I had a conversation recently where the person asked me if I thought Tommy and I were too young when we got married.We were both 25 when we exchanged vows; engaged for about 2yrs. I was in college when Tommy proposed and he asked my dad for his blessing. My father only asked that we not get married until I finished school. A reasonable request.

Tommy proposed, I said yes of course and we took some time to set a date since I had a year of college remaining and I wanted to get a job and work to save money to be able to pay for the wedding with Tommy. I graduated, passed the nursing board exam, landed a hospital job and we decided on November 12, 1995.

In retrospect, I don’t believe we married too young but I did have growing up to do. I was judgmental and did not always speak my mind at the best time. As a nurse I had no idea what/where I wanted to work and I had no confidence.

Tommy was so good, he still is. Over the years he taught me quite a bit. You show someone you love by actually doing; putting the other person first and having extreme consideration for your spouse. Just a few lessons I learned from an excellent example setter. My husband is very giving, warm and has such a generous nature.

Marriage wasn’t perfect for us. Throw a special needs child and then 3 girls in the mix. You grow up even faster. Learn more than you ever thought possible. Not to mention you now wear multiple hats that switch on and off incredibly fast.

Tommy and I talk about being humbled. Some people are never humbled, they just walk around like they never experienced anything that brought them to their knees. And it shows, not in a good way. Thomas humbled me. Man did he ever. Judgmental attitude; out the window! I learned very quickly to speak up in a very stern, compassionate, educated manner and at the right time.

There’s always something new to learn and ways to grow.

It’s no secret that I am a registered nurse. I am the mother of a special needs adult man. I remember when Thomas was very young and him having a shit ton of evaluations to enable him to receive needed services such as physical therapy and speech therapy from Early Intervention. I was not happy. I was angry. Not at Thomas, but angry that we were going through this. That I had to read evaluations performed by “experts” that were informing me that Thomas was indeed delayed but not tell me why. I had to watch him stumble walking, half medicated before an MRI and beg the powers that be that my son obviously needed more medication to sedate him in order for the test to be performed.

I did not recognize my feelings as “anger” at the time, I’m not that insightful. It wasn’t until we were both older did I see I was grieving my perfect baby/child and anger is a part of the grieving process. So when I speak with other parents of special needs children/young adults/adults there are many times we just “get” each other. Some experiences and emotions do not need an explanation. We just know, btdt; got the t-shirt.

I may have been through seasons of anger in raising Thomas, but I did not ever use profanity when speaking to a professional who was providing care to my special needs child. There were a few I did not like personally but I respected their position and that they were there to help Thomas.

The second time Thomas required residential school was right before his 16th birthday. I drove him to the residential school. Just Thomas and me. For his intake. To meet the care providers, nurses, social workers, staff whose care he would be in after I left. Yonkers, NY is a pretty decent ride from where I live and Thomas was very well behaved on the car ride. Quiet. We didn’t talk much, just listened to music.

I remember how the staff welcomed Thomas warmly and took him outside to look around so I could speak to the nurses and other therapists. I discussed Thomas’ meds with the nurse and with my hands shaking handed over the bag with his meds; I said to the nurse, ok this is it, I’m trusting you, here are his meds. I was holding back tears. Thomas’ meds were my job, my forte. I could have given lectures on Thomas’ meds back in the day.

Thomas spent time with people I had to trust were taking care of him. Especially people handling his medications. If I had concerns I addressed them. I never forgot that I was talking to someone whose job it was, was to take care of my son in one capacity or another. I didn’t personally like everyone involved in his care, but I respected that they were there and I was not.

This past week at work, a parent called me a fucking bitch. I’m still stinging from it. The parent brought in an incomplete doctor’s order to care for their child. I pointed out what was incomplete and the parent became angry and authoritatively told me how things are done at home and that they were telling me that’s the way to provide care. I calmly explained that I don’t take directives from parents. I take direction from a doctor’s order that is filled out completely. The parent briskly turned to leave and on the way out said, “fucking bitch”. I immediately, quickly walked down the hall in the opposite direction. I work with incredible people.

