WORLD DOWN SYNDROME DAY 2023

Tomorrow is WORLD DOWN SYNDROME DAY and we celebrate it … because we have been blessed with our son, James! He has the best personality, is witty, fun and just loves life and his family! God has taught us so much through him . He brings more joy to our family than we could ever imagine!

We did not know 26 years ago, what life would be like with James. I remember asking the Lord “Can you help him to let me know what he needs and can you help me to make him happy?” Well, God started answering that prayer in the next few months as we got to know our little guy… His sweet smiles and expressions of joy became so precious to us.

Even before he had words, he was able to communicate to us what he needed. We learned to celebrate every milestone he gained, because he had to work so hard for them.

I thought about my prayer this morning… remembering that moment when I was holding him…not sure of what the future would be like for him…when I asked God to help me to make him happy. I believe He answered my prayer above and beyond…but I realize now that even though I do all I can to make him happy (and responsible, respectful and kind as well) …it is God who makes him so happy and full of joy. It is a reflection of who God is. God is happy…full of joy… and enjoys the moments. He celebrates every little thing and He actually sings over us with joy! So, I look back over the years… to those moments early on with our little guy… How afraid we were for his future…how we had so many questions and I am in awe of what God has done.

James enjoys life! He brings more joy to our home than we could ever have imagined. He loves his family, enjoys his friends, experiences, church, volunteering, art classes, musical theatre classes, working out, playing basketball, WWE, helping at home, dancing and singing, digging in the dirt, and the daily trip to the Dollar Store to get his diet coke and chips more than anyone I know.

God has been so faithful to us to help us on this journey. We are better because of James. We have learned to slow down and celebrate. We have leaned how to be happy over small things. We have learned how to be better cheerleaders for each other. We have leaned how to be generous with our words of affirmation for each other. James has taught us that.

*Several years ago, James asked Jesus to come into his heart and several years later he got baptized. It was such a sweet thing to see him respond to the Lord.

Now, James wants everyone to know the Lord. He volunteers at church and puts all our invite cards together in little bundles and he saves some so he can personally invite people to come to church everywhere he goes. There have been several people that actually go to our church now because he invited them!

He also loves to pray. Many times, I hear him praying in his room for his family, for his friends and for concerns. I’ve heard him say in his prayer (while listening at the door) “God, It’s me.. James”…He has simple faith and it is so sweet to watch him just talk to God.

We could never have imagined what this journey with James could have brought us…but it is good and we are grateful. It has been a journey of faith…learning to trust God… that He would give us what we needed to raise our sweet son. It has also given us a more eternal perspective. James will not always have Down Syndrome… He will live many more years in Heaven with a perfect mind and body….but we have seen on this earth God’s display of His glory and this is just the beginning. May God give you a glimpse of joy and purpose on your journey today.

What Will My Child Be Like?

Our son, James is about to have a big birthday! He is turning 23...He calls it his "Michael Jordan" birthday. Every day for many months, he has been looking forward to this. He counts down the months, weeks and days and every day, he asks "You excited my birthday?Almost here! I me exciting! I me happy!" (his own special and endearing sentence structure) Then he goes on to plan every detail that he wants to happen. This is just a glimpse into the life of James. He is excited over small things and big things. He had a burst of joy last night when he found out we were having hot dogs and hamburgers at church...He does a "happy dance" over so many small things that we take for granted. He enjoys life!

I think back to when he was born. We had no idea what he would be like, and I remember asking the Lord "Can you help him to let me know what he needs and can you help me to make him happy?" Well, God started answering that prayer in the next few months as we got to know our little guy... His sweet little smile and expressions of joy became so precious to us. 
Even before he had words, he was able to communicate to us what he needed.
We learned to celebrate every milestone he gained, because he had to work so hard for them. We cheered him on and learned to slow down and enjoy moments with him. 

