Mom, I Hate Having Down syndrome

down syndrome

“Mom, I hate having Down Syndrome.” My 14-year old daughter told me this the other day.

Honestly, I sat there for a minute because I didn’t know what to say. It wasn’t a big surprise to me because she had implied in the past that she wanted nothing to do with Down Syndrome.  Our family does not attend Down syndrome community gatherings and she does not participate in the special education program at her school because I finally gave up when she would no longer engage with the class or teachers.

But now, these feelings seem to have spread over into other areas of her life.  I’m afraid she feels like an outsider in both worlds… the disability world and the typical world.

Watching Something That Will Never Go Away

First, let me tell you that I am not a psychologist or licensed medical practitioner of any kind. Just a mom….watching her child struggle to figure out where she fits in and wishing more than ever that I understood how to approach this issue.  Unlike her two older sisters, I can’t tell her it is something she can change in herself or grow out of in the future.  The 47 chromosome thing is permanent and some how, some way, she will have to learn how to fit that extra chromosomal design into a world that is built for 46.

So why a blog post on this issue?

My Daughter In Preschool

My Daughter In her preschool years

I guess to share this concern with other parents because I’m sure my daughter is not the only one who feels this way. I also wanted to prepare younger parents for what the future may hold for their child and that they need to be aware.  Our daughter’s best friend with Downs  feels the same way as our daughter so I figure it must be somewhat common.

School is tough for kids no matter what but I think it is even more difficult for our teenagers with special needs because they are old enough and smart enough to figure it out.  The separation of abilities and communication skills has begun to really take hold during this time period too and it becomes very apparent that our teens struggle to keep up with the rest of the kids.

Solutions?

Well, I have thrust my daughter into the typical world even more to try to help her overcome her fears of being different.  This may seem harsh, but I’m not doing her any favors by helping her hide.  She is going to have to come to terms with it and find solutions or she is headed for a pretty dismal existence as an adult.

I’m safe about the choices we make and I do not put her in situations which could cause her harm.  But I did talk to the athletic director about her being the softball manager this spring and how we can open her eyes to being part of an organization at school and making friends.  Personally, I always thought she would be on the team which seems to be the going thing in the world of Down syndrome these days, but that would be too much for her to handle and I’ve learned to accept this.

The Challenge Of Making Friends

I also tell her daily that she is loved and that the kids at school really want to be her friend. Unfortunately, she has built up a wall around her that makes it difficult for the kids to get close to her. Ironic isn’t it?  They want to be friends and she pushes them away because she thinks she’s different.  The only positive part of it all is that it IS somewhat NORMAL teenage behavior.

Outside of the realization that this is a real problem for my child, I’m waiting for these dreadful middle school years to come to an end and I’m addressing each issue as it arises.

I would love for our parents who have already been there to share their stories and solutions. Stay strong, friends!

Valerie
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  • http://www.facebook.com/susan.siemers Susan Siemers

    Tearing up. You are brave, and strong. Sarah landed in the right family, with the right mom.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks Mom! You taught me to be a fighter for sure!

  • http://www.facebook.com/karen.nealmilaitis Karen Neal-Milaitis

    Well said. Teenage years are difficult, but that extra chromosome adds an extra component to those years. Good luck to you. She is blessed with a loving and caring mother and family which will help her along.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks Faye!

  • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

    Thank you.

  • http://www.facebook.com/bess.moore.9 Bess Moore

    God bless Sarah and her family. Valerie! You are a terrific Mom!

  • Scott

    I am not a parent but I am an adult with a disability whose parents did the same thing you are doing and I am eternally grateful for it. Keep fighting the good fight!

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thank you Scott! Glad you see the benefits of it as an adult. Hope she will feel the same some day.

  • Amy Allison

    I agree that self awareness of being different can be very difficult for people with Down syndrome to manage. We made a wonderful film to help peers, adults and people with Down syndrome understand and embrace the differences of having Ds while understanding that in all the ways that really matter, they are JUST LIKE YOU. You can watch the film online here: https://www.youtube.com/watch?v=5M–xOyGUX4 We are screening this film at elementary, middle and high schools across the country to help bridge the divide that can sometimes exist. Best wishes for your daughter as she comes to term with having Down syndrome. Kudos to you for pushing her out there in the world to find her way and try every good thing.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thank you for sharing this Amy! I think I may use this at my daughter’s own school to help the kids understand where Sarah is coming from.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Watched this – wonderful wonderful wonderful. Forwarded to our athletic director at Sarah’s middle school.

  • Em’s Mom

    Finally, I’m not alone! My daughter is 9 years old, has Down syndrome, is extremely high functioning…and doesn’t like to spend time with people she views as different. I’m torn by the feeling that I have a child who discriminates against those with disabilities, when she is someone the general public often stereotypes. Did I go wrong as a parent by not exposing her to enough people with disabilities? Or is this part of her figuring out that there ARE differences but that she needs to accept people for who they are? How am I supposed to guide her in this? I’ve struggled with this for several years already and I see it getting worse as we head into the teenage years….

