Hannah’s Second IFSP

On January 30, 2016January 30, 2016 By LeeIn HannahLeave a comment

Two weeks ago Hannah’s two Birth to Three teachers, Maureen and Anne, came over to write Hannah’s new IFSP. It wasn’t as bad as I was making it in my head (see previous post). I knew they were going to ask us for a new goal for Hannah and the only idea I kept going back to throughout the day was for Hannah to crawl. It’s a goal that’s farther out than the typical 6 month range but I don’t see any reason not to dream big.

There will be quite a few steps to reach this goal. First, Hannah will need to learn to go from sitting to laying down without toppling to the side, doing a ninja roll, and looking around to see if we noticed. We’ll also need to work on her arm strength, which means more tummy time even though she loves sitting. The hope is that she’ll eventually start to pull her knees to her body while she’s pushing up with her arms. I can’t remember the rest of the steps but I know the team will remind me as we go along.

Aside from the main goal, Maureen listed other developments that we should be working on:

For playtime, we want to see Hannah banging toys together or against something else (the floor, highchair). We know she can grab toys with either hand, as well as move things between her hands, but now we want to see her reach across her body to grab something. This means strategic toy placement and being active participants in her playtime as opposed to solo playtime in an activity gym or bouncer. We should also give her multiple toy options and let her choose the one she wants to play with.

In the social/communication department we want to see Hannah continuing to give us pre-communication signals. For example, if we’re bouncing her and we stop, Hannah will keep bouncing to communicate that she wants it to continue. I think Hannah already does a great job of communicating when she’s done with her bottle (swats it away from her face), wants more baby food (reaches for container and whines), or wants more tickles (grabs your hand and pulls it to her).

I asked about Speech Therapy but Maureen doesn’t think it’s necessary at this time because Hannah is vocal and makes B, D, and M sounds. What we can do to help her speech is have conversations with Hannah so she can learn about back and forth communication and responding. I think most of us do this anyway but we’ll make sure it’s a regular occurrence. We’re going to start basic sign language like “more” and “eat,” which Maureen will discuss with the daycare teachers next week. Hopefully they’ll be on board with it since they see Hannah 40+ hours a week and have the most opportunity to practice with her.

In the two weeks since the meeting we’ve also moved Hannah out of the baby tub. The kid loves it! She’s particularly interested in the drain of all things. Since Banana’s focused on something lower than her I’ve been having a hell of a time trying to wash her hair. I even bought a little visor off of Amazon but it doesn’t make a water tight seal around her head. She doesn’t seem to mind cups of water streaming into her face but she looks a little rough when the bath is over…

wet doggie.jpg

Why I Need to Stop Comparing

On January 11, 2016January 11, 2016 By LeeIn Hannah2 Comments

Hannah Banana is due for a revised goal setting meeting with Birth to Three. Our last one was for her to be able to sit unassisted, which she has been doing since mid-December. I’m hesitant to rewrite her IFSP (Individual Family Service Plan) because it takes away from a therapy appointment and I don’t want to think about what she’s not doing.

Most days I don’t even think about Hannah’s delays because doing her exercises is a normal part of our routine now. There are some days, though, that it’s so glaringly obvious that she’s behind her peers. Like when someone asks us how old Hannah is and says she must be walking by now…or at least crawling… Or when I made the mistake of asking a daycare dad how old is just-starting-to-walk daughter is. When he said she’s 9 months old I felt a small (ok fine, it was big) twinge of envy.

Besides sitting on her own, Hannah doesn’t seem interested in much other physical progression and her last few PT appointments have been less than stellar because she was either too hungry/tired to participate, struggling with some tummy issues, or full on passed out and snoring like a pig. At last week’s home appointment she was tired and hungry and sucking on her pacifier like it was a hooked up to an all you can drink milk machine. She had no interest in being on her belly and just wanted to sit and stare at her toys.

Maureen took Hannah’s apathy as approval to manipulate her into a few different positions – kneeling, hands & knees, and even some standing. Hannah didn’t seem to mind and at one point Maureen let go of Hannah’s hips while she was on her hands & knees. I expected Hannah to face plant into the floor. Instead she rocked herself like she was practicing crawling. In that moment I reminded myself to stay out of the comparison game. Hannah is clearly stronger than I’ve been giving her credit for lately.

