There is No Easy Autism

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There is No Easy Autism


What I Did When My Two-Year-Old Got Kicked Out Of Preschool

We have all read this story before, because this is a common tale amongst our special needs children. I hear about this multiple times per week in the parent support groups I belong to. But I am also going to share with you what happened after my child was thrown out of multiple daycare centers. My daughter has always been advanced: she walked at ten months, knew all of her colors and shapes by two, and could even make the shapes and alphabet letters with her fingers. For her to be excluded from regular preschool is unacceptable, and the discrimination of special needs children at private daycare centers needs to end. But first, I will start at the beginning.


I remember when I was pregnant touring daycare centers. I wanted someplace clean, where my daughter wouldn’t get sick from germs, with experienced caregivers who would keep her safe from viruses and SIDS. I bought into the bullshit sales pitch when the director told me how my daughter would learn sign language during her first year, and Mandarin Chinese before her third birthday. She was going to read by four years old, and be doing math by Kindergarten. I ate that shit up and enrolled her, because lets be honest, when you are pregnant with your first child, you don’t know what you are looking at when touring daycare centers and Preschools. You don’t realize how ridiculous these expectations are.


As time marched on and we bought another house, and moved to a different town, we changed daycare centers. We enrolled her into another fancy brand-named preschool at fifteen months old. She stayed here until she was 33 months old, when moved her due to a disagreement with the owner and their high teacher turnover rates. (Note: At this point, we were unaware of our daughter’s struggles at daycare and she never missed any major developmental milestones). 


As our daughter got older, I noticed things like how bad these classrooms smelled, how sticky the floors were, and how unprofessional the teachers could be. I began to notice how they got younger and younger, and how there were more and more children in each room. I began to realize that those promises of foreign languages and advanced skills were bullshit, not just because the staff were just minimum wage workers who were barely trained in classroom management and grammar, but because our expectations of toddlers are unrealistic.


At the next child care center, I started getting phone calls on the second day of her enrollment. They were concerned that she was not adjusting well to the changes. Yes, you read that correctly—she was supposed to be adjusted in just two days. She was displaying “disturbing and disruptive behaviors” that included (but are not limited to): playing with the wood chips on the playground, “aggressively eating yogurt,” banging her head against the wall, and not sharing toys. By the fifth day, the director had called a meeting to discuss our child’s enrollment status. By that point, I had already reached out to our pediatrician, who right away referred us for a full developmental evaluation at the local Children’s Specialized Hospital, and recommended we start play therapy while we wait for our evaluation, which was booked solid for the next 5 months.


I tried calling our state’s Early Intervention team for a quicker evaluation, and they denied seeing her because her third birthday was less than 60 days away.  I left messages for Developmental Pediatricians, Neurologists, and Psychiatrists that would even see a child this young. I explained to the director that we were doing everything to get her help with this transition, and to be patient. But there was no room for patience. They saw my daughter as more work, a threat to their profits as a business, and wanted her out.


The director said the most unprofessional thing I have ever heard, “She needs too much individual attention.” She then went on to tell me how our daughter would never function in regular kindergarten, or in a large group setting ever because she is out of control. That we should be looking into private specialized schools for her attention needs. This is about the time I lost my shit on her because she only knew my child for six days. Six days!  I got the “this isn’t the right fit for her” speech and suggestion of not coming back. And I let her bully me out of the school without putting up a fight. I called out of work for two days while I searched for another school.


At the next school I was up front about her issues. That she needs more attention, that she has a disability and is in the early stages of getting help, that it will take some time for her to adjust to new people, a new routine, and a strange environment. I got the bullshit speech about all of their certifications, and trained staff. And again, it was bullshit. Their teachers were young and inexperienced with imperfectly behaved children. This school knew their end game in dancing around the ADA (American’s with Disabilities Act) laws. They knew to send home multiple reports from the first day, documenting every small detail. It said things like: we asked her to stop chewing on her straw several times and then she threw her lunch, she told the teacher she hated her and hurt the teacher’s feelings, she climbed the furniture, she tried to take a nap when it wasn’t nap time, or she didn’t nap and refused to sit on her nap mat [for two-hours in the dark] quietly during rest time, and she got up during lunch so we cleared her plate, then she had a tantrum because she wanted her lunch that was gone.


