The First Person Who Said It

As goes the public domain of the internet, all bloggers get trolls on their pages. I handle them by deleting their posts and shutting them down. I deleted four comments this week because I’m too busy to engage with people who can’t be reached. I want to be here for all of the moms who have emailed me and reached out to tell me how my story has helped them. 

This leads me to why I share our story. Why do I expose myself to the crazies of the internet? 

Why am I outing us and our child’s business and life out into the world? Why? 

I do it for every child after mine. 

For every parent who is hiding in a closet crying after their child goes to bed. 

Photo Credit: Pinterest

About 10-15 times per day, unique visitors view my page and solely read the posts about my daughter’s daycare expulsions. These visitors are typing “kicked out of daycare” into their Google search engines and finding my blog. This means it is happening a lot and all over the country (and globe). And it is NOT okay. 

Parents of children on the autism spectrum don’t have access to affordable childcare options and parents are losing their jobs over it. I was that parent. I get it. Families should not go through what I have been through. 

I share our journey because our experiences with discrimination are not okay. I do it to document that children with Autism have been forgotten along the way in the advances of civil rights. 

Having advanced degrees in Writing and Literature, I know that people sharing their stories is what drives change. The world needs to know about the issues before we can even begin to make progress towards meaningful change. 

Ally at 2.5 years old, being silly

Earlier I was thinking about the first time anyone ever said something discriminatory to me about my child and I want to share it because it was a daycare provider. 

When my daughter was two and a half years old, we put her into a new preschool for four days before I got a letter requesting a meeting to discuss her enrollment. 

The director of “The Elephant School” said things to me that I’ll never forget. Let us call her “Shannon” and she told me there was something very wrong with my child. Just like that. “There is something very wrong with Ally.”

She then continued and said that her center was not a good fit for us because Ally needed too much individualized attention. Let that sink in. Too much individualized attention. At the time I had no idea what she meant. All kids need individualized attention. 

She then went on to tell me that she could always tell right away when she gets a child like Ally. A child who won’t ever make it in a regular Kindergarten class, who will always need a small class and individual attention, she added. 

“Shannon” was the first person to ever say anything about my daughter not being okay and she had only known her for a few days. She made assumptions about my child’s abilities three years into the future as if she had a crystal ball. 

To this day, I never forgot it. 

Those of you who are enraged reading this right now, don’t worry. I complained to their corporate, left messages for the owners and they didn’t care. I never received any acknowledgment from the owners or a refund on the unused tuition for days I paid for. All I got was, “She shouldn’t have said that” from their compliance person who returned my call and claimed to know all about my child. All she cared about was asking me whether or not my child had an IEP or a 504 plan so she could check off a box on her report. 

Years later, “Shannon” is still the director and she is still telling parents that their children don’t belong there. 

But this post is not just about just “Shannon’s” inappropriate and discriminatory comments towards my toddler, this is about documenting our journey. Our experiences. Our hardships. Things are never going to change until we start being public about our real-life experiences, especially ones like this.

While I would love to throw a glass of water at that woman’s face and tell her she was wrong, that Ally is going to a regular Kindergarten class next week and that she did function at daycare after that, that she has come so far since she was two—it wouldn’t change anything unless it meant that she could never treat another family that way. She was the first person and she won’t be the last to criticize my child.

When it comes to caring for our children, many can succeed in the right environment. If and when that environment exists. 

Ally functioned when teachers acknowledged her when she walked in the room. 

When teachers took the time to ask why she was upset. When they treated her with kindness and compassion, even when she was in one of her moods. 

My child is a social and remarkably intelligent little person who has every right to be part of the community without judgment. Without people like “Shannon” out there setting them up for failure. 

As a writer, it is my obligation to advocate and record this. 

So I write this today not about one specific person or place because “Shannon” is long gone from our life, but about all of us who remember that first person who tastelessly judged our child and fueled the fire to our fight. 

Share your stories. Make Noise. We can’t change a situation no one knows exists.

Goofing around in the OshKosh dressing room, 5 years old

I Don’t Want to do this Anymore

I don’t want to do this anymore. 

