Category Archives: DF

Summers with my Pop-Pop

Growing up I spent a lot of time with my mother’s father, I called him pop-pop. He was almost 76 years old when I was born, yet my childhood memories are not of an old man. He saw a doctor for the first time in his life at age 86, an eye doctor, who told him he had to quit working.

My pop-pop was a landscaper for some of the biggest estates in Chestnut Hill, a really nice area of Philadelphia. The Cliveden estate was my favorite because I could visit there often and the maid would bring me iced tea with a mint leaf which felt ever so grown up to 8-9 year old me!

I was secretly glad when he stopped working. That’s when the fun kicked in to high gear. I loved adventures and we had them!

We would take the 23 trolley then a bus to the Italian market (pop-pop was born in Calabria) where the sounds and the smells were amazing, beat only by the flavors!! Everyone handed out samples, and I gobbled them up! Cheese, salami, prosciutto, delicious tidbits.

Finally weighed down with our packages we’d hop back on the bus, then the 23 trolley back home. There, he’d make a yummy dinner for us, then we’d sit in the front room and watch Lawrence Welk. Pop-pop got hooked on the show after he had Elvis Presley on. He liked the Beatles too!

Some days we spent in the garden, where he taught me all his rules for planting. It was a very small patch of ground, less than 100 sq ft but it was very productive. I’d pull tomatoes off the vine and eat them like apples they were so sweet. He planted and harvested by the moons and I wish I’d written it all down!

He also had a fig tree I was very sorry to see go. My first solid food was figs. Mom caught pop-pop feeding it to me off his fingertips when I was 6 weeks old. She was so mad, but he didn’t care.

It was hard when he finally had to give up his house and come live with us. After a couple years he went into a nursing home.

He lived a simple but honest life, and passed in his sleep at the age of 100. It’s been 25 years but I still think of him often.

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Autism in a marriage

I see so many times on social media and forums where someone asks if people with autism can live a married life. It most certainly can be done, but it takes a lot of work and understanding by both parties.

How can I know this for sure? My husband of 18 years has HFA, or high functioning autism. We did not find this out until about 11 years into our marriage, and it actually saved it. Our marriage was heading to the toilet, I was buying a house and my husband was making plans to move.

In this same time period I was struggling to figure out what was going on with our son. Finding out he had Aspergers turned a light bulb on. I was able to piece together what I read about Aspergers and saw glimmers of my husband, who was later found to have HFA.

Now I wanted to work on saving our marriage. I started to learn all the things I needed to do a little differently for our son and for my husband.

I stopped using metaphors and cliches and worked to make sure my words could be taken literally, because they would. Turns out actions are treated the same way! I thought my husband had lost interest, I even climbed in bed naked one night to no avail. Much later I learned he just thought I was hot. As in excessively warm. ๐Ÿ˜‰

Communication has been the key. Sometimes its hard but he and I will talk until he can finally express what’s bothering him. I work hard at being very straightforward and try not to get frustrated when things don’t go right.

Our household is nothing if not interesting!

Good times

Growing up my dad was a pretty funny guy, who sacrificed and did a lot for me.

He had his one-liners he’d repeat, like when reading the paper he’d comment how interesting that everyone died in alphabetical order (I’ve later learned not all papers list them this way!). Going past a cemetery he’d say people are dying to get in there!

He was an insurance executive and frequently he and mom would go out to PR clientele. When I was young I got left home with a sitter. I asked what they ate there (I was no more than 9) and dad said “whore’s ovaries”! I no more knew what a whore was than an ovary, but I knew it was funny and it was to be kept between us. As you can imagine I can’t ever view hors d’oeuvres the same way ever again!!

When I was young we always rented a place in Beach Haven, NJ during the 3rd week of June. The only downfall was that’s generally a rainy time and it’s early in the season, Beach Haven being a northern beach point.

I don’t remember this at all, but apparently the water generally ran 55-60 degrees, past brisk and downright cold. I was a nut for the water and would spend every waking minute in it if I could. Unfortunately dad had to be in grabbing distance at all times because he would never leave me alone. Not until I got to be 8 or 9, when while I body surfed the small waves, he sat in the surf, ever ready to run to my rescue (which I never needed!).

He had his flaws, but my dad would move mountains for me.

One of his flaws was alcoholism. The first (and last) car accident he ever had while drunk banged him up and scared him. I was sitting on the front porch one day with him while he was home recuperating. He had a broken nose, several broken ribs, and banged up his right knee and leg. We’re enjoying the spring day when suddenly he sneezed!! As he sneezed he bent over and simultaneously crossed his legs. He came out of that sneeze yelling oh shit with blood coming out of his nose. He had hurt everything that was damaged!! We always laughed about it later but I think the neighbors scurried away that day!!

