Therathoughts - Start here

Therapy can be overwhelming. One of the best pieces of advice I have been given by another [EXTRA]ordinary Mom is to try and work it into your everyday life. Sometimes that can be done and other times, you have to be a little bit more purposeful in incorporating your therapy. In this section, I want to offer some of the ways I work on encorporating therapy in our everday lives and also how I make time for the more purposeful therapy. These are my Therathoughts!

Before I start adding my Therathoughts, I'll review our therapy plan. Right now, Wyatt receives Physical and Speech therapy through Cincinnati Children's Hospital and Medical Center. He gets a unique style of dual therapy in the same hour, where both the PT and the SLP are working with him at the same time. It's worked well for us thus far (and we will continue with this plan until it doesn't work well for us). He also see an Early Interventionist (read: early childhood teacher) once a month. So really, there is nothing too over the top or challenging with our schedule. No more than that of a typical child's crazy sports schedule or extra-curricular activity schedule. It's just that we started all this before he was one year old...not school aged.

Finally, I also want YOU to share your therathoughts! We are always looking at new ideas and ways to work on certian skills. So, please feel free to add in your ideas and tips on any one of the blog entries here. You may be helping another [EXTRA]ordinary Mom who is struggling with finding the right therapy modification or itdea for their child!

Thanks and I hope you find this useful!

January Mom of the Month: Meet Missy

Christmas season wreaked havoc on our family. EVERYONE was sick. Which meant, I got so very behind on a million things, including my Blog. I was supposed to have this Mom be the December Mom of the Month, but, alas, it didn't happen.

So without further ado, I bring you....

The January Mom of the Month: Meet Missy!

First Name:  Missy (Melissa as her formal introduction), a co-leader for the Eastside Mom's Group and Playgroup

Children

Vivianne is my 13 year old.  She is in 7^th grade at St. Ursula Villa.  She gets great grades and is in the Cincinnati Children’s Choir’s Con Brio group.  She is a sci-fi geek, loves Dr. Who, Les Miserable, and anything related to science. Vivianne is left-handed.

[On a personal note, V is awesome with kids and migrates to Wyatt anytime she is around him!]

Lilianne is 7 (8 on December 21). She is a 2^nd grader at Ayer Elementary school. She is very social, and loves to be outdoors on the monkey bars or with her friends. Lilianne has curly hair.

Violette is 5 years old. She is in Kindergarten. She loves Spongebob, Brave, drawing (and coloring, and practicing her letters), Walter and the Muppets. Violette has Down syndrome.

Do you work or volunteer?   

I work full time for Gardner Business Media in Newtown. I have the privilege of working with my dad, my brother, and my three cousins, along with a wonderful extended work family.  We have media brands (think magazines, websites and in person events) in the coolest industries – manufacturing.  The individuals who use our products are the people who make the equipment that allows us to have all of the nice things in the world – medical devices, energy, airplanes, electronic devices, breast pumps (yes, Medela has subscribers to our magazines,) cars, etc..

How many years have you been involved with the Eastside or Extraordinary Friends Mom’s group?   

I think I went to my first playgroup about 6 weeks after Violette was born. I was scared out of my wits.  I remember looking at all of the “Down syndrome Awareness” ribbons on the back of the car outside.  UGH.  I didn’t know if I was going into a bunch of depressed, sad, crying women, or what it would be like (I think I was picturing a sad support group where people talked about how hard their lives were.) I scrambled my courage up, took Violette out of her car seat and said “Well, Miss. Violette – let’s go meet your people!”  Violette was too little to “play,” of course, but I got so much out of it. I remember meeting Kristin, and Lisa Arnold.  All I wanted to do was stare at the kids – just watch them. I was totally tongue tied. I remember watching Sophia Arnold and saying “She seems so “high functioning””  Lisa’s response is something I’ll never forget – she said, very kindly – that she really didn’t like that phrase because it really didn’t mean anything to her. Sophia did very well, but so did many of her other friends with Down syndrome, and wasn’t a good descriptor of all of the strengths and weaknesses that her child had.  She gave me a lot to think about. Everyone was so friendly, and kind. It was a very happy, safe place to be.  I felt like I was finally someplace where I could see life where I’d move away from my fears about her diagnosis.

Why you like being a part of this group?   

