An open letter to parents and the general public

15-04-2023

An open letter to parents of infants and toddlers struggling with developmental disorders and to the public in general.

To the parents, I applaud your courage, tenacity, and undying love for your children who are struggling with developmental disorders or just being kids.

For people in general, get over yourself and show some empathy to those who are struggling.

Breastfeeding bell and mommy

Early this morning I went to the lab for a blood test. I didn’t have an appointment. So I knew my wait wouldn’t be short. Just when I correctly assumed there were a bunch of people sitting in the waiting room. Some with appointments and some without. I came prepared with my headphones and a good audio book on my kindle. As I settled in to wait, I immediately noticed a young mother with a small child. She still couldn’t be a year old. I noticed them because the child was active and was learning to walk and he was in everything as in my opinion it should be. She was exhibiting curious behavior. I saw the mother peek around her as the little boy began to remove the magazines from the table to the floor and she reached over and guided him firmly but carefully back to her seat. She firmly said: “No!” He must not make a mess.

With nothing else to do with his curious and active little mind, of course, the child begins to cry and then began to tug at the mother’s blouse. Having been there myself and having friends with children, I immediately knew what was happening. The child was breastfed and now wanted to be fed by mom. Mommy had come prepared with a blanket. But I figured with so many strange eyes looking at her and hers her child, I’d rather not have to feed her baby right now. She started trying to distract him by playing hide and seek with the blanket. This distracted him for a good two minutes and then he started tugging at her shirt more aggressively and whimpering even louder. Of course, in the small room all eyes were on the mother. She was doing her best to calm him down by rubbing his head. Before giving in she even tried to distract him with a game on the phone. This only lasted for about a minute before he got really frustrated and started whining even louder trying to get out of his lap and get what he wanted. Mom’s milk! I saw mom look around her again trying to comfort her son. I smiled hoping to reassure her that she’s okay because he’s a boy. Some of the other glances around the room weren’t so friendly. They seemed annoyed by the boy’s whining. They look upset when the boy threw all the magazines on the floor. They look upset as the boy plays with the door lock. They seemed upset that the child was doing what children do. They just seemed annoyed.

The mother finally relented and covered herself with the blanket and allowed the baby to feed. After the happy little camper was fed, he was perfectly content to watch the movie on his mother’s cell phone. Soon after, the mother was called in for processing.

Love Tokens, aka Developmental Disorders

Halfway through this observation, another boy of about 10 years of age entered the laboratory with a parent/grandparent and two caregivers. I have to describe the child so that you can have a complete idea. He was 10 years old. How do I know this? The caretaker asked the parent or grandparent for his date of birth while he was being registered.

He had a helmet on his head and some sort of harness around his body on a short leash so his keepers could follow him. Immediately, it became clear that the child had one or several developmental disorders. He was constantly moving involuntarily and making clucking and ticking noises with his tongue that, for lack of a better word, were unsettling if you hadn’t seen them before. In my non-expert opinion, he exhibited Tourette’s Syndrome sighs and ADHD and perhaps autism on some level. I have researched all of these disorders so it certainly seems plausible. Ah, I forgot that he also had a cast on his arms. So it was clear that he was a bit dangerous himself; that is, the helmet. Again, from my non-expert opinion, the helmet was used to prevent him from harmonizing through sudden involuntary movements and the harness was to help his keepers follow him.

The older gentlemen with him were remarkably calm. He wanted to tell him how much he admired him, but he didn’t want to be offensive in any way. You never know how people feel about these things. Some want to talk about his struggles and some don’t. I say father or grandfather because he was an older gentleman and appeared to be in his 60s and the boy, as mentioned, was 10 years old. He had two caretakers with him. He knew they were caregivers because they wore his caregiver outfit and helped monitor and care for the child.

Initially, while making clucks and excitable noises with the mouth and moving from side to side, the child was sitting on the parent’s/grandparent’s lap. Just like any parent with his child, the father/grandfather was so loving and caring to this child. I would kiss him on the cheek in the gaps left by the helmet and when the kid would get really excited (this happened every time someone moved to go back or walk in the door, so every few minutes he would jump up and down and make these clucks ), the father/grandfather would gently kiss him on the cheek and try to shut him up and calm him down. Finally, one of the caretakers asked the older gentlemen if he wanted to be taken outside. To be fair, I was making a lot of noise and I can see how people would look weird and annoyed if they weren’t used to it. But my heart went out to the father/grandfather and this little boy. She couldn’t help what was happening to his body.

