The Fly in the Windex
July 19, 2007
So it's been a full week since Noah's appointment, since this relatively minor, unbelievably common little thing swept into our lives and just completely trashed the joint. We're still at least a week away from an evaluation and a plan of action, which makes me feel like we're standing still. Except that we're flies, and we're standing in a puddle of Windex, wondering how the fuck we got into this mess in the first place.
Not that I would know what that looks like, or anything.
*cough*
*spritz*
*maniacal laughter*
Anyway. I've spent the past week analyzing and over-analyzing Noah, feeling incredibly guilty for over-analyzing Noah, and wishing I could just go back a week when it was all just a nagging worry (a nagging worry I was perfectly able to push away with a dollop of denial, as evidenced in this post, where I expertly masked the fear that prompted me to make the appointment in the first place by blaming "them" and the easily-scapegoated "they") instead of a nagging question mark of Is He Okay And Why Is He Doing That Weird Thing?
I've also spent the past week going on sangria-soaked playdates, making Thomas go round his wooden track a bazillion times (no, we don't have the killer lead-paint trains, I am sure of it, thanks), emailing with friends and strangers (if I haven't responded to your email yet, I apologize) and shyly wondering if any of those nice strangers would like to go on a sangria-soaked playdate with me, or if that's a Weird Thing, even if I promise not to rubberband a flyswatter to your toddler, unless you are okay with that.
I was tempted to leave comments open on a couple of last week's posts. (I close comments after I post something new since I've found that's the most effective way to keep the conversation from heading south once the Random Drive-by Googlers arrive or from later discovering that some extremely sensitive spambot also has a few suggestions for helping speech delays, all of which appear to involve ora1 s3x with h0t s1uts.) The stories and experiences described there are invaluable and anybody who is dealing with any sort of developmental delay, major or minor, should read them. We have doctors in this crowd, did you know that? Teachers? Speech pathologists? I should alert my ad people that hot damn, I think some of these people can read after all.
If I may poach and republish some of your brilliance for my own nefarious, run-on-sentence-loving reasons, I wanted to highlight this comment from Helen:
I started off reading this post and thinking just what you said some people would think. I have 2 autistic sons and find myself getting irrationally insulted every time I read of another parent who thinks this is the worst thing that can happen. Then, THEN I stopped and caught myself because hell, I cried BUCKETS for WEEKS and months when we first knew that my silent Isaac, with his obsession for neatness wasn't just the best baby in the world who tidied up after himself a lot but was autistic oh my hell.
Seth, with his aversion to food and don't put more than one kind of food on the same plate or the sky will fall in but hey chameleons should be primate because they have thumbs and why don't all 2 year olds think this way? Wasn't a genius with eccentricities but gasp autistic in his thinking.
Now? Now they are 5 and 6, they ARE just tidy and eccentric and genius and just the way they are.
You should cry if that is how you feel, throw things if it helps, hate the tidy lines of toys, wish he would talk in brilliant sentences...and then let it all sink in that he is glorious Noah, who is just as he is. The day you look at him and imagine how dull life would be if he were just like every other kid...then you'll read posts by other moms worried about these things and feel a bit insulted because who the hell wouldn't want a kid exactly like Noah? Who would want their kid to be 'ordinary'?
My Isaac is so different from other kids, he stands out like a sore thumb but everywhere we go he is adored, his classmates adore him, his teachers weep at the thought of him graduating, he is divine. I shudder at the idea of him being at all any other way. Seth (6) is hysterical in his professor like way of thinking, skinny little nerd boy who couldn't ever be like other 6 year olds. Wouldn't change a thing. Noah is perfect, whether he talks or not, whether he has 'issues' or not. Divine, funny, delicious boy. Lucky you.
(Don't you just want to soak all that mama-love up with a sponge? I just revel in the loveliness.)
New parents are afraid of autism, it's true. And anything remotely autism-like. Probably irrationally so. It's partly because we don't understand it -- I mean, hell, I'd say most of what I used to know about autism came from a Babysitter's Club book I read ages and ages ago, even though I'm not sure the author knew that much more about autism other than what she learned from Rain Man. The stuff I remember scared the crap out of me for years -- the brilliant, adorable baby girl who just shut down, practically overnight, around age 2. Who didn't talk at all, who flapped her hands and never made eye contact and who hated being touched but could play the piano beautifully and do that weird trick with knowing what day of the week any date fell on and never, ever got any better.
