My Two Cents

Seven years ago my life was changed forever.

My husband and I have grown closer and stronger through learning about our child.

Walking with Phoenix so far has created so many memories and life experiences I wouldn't trade for the world.

Family and friends are your biggest fans.

The friends you make and the people you meet will support you through anything.

Being the parent of a child with Down Syndrome is an amazing experience that only a few people are lucky enough to have.

Make Memories.

Play Together.

Grow with one another.

Help them reach their goals.

Watch them create and pass goals you never thought imaginable.

Every child has a story.

Every child has a journey.

Walking with Phoenix is my journey.

The footprints he has already left on my heart will never fade.

I'm excited to see what is in store for our futures.

Gotta keep on walking!

Tips I Would Have Loved to Know

I'm writing this blog because I wanted to share the life and journey of my child, but also to help others in the same position I am in.  I am a loving mother of a child that has been diagnosed with Down Syndrome.  My husband and I have learned alot along the way, but we didn't have all the answers.

If you are reading this and are a parent of a child with Down Syndrome I have a few words for you:

1) You have been entrusted with a gift.

2) You are lucky and blessed with an amazing child who will amaze you EVERYDAY.

3) Enjoy every minute and memory you get with your child.

4) When the going gets tough, remember YOU ARE NOT ALONE. 

Don't be afraid to ask for help or seek out answers about your child you are struggling with!

There are TONS of parenting books that can aid with first time parents of a child with DS.

A few that I found and liked are listed at the bottom of my glogster; here's the link to that:

http://www.glogster.com/edit/g-6l7a26bk2d4d2d96l0vb6a0

When Phoenix was younger we sought out professional services for speech and learning therapy and every road led us back to the Regional Center of Orange County.  We took Phoenix there and worked with him constantly and he flourished in his early years.  Once your child reaches the age to start schooling, the public school district becomes the main provider of help and services to attend to your child's needs.  It is comforting to know that the school districts are aware of developmental conditions and want to help your child grow.  Phoenix did have a bit of trouble adjusting to the public school system but we were able to participate in behavior management classes through the Regional Center of Orange County and that helped him a great deal.  

I love this organization and since I've been blabbing so much about it I'll give you the link:

(The Down Syndrome Association of Orange County website provides support, resources, services, and recreation opportunities for children with DS.)

http://www.dsaoc.org/regional-center-orange-county.html

There are so many resources that I found helpful when looking for help, answers, support, or just a friend for Phoenix and sometimes even myself.  Here's a short list of a few of my favorites:

The National Down Syndrome Society website provides support to expecting and current parents of children with DS.

http://www.ndss.org

The National Institute of Child Health and Development website offers information on the characteristics and symptoms of DS.

http://www.nichd.nih.gov/health/topics/down_syndrome.cfm

The National Association for Down Syndrome website gives facts, resources, support groups, and programs to people seeking any information dealing with DS.

http://www.nads.org

Downsyndrome.com is a resource that allows for a community to bond over questions, blogs, research, and more for inquiries dealing specifically with DS.

http://downsyndrome.com

Riverbend DS Association is an excellent resource for anyone (including teachers) seeking information, therapies, life planning and more for children with DS.

http://www.riverbendds.org/index.htm?page=derayeh.html

There will be times where finances get rough but that is the case in any situation.  My husband and I have definitely learned a few lessons on budgeting on our journey with Phoenix but it is all worth it.  Your child is worth more than money.

The best piece of advice I can give to you if you are a parent or an expecting parent of a child with Down Syndrome is to stay and focus on the positives.  Your child will blow you away with what they are capable of and will make your heart grow twenty times bigger than it already is.  If you are stressed, frustrated, or have a negative attitude, your child WILL notice.  You don't want to be the obstacle that is holding your child back.  Stay Positive!! :)

More Alike than Different

A child with Down Syndrome is a normal child.

