It’s not often that I tell my story of my life being Thomas’ mom. Tommy and I were 26 years old when he was born on his due date. I used to be a fairly quiet person. Speaking up was not a big part of my personality. Sarcasm yes. I became more outspoken because of my son. In a short time, I began raising my voice and/or yelled at multiple specialists on behalf of myself and Thomas due to lack of professional behavior. Many medical specialists we were referred to 24 years ago were horrific and useless and are still in practice. I would love to know how they kept their licenses over the years. They practice where I live.

Our pediatrician was here. When we were first referred to her when Thomas was a baby she was very understanding and helpful. After a few years she became a horror show. Aside from Thomas being speech impaired she didn’t believe me about his behavior, that he had half hour tantrums, threw things, hit me, you name it. I requested a referral to a child psychiatrist but she told me, “I don’t know any.” Uh huh. I found a center of child therapists and psychiatrists here, but the med trials made me feel as though they didn’t know what they were doing. Turns out they didn’t. Big surprise.

I went online (our first computer when Thomas was almost 6) and found a psychiatrist who treated children on the upper west side. I was impressed with his credentials and experience. I never drove in Manhattan before and the doctor didn’t take insurance. Neither fazed me at this point. I made the appointment and grew a set to ensure I would be ok driving in the city for the first time; alone no less. I adored this man. He listened to me. He believed me. It felt surreal to have someone listen and believe. For real. There were 3 required appointments. The first was me alone, then Thomas by himself, of course I was in the waiting room; and the 3rd was the doctor with Tommy and me to discuss his findings, diagnosis and treatment. When I told the pediatrician, she suddenly had a recommendation for a psychiatrist. Wow. Just wow. I mentioned that she said she didn’t know anyone when I requested a referral previously. Without missing a beat I said no thank you I like my guy.

We were invited to arrive at Alyssa and Sam’s at 2:00pm Christmas Day. Tommy and I decided to pick up Thomas from the group home a little earlier than usual so he could come to our house; open his gifts from us, have coffee and then head out for the afternoon.

Thomas refused to unwrap any gifts. He did enjoy this huge Spider-Man squishy pillow, but nothing else. Lelly and Samantha had left early for Sam and Alyssa’s house taking Samantha’s car to help Alyssa prepare for dinner.

We arrived to Alyssa and Sam’s, and soon after Sam’s family arrived; we began exchanging gifts. Alyssa and Sam gave Thomas a 1/2 zip sweatshirt. Thomas immediately said, “I don’t like it, I don’t want that.” And proceeded to say that phrase repeatedly even though Alyssa said, it was ok, we’ll take it back, etc… Finally I had to remove the bag from his sight and hide it. It didn’t matter. Thomas still had full focus on the freaking sweatshirt. Tommy took Thomas outside to his truck to distract him, pulled out the Spider-Man pillow, chatted it up.

Dinner was served and Thomas wanted to eat alone in the kitchen. Fine. Not a problem. Tommy set him up with a full plate. The rest of us ate pleasantly in the dining room, Thomas in full sight. Dinner was uneventful, pleasant conversation, enjoying the delicious meal Alyssa prepared.

We helped clear the table. While doing so Thomas announced he wanted to take his meds and go home. I told him it was too early for the meds, but he could still go home. Thomas then announced he did not want to go home. Over and over and over. Next began the “mother fucker” phase; to me. I said to Tommy, “He’s got to go back.” Thomas refused to get up from his chair all while now saying, “I’ll be good, I’ll be good.” Over and over as if he were a tape recorder. It was horrible and the whole scene from beginning to end was about 35 minutes.

Tommy and I kept apologizing to Alyssa, then Sam. Alyssa was unflappable, she went about her business as it this wasnt happening. Too many years of experience. But this wasn’t right. My kids have been through enough over the years. Finally Alyssa said to Thomas, “come on, I’ll walk you to Daddy’s truck” and gave him her hand. Thankfully Thomas conceded and walked out of the house with Alyssa and Tommy. I was going to leave with them, but Tommy said no. He wanted me to stay and enjoy being there and talking with Sam’s mom. My husband is so good.

