Monday, November 4, 2013

Break Through

Did he really just say that?

I ask myself this question frequently throughout our days now. "Did he really just SAY that?" During the 30 minute conversation that I had with Jonah after picking him up from school tonight, I asked myself that question at least 60 times. 

That's right, folks! I'm having 30 minute conversations with my son! 

Just so you know, these are not just casual conversations where I ask him questions about his day, and he gives me short quick answers. These are conversations where I ask my son what happened at school today, and then I can't get a word in edgewise for at least the next 30 minutes. I just sit there laughing at how amazing all the little details are becoming. 

He's telling me stuff that his friends say, who made good choices and bad choices, who he went to PE with. These are all details that have been emerging in his evening dialogue with me for the past several months now. The dialogue started small. I would ask him if he had a good day, and he would only answer with a "yes" or "no". 

Tonight when we walked through the door, Jonah stopped to check out a couple of his school projects on the table, and said "Whoa. It's my jack o lantern. I made it at school. Mommy, mommy. Look mommy. And it's a bat. Oh man! Where's my spider? I made a spider. I must have left it at school." 

He no longer refers to himself in third person as of about a month ago. He's using "I", "me", "my", "mine" appropriately.  Huge step in intelligible speech.

There is still difficulty in understanding some of his speech. Still some mispronunciation. Still some difficulty in building sentence structure. I couldn't give a shit about all that because my son is finally talking to me.

My Jonah is talking to me. Not at me, but to me. With me.

I can think back to a time not so long ago, When Jonah was almost 3. He said "Wow" at some bubbles during an ABA session. I thought to myself then "Did he really just say that?" That was exciting. 

As Jonah got older, he learned how to ask for things he wanted like milk. This is how it went down most of the time:
  1. He would just come up behind me and squawk or grunt. 
  2. When I would ask him what he wanted, he would answer quickly "milk." 
  3. I would have to say "Then, how do you ask?"
  4. Sometimes he would begin whining or grunting in an attempt not to have to say it, but I would push him until he asked...
  5. "I want milk, please?"
And, I would think, "Wow. Did he really just say that?" I was grateful for any words that came from his mouth. But there was no Jonah behind the words that he was trained to say, or the answers he was trained to give. His expression was always shining through in his cute mannerisms, looks, gestures, dancing, singing, vocal stimming, but not a lot of expression in his words until a couple years ago. 

A couple years ago, I was so convinced in the improvements I noticed in Jonah's behavior just by making organic & unprocessed foods a priority in our diets, that I dove head first into CEASE therapy.  I'm sure most friends thought I was losing my mind. Here we are over two years later, all of the hard work is paying off. Every day, I think "If he doesn't get better than this, I'm happy." But every day just keeps getting better. 


Wednesday, September 25, 2013

Busy, Busy, Busy

It's officially fall. I noticed last night that it was dark already at 7:30. Wow, that happened fast! We will be apple picking on Saturday (already). I can't believe how fast this year as flown by. We had a great summer, took a nice long break from CEASE. It gave Jonah a chance to rebalance again after finalizing the Hib clear. 

We are just about 4 weeks into a new clear. PCV or Pneumococcal conjugate vaccine. So far, I couldn't be more impressed by the slow gains I am seeing. He is becoming more independent with everyday tasks like flushing the toilet. Hey... I have to be grateful for the little things, right?

Also, continuing to communicate more consistently and clearly.  He is vocalizing his thoughts, observations, and imagination more consistently and more clearly. He is maturing more. I've noticed huge leaps in his reading ability.  There is just so much good stuff developing over the past few weeks. So far, not too many aggravations or behaviors. I have noticed one or two nights of increased sweating, and he has been really itchy, although that seems to be diminishing over the past few days. It makes me so happy to see him doing so well. 

On our last appointment with Jonah's HP, we decided that we would clear PCV and then antibiotics. These next two could be big for Jonah. PCV is the last of the 4 shots he received at 18 months. Those 4 set into motion a prolonged regression that eventually led to months of chronic illness, decrease in appetite, and severe skin conditions. He was prescribed antibiotics for the skin condition around 27 months. 

