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 Β 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?

Sincerely,

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. Β I am equally inspired by your commitment and love!}

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

    • I love this post. I’m one of Kathryn’s friends and I’ve been on the “other side” of it with you, saying things, inserting my foot in my mouth, yet still trying to be supportive and learn how to be a good friend. I’ve made a lot of mistakes, but thankfully a lot of the special-needs moms I’ve met have been very gracious with me in the process. Thank you so much for approaching this subject with honesty and graciousness!

      • Thank you Aprille! I think if more moms raising kids with special needs had loving supportive friends their lives would be just a bit easier. Even if we don’t always get it right I’m all for continuing to try to be that friend!

    • It must be a lonely job sometimes. Of course I can’t understand what your life is like as you love and care for your son, but I certainly can appreciate and cheer for you! Thanks for taking the time to comment Kathryn!

  1. Oh WOW!!!!!! This really hit home for me as I have had to have some really tough conversations with people lately…about their comments and/or actions!!! Feels sooooo good to have someone just say….”I see you!” It practically brought me to my knees!!! Raising my son (Joey, 8 y.o.) who happens to have Down Syndrome, has been the most amazing and toughest job in the world!!! I didn’t know motherhood could be so hard & so rewarding at the same time! I also have 2 beautiful girls…I’m a lucky Momma!!! ❀ Thank you so much for your kind words and I will try to be a better teacher to Momma's who don't know exactly what it's like…but still want to help & support!!!

    • Collen, thank you for those words! Building a bridge is better than staging a standoff, harder but better I think! Can’t tell you how glad I am that I could encourage you for just a moment in your big beautiful task of raising your family!

  2. Great post! Read this via Ellen Stumbo. I have a daughter with Down syndrome who is considered “high-functioning.” Yet I’ve completely adjusted my life to her needs. That’s a book in itself. But I appreciate your candor. Being a parent of a child with special needs is very lonely and isolating. I don’t expert everyone to understand when my daughter has a meltdown during a transition or wants to be independent (she is 11). Being a pre-teen with pre-teen desires and motives in the body of a girl with Down syndrome is frustrating for her. Thanks for attempting or even wanting to “get it.” πŸ˜€

    • I’ve seen the funny dance moms sometimes do of trying to communicate about things they don’t understand but want to. I think the more friends and support we have the easier our job of being moms, especially if your family faces unique challenges. Thanks for sharing your thoughts!

  3. Can I say Thank you?! What a great post. We adopted our daughter because of the same things you mention, we wanted to be part of the club! Fast forward and three years later it remains the hardest, yet most beautiful thing I’ve ever experienced. Her name happens to be Grace, I’ve often commented about grace with a little G and a Big G. πŸ™‚ we all need it.

  4. Awesome post. I often remind myself that it wasn’t that long ago that I didn’t understand….didn’t have the experience base that I have now. I sometimes cringe at the awkward things I said back then when I think about them now. And my friends who began this journey before I did? Each and every one of them showed me grace. So now when I’m sometimes on the receiving end of the awkward, I try to extend that same grace. I’m always happy to answer any honest question and explain any honest interest. It would seem as though parenting a medically fragile kid with special needs no longer offers me the time to be offended anymore. It’s mostly legislators and a few school officials I have issues with these days. ;D

  5. This was so beaitiful and brought tears to my eyes. I wish everybody felt that way. I am a proud mommy to two special needs boys. A four year old with epilepsy learnin disability, and a three yr old with complete agenesis of the corpus callosum plagiochyply gerd septo optic dysplasia non verbal non mobile still in diapers has already had 2 surgeries more expected but both r happy and I will do everything in my power to keep them that way. Sometimes we need help and sometimes quite time as we may need to explain just ask us if I have questions most of the time we r use to it god bless u

  6. Thank you, from the bottom of my heart. My son is five and Down Syndrome and is the best part of my life. It is encouraging and uplifting to read a positive outside perspective. Before I had my son I was guilty of everything everyone had done to hurt me after I had him. This post reminded me of that fact…that a mere six years ago I was ignorant and insensitive…it’s a lesson that I need to keep in order to stay humble.

    • Shanna, thank you for sharing your thoughts. Sometimes it looks like there are dividing lines but really in life there is a lot of overlap isn’t there. I think open conversations remind us of what we have in common and we begin to lose sight of what’s different.

