November 12, 2009...update

Special Notes:

Happy Birthday to Grandpa Morris!!! We love you!

Also as of November 11,2009 my husband Cody E. Morris has completed all his testing and is finally a commercial pilot! Congratulations my love!!! We are all so very proud of you!

So today was a bit rough. Lots of irritability, yelling and tantrums. It is the third day that we have had to use an enema for Lochlan just to give him some relief.

(pics below of Lochlan's abdomen distention. "buddha belly"-This is NOT normal!)

We have appointments with GI docs here in DM in December and January (although my gut tells me they will be of no help) and have started the intake process at thoughtful house but the wait will still be at best 2 months. I feel so helpless and have no idea what to do. Both boys are primarily on Neocate Jr. and I suppose that it may not be a bad thing. Their GI tracts won't have to work so hard and maybe they would settle down a bit. I am transitioning them back to GFCF diet but I pray that it will be enough in the mean time before we get into thoughtful house.

Thoughtful House is an autism treatment center in Austin,TX and New York.

www.thoughtfulhouse.com

Conference presentation by Dr. Krigsman:

http://www.thoughtfulhouse.org/0405-conf-akrigsman.php

(really all the dr.'s at thoughtful house have great presentations so check them all out!)

There is a Pediatric GI dr. by the name of Dr. Arthur Krigsman, who treats patients there. He is recovering kiddos by treating their bowel disease and other GI issues. I recently had the honor of going to an autism conference the 3rd of November in which he was one of the keynote speakers. I truly believe he can help the boys it is just a matter of making it happen. I ask for your prayers for wisdom in decisions, patience for the wait, knowledge for the doctors and healing of their bodies. I know God will see this through we just have to trust him.

God Bless!

"be still, and know that I am God"

That is the verse that I will strive to live by in this period of life. When all is chaos and we too easily get swept up in the daily grind. When things are not as they seem and before you know it everything is unraveling before your eyes.
Well, things have not gone as we had wished lately. Our house has totally fallen apart, Lochlan has regressed and Sully is barely functioning. So what went wrong? How can we get back to where we were only 4 months ago? Why are we struggling with these issues again after it seemed as though we had overcome them? These are the questions I find myself asking whenever things start to go backward. Autism (any disability really) is bumpy, up and down roller coaster and it seems that the whenever we climb in progression there seems to be a fall deeper than that in which we started. The ups and downs are enough to break you down and cause worry, exhaustion, frustration, anger and depression. Every once in a while I catch myself in one of these vicious cycles and the only thing that breaks it is prayer and reading God's word. I long for someone to guarantee me that things will get better...and when no one else can give me the reassurance I need, I find it in his word, "be still and know that I am GOD."

About a month and a half ago, our Pastor of our church was out of town. Instead of someone else delivering a message they had testimonials of fellow church members about how God's grace really touched their lives. There were 3-4 speakers and 1 especially that really spoke to my heart. It was a mom of 3 or 4 children. Her testimony was about her daughter who had run a fever for 13 days and how scary it was waiting and not knowing what was wrong. During this time she reached out to her sister's in Christ for support, guidance and prayer. She and her family were just swarmed with God's love from friends and family. She really felt God's presence through the whole ordeal. If the fever lasted more than 14 days the Dr. was going to do more testing for things like cancer and other really scary illnesses. She was pleading, questioning God why and wondering how this was all happening. After 13 days and many, many prayers her daughter's fever broke. She was overjoyed. Her testimony was really to "be still and know that HE is GOD" and he can do anything!


About 2 months ago (early September) things seemed to be going well. The boys were doing well in school, other than some issues with behaviors from Lochlan. Overall though the kids seemed to be doing well, healthy and gaining weight. Lochlan's sleeping patterns were not great but things really felt as though they were smoothing out. Cody and I had felt that they boys were doing so well that we would re-introduce casein (diary) in small organic forms (derivatives really) once a day with enzymes and see what happened. At first we noticed no change. Stools were the same as before and so was behavior. Nothing seemed to change. Until, about the end of the month, we started noticing that things were changing. These changes were not immediate and some of them had started before we reintroduced dairy (we realized looking back at the whole picture). I am not convinced that casein is the culprit as much of these issues were on the rise before we realized the magnitude. I am not sure, however, that it isn't causing more stress, so with that said we will plan to remove it again. The stress of school was beginning to get to Sully and his anxiety rose to levels we have never seen before. Lochlan's behaviors and stims were getting worse as well. Both boys progressively got worse every day with eating, it started slowly and just built every day. One day Sully decided he wasn't going to eat any more vegetables. Then Lochlan started playing with his food more and more, becoming prompt dependant. He even stopped feeding himself with utensils for a while (only eating finger foods unless we fed him). Slowly they both slipped back into old terrible eating patterns. We would find ourselves prompting every bite and negotiating with them for over an hour sometimes two! They both seemed to resort back to their formula (neocate Jr.) in which they have been on for the last 2 years to keep weight. Sleeping seemed to get worse for Lochlan and he started waking up more often in the night.
Lochlan who was doing so well with potty training by the end of this last summer and in underwear, slowly started having more accidents. Before we knew it he stopped pooping again all together, holding it in. We tried almost any reinforcer we could think of but nothing seemed to work. We ended up having to use aloe vera juice and enemas to keep him from impacting. Our boy who was almost completely potty trained was back in diapers full-time.
Sully's anxiety and oppositional defiance continued to rise and our house soon became a hostile environment full of children fighting and yelling. In addition to Sully's irritability and irrational behavior, Lochlan resorted back to more aggressive behavior and even banging his head on occasion. Then about the early to mid October Sully started to run a fever (low grade 100-102). He stopped eating and his whole body just shut down. We thought at first mono, but deep down I knew it was more. I knew school was overloading him as late September he came home from school one day and was completely overloaded beyond belief. He was so upset he banged his head into our upstairs railing resorting in 4 stitches in his head. So I talked to the teachers and his aid, we had an emergency meeting. We tried to think of all these supports we could put into place. But, nothing would work as he was paranoid of being different and that alone was enough to send him over the edge. During all this ordeal with Sully and school issues, Lochlan was managing to be very aggressive and began to run off both at home and in out in the community.
Then in the midst of everything I came down with the H1N1 flu and was in bed for 4 days. I got so behind on everything! God bless my husband for taking care of sick people for 2 weeks! (and during all this time Cody has been trying to complete his commercial rating for aviation!) Just like we suspected the boys got it about 5 days after me! Once we were over the flu, Sully had been out of school almost 2 weeks already(including time off with fever). Cody and I noticed a slight change in him after being home a couple weeks and that his anxiety, although it was still there, was lighter, and seemed possibly manageable. So we decided to pull him and home school. After being sick with the flu, Sully was just not bouncing back as we had expected and he still wasn't really eating. I took him to the doctor and he had a terrible ear infection develop while being on antibiotics-for the flu (which was not clearing up). So we started another round of antibiotics and hoped that it would do the trick. After another 5 days of antibiotics the ear infection started to clear up. We decided to draw some lab work to check immune function as I just knew in my gut that they had autoimmune issues going on. I requested them to do some basic blood work, check for strep and also check their sed rates. Sully's sed rate came back at 70! and Lochlan's 17. Both elevated and in need of further testing. These lab results back up my hypothesis' and I pray that now we can move forward and locate, treat and heal these GI, immune and neurological issues we are having.

