Taking the Scenic Route

Zach’s Dad and the Christmas letter (split from a post about autism)

30th December 2008

Zach’s Dad and the Christmas letter (split from a post about autism)

This holiday was difficult because of the loss of Zach’s dad. We found ourselves having to correct ourselves when presenting gifts from “Grammie” instead of “Papo and Grammie”. We are still really struggling to adjust to the idea that he isn’t here any more. We are finding our thoughts wander to him and his absence feels really profound, despite the fact that we didn’t see him very often. My thoughts often went to Zach’s siblings, knowing that they are likely feeling his absence much more immediately than we are, and how difficult this holiday must be for them. Even for us it was enough to make it impossible to write the traditional Christmas letter and card because I just couldn’t find a way to state the obvious without feeling competely ovehwhelmed with grief. I have thought about just sending the cards late, but honestly, I don’t think I can. It is just too much for me right now. The grief is just too fresh and raw.

Until I talked to my mom about it, I didn’t even realize that it was just this year that Zach graduated with his Master Degree, and, realistically, we did actually have some good news to share in a Christmas update. Before talking to her I felt like the whole letter would be: Zora is growing, Zane is still autistic, I am still fat, and Zach’s dad died. That pretty much summed up how I feel right now. It isn’t fun, it isn’t uplifting, and it is a picture of people really working to keep our heads above water. I WANT to feel empowered and happy, but I don’t most of the time. I feel pretty fragile most days to be honest. I take things much more personally than I should because I am just struggling to hang on most days. I know it will get better, and I know I have the strength to keep going, but some days it is just really hard. I feel so very, very human many days.

As I look towards the next year, I just hope it is better than this year. I look forward with hope and resolve to do everything in my power to make it as good of a future as possible.

posted in Christmas, Death, Papo (Z's Dad) & Grammie | 2 Comments

30th December 2008

Maybe Fifth’s Disease

Zane developed a lacy rash today, along with the red cheeks & ears, and the gastric symptoms. We sort of freaked out at first, but it looks like it is just something annoying most of the time. Zora has sort of pinkish cheeks now too and has had some of the gastric symptoms too…I now suspect she might get a little worse before getting better too. Yuck.

This is the 3rd day in a row we have had to wash all of our bedding.

posted in Health, The Kids | Comments Off

30th December 2008

Autism this Holiday Season (edited into two posts)

Honestly, he did a lot better than he has in the past. There is growth and improvement. However, it doesn’t mean it all went smoothly. We missed church the Sunday before and on Christmas Eve because he just wasn’t dealing with life very well. He seemed to be on the edge of an emotional break and I felt like I spent the last week or two trying to balance his needs with the holiday stuff. I did a better job than in the past (experience does help) and he didn’t have a meltdown, but it was really close a lot of times.

I think one of the main things that made a difference was my ability to let go of what “should be” to “what is”. It is sort of depressing, on one hand, because you want your child to be able to enjoy everything and dive full force into what is “supposed” to be fun, but it is more important to recognize when your expectations are not realistic. I really, REALLY wanted to participate in the Christmas Eve program. I could almost TASTE how badly I wanted to do that. However, not only was Zane starting to crack on Saturday (before the Sunday of the last rehearsal), and was totally not dealing with anything by Sunday morning, but he was really, REALLY not dealing by Christmas Eve. He was incredibly thin-skinned, having a hard time dealing with typical conflicts and interactions, plus he developed really bad bowel movements (really watery and stinky), presumably from the difference in food. (we also realized later that we hadn’t been as consistent as usual with his anti-yeast meds as we had been…so I feel guilty about that too).

He did seem to enjoy things, but he also seemed to be PMSing on steroids through much of the week. By his birthday, he was barely hanging on, and by the next day, he was sleeping extensive amounts, puking, not eating much, and was screaming every time he needed a new diaper (with no solids waste to be seen). He was in agony and life was a stimmy, stressful mess for everyone around him.

This holiday season was another period of growth for me. Sometimes painful, sometimes a feeling a resignation, but mostly just trying to enjoy “what is”. Mostly in the moment and doing a better job of giving him gifts that he will enjoy rather than what I want him to enjoy.

posted in Autistic Life, Christmas | 1 Comment

30th December 2008

Relief

My brother’s much anticipated divorce is final today. (well, yesterday, it is after midnight). I know it is sad on a significant level, but I am mostly relieved. I wish things could have been different for him because I really wanted him to be happy and know the comfort and happiness that comes with a good relationship, but I am relieved that he finally was able to let go of an unhealthy and abusive relationship.

