Monday, October 29, 2012

F.A.Q.: Down syndrome

The following post is in response to this month's earlier post, dealing with Down syndrome and welcoming your questions. We are honored to be able to share the things we are learning about Down syndrome on this blog and invite you to join us in making efforts to raise awareness for the value and acceptance of individuals with Down syndrome in our culture.


Q:  Are there different degrees of Down syndrome?  Is it a diagnosis that has a "spectrum?"

A:  Down syndrome affects every child differently.  I look at this no differently than the fact that every child, regardless of chromosomal make-up, develops and learns differently.  Just as there is no test to determine what Lainey will know and be able to do at thirty years old, there is no test to determine what Nella will be able to do.  Bottom line, as always:  We take one day at a time, celebrating our children's unique growth and ways of learning and providing support in the areas where they need it.

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Q:  What day-to-day (or weekly/monthly) things do you do that have to do with Down syndrome?  Do you do therapy?  Is there a "plan?"

A:  We currently have in-home therapy once a week for physical therapy and occupational therapy.  Nella's received these therapies since she was three months old.  In O.T., we are currently working on varying play with familiar materials (taking the same toy and using it in different ways), puzzles with no picture matches (having to match shapes), lacing cards, using crayons and pencils and imitating symbol strokes (line down, line across, etc.), and beginning to use little scissors. 

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In P.T., we are working on jumping, stairs, lots of balance exercises (uneven surfaces), tricycle, ball throwing, catching, kicking, etc.  For both P.T. and O.T., I love that our therapists incorporate real life activities as much as possible.  I've walked into our kitchen before to find our O.T. and both girls in aprons, working on pouring, measuring, scooping, stirring, etc.  I am thankful for our resources--trained care-providers who support our everyday efforts with their expertise.  And I am also aware that, as parents, our role in educating our children (typical or not) and providing them experiences for their skills to evolve is the most critical element in their development.

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Q: I am curious about Nella's speech.  What does she say?  Does she talk a lot? 

A:  Again, every child develops differently and at varied paces.  While I am happy to talk about Nella's speech progression and what we do to promote it, remember that her verbal development isn't necessarily directly related to our strategies; most of it is due to genetics just as every other child's ability to do certain things is related to the intricate structures within their brains that make them who they are. If you see a child with Down syndrome who isn't as verbal, it certainly doesn't mean his/her parents aren't using speech development strategies at home.  One of the physiological traits of Down syndrome is short term functional memory which means language, listening, following instructions and understanding consequences are more challenging for our babies. When I find I need extra help in understanding these issues and how they relate to parenting Nella, I always start by asking trusted friends within the Down syndrome community who are further along on this journey.  They share with me the things that worked best with their children and direct me to other resources that can help. 

Also, I am not a speech therapist.  The things I share that I've found to be succcessful are only based on my own experience with my own kids.

Nella has recently made some noticeable strides in speech, pointing out pretty much everything she wants and using 3-4 words to describe it ("Mama, pretzels please."  "Mama, shoes on.  Walk, please."  "Lainey, come find me!").  I would estimate that she has around a 100-word vocabulary of expressive language (more for receptive) but is continually learning new words as we introduce things to her and ask her to repeat us.  We talk to her just like we talked to Lainey when she was Nella's age, describing all of our routines as we perform them, asking Nella lots of questions and giving her time to respond ("Nella, do you want to go bye-bye to Target?  What are we going to see there?  Do you want to bring your grocery cart?  Go get your shoes on, please.").  We are currently focusing on a lot of everyday tasks and giving Nella directions, inviting her to be part of the conversation.


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For example, for bedtime we'll ask her to pick out pajamas, go get her toothbrush, wash her hands, etc. and she's very good at repeating our instructions and running along to follow directions.  She's currently loving the opportunity to respond to questions with words, such as, "Nella, what pajamas do you want to wear, the pink ones or the red ones?  (Nella says "pink.")  "Oh, pink.  Good choice!" 

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We speak to Nella like we speak to Lainey.  We make jokes, we use big words and complex sentences, and we are constantly talking to our kids, even if they might not understand everything we say.  While flash cards and sit-down word instruction is fantastic for early literacy (which is important!), I find that the most important thing we can do in engaging our children in conversation is to talk, talk, talk to them and give them as many opportunities to express themselves and respond to verbal cues as possible. 

I'm quoting my dear friend, Elizabeth (physician, D.S. mama and researcher) on this issue: "Nobody can ever promise you that any sort of therapy or intervention can make your child into a super-talker. Or they can promise (some folks do, and it's usually expensive.....) but they're not telling you the truth.   Might be that you work as hard as any mama could possibly work, and your child still isn't at the level you would want them to be.  But I can promise you this:  if you DON'T talk with them, don't expose them to language and writing and music and listening, they aren't going to make progress.   End of story."

Success for us is not measured in how many words Nella can say.  Verbal development varies in so many ways in children, both with and without Down syndrome.  We have friends with children who communicate in other ways, and it is always an inspiring thing to see the ways in which parents and children lovingly communicate with each other and with the world around them, even if it isn't with words.  I am both grateful for Nella's progress and yet aware of others' circumstances and continually learning from those around us.

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Q: Our 10 month old daughter has Down syndrome, and I wonder when I should talk to our 3.5 year old son about it. I feel like he wouldn't understand it now, but I don't want him to be unprepared if someone outside our family says something insensitive to him about his sister. Any advice?

