The Mystery

No two children on the spectrum are alike. The snowflake disorder. I forget about that a lot. I like to hear about other children on the spectrum; see where they were and who they are now. "He didn't say a word, and now I can't get him to stop!" is a common line amongst a group of mothers. I sometimes gauged Zachary on those who spoke of their children and their outstanding progress. This is what you do with typical children, you compare, and you realize that little Johnny might not be rolling over onto his tummy today, but the other kids have done it, he will too one day. You can do these comparisons, to some degree or another, when your kids are typical. It is almost natural.

There are those of you who know me in the "real" world to know that I am far from the silent type. I can come off as a know-it-all, and appear insensitive to those around me at times. I wish it were more true than it appears to be. The fact is, when these mothers speak of their children's progress, I become keenly aware of those who stay silent. They don't chime in, their children have never uttered a word, or very few at best. My heart aches for them.

I wonder what team I will play on one day.

We are approaching the one year anniversary - one year of intensive treatment. It is considered a milestone in some circles. There is some research out there that states the progress made during the first year of intense intervention can be used to gauge the child's likely outcome. This is hard. Zach has made progress, but not the unbelievable progress that I have seen and read from other children in similar interventions. Does this mean that his likely outcome will not be the chatter box I hear others talking about?

Another study I read indicated that language progression is not the clearest indicator, and that motor skills, both fine and gross, is a better predictor. I am not quite sure where Zach stands here. When tested originally, he showed little delays in these areas, he didn't even qualify for OT or PT initially in the EI programs. But I see he is slightly clumsy, and not drawing, and not throwing a ball with accuracy. This scares me.

And then he zippers his PJs about a month ago. Yeah. He initiated it himself. Sophia didn't do this until she was 4! Sophia has just begun to dress and undress herself independently this year. Mind you - that is with a lot of coaching and coaxing. Zach just up and did it on his own one day, without being asked, without being prompted. That's what Zach does. He just does sometimes. You could be working hard on trying to get him to progress in a specific skill - such as identifying his body parts, which is painstakingly slow these days. And voila, he starts doing things like zippering his pajamas which you have made absolutely no initiative to get him to address. These are the things that make me want to give the finger to science.

I run. I think most of you know that. Actually, I used to run, my new treadmill, not quite one week old, has already accumulated 1/10th of an inch of dust on it. Anyhow, when I got into running, I ran, and I ran often. I started to look into programs, I talked to other runners, joined a few groups, read bulletin boards, and a book or two. Form running, carbs, VO2 max, gels, speed drills, Asics 2100, sleep patterns, fartleks, trail running, 5 Ks, 1/2 marathons. After having a child, I was so grateful to just get outside and have a half hour to myself. In training for a 10 mile race, I had a 7 month old, who I was nursing. One day, after a particularly grueling night and a total of 4 hours of totally interrupted sleep and 3 lovely pieces of pepperoni pizza, the sitter came to the house, and off I went with Steve on a training run. Little did I know we were to run the full course that day. I was far from prepared - didn't eat right, little sleep, mentally unprepared, etc. I ran my best time ever. The day of the race comes. I eat all the right foods, have the right ammo (gel pacs, etc.) get proper rest, you get the picture. After climbing hill 2 of the race, at mile 7.5, I get the most debilitating cramp, and I do a trot for the next 2 miles that brings my pace down to a near walk. What the hell?

That is what this feels like with Zach. All this research, preparation, hard word. In the end, what will be will be, regardless of what we have done to try to produce a certain outcome. He is just a big mystery.

Those of you with children probably feel this way about your own typical children. You wonder who they are going to be - doctor, lawyer or Indian chief? Most popular, most likely to succeed, or no show to all pictures in the yearbook? But there are still things you can count on in their development - especially their ultimate independence. There is no taking that for granted with a child with an ASD. this is likely the ultimate in the ASD mystery.

