First Week of School

 Lots of learning and flexing and more adapting this week as we step our toes into remote learning for the semester. 

Nora will be sitting with us in our bedroom (WFH office 👎) so that we can oversee her work and help her as needed. Why our bedroom? Only the bedrooms have doors to close. We have a 3rd floor but it’s hot as Hades during the summer. (Our HVAC isn’t strong enough to cool all three of our floors which is a story for another day) Tim is okay working in the unfinished basement - I am not. I need daylight.

Our caregiver and Hannah will be on the first floor and we don’t want to be a distraction. 

On the first day, the neighborhood Moms wanted to take their annual 1st Day Photo. We aren’t bus riders, but I appreciated the inclusion! I’ve enjoyed slowly getting to know all the other elementary families and like feeling included. 

Learning Nora’s new school platforms (Schoology, Flipgrid, etc), where to find her assignments, Google Meets, gathering passwords, has been a learning process this week. We have Facebook groups for all our district’s remote grades. It’s actually quite helpful. 

Our caregiver is taking Hannah to her house for afternoon Kindergarten. Again - less of a distraction. Mentally, if Hannah is in a new space, she understands it’s time for school. So far it seems like it’s going well. 

Monday afternoon we had a knock at the door. A woman, Molly, from down the street came over with her daughter, Jordan. They wore masks which I totally appreciated and thought was very polite. Molly had run into Tim and Hannah on a walk not long ago. On the Kindergarten video class, Molly saw Hannah and was excited to see her. She walked around the corner with Jordan to re-introduce themselves. It meant so much to me. I’ve worried that Hannah would have no classmates/playmates in our neighborhood and it makes happy to know there’s a girl in Hannah’s grade a few houses down. 

The following morning, Molly texted to say Jordan woke up happy and excited she met a new friend 😭

Learning curves, getting used to new schedules, but slowly getting our footing.

New Dentist, Same Result

I tried out a new pediatric dentist last week, a little farther away - it’s a larger practice with more rooms, even a “sensory” room. Our visit was merely an exam, not a cleaning. 

I had my phone ready with Hannah’s favorite show, but we still went through the same sh*t. 

Let me go over what we’ve tried practicing with Hannah:

• Electric toothbrush against her skin
• OT exercises to get her comfortable with hands in her mouth
• Laying down and counting her teeth
• Dentist visit books
• Dentist visit videos

Hannah was cooperative at first... we hung out in the parking lot until a staff member escorted us in. They took our temps and we walked through the office. We came to a room and Hannah immediately was reluctant to even get up in the chair. 

I got her up in the chair and she FOUGHT to lay back. 

The dentist, myself and the hygienist tried out best to no avail. The dentist said Hannah needs to first practice just laying down in the chair - which is the most vulnerable position which is probably why Hannah fights it so much. AHA! No one has ever explained that to me. 

Tim took Hannah to a 2nd “Happy Visit” and she did a bit better, but did lay back for a second and let the hygienist show her the tools and look in her mouth a bit. 

I want to continue regular Happy Visits. A gal at the front desk made some comment about “Oh after one Happy Visit, kids are usually good.” I wanted to give her the biggest eyeroll. It’s not that simple, lady. 

I’m hoping with monthly Happy Visits, we can get to an actual cleaning in January.

Hannah's Cardiology Appt 2020

We originally had Hannah’s annual Cardiology appt in mid-April but clearly was rescheduled for last week. 

We tried practicing our masks with her, but when we arrived at Children’s, she was not having it. 

Foot traffic was diverted to multiple screening lanes. We had to wipe out hands down with antibac gel, grab a disposable mask if you did not have your own, then have our temps taken. Thankfully the staff understands small children (and those who may have sensory issues or developmental delays) can’t tolerate masks. 

Hannah’s echo always takes the longest - close to 30-40 minutes. There were twinkle lights on the ceiling and Paw Patrol on the TV. So between that and constant song-singing, she did great. 

