What the MRI Scan Revealed

My son became sick yesterday after playing at the park with friends.  While generally a very healthy child, Reagan gets easily dehydrated and as a result vomits, his body temperature rises, and suffers pain that emanates  from the brain: headaches or in this case earache.  For years we had no idea why this happens to him.

When our son, Reagan, was 4 and a half years old, my husband finally took him to get a Brain MRI scan. Various studies have shown that children under the age of three that have gone under general anesthesia are at higher risk for developmental delays. Taking into consideration my son's existing delays, complicating it further was not something we were willing to gamble. The most serious of complications, death, haunted us through the entire experience. The fact is, you never know how a person will respond to it for the first time. And the second time is just as scary as the first.

Although we had at least two previous prescriptions for this procedure, we were worried about putting our son under general anesthesia at such a young age.

The MRI Scan revealed that Reagan had multiple pineal cysts which altogether amassed 1 cm large in size.  These cysts are fluid-filled sacks located on the Pineal Gland (often referred to as 'the third eye') in the very center of the brain at the end of the brain stem and next to the pituitary gland. On the MRI scan photograph to the right, the cyst looks like a porous ball. The Pineal Gland itself is not very well researched, although it is one of three glands that comprise the Endocrine System in the brain. Its function is often referred to as insignificant. What they know about its function is that it is responsible for producing melatonin, something children produce an abundance of naturally that enables them to sleep more than adults do. As you grow older, the Pineal Gland produces less melatonin. The only form of treatment available for a growing, symptomatic Pineal Cyst or Tumor is surgical resection. But because of its location, it is the most difficult surgery to perform. In most cases pineal cysts are benign. Neurosurgeons will only remove the cyst if it's symptomatic and growing. Most 'neuro' doctors refer to this cyst as an 'incidental finding.' They will likely tell their patients that 'it is not causing their migraines,' or my favorite, 'It is not causing the autism,' and that they have nothing to worry about. But a symptomatic Pineal Cyst is something that warrants monitoring, concern, and credit for causing a myriad of problems - it is not something to disregard or take lightly.  This blogger writes about his Pineal Cyst and his wishes to have it removed, and provides great visuals that show exactly where the cyst lies in the brain.    

So what symptoms can this so-called 'incidental finding' cause? I did a lot of online research to find out its symptoms and worse, its potential complications.  Any Pineal Cyst larger than 7 mm can cause symptoms. Symptoms include: migraines that will not go away with medication; drastic vision loss; eye paralyses of upward movement; regularly dilated pupils; irregular sleep patterns; ringing in the ears; precocious (or early) puberty; it can interfere with the flow of the erebrospinal fluid (CSF); it interferes with the inability to regulate one's own body temperature when pressing up against the hypothalamus gland, described by patients like bee stings on their skin or hot-flashes; and worse, it can lead to a life threatening condition: hydrocephalus. The inability to regulate one's one body temperature and interrupted circadian rhythm. That's it!  That what's wrong with my son, both my husband and I concluded.

Since birth, Reagan was not able to regulate his temperature, which is why as an infant he who would sweat through his clothes and drench his crib sheets. He would not tolerate blankets and long sleeve PJ's. And boy was he thirsty, all the time.  They say babies should not drink water, but Reagan couldn't do without it.  Without being fully hydrated, he would get sick, e.g. vomiting, constipation or diarrhea, and body fevers that would last a week, and sometimes longer.  And multiple doctors never knew what was wrong.  This was especially apparent when he started the early intervention educational program and the staff would not properly hydrate him, which prompted us to include the directive in the Family Support Plan.  This was one direct symptom of the Pineal Cyst that we were able to confirm, mainly because he cannot communicate his feelings. We know he sometimes has headaches, despite the fact that he cannot verbally say this to us.  When they occur, he lays in the dark and goes to sleep for hours during the day, something he would never do otherwise.  And his body temperature always rises, so we know it is attributed to him not being properly hydrated.  It wasn't a coincidence that during Pre-K this would always happen when the teacher was absent from school. 

