My Daughter Is Mentally Retarded

I thought something might not be right when my daughter didn't talk or walk on time, When I took her to her pediatrician she said it will probably just take her a little longer but she's fine. She started pulling her hair out around 15 months and she didn't laugh like my other children had. The pediatrician finally said to take her to speech therapy around 18 months. From there I was referred to a developmental center for evaluation and she was determined to be "developmentally delayed". That's still the terminology her medical doctors use on her paperwork. She began PT, OT and speech therapy at UCP at 18 months and attended the daycare program there when she turned 3. I took her to geneticists, neurologists, cardiologists and developmental specialists and she had every medical test invented performed, some of them more than once. Everything always came back normal. When she was 5 I took her to an Autism specialist. He did a couple of exercises with her involving blocks and patterns and said, "I don't think your child is autistic, she is mentally retarded and I would guess her IQ is probably around 50 and she will probably only mature to about the age of 8". I wasn't given any paperwork, any formal diagnosis. I remember leaving there in kind of a numb state. What was I supposed to do with this information? How could I fix her? She had her first IQ test before starting kindergarten. It came back 49. She was catergorized into the trainable mentally handicapped program and started kindergarten in a seperate class. She's 9 yrs old now and physically healthy. She's on a special needs little league team and continues to be in the TMH program at school. Sometimes it is very hard to be her mother and her sisters. She looks normal so people don't always understand her behaviors when we're out in public.Sometimes I feel like no one understands what it feels like to be her mother. To know that she will never have a normal life, never fall in love, get married, have babies of her own. There are no words to express how my heart aches for her. I love her so very much.
tammyburling tammyburling
41-45, F
56 Responses Aug 28, 2010

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I have gone through the same thing with my now 48 year old daughter. I took her everywhere just as you did and never really got a true diagnosis. She still lives with me and has become more of a burden in my life as I am now 72 years old and still must take her to doctor's appointments, buy her food, pick up her many prescriptions (she also has Type 1 diabetes) and put a roof over her head. My life has been over for many years as I could never remarry or even have a "friend" due to her presence. Do I sound bitter? Yes, I am. My only alternative at this time is to put her in assisted living before I die as she will never be able to care for herself. I am so disappointed in the medical professionals who could only say "there is no surgery or medication that could help her".

Hi there,
I am a mother and very scared for my own child who has no diagnosis as we speak, but has few challenges which are out of the normal characters for his age.
However one help I can suggest is to seek alternative to western medicine. It does wonders and the child's condition improves a lot.,
Plus please get food sensitivity tests done for her.... Eliminating what her body doesn't like, puts her brain at peace. She can function better.
I am not taking my child to the medical doctors anymore. I was told my child is mentally retarded and there was no cure for it. I felt that day was the last day of my life... But my religious beliefs have thought me that for every illness there is cure.... We just need look for one.
Thus, on that same day, I saw a Chinese medicine Doctor.... He is helping my child get better... My chil has improved a lot.... A lot!! According to the Chinese Doctor, my child should be same as other kids his age after his next bday.

Thanks for sharing your story. I am going to look into the food sensitivity. I have been told to eliminate red dye but it's in everything and just not realistic for us. She has pretty severe anxiety which limits our ability to take her out for a lot of different testing and treatments but we do what we can. My faith is my foundation that keeps me going so I am with you on that one! Glad to hear your child is improving. God bless you.

My cousin is 20 and mentally disabled. My aunt and uncle never got her diagnosed, never actually had her finish school (they claimed to be homeschooling). My cousin stayed with my grandma for two months and they never even called to check on her. My grandma was looking into assistance for her. Trying to help her get diagnosed, get help to get a job. My cousin wants to function like a normal adult, she wants to do those things but my aunt and uncle won't let her. When my grandmother called them to get help with applying they decided to come pick my cousin up and take her home. Didn't let her say good bye. Didn't give her a voice or anything. Is there anything I can do? Legally they never got her diagnosed so she is capable of making this decision without their interference.

hi tammy care to be friends

I have a cousin who is 17 and mentally retarded.She was in a car crash 4 years ago when she was 13 and suffered brain damage and now has the mentality of a 2 year old.she is normal size and can walk normally,but talks and act like a 2 year old.She wears cloth diapers and plastic pants 24/7 and is changed just like a baby and uses a pacifier and drinks from a baby bottle! Last easter,she was dressed in a pastel pink,poofy,mid thigh length easter dress with a matching pink easter bonnet.lace socks and pink shoes and had baby print plastic pants over her cloth diapers.It is sad seeing her this way as she is a good looking and i feel sorry for her.

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All I'd like to say is that there are a lot of people disabled young and middle aged and elderly. I've vseen alot of them do many things get married have children and work (not just at a workshop. Even go to collage. And yes live out on there own some with supported living a roommate. Have someone come in and help them with check books and shopping and seems there very happy to do this( my handicapped friends. And they go to movie's and yes some date and drive cares . and I know most of them love to go one the speical events to dances and and no one I have ever seem at any of these things here has ever made fun of them. So its good for them they have a life, friends, date . and learn to work there problems out and use the abilities they have. Yes I am a mom of 2 handicapped girls. I wish could do alot of things which I've learned some of it many never happen but I guess those where my dreams for them and plan. I guess God has a better one. But all the disabled people I've met seem caring and try to help where they can. They are all very speical in there hearts. Asked the school about supported living and supported employment for your daughter and speical olylimics. She may really live that .

I hope you and your daughter live a happy life. I struggle with Asperger's Syndrome, MANY people at my school call me retarded because of it. I sorta know how she feels, I look normal, and everybody gets mad when I "Act abnormally" it's very frustrating when people ask me why I rock back and forth

As I read all of your posts, I am in tears because this is my life too. My ID daughter just turned 18 and because her peers are moving out and getting on with life, she wants to do the same. If she would truly be "ready" to handle living on her own, her father and I would be totally supportive but the problem is she is not ready and I don't know how long before she is. She looks "normal" and she is pretty and if she leaves we can't protect her from people who might take advantage of her financially, emotionally or sexually and we are terrified. We thought about guardianship but we don't want to take away her rights because one day she will be able to better handle things. With kids at school continue to tell her "you're 18, you don't have to listen to them", it makes it difficult for us because she is rebelling and trying to do whatever makes them happy because she thinks they are her friends. Forgive me but sometimes I feel like we have failed and I feel like giving up. Thank you for understanding and I will keep you all in my prayers.