See my answer above. I have made friends with a much wider group of people who I adore.  I don’t feel alone with Violette’s diagnosis. My typical children get to see that having a sibling with Down syndrome isn’t unusual. I also like that someday when Violette is an adult I will have many friends who will be comfortable talking about and collaborating with on issues related to being an adult – housing, social life, work.  I think we are all stronger for each other! (My personal top 12 list for participating in your local group: http://yomammamamma.blogspot.com/2010/11/top-12-reasons-you-should-participate.html)  Oh, plus we have so much fun and go so many great places!

Best advice for new parents of a child with T21:  

 I have pretty much everything on my blog on that subject:  http://yomammamamma.blogspot.com/2011/05/my-favorite-posts-for-new-moms-with.html

[Missy has an amazing Blog. Really. Read it, like, now.]

Greatest joy in having a child with T21:   

Violette is a really funny, fun person. She loves adventures, and always has a funny look at things. We laugh so much with her.  I enjoy just hearing the next thing that is going to come out of her mouth.  She’s had a few classics, like “Nice try, Captain Loser” to her father, and “Mommy, you a SASSYPANTS.” Also love watching her eat ice cream.  And touching her smooth smooth skin.  And looking at her perfect eyebrows.

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?   

I think I am fascinated right now –at this moment - with the differences in actually living with a person with an “intellectual disability” vs. what I thought (feared) originally.  In my life prior to Violette, I think I thought of ID as something of a tragedy, both for the person who had it and the people who live with that person.  Now it seems like a small part of the person that is Violette, and I don’t find those weaknesses any more tragic than those of my other children (or my husband or me.)  She has likes, dislikes, gets mad, is happy, is loving, just like the rest of us.  Living with Violette has helped me grow, and expanded what I value.  I live with 4 other people who have a wide range of gifts and weaknesses (and I certainly have my own share of both.)  The differences I see within my family have stretched me. I think a lot about words, and how we use them, and how we see ourselves. I’ve thought a lot about communication, and that you don’t have to speak well to communicate well. I’ve learned that my children don’t have to have a life like mine to be happy.

Favorite Therapy Trick/Tool:  

I asked Jawanda Mast, Mom of Rachel in this wonderful video - https://www.youtube.com/watch?feature=player_embedded&v=5M--xOyGUX4), what her secret was to having Rachel be so amazing (and Rachel is very awesome!)  Was it a therapy? A supplement? What was it?  Her answer was “Inclusion, Inclusion, inclusion.  We take her with us everywhere; she does everything we do.  She’s been in a typical classroom.”  That’s pretty much what we have done as well.  I also think that this article is the best one I’ve read on the things that can really cause issues with individuals with Ds. It says it is about behavior, but it is really about much more than that. It is dense with information, but has probably guided me as much in Violette’s early years and learning as anything I have seen (and I’m a research geek, so that is saying a lot!): http://www.down-syndrome.org/reviews/2076/

Random question: What’s your favorite College memory?  

I had a great time in college, but I have to say being at The Snook hotel in Sanibel over Spring Break when I was in college with my BFF’s Anne, Alex, Becki, Shelly and Tracey was probably the best. We drove Shelly’s mom’s van down, stayed with 6 of us in a room built for 4.  Didn’t count on a tile floor to sleep on at night, lol, so we ended up splitting time on the van floor.  Probably the only time in my life I was tan.  All we did was laugh for a week. Also we had to stay awake coming home overnight, so I forced the other 5 to learn our college fight song and toast.  They are always very thankful for that night every time we have a reunion and our group is the only one who knows those songs, lol!

If you feel like it’s not too personal, can you share your diagnosis story?

Check out Missy's diagnosis story at the link below.  

http://yomammamamma.blogspot.com/2010/01/little-history-of-my-pregnancy-with.html

[FROM ME]
Thank you, Missy for being such an strong leader and for all you do for the Eastside Mom's group! Missy is also a co-leader/moderator for the babycenter.com Down Syndrome Pregnancy Board (click HERE for the link) as well as the creator of the Down 21 Moms (Lose It!) Weight loss Facebook Page for Moms of kids with Down Syndrome.  She is a rock and a great wealth of information (and pretty freakin' fun, too!)

Missy with two of her three daughters: Lilianne (top) and Violette (bottom)

Christmas Hope

As Christmas draws nearer, I can't help but be overwhelmed with many emotions and thoughts. The journey we have been on the last year has been a whirlwind. To think that this time last year I had just buried my father, was going to start a new job on the tail end of finishing graduate school, and Wyatt wasn't even sitting up yet on his own.

