Weekend Waiting

Well, the full moon had no impact on this baby. We are still waiting around this weekend for the little pooper to come out. As we wait we are trying to get as many tasks done as possible, knowing that things are easier to accomplish without a newborn. Today we worked in the yard a bit, pulling weeds, cutting grass, and planting flowers. I got my window boxes planted yesterday in my nesting state. As you can see Cooper enjoyed working in the garden as well.

What's In Your Pantry?

I am starting to find the condition of our pantry quite humorous. We used to be a typical family with yummy items tucked away in the pantry. Staples such as Cheerios (here they are called Honey Loops), Corn Flakes, Special K cereal, Chocolate, Brownie Mixes, Flour, Pasta, Cans of Chicken Noodle Soup, Sauce mixes, Candy, Crackers, and Cookies among many other things have always had a constant, comforting presence in our house.

Now our pantry contains items that I never new existed and never imagined that I would be buying and eating. So, here are a some of the things that have started to take over our pantry:

• Potato Flour/Starch
• Corn Flour
• Rice Flour
• Tapioca Flour
• Agave Nectar
• Flaxseed Meal
• GFCF bread
• Rice pasta
• Corn Pasta
• Guar Gum
• Almond Milk
• Soy Milk
• Coconut Milk
• Tamari
• Soy Vanilla Pudding
• Rice Cakes and Corn Cakes
• GFCF Vegetable and Chicken Broths

In addition to these weird things, we are buying more fresh fruit and produce than ever. Sure it all sounds healthy and you would think that we would all be losing weight, but not yet. Believe it or not, I can still find the most fattening recipes using this stuff. This morning we had GFCF donuts. Yes, I made them from scratch! But I hope that over time we (Peter and I) will lose some weight with this new diet. Unfortunately, these new grocery items don't come cheap. It's more expensive to feed our family this way.

I am starting a new section on my blog for GFCF recipes. I will be posting recipes that we test in our house and those that get the stamp of approval from Cooper. Many of these will be recipes that even those who don't follow a GFCF diet can make and enjoy. You will be able to find these recipes by clicking on the tab at the top of this page underneath the main picture. If you have any recipes that you can add, please send them to me. I promise to give you full credit. I am really bad about vegetables. I have never been a big vegetable eater and just don't have a clue how to cook them. I would love your suggestions. My hope is that this will be a help to other families out there struggling to find good things that their kids can eat, whether autistic or not.

What Makes Me Happy

Do you know what makes me happy?

It's this guy, brushing his hair with the dog brush (at least it isn't the toilet brush this time).

And it's this guy "riding" this tractor . . . on the sofa.

And I wouldn't be truly happy without this handsome guy on the left who has been spending a lot more time with Cooper outside and coming home from work each evening to bathe and put Cooper to bed.

Pregnancy Update Week 39

Week 39. I didn't even go this long with Cooper (born at 38 weeks) so in my head I was really counting on it being the same with this baby. Official due date is one week from tomorrow. Baby is very low, but according to my doctor he thinks I may go another week yet although anything can happen at anytime. He started saying that when I get to 10 days past due date we would have to talk more, and I felt the urge to stick my fingers in my ears and hum loudly. I am not even going to think about 10 days past due date.



However, in the last 2 days I have cleaned bathrooms, scrubbed faucets with a toothbrush, mopped all the floors, dusted, washed all the bed linens, moved furniture, and washed every bit of dirty laundry in the house. Tonight is a full moon, so I am crossing my fingers that things will start moving along.





Here is a picture of the belly at 32 weeks.

We actually took a couple last night as well, but Peter's photography skills paired with a long day of cleaning, therapy, and playground results in photographic images that will never see the light of day. We'll try again later this week.



Overall this pregnancy has been pretty easy, given that I have other things to think about than being pregnant. Running after Cooper and carrying him has kept some of the pounds off. Well, that and the lack of my favorite restaurants that Augusta has to offer. At 39 weeks I have gained 30 pounds. Yes, that is a lot, however it is a full 20 pounds less than I gained with Cooper. I also don't have nearly the swollen feet/ankles that I had with Cooper. I can still wear shoes! And this baby kicks, elbows, pokes, and rolls much more than Cooper did. The best thing . . . no indigestion! (Knock on wood.)

Sure it all sounds rosy, but at the end of the day I am completely exhausted. And while carrying around Cooper may have helped with the weight gain, it also means that in addition to my extra 30 pounds, I am holding another 35 pounds in the front which makes 65 pounds. And I can feel it. My back aches, I have leg and hip cramps, I pee a minimum of 6 times at night, and I can't get comfortable. Ever.

Not much longer, right? Anytime now, right? Right?