I feel just like you. My daughter is 10 and is the joy of my heart. I have never smoked nor had a single alcoholic drink in my life but I too am in the same situation. I don't know how to get through most days without wondering what will happen to her in the future. I am so worried about who will care for my daughter should anything happen to me. I don't know what I did wrong. I did the vitamins, the doctor, and all of the right things. Still my daughter is not normal and I feel like it is my failure.

You are not a failure. My daughters are both mentally challenged. I did all of the "right things" when I was pregnant too. How did this happen? My girls are in their 40's now and I am still teaching them how to do things they should have learned years ago. I constantly worry what will happen to them when I'm gone. There is no one to look after them. They have no friends or family. Society has more or less thumbed their noses at children like ours. Doctors have been of no benefit to me since they were very young. I wasted my time trying to get help for them as nothing ever proved successful. I wish you luck in the future because I have had to do this on my own (their father hated them).

I competely understand what your going thru. My daughter is 26 yrs old now. Im 55 years old. Recently she decided she didnt want anything to do with me. She was visiting her father and Cindy, wife its his 2nd marriage. So of course her Dead Beat Dad and his wife Cindy decided to help my daughter out by encouraging her anger and to support her in anyway. Well its been two and a half months now since I've seen my daughter. When I call she either doesn't want to talk to me or if we do speak its like a minute or two long. She cries and tells me No, I'm staying with Dad. We are suppose to be moving out of state to South Carolina, where the rest of our family is living. We were almost finished packing up everything and had one week before escrow was to close. When we got at call from our realtor that the buyers dropped out of the deal. We were so up set. So asking my daughter if she was going to still move with us to SC she told me no and was upset and she hung up on me. I am positive that my ex and his wife are after the SSI benefits payment each month has given both of them the motivation to push this and have a serious amount of extra income into there home. Which now I am left completely in disbelief and shock by how those two turned my daughter against me and so quickly. My heart is torn from my chest. Im so besides myself. My daughter has only been away from me for one week only. Ever!!!! We have been together since I gave birth to her 26 yrs ago. Also now ive got bills that I cant pay. My ex has completely destroyed my my life and made my life here on earth almost unbearable. My other two children older than my youngest 26 yr old. So I am alone now, for the first time in my life. Nevermind, what garbage they are filling my beautiful daughters mind with. If it weren't for my belief on JESUS and that he is here with me always and with my daughter, that he is making sure she is safe and out of any real danger. I'd be out of my mind by now. And trusting in Him is all I've got left. Praise Jesus !! Well, thats my story up today's date. 11/2014. I wish you all the best with your daughter. All you can do is love them. Give all you can to our children, teach them the best you can. Get them out there in the world , let them explore and make there own mind up about some things. Even if you disagree they have there own ideas and likes and dislikes. May God be with the two of you from today on and every day after today.. Go with God!!!!
Thanks for listening. My name is SusieC.

You just described my daughters life to a tee!! We are living with the same struggle, a child who appears normal, but is not. She too is Labeled mentally retarted. After 10 years of genetic tests we have no answers. She is also in the TMH class and will most likely live with us the rest of her life. Our son is younger and off the charts smart with no issues. I struggle with the burden he may have in the future if something happened to my husband and I. We are blessed to have her, but scared for the future. Thanks for sharing your story.

I want to tell you I am a perfectly able man and I fell so in love with a mentally handicapped girl who was caught in a n explosion as a baby and is permanently in a wheel chair and can barely tlk
I see thrue everything and see her for how beautifull and sweet and loving she really is I wouldn't change her for the world I want to let you know your wrong and there is hope for her .
Vincent snow-

I pray my beautiful soul fun daughter will find a jewel like you. You give me hope.

That's awesome and I appreciate hearing that. I am like you, but a woman that's perfectly abled. I have a friend that was diagnosed with mental retardation, but to me and everybody else it's very mild. He has his moments, but he walks in trying to be as normal as he can be. I do love him and he asked me to marry him. He's been wonderful to me and my children. So, I'm so happy to hear your story. God Bless You!!!!

Vincent, this gives me hope and extreme fear at the same time.

I just want to cry for you,,,,
My husbands daughter, 24 is the same age as my daughter,,,,she is severely autistic or mentally handicapped,,,,,my daughter is normal, outgoing, etc,,,,the pain I have seen in my husband is unmentionable,,,,the story is much deeper, and even UN thinkable in my mind,,,,just love her, every moment, for who she is,,,,,she is a gift to you,,,,and always will be your special little gift from God,,,,no other words can describe who she is,,,except for an incredible special gift,,,,

My daughter is 7 years old, she looks completely normal and have met all of her physical milestones thus far, has always been very independent as far as dressing herself, taking her own bathes, and changing her clothes. However I have deep concerns with her cognitive , and social milestones. She was diagnosed with a chromosome abnormality in utero by an amnio that my doctor recommended at 6 months gestation. But because the chromosome abmnormality was so rare the genetist could not give me what her outcome would be, but on the probable list was mild to severe mental retardation. Today, my daughter is a very well mannered child, polite, sweet, and helpful. But she has been struggling academically since kindergarten and still reads at a first grade level in the second grade. She is very shy, and often times cannot carry a conversation with other kids her age. She is working with a speech therapist at school, while she can communicate very effectively what she wants, and do not want, she cannot have a two way dialog like other peers her age. I have not got her tested to confirm if she is mentally retarded, but my gut is telling me something is off. I just met with her teachers and they recommended to have her tested, but my husband wants to work with her more before we attempt to put her on an IEP. I have raised two other children, and she is having a difficult time remembering simple math facts that should come very easy for her, and cannot recite the details of a book that she has read. It is heartbreaking to know that my daughter may be considered disabled and how cruel the world may be to her as she grows. I am praying that my gut instinct is wrong.

oh daughter has just been diagnosed as mentally retarded. It is so hard she acts like she is 3 years old. I need some help with what the school ard meetings. I don't really know what she is going to need. All of the posts on here I can relate. she had a friend spend the night and her friend didn't understand why she acted the way she did.

