Category Archives: What to Expect

Parenting Special Needs: Tips for Your Future Caregiver

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The latest on Kaetlyn – by Christine

Below with her blessing, I share a letter from Kaetlyn’s mom, Christine.  The letter is beautiful and very personal.  She is living another version of my reality, It makes us “sisters.” 
“Stacie, I share this with you because I do believe we are “sisters” as only those of us that share this reality can truly understand what it is to live on the edge with our children on a daily basis. I know our trials our different, but yet in many ways the same… I am always more than happy to share our experiences with others out there who may be experiencing their own challenges so they too may know that they are not alone on this journey through the life of a special needs family. Please feel free to post with my blessing… I will keep in touch and let you know for sure the final plan once we see the orthopedic; at the very least I know we will be moving forward regardless with the hysterectomy. 

Love and Miss you Guys! 
Christine”
You may recall Kaet’s story as shared in these posts: 
Letter from Christine dated January 16, 2012

Hope this email finds your family well! 

I am writing to let you know the latest on Kaetlyn’s “womanhood” issues.

Our continuing saga of womanhood that began last May…it has been a roller coaster ride to say the least as we cannot get her cycles (or should I say lack of)under control. Even using the birth-control pills that have continuous hormone for 3 months, Kaet was and is still getting her period every 2 1/2 to 3 weeks and the days leading to it are horrendous!  – The crying and screaming are enough to make me nuts and nothing seems to help. Once she actually starts we are at least blessed with a few days of relief and happiness. 

Her gynecologist ran in to us in the parking lot of the therapy center back in November to see how things have been for Kaet. It was then that I told her all we have been going through…I wanted to give the pills and her cycles a chance as I know it can take some time to regulate, so I did not call her prior to this to let her know what we have been going through. She calmly let me know that we have other options and to come see her when we had time. I finally made the appointment after getting through her latest orthopedic surgery and recovery. It’ hasn’t even been a month since Christmas and Kaet has had to “cycles” ! Enough is enough…

We sat down today in her office and went over everything we have been though with the irregular cycles and the fact that we had to change spasticity meds because the ones she was on (and were excellent in controlling her spasticity) had contraindications with the use of birth control pills. We discussed changing to another type of pill, but yet again wouldn’t we be in the same boat was my concern; isn’t it highly likely that the effectiveness of the pill was possibly inhibited by all the other Meds she is on? This according to the Dr is a valid concern. 

Our next options were surgical: Thermal ablation (burning out the lining of the uterus) with tubal ligation (typing tubes; since we know Kaet will never be having children of her own free will) or hysterectomy (only removing the uterus). We weighed the pros and cons of each carefully and decided that the hysterectomy would be the most definitive as it is possible for the lining of the uterus to grow back after thermal ablation. Please know that I have been researching and contemplating both of these already and I have to say this is a SUPER TOUGH decision to make to have your child go through yet another surgery, but is it fair for her to have to go through the pain and discomfort of a period every 2-3 weeks either?

At this point in time my mind is made up that we will proceed with the hysterectomy and for now, we are taking her off the birth control since it is ineffective anyway, and this way we can get her back on her “good” spasticity meds. I did mention to the Dr that Kaet will most likely be facing another orthopedic surgery later this year to secure the other clavicle, so she suggested and her pediatrician (we saw her today for a physical) did too that we see about coordinating the surgeries so she only has to go through it one time and be all done…that is where I leave off, we will be seeing the ortho at the beginning of Feb for her follow up from the last surgery so I will see at that time if he is willing to do it the same time as the hysterectomy. 

I sure hope and pray this all comes together and works out in the end; I hate having to make these decisions in caring for Kaets needs,  but I don’t know what else to do to to get my girl comfortable…It breaks my heart either way; seeing her miserable going through the pains of cycles or going through surgery to prevent them. I feel in my heart this is the best choice and that maybe Kaet can finally stop hurting in the long run. I will keep you posted as to our progresses…

Until then, I hope you and the family stay well …and I am praying for another LONG stretch for Riley with his seizures! 🙂

Christine
Dear reader, I hope you understand the challenge faced by Kaetlyn’s family in an effort to do the very best they can for Kaetlyn’s welfare.  As special needs parents we face dilemma’s that we could never have imagined as we prepared to welcome our precious child into the world.  Each child and situation is unique and we do not advocate one decision over another, but must each come to our own conclusions.  We share this so that others on our journey will not be alone and so that those just on the outside may understand a little of our experience.

