According to a peer of mine who is a runner and has a daughter with Ds, Kayleigh Williamson isn't the first person with Ds to finish a half marathon. But she is for the Austin Half Marathon.
Kayleigh Williamson to Run Austin Half Marathon
Kayleigh Williamson Finishes Half Marathon
[photos link in the article]
Maybe Hannah will follow her Mama’s footsteps one day? : )
Monday, February 20, 2017
Friday, February 17, 2017
Lately - February
Our past two months have been a bit stressful. It seems to be easing but I don’t want to jinx us!
Tim has been juggling insurance and contractors for the damage of the felled tree on our house. Then we were told an ash tree between us and the neighbor needed to come down - with this “climate change” weather, who knows if it’ll come down in a February thunderstorm. Additionally, a tree on the OTHER side of the house is shading the home TOO much so there’s a huge moss patch which is a big bad thing (moisture!). So those two jerks are a huge financial blow.
We’ve had at least three appointments every week since the beginning of the year - as well as registering two children for new schools - !
Hannah was not herself early January and we finally took her in to discover a double ear infection. Maybe a week after finishing her antibiotic, she and Nora both started coughing - Hannah had a low grade fever for about a week and didn’t eat for three days - which is enough to send me into a tailspin. We had to cancel a handful of appointments including Hannah’s annual cardiology appointment which is now pushed to April.
I still haven’t kicked the cough and Tim isn’t feeling 100%.
One interesting event: Nora’s first professional haircut! We have a local place that sells playsets and the showroom is a huge indoor placespace for kids - very cool. Also inside is a kids’ hair salon. A friend recommended it so we tried it out.
It was... okay. The staff were a bit rough around the edges. I thought I smelled some cigarette smoke. The owner/manager [?] gentleman hovered around me a little too much for my comfort. The cut itself was okay - days later I found uneven pieces. Then Nora’s hair was sprayed with some... scent?? Like a dog who was at the groomers. The experience was a little bizarre, but Nora loved it. Not sure I can convince her to try other places...
After feeling pressure from late December into February, Aunt Stephanie was super sweet and offered to watch the girls for a few hours so Tim and I could get out alone for a bit. It was wonderful! We tried a newer Asian place in Milford that was delicious, then hit 50 West Brewery - of course. We were home by 8:30 to put the girls to bed.
Hannah’s therapies have been going well. The only struggle is self-feeding. It doesn’t matter what spoon, what dish we use - the girl just isn’t interested sometimes. She’s acting like a two-year-old. Just wants to fart around. So then I end up feeding her so she gains some weight. It’s a terrible game of balancing her own self-teaching and getting her to actually EAT.
Saw Hannah’s ophthamologist - continued patching. I guess it’s better than surgery. She has a new prescription and probably needs fitted for new Miraflexes.
Yesterday we saw ENT as a follow up from TWO ear infections ago to see if she’s still holding fluid. She certainly is. ENT and Cardiology will coordinate to do the ear tube insertion while she’s under anesthesia and also do her annual echo at the same time - ! It’ll be a long day, but better than going under twice. And minor!
Tim has been juggling insurance and contractors for the damage of the felled tree on our house. Then we were told an ash tree between us and the neighbor needed to come down - with this “climate change” weather, who knows if it’ll come down in a February thunderstorm. Additionally, a tree on the OTHER side of the house is shading the home TOO much so there’s a huge moss patch which is a big bad thing (moisture!). So those two jerks are a huge financial blow.
We’ve had at least three appointments every week since the beginning of the year - as well as registering two children for new schools - !
Hannah was not herself early January and we finally took her in to discover a double ear infection. Maybe a week after finishing her antibiotic, she and Nora both started coughing - Hannah had a low grade fever for about a week and didn’t eat for three days - which is enough to send me into a tailspin. We had to cancel a handful of appointments including Hannah’s annual cardiology appointment which is now pushed to April.
 |
| Sick toddler : ( |
I still haven’t kicked the cough and Tim isn’t feeling 100%.
One interesting event: Nora’s first professional haircut! We have a local place that sells playsets and the showroom is a huge indoor placespace for kids - very cool. Also inside is a kids’ hair salon. A friend recommended it so we tried it out.
