alone.”

The aide said, “How dare you speak to me that way. You better apologize right now!”

Then the student responded with another, “F^*# you” as he slammed his backpack around the bus aisle.

She threatened the student with disciplinary action… being written up, calling the principal, etc.

Then, it looked like he was sitting alone towards the front of the bus not saying anything.

But the aide continued pushing for an apology.

“You better apologize, how dare you speak to me this way.”

In turn, the boy lost his temper, he threw things, cursed, screamed and entered a full-blown meltdown. We all know what a meltdown looks like. But I will make it known that the boy did not put his hands on anyone or threaten to. Not that I heard anyway.

The police arrived at school and took the student once the bus stopped. Our son stopped recording just before that happened.

What I saw was the staff escalating this situation to the point where this student needed restraint rather than appropriately de-escalate the situation. It bothered me for days. 

I wondered in the back of my mind — would the child have escalated if they ignored the behavior?

What if the aide simply asked the boy, “What’s wrong?”

What if they just ignored him altogether and said nothing. Why did they feel to engage him? 

I don’t know much else about the situation because it wasn’t my place to pry. I don’t even know the student from the video or his family, but I felt a great sadness for him because clearly something bothered him. 

Dealing with undesired behaviors is everywhere these days. I’ve had my share of misbehaved students in my college classrooms, and I have dealt with more than my share of customers in the business world who have yelled at me, cursed at me, and carried on.

Demanding an apology is most likely never going to solve a problem. It rather escalates a situation. In a customer-facing role, it may have even caused a bigger problem. I wasn’t allowed to demand apologies from customers who disrespected me and there is traction to that approach. 

Almost every time that I have ignored a negative behavior and prompted a student or a customer to the desired outcome — I have received an apology without ever asking for one.

I’m not saying I let people walk all over me because I don’t. But we live in a society that lacks soft skills and communication. A society that can’t handle failure and is sensitive to negativity. A society with short fuses and poor self-regulation. Sometimes, in order to interact, you need to think about how you respond to the people around you and consider if that response will drive the right or wrong results.

I’m not a bus driver. Or a bus aide.

I’m not a special education teacher.

I’m not a behavior therapist.

And I’m not saying this approach will work for all kids. 

I’m a parent who followed directions and changed my approach.

And I change my approach wherever else I need to, even in my own classroom of adult learners. Having my own child with autism has taught me a lot about the rest of the world — that making an impact isn’t always achieved the way we thought it was. 

That no one is perfect. 

That we don’t know what baggage people are carrying around with them every day. 

Sometimes the hardest response is the one that someone needs. Learning to ignore negative behavior in order to teach someone took a lot of patience and practice but the results of achievement outweigh the need to control. 

*Please note: It is never recommended to ignore behaviors of any persons that pose a direct threat to themselves or others. 

Thankful for hitting rock bottom

When Ally was young, I made mom-friends and had her involved with other kids. They played and went to the park. Everyone always complimented Ally’s imagination and how engaged she was.

Her vocabulary.

Her perfect curls and piercing blue eyes.  

The first two years of parenting seemed normal.

We hosted an annual “noon year’s eve” party at our house for the kids and Ally had lots of “friends” to go trick or treating with.

Being a mom seemed so social and I never worried about being isolated.

I had a kid that slept.

Sure, she was fussy and got into her moods but not much felt out of the ordinary realm of her being a strong-willed child.

 I had a kid that did not rip through my cabinets or get into the chemicals under the sink.

I thought that made her a good kid, not a delayed kid.

But things became clearer as the other kids excelled and Ally fell behind.

I remember when a bunch of the neighborhood kids rode bikes together for the first time. They all had tricycles or toddler bikes with training wheels. Their first bike rides were identical. None of them could pedal and steer at the same time.

But as the weeks went by, the other kids got the hang of it and were able to pedal and steer at the same time but Ally rode her bike like it was the first time, every time.

She got frustrated and disinterested. Something as simple as learning to ride her bike turned into screaming fits and frustration. This led to me carrying her and her bike two blocks home while she hit me, bit me, and scratched me. This happened a lot.

She still can’t ride a bike.

This time last year I was feeling alone and isolated as my entire life fell apart.

Ally got kicked out of the last daycare. 

We struggled to find affordable babysitters.

I lost my job.

People blamed us for everything.

Her behaviors were our fault.

Her meltdowns were my fault.

