Things That Keep Me Going Part 3: Sharing Joy

I am by all accounts best described as a 77 year old man. Perhaps I was born that way. A curmudgeon. Perhaps I saw a little too much up front and personally a little too young. Pessimism just slipped right in. As much as I am a skeptic, I am not miserable. I am indeed the happiest pessimist that might be.

My personality is probably grating for those around me. In fact, I may not choose to be around someone like myself. I like happy people, people who laugh. I am capable of laughter, although I have been accused of a cackle more than a giggle. But I rarely take pleasure in silliness for the most part unless with my kids. I love dry wit, a good pun, sarcasm. I am terrible at small talk, often bringing the conversation to depths of seriousness not warranted by the occasion. I think for as much as I enjoy fun, I am a rather serious person at heart, and sincere in everything I say to a flaw. As a friend recently told me, I can be a 'Debbie Downer'.

I often catch myself in these depths dwelling far too long. I do not wish to stay there, but often do not have the ability to pull myself out. I see the difficulty, the issues, the work, the potential for problems. I am working on getting myself out of these ruts, but more often than not require the aid of someone else to pull me out.

I don't necessarily need someone to hear me out.  I get tired of hearing myself talk, too!  I love to hear about what other people have going on in their lives - the bad and the good.  I know some people are probably cautious to share with us the events of their lives, I have heard people say they were afraid to talk about their child's progress for fear it would hurt us, but it won't!  I have also had people tell me that they didn't want to share their problems, because they think they are somewhat trivial compared to ours.  Not so!

Extremes are another issue - I really don't want a braggart telling my how perfect their child is and how their child is better than so and so.  Blek.  Always hated that.  And everyone has problems - we all have "woe is me" moments in life.  However, I have known people who get competitive in who has a tougher life, and I think that is just the most ridiculous notion there ever could be. 

I was glad to recently have read the following book: The Autism-Moms-Survival-Guide.  It felt like I was reading excerpts, albeit more articulate and well written, from my own blog.  It felt like having a friend with me. The book was given to me by my dear sister-in-law Cindy and it has certainly been a worthwhile read. 

I have other families with children with an ASD that I stay in touch with.  There are support groups where we meet monthly. There is also facebook, phone calls, blog pages, playdates, autism events, a plethora of ways we connect.  We commiserate, and boy do we. The nice thing about this is when you b*tch to a fellow parent of an ASD parent, even though they might not understand your exact experience, they know the feeling of despair; they don't look at you like you dumped a load of bricks on them, doe eyed with no idea what how to respond. 

But we also share progress and surprises - the joys in our lives.  Sometimes its about our typical children or a spouse, a job promotion, a date- normal stuff, you know?  And I am always so happy for these families - my eyes welled up when a friend told me her kindergartner had a good first week or when another friend of a 10 year old said week 1 at school was rough, but the team her son has is enthusiastic and looked promising.  I get chills just thinking about those words - they may appear as small events to some, but these are huge wins in the world of disability.

But I take joy in those who aren't in the world of special needs too: A niece of mine recently graduated with her graduate degree in special ed.  First of the grandkids with a grad degree.  My other niece went to Ghana to do some volunteer work as a medical student.  A nephew of mine will be taking piano lessons at Eastman as a chemical engineering major.  Steve's cousin recently had a beautiful baby girl.  My cousin is due in a few weeks.  Another cousin of mine posted something simple on her facebook page about her great family and career and thanking God for her life right now.  Love all this stuff!  Life is so fluid, and I love to hear the joys of others. 


Zach's home program is progressing.  We have 5 therapists lined up for him at present. Things are moving right along.  As for his progression - I cannot say much about that - I think I am too much in the thick of it to see what is taking place.  I can tell you that he is saying some new things:  this weekend we kept on hearing "Mickey Mouse" and "tuba" which basically came out of no where for us.  We don't have the Disney channel so the Mickey Mouse thing might seem appropriate but still seems out of nowhere for us.  These words are nothing we are working on.

