After an hour and a half of a social worker asking me what seemed like a thousand questions, I looked over at my coffee tumbler. So depressingly close to empty. It was a coffee tumbler my mom got me as part of my birthday gift this year; it's covered in red and pink hearts. Ever since having Hartley, I look at all things with hearts a different way. They remind me of my beautiful, sassy little blue-eyed blonde girl.
Hartley had rejoined the room. She had been in another room with Brian, a psychologist and a speech therapist. They were assessing her - an assessment that will be used to determine if she's eligible to attend special ed preschool in the fall. I hated that I wasn't in the room for her assessment but someone had to answer ever single question about Hartley and who better than myself.
I wanted to pick the brains of the people who assessed Hartley though. I wanted to have been there so I could ask a laundry list of questions.
As the social worker was about to give us permission to leave, I chimed in. I told her we were supposed to have a parent conference so we could learn a little about what they thought. She told me she could send the psychologist in to speak with me.
The psychologist was a very nice lady with a calming aura about her. Hartley had warned up to her quickly.
She sat across from me at the table and told me lots of information, well articulated and very detailed.
I'm going to rattle off what she said. She said Hartley's play skills are delayed. She only interacted with the people in the room if she needed help opening something. As far as Hartley's language skills - Hartley uses the very bare minimum amount of language needed to express herself. She discovered that Hartley uses the word "stuck" instead of saying "please help me". (something we have always thought of as very cute actually). She didn't attempt to engage anyone to play. Her ability to respond to her name wasn't as consistent as it should be for a child her age. She said other 2.5 year olds don't respond to their names 100 percent of the time but Hartley did less than a typically developing child. Hartley's eye contact was fleeting. Hartley spun. Hartley wasn't easily redirected; apparently most children her age are more easily adaptable. They noticed Hartley was echolailic.
Now, I know this all sounds negative but she wasn't bashing on Hartley. She was describing to us what Hartley was doing and how it "measured up". She did also mention to us that Hartley seemed very bright and showed no difficulty in learning things. She said Hartley actually picked up how new things worked very quickly.
Brian said as far as how Hartley performed at her assessment, that it was very true to how she is at home. They did not catch her on a bad day or anything. I made sure to ask him this because I wasn't there to see.
The psychologist said she'd already explained it to Brian but she'd explain it to me so I could understand: Hartley is developing "atypically" as opposed to "delayed". The example we talked about is how Patrick at 12 months can hold eye contact or engage during peekaboo better than Hartley can. This doesn't mean Hartley is functioning at below a 12 month old level but rather, she's developing in a different or "atypical" way.
Then she said out loud what has been on my mind for probably about a year now:
"Has anyone talked to you about the possibility of Autism?"
That is a moment I can't quite erase. While my world didn't exactly come crashing down and it certainly wasn't out of left field, someone finally said it out loud.
"No one has but it's been on my radar for some time."
This wasn't a lie. I was fully aware that things she was doing were signs, and I began to truly wonder at her second birthday. When people would say to me, "don't worry, she'll catch up", I'd feel a little knot in my stomach. I knew they all meant well, and I couldn't tell them but my true worry was this wasn't something Hartley would "catch up" from.
The psychologist elaborated. She told me that they don't diagnose Autism Spectrum Disorder but Hartley showed characteristics that indicated it. She said they had "significant concern" (I chose to remember the exact words) with Hartley's development. She said if Hartley doesn't qualify for special Ed under the label "developmental delay" (though we have no reason to believe she won't), she could qualify under the Autism label. She said Hartley would "greatly benefit from intervention" though it was not her decision alone to make.
In that moment, I realized it was time to follow up with Children's Hospital, who my regular pedi had referred me to. They never called me to schedule like they were supposed to and I left it go because I thought maybe they'd say nothing was wrong at her assessment. I realized this isn't some thought I can keep brushing off because it makes me a little uncomfortable.
We left the building, and if it were legal I would've just curled up in a ball with Hartley in her car seat. In that moment I just wanted to wrap myself around her to somehow feel like I was shielding her from everything unpleasant.
Brian described their time to me in the car. He really described it as being a good day for Hartley. She seemed to mainly enjoy herself and she performed well.
His mood soured as we got home. I asked him if he wanted to talk but he snapped at me that he was just hungry. He said maybe she doesn't have ASD. And who knows, that's still a possibility, I guess.
