Chit Chat

Sometimes in this little Special Needs community I have become a part of, we joke that the "apple doesn't fall far from the tree." Meaning that it is not always surprising to meet the parents of a special needs kid and discover they are just as odd if not more quirky than their child.

I have noticed lately that little Lucy is a rather chatty little girl. She came out ready to go. At 2 hours old she had her eyes wide open and her mouth poised to speak. She has a LOT to say. She says it well, very well even, for a not yet 2.5 year old in big long sentences sometimes. She is remarkable, and people, friends, find it amusing to note that she "talks almost as much as her mother."

That's the other thing about these quirky kids, and more often their parents... we don't aways get social cues. This was one area that I had always thought myself rather savvy, the social cues part, but I am thinking lately that I have really, really, not heard all of the subtle and not so subtle ways people have been letting me know that I talk too much; too much, too often, over people, through people, dominating conversations and dictating when others speak. This trait I had always put on my assets side, the side with thin ankles and a college education, when it's looking more like this trait falls, apparently much more solidly on the side with thinning hair and my inability to remember people's names. I am ashamed.

I have always filled the space. Ask my sister, my dad. It's a family joke right? Actually I think I AM the family joke, and now with a bunch of people I really admire, I am starting to feel that way too.

How does it happen that something I thought was a skill, something I actually liked about myself, has become something that has gotten away from me and has ultimately turned into a flaw? Does this happen to other people? Are there things you thought you were good at that end up being something everyone else hates about you? Something you never thought of as a problem that once it comes to light makes you toss and turn?

We are loathe to label our children because we are afraid it will define them, limit them, make it so it's hard for people to look past their disability. What if they change or develop past that label? Will anyone notice, or will they look at what was decided about them years before and just prejudge them? What about when I am introduced as someone who talks "more than anyone else on the entire planet"? What chance do I have to learn new tricks there? Or will I also disappoint if I am tired and just don't feel like holding up both ends of the conversation? I used to love, love, sharing something funny that happened in my life, but I am realizing that I am so self conscious lately that I almost found myself unable to speak in front of a crowd the other night when I was on a panel. I've been speaking, or singing, in front of audiences since I was in the third grade. It's something I have done hundreds of times and enjoyed every single time without butterflies, and the last several times? well...

It's good to face your flaws. It's good to have people care enough to point them out to you. It gives you a chance to right them. Better now before I'm 40 so maybe I have a chance at the second half of my life of being a little less ego centric and little less selfish. Maybe I can ask more questions. I can hold my tongue and not share my opinion, because Lord knows I have one on every subject. I have already tried the not calling people thing; I don't need to be that phone call that people dread answering.

Although, and I'll be honest, I can have this sick feeling in my stomach and vow every night that tomorrow I will keep my mouth closed, but in the moment.. I don't know how. I don't know how to keep a story inside. I don't know how to give the short response. I don't understand how to keep the phone on the table when I want to share something. I don't know what it's like to walk past other people in the grocery store or on the street and not say hello, or chat with the checker or the person behind me in line. I've been teaching Lucy that we do not stare. I've been teaching that when we make eye contact with someone we say "Hello" or "Good morning" or "How are you?" I've been teaching her because people are going to be staring at my family a lot over her lifetime and I want her to be armed with words so she can make the situation of having a brother with special needs less awkward.. for herself, for others.

Lately I'm feeling like it's just one more thing I am doing wrong in the parenting department because clearly it's not working out for me to have learned to be a "Chatty Kathy".

Being Present

We went up to SF today to see my family for the day before they head out of town on Monday morning. We sat through 40 minutes of traffic to go three blocks then we narrowly escaped being caught in the Veteran's Day Parade (thank you men and women for your courage and self-sacrifice).

We ate at one of the Ferry building restaurants and for some crazy reason I thought Descartes and I could walk with both kids to the Aquarium at Pier 39 and meet the rest of my family who would take the trolley car. Do you know that the Ferry Building is actually not even Pier One? It was 1.3 miles to our destination. Not actually that difficult, except for these reasons:

• Lucy hates her stroller
• Descartes and I walk at two completely different paces. I do the fast "retail" walk, and Descartes? Uhm he has a smooth well-paced "lumber". Believe me, in an emergency Descartes could walk the 50 miles to save our family, but everyday walking together has been first a "ha ha" joke between us, then a problem, and now something we 'manage'... in this case I walked ahead with Lucy.
  