GFCF (a.k.a. Starving the Claus Family)

We've done a lot of research in the last months on this whole GFCF (gluten/casein free) diet for kids with autism. Scientists and doctors are skeptical at best, but many parents of kids with Autism are convinced that this is the cure. I am hesitant to let myself believe that it could cure autism, however it is certainly worth a try. After all, it is just food.

What am I talking about? Just food? Food is the core of our family! It is one of our main joys in life!

We have been searching over the last month for good recipes that fit this diet. I was adamant from the beginning that if Cooper was going GFCF, then gosh darnit, our whole family would be GFCF. Well, one taste of gluten-free bread (which I could not even swallow) and my resolve faded. But Cooper ate it! Since then we have slowly found a handful of edible items. But to be honest, they are just that. Edible. Not delicious. Not mouthwatering. Not scrumptious. But tolerable. I have wavered between feeling 95% confident that we can handle this and feeling overwhelmed and frustrated at the lack of things I can find to feed this family. After all, I don't want to make it a habit to feed Cooper things that I wouldn't eat myself.

This isn't easy. I know that no one said it would be and life isn't easy. But man, this is tough. I just want to go about normal life, and this diet sure makes it hard. And out here in the Bavarian countryside, there are no shortcuts. There's no dairy free cheese substitute, there's no whole foods store with frozen GFCF chicken nuggets. There's no easy way out. Every meal is a strenuous decision. Every trip to the grocery store entails reading labels (in German) of every item, and 99% of the time replacing that item back on the shelf. I leave with a migraine and a nearly empty shopping cart. Every. Dang. Time.

And packing a lunch for Cooper's school? Like climbing a mountain.

And eating out? Impossible.

And picking up something quick when you are on the road or get stuck somewhere? Forget it.

I am feeling so much pressure right now to find stuff for our family to eat. To force feed things to Cooper that I don't enjoy eating either. There's no creamy sauces or yummy butter to hide veggies in anymore. Meals are a battle of will. And my will at the moment is weak. I want to cry at the end of every meal with Cooper. Is it the pregnancy hormones or trying to face the fact that our lives are being flipped upside down? Or is it all of the above mixed in with struggling with living in a foreign country? People keep telling me that we are such good parents and we are so strong. I can't decide if I should laugh in their face or scream and pull my hair out.

The bonus is that as you start this diet, kids go through withdrawal of the glutens and dairy and their behavior gets worse. This is exactly where we are at the moment. While the literature out there says that we should be encouraged by this, it is so hard to deal with. Cooper is unmanageable, unfocused, wild, clumsy, etc. etc. etc. He seems more autistic than ever. And we aren't even strict on this diet yet. We're just decreasing the bad stuff and trying new recipes.

But I wouldn't put Cooper through this and I wouldn't put Peter and I through this if I didn't think it could work. We will stick it out. We will figure it out. We will do everything we can. Because he is just so worth it. His kisses and smiles and hugs and sweet face are so worth it.

And if this diet is the way that I will:
. . . get to know what his voice sounds like when he has something to say
. . .and to find out what his thoughts are and what scares him
. . .and to hear what he will think of his new baby brother or sister
. . . and to have him tell me what his favorite cartoon really is rather than just guess
. . . and to learn if he likes gummy bears better than chocolate
. . . and to be able to know where it hurts
. . . and to hear him express in words that he loves his daddy and me
. . .and to get to know my little boy the way that a mommy should know her son

Well, if this diet could do all that . . . it doesn't matter how it tastes. That would leave me so much more satisfied than any great tasting meal ever could.b

Progress

We've had a lot to chew on in the last few months and a big list of things to do for Cooper. We are slowly making our way through them. As the English saying goes, the only way to eat an elephant is one bite at a time. Here is what we have been up to.

We have visited three possible schools for Cooper and he even got to particpate in two of them for a few hours, and have decided on one for Cooper to attend in the fall. We will go to an autism clinic in Munich this summer which will hopefully be able to provide some autism specific therapy. Also in the next months we are going to bump his regular therapy up to 3 times per week. We are going to start the GFCF diet soon after the baby is born(more on that in another post coming up).


I mentioned in a previous post that there is a special therapy that is somewhat new and has great results with autistic kids. This is called ABA (Applied Behavioural Analysis) Therapy. Peter and I attended a workshop this past weekend geared towards teaching Parents how to help their kids and introducing the basic principles of this therapy. It was an expensive workshop, but very much worth it. The therapy is fantastic and I can totally see Cooper responding really well to the techniques. Unfortunately, this therapy is not covered by the state or any insurance in Bavaria (other parts of Germany are starting to offer some coverage) and averaging at about 9,000 euro per year it is significantly more than we can afford right now. I can't tell you how frustrating it is to have finances stand in the way of getting potentially life changing treatment for your child. But I guess this is a situation that a lot of parents have to deal with.