Now, a year later, so much has changed. Wyatt is near walking, I'm working in a district that I will, hopefully be in for the long run and I've come to feel peaceful regarding my father's passing. And as I want to write all these happy, encouraging things today, I want to really be honest. I have been back and forth feeling hopeful about things lately. I have always been hopeful overall, but sometimes life is just overwhelming. I'm overwhelmed. I need some Christmas hope.

I know we are relatively stable now in our jobs and finances - things are tight, but not unmanageable - so what could I possibly need to feel hopeful about? I think we all have those moments of maybe not feeling hopeless, but hope lacking. It's that feeling at the end of a hard day where you sit down, sigh and feel a little defeated. Eventhough we've come a long way, I still sometimes see that mountain in front of me. I really hope Wyatt walks soon. I really hope I get better at my job. I really hope my husband succeeds at his new job. I really hope we can get out of this house sooner than later and I really, really hope I get the honor of having another baby someday. And with all that said, I really, really, really hope I can also learn to be present more in each and every day!

I'm not looking for a pitty party here, just a little sprinkle of Christmas hope.

The magic of Christmas and the joy that the birth of Jesus brings every year seems to come at just the right time. We all get so busy, so stressed, so over run with responsibilities and the rush of the end of the year. I think that the end of the year makes us think about all that we have not done yet and what we hope to do next year. Every Christmas, for me is almost a reset button. I get all worried, all distressed, then the celebration of the birth of the Christ child just seems to wash it all away. I'm ready for that moment now. I'm ready for rejuvenation. I'm ready for that peace, that joy and that hope the Christmas celebration brings!

Home

We go to Crossroads Community Church. It's considered a "mega" church, but it feels much smaller to me. I really love  it there and so does Josh and the kids. Recently, they started a church-wide series and study about Home. It has really got me thinking.

Our study book starts with this quote:

"What if it were possible to feel completely at Home, no matter where you were? What if you could always feel understood, valuable, protected and loved - like a child who is treasured? What if you could let down your guard, get recharged, find rest and be filled with bravery and hope? And what if you could experience that place right now, right here - and every single day from now on? No matter where you are right now, you can.

Wow. What a thought. Each time I read it, I get a little choked up.

When I think about what it feels like to be home, I'm transported back to my childhood, to my family home. I have to be honest: it was ideallyic. Partly because I was a little shielded by the "real world" becuase of not being so "connected" as kids are today, but mostly because I had a fantastic family who always made me feel safe, taken care of, loved and secure. We had woods in which to play, a pony in our back yard, my grandparents living behind us and a dinner bell to call us home when it was time to call it a day. My parents were married for 40 years (and lived on the same property since they got married) before my Dad died; my grandparents married a whoipping 67 years before Grandma passed away.

Norman, where were you when we needed a family portrait?!

I call it my abnormally normal childhood. I reconize that I am in the minority. I don't tell you this to boast or brag (although I'm admittedly immeasureably proud to have come from this family). But I say it because I have great feelings of inadequacy sometimes.

How can I ever live up to this for my own kids?!!?

I live in a smaller townhome, that needs more cleaning and fixing than I have time or resources. I have a 10 x 10 back yard for my kids...and there in no pony in sight. My mother, the only grandparent, lives 30 minutes on the other side of the city. I do not have a dinner bell, and it would likely freak the neighbors out if I did. We will probably move a number of times before we are ever able to settle into a more long-term house.

So with all this, how do I create Home for my family? When I really started to think about it. I noticed that, not only was I focusing on all the things I didn't have or didn't have control over, I was also focusing on all the actual THINGS. I pondered: did the security I felt as a child come from the Pony, or the woods or even the dinner bell? NO! Those are all things that were just plesant tangible reminders of the joy and happiness I felt as a kid.

I reread the quote from our book and realized: I WAS TREASURED! Not only by my parents and family, but on a level I also knew I was treasured by GOD as a child!

I want to be sure that my kids feel the same level of saftey, care, love and security that I did. I want them to feel equally (or even more) TREASURED! That doesn't mean that I have to live on a farm and have all the things I did as a kid. I can provide my children the gift of feeling treasured through my actions, love and examples; not just through physical things. I always have known that things don't buy happiness, but for some reason, this was na Oprah "ah-ha" moment for me. Those more tangible things may come for our kids, as we regain control of our finances after Grad school and a 100K medical bill (the latter of which is thankfully nearly gone thanks to insurance and the Bureau for Children with Medical Handicaps). Because I do want them to benefit from enjoying some things in life. But even if the things don't come, I can still show them how treasured they are!

