Archive for special needs

Tower of Babbles

Posted in Autism, Motherhood with tags , , , , , , , , on December 15, 2008 by Ms. Ex

My sixteen month old baby B has started babbling!

Doesn’t sound much like news, does it?  But he goes around laughing and talking all the time, and even repeats back to me the words I say to him.  While looking me in the eye.

My four year old E never did these things.  At some point, his trajectory changed.  He did not imitate me, not even my facial expressions, not even as a baby when it should be reflexive.  Except, he did say ‘tractor’ for a short time.  And here  I thought my daughter’s first word was telling.  (Did you say, ‘tattoo’??)

Instead of talking, E walked at ten months.  He conquered steps at twelve.  When he was this creepy, walking baby (you know what I mean – a cute little baby head  should not be on top of a biped.  It’s weird.), he would push a doll stroller around our driveway, rain or shine, heat or cold.  That’s what he wanted to do.  I would read and watch him, or do dishes and look out the window at him, and there he would be.  Pushing. A stroller.  In circles.

My oldest child is twelve years older than the next one, so I hardly rememberbed what it was like to have a baby.  With E, I looked up developmental milestones, and noted that he was way ahead with gross motor skills.  As for the other things, well…we can chalk that up to eccentricity, right?  It’s not as if he doesn’t have a wealth of familial sources.

Then along comes baby B.  Sweet.  Happy.  Smiley!  Baby B.  He sleeps.  He nurses.  Not like a meth head or junkie, but like an infant.  Who can quit whenever he wants.  Really. And round about one year old, I noticed some strange sounds coming from his mouth.  Sounds very much like the ones I was making, with inflection to match.  Now, a few months later, he is a regular chatterbox.  His enunciation could stand improvement, but he talks up a storm! It is a completely different world than it was with E.  It’s fun, we laugh, we interact.  We communicate.

E is considered only mildly autistic and highly functional.  He does talk now, but only to people he knows well, and he doesn’t make much eye contact.  The thing is, he is so high functioning, we might never have pursued any help.  He might never have been given tools to reach his true potential.  People told me all the time, “Oh, boys talk later than girls, you’ll see.  Just wait.”  But something in me knew.  It was more than being late to things  (which he got from me, just so you know),  it was a different path altogether.

So, along with just not taking people’s advice, don’t let them persuade you that you are wrong.  We mothers (especially).  We grew these children inside of us! We released them into the world, provide their nourishment and love and everything they need. If something is niggling at you, or you see something in your little one that concerns you – ask someone about it.  Do research.  And you keep asking the questions until you get an answer you feel confident about.

You must do what will work for each one and for your family as a whole.  And follow your gut.  We are the ones who know our babies and know when something is different or wrong.  And also, when things are just right.

Punctuation

Posted in Autism, Motherhood with tags , , , , , on November 20, 2008 by Ms. Ex

My babies are curled into me, in that space between chin and thigh that forms when I lie down.  We are a comma, a parenthesis at the end of a very long day.  I have yelled and grabbed and stomped and slammed, and the day is not quite over.  Now we just have to settle the one who elicits all the storminess from me.  He lay still and sweetly silent for a moment, then something inside him says, “Now,” and he reaches out to pinch, or bite. Or he rears his heavy head back and it meets a smaller head.  The struggling begins again until it exhausts itself momentarily in a collapse of teary sobs, and once more we mark the end of something, still and curved in the dark.

I love the comma, the parenthesis, the ellipsis.  The trailing off or the pause.  And I long for a day with no exclamation point.

A Family of Autists

Posted in Autism, Motherhood with tags , , , , , , , , , , , , , on October 29, 2008 by Ms. Ex

“Artistic?  He’s artistic? Well, I guess he gets that from you.”

“No, Mom. I said autistic – they told us he’s autistic. And he has ADHD, but I guess we already knew that.”

“Oh. What, because he has tantrums? He’ll grow out of it, you’ll see. Your brother was like that, he would hold his breath until he turned blue and passed out, and now he’s perfectly…um…well, anyway, I’m sure he’ll be fine.”

And maybe he will be.  Little E of weaponry atop the china cabinet fame. Little E with the big personality, with the adorable quirks, with what looks like a slight touch of sociopathy. My baby, my little guy.

