Stories From the Heart: Can Food Sabotage Your Child’s Progress?

In the mid-1980s, I conducted a study on food sensitivities and their effects on ADD/ADHD symptoms. After testing the patient for delayed food sensitivities, the study consisted of two phases:

The Avoidance Phase, in which the offending foods are avoided for six weeks.

The Challenge Phase, in which the excluded foods are slowly added back into the diet. The reason for the challenge phase is to prove that the foods identified by the test are actually causing specific symptoms.

Included in this particular study, was an autistic child around 2 years old.  During the avoidance phase when the harmful foods were removed from this child’s diet, ALL of the Autistic symptoms disappeared.  With such dramatic results, the parents withdrew the child from the study before the challenge phase. They not only feared that challenging the foods back into the child’s diet would cause the symptoms to return, but that they would not be able to reverse them again.

This was the first Autistic child I had ever encountered.  I consulted my dad who had been a General Practitioner for 50 years, and he had never seen a single case.

As an Otolaryngologist, I didn’t see many cases of Autism.  However, just before I moved from Pittsburgh to Florida, I saw the son of a nurse at the hospital who had just been diagnosed with Autism. After I tested him for delayed food sensitivities, I instructed his mother to have him avoid the harmful foods.  16 years later he and his mother stopped by my office.   He had continued the protocol and was preparing for college.  As far as I could tell he was normal. The only unusual remnant of his autism was that he couldn’t lie.

In Florida, I started seeing more and more patients on the Autistic Spectrum.  I have been watching results in my own practice and getting feedback from DAN doctors and others who regularly treat Autism.  What I have found is that, in delayed food sensitivity, immune complex plays a vital role in the progression of Autism.  And the younger the child we treat, the better the results.

Certainly there are genetic predispositions that affect the population, but since it was rare before the 1980s, there is obviously something else which is drastically contributing to if not causing the huge increase in cases.

Allergic load and an over-stimulated immune system seem to me to be major culprits.  Allergic load is the amount of allergens the body can successfully tolerate.  When we’re exposed to more than we can handle, the immune system reacts badly.  In the case of autism, the brain is affected during its development.

By decreasing the allergic load, the immune system is better able to handle any other onslaughts it may encounter.  Since food is such a large portion of the potential allergic load, it makes sense to test children early for both immediate and delayed food sensitivities and eliminate the foods to which they react. This increases the chance that the brain can develop normally.

By Daniel Dantini, MD

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

 

Stories From the Heart: Educating and Empowering Myself and Others

My three year old son, Tafari, has come a long way since he was diagnosed with Autism in early 2009. Though I do give myself credit for his development and progress, I give even more credit to the similar families in the Autism community who have helped us along the way. I believe that many parents dealing with Autism become so riddled by isolation, which they forget to realize that there are many other families in our situation who are dealing with similar issues and our willing to hear our voices and concerns.

I am always at my computer, and I am always looking for different resources to further my education and help my son. About a year ago, I stumbled upon an online community that had just launched and was starting to build a name in the Autism community. I was intrigued, because it was a social network a bit like Facebook, but it was only for parents and families that have children with Autism. I quickly got involved in the website,  and today I have strong relationships with thousands of mothers, fathers, and specialists in the Autism community.

I run several groups at Theautspot.com, including Single Parents and Low Income Families on the Spectrum, and I feel blessed to share my experience with those who can relate to what I am going through. I also get a ton of support from the resources section of the site as well. It allows me to search for all kinds of Autism resources (therapists, schools, advocacy, summer camps, etc.) within my city and any other cities in the United States.

Through theautspot.com, I was even able to find a special needs lawyer that has helped my son get the rights he deserves in IEP meetings. I had been looking for something like www.theautspot.com for a while and I really wanted to share it with everybody. I really believe that we can all come together and make theautspot.com the global Autism online support system.

I was one of the first few members to sign up to Theautspot.com last fall, and since then I have developed a friendship with the site creators, Dele Popoola and Greg Koltsov. Dele has a 19 year old cousin on the Autism spectrum, and he knows very well how difficult it can be to raise a child on the Autism spectrum, especially a single parent like myself. Both Dele and Greg knew that Tafari could benefit from speech therapy, and knew that I wasn’t doing very well financially.

