Potty Training and Special Education Preschool

When Braden turned three, it would be time to get him into preschool, but first we would have to work on POTTY TRAINING! (Dun, dun dun!) I was terrified of trying to teach a child who couldn't even talk to go potty in the toilet, but our awesome ABA therapist was with me every step of the way. We did what's called the "Potty Party", where you practically live in the bathroom for a week, but you know what—it worked! Braden loved Star Wars (thanks to Jeremy for exposing my toddler to it) and so, we did not let him watch it for several weeks until we were ready for the party. It was literally a party in the bathroom. We took the laptop and a TV tray into the bathroom and we had treats and everything. We all sat in the bathroom watching six hours of Star Wars while Braden sat on the toilet and every time he would potty in the toilet, he would get a treat. He is a very smart boy so he figured it out very quickly. Peeing in the toilet = treats! Yay! Pretty soon he was going in to pee every ten minutes, and even if it was a few drops he would get a treat. We made good progress, and I was very proud of him and of myself for having survived this terrifying milestone. He was still a long way from being potty trained at night though (and still is, unfortunately).

 Every school district is different and has different ways of doing things, so if you happen to live in a crappy district, you're basically out of luck. So, I had to do more research and asking around about the local school districts. We ended up having to move into a certain area just to get into the district we heard had the best program. This particular school district had special autism programs and classes, so we began the IEP (Individualized Education Plan) process. It is a long process and basically, you end up meeting with a team of people to decide exactly what goals you want your child to accomplish that year. (I will do a later post exclusively about IEP's, but this was our very first of many, and wasn't too painful because I had our ABA coach there with me.) Once this is all decided He begins school; I was so scared of him going to school. He was still a baby to me and he was my baby! I was so worried to leave him in the care of people I didn't really know, even if it was going to help him. The other wonderful (heavy sarcastic emphasis on the word wonderful) thing about special ED programs is that your child will go to the school that has the right program (the one you choose during your IEP) no matter how far away it is from your home. In our case the school was about 5 miles away, but they graciously offer you transportation for your child—The bus! It completely freaked me out! Here I was, imagining my three year old getting on the wrong bus and leaving me forever. I really did worry about this! I rode the bus as a child and you had to know which bus to get on and where to get off! Braden couldn't say more than ten words! How was he supposed to do this? Well, they set my mind at ease and encouraged me to let him ride the bus because they assured me that he would love it. They would come straight to our house and I would walk him out and an aid would help into the bus and into a seat (with a safety harness, thank goodness!). Once the bus arrived at school, the aid would help him off the bus and hand him off directly to the teacher or teacher's aide. This made me feel a little better, but I guess I'm just a person with trust issues because deep down, I worried that they wouldn't do what they said they would. Thankfully, in the end I was wrong. The bus worked out wonderfully and Braden really did love riding the bus. He loved it so much that on the days that I had to pick him up from school and go straight to therapy he cried—that always made me feel great. School (this particular school anyway) was a great thing for Braden. He had a great teacher and good aides that would send home daily reports on his daily activities. His speech started improving drastically! It was just amazing to watch him learn and develop new skills. I think most parents take this for granted, because it's normally such a natural process that they don't even think about it, but when you have to work that hard to get your child to say one word, it's amazing to you. We watched him go from 10 words to 30 in that year—he was making great progress. He started having a desire to interact with other kids, which he had never shown before. We were really starting to feel good about life and had more hope for Braden's life than ever. We even talked about the possibility of having another baby (I will talk more about this later), but we knew that it would be difficult to do (if possible at all) with the insurance we had not covering any fertility treatment—then Jeremy gets a job offer in North Carolina. (Cue dramatic and ominous music because things are about to get very scary!)

 

My little guy ready for his very first day of school.

Getting a Diagnosis, Then What?

I started by reading a little bit about autism, and I realized there is a LOT of information out there about treatments, theories about what causes it, diets that are supposed to help. The problem was that a lot of the information contradicted itself, so I really had no idea what to do. I read that it's very difficult to get a child diagnosed because doctors don't want to "label" young children. I finally decided to contact the speech evaluator that came out to see us when he was 14 months old. I told her that there had not been any improvement in his language; but that I suspected he might have autism (it was really difficult to say that out loud.). Fortunately, for us, she was the right person to call. She set up a referral for us to see a psychologist and have Braden evaluated. She said we would also have to have his hearing tested to be sure that his speech issues weren't hearing related, because he covered his ears a lot. We set up the hearing test first and because he couldn't talk, we had to take him to the hospital for a test to be done while he was sedated. I was terrified of him going under anesthesia. We took him for the test and they told us his hearing was fine. I already knew his hearing was more than fine because he could hear me putting on a movie from the other side of the house and he would come running; he just wouldn't answer to his name and ignored just about everything we said to him. With the hearing test out of the way, it was time to meet with the psychologist. Jeremy and I were both scared that they would tell us he had autism (even though we knew he did, it's still hard to get that diagnosis). We were equally scared that they would say that he didn't have autism but something else was wrong. We took him to the center and met with two psychologists and they basically asked us a billion questions about Braden while they observed him playing. At the end of the meeting, the doctor turned to us and said "he definitely has autism".

Your Child has Autism. Now What?

