A Letter to Mamas Parenting Children with Disabilities

Coffee cup 2

Dear Mama of children with disabilities,

I’ve read your letters and blog posts to us ‘regular’ mamas, we’ve had conversations, I’m privileged to know many of you on Facebook and in real life. You’ve candidly shared your thoughts with me about what it’s like to walk in your shoes and now I’d like to take a moment to share my thoughts with you.

I don’t understand. You know this of course. How could I, the mom of two very typical children, understand what it’s like to raise children you spend hours worrying about, defending, and advocating for. I can’t. I wish I could, I have great compassion and admiration for you, but we all know I’ve never walked in your shoes.

With that said the next time one of us ‘typical’ mamas says something rude, or thoughtless, I hope you will understand that in most cases it was completely accidental. We probably realized the moment we said the awkward comment  that it was awkward. We may have stewed over it on the drive home. Will you please give us grace and forgive us? We’re sorry. Of course some people are just mean, after truly ugly comments we realize you are sensitive to our thoughtless comments and it’s easy to react strongly. Instead of being offended I hope you will graciously correct us and explain why our comments bothered you.

I’m aware I don’t understand what it’s like to wrestle extra gear everywhere I go, or defend a child from stares or rude comments. Sometimes I don’t know how to respond to your child’s behavior. I’m not judging them, or you, if a situation occurs that is loud or different than I’m use to, most likely I’m just not sure how to respond. I want you to know that. I would never knowingly add to your discomfort or the challenges you face. If your child shrieks in public or throws something should I excuse myself and give you space, should I offer to help, should I act like nothing happened, should I say something to the people staring? I just don’t know. I hope you’ll understand and tell me what you need, and I’ll try to ask and give you an opportunity to express your needs.

I have a confession to make. It may seem strange to you and I certainly hope you won’t be offended. Not only do I admire you, learn a lot from you, pray for you, but once in a while I’m just a bit jealous of you. (Don’t laugh, hear me out!) Children with Down syndrome touch my heart. I know they aren’t angels or anything other than people. I know they pitch fits and argue just like any other child. But there is something so special and endearing about many of their qualities, you know what I’m talking about. And I think that’s true of lot’s of children and adults with unique challenges. There is often a very sweet and humble dependence their hearts have developed, something profound and beautiful that is precious to be around. I know it is not a treat to be peed on regularly, to be unable to go out with your spouse whenever you want, to be burdened with huge medical bills, or watch your child suffer. But I’ve seen the bond that can form between a parent and child with disability, I know that there is a holy interaction that happens and requires a special grace from God. Sometimes I feel like an outsider to an elite mommy’s club.

For a few years now I’ve wanted to adopt a child with a disability, but God has led me in another direction. I’ve traveled twice to Serbia to visit a mental institution to learn more about their needs and hopefully encourage them. I know my path is probably different than adoption. My heart is being shaped to bring support to families who have children with disability and provide opportunity for people with special challenges to live full and safe lives. So I may never join your ranks, and that’s okay.

But I did want to share my heart with you. I know you need help and encouragement and sometimes I don’t know how to give it. Often I want to help, to understand, but I’m afraid I’m making things worse. I’m not always sure how to approach you or talk about your child’s particular needs or challenges. But I hope you’ll hear my heart when I say that even if I don’t know how, I want to. I hope we can meet half way and have a conversation, that we can give each other grace and ask each other questions and not assume things.

I want you to know that I see you. When you’re tired and at the end of your rope, when you are astonished by the wonder of your child, when you are celebrating a hard won victory, when you are standing between your child and a critical world, I see you. Maybe your kids aren’t angels and you aren’t a superhero, but once in a while I catch a glimpse of your red cape and death defying feats, and I applaud you! I want to take the opportunity to encourage you and make your life easier and never add to your burden. I hope we can become allies. I just have one request, will you help me learn how?


