What's wrong with this picture?

Remember those "what's wrong" pictures that you'd find in books like Highlights where the dogs tail was a fish and the clown was wearing a business suit? I feel like I'm in one of those images right now.

As I wrote in my last entry, my firstborn, 10 year old Christian, has Asperger's Syndrome (click the link to learn more). It took me a long time to find peace with his diagnosis and thankfully, he has made incredible progress and is extremely high functioning. Christian's major deficit at this point is in the social realm. He's quirky. Okay, he can be downright weird. He makes us laugh and loves fiercely. He's a completely unique, amazing 10 year old boy.

Christian just finished 5th grade. I'm sure anybody who is over the age of 15 would tell you that between 5th-8th grade were probably some of the worst years of their lives. For me, it was 7th-9th. Kids are brutal. They're cruel. They will take anything about you that is different and tease and laugh. I've feared this time period in Christian's life for a long time.

I'm sure you're thinking, what the hell does this have to do with the clown in the business suit? Here's what it is. Right now, my son is on his way to his first "social language peer group." The goal of the class is to give Christian the skills he needs to have successful interaction with his peers.

Sounds great, right?

On the surface, sure. Christian has to learn to live in a world that is red/blue/yellow/green/purple despite the fact that his mind works in black and white. He doesn't understand nuances and sarcasm. He doesn't get joking and teasing (believe me, I know this).

So what's my problem? My kid is going to get this great opportunity and insurance will pay for it. I should be jumping for joy, right?

My issue with this is that Christian isn't the clown in the business suit. He's not the dog with the fish for a tail. At least not to me. Christian is loving, gentle, dotes on his baby sister, makes me breakfast in bed for no reason (and they are the best microwave pancakes I've ever had), he's is daddy's shadow and my little sweet boy. He wants to be friends with everybody. He doesn't have a violent or hateful bone in his body. He's smart, he follows the rules, he works hard. He LOVES. If you can't tell by now, I think my son is amazing.

Why is Christian the abnormal one in the eyes of the teachers, the principal, OUR SOCIETY? Why don't we want more kids to be like Christian instead of trying to turn Christian into one of the little hooligans who make his life a living hell at school, on the bus, on the playground, and in the classroom? Why do I have to send my son to a class to learn to interact "normally" and explain to him why he has to go? Why don't we send the bullies to a class so they can learn to be decent people and more like Christian?

It makes me so angry. On top of this, when school starts again, we have to meet with Christian's principal and teachers to see if we can put a plan into place to ensure Christian's safety before I'm willing to send him back to public school. In the last couple of months of the school year, Christian was hit in the head with an object on the bus, he was put in a headlock on the playground, he was called names and teased, he was cursed at, he was threatened several times (including one kid saying she was going to bring a knife and cut him and another kid saying he was going to kill Christian). We spent two weeks dropping him off at school instead of putting him on the bus. He was moved to the front of the bus with the younger kids while the kids his age sit in the back because the other kids weren't able to leave him alone. At one point, he did retaliate and he scratched some kid with his long nails. When the kid's mom complained to the principal, and I heard about it, the principal told me that we were "lucky" that Christian wasn't in serious trouble, but they took his "issues" into consideration. Really? I guess the kids who hit him first have even bigger issues, hmmm?

I don't expect the world to cater to my son. I don't expect him to be treated with kid gloves and coddled for his entire life. I do expect him to be able to go to school and not get abused by his peers. I do expect that the bully's will be dealt with in accordance with the school's own policies and to be held accountable for their actions. I do expect to not hear that my son is bullied because he's "weird" or that the other kids were just joking and he didn't understand.

I also expect you'll hear more from me on this subject soon.

Little Boy Lost

When Christian was a baby, he was the happiest, most social baby I'd ever met. He'd smile and coo at everybody, babbled to strangers, could get a smile from the most stoic person. There aren't many pictures of him without a huge smile on his face. When he was about a year old, he started talking and had a huge vocabulary. He was in the delivery room the night Hailey was born and we have him on video, pointing to her and saying, "What's that?"

Shortly after Hailey's birth, that all changed. My outgoing, talkative little guy because shy and reserved. It's hard to remember exactly, since I was so busy with two little ones and dealing with PPD, but some time between about 19 months and 22 months, he pretty much lost all of his speech. He became obsessed with trains and would repeat the phrase "choo choo" for hours. He got his first train set for his second birthday and he would spend hours at a time rolling the train around the track saying, "choo choo choo choo."

