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: Inclusive Education

The current education climate for people with "disabilities" from my perspective is a disgrace, putting it nicely. The battle between school administrators, "experts" and parents of children who have perceived "disabilities"  is a horrible one that need not exist. Parent's quickly become the expert of the acronym; IEP, IDEA, FAPE, LRE, OT, PT, SLP ... BS!!!! It seems never ending. Under the guise of well intention our children are being "contained" and segregated from their "typical" peers and deprived of the educational experiences and certain rights of passage because they are considered academically sub par. Most of what I have seen is three fold; lack of education from the "educators", budget's and massive EGO's. After standing up for my son as the most qualified expert I was able to enroll him in the same pre-school my daughter attended. He is able to learn along side his typical peers and receive the education opportunity that he deserves.

The staff has been loving and receptive from day one and they think INCLUSIVE. Inclusion to me goes far beyond just having a child with a disability in a classroom but including him/her in every aspect of that room and that is exactly what the administrators and the staff have done. 

I wanted to share this experience from their perspective in honor of this 29th day of Down Syndrome Awareness Month.

The Morro Bay United Methodist Children’s Center believes that each child is unique and beloved of God. We are dedicated to the physical, social, intellectual, and spiritual development of young children. We celebrate the unique development of each child. The MBUMCC instills values of trust, concern, guidance, love, acceptance and community outreach through our faith, knowledge of child development, and passion for the education of young children. Inclusion has helped our center celebrate children’s unique similarities as well as their different abilities. 

Inclusion is not a single event but a process of education, acceptance, and tolerance. Inclusion opens the doors and provides the opportunity to learn together and create a platform in which we accept one another’s differences and learn that each child has something to offer to his or her community. Each child has an untold story, no ability or limitation should prevent a child from celebrating childhood. 

When approached with the opportunity to enroll Blake into our Preschool Program, there was no hesitation. Our staff and parent meeting included mutual collaboration of each of our abilities and limitations in providing quality care for Blake. We discussed behaviors, modifications, short and long term goals. As a team, with Blake’s amazing mother at the helm, we jumped into the unknown together. 

As an educator, you never really know how a child will adapt, connect, learn, or develop. We blindly accepted Blake, and let him tell us his untold story. Page by page, day by day, Blake’s story is constantly reinventing itself. The MBUMCC offers a safe, trusting, fun, and nurturing environment. Through inclusion we have provided each child the opportunity to engage and learn acceptance, tolerance, offer role modeling, expand their communication skills, and share in a collaboration of love. It has been through tremendous confidence and faith that Blake’s family has entrusted our center with Blake’s education and opportunity to learn. 

Blake is guided by his amazing Para-Educator who offers compassion, encouragement, consistency, direction, and guidance. Blake has given as much as he has received. We are grateful for the opportunity to share in Blake’s learning, growth, and development. We are excited to see his next chapter.

On behalf of the Preschool staff at The Morro Bay United Methodist Children’s Center

Christy Hilliard

Executive Director/Founder Morro Bay UMCC 

www.mbumcc.org

Open Hearts, Open Minds, Open Doors 

We ALL need to think inclusive from day ONE. Studies suggest that children with Down Syndrome benefit from an inclusive classroom, (Buckley), and my personal experience thus far can fully support this clear data. Children with Down Syndrome are more alike their peers than they are different, it may just take them a little longer to show it. I can't wait to see all of the success Blake will have on his educational journey!

DSAM: Day 21

Blake's 21st Chromosome image from his Karyotype

We have reached the 21st day of Down Syndrome Awareness Month. What a lucky number ... in Las Vegas and in my life. For those that don't know (you would be surprised how many people there are) Down Syndrome is a result of 3 copies of the 21st chromosome, also clinically referred to as Trisomy 21. Words alone could never convey the impact this tiny chromosome has had on my life. 

Pre bed time snuggles and giggles

I choose to focus on the positive and enjoy all that has been gifted to me instead of dwelling on the more challenging aspects and trust me there are not in short supply. It is a daily dance to which I barely know the steps and as soon as I learn them someone changes the music.

Blake admiring his half dragonfly pose

A woman I admire and adore read this aloud today while we were practicing Yin Yoga together. She the teacher and I the student. I have really embraced the roll of the student in my life. As a parents you are always a student. As a parent of a child who has extra needs it seems the learning never ceases, literally no end in sight.  The words that were spoken today by my favorite Yogi Teacher really struck a cord with me. I wanted to share them here:

If you could observe your Self from a distance, way over there,

would you critique your size and shape, your weight and your hair?

Would you be kind to your Self?

If you could observe your Self from a distance, way over there,

would you see your thoughts and your inner smile, your fears and addictions and the love that surrounds you 

and carries you all the while?

Would you be kind to your Self?

If you could observe your Self from a distance, way over there,

Would you spend more than a passing glance?

Would you wonder or be curious about the rhythm of your dance?

You are not a mistake or a mere happenstance….

And neither are they, way over there.

It's true!

Happy day everyone,

Love for us all,

By Marylou Falstreau

Women and he Hourglass

www.mfalstreau.com

I love these words. The lack of separation between yourself and others and this notion of equality. What people also fail to realize at times is that we are ALL in this, life, together. Regardless of ability, perceived 'disability', race, income, education, or accomplishments. It made me think about the Down Syndrome community.  Many people consider my son's chromosomal "difference" a mistake, I sometimes happen upon comments on social media stories and see these views first hand and I can almost imagine what people are thinking when they look at us a little too long when we are out in the community. Yes us, from a distance, way over there. From here I see no mistake, I see intention. I see gifts. I adore the blanket of kindness these words provide also, for yourself and for everyone, way over there,

Striped Harem Joggers From Dandy Cubs