Handicapped children?

  1. I was just wondering if there is anyone with a handicapped child/young adult on this site? My son who is mentally retarded is 19. I just got up the guts the other day to call and get info on a residential group home. My son, Johnny has always led a very lonely life. I mean unlike his sister, he never got invited to parties, sleepovers, and lets face it, he doesn't have any friends. He graduated this past May from high school. Johnny is on a six grade level, he can read, write, add, subtract, even drive a stick shift on a deserted road or lot. But he has no concept of danger and trust everyone! He is 6'6" tall and weighs about 246 lbs. So as you can see, he does intimidate some people. He started recently to work at a sheltered workshop from 8-4pm. But he is very bored. I am afraid to let him ride his bike in the neighborhood anymore, because some of the younger kids pick on him, and they have no idea what he is capable of when he loses control. My ex brother in law who is profoundly m.r. lives in a group home. They have activities all the time to do. Johnny tells me all the time he wants to go and live in his apartment(that is what he calls the group home). I never thought I would be doing something like this so soon. In reality, I know he would have more interaction with people, and have more of a social life in a residential home. But I'm crying about it just typing this. I mean, no one is going to love them like their mama! And even though I can go and get him anytime I want to, I just don't know. Has anyone of you ever had to go thru this yet? And if so, please give me some happy thoughts about this! Thanks, I didn't mean to ramble so long, but just thought some background would help you to see who he is!
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  2. 17 Comments

  3. by   delirium
    I don't have a handicapped child myself, but a very close friend of the family has a 20 year old handicapped son, he calls me 'Aunt Becca'. He was in a residential school until just this year, he's very sweet and trusting but needs constant supervision. He likes to build airplanes and lego hot rods and race them, he knows everything there is to know about ships, he loves to play video games, he's so sweet. There's just no other word for him.
    Anyway, his father abandoned his mother when he found out Nate was 'different' (they never married). Nate has been in a residential school ever since he became too much for his mom to control (I think he was 11 or so).
    He's staying with me for the week while his mom is out of town. She doesn't know what to do with him because he won't go back to school. We just found out that a staff member physically assaulted him, and there's a criminal investigation pending. Nate now thinks nobody wants him and is very depressed and angry.
    Its a difficult situation. Nate's sweet but he's also easily angered, he's a big boy (about the same as your son, actually), and he can easily end up out of control when he feels slighted or frustrated.
    I'm sorry I don't have any answers for you. It sounds like this place would be good for him, if you're sure its safe. This assault thing just totally freaked me out. I would definitely do whatever background checks/research/visits you need to do before you make the decision, but of course you know that.
    Let me know what you decide.
  4. by   kids
    I really feel for you debralynn.

    My youngest will be 18 in September, he is also a big boy (6'2" 245#).

    I had gesational diabetes and didn't know the risks involved in manipulating my diet to fool the doc so I wouldn't have to go on insulin (definately the days before the HbA1C).

    Justin was 6 weeks early (due dates per ultrasound), LGA @ 8 1/2# & 18 inches. Precipitous L&D, 1 and 1/2 nurses in attendance, apgars of 1, 6, 8. His nursery course was pretty typical for his situation...hyperbili, hypotonic, uncontrolable blood sugars, NG feeds. He came home at 3 weeks.

    I thought everything was OK.

    And it was until it came time to talk...everyone atributed his speech delays to being the baby...he never had to express a complete idea because someone always anticipated what he was trying to say.

    My kids went to an innercity elementry school that had a 33% turn over from September to June and could count on 50% of the kids leaving in June would not be back in September...due in part to every homeless shelter in the county being located within its boundries. The teachers at that school are to be commended for their dealings with children with some truely horrible home/social/behavioral problems. Nobody thought much of it that Justin forgot some things over the summer because he re-learned it quickly (I realize now I must have looked like a really crappy Mom).

