Stepson With NF1 Learning disability he is 16
I have stepson who has a medium to severe case of nf1 his IQ is 52 his mother my wife is my grade school sweetheart we have a beautiful 18 year old daughter i have 3 boys of my own but this is the story my ss is just going to the 9th grade he will be 17 in 3 months and until i came back into his moms life he had no diagnosis and no extra help his situation is causing stress on the marriage in the way that we cant go anywhere without him my wife dont want to leave him with anyone and i cant expect him to do what my 10 year old does he is scheduled to get out of highschool when he is 21 i am having a awful time with this because my wife is so beautiful and the daughter and he is not i am sorry i am not cruel but these are the facts i feel like eveyone is staring at us when he is with us he gets excited about things that my sons did at 5 year old someone please tell me what i should do my wife and i will not divorce and my marriage will not fail because of it we need help i have never been here before and i want to know how to move forward i find myself not talking to him which i know cant be good and its only because the response is usually dissapointing he is very forgetful and cant follow simple instructions at times he will eat all of eveything if i dont stop him so now he cant go in kitchen without supervision its hard WE NEED HELP PLEASE GIVE ADVICE !!!
PS - my husband's daughter
PS - my husband's daughter will be 17 in 2 mos and she'll ALSO be in 9th grade...she has a "normal IQ"...I'll trade YOU!!!
I can understand your frustration...believe me my son is special needs and it drains a family...but you must understand this is NOT his fault, as opposed to the losers we have to put up with that are just evil. I don't know what nf1 is, but you need to check into learning MORE about it and maybe talking to other kids with the same diagnosis that you are NOT related to...I think when we see it in our house it's very hard...honestly, I believe if you are able to talk to other kids who are the same, you will learn to have more compassion for him and help him more.
I also think that this is something that you need to talk to your wife about. How can he have such a low IQ and your wife did NOTHING for him before you came back into your life? That's not the kid's fault...you are blaming the wrong person here for the issues...
I have contacted MY Employee
I have contacted MY Employee assistance program at work trying to get counseling trying not to give up and i have had long talks with my wife because looking at his pictures you can tell something was seriously wrong a long time ago she has a loving family which i told her is good but god gave us tools and things on earth to help us through this and to help him i often ask why didnt she act i think it was guilt and shame i know the first step to solving a problem is accepting that there is one !
Yes he has been diagnosed we
Yes he has been diagnosed we had several tumors removed after i forced my wife to get him checked from his head i know that nf1 has from what the drs has told us to do with his learning disabilities dont know how to proceed i just want peace in the house and dont see it in the short term just wondering will he ever be able to live on his own if not my wife will never be free i think guilt consumes her she is a quiet lady and doesnt talk about it until i bring it up !
i want to know why did you
i want to know why did you marry her!!!!!! now your embarrassed by him! hello! he needs you and feels everything around him. you are hurting him by disengaging from him.you got issues that you didn't think thru the possiblities before marrying her. that's on you not him or her!you knew what you were getting into when you got with her.i am very fortunate to find a caring man who loves and adores my sons. they are not easy and its scary for him too but he never once treated them like you have with your ss.
there is nothing to gain by looking back and feeling guilt or laying down blame. you all need look to the future and what you all can do to make things work. what you can do to help him now and what you all can do in the future. he is your family too and he needs all the love and care he can get. i know he is your ss but what if he was your blood son? would you treat him the same?
my oldest bs is very pron to outbursts in public places. he also does what we call the Stevie wonder happy dance.he is profoundly autistic. H and i learned to ignore other people stares because they don't know. that's not something you can control. so don't let others control your feelings.by the way his excitement over things a five year old would get excited, he is a lucky young man if you can catch my drift.i wish i had days i can get excited about the same mundane silly things.
support groups will help you both to handle things and make all of you stronger. its extremely scary i know i worry everyday about their futures(both my bsons are autistic). all you can do is learn everything you can and look at his wonderful qualities instead of his lack of qualities.