I keep replaying those months over and over in my mind, trying to remember every piece of Jonah during his regression. He was still starting to say new words just before the antibiotics. I remember one morning when he was scratching himself like mad, and I was trying to help him. He said "Itchy" for the first time that morning. He was given antibiotics about a week after that. It was another 6 months after before I heard him say another word. 

So, once we get through PCV, we tackle antibiotics. And then we will see. The more Jonah talks, the more anxious I am to meet more of his true-self. 

Sunday, July 14, 2013


I had a conversation with Jonah tonight during our 5 minute cuddle time that wasn't possible before. To think that a couple years ago, he wasn't talking like this is one thing, but it's another to think that he wasn't even talking like this a month ago. A month ago he was saying things that were blowing my mind. 

The past two days, all he wants is to "watch school songs on compuper." There are Jonah-isms in our house that our family all have come to love. Watching school songs on the computer is about the sweetest thing ever because he cruises around YouTube watching stuff like this: 

He now knows how to type in the names of most of the songs he wants to watch, and when he doesn't know, he asks me for help, and I can spell it out for him while he types it in. Then he sings and does the little dances if there are any. He likes to cuddle and ask questions like "Wha-isit?" Jonah-ism for what is it. 

Tonight when we cuddled at bedtime (5 minute routine every night when he is getting tucked in), Jonah asked about going to touch the twinkly star (like the little owl in the video clip). At this point, it dawned on me that my poor urban child has probably never really seen the potential of the stars without the city light pollution. He loves the moon, but I doubt he's seen that many stars. I have to start traveling with him, and am hoping to plan a one-night camping trip in the fall whether I can afford it or not. 

He told me "Jonah want to go fry up in va hewicopter and touch va twinkwy stars." Wow! Imagination! 

A short minute later, I was wiggling his two bottom-front teeth that are loose when we got to talking about the tooth fairy. In an effort to prepare him for losing his teeth (something that he was scared of) I introduced him to the tooth fairy. Judge me if you want, but it works for him. He's really excited about it, and told me so tonight. 

Me: "You know Jonah, the Tooth Fairy lives on a star."
Jonah: Jumps up from seated position with excitement and says with a big smile "Yes. And va toof fairy is yobo* come down on a hewicopter yobo get my too - thh**." 
Me: "Oh really?! The tooth fairy flies on a helicopter?"
Jonah: "Yes. And va toof fairy is going to fwy on hewicopter yopo get your too-thh and bring presents."
Me: "That's right Jonah. The tooth fairy flies on a helicopter and brings presents and takes your tooth."
Jonah: "And yobo bring Jonah's too-thh to thhe stars. Ehhh. Jonah touch twinkly stars?" 
Me: "Jonah, do you want to go ride in a helicopter someday?"
Jonah: "Yes."
Me: "Well that is something we are going to have to make happen." 

There is more and more reason to celebrate how great things are turning for us. I think we have finally finished with the Hib clearing. (We were running close to 5 months on the Hib clear.) Summer is here! I have a normal schedule. I'm better rested, and working on developing a consistent schedule with Jonah. The aggravated behaviors have virtually disappeared. He is still demonstrating them at times, but they are much more manageable than before. (Another reason why I am better rested.) 

I am happy to feel happy. To feel things lining up, opportunities for both of us falling into place. Is it just CEASE helping Jonah? I can't say for sure, but I would certainly be surprised if it wasn't. There would really be no explanation for the growth that I am seeing in him aside from his diet, but we were seeing gains before going gluten free. I feel a GF diet has definitely been beneficial for him. 

In general, Jonah is sharing facts about his day with me, with details that he wasn't able to express before. He is showing more attachment for others, like Imo & Scotty, and friends at school. He is playing by himself. Not just sitting on the floor, or rolling around and looking at objects, scattering and throwing objects. No. He is now actually playing. Like on the 4th of July, when he pulled out a board game and asked me to play. I told him that I needed to make treats for our 4th of July party, and he asked if he could play by himself. I said sure. The next thing I saw was Jonah, sitting on the floor with all the cards and fake money spread out before him, as he vocally prompted a sequence of actions. It was 'The Game of Life.' A game that we have tried to play together, but since it is meant for a 9+ audience, Jonah's maturity is not at a level to understand and play the game thoroughly. Instead, he created his own little system. 

These are slow, steady and consistent gains. If this is as good as the gains get, they have exceeded my expectations.    

