Friday, February 13, 2009

gluten and casein free

Well, it's been a long time since I've posted anything. It has been a whirlwind of activity combine with lots of waiting! But we are getting somewhere. There's lots I could share about the journey so far, but this week we have been somewhat focused on putting Lewis on the gluten free and casein free diet (GFCF) that I'll choose to write about that first.

Lewis has historically been a very picky eater so this diet was the last thing I've wanted to do. His favorite foods are ones of the cracker and cereal variety--hard crunchy and made mostly of flour! But the transition has been relatively easy. We had taken him off of regular milk a while ago, and have settled on Rice milk for the moment because it is cheaper and soy free. For now we are avoiding anything with gluten: wheat, oats, barley and their derivatives, soy and milk products. That eliminates a whole lot of things. The foods Lewis no longer can eat in our pantry: cereal bars, Goldfish crackers, graham crackers, animal crackers, pretzels, oreos, Cheerios, Kix cereal (though there is a version I think he can eat) and chocolate; and from the fridge: yogurt and chicken nuggets.

He still can eat fruit, veggies (he will only eat sweet potatoes and squash pureed), beans (his current fave), marshmallows, Smarties, most potato chips, french fries, meat (chicken nuggets are the only meat he has eaten lately), and of course GFCF versions of things.

We got GFCF versions of Cheerios and Kix, called PerkyO's and Gorilla Munch, which he seems to like okay. He's eating some Veggie Chips from Trader Joe's that are really good and provide some veggie intake. Most notably though he is eating homemade chicken nuggets. I'm dipping chicken in cornstarch, then in egg, and finally rolling it in crushed potato chips with some herbs and spices which I then fry in olive oil. They taste great, but are different and the breading slips off fairly easily. Still, in front of his video Lewis doesn't seem to mind.

We are making sure he eats beans every day too, which should help with his protein intake. All in all I think he is actually eating more than he did before.

The thing that really frustrated me though, was that in the paperwork from my doctor encouraging us to take on this diet, all kinds of other things were included as stuff to avoid too.

Now you may have gotten this far and are thinking--why GFCF? What is the point? In kids with ASD (autism spectrum disorder) the enzymes in gluten and casein are thought in many cases, to not get broken down properly in the body. What results is an opiate effect which leaves these kids in a sort of "high" state where their brains can't function properly or learn well. It would be like walking around drunk all the time and trying to learn to talk. Many of the self-stimming behaviors are thought to be a result of this altered state and so 65% of kids with autism actually show great improvement when gluten and casein are removed. Many make great gains verbally after starting the diet.

So in my mind I'm thinking--okay, it will be tough, but we can do this. It's expensive, yes, but it could be well worth it! But then I started reading that we should avoid sugar, and pre-packaged chips and every preservative in the world, and I almost gave up. This info even said that apples and bananas are the worst of the fruits (due to sugar levels) and should be limited. That was really discouraging because Lewis most regularly eats bananas mixed with natural applesauce, or grapes. He tolerates other fruits sometimes, but it is much harder to get him to eat those things.

We don't make a lot of money so it is a stretch for us anyway. But I kept thinking that if gluten and casein are the real problem, why make it so much harder by adding all these other things to the list? It would be like telling a drug addict that along with LSD they needed to give up coffee, fast food and chocolate too. Just knock out all your bad habits at once! It makes sense that all organic foods are best without dyes or preservatives.....it's just not possible for us right now. Lewis has to eat SOMETHING!

So, all this to say, we are gluten and casein free, and we are avoiding soy as much as possible (trace amounts of soy are okay by me at this point) and I feel like we are doing great. There are a host of supplements we'll be trying in the near future too, along with our ABA program and hopefully the combination will make a difference.

Tuesday, December 23, 2008

moving on

So my last post was me sharing my anger with the world. Forgive me! I actually sent a letter to "Ed" apologizing for offending him and explaining a little more of where we were coming from. Hopefully we can all move on with our lives!