Your biggest fan

{Just a quick note: I hadn’t expected such a large response to my little letter, I’m humbled. I wrote the letter to mamas because that’s generally my blog audience and platform. In no way would I want to exclude you amazing dads.  I am equally inspired by your commitment and love!}


138 thoughts on “A Letter to Mamas Parenting Children with Disabilities

  1. Thank you for taking the time to share your thoughts. Beautifully written.{{hugs}} Scott is 23 and he has a dual-diagnosis of Down Syndrome and Autism (DS-ASD) and is non-verbal. When I see someone staring or pointing (child or adult) I introduce myself and ask them if they would like to ask me a question or do they need help with something. Your words reflect who you are as a person. Thank You!!

  2. I am a Grandmother of a child with special needs, and let me tell you how special he is in so many ways. He has a heart of compassion, so profound and beautiful. My daughter has a group of parents with Special Needs on Face Book!

  3. Thank you for your words! I’m a mum of two, the older one (4 years-old) has DS. She’s still young and I’m still a young “special” mum, but I completely understand what you feel. Firstly because before to have my daughter, I was like you and I was always a bit confused on how to behave with “differences”. I’m still learning, because if it’s easy to act naturally with your own child, I’m still not sure how to act with other disabled persons. Because I would like them to feel that I’m not judging them, that I consider them as any other person, but sometimes what we do or say is perceived in another way.
    For this reason I think that there is not a recipe that is good for everyone, because every child and every mum are different and then the same words could cause a different reaction.
    I liked your message, when you say to understand and forgive your eventually thoughtless comment and when you advice us not to get mad or offended, but instead to point out why we didn’t like what you said and explain our view.
    I personally don’t notice others staring or considering Luna in a mean way, maybe because I have a positive attitude towards DS and I consider my daughter as a child, like her brother.
    If someone looks at us I think it’s because my daughter is beautiful, or because they see that she has DS, but she’s so smiling and pretty that they’re curious. I don’t see it as a bad thing.
    I would like to give an advice to all “special” mums. The best way to make other people feel confortable on approaching you is to be natural and talk freely about your child disability, if they see that you’re open to talk about that, then they will be more relaxed and they will maybe ask you questions if they don’t understand something.

  4. Building the bridge between the neurotypical parenting world and the less neurotypical world (in my case, autistic parenting world) HAS to happen. With stats at 1 in 88 children, we are all affected by autism and many other brain differences. If neurotypcial families think “this doesn’t affect me” and maintain a stance of feeling pity for less NT families, things will never improve because your child attends school with many children who are mainstreamed and need better understanding. Often what occurs is that NT parents/children are inadvertently pitted against one another, from playground politics (“that kid’s being mean to my kid!”) to teachers or school staff not understanding the child in which rumors begin, or the child is expected to behave like the NT kids and when he/she does not meet those standards as swiftly they are consequenced more often than NT kids, then what messages do the NT children begin to receive about the different child? My daughter was quickly labeled “bad” by her peers when she began kindergarten and her anxiety increased 10-fold! It’s a daily, viscous cycle for non-NT parents to manage (btw, I have one autistic child and one NT child–I see the differences very clearly and LIVE them!). As much as I appreciate your effort and sentiment, I’d rather hear less “gee I don’t get this, how could I?” and more “WHAT CAN I DO TO APPEAR LESS JUDGMENTAL?” or “WHAT CAN I ASK TO LEARN MORE?” I get that you’re not sure what to say or how to react…in that case, ASK. If the parent is shut-down and can’t begin a dialogue, that’s their problem and an utter disservice to their child. Children need to be taught early about their difference. These people who refuse to talk about their child’s diagnosis or barely acknowledge it, THEY ARE WRONG. For the ones who say “I don’t want a label”? Get off your asses, Special Needs Parents, and live in reality! Your child FEELS different and KNOWS they are different…wouldn’t it be better if they were taught early about their difference so they could accept, embrace and LOVE it by adulthood? I think so. But for the most part, I think many special needs parents prefer to be approached with compassion, are eager to explain and educate others, are willing to embrace the help and bridge the gaps between these two parenting worlds. Just start a simple dialogue with a tender smile so the parents get the sense you are making a genuine effort, then GO OUT THERE AND TEACH OTHERS. Keep the ball rolling. We get criticism almost everywhere we go; our children start out with tons of friends then are suddenly not invited to birthday parties any longer. It’s sad and exhausting and unless you are wealthy, the respite and resources are limited. So start a dialogue and thank you for this written effort…but maybe you could interview some special needs families and ask them what they need and put those specifics out there because, to be honest, I’m kind of left hanging on this one. Not sure as a special needs parent what I’m suppose to do with this?? Thank for the sentiment, the concern, but what are NT families going to start doing to get their heads out of the sand and live in a world that embraces differences, because we are ALL impacted?