A:  Families choose to talk about Down syndrome with their children in different ways.  For me, it was important to at least give Lainey a basic age-appropriate description early on because I wanted her to know why Nella had therapists coming to work with her and why we decorated wagons and wore "Nella's Rockstar" t-shirts for the Buddy Walk.  We started with what we know--reminding Lainey that every child is different.  We talked about children we've seen or know who have wheelchairs, wear hearing aids, have peanut allergies, take medicine for asthma, etc.  We talked about all the things that make them special and unique as well as the things that make Lainey special and unique--she has blond hair, she is tall, she is really good at drawing, she has a hard time with jumproping, she knows lots of words but is still learning to read, etc. With that introduction, we told her that Nella has things that make her different too.  She has something called Down syndrome and it's part of her body and who she is.  With Down syndrome, we explained, sometimes it takes Nella a little longer to learn things and she might need extra help to do the things that come easy for Lainey.  At Lainey's age, this is a sufficient explanation and, to be honest, I don't know that Lainey will ever look back and think "I remember the day they told me about Down syndrome."  Learning about her sister's differences is a gradual process and part of Lainey's everyday life, just as learning about her own differences is or those of the people around her.  Mostly, we look for opportunities to teach all of our children about the greater theme of compassion and recognizing people for their unique abilities and character.  We do this through modeling behaviors, reading books that introduce themes of acceptance, and talking to our children when necessary about how we treat people around us.  It's such a wonderful challenge we all share in parenthood--establishing the foundation of character for the adults our children will be someday.

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Q:  I am curious about what you think about juggling politically correct terms.  When my 93-year-old grandma recently said "retarded," she didn't mean anything offensive or negative but was just using the terms she knows. How important is it to say the politically correct word and how much is about the tone/attitude being portrayed?

A:  There is a kind way to inform people about the use of the word "retarded," and there is a holier-than-thou way in which you can make an uninformed person, who just needed a little information, feel horrible.  I follow my instinct on when and how to address people when they use the word "retard" or "retarded."  While I support politically correct terminology, I've never been one to jump into conversations, constantly correcting people.  However, I do feel it is important in kindly educating people about the way the word "retarded" used loosely affects families of children with disabilities.  I'm also more sensitive to other words casually thrown around that suggest negative stereotypes, having "worn the shoes" of a family affected by a slang term.

I personally grasped my relationship with the word retarded early on, described in this post:  "...the word “retarded” comes from a Latin word that means “to make slow.” In music, a variation of the word refers to a beautiful “slowing down” of pace at the end of a composition. And, if you remember the story of the tortoise and the hare, you’ll recall who won in the end. I'm just sayin'."  The understanding of this word's true purpose and definition, and the separation of my child and who she is with any words someone might use to describe her, has helped me keep "retarded" from being too personal. With that said, when I educate people about this word, I remember that I am representing not only my own child but many others in this community. 

Note: In 2010, Rosa's Law was passed, which is a United States law that replaces the words "mental retardation" in legal literature with the term "intellectual disability." 


For more information about Down syndrome, please see a list of specific Down syndrome resources available on NDSS website HERE.

As always, thank you for wanting to know more about Down syndrome and for being part of our journey and that of many others, just by reading. 

*****

We're happy to welcome back Tea Collection as a sponsor this month.  I love this company not only for their well-made products but for their mission in using "uniting the world" as inspiration in designing their clothing.  As co-founder and chief creative officer, Emily Meyer says, "Travel opens our hearts and minds. The clothing we create at Tea transforms the foreign world into a smaller, friendlier and more familiar place. We believe that we bring a little bit of that world home to you. Everything we create - our products, images, words and ideas - is inspired by going there and being here. And by our passion for exploring different cultures. We are awed by the unique beauty and diversity of people around the world. As we celebrate and share our discoveries, it reminds us how small the world is and how alike we all are."  Can I get an Amen?

Check out Tea's current collection of Nordic-inspired designs.  All sale items are currently 20% off (until October 31st) using code TRICKORTREAT.  We love to check out Tea Collection's destination inspiration page with beautiful printable coloring activities as well (color and frame this owl print!)

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On Nella: Lunefeld Playdress (currently on sale and an extra 20% off with code TRICKORTREAT) and Cozy Rib Knit Leggings

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*****

If you're local, come join us at Fred's (on Immokalee Road in the Sam's plaza) tomorrow night. We're gonna party like it's 1999, and we're wearing costumes. As the Black Eyed Peas would say, tomorrow night's gonna be a good, good night.

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108 comments:

YeamieWaffles said...

This post has explained so much to me about Down Syndrome Kelle and it's moved me immensely too. The day to day struggles that your little girl goes through and still comes out on top of happy and high spirited is inspirational to us all.

Debbie said...

Nella is beautiful. She looks funny. She's loved.

Kylie Louis said...

Awesome, always always changes my views..she's such a cutie!

Shannon said...

What a wonderful post, Kelle. Thank you very much for sharing this information and a unique look into your family.

Kim Kush said...

We have a 3 yr old with down syndrome. When my husband, Brett, told our 2 other girls about maylee they thought the therapists came to our house bc mom didn't know how to take care of a baby!

Kim Kush said...

We have a 3 yr old with down syndrome. When my husband, Brett, told our 2 other girls about maylee they thought the therapists came to our house bc mom didn't know how to take care of a baby!

Keep Calm and Carrie On said...

As readers, we're lucky that you and your family are open to sharing your experiences and knowledge. I know that I personally have a completely different understanding of Down's syndrome thanks to your blog.

Jamie Jo said...

I love all your answers. I am a lurker, I don't think I've ever commented. I just wanted to thank you for being such a wonderful example of loving EVERY child, as a child of God. Loving them the way God made them, loving them the way they are. I have a child with a cleft lip/palate and your question you had about politically correct terms made me think about our life. I get looks everywhere we go, but I tend to "correct" people before they say anything stupid, because they will. (say something stupid) I know it is because they don't know and need educating. I try hard to not get mad at people, because really, it's strangers that say things usually, and what business is it of theirs? I always calm down my inner anger, with thinking of my son, Simeon, and how each person I tell, will make his world a little better. Sometimes people (strangers) have surprised me so much with their kindness and love and genuine "Awwww, he's so cute"

I've said too much, God bless you.

