My child is really very smart. I mean, of course I think that, right? I'm the mom. I often wonder if parents, grandparents or any close family member really knows if their kids are dumb or ugly? You all know what I'm talking about. You think your child is the most beautiful, smartest child you've ever encountered (you're supposed to). It's really easy for family to focus on the wonderful qualities of a new and growing child, we love to brag to anyone who will hold still about all the amazing and brilliant things our kids can do. We annoy our friends and loved ones (and perfect strangers) with the most gripping details about who made a stinky, who loves green beans, who just said "mamma" and boast proudly about how our little genius is clearly a future brain surgeon because look at how well she colors! But sometimes it can be harder for us to really, truly see our children.We are ready to over praise and we are even more ready to explain away faults or problems. Developmental issues can, especially in younger children, often be dismissed with an easy "Every child develops at her own pace," or troublesome behaviors are often shrouded in a, "He's all boy, isn't he?!". So what happens when there really is something wrong? I think, as a mother, you just know. You may not always be able to completely articulate what you think the problem is, and you may not voice your concern (because moms are worriers, aren't we?), but deep down, you have have this radar that just sort of "blips" when something isn't right. 
And Lorelai, she's smart, but it's the kind of smart that got my mom radar going. She was the baby who would color code all her toys, or alphabetize them. She would line up all her crayons before coloring with them. She would color code and count her Froot Loops before she'd eat them. (In hindsight it all seems very textbook, but at the time it was just sort of ... weird.) The first time she spoke to us she was about 14 months old and she looked at my mother and counted to ten. Seriously. But while everyone was amazed that she was counting (which, honestly, was really cool), it was also disconcerting that she'd been silent for so long. She waited what seemed like a long time to walk. She wouldn't sleep through the night and often had horrible night terrors. She threw violent tantrums that were dangerous to herself and those around her... and list went on. So many things just weren't adding up. We kept explaining things away, but the radar was blipping all along.
So, about a year and a half ago (when she was 2), I got a really stellar job at a very prestigious law firm replacing this amazing paralegal who was going off to law school. Part of that process was to get Lorelai enrolled in daycare (because apparently most law firms frown on bringing toddlers to work, no matter how smart and probably great at filing they are). So, as any parent who has ever tried to get a kid into daycare knows, we had to go to the pediatrician to get a check up and shot records and blah blah blah. Part of the "check up" process is a "developmental milestones test". Basically, depending on the age of the child, they pull out this standardized checklist and have your kid go through each item until you hit three "no's". So, can your kid stand on one foot, recognize the letter A, see that word across the room, hear the sound of this buzzer, or whatever. Again, the tests are age-appropriate and your doctor is looking to see if your kid can get through all of the metrics that are determined "normal" for his age before you hit all three "no's". When we used to do these things with my son I thought they were silly. It never actually occurred to me that kids didn't do well on these things because what they were asking for each time seemed so basic and so in line with how any kid develops that I couldn't see the point. Enter Lorelai, stage left. Jedi Dad took her in for this check up and she didn't do very well on the ones for her age at all (which at two is mostly basic language and motor skills). So the doc decides to fast forward a few pages to the test for kids that are older and Lorelai is sailing through it. My husband, of course, does not understand the significance of any of this (neither did I for a really long time) and leaves with the proper day care forms and a referral for a Speech and Language evaluation and a Hearing test. Jedi Dad thought this was absurd. We knew she didn't have a hearing problem and how many two year old's DON'T have speech issues, they are all LEARNING to talk aren't they?! I, however, knew there must be more to it. ((blip))
When the doctor suggested we get these evaluations, Jedi Dad agreed to the evals but wrote off any concern immediately. I however, decided to do some homework. Homework is my way. That's how I process the world. I research it and study it and try to find words for it. Sometimes this is cumbersome but usually this works greatly to my advantage. One thing I will say to any parent ever... if you are worried about your children, trust your gut and DO YOUR HOMEWORK. There are a million resources at your fingertips. Use them. Talk to your Doctors. Push for answers. You are your child's best advocate. That is the reason you are her parent.
I also had another seed that had been planted in my brain, unintentionally. When we talk about "awareness" I often wonder if we know what the impact of that is. The awesome paralegal that I was replacing has two adopted siblings that are both on the spectrum. I know this because she has the coolest tattoo on the inside of her left forearm of four brightly colored puzzle pieces. I was drawn to this tattoo within minutes of meeting her and finally asked her about it. Her story just stuck with me. So when we started this process I had that image floating around in the back of my mind ((blip)). I know when she got the tattoo she probably had no idea that someday I'd see it and it would make me aware, but I'm so glad it did.