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  6. I can relate to both sides of this. I have three children, the youngest has Down Syndrome. Before he was born it was difficult to relate to people who had children with disabilities. It’s like they were an elite club and you feared saying or doing the wrong thing. I’ve seen some pretty unforgiving posts of people who have been completely offended by some ignorant comments or behavior. But that’s just it, they are ignorant to your situation and feelings, and you shouldn’t expect them to know what it’s like to walk in your shoes. After my son was born my perspective has changed, but I try not to get offended when people say things that seem offensive but don’t come from a “bad place”. I think the best thing to do is be as open to their perspective as much as I wish they were open to mine. I put myself back in their shoes, and try to relate to how they must feel in the situation, and try not to react negatively when their reaction is not the same as mine would be.

  7. I’m really happy that someone is honest and curious. I was one of those Moms at one time. Now I’m on the other side and I wouldn’t change anything except the health issues. My Son that has DS is the best thing that has EVER happened to me! The stares we get do get annoying at times but I can handle that. Some “normal” kids get stares for being bad, loud or disobedient and our kids should only be viewed like them and nothing more. What I cannot stand are rude stares and whispering! Smiles are welcome and saying Hi to my Son makes me Happy and makes him Happy as well. Sympathy is not ok because there is nothing to be sorry about. Questions are so very welcome because at one time I had no clue about DS so spreading awareness is now my job! Yes…our kids look a bit different and are a little slower but…they are just kids too. People tend to forget that important thing about them! They have way more Love than anybody in the world! They also get their feelings hurt! Just treat them like you would treat someone you Love and you have it 🙂 Same with the parents. Theres one thing people need to know that’s important! Treat our kids bad and I can assure you…it won’t be nice. We belong to them and you hurt us worse when you hurt them. With all of that said…I pray this helps 🙂 Oh…one more thing. The Angel thing. I’m not so sure they are not Angels♥

  8. So kind of you to share your perspective and this will stick with me. I walk around with a chip on my shoulder. I know it creates a special bond. You are right! And that is a blessing! And I never thought of it like that before, that another mother of typically developing children could be watching from the sidelines and admiring that bond. So, kudos to you for writing this! Thank you for all that you said. And I will approach situations differently. Thank you!

  9. Thank you. I have a child with Down syndrome, and he is the greatest thing I never knew I wanted. I want you to know that I appreciate you speaking of people as having challenges and NOT disabilities. I can tell you that I have been encountered with well-intending people and at times it has made me uncomfortable. I have learned to ALWAYS use people first language. I get heated when people tell me they love “downs babies”. I realize that they mean well, but I can’t help but gently smile and say, “Me too, but he isn’t a downs baby. He is a baby boy with Down syndrome, and he is the light of our lives.” I have to remind myself that up until 2 1/2 years ago, I had no idea what DS was. I have received a number of “I am sorry.” responses as well. I am not a bit sorry, and I couldn’t love him more. If Max had three heads that would just make him three times cuter. I have and always will focus on strengths and abilities and because of that, my son will always succeed. I am going to teach him to be proud of who he is. I think that the best thing a person who doesn’t understand can do is realize that these kids, regardless of their challenge, are kids. They are just like any other kid who gets mad, stubborn, and throws fits. React the same way you would to any kid, and you will be fine. We are all God’s children and we all want love and respect. Follow the “Golden Rule” and you will never lose.

