Serendipity

There are five stages to mourning: denial/isolation, anger, bargaining, depression, and finally, acceptance. When you get the news that your child has autism, you mourn. You mourn the life you thought you were going to have. You mourn the child you thought you were going to raise. You mourn.

Since there is very little room for denial, the first thing that happens is isolation. No matter how many friends know other friends in your situation, you just really don't want to share yourself with anyone. It's just way too painful at first. Isolation carries you through that first tidal wave of pain.

So when one of my friends said she had a friend I should talk to, I just said, "Okay," and left it at that. Several people had "friends" I should talk to. Therapists or other moms, but I just really wasn't interested. Isolation.

But then my friend forwarded an e-mail from this fellow mommy and what was written was sooo what I was feeling that I felt compelled to contact her — so I did. I e-mailed her. It's actually amazing to talk to, be with, other parents in this situation. She asked me if I had heard about the Son-Rise Program®. Serendipity.

I had been reading everything I could in the hopes of finding something I could do for Ross. It was starting to look like I would need a special degree in order to help him, and clearly that would take too long, so I was starting to feel really, really helpless. I immediately looked up Son-Rise and — voila — PARENT-RUN PROGRAM. I started to look at everything on the Son-Rise website and knew that this was what I would do to supplement whatever the school district came up with. I had no idea how much it would actually change my life, but I knew I had to go get the training. I just knew. It was serendipity...as it almost always is.

The Amazing Ross

Ross is amazing. He can say his ABC's backwards without missing a beat. He can count to 100...by 10's. He hears a song twice and he'll have it memorized. He's AMAZING. This particular story is particularly amazing though...

After I heard the words, "he has signs of Autism," I knew exactly where to start with my reading. Jenny McCarthy. I had seen her all over the media and I knew her book would be the perfect place to start. It would be easy to digest and, besides, she's the mommy. Not some therapist or doctor.

So I picked up Ross from school and we made our way to the bookstore. With or without a diagnosis of Autism, I knew this little excursion was iffy all by myself. So as soon as we got in there, I went straight to the little computer to look up where exactly I would find this book. When the book first came out it was everywhere, but it had been a while, so I knew I only had a little window of time to look for it.

Ross watched me look it up and I told him, "this is the book we are looking for." We toodled over the section and we started to look. I looked and looked and looked. No luck. I swear, I still can't figure out how they organize their books: by author, subject, title??!?!

I was starting to get antsy because I knew that Ross only had maybe two more minutes in him and then he would be off and running...so I turned around and to say something to him and he was sitting on the floor reading a book. I thought, "hmmm, that book looks familiar." I got a little closer and I took a look at what he was reading, and it was Jenny McCarthy's, Louder than Words. Ross found it!! I was laughing for days. He found the book for me, now how am I going to get him out of here!

The AMAZING Ross.

THE Diagnosis

On September 14, 2008, I finally spoke with the right person at the school district. The district website didn't make it easy to figure out and, quite frankly, had I not been in education as a profession, I might not have even known that my district would assess Ross for free.

A very nice woman named Monica was going to go observe and assess Ross at his little preschool...get this...on October 24th! Wow. And this was just going to be the "screening"... not even the real assessment. After October 24th, they had 60 working days to do that.

So October 24th came and I got my first taste of an assessment. Five million questions. We have done several more assessments and they are all the same. Question after question after question. By the time she finished with me, Ross was napping so she ended up having to come back a week or so later to do her screening. That was the day Barack Obama was elected into office. I called her that afternoon to see how it went and that is when I heard the word "autism."

It went like this, "Well, he does have some signs."

"So when you say 'signs' what exactly do you mean by that?"

"He has signs of autism. We won't know until after the official assessments. That will probably happen after Christmas."

"Okay, I just want to get this taken care of before Kindergarten." YES...I actually said that. What?!?!?

Anyway, I didn't really pay attention to the election. I got off the phone and cried a little. Autism. Man. Still not sure, though. I'll go to the book store. I'll get that Jenny McCarthy book she talked about on Oprah. No problem. NO PROBLEM. Got it handled.

And, of course, I started reading. And that's when I started to learn what autism really was and that's when I started FREAKING OUT, because I knew Ross had it. He had it. So I e-mailed Ross's pediatrician and begged him to get me an appointment with SOMEONE who could officially diagnose Ross because I couldn't wait until after Christmas.

So we ended up in the fancy shmancy Developmental Doctor's office a couple of days later. He spoke with us and observed Ross play for, maybe, 20 minutes. He gave us the official diagnosis that I had already read about: PDD-NOS. Pervasive Development Disorder - Not Otherwise Specified. Whatever. It basically means Ross has some signs of autism, but not all.