  7. What a wonderful letter…thank you for posting. I am an Older (late 40’s) single mom of a beautiful 7 year old boy. I am very protective of my little nugget who has severe Epilepsy and a diagnoses of Spastic Quadriplegic Cerebral Palsy.
    I think my one BIG thing is ASK….. If you are wanting to know about my son I would never react adversely if asked genuinely πŸ™‚ This little boy is the absolute light and love of my life and to me…he’s perfect.

    • “I would never react adversely if asked genuinely”– yes, yes! I think so very often, working with our kiddos truly depends on the moment; it’s hard to say at any time what we’re going to need, because oftentimes we have to change our tactics on a dime. As I have learned more about my son’s disabilities, which are invisible and therefore make him subject to high expectations, I’ve learned to not take the comments of parents of neuro-typical kids so personally. I just get on with what I need to do. But my goodness, when another mama says “Here, I’ll grab your purse” when I suddenly have to chase my boy as he runs out of the park? P r i c e l e s s. (Even better was the time the mama chased after him _for_ me, because I couldn’t πŸ˜‰ The only thing I’d add? Please, if you ask, just listen. Don’t feel as though you must help fix it– because honestly, most of us have already tried whatever it is you’re suggesting, and the last thing we want to feel is defensive, because we’re hard enough on ourselves already. Rather, listen, and just BE with us in the un-fixable-ness of it all, agree that it’s hard, offer something positive like, “you handled that really well”. Human moments are hard to come by, but when they happen with strangers? Ah, what a gift!

      • Thanks for sharing your perspective and what encourages your heart. I think there are few gifts greater than being willing to enter in and just be in someone else’s very real, sometimes messy, life.

  8. Bless you!! This is a wonderful, honest, thoughtful letter and I, as a mom to a child with Down syndrome, thank you for your perspective, honesty, and your willingness to try to understand. I’d give you a hug if I could. πŸ™‚

  9. Thank you so much for your article. Many of my friends have told me they don’t know how I do it, and my response to them is always the same, “If you were in my shoes, you’d do exactly the same thing”. My son is 8 and is cognitively impaired (moderate to severe), has Sensory Processing Disorder, Hypotonia, Expressive Speech Disorder and Autonomic Dysfunction. Every moment of every day is a rollercoaster with him, and sometimes it takes every ounce of strength we have just to make it to bedtime; however, when we hit those peaks, it is sheer joy being with him and receiving all his love and laughter.

  10. Thank you!!! I have a son w/Down syndrome, and I get so embarrassed by and irritated at other moms who have children w/disabilities for always being so “us against them.” It bothers me when they are so quick to jump on every supposedly cruel comment or sideways glance. I remember all-too-well what it’s like to NOT KNOW. To not understand, and to say things w/out meaning to be cruel. I think we could all learn a lot by trying to be more understanding, no matter what “side” you’re on.

    • I so agree Angela, thanks for sharing your thoughts! I’ve found myself staring at families in public with their child with Down syndrome and I’ve hoped they haven’t been offended, because really I’m watching them with awe and appreciation.

  11. Thank you for this beautifully written post. I am the mother of a 19 yr old with Asperger’s. Sometimes when they’re as high functioning as my son is, it’s that much more difficult when they melt down or act awkwardly in public because no one can tell by looking at him that he has a disability. We have fought hard to get him to where he is today…time, money, going against “conventional medicine and wisdom” and the successes have been great. But we still encounter daily the fact that he’s “different” and it hurts. I am so grateful to my friends who tell me, “I don’t know what to say, but how can I help? What do you need? Do you just want to vent?” That means the WORLD to me. More than they will ever know. Thank you again for a beautifully written post.

  12. Thank you for that article!! Brought tears to my eyes! Thank u for wanting to learn more about special needs children and their moms. My daughter has CP and Retractive Epilepsy. She has has 5 eye surgeries and brain surgery. Rebecca is such a happy girl and doesnt know the meaning of the word quit, and i have truly learned from her. Again,thank you for a beautiful letter!!

  13. And it is such a lonely journey at times. The life is different…in more ways than one can explain without hyperventilating. Your outreach helps put a voice to the bridge between the worlds we live in and that is so very appreciated. Imagine everyday that you are the only person that can understand your child, a world in which everyone else stares at YOUR BABY, friends that are scared and drop out of your life…then imagine reading this very article that you wrote – lip shaking tears of happiness and gratitude…I thank you for making this day feel less lonely.