Her EKG was fast then Dr. Hanke came in by himself - typically the Cardiologists have 1-2 fellows with them. Dr. Hanke said Hannah’s valve leakage is a touch more and her left ventricle has very slight narrowing. Not super news, but nothing to be alarmed. If these trends continue, she could (!!) need another repair - heaven help us. 

I messaged Dr. Hanke later after mulling over the appointment. he reassured me that the odds of Hannah needing another repair are extremely low and that these regurgitations tend to ease over time.

Distant Memorial Day Weekend

While we are still taking Covid-19 seriously, we did finally step away from our home and into some backyards this Memorial Day weekend. It felt nice and “normal” while still keeping our distance and outdoors where the risk is lower.

Saturday afternoon we spent a little time in my in-law’s back yard. The girls played and swung while we all sat/stood around for about an hour or so. It was the first place our girls have been since school closed on March 16th. 

On Sunday we made a reservation at the Cincinnati Nature Center - it’s open to members only at this time and it was really great - very few people and since the Playscape and center are closed, we finally walked on a trail 😆

We had a little kiddie pool time in the yard, then cleaned up for Tim’s nephew’s graduation “party.” My SIL was very creative and among the few people invited, we signed up for time slots to avoid a crowd - which I know I appreciated. The gathering stayed outdoors. Nora probably talked nonstop since, again, she’s seen no one for so long, she was so excited. 

Afterwards, we picked up some Dewey’s curbside carryout, then had a group friend Zoom chat that evening. 

Monday we had more kiddie pool time and took it easy. 

It was a good weekend that felt partially social but in a safe manner. 

Ohio Quarantine Week 5

Last week was rough.

Monday I had a dip into depression. It wasn’t full blown, but enough to throw me off. It sucked. I heard from a lot of other friends that they were in a deep funk Monday too. I wonder if since Easter was so isolated and not as social, it threw everyone off? 

Tuesday Ailo was zooming around the yard and we think he strained something. He yelped in the driveway and Wed was whimpering and limping a bit. Tim took him to the vet which made us anxious. But the vet team was covered in protective gear and Tim wore a mask. No one was in the store (Banfield is inside PetSmart) while they examined Ailo. They found nothing and sent him home with anti-inflammatory meds for two weeks. 

Wednesday I had an all-office lunch Zoom catch-up. Towards the end of the call, I put on my big girl pants and knew I was going to get vulnerable. (Twenty people on a Zoom call) I thanked everyone for giving the parents patience. I said "This has been really really hard." and my voice cracked. Ugh. Then my eyes started welling up and I said "We parents really just need some grace and empathy. We cannot work 8 straight hours a day, we are breaking up our days from 7am to 11pm." Everyone was very kind. One of my friends started tearing up, another had to turn away from her camera b.c she started crying. Every Mom messaged me after that call and thanked me for having the courage to speak up. I'm so glad I did, even if it meant exposing emotions - which is sadly rare in my office. 

I had a 4:15pm call with Hannah’s OT and teacher, Ms. Booth. As soon as Ms Booth gets on these calls, Hannah freaks out and runs away. I do not understand it. Hannah refused to come back to the laptop. I had to talk through her skills with her OT. When I got off the call at 4:30, I thought it was quiet and Nora came over to me to tell me Hannah had fallen asleep on the couch - this never happens. It's literally the 2nd time in Hannah's entire life she's randomly fallen asleep anywhere. 

The rest of the week went better. We had a Zoom “date” with good friends in Denver Friday night. Saturday and Sunday were quiet. Still chilly here and wasn’t terribly sunny. 

I had a pretty successful Kroger pickup Saturday AM - got a lot of produce and maybe 90% of what we asked for. 

Hopefully this week is a little less emotional!

Ohio Quarantine Week 4

Week 4 of the global pandemic quarantine happens to be our spring break. We had nothing planned for spring break - per usual. The girls were actually going to be at Extended Care Mom-Thu anyway. Tim and I were supposed to be off work Fri and Monday. “Vacation” days - ha! We are now splitting the days  - that way each of us has a full day to focus only on work. 

