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Dealing with Developmental-Delay Deniers

By Amalah

Amy!

I wrote to you some months ago suspecting my daughter has a speech delay. Well, I had her tested and, yeah. She’s 17 months old as of today and she has the speech abilities of a 4 month old, based on the initial assessment. They’re going to do a more in depth evaluation, and the coordinator cautioned, “Now, that number might go up to, say, 6 months. But don’t expect it to magically creep up to 12 months or anything.” But she’s laid out some wonderful programs that are available to help her, and I’m going to tackle the problem head on and whip its ass.

I’m devastated. I cried for twenty minutes after the coordinator left our house. This is my baby girl, my heart, my soul, my everything. The problem I’m having is my boyfriend. He went on to tell me that “See? She’s not delayed! That number will go up and you’ll see she’s just fine. Why, my son [previous marriage] didn’t talk at all until he was two!” My first instinct is to scream at the top of my lungs “SHE IS NOT FINE, DAMMIT! The next person who tells me again that she’s fine gets my foot across their mouth! The assessor said she’s not fine, and quit comparing her to your kids! If your son couldn’t talk until he was two, why didn’t you do something?!” But, I know he’s just trying to make me feel better and in his own way telling me it’ll be alright, so I just clamp my maw shut. He just doesn’t seem to think there’s anything wrong with her, and it’s driving me crazy. He has said IF she’s delayed (if?! Hello! She IS delayed, gahhh!) then he’s on board with speech therapy, but that he still doesn’t think there’s a thing wrong with her. His family also shares his views, and because they’re both nurses, brush me off, all superior-like.

How do I convince the three of them that once and for freaking all SHE. IS. NOT. FINE? I really, really want to smack the next person who tells me that but alas, it’s not polite and might even be illegal. I feel like it’s an insult to me, my child, and the wonderful people helping us when they tell me that.
Thanks, and BTW – I just want to say you’ve big a BIIIIG help and a BIIIIG inspiration to me.

Thank you!

Sincerely,
H

Oh, sweeeeeeetie. I hate calling other capable grown women pet names but I hate it slightly less than typing out [[[[[hugsssss]]]]], so pet names and virtual head pats it is. I’m really sorry you have to fight this fight. But I’m really happy that your daughter has you to fight this fight for her.

I still get it. The “he’s FINE. there’s NOTHING WRONG WITH HIM.” thing. Um. For real? You really wanna argue with me and my binder full of evaluations and second (and third, and fourth) opinions about those evaluations? You really think the public school system just hands out free special education preschool to kids who are just “fine”?

These developmental-delay deniers seem to fall into a couple categories, complete with overlap:

1) THE DEFENSIVE. By stating that yes, your child has such-and-such of a delay, you often draw the delays of other children into sharper focus. Your boyfriend’s son, for example. I cannot tell you how many times I heard the “my kid didn’t talk until he was four and couldn’t handle preschool until he was five and he’s just fine now you’re pushing him too hard and expecting too much blah blah blah.” They may even think they’re encouraging you, but the defensiveness under the surface is usually pretty transparent. Like you said, if your child didn’t talk until he was two, why didn’t you DO SOMETHING? And that’s a question a lot of parents simply cannot bring themselves to answer. You are calling their decisions into question, the idea that maybe the way things were done 20 or 30 years ago was just flat-out wrong, the idea that they let their child down. So instead they blame today’s schools, society’s expectations, neurotic parents. “If you just turn off the TV and read her more books, SHE’LL BE FINE.”

DEALING TACTIC: Smile and say that you are certainly optimistic that she will be fine, tell them how happy it makes you to hear their success story. If they continue to press the issue, say you have decided to take the “better safe than sorry” route and take advantage of all the wonderful programs available to her these days. Realize that you may never change their minds, but can only do what you think is best for your child.

