Where’s The Parade?

Today it became illegal for children with developmental disabilities to be discriminated against by health insurance companies– Yes! Mr. Biden! This IS a big F*#@%ing deal!!

But, where is the parade? Families celebrate silently and politicians who voted for it shy away from the topic unless they are defending their vote… the President has taken 6 months to start talking about it in earnest and republicans are lying about it. 

Insurance companies are having tantrums and refusing to play– that gets the attention of the media. Republicans are proclaiming they will repeal healthcare reform– that gets the attention of the media.

But where are the families who benefit from this law? Why are newspapers burying the story on page 5 when full page covers were given to protests prior to passage? Why are politicians campaign websites missing the healthcare link under “issues”?  The silence is deafening.

MY SON HAS INSURANCE TODAY BECAUSE OF HEALTHCARE REFORM!! Children with developmental disabilities– autism, down syndrome ( Sarah, that includes your son!)– can no longer be discriminated against! Short of a cure for autism, or truely effective treatment,  the end to healthcare discrimination is the biggest thing that can be done for children with autism (Autism Speaks)! So– where’s the parade?

I call upon those who voted for this law (Sherrod Brown and John Boccieri– MY  SON’S representatives)– for families who spent years fighting for this day– for teachers, doctors,therapists and advocates of children with developmental disabilities– for the media who championed this law– CELEBRATE!   This IS a Big F*#@%ing Deal!!

Dr. Dirt and Dr. Death

I have two brothers: one is a soil scientist the other an infant mortality specialist with the CDC. So, it’s no huge leap that we refer to them- lovingly- as Dr. Dirt and Dr. Death.

They are so different and yet growing up they were best friends… as younger adults they took long motorcycle trips across the country sleeping under the stars and eating spam or tortillias. They are extreemely proud that they have swum across the border to Mexico… they made up songs about needing to have a “butt pad like a baboon” and they really enjoyed eachother’s company.

Then, the women in their lives started interfering in their relationship and now they only speak when there is a reason. They only see eachother when there is a reason. Those women are now gone but the closeness hasn’t returned.

They raise their children very differently. Dr. Dirt is much more like me– “I’m the parent that’s why!” Where as Dr. Death is of the school that allows their children to run the show.  That’s caused problems between them… and child rearing has caused issues with the rest of the family as well.

Dr. Dirt is my friend. He’s the guy I call to chit chat. He’s the one I call for advice on everything from gardening to computers. Dr. Death annoys me– I’ll just leave it at that.

My brothers are good men. They were raised in the same household by the same parents within three years of eachother. They are very different. I love them both.

Doing For Vs. Doing With

I’ve learned an important lesson this week: Doing something for my son is not the same as doing something with him. Frankly, it doesn’t even come close!

My time is spent doing things for my family– growing my garden, re-doing the playroom, organizing schedules, making meals, cleaning, washing and shopping… but, what really matters is the time I spend doing things with them…

Yesterday it was hot. J was planted in front of the TV, my husband was at his computer, I was playing hearts. We all hibernated into our own personal spaces and were wasting the day. I’m not sure why I did it but all of a sudden I rallied the troops: “Put on your swimming shorts– we’re going to play!” And, off we were to the kiddie pool on the deck. It was raucous, loud and we wasted a lot of water. But we were together.

People talk about families having dinner together as a great opportunity to talk. It is… but, frankly at our house that’s work. We prod and pry and push to get J to tell us what he thinks, wants, did… He’s always in a hurry to get away from the table and it’s just not quality family time so we don’t do it very often.  Playing is what works for us.  The trampoline, the kiddie pool or a good pillow fight are the best family times we have.  J ends up making some great sentences and there isn’t the “work” that’s involved in dinner conversation. Maybe the success of crazy play time has to do with his need for deep pressure. J’s autism seems to melt away during physical play.  He doesn’t care for organized sports but dutifully hollers “Go Purdue!” when prompted.  He doesn’t stick with games despite my efforts to get him to play to the end. But he can’t get enough of crazy, disorganized raucous playtime.

It’s important to do things for my family. It’s good for all of us that I’m growing a garden and that there is food in the house, clean clothes to wear and the playroom renewal project is a good thing but J won’t remember what color the walls are or what white food I bought in a particular month.  He will remember whether I spent time with him. I guess that’s all that really matters.

 

 

Evil Step-Mothers

Let me start off by saying that I don’t have a step-mother. My mom is alive and well and we had lunch together today.  My best friend since college (that’s almost two decades of huge phone bills) has an evil step-mother.  This woman is nasty.  She has managed to turn my friend (Chola) into a pariah within her family… she yelled at her at Disney World! How much worse can you get?