  14. What a beautiful story, and thoughts! Being a parent of a Special Needs Young adult- now 30, (afflicted with Cerebral Palsy), and raising him pretty much by myself pretty much most of his life, it has been very difficult, trying, exiting, emotional, you name the feeling and that is what it has been. I thought I had been through the worst of it getting him through the school years, but boy was I ever wrong! Now he is in an adult day program and having more health issues than he has ever had, He was blessed to not be a real sickly child! Now it is getting others to just understand he needs more than what they are providing, especially for getting paid for him to go there. It is 2 days out of his 4 days at his day program that he spends on the computer, which he cannot read nor write, and does not recognize the colors or letters. Another day is spent walking through stores. and who knows the 4th one. But there is more down time or riding around in the vans while the staff run their errands, than learning anything. He NEEDS the socialization, but yet he is put with 4-5 other adults that are all non verbal. so he does get to spend about 1/2 hr-1 hr in the mornings and at lunch, and about 1/2 hr at the end of the day. Which is 3 pm. He is excited to go to program but also comes home very upset almost every day. I am trying to find somewhere different for him to go, but there are not a lot of places to choose from. So the defeat and tiredness does not end after they graduate high school, or better yet, are 21 and not able to attend school anymore. I would so appreciate people that i could talk to and become friend with who truly understood.. I so appreciate your understanding and heart felt message, it does mean a whole lot. My Casey is a wonderful, happy, easy going young man, but as he has gotten older I have had to watch him gain more and more frustration. anyone wanting to talk, please feel free to email me! Mynanakandi@aol.com.

    • Thank you for taking the time to tell me about Casey and share your experience. I often focus on children with special needs but parenting adult children with special needs has it’s own challenges it sounds. I wish you the best and pray for a supportive and encouraging friend in your life.

  15. This is awesome. I have two special kids – one has Childhood Onset Schizophrenia, the other has Epilepsy and Reactive Attachment Disorder. Supportive friends, whether their children are “neurotypical” or not are a blessing. I treasure them all. Thanks again.

  16. Thank you for saying that you see us. I have twins both with Down syndrome and the things that I hear about them are truly shocking. Yes they have outbursts, yes they have their moments of just being plain mad. Then there are the moments where they love to cuddle, smile, make me laugh. Each and every milestone that they reach is a reason to celebrate. I love my job, and my other three daughters have been very encouraging as well. I am thankful that someone sees.

    Renee

  17. Thank you for your heart felt honesty. My son jack is 15 and has Down syndrome. I would never change a thing and consider him gods true blessing in my life. But in all honesty it is tough and difficult. I truly appreciate seeing things from your point of view, thank you for sharing it. I will remember your words next time an uncomfortable situation arises. And I will certainly try to be a better teacher.

  18. I’m not raising my childeren alone. Don’t forget about all the wonderful fathers too. My husband has cried by my side and spent more time on the internet watching YouTube videos showing other kids accomplishments and milestones and leaving nice comments. I see so much focus on moms but don’t forget about the dads!

  19. This was lovely. I am the mama of a 6 month old daughter with down syndrome. She is the love of our lives and seems to be that of the people she encounters. I am not one of the parents who have a difficult situation because, so far, she’s been incredibly healthy. But as a mother of a special needs child, I do appreciate your honesty and care.
    Thank you!

  20. What a beautiful, gracious letter for us mothers who have kids with special needs. Thank you for your kindness. Thank you for seeing. Thank you for being so honest….WE need your honesty. We tend to get angry when people don’t understand…we need to be held accountable for our responses to people. And, we will take all the encouragement we can get.

  21. Reblogged this on mamaexplorer and commented:
    A short time ago I joined a group called International Down Syndrome Coalition. Today they posted a blog from a dear woman that I only wish I had the opportunity to know. She seems like an amazing woman; I’m not just saying this based on her writing in her post, but her heartfelt letter is awesome. Please read…

  22. Thank you. As a father to a daughter with Down syndrome, your post will make me wonder if some of the ogling I sometimes perceive when we’re out in public may be because the ogler is jealous of us having her. As for what you can do, I would recommend volunteering with your local Down syndrome (or other disability) parent support organization. Helping out at a potluck, an event, or volunteering to tutor have been transformative experiences for those involved with our local organization.