One of the most frustrating reoccurring incidents was when she would kick her teachers because they tried to put her shoes back on in the middle of a meltdown. She has sensory issues, I told them several times to wait until she is calm before touching her, but they refused to comply.  It goes on and on. They made sure to document my child to be a danger to herself and others, and painted my two-year-old worse than that of an active terrorist shooter in the building. This is how they get rid of our children, document them as “dangerous” to get them out. My daughter is not and was not dangerous, she just needed to be handled differently than the others, that’s called an accommodation which they refused. 


After sending home several incident reports per day, documenting everything down to her not having to pee on the potty at bathroom time, they began calling me by 10 am everyday to come and pick her up for what they called a needed “change of environment.” So then, my daughter was being rewarded for her bad behavior. We worked on their complaints at play therapy (the only type of therapy my insurance would cover at the time). We gave the school written techniques in handling her, our doctor wrote a note for an accommodation to eat when she is hungry, and her therapist even suggested sending her quiet toys or an iPad to school, that she could use during nap time so she could adhere to their quiet time rules. But they refused all of the above. They refused to handle her differently, they refused to let her eat, and refused to let her do anything during quiet time regardless of medical documentation provided. They afternoon that they expelled her was the same day I gave them the doctor’s script for extended meal times. At this point, I knew I had to seek additional help for her before re-enrolling her any place else.


Then what happened?

I researched this scenario. I joined support groups. I struggled to find solutions and I lost my fucking mind. I could have lost my job too, but my pediatrician helped me file for Federal FMLA with my employer’s insurance company for an intermittent leave of absence for a total of 12 weeks during a 12-month calendar year. This covers appointments, therapy, and needing to stay home with her or care for her as needed, even at the last minute. We finally saw a Neurologist and Psychiatrist who confirmed my suspicions of ADHD and Sensory Processing Disorder. But now what? I couldn’t be home with her forever, and I didn’t want to risk her being expelled from the last daycare in our bussing district.


I searched for nanny’s online to get us through the summer and they all wanted $15-25 per hour. I can’t pay that and I can’t quit my job. Now what? I cannot pay someone 45 hours per week at that rate, it is ridiculous. Disabilities don’t come with money trees. I started asking around to some of her previous daycare teachers and found out that one of them was out of work. I contacted her and hired her to come to my house until we could get the situation under control. This was expensive at $11 per hour when daycare only cost me $6 per hour. And having my daughter home all day was a mess, a literal mess. No more clean house while your child is at daycare. But it was only a few days per week and going to be temporary so I did it, and it was hard.


My Pediatrician suggested we have medical documentation before contacting the school district to try to get her into a preschool disabled program, so we waited until after our Neurologist visit to contact them. I saved every single incident report and document from the previous preschools and made copies for the school district. Then, about two months into this, our Developmental Pediatrician finally contacted us and was able to make an appointment sooner than the hospital evaluation. She didn’t take insurance and I had to pay $800 out of pocket, so I used my credit card and got her in. By this time, we had two meetings with the school district and their evaluations had been done, her eligibility meeting was pending.


After evaluating our daughter, she promised that nobody was going to deny her anything—not insurance, not school, no one. She wrote scripts for private Occupational Therapy and Speech Evaluations, so we could start therapy over the summer before school starts. She wrote a script for ABA therapy, and a letter recommending full-day disabled preschool in a verbal classroom setting. She also wrote a script for medication and was strongly recommending a trial of a very small dose of blood pressure medication used to treat ADHD/Autism Spectrum. If you asked me a year ago how I felt about drugging my now 3-year-old so that I could go to work, I’d have said never going to happen.


