Special Report

I know that I have already posted today, and I usually don't do this but we have breaking news. Two of the three little ones in our house are officially potty-trained. Belle, the dog, has decided she would now like to pee somewhere other than our carpet. She has, in turn, opted to use her pee-pee pads and even barks at the door to go outside. It has been an unbelievable turn of events, and I'm not done.
Also, Bubba has thrown his diapers to the curb (except for bedtime). He has worn big boy underwear to school for 3 days with no accident and has also attended speech therapy and occupational therapy with no accident. He even told his OT he had to go potty. This is HUGE!!

Terminology

*This is one of the first photos we received of Bubba (I found it yesterday). He was just a few weeks old, with his foster mother and her mother.


Everywhere you turn, there is different terminology to be used and only a set group of people may be privileged to learn it. You may find this in the work place, within certain social circles, or hanging out with a younger generation. Nonetheless, it is there. For instance, Evander's day is filled with things like spend, dry runs, and the ESC. He speaks to vendors and customers about the best product line for bradycardia, syncope, and atherosclerosis, and I have no idea what he is saying. When Evander and his mother begin a conversation, I might as well leave the room because it is a foreign language to me. If you are not in this particular environment, then you, likely, have no idea what the other person may be talking about.


So, it should come as no surprise to anyone that the same holds true for the adoption community and the autism community. Each of these "communities" has its own glossary of terms, for which outsiders are now privy to, but one difference remains. I have found that, at work, if I say TEKS instead of TAKS, I am corrected and we move on, but that is not the case with these 2 communities. A fine line exists between appropriate terms and downright offensive ones, and an outsider shines like a full moon on Halloween.


I will begin with the adoption community, because I was just looking through some old emails yesterday from when Bubba was in foster care. Even the subject lines of the emails would seem foreign to some. There were emails about pink slips and PGN, some about DNA and fingerprints. I began to giggle because it almost sounded criminal. While I can laugh at it, others cannot, and many are easily offended. For instance, never say real mother or mother when you are speaking of the child's birth mother. Never ask adoptive parents if the child is theirs (he/she is still their child whether he/she is adopted or biological). Also, don't assume you know the ethnicity of the child. Simply ask the ethnicity, country of origin, or race of the child. Trust me...an adoptive parent would much rather you ask than assume their child is Chinese (when he is really Guatemalan).


It doesn't get less offensive when moving to the autism community, either. While this community, with its special terminology, is new to me, I quickly learned to watch my step. There are words like neurotypical and non-neurotypical. You should never say normal or not normal. Also, there are the ABCs of treatment such as: PT (physical therapy), OT (occupational therapy), ST (speech therapy), and ABA (applied behavior analysis). There is also biomedical treatment (all the stuff we are doing) and the vaccine fence. There are DAN! doctors (Defeat Autism Now), thimerosal (mercury preservative in vaccines), and TACA (talk about curing autism). It just goes on and on!


While I always thought the adoption community was the most sensitive I had seen, I had yet to experience the autism community. These parents are strong-willed, have definite opinions, and will not budge. They are working to recover and protect their children at all costs. They have no time for sympathy, ridiculous comments on their child's behavior, or someones opinion on their chosen course of treatment. They have HOPE on their side and nothing will stand in their way. Adoptive parents and parents of ASD children are some of the best parents I have seen, both striving for happiness for their child.
*Bubba's PPCD eval is tomorrow morning!