It was... okay. The staff were a bit rough around the edges. I thought I smelled some cigarette smoke. The owner/manager [?] gentleman hovered around me a little too much for my comfort. The cut itself was okay - days later I found uneven pieces. Then Nora’s hair was sprayed with some... scent?? Like a dog who was at the groomers. The experience was a little bizarre, but Nora loved it. Not sure I can convince her to try other places...
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| Yup. “First Haircut” certificate - Age 5. Haha! |
After feeling pressure from late December into February, Aunt Stephanie was super sweet and offered to watch the girls for a few hours so Tim and I could get out alone for a bit. It was wonderful! We tried a newer Asian place in Milford that was delicious, then hit 50 West Brewery - of course. We were home by 8:30 to put the girls to bed.
Hannah’s therapies have been going well. The only struggle is self-feeding. It doesn’t matter what spoon, what dish we use - the girl just isn’t interested sometimes. She’s acting like a two-year-old. Just wants to fart around. So then I end up feeding her so she gains some weight. It’s a terrible game of balancing her own self-teaching and getting her to actually EAT.
Saw Hannah’s ophthamologist - continued patching. I guess it’s better than surgery. She has a new prescription and probably needs fitted for new Miraflexes.
Yesterday we saw ENT as a follow up from TWO ear infections ago to see if she’s still holding fluid. She certainly is. ENT and Cardiology will coordinate to do the ear tube insertion while she’s under anesthesia and also do her annual echo at the same time - ! It’ll be a long day, but better than going under twice. And minor!
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| Starting to learn to jump! Kids with low muscle tone also have low join awareness - i.e. need to LEARN to jump. |
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| Practicing shallow steps. |
Love Has No Labels
Saw this video recently and got a little misty - especially when it showed our homies with extra chromies!
Fans of Love
The Ad Council also did this amazing spot two years ago:
Love Has No Labels
Fans of Love
The Ad Council also did this amazing spot two years ago:
Love Has No Labels
Wednesday, February 15, 2017
The Licker
Therapists have suggested we let Hannah get messy - to make sure we’re engaging her senses. There are no red flags for sensory issues, it’s just an exercise to make sure she doesn’t develop them.
So a few times now I just plop some plain yogurt on her tray and let her have at it. Let me tell you - as a Type-A personality, I cringe at watching this. Because then I have to clean it all up.
I got past it for Hannah’s sake.
However, last night during our mess-fest, Hannah decided she was going to enjoy the yogurt while playing in it. At one point Ailo joined her and both were licking yogurt off the highchair.
My kids are the coolest.
So a few times now I just plop some plain yogurt on her tray and let her have at it. Let me tell you - as a Type-A personality, I cringe at watching this. Because then I have to clean it all up.
I got past it for Hannah’s sake.
However, last night during our mess-fest, Hannah decided she was going to enjoy the yogurt while playing in it. At one point Ailo joined her and both were licking yogurt off the highchair.
My kids are the coolest.
Tuesday, February 14, 2017
Where Have All The Kids With Ds Gone?
I’m glad a media outlet as mainstream as Good Housekeeping is shining light on the realities of Down syndrome.
Where Have All the Kids With Down syndrome Gone?
With the rise of prenatal testing, it’s frightening that - perhaps - due to lack of knowledge and outdated statistics, people with Down syndrome could theoretically become “extinct.” Absolutely NO medical professional should utter the words, “Best-case scenario: Your son will mop the floors at a fast food restaurant one day. Worst-case scenario: He will never feed himself.”
Unbelievable. Information provided to expectant Mothers needs to be up-to-date, accurate, and unbiased. Thankfully there are resources such as The Down syndrome Diagnosis Network that are attempting to educate medical professionals and their staff.
While I think Emily Zilcha in this article was poorly informed and made assumptions based on her own misconceived ideas of Down syndrome, her decision was hers. I wonder if she’d been more educated, would she have made a different decision? Maybe not.
The last woman, Hallie Levine, probably seems the most realistic/relatable to me; “Deep down, I was probably a narcissistic, self-absorbed person who just didn’t want a kid who was less than perfect.”