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Can anyone give Em’s mom some advice here? I am hopeful Sarah will grow out of it. But I do have to remind her that we don’t judge others. Ironic isn’t it?

      • Tina Crouse

        For Em’s mom: My son Aiden was similar at that age and I felt awkward too. How could my own son with a disability discriminate against others? But as he grew older (now almost 14), the gap between his abilities and other kids began to widen. He could no longer play sports on regular teams but had to go to Special Olympics. I found him social clubs for kids with special needs because friends were harder and harder to keep. He was not being bullied or anything but as I said, the gaps got bigger and kids tend to have friends with similar interests AND abilities. The good thing that happened was Aiden began to see that he did belong with others with disabilities and as his understanding grew, so did his compassion and acceptance. He is a good athlete but at this age, talent is the determinant. As well, ability to read and do math and science efficiently becomes heightened. Being involved with special needs kids whose interests and abilities are in other areas has helped him tremendously. Things will turn out. Our children are a subset of the larger population and like race, religion or class, their ‘place’ will be found by going a different route to gaining self-esteem and self-acceptance.

        • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

          Well said, Tina!

  • http://www.facebook.com/kacey.howard1 Kacey Howard

    My little girl is 2, and this is the thing I fear most, because I wont be able to fix/change/adapt it. Thank you for sharing and I hope that those who have been there done that will offer some much needed advice!!

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      It’s coming in Kacey – stay tuned! And like everything in this crazy world, it never is as bad as we think it might be. This is a tough subject, but I can tell you many more stories of success and acceptance!

  • abbe gates

    My daughter is 16 and the night before last she came to me out of the blue and said mom, i want to be normal…i said honey you are normal, and she said no i am not, I have Down Syndrome…I said Sadie you are so perfect just the way you are and she looked at herself in the mirror and said i want your eyes. Now my daughter has so many friends with special needs, i dove into making her friends at a very young age and even though she has all these amazing friends, she still does not want to have special needs. Today before school she said “mommy do you think i am beautiful” and even though i tell her constantly how beautiful she is, and trust me she is beyond amazing inside and out, I hugged her and said she is beyond beautiful. I told myself, she is a 16 year old girl., and what 16 year old girl does not have issues with their appearance…..but it still hurt like hell and my heart broke……very tough when your kids realize, yes, I am different…XXX

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      This hurts, doesn’t it?

  • Sharon Vopal

    Just saw my good friend, Amy Allison’s response…our daughter is almost 5 years old and has a twin sister but we already see some signs that she pulls away from “the world” of “typical”. Does make my heart pound a lot faster as did your post. While it’s not ever as easy as someone writing something down for you, I will tell you that what gives up hope is something that Amy Allison told us and tells crowds of people wanting to know about DS…assume competence (that it may be rough but she can and will make it) and avoid learned helplessness (don’t overprotect and do too many things for her). And you’re doing both by getting her out there in the world. It will not always be easy but she can do it and with your love, she’s more than half way there. Keep encouraging her and telling her how much YOU believe in her…God bless you and your daughter.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Great advice – thank you for sharing! Hard not to overprotect too! I want everything to work out great every time and honestly, that’s not realistic for any of our children.

  • sarahmom

    I face this issue with my son, Adam, who is about to turn 17 and also has Down syndrome. I suspect this is a bigger issue for those with a higher capacity for independence. Anyway, Adam also has built walls up even though he wants to be friends. He’s aware of his speech difficulties so he avoids communicating. The things we’re doing are to work aggressively on speech therapy at home, not at school because he felt that drew attention to his differences. He also sees a counselor who is helping him with self-awareness and friendship strategies. He is going to attend the youth and adult conference during the NDSC annual convention this summer because I expect he’ll feel a bit differently about Down syndrome after seeing so many very capable self-advocates building their adult lives.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thank you for sharing. I also love that he will attend the adult conference. Great information for sharing with the group. My Sarah is also reluctant to communicate. Hurts my heart because so many of the kids at school want to be her friend.

  • http://www.facebook.com/tamikalbrier Tami Kalbrier

    My daughter is 19 and one of the blessings for us is that she has never thought she was different! The other kids have always treated her as a younger sibling! We live in a small community in Oklahoma where all the students and teachers just always made her feel so welcome and loved. She spent most of her school days in Special Ed at my request because along with DS she also had a stroke and her cognitive abilities are equal to that of a 6 year old. I knew that to put her in say a high school math class would only be setting her up to fail so her inclusion classes were home ec and computer! She loved school and attended 2 proms and graduated in May 2012 with her peers! In the 8th grade she was even invited by her peers to be a cheer leader! If your daughter could see in the mirror what you see in her and what others probably see in her she would be so much happier. I don’t have the answer to getting her to give the other kids a chance but I strongly believe if she can just accept herself she will find they accept her too.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Couldn’t agree more with your assessment. For anyone out there, we reflect to others what we think of ourselves. I am hopeful that if she can be successful in some other areas she will get more comfortable with friendships. Thanks for your comment and I love that your daughter has had such wonderful experiences in her life.