In short, autism = one-way ticket to freakhood, a bogeyman who came in the night and locked your baby's brain up in Rapunzel's tower, never to be released.
I obviously know a lot more now. Mostly from blogs. Autism is...well, it is what it is. It's not a death sentence, or some horrible, insurmountable killer of dreams...for many kids it's just a necessary label to get them the help they need, and with that help, a label that may one day fade back to "quirky."
As Karianna said, "a label is just a word. It doesn't need to be a whole sentence unless you make it so."
(By the way, I put this in the comments but I know I'm probably the only person who actually read all those comments [twice!], but our pediatrician actually has an autistic son. His son is grown now, and even attends community college. He [our doctor] is considered an expert in autism and autism-spectrum disorders, so no, I don't believe he's just jumping on the sensory-processing bandwagon because he got sent a brochure about it, and gee, this brochure sure does sound convincing-like. He made it very clear that he is certain Noah is not autistic, but definitely exhibits signs that his delay is neurological in nature.)
(We're totally getting Noah's hearing checked anyway. I mean, I love our doctor and all, but still. We're in charge of things around these parts.)
(Also, I had tubes in my ears when I was five. I was practically deaf before, and my mom loves to tell the story about how she brought me home, turned on Sesame Street only to have me clap my hands over my ears and complain about how LOUD the television was.)
Jesus. What was I saying, before I went all parenthetical?
Right. The fear.
You know why I'm afraid of autism? Of delays and labels and illness and stuff that just ain't right with my kid?
Because I am afraid of myself. Of what I am capable of, of what I can handle, and that it won't be enough. There.
I woke up the other day with a fantastic idea. I could go back to work. At a real job, an office job. I could put Noah in a really good daycare center, where he could spend time with kids who talk and teachers who have a damn clue how to handle his tantrums and I could get dressed up and spend time with adults who talk and do things I have a damn clue about, like proper subject-verb agreement instead of teaching a stubborn-ass toddler the sign for milk.
Would that be bailing? Or just recognizing my limitations? I'm not even sure.
(God, I took a break to make Noah lunch and am already rolling my eyes as I reread this. I certainly have a knack for making every little thing into the end. of. the. freaking. world, don't I?)
I know things will get better. I know things are honestly not that bad now. I know the worry will fade and I'll once again look at Noah as THE AMAZINGLY AWESOME NOAH, WHO ENJOYS ABALLS AND KISSES AND HAS THE BEST LAUGH IN THE ENTIRE UNIVERSE instead of this little ball of mystery quirks and frustrations and other things that I might be missing.
We all want our children to be perfect and beautiful and happy and brilliant and beloved by everyone they meet. (I'm projecting wildly here, yes, but bear with me, I've officially been an expert at this for a whole seven days now, har.) It hurts when you're told something different, be it a speech delay or ADHD or a heart problem or even just a bunch of mean kids at school who pretend to wash the slide for cooties after your child goes down it.
And it's scary when you're the grown-up, the one who needs to be strong and wise and tell them that everything is going to be okay, even when you don't feel strong or wise or know for sure if everything is going to be okay.
When the mean kids at my school pretended to wash the slide for cooties after I went down it and followed me to the swings with their invisible cans of cootiespray and then to the monkey bars and until I just stood in one spot by a tree for the rest of recess, I went home and I cried on my mom's lap for hours. I snuffled into her shoulder while we rocked in the same chair that I've always rocked Noah to sleep in. And she was strong and wise and told me that everything was going to be okay.
And it was.
I'm confuuused, because one minute we're all on this speech delay subject. From this we jump to AUTISM. But then "no" doc says NOT autism. But then still the subject of autism. And what quirky things does he do exactly? Because we started with the speech delay, but then somehow there is this strong hint of other behavior. Are we just over-analyzing everyone elses over-analysis, because hey, we are female and we do that. Ok men read this and comment too sorry. But how did we go from speech delay/walking on toes to THIS. Because there is Other Stuff going on with Noah?? That isn't in your blog maybe? Which is fine. But if not...did we get waaaaaay ahead of ourselves and have a group autism panic??? Let's all take a deep breath and take this One. Day. At. A. Time. Sigh. Try not to freak Amy out. I tried to distract her with the maggot post, it didn't work.
Posted by: Tj | July 20, 2007 at 01:08 AM
You're an amazing mom.
