A Special Needs Mom’s Heartache: Not What You Expect

I know that when some people look at my family, they see heartache. They see struggles. They think to themselves, “Thank goodness that’s not me.” They imagine that my life is difficult, that I am sad most of the time, and that I want to escape from the hell that I’m living in because I have two children with disabilities.

But they’re wrong.

It isn’t my children that make life difficult, bring sadness, or make me long for an escape – it’s the people that believe these things about my family. Our daily life isn’t much different from that of other families. We laugh and love; we eat and drink. I do the laundry; Mr. Andi mows the yard. Sarah Kate does homework; Nathan plays with toys. It is a beautiful life.

But there’s a cloud that casts a shadow over us.

When I check Twitter for stories about Down syndrome and cerebral palsy and find that my feed is littered with people using the hashtag #downsyndrome as an insult, that hashtag cuts me like a knife.

When I open my Google reader and am greeted with new stories about an individual with Down syndrome who’s been abused or a kid with cerebral palsy whose wheelchair has been stolen, my heart is filled with trepidation.

When my reader fills up with financial press releases touting the benefits of a test that will allow pregnant women to avoid invasive and risky amniocentesis, and anticipates its widespread adoption in terms of cold, hard dollars and cents, I die a little inside.

When I hear the r-word used over and over and over again in films and other popular media, I wonder if there’s any hope that people with disabilities will one day be accepted as just another variety of people.

It isn’t the people inside my house that make life difficult. It’s the world outside.

I don’t have a problem with prenatal testing in principle. Many children with Down syndrome are born with serious health problems that need to be addressed immediately, and knowing ahead of time can enable the parents and physicians to prepare for the birth. The fact remains, though, that in approximately 90% of cases where an in utero diagnosis of Down syndrome is made, abortion, not preparation, is the outcome.

Fewer people with Down syndrome means fewer dollars for research.

Fewer children with Down syndrome in schools means teachers are less able to gain the experience necessary to teach them effectively.

Fewer individuals with Down syndrome on our streets means fewer people will be exposed to this unique population, making it more likely that those who remain will be regarded as freaks (and we all know what happens to “freaks” – they’re mocked, derided, and abused).

Fewer people with Down syndrome also means fewer parents, siblings, and friends who are able and willing to go to bat for the chromosomally-enhanced.

My children are delightfully unique individuals with engaging personalities who have much to contribute to our society.

Why can’t everyone see the beauty that I see?

——

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Comments

  1. Laurel says

    Wonderful Andi,

    YOU are a treasure!! You have expressed what dwells in the hearts of parents, grandparents, siblings, family members, and dear friends of the many folks who love a jewel (or several) from God, that others call ‘handicapped’.

    I, myself, try to work these same things out in my head, saying to myself that those who speak such harsh and derogatory words & taunts, and those who do such inhumanly mean things to ones who have no defense must surely be the most self-depreciated people on this planet. They must have the lowest self-esteem, and the most skewed self-image. They must hate themselves very much, in order to lash out at the dearest ones God has made.

    Maybe it’s true…. maybe they are miserable wretches (and sometimes I really hope they are!! <<— Yes, I am quite human, myself! haha!), but sometimes I think they are just plain mean, and extremely arrogant. Surely, though, deep inside them, there is a small voice (likely, VERY small, in most cases) that stings them deeply in their conscious as they perpetrate such hatred and abuse. How can one person hurt another and not feel it somewhere within? Sadly, though, I believe this repeated action of anger, hatred, abuse, taunting, joke-making, and so on, gets 'easier' with repetition. The presence of a small voice of conscious is greatly muffled by subsequent ill-mannered actions.

    YOU are a breath of living, fresh air. You are hope to others because you address the pain that so many really feel. You bare your soul to others, when they wish they could do the same, but can't find their voice. You literally Bring the Sunshine…. You open the window and let the breeze in…. you even give some much-needed chuckles, at times, to those who may not have laughed in a long time.

    Thank you for this blog, and for your transparency. You don't realize how many folks you are 'watering' and helping to grow stronger.

    Never forget that God sees all, and nothing happens apart from His knowledge. Today is not all there is.