Last week it was "Oh man", "I see Percy", "Wake up". But there are phrases that we are not quite sure what he is saying, and one of these recently sounds a lot like "Repent!".  I don't know, perhaps we have a televangelist in our future.  It often feels like Zach can only have around 25 words in his vocabulary at any given time, but no more. With the new program rolling along and his upcoming eval, I am hoping to get a better understanding of what is going on here. 


I am not quite sure how to say this - but the home program is a lot of work and is very intrusive into our lives.  Well, maybe not Steve's as much, but certainly mine.  Home is a place of respite for most - but not ours. We are attempting to finish off the basement so there is more room for Zach's therapy, in particular his OT and PT.  Steve and I will be learning the art of hanging drywall and installing floating floors.  Then there is the therapy itself. There is a revolving door of therapists and service workers coming and going.  I have to be honest and say that this is a sacrifice for me without a doubt.  But I keep on thinking it is a short term one - one we hope can make a difference for Zach and his life.  As I go through this really difficult time, I sure would appreciate hearing your stories - good and bad - the connection to the outside world is so important as I live, breathe and work at home now. I especially look forward to sharing in those stories of joy  ...

Things That Keep Me Going Part Deux: Unexpected Gestures

You know that Oprah Winfrey thing where you are supposed to buy a stranger's groceries in line behind you or pay someone's tolls at the toll booth, etc? I really don't know anything about this because watching television hasn't made its way into the Morphet rhythm of life unless it is a Thomas the Train or Tinker Bell video. I have heard some mention of it in the discourse of our lives.

Well, anyhow, the notion of this is a gesture offered to another party just because. The concept sounded nice, but my engineering sensibilities told me that I would be better off just giving to charity.

But indeed, I have been touched by unexpected gestures. In fact, one such gesture was this weekend. But it wasn't the type to keep me going. It was the type that made me want to turn vigilante. If you haven't guessed off of reading this blog yet, Steve and I have the luck of a black cat. Well, you know how they say "The Luck of the Irish"? I always felt that I had "The Luck of the Polish" and one high level overview of the what Poland has gone through since its existence should pretty much tell you that we don't get many freebies.

On the way to the first soccer practice this weekend, Sophie went out to the car with her father to find Steve's car with a vulgar drawing on it and something written that we were unable to read. It was (thankfully?) done in silly string. Steve was irate. There has been an array of vandalism in the neighborhood - and there are a round of usual suspects. They have normally been using spray paint and occasionally blowing out windows so I guess in some ways we were lucky. Having my lovely 6 year old discover this, however, was far from lucky. She wanted to know what it was on the car. And then she wanted to know why someone would do this to us.

Off Steve and Sophia went to soccer, and off I went to document what happened contact officials and the local neighborhood watch group. That's all I do. Paperwork. Emails. Phone calls. This wouldn't bother me as much if it was either more positive or productive, but more often than not they aren't. Faith in God is waning. I am taking every avenue and pursuing it, and with all the leads lately, there has been little success. Make that none actually. I keep on trying, I just don't see why I should believe that God is involved in any of this because all he is doing is giving us a hard time if so. All the hard work with no pay off is lessening my ability to trust others. And I really have been going to ridiculous ends to try and get Zach help (services) with little success. (Another post)

So, why don't I just totally throw in the towel? Because even though the people who should be helping us aren't, there have been spectacular people along the way who have overwhelmed us with the most amazing and unexpected gestures. Good ones that is.

Recently, a dear friend and single mother to a child with an ASD gave us her son's hand me downs. The clothes were beautiful! I cannot get over what a relief it was since I haven't been shopping for clothes for the kids in so long (problems with time and finances....). Zach is set for this fall and winter for sure! Now if only I could find someone to get hand me downs from for Sophie! My mother in law and I couldn't believe how much there was.

Then there has been an agency who has temporarily given us some funding to pay for a paraprofessional to come to our house and help out while we are working out with the school district getting Zach services.