    In the middle of the 2nd grade we moved to a new house and he went to a "better" (less overwhelmed) school...and I found out he couldn't read. He ended up being diagnosed as ADHD w/o hyperactivity. None of us realized that we had all changed to accomidate Justin's problems so we didn't know there was one until our Pediatritian sat me down and pointed it out. He was started on Ritilan and it was a miracle drug when combined with tutoring.

    At age 10 is dx with mild DD.

    Fast forward to June 30, 1997...9:35pm. A warm evening..quiet residential street with +/- 16 teens living in 3 block neighborhood (all friends). Neighbors 24 yo daughter offers him a ride up the block to our drive way on the hood of her car...he agrees and gets on. Girl pulls out and "punches' it, spinning a u-turn...son flys off the hood, head first into the curb. Spent 10 days in PICU, 7 days on the Peds floor and 30 days on the inpatient rehab unit.

    Over the past 5 years he has made slow and steady progress. He falls under the umbrella of Special Ed but attends only learning supported mainstream HS classes. His IQ is 119 but due to the 'short circuiting in his brain' he educational abilities are at the 5th to 7th grade level. He can learn anything that involves concrete thinking if he is given enough time and practice. Emotionally and behaviorally he is 15-16 but continues to slowly mature.He is very trusting and is easily 'conned' into being the muscle in other kids schemes. Luckily given his size he is slow to anger and has not been physically victimized (due, I am sure, in no small part to his equally large, quick to anger older brother). He is a great big sweetheart.

    He is qualified for SSI but does not receive it due to family income. We have been told he will likely never be able to live independantly...but he is to high functioning to be appropriate for any type of residential program. Basiclly he will need to live with a parent or sibling to watch out for him...or marry a strong, somewhat co-dependant woman.
    Last edit by kids on Aug 4, '02
  5. by   debralynn
    Some rollercoaster ride huh? It like our kids are just smart enough to know they are different, but not smart enough to be protected from the world! I sometimes wonder, should God had given them less or more? I'm sorry that you are on this ride also. But at the same time glad you wrote back! It always helps when you can share similar circumstances! I have one daughter(14) and she hates her brother! Yes, I have had in to counseling about this! So there is no way she would ever let him live with her! I really, wouldn't won't her to have to deal with it on their level. Johnny can be hard for me to handle at times! He will never get married, hes too MR. The group home I am looking at has a total of ten clients. Everyone will have their own private rooms, with two rooms sharing 1 bathroom. I have also been like you, to where our sons seem to fall into the cracks! My son takes Depakeen syrup for his behavior. His father and him have gotten into some real knock down drag outs! But its not his fathers fault, Johnny will roll up his fists and hit him right in the face! And my ex takes it! Johnny doesn't pull this with me, because I have him believing that I am not scared of him(even thou, I am fully aware you could kill me), also he believes I will fight him tooth and nail, or I sometimes tell him I will call the cops on him, and that usually settles him down for the moment! Funny you should mention the speech thing, I never knew (really dumb!) anything was wrong with Johnny until he didn't start speaking around age 2. (Hello, first time mother)! We were called D.D. at one time. At age seven, he was still not speaking, so finally his doctor picked up on him having apraxia, and steered us to Hattiesburg MS to a special school for children with this. Needless to say, it worked, now we can't get him to shut up!LOL Hope to talk to you again! Thanks for the time! Maybe we can share future things they do that puts a smile on our faces!!!!!!!
  6. by   debralynn
    MsPurp! You are a GREAT friend for giving his mom a break!!! Johnny can get really mad too! And it not like it was when he was seven! I mean he is a man in every way. And he is very strong!!!! Thanks for writing me back!!!
  7. by   Jenny P
    I'm dealing with the other end of life. My Hubby has just his 3 Aunts as his family. The oldest is 88 (her birthday was last Wednesday) and she is retarded. Then the 85 y/o is the one that broke her hip last March, and the youngest is 77. Mil, the oldest, has never had a job nor lived outside the home. She lives with the youngest sister now, who BTW had a stroke about 10 years ago and her only residual is she doesn't handle stress well.