Is it okay to say that? 

Probably not unless I am talking to another special needs parent. 

But it’s ten weeks into summer and I am counting down, 16 days until school starts. I’ve actually been counting down since the day before school let out. 

We’re in the home stretch now. 16 days until my sanity can slowly return over the weeks it takes our kids to transition back into their routines. Like the settling of a storm, we will put our lives back together as the casualties of summer find their way ashore. Back to reality.

Most families spend the year counting down the days until summer vacation. Days where they can sleep in, go on family excursions, and endure that time of year that fosters togetherness and fun. 

But most of us with kiddos on the spectrum do the opposite, we count down the days until summer is over because our lives are turned upside down and inside out.

This has probably been one of the hardest pills to swallow—going from someone who loved summer and vacations to someone who craves an eternal loop of Fall. I could live September thru December all year long, over and over again and keep my sanity.  

I never though I’d be someone who goes into full-blown panic mode come May. Someone who gets overwhelmed by anxiety and fear of the unknown. 

Fear of how we are going to make it out alive after three months of our kid’s unstructured free-time. Trying to balance work and home during these months.

Twelve weeks of meltdowns and total chaos when it should be filled with laughter and fun. 

But we get good days and bad days.

Short trips with ice cream cones if you wait in line to go on rides. Prizes for being good at a BBQ. We have to reward our kids with extra rewards when the experience we want them to behave for should be the reward itself.

But this is our life. 

I’d love to take my kids on a boat to explore the open ocean or go rafting down a stream but they would never go for it. They’d never enter the water. Instead they would scream and cry and want to be at home in their rooms on an iPad or an Xbox, where they know what to expect. Because that’s what it’s all about. 

My kids need to know what to expect which is also funny considering as parents, we never know what to expect when it comes to their reactions to new experiences. 

There are days throughout the summer that we enjoy, don’t get me wrong.

We visit the beach, we BBQ, we go on little adventures. Sometimes it goes well and sometimes it doesn’t. It’s like flipping a coin.

Those two weeks before Extended School Year Starts and the week after it ends are usually okay.

It’s once they realize it is not just some long weekend is when they begin to fall apart. When there is no routine to follow, no consistent social settings for them to be a part of, and the redundancy of being home everyday in and out with babysitters. 

Sending them to day-camp for the summer would be ideal if such a place existed within a commutable radius of my home and place of work. One that also covered the entire work day. And it seems anything remotely doable runs parallel to the ESY calendar. Isn’t that ironic?

It’s August that is the hardest.  August is when our whole family falls apart.

For us, summer means splitting up vacation weeks to watch the kids separately this month and paying babysitters throughout the rest. It’s a time when we cut down on therapy when they need it more than ever but it’s just not reasonable to pay for therapy and babysitters at the same time. 

After surviving this summer, I look into the future and fear this can’t be it. This can’t be our eternal existence for the next decade. I can’t spend over $6,000 per summer on childcare while my kids spend their summer rotting at home alone with babysitters. It just feels wrong. 

I feel like I just can’t do it anymore. And that I don’t want to do this anymore. I want to enjoy summer and take a family vacation from this life. I want to take a week off to be alone. Or alone with my husband. Or just alone.

In 16 days, I’ll probably miss them and write about it.

A day with my girl

My daughter missed me this week and asked me why I have to go to work. And why she has to sit at home with a babysitter. 

A babysitter that doesn’t take her anywhere. 

And I’m honest with Ally, I told her it is because I said no. 

Today I made time to have a day with my child. To give her memories and do something fun together so she could remember this next time she misses me while I am at work. 

We went to the sensory viewing of The Lion King this morning. Since she sat through most of Toy Story 4 last month, I felt more comfortable going with her alone. 

She tried movie theater popcorn for the first time and was probably the first kid ever to tell me she did not like her blue slushy. 

The first half of the movie went as perfect as it could go. She laughed at the funny parts and cried when Mustafa died.

But a few minutes after that she was lost. 

She giggled uncontrollably, kept getting out of her seat, scripted, danced in the aisle and we took a few walks to calm down. But that was to be expected and was exactly why we went to the sensory showing. 

