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.

Fireworks

Someone sent me a link to a Katy Perry video not too long ago, I ignored it, because seriously, I don't like Katy Perry. It was someone who knew me well and I couldn't help thinking "really? I thought you knew me!" Turns out that person knows me so well, they know when I can get past myself and enjoy something on a different level. So a week goes by and I get a FB message "Have you listened to the video yet?" Only I haven't and I can no longer find the link. So this friend directs me to another friend's page and for the first time I see the title "Katy Perry sings Firework with Autistic girl" So now I have to watch even though I've never liked Katy Perry. Wow. I'd never really listened to the words before, it was just a poppy song that I would sometimes listen to on the radio if no other station had something better, but most times I switched it off.

But the words of this song, fit Autism so well. I'll share them here in case you've never really listed. I cut out most of the repeat chorus.

"Firework"


Do you ever feel like a plastic bag
Drifting through the wind, wanting to start again?
Do you ever feel, feel so paper thin
Like a house of cards, one blow from caving in?

Do you ever feel already buried deep six feet under?
Scream but no one seems to hear a thing
Do you know that there's still a chance for you
'Cause there's a spark in you?

You just gotta ignite the light and let it shine
Just own the night like the 4th of July

'Cause, baby, you're a firework
Come on, show 'em what you're worth
Make 'em go "Oh, oh, oh"
As you shoot across the sky-y-y

Baby, you're a firework
Come on, let your colours burst
Make 'em go "Oh, oh, oh"
You're gonna leave 'em all in awe, awe, awe

You don't have to feel like a wasted space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe the reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will glow
And when it's time you'll know

You just gotta ignite the light and let it shine
Just own the night like the 4th of July

Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through-ough-ough



So there is a lot in there that a parent of an autistic child can identify with, especially the first lines. But feeling trapped inside and screaming when no one can hear you, I often wonder if that is how Asher feels and what is must feel like for him. It is something I always worry about. To listen to these words and listen to an Autistic child sing them, broke my heart.

But more than that, likening Asher to a firework shooting across the sky, well that makes sense. Sometimes lights come on in his eyes and you can see the fireworks in his head lighting up. On these days we tell him "Wow you're on fire" Because sometimes he is so on it and so with it and so connected to us, himself, his thoughts, and able to communicate what is going on in his brilliant little mind. I really live for these days with him. On these days, it is almost impossible to see the things that make him so different from other children. I can see the fireworks, the little ball of energy shooting around my house, explosion of colorful ideas, make believe, intensity that would have been hard to imagine the day before. He is a firework. It is a perfect description.

So I think of him that way sometimes, a little closed up boy walking around with so much to share and sometimes I wonder what the future will hold for him. It is dangerous to think that way, I've blogged about it in the past, but with a child like Asher you have to live in the day and in the moment and appreciate the small bursts of shinning color when they come.

Lately Asher has really been into "Planes" so despite the fact that it got terrible reviews and he was terrible the last time we took him to the movies, we loaded him up and took him to see it. There were very few people in the theater, and at the table right next to ours, was a three year old little girl. She had adorable red hair and was sitting there so calmly and well behaved. Asher was excited to see the movie and I could see the wheels turning in his head, "Oh no! He is going to get overstimulated!" And I see him struggling, he is bopping back and forth between our chairs, running around the table, asking to be squeezed. And I panic for a moment thinking "Where going to have to leave and he is going to be so disappointed" Ugh. But this little girl came up to him and said:

"I'm Gabriella, wanna sit with me?"
"Yeah, I Asher, let's sit"

And so the two of them move their chairs so they are right next to each other. I glance nervously out of the corner of my eye at the other mom. But she seems fine with this turn of events "Phew!" So I sat back and watched, I listened, I was worried that like most kids, she would get frustrated eventually and he would be left sitting alone. But really as it happened that day, he was on fire. A little firework that charted excitedly to his new friend about the movie, kept her engaged in the conversation. You could see the fireworks going off in his head. It was adorable and what I would expect to see if typical kids seeing a movie together. They cheered when they plane was saved from the Ocean, they cheered when he won the race, they clapped at the end of the movie and I may have even seen them holding hands for the briefest of times.