2) THE UNINFORMED. Your boyfriend is putting too much emphasis on VERBAL communication. Four-month-olds don’t talk. Neither do most 12-month-olds. Some 17-month-olds do, while others don’t. But children of all of those ages still COMMUNICATE, and your daughter is not COMMUNICATING at an age-appropriate level, or anything close to it. That’s what her assessment measured — more than words. It’s eye contact, coos, certain consonant sounds, mimicry, facial expressions, gestures. For some reason, people really seem to think that communication is a single leap from non-verbal to verbal. A baby goes from completely silent to “dada” and “mama” and “juice,” when really it’s a process (with measurable milestones) that starts from birth.

DEALING TACTIC: Well, you fight ignorance with knowledge. If your boyfriend isn’t too deep-rooted in his denial, encourage him to do some reading. Read stuff out loud to him, if you have to. Fill out a communication milestone checklist (birth to age two) and show him that hey, it’s not just because she’s not saying “doggy.” Make sure he’s present at any and all evaluations going forward and request that nothing be sugarcoated in his presence.

3) THE OVER-INFORMED. Sometimes it seems like folks who work in the medical community are the biggest deniers of all. Nurses and doctors have seen worse, much worse. They’ve probably diagnosed much worse. You’ve just unwittingly accused them of “missing something.” In a similar vein, I had a friend — a very smart, highly educated friend — who probably read more about autism than I have, because it frightened her and she needed constant reassurance that her child did not have it. You read enough checklists you either a) start seeing autism EVERYWHERE, or b) find enough things that *don’t* fit your child to cling to and start willfully ignoring everything else.

DEALING TACTIC: Similar to the Defensive folk, really. Smile and nod, and then do whatever the hell you think is right anyway. Do not engage in an argument, because really, it’s not their call. Until your boyfriend gets a little more with the program I’d say don’t even discuss the topic with anyone else who is just going to tell him what he wants to hear and undermine the heaping dose of reality that he really needs to hear.Realize that you may never change their minds, but can only do what you think is best for your child.

4) THE POLLYANNAS. “She’ll be fine! She’s just stubborn! You heard them! She’ll improve on her own! She doesn’t talk because she’s SO SMART! It’s always the smart kids! Einstein didn’t talk until he was blah blah blah.” Look, no one wants to hear that their baby is anything less than perfect. (I keep repeating a line from my interview with Quinn: “No baby is perfect, but we’re allowed to think most newborns are because we don’t know them yet.”) No one wants to admit that there’s something wrong or different or off about their baby. Hell, I still gulp and stammer when people ask me where Noah is going to school these days and get confused because how can a preschooler go to the public school? What was the name of that afternoon program? I’ve heard of that. Isn’t that a school for like, autism and Down Syndrome or something? I still get the wind knocked out of me with every new evaluation because sometimes I still secretly think this is all a big mistake and SOMEBODY, SOMEWHERE, is going to look at Noah and declare him “cured.”

DEALING TACTIC: I’ve probably repeated this phrase to every single person I know, at some point. “It can’t hurt, it might help.” Speech therapy is not strapping the kid to a chair, forcing them to look at flash cards and baby sign language for hours and hours, Clockwork-Orange style. It’s a nice lady who brings toys over and plays for awhile. It’s fun. It teaches you — the parents — a lot about the individual learning needs of your baby and how to get the most out of your time with them. It wasn’t fun to downplay Noah’s needs with a shrug of my shoulders to people and sound like I was saying “oh, what the hell, let’s try speech therapy for KICKS!” But it seemed to help preserve their boundless optimism and reconcile the fact that a smart, amazing, wonderful kid could STILL BE ALL THAT, even while in speech therapy. That’s not really such a bad thing, if you think about it.

While I’d skip worrying about your boyfriend’s family members, you do need to bring him back down to earth, a little bit. Again, he needs to BE THERE during your next assessment and hear this stuff in person. Make them repeat the “bad” news so he doesn’t gloss over it again. Make sure, when the eval results arrive in black and white (XX% DELAYED, COMMUNICATION SKILLS OF A X-MONTH-OLD, etc.), that he sits and reads them, and takes them in. There’s something extra-jarring about seeing it typed out in clinician-speak, even if you knew exactly what was coming.

