​In just 7- short days my kids will go back to school.  Or at least they will be engaging in a version of school online.  They are not ready, I am not ready, and to be honest, I am not certain my District is ready.  But the truth is- no matter how much time we had, I am not sure any of us would be.  Because at the heart of all of this is, what we have to remember is, that none of us have ever done this before. 
 
Though the virtual nature of this is certainly still new, the “newness” factor is not.  As the parent of a child with Down syndrome in a time when expectations for those with Ds is ever- changing, he has been the “first” do do may things in the communities we have lived.  He has been the “first” more often than I wish were true.  It used to bother me more than I could say, and though I still don’t love it, there is a certain freedom in being part of that first round of opportunity.
 
For when we are among the first, anything is possible.  There had been no “we have tried that and we know it won’t work”.  There are more questions than there are answers and there is truth to be found for those that are committed to finding it.  There is no “hierarchy” of one person thinking they know better than another in terms of which path to take or how move love along that path as we go, based on their previous experience. There is only a destination, and there is an opportunity to discover the best way to get there, together.
 
For the first time, our system aligns with what we want for our kids.  It is not about what you know, but about what you can learn, what you can discover, and what you are willing to try.  It may not be in the location that we want it to happen, but the opportunity to be part of that discovery makes me want to jump right in, even if I have to take a deep breath and count to 10 before I do.

So this post may be a bit personal.  I typically try to avoid that unless it has a professional slant but, for today, I am going to go with it. 
 
I am an aspiring runner.  No- let’s try that again- I am a runner.  I have been a runner on- and- off for years. 
 
About ten of them ago, I committed to training to run a ½ marathon.  In the spirit of Growth Mindset- I have not yet gotten there.  I have made many attempts, even getting within five weeks of completing my training. 
 
There are many reasons why I have not yet gotten there, not the least of which is having two babies at separate times during this period does not make ½ marathon training the highest of priorities.
 
Fast forward to now, and I have been back in training for a few months, even though I have no idea when ½ marathons will be allowed again.
 
Due to current circumstances, I am running only in my community, which I have been doing for a few years now.  As part of my favorite loop, there is a hill.  This hill is not overly steep but it is long and it has been the crutch to my perfect run since I started.  I have struggled with this hill, to the point that I have used not running up it to avoid a running work- out.  I have allowed this hill to take joy from what is a joyful time for me.  I have even told some of my friends that if you see what looks like it might be a person slumped on the sidewalk along this hill that they should assume it is me, and could they please stop and get me home.
 
But today, I ran, and as part of my run, I ran up this hill.  And today, for some unknown reason the hill that I have consistently struggled with, was not intimidating, it was not hard to run, and as I ran I never once felt like I would falter.  In fact, when I got to the top of the hill I had to look back over my shoulder to make sure I had really run where I thought I had.
 
I have no idea why this hill did not pose the challenge to me today that it has every day prior.  I likely never will.  But I am going to take it.  I am going to take it and hold onto this victory with both hands. 
 
And that is what I want for you….that you can find a victory, no matter what it is about, no matter who it is about, no matter its size, and no matter from where it came, and hold on with both hands, until the next one comes along.

As the end of the year is approaching (or for some it is already here) some of us are beginning to adjust, and others are pining for what we once knew (I know I have days when I am doing a bit of both) we are receiving more and more input about how we, as parents, should be responding to input from our Educators about supports for our kids.  The purpose of this blog is not to judge or to make any indications about what should be happening, in its specific format- however I do have a few thoughts I would share.
 
What if this is it?  What If instead of this being our new temporary- this is what there is going forward?  What if we never actually can go back to the way we were before and this has forever changed the way we educate our children going forward, or at least acknowledge that this may be it for a longer than expected time or even, that it could happen again in the future. 
 
I am not saying this to scare anyone (though I have to admit this thought has kept me up at night) but to give us an opportunity to think, to consider, and to collaborate.
 
What might happen if instead of treating Distance Learning, for those who struggle to learn, as a situation that can be solved by a band-aid that can be ripped off after a few weeks, we instead realized that we have to find a new “normal”. 
 