It was one of those perfect typical days that Autism parents rarely get. And when they do, it is like a gift. I will never see fireworks for the rest of my life and not think of Asher. Hopefully, I won't have to think of Katy Perry every time, but even so, if I do, I just want to say thank you to her, that she is the type of person who would do something like this:



http://www.youtube.com/watch?v=QX-xToQI34I

Its been a while...

I'm a bad blogger. I may have mentioned that in the beginning of the whole "cole slaw" project. Maybe I didn't. I haven't updated for two reasons and they are contradictory to each other. 1. There hasn't been much to blog about 2. And there has been so much going on that I haven't had time. Lol. I know that doesn't make sense. But I guess what I am trying to say is that not much has been happening that I think people would really want to read about.

Our lives have continued in the same daze of therapies, fighting insurance, and work work work. Just nothing dramatic. Asher started school, he loves it! He is on a two week break right now and cries for school every morning. I hope he loves school this much when he is older! The two week break has given me the opportunity to do intensive potty training, which was encouraged by the Autism Specialist he sees. He has been successful in many ways, but we've failed miserably in others...mainly in the poop department. Its okay, baby steps. Having Asher as my little boy has really taught me to be okay with taking small successful steps. Patience has never been my strong point.

Asher's language has really taken off! We do sometimes still see the differences between how he uses his language and how typical children use language, but I think his speech is in a pretty good place. The thousands of dollars spent on intensive speech therapy were the best dollars I've ever spent. I'd do it again in a heart beat. The older he gets though, the more clear the parts of him that are "autistic" become. For example, he is so damn rigid with his language.

This morning the house creaked and Asher said "Woah what that?" I told him "Don't worry the house is creaking" He immediately sprung up from the couch and said "Oh no my house is breaking!" I told him "No creaking! The house is not breaking!" He said "NO! Cracking! Is Breaking!" And he has been stressed out about it ever since. He walked up the stairs just now and came back down when he was just halfway up because a stair creaked and he didn't want it to break with him on it. I kinda wish I could go back and use a different explanation like "The house is just saying "Hi" to us" He wouldn't have understood what I meant at all, but he would have accepted that I gave him a passable answer and moved on with his day. Now he is stuck on the damn house breaking and it is driving me batty. I would be thoroughly annoyed if it wasn't for the fact that it is clearly causing him anxiety. I just have to sigh at this point, hug my little boy to reassure him every two minutes, and silently wonder to myself how long until he moves on from thoughts of the house breaking. I'm going to be so mad at myself if I'm still dealing with this in a week...which for us is a very real possibility!

In most ways though, he has just become more of a delightful little boy. He has so many interests and has really started to take of with imaginative play...its really fun to watch! This leads me to my last sentiments for a while. I know this will receive mixed reactions, so I'm saying it now to save myself from hearing dissapointment when the actual time comes. So many people have really had strong opinions about this. But after some really careful thought, searching our hearts, going through Pros and Cons, Phill and I have decided that we very much want another baby. There are so many reasons, but it comes down to not wanting Asher to be alone. I love my brothers and sisters, each one of them represents one of the best parts of my life. I want my son to have that, I want my future child to have that in Asher as well.

That being said, I really don't want to be asked questions about Autism and our fears that another child will have it. The answer is yes, we worry, but we still think that life would be valuable and we cherish Asher. If you ask us that question, it will feel like a slight against our beautiful little boy, so please don't do that. We really don't want to field questions about statistics that a new child would also have Primary Immuno Deficiency and get any sort of judgement in that regard. That is why I am saying this now, so that when the time comes, we can have people just be happy for us like they would be for anyone else.

We've been trying for a while now without success and have moved on to fertility treatments. It could take a long time. Who knows. Whatever shall be shall be. And it is what it is. Hopefully we can all see eye to eye on that much.

Telephone

Lately I've been feeling deja vu multiple times a day. I think it has something to do with the day in Kindergarten we learned about the game of telephone. I remember it being so much fun and how each time someone whispered in my ear I was convinced that go around we'd get it correct and prove our teacher wrong...we never did. The game of telephone isn't fun when it is no longer a game and you're dealing with adults who are completely inept at their jobs. But the result...exactly the same, a jumbled mess of meaningless information that is loosely based on the original message/intent....and it never gets to the person it should, when it should, and why it should. It is very frustrating.

