Mar 20 2019 62 mins
Jamie shares the 5 lessons she learned having a son with Down Syndrome. She also explains how God helped and gives IEP advice.
Jamie’s Bio
- Wife and mother of three–her oldest has Down Syndrome
- Meme to her two treasures
- Lived most of her live in North West Arkansas
- Also lived in a small town in North Carolina
- Worked with children doing home therapy and as an autism specialist
- Teaches Pre-K at a Mother’s Day Out
- Loves serving in her church
- Loves watching her kids to the things they love: baseball, soccer and Special Olympics
- Loves the beach and has been swimming with dolphins and 4-wheeling
Jamie’s Story
At the age of 18 Jamie found herself expecting. She married the father of her unborn baby and took very good care of herself during her pregnancy–just like overly cautious first-time mamas do. She had several ultrasounds throughout her pregnancy, and they were all normal.
She gave birth to her first baby, an 8 pound 8 ounce boy who they named Tyler in February 1990. A couple of hours after he was born the medical staff took him back for routine tests. After about 4 hours they finally asked the nurse where their baby was and she told them that their pediatrician would be in soon to talk to them. At this point their minds just started going a thousand miles per hour wondering what could be wrong.
Tyler’s Diagnosis
When their pediatrician came in he told them that they had detected a heart defect in their son. So, they were going to run some more tests on him and have him go down to Arkansas Children’s Hospital. Four hours later, their pediatrician returned, this time with their baby and confirmed that he did have heart problems which included several holes in his heart. He also was missing a valve that was connecting his chambers.
The doctor also told them that this particular heart defect is associated with Down Syndrome, and that they suspected that he had Downs but they couldn’t confirm it yet.
Jamie confesses that as they told her all of this information, she was more concerned about the heart defect. She had been blessed to grow up with some friends who had a baby with Down Syndrome so that wasn’t as scary to her. She felt shocked and scared, of course and they started praying.
Their doctors were very shocked that she had a Down Syndrome baby at age 18–that is usually something that happens to 40-year-old women. So there was also some mom guilt associated with her son having Downs–even though she knew she couldn’t have changed anything genetically, she still felt guilty like maybe there was something she could have done to help Tyler be different.
So, they sent them home with their baby with specific instructions to immediately return to the hospital if his lips started turning blue. Of course this made them scared to even sleep at night.
Arkansas Children’s Hospital
They were also supposed to go to Arkansas Children’s Hospital in three days. Once they arrived they found out that Tyler’s jaundice was bad enough that they had to put him under the lights for a week before they could even look at his heart problem or do genetic testing for Downs. This turned their one day trip into a three week stay!
They finally got the genetic testing back and the doctor confirmed that Tyler did indeed have Down Syndrome. This doctor also told them that their son would never read his name, ride a bike, go to public schools; the list went on. This made Jamie mad and she decided this doctor couldn’t tell her that her child was NOT going to do something.
They may have swallowed half the pill when he was born knowing that he had heart problems, but the diagnosis was like getting punched in the stomach again.
At 8 weeks, Tyler had major heart surgery and the doctors repaired his heart. This was a time of seeing how blessed they were even in their scary moments.
Lessons Learned
Lesson #1 Count Your Blessings
While they were at the hospital they met another little girl with Down Syndrome who was three and she was on her 17th surgery and has spent every single birthday in the hospital. So, even in her valley, Jamie felt like God was showing her that things could be worse and she should continue to count her blessings.
She tried to always find something good within all the bad.
Tyler recovered well from his heart surgery. They were at the hospital for 2 months, which was pretty remarkable considering all the work he had done.
Lesson #2 The Importance of Early Intervention
Shortly after they were home Jamie contacted the Benton County Sunshine School. This school is an early intervention school for kiddos with special needs and they also have typical children there as well so that the special needs kiddos can interact with peers their same age.
So, the Sunshine School did a home evaluation on Tyler and he qualified to start receiving therapy. Tyler started home therapy when he was three months old to help him learn simple things like tongue thrusting, head control and other simple things. The Sunshine School was very excited to be able to work with him when he was so young because the sooner they get started on therapy, the better it is for these kids.
Watching and helping the therapists actually influenced Jamie’s career change. After graduating from high school she wanted to be a hairdresser, but now she decided that she wanted to work with special needs children.
When Tyler turned 3 and began preschool at the Sunshine School, Jamie began working there as a home therapist.
Lesson #3 Determination to Prove them Wrong
When someone tells you your child won’t do something–prove them wrong!