• Lucy hates her stroller.
• I wore my awesome black boots with a heel, which can generally be worn all day long.
  
• Lucy's stroller is broken and no longer has the ability to buckle anything to anything.
• Lucy is only 17 months (today) and therefore cannot walk 1.3 miles in the wind along a busy street without at least having her hand held.

Okay so blah blah blah.. Lucy rode on my shoulders for 1.3 miles, then we did the whole touristy thing... then we walked back! I felt like I was doing that Avon walk again.

I have blisters on the bottoms of both of my feet from wear my socks rubbed. Descartes hurt his back somewhere along the way yesterday.

The point of all of this is that we did stuff that my kids enjoyed yesterday... with my parents. We went to a little Mexican restaurant that did not even have table service... we went to an aquarium...we sat outside by the water and drank smoothies. I think everyone enjoyed themselves too. It felt like we really were all present in the moment and there wasn't a lot of pretense or stress (aside from that initial traffic), or high highfalutin' something or other for me to panic over (you can dress us all up appropriately, but I have a kid with a disability and a toddler.. those two creatures don't exactly blend in at the club). It still wasn't a "natural" environment to show off my kids, but at this point what would that even look like? And it is hard to rest when you are fighting for a table at the wharf, but it was closer, sort of, to my parents spending time with Jake and Lucy that looks like Jake and Lucy being who they are.

I don't believe we should live our lives around our children. I think parents coddle their kids, and give in way too easily/early. I think parents lose themselves in parenting, sacrificing their marriages and neglecting their minds. I think that removing all sense of winning and losing so kids can have "great self esteem" is wrong and going to seriously back-fire on our nation in the next twenty years. Kids should learn to sit nicely at the table, and have great manners and deal with itchy ties and stiff shoes, and be able to "not speak unless spoken too" if necessary.

but...

I do think that kids are only small once. I am never having another baby. My parents are never having any more grandkids...okay , maybe one more? But not from me. It will be from my step-sister who we never see anyway. So this is it. Everyone's chance to make silly faces and read books to tiny people with little fingers who can't turn the pages well. This is it to see wonder and the world through the eyes of someone who has never seen it before. Lucy can already walk and talk. They only saw her twice before she could walk, so the 'baby' part is done. That's it.

So I guess I'm glad we all went to the aquarium yesterday so they could see Lucy touch a sea star for the first time, and see Jake watch the anchovies swim 'round and around (they still may have a chance to see this in the future though, eh?). I'm glad we spent more time sitting and drinking smoothies in the California fall sunshine than we did gazing over menus at a beautiful high-end-hotel brunch.

There will always be time for poached salmon and eggs Florentine...but Lucy is already done with her stroller.

Get Me A Gun

If one more f*cking person asks me what I think of Jenny McCarthy I am going to kill someone, possibly myself.

Okay that is extreme.

I am still growing and learning, as we all are, and I believe each family has their own journey.... as long as your journey doesn't hurt me (or your child), you can travel whatever road you want, and I will do my best to support you. So here is kind of what I think about a few things.. and I am so fired up right now listening to Larry King Live that I may throw up.

• I believe that Jenny McCarthy saying her son has been "cured" is lame. I think we learn to live with autism, you provide your child with every opportunity to engage in the world and offer as many different ways to communicate as possible so the child can be heard. But fine, her kid is healed, or cured..not going to happen for every child with autism...not going to happen...so re-frame it Jenny...like "here is my personal story of hope that will probably not work for you, but buy my book and you can buy a piece of that hope." [To be fair, she does appear to have some sense that not all children will respond as her child did.]
  
• I do not believe that vaccines cause autism. Jake didn't have thimerosal in his vaccines, most of the kids born after 2000 didn't either, so all of the new diagnosis? Maybe vaccines trigger autism in kids with a genetic predisposition? Maybe. We do know that measles, mumps and rubella can kill children, as can polio.
  
