What Get's Me Through: Part 1 - The Gift of Time

I am a boatload of stress. Some of you in my shoes understand why. In all likelihood, some of you think I am overreacting. I can honestly tell you that if I see Zach initiating verbal communication with me and others on a regular basis, my stress load will be divided almost infinitely. OK not really, but it will go down at least 50%. I promise.

I tried to offer my friends with children some perspective: you worry about development a ton in your kids. You compare them on occasion. You may have young children mother regret- you know that 45 minutes you take to drink a cup of coffee and facebook your friends? I know a chunk of you feel bad mommy guilt for sticking the kids in front of TV during this time. You think you should have done something more engaging with your child, that because of this regular indulgence you have taken (that when dealing with your kids all day, may be the only thing keeping you sane) in some level of consciousness makes you feel that he might not take that AP class one day resulting in community college over that private school, or worse, perhaps much worse, your nightmare, your child doling out fries and burgers at MCDs or BK. Oh the horror!!

Well guess what, your nightmare is my dream. If Zach can one day communicate and have the self care skills to manage a job at a fast food restaurant, that would be a major victory. Now can he do better than that? I am not going to lie, I am shooting for the stars; I want that college education and professional job for him. I want as much that is normal to me for him as possible. Why? Is it social status or money? Not really. My two biggest concerns for Zach: I desperately want to relate/connect with him and I want to make sure he is safe and capable of defending himself in a world that can be hostile.

Anything is possible. (Hope) What is going to be is such a mystery. (Fear)

I am a girl with a plan. I can take mystery to some extent, but I want to feel like I have some control over my children's future. With Zach, I feel like it is much harder to feel like I am making that positive contribution. Stress. Every decision we make now feels like it might impact the quality of his life to such an extent that it is the most amount of pressure I have ever felt. So I have written down some of the things that help me to manage through my day without anti-depressants (at least for now), without anti-anxiety med (again, at lest for now), and without turning a complete nervous breakdown (although little mini ones are allowed.)

So I have begun to write a series to help me establish in my upper conscience what is helpful and what isn't: what I am thankful for, what helps get me through the day

Today, my first topic is the gift of time, the #1 offering someone can make to help us out. The gift of time comes in a couple of different forms. Simple playdates with my kids is a really big one. Having us over for dinner is another. Coming to the social events we host is yet another. Calling me up and making me leave the house to do something fun is right up there too.

Playdates with friends is critically important to us - some with kids who are diagnosed, some who are not.

I have a friend whose son is doing well and has a smile that lights up the room. She has always been so gracious to me and my husband, inviting us for playdates or excursions. This woman always is in action , thinking of her son and his diagnosis, referring to professionals, other families, taking classes, signing up for programs, and in the free time, she works with her son. He has made remarkable progress. She is a single parent with no college education, yet I have seen her efforts and she is as intelligent in her decisions as someone with a PhD in child psychology could be. She has impressed me for sure and given me the desire to fight and not care what others think.

Another friend has a son 6 months younger than Zach. They have gone all out in their interventions, biomedical and therapy, and there son recently tested as having no deviation in skills from typical peers. This family has scored a victory for sure, but has also shown me, once autism enters the picture, there is always this fear that doesn't go away. Although he is so capable, Mom cannot get over that he could once again regress. She also shows little fear when it comes to keeping her family operating in this world. She constantly challenges her family taking them out into public spaces with strangers. She is a fierce mother for sure!

Another friend has an older non-verbal son with an ASD. She is stays in contact and frequently tries to get me out of my shell. She is one of the most positive people I have ever met and I am hoping that one day some of that will rub off on me. In the face of adversity, she keeps on smiling and I love that about her. She invites our family over to dine or swim with her and her son. She tempts me with social occasions that I tend to shy away from.

There are those friends who don't have children with an ASD - but keep us in their social repertoire nonetheless. I have a friend who recently had us up to a camp they rented in the Thousand Islands region - and the kids loved it. And another friend with three beautiful daughters who has watched Sophie on occasion, however, recently broke my heart by announcing that they are moving to Albany.

There are those of you who read and comment on my blog, possibly offended at times, but show support nonetheless. There are my facebook friends of all varieties that chat with me and comment on my status.

Some members of Steve's and my family have made some efforts too. It is hard for some because they live far away. Others have disappointed, but I love them anyhow. I am always amazed at how hurt I am when my family doesn't show up to events that I host. I think that I am sometimes oversensitive. I have a hard time shrugging these things off. But I think I have come to some realization that my priorities in life and theirs are different, and I need to find a way, put up some boundaries, so that our differences don't cause us to totally be toxic to one another. Some people would say to cut these people out of my life, but the fact is, I doubt I ever will. It's not my personality. I love them and need to at least know of their journey through life although we might not be intimate the way I would like.