The remainder of the day I felt kind of crappy. No I wasn't crying all day or feeling a sense of impending doom, but I was sad. I thought a lot about Hartley's future. I thought about how, even now, kids notice that she's different, and how that might get worse in the future. I thought about how it killed me that I couldn't protect her from everything, and I couldn't fix this for her. I thought about all of my big picture dreams for her, and how come hell or high water, I'm going to get her there.
At the end of the night my mind was spent. My heart was hurting. I decided to take some NyQuil, and be a more positive me in the morning.
On Friday, we woke to a new day and a new perspective. I ordered a book online so I can learn and grow myself. The kids and I headed to a new park with some new friends we met though MOMS club. And I watched Hartley play very happily. I felt so much better.
I have zero definite answers but my mentality is to savor every day. She's such a blessing, and I love her so much. We'll have great days, good days and bad days - and we'll get wherever we're destined to be.
I was hesitant to come online and share this. I think soon my writing therapy with switch over to a journal format. I know it's a little selfish of me to come on here because it's Hartley's life and story, and not mine. But I do plan on getting up on my soapbox from time to time. I do plan on preaching acceptance to the world.
As my beautiful Hartley would say:
SEE YA SOON! CHEERS!
Today I woke up a few minutes before 6, throat scratchy, nose sniffly. The past couple weeks here have been marked by everyone sneezing and having runny noses. My body has managed to continue to fight it off pretty well. I'll feel it starting to conquer me but I get a decent sleep and wake up okay.
Today my throat - and body - just needed a nice tall cup of coffee. Before the kids were up I sipped my coffee and thought about how big today was.
It's funny, I'm sure a lot of parents of typically developing children don't even know what the Infant and Toddler Connection even is. And for me, Hartley "graduating" from it is the first graduation she'll ever have.
The Infant Toddler Connection is an organization through the county that provides aide (i.e. Speech/occupational/physical therapy) at low or no cost to families with children in need. I learned of this organization back in February when both of my children were referred to it by their pediatrician.
Patrick was assessed, and because of some tricky rounding, he qualified. We were given the option for him to receive physical therapy services; however, we were told that his gross motor skills were delayed purely due to his very large size (at this time he was literally 100th percentile). We were told he would still develop all of his gross motor skills (so no need to worry) but it was going to take him longer because he had an extraordinary amount of weight to support unlike his little baby peers. We decided to go for it because we were already doing it with Hartley so why not, right?
Hartley presented more worrisome delays than Patrick. I believe it was something like more than 20 percent (maybe 25?) delays in 6 areas of her development. She was eligible for services, and it was much more of a no brainer. At that time, she was freshly 2, and something encouraging we heard a lot was that at that point, there's a very wide spectrum of what is "normal".
They wrote up an assessment of where she was. Then they wrote up a plan for her with a list of goals, some short term, some more long term. In all honestly, I'm not sure how many goals she's met. I know she's drastically improved on responding to her name. It certainly isn't 100 percent, but back in February it was pretty damn close to zero percent. She is improving with making choices. She has greatly improved in answering yes or no questions. None of this is 100 percent of the time but it's much, much better than it was. However, as she develops her peers do too so we're not exactly sure where she falls now.
That's where tomorrow comes into play. Some experts - a speech therapist and a psychologist - will assess her and tell us their thoughts. This will also determine if she is eligible to receive special Ed services.
The Infant Toddler Connection is an absolutely incredible organization; I can't say enough good things. It's a group of people who have found their lives' calling by working with these munchkins who just need some extra help. They are so incredibly sensitive, supportive, and professional. And as a mother whose children have needed some extra help, I'm so grateful for these people and this service. And Go, Fairfax County, for what you do!
Now at 36 months/3 years old, if children still are in need of extra help, they transition from ITC to Fairfax County Public Schools. FCPS is responsible for ensuring these preschoolers get what they need before they are old enough for kindergarten. Pretty cool, right?
Well, that's where we are tomorrow: Hartley is being assessed to determine her eligibility to attend this preschool. She basically qualifies if she shows to have 25% or greater deficency in 2 or more areas of development. Now, as her mom, I'm not 100 percent certain she'll qualify, mainly because I'm so proud of the huge strides that have been made in 6 months. But I am also aware that my child is developing differently than her typically developing peers.
However, I digress. I gave you all of that back ground for a reason, I promise! It's really to explain what ITC is because today Hartley graduates from ITC. I'm surprised she's graduating honestly. But I think our little team is fairly confident that Hartley will be transitioning over to FCPS. She was invited to Pathways to prepare for this transition.
