Eyes Like Sapphires

Life with Down Syndrome

Author: Farah Page 1 of 7

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.

Down Syndrome Awareness Month: Day 13

Speech. It’s our Achilles heel.
Frankie says a lot of “jargon” – meaning she babbles conversationally with excellent intonation but the “words” are essentially gibberish. It is a normal stage of speech development and is considered a precursor to language in all children.

Except it feels like we’ve been stuck in this stage for a looooooong time. Which apparently is not uncommon in children with DS and a lot of other families are feeling the same frustrations we are. Anecdotally it seems many kids with DS start talking in earnest around age 5. And according to the National Down Syndrome Society most children with DS learn to speak and will use speech as their primary means of communication.

I had a long chat with Frankie’s speech therapist yesterday. She feels we are on the right track and we do hear more words emerging from the jargon. She cites Frankie’s stubborn streak as a reason we’re not hearing much yet…she says she’s a smartie and knows a lot more than she lets on. We both feel like she has GOT to be a talker one day, because she seems to have so much to say. But as with pretty much all things DS the process will require lots of hard work and LOTS of patience.

I don’t usually ask for prayers but I’m going to need you all to pray for me when it does happen because between her and her brother my head might just explode!! ?

Down Syndrome Awareness Month: Day 12

Sometimes I catch people staring at Frankie. I mean like REALLY staring. It used to make me super uncomfortable and offended. But lately I’ve got a new motto:

Let them stare.

Because honestly what is there to see? A beautiful little girl with golden hair and eyes like a starry sky. A funny, silly 3 year old with a sense of humor all her own and an irresistible laugh to match. A child full of wonder at the world around her and the determination of a bull.

Most of all they will see she is loved. It is not love that comes from pity or a place of disappointment or consolation. It is genuine love for HER, just as she is.

Undoubtedly they will see her almond shaped eyes and the flat bridge of her nose. They will see Down syndrome. And that’s totally okay. But I hope that the longer they stare the more they will understand that all of these things coexist. Down syndrome doesn’t steal away beauty or a vibrant personality. And it certainly does not mean she is not loved.

So, let them stare. Let them learn

Down Syndrome Awareness Month: Day 11

It was only this morning that I said that being Frankie’s mama has been a revelatory experience. It has changed me from the inside out, making me more patient, more kind, more passionate. It has helped me find my voice.

I love watching this transformation happen to other people, too. I get to see moms and dads who are just a wee bit behind us on this journey, come from a place of fear and insecurity and just blossom into the most incredible advocates. They are bringing their passions together in extraordinary ways that spread awareness and education and make the world a better place for our children.

Just recently Veronica Mateo, a mother of a little girl with DS, posted in one of the groups I belong to about her husband’s new business. Reynaldo Mateo was a professional baseball player for 8 years before he got injured and according to her his passion for the game is out of this world. The birth of their daughter Sofia in 2016 was a life changing event for him and the pride that he feels for her and the DS community is so palpable that he decided to name his company T21 Bats. He says he is proud to represent the DS community in everything he is involved with and now when people ask why T21, he has an opportunity to educate people on what DS is. I am so humbled by the way he is using his unique voice to shout the worth of people with Down syndrome and to educate a population that might not have given it a second thought.
So if you’re in the market for a beautiful, high quality wooden bat, please check out T21 Bats on Facebook. Awesome business and incredible people.

Down Syndrome Awareness Month: Day 10

Before Frankie I might’ve panicked if my typical son had been placed in an inclusion classroom. I didn’t have any personal experience but everyone knows that kids with special needs take up all of the teacher’s attention and cause distractions in class, right?

Then Frankie came along and I was suddenly aware of how untrue and unfair this outlook was. She had as much right as any kid to be educated alongside her peers. I knew inclusion would help her thrive, but I still worried that other parents would never want her in their child’s classroom.

Then I saw this – according to a recent study, students who are educated alongside their disabled peers performed 15% higher in academics than students educated without their disabled peers. Further, these students are more aware of diverse styles of learning among themselves as well as their disabled peers and report a general feeling of inclusivity within their school day. They also enjoy the resources and support of special education teachers who are trained to look out for not only their academic growth but their social, emotional and behavioral wellbeing as well. In short, inclusion benefits everyone.

As for Frankie, when I dropped her off this morning, she was tackle-hugged by a classmate before she even got in the door. She adds so much more to a classroom than she takes away. 

Down Syndrome Awareness Month: Day 9

Down syndrome is not a spectrum. You can’t have a “severe case” or even “just a little bit.” Whether or not you have an extra chromosome is pretty definitive!

But how that extra chromosome affects different people is a very individual thing. There is surprisingly little information about what the 21st chromosome controls. We know generalities like people with DS are prone to low muscle tone, intellectual disabilities, certain physical features and heart defects, but the specifics vary from person to person.

There are 3 types of Down syndrome. All involve an extra copy of the 21st chromosome – Trisomy 21 denotes that it is present in all cells, while with Mosiacism it is present in a percentage of cells throughout the body. In people with Translocation, a portion of the 21st chromosome breaks off during cell division and attaches to another chromosome.

I have come to learn that it doesn’t matter one bit how any one person is affected by that extra chromosome or what kind of Down syndrome they have. Frankie’s needs are her needs no matter what, and we can best serve her by addressing her as an individual ❤

Down Syndrome Awareness Month: Day 8

So I think I’ve convinced you all over the past 3 years that Frankie and her friends are amazing and beautiful and fierce! But what are your thoughts on teens and adults with Down syndrome? I hope you’re not thinking they’re anything less than!

I mean check out these guys!!! They are gorgeous and stylish and vivacious and living their best lives!!!! They are gymnasts, models, actors, philosophers and just teens rocking the high school life. They make me so excited for Frankie’s future! I hope that you understand that when you say she is tearing down stereotypes, you must acknowledge all of these stars who have gone before her and done the real work!

Down Syndrome Awareness Month: Day 7

I’ve said before that when Frankie was born all of my dreams of the perfect little girl crumbled. It was a silly notion anyway but nothing I was feeling was measured or sensical in those early days.

Flash forward to yesterday when we had to spend a full 15 minutes in the girls toy aisle at Target. She grabbed that little princess case and made a bee line for the register the same way Tristan did with a set of construction vehicles when he was a similar age.

As much as I enjoy it, I’m not actually reveling in her girlyness. It’s just that I’m surprised and impressed at how well she knows her own mind. I think I was worried that DS meant a life of complacency or apathy. Our house was covered in cars and trains when she was born (before Minecraft insanity set in, obvs) and yet from the beginning she has chosen dolls and ballet and princesses. Point being – this girl has known what she wants from the beginning.

Now I have no doubt that her future will be filled with wants and desires and aspirations that extend beyond the Target toy aisle. And I can’t wait to watch her achieve them.

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