Wednesday, October 18, 2017

Disability Discrimination

It’s alive and it sucks. I have a friend who was quoted a higher rate for her daughter at a daycare for “special needs“ - this sweet girl did not need any extra care than another typical kid.

Another peer just this week was asked to discontinue swim lessons because the instructor had no special needs training... despite the boy’s father holding him the entire lesson. Thankfully the business acknowledged their mistake and were incredibly sorry.

And now, shame on you, United Airlines.... “had they bothered to ask, they would have learned that Sean is a very capable young man, and Eagle Scout, a graduate of the Mason LIFE program at George Mason University, an athlete, and an employee who lives on his own with roommates.” (link below)


If your business isn’t sure how to handle these situations, training DOES exist. DSAGC has an Outreach Coordinator who will come and train your staff on down syndrome and how it can positively affect you:

When I do presentations I try to tailor it a bit depending on the audience.  So if we’re talking to medical professionals I’m sure to talk about ways to give a sensitive diagnosis, with educators I may mix in classroom modifications for learning, or if it’s business owner and employees who are serving customers or clients with disabilities I will speak even more heavily about stigmas, avoiding assumptions, people-first language, etc. I’m always sure to share anecdotes about the children and adults I know through the DSAGC and what they are capable of.

Presentations typically cover these areas:

-        What the DSAGC does and how we support families
-        What IS Down syndrome
-        Common visible and invisible traits, strength and challenges
-        Common medical issues and how they may or may not influence interactions
-        Life expectancy and what people with Ds CAN do – learn, attend school, work,
          volunteer, vote, date, cook, live independently
-        Language, people-first language, what to say and NOT to say
-        Inclusion in many forms”

Mariclare Hulbert of DSAGC


Wednesday, October 11, 2017

Lately in Photos

Nothing too out of the ordinary lately. It’s been way to warm for mid-October in Cincinnati. Our A/C was turned BACK on on this weekend - booo. 

October is Down syndrome Awareness month, but I post so much Ds news and updates here, the pieces on social media are just redundant. I just hope people feel comfortable to ask questions - I’ll never stop educating! 


Hannah at her latest eye appointment. She looks so big!

Tim and I had a date night a few weeks ago thanks to my parents!
We ate at a local place then went to Target alone!


Little Peanut practicing her jumping! I love this face!!

Went to our local farm for pumpkins and a hayride!

Scary ooooooo!

Yup.

Our good friend, the Nappy Wolf of Shaw Farms.

Laughed out loud at this while in (slow) traffic.

Nora has been “lonely” in her room and we finally agreed to let her sleep with Hannah. It’s actually been beneficial for us for the two weeks or so it’s been going on. We don’t stay with Hannah until she falls asleep. One of us gets a good extra hour to clean up or exercise. And Hannah has been sleeping through the night.Nora falls asleep first, then Hannah snuggles up beside - or ON - Nora and falls asleep. It’s very cute.


Tuesday, October 10, 2017

Hannah Progress

Just making some notes to record based on reports back from Hannah’s preschool team - lots of progress! We’ve also noticed her word formation is becoming stronger!

Hannah and I were playing with a new gift from Aunt Molly last night and Hannah was able to match her shapes - woo hoo!

She continues to work on her PT skills; walking across a low beam, using both hands on the stair rail for support, bean bag tossing...

In OT she’s working on sorting/matching. Last week she sorted 7/10 objects and threw the other three (but did pick them up). Geez Hannah!

Her ST said Hannah did so good last week, she thought we worked on vocabulary with Hannah - we didn’t (!). Half the vocab words she verbally approximates (tries to say) and she imitates almost all the signs as well. Hannah seems to do best with her speech in my opinion, which I love.

Ms. Booth (her teacher):
“Hannah impressed us as she is really trying hard to do the motions to our welcome song!”

Today is picture day also - ! I asked the sitter to groom her a bit before she got on the bus - I really hope someone gets the barrette to stay in her hair!

Friday, September 29, 2017

Hannah @ Preschool

Hannah has been doing well so far at school - it’s only been, what, three weeks? 

I realized last week I wasn’t getting any reports on how her day was going, but I hadn’t written it in her IEP. I decided to just ask if there was some way to have a summary of her day/week - couldn’t hurt to ask! 

