When Your Tired and You Know it Snap Your Fingers??

He's been crying for 45 minutes, straight. This is the point in the day when Momma starts to get a little wiggy. DD (dear daughter) is whining for everything under the sun, Zach is tired and not liking the demands placed on him by the speech therapist, Momma went to bed late last night - so we basically have a house full of cranky people right now all trying to coexist. How do you think that works? Not real well.

We have discovered that Zach can indeed meltdown. He has had little tantrums in the past - I would say nothing more unusual than another typical child his age, with the exception of he cannot tell me specifically what has his goat. Then came Friday the 10th. And that afternoon we had 1 hours and 25 minutes of straight crying - big tears, sobs, so loud, especially for my little man, and he would throw himself into the couch (you know the big billowy stuffed one that he spread peanut butter over a few times these last few months) face first so that his sobs would be muffled. I swear he was trying to spare us from his agony. I am afraid it didn't work as the next 20 hours were spent with him miserable - although the crying did eventually cease.

At times like this it is difficult to write those fluffy little posts that, although real, don't permeate quite as deeply into the crevices of what are life can be like at times. Exhaustion. Fear. Sorrow. All mixed together. And unlike so many other things that cause those feelings, there is no cliche that applies to help get us through.

The cliches I grew up with are likely different than the ones you did - I think each person clings to a set of them that combined become a mantra for living. Maybe it is a great philosopher who goes deep into places you wish you could - sure they might appear scholarly, after all academia thinks so. Personally, I think a lot of them did a little too much me time and not enough hard living.

Some cliches run in families. People seem to like to recite what was once told to them. This is true in my family and my husband's. In my family a few come to mind at the moment: "Little children, little problems. Big children, big problems." Nope. Doesn't apply here - autism changed that. My personal favorite: "This too shall pass." What a crock. Autism certainly blows this one outta the water. Ask any caring parent to an ASD child their biggest problem - the fear of what will happen to their child once they are gone - time does not take care of this issue. Time exacerbates it. While some people are not as profoundly affected as others, for those of us who are looking at a lifetime of autism that will require support, we get scared. I've seen the injustice of Zach not receiving the services and care that have been contractually stipulated for him and I am a fairly strong advocate. What the heck is gonna happen when I am not here?

So amongst the flow of muddy waters we are now treading - Zach has acquired a new stim - he has begun to snap his fingers. On his own. Not having ever been shown how to. A skill, I might add, that is usually developed between the ages of 6 and 8. *sigh*

He is reading a few words now although getting him to learn the Dolch sight words (the, and, I, me, my, him, make, etc.) the school will be working on is of little interest to him, and thus, is not something he is picking up on quickly.

Going off to sleep now. The cries have subsided for now. Time to make hay...

Want Bless You

Within a 10 minute span: 1) He spelled the word funny on his iPad. 2) I found him with a serrated knife in his mouth. 3) He said to me "Want bless you", paused and then said "Achooooooo!", I said "God Bless You" and he laughed . 4) He managed to break the Tiffany lamp in my front hall. Wow.
Love him. Life is crazy.

Life is not a pie

There is this thing that happens when jump into the sea of autism: you find others alongside you, and you temporarily cling to them, as they are the only ones at the point in time that understand remotely what you are going through. They have children approximately the same age or with the same symptoms as your child. You ebb in and out of the waves as you first enter the water together. You share what you have figured out of the system that throws you in different directions - sort of like telling the others when hi and low tide times are. As time marches on, there is a pretty good chance that your paths diverge. Sometimes it is because you are doing different approaches, one might be doing ABA, the other Floortime, and yet another, just basic services. You may have chose different schools, no school and just letting kids be kids, or homeschooling. These different treatments generally don't divide us as much as a more obvious fact: some kids progress more than others. Some will tell you that they are progressing differently, which they are, but in terms of normalcy, and a possibility of arriving at it, there are those more obviously likely than others to achieve independently living.

I do not feel stabs in the heart when other children progress more/faster than Zach. But I will not lie, I used to. Now, I love seeing kids progress and love hearing those stories.

