What Brings You Here?

Dear Reader,

I haven’t posted in over a month. I was going to start apologizing all over myself instead let me assure you I have been doing stuff. Lots of stuff. And – I do have a couple posts coming down the pike soon. There – I am a worthy human being.

But, the reason I am writing to you today it isn’t my ill concealed guilt. I have a favor. For those of you who have subscribed to my blog and didn’t feel the love and appreciation as reader feel free to snicker in a really nasty way.

My favor? I want to know who you people are and what brings you here?

Are you a parent? Do you have a kid with Down syndrome? Are disability rights important to you? Do you like funny writing about bodily functions?

I am looking for a sentence or two or whatever you want to give me. If you post it as a comment and have before it will be available immediately for public reading. If you do not care if it’s public – cool. Otherwise feel free to email me: atypicalson.com

I have been writing here about my family for almost four years. Lately I have had the good fortune to be published and reprinted in some other locales – The Huffington Post, The Good Men Project and Sydney Morning Herald, Daily Life section.

To my subscribers – some who have been here since the beginning – you read me whether I wrote any place else or not. That has always meant something to me. Many of you comment which amazes me. I do appreciated you. I thank you very much for supporting me by reading me.

Best, Kari

86 thoughts on “What Brings You Here?

  1. I’ve written a little for GMP, and need to do more – that’s where I first found you and sometimes I just like to follow other GMP contributors.

    Also, as I am well-endowed spiritually, I haven’t been able to find a bodily function that isn’t funny!

  2. I love your blog because I enjoy intelligent, caring and funny stuff! I also am a mom who has a son, Jaime, 6 years old with Down Syndrome. I love to hear about your struggles and triumphs with the school system and about your son’s personality.I am very much into promoting inclusive education because I think it is the right thing to do from a civil rights angle and an educational angle for all and it seems you are on board with that. I look forward to your posts! Plus, I also admire a woman who is willing and able to put her heart and thoughts “out there” for all to see, you seem fearless!
    Liz Tree

  3. I am a new mom with a 10 month old son who has Down Syndrome, and everything you asked is important to me and my family. I just like read about what is to come for my baby, and from someone who has a sense of humor!!

  4. I have laughed at your hysterically funny comments for years. You put the truth out there in its nakedness. I have worked in the health field for many years with adults and children and you are always spot on

  5. I have an 8 year old son with DS. Reading your blog makes me happy. Thanks. My little guy has two moms plus me and my partner. I’m always on the lookout for family experiences that don’t fit the mold.

  6. I’ve been reading for….maybe a year? My 18-month old son also has Down syndrome so scoured the internets looking for blogs in the early weeks after he was born and came across yours. I love your insight and humor

  7. I am a mother of a soon-to-be 4-year-old boy with Down syndrome. I read because I enjoy reading observations on bodily fluids and real life with a real kid. Also because I have a real aversion to the “special mothers of special Angels” similar to my aversion to embroidered inspirational sayings. Our situation is a bit unique in that we’re dealing with raising our blue eyed, blonde kid in Japan and trying to navigate and advocate for inclusiveness here. Then again everyone’s situation is unique, so you know…

    p.s. My sister-in-law in the US, not knowing that I subscribe to your blog, sent me a link to your “How I told my kid he has Down syndrome” post.

    • Special mothers, special angels, embroidered sayings.
      Absolutely got you there 100%.
      I’ve blogged for almost ten years about my son with SOD, family life, schools, hospital being a Dad and always with honesty. This grates on some folk but for me, and for this blog, it works.
      So happy to find another Real Blogger.

    • Wow, I bet you have some stories. Of course you like bodily functions with a 4 yo boy:) It’s like their whole life.

  8. i love you for adopting him!!!!!!!!! i worked with these kids and they are awesome!!!!!!!!!!!! they are very bright n lovable kids!!!!!!! my friend had a downs syndrome son and he was a joy to watch!! i wish you all the best love n happiness with your son!!! thank you for filling my day!!!

