A Different Normal

Let me just preface this by saying I don’t miss the days when my kids were all younger than 10 years old. Life was hard yo! Thomas was off the hook and the girls were; well… girls. No one was “bad” or made me sad or regret that I had them. It’s just that I don’t think people will admit that raising kids to be responsible adults is not an easy task. Throw a special needs one in the midst and boom! A really different kind of family dynamic exists. Especially when that social needs child isn’t properly diagnosed until they are almost 12 years old and you feel like you’ve been floundering in the past.

Anyway…it’s a new normal here in my house. Thomas lives at his group home and has a life there, Alyssa and Sam are living their best life together and Lelly recently moved out to live in Manhattan. No one was “kicked out.” Alyssa and Lelly each left home on their own accord with their own individual plans for their lives. I miss them though. With Alyssa there wasn’t any chance of her staying in our house; she was getting married! But Lelly, ah Lelly did things her way just as she’s been doing all her life. She graduated high school early, graduated college early, landed a great job and quickly found a roommate and nice apartment. It all went so fast but I wouldn’t expect any less from her.

Dinner these days are usually just Tommy and I. Samantha has been at volleyball practice everyday after school so she eats dinner when she comes home later. After she eats she usually goes up to her room and we don’t see her for the rest of the evening, pretty typical teen behavior. And that’s ok. Work has been kicking my ass lately so I haven’t been the most talkative person on the planet.

I seriously never thought of my life the way it is now. People would say to us to enjoy the kids when they’re young…they grow up fast…you’ll miss these days…Yeah, yeah. We did enjoy them, they did certainly grow up fast but I don’t miss those days. I like my quiet house, sometimes it’s too quiet but I’ll live. I like spending time with Tommy. He still makes me laugh the way he did when we were younger. He’s very quick witted and he gets me. This weekend Samantha is away and Tommy took off on his motorcycle, I already did the grocery shopping and hit the thrift store. I should vacuum bit sitting here is more enjoyable.

The Way It’s Supposed To Be?

We moved our Lelly out to her own apartment in Manhattan this morning. She was the smallest of all my 4 babies weighing in at around 7.5 pounds. We used to say she was small like a bird and my sister nicknamed her Lelly Bird. Actually her real name is Daniella but 5 year old Thomas couldn’t say Daniella; it came out Dallella and somehow morphed into Lelly and that is what stuck. We still call her Lelly although when she’s around her friends I try to call her Daniella. She’s officially a renter with her own signature on a lease. Very grown up for 21 years old; in my opinion anyway. Just as grown up as Alyssa and Sam getting engaged/married and then paying their own way for it all at 22 and 23 years old.

I’m crying today at the drop of a hat over Lelly moving out. This morning Tommy and I helped her move all her stuff into the U-Haul and drove her to the upper east side where her apartment is. I was ok until we drove away from our house. I began holding back tears and swallowing the urge to cry. I was ok the drive uptown. However seeing all her “stuff” in the bedroom of the apartment hit me like a lead balloon and the next thing I know I’m crying, and so is she. After a few hours there wasn’t much more we could do. The rest of unpacking and putting away her belongings was up to her. So Tommy and I decided to leave. That was terrible. We kept hugging and crying. It was so sad. I’m going to miss living with her so much. No one makes me laugh like Lelly, except for Tommy of course.

So after bringing the U-Haul van back, Tommy asked was it ok that our 2 older girls became so independent after graduating college; when they reached their early 20’sand moved out on their own. Whether it be because they were married like Alyssa or like Lelly did; chose to move out while still single. I said I guess this is how it’s supposed to be. But honestly I don’t know, I mean nothing about our raising children was typical starting off with Thomas. I tried my best with the girls all while killing myself to get Thomas help. I wasn’t ready to have the girls move out so fast. I was enjoying them so much as adults. The talking, the laughing, just being together. It’s nice. No pressure, no worrying about doing things “right”.

This doesn’t seem fair.

