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.

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.

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!

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......

free caffeine

Psalm 127:2-- 2-- In vain you rise early and stay up late, toiling for food to eat— for he grants sleep to those he loves.

For some reason I have found Mountain Dew left in shopping carts twice recently. The first time was at Target a couple of weeks ago. I found a 12-pack of the caffeinated beverage on my way in. Seeing that it had obviously been paid for, and being extremely tired from getting up to feed Owen every night, I claimed it for my own. Then this week after doing my regular grocery shopping at Kroger, I returned my cart and found a 20 oz. bottle of Mountain Dew Voltage in another basket.

After the first incident, I joked with a friend that God knows how tired I am and decided to bless me with some caffeine. After the 2nd, I am really believing it!

Now bear in mind that I am not a caffein-e-holic. My husband and I own a coffee shop, but I am still careful about how much I consume. Many pregnant and nursing women take a complete hiatus from caffeine. I am not such a person! I cannot drink hot coffee in early pregnancy. It absolutely turns my stomach. The occasional iced latte, I can handle for some reason. But by the halfway point, I have been able to get back into my morning routine and have a cup of coffee in the morning. On occasion I might have some sort of cola-type beverage or iced tea in the afternoon (Sonic's are the best, esp. during happy hour!). But by dinner I am decaf all the way.

I had forgotten how exhausting newborns can be, but luckily the caffeine doesn't seem to stop him from napping during the day. It's getting Owen to sleep initially and getting him back to sleep after the 6 a.m. mark that has been so difficult. Don't get me wrong......I love watching old episodes of the X Files or Wings in the middle of the night, but I love sleep more!

There's this verse in the Psalms about the Lord granting sleep to those he loves. I find myself begging for God to be true to that verse daily. Somehow I make it through each day, but there are moments when it seems impossible. Surely more sleep is just over the horizon.....and cooler weather. Until then, I've got my Mountain Dew to give me a boost. :)

birth story

It's been a month since my last post, and oddly, our sweet baby Owen is now 4 weeks old! My doctor kept saying that if I delivered at 38 weeks with the first one, that likely the second would come at a similar time. He was right! This labor was much better than the first....and more normal, just like I had prayed for.

I woke up on Saturday morning around 8:30 a.m. which was generally when Lewis wakes up. I had breakfast and everything seemed normal. Around 9, I passed some blood during a routine potty break. It occurred to me that this could be the beginning of labor, OR it could be the sign of something bad like my placenta pulling away from the uterine wall or something awful like that.

At 9:15 or so, I started noticing contractions. These were slightly more uncomfortable than the Braxton Hicks contractions I'd been having for months. After having several, I jumped in the bathtub and then called my doctor to get his opinion. Since my first labor was all back pain, I had no idea how long this "early" labor might last. But knowing my history with Group B strep, Dr. Gass sent me on to the hospital to have the nurses take a look. My friend, Mandy, came to sit with Lewis so that Justin and I could head out. We got to the hospital at 11 a.m.

My doctor had called and warned the nurses we were coming, so they quickly took care of us and after determining I was in "early" labor, they called the pharmacy to get my antibiotics ordered. The drugs did not arrive until 12:30 p.m., and so I was prepared to labor all afternoon to get six hours of them in my system. Thankfully we didn't have to wait that long. After several innings of Reds baseball, my contractions were getting harder, and I was getting very dilated. When I arrived I was around 5 cm, and remembering to breathe deeply helped me to keep things moving along!

I was nervous about being in a different hospital to deliver this baby, but the nurse I had was sooo helpful and let me get up and move around even with my IV.

With my first labor, I had a half dose of IV narcotics to get me through the whole experience of giving birth. But when the contractions hit, they were just as painful. So this time I figured that I could make it without anything, and I did, but at their peak I could tell a difference between the contractions with drugs and the ones without! Mainly, there wasn't much of a break between them because the pain lingered for me. With the Nubain I could almost sleep in between contractions. Thankfully, once it got really bad I had less than an hour to endure the bad stuff. On the plus side, I was VERY MOTIVATED to push that baby out. Without pain meds I could feel everything as the baby made his way to freedom. The drugs definitely take the edge off, but there are positives and negatives either way.