    Many Hugs,
    Laurel

    • Andi says

      You’re welcome, Laurel, and thank YOU for everything you said here. I am humbled by your accolades, and of course I would be none of those things that you believe me to be without my wonderful children as my inspiration.

  2. says

    There’s so many things I want to say about this, but all of it comes back to fighting ignorance. It’s awful that the people who take an oath to first do no harm are often the ones spouting the most ignorance of all. There’s got to be a way to educate doctors.

    I love you and your family and I’ll scream from the rooftops to make sure people know how amazing you all are. I wish I knew how to fix this. But just like my last post, the only thing I know for sure you can do is live. Lead by example. And you do. Better than most people I know.

  3. Kelley says

    Until I take my last breathe here on earth I will continue to fight not only for my daughter but others to get the respect they deserve. I will correct anyone that makes fun of anyone that is different or uses that “r” word. But I have always been this way because when I was younger I would stick up for my cousins: one had MD and another had a severly deformed leg due to getting burned. I do not need anyones pity or look at my life like it’s a burden. I hate it whenpeople say “I just don’t know how you do everything. I am just not that strong.” Really because I see myself as being no different than another other Mother with children that also works full time. Yes my youngest my require extra appts to doctors and therapy, but I generally tell people “they said my life would be challenging with my baby girl, but someone forgot to tell me how challenging a 5th grader can be, because I will gladly take all the stuff we do Lacey over trying to get my oldest to do homework, study for test, read AR books, write papers….” We all have difficulties in our lives, but I love my life and I can’t imagine one day without my baby girl. My children are my greatest gift and one day we will get society to understand that having a child with a disability is not the end of the world or a burden or that we sit at home all day in misery, it’s the beginning of a new adventure that is like riding a roller coaster. I wouldn’t change my life for all the money in the world.

  4. Rosemary says

    Thanks Andi these are the exact feelings I always have. I am no stronger than anyone else, I am not special. Yes times can be difficult, my son is now 16, and we have laughed and had more fun than we ever thought we would. I too am angered by research that screams ignorance when it comes to DS as if it’s the worst thing anyone can be born with.(pity they can’t find the gene for murderers or the like) Why are they so devalued in our society or is that exactly it – we are all put on this imaginary scale of value when we are born. And who is it that has the right to ‘value’ us! Why are others so ‘broken’ that they feel the need to put anyone down who has a disability? Still we push through and come out the other end. My boys are the best no matter what difficulty we/they are going through. Hopefully one day everyone will see that.

    • Andi says

      You’re so right, Rosemary – who, or what, exactly determines “value” in our society? My children may not be able to accomplish certain things themselves that others deem “productive” but maybe just their presence helps other to achieve MORE. I am reminded of the video that I posted in my Sun-Beams recently of the young man with cerebral palsy who was on the cross country team. When he was a senior, they won their first championship in something like 13 years. Yes, he was always last. But maybe his presence made the others on his team run faster…

  5. says

    I think it is important to remember the person you were before special needs became your new buzz word. Our children are the ones who have educated and changed us, but we can’t be surprised that other people don’t find it as important an issue as we do or understand it as we do as they haven’t been on this journey. There is a huge community of special needs bloggers that has the power to educate people that have no idea, but surely the best way to do it is not by telling people how wrong they are getting it all the time so everyone is so paranoid of saying the wrong thing that they pretend they can’t see you at all, but by sharing the beauty that you have been taught to see by your children, and encouraging other parents to open up the special needs community to a wider audience. That can’t be done if we’re so busy pushing them away because they hurt our feelings.

    That said, it was heartfelt and beautifully written x

    • Pam says

      Renata,

      Both the post and your post are well written. I tend to forget how I behaved and what I said before I had my children with special needs. I am learning to take people where they are at and to gently share with them why I feel strongly regarding using the ‘r’ word, and advocating for my children’s right at school instead of condemning them for not understanding because they have not had my path of life.

  6. says

    As a single parent for 7 out of my DS son’s 9 years, I’ve had the contrast of seeing many traditional families provide the best supportive environment for their special needs children. I married a wonderful man a little over 2 years ago who has a stepdaughter from a previous marriage much more worse off than many kids mentioned in these blogs and Twitter posts.

