Tuesday, September 29, 2009

My Able Son

Autism Spectrum Disorder is truly a broad term. The word "spectrum" says it all, meaning that there is a wide range of disabilities that qualify one to have this diagnosis. In RDI we learn that the core deficit is one's inability to use flexible and dynamic thinking. A child highly verbal, who does well in school and is very intelligent may still receive a diagnosis of autism, high functioning autism or Asperger's. Why? Because this child cannot tell the difference between whether or not you are smiling or frowning. This child may talk but will appear to not know that you are there. This brings me to the latest with Aydan. He has been struggling in his new school. The class size maybe too large causing him anxiety and frustration. It could be a little too dynamic for his ability. He's been biting, having some behaviors and isn't doing well overall. They want to place him in a county school which is another way of saying "your child is severely autistic". But wait a minute, I don't see it that way. I see a child that is able to reference with ease. I see a child that 6 months ago did not look at me when he spoke and now he does (even if he only says 5 words). I see a child that smiles when I smile, that knows when I'm angry and knows when I'm happy. I see a child that helps with the laundry, the dishes, cooking dinner...you get the point. In other words, is my child as "autistic" as the highly verbal kid who can't play a simple game of peek-a-boo? Sure we need to work on these kids' deficits but we also need to remember to build upon their strengths. Must it always be assumed that the child is incapable when a program fails? If you're not seeing results in your program "oh well, my child's just severely autistic." Hogwash. I know my son has a long way to go, I know he may always be seen as disabled but I also know that he is able in many ways and I am not prepared to close the door on that.

Tuesday, September 15, 2009

Crisis Mode

When I attended the RDI two day conference, I heard a phrase for the first time, "crisis mode". Although I had never heard this before, I understand exactly what it meant and how it related to the world of autism. Dr. Guthstein asked the audience who among us would take a 2 year old the grocery store willingly. He was shocked by the small number of hands that went up. "That's really sad", he said, "because it means non of you know what it's like to be out of crisis mode". He went on to talk about the importance of attitude and how it effected your child and the importance of getting out of "crisis mode". So... What is crisis mode? In my experience, it isn't necessarily brought on by tragedy but usually by change. Transition is hard and I'm not just talking about our kids on the spectrum. I felt this when both of my children were born. When they were newborns I would have nightmares about them falling off cliffs or getting run over by a car. I would wake up frightened and look over to make sure the baby was o.k., with my heart beating fast I would watch and wait for any sign of abnormality and when none came I turned over and went back to sleep. As the kids got older I found my panic begin to subside and we all settled into a routine but what happens when you have a child on the spectrum? For those of us that had a child who regressed you feel this brief moment of normalcy followed by chronic worry. When does it end? I don't know. Just as I've never really been able to meditate, I've never really understand being completely out of crisis mode. I listened to Dr. Guthstein's words... they made sense. Of course, your children are effected by your own state of panic, why wouldn't they be? Remember when you were a kid and how it felt when your parents were upset? Don't get me wrong, I'm a pretty laid back person. Most days we live our lives and I don't spend time with my child thinking "he's autistic". I just see Aydan. I see his smile, his personality and I feel his warmth. It's just sometimes I hear the clock ticking. When people tell me about the "window of opportunity" in autism, I say "hogwash". Do you really believe a child is incapable of change beyond the age of 6? That's absurd. Is it optimal to have early intervention? Sure, but that doesn't mean that at 4 years old my son has peaked. To say it out loud sounds ridiculous but in my heart... I'm scared. I know in many ways I am extremely fortunate to have a child like Aydan. He's affectionate, he eats well and he's a smart boy. I know all of this and would advise a friend in my position not to worry and to know that many great success stories didn't occur until 5 or 6 or even 40 years old. This is what I say and this is what I believe as a thinking person but as I a mom what I feel is different. I want to feel that sense of calm that "aah, the house is clean" or "my work is done" or "you passed the test", feeling. I do at times but it never lasts. As a logical person I think, "of course, it doesn't last, people change, things change, life is about change". Yet what I feel and think are seldom the same. I want that but I wonder is it ever going to be attainable to me? I know that I am doing what's right, the best I can...right? Am I missing something? Is it only kids of the rich that recover? What is recovery really? When I ask myself that I am reminded that recovery is merely a label as is Autism, ADHD, Dyslexia, Mental Retardation or whatever other label our kids are saddled with these days. The labels aren't for us, they're for the insurance companies, regional centers and school districts so they can determine whether or not your child is eligible for services. What I want for my son is that he be happy. I want him to have friends, to have a good life and to feel good about himself. This is why I find myself re-emerging back into "crisis mode". I want out but I don't know how to do both. I don't know how to relax and take it easy and still help my son. Until I learn that I find myself reeled back into "crisis mode" like a fish on a hook.

