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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 45 Responses Aug 28, 2010

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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 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 my.....my 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 her...how 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 work...my 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