A Lack of Established Treatment

"We share parents' frustration over the undefined causes of autism and the lack of an established treatment, but we urge parents to be cautious when choosing treatment options for autism. We recommend scientifically validated treatment. There is no valid scientific evidence that vaccines cause autism, but because of unfounded fears about vaccines, the U.S. is suffering its biggest measles outbreak in a decade." (Oprah.com) As I listened to Oprah read this statement from the American Academy of Pediatrics, while interviewing Jenny McCarthy, I laughed out loud.
Earlier that same day, our pediatrician called to discuss our evaluation from Thoughtful House in Austin. The moment I heard her voice, every muscle in my body stiffened and my palms started to sweat. I could feel the frustration and anger beginning to course through my veins as her skepticism oozed through the phone. She instantly asked how they got "all these levels" from Bubba. I explained that we sent a urine and stool sample, at which point she said "Well, that is more accurate than some other ways." Then, it all started to come. She began to speak hesitantly, yet authoritatively, as she explained that some of the doctor's methods "are out there".
"I do not believe there is any reason for him to take additional supplements when he is receiving a multivitamin. I also do not see any reason to treat him for the flora in his stomach, but, since you have started, he will be fine."
"Will it hurt him?" I asked.
"Extra Vitamin A,D,E, and K could hurt him if it reaches toxic levels," she explained. (None of these is Bubba taking)
"OK...but will it hurt him? Will the B12 injections, the glutathione, the zinc, the fish oil, the magnesium, or the folic acid hurt him? If he has more than he should, will it HURT him?" I asked assertively.
"Well, no. It will not hurt him, but there is no reason for him to have it" she said.
"Well...I see no reason why we shouldn't try it. If the worst that can happen is no change, why not TRY?" I said angrily.
"I understand your frustration, and I know that you are responsible parents, but I must urge you to be cautious when choosing treatment options. Many of these treatments have no scientific basis," explained Dr. By-The-Book.
Now you know why I laughed later that night. It seemed that, if our pediatrician did not write the AAP statement, she read it to me, and this is where my frustration begins. I am not (contrary to the AAP's belief) frustrated over the undefined causes of autism. I am, indeed, frustrated with the fact that the AAP chooses to call "a lack of established treatment" the very treatment that is working for Bubba. I won't even get into the vaccine department (even thought the AAP is aware that the rubella virus has been proven to cause autism, and live viruses are in the MMR vaccine, etc). (I am not anti-vaccine, but something must be done to protect these children).
There are thousands of children out there who are recovering from autism with the help of DAN! doctors (like ours at Thoughtful House) and gluten-free casein-free diets, supplements, hyperbaric chambers, therapies, chelation, and anti-fungal treatments. How can the AAP call this a lack of established treatment when it is working and children are getting better?
This is why our family will continue on our path to a "lack of established treatment". After beginning the GFCF diet, Bubba began to speak in sentences, sing, and count. After the antibiotics and anti-fungal, Bubba can use the potty with ease and even wore big boy underwear to school for the first time on Friday. After beginning the glutathione cream, only last night, he seems more social with Baby (but it seemed to wear off toward the end of the day so we are trying more tonight). After the cream, we will begin the B12 injections and see what happens. We have a total of 15 supplements to try. We will begin each supplement and hope for positive results. If we see positive results, we continue the supplement; if we see nothing we stop.
I just wish the AAP could see the positive results we have already seen. While this treatment may not be established to the generic medical community, it is established in the autism community and the results are powerful.

The Olympian

Bubba was very excited about his first gymnastics class. As we drove, I gave him the rules of gymnastics, which were:

• No crying
• No screaming
• No lambie

He agreed and understood that these were terms for dismissal, so when we arrived I expected everything to go rather smoothly. I pulled into the parking lot to find it packed like a can of sardines and entering the gym wasn't much better. Looking out on the gym floor was like watching an anthill that had just been disturbed. There were children, parents, and coaches everywhere, and I immediately realized we might have a problem.

Bubba doesn't do crowds, and he doesn't do loud chaotic noise. Anticipating the potential issues that may arise, I ran up the stairs, tackling 2 at a time, with Bubba in tow. We were out of the immediate craziness but there was still the noise. I watched as he took it all in and clung to me like a baby monkey. Then it came.

"Go home!" he whined in my ear. "No baby, we can't go home. We have gymnastics!" I said. "No! GO HOME!" he yelled. "Remember our rules. No screaming or we will have to leave!" I said and immediately realized how dumb that was! Bubba begins to scream at the top of his lungs. Who could blame him? He wanted to go home, and I had just told him that screaming was a ticket home. I rushed over to a corner, put him down, and began to speak.