Just because a special needs “child” grows up, they don’t necessarily grow up. It takes a shit ton of parenting to produce results that are acceptable, along with talented physicians. There was a ton of time, effort and experienced physicians on board to ensure medications are used for that person’s best interest; it can take one crappy physician to undo what took years to accomplish. Unbelievable, seriously.

I don’t want sympathy; poor you and Tommy, poor Thomas, omg did you try x, y and z?? etc… I know who will have empathy. Those who have come before us, btdt and all I got was this lousy t shirt. I know who will have no judgement.

Parenting special needs kids/adults continues longer than you ever thought it would. It does not stop at a certain age or any age IMO. Decision making doesn’t end. And your friends, real friends don’t ever turn away.

My Alyssa and her husband Sam became first time homeowners this past summer. Tommy and I could not be prouder of the both of them. From their wedding on, they’ve done it all on their own. Their wedding was planned without requesting help/advice/etc. I stood by in the background but did not but in or comment unless I was asked. And that was ok. I had a wedding; this was Alyssa’s turn; and she had every right to do things the way she wanted them done. Of course their wedding was beautiful and it was right after Covid restrictions so you can imagine how many people let loose, it was an awesome reception.

Fast forward from March 2021 to December 2024. Alyssa asked if she could host Christmas Day in their new house. Tommy and I were more than happy to say yes! It felt a little odd knowing I was not hosting here at my house. I had no, oh shit moments of panic of making sure the house was “right” days before Christmas. I went grocery shopping the weekend before Christmas Day and I was oddly calm because my mind wasn’t running here and there to make sure I wouldn’t forget anything. I have to say it was nice. Alyssa asked that we bring dessert/pastries. No problem, there was not a line for the bakery around the corner. Done!

My Alyssa prepared an amazing dinner; although I wasn’t totally surprised. She’s good. I loved spending the day with Alyssa, Sam, my girls and Sam’s warm family. Sam’s mom and I met years earlier before Alyssa and Sam even met. She’s the best; so real and honest. It was a pleasure talking with her and spending time together.

For half a second I wondered if I would feel odd not hosting Christmas. I was totally wrong in that half second. Tommy and I were so proud to be in Alyssa and Sam’s new house, enjoying them; enjoying having us spend the holiday with them.

Love my kids, they are amazing.

I am a registered nurse. When I began attending a local city college after graduating high school I had no idea what major to choose. It was an important decision to make at the age of 18. So many choices. My grades in college were very good. My GPA was great. I changed my mind at least 3 times before finally choosing to become a nurse. My Mom is an RN and only once asked me, “have you thought about nursing?” Honestly I had not.

I was accepted to the nursing program at the city college I was currently attending. I was so excited! But…I had no idea the amount of commitment, time, work, criticism and studying I was about to face. It was all worth it when I passed the state board exam earning my license to practice as a Registered Professional Nurse. I was 25 years old.

My nursing career has been diverse. Bedside/hospital staff, neurology, neuro ICU, ventilator unit. Office RN, chart abstraction (transferring paper charts to a specific computer program) in order for a facility to have full digital charting. Currently I am employed as a school nurse. The population I care for are medically fragile, special needs/special education students.

I didn’t really enjoy my other jobs as a nurse. I mean I did my job to the best of my ability. But there really wasn’t that feeling of yes!! I belong here, I’m good at this! I just figured that’s how things were. I never sought out to be a school nurse, never mind taking care of such medically fragile students. I answered an ad on Indeed dot com, received an email the next day to set up an interview and the rest is history.

I enjoy my job. I adore my co worker, Meg. We share an office. The nurses at my school are very busy. Most days Meg and I don’t sit and eat until 1:30pm. Our assigned and physician ordered procedures go way beyond bandaids and stomachaches. Even so I like going to work. I like talking to (most) parents. I especially like the majority of my co workers. Mainly we interact with teachers and para professionals; as well as physical, occupational and speech and vision therapists/teachers.

In my experience it is not often to have issues with staff. There are times when a staff member will “remind” me of what I need to do. Um, ok. I am well aware of my responsibilities. Stay in your lane. It is a rare occasion that I’ve had to “remind” anyone how to perform their job. That’s not my responsibility, hence I stay in my lane.

