Category Archives: Down Syndrome

Sam & Becky

Happy first day of Down Syndrome Awareness Month! Let me tell you, we are going to be celebrating here at The Mango Memoirs each and every day this month! Since day one of our Down syndrome journey, the very day our sweet Samuel was born over three years ago, we have met some incredible people. This is a world we hardly knew existed, and now we can’t imagine not being a part of it. But we remember those days before Sam’s diagnosis, back when we didn’t know a whole lot about what it meant to have three copies of the 21st chromosome. And that’s exactly why, for the next 31 days, we’ll be sharing the stories of those who have a beautiful extra chromosome. Their stories will be told by a loved one. Mom, dad, sibling, grandparent, caregiver. We’ll have photos and touching words, sometimes you’ll laugh out loud and other times you want a tissue. So make sure you bookmark us or save us in your browser, because you won’t want to miss these next 31 days as we celebrate Down Syndrome Awareness Month.

DSAM Sam

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Our first feature, on this first day of October, is our dear Samuel. But his story does not come from me. This story comes from Sam’s Auntie Becky, my sister. I had been watching her girls with my Ella the afternoon I went into labor and left Ella with her. Here she tells of the night Sam was born, May 24, 2012.

I was waiting for my sister’s call when I fell asleep- she was in labor, we didn’t know if she was having a girl or boy. My niece Ella was sleeping in my bed- I was excited to wake her up and tell her she was a big sister! Some time after I fell asleep, Angela called with baby news- “It’s a boy, his name is Samuel Thomas.” I was happy to have another nephew! But something in my sister’s tone told me there was more she wanted to say. My immediate thought- something is wrong with the baby. Then she said it, calmly, but obviously hesitant: “He’s in the NICU right now, they’re running some tests…He has Down Syndrome.”

I was surprised. But it didn’t occur to me to be sad or “grieving” (as I’ve read since that day is a natural reaction.) I was suddenly overcome with absolute love and a sense of “protection” for this boy! I cried and told my sister truthfully “That makes me SO HAPPY.”

I worked for years in homes with residents who were developmentally disabled. These folks  became some of my very favorite people- people I feel blessed to have known. They often show amazing qualities that most people I’ve met lack- and their relationships bring out so much love and humility in others. I’d always thought, I’d be happy to have a family member with “special needs.” I’d seen that my clients with involved family members could live the happiest, most fulfilled lives. I knew when Sam was born that our family would love any little one unconditionally- and as time passes I see more and more the beauty Sam brings out in the lives of everyone who knows him. Turns out he isn’t lucky to have us for a family- we’re lucky to have him.

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You can find Becky on Instagram as @beckyjolson – And yes, we do have the same last name! We both married Olsen/Olsons. We love it.

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My Little Boy on the Bus

We have a preschooler! I still have very mixed feelings about this whole deal, but Sam’s excitement when we stepped on the bus for the first time last Friday was so very good for my mama heart.

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Ella was incredibly excited for Little Brother to experience his own first day of school. Weeks before, I let her pick which backpack she thought Sam would like best. Then we had his name embroidered on it, just as we did for her first day of preschool three years ago. We tried to capture a few photos of the two of them together, but this was the best I could get. Cute kids, awful lighting. I didn’t allow enough time for us to take them outside before she jumped on her bus. Good heavens, I adore these two together!

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After Big Sister was off to school, I tried taking a few photos of Sammy man out on the deck, but he clearly just wouldn’t have it. In fact, he was so fussy I was worried he wasn’t going to want to go to school! That turned out to be far from what actually happened, though.

 

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Honestly, when we stepped out to the street and saw an enormous yellow school bus, I had to take a moment. I had mentally prepared myself to put him into a van, as I had been told would be the case. Getting him on a full-size bus seemed a far bigger deal. I was incredibly thankful to have Pete with me for the morning, as my emotions would have been a little shaky otherwise.

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We took our buddy onto the bus, met his driver and his bus aid, and got him strapped in.

I could not have asked for more lovely people to accompany him to and from school. We signed our I love yous, blew kisses, and watched him head off on his first big day! So many emotions, but mostly I was bursting with pride. My boy was doing it!

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The bus was met at his school by Ms Brenda, the teacher Sam has been working with through the school district since the same month he first arrived home from the hospital. I was so happy to have her texts throughout the morning, including this sweet photo of Sam sitting up at the table working with clay.

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We’re so very thankful for our school district and all the services they offer. They helped us arrange for Sam to a typical preschool just up the hill from us two days a week. Because of his diagnosis, they also provide bus pick-up and drop-off and they have one of his therapists (PT, OT, speech) at the school with him each day. They work with Sam in his learning environment and help his teachers with any necessary modifications. What a privilege it is for Sam to have this opportunity before we leave next summer! He’ll be soaking in social experiences that he wouldn’t have staying home with me. I certainly look forward to molding is education at home in Kenya in the future, but this is a beautiful fit for us at this time. Just imagine everything our sweet Samuel will learn this school year!

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The Return of Sammy’s Superheroes!

Get ready for year 4 of Sammy’s Superheroes! Our Samuel is truly a little superhero, which is exactly why we celebrate him at the walk every September. This is also a way to celebrate and support hundreds of other beautiful people with Down syndrome. The walk raises money for the Down Syndrome Association of Minnesota, an organization that supports families and individuals in so many awesome ways.

