Autism Testing

So once again life is crazy and I am not keeping up. So much is happening I almost don't know how far I should go back, so for now, I'm not.

We finally were able to have Nathanial and Ethan tested at the Mercy Autism Center a month ago. The good news is that niether one of them was found to have autism. Ethan was iffy anyway and we weren't sure on him, so that was understandable. Nathanial was surprising - and still is. He met criteria for the diagnosis in all areas, except social. When the examiner was speaking with him, he supposedly asked what her children were for Halloween. That showed an interest in her and her family AND him trying to continue the conversation. Otherwise, even socially he met it. Since then we still worry about Nathanial and just have no idea what is going on with him, really. Because although much of it is explained through the other "issues," much of it is not. I suppose time will tell. The three watching the evaluation said they never saw any hand flapping (which is what I reported) and when the examiner came in, they said that to her. She said, oh, no, he did it....he was probably out of range for the window, but it would be on the video. And, sure enough, it was. He also has the very odd speech, high, high pitched voice, echolalia, etc, but he asked that one question.

That, however, does not mean that they do not have a whole host of other issues to work through. They both have a sensory integration disorder. Ethan is incredibly sensory defensive (meaning he seeks sensory input) while Nathanial is more sensory sensitive (he avoids it) most of the time, while others being sensory defensive. I had no idea you could be both, so that was good to know. They also have an auditory processing disorder which is affecting a lot. They both have a "severe and significant" language delay. Finally, they also both have motor delays.

We were told that their issues are being caused by a combination of being preemies (even if they were near term), multiplicity, pregnancy complications and high risk pregnancy, labor/delivery complications, low birth weight (more for Nathanial), severe preeclampsia - and well, you get the idea. All of those things are known factors for many of the things we are dealing with and when you combine them, you rather get an almost perfect storm. But that is also very positive - because it means that much of this, with intensive therapy, they may outgrow.

An auditory processing disorder is that when they are hearing things spoken to them, it gets jumbled and they can't decifer it quickly enough to respond. By the time they do get it, it's too late, the conversation has moved along. They then also have difficulty even expressing what they need or want so all of that adds to the frustration.

Most of Ethan's aggression and anger and extreme OCD tendency's are coming from not understanding and not being understood. He's trying to control whatever part of his world that he can. Ethan's language skills are at a 2 year, 4 month old level and he is only understood by unfamiliar listeners 50% of the time which puts him in the 2nd percentile. No wonder he's frustrated!

Nathanial is understood by an unfamiliar listener 75% of the time, but his overall language skills are much more severe than Ethan. He is only at a 1 year, 5 month level and is lower than the 2nd percentile of his same age peers. They did immediately see and recognize the giggly, out of control behavior as being a stress response and not just something "cute." This has been hard for us because noone else really has and it breaks our hearts when he gets all giggly and squirrely. And he is a very happy little boy, so it can be hard for others to recognize the difference between stressed out giddy and happy. The examiner said she was glad I had warned her, because then she knew to watch for it. When he was trying to do things he couldn't do, he would get a split second panicked look and then just go into his giddy, hyper, running all around response. If you aren't looking at his face for the panic look, you are going to completely miss it.

 Now we move forward. We've been making and putting up story boards all over the house to help them see their schedules and understand the familiar. They need lots of visuals to get through their day. Their teacher is working hard on also doing many visuals at school - more than she already has. We will work hard on them understanding their schedules through visuals until after the holidays and then we will start to change it up a bit (by putting in a "change" card also so they see that). This way, eventually, they will learn to tolerate change a little better. Then we also change the direction of their speech therapy - which is what I have been trying desperately to do for a while. They also have access to the occupational therapist at school and she will be working with their teacher to make things even easier in the classroom.

The best news was that I can homeschool them and this may actually be an excellent option for them. We've prayed about it and are still praying about it. I have been very convicted that I should be homeschooling my children (and am going to be starting Austin in January), so this is positive for me. We are still praying over it and will continue to pray diligently so that we are within the Lord's will and not our own.

Completely Random

So much has been happening and my thoughts are so scattered that I feel I cannot do justice to whatever it is I might want to say. So much has already happened that I feel I have neglected my blog for so long and I'll never catch up; which leads to me putting off posting and then getting further behind. It's an endless cycle. It's gonna stop soon and I'll just post whatever I feel like, but I feel like I should say something in case you've been wondering "where in the world did she go?" I'm still here and I'm determined to just start in and then post about our summer/fall randomly. Just thought I'd warn you....it's probably gonna be scattered! Which is OK, because it'll match my brain!

I do still plan to continue posting about our infertility struggles - I think I just need a tiny break for right now (will probably get back to it next week). I also want to start posting about our mission trip, which will definitely be a multi-part series with all I have to say! And, of course, I want to post about everything that's been happening in our lives at home.

I think that I am feeling so overwhelmed lately due to some major decisions we have made recently. The biggest one is that Nathanial and Ethan are both going to be evaluated for autism in Dubuque at their Autism Center on November 2. I will post soon on all that I've been feeling.