The experience at first made me laugh. In disbelief. That a parent would use those words towards a professional who is to provide care to their family member. What was the point? As more time passes I am stunned. As a mother with much experience in the special needs realm; I have been angry, confused, exasperated, frustrated, pick an emotion/state of mind. However I have never called anyone a name or used profanity towards someone involved in his care. Spoke strongly and passionately in advocating for Thomas?Absolutely. Cried at an IEP meeting? Yep. Cursed out a participant or professional who was incorrect or didn’t agree with their testing? No.

My husband would not back me up if I spoke ugly or cursed at a person who was doing their job in the care of our son. We are not like that. Thank God.

Tommy and I were married relatively young. We were 26 years old, engaged at age 24ish. I was still in college/nursing school. When Tommy asked my dad for his blessing my father asked him to wait until I graduated before we got married. Tommy and I were both in agreement of that decision. I graduated, passed my state boards and began working at one of the hospitals here where we live. At first I was happy to be working. All through nursing school our class was told, “ you know there’s a hiring freeze…you’ll be lucky to get any job.” So encouraging. It didn’t take long for me to realize working in a hospital wasn’t for me. Thomas was born soon after we were married. And we knew there were issues with him but in retrospect we really knew nothing. The more I worked at the hospital the more I did not like it. I didn’t know where else to go and at that time I wanted to be home.

We made the decision for me to stay home shortly after Thomas’ first birthday. A few months later I was pregnant with Alyssa. Tommy worked overtime relentlessly. We moved to NJ, lasted 15 months, moved back to Staten Island. The day we moved into our now house I was 8 months pregnant with Lelly. No it was not easy. I did go back to work part time for a doctor’s office. At a pathetic hourly rate. But, I got out of the house and had some extra money. When that didn’t work out anymore I left and was home again. All the while trying to get help for Thomas, be a wife and also raise 2 completely typical wonderful girls.

Times with Thomas weren’t easy. When he was 8, it was recommended that he attend residential school. They were all far from our home. One we visited, there weren’t any children present. It was weird. Like why wouldn’t you want us to see the students? Needless to say we turned that one down. We were highly recommended one particular school in Yonkers NY, over an hour away. They did accept Thomas and it was a good place. He stayed there for 3 years and in the meantime Samantha was born.

Fast forward to now, today. Thomas is settled in the group home, Alyssa and Lelly have moved out; one after another. Alyssa when she married Sam and Lelly months after she graduated and landed a good job in Manhattan. It’s Tommy, me and Samantha at home. There are times we don’t see much of Sam since she attends school, works part time and also hangs out with friends. I’ve decided I did actually want to be a nurse and work full time at a job I really like.

Tommy and I are able to have time alone often. It’s nice. Something we didn’t have when everyone was younger. We had Thomas right away and Alyssa and Lelly came along soon after. With Samantha bringing up the rear. It was a life I never expected to live. We had not one inkling that Thomas was going to be special needs and we did not say years ago, oh sure, let’s have 4 kids!

Don’t get me wrong I had a terrible time when Alyssa and Lelly moved out. That first time Sam and Alyssa came for dinner and she left with him was like oh…yeah…she doesn’t live with us anymore. Moving Lelly into her first apartment; I was fine until we began unpacking boxes. I cried and cried while helping her. It was terrible. I was so so sad to leave her in Manhattan.

I know they’re amazing, successful young women. Tommy and I did the right thing by raising them to be able to be independent and strong and to be able to leave us. Everyone tells you “oh your life will totally change when you have that baby.” No one tells you what it will be like when they move out. What that feels like.

I enjoy spending time with my husband; going on vacation. He makes me laugh probably more today than he did when we were much younger and he loves me.

I’ve heard this phrase quite often, especially after I became a mother. Parents with children older than mine would sigh, look down and say, “Oh…just wait… little kids, little problems. Big kids; big problems.” I did not like when that was said. Depending on my mood, I would respond, “Have you met Thomas?” Other times I would say nothing and walk away rolling my eyes upside my head.