So now we knew. We just didn't know what to do next. What was the best treatment for him? We were told that every child with autism is different and no two kids would have the same symptoms, which makes treating autism pretty difficult. The psychologist recommended we apply for help from the state department of disabilities. If we qualified, we would get quite a bit of help that would be paid for by the state (We had no idea at the time what a blessing that was, because they don't have those programs everywhere.). We were told that he qualified for the early intervention program and he could get started on that right away. What a relief! To know we could be doing something for him! They said that we would qualify for speech therapy in or out of the home and they would assign an "early interventionist" to come to our home once a week to work with Braden on learning how to talk, play with toys appropriately and overall developmental goals. I thought "Great! Let's get started!" Then I found out that there was a waiting list for speech therapists and we would just have to wait. Finding a speech therapist was going to be our most difficult task. So, as I started telling people about Braden's condition, boy did I get a LOT of advice! People told me to put him on a special diet that eliminates gluten and dairy proteins from the diet. People kept telling me to advocate for Braden and be the "squeaky wheel". People told me that it was because we vaccinated him that he was like this. I didn't believe that for a second. I heard a lot about the theory that the MMR vaccination that babies get when they are 18 months old causes autism. First of all, now that I knew what the signs were, I realized that Braden was showing signs of autism from as early as 5 months old; long before getting those vaccinations—I just didn't believe that line. The more I learned about autism, the more I actually got frustrated every time I heard that theory and almost every time I would tell someone that Braden had autism, their next question would be about vaccinations. It just didn't fit with the current studies that were out. There was basically only one study done that showed the vaccinations were linked to autism. Now, it comes out that the doctor who did that study, completely falsified his research! What kind of idiot would do that!? There are families out there now who won't vaccinate their kids because of this man's lies. I can understand why the parents of children with autism need something to blame because your life gets turned upside down and you just want to know WHY?! The truth is, they haven't found the cause yet. They may NEVER find it. God sent this child to your home (just the way they are) for a reason, probably a lot of reasons. Those innocent little spirits are perfect just the way they are, even if their body isn't perfect. You as a parent are meant to learn from them—IT DOES NOT MATTER WHY—you just have to take the diagnosis and worry more about how to help your child reach their optimum potential in this lifetime, because in the next, you will get to see them in their gloriously perfect state. On those days that you're frustrated (there will be a lot of them) and you just don't understand, you have to remember that.

After many frustrating experiences with flaky speech therapists, I thought I might have better luck just taking him to a center for therapy than having someone come to the house. We ended up finding him an occupational therapist and a speech therapist through the same center. The occupational therapist actually didn't even know much about autism, so it was a bit frustrating working with someone who didn’t really understand Braden at all. Eventually she just gave up and transferred us to a different occupational therapist that was certified in sensory disorders. What a difference it made! She was so great and Braden's sessions became so much more effective! So, we had someone coming to the house once a week, and Braden going to speech and occupational therapy once a week—It was a start.

I continued doing my research and found that ABA (Applied Behavioral Analysis) had shown the most promising results across the board for autism treatment. The problem? ABA is extremely expensive and if you do have the money for it, to get the most out of it, it has to be at least 30 hours a week. We didn't have the money for that, so we kept up with what we had. It took a while, but Braden seemed to be making some progress. His first word was "ball". It was amazing to me how much work went into getting that one word out of him. It was so much work just to teach him ONE thing. I thought, "will it be this hard forever?"

We tried several different ways of getting Braden to communicate his needs because many of his tantrums were because he was frustrated with not being able to tell us what he wanted. We started using pictures of some of his favorite things; Sippy cup, toys, movies, food, and we threw in diapers so he could tell us if he needed to be changed. We taught him to grab the picture of what he wanted and things seemed to get better for him and for us. It was so nice to feel like we were moving forward, even though it was at a snail's pace. I would look at other kids his age and there was such an obvious difference in the developmental levels, it just made me sad sometimes. I wondered if he would ever learn to really talk, or be like other kids his age.

Braden was about 2 years old and we decided to apply for a program called "long term care" through the department of disabilities. It was a long process and involved a lot of paperwork, more evaluations and if he qualified, we would receive even more services, like habilitation and respite care. There was also a program called the "hab-m hab-b" program that would allow us to do some ABA therapy with someone who had a bachelor's or master's degree in ABA. I prayed so hard that he would qualify because I was told by many people that getting long term care was a long shot for someone Braden's age. Amazingly, he qualified! We immediately started looking for a habilitator to come to the home and work with Braden. What is a habilitator you ask? These people are supposed to help him learn how to take care of himself and do day to day things and work on any goals we had for him. We qualified for up to 30 hours a week. I started interviewing people and hired two different girls to come. One of them ended up being a disaster and we let her go after two weeks because Braden just hated her! I got sick of hearing him cry for the entire three hours she was there each day. The other girl was so great with him we decided to just increase her time with him and only have the one girl coming. It was one of the BEST decisions I have ever made! She was wonderful with him and I can't tell you how much I miss having her help.

We began our Hab-m program with an organization called SARRC (Southwest Autism Research and Resource Center). I had taken a couple of free classes with them when we first found out that Braden was autistic, and they were awesome! Our behavioral analyst came out to the house once or twice a week to work with me and to work with our habilitator and teach us how to work with Braden. This was exactly what I was looking for! I wanted someone who would teach ME so I could help Braden myself when these services might not be available to us (which now they aren't). She was amazing and we started seeing huge improvements in Braden's language. The basic concept that we used to get Braden to talk was to figure out what he wanted, and then get control of whatever it was and model the word for him and wait for him to say it before he could get what he wanted. There were many tantrums at first because he was used to us just giving things to him. But he learned quickly that we weren't going to give in so he actually started using words!! It was amazing to see him learning to talk! So we learned a whole new way to interact with Braden. It was so great because I had never been able to figure out how to get him to interact with me. As a mother that hurt the most; feeling like my own son didn't want to be with me or play with me. Even though I understood in my mind that his mind was in its own world (one that didn't really include me) it still stung my heart every time he I would try to play with him and he would either get upset or walk away from me. There were (and still are) times like that for me, because a mother's heart never changes, no matter what I learn. I love my sweet Braden, and I'm grateful he was sent to us; I'm even more grateful for the blessings of services and the "long shots" that we qualified for, because without them, I have no doubt that Braden wouldn't be as high functioning as he is today.     

