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. 

Our First Discrimination.

It “only” took four years before we encountered what I think I consider discrimination against Hannah.

We’ve been searching for childcare for Hannah (that’s another post) and we were looking at local daycares. In-home has been great (more attention), but when your sitter or sitter’s child is sick, you have to scramble. Daycares are more reliable.

We tried Jellybean Junction in Milford and they were fairly open and willing. The director was a touch nervous about the student to teacher ratio; 14:1. Which did make Tim and I a bit nervous, too. BUT the Director was still open and willing to take Hannah in. 

We tried another option down the road, Youthland Academy. It had multiple locations in the Tri-State area. Tim spoke to the Milford Director who said she’d get back to us. The following day, the owner of the daycare, Sheila, called me and told me they could not accept Hannah. My skin started to prickle and I asked her “Why?”

She rambled for quite some time, claiming two main points: 1. That her teacher/student ration wouldn’t allow for extra eyes on Hannah and 2. That her preschool staff were under-experienced for a child with special needs. She said she was “only” a 1-star daycare and that it would be better for me to find a 2-to-3 star daycare. When she finished giving her reasons, I calmly but firmly told her it was in her best interest to get inclusive fast. Parents with children of special needs work too. 

Then I hung up the phone, shaking, and went to the bathroom at work to cry. It felt like our first true refusal based on Hannah’s diagnosis. I was so, so, mad. 

I posted this experience on our local community’s Ds Facebook page and multiple families chimed in that they had experienced similar refusals from this daycare - over the years. Unreal. 

One particular Mom who is super on top of the legal rights and policies gave me multiple organizations to file complaints - which I did. 

It’s 2019 and those with different abilities are able to work and participate. Get on board. We support those who support us.

Don’t mess with my Baby Cub. 

Supraglottoplasty

Supraglottoplasty: the removal of excess tissue in the airway.

The continuing journey of Hannah’s unexpected 2018 diagnosis...

Hannah had her surgery the Tuesday after MLK Day. It took about one hour. We met her in the ICU afterwards; she was sleeping with just some monitors on, an O2 cannula, and an IV port that was not attached to any IVs thank goodness. Dr. Shott felt optimistic about the surgery.

She was pretty peaceful and then I made the mistake of putting lip ointment on. I didn’t think it’d wake her up, but it did and she was a bear. Whoops. After some crying, she fell back asleep. I felt terrible. 

The afternoon was Hannah going in and out of sleep while some crying in between. We got some movies on and she settled a bit. She was drinking water fairly quickly afterwards... way better than the tonsillectomy. 

Tim spent the night with Hannah since I’d done the T&A overnight as well as the titration study nightmare. 

He of course did not get any sleep - how can you when nurses are in and out all night and useless monitors are going off? Argh! 

Hannah was eating by dinnertime and they were discharged super fast - out by 8am Wednesday morning! She was back at the sitter on Thursday. 

No, Hannah’s sleeping has not changed. But we will not know the “official” outcome until her next sleep study on March 15th. I still think her waking and coming into our room is behavioral or age. I’d rather try to manage that than have an unsuccessful surgery. 😕