I learned to be a very outspoken mother when Thomas was younger. When he was 3, he was evaluated by a physician who wrote that my son was “mentally retarded” per Thomas’ IQ. I had not read the eval yet when the psychologist on the team, before the team meeting quietly warned me that that was in that physician’s report. This was Thomas’ early intervention exit meeting. I was furious that the physician didn’t tell me this himself. I’ll never forget; I was by myself at this meeting. When we sat at the table I aggressively told the physician I thought he was wrong and I wanted an addendum written that I disagreed. The physician was arrogant and sputtered and argued and I stood my ground. Weeks later I realized I never received the amended report; called the early intervention center and asked why it wasn’t done. The receptionist became quiet, then told me the physician had died. Oh. Didn’t I read about it in the paper? He was very important, the head of this center, blah, blah… All I could think of was how cold and arrogant he was. I said, well did he write my addendum? I received the amended eval a week or so later.

This is one of the many meetings I sat in for Thomas. I was at every IEP meeting. Never over the phone. I wasn’t working outside the home so why shouldn’t I be there? The table was full of attendees during those years. And I would go alone. One time my wonderful friend Diane drove in from Long Island to come with me. It was great! She wore a red blazer and is kind of tall and everyone was soooo interested in who she was. Good times.

It was very frustrating that every professional evaluation until Thomas was about 6 years old would state his IQ level, the various testing methods that were performed, that he was speech impaired, mention the aggressive behavior at home, but never any kind of diagnosis. He saw many doctors. If I thought a specialist could help him, we were there. If they took our insurance it was a bonus. When Thomas was almost 6 years old I found a specialist psychiatrist in Manhattan. No he did not take insurance. I didn’t care. For the first time in my life I drove to Manhattan by myself. Definitely a milestone. This doctor diagnosed my son and he began medication. We stayed with this physician until Thomas attended residential school the first time.

When the girls were younger yes we had a few problems that commonly occur to younger children. The most traumatizing; lice! After many rounds of “that” shampoo, coupled with a few physician endorsed home remedies, Alyssa and Lelly learned real fast not to hug friends or put their heads close together. Nor hang their jackets at school one on top of another in a stupidly crowded coat closet. I actually had a heated argument with Lelly’s 5th grade teacher, that she was not to keep her winter jacket in the crowded closet with everyone else’s. I very sternly told my daughter to put her jacket in her book bag or in a large plastic bag that I provided. The argument with the teacher reached the Principal’s office. So insane. The solution? Omg, they cleaned out a closet in the classroom that was being used to store supplies and Lelly was to use that closet as her own personal coat closet. Yes, they did. Anyway I won and my daughter escaped lice that year.

No such thing as little kids little problems; big kids big problems. Nope.

The school I work at is a 12 month program. September to June same as regional/schools that teach neurotypical children. Then the beginning of July to approximately mid August. I believe 30 days/6 weeks, is the length of summer session. I’ve been working at my job for 7 years. Everyone who knows me, knows I love what I do. The decision to work summer has not been a difficult one to make. In years past the atmosphere and overall mood is lighter, there is a theme; this year was the Olympic Games of course. I can say I have not disliked working summer since I’ve been hired. Especially the past few years working together with Meg, my awesome co-worker/nurse/incredible friend. She’s the type of nurse whose way of thinking is, “let’s just get it done.” Never saying, “that’s not my student” or if she’s finished with her work; sit and watch me run around like a nut. Btdt with other co workers it’s not good.

When I was asked if I were working this year’s summer, I didn’t think twice and said I took this job to work, and to be honest summer money is good as well as loop the people. The hardest working teachers and paras are at my school. It’s always said that hindsight is 20/20. I really dislike that it is so so true.

I did not have an all too pleasant summer working. One could say well…it is *work* what did you expect. I know how hard my co workers and I work. I know we are unintentionally hidden from the majority of the public who aren’t even aware that my school and so many others like it exist. That our fragile students actually attend school and are able to learn and be taught.

This summer was the first time in my nursing career that I felt disrespected. I’ve worked in many professional environments as an RN, not to mention I am Thomas’ mother. Up until the summer of 2024 there were instances where of course I felt unappreciated, most nurses have felt that way and if they say they have never they are lying. But being disrespected; that is a new one for me personally.

