Eyes Like Sapphires

Life with Down Syndrome

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Strength in Mothers

I’m going to talk about me for a second…

I learned something last weekend and it goes like this:

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It’s not rocket science I guess, but it was something I needed to hear. Because if you remember when Frankie was first born, one of my first thoughts was I can’t do this, I don’t want to do this. I feel such shame reliving that, but it’s essential that I own up to it in order to see how far I’ve come and how much I’ve grown.

I have always been the type of person who gets easily frustrated by the silliest things – the wind blowing my umbrella or an unsteerable shopping cart in the grocery store. I thought for sure I’d be the worst mother, with no tolerance for toddler tantrums or wiggly babies. But I have talked Frankie through echocardiograms and retaught concepts I thought she had learned months ago and deciphered unintelligible words and gestures to make sure her wants and needs get met. Sometimes it is difficult to remain calm and focused, but it is my strength. I am Patient.

Having Frankie has made me reexamine and recognize my innate prejudices. Had I laughed at an R-word joke before? Did I worry about Tristan being in an integrated classroom? Had I made assumptions about someone based on their race or intellectual ability? Was I condescending? The answer to all of these things is Yes, but I am aware now and I work hard to check my biases and see past differences. It is hard to put a name to bad feelings within ourselves and to learn from them, but it is my strength. I am Respectful, Kind and Less Judgemental.

I don’t like conflict. I used to accept the answer I was given without question, not wanting to rock the boat. But there have been instances involving Frankie’s care – both medical and academic – where I knew the answer I was given was not in her best interest. In those instances I have had to dig up the answers I needed, no matter how many dead ends I encountered. You need confidence and faith yourself in order to pursue the truth. It is outside my comfort zone, but it is my strength. I am Persistent.

Parenting my 10 year old typical son is enjoyable. He is a good student, he is a good friend, he is determined and capable. Parenting Frankie is harder – not because she is not any and all of those things, but because the outside world needs to be told to look for those qualities within her. People don’t presume competence and we are working to change that. Shouting about her worth – sometimes literally – can be exhausting, but it is my strength. I am an Advocate.

Every day we are up against people who have not learned all of these things yet. They do not acknowledge who she is or who she can become. It is scary to challenge society’s ingrained thoughts, or to think we can change hearts and minds, but it is my strength. I am Brave.

I feel very fortunate that this girl has been able to mold me into the mother she needs and she deserves. Were these qualities always inside of me? Just waiting for a particular passion to ignite them and turn them into strengths? Either way I am grateful for the chance to become a better person and a strong mother. I am grateful I am her mother.

A Crystal Ball

I want to know how this is going to go…

Despite what I know to be true, despite everything I tell other people when they are getting ahead of themselves, despite how I say one of the greatest gifts of Down syndrome is learning to live in the moment – this thought still crosses my mind some times.

I know I can’t know. That there are a million and one scenarios that are possible. That if I’m really honest, my typical son’s future is as uncertain as my daughter’s. That the unknown is actually quite fun when you get the hang of it. And that frankly, I know that that’s life. But I still have those moments where I wish I had a crystal ball to be able to see what she’s going to be like when she grows up.

Maybe I just want some reassurance that everything is going to be okay? I want to know that in the end all these conversations about school placement and worries about speech and sleepless nights over cognitive development and all of these Am I doing enough? moments were all worth it. I want to know that it wasn’t all for naught, that in the end it all mattered.

But you know what? No one can know what results their decisions in life will yield. Will Frankie have a better future or be more successful based on any of these decisions I’m making for her now? It’s hard to imagine anything I am doing will have such an impact, and that’s why this parenting thing is so difficult. But you do what you can with your best intentions and the information you have. You close your eyes and take a deep breath and step on the gas.

I’m not a religious person but Down syndrome has taught me about faith. It’s not a religion or spiritual faith. It’s not a belief that a higher being is going to make everything okay. It’s a faith in love. It’s being content that no matter who your child turns out to be, he or she is YOUR child, the same child that you love now and will love then. It’s the knowledge that when he or she falls short of milestones, the love will take over. But it’s not a “That’s okay, I still love you anyway” thing. It’s not an overcompensating love. It’s an all encompassing love.

And that makes me realize that I do, in fact, know exactly how this is going to go…

How to Read a Progress Report without Freaking Out

We were doing great. Frankie was rocking the school thing. At nearly every school pick-up I was told, “She had a great day!” and she was the virtual mayor of the hallways. She was drawing circles like a boss, taking those stairs with alternating feet and we were even hearing a lot more speech lately. I felt like we were in a really good place.

And then the progress reports came.

Her teacher called to prepare me. “I don’t want you to panic,” she said, “I don’t feel that the testing is accurate, it relies on verbal communication and Frankie was distracted. There is one age equivalency in particular…” “Oh, I know,” I had said at the time. By now I just let these things roll off my back.