    My hubby has always said "Well, that's just Mil" when she does something that upset me-- like when she kept re-arranging my kitchen cupboards when we had a double bungalow with them on one side at one time in our lives. Every time I slept or would go to work, she'd come over and re-arrange things so they would match their place! I'm left handed and their kitchen arrangement did not work for me!

    Anyway, about that point in our lives, I was frustrated with her and she couldn't understand why I didn't want my kitchen to match theirs; so I took her to the local Senior Center and got her signed up to go 3 times a week. I faithfully walked with her the 6 blocks until we knew she could walk it herself, and I paid for her lunch and her bingo and any classes and supplies that she wanted to take (she was quite the artist at one point).

    The good news was that she learned to socialize with others and is welcomed at the center and is recognised each year as one of their volunteers (she wipes tables each day she goes there; which is now over 21 years. We needed to move, so they moved also; and for a while she did not go to her Center. She reverted to not caring if her hair was combed and if clothes matched, etc. (she is a stickler for how she looks and what she wears when she goes to her beloved Center). So she is back attending the Center 3 times a week and Lord help you if you upset her schedule!
    End of story.
  8. by   debralynn
    Yes! These individuals do not take to change!!!! I can't imagine leaving Johnny here on this earth without me! I know this sounds morbid and selfish, but I hope Johnny goes before me. The thought of leaving him here with no one to look after him, and to protect him is unimagineable!!! I have learned that alot of parents of special needs children feel this same way. Even though it will kill me if something happens to him, I believe I will be able to leave this earth with a much peaceful mind!!!!
  9. by   OHmom2boys
    I have a 10 yr old son who has an anoxic brain injury from a near drowning two years ago. He was without O2 for approx. 30 minutes. His core temp was 78 though. They say that's what saved him, although that night the docs and nurses were telling me he probably wouldn't live till morning. His gases were horrible...I believe the word the PICU nurse used was devastating. pH was 6.96; pCO2 20; pO2 342 (From the vent, I assume); CO2 (Calc) 5; (WHAT is CO2?? Bicarb???? I never found a bicarb level on him) Base deficit was 27.6....K+ 2.9 (It said Hemolyzed, results may be falsely increased) So not sure what his K was. He was on lidocaine drip when I arrived at Children's d/t PVCs, was getting tons of bicarb, got two boluses of Calcium that I remember. Had 1mg epi and 1mg atropine at the scene. Pupils were fixed and dilated @ 6mm for the first few hours, then all night the nurse said they "were all over the place." One would be big, the other small. He was a mess. But I just KNEW he wasn't going to die. I had a feeling that night that he would make it. Maybe it was denial, I don't know. But Jacob showed the docs. Jacob is a fighter. They told me the first CT scan showed bad edema and to expect it to worsen over the next 72 hrs. They didn't even measure his ICP.....told me there was no use, there was nothing they could do anyway....personally I think the doc made the decision NOT to do these things because he had already decided Jacob was going to die. His notes say "Injury not an indication to be treated as typical HIE with mannitol, etc. Dismal prognosis...supportive measures." They gave him no mannitol, decadron, lasix..etc. WHY NOT?? I get mad everytime I think of that. 72hrs later Jacob's CT scan was no worse! They could not explain this! I can...I know who took care of my baby.