Strangely enough, the disrespect came from all angles except from the parents of my students. And to top it off, disrespect and insult was glaringly displayed from another nurse! She works for a local pediatric practice housed within a large corporation. I witnessed and have documentation of her blatant lying and insult. Recently I obtained her name I do not know what comes next, if anything. Karma sucks and God doesn’t like ugly.

This is the first summer I counted down the days to the end of the program. Never before have I done that. I’m always like, ok…we agreed to work this…come on…” in a good natured way. This summer, the end of the day bell rang and I was out of there. I had had enough for one day.

I worked extremely hard as most nurses have; for my license to practice working as a registered professional nurse. I hold myself and other professionals to a high standard as well as the paraprofessionals I work with. Disrespect is not something I ascribe to. No one is beneath another, we’re all here for a reason. This summer, on the unfortunate upside I witnessed the true nature of persons I thought otherwise. Some so good and some not good at all.

I plan to enjoy the remainder of my time off appreciating my children and family, specifically spending time with and talking/chatting. Inviting myself to Megs house and looking forward to the good events on the horizon. As I write this I’m on the beach, it’s a good day.

This past week I was at the hair salon. I was seated next to a woman my age. She was getting highlights. I heard her tell the guy “oh, not too blonde” and I immediately smiled like, seriously? My guy was busy getting the bleach to apply to my hair. I am a total people watcher, always have been.

I heard highlight woman complain to her hair guy about “the young people” she works with. That they don’t want to work, they’re not the same as us, blah blah. I’m thinking woman please…I have very successful young adult daughters and a son in law who are amazing and so hard working. So of course now I’m staring at her from my chair. Then she complains that her daughter is studying speech therapy in college. Of course my ears really perk up. Why the eff would a mother have anything negative to say about that?? My eyes are getting big. Highlight woman goes on to say and I quote, “I mean she’ll be working with children with disabilities; I told her, go work in a hospital, at least you’ll work with adults.”

Yes someone actually said that in public and out loud. I was never so shocked and speechless in my life. Both as a mother of a special needs son and as a nurse who provides care to medically fragile, special education students. I began to feel anger. Like unreal anger. That there lives a breathes a woman/mother who possesses this point of view. I wanted to say something, speak up in the worst possible way. I wasn’t afraid of confrontation, truly I wasn’t. I was hesitant that I would lose control. I kept staring at this woman while the bleach worked its magic on my hair. She was seated next to me when we were getting rinsed and my skin crawled.

At one point I managed a very good look at her face to commit to memory. She was average looking. Nothing to stop traffic. But she had this self righteous vibe. And to top it off her highlights were like barely blonde. I mean come on if you’re going to do something, do it right! After our hair was rinsed she was seated a chair away. I was glad, I really didn’t want to be near her.

I read on Facebook; “In order to love who you are, you cannot hate the experiences that changed you.” I immediately thought of my experiences raising Thomas. I thought of highlight woman. She obviously has NO experience or connection with the special needs population. I’ve been immersed in that world for 28 years. How does one relate to someone like that? A person so blind to people all around you.

Before I had children I was quite judgmental of parents my age. I said the same ridiculous things we all say before becoming a parent. Habits my child would never develop. Behavior I would never accept. The list goes on and on. We all know that list goes way out the window in a short amount of time after you become a mom.

I’m thankful I was humbled so greatly by Thomas. I view highlight woman as a person I could have turned into had it not been for Thomas. Being Thomas’ mom is one of the toughest roles I’ve fulfilled in my life. There are more than a few experiences I wish never happened. But those experiences led to another chapter, growth and being humbled yet again.

Everything usually looks good on the outside. You never know what’s happening on the inside until you’re actually there; in person, seeing and experiencing it all first hand. There are a multitude of pictures and scenarios where everything looks “perfect”. Social media is probably the best example for today. Look at all the smiles! Omg what a great/wonderful/ time they’re having! Such a loving/polite/perfect family! Bullshit.