So my research led me to a brain surgeon, Dr. Shahinian, in California and his practice, The Skull Base Institute.  He pioneered the minimally invasive procedure to surgically remove this and other cysts and tumors located in this region of the brain by simply entering through a dime-size hole in the back of the skull with a cyber knife. He explains this procedure in an episode of The Doctors, featuring Christa's Brain Surgery, a teenage girl's experience with her Pineal Cyst, before and after the surgery that gave her back her life. The symptoms become so severe that they had overwhelmed her life.  She could no longer see. The migraines never dissipated. She had to stop going to school - could not leave the darkness of her room. She had gone to multiple doctors that all said the same thing, "her symptoms were not caused by the cyst."  Her post-surgery results proved otherwise.  Like Christa's story, there are others. Here are links to Dylan and Ashley's stories.

So I know that my son's Pineal Cyst is not causing his autism, as the doctors like to say. And because of the autism, they can't confirm that my son's loss of speech was a result of the cyst. But we know our children best.  Parents are our children's best advocates. And with information so vastly available on the internet, parents are often more motivated than medical doctors to research and find the causes of symptoms in our kids.  What I do know is that my son's cyst is large for a 4 year old brain, and because of his confirmed symptoms since birth, I know he was born with this cyst. Reading of other people's experiences with their cyst has confirmed for me the relationship between this cyst and difficulty with speech.  I read about a woman who could no longer speak out the ending syllables of many words because of this cyst. In analyzing the manner in which my son lost his speech, incrementally dropping the ending sounds of words he once consistently spoke so well over a duration of two years to now only sounding out the first letter, leads me to instinctively believe that this cyst may be a contributing factor.


I was surprised to learn through posts on autism groups/forums about the many children with autism who naturally have dilated pupils or how so many have sleep difficulties regularly treated with melatonin supplements, and have wondered whether any of these children may have a symptomatic Pineal Cyst previously disregarded as an 'incidental finding.'   

Pesticide Exposure and Early Childhood Cognitive Development

This is the visual that has forever changed the way I view pesticides. The two images to the left  represent drawings made by four and half year old children with low blood levels of pesticides, whose mothers also had low levels during pregnancy. The two images on the right represent those drawn by four and half year old children with high blood levels of pesticides, whose mothers also had high levels during pregnancy. This test, in which the children were asked to draw a person, was one of the many tests administered during a long-term study conducted by the Columbia Center for Children's Environmental Health. The study followed pregnant women and their children through age seven with and without exposure to the insecticide chlorpyrifos, now banned by the U.S. E.P.A. from residential use/products. However, we're still exposed to this chemical in our environment through its continued commercial and agricultural applications. It's in the foods that we eat!

This study, as well as other similar studies conducted by this center, showed direct correlations between prenatal exposure to the pesticide chlorpyrifos and delayed cognitive development in children. One study, showed a correlation between exposure and deficits in working memory and IQ at age seven.  Like autism, this study showed boys to be more vulnerable than girls to the detrimental effects of chlorpyrifos.

Upon seeing this image on my television screen featured in an educational video that my husband recorded for me, The Habitable Planet, I immediately began to research what types of pesticides are found in our foods. I came across the Pesticide Action Network's What's on My Food? website. I wanted to know what foods might contain chlorpyrifos. What I learned was astounding. Chlorpyrifos have been found in over 40 different fruits and vegetables, with the highest levels found in a single serving of my autistic son's favorite fruit: apples. And it doesn't end there. Apples contain over 42 different pesticide residues and are ranked #1 in the Environmental Working Group's Dirty Dozen Plus: their list of fruits and vegetables with the highest pesticide residues. My son eats over four apples each day and I had never purchased organic fruits and vegetables, until now. How had I not known of this sooner? Why do obstetricians not recommend to their pregnant patients to eat organic fruits and vegetables during pregnancy? Why isn't there more awareness on the subject?  These were just some the questions swirling around in my brain upon this discovery.