    Physically, except for some clonus in his right ankle and tight hamstrings, and very poor fine motor skills, he is fine. His problems are cognitive. Testing says his IQ is 78. IQ was tested at 70 two times after the accident; at one month post and 6 months post. He was so damn smart before. This was a kid who in kindergarten was doing multiplication and didn't even know it. He would tell me, "Mom, I know what 2 sets of 3 is."
    He loved animals and knew so much about them. I would take him to the zoo and instead of spending time looking at each animal for a second before moving on, he spent an hour with the marine biologist talking about the animals. His 1st grade teacher once told me he was the only kid she knew who, when she read a book about an alligator, could tell her where they lived, what they ate, how they behaved; pretty much every thing about them.
    Jacob has short term memory problems, although that's getting better. He has learning difficulties, major emotion control problems, depression to the point of talking of wanting to die. He's still very impulsive and inappropriate. Very gullible, will do anything others tell him to do because he thinks when they are laughing they are his friend. He is also very immature for his age. They tell me his insight into his injury is good. He knows he's different now, he knows things are harder for him now. He can remember how things used to be for him and he knows what he should be able to do. But this insight has also caused this depression. It's frustrating for him. He was much happier when he was oblivious....but I guess him being aware of his problems is a step towards healing...or at least dealing with them.
    I miss my baby so much. I miss the kid I had for 8 yrs.

    I kind of stumbled into this special needs mom thing. I don't want to be here. I sit in meetings as the parent representative for our school on special needs services and look around and think "What am I doing here? I don't belong here." Then the room starts spinning.....I realize I AM here. I HAVE to be here to help my son to the very best of his abilities. I have to go to these meetings. I have to go to IEP meetings. Because my son's life changed that day....in the blink of an eye everything changed.

    Sorry, bet you weren't wanting a book! One of "those" nights.....you know they kind...the kind where you sit and think how unfair this is to our babies. It makes me so angry that a damn creek could change my son's life forever. I've tried the blame game. I blamed the mom of the kid whose house Jacob was playing at that day. I've blamed Jacob's father for letting them go over there after the last thing I had said to him before leaving for work was "Don't let the boys go across the road." It doesn't work though. Hell, I even blamed EMS for not getting there quick enough. There is NO blame to be placed. All blaming does is make me more miserable.
    Okay, I'll quit now! Sorry, needed to ramble a little tonight.
    Here's a link to Jacob's website. His brother was also involved...because he jumped in the water to try and save him. He's my hero. The accident happened 5 days before his 10th birthday...his birthday present was a trip to Children's Hospital to see his brother who was just coming out of PICU that day!

    http://www.geocities.com/jacobdstory/index.htm

    WOW! Thanks for letting me vent! Sorry to have taken up so much space!
    Kim
  10. by   Jenny P
    {{{Kim, Jacob, and family!}}} Wow, Kim what a story!
    I lost a 2 year old niece to a car accident drowning; it hurts either way, you know?