A neighbor talked to me the other night for an hour. She was so sweet and we laughed. She does not know of Zach's dx. She is busy with four kids of her own. She keeps on pushing me to go out running with her and a few other women in the neighborhood. I know she is right. Trying to make it fit in the schedule is another topic. I like that she hounds me about this.

There are likely several other items I could mention, but I think you get the drift. Acknowledging my children's or my presence is a gift more valuable to us than just about anything else. Thanks to all of you who took a moment of time out of your busy schedules to think of us, send us a note, give us a call, send an email, make a comment, etc let us know that you care.

This experience has taught me this:

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”

Zach has given me the courage to deal with things I normally would have avoided all together: take on bureaucracy, ask for help, stand up for what I know is right. I am so grateful for those of you on Team Zach which keep me going on days when I think I have nothing left.

Potty Training Bootcamp

****** WARNING: THIS POST WILL DISCUSS BODILY FUNCTIONS *******
Potty training. We have read a few books about this, and basically decided that the longer we wait, the harder it will be. It is a necessary life skill that above any academics offered, or any other social grace he could learn, will provide the most opportunity for him in his life. I summoned up the courage to make an attempt. Last year's attempt certainly left me a little gun shy. The kid quit eating, drinking, and pooping for 3 days. This was downright scary for me - my child refused water!! But the silver lining in that bad episode was pointed out to me by our pediatrician: The kid was smart enough to realize that food and drink evolve into waste product, and he attempted to take control of the wheel. We decided that Zach knew he wasn't ready.

OK - so as altruistic as the decision to potty train might sound, it also gave me an excuse not to shampoo the carpets in the house for another month or so. Plus, Steve and I had an agreement that we could not have more than one thing at a time peeing on the carpets in the house. So, if we get Zach potty trained, we can start considering that pet dog Sophie and I are gunning for.

I made the decision to proceed, informed his school and his itinerant providers (home therapists) and off we went roughly three weeks ago. The first week was tough, he showed little cognizance of what was going on. We couldn't keep up with the amount of clothes getting washed! Second week, we bore witness to pee entering the actual potty. At the tail end of week 2, we saw way more pee entering the potty than hitting the tidy whities. HURRAY!! Unfortunately, BMs had not been quite as successful.

Until we potty trained I never noticed something so terrific about Zach: he prefers our company than to be by himself. (Weird for an autistic kid, right?) My observation is that when Zach leaves the room from where Sophia is playing or I am cooking or whatnot, that is a clear indication that he is going to have a BM. Such a strange way to find out such a terrific attribute.

But as much fun as this must sound (*sarcasm*), it does come with it's moments. First off, as casual as I am about discussing this, make no bones about it, I do not like to be urinated or defecated on. Oh yeah. Nor do I like being vomited on. Why do I mention this? One afternoon, after Zach's itinerant provider had a good session with Zach, Zach walked up to her and gave her a cracker he had been eating. That look meant one thing. She was oblivious, I was not. I had seen that look in his face before: barf was coming our way. As the running in slow motion has come to be a common event in our house, I got to Zach in time to cup my hands in front of his face and quickly move him over our hardwood floors as opposed to our wall to wall carpeting. And he let loose. As I captured the product, Zach was so startled that he then proceeded to urinate. Wild times, I'll tell you. It reminds me of frat house parties minus the beer and sorority girls.

Then there was the trip home from school where I decided, ignorantly so, to drop off the spoils of our garage sale to our bank. Being that I had a lot of change, I decided to enter the actual credit union as opposed to the drive thru. They have a change counter in the bank, free to all members. As I entered the second set of double doors, I realized we were in trouble. It was member appreciation week, and there were lots of youngsters coming at us asking if we wanted candy, popcorn, or if Zach wanted to play a game. I was flustered with all the unwanted attention, so I can only imagine how Zach felt. As I scurried to the change machine and had Zach dump the change in, I was growing weary already at the fact that we had lots of eyes watching us.

Before y'all rip into me about bringing my potty training/brief wearing toddler into a public space with no capture mechanism in place, I have to plead that I was misled prior to this journey to the bank. When I picked him up from school that day, the TA's told me he had no accidents and did great! Knowing they had just put him on the toilet prior to is release to me, I felt very safe. I was not to realize the truth until I went home: Zach had held his pee for 17 hours. This is not doing great, although it might be accident free. And the story continues...

