A quiet moment

I had to wait for some downtime to write this. It is silly really since we've already shouted to the world via FB that our little girl is finally here. Oh well. For some reason I only ever head over here to write something about Asher or Autism related. But this started as a family blog, so it only feels right to include Lola.

Lola Aisling Cole was born on May 15th at 10:21 in the morning via scheduled C-section. She was 7lbs 10oz and 20inches long. She came into the world making odd animalish sounding noises that were super adorable, with a head full of almost black hair, and looking just like her daddy.

When Asher was born and they handed him to me, I was in a fog. Of course I loved him immediately, but I wasn't in love with him. That feeling of just instant adoration and intense baby love didn't wash over me right away. I loved him, I was happy, but it wasn't what people told me it would be.

With Lola however things went a little differently. First off, I didn't get to hold her because...well...C-section. I had to watch Phill hold and snuggle her while I violently shook on the table. But what I could see of her was amazing adorable. And I was a little jealous.

In recovery when I got my first snuggle and real good look at her, I was immediately bonded to her. I was full of giddy baby love, didn't want to give her over for anyone to hold. My daughter, My Lola. It was surreal in a way because after we lost Elisabeth, had such a difficult time conceiving and delivering Asher, and multiple miscarriages afterward, well it felt like I'd never have a daughter. I had lost my daughter and now had a son. But she is here and she is gorgeous and she in mine.

Sometimes I look at her and listen to her baby sounds....which are definitely more feminine than Asher's were, and I wonder if this is how Elisabeth might have been if life had been different. Would Phill have held her the way he holds Lola? Which is different somehow than he held Asher. He is smitten.

And speaking of smitten? Asher Ben. He loves her. We were really worried that Asher would resent her. But instead all day long he tells us how much he loves her, how cute she is, and how sad it makes him when she cries. Having a sibling has already been good for him. When she cries he tries to comfort her, he pats her head, rubs her belly, and tries to give her pacifier back. Sometimes if she isn't in her swing or bouncer and one of us isn't holding her, he will frantically search the house for her. He comes back crying and saying "Lola is missing" Poor kid, she is just in her bed napping. And then he gets mad at me and tells me Lola needs to be where he can see her. Those moments are great for getting him to understand how scared we get when we can't see him or know where he is.

When Asher came into our lives, he came in with a loud crash. My whole life changed and it all revolved around this very sick and demanding baby. Asher was all consuming. Lola came in quietly. She has just sort of become a fixture in our home, almost like she was always here. Nothing much has drastically changed...well except my sleep pattern.

And here we are. Six weeks today. How did that happen? I mean wasn't she just born, but always here at the same time? Six weeks. I've already put away newborn clothes and sold off her newborn cloth diapers. It is way more bittersweet this time. Every time something ends I hear a soft whisper in the back of my mind and heart saying "Last baby" My last baby. God I'm desperate to enjoy every last second of her. This is the last time I'll get to have these "firsts" and if I blink or get preoccupied with life, I might miss something. And I don't want to miss any of it.

There really is so much more yet nothing really left to say. She is here. She is beautiful. And the Family Cole Slaw, is finally complete. When I look at my kids together it is so hard to remember back to the time when we thought we'd never have a baby of our own. And look at us now. Life is funny that way.

Everyone is a Critic

I've put off writing this entry for a while. Mostly I wanted to wait for a week where I wasn't judged by another parent, professional, or stranger. It was over two months ago that I made that decision. Two months. Sad right? It’s been over two months since I've had a judged free week.

One of the things you learn early in parenting, is that somehow just being pregnant makes you public property in some manner. People feel they have rights to opinions about you, be it your appearance, the decisions you are making for your baby, and what you should be doing if you're not already doing it...differently, more, not at all...you name it.

Everyone is a damn critic.

This doesn't go away when you have a special needs child. In fact it gets worse. The sad thing is that it isn't always meant with malic, I think in most cases people's intentions are good. I'm not sure what that says about our society, maybe a topic for another post down the line. People judge and they do it without knowing they are doing it. And TRUST. I know I am not immune to this. I am a flawed person, maybe more flawed than the next.

But being on the receiving end of it so consistently has given me some awesome fodder for reflection. So here are my thoughts

I split my life into my critics. There are several groups. Let us dissect them.

I have some wonderful friends. I split these friends further into my "IRL" in real life friends and my "e" friends, the wonderful people I've met in mommy forums, special needs support groups, and so on. I could further dissect these groups, but for conversation sake, let us just keep it simple.