First I said "Don't make me call your daddy!" (which sometimes works but not this time). Then I said "Baby goes to gymnastics here every week and she has fun. I know you will like it. Just please try." "No, no, no!" he screamed. "Just try it, and, if you don't like it, we will go. I promise!" This was my last ditch effort, and I knew if he just got started he would love it. He looked at me and said "Elevator." "What?" "Elevator?" And I knew I had him! He anxiety about the crowds stopped when he noticed the elevator behind me, and, with that, the gym door opened for us to go in.

I wish I had photos of my little man stretching, flipping, and swinging. He absolutely loved it! He liked it so much, in fact, that he followed EVERY direction the coach gave. He did forward flips like a pro and jumped on the trampoline in much the same way. He attempted a cartwheel and crawled through the tunnel. He walked on the balance beams with NO help and even stepped over obstacles while maintaining his balance. He jumped right on the uneven bars, held himself up, and flipped over. Then he quickly moved to the rings (his fav), swung by his hands, and placed his feet inside, before dropping to the ground (which is why I think they were his favorite). He had so much fun I had to drag him out of there at the end!

When we got home he had a snack and went to bed. I think he was actually asleep before he made it into his room. After he was tucked in I said to Evander, "He can be in the Olympics, right?" "Why not?" Evander asked. "Because he was born in another country," I replied. "But he is a US citizen." Evander said. With that, I was satisfied!

MUST HAVE

UPDATE: Jenny McCarthy's new book Mother Warriors: A Nation of Parents Healing Autism Against All Odds is out today. I am rushing out to buy a copy!
Also, Jenny McCarthy will be appearing on Oprah tomorrow and The Ellen Degeneres Show on Oct 3.

Polite Racism

Judgement is defined as "the forming of an opinion, estimate, notion, or conclusion as from circumstances presented to the mind" (dictionary.com). As a Christian, I know that judging is left up to God, and as a citizen, I know it is left up to actual judges. However, we all judge, whether we want to or not. We form opinions of others based on what we see or hear; some may be good and others may be bad.
Just before Bubba came home, I read an article about polite racism. The article told a story of a woman who had 2 biological daughters and one African American daughter. She explained how, no matter where they went, the African American daughter would receive a variety of complements, but her white children were ignored. At first she thought everyone was just in awe of her beautiful daughter, but, then, she realized the strangers didn't know how to react to the obvious difference in her family. After reading the article, I commented on it to Evander and we both joked about how absurd it was. The mother was making a big deal of nothing.
Boy, was I wrong. It started when Bubba first came home from Guatemala. People asking if he spoke Spanish (at 7 months old), if his mother had abandoned him, if I was Mexican, or (the kicker) how we found such a cute Chinese boy when they only put girls up for adoption. Strangers glancing at his brown skin, black hair, and dark almond shaped eyes immediately formed an opinion of our family.
After the Baby came, it was much more obvious. It seemed that people felt sorry for me that I had a brown child when I now had a perfectly good white one. I heard things like, "I'm so glad you have one of your own" (last I checked they are both mine) and many asking what country Baby was from. Strangers definitely do, though, make a difference in commenting on our children. They always point out Bubba's differences to Baby and I, while pointing out the similarities in the two of us.
Now, we are seeing it on a whole new level. As they are growing and seemingly more the same (as far as developmental level), people comment on behaviors. Everyone mentions how nice, polite, and sweet Baby is, while pointing out how wild, rambunctious, and emotional Bubba is. Not to long ago, the three of us were sitting in a waiting room when Bubba decided to take a toy from another child. We had been waiting for 45 minutes and I had been desperately trying to control him but it was no use. The grandmother of the child leaned over and said to her, "It's a shame that some little boys are so bad." At which point I remarked, "It's a shame some grandmothers are so ignorant." And with that, our name was called!
I realize that our children do not yet notice the differences made between them, but it does break my heart when I witness it. On a predominately white Chick-fil-A playplace, Bubba is ignored or made the bad monster, while Baby is included. These children do not know or understand what they are doing or have done, but their parents do. These childrens' parents are the same parents who stare at us in the grocery store or comment on his "nice tan" at the doctor's office. My only hope is, through all of this, our children are better people because of it.

