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."

Happy New Year!  No one has enjoyed the holidays and celebrations like our James!  He has been so excited about Christmas, presents, everyone coming over, and for his grandparents being here this time.  As we go through the years on our journey with James, I have to say... He enjoys life!
He celebrates each moment with much enthusiasm.  From the
gifts that we bought him this year ( the "wrestling dudes", shirts and my personal choice- "Jesus Calling" for kids) to welcoming everyone into our home, showing hospitality, he loved it all!  He loved the Christmas trees and decorations, he loved times to sit on the couch with all the Christmas lights and just enjoy the moment.  All in all, he loves life.  As I look back over this last year, I am grateful for several things.  He is becoming easier to reason with.
He is more compassionate.  He is showing a desire to be a good man.  He prays spontaneously for those who are sick or sad.  We believe that he sincerely asked Jesus to come into his life.  We were not sure, but we see him wanting to follow God and trust it in God's hands.  I am noticing that he just makes his bed without prompting.  He wants to help in the kitchen (especially with putting away things in tupperware).  He informed me that the precious "Winnie the Pooh" chair that he has had since he was a baby is no longer needed because he is an adult.  He is working on not flirting with every cute girl he sees... we want him to be a gentleman.  All in all, we see him growing and are happy for that.  What does his future hold?  We don't know... but we continue to pour into his life everything that we know to do, and trust that he is in God's hands and that is ultimately the best place to be!  At 16, James is loving life and can't wait to turn 17!

It's A Family Affair

We celebrated National Down Syndrome Month by thanking our family.  We are grateful for our precious James and for our wonderful children that have been on this journey with us. Thank you Tiffany for being such a great big sister... you have loved James with us... you have taught James how to play baseball, basketball and have been such a blessing to him and to us all these years. We celebrate James, but we also celebrate his brothers and sisters that have poured into James' life all these years....

We are so grateful for Holly who has played such a great part on our journey with James.  Holly (James calls her "My Princess") has such a gentle, quiet spirit with him. She calms him down with her gentle nature and they love each other dearly. Holly has taken such good care of him and has had a sense of looking out for him and protecting him. Thank you, Holly for loving and taking care of James all these years...He “wuvs” you!   You are amazing!

Last week, James got to escort one of his friends who was in the Homecoming Court! Robert put together his outfit. We thank  Robert who has grown up just loving and being such a great big brother to James. James calls him "Bobert" and looks up to him so much. Rob has included James with in his group of friends and invites him to go with him on so many activities. Thank you, Rob for the way you love James and for all the sweet things you do for him. We are so blessed.

Lastly, we celebrate Coco's contribution to James life...She was only 4 years old when James was born and was very much a part of his initial health crisis when we had to go back to the States. She came to every therapy session and helped us to do the therapy at home just naturally. James loves to prank her and gets so much satisfaction from joking her! I am so thankful for Coco and her sweet attitude of care and acceptance of James. She has had to share all the attention from us from when she was four and was so sweet about it. I love seeing them just love life together!

Our Life With James...God's Provision in the Early Days

It has been a while since we  shared our stories about James...Eddie had been sharing current stories and I was going back to remember the early days. We do this to remember our journey but also to be an encouragement to others who walk this journey as well...

So, back to the early days...We were missionaries in Manila, Philippines when James was born.  We received our diagnosis...we went through what everyone else feels when they hear that their child has Down Syndrome. We began processing and dealing with the new reality and our grief over what James could not be. It just killed me to see the Formula or baby powder commercials on TV... it kind of pierced my heart that our little baby was not like them... and he was not healthy or well... he could not suck so he lost weight and went down to 4.8 pounds when he was 6 weeks old. We took him from doctor to doctor to find out what was wrong. They really didn’t know what to do to help him.  The director of our Mission Agency was keeping in touch with us as well as our home pastor.  They both urged us to come back to the States for help.  We carried James back on a pillow because he had lost all strength and was close to death.  We almost lost him several times.  We begged God to keep him alive... We arrived in Springfield, MO where my mother lived and we took him straight to the hospital.  It was amazing what they could do for him.  They were so sweet to him and they organized just what he needed.  A speech therapist taught him how to eat!  They worked with him for days and taught me how to feed our James...He still would have times of not being able to breathe and get choked so easily.  I begged God so many times to save our baby’s life. When he started to gain a little weight and to perk up a little... his diagnosis was no longer in the forefront... he was our “Sweet Baby James” and we were so in love with him.  I wanted to learn as much as I could to know how to help him be his best.