Last week, our new speech therapist came. She seems great. I was skeptical because she was the only one available and we usually get to pick from 20 or so people. When I have no option like this, I have to believe that maybe God picked her for us. She came in on Friday and asked a lot of questions about Lewis and the type of therapy we think he needs. We told her about our plan to get an ABA program in place and she offered to use the program during her appointments! I was thrilled, and even shocked that she is so accommodating. She has a cousin with autism so she is familiar with what we are going through and even applauded us for making an appointment with a DAN doctor. These are docs who test kids to see if they have food sensitivities or could benefit from biomedical interventions. Most regular doctors or therapists think all that kind of thing is wacky (even though there is lots of evidence to show it works), so I was really excited that she seems to be a kindred spirit.

She knows that biomedical stuff (gluten/casein free diet etc.) does not work for every child, but it works for enough of them that it is worth a shot.

It was really refreshing to not have to fight with someone during a whole session. What a relief! So we are on our way to something good, we hope.

This is a busy time of year, and it can get very stressful navigating kids through all the events without having a moment to slow down to reflect and ponder our Savior coming to earth as an infant of all things. What a beautiful picture of God's creative and tender heart! I don't have any inspiring words, but hope that you enjoy the season, and welcome in a new beginning in 2009. As my sister has been saying, "2008 can't be over soon enough!" We're ready for a new year. Merry Christmas!

Wednesday, December 10, 2008

a little vent

Rarely do I find myself extremely angry, but when it comes to my kids it is more likely to happen. If you are a mom you know what I mean. I'm not talking about getting angry AT my kids, but in relation to someone else involved in their lives. In this case I'm talking about our most recent speech therapist (SLP). If you have followed our blog at all, you know that Lewis is basically nonverbal. He has no words, and only a few sounds. Since we started with Kentucky's early intervention program last year, Lewis has fewer sounds, but we are starting to recover some of them.

You may find it hard to believe that indeed we have had speech therapy consistently over the last 14 months. You'd think we'd be making more progress, right? Well, yesterday at the end our speech therapy session we were informed that it would be the last with this SLP. We had already started the process to find someone new, but this guy, we'll call him Ed, took it upon himself to voice his irritation with us, and me in particular, for questioning his techniques and "yelling" at him during last week's session.

He thought he was making great progress with Lewis, but that in 21 years of experience had never had a parent yell at him before. Let me explain the scenario: Last week, Ed was working with Lewis and getting him to identify body parts on a picture of a baby in a book he had. He was then trying to get Lewis to touch his own nose or whatever it was. He'd say, "Touch YOUR nose!" very loudly, but Lewis was focused on the book and seemed to not even register was Ed was saying. After this went on for several minutes (and we only have 45), I said rather loudly, "Try taking the book away so that he can't get to it and ask him again."

Ed seemed irritated by my suggestion, but he did it and it worked at least once (though he said yesterday it didn't work at all). But yesterday he said I yelled at him, and that we didn't seem to have confidence in what he was doing with our son. Well, gee, why would we not have confidence in his techniques?! He's only been getting paid $80/hr. to play with our child without figuring out a way to encourage him to produce a single new sound....or even to more commonly use the few he has. He finished his mini lecture with something about how after his 21 years of experience in working with kids that of course he is an expert on what kids like and need and that he knows what he is doing yadda yadda yadda.

Funny, because a month or so ago I took one of the many toys Ed brought....with Lewis squealing....and said, "Do you want it back? Say 'guh guh.'" Lewis responded, "Guh guh!" and Ed said, "Let me try that." He then repeated the exercise and Lewis vocalized again. When I, a lowly uneducated parent, have to show my SLP how to get my child to make sounds, it's disappointing to say the least. But there again is the factor in regard to autism--I know my own child. Autistic kids learn differently, and not just from normal kids, but from other autistic kids too. There are ways to teach them that tend to work, but a parent's knowledge should be used and abused to make the most of whatever techniques are tried.

One last irritation with Ed. A few months ago, when it was becoming obvious that Lewis had a bigger problem, I asked Ed about techniques with autistic kids, and if we got such a diagnosis would he do therapy differently. He said no, that he would do exactly the same thing, and almost belittled our desire for a diagnosis saying that parents just want something to hang their hat on for blame or whatever. The one bright spot in getting a diagnosis, in Ed's opinion, was that we would qualify for more services so that professionals could help our child more.

