4C, 4 Momma, 4D, 4A, and 4B

4C, 4 Momma, 4D, 4A, and 4B
Most of the Four me (and you) fam

Friday, February 24, 2012

Cleaning up, moving on

That "path to diagnosis" post really wasn't sitting well with me. I think my subjective opinion shown through WAY too much. I've redone, and you can view it here.

I'm on a little hiatus from Facebook, trying to dig my family and myself out of months of neglect. Between Thanksgiving and Valentine's Day, we had, as a collective group, 4 bouts of strep, 2 rounds of the stomach bug, 3 sets of swollen tonsils with fever that never amounted to anything, 2 ear infections, 3 sinus infections, a bladder infection, a renal ultrasound, a bowel Xray, a horrific drug interaction experience, and a general "living under a black cloud" feeling. The shit started to pileup around here in more ways than one: literal, emotional, temporal, and nutritional.

Add into that whole mess (and there really is no other way to describe it, I think), a HUGE Girl Scout project that I elected to do for my daughter and her cluster, room parent responsibilities for two kids, shuttling 4C all over hither and yon, academic hiccups with 4A, emotional hiccups with 4A, 4Daddy's work travel obligations, a wonderful friend battling her way back from pancreatic cancer with a host of scary setbacks, PTA obligations, and some gentle nudges toward a job for me, and I was stretched WAY too thin.

This is despite my promise to myself (again) not to overdo. To do less better and happier. I am a terribly old dog in this department. Apparently unable to learn new tricks.

All that's behind us now, and we're moving on. To be brutally honest, it sucked. REALLY sucked. We survived it, literally but not gracefully.

What does matter is that we're all still breathing. We all still love each other. We're all still mostly happy. We're digging ourselves out of the clutter and mess and dirt and grime (which never matter in this house, truly, until our feet stick to the floor and we can't walk three feet without stepping on a Lego, shoe, or book and we have fur growing in our toilets--how the kids LOVE to point that one out). I'm moving forward in the job department (but I can't share yet...stay tuned, I promise!).

We've made progress educationally with 4A. We've crossed one big hurdle for her emotional progress, and we're about to add a new component to her treatment and and a new doc to her team. We made HUGE progress on a physical milestone with her (posts on all of these to come, I promise). We're getting there.

I think this horrible winter has reminded me of a couple of things.

Life can be super hard, but that hardness is mitigated (for us) by love and faith and support and kindness. For those reasons, we are immeasurably blessed and thankful.

Autism is tricky. Just when we feel on solid ground, making steady progress, shit hits the fan from left field, rendering us shaky and confused and feeling behind. There really are no answers, in the right and wrong sense, and there are often times no resources (for us, at least, because of our Aspie's gender). What makes that all survivable is our wonderful team of super amazing and supportive docs and teachers and friends and therapists and family. Collectively, we are bigger and stronger than autism.

Stupid shit really doesn't matter. Really. It doesn't matter. I find every single day that the list of "stupid shit" is infinitely longer than the list of stuff that does actually matter.

Typical kids need stuff, too. It's often not as much or not as difficult to obtain or figure out, but they need it nonetheless. Everyone has needs, and everyone is entitled to have those needs met by the people responsible for them. Just because it's super easy for someone to stay on green all day without a single ounce of work on our parts, doesn't mean that he's not entitled to hearing how great of a job he's doing. Just because someone can get dressed all by herself without being told or asked or helped doesn't mean she doesn't need to hear how much we appreciate her. Just because someone doesn't have all of her words yet doesn't mean that she shouldn't get the things she's asking for when she asks nicely. Everybody needs. The needs are different, but that doesn't make them less worthy or valuable or important.

We were here first, 4Daddy and I. We started this whole thing because we loved each other, liked each other, and had fun together. Some days, I wonder where that fun has gone. It's our job to make that fun daily present in our lives and our children's live. We owe it to ourselves, and it's actually super important for them to see it.

This family really is the most important measure of our success. No matter how mean people are or hard life is, no matter how shitty or expensive our insurance, no matter how hard our choice to be a one-working-parent family, no matter how much we eat drive-thru in a week, no matter how high our pile of laundry, no matter how dirty our floor, no matter how behind we are on decluttering or paperwork or yard work, we are a family. A complicated, thoughtful, respectful, smart, uneducated, rude, kind, helpful, obstinate, amazing family. At our very worst, we always have that.

Thursday, February 23, 2012

Friends and work

Being the mom of an Aspie and her case manager, if you will, is like living in a parallel universe. Actually, it's more like living in two universes, neither all that parallel to the other, spending part of my time in the neurotypical world and the other part in the Aspie world.

