Exploring Special Needs with Connie Hughey & a Giveaway too! :-)
Published May 20, 2011Do you have a special needs child in your life? Or does someone close to you? If so, you are gonna love today’s post!
Our extended family on both sides includes some special needs children and adults. My close friend Tammy adopted twin boys 15 years ago, one who has Down’s Syndrome along with other special needs. I often ponder how to best help people living day-to-day with this issue. Perhaps you do too.
Meet my sweet cyber friend Connie Hughey as she shares from her heart on this topic and offers a giveaway too. You can learn more about Connie at her encouraging blog www.inthewaitingroom.net.
Now, meet Connie!
When I gave my life to the Lord at the age of 19 I never could have imagined the direction He would take me in as I grew in my faith. I always wanted to be a wife and mother. I never expected that one day I would be raising a child with special needs.
This summer my husband, Mark, and I will be celebrating our 30th wedding anniversary. We are the parents of two great kids, John Mark (26) and Alyssa (24), and we live in Bolingbrook, a Chicago suburb, where Mark is a senior pastor.
Our son, John Mark, was born with a complex genetic birth defect called DiGeorge Syndrome that includes Spina Bifida and ulcerative colitis, along with many other physical and developmental challenges which have required a lifetime of medical care.
Connie, what is life like at your house these days?
John Mark and I spend most of our days together because he cannot be left alone due to a seizure disorder. Since he is an extrovert, he thrives on getting out of the house to go to Sunday services, youth group and any other church activities that are available. So, I am his personal chauffeur!
Right now we are very excited about a five week trip that we are taking ’out West’ this spring. After being in full time ministry for the past 26 years my husband is taking a sabbatical, which is extended time away from the daily demands of ministry and preaching. Our trip will include visiting family and friends, and taking our time exploring the western part of the US.
You spend a great deal of time raising a special needs child. What is important to remember when trying to accomplish that oft times difficult venture?
It is most important for me to remember who I am serving when I am caring for John Mark.
Four years ago, as I sat in the hospital at John Mark’s bedside, I cried as I tried to come to terms with a new medical diagnosis he had just received. As I prayed the Lord brought a picture to my mind. It was of two men standing next to each other talking, one I knew to be Jesus and the other was John Mark.
In that instant I understood that John Mark was Jesus’ trusted friend and that he had something special to do for the Lord. This picture spoke powerfully to me. It helped me to understand that John Mark has a specific God-given purpose to fulfill while he is on this earth.
So, this is the person I am caring for on a daily basis. I am here to help John Mark do the things God created him to do.
John Mark’s life doesn’t look the same as most 26 year olds. He will never go to college, never marry and have children, and is unable to work in a full time career, yet his life is just as valuable to the Lord as anyone else’s.
How can we help those who are in the midst of rearing special needs children? What are some practical things we can do to lighten their load?
Being the parent of a special needs child can be a very isolating experience, causing us to feel alone. We need you to reach out to us and let us know that you care.
One way that we have been cared for by our friends is when they have offered to spend time with John Mark so we can go out on a date, a blessing for us since so much of our time is spent with our son.
Don‘t be afraid to ask how things are going…and when we tell you, listen to what we have to say. When you listen you are allowing us to share our burdens and cares with you, and that is a tremendous blessing to us. And you don’t even have to give us any answers. We just need someone to hear what we are going through.
If you know that a parent has a child in the hospital look for practical ways to help, like offering to baby-sit for their other children, taking care of their pets, getting their mail, checking on their house, watering their garden. One year John Mark was in the hospital for 12 weeks, and we were blessed to have friends care for our dog while we were away.
Most importantly, pray for them. As a family, we have gone through some very difficult times while caring for John Mark. Just knowing that there were people praying for us really did make a difference to us.
How does your walk with Christ mesh with your quest to be an effective parent?
I am able to be an effective parent because of my relationship with Jesus. He sets the direction and gives purpose to my parenting. I could never do it without Him.
If I am not close to Him I am ineffective, because I just wind up trying to meet my family’s needs in my own strength and that never turns out well. So, I really have to take time for the Lord and make sure that I am hearing what He has to say to me in His Word.
Any encouragement you’d like to offer women out there who too are in the thick of raising a special needs child?
When things get tough, please don’t give up…on your child, your marriage, your life, your faith and most of all, don’t give up on God.
