I once had such perfect arms....

My heart is breaking.


These are pictures of his arms (from tonight) where he has bitten himself when he gets mad. I hate this. I hate this. I hate this. I have a huge bite mark on my arm from Saturday (and now I don't even care - I wish I had all the marks on my arms) apparently I somehow missed that he was biting himself again. Last night I had to hold him for 30 minutes while he sobbed because he was so mad and begged me to let him bite himself.   I have been so exhausted and not feeling well that when I gave him his showers/baths I missed these bruises.

I told him that it makes me sad when he hurts himself and he said, "I once had such perfect arms." I said they will be perfect again but he has to stop biting himself and us.  I told him we have to find ways to channel his anger.
He is having problems at school with anxiety, frustration and staying on task.  We are working with the teacher and school psychologist closely.  The problem and it will sound funny that it is a "problem" is that he is a very smart kid - scoring off the charts and so if he doesn't have academic issues - CSE doesn't care.  I'm going to see how next week goes - and if things aren't better - I'm going to call the neurologist and ask for a CSE meeting to see if we can't get him extra help.

God help us. He had a good day today. I hope they continue. Pray for us.

Sadness

I am just so sad.  Unbearably sad.

Friday Andrew ran to me after school and said - "I had a bad day - I cried three times.  I told you when I woke up this morning I knew I was going to have a bad day."  His wonderful teacher whom he loves and I do too told me - he had a time out for calling out after being warned and then apparently - his crying jags continued several other times.

On Saturday while Jim and Andrew were out for their "Subway breakfast" - they do that sometimes on the weekend when Jim is home, I got an exciting call from  Johns Hopkins.  When they got back I said I got some exciting news (about a study on colon cancer) and Andrew said, "I don't have autism anymore is that the news?"  He was beaming and jumping up and down.  I felt a crack in my heart.  I told him no that it was about daddy and he got upset and went to his room.  I asked him what was wrong and he said, "Autism makes me stupid."  I explained again that he knows he is not stupid - that he is one of the smartest kids in his class and he replied, "It makes me act stupid and all the kids make fun of me."  I think he knows that his crying and frustration levels are not normal and he feels all eyes are on him.  I hope they don't make fun of him - I don't believe they do but I know Andrew is very self aware of how he acts in hindsight.  He has told me repeatedly "I can't help it.  Mrs. M wants me to fix myself and I can't."  Mrs. M doesn't want him to fix himself - he feels that Mrs. M wants him to have control over some of his actions and that sometimes he just can't.

About ten days ago he told his father that the "cool kids" on the playground make fun of him when he does something wrong.  My brain says while they are sweet kids - they are just that kids and it is normal for them to make a face or not understand his behavior.  My protective heart wants to do otherwise.  I even told a few friends "that's okay the cool kids will be picking up his garbage every Tuesday and Thursday in twenty years while he at the hospital finding a cure for cancer."  (Originally I said brain surgery but in hindsight - lovely thing hindsight - he is way too jumpy to operate on a brain.) :-)

On Monday mornings he goes in for extra Math help - but not for help - just to have extra time on Fastt Math - the program that he loves.  He walks up to MM and a group of kids – and says the Giants beat the Falcons – they said they knew and turned their backs on him – and he tried really hard to talk to them but they weren’t interested.  I was getting really upset. But he walked away – regrouped and tried again and the next thing – MM smiled at something he said – and he stayed there in the group on the outskirts listening but he kept trying.


In the light of all things - these problems are small but they still weigh very, very heavy on my overburdened heart.

Where did two months go?

So much has been going on...and on and on....

The most important thing I want to write about is Andrew.  He is doing A.M.A.Z.I.N.G.  After school started he had mega anxiety and we saw his neurologist.  We doubled his medications and he is just doing wonderfully.   He still has a problem here and there - some anxiety, frustration.  Several times over the last two months he has become very agitated and has bitten himself hard but he hasn't raised a hand to anyone - except for one swipe (and frankly she deserved it)...joking joking.  No I'm not a card carrying member of the Ike Turner Fan Club. Joke, I do.  (Note:  I've been talking more and more like Yoda lately...maybe it has to do with menopause (early onset) and hair sprouting at weird places on my body....but digress, I do.)