My son is growth hormone deficient and has to take daily shots. It just kills me when I go into his classroom and see how much smaller he is than the rest of the kids, or when he asks why he doesn't look like a 5th grader, or why he's so short.
When he was a toddler, they threw the autistic word around a lot because of his behavior and speech delay. We made it past that hurdle, and now there's something new. I imagine that in parenthood, there's always going to be something. I guess we just have to find the best way to deal with it and get the help we need. And a few tears along the way don't hurt. Hang in there!
Posted by: nila | July 20, 2007 at 04:46 AM
Hey Amy,
I just wanted to say that I think you're fantastic. It's people like you that make me think that maybe, just maybe, I could be a parent. That it would be all right.
I read another blog called Schuyler's Monster written by a friend of a friend. His daughter has a fairly serious disorder (Congenital Bilateral Perisylvian Syndrome (CBPS)) and he write a lot about what it's like to parent this magical, mute creature that is his gorgeous daughter. (He actually has a book coming out soon.)
My boyfriend and I both read it and we often talk about how it's simultaneously reassuring and terrifying to read about his family's experience. You might like it, go here: http://www.schuylersmonsterblog.com/
Posted by: Sils | July 20, 2007 at 08:45 AM
TJ - I can see how you're confused...discussing autism in this post was a bit of a tangent, mostly because I really wanted to talk about Helen's comment, which I freaking loved. I think I may have clouded the issue of how all this relates to NOAH, SPECIFICALLY, because the specific diagnosis doesn't, but the feelings expressed for her sons totally do.
There ARE other things that Noah does that have us concerned (to put it mildly), but yeah, I think we're overreacting because we're scared this isn't some kind of cut-and-dry speech delay. Why? Because we're his parents, and we think he's perfect and we want him to rule the fucking world one day.
But! I'm not even going to talk about what those things are, because we ARE over-analyzing and until we've discussed these "quirks" with a professional and had him fully evaluated, there's no point in documenting the Week Your Parents Were Convinced You Were Autistic Because Of X, Y, & Z, But Good News! It Turns Out Your Parents Are Just Sort Of Nuts.
From what I've learned about the sensory processing side of speech delays, I think our pede was spot-on. And the good news is that EI will help and probably even solve everything.
But we're not IN EI yet, and two weeks of limbo is a long time to let parents simmer in the worst-case scenario, yanno?
(And Joy, thanks for all the tips. You can be expecting a long and wordy-type email from me soon.)
Posted by: Amalah | July 20, 2007 at 09:03 AM
I just wanted to say (and I meant to say it earlier but everyone else just did it so well) that I am sorry you are going through this right now. I understand exactly how it is to want your child to be normal and average in every way, because no one wants to think their child will have to struggle or suffer, even in a minor, sub-set-of-normal kind of way.
A year and a half ago, we discovered our oldest son is dyslexic and dysgraphic (and this was after years of my asking his preschool teacher, his kindergarten teacher, his first grade teacher if there wasn't something amiss with his writing, etc. and being assured, no, no, he's fine) and I cried for weeks after this discovery. If anyone said, "dyslexia" I burst into tears and imagined my otherwise brilliant son flipping burgers as an adult or turning to drugs in junior high. Finding out about his dyslexia was very "end of the world" for me, so I completely understand how you feel. And while anyone could make the argument that there are many worse things than being dyslexic, this meant that the world was only going to be that much harder for my son. And just knowing that a chid will have a more difficult road than others is enough to make any mother cry--no matter how much "worse" things could have been.
But you are right--things will get better. You will get through this just fine. My son is in a good dyslexia program at the school and while school does present unique challenges for him (and it always will. Dyslexia seems to affect many areas of his life I never considered and I do have to be a very strong advocate all the time), he can now read at his grade level and at times, he even reads for pleasure. He is also an incredible math whiz and wants to be an engineer, which helps me dispell my burger-flipping fears. But those early weeks of discovery were very difficult--even if it wasn't cancer--so just so you know, we are all there for you.
Posted by: Ripplequeen | July 20, 2007 at 09:19 AM
How lucky are you that you've got a speech therapist reading your blog! I agree with everthing Joy said above. That's exactly where our therapist started with our son.
Now, is there an audiologist lurking out there somewhere? LoL.