Well, I believe that although my husband may question my sanity these days.(and to tell the truth there are days I do feel crazy!) But, despite all this, regression, non-eating, withholding of poop, failure to survive school, failure to thrive, immune issues, increased stimming, irrational behavior, OCD, ODD- maybe God is telling Cody and I to "be still and know that he is God".

He can do anything. He can take our home and restore it to what it was 4 months ago or he may not. He may have other plans for us, another journey to take. Either way, God wants us to " be still and know that he is God" in the good times and in the darkest of moments. No matter what the trial, he will see us through and only through that trusting and dependence on him can we really be intimate with him and know him. So for those of you at the end of your rope, maybe try to "be still, and know that he is God" and you may be surprised at the result.

Update!

So today has not been great and we are seeing regression in our youngest son Lochlan. His behaviors are up, eating and sleeping are down and he is stimming constantly. These are the days when I look back to where we've come from and I try to be so thankful of all the progress we've made. We have changed nothing and there seems as of now no explaination for it. Could it be age or a phase? Who knows. I just pray that things get back to where they were and soon!

On a another front- both boys are doing well in school and Sully is coping better than I could have imagined! He is learning how to decompress when he comes home and hopefully by Christmas he will be full day and eating lunch at school. Lochlan continues to do well at school and in ABA, thank goodness. Here are some first day of school pics!

Autism Song...Enjoy!

I thought that this song was awesome.

http://www.autismspectrum.org.au/a2i6i5l383l397/podcast-downloads.htm

Two Grasses

Just wanted to post this home video of Sully 48 hours after the removal of Dairy. This is the first time that he spoke in sentence and spontaneously without the language being echolia. It still gives me chills.

Thank you Melissa, Rose and Lindsey from the Homestead!

Feeding Success!

Lochlan ate strawberries!
So..... as many of you ASD parents know feeding is hardly enjoyable. The constant prompting, pleading, persuading, encouraging and praying is exhausting!!! Like many we have fought this battle since nearly the begining and with slow progress and frequent regression its easy to get discouraged. BUT... for those of you who are at your breaking point. HANG ON! Your hard work will pay off and when you have that success no matter how big or small somehow it will give you enough hope and power to carry on. One year ago, Sully was limited to (all casein-free) grilled cheese, chicken nuggets, fries, applesauce, juice and rice milk. Lochlan was primarily on baby food (number 2 only) with the occasional chicken nugget, potato chip or french fry.

Sully did feeding therapy for a while with a pediatric behavioral psychologist and an Occupational Therapist with very little progress. Cody and I spent hours with him at the table promising him a chip for every bite he would take just to keep a feeding tube out. This bite for bite technique worked but it was very labor intensive and time consuming. So we started promising him 2 chips for every 2 bites then 3 until he was eating the majority of his plate and then getting a handful of chips at the end. This took lots of time and we reserved chips only for mealtime and if he ate what was requested. This is crucial as if he had access to them any other time they wouldn't have been enough of a reinforcer for him to eat. Once he was eating decent we started putting one piece of non-perferred food on his plate ex. one green bean or one strawberry slice. It is important to first have success with bite for bite before you add any non-perferred foods (at least for us it was) as before he would shut down totally if anything nonperfered was on his plate. The requirement would be to first taste the nonperferred food before chips would be given. Once successfull with a taste then we would require him to bite, chew and swallow before the chips were given. Once he was successful with this technique we changed to 2 bites of non-perferred the next time and so on. (Only move to 2 bites of nonperferred when they are eating one bite independently before reinforcer.)

Hint: do only one-two non perferred foods per week and then switch. But keep re-introducing them until they will eat them independently.

This technique has given us huge success with both boys. Feeding is still an issue sometimes and our issues have changed too, but it is much better and we have much more variety. Now if I can actually get them to stop arguing at the dinner table!