This week’s wrench: tornadoes! 

Wednesday night I had gone to bed before 10pm - my usual - and by 10:35pm Tim was in the bedroom giving me a warning that there was a huge line up and down our area for a tornado warning. The city sirens were going off. 

We sat downstairs for about 10 minutes watching the local weather when the winds outside picked up and sirens came on again. I immediately rushed upstairs and scooped Hannah out of her slumber, Tim got Nora. We went down to our cold unfinished basement and sat for 15 minutes. 

We came back up around 11pm, Hannah went immediately back to sleep. Nora, not so much. I had a hard time falling back asleep - awake until midnight which is BAD. Thursday I was a grumpy mess. 

Our weekend was good; sunny Saturday with grass mowing, walks, and video catch-ups with friends which is normal now. 

Oh yeah! Nora finally lost a top tooth last Saturday morning!

Our dumb dryer power button broke AGAIN - twice in seven years now. Poor design on GE’s end because you have to replace the entire control panel. I was proud of myself for remembering this from the first time it happened. I ordered the new control panel, swapped out the circuit board and put it all back together. For someone who is admittedly not handy, I’m pretty proud of myself. 

I miraculously got Easter goodies before the pandemic swept in, so I was ready! I think Nora loves Easter more than Christmas! Awake at 5:30am and I slept in her bed with her - she knew to stay in there until 7am. Goofball. 

Quiet lazy Easter here, with some additional bacon and a chicken and mashed potato dinner 😆

Ohio Quarantine Week 3

Our moods are getting better - I know the weather helps. Everything around us is blooming and green - thank goodness. 

This past weekend we were actually incredibly busy - with home work. Tim changed some lightbulbs, installed a new light switch in Hannah’s room, then we tackled trimming about 9 honeysuckle bushes along our property that borders the road. Anyone who has honeysuckle on their property knows how aggressive that plant is. We took turns for about 6 hours. It was nearly 80 degrees that day - not typical for March in Ohio. 

Then we grilled out and sat our butts down. 

Sunday I did a 3 mile run, then I took Nora with me to my office – I need my office chair for my back! PLUS our office managers were gracious enough to offer up supplies - TOILET PAPER. With three girls in one house, we go through it quickly 😕We had tons at the office so I took 6 rolls, one roll of paper towels and some tissues. Our snot and colds here have not completely subsided, so we are still in need of tissues! 

I’m glad I could leave the house and take Nora with me - I think she needed it. Nora also had expressed wanting a family photo with very specific art direction; she would hold Hannah and Mom & Dad would stand behind them. Tim held the phone out as long as his arm would allow, and wouldn’t you know it – it came out amazing : ) 

We did buy Nora a Lego set to keep her occupied - she finished in about three hours! She has been super unmotivated... I can’t blame her, our girls had such a routine that has been thrown out the window. 

Extra Fear + Hurdles

As a family with a child who has “special” needs, this pandemic holds a lot more hurdles and fears for us. 

First, while Hannah technically does not have an immunocompromised diagnosis, she tends to catch viruses much easier and they last a lot longer. As soon as our schools closed, I put our family on lockdown. We ONLY go out for food and TP - if we can even find it. My daughter has been in the hospital enough over the past (near) six years, I refuse to even give this virus a chance. 

Folded into that point, did you know the ethical and social equality issues that lie in WHO gets life-saving treatment? “The plans struggle to address a range of ethical issues, and also matters of social equality. People with underlying medical problems may get ranked lower, yet low-income people and people of color often have more health problems because they cannot afford top-notch care.”

Who Gets Treatment?

Washington, Alabama, and Louisiana all have guidelines that may exclude patients with dementia, AIDS, underlying health issues, or people with severe cognitive delays. It’s terrifying that someone with Down syndrome has the potential to be denied life-saving services because they aren’t deemed worth saving. I am thankful Trump has stepped in and said disability should not be a reason to deny virus care. 

