03-30-2011 Update

03-30-2011 Update

We went to see Tessa last night. It went very well.

Tessa was very calm and went about her business mostly oblivious to us, which was in its own way both reassuring and sad at the same time.

Julie had brought her some markers and notebooks. We took Tessa up to her room and she immediately started her routine, tearing the front and back covers off and then coloring methodically on each page. Sometimes when she does this she seems obsessed with it and will continue for literally hours but last night she seemed very content to do it for a while and then move on to watching videos on her PC. She just had a calm and unhurried attitude that is pretty rare for her.

We took her downstairs so she could take her evening medications. Tessa held and drank from a glass (!) with watered-down Diet Coke and took her medicine without fuss.

Then Julie took her to the bathroom and she went upstairs and crawled into bed. We kissed her goodnight and after talking to the house mother for a while, we went home.

Rewind: The 'moment' for me was after she took her medicine and walked back into the dining room. Julie was in the bathroom telling Tessa to "come in and go potty".

Tessa paused next to the door leading out to where she knew our truck was parked. She made a tiny little sound. My interpretation of her actions at that moment was 'Come on, can I go now? Can we be done with this? Let's get my stuff and end THIS, whatever it is. I want to go HOME to MY room and MY bed and MY life. THIS experiment, whatever it is, is NOT MY LIFE. I WANT MY LIFE BACK! WHY CAN'T I HAVE MY LIFE BACK? I'm tired of the watered down drinks and no YouTube and this strange house. You remember, Dad, how it was? My LIFE? Just a few days ago? What we all had together as a family, OUR THING? I want THE OLD WAY, I WANT MY LIFE BACK!'

Thank God she only paused for a second and then moved on to the bathroom where Julie was waiting.

When Austin was born I remember there was a process I went through that really hardened my heart. Initially when we learned that Austin had Down Syndrome there was a grieving process that we experienced. It's painful emotionally to consider that your child wouldn't grow up to drive a car, have children, be able to live independently, etc., like other kids.

The first realization of these facts is excruciatingly, even physically, painful. But the second time you contemplate the challenges your child faces, it becomes a tiny bit less painful, even if you don't realize it at the time. Each successive time you consider your child's future two things happen: it hurts a little less AND you steel yourself to the prospect.

Eventually you evolve to a point where you mostly just don't let your mind go there AT ALL. It's just too painful plus there's no upside to it, for you or your child. And that change hardens you. And while you can empathize with other peoples' similar experiences down the road, they don't affect you as profoundly, because you have already been THERE and it's changed you, forever.

Other people probably think you are cold or unfeeling but the fact is that you can't do anyone any good if you let yourself go THERE. Not that you don't sometimes let yourself slip into that mindset but you know that there's nothing to be accomplished by allowing yourself to wallow in the sense of loss, the anger, resentment, and bitterness.

So with Austin I trained myself not to go THERE and when Tessa fell victim to autism the lesson was reinforced.

The hardened heart is pure survival instinct. You cannot move forward without it.

I can sit around and wring my hands about Tessa's plight but what good does that do Tessa? And what good does it do me? Julie? Austin? None, none, none and none.

When Tessa paused last night, I really NEEDED that hardened heart because I must tell you, I really, really, really wanted to GET ALL HER SHIT and GET HER THE HELL OUT OF THERE. I wanted so badly to end the 'experiment' and take my little girl HOME, to her REAL HOME, where Julie, Austin, Tessa and I have OUR THING, our lives. That's all I could think of. But Thank God the moment passed. Because while my heart broke, my mind made my body do the right thing. Which was absolutely nothing.

Anyway, not to be Stevie Downer or anything, but those are the real, raw facts. I guess I could lie and say it wasn't like that for me, or just not mention that moment, but I feel there is some real value to me in acknowledging the emotions and moving on from there. And hopefully there's something to be gained by my sharing this with you.

The upside of the callous approach is that it (hopefully) lets you do the RIGHT THING instead of the thing that you WANT to do, which may be the WRONG THING. The callous approach potentially brings reason and sanity to your decisions as opposed to following your heart, which would often ultimately bring disaster. And the callous approach allows you to be POSITIVE about what POTENTIAL there is for your child, instead of the defeatist, fatalistic view that your heart projects on the situation, all the while it's breaking in half.

