Thursday, April 22, 2010

What a Wonderful World

It has been such a hard eight days (see my previous post) since George died last Wednesday.

I have never seen so many people come to a wake in my life - well maybe a President's or Elvis'. Easily two thousand people. The Knights did a service, the Priest did a service, the Fireman did their send off -- all at the wake. The funeral director, one of George's best friends, was talking to another one of George's best friends (apparently George had many best friends)...and they were saying that people were going to start showing up to the church at 8 a.m. to get a seat - his funeral was at 9:45. The police allowed double parking for the family. The church was packed beyond capacity. It was a beautiful service and much to the Father's dismay another of George's friends sang his favorite song "What a Wonderful World". There were over a dozen clergy there.

They closed off the Cross Island Parkway and Southern State to allow the funeral procession. We were dumbfounded.

George did much for the church, the community, his friends and family. He did much more than some of us ever knew.

It breaks my heart every time Andrew says these things "Uncle George, won't be at Aunt Nora's any more." "I wish Uncle George was still here." "Uncle George always yelled DON'T CRASH! DON'T CRASH! when I played my video games." "I'll send a kiss up to heaven." "Will Uncle George still know who I am when I get to heaven?" "Will Uncle George still love me?" He came home tonight and went to the fridge where there is a picture of Uncle George holding him and kissed Uncle George. Breaks my heart.

Tuesday morning Andrew had his "Clean and Green" show at school - so adorable. We cried because it was sad knowing that George won't be there for his First Communion, Confirmation, graduations...when they sang What a Wonderful World - I lost it. This video is of Andrew singing Baby Beluga with his group - of course he is the kid behind the microphone.


Thursday, April 15, 2010

Uncle George

My husband's sister, Nora, and her three children lost their husband and father yesterday. Very suddenly. He was Andrew's uncle and Godfather. Andrew was very sad when I told him. He said, ‘let’s get over there and feel them better’ – that is not a typo. He always gives me a kiss to “feel me better”. After he had a tantrum because we couldn't go over (Nora was headed to the funeral home) he wanted to call Aunt Nora but then froze on the phone. Later he said, let’s say a prayer for Uncle George and we said the Our Father and he came up the idea that he would share his daddy with his cousins. He asked me a few times "are you sure about Uncle George?" and unfortunately I had to say "yes".

There are so many things you can say about George. He was a man of medicine, a great husband, wonderful father and a “there when you need him” friend and even when you didn’t think you needed him – he was there and you KNEW it.

George didn’t know this – no one but Jim knew this – but I wanted George to walk me down the aisle when I married Jim. Jim didn’t want anyone else’s feelings to get hurt (especially his brother) – so he thought it was best if I just didn’t ask. Odd even then I knew people felt safe around George and I would have felt safe being on his arm and not so alone as none of my family was there for me.

George was a good man and everyone loved him - his colleagues, friends. A good man who would do anything for anyone – like drive in from Kings Point into Long Island Jewish when my little boy (his godson and nephew) had to get stitches in his two year old head and I was beside myself, come to our house to listen to Andrew’s chest when I’d get worried, run the St. Gregory’s festival every year even with his exhausting work schedule, volunteered at the Knights, coach sports, worked hard to give his children the best of everything and be there for family and friends during good times and bad.

George was the Pediatric Trauma Coordinator at Long Island Jewish. He was a PA and if you can judge a man by the number of people at his bed as he lay dying...there wasn't a better man. There must have been thirty people in tears at 8:57 a.m. when they stopped all measures - immediate family including Jim and I, doctors, nurses, hospital administrators. I know medical professionals work diligently to save every life - but this was above and beyond.

George was always the “hero” just like his father. Every time Jim and I went to Roosevelt Field we’d see Mr. & Mrs. Berry (George's parents) there – one day a toddler got away from his mother – everyone there – it wasn’t very crowded – got involved looking – guess who came around the corner holding the child -- Mr. Berry. At Andrew’s first birthday party and Elizabeth’s 21st (George's eldest daughter) birthday party, one of our friend’s children who was 4 at the time was struggling at the bottom of the pool – who jumped in and saved her – George. It’s in the Berry blood. Help people.

We will miss you George. Rest in peace.

Thursday, April 8, 2010

Kindness and colons

Today I baked peanut butter cup brownies for the pediatrician's office and for the tech at the pharmacy - who always remembers my name. She is kind. Even when she is stressed out and might not be grinning ear to ear - she is always attentive. I wrote her a note that read something like this:

Thank you for always being kind. When you give birth and are hopelessly in love with a person with autism sometimes life is hard. Some days your kindness is just what I need. (Or something of that nature.)