  • http://www.facebook.com/profile.php?id=554630970 Carol Bishop

    I do not have a Downs child but I have always been drawn to them as the most loving people in the world and will go out of my way to speak to a person with Downs. Sorry those with Downs are not invisible to me and I make sure they know it. They are such special people!

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thank you Carol. It’s funny how you can just tell if people are comfortable or not. I have found that most kids, truly do not care any longer. Thank you for being such a great support to our loved ones.

  • http://www.facebook.com/normanbd Bryan Norman

    I can’t imagine which is worse. Being different and struggling to be like everyone else, or being the loved one that watches the person struggle. Either must be so very hard.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      I think it might be a tie!

  • http://www.facebook.com/petalitos.rossie Fabby Garciia

    Thank you for you input on this. I am a young mom to Xael also with DS, he is almost 3 and now he seems to be keeping up with his peers as he is fully functional in all aspects not needing but speech therapy ( we did not know he could not hear until recently, he had surgery and now is doing well catching up fast). As he grows this fear arises. He seems pretty “normal” among others but my fear is always there that soon he will know because he is smart enough to figure out on his own that he is somewhat different. He doesn’t fit with the special needs toddlers but I know there will be issues among the “typical” world. I liked that term! Is always helpful to learn from parents with older children with DS. Thank you!

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thank you Fabby for your willingness to share. As I told one of the others on here, it’s important to be aware and be ready, but don’t be afraid. Fear paralyzes action and we just can’t have that. This will be no different for you than when you discovered your child had a hearing loss. You took care of it. Found resources, etc. I’m sure you will do great no matter what.

  • http://www.facebook.com/profile.php?id=1369722317 Sandy Goodwick

    Please… PLEASE TALK WITH ADULTS about this… the many of us who have also felt this way. Parents who do not have personal lived experience with a disability don’t ‘get’ the depths of where this comes from. If you only ask other parents, you are failing to see the ‘whole picture’ … that ‘disability’ is experienced by your children and your adult peers who were themselves children with disabilities. This alone is perhaps the single largest reason why parents absolutely need to develop cross-collaborative efforts with adult-focused disability groups. While it is hard to find an adult with Down syndrome who speaks out on this experience, there are many others born with disability who speak out.

    I was born with a syndrome – Moebius syndrome. People with Moebius syndrome have a distinctive facial ‘look’ and may be regarded as dull, cold, etc. So, believe me, not only do we know what it is like to grow up with a disability, our facial expression alone implies to others that we are ‘dull’.

    I am a long-time (40 years) teacher. I became one well before ADA, EHA, IDEA. Believe me, I know the suggestions that I not teach or that I go into ‘special’ education. I taught within (Lutheran) elementary education for 21 years – probably longer than many with whom I graduated college. I developed ‘disability awareness’ activities based on my own experiences as one with a disability.

    In going into public special education, I gradually became acutely aware of its “third world” status. I’m also becoming acutely aware that ‘our history’ does not exist – “diversity” is regarded as the domain of racial and ethnic histories. This has profound impact – there are no organizations where educators with disabilities speak out. (The “medical model” of disability still dominates much of ‘special’ education.).

    Your daughter is crying out for you all to see the problem is vast. Your daughter wants to be seen as “whole” – as a healthy person who lives with Down syndrome, one who learns to cradle the vulnerabilities it forces upon her with deep self-compassion. This is the same mindset that ALL kids need.

    It is absolutely normal for someone who faces oppression to feel that pain. The challenge you as a loving parent face is exacerbated by the lack of cross-collaborative efforts between parent-based and adult-based disability groups. When these different groups can deeply ‘breathe in’ the oppression of the other, they can help to jointly own one another’s pain and learn how to unite with a larger and more unified voice.

    Many adults bear scars from messages told them as kids – that their birth caused parents to cry rather than rejoice, that their ‘problems’ caused parents to fear having more children ‘because of them’. These are deep wounds – in honoring one another’s deep pain, we can start to heal.

    I want your daughter to know in her gut that it is absolutely OK for her to be proud of who she is while having Down syndrome. When I first heard the phrase “Disability Pride”, I thought – ‘now THAT is an oxymoron!’ … In learning to honor the deep pain I held for so long within, I have learned to take justifiable pride in that journey. Your daughter, and all other kids with Down syndrome, deserve no less.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thank you for sharing Sandy. My daughter is only 14, what group would you recommend for her that can help her come to terms with this?

    • http://www.facebook.com/paulette.beurrier Paulette Choiniere Beurrier

      I agree that adults with Ds could be very helpful. My daughter is 15. We had always told her she has Ds but since she was always in gen Ed classes it didn’t mean anything to her. About 4 years ago we started a local support group. A young man who is now 26 told Faith she has Ds just like him. He presented it as an exclusive club she is lucky to be a part of! He has a fantastic view of life, looking on those unfortunate people who are lacking the 47th chromosome.