  9. I came here after seeing your recent article on HuffPost Parents. I am an older mom of a one year old daughter, and a teacher. I used to babysit for two families, each with a daughter with DS. I have a place in my heart for children with DS, and I think it’s because I thought those little girls were amazingly precious. How anyone can treat ANY child poorly, let alone a child who needs more patience and that can show us so much more about life and love amazes me. While I can understand people wonder why one would opt for (what they perceive as) such a challenge as adopting a “special needs” (ick on the term! but I don’t know how else to phrase it) child, it’s a whole different thing to actually ASK or comment on that. Rude. Thank you for sharing your life and experiences with us all. And yes, your little boy IS model cute!

  10. Just discovered you and darling boy on Huff Post FB posting. Thank God for someone who is far more eloquent and funny to say for me and my own darling boy what I want to shout and have in I hope productive ways these 18 years he has put up with my clueless soul that he drags along paths to wisdom whether I am aware or not. My Sweet D named Duncan has filled and broken my heart more times than I can count. Damn if he did not decide “fuck it” I will take that extra 21st chromosome and raise you autism and low muscle tone and who needs words? I got this – bring it on.
    So he was and is irresistible, charming, lazy like his mother and sisters but when motivated? Move outta the way.
    He is not the poster child the national advocacy groups promised me he would be if I was a good enough mother. If I used the right therapists and did all the things and read all the books and joined all the groups. Well shit.
    He did bloom and then he regressed and my heart broke and we hit the adjust button and I embraced and his big sister could get me to laugh creating a voice for Duncan that literally made me wet my pants as he was wetting his any way so it was fine. We fell away from the family support groups as he became like the 800 pound elephant that was invisible at the conventions and the “We are more alike than different” campaigns to help traumatized new parents not give up on their babies and toddlers. “High functioning” kids and adults with DS were featured and I am thrilled for them and their families and love the fact they are often self-advocates and ambassadors to society. But what about those who have DS that are ….the dirty word Different. “High and low functioning” are terms on the decline and that’s cool but I have not gotten the memo on the new phrases to use. The Different population in the DS community is not small. Those with dual diagnosis of autism or other issues is common. Babies are cute and the “future” is idealized which frankly fucks up more lives than stars in the heavens. It can do it in the special needs world and DS world too. So I share this not to bitch but to share with one of the few parents that seems to get that we have these precious gifts called children and no matter if they have an extra chromosome or they have other things that create challenged for them and us – we have to help them and then others see what we see – a perfect self in who they are in how they are made and we can’t all be talented in the way the world values but the world needs to readjust what is on that list of things to value. My son inspires others and he does it while considered “severe and profoundly” disabled. Yet what he is measured on by a school system or society’s standards does not mean he is less. He is far more than many of the assholes deemed successful in the world so I have no issue with vapid IQ worshippers (the worst) and I do see the strides these last 18 years. So many more roads moving forward – but for my boy and those who are seen with pity among our own DS community? Please help me let them know it is not pity or judgment or awkward silence we need (and have gotten) – it is inclusion and that we too are part of what DS is – some more alike than different and plenty that are different and that’s just fine.
    Duncan is my hero – he takes on challenges daily I can’t fathom. You are my hero and your sweet boy – you embraced this child and your fierce love makes us better. Thanks for that. Thanks for ripping that writer a new one and hats off to him for owning his ignorance and trying to make up for it.
    I will be sharing your blog for many to enjoy. Surely you have met Martha Beck? You remind me of her in her book about Adam. Keep up the great words – kiss your darling for me.
    In thanks,
    Ann in Chapel Hill NC

    • Wow! First you are a lucky mom and that is a lucky kid. Hell yeah, let’s get over how we are suppose to be. No one works harder than my kid than maybe your kid, Ann:) Yes INCLUSION. The key.

      If I have your support I am doing something right. Thank you because it means a great deal to me.

