Lessons from the Autism Journey

October 15, 2013

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mia-image1Mia was a premature baby, born at 34 weeks.  I had a very complicated pregnancy, and to this day doctors still don't understand my pregnancy.  I lost 40 pounds while pregnant, yet was never nauseated or sick.  I had my first hospital visit at 8 weeks, was put on bed rest at 14 weeks, and experienced contractions from 20 weeks on.  I had 14 ultrasounds while pregnant.  At 29 weeks, I was in the hospital for three days on a magnesium drip to stop labor, at which time I also got steroids to develop Mia's lungs.  They told me if I hadn't had these injections, using information from her ultrasound history and her growth rate, Mia would have weighed 3 pounds 8 ounces full term.  Instead, she was born weighing 5 pounds 1 ounce on October 21, 2009.   Mia spent 13 days in the intermediate nursery. She required oxygen, had more than 40 feeding tubes placed, had jaundice, and was treated for pneumonia (which we didn't find out until we got her medical records over one year later).  I have since had to have a hysterectomy.

Mia was a pretty typical newborn. I had asthma as a child and noticed her wheezing at 8 weeks old.  My pediatrician at the time gave me the, “Oh, you’re a first time mom, you’re just too worried” speech.  Mia didn't meet her milestones like she should, but that pediatrician kept telling me, “Well, she was a preemie, you’re just too worried.”  Mia slept really well as a baby, and seemed to just be a very good baby.  We thought we were so lucky.

This treatment list is being shared for educational purposes only. It is not intended as medical advice. Please seek assistance from your health provider regarding any treatments that could be available for your child based on his/her unique needs. What is a Treat Autism Chart?
This treatment list is being shared for educational purposes only. It is not intended as medical advice. Please seek assistance from your health provider regarding any treatments that could be available for your child based on his/her unique needs.
What is a Treat Autism Chart?

If I had only known the signs, I could have picked up on things earlier.  Mia never really cared if she was held or not, and didn't mind being in her room by herself.  She was watching TV at 4 months old, and that is still her comfort.

When I got up on the morning of September 18, 2010, Mia was having difficulty breathing and seemed to have cold type symptoms, but no fever.  Because we live in a small town, I decided to take her to the ER where her pediatrician has privileges, about 30 miles from our house.  By the time I arrived, Mia had a temperature of 103. She was diagnosed with pneumonia and sent home with antibiotics.  But by the time we got back home, I had to take her to the local ER, and then she was transported by ambulance to the nearest children's hospital.  She spent three days in the hospital and was on continuous breathing treatments for 26 hours.  During that stay, she was also diagnosed with asthma. This was when we decided to get a new pediatrician (right after a set of vaccines).

From that point on, Mia had pneumonia nine times in a year’s time frame.  We went through an entire year of infections, ear tubes, antibiotics, steroids, etc.  During that time, I remember feeling the dread of what the next day would bring.  I was searching on the internet, trying to figure out why Mia was always sick, and not meeting her milestones, etc.  Autism kept coming up in my searches, so I decided to start researching further and decided to talk to Mia's doctor.

We got our diagnosis in August 2011, and our lives have been forever changed.  The first thing I could think about was what could I do to help my daughter.  The websites that I kept coming across were TACA and Generation Rescue.  We were lucky enough to receive grants from both, which changed our lives forever.

Mia was a child who could barely say two words and never at the appropriate times. She never said “Mommy” or “I love you.”  She couldn't sleep, was always sick, had a bloated belly, rashes galore, and hardly interacted with others. TV was the only thing to keep her calm. She wouldn't look at you, and she didn't care to be touched or held, but would scream through the night and we wouldn't know why. She was receiving allergy shots all the time, breathing treatments every 2-4 hours, yet continued to have infections.

What is ATEC?
What is ATEC?

Since starting biomedical treatments, finding a DAN [now MAPS] doctor, and following the research found on the TACA website, Mia is a whole new child.  Now, she is such a little diva. She is speaking in short sentences, is loving, says mommy, gives hugs and kisses, is able to go outside, and interacts with adults very well.  We are working on her interactions with kids her own age, but she is so much better with her peers than before. She is sleeping, we are working on food programs, and teaching her things I couldn't even think about when I couldn’t see the light for the next day.

Mia is now able to follow small directions, explain what she wants or needs, and if she doesn't know how to verbally tell you, she will take you and show you. She says new words daily. We continue to battle yeast and some other issues which just take time.  You can’t do everything at once, and Mia is still young.

We went gluten-free first, which helped with her being in our world, improved her speech and interactions, and so many other things.  After going casein-free, she started sleeping. The constant runny nose that she had for 18 months has stopped, and she has been able to come off all her breathing medications.

Mia has been doing 40 hours of ABA per week since the February following her diagnosis, along with speech therapy, occupational therapy, and physical therapy.  Mia is now expressive and says things like thank you, please, ok mom, iPad, and oh come on.  She is able to label things such as foods, toys, TV, wait, and the list goes on and on.

One of the major things we have been dealing with recently is Mia had a severe diaper rash since May 2012.  In May 2013, we were able to figure out that it was a reaction to the stainless steel crown that was placed during a dental surgery when she had 19 teeth worked on and a frenectomy. We had seen over 18 doctors for this rash and tried every treatment in the book.  No one had a clue.  I went to Autism One and talked to some TACA moms along with many others, and that is where I discovered that heavy metals might be the issue.  Within 12 hours of getting her dental work removed, the rash was gone.  Also, her tonsils and adenoids were severely swollen, and she was getting ready to have them removed.  But three weeks after getting the dental problem fixed, they were the most normal they ever looked.

mia-image2Our goal is recovery, and I feel like we are well on the way. HOPE is something I am thankful for each moment.  Every time I see Mia accomplish something new, that hope gets stronger. I now look forward to seeing what the next day will bring, which is something I was not able to do before.  I always knew there was a person inside of Mia who just didn't know how to come out into our world.  Every day, she is improving as we continue our biomedical journey, and she is blossoming into the child I knew was inside of her.

TACA’s is the first website I visit when I have a question and don’t know what I would do without it, or the advice of the mentors and other parents I have met on this journey. Talking with others who completely understand what you mean without having to share hours worth of details is amazing, and makes you not feel so alone.

We all know having a child will change our lives, but I couldn't have imagined the journey our daughter has put us on, and I wouldn't change a thing.  I hope that Mia's story will one day inspire at least one family.  Perhaps by sharing, we can teach someone an important lesson that will help them on their journey.