      We are dealing with the normal teen stuff, but she doesn’t resent having Ds, although no one in school with her does. She enjoys the monthly meetings where she meets up with her compadres. I do think that is a worthwhile connection for your daughter to make.

      • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

        Great idea! Thanks for sharing!

  • Marcella S

    Thank You for sharing your story. I am thinking of so many families and children with all sorts of special needs who feel the same way. THe difficulty? Kids with special needs typically have social skills issues, while at the same time kids who do not have a special need don’t understand, or even if they do, they are not taught about the nuances. Another issue? I believe a lot has to do with LACK OF CHARACTER DEVELOPMENT. The schools that have a high standard and expectations along with a commitment to implementing character development tend to yield better overall citizens.
    THen there are a handful of kids who are just plain mean. The bullying thing seems to be rampant everywhere. There are many similarities of a special needs child with anyone with a chronic illness. I’m not sure what the solution. But wouldn’t that be an amazing experience to put just one or two typical kids together in a classroom or living space with all special needs kids for a while? There may be more empathy, understanding, and insight with an experience like that!

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Love your idea, Marcella! I have to admit too that the higher the character standards required by the school, the better our kids seem to do. Honestly, her school is wonderful. I have yet to meet anyone who doesn’t WANT to be her friend. Unfortunately, it is on her end. Frustrating!

  • Stephanie

    Thanks for your heartfelt post. I think every mom feels like “fixing” their child at times, but then we all come to some sort of acceptance.
    As a child I always wanted curly/wavy hair like my sister. Of course, as an adult, I could get a perm and be happy for a while. After several years of getting perms, I decided I liked my natural hair best. Not meaning to trivialize the issue, I think that is what we all go through with some aspect about ourselves, whether based on other people’s opinions of us –or just what we think they are thinking about us.
    When she was younger my 8 year old daughter refused to admit she has Ds. We watched the Deedah DVD borrowed from the Guild a few times and she liked how the boy said he didn’t like “Down syndrome” but calls it “Up syndrome.”
    I try to go in to her school general education classroom for a few minutes each year and talk about Ds and how it affects her. Though she doesn’t understand it all, I think she will begin to see Ds as a part of her, but definitely not the whole. Thanks again for your honesty.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks for sharing Stephanie. I am hopeful, that like everyone else out there, she will eventually work through it.

  • http://twitter.com/walkersvillemom Stephanie Holland

    Hello. My son is 26 and I wish I had the words of wisdom to give you on this one. As I read your post I kept remembering when Josh went to “summer camp” about six years ago. It was the first time he had been away from home and not with family or close friends. I was scared to death but thought – it’ll be good for him to experience. When I picked him up and asked him how it went, he said “Great.” I asked, “Do you want to go again next year?” He said, “Yes!” (pause) “But next time I want to go with the regular kids.”…He’s been exposed to both cultures, “special” and “typical” and it really seems that he does not identify himself as “special.” I think the other comment about cross-collaboration is a great idea. One word of caution though, as a “disability studies” grad student, I myself felt the division between physical and developmental disabilities in the advocacy world. I’m not saying that it exists everywhere, just to be careful. Good luck to everyone who is struggling with this.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Per your comment, “You felt the division between physical and developmental disabilities in the advocacy world.” Can you elaborate? Thanks.

  • http://www.facebook.com/Angelsnharleys Melissa DuPont

    My son is 15 he doesnt even know or care That he’s different! ? Never have I heard of another child with down syndrome hating that part of them ? I’m not sure if I would know what to say or not

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      I was shocked too, Melissa. Hope it’s very temporary.

  • http://twitter.com/doihavtasay doihavtasay

    My 12 old is very similar!! These feelings are also why we continue to support research for a cure!!
    Many parents seem to sweep this under the rug and want to think that having DS is GREAT, and it’s not. It’s not all bad!! But it does have rough spots, as does any difference in this world.
    Thank you for writing this.

  • http://www.facebook.com/yvette.leroi.7 Christina Lejean

    my daughter is 33 years old and doesnt even think she is different.maybe you as a parent should be helping her to accept that having down syndrome is ok..maybe as a family you should interact with other families with DS..

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks for your thoughts, Christina.

  • Roseann

    The first time my daughter , now 17 , ever made a comment when she was about 14 . We seen a girl with Down syndrome in a Walmart , which I knew from a support group . She said ” Mom am I like her ” and I said like what , do you mean does she have Down syndrome like you ? My daughter is higher functioning then this girl, but I said yes she has Down syndrome like you , but like every other person in the world were all different , no one is the same in this world. I think at times it does bother her because she does , she never wants to look in the mirror because I think she doesn’t like to see her Down syndrome , but she is beautiful and I try to make her understand and see that . It’s so unfair that they have to live with a label attached to them , people with Down syndrome has come such along way from what was years ago , but yet that typical label still sticks !!!!