    I am just now seeking out others in similar situations to mine after pretty much being oblivious to the various online social sites…and being oblivious is so much easier! My hubby brought to me the attitude that you just have to deal with whatever comes up. We live a low key life and have been spared contact with many people who react in a negative way to Mr. Jim.

    Things are said from time to time but I do my best not to let anything get to me. On the flip side, I don’t feel boosted by nice comments or reassurance. I take in advice and observations concerning my son but ultimately I am just looking to live life and to trust my own instincts.

    On the dark side,my husband has various physical problems and is on disability and wonders why anyone would want him…and I had a similar attitude about myself because I had my son when I was 42. Most guys looking to date later in life are looking for ladies with grown kids or at least normal ones. I didn’t even bother trying to look for several years. I just turned 51 and my husband will be also in a few months, just so others know that there is hope if you ask God to send you the right person. Somehow, we figured out that love is worth choosing just as I had to take on having a child with DS (which I knew he had via an amnio) and loving him as he is. He can’t talk but he sure is a cutie-patootie.

    It’s hard enough to find someone to care about your kid as much as you do, normal or not. There are too many men who aren’t even in their kids lives (like my son’s biological father)or that do harm to them. That is where the true heartache is…so more power to the families who are intact.

    People can only make your life difficult or hurt your feelings if you let them. I look at it as a way to work on your inner balance and peace. It is important to provide influential encounters with others to show that they have the wrong idea…but they aren’t going to believe you if you are bothered by what they said… for others DO pick up on your vibes, facial expressions and body language.

    I say hone in on those people who truly care and ignore the rest. My goal to gather contacts who I can relate to, ask advice about certain issues, and find out about the positive things others are doing in the world. It will take some time but at least I got a good start!

  7. marcella says

    you have brought me to tears ..you have put in print what we feel in our home , you made it so clear and i want to thank you xxx

  8. christel says

    i have a daughter who has CP and Cornelea De Lange, i, like you hated how the public looks at someone who is different, i am a single parent and raised my 3 children, my other 2 daughters have learned never to look at someone different in such a cruel world, because of their sister they have learned to love and protect her, to cherish all individuals and not judge someone by their looks or physical disabilities, it has also taught my grand children not to judge or be ignorant of the fact that we are all different, yet all the same, and everyone deserves common courtesy and respect, i hurt when my daughter is in pain, i would give anything to hear her talk, and do things that we take for granted daily, but i would be devastated without her, she has brought the same joy in my life that my other 2 have brought, yes there are days of total frustration, your life is not your own and what other people take for granted, we call miracles, but i wouldn’t trade my life for anything, keep up your positive out look and love your children for who they are, knowing they have your love will always give them the strenght to deal with the idiots on the outside.

  9. Valerie says

    What a great article. I feel the same way. My son is deaf-blind, my views just like yours. I hate how the world views our children. School systems alowing teachers to sad nasty things about students. Thanks for sharing…

  10. says

    Thank you loving, caring and articulate article. Savingdowns shares your vision and concerns – thank you for being a voice for our children.

  11. Holly says

    Andi, I believe there are plenty of people who will still choose life. The tests change over time but people don’t.

    • Andi says

      You’re right, Holly – there will always be people who will choose life. Mr. Andi and I declined all prenatal testing except for ultrasounds (we wanted to know the gender!), not because we naively believed that nothing could go wrong, but because we knew without a doubt that we would never abort the child that God gave us. I know we aren’t the only ones.

  12. Shirley says

    Every person I have known with Down Syndrome has a sweet, sweet personality. The school where I was playground aide had classes for the physically and mentally disabled. We had a girl adopted from an orphanage in Romania who had been neglected for years–I see this child, who is now an adult, at the library checking out books. Her mother recently told me that she has a job. Another child was a 3rd grader with Down Syndrome. My fondest memory of her is helping get her unstuck from the basketball barrel where she had crawled headfirst and couldn’t get out. She wasn’t scared and came out laughing. I see her frequently at the library, also, as an adult, checking out books and music.