There is no perfect family/children/marriage/_______insert whatever you need to. I had a Facebook “friend” who only posted the best pictures of everything. The view from her incredible apartment in Brooklyn, how adorable and well behaved her young children were, you get the point. I unfriended her. It was too much. All that perfection.

When Thomas was much younger and his behavior was quite imperfect; he was also developmentally delayed. We had friends over with similar age children. One mother bragged and bragged about her kids. The kid Thomas’ age knew all his colors and shapes, she went on and on. I wanted to throw up. During the same time, there was another mother I was friendly with who knew the struggles I was having with my son. Yet that did not stop her from bragging about her perfect life and how “fulfilled” she felt as a mother. (Gagging…). Fast forward twenty something years. The kid who knew all his colors and shapes, I personally witnessed him get his ass whipped as an adult after he and his brother mouthed off to the wrong people. The “friend” who bragged about her life and felt so fulfilled? I guess her life wasn’t as great as she described. She cheated on her husband and left him for the other guy. No, really.

Maya Angelou, the poet said in so many words, people may not remember what you said or did, but they always remember how you made them feel. As I got older I learned there is no perfection. You have no idea what goes on behind closed doors and everyone has “shit”.

This past Thursday I had the incredible opportunity to share my story of Thomas…in 10 minutes. I think I took 12. A month or so ago my nursing supervisor and another supervisor called me at work. They said they were putting on a presentation about D75 nurses and what we do; would I mind sharing my story of Thomas? I said of course I would, however we weren’t even told about District 75 until Thomas was about 11 years old.

In NYC District 75 encompasses all exclusively special education students. In my school we have a huge variety of diagnosis and level of functioning. Medically fragile students who require complete care, students in wheelchairs that are fully capable of telling you their needs, neurodiverse students with medical needs you cannot visibly see, to higher functioning more independent students. An extremely diverse population. I don’t know the criteria for placement in District 75, but given Thomas’ IQ tests back in the day; yes he should have absolutely been a D 75 student.

Back to the conference. I drive into Manhattan through Brooklyn (my dad would have been so, so proud!) park the car and arrive at 4 no World Trade Center. So cool. Make my way to the 43 floor and I’m met by my supervisor, her supervisor and the woman who oversees all of school nursing across NYC. My audience was nursing supervisors from all NYC boroughs; all school districts both regional/general ed and D75.

It wasn’t difficult to tell what we went through with Thomas from when he was a baby to now an adult living in a group home. It wasn’t painful. It was simply me talking to a big group of nurses who needed to hear what a parent can endure when faced with raising a child with special needs. It was difficult to have a limited amount of time. I don’t know exactly how much time I would need to go into detail of raising Thomas. I’m used to writing about him here.

I don’t often have the opportunity to tell my story about Thomas. The most I usually say when asked about my family is, “I have a special needs son. Yes, he’s the oldest…no, I have four children.” Then I get “the look” and most times something along the lines of “and Thomas is your oldest??”

Nice.

Happy Mothers Day; to all the mothers. Every single one. I’ve always been appreciated as a mother. My husband and children have never not made me feel special on Mother’s Day and I’m so thankful for Tommy, Thomas, Alyssa, Daniella and Samantha. I used everyone’s “real” name even though I mostly call my kids by whatever nicknames they’ve acquired during their childhood.

I’ve had the honor of knowing mothers of every different circumstance. My own beautiful mom who raised me and taught me everything a mom teaches their daughter. My very spirited mother in law who didn’t know she was teaching me so many things. How to make meatballs like her, that I should only buy “good” shoes, to name just a couple of important lessons.

Moms of all “typical” children, moms of special needs children, moms with many children and moms of “one and done” children. Working moms, stay at home moms, single moms, married moms…It doesn’t matter how one becomes a mom. Natural pregnancy, invitro, adoption; I can’t think of all the methods that we become mothers, in the end all that matters is that we’re a mom.

I’ve learned so much from so many moms. Major, confidential in depth conversations in the school yard waiting for the kids to be dismissed from grammar school. I made the most awesome, understanding friends in that school yard. Neighbors/moms that became more than someone you waved hi to; a true friendship grew, so cool. A huge shout out to my moms of special needs children. Whether we met in person or over the internet, the support, encouragement and camaraderie is never anything but genuine. No one judges, and that common thread we share doesn’t break.