The Jersey Shore and Samantha

A couple of days after the summer program ended, Samantha and I spent 4 days at the Jersey Shore in a quiet town called Ocean Grove. It’s a “dry town” meaning no alcohol, quiet, mainly Christian influence. We really like it there. It’s also our go to beach for a day trip. No one bothers you there. There’s no loud boardwalk with tons of loud kids playing loud games. If you haven’t noticed I don’t like loud kids. Not to side track but when Tommy and I were in Aruba this summer we ate this Italian restaurant. I was seated facing this family with 3 children ages approximately 14 years, 10 years and 7 years old. The 2 younger children were so loud and totally obnoxious. Yelling at each other, banging on the table with cutlery/silverware, grabbing each other. I was so appalled. Never have my own children acted like that in a restaurant nor have my friends’ children. Like it just would NOT have been tolerated. And guess what? I looked over at the parents who were sitting with their children and they were both ignoring the kids and on their phones. Unbelievable! Thank God they were finishing up dessert and then left.

Anyway I digress; I was talking about staying in the town of Ocean Grove, NJ with Samantha. We had a really nice time together. We only spent one day on the beach because someone (who was NOT me) didn’t use sunscreen and ended up with a pretty decent sunburn. So we did other things, one cloudy day we visited my mom who lives about 20 minutes away, went to Asbury Park boardwalk where they have this arcade booth with just about every pinball machine and video game ever made. It was really cool. I didn’t play any games but my Sam certainly did. She had a good time and we even had a pictures taken in an old fashioned photo booth, the pics came out nice.

I even visited a psychic (yes I am aware as a Christian it goes against Christian beliefs) but I couldn’t help myself. She really didn’t tell me anything I didn’t know, except that she said there is someone in my life who would like me to “crumble,” to see my life fall apart. That was interesting. I’ve already crumbled when Thomas was violent with me. I told Lelly and she said, “Oh mom, you have a hater!” I couldn’t help but laugh a little at that.

When we arrived home we found out Samantha made the varsity Volleyball team for her high school! Yayyy! Go Sam, Go Sam!! We had a nice time together, I’m glad we went.

New School Year/New Everything

Next week begins the new school year 2022-2023. It also begins a new chapter for the school I work at. We have a brand spanking new building to house our students. It’s exciting and nerve wracking all at the same time. My computer at our old site was older than dirt, a desktop with a tower if you remember back far enough. I found out that we are being assigned brand new computers, yayyy! Rumor has it we also have a color printer and an ice maker. The ice maker is so cool because at our old site we used disposable cold packs for anyone who needed cold/ice applied to an injury. Now we can make up actual ice packs and keep them in the freezer. Sounds so silly to be happy about things a lot of people take for granted in their workplace. But that’s the way it is or was for us.

I miss my students. Don’t get me wrong I’m so thankful for my time off and I’m not looking to shorten the vacation I’m on, but I do miss “my” kids. I actually had a dream about one of my favorites, that this student had something wrong with them and I woke up a bit freaked out and had to realize it was only a dream. When I’m off for a decent amount of time I find I have dreams about my students. But the dreams are usually about me forgetting to feed someone or forgetting what new class they’re in. The last dream I had about this new school building had me running all over the place as if I were in a maze to find students who needed care in a timely manner. Weird.

I miss my co workers as well. When you see people everyday you form relationships and learn about their lives. Recently I’ve been talking with a social worker that has been hired to provide counseling to our students. I really like her and I find we have a lot of the same goals for the students and the parents we serve. During the summer program I ran down to her office to tell her something minor and we ended up chatting for quite some time. It was nice. She wasn’t aware of Thomas, that he is special needs and had attended the school we work for. When I explained Thomas’ situation and former experiences it took me back in time and I felt I was reliving his last year or so before he began residential school. It was unsettling in a way and I got over it but still…you would think after all this time it wouldn’t get to me. But it does. Not that I don’t want to talk about Thomas, I’ll gladly tell my story if it would help someone else. I guess I was caught off guard that day.