A funny story about the genetics doctor that told them their son would never be able to do anything—he wanted a one-year-checkup with Tyler. Tyler walked into his office and the doctor handed Tyler a ball. Tyler threw the ball back to him and hit him right between the eyes. Then Jamie told him, “Don’t ever tell me my child won’t do something!” And they left and never went back.
This is the story of Tyler’s life. He is very determined and capable. When he wants to do something he is going to do it. He went on to ride a bike, play softball, and basketball with the Special Olympics, he graduated from high school, and he has attended college courses at the community college
Jamie acknowledges that not every Downs child will be the same. They are going to function at different levels. She encourages people to find and embrace their children’s strengths–whether they had special needs or not.
Lesson #4 Prayer
When asked what her prayers were like upon her son’s diagnosis with a heart problem and with Down Syndrome, Jamie had some really good tips. She said she had learned in her prayer life that it is important to thank God first before asking him for something.
For example, the doctors told Jamie that it was a miracle that Tyler was such a big baby or his heart would never have survived a vaginal birth. She thanked God that Tyler was alive.
When it came to asking, she prayed that God would help them be the best parents they could be. They were new parents, and they needed guidance. Jamie said they basically told God that He gave them this child, and now they wanted to know what to do.
Lesson #5 The Influence
God has used Tyler to influence many people over the course of his life. Jamie became his advocate. She had to fight tooth and nail to get him integrated into the public school classroom. To this day she keeps in contact with several of his teachers who have messaged her and told her what a blessing it was to have Tyler in their classrooms because he taught them to be more patient.
Special needs kiddos have the amazing ability to teach parents, teachers, and anyone with whom they interact lessons they wouldn’t have learned any other way.
Lesson #6 “Bad Moments Don’t Make Bad Mammas”
One of Jamie’s favorite Bible Study authors is Lysa TerKeurst and she wrote this book/Bible Study called “Unglued.”
In this Bible Study Lysa said, “Bad moments don’t make bad mammas.” This has become Jamie’s life quote–especially now that she is dealing with a 12-year-old pre-teen. We are all going to make mistakes–especially in parenting, but this doesn’t make us bad mammas.
Advice
There have been many occasions when Jamie has been asked to come and talk to the parents who have just found they have a baby with Down Syndrome. Jamie got her first phone call when Tyler was about three-years-old.
Here are some of the things she wanted parents of Down Syndrome Children to know:
- It is hard to articulate how much love these kids have and their joy for life.
- Is it easy? No, but she doesn’t think it has been too much harder than raising her typical children.
- The doctors are going to tell you all the negative things. But remember the possibilities and Tyler throwing the ball at his genetics doctor.
- She encourages them to get their child early intervention.
- Sometimes when she visits parents it is easy, and other times they are not ready to hear what she has to say. They are still processing everything–that is okay. It takes times.
- She usually takes Tyler with her when she visits these families because it is amazing to watch him and see how well he communicates, walks and interacts.
- See the potential in every child.
Now Jamie doesn’t take the credit for how well her son does. She gives the credit to God and the Sunshine School for helping him learn the skills he needed. She wouldn’t have known to teach him sign language to help him communicate at first.
Jamie is also quick to remind people that “not all children with the same diagnosis are going to function at the same level.”
Additional Advice
A week into parenthood Jamie’s pediatrician gave her some very good advice. He told her that you can take a normal child and not love or nurture them and they will have challenges. He also told them that they could take their son and love him and nurture him and watch as he becomes the best that he can be.
It is also normal to grieve the “expected child” they pictured in their mind but don’t have. Be gentle as you process any child’s diagnosis. Anger is also a normal part of the grief process.
Be sure to get help and therapy along the way. There is are so many specialists and therapists there to help you. Don’t ever feel like you have to go through this on your own. You will probably forge friendships with these people that help you raise your child.
What Advice give to Moms and Dads as they go to IEPs?
An IEP is an Individualized Education Plan. It is a legal document drawn up for special needs kiddos that details how the school will accommodate them and help them be successful in the classroom setting.
- “You will forever be your child’s voice, their #1 fan, their biggest advocate.”
- Do not be afraid–be bold. Let your wants and your child’s needs be known. Be aware it is a big table and you are at one end and the teachers and therapists are all at the other end.
Example: At one of Tyler’s first IEP meetings in the public school they wanted to label him “mentally retarded.” Jamie told the IEP team that his diagnosis was Down Syndrome, not mentally retarded. Basically the school would get more money if he was labeled mentally retarded. Jamie said she would NOT agree to this, and so it didn’t go on Tyler’s IEP.
3. As a parent, you have rights in the IEP meeting. Know your rights. You don’t have to sign the IEP if you don’t agree with it.
