Spencer

Spencer Douglas Hughes was born 10 years ago today. Now, don't get uppity when I say this but, we thought we wanted a girl. At this point, we already had 2 boys. My mother had passed away in 1997 and a girl sounded nice. We don't have a lot of room, or a lot of money and having a third child felt like a luxury. So we figured that we should improve our odds.

I won't bore you with details (It's easy to find it on the internet, if you're interested) of the Shettles Method, but this is the general idea.

There are 2 kinds of sperm. X carriers (girls) and Y carriers (boys). The X sperm have thicker heads and can survive longer after ejaculation than the Y sperm. Y sperm while smaller, than the X sperm are faster swimmers and travel into the woman faster than the X sperm. Basically, if you want a girl, time intercourse fore 2 -3 days before ovulation. This way, by the time the egg is relased, amost of the Y sperm will have died off. If you are trying for a boy, you want to time intercourse for the day of ovulation so the Y sperm will have the best chance of swimming fast where he needs to go.

It sounded simple enough.To get ready for this I started charting my ovulation. I took my temperature every morning and plotted it. After 5 months (and not getting pregnant) I compared my ovulation chart to the samples in the book. Something was not right. Instead of the normal dips and peaks, mine looked like straight line. I showed the charts to my doctor.

"Hmmmm" he said "These don't look right. Maybe you ovulated this month, but all these others, it's obvious that you didn't"

"That's weird, I always get a period, I would think that if I wasn't ovulating, I wouldn't even get a period"

he said"It seems you have just enough hormones to mensruate, but whatever "push" is needed to realease the egg, doesn't happen"

So he suggested I try Clomid. It is a mild fertility drug. It was NOT covered on my insurance. The first dosage was something like 25 mg and 6 tablets cost $ 65.00. I took the Clomid and nothing happened. The next month, my doctor increased the miligrams to 50. This time the prescription cost $95.00.

Then it was September 11th, 2001

The next day there were all these reports on the news and radio of people going to donate blood. It felt like it was the only thing anyone could do. The thought was "When they start pulling survivors out of the wreckage, they're going to need blood, right ?"

I am O negative and felt that this was the least I could do.On September 12, I made an appointment at Stony Brook for a blood donation. They were so busy that day they told me to come back in a week. By the time of my appointment, it had become clear that there were hardly any survivors but the blood banks could still use it. So I went anyway.

I filled out the form. One spot asks you "Are you currently taking any prescription drugs ?"

so I filled in "Yes, Clomid" the nurse asked what that was for, so I told her I was trying to get pregnant.I had taken a pregnancy test that morning and it was negative.

"If you are actively trying to get pregnant, you shouldn't give blood. You want your blood supply to be good, to develop a nice placenta"

"Once you get pregnant, you can come back 6 months after you deliver and we'll take your blood then"

So I didn't donate blood, It was a VERY good thing.

2 days later I was supposed to get my period. I was waiting for it 'cause the doctor was gonna do another test on me, and it needed to be done on the 3rd day of my period. I remember thinking

"I wish it would get here already"

At this point I should say that I had been taking a prenganancy test every month. I got really used to seeing the " ll" which means negative.So imagine my surprise when on September 26, 2001 I did one that ended up like this :

l ll

I had to look at the box to remind myself that that meant positive !!

In the end, the journey of trying for a girl wasn't important to us anymore. If I hadn't been charting my ovulation, I never would have been alerted to my problem. I truly didn't care anymore what it was, I was finally pregnant and very happy.

Compared to many others this is not a complicated effort, nor was it filled with disappointment.It was something I wasn't expecting. My sympathies go out to anyone who has ever had a hard time making a baby.As a woman, I am most delighted that we have this wonderful gift.

The pregnancy itself was fairly easy. Again, I gained about 60 pounds. This time the weight affected my blood pressure. Towards the end of my preganacy I was constantly out of breath and was at the Dr. Office every 3 days for monitoring.The baby was due June 2, 2002. At this point I had had 2 babies. One was late (Teddy) and one had been 3 days early (Patrick).I had no idea what to expect this time around.

June 2nd arrived and no baby.My blood pressure was getting worse and I was HUGE !!

A week later on June 10th, I had my last appointment.

"I think we should induce you on Thursday"

"I don't want to"

"IF your blood pressure wasn't an issue I would let you go longer, but I don't want to take the chance"

"OK, I actually wouldn't mind being done !" I remember saying

So I went grocery shopping. I went to K-Mart. I came home and found a message on my answering machine from my friend Melissa.