She spent the last fifteen minutes playing with another child and they danced in the aisles together but overall, we made it through another movie without too much of a scene. 

The mom of the other child complimented Ally afterward for how sweet she was for hugging her daughter and how impressive her language skills were. I have that kid where people ask me confused,

“Is she on the spectrum?”

I always nod and wish they knew more about our life to see there is a lot going on beneath the surface here. 

As we left, Ally remembered that I told her we could get haircuts together and then go shopping. She said she wanted to go and so I drove across the street to the mall and they just happened to have two stylists available to cut our hair. Thankfully we got someone with patience who didn’t mind Ally talking in voices and counting and babbling about random things. 

At that point, we had been out for about three hours and I probably should have taken her home, but she seemed fine.

At Old Navy, she picked out “Lion King” dresses for both of us; she loved trying them on in the dressing room. She cried briefly in the bathroom when someone used the hand dryers but I felt like we were passed that. she covered her ears and seemed fine once we left.

As we headed towards the line she started hiding in the clothing racks and its starter, as it always does. She kicked me in the line and told me she was going to send a stampede to get me like Mustafa if I didn’t buy her a candy bar. Out of nowhere. I absolutely was not rewarding this behavior and said no. 

She started running and I had to and chase her. We left the store and she cried because we forgot her dress. I told her when she calmed down we could go back and buy it. And I really wanted to buy it because the memory of us picking them out was so precious. 

On the second round, she started in again while we were in line and I had to hold her wrists to prevent her from leaving. She kept twisting her body and asked me what would happen if she twisted her wrist and I told her she would break her wrist and we would need to go to the hospital. I had two people in line ahead of me and she started screaming and throwing herself on the floor. The glares and looks started because my child was being a brat, or so it looked. I let her cry on the floor and she slapped herself in the face while I paid for the dresses. 

We rushed out of the store and passed the jungle gym area where she threw herself on the floor. She wanted to play. But there were toddlers and babies in there and I was already horrified and on flight mode. 

She kept trying to run ahead until I found myself carrying my unruly 5-year-old to the car. Thank god I found a close parking spot this time. 

She kicked, screamed and threw her shoes at me while I tried to get the car and her to cool down. I played her favorite Taylor Swift songs and got her somewhat settled. And at that moment, I felt reassured of my decision and why babysitters are not allowed to take her to public places like the mall. This is why. 

I struggled to carry her and soothe her and I’m her mother, the person who knows her best. Outsiders don’t realize what a burden and responsibility this could be. How in the blink of an eye, she could be gone.

How #AutismMoms use public bathrooms

Many don’t realize that when you turn your head for one second she could run. And she does not always run, it’s like she knows when to do it when I least expect it but since I have to be Ready to Run all the time. 

On my way home I wondered if we are ever going to get to have a mother-daughter date that doesn’t end like this. 

I wish for simple things like this. Simple things typical families take for granted. 

We’re all the same

Before having my daughter, I had two miscarriages. They were years apart and left me fragile and vulnerable to fear.

Fear that it would happen again and fear I’d lose her after she was born. Later. Someday.

Fear that kept me up at night.

Fear that still keeps me up at night.

While people are finally starting to open up about their experiences with loss, they aren’t talking about this anxiety that comes with parenting.

At five years old, I opened myself up to trusting more people to watch her and care for her when I work. That was hard but I had to let go for my sanity.

For my husband’s sanity.

For all of us.

This year, I even spent my first night away from her, ever. I feel like I have finally started to progress away from that fear.

Until this morning.

There was an article I came across by accident in the American Journal of Public Health that listed 36 years old as the average life expectancy of a person with autism. The first thing I told myself was— well she doesn’t have that kind of autism.

And then I read an article looking for those labels that I hate, the ones I sometimes cling to for both hope and denial: high functioning, low functioning, verbal, non-verbal, mild, moderate, and severe. They were all missing. No numbers. No levels. There was no differentiation and autism meant all autism.

I wanted to declassify our kids from that statistic like the women and children boarding the lifeboats of the Titanic. Like our family doesn’t drown. That can’t happen to us.