So here’s to a new school year! I hope we are all successful in meeting the challenges we face in performing the tasks for the different jobs we all have!

Going Back Home

We’re flying back home tomorrow. Vacay is ovah, I say in my most New York accent. We’ve had a great week in Aruba. The people here are so so calm, laid back and nice. The resort staff are very concerned with you enjoying your vacation and they do just so much to make sure you are satisfied. It’s been wonderful of course. I miss my kids and my mom though. We’ve been texting and last night Tommy called Lelly and when I heard her voice I almost broke down. We chatted for a few minutes, it was good to talk to her.

Our flight isn’t until early afternoon and for that im grateful. Early morning flights coming home can suck as we have experienced. This week has truly been relaxing and refreshing. This was our first time in Aruba. We’ve talked often about returning to Hawaii where we went on our honeymoon but with that long flight and then jet lag plus the time we’d like to stay (about 10 days) it doesn’t seem reasonable at this time of our lives. After visiting Aruba; Aruba beats Hawaii. We had one morning of rain, the Caribbean ocean was so amazing, it only took us about 4.5 hours to get here, the people are incredible and the food was delicious. I did not have one bad meal all week. Oh and there’s a whole strip of shopping, from inexpensive tourist booths and shops then a mall with “mall stores” and then you had Cartier, Louis Vuitton and Prada boutiques. Amazing. Nope no complaints here.

It will be nice to go home and just “be” before I return to work in September. Summer session ended on the 12 of August, the 15 through the 18 Samantha and I were in Ocean Grove then Tommy and I took off on the 20th. Even though I’ve technically had 2 vacations I am ready to be home and get caught up with everything. Oh and I didn’t mention the suite we stayed at here in had a washer and dryer so no coming home to a major load of laundry. Yayyy! We both did a couple of loads of washing clothes, so we are packing mostly clean clothes. Amazing.

And We’re Taking Off!

After working the majority of the summer, me 10 hour days with after school program hours; and Tommy overtime. We are finally off to our much anticipated vacation to Aruba. We’ve never been there, heck we’ve never been outside the US unless you count a mini cruise to the Bahamas many years ago which I don’t. We are sitting on the plane in first class, also a first for us. We’ve always flown coach. Let me tell you this upgrade is so so cool. Water, breakfast, included is one checked bag, a blanket, head phones. And the leg room!… I could go on; I feel like the ultimate tourist just on the plane. There’s a family with half in first class and half in and they’re yelling back and forth to each other about the movies they’ve found on the screens. Oooookay that’s enough. Quiet time now. Our flight leaves at 7:45 am which means we were up at stupid dark o’clock this morning. It’s ok though, we like arriving to our destination early. We left the house super early to get to the airport and it’s a good thing we did. We had trouble getting our print out tag for checking my suitcase, that took way too long and thankfully an employee saw me having difficulty and helped me out. Yayyyy! We were on our way to the gate! When we entered the plane I thought we were in the wrong seats, I’m like this is NOT what we are used to. Sorry to go on but this is so so cool!

I even have a book to read! When I graduated from the Bachelors program I was so happy to not have any school work to do I went out and bought a fire tablet and purchased kindle unlimited from Amazon expecting to complete all this leisurely reading. Not. Instead, when Samantha and I went to the shore earlier this week I forgot the charger for the tablet and then ended up purchasing a paper book at one of the shops in the town we stayed at. I could have simply made note of the title and purchased it from Amazon but that would have made too much sense now.

Tommy has the window seat. I don’t like to see what’s going on. I’d rather sit here, write, read, pretend I’m doing anything else besides taking off on a plane. I’ll fly even though I’m not particularly a fan, but sometimes it’s totally necessary to get where you want to go in a timely manner. I’ve both driven and flown to Florida. I’ll take flying over driving anytime. The longest flight we’ve been on was on our honeymoon to Hawaii. It’s 10 hours I believe. We had a couple of layovers coming and going at that time so many years ago. Now I understand there’s direct flights to Hawaii, I’d rather do that than change planes or pick other people up.

