Messages By: roaringredhead

Cyndi and Ulis...you are not abandoning your son by placing him temporarily in an institution where he will be receiving intensive speech, physical and behavioral therapy.  Alex is capable of much more, but unfortunately he needs to be taken out of his comfort zone to accomplish further goals.  Goals related to communication skill building (possibly sign-language) and self-sufficiency skill building (e.g. potty training).  You two are awesome! I don't think parents have the right to judge or react unless they had a disabled child.  My child has 2 hidden disabilities (autism like behavior and sensory seeking disorder).  I feel like my poor baby has a full-time job with her testing, monitoring, therapy and special preschool.  I ended up quiting my job because there really wasn't a daycare that could accommodate her needs. She needs a lot more attention than a "normal" child.  People just don't understand the amount of attention even a mildly delayed or disabled child needs, much less a severe disability.  Then, come the emotions. The feeling of loss.  The books I've read say that we mourn for the child we lost.  You know, those typical fantasies of what being a parent would be like.  The little league and soccer games, family dinner, Sunday outings after church, fighting about homework, prom, graduation and then self discovery.  We don't get those things, unless we fight for them.  Every little word, emotion, response or "normal" activity I get from my child, I have to work for, and I remind you that my child is considered high-functioning.  My only word of advice is take the assistance Dr. Phil is providing you.  Please, do not punish yourself during the brief time of separation you may experience with Alex.  In fact, plan a cruise or vacation, because YOU DESERVE IT.  You will come back rested and strong and ready to work harder than ever. Also, don't forget there are organizations for parents.  I like the family activities, (mainly picnics).  I'm sure Alex will enjoy it.  Lastly, Cyndi you have a great husband. 

My four-year-old has been diagnosed with autism like behavior and sensory seeking disorder.   She is considered high-functioning.   You know how when you have a baby, and friends and family say "Well, there's no manual out there for raising kids, just do the best you can." At least, that's the advice I heard.  There really is no manual out there...and that is especially so for a special needs child.  When my daughter goes to therapy and her special needs preschool,  I don't see the professional handling her like a piece of delicate china.  In fact, it's quite the opposite.  We are constantly forcing her our of her comfort zone, stretching her abilities and sometimes it gets uncomfortable for all of us.  I don't get the privilege of saying "ow baby please don't."  With limited communication, you have to make short and precise comments, and sometimes it seems cold or unfeeling.  I love my baby, and it's obvious that Cyndi and Ulis loves Alex too.  You know how, because they are there!  They are changing those diapers, giving those baths and getting him clothed, and much much more.  Institutionalization seems like abandonment to the Alex's father.  I've seen people abandon their neurotypical children for being no less than perfect.   Judge those people.

I promise to get off this darn computer soon and "get a life."  I have another post concerning your story, and I hope you and Cyndi read it.  Don't worry, it's all good stuff. I really wish you guys the best.  I can't imagine how hard it was to be seen under a microscope like this.  Cyndi and you are brave parents. 

A lot of people don't realize the limitations for help out there.  We think this is America where anything is possible.  Ohio also stops in-home assistance and all therapy at age 3.  I was told when my daughter turned 3 that it was the school's issue.  Meaning that my daughter would have to be processed for an IEP and placed in a special needs preschool.  The preschool is actually inclusive (6 special needs children and 6 "normal" children).  I was lucky that she wasn't  totally segregated.  We went through 3 insurance companies in 1 year.  Finally, we lucked out, and Cigna said that they would pay for part of the OT.  We were declined for speech therapy because autism is considered a pre-existing condition.  Autism is a neurological disorder meaning that the child was born with it; therefore, it is a pre-existing condition.  I was forced to quit my job, because our daughter simply was not daycare material.  Actually, in the end it all worked out.  My husband quit his job as a quality assurance officer and got a clerk position.  Our income came down to poverty level and we were eligible for state health care.  State health care covers everything.  SSI can also provide a state health card in Ohio.  I heard there are Autism grants as well, but I have never applied.  I do get a small grant from the board of MRDD, which assists with therapy and home improvements for therapy purposes. 

Good luck, and thanks for being brave enough to share your story with us.  I really enjoyed seeing how strong your marriage is.  A lot of marriages simply don't last when stressed and tested.

