Friday, May 28, 2010

The Cha Cha Parade

Yesterday was Field Day for the Kindergartens. Next year - just cover me with honey, sit me on an ant hill and release the bears. The good news was that Jim took off so we could double-team Andrew. The bad news is that now whenever someone mentions the words "field" and "day" in the same phrase I go into a full body dry heave (ala Elaine).

After the longest two hours of my entire life, Jim went home with Andrew to wash away the day's dirt and I went to the church to register Andrew for religious ed classes to start in September. We didn't eat lunch (Jim & I) so Jim graciously took us out to Fridays for dinner. The Southern State was backed up at 4 p.m. (no we're not ready for the early bird special - we were hungry) and it took us a while to get there. Andrew got frustrated with the stop and go traffic and shouted out "enough with the cha cha parade." I knew what he meant but I asked him - "What do you mean?" He said, "Go Go Stop Stop Stop Go Go Stop Stop Stop" in perfect cha cha rhythm.

I asked him if he had heard that phrase before he said, "NO! It just seems like a cha cha." This kid while turning every hair on my head gray is stunningly smart and witty. He also has a mean right hook. We got to Fridays by 4:45 and on par with the day - my favorite Thai chicken wrap is no longer available. Honey....anyone...honey?

It has been a rough week for me. Andrew cannot be on the playground after school for more than five minutes without becoming very aggressive, angry, picking up mulch to use as a projectile, threatening a child or crying. If he doesn't do this - he is wandering in a corner by himself. I have to say honestly the kids are already clicky. They have their play buddies and there is not room for Andrew - they tell him - "you can't come up here" (the playset) etc. That sets him off but in total honestly - sometimes he doesn't even need that to start the fire.

We can't go to a birthday party, have people over, go to church, basically do anything that involves human interaction without him behaving this way.

I have witnessed and my friends have witnessed Andrew's like behavior in the classroom and at school events. I have driven by at recess time and there are 24 to 48 kids outside with one to two aides watching them. You cannot tell me that he is being watched 100 percent of the time - which leads me to my point...yes I do have a point...

His team at school says that he doesn't show any of these behaviors at school. Yes, he gets frustrated and angry, he flaps, he pouts - but he doesn't have meltdowns or show aggression. Yesterday at field day (twitching starts) he had at least four explosive incidents. I don't buy it. While his team is great, they can't see every behavior of every child especially when a few of the typical kids should be evaluated for behavioral problems. The kids names being called out the most yesterday to behave were not the special needs kids.

I am pushing for a behavioral consultant. They are going to watch him more closely and see if they agree. The school psychologist was outside for ten minutes at the first event of field day (twitch) - during which Andrew had no issues. It was right after that when we started to slip down that slope.

When I brought up these issues, I was told that maybe he shouldn't be expected to go on the playground right after school. Do they truly believe I want to endure that torture? He cries to go. After three years of therapy, isn't it believable to think that he could survive five minutes before hell ensues. It was suggested that I should leave on a positive note before he gets upset - so that would mean going through the gate and turning right back around. I'm not exaggerating.

I'm not criticizing the school or what they believe they see. They don't live this. They don't cry because their child is angry or sad or lonely. They don't have a clue what it is to be so physically and emotionally exhausted that part of you just doesn't care if you wake up or get out of bed. I love my child more than anything - but when he goes to bed for the evening - I feel such an immense sense of relief sometimes that guilt consumes me and I cry again.

Update: I happen to drive by the school this morning on the way to the grocery. The two kindergarten classes were outside for gym so I slowed down. Andrew running after a group of kids with the soccer ball and I must admit - not being aggressive. I sat there for five minutes. For five minutes each aide and one of the gym teachers watching a typical child hula hoop with their backs turned to my child and his group. The other gym teacher and inclusion aide on the other side of the playground. So if my child was acting out or falling apart - would they notice it - I think not - not unless they have eyes in the back of their heads. Don't get me wrong - they work hard - they take care of our kids - but they cannot see everything.

