I’m riding shotgun while Tommy drives home. We rented an airbnb with our daughter Alyssa, our son in law Sam and our Sam. Our vacation location: Cape Cod Massachusetts. This is the earliest in the summer months that I’ve gone away on vacation in 8 years.

Since I’ve been working as a school nurse for the DOE I’ve worked every 6 week summer session. Most years the weeks passed rather quick and the atmosphere IMO was pretty pleasant. Of course we all counted down the days until the end of the 6 weeks, all in fun. Last summer however was brutal. I have no idea what happened. I was overwhelmed with requests for trip nurses to attend class field trips. I could not keep up with paper work *and* perform the job I was there to do. So stressful. For the first time in 7 years I totally regretted working summer.

When the summer schedule came out I decided to apply to work half the summer session. Meg is out on leave and the break between summer session ending and the new school year beginning is shorter than in the past. I was approved to work the first 3 weeks of summer until July 23. No complaints, none from me.

So…the first week of August instead of working I spent with my family. Tommy making me laugh like only he can and loving being with Alyssa, Sam and Sam. I have to admit at first I was unsure. I mean the house was lovely, plenty of room for everyone. The weather however was on the cool side even for up there. This my summer! No cool weather, no. We went to the beach Monday; very nice. Tuesday and Wednesday cloudy and lower 70’s. Okay we explored and visited a few of the many towns in Cape Cod. Including Provincetown. One day there was good enough for me.

Then: the skies cleared!! Beautiful cloudless, blue skies, 74 lovely degrees. We all hit the beach Thursday for a few hours. Friday morning comes and I declare that I am going to the beach, that’s what I am doing. Everyone else, you’re welcome to come with or make other plans it’s totally fine. Tommy was indecisive at first. While I was sitting in my car getting the directions on my GPS, my wonderful husband taps the window, “I’m coming with you.” Yayyyy!

We had a great, peaceful, relaxing day. I people watched and eavesdropped as I always do. We went for quite a few walks up and down the strip of beach. The water was cold, not freezing but way too cold for me to swim. Plus there were many seals in the water. We were told that sharks follow seals and that there were many shark attacks up there. No thanks. I’ll stick to up to the knees only.

I’ve had interesting conversations with very different mothers over the years. Some moms were mothers of students I met while waiting to pick up my girls from grammar school. They were wonderful woman I became friends with in the school yard back in the day. We all lived in the area, had children of similar ages, and most of us were stay at home moms for whatever reason. Those moms allowed me to keep one foot in the typical child world and the other in the special needs world. They have no idea how special they were/are. I didn’t know where I fit in at the time.

Most of these friends knew I had a special needs son, few knew the struggles Tommy and I faced in having Thomas appropriately diagnosed. When we decided that Thomas needed to attend a residential school when Thomas was 8, I don’t remember talking about it with that group of friends. I didn’t think they could possibly understand. Meanwhile I felt like an imposter mother. Living life and running around with Alyssa and Lelly as if they were the only 2 children I had. I wanted to carry some sort of sign around that screamed I have a son too!

I had a whole other mom friend group who lived in my computer. Those moms kept me sane. We all met online and most of us lived similar lives in different areas of the US and Canada with our special needs child/children. We talked about our kids’ behaviors, medications, siblings, psychiatrists, teachers, IEP meetings, you name it; it was discussed. I had the distinct pleasure of meeting quite a few of these moms in person. And it was incredible.

One mom lived in Long Island, Diane. We picked a date to meet in Manhattan along with another mom who turned out to be not quite sane (little did we know). Anyway it snowed like crazy that day and we still decided to meet. Without ever seeing a picture of Diane I knew her right away! I can’t remember where we were, Grand Central maybe? We were laughing and hugging each other, so happy to meet each other in person.

A few years later a bunch of us met in Los Angeles. There was a conference for an author of a book that made him famous in our circle. Jackie, Cath and I shared a room; we had never met in person before. We talked on the phone before the trip. When we finally met it was awesome! We knew each other so well from chatting online there wasn’t any awkwardness. I’m so so glad I made the trip to California and had the pleasure of meeting such incredible friends.

My friend Jenn is my oldest friend. We met when we were 17 years old. We worked together at this popular children’s clothing store back in the day. Good times, lol! There were a few years that we lost touch, she went to work in Manhattan and I was in college. Our paths crossed when I was pregnant with Alyssa and I ran into Jenn’s mom at KFC of all places! We reconnected and even had our girls in the same years. 1998 and 2001. Jenn is the type of friend that I only hope many other people have. The one you can go months without talking and it doesn’t matter; the next time you do talk, it’s as if time hadn’t passed. You pick up where you left off. The one I can talk to and say, “ well YOU know!”

Friends like this are so important in this life. I am grateful.