Here we are, 23 years later, and I have to say that James brings more joy to our home than we could have ever imagined. He enjoys life, his family, relationships, experiences, church, volunteering, art classes, musical theatre classes, working out, playing basket ball, WWE, digging in the dirt, the dollar store, chips and a diet coke more than anyone I know. I thought about my prayer this morning...remembering that moment when I was holding him...not sure of what the future would be for him...when I asked God to help me to make him happy. I believe He answered that prayer above and beyond...but I realize now that even though I do all I can to make him happy (and responsible, respectful and kind as well)... it is God who makes him so happy and full of joy. It is a reflection of who God is... God is happy... full of joy...and enjoys the moments. He celebrates every little thing. He actually sings over us with joy!  So, I look back over the years... to those moments early on with our little guy. How afraid we were for his future... how we had so many questions.... and how we just wanted him to be happy and I am in awe of what God has done.

God has been so faithful to us to help us in this journey. We are better because of James. We have learned to slow down and celebrate the moments. We have learned how to be happy over small things. We have learned how to be better cheerleaders for each other. We have learned how to be generous with our words of affirmation for each other. James has taught us that. 

I never could have imagined what this journey with James could have brought us... but it good and we are grateful. May God give you a glimpse of joy and purpose on your journey today.

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World Down Syndrome Day 2019

Tomorrow is World Down Syndrome Day! 22 years ago, God gave us our amazing son, James! We have learned so much from our journey with him and he continues to bring such joy to our lives. Several years ago, we started this blog in an effort to encourage other families who had just received a diagnosis. We have not posted lately, but it contains our stories...stories of how God has blessed us through our son. James has made our family better and we are so thankful for him. He is so much fun... he is witty... hard working...loving...and the best dancer! He is now 23 years old, and has graduated from High School. He works out at the gym, goes to classes with an amazing organization called "Art Inspired Academy" here in Springfield, Mo. He volunteers through our church in packing bags of food for "Power Packs" (food we send home on the weekends for kids) and he serves once a month with Ozarks Food Harvest. He has gotten to go the "Night to Shine" Special Needs Prom for the past three years and absolutely loved every minute of it!  He enjoys every day and we are so blessed to see him continue to thrive in so many ways! We join in this celebration because we believe that every child is a gift from God and we are so grateful for James! 

King James Video

http://vimeo.com/89212193

https://vimeo.com/89212193

King James

A few weeks ago, James was crowned LPA King at Hillcrest High School.  (Ladies Pay All...a very prestigious honor for a senior boy who is voted for by his peers)  Two very sweet girls who tutor James in his special needs class, decided that they would nominate James for LPA King and that they would escort him.  He came home telling us about this plan.  We checked with his teacher and sure enough...he was nominated.  We tried to tell him that he needed to be a good sport even if he did not win.  We brought quite the entourage to the assembly on this special day.   When they announced that James Lyons won the LPA King, he was thrilled!  The gym thundered with applause!  Hillcrest High School has been so good to James.  The teachers have been so kind and    the students have made James feel like a rock star! He has friends everywhere!  Every once in a while, some of the coolest things happen to James...and this was one of them!  King James is pretty happy!

P.S.  A video of this special event is coming soon!

James' Favorite Spot...Summer 2013

JAMES' FAVORITE SPOT... Summer 2013

"I wuv summer, Mom... I wuv my cousins...I wuv my birthday...I wuv Dallas...I wuv my "pamily"...I wuv art...Come draw (with) me..." These are words from James this summer.   He had a great time...with a whirlwind of  cousins from the Philippines, aunts, uncles, baby cousins, a Dallas vacation, a week in Branson, a Happy Happy 17th Birthday, and of course...his favorite spot...his art table.  We have a folding table that  stays up most of the summer so James can draw, create, and at the same time watch his favorite shows.  He is a pretty happy camper...He wakes up asking for his chicken and rice (his favorite) and asking where everyone in the family is.  He is love-bug!  This summer, I have been amazed at how his vocabulary and his understanding of what is going on has definitely increased.  There are certain conversations that we just cannot have in front of him anymore.  He has spontaneously started helping to clean up the table after meals, and just seems to have made such gains.  He still can't read very well, but I see him growing in so many areas.   This blesses this Mom's heart...My best story of the summer was on his birthday.  We had several celebrations, but at the family dinner, we had done our big "Surprise" with all the singing, had dinner, and at the close of the meal, he started something I will never forget.  He (on his own) went around the table telling us something good that he liked and loved about every one of us. "Mom...you cute and pretty and make chicken...".  He affirmed each of us very sincerely and then said "Now...you- tell me!"  We have had a special tradition of giving a blessing to our kids when they have a birthday... telling them what we love about them...what we admire about them...how proud we are of them.  Everyone says something affirming to the birthday celebrant.  James took it a step further.  He wanted us to bless him that day... but he started it by blessing us!  This was such a special summer to see James so happy and to  see him growing in so many ways...

