How To Navigate A Special Needs Encounter

You all know I’m a big fan of Amy Webb/Miggy and her posts and advocacy for those with disabilities. 

Her article on How to Navigate a Special Needs Encounter has been making the rounds again, on USA today even! 

I think it’s very important to read not only as a parent but could also apply to adult encounters. 

Also of note – I keep reading that the term “special needs” is not preferred by those who actually have differing needs - I know, it’s hard to keep up and know what proper language to use. I still use “special needs,” but frankly, Hannah doesn’t have special needs, her needs are just like everyone else, right? 

I found this article super eye-opening - mainly because the author is speaking with her adult peers with disabilities. 

3 Reasons to Say “Disability” instead of “Special Needs.”

Some interesting quotes:

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“Disabled people should control the conversation about their disabilities, and the language used about them, not their parents.”

“A need isn’t special if other people get to take the same thing for granted.”

“Handi-capable,” “People of all abilities,” “Different abilities,” “Differently abled,” and “special needs” were made up outside of the disabled community, by people without disabilities. 

‘Dis’ = Another Way of Doing and Being

“Disabled” meaning an ability to do or be something in another way.

“Disability” meaning an ability to do or be in another way.

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Interesting to read and important to hear from those who actually have the disabilities! 

Isn't It A Pity?

When you have 15 minutes to spare, this is a great TED Talk about how many attempts to accommodate “special needs” comes out as pity and separation. 

Isn’t It A Pity?

Hannah’s New Care

Hannah has settled in at the new sitter’s home well. 

It’s a bit more regimented and scheduled than Alison’s, but Shannon is trying to establish herself as an Early Learning Center. 

Hannah thankfully adapts very well and seems to enjoy it quite a bit! The bus picks up Hannah for school and drops her back off at their home. Shannon is great at giving me updates and sending photos - look at all of these!

Her first trial day.

Napping in her reading fort. 

Urban Axes

About two weeks ago, we had some teambuilding at work - at Urban Axes. Throw axes. Drink beer. Have fun - it really was!

We each practiced a bit and coaches stood with us to teach us techniques. Well, turns out I’m pretty good - ! I can’t even count how many bullseyes I had - more than five but less than ten? 

The guys were regularly hitting around 24-26 points and I was landing in the low 30s - yeah buddy!

Pretty proud of uncovering my hidden talent! 

It’s Nora's Month!

Nora was recognized with an “I Can...” Award for being a positive peer in her class this week! 

This is a funky panorama of a can to read it - ha!

And even bigger: Seipelt Elementary gives quarterly SOAR Awards nominated by the teachers; students who embody the traits of a Milford Eagle: Safety, Ownership, Attitude, and Respect/Responsibility. 

I received a message on my phone at work - another Mom told me Nora had been awarded by her art teacher! They livestream the school assembly on Facebook - ha! I was so proud of Nora - we try so hard to instill being a kind and loving person - so it seems it’s working 💗

Bucket Filler

Nora was on Cloud 9 Friday after school - she was recognized as a Bucket Filler by her teacher! 

“Each week students have the possibility of being recognized as a Bucket Filler. Bucket Fillers are students who say or do nice things to make others feel good. When these random acts of kindness occur, we call them Bucket Fillers. Students at Seipelt fill buckets all day, everyday, but some students go above and beyond and this recognition system allows each of these students to meet with me individually to share what they did and how it filled a bucket!”

So proud of my girl. Every morning when I drop her off I don’t say “Have a good day!” Instead, I tell her “Have a happy day! You are kind and thoughtful.” I chose to plant that belief in her head and she’s fulfilling it herself 💗

Nora’s photo with the Principal, Ms. Lewis, in this week’s school newsletter!

Community Rises Up

I’m sure many have seen this story circulating. It makes me cry with amazement that this community would put such energy into making this little girl feel included. What if ALL communities made this effort for ALL abilities? 

Neighborhood Learns ASL for Deaf 2-Year Old

School Age Friends?

I follow Heather Avis on social media. She has a well known presence in our community and is a fierce advocate. She shares everything including struggles with her children’s IEPs and a lot about social struggles of her daughter, Macy, in the 4th grade.

