A Mom Who Puts a Positive Spin on Autism {Parenting Perspectives}

Reflections on parenthood from From Natalie T.

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Following a healthy, full-term pregnancy my husband and I were blessed by the arrival of our second son, James. During his first year James developed normally and reached all the typical developmental milestones. However, shortly after his 1st birthday things began to change. We noticed that the few words he had disappeared, that it was harder to get his attention and that he didn’t respond to his name as often as he used to. We attributed it to him focusing on more physical activities as he was learning to stand and walk and had just redirected his energy and focus to this versus his speech and communication skills. 

At his 15 month checkup there was no improvement so his pediatrician recommended we start him in the Early Intervention Program to improve his social and language skills. In November at his 18-month checkup it was recommended that we see a Developmental Pediatrician just to rule out certain conditions as well as check for a developmental delay. I quickly called as many Developmental Pediatricians offices as I could find and, was discouraged to learn that they all had a 6-12 month wait in order to be seen. 

While we waited for this appointment we added new services through Early Intervention so he was now receiving Special Instruction and Speech Therapy once a week. We also discovered he had some sensory processing issues and were able to add Occupational Therapy to help in this area. James made some progress but was still not interacting or communicating like most 2 year olds.

Finally, after 8 months of waiting, we headed to The Children’s Hospital of Philadelphia for our 4-hour evaluation with several different specialists. They put him through various tests, games and activities to see what he was capable of and where he was lacking. Then the waiting began. We had to come back two weeks later to find out the results. 

As a parent despite knowing that your child shows signs of Autism you continue to hold out hope that maybe it is something less severe. I spent hours researching the signs and symptoms of Autism but found while he exhibited a handful of symptoms, there were a large number that he did not have. When I thought of Autistic children I pictured kids who made no eye contact, did not interact socially with their peers and who were unaware of others feelings or emotions. 

This was not my son. My son makes limited eye contact, enjoyed interactive games like paddy cake and peak-a-boo and loved running around and chasing his older brother. He would also show empathy and become very upset and even cry if his brother was crying. Although I tried to realistically prepare myself for the worst, I continued to hold out hope for the best. 

I was extremely anxious as we headed to CHOP for his results. The doctor came in and very calmly told us that James does in fact have Autism. Despite having prepared myself for this news it felt as if someone had just sucked all the air out of the room. I fought with every ounce of strength in me to hold back the tears and reminded myself that I needed to focus, take in what the doctor was telling us and ask as many questions as possible while I could. 

Over the next hour I continued to fight back the tears but managed to take in most of what the doctor was saying. Towards the end of the appointment the doctor left the room to get us some information and I broke down. I continued to cry the whole car ride home and would break down in tears every time a family member or friend would call and I had to tell them the news I had been dreading – James has Autism!

That night I wrote my feeling in a journal, something I never do, but thought it would be cathartic. Here is a little of what I was experiencing that day:

Today was a day that will change my life forever. A day that caused me to question so many things that I had planned for the future and caused me to feel that I have very little control over my life. Today, July 11, 2012 I found out my sweet baby boy James has Autism. I realize that life as we know it is about to change drastically but the scary part is that I’m not quite sure how. I am overwhelmed because despite knowing that all kinds of programs and treatments exist I have no idea where to start. I feel a sense of guilt wondering if it was something I did that may have caused this, something he was exposed to during pregnancy, something I could have done differently to prevent this. I feel like I have just become part of a club, a club that no one wants to be a part of. That I am now part of a special kind of family and already know that I will feel an instant bond and connection with any other parent who has an Autistic child because only they can truly understand what I am going through and all the fears that are swirling through my head. I wish the doctors had more answers but there is still so much they don’t know. I want them to reassure me that my child will be fine. I want them to tell me that with enough therapy and hard work in the end I will have a perfectly normal child who is able to live the life that we have envisioned. I mourn for my little boy because no parent wants their child to struggle or be at a disadvantage. A billion questions fill my mind: will he ever talk, be able to make friends, go to a normal school, go to college, live on his own, get married and have a family of his own one day? I am angry and question why this happened to my baby but, at the same time feel guilty knowing thousands of parents around the world are watching their children suffer and die while I have a sweet, otherwise healthy little boy. As I watched James sleep tonight I vowed I would do whatever it takes to give him the help and tools he needs to reach his fullest potential. I suddenly feel such a weight on my shoulders knowing that all the responsibility of his quality of life rests in my hands and that I have to be his advocate, fight on his behalf and make sure he gets all the tools and therapy he deserves. 

As I awoke the morning following the diagnosis I decided it was time to stop feeling sorry for myself and instead time to take action. I poured myself into learning all I could about Autism the possible causes, treatments and therapies (for more info on this see below). I ordered books from the perspective of parents, therapists and doctors so I could learn from their research and experience. I learned about the Biomedical approach to helping Autistic symptoms using supplements and alternative treatments to heal children from the inside. I learned about Applied Behavioral Analysis (ABA) therapy programs scientifically proven to help with communication. I decided I was going to put a plan into place to hopefully one day get my son off the Autistic Spectrum and help him lose his diagnosis. I was encouraged by the stories of parents whose children had severe cases and with the help of a rigorous therapy program saw their kids recover and lose their diagnosis! 

It has been just over a month since James was diagnosed. I have learned so much about Autism, the treatment options both mainstream and alternative as well as what they believe causes Autism in some children (for more information on this please see below). We are taking steps to try both traditional therapies such as speech and ABA in addition to alternative approaches such as supplements, diet change and possibly even using a hyperbaric chamber. 

