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.