My little boy is a math genius.  All he wants for Christmas is a program called Fastt Math (yes, two t's).  It's $300 -- he talks about it non-stop - so Scholastic (or Santa) - if you are reading this - please help an old, hairy white woman give her son what he wants for Christmas. 

Jim is still working like an indentured servant.  He is exhausted.  We miss him.  Plans still in force for a bed and breakfast by the Spring.  I'm starting on lots of packing and de-cluttering.  God, I love my kitchen things and cookbooks...but I love my family more (most of the time).  We will paint, pull up carpets and do everything we can to make the house ready for sale.

So no news is good news.  Off to make black bean pizza for my husband - he loves it -- barbecue sauce, black beans, cheddar and cilantro - it's actually very good. 

Happy Halloween everyone.  (My favorite holiday.)

A Fund for Jennie

UPDATE : Kim is the winner at $140.00 - I sent you an e-mail Kim. Thank you.

A little over two weeks ago, I became a better person.

While my blog content is sporadic rantings of my life - particularly with autism - I am an avid foodophile - is that a word? and if it is I hope it means I love food and not that I "love" food. I love to bake and cook and have more cookbooks than a person should be allowed. My husband jokes that something has to go to which I reply - "hope you find a nice place." My blog isn't fancy - I barely have the time to brush my teeth some days - so I don't have the time to make it beautiful - just read about the robot --we tried to make for Andrew once. My blog is my therapy as is reading other blogs.

Autism is a very lonely condition for the children and the parents. While I have great friends in "real life", I have made many friends through Facebook, Twitter and through following my favorite blogs.

One of the blogs and bloggers I follow is Jennifer Perillo. My last two posts were about the sudden death of her husband and how it changed me. I have to be honest sometimes I suck at being an understanding, grateful person. I am a pisser and moaner - but a pisser and moaner that would give you the sun and the moon if you needed it and sometimes even if you just ask for it.

The wonderful food bloggers of the world started Bloggers Without Borders and a fund for Jennie to help her meet her financial obligations during this time and beyond.

I have donated, placed bids and I have friends who are mailing a check or will be mailing a check in the near future but I wanted to do more. I am offering this Cuisinart 2 Qt. Ice Cream-Frozen Yogurt & Sorbet Maker for auction.

I will ship this ice cream maker to the highest bidder who leaves a comment by August 31t (which happens to be my 9th wedding anniversary). Once the auction is over, I will send the winner a paypal invoice and once it is paid - I will donate the funds accordingly. I will pay for shipping myself. Since this is for Jennie and her girls - could we start the bidding at $100.00?

If you can't bid, please think about making a donation - every little bit helps. If you want to send a check instead of donating through paypal, send me a message.

Thank you and let the bidding begin!

Addendum: I apologize for any typos in this post - Andrew has been right here next to me since I started this post and not sitting quietly!

Addendum 2: My teeth will not get brushed today since I took the time to figure out "fancy" hyperlinks. Look at me go.

Saturday Night and More Pie

I love Saturday night because I love Sunday morning. Sunday morning Jim doesn't have to rush out of bed before 6 a.m., take a shower and catch a train. I hate Sunday night because it means Monday morning starts another six days of Jim being gone for six entire days except for our fifteen minutes - "hi honey I'm home" at 9:30 p.m. talks. I use to be so angry about this. I use be so angry that I could never reach him - meetings, no reception at the data center that he works at on Saturdays or he is just too busy. My perspective has changed a bit now....I know that he will come home eventually.

My heart couldn't bear the thought of him not coming home, of never hearing his voice again, of Andrew not telling him "I love you daddy. I miss you daddy." My eyes well up now. My heart aches now thinking of Jennifer and the ache she must feel. I don't "know" her. I haven't been fortunate enough to give her the eight second hug but my heart still aches. I have worried about her and worried for her all week. I have prayed for her and I pray that I never have to experience her pain.

