We're home...but tired

We got up at 4 am this morning to take Tycen to Ann Arbor for his 7:30 surgery, so we're completely whipped. I meant to update the blog while he was in surgery, but it went so fast, I didn't really have time. Everything went as well as it could have and Tycen is now resting at home on my bed watching TV.

Dr. Caird placed the plate over his growth plate to slow the growth in his longer leg. Hopefully, the right leg will start catching up soon. Next, we're going to see a neurosurgeon to see if his tumor should be removed to help him walk better. The poor kid's life is just surgery after surgery.

Tycen is having surgery tomorrow

We decided last week to go ahead with another surgery for Tycen. His surgeon will be placing a plate over the growth plate of his tibia to slow its growth. We are hoping this keeps us from having to do the much more invasive surgery and healing process he had last time at some point in the future. She reminded me that there was no guarantee that we wouldn't have to repeat the last set of surgeries and the tibia stretching process, but this should help.

I am always apprehensive when Tycen goes in for surgery. He handles anesthesia well, but I still worry about him being under. I am bringing my manuscript to work on while he is in surgery, hopefully that will help me take my mind off of it, but usually I just pace the waiting room the entire time.

He may have to stay in the hospital overnight, and is actually hoping he does. He loved the activity room and says he misses the nurses. Eric wants him to come home the same day. I don't know, I like having the nurses there to help us deal with any pain he has. I would rather he be under the care of professionals for a short while. But, we have to pick Rome and Tan up from Eric's parents house if Tycen stays overnight, so it would be me staying in the hospital while Eric comes home with the other two. Neither option is ideal.

I will update this blog when he goes into surgery and is out of surgery from my Blackberry. I love technology.

Don't forget about autism awareness month

Remember that 1 in 110 are affected by autism this month and think of them all.

Feeling a little down

I've been talking to my friends a lot about this lately, but Easter has got me a little down. My mom has a huge Easter egg hunt for all her grandkids along with a meal. The kids always have so much fun. Roman will have to miss out on it.

I'm pretty sure that he might not even get what's going on, for one thing. He'd most likely just scream when I try to direct him to an egg to pick it up. Then, there's what's in the eggs. I can't demand that my mom fill all the eggs with gluten and casein free treats. That's really limiting and not fair to the other kids. It's such a free for all with 17 grandkids that his individual eggs could be marked either. I thought about switching out his candy with GFCF treats like jelly beans, but he's so into immediate reward, it wouldn't work. If I took something away from him to replace it, he would freak out.

Then, there's the actual Easter meal. Of course, it won't be GFCF. I couldn't even imagine asking everyone to eat like Roman, that's not fair. But there are lots of kids and I can't possibly keep Roman from snagging something off their plates all by myself, or even with Eric's help. Kids take their meals to go. There's likely to be food in the strangest of places, especially the candy they get from their eggs.

So Roman is staying home with Eric while I take the other two. We don't want them to miss out either. I feel really bad separating our family like that on the holiday, but what else can we do?

This predicament brings up a greater issue. I am afraid to take Roman anywhere. Some of it is because of his dietary restrictions. Off limits foods are everywhere and Roman's hands work so fast, he can snatch something and have it down his gullet before I could make even the beginning of a move to stop him. But it's more than that. Roman freaks out in unfamiliar places. He'll usually throw himself on the floor and cry. Once he calms down, he just lays on the floor the whole time. I feel so bad for the guy.

And then, there are other kids. Sometimes, I can't stand being around other kids Roman's age. This is my problem, and I need to get over it, but I just can't, not yet. I cringe when another two and a half year old starts telling a story with REAL WORDS. I want to cry when I see other kids Roman's age playing together and watch him off in a corner, staring off into space. I feel horrible about it, but I just can't bring myself to be around other two to three year olds unless I have to.

I have read other parents' stories of feeling this way, so I know it's normal, but it doesn't make it any easier.

Progress!

