My mom is part of the baby boomer generation. When she and graduated high school it was expected that women would get married and/or go to work. My mom wanted to be a nurse. Her guidance counselor in high school advised her that she was not “college material.” At 18 years of age she went to work for NY Telephone in Brooklyn. Like so many other women back in the day.

My mom and dad met and married fairly young as most couples did. After they were married Mom went to school and earned her beautician’s license. She still has it. “Of course I kept it, I worked hard for that license.” Three kids later she never gave up her original goal; to become a nurse. My sister was 2 years old, I was 4 and my brother 7 when mom enrolled in “Richmond Community College” while working full time at JC Penney. She had the support of my dad and my grandparents. My dad learned how to fix my sister an my hair, take us for pictures; cook. When I was about 6-7yrs old I refused to eat hot dogs. Yet I would eat baloney no problem. I remember my dad fixing us hotdogs for dinner and I was like, no I don’t eat hot dogs. My dad asks, so what do you want? A baloney sandwich I answered. But they’re the same thing!! My exasperated father yelled back. Ummm no they weren’t bahaha! So my dad went to the deli and bought me baloney.

My grandmother was home, she didn’t work; grandpa went to work. Even with the help and support of my dad and her parents I know it wasn’t easy on my mom. All classes were in person. A few times my sister and I were brought to class. I remember being so excited to be there!

There was a period of time my sister and I spent Monday to Friday at our grandparents house and went home on weekends so mom could attend school very early during the week. We were still in walking distance of our school. It was definitely different spending that much time with grandma and grandpa. It wasn’t bad, not in the least. We were very close with our grandparents. In the mornings we all had breakfast together, grandpa still worked. We would walk to school and come back to their house after school; do homework. There were times grandma couldn’t help us with our math homework. She knew how to do the math, we were just taught different. She would do the problem her way. And we would get the same answer. Don’t ask me what the difference was.

Off topic but I personally had the same issue when my girls attended school and learned “new math”. The stupid powers that be even offered classes for parents to learn “new math”. I flat out refused and would call their teachers telling them my girls would do math however way they figured it out. Problem solved haha.

It is 1980… mom graduates with her Associates degree in nursing! It paid off!! Her first job was in the Neonatal intensive care unit (NICU). Tiny, tiny babies! And she didn’t stop there. My mom went on to earn her Bachelor’s degree in Nursing and soon after that her Master’s degree in Nursing education. She accomplished her degrees all while working full time with 3 kids and a husband. When mom was going for her masters degree, we were much older. However all classes at the time were in person so she attended evening and night classes. After Mom earned her Masters we thought she was “done.” Nope. On to Nurse Practitioner!

I’m so, so proud of her. Not everyone ignores negative advice given to you as a young person. My mom stayed true to her calling and persevered and worked hard to earn her degrees and many certifications. I get a kick out of her professional signature with every degree and certification trailing after her name. She accomplished what she wasn’t supposed to accomplish. Well done!

When Thomas went to live at his group home I thought my days of micro managing his care would lessen. Backing up a few years: When he lived at the residential school from 16 until turning 21 the psychiatrists, staff and nurses caring for him were amazing. Communication was never an issue, I was consulted with and knew everything to know about the care of my son.

Thomas went from residential school to his group home. I was reminded by the nurse who worked there at that time, that one of his meds had a side effect of kidney damage. I was aware of this side effect and agreed to discontinue the medication. Thomas handled the change well. I was assured by this nurse that I trusted, that this psychiatrist was “one of the good ones.” Of course I sighed with relief. I trusted the nurse’s judgement. I had stopped trusting psychiatrists where I live 24 years ago and only used those in Manhattan.

As special needs parents there are little to no instructions and/or guidance to raising this kid. As a nurse, I educated myself about Thomas’ meds. I did not become crazy about side effects and I knew those meds like the back of my hand. I could give a lecture on the actions, side effects, blood draws, etc…

During a conversation with the new group home nurse who took over from the first one; I was informed that this “good” psychiatrist had been tapering my son off medication that controls aggressive behavior. Medication that he cannot be without.

My girls picked up on the change in Thomas before Tommy and I did. They said he was angry, not happy to see them like he used to. No jokes with them. I was livid that those meds were touched. This was done without written and/or verbal consent of Tommy and I. Thomas’ legal guardians. I called the psych right away. The conversation was odd. I right away told her what she did was wrong, there was no consent…and she recommended we work with another doctor. Wow. Wow. It must be really nice to fuck up, not offer an apology and then pass my son off to someone else.

I emailed and spoke with the heads of the clinic. Multiple times. I did not yell, I did not curse. I intensely, clearly and angrily pointed out that Thomas has legal guardians who are also his parents. There was no written permission to make such an asinine med change. No discussion. Instead of asking the parents the effects on Thomas of a lowered medication dose, she asked the group home staff who said he was “fine.” My son was not fine. No one knows my kid like I do. Was my opinion or expertise requested? No. Was my permission given? No. Was I insanely angry? Yes.

We were assigned to another psych practitioner within the clinic who listened to me and corrected his meds. The correction did not occur overnight. In the meantime we saw behavior from Thomas that we had not experienced in years. Reminding Tommy and I of a time in our life we never thought we would have to relive. Horrible, scary and completely unnecessary.

I put this experience in writing to the appropriate complaint board. I sent the letter certified/return receipt. I know what to do, this is not my first letter writing experience. I’ve taken Thomas out of that psych clinic. I’ve changed his primary physician. In all the years I’ve taken Thomas to specialists, neurologists, psychiatrists, primary physicians; those doctors were of my choice. If they took our insurance, great. If not we found a way to make it work. If they provided poor care we left.

My son has never been treated as if he were someone without a family, someone who has no one overseeing his care. I’m not angry with the group home agency or staff. They are not the ones with the medical license. This post is not in any way a warning about admitting a loved one to a living situation outside your own home such as a group home setting. We have no regrets in our decision.

What I do regret is not personally choosing his psychiatrist. Lesson learned. Thomas is currently under the care of a respected psychiatrist in Manhattan of my choice. She does not take insurance. Meh, not the end of the world. His meds are stable and he’s doing much better. There is room for improvement and more specialists to consult with. I am the person who chooses the specialist and I am who the reports go to.

Micro managing continues.