Archive for December, 2008

Hoping for an amazing 2009

December 31, 2008

So another year is rapidly drawing to a close. I have to be honest and say that 2008 wasn’t the best year of my life. 2007 didn’t end all that hot either as that’s when we first learned that Josiah had autism. I think 2008 started out ok because we were still so busy getting everything in place for Josiah and we had a hope that all the stuff we were doing would make a huge impact.

It’s not that good things didn’t happen in 2008. I think the reality just set in pretty hard that it’s going to be a long, uphill battle. I feel like everytime we’re making some progress up this ‘autistic mountain’ we get knocked down a bit. We inevitably get up and dust ourselves off and start trekking upward again, but we have some bruises and scars to show for the fall.

I was very hopeful at times in ’08 when we thought we had really cleaned up Josiah’s gut and we were beginning chelation. But we eventually had to stop the chelation and now we’re dealing with yeast issues again. We’re hopeful that some changes to Josiah’s diets will bring great improvements this year. I’d like to say that I’m totally hopeful and excited to start some new changes, but frankly I’m just tired and I don’t have the wide-eyed hope I once did.

So I guess here’s some things I’d love to see happen in 2009….

–Josiah responds well to any dietary changes we make. He has such a limited diet now that I can’t imagine having to refine things even more, but we’re hoping that once the gut starts to heal, that he’ll crave the good foods his body needs. It would be good if this worked on me too…I could definitely stand to crave good foods. This holiday season has really added a pound or two to my six pack abs.

–I hope those above-mentioned dietary changes produce great results for Josiah. Who knows where he’d be if he hadn’t been on the GF/CF diet the past year, but he may even go farther with a more specialized diet.

–I’d love to see an explosion of language come from Josiah’s mouth. It’s so hard knowing that the words are there, but that he just can’t/won’t say them. I know it wouldn’t solve everything, but to be able to converse with him would make things a little easier. I so badly want to hear that little voice and know what he’s thinking. I can tell that a little jokester is lurking inside him and I want to be able to have the conversations with him that all of my friends with ‘typical’ 3-year-olds get to have.

–I’d love to see our new President be a champion for families affected by autism. It would be great to see all 50 states require all insurance carriers to cover therapies such as ABA. It would also be great to get insurance coverage for supplements even if they’re natural. Why we can get coverage for any old drug but not a natural solution is pretty crazy. Also, let’s get some funding dollars thrown in the right direction. Quit wasting time looking for the elusive ‘autism gene’ and fund things like what the Autism Research Institute is doing. Let’s clean up  the vaccines and give creedence to those who dare suggest that vaccines, environmental factors, and foods could be playing a part in all of this.

–I’d also love in 2009 to see fathers of autistic children connect with each other. I’m sure this is happening somewhere in America, but frankly I’m not finding it. There seems to be many websites that help mothers connect, but not the fathers. I know that too many fathers flee the scene or are just too busy working to pay for therapies, treatments, etc., but it would be great to encourage each other.

–I guess overall I would just love to see 2009 be a year of restoration and recovery for this family. I want Josiah healed, and I want to feel alive again. I feel like autism is besting me in this battle and something has to give. I truly believe that 2009 will be a very important year for my little family. If we can make it through this one, we might just make it through anything.

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Louder than Words

December 22, 2008

When I first read the book “Louder Than Words” by Jenny McCarthy it took me a while to fully grasp the meaning of the title. Well I learned it doesn’t take long with an autistic child what that phrase really means.

We’re fortunate that Josiah is verbal. Many parents of children with autism never get to hear their child speak or they have to wait many years. Josiah mainly dishes out one word statements or the occasional two-word phrase. My wife & I are so thankful for that but we’re also so desperate to hear that sweet little voice of his say more words to us. You can tell that the words are swimming around in his head, but at this stage he’s not quite sure how to get them out.

There are days where I can accept that at least for right now, we just have to be thankful for the words we do have. But I’d be lying if I said I wasn’t dying inside to hear him say “I love you Daddy!” I think most people who have kids without autism don’t realize what a gift their child’s language is. I’m sure there are those days where you wish the kid would be quiet for a second, but to be able to have a two-way conversation with your child must be an amazing thing.

Recently it’s been a challenge for us when we can tell Josiah isn’t feeling well. We’re still at the stage most people are with an infant where we can’t just get an easy answer from him. Is your tummy hurting? Are you just tired? Are you in some kind of pain? Instead of getting some sort of answer, we’re left to play a guessing game.

Anyway, to make a long story short…I do understand now what it means to have a love that is louder than words. I would give anything to hear more words, but at the same time I know Josiah loves me by his actions. Whether it’s a smile or just by him wanting me to be in his presence I know that he loves me. Just last night I went to give him a hug and kiss goodnight and his little arms wrapped around my neck so tight. He pulled his little cheek next to mine and for that moment I was reminded of the special bond Josiah and I share. I pray to God that someday we’ll have a conversation together, but for now we’ll just have to let each other know we love each other in a way that is louder than words.

The Less He Eats, The More I Eat

December 5, 2008

For the past couple of weeks, Josiah’s appetite was severely low. He’s been a picky eater for as long as I can remember but at least there were always a few staples you could count on like chicken nuggets, snacks, etc. But for a couple of weeks he had been eating barely anything and we were getting pretty worried.

My wife & I did joke that a good title for a blog post would be the title you see above. The less he eats, the more we eat! It’s funny that even on our darkest days we still try to find some humor and we at least figure that if nothing else we’ll get a blog post or two out of our troubles.

Fortunately Josiah’s appetite has returned. We had suspected that decrease was possibly due to the Diflucan he was recently taking for his yeast issues. The dr. advised us to take him off it and see what happens. Well just a few days after going off it, he became ravenous and seems to be making up for lost time with his eating.

He’s even taken to eating some foods he never really has before. My wife put a very tiny hamburger patty on his plate one night more for show than anything. We figured if he just even acknowledged its presence that was a small victory at this point. But lo and behold, he actually ate the darn thing. And he’s eaten more ground beef this week than he has in his entire life! I’m not sure if he’s just still so hungry after his little hunger strike, but we’re so relieved to see him eating something that will provide the valuable nutrients his little body needs.

That’s been great news for us. The bad news is that we still have to stay on top of the yeast issues. We’re not too anxious to start the Diflucan right away since we know the effects it has. We’re really trying to read up on what the best type of diet for Jo Jo will be. He’s on the GF/CF diet, but a lot of our reading is indicating that’s only part of the battle. We haven’t implemented anything yet but we’re reading some interesting books that seem to be helping lots of kids…

“Gut & Psychology Syndrome”  by Natasha Campbell-McBride.

“Body Ecology Diet” by Donna Gates.

“Nourishing Hope” by Julie Matthews.

We’ll see what these books have to say and then see what we can do about getting the right foods into our little son’s body. I suppose I would benefit from a few dietary changes myself. Just because my son has some food issues, doesn’t mean I need to overcompensate with huge helpings of fast food and ice cream!