I flex back and forth between the two fairly well, I think. Seamlessly? No. But, sufficiently? Yes. I can have (and did yesterday) an intense conversation with a pediatric neuropyschiatrist about the possibility of introducing a second med, the protocol for doing so, the possible efficacy and risks of the second med, clinical experience and success rates, synapses in the brain, and all things related to neurological and psychological development while holding a fussy toddler at bay with my knew, trying to cram a "ba-ba" of soy milk and get her ass to sit still and "watch horsey" on the TV while I chatted. Fun? No. Doable? Yes. I immediately hung up the phone, swooped my now overtired toddler into my arms, changed her poop, put on her jammies, and cuddled and sang her down for nap while reviewing the aforementioned conversation in my mind. Without missing a beat.

Super woman or super mom I assure you I am not. I have no choice but to live in these two worlds and flex between them. My children need me to be able to do it without losing my mind. Doing it is not the problem. It's the doing it "without losing my mind" part that's the problem.

It dawned on me the other day that the people I consider to be my closest friends are actually not friends at all. Friendly and supportive and wonderfully brilliant people. But, they aren't in my life socially. They are in my life through my Aspie. I love them as I would family members, and I talk to them more than I talk to just about any one else (save 4Daddy), but it's some sort of a weird and crazy feeling to realize that docs and teachers and SPEDs have taken over as the friends in your life.

Oh sure, we joke and chat and talk about our kids for brief moments before and after the meat of our conversations about 4A. But, this business that we do together has taken the place of friendship in my life.

I don't say this in a "woe is me" or "how miserable am I?" kind of way. It's truth. It's necessary. It's okay. It's preferrable. It is even, dare I say, enjoyable.

I think sometimes that this is another reason that God gave me autism in my life. He knew that I needed to be home with my kids for my sanity, but He also knew that I very much like exercising my brain, which I worked so long and hard (and paid out the ass) to develop. My poor brain would have but shriveled up and died in a sea of poopy diapers, sippy cups, Mario, Bubble Guppies, and Harry Potter. Sure, refereeing kids, molding them into decent people, planning and managing their constant neediness to be fed, keeping them in clothes that (arguably) fit and aren't filthy, shuttling them to and fro...it all takes work and brains. Important work. Important brains. Not to be devalued or belittled work and brains.

But, it is for me, sadly, not enough. God knew that. Hilarious bastard that He is at times. He knew I'd be losing my mind if I didn't have some intellectual work. So, He gave me a girl Aspie in a world where there aren't many others. In a world where resources for her kind don't yet exist. In a world where there's still a lot of misunderstanding about her, her needs, and her brain.

I'll be damned in that crazy goof didn't know what He was doing.

Tuesday, February 21, 2012

A hiatus of sorts

Hello friends.

I am embarking on a bit of a hiatus from the blog.

Things with 4A have been a bit rough the past few weeks, and it's left her and I both a little battered and needy. I also am working myself through some minor health issues, but this, too, has left me without much to spare for those outside of myself and my immediate family.

I will be posting here and there, but I am using this Lenten period to really take inventory of who I am and where, what, and who I want to be in the world.

My kids and 4Daddy also need me right now, and I need them. Sometimes, blogging gets in the way of that reciprocity.

I have also created a Four me (and you) Facebook page. Please feel free to "like" and join along.

I also hope to have some publishing news for you in the not-too-distant future.

Wednesday, February 15, 2012

Journey to DX, part 6: finding your family's "right" path to DX

Finding the right path to diagnosis for your child is personal, subjective, and private. You will have to decide in your heart (and your bank account) the right path for your family.

I can provide you with only one path, ours. It should not dictate yours. You will have to do the research in your own area to decide the best path for your family. I simply hope to give you markers or factors to consider in your own process of finding the right path. This post simply gives you an example of one family's decision-making process on the major issues involved. This is a really hard decision to face as a family. We made the best decisions that we could with what was available to us; you'll do the same.

My first draft on this topic was woefully one-sided and subjective. As such, I fear that it lacked credibility. Not wanting to "jump the shark" on grounds of credibility, I self elected to redraft. If you read the original version, you will (I hope) notice marked improvements.

We started our journey to DX with our local early intervention office because it was close and free. Our original concerns were gross motor; early intervention services quickly provided a PT, and our gross motor issues (the ones presenting at the time) cleared up in a matter of weeks. 4A was 14 months old at the time.

Great.

Fast forward 10 months, and we desperately needed help. 4A, just shy of 2 years old, was an absolute mess. She was extremely scripted in her speech. Her speech seemed programmed, not organic, and she constantly, CONSTANTLY repeated words and phrases over and over and over and over and over. She was ritualistic and rigid in her play and didn't "pretend" play in the classical manner. She screamed/tantrummed (not in the whiny, "I didn't get my way" way that most folks imagine but in a hysterical, hands over her ears, rocking way). Her eye contact was inconsistent but largely nonexistent. We desperately needed help.

We called early intervention services. They offered to reassess her. The wait for said help this educational route was 6 weeks or so.

Around the same time, we scheduled an appointment with a developmental ped at an outstanding autism diagnostic/treatment/research facility that, as luck would have it, is less than an hour drive from our home. The wait for this doc was over 6 months.