Let me back up a little. Chola’s mother passed away suddenly from complications after a minor surgery.  Mom Jones was a wonderful woman! She checked in on me from time to time just because I was Chola’s friend. She cried with me when I found out that J has autism. She was a surrogate mother when my own mom was overseas for most of the last 20 years.  I miss her and her daughter really misses her. 

Dad Jones is from that generation (or is it just a culture?) that expects men to be taken care of my the women in their lives… first his mother, then his wife.  So, when Mom Jones died he went lookin’ for a new caretaker within a couple of months.  So, he marries this woman who he really doesn’t know and who turns out to have lied to him up one side and down the other and pretty much cuts Chola out of the picture because Becky the queen B#@*! doesn’t like her. Ok. I’m over simplyfying but the whole thing was just so immature that it’s barely worth remembering let alone writing down. 

Chola has resigned herself to having a very superficial relationship with her father… she is resigned to her own daughter not having real grandparents… She is coming to my family reunion this year and I know her daughter will be spoiled and loved on and treated like one of our own by the whole clan.

Here is an article that Chola sent me with this note “I can’t tell you how many times I wish she’d go away or get hers but even when she does … it doesn’t change anything does it?”  http://www.teresastrasser.com/pages/syndicated_column_63.html

I pray that my Mom lives forever…

Yard Sale Philosophy

I’ve been on a real purging kick for the last six months… it’s amazing that I still have enough for a yard sale considering how much I’ve sold on EBay and given away.  We moved from a monstrous Victorian to a reasonable (cleanable in 1 afternoon) Tudor and there are still a lot of boxes unopened in basement and attic.  I’m tempted to just price the boxes and sell them as a mystery item… that would sure be easier and I wouldn’t be tempted to keep any of these things that I haven’t used in three years!

But no. I’m going through each box and pricing the different items… probably will get more for it that way but, my “keep” pile is growing… Maybe that stuff will go in next year’s yard sale…

I’m amazed at how much I’ve held on to– scraps of fabric, maps I picked up in my travels, a box full of pencils, pens and rubber bands, movies we haven’t watched in years– and computer cables in triplicate for each computer we own. It’s bizarre… I didn’t grow up in the depression like my grandparents and I’m just now getting into reducing my footprint on the earth so why haven’t I gotten rid of this stuff before now?

Growing up making international moves I have one box of my treasures from childhood but, I have a box for each year of my son’s life… maybe I’m over compensating.  Will my autistic son care that I’ve saved these things for him? Do I need these things to remember in addition to the many boxes and discs of photos? Apart from photos, my parents have one shoebox for each of their children– that seems more reasonable than what I’m doing. Oh well…

I have become a conscientious consumer. What we need we buy. What we want we consider whether we’ll still want it next week… month… year. We consider where it will go and, frankly if we’d be able to get rid of it when we are done. Is it cheaper to buy or rent a movie? Will it be on cable in a few months? Will it re-sell on EBay for a good percentage of what we paid for it when we’ve seen it a couple of times?

Yard Sales don’t usually make a person philosophical but, when reducing consuption is a concern/priority even a yard sale makes you think…

My Modern Victory Garden

Victory Gardens were promoted by the US government during WWII as a way for families to deal with the rising cost of food– and, food shortages. It was patriotic to have a garden producing food for the family. Communities sometimes used vacant lots and those with property planted gardens.

I’ve planted my first Victory Garden.  Unlike the Victory Gardens from the WWII era, my garden is designed to be beautiful as well as functional. Companion plants are also taken into consideration although they didn’t mandate the layout. (I’ll get more into companion plants in another post but they are plants that use different nutritional parts of soil and therefore grow well together– that’s really simplistic but you get the drift.)

The most important goals of this garden are to provide food for my family and my parents (who live in a condo) therefore saving money and reducing our footprint on the earth.  It’s organic. I’m learning about composting. While I doubt that this year I’ll be able to, my goal is to be able to set up a booth at the local farmer’s market– so, I’m growing a lot of unique vegetables– like five varieties of carrots from Seed Savers International and Heritage tomatoes.  Things that most people won’t have in their gardens and I hope will be attractive to gourmet cooks.

This is a learning process and I’m documenting my failures and successes.  Much of the ground I have taken for this was grass– a nice ground cover but, how much of it do you really need? A little room for the kid and the dogs, right? (I digress.)  Anyway, I’ve already missed the boat with the carrots… you’re supposed to put them in as soon as the ground is thawed but, I just got them in yesterday so it’ll be mid August before we get our first taste. Learning curve, right?