Damn these Syracuse winters. We are not getting outside that much. It was a balmy 11 degrees with a windchill of -5 today. Not exactly calling you out to get some fresh air. I fear indoor air quality issues, and purchased a new CO monitor, and 2 new plants, and some high end air filters for the furnace. I am glad that the fireplace drafts into the house, and so is National Grid. We are painting and I make Steve use low VOC paints.

On top of this indoor air quality issue, I have a concern about our activity level. It stinks. We tend to sit around a lot more, although I try to engage in some activities over watching videos, but my arse depth and width indicates that we are definitely more sedentary. I think about if we lived in southern CA or FL how we could be playing basketball outside, going to the playground. Instead, we buy big houses so we don't stare at the same four walls long enough to drive ourselves nuts. Sophia has made her opinion quite clear that she likes her new house, and that it has enough space for her. She misses the attic of the old house, but really appreciates 3000 sq feet over 1400, even if 750 of that is in the wasted space of our two-story foyer. Personally, more space is nicer to live in, but makes me want to scream when it comes time to clean, which is pretty much always because there is so much to stinking clean. 8 sinks! Who the hell needs 8 sinks!

So we spend a lot of time indoors. And this translates to lost time developing some skills that we would if we were able to partake in outdoor activities. Zach needs more opportunities. I have to look into more physical opportunities for him - perhaps a jaunt back to MyGym again - or an additional of swimming lessons.

I am not exactly doing things by the book here. Well, at least not the ones others use. I love the book "A Bad Case of Stripes" by David Shannon. What we have here, is a bad case of stripes. The experts and specialists have been called in, the naturalists and homeopaths have been referenced too. We just need to find our lima beans.

OK - for those of you who haven't read the book which is likely most of you, I think the thing I am realizing in all of this intervention with Zach, is that there is no solution, no process, no formula to what is going on with him. It appears likely that some progress will be made based on these interventions. But no one is an expert in Zach, not even me. He is a mystery to us all, although few of the experts working with him will likely ever say that. My dreams of a child who can articulate their wants and needs to me, are my dreams. I cannot make them happen. Zach's verbal ability is likely based solely on if he wants that too. And that is the mystery - does Zach actually want to talk to us?

The Wreckage

We received a phone call from Steve's aunt the other day, her opening line to Steve: "Why don't you like me?" Yes, it appears we left illness with our host in Rochester.

We will be heading to the doctor tomorrow with Zach. Sophia is feeling fine. There has been no itinerant services here all week. YIKES! Our poor therapist was sick earlier this week. Yesterday, after a previous night of restlessness during his sleep, Zach was sent home early from school because he was so lethargic. As of last evening, he had a low grade fever for a few hours last night, but otherwise OK. He slept much better, and woke up at 6:30. I decided to keep him home to monitor him and have an appointment at the doctor's office this afternoon to check out those darned ears of his. We didn't competle this round of the antibiotics due to the stomach bug.

Today, Charlie was dropped off, a friend's 95 pound Newfoundland puppy (9 months I think.) That is definitely adding to the craziness in the household, but it is good for the kids to stay used to having a pet around, just in case the pet gods ever decide to grace us with another one. Charlie is fun. However, knowing the potential for 150 pounds, I can honestly say that Newfies will likely not be the preferred choice for this house!

Sophia is so excited about Charlie that she actually wished for her first snow day today. And this is a kid who definitely loves school. Her teacher told her if she slept with her PJs inside out, there would be a snow day. Well, she didn't (sensory issues with the buttons on the inside) and there wasn't (roads were cleared in the middle of the night.)

This weekend will be spent playing with Charlie, a birthday party, and attempting to clean the house. Hoping to get everyone super healthy.

-Leanne

Hello from the Vomitorium

Unlike what I learned in school, vomitoriums were not places for people to yack in the good ol' days of those sons of guns Romans. A vomitorium is actually an entrance to the main seating in an ancient theater. Oh well, made for a catchy title to today's post.