    • It makes you think doesn’t it, those stares you thought were stares might be wishes! Great suggestion to volunteer with a support group. I volunteer in my own kid’s classrooms at school. Just the other day I saw a little girl struggling down the hallway with a walker and support person. I made a mental note that I need to see about volunteering at school with the special education program. I’ll look in to support groups in the area.

  23. I think you get it 100 percent. I wish there was a magic formula for telling you how to respond or act in any given situation, but there’s not. I think just saying, “How can I help?” would go a long way to covering most circumstances. And you are clearly a thoughtful woman who cares, and that counts for everything.
    My son is 17 and has down syndrome and i was thinking the other day that I honestly don’t think that a day has gone by that that kid hasn’t made me laugh. Personally I am not one of those moms who thinks my life is particularly hard, so you wouldn’t ever have to tip toe around me. I think probably there are a lot of families like me. We have our hard days, to be sure, but ultimately it’s not harder then your life. Just different.

    • I think you’re so right, each situation is different, as evidenced by the comments on this post. You can never go wrong with a sincere question and offer to help! Thanks for sharing your perspective!

  24. This is so beautifully written. As the mom of a perfect little boy who just happens to have an extra chromosome, most of the time all I want is for my friends with typical children to want to understand that sometimes I have to fight battles that they will never have to engage in. And that on most days, these battles are a passion that consumes almost all of my thoughts. My direction in life has changed dramatically. I don’t want to change my son, but I DO want to change how the world sees and treats him. And if I don’t have time to meet for lunch, or a play date, or a glass of wine with the girls, it’s NOT that I’m snubbing my friends. It’s just that my priorities have changed, and making this world a better place for my son and all the precious people who share his challenges has now become a labor of love that will be a priority for me until I take my last breath.

    • Thank you for sharing your perspective. Life does change our priorities and I think it’s often for the better. Making the world a better place for our children is something I think we can all rally around!

  25. Thank you for taking the time to write this. I traveled the “typical” parent path three times before becoming a “special needs mom”. Honestly, I usually don’t know how to handle situations myself when they happen….there wasn’t a manual with the DX….much less how to ask for help. What would I ask for? A full night if sleep? A break from the behavior issues? Help with the medical bill? Privacy during a public tantrum? If you see me jump in with a smile and take a turn with my cape. It’s a moment to moment life I lead. Your prayers are precious and very needed. We share the same hopes and dreams for our children. Please share your heart with your children knowing they share the world with mine. The world needs more people like you πŸ™‚

    • Thank you Sherri for your comments and perspective. I especially appreciate your advice to teach our children to value others. I hope to pass on my passion for people and what’s right and good to my two kids.

  26. I loved this! thank you for sharing your heart! I am mommy to a beautiful 2 year old girl named Kata who has Down Syndrome. I am thankful you said this because I know as special needs mommas we tend to get defensive when sometimes things aren’t meant the way we think they were. We need to be more sensitive to the “typical momma” knowing that she doesn’t intend to hurt us! Thank you thank you for saying this!

  27. I bet I am not the first person to say this but I wish I could give you a big hug!!! I have a son with cerebral palsy and he is my life, alone with my other four kids. But there are many times when I wish people would stop staring or wondering! Just ask me and I will tell you!

  28. My favorite insight you describe is a “holy interaction” that takes place between parents and their children with special needs. I have a daughter with special needs. Parents are very aware of the awkward glances of well-meaning people. I remember the very nicest, compassionate thing done for me by another parent…My daughter with autism was agitated and nervous at a group event with new people she was meeting. So I was sitting on a cement step with my daughter in a jogger stroller–unable to sit with the other mothers but wanting to keep my daughter close to her peers. I felt out of place and lonely. The mother plopped down next to me on the cement step and said, “Hi, I’m Mary!” I couldn’t believe it! Just sitting next to me I felt her compassion and support. It provided an opportunity for me to tell her why I was sitting there–without feeling like I needed an excuse. Parents of children with special needs will appreciate feeling welcomed. Find something genuine and kind to say about their child. If it is a busy or public event, offer to get them a plate of food or a drink. Public, busy events are often more difficult to maneuver. Remember the parents are regular people that like you, had very typical lives prior to having a child with special needs. The more authentic you are, the more we feel like our regular selves–and in our homes there are no barriers or obstacles to make us feel awkward. Everyone has “issues” they are working on with our children–my daughter’s challenges are just more public. I find people like talking to me because, through my experiences, I am not judgmental and can easily offer compassion to their worries. Don’t pity parents of children with special needs. Ask them with a kind heart if they need help. Be polite. Say hello to my daughter and to me. We had a stranger at one of my son’s baseball games stop us and say, “Hello beautiful!” as he held out his hand to our daughter and made eye contact with her and us! So many people are worried about being correct she is constantly overlooked. Our daughter beamed from such a genuine greeting from a complete stranger. What a great world it would be for get and us if everyone was that happy to meet her!