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Agree! Wish we could just ditch the name.

  • Erin

    I disagree! While I respect your experience, I don’t think a generalization that all kids with Down syndrome hate their lives. I have two young boys, both of whom have DS, we CHOOSE to celebrate their differences and strive to educate those around them that they are different but there is beauty in that fact. Will kids make fun? Yes. Will their feelings be hurt? Absolutely. But I know that mine were hurt in high school, its part of growing up, I suppose. This article makes me sad, my heart goes out to your daughter. I hope that one day she will be confident in her own skin!

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      I don’t think I was trying to say that all kids feel this way. I was really just writing about it because I see there are some kids who do feel this way. And based on the comments to this blog post, there are a lot of kids who do feel this way. We are just sharing, exchanging ideas, not judging or lumping all kids into a certain group. And, it isn’t the other kids that are making fun of her, it’s that she won’t let them get close to her because she is afraid. Sorry if this was upsetting to you, not meant to be.

    • Atw

      Sorry, I didn’t mean to up vote or down vote this comment. I’m new to blog and am viewing from a touch phone.. Sorry ;(

    • Erin

      I’ve been thinking about this more and more. I often look at older individuals with Down syndrome and wonder what raising a child with DS was like 5, 10, 15 years ago…its been my experience that very little information was known about the potential of a person with DS. Parents were told horrific lies about what the future would look like for their family. Today things are much, much different. Yes, there are some medical personal who are ignorant as well as typical citizens. I wonder if you, as a parent, hate the fact that your daughter has DS. Could you possibly be projecting your feelings on to her? While I HATE the fact that my boys have to endure so much because of their diagnosis, I do NOT hate the fact that they have DS. That extra chromosome has brought so much to our lives and so much to theirs! Eli and Malachi would not be themselves if they were not born with DS. I love your honesty and think that perhaps things may be different if you yourself chose to celebrate the uniqueness in your daughter!

  • Clare Hitchens

    My son is almost 20 and doesn’t really grasp the idea of Down syndrome or disability. He really does see people as individuals. We do spend a lot of time with our Down syndrome community doing family events but outside that he is included in the regular community as he was in school. He has always played sports on regular teams. He was a difficult teenager in some ways, he made it difficult for people to like him sometimes, and I had to keep reminding myself that I didn’t particularly like my older son when he was 17 either! Life for son with DS got a whole lot better once we let him leave school. Don’t get me wrong, his school was pretty good, but he didn’t want to stay any more when the kids he came up with were going off to college. He is much happier with a part time job. His independence skills have blossomed. I really recommend the book Mental Wellness in Adults with Down Syndrome. It covers what’s typical, what’s troubling, etc. and it helped me a lot. http://www.woodbinehouse.com/main.asp_Q_product_id_E_1-890627-65-8_A_.asp

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Great idea! Thank you.

  • Mel

    Hi, I’m not a mum and don’t know the full context of your daughter’s situation but maybe talking about what DS means to your daughter and how she perceives it could help getting to the bottom of why she hates it. Also talking about what other children at school might be going through even though they may appear perfect all people get put down at some point in their life. That’s great that others are showing interest in being friends with her, talking about why she doesn’t want DS may have something to do with friends so this may help her identify that she does want to be friends and help her recognise the people that appreciate her (and what to do if someone close does say something hurtful). You can only be as close to someone as you want to be. Encouraging her to find a social activity structured or unstructured, sounds like a bit of trial and error for everyone. I hope this helps and it sounds like you’re doing a great job having a close enough relationship for her to be able to talk about these things with you :)

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks Mel. You have provided me with some good ideas.

  • Suzie Smith

    When my daughter was little she was interviewed and her answers were very positive. A few years ago she told me Ds was bad to have. Now she says she is unique, different, and cool. She is 13. She will be trying out for 9th grade cheerleader next week. I hope she continues to think she is cool for a while, because she really is!

    • Suzie Smith

      You can read more about Lily at http://www.lilyslifeisgreat.com

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks for sharing. I think finding something they love and are passionate about sure helps. Good luck on tryouts!

  • Ingrid

    Dear Valerie – I am the mother of a 3 year son with DS and although we are very early in this adventure, I have found that reading and meeting young adults with Down syndrome, who are taking “the cards they were dealt with and making the most with them”, bring more than inspiration and hope that our son, one day, will also be a contributor in our community. Check Robert Pio Hajjar – we are in Ontario, Canada, not sure of your location. He does travel to the USA. To hear him give his speeches is exhilarating and inspiring! He established with his life savings (of $62.50) his own charity organization to spread a message of acceptance and inclusion. https://www.facebook.com/IdealWaycharity

    There is no denying that Robert has blossomed as much as he has due to several factors….but once you hear his message, you understand that if HE can, you CAN too.

    Hugs,
    Ingrid M.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks Ingrid.