Advocating for my child was rude.

It made people uncomfortable.

Made them angry.

Made me the bad guy.

I started writing about our struggles more openly and that is when things got easier.

Last year, I never thought that isolation would make things easier.

But it did.

I didn’t have to apologize to people anymore for my daughter’s behaviors if we weren’t around anyone.

Or stress out about what people would say, what they would think, or how they would react.

It was easier to eliminate all of that and focus on her in the weeds of grief.

I am thankful for hitting rock bottom because coming back from it has changed me.

I am not that person who apologizes to people for my child’s autism anymore.

Or the person who lets people convince me she doesn’t have autism.

Or the person that lets people make me feel like a bad parent.

Not a day goes by that I regret cutting people out of my life.

Or miss the people who cut me out of theirs.

Being a good parent is not about training your children to become who you want them to be, or who their grandparents want them to be.

It is not about being able to ride a bike.

It is not about comparing your child to other children or holding grudges against people for their child’s behavior at a party.

It is about embracing the child that you have and building them up to be who they are, even if that person is not who you dreamed they would be when you were pregnant.

This year, I have found people who get it and those people have found me. Even though it feels like we are moving forward in a way that is parallel to others, forward is forward.

Dumping Kids with IEPs into General Education Classrooms is not Inclusion

I can’t believe its November already — time for the first round of parent-teacher conferences for Kindergarten.

It brought me back to memories of last year’s conference. Pre-k 4 was so different. It was a true inclusion class run by a special education teacher and the classroom provided a lot of support and individual interventions for all of the students which set the bar of expectations high for me as a parent.

Last year’s meeting started when her teacher told me how much she loved Ally’s quirky personality. That Ally was funny, sweet, and special.

She told me all of the good things about my daughter and praised her perceived abilities to be high. As she began to discuss her areas of weaknesses, like her fine motor skills, she also mentioned that their occupational therapist provided strategies and support.

When she told me about her difficulty socializing appropriately with her peers, she also told me what she was doing to help.

When Ally lacked understanding of her tone when communicating with her peers, she told me how she practiced repeating sentences to Ally in different tones of voice and asked her to pick the most appropriate one for the situation.

To help her understand language, she told me how she taught soft words and prickly words by using physical objects and associations.

And when she struggled to share blocks with her friends, this teacher told me that she swapped the blocks with another child to physically show my daughter how she makes her friends feel when she doesn’t share. And my daughter didn’t like it, but they worked through it.

There were interventions put into place for every negative thing she had to tell me about my child’s school experience and she had a plan to help that all supported her IEP and IEP goals. It felt like she naturally knew how to do this and I admired how knowledgeable she was.

I left last year’s conference feeling confident that my child would be okay. That she would flourish there.

But Kindergarten conferences went differently.

To continue reading, please visit this post on Medium.com.

My Child is Not Broken, Our Education System Is

When we first realized that something was wrong with our child, I immediately became hyper-focused on getting her the best treatment.

We had a lot to catch up on. And that is what I thought was going to happen — that catching up would fix the problem.

Two years into Speech, Occupational Therapy, behavior therapy, and public preschool she made remarkable progress.

But since Kindergarten started, I realized that maybe I approached this wrong. It isn’t going so well and it feels like we are starting all over again as I watch two years of progress fade away into darkness.

My happy, imaginative, five-year-old is struggling to keep up with the emotional demands of Kindergarten despite how far ahead she is academically.

While she knows all of her letters and can sloppily write them and identify sight words, she can’t sit still, is constantly moving, she wants to play, wants to color, she wants to engage with everything and every one the point that she is disruptive because that isn’t what is expected of her.

She is supposed to sit, listen, be quiet, be still, and wait her turn to talk in a room filled with twenty other kids where play and natural socialization are limited. And while most of the kids have conformed to this environment, kids with big personalities are supposed to turn themselves off like a light switch.

And then there are kids like mine, on the autism spectrum, and I feel like I am trying to make my daughter sit in a broken chair.

She is having meltdowns and crying, she is falling asleep and taking frequent breaks from her classroom. I’m getting constant phone calls and communication from the school and it is puzzling because my child has a disability and an Individualized Education Plan. She is supposed to have what she needs to be successful and she isn’t.

At first, I felt like I failed as a parent. And as an advocate.

Despite trying to get her the best treatments, preschool education, and nourished her talents — it all doesn’t matter because she can’t fit into their box.

