Faith Check

Today was one of those days that God uses life experiences to give us a faith check. This morning the boys and I got up and around. At about eleven o'clock we headed for the Center for Disabilities and Development in Iowa City. Lochlan had an appointment with a developmental pediatrician regarding his autism and self injurious behaviors. Now I know better than to go to any appointment without reinforcement, but I honestly thought maybe it would be good for them to see how difficult it really is right now managing their behaviors. Lets just say that it was more than either one of us bargained for. At one point the Dr. left the room so I could try to get Sully under control before we continued. The boys were behaving terribly and I could barely keep up with both of them in the tiny 8x8 room. I could have cried. I listened as she continued to tell me that his behavior is not uncommon in children with autism and that at some point we may need to use medication for him. I looked at my precious boys and my heart just sank. She continued on to tell me that kids with Asperger's are typically nervous and anxious kids and that Sully too may need to be medicated to be able to cope. It has been over 2 years since I first heard the words "I think your son may have autism". You would think that by now it would have sunk in. So how can my heart sink so low every time another professional comes to the same conclusion? I know that my sweet little sons have autism, I think what gets me is I can't ever seem to do enough to fix it. So she went on to say that she would refer Lochlan to the Behavioral Psychologist's waiting list (yes another list!) and supports the speech and ABA therapy we are trying to get into place. She also recommended we get some respite for both boys. With that we packed our things and loaded back into the car. I was so very disappointed that there was no medical cause for his SI behavior and that it was in short just autism. We got back on the interstate and headed for home. Along the way the skies clouded and storms moved in just to the north of I-80. Sully was so fascinated by the clouds and as they swirled across the sky it was as if God was painting. The sky was so beautiful. I explained to Sully that God made this and it is all beautiful. Even in storms there can be beauty. This really got me thinking about the last week. It has been so ugly at our house with behaviors and meltdowns but if you look at what God is doing with our hearts in this time it is simply beautiful. If you know me you know that I like to be organized and in control. There is no control with autism-not for me anyhow, and I am constantly depending on my Lord for patience and guidance. I have come to turn to him when I feel so crazy and out of control and amazingly he puts me back together so we can get through another day.

Update 06.18.08

Well the B-12 injections have been an adventure all in themselves. I was having trouble injecting into the fatty tissue (because the boys have none!) and so we decided to give them every other day at a slightly decreased dose. It did the trick and we are no longer excreting B-12 shortly after administering the injection. Lochlan continues to spontaneous greet people and it is so awesome to hear his little voice speaking clear words. He is still in crisis mode most of the day and our SI behavior has been continuing to increase over the last week. It seems as though everyday the SI behavior gets more in grained into his being and it has become a reaction to almost anything that goes against his agenda. Today I watched in horror as he spent 38 minutes trying his hardest to hurt himself because he was upset. He wasn't looking to me for a reaction he was just kept getting madder and madder because what he was doing wasn't enough. We continue to pray for ABA and I have finally found someone to come and provide speech therapy. Let me tell you it is nearly impossible to get any therapy without at least a 6 mo waiting list!!! Lochlan has also been displaying more typical autistic traits and also more frequently; odd eye gaze, awkward finger movements, spinning and rolling on the ground, fixating on wheels. Sully continues to verbally stim and is more obsessive than ever. He will get fixated on bugs every time he sees one (which is very often this time of year) and sometimes it is a couple hours before we can redirect him.
On the supplement side-we have increased the Sacchermyces Boulardii (probiotic) to help kill yeast (I am actually seeing it in the stools). I just hope it will be enough and we will not have to move onto prescription anti-fungals. They are both continuing on Cod Liver Oil, Calcium, Zinc, Enzymes and Lochlan is on Colostrum. Last Friday we received their test results for the O.N.E (Optimal Nutrition Evaluation) test we sent in the end of May. I couldn't believe the results. Neither boy had any B-12 present (the labs were collected before we started the injections and 4 days after holding all other supplements). They both have GI dysfunction, mitochondrial dysfunction, malabsorbtion issues as well as their Citric Acid Cycle is really suffering. Their oxidative stress was elevated, as was the yeast and bacterial dysbiosis and In short- the boys are toxic, they aren't able to absorb the nutrients that they get and they have some mitochondrial (cellular) dysfunction. Not sure what the plan of action is yet but I am scheduled to have a phone conference on Tuesday with our DAN! Dr. To be continued....

