Our Appointment at Children's Hospital

I wish I had the energy to write about this more in depth. I think soon I'll get there, and I will. 

I feel like the process we've gone through since Hartley turned 2 is so foreign to people that I try to write using detail so it's a little more clear. 

I guess I'll just come out and say it though with out a lengthy detailed build up. Today a developmental pediatrician at Children's Hospital confirmed what I've suspected for a while now - Hartley is on the autism spectrum. 

When the doctor said it, I cried. I felt like I had stayed so solid and strong throughout our appointment that I was so pissed at myself when I felt that warm water start to roll down my cheek. I felt so dumb. I wasn't shocked so I didn't know why I was crying.

I immediately blurted out, "I'm so sorry. I don't mean to cry. I'm not sad; I'm just really tired."

The doctor, who was absolutely fabulous, chimed right in, "No, you're allowed to cry. It's upsetting to hear, and it's a lot to take in. And it's taken you a long time to get here." 

She had Brian hand me a box of tissues, and in that moment I felt better. I've beat myself up so much this whole process for not being stronger, for not being better. And in that moment to be told it was okay to cry just felt like such relief. Finally someone wasn't saying "it could be worse" or "I'm sure it'll be okay" or telling me how their child does weird shit, too. A specialist at a widely-respected hospital said, "your daughter has autism, and it's okay to cry about it". 

I dried my tears and listened to her elaborate and tell us a little plan of action. I was so blown away by how great this doctor was. She gave us great feedback, tangible advice, and offered to be there for our questions. She also said she wants to see Hartley again in 5/6 months; she wants to track her progress closely. 

The doctor said some things we already knew including that autism nowadays doesn't look at all like what it used to be. Years ago before the definition changed to being a spectrum people envisioned people with autism as sitting rocking in a corner muttering to themselves, completely checked out. Hartley is actually extremely bright - which this doctor confirmed - but she sometimes just lives a bit inside of herself. And with early intervention, the doctor seemed confident (as are we) that this can be lessened or corrected. 

Hartley is inflexible, sensitive, independent and sometimes aloof. However, she is also silly, happy, creative, talented, intelligent, sweet, caring, spirited and beautiful. She certainly is quirky and different but still absolutely perfect. 

Social skills don't come as naturally to Hartley as they do to the rest of the world. And it's hard for me as her mother to watch her struggle with certain things that children her age don't have to struggle with. Yes, it could be far worse, but it's still not fair. She doesn't deserve extra challenges. 

I still have plenty of goals, hopes and dreams for my daughter. The sky is her limit but I do know things will be more challenging, and she likely will face some adversity. I know her timetable for her development, at least for now, will be different. We certainly will always be trying our very best but I've resolved to accept that some things will come in a little more slowly for us. That's okay; the world would be a snooze if everyone were the same.

I'm constantly trying not to worry about her future. I'm always reminding myself to just enjoy now, and I'm still working on that. Who knows, that's probably always going to be my work in progress. 

Lastly, I would like to end by saying I'm not looking to a label to define my daughter. Honestly, there actually was a tiny bit of relief hearing a doctor give her a clinical diagnosis because its made so many things over the past few years of my life make sense. So many things that were challenging about Hartley as an infant and now as a toddler are a little more explained. For some reason, that helps me. It helps me to know that my mother's intuition wasn't wrong. It oddly comforts me to know that I knew things were different first, long before I ever blogged them. However, with all of that said, my child is not a label. She certainly can't be put in a box. She's truly the most unique child I've ever known so seriously watch out, world :) 

Patrick Update

After writing several blogs in a row about the things we're currently going through with Hartley, I felt like I should come on here and talk about the good, everyday stuff going on with the kids. It's been very helpful for me to turn this blog as a healthy outlet as I navigate what is uncharted territory for me. 

Before I start talking about the babes, I did want to come on here and say that I'm sorry that my last post wasn't very optimistic. I'll be honest, I think, in general, I have a pretty positive outlook on life. I also know that in the grand scheme of things, I am very blessed and lucky. I have a hard-working, helpful husband, two healthy kids and a roof over our heads. I know there are families out there going through much tougher things, and we're lucky that our biggest qualms are fretting over when our child's early intervention will start. I wrote my blog on a day where everything came to a head; I was extremely frustrated and had no where else to turn to with that other then my safe writing place. 

I would also like to clarify that I haven't completely lost faith. Also, I think that my daughter is intelligent, gorgeous, sweet, creative and very talented. All of these reports I've referenced will never highlight that so I will state that. She is absolutely wonderful and perfect - her brain just works a little differently than most. It's really as simple as that. 

Also, last little sidebar, so many people have reached out to me privately (and publicly on Facebook, too), and from the very bottom of my heart, thank you all. I think many people shy away from talking about things like this thinking there's some kind of stigma. There shouldn't be, so I appreciate when people are awesome enough to have talked so openly about this with me and extend their kind words and support. A huge shout out to a few girls I went to school with ages ago who work in various school systems who've offered help and support. You ladies have truly found your life's calling and should be very proud of what you do. 