    • Can I reply to a reply? I will try. Ann: Thank you for all you said. You have opened my eyes to a lot food for thought. How to promote inclusion with out trying to convince everyone our kids are “more alike” wether they are or not. The reason would follow that if you are not alike enough you don’t get included? Yet, I do want others to see past the diagnosis (s) to see we all share emotions, etc.When I say see past I don’t mean pretend it is not there but I don’t want it to cause immediate exclusion, no friends, sympathy etc. I am currently gearing up to fight to have my son be the first child in our school district to be included in gen ed in first grade…and I imagine doing presentations in his classroom about DS. I will be picking my words even more carefully now. (cause it’s not just about my kid, I want future young students to be able to stand on our shoulders to be able to attend their local school, no matter the degree of difference, just to phrase it that way for now. andI too don’t like the high/low function terms either……
      (Thank you for you comments.

      • Mind meld. I am thinking about doing a presentation on Ds at school Thorin. Scared shit less and don’t know if I can do it. Maybe start with staff:)

      • I think its important not to stress any specific Downs traits/commonality but, rather, promote individual love and respect for EVERYONE. Focus on how we are all different yet the same – different ways to talk (different sounds of voices – for instance: some people stutter or repeat sounds, some speak with their hands, some have deeper and some higher pitched voices.) And how we all have feelings, that we all feel pride, hurt, sad, lonely, or happy – but not all at the same time as everyone else. And how some people are different in that they wear eyeglasses, or use a cane or wheelchair to walk, while other people have invisible/inside differences like the way they think or may have pains/body aches or spasms that may not be visible or noticeable to others. Or even a hand, arm, or leg that they can’t move (paralysis). We are all PEOPLE, we have feelings and different personalities – but ALL people hurt, at one time or another, and all people are happy usually most of the time. We all cry. We all laugh. We all eat, drink, and go to the bathroom. We all wear clothes. But we may look different, or feel or act different than others. We need to not judge other people and focus on judging OURSELVES to be good people. To understand even when you can’t see what’s wrong. Show love and compassion to one another. That is what all children and adults need to learn!! They do not need to be told what sets people with Downs apart from others….avoid saying “people with Downs… (do this or that or look like this or that)” just they need to know that we are all alike, and all different in many ways and we need to understand and appreciate those differences.

  11. My only child who had DS died two years ago aged 21 and I miss him so much. I find comfort in the stories of other kids with DS and really enjoy your stories and style of writing.

    • I cannot imagine how painful it is to lose a child. I am very sorry. I am glad if reading about our kid is a good thing. So kind of you to take time and tell me this. Best, Kari

      • I suppose when you have more than one child you take pleasure in noticing their likeness to yourself, their other parent or their siblings. My brother has 4 kids and they are so alike it is unreal. If it wasn’t for the three year gap between each one of them you’d think that they were identical quads. My boy was an only child but I see a likeness with every DS person, like the DS family was the real family and we are the adopted ones. X

  12. Hi, Kari! I followed the link to your blog from your HuffPost article about the a**holes at the State agency supervising your adoption. You don’t mention your State of residence; I know that some are better than others. It is also true that in some Sttes that if you remain a foster parent, rather than adopting a child (ANY child in the system) you remain eligible for Medicaid and some financial assistance from the State, which will terminate with adoption, certainly a disincentive for fosters to become permanent parents! (I do find this quite illogical.) I didn’t realize that your boy was already in First Grade until I followed the link, but most of my commentary still applies. I do heartily recommend the Montessori methodology and philosophy of education, and hope that the school your boy attends has embraced her principles and materials. I recommend the book “Montessori in the Home” by Paula Polk Lillard (it’s in paperback and has photos) as an excellent introduction to Maria Montessori’s method, if you haven’t already found her. She was a physician and a MOTHER, and lots of later educational writers and theorists (including Piaget and Susan Isaacs) stole a lot from her work! And, ALL boys are work! Mine is a 34-year-old Army sergeant, and he is still a PIA (Pain -in-the A**) at times! Yes, it IS possible to swear in ASL. G-d Love you all!

    • First, I have to tell you we love our adoption worker and are still in touch with her. The supervisor we got to know on better terms. And of course we love our son’s foster mother – who he still considers his foster mother:) Even though we didn’t get to melt into the moment we did melt and were mostly inarticulate at that meeting. I think we said over and over, “We just love him.” “Yea, we know we met him 30 seconds ago but we have loved him for two months.” Second, I will get the book. I am always on the look out for what is best! Thank you so much for writing.