IRL I have friends who look at Asher and say "I don't see it, I just don't. I believe that you think he is Autistic, but I don't see it" or "He isn't that bad, he looks like a regular 4 year old to me" or even better "Every kid has bad days" Except you just witnessed a good day for him. While these comments are meant to be supportive and kind, they aren't helpful at all. They just make me feel more defeated. I need my friends to understand how hard this life with this little boy can be sometimes, shoulders to lean on. I can't lean on them if they don't believe me, they won't support me if they think I'm exaggerating a very real and sad problem that takes over my whole life.

Sometimes I feel like I have nothing to talk about with these friends, when they used to know everything about me. Partially because I don't think they want to know this part of me and partially because while they don't know it, the look on their face when you talk about things like OT, Speech, and ABA is riddled with judgment. Like really "Why can't you just let him be a kid” Awesome.

I have a very small handful of e-friends that get it. These ladies know who they are. I love you guys, I do and I love our group. But the rest of my e-"friends" and I use that term loosely to describe a relationship with a group of women that have been together online since we were pregnant with our first borns, some of those friends have been downright hurtful with their judgments. At times it is hard to remember why belonging to this group ever seemed important. Oh because once upon a time we all just had kids who were the same age, they weren't differentiated by NT (Neuro Typical) and SN (Special Needs) I feel like most times I have nothing to share with these women either. While they debate things like Disney's new SN policies and see no harm in it, myself and the other "handful" of SN mamas are lurking in the back ground drowning in unfair judgment and choking on the opinions of others. And they don't get it. No one sees how these "little debates" can be so isolating and marginalizing.

Once way back in the dark days when I first got Asher's diagnosis, I had one of them call me out and say that they didn't believe Asher was autistic. Why the hell on God's green planet would anyone ever lie about something like that? You don't get cool kids points for having a disabled child. What a dark time for me. I was so upset by this women I would never meet and should have no care in the world toward her opinion, so upset that I actually scanned in my son's diagnostic medical documents and posted them online. So low of me. I don't know how or why I was in a place that someone's judgment could get me to such a place. It was almost pathetic.

But I have other critics and these critics have the ability to hurt me and my son a lot more. These are the critics that have too much pride to admit one of their own could be broken or imperfect in some manner. Yes family. I just want to say that I have some wonderful family members who are nothing but supportive. But there are others who look at us and say things like "there is nothing wrong with him, grow a back bone" "why does there have to be something wrong with him, why can't you just enjoy him" "why did you have children if you were going to let some quack place a label on him” or my very very favorite "I believe that you think he is Autistic” Sigh. Also not helpful. Not for Phill and I and certainly not for Asher. We have one person in particular who flops back and forth and by that I mean we are damned if we do damned if we don't. She will say things like "There is nothing wrong with him, you're just not parenting with a firm hand, he is a brat” and then ten minutes later when Asher is having a sensory meltdown and Phill is holding him in the other room to give him sensory feedback, will look at us and say "That is terrible, he is just a child” She who shall never be named is so lucky I hold my tongue more than I let it fly free.

So I spend half my time hearing about how people don't understand it or see it and then I spend the rest of my time being judged by the people who do. I'm either doing too much for my son or not enough. Let me explain.

So my friends think Asher is milder than he is, they don't see the things that worry us and think we are crazy for the amount of therapy we seek out for him. I'll include well intentioned family members in that group. Then there are the therapists. The people who do see it. But suddenly when talking to them 30 hours a week of OT, Speech, ABA, Hippotherapy, Social Group....it just isn't enough and why aren't we doing more?!? What do you mean you want some time for him to be a kid?!? OMG he has time to be a kid when he is out of this most important developmental stage. Have you considered medication for your child? NO? You're too biomedical? Have you considered fecal transplants? NO?!? You're not biomedical enough! You suck! You're choosing wrong!

I love even more sitting in school meetings where I try to explain what my son is actually capable of and I am told that he is so much more severe that I think he is. Wait a minute, back up....everyone in my life tells me I'm seeing things, he is fine, nothing wrong with him. And you, you sit here and tell me that my son is so severe he can never be in a regular classroom with normal kids, not just for his own sake, but for the sake of other children as well. He is so impaired he can't be taught to sit in a circle for morning meeting when a fucking dog can be trained to sit just because you tell it to? You're telling me that no matter how I try to advocate for my son, I'm wrong.