All of those things said, I'd like to update on the kiddos a little. Let's start with Patrick first since that poor guy hasn't had a blog entry in a while! 

Patrick continues to be a very big baby. I keep wondering when he'll slow down. Brian actually told me if he continues on his current trajectory that he will be taller than me when he turns 10 years old, so that's a little scary!! At 13 months old he wears size 6 diapers and either 2T or 3T clothing. I trimmed his bangs a little bit ago but he's already due for another trim. And he has at least 10 teeth. His size, hair and teeth always make strangers assume he's older than he is, which kills me. The irony is that he's still very baby-like. He still has plenty of baby rolls and loves to snuggle. When I feed him a bottle he just melts right into my arms. 

He loves getting kisses and tickles. He's starting to love books. He just graduated from the "I'm not going to let you turn that pages and read to me because I want to eat the book" stage. He loves touch and feel books. He really loves to pet the soft textures. Which has carried over to petting Winnie and petting the animals at the petting zoo! 

He isn't walking yet but he speed crawls, cruises and stands without holding on to things. His big physical milestone that happened shortly after his first birthday - he can climb the stairs! His gross motor skills have come in later than Hartley's (she was an early walker), but I think he actually beat her to the punch on climbing stairs. Though I could be totally wrong - mom brain! 

He says "Mama" and "Dada" completely purposefully. Both of my children say mama a conservative minimum of 50 times a day each. It's crazy. We've also heard him say "bye" and "hi" but definitely not consistently yet. He claps. He loves to bounce and is starting to dance. He has started biting when he gets jealous. It sometimes happens on accident but he's bitten me if I'm holding Hartley and not him. 

He eats an insane amount of food. People have joked about what our grocery bill will look like when's a teen but I swear, it's already starting. We've literally discussed buying a second fridge because we seem to be running out to the store every 2-3 days to load up on milk, fruit and eggs. Unfortunately he doesn't always get what's food and what's not so he truly tries to eat everything. We never had this issue with Hartley so I'm learning what a tough trait this is. He's eaten crayons, marker tips and dog food. He'll lick and gnaw on chalk. It's hard because Hartley loves to use her art supplies and Winnie needs her food on the ground. So he's a bit of a terror when it comes to getting in the girls' way! 

He's still a pretty happy baby but you can see that he's turning into a toddler mood-wise. I think he's been frustrated lately because he still isn't walking so he's kind of climbing the walls a little. He literally climbed on top of the kids' little white table the other day, and you can see he's starting to test his limits. This stage is a little tough honestly but it's inevitable so we'll just embrace the craziness that it is. 

I'll haphazardly throw his favorite foods on here. He likes all food pretty much but his very favorite things are blueberries, strawberries, bananas and veggie straws. He eats pizza, lasagna, chicken nuggets, hotdogs, Mac n cheese, all fruits, green beans, broccoli, yogurt, cheese, cereal, waffles, most dishes or casseroles I make (ego stroke). 

He just started swimming lessons last week. He went with Brian (during that time I take Hartley to ballet). Brian said he did well! No tears. He was a little unsure at first but he warmed up toward the end. 

His current favorite toys are a little sports center baby toy my sister got him for his birthday. He likes to use it to shoot hoops. He's already very interested in sports; he loves watching the older boys play ball at the park. He loves his little people toys - specifically his barn and camper. He loves the trucks he got for his birthday. He pushes them around. And he loves to play peak a boo in this ridiculous box fort I slapped together for the kids. He also loves to make music with his maracas and likes to drum on things.

Okay, this was all a lot to write and honestly, I thought this would be a fun thing to do while I'm not feeling well but it turns out it's making my headache worse! Damn screen - oops! So I will update on Hartley soon but at least the world knows what's up with Patrick. Poor guy is often so easy-going that he doesn't always end up on the blog! But he's doing great and has had a wonderful summer. Maybe the next time I do a Patty post I'll be able to write about first steps! 

Eligible.

Today Hartley was found eligible to receive special education services from Fairfax County Public Schools. They said she has developmental delays in two areas: language and social emotional development. This was no shock to us as last Friday we read her report, and it was not good. In fact, her report hit Brian and I both very hard; it was upsetting and made us wonder if things were worse than we had been thinking. The percentiles they had assigned her were in the lowest quartile, and they had written she had characteristics that indicated she was "very likely" on the autism spectrum. 

The day we received her report, we both cried. It was probably the hardest day to date. Honestly, Hartley's development has stalled out lately and this was that proverbial cherry on top. Brian decided we couldn't just sit around so we took the kids out to dinner at the Cheesecake Factory and then to the playground. For once, it wasn't oppressively hot; it was almost fall-like. I stopped thinking about all the negative crap I'd read hours before, and I got excited for the pumpkin patch. Hartley has actually been carrying around a hand soap that I had bought that's in a pumpkin shaped bottle, and I've been I thinking how picking an actual pumpkin will blow her mind. 

