Category: Down syndrome

Autism, Disability Justice, Down syndrome, Parenting, Therapy

Regarding Applied Behavioral Analysis (ABA) Therapy

Lauren Smith-Donohoe

I have been reluctant to write anything about ABA. Often times when I talk about my position, I am accused of being “judgy” or “mean” to other parents. More importantly, people who have experienced ABA, practiced it themselves, and then chosen to stop have already written and created such excellent pieces about it that it felt like I’d be echoing them for my own benefit.
Every couple months, a friend or acquaintance privately reaches out to ask me about ABA and why I say such negative things about it on social media. Often times their child is in ABA therapy and seems to be playing and having fun, so how harmful could it be anyway? Rather than recreating that conversation over and over and re-living the fear of being friend-dumped each time, I want to lay out what it is I find so abhorrent about Applied Behavioral Analysis “therapy” so that I can point to it the next time someone asks. Friend-dump me quietly, if you must.
I try really hard to remain diplomatic about issues of disability justice– not because I have to or even because I should but in the hopes that because I usually have the capacity to, it may be better received. This piece is not particularly diplomatic. For a much more diplomatic post on this subject, please visit Unstrange Mind. For a calm and reasoned takedown, please see Michelle Dawson’s piece entitled, The Misbehavior of Behaviorists: Ethical Challenges to the Autism-ABA Industry.
There was recently an article on HuffPost entitled, “I Don’t Know How to Explain To You That You Should Care About Other People,” and when it comes to ABA sometimes I feel like saying, “I don’t know how to explain to you that training children like dogs is wrong.” I realize how off-putting that probably sounds, but it’s my initial reaction every time I am asked about why I have a negative view of ABA.
The principle behind Applied Behavioral Analysis (ABA) therapy is that you can train a person by using positive and negative reinforcement. There are a lot of ways to put an academic shine on that, but O. Ivar Lovaas, the founder of ABA, once wrote:

“With responsibility, the developmentally disabled individual takes on dignity and acquires certain basic rights as a person. No one has the right to be taken care of, no matter how ret*rded he is. So, put your child to work; his work is to learn.”
Wow. Let’s unpack that for a moment. Developmentally disabled individuals do not have dignity or basic human rights until they perform to a certain standard. Further, they do not intrinsically have the right to be taken care of. (Side note: please check out Interdependence theory!) This is a part of the underlying philosophy associated with this practice. Disabled people need to earn their right to exist by performing less disabled, and ABA will train them to perform as a less disabled person. At its core, ABA is rooted in the hatred and denial of the humanity of disabled people. Even with the most generous interpretation, it is about pathologizing and rejecting disabled ways of being and holding up non-disabled ways of being as the only right way and the only way to be correctly human.
It doesn’t matter that it may seem like fun, it doesn’t matter that your “Behavior Technician” seems like a really nice person. It doesn’t matter that you read a study that ABA “works,” because what it “works” at is wrong. It is compliance training at its core.
Of all the demographics, one of the groups most at risk of experiencing physical, sexual, emotional, verbal, institutional, financial, and educational abuse is the demographic of people with developmental disabilities. You can double, triple, and quadruple those risks according to how many other marginalized groups they fall in.
In their piece “I Abused Children for a Living,” a former ABA therapist writes, “The ‘evidence’ that they love to cite is based on torture. Would you comply with demands if tortured enough? Probably. Does that make it effective? Well, I guess that depends on what your goals are. If your goal is to gain compliance (which is the goal of ABA) then yeah I guess it’s effective at that goal, but that’s a pretty shitty goal to have, and at what cost?”
Even if we stop here, this alone makes ABA enabling of abuse against people with developmental disabilities because training compliance facilitates abuse. Yes, even compliance about putting toys away and yes, even compliance with not banging your head on the wall and yes, compliance about looking into your mother’s face when she talks. Teaching people to listen without question is grooming them for abuse, and grooming is itself abuse.
Our culture has a way of seeing words like “racist” or “abuse” as insults rather than objective realities and therefore separating them from the regular, everyday people who harm others and making it seem as if only villains in masks (hoods?) and obvious monsters can be perpetrators. That cultural practice isn’t a reflection of reality. Some things are objectively harmful and need to be recognized as such. ABA, no matter how normalized, is one of those things, and calling out injustices for what they are is a crucial part of the road to justice.
ABA uses “rewards” and “aversives” to manipulate behavior, which can remove intrinsic motivation including for learning and socializing. The lack of a reward is itself a punishment, as is the requirement to perform a task that may be painful, scary, or otherwise unbearable in order to receive it. Author and educator Alfie Kohn has written extensively about how rewards and punishments are harmful to children and promoted the concept of “Unconditional Parenting,” saying, “How we feel about our kids isn’t as important as how they experience those feelings and how they regard the way we treat them.”
Parents and therapists often use an ends-justify-the-means approach to therapy for their disabled children, believing that acquiring skills is the most important thing and that it is worth the child having negative experiences if it means that they will have a “better life.” In this context, what is considered better is what is most “normal,” or non-disabled. Survivors of ABA have come forward to say that they have Post Traumatic Stress Disorder (PTSD) and Complex-PTSD (C-PTSD) as a result of their experiences in ABA. This is not an acceptable trade-off. Suicide is dramatically shortening the life-expectancy of autistic people and autistic people are saying it is because they are not being accepted.
Autistic writer Max Sparrow, “All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.”
People often say that their child has fun at ABA therapy, or that “their” ABA isn’t “like that.” Insurance and Medicaid cover ABA and not play therapy and no doubt there are therapists using other types of therapy and billing for ABA. The problem is that this perpetuates the myth that ABA is acceptable and helpful, so it really doesn’t help anyone. Similarly to how ABA sacrifices long-term mental health for short-term compliance goals, insurance fraud gives a small group of kids a better experience at the expense of the long-term realities for all children with developmental disabilities.
With the coverage of up to 40 hours a week of therapy for a growing number of children, ABA has become a cash cow for what I not-so-affectionately call the Disability Industrial Complex. (Anyone whose child has ever needed medical equipment or therapy knows exactly what I mean. $3500 for a stroller???) ABA vendors are raking it in, and even with more and more kids being diagnosed with autism, they are looking for other demographics to target. Enter children with Down syndrome. The latest and most certainly NOT great trend in Down syndrome parenting is ABA therapy. This is not about supporting people with Down syndrome, it’s about using them to make more money by preying on parents’ fears.

“ABA has a predatory approach to parents. The message is that ‘if you don’t work with an ABA provider, your child has no hope,” says Ari Ne’eman president of the Autism Self-Advocacy Network. This message is now being sold to parents of children with Down syndrome, particularly under the guise that it will help them behave in such a way as to be more successfully included in school. The onus for inclusion is on the district, the school, the faculty, and the other families– it should never be on the disabled child. Children with Down syndrome have a right to be included unconditionally and all of the time.
Parents believe ABA will give their child an advantage in a world that is unaccepting because of a reasonable fear for their children. Another former ABA therapist writes, “I thought that because I cared about the kids’ well-being, because I had a strong desire to help them, everything I did must therefore be in their best interest. In my mind, it gave me a special immunity to making mistakes. Caring meant there was no way I could be hurting them. I now realize how dangerous this idea really is. I’ve hurt many people I care deeply about. Just because you care about someone or have good intentions does not guarantee you’re doing the best thing for them.”
For all the material created by adult autistics about their experiences, we have a tiny fraction of that amount from people with Down syndrome reflecting on their own experiences and none that I know of is related to the therapies they’ve done. We need to be asking ourselves the tough questions as parents of disabled children: What is my child’s experience of this intervention? What is the long-term lesson of this intervention? What else is being learned with this intervention? Just because parents have good intentions for their child does not mean they are not harming them.
I want to be able to ask people, “Would you do this with your typically developing child?” but our culture is so manipulative of children, and so demanding that their behavior mold itself to our convenience. We use sticker charts and timeouts and take away devices to cajole and force our kids to bend to our convenience and schedule. Behaviorism is an entrenched part of our culture, but not a necessary part. ABA and ABA-inspired practices might seem normal to people in part because our mainstream child-rearing practices carry similar underlying principles– that children are lesser and should be subservient to earn their place.