The Scott's said...

Wonderful post... Nella is such a cutie!

Caroline @ The Feminist Housewife said...

Loved reading this post and thankful for your insight and answers!

stumbling along the yellow brickroad said...

Lovely and educational blog post. I've been meaning to post this for a while - I remember once you posted about a comment one of your friend's made about Nella being a mum when she grew up because she was maternal with her dolls. I thought you'd like to hear about a lovely young lady I was honoured to work with for a few days. She is in her 20s and recently became a mother to a gorgeous baby girl. With utter pride, she expressed breast milk (hand to begin with and then with a pump) for her daughter who was in special care and had us push her over to deliver it in person. She learnt how to do the special cares for her daughter minding the tubes and wires. And to every person who stepped in to her room she smiled and gushed about her beautiful newborn. This wonderful young mum has down syndrome.

The Trousdell Five said...

I agree that Lainey will never remember the day you told her about Down Syndrome, just like I know our older daughter will never remember 'learning about' her little brothers' cerebral palsy. CP is just part of our boys, like DS is part of Nella. Just a small part of a much bigger whole, that is the important thing all of our kids will learn.

Alyssa said...

I am SO SO glad they passed that law. Mental retardation really was an awful way to describe such intellectually gifted people. They are different, yes, but so am I. WE all are. Thanks for shedding light on DS and your deal Nella. :)

Logan and Isabel said...

Wonderful post as usual. Nella is so beautiful, she shines off the screen!

Marilou said...

Thank you for book and your blogs, as I can relate in so many ways as I grew up in a "disabled" world, myself physically and my brother intellectually. Many years have passed as we are now in our mid to late 40's, but I now can relate in a different light. My husband has cerebral palsy affecting is right side, as my right side is affected due to a motor vehicle accident many years ago. Now our youngest daughter, born with IV hydrocephalus, has a shunt cerebral palsy and is limited to her vocabulary because at 27 months she maybe say 5 words but understand everything.

Josie said...

She is beautiful and this is such an important and informative post.

Mrs.T said...

Beautiful, and thank you for sharing your stories and wisdom.

Mrs. Dubose said...

Last year I found your blog when I was recovering from back surgery. I went back to the beginning and read it all the way through and then I bought and read your book, Bloom. I always knew that you were going to be a good momma to Nella because you are a good momma, period. Love goes a long way. I really love that you go to Fred's every week and if I lived near you, I would join you there.
I was a school psychologist for many years and I recently wrote a blog post about talking to group of girls who were identified as intellectually disabled (at the time, the correct diagnosis was EMR-- Educable Mentally Retarded) and explaining to them what the word retard meant. These girls with so called disabilities showed more grace and beauty than many other people who supposedly have average intelligence. I hope you and your readers enjoy my post and if you would like to follow my blog, I would be so honored.
Kelle, I really love your blog so much and admire your spirit. We could all use a little more enjoying the small things in our life. Many blessings to you and your family. I have 2 sons and ! daughter and let me tell you-- no one loves a momma like a son!

http://upontheheart.blogspot.com/2012/10/why-it-isnt-nice-to-call-people.html

Masala Chica said...

This post couldn't have been any more timely for me. One of my best friends recently gave birth to a child with Down Syndrome and I still have so many questions. This was extremely helpful and beautiful/sensitively written.

Kiran

Team Lando said...

Aw, love these sweet Nella pics. Have fun for us at fred's, we're HURRICANING here!

Lisamarie said...

This is a very nicely written post. My husband is a high school special education teach for moderate to severe disabilities and his students - all of them - are simply amazing. We grow to love each and every one of them (he has each child for all four years of high school) and all that they have to offer - which is so very very much.

Patti said...

too funny, I had just posted about the R word and then came over here to read. I agree completely with how to handle things when others use it. LOVE the photos on this, kelle. And of course love seeing our smart friend's words shared :)

2busy said...

She appears to be happy and healthy. That's all you can ask for...she is perfect.

Lou said...

I have read your blog for almost two years now and am amazed by your love, strength and action. I have never commented before but wanted to say that you are one amazing mama and this post was beautiful and so informative. Thank you xx

Bea, OT said...

I am really impressed by your thoughtful answers and beautiful words. Thank you for sharing your world with us. You make the world a brighter place!

d6cddf40-2203-11e2-8b96-000f20980440 said...

My daughter is 45 years old and did not have the support that is available now. Neither were people as aware or somewhat sensitive to her or us. She's had eggs thrown at her, kids holding her under the water at the pool, making fun of her walking home from school, graffiti spray painted on our house, names called and people wondering what was wrong with us that we had a child like her.
I don't care what term they use to describe a child with a disability. Just let them live in peace and understand the pain and agony and, yes, disappointment parents go through. I am glad to have found your site...there is so little support and none for my daughters age. I'm afraid I'm burned out. Good luck to you and bless your little one's heart.

Gina said...

As an SLP, I give you kudos on the way you described speech and language development. That was absolutely perfect.

Farmgirl Paints said...

Great information girl. Love how you take the time to address questions and shed light on down syndrome. On a side note did Nella get a new do? Those last pics of her hair are so cute. Wish I could dance it up with ya at Fred's...storms a brewin' here:/

Jen Gordon said...

Nella's expressions are priceless. That girl has joy.

Amber Ellen said...

Thank you for the information! I loved learning more about DS and Nella. You are a fabulous Mom and an amazing inspiration to me.

Both my son and I wear hearing aids and I love what you wrote about dealing with ignorant people.
Thank you for another fantastic post! :)

Cinnamon said...

I love your take on the R word. I am going to use it as my own :) Thank you

Rik said...