Tuesday, May 18, 2010


I'm so nervous about leaving my complicated little boy for the afternoon/evening. I have over two typed pages of instructions for my sister in law entitled "Andrew directions":

1) Do not touch the light switch by the front door – that will shut down the t.v. and Wii – and sometimes the Wii doesn’t come back until you disconnect everything (including cables) and then the DVR/cable box – sometimes doesn’t come back on easily and I know you'll want the television later for yourself. I’m taping all my Wednesday shows –but you should still be able to watch a show (please be careful and don’t turn the cable box off when you use the remote –Jim does it all the time - he swears he doesn't and he hasn't in a while - but it happens). At 4:30 - on channel 33 (it will tape) is Andrew's favorite show - Brain Surge - he loves it...if he is fussy - tell him it is on. He jumps alot when this show is on.

2) The phones are in the office and there is one right next to the television.

3) Our cell phones: XXX-XXX-XXXX – XXX-XXX-XXXX – the address here in case of emergency XXX XXXXX Avenue (note to readers - I might not know Peggy's house number although I know where her house is and 911 can't get here by saying it's the tan house a red door) – Bryan has to be up by 6:00 to go to work (I knock on the door and make sure he is up) – don’t go in (scary scary).

4) Andrew’s medicine is drawn up on the counter and his medicine for his sinus infection too–– the syringes goes into his mouth – and he needs a drink of soda afterwards (cup in fridge with straw ready to go. GIVE HIM HIS MEDICINE at 5:15 – 5:30 ish.

5) Chicken rolls in fridge ready to heat – just use your own judgment – (around 45 seconds for a half roll should be okay) he likes it hot but not all cheesy. He hates when it is too cheesy and he hates when it is too cold or too hot. It's a slippery slope I travel.

6) His homework is in his folder – if he is being fussy – let it go. (he usually has one page and I can do it with him on Thursday morning).

7) Tea pot and tea things are ready for you!

8) He needs a snack after school – out and labeled. He usually eats dinner about 4 o’clock – and has a yogurt or watermelon around 6:00 or 6:30 – he just gets water – bottles in fridge – pour into his green cup.

9) AS SOON AS HE GETS HOME – PEE (he should not you!) AND he should WASH HIS HANDS (you have to make sure he does this - he gets distracted and thinks he does sometimes and doesn’t). He should pee every 2 hours at least – remind him – he’ll say – no I don't have to go but tell him he has to go. If he gets fussy remind him – he is trying to earn his dollars (our new reward program).

10) Before getting ready to read books- he needs to pee – brush his teeth (everything set out) – change pajamas (on bed) – turn his night light on – and his favorite books are there on bed. About 6:45 or 7 start that and he should be ready (after 3 or 4 books, about a half an hour) for you to turn off the lamp and say good night (leave his door open – or he’ll scream).

11) Computer – he likes: (he knows how to log on)
and -- Login in name:

(these are case sensitive). If you have problems – ask Bryan – (show him this paper). After 6:00 – no computer.

He likes Channel 123 at 3 until 4:30 -- those shows -- and then at 6:30 – he likes 131 Cyberchase but he doesn't always watch t.v..

The Wii he hasn’t played in weeks. Turn the television on -- turn the Wii on- take the TV remote and push INPUT once – you will see the Wii screen and he knows what to do. To get back to the television – hit INPUT three times – and you should be back to TV.

12) Although the last three days have been better behavior wise - if he gets upset and starts having a tantrum - approach him cautiously - don't think you can go hug him and make it better. Last week a part of my cheek was almost ripped out- and I know what I'm doing with him. Riot gear in the closet.

If you have any problems – you can call us.

Do you think I over did it? Trust me - I didn't. Our new reward program is that he gets a dollar a day - one for not hitting, a second for not screaming - so far he's made it three whole days. I'm starting up a new program for me - for Jim. If I don't annoy him, I get $10 a day. If I add in a "you are the most wonderful man in the world" that's an extra $10 and for the FULL wonderful wife experience - that's a $100. So far I haven't earned anything.

Wednesday, May 12, 2010

So glad it is only once a year....

Mother's Day that is....what a year just fuggedaboudit - little Brooklyn there for you.

I'm having severe panic attacks. Next Wednesday I'm planning on going with Jim to Johns Hopkins in Baltimore (we're in Long Island). We'll drop Andrew off at school at 8 a.m. - drive to Baltimore have lunch - go to his appointment at CR-CRAC - god I love that (colo-rectal cancer risk assessment clinic) at 2:00 and then drive home.