I often have people ask me how Roman is coming along. Obviously, the goal is a big enough vocabulary to communicate his wants and needs. He really wants to talk, but you can tell somehow, between his brain and his mouth, words get lost. So, his teachers have been working with us on alternative communication.

He's been using a PECS (picture exchange communication system) book lately. There are pictures of things he likes to do, like watch TV, play "I'm gonna get you" (chasing him down the hall to tickle him), and pictures of his favorite toys. There's also pictures of his favorite foods like bananas, apples, and grapes. He's been doing so well with it and we're all impressed with his level of communication with the book.

He has other ways to communicate as well. Recently, we've taught him to grab the hand of someone he wants to help him with something. For example, if I put something out of his reach, like a snack, the goal is to get him to lead me to it to tell me to get it down for him. He learned this after being shown one time! That's amazing!

Words are still few and far between. He likes to say "I did it!" when he turns on a light switch. It's not every time, but it's so exciting when he does it. Of course, he always "talks" about his dad. It's mostly babbling and the only word I can make out is "Dad". Roman misses him so much during the day. He's also still talking about the dogs and I'm trying to get him to say "cat" now since he really loves all the animals.

So, that's my Roman update. I know that I write a lot about the medical and dietary interventions, but I don't get around to bragging about my boy nearly enough.

Go State!!!

Usually when I try to dress the kids in green and white, I get heckled by my Hoosier-lovin' husband, bit I get a break for the final four. YES FINAL FOUR!!!
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This month in pictures

I just figured out how to post pictures from my phone, so I thought I'd share.

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Three kids, three posts today

I'm on a roll. Three new posts to my blog in one day!

I couldn't let today go by without making mention that Tanis has a milestone today. We're going to get her kindergarten shots today. She'll be five next month! My little girl is growing up and her wings are about to sprout. Next school year, she's going to fly away from me every single day. I don't know if I can handle that.

I need my Tan to cuddle with. I need her "I love you"s thirty times a day. I need her hugs. What am I going to do without all of that?

Wishing money grew on trees

Eric and I have been talking it over. We don't think we're going to go the DAN! route for Roman, at least not yet. We've already implemented the GFCF diet and the fish oil supplements. He's making so much progress as is with his schooling, that we can't see it getting any better any faster. I'm sure we'll reach a standstill at some point, and then we'll look at the biomedical treatments.

Money is a huge factor. Eric is the sole breadwinner and he's a public school teacher. Feeding, clothing and sheltering a family of five on that kind of salary is difficult as is. We just can't afford the treatments that the doctor will want to implement. A friend of mine suggested we look into SSI, but I don't know if I would call Roman "profoundly disabled" although I am told that autism does fit into that category. It would be nice to have some "extra" money to be able to afford treatments and a private speech therapist. And then there's the extra grocery cost of keeping Roman on the diet. It's getting expensive!

So, maybe I will look into SSI. I'm not even sure that we qualify. It seems that we're always just above the cutoff for any kind of financial help. It's hard to ask for the help, too. We should be able to provide everything our children need ourselves. But there comes a point that we just can't. It's not that Roman doesn't already get a lot of help, I just think he could use a little more and I wish we could pay for it.

Tycen and surgery

Tycen has an upcoming appointment with Dr. Caird. She's supposed to decide if another surgery is in the near future. It's an imminent thing, honestly. His lower leg, specifically his tibia, keeps growing faster than the other side. Almost two years ago, he had a surgery to implant a device that stretched his shorter tibia to the length of the longer one. It was so painful for him. Sometimes I cried because I just couldn't handle what he was going through. Tycen, on the other hand, never shed a tear. He whined every now and then, but he never cried. The process of stretching and healing took about nine months.

We're not necessarily back to square one, but the difference in his legs is visibly noticeable again. It's affecting his walk. Something must be done. Dr. Caird wants to put a metal plate on top of the growth plate of the longer tibia to slow down the fast growth. While it's less invasive than the last surgery (or surgeries, the process took multiple surgeries, four, I think), which included breaking his leg, letting it heal just a little and stretching it every day by the use of an external fixator for months, I still have a stomach turning queasiness about it.