I don't know why, but this post made me cry...but good tears, proud tears. And yes, we do more through gentle instructing than reacting and hurting others who merely spoke in ignorance. An elderly volunteer at the hospital where I serve spoke to me after Nella's birth and in her well intentioned attempt to comfort and encourage me, actually used the archaic and offensive "M" word for individuals with Down syndrome. I had to focus on her heart and. It her words. I longed to bring her with me into my hopes for a brighter tomorrow instead of instructing her that she had used a term we find quite awful and simply hurt her and make her less likely to walk with us into our future...so I just ignored her term and referenced "individuals with Down syndrome" and went on...then later shared how I am learning so much...and later shared how I have learned new words...and later even spoke of how people "...used to use the word,,,". and hopefully gently taught a very old lady something new without leading her through shame and embarrassment. We need to enlist advocates and not push people away. Well written, Kelle. Nella has taught her Poppa much. --Proud Poppa

Jude said...

What a lovely post. Thank you so much for explaining so much.
My husband had an Uncle with Down Syndrome, whom I never met. Mother in law used to whisper about her "brother in law who's retarded..." and then, as though she hadn't already offended everyone within hearing went on to say "you know - he's a M*****".
She was equally "charming" about my son who is on the Autism Spectrum. I no longer blame her - I think it was very much a generational thing; I actually feel sorry for her that she didn't get to know her brother-in-law, and that she never learnt to properly accept her wonderful Grandson for who he is. She lost out on so much.
Thank you for sharing your lovely family.
Jude.x

Martina said...

My brother in law was born with DS - 49 years ago. Back then they told my Mother in Law that Danny would probably only live for a few years and during those years Danny's quality of life would be next to nothing. Without all the intervention that is available today, Danny thrived on his own. He was never placed in a "home" as often times happened years ago. I'm so proud of the gentle giant that Danny is. He is so compassionate and caring. He is such a blessing to our family and to be quite honest I often have to remind myself that he has DS. I quite often forget that little fact. Either way we love him like we love everyone else. He's our Special Danny. :)

Thank you for this entry. It's so beautifully written. I hope Nella grows up and lives her life with happiness and joy.

Brooke said...

Thanks for taking the time to answer my question Kelle. I want our introduction of Down syndrome to our older son to be casual and age appropriate as you described. Thanks for your advice! I appreciate it.

Angela said...

Thank you for articulating all of your answers so well. I especially appreciate your response on the question of when to talk to siblings about DS. My daughter is 3 1/2 and loves her little brother (5 months with DS) like crazy. She's a very smart girl, so we'll be sharing it with her soon. Thank you for your heart, Kelle.

Susan Martin said...

Aww...Kelle, I love ya, girl! You are changing the world. Rock on sister friend! Xo

Bex Marie said...

Hey,
I stumbled across your birth story a few weeks back and it was hard to read, I cried as I read it, it was so well written and beautiful to read in a way.. because you were real.
I love this post too and it's awesome that you have embraced your daughter for who she is, and are helping to support others that have children with down syndrome. I have to say I think your little girl is absolutely gorgeous, you can see she has a beautiful personality, and loves life.

She will do fine in life.

Bex

Laura said...

Beautiful post and a perfect segue into my weekend where I will join one of my very best friends in our THIRD Buddy Walk for her son with Team Reed's Recruits in Jacksonville! You have such talent with words and I am so glad I stumbled upon your blog so many posts ago! Keep it up :) You girls are both shining stars and it is, in no doubt, due to the love and education they receive at home! XO
Laura

Kelly S said...

Great information...and perfect, because you got a shout-out on Dear Prudence's weekly chat on Slate today! I was going to chime in, but somebody beat me to it. :) I agree though, your blog is a wonderful place to learn and laugh and love!

Life with Kaishon said...

Thank you for sharing : )

yourfriendrobin said...

It's good to recognize the heart behind the comment and educate gently. Well-meaning people may accidentally use outdated language, and it's not out of hate.

Kasey Height said...

Ugh, I love Nella so much. How can you love someone you've never even met?! I just wanna squeeeze her! <3

Time to relax said...

Lovely post, I don't normally leave comments as you normally already have hundreds and don't know if you read all posts....but wanted to say I totally hear you on the speech, my son has speech therapy weekly/fornightly (hes not down syndromes - but didnt talk for two years and just needed that extra help) and yip I talk talk talk to him repeat what he says wrong and just keep talking to him bout everything, every child is different and unquie in there own way they are all special though...My son also has glasses and needs eye patching 2 hours daily and kids are just fansitnated by how other kids are different, the kids at his kindy (age 3-5 here in NZ) always ask him why he has the plaster on his eye, and hes learnt why and just says my eye is sick and it needs this to get better, and they are happy with that.....Love your blog and I check it daily lol.... xoxox from NZ

BLOOM - Parenting Kids With Disabilities said...

Beautiful post. Especially about how verbal development is greatly influenced by genetics and not necessarily a reflection of the amount of therapy or efforts of the parents.

A great post on how to celebrate and accept our kids as unique individuals.

M said...

Thought you enjoy this picture: http://www.facebook.com/photo.php?fbid=10151114629737169&set=a.57739477168.58080.550927168&type=1 An absolutely gorgeous girl in my hometown who was crowned homecoming queen and happens to have Down syndrome, and her joy captured so beautifully!

M said...

Sorry, thought you would* enjoy that picture!! ^

Sarah said...

Beautiful! I'm a physical therapist and have a huge, huge heart for children like Nella. She is gorgeous and is blessed to be in a family with so much support and love. Thank you for sharing!

Tess said...

Hi Kelle, I have loved this post and all the others. I am a speech therapist and I couldn't agree with you more on your words about Nella's language development. It's a great message for ALL parents, whether they have children with special needs or not. Spending time with your kids and including them in the things that you do is so important! Keep it up mamma <3

Midwestgirl said...

You, your family and your open heart and mind absolutely warm my soul. Thank you for being you and being kind and brave enough to put all of you out there. It is lovely.

Stacy Monaghan said...