So my dad worked about an hour’s drive from home. A couple times a month mom would drive to the mall with me and dad would meet us there. We’d have dinner inside then come out and leave. If several people were exiting at the same time my parents would start yelling at each other across the parking lot because they were never parked close to each other. It was a game, to see who went on their way and who was nosy. Mom would say “leave me alone, I don’t know you from Adam” and dad would yell “funny that’s not what Adam says” – throwing barbs. Well one guy didn’t think it was funny, he thought it was real. And he was an off-duty cop!! Pretty soon I was crying and mom was trying to explain they’ve been married 20 years, bla bla bla.

I have to say once it was over, I was laughing again!

We went to a farmers market one time and mom asked dad to weigh a watermelon. He picks one up, it rolls right back in his arms. He plops it back in the weighing basket, it falls over the other side and explodes on the floor. We had no watermelon!

Dad was painting the living room one night (our family never started a project before 3 pm!) so he had his old ladder with a lamp on the big top step/shelf and mom’s bedroom clock radio on the bottom step both plugged in to the same outlet.

He got ready to paint another wall, but he was rather disorganized. He took the lamp down and set it on the floor. Then he moved some painting stuff. He then turns around and swings the ladder over to a new spot. Moms alarm clock flies off and lands in a million pieces. Not sure she ever forgave him!

My dad like most men of his era would never ask for directions. We went out for a regular Sunday drive, and somehow got off the beaten path and got lost. Finally it’s well past dark and my mom says “So John, do you have the vaguest notion where we are?” and dad says “Yes Helen, I know exactly where we are!”. She says where then, dad says “We are at the precise geographic middle of nowhere”.

After that trip mom started packing crackers and sweaters!

We were riding in a Toyota rental car one time, dads car he got with his job was in the shop. We never drove a foreign car before. We finish dinner and by the time we leave the restaurant it’s dark out so dad figures out the headlights. But they are on high beam. There’s no button on the floor to dim them, no book in the glove box to show how. Driving home we get lots of high beams flashed at us. Then we get flashing red and blue lights!! The cop comes over and dad explains the situation. The cop gets in the car and 5 minutes later says drive straight home and doesn’t give us a ticket. My dad always said it was the cop kept smiling at me. As I got older I found that more disturbing than endearing!!

So yeah, when he was sober my dad could be a lot of fun ๐Ÿ˜‰

Time is Flying!

Our son Andrew is 17. He is on the precipice of life. One year of high school left, then the world lay out before him.

He’s always been a determined kid. Never stubborn, just determined. Whether it was learning how to ride a two-wheeler ~ which he did in under an hour ~ or learning how to tie sneakers, which took considerably longer, once he put his mind to it he accomplished it.

The years in elementary school were sometimes tough. When we finally got the Aspergers diagnosis it was actually a relief.

The transition to middle school was easy for him. He joined the band, playing tuba starting in 6th grade.

Middle school was a fast three years and suddenly he’s a high schooler! Now in the marching band still playing the tuba.

Along the way he developed a great sense of humor and he and I banter back and forth often. Sometimes it just takes one word and we’re off! Tonight that word was tootsie roll ๐Ÿ˜‰

Now he has taken the SAT, he has his plan set for what he wants to do with his life, even has his first choice college picked out. He works part-time plus a full load at school and he builds computer games on the side. I don’t know what side!!

Our time together is becoming less and less as he gets busier with activities and finds time to spend with his friends. It is how it is supposed to be, yet it is still bittersweet.

His first choice college is 300 miles away so next year he may be moving out which will be hard.

I admire him greatly. I admire his hard work and determination in gaining control of some detrimental aspects of his Aspergers. I admire his focus and responsibility, how he’s never broken my trust in him in all these years.

He is on his way to doing great things.

A little levity

The following is a true story. Even I can laugh now ๐Ÿ˜‰

Our family is from Pennsylvania and we used to live in Bucks County. They had a big waterpark there called Sesame Place, based on all the Sesame Street characters.

Our son was receiving early intervention services from the Intermediate Unit there, and every year they gave all the families a set of 4 passes for a day at the park before the official opening of the season. The year our son was 3 we went but could do very little because it was a cold, misty day. Sesame Place felt bad and gave us all a free day in season which is where this starts.

It was my husband and I, our 3 year old son, and my 16 year old daughter. The kids had fun on lots of climbing equipment, mesh bridges, etc. As it got hot we decided to try some water features.