We are all special… Stacie Wiesenbaugh

Stumbo Family Story

Different Dream Parenting: A Giveaway

Do you follow the Different Dream for My Child blog by Jolene Philo?  It is a wonderful special needs resource.  Now comes the book.  And I have one to share in a Giveaway!

 

Ms. Philo is kindly allowing Rileys-Smile to give away a copy of this invaluable resource.  I am so excited and ask that each parent/caregiver/family member of a child with disabilities to please enter my giveaway.

Excerpt
I Didn’t Sign Up for This,God!
Have you ever had one of those dreams where you can’t move? The car is racing toward the edge of a cliff and you can’t lift your foot to press the brake pedal. An attacker is breaking down the door to your house and you can’t raise your arm to dial 911. Your child is about to run in front of a truck and you can’t open your mouth to scream.
My bad dream became a reality in 1982. My husband and I stood beside our son’s isolette in the neonatal intensive care unit. An IV needle pierced Allen’s tiny arm, and angry red scars crisscrossed his chest. One end of his feeding tube hung on a pole beside his IV bag. The other end rose from the soft skin of his tummy. Pain etched his wide forehead and tugged at the corners of his perfect rosebud mouth.
More than anything, I wanted to reach out and take his hurt away. But I was trapped in a bad dream. Immobilized. Inadequate. Helpless. Though God had assigned me to love and care for this beautiful child, I could do nothing to minimize his pain. My thoughts were an inward scream. This isn’t what I signed up to do,God! I don’t want to be a helpless onlooker. I want to parent my child. How can I care for him? What can I do?
As the parent of a child with special needs, you’ve probably experienced the same sense of helplessness. Whether your child is critically or chronically ill,mentally or physically impaired, develop- mentally or behaviorally challenged,you want to do something. You want to ease your child’s pain, but you don’t know how. You want to help your child realize his or her full potential, but you don’t know where to begin. You want to ask God about your child’s suffering, but you don’t want to be condemned for questioning His wisdom. You want to believe God is with you, but you don’t know how to find Him.
You’re stuck in a bad dream. You can’t move. You can’t speak. You want someone to shake you awake and tell you everything will be okay. Instead, you wake up and must become the parent you never expected to be. You doubt that you’re up tothe task. You’re worried about your child’s future. And you’re wondering, Does anyone understand what I’m experiencing?
The answer is yes, many parents understand your situation. In the United States,
•        10–15 percent of newborns, or 431,000annually, spend time in neonatal intensive care according to the March of Dimes.
•        12 percent of children between ages 1and 17 had medical conditions serious enough to require hospitalization between2004 and 2006, the most recent years for which statistics are available at the Centers for Disease Control and Prevention.
•        13.6 percent of students between ages 6and 21 were enrolled in some kind of special needs program according to the National Center for Educational Statistics. That’s 706,000 of our country’s school-aged children.
Lots of kids mean lots of parents, dads and moms who are valuable sources ofinformation and advice. In this book, dozens of them share with you the wisdom they gained while parenting kids with special needs.
Support can also come from the surprising number of professionals who work with families of kids with special needs. These professionals—and the resources they’ve created—are available at hospitals, medical facilities, government agencies, private organizations, businesses, schools, churches, and more.
Thisbook brings you advice from professionals around the country and provides information about national organizations and resources. It also gives tipsabout where to start searching for state and local resources. More often than not, your problem won’t be a lack of resources, but a lack of awareness of themor inability to access them.
Different Dream Parenting contains six sections: Diagnosis, Hospital Life,Juggling Two Worlds, Long-Term Care Conditions, Losing a Child, and Raising a Survivor. Each section is divided into four chapters. Three chapters address practical issues. The last chapter in each section addresses spiritual concerns.
Parents of kids with special needs often wrestle with prickly spiritual questions. I sure did. Sometimes I still do. So do all the parents interviewed in this book, and most of the professionals, too. Every day, we continue to ask questions about our kids’ lives and futures. Gradually, we learn more about how to trust God’s timing and wait for His answers.
Asyou read this book, please ask your faith questions. Read about how parents and professionals learned to ask questions, wait, and listen. Consider the answers they have discerned and their suggestions about how to find comfort and courage in God’s Word. When you are ready, try out their ideas about how to pray and use Scripture to hear God’s answers to your hard questions. The thirty-day prayer guides in appendix A are designed to help you engage in conversation with Him.
Buteven with prayer guides and Scripture to guide you, I know how hard it can be to trust the God who is allowing your child to suffer. So I won’t condemn youfor asking prickly questions. Instead, I’ll encourage you, cry with you, and support you when your faith grows weak. When you can’t hang on a minute longer,I’ll hold you close until your strength and your faith return.
Ihope this book helps you break out of your bad dream, wake up, and move forwardwith joy and confidence. I pray that the stories of parents and professionalsin this book will give you hope and strength.
Most of all, I hope youdiscover the truth God has revealed to me and many other parents. Raising achild with special needs isn’t a bad dream. It’s just a different dream. Andsurprisingly, a different dream can be the best dream of all.
Taken from Different Dream Parenting, © 2011by Jolene Philo. Used by permission of Discovery House Publishers, Box3566, Grand Rapids,  MI 49501.  All rights reserved