What could we come up with if we put parents and educators together with this shared idea- that knowing what we know about this kiddo, that instead of a problem to solve we have an opportunity to create something amazing- individualized and supportive- transformative, even. 
 
Because that is what true collaboration does- it transforms what we brought to the group into something new.  When we offer our gifts and blend them with the gifts of others that we could not have previously seen- that is where the magic happens.  
 
Can we take this “new to us all” situation and turn it into an opportunity to truly partner onto this new platform and acknowledge that we need the gifts of all, in order to go forward in a way that allows our struggling learners an opportunity to succeed.
 
So find your team- invite them to consider the long-term- bring your gifts- accept the gifts of others- and make magic happen.

​How we respond to life is a choice, my friends, one of the few choices we may feel like we have so take hold, take charge, flip the script, choose how to respond, and go for it!!

For many of us, staying home, and schooling at home does not come naturally.  There is a rather large learning curve that goes along with figuring out how to navigate a "new normal" way of daily life where kids are being educated at home by parents who did not choose to educate them at home.  When you are supporting  a student who is struggling to learn, this is even more the case. 

So often I get asked the question- How do I know what to work on at home with my child who struggles to learn?  My simple answer is: whatever it is that you are doing for students for whom learning may not be a challenge.  Of course the details will look different, in many cases, but the overarching themes should be the same. 

If you are supporting Language Arts for another student, then this student should be no different.  If PE is on the agenda, then add it to everyone's schedule.  If it is a mental health day then make it so for everyone.

Instead of taking time to analyze whether or not we should be focusing on this or that, let's, instead, take that precious time to focus on what is important:

Accessibility

It is not the what we want to cover, but how we make it accessible as an opportunity to show growth, over time, that needs our time, our attention, our creativity, and our support. 

So- take the first step- streamline the "what" am I covering? and take that "saved" time to focus on the details that make this something worth focusing on, for all of our kids, especially those that struggle to learn. 

​For Sevi, social distancing is his worst nightmare.  A socially motivated kid, by nature, he is a true product of his experiences and the people who have touched his life.  The only thing better about Sevi’s smile are Sevi’s hugs, and if you are in his “in-crowd” his hugs are plentiful.
 
At first, I was not sure how this was going to go.  I mean- for a kid who is a born minimalist, who delights in sharing time and laughter with others even more than he enjoys frozen yogurt, how do you navigate a world in which you not only need to stay 6- ft apart but you have to stay home?
 
My mind started to go down the rabbit-hole of despair, and then I remembered- I have been here before.  I do not need to despair because I have lived the gratitude of receiving a diagnosis for my son in a time where technology allows things that just years ago I could not have imagined.  This has applied to his health, his education, and his dreams.  It has been a daily gratefulness that I have never forgotten. 
 
So instead of despair, I just need to remember, that we live in a time that allows us to physically isolate in our homes, without forcing us from our social connectedness. 
 
We have so very much available to us that will allow even the most social of us to get our connected- fix, and if he needs a hug- well then guess who gets to receive a few extra of those?  Not a bad place to be at all.
 
How you are staying connected these days?

In times of uncertainly and times of change it is hard to know what to say.  What do we tell our loved ones with learning challenges and communication challenges about what is going on in the world?  How do we explain the changes they are facing?
 
Though the answer will be different for everyone, I would like to encourage you to consider, that in this case, “more is more”.  I am not talking about statistics and facts of fear, but our loved ones with learning or communication challenges need to know at least the general reasons why life has changed so drastically.
 
At times like this I try to put myself in my son’s shoes.  If I was a person who had questions I could not ask, and wanted information I was not receiving- what would I want to know?  What would give me comfort?  What would help me understand?
 
Studies have confirmed that for people with limited language the quality and quantity of their verbal interactions from others decrease drastically compared with those of us who can communicate more freely.  Different studies have shared with us the knowledge that most people can understand far more than they can freely communicate about.  So- go with that. 
 