Sully rides a BiKe!

Learning to pedal a tricycle has been a right of passage for centuries. Sully being the outdoorsy boy he is-LOVES to ride his four wheeler, tractor and tricycle. However he never had the strength or coordination to pedal. Cody and I have tried to teach him how to keep his feet on the pedals and push but he continued to struggle. I mentioned it to his OT and she has worked with him over the last 6mo. He has made huge gains in this area and 2 weeks ago at therapy he climbed on a bike with training wheels and to our amazement began to ride! With all that's going on at home-Cody finishing up his pilot's license and Lochlan in crisis mode-it slipped my mind to tell Cody of this huge accomplishment. (Terrible I know) So at Toys R Us the other day we went and looked at the bikes for Sully's birthday. Cody pulled one down for him to sit on and to his surprise Sully climbed on and began pedaling. Cody was simply stunned. The grin on this face went from ear to ear. He was so proud of his boy. Such a simple task to most, but to a boy with Asperger's and SPD a near-impossible feat.

Coordinating services and B-12 Update

Insurance waiver, title 19, case managers, coordinating services, qualifying waiver services, respite service providers and endless miles of yellow tape. This is my life, my current lingo and my future to do lists for navigating through a waiver program. Despite all the yellow tape the waiver program is one of the best things about the state of Iowa. No matter what your income if your child meets certain criteria you could qualify for a waiver program that would waive your income and provide you with title 19 (medicaid) and other services pertaining to the child's needs. This means we will finally be getting some help in paying for Lochlan's treatment and we will be able to afford more treatment for him. Hallelujah! We will now be able to provide Lochlan with ABA Therapy (as soon as Homestead can coordinate the services), speech therapy, more OT and also respite(which means mom gets a BREAK!) Could it sound any sweeter? Luckily enough we have a great case manager who is just as passionate as we are in getting Lochlan the help he needs and deserves.

An update on the B-12 Injections

We have had 2 more injections since my last post and unfortunately I am unable to say that things continued to get better. I do believe that the B-12 is working-I am having some trouble injecting it into the fat.(the boys are soooo skinny Sully 33lbs Lochlan 26lbs) I noticed today just after I gave them the injection that both boys' urine was a slight tint of pink-which means they already excreted the extra that was to be absorbed over the next couple days. Aaarrgh! I will try to be even more careful the next time and will try again at an even smaller angle. Sully continues to verbally stim and it is causing some real trouble especially at meal times. He is still very non compliant and seems to avoid following directions with asking questions or justifying why he needs to continue doing what he is doing. He has also started to tell me that I am "irritatin' him"..which doesn't go over very well and he ends up apoligizing to both Jesus and Mommy for being so mouthy! He is becoming more rigid every day and is now requesting bacon for every meal. Despite his chattiness at the table and unwillingness to eat what I have prepared for him, he is keeping weight thanks to the neocate junior. Hopefully soon we will get the results of his ONE (optimal nutrition evaluation) test so we can have some multi-vitamins compounded for him.

Lochlan had 2 really good days last week and then started slipping back into his crisis mode of falling apart and then engaging in self injurious behavior. He has also started to bang his foot on his chair and poke his eye when he is in a meltdown. We have had to put his helmet on him and then put him in his high chair with 5-point harness just to keep him safe. I am praying that the eye poking business stops as I have no idea how to intervene without giving physical contact. Currently we are just ignoring this behavior and monitoring it so he doesn't harm himself. It has only happened a couple of times thank goodness. On a good note...He is continuing to greet his dad and I and with "hi mommy!" and "hi daddy" spontaneously. He also spontaneously said "what happened" today, normally he would only echo this but today it was out of nowhere. He has been chattering more and more. Not much we can understand, he is even trying to vocalize when Sully is singing. He will move his little head back and forth and it is sooo sweet. Speaking of sweet-Lochlan has started to potty in the toilet before bath- he has done it twice now. I think he is just starting to figure the whole potty thing out. But....I will save our potty sagas for another post.