Recently I’ve had my nursing judgment and decisions questioned *and* judged negatively by non nursing staff. In the presence of other school staff. My nursing judgment and decisions are mine and my license that I worked so intensely for gives me the right to judge how to proceed with a situation at work. There are times when collaboration with Meg/another nurse is necessary. We are in our lane, the lane we were trained and hired for. I don’t want to step out of my lane. I worked too hard to get here.

This week I attended Thomas’ appointment with a new psych med prescriber. A psych nurse practitioner. She was very nice and was interested in what I had to say; however a staff member from his group home attended the appointment as well. I was not expecting that. The staff just got up and came with us. I was like, oooookkaayyy… this is new to me so I let things be. In the past the group home nurse would go with him and call me after to apprise any changes in his meds.

Well somewhere along the way things became massively fucked up. The original group home nurse was replaced. I met the newer nurse (Danielle) via telephone when she called to inform me that a specialist doctor’s appointment for Thomas went well. I had no idea he even had such an appointment. Danielle apologize profusely, she thought I was in the loop. Not her fault. During the past, I want to say 6ish months or so Thomas’ meds were lowered and changed without the doctor notifying and/or getting the permission of myself or Tommy: the legal guardians. Thomas does not do well without proper medication management.

As a result, we’ve noticed changes in Thomas. He’s not often happy when he’s with us. He’s not joking with his sisters or even glad they’re here for dinner.

When the staff spoke with the new nurse practitioner she said that Thomas curses a lot. That he curses, gets it out of his system and is “ fine.” No. That is not fine. When I would speak at the appointment, the staff talked over me as if I did not know my son. To say I was upset is an understatement. I was not going to get into an argument in front of Thomas or the NP, so I kept quiet. The next day I called the NP and explained that I was not happy, the staff member spoke over me and I did not raise my son to curse as a way of being. She listened to me and explained that she did increase one med due to what I did manage to say the day before, that I feel Thomas is angry. Hence the frequent cursing and other behaviors. We spoke at length of Thomas’ medication history, what worked/what did not, etc…

I also spoke to the house manager and described the staff member’s behavior at Thomas’ appointment. He said it was unacceptable. I also spoke to nurse Danielle and filled her in on the past events and the med increase from the new NP.

I have yet to deal with the psychiatrist who decided she did not need my or Tommy’s permission to change our son’s medications. Everyone I tell this to is shocked and appalled; as are we. Initially I was too angry to decide the next step. I’m still angry but I’m not clouded by that anger and can proceed in a calm manner.

I was very angry at myself for not being more involved with Thomas’ appointments. Lesson learned. No one will speak for him the way I do. No one will advocate for him the way I do. I know my kid. I raised him and he will always be my son.

Thanksgiving. Often an overlooked holiday, a hop, skip and jump to Christmas. Especially when it comes to the retail world. Today, Thanksgiving Day, I am thankful. Thankful for the life I have. Years ago I never would have imagined my home as peaceful as it is now.

Life is tough raising children and preparing for the holiday season. There were many Thanksgivings when Tommy had to drive up to Yonkers to get Thomas from residential school, have him spend the 4 day weekend with us and then take that drive again to bring him back. It was difficult. It didn’t make us doubt our decision to have him attend residential school, it made us very sad of the reality in front of us.

I’m grateful those days are behind us. Thomas is settled in a group home 10 minutes from our house and considers his home; his house. I’m quite thankful for my husband. We celebrated our 29th wedding anniversary this past month. On paper 29 years looks like many years. In real life, living it; it does not feel like that many years. Time can be so elusive, flying by some years and slowly crawling other days or weeks. I’m thankful we are in the place we are now.

So far in my lifetime I’ve learned more than I thought I ever would. Raising 4 distinctly different children and learning what makes each one tick has been something I never imagined in my wildest dreams. I’m grateful God gifted me with the ability to be their mother. I am far, far from perfect. I’m human.

