Gomez & Morticia: DSAM

This is our third Down Syndrome Awareness Month (DSAM) where we have had Blake and Amelia assuming roles of iconic characters. Amelia's mother, Nicole and I feel like it is a creative and unique way to celebrate DSAM! You've seen them as Danny and Sandy and Major Nelson and Jeannie and for 2019 they are SPOOKtacular as Gomez and Morticia Addams.

It is also Halloween Month (I love October) which is full of spooky and scary costumes, parties and events. One thing that isn't scary is Down Syndrome. That said, I was terrified when Blake was born. I was scared for me, for him and what it meant for our future. In the years that have passed I realized how ridiculous I was. My reaction was based on a lifetime of conditioning from a fear based society. A society who strives for generic sameness instead of celebrating differences. A society who would rather be fearful and use it as an excuse for not moving forward and evolving rather than learning, facing their perceived fears and growing. And a society who still segregates people like Blake and Amelia in schools all across the country and won't engage in inclusive practices out of fear.

I was afraid of Down Syndrome, what a gift reflection in hindsight can be. But as Blake grows I have realized a much bigger fear. I fear the world I am leaving him in. I fear the realization that I am not going to live forever and wonder what will happen to him? who will be there for him? who will protect him from this scary, exploitative society?

This community has a serious housing shortage and issues surrounding meaningful employment for fair wages. There are issues with services and supports. We continue to fight for meaningful inclusion in education and in our communities. Advocacy is a long, frustrating road but Blake, Amelia and this community need as many collective voices as possible. We need those voices to speak up to advocate and to educate for respect, and also quality of services and supports. Because let's face it the scariest thing of all is the root cause of these issues, ignorance. I was there once, before my greatest teacher, Blake came into my life.

Dear Blake and Amelia, 

We will never stop fighting for you, advocating for you and educating people for you. We will combat the ignorance with education, the misconceptions with accurate information and the fear with love .. cross our hearts!

Nicole's cam

How are you celebrating Down Syndrome Awareness Month?

Siblings: The Unsung Hero's

Down Syndrome Awareness month (DSAM) is October and for the entire month  I usually bombard my social media feeds with facts, blogs, and images in an effort to raise awareness about my son Blake and his community of people with Down Syndrome. I actually do this all year round, so it is always "awareness" and education month for us. This year for DSAM I want to focus on the not so talked about topics like siblings during this awareness month.

In the past Blake's siblings have written a blog that was feature on The Mighty (Read here) and expressed how they felt having a brother with Down Syndrome. Today it's my turn. I also will include the thoughts and perspective of another mom, Nicole in our community who is a few years behind us on this adventure.

Just like everything else in life there are both positive and negative aspects to being a sibling and I feel both sides are more enhanced when that sibling has a disability. In my home the highs are really high and the lows are devastatingly low. My daughter is along for this roller coaster ride. As mother's we do our best to divide our time if we have multiple children but to be honest my son gets more than his "fair" share of my time and energy, because the nature of his disability requires more. I know this leaves my daughter feeling frustrated and hurt as she approaches her tween years. She has expressed it to both my husband and I. As she is aging, I know she also has fears and concerns for his future, much like I do. She asked me, "what happens to Blake when you and dad are gone?" not to long ago. I explained that we are working for Blake to be independent and live alone but reminded her that he will likely always have a need for support. I don't want her to feel pressured to have to be his sole caregiver in the event of our deaths. It may seem premature to be discussing with a 10 year old but anything can happen in life at any time. I want her to know that she can care for Blake if she chooses but it is not her responsibility.

Fears and frustrations aside she is  his biggest fan, my greatest helper and an amazing big sister! I know that his presence in her life is making her a better, more patient, compassionate and understanding young lady. Blake has opened a whole new world for everyone. We have met so many people we would have not otherwise, attended special events, and participated in activities in a way we wouldn't have been able to otherwise. The benefits are not lost on her, neither is the joy he brings or the love they share.

She is and always will be my SHEro .. and his.

Nicole shares her perspective ...

With Down Syndrome awareness month coming to a close, I  feel it necessary to pay homage to the unsung hero in my house. This would be my 6 year old (typical) daughter, Olivia. Olivia is less than 2 years older than my daughter with Down Syndrome, Amelia. Like most parents with two or more children, we struggle to divide our attention equally. The fact is that Amelia needs us more, plain and simple. That is hard for a six year old to understand, but Olivia does. Amelia has odd behaviors that make even the simplest tasks, like walking one block to school, difficult and time consuming. For the most part, Olivia seems to have unlimited patience with her sister. Olivia and Amelia’s relationship, like Amelia, is more typical than different. They fight, they play, they fight some more, they love each other.  They are siblings. 

