Menay O; mom to 4, Christian and thrift shopper on the side…

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

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

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

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

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

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

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

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

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

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

Micro managing continues.

I grew up in a middle class family; mom, dad, 3 kids and usually 2 dogs, at one time 3 dogs. I can’t say we wanted for or were denied anything as far as material possessions. Big gifts were for Christmas or birthdays. We did the “OG” back to school clothes shopping. We went to public school so no uniforms. New shoes for school. Sneakers usually for gym. At that time, like grammar school up to junior high years; name brands weren’t that big. Until the designer jeans trend exploded all over.

By the time I arrived at high school all I wanted were Levi’s jeans and my dad’s flannel shirt worn over the pre-requisite heavy metal concert t shirt. Daddy was so good natured about it too. He never complained, even when he rarely saw a particular flannel shirt again unless my sister or I were wearing it. At first he would say, hey put my shirt back, you’ll get bumps all in the front of it. Haha.

I was a “rocker” in high school. Went to a lot of heavy metal concerts. My first concert was Iron Maiden at the Garden. I cut school that day with a few friends to buy tickets. So many of my friends were going and we were taking the ferry then the subway. We all needed a ride to the ferry. My dad drove this work van. Omg it was no surprise my dad had this van. He drove all sorts of work trucks and vans. It was carpeted inside! Bahaha, no bed thank goodness that really would have been ewwww. My dad offered to bring us all to the ferry terminal. There was I think about 8 of us? We looked like a clown car when my dad dropped us off. People stopped and got out of their cars to count us getting out of the van. My dad was laughing so hard.

We saw local bands at clubs either here on the Island or in a larger well known club in Brooklyn. It depended on who was playing and who was driving. There was always a mosh pit going on. I avoided the mosh pit like the plaque; except for the one Slayer show in Brooklyn when the band came out and I was literally in the middle of a mosh. It was horrible I didn’t know where to go. I was literally thrown and landed up in the men’s room somehow. It was actually fine I just wanted out of the pit. I watched Tommy play drums at various studios for band rehearsal. And watched him play out. It was great. I was so proud of him.

We had really great times. I am glad there wasn’t social media back in the day. All of us had amazing memories and there were a few who always had a camera. It was fun to drop off the film and wait to see which pictures came out good, bad or omg! The teasing was fierce, mistakes were made and lessons learned. I realize how fortunate I was to have a great boyfriend, amazingly close friends and parents who welcomed everyone we brought home. Good times 😊.

Thirty years ago while honeymooning in Hawaii, Tommy and I were laying on the beach talking about how beautiful Maui was, the beach was amazing, we couldn’t believe we were there and married.

I moved in with Tommy about 6 months before we were married. I never pretended we were married during that time. Then finally the day arrived. To recite vows in church; witnessed by family and friends; changes you. It did me. I felt so connected to Tommy, legally connected in a way, but not in a bad/restricted manner. More like public/declaration. A marriage license is so much more than a piece of paper.

Getting back to Maui; I was just pregnant with Thomas and we wondered what he would be like. Of course we didn’t know he was a boy or any other details at the time. We imagined returning to Hawaii for our 20th anniversary and “the baby” would be 19. Would we be able to, would there be other children, after this one? We did not plan on 4. More like 3. However as much as one likes to believe they are in control, we are not. We make choices but that doesn’t mean we make the best choices or the outcome of those choices is what you expect.

Tommy and I had to make choices for Thomas that would affect the whole family. I was talking to someone today about when Tommy and I met Thomas’ first psychiatrist in Manhattan. Thomas was almost 6 years old. The doctor gave us his diagnosis and his recommended medications. We did not take this lightly. The doctor told us to discuss the situation and call him in a week or so with our decision. Then he said, “I hope you don’t think if you don’t do anything, if you don’t put Thomas on medication that you haven’t made a choice. You have made the choice to do nothing.” That resonated with me then and still does.

I don’t spend much time ruminating over decisions Tommy and I have made. There’s no point. I do wish we were never put in the situations we experienced. “We did the best we could with what we knew. When we knew more, we did better” as per Maya Angelou.