Yesterday during our follow up meeting with her developmental specialist when they mentioned trying psychiatric medication, something in me snapped. I had to change my entire life and style of parenting over the last two years. I ignored behaviors, prompted her, redirected, rewarded her for doing regular things, and had empathy when she was at her worst.

Basically, I had gone against the grain of everything I thought I once knew about parenting. Because, it’s this simple: my child needs a different approach and I accepted it, followed through on it, and it worked.

My child is happy and healthy, she is brilliant and a delight. It was one thing to put her on a mild blood pressure medication with minimal side effects because it has improved her attention and impulses just enough for us to be able to intervene with therapies. But putting a child this young on psychiatric medication not approved by the FDA for her age group, with serious risks and side effects so she can fit into a box at school is where I draw the line.

If her entire life was impacted to the point where we couldn’t manage her or her quality of life was truly at stake, I’d probably consider it. But we are just talking about school.

I found myself questioning, Is it my right to risk her heart health, metabolic function, and interfere with her brain development so she can sit on a broken chair because they refuse to fix it?

And despite all of that, my daughter comes home every day and wants to play school with her dolls. She wants to write her letters and recites songs and events that occurred at Kindergarten despite how hard it is for her to cope with when she is there. I find myself grateful that she doesn’t hate school just yet but fear what the future holds for her.

And I’m her advocate, everywhere we go from the store to school, and deciding on treatments. I never realized how hard this would be to constantly say no. No psych meds. No this isn’t working. No.

There comes a point when enough is enough. I will always work with my child to learn and grow, to cope and improve, but I will not suck the soul out of her unique personality.

My child is not broken, our education system is.

I’m tired of talking about autism and people are tired of hearing about it. But the world is going to change to accept my child, my child is not going to be drugged and converted to convenience the world.

Not following an IEP sets a child up to fail

Today I volunteered at my daughter’s school in her Kindergarten classroom for their Halloween party. It was a quick visit to drop off cupcakes and help out for a little bit.  Of course, the moment I entered the room the school psychologist asked me to visit his office on my way out. But Ally came running over to me with excitement and I tried to forget what awful news they had for me.

I helped kids make little ghosts with glue and cotton balls and they all followed directions and listened, even Ally. Several kids wanted me to know that Ally isn’t nice to them or her teacher and asked me why doesn’t she like anyone?

“Why is so mean?” a little girl wanted to know.

I forced a smile and simply said, “I promise she likes all of you and says nice things about everyone at home.” I quickly redirected them to look at the awesome ghosts they had just made and commented on their costumes.

What are you supposed to say to a group of 5-6 year old kids about autism? Are you supposed to say anything at all? I looked up and saw Ally at a station where she threaded a mummy with yarn. It seemed like she was having a good day.

And I knew a few minutes later when I heard one of the paraprofessionals asking a child not to touch that, stop doing that, you need to listen—that it was Ally, and I turned around to confirm that it was indeed Ally. The first thing I noted to myself was…they aren’t following her IEP. It clearly states on page 9, “avoid directly commenting on challenging behavior.”

Her teacher also pulled me aside after we served them party snacks to tell me about the rough start Ally had and how she didn’t even make it to the Halloween parade since she had a meltdown and had to go with the Child Study Team. That all she was asked to do was write her letters and it set her off.

And then there was Ally in front of a table of kids pointing and talking to a group of her classmates and her teacher asked me how I would handle that, since she is probably saying mean things to them right now. I walked over to the table and pulled her aside and asked what she just said,

“I told them we should have a costume contest and I could be the judge.”

I turned to the table of kids and asked them if Ally said that. They said yes and smiled. And then I felt horrible because there I was, along with the adults in her classroom, assuming she was being bad when she wasn’t. This is autism folks. When school staff can only tell you the bad stuff and they assume the worst of your child when they don’t have the tools they need to be successful.

As I got ready to leave, feeling angry with myself for ever agreeing to put her into a general education classroom, a little girl came up to me and told me that she loves Ally and she is her best friend. I noticed that she is the girl who sits next to Ally at their own table away from the other kids. This is the girl she sits with at lunch and talks about all the time. I almost cried at how sweet it is but also wondered if her parents knew she has been isolated and paired with my child because I think their child is amazing, but would they want this for their child? To be friends with the kid everyone thinks is bad. The kid that everyone thinks is mean.

