Sisters hanging out. Jennifer and April (26)
Family, Siblings, Uncategorized

About Down Syndrome from a Woman with Down Syndrome

I woke up this morning and started a long Facebook post on what World Down Syndrome Day means to me. Then the site crashed and those words disappeared before they posted.

I have many, many thoughts on Down syndrome. However, my sister April shared her thoughts on Down syndrome and with her permission I want to share them with you.

“Happy National Down Syndrome Day! I was born with Down Syndrome. It’s a very special gift. Sometimes it’s very hard to understand so I learn some new things in life. My dad helps me to learn working on the way up on goals to help me with my language. Sometimes with coming to words I cannot say them the right way.

Also my boyfriend Joel he has Down Syndrome too. He is still learning too. It takes sometime working on talk each other. To take turns talking back and forth – sometime is very hard for him. We can fix our words around trying to talk better.

The way life works: it’s very hard at first to our baby steps and learn very easy. We are not perfect. Things get in the way, getting upsetting a lot, and our fighting back and forth. It is not getting our way.  We need to work on being nice each other to have a better relationship.

I need to work on my words and my language to get better in life. That is hard. So we need put this behind us.

Sometime Down Syndrome is very hard. It can be hard in life to have a child with Down Syndrome, to raise children with special needs. It’s time to learn and make it happen. Just be happy with your kids.

Thank you Mom and Dad to raised me with Down Syndrome just like, to be a part. Be proud of yourself. It’s a gift you cannot take back. To keep it the way. You are special.

Everyone out there with Down Syndrome – you are special. Who cares what people think about us? If they don’t like it, leave it! They are thinking about themselves, but you are special…”

***********************

I’ve edited for ease of reading as April posted to Facebook using her iPhone. Edits were also with her permission. Below is a screen shot of her original post.

April WDSD

Thank you April for sharing about your Down syndrome diagnosis. You are a beautiful, interesting, proud woman with Down syndrome. I love you very much and, “If they don’t like it, leave it!”

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Family, Parent Resources, Siblings, Uncategorized

Growing Up and Thankful

For the last nine years my husband, our two sons, and I have lived about 2 miles down the road from my parents and three youngest siblings. Like in many households, growth is measured in height. When I was younger we were measured on the door frame leading to the basement, but over the last decade we’ve measured growth by “matching.” This means, when we gather together my brother Jacob says, “Let’s match!” Then two people are placed back-to-back and the size comparison commences.

I’ve watched my oldest grow before my very eyes. Here are a few “matches” with Jacob and my son from the past year.

He finally passed up his uncle. Jacob (l) is 23 and H (r) is 11. #downsyndromeadoption
#brother #son #theluckyfew

A photo posted by Jennifer Bekins (@jmbuf99) on

Uncle Jacob is about to get passed! #downsyndromeadoption #theluckyfew

A photo posted by Jennifer Bekins (@jmbuf99) on

Son & brother. Someone is going to outgrow his uncle soon! #downsyndrome #adoption #adultsibling

A photo posted by Jennifer Bekins (@jmbuf99) on

Jacob is my brother through adoption and I am very, very thankful for him. That said, his birth parents are not tall people and our son is in the 95% percentile for height. At newly 11, Louis* is over 5 feet tall. Still, it won’t stop Jacob from matching. He loves to see how tall his nephew is getting and gave him a high-5 last night when Louis finally passed him in height.

This Thanksgiving I am grateful for Jacob. He has become a good friend in addition to my brother. He is kind, thoughtful, and a really good listener. Just when you think he isn’t paying attention he makes a comment that blows your expectations away. This year he has helped me around the house as I’ve rehabbed a broken foot and then just because…life. Everyone needs a guy like Jacob in their lives.

Who are you thankful for this year? Feel free to share in the comments!

 

*My son’s name is changed for online protection as a minor.

 

 

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Parent Resources, Uncategorized

Resources from the Down Syndome Diagnosis Network 1st Annual Rockin’ Mom Retreat

On Saturday, September 12th I had the privilege to speak at the 1st Annual Down Syndrome Diagnosis Network Rockin’ Mom Retreat in Minneapolis, Minnesota. Unlike other conferences focused on parent education, this one was all about nurturing mothers who shared a common bond – a child born with Down syndrome.

Attribution: Ellen Snow

Attribution: Ellen Snow

While I do not have a child of my own with Down syndrome, three of my 5 siblings do. My husband Peter and I have two sons and our oldest was diagnosed 5 years ago with Tourette syndrome. I’ve also had the honor of listening to hundreds of diagnosis stories from the many families I’ve met while practicing as a speech-language pathologist (SLP). My morning session blended my experience as a sibling, mother, and professional as I shared the very personal ways I grew and changed because of my son’s diagnosis.