I knew something was wrong. It was so obvious to me. First, I talked to our parent educator through Parents as Teachers. She assured me, he's fine, you're just a worried inexperienced mom. I googled and read. I knew about Autism, but only the severe type, but I knew that speech regression was a big sign. In my research, I found that he had many signs going back to birth. I talked to our pediatrician who told me that kids regress when a new baby comes into the family and that Christian was probably traumatized because I had been sick and in the hospital for 10 days and I was a SAHM and his whole world was turned upside down. I left the pedi feeling very defeated and guilty.

I continued to research Autism and figure out what I needed to do. When he was 2 1/2, I called the county office for First Steps, Missouri's birth to 3 program. Our county was incredibly back logged so nothing had been done between January when I called and April when we moved to a neighboring county. His case was transferred to our new county and things moved a little faster. We met our incredible service coordinator, Susan, shortly after. The first time she met Christian, she talked to him, played with him, and then told me that she believed he was on the Autism spectrum. Finally, someone else was seeing what I saw, someone knew that he needed help.

Christian had evaluations and we went to a new pediatrician. Our new pedi's first recommendation was for Christian to see a neurologist. I made the appointment, which took about 5 or 6 months to get. We got his evaluation results back and his speech and fine motor skills were very delayed. He began speech and occupational therapy immediately. We also started the process to get him into our school district's special needs preschool. When we finally saw the neurologist, he diagnosed Christian with PDD-NOS (pervasive developmental disorder, not otherwise specified) but said as he got older, it might end up being Asperger's Syndrome.

At that point, nearing his 3rd birthday, Christian said very few words, mostly grunting and pointing to meet his needs. He had a very self-limited diet due to sensory issues. He spent his time lining up his trains, playing with them on his train table, and he'd become obsessed with dinosaurs. I remember very clearly the first day we went to the preschool to look around. Even though there were children his age all around, it was as if Christian didn't even see them. He went right to the dinosaur toys and was in his own little world.

Intervention was a miracle for Christian. The preschool was speech intensive, with a dedicated speech therapist in each class. He started school in September and by December, he was talking in full sentences, with a vocabulary far beyond his age. A lot of it was echolalia and he couldn't carry a conversation at all. Christian talked about what he wanted to talk about and that was it. If you tried to ask him questions, he'd talk about dinosaurs. He was a sponge that soaked up the things he heard and repeated them as needed. As preschool progressed, I began seeing glimpses of the little boy I thought I'd lost.

By the time Christian moved onto Kindergarten, "by the numbers," he no longer qualified for special services. Fortunately, by that time, advocating for my children had become second nature and I refused to sign off on a plan that didn't include support for him. We sent him to the elementary school in our district that had an "Autism room." It was the first year for the classroom in that school and things were chaotic. Christian kind of fell to the wayside. His classroom teacher didn't know anything about Autism or Aspergers. When he did well on things, the teacher would tell me about them with this sense of awe, as if she regarded Christian as having a mental disability or low intelligence. In kindergarten, we also began to encounter bullies. Kids picked on him because he was "weird" and "annoying." He was also the smallest kid in kindergarten and, with his late July birthday, one of the youngest (MO state cut off is July 31). There was a lot of conflict with the entire situation, so Eric and I made the decision to move Christian to the home school. Fortunately, the Autism room also moved to that school as well and he continued with the same teacher the next year.

Elementary school has been a battle. As Christian gets older, kids get meaner and we've had a lot of issues with bullying. We've also had to fight to get the accommodations that he needs, like more concrete instructions for projects, defined guidelines for the teachers' expectations, and things like that. He's very rule oriented and doesn't like to go against anything his teachers tell him, even simple things like considering different creative options for projects other than what the teacher suggested.

One of our biggest struggles is that people seem to think that because Christian is so smart, he doesn't need help in other areas. He has an IEP, but we fear he will lose it at some point because his evaluations and testing always come back with good results. But still, he struggles with nuances and social situations, with organization and focus. So I fight for him. I advocate, I email, I call, I complain, I yell, I'm "that mom." When I call the school, the principal probably groans outloud and says, not her again.

