Realizing That "Boundaries" Are Not the Answer for My Special Needs Child – Kveller
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Special Needs

Realizing That “Boundaries” Are Not the Answer for My Special Needs Child

When I adopted my son, I saw a shy little boy who looked neglected. He had pale blond hair and pale blue eyes, and was tiny. He also had a mouth full of graying teeth. I was shocked, but assumed it was a sign of the poverty of the orphanage that he was living in since birth. Little did I know that it was an early sign of many health hurdles we would have to face together.

I received my son a few days before his 3rd birthday. Mistakenly, I brought clothes for a 3-4 year-old to the orphanage. They were huge on him, the shorts falling off. In my suitcase, I had included some boys’ clothing that had been given to me for the wrong age–18-24 months. I had intended to donate the clothes to the orphanage. Instead I dressed my son in them, and they fit.

My son came home with me and started to fall all the time. He fell off the sofa. He fell in the hallway. He fell walking down the street. He fell in the supermarket. He fell in the playground. He fell every day. Sometimes I saw him fall–tripping over nothing. I couldn’t understand it. I switched shoes–maybe they were a bad fit? I took him to physiotherapy.

The physiotherapist noticed how small he was. I was recommended to take him to an endocrinologist. The endocrinologist said that he was smaller than 99% of children his age, even for children a year younger than him, and recommended going to a bone specialist and neurologist to rule out other factors, given that my son was also falling all the time. The endocrinologist also sent him to do hormone release tests.

The bone specialist sent me to do genetic testing and blood tests. The neurologist sent my son to do a brain MRI. Genetic and blood tests confirmed that my son had hypophosphatemic rickets. The brain MRI and hormone tests confirmed that he was on the septo-optic dysplasia spectrum and had limited hormone creation. The brain MRI also showed Chiari brain malformation.

The neurologist sent me to a neurosurgeon and a neuro-ophthalmologist. More tests. And more tests. Hormone treatment shots every night. Medications 6 times a day.

The neurologist said that my son had language developmental delays. He had attention deficit disorder. He had memory problems.

My son is in special ed. He is nearly 9 years old and still doesn’t know all the letters in the alphabet. He confuses several letters, and some letters leave him stumped altogether. When his teacher asks him to read, he guesses words. She has complained about it, and about his impulsiveness.

For a long time, I assumed that the teachers who told me that he had delays were the experts. When they pushed him to forge on despite not remembering letters, I accepted what they said. When they told me not to study with him at home because it made him upset, I accepted their verdict.

When his teacher recently asked me to read with my son every day, to say the words and have him repeat them back, I accepted it.

And then I realized how ridiculous it was, and how little it helped him. I sounded out words with him, painstakingly. And that is how I discovered that he still does not know all the letters. I don’t know how a teacher can expect a child to read words if he doesn’t even know all the letters. I also don’t know why I expected teachers to be such experts that I gave up my own powers of analysis and let them make all the decisions.

My son has been in crisis mode for a few weeks. He refused to go to school. He was too tired to get up in the morning. He didn’t want to dress. He hid and threw out his medicine. He didn’t want to get on the mini-bus that transports him to school.

He didn’t want me to take him to school, because then he would miss me. When I took him to school, he found it unbearable to face my departure, and held on to me with all his might. Recently, a secretary and guard restrained him so he would not run out of the school.

And you know what? I was in crisis too. I talked at him and talked at him, because that’s what I thought I “should” do. I thought if I stood tough, he would push himself to go to school. I thought discipline is the answer. People in my family, well-meaning counselors, a clinical social worker I know, all pushed me to “set boundaries” and to “set limits.”

It sounded right, but it turns out it was all wrong.

I realized it slowly. I talked and talked and then after all the angry babble, I calmed down and realized how awful I was making things for my son. And it wasn’t right. I asked him what I could do to make it easier for him–easier to take medicine for example. He said to say please. To ask nicely. I did. He took his medicine.

I realized that he needed my support. It was that simple. When he woke up late in the morning, I had been panicking, pushing him to hurry up, yelling at him when he got distracted.

I realized that when I overwhelmed him with my own frustration, he shut down and couldn’t cope with going to school. But when I woke up earlier and tickled him, sang to him, used inspiration and played a bit of Frisbee, he was fine. He dressed. He took his medication. He got on the mini-bus. He went to school. At the end of the day, he told me he “had fun.”

And I realized–the idea of “discipline” and “boundaries” are fine. But my kid shuts down when I push him too hard. He can’t cope. And when I allow myself to get overwhelmed by negative emotions–it’s just too much for him.

OK, it’s hard. It’s not easy to refocus and make myself keep it light. But I’ve realized it is the answer, contrary to what everyone says. I know that if my family members, my social worker aunt, or my cousins, saw and heard my morning routine, they would be shocked at the laxness, the coaxing, the light tone. They would think I am “giving in” and letting my child dictate what happens in my home. You know what? He’s not their child.

I realized I can’t use the popular script for how to run a household, because it doesn’t work in my house. And there are probably a lot of households like mine, where people find they can’t use methods that are fine for others, methods that are popular—because they just don’t work for the actual, real live kids that we live with, with all their complications.

Sometimes I get the sense that I will be blamed by my family basically for the rest of my life for anything that goes wrong–because I’m not following the script. But you know what? My kid is going to school. And next week I will talk to the teacher to get him tested for dyslexia. I can’t expect his teachers to advocate for him, I see now. That’s my job.

Recently I read a lovely article about the importance of connecting every morning as you start the day with your child by snuggling, telling a joke, having a morning ritual. Yes! I thought. That’s it in a nutshell. That’s the answer for my son.

Some kids find the gauntlet of the day really daunting, especially when they face it alone. But if you start the day by giving them positive feelings, a sense that they are loved, it gives them the strength to face what the world will bring, and take it on.

It works for us.

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