THE JOURNEY: PART III

     With the help of Boonie's wonderful speech therapist, I was starting to gain tools that I could use to help my son develop his speech sounds, the most helpful probably being the technique of using play, using things he was interested in, to help facilitate his communication.
     The summer months came and with them, occupational therapy.  It sounds very clinical, but in reality, occupational therapy was a wondrous place, much like a glorified play ground with a ball pit, zip swing, tire swing slides and all sorts of exercise balls, cushions, etc. that the therpist--Gina--would use in play with Boonie.  Remember the old games of rolling someone up in a blanket burrito or making obstacle courses out of cones and the mini trampoline and hula hoops?  All of these activities provide certain kinds of valuable sensory input that help regulate and calm bodies.  It's the deep muscle sense of touch and Boonie, like many kids on the autism spectrum and many kids not on the spectrum, need that deep touch (or proprioceptive input) to help regulate their bodies.  Boonie, they found, was under sensitive to touch, so he often sought out this kind of sensory input by shaking his head a lot, banging cabinet doors, jumping, flapping his arms when he got excited and looking for big hugs.  Interestingly, after a couple weeks of O.T., his words began to come and since part of his speech problem was a motor planning issue, the O.T. helped teach his body and his tongue how to do the gross motor function involved in making sounds and stringing them together (gross motor planning).
     It was in O.T. when our therapist Gina told me about this special diet call gluten and casein free that some parents were trying and had found some success with in helping alleviate some of the behavioral symptoms categorized as "autistic behaviors."  She told me that gluten was the protein in wheat, barley and oats among other grains and casein was the protein in milk.  That's all I remember her saying at that time, but she procured a book for me from the group's nutritionist with gluten and casein free recipes and a list of things that contained gluten.
     Our therapies progressed.  Boonie started a wonderful behavioral therapy called Floor Time.  Our therapist was a wonderful young lady studying for her PsyD in Psychology.  We were lucky to have her for four years.  She came to our home 8 hours a week in the beginning.  She would meet Boonie at what social level he was at that day (one of six social levels) and through activities he was drawn to, she would join him and begin to build on his play making it more meaningful, eliciting communication, holding him accountable to the rules, validating his interests and ideas and then building on them.  It was a very joyful experience--every time.  
     We also were able to place Boonie in a very good social skills group nearby.  Boonie had begun to complain of stomach aches after almost every time we ate a meal.  He would want to go lay down on my bed.  His stool was loose not hardly ever firm.  I didn't put all of this together until two events happened: 1) a conversation with another mom at the social skills group waiting room and 2) an autism conference I attended.