I believe pesticides are among the many environmental factors contributing to our autism epidemic, but this is one factor that we can at least control during pregnancy and in our children's critical early developmental years. The Pesticide Action Network reports that pesticide exposure contributes to a higher incidence of Birth defects; Neurodevelopmental delays and cognitive impairment; Childhood brain cancers; Autism Spectrum Disorders (ASD); Attention-Deficit/Hyperactivity Disorder (AD/HD); Endocrine disruption; and Cancer. Pharmaceuticals, vaccines, pollution, pesticides, etc. are all invading the natural environment and our bodies. It's not a coincidence that autism occurs most prevalently among children of older parents who have been exposed to these environmental toxins longer.

I urge all pregnant women and parents of young children to download the Environmental Working Group's 2013 Shopper's Guide to Pesticides in Produce and make the financial investment of buying 'organic' at the minimum those fruits and vegetables listed on their Dirty Dozen Plus list.  Your child's health and cognitive development is well worth the investment.  

     

School Placements: Which one is right for my child?

Under the federal law Individuals with Disabilities Education Act (IDEA), States and public agencies must provide early intervention, special education, and related services to children with disabilities (in 14 specified categories of disability) between the ages birth to age 18 or up to 22 (depending on the disability). This is the law that governs how early intervention programs collaborate with the public schools to offer a continuum of free and appropriate educational experiences to these children.  In Miami-Dade, developmentally delayed 3 year old children transition to the public schools' Pre-K ESE programs.  The Pre-ESE Program places eligible students into 9 different program models contingent on the child's needs and diagnoses. Students with an ASD diagnoses can be placed in either a highly structured full-day TEACCH classroom (8:10 am to 1:50 pm) or a less structured half-day LEAP classroom.  While enrolled in the school they may be offered weekly group speech and occupational therapy (OT) therapy.

My son was enrolled in a full-day TEACCH classroom for two years at a local elementary public school.  Throughout that two year period, I encountered many challenges starting with the administration of the school.  I don't know what it is but it seems to me that parents have lost their voice in their child's public school education.  In two years, I encountered two different principals at two different schools with the same philosophy in protecting their teachers even when their teachers are wrong. Rather than trying to resolve the issues being addressed to come up with a resolution that would satisfy all parties, both had said, If you don't like it, you can go to another school. What? Are you kidding me? I personally felt that these teachers weren't being held accountable by their school administrators. Add nepotism to the equation, as I believe was a huge factor in how my son's teacher was placed at the school in the first place, and the parents will never be heard.  Maybe it was just my luck, but my son's teacher had an attitude problem. Perhaps it was because she was very young and inexperienced, but the disrespectful cadence that she exhibited on a regular basis just didn't mesh well with my husband and I. When the teacher left on medical leave and a new teacher came in for the interim, we realized it was the teacher all along putting up the administration to make our lives difficult.  Kindness really goes along way, and I am so grateful that that is exactly what we get at my son's new school.  

One problem with my son's public school experience was the limited availability of full-day options in the county.  I needed a school placement closest to my oldest son's school because quite frankly, I can't be in two different places at the same time.  Schools offering the half-day LEAP program were plentiful compared to the full-day TEACCH program.  But what do you do with your child after 12 noon each day? Why do they have so many half-day programs versus full-day program? When young children are placed in a daycare, they are usually there all day while the parents are at work. Certain schools offered free bus transportation, but the thought of that made me frantic.  There was no way that I was going to consider bus transportation for my son, who had been getting out of strollers and seat belts since the age of 2 and who likes to run from you. He requires 24-hour one-to-one supervision which was not an available accommodation on a school bus.

Another problem I encountered with his public school education was that I never once met or spoke to his speech or OT therapist, despite my various requests.  Aren't they supposed to be more involved in the process? Why were they never in attendance at Individualized Education Plan (IEP) meetings as they had been when he was in the early intervention program? Besides, not knowing the people that are working with my child is a big deal for any parent.