So, we had the educational system working while we we waiting for the medical one. (If you need info about the two routes to DX (medical v./& educational), here is a good link for you to check out.)

I think it was around this time, but it was honestly probably earlier, that we talked with our amazing pediatrician about how to proceed: medically or educationally. Where we live, there was no one qualified or trained to diagnose educationally at 4A's young age; I will be forever grateful to the early intervention psychologist who candidly explained that to us. To get an educational diagnosis, we were going to have to wait until elementary school. We also live less than an hour from the amazing, renowned autism center I mentioned above. To get a medical diagnosis, we were going to have to pay what seemed like a good bit of money. Because 4A was (is) a girl and because she was so high-functioning, our pediatrician advised the medical route for diagnosis.

What to do? What to do?

Our thought process went something like this. Elementary school was THREE YEARS away, and I didn't think we'd make it that long. We needed help NOW. Early intervention services' options for help (PT, OT, and social skills class) just weren't cutting it. They seemed woefully ill-equipped to address 4A's symptoms. The early intervention psychologist was outstanding, and she really saw 4A as "spectrum-y" from very early on. She just didn't have a way to provide services; I will always be grateful for her candor.

For us, the two more important pieces in our decision were our eventual relationship with her educators and an accurate and credible diagnosis. With regard to the former, we wanted 4A to enter school on our terms, with our assessment of who she was paramount and credible. We didn't want school trying to figure out who she was and what she needed, brushing her off as a problem kid or a kid with shitty parents. We wanted experts, medical experts, to decide who she was and what she needed and tell the educators. She was (and is) a girl, after all. Even folks who truly get autism don't always get girls with autism. At the time, we had no idea what her school would be like.

With regard to the latter, we needed to know FOR CERTAIN that 4A had autism. Because she was a girl and because she was high-functioning and because her symptoms appeared largely as opposition (and I will come back to this, believe you me!), we needed a gold-standard assessment by the most qualified person available in our area at the time to know whether or not she really did, in fact, have autism. Remember, there is no blood test. There's no way to know for sure. For us, we needed "for sure," and the medical route was our best chance of knowing "for sure" at her early age because we were not willing to wait until she started school and there was no educational diagnostician available to diagnose her at her age.

We decided, then, to pursue a medical diagnosis while waiting for an eventual educational one.

Now, this raises the interesting question of at what age a diagnosis is appropriate. Oh my! Experts can't even figure this one out, so I'm not even going to try. I will tell you this. Everyone involved from the beginning (docs and early intervention services) and those who joined our team later (educators) have all consistently advised that the longer you can wait for a DX the more credible it will be. When kids are young, a lot of the behaviors caused by a myriad of disorders (autism, bipolar, ADHD, etc.) can look the same or similar (and, I would make the very important caveat that this is more likely the case if the folks doing the observing are not renowned experts with loads of clinical experience).

We started super early. 4A was not yet 2 when we started our journey. Your child may be older. If s/he is older, you may seriously consider the educational route. It just wasn't available to use at the time that we started. We were unwilling to wait for elementary school because we wanted her to enter school on our terms and not run the risk of them misinterpreting her symptoms. If you remember, she had been asked to leave her first preschool, and she and her symptoms and her treatment plan had been woefully misunderstood at that school. Perhaps that shell-shocked us and made us irrational. I don't know. I do know that we wanted the very, very best diagnosticians available in our area at the time to do the diagnosing. For us, given our location and her age and her gender, those diagnosticians were medical experts.

Now, fast forward to third grade, and I know (I KNOW) that the school psych in our school would have given us a credible diagnosis. She's trained beyond even some of the experts at the facility where 4A was diagnosed. She has a long clinical history. She trained at the "best of the best." I did NOT know that when 4A was 2. Should we have waited for educational diagnosing once she entered school? I can't really say. I can tell you that we weren't willing to wait. Whether or not it all would have turned out okay, I can't know. I do know that her medical diagnosis was credible and thorough and accurate. It satisfied this wonderfully qualified and capable educational diagnostician such that she accepted the medical diagnosis without making her own. I can't tell you if that would happen for you. There is a fabulous piece you should read if you have questions or doubts about this, and you can find it here.

Here's the bottom line, friends. The tools both the medical and educational folks use are identical. The same. What may or may not differ is their experience with them. That is where you need to do your research. Figure out what tools they're planning to use. Figure out how much experience they have in using them on kids your child's age and gender. Do your homework. Don't just assume that they're qualified.

I will say this...a LOT of people seem to wait for school to do the diagnosing. A lot of folks wait for that because it's free. I have two things to say about that.

First, waiting until school for diagnosis should not mean waiting for treatment. Even if you feel you want to wait until school for diagnosis, start treating NOW. Figure out what works for your kid. Throw her teachers a bone. The less you send her along with an "I can't figure it out, but good luck" message and the more you figure her out and get data on what works for her, the better off you are all going to be: your child, her teacher, and you. This relationship that you're about to embark on with your child's school is a long and complicated one. Start out on the right foot, the one of respect.