She called me an hour later to tell me they were delicious and that if there is ever anything she could do to let her know. I told her she already does enough and then asked her about babysitting this weekend. "I have a customer," she said before I heard the dial tone. :-)

People are so busy and I'm sure she sees hundreds of customers a day and it is nice to see someone other than myself who has a memory (sorry not tooting my own horn - I just have an excellent memory and I would totally score on that Instant Recall game on GSN). Granted I am at the pharmacy two or more times a month and then there are times I'm there two or three times a week (when Andrew gets sick they switch around antibiotics) but she just remembers me and it is refreshing.

Lots of things coming up. Bryan's 25th birthday (holy crap). Good thing I had him when I was 12 or I'd be stupidly old now. Jim's 45th birthday. Seventy five cross cookies to bake and decorate for Flo's great nephew's communion. Andrew has a play on the 20th that I have to decorate a T-shirt for - I'm going to draw the globe in a heart shape - it's all about loving our earth. Jim goes back to the sleep apnea doctor to get his anti-stop breathing contraption and then on the 19th of May - he'll go to Johns Hopkins to the colo-rectal cancer risk assessment clinic to get their opinion about his genetic testing. He's already past due for his colonoscopy - he drives me nuts with his procrastination. Last freaking April he got those genetic tests and he is still dilly dallying. I swear to God - if he dies on me - I'll kill him.

Andrew is so-so. He hasn't hit me yet today and it's 5:57 p.m.! Score.

Easter was nice. Andrew had a hard time at church but we survived. After we came home and packed up the goodies to take to Aunt Peggy's -- we decided to stop at the cemetary before going straight to Peggy's. We picked up some flowers and Andrew picked out red carnations for Nana, GrandDad and Aunt MaryEllen (all in the same grave) and he picked out pink carnations for Aunt Peggy (because I told him - it will be nice to get Aunt Peggy some flowers too). He gets in the car and says so sadly, "But I didn't know Aunt Peggy died." Poor kid thought because we were getting flowers for Peggy she must be dead! We had a laugh about that one and I made a note - more flowers for people when they are alive! (Hear that honey? Jim??? Flowers - remember those?) Forget the flowers - just get your colon situated. Oh, you know what I mean.

Wednesday, April 7, 2010

It's the little things

So far today is a good day.

His teacher said he did much better today. While walking to the car I went to grab his elbow (we can't hold hands anymore - he told me yesterday "you feel Irish and I'm American" -- at least I'm my true nationality now - before he said, "you feel Chinese") -- he said, "no mommy I want to hold your hand". It felt like someone gave me a winning lottery ticket. The hand holding lasted 15 seconds. That was just fine with me.

Tuesday, April 6, 2010

I keep on waiting..waiting on the world to change

I'm lost and second guessing myself.

To me (and my husband) Andrew's regressions: his screaming "you are an idiot" to a kid that gets too close to him on a rope structure at the Bronx zoo, his slapping me in the face when I chase him down and hold an arm to tell him not to run ahead, his angry responses to friends and strangers alike, his hitting his friend in the back because he "misunderstood" that Timmy wasn't teasing him he was sing-songing about the Bug Carousel, his increased flapping, his S.E.V.E.R.E. anxiety about everything from the car window being rolled down, "please close the sunroof I'm scared", traveling on the highway, going on a bridge, going to school, going to church....I could list how things keep seeming to get worse for pages and pages but that would bore you (anyone? anyone? out there) and just increase my sadness.

Regina, my friend, and a special education teacher herself doesn't think this behavior is atypical - that all kids do this. I don't see all kids doing these things - am I blind and deaf to other children? I don't think so.

At church, Andrew actually kicks the seats in front of us if someone, particularly a child sits in front of him. I don't see other kids doing this - other kids are happy when a child sits near them - a partner in crime. Not my boy.

I guess I keep on waiting for my child not to be autistic. I keep on waiting on a miracle. The school psychologist when I spoke to her for five minutes this morning - left me feeling even more depressed. She was listening but not listening - because she was standing guard on the sidewalk. I suppose if your kid isn't ripping off another kids head - all is well. I keep waiting for that day to come. "Mrs. Hartin you were right - Andrew is very violent. Billy can't find his eye." I know they miss things, I've seen it myself and one day someone is going to get hurt. He's only five now (almost six) but soon he won't be a little big boy. He'll be a big kid who will hurt someone. Please don't let that happen Lord (are you listening God?).

Yes, he is respectful to the teachers. But not everyone in the world gets down to his level, talks all 900 number voice to him and understands how to deal with him. Another child, another adult -- they don't get it - they talk to him and they are likely to get a fistful of grubby fingers. The real world - people we got to get him ready for the real world.

I feel like I always have to be on. Again, Naomi Campbell's handler. I get so mad seeing other parents relaxed, talking to their family members and letting their children frolic and I have to be within a few feet to pull a child out of harm's way. It's mentally and emotionally exhausting but it is what it is.