  13. “Why am I here?” I don’t waste time dwelling on figuring out the answer. Instead, I spend my energies trying to be “here”, in the moment and with positivity (*snarf* sounded good when I typed it. Then I remembered how I pushed my kids out the door this morning, almost late for the bus” and can’t remember if they brushed their teeth. I’m pretty sure I fed them…).
    Mom of two. 14 yr old son with Downs and a nearly teenage daughter.
    I. Need. Humor.
    A friend kindly posted a link…

  14. Hi Kari,
    I found your blog from a Huffington Post article “Why I don’t usually talk about Our Adoption”. You ask what prompted me to follow your blog. My son with Downs’ Syndrome is now 28 years old. He’s a delightful member of our family and has two younger siblings. Unfortunately, until people experience the nature and unique beauty of this awesome group of people, old stereotypes prevail.

    How fortunate for you and your son that you chose to adopt him. I look forward to reading some of your older posts and following the new ones.

    Blessings,
    Cindy

  15. my Nephew and his wife are expceting a baby with DS in the spring. I have been searching for articles on parenting and families with a child with DS, to better help me understand what they are going through. We are all so exicted for this new little member of our family to arive.

  16. Hi! I just read your blog on Huff Post today…absolutely superb! I am a single Mom to a wonderful 23-year-old son with DS…he, too, is absolute superb — in every way imaginable! You have a great blog! I just happened onto it and find it somewhat amusing that you posted your Huff Post article on my birthday yesterday! What a great “gift” for me to read! LOL!!

  17. Ok, first, I agree with all the posts above about your writing talent, love of life, and all that (not the least of which is the adorableness of your son – I love his locks the most, I think. But, myself being a reddish blonde, you could say I am fond lighter colored hair. Just don’t tell that to my own two darker-haired children!). I happened across your blog via Huffington post, and am eagerly waiting to read more.

    Anyway, about me, briefly as possible (not easy!) – I am 45 yrs old, have four kids (though all we ever planned on was – two for me, after convincing – there’s that word again – that my husband missed out on not having a sibling as I had had one). So our story is that I had grown up in less than ideal, though not deplorable, family and child care settings. So, to “correct” that, and to be a positive influence on the world, I decided 25 some odd years ago that I would open a family child care business out of my home “to at least be a safe, affordable, welcoming place for the kids I cared for.” And not the less-than-ideal child care situations I was placed in for care as a child. I somehow always knew I wanted to adopt. My husband was open to it, but only after we struggled with 5 years of infertility and finally had a bio child to love. More infertility, and he felt, despite reservations about the foster care system, that he was ready, since we had one already, to face the risky, dangerously potentially very hurtful chance of losing a child we’d come to attach to and love in our dual licensed foster-child care home. My “bracing” involved telling myself that, no matter the outcome, I’d at least had helped the children who were, possibly, temporarily in our care, to be safe, and hopefully, happy, while in our lives – no matter how short or long the duration. Also that, as long as permitted, if they were to go back to bio family, then we would remain supportive as it would be best for them.

    Along came our first placement – a boy/girl sibling group. We loved them immediately. Eventually, and actually, fairly quickly, we met and formed a trustful relationship with the father, mother, and the father’s family. About two months after placement, the mother overdosed herself on cocaine and died. The father, he eventually got into treatment, but this was after the plan had changed to “adoption” for the kids. Termination of Parental rights began, and was refuted by the father. At the subsequent mediation meeting, the father relented to us adopting the kids, with the stipulation that he continue to get visitation. In the agreement, it is written that he may do so, but if, at our discretion, it appears at any time that he may be a threat to the health and/or welfare of the kids, we have the right to stop visitation. Ours is a rather unusual case. Today, and ever since the 2008 adoption finalization, the bio father sees his children every weekend on average. He takes them out to family meals or has them in his home with their grandfather. Occasionally, he invites our two bio children along – to the movies, for instance. We have formed a close relationship with the bio mother’s sister – who we had first met at the grave site funeral service, and whom I now call my other/new Sister. We spend holidays and other special occasions together. I feel I have gained far more than just two children – my family size has MORE than doubled with distant relatives as well! Today, my two adopted children call both men in their lives “dad.” I just have to sometimes ask which dad they are referring to. LOL.