Got to add one thing though - make sure you ask around and find a very reputable ENT & audiologist to screen Noah's hearing. And ask questions! Our first one missed Ryan's hearing loss for 5 years until the school district screened him, as required by law before releasing from Early Childhood Education, and finally caught it.
Missing the hearing loss led us to screening for autism, which led to a lot of unneccesary heartache and stress while we waited 6 months to get an appointment for the screening process. All of the research I did had me convinced he was autistic to some degree. Now I look back and can't imagine how I ever thought he was autistic. That's how much therapy helps!
Thanks for opening up to us. You've got a great support group going here.
Posted by: Lynda | July 20, 2007 at 09:25 AM
I loved Helen's comment. And I want to thank you for this post. A lot of times, I feel people apologizing on their blogs for being afraid when things happen to them that they didn't plan. I've seen people get slammed in their comments for articulating anything but acceptance if their child must go through testing and evaluation for a condition, be it medical or behavioral.
So thank you for writing this, for showing that it's okay to take the time to have fear for your child and of your own potential limitations and to allow that fear to run its course.
And believe it or not, you are stronger than you realize. And like Helen said, there may come a day when you cannot fathom a life without this situation in it, that that's okay.
Posted by: Andrea | July 20, 2007 at 09:28 AM
Sniff, snuffle, big hiccupping sigh! That was so sweet. We should ALL heed Helen's wonderful words, whether or not our own kids have "issues" (and we ALL have them in one way or another). What a beautiful expression of love she gave to us all. (Thanks Helen!)
And your words too, Amy. It's been a privilege to try and navigate this river of emotions with you -- I know that sounds weird, but knowing you like I guess I sort of feel I do, I like to think that if YOU can handle it, I can handle similar issues that might come up with B. You just are so brave and open and unabashedly HUMAN!
I adore your quirkiness, and I think that is exactly what Noah will exemplify.... how being quirky can be brave, beautiful, and brilliant. What a treat.
(Please squish that little buggaboo for me... NO, NOT THE FLIES -- Noah!!!) :)
Posted by: Katie Kat | July 20, 2007 at 09:32 AM
P.S. And by "squish" I mean hug, obviously. Don't go smackin' him with the bug gut covered fly swatter or somethin... :)
Posted by: Katie Kat | July 20, 2007 at 09:33 AM
P.S.S. And by "smackin' him" I don't actually mean to suggest you would STRIKE your child with a fly swatter... or anything else... I just meant that...
Oh, nevermind... HUG THE BOY! :)
Posted by: Katie Kat | July 20, 2007 at 09:34 AM
I hate the mean kids, too.
But, what I love? A Mom like you who lays it all out on the table, and isn't ashamed or afraid to admit she's scared. Because that's basically admitting your normal to the rest of us, and amen to that.
Oh, and Helen. Love you, too.
Posted by: Sherry | July 20, 2007 at 10:04 AM
I love your honesty. I don't have anything smarter to add than what's been said, but I'll end by saying that I will totally go on a sangria-soaked playdate with you.
Posted by: Dana | July 20, 2007 at 10:32 AM
Hot damn, you're a good writer. Your last couple of paragraphs brought tears to my eyes.
Noah's a lovable, gorgeous child who is lucky to have two awesome parents like you and Jason. I'll be thinking about you and praying that it gets better. If not, I can refer you to an awesome audiologist who is completing her audiology internship in Alaska. Roadtrip!
Posted by: JP | July 20, 2007 at 11:13 AM
here is another disturbing story of bad parenting! It's unbelievable what some of these sick parents will do. please respond th this blog entry to show what you think about it. http://www.mypetpeeves.com/plog/index.php/archives/2529
Posted by: samantha | July 20, 2007 at 11:39 AM
My daughter was at an at home daycare. Actually it wasnt even a daycare. It was my friends house.
She wasnt really taught anything. Just watched. The TV was always on... and she didnt really do anything to test out her 'motor skills'. It took my daughter to 16 months to walk!!
I put her in daycare at 14 months. Once she was there for about a month I was completely shocked. She started saying more words, doing actions to songs, and.... she started to WANT TO WALK.
Because she saw other kids walking, and talking and doing all these things she had never seen before!
Daycare was the best thing I ever did. Best choice I ever made. And its not giving up. Its realizing that your child needs more. More interaction. Daycare centres are amazing nowadays! It blows my mind.
Now she is 2, completely potty trained within a week of turning two.. and is speaking ALOT!