No Denying Care

Finally, while ALL kids have been thrown in the deep end and parents left to fill in teaching roles, a lot of students on IEPs now lack their weekly interventions; occupational therapy, speech therapy and physical therapy. I am grateful our preschool has scrambled to get teletherapy in order; we now have weekly video chats with Hannah’s therapists. We bought a printer and have supplies and tools to help Hannah keep her tasks up to date. However, we still have to carve out the time because Tim and I both STILL HAVE TO WORK - THANKFULLY. Grateful beyond belief for our jobs. 

At Home With Special Needs

So many of us parents feel stretched thin. Especially those with kids who had extra support. Be gentle with us. 

Ohio Quarantine Week 2

Our first quarantine weekend was good.

We FaceTimed friends Friday night. My office had an online Happy Hour. We blew up the air mattress and Nora got to watch a movie we actually purchased. 

Last Saturday was some laundry and bathroom cleaning. We made cookies. I made a ClickList order for a Tuesday pickup – I had a hunch a lockdown was coming so I made sure to get ahead of the game. I was right. 

Sunday I ran 3 miles after feeling anxiety and sadness creep up. By the end of the day we were all in a good mood. 

We took a drive to nowhere just to feel like we were going anywhere. It was actually nice - we live on the edge of the greater Cincinnati metropolitan area, so we can dip into rural country very easily. Both girls fell asleep and it was actually nice.

Week 2 has been better-ish; our expectations are set (lower)... I’ve seen enough social chit chat telling parents to give themselves grace; at the end of the day, if the kids are happy, their mental health is more important than academics. I keep reminding myself that and I feel less tense. 

The influx of worksheets, emails and links from the schools and therapists are a bit overwhelming; 26 so far since the schools closed on 3/16. All Hannah’s therapists are wanting to schedule video therapy for Hannah which is just adding to my stress of working and keeping the kids progressing.

Emails, emails, emails.

Spring is here, flowers are out, everything is turning green - thank God this weather is now cooperating for our mental health and moods! 

I wish I could pop out and get flowers but I’m staying back for the greater good!

The World Stands Still : Quarantine Week 1

The 2020 Pandemic has been sweeping from China to Europe and now the US.

As soon as governor Dewine announced Ohio schools would close for at least 3 weeks, my gut said to lock down in our home and limit our exposure out and about. I had an oil change on Saturday and Ailo had a checkup. We got a carryout pizza and that was about all for leaving the house. 

It’s pretty astounding how much my view changed from when Governor Dewine announced Ohio schools closing (Thursday) to Sunday. Kids with DS - again - catch a lot and have a hard time shaking viruses. 

Almost immediately, Moms on Facebook were clamoring for homeschool ideas. So of course I was swept up and felt the need to start getting ideas, too. Additionally, the girls’ teachers had links, files, and ideas too. I tried my best to compile and get ready. 

I told my office on Sunday that I would be working from home for the foreseeable future - at that point I believe Ohio wanted groups of people under 100. 

Monday came and I tried so hard to stick to the “schedule”... the girls weren’t always compliant. Additionally, having a kid with delayed development during this is double hard; I can’t send Hannah off with a worksheet; she needs 1-on-1 guidance for most tasks. Preschoolers learn through play. And you know what two parents who work 40 hours a week can’t do? Play. 

Tim’s 1st week was busier than usual and thank heaven my week was lighter than normal, so I ended up spending a lot of time trying to keep the girls busy. 

Monday night after my schedule fell apart, I cried. We had SUCH a routine and it’s dissolved. Knowing this lockdown will go on for a while, I’m sure we’ll get back to some type of “schedule” - loosely. 

We had a good weekend and Week 2 of quarantine should be a touch better now that we have expectations and know we have to stay loose. Our girls just aren’t going to get super homeschooled and we have to give ourselves grace. 

Dentist Saga (Hannah)

I’m not sure I’ve continuously documented Hannah’s dental visits here, but they have been... disastrous. 