Second, critically assess the money involved for a diagnosis. Only you know what your insurer will cover. Only you know what you can "afford." I use quotes there because I strongly challenge you to be very careful with this "can we afford it?" business. This is your child's education and future that you are talking about. The choices you make now are going to follow her for her whole life. Not to put undue pressure on you, but use that as one of your parameters in your decision making process.

We paid out-of-pocket for all behavioral psych treatments and the ADOS. A kind case manager at our insurer saw 4A's file float across her desk and decided to dig a bit deeper. When she called us FOUR YEARS into the diagnostic process, I had to laugh and ask her why the hell she called now after four years? When she heard all that we had been through in our quest for answers, she pulled some strings and got our neuropsych profile covered.

The numbers are really irrelevant, but let's just say that we probably could have paid for a year at community college with what we spent on 4A's diagnosis. It was hard. We struggled to figure it all out financially. We did without a LOT of things (clothes for ourselves, vacations, furniture, lessons for the kids...a lot of things). When I look at that money, I actually divide it in my mind over the 13 years that she'll be in school. That yearly amount then becomes much easier to swallow.

But, all told, if we had it to do all over again, I would do it exactly the same way. I have not an ounce of regret. We know. We know that she has autism, and we found that out earlier than we would have had we waited for educational diagnosis. There are no questions. That peace is priceless. And, 4A is doing so beautifully that many wonder if she really even does have autism. All that money, all that sacrificing, all that time allowed this beautiful progress and adjustment and development and presence in her life. That, too, was worth every penny.

Now, here are some addendum...

(1) What do you do if the school folks have "labelled" your child with autism, but you don't think she's on the spectrum?

First, hugs, my friend. A DX of autism, when you weren't looking for it or suspecting it, probably hurts so very much. I would recommend a couple of things.

First, figure out whether your child was screened or diagnosed. There is a difference! To figure out the difference between the two, look here. Ask the examiners. If they don't answer to your satisfaction, ask for a list of the tools they used. These will look like a bunch of alphabet soup. See below.

Second, figure out what diagnostic tools were used. If you are drowning in the sea of alphabet diagnostic soup, here's a (partial) good list of diagnostic tools with information about them.

Third, inquire as to the examiner's clinical experience with using these tools. It is theoretically irrelevant whether a doc or an educator performs the testing. What is important is the examiner's experience in using the tool at issue.

Fourth, it's okay to ask for a second opinion, especially if you feel that the examiner was not altogether experienced with the tool used or doesn't have a long clinical history. Ask for a more experienced examiner. Ask for a different module of the ADOS. Ask those hard questions, respectfully, of course, because this is YOUR kid. If you've received an educational diagnosis of autism, you could certainly seek a medical assessment. The neuropsychological profile is the gold-standard diagnostic tool. Find yourself an outstanding developmental ped with a long clinical history (and if your daughter is a girl, find one who has diagnosed girls). Folks in your local ASA chapter (Autism Society of America) will know who the good/credible docs are in your area.

Finally, try super, super hard not to think of this as a label. It is an assessment of your child's neurological capabilities. As such, if it's done accurately by an experienced examiner, its results will give you and future educators a lot of information on what your child needs to succeed at school. Because his/her wiring is different and you now have proof of that, s/he will need different supports and tools than neurotypical children need to learn the same skills. This will actually be a great thing.

(2) How do I really know if my child's diagnosis is accurate?

I am not the person to answer this question because I am not a doctor or an expert. If you follow the little flow-chart that I made above, you will have better clues as to whether or not your child's experience was credible. If you are at all in doubt, try to find a really credible developmental ped or school psychologist who can help you get to the bottom of all of it.

(3) How do I decide whether or not an educational diagnosis is enough?

You have to ask around, do your homework, do your research. Start here. Figure out the clinical experience of the available diagnosticians. Search your heart. Inventory your pocketbook (but be VERY careful to be really critical about the expense). Let me put it this way...If 4A had already been in school and if we knew that our school diagnostician had a large clinical experience with the tools she was using on kids of 4A's age and gender, we probably would have gone for it.

As to whether or not you want to be in the driver's seat regarding diagnosis before school starts, you'll want to talk with your pediatrician and your local early intervention services office. Ultimately, the decision is yours, but they can better help you identify the parameters for making it.

(4) What is the difference between a medical diagnosis and an educational one?

To a large extent, they are very similar in that the same or similar tests are used to assess the presence of autism. As I said earlier, theoretically, it doesn't matter who does the assessing: a doctor or an educator. What does matter is the examiner's clinical experience and skill in using the tool. You'll have to assess who has the highest level of experience and skill in your area for yourself.

