Our church recently did a video on our family. They were doing a series called “Is It Just Me?” and over Christmas they did the final message called “Is It Just Me Who Struggles To Believe?” The message ended with this video that tells our story. Here it is below if you’d like to watch it. If you want to watch the entire message to see the context of how it fit in, you can watch it at this link. Just look for the “Is It Just Me” series and watch the Christmas service.
It’s easy when you have a child with autism and he’s the only child you have to live in a bubble. We’re not around a ton of kids except for when I drop Josiah off and pick him up from his school. The kids I see at his school all have autism, so it’s not too emotional for me. Back when Josiah first started going there it was hard to see other kids with autism, but now that’s all I know and I’m used to seeing kids who generally don’t give you much attention and don’t always say a ton.
So it really hits me hard when I’m in a place surrounded by ‘typical’ kids. This happens a lot during the warmer months when we’re at the park, but now that our midwestern winter is bringing us sub-zero temperatures, we don’t spend a whole lot of time outside. Sure we go to the mall or to stores, but I don’t have to be around kids too much there.
But this morning I had an experience I guess I hadn’t prepared for and it was like a punch in the gut. I’m a reporter and I do a fair amount of stories on our local businesses. I was assigned to do a story on a Montessori preschool that had just moved into a new building. I should have known that this would have been a tough experience for me, but I wasn’t sure that we’d be able to film any of the kids, so I was prepared to just interview the school’s director and get a few shots of some empty rooms and be on my way.
Well as my ‘luck’ would have it, all the kids there had already been approved to be on camera. I hadn’t even entered the building yet, when I got my first taste of what was to come. We were walking to go inside when I looked and saw a little guy standing by the window (he may have been a year old at the most). He locked eyes with me, smiled, and waved. I don’t know that Josiah has ever waved to me.
We go in, do the interview, and then we travel from classroom to classroom to get some footage. At every stop there are ‘typical’ kids doing all the things my heart aches for Josiah to do, and these kids do them effortlessly. Without any effort on my part these little tykes would look at me, smile, point at me, talk to me, etc. There was one point where a crowd of about 10 or so kids around Josiah’s age crowded around me as they were getting ready to leave for another room. They circled me like vultures and kept looking up at me and talking to me. Now don’t get me wrong…I’m glad these kids don’t have autism and that they look healthy. But it just seems like a cruel joke that I pray so hard for my own child to be able to have a ‘normal’ life and all I get is teased by the sight of all these other kids. They were cute and all, but as they kept circling me I felt like they were little tormentors bent on playing with my emotions.
It made it even harder that it happened today because when I had dropped Josiah off this morning it took a few minutes before he’d even say good-bye to me. We’ve been working on this for so long and some days he does it better than others. Today he just kept looking down and his therapist kept saying ‘Say goodbye to Dad!’ He finally whispered ‘bye’ without looking at me. That was good enough for today. I left feeling a little sad, but it wasn’t too different than any other day. Some days I don’t even get the whispered ‘bye’ so I take this as a little victory.
But to go from that to what I experienced with all these kids at the preschool was just too much for my heart to take. I just wanted to sit in a corner and bawl or scream or something. But I figured that wouldn’t be an appropriate action for a grown man in a preschool, so like I’ve learned to do, I just buried the hurt deep inside and faked a smile or two.
Will it ever get any easier? I’m so proud of my son and I know that none of this is his fault. But it still doesn’t make it any easier to have to work so hard for the most basic things while I feel like everyone else gets what they dreamed of. I guess I just have to cling to the hope that someday our time is coming and we’ll get to experience these things. I’m just scared some days that I’m fooling myself and our time will never come. It’s hard when you know you’re doing all the things you’re supposed to do to get results (aba therapy, biomedical stuff, etc.) and some days you don’t feel like you’re any better off than you were months ago and the rest of the world keeps running circles around you.
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.
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.
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!
As awful as it sounds, there are those days where I don’t feel particularly thankful for anything. I feel shortchanged and can get extremely jealous looking at other people who are living the life I thought I would. I know there are tons of people who have way more challenges than I do, but there is no question that my life would be so much easier if I didn’t have to deal with autism.
But one thing (or more accurately person) I am always thankful for is my wife. Now I’ll try not to get too mushy here, but our little family would be sunk without her. Fathers definitely play an important role in an ‘autistic family’ but as the title of the recent Jenny McCarthy book suggests, it’s the ‘Mother Warriors’ who are the ones getting things done.