  10. Thank you so much for your sweet refreshing letter. It touched me a the depth of my soul. I am the proud mother of a teenaged daughter with CP. Everything you said is true. It is is hard some days, other days it is phenomenal. I feel blessed beyoind measure to have this difficult challenge because with it comes great fullfillment and great love. Thank you for “getting it” and welcome to the club! That’s all it takes to belong, to have a heart for our position, and you certainly do!! I appreciate you.

  11. I don’t even know where to start, Beck. Thanks for putting yourself out there. You’re right, you don’t know what it is like to have a child with special needs, but I do love your heart and willingness to understand. The reality is that you may never know what it’s like, this side of heaven, unless you have a child of your own with special needs, plain and simple. Does that make you less of a “special mommy?” Absolutely not. Every mommy is special. 🙂 You have a compassionate heart. Just because you don’t understand doesn’t mean you can’t make a difference and bridge the gap. I can honestly say that I can relate to all of the replies, even the not so nice ones. Having four children, two of which have cerebral palsy (Marinesco Sjogrens Syndrome), has placed Mark and I in a unique and sometimes unwanted position of brokenness before our Lord. I speak to you as a sister in Christ, and therefore, I “get” what you mean when you say you are a little jealous. Our walk with Jesus has been one of trust and complete abandonment to our own wants and desires when it comes to our boys and what we want for ourselves. That’s not to say that he hasn’t blessed us with joy, happiness and a fulfilled life. There have been times…more than I would like to admit, that I have been angry with God and that’s okay. We are the clay and He is the potter. He is sovereign. We would have never known the depth of His love and compassion toward us if he had not blessed us with our sons. We don’t expect everyone to understand or even agree, and that’s okay too. As far as making a difference, I would like to speak from personal experience concerning the Church. Special needs families are an integral part of the Body of Christ that is missing in most congregations. We are a large unreached people group. Joni Eareckson Tada suggests that at least 10% of the U.S. population would fall into the special needs group. As we look around our churches, do we see that 10%? Most people that are unaffected by disabilities have no idea how much work it is to get those with special needs to church. In the parable of the banquet in Luke 14, the master tells his servant to go and bring in (notice it does not say “invite”) the poor and crippled and blind and lame. When there’s still room at the banquet, he tells his servant, basically – “look harder and compel them to come in.” Two key points – first, the direction to bring them in comes from the top. The pastor and elders must develop a heart of compassion for those with special needs. Second, the banquet was already prepared before they arrived. Lay the ground work and look at this as a missions outreach. If you need to make changes to the physical property of the church, do it. But, make sure you are getting as close as possible to ADA compliance. If you need to train people to work with special needs, invest the time and money required. Meet with the parents and others with special needs and ask them what their specific needs and wants might be. Like you said, many parents of special needs kids feel alone in the struggle. The biggest part of a mission to special needs may not even take place within the walls of the church building. It may be to get involved in their world and really get to know where they are at. There are a lot of ‘boots on the ground,’ practical ways to minister.

  12. Today is such a day. I am at the end of my rope. Thank you for lifting me up. I will keep in mind that you (woman, man, child), when staring at my child don’t want to be rude.

  13. This put me in tears! You are amazing. You do not know how much this means to special needs mama every where. No matter what our diagnosis sometimes we wish we could hear this from our ‘normal’ friends. We wish they would say some of the things you are saying. So glad you are getting the praise you DESERVE for writing this. I applaud that you have your eyes open and now we do too:)

  14. This is very sweet…I am glad to hear someone say that they dont understand but want too. I have a son with an extremely rare genetic disorder and he is my first child (Im 26)…and I cannot tell you how many times people just offer their thoughts without thinking about what they are saying. This touched my heart.

  15. Thank you so much for a thoughtful and thought provoking letter, as a “special” mom (I think all moms are special in their own way) I appreciate your caring point of view. I wanted thank you for helping me to see the other side as I have had a few instances, unfortunately within my own family, of awkward moments that I had sort of been miffed by but now I think I see them a little more clearly. One moment in particular stands out when a family member of mine was discussing her daughter’s upcoming birthday party at some sort of indoor gymnasium and she looked at me and said, “I didn’t invite Renee to the party because I know she can’t do those things.” Ouch, well thanks for reminding me that I have a handicapped child I had actually forgotten for a nanosecond! I was sort of stunned by her ham handed comment but tried to let it go, but given the perspective of time I am willing to open my heart and mind enough to allow that she perhaps did not know best how to phrase what she wanted to say and that it is a tough situation on both sides. We are all learning as we go and we all do the best we can on any given day.