But, in a very broad nutshell, an educational diagnosis is made pursuant to Chpt. 14 of the IDEA (Individuals with Disabilities in Education Act), and a medical diagnosis is made pursuant to the DSM-IV (as of this writing). A child can only receive services at school if she has an educational diagnosis of autism. For us, our medical diagnosis of autism made the educational one an ipso facto slam dunk. I can not speak to anyone else's experience.

Monday, February 13, 2012

ASD blessings

Nothing earth shattering today. Just wanted to pop in to tell you how wonderful it is to be on Team 4A.

Team 4A consists of some awesome teachers, past and present, who understand, with mere quick explanations, who 4A is and why she does things the way she does them. They modify simply because they trust us and Dr. Steve that mods are necessary. They respect 4A and her wiring. They ask questions. They want to learn about her wiring and how to help her be the best that she can be. They love her.

Team 4A consists of some super supporters, those who send along kindness and encouragement but also those who pitch in on a daily basis (thanks Mom and Dad!!) Some of 4A's extended family and friends even understand her autism and aren't afraid of or confused by it.

Team 4A also consists of three great neurotypical kids who have the wonderful gift of having autism in their lives. They love anyway, they go without sometimes and don't complain about it, they continue on their NT paths notwithstanding all they wrangle. Autism doesn't confuse or bother them; it is simply part of their lives, a part that is growing them into really amazing people. Team 4A also consists of two parents who love each other and work together and support each other, even when it's not fun or easy to do so.

Mostly, Team 4A has at its helm a fearless leader who understands 4A, GIRLS on the spectrum, and Asperger's. Gets every part of it, understands how the parts fit together, lends support and instruction and encouragement when it's needed, and isn't afraid to throw his weight behind 4A's case manager. For this reason primarily, 4A is a child whose life is enhanced by her autism and not limited or defined by it.

At its core, Team 4A is 4A. She's a great kid. Uproariously funny (even when she doesn't know it). Uncannily smart. Extremely gifted at drawing. While progress toward mastering NT skills can be slow and not linear, she has really wonderful moments of social connection. She is working hard to figure out who she is but also how she wants to fit (or not) into the neurotypical world. I think I'm most amazed by this. I certainly wasn't capable of such things as a near 9 y/o. She knows who she is, and she's learning how to be right with that in a world that doesn't really get her. That, my friends, is way cool to witness.

Blessed, indeed, am I by autism.

Thursday, February 9, 2012

Where's 4A?

I've been wondering lately what 4A will think of this blog when she's old enough to read it.

I recently rated Julie Clark's wonderful book, Asperger's in Pink. I really related to that book in so many ways. Our diagnostic and treatment paths for our girls are different, but our girls are very similar in many ways, in the fundamental Aspie ways of neurological wiring. Oh sure, the particulars of the behaviors or special interests or symptoms differ at times, but at the core, we both have Aspie girls who are wired different neurologically. How I wish I had this book as I began our journey into autism! But, reading it many years after the fact, as I did, still gave me a lot of healing and perspective and community.

In any event, a woman with Asperger's herself rated the book, and her comment really, really struck a nerve for me. This woman was greatly disappointed with the book because it described the Aspie girl as, basically, a pain in her parents' ass. I froze when I read this.

While I have known from early on that Aspies and their parents often don't wish for a cure to the different neurological wiring and instead crave increased conceptions of neurological diversity (and we fit into this camp), I have always wondered how 4A will feel about my understanding of and advocacy for her autism.

I am very, very clear that we consider her to be "normal," but since I am neurotypical and I write to an audience of parents, I wonder if she'll feel slighted or "talked about." I think this is how the Aspie woman who commented on Julie's book felt. Julie writes, as a NT parent, about having an Aspie girl. I could relate to Julie as a parent, and I felt she was loving and understanding of her daughter's wiring. But, I'm not an Aspie, so I don't know what it feels like to be an Aspie who has an NT parent.

Because I am neurotypical, I know how neurotypicals' minds work. When NTs are afraid, humor and compassion and kindness mitigate fear. I was once very afraid of autism, my child, and all that lay ahead for our family. My goal with this blog is to un-afraid parents so that they are able to help their kids. As such, I use humor and compassion and kindness to mitigate their fear.

Because NTs find it so hard to relate to Aspies, a comparison or a description of an Aspie in NT terms (read different, not normal, opposite, odd, or weird) bridges the gap from fear to understanding. If I describe it in terms that NTs understand (autism wiring as different from their own) and then explain the ASD wiring with a bit of humor, the NT can see the difference between the two and, hopefully, get the point.

What I fear is that 4A will take this to mean that I feel that she is odd or weird or different. That is categorically untrue.

It is true, instead, that I perceive many others to find her wiring to be odd or weird or different or not-intuitive. My goal is to have more folks see her wiring as normal or natural or understandable or everyday.

Now, please hear what I did not say. I did not say that I need people to understand her. I don't (although it'd be nice if her teachers and her friends and her family did).