I always say he was different from the very first day he was born. He cried inconsolably. He did not look at me. He never smiled. He would push a baby stroller around our driveway for hours on end, all by himself, no matter how cold or miserable the weather. I’m talking fourteen months old, here. It was the only reprieve I got from the incredibly overwhelming need for touch he had.

I realize that is a different thing for an autistic child, needing touch. But it is not that he’s affectionate, necessarily, but that he’s touching me to fill his own black hole of…something. Craving?

We spent hours with the doctor, his resident (intern? I got confused in the introductions part of the journey today), and his nurse.  I went hoping to finally get some direction, some idea of what E’s issues are, if any.  And I got some direction, some ideas. And some extremely difficult news.

It’s really not as if I didn’t know. I think I have known on some level for a long time, but I also kept believing that I must be wrong. It is so mild, surely it must be something else. Something less…permanent. You see, I went in with this child that, despite the soul-sucking challenges, I have managed to parent fairly well considering our personalities. Mine being obsessive, his being the same about different things. I went in thinking that maybe this crack team of experts would say – “AHA! We know exactly what you need to do to keep E from dislocating the arm of his little brother and giving you another corneal abrasion, while simultaneously convincing him to eat something that is not brown.  Or white.”

I left knowing my son is a hair’s breadth from geniosity (geniusosity? geniousness?), but cannot draw a circle. That he can learn to read, but might not fare well making friends. That my gorgeous, precious, spirited boy is now my gorgeous, precious, spirited, autistic boy.

It is a relief. It is a sentence of some kind. It is the end, the beginning, the middle of long roads ahead. I cry. I stop. I form plans. I research. I cry some more. We mothers, we like to know. But, by the very nature of our jobs, we also sometimes like to play pretend, just a tiny bit longer.

I Need

Posted in Motherhood with tags , , , , , , , , on September 25, 2008 by Ms. Ex

Needs. We all have them. I certainly do, and my children do also, especially E. He has special needs, high needs, extra needs and superfluous needs. His needs buffet my body, my mind, my patience, and suck every bit of energy I might otherwise have had for things like, say, brushing my teeth.

Now, I know the adage about want vs. need, and some of the problem is one of being okay with “good enough” parenting. To survive, a child certainly needs some things – food, water, perhaps clothing and shelter, and even love.  Failure to thrive is a recorded illness, born of neglect.  Babies sometimes die from lack of touch, even when the rest of the necessities are provided for.

But what about those things that seep out from deep inside of us?  Those drives that we can hardly contain, let alone triumph over?  For instance, I need reassurance that I will not be abandoned.  I do not mean an occasional sweet-talk-lite comment about always loving me.  I mean concrete words expressing delusional certainty that nothing will ever cause separation.  In that same way, Ethan needs contact.  He needs skin on skin, no regard for personal space contact of the sort that will suck a person dry over the course of a very short time, like twenty minutes.  I am constantly covered with bruises and have developed an over-responsive flinch reflex, much like a victim of abuse (okay, so maybe that was already there, but still).  I do not think that I have that kind of reassurance to give, at least not without sacrificing mental and physical health.

All this to say, I might not always, or even usually, be the kind of mother I envisioned when I was in the planning and manufacturing stages of parenting.

I used to be one of those people.  You know them.  They look at you in the grocery store when your children have gone from Mogwai to Gremlin in six seconds.  They give you the glare, the one that tells you you are a compleat and utter failure (compleat because these looks, for whatever reason, are accompanied by a British accent maybe reminiscent of Jo the Super Nanny.  Or maybe that was just a dream…).  I have doled out that look many times from the comfort of my non-child-having state, or at least the first-child-is-so-good-I-don’t-see-what-the-big-deal-is state.  Then came number two.

Now, when I get that inevitable glare in the check out line, in the coffee shop, in the bookstore, the doctor’s office and the local pub – I look those idiots in the eye and say, “It’s hard to raise a leader.”

Nothing Routine About It

Posted in Motherhood with tags , , , , , , , , on September 13, 2008 by Ms. Ex

I recently read another mom’s blog post about morning routines. I started to respond, but after about 400 words, I thought I should exit graciously and perhaps use up cyber space on my blog to share my own super-duper-fabuloso *MORNING ROUTINE*. Here goes.