Why do I have to put my boy through all of this? I'm not religious, but I am a believer in a higher being. At first, I was mad at God. Why would he put such a gentle and sweet boy through so much? I had no answer. I lost what little faith I had for awhile. Then, I blamed myself. It was probably my defective egg with a mutated gene that gave him NF anyway. I was sure of it. Then I remembered. It wasn't about the hand you were dealt, it was how you played it that mattered.

So, we're waiting to see what card is turned up this time. My gut tells me it's more surgery for Ty. I know he'll play it with the same strength as he always has. I stand in awe of that kid. MY kid. He does really handle it so much better than I ever could.

It's official

Roman had an appointment with the neurologist yesterday and I almost forgot to blog about it because it seems pretty obvious at this point. Rome got his official diagnosis of autism. Duh, right? But, with a diagnosis, we have a new world of opportunities opened to us, from research studies to DAN! doctors, we're armed and ready.

Honestly, things have been going so well that Eric and I think that we're going to go with what's been working for now. The schooling along with the diet and fish oil omegas are already producing wonders from our lil' man.

On an unrelated note, it's snowing here again. I don't care. I still have the attitude that spring has arrived. I just feel it.

The Good Life

When Eric arrived home the other night, after a long day at work, he took all three kids outside to enjoy the new, warm temperatures. I think I can pretty safely say the winter blahs are receeding. There is colder weather in the forecast this weekend, but it should be fleeting. More important than the weather, though, the coldness and dreariness of winter is leaving my body.

As I watched my children run, swing, play, and laugh with their dad, I did more than realize everything is going to be okay. I realized it was okay. Better than okay. Life is good.

In a time when others are losing their homes, we live on a restricted budget, but we are able to pay for everything our family needs. Others are unhappy with their lives while we enjoy every day. Some families need the income of two working parents and we have the luxury of me staying home with Rome and Tan. Others face much more severe problems with their children than we do, and for the most part, we have three healthy kids who are happy and well cared for.

Yes, there are things we cannot afford, but its all wants. Yes, our boys face challenges, but nothing we cannot handle or overcome. Life is good.

Therapy dogs

I have always had pets. Lots of pets. Before the kids were born, we had three dogs and a cat that had the run of the house. As things got crazy, adding the kids to the mix, the dogs kind of got the shaft. They were sent outdoors to the kennel during the day and came in at night. It's been that way since Tycen was a baby, except for when my Obi was dying and had a good three month run as a full time house dog.

I've been noticing certain relations between Roman and the two remaining dogs. I started bringing them in earlier at night, so they could play with Roman before his bedtime. He would chatter to them. He started calling out their names ( "Boo" and "Kissy" )and "dog". He was adding more words!

Today, I decided to bring the dogs in for the day. Roman wants to be around them all the time. He's talking to them and talking about them. There's something magical between a boy and his dog, but this goes above and beyond that. My dogs have my boy talking!

Speaking of Eric

I almost forgot to report Roman's most recent breakthrough! We were home on Friday night while Eric worked his second job as a high school athletic official, and Roman stood on the couch, looking longingly out the window.

I sat next to him and out of the blue he said, clearly, "Daddy home?"

I almost cried. Roman talked!

Thoughts on Eric

I was reading that the divorce rate of couples with autistic children was 80%. I've read about how it's moms that generally do all the work trying to fight the symptoms of autism. Add another special needs child on top of that and the statistics become much more grim. I can understand how and why this happens. Men are not programmed, either by genetics or upbringing, to cope with these challenges in general. Just like us women, they visualize having the perfect son or daughter in the conventional sense. When they are thrown the curve ball, they live in denial. Of course, I am generalizing. Eric is none of this.

While it is my responsibility to take Roman to school and deal with the bulk of the research and footwork that it takes to implement changes that can help, Eric is there cheering me on. He is also the primary contact for Tycen's schooling and recently set up his IEP (individualized educational plan) with physical and occupational therapists without much more than a few words of concern from me.