  16. I will say as a mother of a child with multiple challenges, sometimes my response to your questions will depend on the day. The day may hold a lot of difficulties and find me in a new stage of mourning and grief, or it may be a day of celebration of victory. If we honestly journey together, we will hit the bumps and the celebrations together. I will give you grace for the awkward moments, and I will need you to give me grace for reactions that seem inconsistent from one day to the next. I appreciate your vulnerability and willingness to walk into my world. Beautiful chaos is where we live. We laugh and cry within the same breath. We celebrate and struggle within the same minute. Life is fragile and unpredictable, and we are learning to give and receive grace simultaneously. To give and receive love simultaneously. And above all to be sustained and renewed by the One who says this child is fearfully and wonderfully made.

  17. Wow so powerful. Even for me as a special needs mom. My daughter will be five in December, she has cerebral palsy that comes with many other dx. I read your letter as if a family member or a friend wrote it to me. I’m in tears. I’m always the person who sees both sides to a story. The past few months has been hardest in dealing with my daughters health and I’ve shut everyone out. Nothing negative, but not wanting to be bothered. I think most of the reasoning is because they just don’t understand and never will. Not that I want anyone to ever have to experience this heartache, it definitely not for everyone. But after a few days go by and then a week, I kinda want someone to reach out. But I’ve shut them down not answering the phone text or emails. Just not wanting to waste my time and energy trying to explain why she has to get this surgery or that she’s in the hospital again. Or lying when I get asked “how is Paige”? And I answer “she’s ok” because every time I even think of what’s going on I feel as though I’m losing it. So I just don’t answer for the fear of those questions. And even after I explain what’s going on, it seems like a waste of breathe because they still have no clue. I’m never upset with any of my family/friends I’m just handling what I have to the easiest way that I can. And every special needs parent knows that we don’t often get the easy way out so when you do-you take advantage. Even with all that said I truly respect you as a friend/family for writing this letter it has touched my heart and I sure the hearts of other special moms. Because after all it’s always two sides to a story. God bless

  18. This was so touching! I am the mom of 2 beautiful, mostly grown, daughters and a son who has autism. I know my son’s funny, sweet personality but in public what most people see are his strange sounds or behaviors. It attracts many stares which I have learned to accept most of the time as curiosity. I try to take the opportunity to interact with him in ways I know will show his endearing spirit so that people can see the depth of his character.
    For ideas on how to help parents of children with autism (or any other special need for that matter), Bec Oakley has a great downloadable booklet titled, “The Awesomely Big List of Ways to Help Parents of Autistic Kids” on her blog here. http://www.snagglebox.com/p/useful-stuff.html

  19. As the mother of two medically complex kids, I want to thank you. Not just for writing this, but for understanding why moms of special needs kids sometimes come across, and for extending your hand to us despite our occasional brusqueness. But mostly, thank you for noticing. Sometimes just having our struggles noticed is all that we need to struggle for just a little bit longer until the next short break.

  20. If only one Mothers heart is touched with what you have shared, it is proof positive that there is HOPE. I was humbled by your blog and it brought tears of joy that You support the efforts made by many many parents who face these challenges. Thank you from the bottom of my heart, and God’s Grace is the truth of the day. I am the mother of a 30 year old daughter who is non-verbal and has 22Q13 Phelan McDermid Syndrome she has brought to my life the perfect example of determination, acceptance, unconditional love, and non-judgementalism,, I often refer to her as God’s perfect spirit. May your day be blessed!