"It's so hot today (It was about 90 degrees) why don't you and the kids come over after school and swim in the pool and we'll have a nice BBQ"

That sounded great, so I took everyone over. I would just lay my head back in the pool and float, it was such a great relief to feel weightless for a while.

We had some enormous clams and some yummy fruit and relaxed. I got home around 9:00 and put the boys in bed. Then I went to bed. Don was working late, and I was totally asleep when he got home I didn't even hear him come in.

Around 4:00 am I woke up with a weird pain.I rolled back over. It happened again.I sat upright in bed and waited. It happened again !

I was finally in labor, 10 days late.

I called my doctor and he told me that Vera, the midwife would meet me at the hospital. I was psyched. I had never had a midwife.

Vera was the best. I could do anything I wanted. There was a shower (no tub though, bummer!) and that felt good.I had gone to the accupuncturist a few days before and he had shown Don and I some pressure points we could use to help with the pain. Using these pressure points with Lamaze breathing and focus techniques, I had no drugs at all, this time around.

Everything was going great. It was finally time to push. My water had still not broken, so Vera broke it. She had the bed put all the way up, like I was sitting in a chair, and she was right below me. It was great ! Gravity was my friend and it was so much easier to push because I was sitting upright.

Then it started to get really hard. This baby was big !The umbilical cord had gotten wrapped around it's head and Vera had to fix that. Finally the head was out.

Next we had to deliver the shoulders and that was REALLY difficult. That's when Vera told me the baby looked pretty big.

"Give me your hands" Vera said

I gave her my hands and she grabbed them and said,

"You're going to help me deliver this baby !"

I gulped, I'm not qualified, I thought

"OK" is what I said.

Sure enough, she took my hands and put them in the baby's armpits.

"On the next push, you're going to pull the baby towards your chest so I can manouver the hips out, OK ?"

"ummm...OK" I said nervously

The next thing I knew, I pushed, I pulled and then there was a baby coming out of me, all warm and gooey and he landed right on my chest, just like Vera said.

As I was pulling him out I saw Don looking at the baby from behind and he said:

"It's a BOY !"

and I said:

"Of course it is, why would it be anything else ?" and we all laughed.

I was so happy. He was finally here. The baby I thought might not happen was finally here.There was no disappointment, only JOY that we had a new baby to love.

Vera told me that was the most fun she'd had delivering a baby in a long time. She noticed how well Don and I worked together and trusted eachother.

"It was almost fun for me too" I said.I felt great. Because I hadn't had any drugs at all, I felt really good. I was just starving !

Later as I was resting, I hear Vera on the phone reporting in to the Dr. Office.

"I was really worried there for a minute that the baby wsn't going to deliver all the way, I really thought he was gonna get stuck and we would have to switch to the OR"

I had no idea that the situation was that serious. she never let on to me. I thank her for that. Only because we all remained calm and I follwed instructions (unlike with Teddy) did we get the result we wanted.

in the end Spencer Douglas Hughes weighed in at 8 lbs. 5ozs. and was 19 inches long. He looked like a meatball !

He was not very pretty, however after his battle to get out. He had little bruises and blisters all over his face and he had broken blood vessels in each eye. He then developed jaundice and turned yellow. Combined with his bruises and things, he looked like rainbow.

He needed light therapy for his jaundice and I tried to get another day in the hospital, but the insurance company said I could only stay in the hospital if I paid for it. So we took him home and the next day I had to take him back to the haspital. I spent the whole day in the ICU with him and then, that night I had to go home and leave him.

Of course, this was the night my milk came in. I was dying ! I was so full of milk, and my baby was in the hospital. I found my old breast pump in the attic. Phew what a relief. As soon as it was 6:00 am I called my friend, Laura and she took me back to the hospital to be with Spencer, while Don stayed with Teddy and Patrick.

I sat there in the ICU and nursed that baby for about an hour. I was finally at peace.His bilirubin levels had finally gone down enough that we could take him home for real. 4 days had passed since Spencer was born and you know what day it was that we finally got to take him home ?

It was Father's Day.

Theodore

How to begin ?

First off, It was like a dream and a movie and a life changing event that I never could have anticipated.In March of 1990 I was at Paris, New York at the upstairs bar, talking to my friend Deridre. Don came up the stairs and came over to talk to Deidre. I noticed him right away. He had a great smile and a vintage pork-pie hat. Deidre introduced us.

" I like your hat" I said

"I got it in Montana" he said

"I never met someone who went to Montana" I said

Don laughed and I liked him right away.

At that time I was living at home and taking a class to finish my degree at F.I.T. I have just been viciously dumped by someone (who shall remain nameless) and I was NOT intersted in a relationship.I would see Don at Paris and Spyze and we would chit chat. We didn't have our first official date until August of 1990. Don was so nice and funny. He had a job, he had a car, he owned his own business and he had his own house........This was no boy. He was a grown up. It was a nice change.

