Thursday, April 25, 2013

"That doesn't soften the ache we feel when reality sets back in..."


This is another essay I wrote a while back- nearly a year ago. I published it on a blog that nobody read because while the writer in me wanted to share it with strangers, I couldn't face having people I actually knew know that I was feeling this way. At the time, trying to be happy and smiley and funny about Autism was my goal. If I could laugh at it, it couldn't be that serious. It was such a facade because PJ's diagnosis was too new, too raw to have a comfort level with. So while I wanted to be funnyhappysnarky girl, I was really darktwistysad girl. I'm not either of those girls now- I like to think that with all of PJ's growth and progress came a bit of growth and progress for me, too.
**********

I had dreamed of being a mother for as long as I can remember. I wasn’t exactly a girlie-girl, so when my friends started getting married, I didn’t feel even a blink of jealousy, but oh. When my friends started having babies, each sweet face I snuggled and squealed over left a bitty little dent in my heart. My ovaries ached at each wasted egg. Pete and I became engaged and we eagerly planned the time that we would start our family.

So, of course, after a lifetime of planning the arrival of my first child, my pregnancy was completely unexpected- the result of my jumping Pete’s bones one night (March 10th, 2009!) after he did something so kind for his goddaughter that it made him even hotter in its kindness. True story! Seeing two pink lines when I really expected one sent my inner control freak into a tailspin, but after a day of shock, I settled into the happiest time of my life. I loved each doctors visit, loved maternity clothes, loved the shape of my growing belly. I wasn’t one of those cute pregnant girls; I carried high and low somehow. I wasn’t cute, but holy Christ, I was so happy! Two and a half weeks before my due date, I went into labor in the middle of eating dinner and watching Glee! A few hours later I was chickening out of natural childbirth (I got my epidural at 9cm. I’m such a pussy.) and a little over an hour after that, my son was in my arms. Peter Joseph, Jr had arrived and life was going to be new and wonderful!

Motherhood…hell, parenthood in general isn’t always easy. But my boy was an amazing infant, he slept and ate well and somehow made the things that everyone had said were hard so, so easy. I could hardly remember what it was like before this tiny blonde dude has been in our lives. Pete and I both fell deeply, madly, and completely in love.

PJ started to grow into toddlerhood and we could see that his development wasn’t going as it should have been. On the surface, we kept our heads and did all of the right things- spoke with our pediatrician, utilized Early Intervention, made appointments to see developmental specialists, audiologists, geneticists. And most of the time, we felt okay. We felt confident that we were doing right by our son and hopeful that things would improve.

It was only after a bad day, when a random tantrum would lodge itself in my heart or I would notice one of the many “red flags” that were noted in his Early Intervention evaluation, that I would fall apart. I wondered why this was happening to us. I spit fire at myself for sometimes missing a prenatal vitamin or drinking the occasional coffee while I was pregnant. I raged at myself for getting the epidural. I wondered if something could have happened during the surgery to correct his hypospadias that somehow deprived him of oxygen. I cursed and shamed myself for not being able to do what women have been doing for a thousand years- gestating a healthy human. I looked at my son, my beautiful, funny, snuggly son, and wondered where the hell I went wrong.

When I wasn’t slamming myself, I aimed my vitriol at others. I had worked in an HIV clinic, for God’s sake, and had seen women who had AIDS manage to birth a healthy baby. “Teen Mom” was filled with moronic high-schoolers who pushed out bright, camera-ready babies. I knew people who couldn’t find their way out of a wet paper bag who had children on the honor roll. Cheerful posts on Facebook about the accomplishments of other people’s toddlers broke my heart. What would I write? I couldn’t write about what was happening to us, and I hated the breezy updates from people who could. And then I hated myself for feeling that way.

It was ugly, folks. It was dark and it was ugly and oh, God. I hated myself for feeling like that. Worrying about the amount of eye contact my son made wasn’t an issue because I couldn’t even look him in the eye. I was afraid that he might somehow see all of those horrible thoughts and then he really wouldn’t want to look at me.

I wish to God I had talked to someone about how I was feeling. Of course, Pete and I talked often about our fears and plans and hopes for our son, and I have a few amazing, wonderful, giving friends that I leaned on. But, I kept all of that ugly inside out of shame, and I wish I hadn’t. I wish I had even blogged about it because giving it some air might have helped. Even though I kept it bottled up, PJ improved every single day and so did I. Autism isn't such a dark place for me. I can even laugh about some things now, and that above all else is a good sign for me!

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I'm not anywhere near this place now. Pete, PJ and I have grown so much as a family, and our outlook on everything has changed exponentially. Not to say that we don't have our moments, but we're not comparing ourselves and our son to every other family and their children. We focus on PJ, and only compare his development and milestones to the development and milestones he hit the day before, and on the days we don't, we pick back up the next. We have learned so much in this first year of PJ's autism diagnosis, and I am both fearful of and excited for the years to come. Raising this Boy of ours is a huge, amazing, life-changing honor, and we hope to live up to the responsibility.









Sunday, April 14, 2013

How will I know...


This is another essay that I wrote a while ago, but it is something that I still struggle with- do I tell people who I know casually or whom I was just introduced to that PJ has autism? Obviously, I blog about it to death, but since like, 8 people read my blog, I can't expect to find fans on the street who will automatically be in the know!

Well, not yet, anyway. ;-) Until that time, I need to figure out how and when I introduce my sons special differences to people we meet.

ooo*OoOoOoOoOoOoOoOoOoOoOoOoOoO*ooo

PJ and I got an invitation to meet up at a local park from another mom in our area. We had never met before, but I had joined a Facebook group to expand my circle of mama-friends and for PJ to interact and make friends with lots of kids his age! We’ve been so, so blessed in the group of amazing friend that we already have that I decided to push my luck!


My luck continued as the mom I met up with was sweet, friendly, and easy-going! Her adorable son was the perfect age- old enough to be a great example for PJ to model but not so old he left him in the dust (and he was super handsome!). The boys tore around the playground as the mamas chatted and it was, all together, an extremely pleasant morning. We left the playground having exchanged numbers and with promises to make plans again.

