The Journey Begins…

I began this journey with my son seven years ago.  He was a bright energetic toddler who had reached all his milestones, until he took his 18 month round of immunization shots.   That was the day my family’s life changed.  Very soon afterwards, I saw his speech start to diminish.   I immediately took him to the pediatrician to find out what was wrong.  She explained to me that he was probably just developing a little slower with speech.

Evaluations and Therapy…

I watched my talking toddler change right in front of my eyes from speaking words to babble.  I knew something was wrong, so I headed back to the pediatrician and asked her for an MRI and to get him evaluated for speech. At first she was reluctant about both requests but after some persistence, my son received a speech evaluation.  Fortunately, the MRI came back negative, which I was thankful for but his speech evaluation showed that he definitely needed therapy.

Once he was on board with speech, I also pushed for Occupational Therapy because it seemed as if his fine motor skills weren’t as strong as they needed to be.  For almost a year, my son received ST and OT services and I didn’t see any real improvements.  I was frustrated over this but hoping there would be an improvement soon with his speech.

One particular OT session, his therapist made the comment that sometimes children who are on the Autism Spectrum, deal with a lot of fine motor issues.  When she mentioned the word AUTISM, I sat there in shock.  I remember thinking that my son could not have autism.

Immediately, I went to every blog and website I could find about Autism Spectrum Disorder (ASD). I read various books on the subject as well. The more I researched it, I realized that my son was dealing with the disorder.

Without delay, I inquired about receiving a referral for a developmental pediatrician at his doctor’s office. After numerous failed attempts to find one that took my insurance, I finally spoke with a woman who told me about an Autism center in my city.  She informed me that they did an extensive evaluation to diagnose children on the spectrum.

My son’s doctor explained that the wait list for the center was a year- long and it would be easier to continue looking for a private developmental pediatrician. I continued on that route for about 2 months, then I decided to call the center myself.  Straightway, I got an appointment for an evaluation.

It’s ASD…

At the autism center, the developmental psychologist diagnosed him with ASD.  She gave me information from Autism Speaks, an organization that helps in various capacities for families dealing with ASD.   She explained that they had a packet of information for new families that discover their child has been diagnosed with the disorder.  The psychologist also refereed my son to their language clinic that dealt with Applied Behavior Analysis (ABA), an intensive therapy that can help with children’s language.

I went home feeling overwhelmed.  At first I didn’t want to talk about it with anyone, especially my husband or family members.  Finally, I had to tackle the “bull by the horns” and see what I could do to get my son everything he needed to deal with the disorder.

I enrolled him in a special needs preschool and got him on board with the language clinic at the Autism Center, thanks to a grant he received from them.  In two months, his ABA therapy did more for his language, than one year of traditional speech therapy. My son was beginning to say words again and I could see a bright light at the end of the tunnel.

Biomedical…

As I continued my research into ASD, I found out about a variety of nutritional supplements to aid with his speech. I added a multi vitamin, calcium and folinic acid to his diet but the biggest wow came from B-12 (methyl cobalamin form).  When we introduced this to my son, his speech improved even more.

Since he already had a dairy allergy from birth, I also decided to try him on a gluten free-casein free (GFCF) diet to see if that would help as well.  It did, especially for any hyperactivity that he encountered.  This was pretty easy for me to do except for Macaroni and Cheese.  My son loved it so much that he didn’t want to eat any dairy-free alternatives, therefore, I had to completely leave it off the menu.

I also got him a MAP doctor.  These doctors help incorporate biomedical therapies into your child’s daily regimen.  Fortunately, I was able to get a doctor who dealt with biomedical and traditional medicine, so she understood the connection for dealing with issues across the gamut. One of those concerns my son encountered was focus.

My son was doing great and then all of a sudden his attention was all over the place.  She suggested that he should be tested for yeast.  We found out that my son did have a yeast issue and he received treatment for it. After receiving the yeast medicine, his focus returned and it had even improved. I was blessed to have a MAP doctor for this type of intervention because it would have been hard to get his pediatrician to test for a yeast problem.

Light Diminishing…

Everything seemed to be working well for my son until his grant ended after a year and a half at the center.  He no longer received ABA services and to get a private therapist was extremely costly.  Therefore, my son was only able to continue with speech and occupational therapy, both privately and at pre-school. It was a blessing that he could continue with these services but slowly we could see that his speech was at a stand- still again; even some words he had added to his vocabulary had gone away.

By the end of pre-school, I was extremely frustrated because there still had been no improvements in my son’s speech. I continued to research ways to help him. We even sacrificed to pay for ABA privately but the cost was too much for us to carry by ourselves, so we had to take him out of it.

He was about to begin kindergarten in an Autism classroom and I felt overwhelmed with the feeling that I wasn’t doing enough. I never thought that by kindergarten my son would not be speaking sentences.  I would see other kids his age speaking to each other but my son was only saying a few words and the pain was beginning to hit me hard.

I was also finishing my Masters of Fine Arts Degree at the time and I decided to write my final project (screenplay and thesis) on a child dealing with Autism Spectrum Disorder.  This project pushed me to a deeper level of understanding not only about ASD but how families cope with it and trying to find ways to help their children deal with the disorder.  I knew that I had to do more for parents and children living with ASD because it is not a journey for one person, it requires assistance from a variety of sources.

New Hope…

I realized I couldn’t deal with this alone.  I decided to join TACA (Talking About Curing Autism) to get around other parents dealing with ASD.  It was the first time I had spoken to anyone outside of immediate family, teachers and health practitioners about my son.   This helped me to open up to my family and friends about what we had been dealing with for 3 years.

My son started kindergarten and fortunately his teacher understood the battles we were fighting. We received his first IEP (Individualized Education Program) that would assist the teacher with his education plan in the classroom. She also incorporated some ABA in his day, which also helped as well.  I felt a little relief knowing that he was getting additional assistance in the classroom.

Another beacon of light came through by means of insurance. Finally, after many years of people fighting for insurance reform, my state announced that ABA would be covered by some insurance companies.  This meant a world of difference for my son and many other families dealing with ASD. I immediately enrolled him in an ABA program. I also got him involved with music therapy because he enjoys all kinds of music, especially jazz. He also loves playing keyboards, singing and dancing.  From past experience, I knew that the ABA intensive therapy would help him improve his language and adding music would broaden his skills. As my son ended his kindergarten year, he began to speak more words and I saw light at the end of the tunnel.

First Grade Blues…

I was eagerly waiting for first grade to begin for my son.  He was getting a new teacher and a new classroom.  He was also excited to start classes again and see old friends.

Unfortunately, his class was overcrowded, and the first three months were extremely difficult because he was not receiving the attention he needed.  Finally, after what seemed like an eternity, they were able to get another teacher and split the classes.

My son was behind in coursework and we had to play catch-up.  He seemed to be at a stand still with ST & OT and even with ABA.  Music was the only therapy he seemed to be making excellent strides in.

Suddenly, he became interested in his iPad again with an application called Proloquo2go ( This app has so many ways it can be used with building words and sentences).  He was so excited to use it and he gained more words and it helped with pronunciation. I asked his teacher could we incorporate it in his school day, but it became difficult to accomplish this task.  The Augmentative & Alternative Communication (AAC) specialist needed to come in and evaluate my son in the classroom.  This did not happen until the end of the school year but she did approve the device for second grade.

The Fight continues…

My hope is that he will continue to build on his speech, so that he can speak full sentences as we continue on this journey.  I will keep fighting and through my story and every other family dealing with the disorder, we can help each other along the way with ASD.