Entry: Different Dream Parenting Book Giveaway

Please enter the comments below  and share your name and your preferred contact information.  You may also use the email button instead to the right of the page under “Stacie’s & John’s Links.”  Should you be willing, I would love to hear a little about the child in your life along with your entry.  Multiple entries are welcome with additional comments.  Giveaway entries will be accepted through November 30th.  The winner will be determined by a drawing…. perhaps Riley will rummage around a hat for us to make the choice, I’ll ask him.


The book is available at 10% off the retail price:

Take Away

The headlines of recent are too much to ignore, so a post must be written:

Md. mom who killed son agonized over school costs

First, I strongly disagree with the decision made by the mother.  Her son could tell her how he felt; how he loved her; if he was in pain; if he was happy.  I know his pain by his cries.  I know his happiness by his smiles and noises.  She had more of a DIRECT relationship with her child than I will ever have, yet she felt it was not enough.  They referenced debt as a reason she took his life.  I would give everything I own for a moment where Riley could speak to me, or even smile (Riley’s Smile) and know it was out of true joy and not a chemical response to all his drugs or even a fart that was funny (but that would be funny).  So in sum, I disagree with the choice she made.
Still, I know my husband and I have been there.  There are moments in time, too many moments where the decision she made would be the easy one.  My husband has prayed for the end of my son’s pain, as have I, more than we care to or even can share. I think in reading the article there are things that we can all take away from it, whether you have a disabled child or not…
1.)The first “what to take away from this”… Don’t judge others.  If they are carrying “one pound of weight” or “1000 pounds of weight” everyone
is different and over time, it all feels like 100,000,000 pounds.
2.) I saw she was a single mom.  While the article didn’t go into her relationship with her parents, the $10,000 check in the mail was extraordinary.  I am blessed to have a mother who, while due to age cannot hold my child, loves him and supports him in MANY ways.   For many, even if support is there, it is not always enough…The second “what to take away from this”…A small act can go a long way…If you know of a parent of a special needs child, whether married or single, you can ask how they (the child or parent are doing)… This is support.  But, remember, don’t judge… by society (and family) there is too much judgment in special needs kids and families.  Just ask how are you?  and listen.  Being shunned by part of society, is isolating.  Just listening is often amoment of respite/help.
3.) I had mentioned earlier about how her son could communicate and mine cannot.  I probably portrayed this as selfish.  It wasn’t as much that as, honestly, jealously.  Regardless, my “thing to take away”… Appreciate what you have with the one you love, no matter what the occasion…. My husband had a “lost” father (drugs, jail, confused, alcohol, barely saw him as a child).  His dad  too took his life.  Still, after all these years my husband will share many moments he had with his dad.  They were VERY brief moments, during hard times for them both.  Still, good moments.  My third “what to take away from this” is hold on to the moments you have with those you love.
To summarize, she could no longer carry the weight of what she was facing.  She had support but was alone too much, perhaps?  Perhaps no one
truly listened.  I/we will never know.  She felt she could not give her son enough…. what parent special needs or otherwise has not felt that way.
I am looking for an end to this post but cannot find one.  I guess my end to this post is that it is not my last.  The Barnhard family found their end.  My “end” will come when either “special needs” ceases to exist or when I can no longer champion the voices of those with special needs or those who care/love them.
We are all special… by Stacie Wiesenbaugh

