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…

Pop Tarts and Social Skills: Foodie Tales from the Land of Autism

Knock. Knock.

Who’s there?

Ivan.

Ivan Who?

Ivan working on the railroad!

Pop Tarts are a main staple for J. His class has breakfast together every morning and try as I might to change his menu we always end up with Pop Tarts… They have Pop Tarts with jokes and trivia questions now– what a great social interaction tool for my little guy!  Every morning he tells a new joke and gets the desired response so he brings back the jokes from previous days and his classmates.

J likes white food– almost exclusively. He likes yogurt but it has to be the Trix brand. He likes string cheese but won’t even try other white cheeses… it’s a challenge.

A couple of weeks ago he stayed over with my parents and asked for spaghetti with butter. We don’t know where he got that idea since it’s not something we eat at home. My mom decided to make pancakes instead since he will always eat those but I tried spaghetti and butter a few days later and the response was a very adamant “I’d rather die!” (I choked back the laughter as best as I could…) ”Great sentence but I don’t think it’ll kill you!”)

Anything can be used to benefit social and verbal skills if you look for it… so, I’d rather J not be hooked on sugar with white flour but, at least they give him a jumping off point for a social interaction.

Another Follow-Up on Daytrana

Apparently the Academy of Pediatrics and Cardiology people are having a little tussle over whether kids on stimulants like Daytrana should have an EKG. Peds say no– Cards say yes.  Our Pediatrician says yes; Better safe than sorry. So we went in for an EKG earlier this week.

We went armed with a bag of books and the Leapster– amazingly I hadn’t even finished filling out the cardio questionnaire when we were called (I love this Dr.’s office– and the Dr.!) and went through the normal motions height: 45.5, weight: 45.5 (My kid is symmetrical!)

The three of us– J, Dr. K and I– talked about the benefits of Daytrana we were experiencing and  J’s skin irritation.  Dr. K said that Olive Oil will help with the skin irritation. We haven’t tried this yet because J likes the “blue lotion” (Bath and Body after sun with lidocaine) so I can’t say based of personal experience if it works.  I trust Dr. K with my kid and if he says it works it does.

Anyway– the EKG was no big deal (although the nurse had no sense of humor…) She put a bunch of stickers all over him and attached cables. (”I’m an Alien!”) He laid really still and she got the few seconds she need without any drama.  I showed him the printout of his heart going Ka-Thump, Ka-Thump and we decided that was pretty cool.

Dr. K said he’d call only if there was a problem but J didn’t show any signs of having issues.  YEAH!!

Our next stop was the library where he announced to Ms. Joyce the children’s librarian that he was an alien and just had a “Eeky.” She gave him a sticker.

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!!)

 

A Follow Up on Daytrana

Daytrana is a wonder-drug! We love it!! But– there are a few side effects that we are dealing with so I want to share the little tricks we’ve discovered to make the side effects less horrid.

REDNESS AT THE PATCH SITE

J is hypo-sensitive which basically means that he doesn’t feel pain– or pleasure– as acutely as most people. This isn’t all bad but has to be watched. Anyway, J’s skin gets really red and irritated with the Daytrana Patch.  We apply Bath and Body Works “Put it on Ice” which is a pain relieving cooling gel with Lidocaine immediately after pulling the patch off. It cools it and deadens the pain.  I assume that any post sun lidocaine lotion/gel would work we just had this at home already.  FYI– the first aid creme we tried first didn’t work. 

LOSS OF APPETITE

J is a skinny little guy. He eats white food and with Daytrana has been eating less of it.  Fortunately, Daytrana is out of his system within 3 hours of the patch removal. So, we take the patch off as soon as he gets home from school and have moved dinner to 7:30.  I am encouraging snacking all evening also.  We had been dealing with practically no eating at dinner and snacking starting close to bedtime so this works really well for us.

We ran an experiment along with J’s teachers and therapists– one week with Daytrana, the next week without.  On day two of no Daytrana, his teacher called and pleaded that we quit the experiment.  She saw so much difference in him!

Daytrana is a God Send.  J is doing so well in school and actually has two friends now– Moms are coordinating everything but the kids are doing so much better at interacting without too much prompting. So, we love Daytrana and feel that the side effects are manageable– well worth it.

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?”