    My plans for the future – ask me, and I”ll elaborate. I want to foster more kids, that’s for sure, but I have some obstacles to overcome first…. more on that later, if you would like to know. :-)

    • Well, you ROCK. Parenting brings in people you never expected. You have embraced that. I love your story. Thank you.

  18. i read your piece on Huffington Post and really liked it. Am also a mom to 2 boys – one 4 like yours and one 2, and I like your writing

  19. I read your story on the Huffington Post. I can’t help to think how lucky you are!!! You will learn so much from your son. How do I know? My brilliant, amazing, beautiful brother had Down Syndrome. I learned more from him in his 31 years than he ever learned from me. Sure I helped teach him how to tie his shoes, shoot a basket and there may or may not have been a driving lesson…He taught me about acceptance, unconditional love, to live in the moment, the list is endless. I thank God every day for the gift he gave my family!

    • Petty,

      We are lucky. Our kid is a great person and funny and smart and has strong opinions (I wonder where he gets that?) You sound like a great sister. Thank you, kwp

  20. I am a mother of 4, I do have a brother with CP, and as a p/t substitute teacher, and just growing up, I have spent time with all types of people. I came across your blog on FB. It’s beautiful, and your son is ADORABLE! thanks for putting yourself out there.

  21. Came here through the Huffington Post. I liked your take on adopting a child with Down syndrome, to not reason from what others expect, but what HE expects from life. It’s the only reasonable question that all parent should ask themselves, probably a little more often. I am a parent myself (two little girls, 4 years old and 15 months) and always refused to do any testing for Down syndrome during my pregnancies. I could not imagine loving the child I was going to parent any less. I find myself struggling with other people’s limited notions about how everybody should live from time to time. It’s easy to feel weak and naive when faced with cynicism. I draw strength from knowing people like you, forces of unconditional good and love, exist in the world.

    • Laura,

      You are correct: “other people’s limited notions about how everybody should live from time to time.”

      I can’t bear that. No tolerance for it anymore. Nice to hear from kindred spirit!

  22. I found about you just now through your piece in huff post. I happen to have an adorable 4 year old sister with Down’s. She’s my world. Initially after she was born it kind of broke me when I learnt that she has an extra chromosome but as she grew up she taught me to see the world in a whole new way that I may have never known being the superior normal kid. She goes to kindergarten with normal kids because we think treating her in a special way will isolate her and it works: she exels at math and according to her teacher she at times is way above than her class mates in math and arts! It’s kind of amazing to see what these truly gifted kids can bring in where the world thinks that they lack. I love my baby chica. :)

    P.S. I love your adorable adorable son.

  23. I found your blog by googling Down Syndrome. I gave birth to beautiful baby girl three months ago who happens to have an extra chromosome. She also has big beautiful blue eyes and a smile that can light up a room! We are just at the beginning of this adventure and I like reading/hearing about the experiences that others have had.

  24. The article on Huffington Post brings me here, but what draws me to you, is that as a college student, I once had this “noble idea” of adopting a child with special needs. I worked at a camp for kids with special needs: Down’s syndrome, autism, aspergers. They came every day for four hours. Most moms looked exhausted and glad for the “break”. I swore I would never be one of those moms. Now, I realize all kids are exhausting and don’t judge any mommies one bit! Anyways, that’s still something I feel called towards. We just had our first child this year. When he was born we found out that he had a congenital heart defect. A few months later, we also found out that he has a chromosomal deletion on the 22nd chromosome. He’s the most amazing gift! But I know our family has more love to give!