http://www.thingsicantsay.com
Blogging Hints Catch a Wave Wednesday

One Little Mister Parenting Blog

My Fragile Child – Guest post by Christine

Here we go again…
Experiencing yet another night and morning of crying and screaming and thrashing about, I finally decided to take my girl to the ER.  Something was definitely distressing her greatly; nothing was helping: Advil, hydrocodone, diazapam, etc.  I tried everything we had/I could think of to calm her and make her comfortable.
My less than enthusiastic husband “volunteered” to join me-as usual starting out with the same old same old “every time we plan to goon vacation something happens to her” (we are supposed to be leaving on a family road trip next week) – really dear? I am stressed enough and do not need you to add to it with your comments.  Please calm down to help us through this chapter of Kaet’s life.
Pack her backpack, make sure we have the feeding tube extensions (NCH doesn’ t have them- found that out the hard way last trip to the ER), DVD player -an absolute must have, extra clothes, diapers, towels, juice,etc. (all the necessities of leaving the house with our special girl). Change the clothes she is wearing – absolutely soaked with sweat from thrashing about all morning, load the wheelchair in the car, Kaet in her car seat and off we go.
The ride there was actually uneventful; almost had my doubts that we needed the ER visit, but knew I would regret it if I didn’t make sure she was okay.  We arrived at the ER and thankfully there were only a couple people ahead of us (adults that wouldn’t be going to the peds section) this should be quick, right? Of course not, we waited and Todd wheeled her back and forth through the waiting area while she cried and screamed in her chair. Taking too long he decided to try to carry her around (5ft tall and 80 lbs) until they could get around to her.  I could see his frustrations building.
Finally, after what seemed like an eternity, we were called upon.
Staff: “Will she be cooperative for stats?”
 Me: ” No, not really!”
Staff: “Do you know how much she weighs?”
Me:  “Approximately 80pounds.“
Staff: “That won’t work , the Doctor will need an exact weight.  Will she stand for a minute onthe scale?”
Me: “No.”
Staff: “Can she sit on the other type of scale?”
Me: “No”
Even so, back to the room to get stats we go – all the while my husband carrying our “little” girl! UGH!
After the adventure of getting her weighed and attempting to get an O2 reading on a screaming child; we finally were taken back to the exam room to see the Doctor, so we thought. We arranged Kaet on the stretcher as best we could, set up her DVD player and tried to keep her calm.  It was then that I noticed it; what was that strange “ball like” look to her collar bone? – Yep, before the Dr. even walked in, it was obvious, we were dealing with a broken collar bone.
Smiley Face
The Doctor walks in after at least 15 minutes (mind you I said there was no one in Peds at the time). After explaining the events lead ingto our decision to come to the ER, I pointed out to her what we had seen.  She touched it and said yes, looks like a broken collar bone.  We’ll have to get anx-ray.  By this point Kaet was out of control; I was almost lying on top of her to try to keep her from thrashing about and Todd trying to keep her arm from moving around.  I had to ask the Doctor for something to help relax her; from the options given, my best guess at what would help was Ativan.  Again, we wait as they take their time getting the meds, then wait for it to take effect, NOT!  My girl is a fighter, kept on going screaming,crying and thrashing about.
X-ray came in with a portable machine to make it “easier” –we did our best to keep her as still as we could ; did pretty well… only took two tries to get the x-ray.
Smiley Face
Nurse came back to tell us the Doctor was waiting to see the results and asked if there was something he could do for us. OMG, PLEASE get something to help relax her; obviously the Ativan was doing nothing.  Again we waited and waited and waited…Finally,I asked my husband to take control of Kaet, I was going to see what the heck was going on…
As I approached the nurses’ station, I saw, the Doctor, the nurse and two interns/assistants (not really sure) chatting.  Immediately the nurse responded with “we are waiting for the morphine to come up and the Doctor is just looking at the x-ray.” The Doctor then stood and came over to explain the nature of the fracture and that she had a call in to Kaet’s orthopedic surgeon to see how he wanted to handle it.
I went back to the room to help my husband again while we waited for the morphine.  I explained to him that Kaet’s Ortho was not on call this weekend, but his associate and theER Doctor was waiting to hear back.  As soon as I knew it was the Doctor’s associate, I knew we were just going to be sent home and told to go see the Doctor tomorrow. – BINGO! – ½ hr later the Doctor came in to tell me what I already knew! During the wait, the nurse did bring the morphine, so Kaet was finally trying to calm down, but having difficulty getting her breathe as she worked herself up too far.  Her lips kept turning blue as she tried to suck air into her nose (she couldn’t get her breathing pattern straight) and kept getting scared and then hold her breath.
Above: Kaet peers over at her mom during horseback riding, Oct. 2010.
Finally the morphine kicked in and they were able to bandageher arm around her torso to help keep her from moving it.  Kaet was OUT!
Smiley Face
  And we were on our way home with Rx for morphine in hand to help get us through the night.
As I sit here writing this, I listen to my girl moaning in discomfort, but finally “relaxed.”  Tomorrow we will head to the Orthopedic and see what the prognosis will be.  I do know however, at Kaet’s last checkup we had already discussed the possibility of this event inevitably occurring (Kaet had bone deformities) and that we would be doing surgery to plate the bone to prevent this from happening again.
My wish to share is for our special needs kids to be treated just that and not be cared for following “normal” protocol when being taken to the ER – if we are there, there is ABSOLUTELY something wrong and they should be urgently; especially when they are the ONLY patient in that area at the time. Do not just “avoid” us by putting us in the room in the corner and shut the door. We are there because we need help!!!  – Our kids cannot understand what is happening and cannot be “reasoned” with to remain calm.
It took all had to keep myself strong for my girl; the last thing she needed was mommy breaking down on her too.