Thank you for sharing so much about your family - it is touching in many ways.

My daughterin grade 3 has a friend who has been in her class for the last few years who has DS and it took me ages to understand that he did. She always tell us about what he does, not what he cannot do - kids are so much smarter than we are at times!

RachelRAdams said...

you did it again! keep it up. these are the educational posts we need. : ) It makes a huge difference. you make a difference.

Betsy Wise said...

Kelle, along the topic of speech deveolopement, I've noticed in families, regardless of chromosome makeup, that the 2nd born child is slow to talking as well. Older sibling is jabbering away making it hard to get in a word, and at the same time, they can understand younger siblings grunts and motions, making speaking less important to them since their needs are being met. I nanny for a family with a 4 year old and 2 year old and the 2 year old was slow to speak. One day months after he turned 2 he just decided he was going to talk more and hasn't looked back since.

Just my input/encouragement.

kathleenbasi.com said...

Great post, and lots of good answers to questions. I'd like to piggyback on the speech question. My chromosomally-gifted girly-girl is 5 3/4 now, and not talking as well as it sounds like Nella is. However, she can read an awful lot of words and knows more academically than some of her typical classmates. We don't think about speech being a physical activity, but it is the finest of fine motor skills. Anyway, just sharing to illustrate the wide range of development, to back up Kelle's point.

Leah said...

You have such a way with words, Kelle, and you did an excellent job with answering the questions. Nella is as precious as ever! Love these pictures of her! :)

Food for Thought Linds said...

I'm a Speech-Language Pathologist, and it sounds like you're on the right path with Lainey's language. You're more than right that the best thing that you can do is to just talk to your kids. To engage them frequently in conversation. To give directions that are just slightly more advanced than what she already understands, using gestures as needed. And to produce language models that are just a bit more advanced than what she can already say, to help develop her expressive language.

I am also the mom of a 1 and 2 1/2 year old who both have a sensory processing disorder. Your quote from your friend Elizabeth really hit home to me. I've been feeling super swamped lately, trying to balance returning to part-time work while juggling OT and PT appointments, visits to the Feeding Clinic, behavioural therapy and all the like that come with having children with special needs. All the while, trying to preserve a bit of "me" time.

I can get so discouraged when one of my kids' therapists mentions that they've fallen further behind or are making gains, but not actually doing any catching up. Or are delayed in an area that had yet to be noticed. I feel like I pour my heart and soul into stimulating their different needs, be it sensory, gross or fine motor, play skills, feeding, etc, etc, etc. And when I'm told that they're still severe it makes me feel like I'm not giving enough. That if only I could stimulate them just a little bit more, then they'd be doing just a little bit better.

The truth of the matter is exactly what your friend said... that I can perhaps stimulate them more than anyone else in the world and they still might be delayed, because there is that piece of development that is individual to the child that is just what it is. And is beyond my control. I know that as a therapist and tell my clients that every day. But I have a hard time remembering itt as a mom. Thanks for reminding me :)

Monique said...

AMEN!!! to "..how small our world is and how alike we all are."

And AMEN!! to this beautiful post! Kelle, thank you for sharing such close to the heart family moments, thoughts and beliefs with all of us. Your words continue to inform and inspire!! You are one amazing Mama to all your children... Lainey, Nella and baby boy bump!!! You soak it up and dive back in for more and more...I love it!! And another big AMEN goes out to all these photos of Nella. Oh my Lord she is scrumptious...so huggable!! You have captured her beauty, her innocence, her determination, her strength, her uniqueness and her joy & happiness to just be Nella!! Beautiful!!

May laughter fill your home
Monique
PS If I lived in Naples I'd be shaking my booty at Fred's every Tuesday night and party like it's 1999!!

I work both in early intervention programming as a Play/Educational Therapist as well with children on the Autism Spectrum teaching Social Skills. I adore the children I am blessed to be with each day...they continue to teach me what really matters...

Hazel said...

That last shot of Nella totally cracks me up. Thank you for your honesty. I think everyone's experience with special needs or with normal children will be different, cause we all are.

I grew up with a brother was initially diagnosed with Autism, had low muscle tone, barely spoke, and had to have operations on his eyes to correct his cross eyed vision. I was 3 when he was born, so can't really remember being told about James' differences, I guess because I had a sister in between us maybe some of these things were obvious. I remember his eye patches as a baby. As he grew older he had to go to a PT and OT (outside of home) sometimes we went along (I think foolishly I thought one time I might get to go swimming too!) they had special Christmas parties and all the siblings were invited. He went to a special school. Mum and Dad did have to do "more" for James, but I don't remember ever being that upset or put out by that.

Later on as James got better at communication he was able to attend the same high school as me.
Sure he got teased (don't we all?), and we felt bad, but in general the school children were very tolerant of him.

I will always remember the annual sports carnival. Participation was voluntary, so James didn't have to partake if he chose not to. But he signed up to the 100m sprint, which goes past the whole school who are watching. James is by no means an athlete, with his low muscle tone he has the funniest of running styles. The rest of the heat and well and truly finished and James was running a lonely race on his own. But the principal who was the MC for the day got the whole school (500 other kids) to cheer James on to the finish line, it was quite a moment. (in fact I'm tearing up just remembering!) James responded just as he was closing in on the finish line by waving to the crowd and flashing the biggest smile! All his fellow competitors cheered him on too.

I hope one day Nella has the same moment when she realises that she is valued and appreciated by her peers for her differences, and that Lainey and her little brother are there to see it just like I was there that day for James.