  • Dwranny

    Hi everyone. My firstborn, my son, Christopher Michael is 40 years old now. I was single, young, and his dad did not want to be known or seen with a “damaged” child-it ruined his neighborhood image. I raised Chris relatively by myself.

    I was given “worse case scenario” by doctors when he was just a toddler and asked if I wanted to keep him. My mother is the one who told me he was a “gift” and that I should do all I can to try to make of my situation what I could. She said we could learn together. I was only 20 when I had him. I worked and went to school and found neighbors to watch and love him as I would. I was blessed. Occupational therapists came to my and the sitters’ homes to work on him and teach me what to do to keep him motivated and strong. I was fortunate enough to later find doctors who cared for him that allowed me to borrow their books (not much was written on Downs back then), so that I could better understand what Downs was and what to expect. There are different stages and outcomes based on the child’s level and interaction and support he or she receives. I almost lost my job a couple of times from having to not come in or leave unexpectedly to care for him when problems arose with his health. Again, I was blessed and stayed on that job for almost 40 years! People were becoming more aware and ADA kicked in. Chris went into the public school system at 6 and came out at 18. I had hard decisions to make about his care but I never gave up. I fought with the doctors, his teachers, his sitters, my family, and gave him all the opportunities I could find. I screened his schools, care facilities, did searches on info on his doctors, and caregivers. I bucked the rote practices of his earlier schools when they tried to teach him sign language but did not even tell or invite me to learn. I pulled him out of the classes and followed the advise of an old doctor I knew. I filled his mouth with crackers and peanut butter, got a face full of muck but we “conversed” until he started using his tongue to talk as best he could. Now he talks! Not well, but he talks…no signs! He walks because my and mom pulled him with ropes on his hands and thighs slowly around the house and up and backwards down stairs. It was hard but it worked. I could not afford expensive doctors and classes. We used plain old common sense!

    I enrolled him in the special olympics for several years and even met one of the Kennedy-clan who sponsored them back then. He learned self-appreciation and teamwork and had the support of friends and family to help him move forward.

    I can sense he understands he is “different.” But that does not stop him or me! He has been in sheltered workshop and using paratransit services for years now. He is tickled pink when he brings home his artwork or paychecks (not even enough to cash most times-but they are EARNED).

    I have managed to send him to special ed summer camp (coed and for all ages) for several years now. He goes for two consecutive weeks each year and has a BLAST! It is his much needed vacation from us and ours from him. We appreciate each other more when he returns.

    I don’t think that the little girl in the story would “hate” Downs if she were given the opportunity to mingle with others like herself and get involved in activities that take her mind off of herself and her situation. This has to come from and be supported openly by her family and community…especially her family.

    I will not be around forever, I had to start thinking about him when I am gone. I had a special needs attorney do my will to plan for that time. My other children understand him, know my wishes and habits, and his way of doing things. They are ready to step in as I need them. He does not get special treatment and has chores like everyone else. He has supervision when and as needed too.

    Feeling depresses about a situation could mean that there is no support mechanism in the person or those around to help that person find other avenues to express him or herself. Start singing, dancing, or playing music…get them out of themselves! That is the problem. They imitate what is around them. Change what YOU are doing and they can and will change!

    There is a great deal to look forward to with special needs children. Initial counseling for both the child and family may be needed to break this syndrome of what sounds like depression or giving up. Look for support at churches or special ed schools/workshops, state or private services that specialize in these things. Many states have outreach programs where pools of information are waiting for you and can help you find resources for yourself (as caregiver(s) and your child).

    I am sorry to have gone on so long like this; but, I believe this situation can be made better before it is too late. There is still time to turn this around. I did not join community groups and sit in sessions to discuss what could be done and them mope about my situation. I found out where resources were and chose those that fit my and my son’s situation. Please do the same. All things are possible with God. If you are not religious; then, know that there are millions of us out here with the same and similar problems. We can learn from each other. Bless you and keep trying. If you can look up…you can get up!

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks for sharing.

  • Dwranny

    Sorry, I forgot to mention that my son, Christopher Michael, needed something to do that kept him physically fit as well as mentally (workshop). One of his sisters was taking classes and we had become very close with the owners since my husband passed. I asked if they could teach him. A trial period was agreed upon and he did progress. He has been in karate ever since. He is rarely sick and is very strong. He still goes three times a week. The kids and staff there have learned to communicate with and respect him. He has learned to work with others and do some office chores. He feels he as worth, it shows. He feels comfortable and safe there.

    He has won several tournaments and has medals and trophies. He is now a 1st degree black belt and his sister is a 2nd degree black belt. He assists and she instructs adults and toddlers. Everyone looks out for each other there.

    Now that he is getting older, I am looking into other things he can do. I always am. Those of us with special needs loved ones in our lives can learn so much from them. Keep heart and faith. It is less frustrating when we chose to live with them rather than for them. Thanks for listening and stay blessed everyone.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Great advise and great wisdom. Thanks for sharing. Especially love your last comment. Wonderful.