 It would have made me feel better to know we were safe from such a thing.

But we’re not. We’re all the same.

It’s like we are all on this sinking ship and every time we think we can’t sink any deeper, things like this happen. Reality checks flood us.

While autism itself does not cause death, other accident based factors complicate the situation such as suffocation, asphyxiation, and drowning.

Now I have to worry about this. This crippling fear.

My daughter is afraid of water and while I want to think she won’t ever go wandering to explore unsupervised bodies of water, I can’t be entirely sure. This put swimming lessons back on my to-do list.

And last week I lost it when she put a plastic bag over her head because she thought it was silly.

Sometimes she sleeps with a blanket over her face because she is afraid of the dark and I have to pull it down throughout the night.

Now I have to worry if she truly understands.

Accidents. Children with ASD die from simple accidents. All the time. They are 2.5x more likely to die than their peers. This reminder is a kick to the gut just when I thought things were looking up.

Then I read some more.

The British Journal of Psychiatry found that the leading causes of death in those with ASD were heart disease, suicide, and epilepsy.  

I played that game with Dr. Google. The one where I tried to find the answers I’d rather hear. But it didn’t work.

They found that the suicide rate among those with ASD was 9 times higher than the general population. Females with milder forms of the condition are the highest likely to commit suicide.

There it was. My daughter put into a box.

The labels and warnings on all of her medications flashed through my mind.

That one week we tried Ritalin and I had to tell myself not to worry about the warning it carried about leading to an increased risk of suicide now or later in life. Later in life. Her chances are increased because I gave her Ritalin for one week when she was young.

While I don’t know anyone personally, I have known of several local families who have lost their young children, teenagers and young adults to accidents and suicide.

I read about it too often.

One recently shook me. A child eloped from their own home when mom wasn’t looking. All I could think about was how exhausted she must have been; nobody gets how exhausting this is. The awful comments people probably wrote on the news article. How all of the alarms on doors and preventative cautions failed at that moment. The blame she probably puts on herself to this day.

I have spent so much time worrying about myself.

What if something were to happen to me? What if I die? Who will be able to handle my daughter? And her meltdowns? How will her meetings and evaluations go on without me?

While I spent so much time being paranoid about something happening to me, statistics have rocked me back into being vigilant with my child.

But I also need to stop harvesting stress and anxiety.

Sometimes this journey is like driving around in an endless cul de sac. Here we are, back at square one.

Knowing these stats has changed me but I’m not going to dwell.

In the end, we are all the same. All of this from autism to accidents can happen to any family.

Our Home, the Bunker

Lately, I have been reflecting on how much time our family has spent at home over the past two years. It has become such a routine that we hadn’t noticed how much time actually went by when we avoided going out.

Avoided placed where we would have to chase Ally or leave abruptly because of her behavior.

There was a time when we were always going to do things, before our daughter was born. That time feels like a long time ago, and maybe it was.

Sometimes parenting a child with additional needs feels like living in an underground bunker.

Not to get away from a natural disaster.

But to o hide from the world and their judgement.

And while the world moves on above us, we find ourselves stuck down here by choice.

It makes things easier. On us. On everyone else.

 In our safe space.

But as you can imagine, the air gets stale and we want to come up for a breath of fresh air.

Whenever we find a step out of this autism bunker, we get pulled back down by something.

By meltdowns.

By self-injury.

Hitting.

Spitting.

Screaming.

Something else.

Ally started Extended School Year yesterday. In order to convince her to go, we told her it was a super-secret special Kindergarten class that only she and a few select other children received tickets to.

Yes, I had to lie and make it sound like an exclusive event because she doesn’t understand why she needs to be there. To make her feel in control.

Right now, in whatever phase we are in, she will consume or do anything associated with the words “super-secret.”

She loves daddy’s super-secret cookies.

Mommy’s super-secret lotion (and make-up).

Super-secret summer Kindergarten.

Maybe I forgot to label her summer babysitter a super-secret somebody. Not that it would entirely matter because no matter who her babysitter is, she eventually gets comfortable enough to treat them the way she treats me.

She calls them names.