Another challenge I faced was that the teacher refused to potty train my son despite the fact that it was one of his self-help goals entering the Pre-K ESE program.  They removed the goal during the first year. Come to think of it, he did not meet any of his goals at all during his two years at that school. Perhaps he just wasn't ready or he needed a smaller adult-to-student ratio. The adult-to-student ratio in the classroom was 1:3, but from what I understood, one adult was a part-time paraprofessional who was not there all day long.

Another obstacle was the school's lack of knowledge on how I can access ABA therapy services or on ABA therapy principles itself.  When I asked that behavioral therapy be offered to my son, they said it was not an option at that school.  The supervisor at the State's Agency for Persons with Disabilities had told me that the school is supposed to provide behavioral therapy upon request.  Like these challenges and obstacles there were many more, which I may decide to write about in the future. 

As I had mentioned in a previous post, other parents became my main source for information and referrals: camp programs, ABA Therapy, private schooling, etc. Through another parent I learned of an ABA Therapy provider and how to access these services through my insurance.  Similarly, through other parents, I learned of which private schools in the area were reputable and which ones I should avoid altogether. That is how I came to choose a private school for my son's kindergarten year, significantly funded through Florida's McKay Scholarship Program.

The school I chose had an excellent reputation among parents and teachers alike. They provide an individualized educational program specifically designed to meet my son's needs.  Plus they offer daily P.E. designed to teach these students to play sports independently, without adult assistance.  They offer, on an alternating basis per semester, instruction in martial arts, yoga, art and music. (I'm told my son loves yoga).  All the teachers are trained in ABA therapy principles and techniques and some teachers are even practicing, certified ABA therapists.  The adult-to-student ratio in my son's class is an amazingly low 4:3. But above all, the staff are so nice and respectful, and truly put your child's needs first. My son has learned leaps and bounds in just a few short months. It took just two weeks and the supports from his teachers and therapists to get him potty trained. My son is still nonverbal, and may remain nonverbal, but he is learning and capable of learning so much more, and that means the world to me.

I am currently reading the book, The Mind Tree: A Miraculous Child Breaks The Silence Of Autism, written by Tito Rajarshi Mukhopadhyay, a severely autistic and nearly nonverbal man who amazingly was able to communicate through writing. He described himself as a child feeling more like a spirit looking in from the outside of the world, than a human being. It was through learning at the Psychologist's office, e.g. building blocks, matching colors, etc. that he finally began to feel less like a spirit and more like a human being. He also wrote that it was through learning that he was able to stop fixating on certain haunting thoughts. Certain behaviors that I've observed in my child, he describes of having exhibited himself at similar ages. Needless to say, through this reading I'm gaining a new perspective on my son's thought processing and his capacity to learn. It has also validated for me the importance of ABA therapy and appropriate educational experiences for all children with autism. 

Probiotics

This recent article reporting the effects of probiotics on mice couldn't be a more fitting reference for my next post.  This research study involved treating mice specifically bred to display autism-like behaviors with a probiotic therapy. The results showed that the mice became "more communicative, less anxious and less likely to engage in repetitive digging behavior" after treatment.  My husband reminded me of a similar study on mice reported on TV years ago in which the probiotics actually improved the memories of the mice.   

Recently I read articles on the internet regarding a breakthrough report on autism and infant eye gaze.  For those of you who did not read this article, the breakthrough refers to differences in eye-gaze patterns in infants between 2 and 6 months and how those that eventually developed ASD showed steady decline in eye-to-contact with their caregivers.  This immediately reminded me of an article/post I found over a year ago online in which a grandmother, who was also a physician, cured her grandson from possible ASD during infancy with baby probiotics.  Her grandson was born with pneumonia as a result of prematurely inhaling fluids during childbirth.  He was treated with antibiotics at the hospital. Almost immediately the grandmother noticed that the infant was not making eye contact with anyone.  She purchased baby antibiotics and advised the child’s parents to give it to him with his formula.  The results were undeniable.  Within days the baby began to make eye contact, started smiling, and became more aware of his surroundings. She made reference to how the probiotics likely prevented the baby from developing ASD.