    Peace all; I'll keep these kids in my prayers.
  11. by   debralynn
    :angel2: I'm sending BIG HUGS for you OHMom! Take as much space as you want! I know! Talking about our special children is alot of words! Just think how much space we could take up if our tears could be visualized! Isn't it amazing how every little detail we can remember about our special child! I can tell you everything about my Johnny, but as far as the milestones my daughter made, they are just a blurrrrrrrrr! I guess because I was just so happy that my daughter did everything she was suppose to do when she was suppose to was all that matter! I miss the child that I was expecting 19 years ago. I know that sounds selfish, but we were expecting so much for our first son! Special Olympics wasn't the word that was in our vocabulary then!Its really weird, when I was pregnant with my daughter almost 5 years later, we had NO expectations for her! I guess that was our wall coming up! As far as you knowing who saved your child, AMEN! I too, know why Johnny has come as far as he has! I can remember when I had to go and observe my first special school. I kept telling my self as I stood there and looked at those special needs children thru a two way mirror, "my sons not this bad"! Can you say DENIAL! But I now know that denial can be a way of protection! I think denial is ok as long as you don't make a life of it! May God continue to bless both of your boys! And thanks for venting! It kinda helps sometimes knowing there is someone else out there who knows EXACTLY how you are feeling about certain things!!!:angel2:
  12. by   2MagnoliaTrees
    My son has Aspergers Autism and while high functioning it's the lack of social and organizational life skills that have me so worried. I don't know if he'll ever drive or if he'll be able to find employment where they will be able to "deal" with him. He wants to go to college but I really don't know if he could handle the pressure and the changes. Talk it over with Johnny and give it a trial run. You can always bring him back home if it doesn't work out. God Bless and prayers going out for y'all.
  13. by   OHmom2boys
    I agree with you when you say how we remember every little thing about our child. I watched Jacob go from a newborn to a toddler twice. I seem to have every day of PICU and rehab engraved in my brain. I definitely appreciated his first steps, words, solid food, bladder control...etc. much more the second time around. I took for granted the first time that both my babies would just do these things. I can't believe the things I took for granted before the accident. I just didn't realize what I had; How much of a blessing my boring life was.
    It is so good to have others who do understand my feelings. I hate being like this, but I have so much unintentional resentment towards people with normal kids who complain to me about little jonny getting a B on his report card. That's one of my big things. People who KNOW Jacob's situation will call ME and complain about their bright, intelligent child's report card. This particular person is a family member who KNOWS Jacob's IQ, his difficulties with learning new information. She knows Jacob's problems and she likes to call me and pull the "woe is me" game. Yes, she works full-time, yes her child is very busy involved in sports. But when I say something about running my kids here and there she likes to say "Welcome to my world." EXCUSE ME???? Does she really think I like my world?? Does she think I like looking at my child and not knowing what kind of future he may have? Does she think I like thinking about what must have gone through his little mind while he was struggling and drowning? Does she think it's fun to hear my 10 yr old say he wants to die??? Welcome to my world?? I'd take her world in a second if my biggest worry was whether I was going to have time to get dinner in between ball practices.
    I know it's not her fault I have these feelings. I know she doesn't mean anything by it. It's my problem and I'm the one who has to deal with the resentment I have towards her. But I do feel she may be a little insensitive at times.
    It's been two years and I still have a lot anger. I'm not sure the anger will ever go away, but it's getting better. You should have seen me a year ago!
    Magnolia, my son is very high functioning also. He also has big time behavior problems. Major social challenges. We have been working very, very hard on the appropriate vs. inappropriate behavior. Some days I think it's working, then he'll go and do something totally off the wall and VERY inappropriate.
    One day I caught him mooning cars as they drove by!!! Funny? Yes....but sad too.
    Or he'll go off on me or his brother. He has actually kicked me and hit me at times. He uses curse words during these rages that even I wouldn't use! This is not something he would have done before, but he loses control so easily. People don't understand because he "looks fine" as they all like to say. I guess in order for them to understand he has a brain injury he should have a gaping hole in his head, or not be able to walk or talk, or something. I hate this 'invisible injury'. I get so tired of well meaning people trying to tell me how to parent my brain injured child. Most think I'm the problem because I don't discipline him correctly. How can you discipline a child who can't control what he's doing? GRRRR!!! Jacob takes Ritalin and Prozac. Both have helped so much.
    He is doing better though. I just keep wanting more and more. When we weren't sure if he would live I told God to give me what he could of Jacob and I'd be happy. Just let him live. (Selfish, I know..what if Jacob had been in a PVS for the rest of his life?) When he was first coming out of his coma and off the vent, I told God I would take that and be happy. Then he talked and I wanted more...then he walked and I wanted more! I kind of lied to God. I'll never be satisfied until Jacob is better. I'm happy I have my boy, but I want so much more for him.
    Jacob is aware of his problems. Last Christmas he tried to get his grandma to tell him what one of his presents was. She said no and he said "Aww come on, you know I'll just forget anyway." That was another of those cute but sad ones.
    Just the other day he told my mom, "I have a few brain cells that are shot, but I'll be okay."
    Sending prayers and hugs for all your children. Thank you for the same!
    Kim
  14. by   MollyJ
    Used to do CM on tech dependent kids.

    Debralynn, re: group homes. It could have some real advantages for your child but act just as if you were thinking about a care home for an older relative. Be a persistent presence after you make the best choice of a group home. Be a persistent advocate, as you have already been, for your child.

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