I have no doubt that there is a parallel thought process for parents of 'un-challenged' children, albeit on a different level.

I have to admit that at the time Tessa was hesitating, I heard a little voice in my head that said "WTF are we doing here?".

One day at a time, one foot in front of the other...

All in all, last night was positive, even if that one moment does still nag at me, and will forever.

More visits coming up and the target for her Bauer Court visit is 4/16.

03-29-2011 update

03-29-2011 update

We visited Tessa Saturday night.

In what may be the understatement of the year, I'll say that it was great to see her again.

We hung out in her room with her. She had managed to "hide" all her videos on her computer, so I got those restored. Compulsive clicker she is, and she keeps clicking until she messes something up. Anyway, she popped right up when I got the videos playing, like she had been without them for a while. I left a note for the staff on how to restore the vids next time she wreaks her havoc, because God knows she will, the little shyster!

We all had a great time bonding with her. She was hugging and kissing us like crazy, not in a desperate way, in more of a playful way. The good part was that she did NOT bolt for the door when we arrived, like she wanted us to take her home.

By the time we got there it was close to bed time, so we stayed a while and Julie gave her her medicine. We stayed while she fell asleep, then we left.

We all are still struggling with it. Austin lost it a couple times after we left. We had caught him a couple times just standing in Tessa's room at home, evidently contemplating his loss. It has hit him really hard.

But I think it's getting better. We got a good report yesterday. Evidently she's expanding her horizons, liquid-wise. She drank iced tea yesterday (!?). The agency is recommending that we don't bring her home until the weekend of April 16th, and we intend to comply with that request as they should know best. This week she's on spring break so she's going to the agency's workshop instead of going to school, and that seems to be going fine. Next week she'll be back in school.

The agency also thinks that we should leave her in school NEXT school year.

We're going to visit her again tonight. Julie thinks if we go just before bedtime it won't really occur to her that we're leaving.

One day at a time, one foot in front of the other, and hopefully it gets easier as time goes on.

Thanks for checking. Have a great day!

03-26-2011

03-26-2011

Tessa has been at her new home since Monday evening. It seems to be going pretty well.

On Wednesday our niece Jori drove her kids past Tessa's new house as the kids hadn't seen it. On their way back they saw Tessa's bus coming back from school so they turned around to watch her. Tessa got off the bus and bounced into the house, seemingly happy to be "home".

Jori and her daughter Hallie burst into tears at the sight of Tessa 'all grown up'.

Thursday we had her annual review at her school. We did not see her, by design. It's not clear at this point if Tessa will be there after this school year. Tessa's teacher got teary eyed after her report and said that Tessa will be missed. Tessa's art teacher was emotional when presenting some of Tessa's paintings to us. She gave Julie some old pictures of Tessa from years past. That made Julie cry.

Everyone had nice things to say about our daughter. The school district special aide coordinator, who has a special needs child, got emotional discussing our decision to place Tessa and talked about her dilemma in considering placing her own daughter.

Everyone was supportive and gave very good reviews about Tessa. It has been extremely gratifying to know that people genuinely care about her and have prepared her well for her adult life.

Reports from the house have been very good. Tessa seems to be adjusting very well. It has occurred to me that maybe we needed her more than she needed us. The only real issue that there seems to be at this point is that Tessa's fluid intake is down due to her refusal to drink anything other than Diet Coke. I have no doubt that they will figure that out.

While it's been a heart breaking experience in many ways, I am encouraged to think that Tessa will do fine without us. She's got a lot of life left and her parents won't live forever. I am happy that Tessa can adjust to a new environment and carve out her own niche. That is what this whole exercise was about, after all.

Julie has been riding an emotional roller coaster. She's working on leveling out.

Today we plan to finally visit Tessa for a little while.

I ache to hug her.

03-21-2011

03-21-2011

Tessa has her own pad:

We discovered after we took the pix that somebody finger-smudged the lens... so some of the shots are blurred.







When we left she was playing videos on her computer and coloring. Having a great time. Parents.... not so much.

03-20-2011

03-20-2011

I have been avoiding writing my 'blog. I've done a cursory update on my pet scan results and also I posted a 25th wedding anniversary spot. But I have purposely avoided writing what's been going on in my (and my family's) world.