Eventhough I will (hopefully) not be living in my current home in 20 or 40 years, I can still make a beautiful Home for my children.

I visited my Mom this past weekend. Mom and I were talking about how surreal it is sometimes for me to see my own children at her house. I get emotional about it sometimes because it makes me feel so happy. I'm thrilled that my kids get to experience that home like I did. They will have some of the same memories of playing there that I do. However, in thinking about all these things, I realized that the home is not the same: Dad is gone, the neighbors have changed, the property is smaller and the pony has long been put out to pasture. But it still feels like home because I am surrounded by the peace of God and the treasure of what is my family. And I think that is the most important part.

I am Home there, not because of what things were there, but because we were a family.

So, all things considered, now I'll try and relax and work on building my family Home, no matter where I am or what I have. We can do lots of things in our house to support our kids in feeling treasured, like reading stories, playing under tents made from bedsheets, going to a Reds game together in the cheap seats, playing in the snow, baking cookies, playing at the park or just simply eating dinner together. Above all, my parets gave me time and experiences, not that cost a forturne financially, but that were ultimately priceless in meaning.

This, I feel like I can certainly live up to. And no matter what your family looks like, what you have or where you are, you can do this, too. Teach your children what it's like to be treasured so that they can treasure others as well. If we all made each other feel treasured - no matter our gifts and abilities are - what a beautiful world that would be!

Ahhhhh.....HOME.

Meet Tika

I have met so many [EXTRA]ordinary Friends over the past 20 moths! (Hard to believe Wyatt is that old now!) I want you all to meet them, too! So I'm going to feature an [EXTRA]ordinary Mom each month (or at least try!

First up is one of our fearless leaders of the Cincinnati Eastside Mom's group, Tika. I sent her a list of questions and here is her story:

First Name: Tika

Children: Leightyn (3) (Ds) and Bayli (9 months)

Do you work or volunteer? IF yes, what do you do (besides being a great Mom!)? 

I work from home (or the pool, zoo, aquarium, or wherever else me and the kids might be) doing the filing, paperwork, and answering the phones for our online business. I also serve on the Board of Directors at the DSAGC and head the Eastside Playgroup.

How many years have you been involved with the Eastside or Extrordinary Friends Mom’s group? 

I begged Martha (our Early Matters Coordinator for the DSAGC) to start the Eastside group after moving here from Columbus in 2009. We had a Mom’s dinner group there and a small group that met once a month with speakers and socials for the families. We did not have any other family or friends here locally so this is something I really wanted for us. Melissa Skavlem and I started the group in 2010 and our first meeting was in Feb. of that year! Over two years later and we are still going strong. This group is my baby and I could not be prouder of what it has grown to be.

Why you like being a part of this group? 

All of the best information I have ever been given about Down syndrome has come from other families! Now that we are almost 4 years (hard to believe my baby will be 4!!) into this journey I love being able to share what I have learned with the families who have just started their journey. Like I mentioned we do not have family in town and this group has become my family. We have made many life long friends by being a part of this group.

Best advice for new parents of a child with T21: 

BREATHE!!!! The most important thing you can do for your new baby is love them, everything else will come in time. The future can be scary even in the best of circumstances but especially when you have a baby with special needs. Just focus on today and live in this moment! You will soon see that you are stronger than you ever knew you could be. Your child will teach you so much more than you can ever teach them so just hang on and enjoy the ride; the ups, the downs, and all the in betweens!

Greatest joy in having a child with T21: 

The amazing connection that you have with other families who have a child with Ds. There is something about that extra chromosome that allows us to make an instant connection and fosters the beginning of lifelong friendships. Leightyn is the light of my life and has taught me to celebrate every accomplishment and to live in the moment! If the world could only see things through Leightyn’s eyes it would be a much better place. She greets EVERYONE with a smile, wave, and usually a hug too! Her hugs are the best thing in this entire world!!!

What is one thing you’ve learned personally from your journey that you would like to share with other [EXTRA]ordinary Friends?

It is easy to feel like you are not doing enough for your child. With all of the doctors, appointments, therapy, etc. we can all get overwhelmed at times. What your child needs most is your love and if you are giving them that then they will be just fine. Your child will reach their milestones when they are good and ready and not a second sooner so try not to put pressure on them or yourselves. That sweet moment will come in time so sit back and wait (I know easier said then done) and be ready to clap, scream, hug, kiss, and even cry when the moment comes!