They were generous enough to put together a gala fundraiser and were able to rise over $3,000 dollars to help fund Tafaris speech therapy! I feel so blessed and so fortunate for the work that they have done for me and the Autism community, and I encourage all others in the Autism community to find a home at theautspot.com like I did.

By Jane Tipton

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

 

 

Stories From the Heart: Transitioning Planning

Have You Considered Health Issues?

In the “ideal world” transition planning should be a part of every Individualized Educational Program in every grade level. Parents with students that have special health needs are constantly trying the balance their child’s health needs and educational needs.  In the Individualized Educational Program there is a time that transition planning begins, and this adds another process for the parents to understand.  Unfortunately, many times the health issues are not addressed as much as they could be to help plan for transition from the traditional school setting to community based activities.

The IDEA regulation makes it clear that the student is the most important member of the team.  Many times the student with special needs have not been as involved in their own health care needs due to the parents doing for their child, the school nurse providing the service, or the student not wanting to do their own care for various reasons including not being able to physically perform.   Transition occurs many times for a student that has special health needs, but under the IDEA regulation transition planning occurs officially during the Individualized Educational Program at the age of 14.

Transition planning is designed to help the parent and student connect with the adult service system.  This plan should be comprehensive so that it allows movement from school to post secondary activities.  It is a time for all members of the team to consider skills and accommodations needed for the student to participate in the five areas of transition: job and job training, community participation, recreation and leisure, home living, and post secondary education/training.

A member of the educational team that is usually not utilized to their fullest potential is the school nurse.  The school nurse can assess health issues that need to be addressed during the transition planning.   The school nurse can meet with the parents and student to discuss the student’s understanding of their disability/chronic illness. They can discuss with the family how the student would manage their disability, including making appointments, arranging transportation to the doctors, ordering medical supplies, and keeping a record of these supplies.  The nurse can help the parents understand their insurance coverage and help them identify adult providers for their student’s disability.

The school nurse can help assess if the student would be responsible for taking their meds, and ordering their medication, understanding of risky behaviours including unprotected sex, drinking, smoking and illegal drugs, and the nurse can also assess the student’s understanding of healthy hygiene, nutrition, exercise and preventive health and dental care.

During this time of transition planning, goals can be written to help the student be as independent as possible to care for or self direct their care on a daily basis.  Helping your child gain their independence and self advocate for themselves is essential for all students that have special health needs so they can transition smoothly into adulthood.

Submitted by: Barbara Obst, RN, MS.  Kennedy Krieger Institute, Co – Coordinator of the Specialized Health Needs Interagency Collaboration Program (A grant with the Maryland State Department of Education, and Kennedy Krieger Institute).

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: It Sounds Like Corn

From the time my son was born, I looked forward to the time when he was old enough to go hunting and fishing with me.  As a father and an outdoorsman, having a son meant that I would have someone to share those experiences with. In my family, I was the youngest of five boys. My oldest brother was eighteen years older than me and my father was eleven years older than my mother, who was thirty-seven when I was born.

Like a lot of families, my father and mother both worked full time and carried second jobs. Needless to say, my father and I didn’t get to spend as much time together as I would have liked, and when I was seventeen my father unexpectedly died of a heart attack. Fortunately, I was blessed with the best brothers ever; we spent a lot of quality time together even before dad passed away. After dad’s death, my brothers tried to fill the father role for me and honestly, I don’t know what I would have done without them. They all played a vital part in my life.

As I started my own family I had visions of what my relationship would be like with my children. I thought about fishing trips, camping, vacations and all of the normal things that families do. You can imagine my delight when my first child was born and it was a big nine pound baby boy.

The first couple of years were typical baby years except he was what my mother called “colicky”. I just wanted him to hurry up and get old enough to hold a fishing pole. Our second child came along when our son was about two and a half. This child was a beautiful little girl. I thought this would be great, I will have a son to do boy things with and my wife would have a daughter to do girlie things with, what a perfect family.

Almost as soon as we brought our daughter home our son began showing signs of strange behavior. He wouldn’t even look at his new sister. Over the next few months my wife became increasingly concerned with his actions and began looking for an answer. Within a year or so, we had found a place to have him “tested,” and they gave him a label of Pervasive Developmental Disorder. Thankfully, my wife continued searching for information and instructions on how to live with what we now know as Autism.