PJ was in a great mood, despite the humidity, and the boys interacted beautifully together! I think I noticed some "atypical" stuff more than our new friends did- PJ was walking in circles a bit, and his speech delay is a little more clear in comparison to his age now. Still, for the most part, there was not anything noticeably different about him, at least as far as I could tell.

There were a few times in our conversation that I was about to say “Oh, PJ has autism”. I held back in this case because there didn’t seem to be any glaring reason to point it out (i.e, he wasn’t doing anything exceptionally "Autism-y"). If we continue to hang out and get our kids together, though, I am sure it will come up. How it will come up is the question. I am lucky enough to have a lifetime to be PJ’s mama, but does that also mean I will have a lifetime of outing him as autistic to people?

The funniest thing is, the few times that I have had someone make a negative comment regarding his behavior, I have wanted to let them know right away that he is autistic. I also wanted to hit them with a bat, but that is neither here nor there. The issue is that in a more natural, easy setting I find I don’t know what to say. Do I mention it when my son is throwing a tantrum? Walking in circles? Playing tag with other children, a smile on his face? Do people even want to know? And goodness knows, sharing the news with our family and friends can’t be counted as among my more articulate and gentle moments (that story is for another post!). If I stumbled so badly telling those in my life, how will I share with the people in a more peripheral place? I can only hope that the answer will come with time, and that Pete and I will develop a natural instinct about who needs to be in the know.


Saturday, April 13, 2013

"You can't expect me to be fine, I don't expect you to care..."

{stream of consciousness}

(I just went over what I wrote and it makes no sense. But whatevs. I'm hitting Publish. I'm a rebel like that.)
It's a Friday night, and I have all of the lights out, a yummy smelling candle lit, and a cup of coffee. And to add to the tranquility, I'm watching "Say Yes to the Dress- Atlanta".

Ahhhh....

This writing project I have embarked on has been cathartic for me. While a few of these posts had been written a while back, it is the first time I have been willing to truly lay myself open to my feelings about PJ's autism diagnosis. It's been a little over a year since his diagnosis, and I have learned so much, with a lifetime of things to learn before me.

Today, we woke to gray skies and spring rain. The morning was busy- I was meeting a friend for coffee, reading to PJ's class, and then returning to school later for PJ's IEP. I had forgotten to pack PJ some money, so he could get a treat at the school bake sale (being held to benefit Autism Speaks in honor of Autism Awareness Month). I rushed to school before I met my friend with 75 cents in an envelope with his name on it. I knew that if PJ saw cupcakes and couldn't get one, it would be bad news. I made my way through the rain to meet my friend for coffee, then it was back to school to read to PJ's class. That is always so much fun- the kids are so cute and funny!

I brought PJ home for lunch, and he was completely crazed  a little hyper, running around the living room in circles so fast, he was blurring. I had a pounding headache, and per usual any time I have a school meeting, my nerves were jangled, sitting right on top of my skin. I was struggling to get my notes and papers together for the meeting while PJ asked for "help me with train tracks, Mommy!". It wasn't anything too terrible, just a little overwhelming and annoying.

With PJ's train tracks built and all of my paperwork together, I logged on to MyAutismTeam.com to write a quick "vent" post ("OMG! The trains! The headache! The IEPs! The rain!") and then glanced at my Facebook feed, only to find the story of a mama and dad who will say goodbye to their five year old son tonight. Their young Gavin suffered a seizure and went into cardiac arrest, and were just waiting for the official results of testing to let them know that their son was brain dead. I quickly logged back in to MyAutismTeam.com to amend my vent post:

You know what? Everything I just said? Forget it. In a milisecond I forgot what an amazing gift it is to raise my son. I know not every moment is sunshine and rainbows, but PJ is here with me in his perfectly imperfect little blonde, cyclonic body! Please, please, send this mama your prayers and love and warrior vibes...

A friend of mine who I lovelovelove (Hi, Fred!) told me that in reading my posts this month, he's cried. That wasn't my intention at all (Plus, don't be a wuss, Fred!). This thing that we face is hard. And so, so many people face it. One in eighty-eight kids, with mamas and dads struggling to keep their children a part of this crazy, amazing, beautiful world. I don't think that any of these parents and caregivers asked for Autism. Autism is an unwelcome little interloper.


videoBut still...in the weirdest of ways, it's been a gift to us. We celebrate every small milestone. PJ was 2 1/2 before he said his first two-syllable word, and I have it on video. I watch it all the time. When he pretends to feed Thomas the Train his breakfast, Pete and I jump for joy. When PJ played ring-around-the-rosy with his friends, I cried with excitement to see him so happy and engaged. When PJ sweetly greeted his teacher, speech therapist, and occupational therapist by name, I was filled with pride. When he finally, finally drew a vertical line, a horizontal line, and a circle, I took video, then ran to the computer to e-mail his OT at CHOP, who worked so hard to try and help PJ develop this skill that seems so innocuous, and is such an important building block to help further develop his writing skills. The moments that might have been a passing flash of glee are cemented in my heart.

I don't like to compare grief and sadness. Nothing annoys me more then when people get into a Sadness Pissing Contest. "Oh, so and so had no right to be upset about that when I have gone through bla bla bla." Being sad sometimes that PJ is autistic doesn't take away from the sadness of someone going through something else. But, reading the story of sweet Gavin reminded me of all of the gifts I was given with PJ. I love my friends who have cried with me, who have shown us love and support or even a "like", I take all of it with me. But parenting is parenting is parenting. Some parents have a more liberal dose of heartache then others, but the joy...the parents who truly love to parent can find the joys under all of the heartache, and possibly celebrate it that much more.

This is my shot at parenting, and if I stay under a cloud of grief I'll miss the rainbows. 

Thursday, April 11, 2013

"I love you just the way you are..."

I originally wrote this post close to a year ago. At the time, I was writing about PJ's diagnosis in a space separate from this blog. I said it was because I wanted a space to be "snarky" and "brave" about Autism, but really, I just wasn't ready to share it on my "real" blog.

Ugh. What a pussy.

I eventually faced facts and realized that Autism is, indeed, here to stay, unwelcome little asshat that it is. That was progress, right? I felt pretty damn good about it, and then I realized that if Autism hadn't snuck in, PJ wouldn't have, either. To wish away Autism would be to wish away my kid. It's one of the many, many lessons I learn every single damn day. Thank God.