It does hurt me, of course, when the people in her life don't understand her or her wiring because I am this lovely creature's mother. Not in a personal or affronted way but in a "why couldn't it be easier or different" way. The misunderstanding that the larger NT world outside of her life has of her and her wiring is truly none of my concern. I'm not apathetic; please don't misunderstand. But, this larger misunderstanding doesn't make me worry or fret or feel scared. It makes me sad. It makes me want to advocate and educate, but I am very realistically clear that many people won't change their minds. That's okay, of course. But, I will die trying. Not for her, mind you. For me. I need and want to do this as her mother. Just as I advocate for all the things that all of my children love, I advocate for her and about her because I love her. The stakes for her are just higher.

All the advocating and educating that I may be able to do (or not) really won't amount to a hill of beans for her. (a) Because it may not reach enough folks. But, more importantly and more likely and more accurately because (b) she may not want to be advocated for because she perceives her wiring as normal or everyday or (likely) better.

I have heard people (mostly those who don't know better but even some who should know better, and the latter category kills me) describe my beloved 4A as rude, inflexible, spoiled, and possessing personality problems.

Asperger's is not a personality problem. Aspies, including 4A, do have neurological wiring that makes their minds work in a way that is different than the NT one. It's not a "personality." It's a neurological difference or distinction in that it has a biological basis. It's not a problem. People don't understand it and that causes problems, but the different wiring, in and of itself, is not a problem.

4A is not (always) rude. Because of her neurological wiring, she perceives her thoughts as truth and assumes that everyone else shares her thoughts. Because of her neurological wiring, she doesn't take other's perspectives or even (sometimes) comprehend that they exist. That is not rudeness. That is different wiring.

4A is not inflexible. Because of her neurological wiring, she doesn't perceive or comprehend that others around her may want different things, have different thoughts or perspectives. To say she's inflexible assumes that she knows that she's trying to "get her way." It actually has nothing to do with that. She, because of her wiring, doesn't know (sometimes) that other ways exist. And, because of her wiring, her world is literal with nothing hidden or unexplained or grey. If you want something from her, you need to learn that language in order to get it from her. Please don't expect her to give it to you or do it for you if you aren't speaking her neurological language.

4A is not spoiled. This is explained identically to "inflexibility," except that I would add that "spoiled-ness" might exist if we allowed her wiring to excuse her behavior. For us, it explains her behavior, but it does not buy her a free pass. Instead, she must learn the social skills that the neurotypical world she lives in requires, like flexibility, perspective taking, and politeness. Learning these skills will be harder for her because of her wiring. They don't come organically or naturally to her. That's okay, of course, but she needs to learn them anyway. It becomes our job, then, not to let it slide but to help her learn skills that are not intuitive to her wiring.

Now, when she's a grown-up, she may (appropriately so) reject the use of these tools that we're teaching her. But, for now, her job or role or place in this world as a child is to go to school (or be educated). School/education is all about (1) learning and (2) following rules. Her secondary job in this world as a child is to have friends and fun. Friends and fun are all about (3) perspective taking and (4) flexibility and (5) commonality and (6) politeness and (7) empathy. All of these skills that I have just mentioned, (1)-(7) inclusive, elude her (at times or to varying degrees) because of her neurological wiring. Knowing that she may categorically reject these skills later in life in preferring to live her life without them to be true to her wiring, am I now, as her mother while she is a young child, to not help her master or mimic these skills? For me, the answer is a resounding no. Actually, more of a really loud, confident "HELL NO!!!"

I am not asking her to change. I don't think she needs to. I think her wiring is divinely perfect. I do think, as her mother, that she does need to learn to master or mimic these skills, even if they are not organic in her and even if she doesn't want to and even if it is hard for her (and me), because she has to live in this world now. Girl Aspies are profoundly prone to depression in their adolescent years. Knowing that is a very real possibility down the pike, I would prefer to spend our time now giving her skills and tools that may help her keep that possibility at bay or at least lessen its likelihood. I can't avoid it for her. In fact, she can't even avoid it herself. Depression, like autism, is biological. That being said, all of the preparation in the world can't avoid biology. But, I intend to give her a fighting chance. Not at being popular or having friends (absolutely not the former, at least), but at knowing who she is and how to relate to people so that she doesn't feel lonely if she, in fact, doesn't feel like being alone.

When she looks back on all of this work that we do for and with her, I don't know if she'll be able to see that. It doesn't matter, of course. As all parents do, I make choices that I believe to be in the best interest of who she is and who she can become and what she needs. But, I do wonder if she'll feel like I thought that she needed to change because who she was wasn't acceptable.

I hope I can impress upon her that who she is is absolutely acceptable to her, to us, to God. I pray that who she is will also be acceptable to those she chooses to share her life with, in friendship or work or interests or love. That's the very, very best I can do.

Monday, February 6, 2012

"-Ing"ing

As in treading, hanging, straddling, forging, managing, nearing, losing....those kind of "ing"s.