  29. Thank you for this precious post. My beautiful Grant is 2 1/2 and has cerebral palsy. As a mom of two “typical” kids and one “special needs” kid, this elite club is one I had never expected. I also probably had never given lots of though to that club before I joined. So I treasure your candid thoughts and feelings. When we join the “special” momma club, we may forget how life was before. Thank you for reminding me. And as for your desire to join us, I admire that tremendously. The thought that a person would willingly take on the battles and strains of parenting one of God’s extra special gifts is overwhelming to me. It is beautiful how God gives that heart to some.

  30. As the mother of a child with special needs(Down’s syndrome), I want to extend my thanks for this heartfelt letter. I can clearly see a lot of heart and soul went into it.
    You’re absolutely right when you say a special bond exists between a parent and a child with special needs. It is because we have to fight so hard for all their right including medical, educational, social, etc.
    My advice for “typical” moms is this; please don’t extend apologizes that our children have special needs. We’re not sorry. Chances are, we knew before they were born and chose to have these children anyway. Also, we generally treat our children as if they don’t have special needs. If we treat them as if they are different than children without special needs, then so will everyone else and they don’t feel or think they’re “normal”.
    I have 4 boys; 3 of which do not have special needs. These 3 boys throw more temper tantrums in public than my youngest with DS. If a “typical” child throws a tantrum in public, most people don’t blink, but if my son with DS does it, people look, whisper to each other, or say something like “awe, he’s so cute” and start baby talking at him. FYI: he’s 5, and goes to full day kindergarten and participates in “typical” classes. So he’s definitely NOT a baby.
    I think so far what you’ve done to support and encourage us is commendable and very much appreciated.

  31. Thank you for writing this. It’s been on my heart for a long time now to write something like this on my blog (DiscoveringDowns.com). It’s hard for me when I see groups of parents of children with disabilities complaining (especially on Facebook) about things strangers said or did. My son, who has Down Syndrome, is only two so I’m not passing judgement on parents who seem… “easily offended” are not the right words…. I wish I could find the right words…. But it seems most of the complaints are against comments people made intending to be kind or simply not knowing what is right. Until I had a child with disabilities I didn’t know, and I still often don’t. I used to have panics about meeting up with my Down Syndrome community group because I’m such an expert at “foot-in-mouth” moments. Luckily, parents of children who have disabilities are also (generally speaking) an incredibly kind and understanding group of people. I think we, the Down Syndrome community, need to take responsibility for our prickly parts. Yes, they come from genuine hurts. attacks, experiences and genuinely deep daily pains. But as long as we breed a spirit of “omg can you believe what that ignorant person said” outrage, we discourage genuine conversation and inquiry from those who would know more if we were approachable. Like I said before though, I do think parents of children with disabilities are incredibly understanding and wise and the Facebook rants to which I am referring are rare glimpses into complex people. Anyway, thank you for basically saying what I meant to say but in a beautifully gentle and kind way.

  32. Words cannot express (and I am considered a writer of sorts) my utmost amazement and explosion of emotion across the entire spectrum reading this. From someone gets us, someone wants to, oh to have someone like this nearby, what I wouldn’t give for date night, I wish you could hear his laugh, you just HAVE to read some of my Little Man posts, the occasional traffic jam in my brain my employees and family laugh about with me…is overwhelming right now! Ultimately, from the bottom of my soul – THANK YOU! The only regret I do have is that my “normal” children experience the loneliness too. Only hoping someday they will see the joys that he is too!

  33. Pingback: Everyone Should Read This Letter: – Discovering Down's

  34. wonderful letter. my son has autism, developmental and speech delay as well as a chromosome deletion disorder. he will be 7 in a couple weeks and although he is the friendliestchild he can really have some moments. there may times that others just dont know how to interact with him and ive seen him be almost completely ignored, that hurts a mama to the core and they dont always want to find out how to be with him. then there are others who are truly blessings that will ask what is he saying or how do I show him and he’s made another friend for life. it gets really hard sometimes and im just very thankful for my husband, my family and those who will take the time. god bless all parents!