When it came time for our eligibility meeting with the school district, they surprisingly gave our daughter everything she needed: a 1:1 aid, speech, occupational therapy, and admitted her into their program. The only catch: the program is 5 days per week but is only 2.5 hours long. Of course I battled them for a full day program, but I soon learned that the only full-day preschool disabled programs are not the most ideal for a child this high-functioning. She needs an inclusive preschool classroom, which in most nearby districts, does not exist. Research has proven that children with disabilities thrive in a setting amongst their non-disabled peers as role models. So I decided to enroll her in a non-brand name nursery school within our bussing district to go after the program ends each day; so she would do half a dy disables, and half a day in a regular class. I was also able to arrange for her ABA therapy to be done at nursery school, as much as needed, which right now, is every day. Her other childcare providers did not even give me the opportunity to get her this kind of help, and it was wrong. 


She started attending the camp program at the private nursery school this summer and goes with an ABA therapist twice a week; The other three days I am still paying a babysitter for the next few weeks until school starts. She originally began going with her play therapist from Perform Care through our local Mobile Response (a program helping families in crisis in NJ). The most helpful therapy has been ABA, but unfortunately, ABA only seems to get covered by insurance with an autism diagnoses, when it also can help children with other disabilities. Most states have a mobile crisis program that can be called to help connect families with the right care available.


Six months ago, as this was happening, I regret not fighting back and advocating for my child better. Summer camps, daycare centers, and private preschools cannot exclude our children because they need extra. Our children are not a minimum wage industry, and we need to raise the bar when it comes to childcare. It takes skilled, certified, and properly trained professionals who deserve to be paid fairly. We need to start fighting back, and get legislature in place to protect our children from being excluded from mainstream programming when its clearly backed up by research that higher-functioning children with disabilities perform better with their non-disabled peers. They need RBT (Registered Behavior Technician) trained staff members who can intervene when there are behavioral issues, and they need inclusive classrooms, and flexibility. These institutions need training on being inclusive spaces for all children, because the rates of ADHD and Autism, amongst many other disabilities, are on the rise. 11% of children have ADHD, and 1 in 68 (According to the CDC in 2012) has Autism in the US, 1 in 6 has a developmental disability in general, and these numbers are rising each year. If they don’t adapt themselves to include our children, they will be out of business as their preferred clientele population continued to shrink.

The 5 stages you go through upon receiving an “A” Word diagnoses 


My post featured on Scary Mommy


I never thought this would happen to me.

When I held my baby girl for the first time and looked deep into her blue eyes, I was filled with love and dreams. I imagined her laughing, dancing at recitals, and wondered what style wedding dress she would want to wear someday. I couldn’t wait for all of the mother-daughter bonding we would share together over our lives. While I know we will probably still experience those things, I never imagined we would be here, three years later, kicked out of multiple daycare centers, isolated from “friends” and “family,” feeling completely and utterly financially and emotionally drained.
It’s been a few months since we received an autism and ADHD diagnosis. Now, as I look back on this journey, I have come up with the five stages of an “A” word diagnosis for a parent.

It started with classic denial, like any major life event. When I began to learn that my daughter was different, I kept questioning it, defending it, making excuses for it. She was tired. She was hangry. She had a long day. Then I started to defend her to myself. But she was walking at 10 months. She spoke in sentences before 2 years old. She uses big words appropriately. She makes eye contact — most of the time. How can she have autism? And ADHD? And SPD? Are they insane with all of these labels? What kind of doctor uses this many labels? They are the one with the “problem,” not me, not my child.

I convinced myself that my daughter could not have autism because she talked! Somehow all of the good memories began to negate the head banging, the meltdowns, the inattentiveness, the jumping off furniture, and her strong will. Our perception of children with conditions like ASD and ADHD are often of a rambunctious, under-disciplined child, climbing the walls due to their excessive hyperactivity, or a nonverbal child sitting on the floor rocking themselves back and forth. No, that was not my beautiful baby, who looked “normal”!