Then there is a dear old surrogate Uncle and Aunt who, after witnessing Zach and the loaned iPad, got him one! This has had such a significant effect on our family. It is just tremendous! I cannot thank Aunt Gail and Uncle Ron enough for this gift. Since witnessing Zach and this device - 7 other families we have had contact with have gone out and purchased these and told us their children are very responsive to them as well. The form factor seems to be making all the difference - they are larger than the iPod which seem to help with motor skill issues. I have emailed Steve Jobs regarding promoting these devices for special needs families - even sent him video - but no response so far.

And then there is a couple in Connecticut, an aunt and uncle of a friend, who will be hosting us when we take Zach to his next evaluation at Yale. Strangers to us, not obligated at all, yet so kind to open their home to us.

All of these gestures are amazing - and have given me some faith in people when I feel like we have been forsaken by so many others. The journey seems so long right now. We are grateful to those who have surprised us with their benevolence. They remind me of the water stops along the road where volunteers hand you cups of water that might not hydrate you fully, but offer you enough to get through the next leg of the race.

Blindsided

So, if the last post has you thinking that Steve and I are on the verge of divorce, don't. We're not. We don't scream at each other. Relative to the amount of stress we are under, I would say we underperform in the fighting category. Steve snips, I yell on occasion. It happens.

This is not to say that Steve and I are so deeply in love that we can conquer anything. I am a romantic at times, and would love to say that is so, but that would be a bold faced lie. The truth is that Steve and I are clinging together out of necessity most of all.

A friend recently pointed out that she noticed that her and her husband fought more when he had a career change that required them to move to a new city. Stress does that to people. And this is utterly the most stressful thing I have endured that has lasted such an extraordinary amount of time.

I recently heard an interview with Michael Eisner, former CEO of Disney about his take on partnerships. He talked about the fact that quite often successful partnerships involve one as the active player and the other as the cheerleader, one role not more important than the other, both could exist separately, but together via synergy, they produce more quality, do their job more ethically, and are able to achieve more than they would have alone. He extrapolated that the marriage model is very much like this in effective unions. He said that you can survive a lot of lows in life if you can never become envious of one another but maintain pride in your partner. I am not envious of Steve - and I appreciate what he does for our family.

I am more proud of Steve than he is of himself. He is a fairly humble guy. And that is why I was so excited when I found out he and his research partner won the Central New York Technology Alliance's Technologist of the Year award. TACNY is a group of around 50 technical professional societies that have a presence in CNY. I am really excited for Steve. Steve believes his boss submitted them for this. Just prior to graduating SU, he likewise won the All-University Dissertation Award for his doctoral dissertation. This recent award made me so happy because I feel that even though I know we have impacted Steve, we haven't killed his career completely. One dead career is enough in the family.

I want Steve to succeed. His success is a win for the family and will only help. I will always looks at my two nieces and see the pain in the eyes as likely caused by their parents' divorces, and I just don't want that for my kids. Steve and I have seen quite a bit these past few years, and we are definitely angry people lately, but not at each other, and certainly not at our beautiful children, although don't ask me that when Sophie starts talk back to me like the little teenager she thinks she is...

And then there is Sophie. Last night was her open house at school. I rushed to get her from ballet, and then to pick up Steve and off to the open house. After the teacher gave us a little discussion on what they are up to this year, I went up to talk to her. I mentioned that Sophia received OT last year and that I was concerned about this year. The teacher said "Yes, I have noticed some things. In fact, the gym teacher approached me about her as well."

My world started to spin a little. As we walked around the room looking at the kids projects, the spinning became faster. Self portraits - oh my. Remember that Sesame Street song that goes like "One of the things in not like the other..." well, hers stood out for sure. I was shocked at the skill difference between hers and her peers. Steve made a wisecrack that at least we didn't have to worry about her being a poor art major in college. By the time we got to the journals, I nearly lost it. How could I have not realized how far behind her fine motor skills she was from her peers? Maybe because I was constantly asking her teacher and her OT from last year, and they didn't seem to think she would have a problem. In one week, her teacher this year already noticed enough to tell me to go ahead and procure what I could for Sophie in resources and therapists.

