It’s my party and I’ll cry if I want to

Yep, yesterday was the first official pity party of 2012. I allow myself two per year and that is it.  I cried all day.  Earl drove the boys to their respective activities; he always knows when I am beyond.  I am completely and utterly overwhelmed right now. It’s funny that I am usually on it when I have a lot to do. It is certainly not when I have a lot to do that makes me sad or cry or feel overwhelmed.  What happens to me is when there are so many things that I need to attend to and many of them are out of my control, or I can’t do my part until someone does theirs, well that’s when the floodgates open up.

I always try to figure out the trigger. What occurred that can transform me from a motivated, get it all done sort of person to a mushball of tears and despair? It’s almost always traceable to a trigger of failed expectations brought on by something surfacing from the past. I love seeing old friends and had dinner with some old friends on Friday night.  One of my friends was staying with us;  she was visiting from NJ. She is a very loving and very dear friend. She and Bryan bonded in a way I have not seen before with any of my friends  and that too made me emotional. Most people gravitate to Jason, but it was clear she was interested in relating to Bryan, he knew it, felt it and responded to her.  The dinner was fun but when we talk about lots of people and stuff from our past I internalize it in a way that is not always positive. My other friend was talking about going to visit colleges with one of her kids and her other child’s very typical teen behavior. These are some of the good problems I will not experience with Bryan. I don’t feel sorry for myself. I have great kids and a great husband. But…. things just didn’t go as planned and that affects me differently at different times. My armor was already dented from so many things on my plate that it rendered me vulnerable to otherwise innocent attacks.

I watched a video that Bryan’s autism coach puts together each year. It was from last year and it always makes me cry;  I found it while straightening up and felt compelled to watch. Not the smartest of moves when I was already fragile. It is a montage of photos like a video yearbook, set to poignant music, of all of the kids with autism or as they call it the A-team. When they share these videos with us each year, it is at a breakfast where they honor the parents of the kids on the A-team. Their goal is to give you a peek inside what the kids do at school all day. At the school I always tear up but have to hold back on the heavy tears. Yesterday I sobbed so hard, but truthfully think I needed to get it out.

So today is a new day and I am ready to go, pity party is done and now, like many other moms,  I am looking for my invisible plane.

I’m a donkey on the edge!

Whew I am beyond. Here are the events as they have unfolded:

1. I sent a camp form to Bryan’s teacher a few weeks ago. She’s awesome so I was surprised not to get it back. I emailed her, she said she sent it back the day I sent it to her. Hmm, what the heck….

2. I called to see why Bryan’s camp check was not cashed. It turns out that the bank cashed it for the wrong amount. Really? It was for $7000 and the bank only cashed it for $7. Apparently I wrote the numbers correctly but not the words. I need to go back to my law school text books to see which controls. numbers or words. ugh.

3. I made about 20 calls to get growth hormone medicine ready for the boys for camp. I called to check on the status of the order and the woman from our pharmacy asked why I was calling so soon. I told her why and then she put me  on hold about 3 different times.  She said it was done but my gut tells me these calls are not over yet.

4. I had a mini meltdown at work. I think I was just feeling overwhelmed and stressed. I actually felt tears coming which is so wrong. I am a dope. I will proceed to berate myself about this for a week. Not good.

5. I am trying to lose weight, it’s not even a maybe, it’s a must. I wish that bitch Jenny Craig would stop emailing me.

6. I saw that video of the Dad (all over autism sites) of a special needs boy who put a wire on his son and recorded over 6 hours of the teachers and aide bullying and belittling his son. He did this because his son was reportedly behaving badly but neither he nor the behaviorist could figure out the trigger. I sobbed so hard. Can you imagine listening to that and knowing these people are educators? Can you imagine trying to come to grips with this?

7. Tomorrow is bring your rug rat to work day. Jason is coming with me in the morning and then going with Earl in the afternoon. I am happy to have him but I feel so bad that Bryan can’t do this. I would love to bring him but he’s way too disruptive and loud and it would not work. Every year it makes me feel bad. It’s the little things that always get me.  When I got home tonight he came out to meet me as he does each night. He said “Mom, tomorrow Jason is going with you to work.” I know him; he knows he’s not included and he feels left out. I told him maybe next year. Each year I hope he can come with me and hack it. Not this year, however.