 

 

This is one of my all-time favorite pictures of Braden (taken by Jeremy). You can see straight through those innocent eyes and right to his sweet soul.

Welcome to Holland...(AKA: Autismland)

I was pretty much at the end of my rope and ready to give up and say, "Look, I'm just not good at being a mother and I don't know what I'm doing!" I felt helpless and horrible and I hated myself for failing Braden when it was my responsibility as a mother to teach him. Jeremy and I considered that Braden might have some kind of disability, but we had no clue what it could be. We talked to the pediatrician at his 18-month check-up and asked, "Could he possibly have autism?" The doctor assured us though, that he didn't and I was so relieved I almost cried.

Braden continued to have problems though and I continued to be frustrated and angry with myself because I didn't know how to help him. Here I had the sweetest, cutest most adorable boy I could possibly imagine and I couldn't reach him. I felt like he had no idea who I was or that I was even his mother. He seemed to like me just as much as a stranger in the mall. 

 One day, my brother in law comes to me and says, "Hey, did you see the latest Oprah show? It was all about autism and they talked about some things that Braden does sometimes." They talked about turning cars and trucks upside down and just playing with the wheels rather than driving them around. They talked about sensitivity to loud noises, and the tantrums. I just thought "no, the doctor said it wasn't autism. It can't be." But my brain wouldn't let the thought go. It gnawed at me and wouldn't stop so I decided to put it to rest. I knew that if I just "googled" autism I would probably get a billion hits and each one would probably have a different take on it. So I tried the CDC website and looked up autism to see what they had to say about it. They had a list of signs to look for that might indicate your child has autism—I went through the list.

Red Flag behaviors that someone with autism might have:

1. Not respond to their name by 12 months of age (check! Braden still didn't respond when we called his name. It was a lot like talking to a wall most of the time.)

2. Not point at objects or show interest (point at an airplane flying overhead) by 14 months (Check! Braden never shared interest with us and never pointed at things)

3. Not play pretend games by 18 months (Check! We could barely get him to play with us at all. He was basically only interested in his cars and how they worked.)

4. Avoid eye contact and want to be alone (Check!)

5. Have trouble understanding other people's feelings or talking about their own feelings (Check!)

6. Have delayed speech and language skills (Double check! Braden still wasn't talking at this point)

7. Repeat words or phrases over and over (echolalia)

8. Give unrelated answers to questions

9. Get upset by minor changes (check! Braden would get so upset by someone just opening or closing a door! I would definitely put that under this category)

10. Have obsessive interests (Check! Only wanted to play with things with wheels, and only wanted to play with the wheels themselves)

11. Flap hands, rock body or spin in circles (we really didn't see any of this behavior except that when he was upset he would sometimes flap his hands)

12. Have unusual reactions to the way things sound, smell, taste, look or feel. (Check! He was very sensitive to sounds, covered his ears a lot, and would only watch certain types of cartoons. He also wouldn't eat mashed potatoes, and still doesn't)

 As I went through this list and realized that Braden fit 10 out of the 12 red flags I just knew that this was the answer to the questions I had been asking myself for months. "Why is Braden like this?" "What have I done wrong?" I had been praying hard for an answer and here it was in front of me. I had another one of those rare moments when God talks directly to you—like I had when Jeremy asked me to marry him, I knew it was the answer, but it was not the one I wanted. I wanted Braden to be fine, and just be going through some strange phase that he would just grow out of, but at the same time, I was relieved. I realized that I had not done anything wrong to make him this way. I wasn't a complete failure after all!

Then the reality of it all started to sink in. I had no idea what to do next. I didn't really know anything about autism and I certainly didn't feel qualified to teach a child with autism. I didn't know who to call to get a diagnosis or who to call to get help. I sat at that desk and watched all my dreams of Braden going to college, going on a mission, getting married and having children disappear. There was no way to know what his life would be like now. I knew he was a very smart and very special boy, so I had hope, but it was devastating all the same. I had to let go of that dream and I really didn't want to. I had to sit and contemplate the idea that my child may never talk at all. He might never call me "mom" or Jeremy "dad". That he would be misunderstood and judged by people who didn't know he had a disability. That he would probably be made fun of because kids can just be mean sometimes. So, I felt relief and devastation and I was so completely overwhelmed by the thought of the future and what would happen to my sweet little boy. I knew our lives were changing again. This wasn't what I had PLANNED for him, or for us.

One of my massage clients who had a child with special needs told me a story the night that I told her that Braden was probably autistic that I want to share. Someone else wrote it, so I am not taking credit for her work, but I do want to share it because it is a perfect way to explain what I was feeling.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Motherhood and Developmental Expectations

Being a new mom is very overwhelming. You're getting zero sleep, you have an entire little person depending on you day and night for their every need. For a first time mom, as I was, it was the most amazing thing I had done in my life thus far and even though it was hard, I was enjoying every minute of it, because I was just so grateful to have a baby at all. There isn't really anything that can prepare you for the emotional rollercoaster that you will go through with having your first baby, but I had struggled so much up to that point that I was definitely on an emotional "high" for a long time.

Braden was a very good baby. He started sleeping through the night at two months old and he thrived on our daily routines and let me tell you, he had a smile that could melt anyone's heart! He would smile at everyone, strangers included. He had big blue eyes, and chubby little cheeks and was seriously the cutest baby I had ever seen (and I'm not just saying that because I'm his mother, he really was the cutest baby!). He was a fast growing boy and by his four month  appointment, he already weighed 19 pounds! I was loving being able to stay at home with him for those first few months, but eventually I had to get a part time job as a massage therapist in the evenings, but it worked out okay for us and we were really enjoying being parents.

