The Autism Monster

February 11, 2014


4938_23My son, Darren, was born July 4, 1999. My labor was long and hard on us both and, after two and a half days, it ended in an emergency C-section. He had swallowed meconium and the umbilical cord was wrapped tightly around his neck. Despite both of these things, he seemed to be just fine, however, he developed reflux, which remained his entire first year. Once Darren started eating food, the explosive diarrhea began. I took him to the doctor, who then referred us to the gastroenterologist.

While we were being seen for Darren’s tummy problems, it was time for his 12-month shots. Afterward, my son completely disappeared. He went from being a sweet, playful, giggly little boy who loved books and toys to a completely miserable, little drooling potato. He stopped walking and regressed to crawling, lost all speech and spent the majority of his days crying or hiding in my neck. As a mother, I knew something was terribly wrong, but knew not the first step to take to figure out what the heck was happening to my little boy. He was the first baby in our family so I had no one to compare him to. Everyone thought his behaviors were so cute and that it was normal for boys to talk later than girls.  Perhaps, but is it normal for them to lose the words they previously had? NO!

Since Darren’s tummy was so sick, I don’t think we saw his regular pediatrician until his 2-year well baby check-up -- the day that changed our lives forever. It was in that little room that I learned my child had autism, a word I had never heard before. We were so very fortunate that in 2001, we had a smart, capable pediatrician who knew the signs and symptoms of autism, and thus our journey began.

Next, my son received a diagnosis from the Regional Center of moderate to severe autism with a deferred diagnosis of mental retardation…OMG!!!

I refused to go to support group meetings because I perceived them to be a group of people sitting around crying over their coffee, and I didn’t have time to cry because I had to fix my kid. (I had never heard of TACA at this point, but wish I had, because I could’ve used some of the business cards for outings!)

Throughout our journey, we have continually been put in the right place at the right time, and met the right people and therapists who guided and taught us what we needed to know and do to keep moving forward at a remarkable pace.

gfcf pixWith Darren, once we started the GFCF diet at age 2 1/2, steady progress was made and his bowel problems resolved. Yes, friends, normal poops! Around age 3, we began The Listening Program and his speech returned fairly rapidly. Stims, rigid behavior and inability to function in new situations as well as sensory dysfunction remained issues that we addressed through occupational therapy, speech therapy and ABA.

Our family could not afford biomedical treatments on just my husband’s salary.  It was painful for me to know what was out there and not be able to provide it for my son.  My wonderful brother-in-law gifted us $10,000, which we dedicated to Darren's treatments. When Darren was 9, we found a DAN (now MAPS) doctor in our area and began testing for deficiencies and metals. Surprisingly, his metal levels were low; we suspect this to be because he did not fully digest the provoking agent DMSA.

We began HBOT therapy and by the fourth session, my son could tell that he was getting better and said so. I knew this to be true after the first session as his attention was better and he did not stim on the way home. After 40 sessions of HBOT, adding in vitamins that he is lacking, and implementing a consistent schedule -- book in bed at 8:30, lights out at 9, up at 6:45 -- he is able to function at school with minimal assistance, is social, has friends, asks questions for information like, "How was your day at work?" and then probes for more details.  He is sensitive, even crying when we told him would have to put our dog to sleep. “Oh, I will miss Charlie when he is up in Heaven,” he said -- a nice, appropriate, perfectly formed sentence.

4938_19Darren’s sensory system has aligned so he is more accepting of new foods, even saucy things that used to make him gag. We can go to the movies, to parties, to the grocery store, to the park, or for a walk, and I do not have to worry that he will wander or run off. He follows the rules, and complains about them, too. Darren LOVES his parents and says so. He misses people and asks if we can go see them. He has desires and hopes and dreams, too. For the past three or four years, he has said that he wants to work with the Emperor Penguins in Antarctica when he grows up -- that's his wish and he's sticking to it. He is funny, theatrical, and participates fully at school, though he still hates to write.  Darren doesn't see the point in writing if he can answer the question VERBALLY!

I enjoy being around my son. He is a true joy in my life whereas once upon a time, I felt like so many of you, “Why me? What now? HELP!” It does get better. Your child can get better.  Do not give up on the diet, it DOES work! Any small infraction sets my son back years. It took a good six to nine months to see the full effect of the removal of gluten, though dairy was immediate. I saw his anxiety level melt away and he began to smile again.  And he stopped the constant j-j-j-j-j-j noise he made.

With biomedical interventions, sometimes we have to get “samples” from our children to test, which can be tough. Recently, our MAPS doctor tested Darren’s yeast level.  It was still high even though we had him on some pretty potent probiotics. She said we needed to get him on a prescription antifungal and our regular doctor could prescribe this. I took my son and the test results to the doctor, who looked at the test and me cross-eyed and said he would need further testing prior to prescribing the medication.  Great, more time to wait. What’s worse is it was a stool sample they needed, and that’s not an easy feat.

Six weeks later, I was making dinner and I call to my son, “Darren, have you done your pooper yet?” I hear him sound a bit nervous and say, “Yeah.”  Beginning to get upset, I said, “Darren, when did you do it?” He was still confusing ‘when’ and ‘where’ and said, “In my bathroom.” So of course I gave him a stern lecture about needing the sample and why.  He proceeded to debate with me about the fact that his tummy didn’t hurt and that we didn’t need to do the test.  After about five minutes of back and forth, he came into the kitchen, put his hands up and said, “Okay, mommy, let’s practice our calming exercises. Come on, you can do it. Take a deep breath in and out.” Naturally, I continued my ranting, so in desperation he said, “Okay, I’ll do it first [deep breath in and out]. Aaah, see I feel much better. Now it’s your turn.” He would not relent so eventually I stopped and took a deep breath in and out. Feeling better, I felt a huge swell in my chest and called him over to me. I hugged him and told him just how awesome he was. He looked up at me and said, “I’m glad you are feeling better so we won’t have any more of those mad conversations.” Gotta love that kid!

IMG_1706I recently got a tattoo on my right shoulder and bicep to celebrate where we are today in our journey. Even five years ago, I could not have imagined this place. Darren will always have autism, but I am thrilled to say that he is as close to a typical child as if  autism had never stolen him away from us. The tattoo symbolized the autism journey,  beginning with the messy pile of puzzle pieces that represent the confusion and desperation when you are first handed the diagnosis. Then, as you begin to figure out things that help and your child begins to progress, the puzzle pieces begin to align and your child, or in this case, the caterpillar turns into a butterfly, representing what they were always meant to be.

It is my sincere hope that all of our kids will recover someday. I will continue to work with my son to make sure he has the best life he is able to, and it is my wish that all of the parents out there never give up and never say, “This is good enough.” Keep pushing. Keep trying new things until you can no longer see a glimpse of the autism monster inside your child. It is never too late! I thought that at age 9, my son was as good as he was going to get.  Man, was I wrong. I am so incredibly glad that I didn’t settle. I would have missed out on the special person he is today.  More importantly, HE would have missed out on the special person he is today!