Day one without him, can I get a bone?

Wow. Life seems so surreal lately. I kept on looking for him all day long. When I went to go get the mail, I began to call to Buddy like I usually do as he loved to run outside in the snow as I walked down the driveway. He did this just Saturday.

Steve and I discussed what's next. We both agreed - no pets for awhile. Steve is pretty wounded by this, too. What a kidney punch after all the other punches we've been taking lately. Nothing to kill us, just enough to make sure we really feel it.

We discussed our childhood pets, and Steve recalled that 2 years after his dog Shep passed, his folks came home with Rusty. He could still recall being angry at them, as he felt that there could be no replacement for Shep. This is why I love Steve, and why we belong together. Once we allow another soul to enter our heart, it can never be replaced, but there is always room to add more. So one day, there will be another dog, I am sure. He won't be Buddy. He won't mean the same to us, but he will be loved nonetheless. Someday.

Telling Sophie brought out a side of Steve I have never seen. Sophie didn't seem too upset though, unless you call asking if this meant she could have a kitty now as a means of dealing with her pain. Still, I know she is still processing it. She told her teacher at her Christmas party today, so obviously it triggered something. What does a four year old understand of these things - what do I understand of these things?

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Zach's class was cancelled today. Speech therapy and OT went so-so. However, he has begun what I believe to be some imitation. During his Saturday class at MyGym, he mimicked putting an item on his head and then "sneezing" (saying "achoo") and letting the item fall off as they do routinely iin circle time. Then, Sophie and I had a pom-pom fight, and he joined in throwing the puff balls around. Yeah yeah. Way to go Zach.

I believe he also accidentally let out an "up" when reaching for me in an effort to get me to pick him up. I have been working on this one what feels like forever. It wasn't repeated, but he did it without prompting - so I am pretty sure it is in there. Come on Zach - give me the Christmas present I desperately want.

Still no report from Yale. Steve called today. Apparently, the professor who did the evaluation was out of town. It might not be here until after the New Year. This is not what I expected or was told, and I am dissappointed. I really need to read what is in that darned report. In the meantime, I am reading "More Than Words" and another book that came last week: "Do Watch Listen Say" .

We are trying to get Zach setup for a school called Jowonio for the fall. Everybody with experience with kids with special needs is telling us this is the place to be for him. Well, 200 other people on the waiting list seem to think it is where their kids need to be, too. uugghh. I am just asking the guy upstairs to throw me a bone on this one.

Buddy Pics

Farewell my little boy

His name was Teddy - but everybody referred to him as Buddy, so sooner or later he became Buddy officially. He saw me through bad boyfriends, my father's death, my marriage, my master's degree, the birth of my two children. In fact, when in labor with Sophie, Steve slept, but Buddy stayed by my side as I timed my contractions. He asked for nothing but some love once in a while. We loved him immensely, because he did the same.

No more fences, no more leashes, no more pain my little boy. Say hello to Morgan and Rusty. I know they'll love having you there. We will miss you so much. Goobye.

Wow, things really stink

So it's five days before Christmas, and I have noticed that Buddy has been sleeping more than usual these past few weeks. Well, then this last week I noticed his breathing has been quite rapid. We were supposed to bring him to the vet yesterday, but alas, the winter storm kept us from doing much of anything.

Today, while I took Zach to his class, Steve took Buddy to the vet. Buddy has the tumor the size of a grapefruit on his spleen. They are not sure if it is cancer or a large blood mass. But either way, he will not survive. They didn't give us a prognosis - but made mention that depending on what he has (the cancer or the blood mass) he likely has weeks to months.

Despite this, he was acting pretty normal. Until this evening. He insisted on going with us to Church (no we left him in the car...) and all seemed OK. Then we arrived home and he refused to eat his dinner. After we ate ours, I took him into the family room to cuddle. After 20 minutes, he got up off the couch and jumped to the floor. He walked around a bit and then he collapsed. We were able to get him up to the mud room where he is now. He won't take the pain pills that the vet gave to us.

So now Steve and I are standing watch over him. He has been a terrific family member and I don't want to see him suffer. I let him know that it's OK and that he can leave me now, that he doesn't have to take care of me anymore. Steve will take care of us now and keep us safe. I love Buddy very much; more like a child than a pet. He has seen me through some really tough times, and taught me not to be selfish. He has done his job.