Next comes disbelief. This is different than denial. This is backed by research. This is when we tell ourselves that the environmental factors of life — whether they be food-related, allergies, vaccines, zodiac signs, weather patterns — have impacted this situation. This phase lasts a short while before we start blaming ourselves. We didn’t spend enough time on the floor playing together and doing flashcards; instead, we gave them too much screen time. The television gave my child autism. Can you believe that? It’s a conspiracy!
We find the most obscure yet seemingly fundamental reasons to convince ourselves that this is not our truth. Our “friends” and “family” fuel our fire and remind us that all children have tantrums. All children have bad days. But we forget that not all children have tantrums and bad days almost every day.

Others said things like, they just need more discipline. They need to play sports. Trampolines will cure their hyperactivity. You should take a parenting class. Maybe an organic gluten-free, hormone-free, dairy-free, dye-free diet will undo the damage, and we put ourselves through hell hoping to undo the diagnoses with kale smoothies infused with super fruits and DHA (I can safely say, I tried everything).
Whatever the reasons are, we have moved from denial to disbelief that this is real for our kid. We research how we can undo it and prove it to be some conspiracy related to a non-organic banana slice our kid ate at 3 months old.

Once we run out of reasons that these diagnoses must be false, we begin dissecting. We dissect our children’s symptoms and behaviors to find other possible diagnoses. Because we have the internet, we can play doctor too! Well, first, she is a girl and all these people are saying only boys get these conditions, so maybe she is just a spirited child? Maybe she has some other curable illness that gets confused for autism?

You go over your doctor visits in your mind and question the results. Well, the doctor said that she makes inconsistent eye contact while asking for assistance. Okay, but she still makes eye contact. I don’t make eye contact with everyone all the time. Actually, as an adult, I avoid eye contact with lots of people on purpose — like people at the mall who try to sell me Dead Sea lotions. Do you know how much money I save not making eye contact with those people? That makes me smart! She is just like her momma! She is doing it on purpose!

The doctor explained to me that during a balloon test, our child failed to look at the adult who had the balloon and only followed the balloon. Still, I thought, it couldn’t possibly mean autism. Since when did keeping your eye on the prize become a bad thing? This has to be something else because she does not meet the criteria for this. She talks! She can’t have it. She sleeps! ADHD kids never sleep! Her ADHD brother never slept! How can they have the same thing if they didn’t have the same symptoms? This dissecting stage can go on for a while, until you have run out of things to research and conspiracies to fact-check.
After you deny, try not to believe it, and dissect it, you realize that your child does have a disorder and you begin to accept it. When a character performer who came to our child’s birthday party told us how “annoying” she was and after a few daycare expulsions, we began to see that if we were to fight every person who ever complained about our kid, we would be fighting a lot of people.

So now you are at acceptance and you begin to advocate for your child by getting them evaluated by other specialists, getting them therapy, getting an IEP, a 504 plan, and sometimes medicating them. You basically begin spending a lot of time and money on everything you can find that may help your child. This includes filing FMLA; taking them to endless hours of occupational, behavior, speech, and play therapy; drinking a lot of wine; and researching why medical marijuana isn’t legal for children after reviewing the millions of side effects of proposed medications.
You begin to support your child and look at them with as an individual with needs other than the ones you had in mind. You thought they needed to clean their room and be good at sports, but instead, they need help calming down, help transitioning throughout the day, or time for you to help them stay focused. They may also need you to understand why they can’t succeed at a sport or keep their room tidy.
Sometimes they need a break. Sometimes you need a break. Either way, you learn to bridge this gap between the kid you expected to have and the kid you actually have. This leads to the fifth stage, loneliness. This is when you realize that all you talk about is the research you have done, the therapies you are scheduling, and the progress your child is making, to the point that nobody wants to hear about it anymore.