I have arranged for a friend to pick up Andrew and drop him off at home where my sister-in-law Peggy will be waiting to take care of him until we get home. Bryan will be here too - until seven p.m. so there is help. Andrew goes to bed between 7 and 8. But he needs his medicine, reminders for everything, just a plethora of issues and while I know Peggy is competent - I'm freaking out - I've never left him like this.

This weekend alone with the parties and disruption of his usual routine - I've paid dearly (screaming, crying, hitting, anxiety just to name a few) and that was just Jim's behavior - I joke I joke - although I must say Jim was not a very nice person to me on Sunday - and I will remember that once Father's Day rolls around. Father's Day - now that is a holiday I'd like to experience. Breakfast in bed, sleeping late, kindness and gentleness...a thousand points of light celebration. Me....a hollowed out bagel for breakfast and lunch -- he didn't want to go out to lunch after church and then the silent treatment all afternoon. I will give him this - I'm not the easiest person in the world to live with - but it was Mother's Day - throw me a flippin bone. Smile. A dozen points of light maybe. I don't need flowers - I bought my own damn present - you could have wrapped it. Andrew told me he wanted to get me (read: him) a Topsy Turvy planter but he didn't have any money (note he never has any money he's five). That was nice to get a thought....Jim - could have given me a thought...give me a thought. I bought my own damn Topsy Turvy strawberry planter on Monday and Andrew was so happy - and we'll get it set up this weekend. Damn infomercials. Andrew also wants to know - why we didn't act now and they could have doubled our offer.

I love my life. I love my husband. I'm just tired and scared and dealing with a problem I've had for thirty years. After Jim's colon is resolved (so to speak), I'll try to fix me.

Pray for us. I'll pray for you.

Thursday, May 6, 2010

Mother's Day

I've been neglectful in my goal to continue to bore the B-Jesus out of you all (all indicates many....perhaps it is too strong a word) who read this blog of mine.

I've been very busy lately - creating an organized table (30 pages long with 15 rows on each page) of each person's name, address, act of kindness, mass card...who supported the Berry family during this time (see two previous posts). Sadly, we (they) cannot possibly send a thank you card to all the wonderful people who stood on line to pay their respects - that number was over 2000 - but they (we) do thank every single person who paid a visit, said a prayer or thought about them during this time.

I've also had orders for cookies, doing desserts for family gatherings and trying to clean this would be so easy just to move. After next week's order - my goal (again) is to de-clutter - go through Andrew's clothes and books and then work on making my "baking" storage spaces upstairs and downstairs more organized and easy to use. I realized last week that I was not using my new microplane grater that I got six months ago - because I couldn't get to it easy enough and I didn't take it out of it's packaging. How stupid is that? I opened that sucker up and I grated my carrots for my meatballs so quickly and easily - I slapped myself for not opening it sooner.

Andrew has been doing so so. Better with the anger and hitting. He's having a hard time with the concept of Uncle George being gone. He also had strep and a sinus infection.

He is so smart that it boggles my mind. (The other day he said, "Mommy I could just eat you up - well not literally". What five year old knows the meaning of literally? (Perhaps we explain too many things to him - but I'm counting on his genius to give me a lifestyle I want to be accustomed to - some day).

The things he knows and picks up on. We were watching a portion of Good Morning America because Sam Champion was doing a piece on swimming with the manatees. Andrew is so into manatees right now - but while I was getting it ready to DVR they did a spot on the Lacrosse player in Virginia who beat his girlfriend to death. Andrew said, "He hit her?" I said, "Yes, he hit her." Andrew continued, "She died?" I said, "Yes, he hit her so many times she died. That is why mommy and daddy are so tough on you about hitting. We cannot hit people - we can hurt them and in some cases even kill them." "Really?" He sat there for a few minutes. He came over to me and hugged me. "Mommy I promise I'll never hit you again." I know that he won't be able to keep that promise - but I know and have a feeling he will really try hard and eventually he won't ever hit me again.

Happy Mother's Day to all the wonderful women out there who are mothers, will be mothers, take on roles of mothers and to my mother who has been dead now for a year and a half...I know you were mentally ill and didn't mean to do the things you did and I hope you have finally found peace and are happy.