So many critics. As part of my non mommy self, I take on clients for advocacy. I actually sat in on a meeting where the school district in the span of five minutes told a mother that she should get her child involved in more activities and that she wasn't doing enough, but then just minutes later told the same mother regarding the same child "Shame on you for forcing her to do activities that cause her anxiety” For Suck Sake people. You'd think this mother was Hitler for signing her daughter up for dance lessons (Which said child loves btw) Why? Why would they do that? Because in once sentence in benefitted them to say mom wasn't doing enough and then in another it benefitted them to say she was doing too much.

So I say fuck it. Seriously. Fuck it. There are too many critics and everyone is on the extreme left or right. How about joining the real world here, that just happens to be somewhere in the middle? Is my son typical? No. I'm sorry friends I know you love me, but your denial hurts me. Is my son so disabled he can't be around normal kids? NO. I'm sorry well intentioned teachers who really do have Asher's best interest at heart, you wanting to protect him from the world and holding him to no standards, hurts him, it hurts me, and it hurts our family.

So I'm saying NO. You're all wrong. Society is wrong, the professionals are wrong, even those who love us are wrong. I'm so sick of listening to people talk about my son and seriously sitting there trying to figure out who the hell they are talking about. Surely not the skinny tall dirty blond four year old with huge blue, green, brown eyes that I tuck in every night. Not the same little boy that I put in time out forty times a day, redirect on the playground, snuggle and watch movies with, laugh with, cry with, be silly with, cry over when he is sleeping and can't see me. We're not talking about the same little boy, none of us. And we're not talking about the same me either. I'm not over exaggerating my son, I'm not under exaggerating him. I'm not putting him through too much therapy or not enough therapy. In truth our normal is just different than yours. You want a say in that? Too bad. I don't care for your say, unless it is 100% supportive and loving and transparent, unless it is absolutely free of your judgment. And it rarely is. Rarely.

Value

We are taught growing up that certain things hold value. I'm not talking about monetary value, although I'm sure that could apply, but milestones, achievements, goals, things that make up your value. I grew up differently than most people. I grew up away from my own family, but for the most part an outsider to the families that I did grow up with. Growing up in foster care is complicated. It may seem simple enough to the outsider, oh okay you didn't grow up with your family, but it isn't that simple. It means that forever your values, outlooks, spiritual beliefs, traditions you chose to pass along, those are hodge podged, things you've collected along the way, a little from this family and a little from that. People look at you and say, "oh you're Jewish, no wait, you're Christian" Myself I like to think I strive to be a good person and those titles don't matter. But they come up over and over again.

So value, I mean the value that floats between tangible and non tangible. For me this meant college. I didn't grow up in a family that said "You need to go to college" quite the opposite actually. I grew up amongst people that didn't hold those high expectations for me. I'm not pointing fingers, just the families I've lived with didn't even hold those expectations for themselves. But this attitude fostered in me a drive to find meaning in my education. It was very very important to me. During very difficult years that included 7 different high schools, I forced myself to pull it together and earn good grades. It wasn't easy. It wasn't at all. High school in many ways will always be my greatest achievement. And that is sad. Super sad. But college was the goal and I told myself that this was a very important part of myself. I went to college, I had a degree. And that degree lead to another degree. And I became the first person in any of my families to earn a Master's Degree. But it wasn't just any Master's Degree, it was a specialist's degree....and that held immeasurable value to me. I told myself, this is who you are and no one expected that of you, no one thought you could, not in a million years. And then at 26 I was accepted into a doctoral program, and that held an unreal amount of value to me.

Only life takes you on different turns. Instead of a Ph.d I chose to raise a teenager, something that held a different kind of value...in many ways a much more important value. After all, this child was so much like me, who I had been, and I thought that if I did everything right, gave her all the advantages I had, taught her how to use certain tools, well I could help her find the "value" I had discovered. I used to be so stupid. I was the smartest stupid person I'd ever met. So book smart, so street smart, but so interpersonally stupid. In trying to make better for this little girl, I was really trying to save the little girl I had been, which is also incredibly sad. And in the end, after all that effort, I'm not quite sure it helped either one of us.

But slowly my ideas on value began to change, I didn't dismiss my education, it was still an important part of who I was. I looked in the mirror and I saw a very intelligent woman, someone whose skill was extremely valuable in her field. I saw someone who could teach the unteachable to read, someone who had something to offer. It made me feel valuable. The sad part is that I never felt valuable just by virtue of being me. No one had ever told me that I was.

