About 20 years ago, toward the end of my daily phone call to the NY Dept. of Education, the irate administrator on the other end of the line shouted at me “You can’t keep calling here every day! You are just like a mosquito!!!”.
I must admit – I was absolutely thrilled to receive such a “compliment” from them. It meant I was shaking up the system.
At the time, it was the month of December. The state had suddenly decided to put a freeze on all new school placements until the following year. We had found the perfect school, but the state had refused to approve the placement. The school director was doing everything in her power to help us obtain authorization, to no avail.
This reality was completely unacceptable to me. There was no way I was going to let my son stay at home for nine months without treatment because of a sudden budgetary freeze.
Advocating for my son became a necessity
I realized that I had no other option but to advocate for my child, even if it meant fighting the entire system. I began by calling the department of education to protest. They were not particularly receptive or interested in solving the problem, so I decided to call them again the next day.
Once again, my pleas were met with rigid, premeditated answers. I began to feel frustrated and angry, so I decided to call them back again the following day- and to demand to speak with supervisors. The team there was beginning to get annoyed with me but I refused to hang up until I spoke to a person in charge.
The supervisor wasn’t much more responsive than the rest of the staff I had spoken to, so I tried again the next day, hoping to speak to a different supervisor. This went on, day after day, for about a month. Eventually, the supervisors became so annoyed with me that they began to pass my calls along to the policymakers. It seemed like things were beginning to progress. – but not enough. Nobody offered me an educational placement for our son.
Fighting the system became my full-time job
At the time, I had just relocated from Israel to the U.S. and had been seeking employment. However, when I realized I would be unable to work because my son was stuck at home, I dedicated my days to fighting the system. I spent hours a day on the phone and buzzed in the relevant people’s ears incessantly.
They did not enjoy this irritation and did their best to slap me away by slamming the phone down on me and telling me to go away. This only aggravated me further and increased my motivation to continue advocating for my son.
There are times when advocating for your child requires making a fuss
After about a month of making phone call calls, I realized I needed to change my plan of action. I decided to take my three-year-old son to the district offices for a visit. At the time, he was extremely hyperactive, curious, nonverbal, and completely unresponsive to requests or demands. I sat down, uninvited, in the waiting area…and let him roam the office freely. I decided to intervene only if there were safety issues at hand.
My son was more than excited to explore the offices, join in on meetings, and attempt to format the computers (he was quite experienced at that!). He enjoyed climbing on the posh couches, which I thought were also the perfect location for changing his diapers.
As you can imagine, within a short time we had completely disrupted everyone’s day. The supervisor asked me to leave, but I gently reminded her that we had no place to go because my son didn’t have a school placement. I, therefore, thought would be it best for the professionals responsible for his education to educate him in their offices.
I then calmly assured her that we would be sticking around for as long as it took for them to find a suitable school placement for him.
Perhaps some of you might be thinking I had taken extreme measures to reach my goal. You are right. But I had been left with no other option, as it had become very clear that the policymakers did not see my son as an actual human being – they saw him as a line in their budget. Our presence in their offices forced them to realize that he was a child in need of an immediate and appropriate educational setting.
Persistence paid off
Needless to say, within a short time, the district somehow managed to convince the state to authorize my son’s placement. Persistence had paid off and we had won the battle.
Our celebration was short-lived
I would love to tell you that our trials and tribulations ended after this rocky start, but, unfortunately, this was not the case. It didn’t take long for us to realize that we were just beginning our journey. Advocating for our son, and for all of our neurodivergent children has been an uphill battle all the way.
I imagine if you are a parent of a neurodivergent or disabled child, our story sounds all too familiar. I’m sorry to say that not much has changed or improved over the past twenty years. It has been- and still is- an exhausting and frustrating journey.
I am unable to recall the number of times I have said to professionals: “My child is not problematic! He has challenges- and he is amazing! The system is problematic because there is a lack of services, and in many cases, it was designed to protect and serve itself- while working against the families it is supposed to provide care for”!
A few questions for policymakers and professionals
Over the years, I have come to realize that there are many times when policymakers become extremely distanced from the people they are meant to assist.
I truly believe that most educators and policymakers began their journey with the best of intentions. However, as they worked their way up the administrative ladder they became so bogged down with the demands of the system and the allocation of budgets they forgot the most important thing- they are responsible for the welfare of actual people- with needs, challenges, and feelings.
I have found that many administrators and policymakers have unfortunately learned to consider the needs of the system and the budget before those of the children and their families.
In light of this, I would like to ask professionals and policymakers to consider a few simple, yet difficult questions before making policy or budgetary decisions that impact the people you serve:
I hope the answers to these questions will encourage you to begin to re-evaluate the educational system, which is in dire need of significant change to become more child-oriented, effective, relevant, and inclusive.
I would like to offer an important insight to fellow parents of neurodivergent and/or disabled children. Over the years, I have discovered that being called a “mosquito” by administrators and policymakers is like earning a badge of honor. I truly hope that, as parents, you will never find yourself in a situation where you will need to earn such a badge. But if you do, I pray you will always have the strength and determination to evolve into the feisty MOSQUITOES you will need to be!
And remember, if you begin to feel frustrated and drained, keep in mind that mosquitoes never, ever give up until they reach their goal and are satisfied with the outcome!
I urge you to do your best to seek out support from other parents because it’s really difficult to advocate for your child on your own. The more parents support each other, the easier the journey becomes!
And hopefully, in the end, if enough of us “mosquitoes” advocate for our children, we will inspire policymakers and educators to create the type of educational system our children truly need and deserve.
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Moving Forward is a journey between the worlds of autism, neurodiversity, brain surgery recovery, and faith. It provides a rare glimpse into how sensory and neurological processing affect functioning and thought, through the eyes of a professional, parent, and woman who has experienced them firsthand.