In the meantime, we are going to appeal to the Bavarian government and our insurance company. It surely can't hurt and with other families in Bavaria currently attempting as well, the more people that request the more likely it will be covered in the future. We are already starting to implement some of the things we learned at the conference, but our attempts are clumsy at best with the little knowledge we have.

If you have actually read this far, I am really impressed and thankful. I would imagine this is all unexciting, boring stuff to most, but it is the center of our lives at the moment. Pray for us to continue to be perserverent in this fight to help Cooper. It's not cancer, but it is so real for us right now. Many parents lose their kids to terminal illnesses. Autism is not a terminal illness, but many parents "lose" their kids to autism in another way. We don't want that to happen to Cooper or our family. We feel lucky that Cooper is not on the severe side of the huge spectrum of Autism. Pray that God helps us to make the right decisions and that He would make the right therapies available to us. Finally, pray for families struggling with autism in general. The workshop we went to was sold out, packed full of parents and therapists who have it much worse than we do, all looking for answers and ways to bring their children back from whatever world they feel the need to escape to.


Thanks for following our journey.

Our 3 Year Old

It is about time that I got around to posting about Cooper's birthday, which was nearly 3 months ago (can I really be that behind?).


We started his celebration at a place called Lollihop, which is an indoor play area. He and his two girlfriends, E and G had a great time. I was amazed at how good he was at climbing and jumping and sliding through all of the play things. He got to play in giant ball pits, ride on a train, drive a little electric car with Papa, climb and crawl through a giant maze, ride a play helicopter, jump on those big blow up bouncy things and on some trampolines as well. Aunt Tina came, too, and I was so happy to have someone else other than my pregnant self there to chase Cooper around. He tasted his first slushy, but wasn't a big fan. So, mom had to finish it for him. These are the sacrifices I am willing to make for my sweet boy! A trip to McDonald's for dinner on the way home was an added treat since there was no chance that Cooper would make it all the way home before falling fast asleep.


The next day, Peter's parents (Oma and Opa), Peter's sister (Aunt Tina), and Peter's Grandmother (Tik Tak Oma) came to our house and we enjoyed some cake and sang Happy Birthday to Cooper again.


Cooper, you are such a joy at 3. We are having a great time being your parents and watching you grow. You are the sweetest, most handsome, and tallest 3 year old we know. We can't even remember what life was like before we had you! We love you so much!

2 New Accomplishments!

Cooper's timing is always amazing to me. Always at times when I am struggling with his slow development, he suprises me. Last night consisted of 2 new firsts for Cooper.

The first was that he learned to drink from a cup. For some reason he has been afraid to drink from a cup, although he has no problem drinking from a sippy cup, water bottle, or a straw. But he just would not drink out of a cup. Peter decided that he was going to tackle this yesterday and while he held Cooper still, I tilted the cup. Cooper put up quite a fight, and then he realized that what was in the cup is the same apple juice that he always drinks. And that was it. Now he drinks like a big boy. We cheered and clapped for him and gave him gummy bears between sips, and he knew that he was doing something big. He had the sweetest proud smile on his face. In fact, he drank so much enjoying his new skill that Peter decided to move on to the next thing.

Peter put Cooper on the potty right after leaving the dinner table. Cooper has had much experience at this point sitting on the potty, but he has never done anything other than play. But with all the juice, Peter felt that something was bound to come out. And lo and behold, something came out. A great big stinky on the potty! We all cheered and clapped and made a big deal out of it. We talked all about the stinky and then let Cooper flush and wave "Bye, Bye" to the stinky. It was really funny. And earlier today, Peter got Cooper to go "tee tee" on the potty. Potty training will take quite a while with Cooper, but we were happy to have made this big step forward.

And who did it all? Papa did.

I'm Back

OK, I'm back. I am done with the pity party and have rejoined the real world again. Judging from the butt imprints on the sofa, I would say I have done enough sitting and wallowing in all the unknowns of life.

First off, the results from the clinic. After a lengthy and thorough testing period, the doctors and therapists at the clinic believe that Cooper has autism. I know. It is that "A" word that I didn't want to hear or face. But as we all know at this point, it is not a huge surprise. Just disheartening and yes, it hurts. But I am putting all that aside for the time being because the label doesn't matter. What matters is that we now have lots of options to consider that could help Cooper. And that is what this is all about. Figuring out how best to help Cooper.

I mentioned in the last post that we have a lot of work to do. And although overwhelming at first, we are slowly digesting all the information and sifting through it all to determine what we think is best for Cooper. Here are the main points to come out of this:

1. Even Integrative Kindergarten (with 10 normal kids, 5 kids who need more help, 2 teachers and an assistant) may be too much for Cooper. He could function in a setting with this many kids, but it is questionable if he would be able to filter and focus enough to actually learn. There is another school about 30 minutes away from us with smaller groups, more trained therapists on hand, and specialized therapy opportunities (such as music therapy, swimming, working with animals, etc.) where Cooper could have a better chance at learning all the things he is supposed to learn in Kindergarten and have more therapy integrated. However, this school is even harder to get into and we don't know yet if there are normal kids there as well, which is really important to Peter and I.