  35. Dear Beck,

    Thank-you for your heart felt words. I hope that there are more of you out there. As a grandma(yes a grandma of a Dup15Q kid). I have many challenges. Nicky my little angel is five my nest youngest is thirty-four. I have two challenges as said daughter threw away her baby. Lucky enough someone contacted us and we were able to adopt him. Playmates are non existent as all our friends have grandchildren or even great grandchildren. Most see us out an about and I get whispers of you spoil your grandchild too much. If only they knew. Thank-you so much for spreading the word. All we ask for is tolerance not ridicule.

  36. My two cents… You are probably not the Mamma those articles are talking about. You may have made a comment here or there that YOU walked away thinking ‘ugh, why the hell did I say that’. When in reality we didn’t think twice your comment. OR haven’t said/thought the same thing at some point in our own lives!!! It’s the true bigotry or ugliness people express toward ANYONE that is so hurtful & intolerable. It’s so crazy this day in age that it continues to occur daily in well educated areas! The intolerance is unexpectable! If I share some of the comments you probably wouldnt even believe it… Not to mention not worth givening them credit :(( What I suggest to awesome Mamma’s (like you) is to EDUCATE your babies on the beauty of acceptance… of ALL. It is our children that will truly make the difference for tomorrow! It’s sooooo simple… Children are so eager to accept when they understand the unknown! Sure my kid is different, maybe even “weird”, BUT teach a child weird isn’t really SO weird and they are ok with it! Maybe even like it! Because my kid doesn’t care what other people really think & now yours gets to act really silly like they may really want to sometimes?!? Without judgement.
    Anywhoooooo Knowledge is power! Thank you for taking time to ask πŸ™‚ It takes a village!
    Mamma Becky to the craziest 12yr old boy boy who happened to be born with an extra chromosome ;~} BigFatLoveForHim!!!

  37. As a mom of a ten year old daughter with Down Syndrome, I found this letter to be heartfelt and wonderful! Thank you so much for your compassion without pity. We as moms don’t want pity, just acceptance and a little understanding. We really dont know what it is like to be a typical family.

  38. This is sooo nice, but I have only ONE request…please please please respect that handicapped stall in the restroom. I know you ( and by you I mean dear person reading this comment who never thought about it before) think you are only in there a few minutes, but those few minutes can be life changing for my son and I. I do my dead level best to go to stores that offer family restrooms, but they are few and far between. As I stand in Home Depot counting 9 open regular stalls, my 21 year old disabled son in tow, that one special handicapped stall tightly locked shut, things happen. A woman with little girls comes in and screams at me for being there with a “man”. Other lady tells me to take him to the mens room, yea I am going to walk my son in past open urinals, sure I am. While I wait for you to end your phone call ( WHY are you on the phone while in the restroom anyway?) my son’s Depends leaks and pee runs down his leg…still I cannot take him into a regular stall and shut the door, there just is not room for us both. When you finally open the stall door you give ME a nasty look?!? Yes, he is a man, a 21 year old fully disabled man, and he needs his Depends changed and thanks to the long wait, his clothing as well. Please, please please…leave that stall open for the ones who really need it…over weight or whatever…skinny able bodied people stay out…thank you.

  39. I’m going to be the voice of dissent here and say that I’m not exactly sure what you’re getting at with this post. It seems that you both pity us moms of kids with disabilities and are envious of that “special” something you perceive we have? I feel like what you’ve written is divisive – you’ve managed to underscore YOU and US, and the great divide between us. You don’t want to have the burdens you perceive we have, but you want the . . . ? Hero’s medal? Accolades? Extra special bond with your children? What?

    Without realizing it, I’m guessing, you’ve managed to perpetuate stereotypes of both kids with Down syndrome AND stereotypes of parents of kids with Down syndrome. It rubs this mama the wrong way.