     While in the waiting area, I struck up a conversation with another mother.  She said her son had a mild autism diagnosis with an apraxia speech issue.  This was very similar to Boonie.  She said that with the help of a gluten-casien free diet, vitamin supplements and seeing a speech therapist who specialized in apraxia, her son was now at a point in his development where the doctor would no longer give a diagnosis of autism.  The gluten-casien free diet had been nagging my motherly conscience.  We had many allergies on both sides of the family.  Maybe Boonie couldn't handle these foods.  The thought, though, of cutting out bread and cheese from his diet had seemed like it would be very hard.  He was already picky with what he ate.  But the mother said, that after two weeks if he has some tantrums or it seems like he's regressing, then the diet is working.  She said it is like going through withdrawls and then they improve.
     I went shopping directly afterward and made a dinner of boiled chicken breast and rice and peas.  I found gluten free / casein free cereal, soy yogurt and G C free waffles.  I tracked what I fed him and any behavioral changes I saw.  I noticed improvements right away.  First, the spacey fog cleared up.  He seemed much more present and alert and attentive.  He responded to his name right away as opposed to me having to call his name several times to the point of having to get face to face with him before he would respond.  After a week, he started stringing words together.    I experimented with different baking and pancake mixes.  Going on a special diet means you begin to read labels and wow I began to notice somethings!  For instance, high fructose corn syrup was added to a myriad of things--yogurts, breads,  juices, etc.  This didn't seem like a natural ingredient to yogurt, etc. so I  tried to cut it out of  our diet.  I determined to get our food back as close to the farm as possible meaning, no chemicals or added things that wouldn't be in their if we lived on the farm, ie. artificial preservatives, dough conditioners, coloring added, etc.  I began making a lot of things from scratch: gluten-free chicken tenders, g / c free muffins, waffles, pancakes, cookies.  I didn't want Boonie to miss out on great food just because of the diet.  So I experimented with gluten-free flours and almond milk instead of cow's milk.  I found that Boonie really liked tacquitos and so I found out how to soften than corn tortilla in the oil to then be able to roll the chicken up in it and make some chicken tacquitos.  Our family began to develop a taste for more depth of flavor in our baked goods.
     Then I heard about this Autism conference that would be featuring Temple Grandin's mother as the key note speaker and I wanted to hear what she had to say.  I went to the conference and loved hearing her speak.  I had a little time, so I stuck around for the next part.  Two doctors--one of which was Jaquelyn McCandless--spoke.  They delivered some riveting information that began to resonate with my observations of Boonie.  What I understood from their presentation was this: that babies were being exposed to high levels of heavy metal compounds like Mercury in vaccines (ethylmercury preservative used prior to 2006) and other places and that due to genetic factors and other factors could make children  susceptible to developmental problems that were being labeled as autism.  They talked about leaky gut syndrome and my ears really perked up.  They said that one problem caused by this exposure was a messing up of the gut lining.  These children were not able to breaked down the gluten and casein proteins and sometimes soy and corn as well.  That the gluten and casein protein s would be broken down to the peptides and then the peptides would circulate in the blood stream acting like an opiate and that was the "spaciness" we would see in children with the autism diagnosis.  Children with this problem would crave gluten and casein like a drug and have withdrawls after going off.  They talked about leaky stools as a result of messed up gut lining and malabsorption of vitamins and minerals necessary for development.  They talked about deficiencies in calcium and the omegas and what symptoms deficiencies in these and other vitamins could cause in children's development.

     I went and bought Dr. McCandless's book: Children with Starving Brains.  There is a section in it that lists the vitamins and minerals and what symptoms of deficiencies in each are.  I looked for Boonies symptoms and started using those supplements in smoothies for Boonie.  Namely Cod Liver Oil.   I also stared through in Epsom Salts to the bath so he could absorb the Magnesium Sulfate to bind with Mercury in his body so he could flush it naturally.  Then I took notes of what changes I observed and what he ate every day and what vitamins he had everyday.  I cut out apple and grape products (as those can cause candida yeast growth in the gut and further inhibit proper nutrient absorption through the gut lining) and started using pear products instead and frozen berries like blue berries for snacks.  In short, I wanted to help heal his gut.  I began to notice increased eye contact, more fluent speech, more social appropriate interactions, more responding to others and less of the flapping, banging and jumping.  Eating foods that were pure of chemicals, more diverse grains and vitamins was a non-invasive way to help my son give his body what it might be needing.  Keeping notes of his behavior helped me to track what was working.  It wasn't so bad for the rest of the family's health either...

To be cont'd...
  

The Journey: Part II

So I had quit my job and told my husband that we would have to make it work financially, because I needed to be at home to help our oldest son, who had just received a diagnosis of mild autism. I tackled one symptom at a time.  My first goal: helping him learn how to talk.

Boonie was just 2 1/2 years old when we went to our first appointment with the speech therapist.  At first he was frightened and clung to legs, crying.  I felt a little embarrassed every where we encountered people--the supermarket or the park--because he did not stop to look, speak or respond to anyone who might say hi to him. I would smiled and say something like: "You know boys."  The truth is, I didn't know why he seemed to be zoned out, uninterested.