So what if Hannah can’t crawl or pull herself up yet? That doesn’t make or break her day so I shouldn’t let it bother me. Her social and communications skills are incredibly strong, which is a lot more important for a kid to be happy. Hannah will sure as hell let you know when she’s hungry or tired, or wants more or less attention. She reaches her arms out to me when she wants to be held. She swats her bottle away when she’s full. She reaches for her spoon and whines if I take a break from feeding her. She grabs my hand and pulls it to her body if she wants more tickles. Playtime gets more fun with her each day because she remembers toys or games and anticipates my next move.

First Christmas with Hannah Banana

On January 1, 2016January 1, 2016 By LeeIn HannahLeave a comment

Happy 2016, everyone! Here’s a late photo recap of Hannah’s first Christmas.

So this is Christmas

On December 24, 2015December 24, 2015 By LeeIn Hannah1 Comment

The holidays sure snuck up on us this year. I blame the extended Fall weather and the trees along our driveway that refused to shed their leaves. It never felt Christmasy until it was time for Pete and I to have some friends over for a low-key holiday party and we had no tree or decorations up until that day.

A week ago I realized we still had quite a list to tackle: a few last minute gifts, a grocery list to make, cookies to bake, and a photo Christmas card starring Hannah & Gamy to create. The final gifts wrapped or mailed (a day late, oops), groceries purchased, and cookies in progress. Despite my best efforts the holiday card never happened. Maybe we can do a New Year’s card instead.

Last year as we wrapped up the Christmas festivities with Pete’s family, I turned to his mom and said “Next year will be very different.” I was 32 weeks pregnant and expecting my future 10 month old to be crawling, yanking ornaments off the tree, and eating solid food at the table with us. Now that we’re spending Christmases in Holland things are not as I imagined.

There won’t be any crawling this year but there will be sitting. Hannah picked a perfect time to master sitting up. Now she can look at the tree, play with her gifts, and see her family in a new way. There will definitely be a lot of clapping because Hannah loves the reaction she gets from us. She also does this awesomely adorable shaky face when she’s so excited that she literally can’t hide it. Don’t worry, the doctor said it’s normal.

There won’t be any yanking ornaments off the tree but there will be toy throwing. And chewing. And smashing. When I sit Hannah in the bumbo seat and give her a toy she immediately flings it off the tray. Again and again. One day I gave her a pile of miscellaneous items (toys, socks, bibs, pacifier) and she made shaky face, before throwing each item to her sides. Then she clapped for herself. When Hannah’s not throwing her toys she’s chewing or smashing them. I think she’s trying to get milk to come out. Or chocolate.

There won’t be Christmas ham on Hannah’s plate but there will be a seat for her at our table. I try to include Hannah in our meals as often as possible. I think it’s a good learning experience for her to watch us move food to our mouths and chew. She watches us intently and has even started to lean forward when I bring food to my mouth, eager to have a bite herself. Instead of ham she’ll have a slice of French bread to chew (and smash) and she’ll add chuckles, babbles, and pint-sized yells to the dinner conversation.

One thing I was certain of a year ago is still true today – my baby’s first Christmas will be a magical one. Hannah’s going to love the attention from family, the colors of the wrapping paper, and the stimulation of new toys and clothes. She won’t want to go to bed thanks to her severe case of FOMO (Fear of Missing Out). We’ll let her stay up late to soak up every second of holiday spirit under the glow of her first Christmas tree. We’ll have the merriest Christmas thanks to that little girl.

May I have your attention, please? A big announcement

On December 19, 2015December 19, 2015 By LeeIn Down Syndrome1 Comment

No, I’m not pregnant. And, unfortunately, we’re not getting another dog.

I’ve been daydreaming about something and it’s finally becoming a reality. It’s something that has mentally and emotional energized me and makes me so passionate that I want to cry.

Are you ready?

The inspiration…

The motivation…

IMG_6804 copy

The realization…

Flier raster.png The “I Am Awesome Extravaganza” will be a day dedicated to celebrating our loved ones with Down syndrome and what makes them awesome.