I can relate to your story very much as I was perceived as being mentally retarded since I was a baby. Of course I look back now and see it was because I was born with cross eyes and it affected my coordination. Yet still that label stuck on me and no matter how hard I try I can't get my brain to reject it. And it turned out to affect my whole life. I don't think I even have a grade school education in sciences, and history. I learned algebra but can't use it in real life- just know it theoretically like a puzzle. I know how to write but I write solely from instinct not from conscious and deliberate use of grammar. I get taken advantage of easily by others and I am in a job where all I do is cut and paste spreadsheets all day long and nothing else. I am finishing a master's degree program right now but nothing qualified me to be there- I am there because now days education is open enrollment- they will take your money if you are willing to give it. It is surreal to be there as I know me being there is like a defense against the label put on me as a child that affected my life in such a terrible way. I can really sympathize with you and especially your child. I hope you have had any and all physical problems ruled out that could be interfering with her intellectual development.

My daughter is 9 and mildly retarded. She is very delayed when compared to other 4th graders her age. She knows some sight words, thanks to her special ed teacher but she reads like on kinder level. I'm really wanted to help her learn. Does anyone have any experience or success in teaching their children? Can you please help me and give me some pointers, the strategies or programs you used?

You sound like a very nice person. Too bad the world wasnt filled with such kind people.

My Sister Is 41 And We Finally Understand That She Is Mentally Retarded. She Is Easily Taken Advantage Of Both Sexually And Finacially. ShE Is The Mother Of Three Children And Has Done Exceptionally Well With Them But Thats Mostly Due To Our Mothers Constant Attention. She Became Addicted To The Party Scene When She tagged Along With Our Two Other Sisters In Their LaTe Teens And Early Twenties And Has Used Alcohol To Boost Her Confidance. Unfortunately It Makes Her Mean And Aggressive, Where Normally She Is Painfully Shy And Quiet. Since April I Have Her Children, Who Were Finally Taken Into State Custody. It Is The Most Tragic Situation. Thank Goodness You Parents Are Having The Children Diagnosed Early So ThaT You Can Get All The Help Available! My Sister Was NOt Schooled Because Our Parents Were Polygamists.

For the last 3 yrs I have been trying to get help for my daughter, who is now 6, and find out what is wrong with her. She has trouble learning, speaking, understanding, is hyper, at times has sudden outbursts of anger and wasn't potty trained until she was 5 1/2. She has been receiving some special ed from the school such as cognitive training and speech therapy since she was age 3. When she was in kindergarten I had asked that she be put in a special ed class so that she could receive more 1 on 1 help. I met with the head of the special ed department from the school board along with 2 of my daughters other teachers and was told that they did not want to put her in that class because it was restrictive and she wasn't disabled enough to be there. I was further informed that I was being over protective and she was a kid, she would grow out of it.
She has seen a Neurologist, Psychiatrist, family doctor and a Psychologist. She has also had an MRI that came back normal so the Neurologist diagnosed her with Encephalopathy with Autistic Characteristics. The Psychiatrist has diagnosed her with ADHD. She recently had a Psychological Evaluation and IQ test. I thought I was ready and prepared to hear his results but I was very wrong. He said she is mildly retarded, will never get better, no medication will help, her mind is that of a 4 yr old, she will never go to college, the left side of her brain does not work properly and her brain might be having seizures.
I have spent the last 3 days crying because I don't know what else to do, I don't have that much family support and I really feel alone. Her father has never been in the picture and has never seen her. It is so hard to have to be so strong all the time. I always thought I would be able to find someone to help her and to be told there was no help was devastating.
Where do I go from here? How do I find out if there are any support groups in my area?

My heart goes out to you. I know how you feel. Raising a special needs child is like living in a foreign country and not understanding the language or the customs. You will learn to navigate your own way over the years. There should be early intervention programs that you can access. United cerebral palsy offers a lot of different things, the iq test doesn\'t mean she can\'t learn so stay positive and always fight for what you think she needs because you know her best! I had a very hard time with support groups. Most are specific to autism or other conditions. I am here and I understand. Hang in there. It takes a special mom to raise a special kid. You have been chosen for a reason. Love her as only you can. Take care!

Don\'t let the diagnosis scare you. There is help out there! Don\'t let anyone take your hope. There are people who understand and know what you\'re going through. Finding a group might be difficult because most of them like Tammyburling said are so specific. Reading the posts from this forum has been a big help. It makes me feel like we\'re not alone. Our mental health department has a network for parents of people with disabilities so that may be an option. Getting to know the parents of the other kids in the resource room was very helpful.
It is very difficult to fight when no one seems to be listening. You can do it though! God has given you this special child because he knew you and only you would love and protect her like she deserves. My thoughts and prayers are with you!

My daughter is 15 and has moderate MR, moderate/severe hearing loss and receptive/expressive language disorder. She has enough going on to know she wants what everyone else has like a drivers license, babies, college and a home of her own. I don't know what to do. She is mentally about 7 right now and will probably never get beyond 8-9. I had to explain to her that she couldn't have a license and even gave her the manual to read but she couldn't. She didn't talk to me for 3 days. She wants to be a teacher but can barely read and there's no way she could get into college. She will have a certificate instead of a high school diploma. She spends almost all school day in special ed. The school just pushes her through the grades without her able to understand the work. It took until 2 years ago to get the doctors and teachers to understand that something was wrong. Up until then they assured me she was just delayed and would catch up. I don't know what to do about her future. I want her to be everything she dreams of, I just don't know if it's reality. Any thoughts?

My step daughter is 6 years old. She does not understand much of anything she is told or asked. She attended preschool and has to repeat Kinder this year. She can count to 12 and does not recognize her letters but is able to write them in order but is unable to recognize 23 of them alone. Numbers are the same problem. She still does not bathe herself or even try to. Everyday is just like the one before, no progress in over 2 years and I don't know how to help her.

Talk to her physician, and her school about your concerns. Don\'t give up! I was told countless times in the early years that there is nothing wrong with my daughter and she would grow out of it. Well, 12 years later, she didn\'t grow out of it! You are her best advocate. The earlier she can get assistance, the better she will be.