Monday, September 7, 2009

Aydan's Autism Recovery Fund

Hey all! If you'd like to be apart of Aydan's Recovery Angels, I've added a store selling products that will show your support. If you have any suggestions of different products you'd be interested in buying let me know. I'm more than happy to add or modify existing products based on popular demand. Again all profits are intended to help Aydan's Autism Recovery Fund. Aydan's big brother, Avery also lent a hand by designing his own t-shirts.
See my store at Zazzle

I've also added a donation button but please do not feel obligated to donate money. It is my pleasure to share Aydan's journey of recovery with the world. I realize it may sound premature to some to call this "Aydan's recovery" when we have so far to go but we certainly have a better chance of making it happen if we all believe that it's possible.

If you do chose to give, all money will go towards Aydan's recovery, particularly his bio-medical treatment. For those of you with autistic children, there's no need to elaborate; however, for those of you who may not know, autistic children often suffer from great medical problems that result in the autistic like behaviors present to the world. The underlined issues are many and usually need to be treated with costly diet interventions, medications and supplements (that's the short list). Most of these treatments are not covered by insurance. Aydan's supplementation and medication not covered by insurance are approximately $300 a month. That doesn't include the added expense of having him on the Specific Carbohydrate Diet and other interventions not paid for by insurance, regional center or school district. It's a whole big thing and with the budget cuts in California... That's a rant for another post.

How do I treat Biofilm?

When we first embarked on this journey, before we started Speech Therapy or ABA therapy or any other kind of educational therapy, we started bio-med. Why did we start that first? Because I didn't know what else to do. While we were waiting for our early intervention services from Regional Center to kick in, I couldn't just sit on my hands. So... I sat on my butt and googled well into the wee hours of the night. First we did the Gluten and Casein free diet. We say small improvements but even though I switched my son from milk yogurt to soy yogurt he continued to have sinus trouble, so we kicked the soy. After a couple of weeks the sinus problem cleared but there weren't many other noticeable changes and then one day someone recommended to me a book called "The Yeast Connection" by William Crooks. I found it interesting that back in the 1980's when this book was written that Dr. Crooks was treating patients with autism and found that their symptoms subsided after being put on a Candida diet and a dose of Nystatin (prescription anti-fungal/yeast treatment). I then put our son on the Candida diet. After this we saw a dramatic change. My son was crying, screaming, biting and tantruming for two weeks. He seemed to experience a die-off that might occur in the most profound heroin addicts. Although I took this as a sign the treatment was working, his diarrhea continued and that's how we found the SCD (Specific Carbohydrate Diet). I read "Breaking the Viscous Cycle" and fell in love with the Elaine Gottschal's story. After switching to the SCD we found a home that we remained at for the past 2 years. At first, I saw improvements in yeasty behaviors (ie. no more inappropriate laughter, less stimming, better sleep patterns, etc.); however, this too was short lived. We added pro-biotics and anti-fungals and all of this helped but if my son stopped taking any of these for more than a few days his yeast would return. After a recent visit to his Grandparent's I heard stories about him laughing like a drunk person and I said "here comes the yeast again". Another thing happened while my son was visiting his Grandparent's. I attended the Mini-DAN conference in Pasadena, CA. One of the speakers was a well respected DAN doctor by the name of Anju I. Usman. She was the first to hyposize this theory on a connect between chronic yeast and Biofilm. Because of our situation with yeast I was very interested in this subject and I would like to share the information that Dr. Usman imparted on those of us fortunate enough to attend this conference.