______________________________________________________________


While PJ was in his room peacefully napping alternately chatting to himself about all of the characters on Caillou and saying “Call now, call now!” (proof that, perhaps, he watches too much television), I took part in a Twitter chat hosted by USA Today on the topic of Autism. There were a number of experts in the field- physicians, researchers, advocates, etc.- who were handling tons of questions. As a whole, the chat was amazing- there were so many voices with so many useful, relevant things to say. I was especially happy to see users with Autism/Aspbergers/PDD/etc taking part. Seeing so many strong, intelligent, capable, autistic adults filled my heart- it’s everything I want for PJ as he evolves into his own person.

At one point, I saw this question scroll by:



Oh, hell, no. No, you did not just ask that.

I was restricted to the Twitter norm of 140 characters when I originally answered that question, but it annoyed me enough to want to answer it here.

My son has Autism. It is what it is. Yes, we treat it with therapy because we want our son to have every tool possible in order to access his full potential. That potential will be whatever it is- he may be president or he may live with his parents forever. PJ is funny, happy, smart, loving, and eats well enough to warm any Jewish mamas heart! He came with blonde hair, his fathers flat ass, my stubborn streak, and he came with Autism. To wish any of that away would be to wish my son away. I love every part of him because I love him.

That said, yes, I sometimes wish that Autism hadn’t happened. There are a thousand and twelve other things I would rather do with my son then send him to a special-needs preschool at such a young age or spend hours each week in therapy. I hate that there’s risks of having another child with autism. I didn’t sit under power lines, eating sushi and drinking Malibu and Diet’s while pregnant going “C’mooooooooooooon, Autism!”. I didn’t want Autism and I won’t even pretend to apologize for that.

Look, I didn’t have a full understanding of how it works until the moment PJ was in my arms. While I was pregnant, I didn’t want PJ to have any diseases or disabilities, noticeable moles, green eyes, curly hair, or an affinity for Ann Coulter. Then I met him, and even if he’d slid on out with a hardback version of Ann Coulter’s latest piece of dreck in his slimy little hand, it would not have mattered.

This post is getting rambly in my fervent hope of getting down on paper the assertion that I haven’t, don’t, woudn’t and can’t ever wish my child didn’t exist because he’s not the way I had imagined. That’s not even possible, and I resented the question, even if it did come from someone who seemed truly lovely, and posted thoughtful comments throughout the discussion. Therapy, doctors visits, Early Intervention…I’m not trying to change the intricacies of who my son is. All my husband and I want is for PJ to be the best possible version of himself, whoever that may be.

I may not have wished for Autism, but I wished with my whole heart for PJ.

Tuesday, April 9, 2013

"When the rain washes you clean, you know..."

Two weeks after after the evaluation, Pete and I went back alone to discuss the results with the team at CHOP.

I was feeling the same jumble of nervous energy that I felt before- I got dressed in cute clothes and put on makeup, fussing over my appearance as if that might change the results. And in my heart, I knew what the results were.

Pete and I chatted as we drove over the bridge into Philly. Many times, if there is something we are both anxious about we end up picking fights with each other out of stress, but this time we companionably talked as we parked and walked into the building, stopping quickly to grab drinks (Diet Coke for me, Vitamin water for Pete) from the WaWa in the same building. I had not been able to really eat for days due to a combination of horrific stomach bug and my growing nervousness about our appointment, but in that moment my whole being was crying out for a Diet Coke!

A few minutes later, we were in the same room that PJ's exam had been in except that this time, both Monica (the nurse practitioner) and Dr. L (the pediatrician) were on our side of the rooms two-way mirror. After some small talk about how they remember each of the many patients they see (PJ was "the blonde boy with the father who is an RN") we got to it.

I will never forget how Dr. L started off the conversation because it truly made me laugh out loud, even though she meant it in all sincerity.

"You son, " she said, "is a little...different". Her face changed and she spluttered "I mean, not in a bad way, of course..." but I was already cracking up. Yes, that Boy of mine? He is different!

Dr. L went on to explain that it wasn't a personality assessment, true as it might be. In most cases, they are able to determine diagnosis right after the exam- most children seem to lean profoundly towards meeting the criteria in a definitive way or not. PJ was a tougher case, and the tapes of his exam had been played for the entire team with much discussion about what was to be determined. There had been some debate but, in the end, the team agreed that the diagnosis of autism was the correct one for PJ.

Pete and I glanced at each other- we weren't surprised at all so it was not difficult to face the news in that moment. I said, "Okay. So what's next?" with a composure that surprised me.

Monica and Dr. L planned out the next few months- continuation of PJ's current therapies, the addition of speech and behavioral therapy, and an appointment with an audiologist to rule out hearing issues. I asked about how this diagnosis should/would determine our decision to have another child, and Monica said "You know, Dr. Z in our Genetics department is wonderful, and she will have better answers and guidance for you. " I was happy to hear this- we had an appointment to see her in June and although we already had some glowing reviews, it was comforting to hear them from another professional.

As we spoke, I was so thankful for the fact that this conversation was being held with such a positive tone. The diagnosis was not easy to hear, but Dr. L and Monica were able to convey to us that there was no reason to see anything but a bright, safe, future, full of all of our Boy's potential. I found myself smiling, laughing, feeling so comfortable with the plans being laid out for our son. They didn't just see autism- they saw every bit of our funny, sweet Boy and we were so grateful for that.

Pete and I were plied with the obligatory piles of autism paperwork- a large directory of service providers for the recommended therapies, fliers about lectures and support groups, pamphlets about autism research currently being done at CHOP (another top reason we went with them), etc. Monica remembered something else she wanted to give us and stepped out of the room to get it, leaving Pete and I alone in the little room (Dr. L had said her goodbyes a few minutes before to see her next patient).

Pete turned to me and said those three little words- not "Are you hungry?" or "Got any gum?" or even "I love you." He said the three little words guaranteed to make me crumple:

"Are you okay?"

AWWWWW, FOR CHRIST'S SAKE! REALLY??????