I found the post referenced above when I was researching associations between antibiotics and autism as a result of my own experiences.  As most parents of children with autism, I was researching the internet in search of an answer to my question of what had caused my son's autism.  Around the same time that I conceived Reagan I underwent dental surgery and took very strong antibiotics, Doxycycline, whose label clearly warns women from taking it during pregnancy or if they are planning to become pregnant.  The problem was that the oral surgeon that treated me gave out these prescriptions weeks, sometimes months, in advance of the scheduled surgery, with directions to take one (or two – can’t recall) prior to surgery.  My husband caught this but only after I had already taken my dose, ordered me to call the dentist and advise them that I might be pregnant and needed a new prescription for a different kind of antibiotic. 

Later on during my pregnancy, my first and only urine infection ever, caused me to be prescribed antibiotics.  My OBGYN gave me a prescription which I filled immediately. I began taking it as prescribed for a day until my doctor called to order me to cease taking those antibiotics as she was going to prescribe me a different kind. Just my luck! Two botched prescribed antibiotic treatments during the pregnancy.  But at the time I had no idea that antibiotics could be neutralized with probiotics – or the unthinkable – that it could cause autism in my child.  It is seemingly common sense. The antibiotics kills the bacteria in your body, including the good, healthy gut bacteria we need.  The probiotics puts the healthy bacteria back in your body. 

My son’s autism signs became apparent only after an ear infection at about 9 months of age was treated with antibiotics.  I didn’t know that I should give him plenty of yogurt or baby probiotics.  The awareness of the many benefits of probiotics is so much greater today as is evident in the many products that now carry probiotics, e.g. milk, baby formula, vitamins, etc.

With my daughter, I did things right from the start, despite the fact that I had a high-risk pregnancy.  My age alone (35) placed me in a high-risk bracket.  But never could I have imagined that my baby girl would not meet her growth milestones in utero.  She had IUGR (Intra Uterine Growth Restriction).  At birth, after just 34 months, she weighed 3.5 pounds. But thankfully, she was perfectly healthy.  Early on I was told to restrict my physical activity and eat a high protein diet.  Ironically, that was when my co-worker and friend introduced me to Greek yogurt.  I ate Greek yogurt with every meal.  And of course, yogurt is rich in live probiotic cultures.  Problems with her digestion led to the doctor's recommendation for a new formula, Good Start Soothe.  To my surprise, this baby formula also contained probiotics.  At 18 months, when the doctor recommended 2 percent milk, I began feeding her McArthur Dairy A-Plus milk with probiotics.  For my autistic son, Reagan, who is a very picky eater, I add Culturelle probiotic power packets in his juices.  

A healthy diet rich in probiotics is simply smart living, for everyone, especially children diagnosed with autism spectrum disorder.     

Finding the Right Therapist for Your Child

I quickly learned that my options with ABA Therapy were not as vast as with accessing speech and OT therapy services.  Some of the providers listed in the directory did not offer center-based therapy, which is what I was looking for.  Many provided home-based therapy where the therapist comes to the home to provide services to your child. If you have the space and a separate room in your home where these services can be provided, than certainly that would be a great option, as it is important for the desired behavior to be modeled in the home environment.  But center-based therapy can be very convenient, particularly during the parents' work hours. 

Initially, we went with the center that the nurse had recommended.  It seemed great, at first.  The facility had more than ample capacity to accomodate over 11 children at the same time.  There were surveillance cameras installed in each therapy room where the supervisor and parents could monitor the therapy session.  The parents would gather in a viewing room where they could oversee the therapy session with a monitor and earphones. However, the sessions were limited to two hours a day and they did not offer Saturday sessions, which for a working parent could serve as a wonderful break on the weekend.

