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.