I am treading water, trying to keep my head above it and survive. I feel somewhat in the depths of motherhood hell right now. 4D is 20 month old. If that doesn't explain it for you because you don't have one or can't remember specifically what one was like, I can give you some more "-ing" words. Hers: WhinING. NeedING. WantING. YellING. TantrummING. CryING. RepeatING. TalkING. Mine: DistractING. MonitorING. CleanING. FeedING. HoldING. IgnorING. TryING.

Holy mother of God.

WTF?

Honestly? Honestly! I have FOUR children. How is it that I forget every single solitary time how miserable this stage is?!?! Oh yes, it's cute and cuddly and "easy" (in the parenting sense of the term). And, oh yes, it goes by so quickly (thank GOD but not fast enough). OH MY LORD! I am wondering if I will, in fact, survive this fourth bout. And, to say that it's demanding or needy or "hard" or trying is really, truly a fucking joke after surviving the autism version of it. But, still. Hence, the "hanging."

As in, hanging by a mere thread. My nerves are raw. That constant whining and crying and needing and wanting from 4D has depleted my stores (of nerves, sanity, sleep, peace, and calm). That puts me on edge. On edge is never good for 4A. Surprisingly, my on-edginess isn't really tripping her up this time. It is, however, making 4C insane. She still needs me, too, and I'm so depleted by 4D right now that I don't have a whole lot left over for 4C. She's such an enthusiastic and exuberant and excited and good-natured kid. It about kills her when I bite her head off for merely saying my name. Mind you, she's probably saying my name because she wants to tell me something sweet or share something with me or maybe tell me how much she loves me. No matter. I bite at her like a Venus fly trap. I am so NASTY! Sigh.

She and 4B are resilient, and they can take it. But, should they have to? Addressing this question is, of course, an exercise in absolute futility, but deranged as I am by all of this needing and whining, I'm falling into that horrible pit of mother guilt, which is never necessary or productive.

4Daddy and my mom are helping. They really are. They are shuttling and answering and feeding and wrangling and refereeing. As often and as best they can. Thank goodness for that! That makes the foregoing "-ing"ing survivable.

Underlying all of the foregoing "-ing"ing is the managing. Always the constant managing that comes with life on the spectrum. Managing the team to keep them all in communication. Gathering the input the team leader and I need to decide what to do. Disseminating that information to the providers. Following up to see if it's working. Reinforcing with pebbles and social stories and scaffolding. Researching the next big hurdle (puberty conversations with a girl Aspie sound SO fun, don't they?).

This brings me to the forgING. If you have a girl on the spectrum and you haven't yet read Julie Clark's book, Asperger's in Pink, you absolutely must. She describes being the mom of a girl Aspie as not even having a gravel path to follow, let alone a road. So little is know about girl Aspies, and in many ways, they require different management and treatment of symptoms than boy Aspies. While I am so very VERY lucky to have Dr. Steve and the amazing intuition about my Aspie that he has taught me to have, I am still doing all the forgING in terms of the work. The resources to do the scaffolding and work that needs to be done are not available because they haven't yet been created. I am making them myself. Time consuming and exhausting, two more "-ing" words for you. This brings me to "straddling."

As in, straddling two different worlds. I am neurotypical. 3 of my four children and my husband are neurotypical. My children's teachers are neurotypical. I understand the NT world because I am part of it. I live in it. Most of my family lives in it. It is how I know that the world works.

My eldest child is not neurotypical. By the grace of God and the amazing Dr. Steve, I understand her world, too. I understand it so well, apparently, that he thinks that I don't need him anymore (don't worry! I told him that I'll stalk him if he ever tries to leave us! He took that well!). I constantly and always am flexing between two worlds: the NT one and the ASD one. I am SO lucky to have that privilege and knowledge and capability. Sometimes, I just wish it were a little easier or a little less or a little blurrier, the line between those two worlds. That brings me to "nearing" and "losing."

As in, I am nearing my breaking point and almost losing my mind. I am tired. Physically but really more emotionally. I don't want to have to explain to another person what 4A needs or why she does or who she is. I want people to get it and be intuitive about it already, damn it! I don't want to forge this path. I don't want to tell people what they need to do. I want them to know and do it without my asking or telling. I don't want people to ask questions about her and who and why she is. I want them to know already. I'm tired.

I remember a time when 4A was about 3 when I felt this exact way. So worn out. So very tired of all of the work that it took to keep her present in her life and undisruptive to ours. It about did me in. Very literally.

It's different this time. In that I have a LOT more support and knowledge and peace than I did back then. I can do this. I will do this. Of course. I just don't want to today. That's all.

And, you know what I say about "don't want to," right? Life is all about ALL ABOUT shit you don't want to do. The more important question, of course, is what am I going to do about it? I know, and I'm doing it, but I'm going to have to explain it to you later.