The following links are resources/voices/supports I’ve either benefited from myself, used in my professional practice, or generally found useful.*

Abundant Mama – I cannot sing the praises of author Shawn Fink enough. She is a calm and encouraging voice when life feels chaotic. I’ve completed her Rise and Shine program which helps mothers intentionally think about self-care before the rest of the family is awake. (Yes, I’m a morning person. If you’re a night-owl or have a new baby, you may want to avoid this challenge.)

Taking Care of Your Marriage – Six months into my son’s diagnosis I had a huge wake-up call. My husband gently brought to my attention that I’d spent the six months post-diagnosis “doing” and “fixing”… but our relationship was crumbling to pieces. With love, patience, and many conversations we made things work again. In starting down the path of a child’s diagnosis, sometimes we neglect those closest to us. Communicating openly with our loved-ones about what we are feeling, needing, and/or thinking about is at times a struggle. However, the alternative, shutting out the ones who love us the most, prohibits us from moving forward together.

One Word New Year – The One Word New Year is an alternative to the traditional resolution. Instead, each person chooses a word that speaks to them to use as a mantra or intention through the year. I wrote about choosing the word NOURISH in 2014 and the inspiration it provided.

WP_20140107_003The Fulfillment Pyramid – Paralleling the One Word New Year, life coach Rachel Cole helps identify everyday practices that create a well-nurtured life and encourages writing them down in a pyramid or hierarchy. I filled my own pyramid and placed it on our fireplace mantel as a daily reminder to nourish my heart, body, and mind.

It Takes Two to Talk – This research-based language program is aimed at increasing communication between parent and child. As an SLP I firmly believe that getting to know your child is the most important thing a parent can do. ITTT teaches parents how to engage their child in such a way that helps him understand language and then use it when he is ready.

The Quiet Struggle – This article in Working Mother examines ways mothers of children with special needs consider the benefit of self-care.

DSDN I Run 4, 5k Attribution: Cory Dahlkamp

DSDN I Run 4, 5k Attribution: Cory Dahlkamp

Heart Strides – As a runner who has fully experienced the mental health benefits of hitting the pavement, this organization speaks to me! Heart Strides mission is, “to support Moms during a time when they are least likely to make their health a priority. To achieve this mission, we provide new running shoes to Moms caring for children with a critical/chronic illness or a special need.”

What helped me find my balance after our son’s diagnosis may not help you. I love reading, running, yoga, and quiet mornings. Each of these things helped me process and heal after feeling like my heart was shattered.

There are many ways to provide self-care. Do you have an online resource that’s spoken to your Mama heart since your little one’s diagnosis? If so, please share in the comments!

*Disclosure: I’ve received nothing to endorse any of these sites. The viewpoints expressed here, and in the sites themselves, are not intended to treat or diagnose. They are provided for informational purposes only.

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Speech & Language, Therapy Tools

Do I Buy the (Fill in the Blank) Program? Evaluating at Home Speech Programs/Products

Today I had three separate parents reach out for my opinion about a specific program making the rounds on social media discussion threads. I’m not going to name the program because I honestly haven’t used it. I do have concerns after looking into it because the program follows a fairly predictable pattern: inflated claims, weak research base, and “works for all children” mantra. It’s not a new story.

I’ve been there professionally:

Should I make this product a part of my therapy toolkit?

I’ve been there personally:

Will this help my child? I’ll do anything to help my child.

How are families supposed to weed through what works and doesn’t work? The very first thing to do is take time to look over the program with a critical eye. This isn’t personal, it’s fair. Do not get pressured by companies, therapists, or other parents to buy a product. Ask questions:

  1. Is it too good to be true? One technique cannot possibly be good for all children or all disorders. It’s more likely that the treatment is not as effective as claimed. I illustrated this once when presenting by displaying two pictures of a little girl with DS side-by-side (with parent permission). The first picture her tongue protrudes. The second picture her tongue is in her mouth, lips closed together. The technique? Nothing. Just an instant later with the same camera. You can’t believe everything you see.
  2. Has it caught a lot of attention online? View this as: proceed with caution. Just because someone claims a treatment works online, in the popular press (like a parenting magazine), or TV show doesn’t mean it’s going to work for your child. Remember several of years ago when a child with Autism was shown using an iPad with a specific type of app? Do you know how many families came in to our clinic requesting that app? It’s a great app. Unfortunately, it’s not usually the best fit for children with DS.
  3. What’s the research? Case studies and outdated articles (nothing completed in the last 5-10 years supporting effectiveness) are reasons to hold off on a purchase. Remember – Evidence comes from peer-reviewed journals where researchers discuss their studies. Self-published books, articles, or trade magazines (Advance) should not included as evidence a product works.
  4. Does the website or advertisement use pseudo-scientific jargon AKA words meant to sound scientific. Be aware that most treatments/products/programs won’t sound absurd. They are well marketed and use terms to make customers (that’s what you are) believe claims. Be wary of the following terms as it relates to specific products or programs: anecdotal evidence (“In my own practice…, my child starting speaking after using X”), expert opinion, authority, guru, testimonial, etc. While these terms can be convincing at first, they should lead you to…more questions. Don’t despair AND don’t end your search here!
  5. What happens if it doesn’t work? Unfortunately I’ve seen companies (or other parents sold on the product) claim that if your child doesn’t make progress it’s because you need to use it longer (spend more money) or it wasn’t implemented correctly (you did the program wrong). I find this type of blaming to do nothing but cause more guilt and shift focus from the real possibility – the program wasn’t effective for your child.

I know this is a lot to digest. In 2013 I made a worksheet for parents to use as they figure out which programs are worth their investment of time and money.  You can download it here: worksheet.

Ultimately, the decision to use a specific treatment is up to you. Even if you find out it is beneficial for children with DS, that doesn’t mean you have to use it. Keep in mind that any program has to fit within the boundaries of your family in terms of:

  • Cost – Do not, I repeat, do not break the bank to purchase a product(s)
  • Duration – How long the program is needed?
  • Intensity – How frequently is the product used?
  • Reality – Are you ready for the commitment now?  What barriers exist that may prevent you from following through with the program? If not now, could you manage in 6 months?

Whatever you do, do not buy into a product or program out of guilt or desperation. It’s not worth it. Weighing your options wisely will give you peace of mind now and in the future.

References & Helpful Links

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Elementary, Family, Jr. & Sr. High, Parent Resources, Siblings, Speech & Language, Therapy Activities, Uncategorized

Happy Valentine’s Day (Not)! From Your Sister

Originally published on 2/14/2011. Update includes new photo of my beautiful sister, April. **

Sisters hanging out. Jennifer and April (26)

Sisters hanging out. Jennifer and April (26)

This year we received a LOT of Valentines. I don’t remember getting this many before. Last week my husband Pete was out of town presenting at a conference. He returned home last night, took one look at our mantel filled to the edges with cards and asked, “Who are all of these from?” Well – grandparents mostly, and my sister. I handed him April’s card, “Read this. It’s from my sister.” A smile emerged across his face.

April and I have a very competitive (loving, and sisterly) relationship. Inside the card was a hand-written note encouraging me to eat Valentine’s Day candy. Why? Because I will gain weight, lose our ongoing weight-loss challenge, and she will forever reign supreme as the “Biggest Loser.”

April’s sense of humor is expressed perfectly in the card she picked out, purchased, addressed, and mailed herself. It’s one of the funniest cards she has ever sent to me. (Click on the pictures to enlarge and read)

cardFront

cardInside

 

 

 

 

 

 

 

Language is so much more than vocabulary. It is more than following directions. It’s telling jokes, knowing when your older brother is being a jerk and not paying you a compliment, and figuring out how to irk your sister in just a few sentences.

So how in the world did April go from a little girl with Down syndrome in speech therapy to young woman using a card to push her sister’s buttons? How did she learn these kinds of language skills?

  1. Listening to stories. Our Dad read children’s novels to us in his “Library Lady” voice (see #2).
  2. Lots of exposure to humor. Just meet our father and you’ll understand.
  3. Three older siblings. And if older sibs are good for anything, it’s sarcasm.
  4. Direct teaching of more complicated concepts… This meant hard work with my mom, teachers, and therapists…Similes, metaphors, figures of speech, etc.
  5. Self-determination. She’s always wanted to keep up with us, as a child and as an adult.

So where do we start with our child?

Picture books are good at introducing common figures of speech. The following books do a nice job at illustrating what speech-language pathologists consider more advanced language concepts:

As your child gets into later elementary school, read stories together as a family that include humor and problem solving such as,

If your child finds something funny, talk about it. Explain what you find humorous. A great time to do this is during TV commercials. This provides a model and framework for their answers later when you ask, “What’s so funny?” And most importantly – remember to laugh at their knock-knock jokes. Somehow life feels a little less complicated when we can laugh together.

My sister April, 2015

My sister April, 2015

** Thanks to Sarah and Carleigh of the Down Syndrome Guild of Greater Kansas City, April will receive a Hug-in-a-Mug as her Valentine’s Day treat this year!

 

 

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