Parenting Forum: The Special Needs Child

4 Responses to “Parenting Forum: The Special Needs Child”

1. Lori on January 21st, 2009 2:17 pm

   Dear John,
   I was very touched by todays broadcast, as I too have a special needs child. Infact I have had two. My first son,Tucker, was born in ‘01 with trisomy 13, (patau syndrome)a rare chromosone disorder labled “not compatable with life”.
   The devistation was not that he would be profoundly mentally retarded, not walk or talk, and as the doctors put it, “no quality of life”, but that they said “take him home he is going to die”, “95% never see their first birthday”, and that he probably won’t make it home from the hospital. After doing research, we found that some of these children do live longer and some have lived into their teenage and early adult years. Rare yes, but from that point on we decided as long as there is breath, there is hope. We were not going to let the enemy rob us of the joy of having our son. Instead of planning his funeral, we tore up the DNR orders (we were forced to sign) and started planning his future. I couldn’t wait for him to do special olympics. Our life went on as normal, We traveled accross country, camping along the way. We took him to his older sibblings rodeos and horse shows. We hunted and did all the normal things our family did until he passed away at the age of two. He brought us so much joy, and love, and happiness that even after he passed away, we did not miss an opportunity to share his life with others. I often said, I wish every family could have a child with special needs, there would be a whole lot more love in this world!
   Four years after Tucker died,(www.cowboytucker.com) we recieved an email from the trisomy 13 support group (www.livingwithtrisomy13.org) that we still belong to about a baby born in St.Louis with trisomy 13 that was up for adoption, and if they couldn’t find a home, he would be institutionalized. My heart leaped at the opportunity but new we should pray about it. After a “quick” prayer and a phone call, God flew the doors wide open,five weeks later we were sitting in St. Louis, finalizing an adoption. (you can read that miraculas story on the trisomy 13 website, and go to Joey Lane Huddleston Reite’s page) People say Joey is so blessed to have us to care for him but I always say, We are the ones who are so blessed to have him. Or people say, “It is so good what we’re doing for him” and I correct them by saying “it is so good what God is doing through us”. Many people ask why we would choose to do this again, and the answer is simple. We have 4 normal grown children. I have discovered that “normal” is just a matter of perspective. Every one of my children have broken my heart at one time or another by choices they have made or things they have said, my heart aches for them, but never for my trisomy 13 babies will I ever have to endure that. One day when I was sitting out hunting, enjoying the quietness of the of the woods(waiting for a deer to pass through the cross hairs of my rifle),God just laid these words on my heart. and here is the poem they became:

   A Look At The Brighter Side
   “No quality of life?” or “The perfect child.”

   They say, “He’ll have no quality of life. He will never walk or run, jump or play.”
   I say, “He will never stomp his feet in rebellion or run away.”
   They say, “He will never talk or laugh or sing.”
   I say, “He will never talk back, utter words in defiance, gossip or lie. He does laugh and he makes music in my heart. I think he is the perfect child.”

   They say, “ He has no quality of life. He is visually impaired or may be blind.”
   I say, “That may be, but he won’t give haughty looks, or become addicted to pornography.”
   They say, “He will have to be fed through a tube or hand fed all his life.”
   I say, “I will never have to worry about him taking drugs or too much alcohol, or spoiling his dinner with junk food. I know that his meals will always be nutritious, giving him the best health possible. I think he is the perfect child.”

   They say, “He has no quality of life. See here? His hands are dismorfic, he has rocker bottom feet, the bridge of his nose is too wide, he has ‘cow-licks’ all over his head and a big red birth mark right in the middle of his forehead!”
   I say, “Better a ‘cow-lick’ than a ‘moose-lick’! and as for that birthmark? Why, that is Gods thumbprint, the seal of approval on a perfect creation! I think he is the perfect child.”

   They say, “He has no quality of life. He has holes in his heart.”
   I say, rather holes in his heart than in his eyebrows, lips, or bellybuttons. Besides, “Don’t we all have holes in are heart that need healing?”
   They say, “He will never be able to ride a bike, or tear open presents at Christmas time!”
   I say, “His life is simple, He is simply content. He won’t covet the neighbor’s toys. In fact, he will have no ‘wants’, and Christmas will be more meaningful.
   They say, “But you will always have to change his diapers!”
   To that I say, “Change is good! I think he is the perfect child”

   They say, “ He has no quality of life. He won’t sleep at night, he will rise long before the sun comes up ready to start his day and YOU won’t get any rest!”
   And I say, “Did not Jesus rise long before the sun came up? And He IS who gives us quality of life. When we go to be with Him, we will not need sleep, for we will be fully rested!”

   They say, “ He has no quality of life. He will never be able to drive a car. He will be in a wheelchair at a very young age.”
   I say, “He may never have the keys to the car, but he will always hold the keys to my heart. There will be no nights lying awake worrying if there’s been an accident, or if he is broke down on the side of the road. And by the way, how old were you when you got YOUR first set of wheels?”

   They say, “He will never marry or have a family of his own.”
   I say, “That is true, but there will never be premarital sex , unwanted pregnancies and he will never experience the heartache of a divorce. I think he is the perfect child”

   They say, “Take him home, he is going to die soon. He will never make it to his first birthday.”
   And I say, “I’ll take my baby home. None of us are guaranteed another birthday, but that he IS guaranteed is a place in heaven, a perfect place, free from the ridicules of the world, full of peace, love, and joy. He has the hope of salvation, The hope of life eternal, the hope that some of us know we have, others hope to have and sadly, some of us will never know. Now who is really the blessed one? I know he IS the perfect child!”

   Inspired by God
   Written by Lori Reite
   (Mother of Tucker Reite born with full trisomy 13)

   Many parents of special needs children are familier with the poem, “A trip to Holland” about a person who made all the arrangements and are excited about their trip to Italy, and somewhere in the air their plane is diverted to Holland. It depics what the parents feel when finding out their child was born with special needs. We chose to make that trip to Holland the best trip ever, In fact we enjoyed it so much that we went back! Lori

2. Judy on January 22nd, 2009 12:36 pm

   Wow! Thanks I needed this. How true all of this is. My daughter has cerebral palsy and Downs syndrome. She is 26 years old. Life is
   a challenge, but what a blessing she is.
   I wish everyone could understand this. Not saying it isn’t a hard life, almost unbearable at times, but God has put his trust in me and I will
   not let him down.

3. Becky on January 23rd, 2009 12:03 am

   One of my very dear friends has a child with special needs. It has been a real struggle, but overall she feels so blessed to have this little child in her life. I actually just bought her a book titled “That Went Well…Adventures in Caring for My Sister” written by Terrell Dougan. This book was the most honest memoir I’ve read in a long time, and I personally think that it should be used as a guide for folks who hand out well-meant advice to parents of kids with special needs. Really opened my eyes.

4. Hydrolyze on October 15th, 2009 5:19 pm

   Just wanted to say hello all. This is my first post.

   I hope to learn a lot here.

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