After some back-and-forths, Hannah’s teacher returned with this form for a daily report. I think they must use it for other kids as well. We received one yesterday and it was so great... the teacher wrote specific notes on each activity. Her speech therapist had specific feedback on how their session went. 



I feel much better! Though on “snack time” yesterday, Hannah did not eat her graham crackers. I wrote her teacher asking if Hannah ever eats snack and if she stays seated. This was Ms. Booth’s response: 

Yes she does usually eat snack.  She must not have liked the snack yesterday.  She tries to get up a few times during morning work, carpet and snack.  She thinks it’s funny.  I will tell her to sit back down and she comes up and gives me a hug and says “aww.” She must know she’s cute :) .  She will then go back to her seat and sit down.  She just needs redirected a few times.”

Stinker.



Wednesday, September 27, 2017

Nora Learns About Ds

In a non-eventful way, Nora finally connected the dots that Hannah has Ds. Or maybe she already had (she’s smart) and she verbalized it this week. 

During bedtime with Tim, Nora was pointing out which characters in books were Hannah and which were her (these were given to us when Hannah was born).

What I Want You To Know

47 Strings

This morning she picked up a DSAGC flyer and said “Hannah is one of the people we walk for at the Buddy Walk.” I was startled - this was the first time I’d heard her describe Hannah as having Ds. 

“Yes she is! Do you know what it means to have Down syndrome?”
“It means you have to do therapy.”
“Well, yes. It means it just takes Hannah longer to learn things.”
“How did she get it?”
“Well, she was just made with extra ingredients in Mommy's belly.”
“But you, me and Daddy look alike.”
“Well, yes, but... Hannah looks like us, too. We all have our own special look.”

I ended the conversation with “...and we’ll make sure we take good care of Hannah just like we have been. We’re doing a great job!”

She stared at the flyer a bit longer and then that was it - went on singing the John Lithgow kids’ songs on the stereo. Unfazed just like a sibling should react with that information.

Siblings don’t see the Down syndrome. They see the sister/brother that they love.

video



Wednesday, September 13, 2017

PRESCHOOL!

I posted on social media that a friend once told me having children is like having your heart live outside your body - which is how I felt taking Hannah to her first day of preschool on Monday!



Let. Me. IN!







I’ve never been emotional about sending Nora - she’s always been very independent and clever. Hannah is equally independent, however, the hard part is that she can’t tell me how her day was or what they did. The staff doesn’t know the nuances of her signs or partial words. 

Hannah didn’t know how to follow her class in single file - I know she’ll learn that eventually. She tried to sit down and color at a seat that wasn’t hers and two little girls just sort of stared at her - hopefully just curious as to who the new girl is. 






Hannah was super busy checking out the classroom. She made it easy for Tim and I to slide out - saying “Bye” to her may have made leaving more difficult. I may have shed some tears leaving the preschool...

Around noon on Monday Ms. Booth emailed me: I just wanted to let you know that Hannah had a great day today.  She played nicely in centers, loved the swing outside, and sat in a chair for circle time. Please let me know if you have any questions or concerns.”



It was so nice of her to let us know how Hannah’s day went. 

Our sitter, Alison, said Hannah was so happy getting off the bus to greet her. An aide was sitting with Hannah in a seat. 

On Tuesday, Alison said Hannah had no problem getting on the bus - Hannah was excited! 

So we’ve gotten over the initial hump of preschool... I hope Hannah has a great start to her school journey... I just hope she finds true friends and people aren’t just “arms-length pleasant,” as Paul Daugherty says. 


Friday, September 1, 2017

THREE!

I can’t believe Hannah is three now! So many more accomplishments met! Walking now, getting more confident with stairs, words are slowly starting to find formation. Preschool starts in ten days - ! 

We still need to learn to jump, drink from an open cup and listen to Mommy & Daddy - especially when we need to hold hands for safety! 

She’s certainly a sassafras, too! She yells at Ailo when he’s in her way “Eye-LOW!” She certainly lets Nora know when she’s irritated, too. 

So don’t be fooled by the extra chromosome; she is acting like most typical 2/3 year olds! 