On the playground, she chased other kids. She doesn't entirely know how to engage them so she often tags along behind them. I always wonder if other parent's think it's weird but to me, it's so sweet how hard she's trying. That particular evening she actually stopped in front of another girl, she put her hand on her own chest, and said, "I Hartley!" I was so proud because I knew she was engaging the little girl to play. The girl was there with her big sister so she didn't take much interest in Hartley but luckily, Hartley never minds much when kids don't reciprocate. 

That night I went to bed so exhausted, overwhelmed and sad but I told myself tomorrow I wouldn't wallow. We'd move forward doing our very best, like always. 

We went to the beach, and Hartley had a blast. The first time I carried her out onto the sand she wrapped her sweet little girl arms so tight around my neck and the weight of her little body sank right onto mine. I could smell her shampoo scent lingering in her hair from the bath I gave her the night before. It was the very best hug. And she said clear as a bell, "I happy." She didn't say it the rest of the trip but her smiles and laughter said it all. It felt so good to see that. There's something very difficult about not being able to help your child progress like their peers. Honestly, you feel helpless and heartbroken. You feel like you're failing - even though you're definitely not. The reality is I probably do more for Hartley than most moms do for their kids. You might not know that because she talks funny or sometimes seems spacey or aloof. But on the beach when we left behind percentiles or delays or ASD markers, I felt like the best mom ever because my girl was so happy. That was so refreshing for my soul. 

As we drive home yesterday, reality crept back in. I went to bed anxious about today's meeting. I knew she'd be eligible but the thought if sitting in a room while strangers talked more about Hartley's shortcomings was just so unappealing. It's truly amazing we've made it through as many of these things as we have because you want to know my honest opinion? They fucking suck. At her ITC review last week I learned she's only met 1 of her 6 goals over the last 6 months. Yeah, that's super fun to hear. 

Today's meeting was awful. The ladies had no problem disclosing that Hartley is delayed and that's she's eligible. But god help you if you ask them to shed any light on the plan of action. Nope, that's another meeting for another day. Procedures, blah, no one wants to get sued. I find something so aggravating about these people repeatedly referring to this process as "complex". I guess I'm a stickler for teachers using words properly. This process isn't complex. It's actually very simple, though it varies based on the child. The word they are actually searching for is "inefficient". They take something that is already very stressful for a family, and they draw it out. I'm sure this has something to do with money or politics, probably both. But they condescendingly say to parents, "I'm sorry, we know this process is really complex." And the parent sits across the table thinking, no, I get the process, you've just made it more lengthy and inefficient than it needs to be and therefore, more stressful. 

One woman today, Sally, really got me. Brian met her last time and talked about how he really didn't like her. He said Hartley didn't like her either. I decided to give her the benefit of the doubt - until she interrupted me today. I was talking about my concerns. They had just asked if I had any questions, so I was voicing mine. Then she interrupted me and made a crappy meeting even crappier. 

I was saying this:

I initially was very skeptical about having Hartley in special Ed preschool; I didn't think she would grow in that environment. But as time has passed and I've seen how she struggles in activities with typically developing peers (ballet) and then how she flourished in a special Ed setting at Pathways, I think it's actually a good place for her. I never ever in a million years would think I'd want my child in a special Ed setting but if I'm honest, I don't feel like community preschool is the right fit yet. Hartley requires special attention and extra patience. She has certain difficulties that kids her age just don't have, and I don't want her to go to school, have these difficulties ignored and have people think she's a behavior problem or dumb. She's not. 

As I voiced this in the meeting, Sally apologized for interrupting me as I spoke. She told me how Hartley probably won't benefit from being around a group of children that aren't using much language as it is. She said Hartley would be better off around typically developing children. 

She's a professional, I'm not. But in that moment, I felt crushed. I felt like we'd been thinking this special Ed preschool was the answer; it was going to make the difference. And here I am, no community preschool lined up for fall, though I still don't know if she could hack it there anyway. And I'm being told that putting my slowly developing child around other slowly developing children is just not going to do anything. In that moment, I started losing faith in this system and these people. They are obsessed with their procedures and their business day limits, and they have forgotten the human aspects of this. I bet Sally doesn't even know that I've cried into my pillow wondering what my daughter's future will be like. Because surely if she had, she would've listened to me. 

So later today, maybe I'll be raising a glass to Sally and this situation. But right now, I'm raising a middle finger to her and the horse she rode in on. And to FCPS, because we're not getting started on the right foot. I've yet to see the wow factor here. But I'm hoping and praying it comes later. 

I'm sorry I have no way of concluding on a high note. I have no way of putting a beautiful spin on this. At the end of the day, I'll enjoy my daughter regardless of where she falls in relation to her peers.