Amy Sequenzia writes, “I had some ABA when I was young, and I ‘flunked.’ I want to say, I am proud of this ‘F’ in my life. Of course, the ‘experts’ explanation for having failed to make me into a ‘tidy,’ appropriate,’ ‘good girl,’ obedient and compliant Autistic was my severe impairment, my extreme low IQ, my inability to learn or, as Lovaas would probably have said (and something a doctor actually said), my lack of human dignity. I prefer my own assessment: if you want something from me, if you want me to do something, respect who I am, respect my way of doing things, listen to me and allow me to disagree and to find my own way. ABA rejects all of this and that’s why I failed it.”
As a parent, I have been asked for almost 16 years now how I get my child(ren) to comply without forcing, rewarding, or disciplining them*. I don’t really know how to explain to people that children are deserving of the same level of respect and autonomy as everyone else from birth, but I do know that it’s true. I don’t know how to explain that children with disabilities have the same rights and feelings as every other person, but I know that’s true too.
“We can best help children learn, not by deciding what we think they should learn and thinking of ingenious ways to teach it to them, but by making the world, as far as we can, accessible to them, paying serious attention to what they do, answering their questions — if they have any — and helping them explore the things they are most interested in.”–John Holt

*I’m still learning and trying and growing and messing up, that’s how!

Book Reviews, Disability Justice, Down syndrome, Parenting

Book Review: Not Always Happy by Kari Wagner-Peck

Lauren Smith-Donohoe

I have been meaning to post a review for Not Always Happy, An Unusual Parenting Journey, by Kari Wagner-Peck for a few months now. I read it in two sittings back in late May, just before my newest child came earthside. It’s probably for the best that it took me so long, as I have since had lots of time to think about it and discuss it with friends who have also read it. I am going to refer to KWP as ‘Kari’ throughout because we are friends on social media and it would be weird to refer to her as ‘Wagner-Peck’– I tried it, it was weird, I edited it. Warning: I personally like to know what I’m getting into and appreciate spoilers. If you do not, beware, as there are spoilers ahead!

Not Always Happy reads in the style of Kari’s blog, A Typical Son, which I do not keep up with regularly, but I do read whenever I am reminded of a new post. It’s like sitting over a cup of coffee with a mom friend and letting her narrate the story of her life without interrupting, parenthetical jabs at villains and all. It’s a smooth and easy to read story telling, making it a very accessible read in a number of ways. Kari creates colorful characters of the people in her life, but the most vibrant character is her son, Thorin. Her blunt and honest portrayal of her own emotional process, from fostering to adopting Thorin, then again as he transitions from Early Intervention to school and from school to unschool creates an intimacy between her and her reader– I was compelled to send a message to her in the middle of the night to thank her for a passage that left me in tears. Just as she sees her son, so I see mine, in a world where no one seems to get it, even other parents of children with Down syndrome sometimes.

As Kari writes about the process of fostering a child (Thorin) who is not yet up for adoption because of a hearing postponement, with the desire and plan to adopt him, she opens up about her somewhat secret wish that family reunification won’t work in his case. I’ll be honest, it was uncomfortable for me to read and process this because I feel very strongly that the focus of fostering should be to support family reunification whenever possible. Kari acknowledges this in the book as well. Mothers who have survived or are surviving abuse, are lacking mental health supports, mothers who are disabled, mothers living in poverty– these are the mothers who are too often revictimized by family courts and social workers, and their children suffer too. My heart wrenched for Kari and her husband, Ward, as much as it did for Thorin’s biological mother, even understanding that a terrible failure in parenting led Thorin to be placed in protective care. As ever, it was most likely a series of failures, some that his biological mother was the victim of, and some she perpetrated. It’s never simple, so I went ahead and felt all the different ways a person could to make sure I covered the bases. I already knew the end of the story– that Thorin is a thriving kid living a great life with parents who truly seem to understand him, but it did not stop me from feeling suspense at the constant uncertainty they faced.