Our son wanted to go down the super long water slide that is a giant tube, but this one lacked a cover. We decided hubby would stay with the stroller and cooler. So I had my daughter first, son second, then me.

As we are climbing this incredibly high platform the speakers bellow out “do not ride if you are pregnant, have back problems, have heart problems, or if you are obese”. Ok so I was somewhat overweight but people way bigger than me were climbing up.

I get up there and when it’s my turn to sit down the water feels like its really pounding my back. I should point out here I was wearing my 3 year old hot pink maternity bathing suit that looked good on a tan, frightening on pasty indoor skin!

Finally I get the go ahead to push off. I *fly* down that shoot, seems fast but it’s my first time. As I bank into the first turn, a left, I feel my body being pushed up by the water, my butt is going over the top of the ride and I see tree branches coming at me. Then I see my life flash before my eyes! I’m going to fly off!! Luckily I come back down just in time to SPEED past my son.

The next thing I hear is “Oh shit!” which I later found out was the guy at the bottom who helps you land. All he saw was a hot pink fireball blast by him!

I landed, butt first, about halfway across the pool at the bottom. I hit so hard my sunglasses landed about 100 yards away in a totally separate attraction ๐Ÿ˜‰

I finally manage to climb out and as we are walking back my son says “again mommy?” and I said no, never again!!

I never wore that bathing suit again and have since lost a lot of weight, but just seeing similar rides still terrifies me!

I’m glad we live here…

No my account hasn’t been hacked, and I do still hate Lubbock with every fiber of my being, for me. I hate that shopping is so limited, that it’s a two hour ride just to get somewhere else just like here, and five hours to civilization.

I hate that I have to buy my canned tomatoes by the case off the Internet. I hate that we have a so-called “international” airport but family from Philadelphia must fly puddle jumpers to and from DFW to get to Lubbock,

I hate small town life.

But, everything I hate about this place for me is nothing compared to what I love about it for my kids.

We’ve been here since my 11th grader started kindergarten and his baby sister was a baby. Now she’s in 7th grade.

By and large I’ve been happy with the schools. They’ve done right by my kids, helped when it was needed. The parts of the curriculum I find lacking I supplement myself.

I like the experiences they are getting, that closeness and camaraderie they feel. The memories they have that will last a lifetime.

Small town Christmas parades, 4th of July picnics and vacations you are happy to come home from.

In a very short time our son will be done high school and off to college, expanding his horizons. I can’t wait for him to see what’s out there, beyond these little houses with their little fences.

Four years later our daughter will be taking that path, heading where her interests take her.

I may leave, or I may stay. Only time will tell.

What is luck?

I know that I am lucky in many ways. I am lucky to have met and married DH, he has been like a rock, stepping in to help me with anything I needed.

I am lucky to have my two youngest at home, they do so much for me, mostly just by being there!

I am lucky to have kept my house, through six months of neither of us working and the last year of DH being unemployed.

But when people who don’t know me well, or at all, tell me I’m lucky it’s very odd.

I used to run into a guy in the elevator occasionally who worked in my building for another company. He would often tell me I’m so lucky because I don’t have to walk all day, I have my powerchair. Oh yeah, lucky me.

Finally one day he stepped in the elevator and I said “you’re so lucky” and he asked why. I said you can get stuff from a top or bottom shelf without needing help, you don’t have to worry if there’s a ramp so you can get in where you’re going, and you don’t get decubitus ulcers from sitting in one spot all day. I never saw him again. Maybe he took the stairs, it was only three stories!

I’ve had a lot of older people lean on the back if my chair like it’s a park bench. I tell them to get off and they say I’m so lucky because I’m always taking a break. Really?! I worked two years sitting in that chair. And I will quite likely not live to be 60+, even 50+ is a shaky maybe.

Odds are good I will never know what it’s like for all my kids to be grown. Right now I have my sights set on seeing Mr16 graduate high school. Then Ms12 will start high school.

So yeah, I’m lucky. Just not how you think.

A day in the life…

During the week my day starts around 7:15 am, getting the kiddies going out the door by 7:45 am. Then I take 100 units of humilin insulin, and sit and watch tv or play on the iPod. DH is sleeping.

I nod off for a short nap until 11 am. Then DH gets me breakfast and medicine (another 100 units of humilin, 60 of humilog, metformin, B12 and calcium pills).

If it’s Tuesday I’m off to the shower. I can still manage myself until I’m out. Grab the oxygen, then start to get ready. DH combs my hair, shaves my legs, and helps me get my clothes on.