My goal for Christian is more than graduating high school (he will) or going to college (he will). My goal is for him to learn to live in a neuro-typical world. He can't change the world to suit himself. But, at the same time, with a newly released Autism rate of 1 in 88, our world DOES need to accept and welcome people on the spectrum. Christian can't change who he is and I don't want him to. I do want people to try to understand him a little better. I want people to understand that many of his issues are beyond his control. When he refuses to eat the meal served at a social event, he isn't being a spoiled brat or too picky. He has sensory issues which prevent him from eating certain things, he has routines that he thinks must be followed and if they're broken, he can't cope well. He doesn't perceive personal space, touch, jokes, and innuendo like others do. Christian can't change having Asperger's any more than he can change having brown eyes or being right handed. It is part of who he is--who 1 in 88 of our children are-- and he needs acceptance. They all do. They need us to work for them, advocate for them, tell our physicians and lawmakers and school teachers that the children need their help.

I'm one of the lucky ones. For the most part, I got my shining, outgoing, loving little boy back. I thank God every day for that. I am proud to be the mom of such an amazing son who just happens to have Asperger's Syndrome. I'm lucky to experience this loving, gentle, brillant child.

Never forget

Tucked away in a box of old papers and pictures is an ultrasound picture from May 2000. It isn't a baby. At least it wasn't yet. It is an ultrasound picture of two follicles I grew that month, one of which fertilized and became our first baby. I found out I was pregnant on May 27, 2000, our second wedding anniversary. It wasn't meant to be, however, and just over a week later, I miscarried. I still think of that baby so often.

Once upon a time, I was infertile and thought I would never have a baby. It's hard to remember that some times, four babies--two planned and two unplanned--later. Getting pregnant was the hard part the first time. Staying pregnant--and healthy--became the challenges in subsequent pregnancies.

When I was 20 and Eric and I had only been married for a year, we decided we wanted to have a baby. Easy enough, right? Wrong! My periods were pretty well nonexistent at that point. My gynecologist at the time told me that I should go on the pill. Uh, I want to get pregnant, not prevent it. As is my nature, I began researching and began to suspect I had Polycystic Ovarian Syndrome. The more I read about it, the more I did NOT want to have it. My boss had just gotten pregnant and told me that I should see her OB/GYN because he was also a fertility specialist. I didn't realize then the impact my first appointment with him would be.

Within five minutes of meeting me, Dr. Simckes told me that I had PCOS. He hadn't done any tests or exams. He just listened. I told him about my history of long cycles which turned into no cycles, weight gain, and other symptoms. He told me what he would see on an ultrasound--ovaries covered in a "ring of pearls" or cysts. Sure enough, a little while later when he did an ultrasound, there was the ring of pearls. I cried. I was devastated. I always wanted to be a mom and suddenly, it seemed like it might never happen. Bloodwork confirmed what Dr. Simckes already knew and we decided to take a few months to think about a course of action.

A few months later, November 1999, Eric and I were in Dr. Simckes' office and I asked him for Clomid. He told me, you need Metformin. I said, no I just want to get pregnant, give me Clomid. Got the Clomid and nothing. I didn't even ovulate. Another month of Clomid left me with a large cyst on one of my ovaries and we had to wait for it to go away. I finally agreed to start Metformin while we waited. In March 2000, the cyst was gone and I started another month of Clomid. Imagine my surprise that month when I noticed my temperature chart actually show a spike instead of a flat line. I finally ovulated. Or, at least, we suspected I had because as Dr. Simckes would say, the only way to confirm ovulation is to get pregnant. I wasn't pregnant that month, or the next. But in May, as I said above, I finally saw that second magical line on the EPT.

Six months later, I was pregnant again. I hadn't even used Clomid. I ovulated on Metformin alone. Thirty six long weeks later (full of anxiety for both Dr. Simckes and me--I'm pretty sure I drove him nuts), my beautiful boy was born. I will never forget the moment Dr. Simckes held up my first born for me to see.

Here we are now, almost ten years later. That beautiful first born son of mine turns TEN on July 19. Three little sisters, a devastating loss, and hope--ten years of parenting wrapped up in four little faces, three I see every day and one I only see in my dreams, and two tiny angels that were barely a whisper before they were gone. I will never forget the journey that brought me to where I am now. How could I? For better or for worse, this is the life I was meant to live.