Sharing With Future Special Ed. Teachers

  James does not go to school for an education or to follow his IEP...
He goes to school because he knows his teachers love him, for his friends and for LUNCH! Kids with Down Syndrome don't care about learning how to read as much as they want to please a teacher that they know loves them. Thanks to the wonderful teachers at Hillcrest High School that love James.

Eddie and I had the opportunity to share our story with future Special Education teachers at Evangel University and at MSU this week.  *The key to a good learning experience is to connect to the child and to their parents. Find out what the child likes, what he loves to do, what his home life is like, what is his favorite food, and what is  most important to him?  Special children and their families don't have all the experiences and abilities that other typically  developing children have...But they have THEIR STORY...they own their story.  By the time a family walks through the door of a classroom, they have lived through a lot of adversity... they may have been through surgeries, years of therapy, doctor's appointments, stress, and sickness. They are troopers...they have worked so hard to get to this place. They may also be still dealing with grief.   They may have grief over what they thought their child would be like...grief over the death of their dreams for their child. Some are able to go through that valley of grief to a new hope and a new vision for their child.  Some are stuck at one of those stages of grief... like depression, anger or denial.  When parents walk through the door, they have a lot of fear.                                                                                             

-They are afraid that their child cannot learn.

-They are afraid that the teacher won't like their child.

-They are afraid that their child will be bullied by other kids.

-They are afraid because they are entering this new world of "Special Education"... the reality that their child is really developmentally delayed.

Many families have gone through such stress that the marriage didn't survive.  The last statistic that I heard was that 85% of the marriages in a family with a special needs child went through divorce.  Many mothers have to work full time, and it becomes very stressful trying to get to work and take care of the extra needs of the child.
It is not always easy to deal with our kids when they misbehave. It really helps when we have a teacher that doesn't assume the worst when he doesn't act right. We are in a partnership with the teachers in an effort to teach our special children how to live life and how to behave in an appropriate way.   I always ask James' teachers to share with me when he doesn't act right because I want to teach him to be a good boy at home, school and church.  I am so appreciative of his teachers who share issues with me with a good perspective.  They don't label him as a bad kid... they share the behavior, I deal with it and reinforce our rules for behavior.   We hope he learns and gains through it.  

When a teacher understands the family dynamics of the student, and connects to the student and parents... believing in the child, it opens the door to help the child succeed. They really don't come to school to get an education. The teacher that does their job but does not connect to the student and make a relationship with them will spin their wheels.  My James is more likely to work hard for the teachers that he knows loves him.  

Teachers and therapists have the opportunity to share hope with these families.  Share every small gain...every positive thing that you see in the child with the parents.  Sometimes, we can get so discouraged when our child is not learning to read...James is still "an emerging reader" after all these years... You may not be able to give glowing reports about their educational achievements, but you can share about how kind they were that day, how they finished a project, how they followed instructions, or had compassion on a fellow student.  Celebrate every gain, every act of kindness or good behavior. Share the funny or cute things they did...anything you appreciate about them.  Let the parent know you see the good job they as parents are doing.  They need to know they are doing something right.  Every time I go to the eye doctor with James, he notices how James is gaining something in his development and tells me that we are doing such a good job. That will keep me going for a long time.  Let the parents know how much you like their child...they really need that.

I am very proud of James.  He is confident, compassionate, he is happy, loves his family, church, sports, music and life.  I will continue to work hard to help him be everything he can be, but I am at peace...I pray that God will give him everything he needs to fulfill his destiny.  I pray that God will give me the wisdom when to push him to do a job and when to take the pressure off, relax and just enjoy my sweet boy.

*I am so thankful to "Teacher Pow" (his first teacher in the Philippines who absolutely was amazing!), to Mr. LaGarce (his wonderful elementary teacher), Mrs. Weaver and to all his great Hillcrest teachers.  They have played a huge role in his life.  James told me this week..."Coach McCullough calls me "James-amoney"...I "wuv" that...I "wuv" her."