2. Cooper could benefit from a type of therapy called ABA Therapy (Applied Behavioral Analysis). This is not very widely offered and we only know of 2 places, both between 45 minutes and an hour away. From what we have seen on the internet, this therapy usually isn't covered by insurance and in the US it can cost upwards of around $20,000 per year, however we don't have any idea what the costs would be in Germany. All we know is that it can be an incredibly beneficial therapy and it is specifically for autism.

3. Since there are no guarantees that Cooper will get a spot in the school mentioned above, we still have to continue in the direction of finding him a spot in an Integrative Kindergarten. There is still much work to be done on this front.

4. We need to seek out a pediatrician that has more experience with kids with autism. This wasn't discussed at the clinic as a necessity, however we do feel that it is important that the physician who treats Cooper be familiar with autism. We spent a lot of time trying to convince our current pediatrician that things weren't right with Cooper, so we would prefer to have a pediatrician that is familiar with different ways of treating Autism.

5. Perhaps the most daunting is this last step. From much research on the internet and also through a discussion that I have recently had with a friend and pediatrician back in the US, it is becoming more and more apparent that Cooper should try a special diet can have a big impact on kids with autism. This consists of three parts. The first being a treatment to rid the body of excess yeast. The second and third parts are to eliminate glutens and dairy from the diet. This is commonly referred to as a gluten free and casein (dairy) free diet or GFCF diet. This pretty much would eliminate EVERYTHING that we currently eat. Glutens are found in wheat, flour, rye, oats, bread, pasta, cereals, cookies, crackers, soups, sauces, seasonings, artificial colors, and candies. Dairy of course consists of any milk from animals (soy milk would be allowed), butter, margarine, yogurt, cheese, and ice cream among many others. From what I have read, people who are on a GFCF diet usually need to take vitamin supplements to ensure that they are getting the calcium and nutrients they need, however many vitamins contain either gluten or dairy so we would need to seek out the right vitamins as well. Cooper would be allowed to have most fruits, vegetables, potatoes, rice, and I am not really sure yet what else. Obviously this will take a lot more research before we are ready to take this on, but all the information leads us to believe that it wouldn't be fair to Cooper not to try. It's just hilarious to think about Peter and I having anything to do with a strict, regimented diet. (STRICT?REGIMENTED? I'm not sure I have ever used those words in my entire life. Certainly not pertaining to food!)

So, you can see how all this has had me wallowing in self-pity on the couch with nothing but glutens, dairy products, and google keeping me company. I just needed a moment. But I am back. I truly believe we can do this, and if nothing else Cooper deserves our best efforts. It feels good to have a game plan and to be moving forward. Sure I have some scary thoughts, and I will share those over time. For now though, I am armed with a mother's love for this wonderful little boy and we will do whatever it takes to give him every opportunity possible.

Now, if you'll excuse me, I think I need to go have a bunch of bread and some ice cream. We have to get rid of this stuff . . . for Cooper, of course! :)

Feeling of the Day

The feeling of the day is . . . . deflated.


Maybe I should call it the feeling of the hour, since my feelings seem to be all over the board at the moment. We finished up at the Vogtareuth clinic on Tuesday. The doctor was great, and we were also joined by one of the therapists (Cooper's favorite one as a matter of fact) for a very lengthy discussion about the results and next steps. And in the end, I just feel deflated.


Wishing things were different. Wishing I didn't feel guilty for wishing that. Wishing I knew all the answers. Wishing I didn't have to ask these questions in the first place. Wishing my German were better so that I could do a better job fighting for Cooper. Wishing I had done more things before now. Wishing my mom were here and that I had some other close people around. Wishing that instead of being so deflated trying to catch tears, I was tackling all the ways that I can be helping Cooper. Wishing I could see into the future.


My head is so full trying to process everything at the moment that I feel like the image you see looking into a funhouse mirror where your forehead is all stretched. I think that Peter and I are both exhausted at the moment, and the irony is that we are only at the beginning of this journey.


We have a long list of things to do now that will take up a lot of our time, and with only 9 weeks (9 WEEKS!!) to go before the next member of our family arrives and Peter's work as busy as ever, there is no time to waste and no rest for the weary. I'll update later with more specific details about the results, but for now we just need time to process and time to figure out what is best for Cooper and for our family.


I am praying for lifted spirits, renewed energy and perserverance for Peter and I, and that things fall into place quickly. And in the midst thanking God for the constant (albeit sometimes painful) reminder through rolls, stretches, and kicks that a healthy baby continues to grow in my belly.