Us

The easiest way to start out is with an introduction to us, I suppose. We are the Grangers, a mom and dad in our 30s who have been married forever and have a few kids. That's the quick version. But anybody who knows me, knows I'm never satisfied with the quick version. ;)

I'm Jaime, super mom extraordinaire. Or not. I'm a full-time student with a full-time job and I struggle to balance those two things with being a mom and a wife. I usually feel like there are not enough hours in the day to accomplish all that I want/need to. My kids are the most important people in my life and I am a fierce mama bear when it comes to all four of them. I learned a long time ago that I am their best/only advocate and I will fight for what is best for them. Yes, I am *that* mom. I am very passionate in my beliefs and I'm proud to call myself an extremely liberal feminist. I am pro-choice, support the rights of all people to choose their own lifestyles, extremely pro-breastfeeding, and pro-family. I'm also a Christian. I'm sure you'll hear more about all of that at some point. I had Lap Band surgery in February 2008, lost quite a bit of weight right off, but I've struggled since then. I'm currently trying to get myself back on track and lose the weight I've regained and the rest I need to lose.

Eric is my husband of 12 years. We got married when he was 20 and I was 19. Eric is a very hands-on dad and does everything I do. We're a parenting team, though he's usually the good guy and I have to be the bad guy. Daddy is just too much of a pushover for his cute kids. Eric works in retail and has the kind of schedule that allows him to see the kids off to school in the morning and get home in time to get them off the bus, do homework, cook dinner, and all that.

Christian is our first child and only son. We struggled for almost two years to conceive him and the day he was born changed my life forever. Christian is now 9. He has Asperger's Syndrome, but he is extremely high functioning and simply brilliant. His greatest aspiration is to be a paleontologist. Christian taught me how to fight for what my children need during the three years that it took for us to get a diagnosis for him. Intervention and therapy proved to be incredibly important to Christian, who went from barely saying a handful of words to talking incessantly in a matter of months when he was 3. We celebrate Christian's differences and to us, he is a quirky boy who just sees the world a little differently than most. The view from Christian's head is very colorful and refreshing.

Hailey is our first daughter and just 18 months younger than Christian. After struggling with infertility, Hailey was a surprise for us. My pregnancy with her was extremely difficult, ending with an emergency induction at 33 weeks due to severe pre-eclampsia and HELLP Syndrome. Hailey has been a fighter for her entire life, spending only 12 days in the NICU after her birth. The only lasting issue related to her prematurity has been a speech delay and mild asthma. After Hailey's pregnancy, we were advised to not have any more children, but someone else had other plans.

We found out we were very unexpectedly expecting Sydney in October 2008, the same month we finally scheduled a vasectomy for Eric. Since I was already pregnant, we decided to hold off on having that done when Eric had scheduling issues at work. I had a wonderful pregnancy right up until I ended up in the hospital with a slight bit of bleeding and found out that I was in preterm labor at only 20 weeks pregnant. Sadly, Sydney was born at 20 1/2 weeks, on February 10, 2009, and lived for two hours. Being Sydney's Mommy has changed me forever. I've struggled in every way imaginable with losing her. When I held her for the first time, I held a true piece of heaven and I knew then that she was too perfect and innocent for this world. Losing Sydney shook me to my core and caused me to question every belief I've ever held. I still struggle with guilt, anger, and unending sadness, but in the last 20 months, I've also learned how to celebrate her life and how to carry her memory with me. Sydney is as much a part of our family and a part of me as my living children.

After losing Sydney, I knew that I wanted to have another baby. I needed to fill my womb and my arms again. Nobody could ever replace Sydney, but after experiencing my pregnancy and loving her so much, I knew that I wanted to have another living child to love and raise. On August 1, 2010, at only 31 weeks gestation, our rainbow arrived. Kelsey Grace was born 9 weeks early due to severe pre-eclampsia. She spent a long 64 days in NICU and finally came home the day after her due date. Kelsey is a balm for my soul, a beautiful, perfect baby girl that I feel was handpicked by her sister to help ease our pain. I've come to realize that Sydney's and Kelsey's lives are completely intertwined. Many would say that Kelsey wouldn't be here if Sydney hadn't died, but I say Kelsey wouldn't be here if Sydney hadn't lived.

Finally, we can't forget the furry four legged member of the family, Tigger. Tigger is our 13 year old gray tabby cat. He's getting grumpy in his old age, but we all love him to pieces.