  • HF3379

    I have a 4 year old son with Down syndrome which is how I came across
    this post. I’m obviously very early in the Down syndrome journey so I
    can’t be much help in that area.

    I am, however, a big supporter
    of mental health counseling, by schooling, profession, and personal
    preference. I support it for big and tiny issues.

    I don’t
    believe only those with mental health complications should pursue it,
    but anyone looking to have someone listen to them without the added
    factor of personal history. A therapist listens and cares because they
    are paid to and because they enjoy their job. And the person seeing the
    therapist knows they are paying for the service so they can maximize
    the session to be whatever they want it to be about, whether they want
    to rant, tell jokes, or just sit there and cry.

    For these
    reasons, maybe you could consider finding a social worker, licensed
    counselor, or child psychologist for your daughter. It certainly sounds
    like y’all have an awesome mother-daughter relationship, but she may
    feel comfortable talking to someone else about certain things. (My
    oldest child without Ds has seen a therapist a few times. He started
    because of a bout of anxiety after experiencing Hurricane Katrina. He
    continued for a while for no particular reason other than he liked
    visiting her and “unloading.” He liked that his time with her was
    always just about him, and he could talk her ear off for an hour without
    interruption.)

    So if you did take your daughter to see someone,
    reassure her that nothing is wrong with her…she isn’t seeing this
    person to be “fixed”. It is new friend that really wants to know about
    her life.

    Thanks for thinking of us parents just starting out on the journey!! You and your daughter will be in my thoughts.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thank you and great idea! Thought about it myself. You bring clarity to it. Thanks.

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  • Maggie

    I’m sorry to hear that your daughter is feeling this way… Though I do agree that it is pretty typical teenage behavior. Interestingly, my 11-year-old daughter with Attention Deficit Disorder (No hyperactivity — inattentive type), expresses and says the same thing your daughter does. She separates herself from friends and peers who like her and seek her out because she doesn’t want them to see how “different” she is from them. We focus on telling her and demonstrating that everyone is different but she’s not terribly interested in hearing it b/c she doesn’t want to be “different like this!”
    I hope my boys — 8-year-old identical twins with Down syndrome — never feel this way. I know they don’t feel that way NOW. They think theyre just like their friends… Though I acknowledge it’s possible they’ll eventually come to the realization that they’re different as other kids ask them why they “can’t talk right?” But, I take comfort in knowing they have eachother and they’re as close to exactly the same as is genetically possible.
    Sounds like your daughter (and her friend) could use a friend who is a more positive peer role model with strong self esteem — with or without Down syndrome — who accepts your daughter for exactly who she is and who accepts herself as well. I don’t know but I hear the teen years are dependent upon strong peer relations and peer role models.

    • http://www.facebook.com/people/Valerie-Strohl/1664257702 Valerie Strohl

      Thanks Maggie for your input. There is comfort in knowing my daughter isn’t the only child who feels this way, but hurts none the less. I agree with you when you say peer relations is the key. But like your daughter, so hard to get her to trust. It will be interesting to see how your twins do given they have each other, and there is no bond as close as twins. Hope you will stay in touch with us.

    • http://www.facebook.com/leanne.strong.9 Leanne Strong

      Boys don’t usually show or admit that they care how they come across. Us ladies usually show it more advertantly than guys do. I have Asperger Syndrome, but I still care about my hair, clothes, and even nail polish (and I still LOVE shopping!)!

  • Leanne

    I feel similar to how your daughter feels! I’m almost 20, and have Asperger Syndrome (High-Functioning end of Autism Spectrum), and I wish I didn’t! My verbal skills are within normal limits, but I still have difficulty expressing my thoughts and emotions, as well as understanding non-verbal communication. I also have trouble knowing what is appropriate (although I am a very kind, gentle person). I wish I could go to my parents and say the same thing about my having Asperger’s as your daughter said about her having Down Syndrome! I wish I could say, “Mom, Dad, I wish I didn’t have Asperger Syndrome,” or, “Mom, Dad, I hate being on the Autism Spectrum!” I’m currently looking for a cure for Autism. I’m not sure if we’ve found one yet, but I’m still looking for one! I was looking into trans-dermal chelation, because I’d seen a video on Youtube about a boy with more severe Autism, who had done that type of treatment, and showed a lot of improvement. But when they ran blood tests at my doctor’s office, it showed that my mercury levels were normal (some cases of Autism were believed to be caused by high levels of mercury in the body). Another type of treatment I was looking into was stem cell treatment, because I’d seen some videos on Youtube where parents of severely autistic kids talked about their kids’ remarkable improvements after the stem cell treatment. When I asked my doctor about stem cell treatment for ASDs, he said he didn’t know anything about it, and referred us to a doctor at a local hospital. When I spoke with that doctor, she said that those people who claimed that their kids showed improvements after stem cell treatment were really just working for the stem cell clinics, trying to promote and sell their therapy. She did, however, tell us about a website called clinicaltrials.gov. You go on the website and type in, for example, “Asperger Syndrome and Rochester, NY,” or, “Down Syndrome AND Seattle,” and it will show you if there are any trials or studies in that area.

