Journey of Autism: Our Journey
So April is Autism Awareness month and April 2nd is World Autism Day. I didn't personally did not know either of these things until I became a para to children with autism. What I didn't even know then was my journey of autism had already started. So today on World Autism Day. I am going to walk you through our journey to where we are now and how we got to here.
It all started on September 7th, 2012th. I was joking with my husband that if I was pregnant I would have insurance. At this time it was a lot of talk about health insurance should be for everyone. I currently did not have health insurance and didn't qualify for health insurance. I then joked how I should take a pregnancy test even though I knew there was no way in heck would it be positive on my birthday. Just to say Hey...I found out I was pregnant on my birthday. Two days later on September 9th, my birthday, my husband gave me a pregnancy test as a joke. I laughed and took the pregnancy test on September 11th. GUESS WHAT! The joke was on both of us...when very suddenly two lines appeared. I found out I was due to have a baby, our second, on May 30th, 2013. I was nervous but really excited.
December 30th, 2012, and here I was sitting in the waiting room waiting to find out that I was in deed pregnant with a girl. Everything was like my first pregnancy. No morning sickness, exhausted to no degree, but felt wonderful. So I thought heck...it's a girl. It's a great thing that I kept all of Ginny's clothes so her little sister could wear them. Then...it was announced...IT'S A BOY! I was so overjoyed and excited. I was having a boy for the first time. I couldn't wait to name him and call him mine. Ginny was going to have a little brother. A little brother that she gets to boss around and teach him all fun girl stuff to. A brother who will protect her because he's close to her age. A baby brother.
April 30th, 2013, I went in to a doctor's appointment knowing that I wasn't going to be going home that night. I gave extra snuggles to my daughter knowing her life was going to change. What I personally didn't know was how much her life was going to change that day. At 10:08pm, I heard the doctor as she cut me open, "Well hello there Mr. Miles." Miles was looking straight up at her as soon as she cut me open. She still says she never had a baby do that during c-section. She said he was an amazing little boy. How amazing...time sure did let us know.
Miles, was content sitting alone. Total opposite of his older sister at that age who wanted to be held and cuddled. He rather be alone sitting in his bouncer or in the swing. He smiled at nothing but never at me. I just played it off as "It's the difference between a boy and a girl." He never cooed and barely cried unless you were holding him for a long period. He rather be alone then played with.
9 months old Miles started to walk...or rather run. He started to climb stairs and seemed to be always on the move. He loved bright lights and loved colors. He spoke 20 words before a year old and one of which I was super proud of was yellow.
Then one morning after he turned 18 months...he woke up screaming bloody murder. It was a cry that sent everyone on high alert. Then followed came the hitting, kicking, and biting. Ginny, his big sister, would cry in another part of the house and he would seek her out. He would then clamp his teeth onto her skin and rip. She would scream in so much pain and would try to stay away from her brother. At night and during the day he would be screaming bloody murder in pain, sadness, anger, happiness, excited, anything and everything. He never spoke just screamed all day and night. At night I would hold him as he screamed and arched his back. I started to record the episodes because I just found out I was pregnant and was so tired.
I started work as a Para to students with autism who were in kindergarten to fifth grade. I started to see the similarities between Miles and the kids I worked with. I knew then...that Miles wasn't this little boy who thought the same as I did. No...he was a boy who didn't understand why or what was going t on with his own body. He didn't understand why I didn't understand him anymore. He didn't understand why he could think something but not do it. I knew Miles was autistic. I started to test him through the help of the teacher I was working with. Things became clearer. Took him to the doctors and they sent us on to be tested. The waiting list was TWO YEARS. Yet everything said the sooner of a diagnosis the better chance he had. How could I help him while we waited.
Then, my mom found out about a program, "Infant Toddlers Program". She called them crying because I was scared on how he was going to be when things changed with a new sibling. I was nervous for the baby's life. I was nervous with my daughter on having her life turned upside down. We needed HELP. Our help arrived when they came to meet Miles and then we were assigned an angel. Patti. Patti was a Early Childhood therapist that helped in all areas that Miles needed. She gave us our support we needed and listened to every concern we had of our son. She helped us put an end to the biting. To help with his meltdowns and to help him learn to speak again. By the time Miles aged out of Infant Toddler he was speaking again.
On June 9th, 2016, (Miles' little brother's 1st birthday) we spent all day talking to doctors and therapist. Finding the diagnosis that we needed for our son. The one we knew in our hearts that he had but no one would help us get things we needed. They asked us questions about when he was baby and when I said he was quiet and rather be left alone. They said...that is a big red flag. I was shocked and amazed. My son wasn't a normal baby...he had signs of autism since birth. Then they told us that our son was considered a low-functioning semi-verbal, aggressive autistic. It felt like everything was answered. It wasn't a death sentence.
I knew in my heart that this diagnosis was a way to see into my son. What I didn't know was that our journey is just starting. Miles is now almost four years old. He is an amazing three year old you will ever come to meet. He is now speaking about 100 words clearly and about 150 words total. He is speaking up to 4 words in a sentence and can ask for things. He will make eye contact for the most part unless it's a rough day. He has the biggest smile on his face ever. Miles hasn't bit anyone even his sister since Patti came into our lives. He goes to preschool four days a week half day. He receives OT and speech therapy as well as ABA. Our meltdowns are still rough where he punches, kicks, and throws things at us. Miles is terrified of snow and butterflies. He loves legos and Power rangers. He loves to learn about numbers, letters, and planets. He knows all the planets in the solar system by heart. He can count to 30 and almost to 100. He knows all his letters and most of the sounds the letters makes. He can almost write his name. He came in 2nd place in a race in his age group.
We have our AMAZING days...we have our OMG will this day end days. We have the days where Miles moods change from one second to the next. We have the days where Miles wants to cuddle with you and only you to the days where DO NOT TOUCH him unless you want a massive meltdown.
But, as an autistic mom...I wouldn't have it any other way. I love this journey and I love my tour guide. He is amazing...he is MILES ALTON.