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.