So life moves on and I look in the mirror and now I see myself as someone's wife, Phill's wife. I am a good educator, a loving wife, a great friend and sister, and now I'm an aunt. And that is who I am. And I feel good about that value. And then I am pregnant, I'm almost a mother, but not yet. But my identity is changing slowly. Still I held onto the importance of being Holly Cole, a reading specialist, a special educator, a damn smart person. After all, many are blessed with charmed childhood's, those gifts that I have never experienced. For all the bad I'd been given, I have never once taken for granted that I was given the gift of above average intelligence. It was so important to me. My brain was my value.

So Asher came along. I expected to look in the mirror and see my value grow. I would see Holly Cole, a loving mother, a wife, a great friend, the world's best auntie, a smart woman who indulged in brain research for fun, a prolific reader, and a progressive teacher. In reality I saw a struggling mother of an infant who was very ill. I was too tired to be a good wife, I became an unattentive friend, sister, aunt, I couldn't work, I was no longer an educator. And that brain research? No, it was replaced with immuno disorder research. And Asher became the only thing of real value in my life, and he was broken. I know people see me in a better light than this and I'm sorry to burst bubbles, but the truth is...I was incredibly depressed. I had no idea who I was anymore. And nothing was about me, I lost myself. I became the least important person in my life, the last person I considered, and everyone suffered for it. I lost my value.

Slowly life with Asher became easier. We learned how to manage PID, we learned how to cook for many many food allergies, we figured out the medical food game and there was more time to be a friend, mother, wife, aunt. I remember emerging from the fog and looking at my nephew and realizing, I didn't really know him that well, for all his six months on earth, I wasn't that close to him, not the way I wanted to be, not the way I was to his sister. I had been unavailable for too long. I went back to work, I felt good teaching kids to read, I started up my brain research again, I debated with coworkers the merits of research based phonics instruction over whole language methods. I felt smart again. And yippee...I brought money into my household...what a concept. I looked in the mirror and I saw these things. And I felt valuable again. It was nice....while it lasted.

Somewhere between 16-18 months for Asher, that picture started to become distorted again. Starting with the day I walked into a room and my son didn't look up. I kneeled behind him and screamed his name, he didn't startle, he didn't move. I banged pots and pans, nothing. Oh dear god everything went blurry...the picture started to acid peel away, it fizzled as it went, taking my sense of me with it. Then we dove into unknown territory. I looked in the mirror and all I saw was Holly Cole Autism Mama. Everything else that I had deemed so valuable and important was gone. I became again, the least important person in my life. My real value lying in what I could do for my son.

I couldn't work, which means we lost my income and suffered financially. Someday I'll write a blog about that, because it is unreal what having a child like Asher does to your financial security. I no longer had the means to pay on my student loans, loans that had paid for my precious education. I couldn't work, not if I wanted to get Asher the services he needs, keep him in the school program he needs, make the most of this most important developmental time period. And I'm not a martyr, I'm not an amazing mom, I don't have super strength, anyone one of you reading this would do the same thing. You'd do it. You just don't know it yet. I hope you never need to know.

And that is where we are. Only I look in the mirror now and I see Holly Cole, Asher's Mom, Autism Mom, Phill's wife, Lola's Mom. Now I think a lot more about my value, I'm reassessing. I can't stand before you and say that being a mom makes me super valuable, that is a smack in the face to every woman who longs to be a mother and can't. I can't say that an not take our sex back several generations. I won't stand before you and say my children are the best gift I can give to the world, little heroes just by existing, the bright lights that give my life any and all meaning it needs. Much like growing up in foster care, it isn't that simple. I love my son and I will love my daughter, I already do. But I love myself, I have to in order to be a good friend, a good wife, a good person, those things I also find quite valuable.

And I don't have answers. But I know that many of those who read my blog are special needs mamas and I know from conversations that we are all struggling with our value. It is a concept that is evolving slowly for all of us. And maybe my value on this Earth will never be tangible, maybe it doesn't need to be. And maybe my only real job is to not lose myself. I guess I just haven't figured out how to do that yet.

The Heart of the Matter

I remember sitting on a therapists couch several years ago and being told that when I speak I need to get to the main idea quicker. Too much of what I say has meaning, like every single word. Most people have a hard time processing that much information. My homework? Get to the heart of the matter. This is something I've been working on, but as you know...I'm wordy.

With Asher there has been so much information thrown at us, so much to update and tell. It has been hard getting down to the main idea. I'm not even sure what it would be. Describe Asher's issues in three sentences? That would take me longer to write than a paper. Seriously. I'm not sure which facts are more important than others, what is something to leave out, gloss over, not mention at all.