The real problem I realized was the shortage in competent and qualified therapists.  There are several classifications of therapists based on educational attainment, board certification, etc.  The insurance provider caps payment to the provider based on this criteria.  Reagan, whose needs were very high, was being treated by an uncertified behavioral therapist without a college degree who relied on the supervisor to devise and help implement the program.  For this type of therapy, the insurance would only pay the provider a little less than $19/hour. The result was high turnover.  In just 6 months Reagan went through three different therapists - the first therapist only worked with him for one day and the last therapist, well it was evidently clear that she did not want to be there often telling me at pick-up that "they didn't get anything done."  After hearing that statement three times in less than two weeks, I knew I had to remove Reagan from the center all together.  The center's inhouse training program for staffing therapists was not adequately meeting my son's needs and I was wasting my money.  I was really sorry to see the second therapist go whose personality meshed well with Reagan, but this work was not her career as she had yet to finish her college studies.  To do this type of work, I believe you need to have a passion and a love for working with autistic children. And your education should reflect this work.

For the therapy to be effective in the long-term, you want to look for a therapist that is board certified by the Behavior Analyst Certification Board.  These therapisst command more money from the insurance provider.  Bachelor's level BCaBA's are paid about $46/hour by my insurance provider. A Master's level BCBA is paid about $64/hour. My search for a board certified therapist was not easy as  they are not generally listed individually in the insurance directory and the BACB online directory of those they certify does not disclose who they work for.  Finding a provider in the neighborhood that I desired was also a challenge.  Several providers were accepting new clients at the time.  Others had to hire a therapist specially for my son.  One center was just way to expensive requiring payment above the out-of-pocket limit allowable by the insurance company.  We waited 6 more months before he was able to be seen by his new therapist at his new therapy center. But the wait was worthwhile as all the therapists that are hired by this center are board certified. The spatial capacity at this center is more limited, and parents are not able to monitor the therapy sessions with surveillance cameras, but results are undeniable.  These therapists are dedicated, are passionate about their work, and they all at some point end up working with and getting to know your child through group therapy sessions and season rotations.    

It's really hard to keep up with the daily co-payments required by my insurance provider for ABA Therapy.  $15/day adds us very quickly, and this is with great health insurance through my government employer.  I've met other parents whose insurance copayment obligations were as much as $50/day.  And I've met other parents whose health insurance coverage was insufficient and they could not afford the co-payment so their autistic child went without treatment.

I always thought that Medicaid covered ABA Therapy services for their clients, but a recent article published in Autism Speaks enlightened me with the fact that Florida Medicaid had been denying coverage for these services all along- that is until November 10, 2013 when a federal judge ordered the Florida Medicaid program to immediately cover ABA therapy services.

It has not been long since private insurance providers in Florida have been covering ABA Therapy services.  In 2008, the Florida Senate approved the Florida Autism Legislation (Senate Bill Number 2654) specifically mandating that private insurance cover services of a Board Certified Behavior Analyst (BCBA) in the treatment of individuals whom have a diagnosis of Autism Spectrum Disorder.   But the coverage is limited.  You can only bill the insurance for a maximum of $36,000 a year for a lifetime maximum of $200,000.  And only 35 states currently have adopted autism insurance reform laws. I could not imagine what these parents living in the other states must go through just to get their child the treatment that they need.  Being that autism has become a national epidemic, I truly believe that autism insurance reform should be a Federal mandate applicable across all states,  I'm hoping that the implementation of Obamacare will hopefully help those families receive the coverage that they need. I think I read somewhere that certain autism advocate legislators like Congressman Menendez made sure to include this language in the federal Affordadable Care Act bill. Still, even if every state were to adopt autism insurance reform laws, I still believe it would not be enough.  We need to have in place federal appropriations to cover ABA Therapy services for all children on the spectrum - a mechanism that will offset the out-of-pocket costs that inurance companies are not obligated to pay.  

Accessing ABA Therapy Services

So what is ABA Therapy? ABA Therapy is short for Applied Behavior Analyses Therapy.  Applied behavior analysis (ABA) uses techniques and principles that explain how learning takes place, like positive reinforcement, to bring about meaningful and positive change in behavior.  ABA Therapy is provided daily for up to 4 hours a day, 12 - 40 hours a week.