Mind
Posted by: April | July 20, 2007 at 11:46 AM
Your comment about going back to work and using daycare brought tears to my eyes because it mirrors the fear I feel that I am going to screw up this parenting thing and that maybe someone else would do a better job. I LOVE my daycare person, and she remembers to do things like wash his hands and not let him put shoes in his mouth and she sings to him, while sometimes I miss him so much while I'm at work that I can't do anything but stare at his perfect face while he plays. My son was 9 months old yesterday and I still cry nearly once a week (sometimes more) about being back at work full time. So the point here is don't ever think that you aren't doing enough and that someone else would do a better job. (I'm writing this as much for you as for me...) If you think he could benefit from some daycare action then by all means do it, even if it's just a few hours a week. But don't put yourself in a situation that you've tried before and despised because you think you'll be a better parent. And now I'm teary again and I really need to stop reading your posts at work. =)
Posted by: Heather | July 20, 2007 at 12:51 PM
"We all want our children to be perfect and beautiful and happy and brilliant and beloved by everyone they meet"
This comment is so true...until we realize that what we really want is for our kids to be able to handle the crap. The kind of stuff you described on the playground. Because the world is so imperfect and if we want our children to be "happy" they have to know how to fend off all the other stuff. You'll teach Noah how to be happy and it won't necessarily be because everyone loves him...which they very well may!
My fourth child is severely disabled (infantile at age six) and although I don't like the label, I'm grateful for all she's helped me become. My biggest fear of having a child with issues is that I would be sad. I was sad for over a year. But I hated it...so I pulled all that stuff that I'd been taught by loving parents and friends and I got happy and joked and live moved on in a wonderful way.
Keep working it out...we can all benefit from your honesty.
Posted by: Kathy Gillen/ lessons from the laundry | July 20, 2007 at 02:09 PM
You are amazingly real. Thanks for sharing these thoughts.
Posted by: Sue | July 20, 2007 at 03:35 PM
I am SO game for a sangria-soaked playdate! I don't have a baby, but I do have an awesome very-kid-friendly dog. She's even more awesome because she KILLS FLIES for sport!
Plus, it might be my not-so-secret goal in life (I'm ambitious, eh?!) to hang out with you.
Posted by: Neena | July 20, 2007 at 03:36 PM
Oh dear, the waiting is the hardest part, isn't it? Our dear boy (now 4 1/2) wasn't walking or talking at 17 months. So we called Early Intervention...and waited...and waited. The doctor said we could just "wait and see" for a few more months. But then my friend (who has an autistic son and a son with an Auditory Processing Disorder) talked about how many YEARS of therapy they missed between all the parents in her autism support group because their doctor/friends/family dismissed their early concerns. If you think something might be wrong, the worst thing you can do is ignore it. But now you are waiting...for help...for answers...and I know that's really, really hard because you want to be doing something, fixing the problem. Not just waiting and reading horror stories of the things that could possibly be wrong.
By the way, our not-talking, not-walking boy was pronounced as "delayed" by the EI folks and got about 9 months of speech and physical therapy. Now at 4 1/2 he plays t-ball and can smack the cover off a baseball, run the bases, and tell you stories about the game until you want to cover your ears and scream "WHY DID WE WANT YOU TO TALK????" But even when he was crawling and silent when other kids were running and chatting, he was still perfect in every way and I loved him so much my heart would burst, just like your precious Noah.
Posted by: Lisa Marie | July 20, 2007 at 05:07 PM
Oh, Amalah...I have not read any of the above comments but I just have to say that reading about the cootie-spray instantly brought tears to my eyes and made me want to give you a hug. Also, the last two sentences of Helen's comment ("Divine, delicious, funny boy. Lucky you.") brought tears to my eyes. And Karianna's line ("a label is just a word. It doesn't need to be a whole sentence unless you make it so.") about labels? Eyes suspiciously moist. I hope someday Noah reads "THE AMAZINGLY AWESOME NOAH, WHO ENJOYS ABALLS AND KISSES AND HAS THE BEST LAUGH IN THE ENTIRE UNIVERSE" and knows, really knows how much his parents loved him.
Many prayers are being said for you all, including some by me. Take care.
Posted by: bethanyactually | July 20, 2007 at 05:31 PM
No matter who we are, there is always someone trying to tell us we are not good enough. I think the important thing is that the people who let us know are the ones doing it to help us.
