Tag - worry

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The Worry Mom
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March Cobwebs
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New Skin
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Going Around in Circles
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Listening to the Dark
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Hope is a One-Way Street
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A Night of Too Many Thoughts
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My Two Goobers
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Depression
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It’s Not You, It’s Me…

The Worry Mom

The Summer Camp registration deadlines are completely designed to send someone like me over the edge — someone who continually and irrationally worries about things that may or may not come to pass, driving her husband crazy with her ability to work herself (and him) into a tizzy based on very little information — but a lot of precedent.

The word around town is that if I want to get one or both boys involved in a summer camp, the time to act is now. My ability to do this is complicated by not knowing if either will qualify for ESY services until their May and June IEP meetings. You’d be surprised to hear that I’d rather pull out my toenails than pick up the phone and just ask (see above). But I did, at last, because who is their #1 advocate? And my husband begged me, and because — my god, why shouldn’t I be able to do that. The general consensus is that John will most likely get ESY but that Sam may not. (ESY being granted only “if skills acquired during the school year could be lost during the break”).

There is a whole other tangent I could go off on here — how there’s a listserve for parents of kids with special needs in our county and how I hear — daily — about the angst that others are going through RIGHT NOW with respect to services for those kids. Sometimes I feel like I’m biding my time in line, waiting for the school district to come right up to me and say “Your turn! Screw you and your special needs kids. No, you cannot ask for ABA (or speech or what-have-you). We are out to get you.” But I’ll save this tangent for another post.

So ESY is just four weeks during the month of July. We are flanked on either side by three vast and vacant weeks with No Order. No Structure. No Routine. While that is manageable for Sam, it is unprecedented for John and has kicked the Worry Mom into high gear. Do we want to see him stop singing the Backyardigans song? Do we want him to build on the latest flurry of words yelled out: ball, snowman, foot? How can I live without the amazing eye contact, still fleeting but so beautiful?

I’ve now logged dozens of phone calls to different speech and language camps, OT camps and sensory integration programs. I am shocked to learn that most require a hefty screening fee just to meet us whether they accept us or not. I am discouraged to learn that there doesn’t seem to be a camp suitable for where John falls on the spectrum — all require a certain verbal ability that he has not mastered yet. So it looks like we are going to set up another home ABA program to fill in the gaps while Sam goes to a camp in the mornings.

I’d start worrying about how we’ll pay for all this, but this Worry Mom knows when to shut down for awhile.

March Cobwebs

Have you ever had a head cold and been so congested that not only was it difficult to breathe, but your hearing was muffled as if you were encased in cotton or submerged in water? That’s what it feels like with all these thoughts taking up residence in my head. Time for spring cleaning, or eviction, if you’re still hanging with my metaphor.

There are so many things I could blog about. So many, er, cobwebs.

1. We saw one of four possible programs for John & Sam when they turn three.

2. We finally did all the bloodwork recommended by the developmental pediatrician. Everything came back normal except one, indicating mitochondrial dysfunction. (“treatable with supplements and vitamins” this from one of the more well-known autism research hubs in the country; still no word on the MRI abnormality)

3. We took a walk in the neighborhood and came upon a friend and a gaggle of NT children who stared at John.

4. What it’s like, especially lately, to have two boys at different ends of the spectrum.

5. John’s budding artistry. Sam’s lovely speech.

And on top of all that, so many other bloggers have been writing about things I’ve been feeling, pondering, worrying about and I’d love to talk about that too…but I can’t tonight. Deadline met, 1:30 a.m. Going to bed.

New Skin

Picture this: I am sitting in the middle of the boys’ room at 4 a.m. sobbing. Yes, both boys are also quite upset, but it’s now been three hours of this crap and I am tired, so tired. And really, all that is left is either to run screaming from the house or cry.

When I was in my early twenties, I had — like many a 20-something — a crisis of identity. Who was I now that I lived on my own? Who did I want to be? Why was I so sad all the time? What did the future hold? Well nearly four years of therapy later, I felt much better: living will do that to you. By the time I was in my thirties, I had my feet firmly in a career, my own apartment, my own life. I liked who I was and, more importantly, I knew who I was. I felt comfortable in my own skin which only made things easier when I married a man who felt similarly comfy.

I thought about this last night as I tried every tactic I could think of to get first John, and then Sam back to sleep. I thought of the woman I used to be and wondered what had happened to her skin — why did it feel so foreign, so unfamiliar? Why did it feel like I was watching myself from above? Why do I feel so disconnected? Could I possibly be having another identity crisis?