Reading this brought me to tears. I have a three year old who was just diagnosed with mild mental retardation and expressive language disorder. She had an eventful birth very tramatic, she had two major holes in her heart and got open heart surgery at four months old. I noticed right away she did not reach milestones in all areas of development my doctor kept saying oh wait til she catches up. I felt like no one was listening to me finally another doc i took her to said global developmental delay n she was able to get pt,ot and early intervention program. Now were still going back n forth to specialist, genetisist, neurologist etc. And she has made alot of progress but im really scared for her future. It really worries me that shes not like other kids and will most likely not be able to live 100 percent independently. Lately i know i am not in a good place all i do is cry:( i know imblessed to have this angel in my life but its been really hard on me to even say my y daughter is special needs. I hope i can be stronger soon. How did you cope

Hi I have a lot of concerns too for my daughter and have just learnt that she is not growing up like other kids, global delays showing same symptoms the one you have mentioned! I'm weeping and weeping till no end. Can I personally talk to you

I have a daughter who us 14 and developmentaly disabled she is starting to see that she's different ..we never treated her different and never seen the need to explain it to her...she has a sister who is 6 and reads and does math better than her...this is upsetting do I explain to her about her disability without breaking her heart? This is tearing me apart

i could remember being on the bus one day and my son displays austism like behavior, so he's rocking back and forth and making these noises and that was not the first time and I admit I use to try to keep him quiet but this time I DID NOT CARE!!! I didn't care about what my son was doing, What is normal anyway? is what I said to myself. He wasn't harming anyone and he's grown out of it now, well he does a little bit, but still I don't care cause that's him and I love him.

Hi my name is christal, I am a parent of three children,well, two young adults and a teenager. My daughter is 25 yrs. old and my two sons are 21 and 17yrs. old. Both my daughter and 17 year old son where diagnosised with FragileX Syndrome, they were diagnosised about 11 yrs. ago. My 21 yr. old son does not have it but he did have ADHD, I was constantly up at his schools every day when he was in elementary school and middle school and about half the time when he was in high school. Today my daughter has a parttime job working at a supermarket and she's had it for five years now. She catches a bus and trolley to get to work. She can go quite a distance, she goes shopping whether it's for a bite to eat or something miscellaneous she wants. My son needs to be supervisied and right now I am the only one doing so at home. What i find fustrating and scary to me is when we are out in public and he has to use the bathroom. At school he is in a Life Skills class, special education class and he has a TSS worker who does an excellent job with him. He also has a Behavior Specialist that visits him at home once a week. And those are the services that I have for him so far, he does get funds for summer camp, social & recreational activities, or if i need someone to watch him, everything is paid out of there. I never realized how good I had it. This is about the third time that i spoke about my childs. In the beginning I was depending on others to take care of my childrens needs whether it was the health or education professionals. I was in denial and I was not doing so good when i had my first child,she was diagnosised at first with just having mild retardation, she was four and we were living in a shelter. In the beginning I didn't know nothing and I didn't want to know. I didn't want to talk about it to anyone. I guess sometime later I after i had my third child, I started reading about fragileX and it become overhelming and I had to put it down. Later on my cousin who was married had a son that was born with fragileX syndrome and unlike me she went to work: reading, finding resources, calling me on the phone. At first before she had children she had a negative notion as to what made my childre that way. I am sorry, I am go on and on. I guess if anyone wants to chat with me and I can be of some help email me at cmgraves42@gmail, because I just happen to have stumbled across this blog and I don't know if I will be back.

I was told that early puberty is another sign of a mitochondrial disorder. We just got back from seeing Dr. John Shoffner in Atlanta and my daughter had a muscle biopsy and lumbar puncture. They will be doing extensive testing and we get the results in 6-8 wks. We are very hopeful that we will finally have a concrete diagnosis. Please look it up and see if it may apply to your daughter. While i am told there is still no cure, there are treatment options that are helping based on the Dx. For me, I think knowing the cause will help me focus on the treatment and let go of some of the guilt that I somehow caused this. I feel for you and hope you get the answers you need as well. Please keep in touch.

Very true.....I feel for you.....and you are a strong mom

I forgot to mention that she started early puberty and had her first menstrual at the age of 9 1/2 and her breasts grew overnight at the age of 10. So, I have this beautiful daughter who has a developed body and who is innocent with the same mentality as her 7 yr old sister. I just want to keep her sheltered from the world but at the same time I just wish that there was something that I could do to help her be "normal" :(

Omg, this is exactly what I've been through with my daughter who is now almost 15. She is a twin and both my daughters were born premature. I always knew that my daughter was a bit behind from her twin but it wasn't till she turned 2 that I really knew something was wrong. She wasn't talking or walking like her twin so I had her tested. She was 2 yrs old and was developmentally delayed is what I was told and started receiving OT and PT. She started receiving special ed and speech therapy once she started kinder. She wet the bed till she was 11. She has been tested my several doctors and finally got diagnosed with MR when she was 11. Till this day I have to help her get dress for fear of walking outside without her bra put on properly or her hair in dissaray. My 7 yr old daughter writes better than my daughter with MR. She has anger problems at times and can be so emotional the next. Her school says that she is at the level of second grader. I had one school psychiatrist tell me that my daughter was going to literally be moved up each grade regardless of her work because that is how the school systems works. I was sad and hurt and thought "wow" I want so much more for my daughter! I want help for her but all she gets is help from special ed at school and she can see a therapist for her outbursts. I'm just not content with her diagnosis. A friend of mine even told me to google Aspergers to see if that better fit her symptoms. I'm just at my wits end and wish there was something I can do. Sorry, for my rambling!

You weren't rambling!
My sister (19 years old) is diagnosed with moderate MR. She is in the 11 grade (they let her stay in school until age 22, and her last year will be her senior year). She has always been moved up a grade, even if she hasn't met the required goals for that learning skill. She is put in a class with others like her, and multiple teachers are in the room helping the children. She is taught not as a class, but as an individual. They work with the students individually because some kids are on diffrent learning levels and have to be taught diffrently. My main concern is, charlie is a mimick. When she sees malicious behavior, she becomes malicious. Her being in a public school has made her more aggressive because she watches other children getting aggressive and getting their way by doing so. Just be careful of her surroundings, and they pay attention to more things than you think! I hope this helps. This is from my personal expierence from living with my sister. I'm 17 years old.

You are a very intelligent and caring young lady! It sounds like you may have a future in this field :) Your sister is lucky to have you!