As I sat on the edge of my glider feeling suspense about the adoption, my stomach twisted thinking of Thorin’s biological mom. Has she read this book? Will she? Will her heart break? Will she fall in love with him in a new way through Kari’s eyes? Will she resent or feel ashamed at the story being told? How will this notoriety affect her? What is her story? When Thorin reads this book, how will he think of his biological mother? I am thankful that the most vulnerable parts of this story are kept from me. They are Thorin’s to tell, or not, in his own time and way, and I’m glad Kari believes that too. There is a discomfort in not knowing the details, but I think it was handled as best it possibly could.

As I read about Kari falling in love with Thorin, I connected deeply to the anecdotes she shared, from bath time to eating snacks in the grocery store together. I have always felt that as a mother I am in a constant state of falling in love with my children and the seemingly new people they are as they hit each new stage of development. I did not expect that experience to so seamlessly blend with Kari’s descriptions of falling in love with toddler-Thorin for the first time, but it did, perhaps especially because my son with Down syndrome was the same age in real time as Thorin was in the beginning of the book, and they share a number of charming characteristics. For weeks after reading, each time my son answered me with a definitive “yiss,” I heard imaginary toddler-Thorin in my head affirm, “yessith!”

A superpower I have developed since my first son was born, is the ability to read the faces of people we pass on the street and determine whether or not I hate them based on their reaction to seeing his face. The handful of times I have been in public without him, I have searched the faces of passers by just as intently, and found that the reactions he and I get are dramatically different than those I get when I am alone, with my teenage daughter, or with my other son who does not have Down syndrome. I feel vindicated that my excursions without him prove I’m not imagining it, but also heartbroken. In Not Always Happy, Kari writes, “I knew it had to do with Down syndrome somehow because in our short time with Thorin most things people did that were rude or offensive had to do with Down syndrome.” Yes. Add to the list the weird and awkward things people do as well. As Kari describes her early experiences with people’s strange ideas and outright discrimination, I nodded along, having shared similar experiences, thankful for the validation.

One of the coolest characters Kari introduces is Jade, Thorin’s fiercely protective older sister who is also living in foster care. Jade has the cynicism of a hardened New Yorker, and the fearlessness of someone who has already walked through the fire. Jade tells Kari she often gets called brave by adults when they hear how she went on her own to find help for herself and her baby brother; her courage in demanding quality care from adults for Thorin is even more impressive. She maintains a presence in his life and doesn’t hold back when it comes to his well-being. Jade has so many of the characteristics I love in my own children, and ones I hope they are able to learn without walking through the fire too. I love the way Kari writes about her with the respect she deserves and has earned. It’s one of the many ways the respect she has for children shines in her writing.

The majority of the book is dedicated to the trials and tribulations of navigating Early Intervention (EI) and transitioning into public schooling. Their story is so familiar I think I might have been able to guess many of the brick walls they’d hit along the way, and yet the storytelling is fresh and compelling. From the outset of their journey as new parents, Kari and Ward find that they expect Thorin to receive what he needs and be treated as, you know, a regular person, but every person they interact with in the different systems disabled children are shuffled through patronizingly shuts them down. In EI they are in a fight from the get-go for services that will help Thorin in preschool, such as physical therapy; once he is in preschool, they are in an uphill battle with an outdated, exclusionary, and prejudiced structure– not to mention therapists and teachers who range from overly “helpful” to downright abusive. I am navigating these systems myself, and seeing further evidence that the problems my family and I face are everywhere is both vindicating and enraging. Kari’s style of writing interjects much needed derisive humor– I hope to channel her as my inner voice the next time I’m sitting in an IEP or 504 meeting.

