Topic : Raising a Special Needs Child

I posted another comment earlier about my son being referred to a residential treatment facility.
When I read your post I knew I had to write back because I relate to this like you would not believe.

My son who is nine first started having signs of Tourettes Disorder at around the age of 6 and things have only gone downhill since then. My son's therapist and doctors also say that the multiple disorders my son is suffering from is pretty rare and honestly are at a loss at how to go about treating him. He has throughout the years been diagnosed with Tourette's Disorder, severe ADHD, Bi polar disorder, OCD etc etc...now they are thinking "just" Tourette's and severe ADHD; but recently said that he is showing signs of early onset schizophrenia.
When he was about 1 1/2 years old he would steal knives out of a cabinet and stab up the furniture in our home, he would have violent outbursts that would last hours. At 6 he developed motor and verbal tics, around this time he would occasionally say he heard voices or saw things that were not there. He has a horrible memory and like your son, has trouble remembering things like his own friends names. He cannot keep friends and thinks that people who are mean to him are his friends..like he can't distinguish between the two. He will call anyone his "best friend" even total strangers.
 He has issues with compulsive lying, even when he will do something right in front of me he will lie about doing it. He has problems with compulsive stealing (mostly with food) so bad that at night we have had to lock up all the cabinets and put a lockable box in the refrigerator to keep our cold stuff from getting stolen and taken to his bedroom to gorge himself on.
 Out of the blue he has started acting out in an almost sexual nature...even though I have never allowed my children to watch movies or programs that would remotely contain anything of that nature. I caught him drawing a very accurate picture of a woman's breast and at a different time making what seemed to me sexual type noises.... he has for some reason started trying to kiss everyone and has had complaints from other children's parents about this at school. He has always had boundary issues such as standing too close, wanting to touch the person he's talking to and overtalking like you wouldnt believe. He drew a picture again the other day of what he called a "trap" and it looked pretty sinister. When I asked him about it he said he was wanted to build this thing to "trap" his "friends"  as payback. Out of nowhere last week after watching a particularly sad movie he came out and said that he wanted to cut himself with a knife.
My husband and I along with our 4 yr old daughter have begun sleeping in our room with the door shut and locked almost out of fear. I hate to isolate him from us and us from him...I don't want to make him feel unloved but I can't risk him acting out around his sister.
It seems like every few months he will pick up new bizarre behaviors and other ones will be left by the wayside for awhile, he seems to be angry every day for no apparent reason. I feel like I am in way over my head here and am not equipped to deal with behavior of this magnitude, and so often feel like giving up and running away (as if I could). I can only imagine what is going to happen once his hormones kick in and he starts getting bigger and stronger.
He has been in and out of psychiatric hospitals but he is very smart and knows exactly what the doctors want to hear so that he can come home, and within minutes of leaving the hospital it's back to the same old stuff. So now I am faced with possibly of putting him in a residential home for up to a year possibly. I don't really know what other options I have left. I love my son more than he can even comprehend, but I find that everyday as soon as he enters the room the air almost changes and I find it harder and harder to even spend time with him...

My apologies for writing such a long post, but reading all these other posts kind of opened the floodgates.

If anyone can relate...please drop a line!

When My son was a baby he would rock in his crib so hard, he would bang his head aginst the crib and wall-He Broke 3 cribs and 2 toddler beds doing this.  He Is now 14 yrs old and since he  was a baby I have had behaviroal issues with him-The older he gets the  worse its gets. He still rocks,however does not display signs of autsim other than the  rocking.  I have always believed that he  suffers from brain damage from headbanging. Every person he has ever gone or been testing with has always dismissed me when I have expressed my concerns.   His main behavioral issues are impluse control,not following direction and viloent outbust. This has been going on since he was a baby. The older he gets the worse he gets. He has been in 2 boys,Inpaitient Psy hospital,and in and out of counslers. At current he has been made a ward of the court for Domestic assult and battery on me,he has spent time  in Juvie for that and is now awaiting his punishment. And with all that he still does not get it. The dots just dont connect for him- Something in his brain is not making the connection. I have been raking my brain wondering why this kid is so out of control and these outburst at the drop of a hat and why its always been like this . Why has he never made the connection,why does he have this impluse control problem. I keep coming back to the  possiblity of brain damange,More specificly "Frontal and or Temporal Lobe brain damage
"Which is  the part of the brain that control behavior.   Id there is anyone out there that might have any answers for me I  would love to hear them. Im so angry with him for his behavior that i cant stand to be around him, But I wonder if it is brain damage then he is not a nutcase, and if Im wrong and just simply he a troubled kid then what,Juvie,boys home , what? What is the  answer.Anyone please help. Im at the end of my rope.