Iowa Walk Now for Autism! 2008

June 7th, 2008

This year was our first year to participate in the Walk Now for Autism! It was so exciting to be among so many friends and families pulling together to help our children. Thanks to everyone who donated money and time to walk with us. It was amazing! Here are a few pics from the walk.

"Hi DaDdY!

"Hi Daddy!" It was the first time the words had ever come out of his mouth without prompting. Cody stood in the doorway in utter amazement. Lochlan looked up and upon seeing his daddy in the doorway greeted him. We looked at each other and started laughing. They were the sweetest words. Yesterday was the day after we gave the last injection. All day he was chattering his own language as well as spontaneously saying a few two word phrases. This is simply amazing considering as little as 2 weeks ago he would only say a two word phrase with prompts unless it was bye-bye, stop-it, let-go, or more-please. (these are words that Lochlan only says together and in his mind it is not two words together but only one word.) He even looked as if he was "present" all day! His eyes were engaging and alert. Normally he is in his own world and you may happen to be apart of it for a second and then he's gone. Yesterday was his best day yet. His occupational therapist told me she could just cry; he did so well. He played with play-doh for at least 5 minutes! He didn't stim on the cupboard doors and only stimmed on the room door a couple of times. It was a totally different kid. We still have not had a decrease in his self-injurous behavior but hopefully that will also start to get better. We definitely will be continuing the B-12 injections and will continue to monitor his progress along the way!

Lochlan with his new favorite toy-Thomas.

Sully is also getting injections and we have not seen such a huge impact on him as of yet. He is very verbal and his eye contact is fair to pretty good-most of the time. He continues to spend much time lining his cars up wherever they are and seems to get "stuck" on things quite frequently. He is our rigid one who thrives on schedule and sameness. We are going to create him a big picture schedule for at home so when he will know what's going on. He seems to have more trouble coping when we are not at home so I will also make sure I take his PEC schedule with us when we go.

Here he is lining up his new cars.

B-12 Update

So far we have given 2 injections, 1 every third day. The first injection we didn't see much change. The second injection was given 2 days ago and Sully's must have gone into the muscle as he excreted the excess in his urine about 40 minutes after we administered it. He is really quite thin and I will have to give it a 10 degree angle-just under the skin. Lochlan's however went into the fatty tissue as he did not excrete the excess-it should be slowly released into the system over the course of the three days. We have noticed an increase in his spontaneous language as well as some 2 word requests- "more please"and "milk please". This is a huge accomplishment for him!!!

Finding JOY in the time of Trial

James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and COMPLETE, not lacking anything.

This scripture was the focus of my daily devotional the other day. It never ceases to amaze me how God reveals himself to me daily. I have never been a great bible reader but the past year and a half it has been a great comfort being reminded that God is right along side us. There are many times that I catch myself feeling overwhelmed and in despair over a situation. And every time I see the work of God and am reminded that it is all in his plan. We are just along for the ride and we need to place complete trust in him and know that even in trial we can find joy. Maybe not the joy that makes you jump up and down or hoot and holler but pure joy knowing that God believes you can handle it and feeling thankful that he knows you will be faithful even in this trial.
This past year we have run into waiting list upon waiting list. I have spent countless hours on the phone just to be told "I'm sorry but we have a waiting list for that service." The trend seems to be: hurry up so you can wait. As a mom, it is such a terrible feeling knowing your child is slipping and there is nothing more you can do.(that is except prayer-which I do a lot of!) We have been waiting to get Lochlan on a waiver that will provide ABA therapy as well as medicaid and respite services. I applied last november and we have been maneuvering through the red tape most of the winter. I was told in February that he was approved but now we have to wait for a service provider. The last couple months have been really rough at our house. Lochlan has been regressing terribly and we have not been able to anything more than OT and working with him at home. His frustration over not being able to communicate builds every day and he has been engaging in self injurous behavior increasingly. I have been feeling really down and desperate especially the last couple weeks. How would this fit into God's plan? Why should we have to sit and watch him slip further and further every day? Today I got a call from our service provider and they have assigned us a case manager. We are meeting tomorrow to get things moving with the waiver. I have never been so happy in my life! So whenever you face trials and I know every parent does remember that he's in charge and try to find joy in the midst as it was planned from the beginning and these trials will help you become the person he wants you to be.