No Fun With Fungus

WARNING: Yeast and poo are discussed in the following post.
In Jenny McCarthy's book, Louder Than Words, she describes her son a few days after beginning the anti fungal treatment and compared him to The Exorcist without the spinning head. So, when the doctor said we might have a rough couple of days once we began the medication, I was prepared. Or so I thought.
We started the anti fungal treatment (for the yeast currently growing in Bubba's gut) on a Friday, and I told his teacher at drop off to call me if he started acting crazy. We made it through the weekend with a slightly elevated temper and moderate aggression, but nothing new. On Monday morning, Evander remarked that we should be out of the danger zone, and I agreed. Our doctor had said, after all, that 3-4 days of insanity was normal, but I should have taken note that he said normal. Nothing at our house is every normal or even on the bell curve of normalcy.
Well...the insanity began on Monday, three days AFTER we began the medication. I picked him up from school only to have him melt down on me in the car. I had, evidently, not brought the correct snack (he wanted a fruit snack not a fruit roll). At home he was throwing things, generally disagreeable, and extremely mean to Baby. He also didn't eat much and generally wanted to be left alone. The same goes for Tuesday.
Wednesday, however, was our Exorcist day. It began with him refusing to eat breakfast, get dressed, go to school, etc. I picked him up, and we had the same meltdown over the wrong snack. When we got home, I showed Bubba the new blocks I had purchased and he immediately began to play, but all hell broke loose when the Baby took one of his precious bristly blocks. He quickly jumped to his feet, waving his arms and screaming like a banshee. He was in hot pursuit and I wasn't far behind. By the time I got to the scene, Bubba had pushed the Baby to the ground, grabbed the blocks, and had his fist cocked, ready to fire. I managed to catch the fist in mid air and scoop him up before any serious damage was done.
Since I interfered, however, he was not a happy camper. I tried letting him go, but he went after her again, so I decided I would have to restrain him until he calmed down. Otherwise, the Baby was in danger. I must say that, while I am thrilled he has gained weight, he is much harder to tame. I did as our doctor had told us and held his arms tight to his chest and wrapped my legs around his, but I was just no match for this child with super human strength. So, there we sat, Bubba kicking my legs, head butting my chest and chin, screaming, "HELP ME! HELP ME!" in a demonic voice (with his eyes literally rolled back in his head). Tears were streaming down his red face and he was shaking with anger. I, too, began to cry because I felt helpless. I kept pleading with him to take a breath and settle down, all the while reassuring him that I was trying to help him. All I could do was hold him as he half fought-half laid against me. I tried putting him down again, but he fell to the tile floor and began hitting his head, so I picked him up again and continued my restraint.
Forty minutes later it left as suddenly as it came, and in its path Bubba and I were left crying and shaking. He was physically and mentally exhausted from the storm he went through and simply laid down on the couch. I, myself, was a complete and total mess. I felt horrible and sad and scared for him all at the same time. Was that the yeast die-off the doctor and Jenny McCarthy spoke of? If so, how could something in your own body affect you so terribly?
Now it is Saturday, and we have experienced three consecutive days of ...WOW! Each day Bubba has slept through the night and woken up in a great mood. He is now talking even more, in complete sentences and answering questions like a pro. His poop is normal, making it easier for him to use the potty (and potty training much better), and he is trying new foods. On Thursday night he tried a sweet potato (he gagged but at least he tried), on Friday he ate 4 spoonfuls of peas, and this morning he ate an orange. His focus and patience have improved tremendously. I was actually able to work with him on drawing straight lines today. Now...a funny story.
Evander took Baby to swimming lessons this morning and I wanted to take Bubba to do his own thing so it went like this:
Bubba, where do you want to go?
To Sonic
Sonic? What do you want at Sonic?
I need juice, Mommy.
So...we went to Sonic at 9:00 am to get some apple juice. I was so excited that he actually answered the question, I would have gone anywhere!
While at Sonic I asked...
Bubba, where do you want to go now?
Target
What do you need at Target?
Halloween
Halloween?
Yeah, I need Halloween stuff Mommy.