I wrote a few months ago that Thomas’ medication regime was horribly disrupted. The psychiatrist whose care he was under; without my permission lowered the dose of one of his much needed medications. One that controls aggressive behavior. This physician took the word of group home staff that Thomas was “fine” and without once consulting me; his mother and legal guardian kept decreasing the dosage until my son was on the verge of being hospitalized.

When I spoke with this doctor on the phone she said, “I think you need to work with another physician.” Nice. If I or anyone else I know fucked up their job to this extent we would at the very least be fired. Not this person.

So fast forward Thomas has a new psych practitioner who listens to me; Thomas’ mother. You know the one who raised him and knows him. The one no one listened to or believed for many years. The new psych NP immediately raised the dose of the medication that was lowered to an almost non existent dose. We didn’t see an improvement immediately of course, these meds take time to work. But after increasing steadily the dose; Thomas was soon almost himself.

I blamed myself. I let my guard down and trusted other people to make judgement calls and decisions only I am qualified and experienced to make. When you have a special needs child you can’t look away for a second. No matter how old they are or where they are living. No one will advocate or care for your child the way that you do.

In our situation with Thomas living in a group home, there has to be a level of trust with the staff. His house has an open door policy. We can come and go see him as we please. We’ve made a few visits unannounced. Not to catch anyone off guard but because Thomas had asked us to bring him something.

This issue came to the forefront of my mind again this past week. I already annoyed at the powers that be where the disgraceful excuse of a doctor is employed, received a phone call. From the head of the physician who is head of the department. I verbally had it out with him. I did not curse; I did not hold back. I was dignified and verbally unleashed my anger. The previous exchange of my thoughts and anger was done via email. I know I exasperated this man. He threw in anything he could in an attempt to shift blame away from that physician. I caught on right away and called him out. Of course he denied doing so.

It has been years and years that I’ve experienced this anger. I’ve forgotten how much it takes out of you. And until the situation has been appropriately resolved there is only a thin, easily disturbed bandaid somewhat covering the fresh wound that has been exposed. There used to be a thicker scab that had grown over the would as it had healed from the early years. Scabs hurt when they are unexpectedly ripped off.

I never thought what my kids would be like as adults when they were children. Most of the time I was trying to get through the day and hoping I was doing a good job. Especially those days when Thomas was off the hook and we didn’t have an accurate diagnosis. Every now and then my girls will bring up dinners I prepared when they were much younger. Yes I had a tendency to repeat certain choices. In my defense cooking dinner and making sure all were safe in the living room was not an easy combo back in the day. In the same conversation with the girls I’ll say, “Oh poor you! You had a mother who cooked dinner for you every night… besides, you lived!” Ha! These days with everyone out of the house except Samantha, Tommy does the majority of cooking dinner. Yes, I completely adore him for this. He’s such a great cook and not afraid to try new things. If Tommy is working late I fall back to my old regulars, then again there’s always tacos!

I really, really enjoy my kids as adults. When we have dinner together it’s nice; comfortable. For whatever reason Thomas insists on eating at the kitchen island which is completely fine. We are just a few feet away at the dining room table. My girls talk and laugh. It’s nice. I like them being together. Thomas talks too but only what he wants to tell us. Or he likes to say that he needs new (insert: socks/shirts/underwear/etc). Meanwhile he does not. The man likes to shop. And he knows his meds. The last time I picked him up he kept saying, Mom I’m missing a “7”. ( 7:00 medication) Well homeboy was right. Come to find out he had been without a med that pretty much holds his behavior together for more than a day or so. I was not with another med issue. It was taken care of but still. Being on top of things does not stop when you have a Thomas.

When everyone was younger I couldn’t imagine what kind of adult anyone would be. But in retrospect the writing was on the wall. Thomas has his own category. Our first baby. We totally adored him. He was an incredibly pleasant baby. When I returned to work I used to keep a small framed picture of him on my med cart. Everyone got a kick out of that.

Thomas taught me a ton; such as to be his advocate, to not be afraid to speak up loudly no matter who I was dealing with, and most importantly I was taught me that he is mine. Thomas changed me and humbled me.

Alyssa was an amazing baby hitting every milestone on time as if she read the baby development book. She was so very sweet. A tantrum here and there. But for the most part Alyssa was amazing, refreshing and kind. So smart, in all grades up to high school she was in honor classes. My Alyssa said she was graduating college in 4 years and kept true to her word.

Lelly was a very fun child with that smile and OMG fast legs! She walked early, ran early and rode that tricycle down the street in lightening speed. We called her “the bird” she was my smallest baby at 7.5 pounds and my father in law said she looked like his mother. I loved that for him, we do not have one picture of Chick’s mother. Daniella was also referred to as the feel good baby. She smiled so much you could not help to smile with her.