Everyone I talk to about this PANDAS thing seems to understand only one compotent of the syndrome -- the OCD aspect -- (there are many if my reading and comprehension skills haven't failed me) - not that Andrew has been confirmed to have it - but it seems to me OCD can be described as doing one level on a Wii game over and over and over and over and over again - amongst other things. All I know that is when Andrew is coming down with something that causes a fever - for a week or weeks before - his autism really SHINES - which makes me think that he has something else besides the autism and ADHD issues - that when he gets a virus/bug that everything becomes worse and the pediatrician thinking the PANDAS type syndrome makes sense. (To clarify - I know without a doubt Andrew has Asperger's - no questions - but I believe something else also kicks in before he gets sick - something that ups the ante.)

Andrew has totally changed his eating habits. He can't stand any smells. He won't hold my hand anymore. I have to hold his covered sleeve. He freaks to high heaven when I have to change his I go again boring you (anyone? anyone?).

I keep on waiting....

PS - As I re-read this I know I am ranting - but that is what I do best. :-)

Thursday, April 1, 2010

I'm just normal....

I have to post this before I forget.

My son told me this morning "Mommy, you aren't beautiful. You are just normal." Thank God - he didn't tell me I was monkey-butt ugly. That would have stung.

He is still sick - day four of a temperature - but today only got to 102. He is on antibiotics.

He is still having big time sensory issues. Yesterday he said "Please Mommy don't touch me. I can't stand it when you touch me. You feel Chinese."

I said, "What? I feel Chinese?"

He said, "I don't care for Chinese."

I think he meant the food and not the people but who knows. Mommy's little bigot.

Spoke to his neurologist - who is increasing his medication and adding "boost" dosages during the day. Going to start that next week when he returns to school. Praise the Lord! School. The most beautiful word in the English language.

What the hell is happening to our "utes"

While watching Good Morning America this morning for a few minutes, I saw a segment about flash mobs. How social networks like Facebook, Twitter, MySpace can incite riots and have hundreds of people showing up to a "party" or a location and most times it ends up in violence and vandalism.

Take the parents in Boston who left for a trip to Paris and left their 18 year old son and a key to their home with a neighbor. Apparently, the 18 year old was "talked into" having a party - posted about it on facebook and then four uninvited guests re-posted it as a let's destroy this house event. You can read about it here:

When you read what they did - I can't help but feel that they are animals. They should have to sit in jail for a day before bail is allowed and think about their behavior - is this not steps away from physically hurting people?

My God, I know this makes me sound old - but there is no way in hell even with all the modern conveniences we have now - would I have done this. My parents would have beaten the holy crap out of me. I was terrified of them but you know what - it made me a responsible kid and a responsible adult. My father put most of the fear in us. After he died, it was too late for my youngest sister. My mother let her go wild and now she is a crack addict. Just saying.

I think it is great that parents friend their children and children are comfortable to be themselves. BUT, do these parents have their heads in the sand?

Even kids in our neighbor at 10 p.m. and later - walk up and down the block screaming and yelling and tipping over trash cans, throwing pumpkins (in the fall), throwing rocks at cars, etc. Have they nothing better to do? These kids appear to be in the twelve to fourteen year range. If I even thought about knocking over some one's trash can - that belt of my fathers would have been all over my ass. But then again - I was allowed outside of our house alone after dark especially at that age.

I think kids need a little fear -- not of being beaten - but kids today just don't give a shit. They get whatever they want, they dont' have to work for it, there are no consequences, they have no conscious. I'm not saying every child is like this - but from news reports, my own observations ... it sure seems like more than not.

My oldest son will be 25 (yes, I have a 25 year old and a 5 year old - I wanted to be well rested before I had a second child) and he never did anything of this nature. In my 25 years of raising Bryan, I raised my hand to him maybe twice - once when he was ten and told me "f^%k you" - I slapped his face and he never said that again and I can't remember another time - but I want to be fair and say there were two times. I did feel like dirt after I slapped his face - but he wasn't allowed to talk that way and especially to his own mother. He still feared me. We played basketball, I had his friends over, we did fun things - but he knew who put butter on his bread and he never tested me. I'd have no problem with him spending a couple nights in jail - if he ever behaved like the animals in that Boston scenario.

This doesn't even take into account the bullying cases - the suicide in South Hadley, Massachusetts. What gets into a child(ren) that makes them be out and out mean to other humans. As adults - I can almost understand stress and pressure and telling someone to booger off and that they are ugly and you slept with their mama. But what causes teenagers to terrorize other teenagers. Not all of them were abused - don't give me that excuse. I had plenty of abuse as a child - not talking about beatings with a belt, but beaten over the head with a wire hanger and told by my mother not to tell my father or he'd get mad at her, made to stay in my bed for an entire weekend because I "did something wrong" - like asked if I could go on a school trip and other things I'd rather not mention here...and I didn't terrorize or abuse anyone else in my life. My husband begs to differ - but that is just nagging. :-)

PEOPLE pay attention to our "utes" - they are the ones that will be in charge of flipping our motionless bodies over every two hours so we don't get bed sores. Wake up parents of America (I'm not going international with my plea just yet)!!!