I am a step mother to my mentally retarded step daughter that is 15 with an IQ of 46 that i raise. I appreciate all of the posts. I do struggle as the step parent and at times get angry at her mother who has a carefree life while I am sacrificing so much for her daughter. She is a capable lady! Just selfish! It has been a challenge personally and a challenge to my marriage. It helps to hear how others cope. For the life of me I can not understand how a mother could not be the one raising their child, especially one so innocent and needing a mothers love the most. I commend you mothers meeting g the challenge.

It will be ok, you are not alone. Stay strong and be there for her. I don't believe mental retardation or developmental delay is a diagnosis. I think it is a symptom of another condition. My daughter is 11 now and I am taking her to a physician in Atlanta, Dr. Schoffner, in December to be tested for Mitochondrial disorder. I suggest you look it up and see if it applies at all. It is new testing and they are linking it to all kinds of condititions.

I also have a daughter who is mentally retarded or intellectually disabled with an IQ of 61. She is currently sixteen-years-old and this is the year that she has noticed that she is different from her peers. She is in a private special ed school so you would think that those peers would be more accepting. However, within the past few years the gap between her and her special ed peers has widened. Her best friend is 9 and 14. I think the 14 year-old hangs out with her out of kindness as they have been friends for almost ten years. But, obviously their similar interests are few.
My daughter had IQ testing in school at the age of 6 and at that time her IQ was 67. They told me she was Developmentally Delayed. I had no idea this meant mentally retarded and that it could not be "fixed". My husband and I have spent thousand upon thousands of dollars taking her to all sorts of various doctors trying to find out what was wrong and how to fix it. She was diagnosed again in 2006 (when she was 10) by another outside Neuro-psych who said she had ODD, MOod Disorder, ADHD, and Mild Mental Retardation with an IQ of 70. Again, I could not believe it. I mean she was on some crazy meds that were making her tired, so this must be the reason why she scored to low.
Fast forward to this year 2012 - The school had her three year domain meeting in conjunction with her annual IEP. They did a full Adult IQ test, because of her age and she scored 61. It's taken me 16 years to come to terms. 16 years and I don't think I'm there yet. In the fall the school district will be moving her to a Life Skills Program where she can learn daily living skills: how to ride a bus, make change at the store, balance a checkbook. Did I mention she can't do simple math? I am sick to my stomach and can only keep telling myself over and over again that it is not my fault. I believe it may have happened in the hospital as the labor was well over 12 hours and pushing was 4 hours. She was distressed during the labor process. I guess they should have performed a C-Section. Maybe none of this would have happened.
I try to see the good in all of this, but it is really hard. I kept thinking that she would "catch-up". It's only now that she is sixteen that I see she never will. I don't even know if she will ever drive a car or get married. I am almost 47 and my husband 48. This has taken a tremendous toll on our lives, emotionally and financially.

Nothing you did caused your child's problems. My son was born 4 months early and I thought it was my fault for a long time , but after DNA testing I found out his 15th allele was only half formed. He has an IQ of about 75 and is an 11 year old that looks and acts like he's 8. I am resigned to the fact that he will always live with me, but what will I do with a full grown male that has the maturity of an 8 year old?

It hurts my mother to know her daughter won't be able to get married or have a job or have babies, also. My sister is diagnosed with moderate MR. She is 19 and has the mind of a 3 year old. It's difficult to handle her ways, but mom has been doing the best she can. She knows that she will always have to take care of my sister for the rest of her life. It hurts me too, knowing that my mom won't be able to go out with friends and have a normal life due to the responsibilities of taking care of my sister and making sure she's safe. You're not the only one! If you need advice, you can message me and i'll even have my mom talk to you if you'd like to hear her insight, also.

I was just wondering for so many answers before I come here... I am an aunt of 3 year old girl who has intelleactual disability. I still don't believe what doctor told us a week before.She looks like a very normal child to us but we were not aware that her slow development will be a part of intelleactual disability.

Can any body tell me the reason of this..?? Din't we give her proper care during the time of her birth or after...?? I don't know how will people treat her..?? How much she will have to suffer to live in this cruel world..??

My husband and I have 4 healthy children and we recently adopted a special needs child from China. She has 11, never been to school and recently diagnosed with 2 chromosomal disorders. I related most to the mom who adopted and has no support. I could not do this without support. I can only do this with the strength of Christ and the hope that her life will be different because we chose to trust God. What you did in adopting 3 kids was amazing, but KNOWING how hard 1 child with problems can be, I can't imagine 3. You sound like you are doing all the right things to help you n your children. Hang in there, keep writing posts n seeking help n support.....blessings will come....

my daughther is also devlopmentally delayed to she is only 6 and i can really understand what you are saying love and best wishes

Casadee is 11 now too. She started having seizures in the right side of her brain this year and now takes anti-seizure medication. Other than that, there has been no new diagnosis. Her Neurologist suspects a Mitochondrial disorder but the best way to diagnose is with a fresh muscle biopsy and her insurance will not approve it as the provider is out of state. She continues to have behavioral problems and we struggle with taking her outside of her "comfort zone". I recently met with her teacher about my concerns and she suggested creating a chart system to help her stay on task and to teach responsibility and cause and effect. She learns much better with visual cues so we are optomistic. It will include pictures of her daily activities so she can see what she needs to do. When it is performed, she will move the picture on the chart. For example, at bedtime we really struggle to get her to complete tasks. The chart will show the activities needing to be done every night such as doing homework, eating dinner, taking a bath, getting pajamas on, picking out clothes for next day, brushing her teeth, and going to bed. When she successfully completes all the tasks (or at least most of them) she gets a reward at the end of the week. I'm not done developing it yet so we will have to see how it works and if it needs adjusting:) It's tough because both myself and my husband work full time. We can only do what we can do. I'm so grateful for everyones responses and sharing your own stories and struggles. I don't want you to think that raising my daughter is all bad because it's not. The blessings far outweigh the struggles but it's the struggles that I've chosen to share on this site so that we might help each other.