I like this response. I know
I like this response. I know it's not easy. I told my DH today that SD24 (w/autism) has been spending too much time w/ us and that I was getting overwhelmed. He wants me to tiptoe around her 24/7. During the day, it's all about her and from 11pm-9am he wants me to whisper when I talk so I don't disrupt her sleep. I feel this is unreasonable and that she needs to live in the real world a bit. Do you know parents w/ adult children w/ autism ? How does it work for them?
rozylady2 my wife couldnt
rozylady2 my wife couldnt tell me what the problem was or the extent she completly ignored what was going on with him in school and the tumors shame on her but i forced her to take him to a specialist and thats how we found out and to her surprise she found out she had it too at 41 years old i am working on my issues and seeking help so i can not disengage and deal with what i feel is embarassing thanks for your response and pray for me as i will for you !
SHAME ON HER ?why put blame
SHAME ON HER ?why put blame anyway? Are you feeling she lied to you? think she knew and hide it form you to trap you in marriage? that`s messed up dude.you need to take accountability in this too. you chose to marry her knowing something was up with her son.you yourself admitted it, knowing the signs were there. this condition even has psychical signs.you had to have known that. plus from what i read this condition take years to diagnose too.
whats important is now.you in my opinion need more help then the ss. you yourself moved off from a young man who needs you more then anything in the world.im sure you have disengaged yourself from your wife as well for your still placing blame on her. you may not be able to accept him which means you got a serious decision to make for its not right nor fair of your wife to live with you knowing you cant accept her son which in turn can not accept your wife.our children are us and thats makes us one unit a whole. your family from you wrote here is not a unit.
look i know its hardest job in the world just being a step parent but to be one to a special needs child regardless of age.its takes true strength and love to be a parent to a special needs child. do you have that?
http://www.ninds.nih.gov/diso
http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibroma...
read this. it may help you understand whats going on with him better.
I read in Newsweek that
I read in Newsweek that statins (cholesterol reducing drugs) have been shown to be helpful w/ NF1. I know people w/ NF1 and they have learning disabilities...it doesn't cause it but it is "concommittant" which means happening at the same time but not necessarily because of or influenced by. I am guessing it's a problem with a number of genes that effect a number of different areas.
try the website www.care.com they offer respite, tutoring, etc. Also, get in touch with your local ARC or Developmental Disabilities office. DDS I think it's called. There are social groups, transportation, job coaching, weekend care providers, and more. Get him on social security/disability so you can pay for extra things he needs.
My SD24 has NEVER been diagnosed properly. The first psych tests were only a few years ago. She has never been to school, had a job, or had a friend. I think parents want to protect their kids from the outside and protect the outside from their kids. I hear you about him being unattractive. We live in a looks-oriented society. Even babies look at pretty people longer than ugly people. How long have you been with your wife? Do you have an 18 year old or and 18 month old together? I am confused.
You need adult time to keep your marriage alive. Make it a priority. Pick 1 day a week that you designate as SS day. Spend some part of that day giving him your full attention. Take him out somewhere...take him to a social group for people w/ disabilities. Talk to the parents/step parents there. You need to understand his disability more. I am in a similar boat...I know of all these great services, but BM, DH, and SD24 won't make use of them. I am seen as trying to get rid of her...which is partially true but she deserves a somewhat independent life. Make sure there is a transition plan in his IEP at school. Go to the IEP meetings. Schools listen to husbands more. Maybe go to a voc school? Does he like animals? Have him volunteer at a shelter and take dog grooming lessons.Give him a skill he can use. Write down simple directions for him for different tasks he isn't doing (how to run the washer) and make them into a small book to follow. Get 2 family members to agree to take him out one night a week every other week (so you have 1 SS free night a week). It takes a village and you've got to get your village people in order or you will be living a long, stressful, unhappy life. A few small steps can really take the pressure off...for a little while. Then take another step...
Hugs!
Thanks for the response
Thanks for the response everyone i have taken the advice to heart we are actively trying and i think one of the links posted by rozylady2 will help and witsend71