Therapy and the END

In September of 2005 my husband received word that he had been selected to pastor a church in Bowling Green Kentucky. This was a call that one could not deny as being Ryan's true call on his life. So with many tears we put our house in Rancho Bernardo, California up for sale. We had instant interest and within two weeks of that the market took a drastic turn. The real estate market had hit its peak and was falling faster than anyone could have anticipated. We had missed our window.

In a way I was relieved, hoping that our house would not sell and we could stay in San Diego, where services for children with Autism were fantastic! Well, in November we found a renter and agreed to be out of the house in two weeks time! We packed the UHAUL as much as would fit and left many pieces of furniture behind. Some things just can't follow, and sometimes I think my hopes and dreams are still there on that back porch. But we drove out and headed for the 40 to take us to our new home.

I plead my case within my own heart that Jacob would be elligible for services until he was three, maybe I could stay behind and move in with my parents until he turned three. His birthday was only two months away, and I knew that two months could make a HUGE difference! But I also knew that with all that I had learned, I could continue helping my son.

Somewhere in New Mexico along the miles we drove my cell phone rang. It was my husband several cars ahead of me. The words he spoke scared me to death. "Something happened to Jacob, he's depressed or something." What do you mean I asked? "He put a blanket over his head and he's just sitting there."

My heart sank, how does a nearly three year old with no language communicate his feelings about spending three days in a car, eating fast food every meal and sleeping in strange motels each night? How do you express your feelings about leaving the only home you've ever known and seeing your Nana(grandma) and Papa wave goodbye to you with tears in their eyes and grief in their hearts? How ould we have done this to our poor child?

My cries were met in Kentucky and my tears have turned to joy. More to follow.

Product Review Frigidaire Range ES340 BLACK

About a year ago my oven temperature knob broke off and permanently set my oven to 350 degrees with no ability to change it. The oven had been discontinued quite some time ago and there were no replacement parts available. I used my oven all this time adjusting cook times, not being able to justify a new oven. Mine works!

Well for Christmas I was given this oven and I could not be happier. This oven is a bakers dream. I chose black, it's a smooth top and I love it. The first thing I did wrong was try to use the oven for dinner the first night. Smoke and an overpowering odor filled my home within minutes. I called Frigidaire and much to my surprise got a live person! She instructed me that I should use the self cleaning feature before using the oven feature to burn off all the packaging dust. She went so far as to warn me that small children and even adults for our protection should not be around when we use this feature because the outside of the oven would become several hundred degrees as well as the odors from the burn off could be a hazard. She was very friendly and thorough as well in her explanation and seemed very happy to help me.

The front left burner puts off steam every time we use the oven and this is a ventilating feature to keep the oven the desired temperature. The heating element inside the oven is uniquely placed at the top of the oven instead of the traditional bottom where caked on burned grease and food drippings tend to stay stuck on for years! When I spilled a sugar cookie on the bottom of the oven it was a piece of cake to wipe clean and then burn off with the self clean feature! VERY SATISFIED and with Lowe's free delivery and haul away, I couldn't be happier! Frigidaire is owned by Electroluxe, so quite possibly a high end product at a very average price!

Pediatrician Visit: July 2005

I honestly can't remember the original reason for this particular Dr. visit, but the result of this appointment still shakes me to my core at each and every remembrance.

My son, Jacob, now two years six months was so hyper and out of control all the time that he had to be strapped into a double stroller so that he didn't run out of the building or run into the street. He was a big boy and I'm sure people wondered why I didn't make him walk. Jacob didn't know how to walk, he only knew how to run and he was quick!

I pushed the stroller into the patient room and we waited for the nurse to come and attempt taking his height and weight, this was always interesting to say the least with a child whom NEVER stopped moving...(giggling as would later refer to it!)