After having all sorts of frustrations throughout high school, finding out I had a learning disorder in college was a HUGE relief to me. My family, however, took it personally and felt that I was fine. That the psychiatrist and counselors testing me were just making stuff up. Everyone got over it, though, and I ended up getting better and better grades as college went on. Oh, and graduated law school cum laude.
Sometimes, not having to be perfect is the most helpful thing of all. Because then you know the love is unconditional. And you, my dear, love your son no matter what. It's obvious even to those of us who only drop by now and then.
My thoughts and prayers are with all three of you.
Posted by: alektra | July 20, 2007 at 06:15 PM
My parenting mantra is "everything is relative". Our son was born with a penis deformity, which we thought was a much more severe kidney issue. Yes, my kid can pee and talk and laugh, but he has also had three surgeries before 2 and will always have to see a urologist every two months until he is at least an adult if not longer. Does he have cancer, no. Does he have autism, no. But our reality is this and we deal as we can. Your reality is what is happening to you and Noah. No need to compare. It is what you need to deal with. It takes a village and sometimes that village includes family and sometimes daycare. Take what you can get. Good luck!
Posted by: courtney | July 21, 2007 at 12:40 AM
you are so right on. you guys will tackle this with the same patience and perseverance as you tackled the difficulty with getting pregnant. and the same intelligence when you were trying to decide if you should work from home or not. amy, you and jason kick ass when it comes to OhMyGodWhatAreWeGonnaDo situations. you have conquered so much in the past, this will fall perfectly in suite with how you have always handled everything else. big hugs to you all... "Take pride in how far you have come, and have faith in how far you can go." - Christian Larson
Posted by: heidi | July 21, 2007 at 01:08 AM
O.K...I too am oficially de-lurking. I have been reading your blog for months now. You have the amazing ability to make me laugh and cry all within the same blog. As my mom always says,"You never stop worrying about your kids no matter what age they are." And I thought great my kid are only 3.5 and 9 months. I'm in for a lifetime of angst! I give you credit for acknowledging Noah's "idiosynchrasies".
As for that Sangria be verrrry careful. At least with the Sangria I make I end up crying and hugging everyone! Thinking will this be the last time I see them like they're going to die tomorrow! Yikes!
And yes we did have the killer Thomas trains, no biggie just send those trains back and get freshly-lead painted trains! I think the Chinese are on to something...Just my own conspiracy theory.
Cheers to you Amy!
Posted by: Christine | July 21, 2007 at 06:53 AM
Amy, just delurking to tell you how great of a mom you are, and what a lucky boy Noah is. I have been reading your blog since he was the size of a pencil eraser. I have followed yours and Noah's story from all around the world (I was in the military). I think I speak for everyone when I tell you, from the bottom of my heart, that everything will be okay. I only hope that someday if I have alittle boy of my own, I can be as good a mom as you have been.
Posted by: Emma | July 21, 2007 at 09:41 AM
What can I say that hasn't been said already here? You have amazing support. That's what I love best about the blogosphere. My oldest has Torette's, ADHD, anxiety, OCD, and LMNOP (I'm joking about the last part. It feels so silly labelling my daughter like that). I had all the same feelings as you when she was first diagnosed. Especially with the Tourette's diagnosis since my only experience was with those who have the severest form and shout out obscenities which is actually very rare. I didn't think I could handle it either. I have some bad days but mostly my fear of it was worse than actually living it. I can handle it after all. A mother's love is that strong and like you wrote, it will be okay.
Posted by: slackermommy | July 21, 2007 at 11:28 AM
oops, just noticed all my spelling errors. I meant to spell check.
Posted by: slackermommy | July 21, 2007 at 11:29 AM
Damn true - everything will be OK. Because it has to be.
Posted by: BOSSY | July 21, 2007 at 12:47 PM
Life is so heartbreaking and lovely, all at once.
There's a Israel Kamakawiwaole song that I just love called "In this life," and it says:
If the world stops turning
If the sun stops burning
If it all falls apart
I will know deep in my heart
that the only dream that mattered had come true...
in this life
I was loved by you.
Posted by: Suebob | July 21, 2007 at 09:04 PM
This entry is heartbreaking and heartwarming at the same time. I have twins, 9 months old and I worry about the same things you do. I worry they will be made fun of, that I will let them down or that I will not be everything they need. I worry about ADHD, Autism and everything else.
