What I’ve Learned in 2.5 Years

When I started this blog, it was because we had just learned that our coming baby boy would have Down syndrome and I realized I didn’t know anything about it.  I wanted a place to share what I learned.

In the beginning the information came slowly and wasn’t entirely helpful.  Some things were good to learn, like why to end my habit of using the r-word in all cases (you can read my blog post about that here), or people first language like “people with disabilities” as opposed to “disabled people”.  But overall, the information didn’t serve to calm my fears because I wasn’t overwhelmingly afraid.  I knew that life is long and worry is wasteful.

I was, however, heartbroken and that is a completely normal way to feel when you first learn that your child will be different than you pictured.  Honestly, I‘m beginning to think that all parents may have to go through this moment at some point in their lives, on some scale.  That moment when you realize you cannot control, predict or plan all aspects of your child’s life.  You mourn the loss of what you didn’t even know you had planned.  The things you didn’t even realize that you just expected from them or for them.  Then you accept it and maybe find the joy in it.  And then you move forward, either with purpose and joy or simply because life never stops moving, or maybe a little of both.

The most important thing I learned before Levi was born was “he is a baby”.  No joke.  After the diagnosis, it became Down syndrome everything.  Then somewhere I read, “The most important thing to remember is, no matter what, he is just a baby, who needs love and care like any baby”.  This allowed me to put aside the diagnosis and wait to meet my baby boy.  I needed to get to know him before the diagnosis.

But then we spent 2.5 months in the hospital after he was born.  He had 3 surgeries and almost died twice.  But this blog became such a source of strength for me.  I could come here and share with friends and relatives how he was doing.  But the message spread and eventually I was getting messages from people all over the world who were praying for him.  I’ll never forget some of those stories, or those people.

When Levi came home, life became about recovery from everything we had been through over the last year or so.  Yet even then, we discovered we weren’t quite out of the valley yet and life threw a few more nasty surprises at us regarding our finances.  So I forgot my mission for this blog.  I was still just surviving.  But the things I was learning started trickling in.  Therapy and services, how to get them, how to use them, what they do, how to do them, etc.  These were on top of the self-learned lessons like how to manage having two kids under two years old, and maintain a marriage, and maybe a friendship or two.

Since then, we’ve moved to Seattle and life is good.  We love it here so much!  But the information is really pouring in now.  Levi is 2.5 years old.  In the U.S., a child who has disabilities receives Early Intervention services from birth to age 3.  At 2.5, they begin testing to see if they still qualify for services through the U.S. Education system and at 3, they enter preschool.  There is a LOT of information to sift through at this age.

I don’t feel at this point my blog would best serve as a resource for those things (*I will link my favorite resources below the pictures).  But I will share a few really important things I’ve learned.

I’ve learned that at this stage it is imperative to just to take things one small step at at time.  Sometimes it feels like all the information is just rushing at me.  But I have to learn to be selective about what information I allow my mind to take in each moment.  To-do lists are my new best friends and when I’m feeling really overwhelmed, my to-do list becomes tiny objectives like, “1-Read the email”, 2-“Type part of a draft response”.  Breaking it down to simplicity is definitely a necessity whenever I am feeling overwhelmed.

I’ve learned that I must remember to be in the moment.  I am hardly ever able to complete a task without interruption.  But I try to remember to be grateful for those interruptions, they sure are cute and all they want is a little help and attention.  I remind myself, “It will get done”.  Maybe not right now, but it will get done.

In the Age of Information, places to get more information are not lacking (*see a few below).  But the best information I get is from Levi and Jayden themselves.  They teach me new things everyday and what they have to teach me is by far the most important.

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How to take it all in

They teach me how to splash in an ankle high puddle in a way that soaks you to the knees

How to splash in an ankle high puddle in a way that soaks you to the knees

 

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How to play like brothers

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How to rock that first day of preschool

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How to play hide and go seek Levi style

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How to play hide and go seek Jayden style

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How to cry when the slide is wet

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How to be a stylish little dude

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How to cuddle (Seriously, I woke up and just found them like this)

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How to explore and experiment

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How to watch a far off train go by with your brother

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How to rest

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How to never wait for a healthy snack

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How to fly

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How to soar

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How to rock a pretty pink hat

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How to ride a truck

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How to make the most of a sunny Seattle day

*Here are a few of my favorite resources right now:

The International Down Syndrome Coalition’s Facebook 

The National Down Syndrome Society

and their Facebook Page

Inclusion for Children with Down Syndrome Facebook Group

The Down Syndrome-Autism Connection

and their Facebook Page 

For the most personalized help, find an ARC chapter in your area.  And if you’re lucky enough to be in the Rocky Mountain area of the U.S., the Rocky Mountain Down Syndrome Association is incredible. If you’re not in that area, search Yahoo Groups or MeetUp for people in your area.  Getting connected is the very best thing you can do.  Not everyone can have the same experiences or learn everything so we get together and share what we know, making us a better, smarter, more prepared group as a whole.

 

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3 Responses to What I’ve Learned in 2.5 Years

  1. Mom says:

    Lots to learn, and you all do it together!

  2. Terry L Todd says:

    Did I miss something? Did you get a diagnosis on Levi that indicates autism spectrum as well as Down Syndrome? How has that impacted his development?

    • Amanda says:

      Hey Terry! Good question! I can see how my link suggests that. But no, he hasn’t been diagnosed with autism. He does, however, share some symptoms, which can happen with DS. He also does therapy exercises that works well for autism, so a lot of times, just staying informed on autism can be really helpful for me and Levi. But mostly I put that link there for two reasons. One is because a dual diagnosis does occur and if someone finds themselves here who has a child with a dual diagnosis or suspects their child may have one, I’d like them to have the resource. And reason two is because the woman who started the organization and her family are dear friends of mine and the work they do is spectacular! =)

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