The Pediatrician we had chosen was an older gentleman whom epitomized the term gentle-man. He is the kindest and most warm man I have ever met and being a Physician is truly a call on his life, because he is amazing with children. I loved the way he spoke to me and I loved even more how he treated my children...like they were his grandchildren, his flesh and blood, he wanted to see them well and achieve great things in life. This is Dr. Thomas Page of Poway, CALIF.

Dr. Page spent some time reviewing my sons recent diagnosis from the San Diego Regional Center and spending even more time asking me questions and talking to Jacob. He handed him toys and watched him quickly lose interest and regain interest in some other toy (toy-hopping). Dr. Page spent nearly an hour asking questions and listening all the while interacting with my son before he turned to me and said, "Mrs. Smith, I don't know, I just don't know, but I'm NOT sure Jacob has Autism." One more open door, one more glimmer of hope, could we all be missing something huge? What is it, or Lord open our eyes and let us see, bless my child and heal his neuron synapses was my prayer every night when my son would finally slip into sleep.

MMR VACCINE

My daughter received her first vaccine of the MMR at three years of age and with her fourth birthday the school sent home a letter requesting the MMR booster be given by January 5th or she would not be allowed to return to school after Christmas Break.

Once again I began my google quest and found a MMR Titer could be done by a blood draw to ensure that her MMR antibodies are still high enough to negate needing a booster shot right now. So, off to the Pediatrician we went.

I am not against vaccines, but given our family history and my daughters chronic battle with infections, I think it's best not to vaccinate unnecessarily. Just recently a friend of mine was about six months pregnant when I had the opportunity to share my personal thoughts on vaccinating infants.

Children are born at all different sizes from approximately five pounds all the way to ten pounds and some ounces is the norm. Why do each of these babies receive the same dosage of a vaccine...wouldn't it make more sense that a baby born at five pounds would receive half the amount that a baby born at ten pounds would receive? I just don't understand how a precious infant body can be prepared to process such a dosage. Now, I'm not a doctor, right now I am a Home Manager, but my child rearing thus far has led me to question these things.

PECS:

So we were back to Early Intervention and in-home therapy. The therapist introduced PECS, which by the way is a VERY detailed and long teaching process that creates an avenue for non verbal people to tell anyone their needs and wants.

Jacob loved to eat. Chicken nuggets, pasta, hot dogs, apples, bananas really he would eat anything, he just loved food. The therapist decided that since food was so motivating it would be the best place to introduce Jacob to PECS. I'll never forget this, they had been working with Jacob for about a week with PECS at each mealtime, when I saw my first real sign that Jacob could and would speak.

He was eating Tyson Chicken Dinosaurs from Costco and instead of handing his therapist the PECS card for chicken he said "ch'in!". Oh my eyes filled with tears, wait, could he do it again....he did, "chi'in!" Oh the glee of a mother's heart. I knew from that moment on that PECS would not be used for communicating in our family! One victory, one step created one big measure of hope.

Gluten Free Casein Free: Can it make a difference?

I had become quite the Google Pro. I had researched Autism, PDD and the whole umbrella until my head hurt as much as my soul did from the reality of his diagnosis. One thing I kept coming across in my research was this resonance of parents saying that "gluten" was a major factor in contributing to our children's Autism. Specifically, saying that gluten and dairy were becoming an opiate to our children and keeping them "locked in." Could this be my window to pull Jacob out of, I wondered with hope

A few days later or case supervisor from CARES was again in our home. She took detailed notes during Jacob's therapy and then met with me after to review the progress. She told me that she wanted to introduce PECS or the Picture Exchange Communication System. I had been familiar with this technique when I was in college at Biola University I printed and laminated PECS for a few little girls from their home computer twice a week to help out their busy mother. I saw how it worked and in a way I was disappointed that this was being suggested because to me it was accepting defeat, that my little Jacob would never speak. This was a difficult day for me.