She was not only difficult for my brother, but my parents. They really went the extra mile over and over again for her, but she was unable to appreciate all that they did, either emotionally or physically and was just inconceivably horrible to them. I am glad to close that chapter of our lives. She also became really wierd to us after the autism diagnosis, somehow taking a personal affront that Zane was autistic (although I never really figured out how it was that we were being nasty to her because Zane was autistic, but oh well). She had a knack of turning ever single situation to be something about her. She was self-centered on a level I have only rarely encountered before, a phenomena to behold.

I am glad that we no longer have to walk on eggshells every time she is a part of a family gathering; always concerned that we would inadvertently say something that Steve would spend weeks “paying” for, or serving food that she would whine about endlessly, or not show “enough” appreciation for something (it wasn’t enough to say a simple “thank you” to her…ever, despite the fact that the gifts she gave were usually more about what she liked than any resemblance to anything we were interested in…after all, she is the one who gave us that hideous Hummer remote control car meant for 10 years and older when Zane was two…so very many things wrong with that), or making sure to make her feel included in every aspect of every thing we ever do, even if it is the kid’s birthdays or a kid-centered holiday, or trying not to mention “Christmas” or “Easter” at the celebrations because it suddenly was offensive to her (she was Christian when they married, but when her dad became some sort of Christian that didn’t celebrate any of the Christian holidays, suddenly she didn’t either, and took offense at the mere mention of the holiday…far more offense than any of my Jewish, Islamic or Pagan friends, it became a real landmine to try and celebrate anything without a whole lot of tension.)

I wish she could have been the person she presented herself to be, but she wasn’t. I am sad for my brother because he really was hurt by her, and really went the extra mile again and again for her (including the divorce, where he took on almost all the extensive debt that she created and postponed the divorce to give her time to get health insurance…far beyond what was even reasonable in my opinion). He is a gentle, kind hearted guy and he really got screwed, but he can walk away with a clear conscious and knowing he didn’t compromise his values, and for that I have a great deal of respect for him. He is a good person, through and through. I am proud of him and hope he finds some happiness.

posted in Extended Family | Comments Off

29th December 2008

Christmas Eve Anticipation

From the 24th

Zora helping make the cherry pie filling (before the stove got hot, btw). I hope to post a video of this later because it was really cute.

Gingerbread People and Gingerbread Houses for Santa, cooling off from the oven. (the cooling rack is over some of the freshly made fudge…I was running out of counter space for hot things)

Helping make the bread

Happy Anticipation as they get ready for bed, hang their stockings, and put out the cookies and milk.

Neither of them could get to sleep, they were too wound up. It was too short of a night for the parents. (Although I did have a glass of wine, and I determined that is a new Christmas tradition I might have to continue…so much less stress. lol)

posted in Christmas, Food, The Kids | Comments Off

29th December 2008

Zora turns 3!

From the 23rd

Zora’s birthday party was fun. She has been talking about her birthday party for weeks already, insisting that she wanted balloons, cake, party hats and presents. (although she was never specific about the presents part, which made me giggle a bit). She decided she wanted a “Dora” party. Party guests included: The 2 Opas (although she is starting to call Grandma “Oma” now sometimes…but she is still an “Opa” most of the time) and Robert’s family. We had pizza and cake and ice cream, then opened the presents.

Dad’s hat cracked me up

I think she was as excited to give the gift as Zora was to get it. (Polly Pockets)

Zane helped pick out a Leapster for Zora. He thought she would like the green more than the pink one. For some reason, he was really intent on her opening his gift. As soon as it was opened, he wanted to test it out for her. (we got it primarily because she keeps running off with his handheld games and it really upsets him, so now we have something to bargin with.)

From Grammie Z, a music/treasure box. The writing on it says: “Discover your world ~ my barefoot child ~ your dreams will take you there ~ your heart will guide”. She loves to open the little drawers and watch the horse turn when it plays.

From Grandma & Grandpa, a ride on bear (that Zora calls a dog) that both of the kids love.

We also got her some Polly Pockets, and both girls went to work playing intently with the dolls.

It was fun, but I can’t believe it has been three years. As always, it is going too fast.

posted in Birthday, Friends, The 2 Opas (J's Parents), Zora | 3 Comments

29th December 2008

Christmas Cookies with Grandma

From the 20th

The annual “Christmas Cookies with Grandma” was a success, as usual. Mom said it actually went smoother this year because Zora was much more able to participate. Everybody had fun. (including mom and dad who went out on a date while Grandma was here).

Grandma’s secret cookie recipe

posted in Christmas, The 2 Opas (J's Parents), The Kids | Comments Off

27th December 2008

Zane is Seven!

Zane wanted a Mario theme for his birthday. I could not find any Mario themed birthday stuff anywhere, online or otherwise. When I was at the Party Store (where I get balloons and plates and stuff), there was another mom there with a boy who was turning 6 on the 27th also, who wanted a Mario theme for his birthday party and we lamented the lack of Mario stuff. In passing, she said something about how weird it is because it seems like kids always want the same themes at the same ages. I know it was just a passing comment to her, but to me it almost made me bawl. I remember another time standing in line with my Thomas themed stuff and another parent was commenting that her 2 year old liked Thomas too. It is so cool that he likes stuff that is age appropriate. I know that might not always be true in the future, but I enjoyed the comment anyway.

