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.