After the party, I stopped by the office and her school psychologist handed me a signed letter documenting the incident from earlier. This is the first time they have ever documented anything.  It mentioned how she couldn’t calm down, she shouted, refused to apologize. All I could really say was that my child has autism and no matter how many degrees everyone has and how much they think they know about education, that Ally has specific needs that require people to approach her differently and handle her uniquely and if staff can’t follow her IEP, we have set her up for failure.

A Typical Child Wants, a Special Education Student Needs

Pexels.com/Pixabay

I overheard two parents complaining about the associated costs to their district to send a child with a disability to an out of district school. They were obviously involved with their local board of education. And they clearly didn’t realize they were in the company of a special needs mom.

Why should a child who can’t behave take fifty-thousand-dollars away from our budget? What about our technology needs and the sports budget? How is it fair for our kids to make sacrifices for a bad kid?

He was in my daughter’s class last year and that kid was a royal pain in the ass. His outbursts were downright dangerous.

His parents need to just discipline him.

Maybe if he were homeschooled, they’d have to.

And there is nothing wrong with our special education program, our teachers are qualified to teach him just fine. It’s his behavior that is out of control and we are all paying for it with our kid’s sacrifices.

That last part lingered on me. Their kid’s sacrifices. Their kid’s sports. Their kid’s technology.

Read more here.

How Does Autism Affect my Child?

I spend a great deal of my blog writing about how my life is impacted by my child’s diagnoses. And it has changed my entire life to say the least. It has changed the person I am today and the mother I am today and the mother I wanted to be. But this post isn’t about me, it is about her.

How does autism affect my child?

I wish I could say it didn’t. But she is at a point in her life where she has an awareness of the world around her. Not a lot of awareness but enough to realize that our world is different and it separates her from people.

She spent her summer at home with babysitters when she wanted to go to camp. This is probably the most devastating part for her, being isolated from her peers.

While she centers most things on her own self, she often notices little things that make her curious or things that make her sad. She asks questions. So not only does it separate her, she wants to know why.

For instance, she has experienced a great deal of anxiety over the past month as she stressed out about Kindergarten. Do you know what her biggest concern was the night before? Will anyone like her? Will anyone be her friend? Will anyone play with her?

Her tiny little voice asked those questions. Do other five-year-olds worry about these things daily? Do they spend more time isolated from her peers than without them?

Do other five-year-olds ask analytical questions like: Was Jesus a Zombie?

Now as she assimilates to her new routine of making it through seven-hours per day at school, I am left asking again, how does autism affect her?

Well for one, when she can keep it together but only for so long.

Only until the lights are too bright or she is trapped in the gym with kids pounding basketballs against the floor.

She has experienced after-school restraint collapse. So basically, she has to come home after school to veg out.

Transitions are tough for her whether they are life transitions or just changing activities. It seems that learning to tolerate typical activities is what makes her appear to thrive and sometimes she puts on a good show and sometimes she doesn’t.

She needs things to help her get through it, like sand timers for time-outs, brushing teeth, and so she knows how long I will brush her hair.

While she tries so hard to hold it together, she can’t always succeed nor can she be expected to because this is how it affects her. Sometimes she is completely incapable of functioning and needs a break from demands, a mental health day.

Sometimes she has to be told twenty times in the morning to brush her teeth and get dressed and sometimes she just does it before we ask.

She still puts her shoes on the wrong feet.

She won’t wear pants with buttons.

Doesn’t tolerate sweating or her clothes being wet or dirty.

Her entire life is impacted by something people can barely see and some days she can put on a good show, and others she fails at pretending to be typical.

This is just the beginning of what is going to be a very long journey for her.

My Hardest Truth as a Working Autism Mom

The first parent support group meeting I ever attended left me feeling hopeless and totally alone. It was after my daughter’s back to back daycare expulsions that left me desperate to seek help.

Desperate to figure this out.

In that meeting, I wanted to know what they did with their kids. Where did they send them? Are there places that can handle kids with autism? Where are all of the autism kiddos during the day?

What I found out was that many of them had at least one parent stay at home. There were moms in that room that were teachers, nurses, and more. I felt sicker with each story they shared.

Those parents warned me that I would need to go on FMLA, but be prepared to lose my job afterward.

Be prepared to sell your house, dip into your savings, and possibly even your retirement. You’ll soon learn that money doesn’t matter. That nothing else matters.