I’m thankful my kids talk to me; really talk to me. And tell me the truth. There are times the truth isn’t pretty but it is real. I’d rather have the truth in my face than some made up unreal fantasy. Fantasies have a way of falling apart. In doing so they can only present the truth that’s been hidden all along.

I wish everyone a wonderful weekend full of blessings.

My best coworker friend has been out this week for a few days. When one of us take off we pray for the other one working that central office sends a replacement nurse who is able to keep up with our heavy assignments. Wednesday went pretty well, the nurse was experienced and mostly needed direction of what to do and where to go. I’ve blocked the majority of Thursday morning out of my mind due to extreme emotional and mental anguish. Thankfully the afternoon was salvaged by the deliverance of a nurse I worked with in the past who is an amazing person and an awesome nurse.

The following day was Friday! I arrived to work, clocked in my usual time and was cautiously optimistic that a competent coverage nurse would arrive. I came around the corner of where our file cabinets are and this younger than me person was standing in the office. She introduced herself and I asked if she was here for trip coverage or school coverage. She answered school coverage. Without missing a beat I asked if she was familiar with the procedures we perform daily. She said yes! Then she says, but I’ve only been a nurse for a year, I’m working at a local hospital and they aren’t very nice. I was so nervous about coming here. This is my first school coverage assignment. I smiled and said, you’re fine; you’re here, what ever you need to know I’ll show you. I said, I know nurses eat their young, but I’m not like that. I’ve been in your shoes and I know what it’s like to be treated “not nice”.

Visibly relieved, the nurse said how happy she was that she would be working with me. I felt so flattered. The work day began and we went over various nursing procedures. She picked up super fast and the morning went really well. I introduced my new co worker to the staff and some of my favorite students. You have to understand the population of the school I work at; the students are very unique and some have rare diagnosis. At one point the nurse was crying in the hallway. She said I’m sorry I’m getting emotional. I said, it’s fine; really. And waited for her to be ready to move on down the hallway. I honestly forget that there are people in this world who have no idea the students in my school exist nevermind attend school daily.

We had a relatively uneventful day. Quite a few of the students who need nursing care were absent. With a bit of extra time, covering nurse and I were able to talk a bit. She asked about Thomas and I gave the briefest summary of our life with him. She was so interested in my story.

I did not at all mind teaching her about our students. She picked everything up very quickly and I was confident in her knowledge and nursing skills. Not all nurses are the same. Some have more heart than others and some are more knowledgeable in procedural skills. I’ve been blessed to work with many gifted nurses. And I’ve also been fortunate to be able to pass on what I know to others.

My last post was concerning a report from Thomas’ day program that a staff member had pushed Thomas because Thomas was cursing at him. Unacceptable. No one should be putting their hands on Thomas period. I call the day program earlier this week and was told the push allegation was “unfounded” however the staff member did curse at Thomas. Still unacceptable. This staff member will be provided with re-training, extra training, blah blah. I said I wanted that staff member away from my son. I was asked if I wanted a meeting, with the day program I declined.

Thankfully I call a wonderful resource and friend who knows the situation and she advises me to absolutely have a meeting. Solid, great advice, thank you Jenn!! I call the program and let them know I changed my mind and absolutely want a meeting at my convenience, I’m not taking a day off so we can meet in the morning, nope. I work until 2:30. I’m called back with a convenient time (after I’m off work) and day.

I’m the meantime I’m also waiting to speak with Thomas’ psychiatrist who has been lowering his meds (why? I have no idea. As his legal guardian I was NEVER consulted). Finally get the psychiatrist on the phone, and introduce myself and slowly and deliberately. I asked why Thomas’ meds have been lowered more than one, the answer; I haven’t lowered that many”. (OMG) I mention that since lowering his meds he is cursing at the group home and day program, not to mention other behaviors that are increasing, that this is unacceptable. I deliberately instruct her that I am not only Thomas’ mother, he also has 2 legal guardians, myself and my husband, and we have NEVER been notified of med changes. Does she ask the group home staff about his behavior? I don’t know how to describe someone hemming and hawing but you get the picture. I had this distinct mental picture of a person looking at me while walking backwards. She then says that the group home nurse said i wanted a different psychiatrist. I said oh yes I do! She said she would let the person who does the assignments know. I hung up. These are the times you yearn for a grand slamming down of the receiver.