I couldn't imagine going through this without Eric's support. When I first mentioned autism, he didn't blink an eye. He didn't lament in it, instead he took the "What can we do about it" attitude, just like I had. He jumped on board with the Gluten and Casein free diet before I had even figured out how to accomplish it. He's adamant about what does and doesn't go into Roman's mouth. He's as excited for Roman to get into a DAN! doctor as I am. He dutifully plays Roman's educational games with him and asks after every home visit what the teacher taught me to do to help our son so he can carry out the plan alongside me.

He's always been this way. He sleeps on hospital couches just like I do whenever Tycen needs another surgery. He takes Tycen to get fitted for new braces. He insists on keeping totally abreast on all things concerning both our boys' treatments.

As I type this, he's off taking Ty and Tan to a college basketball game. He does the "good dad" stuff like that all the time. He's building the memories our kids will look back on when they have children of their own as a model of how to stay involved in their own children's lives. He makes time every night to play games with all three kids. I love the squeals of joy that fill my house when all four of them at play.

So, I must salute my husband, my partner, for everything he does for this family. He is so much more than a monetary provider, though I very much appreciate that as well. He's a real dad in every interpretation of the word.

Special kid, special diet

I have read quite a bit about the Gluten/Casein free diet (GFCF), and decided a few weeks back to start Roman on it. Almost 70% of parents have found improvements with their children who have autism while on the diet. Eric and I figured it couldn't hurt, so we started Roman on it. A lot of the improvements have to do with speech, which is Roman's primary problem.

This diet is HARD! I've tried to become an expert in reading labels, but there are so many obstacles in the way. Do you realize how many products have wheat or dairy in them? Not only that, but we have to be careful with things like toothpaste and laundry soap. Laundry soap, you ask? Well, when you have a kid who eats his shirt sleeve on a daily basis, you have to be concerned that he's not sucking in the gluten fillers in the soap.

I feel bad that Roman has been relegated to eating chicken breasts and fruit every lunch and rice Chex without milk for breakfast nearly every day. He doesn't seem to be missing the cow's milk, at least. He loves the vanilla soymilk.

Last week, Roman was at my mom's house for a few hours. In that time, he managed to climb on my mom's table and take four bites of her ham sandwich. I realize this wasn't mom's fault. She didn't realize he was such a climber. But, that means that the diet starts over. It takes months for gluten to be washed from the system and to see improvements. Now, we're back to week two since he ate the sandwich. It's just so frustrating.

I am extremely hopeful for the diet, though. I hope that Roman is part of the 70% that is affected by the dietary changes. I have a good feeling about it.

The sandwich kid

Tycen and Roman take up so much of my time and energy. Roman is especially consuming right now, obviously. When each of my kids were born, they were each promises of an idyllic being. My babies were perfect, and really, they still are. But, as a mother, you can never imagine something might be wrong with your child. They are supposed to meet their milestones, grow like weeds and live normal lives.

What's normal, really? In most circles, Tanis is what people think of as "normal". She's an average kid with a huge heart. Of course, in my world, she's so much more. Tanis is sunshine on a dreary Michigan day. She is love, exuding it from every pore in her body. She is a caretaker and plays mother hen to her brothers. She accepts her role and makes the most of it every day.

Tan's role is the filling in the sandwich. Look at a simple peanut butter and jelly sandwich. You see two pieces of bread, blatantly obvious. At closer inspection, you may catch a smear of jelly peeking out from between the sheets of baked dough. That's Tanis. She's not the first child noticed in the family, but she brings the flavoring. Without Tanis, I fear that my life would be bland lately.

I'm not knocking the boys, I love my boys very much. It's just that making delicious homemade bread is a tedious process. You knead endlessly, set the dough out to rise, punch it down, and start over. Raising Tycen and Roman is much the same. It's a process of doctors, school and research and implementation. Again and again. Making bread takes time and energy. The better you knead it, the warmer the environment, the more it rises. That's my task. I knead the bread, again and again, and watch it rise.

