Wednesday, February 13, 2013

Happy Valentine's Day! How Betty Jean Taught Me the Meaning of Love

My maternal grandmother, Betty Jean, was born on Valentine's Day. It was always seemed so fitting because she truly had the biggest heart of almost anyone I know. She was the kind of woman who would literally give you the shirt off her back.

Grandma raised five children in the 60's as a single, divorced working mother. She was a beautician by trade, but as we all know, being a hairdresser really means you are a confidante, a psychologist, a friend and more. 


All the awesome Valentine's photos are by Nat. Visit her website for more information.
By the way- all these photos were from a 10-15 minute mini session!!! I can't believe what she captured!!!

Going to Grandma's house meant she had everyone's favorite food and spent the entire visit taking you places that she had been thinking about for weeks and months. Grandma loved adventures and I remember walking with her, my mom and my aunt all over the tiny Nebraska town we lived in during summer evenings. There were family trips and adventures to Colorado, Fort Robinson, South Dakota, Hot Springs, Mount Rushmore and when we moved from Nebraska to Florida there were more adventures including one wild trip to the Orange Bowl with Grandma Betty in tow. 




A visit to our tiny (but mighty!) hometown of Alliance, Nebraska meant that Grandma bought a dozen or so Bizmarcks (a delicious German danish that is filled with sweet cream and has nuts sprinkled over the top) for all of us, the tiny boxes of sugar-coated cereal that we were only allowed to eat on holidays (or visits to Grandma) and platters of cold cuts and cheese filling the fridge. If you ever even mentioned that something was your favorite it was bound to show up at Grandma's house during the next visit. Grandma made visiting the Dairy Queen next door to her house, the Pizza Hut, Pamida, Hatch's Drugstore, the Library or the tiny Frontier Museum seem like the most incredible adventure in the world.





I remember her coming to Ohio from Nebraska for my college graduation and my law school graduation. She was so proud of all of her grandchildren and having grown up so far away from our extended family I was thrilled to get to share these achievements with her.

The last time I saw her alive was at my cousin's wedding in Grand Island, Nebraska. Less than five months later she would pass away. I was at Officer Indoctrination School (OIS) in Newport, Rhode Island learning how to be an Ensign in the United States Navy when I learned that Grandma was in Hospice.  I received special permission from the Commanding Officer (CO) of OIS to leave early for the Thanksgiving holiday to fly back to Nebraska for her funeral. It was one of the loneliest trips I would ever make. Flying from Providence to Chicago, Illinois. Getting on a flight from Chicago to Denver. Getting on the tiny crop duster that shakes and quivers the entire way from Denver to Alliance, Nebraska. 

I will never forget it. I thought I would see her one last time. When we arrived at the funeral mass I looked for her coffin up at the altar. I was so confused. Where was Grandma? I needed to see her and say good-bye. In all of the commotion of everyone coming to town and in grief no one had told me that Grandma had been cremated. I almost passed out when I realized the small urn at the front of the church was all that was left. Now that I'm a little older I understand. Grandma was claustrophobic. She didn't like being stuck in small places. I get it. I'm the same way. When I go I have no desire to buried six feet under. Spread me over the Nebraska plains on the Freimuth Farm when I am gone, but please do not bury me under ground. This bird needs to fly!




Once Grandma passed I was blessed to move close to her brother, Uncle Dick and his wife, Aunt Doris. Uncle Dick was a retired Chief Petty Officer in the Navy and when Grandma passed away in November of 2000, it was Uncle Dick and Aunt Doris that came in her place for my Officer Indoctrination School graduation.  It was Uncle Dick and Aunt Doris who took me under their wings and came and checked on me in Washington, D.C. every time they made a visit in for his doctor's appointments at the National Naval Medical Center in Bethesda. For almost four years they lived closer to me than any other family. It was like an extension of Grandma lived on because she and Uncle Dick shared the same sparkling blue eyes and the same sharp sense of humor.

Throughout our life Grandma and I had two things in common that I still enjoy almost every day. Reading and exercise. Grandma was an avid walker and when the Nebraska winters were too cold she jumped on her mini trampoline in her "condo". We shared a love for reading and when she was alive she would send me every John Grisham novel as it was released. One of our family stories is that as a little girl she loved to read so much that she hid under her covers with a candle and nearly set the family house on fire trying to stay up late reading. To this day when I am awake and reading way too late into the night I think of her and all the books she read and shared with me.

