Our new adventure with Autism.

I’m not sure if I’ve mentioned it before but PJ has a speech delay. She’s always been hesitant to speak or communicate in ways other than grunting/screeching and pointing.

I started noticing the delay when she was about 18 months old and still hadn’t said,”Mama” on more than one occasion. Whenever I tried to share my concerns everyone brushed them off and said things like, “Kids develop at different speeds/So and so didn’t start talking until they were 5/You’re just being paranoid she’s fine.” But deep in the pit of my stomach I knew that things weren’t fine.

When PJ started school last year I always asked the teachers how she was doing and I was constantly being told that she didn’t really interact with the other kids or that she would immerse herself in her own activities and not participate. They thought she might have an ear problem so we started taking her to appointments. We had a few meetings with the school’s psychologist but she never suggested anything more than what we were already doing.

After months of appointments of hearing tests and figuring out that her hearing was in fact fine we were directed to see a pediatric neurologist. She prescribed an EEG which took us MONTHS to finally get because PJ kept getting sick whenever we had it scheduled–after 5 months we finally got it done and everything was normal. The neurologist also suggested we start seeing a speech therapist to see what we can do. And so, PJ started seeing a speech therapist twice a week for 50 minute sessions.

After only two months of therapy PJ was able to say more than one syllable words. She started asking us for things as opposed to grabbing us by the hand and taking us to whatever she wanted. She was able to put tiny phrases together like “Momma come!” or my favorite at the time “Shake, rattle, roll!”

Don’t get me wrong, PJ knew things. She knew her alphabet. She knew her numbers. She knew the difference between her vowels and her consonants. PJ knew her animals and what noises they made. Everyone, including the doctors and teachers, said PJ was brilliant and knew more than most two and a half year olds but she just didn’t know what to DO with that information.

When we took PJ to Miami, coincidentally right after she turned three, she had an intense mental growth spurt. She was able to answer “yes” or “no” to our questions and she was able to more or less communicate with her cousins. She would talk to us about things she saw or specifically ask us for things like “Mom, we go to cousin house?” I must’ve cried so much on our trip just seeing this new light in her eyes, the excitement of being able to communicate. But she still had her little quirks of isolating herself, not answering to her name whenever she was too immersed in something, or even organizing toys by size or color.

Fast forward to last week when we had a meeting with a new pediatric neurologist. This time we were (unknowingly) meeting with the head of the department at our hospital. She spent almost two hours with us interviewing us and observing PJ play in the corner of the office. For the first time someone asked us, “Have you ever thought that your daughter could be on the spectrum?” I wanted to break down crying because finally someone wasn’t ignoring it. I had spent months trying to get someone to acknowledge that it was a possibility but every therapist and doctor said we hadn’t crossed that bridge yet.

To sum up the meeting she recommended we start taking PJ to meet with an occupational therapist as well as her speech therapy. She was calm and patient, she explained that PJ obviously isn’t on the more extreme side of the spectrum (whatever that means) but that she just had things she needed help with. She assured us that PJ would lead a normal life; which kinda made me roll my eyes because obviously this isn’t a death sentence but I guess not every parent sees it that way.

However I will say that this couldn’t have come at a more stressful time. Trying to set up an appointment with a therapist in the middle of Uruguayan summer is next to impossible since everyone is on vacation. We still don’t know PJs school schedule for the upcoming year so we can’t really schedule a set therapy schedule until the end of February. And then of course we have the new baby coming. We’re going to do everything in our power to get PJ the help she needs but it’s not going to be, for lack of a better word, easy.

Right now I just ask for positive thoughts and prayers as we navigate through this new parenting journey. That God place us where he wants us, with therapists that will help her, with teachers that will be understanding, and as always continue to bless us with people that love and care for our family.