All that you are doing is totally worth it because you are caring for someone very special to Him. He knows how rough it can get sometimes, and He promises in His Word to never leave you alone to do it all by yourself.
This Bible passage has been a great encouragement to me during especially difficult times… I pray that it will be the same for you.
‘The God who made you in the first place, Jacob,
the One who got you started, Israel:
Don’t be afraid, I’ve redeemed you.
I’ve called your name. You’re mine.
When you’re in over your head, I’ll be there with you.
When you’re in rough waters, you will not go down.
When you’re between a rock and a hard place,
it won’t be a dead end
Because I am your God, your personal God,
The Holy One of Israel, your Savior.’
Isaiah 43:1-3 (The Message)
The very God who made you and your child knows you both personally, understands what you are facing and will be there to help you get through it…all very good reasons to keep going!
Connie’s Giveaway
‘A Different Dream for My Child’, by Jolene Philo, is a very special devotional book written for parents of critically ill and chronically ill children. Her experiences with her own son’s early medical problems created in her a deep desire to reach out to others who face similar circumstances. She has created a website, Different Dream, that is a great resource for families.
Connie is giving away a copy of this book and including a $10 Starbucks card.
So, here is the question: Do you have a child or adult with special needs in your life, whether your own child, a relative or friend? How has knowing this person affected your life?
If you don’t have time to answer the question but would still like to be included in the drawing just say ‘I’m in!’. Winner announced Monday.
Please leave your comment here but be sure to visit Connie’s blog and the Different Dream website she recommends too.
Special Blessings,
42 Responses to Exploring Special Needs with Connie Hughey & a Giveaway too! :-)
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My son is autistic and has a life threatening illness! The isolation I feel sometimes overwhelmes me so greatly I feel as if I am drowning. I know the LORD gave me a very special gift in my son but some days it is so difficult to see that and some days I just want to cry “why me!!! I can’t do this any more” but then I try to put myself in my son’s place and think it’s not any easier for him and he lives it 24/7 where at least I have the 6 hours away at work to have some normalcy. I have learned tolerance, patience and most of all dependence on the LORD for every day!!! I could write for hours on this subject but it wouldn’t be of interest to anyone so I will just say thank you for today’s blog post!!
My oldest son has special needs and it has changed my life in a good way! It has given me new perspective on life! I homeschooled him for most of his school years, and while he struggled to get through most subjects, Bible was the one he sailed through. He gets what is important. At 21, he is able to work at our local grocery for 6 hours a day, and he absolutely loves it! Everyone around him complains about how hard it is, and how much time they spend there, and he just can’t figure it out. I never imagined that my life would include a special needs kid, but Praise God it does!
My oldest son has special needs and it has changed my life in a good way! It has given me new perspective on life! I homeschooled him for most of his school years, and while he struggled to get through most subjects, Bible was the one he sailed through. He gets what is important. At 21, he is able to work at our local grocery for 6 hours a day, and he absolutely loves it! Everyone around him complains about how hard it is, and how much time they spend there, and he just can’t figure it out. I never imagined that my life would include a special needs kid, but Praise God it does!
I am the mother of three with the middle a special needs child. “I’m in!”
Every day is a different day for the whole family.
Gabe has Cornelia de Lange Syndrome and is 9 1/2 years old.
My husband and I adopted 6 children with special needs. One of them had severe emotional needs, RAD, PTSD. One has down syndrome. One has autistic tendencies, severe mental retardation.
What they have taught me truly, is that I can do ALL things through Christ. Expericing the mile stones that they achieve is A Great Day! I’ve homeschooled the children most of their education. I’m still learning patience. I have learnt through the children to take one day at a time. We need to be scheduled but prepare to change directions instantly.
My children are reaching adult hood and this offers new challenges that I was not prepared for. Two of my children will not be leaving home to venture on their own. It is a new world as we dive into Conservatorship.
Chris has been in our family for six years…He has several dx and a totally disarming smile. God has used him in ways that we are still trying to process as a family. His situation pushes us at Jesus…we have learned how very selfish we are and how shallow our lives have been. I cant say i’m always ok with life, that we don’t have breakdowns and burnout, but one thing i know and cling to: God is always good. He has a plan and we just need to trust Him for the ride.