During the last five years or so of her life she kept a notebook of all the books she read. It's a simple spiral bound drugstore notebook, but it is so much to me as I see the curve of her handwriting and look to find inspiration in what books I might want to read. It is one of my most favorite and treasured items she left me.

What I will always remember most about Grandma Betty was her heart. Her huge heart and her compassion. I remember delivering groceries with her to some of her clients when I was just a tiny, little girl. Checking in on the elderly ladies whose hair she fixed every week in her beauty shop. 

I remember when she visited us in Florida how one Sunday we had to drive all the way to Cocoa Beach to buy t-shirts for two of her best friends. They were a couple who had been together for almost 20 years. 

Their names were Ron and Jon and she insisted that they needed t-shirts from The Ron Jon Surf Shop. Today we could have just ordered those shirts online, but back then it was the cause for an adventure. Looking back now, I realize that even in a small town in the panhandle of Nebraska, my Grandma was already teaching me lessons about acceptance and understanding. 


The last ten to fifteen years of my Grandma's life I remember her constant companion being a man named, Jim.  Jim had been a jeweler all his life. Jim was differently-abled and he used an awesome electronic wheelchair that we would hop on the back of and ride from her beauty shop down to his apartment on when we visited him. I remember Grandma pushing to get Jim a van that was wheelchair-accessible so that he could go to my cousin's baseballs games, out to dinner and get around town. I don't know if Jim was my Grandma's boyfriend. Boyfriend, best friend--it didn't matter. What I do know is that she clearly loved him and she showed him her love by helping him to have a full life in his later years.



Thinking of Valentine's Day to me is thinking about Grandma. It's thinking about the love she showed others and how she made each of us feel important and special. I look back and I remember how much she loved my dad. She loved her son-in-law like he was her own son. It's funny how much that means now as an adult. Her love for my dad just helped cement the family bonds together. The love and respect she had for my dad is now evident in the love and respect my parents have for Tom. They love him and respect him and treat him as one of their own and I can tell that my children even recognize it. The power of love is pretty incredible. It doesn't cost a dime, but it can last forever.




I am pretty sure that having a child who is "differently-abled" has been that much easier for me because I grew up watching my Grandma have a best friend who was also differently-abled and it was never a big deal. I can honestly say we never thought twice about Jim being in a wheelchair. He was just Jim. 

I wish she was here to meet my boys and I wish I could share more adventures with her, but what I am grateful for is the time I spent with her. The cards we sent to each other. The trips we took.  The phone calls we shared. The books we shared. I'm most grateful for her example of love and acceptance and for teaching me how to love, which is ironic because she didn't say "I love you" very often.  I didn't used to understand that, but now I know she didn't say it very often because she was too busy living it and showing it.

Happy Valentine's Day! Who are you going to show your love to today?

Monday, February 11, 2013

HE DID IT!!! JOEY SAID MAMA!!! VIDEO EVIDENCE!!!

All photos by Nat.
Two years, five months and seven days. That is how long I have been anticipating and awaiting the day when Joey would look at me and say, "Mama." He said "Dada" almost a year ago and it has been his go-to word. After his first few months of saying "Dada" we noticed he had started to associate it with when Tom would walk into a room and "Dada" has slowly morphed into "Ah Dada" (ie: Hi, Dada). His second word was, fittingly in a car family, "car." 




It was one of those silly milestones that I have agonized over, put false deadlines on (maybe he will say mama for my birthday, Christmas, his birthday and on and on) and pushed for. We saw a performer who's son has Down syndrome and she talked about how her son did not say Mama until he was four years old. My heart broke for her and my heart broke because never in a million years did I think Joey would not be able to say Mama for that long. It can be so difficult and so frustrating when you start comparing, asking, wondering and putting arbitrary age ranges on milestones such as walking, talking and potty training. As my mom and grandma used to say, it's kind of like trying to teach a pig to sing. It annoys the pig and frustrates you. Joey-- I'm not saying you are a pig or a trainable barnyard animal- I'm just trying to explain what certain acts of futility feel like and I have started to learn when I just need to give you some room to breath and some room to do it on your own. It goes back to what Miss Donna first taught me-- the OWL principal. Observe. Watch. Listen. It works for more than speech therapy--it's a lesson for every day of life. 