It’s a tricky path to navigate — just because you admit that your child has a special need does not mean you suddenly cease to be their biggest cheerleader. In fact, it’s really the opposite. You learn that cheerleading isn’t enough, nor is simply believing in their potential. You have to advocate for them, fight for them, ditch any and all preconceived notions about parenting, and figure out that a cookie-cutter approach to raising kids (“what was true for child A does not mean it’s true/right/appropriate for child B”) is not in anybody’s best interest. Parenting a child with a delay or special needs requires a TREMENDOUSLY strong backbone and a TON of confidence in your decisions — ironic since having a special needs child often has the opposite effect, thanks to judgmental Other People and the mental ass-kicking and constant second-guessing we do to ourselves.

With time, some people do come around. We have family members who have finally stopped trying to point fingers at the wrong things (his diet! his teacher! he’s just so SMART!) and accept Noah’s diagnosis, and educate themselves on how they can better interact with him. Others needed to see the results of our hard-fought-for therapy and programs to finally “get” that things weren’t right before. I promise you I very rarely want to punch anyone in the neck, these days.

In the end, however, you do learn that their opinions don’t matter, even if they make you roll your eyes so hard you sprain something. What matters is that you never, ever let those dissenting opinions stand in the way of getting your daughter the help she needs. And while I don’t know you personally, I’m PRETTY SURE that’s not going happen here. Go get ’em, mama.

Photo by mockstar

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to [email protected].

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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Melissa
Guest

Just putting it out there – that the pollyannas of the world are sometimes really well-meaning. For instance, my cousin felt her child had a speech delay. Called all the right people, got set up for early intervention, and they all got on track. My Mom, who raised 4 children, simply did not understand that early intervention was an option – and said some really well-meaning but I’m sure grossly annoying things to said cousin. Eventually, it took me saying “Mom don’t you think its her call?”. Then she got it. When I was young my brother was sick –… Read more »

Stephanie P.
Guest
Stephanie P.

I love reading something that has been rolling around in my head for the last three years. My daughter was diagnosed with sensory perception disorder. We are still looking at asperger’s because of some social interactions in school and community settings. There is nothing I would rather do than support my daughter and demand the best for her. I would do this regardless of any special need she might have. To have others tell me that the the diagnosis is wrong or to make light of the situation is a constant battle, but one I am willing to fight everyday!!

Meghan
Guest
Meghan

She should know the her boyfriend’s family who are both nurses, unless they are specifically trained in child development, they probably don’t know anything about what is, and is not appropriate for a 17 month old. So she probably knows more than them on this subject. Good luck!

cagey
Guest

Up until 2 weeks before my great-uncle died, my grandma swore he would just get better if he would “only start eating right.” He had liver cancer, folks. But, he was her baby brother and he was 69 (still a youngster, in our family of octogenarians.) It was hard to keep hearing her seemingly wave off the seriousness and I was SO frustrated with her at the time. Now, I realize that she was devastated and that was how she had to cope with it. Even after my nephew’s diagnosis of autism, my sister still gets some Pollyanna’s advice. After… Read more »

Bethany
Guest
Bethany

I can agree with the well-meaning. I have no idea what I’ll say when one of my friends has a kid who is delayed (I’m kind of assuming at this point that it’ll be inevitable for at least one of them). My cousin has light aspergers and so my gut instinct (I’ve thought a lot about this since I started reading Amalah) would have been to point to him and how he’s awesome and great, and earning his college degree and having friends. Noting to myself now to not do that. So… how should a person respond? “How can I… Read more »

Sue
Guest
Sue

Spot on with the medical professional bit. Though the above commenter should know all nurses in a BSN program do spend quite a bit of time of proper child development. My mum and I are both nurses- we both have a tendency to blow things off unless they involve a missing limb. In my years spent in hospitals I do know one thing is for sure, a mother’s intuition about her child’s problems or perceived problem IS ALWAYS worth looking into to. Bottom line, you know your child- follow your gut. Good luck!