    Then there was the 3rd grader who had been “normal” until complications with chicken pox left her brain injured, having to be revived three times…a beautiful miracle child. She had to relearn everything and was more like a toddler in her emotions than a 3rd grader. She loved the monkey bars, but couldn’t get all the way across and would drop and land on her bottom and bruise her hands landing on the pea gravel. When she came crying, I was told to just send her to the school nurse for a few love pats, and then she would be all better again. After doing this a few times, it just got really tiring, and I couldn’t see how that would help her “grow” out of her baby ways, so I decided to teach her how to land on her feet, like the other kids did. The next time I saw her dangling out in the middle, I went to her and held on to her and told her to just drop down and land on her feet, and then she wouldn’t hurt her hands. She was eager to try, and she did it! Not once, but over and over again, she climbed back up and dropped to her feet, without my help. A few days later I noticed a lady coming across the playground toward me. We were to make sure “strangers” on the playground had a pass and belonged there, so I approached her. When we met, she introduced herself as one of the mothers, and was wearing a pass badge. Then she proceeded to say, “I just want to thank you.” Her little girl had come home all excited because the “whistle lady” had taught her to land on her feet instead of her hands, and she didn’t get hurt any more. Then she shared with me the details of her child’s brain injury.

    Then there was the 5th grader who was always in trouble, grabbing the basketball and keeping it until the others would get upset. I sent him to the time-out wall again and again. One day my co-worker told me that he was from the MR class and that he actually was more like a toddler. Well…nice to know that…finally! He looked like a “normal” 5th grader to me, and I had been dealing with him like a 5th grader who should know better. After that, without treating him like a little kid or insulting him, I began to teach him what toddlers need to learn. I taught him to SHARE. I taught him to TAKE TURNS shooting the basketball. I helped him learn how to play fair with the others. And his playground behavior improved, and he stopped having to go to time-out. He even began to stay put in the line when the bell rang. One day, his teacher walked all the way across the (huge) playground to tell me how much she appreciated the way I helped her kids. I don’t know how she knew anything. I suppose that it was helping them even when they returned to class.

    The children from Special Ed. were my “favorite” kids on the playground. Even though every day was a challenge to them, they were always eager to learn, sweet and friendly little kids. I remember one little boy from the island of Somoa…”Sumwa” he pronounced it for me. He was always happy go lucky, and he and his little chum were my shadows, following me around waiting for me to blow my whistle, then would jump in glee when I did. His dream was to grow up and own an ice cream store. I hope he has seen that dream come true. Have not heard or seen anything about him.

    When I was a teen-ager, we had a young neighbor man who was mentally retarded (that was not an insult when we said it, but was what we called persons with low intellectual ability back before the days of politically correctness.) We loved him and would invite him into our home when he knocked on the door because his dad had locked him out. We played baseball with him in the street. He had no teeth (they pulled his teeth back then because he seizured), he had trouble speaking and sometimes couldn’t get his words out (stutter), and was partially paralyzed on one side. He had been to school to the 3rd grade, and knew some math and could read some. We listened to him name all his teachers, aunts and uncles over and over again, until we felt like we knew his family. He loved Johnny Cash and Elvis Presley, and delighted in us going into his room to listen to his newest album. If we put it into the wrong jacket cover, he would get onto us and tell us that was not the right one. It always amazed me how perfectly he could do things, and he had a huge penny collection, and when he got enough saved up, would buy another album. After his father died, someone helped get him in the Dale Evans Rogers School, where they taught him to make Christmas bows. He rode the bus to school, and worked in their “factory” for many years, getting a paycheck for making bows. He saved his money and bought a new record player (phonograph). When his mother died, he moved to a group home. He was still alive a few years ago, and would be probably in his 70’s. I remember how much we loved him, though there were neighbor kids who were not taught to do so, and taunted him endlessly. That was angering and sad.

    I really don’t see the point in anyone mistreating the disabled. And I do not like to hear normal kids call each other “retards”, nor do I like to hear them say that to a disabled person. We never said that to our friend, even though that was the terminology used in those days. We just knew that he was who he was, and he didn’t cause it and couldn’t help it, and we just loved him like he was. Of course, we were taught the Golden Rule…”Do unto others as you would have them do unto you.” And that makes ALL the difference!