My daughter, Isabella (means “Pledged to God”) was born with Severe Meconium Aspiration Syndrome and diagnosed with multiple strokes inutero. Initially we were told if she survived the first 48 hours, it would be a miracle. Fourty-eight hours later we were told is she ever walked or talked, it would be a miracle. Wednesday night (May 18th), she graduated from Preschool walking, talking, and singing “Awesome God”, and “Jesus is My Best Friend” with the rest of her same age peers. Our family knows first hand the power of prayer, and each day this little miracle inspires me to strive to do and be my best. Some days are harder than others to help her with her impulse control issues, etc., but I accept them with open arms and many prayers as we know God has BIG plans for His little child, the one He has entrusted to our family.
I have several friends who are parents of children who have special needs. Having a passion for the special needs already implanted within me, I benefit greatly from these relationships. I am one of the very few who are greatly fulfilled when helping someone with special needs. I had several friends in mind when reading of this book! I’d love to be able to bless one of them with it!
I am raising my 17 year old daughter that has Down Syndrome. While she is not severely handicapped, she is never left totally alone. It was hard in the beginning, as i did not have much help or understanding from her birth father. My husband now is awesome and has brought out a side of Taylor’s personality that is hilarious! We also are raising our my husband’s 13 year old daughter that has Bipolar and significant learning disability. on most days we find it harder to deal with the learning disability than the Down Syndrome. My daughter with Down Syndrome is a huge blessing (as is the 13 year old). She has a connection with God that I can only dream of having. When she is “being touched” by God she cries and cries. People will love on her and hugs her thinking it will calm her and help…what they do not realize is that God leads her directly to the person needing prayer. This is His way to use her. Before Taylor is done crying, the other person is on their knees with Taylor laying hands and praying for them. It is an amazing sight. Because of her, the Lord seems to use me as a magnet. I draw “special kids” and their parents like flies to honey. I babysit from home to help with the expenses…I deal with Autism in one, XLHED in another, and multiple physical disabilities in yet another. I am so blessed to have these kids in my lives. I wouldn’t trade any of them for all the money in the world. Each one has entangled their heart in mine and will be part of my life forever. Thank you for posting this blog!
I sub at a school for the developmentally disabled.
I must say that I am blessed by them and know in my heart that they will be whole in Heaven!!!!!!!!!!!!
Thanks for the opportunity to win this book!
I am most grateful!
Charlotte Kay
I am the parent of a son with Sensory Processing Disorder. While not an overwhelming physical problem (though there are developmental delays in our case) it is more of a psychological problem. It can look a lot like Autism, but it is not Autism. Right now we are fighting (as an SPD community) to get this included in a medical diagnostic book (the DSM V) so that schools and insurance companies will recognize it and give our kids the help they need.
My son Rob was born April 24, 1977 with the ambilical cord around his neck, which caused him to be asphixiated or his oxygen to be cut off. This caused severe brain damage which was not diagnosed until he was around nine months old. He was not developing normally and I took him to a pediatricion who also did allergy testing, because I had read an article about babies being allergic to their milk can cause slow development and since he had been very difficult to feed I thought that could have been the problem. She took one look at him and asked if my docter had discussed his cerbral palsy with me. She proceeded to tell me how his life would be different from my two girls and all that he would be unable to do. What she did not tell me was how very special he would be? I have experienced a life full of ups and downs. The experience has brought me closer to my Lord and helped me understand the suffering he went through for me. I too have felt isolated and at times overwhelmed. I have also experienced much joy in the small things Rob has been able to do. He comes alive when he gets in water to swim, or when he is paid attention to by other people, he is very out-going and loves people, he loves birthdays, even when it is someone elses, he loves it when he is able to do something himself and he has a delightful sense of humor. My life has been truly blessed because I have my son. My biggest concern is who will care for him after I am gone but I know the Lord has a plan. Jeremiah 29:11
I have a niece that has downs. She is such a sweetie. She has a smile and a hug for everyone. Just a joy to all that know her.
ABreading4fun [at] gmail [dot] com
I messed up & left a comment on your email. So I hope this comment gets in the drawing. As I am a mother of a 37 yr. old son with special needs. God has brought us through so much as a single mother. I was so encouraged by Connies interview; addressing issues that are so real to mothers like us. I also was greatful to find her blog which is fabulous. I can hardly wait to really digest it all! I am another witness that it can be done with God’s help!
Yes, I have a special needs person in my life.