Not convinced that my wife is a Superwoman? Well let’s see….she works a full-time job where she has lots of responsibility and expectations, she raises a 3-year-old which can be a challenge for anyone even before you add in the autism to the mix, she has to put up with me on a daily basis (no small feat), and keeps the house going, meals cooking, etc.
I’ve seen her shine this past year since we received the autism diagnosis. She’d probably deny it and I know she feels like she’s always coming up short. But beneath that tired, worn-out exterior you can see a light in her that is shining so brightly. The biggest confidence I have in our hopeful recovery of our son is that my wife is in my life. She’s always scouring books and the internet to make sure we’re not missing anything that could help our son. She goes to the doctor appointments armed with a list of questions to make sure we’re addressing everything with the care our son gets.
And to top it all off, with the little free time she has she’s always searching for other Moms of autistic kids to connect with. It’s her sincere desire to be able to help those in need. At this point we’re far from experts, but with the year we’ve put in, we can certainly help others who are just starting out too. I have no doubt that when we recover our son, she’ll still be working tirelessly to help those other Moms who are scared and have no idea where to turn to for help.
I have no doubt too that someday she’ll write a book. She kind of laughs when I mention that now and we’ve had a few people mention that we should both write books someday. I certainly wouldn’t be against that but I know for a fact she has the drive, determination, and talent to see something like that through. I told her I’d be willing to write the foreward to the book if she needs me to do something.
So during this week of thanks, I just want to thank my wife. It’s been an emotionally, physically, and spiritually draining year, but without her they probably would have sent me off to the looney bin a long time ago. She’s definitely a ‘Mother Warrior’ and there are two guys in her house who love her very deeply (me & my son that is in case you weren’t following, we don’t have any other guys at our house).
Ok, so I really have not been a prolific blogger as of late. I guess I could throw out some legitimate excuses…no one will blame a busy father of a 3-year-old with autism for not taking the time to write in his blog on a regular basis. Some days I do actually have a free moment or two, but just don’t feel like writing. Or other days the only things I can thing to write about are very depressing. Not that expressing some raw emotion is a bad thing, but I like to write some posts that at least have a measure of hope.
It’s so easy for me to get down in the dumps and start thinking that everything in my life is going down the tubes. People will say ‘You have so much to be thankful for!’ and depending on my mood I may be inclined to just roll my eyes. But you know, it is true. Even though every day brings some sort of unexpected challenge, I do have a lot to be thankful for.
Being that Thanksgiving is just a few days away, this seems like a good week to write some posts on what I am thankful for at the moment. I don’t know if Oprah is a faithful reader of this blog but she’d be happy to see that this week my blog will turn into an ‘attitude of gratitude’ journal or whatever she calls it.
Right now I am so thankful for the renewed interest my son has in me lately. Like most little guys his age (autism or typical) he has always favored his mommy. I know he loves me, but when push comes to shove, I’m usually the one that gets shoved out of the way. I would try to force my way in there to be part of his little world, and he’d let me be close by, but most days I could go somewhat ignored, especially if my wife is anywhere in the vicinity.
But for some reason these last couple of weeks, Josiah has taken quite a shine to me. Even with my wife in the same room, he’s coming up to me, grabbing my hand, and taking me on all his little adventures. It started innocently enough one day when I saw an exercise ball nearby and I picked him up and started bouncing him on it. He got such a big kick out of that and pretty much everyday he brings me down to the basement to play ‘bouncy’ as he calls it. I just love the look of sheer delight he gets on his face when we play together and for once I feel like I’m playing ‘correctly’ with him. He asks for something, I deliver. We both have fun. It seems so simple yet it has brought me new life.
Even more amazing than the bouncing is that Josiah now will also request for me to come into his room to sit on my lap in the rocking chair and sing some songs with him. Now this might not sound like a huge deal, but in our home this is pretty big stuff. His world pretty much revolves around songs, so if you get to be the singer it’s pretty huge. He’s always loved doing this with my wife but I can only remember a couple of times that I got the coveted position in the rocking chair and it was always when she wasn’t home for an evening.
I love the way he snuggles up to me on the chair and wiggles with delight when I sing his favorite songs. Right now the Christmas songs are pretty popular. I feel like a DJ spinning some tunes at a club. I start with a little ‘Jingle Bells’, or as Josiah calls it ‘Jingul Bulls’ and then move to a little ‘We Wish You A Merry Christmas,’ ‘Deck the Halls,’ and maybe a little ‘Rudolph’ if time permits.