*To fill you in on some Jonah-isms... "yobo" is Jonah's way of saying 'you have to' as an instructional term. Since he has difficulty in the maturity of his speech, he will often say "yobo go..." as a statement when talking about his schedule. If he is talking about another person, he will still give you the direction like "Yobo go sit down." He is in the early stages of learning how to reference himself appropriately as he often talks about himself in first person. He is working on correcting himself while speaking... "Jonah got 6. No. I got 6." These are all very recent and increasingly consistent gains that we are seeing. While we have always worked on helping him to correct his speech, Jonah was often intimidated by it and would get upset or angry after trying a few times and failing. Now, he is prompting and correcting himself. The "yobo" is a term that he has self-corrected a couple times, and when it disappears from his language as so many of the Jonah-isms are starting to disappear, I will miss the sound of it in his sweet little voice. (Incidentally, yobo is a casual term of endearment in Korean and a word I grew up familiar with thanks to my grandparents.) 

**(That thh is to emphasize the effort Jonah is demonstrating unprompted to more clearly pronounce the sounds he has difficulty with. He normally pronounces the th sound as an ef sound.)

Monday, July 1, 2013

How do I prepare for that?

We have been on the Hib clear for just over 4 months now. Jonah has gone from never calling out to me for attention, to constantly calling out "mommy, mommy, mommy." Now, over the past two days, it's just "mom." 

Going from "mommy" to "mom" is not something I'm prepared for. He has two loose teeth. I'm not quite prepared for that either. What's the going rate for the tooth fairy these days? When I was a kid, you were lucky to get a $1 bill. 

I'm not prepared for my baby to grow up. 

So fast. 

Tuesday, June 11, 2013


Jonah has had a movie revival with the Pixar/Disney film "Brave" over the past few days. I have to admit, this flick made me cry when we went to see it in the theater the first time. He talks about going to see the movie and the friends that we went with. Evidence that he is now able to express his memories from a year ago.

Tonight when the movie was at the finale, Jonah started getting really emotional. His eyes started to swell, and his bottom lip started to pout out (the sweetest, cutest, most precious sad face you could ever imagine). He looks at me and points to the movie, voice cracking, "That's her mommy."

I said, "Yes, Jonah. That's her mommy. Do you feel sad because she loves her mommy?"

He said "Yes" and started wiping at his eyes.

I told him it was okay if it made him feel like crying. So he cried. I scooped him up and he wrapped his arms and legs around me so tight, buried his face in my neck, and cried so hard. He has so much empathy. He said "I love you mommy."

Just another amazing difference I see in him that I wanted to share.

Wednesday, May 22, 2013

The Grass IS Greener On The Other Side

I am happy to report that I think we are starting to see some more small breakthroughs to round out the end of this Hib clearing. While he has been doing incredible at school, Jonah has been demonstrating extremely difficult behaviors at home for the past several weeks. I am happy to report that it has been 41 hours since his last break down.

I'm celebrating!

Jonah has been able to indicate to me on a few occasions over the past couple weeks when he is beginning to feel aggravated. He is answering my questions very promptly and politely. Example:
Me: "Jonah, do you want some milk."
Jonah: "No thank you, mommy."
He answered so promptly! No delay in response!! I only had to ask him one time!!! The regularity of his responses are increasing dramatically. Before, I would have asked this question several times, and then prompted a response after the 3rd time. His reading ability has picked up dramatically! Reading speed has increased, and he is now implementing phonics. He is starting to read signs out in public. He is sounding out words he would not have been able to sound out a week ago.

Lots of talking! Lots of expression! This morning he wanted to go out to the garden, and look at all our vegetables growing. He loves rubbing his fingers on our tomato plants, then holds them up to me and says "Here, mommy. Smell the tomato plant. Mmmm. It smells so yummy." As he rubs his belly in a circle.

Just the sweetest!

I'm feeling so much better as well over the last few days. My energy and motivation is slowly picking up; sensitivities and anxieties are diminishing. There were fleeting moments over the past few weeks when I thought I was autistic. It's like the fog is lifting from around us.

The promise of recovery is possible. I'm so grateful for how far he has come.