But then I sat down to read it. Page after page on how my little girl was not measuring up. Goals that were not met. Distraction. Self-directed behavior. And that age equivalency? One area had her at 9 months. She’s almost 4!  Needless to say, it didn’t roll off my back nearly as easily as I claimed it would.

Like many parents of children with disabilities, I’ve been through this a few times. And every time I’m reminded that this is a process. But I have realized there are steps that help take the edge off just a little bit.

So here is my take on how to read a progress report without freaking out:

1. Read them thoroughly.

I know it hurts, but you have to read them carefully. They will be the documents that inform the decision makers throughout your child’s educational career. They deserve your attention. Learn the lingo and what it “really” means and ask questions about what you don’t understand.

2. Feel your feelings.

It’s OK to cry, to feel sad and angry and frustrated. It is virtually impossible to separate your emotions from your child’s progress. You have a vested interest in their success from the moment they are born and we are often fiercely protective of them. Maybe even more so when your child has disabilities. In fact, I think your emotions can be a valuable spark in starting the fire necessary to sustain lifelong advocacy for your child. So give your feelings an outlet, whether it be to a partner or fellow parent or trusted friend.

3. Leave them alone.

Walk away from the reports, shove them in the drawer and forget about them for a while. Give yourself some time and distance. Remind yourself that there is a whole life outside of the world of special education and that your child’s diagnosis does not define them. Live in the world that does not revolve around therapies and special education and progress reports for as long as you need to and then revisit the reports when you’re ready.

4. Accept their validity.

It’s true that these reports only tell part of your child’s story. You may disagree with the details, but it’s important to accept that they reflect the experience that your child’s teachers and therapists have had with him or her. Maybe you feel the reports do not accurately describe your child, but unless you are working with a team that is intentionally malicious and falsifying evaluations, then these reports are a snapshot of him or her that you can learn something from.

5. Get some perspective.

Meet with your child’s teachers to get the bigger picture. Often the reports don’t detail the actual progress your child has made. They will measure your child’s success against “the norm” but not how he or she is doing according to his or her own path. Ask their teacher to tell you about your child’s strengths within the classroom. Ask about what they add to the environment. And then talk about how you both can support him or her consistently, both in school and at home.

6. Recover your passion.

After reading Frankie’s most recent reports I felt… tired. I was frustrated and exhausted thinking that all of this work we were putting in was making no difference at all. In fact, seeing as I thought we were in a good place before, I felt like the reports were a giant step backwards. I didn’t see any point in continuing to push and advocate; I felt like giving up.

It took a few days of feeling like this before I snapped out of it. But I met with her teachers and talked with some friends, who all gave me a much needed perspective. Then one day later that week, when I went to pick Frankie up from school, she ran to me with a huge smile and melted into my arms in a big hug. I was reminded that she is worth every single ounce of my effort and that she deserves to have me in her corner, fighting to clear a path toward success for her. The next week I attended an Advocacy in Education seminar and my passion was reignited.

This will undoubtedly look different for everyone. But I think it’s important to find that which reminds you that the only way is forward. Not helping your child to progress toward success is not really even an option.

7. Make a plan.

Frankie’s reports raised a red flag for me regarding her classroom placement. Speaking to her teachers made me realize we were having the same concerns. Moving forward, we have made a plan to make a few adjustments, both at home and at school, and we will observe her for a while to see if they make a difference. In the meantime, we are working on securing another placement should we decide to move her. Nothing is set in stone — I’ve learned it is so important to remain flexible.

Whatever you decide to do, remember that though they may seem hurtful at the time, progress reports are actually a valuable tool for you to discover what works best for your child and to ultimately get him or her the supports they need to thrive.

World Down Syndrome Day 2018: More Alike Than Different

Just a little something we whipped up for World Down Syndrome Day! Love these kiddos!

How Do I Love Her – Video Version

A mom friend and fellow blogger flagged up this website to me that allows you to turn your blog posts into videos. I gave it a try with this post that I had written for World Down Syndrome Day last year and really loved the way it came out. It got great response on my Facebook page and I’ve been asked to post it here. So here it is….! How Do I Love Her? Just like you love your kids

#morealikethandifferent

Down Syndrome Awareness Month: Day 30

So I know I’ve gone on about ballet class quite a bit, but bear with me. The term is coming to an end and I have to make the decision about whether or not we’re going to re-enlist in the trenches. I’ve thought a lot about what Frankie’s getting out of the class, does she enjoy it, what it means for her in the grand scheme of things…and then I realized maybe the person who is learning the most in ballet class is ME… As I’ve been watching her each Saturday morning, I’ve come to realize that she’s a very visual learner. When the teacher demonstrates something, Frankie is ace at copying and following along. When she’s TOLD to do something, she needs more time to hear it, process it and perform it (see video). She is very engaged when she is contained and the movement is small and entrenched in song and direction. When the children are encouraged to move about the room, she loses interest and strays. I’ve been concerned about how this looks to other parents, wondering if they’re attributing it to her disability and I thought maybe she wasn’t really ready for such a class. But then it occurred to me – if I don’t keep giving her opportunities to understand, she will never learn. Like any child, exposure, routine and repetition are great tools for her.