Now, developmental expectations, ah, what is normal? If anyone can give me an answer to that question, good for you, because I still don't know what that word really means. I was a first time mother, so how did I know if my baby was reaching his developmental milestones? I started with a really thick book, written by a bunch of pediatricians. I was also getting information from our own pediatrician at each check-up, but I watched other babies that were Braden's age as well. I talked to other moms and it seemed like every baby did things at different times. How would I know if Braden was "on schedule"? I constantly worried about it because it always seemed to me that Braden was running behind, but everyone told me not to worry to much about it and boys tended to take their time. He was hitting his milestones; he just seemed to hit them on the late end of the "expectations spectrum". He was a quirky little guy, and seemed to be sensitive to loud noises, and especially hated when people sang the "happy birthday" song. He would cover his ears and just cry—every time. He was about 14 or 15 months old and had barely started walking, but my biggest concern was that he had not said any words yet—no "mama" or "dada" or "baba" or anything, he made babbling noises but never made words. It worried me, so I brought up my concern with the pediatrician. Let me tell you how much I loved our pediatrician, he didn't just blow off my concern, he said that if I was worried, there was an early intervention program through the State that would do a free speech evaluation and if there was a delay, he would get free speech therapy. He gave me the information to call and I did. Two very nice ladies came to our home and played with Braden for a little bit and asked me several questions (little did I know this was the VERY FIRST evaluation of many, many more that I would have to go through eventually, and still do.) At the end of our evaluation, they told me that Braden had a slight delay (about 25%) though I have no idea how they calculate a delay with a percentage. They told me that in order to qualify for the early intervention program he needed to have a 50% delay, so I thought what they were giving me was good news. He was a little behind, but I was sure he would catch up. They told me that if he had made no improvements by the time he reached 18 months, to call them again and they would be happy to reevaluate. It was good news that he didn't qualify, right?

PLAYTIME: Braden was a very content little kid when it came to playtime. His favorite movie was "Cars" and his favorite toys were cars. He loved anything that had wheels on it. Pretty normal for a boy, right? He was also very happy to play by himself and didn't seem all that interested in playing with me. I would sit down to play with him and he would "tolerate" me (for lack of a better word) for a few minutes and then he would simply walk away (or crawl) and go back to doing his own thing. I asked a friend of mine who had a baby boy only 9 months older than Braden, and she said she never got a minute alone because her little guy was always pestering her to play with him. I should feel fortunate to have time to myself, right? That's not exactly how it felt to me. I had been so excited to become a mom and play with my baby that it stung a little every time he would walk away, or didn't let me read a story to him. I began to wonder if there was something that I was doing wrong as a mom.

I never stopped to worry about how he was playing with his toys either. I wasn't aware there was such a thing called "appropriate play". He was a little boy, he liked cars, what more did I need to worry about? He was a very smart and curious baby, he would inspect every inch of every car, and he would flip it over and play with the wheels to see how everything worked. We watched this and thought "Wow, he's definitely going to grow up to be a mechanic or engineer." He would line up all of his little matchbox cars and inspect each one, and heaven help the person who put them out of order. He certainly knew how he wanted things. He was also apparently the only 14 month old who would sit and watch an entire movie from start to finish (according to my other mom friends) but he seemed to prefer the pixar type animated movies as opposed to those wonderful old disney movies that I loved as a child. He also made it clear that he wanted to watch the ENTIRE movie, including the credits (all of them). We had to make sure not to start a movie right before bedtime, because there would be a tantrum if he couldn't finish it. It was just another quirky thing about Braden.

TANTRUMS: Every baby has tantrums and I never expected that my baby would be tantrum free, but what was odd to me was the things that made my baby have a tantrum. Someone opening and closing a door for instance, it didn't matter whether it was the front door, the gate, or the bathroom door (even the refrigerator door). It didn't matter if they were coming or going, if they opened and closed the door, he threw a tantrum about it. They seemed like pretty long (sometimes up to an hour), nasty tantrums for something so silly as someone opening a door. I began to dread company, and I tried to make sure he was in a different room when Daddy came home from work. His tantrums began to increase in number and became more intense. He began banging his head on anything he could find, the wall, the floor and we worried that he would seriously hurt himself, so we ended up having to hold him in our lap and restrain him until the tantrum was over (after an hour, both of us were exhausted). I was really beginning to doubt my mothering abilities, because Braden seemed frustrated all the time, he still wasn't talking (which would frustrate anyone) and he seemed to only need me for his basic needs. I loved him so, so much and wanted to play with him and bond with him, but he didn't seem to have that same desire. It hurt, and I took it personally, and I felt like I was failing him as a mother in some way.

QUIRKY BABY?: Other than the things I've already talked about, Braden had other "quirks" that made him seem different than his peers. He didn't like to be held, unless you were spinning him around or doing something rough (except throwing him in the air, he didn't like that). He didn't look anyone in the eyes for very long, especially if you were close to him. He would look anywhere but at your face. He would drag us to whatever he wanted and put our hand on it if he wanted something, like a movie, or food. He would drag me to the TV and put my finger on the power button. He would drag me to the fridge and put my hand on the fridge to let me know he was hungry or thirsty (it was a lot of guessing on my part) He wasn't pointing to anything. I was trying to do everything that other moms did and I talked to him and tried to read to him a lot. He just never seemed to want to interact with me very much. I wondered that he didn’t seem afraid of anything he would have walked right in front of a moving car or touched an open flame, though we had tried to show him he could be hurt by those things. He never showed any sign of separation anxiety, which made me feel sad in a way, like he didn’t need me or love me enough to care when I wasn’t around. I was so lost in a sea of despair and feeling like a complete failure as a mother, but I had no idea how to fix whatever I was doing wrong.