Can you believe it? A few months ago, even a few weeks ago, we never would have had that conversation. Yes...a conversation!!! I am so proud of him. He has endured so much and continues to try so hard. He is my hero!

Feeding Assessment

Bubba's feeding assessment was today, so we hurriedly dropped Baby at Momma Bird's house (who I am forever in debt to) and were on our way. We walked into what has become the very familiar appearance of a therapy office waiting room. As we walked in the door, we were met by a variety of pre-printed signs covering the walls. These are the signs that immediately make you sit up a little straighter and wonder if you are following all of the directions. A green one said "No food or drink in the waiting room. Many of our patients have food allergies". So...I immediately tried to hide the sippy cup I was holding as I checked in at the front desk. We went through the same driver's license and insurance card dance before we were able to sit in the off-color 80's print chairs, being left to wait for an undetermined amount of time. Because of this my eyes were forced to gaze at a generic ocean mural which I was facing, probably painted by a not-so-professional artist. I began to wonder just how many ocean murals this person had painted because the color of the ocean was slightly off (more green than blue-green) and the "Nemo fish" (as Spencer called them) looked more like Goldfish with stripes. Just as I was beginning to wonder what job the father next to me could possibly hold, our names were called.
From going twice a week to a therapy center, Bubba navigated the maze of swings, mats, and balls like a pro, while I tripped and stumbled to the room we were to be assessed in. As I walked into the tiny airless room, my mind immediately flew to the many special ed meetings I sat in as a teacher. In these meetings, there were various teachers, therapists, a principal, and other professionals with one/two parents. I never understood why the parents look so nervous until today, as I entered a closet-like meeting area holding two nutritionists, an occupational therapist, a psychologist, and a speech-language pathologist... and a mom. I do not take my position lightly, but it was intimidating (and I'm not easily intimidated). I quickly began to wonder, "Do I really know ALL of his supplements and medications? When did he start the anti fungal? What does he not like to eat? Why are we even here?"
And it didn't get easier as they, one by one, bombarded me with questions. I began to doubt myself because I couldn't remember the name of one of his medications; I couldn't remember if it was peas or green beans he didn't like when he was a baby; I couldn't remember if he choked at 12 months because he had too much in his mouth or he didn't chew it up good enough. To make matters worse, my own son proved me wrong. Moments before he ate an entire can of mandarin oranges, a bowl of mixed vegetables, and a container of applesauce (all with his hands), I had said, "He will not eat anything green or anything mushy. He also will not eat anything with his hands because he hates for his hands to be dirty." At that I said, "Well...looks like we're done here. He's cured!"
After watching him eat, examining his mouth, and asking even more questions, they went to meet and decide what to do with our little Bubba. Slowly they came in one by one to tell me their recommendations, and they are as follows:

• Speech therapy is recommended 1-2 times a week for 30-60 minute sessions (in addition to our current 30 min session) to focus on improving oral motor feeding skills and pacing skills (so he doesn't over stuff his mouth).

Evidently Bubba has decreased jaw and tongue strength. Every one's tongue moves as you chew to make sure the food is chewed and swallowed correctly, but Bubba's tongue doesn't move at all.

• Occupational therapy is recommended 1-2 times a week to focus on sensory processing, core strength, postural skills and hand strength.
• Gymnastics (he is already on the waiting list) is recommended to facilitate strength, endurance, and motor planning.
• A physical therapy evaluation is recommended to establish a base line of skills and aide in strengthening.
• Nutrition services recommends weight checks to monitor rate of weight gain and growth curve.

The nutritionist was happy to see the GFCF diet and to see that he had gained weight and was doing better.

So...we left mentally and physically exhausted by the 2 1/2 hour evaluation but happy that we have yet another road to travel to recovery.