I said, "Well, isn't the point of First Steps to train parents so that we can figure out ways to teach our kids when the therapists aren't here?" He said it was partly, but that in his experience that parents don't have time or the expertise to worry about such things, and that we really needed to get more therapy time in order to make a difference. To which I said, "I am here, and I have the time and would love for you to show me things I can do when you're not here." But Ed had nothing to offer.

Other parents have laughed with me about the worthlessness of SLPs with autistic kids. I'd say there are really good ones out there who do more than blow bubbles and yell "Pop!" but they are few and far between. We picked a new one today, and we haven't met her yet, but I hope and pray that she is good enough to pick up on Lewis' interests or at least listen to us when we try and help. But I will also do my best not to 'yell' at her either. I certainly did not love Ed's practices but I did not mean to offend him or hurt his ego. Experience is best utilized when the one using it is willing to adapt to the situation at hand. Hopefully we'll all learn something from this somehow.

Wednesday, November 19, 2008

spiritual development disorder

It has been a long time since my last post. We have been researching and waiting and last week we got our answer: Our son has autism. It has been a sad journey to this place of reality that our child has a real problem, and one that could be with him his entire life. We have so many questions--Will he ever talk? Will we ever be able to communicate with him on any kind of deep level? Will he ever understand God or spiritual things?

Through it all, I wish I could say that I've been holding steadfast to my faith and trusting God at every turn. I'm sorry to say that my response has been less than faithful. It is so easy to trust God with other people's problems, or even my own problems....but when it comes to my child, it is so much harder for some reason. I want him to have a life, and to be successful and accepted by his peers. It causes me much heartache to know that he is so different and will most likely endure much hardship in his future. It is more painful to watch than to endure yourself sometimes.

That being said, I have been reading so much about autism and the disorder that it is in communication and social settings. It frustrates me so much that Lewis can't understand when I'm trying to do something good for him (take him to the park etc.) and because initially he has to wait or we have to get in the car, he throws a fit and protests, unable to be quiet and listen to me explain what is going on. Sometimes I even shout "I'm trying to make you happy!"

Today I realized that I'm the same way with God. I was preparing for a Bible study the ladies in my church are doing about grace. One scripture reference was Philippians 3:8 where Paul has been bragging about his staunch righteous in keeping the law. He writes starting in vs. 7--
"But whatever was to my profit I now consider loss for the sake of Christ. What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish that I may gain Christ....."
Basically Paul is saying that we can try to have a righteousness on our own from our good works which will always fall short......OR we can set all of that aside and come to Christ through faith in his good work done on the cross and gain HIS righteousness.....merely by admitting we can't do it on our own and that we NEED him.

Now that is profound. But what struck me was that little part about the surpassing greatness of knowing Christ. Somewhere in my despair I forgot that Christ is a person. He is a relational being who gave up all so that we could know him. I've been shaking my fists in the air asking "why?" which is understandable, but I've been thinking about God like some passive monarch sitting in heaven saying, "Oh look, Shelley's been impatient. Let's give her a real challenge and let her build some character." And I'm embarrassed that I have given in to such lies.

So while Lewis has a social and communicative development disorder, I have a disorder of my own, and one that needs fast attention because I'm going to need him desperately in the coming years. Thank God that He is a gracious and forgiving HEALER. I know he can heal Lewis and I'm certain he can heal me. Will he heal Lewis? I don't know. I have to live with the reality that Lewis may never call me 'mama' or be able to pay his own bills. But either way, Jesus is a person who wants to walk with me through this and give me the strength to get through each day. And more than likely he has a plan that is going to make me better in the end.

It's hard to lay it down and believe that someone else has more at stake here. It's hard to believe Jesus loves Lewis more than me, but I know it's true. And there's nowhere else to go. Only Christ can bring healing, spiritually or otherwise.

Obviously there will be much more on this to come......but this is a start.