The frustration a special needs parent feels on a weekly basis just trying to coordinate therapies and services for her child and figure out how needs to be paid what and when is unreal. Imagine having to wait in line at the registry everyday. Each time you make it to the counter with all your paperwork nicely filled out, you're told you have the wrong form, please exit the line, take this correct form and start the process again, just wait for hours, get back in line and to get to the counter and to be told yet again that you filled out the wrong form, please exit the line, fill out this form and so on and so forth....for months. But in our case it has been going on since Asher was 15 months old. Can you imagine over a year and a half or waiting in line at the registry? Over year and a half waiting on hold on the phone. You get the picture. And it is frustrating

So Asher starts preschool soon. A huge transition for him, for us, for life as we know it. We have just now really gotten used to the plan we have in place, begun to build a life around the complicated schedule of a child with Autism. It isn't easy, but we've done it because honestly, that is how much we love him and it has become the only way we can truly say without words that we love him that much, that life, our life, his life, that the Cole family, will make sacrifices that most families cannot imagine making, for one beautiful, sweet, loving, and broken little boy.

So I've been living on the phone. Living. Every second not spent driving in the car to therapy, participating in therapy, or the hours I'm at work (and sometimes even those) is spent playing telephone between service providers and my health insurance, service providers and the public school, public school and Early Intervention, I'm exhausted. I'm frustrated. I can see why some parents just give up. Of course I won't. I can't. I wouldn't be able to look my little boy in the face if I did. But I can see how it would be too much for some people.

I need a translator. My own personal translator that can sit on three way calling and translate every single conversation and provide me with an accurate transcript including original message, the intent, and next steps. Which is all really silly, because in what seems like another lifetime, although not terribly long ago, I used to be that translator for other families. Why is it that I can't translate effectively for myself. Good Lord, it must be that not only are the lenses of my glasses tinted with emotion, but my ears and the ear piece on my phone is as well.

Or it is just that I am dealing with inept people who work for a broken ineffective system. I don't know. What I do know is that my heart goes out to all the Mamas that have to do this without the support of a husband or loving extended family, for the women who don't have my amazing sister, or live in a state like we do that actually offers services, even if they are complicated to set up, for the women who don't work in the field that have to learn the code from scratch. For all my special needs Mama friends who look to me, as lost as I am, for answers....you guys are my heroes and the absolute best of what the world has to offer.

So tonight I'm putting down the telephone. I've allowed it to take over too much of my week already and it is alas still just Monday. And I think tonight I'll shut the phone off. So if you're looking for me, it might prove to be tricky, that is unless you know what to listen for. The very best baby/toddler belly laugh around. Follow that sound, you'll find me chasing my little boy, tickling his feet, building towers and knocking them down, maybe even playing one of our epic two hour hide and seek games. Sounds glorious.

As Luck Would have it.

Throughout your life, people will tell you a lot that you are lucky. As a child you use the term positively "You are so lucky!". It took me a long time in my life to realize that there are two types of luck. Good luck. Bad Luck. When people say "You're so lucky!" They could be in fact commenting on the fact that everything bad happens to you. This is the way of my life. And it isn't me having a bad day, feeling awful for myself, it is just the facts. I look at luck through this lense. I was born to a poor family, I lived in the worst, most dangerous part of inner city Boston. They write books about the projects I grew up in. By age six I was being bounced back and forth between family members, and age 8 it was off to foster care. That was the start of my luck. I could mention that if an accident is going to happen...it will. I've been hit by a car, fire cracker back fired...exploded in my face, as a baby I fell three stories out a window. Hell lets starts with the fact that I was born at 27 weeks gestation. I've been in multiple car accidents. And if an illness is rare, I'll probably get it. If the side effects of medication are uncommon, I'll expect to see those too. It is just how it is. If I were a glass half full type of girl, I would say that my real luck in life is that I've managed to survive at all. Maybe.