My best friend moms. The good and bad times we’ve experienced over God knows how many years. Times we’ve held each other up when we didn’t have the strength to hold ourselves up. The times we knew what had to be done, and didn’t need someone reminding us; so we stay quiet being silently supportive. Words fail me.

All the moms in my life, thank you. Happy Mothers Day!

Lately I’ve been thinking about raising my children; well still raising, Samantha is 17. I think about Thomas of course and the inexcusable and inappropriate treatment I received from the many professionals and experts I sought help from for Thomas. I get angry. Even after all these years. There are some physicians who are still in practice and I truly wonder how they still have a license to practice. Not because of how they either misdiagnosed or did not diagnose my child, but because of the many other children they gave poor medical care to either before they saw my child or after. Parents talk.

Raising Alyssa and Lelly in retrospect was very nice. They were very typical girls. They met all their milestones ridiculously on time or early. Lelly was my early walker at 11 months and then she began to run! She’s been on the move ever since. Alyssa as a child was very sweet and thoughtful. As an adult her personality is the same. Most importantly my Lelly and Alyssa allowed me to know what it was like to simply watch them *be* so typical and I loved to be part of their typical lives, I still love being with them and watching what comes next.

Many parent of special needs children say they wouldn’t change a thing. Whether it be that they wouldn’t change their child or they wouldn’t change their lives with their child. There are many things I would change. I won’t make a list. I wouldn’t change the way we raised Thomas, not knowing what was wrong made Tommy and I treat Thomas as more typical than he was. We weren’t given a correct diagnosis until he was 12 years old.

I would change that I stayed with his pediatrician much longer than I should have. It was only after we left the practice did I fully realize the depth of her belief that there was nothing seriously wrong going on with Thomas. At first, she refused to give me a copy of his chart; yes that is illegal. It was t until I wrote a certified letter giving her a date that I would come to get his chart that suddenly the chart was made available. And then I read parts of her notes. Notes about me. In my son’s chart. Not good. We had already established care for all our children with another pediatrician. One who we adored. She knew I was having trouble getting a copy of Thomas’ chart and by the time I got a hold of it I refused to give it to the new pediatrician. She had his immunization records and copies of reports from multiple specialists. That was fine.

I could go on… ok one more instance. When Thomas was 6, I requested a referral to a psychiatrist. She said she didn’t have one. So I searched and searched online until I found a specialist child psychiatrist in Manhattan. Of course he did not take insurance but who cared at that point. This doctor requested all the reports from other specialists/physicians as well as reports and the pictures of MRI’s and EEG’s that were completed. I had kept a diary/ log of Thomas’ behavior that he wanted to see. When the psychiatrist diagnosed Thomas along with appropriate medication to treat, Tommy and I agreed to follow his recommendations. I called the pediatrician and filled her in on what the psychiatrist said. Well it was a miracle… because she suddenly had a psych referral. I was speechless and said, I thought you didn’t know anyone? No thank you we like this doctor.

Life was very hectic back in the day. The thought of trying to find another pediatrician was overwhelming even though I was treated and viewed so poorly. When I did leave that practice it was such a feeling of relief. I only wished I made that decision sooner.

I can’t change Thomas, nor would I want to. I learned so much from being Thomas’ mom and met people I never would have crossed paths with otherwise. If I could go back and change him, my life would not be as it is now. I have a good life. There were many dark seasons and storms but God placed particular people in our path and they held lanterns to light the way and/or simply walked beside us lending strength.

When we requested to have Thomas be transferred to District 75 (special education district) and attend The Hungerford School at age 12, it was wonderful. No one ever recommended District 75. At every IEP meeting it was recommended that Thomas stay in District 31 which is for typical children and attend a special education class of 12 students/one teacher and one paraprofessional. That was so very wrong and completely inappropriate for his educational needs. But…no one told us about District 75, ever. And how wonderful it would be for Thomas.

So there’s a part of mind and Thomas’ story.