Favorite Therapy Trick/Tool: 

The best tip I have when it comes the therapy is to make it fun and try to incorporate it into your everyday routine. I am NOT saying make a point to have therapy every day, that would get exhausting, but remember that things you already do can be therapy too J For example we had a picnic lunch it the fort yesterday. Climbing the stairs to get in was physical therapy. Signing and saying the colors of the different items we were eating was speech therapy. Using her utensils to cut things up and eat, drinking from a straw, and then cleaning up and putting things back into our bag was occupational therapy. All three therapies in one thirty minute lunch! Use your child’s interests to make therapy personalized and more fun for them. If they like Mickey Mouse use that as a tool. It can be a reward or a motivator.

Random question: 

If you could see 24 hours into the future what would you do with this ability? I would make sure that I actually shower, wear something other than sweats, and put on a little makeup when I knew I would be seeing someone I know while out running errands LOL! Knowing what numbers to play in the loto would be nice too. Money cant buy happiness but it can buy clothes, shoes, and hair bows which can get expensive when you have two little girls J

Tell Me About Your Diagnosis:

We chose not to do any prenatal testing. All of my ultrasounds and routine screenings never indicated that anything was a concern with our baby. I had an easy pregnancy and labor. When Leightyn was born she was not breathing and the room quickly filled up with hospital staff as they began to work on her. I heard one of the nurses ask another doctor, “Are you thinking what I am thinking?” to which they replied “Yes.” All I could think was that they thought my baby was going to die or that she was already dead. Down syndrome was not even a thought. After what seemed like eternity, although really only minutes, she was crying and breathing on her own. The nurse came over to me and told me that they thought our baby might have Down syndrome based on some of the physical characteristics they were seeing. When they handed her to me, I knew she did, although that would not be confirmed for several days. I fell in love with her and instantly felt the need to protect her. This momma bear was born that day as well. She spent her first few hours in the room with me but it soon became apparent that her heart might be a concern and she was taken to the NICU. An echo two days later confirmed their suspicions and made a Down syndrome diagnosis more likely. She had a complete unbalanced AVSD. At five days old she went into heart failure and was transferred from her birth hospital to Nationwide Childrens Hospital where she spent another week. Sometime during that stay her diagnosis was confirmed but we already “knew” although up to that time there was still a small sliver of hope that we were all wrong.

The Down syndrome diagnosis came as a shock but it was not nearly as scary as the heart defect was for me. I always say that her AVSD was a blessing in disguise when it came to the acceptance of having a child with Down syndrome. Suddenly Ds was not that scary at all and instead something we could manage. The heart defect could actually kill my baby and it almost did Down syndrome could not. It really helped me put things into perspective. Down syndrome was a part of Leightyn but it was not all of her, she was my beautiful new baby girl, and I loved her to pieces!

When I was 13 my youngest sister was born at 26 weeks but measured only 24 weeks gestation. She weighed only 1 pound and 8 ounces at birth and spent several months in the NICU. I think this was also key in me adjusting so quickly to Down syndrome. I had been in the NICU before and had seen all of the monitors, tubes, chords, etc. I also knew about Help Me Grow and therapy. I had seen my little sister have many ups and downs in her first year health wise and yet she had grown into a mostly healthy and happy child. Another reason I was able to adjust to our new normal quickly.

It also helped that Leightyn was my first born so I did not have another child to compare her to. She met her milestones on her timeline and it really wasn’t too obvious to me when she was behind as a baby. She did things when she was ready and in her own way and I didn’t know any different! The extra “work” (therapy, check ups, weekly appointments, surgery) was our normal.

This is not to say that it wasn’t hard at times, it was. I cried, I worried, and I was afraid of the future.  I certainly never thought I would have a child with Down syndrome at 24, but I also never expected to have two beautiful redheaded baby girls with light colored eyes either but I did! There are still times when I cry, worry, and fear for the future, but that is what I have all of my amazing friends and family for, to support me on those days. Down syndrome is a part of our lives and we have chosen to embrace it. Today there is so much more joy and love than there is pain and fear. Everyone has a different journey and that is okay. This is a glimpse into mine! 

From me:

Tika is amazing and I'm so glad to call her my friend. Surely a wonderful example for us all!