This didn't speed anything up at all. Our first official IEP with the District to determine services wasn't until January 12th. An IEP is code for Individual Educational Plan OR let us tell you what your child needs plan.

The time between THE DIAGNOSIS and the IEP was excrutiatingly painful for me. I had no idea what was best for Ross. I felt completely helpless and pretty hopeless. None of the people we talked to would really say anything about what to expect, good or bad. The only thing that they knew for sure was that Ross would be socially inept and that there really wasn't a lot we could do about that.

I literally would wake up and for just a second I thought maybe I was dreaming it all. And then, of course, I'd realize that it was real and I would cry and cry and cry. I read it would take me two to three years to be okay with Ross's diagnosis. Really??? Ugh...I can't wait to write about how it only took me three months to be "okay" with it. :)

The Worry Gene

When I was young I use to think my mom worried too much. I would think, "I'm not ever going to worry like she does!" She seemed to worry about everything, and it definitely got in the way of any fun. I was certain that I somehow missed that gene: the worry gene.

Then I got pregnant. Suddenly I learned what worrying really was. Part of it was that I couldn't stop reading. I read everything imaginable about pregnancy and babies. It was amazing to me how many things might cause me to have a miscarriage or whatever else. So I was soooo careful. No caffeine for this mom. No blue cheese...and thankfully no cleaning the kitty litter box. All of these things could clearly kill my unborn child.

Then Ross was born and the real worrying began. I was so afraid that he would stop breathing that I couldn't sleep. I wore glasses at the time (yeah lasik!) and I literally wore them to sleep so that I could easily check on him every five minutes! I was mortified of SIDS. In fact, the only way I could really get any sleep, was if my hubby (Kevin) drug the bassinet out to the living room and promised he would check on him continuously while I slept. It is as if my worry gene had been dormant and all of the hormones woke up the vicious beast.

At six months we were free and clear of SIDS so I was on to the next worry. Autism. After every shot, I watched him super closely. I watched for any signs. Ross only had one bad reaction to an immunization. He had a 103 degree fever for a few of the days afterward. But he seemed fine afterward.

I knew not to compare him to other kids, but it was hard not to. He really was so different, but he understood everything. He was so smart. He finally started talking at 18 months. See? He's just behind. He started saying sentences at about 2 1/2. See? He's just behind. He started saying "Look, Mommy!" at about 3. See? But at 3 1/2 he wasn't at all where he was suppose to be conversationally. He was academically ahead, but he still wasn't conversing. When he could recite entire books and tv shows, but he couldn't answer a yes/no question, I knew. I was still holding out for the "he's just behind" diagnosis, but, of course, that wasn't it at all. My biggest worry had actually come to light.

And of course, Ross's diagnosis brought worrying to a whole new level. I'm pretty sure once the worry gene rears its ugly head...it's there for good.

Bowling for Ross

It was not an easy decision to start fundraising for Ross's Son-Rise Program. The economic times are not the greatest, and so I do not take people letting go of their money lightly! 

But there is just nothing like the Son-Rise Program. Since we've been doing it here at home, Ross has been doing soooo well. He's giving us a TON more eye contact. He's been asking questions...the other day he answered a "why" question. He wanted the fly swatter and when I asked him, "Why?" he said with his finger on his chin, "Hmmm...because...I need to tap fly." Awesome. I've been specifically working on "why" questions in his playroom. This program has become our miracle and I don't want to do it halfway. So I'm not going to be shy about asking for help. I would always regret it if I didn't.

I intend to write much much more about the program, but I wanted to at least let everyone know we are proud to present our first fundraiser! Bowling at Strike's in Elk Grove on Sunday, May 31st. Anyone can come and eat, drink, and bowl and we'll get 20% of the proceeds. You could come at any time...we'll be there to give you a wristband and you'll be on your way to a rip roaring good time! I thought it would be a fun way to raise some funds. Oh yeah...and business owners can also pay for an advertisement on their big lane screens. 100% of that goes to us.

So thank you, in advance, if you decide to bring your family and friends for some fun on the bowling alley!

Love, Lorna

I think I need another coc......cyx

After the morning sickness subsided, my pregnancy with Ross was actually one of the best times of my life!! Guilt free eating! People taking great care to make sure I was comfortable! Baby showers that were actually for ME!!!

It was everything that happened afterward that was hard. I don't remember this at all, but when I was pushing, apparently I said, "Did you hear that?"

"Hear what?" everyone replied.

"That pop?"

"It was probably a bone," said one of the five hundred people hovering around me.

