Down Syndrome Awareness: Going to College

People with Down syndrome...going to College? Yes, as a matter of fact there are many colleges with programs that are targeted to individuals with Down syndrome and other intellectual disabilities.

Nichole is only 3 years old, it is hard to know what her abilities will be when she is 18 or 21. We do not know if she will obtain a High School Diploma or a High School Certificate. But what we do know, is that regardless of what she obtains, there are programs and places where she can go to College, and I want to share two of those with you, because they are my favorite options out there.

Shepherds College is the country's leading three-year post-secondary educational program for individuals with intellectual disabilities.

Just browsing their website gives me hope for Nichole's future. This is a real college experience, and there is adequate care and support for the students. Who said Nichole would live with us forever and never go to College, this is definitely a place where I would feel comfortable sending her to!

From their website:

That’s who we are. But what’s more important is who you are. What are your goals and dreams for the future? Shepherds College can help achieve and even expand those goals. We offer career skills, a smooth transition to Appropriate Independence and a lasting awareness of God and His plan for your life.

Think College is a phenomenal post-secondary program that focuses on transitioning students into a regular College Environment. Their website is a wealth of information where you can find colleges with programs in your area. I would highly recommend anyone to take a look at Think College!

From their website:

Doors to colleges are opening for people with intellectual and other developmental disabilities in many different ways all over the country. This website is designed to share what is currently going on, provide resources and strategies, let you know about training events, and give you ways to talk to others. The information is for transition aged students as well as adults attending or planning for college. It provides resources and tools for students, families, and professionals: click on the tabs above to see what’s here for you.

Lastly, I want to mention Pablo Pineda. He is a Spanish man with Down syndrome who has earned TWO College Degrees. Not special education degrees, but well earned with hard work and dedication. He is an inspiration to us of a life without limits! Pablo also speaks English :)

My Three Year Old Has Down Syndrome

My three year old has Down syndrome. Most people that see her can tell right away. Some have known her for a long time and know that she is more alike other 3 year olds than she is different. To me, she is different than other 3 year olds in that she has changed my life and heart in more ways than anyone else has in my lifetime. In only three years, she has showed me what love, joy, peace, kindness, and gentleness really look like and feel like.

So I thought I would give you all a base-line of Nichole's abilities. But remember that all kids with Down syndrome are not the same.

• She can say 2 and 3 word sentences that we understand (most of the time) We are sure she can say a lot more than that but there are just many times when we do not understand what she is saying. When we ask to repeat what she said, it sounds exactly the same and we still can only pick up the 3 words here and there of her story.
• She knows shapes, like circle, triangle, square.
• We are not sure if she can count, but she seems to try to count with us. This is also due to not understanding her speech very clearly.
• Nichole knows some letter of the alphabet. Just the other day she surprised me by pointing and saying, "A" and sure enough, there was an "A."
• Nichole can follow two step directions very well.
• She is a little rascal and she knows too well when she is doing something she is not supposed to be doing.
• Nichole is getting better at listening when we are outside. More and more she stops when we tell her too. After our escape artist incident, we have been cracking down on her with this one.
• She is a matching champion! She can match any card to it's matching picture.
• She is trying to jump, and she is getting so close!
• She is very good at imitating and she does fairly well at dance class. But anything we ask her to do, she is willing to try.
• Nichole loves her big sister Ellie.
• She is great at playing pretend. She likes to play doctor, mommy, and Barbie.
• She enjoys playing dolls too, and Barbies are a favorite in our house.
• She loves to color and she is pretty good at it! She does not stay in the lines, but she can cover a hand with color.
• She does fantastic at church with her different activities. She follows along with the songs, doing actions, listens to the stories, and loves it!
• She still gives the best hugs!
• Nichole cannot handle someone being sad, she has to hug them and pat their back. She is too sweet!
• She can climb up and down the stairs on her own, but I am always there because she is not very safe yet.
• She can fed herself and does a phenomenal job at drinking from an open cup. As a matter of fact, she gets an open cup for lunch and dinner.
• She likes to look cute, and she loves looking at herself in the mirror and look at her pictures.