Things moved pretty fast after that. This was it, the real thing and we both knew it. He asked me to marry him.

"I don't know when" he said.

"We'll wait and see, there's plenty of time" I said

Then there was this rainy night. I was at his house and it was 2:00 am and I didn't want to drive home in the pouring rain. So I stayed overnight.

Two weeks later, I missed my period.

"That's weird" I thought.

I told Don

"I'm not ready. We're not married, I have to tell my parents........I'm scared" I said

"If you get something, you're ready. Whether you think so or not" He said.

So I had to tell my parents that I thought I was pregnant.That was a nerve shattering day.I didn't want them to be mad at me. I didn't want to be judged. It was really hard to get the words out. I needed a test and Don and I were going to get married right away, whether I was pregnant or not.

"How did this happen ? my Dad asked and my Mom let out a nervous giggle

"Well Dad, There's this cabbage patch on the way home from Spyze.........."

We all laughed and waited.I had the test done and on Septmber 17, 1990 I called Don and told him I was pregnant. He was happy and I was happy, but we were also nervous. It wasn't easy to tell people. We hadn't been together that long. We got a wide range of reactions from everyone.Most of it was not supportive.It was really hard to enjoy it, at first.

We were married on December 29, 1990 at JT Carrington's ( now La Casa Cafe) at Crabmeadow Beach.That night, after the wedding, we had dinner at Skorpio's in Huntington with a bunch of friends that couldn't come to the wedding. then we all went to Spyze.

The next thing I know, I'm married. It was hard to adjust. I think I'm still adjusting.

As far as being pregnant, it was pretty easy. Being pregnant at 22/23 is LOT easier than being pregnant at 39 (like with Charlotte). I hardly had any morning sickness and I felt pretty good.I gained 50 pounds, but otherwise.......

I liked being pregnant, It was so exciting ! Sonograms and hearing the baby's heartbeat for the first time.We had to pick some names.I had always liked Ian and Shannon. Don didn't like either of those.

"My family's names are useless. We've got Burton and Bertha and Buela and Gladys and Mildred . My cousin Evelyn (after our Grandma) got the only good name" I said

so we looked through the bible first, nothing we both liked. Then we started going through President's names.

"George, NO......Abraham, NO.......Theodore, hmmmmmmmm"

We both liked it. It means "Gift from God" and that sealed the deal.The girl's name was harder. We liked Emily and Corinne but neither one had that "YES !" feeling. We went through family names again. Don mentioned that his grandmother's name was Charlotte.

"Ooooh, I like that !" I said

"How about a middle name ?" he asked

"My Grandmother's name was Pauline, how about that ?"

"That sounds good !" he said

We didn't want to find out what we were having. We both wanted it to be a surprise.As time went on though, I kept thinking and feeling that it was going to be a boy.As the only girl in my family I did eventually want a bunch of girls, but I wanted to have a boy first.We started saying "He" and "Teddy"and we were convinced it was going to be a boy.

My due date was May 23, 1991. On that day I had to drive out to the Calverton Animal Hospital to get our kitten fixed. If you've ever been out there you know that there's this HUGE chunk of old Grummann property. You can't drive THROUGH it, you have to go around it. I got so lost. I started having contractions.It turned out to be nothing, and I finally found the Animal Hospital, but the idea of labor started to scare me.

May 27, 1990 I did super grocery shopping. 2 carts full, just to be prepared. that night we went to Friendly's for dinner and ice cream for dessert.

Tuesday morning May 28, 1991 at 8:00 am I woke up with a weird pain. I rolled over and tried to go back to sleep.10 minutes later, same thing. I couldn't get comfy, it was sooo annoying. I rolled over again and tried to back to sleep.10 minutes later, the pain came back. then it started to dawn on me........

Maybe I'm in labor ? so I called my mom.

"Were you dilated at your last office visit, Have you seen any blood ?"

"2 centimeters, but no blood" I said. I told her I was going to the bathroom and that I would call her back. When I got up from the toilet there was blood. By this time it was 9:00 am and my doctors office had just opened. I called my doctor next.

"Come to the office and we'll check you out"

So off we went.They checked me out. I was at 3 1/2 cm.They told me I had probably been contracting all night and slept through it.

