Age 6: In the Beginning, there was a Snow Globe

What can I say - age 6 has started out with a bang for my beautiful little boy.  While other mothers of 6 year olds are buying Star Wars toys, Legos and going to Little League or local soccer games, we are attending therapy sessions, working on bike riding still, and making sure our little ball of fire has not created an unalterable mess in his general whirlwind curiosity.  Zach has begun to once again get into mischievous trouble here at home.  Here he is covered in powdered sugar, as was erroneously left out on the kitchen counter to make a carrot cake for his dear father's birthday.  I left just for a moment, a mere lapse of time needed to empty one's bladder.  I noticed the eery silence with then sudden erruption of hooping it up.  As I walked in warily to the kitchen, there I discovered my dear boy enjoying his own little snow globe.  I quick grabbed the camera and snapped away.  After taking a few shots, I realized I had witnessed this once before, with his sister,  in a near negative image - the powder was brown as in cocoa, and the dog licking up the powder was black, as in Buddy.  In both circumstances, you know who had to clean the darned mess up and was smart enough to take pictures to remind herself why she deserves a night out with her husband.

Family Feuds

Us folks of kids with special needs are an interesting lot.  I think in particular, those of us privy to the parenting efforts involved with autism are indeed a particular breed of craziness relative to the general public.  No where have I ever seen such a group of people, advocates of the disabled, so ardent in their beliefs that they actually fight reminiscent of the Hatfield and the McCoys.

Nothing Says Happy New Year like a CSE Meeting

The hustle, the bustle, wish-lists, the cookies, the tree, relatives in from out of town, relatives meeting up and toasting, presents are purchased and dispersed, Santa. My worries were set aside, and we actually had a very nice Christmas.

We are so incredibly fortunate that for all of our special circumstances - our kids are very adaptable. Some children at this time of year fret and become anxious. Obsessive tendencies, sensory overload, phobias of men in red suits - these can drive some children on the spectrum into dark places, and leave their parents without the joyous holidays they wished they had. It tears me apart to read stories of people who cannot put up trees or spend time with their extended families because of some of the nuances of their child's autism. One of the things parents want is to reclaim some of their own childhood by doing the things they did with their own children. This is especially true around the holidays. We, for the most part, are able to do that. Zach's food intolerances notwithstanding, we almost had a normal holiday!

Actually, it wasn't normal relative to some of the things I read. There were no fights, no major meltdowns, depressive episodes, wishing it would all go away. This does seem to be the theme of the American holiday, where Martha Stewart wannabes unite and create irritatingly perfect Christmas cookies. Yet, these cookies will not be enjoyed by all - indeed Ms. Stewart doesn't accommodate those outliers - freaks of the gastronomical world - those with food allergies, intolerance, or Celiacs. No room for auto immune disorders in her world. I claim my superiority over her in that I accomdate my guests.

My Beautiful Boy Turns 5!!!

He's in kindergarten and he is now 5. Wow. How did we get here so fast?

It's 10:23, morning therapy has been cancelled, he's eating potato chips (OK - I admit I had a few myself) and a chocolate chip muffin and we are both still in our pajamas. That is how we roll in this house: birthdays are a day to break from all the requirements and duties of our life. In other words, we are lazy slobs who like junk food.

I spent last evening in tears. If you search around the web, you will read about "windows of opportunity" with autism. These are time periods that have been suggested to be crucial to the outcomes of children who are diagnosed early. The first oft cited window is 0-3 years. The next is 5. SLAM! Game over, right?

Now, let's get one thing straight right off the bat: I am not sad that Zach has only come so far and hasn't become the child I wish him to be. He is exactly who I want him to be - happy and involved. I hope those are the two things that make him feel fulfilled - my ultimate goal. (Thank you Ms. Cutler for your help with me understanding that...)

My tears came from self pity - a frustration with myself: I no longer work, have a graduate level education, have supposedly dedicated myself to my children, and yet I have failed him; his communication skills are extremely behind.

Something in me tells me he is much more capable than his existing skill set. Gut feeling? To a good extent yes. But a gut feeling with some research/science and anecdotal evidence behind it: he has a lot of the requisite skills for speech: his articulation patterns are mostly age appropriate, his receptive language is growing, he has several single words and a few phrases. The issue? He has yet to understand the purpose of language - most likely because I have not put into place the appropriate environment to realize the importance of communication. Without that, the gap will never close, and in fact, it may be growing wider.

Now I want to express to my readers - I do not cry. Well, OK I do - but very rarely. Compared to other women I have experienced - I am really pretty much on the low end of the scale when it comes to tears. The hours of crying last night that I couldn't control was just a shock for me. Why last night?

I guess I am also grieving the fact that he likely doesn't understand what a birthday is. I am in the process of trying to update him on when people ask him how old he is to say "five" and not "four" anymore. This morning my greeting of "Happy Birthday" to him was met with a blank stare. I wonder if the phone will ring with anyone from my family to wish him sentiments for the day. This brings me more sadness. (After I wrote this - Babcia Boulware did call - HURRAY!)

He enjoys birthday parties (see picture at right from birthday #3) - with his favorite part being everyone around the table singing with the candles on the cake. My selfish grief has yet to yield way to me even plan a party. I am hoping this post will help me clear my head to get out of this funk and figure out a way to celebrate the life that is definitely worth celebrating. I am so glad to have Zach in my life, autism or not. Nothing will ever be taken for granted like I see so many others do with those they love. Autism makes you realize that life holds no guarantees, yet it also makes you realize there is plenty of reason to hope.

He is my boy wonder. He has accomplished things that I didn't think he would, yet left other things out there to still be reached. He has helped me to gain insight into others. I have a life with purpose - when I see so many floundering that way - trying to find it in things that likely won't give them the soul satisfaction they are yearning.

My short term goal: figure out a way to celebrate this day for my beautiful boy. My long term goal: I won't cry at the next birthday. Zachary: You are a joy in my life. In a world of power struggles and lies, deceit and selfishness, you find your joy in dancing to a favorite song, swinging on a swing, and chocolate - things that will likely remain unchanged- simple things that so many people ignore.

Happy 5th birthday Zach!

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.