My days are now filled with coordinating up to 20 hours a week of various therapy appointments as well as trying to implement a new and very specific diet. It’s a little surprising but this diagnosis has brought our family closer together. We realize it is a big responsibility and that we need to be a close team in order to have the best results. I also remind myself that God doesn’t make mistakes and that everything is part of a larger plan. Even though right now I may not be able to understand, I trust that God has a bigger plan for James’s life and know that He doesn’t give you more than you can handle. 

Regardless of the progress James makes in the coming years, I am extremely blessed to have two wonderful boys and a loving and supportive husband as well as family and friends who are there for us. I truly believe that even something like Autism can be turned into a positive experience – it all just depends on how you choose to look at it – and I choose to be optimistic and determined and believe that someday my son will be able to live the live we have envisioned for him.

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Many thanks to Natalie for sharing her story. We have many more to come. Click here to read more Parenting Perspectives posts. 

See below for more info on Autism.

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NOTE: Please note that I am not an expert or medical professional. I have spent several weeks learning as much as I could about Autism and it’s possible causes and treatments and the following is the common thread that I found amongst leading Autism experts as well as the common theme amongst parents of Autistic children.

What is Autism: Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. – Autism Speaks.org

Symptoms of Autism: - www.webmd.com

• Extreme difficulty in learning language.
• Inappropriate response to people. A child with autism may avoid eye contact, resist being picked up or cuddled, and seem to tune out the world.
• Inability or reduced ability to play cooperatively with other children or to make friends.
• Inability to understand other people's feelings.
• Need for a rigid, highly structured routine -- and being very distressed by changes in routines.
• Extreme hyperactivity or unusual passivity, and extreme resistance to change.
• Aggressive, self-injurious behavior.
• Repetitive body movements, including pacing, hand flicking, twisting, spinning, rocking, or hitting oneself.
• Insensitivity to pain or lack of response to cold or heat.
• Impulsive behavior and no real fear of dangers.
• An unusual attachment to inanimate objects such as toys, strings, or spinning objects.
• Frequent crying and tantrums for no apparent reason.
• Peculiar speech patterns. A child with autism may use words without understanding their meanings.
• Abnormal responses to sensations such as light, sound, and touch. At times, a child with autism may appear deaf or may be extremely distressed by everyday noises.
• Exhibiting any of the above symptoms does not necessary mean a child has Autism. They should be evaluated by a physician in order for a diagnosis to be made. 

Possible Causes of Autism

While no one knows for sure what exactly what causes Autism, most experts believe it is due to a combination of factors.

Genetic Component: 

• Many scientists believe there is a genetic component but are not sure yet which gene is responsible
• A family history of autoimmune diseases may lead to a weakened immune system
• Common Auto Immune Diseases include: Chronic Fatigue, Fibromyalgia, Rheumatoid Arthritis, Lupus, Thyroid Disease, Celiac Disease, Diabetes, Addison’s Disease, Graves Disease, Multiple Sclerosis, Inflammatory Bowel Disease, Crohn’s Disease, Leaky Gut
• It is believed that a weakened immune system may cause a child to be unable to handle all the toxins they are exposed to both in the womb and after birth. A child with a normal healthy immune system is able to clean out or detoxify their body as toxins are introduced (through foods, vaccines, medications, environmental factors), while a child with a weakened immune system cannot detoxify properly and the toxins build up causing many of the symptoms of Autism. 

Higher Exposure to Toxins:

• While studies have shown that there is no relationship between vaccines and Autism, many Autism experts believe that for children with a weakened immune system the amount of vaccines received in such a short period of time does not allow for their body to properly process and rid itself of toxins. While most children will receive vaccines and have no adverse reaction, experts believe that some children may be negatively affected. Many parents of Autistic children have reported that with each set of vaccine shots they saw their child’s symptoms get worse. 
• In 1984 children received 10 vaccines and the rate of Autism was 1 in 10,000. Today children receive 36 vaccines and the rate of Autism is 1 in 89. While better awareness and diagnosing is definitely a reason for the increase in numbers it cannot be considered the sole reason for numbers to rise at what many are considering epidemic proportions. I am not in any way advocating that people refuse to vaccinate their children. However, I think that further studies need to be done to ensure safety. Many feel that certain vaccines may not be necessary or that vaccines should be spread out rather than given all at once thus allowing the child’s body a better chance to process the vaccine and any toxins that may be in it. 
• Mercury a known poison is used as a preservative in many vaccines, including flu shots. Even a small amount of mercury can be toxic and, mercury targets fatty tissues such as the brain. Many believe that many of the Autistic symptoms are due to mercury poisoning. Research has shown both Autism and Mercury poisoning exhibit a lot of the same symptoms. For a comparison chart see: http://www.heart-disease-bypass-surgery.com/data/articles/44.htm

Possible Treatments for Autism:

• Therapy: Applied Behavioral Analysis, Speech Therapy, Special Instruction and Occupational Therapy have all been shown to be helpful.

• Biomedical Treatments: Diet Changes such as removing gluten, casein (milk protein) and sometimes soy along with artificial colors, flavors and preservatives and sticking to an organic diet. Adding vitamin and mineral supplements to help strengthen the immune system. Chelation, which is using specific supplements to help remove toxins such as heavy metals. Treating high levels of yeast and alternative therapies such as using a Hypobaric Chamber have been used to help heal Autistic children. 

For more information on Biomedical Treatments you can check out http://www.defeatautismnow.net.