When we took Lor to her first evaluation, the Speech evaluation, they started asking us a lot of questions about Lorelai and her growth and development. We were answering them honestly, and they seemed innocent enough, but inside all I could hear was ((blip - blip - blip)). They scheduled us an appointment to come back and go over the results and create a therapy plan and the dots on the radar screen were starting to take shape in my head. I was up all night researching and studying and I knew in my heart, and in my stomach, that we were dealing with something big here. The next morning I called the Speech therapist back and I said, "You think she's autistic, don't you?" Quiet. "It's ok. I can handle it. I just want to know what you think."
After a long pause she said, "We aren't really qualified to give you a diagnosis, that's not what we do. But yes, that's certainly what it looks like to us and we think you should consider getting a Psychological evaluation."
I hung up and sat in my car in silence, waiting to go into work. I allowed myself one moment of sadness. One moment of quiet tears and then I locked it down. I didn't know very much at all about what we were facing but I did know that my only real choice was to be strong and push for answers. One thing I'd kept reading over and over was that early intervention was really key. I voiced my concerns to my family members. The responses ranged from, "She's fine, she's just a little behind, don't get worried over nothing" (my Dad and Jedi Dad) to "I've often wondered if there wasn't something like that going on, but I had no idea how to bring it up" (my Mom and my Aunt - see, mom radar).
But I pushed and so we took her to a Psych eval. That doctor spent about an hour with Lorelai and me and decided "There's no way she's on the spectrum. She's a little behind but she'll catch up. But, if you're still worried in a year, by all means get another eval done" and sent us on our way. She was a very good doctor that came very highly recommended, and my Husband was thrilled to be right and thrilled to have someone who finally confirmed that I was over reacting and that his baby girl was going to be fine. And how could I blame him?! This was supposed to be great news and who am I to be a Debbie Downer? So how do you keep pushing, as a mom, knowing that something is wrong? The doctor is saying it's fine, and your family is relieved and ready to call it a done deal. Again, I will reiterate, TRUST. YOUR. GUT. I heard the doctor, I heard my family, I heard my husband, but I also heard ((blip. blip. blip. BLIP. BLIP.)).
For a while, I kept my concerns mostly to myself. I did mention that I was still worried and that it didn't quite feel like a relief. We've all had those moments. You're sick, you go to your doctor and she says you're fine and you are simultaneously glad she found nothing wrong but also worried because you are still feeling sick... it was like that. You don't want to be a hypochondriac, but you're worried. Well, I stayed strong and I tried to let it go, but I was carrying this constant ((blip. blip. BLIP. BLIP.)) around with me. I spent a week in the hospital (stress ulcers, I know, big surprise, right?!) and between that week out and all the missed work from all the evaluations, I lost my "dream" job. Turned out I didn't have time for it anyway, we were about to get really busy. In hindsight I think the only reasons I got that job were 1) so I would need to take Lorelai for the milestones test she failed and 2) so I would meet that other paralegal and hear her story.
So for a year I took Lorelai to therapy. We started with Speech. Then it was Speech and Language. Then it was Physical Therapy. Then it was Occupational Therapy. Hours and hours each week we spent helping her "catch up". And in a lot of ways we were making real progress. Our therapists are amazing. I truly believe that they are angels and that God put them on Earth for these children. But with all the progress it was still clear to me that we weren't really closing any gaps. She was still delayed, still behind. And her behavioral issues were coming full circle. I started seeing these violent tantrums that I hadn't seen in months, and she was getting harder and harder to deal with. And clingy... she was getting SO attached to me that I couldn't do ANYTHING. And all the while... ((blip. blip. blip. blip)). I finally begged our therapists for a referral to a behavior therapist (or a padded room) and was delighted when they said they were bringing someone on board. After probably inappropriately flirting with everyone in the office to be one of her first appointments, I finally got the chance to meet Dr. Awesome.
She came to our house, met us on our own terms, and said she could help. She was funny, smart, genuine, likable, and concerned. She also, after several meetings and a bit of discussion, told me that I wasn't crazy. I think her exact words were, after explaining that of course we would need official testing, "If she's not on the spectrum, I'll give you my house." FINALLY!!! Someone who actually heard me, who genuinely believed me, and who could do something to really help me. She saved us. Not just by validating my concerns (although that goes a LONG way), but by caring enough about us, about Lorelai, to help me find the truth and point us in the right direction for all the resources that Lorelai really qualifies for. She's helped open so many doors for us. (Just wait until I finish my blog on the testing and the IEP process... hahaha.) She's helped us navigate our way through a really confusing process and has been an amazing guide, connecting us with endless resources and other professionals, expanding our network of support all the time. I'm so grateful to her, and I'm so grateful to our speech therapists for seeing how great she is and connecting us to her.
So what do I say to you as a mother or father??? TRUST. YOUR. GUT. If something feels off, get it checked out. If an answer doesn't sit right with you, get a second opinion. Never let someone make you feel stupid. Better to over react and get your kids everything they need than to under react and let them fall through the gaping cracks in a crowded system. You are their voice. For many parents of autistic children, you are truly their ONLY voice. Surround yourself with people who love and support you. And never give up. You'll never be sorry for doing too much for your kids.
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