Samantha was/is totally and completely her own person. When we found out she was a girl, my first thought was, “oh, okay…I’m raising 2 other girls…I got this.” Ha! Freaking know it all I was. I did not remember that all children are their own person.

Their personalities as children do come through as they reach adulthood. Thomas, (when his meds aren’t effed with) is pleasant, affectionate and “gets” sarcasm. He understands more than you think and will speak up if he knows something is off.

My Alyssa, still sweet, still meeting set goals and still amazing to Tommy and me. She is independent and has her own family with her husband Sam. They are living a life that is their own.

Lelly, after running so fast as a child, managed to talk the powers that be in high school into allowing her to graduate a semester early. She slid into college at the last hours that applications were being taken and then; graduated with her bachelor’s degree a semester early. She moved into her apartment in Manhattan 4 months after graduating college at age 21.

Samantha. Sam. The 4th and youngest. She is like no other of our children. And that’s ok. She’s herself and her own person Still keeping us on our toes. Sam is still growing and I’m grateful to witness that growth. Sam speaks her mind and is very independent.

When everyone was younger, like when Thomas was 10, Alyssa 8, Daniella 5 and Samantha just born, our house and hearts were so full. I often hear a saying in my head, “the days are long but the years are short”. So freaking true! Thomas will turn 29 in July. It’s hard for me to believe I’ve been his mother for that long. That I survived all the evaluations, diagnosis (correct and incorrect), IEP meetings, medication decisions, residential school decision, driving 2 hours for meetings at said residential school. Sigh. I would do it all over again.

Enjoy your kids. Whether they’re young or older. There are many difficult seasons and many happy seasons, as well as peaceful seasons. Sometimes you have to let go. I could wax poetic for days, but I won’t.

When Thomas began attending the Hungerford School we were so happy; after having him attend residential school for 3 years, then commuting daily to Yonkers for their day program for another year and half. We had no idea what school Thomas should attend when he was discharged from residential school. We had no guidance and no one ever mentioned District 75, not once. I didn’t even know about District 75, how it was the perfect fit for Thomas. I knew he didn’t belong in a typical school in “regular” special ed. But… Tommy and I weren’t aware of any other options.

Tommy was talking to our neighbor about Thomas commuting daily to Yonkers. Our neighbor’s son in law was a teacher at a D75 school 10 minutes from our house; The Hungerford School, serving ages 11 years to 21 years. This neighbor by chance conversation told us about the best school for Thomas!

I began calling the school to request a tour. I explained our situation. I was refused a tour, “we give tours to those who are recommended to our school”. My answer? Well how am I supposed to ask for a recommendation if I don’t see your school?? This went on for a couple of months. Finally I was allowed a tour. I fell in love with the school. It had everything I wanted! Vocational programs, a hands on bicycle shop, a classroom set up like a mini apartment to learn washing dishes and doing laundry, making a bed, and regular trips out in the community, everything. I requested a CSE meeting for change of placement and bam, done!

Thomas had the best teachers and paras and staff during his time at Hungerford. Everyone was very communicative, professional and encouraged independence. I had thoughts and visions of Thomas continuing attending school there, going to the prom and graduating. As usual plans that involve Thomas changed drastically.

One of his meds; the one that was holding him together; had to be discontinued due to a serious side effect. There was no way around it. As a result Thomas became violent and we had to place him in a different residential school. One for older students. Thomas was admitted shortly before his 16th birthday. The school was amazing and met all that Hungerford offered. It was a great relief.

In the meantime, life went on at home. After many years of being indecisive if I wanted to still be a nurse I applied and landed a temporary position for an RN with an agency. I was trained to transfer medical information from paper charts onto a specific computer program. It was great. Monday to Friday; 9-5, varying locations. I had to work in Brooklyn. After rarely to never parallel parking, I became an instant/fast learned and then a pro! You have no choice in Brooklyn.

I was laid off from the agency job. It was ok as it was a temp position. But; I missed making money, I missed working. I scoured the job site Indeed constantly. Then, there it was; a job posting for Registeted Nurses to work in D75 schools. I applied and then hemmed and hawed over hitting the submit button. I had an idea of what I was in for but not really. Finally I hit submit. The next day was an email requesting me to come in for an interview. Of course I said yes. All in one day I took a nursing exam, was interviewed and then hired! It was surreal.

Never did I think once I would be a school nurse. Never did I think I would work in a D75 school and to have that school be where my son was a student? Nope. The population I care for are medically fragile as well as student requiring special eduction services. I love it. I love being a D75 nurse.

There is a routine of timed procedures that must be completed everyday; but no day is the same. I worked 3 years in a neuro unit right out of nursing school. I never saw a person have a seizure. It took a week or two working at my school to witness a student having a seizure and two students do not present the same. I’ve responded to emergent situations where after the adrenaline has worn off I just want to sit, maybe cry, but I don’t.