I've been avoiding it because it's just too ---damned painful. But I feel like I should document what's going on in my world, because it gets right to the core of me.

My daughter Tessa is 19 and autistic. We have decided to place her in the care of an agency. She will not live with us any more starting tomorrow. It's gotten to the point where we are really not able to do any more to help her in our home setting. We're not able to provide the structure and regimentation that she needs. This decision was, as you might imagine, one of the most difficult decisions in my and Julie's life. She will always be our sweet little "baby girl" and we love her dearly.

And, speaking for myself here, I can't help but feel guilt and failure. I can reason through the whole issue and logically come to the conclusion that there really wasn't any more I could do. But my instincts as a parent suggest otherwise.

Tessa is a sweet, lovable little girl who will remain forever young. She needs more than we are able to provide for her at this point. Our hope is that Tessa grows as a person and is able to do more things for herself and interact better with others. We have visited the house she's moving to and feel very good about the staff and the setting. The staff has told us that the other girls that Tessa will live with came to them with a lot of the same issues that Tessa has. They are confident that Tessa will find her niche and be a happy and fulfilled young lady.

Parents want their kids to be comfortable, safe and happy. They also want them live up to the best of their capabilities, whether their child is supremely gifted or profoundly challenged. I would give my own life, in an instant, for Tessa to be able to be like most other 19 year old girls. But it's just not in the cards. So the next best thing I can do is to help her live her life to the fullest. And I do want her to have her own life even though it's killing me (and us) to let her go.

Everyone that we've told has been very supportive, and we are very grateful. THANK YOU! We have had terrific support from family and friends.

It's been a gut churning experience, but we've gotten to the point where we've acknowledged the inevitable: we just need to get her moved in so we and she can move on to the next stage.

We are very lucky that her new house is just 2 miles from ours. After she gets settled in, we can visit any time.

It will be very easy to have her home for weekends and holidays. Those are all things we're looking forward to.

But the big ugly part of moving her out of this house and into her new house looms over us. Tomorrow when she returns from school we will take her there to start her new life. We are all dreading it.

Kids grow up and move away to college, or move out after finding a job or after getting married. In some ways this is similar. But in other ways it's different. Tessa can't tell us if something's wrong. We can't call and talk to her on the phone.

I was just thinking how the four of us have been a team for 19 years, since Tessa was born, and now the team is breaking up. It just feels wrong and I can't help but feel sad about it.

Hopefully in a few months we'll feel better about this.

But right now it just hurts like hell.

The Ides of March, 1986, 2011

The Ides of March, 1986, 2011

25 years ago today a crime was committed in Somonauk, Illinois.

The crime was first degree marriage. Here's a picture of the crime scene:

(You should be able to click on any picture to zoom, makes it easier to make fun of the hairdos)



For richer or poorer (she got the poorer)

In sickness and in health (she had to deal with my sickness)

Til death do us part (I've done 25 years. I could have murdered someone and probably would have been paroled 5 years ago! Does that seem fair?)

Mugshot of the Happy Lovin' Couple, 3/15/1986:


We haven't changed a bit and I can prove it. Here we are today, 3/15/2011:


We look exactly the same, huh?

So to celebrate, we re-assembled the wedding party. Well, we KIND OF re-assembled the wedding party. The only one who would be associated with us was the Junior Bridesmaid, our beloved Jori - extreme left in the group picture above.

(And for being such a good Junior Bridesmaid, we hereby promote Jori to Full Senior Bridesmaid, along with all the honors and swag associated with the title. Hear, hear! Long overdue.)

We had an anniversary breakfast (wow!) at a local greasy spoon.

And then I went to work.

Julie went shopping.

Some things never change.

Since that fateful day, we've had 2 apartments and 2 houses. Untold numbers of Fords, Chevys, Mazdas, Mitsubishis, Isuzus, Jeeps... 2 wonderful kids. 5 presidents, 8 employers. Unemployment. Cancer. Good times. Dark times. Family members have passed on. Friends have come and gone, some have come back again.

300 months of life have rained down upon us.

We're still together.

For me, it's been a great ride, with the best wife and best mother for my kids I could have asked for.

If I were doing it all over again, I would. Do it. All over. Again.

I hope she would too.

Lovya, Julie!

Petscan results; all good!;