Anyway, I got “Mario” colors, plus orange (his current favorite color), and some stars (there are stars in the games) and hoped that he would see a theme in it. He did. When I asked him which hat he wanted at his place setting, he wanted “Mario Party Red”. Score!

Usually I do the cake decorating if we don’t order a cake (which we often do simply because the holidays are too busy for me to have the energy and patience to decorate cakes), but since Zach is better at drawing Mario, he wanted to do it. It was the first cake he has ever decorated. We ran into several problems along the way, the main one being that we didn’t get enough icing (and I really didn’t want to make icing), so we had to cobble together several of the leftover cookie decorating icing with the stuff we got for the cake. I was also reminded that our oven is not leveled, which resulted in one corner of the cake being about a centimeter thick, and the opposite corner being a good 1.5-2 inches. The thing that made it worse was that the second cake wasn’t quite as uneven, so even when we moved the layers the other way, it was still really uneven. (and I did not really want to go to the work of cutting off the top to make it more even because I don’t really have the appropriate tools to do it easily). It was a little goofy. By the way, Zane wanted Strawberry cake, so we were also dealing with an odd color to try and cover up with frosting.

The most important thing to know here is that Zane loved the cake. Even Zora loved the cake and was excited about it. Had we paid for it, it would be a candidate for Cake Wrecks, but since it was lovingly made by a Dad who had never decorated a cake in his life (and declared “frosting is a lot harder to work with than paint!”), I think it is a masterpiece and I love it.

The guest list was the same as Zora’s party, except that Robert’s wife stayed home.

Zane was a little overwhelmed after the week of festivities, and then the blow horns I chose happened to also be noisemakers (unbeknownst to me…I know, stupid, but I didn’t realize those things could make noise) and the other kids were blowing them like crazy. I finally had to put a stop to it and they were kind enough to stop it for him. He took refuge with Grandma, snuggling with her for quite a while when everybody else finished eating the pizza.

Time for the cake!

Grandma & Grandpa gave him a Caterpillar backhoe like Grandpa drives and Zane had fun driving out at the farm.

There was also a completely unplanned “Star Wars” theme to the gifts. We gave him a Star Wars lego game, Robert’s family gave him a comic book and action figure set, and Grandma & Grandpa gave him a few action figures.

He got two games; the First Star Wars Lego game for GameCube (he enjoyed the 2nd version a lot) and Wii Mario Party 8, the game he wanted so much.

From Grammie Z we got him a block set. It reminded us of a big version of the blocks we brought back from Germany that he adores, and he loves blocks. It is a gift that remains in our living room and both of the kids, but especially Zane, really love building with them. (FTR, we chose the gifts from Grammie Z for Birthdays and Christmas from a generous gift certificate from her. We tried to choose more heirloom type gifts from her, especially for the birthdays)

It was a good birthday party. Zane wasn’t feeling his best…a combination of the week off schedule and a tummy thing he has had going on all week that seemed to really get worse starting on his birthday. He did enjoy the day though, and when weather looked like it might delay the party, he insisted we still held it. ( a good decision…the weather cleared and he was much worse the next day).

I can not believe he is seven. It doesn’t seem real. Seven sure isn’t what I thought it would be when I held him in my arms that first time, but it is precious none the less.

posted in Autistic Life, Birthday, Friends, The 2 Opas (J's Parents), Zane | 3 Comments

26th December 2008

Boxing Day

The day after Christmas was warm and windy. Zora wanted some bubbles, so Zach went out with the kids and enjoyed the weather.

In the afternoon we discovered that Gamestop had Mario Party 8 (1 copy) and a used Wii Fit (1 copy) so Zach rushed over there, stood in an insanely long line, and made it to the front of the line with nobody else requesting the WiiFit (it was behind the counter, first come, first serve), so we got it for $80! Woo Hoo! Zane has been requesting Mario Party 8 since before it came out, and that was the whole reason he wanted the Wii (we told him we couldn’t get it unless we had a Wii to play it on). We had an older version of Mario Party for his DS, but hadn’t found a Wii game for his birthday, so at the final hour we were able to get his dream gift.

Late afternoon Robert brought his boys over to play the Wii. The had a ball boxing each other (on “Boxing Day”, how apt) and then we broke out the WiiFit and made avatars for everybody (except me…no way was I going to be weighed in front of a roomful. I did it later instead). Later in the evening Zach and Robert were boxing and had the unlikely occurance of both knocking the other person out at the exact same time. It was classic.