Specs: Mom, 15 year old girl E, 4 year old boy E, 13 month old boy B, Somewhere in the Twilight Zone, Southwest, VA:

I am going to make all you moms and dads feel like the Queens (and Kings) that you are. Alarm? I can no longer sleep past seven even though I don’t go to bed until midnight and still get awakened at least three times by one child or another, since I am at the advanced maternal age of 37 and have old people’s insomnia. I don’t work outside the home in the morning, so I only have to get anyone ready to leave the house on Monday, Wednesday and Friday when E man has preschool, and it’s usually not a problem, since I slept in the clothes I had on the previous day. I can just roll out the door and none of the other moms know because they didn’t see me the day before. Also, I don’t really get to brush my teeth, but no one at my son’s school is terribly friendly to the strange mom so I don’t have to talk to anyone.

I noticed that a lot of you have wet hair in the morning. I solved this problem by shaving my head. Since I never brushed it anyway, it really works out better for me aesthetically.

The four year old doesn’t eat anything except brown and white foods (can you say, “high needs”?) so breakfast, if I remember it, is usually waffles or some other carbolicious delight. And of course – coffee for me. I save time by making one large pot and pouring myself cups from it over the course of the next 2-3 days and reheating in the microwave. I find the flavor is best on day three.

While Mr. High Needs watches “his show” (whatever I can find that suits him at the moment) I nurse the baby into oblivion, since his suck emergencies seem to peak in the morning. While he happily depletes whatever is left in me after his all-night marathon, I answer email and deal with a nonprofit for which I (of all people!) am the treasurer.

When I finally glance at the clock and realize we have five minutes to get out the door and get to school, E will usually say something like, “I want to walk to school today, Mommy,” or, “I have to go poop.” Mamas, I *wish* he could read in there, because at least that half an hour he spends on the potty would be productive, educational time. Instead, we all go in there with him because he cannot be alone even for a minute. I bring a book and the baby and some toys, unless I decide to let baby B play in the cupboard under the sink with the opiates and antidepressants and the cleaning products, and this is where I get all my reading done. Thank you, Ariel Gore for being such a quick, fun read! For obvious reasons, I also love essayists like David Sedaris, since I can devour a few of them in the time it takes E to perform his morning ablutions.

I am thinking of homeschooling, mostly because I doubt we will ever be able to get out the door on time. At least at home, I won’t be in trouble for tardiness, and no one will ever know how long it’s been since I showered.

OCD

Posted in Uncategorized with tags , , , , , on September 12, 2008 by Ms. Ex

Eights are good because they are round and go on and on and they hold everything together.   Twos and fours are bad they feel fuzzy in your mouth and when they are put together they become especially bad.  Threes are good but the girl (who is like me) avoids them because they are red.  Sevens make me happy and calm.

Did I read that sentence correctly?  I’ll read it again.  No, I think I am remembering one of the words wrong, I’ll look once more.  I have it now – but no I need to make sure that word is the right one, just one more time I swear I will not turn the page back again after this last time.

My hands are sticky, I should wash them.  I don’t think I got it – they still feel sticky, coated with worldly grime.  I wash them again.  Maybe my towel is sticky, too.  I will wash them once more and use a new towel to dry them.  Now I am typing and they are getting that way again – maybe it’s my keyboard.  I have to wipe it off, clean it.  Now I’ve touched a cloth that was used to clean something and I must wash my hands again.

Baby B looks like he’s not breathing.  I should check to be sure.  I can’t hear him!  I’ll just be very still and lean down near him and listen, but no – I still can’t hear anything.  I look and look in the dim light but I can’t see anything moving, so I place my hand on his back to feel but the movement is absent, or else too subtle.  So no I shake him gently to get a response and then he is crying and I know he is alive.  This will happen three or four times each night.

The rhythm matches my steps as I walk, but there is something off, my cadence, or the accent is on the wrong beat.  I begin the tune again in my head and walk and try to make the steps match the words and the music but I can’t quite get it and I have to start over again.  Then, too late, I am at my destination and I must discreetly place my feet just so, walking in place until the beat has been satisfied and the beast sated.

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