Jam is a different story. It takes a little sugar, but the natural fruit does most of the job. The flavors are already there, they just need a little coaxing and cooking to come out in a delicious puree. That's Tanis. She was born with all the tools to be as sweet as jam. We just need to throw in a little more sugar every now and then and some gelatin to congeal the natural fruit into a semi-solid jam.

Like I mentioned before, jam gets the shaft when you look at a sandwich, though. You hardly notice it at first glance. The bread overwhelms it. The boys overwhelm Tanis a lot, and I feel bad about it. She wants to go to school like her brothers. When Tycen was Tan's age, he was starting his second year of school already. Roman is only two and has already started in a formal education environment. Tanis is jealous, and rightfully so. She'll won't start school until next year with kindergarten.

Visitors, like Roman's teachers, and those outside of the house, like doctors, focus their attention on the boys. Tanis is unnoticed many times. I feel for her. She wants their attention, too. She obviously craves it, but those people just aren't for her. She understands on some level, but on a more primal level, she wants what everyone else has. It's hard to witness her going through this.

It's cliche, but I love each of my three children the same. Sure, I love different things about each of them, because they're all individuals, but I could never say, or think, I love one more than another. Never. I just want everyone to know that I have three children, not two.

I shouldn't be so excited about fish oil

We decided to try a fish oil supplement to help Roman's communication skills. It's really supposed to help. I'm pacing the house waiting for the UPS man. The stuff comes highly recommended by other moms with kids on the autism spectrum. Anything that even holds a promise of helping is worth it in my opinion.

Roman's home visit today was not fun. He wanted to just lay there and stare off into space. His teacher seems to think he may be having seizures and that's why he just stares blankly. He does it often. I read that 30% of kids with autism also have seizures. I don't know what to think of that. I don't want my baby to have seizures. I don't want my baby to have autism. I realize there are some things that are totally beyond control, but I want to know why.

Why?

That's my question lately. Why are there so many kids with autism? There has to be a reason. I'm not sure if I buy the vaccination theory. Roman was delayed in all of his shots. He didn't have his MMR until he was 2 and he was already exhibiting the symptoms of autism long before that.

Was it something I did?

What if my medications had something to do with it? Is it because he didn't get enough breastmilk before he went to formula? Is it because he was born early? All those things could be my fault. If I wasn't bipolar I wouldn't have to have had the meds. Could I have lived without them while I was pregnant? Maybe I didn't try hard enough to breastfeed. If I wasn't so overweight when I was pregnant, maybe I wouldn't have had the blood pressure issues that caused him to be born before 36 weeks. Maybe his prematurity contributed to autism.

I realize I want to blame myself. I want to blame someone and I'm the best scapegoat. I know in raising Tycen that I blamed myself for his NF, too. I was, and maybe am, convinced that it was my faulty egg that had the screwy chromosome that made him develop NF.

This kind of thinking is crazy and self punishing for no reason, somewhere deep down I know that. My mother thinks the reason I have my two very special boys is so I can do something great to raise awareness of NF and autism. I would like to believe that, but right now, I'm just feeling like an overwhelmed parent. It takes all I have to get through the days, playing Roman's specially designed educational games, giving what attention I have to give to Tanis, dealing with Tycen and Tan's fighting when he gets home from school. How is there anything left of me to give to these causes? I want to, I just don't know how.

Our pediatrician sucks

I'm pissed. I had already decided to change pediatricians a few weeks ago, but the old one has maddened me once again. First of all, they missed Tycen's diagnosis of NF. Thank God I had watched that Discovery Health program on it when I was pregnant. For some reason, that show raised a bubble of dread in my throat. It was as if my soul knew the baby I was carrying had NF. Then, the spots showed up. The cafe au lait spots are the first sign of NF. I had to point out each and every one of them before the pediatrician gave us a referral to a geneticist. I had to do the research on my own to find out NF clinic and support group. I could never explain in words how helpful they have been in our journey.