We have played the Wii every day, and both Zach and I have been sore from the WiiFit. Sad, but true. I wish we could have gotten it sooner (we wanted it last Christmas), but I am so glad we got it now. There is nothing in the world cuter than watching a 3yo wiggling her little tush on the balance board to make the little Mii (avatar) ski, or see her trying to do the yoga moves. Zane is really enjoying the games too, and I noticed that if he flaps, it messes up his balance (on the wiifit games) and actually saw him stopping flapping to play, even though he is still totally excited. It will be interesting to see if this helps him learn to control the flapping when he is excited.

posted in Autistic Life, Friends, Play, The Kids, Video Games | 2 Comments

25th December 2008

Christmas Day!

Santa Came!

Discovering the stockings

In true Zane style (and Zora follows his lead on this), he explores each thing before moving on to the next thing. It is really nice that they savor each gift, but means there is no frenzied gift unwrapping, and it takes him a good hour to go through his stocking alone, longer if we didn’t encourage him to return to the stocking. The main gifts take about a half hour in between each gift most of the time.

Here is Zane enjoying the sparkly spinny thing at the top of his stocking. One of those toys that seems were made for autistic people.

The stockings disasembled

Grandma, Grandpa and Steve arrive and we pull out all of the snacks. Since it takes the kids so long to open things, we decide not to have the meal sitting around the table, but just enjoy the snacks until the Six Cheese Crabmeat Lasagna is ready and eat at our leisure while watching the merryment.

The gifts from Grandma and Grandpa. Beautiful musical snow globes. The both loved them, and Zane put his up on the TV stand and stopped to look at it througout the afternoon. They both play “You are my Sunshine”, a song my mom always sang to me, and I sing to them. Perfect.

The gift that made Zora clap with happiness, a Mustang from Uncle Steve.

Of course, it takes a mechanical engineer and a set of tools to get it out of the box. (good thing we have both)

Zora got some “Fancy Nancy” books and dress up clothes. Instead of putting them on herself, she wanted to dress daddy in them. He was ok with the tiara, but drew the line at fairy wings.

Zane examines the Mario Bros. Monopoly game (he also got a Labryinth game that he studied for a long time)

A little food break here:
Six Cheese Crabmeat Lasagna (we used to make it as Manicotti, but Lasagna is much easier)

The snacks, including some Cheesy poof things from Hillbilly Housewife…they were the texture of pie crust, with a lot of cheesy goodness. I think if we would have frozen them first they would have been more ball shape, but they melted before they got a crust on them so they looked more like cookies. You can’t eat just one. We also had some bone-in ham (made last night), summer sausage, cheese, bread, crackers and the requisite candy and cookies. (not pictured, the green beans how my grandma made them, with bacon and flour schmutz.)

We also had a cherry pie. I was planning on sending cherry pies home with people, but for some reason, only one of my five pie plates were in the cabinet. (all of my guests seemed to remember that they were in their kitchens, after previous pies sent home), so I used a big pan that my mom sent with us one time to make the last “pie” with all the crust on the top. lol. She didn’t seem to mind taking her pan home “dirty” at all. We also made three batches of fudge and sent home a batch with each family.

Both kids got Morphibians, remote control cars that can, theoretically, handle water. Zane played with it later, once it was calmer, but Zora was ready to dig right in. If it didn’t listen to her, she would scold it and point which direction it was supposed to go, and then pick it up and move it. Grandpa and Uncle Steve helped her learn how to steer it.

Finally, we got to the big gift. I was taking video so there aren’t any picture of opening it, but it was a wii, some accessories, and a few games. Zane was VERY excited. Zora kept thinking every package was meant for Zane and would deliver the item to Zane with a “here ya go Zane”. We played Mario Kart and some of the Wii Sports game it came with. It was a BALL! We have played with it every day since. It was a hoot to watch people playing, and we spent the rest of the day taking turns on the wii.

Steve’s gift to Zane was “Paper Mario” for Wii. When Zane opened it, he actually commented ” Awesome!” after opening it, the first time we had ever heard him say that. He was VERY excited about the game.

Not pictured directly (although probably in the background) are the gifts from Grammie Z: a Breyer’s stable/cafe (yeah, weird combination, but Zora loves it) for Zora, and the “Outbreak” game that Zane has been eyeing for several months.

An incredibly fun Christmas for all. One of the most relaxed Christmases in recent memory.

posted in Autistic Life, Christmas, Extended Family, The 2 Opas (J's Parents), The Kids | Comments Off

  • Zane's age

  • Zane is 15 years, 9 months, and 21 days old
  • Zora's age

  • Zora is 11 years, 9 months, and 25 days old
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  • A nation that continues year after year to spend more money on military defense than on programs of social uplift is approaching spiritual doom. — Martin Luther King, Jr

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