“Patient Rights: As a Patient, you have the right to:

  • Receive considerate and respectful care.
  • Expect reasonable access to and continuity of care….”
By Christine

Reliving Zachary’s moment: By Rebekah Aldridge, Guest Post

In 9 years of being a mother of a special needs son, Ithink I have heard most everything you can imagine.  From insults to injury and blessings to prayers.  So it kind of comes without saying that you develop a thicker skin than most.  Otherwise you would certainly be offended far too often than you would like.  
Zachary enjoys yachting with his mom with Freedom Waters Foundation, above.

Anyway, every parent deals with their “wound”in a different way.  I have chosen to see my situation as an opportunity to be my best (even though most days I do not feel like that).  It has been 9 years since Zachary suffered severe abuse at the hands of his biological father which has left him with permanent brain damage and left paralysis. Even though my son is the victim of this abuse and I try not to be selfish about his situation, it has taken several years to try not to think about it.  Until Tuesday, I thought that this wound has long healed.  But I found out that not only is it still an open wound for me, but it is an ugly infected one that reared its ugly head this week.  This is not to express my opinion of Casey Anthony atall, I am not here to solicit your opinions either.  It is merely watching the outcome of her trial that has exposed my ugly, sore wound.  
See, I am from Orlando and my son was abused in Orlando. We spent 52 days in PICU and most of those days he was in a coma. It took nearly 3 years to put his father in jail for his crime (which to this day has never been admitted by him).  I faced many, many judgments from my family and friends by offering a plea deal as opposed to going througha trial.  It’s a very long and boring story that leads up to that point,but the short and sweet of it is that I offered (through the State Attorney’soffice) a 5 years sentence in exchange for a guilty plea.  MANY people disagreed with my decision and thought that I was letting him off the hook fartoo easy for this life sentence that he served to my son.  I have since settled myself with my decision and moved on.  
I did not know that it was still a very sore subject until Tuesday.  Because there was also such alack of physical evidence in my sons case, his father could have walked out of that court room, just as Casey Anthony soon will.  Again, I am not here to hear about her or others opinions about her but merely to share my wound process with you.  My reaction to the verdict was outrageous.  You would have thought that I was a member of little Caylee’s family.  I had to go clear my head, and after much deliberation with God, I realized why it affected me so much.  This was my own little precious wound that no one has ever been able to see.  Like a little secret I have been hiding from the world under this strong woman facade.  It is never my goal for people to feel sorry for me in any way, my son is truly a blessing and he is a miracle child.  He survived what most children do not and has overcome so much in9 years.  To get back on track, I thought these feelings were long behindme.  The reality of it is that they are not.  Since Tuesday, most of my family has called to say what a great decision I made 6 years ago. 
 “Good thing you chose to take the deal,” “I was against you offering the deal, but I have changed my mind after today”… and other such things.  Which I am grateful for! I have an amazing family, that has supported me and Zach through the most difficult of circumstances.  
My point to all of this is that even though I have developed this thick skin to most everything, there are still things that can send me to my knees in tears.  After all we have been through and the things I have seen and heard, you would think that nothing could faze me. So now I am working on picking myself back up and learning to deal with this new feeling that has sent me reeling.  My mother said it best today when we were at lunch, she said “You have a huge scar.  Even though your wound has healed there will always be a scar.  Nothing will ever change that.”  She is right, no matter what I do that scar is still there and I was completely blind-sided by what was festering underneath it until it was opened and exposed on Tuesday.  AllI can ask for is prayer, that maybe with more time my scar will fade.  I can tell you that 9 years later I still feel the sting of the day that changed our whole life.  I would never trade one day of the life I share with my son, he is just awesome.  But I would ask that if you read this and you see someone with a child that has difficulties or “looks funny,” try not to stare or say something ridiculous, because that person has probably suffered a great deal and a harsh word will not make them feel any better.  
I have developed a skill that I am not proud of since my sons accident and that skill is making people feel stupid while being super nice about it.  Today at Calistoga, a man (I assume that he must have been starving) cut in front of me and let the door slam in my face.  I had my 5 year old in one hand and my son in the other(by the way it is obvious that my son has disabilities, they are physical). Then he turned to watch the door shut in my face.  I could have run in there and yelled at him, and called him was he truly was but instead I simply smiled at him and said “Here let me hold the door for you, I am sure you must be starving” and I walked away.  I did not give him a chance to talk back to me, because in my opinion his comment, even if it was an apology, would not have mattered. 
People are rude and there is nothing you or I can do about it, but maybe by sharing my experiences and Stacie’s experiences people who read this blog could be less rude.  Yes these things really do happen, it sounds appalling but it’s true. Remember this, just because the child may not hear what you say under your breath, doesn’t mean I can’t.  Thanks for letting me sound off!