So this is my sweet girl in a nutshell. I cannot imagine my life without her. There is really nothing about her that I would change. We are all in love with this little girl and feel so blessed to have her in our family!

The Pumpkin Patch

Yesterday a friend of mine came with me to take my girls to a Pumpkin Patch. Our MOPS group has been doing this for...maybe 3 years? It has been cold before, but not this year! It was a sunny, hot day for us!

Nichole even wore her sunglasses for all of three minutes...tops!
Nina was brave and she actually knelled on the floor as she chose her pumpkin. She has some sensory issues (after almost 4 years being locked up in a room with little opportunity to go outside, it is no surprise this girl has some sensory issues) She loved the pumpkins, loved the hay ride! She even sat on the hay! Thanks Barb, for sitting by her and lovingly putting your arm around her.
Ellie chose "the most perfect little pumpkin of all."
Nina was fascinated by the many pumpkins, and she walked a little bit with her walker. Pointing at all the pretty things outside with awe. A day when I was reminded of this simple fun family activity that she would have never had if she did not have a family of her own.
Nichole just loves walking more than looking around, but she did stop to pick up a flower that had fallen from a flower bush and carried it around for the rest of the day.
And since Nina is not as mobile, it is easy to have her pose and take pictures.
There is a hay tunnel, slide, and sand area in this place. Nichole finally got over the "ack!" if the sand on her every time she landed from the slide and decided it would be fun to play in the sand.
And Ellie decided to pose with Nina for one picture. At this point Nichole was not leaving the fun in the sand. So you take what you get when you have 3 little girls.

My Teacher of Life

The pride I felt seeing my sister graduate from college yesterday made me dream of the day my girls graduate. I pictured all my girls on that day, decked with their caps and gowns. First Ellie, gracefully receiving her diploma, a beautiful young lady with a heart full of love and compassion, ready to live out her next dream and shine her light. I saw Nina walking, yes, walking to receive her diploma, with a father and mother sitting on the stands cheering her on and proud to call her their own. I saw Nichole too, and it was hard not to cry picturing that day.

I don’t know what will be of Nichole’s future. She is only 3 years old, but right now we do see college in her future (there are many programs available now a days for individuals with Down syndrome) It will be a day full of celebration, of empowerment, and of great accomplishment. My friend Leah wrote of her daughter Angela on her essay in Gifts 1, “The sky is her limit.” And so it is for Nichole.

But what if Nichole is not able to go to college? What if realistically her intellectual capabilities are not found in a classroom of higher education, even in programs targeted for others with intellectual disabilities? Will we have failed? Will she have failed? Will there be less value to her life?

She will never be a doctor, a lawyer, or a scientist. She will not be the greatest athlete or performer. She will not find the cure for cancer and she will certainly not be the next president. But then I look at Nichole and I am trapped in her eyes, unable to look away, unable to question anymore. The little girl that looks back at me is not broken, and she is not less than perfect. The value of her life is not found in all the things that she will never be, but in the things that she is. And at only 3 her accomplishments are those that many of us seek to someday reach.

Nichole might not be a college graduate, but she is my teacher, my teacher of life. She has taught me what celebration looks and feels like. The power of cheering for others and the freedom of dance. She has taught me that a worthy performance is not found in a basketball court or a stage, but on a living room floor stacking blocks, and in saying “crackers please.” I see it as she embraces people and her love bring them to tears and a muster from their lips, "She makes me feel loved like I never have been before." I have seen worship to God that is so honest and seems so pleasing, that it brings me to tears. I see it as Nichole tries to sing along at church, raising her arms to the God that gave life to her, or singing along and dancing to a video while she tries to sing along, “Let everything that breaths sings praises to the Lord, praise the Lord!”

She has partnered with God to work in my selfish heart. A heart that many times is so lost in this world and forgets that the standards I live for are not the ones set by people, but those set by God. She lives them, she teaches them to me.

I have seen joy in her, and wished that I could feel what she feels. It is so pure.