While I am not a parent of a special needs child, I am blessed with a friend that has adopted two children with Downs Syndrome. They are a joy! What smiles they radiate to others around them. I also am a preschool teacher that has had the blessing of serving a child with Asperger’s Syndrome (I think I misspelled it, sorry). He too is such a joy! What love for others and love for Jesus that comes from these little people. I have learned that one should take time to smell the roses, enjoy the rain, love the giggles you hear…our time on Earth is short in comparison to the time we will spend with Our Heavenly Father…I don’t want to waste a single minute. God Bless…Robin
What an encouraging article! And the comments are just as encouraging to me. My daughter was born 15 weeks premature weighing in at 1 pound 12 ounces. She experienced so many complications! Her dr.’s told us not to expect her to walk, talk, or develop past infancy. We knew it was a miracle she was still alive so we decided to let God have the final say in her development. She turned 6 last week, goes to kindergarten, and is learning to walk. He life is such a blessing! We find that God uses her story in amazing ways to touch people. I appreciate the above comments from other moms. I find myself lonely at times for others who understand the energy and effort it takes to raise children with special needs. On the other hand, I am often reminded in the midst of challenge, not to take these beautiful years for granted and to treasure and savor each day and each accomplishment!
Oh, what a blessing all these mother’s are! My daughter has some learning issues, more developmental than anything, but even that can be hard–for her and for me. We only found this out at the beginning of this school year. But, she is in a special tutoring program now and progressing so well! PTL!
I have also worked in this field and I will tell you… it blessed me beyond believe!
My brother is 44 years old. He was born blind (one eye was not fully developed), club feet, cleft palate. He has endured many operations and didn’t walk until he was 4. He is developmentally disabled as well. The Dr.s diagnose him as having his own syndrome. My Mom has fought many obstacles to get him where he is today. When they wouldn’t bring him to her in the hospital and said he needs to go somewhere for fulltime care. She said no. He graduated from the Blind School, works at a workshop (those that work there are angels) and lives with guy who is blind and he has known since preschool. They have a wonderful care team and they are in a house and living life. He is a happy guy and knows Jesus as his Savior. They love for us to visit(I have 2 teens) and play wii games with them. My kids appreciate and love them alot. Yes blind people can play wii and other games. Their favorite thing to do. We are blessed to know them.
I’m in.
Wow! You moms of children with special needs are so amazing! The patience and love you have for your children is inspiring, and I am in tears reading your comments!
I work with children with developmental delays, in an early intervention program. I have had the privilege of helping many of them (in concert with their parents, family, and other therapists) to learn to walk, talk, and achieve in other areas of development. It has truly changed me for the better. Like others of you have mentioned, I have realized how selfish I can be, but being with these little ones has forced me to look outside myself, and to draw closer to our Creator. It breaks my heart at times to see these little ones lacking, but at other times I can see how wonderfully they have touched peoples’ lives, and I know that God’s mighty hand is on them, and then my heart practically bursts for wonder & joy!
May God continue to richly bless your children & those whose lives they touch, today & well into the future!!
PS – “I’m in!”
I’m in. Thanks for the opportunity to win this. I will share this with a family at my church. God Bless.
I am the momma of an 11 year old with De George Syndrome. We spend alot of time in and out of hospitals and appointments. At birth we were told he would never make it in a regular ed class. I am proud to say he is in a reg ed class and holding his own. To date he has had 14 surgeries. I also have a 18 year old that is not only high functioning Autisic but also bi-polar. He is in high scholl in regular classes and maintains to the point that no one is aware of his daily struggles. He has also recently experienced a drug addiction problem that had us in rehab 4 nights a week for several weeks. I thank God for the family and friends I have that support us daily. We thank God for incredible work situations that believe family comes first and allows us to take care of what needs to be done. I thank God for the opportunity to help other families as they face thier struggles. Most of all I thank God for entrusting me with these 2 very special boys.
Ladies–
I am so grateful for the encouragement you’ve found through Connie’s guest post!. I loved stopping to read all your comments this afternoon.
You ladies inspire me. You are the real deal!
Thanks so much for this! YES! My four year old son has Cerebral Palsy…I’ve often said that CP is our platform not our pit. It is harder on mommy as he is getting older. I start to wonder what other kids will say…will they be nice? will they make fun of him? will he be included? what kind of school to send him to? and on and on and on…
But God has set us on this path and we will travel it, in His grace, as long as He gives us this child to love!
Platform, not pit. Allison, I needed to hear that today. Thank you!
Thank you so much for introducing us to those you love and care for. I have been very encouraged by your stories, as well. Your service of love to these precious children does not go unnoticed. You are doing it for the Lord, and He sees that…and you bring Him great pleasure!