Even though my son was different than I expected, I treated him normally and took him with me as often as I could. We made many trips to our local lakes to spend time fishing, and I use that term loosely. I would try to fish while he would look for the biggest rock he could pick up to throw in the water. I didn’t catch many fish, but he had a great time “fishing.”

One particular trip on a summer evening, I had given up on catching any fish and most of the good sized rocks that were high and dry when we arrived, were now resting at the bottom of the lake. The setting sun was transforming the western sky in hues of orange, red and yellow. I took a minute to enjoy the beauty that God had created, something that I wanted so desperately to share with my son. I said to him, “Isn’t that sunset beautiful,” to which he replied, “Yeah, it sounds like corn.”

Disheartened, I hung my head, turned and walked to the truck. Like many times before and since, I just wanted a normal response. I threw my gear in the back of the truck and climbed into the cab wondering if I would ever be able to reach him. As I started to back away I took one more look at the lake. Stretching across the calm water lay a long yellow reflection of the sun, looking incredibly like an ear of corn. With a lump in my throat, through watery eyes, I said, “It does sound like corn, doesn’t it.” Since then he has taught me many more lessons on perception.

By James Clark

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

Stories From the Heart: Little Billy

It is September and I receive a phone call from the school board offering me a position to assist with the integration of a five year old boy into the kindergarten classroom.  He is part of the Autistic Spectrum, as he was diagnosed autistic at the young age of 2, and is currently experiencing an emotional and physiological meltdown with this transition.  I willingly accept the post and am off to the school.

After meeting with the principal and resource team to become aware of the behavior challenges that were being experienced I was directed to his classroom where I was to enter and observe this little child that I will call Billy.  Of course as I entered the classroom all the children seated at their work stations looked in my direction to see this new person entering, that is all, but one tiny blond boy who seemed to be totally fixated on blocks on the table in front of him.

The teacher then announced to the children that time was up and directed the children to be advancing to the next work station.   Billy sat quietly as if the teacher had not made any announcement and showed no interest or desire to be participating in any transition.  At one point he lowered his head and placed his tiny hands on his ears, a clear indication that the surrounding movements of chairs and classroom activity during this time had become overwhelming.

One of Billy’s classmates touched him and indicated that he had to move to the other table.  It was very clear to see that Billy did not like to be touched as his body tensed up. Then as five year old`s do, before anyone could intervene the other child again, loudly instructed Billy to move to the other table with a slight push.   Well it didn’t take long to witness the incredible behavior change of this angelic looking child.  It was an outburst of emotion with some screams, cries and hands swinging the blocks in all directions from the table.

As I approached (still a complete stranger to him) he lashed out to hit the other child.  I was instructed to remove him from the class in fear that other children would become frightened or hurt.  Because he was tiny it was not so challenging for me to lift from behind, his hands crossed in front of him and remove him to a quiet nice private little setting not far from the classroom.

I sat Billy down on the nice comfy chair in the quiet room. He was very tense, throwing his head back (which is why he was in a comfortable cushioned seat).  I started to softly hum a song and gently message his fingers one at a time slowly, it didn’t take long for me to feel the tightness fade. I gazed upon this beautiful child’s face and I thought about how sensitive I am to chewing sounds and tried to imagine what it would be like to live in his world, a world where most sounds, touches, tastes, smells not only sparked a great sensitivity but festered an anger due to being incapable of voicing his feelings and having people truly understand them.  Of how the slightest transition, difference in a daily routine, seeing a new face can cause so much distress.

Yes, and here he was, five years old not just walking into a new big building, surrounded by so many never seen before big people, many excited running, laughing, screaming children and moms and dads leaving.  There was just too much stimulation for this young mind, this beautiful child to deal with.

I was very fortunate to be part of a truly dedicated and caring team.  We found out all of his likes and yes, there were many challenging days, which eventually got fewer and fewer.  Billy in no time, would walk down the halls and say hi to people.  He would participate in so many activities all in his ways, but he fully co-operated and became a positive ray of sunshine.  He went from not talking to non stop talking.

Together as a team,  with any new event, we would ensure that he was made aware in advance and well prepared him for them…. he taught us all so much about life, challenges, and to stop for a moment and enjoy the peace of our own world too.

I believe that these very gifted children, just need us all to watch them, get to know them and their world, understand, love them, make them feel secure and then the sky is the limit to their success.
It was and still is my pleasure that these children allow me to be a part of their very special lives.

By Mary M. Rowan

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism and special needs experience.

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