Throws things, spits, and screams at them.

Her newest behavior is she locks herself in her bedroom or runs away after exiting the school bus.

The only thing my poor child doesn’t understand is that no everybody is going to provide her with the super-unconditional love that I do.

Not everyone else can shut off their emotional reactions to her words.

Or her aggressions.

Or her personality.

Yesterday after school, I used FaceTime from my desk and walked her through finding a snack.

Walked her through using nice words to her babysitter and friends at school.

Explained to her that locking herself in her room is not safe.

That she needs to be safe because I love her so much.

Daddy loves her. Grandparents love her. Everyone loves her so much.

I even tried bribing her with screen time for good behavior with the rest of the day.

But sometimes, despite every effort we make including the best of bribes, she can’t pull herself together.

And on those days, we need to go back inside our bunker until the storm passes and accept that we will need this safe space until sometime in the unforeseeable future. But we can dream about the sunny days and hope there comes a time when we won’t need to be here forever.

To the Parents Avoiding an Autism Diagnoses

There was a time when I told myself my daughter was just fussy.

That she was in her terrible twos.

Like really terrible twos.

Like the most epic there ever was of terrible two.

When I found myself stuck with her, out of childcare, on FMLA— I was forced to face it.

Forced to accept that something wasn’t right.

That this was more than her just acting like a “two-osh bag.”

That this wasn’t sass or a phase.

This was an alarm at the end of a series of red flags I had been colorblind to.

But I was forced to face it and I’m glad that I did because our lives have changed so much.

Copyrighted Photo, do not copy.

My daughter was diagnosed at three. Literally the day after her birthday.

She should have been diagnosed at two but I couldn’t admit there was an actual problem at the time.

But three was still young enough to make meaningful interventions.

Looking back now that she is five, I can say that speech therapy helped her communicate so she could ask for a snack instead of bang her head against the wall.

So she could ask for help instead of hitting.

She could stop biting herself when she was frustrated.

While she still does things like hit herself, throw things, and scream, she can be redirected away from those behaviors and towards using words.

Three was also young enough that she learned to identify her emotions and engage with her toys in play therapy. By play therapy I mean an actual play therapist that came into our home and my own combination of letting her watch other kids on YouTube Kids model playing with their toys.

She is probably the only kid I know that actually appropriately plays with her toys for hours and hours.

I admit that I am not completely sure of her progressions made from OT but I still feel like she will be cutting with scissors and properly hold a pencil without prompting soon. So that is something.

Most importantly, two years of ABA therapy has taught her how to be safe and helped us leave our home.

Helped her eat a bigger variety of foods.

Changed our lives.

So three was young enough to make meaningful interventions.

 Applied Behavior Analysis Therapy is fully inaccessible without a diagnoses and prescription for it.

Two years ago, I couldn’t imagine being where we are today. And it is because we got help and set up interventions early.

But my stepson, now a teenager, didn’t get help until he was seven-years-old.

He never got ABA therapy, speech, or OT.

He also missed out on inclusion because he has been going to school out of district since first grade.

Sometimes I feel like we were those parents.

Those ones that refused to admit that anything was wrong.

When my husband’s ex-wife first told us about his autism diagnoses (then labeled PDD), we were angry. My husband and I blamed her and we disagreed because he was smart, he talked, and we blamed her untraditional lifestyle for it.

I am not sure I ever truly understood it until we went through this with our daughter.

Now we are at a point where he is entering high school and I reflect on all of the interventions he didn’t receive and wonder if he will be ready.

Ready to learn next to his typical peers.

Able to manage socially with peer pressures and situations he might not be prepared for.

Parenting young children with autism and teenagers brings completely different challenges.

If I could go back, I wouldn’t be afraid of the diagnoses because the earlier a child gets interventions, the more successful they could be. And just because a child doesn’t have a diagnoses, doesn’t mean they don’t have autism.

No, Private Childcare Should Not Monopolize the Industry for the Business Community

This morning I came across an article in the free little newspaper attached to my weekly bundle of coupons. It caught my attention because the thought of the local business communities being outraged over public schools wanting to open their own childcare centers struck my last nerve. 