I began to think that maybe I really wasn't meant to be a mom after all—and that broke my heart more than anything.

(See what I mean? He was the cutest little guy EVER!)

Our Miracle Baby

We are FINALLY Having a Baby!

As soon as we found out we were finally pregnant (and it was confirmed by blood tests and ultrasounds). I began planning. I didn't know what sex the baby would be (it could have been an alien and I would have been happy!), we were still in the early stages of our pregnancy, so there was still a risk of miscarriage, which scared me—a lot. There are many women out there who have miscarriages, and I think there are a lot of people who don't seem to understand what kind of loss that really is. I have a good friend who has struggled through infertility and lost babies in that struggle. I once heard a woman (of all people) say, "at least it was early on in the pregnancy" about someone who had a miscarriage. I wanted to slap her (and I had not seriously considered slapping anyone that badly since junior high). It DOES NOT matter if you are 4 weeks or 40 weeks, losing a baby is a devastating loss. For my friends that have lost their babies my heart breaks for them, because that is something they will never forget. I had seen my friends go through it and I truly feared it, because the risks were high for me. I don't know about other women out there, but being pregnant required a lot of faith from me. I had to trust God to get both me and my hopes and dreams that I carried in my womb through it. The most unnerving thing about my pregnancy was that I had hardly any symptoms at all. Despite the doctor telling me at EVERY appointment that I should count myself lucky, I wanted that reassurance that I was STILL pregnant (If that meant I had to throw up every day, I would have gladly done it—and throwing up is the thing that I hate the most!). I had no symptoms, though, besides having to wake up to pee in the wee hours of the morning every day, but that was also a side effect of those lovely hormone suppositories that I had to take until I was 12 weeks along.

We were so excited we went straight out and bought an outfit for a girl because we were both convinced that we would have a girl, mostly because what we wanted was a boy and that's just how our life seemed to go. So, I was planning what life would be like with a baby. When we found out that we were going to have a boy, we were both so excited! We couldn't wait for him to come and were looking forward to all those little boy moments and how he would grow up, go on a mission, go to college, get married and have a family of his own. I was looking forward to all of it. It was going to be so fun, and we would finally fit into the world we wanted to because we would be like all the other couples around us who had babies. I would play cars with him and we would do crafts together, I was looking forward to sharing that bond with him between a mother and her child, and hearing him say "mama" for the first time.

The day finally came for us to have our baby boy (March 1st). What an experience that was! Wow! I was called in around midnight to be induced and the labor and delivery were "textbook" according to the doctor. The trouble began AFTER the birth. The hospital where we chose to have our baby was supposed to have these new rooms where you did everything—no switching rooms. HA! about an hour after giving birth I was trying to figure out the whole breastfeeding thing and was working with a woman who was more suited to being a drill sergeant than a lactation consultant and in the middle of all this, some random hospital worker comes in and just takes my bags! I say "Hey! what's going on?" and he says, "Oh, you're being moved." then leaves with my stuff. I was mad. My post-partum experience was not the greatest. I had one great nurse during the day shift who actually cared, and she was the one that caught the fact that our little Braden had jaundice. She ordered some tests and confirmed it. He would have to stay an extra day or two wearing some baby sunglasses while under some "bili-lights".

We finally brought home our sweet little Braden and he was our miracle baby.

Wedded Bliss and Other Stuff

 (Super long post, but what do you expect when you're trying to fit 7 years worth of your life into one post.)

The day Jeremy and I got married, was one of the most amazing and happiest moments of my life. I knew he was the right man for me, though. I had prayed about it, and had one of those rare moments when you actually feel like God is talking back to you. I asked God "Should I marry this man?" and I immediately felt like my heart was going to explode (I was not having a heart attack). I was being told that this was absolutely the right man for me to marry. The crazy part is, we had only known each other for exactly three months, and I wasn't even eighteen yet (close, but not for a few months). It was a huge commitment to make, but I trusted God to know what was right for me, and he was definitely telling me "Marry Jeremy!" as clearly, as if he had hit me with a bolt of lightning. There were skeptics out there though that thought, "She's too young! She doesn't know what she wants out of life yet." I knew EXACTLY what I wanted my life to be. I had it ALL planned out. We would get married and start having babies right away, I would be a stay-at-home mommy, and everything would be perfect! God told me to marry the right man, but he did not tell me I would have all those other things.

Whatever idiot came up with the idea that the first year of marriage is the best, or the "newlywed" phase was so great—should be shot. That first year of marriage is when you are learning all the things about your spouse that they worked so hard to hide during your courtship. They are also learning the same things about you. In my religion, we don't believe in living together before marriage. I still hold firm to that belief. Our first year of marriage was filled with all kinds of excitement, frustration, fun, confusion, some sadness, and a whole mess of other stuff. The point is, I don't believe it was the best year of our marriage. We have had much better years than that one since then, despite some of our difficulties.  

About three months after we got married, I missed my period…I know you're thinking 'Wow! A baby already?' You're wrong. That's when the first of God's life lessons began for me. No period. I thought OMG! I might be pregnant! Tests are negative, but still no period. Well, I have just gone through getting married and had a major lifestyle change so I figured stress could be to blame. Then came the weight gain, rapid weight gain. I know exactly how much I weighed when I got married (Every woman does) I weighed 118 pounds. I was petite and thin. I had never been fat in my life, but suddenly my body was ballooning and within months I had gained probably 30 pounds, but that's not where it stopped. By the time we had our first anniversary, I weighed close to 180 pounds. I was very depressed about how my body had changed. We both wanted to have a baby and there were people all around us having babies.