None of these things alone are at all a big deal in any way. However, when put together in the same day can be a little overwhelming. I have this lovely photo in my office of a donkey just at the edge of the cliff. Someone call Eddie Murphy before it’s too late.

Sometimes you feel like a nut, sometimes you don’t!

Remember those commercials? As a kid I only ate the Mounds candy bars, but today I eat the Almond Joys too. Why limit myself to only one scrumptious candy bar? Seems narrow-minded.

I have been traveling for work for the past 2 weeks. I went to Mobile, Alabama, Alpharetta, Georgia and NYC. I love to go to NY, the energy when walking down the streets of Manhattan is like nowhere else in the world. Walking everywhere feels good and healthy and free. So funny how you don’t really appreciate something so much until you don’t have it every day. I went to a seminar that was pretty good but seeing some old friends; that was really the highlight. I am very sentimental and I value the connections that began when I was younger and have transformed into solid unbreakable bonds.  I had a great dinner with some friends from college, who in all honesty, I did not know that well in college but we reconnected. We had a 3 hour dinner and it felt warm and loving and we laughed about all kinds of nonsense. I feel they are so similar to me, we have a lot to be thankful for, a lot to be challenged with, yet seem to find humor and comfort in relating.

One night I had dinner with my 2 BFFs Pammy and Donna. What a treat!! We went to a cool NY restaurant and suddenly I didn’t feel so old and Floridian.  No one knew I wasn’t just coming from work to meet a friend for a quick bite to eat. I am so appreciative that all of these folks would travel into the city to spend time with me and these little pockets of reminiscing hold me over until the next time. We are approaching a big birthday next year and we talked about doing something fun together.

The last night I had dinner with my parents. They live here but were traveling to NY one day before I was leaving.  Funny, how things are. I see them all of the time but there was something different, almost clandestine about meeting for dinner in NY. They wined and dined me!! I know my folks; I bought gatorade for my room before I ever even went out with them, I knew we would have a few drinks. We went to a super posh restaurant and they bought me a beautiful pair of earrings.  It was fun, we laughed and ate and drank and enjoyed the “scene”. It reminded of dinners when I was young and single; but it felt better to be there knowing I had a wonderful family at home and that this was an indulgence.

I came home to a delicious greeting from my fellas. Hugs and kisses all around and that just never gets old.

So last night I spent the evening curled in a ball with sunday night anxiety. I don’t do well when my routine is upset and I worry about everything on my desk, everything I have and have not done for the kids, and just about anything and everything that seems bleak in the middle of the night.

Ad Nauseum

I am a walking advertisement for autism awareness. I am not sure exactly how this happened but I realize, based upon conversations I have with people that I am always raising awareness. I have autism shirts, pins, necklaces, bracelets, jackets, sunglasses, backpacks, bags, earrings, etc. If they had cats on them you would think I was a crazy cat lady. My office is filled with posters, plaques from walk events, paperweights, candles, etc. all with autism awareness decorations. If I saw anyone else with all of this stuff, I would probably think they were a little wacky. I guess I am a little wacky but I’m sure that’s not news if you are reading my blog. The thing is you don’t get all this stuff in one setting, you accumulate it over time. Some things I won from Autism Speaks as part of our fundraising achievements and some things I received as gifts, but others came from me always looking for something cute and clever to let the world know that we are proud of our son, we are part of a community and we are advocates.  It’s a little competitive too, I’ve noticed. People are always asking each other “where did you get that shirt, necklace, etc.”? I do it too. Yesterday was our Walk for Autism Awareness in Broward County. As I have mentioned before we have our family team and family includes tons of friends and friends of friends that come out and support us. We had great t shirts this year and one woman even asked me, “hey where can I buy that shirt”? I told her, ” you can’t, it’s our family team shirt”. Earl said I could’ve sold her one as a donation for our team. Silly!!!

