Tuesday, July 19, 2011

Regression and Recovery

A lot of people get really upset if you use the word "cure" with Autism, because we know Autism isn't something that can be cured and isn't something that just goes away or a child outgrows, if anything we see the symptoms associated with Autism get worse over time. With that said, there are those who claim they were able to help their child "recover" from Autism or claim that certain therapies can help "heal" a child suffering from Autism. Naturally, I've read many books on the subject because I want to know what's out there, if it's logical and makes sense, and most importantly, if it's safe.

I'd like to point out that I think the reason we haven't found the "one" cure / healing therapy for Autism is because every child who is diagnosed with Autism isn't the same. They won't have the same food allergies, they won't all be the same age, gender, and every child falls into a different area on the spectrum. What is the spectrum and where does my son fall on it? That's a great question. At times, if I were to answer that question honestly, I'd say he's on the mild / lightly affected side. For the most part, I wanted to believe my son was a "typical" kid with just a speech and language delay. Then there were days when my son was so far from "typical" I wanted to die from embarrassment or frustration or exhaustion. If I compared Ben to the typically developing two year olds I worked with as a preschool teacher, or to my friends / relatives toddlers, I'd have to admit he was very delayed, behind and immature. But when I compared Ben to child who displayed the stereotypical Autistic behaviors (toe walking, flapping, or more extreme symptoms like head bashing, etc) my child seemed "normal" and "healthy." When the time came for me to get a professional diagnosis (because you can only ask your friends and family for so long, "is this normal?") I received a few mixed thoughts:
  • The professionals at Early Steps said he wasn't Autistic but showed a couple red flags.
  • Our DAN! doctor, Dr. Udell said he was "on the fence" and Ben could turn out typical or could continue to regress, so we left with a "pre-Autistic" diagnosis.
  • The neurologist at the Autism clinic gave a 100% confident diagnosis of Autism (without any test, communication or contact with our son)
Personally, I think Dr. Udell hit the diagnosis right on the money. Ben was regressing and without a doubt, my husband and I believe that had we not intervened, Ben would have continued to regress down the path of Autism and who knows how severely he may have been affected. So what do I mean by "we intervened"? Autism is something that occurs inside a child's body - both mentally and physically. I say this because from everything I've read and learned, children on the ASD are not only mentally locked away in their own world, unable to make the neurological connections they need to develop and function "typically" in our society, but they also struggle physically with many health issues. Many times these kids on the ASD have digestive, gastrointestinal problems, struggle with diarrhea or constipation regularly, have reflux, vomiting or other dietary issues, allergies, low immune systems which lead to constant ear infections and colds, and many of these children are malnourished, underweight, have dark circles under their eyes and protruding bellies. These health issues can be painful for a child to live with and you know how difficult it would be to concentrate and learn when your tummy hurts or you feel sleepy (many of these kids also have sleeping issues - perhaps because they don't create enough melatonin) or the child can't focus because he/she feels drugged or drunk.

Ben struggled with all of the issues I listed above (no constipation, just loads of runny stools) and so we changed the foods we put in his body that were most likely the source of his body's health issues. By removing dairy and wheat, and eventually soy, potato, certain carbs and other foods he tested positive against as a food intolerance, Ben began to feel better, look better, and thrive both physically and mentally. The probiotics and vitamin supplements we added to his diet were a big bonus on top of the elimination of the foods we removed from his diet and together the impact was great. It did not happen overnight, and it continues to be a slow, but steady progress.

An overview of Ben's speech development to date:
  • At 15 months Ben had two words: "Duh" for duck and "Dah" for everything else.
  • At 18 months he had about 10 words, "tat" for cat, "doh" for dog, "ight" for light, "cookie," "juice," "appoh" for apple, etc but still no momma or dadda. He could point to all his major body parts and could point to every single animal we asked him to find in our Noah's ark book or for every item in Goodnight Moon.
  • At 24 months or 2 years old, Ben had only put together 2 words a few times. He said, "frey-fry" for french fry, "appoh juice" for apple juice, and once said, "offle hot" for "waffle hot." He knew a handful of animal sounds but said, "nya" for "lion" "gark" for shark, and for whatever reason said, "up" for "cow" ex: "Up. Moooo" etc.
  • At 26 months all the animal noises stopped.
  • By 28 months almost all language was gone. He said, "icesee" for "lizard" or "gucko" for "bathtub." Total gibberish. He no longer could point to his body parts when asked and had no patience to look through books or point to the items we'd ask him to find.
We started Ben's diet at 29 months. The first few days of Ben's new diet we saw major withdrawal symptoms and he had horrible meltdowns. At this point he had zero language. His only word was "mow" for "no" and it wasn't used consistently. Ben had last called me "dadda" two months prior when I had picked him up from school. He couldn't tell me when he wanted to eat, drink, was stinky, tired, or was in pain. He couldn't tell me if he wanted to watch a movie, go outside, color, play, etc. Every cry was a guessing game and I had to go through a checklist to determine what he wanted. He had poor eye contact and his eyes would glaze over and he would "zone out" often.