No, Down syndrome is not all rainbows and unicorns. But neither is raising a typical child. We have our challenges, but at the end of the day, we live a great life and Hannah’s quality of life feels pretty great. The resources and interventions available now are truly helping Hannah achieve more.
Raising a daughter with Ds has, and will continue, to alter my perspective of what really matters in life.
Where Have All the Kids With Down syndrome Gone?
With the rise of prenatal testing, it’s frightening that - perhaps - due to lack of knowledge and outdated statistics, people with Down syndrome could theoretically become “extinct.” Absolutely NO medical professional should utter the words, “Best-case scenario: Your son will mop the floors at a fast food restaurant one day. Worst-case scenario: He will never feed himself.”
Unbelievable. Information provided to expectant Mothers needs to be up-to-date, accurate, and unbiased. Thankfully there are resources such as The Down syndrome Diagnosis Network that are attempting to educate medical professionals and their staff.
While I think Emily Zilcha in this article was poorly informed and made assumptions based on her own misconceived ideas of Down syndrome, her decision was hers. I wonder if she’d been more educated, would she have made a different decision? Maybe not.
The last woman, Hallie Levine, probably seems the most realistic/relatable to me; “Deep down, I was probably a narcissistic, self-absorbed person who just didn’t want a kid who was less than perfect.”
No, Down syndrome is not all rainbows and unicorns. But neither is raising a typical child. We have our challenges, but at the end of the day, we live a great life and Hannah’s quality of life feels pretty great. The resources and interventions available now are truly helping Hannah achieve more.
Raising a daughter with Ds has, and will continue, to alter my perspective of what really matters in life.
Monday, January 23, 2017
Thanks Google!
I love seeing what Google celebrates with their logo illustration.
Today they are celebrating Ed Robert’s 78th birthday - he is one of the first advocates for disability rights. Google then provided a link for further education on this subject - great for everyone to learn! Acceptance, inclusion and civil rights.
It’s fascinating to read the hard work and advocacy that has been happening for decades.
Ed Roberts, the Disability Rights Movement and the ADA
It’s lengthy, but worth your time when you have it!
Today they are celebrating Ed Robert’s 78th birthday - he is one of the first advocates for disability rights. Google then provided a link for further education on this subject - great for everyone to learn! Acceptance, inclusion and civil rights.
It’s fascinating to read the hard work and advocacy that has been happening for decades.
Ed Roberts, the Disability Rights Movement and the ADA
It’s lengthy, but worth your time when you have it!
DeVos Delayed:
The vote to confirm Betsy DeVos as Sec of Education was DELAYED to Jan. 31.
Billionaire Betsy DeVos is up for confirmation as U.S. Education Secretary, and almost every educator I know has strongly expressed that she is NOT qualified to ensure quality childrens' education in this country.
Please consider CALLING [more effective than writing/petitions] one of the following Republican Senators (key in the confirmation vote) to express your opinion on the appointment. At least 3 of these need to be convinced in order to block DeVos' nomination. Don't email. Don't tweet. Don't complain on Facebook. Call them!
Then, PLEASE SHARE WIDELY:
If you live in one of the states represented below [On the Hearing Committee], PLEASE call YOUR Senator, If you don't, pick one and call him/her:
If you live in one of the states represented below [On the Hearing Committee], PLEASE call YOUR Senator, If you don't, pick one and call him/her:
Rob Portman (OH - not on the committee) 1 800 205 6446
Rand Paul (KY) 202 224 4343
Susan Collins (ME) 207 622 8414 / 202 224 2523
Lamar Alexander (TN) 615 736 5129 / 202 224 4944
Lisa Murkowski (AK) 907 586 7277 / 202 224 6665
Johnny Isakson (GA) 770 661 0999 / 202 224 3643
Orrin Hatch (UT) 801 524 4380 / 202 224 5251
Richard Burr (NC) 336 631 5125 / 202 224 3154
Michael Enzi (WY) 202 224 3424
Dr. Bill Cassidy (LA) 202 224 5824
Pat Roberts (KS) 202 224 4774
Tim Scott (SC) 202 224 6121
Lamar Alexander (TN) 615 736 5129 / 202 224 4944
Lisa Murkowski (AK) 907 586 7277 / 202 224 6665
Johnny Isakson (GA) 770 661 0999 / 202 224 3643
Orrin Hatch (UT) 801 524 4380 / 202 224 5251
Richard Burr (NC) 336 631 5125 / 202 224 3154
Michael Enzi (WY) 202 224 3424
Dr. Bill Cassidy (LA) 202 224 5824
Pat Roberts (KS) 202 224 4774
Tim Scott (SC) 202 224 6121
Wednesday, January 18, 2017
Nervous
I try to stay away from political policies on here. But after having Hannah and seeing the tapped cabinet members who are about to take their offices, I’ve been getting nervous and voicing my concerns with my state reps.