Just before 3 p.m. I was feeling pressure to push, and so I never got the next round of antibiotics (they had told me I would get more at 4:30 p.m.). In the end I was so focused on pushing that they had to tell me to open my eyes when the baby came out. My doctor went on and on about how pink and healthy Owen looked.

I felt great after delivery, and despite the fact that Owen was at risk for contracting GBS, they let me nurse right away and hold him for the first hour. He was pretty slimy! I didn't get to do that with Lewis, so it felt so nice to be able to bond immediately after all that hard work. The nurses took him to run their tests, and he turned out to be perfectly healthy with no apparent problems. That was a huge relief!

Giving birth is so empowering. You feel like you could conquer the world. I immediately felt the relief of not being pregnant anymore. It had become exhausting for me, and I can't imagine going a full 40 weeks after having both of mine early.

Since then, we have been adjusting to life with two kids. The baby stuff has been easier overall. Breastfeeding has been much better with Owen. I definitely feel much more confident in my ability in that area. The first time around you just feel so clueless, but Owen and I have had a smooth transition there (though the first few days were still tough). The hard part is just being able to entertain another child while nursing. So far so good.

Owen sleeps as well as Lewis, but we are more tired because we have to get up in the morning and we can't sleep when the baby does unless it is during Lewis' naptime. That part has been much harder. But otherwise we are back into the swing of life already whereas with Lewis I felt knocked out for a couple of months almost.

Hopefully I'll get caught up on sleep soon so and inspired to share more about life with two kids.

Here's picture. He was born 6/21/08 at 3:41 p.m. He was 7 lbs. 12 oz. and 20 1/2 inches long.

impending birth

"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to this life?"--Matthew 6:25-27

It's been over a month since I posted anything, and probably longer than that with anything of any depth. I'm close to being 38 weeks pregnant and have been having all kinds of stressful thoughts creeping in all the time. Lewis came at 38 weeks so it seems like it could be any time now, but I even doubt my ability to know the signs of labor.

Adding to my stress lately has been another flea infestation. We had one last year that was definitely worse. Still, the idea of bringing a newborn home to get bitten by fleas is not a happy one! We got rid of our cat, who was actually helping the situation with her Frontline treatment, but I do feel better that there is not cat fur everywhere. All in all, it feels like we are winning the war now........but it all started May 1st, so it's been a struggle that has robbed me of sleep and given me that itchy feeling all over that is quite frustrating.

Another area of fear involves caring for two kids who can't speak! Lewis is not making much progress in communication. He has learned one new sign in the last 3 months or so. The state has denied our request for additional speech therapy (and oddly, recommended we lessen the amount to twice a month instead of once a week......I guess because progress is not being made?). Financially things are always tight for us too, but knowing another child is coming into our lives has added to the stress of that also, causing more than a few arguments with my dear husband.

It seems like lately as I look at things it has been easier to be frustrated or spin my wheels trying to do what I can to make things better instead of really seeking the Lord and his plan in all this. It's dawned on me that the fleas are probably more a wake-up call meant to push me over the edge in my dependence on the Lord. I feel like I've been carrying this huge burden and God is whispering, "Hello!!! I'm right here, hand all that over and let me carry it."

Sadly, much of my spiritual enrichment lately has come from Streams in the Desert, the little devotional book put together by L.B. Cowman. Not that it is bad....I just long for time and energy to dig deeper. This week, many of the readings have been about enduring through trials and seeing God's blessings through them.

"You are suffering through these tests, but know that God sees sweet flowers of faith springing up in your life beneath these very trials. You try to escape the pain, yet God sees tender compassion for other sufferers finding birth in your soul. Your heart winces at the pain of heavy grief, but God sees the sorrow deepening and enriching your life.

No, my friend, it is not raining afflictions on you. It is raining tenderness, love, compassion, patience, and a thousand other flowers and fruits of the blessed Holy Spirit. And they are bringing to your life spiritual enrichment that all the prosperity and ease of this world could never produce in your innermost being."

I know everyone is dealing with something out there! I'm really trying to rest and trust God's holy character.......that his love for me is constant and unchanging, and he is accomplishing his purposes in my life through all this.