It's sort of like when I was single and my friends were getting married. Just because I wasn't married (and would not for some time, I was a ripe old maid still single at 30) didn't mean I didn't want to hang out with them anymore. They had managed a part of my dream I hadn't a little sooner, but that didn't stop me from dreaming of my prince charming and wishing them all the best. Those friends who had good marriages kept me in the game, they let me think that I could have my dream too. And I am 100% convinced that dreams are necessary; dreams are what make life bearable.

That didn't mean my heart didn't ache to find someone to share my life with, in fact, it did so much that I recall sitting in a friends car after choir practice one night, with the rain coming down, and asked her to pray with me. I asked her to help me ask God to either find someone or to take the longing in my heart away. It was within 6 months that I was to meet Steven. Supposedly, according to DH, he had said a very similar prayer at about the same time I did. I don't know if this is really true, or we was just trying to make me feel less corny.

Anyhow, I know that when I am with friends whose children are going gangbusters in the development department, neurotypical or not, there are these moments that I recoil into our little Morphet autism pit, a place where I try not to dwell for too long too often, but a break from pretending that Zach's autism is no big deal to me, that I am handling it like a champ, a place where I can feel sorry for myself and him and let the anger and sadness do its thing.


Zach doesn't not have age appropriate verbal speech communication. He once had snippets of this - prior to his regression. He said "Please" and "thank you" unprompted spontaneously and appropriately, "oh no, what did you do?" At his 18 month screening, he even displayed some letter recognition, only to be taken away by the regression.

The other day, Steven brought home an iPad from his office. I, missing my days of playing with new stuff, delighted in it, and quickly went online looking for apps that I had read about. One app in particular that was published the 18th of May I grabbed first thing.

I sat with Zach and watched him delight in the new game, as he figured out how to push his finger around the screen, the big appeal of the iPad. A day later, he had mastered the movements of the iPad and he spelled a word on the screen as required for the game. When he got the answer right, and the game became animated to let him know he did it, for the first time that I can recall since before Zach's regression, he actually sought my eye contact out. He had this shocked and elated look on his face that was so evident that something was clicking in him. It was as if he was saying "Mom - I did this right? That's the purpose of letters right to make words? And words mean these objects, right? Mom - I get this, I remember how this works!" It reminded me so much of seeing my old school chum's press badge and the shock of recalling something from awhile back.

It took awhile for me to finish this post because into the Morphet pit I went with my bitterness as can be seen by the following paragraph.

But alas, the iPad will have to be returned, and at $600, we will not be able to buy one anytime soon. Therapy is running us around $1500 a month right now, and the diet, supplements, copays, uncovered medical expenses are tacking on non-negligible amounts too. Did I mention that Yale went up to $5500 for an evaluation? uugghh *sigh* I have heard that much of this should be on the shoulders of the school district or local government. Meanwhile, many of the things we request help for that others have had reimbursement for such as trampolines, swings, therapy are being rejected, too, and this one device that I can tell could be a huge help for him, will not even be considered. Meanwhile, how many civil servants are billing time to my son's case all while writing rejections to us rationalizing how they aren't going to provide him with services or whatever. Yes - that is a bitter taste is in my mouth, and it is likely time to recoil into that place when I just can't handle how stupid and unfair this stuff is. My son is being thrown under the bus once again.

Out of the pit I come...

I can see why jealousy or discomfort could be a problem between families with children on the spectrum. When little Joey gets something, and little Tommy doesn't, that's tough. When little Michael suddenly becomes verbal and little Andrew sits off in the corner stimming, that's tough. I am not mad at the other parents who get help, they deserve it as all those families with special needs should. I am not bitter as to why a child is speaking and Zach is not, they give me hope that Zach may one day do that, and that they will not be counted among those who will judge us when out in public and Zach does something strange. Life is not a pie with only so many slices to offer. The possibilities are always there and as endless as the starlit skies. Things may be unlikely, but so are nearly all innovations and big changes at one time. How many people would have believed cancers could be so treatable (as with my mother) or that we could check sports scores real time while camping in the woods or publish videos for all the world to see in a matter of 15 minutes of what felt like a miracle witnessed with their son.

Made it through the night

The three of us cuddled on the couch for the evening.  I listened to the kids cough most of the night, and made sure they breathed. Don't mean to be obsessive about this stuff , but I am sure a few of you out there think I am.  For the record - any illness that has an accompanying fever is what really does me in.  A few of you may remember from previous blog entries that Zach's initial regression was after a high fever for a few days in  early July 2008.   I am not as nervous about how this flu will manifest itself as I am worried about what it will do to Zach's autistic symptoms.  Will he lose speech again?  Go off to the corner and rock again?  Been down this path a few times to be cavalier about this. I think the possibility of seizures is what really gets me. 