I ask that God take him in as painless way as possible.

What an absolute tough Christmas this is turning out to be.

We have a lovely home, two great jobs, food on the table - so many things to be grateful for. But when the people (and pets) you love are in distress, none of that other seems to matter. I would gladly live in a shack with the basic necessities if I could have those I love not have to go through all this.

Still waiting

So Babcia (Grandma) M. is back in town and staying with us for the holidays. It is very likely we will once again hold her hostage and help us through the next month or so as we traverse the path of getting the services Zach requires with his new diagnosis.

And that brings us to the report. It should arrive either today or tomorrow. I am dreading reading it, yet am in great anticipation of receiving it. The report contains the findings from Zach's evaluation at Yale. It should be an approximate 30 page report that includes details of his evaluation, their findings, and their recommendations for treatments.

Some of these items we already have begun to work on, as we were briefed while still in Connecticut. One thing we have taken initiative on is getting Zach into a pediatric neurologist to check out his arm tensing (most likely a self stimulatory behavior that many autistic kids have also referred to as a "stim") to determine if this is seizure activity. A study that I read recently has indicated that when there is regression in normal development, as was the case with Zach, their is a higher risk for epilepsy.

Another area we have scheduled Zach for is an ABR or auditory brainstem response hearing test. Since they were not able to 100% confirm that Zach had no hearing loss back in July using the normal sound booth testing, the folks at Yale recommended this. This ABR test, however, requires sedation, and has me feeling uneasy.

Recent research has shown that children with autism spectrum disorder process sounds slightly slower than other children, which may be linked to listening and language issues of children with an ASD. I don't believe that we will be able to get that detailed information from this particular test. But this is interesting, nonetheless. I would love to know why he does not respond to his name - something that can be so very frustrating to me. Will I ever know?

When is that report going to get here!

Rumsfeld

So, many people have tried to show their support of us and we appreciate it greatly. More often than not, people have done what we asked from them, and not dropped us out of their normal world as the people with "all the problems" and "the weird kids".

Sometimes people try and be too understanding. They try and show that they understand what we are going through even though we know darn well that they haven't a clue. For those with children, have you ever had a person who doesn't have children explain to you how to handle your children? People without children make the best parents.

Having a kid with special needs is like that. If you don't have one, you don't get it. Those who thought that their child might have had autism do not understand what it is like to have a child who actually has autism. The fear of the possibility and the horror of actually having it be reality are two different things.

I can recall when I first realized that my fears were no longer unfounded. I would wake up every morning feeling pretty good, and thinking it was just a nightmare. Then as I would get some sense about me, this weight would drop on my chest, and I would realize that it was not a bad dream after all, it was my life.

The hardest parts now are the unknowns. Autism can manifest itself in so many different ways. I like to call it the "snowflake" disorder - because no two kids seem to be identical. This is one of the subtle nuances of the disorder that, I find, make it more difficult. No one knows any child's fate, but it feels like their are even more unknown unknowns with a child with autism. Can research and medicine advance fast enough in his lifetime to effect great possibilities for him?

Zach is only two. I don't think you can get a handle on the personalities and possibilities of any two year old. Surely, Sophie has surprised me with her interests and abilities when I look back on who I thought she was at the tender age of 2. Zach smiles and seems bright. But what things are bubbling in that mind of his that I haven't seen yet? The great unknown.

The Unknown
As we know,
There are known knowns.
There are things we know we know.
We also know
There are known unknowns.
That is to say
We know there are some things
We do not know.
But there are also unknown unknowns,
The ones we don't know
We don't know.

—Donald Rumsfeld, Feb. 12, 2002, Department of Defense news briefing

I just received the book, "More Than Words" by Fern Sussman. It was recommended by the folks at Yale, our SLP, and a few books and websites we researched. Prior to going to Yale, I had already looked into purchasing the book.

Its basis is to help parents promote communication and social skills in children with ASD. Only through page 18 so far. They recommend to read the book in its entirety first, which I plan to do. Thumbing through the book, I notice it gives lots of practical suggestions and explains the underlying concepts along with the pragmatics.

But can I get Zach to say "ho ho ho" by Christmas?