J9 said...

for the record it sounds like nella is doing fantastic and falling within what i (being no specialist) think are age appropriate guidelines for pretty much everything. My third baby is a month or two younger than her i think (march '10), and he doesnt talk any better than what you describe (and there is a lot that comes out of his mouth that we dont understand), he doesnt know his colors at ALL (everything is yellow), he cannot draw a line connecting two dots (half of that because he would eat the pen/crayon!) and (unrelated to your post) he still prefers the liquid diet (aka. He'd be content drinking liquids all day and avoiding solid food which is kind of a baby-thing ). I post this not to compare him and nella, but to point out that she sounds very much like my 2 1/2 year old going on three. The only difference I notice is that she has WAY cuter clothes. :)

I really see kids so much differently now that i have my own. No kid is perfect and neither is any parent. Every kid has its challenges... and so do us grownups. Nella's might be DS... for my friends daughter it's anxiety .. for my daughter it's encopresis .... It's just part of being that little thing called a unique human. :) And that's kind of what makes us so interesting!

J9 said...

oh Hazel that is a beautiful story about your brother James!!

Win said...

Nella,

I think you are A-mazing. And I love you and want to squeeeeeeze you. You have an equally A-mazing family and you all make this world a better place.

Love, Win

Hazel said...

Thanks J9. I like what you said "no kid is perfect and neither is any parent". It's too bad we are all so quick to judge each other for every little thing we do parenting wise. Instead of having respect and admiration about how we are different.

J from Ireland said...

You inspire me in EVERY post you write. THank you for sharing.
Love love love your pictures.

Vickie said...

Hi Kelle, I love your blog, your book, and your story! You are so inspiring. I thought that you might enjoy this story. Vickie


http://m.chronicle.augusta.com/news/metro/2012-10-29/lakeside-homecoming-queen-ready-spotlight

Rachel Cummings said...

I am still a few years from having kids, but I'm saving this quote from this post for when I do have children. My biggest hope for my future kids is that they have compassion. Seriously amazing words. Thank you!

"Mostly, we look for opportunities to teach all of our children about the greater theme of compassion and recognizing people for their unique abilities and character."

Tara B said...

Great post, again. You take your responsibility seriously and I respect you for that. Way to go Kelle! I so wish I lived close and could go to Fred's with you, but I live in Colorado. Oh and Nella is adorable, but I'm SURE you already know that.

sneal_says said...

I have been a lurker for a while now. I adore your family and the love you all show. You are all charming and beautiful.

stitchingandbacon said...

I just found this blog. You are such a talented writer and photographer! I am a 27 year old younger sister to wonderful big brother with disability (it is not chromosomal, but his learning difficulties are very similar to someone with DS). My big brother lives on his own and has a couple part time jobs. He also loves kids and volunteers at an after school program a couple days a week. Sure, he is never going to do some of the things that most people would consider "normal", but he is still my big brother.

I just wanted to tell you I think your explanations to your older daughter are excellent. I never remember my parents telling me that my brother had a disability. Jeff just did the things he needed to do, just like I did. Sure, he had to go to the neurologist, but that was fun because I got to play the fun "games" with him. I never remember him being treated as "special". He was just my big brother and they raised us as I imagine any young parents would with a lot of patience and a lot of love. Thanks for your blog. It is beautiful.

Heidi Robinson said...

Today I called my dad to tell him my 3 year old daughters picture was being published in a medical book called The Gene, under the section on Kabuki Syndrome. He said, 'I thought you said this was good news. Good news would be if they found a cure' and my heart broke a little as I realized once again that not everyone in the family has been able to come to terms with Isabelle's diagnosis and accept that there is no cure - it is part of who she is, but that it is not all of who she is. She is so much more.

bel seslaf said...

Thank you for taking your time to write this, Kelle. I have no direct experience with Down Syndrome but I feel I'm learning so much. I also want to say that I really admire your open and honest approach to parenting. It's a beautiful thing to see.

Kelly Cach said...

Your dad's comment choked me up....still is. About a month ago I had a conversation with a retired nurse while Nora sat on my lap. She told me how one time she helped deliver a baby "like her" (referring to Nora) and how she was the one who had to tell the mother her baby was a "Mongloid." Ouch, that hurt. I said nothing but, "Oh," and "She's really healthy." Uh, didn't know what to say, but I knew she didn't mean anything hurtful towards us. Loved your dad's process :)

These photos are so precious, so encouraging, so full of hope for our girls! Have you addressed what specific essential oils you use for Nella (or rather, for your entire family)? Are you "allowed" to? Nora's had croup 3 times in the last year and someone just suggested essence of garlic (?) for croup.

Thanks ever so much Kelle!!!! I cherish your advice and look to Nella's accomplishments as a gauge for Nora.

Loves to you ~

6512 and growing said...

so lovely. thank you for taking the time to explain and show us the blessings in your life.

Justine said...

I love the way you constantly return to the fact that all of our children are different and how this makes the world go 'round. :) Thanks for this post.

Jennifer S said...

http://www.wrdw.com/news/schools/headlines/Disabled-Lakeside-homecoming-queen-says-crown-means-the-world-to-her-176328671.html

Made me think of Nella <3

Erin said...

you are awesome.
thanks for being such a refreshing voice for families touched by Down syndrome.

sixgunsue said...

Hi Kelle,
I'm a lurker as well, but I loved this post and really appreciate it. You see, because of your blog, my husband and I are actively engaged in preparing to adopt a child with a disability.
Our first choice is a DS child but we are not picky. If we feel drawn to a certain child, it does not matter what the challenge is, we'll welcome that child.
We are a large blended family and have experienced adoption and biological children. 3 of our children are grown and out on their own and and we still had 3 at home. But then, we suddenly found ourselves with a SURPRISE birth of our baby girl 14 mos ago. I stink at pregnancy. That's why the last 2 babies were adopted. 12 yrs ago. Yep, we haven't had baby around for a long time and we were fine with that until little Stella came along. We do not want her to grow up alone, but I can not go through another pg. So after seeing Stella take such loving care of her baby dolls..just like Nella, (she mamas so good!) we feel she would be an excellent sister to a special needs child. She has a natural nurturing instinct that I have not seen in any of my other girls. Some of my sons do have it though! Haha! Anyway, when I found your blog I went back as most of us do, and read from the beginning of when Nella was born. Because of you and your courage to share your story with all of us, I was encouraged to follow my heart and pursue yet another adoption. We are so excited about this! THANK YOU! A MILLION TIMES THANK YOU!!!
Best to you, Sue in CT. enjoying hurricane Sandy.
P.S. I also loved you Poppy's comments! You are both stellar writers.
P.P.S. just as I tried to click publish last night, we lost power. But it's on now!
we are so fortunate! Pray for the people on the coast! It's awful!!