My eyes, predictably, filled with tears just in time for Monica to walk back in the room. Crap. There went my carefully constructed facade of having my shit together. Monica took one look at my teary face and knelt down next to me, taking one of my hands in hers, and earnestly assured me that although it is hard to learn that anything is "wrong" with your child, we were going to be okay. PJ showed so much potential and we were doing all of the right things by him. We were going to be okay. Her kindness was touching and much needed.

After a few more minutes of discussion, we said our goodbyes and Pete and I trudged through rush hour traffic to get back into New Jersey and back to our Boy. I just wanted to see his face.

We got in and I went straight for my baby, who was smiling now that his Mommy and Daddy were home! I held my arms out for a hug and PJ obliged, wrapping his small arms around my neck. It felt no different from a thousand hugs before, even though we had a conformation of this life-changing thing in our lives. His eyes were as bright as ever and his little body as alive. How stupid that I worried it would look different once we "knew".

Later that night, after PJ was in bed, I sat on the floor of our living room with my "autism binder" open and the paperwork we had received spread out before me. Putting paper into binders and making everything neat and organized is one of favorite activities in the whole world (ahemweirdo). When I was in school, going shopping for supplies was like panacea for my soul. But that night, as I shuffled through all of the information, the words started to swim before me. I leaned over until my forehead touched the carpet.

"Baby?", Pete asked, a note of concern in his voice. He got up and sat next to me, gently taking my face in his hands and lifting my head off the floor.

"Our baby..." I said, but couldn't say any more. Instead, I started to sob. After standing at the edge with a brave face on, I had finally gone ahead and jumped. I cried on my husbands shoulder and realized that we needed to say goodbye to the life was had though our son- our dreamed of, wished for son, the one I wanted so badly and didn't even know it, who healed our hearts with the news of his impending arrival- would have. I only knew what would be for the next few months- navigating doctors visits and therapies and blood draws and more of the waiting game- because it felt like the life I had already mapped out had been torn to shreds. I knew we had all of these plans, but what the hell was going to happen to us?

After a few minutes I got myself together and Pete and I lapsed into quiet, sitting together while I returned to organizing papers and Pete returned to watching TV. I could tell that he was thinking about everything as much as I was. But really, how much could I allow myself to cry over things? I knew there would be hard days, and sometimes there would have to be an out-and-out fight to make sure that our Boy had every tool at his disposal to meet the potential we know he has.

It's hard to believe that night was over a year ago. At the time, I had no idea about...anything. Even though we had gone into the appointment with a pretty good idea that PJ is Autistic, I know that I was holding on, so tight, to the possibility that maybe...

It wasn't what I wanted. I don't think anybody wants to know that their child will face something that might cause them any struggle, hardship, pain or sadness. But, I also thought that I didn't want to be pregnant when I became so. I had no idea at the time that PJ was everything I wanted, and if this is part of the package, it's okay.

For the first time that night, and every night since, (and for every night as long as I am PJ's mama) before I went to bed, I took a deep breath and remembered that tomorrow, there's work to be done. And there's never been a better boss in the world.

Monday, April 8, 2013

"Here's the story..."

I completely forgot to announce this yesterday {FAIL!!!} - the winners of the passes to the Liberty Science Center!!! There were very few entries (ahem, two) so I decided that everyone wins! Jenny and Shannon, I will be contacting you as soon as this is posted! Hooray for winning stuff- I know you guys will have a blast at the LSC!

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Part One:

After six months of waiting, the day arrived. January 25th, 2012, the day of PJ's evaluation with the Early Childhood Development Team at Children's Hospital of Philadelphia.

The appointment was for 9am, which meant we had to get up, fed, dressed and over the bridge into Philly during the morning rush hour. When he had his evaluation for Early Intervention, I cleaned like a psychopath. In the same manner in which I prepared for his Early Intervention eval, I cleaned. But in this case, it was us, not the apartment! I dressed PJ with my usual care (PJ has a great wardrobe!) and dressed myself as well as I could (I do not have a great wardrobe, but the fruits of some Christmas gifts served me well). I made sure my hair was straightened and my makeup was nice. Pete, us usual, looked nice in that effortless way that men have. Casual but not stuffy or anything. If first impressions were going to mean anything, I was making sure ours was a good one!

I somehow managed to go off on a fashion tangent there. Sorry for that Stacey and Clinton moment.

The office wasn't located at the main hospital but rather in a satellite office on the campus of Drexel University. The air had a collegiate feel to it, but the waiting area had the familiar feel of CHOP. We checked in and after a few minutes, we were called back. I could feel my blood pounding in my ears as we walked through the door- I had a feeling of jumping off a cliff or cresting the highest curve of a roller coaster.

We were greeted by a nurse who took PJ's vitals and then led us to an exam room. The exam was conducted by a wonderful nurse practitioner named Monica. As she interacted with PJ Dr. L, the developmental pediatrician, would observe PJ through a two-way mirror in an adjacent room. I shook each of their hands while I shook inside- my nerves were right at the surface. In my heart, I knew that it was likely that PJ was autistic, but I wanted the exam to go well just the same. I wanted Monica and Dr. L to get a glimpse of the funny, handsome, bright Boy I knew despite what might be "wrong".

Pete and I were asked to sit and PJ and Monica played. The room, though small, boasted a child-sized table and was dotted with toys and games. PJ jumped right in, examining the toys, putting together puzzles, and joined Monica in some drumming. A jar of goldfish crackers, lid on, were left out in PJ's line of vision in the hope that he would somehow request that the jar be opened. He eventually did so by bringing the jar to me and placing it in my hands.

At one point, Monica picked up a doll and held it out to PJ, who promptly selected a bottle from the jumble of toys and brought it to the dolls mouth, sending Pete and I into laughter and prompting a questioning look from Monica.

"PJ was breastfed for twenty months! I think he's had about four bottles in his lifetime- he went from the breast straight to a sippy cup! Where did he learn that?" I laughed. We chatted for a few minutes about breastfeeding before she turned her full attention back to PJ.

Pete leaned in and whispered, "At least he didn't try to nurse the doll!"

"At least he's pretending something, " I whispered back. "He can pretend he has boobs if he wants!"