Sophia seemed to get over the bug pretty quickly. Zach and I came down with the bug last night, after a terrific trip to the Strong Museum of Play in Rochester NY where we likely spread our germs at numerous exhibits unknowingly. And Steve just left the room 7 minutes ago with a look on his face that tells me he has now joined our little group.

We spent the day, lying around the house watching videos, and just hanging tight on the down lo. At least Sophia is doing well.

We had a wonderful time at Strong, where we actually ran into two friends out there! One from Rochester with her beautiful family, and another from DeWitt with her two oldest girls. Strange to drive an hour and a half from home to run into people you know. There is a new Lego exhibit, and it was a great way to get out of the house for a day. After the museum (we were there for 3.5 hours) we went to dinner at Aunt Mary's house. Of course, the kids passed out from exhaustion on the way there, and proceeded to sleep for an hour while we were there. I am so praying we didn't get Aunt Mary sick!

In good news, Zach continues his "I wish" but then added "a dream" a few days later, and a few days after that "I'm happy". He just blurt these words out, randomly. Thank God these are such nice positive words - because if they weren't it would be a little eery. Can you imagine your child randomly saying something ominous like: "the end" or "death to the mayor". Now that would be freaky. The weird things I think about compounded by my fever.

Zach had a bite of a banana, a bite of an apple, some tings, water, cranberry juice, and half a clementine orange. I think he is doing much better this evening. He certainly is taking it in stride, much like Sophia did. No school for Zach tomorrow though. Don't want to pass this around. If he does well tomorrow, then Tuesday we will go.

No fun being sick. But we are doing OK.

The bug

WARNING: References to bodily functions will be made.

I lie here unable to sleep as my dear daughter lies on the floor, strategically placed so that she can make a quick entrance to the bathroom. She has thrown up twice tonight. Of all nights, to let her fall asleep in bed with me, I chose this night? There was vomit everywhere, and the stench is in the air, regardless of the cleanup and Lysol products used, is just nasty. Too cold to open a window. I have left a bathroom fan on to encourage some air turnover.

She will likely be fine, but I am worried about the potential outbreak at our house. I hate hate hate when Zach becomes sick. He cannot tell me, and I just fear what it may trigger. He has shown no signs, and so I will send him off to school tomorrow. Still trying to figure out how to pick him up from school when I will have her at home to take care of. I will need to make some phone calls in the morning.

As I lie in bed, the occasional funk of Lysol/vonit through the air, unable to sleep out of stimulus and worry, I decide to drag my handy dandy laptop out. I decide this is a good time to go looking at job opportunities. As I look through the engineering positions, I cannot help but begin to feel nauseated myself. In my single days, I would love the opportunity to respond to some of these positions. Many of them are in areas where I have no experience, but I would gladly take a class, read some books, etc. on the various aspects/requirements for these jobs. But how in the world can I do that now?

It is not autism alone that has me feeling that I can commit no further than to clean up vomit and drive kids all over town to various appointments and outings. I Google "women engineering attrition" and look at some of the various studies that have been conducted, mostly on retention of female students in engineering curriculums. A new search "women engineers change career" gave me a little more data that I was looking for. I have a strong feeling I may never re-enter the engineering workforce again. I look at the job posts and I fear that not only will I lose the ability to keep skills current, but moreso that my confidence will never be what it was 15 years ago. If there was one thing that I know hindered my at my job, it was lacking the bravado of many of my peers.

Since becoming a mother, I have had a particular problem not letting my personal life interfere with my job; work/life balance issues plus what is referred to as "presenteeism". I think that the special needs stuff certainly played into this quite a bit. Mom and the cancer didn't help. And then the tedious nature of the round the clock, constant attending to the kids and the special needs stuff, has dulled my blade and dampened my enthusiasm in most things. There is little thriving around here, more like surviving. That just feels so negative!