How do I get my son access to these services? The Early Steps program had only provided him with OT and speech therapy. The Pre-K ESE Program only provided him with OT and speech therapy. But he didn't really benefit from speech therapy services at all. He went from speaking a few words like "more" and "bubbles" to eventually not saying anything at all. In my opinion, for students like Reagan, the federal monies spent for speech therapy are wasted.  What he really needed was behavioral therapy services.  At his IEP meeting I asked the school whether they could provide these services to my son. They said they do not offer them and they don't allow a private therapist to work with their students at their school. 

I called my health insurance provider and they couldn't tell me what I needed to do.  They said they would send me information in the mail, which I never received. I would search their online provider directory and not find any behavioral therapists listed.  I ended up accessing speech therapy services for my son instead.  He went twice a week for 30 minute intervals.  I knew he needed more, I just didn't know how to navigate the system to get him what he needed.

In the Fall 2011, on Reagan's 4th birthday to be exact, my husband had a stroke that led to renal (kidney) failure.  He was hospitalized for almost a month on dialyses and eventually made a miraculous partial recovery where he was removed from dialyses.  I say partial because he still suffers from permanent ailments today as a result of his renal failure.  Ironically while at the hospital I met a nurse supervisor who also had a child with autism.  Her son was already 12 years old and she had already been through all the experiences and lessons I had only begun to experience myself.  Because she happened to have the same health insurance provider as I had and had already accessed ABA Therapy services for her son, she know exactly who I needed to call - the mental health provider contracted by the insurance company.  They had their own separate provider directory which is why I had not been able to find a list of behavioral therapists.  She also gave me the name of her son's provider.  Right away I made the call.  

She also advised me of Florida Medicaid Waiver - she told me that I needed to call and get his on the wait list right away.  The Florida Medicaid Waiver is supposed to cover behavioral therapy services once all your benefits with your insurance provider have been exhausted.  It was then that I understood how valuable other parents’ experiences and knowledge can be to a parent with special needs.  Eventually other parents of children with autism became my guides.  Teachers, doctors, and case managers couldn’t give me the answers I needed.  Other parents did.          

From Screening to Diagnosis

The developmental screening confirmed what we already knew but did not want to believe.  Not only was he delayed, but significantly delayed in all developmental areas except the area responding to physical/motor skills.  From the time I made the appointment to the time of his screening, we had already lost 2 and a half months.  He was screened in October of 2009 and he did not begin receiving services until February 2010.  We lost a total 6 months of services by the screening process alone. I advise all parents to get their child screened as early as possible.  Make your appointment while your child is months old and as soon as you suspect any delays.  Know the signs – learn what to look out for here.  Don't wait and think that your child will catch up. 

Once eligible, the program provides therapy services to the child at no cost to the parent either in your home or in an educational setting.  We chose the educational setting.  While enrolled in an early intervention educational program, your child receives both occupational and speech therapy. 

Reagan was a very happy child.  He transitioned very easily into the school environment.  Certain questionable practices at his first school placement led Dad and I to request a transfer for the next school year. Because he wasn't three when the next school year began, he was able to benefit from another year of the early intervention program.  The next placement was a huge improvement.  His teacher was a wonderful person.  They taught Reagan to eat with a spoon all by himself using a special, adaptive spoon and bowl introduced by the occupational therapist. They taught him to stay seated during activities by sitting on a gel pillow. This was no easy feat. (He still doesn't stay seated for longer than a few minutes while at home or outside the school environment). 

But still, he wasn't like the other children in his classroom.  He was far more hyperactive than his peers.  He flapped his arms when he was excited.  He showed very little interest in playing with his peers or participating in group activities. He was always content playing with toys all by himself.  He also loved lining up his trains. He was always taking off his shirt. He would even play pranks on his teacher by throwing the shirt over the fence when she wasn't looking. He would get so excited when she finally noticed and would watch her retrieve the shirt. At home he jumped.  He jumped all day long on the bed - my bed.  As a toddler he jumped in his play yard so often he went through three different ones.  His need for air and all these other symptoms were all signs that I needed to get him evaluated for the unthinkable - Autism Spectrum Disorder.  Strangely no one told me to get this done.  I had to ask.  How do I get him diagnosed? Where should I take him? Had I not asked, he would have gone undiagnosed for at least another year.