Sammy's Little Logo The Step Up for Down Syndrome Walk will take place on Sunday, September 27 at Como Park in St Paul. If you live close enough, we would be absolutely honored to have you join us. We will be meeting at 10:30am for a pot luck brunch under our team tent. Then there will be time to check out a few of the walk sponsors, which last year included a news helicopter and police cars as well as games and lots of tasty treats. At noon, we’ll join all the event attendees for the big walk. There are two options – one is a single mile and the other is two miles. If you’re up for it, join us in dressing in your favorite superhero costume! Otherwise, the team will be wearing the shirts from last year. If you weren’t able to join us, I may have an extra in your size. Just let me know. Otherwise, simply wear a light blue shirt. We’ll have balloons and streamers and a big ol’ sign announcing our team. Look for us at the park! For registration information, click over to our team website HERE. And then send us a note on our Facebook event page!

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You don’t have to attend the walk to be a part of our team. You can participate by making a small donation on our team website or by spreading the news of the walk. We have seen the awesome work by the Down Syndrome Association of Minnesota and we are happy to support their work!

Year 2

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Here’s a list from their website of just a few things they do:

  • Down Comforter information packets for
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Get out those costumes or make a donation and be a part of our team. With Sam as our fearless leader, we are all SAMMY’S SUPERHEROES!

 

Previous walk posts:

YEAR ONE

YEAR TWO

YEAR THREE


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Video: A Year of Sam on His Birthday!

Happy 3rd birthday to our amazing Samuel! We can’t even express how much we adore you, sweet boy!

 

 


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Video: A Chat with Sam!

I wanted to try something a little different today and have a little chat with Sam! Enjoy!

 


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Graduating at Three

A couple weeks ago, I realized we are nearing a pretty big milestone in our house. At the end of this month, our sweet Sammy baby is going to turn three. Three! Does that mean I have to stop calling him Sammy baby? Because that's what I've been calling him the last three years, and I am surely not ready to let it go. He is my darling little babe who is proving in so many ways every day that he is no longer a baby.

 

One reason turning three feels like such a milestone is because it means Sam will be graduating from his early intervention program, which is often referred to as Birth to Three. I prefer to say he is 'graduating' rather than 'aging out,' a phrase often used in this situation. But I feel like the phrase 'aging out' has some ugly stuff associated with it, and there is nothing ugly about what our Samuel has accomplished in the last three years. He has worked regularly with a teacher, a physical therapist, an occupational therapist, and a speech therapist at different times since he came home from the hospital in June 2012. All of these resources have been provided at no cost to us through the school district. They even come to the house! However, the day Sam turns three, he will leave the Birth to Three program and enter a program for older kids in school. I just can't wrap my head around that, though. He's still my baby!

In preparation for moving into the next program, we've been busy with lots of in-home appointments with his therapists. Yesterday, we had a visit from his occupational therapist. To be honest, though, this was the first time we met her! Sam has pretty much been a rock star with his fine motor skills since day one, so we haven't done any occupational therapy through the school district. We do, however, have regular sessions with his physical therapist, and that evaluation was last week. He is growing by leaps and bounds and is almost constantly trying new things. He's crawling everywhere, including backwards, and pulling up on lots of furniture. It won't be much longer and our little guy will be standing on his own and taking his first steps!! That will be an incredibly emotional day for us all, I am sure. Next week we will meet with our speech therapist through the school district and conclude the following week with a meeting to create his IEP – an Individualized Education Program.

As a teacher, I frequently worked with students had IEPs, especially when I was teaching reading to high school students in Owatonna. They are very detailed plans mapping out an individual's goals in lots of parts of a student's life. Some are fairly short while others are quite long and detailed. It's just not really something I imagined needing to do with one of my own children, so it's a little odd to think ahead and know I will be working with Sam's teachers in a couple weeks to create one as the parent, not the teacher.

Preparing for Sam's IEP meeting and upcoming graduation, I am thankful for two things. First, I'm incredibly thankful for my teaching background. I know some, not all, of the important things we need to focus on as we prepare Sam for school. Also, IEPs are not new to me, and I can easily navigate through the education jargon used during these planning meetings. I have many friends who have not been in such a situation, but instead found themselves cornered and uncomfortable. Most teachers wouldn't intentionally do that to a parent, but it can still be a little overwhelming for parents who aren't familiar with the way these things are often handled.

The second thing I am thankful for in this process is the fact that we will likely not be in the States when Sam starts kindergarten. We hope to move just before Sam reaches that point, at which time I will fully take over his education. I will have the freedom to personally individualize his everyday learning activities to fit his specific needs. It's the dream of many teachers, really. Being able to determine exactly what a student needs and tailor the curriculum to such needs is not something I ever got to do while teaching in a typical classroom. There were far too many students and an individual personality and educational needs to go with each! But I will be able to do just that as soon as we begin homeschooling in Kenya.

Though I'm looking forward to homeschooling, one thing Pete & I are pretty excited to do is send Sam to a typical preschool this fall. We're still determining which school it will be, but sweet Samuel will certainly be going to school two or three mornings a week! Can you imagine? He's going to be so crazy adorable all dressed up for school. It will be so good for him to attend preschool with a group of kids his age, all learning to socialize and follow directions and sit in a circle for story time. I don't push those skills aside as invaluable. They are incredibly important, and I'm very happy he'll have the opportunity to learn alongside new school friends!

 

Through these transitions, Sam will continue to see his physical and speech therapists downtown each week. He thoroughly enjoys his time with them and has been making tremendous growth. This kid really does have big, exciting things ahead!

 


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