Note to Guests

All people are quirky in their own little way. Baby requires a bow and sunglasses before leaving the house, and she likes to wear a different shoe on each foot. I do not like my food to touch and I pick all the toppings off a pizza after the first slice. Evander double checks every door before we go to bed, and he presses the alarm button a zillion times to make sure it is set. Every one has them, good or bad. Some you may overlook and others may drive you insane, but the quirks are always there. Bubba's quirks, though, may be the most interesting (and not so easy to overlook).
For instance, he will yell at you if you try to sing along to the radio, but he likes to be sung to sleep. He screams when sunlight hits his eyes (which is why our blinds are closed) but turns on every light in the house. He needs total darkness to sleep (which is why his walls are navy blue, he sleeps in a tent, and his window is tinted), but he is deathly afraid of the dark. He cannot stand the thought of being dirty, but he will put random things in his mouth (coins, broom, whatever might be on the floor, etc). He will not cover up at night but hates to be cold (which is why he sleeps in long sleeves and socks year-round). His food must be room temperature or colder, and he needs a napkin at all times. He hates loud noises but is the loudest talker I have ever heard. We, often, have to speak loudly to get his attention, but then he says "No yell at me!" He doesn't care to play with you, but someone must be in the room at all times. Tags (on shirts) literally cause him pain, but he doesn't want you to touch him to cut them out. He prefers a smack on the back of his head (with a pillow) to a hug, and says "No thank you" when you ask for a kiss.
So I thought I would offer a little note to all potential guests in my home. If you find yourself pulling up to a house with blinds tightly pulled but must shield your eyes from the bright glare of fluorescent light escaping from the cracks, you have found our house. Once inside, do not be surprised to find screaming children jumping off couches or hitting one another with pillows. Whatever you do, do not touch Bubba unexpectedly, unless you enjoy a blow to the stomach, and bring ear plugs if you don't like loud noise. Please know that our house is clean, even though it might not look that way, and do not place anything on the floor that you do not want to be licked or in Bubba's mouth. Last but not least, do not stay for dinner if you want your food any warmer than it feels outside.

Renewed Faith

* Bubba got a hair cut and received his much wanted Mohawk!



Almost immediately after Bubba was diagnosed, I began having fears of public school. I saw him constantly in trouble because he couldn't sit down or in the Principal's office because he flew off the handle. I pictured a young teacher with black patent-leather stilettos and a polka-dotted black skirt, a wispy white scarf tied in her hair to keep her too long blond hair out of her face. She is always yelling at Bubba, telling him to sit down, be quiet, stop throwing things, or just answer the question, and, when thwarted, Bubba reacts as he often does, by screaming and losing all control. By the end of my day dreams Bubba is being escorted out of the room by the counselor as his classmates stare wide-eyed and open-mouthed and the teacher sits in tears, wondering what she could have done wrong.


This, I know, sounds absurd and a little wacky, but it has, nonetheless, been my fear. I have been constantly questioning myself about putting him in private school, especially since I have taught in public school. After all, Evander and I have always laughed at those politicians, school board members, and principals who are supposedly invested in the public but chose to place their children in private schools. I have been going back and forth on whether or not to allow Bubba to go to the public preschool or stay under his private umbrella where he is doing SO well.


All of these fears and questions are now being answered. Last night, I had dinner with some wonderful friends, all of whom are (or were) public school teachers. It was so nice to see everyone, laugh about old students, catch up on everyone's lives, and just enjoy one another's company. It felt great to be with a group of women who I would trust with my life, and, as I drove home, high on too much Dr. Pepper, it hit me.


These are the very women that would teach Bubba. These are the same ladies that would watch over him and keep him safe when I wasn't there. They are all some deviation of me. We all share a common thread, a love of teaching and of children. All we want is for our students to succeed. Why, then, if I trust these women so much, wouldn't I trust them with my child?


Suddenly the stress began to slip away. I instantly knew that Bubba's diet would be scrutinized with every bite and his anxiety wouldn't go unnoticed. He wouldn't be seen as a "bad kid" but as a child that needs a little extra love and attention. That is why, on October 1 @ 8:30, Bubba has an appointment to be evaluated for PPCD (public preschool for children with disabilities), and, if approved, he will attend.

Progress Note

Bubba continues to amaze me with his progress at school, at home, and in therapy. I'm not sure what is most amazing to me, so I will go in order as they are listed.

