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.

I remember when Thomas was 3 years old he had aged out of Early Intervention services (speech and physical therapy) and was entitled to attend special ed pre-school. I had a list of pre-schools and set up tours. It was so so hard. My mom came with me. I remember crying at one tour. Everyone was very nice, the school was very clean, the director was pleasant and knew every child’s name…nothing “wrong” with the school. Except me. It wasn’t supposed to be this way. I was not supposed to be choosing a “special ed” pre-school.

I had to got over it and I did. This wasn’t about me. I picked a school. Bussing was set up and Thomas was too big for the car seat on the bus. I freaked out big time and wouldn’t allow them to sit him on the bus seat strapped in with a seat belt. So I drove him. Across the island smack dab in the middle of AM traffic. Big mistake. I got over the seat belt debacle and Thomas took the bus.

There’s so many milestones for so many different kids. Alyssa met every single milestone like she read a child growth and development textbook. But in Tommy and my eyes she was simply amazing. Thomas had his own timeline and that was ok. I wanted to hug the occupational therapist for teaching Thomas how to tie his shoes! I had not a clue for how to tackle that.

Thomas began talking at age 4. We were living in NJ and I can only credit the amazing speech therapist he had. Thomas is speech impaired but he is verbal. And manages to communicate fairly well. We were so happy when Thomas began talking, however we now had to watch our mouths around him, he was a little parrot lol.

When Lelly came around she was an awesome baby, very smiley. And my smallest at 7.5 pounds. We called her the feel good baby since she smiled so much and my sister gave her the nickname “Lelly bird” because she was tiny compared to Thomas and Alyssa at birth. She absolutely had her own agenda. Walking at 11 months, climbing out of the crib at 15 months. Omg.

Thomas attended special education in a regional school district. He totally should have been placed in District 75, all special education school. To this day I have no idea why this wasn’t done for him. As parents we had no idea what District 75 was or that it even existed; what it was about, nothing. One more secret to uncover when you have a special needs child. Everything was an effin’ secret back in the day. When we were finally told about District 75…by our neighbor whose son in law worked at a D75 school here on the island. That’s what it took for us to find out. Unreal and only something God could do.

For once I was not mourning what should have been or what wasn’t supposed to be this way for Thomas. We found an amazing school here where we live! 15 minutes from our house! Thomas attended vocational classes, was part of the school community and had amazing teachers and therapists. I really, really enjoyed his time at Hungerford. He learned practical things like safety when cooking. He was out in the community often! It was a happy, peaceful time for us. Great memories.

My husband and I have had many conversations over the years concerning, “why”. Why did God give people a “perfect” child when they don’t even care about the kid? Why did God give those (insert any adjective) really good kids and they don’t appreciate them?

I usually answer, because if God gave “them” Thomas they would not have been able to take care of him, and what would’ve happened to him?” I didn’t say that to make myself feel better. I really believe it to be true. I’m not saying that we were “chosen” as Thomas’ parents. I don’t know if I believe that. I do believe that for whatever reason we get the kids we get as part of God’s will. His ways are higher than ours. It’s the parents’ decision whether they will acknowledge and address the differences of their child. Many people bury their head in the sand, refuse the child to be “labeled” and it’s a terrible outcome for everyone.

When more of Thomas’ needs became apparent, I made solid, concrete decisions of how I was going to raise him. No burying my head, no ignoring behaviors/delays and be a strong advocate. We made decisions and choices with the knowledge and instruction we learned and were told. The internet was not something we had at our fingertips in those days.

When it came to raising our girls thing was so very different. Everyone met their milestones as infants. Especially Alyssa. It was as if she read a growth and development textbook! Time to roll over? Check! Sit up? Check! She was a pleasure. Tantrums here and there, but nothing disastrous. Lelly…Walked at 11 months, jumped out of her crib shortly after. I had no idea how to contain her. Started running soon after walking, then began speeding down the street on the red flyer tricycle. Man could those legs go! Did I mention Lelly was a talker in school? So freaking funny! She would talk to a nearby student who would not talk back; unsure if he even spoke English!

Last but not least; Sam! Such a super pleasant baby. She was happy and Alyssa and Thomas loved her right away. Lelly…took a bit more time. There’s 5 years between Sam and Lelly so it does makes sense. Sam was a late talked and when she received speech therapy through early intervention, the therapist said she was the 4th child and didn’t *have* to talk. Everyone got her what she wanted. Made sense and She caught up pretty quick.

My point of this post; I was thinking of how much I tried to do right by Thomas with little to no “professional” help or advice. District 75 was never once mentioned as an option even though I repeatedly requested a vocational setting, and his IQ and academic performance met those standards. I had to request D75 myself when he was 11/12, after I was told that D75 even existed.

Tommy and I also had the task of doing right raising our girls. When Thomas was in residential school we made the difficult decision to not visit him every weekend. It was not fair for Alyssa, Lelly and Sam’s childhood memories to be full of memories visiting Thomas an hour plus away from home *every* Saturday or Sunday. We balanced life as fair as we could.

I have to say it was much less stressful spending time with Alyssa and Lelly (before Samantha) arrived and being present for school events and trips, etc when Thomas was in residential school. Neurotypical tantrums the girls displayed had nothing on a Thomas tantrum. During Thomas’ time at residential school we felt we could take the kids to Hershey Park for a few days. It was so, so great. Thomas was amazing, he was happy and fun. I loved that trip.

Every now and then I think back to nursing school. How difficult it was, the exams we studied for in study groups at each other’s houses. I was one of the three youngest students in my graduating class. The majority of students I took classes with were men and women in their 30’s, raising a family and now was the time to pursue their dream of becoming a nurse. It was a very supportive and non judgmental group of friends. Of course that made the whole experience much more tolerable.

We all had to take Anatomy and Physiology 1 and 2 classes before we began nursing clasPses. The professor who taught the class when I was a student was an extreme intelligent older woman with an unmistakable British accent. Very no nonsense, in other words, took no shit. I liked her but kept my distance lol.

We were learning about the brain. There are 3 membrane layers that cover the brain under the skull. I’ll never forget the first membrane is called called the “dura mater”. It is Latin for “Tough Mother”. The professor emphasized the protection the brain has enclosed in the skull made of bone; as well as the 3 membranes beginning with the Dura Mater.

This goes through my mind as I have been talking about raising Thomas. The difficult decisions Tommy and I made concerning medications, residential schools, do nothing so called professional physicians, etc… I’ve come to the conclusion that I am a Dura Mater or as my professor translated One Tough Mother.

I know quite a few mothers who could proudly wear that title of Dura Mater. Some tough mothers of typical children and many mothers of special needs children. I’m fortunate to be surrounded by tough mothers.

Things were a bit different this summer. I usually work 6 week summer session at my school. Last summer was brutal to be truthful. It was Meg and I which is our normal these days. But, I don’t know the whole vibe was not a good one. I couldn’t wait for the 6 weeks to be up.

This summer I applied to work half the summer program. The first half. It was approved. My last day for the school year was July 23. Go me. Meg is out on leave, not returning until September. The coverage nurse they sent for Meg was great. Very nice, a great worker. She would ask what needed to be done if I got caught up in a work situation and did what I asked her without batting an eye. Total team player.

On Augist 2nd, Tommy, Sam and I took off to Cape Cod to meet up with Alyssa and her husband Sam. The week has been really nice. I would have loved for Lelly to join us but she was visiting Spain and Croatia the week before. Go my Lelly!