Instead of false deadlines, Joey has taught us to set high expectations and then let him show us when he is ready for each incredible milestone. He has taught us that providing opportunities (practice, therapy, playing, playing and more playing) is the most important thing we can do for him. Like a little seed who needs sunshine and water, he is growing and blooming in his own way and in his own time. When we let him do just that, it is incredible what he accomplishes.

What was that you just said, Joey????

video

That being said, being non-verbal is a very real issue for many individuals who have Down syndrome. We decided early on that speech therapy would be one of our number one priorities for Joey with the belief that if we can help him learn how to communicate and how to express himself he will have that many more opportunities in life. As a mom, I want him to be able to communicate clearly for safety reasons as well. I want him to have a voice and to be heard and to be able to express himself as well as defend himself if he ever needs.

Just about six weeks ago Joey's amazing speech therapist and I made a decision to no longer ask Joey to say Mama. She believed that he was completely capable, but it had now become a power struggle and he was receiving a LOT of attention from me constantly asking him to say it. It was a tough habit to break, but after a week or so I quit asking him to say Mama.

And just like that, once it was on Joey's terms, came that glorious word that sounded like all of the angels in Heaven singing at once....Mama.

Teasing mommy...


video


I held on to it for about two weeks.  I thought it was a fluke. A "happy accident" that we talk about at speech therapy.  But then Tommy heard it. And then Tom heard it. And then one day I walked in the kitchen and he said it again while looking into my soul, "Mama." I still don't completely believe it when I hear him say it. I am so very grateful that his verbal skills are growing and that he is motivated to talk. 

We think he has started to say, "Ba" (for bath), "I did it", "mine", "go go", "quack", "drink", "cracker",  "more", "ha" (for hot) and "all done." We have also been doing sign language with Joey since he was born. Tommy and I both know about 50-100 signs and we try to use them throughout the day with Joey. Joey also knows quite a few signs and he uses many of them with the words he says. We have used almost all of the Baby Signing Times DVDs with some success and both boys really enjoy watching the DVDs. 





There is also an awesome FREE app called "ASL Dictionary Lite", which has videos for a ton of every day words.  This one is exceptionally helpful when are out and I'm trying to find the sign for a word we need to learn.  This is how we learned the sign for "school" and for "teacher" for Joey to learn. 

For those moms who haven't gotten to this "Mama" milestone yet, it will come.  One mom told me before it happened that the reason he didn't say mama yet was because you don't need a word for the person who is your everything in life. My thought was, "Yes you do. That word is Mama." 


At last!!!

video

It's funny. Because of Joey I have learned to celebrate and drink in this milestones as major celebrations, but I have also learned that there are many moms out there who haven't gotten to this stage yet, and he has helped me to remember that each child has his or her own journey and timeline. 

With that in mind we celebrate Joey finding his voice and I pray that your children are achieving their own milestones in their own time and meaning. We just read about a friend's daughter on Facebook who took her first steps! So much to celebrate in our world of incredible children who are differently-abled as well as in our every day lives.

Does your family have something fun you are celebrating right now? If you look, I bet there is something to celebrate. 


Also- I'm working on a post examining the question...

If you could take away Down syndrome from your child's life, would you?

I have received some wonderful thoughts on this. If you would like to express your thoughts, please email here. All names will be kept confidential.

Happy Monday!