About 10 years ago I knew nothing of the world of enhancing facial features. It began with me first seeing an ad for semi permanent tattooing; having my eyebrows micro shaded. As a victim of the thin eyebrow phase so many years ago, I did not like my brows at all. It seemed I could do nothing to grow them back. I never had thick brows to begin with, and I have somewhat of a fair complexion when not tan. My brows bothered no one but me. So I took the plunge and made the appointment to have my eyebrows micro bladed. The artist tattoos strokes of ink to give a more natural appearance. Due to the artist who started my work then quit without telling me; I ended up with micro shading (finished by a different artist) which is a more solid eyebrow appearance. They came out nice so all was well.

This past Tuesday I had my brows micro shaded again since the color had faded. Yes it hurt. More than my tattoos and from what I remember more than the first time. The artist began with a numbing cream but after a few passes of depositing color and filling in various areas; it hurt like hell. It’s not even as deep as a regular tattoo. Anyway the procedure took about 2 hours and I was more than done. I have to mention when the procedure is done the brows are very dark and much thicker than you expect. I looked like the baby with one dark eyebrow from an old episode of the Simpsons. Samantha was very supportive by giggling every time she looked at me. Feeling the love.

I texted Tommy at work to warn him before he came home but wouldn’t send a picture. I did send a pic of the cartoon baby with one eyebrow. He came home and hugged me. I have a great husband. Yes he did laugh for about 2 days but I can take it from him.

I return to work tomorrow. We’ve been off from work since December 24 for the Christmas break. Thank goodness the brows have lightened up a little and the swelling is gone which only enhanced the thick appearance. I texted pics to my middle daughter and Meg the nurse I work with. Both will give honest feedback. They both gave the green light. Whew! I feared a new work nick name.

My school had its yearly Holiday Fair this month. The fair is 2 days long; the first day other sites of my school attend. We have many “off sites” scattered across the borough. It’s so nice to see the students who have transferred out of “the main” and of course the staff! Paras and teachers we used to see every day before they transferred.

Three moms arrived and were waiting for staff to accompany them to the fair on the 2nd floor. I happened to be walking by and offered to accompany them. The moms were all happy to be there, laughing and talking like close friends, saying hi to students. One mom explained to me their sons went to school together. They all knew each other for years. Suddenly I felt a wave of jealousy. I know. Sounds odd. Thomas always was bussed to school; he had an IEP and he was entitled to bus service to and from school. He didn’t attend our zoned neighborhood school. Back in the day only certain schools had special ed programs. I was not a PTA mom. If you know me in real life you totally understand.

When Thomas was young my amazing circle of support moms lived in Wisconsin, California, Long Island, Ohio, and Canada. We chatted online every night without fail. It was amazing. We were all very real with each other, supportive and willing to share any experience that could help someone else. What I witnessed in the elevator was in person camaraderie and support. And even though I felt the jealous pang, I’m also grateful for the support I found when it was almost easier to seek out help online rather than face to face.

When Thomas attended The Hungerford School here, I used to talk to the parent coordinator at that time. I wanted to be involved with the school in some way because I was so happy Thomas was there. As I mentioned I’m so not a PTA mom. I managed to volunteer at the holiday fair one year and it was awesome. There was so much student made merchandise. I loved it. And no student was turned away if they didn’t have enough money. You just accepted what they had and allowed them to buy an ornament or whatever they had their eye on. So, so sweet.

If you had told me then I would be working there now… no way would I have believed you.

No one makes me laugh like my husband. It’s one of my most favorite things about him. Tommy has always been funny, even when we met way back in the day. He doesn’t put anyone down to make himself look better or funnier. Tommy just comes up with comebacks or observations that are very unique and totally appropriate to the occasion and extremely funny IMO. While raising our kids we laughed at situations that were only funny to us. Some experiences and circumstances just called for humor or we would not have gotten through.

When we were in high school Tommy was known for drawing comic strips of everyone we hung out with. They were hysterical. My husband was no artist but somehow he captured each one of us.