I'm still here, still thinking about this daily, still realizing I need to post more often (this is my only "journal" for these times in our life, so it's important to me to keep up for myself!), still trying!!

Infertility and Blessings - Mood Swings, Mixed Emotions, and Baby

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you. Plans to give you hope and a future."
Jeremiah 29:11

I was so excited to get pregnant with Aidan and so very thankful for the blessing that God had given us - this second chance at parenting - that while I was pregnant with him, I promised Steve I would not pursue any more children through infertility treatments. Going through infertility treatments is draining emotionally and can be very hard on a marriage. You would think trying to create or enlarge your family would only bring you closer as a couple - which it does do - but it is extremely rough, also. There are so many things that go on emotionally that you are definitely not yourself. You have all of the emotions of not being able to get pregnant, the negative test results every month, the ups and downs just within a 28 day period...it definitely takes it toll on an individual and a marriage.

To give you an idea of just a touch of the emotions of a cycle, here is what can happen emotionally during those days. The first few days you're not fun to live with, as is anyone, but you do have hope for this cycle. Then begins the medications - which do not make you a pleasant person because of all the "artificial" hormones that are raging through your body. The medications make you almost psychotic. They cause you to go up and down, but mostly down, and as for me, I was a real witch during that time. Conversely, there is hope. Excitement about the possibilities. Then the every other day ultrasounds to see if you might, just maybe, be producing follicles. And the excitement when you see that you are, indeed producing follicles. And the frustration when the follicles aren't growing fast enough or are slowly forming or disappear or burst. And then the excitement again when everything is ready to go and you get another shot to cause the follicles to "ovulate." Then the wait until you can do inseminations, which are pretty "uncomfortable" at best. Followed by taking it easy and the waiting game. Fourteen days of waiting, to be precise. All during that time, you are imagining that you are definitely pregnant, you just know it. And almost immediately on it's heals, you know that you are not and this month is one more month that did not work. Fourteen days of wondering "did it work?" "Will we have another baby in several months?" Finally, you get to go in to take the blood test....and then wait some more. This wait seems to take longer than the fourteen days because now you are waiting to see if it worked or not. The call that comes, you know, holds either ecstatic enthusiasm and possibilities or absolute devastation. And just statistically speaking, 99% of the time, it's devastation. And so begins the entire cycle again.

So you can imagine why I promised not to pursue it again and you can imagine my devastation when, within two hours of Aidan's birth, the realization that I promised something I knew I wouldn't be able to live up to. I knew I wanted another baby - and I knew I was willing to go through anything to get there. But I also knew that Steve was definitely not ready to hear that and definitely did not want to relive all of that again. So I didn't tell him right away, but I also knew that he knew what I was thinking and feeling.

We were told by my OB that the best possibility to get pregnant again was to try immediately, so we did do that. There was never a real "break" in trying to get pregnant; but I also was aware that while nursing the chances were low that I actually would get pregnant anyway.

I was determined to enjoy every bit of Aidan that I could and not wish away his babyhood. It is easy to complain and not enjoy everything about babyhood when you know you are going to have more children. When you are able to take for granted that there will be more children and it is just a matter of time, you can "waste" those early days/months/years. I know I did with Austin, because I knew there would be more some day. With Aidan, I did not have the luxury and it did help me to enjoy most aspects of a newborn. There are still bad days and there are still things you aren't thrilled about, but all in all, I enjoyed my finite time with Aidan much more.

Obviously, as time went on, I realized I was not going to be in that percentage of women who are blessed with another baby right away. I knew that it was going to take more and I was very ready to try again by the time Aidan was a year old. The question was....was Steve??

Infertility Blessings and Ponderings - REs, Injections, and Aidan

When Steve and I got married, we knew that we immediately wanted to start a family and figured it would be realitively quick. I mean, I got pregnant very easily the first time so this time would be a cinch, right? Surely God would bless our union quickly. As we discovered, that was not the case at all.

At first, it was baffling and I didn't understand it. I was having other problems, so was already seeing our family doctor who referred me to an OB/GYN. It was then that I was diagnosed with PCOS - Polycystic Ovarian Syndrome. I won't go into the details of PCOS (it's very complicated) but it was the reason I was struggling to get pregnant, along with a lot of other problems. Then I recalled a conversation a doctor had had with me when Austin was about six months old. I was having some issues and he had off-handedly made a comment about maybe finding it difficult to get pregnant the next time I tried and so not to wait too long to seek help if I didn't get pregnant easily. I believe he knew at that time that I had PCOS, but for whatever reasons, he didn't tell me. It was devastating to hear that I had PCOS, but on the other hand, I was blessed enough to know what was causing our infertility. Many people never know. And, we also were blessed that it wasn't both of us causing it, so we only had one obsticle to overcome.