We’ve been going since she was three years old and every cleaning we end up restraining her and she loses her ever-loving mind, screaming. It’s awful. 

This week I even told the manager about Hannah’s phobia of the loud buzzing brush - they kindly adapted with a regular toothbrush with fluoride, and sat in my lap facing me, head back in the dentist’s lap (still a little weirded out by that) and I still ended up restraining her. 

I think she just doesn’t want people in her mouth - it’s a control issue. 

The current pediatric dentist is “fine.” Very nice, experienced dentist and staff... however, they are a bit older, so I’m not sure how savvy they are with a lot of kids who have sensory needs and what different strategies can be used. 

I will most likely look into other offices a bit further away who have been recommended and have various strategies for sensory issues; TVs, therapy dogs, etc. I’ve even heard of people laying on the floor for cleanings. 

At the very least we need to take baby steps and friendly visits to get Hannah to a comfortable level. I really don’t want my child to have a fear of the dentist. Nor need to be sedated. Hannah is already going to have several dental issues - small mouth, overcrowded teeth. The current dentist already mentioned expanding her palette. 

It makes me sad and anxious. 

In related news, dental students just now will be trained to care with those for special needs - !

“The National Council on Disability helped push for the change in standards after publishing a report in 2017 showing that adults with developmental disabilities are at higher risk for poor oral health and face multiple barriers to accessing care, including a shortage of appropriately trained professionals.”

Something you never think about, huh?

Ballet Moves

Well we wrapped our first session of Ballet Moves with Cincinnati Ballet this past Saturday. It was such a great program - Hannah really enjoyed it. I enjoyed seeing the kids & parents every week, too!

We may try a new dance/tumble class in Loveland starting in January; closer to home : ) 

2019-20 School Photos

Here they are!!

Halloween 2019

Nora was “Mal,” from Disney’s The Descendants and Hannah was her favorite song, Baby Shark : ) 

The weather was typical Ohio: plummeted to 37˚ and blustery. 

Tim ventured out with the girls next door. Hannah received one piece of candy and amid the barking dogs and cold, said “Home!” Thankfully the neighbors were meeting up to trick-or-treat and took Nora with them. 

We didn’t see Nora until 7pm when she came to dump her bucket, put on a winter coat and go back out - !! She came home at 7:30pm with another full bucket. This child used to last five houses the past five years. We are ruined! Now she knows the haul she can really get if she stays out! 

Haha!

Viral Stories

Down syndrome Awareness:

Look.

I don’t need my daughter to be Homecoming Royalty or an “honorary member” of a sports team or squad. Viral stories are a blip in what matters in the long run. My child shouldn’t be a charity act for another typical child. 

Obviously I can’t speak for the families whose students are “honored” in these viral stories - I’m certain it’s still a great feeling to see care for our kids - But I do want to know what happens the following week: Are students eating lunch with the girl with Down syndrome? Are students inviting the boy with autism to their sleepover or birthday party? THOSE are the events that truly matter.

Kindness is not a 1-and-done action.

I would rather my daughter have daily, meaningful moments of GENUINE friendship and inclusion than one big gesture that gets thousands of “Likes” and “Shares.”

Inclusion is not just for special occasions. Be kind and inclusive ALL the time.

Hannah’s Birthday Invite

Hannah had her first birthday party invite on Saturday that wasn’t a “whole class” invite. I was SO touched. The Mom said Birthday Girl asked to invite Hannah first. The Birthday Girl was SO sweet with Hannah; taking her hand, playing with her, telling her to sit next to her… it made me feel so LIGHT. The Mom and Grandmother knew Hannah and were so accommodating and lovely to Hannah, even when she was hesitant to sit, take a photo, or shy away from the high schooler dressed in a shark costume : D 

I’m thankful for sweet new friends. 

I’m also thankful we showed up halfway through when all the kids were exiting the pool so I didn’t have to get in with Hannah 😆

*Disclaimer: I was behind the phones making silly faces so Hannah would participate.