by Rebekah Aldridge  “Make the best decision you can with the information you have at the time.”

Holes In His Socks – Guest Post by Sabrina

Happy Independence Day Everyone!
Today I share a story about a special needs brother by Sabrina, a German blogger of the wonderfully creative site, CoffeeRocketFairyTale.  Below I share Sabrina’s “Monday Morning Message” posted this morning.

Yesterday I got acall from my brother. 

It was about 10.30 am – a time he usually doesn’t call because that’s when he is at work. 
When I answered the phone he told me he had just discovered two holes in his socks and now didn’t know what to do about it. 
He is 28years old. 
My brother was born with disabilities, something the doctors called “trisomy 8“- meaning he was born with three copies of the eighth chromosome (instead of two). 
If you see him you wouldn’t be able to tell. 
If you speak to him you wouldn’t be able to tell. 
But maybe you would notice if you spent more time with him. 
Until October 2010 he lived with my parents. 
We all knew that it was time for him to move out because we realized that he wouldn’t make any more progress as long as he stayed at home. 
He relied on mum and dad doing things for him he could have been doing without any help, but you know how things are in “Hotel Mama” as we call it: you get your mum/dad/brother/sister to do it for you. 
But one day he mentioned that he would like to live in his own place one day. 
It took my mother more than a year and countless visits to the authorities before they had found a convenient flat and developed a way that allows my brother to live in his own place but still receive the special care he needs. 
Compared to other people with disabilities I know, there’s not much he needs. 
His time management is pretty much non-existent, so he needs someone who tells him to hurry up. 
He can’t judge if it’s warm outside and he could wear just a shirt to work or if he needs to put on a jacket. 
Also, he needs help with the “official” stuff. Letters from authorities,paying bills… 
And apparently he doesn’t know what to do when he finds that there are holes in his socks, either. 
Good job though that he thought about asking someone – I told him to get himself some new socks and not to worry. 
Despite the little problems he sometimes encounters, he thoroughly enjoys living in his own flat which he shares with another man of his age who has similar special needs. 
Both of them knew they wanted to live in such an environment. 
When weall sat together and thought about the possibilities they have, both of them made it very clear that they did not want to live inthe sheltered workshop there is for people with disabilities. 
It wouldhave been too much care for them. 
Theother options was to live in a flat (just as they are now) but with very littlecare – only once a week a caretaker would pay a visit to check on them. 
Again -it wouldn’t have worked out because that would have been too little care. 
That’s the problem we have here in Germany at the moment: you either have too much or too little care! 
So my mother and the other guy’s mother got together and thought about the situation- and came up with a system that suits their purpose: my brother and his friend moved into their own flat, but a caretaker would come in twice a day to get them ready for work in the mornings and make sure they get something to eat in the evenings, get their grocery shopping done and get some help with their paperwork. 
Most of the time, this works pretty well. 
But it’s still very important for my brother to know that he can call my parents or me if he has a problem. 
Like when he discovers holes in his socks. 
Sabrina

My Life’s Reality – Guest Post by Christine

I do not know what’s come over me! Literally it hit me yesterday smack in the face as I was discussing getting Johnathan enrolled in school.