Wednesday, February 6, 2013

The Rest of the Story: An Article Examining All Sides of The Today Show Segment About Prenatal Testing

Maureen Wallace is an excellent writer over at Sheknows.com.  Her article "Parents Criticize Word Choice" examines various view points regarding The Today Show segment I wrote about here. She has a number of excellent articles about being the parent of a child with special needs.
Joey Towell

PARENTS CRITICIZE WORD CHOICE

The Today show recently featured an expecting couple who shared results after taking the controversial MaterniT21 PLUS prenatal test, which can detect genetic abnormalities at just 10 weeks of pregnancy.
With relief and joy, they reported a negative test result, and then live on-air, Today revealed the sex of the couple's unborn baby (it's a boy).
About the test:
The MaterniT21 PLUS test, developed by Sequenom CMM, is a laboratory-developed test that analyzes circulating cell-free DNA extracted from the expecting mother’s blood sample. The test detects the relative amount of 21, 18, 13 and Y chromosomal material, which means the test can detect Trisomy 21, 18 and 13.
Nationwide, some parents of children withDown syndrome (Ds; Trisomy 21) reacted passionately to the segment, criticizing host Matt Lauer’s choice of words by referring to the negative test result as “good news.”
Parents also accused Dr. Nancy Snyderman, chief medical editor for NBC News and a Todayshow regular, of portraying life as a parent of a child with Ds as something to fear.
Snyderman also used the term, “Down’s babies.” More on that later.

While my post discusses the pain I experienced listening to Matt Lauer and a couple discuss the "good news" that their MaterniT-21 Plus test showed their baby does not have Down syndrome, Maureen's article describes her personal opinion that she would take her son Charlie's Down syndrome away if she could and how she was not offended by the celebration of the baby not having Down syndrome. And her reasons are completely legitimate.  She argues that without Down syndrome her child would be much less likely to develop childhood leukemia (a major fear deep in the hearts of every parent who has a child with DS), would be much less likely to have cognitive challenges or as many physical challenges. As Maureen points out, that extra chromosome, can present extra challenges that not every parent would necessarily celebrate. 

Sunday night I had an email from her asking me about my post and posing some questions to me.  While we do not share the same response to the segment, what was incredible was getting to virtually meet another mom in the Down syndrome club and learn about some wonderful new resources and to above all else-- stick together. That was one of our many emails back and forth. We agreed to disagree on some things, but to stick together in this world we navigate. If you are in the T21 club, then you know what the parents are like. The parents are incredible-- at least all the ones I have met and know both in person and online. Are there exceptions to this rule? Of course, but overall the parents, the advocacy efforts, the desire to help every child become their best is absolutely overwhelmingly incredible. 

Below are the questions from Maureen and my responses in her article:

  • How has the response been to your post?
After writing her passionate response, Towell’s blog went viral. While a typical day draws between 75 and 100 visits to her blog, her post about the Today show drew 10,000 visits, and responses began to pour in.
“I have heard from parents, grandparents and even individuals with autism and Down syndrome," she says. "Most of the responses have been very positive and most people felt that the segment was insensitive and did not provide accurate or complete information about the testing.
  • Do you wish you'd said anything differently?
“[The fact that] a person has Down syndrome or any disability does not take away from their ability to understand what people are saying about them,” Towell points out.

Instead of Matt Lauer beginning the story with, “Let’s get to the good news,” Towell says, “It would have been so easy for [him] to say to the family, ‘What were the results of your testing?’”
  • What would you like to say to the Today Show about future segments on issues affecting families of children with Down syndrome?
Jennifer Towell and son Joey
What’s next? Blogger and mom Jennifer Towell offers some specific suggestions for future news coverage on the Today show:
  • Provide an accurate and complete report that shows both sides of the issue.
  • Consult with parents of children with Down syndrome as well as older individuals with Down syndrome.
  • Show people with Down syndrome the same respect you would any other individual.
  • Recognize that individuals with Down syndrome have feelings. They are television viewers, consumers and valued members of families and societies.


Dr. Skotko agrees. “Matt Lauer could have struck a more neutral tone by just asking, ‘The results came back negative for Down syndrome. How does this make you feel?’”
“Medical professionals practice hard to strike a neutral tone, but medicine is as much of an art, as it is a science,” Dr. Skotko points out. “So, too, is journalism.”



I hope you enjoy Maureen's thorough look at this segment on The Today Show. I have enjoyed hearing various points of view and opinions about how the prenatal test was handled and I hope that perhaps it has helped some families to think about these types of questions and issues and to search their hearts long before they decide they might like to become parents. 

For me it has also raised the following question that I have thought about before, but have never truly examined....If you could take away Down syndrome from your child's life, would you?