My daughter is 11 and has Mr. Your story mirrors ours. I know exactly how you feel. It is very hard. I love my daughter very much too!

i have a sister same as your DAUGHTER but lately she's throwing tantrums...all of us went for abroad to work and left her with my cousin who is also kind and good but she kept on bullying my cousin...i am thinking of going back home but how can we continue supporting her if i will not other sisters have their own family life all that's left is me and her and recently i got married my husband is understanding but has no job as of the moment so i have no choice but to work here...what am i suppose to do? thanks

Trust me I understand my daughter is now 19 and I have had the same experience of people not understanding her behaviors because she looks normal. I mean she doesn't have the characteristics of a child with downs syndrome. Sometimes I've wondered if people would be more understanding and not so quick to judge if my daugher did look mentally retarded. <br />
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I was never given a formal diagnoses either and for the longest time I was under the notion that my daugher was developmentally delayed not knowing that developmentally delayed was just a new term for mentally retarded. I think the first time I saw mentally retarded was on one of her schools Individual Development Plan (IDP). I was numbed and probably in shock. The two terms had totally different meanings to me. Finding out that she was mentally retarded ended my hope of her ever being normal. While Developmentally Delayed meant she was just developing really slowly but developing just the same. Dont know if that makes any sense.

We need help. I dont know where to start. My neice NEEDS to be in a group enviroment to get help but I cant find any groups. We live in southern california

Thanks for sharing your story. I am not the mother of a 16 year old mentally challenged girl, but the aunt and I have seen in the last few years she has not progressed at all. It is like she is frozen in time. Her parents continue to act "as is" all is well, main streaming her into programs, this just frustrates her and she throws massive fits, hair pulling, biting, hitting, swearing. She has no friends, she doesn't relate to anyone, she losses focus and interest easily. The people in her world our her two 83 year old elderly grandmothers, her aunts and uncles - who spend time with her but not the time she would like, her sister who at this time in her life doesn't think it is cool to have a mentally challenged sister and her parents. Her parents know that her future is going to be a tough one and they are getting on in age also 56 and 59. At the moment, they the parents, don't have a support system outside of the people mentioned, and those people are beginning to feel suffacated by the attention she requires. She will never fall in love, go on a first date, marry, have children, work etc. At the moment she is in high school - no child left behind, so at least she is getting something, but she retains nothing. At least she isn't violent at school just basically to her mother. She repeats herself all the time, I want to go home, I want to go swimming, I don't want to go swimming, how is your car, how is the dog, I want to go home, where are we going, on and on. I don't know where I am going with this, but I just wish there were some kind of light at the end of the tunnel for her parents, they are so stressed out, I can see how families could split up over this. We live in a pretty rural area and services outside of the school are limited. When she was younger she was more manageable and it was cute, but at 16 living in the body of a 6 year old (if that) it isn't cute anymore.

I agree that it seems to be getting harder as my daughter gets older. I can definitely relate to the repeating herself!! Omg, my daughter does that constantly! I guess it just depends on where I am emotionally at the time as to how well I deal with it. I rely on the strength of my God and of my family and friends to carry me through and I try to focus on the joy and everything that is good and precious about my daughter. I laugh a lot! I know it's hard but she would not be in your life and in your sister's life if it was not meant to be. They should definitely be looking at independent living programs or other services that are available for when she turns 18 as there are usually more options then. They will want to do that now as there are probably wait lists for assistance. They will also need to get guardianship when she turns 18 as that doesn't happen automatically. Sorry, but I would want to know these things if it were me:) Her parents may be overwhelmed and may need your help and support with this. It sounds like you are a very caring Aunt and I'm sure they are appreciative of your support. God bless you!

My daughter recently diagnosed Autism and Mental Retardation by Miss Tahreem ,as my daughter didn't talk or walk on time,Now she is 5 and half year old,present status she can walk by holding any thing ,all the time crowling ,she need to permanent schooling please help in this regard.

Where do you live? They have a lot of programs in the public schools that should be able to help like an Autism or intellectually impaired program. Also see if there is a United Cerebral Palsy center anywhere near you as they offer a lot of assistance. Check with the doctor also to see what resources they have for early intervention or therapy services.

I feel all of your pain too. My daughter is 11 and is mildly intellectually disabled with an IQ of 57. I too am struggling with a lot of the issues previously mentioned. She is the eldest of my 5 children with my youngest just 3 weeks old and is totally obsessed with the baby. I have tried to involve her as I have with the other children too but I'm constantly on edge as she sneaks in the bedroom and picks the baby up and wanders around with her, waking her up and it's really not safe. I feel like in a detective at the moment always figuring out what she has been up to like raiding the cupboards and eating all the chocolate, taking her younger sisters money box, stealing from school, she compulsively lies and it's terrible but I can't take her word for anything. I really hate the way I feel about her ATM as I can't connect with her and find I don't even want to be around her... I'm her mum and I really wish I could do all those things that other mums get to do with there daughters. It makes me so sad :(<br />
We are very lucky that she is now in a great special needs school and her confidence is growing by the day as well as finally making friends with children with there own issues.<br />
She was struggling at mainstream last year and was being picked on badly. I'm glad she is somewhere that celebrates everyone's differences instead of using it as a target.<br />
Having no specific diagnosis of a disorder or syndrome makes it hard especially when ppl ask why she does things or behaves a certain way.<br />
I hope my daughter can one day live independently and be apart of society although I worry for her and us. She doesn't see the point of things like wearing appropriate clothing depending on the weather or personal hygiene or showering so I guess until she somehow out grows it or I manage to help teach her the importance it's all up to me.. But it is exhausting to say the least but if I don't advocate for her then who will... Thanks for letting me vent

I feel all of your pain too. My daughter is 11 and is mildly intellectually disabled with an IQ of 57. I too am struggling with a lot of the issues previously mentioned. She is the eldest of my 5 children with my youngest just 3 weeks old and is totally obsessed with the baby. I have tried to involve her as I have with the other children too but I'm constantly on edge as she sneaks in the bedroom and picks the baby up and wanders around with her, waking her up and it's really not safe. I feel like in a detective at the moment always figuring out what she has been up to like raiding the cupboards and eating all the chocolate, taking her younger sisters money box, stealing from school, she compulsively lies and it's terrible but I can't take her word for anything. I really hate the way I feel about her ATM as I can't connect with her and find I don't even want to be around her... I'm her mum and I really wish I could do all those things that other mums get to do with there daughters. It makes me so sad :(<br />
We are very lucky that she is now in a great special needs school and her confidence is growing by the day as well as finally making friends with children with there own issues.<br />
She was struggling at mainstream last year and was being picked on badly. I'm glad she is somewhere that celebrates everyone's differences instead of using it as a target.<br />
Having no specific diagnosis of a disorder or syndrome makes it hard especially when ppl ask why she does things or behaves a certain way.<br />
I hope my daughter can one day live independently and be apart of society although I worry for her and us. She doesn't see the point of things like wearing appropriate clothing depending on the weather or personal hygiene or showering so I guess until she somehow out grows it or I manage to help teach her the importance it's all up to me.. But it is exhausting to say the least but if I don't advocate for her then who will... Thanks for letting me vent