I took him to a Neurologist at the Miami Children's Hospital.  Right away he was diagnosed with PDD and given a prescription for ABA Therapy and the LEAP educational program.  The LEAP program, what is that?  How am I suppose to get him into that?  There are now early intervention programs specifically designed for ASD children 0-3 years old. Reagan probably would have benefited from such a program.  The option was not on the table at the time.  But I did eventually find out what the LEAP program is.  It is the self-contained ASD Pre-K ESE half day program offered to students between the ages 3 and 5 who need a less structured environment.  Reagan needed a highly structured educational environment and as a result transitioned into a classroom that followed the TEACH model. 

As for the ABA Therapy, it took me over a year to finally access these services. Each time I called my insurance provider, I would get nowhere.  I would search via the online provider directory and not find any available behavioral therapists.  I would call each speech therapist listed in the directory only to be told that they did not provide speech therapy to children or Autistic children.  One speech therapy provider had advertised ABA therapy services on their website.  When I called, they said they no longer provided such services. I didn't know what to do.  The school therapists did not know what I needed to do either.  His teachers didn't even know what I needed to do.  So I didn't do anything for about a year with regards to accessing ABA Therapy services.  Had the early intervention services provided access to ABA Therapy services, I would have avoided this gap in service.

The Passion Behind this Blog

I created This blog in response to my own struggles and experiences in dealing with my son, Reagan's, Autism.  Like most children diagnosed with Autism, the symptoms were not so evident during his first year of life.  He spoke words - more words than he speaks today at 6 years of age.  At just 6 months old he had said his first word, "Yes."  

A few months before his first birthday Reagan became very sick with the flu and an ear infection.  His congestion was so bad that Dad would stay up all night monitoring his breathing and removing his mucus through any means necessary.  Reagan was too young to use the nebulizer machine or take cold/cough medicines, we were told.  He was treated with antibiotics for his ear infection.  The cure alas was a simple Epsom Salt vapor bath.  By the time we were advised of this remedy it was a week into his cold.  I wish I had known sooner.  And I wish I had started him on baby probiotics upon finishing his antibiotics.   

A few months after his first birthday, Reagan discovered finger foods. And not just any type but the oh-so convenient fast food chicken nuggets and french fries. The once "wonderful eater" no longer wanted to each from a spoon.  Aside from fruit, which thankfully he loves, his diet significantly degraded.  This was another "I wish I had done things differently" moment.

By the time he was 19 months old, the signs had become apparent. His speech began to disappear.  His eye contact was less direct.  He wouldn't respond to his name and he wouldn't point to ask for things.  It was easy to misinterpret his autism by his happy disposition.  That was around the time that a childhood friend of mine told me to get him screened with the Early Steps early intervention program. It is the Federal government's way of taking care of all children ages 0-3 with development delays.  

Click here to find an Early Steps program office.   

Our journey since the day I made the appointment with the Early Steps office has brought my family and my oldest son many challenges and many blessings.  It was really hard to lose all those expectations I created for my son when he was first born.  It was even harder to see this loss in my oldest son.  All he ever wanted was a little brother.  When God finally gave him a little brother – he gave him one that he could not converse with and has to constantly help watch over.  I had gotten through some very difficult struggles in the past.  While difficult at first, I always persevered and eventually got to a place where the struggle seemed unrecognizable, as though it had never happened. With Reagan's Autism, the struggle never disappears - it never ends.  You persevere by getting through each day - one moment at a time.  It's true that I wish I could do more for my son. And I wonder whether autism could’ve been avoided had I done things differently.  But that is the fire that has been fueled within me.  It is this drive to do more, not just for my son but others like him and others like me, that is the inspiration behind this blog.