This also goes hand in hand with your “friends” and “family” who begin to avoid you. Yes, those people you once drank wine with while your children played together no longer invite you over or to activities anymore. Sometimes they will shoot a text and some even like to make adult-only plans to save face with you, but what they are really saying is that your kid is no longer wanted around their kid. Maybe they think these conditions are transmittable through friendship and laughter. So the loneliness begins. Your family struggles to make friends who understand, friends who don’t judge your parenting, and who have kids who understand your kids.

Sadly, for many of us, family members will even tell you that this is not real. That you are an asshole for letting anyone label your child the “A” word. You are classifying them, labeling them, setting them up to fail before preschool! You begin to cut people out of your life whose reactions to your situation are toxic to you, your child, your family, and this road gets lonely. But don’t worry, social media is here to save the day! You then find support groups on Facebook where you can connect with other special needs parents, and it brings you back to life a little, just enough to get through a day without that third round of tears.

Dealing with a diagnosis for your child is hard, it is painful, and it may force you to lose all hope and faith in society. The way people treat you, your child, and the cruel comments both friends and strangers make is possibly the worst part of this parenting journey. If you don’t parent a special needs child, please keep in mind that we have gone through the emotional stages of accepting our children’s diagnoses, and all we want is to raise kind people. What you can do is support us, be kind to our children, and do your best to teach your children about acceptance and inclusion. That is what makes all the difference.

What do you do when your Pre-teen gets bullied?

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I don’t know. But this is what I did, and I followed my heart.

I remember the first time I realized my child was different. I also remember the first time he realized he was different too. It was when he told me that he is a fat loser that rides the short bus to school. He continued to call himself stupid and worthless before I interrupted him.

“Who said this to you,” I asked?

“The kids at the after school program,” he replied.


“Like every day that I go there,” he told me.

He is eleven years old. Eleven! Sometimes it feels like he is older because of his size, and how intellectually advanced he is, but he is only eleven, and he is telling me that he is worthless. And I can tell that a part of him believes it too. I was so infuriated, so outraged. I wanted to find the little shits that said this to him and stun gun them until they peed their pants to teach them a lesson. But that would make me a bully too. This was one of those moments where I felt tested as a parent, to this child that I didn’t give birth to, but is still part mine. I remembered him at three years old, and his adorable mispronounced words. His entire life had started to flash before my eyes and I knew I had to do something meaningful in this moment. So much advice nowadays tells us to share our own experiences with our children to help them through the awkward years.

I pondered for a few minutes. I thought about bullies and who they are, what happens to them, and what I could say to prove to him that he is not worthless. Flashes of sadness hit me as I remembered kids I had known either personally or by association, who killed themselves as kids over this and other trivial matters of adolescence. Kids my stepson’s age are actually killing themselves because they feel worthless. He is already on medication for his ADHD that clearly says it increases a child’s risk of suicide and death, so my panic to this situation felt intense.  I had to think long and hard about my dreaded childhood years, to my dark past that I didn’t want to relive to find a piece that could help him.

“Do you think I’m a loser?” I asked him.

“No, not at all.” He said.

“But if you thought I was a loser, should I take your word for it?”

“No.” He said.

“Why not?” I asked.

“Because I’m just a kid.” He responded.

I told him about my goth phase that lasted from middle school through high school (and I guess I can admit now that I still listen to Type O Negative alone in my car). I told him the awful things people said about me, and to my face. And the story how a girl I didn’t even know threw me through a glass trophy case in 8th grade over a rumor. I shared the phases of having no friends, eating lunch in the bathroom, and my battles with feeling worthless. He looked pretty sad for me. He also looked surprised as if he didn’t believe me. He gave me a hug, and that made me smile, knowing what a good person he is growing to be.