My blog has become dedicated to advocating for children on the autism spectrum. In my experience, the biggest source of discrimination against my child has been at private daycare centers. I get 10-15 unique views on this blog per day from Google search engine keywords “kicked out of daycare” and have been saying it for two years now that we need public or not for profit childcare options available to families, especially children with disabilities. 

There are so many advantages to having access to programs like this that the excuse of it hurting someone’s business is completely and utterly irrelevant.

If such programs were school-sponsored, they would be able to better accommodate students who need extra unlike their private counterparts could. 

Many parents who have a child on the autism spectrum have to leave the workforce to become full-time caregivers. You know why? Because private childcare centers won’t serve them. They end up out of options and unable to afford full-time babysitters because “Mothers of children with ASD work fewer hours per week and earn 56% less than mothers of children with no health limitations” (AutismSpeaks.Org). 

If women are making less, how can they afford more? Do you know who would HAVE to serve them? Public childcare centers. It wouldn’t be as easy as another parent threatened to stop doing business with them so your child has to leave. That wouldn’t fly in a public childcare center. 

Do you know the impact this could have on families like ours? 

Families who, “On average, autism costs an estimated $60,00 a year through childhood, with the bulk of the costs in special services and lost wages related to increased demands on one or both parents” (AutismSpeaks.Org). 

Families like ours are spending thousands and thousands on babysitters while our children are trapped in our houses like animals in cages. 

Segregated from their peers. 

Segregated from pretty much everything. 

The ADA has hundreds of cases against private childcare centers that discriminate against children with extra needs. 

Unless businesses are going to step up and stop throwing our children out, then they need to drop their greed-sourced outrage and let the world of childcare finally be available, affordable, and fair to all children and families who need it.  

Childcare has landed on the second largest bill that families have next to their mortgage or rent. If families are paying for childcare, wouldn’t it be nice to have an option where the money goes back into the schools as opposed to lining the pockets of an owner? That should be our choice, not forced upon us by businesses. There are always going to be those parents that want to send their children to fancy private schools, the same way they do for elementary, middle, high school and college. There is plenty of room for all options and competition in the industry. 

In my opinion, not allowing public schools to run childcare centers violates the rights of children with disabilities who need to participate in programs, programs that are currently scarcely available. 

Superintendent’s Response to my preschooler left on highway

Some of my long term followers remember what the past year has been like. Between our final childcare expulsion, my daughter being left on a major highway by the bus company, and me leaving my previous job– it was extreme stress.

Well, what I did not share was that the Americans with Disabilities Act (ADA) and Department of Education in Washington, DC both responded to my complaints back in the Spring.

The ADA wanted to enter into mediation with our previous daycare provider, that I reported for both terminating her enrollment after not addressing a serious safety concern (i.e. not supervising her on the highway) and they [the ADA] wanted to investigate the segregation of children with special needs into one classroom that I had provided documentation on.

Within the weeks I had to sign an agreement to enter into mediation, a few things happened. First, I was offered a full-time position with a local college that I had been excited about which escalated my need to figure out childcare arrangements urgently but I also didn’t have time to go through the proceedings.

Second, I realized that fighting for a placement that had endangered my child was not in the best interest of my child and was not the fight I was looking for. Why would I want her someplace that didn’t want her?

The third reason I decided not to move forward was because I knew how this goes. I would have been forced to sign away my rights to share my experience with others and as a writer and mother of a child on the autism spectrum, I refuse to even consider doing so ever again.

The representatives I had worked with was upset for me that I had decided not to move forward, but they understood.

My experience with the Department of Education was a bit different. Surprisingly different since they were the ones legally obligated by my child’s IEP to keep her safe.

Providing door to door service to preschool special education students is something that my child’s case manager, child study team, and local transportation company verbally promised me was “procedure” here in New Jersey. My case manager insisted that I didn’t need to have it written into her IEP but basically, in the end, because it was not in her IEP, they were not at fault for not following her IEP or endangering my child and we didn’t move forward. While I did have written documentation stating that it was procedure, again, I closed the case and prepared to go back to work. I wanted to move forward and solve my daycare issue at a higher priority to return to work full-time.