So today my baby graduated ITC, and while many parents probably see that on Facebook and say "WTF are people celebrating now?" Because I realize that some people think we, as a society, over celebrate with things like participation trophies and all that jazz. BUT the group of kids we celebrated today do deserve this "extra" celebration. They are children and parents working really hard before school even starts. And quite frankly, these are children that can only gain from an extra day of celebrating them; they truly deserve the confidence boost!!
My daughter is 2.5 years old, and I'm very proud of the fact that she already has two certificates with her name on them. We survived ballet, and she truly has rocked ITC!
The ceremony was held at a park in Fairfax. It was hot and sweaty but very fun. They really tailored the event to the little graduates. Hartley loved playing at the park and munching on goldfish and mini cupcakes. She was shy about getting her certificate but Brian carried his little princess up to get it and there were no tears. Unless you count a couple proud mom tears.
Congrats, Hartley Glenn! You are so special, quirky, smart, funny & beautiful. I know this will be the first of many graduation ceremonies - and we will be cheering for you at every single one!
I just posted an ode to Patrick as he turns one. Believe it or not that was my second attempt at writing a birthday post I liked. I wrote two, not being wonderfully impressed with either so I decided not to post until I wrote a better one. Then I realized it just wasn't going to be like the way I wrote Hartley's baby updates.
I realize that my blog often chronicles more of Hartley than Patrick. Maybe it's taboo and I shouldn't say it but she's my more complicated child. I don't mean that in a better or worse type of way. Patrick has just been easy. He's a chill baby that doesn't mind me scrapping whatever's in the bottom of my purse and handing it to him in the checkout line as a toy. Seriously, you can say anything to that kid, and he laughs and smiles. In some ways it makes him hard to write about. How many times can I say my baby boy is jovial, easy-going and very, very large? I'd write down all of his likes but he likes pretty much everything. It's kind of crazy.
And like I said, it's not for better or worse, but Hartley is my child who keeps me on my toes. She keeps me constantly learning and constantly growing. And she had me well versed in "how to keep an infant alive and relatively happy" before Patrick even joined our family.
I write this from my bathtub. Yes, I'm a weirdo who write blogs in her tub. Quite frankly, it's double therapy for me and I recommend to all moms out there :)
I've entered this week a little nervous. I push my feelings deep, deep down inside though. The reason being is my job is keep our little family going. I try to stay cool and calm for my kids.
The other day we were outside and a snake that was close to 3 feet long came slithering out. It was big and scary. And I was outside with my kids and my goddaughters, and I just calmly hustled everyone to come back in the front yard to play. I herded them like cattle to get them back to the bubbles and chalk on our front driveway. Honestly, I was freaking out on the inside. Later, Brian told me how cool I was about it, even though he knows snakes scare the shit out of me. But I had to be cool. I didn't want the kids to be scared. I wanted them to feel fine and safe.
I can actually give myself a mom pat on the back because even though it's early in motherhood, I'm actually really good at this. It means holding in tears and letting my stress get the best of me starting at 8:01 pm when everyone is tucked in their little cribs, but it's the best thing for them, I know.
As we start this week we have all Hartley things on the docket: speech therapy, ITC graduation (crazy, I know, but they are pretty certain she's going to move over to preschool), her assessments, and parent conference. And by the end of the week, we're going to have a clearer picture of what's going on. That as a whole brings me peace but it also does bring a hair of anxiety.
Lately I've started to notice her playmates noticing she's a little different, a little quirky. That's been kind of hard to watch. I'm certainly not putting examples on here but I've told her little peers things like "Hartley's shy" or "Hartley's just being silly". The way she talks is different so it's very normal that kids notice that.
I've been "reassured" that Hartley should be found eligible for special Ed preschool. I get how that sentence sounds funny to some. Maybe you're thinking, "why would you want your child to be in special Ed?" It's an inexplicable feeling that when I saw my child in her pathways setting, I felt it was the appropriate setting for her. I want Hartley to be thoroughly and properly evaluated though so we can make sure she is in the exact right setting for her to grow and flourish. The label of this setting is not my concern.
At the end of Pathways, I felt Hartley had blossomed a lot. Her language and focus improved. And over the past few weeks, she loves "playing with friends". I love hearing her talk about "friends". She spouts off kids names in her Hartley way. She says the name in a tone that denotes to me that it's a question. And I know that's Hartley's way of asking if she can see that friend. It's been amazing to see her interact with other kids and really enjoy it. This is very recent for her (like a month ago she really didn't seem to care much about being around other children).