My kids have their father’s gift of humor. I can’t tell you how many times as an adult my Lelly had me doubled over laughing. I don’t have particular examples as it’s usually something spontaneous between the two of us. I’ve had tears in my eyes when all my kids are together and a situation comes us that I can’t stop laughing about. My son in law Sam is usually one to unexpectedly burst out laughing. I love when that happens.

We used to have phrases for when things were really bad; no room for humor. Tommy would just pop out with, “You want a puppy? I’ll get you a puppy.”Like that would solve the problem haha. I would at least break a smile and things would lighten up a little. I don’t think I can live without Tommy making me laugh. We have a ton of inside jokes even with our kids. And times I burst out laughing when it was totally inappropriate, but haven’t we all?

I’ve written many posts about how Tommy and I met, that we were teenagers, became friends and then became a couple. He stood by me all through many college major changes and then finally nursing school. Nursing school and having a boyfriend was not easy. Nursing school consumes you and you see and talk to your classmates a lot more than anyone else. It’s been many years but you don’t forget.

Tommy proposed to me when I was literally in the middle of nursing school. Of course he asked my Dad before proposing and my Dad asked him for us to not get married until I finished school; and then Dad said, “there’s NO returns” haha! I wouldn’t expect anything less.

Tomorrow/Nov 12, will be Tommy and my 30th wedding anniversary. It’s pretty surreal when I think about it. Not that it doesn’t seem possible. But that I thought the years would feel longer, but they don’t.

Most marriages are unique in their own way. Every couple have their own challenges, difficult times; some have breaking points and the marriage is over. Tommy and I began our marriage with Thomas arriving 9 months later. I don’t regret having Thomas so soon or having our next 2 children as close in years they are.

This past weekend a woman asked us “so, what’s your secret?” I laughed because there is no secret. We have plenty of life to live and plenty of anniversaries to celebrate. I asked Tommy if he ever envisioned our life a certain way when we were first married or about to be married. And he said no, that he just took things as they came. I felt the same way. I know whenever I tried to plan out our lives a huge curveball would come and drastically change what I was thinking of. God has other plans.

I’m very happy to celebrate our anniversary together. I’ve grown so much since I was 25 and learned a lot about life and about myself. What I am capable of whether it be fighting and advocating for Thomas in the special needs realm or stepping back as my girls completed college and now Sam in welding school.

I never would have grown as I did without Tommy. He is a great man, patient, so smart, extraordinary sense of humor and he loves me.

I recently had the opportunity to talk with other moms of special needs children. One on one. I realize all our situations are different. All our children are different. When I talk to my current special needs mom friends who I’ve met about 20 or so years ago, there are no pauses, there are no, “I shouldn’t have said that.” There is only pure friendship based on the fact that we’ve all btdt/got the t shirt. That is the base of our friendship. The rest is layers upon layers of our varied yet similar experiences. There is no room for judgment.

I was asked to talk with a mother who has a special needs son, same age as Thomas and experiencing issues with her son’s medications. We texted and agreed on a mutually convenient time to talk on the phone. I was not informed ahead of time that this mother is what Tommy and I would call; “bitter woman.”

I am not a sunshine and rainbows mom when it comes to Thomas. I’ll say it as it is and I have little to no secrets. I have accepted Thomas for who he is. The mother I spoke to on the phone ranted, did not readily disclose her son’s diagnosis, would not go outside her health insurance parameters to receive help; but rather complain, “well…you know the good ones, they don’t take insurance.” Yes I’m well aware. This woman and I had not one thing in common other than the ages and sex of our special needs sons.

I asked her son’s diagnosis, she did answer and knowing the meds the kid was on asked if he also has a mood disorder. “I guess so, I mean they did say something about him and a mood disorder.” Then ranted about her son’s past experiences in school and how a mom she was close friends with became mad at her because she wouldn’t accept a placement with the friend’s son in a group home.

It was too much man. I explained our situation with Thomas when he was growing up. Her reaction? “Wow, I don’t know why I’m complaining so much, you had it way worse than me.” I was pretty much done at that point. And could not wait to get off the effing phone with her.