As soon as we hit that one year mark, though, we began to get the inevitable, yet well intended question at family gatherings "So, when are you two going to start having kids?" or "Give me some grandkids!" I didn't really want to admit that I was essentially defective, though it was pretty obvious to everyone that I had put on a ton of weight. They just didn't realize (and neither did I) that it didn't have anything to do with my diet (which had not changed too much). So, whenever I would get one of those inevitable questions, I would smile and say "Oh, I don't know. We're not ready for that just yet." or some other excuse. It didn't matter. The point is I wanted a baby, but couldn't have one. I knew something was wrong with me, but didn't know what. I was frustrated, depressed, angry, envious and life wasn't going the way I had PLANNED it.

When we hit that three year mark, it became obvious to everyone that we had fertility issues, but the topic was taboo. I didn't want to talk about it and people didn't want to bring it up. I was seriously angry at God because I couldn't understand why on earth he would put me through all this crap! I watched relatives and friends having baby after baby. I dreaded going to baby showers and I didn't even really want to go to family gatherings anymore because it was just too hard to see all the babies and happy families everywhere. The same thing happened at Church. I belong to a very family oriented church where it's perfectly normal to have ten children, and every Sunday lesson had to do with how to teach your children about God (or so it seemed to me). I stopped going to church, because I just couldn't sit there staring at every other mother in the building with a baby in her arms. Don't even get me started on Mother's Day. That is the absolute worst day of the year! Yes, I believe we should celebrate our mothers and thank them for all the sacrifices that they made (and still make) for us, but for a woman who doesn't have children and wants one so badly it breaks her heart every day of the year, Mother's Day is like "D-Day". You have to gear yourself up for it and try to survive it (And definitely NOT attend church that day!)

This blog isn't really about my struggles with infertility, but I can't leave all of that part out of our story (I could probably start a whole other blog, just about that if I wanted to.). It changed the way I think, and my relationship with God, and my understanding of his plan for me. It took me a very long time to realize that I don't really get to plan out every detail of my life. Sure, I make choices every day, and I'm definitely responsible for those choices, but there are a lot of things that you cannot control in your life and God is the one who is trying to teach you about life and the universe. Like that whole saying "You can lead a horse to water, but you can't make it drink." I'm the horse. I'm stubborn. I'm a control freak (or I used to be. I still have my days) and when life wasn't happening according to MY plans, I couldn't understand what the heck was going on. It takes a feat of impossible inner strength to let go of YOUR plan and allow God to do his work. After almost 7 YEARS of struggling, I finally accepted that God just might not want me to be a mother after all, and I would have to find some other purpose in life. I finally let it go. My dream of being a mother, having a family and even who I would be in this life on earth was gone.

Jeremy and I decided to give the fertility doctor one last chance, though. I had been told that I needed to have surgery on my ovaries in order to give us about a 9 month window to get pregnant. It wasn't a permanent fix, there wasn't even a guarantee that it would work at all, and we were told that it probably wouldn't be covered by our insurance either. (Yippee). I was getting ready to graduate from Massage Therapy School (I decided that, that was what I would be if I couldn't be a mom). We talked to the doctor and said we wanted to do the surgery. (Even if we had to make payments for ten years.) I had the surgery done and we geared ourselves up for the inevitable ups and downs of each monthly cycle. There is never a month so long, as the one in which you have to count every day, only to find out at the end of it that you have to start all over again. Most people won't really understand what I mean by that, but those of you out there who have struggled with infertility…you know EXACTLY what I mean. After my surgery Jeremy and I tried for a couple of months to do things "All Natural", but it wasn't working, so we went back to the doctor and decided to do a round of drugs. Here's how it went:

Cycle Day 1-7 take mystery pills.

Cycle Day 10 come in and have an ultrasound of your ovaries to see if said mystery pills are working. if they are YAY! If not. You're pretty much either screwed for that cycle or wait a few more days and come back in to see if there are any changes. Fortunately in our case the pills seemed to be doing their job. We had eggs! (Not babies, just eggs) So, onto the next step.

Cycle Day12 or 14: Depending on what the doctor learned from the ultrasound, they will tell you which day (and even what time) you get to give yourself a shot in the butt or thigh. Then have sex about 12 hours after the shot, and again 24 hours after that—if you really feel like it, you can try again 24 hours after that. It's not exactly a romantic process, but when you're desperate to have a baby…what else can you do. 

Cycle Day 14-28: WAITING…you get to use these wonderful suppositories filled with a hormone that makes you feel pregnant, when you aren't pregnant. You get to wake up to pee in the middle of the night, you get to have sore boobs, and you're extremely emotional (but that problem exists even BEFORE you start the hormone treatment, so you can see how long a month can be for a woman going through this process.) You spend every day trying to decipher every little thing you feel in your body, to see if it's "telling you something". It's psychological torture for 14 days.

Day 28: Aaaah. Testing day. You're both dreading and looking forward to this day. It's truly terrifying. Well, I had followed all of my instructions down to the letter and on testing day I got up first thing in the morning to take my test—NEGATIVE. I spent the next hour crying and realizing I had to call the nurse and tell them it didn't work, so I could go pick up my packet of drugs for the next cycle.

Day 30: Still waiting for my period so that I can start my new round of mystery pills. I'm sitting in my car at a stop light (crying), and I suddenly decide to have a conversation with God about what I'm doing. I tell him that I'm done with the fertility stuff and I finally get the point. I'm not going to be a mom, and I told him that I would be ok with that eventually (or I would try to anyway). I told him that I understand I've been given a defective body to live in while I'm here on earth, and I would try to be ok with that too, but that I couldn't put myself through this anymore.