At 2.5 years old, he had never once called for me or yelled "momma" when he wanted / needed me.

A week into the diet Ben went through the "awakening" period where he seemed very aware, alert and the mental fog he often slipped under had lifted. During that second week on his new diet, he said, "up" for the first time shortly followed by "eat" which was another first. He continued to slowly but surely use new words and around the 25th day into the diet he regained all the animal noises and most of their names that he had lost over the previous 5 months. Right away he picked up his lost ability to point to all his body parts when asked and started getting back into looking at and pointing to his picture books.

At 30 months old, or a month into the diet he tried putting two words together: "Out. Side." Then followed "Papa House" "Light House" as well as learning to say new words all the time. He went from 1 word ("mow" for no) at 29 months to 25-35 words by 31 months. He also began drawing circles for the first time, whereas before it was only scribbling. My aunt, who spends the most time coloring with him, noticed how deliberately he was attempting to color inside the lines now.

At 31 months old, Ben gave his first kiss after being asked for one (before it had been more random) after that he continued to give hugs and kisses all the time. He reached 50 words after 2 months on the diet. Ben could now follow a simple task, like "go put that in the trash" or "pick up Momma's keys." Instead of grabbing his wrist and making him hold my hand, I could now ask for him to hold my hand and he'd willingly take my hand (even if he only held it for a minute or two, it was a start). Ben could finally say "watch" for wanting to watch a cartoon, "eat" and "drink" and well as say which food / drink he wanted when given a choice, or say "mow" for no. He would sign and say "nore" for wanting "more." Ben started saying "stinky" now and occasionally peed in a toilet.

At 32 months old, just before Mother's Day, Ben learned to say "momma" and for the first time began calling me all the time. He also started learning a few colors at this point and my husband took advantage of this new teachable moment and worked with him until he learned not only how to point to the color we asked him to find but to start speaking the names of the colors. The day the Neurologist gave us the 100% certain Autism diagnosis Ben put his first 3 word phrase together. While playing at the park he told me, "Rock. Yuck. Trash." then he threw the rock in the garbage can. Later that night while Nick was throwing Ben in the air and lifting him high to touch the roof, Ben said, "Dadda. Up. Touch." and "Up. Touch. Roof." We had seen so much progress in such a short time we wondered how in the world this neurologist knew Ben was autistic without performing any kind of test or even talking to him? We constantly wondered if we were in denial or if maybe speech delay all by itself can be defined as Autism.

At 33 months old, Ben began adding lots of two word combinations to his vocabulary. There was a short time between Ben just calling "momma" to him saying, "momma LOOK" and "momma sit" or "momma help" or when Dad tickled him too much or told him not to touch baby brother, Ben would come running to me crying "Dadda bop" meaning "tell dadda to STOP." My 11 month old Jonathan at this time said his first word "ight" for light. We began praising Jonathan everytime we'd ask him "where's the light" and he'd point to one and say, "ight." One day after I buckled Ben in the car to take him to school he pointed to the light on the side of the car door and said with excitement: "Momma! Look! LIGHT! See?" which was his first 4 word phrase ever. I nearly fell over and had tears in my eyes while driving him to school because for a second it felt as though we were just having a conversation! Before Ben was born I couldn't wait to hear his cry, because I just wanted to hear his voice. For over 2 years I literally had dreams of Ben talking to me, and now I'm finally able to hear this little voice communicating with me, not just screaming!

At 34 months old, Ben has used the toilet twice to go stinky. Ben finally learned how to answer the question, "How old are you?" and he proudly opens up two fingers and says, "Twooo" and even holds up one finger when I asked how old his baby brother is, who just turned one. Ben started saying, "Tank you Dadda" or "Tank you Momma" for "Thank you" and just this past week after we say "Love you Ben" he starting replying with a "fu fu momma" or "fu fu dada." It's the cutest damn thing in the world and if those sweet little words aren't healing our broken hearts then I don't know how else to define a recovery.

Just had to add this video in: The only time Ben ever "flapped" his arms is when mocking how baby brother flaps his arms while babbling "ma ma ma ma":







Ben had a tiny bit of language and comprehension, lost it, and is slowly but surely recovering it. His stools are ever so slowly becomming normal. His language continues to grow and his comprehension continues to amaze us. We believe changing his diet made this healing process possible. What is working for us may not work for everyone, but changing Ben's diet helped us to take better care of him. I encourage everyone to explore the safe and natural methods for healing and recovering our speech delayed / pre-Autistic / Autistic kids.

*I will continue to update this post with time as Ben continues to grow!

1 comment:

  1. Thank you so much for posting this. My son never really spoke but he was babbling and making a lot of speech-like baby noises, then all of a sudden they stopped and were replaced by humming and playful screaming noises.

    This post gave me huge relief. Keep us updated.

    ReplyDelete