This morning I realized, with the clarity that can only come after going 24 hours without sleep, that I need new skin. I need a tough new skin, one that will see me through this transformation into an Autism Mom I can feel good about. Because, really — I am so not there. I am mad at Autism all the time. Right now, it is not some quirky cute thing that makes me smile. It’s not just “who my boys are.” It is what prevents John from looking at me, it is what makes him jabber to his hands and not hear the rest of us. It is the loud shouting he’s doing at 2 a.m., 3 a.m., 4 a.m., wearing down my very last nerve.

And yet? And yet. There are moments, rare moments, when John will come up to me and hold my eyes like he’s seeing me for the first time…the smile that spreads across his face is like sunshine on new-fallen snow. I could burst from hope. And the joy with which Sam wakes spelling: “C-A-T. CAT! B-U-S. BUS!” The funny turns of phrase he’s started with, the fact that he’s actually reading, and I think, Yes, we’re going to be okay. I can do this.

I’m growing my new skin.

Going Around in Circles

My child has started to spin. We have had the toe-walking, the hand-flapping, the no-eye-contact, but we never had spinning. Now John is compelled to spin and spin and spin. He spins until he’s giddy and falling down, dizzy. How do I shake the terrible fear that grips me when he gets going? The fear that he’s disappearing, and that I can’t follow. He still responds to tickles, to the physicality of being held by his mommy — but soon, too soon, wiggles and bucks to escape my embrace to return to his spin, spin, spinning. So happy, smiling at something I can’t see. Will I see it one day?

Listening to the Dark

We’re not doing a whole heck of a lot of sleeping around here. This morning, at 4:30 a.m. as I tried to soothe John back to sleep by bringing him into bed with us, I wondered what might be going on with him. Despite the fact that many kids on the spectrum have sleep issues, we have been doubly blessed in that department. Both boys sleep straight through the night and have since they were nine weeks old. I’ve felt guilty about it (not really, I would’ve gone insane if it weren’t this way!), but now I’m afraid we’re making up for it. The last three nights, John has “talked” loud and long — hours after being put to bed. Then at 4:30 he awakes (loudly), and is almost hyper with energy.

I cradled him against my side in a futile attempt at coaxing him back to slumber. In the dark I could see him guide his hands up close to his eyes, his thumbs and forefingers pressed tightly together to make rapid, flicking motions with them — almost as if he were snapping. I don’t know if this is something that bothers him, if he’s driven to do it, if he’s tired of doing it. All I know is that my little boy, who has always slept 10-12 hours a night is not. And if he’s my son, he’s dragging like Mommy is right now.

Hope is a One-Way Street

I think that Hope is the number one hallmark of being an Autism Mom. Of course, this can come only after traveling through the stages of your own particular grieving process: Denial, Anger, Sadness. If you let her, Hope can even go along for the ride with these big guys — albeit smaller, quiet, feeling less entitled to hang around.

Even when I feel hopeless, I know that hope is inside trying to stage a coup d’etat. The hope that early intervention will live up to its hype. The hope that Sam will be mainstreamed sooner rather than later. The hope that John will learn joint attention. The hope that my boys will have full happy lives despite their Autism, or even in spite of it.

Sometimes it seems I will never reach my ultimate destination: Acceptance. The journey preoccupies me. The road seems endless, like driving I95 from Florida to Maine without stopping for a bite. So many forks in the road, which ones should we take. RDI or ABA? The scenic route would be nice, but what if it takes longer?

On my journey, each day is a little bit different than the one before it. I’m keenly aware that my sense of normal has changed. True happiness lies in the small things, in the hopeful things, which sometimes are big! Like getting a phone call from our EI team and hearing that funding was approved for John to receive 10 hours per week of in-home ABA therapy.

And this: while singing “Old MacDonald Had a Farm” with Sam, John shouted out “E-I-E-I-O” with a huge smile. He turned away and refused to indulge me with a repeat performance, but it was a delicious peek at the little boy inside. Hope is making me stop, breathe, and appreciate the sights along the way. I think I’ll continue traveling down this one-way street for a bit longer.

A Night of Too Many Thoughts

I watched one of our Tivo’d shows: Children and Autism: Talk Brain (weird title) and ended up feeling depressed all over again. I come out of these shows/talks/books convinced we’re not doing enough to help John and Sam and in complete despair over ever being able to afford the “20-40 hour home ABA program” that seems to be recommended by every expert. That, contrasted with others (specifically the professionals currently in our life) who believe that we shouldn’t overload them with too much — “they’re only two.” (I want to know: what is this early intervention window for if not for doing as much as possible, um, early?)

Ten Other Things Stressing Me Out:
1. My work has slowed, which means I’m even more neurotic than usual AND I have too much time to dwell on the above. (will I ever work again? can we even do a home ABA program if we don’t have a home?)