  21. As a parent of a child with di george syndrome , whos had open heart surgery just to stay alive etc , I have to say I love this letter ! and the main reason is because you have had the guts to dive on in and write it ..We dont want people to shy away , we want people to ask away if they want to know anything .Yes Ive almost had to watch my child die from it and its scary and it will always be there and we dont even know if she has a future ..but either way we dont want people to shy away from it either .As parents we wont and dont break , and at the end of the day we are all parents and its our job ..so Thank You !! I wish all people were just like you xxxx

  22. Hello! I agree with many of the comments above….I love a good conversation…and I always believe in and need a Good Cry!!!! I am the proud mother of 4 kids…Jared,28yrs.;Jacob,26yrs;Jasmine,22yrs; and Jesse,who is 18 years old,with Cerebral Palsy and a seizure disorder. I think there are many interesting perspectives to discuss and read and it is helpful for everyone to do so. Personally, I love to share about Jesse and believe he came to be a teacher in Life. I also understand how it is difficult to share and learn and relate without actually ‘walking’ in another person’s shoes…but we can try with empathy and love and support for each other.I have been inspired to write a song on the subject of ‘walking in another’s shoes’.Maybe someday you will hear it or read it! Have a Blessed Day,Tamara

  23. I find as a mum and aunty of both Specal and normal children I will just go say hi to a mum and start by saying I have a child with. They them open up. But if u won’t to know ask. I love lowing other a chance to understand

  24. What a beautiful letter! I am the fortunate mother of 14 year old identical twin boys with Down Syndrome. My life is so wonderful! I would not change one thing. I’m honored to have my boys. They are a gift.
    I loved your letter, and appreciate the sharing of your heart.

  25. Thank you so much for your sweet, kind words. I am the mother to a son with mr who is 28 yrs old. It has been the hardest most challenging yet rewarding job i could ever had. If you have ever watched “Rainman” that is my son in a lot of ways. It is great for anyone to aknowledge our challenges or offer a hand even if you are not asked to help. The stares are very rude and maddening. This is a human being with feelings just like us. Showing a smile even helps in those akward tense moments. I do believe puts these individuals on earth and in our lives for a reason and purpose. We should all learn lessons of kindness and pure love from them. I am a more stressed yet blessed Mom. I often feel like a super hero that has lost a lot of sleep. GOD is merciful and gives me steam for each new day.

  26. I am an overprotective big sister who has always felt like the other mom to my 32 yr old special needs sister. However, I feel compelled to share with you the single greatest truth that God, in an incredible encounter during prayer one day revealed to me. For those who know the Lord this will not seem outrageous as our love relationship with Him is the only thing on earth that matters. But as I prayed one day years ago the Lord by His Spirit took me for a moment to see heaven in a tim I knew to be years in the future when all our lives on earth were said and done. A beautiful woman walked up to me on the street and began speaking to me. I did not recignize her physically but I instantly knew her as my sister – in her right and full mind and in the perfected body that was in the Father’s heart from the beginning only to have been manipulated in the spiritual perversion of a sinful world that he had given to be stewarded by man. She told me “thank you for always being such a great big sister…for your love and kindness in your care for me and speaking Christ into my life.” I wept. And as I came to myself out of that moment in prayer the Father spoke to me and said – ” The spirit I have placed in every human is whole and complete even if their body or mind confines them. Always speak to the wholeness of my own Spirit within a person and show them the same love, honor and respect as anyone else – for they all carry My life inside them.”

  27. Dear “biggest fan”
    I’ m deeply touched by your letter – actually I’m in tears right now!
    I’m the proud mother of 4 children. My no 2, Karl Emil 11 ys, has Down syndrome. We live in Denmark, but even though you can’t physically see us, I’ve never felt more “seen”!
    In Denmark we don’t have to pay extra medical bills – it’s all payed up front in our tax system. But otherwise we face the same struggles as other “special needs parents”. What I find most difficult to explain is vulnabillity (not spelled correct – hope you get it) in having such strong feelings in two different directions: I love my child so deeply and at the same time have to fight so much. Reading your letter I felt, that you saw exactly that! Thank you so much! 🙏❤️

  28. Thank you so much for this! I’ve shared it with ~1,500 people. It NEEDS to be out in the universe! … Beck, I see you, too (and a peep of a cape in your coat closet)!!! 🙂

  29. Thank you very much. I have a son who is 3 1/2 years and was born with Down syndrome. I have a confession to make. When I see you parents of typical children and your child is shrieking in public, having a meltdown, or just being a jerk, I am unsure of what to do. Do I offer to help? Do I pretend not to notice? Do I offer my child as an example to yours? It is a dilemma. I try my best just to treat you like a person and to treat your child like a person. It can be hard, though, so please don’t take offense.