With our new baby, it has been more of the same. I haven't been sure what people would care to know, need to know, so I haven't really shared anything. But it might be time. And forgive me if I leave out information because I am going to try to keep to key facts.

So for the first time even, let me share that this pregnancy started out as a twin pregnancy. I'm sorry I know I haven't really shared that. Early on one of the babies stopped developing and instead of vanishing or being reabsorbed, the "debris" hung around and became almost like tumors hanging around in the viable baby's sac. Pregnancies like this one have less than a 50% chance of making it passed the first trimester. But we did. The "debris" is slowly being reabsorbed over time, but there is a chance that when baby girl is born, she may have some extra baggage. Nothing that we can see so far on ultrasound though.

We shared when we found out the gender that we are having a little girl! What we didn't share is that we had to go back three times for our anatomy scan. At first we were told that they just couldn't see her face, that she was being stubborn and we couldn't get her in the correct position. The next week we were told that they saw something. Key fact: Our baby has a heart defect.

There are a lot more details and things that feel so important, but I'll leave it at that. We've had worry of course, but we've learned with Asher to remain calm and balanced and roll with things. After all there isn't much we can do. We've got this no matter what. We'll do what we have to.

Yesterday I met with specialists, had a follow up ultrasound and fetal echocardiogram. And while the news isn't perfect, it is still good. They can still see the heart defect, but somehow in the three weeks since they last looked....50% improvement! Not perfect, because perfect would mean no heart surgery ever, but still good news. Baby girl will not need surgery the day she is born, like we'd been told might happen. She may even be able to avoid it in the first year. And that would be even better news.

So why share now since things are good? I didn't want to share our doom and gloom...we don't want to be that family. Of course people will want to know after the baby is born why she is fragile, prone to illness, why we say "Please use some of our hand sanitizer if you want to hold the baby" lol. I don't want to explain myself later. But mostly I wanted to tell everyone that I finally figured out the heart of the matter, I had some help while hashing it out and getting feedback, but the heart of all of our matters, every trial and tribulation, every problem that we choose not to get us and meet head on, the heart of all those matters is that our life while not perfect, is still pretty good. Just like Lola's heart.

Oh and baby girl has a name: Lola Aisling. That is your reward for reading a non sappy, to the point, nothing too interesting post.

Breaking News

First things first, are you pregnant? Do you plan to become pregnant? Wait! Stop! Don't breathe! This just in, breathing during pregnancy causes Autism. This is based on zero fact and completely meant to instill fear and perpetuate ignorance and misinformation. You're welcome. Remember folks you heard it from me first.

Okay seriously, I'm sick and tired. I'm tired of hearing that x,y,z causes autism and new "evidence" shows a link to x,y,z....based on zero actual fact. So here is the translation: You did something to cause your child's autism and if you're pregnant and eat at all, don't live in a bubble, well then your kid is going to get the autism too and it will be all your friggan fault....take the mommy shame with a side of guilt and future remorse. Bam.

Today I was in my OB's office and I happened to have Asher with me (Fuck you professional development day right after a holiday) His behavior was....special. You know aside from the fact that he is autistic, he is also three and a half and waiting is not his forte. Anyway, a very pregnant young woman next to me decided that my hands weren't full enough and that what I needed was for her to chat my ears away while my OB ran 45 minutes behind.

I learned that this woman is expecting her first baby, she is not getting the flu shot or doing the glucose screening, because you know...she doesn't want to increase her chances of having a baby with autism, she even refused all ultrasounds... too risky. But I'm not judging, because well to each their own. I mean I inwardly laughed at the sugar glucola drink to screen for diabetes because well lol..but whatever.

But halfway through her non stop chatter she stops and says "You have your hands full there" Yeah what gave that away? The fact that you're practically talking to yourself while I chase my son and wrestle him before he runs out of the room? Or maybe she breathed long enough to realize that my child is screaming "stop talkin at me!" In any event, she surveyed the scene in front of her and said "I'm not an expert but he is acting a little autistic if you ask me"

Okay to stay with me. Because you guys know me. I just looked at her, purposefully made her feel uncomfortable while maintaining silent eye contact and slowly said "Well that is because he IS Autistic and you're bothering him" I give her credit. She looked a little put off, but then she almost whispered "So you're having another one? I think I read somewhere that your next baby will definately be autistic too"

Don't judge me too harshly here. But I leaned in and said "speaking of risk factors based on zero study and fact, I think your child is bound to be rude....you know like mother like child" I was going to scoop up Asher and move away, but she beat me to it.

