CRASH!!!!!!!!!!!

Stop the world, I want to get off. The rate at which it is spinning is beyond what I can keep up with.

I was caught, rather off guard, when yesterday, with the normal craziness ensuing, I crashed. Tears running with almost no impetus, feeling despair, my blues and seasonal depression had turned categorically into something different. I was most confused by the timing of this event - nothing specifically had happened. In fact, it was our normal lunacy which I will go into below. Steve finally summed it up best I think when he responded with my what is happening remark with a - "You are spent."

I was recently asked by someone if I worked full time. I had no patience with this question, and said "I work more than full time." I knew what they meant, but I am really tired of SAHM (stay at home mothers) feeling the implication of their work not being significant on the mere difference being that we don't get a W-2 for it come time January.

Amongst the craziness now: I finished taking a class on tax preparation and found out that the job pays $8.50/hour. Seriously??? I knew I wasn't going to be making the money of my old electrical engineering days, especially for just working part time seasonally, but I found this a little too little.

The holidays are always a pressure cooker. So many expectations, so much work to try and meet those. Getting out shopping is one of the most difficult things for me. I have to be present for the therapists, and then there are those pesky after school activities, doctors appointments, and other commitments.

Can't I catch a break? Well, no. Our respite night was canceled due to weather and I was so-o-o looking forward to doing the shopping then. Did mention the 4 feet of snow we got in a week?

Speaking of things canceling/leaving/not happening: The medicaid service coordinator called - she is leaving us. Yes - Zach has supplemental insurance of Medicaid. There are major layoffs at the state level for the DSO. We have yet to get anything more than 3 copays paid for a grand total of $30 by the plan. Hee haw. Need I do the math to discuss our personal costs? Doesn't seem like it matters anymore, or that it ever did for that matter.

My mother - well she is not feeling as well as she has been. A trip to the neurosurgeon showed that the tumor on her spine (noncancerous meningioma) has not changed - so that is likely not the cause of her discomfort. Two cysts on her wrists will be attended to next week - along with the what the oncologist believes to be skin cancer on her legs. When she told me this - I knew that I was the only one she had told. A question to my sister and I realized I was correct in my assumption.

Many events to take the kids to - Lights on the Lake, Santa party for at a bounce house, holiday get togethers. There is this sort of pressure to get Zach out of the house and socialized. Therapy is going fairly well, but Zach has begun peeing all over the house. Is it behavior? Is there something medically going on?

Sophie - they have begun some interventions in the classroom - have I gotten in to see them? No. Flushed with guilt. However, we have been more attentive at home with drills and working on reading skills.

Keeping Zach's program rolling is fairly time consuming - lots of paperwork and administrivia to manage his program. 7 bodies walking in and out of the house on a daily basis.

Sleep - well what can I tell you. It could be worse, I suppose, but it also could be better. I have a call in to the GI doctor to make sure they are OK with me giving melatonin to him. I think I am ready to try it. Some say it works wonders....

I miss my Dad. This is the time of year when he had his heart attack. We were all out at a bar in December together as family. I remember every minute of it. I would give anything to see him. Especially with my children.

A recent event for parents wasn't even a break - as we entered a comedy club to take in the show, I see the guy who sexually assaulted me as a teenager. I have to sit there through the event and pretend to enjoy myself. We drove a friend, another mother, to the event. I just wanted to hightail it out of there - and she wanted to chit chat with the other parents after the show. I didn't even tell Steve until we were on our way home. As much as it was a shock to see him, I realized how it paled in comparison to some of the stuff we have been going through with our children. However, I also realized that, for this woman, some things will always stick with me.

The Christmas party for Steve's company was another awkward occasion intended to be fun - after all they did lay me off. But I actually had a lot of friends to talk to and I am so happy that things have worked out they way they have.

Now amidst all the negative, Sophia, Babcia Morphet and I had a fantastic trip to the Big Apple where we saw the Rockettes and ate dinner at the American Girl Doll store. It was phenomenal.

The basement, while going somewhat slower now, is nearing completion.

My scare with a heart murmur/mitral valve prolapse has been put to rest.

This is our normal hectic life though. Why the crash? I have no idea.

Zach had a great day of therapy today. The tears aren't flowing as readily today. Is it based on what he is up to? I realize, only a little.