First of all, what is Biofilm? Since I'm certainly no expert let me tell you Dr. Usman's hypothesis: "Patients with autism, who have toxic metal burdens and toxic chemical burdens are likely to grow resistant organisms in their GI tract. This resistance to treatment is perpetuated by pathogenic biofilms will help to eradicate dysbiotic flora and improve the symptoms we call autism".

Sounds good right? So how do we treat it? Since we are about to embark on this journey ourselves I'll let you know how it goes but in the meantime I've provided the steps for you as described by Dr. Usman in case you'd like to give it a go; (These steps listed below are directly taken from the Dr. Usman's syllbaus provided to us at the conference).

"Step 1: Lysis/Detachment
-Enzyme (polysaccharidase, disaccharidase) (Kirkman's lab has a new one on the market that is supposed to target biofilm specifically, we haven't tried it yet).
~Staph use fibrinolytic like lumbrokinase, serratiopeptidase, or nattokinase
~Pseudomonas or thick mucus prodcution use serratiopeptidase
~May use pineappe or papaya for senstive patient
-Disodium EDTA (oral only)
-Lactoferrin (especially for Psuedomonas)
~Works best on an empty stomach
~Start one supplement at a time, go slow
~Do not give Enzymes on an empty stomach to patients with severe GI issues
~Do not give Lactoferrin to patients with dairy allergy
~Avoid giving Iron, Calcium or Magnesium with supplements above
~Careful with sensitive patients or weak patients

Step 2: Killing
-Consider Natural Antimicrobials first
-Do not start with Pharmaceuticals
-Vary agents depending on microbiology and mycology testing
-Bacterial Cultures tend to show Gram positive overgrowth or Gram negative
-Dysbiosis may seem to worsen initially
-Watch for die off, treat accordingly
-Consider the use of antiobiotics or antifungals meds if organisms remain persistent

Step 3: Clean up
-Fiber, insoluble/soluble
-Activated Charcoal if needed
-Alginates, Brown Algae
-Modified Citrus Pectin
~Very important step
~Help prevent symptoms of die off

Step 4: Rebuilding/Nourishing the Gut Lining
-Fermented Foods
-Healing, nutritious, non-toxic foods
-Supportive Nutrients"

Wednesday, September 2, 2009

Mommy Guilt

Today was my oldest son's first day of school. We just moved and he is starting the first grade in a new school. We were excited and talked about it for weeks. We had his backpack packed with 3 dozen freshly sharpened pencils, 2 dozen Crayola crayons 24 pack and so on. This morning I had one of those autism wake up calls. The sound of stimming a toothbrush against a counter in the kitchen by the stove light at 5am woke me up. I got out of bed and there was Aydan. He smiled at me and opened the refrigerator door. I gave him some food, he pooped, I cleaned him up and took him back to bed. Several hours later we went back to sleep. A half an hour later my alarm went off. It was time to take Avery to his first day. I was so tired. I got up, made my coffee, woke up Avery, he got dressed and we went. His class was already seated and none of the parents were still there, (we were about 5 minutes late). I saw a hub of parents circling around with their cameras capturing the excitement. I had forgotten mine. After dropping him off, I went home, woke up Aydan and took him to our IEP. He stimmed and I listened. After it was over I went back home and waited for the time to pick up Avery. Again, I was late... Again, there was a circle of parents with cameras (I forgot mine... again) and I couldn't find Avery. I looked high, low, in the playground, I shouted his name, everything. Finally, the teacher saw me and we began to look together. When I found Avery he was in front of the classroom door. I could see his face was red and his eyes were welling with tears. Another parent found him attempting to cross the street trying to make his own way home and brought him back to his classroom. He was angry with me. I was too. The teacher explained that this happens and in the future we must have a designated meeting spot. See, we had already missed the orientation for school the previous day because I had Aydan's IPP meeting. I didn't know where the kids were supposed to go and didn't think to ask. When I first started writing this post I thought it was about siblings of autistic children, then I thought it was about Avery but as I write, I realize it is about me. It isn't about what Avery's going through but rather about how I feel he must feel. In reality I don't know that but I imagine his disappointment in me and as it is reflected in myself. I am disappointed in myself because once again I became distracted by autistic world. It consumes me at times and I allow it to because it gives me purpose. If I weren't autism mom, who would I be? Let's back up and start at the beginning.