Day 35: July 4th 2005, Still no period. I'm lying in bed wondering what else could possibly be wrong with my body. It's early, probably 5:00am but because of those wonderful hormones, I have to pee, so I go into the bathroom but something inside the back of my brain nags me and tells me to take another test. I tell my brain "You're an idiot! You already took a test! You're just going to hurt yourself taking another test! Don't be stupid!" My brain responds with, "But what if?.." I'm beaten. I get out a test (which by now I've bought in bulk, but this is my LAST ONE) and I pee on it and set it on the side of the tub, but I absolutely REFUSE to watch it! I sit on the bathroom floor staring at the toilet for the entire three-minute waiting period (which feels like an eternity). I spend those three minutes telling my brain that it sucks and I hate it for making me do this to myself. Finally, after the three-minute eternity is over, I go over to the tub to look at the test. What the.... Positive? That can't be right! I check the packaging to make absolutely SURE that I'm not reading it wrong (even though I knew exactly how to read it) It's right. POSITIVE!!! I sit back down on the bathroom floor in complete shock, tears streaming down my face, and I just say aloud "Thank you God, but if I have a miscarriage after this, we're going to have a serious chat when I die!" Chances of having a miscarriage with my condition (PCOS) are higher, but right then, in the bathroom (after my conversation with God), I let go and allowed myself to get excited. REALLY EXCITED!!!  I ran out of the bathroom crying and screaming "JEREMY! JEREMY! JEREMY!" He's just been woken from a dead sleep and thinks the house must be on fire, but he wakes to see his hysterical wife waving some white stick 5 inches from his face, and he doesn't get it. (I don't blame him either. I was totally out of control). When I finally got out the words, "I'M PREGNANT!" He hopped on board the excitement train right away! We were both still a little skeptical though and decided to take a few more tests that day (4 to be exact). It was a holiday so the doctor's office was closed. and we were going to my mother's house for a family gathering. We stopped at the drug store, and picked up more tests and hid them in my purse, and every time I went to the bathroom, I would take another test. They all came out positive. It was REALLY difficult to contain my emotions that day, but I didn't want to tell anyone until I had it confirmed by the doctor. When Monday rolled around, I took my break at work in the conference room and I called my doctor, and when the receptionist answered, I said, "I'm pregnant! What do I do!" She chuckled and told me to come in for a blood test.

A miracle had happened! We were FINALLY going to have a baby! What did I do? I began planning… (Silly, silly me. I had STILL not learned my lesson.)

The Beginning of our Story...

Once upon a time…

Just kidding! I'm not going to tell the story of how I met Jeremy like it's a fairytale. That's not how the real world works, but our story does have a beginning, as all stories do. One of the best gifts I have ever been given in my life is a journal that my mother gave to me for my thirteenth birthday. I began journaling then, and haven't really stopped since then. As a teen, I wrote almost every night, dumping my head full of random teenage dealings onto paper. Most of what I recorded as an early teen was basically my day to day goings on with a few hurt feelings and pity parties, and the occasional deep thought. The wonderful thing about journaling though, is that you can go and look back at your life, and see how far you have come. It reminds you of fun memories, crappy memories and your own life in general as it played out. So it's thanks to that habit that I happen to have a pretty accurate account of the day I met Jeremy for the first time. He was only one sentence in a journal entry, but that is basically how every relationship starts. (So thank you mom, for giving me that very first journal) (some names have been changed to protect the identity of certain persons…ha ha. I have always just wanted to throw that sentence in somewhere)

It was a hot summer night late in July 1998 and seventeen-year-old Emily was bored. She was trying to decide between going for a swim, and watching tv. She ended up wearing her swimsuit, sitting on the couch watching tv. She wasn't really in the mood to do anything that night, but her friend "Betty" called and wanted to go to the college church dance (You must be 18 years or older to get into these dances. No joke. They check ID's at the door.), but Betty didn't want to go alone and asked Emily to come along. Emily wasn't really in the mood for dancing, but Betty was her friend and she was begging, so Emily couldn't just leave her hanging. She went to get ready for the dance.

Meanwhile a few miles away…

Jeremy (twenty-four years old) was sitting around the house with nothing to do. His mother and sister were telling him he should go to the college dance. He didn't really want to. He is pretty shy and not much of a partier, but he was bored and decided to give it a shot. Before he left for  the dance his sister jokingly says, "You can't come  home until you've asked a girl for her number!" She knew he would NEVER do that because he's not that outgoing. (thank goodness Emily was or this story would have never happened.) Jeremy leaves for the dance.

Meanwhile at the church dance…

Emily was hiding in the bathroom waiting for the dance to begin. She had to come REALLY early before the "ID checker" got there, or she would never be allowed in. So, she was sitting there, waiting for the "go ahead" from Betty once some other people show up so she could come out of the bathroom and blend in with the crowd of college kids who actually belonged there. You see, Emily had graduated from high school shortly after turning sixteen (she was a bit of an over achiever, and she really hated high school, so she took extra classes, college courses and worked an after school job to get all the credits she needed ), so she wasn't exactly a normal teenager. She was more mature than your average seventeen year old, but driver's licenses don't give your maturity age (or most men out there would be stuck at the age of twelve forever.). So, even though Emily was mature enough to be at the dance, she wasn't exactly "legal" yet, and whenever a dance partner would ask the dreaded question "How old are you?", she never lied (she doesn't do that). She would tell them "I'm seventeen." and they would then suddenly have somewhere else to be. It was pretty discouraging for Emily to be stuck in dating "limbo" until she turned eighteen, which was why she didn't really want to come to the dance in the first place, but Betty needed her, and Emily was always a loyal friend. So, she was waiting in the bathroom for the go ahead. The dance finally gets going and there aren't too many people there that early on, so it wasn't exactly "hoppin" if you know what I mean. Betty decided to take off with some guy and left Emily at the dance (without even telling her. Thank you Betty.). Emily wasn't going to let that stop her from having some fun though. She was standing around with the twelve other people who had shown up so far. She felt a little foolish standing there by herself and she noticed a pretty cute guy standing alone too, so she thought to herself, "why not". She walked over to him and said "Hi, I'm Emily." to which he responded "I'm Jeremy." They started talking about how lame the dance was so far. More people began to show up and things got better. Emily danced with a few guys and one REALLY huge nerd that actually used the line "You are my density." (Back to the Future, really?) She danced with him anyway because she was a nice girl though. Jeremy asked her to dance a few times and they had fun (He had never asked her the dreaded age question, because thankfully, he assumed that since she was there, she had to at least be eighteen, right? ha, ha, ha!). She was pretty interested in him by then. So, when the dance was over and everyone was leaving, she decided to take a chance. She had not done it before, but decided "what the heck" and she quickly wrote her number down and gave it to Jeremy, telling him to call her sometime, before leaving.