The flight was uneventful and we’re all settled in in the villa. Life is good.

Good Bye Tompkins Ave

Those of us who worked the summer session left the building yesterday for the last time. Walking through the hallway, down the main staircase and out the main entrance. It was so bittersweet for sure. This is where I began my career that I didn’t know I would love so much as a District 75 nurse. This is where my son began school when he returned to Staten Island after residential school. Where I came to train after being hired by the city and when the principal was told I had a son who had attended this school said, “Oh, she’s a Hungerford mom, we want her.” This is where I met the staff that I really hit it off with. All sorts of positions too, paraprofessionals, teachers, social workers, you name it. I’ll never forget it took me 3 years to get a particular para to just say hello to me. She is tough, man. Then one day she brought in a student with a suspected fever and she swore this student was feverish. I didn’t say anything, took the temp and she was right! I gave her mad props for picking that up and ever since she’s said hello, and talked to me, joked with me. It felt good!

I’m excited to see the new school and start new beginnings, with most of the same staff of course. To see the new nursing suite that I’ll be working in, to be able to decorate a bit. We return to work September 6 and the students return on the 8th. It will definitely be a busy time for us to get things put away, set up, enter new orders in the computer. Have I mentioned I was told we will be getting new work computers? The one I’ve used for the past 5 years is older than dirt. No camera, no microphone, big honking tower on the side. To participate in a remote meeting I had to use my cell phone. Good times …. So yes new office equipment will be absolutely welcomed and appreciated.

Vacation Here I Come!

Friday, August 12 is the last day of summer session, I’m really happy about that. We return on September 6 and the students return September 8. It will be an exciting back to school time; my school is moving to a brand new building. We’ve been packing up the nursing office this summer and it’s been interesting what one finds when cleaning out cabinets and closets. There was a large box of medical supplies that the packaging had turned yellow as well as the item itself. They were obviously expired and unusable, so off to the trash they went. Those supplies go way back to before I was hired, I can only imagine how old they were. And why so much? There are some nurses who hoard supplies. I’m thinking my predecessors were such hoarders.

When I first began packing I thought we would have just a “few” boxes. Ha! I couldn’t have been more wrong. At last count there were 18 boxes and I’m sure there will be a few more before the end of the last day. I had to call parents to pick up their child’s medications. They, the parents understood we were moving and couldn’t leave meds with us until September so they came today and other parents will arrive tomorrow.

Enough about work, I’m itching for the hours to fly by! My day hours at school usually pass pretty quickly, it’s the after school program hours that get me, especially lately. I’m just antsy to begin my summer vacation time. I took the day off yesterday and Tommy, Lelly and I went to the beach. It was really nice, the weather was clear and sunny and hot. The sand became very hot later in the afternoon, the kind of hot that makes you want to hop from one foot to the other or just run across the beach right into the water. Tommy and I walked very, very quickly down to the water which was so refreshing. I have to say though, taking a day when you have 2 days left before you are off is like a tease. Plus I felt like I was playing catch up when I returned to work. Whatever. It’s over and done. And after today we have one day left !!

Going Backwards for a Minute

I was talking with a coworker today about the parents of the students we care for. We talked of the fact that many parents do not make arrangements for their child after they leave the school we work for. I remember Thomas’ first IEP meeting at my school years before I even dreamed I would work there. The school team asked Tommy and I what our plans were for Thomas in the future. I remember feeling very unprepared for that question and we didn’t know how to answer them. One person said, “I suggest you write down group home placement; this question is your plan for when Thomas leaves this school.” Tommy and I were in agreement that that seemed logical and agreed. In the meantime one of the pastors from our church who has an adult son with autism had phoned me to gently suggest we place Thomas on the waiting list for group home placement. Thomas was 12 years old. Pastor Larry said he knew how old Thomas was but time passes fast and the list was long. Tommy and I agreed and I called the appropriate agency to ensure he was placed on this list. It was probably one of the best things we did for Thomas at that time.