The event will begin with a showcase, where the participants will strut their stuff on stage while our emcee introduces them to the audience. Afterwards, food and refreshments will be served and everyone will have a chance to mingle and make new friends, while enjoying some music, posing for the photographer, visiting the face painter, and taking a chance at winning raffle prizes. Proceeds from the event will be donated to the Connecticut Down Syndrome Congress.

Here’s the story of how the idea came about…One day I was reading my Google alert news and came across a story about recently crowned Miss Scott County in Virginia who has plans to organize a pageant for kids with special needs (inspired by her brother with Down syndrome). I thought that was a great idea except the word “pageant” stirs up other words like outer beauty and competition for me. Now I’m typically not an “Everyone’s a winner, here’s your participation trophy” kinda gal, but in my opinion, every kid with Down syndrome or any special needs should be celebrated. I love every opportunity to show off how awesome Hannah is. Then it hit me – why wait for an opportunity when I could create one?

Within hours I had the whole event planned out in my head. Admittedly I got carried away. Once I got to the “Fifth Annual” I had to reel myself back in to reality. It’s going to be a ton of work and I’m thrilled about that. There’s already been rejection and I haven’t even started hitting companies up for money and raffle donations.

Originally I was planning to post this after Christmas but I couldn’t wait to spill the beans. I’m still going to wait until the 28th to make the official announcement to the Connecticut Down Syndrome Congress and on the local Facebook groups. I hope with all my heart that people are interested. I’ll be doing a whole lot of “Field of Dreams” style praying. If you organize it, they will sign up, right?

Major Milestone: Unassisted Sitting

On December 17, 2015December 17, 2015 By LeeIn Down Syndrome1 Comment

On July 27 we sat down with our Birth To Three liaison and Hannah’s soon-to-be Special Education teacher to write our Individual Family Service Plan. The developmental goal we decided on for Hannah was a lofty one – unassisted sitting. I didn’t have a clue how long that would take Hannah but the list of mini goals was a long one.

Back then, we’d maneuver Hannah into a seated position and keep our hands on her shoulders to keep her stable. The progress was very slow at first because Hannah lacked almost all of the back and core strength to straighten up or stabilize. Tummy time ended up being the best exercise for her because it helps strengthen the back and neck muscles. Slowly but surely, as the weeks went by our hands moved lower and lower down Hannah’s tiny body. From the shoulders to under her arms, then to her mid-torso, then to her hips. One day she was sitting so well all I had to do was keep my hand against her lower back to her tilt

The downside of all this was that Hannah also learned that she didn’t have to sit if she didn’t want to. It was frustrating and adorable when she simply refused to play along. Her muscles would stiffen, stubbornness fueling her to push back against my hands, and tilting her hips so her bum would slide forward. Thankfully that rebellion only lasted a couple weeks.

In mid-November the improvement in Hannah’s strength changed overnight. She was able to sit unassisted for a second or two without crumbling backwards or to the side. Her daycare teachers practiced with her every day and often reported that Hannah was improving quickly. Some of it may have been mental too, realizing that she could see and do much more when sitting up.

Pete and I agreed that Hannah would be sitting solo by Christmas. I’m proud to announce that she beat our guess by 2 ½ weeks! At her Birth To Three appointment last week she sat completely unassisted for over five minutes. Not only that, but she also played with and reached for toys.

Now, Hannah loves to sit in front of the mirror and make faces at herself, or on the kitchen table and make faces at us and our friends. It’s amazing to watch as she wobbles and catches herself from falling. Her body must be exhausted at the end of the day from the tiny muscles contractions. Unfortunately for her, now we’re going to start teaching her how to get back on the floor to lay down.

A Visit to the ENT

On December 9, 2015December 9, 2015 By LeeIn HannahLeave a comment

Holy writer’s block, Batman! Over the last two weeks I’ve tried to force myself and inspire myself to write but to no avail. The only thing I could ever think of was how much I miss Hannah lately when I’m not with her. For example, on Sunday I went shopping for decorations for her birthday party and almost started crying in the middle of Target. I did manage to write one thing last week but it was a pity party about how I sometimes hate being a working mom, don’t want to be a stay-at-home mom, and would like someone to pay me to snuggle with Hannah and take her on field trips. Not an inspiring tale.