Overall, I think having a sister with Down Syndrome has made Olivia more patient, kind and selfless. This year Olivia and Amelia are attending the same school. I asked Olivia what the best part of going to the same school as Amelia; her answer? “Getting to hug her everyday day at lunch”. Olivia makes my heart full. When I asked her what the worst part was; she responded “ Sometimes Amelia hugs me too tight”. 

I guess for Olivia, she only knows what it’s like to have a sister with Down Syndrome. I’m sure that Olivia notices her friends with typical siblings play together and I often wonder if she’s jealous, if she wishes that Amelia didn’t have Down Syndrome. If she does, she never lets it show. Olivia just accepts Amelia how she is...her sister.

Cheers to raising strong girls, supportive siblings and SHEro's!

DSAM: Danny & Sandy

In honor of Down Syndrome Awareness Month I teamed up with my friend Nicole to do a cute themed shoot of our children Blake (6) and Amelia (4). With Halloween just around the corner we channeled one of our favorite musicals, GREASE!

There are so many misconceptions about our kids still exists in our society and it is my hope that through advocacy, education and visibility people can start to shift their focus from our children's "Disability" to their ability. Let's start celebrating differences!

Is having a child with Down Syndrome challenging, difficult and sometimes hard? YES

Is having children challenging, difficult and sometimes hard? YES

Is it worth all of the struggles, effort and challenges for our children with Down Syndrome? 1,000 X YES!

Is raising children worth all of the struggles, effort and challenges? 1,000 X YES

See where I'm going with this .....

Our two little on set diva's were challenging to wrangle and capture on camera but the results were well worth it, just like them!

Nicole, Amelia's mom said "Amelia has the same wants and needs as any other 4 year old. Being Amelia's mom has given my life a purpose and has fulfilled me in ways I didn't think possible. She is also just a kid!"

The most famous lyric in the film, "You're the one that I want" Is perfect for our children with and without Down Syndrome. Obviously a different context but I have to say nothing could be more appropriate on Down Syndrome Awareness Month. Blake is exactly the son I want and the son I never knew I needed. He has made me a better human and mother.

DSAM: Dad's Devotion

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The 31st day of October marks the end of Down Syndrome Awareness Month. For me DSAM is every month but I am grateful to have this time to share information, shatter myths/misconceptions and hopefully shed new light on this marginalized population. Over the last month I have shared personal stories, expert advice and information about speech, occupational therapy and education. I have also had the pleasure of sharing several stories from amazing mothers in my community. My last DSAM blog for the month is from the best Father any child could ask for. Four children have been blessed to call this man 'Dad'. My husband wanted to share his thoughts about our son and the Down Syndrome community and I could not think of a more perfect way to close this amazing awareness month.

Blake has brought so much awareness and compassion to my life for a community I had overlooked.  Blake has Down syndrome, not “Downs” as many people unknowingly refer to it as, surprisingly including several doctors I have encountered.  Blake has love, passion, fear, anger and all the emotions so called “normal” people have. 

I am learning to slow down in my everyday busy life in being patient with his often delayed cognitive processes.  In approaching life in such a manner I see how much is missed by having expectations for instant gratification and results which plagues our society.  Many people are searching for ways to be more present living in the moment via yoga, meditation, etc. while Blake has taught me this just by spending time with him.  He has also taught me to be more accepting and compassionate towards others.  He is completely nonjudgmental.  This is one of his strengths that many adults could learn from.  Much of my evolution has taken place naturally by being in his life.  

I have had people say how sorry they are when I tell them my son has Down syndrome and my response is why?  I feel sorry for all the people who do not take the time to educate themselves about people with disabilities and the families who care for them.  I have been disgusted with the discrimination I have experienced with many people in how they treat people with disabilities. 

 I treat Blake the same as my other three children, each of whom has their own personalities, strengths and weaknesses.  I put more time into helping each of them in the areas where they need more support as do any loving parents.  Blake truly brings joy to life along with many challenges as do children in general.  Blake is making me a better person each and every day.  He has a purpose in this life that I can see unfolding in the goodness he has brought to so many he has touched.  

I am honored to be Blake’s father.

DSAM: Para Perfection

First Day Of School

The last two days of Down Syndrome Awareness Month I saved for two of my favorite people. Today I have the pleasure of introducing one of my best friends, mother of 3, teacher and now para educator to my son. As a parent of a child with different abilities navigating the education system is exhausting, frustrating and daunting to say the least. The school assessments and IEP Meeting (IEP = Individual Education Plan) where all of the experts use the opportunity to discuss all of the things "wrong" with your child, all of their weaknesses and how they fail to 'measure up' to the performance of their peers, one emerges from the darkness shaken and quite frankly disgusted. By one I mean me. At the end of the day Blake received the placement he deserved and I was charged with finding the perfect para educator for him. Truly without hesitation I thought of my friend and highly skilled, credentialed teacher Jensine. Thankfully the planets were aligned as she was available and willing to dive into these uncharted waters with us. There is no one that I would rather be on this (or any) journey with. 