Invitations For Hannah

It’s hard as a working parent to get involved at school, let alone preschool – Mother’s Day program at 11am? I can’t! I don’t know many other kids or families and Hannah can’t communicate who her friends are. 

Then two rainbows popped up a couple weeks ago. 

First, a Mom reached out to me asking if I was Hannah’s Mom. Her daughter talks about playing with Hannah at school. The Mom suggested we make a playdate and I thanked her - what a big deal for us! Preschoolers do not see differences. 

Then the same week, Hannah received a birthday invitation - except this wasn’t an entire-class-invite. There were only two other kids invited. I had to message the Mother to even confirm that her daughter went to Milford preschool! The Mom told me her daughter named Hannah as her first friend she wanted to invite 💕


Now, this birthday party overlaps Ballet Moves and it’s at our swim school, so that means I have to put on a bathing suit to attend Hannah in the water. Normally I wouldn’t have even accepted this invite, but because Hannah was specifically asked among two other children, I’m going to pony up because this means a lot. 

I walked Hannah in to Extended Day after her eye appt this morning and everyone chimed “Hannah!!! as if she were Norm at Cheers. It always makes my heart swell. 

Hannah’s 1st Dance Class

A good friend in the Ds community wised me up to an amazing program put on by the Cincinnati Ballet. Ballet Moves is an inclusive dance/movement program for kids with specific needs. 

The kids are in classes with similar ages. Each child is paired with a physical therapy student - !!! How. Awesome. 

The first class was a little chaotic for Hannah; it’s her first organized class and with mirrored walls, well, she was more interested in watching herself than sitting in the group circle. The PT was super helpful and they understand it’s Hannah’s 1st time. 

I’m hopeful that with each week Hannah gets more comfortable and understands the group setting and participates : ) 

*Jack Barlow is a couple years older than Hannah and has already made quite an impression at the Cincinnati Ballet 💗

Age 5 Growing Pains

Man, we got too comfortable with Hannah’s behavior... 

Literally right after she turns 5, the school reports trickle in...

First were some concerns from her therapists: 

• Hannah was chewing her fingers which is new behavior – and is a health risk (germs)
• Hannah has been toe-walking – not great, we want her to have a typical gait

We were able to look into Hannah’s mouth and found that one of her missing incisors (#3 in the top row) was coming in finally - ouch! That may explain the finger chewing. 

Her therapists gave her a “chewy” – it’s super common for kids with sensory needs. The most common one looks like a silicone lego that kids chew on to keep busy. 

Hannah sort of uses it, but we need to make it more regular to see if she really needs it or it’s a temporary “teething” need.

Then there were some reports of just plain ornery-ness; taking shoes off, throwing glasses off and darting out of the classroom. What the heck Hannah! I followed up with the best we can try; distraction, redirection and praise for good behavior. Reprimanding Hannah and reacting to negative behavior only reinforces the bad behavior. 

There was a 3rd report, but I don’t want to publish it for Hannah’s future privacy sake. Let’s just say it was more sensory exploration that should be done alone in her bedroom - sheesh. Actually quite common at this age for kids with Ds. I’m just not sure if she understand it’s not a public activity. 🙈

Hoping this phase passes quickly - !!

Hannah's 5th Birthday

Wow - blogging is becoming a past time - life is busy with work, two kids in school, and housekeeping all wrapped up in a bow!

Our Little Warrior turned 5 on September 1st. We had a large birthday party since we decided to chill out on the Buddy Walk this year; the two events always butt up to each other which overwhelms me. 

We had family and friends over. Probably the last BIG party for Hannah - I want to reduce to just a few friends next year 😀

I steered away from gifts - mainly b.c she has most of what she needs and doesn’t really take to toys – Hannah prefers playing with you or just being plain active. 

The appointments and procedures have slowed down as age five is on us. Therapies happen at school. Hannah is ultimately potty trained which I’m thrilled and proud of. 

She is mostly a happy kid but definitely gets frustrated when she doesn’t get what she wants - like any typical child. 

We love you Hannah Banana!