  25. I am following your blog for a few reasons. I am a special education teacher and find it helpful to understand the multiple perspectives of parents who have a child with special needs. I follow because I am very passionate and interested in special needs, particularly Down Syndrome; I have been for as long as I can remember. The more I can read and understand, the better. The other reason, which much more personal, and to be honest the driving force to read your blog is that for a few years I have had a strong desire to adopt a child (possibly more than one child) with Down Syndrome. My husband and I aren’t ready for kids yet, for multiple reasons that aren’t important to list here. The more I read, the stronger the desire.

    I just found your blog recently and haven’t had a chance to read all of your previous posts. But so far I love your writing style and honesty. Thank you for sharing your life with us readers.

    How do I subscribe to your blog? I can’t find a place to sign up?

    • Thank you for a couple reasons: you are a special education teacher who wants to know more about children with Down syndrome! and you seem to have a affinity for children with Ds! Our son having Ds played not so much in our decision to adopt him. As I said, “we knew he was the one.” But I think it’s great that is your motivation.I also want to thank you because I din’t realize my sign up for the blog was missing! I have since restored it:) Thanks, kwp

  26. I’m so happy to have discovered you and your blog and your SON! My twin sister, Judith Scott, had Down syndrome and was deaf. Through Creative Growth in Oakland, Ca, she went on to become an extraordinary artist. [ see judithandjoyce.com ] if you would like to know about her. I care very deeply about making sure children and adults with Down syndrome have opportunities to realize their gifts and live their lives fully and joyfully.

    • Joyce, I know who you are and I am very aware of your sister, Judith, the artist. I love her work. Our son takes photographs. I hope his passion stays alive. Thank you for commenting! kwp

  27. Hi
    I am a mother of 6 and just found your blog via huffpost. I will continue bc I enjoy the fact that your “real”. This isn’t some starry eyed Susie homemaker with the persona of Martha stewart. Btw, your son is beautiful. Your a lucky mom

    • Shannon, if I can have any impression on a mother of 6 I must be doing something right! I should add I cannot cook. I can however clean:) I have re-posted my sign up for following the blog! Thank you for taking the time to comment! Best, kwp

  28. found you via Twitter/Huffpost – I’m here because while I have 2 sons of my own DNA plus two bonus sons via my second marriage. That gives me 4 boys (3 of which are teenagers and a 9 year old). I need the humor! I appreciate your frank sense of humor and see that we, as mothers, have more in common with each other than not. ROCK on sister and feel that love! You’re terrific!

    • Kelli,

      Thank you! You are correct – I do think we mothers have more in common than not. It’s nice to be understood:)

      Thanks again, kwp

  29. I am working with a Down syndrome society, as a communications professional. I just found your blog – thanks to the post on the Good Men Project, and will be doing a lot of reading over the next while.

    Thank you for sharing.

  30. I’m an aide in Special Education at an elementary school. While I often enjoy my work, I didn’t seek it out and often deal with disdainful feelings. Reading blogs from parents or people with disabilities gives me a different perspective on how to be helpful. Often parents express similar frustrations that I have and this helps me sort through them.

    • I am glad you are here. And I am impressed you think it is important to hear what parents have to say.

      I think you have one of the most difficult and probably least respected jobs. You actually make whatever is decided for a child happen. Often times you have years of experience or degrees and you are the last to be considered for a opinion.

      We have had great ed techs and we have had devastatingly bad ed techs. The same way there are good parents and bad parents. I would love to read a blog, book, etc by a ed tech. I bet we have similar frustrations:)

      Thank you! kwp

  31. I just found your blog. Went back and read the whole thing, beginning to end. It’s like reading a good book. My husband and I always thought we’d have a couple biological kids and then adopt. Turns out, biology isn’t in the cards for us, so we’re looking at adoption straight out of the gate. That’s what first drew me here – you adopted Thorin from the foster care system. The hook was all charisma, I suppose. ;P

    • “It’s like reading a good book.” Wow you made my day! Adoption has it’s own beauty and story. I feel like Thorin is our kid. Sometimes I forget he was adopted:) Email me if you have any questions. I can at least tell you what we did. atypicalson@gmail.com

      Did you read – On a High Horse post on adoption?

      Best, kwp

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