As Thorin moves into public school he is fighting for his place and his parents are alongside him fighting every which way for him to be treated as equal to his peers and given the supports needed to do well. Again, this story will be predictable to parents of disabled kids who have tried to work within the public school system. Kari stops at nothing to advocate for Thorin. She takes risks I find relatable, unafraid to send what I sometimes refer to as the “bad idea email.” It’s the one that goes out in the middle of the night when all your feelings are stewing together in a mish mash of fear, anger, frustration, powerlessness, and a fierce protectiveness. Ultimately, Kari and Ward choose to leave the public school system and transition to unschooling (my personal favorite style of homeschooling)

I already knew the end there, too, because I came to know of Not Always Happy by reading Kari’s media contributions, social media, and blog posts after Thorin had begun unschooling. I wish she had spent more time writing about unschooling and their experience of it, as I think parents of children with Down syndrome who are as fierce as she and I might be afraid of it and feel that it is a disservice. In reality, I think unschooling has the potential to foster immense creativity, knowledge, and especially autonomy, something disabled children are so often robbed of, starting in EI and compounding through school. I love seeing snippets of what unschooling looks like in their family, and I think it would be worth sharing with a wider audience.

My biggest concerns, as ever, with writing about disabled children have to do with their privacy, dignity, and right to tell their own story. I can be very critical of the way people choose to share about their lives raising a disabled child or children. At a minimum, I believe parents should write in such a way that when their children are grown, they will read it and feel tremendously loved, respected, and valued. They should look at our body of work and feel proud of what we have done. I recently wrote a draft of a chapter for the book I am working on that advocates, amongst other things, waiting to share stories publicly until our children are adults and can be a part of the process in a more directive way. Just because a 10 year says it’s okay to share an anecdote doesn’t mean that same kid won’t be mortified people know it in 5 more years. Sharing our children’s stories comes with great responsibility. In sharing their stories, people they have never met feel a sense of intimacy with them. What are the repercussions of that?

I came to this book already respecting Kari a quite a bit for the way she writes about Thorin and their lives together. I think she really toes the line of giving her reader access to their family and protecting Thorin’s story, (although he may disagree about the potty training bit in a few years). What is striking and notable about both the book and her other writing, is that it is clear that she has a deep understanding of and respect for Thorin as a person. She sees him when others don’t. I expect that when he is grown he will read these words and feel affirmed, he will feel her love and confidence in him rather than feel embarrassment or that he has been a burden.

The most important thing this book does is give a template to parents of children with Down syndrome, or any disability really, to truly see their child, and see them as equal. It’s a huge gift she is handing to us in her writing, and I believe it is worth the risks she takes to tell these stories intimately and urgently. I cannot impress enough how powerful this aspect of the book is. Further, it can help people who don’t have a close relationship with anyone who has Down syndrome have a chance to look through that lens themselves.

Don’t mistake this for your run-of-the-mill mommy blog monetizer or yet another story of an angel martyr mother to a burdensome disabled child. Not Always Happy is a beautiful act of solidarity with other parents and their children with Down syndrome, and a powerful work of advocacy. 

Disability Justice, Down syndrome, Parenting

T21 and Competitive Parenting

Lauren Smith-Donohoe

I was a parent for close to 13 years before I remember experiencing the passive aggression of competitive parenting. I had my first child very young and had a handful of first-time mom friends who were also young. We had conflicts, of course, but I can’t remember us ever pitting our similarly aged children against each other. My daughter occasionally experienced a spontaneous math test or interrogation of what exactly we did all day when she was homeschooled, but never from our friends.