No time for a breakdown at the Morphet house. In the words of Dory from the moving "Finding Nemo": "Just keep swimming." I have Christmas shopping to do!

Zach had a no mistake day so far today in the potty training department. He also made some progress in learning how to play Candy Land. His chewing gum is going great! Hilary said he mastered some more of his programs - I haven't been able to check in awhile to see what he is formally working on. Suppose I should check his program book at some point over the weekend. No breakdown today. No tears at the thought of all that is going on.

Why yesterday? I don't know.

Looking back at all that I have just written, I am amazed how much hurt and disappointment I have had to face in my life. I am even proud of how I have handled it, or at least how I persevered through it.

When I think about it, I don't cry that often, especially compared to some of my friends. Maybe that's what happened, I stored it all up for one day. CRASH! Even the word mustard would evoke tears.

Gum

Some posts are just going to be simpler than others. But something really surprising happened this afternoon.

Zach has been watching Sophie and I chew gum, so we gave him a piece yesterday, to which after 5 minutes of chewing, he swallowed. I told him "No swallowing! Spit! Spit it out!" I gave him another piece and only allowed him to chew it for 3 minutes, closely monitoring him, and Steve prompted him to spit it out and he did.

Cut to today. He requested a piece of gum. I gave him a piece and set the timer to ensure I could prompt. He walked over to Steve and on his own spit it into Steve's hand. He then requested another piece. I let him chew it for about 10 minutes, and then I asked him: "All done?" which he responded with a : "All done" and he spit the gum out again. My kid can chew gum! Cool!!!

So this probably seems like not big deal to some of you - but it is really cool I assure you. He got the concept while having limited language skills.

Now this brings up a concept that I might not have touched on before. When Zach attains a skill like this, I am sort of impressed with him - I know he is a capable kid (I have to admit something pretty pompous) I am in fact impressed with Steve and myself for figuring out a way to teach him. I am like "Oh my - we did that!? " You see if we were to translate Zach's disorder into something else, that might make you understand our situation better, so let me try.

Suppose Zach was blind - and I need to teach him to read. Now here is the kicker: Braille has not been invented yet. That is exactly the point we are at with Zach - we do not know quite yet what will work to teach him things, yet we know he is teachable- there are some best practices but no empirically proofed standards in this stuff, with the exception of ABA which really offers you a model of how to see if something is effective more than to provide the means to be effective. We don't want to just "try things" because that can take time and if it doesn't work in the end, then that is wasted time. We try to be as judicious about our approaches to teaching him as we are to everything else. Sometimes there is an element of flying by the seat of your pants in this stuff - we are, after all, in the wild wild west. That's what happens when science hasn't come to any decisions. (Sometimes I feel as though science has totally failed us... but that is another topic.)

But for today, my Zach chewed gum appropriately. Pretty cool don't you think?

Now that whole potty thing..... in the words of Charlie Brown "UUUUGGGGGGHHHHHHHHH!"

There's something going on up there

Had a few friends over for a playdate Saturday. Zach, being the social animal he is, promptly took an hour nap. OK. So little K (born three weeks before Zach) hung out inside with sleeping Zach and Steve while us girls headed out into the freshly fallen snow to make snow angels. OK - so I didn't get down into the snow myself, but I watched and cheered everybody else on, so that should count for something.

We eventually came in from the cold and I made hot chocolate. Zach had woken up at this point, and basically spent the afternoon watching movies with K while the girls ran around the house doing various things.

It was time for my friend to leave with her children. They were putting boots, coats, hats and mittens on and Zach began to cry, a wimpery "I'm sad" sort of cry. After asking him what was wrong - offering him food and drink and toys, I realized he was very sad that they were going. I tried to pacify him and told him that they would come back and that maybe we would go to their house sometime. I don't know if he understood what I was saying, but I cuddled with him and continued to console him and eventually he got over it.

A week ago, while watching a Thomas the Train video about Christmas, he began to cry. He just happened to cry during a very melancholy song in the video. I thought to myself, the song is sort of sad sounding - could he be responding to that? I said it aloud and Steve said "Yep - he cried during this song yesterday too!"

Steve snapped at him the other day for making a mess, and off he went to cry for a minute.