Yes, they may look slightly different or learn at a different pace, but they are still a human being.

A human being with feelings, emotions, likes, dislikes, talents and attitude.

I was reading through the OC Register the other day and I found this quote in the Mini Page:

"Suppose you’re making sugar

cookies. You 

use flour, sugar, 

butter and other 

ingredients to make the cookies. But if you add chocolate chips to the batter, you won’t have sugar cookies anymore. All the cookies will have chocolate chips — you can’t take them out.

When that extra chromosome gets added in, it changes almost every cell of the body, just like the chocolate chips show up in every cookie.

You still have a cookie, but it’s a little bit different."

                      EXACTLY!

Children with DS are the same as children without disabilities, just a little modified. :)

When Phoenix was younger he was very slow to the normal timeline a child follows.  We started him off with American Sign Language extremely young to give him more opportunities to communicate not only with us but with others.  Signing little actions and words while saying them simultaneously helped us communicate with our little guy SO much.  It was incredible to see him progress and have those skills to talk with us even if he couldn't yet form the words.

We chose to put Phoenix in public schooling when he was of age because we wanted him to be treated like the wonderful child he is.  Over the years we have run into the teasing and bullying because his looks are a little different than those of his peers.  At a young age kids don't understand what a disability is or why someone has one---all they can see is that the child is different.  A child with DS wants to be known for their abilities, not their disabilities...wouldn't you like the same?  With the help of some very understanding and amazing teachers, Phoenix and his classmates have grown to know and understand each other.  He is not treated any different than any other child and he has tons of friends!  

He does struggle a bit with learning the curriculum at the pace of his peers, but he really enjoys school.  On the other hand, Phoenix does have trouble staying focused in a classroom setting.  Once he gets past whatever may be distracting him, he excels in his schoolwork.  His reading and comprehension levels are fantastic and some of the teachers even say that they are above grade level!  

The severity of Phoenix's condition is very moderate so we aren't as experienced with obstacles that can come with a DS diagnosis such as heart conditions, seizures, or hearing loss.  We have experienced many of the normal sicknesses that any child can get from school, but a heightened level because his immune system isn't as strong as it should be.  Recently we have been looking into getting him glasses because his vision is starting to diminish.

Phoenix is growing.

Phoenix is learning.  

The things he achieves soar way past what we could ever dream.

He surprises us with how much he knows and what he is passionate for everyday.

I am always so eager to see what Phoenix will do next to amaze us!

   

How it all began

Once upon a time, not so long ago, my husband and I were blessed with the news that we were going to have a baby.  Little did we know that this child was going to open up a whole new world of experiences and touch our hearts forever.  I will never forget the day when the doctor told us we were going to have a little boy.

A little boy that we could call our own.

A little boy that would grow up to be a man.

A little boy that would put a smile on my face every morning.

A little boy with Down Syndrome.

"For you created my inmost being; you knit me together in my mother's womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."
-Psalm 139:13-14

I fully believe that MY God does NOT make mistakes.

Phoenix is my proof of that.

This is Phoenix at 6 months old.

Phoenix after the unique bird that continues to live with a renewed youth.

Phoenix because we knew our child would fly past the stars to reach goals we never thought possible.

Bright blue eyes, blonde hair, and the biggest smile you have ever seen in your life.

Our little Phoenix.

This little child with a huge heart has taught my husband and I SO much about the condition he has and has never ceased to amaze us with that he can accomplish.  Life with a child that has a disability can be difficult, but a parent must not take the time they have with their child for granted.  A child is a precious gift and you should cherish every moment you have with them.  We love Phoenix with all our heart and would not trade our experiences with him for anything in this world!

Phoenix just turned 7 this past June.

He is a healthy, happy, NORMAL, little boy.

Yes, I do admit we have had our struggles and our ups and downs. 

But our journey is a special one.

A special little boy with a special little story.

Come join us on our journey---we are all just walking with Phoenix.