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  ...