Happy 3rd Birthday Hannah Banana! We love you so much and thank you for all the lessons you’ve taught us! 


Thursday, August 31, 2017

Hurricane Harvey

It’s hard watching people lose everything they own in these natural disasters. Even more so as a mother and with a child who has different needs. 

I’ve chose to donate to specific places that I know are on the ground there. 

Diapers and wipes for babies.

Those with Intellectual and Developmental Disabilities

The Eicher Family

I know there are countless other places that are truly out on foot helping others. Tim has a cousin (plus his wife and their girls who are almost 3 and 1) who had to evacuate their home and luckily her parents are nearby to stay with. 

Hard to imagine your life being disrupted so forcefully. Hoping the city can rebuild and bounce back - I’m sure they will!

Hannah & Preschool: Part 3

Monday was a busy Hannah day - all for good. 

At 8am we had our final Help Me Grow appointment with our coordinator and PT - the two we’ve spent the most time with. They’ve helped Hannah since she was an infant! We gave the two women a Hannah Banana shirt and a note thanking them that had photos of Hannah growing up. 


I teared up a bit saying farewell. Hopefully not the last time we see them - I promised to update them with how Hannah does in preschool. 


Which was our next appointment - 11:15 at the preschool to go over Hannah’s IEP (Individualized Education Plan). 


In the room with Tim and I were the school psychologist, director, two Help Me Grow reps, the ST (the PT and OT could not make it) and Hannah’s teacher, Ms. Booth who seems super sweet. 


Her IEP is fairly straightforward - preschool level development. PT includes learning to jump and managing stairs up and down without holding an adult’s hand. ST includes two-word phrases and expressive communication. OT includes following through with tasks like a 4-5 piece puzzle. 

Ms. Booth took us to her classroom where we saw Hannah’s name on a cubbie. That’s when I nearly started crying - ! Reality is setting in. 

Because Hannah is on an IEP, she is allowed to be picked up and dropped off by the bus at our sitter’s house (this was not an option for Nora in Kindergarten). This is incredibly helpful because I’m not sure with all the schedules we could have done anything else. She will be picked up at 8:50am and dropped off at 11:48am. I wonder how tired my little boot will be??

She’ll ride a full size bus which has 5-point harnesses in. I believe an aide rides the bus to assist kids who need help. If I remember correctly, even a typical kid has trouble getting up those huge bus steps!

I’ll come in late to work that morning to see Hannah onto the bus. I’m already anticipating bawling my eyes out - my baby!


Friday, August 18, 2017

KINDERGARTEN!

*Blink*

Kindergarten! I think we are just as excited as Nora. She loved preschool and with a broader curriculum, she’s loving it. 

Based on having two parents who work outside the home, we thankfully received all-day Kindergarten and tacked on Extended Day AM & PM. This means we drop her off around 7:30am in the cafeteria to play and eat breakfast. She knows Liam, a friend/neighbor which helps. It opens at 6:30 am! When we brought her at 7:30, there were at least 10 kids already. I’m thankful the schools offer this for parents who aren’t able to stick around for the bus schedule. 

We’re already starting the nutrition talks. She wanted Jell-O and chocolate milk for breakfast (this and the PM snack are included in fees). I told her that’s fine, but not every day. We need to make good food choices so we don’t get cavities or upset stomachs - ! 

She has a full day of  
W/Thu/Fri are Phys Ed, Art, and Music. 

I plan to join the PTA - involvement seems important to me... I think I can manage a meeting a month. 7pm meetings are a touch tricky just because we cram a lot in between 6-7:30pm at our house once we get home. 

She bounds home happy to tell us about her day. So far the morning have been great - she’s so excited she gets dressed before she leaves her room - that’s a big deal! 

None of it has made me emotional, really. I’m not one who gets emotional over the baby days. I enjoy watching my girls grow and develop. However, our sitter made a book of photos of Nora from about when Hannah was born (2 1/2) to now... After flipping through it, I did get a little choked up. That relationship is four years old and that transition is hard. We have so must trust built between our families and Alison truly cares for our girls. 

I’m glad Hannah will continue at least another year under Alison’s care. She’s a vital part of our village! 

Age 5!

Mom has no say in her attire or accessories! : )

Watch out for runny-nosed pirates!