Hartley also really enjoyed school. So Brian and I discussed how whether or not she's found eligible, we'll try to get her into some sort of preschool. That fact that she asks us for "preschool?" is thrilling to us. We want to encourage that love for school, and we're both ecstatic that it seems there already!!
Anyway, I'm probably going to blog this week again. The truth is, this outlet seems like the healthiest way. A few weeks ago I avoided retreating to my blog for fear of being negative - then I binged ate Chinese food and drank a bottle of wine. I'm fairly certain prattling off my nonsense on here is the better option ;)
I'll never forget the cold December day that I lugged Hartley in her footie pajamas to Target. I had been feeling an overwhelming exhaustion for days; it was an exhaustion I'd only experienced once before. Though it was cold, I felt a little sweaty and my stomach kept turning. I knew I couldn't be pregnant. But it was December 5th, and my last period was in October. If I were "normal", I would've been two weeks late.
I usually text Brian the most mundane updates throughout my day but I couldn't share with him that i'd just placed a few bottles of wine alongside a pregnancy test on the checkout conveyer belt. I knew he'd tell me I was ridiculous and had essentially set a ten dollar bill on fire.
But what did it hurt? Like I said, I'd only felt this way once before, and it didn't hurt to rule it out.
I got home. I plopped my not quite 10 month old baby in her highchair. I busied her with a pile of puffs and retreated to the powder room.
I laughed at myself a little as I peeled the foil off. I'm so stupid. This is so stupid. It's impossible.
But sure enough, as soon as I used the test, a half second after the control line popped up - the test line unmistakably filled in pink.
I couldn't even process what had just happened. I'm quite sure I said, "What the?!?!" out loud.
I called Brian, and I gave him the shock of his life. He kept tripping over his words, alternating asking me "what?" and "how?"
I often look back on how Patrick came to be and think about how he was the thing in this world that I never knew how much I needed until he got here. God knew. It's hokie but I truly believe he had a plan for us. Patrick was so meant to be a part of our family. He was so meant to be on this earth. He is a wonderful miracle. How lucky we are to have TWO miracle babies.
I always worried how I would juggle two young children. And truth be told, I sometimes suck at it, and I struggle. It's actually very hard to try to divide my attention evenly and feel like I'm doing all I can for both of them all the time.
I worried how I would be as a boy mom. If you know me you know I couldn't give two shits about sports. I know, sacrilege, right? But I just don't. So I worried if it meant that I'd have nothing in common with Patrick. Spoiler alert: it definitely didn't. I've actually surprised myself with how excited I am to learn about dinosaurs and trucks with him - and I guess maybe even some sports stuff, too ;)
But when Patrick entered this world, I actually felt it. That instantaneous love they tell you about. I honestly didn't feel that right away with Hartley. But Patrick, the very first time I held him was one of the most euphoric and wonderful moments of my life.
He has been such a joyful, sweet baby. His disposition is absolutely amazing. He's easy going and happy. He loves to laugh, be silly and explore. He adores and looks up to Hartley, even though she bosses him around something fierce.
He's bright; you can always see the wheels turning. He's ridiculously strong. I'm talking you have to have some serious skills and muscles to wrangle that child. He's sweet. When he can stop moving for a few seconds, he's quick to cuddle. He's a social guy; he loves people, especially other babies.
His perfect red hair and giant baby body get all sorts of compliments from strangers.
I often feel bad because I don't come on here and chronicle his babyhood the same as I did with Hartley. I kind of wish I did but the truth is, whenever I do have time to myself, I'm usually too pooped to prattle off about what toys or books he's loving. I feel lucky that I've gotten to live everyday of it with him though. I've gotten to be there for all of it; I just haven't written it down. Hopefully he'll forgive me of that.
Patrick Frank,
You are the most perfect little boy, far better than I could've ever imagined. I hope you keep your amazing attitude and sweet personality always. With it, I know you will go very far and do amazing things. I love you so much, and I thank God for bringing you into my life. You will always be my very best surprise.
Editor's note: I wrote this on his birthday but I didn't love it so I postponed posting hoping my writing vibes would get better. They didn't. And we've since been to the dr and learned a Patrick stat to include. He's 30 lbs, 5 ounces - bigger than Hartley. He is 99.97 percentile for both height and weight. Brian's NBA dreams are still alive ;)