I think it's normal, hard but normal. We have put our heart, soul and every last bit of love into our children and you don't want them to be sad or hurt. At the end of the day, you are their rock, their strength and they love you just as much.
It will be ok because it has to be. You love him unconditionally just like he loves you and with that love it will be ok.
Posted by: Laura | July 21, 2007 at 10:01 PM
I am sure there is bountiful wisdom in the 130 posts before mine, so I won't try (I've got nothing, anyway. I'm one of those scared, new parents looking for every sign that something might be "wrong").
I just want you to know that I'm thinking of you.
Posted by: sarah | July 21, 2007 at 10:05 PM
My daughter, Audrey, has been my life's greatest teacher. There is a process - perhaps similar to grieving - that I went through. Frantic fear of the future. Anger. Denial. The NOT KNOWING. Then acceptance and moving forward again, with new eyes and a more open heart. I realized that if I let go of my expectations of Audrey, my family and friends, her peers, and allowed things to unfold, the resulting experience was better than I could have imagined. Yes, it is challenging. At 8 years old, she speaks very little, but she says the important things:
At night when we cuddle in her bed, she drapes a tiny arm across my neck, covers my face in sweet kisses and says "Love you, mommy." Ok, so it sounds like "wa woo mama" but I know what it means. I can feel the sincerity. "Hell! Hell!" she bellows at 145 decibels while perched precariously on a chair in the kitchen attempting to get to the pack of gum on top of the refrigerator. (Translation: Help! Help!) I don't care if she doesn't know what a triangle is. She loves and accepts everyone without condition. She waves and says hi to EVERYONE and is a random hugger. It's interesting to watch people's reactions - oooh, isn't that sweet - or - this-is-really-uncomfortable-call-her-off-please. She laughs more in one day than most people in a year. It sometimes makes me think she's the "typical" one, and the rest of us have the disability. I'm so grateful she's in my life, just the way she is.
No matter where you are in this process, try to release as much struggle and downward-spiraling thoughts and just look into Noah's eyes. All he needs now is a mommy who loves him. Really.
Posted by: Audrey2 | July 21, 2007 at 10:33 PM
I read the same Babysitter's Club book when I was 10 years old and decided I wanted to learn everything about Autism. I read books and articles and eventually ended up teaching at a preschool for children with developmental delays. Now, 15 years after my Babysitter's Club book days, I got my first job as a Behavior Therapist for children with Autism, SID, Down Syndrome, and a variety of developmental and behavior disorders.
One of the coolest things about the job is watching the kids learn how to sign for the things they want! We try to wait until they are really motivated for something and then give them as many chances to sign for it as possible. Instead of giving them a handful of their favorite crackers, we give them one at a time so they have to sign each time they want more. But instead of having the kids sign 'more' (which is pretty nonspecific), we have them sign for 'cracker' each time. They might use the same sign 20 times during a five minute snack break, but that's what we want since repetition is one of the best ways to learn! It works great when the kids are having fun with it and getting lots of positive reinforcement at the same time.
Also, my parents like to tell the story (to anyone who will listen) about how my sister and I used to have to interpret for our younger brother when he was 2 and 3 years old because no one else could understand a word he said. They spent most of their time asking us, "What did he say?" and "What does he want?" and somehow we always knew. Long story (and post, sorry) short, he's in his final year of college this year and he's going to be a teacher!
Posted by: Shenley | July 21, 2007 at 11:15 PM
I have a 6 year old with several special needs, specifically developmental delays (speech!!) and sensory issues. I don't want to freak you out and tell you all of my kiddo's *stuff*. I came to offer support and tell you how familiar every single one of your emotions are to me. Especially the 'can I cut it?' ones.
For a long time, I thought that 'someone' had a very sick sense of humor, because a looooong time ago I remember telling someone that I couldn't handle a special needs kid. Hahaha-HA! Boy did I ever prove me wrong! No one is more surprised than I am, at my ability to pull myself up by my bootstraps and figure it out, yo. :-) Now. That doesn't mean that I became SuperSpecialNeedsMom the minute we knew something was different about our boy. There was a lot (!!!) of denial. A lot of excuse making. A LOT of tears. There still are tears and tough days. We'll get back to that.
It doesn't happen overnight. There will come a time when you'll feel like you want more information and you'll dip your toe into the pool of 'what ifs'. Give yourself time to absorb everything you're hearing and learning now, there's no time limit.