LauraL
Guest
LauraL

My son was diagnosed with Down syndrome prenatally after an amnio. And STILL, I got a few people saying that maybe it was wrong, or maybe he would be cured. My grandmother’s Sunday School class (bless their hearts) prayed for … I’m not sure what. In retrospect, it’s really pretty funny. (As is the person who told us they hoped he had a “mild” case of it. Mmmmmm-hmmmmm.) So yeah, there’s a lot of uneducated or miseducated people that you have to deal with. Practice smiling and nodding, and throw in the occasional, “Really? Well, that’s an interesting perspective.” And… Read more »

Mouse
Guest

My partner and I are very much of the “better safe than sorry” category, especially when it’s something like speech or OT, which are non-invasive treatments. My in-laws are our son’s biggest cheerleaders, and they were very much of the belief that he was perfectly fine and we were worrying too much. Then he started OT. My mother-in-law has told me several times now how right we were to do it and how surprised she has been by the changes. (Have to give her credit for being willing to say all this.) It helped that my partner and I have… Read more »

Jessica V.
Guest

Amy – your response is so right on! I had a similar situation with my oldest son, who had pretty severe plagiocephaly (deformed skull) and torticollis as an infant. My in-laws didn’t want to believe that anything was wrong with their perfect grandson – even though the deformity was pretty obvious (they’d just brush his hair over it and say “see, you can’t even see it!). Because of the disorder, he was a little delayed with some physical milestones like crawling and pulling up, so we went to physical therapy to help get him back on track (he also wore… Read more »

EI-EI-Elizabeth
Guest
EI-EI-Elizabeth

Hi, Heidi (and Amalah)– I am an early intervention (EI)specialist, working with kids birth-5 with special needs. Amalah and the other commenters have already given tons of helpful advice, but from this side of the (massive and tedious) amounts of paperwork, a few thoughts: 1) Amalah touched on this with her comment about sugarcoating. In our profession, best practice dictates that we use a “strengths-based” perspective, i.e., present not-so-great things in the larger context of great things. It’s a lovely idea, but it does leave some wiggle room for the Pollyannas/defensives/etc. It is totally OK (and not uncommon) for you… Read more »

Auntie
Guest
Auntie

Elizabeth the EI specialist, I REALLY wish you lived in the same city as my nephew, a four-year-old with a severe language delay and now serious problems adapting to the preschool environment. All the family near him — his parents included — are kind of Pollyanna-denier hybrids and even when they do try to get help, e.g., language therapy and special preschool, they find reasons to pull him out. And I’m a couple thousand miles away and not really in a position to say anything even if I were closer. I’ve actually become obsessed with my own 10-month-old’s developmental milestones… Read more »

Quinn
Guest
Quinn

Yay! I helped! I can’t help much more though; Amalah did a bang up job. Also I mostly have problems with Polyannas. It’s a bit hard to deny there’s a problem when HI, ONE HAND HERE. My mother is a giant Polyanna. (Apparently I am going to keep talking even if I can’t help.) (I blame the wine. Thursday is PRACTICALLY THE WEEKEND.) She’s constantly telling me that Griffin is going to be BETTER THAN FINE, he’s going to be STRONGER because of the missing hand, he’s going to be DRIVEN to PROVE himself. Hi, Mom, thanks, but can you… Read more »

Tilly
Guest

I have a 22 month old son with hypotonia, but no true diagnosis. He is not yet walking and has been in physical therapy since May through EI. We just recently added an additional 30 minutes of therapy through an out-patient rehab. I am guilty of being a “Pollyanna” and I am the mom of a developmentally delayed child. I think I owe him that much, especially with no diagnosis. We are doing everything in our power to help him. The rest is up to him and a higher power. While I do believe there are children with delays who… Read more »