My life became a life of sacrificing my own needs/wants for those of others.
I dreamed of teaching (helping kids); being able to give to those who would someday appreciate it. What have I settled for in a job? –  A bunch of “me, me, me” ungrateful women. There is no “reward” in the job I have; I have so much more to offer this world and will never be able to show it.
I dreamed one day I would watch my children grow and share with them all that I was unable to have growing up and the milestones of life. I have the means, but God has chosen for my girl to struggle through this life while I sit and watch my unappreciative sister’s lack of desire to nurture her child and open the world of opportunity to her.  It kills me to think of all Kaet could have achieved in her life if only she was born “whole”. Why was she cheated?
I would love some mother-daughter time, going shopping, to the salon or even a movie together; all impossible as Kaet gets tired and/or overstimulated easily.
Almost 15 and should be getting excited to learn to drive and for the independence of getting a driver’s license. Kaet will always be dependent on others to get her where she needs to go, yet never be able to tell anyone 🙁
Why was she cheated all life has to offer? – Yes, I know “it is God’s plan and we are not to question, just accept”.  I try to always keep this in mind and pray to him for understanding.
In the end she is my rock. When I am down I run to her and hold her in my arms and thank God I have her in my life. If she gives me this peace, then why do I hurt so?
Being the mom of a special child sure does have its own reward, but it also wears you down when you feel so trapped and secluded from the rest of the world because of the limitations placed on them.
Yes, I know that some say our special needs children are only trapped by their limitations if we let them be; easier said than done. All the work that it takes just to get to and from the necessary doctor/therapy appointments with these children is exhausting; then add in the full time job on top of it; I just don’t have that much left in me.
We are not alone in this journey… It is okay to feel.  Christine

Note from Stacie:
Christine’s words hit me hard… every word rings true for me and reading her words brought the tears back to me.  Unfortunately, no one really wants to know including our families and we must keep it to ourselves as best we can.  It is also quite difficult to function while we carry all this grief.  She reminds me why I attempt this little niche blog… there really are other parents out there feeling just like we do and doing everything to offer their child the happiest life possible.  We can support each other through the miracle of the internet.

Accepting a bit of Insanity”  on KatsCafe.org also explores the depression special needs parents face.

http://30daysofautism.wordpress.com/2011/05/13/let-the-tears-come-dealing-with-grief-and-letting-go/ shares the difficult decisions made by a mom of a child with autism.

Here is another post regarding disability and grief… http://www.differentdream.com/2011/06/how-to-cope-handling-constant-subtle-grief/ 

Stumbo Family Story

Womanhood hit her like a ton of bricks!!! Guest Post by Christine

Our friends, Christine and Kaetlyn, have been missing from riding lessons the past couple of weeks.  I received this update from Christine this morning with permission to share all she has been going through lately.  Kaetlyn has similar disabilities to Riley, as you have gathered already she now has some added issues to deal with lately.  I greatly appreciate Christine’s willingness to share their past couple of weeks.  Stacie

It has been a crazy month…(some of the days/times run together in my mind, but I’ll do my best to explain). Kaetlyn’s journey into womanhood…

After Kaet got over the pneumonia, she was having difficulties that I could not figure out, so out of deductive reasoning, I decided to take her to the Gynecologist. (behavior seemed a bit cyclic) The Doctor did an ultra sound to be sure there was nothing obvious wrong that could be preventing her from getting her period as developmentally all indicated she should have or should start any time. All turned out “normal,” but we decided to start her on birth control to help with the hormones….
About one week later we were AGAIN at a loss of the extreme “behaviors” we were seeing. This time I took her to her pediatrician. She did a standard exam and could see nothing that could be distressing her 🙁  By this time, I was at my whits end…I all but begged her to start from head to toe and give her any and every test imaginable. I think she understood my desperation at that point. She agreed to start with blood labs, and urinalysis and strangely decided to do a STREP test. We started with the STREP test and while it was “processing” drew the blood work…before we started the catheterization to get her urine, the Doctor decided to review the STREP results and would you believe it….POSITIVE for STREP! Thank God we got that result BEFORE doing the catheterization! Rx for antibiotics and a few days rest we were on our way! …
2 days later I get a call from the teacher that Kaet had a GREAT day :), but my “little girl” had become a “little woman” YEP, the birth control/hormones had apparently given her the “push” to start her period. That wasn’t too bad that weekend we took it easy and stayed close to home since I had no clue what to expect….then came Monday. 
I sent her off to school; (she did well all weekend) I had no reason to believe it would be anything but a good day. Boy was I wrong. The phone calls from the teacher began almost immediately upon her arrival to school. Kaet was very distressed/unhappy. We kept in contact for most of the day and the teacher tried everything she could to make her comfortable. The teacher did not call much in the afternoon, so I thought things got better. When I picked her up at dismissal to take her to equestrian, I could see that things were still not good. I cancelled therapy and took her home hoping to get her comfortable in her own space….the night was HORRIBLE! Kaet cried and screamed no matter what I did. I even giving her pain meds and all her regular PM meds did not help relax her! 🙁 It was like something was inside her nagging and irritating her…
The next day I kept her home and called the pediatrician yet again; begging her to help me. She thought for a bit and decided she was going to call Kaet’s gynecologist and discuss the situation. No more than 10 minutes later the pediatrian called me back and said the Gynecologist would like to see her ASAP for another ultra sound. I got Kaet loaded into the car and drove straight there. By this time Kaet was a lot calmer than the day/night prior, but I still wanted to do all I could to get to the bottom of all this. The ultra sound tech did the scan and took a few shots of some areas and then sent us to wait for the Doctor to see the results…before the Doctor even walked into the room I could hear her outside the door saying, “I would be in pain if I had that!” – apparently she was speaking to an intern. She came into the room and explained to me that Kaet had “free fluid” in her pelvis (could be the result of a ruptured ovarian cyst). This could take a few weeks for the body to absorb the fluid and during that time Kaet could still be in a lot of discomfort! 