I’m over four years into this journey. I would say Hannah has friends - loosely. The babysitter’s kids, our friends children whom Hannah has grown up with, and a few peers in the Ds community. But we haven’t reached the age of school friends. 

It’s easy at this age with playdates, but I’m nervous for when Hannah gets older. That gap between typical and developmentally-delayed kids will grow. 

“I write this with a sense of urgency. Kids in fourth grade aren’t going to know the value of a friendship with somebody with a different ability if they do not have those friendships when they are in preschool and maintain them throughout their childhood into their teen years into their adult years. It is our job as parents to establish these relationships, to go out of our way and be intentional.”

I think in a lot of Heather’s posts, she can come off pushy, but I do agree that small children need to be exposed to kids with other abilities, else this teasing and making-fun-of will be too abundant. And that just hurts us all. 

Kids Books That Celebrate Differences

Expose Your Kids to Different Abilities

Heather Avis

Care Packages

Flu season is no joke, especially for those in the Ds community. I’ve mentioned before, we don’t take sniffles and coughs lightly around Hannah.

One of Hannah’s preschool peers is currently inpatient at Children’s recovering from the flu; her oxygen isn’t quite stabilizing. A second littler guy who we don’t know personally was admitted for flu symptoms and now is septic which is even scarier. He’s okay, but up and down with his fever and oxygen. 

Since Hannah’s friend lives here in Milford and I always see Jessica (Mom) at running races, I really wanted to give them a care package. I’ve done this twice now for other families, both in the NICU after birth. 

Here’s what I get:

• Notepad
• Pens
• Magazine
• Scented Antibac Gel
• Lotion
• Tissues
• Gum/Mints
• Snack Bars/Nuts
• Water
• Lip Balm

If the child is older, then I’ll get trinkets:

• Small book
• Activity book
• Washable Markers
• Goldfish crackers
• Small plush toy

The Moms have always been thankful. I know my experiences in the hospital can be lonely and you feel like a trapped animal. It’s the least anyone can do!

The Changing of Guards: A New Sitter

I found Alison, our current sitter, on Care.com back in August of 2013. Nora was one and a half and we were fairly new to Milford. Alison has now been helping us for five and a half years. 

I knew at some point, not only would Nora age out - which she now attends her elementary Extended Day (before and after school care), but also Hannah. I was going to tell Alison that we were aiming to get Hannah into her preschool summer camp and then the preschool Extended Day for next school year. I was a little nervous and sad to inform her.

About mid-January Alison turned the table; she was ending her in-home sitting mid-March! Oh! Didn’t see that one coming. 

Her husband had started a side business fixing leaky basements and the business has taken off quicker than they thought. Alison handles the calls, billing, etc. so her time to attend to the kids is waning. I totally understand and am very happy for them, albeit bittersweet. 

Saying “see you later” to Alison will be emotional. I had a hard time leaving Holly when Nora was 9 months! But Nora and daughter, Adalyn, are friends and hopefully will have playdates along the way. 

This proved stressful: finding new childcare in the middle of the school year. 

As I’ve mentioned in my previous post, we attempted some daycares to avoid dealing with others’ sicknesses. This proved harder than we thought with attention to Hannah, so we posted again on Care.com and I thought I’d give a shot on our neighborhood site, Nextdoor.com. 

We had a handful of responses, one woman stood out because she’d had an aunt with Down syndrome. Bingo - I had to dig further. 

We agreed to meet up on a weeknight at her home. Shannon is my age, husband works at home, three girls, ages are 11, 9 and 7 who attend another Milford elementary. She watches two brothers, ages 18mos and 3. Hannah would be the only other child in care. 

Shannon had an aunt, who has since passed at age 61, who had Down syndrome and Shannon spoke with such love about. Hannah went and played right away and made herself at home. Even Nora played with the very friendly daughters. Tim and I both felt really good leaving that evening. 

After seeing three wonderful referrals, we knew we found the next person who we trusted Hannah with. We’ll drop Hannah for two Fridays before she starts full time at Shannon’s on March 4. 

Grateful for people who are not scared off by a diagnosis.