Why I decided to blog

I decided to start a blog on mild autism at the urging of family and friends. I have a son on the spectrum. Although his autism is considered mild, it is still difficult to deal with. Life can be hard and confusing with his daily struggles. That being said, I am a stay at home mom and I have dedicated my life to him and making sure that he has access to anything and everything that can help him.

Unfortunately, there isn’t a manual or guide for autism. Every child is different on the spectrum and what works for us may not work for someone else. One of the biggest struggles for me was finding that help for him. Different therapies, discipline, diet changes, homeopathic remedies…. there are so many things that can help autistic children. I remember when my son was diagnosed at age 3 the psychologist sent me home with 1 piece of paper that referrred me to aba and speech therapy. I called every aba therapist in our area and was told by everyone that there was a 6 month wait list. I put my name on every list in cities up to an hour away. We also signed up for occupational therapy. We were in speech therapy at the time because my son became nonverbal at 18 months.

It was a very emotional time for me. I wanted to heal my child more than anything in the world. I didn’t want him to struggle. I spent hours every day researching anything and everything to do with autism. I was in denial for a long time because my sons autism was considered high functioning. He was very social, but struggled with communication. I kept thinking- he’s only three. He will grow out of this. This can’t be true. He’s so smart. How could this be autism?

Now at age 5 I’ve come to terms that my son has autism. Although it is mild, it’s still autism. He still struggles. There’s still a lot of work to do and a long road ahead of us. Autism is like that. It never ends. I can help my son conquer a “bad” or “abnormal” behavior, but there is always something else to work on. Something else that becomes a struggle for him that I want to fix. I know that not every person agrees with that statement. That I want to “fix” austitic behaviors, but it’s our choice as a family to make my sons world easy for him. I want him to succeed at everything his heart desires to do. I want it to be easy for him to fit in. I want the best for him and that is what this blog is about. My journey to find the best for him and in him.

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Diagnosis

E has always been like a bulldozer plowing through life. He developed normally and was walking at 8 months. He played normally. He babbled. It took him a long time to say mama, but he said dada, cookie, and giggle by the time he was 18 months. Then his words seemed to stop growing. He no longer could say giggle and any other words learned were jumbled sounds. For instance Grammy or Gran was Key-key and motorcycle was gee-gee-ga. We knew something was wrong so we had him evaluated by an early intervention service and we were told he had a speech delay.

His first speech therapist was awesome. She was patient and sweet. She came to our home for an hour each week and did play therapy from the time E was 2 1/2 to 3. After working with him for a few months she asked me if he always lined his toys up. I remember thinking that was an odd question. I replied that he loved trains and lined his cars or trucks up to imitate a train. She then asked if I ever had him evaluated for a developmental delay. I told her we did and were told he just had a speech delay. She then said that E didn’t make great eye contact, lined up his toys, and had poor fine motor skills and all of those things were symptoms of autism. She encouraged me to get another opinion because it’s a lot easier to treat if you catch it early. I was quite irritated with her for that statement.

However, I did get another evaluation with our public school system when he turned 3. Again, after 4 hours of testing and observation I was told that there was nothing wrong with him besides a speech delay. Although, E was still not communicating with us. He still wasn’t making eye contact. He still didn’t have good fine motor skills.  He also didn’t have a good awareness of space. After a few more months of questioning everything we went to see a developmental psychologist. She did a series of tests for 20-30 minutes. Then she told us he had autism. This was June of 2015 and E was 3 1/2.

To this day I’m disappointed in the testing and consultation. I do not think that psychologist did a good job. She was quick and matter of fact. Your kid has mild autism. Here’s a list of speech and aba therapists in your area. Here’s a referral stating his diagnosis. Good luck. That was it. Although her diagnosis was accurate, she wasn’t very warm for a person delivering heartbreaking news to a young family. There was a level of peace of finally having a diagnosis which helped us receive services for him, but autism is a difficult diagnosis to come to terms with.

After receiving the diagnosis of autism I spent days calling every number on the list I was given. I was told that there was a 6 month wait list for aba therapy. That was devastating. I was told early intervention was key and I had to wait 6 months?! Then there was the fact that our insurance didn’t cover aba therapy. Lovely. E’s recommended aba therapy was 20 hours a week. Billed at $50 an hour. That meant that we would have to pay $1,000 a week to help our child- out of pocket.

I knew there had to be another way. We couldn’t afford the recommended therapies. Speech already cost us $200 out of pocket every month- with insurance. So, I researched. Day after day I spent hours reading anything and everything related to affording autism therapies. I finally found a blog that another autism mom wrote with an attached list of grants and scholarships. I applied for two grants (you can find them here http://www.autismsupportnetwork.com/resources/autism-grants-united-states) and a tax credit scholarship (the gardiner scholarship). I also found a local organization that offered free occupational therapy (http://floridaelks.org/helping-children-develop-grow). Because our insurance coverage for special needs was terrible (although we paid $900 a month for insurance coverage) we received both grants and the scholarship. Along with the OT therapy. What a whirlwind that was. I went from being devastated and stressed because I couldn’t afford to help my child to overwhelmingly thankful that awesome organizations exist to help families like ours.