All that aside I've been thinking a lot lately about the expectations I've had for my life. I certainly didn't forsee it going down this way. When I was a child, in the middle of a crappy childhood, I promised myself that as an adult, when I gained all control, that I would make all the right choices and that my life would be better. I promised myself that if I did anything right at all, I would make sure that my children were happy, had the best childhood, it wouldn't matter what sacrifices had to be made. Stupid promises. Of course I made them, so I am trying to realize them, but how naive was I? Seriously. As a child I knew nothing of things like Autism, the statistics, the effect it would have on our lives. If you had said oh 1 in 88 which means it probably won't happen to you, maybe I would have been smart enough to say "Well, crap, it probably will happen to me then, because everything happens to me" Historically speaking, its just how its been.

So of course, because the Flu can be gotten, we got it. I should have expected it you know? I feel silly that I didn't. When will I learn? But we got the flu, it happened. It was awful. I wonder for a few days there if we would even survive it. But then maybe that is the flip side of my luck...it drags me through hell and back but somehow allows me to survive. But we were very sick...bed ridden sick. Then Bam! Have some Pneumonia. Just for kicks and good measure. I mean why not? So its been two weeks of struggling to breathe. Pure exhaustion. Broken sleep. And I'm wasted from it. Asher hasn't seen one of his therapists in two weeks. He hasn't gone to school. Hasn't gone to gymnastics. Hasn't seen his Mimi or Grammy. He tells me he misses Emmy, and Zoe, and Mimi, and Deb, and Grammy. He cries in the middle of the day to call Daddy at work. Just to call Phill crying, saying "Miss you daddy, a love you" and make Phill feel guilty for going to work. This is how our two weeks have been.

And he has regressed. Sometimes his speech is barely intelligible. Meaning I can barely understand him. He is back to jargoning (think of hearing sentences that sounds like tigga tigga tigga right mama?". It is sad to watch and a sad realization that as luck would have it, Asher would be a child that experiences substantial regression in short periods of time without therapy. Awesome. Although really, whose fault is it that I didn't see it coming? My own. That dissapointment....it is my own fault. I let it smack me in the face, when I knew in the back of my head it was coming.

Last night Asher woke up for the fifth time, coughing and wheezing, saying he was scared. So I brought my baby to bed, I cuddled him close, I stroked his hair. And somewhere in my cloudy brain the Taylor Swift Song "Ronan" began to play in my head. If you haven't heard it, it is about a gorgeous 3 year old boy who died of cancer. Ronan's story has been close to my heart for a long time now. I often have to put away my thoughts of Ronan, because it makes me too sad. But last night, I thought of Ronan's Mom Maya while I held my almost three year old and couldn't help but think about my luck again. Really luck is in the eye of the beholder I guess. For all my bad luck. For all the crap that has happened to us. I was there, holding my little boy. Something I know Maya would give anything for. So I hugged him close and I fell asleep.

Last night I dreamed in painful detail of the car accident I had when I was 20 weeks pregnant with Asher. It was so real, like it was happening all over again. I could feel the panic. And that thought that played in slow motion as my car spun out of control, "there is no way my baby will survive this". Painful detail. I woke up with a start, sweaty and gross. And I lean down and kiss a fuzzy little head that is laying against my chest. As luck would have it, my baby has survived a lot. Even before he was born, he survived a lot. His luck it seems, looks a little like mine. Bad shit finds us, but we survive. I don't know if that is good luck or bad luck, or if it is just what it is supposed to be. But last night I hugged a baby I thought I'd never have. And for a small amount of time, I forgot about his Autism, his regression, his immuno problems, his allergies, I forgot about everything that makes him different, everything that has lead to a huge deviation from the life I thought I'd be able to give him. I hugged my lucky little boy. And just for a few precious moments I thought to myself. "You are so lucky"

A day in the life

We have been busy. This is nothing new for us. Having a child like Asher dictates that we spend our days going to and from appts, therapies, school groups...etc... Just how it is. For the most part though, life has a predictable pattern and we sort of float through our routine because it is our normal. When our life went from normal to crazy, I used to think "There is no way I can do this" but it has just become what we do at this point. So we sail through our busy weeks and don't really stop to reflect on just how much we are taxing ourselves, until a wrench gets thrown into the mix.