You guys make me feel so much better! Lol. Hang in there, maybe we can all help each other through the growing pains:)

My daughter is 12 and MR. She looks normal and is the eldest of my three adopted kids. They are all siblings. I got them 5 years ago. She is very kind and cooperative and like all of you, I live in fear of the world eating her up alive. So many people say that her MR status seems harsh because she has good coping skills. However she is preparing for 6th grade next year and is unable to write a complete coherent sentence on her own. She struggles with simple tasks sometimes and needs constant praise and feedback. We struggle over tasks like getting her to wear clean underwear, sometimes I want to bang my head against the wall. I live in fear of her puberty. She has a speech disorder that has greatly improved over the years and is now only moderately noticeable. I worry how this child who can not do simple math will buy her groceries when she is grown in just a few short years. I worry what my life will look like too. My husband who adopted the children with me left us two years ago and I am raising all three alone, two who are special needs (son is RAD), and there are many nights I cry myself to sleep and struggle to get out of bed in the morning. We have therapists, and neurologists, and psychiatrists. However none are for me, I spend on average 2-4 days a week in doctors offices. Some days I feel so alone. People just expect you to shoulder on, like I'm superman and can't break. Raising children with special needs is the hardest thing I've ever done. The other day I sobbed on the phone to a Mom who also has a SN child, this is a lady I have met only twice before. It's just nice to know there are others who know how hard it can be. To know you are not alone in a situation which is so isolating, it's the only comfort I get most days. My children are medicated and thank God for the meds. All three are ADHD and my son takes Respidol for his rages. No shame in medicating, the kids are happier when they have better control over themselves. Thanks for letting me share, it helps just letting others know how hard it is.

I agree that we need each other! I consider myself very social and have a lot of people in my life who care about me but none of them truly understand what the day-to-day reality of raising a special needs child is like. It never stops. There are rarely "time-outs" for Mommy. That doesn't mean I don't love my daughter, I love her more than anything, it's just hard. I'm so glad I wrote my story and did not expect the response that I have received. It helps to read your stories and know I am not alone in my feelings and their are othes who do understand. Sometimes I wish my daughter had something that I could put a name to like autism or down syndome because at least they have support groups and clubs and foundations. The only resources I have found are mostly for adults with MR. Most of the kids my daughter is associated with have some diagnosis which seperates them fom us. I think the hardest part for me is the not knowing if it was something that I did or why she is this way. I keep looking for a medical diagnosis and the doctors keep telling me there is no abnormalities. Right now I'm trying to get her tested for Mitochondrial disorders but having to fight my insurance company for approval. Somtimes I just don't know if I'm fighting a losing battle and if I just need to give up and just love her and accept that this is it. I don't know.

My step daughter is living with us full time now, because her mother doesn't want to see her anymore. Erin was born a normal child, but developed meningitis at 6mos old and is now mentally retarded and deaf. She is 18 yrs old with an IQ level of 30, so she is like a 3 year old. She slams doors, beats herself, grinds her teeth, screams and has OCD. I can't see to find a nanny that is not afraid of her, she is a big girl and violent at times. I'm really not sure who to contact for help, I need some relief if anyone has any suggestions!!<br />
Thanks so much

We did have some behavioral problems for a little while but then my daughter started taking medication which has really helped. She takes Intuniv which is a non-stimulant. I was hesitant to put her on medication at first but the way the neurologist explained it is if she had diabetes, she would need to take insulin. She needs this medication to be able to function in society. She is much calmer now but not "drugged". It works for us. I think her hitting and acting out is out of frustration from not being able to communicate. Try to find some other outlet of communication. Maybe behavioral therapy. My daughter is almost 11 now and I sometimes wonder what I'm going to do when she gets older because she is always going to need supervision. I would definitely speak to a developmental specialist or neurologist to see if there is a medication that will help. Good luck! Keep me posted.

All you guys stories are touching. I'm going through the same thing. I have a 10 year old daughter mental disable moderate that is how the school lable her. I cry many of nights because I worry about her future. I do not want anyone to take advantage of her. She is beautiful and maturing so fast and people are cruel. We have to patience to teach them little at a time. She not reading but she can get dress and take care of hyigene by herself. Sometimes I wonder what happen alone the way. You guys stories help me today, because I feel alone too.

There are many programs available. Contact local agencies for disability, Developmental programs and United Cerebral Palsy is a good resource for younger chilldren. The physician should have referred you to local resources but you can look online. Depending on her age, she can get therapy and early intervention services. If she is in school, her school should be addressing the needs. I would also suggest getting a neurologist and/or a geneticist to determine if there is a underlying cause. 1 thing I know for sure is :it's not your fault!" you didn't do anything to make your daughter this way. There is a reason God gave you this child. Love her and teach her and take care of her the best you can. There is a writing called "Welcome to Holland". google it on-line and you will understand. God bless you <3

I just found out less than two hours ago that my beautiful "normal" looking daughter has Mental Retardation. Its alot to take in I honestly thought that she was just a little bit behind and maybe had a learning disability,but I was never expecting this.I feel like its my fault like I did something wrong. MY pregnacy went great she was healthy as can be. There is still alot I need to learn about it Im exactly sure what it even is to be honest....everything is really confusing right now just before 2 hours ago life was normal,crazy how much life can change in just 2 hours....So is that true what I read on the prevous post? She wont mature mentally more than 8 years old? That just floored me when I read that.Are there any websites that any of you would recommend so I can read up on it?