    • Ellen says

      Thanks for sharing your beautiful memories of some special people. I think this links back to K’s earlier comment that our biggest problem is ignorance, which leads to fear. One of my first jobs out of university was as a personal carer for two severely disabled girls ( both non- verbal, one with no voluntary muscle control and the other with severe epilepsy which by the time I came to work with her had left her unable to walk unaided). I cherish the time I spent with those two girls and their families. Some people shook their head when I told them what I did and would say those girls were better off dead. I could understand how people who didn’t know any better would think that, so I would shrug and tell them that those girls had families who loved them and who they loved, and that they were cared for and safe and were able to show us they were happy- and that is more than a lot of children have in this world. However, while I felt privileged to have been a part of the lives of those two girls, I always felt I couldn’t do what their parents did- that I didn’t have the strength to cope with a disabled child of my own. Years later, when I did get pregnant, a screening test showed our baby had a thick nuchal fold and we were referred for further screening. Without using the word ‘abortion’, the GP told us not to worry, that we could get it ‘fixed’ and not have to deal with it, and that there was a ‘cure’ for Down Syndrome. I was shocked at her ignorance, deeply traumatised by her attitude and never saw her again. Although I am pro-choice, I felt that the assumption the GP made about what was ‘best’ totally took the ‘choice’ out of ‘pro- choice’, and that it is GP attitudes like this that cause the horrific termination rates of DS pregnancies ( where i live in Australia I think it’s actually 95%). I know that my experiences with disabled people shaped my strong belief that disabled people play as an important role in society ( I am also a person of faith, and would have to be in extreme circumstances to opt for am abortion anyway), but I also know that there are a lot of people who find themselves in this situation having had no experience of disability, and who rely on their GP to give them good advice and guidance. My son’s DS diagnosis was confirmed via amnio, a process we were guided through by a wonderful specialist who listened to what we wanted, and encouraged us to continue with testing but in a way that encouraged us in our decision to continue with our pregnancy. I hate the way technology that should be used to monitor the health of these babies has been hijacked to prevent them from being born. Thanks to the additional monitoring we had because of my son’s diagnosis, they were able to pick up a problem late in my pregnancy that meant he had to be delivered early. I do get frustrated when people say they didn’t get testing because it wouldn’t affect their decision to keep the baby – to me it was never about that decision- it was about knowing what was happening and looking after the health of my child, and that’s what it should be about. If only my GP had had some experiences like Shirley she may have acted very differently. I hate to think that she probably has given the same advice to women before and since, and that those women may have listened to her. ( sorry for the novella! a few things I feel strongly about that I haven’t written about before)

  13. says

    I came to your blog via a link posted on the Mommies of Miracles Facebook page–and I’m SO glad that I did! I too have a child with special needs (I have two other children as well). My oldest daughter is a miracle. Like your daughter, she was born premature; she was 23 weeks gestation. So, not only do I feel honored to be her mother, I am truly blessed!

    I enjoyed reading this post and I look forward to following your blog! =)

  14. Jennifer Calvert says

    Absolutely loved this. You voiced exactly how we feel in our home. In my 12 years with my son (CP… and a host of other things), I’ve learned that these kids are mirrors. They will absolutely bring out the best attributes in a basically good person and the worst in an uncaring person. They reveal you in a way that’s more powerful than if they were just, ‘normal’.

  15. says

    I can relate to your story a bit. I am a single mother of 4, both of my son’s have been diagnosed with developmental delays the oldest of course almost 13 now the diagnosis has changed to mental retardation. My other son is only 6, I hate when we go somewhere and my boy’s not understanding they are different form any other child is only trying to be loving or interact. Someone always ask what’s wrong with them or do they have a disability, this breaks my heart. Now my worst fear and concern is that my baby boy the 6 yr old had 3 occurances of physical restraint at school, this is not allowed in the state of Tennessee where I live, but nothing has really been done about it. Now my son due to past abuse from his father thinks the teacher is hurting him. He cries not to go to school, and get’s upset over the smallest things is there anything you can suggest to maybe help calm those fears and for me to help him understand he didn’t do anything wrong so maybe he want be so scared?

    • Andi says

      DO NOT let the school mistreat your child. I can not emphasize that enough. It’s NOT OKAY for the school to restrain him without your consent except in an emergency situation (and only a “true” emergency, at that). Restraint can lead to bodily injury, psychological trauma, and in some cases even death. Restraint is NEVER OKAY if it is used as a form of discipline.