First Day Of School

She has kindly shared her thoughts and feelings about being Blake's bridge between him and his peers, his voice as he learns to find his own and also his friend who TRULY has his best interest at heart and cares about his progress, no matter what the pace so long as it is forward. With her love and guidance it has been. I know it is not an easy job but I appreciate it more than any words could possible capture or articulate. She along with thousands of para educators and educational aide's are providing an essential service to our society. They are opening their hearts and utilizing their skill sets to address the educational needs of a marginalized community who administrators would rather lock away and forget about. It is because of Jensine that Blake will be able to learn and grow in a traditional classroom setting and not in a contained classroom. He will not come of age to live in a "contained" world so I personally find it preposterous that he is to be 'educated' in one. She will have my heartfelt gratitude FOREVER.

Blake and I are well into our second year at UMCC together.  I have known Blake since he was an infant, when his mother and I became fast friends (I had just had a baby as well).  I always remember Blake trying to keep up with his dear older sister, Kaleigh. He has always been such a lover, too. I mean, this little guy will steal your heart in a split second with a loving gaze and sweet smile, followed by the most sincere, back-patting embrace.  So while I have known Blake for years, it wasn’t until I acquired the position as his para educator, now I can truly say that I really know him. What a gift that is. 

To be a part of Blake’s education has given me a chance to connect with a beautiful boy, who happens to have Down Syndrome.  He is honest, genuine, and unfiltered. If only I could use his unique talent to politely get rid of somebody by simply waving, while saying “Buh-bye!”  He is passionate and deliberate in anything he wants to do.  Whether it be independently navigating and climbing an elevated bridge with a giant hole in the center, or not wanting to cooperate during a transition in class, Blake is quite the determined youngster. 

To be present for and to celebrate Blake’s milestones and victories, is nothing short of amazing. He has grown so much since attending a mainstream preschool where Blake is well liked by the staff and all of children that Blake attends school with.  Blake will play with anyone, but has several best buds at school that prefer to seek out and play with him.  A few of his friends enjoy recognizing new skills that Blake masters and new words that they hear him say. What a pleasure to witness the excitement when one friend runs toward me from across the playground to announce, “Blake said /k/! He is trying to say ‘Kal’ because he knows I’m his friend!”  These preschool-aged children have kind, innocent, open hearts. Inclusion benefits all parties involved.  We can all learn from one another.  What better way can we improve our society than to teach acceptance and compassion for all?

Working so closely with Blake has taught me more about persistence and patience.  In many instances, an extra second or two can make a big difference. I feel that there are great benefits in learning to take a moment before responding to people and/or events, while also granting that “wait time” to others who may need or desire that. This is just a snapshot of what I have gained and experienced while working with Blake.  I can’t even fathom what it must be like to see the world through Blakey’s eyes, but I know that being his para educator has given me unteachable insight and a vast wealth of knowledge regarding human nature and what it feels like to love without conditions.

  

DSAM: Nicole's Story

All month long I have had the pleasure of sharing stories from women to whom I am connected to through the extra copy of the 21st chromosome. Who knew chromosomes could connect people? another place that I find gratitude. Nicole is also the founding member of the new local advocacy and education group: CCDSN - Central Coast Down Syndrome Network. I'm proud to serve on the board of this local organization, along with other mothers and it is the first in our area!

Join me in wishing the beautiful Miss Amelia a HAPPY 2nd BIRTHDAY! and enjoy her equally beautiful mama Nicole's story.

On October 23, 2013, I gave birth to my second daughter. A beautiful blue-eyed angel, whom I named Amelia. I knew months before I had her, that would be her name. In fact, thanks to an insufficient placenta, there were a few things I knew about my child before she was born. I knew she was a she.  I knew she was petit. I knew she would be born via c-section. I knew that she was very healthy. I knew sh would wear a Sleeping Beauty costume for Halloween.  And above all, I knew she was a fighter. At twenty-nine weeks, my perinatologist told me to be prepared to deliver early as she didn't think my placenta support my unborn girl for much longer. She told me that I would be lucky to reach thirty-three weeks. So imagine her surprise, and the surprise of my OBGYN when we made it to our scheduled c-section at thirty-nine weeks, without going on bed rest or leaving work early. So, imagine my surprise when on October 24, 2013, the pediatric hospitalist on duty came into my hospital room to talk to Dan and I about trisomy 21.