  • Leanne Strong

    I’m not a parent of a special needs teen, but I actually have a little bit of a disability myself, so I understand how your daughter feels. I’m almost 20, and have Asperger Syndrome (High-Functioning end of Autism Spectrum), and I sometimes wish I didn’t. I wish I knew how to tell my parents what your daughter told you (my verbal skills are within normal limits, but I still have some problems with some other aspects of communication). I would like to tell my mom, “Mom, I hate having Asperger Syndrome!” When I was in middle and high school, I hated that I had to have a one on one aide when none of my peers did! Unlike your daughter, though, I think meeting other people with Asperger’s actually helps me to feel better about my diagnosis.

  • http://www.facebook.com/leanne.strong.9 Leanne Strong

    I’m almost 20, and have Asperger Syndrome (High-Functioning end of Autism Spectrum), And I feel the same way about my disability as your daughter does about hers! I wish I didn’t have it! I wish I knew how to tell my parents what your daughter told you (my verbal skills are within normal limits, but I still have a little difficulty with some other aspects of communication). I wish I could go to my mom and say, “Mom, I hate having Asperger Syndrome!” Although, unlike your daughter, meeting other people on the Autism Spectrum actually helps me to feel better about my diagnosis because I know I’m not alone! If there was a cure for ASDs, though, I would take it because I don’t like having all the difficulties and sensory integration issues!

  • Jai’s Mom

    My 32 year old son announced about five years ago that he quit having Down’s. When asked by a Dr. if he had Down Sydrome he said, “That’s right. Yes.” So he does know so why “quit”? I found out resently when I asked him about about it. He said, “You know, ‘let people DOWN!!!’ I don’t want to do that anymore!” So there you have it. It was a phrase that I’m sure was used when he was late and had kept his support worker and others waiting.

  • http://www.facebook.com/leanne.strong.9 Leanne Strong

    I’m 19, almost 20, and I can honestly say the same thing 2 my mom! I don’t have Down Syndrome, but I do have another disability (Asperger Syndrome, High-Functioning end of Autism spectrum). I can honestly tell my mom, “Mom, I hate having Asperger Syndrome!” I’m pretty sure she can already tell, though, because I have showed her some videos on youtube about treatments that claim to cure Autism, and then asked if I could talk with my doctor about some of those treatments (Asperger Syndrome is on the High-Functioning end of the Autism Spectrum). I think part of that is teenage years. Many teens notice that they are different because they have watched so many teen shows and movies, that they fear getting picked on for being different (I did, anyway). But I also think part of that is just girl nature. We have that “Image” thing, where we really care about how we look and how we come across (and I definitely do).

  • Deepa

    Its absolutely wonderful to have found your page. My daughter is 6 and I cant imagine her coming to me and telling this..Sonehow i always believed that our kids dont get normal or down syndrome. But high functioning down syndrome kids do have such an observation..this has got me thinking.
    You are doing a great job and I loved reading your posts..

    Thanks
    Deepa
    http://aarshiandmama.blogspot.in

  • samoohaj

    hi valerie

    i am the mother of a 5 year old boy who has downs.. and your blog made me notice the fact that we have NO contact with any other family who has a child with special needs.. i have another 3.5 year old boy who doesn’t have DS and they are inseparable.. but even before i read your blog, i’ve been wondering for a while now, what will my 5 year old “Hamoudeh” do , when his brother and best friend “Omar” wants to have a somewhat more “separate” life.. hamoudeh is loved at school, but i know that he cannot keep up with the other kids, and that when we go to play dates with other “normal” families, Omar tends to forget his brother because he wants to play with the other kids for change.. but hamoudeh can’t keep up with them, and so most of the time, he is left alone, or he is watching them from a distance..

    i also want to say that i love my son to death, and i accept who he is entirely, and is doing everything in my power to help him and to enable him to reach his maximum potential.. but i hate down syndrome.. yes, i hate it from the bottom of my heart.. and there is no shame in that..

    i wish that there were no such illnesses in this world.. and i wish that all children are born without limitation or obstacles.. hating down syndrome does not mean that i “do not accept” my son.. it just means that i wish he didn’t have it.. just like your daughter..

    i do agree with all the parents that said that you should engage her in various activities, and that she will eventually find her way.. that’s what i’m planning on doing for my son.. and i want to start looking for other families who have children who have DS, maybe it will open new horizons that we’ve not experienced before..

    i noticed that my son tends to create friendships with other children who have special needs from other classes (he is the only special needs kid in his class, each class has one child with special needs in our school) , this year he is very good friends with another girl who has cerebral palsy, and last year he was also very good friends with another girl who had another problem, but i’m not sure what it was.. so i guess, he already knows what he wants.. and maybe what is good for him…

    thanks for the story and the advice !

    samah