Be prepared to pay someone hourly or to stay at home because kids with autism can’t handle group childcare settings. And childcare settings can’t handle them. That’s what they said to me and I never forgot it because it hurt. And it sounded bonkers to me.

I left there feeling defeated and angry. Angry about how they gave up so easily. Angry that they were okay about not having access to affordable childcare. Defeated by the eye of this storm called autism. Defeated because I was hoping for support, not to see my entire life fall apart through their crystal ball.

Why weren’t they fighting harder for inclusion? Or creating programs for autism families? Changing laws? Why weren’t they filing ADA complaints? I didn’t understand it at all. I felt like I couldn’t connect with anyone there because I wasn’t willing to give up my career and dedicate my entire existence to autism. And did that make me a terrible mother?

I spent the next several months bringing my child to behavior therapy, speech, OT, and we medicated her with drastically promising results. After doing my research and working with an ABA company, I sent her to daycare again with supports because it was still half the price of paying for a nanny and the thought of my preschooler sitting home all day isolated from her peers was too heartbreaking for me to even consider. I also couldn’t afford it.

Within the first few months, she was finally able to adapt to going to daycare and she let me leave without tears. She was finally able to participate in activities and follow some of their rules and routines. But there were still issues here and there, mostly when her therapist wasn’t there.

Needless to say that over a plethora of things, our enrollment was yet again terminated after sixteen months. But this was progress, she had made it longer than ever before and she had learned to assimilate into their routines. We had truly made progress. This gave me hope for the future and as she gets older and I believed, the way typical parents do, that this would get easier.

At that point, there were no more daycare centers left to try so we searched for and hired another nanny that became impossible to pay for after the first few weeks.

After a few short months, I found myself out of work and spent the next eight months at home with my daughter. I taught college courses part-time while she was at her half-day public pre-school program but it wasn’t nearly enough to get by or to make a dent. This put a lot of pressure on my husband and I felt like a complete and utter failure.

Everything I did, I did well, until this. Until being an autism parent. It was like the entire universe was working against us.

Those months were dark and that crystal ball from the parent support meeting had read true. But I still had hope. This was going to get easier. Once we have a full-day program, this would get easier. It had to get easier. It had to get more affordable. This can’t be our life indefinitely.

Over those last few weeks of summer, I noticed parents sharing in their excitement about the burdens of daycare coming to an end with Kindergarten starting. I rejoiced right along with them. I felt that in my soul.

I couldn’t wait for the summer to end. I counted down from the moment it started because we could barely get by. Between catching up from eight months on unemployment to paying babysitters it was hard.

But there was hope. I felt like we were finally going to catch a break like everyone else. There was finally another childcare option cheaper than paying a nanny.

When we got a flyer about the third-party sponsored aftercare program at school for only $263 per month, it felt like we could finally see the light at the end of this dark tunnel. Like we could finally catch up.

My nerves began to settle after the first day when I saw her make friends and play on the playground with them, I still sent her ABA therapist for support, just in case.

But on the second day, the expulsion threats started again when she ran from the group seeking peace and quiet from all of the noise. When she fell asleep on the floor.

When she cried.

When she had a meltdown because adjusting to Kindergarten is hard enough as it is, adding two hours of after-care to the mix was like pouring more water into a cup that was already filled.

I found myself physically sick from stress; an entire weekend was spent throwing up and hyperventilating at the thought of this not working out and having to go through this all over again. It felt like I had failed again at life and at being a mother.

While we have come so far, to a point where she can say she wants a break versus aggression and screaming, it feels like we are always two steps behind on whatever developmentally appropriate behaviors are expected of children her age to participate in things.

And maybe that is the problem. Maybe the system is broken and we are putting too many demands on kids these days. Or maybe it is the lack of programs designed to include kids with autism. But I kept reassuring myself over the summer that this wouldn’t happen again. But it did.

And here I am feeling defeated and hopeless, just like that day two years ago when I went to that parent support meeting because they predicted my future, one I tried to fight, with absolute certainty.

And I am tired of fighting.

If you are a working parent to typical children, please try to understand what this is like before you complain about our kids or judge us. Imagine that your child’s after school program was shut down as of tomorrow and your school district won’t bus them anywhere else other than your home. Imagine you have one day to figure this out and no family to help you. What do you do? How do you feel?