Something that helps me is this.....reminding myself that what ever worry I have about my son right now, someone else is having a different worry about their kid. Their worry is just as big as mine, it's just a different subject. Kid stuff is kid stuff, no matter what it is. If you're concerned, it's a big deal.
Getting back to the rough days. You are going to have them. Please, allow yourself to have them. The 'get over it already' folks can SUCK IT. Until they go through something like this themselves, they'll never know how they would handle it. It's your blog, if you need to bawl your eyes out via the written word, there are many of us out here who will offer a shoulder and will SO wipe the running mascara off your cheeks. Parenthood is hard, whether you have a tip-toe walker or not.
I know your inbox is full of well wishes, and I don't want to add to the list of folks you reply to. Please know that I'm thinking of your family, sending all my good thoughts your way.
You can do this Amalah.
Posted by: DDM (Sonia) | July 22, 2007 at 02:15 AM
Hi Amy,
My last post did not post I guess. I am the aunt of a wonderful boy w/ Aspergers. He is fabulous.
My sister is a single mom and I have been taking care of him since he was 3 weeks old. When he was first diagnosed we were relieved. Finally, an answer. Then , we cried. It is normal and we had to give up the dream that we had in our heads.
Reality is much better anyway. This blond blue eyed wonder is a whiz at math,loves people,helps the homeless and cares deeply about the world.
We still wonder what the future will be for him .
Strangers are unkind at times and make comments.
One neighbor of mine said she would never want a child like Matt. How sad for her. he is a joy and a blessing. A gift. I was not sure we were up to it either. I work overnight so I can watch him after school .It is a lot of work with a large reward. Matt was also an organizer and would only play w/ yellow blocks etc .. he walked at 8 months w/ no crawling, slow to talk, stacked jackets in piles and when he got to pre school he was unable to play on the same level as the others.I know you can handle any answer that you receive. No matter what he is such a great boy and you are a great mom and nothing changes that fact. I live in Bethesda.Contact me at my e-mail address and I will give you my number. My 2 yr old niece is here and would love to play w/ Noah.
Hugs to all of you .... The bee
Posted by: the bee | July 22, 2007 at 03:00 AM
Amy, I preface this with assvice. We have autism all around here, and Noah doesn't seem to be autistic. At all. Maybe a little speech delay, but no big deal. Not to diminish what you are feeling, but you will all be ok.
BTW, we live in Napa, own a winery, and a pool. It's playgroup everyday. You are officially invited.
Posted by: Cathy | July 22, 2007 at 03:02 AM
Your mom was right. It will be ok, and you will find strength to handle it all. I am the cowardly type, and I found the backbone to hold back the world to allow my boy the space to grow at his own pace, in his own way, to fight with the school, get him the help he needed. He just graduated from high school with HONORS and is going off to a 4 year college next month. Noah will indeed be wonderful Noah, and you will be strong enough.
Madeline
Posted by: Maddie | July 22, 2007 at 10:54 AM
Wow, lots of love coming your way! Soak it in - being a parent is all about battling self doubt. XOXOX
Posted by: Alexandra | July 22, 2007 at 07:55 PM
After I read your first post about this, I called my mother and asked her if my nephew, who turns 2 this coming week, was talking very much. She's the Connor-sitter : ) Usually if I call and he's there I'll here him laughing maniacally or screeching for her attention, but have not yet heard any actual words from him. She said he says "This" while pointing at something he wants - particularly the fridge when he's thirsty - "dog" because there are two around him all day, and often will try out new words for a day or two, then won't say that word for a while. Momma, dada. And that's about it. So Noah is not the only child, by any means, who may be less verbal than other children : )
Posted by: Caroline | July 22, 2007 at 10:49 PM
I know you have had tons of great advice..When you need the right words they will always come.
Big hugs!!
Posted by: Sha | July 22, 2007 at 11:11 PM
I really like the way you write =) That windex thing made me piss myself laughing hah. Keep well.
Posted by: Dom | July 23, 2007 at 08:57 AM
A beautifully written entry for a beautiful blogger with a perfect son.
Posted by: Skyzi | July 23, 2007 at 09:08 AM
You have 143 comments already. You don't need mine, but I'm here anyway. My son (age 15) is blind and has Asperger's. One of my favorite web sites is Kristina Chew's Autism Vox at http://autismvox.com/
Hang in there, mom.
Posted by: Daisy | July 23, 2007 at 11:31 AM