"I'm gonna send you to the hospital. Stop at home do what you need to do, but don't take too long"

"OK !" We said

By the time we got all checked in and settled in at St. Charles Hospital it was around 12:00 noon.We used our Lamaze breathing and all was going smoothly. Around 4:00 the pain was getting really bad.I didn't want an epidural (needle-phobia) so I just got some IV pain medication.It took the edge off, but it was still pretty painful.Around this time my contractions were right on top of eachother. Cinstantly going from one into the next. But I wasn't dilating . I had stalled at 6 1/2 cm. The baby had dropped, and was low, but I wasn't allowed to push.

"That's it, I need an epidural !" I said

"Why don't you wait a little longer. Let's try some pytocin, to try to move things along. At this rate you could be here for another 12 hours..."

"OK" I said

They gave me the Pytocin, through the IV and then WHAMMO ! Everything went so fast after that. All of a sudden I was at 8, 9, 10 cm.

NOTE: THIS WAS 19 YEARS AGO. BIRTHING ROOMS WERE NOT COMMON. ST. CHARLES HAD 1 OF THEM AND IT WAS ALREADY TAKEN.IN THE OLD DAYS YOU WOULD LABOR IN THE LABOR ROOM AND THEN THEY WHEELED YOU ACROSS THE HALL AND YOU DELIVERED IN THE DELIVERY ROOM

"I want an epidural !!" I screamed

"It's too late" they said. Just as well, I didn't REALLY want it, I just needed to get this baby out of me !

They finally told me that it was safe to push, I was finally ready at 10cm. I was still in the labor room.

"Whoa, the baby's crowning !" they shouted and they wheeled me across the hallway to the delivery room.My Doctor had literally just finished helping Don tie on his mask amd then there I was.

I must have pushed about 3 times and all was going great. Then the doc told me NOT to push becuase the baby's arm was over it's head and he wanted to move it first. I didn't listen and I pushed anyway. BAD idea. The baby's arm popped out and cut me and I nended up needing some stitches.

And then all of a sudden, he was here. I heard him screaming and saw him kicking and he looked HUGE !

"It's a Boy !!" the Doc said

"7 pounds 12 ounces, 21 inches long" the Nurse said

"I need to pee" I said. My bladder had been full for so long, I thought I was gonna explode.

They washed him off and wrapped him and brought him over to us. He was beautiful. A perfect round head and big, blue eyes. 10 fingers, 10 toes, and a good set of lungs. He even got a 10 on his APGAR. I didn't know it then, but labor was the easiest part of having a baby.I had hardly any baby skills. I second guessed myself all the time. Struggling to breastfeed and then switching to the bottle, no sleep, teething, potty training, terrible two's and then Autism.

I didn't know any of that then. At that moment I only knew that this baby was ours. He was here because we wanted him, because we listened to our hearts and trusted our feelings.

Happy Birthday Teddy, we love you very much.

The Day I Learned About Autism

I don't remeber the exact date, but it was sometime in the spring of 1996. Teddy had just turned 5 years old.

Theodore Donald Hughes was born on May 28, 1991. He came into the world kicking and screaming and weighed in at a healthy 7 pounds 12 ounces. When the Doc handed him to me I couldn't believe that I had created something so adorable, so vibrant, so....BIG !

I had done babysitting but I was the youngest in the family and there had never been a baby in my house. We struggled thru jaundice and breastfeeding, 2am feedings and the decision to switch him to the bottle. OH, the guilt !

He grew and grew.I had wanted a baby of my own for so long I couldn't resist hugging and cuddling and snuggling my baby all the time.We loved him so much.

2 years went by. He walked at 14 months, he could do puzzles and build trains and color. At his 2 year old check-up the Doc asked me about his vocabulary. "How many words does he have ?" I thought about it. I said "I guess about 10" "That's not really where he should be, let's get his hearing checked"

That was the first day I ever suspected something might be wrong.We got the ball rolling. I called social services and arranged for a bunch of evaluations. Physically everything was ok. By the time he was almost 3 we decided to enroll him in a special education pre-school. He got speech services right away and his speech improved dramatically. At the age of 2 and a 1/2 he was going on a school bus !

In special ed it's all about the "classification" what the dr's and teachers have determined is the basic "problem" . Ted went through pre-school being classified as a child with a speech delay.When the time came for Kindergarten, a new classification was needed. A new set of evaluations were also needed. I tookTeddy and my giant, pregnant self over to Stony Brook Univesity for the evaluations. Driving to Stony Brook that spring afternoon for the results,We had no idea what to expect.