Monica continued to play with PJ, take notes, and ask Pete and I questions in a seamless fashion. It did not take very long for Pete and I to feel comfortable and relaxed. PJ took to Monica beautifully and the exam was going well. I wondered what the doctor was thinking behind the mirror and felt a bit like Dorothy before she knew that Oz was just some dude.

Pete and I were surprised to learn that there was a physical exam, too. PJ's ears were checked, his stomach palpitated, his heart and lungs were given a listen. His skin was examined under a black light called a Wood's lamp to check for a  condition called tuberous sclerosis. His boy bits were looked at to make note of his hypospadias repair. Much to PJ's chagrin, his ears were studied, bringing on a mini tantrum that was quickly abated by the offer of  his paci!

Once we had PJ dressed we all settled back into our chairs. Dr. L and Monica let us know that we would need to return in two weeks to discuss the results. We had been warned about this possibility when we made the appointment- often, results could be given right away but other times, the details of the exam had to be looked at more thoroughly to determine if there would be a diagnosis. Pete and I had been hoping for a faster resolution, but were okay with returning. We tried not to speculate as to what that could mean as we headed home. And by "we tried not to speculate", we dissected every little moment of his visit and what it might mean when we came back.

Later that day, I tucked PJ into bed for a nap, read him a story and kissed his head. I whispered thanks to him for being so brave as he wrapped his arms around me for a hug. It was one of those moments where nothing mattered but my best Boy.

Later that night, I tossed in bed, unable to sleep. It was one of those moments when nothing mattered but my best Boy.

{part two tomorrow}

Saturday, April 6, 2013

"Don't talk, I will listen..."

MyAutismTeam.com is a new social networking website that allows the parents of children with an ASD to connect. Much like Facebook, people can log in to vent, joke, ask questions and offer support. Unlike Facebook, a parent can be sure that there will be someone who can relate to a story about meltdowns, IEP's, insurance woes, or marital problems. By the same token, parents can share all of the little victories and joys that to some, might seem insignificant.

Often, the parents of children with Autism can feel isolated. I spill my guts into my blog, where the writer in me wants people to read and the Mama in me wishes it had a little heart-shaped lock like my middle school diary. I have an outlet, but some parents of children with Autism do not. MyAutismTeam.com is a great way for parents to have a release and an audience they know can relate.

A few weeks ago, a parent named Mike posted the following, and he was kind enough to say "yes" when I asked if I could share it here.

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1. Autism Is Unaffordable


I'd love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour – many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then…

Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees… even in good times.

Families live on pins and needles with hopes that they’re doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.

2. Parental Guilt

So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be “recovered” and nothing, I mean nothing, makes a parent feel more guilty than thinking you could’ve “fixed” your kid but… well you didn’t or couldn’t afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word “no” appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don’t get me wrong, I am always elated for any child’s success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom’s opinion, keeping it real…

Alas, accepting my son’s progress or lack thereof is the key to moving forward with my head up.

3. Puberty Plus Autism Can Be a Volatile Mix

Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.

A dear friend of mine and autism “Superdaddy” explains puberty’s effect on autism like this: “[Puberty is] an ‘oy vey’ for a normal child but it can send hormones racing in a child with autism that they don’t know how to deal with.”

The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.

Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn’t anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let’s get that out there, please.

4. Minority Children are Diagnosed with Autism Years Later Than Other Children

There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:
if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.

That’s why the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I’ve visited black churches with this message letting them know they can be extremely helpful in this effort. We can’t allow the window for “age-appropriate, effective therapy” to close on these kids.

5. Autism Can Be Tough on A Marriage

Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family’s Journey with Autism (Hyperion).

I want to shamelessly plug my former NFL QB’s evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that… a book like this might have offered me that insight earlier on.

Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.

6. Autism’s Effect on Siblings

We don’t see too much coverage about what the siblings of autism endure.

Ruined play dates, family outings cut short due to a brother’s or sister’s public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma… the list goes on.

It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.

I’m so hopeful this will change a bit with the release of My Brother Charlie, a new children’s book co-written by my daughter and me. (We’ve been a busy family!) Told from a sister’s perspective, in My Brother Charlie Callie acknowledges that while it hasn’t always been easy for her to be Charlie’s twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn’t already such a book in children’s libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.

7. Adults Living with Autism

The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It’s my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.

Here are a few sobering facts:

•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)
•There is an 81% unemployment rate among adults with autism (CARD)
•78% of families are unfamiliar with agencies that could help them (CARD)
•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future

The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.

We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!

How glorious would it be to get more media attention on this particular issue.

And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger’s syndrome to live and thrive on his own.

8. Autism Advocates Who Actually Have Autism:

What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that…

I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I’ve had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word “cure.” Many have expressed that they feel this was their destiny, that they were born this way so stop trying to “cure me.” Whatever our views or personal agendas, we have to respect that.

Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. “Come into my world!” one 25 year old young man with Asperger’s told me passionately.

My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I’ve learned in any book! You go, Carly!

I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.

Bottom line: Their opinions should be heard, valued and included.

So here’s to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!



Friday, April 5, 2013

"Vacation, had to get away..."

F-R-I-D-A-Y!

one:


It's Spring Break for my best Boy, and he has been having the time of his life this week! We spent three days in Ocean City, Maryland, where PJ was surrounded by his doting, loving cousins! My kiddo got his first sight of the ocean from our hotel balcony and promptly began the monologue "Let's go see the ocean? Go to the ocean? PJ go see ocean?" {repeat}

Thankfully, he not only got to dip his toesies into the very friggin' cold ocean, but he saw wild horses on Assateauge, went on a nature hike in Chicoteauge, swam in the hotel pool, ate yummy ice cream at Dumser's, and watched the sun set to a musical fanfare at Fager's Island. We walked the boardwalk and even stayed up until 10:30 with the big kids! It was everything we wanted for PJ's first stay-in-a-hotel vacation.