Bubba has attended Under the Umbrella for a little over two weeks now and has made unbelievable progress in such a short amount of time. Much credit can be given to his fabulous teacher, Ms. Super Mom (How she raises two children under 5 and teaches special needs children while her husband is deployed is more than enough to give her this title). Ms. Super Mom has a son in Bubba's class, so she understands his needs on a more personal level than most others would. She is also patient and calm, nice and easy going, and she is genuinely interested in every child. With her help, Bubba has begun to need Lambie less, has become slightly more comfortable in social situations, and has improved his attention span and ability to follow directions. The other day he said "Moo! I'm a cow!" Which is a sign of imaginative play we haven't seen before. He is also learning his colors and alphabet.

At home, we have seen great strides, as well. He now sleeps through the night (yes, 4:30 am wake-up counts as through the night) and seems to "look out" for the Baby a little more. We are now able to wash his hair (with the help of a picture chart) without severe trauma and can occasionally brush his teeth (maybe twice a week) without a tantrum. He tries to use complete sentences (3-4 word phrases) 50% of the time while at home, and we continue to encourage him to use them more often. He is eating much better and has gained even more weight. He is currently on antibiotics to "heal his gut", and I think it is really helping him. He is really making an attempt to use the potty, but just isn't ready yet (and that's ok).

Bubba's speech and occupational therapies have done a lot of good for him, too. He recently had his 6 month occupational therapy evaluation, and I found that he has met 5 of his 10 goals that were set for him back in January. With our OT's help, he is now able to remove his socks and shoes without help and attempts to remove the rest of his clothing. While he still has trouble putting clothing on, he does not scream each time a shirt goes over his head. He is able to better tolerate dry textures (sand, birdseed, grass, etc), but still has a problem with wet ones. His is, though, trying very hard and is exhausted after his therapy is over.

After speech therapy today, his therapist told me that she is very impressed with his progress. He is also using 3-4 word phrases with her and is responding appropriately to What and Where questions. Bubba never minds the speech homework we receive each week and seems to retain the information quite well (which could be good if he is actually retaining it or bad if it is the verbal stimulation coming out). He tries very hard to "use his words", but sometimes needs prompting.

We started on this journey shortly after he came home from Guatemala, not knowing what was in store. So far, I could not be happier with his progress and his amazing effort and resilience. He has come so far in such a short time, and it is amazing to see what could be.

This is Bubba after having his hair washed.

Bubba and Baby in the bathtub.

The Great Debate

This is not a topic to be discussed at a business dinner or even a casual gathering of friends. It is something so controversial that once happy-go-lucky people become angered and defensive. Everyone has a definite side and a definite opinion on this topic, but few will bring it up. It is something that I am often asked about, since our diagnosis. The controversy lies in a singe question...Do vaccines cause autism?
I have said for years (even before our diagnosis) that I believe they are a piece to the puzzle. Does one vaccine single-handedly "cause" a child to become instantly delayed or regress moments later? I would say no, but I will not say that vaccines have NO role. I believe they may be the trigger for something greater, and my thoughts have been confirmed over and over again. Only now, I have the actual science to back it up.
In March of 2008, the Court of Federal Claims ruled on a case involving a little girl, named Hannah Poling. This little girl began showing autistic tendencies at 3-months of age, after receiving vaccines. The court agreed that she had a pre-existing mitochondrial disorder that was aggravated by the vaccinations. This information and ruling is ground-breaking. The only problem is that the court sealed the records, prohibiting scientists and doctors from investigating and potentially helping millions of autistic children.
In the end of March of 2008, Julie Gerberding, head of the CDC appeared on Dr. Sanjay Gupta's TV show and proclaimed that vaccines can trigger autism in a subset of children. The only problem with this proclamation, no one noticed. The only people who took note were the parents, doctors, and scientists already immersed in the autism community.
In August of 2008, Bubba, Evander, and I traveled to Austin to visit the Thoughtful House clinic, where Bubba was diagnosed with a similar mitochondrial disorder that affected Hannah Poling. Bubba has received all of his injections and will continue to receive them, but I am more cautious.
We will be receiving a special flu vaccine this year, without thimerosal, and if I were to have another child, I will carefully consider each vaccine that is given. From this point forward, I would suggest making sure your child isn't the slightest bit sick before a vaccine, and, if he/she is underweight for his/her age, please ask if you can defer the vaccine until the next well baby visit. There are also thimerosal-free vaccines that can be special ordered. It might be a pain for your pediatrician, but it is worth it.
On a final note, I would like to say that I support all of those parents who have chosen not to vaccinate. Had Bubba been biological, we may have made the same decision.