 Here is Tika with her beautiful girls!

The [EXTRA]ordinary Face of Disability

I'm just going to put it out there:

Is it just me or does it seem like individuals with Down syndrome are the face of disibility?

Everywhere I turn, I notice that when disibility is portrayed in the media, they often use an individual with Down syndrome. I open up my mailbox, and bam! There is a boy in the Target ad with Down syndrome.

There have been a number of stories in the news regarding this topic and people are paying attention. Is this an [EXTRA]ordinary phenomenon or just good marketing? Should the use of photos of children with a disability in marketing be a big deal? Well I guess it was a big enough deal for me to write a post about!

I do see lots of individuals with Down syndrome in the media. But sometimes I question my obviously skewed perspective. Yes, I admit, I have a skewed perspective. Let me explain...

You know when you buy a new car, and all of a sudden you see that car everywhere? Or if you put your house up for sale, suddenly it seemes like every house on the block has a sign in front of it? Its because suddenly, these things become personally related to you and you notice them more. This is how I think my perspective is skewed.

Hence, I revert back to my first question: Is it just me?

I'll answer my own question: I think it is and it isn't. I think I'm noticing it more because of Wyatt, but I also think the frequency of media using individuals with a disability in the media is rising.

Look at the following examples of recent advertisements or news article samples featuring individuals with Down syndrome.




This little cutie is "the face" of DC Kids Swimwear for the 2012-2013 season campaign




This princess was in the news for her modeling prowess



Everyone knows the handsome boy from the Target ads



Toys-R-Us has featured a kid with an extra chromosome more than once

And don't forget The Pampers Commercial!

The use of kids with Ds in the media is out there, so maybe it's not just me. I think I notice it more, but I also think that Down syndrome, in a way is often used as the face of disability. The first reason for this I can think of is that the facial characteristics of an individual with Down syndrome is nearly universally recognized. Yes, our children look like us (anybody who knows Wyatt can attest to the fact that he looks more like me and Josh than he looks like any random kid with Ds). But there is also the fact that they do have some overwhelmingly common and identifiable facial features. So, because of this, it may be poingant for an advertiser to use a person with Ds because it is a more commonly physically identifiable disability.

The other reason I think advertisers use our kiddos is to represent happiness. This is a good and bad thing, I think. We parents of children with an extra 21st already struggle fighting the generalization that all our kids are happy all the time. This fact is simply not true. I'm not saying that they are not happy, I'm just saying they may not be all the time happy. I mean, you might be happy with you're life, but are you happy all the time? I think not. It is (and let me reiterate thie ) THE SAME with kids with Ds.

Don't believe me? Come to my house. I'll show you Wyatt's alternative superhero personality: captain fussypants face.

Finally, I think that our kiddos are used in media because we advocates are doing our job, and the people who came before us really have done their job. We try to advocate so much for our kids. We want to have them live as 'typical' of a life that they can. People before me have paved the way so that we can see a kiddo in a Target ad who has a disability and it be cool. The disabled population has a place in our society and countless advocates have created that spot. And the overall population is seeing the beauty of our kiddos through the [EXTRA]ordinary faces of those with Down syndrome. Just as people of different races should have been and still be represented in the media, so should individuals with disability. Afterall, they are an amazing part of our community.

Did you know that the Census 2010 reported approximately 56.7 million people (or 18.7 percent) of the civilian noninstitutionalized Population in the United States (about 304 million), had a disability? (according to www.census.gov)

To put that statistic in perspective, let's look at the percentage of people who are Black/African American either alone or in combination with another race, in the US: 

The 2010 Census showed that out of the total population, 38.9 million people (or 13 percent), identified as Black alone. In addition, 3.1 million people, or 1 percent, reported Black in combination with one or more other races. Together, these two groups totaled 42.0 million people. Thus, approximately 14 percent of all people in the United States identified as Black, either alone, or in combination with one or more other races. (Also from www.census.gov).

That means that there are 4% more people reported with a disability than there are people who are black/multi-racial in the US.

I'll be honest, that one kinda blew me away.

So why shouldn't we see people with disability in the media? And I'm not talking about just seeing our kids, brothers, sons or cousins in a pamphlet for toys for "specially abled kids" or in a medical equipment ad in their wheelchair. We should see them in more frequently because they are as much a part of our rich culture and history as anyone else. Personally, I'm glad I'm feeling like we are seeing our kids and adults with Ds more and more! Because I think it is a beautiful honor to be such an [EXTRA]ordinary face for persons with a disability.

