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.