• I do not think that every child with autism benefits from a Gluten Free Casein Free diet (GFCF). I do think that some children may benefit from diet change. Almost any child on the planet eating a healthy, preservative-free diet, carefully monitored by an adult who ensures that all dietary needs are being met.. most kids are going to be more focused, healthier and have better bowel movements. Paying attention to your child's diet is a good idea. Being righteous because you can bake bread with rice flour is not cool.
  
• I think that actors/porno stars/whatever/entertainers are not scientists, doctors, or researchers...anecdotal evidence does not mean a cure. Ugh. I also do not believe that doctors are Gods or always right.. so there.
  
• I do think that people correlate all sorts of things (good and bad) that should not be correlated : In the U.S. most people in car accidents have had french fries within two weeks of the accident. French fries cause car accidents. Also most people who win the California Lottery have been in a liquor store within one week of winning the lottery, possibly purchasing alcohol. Drinking can therefore help you win the lottery.
• My child is never going to have Hyperbaric Oxygen therapy...unless he has the bends.
• Any doctor Board Certified, DAN! TACA, Holistic, or working unlawfully and without credentials who tells you that they can cure autism, and all allergies, and ADD, and ADHD, and bad breath, and sleep disorders and corns and eczema with their wonder pill/magic formula is full of crap. However, if you want to take your kid to someone who believes that they can cure your child...go for it... unless you are harming your child, I support you in your effort.
• NAET® is crap crap crap "NAET clears an allergy by rebalancing your body's energy when you are in contact with the energy of the offending substance." and my favorite "If you are unable to be tested yourself because you are a child, pregnant, disabled, or too weak, you will be tested through a surrogate. " Allergy testing by proxy? CRAP CRAP CRAP.
  

okay I am tired.. I think a lot of other things too.

I do know that I have lost relationship with a person who is very, very important to me because we did not try NAET. She thought that I was not doing every single thing possible to "cure my child."

I wasn't willing to throw money away holding vials of wheat flour and water in my hand while a chiropractor gave me some acupressure...maybe that does make me a bad mother.

I already knew that.

I Won't Buy Hope

Is that wrong?

I am so tired of people taking advantage of parents with special needs kids, offering snake oils and therapies with no proven results, charging parents more and more money..

Selling hope. We have tried thousands of dollars worth of products. I am done.

I refuse to pay for hope. It will have to come from within.

well done please.

I just went crazy. yelling at our horrible neighbors across the street. They have been setting off fireworks all night...aiming over our house, and apparently I was done.

So done that I went to the front porch.. and yelled at the top of my lungs (and if you think Lucy is loud.. you should hear where she got those lungs...)

me:"That's it. Aim the fireworks over your own house"

punk ass kids: "We did."

Me--the crazy lady:"No. You did not.. not when it is coming down over here. I am done with you. I am so done with you. Knock it off."

punk ass kids: "Sorry" etc.

then sort of quietly "Fuck you."

and that was it, I yelled even louder:

"Don't tell me to Fuck Off. That is it. Cops are going to be called EVERY SINGLE TIME.I am DONE with you."

Enter my husband...
who looks like he is a bit scared of me.

I guess I was done. I am quite certain I was possible set off by some other things, like traveling with a small child today who screamed on the plane as we came down because her ears hurt, then coming home to my house... which amazingly did not become a clean, neat oasis whilst I was away... and having talked to my darling husband who (I think) owes me an apology for a mean tone of voice he used (under dire circumstances.. but it was mean just the same..)and he does not think he owes me an apology at all.. and I am behind on my project, and I miss my insane family and all of the Southern California drama.. and we are trying to decide where we will spend Christmas...and my downstairs bathroom is nowhere near being finished, and the back yard is still in a crumble jumble mess, and school will be starting in just a few weeks and we have not set up all that we should for our Special Ed PTA and I feel responsible,

and... and some very close family friends just found out that the baby they are carrying probably won't survive outside the womb, and if he did he would have what many would not call much of a life.. and I am pretending it is not bothering me, but it looks like they will terminate the pregnancy and I am just so sad for them, and sad that they had to even think about such a horrible decision and I feel sick inside because their doctor said things like "The child may never walk, and probably won't talk, and won't be able to feed or dress himself, or have any sort of a normal life".. and I know that their circumstances are different, but

those are all things that could have been said about Jake.

and apparently I was done.

and I yelled at the hooligans. and I am so so so done.