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.