2. Hubbie and I have not had a date night in months. (and we could definitely use it)

3. My allegiance to a weight loss program keeps faltering. (usually around 10 p.m. with a pint of ice cream)

4. My roots are 3″ long and my hair is a mess. (sigh)

5. Our appeal to the insurance company is, alas, not writing itself like I had hoped. (although I did actually start it and do furtive updates and additional research when J&S are napping)

6. J&S are not napping. (aargh…)

7. I have mountains of too-small baby clothing that I still need to tag for upcoming Twins Sale (no, not selling the twins—just baby stuff)

8. Box of photos from birth and beyond is overflowing. (still have not organized, scrapbooked, or otherwise spent enough time stressing upon)

9. Pile of still-to-be-read books on autism next to side of bed is dusty. (somehow all the fluff ‘zines get my attention at bedtime instead)

10. This list.

My Two Goobers

Tomorrow John is scheduled for an MRI under anesthesia. I’m pretty nervous about the whole process and what the doctors may or may not find. He is still pretty unsteady on his feeet and the doctors want to rule out things. I guess I’m worried that the things they want to rule out will present themselves tomorrow. But I do know that a lot of kids with ASD have balance issues, so let’s just get these tests out of the way, please!

Here is my little goober playing with his blanket at breakfast this morning…

Last week was our first of ASD “school.” Through our state’s EI program, the class meets three days per week (only 1.5 hours, but I’m ecstatic to be doing something concrete). The ratio is four adults to three children, not bad numbers — and is ABA-based. We still need to find a private speech therapist to give both boys the extra hours they need and will also look into a private ABA program once we see how this program is working for them. I honestly don’t know how much is too much for them at two.

Here is my other little goober blowing bubbles…

Their first week at school, they both: played with pudding, held a fork, sat still for circle time and weren’t crying when I came to get them. What will they be capable of after a year of this? Even in the midst of fear of the unknown, I’m excited to watch them blossom.

Depression

This is hard. Hard to make a daily habit of writing. I could tell you that I’m lazy or distracted or busy with other things and all of this is true. But the real reason, I fear, is that to sit with my thoughts and craft them into my own local coherence is almost too much for me to bear.

We took John & Sam to the pediatrician last week for their 2-year visit. It had been awhile, so we were catching Dr. G. up on the latest developments (i.e., our official ASD diagnoses) and all of the sudden she pelted me with Well, this is big. How are you doing? Are you sleeping? Are you feeling overwhelmed? (and I burst into tears as if I were a water balloon just waiting to be jostled) You need to get on some medication. You need to talk to someone. You can’t take care of the two of them if you’re not sleeping. I think I blubbered something about being fine and about handling everything great and about not believing in medication, and even hell no, I’m not depressed.

Well, the strangest thing happened that night, I started crying. And felt ugh, depressed. (I think Dr. G made it happen—really, I blame her.) And then I looked at the calendar and realized it was 9/11. Five years ago I was still a newlywed about to celebrate a one-year wedding anniversary, motherhood was still just an idea. Hubbie and I still lead a pretty independent lifestyle where meeting after work for a drink and a game of pool was still in the realm of possibility. I remember trying to find my mother all day. She worked right across the street from the Trade Center. Late that night I heard she was walking into her building when the planes hit and was able to evacuate via ferry. I remember the everyday feeling unreal—getting a cup of coffee, grocery shopping, reading a book. A feeling of dread that blanketed my shoulders like a wet shawl. Feeling that dreams were pointless so why bother, why do any of it at all?

But now I have children. The dreams I have are now for them and today their autism is the shawl I try to shrug off. These days I’ve been feeling its weight behind my eyes, it is true. Crying hasn’t felt as automatic, as wrenching, in five whole years. It’s almost self-indulgent. I have nothing left to do but finish and move on.

It’s Not You, It’s Me…

The front page of today’s paper made my husband seek me out with worry. A pretty comprehensive study has found a link between advanced paternal age and the incidence of autism. It’s not often we hear advanced age in the same breath as paternal. Part of me thought It’s about time buddy, but a bigger part of me really doesn’t care. There have been so many studies, so much head scratching when it comes to figuring out ASD, and really — who knows?

I concede to having felt extreme guilt for things I unknowingly exposed my boys to while pregnant (is that what happened?) and to have looked at my husband’s two older boys who are NT and thought, well, there must be something wrong with me then. If truth be told, I secretly thought my advanced maternal age (now 40) not only gave me twins (my aging confused body split its embryo in two) but is also one of the main reasons my boys have delays (old eggs).

Well, today is a new day and I’m tired of thinking about the whys. I adore my children — beautiful, confounding quirks and all.

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