Once I had my second child and was introduced to the Down syndrome community, I knew that social relationships with other parents would be really different, and they are. We lost some old friends; we got closer to some old friends. We made lots of new friends. We now maintain friendships with folks whose politics and personal beliefs are far different from ours and those of our long time friends. We have ongoing friendships with people way outside our class demographics as well. These types of friendships often don’t last without some kind of a bond, and ours is that our families each have a member with Down syndrome. We may not be family to each other, but in a way, our kids are family to each other, and they have a bond we won’t ever know. It’s really great, and it’s really hard sometimes too!

I worry about navigating potentially awkward social situations with people more educated or monied than me or making an offhand remark that sparks a political discussion we are never going to agree on. I worry about having people over to my house and if it will be nice enough or if they’ll look down on us. I did not ever worry that anyone would try to put my kid up against theirs in a developmental competition, however, until those microaggressions began in my child’s first year. What really took me off guard, was that aside from one very strange cafe owner, that competition came from other parents in the Down syndrome community.

It doesn’t just happen to me, of course, I see it in online groups and among other parents. A parent of a child with T21 says something that their child is working on, and other parents respond simply by saying at what age their child picked up that skill– as if such a thing is relevant anyway, with no recognition or support for the success of the other child. Other times parents chime in with judgmental and even fear mongering advice about when to get glasses or what therapy is absolutely essential in ensuring a child’s success in such a way as to show they know more, do more, and their child is in better hands.

Here are some examples of casual competitive parenting within T21 playgroups:

  • A 17 month old with T21 is army crawling at a playdate. The mother of a different toddler with T21 whose child began walking at 15 months asks “How old is he?” with a slightly shocked tone in her voice, and follows up with pointed questions about his physical therapist and a story about how her child began walking and running because of all the specialized therapy she provided.
  • When two similarly aged children with Down syndrome are playing together and one parent demonstrates a skill their child has learned and asks, “Is your child doing this yet?”
  • A T21 parent uses social media to celebrate a new skill their child learned, while another T21 parent makes remarks exclusively about their own child’s accomplishments, perhaps even directly comparing, without so much as acknowledging the accomplishment of the child being celebrated in the post.
  • A parent seeks advice from another parent of a similarly aged child, but with the intention of using the encounter to highlight or list their child’s skill set or compare in order to “catch up” or demonstrate superior skills.

It doesn’t just happen with motor skills or communication milestones, either. There can be a one-upmanship when it comes to types of therapies, amount of therapies, extra lessons or classes, and even whether or not a parent is successful in finding an inclusive placement for their child in school. I have even seen parents self-righteously proclaiming their children as “high-functioning” to other parents. (Side note: functioning labels are really harmful to all disabled people, please don’t ever use them!)

Of course, this type of behavior exists in all areas of parenting. Even empty-nesters compare the careers of their children or grandchild counts amongst one another. Around the time I had my second child, my first child enrolled in a high-performing school populated with a large number of wealthy students whose family culture includes countless lessons, expectations of perfection in every area, and the resources to pursue that excellence. There is an unacknowledged competition amongst students and parents there too. Countless articles and blog posts demonstrate that this is a much broader cultural problem.

There are a number of specific things wrong with competitive parenting as it occurs in circles where disabled children are concerned. First and foremost, it is a microaggression against a disabled child. Children with Down syndrome are an oppressed minority group, and those claiming to be their allies should never use their energy to degrade them, regardless of how friendly and casual the conversation is made out to be. However insignificant it may seem to that parent at that moment, it is an act of violence against the child. Moreover, it’s a microaggression against their own child. When a parent pits their kid against another, it is done out of insecurity. Can you imagine being the kid whose parent always wants them to be on top? That’s an impossible and exhausting pressure, not to mention the pain of knowing your parent is insecure in your abilities.

Secondly, it’s a microaggression against a parent who is constantly advocating for their child in an ableist world. As if parents of children with Down syndrome don’t experience enough anxieties with the pity of parents to nondisabled children, the exclusion of their child in many settings, and a constant worry that they aren’t doing things the right way or providing enough supports. It is particularly hurtful to experience this treatment from a community that is supposed to offer refuge from that.