I found out I will likely not have unemployment benefits by the end of February. If there is one thing that worries me, regardless of the situation, it is finances. I feel so vulnerable without the security of two incomes. I feel useless since my income created so many opportunities for our family.

Perhaps if I felt better about my parenting skills, and my ability to be more effective with Zachary, I would not have this worthless feeling. I know what I am doing is meaningful and worthwhile, I am just not sure how effective I am at doing it.

Cleaning puke at 3 in the morning, and toilets and everything else on a daily basis, is certainly sapping the energy from this ol' gray mare. I keep on using my running analogies, that this is a hard run (no fault of my own) and that I need to keep on putting one foot in front of the other and try not to walk too much while I complete this portion of the race. I keep on hoping for better days.

I am so confused about Zach. I have seen all these other little ones take off in their language development that are also on the spectrum. We are doing the therapy, the school, working with him myself, taking care of his medical issues, getting him rest, nutritious food, opportunity for play, exposure to others and the world, and loving him through all of it with smiles, hugs, and kisses. We only get a nugget here and there. His latest thing? "I wish, I wish". He keeps on "wishing". I think the Care Bears Movie has had its impact on him. I laugh that this is what he picked up on from the movie. I wish I knew what he was wishing for... So many books I have read seemed to indicate that language, once begun with some rudimentary words for requests and labeling nouns and verbs, usually picks up a lot of speed. Zach is just not picking up the speed. Its like walking through knee deep mud.

A friend whose son with ASD is doing gangbusters posts his accomplishments to her facebook page. Many people respond with comments like: "he's doing so well, because you are such a good mother." Does that mean that I suck as a mother because Zach is not making the same progress? In a way I don't care what people think. But I could certainly use more encouragement. I am having a hard time mustering the motivation to push through these days with all the vigor I had in the beginning. I have not exercised in a few months, my eating habits are horrible, and everything I do is either cleaning the house, or autism, or taking care of the kids. "My time" is when I am allowed to go grocery shopping by myself, attend a meeting (more autism...) or take care of someone else not located at our house. I am feeling weary. The grey skies and snowy roads of Syracuse are not helping. I need to snap out of this.

Steve seems to be doing OK at work, but rather sullen at home. I try to take care of as much as I can, last week even doing all the housecleaning, laundry, cooking, house management, and Zachary paperwork management items on top of taking care of the kids and the advocacy work. I encouraged him to stay late at work if he wished. Unfortunately, it didn't seem to affect his mood. I am wondering if he even noticed how I pushed myself to accomplish a lot at home to take the burden off of him. I feel my efforts are futile.

Although I have seen quotes and it surely makes sense, I cannot find any research to support the autism/80% divorce rate statistics I read about. I have been told that autism has made marriages stronger. uuhhh huh. OK. Well, all I can say is "not it". I wonder if one day we will ever like each other, let alone love each other, again. We do "love" each other in a very important sense of the word - we are both trying to take care of one another the best we know how and we are commited to our marriage. But aint no romance novels being made outta this let me tell you. Roles, obligation, work. Sounds like total drudgery, eh? I remember telling Steve to keep me laughing, and he used to, even amidst 4 months of colic. But there isn't a lot of laughter in our house lately.

And then there is my little angel - sleeping on the floor. She likely inadvertently infected someone at ballet tonight. It was "parent observation" night at ballet. Zach watched. I wondered if he got it. A fellow mom at the class told me about a Wii game called "Just Dance" and told me her learning disabled (possibly ASD) child loves it. I will likely try this out. Zach loves to dance - and it sounds fun!

Maybe that is what we need in the house ... a little more fun. I probably need a little more sleep before I start the next day. G'nite.

Laughter, but not the good kind.

We are accustomed to believe that most laughing is a great thing, unless in the movies when it is coming from some maniacal criminal when they are about to do something nasty to you.   But no one would think that my precious little boy would laugh and it would actually bring stress. 