The road to getting pregnant with Aidan was very difficult and heartbreaking. I had one miscarriage that I am positive about during that time - prior to starting any treatment. I now know that I probably lost that baby because of low progesterone and had I known I had PCOS it might have been preventable. The months upon months of negative pregnancy tests was almost unbearable. Add to that, medications that make you literally about go insane with the mood swings they cause and it was not a pleasant time in our lives at all. The OB/GYN that I had at the time also was fairly new to the practice and didn't have a lot of experience. Since I had no idea what to expect, it wasn't a great situation. I was on Clomid for 7 cycles - which is unheard of. We had IUIs without any ultrasounds, only bloodwork follow up to find out that, once again, I had not even ovulated so the IUIs were worthless. For a few of the IUIs, they let us sit in the waiting room for over an hour - an hour after we left home, so two hours after the sample was attained. When I complained about this after the third time that it happened, I was told that "it was a busy practice." After several months, I grew frustrated with the lack of care, and moved on to an RE (Reproductive Endocronologist - infertility doctor).

We began that with a HSG - hysterosalpingogram - which is a fancy way to say torture. They wanted to be sure that both my tubes were open prior to even attempting an IUI which may be useless if a) they were both blocked or b) the side was blocked that I was ovulating on. They determined the right tube looked a little blocked, but the left was open.
At our first appointment with the RE, they did counseling on "selective reduction" and when we refused to even consider the option, they said they would limit how many follicles they would trigger with. Due to my height and previous pregnancy history, they would not trigger if there were more than three follicles because they believed to carry more than triplets would be extremely difficult on my body. They also made it very clear that any more than one baby, in their eyes, was not a success. After all that, they began a regimen of a cancer drug, injectables, an hCG trigger shot, IUIs, and progesterone supplements. After four months of negatives, we finally got a positive! With the help of the progesterone supplements for the first three months, I was also able to maintain that pregnancy. We were able to go in to see if the pregnancy was viable at seven weeks, when we saw one little baby and a very healthy heartbeat. At that time, I was released to the care of my OB.

I knew I was not going back to the practice we had used prior to the RE, so we began searching for a new OB as soon as I discovered I was pregnant. We were so blessed to discover one of the very best OB/GYNs definitely in our area, and I believe in the state of Iowa and beyond. He was in a practice alone - which was our original primary reason we picked him. The second was that he had a lot of experience in high risk pregnancies, which we knew could be an issue if my pregnancy with Austin was any indication.I had a fairly uneventful and healthy pregnancy. I did develop pre-eclampsia again, but we were able to keep it under control until he was delivered. Aidan Charles was born on June 6, 2003 at 8 pounds, 11 ounces and was very healthy. I was so excited and so thrilled to have him join our family!

Infertility Blessings and Ponderings - Childhood Desires and Adoption

"For I know the plans I have for you," declares the LORD. "Plans to prosper you and not to harm you, plans to give you hope and a future."
~Jeremiah 29:11

I have been thinking a lot today about our struggles with infertility and the amazing ways in which the Lord worked through all of it. Looking at our family today, many people would believe that it was easy for us to create a family and we take it for granted -when truly it was and is anything but. I know people believe this who do not know us and have not met us....I know this because I know it was how I felt when I even saw a family with two children just eight short years ago. I feel the Lord is wanting me to share a bit of our struggle today to encourage someone. I'm not sure who, and I'm not sure why exactly, but I pray He uses this post to give hope to someone reading who may be struggling and I just don't know it. I'm also not real sure of my thought process as I even begin this post....I just have a driving force to share whatever it is that I am about to share, so please forgive me if it doesn't flow nicely or even make complete sense.

Growing up, I always wanted six children - believe it or not I even wanted five boys and a little girl at the end. Do I believe now that God gave me that very specific desire? Absolutely! As a child, anyone who knew me will tell you, I was I always 'pregnant.' When I was little, I wanted to be first a mommy and then president of the United States (for a long time, I really believed I would be, too). As I got older and realized I needed more concrete goals by societies standards, I really still wanted to do something in politics, so figured I would become a lawyer and then eventually be a senator. To me, this did not seem unattainable. But still, I wanted to be a mom first and foremost. I think the whole lawyer thing only really was because all I really wanted was to be a stay at home mom, but by that time, I knew that wasn't an acceptable answer. In truth, deep down, I just really wanted to get married and start a family as quickly as possible.

I didn't necessarily go about this the "correct" way. Fresh out of high school, I met someone. Did I think that he was "the one?" I'm not sure I ever really believed he was. Did I think that he was the right person to begin a family with? I'm fairly positive I knew he wouldn't be around - no matter how much I tried to fool myself at first. Turns out, I got pregnant relatively easily that time. There was a lot of turmoil in the relationship and in my pregnancy and by the time Austin was born, his biological father was no longer involved. I did desire him to have a strong relationship with Austin at that time, but it was not to be. Looking back, I am so very thankful he was willing to relinquish parental rights to Steve so that we were able to begin our family as a "real" family. No, it wasn't easy going through that transition (for reasons which we now totally understand), but God has worked through all of that, also. Steve's adoption of Austin was complete on November 21....just three months after we got married.

(OK, I had meant for this to be a one-post deal, but as I'm writing this, I'm realizing it will be much longer than that. So, I'll post the next part tomorrow and in the days to come!)