Friday, May 25, 2012
As I sit reading to Xander this afternoon, I suddenly felt like that “Little Engine that could” that I am reading about is me. There I am…reading this Watty Piper classic to my almost 2 year old son. It’s his favorite book. And I can understand why. In the story, the little train (which could be Marley) stops and cannot go another inch. The little train asks the passenger engine, the freight engine and the sad, old engine for help. But, they say, “I am a very important engine indeed. I won’t pull the likes of you!” or “I am so tired. I must rest my weary wheels. I can not. I can not.” Finally, the little train asks a little blue engine to pull them over the mountain into the city. “I’m not very big said the little blue engine. I have never been over the mountain.” “The very little engine looked up and saw the tears in the dolls’ eyes…..Then she said, I think can. I think I can. I think I can.” This is how a mom feels when she is determined to make the impossible happen.
After being turned away for any real help by neurologists, allergists, and psychiatrists, I knew it was me that would have to pull this train over the mountain. And pulled I did….for years. I pulled that little train with medical interventions, treatment of her damaged GI tract, detoxification of her little body, nourishing her with special diets and healthy foods, hyperbaric oxygen treatments and the standard Speech and Occupational therapy. Yes, I got tired, but never lost my drive and desire to pull this sweet little train over that mountain into the city where all the children lived.
Just this past week, my little train made it to the summit. I had a meeting with Marley’s IEP team at her elementary school. Her meeting was comprised of her special education teacher, her mainstream teacher, her speech therapist for this year, her speech therapist for next year, the autism integration specialist, the occupational therapist, a resource room teacher and Marley’s case manager. The meeting began with introductions.
“Kelly, we would like you to meet our Resource room teacher and our speech therapist who handles kids in the mainstream classes grades 3-5.” My mind was racing…does this mean what I think it means? The case manager when on…”The overwhelming consensus is that Marley be placed in a mainstream classroom full time for third grade. We will provide her with resource room help and an IEP, but we believe she is fully capable of being mainstreamed at this point.” I swear, I almost cried. This was it…the culmination of all Marley’s hard work at Brain Balance this year. I knew she was ready…but the fact that they saw it too was wonderful.
Just this morning, Marley’s speech therapist told me “I am very happy for Marley. Usually, if kids are placed in a self-contained class, it’s very hard for them to get out.” And I know she is right. Simple inertia takes over and kids get used to a certain set of rules and expectations and to change those rules years into their education is difficult. But my goal had always been to get her mainstreamed using non-pharmaceutical interventions. This year, our saving grace was Brain Balance. A program designed for kids with Autism, ADHD, Dyslexia and the like. It works by strengthening the weaker side of the brain so it can work cohesively with the stronger side. For over six months, we did this grueling, labor intensive program. And it delivered. At the end of the program, my little train made it to the top of the mountain.
Then her speech therapist said to me, “I remember when she started at this school…she was…” then she stopped. I looked at her and said it. “Severe.” “Yes”, she said. “Severe.” My memory flashed back to her at age 5 when I had to carry her into the school while she was kicking and screaming just to go and sit in a tent all day. Those were the toughest days. When my little train was sick and scared and I was fiercely motivated to get her well. I would have done anything. Anything.
Next fall, my little train will be over the mountain and in the city with all the little boys and girls on the other side of the mountain.
“Puff, puff, chug, chug, went the Little Blue Engine. ….Up, up, up. Faster and faster and faster and faster the little engine climbed, until at last they reached the top of the mountain. Down in the valley lay the city. “Hurray, Hurray” cried the funny little clown and all the dolls and toys. “The good little boys and girls in the city will be happy because you helped us, kind, Little Blue Engine.” And the Little Blue Engine smiled and seemed to say as she puffed steadily down the mountain. “I thought I could. I thought I could. I thought I could. I thought I could. I thought I could. I thought I could.”
*For more information on Marley’s experience with the Brain Balance program, you can read my blog entry titled “Dream Big” at http://autismroadtorecovery.blogspot.com/2012/03/dream-big.html
Tuesday, May 8, 2012
It was 2006 and we were in the family minivan, driving up to NY from NC to see Dr. Bock again. I was nervous with anticipation. Dr. Bock was Marley’s DAN! Doctor and he had been right about everything so far. For over a year, he had been trying to convince me to try mild hyperbaric oxygen treatments for Marley. “She’s a perfect candidate”, he said. “She will benefit greatly because of both her brain bleed and her inflammation.” But I was hesitant…and mostly scared to try. I mean…this meant over an hour each session in a closed in space with changing altitudes that could hurt her ears. How would she handle it? And he wanted us to do it TWICE per day for a WEEK! Oh…and did I mention, it cost $175 per treatment! Yes---expensive and time consuming. But even after diet changes and supplementation, she still was not talking. She was not potty-trained. She was having meltdowns that scared us to death. And she was almost 4 years old! In my book, we didn’t have an option. We had to try. So we packed up our family of four, which included my husband and I and Marley and her new baby sister, age 6 months old and headed north.