With that as my goal, I decided to reach out to our school district’s superintendent. While I made a scene with the bus company and daycare about what had happened, I realized that I never took it as far as reaching out to him with all the chaos that went down and well why not? He should have known all along. Why should I [or anyone] ever be in this situation when my child was put into direct danger?

Below is a copy of the first letter I wrote with people and places marked “X” for privacy.

Hi Mr. X, 

I am writing to urge you to expand the childcare centers that our district transports students to after school. 

Specifically, I am asking to make special accommodations to transport my child, X, to “X” on X Rd in X, NJ for just 16 days during the Extended School Year program in July; She would only need to be dropped off there after school. This camp program is less than 3 miles away from our home school at X, which I believe to be a reasonable distance since my preschooler is banned from attending programs at X and X. 

My daughter fell and cracked her head open at The X School on Rt X when she was two-years-old and needed plastic surgery. At the time, the owner refused to provide proper insurance information for medical reimbursements and her hospitalization which forced us to enter a legal dispute with X that resulted in her removal from the school. 

She then attended X Nursery School for over a year until they were caught not supervising my child, who has autism, at the bus stop. Before the situation could be rectified between the Bus Company and X, the owner of X, JL, terminated X’s enrollment stating they “can’t meet the needs of the child.” 

Furthermore, it should be brought to your attention that the bus stop at X is a safety hazard for all preschoolers and young students receiving special education services. During the first two weeks of the 2018-2019 school year in September, X Township Transportation (Bus #X) dropped my preschooler off on route X and refused to pull up to the front door as arranged. My child was witnessed just feet away from the major highway without supervision—Can you imagine seeing a 4-year-old unsupervised on Route X? What were they going to tell me if my child was struck by a car? And it happened more than once. 

To no fault of her own, my daughter has suffered because of these limited options. 

As mentioned earlier, my daughter X is on the autism spectrum and was receiving private ABA therapy services for 25-30 hours per week (paid for by me) in a childcare setting that has complimented her current special education placement at X Elementary. 

Since losing her placement at X, I was forced to leave my job of eleven years causing our family great financial burdens. 

My goal as a parent is to do everything I can do for my child to help her be successful. 

Since she is entering Kindergarten in the Fall with plans of being mainstream, this summer is a critical time for her to work on her skills. I need her to attend this camp to continue working with her ABA therapist and I need to go back to work full-time. 

Nobody should be in my situation with a preschooler that is banned from every daycare center in town. I know that X is not a big town filled with tons of resources, but X Town is and we should be able to use their local daycare resources that are such a short distance away, if not closer than some of our own. 

Please consider this. 

Sincerely, 

Parent X

That was my first e-mail sent on May 2, 2019. Below is his response:

” “

Nothing. He did not respond.

Well fellow IEP parents…the fact that he did not even respond to, comment on, or look into the complaint about leaving a 4-year-old on a state highway is frightening. The next time I need to contact the superintendent, it looks like I will need legal representation to do it for me. Should anything like this ever happen again, lord save anyone who has to deal with me afterward.

I re-sent the e-mail on May 24, 2019 with no response. Since about two months have passed, I assume there will never be a response. So here I am… on social media.

As for my child, she has to sit home with a babysitter, at an astronomical cost to me, since there is no transportation for her to get anywhere else. This is our life. This is the awareness that I want to spread today because this is bullshit.

Update: October, 2019. This guy won Superintendent of the year for South Jersey. 🤦🏻‍♀️

Going out to eat—37 steps in 45 minutes

Followers often private message me with comments about how we take our daughter out to restaurants. But it is not as easy as it looks in the photos I post to my social media accounts.

We learned when her brother was young that it took practice. Going to restaurants was something we had to do over and over again before he understood how to behave. 

There is a lot of background efforts that go on behind the scenes that we don’t often talk about.

For the past four years, we have gone to our local Bahama Breeze restaurant for my birthday and every year my Facebook timeline reminds me of my daughter’s social decline.

Looking back at last year, she sat and colored while bopping her head to the music.