4. The IEP can also be changed.
The school fought Jamie on getting Tyler a 1-on-1 aide in the public schools because they thought he should be in a self-contained special needs classroom. But Jamie stood her ground and got his IEP changed so that he had a 1-on-1 aide.
5. Request a draft of the IEP before you to the IEP meeting. This way you know what is going on and you can hammer out potential problems beforehand.
6. You can bring someone with you for support so that you can have someone with you on your side of the table.
Other Tips or Thoughts
Siblings
Jamie and her husband had a daughter about 2 years after Tyler was born. The thing that was hard and frustrating about that was the doctors going on and on about all the testing that they needed to do.
She finally had to tell the doctors that if God wanted to give her another child with special needs that she was okay with it. All of their testing was not going to change her mind.
The doctors freaked out even more when she chose to have her third child at age 35. She says they acted like she had lost her mind!
Tip: Don’t be afraid to have more children after you have a special needs child. Both of Jamie’s subsequent children were typical children.
Jamie’s daughter Bailey, even though she was two years younger than Tyler, was always more a big sister. She did get used to helping her mom. They tried to never treat their children any differently one from another.
Jamie recently asked Bailey if she felt that she had asked too much of her growing up and having a sibling with special needs. Bailey responded, “Oh no, mom, you did fine.”
The nice thing about siblings of special needs kiddos is they are really not afraid to help anyone with special needs. Their heart seem to be bigger and they see all children differently. They have more of a sensitivity to the special needs population and they can see the good in them.
Favorite Bible Verse
Jeremiah [29:11] Is Jamie’s life verse. “For I know the plans I have for you,” declares the LORD, “plans for welfare and not for evil to give you a future and a hope.
This verse gives her hope. She knows that God knows Tyler’s future. When she fears for the future, Jamie places her hope in the Lord.
There are times when Jamie has felt hopeless and helpless, but when she let go and let God it all usually works out.
Final Thoughts
Jamie remembers bawling her eyes out at IEP meeting when the school told her that he son was at a 3-year-old level. At times like that she reminds herself that Tyler is doing more than the genetics doctor told her he would ever do.
At age 29, Tyler now has a checking account, a cell phone, and he is doing great things.
Jamie feels that the reason that he is doing so well is because she gave him to God as a child. She knows she is Tyler’s mother here on earth, but she knows he is really God’s child. So, she told God that He was going to have to help her know how to parent His child. As she gained that perspective, Jamie felt that some of the pressure came off of her as a mom. God was in charge.
When have you felt God guiding you as you raise your child?
Growing up it was easier to help him make decisions, but now that he is over age 18, they haven’t been able to get guardianship of Tyler. He is just too high functioning. At this point Jamie has had to turn it over to God because she can’t help him as much as she used to.
Tyler especially enjoyed going to college when they were in North Carolina. They paired him up with a college student who was going into Special Education, and they would take him around to his classes. He loved this!
He has also been able to work at places like Pizza Hut and the movie theater.
Suggested Resources
Jamie admits she is a Google nerd. If she or her family members ever get any kind of diagnosis, she loves coming home and reading all she can to learn about it.
For those who have young children who have just received a diagnosis, Jamie encourages you to get early intervention as soon as possible. You can find out about this through the public school system or your pediatrician.
The other recommendation is to build your tribe of people who will help you. Find others with the same diagnosis that you can chat with.
Build a Tribe
Several months after Tyler was born they went to a 4th of July fireworks celebration. At that even she met 3 families that had children with Down Syndrome. She and one of the mothers really connected that night and they have become really good friends, and Tyler and their son have also become really good friends.
So, don’t be afraid to reach out to other families and say, “Hey, I’m new to this and I need some help.”
The beauty of learning about a diagnosis both online and by talking to others helps the fear of that diagnosis disappear. So, connect with others. Get human interaction. Don’t hole up and hibernate. Get involved with others.
Encouraging Children to Reach Their Full Potential
Another tip is to let your child get involved with whatever they are passionate about. Tyler was the manager of his high school’s basketball team. The final game of his senior year, they put him in to play, and EVERYONE was cheering for him–even the other team. There wasn’t a dry eye in that entire room! It was a sweet experience.
That is the power of having these special needs kids. They can touch even the toughest teenagers. “They love so big!”
That is probably what Jamie would love for every parent to know upon diagnosis, is that even though it can be so hard, these kids love so purely and so big! Those moments make it worth it.
So, find your child’s strength and help them be the best they can be. Find what they love and go with it!
Jamie’s Contact Info
https://www.facebook.com/jamie.cobbmiddlecamp
Jamie’s email is also available upon request. Please contact me (Tamara) for further information.