      Is your son able to tell you what’s going on? Do you feel confident in his ability and willingness to tell you what’s happening? If you believe your son is being mistreated – even if the teacher(s) are doing it with the best of intentions – go to the principal. If the administration at the school doesn’t respond to your satisfaction, go to the superintendent and/or school board. If that doesn’t work, raise a ruckus! You said that you are a single mother, but do you have a family member or close friend who can help you advocate for your son if needed? Is the subject of restraint covered in your son’s IEP? If not, I would recommend that you have it modify to include what is or is not okay.

      Unfortunately, I haven’t yet encountered a situation where either of my kids were easily upset about school, so I’m not sure what to tell you. I would encourage you to talk to your pediatrician. He/she may be able to make some recommendations for you and refer you to a specialist if needed.

  16. Francis says

    I find it somewhat compelling that everyone else who is considered a minority has protection for their rights, almost to a fault, yet the most innocent and beautiful people in our world remain exposed to the thoughtlessness and ignorance of society. Shielded only by the loved ones circled around them trying desperately to protect that innocence and beauty and maintain an environment wherein they can have the best life can offer. I have always believed that words were words and if used well they only pertain to the subject in the sentence. To me the R word pertains to those individuals who do not live up to their potential or work toward it to any degree… well that doesn’t pertain to my little girl (who has DS) she gets in and does whatever she puts her mind to doing. I can’t even say that about myself! I actually hate the word handicapped more than the R word because it feels like a ceiling has been placed in the stratosphere of achievement, like she only allowed to rise as high as someone else thinks she should. There really are few things that she will not achieve, and the wonderful thing is she will get there without loosing her innocence and ability to love unconditionally, in my opinion THAT is real accomplishment :)

    • Andi says

      Excellent point, Francis. It would seem that the ones among us who are least able to defend themselves would be the ones most defended. Sadly, it is not.

  17. Elizabeth Buist says

    THANK YOU. You took my words out of my mouth. Both of my children have Cystic Fibrosis and I continually tell people, it’s not the lifestyle that’s frustrating or disheartening, it’s dealing with everyone else. My husband and I take one day at a time and every day we wake up is a miracle. I am blessed to have close friends that also have children with special needs, because we can vent and lean on each other. We mostly marvel at how most people in this world take each breath for granted.

    God Bless you and your beautiful children!

    Keep on the sunny side of life!

    Liz Buist

  18. says

    Andi your words are so valuable. I am a teacher in a Unit for students with intellectual disabilities in Adelaide, Australia. I say it this with significance because these classes are always referred to as “Disability Units” and I am always conscious of how powerful language is. I want my students to be identified as students first and not their disability. I have just written on my blog about the frustration of reporting for my students and I was trying to find a parent who has clearly expressed the frustrations of being reminded about their child’s limitations. Instead I found you!

    Thank you

  19. says

    Hi Andi. I love this post. My three year-old son has developmental delays, SPD and a severe speech and language delay. I completely relate to your words that what’s inside your house doesn’t make you sad – it’s what’s outside of your house that does. I wish people would be able to see past special needs and see the beauty of the child. I wish that people would accept my son for who he is without me having to explain why he’s acting “weird.” This post lifted me up a lot. It’s so wonderful that you’re writing about this. Maybe, someday, if enough of us shout out to the world about how amazing our special needs kids are, people will get it. Thanks for sharing.

  20. says

    Hi,

    I hope you will excuse me for this comment but I have started a bookmarking site for parents of children with disabilities. You can submit any links you like that are news to fellow parents. The site will also automatically bookmark news and new blog posts from relevant bloggers.

    If you would like your blog added to the auto bookmarking, just email me. I just need your RSS feed. For wordpress sites it is [your domain name name]/feed.

    There is also a twitter account that will auto tweet all the posts and news that is bookmarked. Follow @forspecialneeds. if you are interested.

    Many thanks

    Duncan
    (Dad to a child with Dravet Syndrome)

    • Andi says

      Hi, Duncan! My RSS feed is linked under the icon on the top of the left sidebar. If you opt to use any of my blog posts, I do require that you credit me and provide a link back to the original location of the post (I would prefer that you only print an excerpt and provide a link to click through to read the full post).