In this case, I'm referring to two things, unexpected surgery and a massive snow storm. Our routine...squashed. Now Asher isn't a spectrum kid that relies on a strict routine, no its me that needs the routine, the map to my organized life, otherwise I have too much time to think and that leads me down a path I don't want to go. I'd rather just enjoy the unexpected tid bits of sunshine and not think about the looming rain clouds...so to speak.

But we do have a lot looming, and the break in our schedule gave me a lot of time to think and reflect. First off, school is coming....for both of us. I have gone back to work, which means Asher and I aren't spending every single waking second together. Sitting in on hours and hours of therapy is exhausting. It is nice to get out there, catch up with co-workers and people I've missed, have adult conversations, use my brain, but I do miss Asher. For all his difficulties, he really does light up my life, and I miss his warmth when we're not together.

Asher starts school soon too, in less than two months. Right now we're talking to the public school system, setting up a health plan for Asher, and starting the evaluation process for the Integrated Preschool. It is so strange that my baby is actually old enough to go to school. When did that happen? Hmm. But I do have to admit, that when I look at him now, he is looking like a child and not like a baby, not even really like a toddler. He looks like a young child. Wasn't it just yesterday and forever ago at the same time that he was born? I mush have blinked at the wrong moment and missed something huge. Either that or being sleep deprived for three straight years has lead to memory loss. Either way, I wish I could go back to when Asher was six months old and just cuddle him for an hour while he sweetly naps. I recognize his sweet face in his pictures, but it hard for my brain to remember how he sounded, giggled, and cuddled at that age. In that way, I wish my memories were 4D.

Anyway, the school system is being really good to us regarding Asher's allergies. I've been very worried. I haven't wanted to talk about it, but it has given me a great amount of anxiety in the month leads up to where we are. I have trust issues I guess and I just don't believe anyone will take as good a care of Asher as I do and as my sister does. Most parents worry about violence and things like what happened at Sandy Hook. Those are real weapons...more tangible...they are a symbol of evil and harm and generate fear. But for us, what nourishes someone else' kid, is a weapon against ours. It is a scary scary place, Asher's world is. But we don't want to teach him to live in fear, that is no way to live. We don't want to program him to be afraid. This is difficult to do when you are living in fear yourself.

So Asher starts preschool in April. They have made great accomodations for him to be there. Peanut free school, dairy free classroom, wheat free table.....yet I'm still scared. Am I nuts? The snarky part of me also wonders how many enemies we've already made amongst the other parents who will have to make huge changes to their children's school foods just because my kid is coming to school. I know we won't be popular. It is not that I don't appreciate how difficult it will be for people to make those changes, its that I'm selfish and I don't care. I guess maybe because changing Asher's diet so that someone else could be safe, instead of changing our whole life just to keep him alive, seems like the better side of the fence to be sitting on. An inconvenience to be sure, but no fear crawling up your spine. I think I could do that for someone else' kid. But people love their peanut butter, so who knows how many people will resent our presence. Oh well.

Asher had his three month follow up at LADDERS a few days ago. This is always something that causes me to lose sleep. I don't know why and I guess it is foolish, I mean what can they possibly say to us at this point that is worse than the blows they have already had to throw our way? I mean its not like his Autism was in remission and we have to worry about it coming back. It is there. But I always get anxious about it anyway. Having Asher has made me into an anxious person. But our LADDERS appt went well. If anything, they gushed over how much progress he has made. In my brain I know he has made huge gains, but I'm with him everyday, so they don't seem as "woah" to me as they do to people who only see him every few months. So for an hour and a half I listened to Asher's neuro praise our parenting (Which is only funny because most of Asher's progress is a result of good therapy and Asher's own hard work) but it is nice to be told you're a good parent anyway. It is a nice change from the judgemental stares we get everywhere else, so I'll take it while I'm getting it. She also told me that Asher is looking a lot less "Autistic" in a way that non professionals would recognize. Meaning to people who aren't in the field, he could at times appear quite typical. This is meant to be good news. Only depending on how you look at it, half full or half empty...in this case half empty, because that also means that at times, he is still clearly impaired.