You'll excuse me for now, please. I haven't had a shower in two days, my son has his FOURTH bout of strep in 10 weeks and could use some mommy/couch cuddle time, I have a dishwasher full of clean dishes and sink full of dirty, I need to figure out what the hell to feed these people again, I need to ready the flashcards and pebbles and timer for 4A's exodus from school, and I want to sit on my ass for 5 minutes with a cup of tea before 4D wakes up and starts hollering at me again. And, with that, I bid you good day.

Friday, February 3, 2012

"Journey to DX" series: part 5, "the holy grail"

What is going on with my kid? Why does she act like that? What's wrong? Is it my fault? Will she ever go to school? How do I help her?

Many times, a parent who has a child with differences asks some of all of these questions (and more). While that awful "label" business lurks in the background (and I've told you before why that "label" business is so damaging to an ASD child), these parents just want to know. Actually, they need to know.

For many of these parents, a diagnosis explains things. A diagnosis lets the parent know that she's not crazy, it's not her fault, her kid needs help, and she's going to now be able to secure this help (more on this in an upcoming post about IEPs and 504s). A diagnosis lets her shut strangers and family up about her part in her child's behavior. But, I want you to know, if you're just starting your journey, the reality about this "DX is the answer" problem.

For me specifically, I needed to know, for myself, that I hadn't caused 4A's behavior, that I wasn't to blame. I also needed to know how to get it to stop. I vaguely remember having concerns about school and friends and fitting in, but she was only 2 years old at the time. So, my real needs were "please tell me that I didn't cause this" and "please make her stop." Crude, perhaps, but true, nonetheless (and, if you remember, I have vowed to always tell you the truth, even when it ain't pretty).

You may have other concerns, but my suspicion, because I've been there and read a LOT and talked to a LOT of people about this issue, is that you want to know "what it is." You want to know what to call what's going on with your kid. When people ask questions about your child, you want to have a name to call it. You want to shorten that explanatory conversation that you've had a million times by now. You want to be able to throw out one word. Been there. I understand. I know. My heart hurts with yours. Consider yourself virtually hugged.

Diagnoses are helpful. Remember, a diagnosis is what allows supports at school, IEPs and 504s. But, I'm going to tell you something now that may burst your bubble but that I desperately wish someone would have told me. A diagnosis accomplishes very, very little.

Yes, it does salve your hurting heart and soul and confirm that you aren't crazy. That is worth its weight in gold, of course. But, what it does for your child is really not all that much.

I have tried to tell you gently before, and I will try again (perhaps less gently but still with love and compassion) to tell you now, that no one person, no one diagnosis, no one treatment will solve anything. YOU are the only one who can do anything about this. You are your child's advocate. You are your child's case manager.

A diagnosis may, in fact, narrow the range of supports and information at which you should direct your attention. But, a diagnosis does not make your child stop. It actually doesn't help your child do anything. All a diagnosis does is let you sleep at night.

That is not to be trivialized because I have been where you are. But, what I wish I had known was that a diagnosis wasn't the magic pill or secret or thing that got 4A to stop; her condition is neurological; as such, it's continually on-going and ever-present; it never will "stop" in the way that I had wanted or dreamed about back then (although I know now that my thinking back then was really, really flawed).

4A's diagnosis really just confirmed everything that we had already been doing. I remember asking the developmental ped what her Asperger's diagnosis (at age 5 and again age 6) meant that we needed to do. Meaning that I said, "Ok. She has Asperger's (which we suspected and Dr. Steve and Dr. G KNEW). Goody! What does that mean we get to do or try now?" Developmental ped's answer? "Nothing. You're already doing it." Meaning that all of the therapies and interventions and supports and tricks-of-the-trade to manage her symptoms and improve her outcome were already in place (and, for her, had been in place for years).

Now, this makes me realize or admit three things. One, not all families are as lucky as we were. Not all families are able to or capable of or supported enough to start as early as we did. Second, perhaps the doc who diagnoses your child will have another thing or treatment or med to try for your child once the diagnosis is established. Third, not all families are lucky enough to find a Dr. Steve who can teach them how to get inside their child's head to see the world from her perspective and to, consequently, become intuitive where her needs are concerned. I can only share our experience. Please remember that yours will look different.

But, what I hope this helps explain is that while you're waiting for that diagnosis, please don't be seduced into thinking that that word or words will do or solve anything. You should be treating and trying now, while you're waiting. Waiting for a diagnosis to try to figure out how to treat or medicate or help or support is actually quite backwards. You didn't cause this, but you get to fix it. You need to start trying to fix it whether or not you know what "it" is yet. As for what to try, I recommend talking to other parents who have kids like yours. Even if your child doesn't have a diagnosis yet, you can still attend Autism Society of America meetings to get information and find resources (they won't judge you or be mad at you, I promise; they'll want to HELP you). You can still read and ask questions of experienced professionals and research.

As for how to find the "right" docs to help you, you'll have to stay tuned.