We learned about “early intervention” and how it can help all special needs children and their development.  We spoke with a developmental specialist and she spent a lot of time with us just educating us and letting us know what we needed to look for when we got back to Manila.  We bought books and started on that journey of learning more about this thing we had been afraid of for so long.  I never had met anyone with D.S. before we met our baby...so everything was new....We went back to Manila just hoping and praying for what we needed for James.  

When I look back to that time, I am still in awe of the way that God supplied exactly what James needed when it was time.  We learned about a new Developmental Specialist who had come back to Manila after her training in London.  She was great! She helped us find therapists and would evaluate him every 6 months.  Our physical therapist was great, but she could only see him once a month. Our occupational therapist was very good too, but she could only see us every three months, and back then, there was no speech therapist.  We asked God to help us with what we needed for James...to our surprise,the people who built  the very next house in our subdivision had an adult daughter who was a physical therapist and could see him every Saturday...was this a coincidence?  Then when we needed him to see an occupational therapist more often, I got word that there was a new missionary couple coming from Australia... and guess what she was! An occupational therapist!  She came to our home every week and James just loved her!  Well, we needed a speech therapist (and remember there was none to be found...) and Eddie came home from church one day telling me “Cindy, there is a therapy center going in across from our church... you ought to go check it out”  Well, yes... they had a speech therapist!  

It goes on... When James turned 2 and 1/2, our developmental specialist told us that this was a wonderful window for James to go to school.  She told me that there was a little school that would be just perfect for him but it was just so far away.  I asked her where is was... and to our surprise, it was in the adjoining subdivision... 3 minutes away!  In a city of 17 million people, where there are not a lot of resources for special needs kids, God was providing for our little guy!  I will never forget the day I interviewed the teacher “Teacher Pow” (short for Paula).  She told me that all her students came to her as non-verbal.  She said that she teaches them with everything she had, but she also believed in God’s power and she would lay hands on their heads and pray for God to help them speak...She said all her students were able to speak when they left her.  I could barely hold back the tears...of joy...of how God was so supernaturally providing what James needed... Can you imagine...God cared about our little one who almost didn’t make it. He rescued him, brought along doctors, therapists and a whole new set of people in the Philippines to take care of him...I am still in awe over that...                           This opened up a whole new world for us...a world where many families did not know what to do for their children. We got connected to the Down Syndrome Association in the Philippines and found out that they needed leaders for support groups.  So we started a support group for the eastern side of Manila.  We loved getting to know these families. We brought in therapists to speak, shared resources and tried to encourage and inspire them. It was so rewarding to see families that seemed so hopeless start to dream for their children again.  They all loved their children... they just were stuck in their grief.  I love how God helps us with our journey of grief.... I look at it this way.  We all have to go through this valley of grief... we visit several stations like shock, anger, being overwhelmed, sadness, disappointment as well as other feelings you feel when you face your new reality. It felt a bit familiar... it reminded me of when I had lost a dear loved one... and yet I got to keep James... my initial dreams for him had died... but his life was certainly worth living... he became such a joy...so precious... I realized as I got to each station in that valley of grief... I would experience it... process it with God ... feel the emotion, but I chose to not camp out at one of them... because I knew that if I authentically went through each one... asking for God’s grace, HE would lead me to a NEW HOPE and a NEW VISION for James.... yes he still had D.S., but he was also a darling little baby that would develop into such a great young man. The grief would be turned into joy.  We looked into book of James in the Bible where is says in James 1:3, “Consider it all joy when you ....

God was asking me to accept this baby by faith because only He knew what joy James would bring us... we had to believe (and not see) that God had this in His hands... He still could be trusted... He loved this baby and us... He wasn’t punishing us.  He was blessing us with this baby... We had no idea... what joy our James would bring...

Our New Reality..

Cindy's Post #3  


Our New Reality.. When Others Don’t Know What To Do or Say

As we made our way through our new reality, we continued to go to doctor’s offices, visit therapists, and find out what we could do to help our baby.  We had so much to learn in such a short period of time.  We were so grateful to the Regional Center  and DCO in Springfield, MO that taught us all about Early Intervention and what therapy to look for. They gave us a list of good books to read, and were so helpful and hopeful as they led us down our new path.  