Crazy laughter after not sleeping very well, plus hyperactivity.  He ate 3 bananas yesterday - and I have read that heavy phenolic foods can create inappropriate laughter, and other behavioral issues with some children on the spectrum.  I will ask his integrative pediatrician if she recommends an enzyme to help with processing phenolic foods at our next visit.  

We had a playdate Saturday night at our mirror family's home (son is almost 3 on the spectrum, daughter is 5).  It ended rather abruptly when their poor daughter and Sophia were getting rambunctious.  I had just commented that I surprised that we had never had a trip to the emergency room when it happened; the poor little girl manage to land on her arm the wrong way after jumping off a slide into a pillow.  Off to the emergency room they went.  The poor little girl broke her arm! I felt horrible for my remark. 

I have been running a low grade fever for a few days.  I am constantly cold and have joint pain.  Fell down some stairs earlier in the week when my knee continued to collapse underneath me.  Not sure what I have going on, but it is definitely slowing me down.  I am actually wondering if I broke something.  Small breaks sometimes cause a low grade fever when they first occur,  Add to that some sleep deprivation due to Sir Sleeps A Little and  I will be a bit of a zombie today.

Trying to plan for the fundraiser, and launch the new FEAT website this week.  Unfortunately, all I can think of is sleep, oh wonderful sleep.  Unfortunately, two little ones with no school today, and Steve has work, so I just have to keep on moving.

He called me "Momma" !!!!!!!!

Prior to his regression, Zachary did say Momma and Dadda. He pointed, said Buddy, "Thank you" , "Please" and "Welcome" as well as some other words. I recently spoke to a therapist about a child they knew who is 8. Although he is 8, and can identify his mother as Mom, he doesn't "call" her. On some days, when Sophia cannot seem to say anything else, this almost sounds like a blessing. But, of course, it isn't. I want my son to be able to get my attention, especially if he is in trouble or hurting.

Prior to picking up Zach from school today, I was a little sad. My life is a dash mundane, and not particularly exciting to the average person. Sophia just received a project at school for the parents to take a picture of themselves at work and write a description of their jobs. I deflected this off to "Daddy will handle this one." Life is getting less chaotic lately, and I have been so happy for the opportunity to begin to clean and organize the house, do some advocacy work, cook a little more, and most importantly spend time with my kids, doing therapy or work, and just playing! Life is not under my control, but it feels somewhat more peaceful than before.

However, a recent trip back to my previous employer gave me a perspective of how others view my current life: uninteresting and unimportant. I had a lot of people ask me what I was up to - when I gave some details, particularly that the kids are both in school, they would comment about me going back to work with my free time. *sigh* I would like to think I wasn't impacted by these naive attitudes, but I was. I have been feeling like I should do more. The problem is, I am really running at 90% capacity here, and that extra 10% reserve is commonly used with all the unexpected things in life. I do not nap during the day, no bon-bons and soap operas, and at night, I collapse into bed if I even make it there, I usually fall asleep on the couch after reading stories to the kids. Things are sort of balanced - a job prospect would likely throw everything totally out of whack. But what did I have to show for my efforts at home?

A little more calmness is pretty notable to me. And now that we are getting to witness some progression with Zachary, that helps give us some tangible markers that the sacrifices we are making have a worthwhile purpose. Zach's words are indeed the most spectacular sound I have heard, with only Sophias singing Christmas songs while playing by herself in her bedroom coming close.