I have felt peace and love through her. At times when I am down, she instinctively knows it and comes to pat my back, and then she pulls me tight into a hug and offers a smile, maybe even asks if I need some crackers or chips too.

And every day she works harder than I usually do to master and accomplish new skills.

No diploma will ever be able to credit the value of Nichole’s life or the meaning of her accomplishments. She is already ahead of me in the things that really matter in life, and therefore she is my teacher and I her student.

And someday, maybe I will get to “graduate” and she will be the one cheering for me saying, “You did it mom! You did it!” And I hope that she is as proud of me as I am proud of her now.

This is reposted in light of Down syndrome awareness month.

Down Syndrome Awareness: Answering Your Questions: When People Stare

How do you handle people's comments about Nichole as well as children who do not mean to hurt but do in their natural curiosity?

When Nichole was a baby, I was sure everywhere we went people would stare at her because she had Down syndrome. Whenever people would say things like, "She is so cute!" Deep down I struggled thinking that they were being nice not knowing what to say because of her Down syndrome looks. Now that Nichole is 3 years old, I look back and realize that those were my thoughts and feelings. I was the one dealing with the diagnosis of my baby, not them! When someone said Nichole was a beautiful baby, it was because she was beautiful. She still is one beautiful little girl.

However, there are times when people do stare at her. There are time when I know by the look in their faces that they are trying to figure out what is "different" about my little girl. I do believe the older Nichole gets, the easier it is to notice her facial characteristics of Down syndrome. I have gone through many stages as I learn to deal with the staring. First, I wanted to hide her and protect her. Then, I wanted to say, "How dare you stare at my baby! She has Down syndrome so what!" or even say, "What are you staring at!?"

See, the truth is, before I had Nichole, I would secretly stare too. I was not being rude, or mean, I was just being curious. I never had ill intentions when staring, I was just very ignorant about "different" people. I think it is safe to assume that most people are also curious and simply don't know much about differences. Some people are rude, and some people are mean. Thankfully, I have not personally encountered people like that.

What I do now when older kids or adults begin to stare, is engage them in conversation. I know they do not mean to be rude, and I know they are curious. I like to make eye contact and I always ask the same question, "She is pretty cute, isn't she?" Sometimes this questions surprises people, some might turn away, but most people (at least those I have encountered) are faced with an opportunity. They can stop staring and actually look at Nichole. I have given them permission to look closely at her, and see her beauty. I have told communicated to them that it is okay to look at her beautiful little face. After a while of people looking at her, I usually get something like, "Yes, yes she really is beautiful." Some might be brave enough to ask questions, and I really appreciate it when people do ask about Nichole or Down syndrome.

As for children, I have not had any child ask a question that deep down hurt. Ellie, my oldest, does a pretty good job educating her friends. The only thing I get from some kids is why Nichole cannot talk. I tell them that she can, we just don't understand her, which is why she also talks with her hands and uses sign language. No kid has ever told me that she looks different. When it happens, I probably will blog about it! Ha!

And remember that if you have any questions about Down syndrome, I will be answering them this month as it is Down syndrome awareness month.

More Alike Than Different

Happy Third Birthday Nichole

Three years ago, Nichole made her appearance in this world. I saw her coming out of me, I saw she had Down syndrome. I was scared. For two weeks I cried every day, several times a day. her diagnosis seemed so daunting, so hard to live with. I look back at that day, and I wish I could go back and whisper in my ear what I read in Gifts weeks later, "You will experience shades of color that you never knew were possible."

Three years later and I cannot imagine life without Nichole, even life without Down syndrome. Nichole has come to challenge us in the way we do life, the way we think, and the things that we value. She has taught us much about joy, peace, and unconditional love.

When I look at her I am blown away by her beauty. Not only because of her outward appearance, but because Nichole has the unique ability to show you her soul, her heart. There is so much love in her little being, so much acceptance.

I love her with a fierceness that pushes me to do things I thought I would have been too timid to know. She challenges me to be the best I can be.

It is an honor to be Nichole's mother.

I love you my little rascal. You are a light in my life.