Our neuro also raised a question about Asher's jargoning...which is nonsensical made up "autism" speak. It sounds a little like a sentence comprised of "tigga ligga dooga right mama?" Is is a marker for Autism that is used for diagnosis. With Asher is was never very clear to me and I questioned early on if Asher was having difficulty sorting his ideas and planning how multisyllabic words and long sentences would come out of his mouth...in short oral motor planning. His SLP has always maintained that Asher has all his sounds and none of the markers for a disorder called Apraxia or maybe in Asher case Dyspraxia....I know a lot about language disorders, but the finite difference between the two of those still confuses me a bit. But anyway, our neuro said for the first time that what she thought was "jargoning" in the past is starting to look more speech disorder related. Is this good or bad news? I don't know. I really don't. Who is to say one thing is better than the other really? It would just lead to changes in therapy and give me something else to worry about...please bring on the Prozac! (Which aside from the horrid headaches, is amazing stuff and I think everyone should have some) So anyway, add that query to the list of other things we have to question day in and day out and that is where life is at.

A week ago I had a conversation with Asher's SLP about how Awesome Asher's play skills and play with other kids has gotten. That same afternoon I took Asher to the playspace in the mall to play while Phill was in surgery. I shouldn't have been so quick to brag on his playskills however. Asher has been enjoying a show called Shaun the Sheep. If you haven't seen it, the animals on the show have personification, but they still speak animal speak, so they basically tell the story through bahhhing and mooing and oinking. Asher loves it. HOWEVER, not all children watch Shaun the Sheep, so when my child is chasing them around the playspace screaming "Bahhhhhh! Bahhhhhhhh! MEEEEEEEH!" the other children run screaming, look uncomfortable and go to sit on their parent's laps. And then I get the looks from the other parents that say "What the fuck is wrong with your kid and why do you take him in public?" Sigh, you don't have to hear the words to interpret the glares. So no more Shaun the Sheep for a while, I guess. I do have to chuckle and admit that sometimes at the expense of other people, I do take out my "fed up of being judged" on the glaring helicopter parents who have deemed my child the "strange boy" and say "Oh I'm so sorry, you see he has Autism and just wants a friend to play with, he is lonely. Lol. Which is true, but it makes them look uncomfortable and a smidge ashamed of themselves. It at least evens the score to judgemental mom 1 and Asher's Mom 1. I'll take a tie sometimes. I'm okay with that. As long as everyday is not a losing day.

I know that most of my posts are shorter and organized with some sort of message or theme, but my routine got messed up, my brain is unorganized, and what you see is what you get. A day in the life of the Cole family..appts, meetings, judgmental glares, and more questions. Cheers and much love from us to you.

The Expected Becomes Unexpected

I feel like I often only have the itch to update our blog when I have something profound, deep, very funny, or sentimental to say. This if course means that I don't update often. I mean we live a normal life, it is not all "ah ha!" moments, epiphanies, and self realizations.

A friend once told me that my blog entries are always lovely and deep and hers are always "I'm grateful for chocolate" Lol. The truth is, we have many days that nothing exciting happens at all. In that I no longer have expectations for how things are supposed to go down. I really no longer look forward to milestones that I can brag about, that leads to disappointment and sadness, and really why do that to our family?

When Asher was born there were a lot of thing I expected to happen, normal things, but markers and milestones that I looked forward to happening because I knew that they would. Teething, crawling, walking, talking? social talking and reciprocity? Those things just didn't happen the way I expected. There are a lot of things I didn't expect as well. Medical problems, sensory issues, speech delays, developmental disorders, Autism.....I didn't expect any of that. But over time as these things appeared in our lives, we started to realize that we began to expect those unexpected things to happen. Our new normal changed from "why us?" to "why not us?" and "it only make sense at this point that one more thing would fall down on us" This reversal in thinking happened slowly, but it is what it is.

But sometimes, there are things that go down that I had at one point expected to happen. These normal things, the expecteds, they are all very unexpected, so when they happen and we are shocked, people look at us and say "well yeah, of course, what did you expect to happen?" I guess I expected anything but the normal, the regular, the "of course!"

The other day my niece Kylee came over to play with Asher. For the most part they still play side by side, but only sometimes with each other. This is expected for me. Kids like Asher with PDD-nos tend to play by themselves, and even though Asher has a bright social spark (His neurologist's words, not mine) and doesn't meet a lot of the social markers for Autism, he is still behind in some of his play skills. This is our expected.