Photo by Aunt Ann

two:

Our bathroom was redone!!! We had noticed that the floor around our toilet was a little soft (nothing like potty training a toddler to make you notice what the floor around the toilet is like!) and upon hearing that the subfloor needed to be replaced, our landlord decided to redo the whole bathroom. So now, in place of peeling linoleum and ugly walls, we have a lovely tiled floor, smooth, painted walls, new fixtures and a new sink and vanity! And now I need to go to Ikea. Obviously.

three:

I have been on a memoir kick lately. Right now, I am reading Glennon Melton's Carry On, Warrior. I had already been a fan of her blog, Momastery, and was looking forward to her collection of essays on life. I find myself reading and, between laughs, nodding my head in agreement.

four:

(Right now, PJ is gleefully playing with the Spring/Easter-theme window clings I bought for 99 cents when I was at the grocery store the other day. Winning.)

Even though yesterday was a long one- a last morning taking in the sights of OCMD and then a long drive back- I had more fun waiting for me in Philly! My sister gifted me with tickets to see Maroon 5 months ago! I was kind of old-lady-ish in my fatigue, but we still had a blast! They are fantastic live, and Adam Levine is even more hot in person! Truth.

five:

Here is today's post for my month-long Autism Awareness Month writing project. Sharing PJ's story has been an amazing blessing- the outpouring of love and support has been more then I could have ever dreamed of. We are very, very lucky, and sharing the hard things has made this even more apparent. I hope that a few people can see that PJ's diagnosis of Autism hasn't made being his mother and father any less joyful and spectacular than it would be had PJ been born "neurotypical".



She may be winging her way to Texas, but it's still Friday which means I linked up with the Joy of the south at her lovely blog, The Sowell Life! Stop by and say hi!

"Mr. Telephone Man, there's something wrong with my line..."

Waiting for the call that we had an appointment with the developmental specialist at Children’s Hospital of Philadelphia was both effortless and horrible. It wasn’t something that consumed our thoughts all the time- day-to-day things still continued to go on in the same fashion. With the exception of the start of therapy from Early Intervention, our days were very much the same. There were play dates with dear friends, outings to local fun spots, and dinners with family. Halloween came and went (PJ was Super Grover!), Thanksgiving passed, PJ’s 2nd birthday was celebrated with great joy!


Before all of that, in early October, we received a letter that all of our information and paperwork had been received by the Center for Childhood Development at CHOP- the one we'd been waiting and hoping for. The letter stated that we could expect a call in November or December to make an appointment in January or February, a full six months after we started the intake process in August. The waiting game was, officially, in full swing.

Wheeeee.

As I said, our daily life went on as usual. We had begun therapy two to three times a week for PJ (Developmental Integration, Physical and Occupational Therapy, with Speech Therapy added a few months later) and were fighting…something. Without a diagnosis, we had no idea what. What we did know was that PJ wasn’t talking and his motor skills were lacking (to say nothing of all the other "red flags" that had been hoisted at his evaluation for Early Intervention), so we steadfastly worked on improving his skills.

At the start, therapy was difficult. PJ was resistant, and he wasn’t willing or able to focus on the activities. The first six or so weeks, especially, were like physical blows to my heart. I had hoped that PJ would meet each task with ease and he just…wasn’t. He wasn’t and without the opportunity to speak to a physician who specialized in developmental disorders, we didn’t know why. Or, well, we had the excuse that we didn’t officially know why.

After about two months, PJ became used to therapy and was able to focus enough to learn from the tasks at hand. Each week saw improvements, and each week saw no calls to set up an appointment with the Developmental Pediatrician. Finally, it was a few days before Christmas, and I called the office to see if I could get a bead on where we were in line. I hoped that perhaps I could get a more solid estimate on when I could expect a call and with that news, be able to relax and enjoy the holidays.

I was hesitant to call- I could only imagine how many parents called each day, frustrated and irate by the wait. But I wanted to check in, so I called.

“Hi, my name is Brie. My son, Peter, is on the list for an appointment with your department. Our letter said we could expect a call in December, but with it being so close to the holidays I wanted to find out if perhaps we should expect it after the New Year?”

Gah. I felt like such an ass. I expected a sigh, but instead, the woman I was speaking to asked me a few questions and then put me on hold. After a few minutes, she returned to the line.

“Okay, I want you to call this person at (phone number). She will be expecting your call, I just spoke to her. She said to give her a few minutes and if you get her voicemail, she will get back to you as soon as she’s finished the project she’s working on now. If she hasn’t returned your call after an hour, you call me back and I’ll get you guys connected.”

I thank her for her help, haltingly explaining how difficult the wait had been and how even the smallest kindness meant so much.

“Oh, honey, ” she said. “You are very welcome. I’m a mother, too, and no mother should have this on her heart, especially during the holidays.”

Pete looked at my quizzically as my face crumpled. I couldn’t help myself- I started to cry. It was such a small thing but her words we filled with real, honest kindness and I felt it to the core of my little broken mama heart. I stumbled through another round of awkward thanks before ending the call. Sure enough, not twenty minutes later, we had an appointment for January 26th, 2012.

(I feel like I should add that we did not “butt” ahead of anyone in line. I asked a million times before the phone call ended because after going through that long wait ourselves there was no way I would subject another parents to one second of extra time. As it turned out, we would have received a call in the next day or so.)

Suddenly, the wait had an ending, and I continued to cry as I wrote it down in my date book. In a little over a month from the day I made that call, a wonderful nurse practitioner would interact with our son while a pediatrician would watch from behind a two-way mirror. We didn’t know it then, but we were a little over a month away from the start of a whole new lifetime for us.



Thursday, April 4, 2013

"...just like paperwork but harder to read."


AUTISM- IT’S JUST LIKE THE SAT’S!

Writing about our difficulties finding a developmental physician the other day reminded me of all of the paperwork that our autism journey has entailed so far. Environmentalists, I hate to break this to you, but it may not be cow farts or toilet paper or gas-powered vehicles that are to blame for the waning condition of our world.

It’s the ‘Tis.

The sheer amount of paperwork that surrounds us is astounding. Each doctor that we contacted sent us a health history to be filled out, and each was no less than 20 pages. We were given brochures on how to find support and pamphlets on research. There were packets that detailed our rights as the parents of a child utilizing the Early Intervention Program/school system and charts to show how much it would cost us. There were receipts for specialist visits (speech, audiology, etc.) . There’s a summary page for each therapy session (3 times a week plus one per month). I kept all of it in two large, sectioned binders that took about 9 months to outgrow. Now, everything is kept in my very large, Famous Red Binder, which was provided by CHOP to families of children with a chronic illness or disorder. The binder helps me keep the paper trail of PJ's doctor visits, therapy, IEP's, etc, organized and accessible. 