Back to the bank: I then went up to the island to fill out my deposit slip and a young girl helping out with the bank "festivities" offered to play with Zach while I completed my transaction. Feeling that this may speed up my transaction time, I decided that playing with the Wii within 10 feet of me was fairly safe, so I acquiesced. As I finished completing my deposit slip, I glanced over to the Wii prior to walking up to the teller. And there was that look again along with the leg tilt/knee bend. Once again, I felt like Lee Majors as the slow motion effects took place and I ran to grab Zach. But it was too late. I made a dash for the bathroom and off we went. I took his wet shorts and undies off, cleaned him up, and sat him on the potty, explaining to him that pee goes in the potty, once again. I ran his clothes under water and rung them out.

Then I thought: "What the hell am I going to do now?? I am holed up in the bathroom with my son with autism, with soiled clothing, and a host of bewildered and unamused spectators awaiting for me out in the bank lobby to rectify this situation." I put a plan together in my head, "He has clean clothes in the van." And then it struck me, my van keys were out on the island where I was filling out the deposit slip. Then it really struck me: I had left $500 in an envelope sitting out on the island unattended. OMG!!!!!

Pride has been gone for years. Here goes nothing. I would get him dressed in his damp shorts. Wrap his underwear in paper towel and stick it in my pocket. Head high, I would carry Zach out of the bathroom, make a dash for the counter and grab my keys and envelope and promptly go to the car, avoiding eye contact as necessary. No time to waste, I exited and was given a grace from above. One of Zach's teaching aids was smiling back at me. She said "Hi! How are you?" and then noticed the feared look on my face. She looked down at Zach, and realized what happened. She then asked if I had dry clothes in the car, which I did. She told me, "Go get them. I have him."

That face looked like a light beam shown from up above. Not only did I get a change of clothes and get him dressed. I decided, that I would complete my transaction. And I did. And the tellers did not look happy about it. But I did not really give a rat's patooti.

As we exited the bank, I looked over to the young girl and mouthed "Sorry." She looked back at me and I realized someone had pulled a throw rug over where Zach had done his business. I then mouthed "Thank you" to her. And we left.

Here we are in week 3 and Zach has not had an accident in 3 days. We went to watch the Syracuse Chiefs play last evening and he even did his business at the stadium. We are not out of the trenches yet - Zach has yet to initiate his sessions by notifying me he has to go or entering the bathroom by himself. But this is substantial progress, and has affirmed our decision that it was time for him to learn. It also will be a sign to the professionals out there, that once again, Steve and I were able to determine that Zach was ready to learn something, and not wait for someone else to make the call.

Way to go Zach!

Another Day in the Life of Luxury

It may have been quiet on the blog, but things have definitely not been quiet at home. In fact, things have been hopping so much, a shower is often a luxury, let alone an hour to write down the events of our lives. Lord knows that I am never proud that these posts are far from proofread or edited and my grammar negligence must be patently obvious. Especially becuase I used to be such a stickler for these things. Now, I just don't care. OK not true. Perfection was never achievable in the first place. My desire to attempt to reach it has now faded as well. In the case of my writing, unlike any other event in my life, I have decided to run with scissors.

This is probably a good thing. I am not sure if I was a type A or not, but if I had to wager a guess, I would say that I was pretty close. Life has happened and if I was a type A, you certainly wouldn't recognize it by my current behavior. (Type A referring to personality theory in which individuals can be described as impatient, highly competitive, ambitious, aggressive, having difficulty relaxing.)

Things are falling of my plate left and right. I cannot accomplish much of anything. I am taking each day as it comes, and I am getting the base minimum accomplished. I feel that my attempts at advocacy for Zach has been stifled by an inefficient, ineffective system whose only goal is to self sustain. I also know I have "hit the wall" (runner's speak) in this marathon and am pushing through waters that feel more more viscous than 20 pounds of gelatin in an ounce of water.

In an effort to not feel like I have not totally failed my beautiful son, I have attempted to bring a smile to his face every day I can. This summer we have managed trips to Thunder Island to play at the water park, Wellesley Island to swim with friends at their cabin, the sunflower maze in Camillus where Zach resisted in fear at first and proceeded to run through just about every loop in the bee shaped maze, swimming at Gilly Lake, swimming in our little pool, playdates at a few friends houses, lots of hugs and kisses in between these events and the endless school and therapy.

I have also entered him into Potty Training Bootcamp. (To be discussed in another post)

Sophie has had swimming lessons, ballet camp, soccer/basketball/lacrosse camp, birthday parties, and this week vacation bible school. She has enjoyed our outings and loves spending time with her grandmother and friends.

Amongst all of this, we had a successful garage sale where nearly 85% of our baby items are no longer in our possession. So strange to see them go away. So definite a symbol that our life is in a new phase.