Lastly, it perpetuates the very ableist culture that rejects and excludes our children with T21. Modern western culture is achievement-oriented, competitive, and ranks children’s worth according to their abilities. We should be challenging this practice in every setting, rather than recreating it on a small scale in our own communities.

I am so lucky to get to watch dozens of babies, toddlers, and young children with Down syndrome grow up in community with my child. It is well worth jumping over the social hurdles of coming from extremely different backgrounds and perspectives to get to know these kiddos and their families (and even extended families). Some of them develop skills and hit milestones on the early side, and some on the late side. Some have ongoing medical concerns and some don’t. All of them are incredible people who bring me joy constantly. 

I would encourage parents of children with Down syndrome to work to build these types of relationships and to work extra hard not to fall into the pitfalls of modern, individualist, achievement-based parenting norms. Celebrate your child with T21 and their accomplishments! Celebrate your friend’s child with T21 and their accomplishments! Those accomplishments have nothing to do with each other except that celebrating them lifts up folks with Down syndrome while comparing those accomplishments drags all folks with T21 down. In a broader culture that does not value or acknowledge the lives and accomplishments of people with Down syndrome we can and should be celebrating constantly– whether that life or accomplishment belongs to our own child or someone in their T21 family. Your heart is big enough to love all the children in your child’s T21 circle and find joy in what they do, I promise.

Down syndrome, Parenting

Down Syndrome Diagnosis: What you Really Need to Know

Lauren Smith-Donohoe

When a new parent receives the news that their baby has Down syndrome, it is not always delivered in the best or kindest way. Sometimes, a geneticist who doesn’t have any real-life knowledge of people with Down syndrome feels an obligation to make speculations on the rest of that baby’s life when they are still in the womb or freshly born, based on outdated ideas about how disabled people live in the community. Other times, a new parent may get a very kind and compassionate diagnosis, but then turn to Google for more information and become inundated with information that may or may not be accurate, and is often overwhelming. Many hospitals still give out copies of Babies With Down Syndrome, a well-meaning book that outlines nearly every possible health complication a baby or child with Down syndrome can have, causing parents to worry unnecessarily about their new baby. Some people think medical information or information about government services is the priority after a child with Down syndrome is born, and that couldn’t be further from the truth. A baby was born! A whole new person exists in the world because someone worked to bring them here with blood, sweat, and tears.

Here’s some of the most important information your child’s geneticist may have forgotten to mention:

–There’s an impulse you can have when you have a baby with Down syndrome to spend a lot of time trying to imagine what their life will be like– what they will do, what they will look like, what will their adulthood be like, and so on. This does not happen for most parents of typically developing children at this age, nor really should it happen with anyone. Your child is a baby. They have tiny fingers and toes for kissing, sweet smells in their neck, and squishy cheeks for kissing. I bet they have the sweetest breath you’ve ever smelled. For some reason, doctors and geneticists often want to give what they perceive as an “accurate” picture of the entire life of a person with Down syndrome when they are fresh out of the womb. And just like it’s weird to do that to other kids, it’s weird to put that on new parents of a baby with Down syndrome. Often times these professionals have no experience with anyone with Down syndrome after early infancy. They may not know anything about how people with Down syndrome interact within their families, communities, or schools. They may not have any idea what opportunities exist for people with Down syndrome. They’re not qualified to give information beyond current medical statistics, and even then their delivery can leave something to be desired.

All people have strengths and weaknesses. That’s true of people with Down syndrome as well. No parent can predict what their child’s strengths and weaknesses will be, and they shouldn’t.

Enjoy the cuddles and snuggles, rest in your postpartum, don’t worry so much about anything that is going to happen beyond 6 months from now. Just like with any other kid, you can’t really know anyway. Many of the guesses you could be making might be based on stereotypes or outdated ideas. Spend your time marveling at those bitty fingernails and baby sighs and try not to invent a future for them just yet. The future has never been so bright for people with Down syndrome– let that be enough for now. This time is precious.