Baby's Big Day

Today began as any other, with Bubba scurrying through the house before 5 am and the Baby eating out of Evander's daily cup of yogurt. This day, however, is a special day. Baby went to school (mother's day out) today and will stay from 9-2.

Although it was dreary and wet, Bubba was in an unusually pleasant mood as the three of us drove to his little school. He did not fall asleep this morning, so we had a relatively quick drop off but were still running behind. The Baby and I raced to the car, dodging slimy weeds and cloudy sidewalk puddles (and the unsuspecting dad I almost tackled), hoping we could make it to her school in time. We, of course, were late!!

I wheeled into the parking lot, straddling the lovely yellow line, jumped out of the car, jerked up her school required basket and unbuckled the car seat belt like a pro. Before I knew it, the Baby and I were sprinting across the parking lot and through the glass doors. I, then, slowed the pace because I thought she might be a little anxious. We carefully placed her belongings down in the same neat row as her classmates and headed in the room. By this point, I was holding the baby as she exclaimed "OH, BABIES!!" (as she pointed to her peers)

Her teacher looked at me and said "Whenever you are ready, I will take her and you can go." That is when I realized I was holding onto her so tightly that she could barely move, much less get down and play. I quickly said "Oh, of course!" and handed her over as I gave a kiss and told her I loved her.

I was expecting a few tears and a little whining at least, but what did she give me? "Bye, bye Mommy," she said as I was escaping out the door. I was holding back tears as I jumped into my car, but she was fine. I think she will be ok!

Home Bodies

Each day I learn something new about my children, and each day I am amazed at what they have taught me. While this revelation is not all that exciting, it is something new. I recently realized, and my mother has confirmed, that my children are home bodies.
While many children enjoy walking through a crowded mall, riding the colorful carousel, playing in the germ infested play area, and buying new things, my children want to get what they came for and leave. Don't get me wrong, they love to go places, but they do not like to linger. Bubba and the Baby would much rather be at home squeezing Belle too tightly or chasing one another around with a broken blinds rod. Baby would prefer to be a good mommy to her babies, while Bubba plays cars all day, instead of heading over to Peter Piper Pizza for a crazy game of Whack-A-Mole.
I'm sure Evander and I have played a large role in their preference to stay at home, and I also know that autism plays a role in Bubba's comfort with home. Evander and I have always enjoyed lounging on the couch watching TV to a night out on the town, and our children seem to have followed closely. I also think my desire to keep Bubba's routine has led to this as well.
In order to have as little stress as possible, Bubba needs to follow the same exact routine every day. One slight variation and the day is potentially shot. For instance, even if we were to finish breakfast at 8:30 am (that would be extremely late for us), he will still ask for a snack at exactly 9:00 am because that is his routine. He thrives on predictability, and without it, comes sometimes devastating consequences. I understand that we have to "live a little" and everything "isn't always perfect", but I have to strive for that each day in order for Bubba to have a good day (and that is my job, after all, to have happy healthy children). For someone to shrug off his need for routine, obviously has no idea what we are dealing with, and hasn't lived through a "broken routine" day.
Our next big adventure away from home will be at Thanksgiving when we travel to Colorado. I am very excited and nervous at the same time. Bubba doesn't fly well (he gets very anxious with the unexpected, the strangers everywhere, and the inability to move around), so I purchased a shirt that says "Autistic today, Genius tomorrow" for him to wear . This way, I figure, all of those "innocent" yet extremely aggravated bystanders who look at us as though Bubba is a very bad kid and we are irresponsible parents will be instantly informed, and I won't have to make rude comments or answer ridiculous questions like I usually do.
I think both children will be happy because we will be staying with our Aunt, not in a hotel. As long as they are "at home" they are happy!