I don’t think this is a Democrat/Republican issue, but if you have a child in public school, I hope you’re paying attention to Betsy DeVos.
Betsy DeVos Hearing
9 Educators on Why They Don't Support DeVos
I don’t think this is a Democrat/Republican issue, but if you have a child in public school, I hope you’re paying attention to Betsy DeVos.
Personally, I’m pretty frightened at her utter lack of experience with public schools. Her hearing was embarrassing to watch. Maybe she’ll prove me wrong [?!]. But as a mother with a special needs child, I am NOT comfortable with her lack of understanding of IDEA as a federal civil rights law. Or that she thinks each state can decide whether to support it - ?!
If you even have a heart, I hope you agree my daughter and all kids with disabilities deserve an appropriate education. Believe it or not, they CAN contribute to our working society.
This is why I can’t sleep at night and what goes through my head on my stress-releasing runs. I shouldn’t have to be worried about getting my armor ready to battle for Hannah’s educational rights.
If you agree with me, please call Rob Portman’s office and let them know you do not approve of her. It’s very easy - I just did it last week [and will continue to]: “Hello this is _______. I’m a concerned citizen who thinks Betsy DeVos is unfit and unqualified to run this nation’s public education.” 1 800 205 6446
Sherrod Brown: 513 684 1021
Sherrod Brown: 513 684 1021
Betsy DeVos Hearing
9 Educators on Why They Don't Support DeVos
Thursday, January 12, 2017
So Much For a Boring 2017
Tuesday evening I was in the middle of making dinner when it hit me: nausea. Whoa. I literally turned off the gas range and nearly walked to the bathroom to get sick.
It passed. I finished making dinner and managed down two sweet potato corn cakes.
I had to put Nora to bed and I started getting bone-cold. I was throwing layers on and she wasn’t going down easy. Tim already had Hannah down and I mustered the strength to half-assed pack lunches and try and prep the crock pot for the next day.
The aches were creeping in.
This whole time there’s a wind storm happening outside.
I went to bed at 8:15 freezing under a tank, shirt, sweatshirt and two blankets. Aches and nausea. I tossed and turned and could not fall asleep.
Around 9:30 the wind picked up fiercely. To the point there was a brief moment I thought there was a tornado - and then: CRACK! SLAM!
Holy Sh*t.
I jumped out of bed and met Tim outside Nora’s bedroom - she was asleep and wall intact. I was pretty out of it but knew at least some large branches fell. Tim went outside with a flashlight - indeed, a tree fell against the house. Wow.
I laid in bed until at least 12:30 when I could literally feel my temperature rise back up and enough to fall asleep with some sweat.
I could not make it to work the next morning - still lethargic and slight nausea. Girls went to the sitter and I climbed into bed.
Then at 10:15am Ailo went crazy barking because a tree guy arrived to assess the damage. I also saw my phone that my sitter had been texting that she was ill. I politely stood listening to the tree guy and told him I had to run and get the girls while he got paperwork ready.
Mustered myself together, got girls from my even sicker sitter, came back and signed paperwork. Then my neighbor started hollering at me. Whom I had yet to meet - whoops. Very sweet retired couple whose red pickup was destroyed by a tree felled completely on the cab of the truck! Wow.