I find it unreal that a physician can fuck up, get super quiet and then push her patient onto another practitioner. If anyone can explain this to me I would gladly listen.

I next find out who the assignment person is. Found her in about 5 minutes on the phone. Call, get asked to leave a voicemail. Again I slowly and deliberately say who I am and that Thomas NEEDS a new psychiatrist; he could run out of meds and I can’t have this!

I get a call the next day. He has a new psych, an appointment next week and I will be informing her to telephone me in.

I have to say it felt a bit good to open my experienced, educated mouth and I did not curse once. I have not had to speak up recently. You don’t fuck with my kids and their mental stability.

This past week I received a phone call from Thomas’ day program. They rarely to never call me. I didn’t recognize the number, a local number and I picked up. The woman introduced herself from the day program and asked to speak to me. I’m like, yeeesssss…this is she… The woman tells me Thomas was cursing at one of the day program staff and the staff member pushed Thomas. They are investigating the incident. I asked if Thomas was ok, was he hurt and she assured me he was not. He was pushed away by the staff member, not pushed on the ground. I was quiet for a minute, taking it in. I really didn’t know what to say. I know my son. I know he curses at staff. I also know people have a breaking point. But…putting hands on a special needs person is not the answer. I thanked the woman for letting me know.

I told my husband about the incident. He knows Thomas curses and he knows our son. Thomas’ care manager spoke with Tommy and said the staff member was put on leave during the investigation. I think that is fair.

I still feel pretty quiet about this incident. Thomas; even though he’s an adult, even though he doesn’t live with us and even though he literally put me through hell; he’s still mine. I’ve felt that he would always be mine since Thomas was a very young child. I felt in my gut many glimpses of Thomas’ future when he was less than 2 years old. We knew nothing of his diagnosis and level of functioning at that time. I’m sure many people will understand.

I don’t think the person who pushed my son should be working with disabled persons. Whether the disability is physical and grossly apparent or somewhat hidden. I did not become angry when I learned Thomas was pushed. To be transparent and honest there was a small part of me thinking, well no one wants to be cursed at. Nonetheless it is unacceptable. Thomas has moments when he lacks control. It is up to those who are paid to be in his presence to maintain their own control.

This week is the 8th anniversary of my father in law’s passing. His legal name was Carmine which he did not like; at all. To everyone he was “Chick”. He was the youngest of 4 boys raised in Coney Island. He didn’t talk much about his childhood that I know of anyway. I know his Dad died young (cardiac) and so did his mom; complications of diabetes. I can only imagine how far we have come in prevention and treatments of both conditions.

When Tommy was older he called his dad Chickie or Chicklet. I preferred Chicklet. It made me smile. Chick always made everyone feel comfortable around him. He was truly a sweet man and would literally give you the shirt off his back. Everyone was called “Babe” and there was no way you could be offended by that. Not coming from him. I can’t not mention what a sharp dresser he was. And always wore cologne.

Chick had olive toned skin, green eyes and for the most part dark hair/salt and pepper. My husband has the same skin tone and beautiful eyes. Thomas and Lelly have a lighter skin tone and the same eyes. I never saw any pictures of my father in law’s family. I would have given my right arm to have seen one picture of his parents. When Lelly was born, the first time he held her he said she reminded him of his mother. That made me so happy for him. Lelly takes after Chick in quite a few subtle/can’t put your finger on ways. It’s funny how mannerisms and personalities are passed down. I love it when Lelly says or does something innocently and smiles; Tommy will pick up her action or expression and say to me, wow she’s just like my father.

Chick treated me like a daughter. Not an in law. I was privy to information not usually shared with a daughter in law and the trust was felt deeply.

I always felt welcome in their home even when I was younger. And after we had kids Chick was an incredible “Poppie”. We were welcome to the house anytime. And if one of my kids slept over, McDonalds breakfast was a guarantee. Sometimes he would go with me to one of the kids assemblies and he was such a proud Poppie.

We miss him.