Grace
Guest
Grace

I am in grad school right now to become an SLP and I cannot tell you how many people ask me “which test should they give him so that I can get a diagnosis of xyz” because they are in such denial of the bigger picture, or “he’s just a little behind, I’m sure he’ll be fine—right??”. It is incredibly myopic to believe that one simple test can change a kids life and they way s/he learns or that everything will be ok because you want it to be. Kudos to you for trusting your gut and getting the help… Read more »

EI-EI-Elizabeth
Guest
EI-EI-Elizabeth

Bethany–I don’t think there’s anything wrong with optimism, in fact, it’s crucial. My experience with families is that it’s more about denying the family’s feelings. It’s one thing to say that you believe the child will be successful, it’s another thing entirely to say that the child doesn’t need help and mom/dad should be ashamed for thinking their child is anything but perfect. If you’re considerate enough to be thinking ahead about how to be most helpful, I bet you instinctively won’t cross that line. And I don’t think you can ever go wrong with some form of “how can… Read more »

ksmaybe
Guest
ksmaybe

I love EI-EI-Elizabeth’s response 🙂 We’re in the midst of speech and developmental therapy for our son now. Honestly, I’m even of the opinion that if we did nothing our son would be ‘just fine’, but I think that getting him some help (and he is blossoming already with speech help) can only help and get him to ‘just fine’ sooner and more smoothly than waiting 🙂 So far we just haven’t made an issue of talking about his therapies with family, just mentioned it casually if it comes up, no fanfare, no big deal. And, so far, no one… Read more »

Susan (5 Minutes for Mom)
Guest

Moms do know best.
For me it was the opposite scenario. My Julia didn’t speak until she was 2, but she signed a ton and I just had a gut feeling she was okay. Her personality was so quiet and shy, it just seemed to make sense for her not to talk out loud until she was really ready. Then when she did speak, her vocab grew rather quickly.
I had other people wondering why I wasn’t more worried. But sometimes I think a mom just knows.
Good for you for getting help early.

Jenn
Guest
Jenn

This is because people don’t get it! They think if you say your child has a delay that your putting them down or you feel less for them. Hate to tell everyone- but none of your children are PERFECT- some of us just find out sooner than later that each of our amazing children have some imperfections. My son is 18 months and doesn’t yet speak. We have just recently got early intervention involved, and hopefully sooner than later, we’ll get him up to snuff. Everyone I mention it to says I’m crazy- parents today are crazy and that 30… Read more »

Peg
Guest
Peg

Good for you for recognizing that there is a concern and wanting to do something about it. I am a Kindergarten teacher, and I can tell you that there are a LOT of parents out there who fall victim to the deniers out there. Right now I have one child with a speech problem who has a mother who full out denies it. She has even consulted her “friend” who is a “specialist” who disagrees with our school specialist on whether there is anything wrong with the child. Accepting that there is an issue and deciding that you want to… Read more »

bo-peep
Guest
bo-peep

my sister went through this exact situation. her husband was all, “god you’re so neurotic the girl is fine” and friends were, “but she is so adorable” etc etc. Meanwhile my sister plunged into PPD because she KNEW that her daughter was unable to communicate with her. I remember her calling me in tears (she lived in another country so we couldn’t visit easily) and just sobbing her heart out because another mum had casually said at the coffee shop “you know, they understand every word we say” and she felt insane because she was convinced her daughter understood nothing.… Read more »

Liz
Guest
Liz

I think it’s highly hypocritical to throw shade at people who side eye what you have to do for your child, while taking a dump on people who use flash cards and alternative education, doing what they need to for their own child. HIGHLY hypocritical.

Athena
Guest
Athena

I think my parents fall into ‘over-informed’, in a way. I was so blatantly obvious in my autism from day one, practically textbook and a bunch of behaviours that can’t masquerade under ‘normal for that age’. Basically, because my son didn’t present as slap-in-the-face blatantly as I did, surely he must be normal and I was just talking myself into it… sigh.