Sometimes I will sit with Kylee and Asher and script the play for them, ask questions, give them language, help them take turns and share. This is something I've become quite good at in all my years of teaching language impaired kids. We often joke that I went to school for language disabilities because God knew the kids in my life would need me to have those skills, not really to be a language teacher. As it stands for now, I can do both.

On this particular day however, I decided I needed time to read while they were playing nicely, quietly, and didn't really need me. I expected them to play by themselves, I expected fights about sharing, I expected Kylee's feelings to get hurt and for Asher to have zero empathy towards her. I expected these things, because again, things that would concern most people have just become normal.

But here is what happened instead. I'll write this up like I would write up a language sample to make it easier to follow.

Asher: I go a party
Kylee: Was it a burfday party?
Asher: Yeah
Kylee: My burfday is Sesame Street Abby party
Asher: I haffa Buzz party
Kylee: You have cupcakes and chips at the party
Asher: haffa buzz cake
Asher: haffa sheriff woody inna aliens
Kylee: Asher you should have cookies and candy with those cupcakes
Asher: yeah candies
Kylee: Can I have some candies?
Kylee: Can I have some alien candies?
Asher: Aliens!
Kylee: Asher you crazy!
Kylee: Auntie Asher is crazy
Asher: yeah I crazy.

Most people would expect a conversation like that with an over 4 year old and a basically three year old. I'm not saying they wouldn't smile and think "omg how cute, I can't believe I heard that! Aww they are getting so big" They'd be impressed sure. But they wouldn't be sitting there crying, thinking "Oh MY GOD! They are Geniuses! The SMARTEST kids alive!" Which is what runs through your head when you never in your faintest imagination and wildest dreams saw a conversation between two language impaired children going down in this manner. I'm sitting here all proud Auntie and so happy I'm crying Mama, over something that should have been completely expected or even if you're one taken to brag like myself, a moment that would have lead to a Facebook "My kids are so cool listen to what they said" comment. But I couldn't move. I just sat there listening and hoping for more, with an insane amount of happiness, but also shock running through me.

And it all circles back to the funny little thing in life called Hope. People often say "wow you're so positive!" Which you know, isn't the most truthful version of how things go down...not at all. I'm learning with the help of others to be more positive to be more hopeful, but I'm not Miss Sunshine. I often feel like "poor Asher" and "poor Phill" have quite a battle ahead in life just having to live with someone as difficult, sensitive, and taken to saddness too often and too easily. But I am trying for them.

I also get comments about hope. Asher's neurologist often says "I don't know how you're doing it, but you're holding onto that hope! Not all parents can and do" This is how it happens, your hope hovers somewhere below the norm, sometimes it is barely a whisper. You wake up and you expect to see a child struggling with skills well below what is developmentally appropriate. And hope is just laying somewhere dormant in the back of your head. This is what you expect, to have what others would consider a worrisome day. And then you get instead what others would completely expect to get waking up to a new day and it is so unexpected. And your hope taps on your shoulder and says "I told you so, now stop moping and go enjoy that little boy"

But you know on the surface, nothing profound, amazing, deep, sentimentally gooey here at all. Just two little kids, playing together, having a fun conversation planning a birthday. Just a simple expected day, or is it?

The student becomes the teacher...

I once read a quote that made me giggle for days. "It is called the terrible twos, because "fucking awful" doesn't start with a T" Even typing it, I giggle. There are many thing I enjoy about Asher being bigger, I like that he chats more, he wants to tell us stories, that he is more independent in some ways and needs us more in other ways. If I could count the amount of times in a day that he needs boo boos kissed, hugs, or snuggles....well I'd be rich if society really placed value on those things. As it stands, I put a lot of value on them. Which is why I love this age. HOWEVER, it comes with challenges.