But as I checked in with the office secretary, one of the therapists slowly crawled on the floor up to him pushing a small truck.  Then she stopped a foot short of him and pushed the truck gently towards him.  Then she backed away quickly playing shy.  A game somehow materialized out of this wanting to share the truck but playing shy with him and he relaxed, tuned into her and the car. I felt a sense of relief, like I could take a rest from an inexplicable burden I had been carrying and let these wonderful people lighten the load and teach me how to better carry it. I felt like I had come to a designated check-in point appointed for my journey as a mother to Boonie.  We were in the right place.

I didn't know what to expect in a speech session, but it turned out to be a magical place.  I remember at one of Boonie's first sessions, the therapist had a large bead and wire toy.  You know those toys that look like someone took an abacus and curled and twisted all of the wires so that a child can push the beads up and down along the curls of the wire.  So she would push six of those bead up the wire, saying: "Up, up, up, up, up, up, up," until the beads reached the top and then she would wait.  Let silence surround us on the floor, building suspense.  Then: "Down!" she'd say and let all the beads go crashing down.  She did this a few times sitting on the floor with Boonie and really dramatizing the ups and downs until he would wait in great anticipation for those beads to crash.  After several repeats of this she changed it slightly and here's where the magic happened.  She up, up, upped the beads and waited...and silence.  Then in the silence, a little utterance popped out of my little boy's lips  "Dow-!" and she released the beads and to his delight, they all came crashing down.  He laughed and laughed and then she asked: "More?" while simultaneously signing "more" and he signed more and she did it again.   This was the first time he had tried to say "down."  The first time.  He had two other word-sounds at that time: Ba (ball) and Ma (mom).  These therapists were miracle workers for us. 

We went to speech twice a week.  The therapist engaging Boonie the entire session and through play, eliciting intelligible noises.  Words.  Response.  And then I would drive him home and do everything I saw the therapist doing with him on our floor at home.  Having this direction to go in with Boonie and the new tools thrilled me and showed me what I needed to do.  Knowing what he needed me to do to help facilitate his development gave me hope and I began to feel comfortable in my new identity as a mother..

Part of not being able to talk, however, means tantrums.   He had no other means of expressing "NO!" that two-year-olds are infamous for and also, children with sensory processing problems, you can't always tell what the tantrum trigger is.  It wasn't long, before the therapist took us into a different room for our session one day--a small and plain room.  A boring room.  A little-bit-dinge room. He began to scream and pound the wall.  I did not know what to do with him under the circumstances.  The therapist told me that we were not going to let him get away with that and then she taught me a tool I will never forget and that I have used with all of my children.  She said: "Hug him snugly from behind and face a blank wall.  Count to ten, or if you need to, to fifteen or twenty.  Then ask him, 'Are you ready to try again.'  Looking at that wall is going to be boring and he will not want to keep looking at it.  Holding him in an embrace gives him some sensory input (firm touch) that will make him feel safe.  But you have to be consistent.  Even if you are at the supermarket, you cannot be embarrassed, you have to take him out of the cart and find a blank wall and count.  If he cries after you've counted, start counting again until he's ready."

I took her advise.  It was the only sound advice I had received on tantrums and you know what, it worked.  It took only two or three times in the store in conjunction with using the wall technique consistently at home, until he figured out that tantruming was going to lead him to a blank, boring wall.  I realized when small children, or any of us for that matter, are unable to cope with the circumstances and resort to a tantrum of some kind, giving them a firm, consistent safe boundary calms them and helps them learn how to cope with uncomfortable moments in life in a rational way.  You have trained them that tantruming is not an option. 

To be cont'd...

The Journey

The Good Food Fairy wasn't always the "Good" Food fairy.  Becoming a mother--learning how to nurture children--was a learning process.  I thought, "When the baby comes out and is in my arms, then I will know what to do."  Well, he came out and I loved him, but I had no idea what to do!  It was a process, becoming acquainted with my new baby, learning what he needed and how he needed it.  Learning how to make him comfortable and feel loved and safe.  It never dawned on me that different bodies, like different cars, may require different foods or fuel for optimal functioning. 