Does your child have Down syndrome? A different disability? Would you take that away if you could? It's a loaded and complicated question that I will be wrestling with so that I can write about it.  In the meantime, if you have a thought on that topic, please leave a comment or send me an email-- I would love to hear your stories and opinions.

In the meantime, my sister has been tweeting, emailing and calling up The Today Show like nobody's business asking them to PLEASE get a group of moms, family members and individuals with Down syndrome to do as Paul Harvey used to say, tell the rest of the story. 

Will she be successful? I don't know, but I do hope that at some point The Today Show takes a look at how they covered this prenatal test and how they can do a better job in the future.

Friday, February 1, 2013

Mr. February and Is It Wrong To Publicly Celebrate a Prenatal Diagnosis That Your Child Does Not Have Down Syndrome?

Happy February! Today is a day of happiness and celebration as we celebrate Super Joe being Mr. February in the 2013 Summit County Developmental Disabilities Calendar! His good buddies, Casey and Conner (Miracle Men) shared the Mr. January title and we loved seeing their handsome faces all during January.  This month we are excited to see Super Joe with his beloved preschool teacher at It's All About Kids. If you would like to request a calendar, send an email here



We have been working with Summit DD since Joey was first born. As you may notice in the picture, Joey is in his stander, which is an amazing contraption that is helping him build core strength so that someday (soon we hope!) he will be able to stand on his own and eventually walk on his own! Thanks to the Summit DD, we are able to borrow this incredibly expensive piece of equipment for no charge. Thanks to their Community Project for Inclusion, we have been able to send Joey to the same preschool his older brother Tommy goes to and CPI provides equipment, support and training for the staff so that Joey can participate in all the every day activities that go on at preschool. 



 What has been such a blessing has been all of the teachers, aides, students and parents at It's All About Kids who have made Joey a complete and whole part of the community at school. Having a child who does not really talk and does walk or stand at age 2, I never in my wildest dreams thought that he would be able to not only go to preschool, but to also enjoy it! Every Tuesday and Thursday he goes to school I leave him there with a huge smile on my face and he is thrilled to get to play with his friends. Thank you Summit DD!  Thank you It's All About Kids! Thank you peers and parents!!! Super Joe says thank you also...

Is It Wrong To Publicly Celebrate a Prenatal Diagnosis That Your Child Does Not Have Down Syndrome?

I wrote a blog earlier this week about a segment on The Today Show that I found very difficult to stomach and that I found to be a very poor piece of "journalism" and "reporting."  In the segment, a couple does the new MaterniT-21 Plus testing to find out if their child has one of 3 trisomy conditions (Down syndrome (Trisomy 21), Edwards syndrome (Trisomy 18) or Patau syndrome (Trisomy 13)).

During the segment the parents say that if their baby has Down syndrome they will continue the pregnancy, but that they want to know so they can be better prepared. They do not say what they will do if the baby had Trisomy 18 or 13. 


 About halfway into the segment (you can view the entire segment here) Matt Lauer says to the couple, "Let's get right to the good news." 

The mom goes on to say, "We are safe. The baby does not have Down syndrome."


I personally found the segment to be very disrespectful, misleading, and incomplete reporting. It would have been just as easy for Matt Lauer to say, "What were the results of your test?" instead of getting to the "good news." Plus, "safe" from Down syndrome? What does that even mean? I get it that they want a healthy child, but am so disappointed in the presentation of the segment.

I had no idea that my thoughts on this particular segment would raise so many views and varying opinions-- but I'm so glad it did.

Again, I personally think it is in incredibly poor taste to celebrate that your prenatal test results show that your baby does not have Down syndrome, Edwards syndrome or Patau syndrome. If you want to "celebrate" such news in private, that is an entirely different matter. 

I find it wrong for multiple reasons.  I cannot bear the disrespect some people show individuals with disabilities.  Do they think people with disabilities do not have feelings? Do they think that they cannot hear or understand what they are saying? For an excellent post on this, please go here to read about a women with Down syndrome who accidentally called into a radio show.