Monday, October 13, 2008

CHAT

We have recently 'celebrated' our year anniversary enrolled in our state's early intervention program called First Steps. Lewis is now 27 months old, and has made great strides in his gross motor development though he still could use improvement there. Our big concern continues to be his communication skills. He is currently functioning at a 0-10 month level, and honestly we are hearing a better variety of sounds coming from our 3 month old. After months of worry mixed with hope that all the well-meaning friends and family might be right that Lewis is really fine and would catch up because plenty of people don't talk until they are 3 or 4, right? We have heard every story of every late talker in a reasonable radius (and even Albert Einstein) who happened to start talking late, but when they did they talked in sentences clear as day. And we appreciate people trying to be kind and trying to encourage us, but unfortunately we are needing real answers to a very real problem.

So I've been doing a lot of research. I read a book recently called The Late Talker which outlined several possible reasons why children have speech delays. This book focused on apraxia, a condition where a person knows what he or she wants to say but can't get it out. It is a muscle condition where the brain is unable to translate a desired message into the physical response needed to produce words, sounds or motions. We related to some of the stuff in this book, but then moved on to Lynn Hamilton's Facing Autism.

The author's son has a lot of similarities to mine. But what I appreciate about this book is her clear outlining of diagnostic tools for autism. I am disappointed to say that neither of our therapists, our pediatrician or anyone else ever asked us anything related to these items when trying to figure out what is wrong with Lewis. We heard things like "Does he make eye contact?" or "Does he show affection?" which could relate to autistic tendencies, but are not central to the issue. We don't know for sure if our son is autistic, but because of these tools, we should have a diagnosis in the near future through an intense level evaluation in Louisville.

In the meantime, I wanted to document some of this stuff for our own use, but also to let others out there know what to really look for in your child or other kids you are around so that we can really be helpful to one another and not give false hope.

One very helpful tool is the CHAT (Checklist for Autism in Toddlers) that was developed by a group of British doctors and can be used on children as young as 18 months. The key points of the test are A-5, A-7, B-ii, B-iii, and B-iv (marked by * below). If a child fails ALL the key points, there is an extremely good probability of autism.

Section A: Ask parent

1. Does your child enjoy being swung, bounced on your knee, etc.?
2. Does your child take an interest in other children?
3. Does your child like climbing on things, such as stairs?
4. Does your child enjoy playing peek-a-boo or hide-and-seek?
5. Does your child ever PRETEND, for example, to make a cup of tea using a toy cup and teapot, or pretend other things?*
6. Does your child ever use his/her index finger to point, to ASK for something?
7. Does your child ever use his/her index finger to point, to indicate INTEREST in something?*
8. Can your child play properly with small toys (e.g. cars or blocks) without just mouthing, fiddling, or dropping them?
9. Does your child ever bring objects over to you (parent) to SHOW you something?

Section B: GP (Gen. Practitioner) or other health personnel's observation:

i. During the appointment, has the child made eye contact with you?
ii. Get the child's attention, then point across the room at an interesting object and say, "Oh look! There's a (name of toy)!" Watch the child's face. Does the child look across to see what you are pointing at?*
iii. Get the child's attention, then give the child a miniature toy cup and teapot and say, "Can you make a cup of tea?" Does the child pretend to pour out tea, drink it, etc.?*
iv. Say to the child, "Where's the light?" or "Show me the light." Does the child POINT with his/her index finger at the light?*
v. Can the child build a tower of blocks? (If so, how many?)

Another tool in Hamilton's book shows that impairments in social interaction and communication, and repetitive patterns of behavior are the hallmarks of autism in children. If you get online and look around you may find a million different lists of symptoms for this disorder and it can be really confusing. Hopefully these tools will help calm fears of some and drive others to get much needed help.

Ultimately I am learning that as a mom, I have the inside track on my own child. If my gut is telling me there is a problem, there probably is something to it. We all want to believe that doctors and therapists know more than we do, but in seeing a child for a few minutes every few months or even an hour a week, the view of these outsiders is extremely limited compared to what you and I see every day with our kids. Most of the time there is really nothing to be worried about. The problem is that issues will go undetected if we are not vigilant to seek out answers that may be hard to hear. The good news is that the sooner something is discovered the sooner the child can get the help he or she needs. If it turns out to be nothing, great! But we should not be satisfied until we know for sure.