So Macy's or Target, McDonald's or Subway, if you call to book Wyatt for your next major ad campiagn, I'll pick up the phone. Because who wouldn't want to see this kid when they open up the mail?

And just to add, you can use Eden, too cause she is equally gorgeous : )

Just sayin'

HAPPY ADVERTISING!

Baby Foodie

Many people ask me about food. No, not big people food. Baby food.

And, as it was never my intent to become an amateur Baby Foodie, it just kind of happened.

See, my kids are great eaters for the most part. We are able to give them a great variety and they don't really complain. They have preferences and things they definitely don't like, but overall the only struggle we have at mealtimes right now is getting Eden to eat her dinner in under an hour (holy slow poke!) and getting Wyatt to stop smirking at me while he chucks food over the edge of his high chair onto the floor. Sneaky little stinker.

So, after many requests and my own failed attenpts to put together a Baby Food seminar for our East Side and Extraordinary Friends Mom's group (one of these days, I'm telling you, it'll happen). I thought at the least I'd jot down some good points here on the topic.

So, how do you create good eaters? I say 'create' because I do think parents have great influence on children's eating habits.

First, I think it starts with educating yourself. My sister made alot of her own baby food for my niece and so it all started when I got some basic tips and information from her. One of the best resources she offered me was the Super Baby Food Book by Ruth Yaron (the website is nice, but you can find it used on Amazon for cheap HERE). This is a great resource for me because Ruth really details when to introduce certian foods. And her list goes WAY beyond introducing peas and carotts. And once I started really reading about feeding my baby and how a heathy diet early on can support brain development, self feeding and create life-long heathy eating habits, I was sold on making this a priority in my kids lives. So talk with other [EXTRA]ordinary Mom's and read whatever you can get your hands on. I highly suggest you get Ruth's book.

The second important part of creating a good eater is VARIETY. That means making your own baby food. Today's baby food market has really taken off compared to four years ago wehn I was starting to feed Eden. Now, you can get those Organic baby food pouches that have a built-in straw-type thingy (yes, I'm sure that's the technical term) and baby food comes in lots more variety than ever before. I admit that I do buy those pouches, mostly for convenience, but the majority of my kids' food came right from my little food processor. So, even with those pouches on the market, you still want to make your own, because those things are expensive! Whew! Usually over $1 an ouch. I mean pouch... I average a 50% savings per serving when I make my own food. Sometimes more, sometimes less depending on produce costs and what I buy. And as saving money is awesome, I revert back to my initial point of variety. Variety is super important. If you feed your child the same things over and over again, they will never get used to trying new things and experiencing new tastes. So you have to offer variety. My kids ate beans, kale, spinach, brussel sprouts, winter veggies, summer veggies, every kind of vegetable and fruit I could get my hands on! And that's easy sometimes when they are a baby, but the secret to variety is DO NOT STOP! Once you get past the baby phase and you're moving into toddler phase, don't stop the variety. You will undo all the hard work you just put in over the last 6-12 months. You must be purposeful about presenting variety in your children's diet. That means ythey have to try new things. And on that note, please don't let one bad experience keep you from serving a food again! It takes anywhere from 10-20 times for a taste to be developed! Keep trying it again and again. Eventually, they might like it!

Now that you're planning on making oyur own food and keeping your kids' diets full of variety, you have to make sure you have the right tools. Please, don't spend a ton of money on those commercial baby food making sets you see on TV. It's a waste, IMHO and I have a much easier and cheaper solution. This idea is in Ruth's book, but I used the Freezer cube method for storing baby food. Here's how it works: I use a small mini food processor to puree food. I can make food super smooth with this or I can pulse it to make food chunkier as time goes on. With Wyatt, this was very important. Kids with Ds can have low tone, which makes eating a challenge sometimes. Since I was making my own food, I could control the consistency of foods for him so that I could find the best blend for his ability, so he wouldn't choke and so that food wasn't just falling down his throat. I could add water or other foods to the baby purees to help thicken or thin a food so he could be successful in his eating. So many baby foods are just one consistency. This is not helpful when trying developing those all-important mouth muscles for clarity of speech later down the road.
HERE is something like the style mini-processor that I used, but they don't sell my version anymore.