Jeremy gets home from the dance and of course his sister asks jokingly "So, did you get a girl's number?" to which he answered "Yes." She didn't believe him. He showed her the small scrap of paper with Emily's number, but she still thought he made it up and was just messing with her. It still took him a whole week to get up the courage to call her, but he did. She invited him to go to Sonic with her and a few friends to enjoy one of her favorite things in the world (Vanilla Dr. Pepper and cheddar peppers w/ranch dressing). That was not a first date.

Their first real date was a double date with Emily's friend "Mimi" and some random guy (ok, it was my stepbrother, but that wasn't the awkward part). They went to dinner at 5 n diner and then went to see the new movie 'Armageddon' (remember that one!). The awkward part was that Jeremy said hardly anything the whole night. He was nervous, and that's just who he is. It takes him a while to warm up around people, but Emily didn't know that. She thought the date was a dud, and moved on with her life, while Jeremy moved on with his. The very next weekend though, Emily's friend Mimi was going on another date with "stepbrother" and wanted to double, the problem was, that Emily had no one to go with. Mimi suggested calling "that Jeremy guy" to which Emily vehemently refused. He was way to quiet! Emily was outgoing and loud and he just didn't seem very exciting to her. Mimi begged though, and Emily was just the kind of girl (and still is) that couldn't leave a friend hanging, so she called Jeremy and asked him if he wanted to go out with them. (though, it wasn't really what I would call a date, they were helping "stepbrother's" roommate move to Tuscon for college, so it was going to be an all-day thing.) Emily figured that at least she would have Mimi and stepbrother in the car to talk to though—nope! They ended up in a truck and somehow Emily and Jeremy ended up in Jeremy's station wagon (that's right folks he drove a station wagon! Emily was NOT impressed by that, but she's not so shallow she wouldn't date a guy just because he drove a nerdy car). Anyway, they had a two hour drive to Tuscon and back together. Emily wasn't too excited about it because she figured she would be sitting in silence the whole time. It wasn't until the ride home that Jeremy FINALLY started talking, like really talking to her and by the time they got back to Mesa, Emily thought "He's not that bad."

Three months to the day they met (July 31st), Jeremy and Emily got engaged (October 31st). The engagement story is a story in itself though. (I have that recorded in my journal too, but we'll save that for another time.) This was the beginning of a journey for Jeremy and Emily. A journey they had no idea would be so rewarding, and yet so difficult at the same time. When they decided to marry, they talked about how challenging life can be and they committed to each other on that night, that they would stick together, no matter what life threw at them, and life has thrown quite a bit at them since then. Fifteen years later, they still love each other, and life is still hard sometimes (ok, a lot of times), but they still try to stick together no matter what.

So that is the beginning of our story.    

Welcome to Autismland!

Hello! Welcome to Autismland!

I made the decision to start this blog, because Autism is a major part of my life, and I want to share my own experiences with it, and possibly help other mothers out there who struggle with it. Every mother who has an autistic child will have a completely different story to tell, because every child with autism is completely different. They all have different needs. In this blog, I will share how my journey into motherhood began, and then my trip through the rabit hole and into "Autismland". Those of you who have followed my family blog, may recognize a few of my posts, or wording from it, because I don't want to rewrite history. I started my family blog before my sweet Braden was diagnosed, so a lot of our journey is documented there, and I will be copying some of those posts to this blog. I will also be shareing our current adventures, as well as educational information as often as I can find the time (but when you have two very busy boys, and a fiction novel in the works, there's not always time to post every day. I'm still human people!).

I have two sons, and they both have Autism. Did I ever think that when I got married, and would have a family that I would have TWO special needs children? NO! I was terrified of even the possibility, and Autism was the disorder that I feared the MOST! (Can you see the irony?) I was a naive young newlywed who assumed that I would have six kids, and be a stay at home mom who made dinner every night, and baked cookies, and did crafts with my kids, and played with them, and have play dates with other moms, and just plain enjoy being a mom. We would be one BIG happy family. HA! God apparently had other plans for me. FYI: I will talk about God on this blog because He is also a major part of my life, and without my beliefs, I would have gone completely mad long ago! This blog is NOT going to be all sunshine and roses and the best parts about having children with Autism (Yes, there are wonderful things about having a child with Autism, but we'll get to that later). Having a child with Autism can be frustrating, and make you want to pull your own hair out sometimes. I'm not going to sugar-coat it. This blog is MY story and MY feelings. So, if you're looking for a story with zero struggles, good luck (there isn't a parent out there with ANY  type of child who doesn't EVER have struggles)!

If you're looking for a story with REAL life in it...Welcome to Autismland!