For the record, I don’t think any of the strangers sitting in that room meant any real harm. Nobody said anything but if looks could kill. His faces said it all. Some muttered and looked away. Some simply stared at the small family. The older gentlemen were sitting across from the men so it never stood out to me, but I could tell it felt a certain way. He made a loud comment to no one in particular that the little guy had a lot of energy and he was like that all day every day. He laughed a little. He reminded me of the old saying that sometimes you laugh to stop crying. I figured the older gentleman was used to the stars, so he never looked up. He constantly played with the little boy and when they took him outside, he would take his phone to attend to it. In making that statement he told me that he knew a lot of people were uncomfortable and that this was not his first rodeo.

The little boy and his caretakers came out and the older gentlemen stayed inside waiting to be called. I watched the boy and his caregivers from the window while listening to my audiobook. The little boy couldn’t stop his constant clucking and involuntary movements. I realized that he was a handful. He sat between the two caretakers. At one point, the keepers were not holding him down, as he had been trying to wriggle away from them ever since they sat down. Since they weren’t holding him down, he bolted and ran, grabbing them both to corner him, slipping past the woman, but the male caretaker was able to grab him before he ran out into the street. All this happened in a few seconds. I could see why he was wearing a harness. I could see the danger that he could unknowingly bring to himself. Once he was reseated, I watched the male caregiver wrap the boy’s legs around his to hold him down and the other caregiver hold on to his harness.

If someone who had just approached had seen this interaction between them, they might have been alarmed and wondered why the child was being held. Of course, the child was not distressed. They were playing with him trying to keep him distracted. But he was physically restricted.

The older gentleman on his phone would look up from time to time to see what was going on. Fortunately, he hadn’t seen the boy run out of his caretaker’s hands, however, he saw him physically immobilized, but he didn’t say anything. I thought to myself, I’m sure this is normal.

Finally, they called me to have my blood drawn. While I was being processed, I overheard staff members talking about the child. I heard one say that, I can tell that it must be xxxxx in the waiting room. They could tell by his distinctive tics and the sounds he was making. The other commented that she was there last week, she wondered why he had come back so soon. She hoped he was okay. I asked the nurse who attended me if they had trouble drawing blood from the child when she came in. She said it’s definitely an office effort. The father and caregivers had to restrain him the entire time. She didn’t know what disorder he had, she thought it might be some kind of autism, because he didn’t talk, he just made the excitable clucks.

When I came out the boy was back in the waiting room and he was making his noises and making the involuntary movements of his mess while sitting on the older gentlemen’s lap and the older gentlemen were still patting him and kissing him on the cheek and they were trying to keep him calm in this strange environment with strange people looking at him, some with curiosity and others with obvious annoyance.

I am writing this open letter to remind you of the struggles parents go through when they find themselves in uncontrollable situations. You don’t want your children to struggle with developmental disorders or otherwise. But you take the cards you’re dealt and love and cherish every minute you have with the gifts you’ve been given. I am thankful that there are loving parents who overcome the struggles they have every day. I know someone else who is also grateful. Their children!

The next time you see a struggling parent, whether your child has a developmental disorder or is just a child, I encourage you to offer an encouraging smile or in some way convey that you understand. That smile goes a long way in removing the feeling of dread and anxiety that you are already dealing with when going out into a public place. Let’s not make it difficult. Let’s make it easier. I really wanted to make an impassioned speech to the people in that waiting room. I wanted to stand up and give a speech about empathy and compassion. In all transparency, they were all senior citizens and apparently far removed from their parenting days or grandparents. My impassioned plea would have been to ask every person in that room to put themselves in the shoes of that young mother or that older gentleman. How would you like to be treated? When you looked up from caring for a child with uncontrollable movements and loud clucks, what faces and expressions would you like to greet you with?

What if you were that young mother trying to calm down an active baby? Would you like to have to worry about the people around you and how they feel while you are feeding your baby? Many times we cannot have compassion for others until we find ourselves in similar situations. I hope you never have to deal with a similar situation, but if you do, I hope you find the courage it takes and face the challenge with grace like the parents I saw today did.

Finally, why did I call developmental disorders tokens of love? I think developmentally disabled children teach us something about love. That little boy, though he could never say that he had an undying love for his caretakers and his senior knights. He was completely under his care and he believed that they would do what was best for him. Even as they held him down, I didn’t see sadness on his face. He was at peace in the little world of his. The caretaker for him, in turn, showed such beautiful love and care for him. The older gentlemen caressing him gently and kissing his cheek. I am willing for him to teach everyone he comes in contact with something about love. He certainly touched my heart. Enough to write this open letter of almost four pages. That’s something special right there.

As I leave you, keep in mind that an encouraging smile cannot be too much to ask for someone to feel better about their situation. What can you do today to make someone’s load a little lighter? Think about it?

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