Once you start blending, you need somewhere to put all that food. So go get yourself some basic but sturdy ice cube trays. One serving of baby food = one cube. Easy peasy. So you put your food in the trays and freeze. Then you store the cubes either in a zip lock type freezer bag, or if you are environmentally minded, you can put them in reusable containers that are meant for the freezer. When you are ready to feed your baby, just grab a cube and defrost. They are great on the go. Frozen in the morning, thawed by lunch! It's a great method, too because you can make large batches and not make food so often yet keep a large supply of variety. I used to make food on Sunday nights. It would take me about an hour every Sunday to keep my supply up with good variety.

Here's a few pictures of the process and my foods:



Cooking Kale with onions and garlic (yes, my kids eat this)

 

Freezer Cube method with fresh veggies - just LOOK at that COLOR! This was orginic zuchini and yellow squash grown out of a friends garden!



Watermelon puree - have you EVER seen watermelon baby food sold in stores? I haven't.



Next stage asperagus slices. Soft, gumable peices that are easy to chew. And I can even just throw in a few cubes to the adults dinner as an added bonus!



Here is a picture of my freezer, with all the zip-lock bags of baby food. Each bag is a different food!

 

Now my kids eat amazing this, like this homemade organic bean soup with shredded cheese and guacamole on top.     SO GOOD!

 OK, so please don't think I am this picture of pure health. Yes, my kids eat chicken nuggets (although mostly Morning Star Farms, so they are not really chicken, but we do visit Wendy's on occasion). And Eden loves Frency Fries and Wyat could eat a whole pint of ice cream (right along with me). But for the most part, they do eat great.

I think the final pieces in getting your kids to eat great is modeling and setting standard. If you eat crap, so will they. I was shocked when I was eating a salad and Eden asked for some one day. I laughed and gave it to her, thinking, yeah right, she's going to spit it out! Much to my surprise, she loved it and said something to the effect of "see Mommy, I eat like you!" Awwww. So model healthy eating for your kids, then set what I call the "I'm not a short order cook" standard. This is the final piece of the good eaters puzzle. I don't make seperate meals for the kids. Sometimes for lunch, sure, OK, they get peanut butter and jelly and I get a turkey sandwich or something. But overall they get what we eat. And if they refuse, well...tough luck, you're gonna be a hungry kid. Now we've been a little more leanient with Wyatt here and there because of his issues with weight gain. I will make a more hearty, calorie-heavy version of what we are eating for him sometimes. Thankfully, over the last month or so, he's really gained, so we are reverting back to 'all-in' meals. But don't make it harder on yourself. If you set the standard early and model good eating yourself, then you will have less trouble later!

I also want to take a moment here to discuss how Wyatt came to start feeding himself early. Self-feeding and eating solids can be challenging for kids with Ds, thus people also ask me about how Wyatt came to be such a good eater. For Wyatt, I find that his learning needs to be much more purposeful compared to Eden's ability to self-discover. Let me explain: Eden naturally began feeding herself and need little, what we call in the ed world, direct instruction. Wyatt needs direct, purposeful instruction. At 9-10 months, I would put him in the high chair and sit directly in front of him, with Puffs or Cheerios spread out on the high chair tray. Then I would slowly and very over-dramatically put a puff in my mouth and chew. Then say "yummy! eat!" and sign eat. Then I would put my hand on top of his, pick up a puff and put it to his mouth and simutaneously make chewing motions myself and say "Wyatt eat!" I followed this routine for at least one meal a day utnil at about 12 months, he just started doing it himself. And I felt really silly doing it so dramatically, but now, he's a great eater, so it obviously worked! We started working on the spoon recently, but I'm not overly concerned about pushing that right now. I just can't deal with the mess some days, haha!

He's interested, but even Eden didn't master the spoon until well after the age of two, so it's not a priority for me.

OK, I know this is a lot of info so let's review:

- Give your kids Variety
- Get the right kitchen tools
- Make them LOTS of great food yourself
- Continue variety through the toddler years and beyond
- Set the standard for healthy eating through modeling and don't be a short order cook
- For kiddos who may need a little more support, offer direct, purposeful instruction with some great modeling (and if you don't feel silly and over the top doing it, you're probably not getting their attention)

It takes practice and time to get some of these things down. Over time you'll get it and figure out what works for you. I have found this Baby Foodie journey to be an enlightening and rewarding experience and I hope you do too!

Please SHARE tips of your own below in the comment section or ask me if you have any specific questions on how to make your own food!

HAPPY EATING!