But then I also told him how it doesn’t matter what anyone said. While these years seem like the most important part of your life, they aren’t. I told him about this girl that always picked on me. We can call her Lisa. She picked on my hair, my teeth, my eyebrows, everything you could think of. Every day she drove me crazy when I was around his age, before high school.  I told him how I saw Lisa recently at the grocery store. I saw how interested he was to hear what happened to her. So I told him, she was the cashier that rung up my groceries. She is 33 and is a cashier at Shoprite. She is also a recovering drug addict who is missing about 4 teeth.

“So she’s a loser,” he asked?

“That’s not the point. The point is how much should I have valued her opinion about me? When have I ever mentioned her before today?”

“Never,” he said.


He asked me if all of these kids were going to end up like her. I told him no. While some bullies will probably grow up to be fat, stupid, losers themselves, some are successful and will make terrible managers someday who hopefully get fired for discrimination or creating a hostile work environment, but some will hopefully grow up to be better people because we all make mistakes. Regardless, there are a lot of bullies in this world, and they will test us. They will try to knock us down. But you need to remember that how you feel about yourself is more important than what anyone else has to say. I told him how my own parents said I couldn’t graduate college in three years and laughed, but I did it. I only did it because I believed I could do it when nobody else did.

I also went on to list the things I love about him: his beach scene paintings, how cultured he is in the arts and history, how kind he is, how funny he is, and how awesome he is. I told him that I wasn’t like the other kids either. I told him it will be hard and that he is such an amazing person that it would be a tragedy if he wanted to be mean like a bully. I told him to keep being a good person, and the right friends will come along someday.

The last thing I told him was never to throw the first punch, not ever, but to stand up for himself when someone else does because he is worth defending. He is worth everything. 


No toddler will eat this shit, because I won’t even eat it! 

I was googling meals to feed my picky “34-month-old” or “almost-3-year-old.” This article came up. This food sounds disgusting. I just want my daughter to eat something other than chicken nuggets, pizza, bottomless cheese sticks and pierogies. I may just resort to protein shakes.

When did my 2 1/2 year old become an iPad pro?



It was when I got one of those “reports” from my daughter’s preschool that rambled on about how she lost her shit when they introduced the kids to desktop computers, that I realized this generation is too tech-savvy. She poked at the screen and yelled at the mouse, she just couldn’t understand the concept of no touch screen. Sometimes I question whether Apple makes their products too user friendly, or if any other device is just too primitive. I never showed my kid how to use the iPad, she just figured it out all on her own.


Before we knew what it was like to bring a toddler to a restaurant, we said, our kids won’t be getting any screen time. I laugh when childless people say that now. I laugh so hard.


We soon learned, a device like our iPad, or our iPhone, and even in a very urgent situation we can sometimes get away with using our Samsung s5, these devices are our savior -for when we need to shower, cook, clean, enjoy a meal somewhere, and even keep a child in their bed at night when you need a moment of peace.
My daughter’s latest joy is that Disney movie Enchanted -the one with Amy Adams and pre-Elsa Indina Menzel. Last night, I tucked her into her bed with the iPad. I put on Enchanted for her on the Starz app and walked out of the room to go and clean up dinner.
I check on her about twenty minutes later to find her commenting nonsensical, “yxbfhsi” type language on YouTube videos on my account where it appears she has watched, liked, and subscribed to more than 13 Little Baby Bum nursery rhyme videos. She also watched that fucking “Daddy finger” song in three languages, with at least twenty-four different themes from ice cream cones to witches and reindeer singing it.

I scrolled through my YouTube account to find that she has rated and commented on tons of videos.

I asked her, “What happened to Enchanted?”

She answered, “Here it is, momma.” This is when she switched back to the Starz app and put it back on without my help.
In less than thirty minutes, she killed 70% of the battery and multi-tasked between several learning apps-one is now in Chinese, two puzzles, YouTube, my Facebook account, and skipped through three different episodes of Goldie and Bear on the Netflix app.

And my Netflix account now has subtitles and closed captioning. I don’t even know how to fix this!
When did this happen?