Before the supervisor left that sunny San Diego day I stopped her at the front door and asked her, "I've been reading a lot about this GFCF diet and it really making a HUGE difference in kids lives, what do you think?" Her response was like a punch in the stomach that I wasn't sure I could recover from.

She said, "Shauna, I've seen parents spend hundreds and thousands of dollars as they grasped at straws to "heal" their child. I've never seen the diet help, it's very expensive and there is just not a cure."

Oh my eyes must have revealed my heart because she said, "I'm sorry Shauna, but Early Intervention has shown progress time and time again." The door closed and my hopes shattered .

Gluten Free Living Magazine (Recipes)

Progress through Early Intervention

Jacob responded well to his home interventions. I must say however, that I cried outside his bedroom door for the first week or so listening to my child ignore and try to escape the confines of his room where he would be trapped with a therapist for two and a half hours each day. My heart broke wondering whether this therapy would aide my son in teaching him to speak and interact normally.

The therapist would give him very short commands like "touch head" or "touch tummy" if he did it correctly he was given a treat. Usually a fruit snack or piece of cereal, occasionally an M&M or the like. The treat was only used to reinforce correct behaviors and no treat was awarded for a wrong answer or behavior.

Listening through the walls to the therapists teaching my son pretend play still brings a smile to my face. Jacob knew how to imitate, but he never really made up his own play. I would hear the therapist, holding a dinosaur, shreak out, "ROAR, I'm going to eat you. Yum Yum Yum!" Jacob would giggle and laugh and loudly "groar" in response!

I quickly realized that I was capable of doing much of the "play therapy" and put a two way video camera in his room during therapy sessions. I would be in the kitchen or living room and I could watch every minute of therapy going on inside his room! This gave me the confidence I needed to get really involved in "intervening" on Jacob's behalf. We continued to pray for a miracle and waiting for any signs of progress.

Beginning Intervention: DTT, PRT and ABA

The San Diego Regional Center wasted no time in putting me in touch with the Center for Autism, Research, Evaluation and Service or CARES. Our program Supervisor became a frequent addition to our household. She or her two assistants were at our house everyday for a combined total of fifty-four hours each month for behavioral and educational intervention in the home environment. We focused on Discrete Trial Training, Pivotal Response Training, and Applied Behavior Analysis.

The first observation reads: Jacob's intake took place in his home. During this intake interview Jacob ran around the room waving a stick and making repetitive vocalizations while a video tape (THE WIGGLES) was on in the background. He approached his mother a few times in attempts to get her attention. Jacob's mother reported that Jacob is very affectionate and has only minor behavior problems. Mom reports that Jacob understood a few simple phrases, ("let's go" and "bye bye") and could say a few words (numbers, bye and all done). Jacob is thirty months old.

I remember this day clearly, I was still in shock from the diagnosis, I wanted time to stop so I could process and deal with my potential reality. I remember asking what his prognosis was and being devastated by the answer. Their answer, we can't tell you that, each child progresses differently, some never speak, never hold a job, never have relationships, people can come and go with no response from the child. We prayed every night that our child would speak. If he could just talk, I would be content. I cried a lot, the unknown creates such a defeating feelings with unrest within ones soul.

Gluten Free & Casein Free (GFCF Diet)

We have been casein free since January 2006. We have been GFCF since June 2007. Our story begins in San Diego California with the birth of our first child, a son. Our son Jacob was diagnosed with PDD-NOS/Autism on May 31, 2005. He was two years, four months and nineteen days. This diagnosis came from Dr. Kiki Roe, Professor Emeritus and Clinical Psychologist at UCLA School of Medicine. His testing was all done at the San Diego Regional Center. Jacob's tests revealed that his communication level was at or equivalent to a twelve month old. Daily Living Skills were at or equiv to a twenty-one month old. His socialization was at a sixteen month level and his motor skills were the highest at approx. twenty-eight months. Remember, at this point Jacob is actually twenty eight months nineteen days. This began our quest to heal our son locked in a world only he could understand.