When I was telling this to my co worker she mentioned how hard it is for parents of special needs children to open up to social workers, case managers, IEP personnel, etc…. Life is hard enough caring for that child; you then had all those people up in your business asking a ton of questions just so you can access services for your child that he/she is entitled to. I mentioned that it took years for me to allow an outside worker in my house. But that when I did allow a direct service provider in to my home it was a great experience for not only Thomas but my girls as well. I hadn’t thought of my hesitance to allow an “outsider” in my home in years. And I also hadn’t thought about all the interviews and in depth, personal questions I answered and endured just to get the worker set up to work with my son. Our conversation took me back and I didn’t realize it until I returned to my office and sat at my desk and was “back” to my now reality.

This was the second conversation I had with someone I work with about Thomas. How decisions Tommy and I made years ago were not about us as his parents. They were decisions made for what would be best for Thomas and our other children as well. Every family situation is different. However one thing that is constant and universal is that none of us are going to live forever. And that reality stings and is scary. I do not expect our girls to take care of Thomas when Tommy and I are no longer here. That is one of the many reasons why Thomas is in a group home. Planning for the future when that future is not what you had originally planned for is difficult. Tommy and I were fortunate that we had people in our lives who had the incredible, caring nerve to tell us what we should do for our son for his future. We are also fortunate that we chose to listen to unsolicited, well meaning advice. That we didn’t balk and get upset and rebuke people who were really in our corner.

I find there are parents who refuse to discuss the mere thought of group home placement. As if the words “group home” are not to be mentioned at all because their child will “never” be in a group home. The same goes for day programs, Thomas likes to go to his program, it gives him a purpose. Yet when I mentioned which program he attends to another parent, that parent shut down the conversation because that program wasn’t what that parent wanted for their child. We all want the best for our children. Whether that child be special needs or a typical child. And there are limits to what some day programs can provide. On the other hand there are criteria that must be met for the student to attend certain day programs. There is no one size fits all.

I found the conversation with my co worker and the emotions it brought up to be a reminder that some experiences shape the future if you let them.

Sunday’s Starring Thomas

Thomas comes to our house every Sunday. It’s his schedule, every Sunday from about 1:30/2:00 to 6:00. He doesn’t like to come any other day but Sunday. I once had him over for dinner on a Monday evening when Sunday didn’t happen. I picked him up after work. It didn’t go well. He was more high maintenance than usual, very needy and I think we all couldn’t wait for him (Including Thomas) to go back to his house after dinner. After that, Thomas told me, “ no more Mondays mom…no more Mondays. Only Sundays.” No problem. And we’ve stuck to that schedule ever since.

Today after I picked him up, Thomas told us all about his Saturday. The staff took the residents to the Safari at Six Flags and then to eat. I thought that was really cool. I’ve never been to the Safari, I enjoyed hearing about the animals they saw.

Some Sundays are more challenging than others. Even though we only see Thomas once a week he still knows how to push buttons. And on more than one occasion the short time he was here seemed like forever. I love my son don’t get me wrong but he can be a handful. He has a memory like a freaking elephant and will hold nothing back to tell you his perception of things that have transpired in the past. Last week Thomas blamed me for calling an ambulance for him years ago. His memory that is usually so fail proof must have blocked out that he was out of control and violent and I had no choice but to call 911. I reminded him gently that I had to call an ambulance for him and why but he would’t hear it. I on the other hand refused to be blamed for defending myself. I dropped him off feeling a bit, I don’t know, not traumatized but more defensive I guess. I know what I did was the right thing to do at the time.

Today Thomas was a pleasure to be with. No deep reflections on the past from him or me defending my actions. Mostly talk about the Safari trip and telling us how much he enjoys his new clothes that he purchased with recent birthday gift cards. You know, I don’t dwell on the past with Thomas. Things happened that I’ll never forget, but I have forgiven him. I would never be in the place I am now without forgiveness.