When Aydan was born I was very nervous about how this would go over with his then 2 year old brother. I had just barely stopped nursing big brother, Avery and I was wrapped with guilt about it. Imagine your mother stops nursing you and two months later a new baby who is getting your mother's milk. When Avery came to the hospital to visit me and the new baby he was excited. I could hear him running down the hallway saying, "Mommy.." He entered the room, big smile with markers and paper in hand. At two years old Avery was an amazing artist. He especially loved to draw the bad guy from the "The Incredibles" and he always had to carry marker and paper in case inspiration struck. When he saw me and the baby in the hospital bed he smiled. He said "baby". Everyone was passing the baby around from my husband to my mom and his mom and sister and so on... Avery was then able to climb up in my bed with me and have a little drawing session. We cuddled and drew. After a short while the baby began to cry and my husband handed him to me to nurse. I began nursing him and looked to see Avery's face. He was pissed. He took my mom's hand and indicated he wanted to go. He didn't even say good bye. A little while later my emotional wreck of self began to cry. The nurse came into the room and asked what was wrong. I told her about what had happened with Avery and I'll never forget her response, "it's hard to be all things to all people".

At home Aydan was a difficult baby. Like many babies who will later become autistic, he developed quickly but seemed clingy and cried whenever I left his side. I remember this one morning I looked over at Aydan to find him smiling and awake. He was so precious that I lifted him into my arms and in a motherly nurturing way I showered him with kisses and words of love. I felt someone's presence and looked over to find Avery standing in the doorway watching me as if I had cheated on him. I went to say something to him but he ran away. I tried to put Aydan down so I could go after Avery but he cried and I felt trapped.

The next two years would go by and we all began to adjust but as Aydan's behavior became odd and he did not show interest in his big brother like other younger siblings often do, we set in motion on the journey that is autism. Once again I worried about Avery. How would Avery a then 4 year old boy understand? Would I ever be able to give him the attention he deserved? Shortly after Aydan's diagnosis I read books about siblings of the disabled. These are great books if you're trying to increase your mommy guilt but mine was quite high enough. I lugged Avery around from appointment to appointment where he was told "only your brother can play in the sensory room" or "these toys are for your brother". Day in and day out the therapist came to the house with a suitcase full of toys...for Aydan. Eventually we could all see the toll this had on Avery and the therapist started bringing toys just for him. I also began to spend afternoons in Avery's room playing castle or whatever game he wanted and allowed the therapist to do all the work. Further relief came when my husband started to incorporate Daddy and me Wednesdays. Every Wednesday after school he and Avery would go to Chuck e Cheese or Round Table to play video games and get their gluten on. The years went by and we got through it.

Fast forward to today and Avery is a bright, sweet and sometimes grumpy boy. The other day he decided to take on the roll as Aydan's therapist. He had a three point plan. First get Aydan off his toes. He did. Then get Aydan to talk, He managed to get him to say "hi". Then get him stop stimming. This was tougher so I suggested he stim with him. Avery did a marvelous Floortime therapy session and after 15 minutes or so said to me "it worked and it was easy". You see when Avery stimmed with Aydan, Aydan smiled and this opened the door for a little light wrestling, tickling and fun.

I know I can't always be Supermom. In fact I despise the individual who ever came up with the term. I can be proud of the fact that despite my short comings, I've managed to make some pretty great kids.