She will have a life don't worry I have a sister who is handicap she looks like she's 8yrs old but she is 26.. She works with kids like her. Their are many programs out their you can put her in.. Don't feel bad they understand quit a bit even if you don't see it they do.. Doctors told my mom she wasn't going to be able to walk or talk basically they told her she was going to be confined in a wheel chair but at two she learned to walk and then later she began talking. And I'm younger then her I'm 22 I love her she can be a pain but what sister isn't right.. She knows she's older then me. And she has many boyfriends believe it or not she meets them at her work. She has a cell phone who she call us on and her friends. Yes it's hard bc they need more attention but don't feel bad you can teach her so many things It will just take time I love my sister so do my two nephews and my son bc she plays with them they stick up for her.. But also treat her like theirs nothing wrong..

Aries, your post gave me hope. I found out almost a year ago my daughter is ID. She has an IQ between 60-70. The doctors say emotionally she will always be 8 years old. I worry about her future and what happens when I'm gone. Seeing a positive post about your sister working with kids like herself made me cry. Its so easy to think the worst about her future and its terrifying not knowing how everything will work turn out. Just wanted to say thank you.

This story sounds like mines,the diference is I never got what my daughter needs. I am still not getting getting the help she needs, it is like no body cares about her but me.Now that she is twenty-four.I am very tired and burned out,I don't no witch way to turn.It is as if the systim want me to give my daughter away before they will give me the help she needs.I am standing in this all alone. It is good to see someone getting what they need for there child.May God continue blessing you

Thanks for the comments. It's nice to know I'm not alone. She is having a lot of issues with OCD type behaviors. It used to be just one or two things and now it is like 10 things that she obsesses about and when she is in it, there is no redirecting. She watches a show on Noggin every day called Fresh Beat Band and she uses chairs as the kids on the show. They all have to be in a line and touching just so. She also lines up her cars all facing the same direction and touching front to back. She wears the same outfit everyday which includes 4 shirts la<x>yered. She has to have her hair braided everyday in 8 seperate braids. The list continues. If she doesn't get one of these things she freaks out. She will ask for a drink and even though I say I'm getting it, she will continue to ask over and over again until I put it in her hand. It's sooo frustrating sometimes! I am looking into medication but I haven't found anything that works yet and she doesn't know how to swallow medication so it's hard. I just gave her medication tonight and I had to hold her down and practically force it down her throat. I don't know about anyone else's special needs child but she seems to have almost super human strength sometimes! I just pray everyday that God will give me what I need to care for this child.

My son has recently been diagnosed as mentally retarted, (it is hard to say that) and our school district has a special school they can go to. It isn't mainstream, but it is for other kids who have behavior problems, you may want to check into it because most of the time the district won't tell you about these programs you have to ask.

My daughter is also delayed her IQ score is a 53. She looks normal but is very friendly she thinks the whole world is going to be good to her. I have a very hard time teaching her stranger danger. I dont know if any of you have had these problems but sometimes I feel very overwhelmed. If not supervised properly she wonders off. In addition to that she is mainstreemed at school with special instruction, but is being teased by her peers for not understanding. In our school district we do not have special day schools so any suggestions would be GREAT . Thanks in advance

Wow! You're story sounds identical to mine. I have 3 daughters. My oldest and youngest have developed typically (advanced in many ways). My middle daughter developed much like your daughter. She was a beautiful, sweet baby always happy. She met all gross motor skills on time , but at 15 months I realized she was not talking or understanding language like my older daughter did. I knew something was not right. I had a perfect pregnancy and delivery so no medical explanation. My husband, a physician himself, told me to relax and that all kids develop at their own pace. By age 3 my husband's concerns increased with mine as she was still hardly speaking even with speech therapy. We good her to top neurologists, developmental pediatricians, genetic testing, etc. We were told she has ADHD and possibly intellectually disabled but only an IQ test would confirm. At 6 she was given an IQ test and adaptive test and scored very low 55 IQ. She was in special ed classes through public school and recently we moved her to a Montessori. She is now 7 years old and still not reading. She functions socially, emotionally, and academically like a 4 year old or younger. Also chased autistic diagnosis because of some of her behaviors but all docs said no she's way too social. Our daughter has come a long way, but I feel the same worries and heartbreak. She looks perfectly "normal" which makes her behaviors and interactions with her world so hard for others to understand. She doesn't "look" Intellectually disabled but I guess she is. I don't know what her future holds but I know she has a lot of people who love her and are working hard to make sure she gets as much help as she can to reach her potential, whatever that may be. I often feel so alone because none of my friends have a similar situation. Although my husband recognizes my daughter's special needs, he will never openly say my daughter is mentally handicapped. It's not an easy road that is for sure.

Your story hits home to me. Our youngest struggled with walking and talking. We had her in speech at age 3. This past year she was tested on every level. She has a mild intellectual disability. She wAs born with a defect of the mouth preventing her from pronouncing her sounds correctly. She has an IEP AND A WONDERFUL TEAM! She will be in a self contained special ed class next year. The team said she has this amazing ability to connect with others. However she is immature compared to her peers. She is the most amazing girl! Such a heart of gold! I have no one that can relate to me. So it was nice to ready your story. Best of luck!!!!

MRCP II MADE EASY is a book by a Harvard trained physician who is also a Member of the Royal College of Physicians London ( MRCP ). He is also a Member of the Royal College of Paediatrics of London ( MRCPCH ). My child was slow but he had symptoms identical to one which he described. It turned out that he has Wilson's disease and I asked the Family Physician if this could be the case. He was cynical but I was grateful that he did the serum caeruloplasmin level. It is written for the layman and he writes in the style of Crichton, House MD and Robin Cook. It interlaces medical facts with his case studies which makes it more like a novel than a large Tome. It saved Sarah and I will be forever grateful. The book is fascinating and my husband and 2 kids love it. I feel for you and I can never say that I know how one feels but I have been in the same boat but it is not all doom and gloom. Dont say that she will never be all those things we say as you don't need a high IQ to fall in love and who is to say that she will never find that special person who loves her. Life has its compensations and I know many wonderful men who love their wives despite their lack of intelligence. Francis Crick said once during his lecture in Google that the high rate of Autism in Silicon Valley is due to the marriage of 2 very high IQ people. He advised them to choose beauty instead of brains. Don't ever give up. All things are changeble and there may be a pot of gold at the end of your rainbow.