There is the sharing challenge. The biting challenge. The tantrum when something doesn't play out exactly the way I want it to challenge. The picky eater challenge. The nose picking challenge. The I don't want to wear shoes challenge. The I want to wear shoes and I'm not taking them off so deal with mud and snow on the floor challenge. The I don't want to use the potty challenge. The I want to wear underwear, but not use the potty challenge. The I really want to use the potty but didn't make it so now I'm going to cry for hours challenge. The don't you dare brush my hair or my teeth challenge. The I don't want to take a bath challenge. The I want a bath so bad that I don't care what else we are doing, you will stop and give me one right this instant challenge. The I want to dump out all the drawers, cabinets, and empty all bookshelves of books challenge. The I wonder what this taste like challenge...which may include things like bars of soap, shoes, cat litter, or the toilet bowl brush. The I will not sleep when you want me to challenge. The I will sleep smack dab when you don't want me to challenge. The Auntie's playroom is better than mine so I just won't go into it sit outside and cry for my toy's challenge. The hitting when frustrated challenge. The I want to be naked and I don't care who is over challenge. The pulling the cat's tail challenge. The I wonder what my poop will look like on the wall, in my hair, in the carpet...anywhere really...that challenge.... The list goes on and on. If you have children, I'm sure some of those brought a giggle. If your children are older, you read them and thought "I'm glad we're out of that phase" or you thought "She left out these 500 challenges" Trust me, it is not because we don't have them, it is because my wrists will ache if I list all of them.

So instead I need to talk about the challenges that are unique to Asher and kids like Asher. If being two wasn't difficult enough, being two and Autistic or with Autistic tendencies...well that takes the cake!

While Asher has made tons of progress with language, he still struggles to communicate when he is frustrated. And people will say "all children have tantrums" Thank you, I understand that. I was a nanny, a big sister, I am an aunt, my friends have children, I've worked at a daycare, I've gone to the mall, toy stores, Target....for some reason there are lots of tantrums in target, I am a teacher. I am surrounded by children, I've seen normal tantrums. So feel confident that when I say Asher's tantrums are sometimes very different, that I have considered what a normal tantrum looks like. And these tantrums are epic, not because they are louder...sometimes they are, but often times not. Not because they are violent, because they aren't, not because he is more angry. No, it is because he is sad. Mournful and dissapointed, and almost defeated. He struggles with the concept that mistakes happen even when you try hard, even when you want it more than anything else.

Asher takes his failures like they are marks against him and he will apologize to us for hours. Sometimes I fall asleep at night and hear the echo of "Sorry Mama!" in my head, due mostly to the fact that I had heard it so many times that day, but more importantly, that he was so deeply sad when he said it. And he still doesn't understand that he doesn't have to be sorry that he didn't make it to the potty, or that he slipped on the ice, or that the cat scratched him, he spilled a little water, or that he couldn't think of a word.

He is sensitive to the word "sorry" so trying to teach him when to say sorry has been a "special" experience. When he hits or pushes, he can't bring himself to say sorry. This happened to me when I was little and I think it had a lot to do with pride, but for Asher is has a lot more to do with the sensory over stimulation that lead to the behavior in the first place. So we hug him from behind and take his hand for him and make the sign for "I'm sorry" on his belly, while we make him look at whoever he is trying to say sorry to. He always goes and gives the other person a long extended hug and after a few minutes will say "Sorry Mama...Daddy....Kylee...Ethan...Auntie..." But it has been almost as tough to teach as potty training...almost.

A few days ago I was sitting in the living room and my cat Dr. Seuss, scampered by me and dug his nails into my leg in the process. I immediately yelled "Seuss you suck!" Asher came up beside me, took my arm and made the sign on my belly for "sorry" and said "I sorry...say sorry...sorry Seuss!" Then he put my hand down and said "huggies" So I picked up Seuss, who still sucks by the way, and I hugged him. When I put Seuss down Asher said "say" I tried not to smile, because this is serious business for Asher, it was tough though. I looked at Seuss and said "I'm sorry Seuss, that was a mean thing for me to say" And Asher smiles and then gave me kisses. After kisses he ran away to play with his toys, but stopped at the door and said "Mama?" "A pwod a you" He was proud of me! And that made me tear up a little.

So some of our struggles, they suck. They are sad, frustrating and sometimes they make us cry. Sometimes it doesn't seem like Asher is learning anything from us at all, than nothing is sinking in. But then the light turns on "Ah ha!" and the student becomes the teacher! I'm grateful for the "ah ha" moments Asher gives us, when we realize we have so much to learn from him still, that we will teach him many things about life, but it may just be that he will teach us so much more.