She knew Thomas lives in a group home yet she had contempt for that choice and voiced it. I got off the phone sad and upset. I told Tommy I don’t think I want to talk to anybody anymore. That no one gets us. Two days to get over that phone call. I don’t think I’ll be extending myself again to a stranger so readily anytime soon.

November 12 of this year Tommy and I will celebrate our 30th wedding anniversary. We met when we were 15 years old and became close friends. At 17 I realized I had deeper feelings than friendship for Tommy. Then came the whole inner debate, “What if it doesn’t work out: Then we won’t be friends anymore? What if he likes me too?” Oh the angst! Out of the blue one of my female friends expressed interest in Tommy to me. Oh no! No! Not going to happen! I made up my mind to stop the, “we’re just friends bullshit”. Tommy felt the same as I did, whew!

We dated, broke up, got back together, rinse repeat. I went on a date here and there during a break up but I knew there wasn’t anyone else like Tommy. At some point we became serious. Like, that’s it we’re together. I went to nursing school and at the end of my first year Tommy proposed. Asked my dad, the whole nine yards. Sweet and respectful.

When Tommy and I were friends, then in a relationship, I saw qualities in him that I knew made him a good man. He was a very hard worker, did not drink excessively, very respectful to me, very honest with me, talked to me. Tommy made me laugh like no one else, he still does.

We married after I worked as an RN for a year-ish. Big wedding that I wouldn’t recommend to anyone. Thomas was born the following July. We had no idea what we were to be facing in the years to come with him.

I’ve heard the phrase, “Oh so and so are so lucky they met when they did,” or “Wow what a great girl/guy, you’re so lucky!” Luck has nothing to do with anything. Tommy and I did not get married before we knew each other well. There can be red flags all over the place when people date each other. If one chooses to ignore said red flags or believes they can change a person…well I got nothing.

I’m no more lucky that Tommy stuck around when the shit but the fan than he is lucky I didn’t console myself with alcohol. There are no awards for doing the right thing. You get up and do what you have to do. When we found a specialist who could treat Thomas who did NOT accept insurance we went into debt to get Thomas help. As a mother I refused to be jerked around by know nothing physicians who were clueless in providing appropriate care for my son.

People who have successful marriages, careers, close families, relationships with their grown children are not “lucky”. There has been a shit ton of work behind every accomplishment. Work the public does not see. And lest I fail to mention divine intervention. God knows where you are and where you want to be. He has never failed to provide direction and meet me where I was.

I’ve spoken with many mothers of special needs children/adults/“kids”. It’s usually the mothers who want to talk. Men handle special needs parenting differently than women. Neither handle the situation better than the other per se. Mothers; although not all, seem more vocal and expressive.

I recently met with a mom of a special needs daughter. Her story is very different than mine as well as her reactions to the challenges put before her. Honestly it was interesting. I like the mom, she’s very honest and straightforward. Good qualities. However due to the extreme differences in challenges we’ve each faced over the years I had a difficult time relating to her life. We had extreme differences in challenges we faced with our respective children.

I’ve met parents whose special needs child is their only child or their last/youngest child. It makes me wonder, if Tommy and I were aware of what we were to face in raising Thomas, would we have stopped having children at least after Alyssa (our second); and missed out on the joy of our Lelly? Missed out on Samantha?I’m fairly certain we are a rarity with our oldest being special needs.

I’m so grateful for my girls and their typical-ness. They allowed me into a world I would never have known first hand if they weren’t our children. I advocated for them when needed, however it was night and day compared to advocating for Thomas. Like I couldn’t understand why I was fighting so freaking hard to have Lelly NOT hang her jacket in a stupid crowded closet during winter. I was trying to avoid yet another horrid case of lice for crying out loud. To appease me the principal had the teacher clean out a closet used for storage for my Lelly to hang her jacket in. Her’s alone. Oh. My. Gosh!! I found that effin’ hysterical!

All our journeys are individual with similar experiences overlapping here and there. I’m forever grateful for my people who walked with me when they could, and those who provided never ending support. Thomas is 29 years old. The journey is not over.