Wednesday, May 27, 2009

A race against time; it's all about the numbers.

Sophia is sick now. I am not a big fan of vomit, although I can say that we are getting pretty proficient of cleaning it up in our household. Can I write that on my resume? Cuz I am so close to getting fired now, I'll need all the skill sets I can muster.

Zach has been tantruming since the last bout of illness. I don't know how to explain how much worse it is when he gets sick than Sophia. It's not just the illness, but the aftermath too. He gets out of the routine of his therapy and gets angry when we start the routine again and thus tantrums. Now today, having realized I am home, he gave one of the therapists such a hard time, my nerves were shot by the end of the session. It wasn't just the crying, it was the screaming, and hearing thumping indicating he was throwing things, in this case himself, against the ground. Think about this going on for an hour and half folks. Unfortunately, because Sophia was sick on the couch, I couldn't just leave the house and go for a walk. Instead, I heard it all and my nerves were pretty frazzled. The goofiness is that this happened during his second session, and oddly enough, he was fairly compliant during his first session. I sat in on a portion of the first session, which I think may have helped.

Zach has begun to attempt to count. It is pretty funny. He actually goes up to 20! Mind you, it isn't exactly consecutive, but it is sequential. It usually goes something like this:

Me: zero, (all mathematicians recognize the importance of starting with zero), one
Zach: two...
Me: three...
Zach: fow
Me: five...
Zach: sees...
Me: seven... eight...
Zach: nigh...
Me: ten...
Zach: thiwtee..
Me: no Zach, ten, eleven...
Zach: thiwtee...
Me: no Zach, eleven, twelve
Zach: thiwtee...
Me: fourteen...
Zach: twety..
Me: No, fourteen, fifteen
Zach: twety...
Me: No, fifteen, sixteen
Zach: twety...
Me: *sigh* sixteen, seventeen, eighteen, nineteen
Zach: twety
Me: YEAH!
Let's see if we can get him counting on his own up to 10 and then twenty with written number recognition by the end of the summer. That would be so cool... Yeah Steve and I were those kids who liked math - we're engineers! Duh!

We are in the process of trying to find a new vehicle at this point. The Avalon has served us well, with 13 years under her belt, and 183,00 miles. Unfortunately, it has a $1600 bill associated with it to get it past inspection, and will likely need some more work after that. So we are rushing to find a car. I hate having to do something like this when we have more important things to spend our time on.

Insurance reform is so important to us - I cannot even emphasize this enough. Steve would like to get a face to face with our local state representatives. I think this is a great idea. I think this is absolutely necessary, our families future, and so many others, are dependent on it. If anyone out there has any ideas on how to get that through to our state representatives, would love to hear them.

I am looking for therapists to work with Zach on days when the other therapists need to take off, in the afternoons, evenings, and on weekends. They will need to be trained, most likely. Ka-ching. I absolutely cannot lose my job right now. This will be too much money. But it is so important that he get all that he can right now. We have gone from a nonverbal, nonsocial kid - to an engaging kid who is playing with cards and starting to count. This is some major progress - and it will only go faster and faster as times goes on up to a point.

The magic age of 3. Zach is rapidly approaching this number. Such a critical time in brain development. The influence of early environment on brain development is long lasting. The environment affects not only the number of brain cells and the number of connections among them, but also the way these connections are "wired". Zach needs the additional stimulus in his environment to form the appropriate connections or "wiring". According to research reported in Early Learning Left Out: An Examination of Public Investments in Education and Development by Child Age (February 2004), 85 percent of a child’s core brain structure is formed by age 3.

Does anyone out there get that we have to do everything we can now? If this was cancer, I feel like everyone would be hopping. This could be the difference between a functional and non-functional individual - a lifelong disability that no radiation, or chemotherapy can rid. It might not be life or death (although indirectly it may be) but it is totally life affecting. Do people understand that there are others out there that go to college and get jobs, and those who are institutionalized because of dangerous behavior or total inability to care for themselves? This is huge people. Please try and understand that this is such a race against time as critical as a child with any life altering disease. He may look fine, but the course of this child's life is destined by the intervention he is receiving right now. I feel like there are so many out there that don't take this seriously because they really haven't thought it through and are responding based on their emotional response to a cute smiley kid - what's not to smile about right? Get over your instincts - autism is an invisible disease and it is very serious.

2 comments:

Raising a Happy Child said...

As always, you can expect 1-2-3 response, right?

1. Sorry that Zach is still recovering from his illness. I am not sure if I would be able to endure listening to Anna cry for an hour without running to her rescue. I admire you for doing what's best for him.

2. IMHO, you shouldn't correct Zach's counting. The word, "No, this is incorrect" should disappear from your lexicon for a long time. Celebrate his attempts and acknowledge to him and yourself that even incorrect counting is huge. Clearly his receptive language is catching up. Did you have him reevaluated yet as for his receptive language age?

3. I will be amazed if insurance reform you are advocating passes. You call it race against time, the opponents will call it "letting the nature take its course and letting slower starters catch up on its own". How will you be able to fight all the examples of slow starters that caught up by 3 without an intensive intervention?

Melissa H said...

Regardless, your voice should be heard and you have a legal right to that. Call your district rep and tell them that you would like a meeting and the reason for the meeting. Remember, I used to do research for the public policy division of a renal laboratory and organized a grassroots campaign where we lobbied at our state's capitol. You will probably have to call a couple of times, but they are used to setting up meetings for constituents. Hopefully, you won't have to go to Albany and can set up a meeting while he is visiting his district. But, that is up to you.

As for the screaming, et. al? I remember screaming therapy sessions all too well. Now, it is has parlayed to screaming obsessions, instead. I swear, I'm about to send you some of my Librax. ;-) (I'm half joking....)

xoxo