There are politicians and movie stars that  are forced to take a second mortgage in order to provide at-home care.  When you think of obtaining needed resources on that level...well...you can see why those resources are unattainable at times.  I hate the word "institution."  Institutions have historically been known as a horrible,cold, abusive and uncaring place to put our loved ones.  They are completely different places now, and the one Dr. Phil mentioned is one of the best.  I would think of it as a private school for children with special needs rather than an institution.  The director stated that it would be a SHORT TERM stay.  I know why you're hesitant.  I don't trust people around my daughter.  Not even family members.  I can count on one hand how many times we left our little princess with my Mom, and it was never more than a 4 to 5 hour span.  Our daughter has virtually no interactive speech, so if I ask her a question she can't respond.  She is just now learning to ask individuals their names, or ask for simple items around the house.  She and I have developed our own language. She is so dependent on me at times it is frightening. I wonder if she will ever be self sufficient, or will I be living in her college dorm room.  (Ow yes, I still believe she will be going to college.)  But, if our daughter was 12 or 13 years-old, I would not hesitate to get more intensive help. Many children that age go away to summer camp, or spend summers with relatives.  Alex may only be spending a few months there.  If anything else, look into a Family Leave of Absence form at work and find a cheap motel nearby.  Maybe Dr. Phil's show could help with the cost.  I don't believe this to be an unfair request. 

• Well said my friend.

I would hope to believe that we progressed since a 100 years ago.

'Love" is such an ambigious word at times.  I mean, do you think these families "loved" the 400 or so male children they kicked out of their warm and "loving" bossom.   The 400 or so "lost boys" that had no education, no money, no basic needs being met (e.g. food, clothing, shelter).  Were the families showing "love" to the little girls that they forced into "loveless" marriages.  Damn, that kind of love can kill.

Here, in North America, our founders decided to make religion and state seperate.  Our fouders came to this very wise decision due to accumulated knowledge and experiences from over 100 years ago. See, we wanted a great country with LAWS, and not just religion.  This religious sect has been found guilty of breaking such laws. They are guilty of child labor laws, marital age laws, child molestation laws, rape laws and education laws.  In this country parents can and do go to jail for not providing proper education for their children.  These people weren't even homeschooling past the age of 7 or 8 years-old.  How the hell can this happen in America!

You might say that these people are not our concern...that they are not our problem.  We should simply leave these "loving" families be.  But, I beg to differ.  As soon as 1 of those 400 "lost boys" were dumped on our doorstep to provide for, it became our concern...our problem. 

I just finished A 1000 Shining Suns, which is a follow-up to The Kite Runner.  Both books discuss the Taliban rule in great detail.  I'm telling you, the similarities in this religious sect and the Taliban were too close for comfort.

Extreme fundamentalists whether Jewish, Muslim or Christian seem to have the same methodology behind their brutish rule.  The first thing to go is education, then female rights, child rights and then the fear sets in.  This fear can come from physical, sexual and mental abuse, which usually starts at an early age.

Read Khaled Hosseini's newest book.  It helped me to understand Afghanistan historically and geographically.  The book is about 2 young girls.  Due to personal circumstances and the climate of war both girls were married at age 14 and 15 to a man 2 to 3 times their age. The book begins when Afghanistan was at a good time politically, culturally and religiously.  Then it goes down hill beginning with the Soviets, then the internal political factions and finally the Taliban.  It ends with North America declaring war on "terroism."    

It blows my mind that so many North Americans look at countries like Afghanistan and say, "Wow! How can that happen?  How can people be so brutal...so uncarring...so evil in nature?"  But, then we have this Christian "cult" right here in front of us, under our laws and government, doing the exact same thing.  And, we are actually left questioning, "what are we going to do with the children?" 

To be honest, I fear that the system cannot handle the re-placement of that many children.  That is why some government officials are thinking of placing these children back with their mothers. Ideally, no one should have to live under that insane rule created by a finatic mental case.  I think everyone, including the adults, should go into foster care.  Is it possible to create a special program just for them?  This current "cult" like behavior needs a major overhall.  I mean, if they want to live like the Mormons or the

Amish, then more power to them.  But, what is currently taking place on that compound is not acceptable!

I've always wanted to know, are there any black mormons?