Our friends and family were very supportive and kind as they learned to love James.  A few acquaintances had some responses to James’ diagnosis that were really made out of ignorance and just not knowing what to do with our new reality.  I will never forget the day that we were in a doctor’s office waiting for him to see our little guy... I got up to read something on the bulletin board that gave me some very wise counsel. The article talked about what to do when people don’t know how to respond to the fact that you have a special child.  Sometimes when you are out in public, people struggle to know what to do or how to talk to you.  I personally think they just have never met anyone with Down Syndrome or whatever disability they are facing.  They don’t know what we know. That our child is precious... that he is not primarily identified by his disability... he is James.

The author went on to say “Whenever you see that people don’t know what to do or say,  YOU model  it for them... that you love your child... reach down and give him a hug...or a kiss... and smile... let them know that you are ok with this.... you have grace for the situation and then smile at them.

When friends ask about your child or if they say the wrong things, just realize that they just don’t know... they have never had to deal with it.  So again, we, as parents need to model for them what to talk about.  They may keep saying “I’m so sorry, so sorry you are having to go through this...”  When this happens, accept their attempts to talk with you, however, you may need to lead the conversation.  Tell them something positive with regard to your child’s development and progress.  Providing a positive talking point helps to overcome the awkward moment and gives direction for a conversation. I remember saying “Well, this week, we have been learning all about Early Intervention and the therapists have been so kind and encouraging.  He is starting to gain a little weight, so we are very grateful.”  Not everyone has the grace or the capacity to know all the details that you are having to deal with... and that is ok.  We can show people with our spirit and actions how to deal with the news and the new reality.  If we are having a hard time with it that day, be honest with friends and say, “You know, we are having a hard time dealing with ___________, but we just love him so much.”

Ask your friends for prayer.  We don’t have to be up all the time, but we can’t expect people to know exactly what to do and say.  We need to extend grace to them... they don’t know YET what a great little baby you have...Just think, by seeing you with the special grace that you have for your child... you might have just changed their ideas about families with special needs children.

Overwhelmed with the Diagnosis...

Cindy's Post number 2

As I think about those early days with our James, I am so grateful for the people who helped us as we started the journey. I can remember the day that the doctor left our room after letting us know about James’ diagnosis. We were shocked and overwhelmed... not knowing what to do... what to think... how to take another breath...here was this precious baby boy...would he grow up to have a blank stare in his eyes? Would he not be able to communicate? Would he ever be able to have fun? What would our family think about him? How would people respond to him... or stay away from us... now that we had a special child. I recall Eddie and I saying “I guess we will never get to go to Disneyland with him.” I’m not sure why we thought that, but somehow, we must have thought the days of family fun were over...

We were somehow trying to absorb this news when I started thinking out loud “It must be my fault... I’m not a good mother... I yell at my children sometimes...I must have done something wrong.” I will never forget my friend Lora, who was with us at that moment taking my face in her hands and saying “Cindy, we’re not going to go there... it is not your fault.” She went on to just “be with us” that day, loving our baby, letting us process our feelings, and sometimes just being quiet. We moved from our initial feelings to concern for his failure to thrive because of his delay in his suck/swallow/breathe issues.

When we went back to the States and made it through the health crisis, a family with an 11 year son with D.S. came to visit us. I will never forget that day. As we got to know them, I listened to their story and took in everything about their son. I asked him which video he wanted to watch with our daughter, Coco. He chose one, sat and watched with her. I offered him some brownies and asked which one he wanted... the ones with m&ms or without. He confidently told me “I’ll take the m&m brownies.” In the next breath, he looked up at the light fixture and said “You got a light out.” I was quite impressed with this boy... my very first person to meet with Down Syndrome. He was pleasant, humorous, able to make choices, enjoyed watching the video, and seemed quite happy. His parents told us their story. I remember the Mom saying “If I knew what my son was going to be like now, I would never have cried...” They were so real with us with their joy and their challenges... At the end of our visit, I told Eddie “You know, this 11 year old boy reminds me of our other son who is about 6. I can live with that.” It really gave me a vision of what James could be like. We will always be grateful to the Pentecost family that helped us that day. It was our turning point. We then had an idea of what James could be like... of what we could look forward to. By the way, we did go to Disneyland with James and the rest of the family after all... he was thrilled to see Pooh and Tigger... a good time was had by all.