After shopping we get home and I am ripped! DH gets me a drink and I sit, staying in my recliner for all but the occasional potty break.

DD comes home from school and we go over her day, homework, etc.

Another 100 units of humilin after dinner and another B12.

DS comes home after band practice. We catch up for about 5 mins then he has dinner and heads to his room to do homework and/or game development.

DH and I watch a little tv, sometimes together. Around 10:00 pm he usually makes some popcorn. He goes to bed between midnight and 1 am. I am usually up until 3 am or later.

Before bed I take 100 units of humilin, 80 units humilog, B12, calcium, metformin, and 2000 units Vit D.

During the course of the day, DH will have gotten me numerous drinks in between doing laundry, making dinner, etc.

My entire day is spent tethered to an oxygen machine of some kind. Even with that my walking distance is very limited.

I can’t do my hair or shave my legs (or pretty soon brush my teeth!) due to the pain in both hands from osteoarthritis. It is worsening quickly. I have to be very careful with NSAIDs bc I have congestive heart failure.

I spend most days battling fatigue, swelling, and pain. When the ascites is bad I look 9 months pregnant and feel it!

My kids and husband do everything they can to make me feel included, but often if it involves leaving the house I miss it.

The couponing makes me feel useful. When we get a bunch of stuff we need for free I feel good about it. Despite the fact that I can’t actually cut out the coupons, DD does ๐Ÿ˜‰ But I do figure out the deals and such – stores don’t just hand stuff over LOL

My children I believe have learned empathy, and how to refill water on an oxygen machine!! Back when DH was working, DS sacrificed sleep to come out and unhook my infusions when I was recovering from sepsis. He knows how to do a hep wash now!

This is my life and I don’t see it changing soon.

PS. Did I mention I Twitter, a lot?!

Return to school

School starts in just 3 weeks in this part of the country. Right after the shadows start to get longer and the evenings get slightly cooler.

I will admit I like when school starts, because after about 12 weeks of summer we all get on one another’s last nerve! The kids wake up nothing but hateful to one another and by dinner I’m ready for them to be in bed.

The return of school has some downsides. There’s the 10pm Sunday night rush for poster board (which I now keep on hand), and the science projects…I especially enjoyed the catapult we had to build over Thanksgiving break. We ended up with no marshmallows for the sweet potatoes and a fat dachshund!

If there are any teachers reading this – that teacher got no Christmas gift. Homework, especially projects requiring my help, should not be assigned on holidays!

It is also unnervingly quiet when the kids are at school. The house is so silent it is almost unbearable.

The final straw is mornings!! I am religiously opposed to them but must get up with the kids every day. It is pure torture, moreso now that both kids leave at the same time, sharing a bathroom. I set up a schedule but no one follows it. I think they prefer to fight it out ๐Ÿ˜‰

Let’s not forget PTA meetings, ugh! We do not want to listen while you praise Donna on her cupcakes and Lisa on the phone chain. Why? Because every week you ask US, the rest of the parents, to send in or do something you later take credit for! I will not join, and I’d rather just buy my kids class a pizza party than deal with you. Blackmail is illegal!

Speaking of blackmail, teachers who offer A’s to students who bring in X (paper towels, batteries, baby wipes) for your personal consumption should be fired! I will be after you this year…

This year should be interesting. One in 7th and one in 11th. Terrifying!

My father – equal time and all that…

My father was one of 9 children of an occasionally employed and usually drunk Irish Catholic father from County Donegal. There have been many rumors about his mother’s pedigree, the most persistent being she was a German Jew whom his father married to save from certain death. All details of their meeting are sketchy but still it lives on.

My dad went to Catholic school and was an altar boy. He was drafted not long out of high school but was lucky to serve his time during the Korean conflict in Germany as a communications specialist.

My earliest memories of my dad were when I was maybe 5 or 6. He would make me breakfast, always just the way I wanted it.

By the time I was 10 or so I curried favor with him by getting and opening his beers, for which I got to have the first sip.

In the ensuing years every bartender in 3 counties got to know me well as my mom would send me in to drag him home.

My dad was mostly a calm, happy drunk who never missed a day of work as a manager at AIG. My mother was a cranky, miserable teetotaler who physically beat on my dad – quite a few times I called the police. I was too young to explain or even be heard, I wanted *her* taken away but they always took him.

I had probably an average childhood for my generation, but I knew my father would always have my back, and he did.

Eventually he got sober – I guess waking up in a coat closet will do that to you – and I got to see the real man. He was awesome, so funny, would give you the moon if he could.

He moved on 15 years ago this July and I still miss him every single day.