What about kids, teenagers and adults with Down syndrome who DO understand what Matt Lauer is saying and hear it? What about those people who hear on the morning news that a couple is celebrating that their baby does not have Down syndrome? What message does this send to them? That is where I think The Today Show really dropped the ball. I found the entire segment to be rife with errors and inaccuracies and in overall bad taste.

This all being said--- I also 100% understand that every single parent wants their children to be healthy. No parent wants their child to experience any kind of discrimination, health issue, teasing or anything painful. I agree! I understand! I do not fault these parents on The Today Show for wanting their child to be healthy at all. What I do fault is The Today Show's decision to run this segment in the way that they did.

I also don't want any parents who had a prenatal diagnosis that their child has Down syndrome to feel bad for being worried, for mourning the diagnosis and for being sad about this diagnosis.

We had a very, very early prenatal diagnosis and it almost tore our family apart. It was hard. It sucked. At times I wanted to die. I wanted to be in a car crash and not have to worry about having a baby who society would not value. I wanted to have a "normal" pregnancy and not have to worry about hearing the R-word in movies and on television. I saw other pregnant women and I envied their joy and their anticipation. I wanted to be excited to be having a baby instead of constantly worrying about what the rest of our life would look like and how Joey would fit into it.

At that time I just wanted the Down syndrome to go away.  Why did I feel this way? It was fear. It was fear that my precious baby might be teased, ridiculed and might not have a full life. It was fear that Down syndrome would be more than I could ever possibly handle. It was so much fear that it completely gripped my whole world and sent me into weekly counseling sessions during the pregnancy to try and hold it all together. It was, other than living in D.C. and being in the Navy during 9/11, one of the most trying and stressful and difficult times in my life. What makes it more difficult is the guilt I had then and the guilt I still experience that I was so afraid about this amazing little boy who I would now go to the ends of the Earth for.

It took meeting people, talking to other parents (you know who you are-- and you were all and still are all AMAZING and I still turn to you almost weekly for advice), reading other blogs, reading books like Gifts and educating myself to help me finally accept that despite all my worries, Down syndrome was not anything to be scared of and that I needed to be grateful to be having a child no matter what diagnosis he might have.

Baby Joey


I come to this from a place of initially being afraid to have a child with Down syndrome to becoming an advocate for Down syndrome. For trying to help make sure people with Down syndrome are seen as individuals who have so much to offer our world and our society. 

What our experience taught me is that if you want to become a parent you need to go into it with eyes wide open that there are NO GUARANTEES. To me that means that there are no guarantees about health, aptitude, success, failure-- anything. As one mom wrote to me- a true tragedy is losing a child. Down syndrome is not a tragedy. That is my opinion as well and it took going through my own time of grieving and learning to understand that. I feel blessed in some ways that our prenatal diagnosis gave me the chance to be angry and to grieve before Joey came into the world. I remember almost the exact moment that I no longer cared about the Down syndrome and that all I wanted was Joey to be here.  I was reading a post by a mom who's daughter, Gabby, had Down syndrome and who had a heart condition (like Joey), but who died. I read about that mom's grief and her pain and it finally clicked-- the Down syndrome just didn't matter anymore.  All that mattered was meeting Joey and holding him in my arms.



What I hope to do is to help other moms and families who may receive a prenatal diagnosis that their child has Down syndrome to see just how amazing our kids are. I also hope to keep spreading awareness and trying to encourage acceptance and respect of all individuals just as God made them. (Visit here for a wonderful organization dedicated to doing just that).

His first smile post heart surgery.

For all of these reasons, I understand parents wanting their children to be healthy. I also understand that many people would be glad to find out their baby does not have Down syndrome. But I also hope to continue to spread the word as one mom put it, "I never knew how bad I wanted a child with Down syndrome until I had one." For me, Down syndrome has given me a life I never knew I could live.  A life full of challenges-- lots of challenges, but a life that is so full, so rewarding and so incredible all because of Joey's existence. 

Baby Joey.
I have said it before and I will say it again-- Dearest Joey-- I am so sorry I ever even thought I might not want you just as God made you. I'm sorry I didn't have the faith the entire time to know that however God made you would be exactly as you should be. I am sorry I ever grieved even for a minute any single thing about you. I love you completely as you are and I am forever grateful for the opportunity to be your mom.