    Listen: I have seven kids. ONE of them has Down syndrome. The other six are “typical.” I’m probably far more like you than you realize (except for using God as an excuse for the choices I make – I don’t believe in God, so I get to take full responsibility for my choices). I’m a mom. I doubt I’m any more committed to my son who has Ds, or love him any more than I do my “typical” kids – or any more than you are committed to your “typical” kids, or love them, for that matter. I don’t get where this notion comes from that if someone has a kid with special needs, they are suddenly more than. More brave. More resilient. More accepting. It’s bullshit. If you’re a parent, you do what it takes to make the best life you can for your kids, special needs or not. The end. The big difference is that we are faced with ignorance and prejudice every damn day – and whether you intended to or not with this heartfelt piece you wrote, you’ve expressed ignorance and prejudice by putting “us” and our kids in a separate category from all you “typical” moms (of which I am one, as well, given that I have six typical kids).
    What should you do if you see a mom with a kid with special needs shrieking in public? I dunno . . . what would you do if you saw a typical kid shriek in public? Because, hey, they do that too. I bet your own kids have. So what did you do? What would you have liked other people to do? Instead of seeing us as in a different category, just see us as moms, just like you. And as far as saying ignorant things – it’s really pretty easy: don’t use the R-word (that’s a total no-brainer these days – I mean, everyone knows that’s offensive, right?), and don’t perpetuate stereotypes. Easy peasy.
    We’re all just people. For real.

  40. Thank you. That’s all I can say. I have two children with disabilities. One has ADHD, Asperger’s Syndrome which is hard enough for the little guy regarding relationships, educational difficulties, dealing with transition and frustration, daily living needs, etc. But I know he will make it because I will be there to make sure he does. My littlest love is 3 and has Down syndrome. He also has several medical problems, to include a rare tracheal malformation that makes it very small. His trachea is the size of a one year old (and he’s three, as I stated above). He’s had a mass removed from behind his heart, open heart surgery to repair two holes and several surgical scopes to deal with the trachea, lungs and esophagus. Outwardly, he looks very healthy and strong but inwardly he struggles. I don’t know what it’s like to go out when I want, to let a babysitter come in and watch him while I do, well anything. So, what I’m getting at is that you spoke to my heart just now. You spoke to things I’ve thought, go through, worry about. I do have two older girls who are “typical”, so I have beauty surrounding me in different ways. Each child is special. Your family is as special as ours. I’m sure if something happened to a precious one of yours, and you found yourself having to care for them in the ways we have to care for ours, you’d step up to the plate as well as we do. However, sweetie, I want you to know I appreciate your heartfelt words and those words alone, made me feel less alone, less isolated. I also want you to know we are not any more or less than you are. Our fears may be greater, our sad days may be deeper or darker, our highs may get higher but, we are already in the same “Elite Mommy Club”. One thing I’ve noticed I’ve done differently with Gabe than with my other children (3 year old) is that I am a fool for pictures. I’ve recently written about taking all these pictures, that run in the thousands. I’ve figured out I’m really scared of missing something with him, really scared of losing him. I didn’t realize why I was doing this. Why it seems to possess my soul to take so many pictures, but I did figure it out. It’s scary thinking you may wake up to your little one not being able to breathe, to the reality that to save his life, you may have to let him endure significant pain and even more significant risk. It is a bond that is as tight as any on earth. He has me at soul level. It’s unfathomable by anyone who doesn’t walk in our shoes. Although my child is a pure blessing, is my light, has taught me what it means to meet someone where they are, to stop judgement on what perfect is, and to stop trying to be perfect in order to have someone love me. Even though he has taught me literally what matters in life…it’s not a road I want any child to have to walk. His Ds doesn’t bother me at all. What hurts me is when he hurts, when he struggles and when he doesn’t seem to want to try because it’s so hard. But that’s when mom does the hard part. I believe for him. I treat him as if he can do anything. I treat him as typical and I invite others to do the same. He can do as much as I think he can. Thank you for getting involved. I have a feeling you will bless many with your genuine heart. I send you my heartfelt thanks, love and light. Bless you. Rebecca, Gabriel and Joshua. πŸ™‚

  41. Wow! Thank you for writing this letter. Its good to know that people think like you. Your letter really touched my heart. I wish people would step in and ask me questions and not stare at me cause when they do it hurts. I feel like someone is judging my patenting all the time.

  42. Thank you, thank you, thank you. 29 years ago my husband & I gave birth to our 1st child who was born with Down Syndrome & lived 4 months. Since then my purpose in life is to encourage, empower & enable Moms who walk this difficult journey. Your open spirit is what every Mom of a child with special needs is looking for. Never hesitate to ask if or how you can help or advocate for their needs. Most of the world looks the other way. You are a blessing!

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