5-10 days is what the nurse told me.  Sophia was fever free this morning although that cough is just terrible. 

Although I am not happy that my kids are sick, I have to reveal a little secret:  this feels like a vacation.  No school or therapists.  No demands.  Just time to play with my kids and cuddle - and we are.  The sun has been out the past few days which feels good in typically gloomy ol' Syracuse. We have played the games Trouble, Memory, and Whack a Mole (my personal favorite that I frequently will play by myself only to look up and see looks of disgust from the children on how much I am into it), played at the train table, with Match Box cars, fooling around at the piano singing songs,  doing puzzles, flash cards (Zach's particular favorite because they are Thomas themed).  And a few videos and lots of cuddles.  It is such a change to just be like this.  Is this God's way of giving us a break?  Wish it wasn't accompanied by such a nasty sounding cough.

A Note on Dread: Just Do It

I have recently received many comments of consolation regarding my unfortunate tooth issues leading up to my recent root canal. As many of you may recall, this tooth issue first occured right after I managed to cracked my tooth from clenching my teeth last October when we first realized Zach had autism.

I was not expecting such outpouring of sympathy over my (stupid) tooth. I guarantee you, although it hurt like hell, it no where felt or feels like the sadness in my heart over what is going on with Zach. I would gladly live with that pain if it meant Zach miraculously could be back to his old self.

So why is it that people had no problem reaching out to me over my tooth - but not the ordeal we have been going through this past year? There are two things that come to mind when pondering this thought: 1) people can relate to a hurting tooth, people don't all have children with special needs, 2) a hurting tooth is most likely treatable/fixable, uh autism, not so much, at least that's what most people think.

Well, I almost felt like telling people to take a hike when they showed me sympathy. I certainly wasn't expecting it, and it almost irritated me. I guess I now realize that I don't want sympathy with any of what's going on with us, what I want is understanding, consideration, contact with others, a helping hand once in awhile.

A recently heard a story of a woman coming back to her hometown of Syracuse, and being asked to visit a family friend whose husband had a freak accident and is now left a quadriplegic. This is a man who was a well respected doctor in the area and had many a friend prior to his accident. The woman was dreading going to visit, but felt obligated to.

There is a switch that most people don't likely flip in their lives that results in a different approach to this problem. No one likes that someone is having difficulty in their life. If it is something you yourself have not gone through, the unknown is very scary. If I had to hammer out a guess a person with a lack of introspection and who has been blessed with little struggle in their life will likely run the other way. A person who is familiar with loss, or true soul reaching pain, will know that it's only an hour of their life and will attend.

I once heard someone thank a friend for visiting a near death woman at the hospital. What I didn't expect was to hear the person respond in kind that they were grateful to have been their to comfort such nice people. This remark has always stayed with me. Was the experience pleasant? Well, I am sure it wasn't like going out for ice cream. However, much of the time the life we lead is not the reality of our existence. It is the filler. Things that cause us to have meaning in our lives are these exact significant events, uncomfortable as they are, they are what give us meaning. We still like going out for ice cream. In fact, it tastes even better now that we truly acknowledge that simple pleasures are indeed a blessing to be cherished as much as the great new sports car or trip to Hawaii.

In the Catholic diocese which I was raised, we were mandated to perform community service as a requirement for confirmation into the church. Guess what I did? Worked with the retarded and autistic. Yup. Used to come home crying because of how dire the situation was for some of the kids. Also had to teach how to make grilled cheese for some of the older students who were learning life skills. The funny part of the story was that I had never made one for myself before! (Mom hated us in the kitchen to cook.) I also taught a few students how to take the city bus and purchase items at the farmer's market. Being from suburbia I barely knew how to do this myself. I will always remember that time. I was proud of the work I had done and used to share my stories with others frequently.

Avoiding someone because of what they are facing? Well, my recommendation is don't. You will be cherished for making the effort, feel better about yourself, and will be doing the will of that which created us.

Did I happen to mention I am dreading Zach's upcoming IEP meeting on Monday? Wish us luck.