So for this holiday week I first give thanks for my son’s new fondness for me. I pray that it lasts because it has done my heart so much good. And it’s the most use that exercise ball has ever had in our house!
There are so many challenges that autism brings to a family but probably two of the biggest ones for us (and most families with an autistic child) is eating and sleeping.
Josiah seems to go through phases where he will sleep well but the eating has always been a struggle. I guess we’re fortunate that he does eat some things because I know some people have kids that need help just to learn how to chew. Josiah can certainly do the mechanics of eating but whether it’s the textures of foods, the taste, the smell, etc. he sure is one picky pete!
He’s never had a wide variety of foods that he would eat, but at least in the past even if he was just eating chicken nuggets every day you knew that he was getting some fats and protein. Well unsurprisingly he has tired of the few meals he does eat since he has them every day. He’s been so picky the last couple of weeks that my wife & I are worried he’s going to waste away before our eyes.
Fortunately he does take his supplements so we know he’s getting valuable vitamins and some fats from the likes of fish oil, etc. With all the stress we have in our lives, I’ve found myself overeating from time to time over the last year so I guess I’m consuming enough fat for the entire family!
I’m hoping this is just another phase (he’s gone on these ’strikes’ before) and that soon he’ll start eating more again. It definitely doesn’t make things easier when you have a kid on the gluten/casein free diet either. But it wouldn’t really do us any good to have him eat things that will screw up his system, so I guess we just have to keep trying to get him to eat the things he can.
As for sleep….this isn’t always an issue but lately he’s been in the habit of being awake in the middle of the night for a couple of hours at a time. I suspect he may wake up because he’s hungry (go figure) but other than that there’s not much we can do but wait till he falls back asleep.
With our crazy schedules my wife and I seem to rarely have time to watch a movie, read a book, etc. I joked this morning at like 3 a.m. that we should use these middle of the night times to get caught up on these things. We’re up anyway, so we might as well finish watching something. But that’s easier said than done when you’re feeling like a zombie!
So if you’re looking for a gift for me for the holidays (and I imagine you all are) please just give me the gift of a good night’s sleep and if you could get Josiah to eat his vegetables too that would be a bonus.
For the second year in a row, Josiah is a superhero. Last year it was Superman, this year Batman. A little piece of advice to parents of autistic toddlers….these pajama costumes are quite handy. We’re lucky some days to get Josiah to wear his shirt, pants, and coat, so I can’t imagine him wearing some elaborate, bulky costume. But he likes wearing these as they double as pj’s and are super comfortable. The cape in the back comes off with velcro too.
As you can see, he’s got to be about the cutest little Batman you’re ever going to see. Props to my wife for the little design she did with this picture.
I have to say to that it’s fitting Jo Jo is usually a superhero for Halloween. I think he’s something of a superhero everyday. He keeps a smile on his face even though he has to work so much harder than other 3 year-olds and we expect so much more out of him than any little guy his age should have to.
I hope he enjoys his day (I’m sure he’ll be wondering why everyone at school is dressed so funny today). And hopefully he’ll get a tasty treat tonight to enjoy (albeit in a gluten/casein free variety.)
It’s been a pretty good week overall so far. Things got off to a bit of a rocky start when Josiah was up in the middle of the night early Monday for almost 3 hours. We were all dragging on Monday.
My wife was giving Josiah a bath Monday evening then and while she was doing that, I figured I had a couple of minutes to put my feet up and relax. I had just laid down on the couch and was starting to put a blanket on when I heard her say, “Oh no!”
I knew right away from here tone what had happened. Josiah had pooped in the tub. He’s never done this before, but I guess after being married to my wife for over 10 years, I’ve learned to read between the lines. I know what the “Oh no!” sounds like when he’s peed in the tub or if he’s trying to climb out, etc. But this one was just different enough that I knew he had gone #2 in the tub.
Sure enough that’s what happened. Not to pat myself on the back or anything, but I acted pretty calmly and swiftly. Without going into too much gory detail, I grabbed two plastic bags, used one for grabbing and the other one as a receptacle.
This was a decent idea, but I was having a hard time grabbing the “nuggets.” So I said out loud, “Screw it! I’m going in!” And then I just grabbed the remaining culprits with my bare hand and put them into the bag. My wife was pretty impressed.
With all the other stresses we have to deal with, I guess getting my hands a little wet and dirty isn’t too big of a deal. And I can’t fault my son. When a guy’s got to go, he’s got to go.