Anyway, Hannah has been as adorable and perfect as ever lately. She had her 9 month check-up last week and the pediatrician finally recommended we see an ENT for the chronic congestion. After all the sick visits we’ve had when that poor girl could barely breathe…

According to the ENT, Hannah’s nasal passages are very small and not allowing for easy drainage. She didn’t want to do a scope because she didn’t think she’d be able to see anything with all the congestion and didn’t think it was fair to do to Hannah after having surgery a few months ago. There’s also some fluid in her ears that could be a concern in a few months if it doesn’t drain (because it could cause hearing/speech issues). The Dr agreed with the pediatrician that there’s no reason to give Hannah antibiotics that won’t do anything for a cold.

The Dr’s recommendation is to give Hannah saline drops multiple times a day, have a follow up appointment and hearing test in a few months, and talk to the pediatrician about having Hannah’s immunity checked. Unfortunately there’s not much else we can do except take Hannah out of daycare and put her in a bubble.

The best part of the appointment was that we had 10 minutes to spare so I brought Hannah into work real quick. Her last visit was in October when she was starting to hold herself up while sitting. This time I was able to plop her on my desk so she could see all of my coworkers. This girl is such a ham sometimes!

Happy Thanksgiving

On November 26, 2015November 26, 2015 By LeeIn Life Stuff1 Comment

Last Thanksgiving I wasn’t feeling super thankful because 2014 was a crappy year. Sure, there was excitement from all the babies born and on the way, but overall it kind of sucked. I was ready for it to be over and I vividly remember thinking “next year can’t possibly be any worse.”

2015 tricked me into thinking it would be fun. Then the hits started coming…a car accident, Hannah’s surprise diagnoses, the stress of living on one paycheck during tax season and an oil-heated winter, a serious health issue with a family member, and many other less serious problems that felt like globs of icing continuously piled on a shitty cake that we didn’t want.

It couldn’t have been any later than April when I was started dreaming of 2016. I wanted a new year and a fresh start. We were still neck-deep in our grief and sorrow and anxiety and at the time it seemed like it would never end. I wouldn’t have believed someone if they told me that 2015 would be our best year. The year that we would learn and grow and love more than we ever thought possible. The year that we would have so much to be thankful for, more than I sometimes think we deserve.

In honor of Thanksgiving, here’s a short list of what I’m thankful for…

I’m thankful that Pete and I have parents who will drop everything to help us, and that Hannah has four grandparents that love her to the moon and back. That her aunts, uncles, and cousins are so good to her and give us so much love and support.

I’m thankful that my friends still like me even though I’m terrible at keeping in touch and for still invited us to hang out with them. That the kindest, strongest, most beautiful woman in the world is my best friend and that she always says what I need to hear.

I’m thankful that Pete and I did not let this year break us, and that we love each other more every day, and more importantly, that we still like each other. He puts up with my sassiness and silliness and has the sweetest conversations with Hannah.

I’m thankful that Gamy is the best dog ever, and quickly forgave us for bringing home a tiny, but loud, human. Her interest, patience, and tolerance with our friends’ kids makes me excited for the future shenanigans between her and Hannah.

I’m thankful that Hannah’s daycare teachers take great care of our baby, and that they’re helping us reach her developmental goals. When I hear them say they love Hannah I know that she is in the right place, which means after three months I finally stopped wanting to cry after drop off.

I’m thankful that my employer doesn’t make me feel bad about missing work for Hannah’s appointments, and that my coworkers love Hannah and ask about her very often. Their prayers helped carry us through surgery day.

And finally, this kid.

I’m so incredibly thankful that she is alive. That she survived creation, pregnancy, birth, and surgery. That her heart is healed and that she’s thriving, and learning, and makes my heart explode daily.

I’m thankful that she has my eyes, that she’s already a comedienne, and that she smiles with her whole face.

I’m thankful for the excruciating love that I have for her. I’m thankful that she is ours. That she changed my world and that I have the honor of being her mother.

Hannah Banana at 9 months

On November 23, 2015November 23, 2015 By LeeIn Hannah1 Comment

My baby shower was around this time last year and the little “Piglet” in my belly was busy bopping around, kicking organs. Now, our 9 month old (!!) has been just as active the last few weeks.