On Friday I had an early morning meeting at work with a potential new vendor. The man came up to my office and afer he noticed all of my NY Rangers stuff, he told me he was Bruins fan (get the F out of my office) he shared that he too has a 12 year old son with autism. Ok you can stay. I guess my stuff/shrine invited him to speak. After we finished our business discussion we had a really nice talk sharing our respective challenges. He said they did not have another child because of all the things they had to do with their son.  I don’t know why but that always stings. Thankfully I had no idea anything was going on with Bryan when we had Jason. The idea of even having to make that choice feels like a sucker punch to the gut.

Later on in the day a woman who works at my company that I have met before but do not know well at all was looking for someone and stumbled by my office. We chatted for a few minutes and then she saw the “stuff” and told me her young adult daughter has autism. I think I am the one stop shop for this, perhaps I can become a shrink or grief counselor of sorts!! The community of people with autism has grown; everyone knows this unless you live on a deserted island, but I am proud to be an advocate and even more proud to be a mom of a child with autism. I don’t care for all of the high functioning, mid functioning, low, etc. He’s a kid with issues, but he’s a damn great kid.

At our walk yesterday we were joined by some folks that never have walked with us before and some of our team anchors that have been with us since the beginning. We are grateful!! Bryan loves it, we love it and it’s an all over energy boost for us. For those of us whose kids are preteens or teens, we are veterans and are proud to see our kids making progress, for the little kids, we can see their potential and hope to inspire the parents of the newly diagnosed. “hey look at us, we are surviving and our kids are doing ok”. We walked for a little while with our friends whose son is the same age as Bryan, they have been friends since kindergarten,  and we always laugh together and share our kooky experiences. Bryan and his friend walked together and for a short period of time held hands. We loved it.

He has needs too…

We went to a parent/teacher conference yesterday morning with Jason’s teacher. I am going to say I even though we went because I am feeling like a piece of crap; no not that good. This does not take anything away from Earl; he is a great parent and he is processing info too, but this is my blog and my ass whooping and so I am “I”. I think the technical term for what I am feeling is “head up your ass” syndrome. Our little boy needs some assistance and I think I’ve been too preoccupied with Bryan, Autism Awareness Month, this blog, work, camp forms, etc. to give Jason what he needs. I feel like I was approaching a decent grade in Mommy Class 301 and now I’m working a D going into the final. His teacher let us know again how smart he is but how out of focus he can be. He is not doing his best but some of this really pertains to us/me not disciplining him or providing him with enough structure to get his work done properly. Why was I watching stupid HGTV when I should’ve been doing more homework with him? Why was I working on a fundraiser when he needs me too? ugh ugh ugh. It’s like a dam, you plug one hole up and another one pops open. I am a mom, I am supposed to have more than 10 fingers and 10 toes to plug up these things.

So here is the thing; the teacher is right to get us to focus on him and what he needs to do to improve. Earl and I talked about it a little bit afterward. We both feel it will be better to give him an incentive to work hard rather than to punish him. Most of us are more motivated by positive reinforcements but we need to work as a team. The parting words from his teacher, who is a good teacher in the true academic sense, but is sort of a hag when it comes to her attitude were : “I know you have a special needs child, but he (referring to Jason) has needs too.” She did it, she pushed me over the cliff into the mommy pit of despair. Instead of deflecting her judgmental tones, I internalized and spent the last 24 hours trying to figure out how his life is not over at age 9. He does deserve more attention. I spoke with him briefly last night and we agreed that we need to work better as a team. I know that was just a band-aid on festering wound but I’m in Mobile, Al overnight tonight and so I at least had to approach it.

No more Scarlet “I’ll think about it tomorrow” O’hara for me. Today is a new day and a new opportunity to get on track.

