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.

CDSC 30th Annual Convention

On November 8, 2015November 8, 2015 By LeeIn Down Syndrome1 Comment

I’m baaack.

I wish I could say last week away from the blog was productive and full of exercise, cleaning, writing, and fun family adventures. In reality, it was a busy week at work and I fueled myself with leftover Halloween candy, causing me to fall asleep every evening after putting Hannah to bed and wake up sometime between 8:30 and 9:30 pm in a total haze.

I was dying for this particular week to end because I was looking forward to attending the CDSC’s Annual Convention. My parents came up to join me while Pete and his mom tag-teamed watching Hannah. The convention was great and made me very excited to attend a national one in the coming years.

The schedule was broken up into 3 sessions with 5-6 different program options, two were held before lunch and the Keynote speaker and the third was after lunch. At the very end of the day the older kids with Ds presented the posters they worked on during their Self Advocate sessions. The day ended with a presentation by Mark Hublar.

Session 1

10 Things Every Parent Should Know about Birth to Three – tips on effective ways to deal with disagreements or an unresponsive B23 team. The moral of the presentation was to check B on your IFSP if you don’t agree with it and your team has 30 days to resolve.

The IEP is the Key to Effective Services – main message was most IEP’s are significantly flawed and that parents must hold teachers to higher standards of accountability

Session 2

Mindfulness, “Learning to Surf Life’s Waves” – total bust, it turned into a mini-therapy session with 10 minutes of meditation techniques

American Academy Pediatric Guideline Review – detailed overview of every area where a child with Down syndrome needs health supervision based on consensus recommendations of a panel of AAP geneticists and pediatricians

Keynote speaker

Amy Allison, Executive Director of the Down Syndrome Guild of Greater Kansas City. See recap after the break.

Session 3

Planning for the Future of Your Child with Special Needs – an overwhelming amount of information on how to plan for Hannah’s financial future

Knowing the Red Flags of Vision and Learning – evaluation by an ophthalmologist is “better” than seeing an optometrist, but strongly recommended an optometrist with experience in behavioral and developmental vision care

Presentations by Self Advocates

Most people left before this but I wanted to stay to show support and get an idea of what the life of a teen with Ds is all about (basically friends, school, Taylor Swift).

Presentation by Mark Hublar

At 51 years old Mark is an amazing self advocate. He lives on his own, drives a moped and car, has a job, and travels the country to speak, lobby, and campaign for Down syndrome awareness.

Amy Allison’s presentation focused on how to build your tribe and touched on getting through IEPs, and how to raise a strong self advocate.

Build your Tribe

Drain your moat – don’t put yourself on an island

Teach by example – using People First language, etc.

Provide strategies – help your tribe

Check ego at the door – what you want might not be best for your child

Give second chances – but third chances are rare

Focus on today & don’t borrow trouble

Make & share your long range vision

Make friends with your neighbors before you need them for an emergency

If you want people to support your child, you need to support their children also

IEP

Make an “All About Me” book

Bring treats and a picture of your child

Are you making extra work for them?

Celebrate successes together

360* approach to behavior

Find the professional who wants your child

Have an exit strategy when trying new things

Volunteer and join PTA

Raising a Happy & Strong Self Advocate

Develop good social skills and coping skills

Ask for help and make mistakes

Have disabled and typical friends

Set bar high

Recognize potential & challenge them

Break the prompt, praise, and reward cycle