Saturday, September 27, 2008

what i've learned, vol. 2--breastfeeding

Okay, so onto everyone's favorite topic! Breastfeeding is hard and doesn't come as naturally for everyone as you might think. After having a tough time with Lewis the first time around, I was relieved that things have been very smooth with Owen. Here are some suggestions:

--If your hospital will allow it, breastfeed immediately after the baby is born. Lewis was whisked away for bloodwork because he was at risk for Group B strep. It turned out he was sick, but Owen was equally at risk and the hospital staff still allowed me to hold him and nurse him right away. It got the ball rolling for us.

--Avoid bottles, pacifiers and nipple shields as long as possible to avoid the dreaded nipple confusion. Lewis was sent to the NICU right away and given pacifiers and bottles before I was ever able to nurse him. We had to use nipple shields to get him to latch on and it was always a fight to make him work for the milk that he knew he could have more easily (from a bottle). With Owen, we still used a nipple shield at first to help him latch on, but would remove it mid-feeding so that he would not become dependent on it. The Humana nurse I mentioned in the last post told me that nipple shields make it really hard for babies to get milk because they have to suck twice as hard. This can effect supply and make feedings take much longer.

With Owen, we stopped using them completely after a month or so and his feedings have gone from being 30-60 minutes to more like 20 minutes since then. We waited to give him any bottles of pumped milk until he was over 2 months old too. With just breastfeeding, he has gained much more weight than Lewis did initially and at 3 months is close to 15 lbs. The other benefit is that he is sleeping through the night (7-10 hrs).

We did introduce the pacifier after a week or so, and it has enhanced his ability to sleep well!

--Feed on demand. We let Owen decide when he is hungry and feed him whenever he needs it. He has been such a happy baby! After the first couple of weeks he basically adjusted to a 3 hour schedule, but occassionally has a day where he eats much more (every 2 hours). Lewis started out on a strict schedule at the NICU and it made life very hard on us when we got home. Every baby is different and may need to eat more or less often depending on size, growth spurts etc.

--If you have trouble, contact a lactation consultant or experienced friend for help. This time I still took advantage of LC's at the hospital and afterward to make sure we were on the right track. Most women should be able to breastfeed, but it may require the guidance of professionals!

--It's like riding a bike. If you've had a baby before and nursed successfully, it should go even better the 2nd time around. I have been much more confident with Owen because it's not something totally foreign like that first experience. It's different to go from nursing a 16 month old to a newborn for a lot of reasons. But it all comes back to you!

Sunday, September 14, 2008

what i've learned, vol. 1--swaddling

Okay, so it has been a long time since my last post. I'm starting to wake up now that our second baby is sleeping through the night. We've been learning a lot as parents of two kids, and so I'm hoping to chronicle some of that stuff on the blog.

The first thing is swaddling. With our first baby, Justin (my husband), swaddled in rare form at key moments to calm Lewis down. But this time, I was up in the middle of the night often trying to get Owen back to sleep and having trouble. Owen has been a relatively easy baby with only a few really fussy instances. Still, in the middle of the night when you're exhausted and in a daze, you just want that baby to get back to sleep ASAP.

We were enrolled in a program through our insurance company that got a nurse involved in our prenatal care. Basically she called about once a month to check on my progress and answer questions. It was actually really nice because she could answer questions I was embarrassed to ask anyone else as a second time mom. This nurse sent me the DVD called THE HAPPIEST BABY ON THE BLOCK, by Dr. Harvey Karp, which turned out to be very helpful in regards to the whole sleep issue. Dr. Karp recommends the swaddling thing as part of his "4th trimester" theory. You want to recreate the womblike atmosphere, and let's face it--babies are pretty snuggly trapped at the end of pregnancy.

We found that the swaddling trick really worked for Owen. That coupled with background noise provided by a fan, which Karp also recommends. Owen has been sleeping through the night for a couple of weeks now. He's going 8-10 hours or more now at 12 weeks, and it is fantastic! We still swaddle Owen at night with one arm out. He falls right to sleep once he's in position. It's wonderful. Lewis started sleeping through the night at about 13 weeks, and Owen beat him by about 3 weeks using Dr. Karp's recommendations. Just something to think about for those of you with newborns or pregnant!

More to come......