That is what it feels like to be an autism working mom. Like a revolving door that just keeps swinging at you.

So here we are again. And I’m left asking—if there aren’t programs designed to serve children with special needs, why isn’t anyone creating them? If programs operated on school property are designed to exclude kids with special needs, why are they there at all?

I could fight to keep my child in a program that doesn’t want her because it makes my life easier but what I should be fighting for is a program that works for her and helps me as a working parent because I am still not willing to give up my career and succumb to autism. This led me to one of my hardest truths as a special needs parent—that my child can’t function [right now] in a typical program after school. She needs to come home and unwind.

And while those parents in that support group years ago did try to teach me something I had to learn and experience for myself to truly understand, I still think there should be somewhere for these kids to go or at least more to support us as parents at home in regards to childcare because not working can’t be the only universal option for everyone. While I have been approved for the respite care program in my state, I want to point out that for the average family, it’s not enough. And it still keeps our kids isolated.

I truly thought this journey would get easier as she ages, but it’s getting harder.

An Open Letter to the Parents in my Child’s Class

I can’t believe it is time for Kindergarten already. It seems like just yesterday that our babies were born, rocked and held.

It probably feels like forever since you held and rocked your babies.

Or forever since you carried them surfboard style out of a public place.

And forever since they had a toddler tantrum in front of everyone.

They can probably sit in restaurants and enjoy new adventures out in the world with you.

Like family vacations, movies, sports arenas.

Many of you probably spend your time out in the world living your best life.

I’m not sure what you are going to hear about my child but I am sure you will hear something.

I hope they remember to tell you about the good stuff.

Like how she made your child laugh when they were crying.

Or how she colored a portrait just for them.

But they might only remember to tell you that she cried or screamed today.

That she did something out of the ordinary.

That she threw her crayons.

Or that she has a special seat where she gets to take breaks.

You may question why she is in the same class as your child instead of in a special ed classroom.

Why does your typical child have to put up with my child on the autism spectrum who sometimes screams and swipes her work off of her desk?

You may even take this question to the school.

She is there because she is brilliant. That is a fact, not my opinion as a mom.

She is there because she needs peer role models to help her continue to learn and improve her social skills and behavior.

She is also there because she is a person. A person equal to your child and she has the right to be included with her typical peers; you probably have no idea what we have been through so I won’t judge your initial concerns. 

You should know that our worlds are probably very different and that my daughter is beautiful, funny, and kind despite what you might hear or despite what she might say.

While it probably feels like an eternity ago for you, I still have to hold and rock my child when she has a bad day. When she can’t calm down or stop crying.

We still have to carry her surfboard-style, screaming, from public places without warning. While it is not as often as it was when she was younger, it still happens.

She still has what appear to be toddler-type tantrums. But actually, it only looks that way because she has an “invisible disability”—they are actually sensory meltdowns.

While you are watching fireworks with your children, mine is covering her ears and asking to go home.

When your child is swimming in their pool, mine is hiding in the house from lawnmowers and motorcycles. I also have to cover her ears in public bathrooms with hand dryers and sometimes she won’t even go inside.

And your child is probably going to come home and tell you about things like this that happen at school.

While your kids play soccer and little league, my daughter gets several hours of behavior therapy, speech therapy, occupational therapy, and visits doctors.

And we’re trying. After failing at dance, gymnastics and soccer shots, karate finally stuck. So we’re getting closer.  

My child just requires a different approach. An approach that should not isolate her. I think all of our children should be looked at as individuals.  

You may push your child to write better, faster, or more often while I sit with mine, building her up and redirecting her from tearing the paper to shreds when she doesn’t complete the task perfectly the first time.

And she is finally starting to get it.

Her typical peers in this class lead by example showing her patience and modeling behavior. And in return, she teaches them about differences and tolerance.

She is also the funniest kid they will ever meet and her giggle could melt a zillion hearts.

We do everything possible to make her experiences at school positive. At home, we work on social stories, scenarios, and practice appropriate behaviors. We have to correct our child more than typical parents and overcorrect behaviors with constant prompting and it is exhausting.

I also have to remember to give my child medication twice a day, and water her like a plant every few hours so she doesn’t get dehydrated from it.

We spend our nights and weekends in therapy.

I do all of this so that she could be here, in this class with your child and other children. All I ask you for is to be kind. To be patient. To be understanding.

Sincerely,

Exhausted Autism Mom