Dan was not shocked, for the first time in 24 hours he was able to admit out loud that he thought there was something "different" about Amelia. Through the tears forming in his eyes, he looked strangely relieved. I, on the other hand, was in complete shock, I was numb with it. When the physician and nurse left my room, they took Amelia to check her into the NICU and begin some tests. Dan and I were unable to go with her as they were doing a procedure in the NICU and during that time no one was allowed in. Soon after, Dan looked at me, he told me he loved me, he told me it was all going to be fine and he needed to go out for some air. As he kissed me I could feel the numbness wearing off and pain and fear taking its place.

 I took that time to call and text a few relatives and friends.with each conversation the pain and fear took over more until I was a sobbing mess full of irrational thought. Until the day before I had never met anyone with Down syndrome. I knew nothing about Down syndrome, other than the common misconceptions. Suddenly, pain and fear were accompanied by darkness. And then my natural instincts took over.  I grabbed my iPad and began to research, and research. I called down stairs to the ED, where I work as a Data Coordinator, and spoke to my director. She ran up stairs with a pad and some pencils so I could make my notes. I made calls to physicians I knew to get referrals  and copies of articles from medical journals. I was determined to be an expert on all things related to Down syndrome.  With every piece of information, I began to feel more powerful, more in control.  The darkness, pain and fear were being locked away in a very small place deep down inside of me. 

The information I had obtained in those few hours confirmed what the pediatrician said, my beautiful, perfect daughter had Down syndrome. That was abundantly clear to me the first time I was reunited with her in the NICU. Her low muscle tone and tongue thrusting were no longer little quirks. What the information couldn't tell me is what having Down syndrome would me for Amelia, or our family. That unknown would allow the darkness, pain and fear to escape violently from its hiding spot for very short periods of time when I was alone. 

Over the next fourteen days, I got to know Amelia. From day one she was the decider of her own fate. When she was ready to be off oxygen, she reached up and disconnected the blue tube. Everyday I wen to the NICU at 8 am and dressed her in a new outfit. I even dressed her up in her Sleeping Beauty costume on Halloween.  I could tell by the sly look in her eyes she liked the extra attention she got while wearing the princess costume. Finally the day came when Amelia was coming home. Although, Amelia's personality shined so much brighter than her diagnosis. I was afraid. The irrational fear of her coming home pushed the pain and darkness close to the surface. 

It wasn't until Amelia had her first appointment with her pediatrician that I was able to reconcile Amelia and Down syndrome.  After he examined Amelia, read through her medical records, he turned and looked at me. I knew that my pain fear and darkness were all present on my face, like a bad Halloween mask. He very carefully said "She's just a baby. Do with her everything you would if she didn't have Down syndrome."  I asked about daycare, if I would need to quit my job and he said "Would you put her in daycare if she didn't have Down syndrome?  She's just a baby".  No truer words were ever said. 

I often look back at the first couple of months after Amelia's birth and I feel silly, and ashamed. I am ashamed I had so little faith in my daughter. At three months old Amelia started therapy and from day one she has eagerly met every challenge her therapists have given her. Earring the nick name "Amazing Amelia". She meets all of her milestones, some on par with "typical" children and some a little slower. All of them in her own time. 

More importantly, she is already a loving, compassionate, strong willed and sometimes devious little person, in other words: a typical two year old. This is evident by the way she feeds her baby doll everyday.  The way she comforts her older sister, by a soft rub on the arm. And the way she lights up at daycare when she's with her friends. She never lets anyone push her around, nor does she take no for answer.   As we head into the "terrible twos" she makes her opinions known!  

The pain, fear and darkness are almost completely gone. They are being replaced hope, love, admiration and thankfulness. I admire my daughter's strength and determination. And I am thankful to her and her extra chromosome for what they have given me. Over the past two years, I have found a purpose greater than I ever had before. I will do my best to make a world that is accepting of my daughter. I will follow Amelia's example, I will not give up. I will be an advocate, not only for her, but for everyone that is thought of as "different".  I will fight anyone who tries to get in her way. And I know that I am not alone. Over the last two years I joined a wonderful community. A community full exceptional people that I wouldn't otherwise have the pleasure of meeting. 

Although, I am definitely more raw since Amelia's diagnosis, overall I am a better person. I am a better mom, to both of my daughters. I will admit, it is difficult and sometimes exhausting. However, it is always worth it. And I wouldn't change anything about either of my girls. Down syndrome is as much a part of Amelia as I am. I am no longer afraid of Amelia's Down syndrome, I have truly accepted and embraced it. And you should too!