This was at 4:oo in the morning. I had been up all night and just wanted to get to a room to maybe sleep (yeah right). I ended up in this room with this lovely Mexican woman who had the Spanish music video channel blaring. There was no "amor" coming from this new mom.

She finally left and I had the room all to myself. I started to get up to go to the bathroom and YOWZA! The place where your back meets your butt had more pain than I'd ever experienced and I'd just went through labor! Uuhhh...'nother epidural please. Apparently the darn epidural wore off and Ross had broken my tailbone. Yes...you read it right. Broke my tailbone...the coccyx. I decided that as long as I just laid there I was fine so I tried not to move and I sent Ross to the nursery for the night. The next morning, though, something was undeniably wrong. I tried to tell the doctor, but got the sense that she just really didn't believe me. She said to take some ibuprofen and I would be fine. 

So I went home and my mom brought over her old lady walker thingy...you know the one old people use to get up and down from the toilet. Yeah...you know what I mean. I needed it to get out of any chair. It gave a whole new meaning to "mature" mommy.

So on Ross's 2-day doctor appointment, I told him I needed something a little stronger than ibuprofen and guess what he gave me? Vicodin! The heavens opened up and sang!! Ahhhhh! (That's me singing like angels!) Wow. That and a heating pad...oh yeah...and Aunt Janie's donut pillow got me through the worst of it.

My tailbone will still bother me sometimes...especially if I sit on any hard surfaces (bring out the LazyBoy the next time I come over.) So...I can truly say, from a place of love and acceptance, that Ross will ALWAYS be a pain in my butt.

What's not to love?

What's not to love about Autism? Truly. The endless sleepless nights. The constant fights with medical insurance companies. The really fantastic wheat free/dairy free diet! Funfilled IEP meetings! WooHoo!! I could go on and on, but I won't. The fact of the matter is, I named this blog "Loving Autism" because, well, my son has autism. Hating autism would mean hating him. Yikes. When you put it that way, it makes you re-think it.

So you're wondering why I suddenly love it? I mean not hating it is one thing, but loving it? Isn't that a bit strong?? Fortunately, due to some really nice folks I met in Massachusetts (I'll write about that in more detail another time), I really do love autism. It is becoming the biggest blessing to have ever happened to me. Bar none. Ross is who he is. He doesn't have a clue that anything is particularly different about him. He is wired a certain way and he isn't too terribly concerned how I or anybody else feels about that. It was me that had the problem.

Because of his autism, I've redefined my role as a mommy. I've put him HIGH on my list of priorities which I really wasn't truly doing before. Because of his autism, I've found a path to my own personal happiness that I didn't know existed. Because of his autism, I've opened myself up to people I never would have otherwise. It is extraordinary. It is no wonder I love autism...because I absolutely — love — him.

Loving Autism! Hello World!

Okay, so I finally found the perfect husband. We bought a house. We spent hours painting and decorating and making it ours. This was all to welcome a child someday. You know, the DREAM. That dream most women have of finishing college, finding the bomb of a career, finding the most charismatic, thoughtful husband, and then topping it all off with 2.5 beautiful children.

And when I say beautiful, I mean always smiling, always friendly children. Always dressed in the cutest outfit and certainly never fussing or crying or, God forbid, hitting me.

Well, my day FINALLY came! In February, 2005, this 36-year-old "mature" mom gave birth to beautiful Ross Alexander. Ahhh...my dream had finally really begun. My beautiful family finally begun.

All you moms out there are laughing hysterically right now because you know that pretty much right then that dream was shattered. I'm leary of any mother who says they loved their offspring instantly because...a screaming, jaundiced, collicky baby is NOT at all easy to love. Somehow you do love them, but, damn it's HARD.

And with our little Ross, it just never really became easier. He was always different than my friend's kids. Always. He didn't want to ride the rides at the little amusement parks. He hated meeting new people. He was, let's just say, a handful.

So I went the first three years of his life feeling like I'd won the opposite of the lottery. I won the "handful." So we compensated the best we could. And like idiots, we took him to birthday parties and MORE amusement parks in the hope that he would "get used to them."

I just kept thinking...I can't wait for you to talk to me. I mean really talk to me. That's all I've ever wanted. That's what I thought being a mommy was. Talking. Ross talked all the time, but he just repeated verbatum his books and favorite programs. He didn't talk to me.

So, honestly, my biggest fear was Autism. After we got past the SIDS period of infancy, I was always scared of Autism. At 31/2 I knew we needed to get him assessed so I started the process (which took a good three months - seemed like FOREVER - but actually warp speed in Autism time) but I just kept hoping that it was just that he was just "behind." You know, boys are always behind.

Turned out, that wasn't the case...Ross has Autism. So our journey began...