We sat down at one of those kiddie sized tables while the psychologist (who had a regular sized chair) gave us the results. "Your son has Pervasive Developmental Disorder. It is a form of Autism, it means that Teddy doesn't communicate with children his own age. He is more interested in older or younger people, than his own peers. He has no desire to to play with other children, he can't figure out their social cues. he doesn't notice subtle things like eye movements and hand gestures. These hings will get harder for him to interpret as he gets older.We suggest a small class and lot's of idividual attention. Speech therapy and small group play is important, too"

They explained abolut the Autism spectrum. how someone can some parts of Autism and not be totally "Autistic".I had a vague idea of autism. I had seen "Rain Man", but Teddy wasn't really like that. Suddenly it all started to make sense. Teddy used to constantly play the same game over and over.He would repeat lines from movies, and repeat a sentence he had already said.He could play for hours with the same toy or watch the same movie 3 times (or more) in a row. His favorite thing to do was roll a train or Matchbox car down someone's leg. He could do that over and over and NEVER get bored of it. Driving home that day, we kept waiting to feel disappointed, lost confused.We didn't. Finally, at last, we knew what was wrong with our boy. There were people out there who could help him. We bit the bullet and sent him off to Special -Ed Kindergarten in Suffolk county BOCES.

He thrived there. He made friends. He started to talk all the time. He was fun and funny and animated. He learned how to read and write his name. He went to a special program arranged by the Genesis-Eden II School in Plainview. ABA is short for "Applied Behavior Analysis" It is a treatment plan to help autistic children break the pattern of self stimulation. "Stimming" is something that many autistics do. It is repetitive motion that they do for either comfort (most common) or just to entertain themselves. They get very little stimulation from other people. Hugs, contact, play are not interesting to them They would rather entertain themselves. Teddy's favorite stimming behavior was to wave his hands to imitate a train going down the tracks. he would also make train sounds (loudly) and repeat lines from movies out of the blue. The Gemini program helped him with all that. I don't have the typing ability to explain ABA Therapy here, but it is a long, drawn out process. To be honest, I never could have taught it to him myself, I would have gone nuts !

In May Teddy will turn 21.In June of 2010 he graduated from High School.In a class of 82 kids, he was 45th in his class. Right in the middle. He has been working with his dad every day after school since he was 12. Instead of college, he now works full time with his Dad testing fire alarms. He is lucky. He has found a job that uses his strengths.He doesn't get bored doing the same thing over and over. He is a hard worker and a terrific young man.

On that spring afternoon way back in 1996, it could have been all bad news. It wasn't. He wasn't sick, he wasn't a lost cause. he was just going to need extra love and patience and we knew we could do THAT.

Episode 1 "The Boxes" (December, 1990)

In December of 1990 I was getting married, and getting ready to move out of my parent's house. My Fiancée (and now Hubby) Don had brought over his Jeep to help me move my stuff. I remember my Dad laughing and saying:
 'Don, I think you're going to need a bigger truck’
While my parents were sad to see me go, and admit that the baby of the family was leaving the nest, there were joyous that I would be taking all my stuff with me. And believe me, I had (and still have) a lot of stuff. I am nostalgic by nature, and a collector. This is a bad combination. Especially when combined with my Duran Duran obsession. Over the years, I had accumulated tons of stuff and had been storing it all in my parent’s house. Granted I had other stuff, too, like boxes of movies and photo albums, but it was the Duran Duran stuff that my parents were most eager to see leaving the attic. After the prom dress, the records, the clothes, the Nancy Drew books and the Lionel trains had been loaded into Don's Jeep, my Dad brought out the first box labeled:

 'Duran Duran STUFF - Cynthia's!! Do not discard !!'
"Oh that's not so bad,” said Don. My Dad starts laughing. Then my brother Ed comes out with two more boxes. These were labeled:

 'Duran Duran Books - Cynthia’s - DO NOT DISCARD!!'

Don gulps and then my Mom starts laughing. Dad goes back into the house and comes out with a long flat box labeled:

 'Duran Duran Posters - CYNTHIA'S - DO NOT DISCARD!!’
Don looks over at me and asks,
"Do you really need to keep the posters?”
”Of course!!" I reply, shocked that he would even consider asking me such a question. The box of posters was followed by two boxes of newspapers and magazines all labeled:

'Duran Duran Magazines - Cynthia’s - DO NOT DISCARD’

The last thing to come out of my parent's house is the milk crate containing all of my Duran Duran vinyl.
” Is that it?" Don asks.
 I go inside and look around the attic to make sure nothing was left behind. Then, I come outside and check the Jeep. It was now packed.
” I think we got it all”
 “So...how long do we have to keep this stuff?" Don asks
”As long as you have me, I'll have my Duran Duran stuff, so I'm gonna have to say, Forever!"
Two weeks later we were married. That was almost 22 years ago and yes, we still have it all.

December 29, 1990