When I wasn’t sure being a nurse was “me” I tried my hand at different jobs. I sold expensive designer sunglasses in high end retail, and I was good at it. But the job didn’t work out for my family’s schedule. Amazing how the only jobs that have worked out for me and my family were the positions where I worked as a nurse and did what I worked so hard to learn to do. God puts us where He wants us.

This November Tommy and I will celebrate our 30th wedding anniversary. It kind of blows be away mentally because in my mind we haven’t been married that long, you know?

Tommy and I met each other when we were 15 years old. He was sitting on the stoop of a corner store and when he looked up at me all I saw was those green eyes, wow. I never locked eyes with someone like that at the ripe old age of 15. To be honest I don’t think I’ve ever locked eyes like that with anyone else since. We became close friends. He made me laugh. One thing we did really well was drawing comic strips of me, him and our friends and teachers. I still have most of them. In one comic, Tommy told I think it was the shop teacher, “I’m going to marry Menay.” So freaking funny.

We began seeing each other when we were around 17 after dancing around the old, “ yes I like him, but we’re such good friends I don’t want to mess that up…” angst. I made the first move. Yes I did. I was afraid if I didn’t he would find a girlfriend and I would be left in friend status. Oh no. I leaned in and kissed him; on the lips; more than a friend kiss.

We were a couple since then. It was November 1987. We had the usual teen/young person drama and occasional break ups. I dated here and there as did Tommy during those break ups but never anything serious. We would eventually end up back together. The break ups were terrible since we had been with each other for so long. I worked at an auto parts store during college and my co-workers (mostly guys) would announce, Menay is on the market! I could have killed them.

I remember the entire time we were together I never thought of marriage. It was truly one day at a time. We had fun together and I couldn’t imagine being with anyone else. When I finally picked a major in college; nursing. It was during that time that Tommy asked my dad if he could propose. My dad of course said yes; but not without adding, “Hey, and no returns!” Dad also asked that we wait to get married until after I graduated nursing school. Tommy proposed in Rockefeller center in front of the big tree. Yes, he was on one knee. I was shaking so bad, it was totally unexpected and I felt this mixture of joy and panic. Joy because Tommy wanted to marry me, panic like OMG this is for real!! I said yes, crying and shaking.

We had a long engagement, like 2 and a half years I think. I had a year or so left of school; graduated college, and landed my first job. We saved to pay for the wedding ourselves. For whatever reason, the “big” wedding was the way to go. If I could have a do-over smaller would be the choice and save the rest of the money. We were the first of our friends to get married.

(Almost) Thirty married years and 4 children later; Tommy still makes me laugh like no one else. We laugh when it’s not quite a “laughing” situation. But there are times you have to laugh or the situation will break you. Our road has been different than most others. I can’t say I wouldn’t change a thing. But there’s no guarantee we would be the same people without the experiences and challenges we’ve faced together. I wouldn’t remove the lessons I had no choice but to learn because that would mean less growth as a person.

I’m very glad we’re together. I’m so glad we grew together. I know I grew up a lot over the years. When we were on our honeymoon, lying on the beach in Maui we joked that we would return to Hawaii for our 20th anniversary. Twenty years passed rather quickly. Hawaii was not in the cards and that’s ok. So much had happened within those 20 years, and we were still together. That’s what mattered.

So what began as two teenagers with a close friendship and many talks, laughter and time together; evolved to marriage, kids, houses and all the challenges in between. I can’t imagine doing this life with anyone else.

We found out this past November that the psych doctor who oversaw Thomas’ meds was gradually taking him off these much needed medications. She was making these changes without consulting Tommy and I, nor did she have our permission as Thomas’ legal guardians to do so. To say I’m pissed is an kunderstatement.

After making it known this is unacceptable, Thomas was assigned a new psych practitioner. One that Tommy and I like. She listens and takes us seriously. Thomas is not doing well without the appropriate medications on board. I don’t know how to express how angry/confused/in disbelief I am that this happened. Not once were we consulted and never was anything signed granting our permission for this asinine plan. We know better for fucks sake. I’m past the anger but still in disbelief/confusion at the unprofessional abuse of her medical license.

The new psych nurse practitioner has a reasonable plan, one that she discussed at length with Tommy and I and has no problem contacting me with a change of direction of the plan, or if a totally different plan is on the table. That is how it should be; and the way it has always been in the past when it came to Thomas’ medications. Until now, and we’ve been at this 23 years I have never had a lack of or absence of communication with any of his doctors. Not one.

My son is complex. Not a brag. Just the way he is. He’s never been easy to treat and find the “right” med combo. To think that someone with a medical license felt they had the right to destroy his stability because, well just “because”. I have not been provided a reason or any explanation. I’m not done.

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.