 

 We have truely been blessed with our little angels. Only another parent understands how emotionally draining it can be to care for a child with Autism. We also get to experience thing with our little angels that is so humbeling and rewarding in ways that not just anybody would understand or appreciate. This is why God gave you a special son, because he knew that it would only take you looking at your son jumping over daily obsticals and sometimes stumbling and even falling to say if he can press on another then so can I. You must of done something pretty impressive for God to give you the honnor to raise, mold/hold, and love him in this life! CONGRADULATIONS! Now enjoy your blessing and continue to help others see theirs. Thanks for passing on your special story an keep on passing it in tears for lots more years, that is absolutly a perfect discription of a perfect emotion. Keep your head up and SMILE!  BRYTONEDBYASD aka Jami

I have a dauhter who has special needs due to shaken Baby Syndrome. She lost 63% of her brain and suffers from immune defeciency, growth hormone defeciency, hemaplegia, developmental delays, and breathing issues. She is 17 months old. I think the hardest thing for me personally is making time for my other daughter, and the not knowing what the future holds for her. Will I ever see her walk down the eisle? Will she ever live on her own? Who will take care of her when I am gone? It's impossible to me that anyone can love her like I can and not see a disabled child but the child that snuggles with me and dances to disco.

Jessica

I do not have a child with Autism, my daughter has SBS. When I was told God only gives this to parents that can handle it, it made me angry at God. I think my advice would be its ok to grieve. Just don't let it cripple you. Cry, write it down, punch a pillow, pray, then wipe your tears and remind yourself there will be better days. There are times when you just live from one moment to the next and times when you can live one week to the next. I guess I just have faith that the road may be hard but in the end it will work the way God has planned. I dont know if that helps at all.

 

Jessica

My daughter has severe ADHD. She was diagnosed at 2 years old it was so bad. She has no impulse control, she is hyperactive, her attention span is 6 seconds(it was tested) and she is rude, disrespectful, basically we cant take her out with us. I love her very much but I dont know how much more I can take. She was on meds but her phychiatrist had her on anti-pyscotic meds. I had to put my foot down when she tried to put her on lithium! Gracie can be very sweet but the moments are few and far between. She will spit on complete strangers, tell you to shut up, and if you try to discipline her she will tell you to get your hands off of her. I have tried everything. I have read so many parenting books, watched Dr.Phil, gone to OT, BT, PT, a phychiatrist, a phycologist, a play group for children with behavioral disabilities. At home I have tried time out, redirection, postivie reinforcement, rewards, smiley charts, spanking, firm talkings, EVERYTHING! when I do anything good or bad she calls me stupid and spits in my face, If I pop her face she smacks me back. I dont know what to do for her. I know who she can be, I just dont know how to help her get there. Any moms out there that can relate PLEASE help me. I have another baby on the way and I need to stop this behavior before it gets worse. Thanks.

I'm the blessed mother of two children with special needs. My son is 6.5 yrs old and has ADHD, speech delay, fine and gross motor delay. When Joe was born I knew he was special. By the time he was 1yr he was extremely hyperactive. I thought boys just were more full of energy. Joe always did not do well in large groups growing up or daycare settings. when he was 3yrs old ,at the advice of the pre-school program we enrolled him in, we had him tested. The school basically told us they could not handle Joe in a class of 20. To our disbelief, we were told our son was at high risk for ADHD, severely speech delayed, and had some motor issues. It was recommended Joe start therapy in a program asap. Until kindergarten ,Joe went to a integrated pre-k and received speech therapy. By the time he was ready for kindergarten ,Joe was placed in a self contained special ed class with the primary focus on speech. Then soon after OT, and PT followed.

 

When it was time for first grade Joe was placed this year in a regular general ed class, but there are 5 children with identified special needs. There is also a special ed teacher ,and a teachers aide as well.  Joe has academically soared in this class. He is extremely gifted, however, the ADHD seems to inter fer in his ability to focus. Joe needs much redirection and extra support. He is still receiving OT, PT, but he is still receiving speech therapy, but in a group setting. Joe's delay is pragmatic, which is directly related to his social language skills.

 

I became more concerned this years due to Joe's increased behaviors and not seeing any type of improvement. Joe has become increasingly loud, disruptive, defiant, abusive to his little sister, and frequently using inappropriate voice tone,language, and carrying on conversations with himself while my husband and I would be having conversations. He always interrupted, does not like to take turns, always has to be first and cheats when ever he plays games. The funny thing is, he would behave differently at school due to the more controlled environment, but at home his behavior has become more alarming.