OMG! …there was no way I could go through a couple weeks of what I experienced the day prior!!!! 

Kaetlyn above with her mom, Christine, graduates 8th grade last week.

She told me she was going to call the pediatrician and discuss the results to see what she thought (apparently there is a surgical procedure to remove the fluid if we felt we needed to). After talking to the pediatrician, they decided to send her for a CT scan to see if there was anything else they could not see happening. (apparently free fluid can also be indicative of appendicitis). 
Off to the ER we went. Kaet at this point seemed to be getting better and I even debated in my mind whether it was worth all this while we were waiting, but since I wanted answers and Kaet can’t talk to me I felt it best to go on…
We started yet again with the blood test and urine test (what an “adventure” it was to get her cathed for the urine!). Then we needed to give her some contrast to drink in preparation for the CT scan. Now, of course we know that Kaet aspirates when she drinks, so we couldn’t give it to her that way. feeding tube time! (NOT) I didn’t have the adapter for the button to give her the liquid. The hospital had them, but of course not for Kaetlyn’s 🙁 I had to call my husband and have him drive to the hospital with it; more waiting! Once we got it and the test done, it was near 8pm (long day). The test concluded the same as the ultrasound and “surprise” lots of fecal matter too. 
Now that is all over with, things are calming down around here, but poor Kaet! Womanhood hit her like a ton of bricks!!! 
Christine

Keeping Hope Alive – by Lynn Parsons

As the mother of two adult children with special needs and a special educator, I’ve seen and done a lot. One common concern among parents, especially those with more significant disabilities, is how to keep hope alive. I suggest a three part formula, including health, information, and stories.

You’ve probably heard before that you need to take care of yourself. But a child with multiple needs can drain your energy. When you’re taking care of a child with special needs, you must take care of yourself. If you aren’t getting enough rest, seek some respite care. Try to eat the most nutritious food you can find. Exercise in any way that meets your schedule. Pray. When your life is in a shambles, prayer can bring you a peace and reassurance that you can find nowhere else.

Next, you need to be armed with information.  Learn all you can about your child’s disability, including proven treatments. Beware of anyone claiming a miracle cure. If you are unsure, check them out with the Better Business Bureau.

Talk to other parents and listen to their stories. Don’t focus on how they didn’t get the services they expected or the hardships they’ve faced. Look for stories of hope and success. Here’s one to get you started:

When my youngest child was in first grade, her teacher told me my daughter wouldn’t learn to read. I did some investigation, and taught her myself. She still has her disability, but is now finishing her freshman year at a major university. She has no accommodations or modifications. This will not work for every child, but you can believe that your child can live his or her best life. As a special educator, I’ve seen children achieve far beyond expectations. While no one should gamble on false hope, no one knows the future and what blessings await your child. Remember that there is an army of professionals out there who have dedicated their lives to helping children like yours.

Need resources? Check out my website at http://lynndparsons.com and visit the parent page. You may also want to check out my book, which will be available May 6, 2011. “(dis)Abilities and the Gospel: A Guide for Families and Church Leaders” helps families of faith include people of all ages with disabilities. Information about how you can get an autographed copy can be found on my blog at http://lynndeniseparsons.blogspot.com.

Lynn Parsons, MS
Educational Diagnostician
Hurst Euless Bedford ISD

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