Each child has taught me something different and it was my oldest son, almost 11 years-old now, my "Hummingbird" that taught me how to be a mother.  He taught me about child development milestones and gross motor skills, he taught me about patience and built up my physical endurance and he taught me about food.

He was a very good baby, EXTREMELY active, desired to be outdoors, would light up with people and was very smart.  I had nicknamed him Boonie.  Around 8 months old, when we were living in Italy, Boonie started shaking his head back and forth in a funny, repeated way.  Six months later, he started putting his ear directly on the speaker of musical toys and wasn't talking.  By 24 months, my Boonie was not talking still and was playing with toys in a repetitive, odd fashion.  He also liked turning the lights on and off.  I talked to two doctors about it and brought up autism, but they both said that boys talk late and that he was too social of a baby for autism.

That was October and in December, my husband and I were volunteering in the nursery one Sunday and I saw that my little guy wasn't doing what the other kids were doing.  He was wandering around the table at snack time taking raisins and goldfish off the other children's napkins instead of sitting down to their little table and he didn't sit and listen to the nursery leader when she gathered the children for songs and stories.  The next day I talked to my son's babysitter and asked her if she had observed differences between him and the other children.  She told me yes.  "He doesn't go outside anymore," she said, "and he used to play outside all the time."  She also described how he had become focused on certain sound making toys or spinner toys and would play with them over and over and over. "What should I do?"  I asked  I am grateful to this day that she said what she said: "Have a consultation with you pediatrician.  There might not be anything to worry about, but you would hate for there to be something wrong and to have not addressed it and gotten him the help he needs."

By now, my husband was at USC law school and I was working at the School of Medicine there.  We had a new pediatrician at one of USC's facilities and she told us, "There may be something wrong, there may not, but lets start with a speech and language assessment and go from there."  So I did.  I took him to our appointment at Children's Hospital.  The lady speech pathologist played with him, talked with him and finally sat down to conference with me.  She said, "He does have a speech delay, but I also have observed some autistic-like behaviors and I am referring you to the Lanterman Regional Center for further assessment.

At this point, I knew my sweet boy was not developmentally on track, but knew that he had been fully present and connected with me, but a wall--a barrier--had subtly materialized between us, and  I wanted tools to help me help him get out from behind that barrier.  I didn't know if this constituted autism, but knowledge is power and I was learning. 

California has a Regional Center program for those with special needs.  Once you are diagnosed with special needs or disabilities you are in the Regional Center system and you are in for life.  They coordinate and provide all your services by vendoring with various providers until the child  reaches the age of 3 at which time the school district takes over payment for those services that pertain to the child's education (speech therapy, occupational therapy, sensory integration, etc.).  The regional center continues to provide social therapies if still appropriate for that child.  My husband and I took my boy to the our assessment at the regional
center.  The lovely young psychologist had such a positive and pleasant air about her and immediately put me at ease.  Like the speech and language assessment, she played with Boonie using various toys, observed him playing, talked with him, gave him chalk and asked him to write a line on a small chalk board, etc. Then she sat down with us.  "I am giving him a diagnosis of mild autism," she said.  "I am making this diagnosis because he has behaviors that fall under the criteria for Autism:."  She explained what they were:  Communication impairment, sensory difficulties, and repetitive play primarily.  Like each professional before her that we had seen, she was very encouraging and optimistic.  She said, "I am giving him this diagnosis so that he can get services now, but things could change in one year, three years, five years.  When they reassess him at 6 years-old, they may say that he doesn't need an autism diagnosis anymore."  That gave me great hope.

That night I was on the phone with my mom.  She is an elementary school teacher in a low socioeconomic neighborhood.  She has seen it all: children who were drug babies, children with issues not assessed or children not advocated for.  She told me, "Just use the label for what you need it for, but treat Boonie like Boonie.  Do not treat him like a label.  I didn't raise you kids to be one thing or the other.  And he is just not that far off of a typical child."

So I quit my job and told my husband that we would have to make it work financially, because I needed to be at home to help our child.

To be cont'd...