I spent most of the night up staring at the ceiling. How did I not see this? I asked her teacher last year. I asked her OT. I didn't get into the classroom enough I guess. Her report card was always good. What the heck!

I spoke with Sophie's gym teacher who will be giving me an informal assessment at the end of next week. She said she definitely sees motor planning and transition issues. I called Sophie's developmental pediatrician and laid out what I have noticed and what others had told me. They recommended that I go to the school district and request services and that her quadruple dx should qualify her for OT and PT. Oh - I just cannot believe this is happening. I feel blindsided by all this.

We have yet to secure appropriate services for Zach for Pete's sake!

Did I happen to mention that my mom has a new tumor - on her spine? They told her not to worry about it unless she suddenly can't walk or starts peeing on herself. I wish I was at that doctor's appointment...

Once again, life has thrown us some curve balls and I am trying my best to balance the disruption they cause with the excitement of Steve's award on top of just trying to enjoy our kids. Mom Morphet has purchased a house on the other side of town - around 15 minutes away. She closes on the house tomorrow.

The good with the bad. Need more good. Need more good. Need more good.

Things that take your breath away

A few weeks ago, a friend had us over to swim at her house. We have spent some time over at her house this past month, and the kids swimming skills have certainly increased while doing it.

My friend is a single parent. I have found this event to be so commonplace, that I don't think much of it. And, well, I should.

Well, Zach is quite the little swimmer let me tell you. He loves to put his face in the water and practices holding his breath as long as he can. He kicks up a storm. He has no problem jumping in the deep end and loves to continually practice front and back floats. We have a version of the floaties that allows us to just let him have the run of a pool without worrying about him going under. And, alas, he watched his sister and even started going of the diving board. I always think of Michael Phelps' mom talking about how he was ADHD and how she could use his intensity/hyper focus to an advantage. Will I be able to do that with Zach one day?

Anyhow, on the way home Sophia asked where her son's father lived. We told her he had another home. She then asked why some mom and dads don't live together. I tried my best to explain it, as carefully as I could, but very clumsily. She went on to say that she has heard Steve and I fight, a lot, and she was concerned that it would happen to us. The breath was taken out of my lungs as if I had just fallen out of a 40 foot tree flat on my back. There was no good way to respond to this.

Marriage is tough work. Kids add stress and loads more work. Disability adds immeasurable more work and uncertainty. Dealing with the bureaucracy because of the disability is more work than it took to get the Apollo mission space bound and aggravating. Holy crud it is work.

If there is one thing I know, we must do what is best for Zach. And sometimes that means we must do what is best for the family. Sophia should not be fearing our divorce amongst the negligence she already has to deal with. Steve and I should not be in the state we are.

For a plethora of reasons we have decided to pull Zach from his school program. I am not happy in this decision, I don't think there was a perfect scenario at all. We pulled him for various reasons for him and for various reasons for our family. It was an incredibly hard decision, and has left me personally overwhelmed with emotion and a huge burden, yes I said burden, to make sure he gets some semblance of appropriate services here in the home. This is not his fault. This is not autism's fault. This is mostly the problem with those who should be the responsible parties for getting appropriate services for Zach and couldn't stand up to the plate for us.

I am on the phone or computer nearly all day trying to figure things out. I had no vacation, even though we went away, because of all the calamity with this.

As much as we have liked the people in Zach's program, and thought the program used great principles, it was not intense nor individualized enough for Zach. I often thought if Zach was either lower functioning or higher functioning it would have been perfect. We tried to work things out with the program and the school district, but although the program attempted to make modifications for us, we grew weary as the days were clicking away to when he began, and we had yet to meet personnel from the program. Steve had always wanted me to do a home program all along, and when we were basically told that our wish for Zach to have a 1:1 aid would not be able to be put into his IEP it seemed to push a button for us. The program was going to attempt to staff a position that would be almost like a 1:1, with the exception that it couldn't be written into his IEP, and it sounded great. I think the sad part about our journey into the world of special needs is realizing the necessity to have everything in writing. We have been hugely disappointed on this journey already. A few well intentioned people have made promises that they were unable to keep. And several people on the sly have made promises they never meant to keep. Because of this, we are very gun shy to trust anyone without things in writing. We need to be able to point to something that shows we all agreed to something. We just couldn't be assured that this was going to happen. We need that legal recourse