I think we all understand the feelings that were expressed about feeling lonely and that no one understands what we go through. Please feel free to contact me if you would like to talk further. I can be reached by email at lockshock007@gmail.com or leave a message on my blog, In the Waiting Room at http://www.inthewaitingroom.net. I would love to hear from you, dear sisters!
My neighbor’s daughter has seisure disorder and undiagnosed autism. I see the challenges that Lauren faces every day. If I will, I will give her the prize! She deserves it!
Our son, Jonathan, is a true gift from God. He was born with spina bifida and hydrocephalus that was complicated by meningitis contracted during his birth. The doctors, after 7 weeks in the hospital, said that he would maybe live a year. We took him home, sought a second opinion, prayed a lot and Jonathan is now 14 years old!! Praise the lord. It has been 14 years filled with surgeries and hospitalizations but it has also been 14 years of absolute joy! Jonathan’s condition has allowed us to slow down in life and enjoy what is right in front of us without hurrying on past too fast. And we have met the most incredible people because of what our family has been through. I truly can say that we are thankful that God chose us to walk this road because we would not be the same if we hadn’t.
Dear Karen,
This comment isn’t an entry in the contest to win the book. (As its author, I have plenty of copies here at home.) Rather, I want to thank you for featuring “A Different Dream for My Child” in your give away and for mentioning http://www.DifferentDream.com. Any assistance in getting the word to parents about this resource is appreciated!
You and your readers might like to know that my new book, “Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs” will be released by Discovery House Publishers in October of 2011. It contains loads of resources, information, and advice for parents of kids with special needs. And it addresses the spiritual and parenting challenges unique to families of kids with special needs.
Once again, thanks for the mention. And I encourage the parents who have entered the drawing to visit http://www.DifferentDream.com. It’s a place for you to find resources, encouragement and like-minded parents facing challenges similar to yours.
Jolene
My friend Carol would be blessed by this book as her precious child has many many challenges and she is an amazing Mom and advocate for him yet she is getting tired
Thank you so much for introducing us to those you love and care for. I have been very encouraged by your stories, as well. Your service of love to these precious children does not go unnoticed. You are doing it for the Lord, and He sees that…and you bring Him great pleasure!
I think we all understand the feelings that were expressed about feeling lonely and that no one understands what we go through. Please feel free to contact me if you would like to talk further. I can be reached by email at lockshock007@gmail.com or leave a message on my blog, In the Waiting Room at http://www.inthewaitingroom.net. I would love to hear from you, dear sisters!
I have a daughter who has PWS. Days are never easy but I wouldn’t trade her for anything.
My son has Autism and just having him in our life has taught us so much about “living life a bit differently”. A lot of the best parts of my son has to do with his Autism. I thank God everyday that he gave us a child with special needs because he has taught us so much more about life than we ever thought possible.
I have a 7 year old with Tourettes. He has changed my life in that I am a better parent and am learning about how to be the best person I can be. “I’m in!”
My big boy is 17 now, his body has grown but being born with spastic quadraplegia cerebral palsy he is as dependent on me now as he was that first day he was born. His life has been one of immense struggle with seizures, chronic pneumonias, and surgery after surgery. He is the sun in my sky. Through it all, he greets each day with a smile that proves God is real, God keeps his promises, and God will never forsake us no matter what!
Thank you so much for introducing us to those you love and care for. I have been very encouraged by your stories, as well. Your service of love to these precious children does not go unnoticed. You are doing it for the Lord, and He sees that…and you bring Him great pleasure!
I think we all understand the feelings that were expressed about feeling lonely and that no one understands what we go through. Please feel free to contact me if you would like to talk further. I can be reached by email at lockshock007@gmail.com. I would love to hear from you, dear sisters!
I have a 32 year old son who is blind in his left eye, deaf in his right ear, is mentally handicapped, non-verbal, hyperactive, has autistic tendencies, has seizures, and was born with only one kidney, causes of above remain unknown. I am a Christian and wish more churches had families with special needs children/adults. Unfortunately, most don’t.
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My 11 yr old son Logan suffers from autism, he is nonverbal, & incontinent. He suffers from sleep disorder. Life has been difficult, but God is my strength. My walk with Christ has become rich having to raise a special needs child, he is the youngest of my five sons. God has blessed us so much despite the hardships which are very hard!
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