ATucker said...

Talking to your children!! So important. I teach school and see the effects of children who don't have conversations with the members of their families. It's devastating. People need to understand the need to communicate with children. That you talk with your children as they are a part of the family is something I did with my daughter, and I feel she is much more mature and emphathatic at 19 then her peers. Keep it up Kelle!!!

Karen said...

I would like to add onto your answer to the first question, just for clarification. While it is true that there is not really a "degree of Down syndrome" there is, however, a type of Down syndrome called Mosaic Down syndrome. Not all the cells in the body contain three copies of the twenty-first chromosome. Individuals with this type of Down syndrome typically have IQs 10–30 points higher than the more common form of trisomy.

I have a daughter, Kelly, that was born on Labor Day in 1984. I love your pictures of Nella. They remind me so much of Kelly in her younger years.

Kelly has an older (27 months) sister, Erin, and a younger (20.5 months) brother, Todd. Her younger brother was one of the best gifts we received. He was her guide and mentor for great developmental leaps.

Our therapy was basically just as yours with one exception, we added basic sign language for better communication. Kelly was frustrated with the inability to communicate in language what her brain knew, including some of her needs to us. Her speech therapist taught her the signs for milk, more, cookie, thank you, please, and some others were added as she grew older.

Great job with your blog Kelle! You are a great ambassador for parents of children with special needs!

mary {figwittage} said...

Hazel and I have similar stories! Except that I have an older brother with Down syndrome (3 years older) and he never ran race, but we did graduate the same year at rival high schools :) Our last name starts with a Z, so of course we were the last to graduate from our classes. The special thing about Sheboygan South and Sheboygan North is that the two schools graduate together, outside (weather permitting) at Vollrath Bowl.

Students with special needs can attend high school until the age of 21. I was 18, he was 21 and it was so incredibly special for the two of to walk down those stairs, arm in arm together. Adam in his blue cap and gown and me in red made it down those long stairs... my parents and eldest brother were tearing up at the bottom.

I never remember a specific day that my parents told me Adam has Down syndrome and I don't remember being aware of it either. I wasn't oblivious, but I did know he was slower to learn some things. But he still learned and amazes us to this day :) I also remember going to those special Christmas pageants and Halloween parties whilst he was in elementary school at James Madison (that school had an amazing special education department.) I also remember riding along in a van with him whilst he got OT and I was used as a 'model' for other kids. I remember watching him ride horses too and wishing I could :) I never felt jealous, but maybe from time to time as it's normal for siblings to feel that way.

I've always been very sensitive to others who have disabilities and feel very protective. xx

Tori said...

Thank you for thoughtfully answering some of these sensitive questions. I read often, but rarely comment, but this post made me think. Several years ago, the priest at our past church in Memphis, TN was speaking to the congregation and addressed the usage of the word "retarded". He had helped to start a "school within a school (emersion)" for disabled children at one of our local public highschools. The majority of the students had down syndrome and I've heard people speak highly of this program. The priest was standing with one of the mommas and she was confirming that yes, indeed, "retarded" was not derogatory and in fact, the correct term. I remember not being sure how I felt about that, but for a community of "insiders" to promote its usage, who am I to say not to. As to not offend anyone, whether disabled or not, I choose to refrain from using that word.

Sarah Dunjey said...

I just have to say that Nella is beautiful and perfect. You are a lovely family :)

angi said...

I love you times 1000. Just wanted to share that.

bugeyejh said...

Nella is beautiful!

Rachel said...

I think you handled the speech question beautifully. I know in the DS community it is probably the most sensitive subject. Speech has not come easy for Sam, he is really hard to understand but he does talk a lot and I am so thankful for that! I have to be really careful not to compare him to other DS kids. I never struggle comparing him to typical peers but give me a room of DS kids and I can't stop. It is so ridiculous. I just wrote about it on my blog, http://www.make-something-beautiful.com/2012/10/pumpkin-patch-comparison.html I am trying hard not to do it but it is hard. All that to say I think you handled the speech question well and tried to discourage us from comparing b/c God knows it doesn't help. Did you guys have a buddy walk this year? Thanks for sharing as always!

Jennifer Bell said...

I just posted a similar topic on our blog entitled "A Word that Should be a Word no More." I love sharing our journey with family, friends, and others who want to share in our joy. I also love reading about others with children with Down Syndrome who are farther along and can provide encouragement for this new mommy!

http://bakerisourdreamcometrue.blogspot.com/2012/10/a-word-that-should-be-word-no-more.html

Shannon said...

Hi Kelle,
Thank you so much for posting this. Having an older sister with Down Syndrome, I always appreciate people taking the time to educate others on what it means when someone has an extra 21st. When I saw your question about telling a sibling about DS, I thought back to the day that I "found out" and it was actually a day a remember so clearly it seems like it was yesterday. Not too long ago, someone told me a story of how they told their child about DS, and I think it's really neat. I hope you don't mind me posting this. The mother bought two cake mixes of the same flavor. In one, she used the recommended amount of eggs. In the other, she added an extra. She and her child then discussed the differences and, most importantly, the similarities between the cakes. She explained that these two cakes were like her two children. Both have unique qualities, but both are equally as sweet and wonderful.
Thank you for shining such wonderful light on such a wonderful subject.
Shannon

Steadfast Ahoy! said...