Anyway, I'm a pretty regular poster on a mommy message board. It is a general board, so the only real thing we all have in common is being pregnant at the same time. But honestly, it seems like everyday I am typing "FOR FUCK SAKE PEOPLE" because I'm constantly reading crap like "OMG did you guys know pitocin causes autism?" "I'm not getting the flu shot because I don't want a child with Autism" "Did you guys know we should be avoiding red and blue dyes"

Really everyone, just shut the fuck up. I honestly believe that anyone, anyone out there who is spurting crap about autism and does not have a child with autism...well they just need to shut up. Stop spreading fear, stop spreading misinformation, stop fucking blaming people for what is essentially a genetic toss of the neurological dice. Lucky for me, I'm a smart girl and a bit of a bitch, so I'm resilient. I'm not about to let a single person tell me that I did this to my son. But there are women with children like Asher or more severe who read this stuff and think "OMG I let them induce me, I let my son down, I should have just waited until I was 48 weeks pregnant and then he'd be fine" For me it would be more like "Fuck dude, I ate way too many chocolate donuts when I was pregnant with Asher...oooops, who knew chocolate causes autism?" For Fuck sake.

The fact is, Asher is my son, but he is also Phill's son. Our genes combined in a way that made Asher, everything that he is. The awesome, the good, the normal, the eh, and the ugly. And it is just who he is. This little boy would not have been born to anyone else exactly the way he is, regardless of the similarities in pregnancies, how many donuts were eaten, if the flu shot was had, or if mom opted for a natural delivery vs and induction. This child is my child, he is Asher, and he is special in many many ways.

Sometimes I read this crap and while I silently laugh at the stupidity of it all, another part of me panics "What will I do if my little girl is like this too? Can I handle two of them? Would I be a good mother to two high needs kids?" All mothers to be worry, but special needs mamas worry at a different level. The what ifs are bigger and the whys may never be answered. The only thing that would really help, would be people just shutting up every once and a while, thinking about what they are saying, the message they are sending, the judgements they are throwing out.

Wait wait.....don't blink, don't eat x,y,z, next thing you know you'll be telling me those things cause heart defects...oh wait we were talking about something else.

30 Days of Thankfulness Day 26 : Setbacks

Sometimes it is really hard and a little sad to look back at where we started. But I've been doing it a lot lately. Of course we started like everyone else. I delivered a little boy, a lifelong dream and thought "finally this is happiness" Asher our cute little baby, he has medical issues, but he was happy and meeting all his developmental markers. Like most new moms, I annoyingly posted about all his milestones to anyone who would listen. "Omg he is talking in 2 word sentences at 12 months!" So advanced. Sigh. He walked at 8 months, he talked early, it seems he never wanted to be a baby, always striving towards being a big kid.

He had a lovely personality, he flirted with cute waitresses and little old ladies. People stopped us in the mall to tell us how gorgeous our baby was. People wanted to hold him. Medical complications aside, we felt so...blessed. And then one day it crashed down. I remember very clearly the time frame because it started the week before my Aunt Cathy passed away. Asher and Ethan both were so sick, for a week straight they had super high fevers above 104. Antibiotics, breathing treatments...long sleepless nights and at least a handful of visits to the pedi and one or two to the ER. Naturally he was quieter, he was sick. Sometime after my aunt's funeral, I noticed he wasn't himself anymore. He had gotten better but was still quiet. Eerily quiet. And then it hit me, he was too quiet.

I remember sneaking up behind him and screaming his name as loud as I could. The panic when he didn't startle, didn't look up, didn't even notice me. I thought, we thought, everyone though that he had lost his hearing, that somehow in the illness Asher had gone deaf. And I remember being like "okay I can do this, I can understand this" and going ahead with the appts. I was worried but not panicked. I could sign, I could teach him, we could do this. But then brain stem stimulation showed that his hearing was perfect. This event started the year of our journey toward his autism diagnosis. Set back one, loss of communication. Set back two, loss of a happy baby. Set back three, loss of all social communication.

That was the beginning. In those early lost days I would leave playdates with out children and ugly cry the whole way home. It was hard to see a light at the end of our dark lonely tunnel. It was so hard not to despair. What had happened to my happy, social, noisy little guy? How does that happen over night, like a snap of the fingers? Switch of a light? Poof!