Having a summer birthday, we usually sit outside and listen to live music while we dine with the kids and I drink exotic cocktails and eat empanadas.

When she was three, videos reminded me of her dancing and giggling at her French fries. She was so happy. So free.

Seeing our table next to the white fencing, I also had a vivid memory of how she climbed through the barrier fence and left the restaurant while I struggled to get past the gate and run after her. I had a foot injury at the time. That memory spiraled into what a rough year 2017 was with daycare expulsions and evaluations.

Looking back at our two-year-old Ally, she clapped and danced in the middle of the restaurant while people sighed in awe. Her curly hair and sweet smile, she sat there happily tapping her hands on the table along with the music. I missed that little girl with all of my heart because this year, at 5, she told us that music without words is stupid. That steel drums are weird.

She spilled water on her lap with her first sip of water. It was a covered cup with a straw and she still spills it. Other kids her age are fully drinking out of cups without lids but here we are—still working on this.

And of course, this spill happened at the one and only time I ever left the house without a change of clothes.

And of course, the one and only time I ever wanted to find a bathroom with a hand dryer in it, there wasn’t one.

Ironic isn’t it? I spent a good part of two years avoiding public bathrooms with loud hand drying machines (which felt impossible) and the one time I wanted one to dry her clothes, it was nowhere to be found.

The first twenty minutes were spent crying until I turned her romper backward in the bathroom so she didn’t feel the dampness of her shorts as lucidly.

We distracted her with coloring and my husband and her brother rubbed her face, pet her like a little cat. It soothed her enough not to annoy people around us.

For the most part, we usually preview the menu to any restaurant before we go out to eat. We usually walk in knowing exactly what we are going to order. More than half of the time, we order our drinks, appetizer, and meals at the same time within the first few minutes. We do this knowing that we have, on average, about an hour before Ally becomes unbearable or behavioral. So in order for our entire family to enjoy our time out to eat, we have to plan to be there for under an hour.

I always bring an activity packet or coloring book and crayons. We usually save our cell phones until she has grown tired of coloring and talking. Sometimes she eats and sometimes she doesn’t. Sometimes she ate before we go or only wants to eat French fries.

As I sat there sipping my frozen mango margarita this weekend and she cried, I wanted to give her a sip to calm her down. Of course, I didn’t. But I fantasized about it. Sometimes I wonder if that is all that our kids need—a sip of our stiff drink to chill them the F out. But since we can’t do that, I plan ahead. I keep us on schedule and we take her moods as they come.

Nobody in this house handles change well

I often write about how our family doesn’t handle change well.

The kids. 

And now us. 

The other night, it was me having a mommy-melt-down after we received an automated call from our school district that informed us of their late decision to change the last 3 days of school (next week) to early dismissal days. That means that my child goes to school two hours earlier and ends before the regular time she normally goes. 

I can’t be the only one annoyed about this. 

And don’t get me wrong—I’m not annoyed that they have half-days. It is expected at the end of the school year. In fact, I specifically asked about half-days back in April and was told there would be none. That they had just approved two additional school days to make up for unplanned closures. 

But then out of nowhere, it came. 

And I am annoyed that I have to plan for childcare so far in advance since we have to hire private babysitters for Ally. This was not in the plans. With just a week’s notice, this puts me in a childcare conundrum.  

And whatever, it is what it is. I figured it out. 

But I can’t help but think about the moms that didn’t figure it out. 

That can’t take off. That don’t have anywhere for them to go. No one to help them dance to this routine of musical school schedules. 

I’m glad that preschool is finally coming to an end. As much as I want my baby to stay small forever, I am happy that she will out of my house and part of society for a full-day program in the fall. 

Being home for the past ten months has hindered her socially and set us back. 

She is in for a whole lot of change soon and I have no idea how she is going to adjust. Between Extended School Year for 4 weeks, an entire month of no school or structure in August, and then Full-day Kindergarten in September. I guess we are going to see how it goes, one day at a time. 

I’m sure many of my fellow moms are having anxiety about what summer will bring. 

Let us hope it brings joy and summer fun. And trips to the playground and not Jurassic Park.