Amid all of that, there is one, single-page worksheet that will haunt me for the rest of my days.  It is only one sheet but, trust me. If you go on this autism journey you will see this sheet many, many times. It’s the M-CHAT.

The M-CHAT is the Modified Checklist for Autism In Toddlers and is a clinical screening tool to determine if a child is at risk for autism. It asks questions that, mostly, concern behavior and communication, for example “Have you ever thought your child might be deaf?” or “Does your child ever stare at nothing or wander with no purpose?” Most pediatricians will offer the M-CHAT during your child’s 12, 16, or 18 month well-check- ours offered it at all three.  Some answers may prompt a follow-up question to gain further insight into your child’s possible risk. Most children will score at least one “red flag” in the first round. Kids are just quirky like that. The follow-up questions help to separate quirk from ‘Tis.

The M-CHAT is a great tool, and it is impressive how a few key behaviors can help determine the risks for autism. The test in and of itself was fine, but holy crap. We must have filled it out eight. billion. times. Or, you know, a few less. But amid all of that paperwork, the M-CHAT was always lurking. We filled one out in our pediatricians office when we first voiced our concerns. There was an M-CHAT included in each packet we filled out. At our appointments, we filled out yet another M-CHAT with the clinicians! And let’s not even talk about how many times Pete and I would fill out the M-CHAT after PJ was in bed and we were discussing our fears and concerns!

(Yes, we filled it out often. It was oddly reassuring to go over it and say “Oh, he’s doing {insert behavior here} much less now, right?” In retrospect, I realize it was a lot like getting a splinter and going to the Googles only to get done clicking and be sure you have Ebola. Hey, I never said we had any idea what we are doing here! )

After a while, I could look at something PJ was doing and think to myself “Ah! Question 4!”. It was a little insane. Thankfully, after the first few months, the paperwork trailed off (although I imagine there will be another surge when PJ starts school in the winter).Once we chose a developmental pediatrician and our other specialists, there was only the odd paper here and there as we didn’t have any large intake packets to fill out. But the binders remain as the reminder of all of the trees that were killed by our autism diagnosis. Oh, well. He doesn’t really have any yet, but if PJ starts developing any repetitive behaviors, we’ll try to encourage one to be recycling.

Tuesday, April 2, 2013

"You see it's too much to ask for and I am not the doctor."


After PJ's evaluation for Early Intervention gave us an indication that the possibility of Autism was there, we set out to find a physician to diagnose and treat him. But, as it turns out, there are many, many children who show signs of Autism and very few pediatricians who specialize in child development.

What the hell????

Autism numbers continue to rise- according to Autism Speaks, 1 in 88 children are affected by Autism Spectrum Disorders. We live in southern New Jersey, which is five minutes from Philadelphia, an hour from Delaware, two hours from New York, three from Baltimore and a little over five from Boston. In short, we don’t exactly live in the sticks. We have a number of major metropolitan areas and some of the finest health care centers in the country at our disposal. So when it was advised that we make an appointment for an evaluation with a developmental pediatrician, it was off the The Googles I went.

I searched within a 50-75 mile radius of where we are because…well, would you want to drive with a could-be-Autistic Toddler for much more than that? Plus, if we found a facility we liked it just wasn’t feasible that we could make such a long drive for treatment. Remembering that we are five minutes from Philadelphia, I came up with a whopping FIVE facilities that offered care in Developmental Pediatrics. F-I-V-E.

I worked the phones and spoke to very, very nice administrative assistants who took my information and warned me that the wait for an initial appointment was long. Very, very long. One Philadelphia hospital sent us a packet with a lengthy questionnaire and a letter warning us of an even lengthier wait time- they weren’t accepting new patients until 2013!!!! And this was in August of 2011! A wait that long would turn me Autistic! Still, now I understood why it was so impossible to see a doctor in a normal length of time- there were too few physicians taking care of way to many 1-in-88 kids.
Sadly, all of the practitioners sent out long packets that we needed to fill out. I think I filled out theM-CHAT (a tool used in the diagnosis of Autism) at least twenty times. It was frustrating, and the continual reminders of my son’s developmental shortcomings made me sad and tired.  Pete and I made the decision that unless another facility offered a significantly shorter waiting period, we would hold out for The Children’s Hospital of Philadelphia. They are not only known worldwide for being top-notch in children’s healthcare, but they boasted one of the top Autism research centers in the country. We filled out our jillionth M-CHAT and answered our squazillionth question and mailed off yet another  stack of papers that detailed our fears for our son.

There was a postcard to let us know that our information had arrived. A few months later, there was a letter to let us know that in a few months, we could expect a call for an appointment time a few months after that.

Well, for goodness sake. If I had any idea that the wait would be like this, I would have started the process while I was still pregnant, just in case! Can you imagine that phone call?
“Yes, I am calling to make an appointment for my as-yet-unnamed fetus?…Yes, I did fill out the M-CHAT…Well, my husband and I became suspicious when we learned that we were, indeed, gestating a human child and that alone means there is a 1 in 88 chance of an ASD…Okay, great! Looking forward to speaking with you next year! Thanks for getting us on that waiting list!”
Or something like that. Either way, Pete and I had filled out every paper that needed to be filled out, and it was a waiting game. We did our best to continue with Early Intervention and to stay sane while we speculated.
Turns out, staying sane is the hardest part.

Monday, April 1, 2013

"...I understand why you can't raise your voice to say..."

Learn the SignsIt's April, and it's Autism Awareness Month!

At this time last year, we had just officially learned of PJ's diagnosis, and while the love I have for my son never wavered- not once- Autism was still a dirty work in my mouth. I wasn't ready to face it outside of the little bubble that contained PJ, Pete, and myself. Now, I know that having a child with Autism is like holding a rose with no gardening gloves. There is a risk of being stuck by a thorn, but you take it because it's worth it to hold something so beautiful.