-It is common for children with Down syndrome to be born completely healthy. While there are health complications associated with Down syndrome, many children with Down syndrome are healthy and do not need medical intervention. Babies who do need intervention, such as surgery, generally fare very well and go on to be healthy throughout childhood and adulthood. Of course, some folks with Down syndrome have medical issues that can be ongoing, but there is a lot of parent support out there if that’s a bridge you need to cross with your child, and modern medicine has a lot to offer in the way of well-tested treatments by doctors with practiced hands.

–-There’s a lot of pressure to intervene in the infancy of a baby with Down syndrome. Early Intervention is often suggested before your head stops spinning, and people are telling you about bureaucracies you are going to have to fight and toys you should buy and exercises you should do and so on. The reality is that doing a ton of therapy, exercises, and intervention isn’t  backed up very well by clinical research. The most important thing you can do for a new baby, Down syndrome or no, is to be responsive their cues and tend to their needs. Sometimes babies with Ds have more subtle cues, so you have to pay a little closer attention, but they want the same things as all babies- to be held, to be loved, to be talked to, a baby massage, milk, clean diapers, to sleep on your shoulder, and so on. A lot of parents feel pressure to start therapy immediately or to “stimulate” their baby in some way. It’s okay to let your child just be a baby! Your job is to love them and communicate with them, and that does more than all the Early Intervention in the world ever could. Consider waiting to introduce the world of therapy to your baby, and do it slowly and purposefully when you do, looking to your child for cues about where they need support, rather than checking off the boxes a mommy blog tells you that you should or staying up all night creating a registry of specialized toys you are sure you need to buy to assure your child’s future.

There is nothing you can do that will ensure your child is exceptional. This is true for all children, but because therapy and Early Intervention exist for babies and toddlers with Down syndrome, sometimes people begin to believe that if they do enough things they can ensure their child will be a superstar of the Down syndrome world. Rather than pushing your child to be the top of the heap, focus on the ways in which they are exceptional to you. For example, how they light up when they see you, the sound of their voice, the way they melt into you when you snuggle up to watch a movie or the adorable way they hold their hands when they sign “more.” Your acceptance and approval are what will be important to your child in life, so let go of the search for approval or status with others.

-People are going to say really weird and sometimes rude things to you. This is a reflection of their hang-ups, not of you or your child. It’s okay to distance yourself from people who do this or set boundaries around how much energy you devote to educating people. Just remember to stay close to those who want to care for you and celebrate your child’s life. It can be you and your baby against the world, but it doesn’t have to be. Plus, it feels good to see other people adore your child. I promise you people will be lining up to adore your child soon enough if they aren’t already.

-Your baby is going to reach all their milestones in their own way, on their own timeline. That’s true for any baby, but for kids with Down syndrome, the spectrum can be a little wider and taller. Our culture can be really hung up on typical timelines, but the age at which a child develops a skill cannot predict anything about their future life or skills. It is simply the age at which they mastered the skill. Resist the urge to compare your child to others, even those with Down syndrome. Most children tend to focus development in specific areas for a time and switch around. Your late walking toddler may be a great communicator! Embrace a life where your baby takes the lead on their own timeline. It’s liberating to truly let go of these pressures. Celebrate the skills your child masters as they master them– you will find they are delighted to celebrate with you!

-A new person exists in the world– a beautiful baby! Congratulations! Welcome to the world! This little person is a living, breathing, miracle. There are countless possibilities for them, and for you. Your relationship with them has the potential to bring untold joy to your life and those around you who get to witness it. They will have their own, nuanced perception of the world and everything in it, and if you pay attention, they’ll share it with you.

 

Parents of children and adults with Down syndrome, what do you wish you had known when your child was diagnosed with Down syndrome? Please share in the comments!