Fat Chance

Ok, I admit, I am fired up this morning. Did you hear the news? Autism is now tied to obesity. Happy F-g Monday. That’s so funny because I was never overweight at all until I battled all of this depressing and crazy nonsense I deal with on a daily basis. I actually think rather than saying that if you are obese, you are more likely to have a kid with autism, it’s if your kid has autism, you are more likely to become obese from all of the self-medicating with food we do. I know they are not talking about me; I still am trying to get over the stigma of the “older moms” are more likely to have a kid with autism. It’s just another day in paradise. It feels like when you watch the news and you find out the local ax murderer is Jewish. Yikes, that is embarrassing; someone from our tribe was horrific and it’s just another reason to dislike Jews.

Don’t get me wrong, trying to figure out links and causes, that’s all good and necessary info but can we focus on finding these kids jobs, figuring out where they are going to live, funding good educational programs? GRRRR. They only studied 500 people. Well this whole stinking country is overweight, so guess what, of course obese moms are going to have kids with autism. The population is obese. Perhaps if my spanx weren’t so tight this morning, I could’ve taken the news better, but it just seems so dumb to me.

In any event, it is still Autism Awareness month and I will try to get myself together and focus on what is important. We have our walk this weekend and we are raising money and awareness. Time for breakfast!

What in the world ever became of sweet Jane?

Ok, more GD lyrics, sorry but they work so well.  I am so frustrated.

Here are the things that drive me nuts, and frankly put me over the top. Dealing with autism, not so bad these days.

1. People who tell me they want to help but add to my stress or load. For example, we are having Passover at our house  tonight, 20 people. We didn’t really want to host it, but that’s life. Everyone says they want to help and bring something, yet they complain about what they have to do.  Remember, we are the ones that work full-time and have a special needs kid. Get your assignment, do it, come with a smile on your face or stay home. Happy Holidays.

2. Let me know what I’m supposed to do, I can do it, just don’t make me run around like an idiot. I am trying to work out getting two kinds of liquid prescription meds plus injectable growth hormone meds for Bryan for camp. One pill and one injectable growth hormone med for Jason for camp. Does it really need to take an act of Congress to make this happen? The specialty pharmacy says call the manufacturer, that’s dumb.  We have two insurance companies, one that’s medical and one for pharmaceuticals. Is it possible for them to work together with the doctor? So there are 4 meds here, two doctors, two camps and a partridge in a pear tree. I know what you are thinking, they are not going until June, why are you doing this now? It will take me until June to get this worked out. Not anything to be upset about, just goes with the everything is a thing theme.

3. Special needs schooling. As you know we are trying to get Bryan into a good public middle school in our county. We want him to go to a school other than our home school and so the lobbying begins. What is interesting is that no one, literally no one, can tell you exactly how to do this. So you need to apply for a reassignment which is not until May, ok I got that. Then you need to apply for what is called the McKay Scholarship which provides funding for schools, public or private for your kid with Autism, so long as they have completed one full year in a public school. The schools want this money; it helps you get busing for your kid, and provides schools with money for the resources needed for your kid. But each school can’t have too many of these kids. Why is that? How the decisions are made on these two things and what magical formula you need to use, well anyone can take a big fat guess. You would think it would be straightforward. Nope. I have already spoken with 6 people and no  really knows. I think that is purposeful so you can’t say well I did X and Y and it didn’t work out. Now you see why I’m not feeling very nice anymore. Everyone has to advocate on behalf of their child, but this is nuts. What is really nuts about it is that if the damn school district applied resources equally and the governor didn’t cut half of the programs there would be no need for this. Instead let’s have people scramble all over the place and act like lunatics, that’s productive.

But since it is a holiday, I will try to end this on an upbeat note. Never underestimate your special needs kid. Jason often feeds our dog, Riggs. This is not a major chore but it involves a few steps. I asked him to please show Bryan how to feed Riggs and he did. He followed the steps and was very smiley proud of himself. Last night we came home from speech therapy. Typically when we get in the driveway, the drill sergeant Jason jumps out of the car and yells Bryan, don’t go in the alarm is on. I said “Jason, Bryan can turn off the alarm.” You see, even if he isn’t saying something Bryan is always paying attention. He punched in the code and turned it off. No problems, no issues. We were hooting and hollering like he    won the lottery. Bryan was so happy.

Happy Pesach, Happy Easter, Happy Friday.