My sister-in-law went through this unbearable pain last year. Many women have gone through this pain...many men have too. We humans are strong. I feel Jennifer is strong.

I made an ugly pie. Even though I had an easy week compared to Jennifer's. I had a busy week. Last week of Anchor camp, preparing Jim's resume and some expense reports for him, collecting information about bed and breakfasts, collecting monies for the Anchor staff, making brownies for the camp, writing letters for the camp staff and volunteers, taking our elderly friend to the doctor, to the store, driving Andrew because the bus scares him, making soup for a friend who had surgery, making our dinners, feeding and bathing Andrew....it was busier than usual. But I made an ugly pie on Thursday night. I was too embarrassed to take a photo of it.

Tonight I made a trifle out of it - some brownies, some chocolate pudding, some pie - some whipped cream. I had taken a picture of Andrew eating a piece of the pie on Friday - it is posted above. Again, he thought it was beautiful. Last night, Jim had a small piece of the pie - he thought it was good.

Tonight, sometime, Jim will come home. He will eat dinner and have some trifle and watch his Giants pre-season game that I will tape for him and I will tell him I love him. He will come home and for that I am grateful.

A Pie for Mikey

I'm not a food blogger. I'm a great cook and baker (if I do say so myself). I love cookbooks and food blogs. I'm a mom who started this blog because I wanted to journal my experiences with autism and vent. Yes, I need to vent. I'm sorry I'm not perfect. I'd give my shirt off my back, I'd do anything for anyone - but I like to K'vetch. I'm Jenny, I'm Catholic and I like to K'vetch.

That being said, I'm a follower of many wonderful blogs and bloggers. One of the food bloggers I follow, Jennifer Perillo, www.injennieskitchen.com, lost her husband suddenly last Sunday. She has asked that everyone make a pie for Mikey today, to not put off living and loving because you are "too busy". I made a pie last night and it was late and it looks ugly (not to Andrew - he thinks it looks amazing). I'm going to make another one today and post a picture in the next day or two.

It's the last day of Camp Anchor - and I just can't tell you all how wonderful those young people who work and volunteer there are. The staff in the office -- amazing, the bus drivers, the lifeguards and the campers--such overwhelming love I have for them all. For the first time ever, Andrew told me today, "I believe in myself." You know what baby, I believe in you too. Always. We have love and thanks to Jennie - I will remember that every day. Love and kindness...the only things that matter.

Love each other,
Jenny

Oh, what fresh hell is this?

I'm a bad blogger. Bad. Bad. Bad.

What has happened since Mother's Day? School ended, Jim is working 14 plus hours a day, six days a week and then on the seventh sleeping(sorta like God - just joking no lightning bolts), Andrew graduated first grade and then started Camp Anchor (amazing place more on that later) and summer has almost passed us by. (Hooray - I'm a Fall girl).

Andrew has been "off" and "on". He had a bad spell of hitting and screaming and that has passed - he has lost his trip to Legoland in November. The last two weeks - he has been anxiety ridden, scared of his shadow, sobbing, jumping, flapping and depressed but he isn't hitting! He has wanted to spend almost every minute alone - every time anyone goes near him - he walks away. He has taken to hiding out in his room with the door closed - sometimes under his covers on the bed. We've talked and I've tried to comfort him - but sometimes he just wants to be alone - I can relate.

Camp Anchor is a truly remarkable place. You can read about it here http://www.campanchor.org/ . My heart is happy when I am there. I would work there full time as a volunteer doing anything. I can't say enough about the vibe of that organization. Love it.

We have a new goal we are going to start fixing up the house, packing up, painting, doing the floors etc. and then look into buying a bed and breakfast somewhere. We have all kinds of thoughts for this to supplement our income and if Jim has to he can always do IT work while I run the B & B. We don't mind hard work. Life is hard work.

I hope everyone is having a great summer.