Our young family stayed at my parent’s house about 1 ½ hours away from Dr. Bock’s office. We drove her back and forth from my parent’s house to the office twice per day for an entire week. Surprisingly, she did fine with the actual dives thanks to a portable DVD player with an unending supply of Sesame Street DVDs and daddy right in the chamber with her. I remember thinking this is craziness! Who in their right mind would drive this far…with two small children…to do a barely recognized therapy? It was exhausting for all of us. My parents tried their best to support us but they got to see first hand what living with autism really looks like. The ugliness at its worst. It wasn’t easy for them either.
On Friday afternoon, the last mHBOT session was done. The tenth dive was over. We were scheduled to drive home on Sunday. On Saturday morning, we were sitting on my mom's back porch and Marley was looking at a book…one of her favorite past-times. Then it happened. She said “Eh-O”. I put my coffee down. I stared at her. She said it again. “Eh-O”. Oh My God…She is trying to say Elmo! I praised her and drown her in kisses and she smiled at me. She smiled at me! She was proud of herself! We were elated. She had said her first word after the regression. And it was ELMO! I had waited so long to hear what her little voice would sound like. And there it was. Sweet as singing birds. Within a week after that, Marley was potty-trained. Yes…fully potty-trained.
All the way home we talked about how we had to get her more of these treatments…and fast! We found a place that was doing it in a city close by. We signed her up for 30 more sessions. Halfway through these sessions, I got a note from her preschool speech therapist. It read “I have never seen such remarkable progress, so quickly in a child before. What is going on? She is speaking in 2 word phrases now. She is much more engaged. Please let me know if anything has changed at home.” Oh yes, I thought! Something has definitely changed. I am getting my daughter back!
Hyperbaric treatments usually go in rounds of 40 dives. Then a month or two rest for the brain. Then resume treatments. In January 2007, we started round two with 40 more treatments. She was 4 years old. Her language was coming in slowly before but now it was coming in faster. She started using her words to communicate her needs and wants more often. She started “scripting” TV episodes. Her teachers reported her paying more attention to the things around her. The other kids, the computer, the art lessons. Then she started pretend play! She was speaking to Elmo on the phone saying hello and goodbye.
Now that she could talk, she could show me what she really could do. She was listening to her sesame street CD and she looked at me and said “5 more!” I didn’t know what she was talking about. Then the next song came on, and she looked at me and said “4 more”. I wondered if she was talking about the songs. I picked up the CD case to see if she was right. And she was. Indeed, there were 4 more songs left. She had done the subtraction to figure our how many more songs were left. Simply amazing.
By the end of session 2 at 80 dives, she was singing “the wheels on the bus” all by herself. And now that she could communicate, she was also telling me “tummy hurts….boo boo kiss”. This was opening up a whole new world for us.
At 100 dives, she was looking in the mirror pulling her hair up into pigtails which she had never tolerated before. I asked her if she wanted pigtails, she said, “yes!” and she wore them the entire day.
At 105 dives, she was back to preschool and I asked her what she did at school today. I always ask this question and had never gotten a response. This day she responded “Outside”. I was surprised. I said “Oh- you went outside today? What did you do outside?” She responded, “Sandbox, slide, tire swing.” Her clothes were full of blue paint. I said, “It looks like you did some painting too.” She smiled and said “blue”. Then paused and looked again at me and said “yellow”. This was my first ever conversation with my daughter.
At 115 dives, she started singing unprompted and without help. At 125 dives, we noticed she hadn’t had a meltdown in months. She started tolerating swinging on the tire swing with 2 other children.
At this point, we bought a chamber for our home because we saw the miracles it brought. We continued diving for years with amazing progress in socialization and language. My personal belief is that hyperbaric oxygen works wonders because it decreases the inflammation that is all too common in our kiddos with autism and it helps to detoxify the body. It also helps with making new connections in the brain at the same time. In my daughter, it likely also helped to repair the damage that was done by her brain bleed.
I will always look back at our “hyperbaric years” with a sense of awe because it was the intervention that brought my daughter back to me. And I will be forever grateful to Dr. Bock for insisting that we try it.