She watches everything: One night Pete and I were in the kitchen chatting while Hannah was hanging out in her high chair. She watched us talk, moving her head back and forth to look at whoever was speaking. She notices any movement around her, watches shadows, and loves to look around at the grocery store.

She babbles: The babbling started at the end of the week and hit a high this weekend. It’s a mix of baba, mama, dada, and rara. It’s so damn cute! Hannah thinks it’s funny when we repeat it back to her but is significantly less amused when I show her the video of her talking.

She claps: This is a work in progress but she did it a handful of times last week so it counts. We’ve been teaching Hannah to clap since she was a wee one knowing it would catch on at some point. Just like with the babbling, my heart explodes every time she does it.

She fake cries: My sweet little love has learned to be manipulative! Most mornings Hannah stays awake after her 5am bottle and we play in her room until I need to get ready for work. I’ll pop my head in often to check on her but she rarely even notices me. When she does see me and I turn to leave, it’s instant face scrunching, whining, and fake crying until she sees me return. The other day at Grandma & Grandpa’s house, Hannah woke up from a nap and was content to roll around in her crib and look at her toys. As soon as she saw Grandma watching in the doorway, Hannah turned on the (fake) waterworks.

A few extras…

She’s very close to sitting all by herself

She’s either (finally) signing “mommy” or having a really hard time getting her thumb in her mouth. My vote is for the former.

She wants to touch everything, except her own bottle. God forbid I try to get her to hold that.

She’s enjoying baby food more each day. We tried yogurt yesterday but Hannah seemed suspicious of the texture and temperature.

It Finally Happened: The R Word

On November 15, 2015 By LeeIn Down SyndromeLeave a comment

I’ve been dreading the day someone uses the R word around me. Butterflies in my stomach, lump in my throat kind of dread. I thought I had a good idea of how I could respond calmly, stern yet polite. I was completely shocked by who ended up saying it to me and the ability to respond was nowhere to be found.

I was involved in an unnecessary customer-caused crisis at work. A coworker and I were discussing the customer’s needs with a Sales rep, someone I hadn’t met until that moment but will be working with often.

Instead of saying ridiculous, absurd, poorly planned, shit-show, or even cluster-f*ck, he called the situation we were in “retarded.” My physical reaction caught me off guard. My hands turned to fists, my shoulders tensed, and I felt like I’d been slapped in the face and punched in the stomach. I looked at my coworker and saw a look of shock on her face.

Shortly after, the Sales rep and I were standing in the office making forced small talk while we waited for someone. I told myself I could casually bring it up in conversation…

“Oh, you live in New Jersey? I used to live there! By the way, using the R word is disgustingly offensive.”

The more I strategized, the madder I became and the less I wanted to look at him, speak to him, or help him. Clearly not acceptable behavior while at work. I put on my big-kid gloves and swallowed the emotional vomit until the customer’s problem was handled and I could have a minute alone. After a couple hours, I was finally able to retreat to the privacy of the company’s lactation room and let the pent up emotions run wild.

I was mad because, not only did this guy offend me within the first three minutes of our conversation, but he continued to be rude and pushy for the remainder of his visit. It annoyed me that someone so unworthy of my energy had affected me to that degree. (I found out the next day that other coworkers who helped resolve the customer’s problem were also irritated by the guy’s behavior and offended when they learned what he said.)

I was embarrassed because I felt like a hypocrite. I’m guilty of using the of the R word in my pre-Hannah life. Instead of saying drunk, stupid, or lame, I shamefully used “retarded.” I even caught myself saying it a few times after Hannah was born. I always knew it wasn’t a polite word to use; however, it somehow seemed acceptable in the privacy on my own world. If I’ve never been perfectly politically correct how can I expect the same from others?

I was worried because we’re almost 9 months into this journey and I wasn’t ready to hear that word. I wasn’t ready to defend Hannah. I didn’t want to hold back tears while desperately trying to lecture someone on which slang words are appropriate. It was instant defeat. I feared I’m not the advocate that Hannah deserves.

That night I told Pete the whole story and let myself get worked up again. We talked about how it’s a word that means so much to some but absolutely nothing to others, and that we should prepare ourselves to continue hearing it used unnecessarily. I can only hope that next time it happens I’m better prepared to spread some serious awareness.