I particularly liked your response to the question about telling older siblings of the disability. Your sensitivity to your child as well as all the others with individual challenges is spot on. It is no wonder (to me) your family was chose for the awesome responsibility of caring for Nella. You are teaching your children and al the rest of us to show love and compassion to others.
Rosemary

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seblazar said...

Hi Kelle,

I've been reading for sometime now, since I found your book and I just want to thank you for sharing your life with the world. While you are right in making sure others realize that your experience with Nella may not be similar to theirs, I think THE BEST way to promote true acceptance of people with disabilities is for families to share their stories. Through your blog families see that your family does things that their family does too, and little miss Nella is a DOLL who does all the things her sister does, but just might have some challenges here and there.

Sincerely,

an educator who loves reading about and is rooting for your kiddos.

Kait said...

Kelle, I read the following passage today and it spoke right to my heart. I thought of you right away. XO and Happy Halloween Hampton family!

Tonight, a lot of creatures will visit your door. Be open minded. The child who is grabbing more than one piece of candy might have poor fine motor skills. The child who takes forever to pick out one piece of candy might have motor planning issues. The child who does not say "trick or treat" or "thank you" might be painfully shy, non-verbal, or selectively mute. If you cannot understand their words, they may struggle with developmental apraxia of speech. They are thankful in their hearts and minds. The child who looks disappointed when he sees your bowl might have a life-threatening allergy. The child who isn't wearing a costume at all might have SPD or autism. Be kind, be patient, smile, pretend you understand. It's everyone's Halloween. Make a parent feel good by making a big deal of their special child. ♥

Tristan Schlegel said...

That last picture of Nell before the sponsored post is so unbelievably gorgeous! If that doesn't make you smile, I don't know what will!

Awesome post on this!

JessV said...

Wonderful post, just love your answers.
Even more, I adore these pictures of Nella. She is so, so beautiful.
xx

Liane said...

Since I started reading your blog just after Nella was born you have totally opened my eyes to the world of Down Syndrome. It has never affected me so I didn't really think about it but now I think differently.

Just the other day I was in the park with my son and there was a Mum with her 4 children, the oldest one had down syndrome and whereas before reading your blog I wouldn't have known what to say to her, I probably would have felt awkward but thanks to you, Nella and the rest of your beautiful family I had no hesitations in talking to her, laughing with her children and having my eyes opened a little bit more.

Thank you!

Mauri said...

Nella's adorable! Love this post....

Dara said...

I started reading your blog when I was "waiting out" the results of my abnormal second trimester screening.The blood work showed "elevated risk for Ds". I decided against an amino for any kind of conformation. At the time there were no diagnostic blood tests and I couldn't risk the very minimal chance of miscarriage that came with amnio. I knew I wanted my baby with or without Ds, but in all honesty I was terrified because of all the things I didn't know.

So, I waited. My husband was in Afghanistan at the time and I also had a very hyper two-year-old to take care of. I couldn't just sit around and worry. I began to do research and I came across your blog. It did wonders for me during that 5-month wait. I learned that my life would still be fantastic! I learned that if my baby needed more I would be able to give it. I learned that I wasn't a bad mother for being afraid. I learned to relax and let life unfold as it should.

Thank you for the support you gave me during that period in my life. You and your beautiful little Nella really did help me through a very difficult time. I am grateful and I am changed :)

Carolyn said...

Love your explanation of how you speak to your daughters! I am a SLP (speech pathologist) and the most important thing I tell parents is TALK TO AND WITH YOUR CHILDREN. Some parents tend to avoid talking with their beautiful little children because "they don't understand".
I love sharing your blog with parents I work with and this post is beautiful.

Happiness is... said...

Thank you Kelle for taking the time to express your experience. Your words are thoughtful and filled with purpose. And I love reading everyone's comments, especially Poppa and Hazel's.

How your life changed, but shines brighter almost 3 years later. Life is to be cherished. And your children are.

-Jennifer

lisagoestomarket said...

Thank you for speaking so openly and patiently about your experience as a mama of a baby with DS. My husband and I just got the word that our bun in the over might have Down Syndrome, and reading about your experience and seeing your beautiful girl has helped transform the unknown from scary to just another beautiful adventure, waiting to be discovered. Blessings on your beautiful family. Keep up the brave writing.

Heidi W. said...

What a beautiful little girl.

Jen said...

Just watched your bloom trailer, just beautiful! Thanks for sharing your beautiful perspective, love your blog!

Dandy said...

Your girls are lovely! I love the pictures of them in the yard. And the one of Nella with covering her face and laughing is absolutely adorable!

Jen said...

I stumbled upon your blog today from Pinterest. I am absolutely in awe of you and your sweet, sweet family. Thank you for putting yourself out there and sharing your amazing story with the world. You are very inspiring and Nella is lucky to have such a wonderful family and you are so very blessed to have her!

Jen said...

I stumbled upon your blog today from Pinterest. I am absolutely in awe of you and your sweet, sweet family. Thank you for putting yourself out there and sharing your amazing story with the world. You are very inspiring and Nella is lucky to have such a wonderful family and you are so very blessed to have her!

Piepow said...

Thanks for this post on Down Syndrome. My son was born on 25th May, and unexpectedly we were confronted with the diagnosis of Down Syndrome. A great shock... We are still trying to deal with this first shock, and with all the worries that seem so overwhelming at this moment.
One of my blog readers pointed out your blog, and I must say I admire and love the way you write about Nella - and your other children, of course. I can only try to do the same on my blog...

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marketa anna medas said...

she is adorable! her small legs...:) well, i just want to tell you, you won parents, your kid is right here in right family she choose. and the same for you, you choose her:) pray for you! iam pray for my little boy too. kids are beautiffull couse they came just to help us:) thank you!