 

I brought Joe in to see our Pediatrician hoping he would refer Joe for his long awaited visit with a Psychologist to try to sort out what these behaviors and compulsions he has been displaying were coming from. I felt the school has been just dealing with Joe and his problems needed some other sort of attention. This is when our doctor suggested we place Joe on Ritalin. My heart sunk! I knew this day may come but I was not prepared for it. I felt like a failure as a parent. I became very worried about what would happen to my precious boy? I thought maybe he would be lost within the medication. I had heard over the years Ritalin has been much improved, but I was still frightened my son would be lost forever. We started Joe on 10mg 2x a day and the change was almost instant. Joe was still active but in a calmer sort of way. Some of those old behaviors just vanished. Joe also is improving daily at school. I was so worried Ritalin was going to steal my son from me but in-fact Ritalin has done the opposite, it has found my son! He was lost inside himself and Ritalin has brought him back to us. For all the parents afraid to give Ritalin a chance, don't be afraid.

I have a son with DS that is now 22 years old.  He used to even "take it out" in public it got so bad.  I can tell you that people with mental delays have little to no inhabitions and when it comes to something that is inately human (sexual gratification and feelings) you need to let your child know that it's normal and let her have her time.  I agree with the other post and I taught my son that under NO circumstances should he EVER do this in any place other than his/her bedroom...this was his "private time".  I taught him that sex was something between a married couple etc....and that if he wanted to "do that" he needed to go in private.  It worked beautifully after the first time!  He learned VERY quickly and he adjusted his behavior quickly. I think having a safe place, having someone that loves him talk to him about it and letting him know he was OK helped tremendously.... and he has no shame in that at all, nor should he.  His father (we are divorced) disagreed on this subject.  Why I have NO idea.  Let there be an open discussions with your daughter....believe me, you will be thankful in the long run. She will feel good about herself and not like a freak....and even though society has come a long way, some people are still "weird" about kids with DS or any mental retardation, so having the parent letting her know she isn't weird about that is going to let her feel good about herself...as she should. 

I worked with a charming little seven year old years ago who was diagnosed with autism (today they would call it Asperger's). I had to have a little talk to him about masterbating in the classroom and told him that he couldn't do that in front of other people. He said, almost in a whine, "But it feels so good!"  Out of the mouths of babes, I guess. :)  I explained to him that it was like going to the bathroom--something you do by yourself when other people aren't around. He got the idea, but it had become a habit. It's not easy to break a habit--especially when "it feels so good!" Improvement is what I was looking for. In the classroom, it was often a matter of giving him something else to do with his hands (one of those squishy balls to play with) or giving him a code word or gesture that no one else would understand that would let him know he was touching himself.

 

Here's another funny one:

Two well known professionals in the disability field were taking their young adult son with autism and mental retardation to a gathering with some high-ranking public officials. His parents had prepared him well. When the woman who was hosting the party shook his hand and said hello, he said, "You are not supposed to touch yourself in public." The woman told him that was true.

 

These parents don't hesitate to share this story when they speak at conferences. They laugh, and so does the audience. If it weren't socially taboo, probably we wouldn't think a thing about seeing people with their hands down their pants on the bus or at a business meeting. Pretty funny thought, isn't it? One of the wonderful gifts kids with disabilities give us is an honesty about our humanity.

 

You parents seem to be getting a good handle on this issue (maybe not the best phrase). You are doing well to help your kids understand social mores. They are not going to be perfect at meeting those expectations, of course. Sometimes, it's okay just to laugh and realize you don't need to get uptight about what other people think.

I know this thought provides comfort to some people, but I know some of these kids are in dysfunctional, abusive homes that only become moreso from the stress of the disability. I can't get my head around the thought that God would "choose" these parents as special people to raise these kids. (I do believe these children can grow up to bring good from their past, as we all must learn to do, but I don't think God ever wants a child to have parents that are abusive.)

 

I have encountered many parents, like so many I see on this forum, who choose to see these children as drawing them closer to God for many reasons. They might have challenging days, but they are thankful for what they learn about themselves and others because of those days. They enjoy the gifts these children bring to their families--gifts that overpower the limitations. They shine a light on those gifts for society. They get angry, frustrated, and tired at times and even experience false guilt because they are human. However, they choose to keep their focus on the bigger picture of the potential these children have, not to be "special" as a euphemism, but to be special because they are. The spirituality in these families is remarkable and inspiring--most of the time, they don't even realize it. I think God smiles at those families, not because He specifically placed a child that has an illness, severe injury, or disorder with them, but because they have chosen to bring so much good from the lives of their children with disabilities.  Of course, this is IMHO.