Sunday, May 12, 2013

Grief & The Rantings Of A Woman Pissed Off At The World

CEASE Update... We are still on Hib. I've lost count of the number of weeks, and I don't feel like looking back on my notes. This has been a stressful clear for both of us over the past few weeks. We have finally moved up to 10M dosing and I think we will be finishing this clear by the end of the month. Fingers crossed.

I am ready to move onto a nice little break from CEASE. I think I will take 4 weeks off this summer, and really try to get a feel as to how his GF diet is benefitting him. We went into GF transition right around the same time we started the Hib clearing, and it's been hard to determine what is diet, and what is CEASE as far as the gains that he has made. I am hoping to refine our eating a little bit more. I've been researching all the diets that claim to be incredible for autism, and I'm not sure which path we will take yet.

I've been looking at GAPS for the past several months now. The before GAPS/after GAPS videos of autism kiddos online has definitely been compelling me. However, I joined an online GAPS group, which has probably been the best source of information. Concerns have been raised about the diet for me by GAPS dieters discussing issues like tooth decay or hair loss. Something about both of those potential side effects is an indicator that it might not be the best choice for Jonah. I think we will skip the GAPS train, although I do like the principles behind gut and psychology. We will likely continue to remove grains slowly, work on reducing sugar and eliminating casein for a bit to see how it goes. I am game to try it in hopes that it helps Jonah more. If it doesn't, at least I know. I don't think Jonah has a sensitivity to dairy, but then again I didn't think either of us had issues with gluten. We clearly did. I can still hear his sweet little plea "bread?" when we were going through yeast die-off. This kid didn't really like bread to begin with, but he asked for it constantly during die-off. I craved it constantly, so I understood immediately what he was going through.

As difficult as the behaviors with the Hib clear and DTaP before that have been, we have been seeing some tremendous gains. When he isn't aggravating, I've been catching these glimpses of a normal kid. Normal- as in nuero-typical. Speech, although still difficult to understand at times, has been sounding clearer. He's been super motivated for interaction with me via playing board games again, or tag. Every evening when he comes home from school, he reads 5 books for 10 chocolate chips. He's been drawing and demonstrating imaginative play. He loves to help make his lunches and is showing more signs of independence. He is generous, sweet, and compassionate. I get this peak of gestures and expressions that look and sound like things a normal kid will do. It lasts for just a few seconds.

And then he gets a maniacal look in his eye just before he giggles, darts and lunges toward the kitchen counter in hopes of grabbing the glass of water next to the sink and hurtling it across the room.

And then, I get PISSED OFF at the world. The world as comprised of a closed-minded subset of people that makes up the majority of the American culture. The people that follow doctors orders and eat nothing but Special K for breakfast because they are on a diet. The people that have a prescription for EVERYTHING. The women who drive luxury cars and carry designer purses, but are concerned about the price of organic foods. I could go on. This is the mindset that I was a part of and I hate it. I resent it. This is the life that brought me to where I am today as a mother. This is the lifestyle that robbed Jonah of a normal childhood. This is the commercialized, processed, over-prescribed, standard-American-B.S. that has robbed (and will continue to rob) countless children of a normal life.

I get so PISSED that my child has to go through this. That my child is sick. That my child was sick and I didn't even know it. 

"It's just kids being sick." 
"It's just eczema." 
"Kids are picky eaters." (He wasn't picky. He just wouldn't eat. He wouldn't eat ANY-F-ING-THING!)
"Kids get colds all the time."
"Some kids don't grow much between 2 and 3 years of age." (2 lbs?! That's it? Is that normal? Sure didn't seem normal, but why didn't I question it!?)

I was so stupid. How could I have been so stupid? The whole reason I chose our previous pediatrician was because of this as follows... I asked him about the concerns regarding mercury in vaccines. At the time, I didn't know much about it, and had only seen and read small little blips about it in the mainstream media (which really means that even though I was asking about it, I had no idea what I was asking about). He reassured me that vaccines were safe, and that they had low-dose thimerasol vaccinations on-hand. Well, that sold me. 

At one of his vaccine appointments, the nurse complained that I chose to go with the low-dose thimerasol vaccines because it required 5 injections instead of the 3. I actually rolled my eyes over at my friend who had accompanied us on the visit and responded "Well, it's better than risking my child develops autism." 

I was so fucking stupid.