By the time lunch rolled around I was feeling better. At 2pm a contractor showed up to assess structural damage - thankfully Hannah was still napping.
The day ended typical which was good.
As awful as the situation was for a brief moment, I’m extremely thankful that 1. No one was harmed (Nora’s bedroom is just above all of this) and 2. The tree didn’t come through the house. It was inches from shattering that patio door and we escaped with a dent in the frame.
Thank God for home insurance.
Also - trees on your property are great and painful at the same time.
It passed. I finished making dinner and managed down two sweet potato corn cakes.
I had to put Nora to bed and I started getting bone-cold. I was throwing layers on and she wasn’t going down easy. Tim already had Hannah down and I mustered the strength to half-assed pack lunches and try and prep the crock pot for the next day.
The aches were creeping in.
This whole time there’s a wind storm happening outside.
I went to bed at 8:15 freezing under a tank, shirt, sweatshirt and two blankets. Aches and nausea. I tossed and turned and could not fall asleep.
Around 9:30 the wind picked up fiercely. To the point there was a brief moment I thought there was a tornado - and then: CRACK! SLAM!
Holy Sh*t.
I jumped out of bed and met Tim outside Nora’s bedroom - she was asleep and wall intact. I was pretty out of it but knew at least some large branches fell. Tim went outside with a flashlight - indeed, a tree fell against the house. Wow.
I laid in bed until at least 12:30 when I could literally feel my temperature rise back up and enough to fall asleep with some sweat.
I could not make it to work the next morning - still lethargic and slight nausea. Girls went to the sitter and I climbed into bed.
Then at 10:15am Ailo went crazy barking because a tree guy arrived to assess the damage. I also saw my phone that my sitter had been texting that she was ill. I politely stood listening to the tree guy and told him I had to run and get the girls while he got paperwork ready.
Mustered myself together, got girls from my even sicker sitter, came back and signed paperwork. Then my neighbor started hollering at me. Whom I had yet to meet - whoops. Very sweet retired couple whose red pickup was destroyed by a tree felled completely on the cab of the truck! Wow.
By the time lunch rolled around I was feeling better. At 2pm a contractor showed up to assess structural damage - thankfully Hannah was still napping.
The day ended typical which was good.
As awful as the situation was for a brief moment, I’m extremely thankful that 1. No one was harmed (Nora’s bedroom is just above all of this) and 2. The tree didn’t come through the house. It was inches from shattering that patio door and we escaped with a dent in the frame.
Thank God for home insurance.
Also - trees on your property are great and painful at the same time.
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| That damn gnome from college is STILL THERE. |
The Great Basement Cleanout
With over a week off, winter approaching, and... mice, Tim & I decided to do an overhaul on the basement. It’s unfinished which is good and bad. I do regret not finding a home with a finished basement. However, the storage is helpful. Maybe too helpful in that too many items were being “saved.”
We bought a ton of plastic bins because unfortunately I learned the hard way that mice can get into cardboard boxes. Yikes.
We did a great job setting items aside for a spring garage sale. A good amount for donations. And Tim did a great job of chucking a LOT of unnecessary items he’s been holding onto for no reason. Honestly, who goes back and looks at their high school or college artwork? Not me. PURGE!!
I have about two boxes of mementos from school days - mostly just photos.
We bought a ton of plastic bins because unfortunately I learned the hard way that mice can get into cardboard boxes. Yikes.
We did a great job setting items aside for a spring garage sale. A good amount for donations. And Tim did a great job of chucking a LOT of unnecessary items he’s been holding onto for no reason. Honestly, who goes back and looks at their high school or college artwork? Not me. PURGE!!
I have about two boxes of mementos from school days - mostly just photos.
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| Before Pinterest there were binders of images! |
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| Early 2000s - the best time for music. |
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| Senior braces = no teeth smile |
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| TOUGH. Tim said this is just my “everyday” face - haha! |
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| Me and Mama! 1981 before Stephanie was born. |
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| So much awesome. Fanny pack. Boat shoes. Perms. |
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| CAT SWEATER VEST. |
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| Tough Learner’s Permit. Christine, your hair is BROWN, not sandy. |
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