Spoiler alert: My 5 year old daughter is on the spectrum, the autism spectrum. I had never heard of autism until I started researching why my youngest of three cried every time someone, other than her parents, even looked at her. I researched about it more when I noticed she would have the weirdest incidents happen to her, like getting her limbs stuck in her crib or her unwarranted fear of her favorite pink ride-on toy that came out of nowhere. I was scared to say it out loud but I knew something was different about my beautiful baby girl. She was getting close to two years old now and she had not said one word outside of “Dada”. She also had not even begun to hold things and attempt walking. Initially, everyone said, she was just spoiled, but she was so sweet, I just could not believe that. Then everyone said, well she is probably just a bit late, so I allowed more time to pass by but her behavior only seemed to get worse. She hated eye contact, even with her parents, still, the only people she allowed in her presence. She had also picked up a strange behavior of flapping a string in her hand. She would sit and do that for hours, with absolutely no interest in her toys, other children or tv. If we would take the string from her, she would cry and scream until we gave it back or she found another object with similar characteristics. Then she got wiser and would use her fingers, repeatedly flapping them together and staring intently as if she was in a trance. Finally, I convinced her pediatrician that it was time to see a specialist. So off we went on the hour long trip, with our referral, to the Nicklaus Dan Marino’s Children’s Hospital. The trip that became the starting point of our journey.
I still remember that day vividly. It is a somber place even though its full of toys and bright colors. It is a very nice and clean facility, the staff is very professional and thorough. I remember looking at the other disabled kids, starting to consider a world I never fully imagined. I have always considered myself to be a very kind and compassionate person, but not a very patient one. As we waited for our names to be called, I looked at the tired faces of some of the moms in the room and thought of the cruelty some of the disabled children there might face in school. The fears had already start accumulating. Once our name was called, we walked back to the doctors office and began the evaluation. There was toys in the room and the objective was to get our daughter comfortable enough to interact like she does at home with the toys. After about 45 mins, we were given another referral to the county hospital for a CAT scan. This entire process lasted about two months with a total of the 3 visits, including the CAT scan. On our final visit to the Children’s Hospital, we were told no anomalies were found in the scan and she was officially diagnosed with ASD. On the ride home, her dads emotions were on a rollercoaster of denial and hope, while I read up on what ASD and contemplated quietly. It was so much to take in even though this had been building up for so long.
Fast forward about 6 months later, her dad and I decided we would go our separate ways in a very abrupt and vicious way. My daughter and I now lived with my mother, which was quite a change for her since she, of course, did not get along with anyone else. Her father stayed home with her throughout the day while I worked my 9-5. At nights, I was with her, while he worked. Well now, we needed a new plan, and that plan was daycare. I got a few days off work to find one and it took every moment, as most of the nice daycares were not accepting children with ASD. Finally, I found one willing to accept her, a day before I was expected back to work. I went to the facility and it did not look the nicest and it was really small, but it was clean and I was desperate. The owner of the facility advised me that they had another small boy there with ASD so it would be no problem. She was not potty trained and she assured me they would work with her, that I should not worry. The next day, I sat with her an hour in the room before I made it clear that I was leaving. She chased after me as I headed towards the door but the owner handed her a toy to try and distract her a bit. She blinked and I was standing on the other side of a now closed door waving bye in the window. I could hear her screaming as I forced myself to walk down the hall feeling like the worse mother. That day at work crept by like it was the day before vacation. The owner of the school sent me pictures which helped a bit, she did not cry the entire day. It took about a month before she did not cry when I dropped her off. Now it was time to get my 3 and a ½ year old enrolled in school.
There are specialized schools for ASD children but they are expensive and she was too young for a scholarship. So public school was my only option. I went through another set of appointments and tests through a program called Headstart that I a found out through a coworker who was also the parent of a child with ASD. What a huge help that was! I got her enrolled in a great school with some awesome teachers that made an immediate bond with my daughter. She was well loved and she began to blossom. She began making friends with kids from all grades, making eye contact with everyone with a big, beautiful smile. I advocated along with her teacher to get additional speech and language therapy in school since I could not make it to an outpatient facility. That has worked wonders as well. The 5 year old that I have today is almost out of ESE classes. She loves teddy bears, her ballet classes, has tons of friends and gives the best advice. Two things I have learned as I continue on this journey with her is time heals all and love is the answer.