Think about what you would want to know, and at least in general terms, and know that “more is more”, because we all need to understand how we fit into our surroundings and be supported when the rules change.  So find a time to share the "why" behind the "what", in a way that our loved ones can understand and receive comfort from.  Best to you all today, and always.

As we continue to pass our days, full of change from where we thought we would be, and what we thought we might be doing it is easy to go to the negative.  OK- let’s be honest- it is easy to begin to panic, even. 
 
We are concerned, and that is understandable.  We worry about health, we worry about progress, we worry about school support, and we worry about well- being.  Insert more worries here: ___________________________
 
There is much we cannot control, and so lots to worry about- but let’s agree to collectively take progress off the table. 
 
Your child will progress, even in the face of this change.  In fact, in some ways, your child may actually progress more than they would have in their previous routine. 
 
So many times have I worried about progress.  Would my son be negatively impacted by no ESY or a change in educator?  How about when we moved or added another baby to the family?  What was the magic recipe that was allowing progress to occur and would it all stop if we changed even a small amount of one ingredient?
 
But you know what?  We have had many, many changes in our lives and lack of progress was never the reality.  In fact, if I looked closely enough and brought the truth into focus, in so many ways there was progress in places that never could have occurred had things stayed the same. 
 
Times of change give opportunities to grow.  We have to learn new things by the very nature of change occurring.  It is not always quick, and not often neatly packaged, but given time, and different support, by the very nature of who they are, and the fact that they are experiencing life day-in-and-day-out, our loved ones, even our loved one with learning challenges, will grow to levels beyond where they were before. 
 
So look closely, and give it time.  Find the growth and celebrate the progress we would never have found had we not found ourselves in a different place than we expected to be.

In my last post I mentioned that we are certainly living in uncertain times and that continues to be the case.  Daily, it seems, that we are faced with a new dose of reality, that changes the way we interact with the people in our communities, and maybe even our own families.  It is a time of uncertainty, even possibly a time of feeling overwhelmed, and of not knowing where to turn or what will happen next.
 
I have been thinking about that a lot lately.  Especially for those of us whose loved ones may face additional impacts, either to their health, or perceived loss of education- at times this just seems like too much.
 
But we can look at this another way as well.  We can dig deep and recognize that we can do this because we have done it before.
 
As a parent you will have received a pre-natal, post- natal or pre- adoption diagnosis.  As an educator, you may have known nothing about Down syndrome or autism, or whatever learning challenge your student faces daily, or maybe too much following old paradigms.  The truth is that upon joining our lives alongside one with Down syndrome or another struggling learners, we all faced unexpected challenges.  We all have been in the path of experiencing life differently than we had planned, and have learned new ways of doing things, new ways of thinking, even, and made that part of our current daily “normal”.
 
So do that again my friends.  Dig deep, back to the time when you first heard the diagnosis of Down syndrome applied to someone you would join alongside, or learned something new about someone you love, and as you do, know that this time, you’ve got this- because you have done it before, and can absolutely do it again!

​Happy World Down Syndrome Day 2020 everyone.!!! I can certainly say that we are not celebrating the way we had expected but I am sure that we are all doing what we can, in our own way.
 
Under today’s circumstances, I can’t think of a better way to celebrate this day than to officially launch Sevi’s Smile online services, as a way to support people with Down syndrome and other learning challenges, their parents and caregivers and, even in these uncertain times, their educators. 
 
I have been absolutely blessed and humbled by the response we have received on our soft launch, and cannot wait to connect with you as we take our support out into the world in a more public way.
 
Today- Sevi had been planning to speak at a local conference for families of children with various disabilities.  As we reflected on the opportunity that was before us we could not think of a more perfect way to celebrate WDSD2020. 
 
The reality is that our plans are not possible.  So much of what we face today is overwhelming and out of our control, but we are not swayed.  We are still taking the message of positivity and possibility out into the virtual world- and we hope you will join us.
 
In the meantime- let us know how you are celebrating WDSD2020.  We are using this time to make connections and reaching out to people we have not spoken to in too long and not letting another minute pass. 
 
Sending virtual hugs and encouragement to you all.