Tag - treatment

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Some Unexpected News
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Okay, Uncle!
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Waiting
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Mighty Mito

Some Unexpected News

For more than a week I’ve been putting one foot in front of the other, just like I do every day. We survived Spring Break and even better, we thrived after John slept through for seven straight nights. This alone is huge, people, huge! I’ve been getting them up every morning — feeding and clothing and getting them off to school, as if nothing momentous has happened in our lives. Business as usual.

But there’s something even bigger. You mean the huge is not the return of some zzz’s at night?

No, it’s been brewing and it’s so big I’ve only been able to take it out and look at it when I’m quiet and the house is asleep. Even then, I don’t know what to make of it.

Our developmental pediatrician thinks Sam may be off the spectrum. As in, no more autism diagnosis. It’s not yet official — she has ordered new neuropsych testing to see where both boys are now, but she thinks he’ll test off of it. And as a good friend said, even if he doesn’t test completely off of it, he is close enough to be questioned and that can only be a good thing, right?

Right? You’d think I’d be shouting from the rooftops, “We did it!” And don’t get me wrong, I am thrilled at the possibility. It just hasn’t sunk in. And in any event, if it’s true, Sam did it. No miracle cures around here, just lots of speech therapy early on and some wonderful teachers in his special needs classrooms.

But then (and again, if this is true), what does that ultimately mean? They say to parents upon first hearing the news that their child is on the autism spectrum, He’s still the same child he was before the diagnosis, as if you need reminding. The same is definitely true if they take the diagnosis away. He is still a child who can’t stand to be dirty, who has a really hard time using both of his hands at the same time. He is still capable of massive meltdowns if his day veers off the schedule he expects.

Nearly two-and-a-half years ago, this was offered up as a possibility. I have often said how hard it was for me, a first-time mom who didn’t know what typical looked like anyway, to believe that Sam was also on the same spectrum as his brother. It took awhile, but I got used to it. I assumed that some of Sam’s quirkier behaviors were part and parcel of being on the spectrum. I practiced acceptance and tried to keep my patience in check when I forgot about his unique challenges, so different than John’s.

His O.T. just told me a few weeks ago that he is the kind of kid who has the potential of falling through the cracks because he is so bright and looks so good in many ways. In fact, his IEP team is recommending our home school, regular kindergarten, with just some resource hours for next year. Will he sink or swim?

So yes, I am thrilled at the possibility, I know we are luckier than others. But I feel like putting on the brakes. Just a little.

Okay, Uncle!

I’m wavering. It’s been barely a day since I wrote that pushing John to interact via ABA is worth it, no matter what, if it brings him into our world. But I’m listening to him scream right now and I’m not so sure, world. He sounds miserable.

Yes, he’s operating on little sleep. Yes, he has a stuffy nose. Yes, I took away his Po doll before he was ready. No, it’s not usually like this.

If there were a place I could run to and back — in fact, if running were something I could even do — I would, just to shake all of this uncertainty from my limbs and head and heart.

Waiting

I sit, I wait. And wait and wait. You’d think I’d be expert at waiting by now, and I may be, but I’m immensely unhappy about it. Tick tock. We went to the metabolic specialist as scheduled two weeks ago. Still waiting for the results! It’s been hard for me to blog lately, I am just so preoccupied … with this, with our schedule, with our upcoming IEP meeting.

I wish I had posted right after our doctor’s visit, because John was amazingly good for the pricks and prodding. He had to fast overnight before the first round of tests which turned in to 15 hours by the time it was all said and done. Happy boy. No, really! He even sat a very bustling restaurant amid the din of humanity — no tantrumming! — for his prescribed high-protein lunch (two scrambled eggs and a yogurt smoothie) before returning to The Lab of White Coats for more pricks.

On any other day, any one of the many stressful events of that morning (which began at 6 a.m. when I whisked him out of bed for our trip) would have created a torrent of dysregulation, but he took it all in stride. Which is why we only took John. His brother would have not handled it all this well. It’s fascinating that because they are identical, the doctors only needed to test one of them. I think, though, that if these tests keep pointing us in this mito direction, that they will also need to put Sam through it as well.

You might say, I’m a bit dysregulated with all this waiting. Hoping it ends soon.

Mighty Mito

I don’t know what to think. We keep getting phone calls from our doctor. Now, there’s a switch. It’s usually impossible to get them on the phone, but here they are, looking for US, they want us to come to them.

We repeated blood work and added some urine to the mix for good measure. This was about a month ago. The results indicate that we’re heading down the path they thought we might be headed down, the one called mitochondrial dysfunction. A brand new world of internet research for me to explore. Goody.

This is what I’ve learned. Mitochondria are the powerhouse of the cell. Mitochondria are inherited only from the mother, not sure why. Their autism could actually be caused by this dysfunction. The dysfunction, which could become “disease” someday, and hey — not only in them, but in me too. So much information.

They have called us back for more blood work and urinalysis, an all-day event that’s sure to cause much dysregulation all around. Can’t wait. I know perhaps I sound flip, but really, I am very anxious for this doctor visit. Something that might be treatable? No, not a cure, but a therapy that might make a nonverbal boy verbal.

Stay tuned.

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