I wish I knew what he was thinking/feeling. His often aloof appearance is a big coverup to a lot more going on. I often don't consider enough that he needs to be treated like the thinking and feeling person he is. But he does. He understands far more of this world than I realize.

Being a person of science (or with some science background) I am constantly looking at the action/reaction in things. The problem is the latency factor with some of this stuff - you may not see that reaction for days after. And sometimes it is immediate. His receptive language is much better than expressive.

I can best summarize these experiences best by saying that there is something going on up in that ol' head of his beyond what he can express. Will he be able to let me know one day?

Where we are right now: Acceptance???

I guess sometimes I feel like we are going no where fast. And all it takes is one reference point to let me know how wrong I am. We had Zach's 6 month appointment at the local developmental pediatrician this week. We brought along a therapist to discuss Zach and to meet our doctor.

Zach was a little antsy, but all in all, exhibited good behavior. One thing plagued Zach though. Although his appointment was at 9:30 in the morning, he had already had a 1/2 hour of OT and an hour of speech therapy that day. Due to our hectic morning, the boy had only a quick breakfast, and now he was HUNGRY. So he went rifling through the tote bag I bring along whenever I have the kids, looking for good eats while the nurses asked their routine questions. At some point, he ate every pretzel in the bag plus a brownie. The little one with the big appetite was still hungry. And then the doctor came in. I knew that Zach's concentration was on food and he was going to be fussy unless I managed to get something else to occupy his mouth. I pilfered my purse to find an organic lollipop. I did this all while attempting to answer the good doctor's questions.

We were talking about Zach and his program change from a preschool to a home program. At our last visit with Dr P, we had discussed looking into options where Zach would have preschool 1/2 day and itinerant services or somehow finding him a one-on-one aide for his program. As most of you know I just didn't seem to be able to make either of those options happen. As I discussed how we were doing pretty well with his home program, Zach continued to hound me, and I continued to unwrap the lollipop.

As I held the lollipop just out of reach, Zach made eye contact with me; he realized I was going to make him request it, and not just give it to him, even in the midst of being busy talking to the doctor. He said "lollipop" which I didn't accept, and then I continued to hold it and he finally said: "I want lollipop." and then I quickly gave it to him. I brought my attention back to the doctor who had a look of surprise.

I had no idea why he looked surprised. And he said to me "Did Zach just say a complete sentence?" and I said "yes". He then replied: "Well, I would say that it is quite a change from our last visit!" I hadn't thought about it, but it certainly is. Now mind you, this is something we work really hard on with him, and I guess knowing how much work went into this, I sort of don't find the enthusiasm that others might in hearing him utter this. I also know that he does not freely speak and that he only has a few sentences at this point in his repetoirse, all that have been discretely taught to him. He has surprised us with a few spontaneous sentences, but they are rare and not consistent.

Sometimes I let my expectations get in the way of the joys of the progress we have accomplished. This tends to diminish my hope, when it really should be a catalyst to it. I am so glad the doctor made me aware of this.

Tonight, I "caught" Zach with a book in his lap - a Thomas the Train book of course (what else would he choose for himself???) and he sat there saying "Thomas" "Percy" while pointing to them and spelling out some of the words aloud on the page. A myriad of thoughts went through my head, two images struck me the most: I thought about the expression on the doctor's face and recalled the fear we felt 2 years ago. I realized there is joy to be had in what he has accomplished and the potential that may one day be.

I think about what I want for Sophia. It is certainly different than what I would have wanted for her before we went through all this special needs stuff. I truly want Sophia to be happy. I also define achieving this happiness a lot differently. I am much less practical about it, yet more down to the basics. Practical worries? College tuition, career choices, number of friends, romantic interests. The things I strive for now? People to love and who will love in return, satisfaction and acceptance of who you are, gratefulness for being alive, a work ethic, food on the plate, a house over the head, clothes on the back and having things you enjoy in your life.

Sometimes I wonder if I have reached this place called acceptance I hear about. I am still hoping for everything, but I also know that my son's smile and his love of life have brought to me a peace that I never thought I would have. Is that acceptance of Zach's disability? Well, I think he will always have autism. But I will always try and treat it too. I will never do nothing about it, that just isn't part of my personality. But I think I do understand that those basic things that I referenced before really are what are important in this life. Maybe that is what acceptance really is; realizing what is important in this life.