When PJ was 16 months old, my husband and I noticed he still wasn’t speaking very much. At the time, we weren’t very concerned- he had turned over, crawled, pulled himself up, and walked a bit later then his peers. We mentioned it to his pediatrician, who was also unconcerned. Still, when he turned 18 months and still wasn’t saying any words beyond “Ma” and “Da” it was suggested that we contact our state Early Intervention Program and have an evaluation set up.


In August of 2011, we made our first call to Early Intervention. I left a message and received a call back from a very nice service coordinator a few days later- in the middle of a play date, in fact! I stole away into PJ’s room while my friend, very kindly, wrangled all of our children so I could take the call. After a brief conversation in while I answered a few basic questions, we had an appointment set up for an initial evaluation.


At the time, Autism was a the back of my mind but did not seem like a real possibility. PJ wasn’t speaking much, but he otherwise seemed so engaged in life. Still, I was nervous. There were strangers coming over who were going to look closely at my son. What if I was missing something? What if they thought we were terrible parents? I had a million ideas in my head of how we might look to strangers, so I did the only thing I could.

I cleaned our placed like a goddamned lunatic!

I am not kidding. Let me just explain right now that I am to housekeeper what Ke$ha is to decorum. Dishes pile up in our sink and laundry usually goes from back to basket to washer/dryer and reverse. Books live in haphazard piles in any spare corner. We never make the bed. But something possessed my tiny little brain and I cleaned like Martha Stewart on diet pills. Anything in view was scoured and straightened. I cleaned out our pantry. I redecorated our bathroom after a feverish trip to Ikea. I hung pictures on the walls and made sure there were yummy things in the fridge. In short, I lost. my. mind.

The day of the eval, the therapists were an hour late; a sweaty, nerve-wracking hour in which I did my best to keep my toddler from destroying all of my hard work. When they arrived, we chatted for a few minutes and then they got down to work. PJ was given puzzles to solve, blocks to build towers, objects to identify. They watched him walk and run, climb stairs and pinch Cheerio’s. They looked at our baby and told us things we never even considered. Can you see how his feet turn out? He doesn’t run the right way. Does he often not answer to his name? His play skills seem lacking for his age. He's only saying a few words? PJ wasn’t able to focus on specific tasks for an extended amount of time. Suddenly, PJ’s high energy, his love of movement, his passion for bouncing and climbing…all of the things that Pete and I thought gave PJ such sparkle were “red flags”.

Frig.

I tried to keep my calm while the therapists retired to our kitchen to enter information into their computers and find out if PJ met the requirements to be eligible for Early Intervention as dictated by the matrix. Pete and I made nervous small talk and watched PJ play…if that’s what it really was. After about 20 minutes, everything was complete and the therapists returned to the living room to let us know that yes, PJ was eligible for Early Intervention. They were not pediatricians and could not make a diagnosis, but yes, all of those “red flags” pointed to the likelihood that PJ did indeed have Autism. While he did score well in many of the categories, he struggled with communication and his fine motor skills were also cause for alarm. Pete and I were given a stack of paperwork, instructions on how to set up an eval for occupational therapy, and left to our own devices.

I tried to decompress as I flipped through the paperwork. Yes, we hadn’t expected that outcome, but the therapists were extremely positive and we knew we were doing the right thing in engaging the services of Early Intervention. PJ was only 20 months old and would be eligible for services until he was 3- we had over a year to work hard and give our boy as many advantages as possible. I was feeling good, and then I saw his scores for Communication- my sweet, smart, funny, handsome 20 month old boy scored at an 8-10 month level.

Aaaaaaand that’s where I lost my shit. Eight to ten months? How could that be? Did I somehow miss the fact that my sons communication skills just hadn’t developed? I must have, because that number shocked me all the way through.

In a matter of three hours, all of the dreams we had for our son were rewritten. Would PJ ever start to speak, or was what we thought was just a delay was actually something that had no beginning. Would our son be able to make friends? Would the sweet blonde boy who loved to be hugged drift away from us like a boat lost at sea?


We got ourselves together and headed out the door- after all of that, we had plans to meet my parents for dinner. My parents, who had no idea that any evaluations were going on or, for that matter, that there were any suspicions about PJ’s development. Sometime during his eval it had started pouring, and as the rain pounded our car, tears streamed down my face. Pete held my hand and tried to be positive and strong, the way my amazing husband always is. He is always the glue while I am falling apart, and this ride to Brio Tuscan Grille was no exception. We pulled up and, not yet ready to talk about it, I put on a brave face and ordered an Adult Beverage. A huge one. Out of character for me on a normal day, but on that rainy, unusual day- one that I still had no idea of its significance- that drink was delicious.

All of us- Pete, PJ, and myself- have come so far since that rainy August day. Things are different and yet the same. PJ still has Autism, but when I look back at that original checklist of skills I can see that he has come so, so far! While still behind his peers, PJ is speaking, socializing, learning and loving. We work hard to make sure that our baby stays present, and that he is aware of what a beautiful world there is at his feet.

There lies some of the reasons for this month-long project. This blog comes in to allow me to stay present, too. I have a terrible habit of retreating within myself when there is something wrong, and while it’s passive-aggressive at best, blogging helps keep me above water, casting out the feelings, needs, and fears that could very well sink my boat. At this time last year, PJ had only had his diagnosis for a few months, and it was still an open nerve, raw, and I wasn't ready to touch it. I was still feeling that if I didn't talk about it, maybe it wasn't happening. Yes, my son has Autism. No, it’s not what I wanted for him. But if I let myself go under I might drag my son and my marriage down with me.

We might flail, or swallow water, or nearly sink, but we keep on swimming, baby.

{************************}

This shirt. I want it.
This week, Sevenly has chosen to donate to Autism services- each purchase will put $7 towards helping a child with Autism work on communication skills. They are just under halfway to their goal of raising $120,000, and it's only Monday! And no wonder- these are freaking cute clothes! I know that I am not really someone who should be giving fashion advice, but just trust me on this one. A few items from this line would be of significant value to my paltry little closet! You should make Sevenly a part of your closet, too!

Do it. Seriously.