He has come so far since then. It is so hard to read his testing from last spring and even reconcile that he is the same little boy. It has been forever since I left a playdate without a smile on my face, left feeling despair. It has been so long. There have been little set backs, but we've handled them in stride. You learn to do that as an autism Mama. But we have been getting used to the upswing, because it feels so good to be on the end of things.

But then a couple things have happened. I got pregnant and life has been a struggle. I've been sick and not able to pick him up, play the way I used to, spend long periods of time reinforcing therapies. His classroom teacher left for a new position, we had to change his speech therapist because we could no longer make the hour plus drive. A couple beloved friends moved onto kindergarten. And because I'm not super mobile he hasn't see some of his important people as often as he used to. We saw the behaviors, but we understood them and told ourselves "Don't worry kids regress, kids like Asher regress"

But then it happened. We went on a nightmare playdate and I didn't cry on the way home, but almost. He was yelled at in public by a crazy dad who called him an "f'n brat, a little nightmare". Once again people started to give us that look like "Why do you bring him in public?" I've dealt with it all, I haven't cried. I even laughed at the crazy dad.

But then we went to a birthday party comprised of kids from two different special ed classrooms. Bar one or two, all the children there were special in some manner. Many of them carried the same DX as Asher. Yet my kid was the one who stuck out, the different one, the worst one there. We ended up leaving the party before a lot of the kids, he was over stimulated, friend, burnt out. And for the first time in a very long time I cried leaving a party or playdate. I cried the whole way home.

So today I prepped myself for Asher's parent teacher conference. I had been told ahead of time that it would just be the teacher and I, informal to discuss progress. My heart sank when I walked into the room and saw the whole team, including the autism specialist. Well crap. Really just "fuck" Sorry but sometimes there aren't better words. "fuck"

This summer I was so excited because the school had this awesome plan to ease Asher out of his sub sep room, move him into a typical classroom, with typical peers. We had this awesome goal for him and no one said he couldn't do it. The light in the tunnel was so bright. And I really wanted it for him. I really really did. When I went to bed last night, I thought "well they may say he has had setbacks" But I didn't expect them to change the plan.

It is funny, even though I sat there and I listened to all the reasons why the plan is no longer right, all the things that still needed to be worked on, everything that normally would have killed me to hear, I could still see the light at the end of the tunnel. It may be flickering and a little bit dimmer, but I think maybe I've allowed myself to grow and no longer to set backs as set backs and maybe just paths to a different turn in the road.

So I guess, even though it is hard to feel thrilled and happy, I am thankful that even in dissapointment, set backs, and deviations from a very much wanted goal, we can still see Asher's light burning brightly. We still see him moving forward. And that is something to be grateful for. It wasn't too long ago really that we sat staring at a baby that was completely silent and later a toddler who was so clearly different than what he should be. And even through set backs, we aren't there. He is himself, just Asher, and we'll take the set backs with the gains. We'll roll with it. And be grateful that we can still see the end goal. It is still there.

30 Days of Thankfulness Day One: Patience

When I was little I was “A lot of work”, a “Very needy little girl”, just “too full of energy, a child who “Asked too many questions”, a little girl that got told “Patience is a virtue” a thousand times a day. I was that child. Sounds exhausting.
I have vivid memories of my childhood. I remember whole conversations, experiences, situations, all in great detail. I am a sentimental person and I’ve held onto my memories, unwilling to let them go.


I have good memories, lots of bad ones, some just “ugh being a child sucks”, but overall I remember people never listening long enough, never stopping long enough, and getting left behind with something important to say, needing to be heard, needing someone, anyone to just hang in there and wait for the end, for the message, someone to say “Wow, hanging in there was difficult, but I’m glad I did” Incidentally, this happened to me a handful of times before I was 20. Once in sixth grade, because I had an awesome sixth grade teacher who went out of his way to make every single student feel valuable, important, and special. And then once in college when my favorite professor told me. “Holly when I finished that very first lecture I had with you, all I could think was this is my know it all student, blah blah. But shame on me, because I hung in there and I’ve listened. And what I’ve come to realize is that everything you have to say is important and useful. You’ve taught me to slow down and listen” The other handful of times were by a woman who took care of me and loved me, even though she didn’t have to. I have called this woman many things, my foster mother, my friend, almost like a sister, but now we know her as Asher’s Mimi.