Then, they totally brushed off my concerns about Roman's development. "All kids develop at different rates. He seems completely normal to me," they promised me since he was 18 months old. Thanks for nothing.

Monday, first thing in the morning, I called them to make a referral for Roman to see a specialist to officially diagnose the autism. Have I received a call back yet? Nope. How long does it take to make an ever-loving phone call people. Every day is another day lost in Roman's world. I wish doctors would understand that.

To top it off, when I called, the receptionist asked me in a haughty tone, "And who suggested that you need a specialist. What makes you think he has autism?"

First off, your condescending tone had me reaching to make another phone call. I immediately called a pediatrician I had been recommended by another NF mom. The first thing I asked was how experienced the new doctor was with autism. "We have several patients with autism and the doc is very open to all therapies available to help lessen the effects of it."

Perfect. Not only does she have at least one other NF patient, like Tycen, but I heard just what I wanted to about treating autism. Even without an official meeting, I know I've found someone I'll like. I can't wait.

But, alas, I do have to wait. I'm waiting on our old pediatrician to make the referral to a pediatric neurologist and psychiatrist to make an official diagnosis. I need this desperately so we can get Roman into a DAN! doctor. DAN! stands for Defeat Autism Now! and is an alternative treatment course for autism. I told you I was going to do anything it takes.

The Fixer

When somethings broke, I wanna put a bit of fixin on it
When somethings bored, I wanna put a little exciting on it
If somethings low, I wanna put a little high on it
When somethings lost, I wanna fight to get it back again

Pearl Jam, The Fixer

That's me. I'm the Fixer. I always want to make things right. And now, I've been given two boys who will (and have) tested my abilities in that respect.

I've learned that you can't fix NF. Tycen will always have NF. It's not going away. So, we fix what we can. Tycen can now walk so much better with his surgeries and new braces. He'll have another surgery soon to slow the growth in his long leg. We're doing the best we can to fix it.

Tycen's Asperger's was another hurdle placed right in the middle of our run of parenting a child with NF. I was fortunate that the main fix for that was to send his to preschool. We lucked out.

His tumor is growing. There's a fix for that too. Someday, we'll have it removed.

Now that my insatiable need to fix is being tested by Roman. When he was almost two, I decided to call Early On, which is an early intervention program for developmental delays. he wasn't talking at all. I was sure that was the extent of his problems. It was an easy fix. He just needed help to start talking.

The evaluation was thorough. I was being hit by questions that I didn't think had anything to do with him talking.

Does he flap his arms like that a lot?

Does he avoid eye contact like that most of the time?

Does he always put things in his mouth like that?

Does he walk on his tiptoes like that sometimes?

Yeah, sure, uh-huh and yup. I headed to the computer to research what seemed like odd questions to me. One word jumped off that screen and into my brain: AUTISM.

My child have autism? At first, I was in denial. There was no way my sweet little man could have autism. He met his big milestones in the first year right on time. Searching deeper into the recesses of my brain, I realized, while that first year was normal, everything that came later was delayed. It wasn't just his speech. He lost his ability to talk. He use to say words, now he's limited to "mamamamamama" and "dadadadadadada". He never had interest in toys beyond those designed for babies. And of course, he did flap his arms, he did avoid eye contact, he did put everything in his mouth and he did walk on his tiptoes a lot.

Autism. You can't fix that. Or can you? I started reading a few books that told me you could. We've started with a special diet and soon we'll start a fish oil supplement that's supposed to increase speech and communication. We'll go see every specialist out there until I find a way to break Roman out of the cage of autism. We're going to fix this. I know we are.

Time to start blogging again

I have decided to start blogging again. It's not a good day for it, but when I make up my mind, I make up my mind.

Tycen is home from school today. He said he was sick and wanted to stay home. He never makes such a request, so I thought he was really sick. Apparently he's not sick enough to get along with his sister.

Roman is a handful lately. I plan to make a post on that shortly.