And finally, I’ve realized that inclusion means more than just having her in the room at an activity geared toward typical children. Frankly, she’s not just sitting there waiting for the class to include her. It’s more about drawing her in and engaging her.

Though we have attended classes before, this is really the first chance I’ve had to sit back and observe her in a classroom setting. I’m shocked at how much I’ve taken away from the class and excited to apply all of this to what we do at home.

Needless to say, we are in for another 10 weeks. Take all of my money, Rose Academy of Ballet!

Down Syndrome Awareness Month: Day 29

I’ve said before that I do not look too far into the future where Frankie is concerned. Try not to might be a more accurate way to put it. I don’t usually go hunting for the stories of adults with Down syndrome doing amazing things, but sometimes they just fall into my lap (thank you social media!) and I feel compelled to share and shout about them.

The original video that I saw was a few years old, but it showed a well spoken young woman named Bryann Burgess. She was then a student at University of South Carolina’s LIFE program and a certified Kindermusik teacher. I was so impressed, I googled some more and found she has since graduated from USC and is a wonderful piano and guitar player. She is just all around awesome.

Do I think Frankie is going to be a musician? Probably not…we’re not particularly musical in this house… But I kind of feel like, with a typical child, you start off with a whole realm of possibilities of what your kid can grow up to be and you cross things off as you go along and your child’s talents and interests develop. With a child with Down syndrome, I’ve found it to be the opposite. Many of us parents didn’t know all that much when we first got that diagnosis, so we started off from a place where stereotypes dictate what we believe; stereotypes which include a lot of can’ts and nevers.

Now, as I come across young adults soaring at all sorts of careers, I kind of collect their stories and file them away as “possible” and “maybe.” As she grows and as we learn, that file is expanding all the time! The future is bright!

Down Syndrome Awareness Month: Day 28

In the weeks following Frankie’s birth I had a series of encounters that gave me such peace and made me realize everything was going to be alright.

One such encounter was with the woman who evaluated Frankie for Early Intervention services. We had an instant connection as she told me, with tears in her eyes, about her own baby that had died from a broken neck during child birth. A baby that also had Down syndrome. She spent much more than her allotted time with us and when she left, I couldn’t help but hug her when she assured me that Frankie would be amazing.

A few weeks later, Frankie rolled over all on her own at 1 month old. I excitedly texted Sylvia to let her know her prediction was already coming true! She wrote back and sent me a picture of a teenage girl with Down syndrome she had been mentoring. She had just passed her driver’s test. “The sky’s the limit!” she wrote. And for the first time since Frankie was born I believed it.

I wish she could see our girl now.

Down Syndrome Awareness Month: Day 27

About half of all children with Down syndrome are born with a congenital heart defect. Most common are holes between the chambers which can range from mild to severe. Symptoms include heart failure, difficulty breathing and failure to thrive in the newborn period.

Heart surgery is often recommended before the age of 5-6 months in order to prevent lung damage, though some babies have a difficult time putting on enough weight for the surgery because of the CHD. By all accounts it is the scariest experience in the world to hand your baby over for open heart surgery, especially when their heart is about the size of a walnut, but thankfully the procedure success rates hover around 99%.

Frankie was born with a very tiny Atrioventricular Septal Defect – a small hole between the top two chambers of her heart. According to her cardiologist most everyone has this in utero but it usually closes by the time a baby is born. Sometimes it doesn’t, even in the typical population. Frankie’s ASD was seen at her first echocardiogram at 3 weeks old and we’ve been keeping an eye on it ever since. This morning’s exam showed it still hasn’t closed but the doctor said it’s so tiny it doesn’t require any intervention. He also said that if we’re curious we could come back to have it checked out in a year or two…

Um, no thanks! Because holding your toddler down for an echo is about as fun as wrestling an alligator! But it’s worth it because we are now cleared from cardio!!!

Down Syndrome Awareness Month: Day 26

Here’s a scary statistic for you – virtually 100% of people with Down syndrome will develop the pathology of Alzheimer’s in their brains by the age of 40.

Studies show that one the main genes on the 21st chromosome (which people with DS have in triplicate) controls the production of amyloid, the substance that forms the sticky plaques associated with Alzheimer’s. The overexpression of the 21st chromosome means that people with DS are the largest group of people predisposed to Alzheimer’s. The silver lining is that this makes them perfect candidates for research into the disease which also sheds light on how the brains of people with DS work.

Discoveries being made and drugs being developed are super encouraging that we are on the path to a cure. A cure that will undoubtedly benefit the lives of those with DS as well.

Downsyndromeawareness #dsam2017 #Alzheimers #downsyndrome #rocktober #rockthe21 #t21 #trisomy21 #lifewithds #morealikethandifferent #theluckyfew #nothingdownaboutit #lifeisbetterwithyou

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