Sophia spilled juice on herself in the car on the way over to get Zach, and proceeded to blame me for not putting a valve in her sippy cup. Tears were flowing. I was practicing the deep breathing technique from Lamaze to keep the nerves in check (Finally, something it is really good for - temper tantrums when on long rides in vehicles.) She calmed quickly after some words of wisdom from me (for once) and I felt like a superhero. We sang a little song as we entered Zach's school. Just another normal day in the life of me. But indeed it wasn't. As we turned the corner, I saw Zach's OT carrying Zach back to his classroom. He made eye contact with me. Terry kept on walking. Then she stopped and I noticed he looked sad. Terry turned abruptly to see me and I heard her exclaim: "Yes - there is Momma!" Apparently, I couldn't hear Zach calling for me - and Terry was unaware, at first, that I was there when he first called for me. I ran up to Zach picked him up and did an all out happy dance, with full-fledged jumping up and down, creating quite the scene at the school. I managed to keep the tears at bay, but my joy could not be fully contained. I was surrounded by 3 of Zach's therapists and there were plenty of smiles to go around.

Some people will never get why I left my career to stay home, and I know that. No amount of explanation will ever get it through their heads. Zach called me Momma, without prompting, spontaneously, independently, appropriately! Zach called me Momma today, and that is why I stay home.

The New Year

We arrived back from North Carolina just last evening in the midst of 14 inches of the fluffiest white stuff you ever seen gracefully sparkling in the light of our headlights. It of course started just north of Binghamton (hour 10.5 into our12 hour journey home.) Welcome home to the land of the demented, because you have to be to deal with 10 degrees and 14 inches, snowplows and shovels, thick sweaters and thicker socks.

We went down on the 26th to North Carolina to spend a few days with Babcia and Aunt Cindy who was in from Colorado. Sophia was so excited to see her - she relished every moment she had with her Aunt Cindy. I was impressed that even though the distance is so far, and so much time has passed since we last saw Aunt Cindy, Sophia was nothing short of enthralled with her. I realize now that Sophia has a certain magic, something I was not aware of until this trip, and I am so happy for her - she will always be able to find love in her life, because she loves so unconditionally and without pretense. I am surprised it took me this long to recognize, since she received this gift from my father. He had a way about him that he was just extra special to all of us in our family. I think it was his nephew who said it best at his memorial service in Georgia, my father had a way of "making you feel like you were his favorite". Sophia has been blessed with this same grace in her life, and I realize now that she will make countless people happy in her life, and will, in turn, receive many blessings from this.

The weather was not as warm as we would have liked in NC, nor was it as sunny as we anticipated. But we were able to get out for a few family walks and a trip or two to the school playground. We also had a nice trip to the Aurora Fossil Museum where the kids dug in the dirt looking for fossils and had the opportunity to see a real dinosaur egg. Another day we went to the Washington NC Estuariam which was a lovely museum where they discuss the unique features to the waterways in the area because of its merging point of salt and fresh waters. The kids loved the museums - were interested in the material presented even - Zach and Sophia sat through a 15 minute movie on the areas environment. A trip to the mall was less than we had hoped for, but got us out of the house on a cold and gray day.

The kids received a load of toys and goodies. Grandma and family were so generous, as usual. Big hits included the Legos sets we received from Aunt G and Uncle R and the many Christmas singing/music playing plush toys we received.

The drive back from NC was fairly uneventful and I have to say - we have two of the best mini-passengers there are. I am not sure if it is because of the DVD system and the 50 videos we brought, or the appropriate snacks packed, but the kids do great! I feel so lucky that they can withstand the 12 hour journey and do so with minimal effects.

We spent the day home bound today, playing with toys we haven't seen in awhile. While watching Zach play - I felt something I haven't felt in awhile - I get the feeling that Zach is progressing in some way right now. I have nothing to pin this feeling on that is tangible or that I can explain. Perhaps it is wishful thinking that he is making progress, or desperation. Whatever it is, I feel like he is morphing a bit right now in his development - as if it is unseen, for now, and will display itself at some later time. I am so excited to see what will transpire.

I know some may think that the New Year just has me feeling hopeful, and with good reason since I am not able to point to any emerging skills in particular. But I trust this feeling, something is emerging in my little boy and I will be so excited to share it all with you one day.