I’ve done three beds with weed-matted and mulched walks between them which are modeled after German kitchen gardens although this is much larger than the typical kitchen garden. There will be a row of berry bushes dividing it from the rest of the back yard and a fence separates it from the front yard. I’m experimenting with herbs between vegetables– like rosemary next to carrots and basil next to lettuce and spinach. My hope is that it will affect the flavor. We’ll see since there isn’t any pollination I don’t know if it will matter.

My next project is to get water barrels set up to water this garden and greater decrease our family’s footprint and decrease the cost of growing this garden.

There is something good about a garden. Watching things grow from a tiny seed, getting down on my knees to pull weeds and watering in the evening. It somehow cleanses the grit of real life.

Viva La Gardening Revolution!!

Spring Break at the Smithsonian

Earplugs, Cousins and Dinosaurs

I am so behind with my blog!  But here you have a few pictures from our spring break in Washington, DC and Maryland. I haven’t gotten the video done yet… Shame on Me!! But, we really had a great time! We went to the Smithsonian Museum of Natural History three times and saw the Dinosaur IMAX movie each time– J loved it! There were a few things that made these excursions a success– we had earplugs, went at his pace and the museum is designed so that anything that is touch-able is ok to touch. It’s a great place!! J did a lot of reading and learned a lot about Mammals and Dinosaurs. He had no interest in several sections so we didn’t linger there– like butterflies and birds– those freak him out…

We did go see Kermit the Frog twice at the temporary exhibit at Air and Space. (American History, where Kermit usually lives, is closed for remodeling). J loves Kermit! We also saw R2-D2 and C3-PO (J calls him CPA! HA!!) The place was crowded… there were lines and J did great anyway. 

My goal is for J to have a full life with lots of experiences and memories. The fact that he has autism (not the other way around!) is not a deterrent– it’s a factor.  I carry earplugs, snacks, an extra t-shirt in case he gets it wet (that’s a BAD thing!) and he carries a “guy” or two. We go at his pace and there is some negotiation– first we go see the dinosaurs then Mom wants to see the Hope Diamond, then we’ll get pizza.

We build in alone time for J whenever we travel. We make sure he has a ton of his comfort things– favorite shoes, jammies, toys and always– a DVD player with headphones. We carry extra clothes and an umbrella. Autism doesn’t limit what we do– it only affects how we do it.

The kids in the photos with J are my sister’s kids.

(My apologies for being silent so long, Darcy!!)

 

Spring Break

We’re off to Maryland and DC for Spring Break! Couldn’t just have a fun trip right? Education… visiting family… and some fun too…

J is going to do a project– a video of his trip to share with his class… grandparents and if you’re lucky; you too… We’ll see if I can figure out how to upload it.

Anyway, I may not write much for the week but don’t worry Darcy we’ll be back soon.

Happy Spring!

 

Girls Don’t Have Winkies

J had been watching Veggie Tales and playing with his pirate ships when he came into the kitchen and said “Mom, can I see your winkie?”

“I don’t have one. Girls don’t have winkies.” He looked at me for a minute and then reached to pull up my shirt. I backed off a little and told him again: “I don’t have a winkie.” “Girls don’t have winkies?” “Nope. Girls don’t have winkies.”

He looked at me for a long moment before asking; “What ‘cha got?”

“What do you want for dinner?”

Thinking About Uncle Stan

With Luke on American Idol (he was voted off last week… guess I didn’t vote enough while I had the flu…) I’ve been thinking about family members who I haven’t thought about very often or seen in many years. Uncle Stan in particular. He was my great uncle and passed away more than a decade ago.

Uncle Stan was a gentle, soft spoken man who gave great hugs and had a wonderful contagious smile.

One Spring Break in college, a friend and I drove to Florida and spent the week with my grandparents. My grandparents took us to Homossassa Springs attraction with my great uncle and aunt where they have a petting zoo and take you out to see the manatees.

I don’t remember a lot of details– it was many moons ago– but, I do remember sitting on a bench and talking to Uncle Stan.  He was genuinely interested in me. He wanted to know about my life and interests. He was a very kind man and I miss him.

There is a word in Portugues that just doesn’t transulate into English– Saudade. It means to miss someone/place but much more. Saudade doesn’t refer to a thing you’ve misplaced– it infers a longing, even an ache.  Saudade has a wish attached– I wish I could be there, see that person, return to that time. I feel Saudade for Uncle Stan. 

He would be so proud of his grandchildren and their accomplishments. I wish I’d known him better. I wish I still had that chance.