  30. Pingback: Trust is a Journey | The Accidental Mama

  31. Gosh, I’m the mother of 2 boys with Ds and they haven’t peed on me since they were babies. They also don’t shriek in public or require any extra gear. Maybe some do, I don’t know. I appreciate your heart and your beautiful quest. If you ask 100 different parents what they need, you’ll get 100 different answers. 😉 My goal is: “I’m just like you and you are just like me!” Thank you for your interest in our kiddos. I shared this on Facebook and sent you a friend request.

    • Hi Heather, thanks for sharing your perspective. So true that each parent has different experiences and different needs. I wrote this post with lots of different disabilities in mind it was just shared more heavily in the Down syndrome community. Learning how to relate to each other as people, regardless of our kids needs or abilities is an ongoing journey! I would love for you to connect with me on my facebook page https://www.facebook.com/BeckGambill.TheAccidentalMama

  32. So beautifully written. Have read it through several times these past couple of weeks and it really speaks to my heart each time.
    Thank you xx

  33. Until I had my own daughter with disabilities, I did not know that children with significant disabilities are being sent to separate schools. While many parents work to have their children included in typical (neighborhood) schools–the parents that want their children included often need to work tirelessly to maintain this placement. Tonight I came across the (1951) Brown v. Board of Education ruling that declared “separate but equal” is not possible. I thought about how many children with disabilities (and their families) have experienced what is described here:
    As directed by the NAACP leadership, the parents each attempted to enroll their children in the closest neighborhood school in the fall of 1951. They were each refused enrollment and directed to the segregated schools. Linda Brown Thompson later recalled the experience in a 2004 PBS documentary:
    . . . well. like I say, we lived in an integrated neighborhood and I had all of these playmates of different nationalities. And so when I found out that day that I might be able to go to their school, I was just thrilled, you know. And I remember walking over to Sumner school with my dad that day and going up the steps of the school and the school looked so big to a smaller child. And I remember going inside and my dad spoke with someone and then he went into the inner office with the principal and they left me out . . . to sit outside with the secretary. And while he was in the inner office, I could hear voices and hear his voice raised, you know, as the conversation went on. And then he immediately came out of the office, took me by the hand and we walked home from the school. I just couldn’t understand what was happening because I was so sure that I was going to go to school with Mona and Guinevere, Wanda, and all of my playmates.[9]

  34. Thank you for your note. Now take your sentiments out into the world and use them. Talk to us face to face when you see us. Talk to us the way you would any other parent. That will be the best way to bridge any discomfort you have with us, and any discomfort we have with you. Personally, I don’t want to be worshipped. I don’t want to be called a hero. All I want is for you to treat me as you would any other parent.

  35. Here’s a letter back at ya:

    Moms, your disdain for each other is awful. Your friendships with each other is beyond fake. Your husbands are checked out – they hate their jobs but they hate their home lives even more. Nannies are nothing more than babysitters they found on care or sitter city. You’re so preoccupied with keeping up image and status you fail your kids daily. No one cares that your handbag is Gucci. No one cares you live in a McMansion with no yard. No one cares that you went to Brazil and took your bratty kids with you.

    Kids with special needs are here for one DIVINE reason – they’re here to teach us to accept others. Because within every race, nationality, and segment of society there are kids who have down syndrome, autism, and other mental maladies. You see, it doesn’t matter if your white, asian, black, hispanic or muslim, special needs knows no bounds.

    Want to do something really awesome: SEND YOUR KIDS TO A CAMP THAT INCLUDES EVERYONE! You probably won’t because it scares the hell out of you that your kid might actually not make friends that look like YOU!

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