It has never been a great mystery as to why I became a teacher and who inspired me to do so. And never a real mystery why I wanted to be a good mother more than anything else in life. But aside from these two teachers and a foster mother who really understood kids, no adult in my life was able to show me any sort of great patience. So I grew up with none. I can’t stand waiting in lines, time tables really bog me down, things like “Give me give five minutes” really drive me batty. I need fast paced conversation. Keep up people. Disney Land? Forget the kid not being able to wait in lines….damn. It’s one of the reasons I always answer “Epcot” when people ask me what I love most about Disney. I like walking around and getting instant gratification. Even things like starting a family, getting married, going to graduate school, the perfect job…..I was impatient. I couldn’t wait.


Sometimes God slowed me down. Haha Holly, you have to wait for your children because you have infertility. Married? No instead you’re going to adopt a teenager. The perfect job? Nope you’re going to need to muddle through a few until you find where you belong. Awesome creative conversations with my adorable toddler…no, SLOW DOWN, you have a special child. And all these things have been good for me and have required great patience. They have lead me to my life now. I am happy for the most part. I have a specific set of skills that make me valuable in my profession. I am a good friend, mother, sister, and I strive to be a good wife. It has been trying, but in these times I have been grateful for every single experience I’ve had with people who did not show me patience. They were examples of what I didn’t want to be and how to strive to become a more balanced person, one who can wait until things are supposed to happen, instead of trying to force them.


But Grateful for those experiences? Yes. I’ll explain why. Being a mother requires a great deal of patience, we all know that. Even the best mothers crack and lose it from time to time. But good mothers also need compassion and empathy. I feel like a lot of us in our rush to grow up, let go of our childhoods. We shouldn’t do that. We have to remember being a child, when little things felt HUGE and overwhelming. When things that seem so unimportant to adults, just take over little worlds. When an important point is muddled up in a long boring story that is spouted off in an unorganized, long manner….when you just need to hold on until the end to hear that important “little” thing….even if it means not answering the phone, putting down the laptop, losing a little bit of “me time” or setting dinner back 10 minutes. Good mothers need that.


And I need that more than I ever thought I would. I need the memories of what it felt like to be that little girl, who never felt heard, who never felt important, who wished everyday people had more patience. And I’m grateful for it. I am grateful for every single time an adult laughed me off, told me to wait and never came back to the conversation, every time someone did not hear me. I am just as grateful for that as I am for the handful of times I was heard.


I’m grateful because I have Asher. And Asher is a child that requires an incredible amount of patience. You really have to hang in there to hear him. Sometimes it means waiting until the end of a 20 minute dialogue from Lilo and Stitch to realize it was the only way he knew how to tell me that he loves his family. Because, “O Hana means family and family means no one gets left behind”. It means taking 50 deep breaths during a tantrum and sticking it out instead of walking away or getting upset, because usually it means that something is going wrong in a sensory manner, that he needs my help. It means listening to jargoning, patiently waiting for a message in language that is echolalic. Not losing it at the play space when I have to guide Asher through the signing and repeating of “I’m sorry friend” for the 80th time.


Patience. And I am not naturally a patient person, it was never really modeled for me. I never learned how to be. And to be honest, we just don’t live in a patient world. But when I want to snap, tune out, walk away, dismiss, I remember being that little girl and how big the little things felt and how it felt not to be listened to, to always be on punishment because it was easier to punish me than listen, to be misunderstood, and brushed aside as “very needy” And I know I will stick it out and I will hang in there for my son.


So I am grateful for the lessons I have been given in patience and how important it can be. Grateful for every single experience that has taught me that. How powerful and life shaping it can be when it is received, how it can change a kid’s world. So I will take the lessons I’ve learned and be patient with my son, always, because I love him and I believe that what he says should be heard, even if I have to pry it out of him, even if he tells me through tantrums and bad behavior or if he tells me through an ecrutiatingly long reenacted scene from Veggie Tales. He is valuable and he will grow up knowing that I know he is important. And maybe if I model it for him and show him what patience really is, instead of just telling him that patience is a virtue, maybe someday he’ll grow up and be an awesome dad, or friend. Maybe he’ll work with kids like himself or be an awesome sixth grade teacher, maybe he will be an example to all what this virtue of patience really looks like….who knows? But today I am grateful for patience and the strength to hold onto it and use it to be a better person.


I also want to say thank you to the few adults in my life that knew this and strove to be a model of this virtue even when I am sure it was difficult to do so. So thank you Peter Anti. Thank you Dr. Corinne Merritt. And thank you most of all Donna Webber. Thank you from the little girl I used to be and thank you from the woman that I have become.