When we pulled Zach from his school program, we had made prior calls to therapists and agencies to see if we would have a program similar to his school program that could be run from home. This is an extraordinary measure - the school district is responsible for procuring services, but we wanted to help the process along. Well, we have managed nothing for the most part, and although it might have been lack of skill that in the end got in the way, it wasn't lack of trying. People who are in the position to help us are not willing to go the extra mile to do so. That is the hardest part for me to figure out. If I was in the position to help someone out - and I knew I could make a difference in a child's life, I would bend over backwards. In fact, I have done that not only for my own children but for some of the families who I have helped advocate for. And it isn't even my job!

I have had people tell me they want to help us - I tell them what we need help with, they then back away. I offer money and am told they don't want the money - they aren't in it for the money. Sounds unbelievable, right? The truth is, they don't want to help either, they just wanted to hear themselves say they were going to help. Wanting to do something and actually doing something are very different things. The truth is I offer money to everyone who helps us because the level of work needed for Zach is hard. It is tiring. It is lonely. It doesn't get you a lot of praise. It can feel futile at times and let's not forget it can be gross at times. But it's what needs to be done. We all need motivators in our lives to help us get through the tough stuff.

I am saddened by not sending Zach to school. The school had a nice program, it just wasn't right for the level of intensity and individualization he needed. On top of missing some of the great professionals that we had to work with, I believe he liked it. Do you know how hard it was to take something like that away from him? It's kind of like all the food we cannot let him have because we know it isn't right for him. I want to give him things that he wants of course, but I have to deny him those things for his own good. I just wish I didn't have to deny him so much.

Having Zach home has lessened the stress around the house. We are no longer wondering what is going on at school. I feel as though I can follow through with what I should be doing with him better. We don't have to worry about him getting food he should not have. Steve is able to concentrate more on work since he is not helping in the transportation of Zach to school and helping prep breakfasts and lunches.

For me, personally, things have become more stressful. Getting him the appropriate services is extremely difficult. But I keep on thinking that one day I will be glad we did it. He has another 13 years to enjoy the school experience. This does allow some more free time for just him and me, and I look forward to taking advantage of that. I am hoping that Steve and I will eventually be less stressed out, and Sophia will not have to worry that the constant tension in the house means that Momma and Daddy are going to live in separate houses.

Zach has made progress. He is saying more spontaneous phrases. He is learning to ride his tricycle independently. He can identify more objects than before. He is sitting better for stories and helping to point out pictures in books. He is learning to get himself dressed and undressed. Sleep is another story for another post. We are still working on potty training, but can at least claim that he is schedule trained for peeing. I will take that victory, but I won't retreat, I will forge ahead through the smoke cloud.

One day I will be able to breath more freely again.

Quickie

Every time the blog goes blank is usually a sign of one of the following:
1) I am doing my very best to manage through a rough patch.
2) Things are hopping.
3) I have taken up a new hobby such as underwater cat grooming and am totally engrossed.
4) I have taken a Latin lover and am enjoying the Caribbean with my new found friend.

OK. Well, probably not 3. Definitely not 4.

Emotional times for me right now. I have started to write several times in the past few weeks but can't seem to push a post out.

There is vacation, activities, school, upcoming appointments, and changes.

I am, in all likelihood, in need of Valium, but lack the backbone to take one let alone the wherewithal to get one.

I ask for all my readers of faith to send prayers and for all my readers who are not to think of us during this time. It is, for some reason, a very turbulent time for us, even though I am feeling confident all will be well in the end. I promise a good post with the next few days.

If nothing else I will make sure to get pics up. I am sure you would all rather see my beautiful children anyways over reading my revealing yet self-absorbed, grammar faulting, typo laden, incontinent ramblings.