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On Special Needs & Siblings

Jun24

by

Hi Amy — I’m new to your blog but found my way to you because I also have a son (3.5yr) with a PDD NOS diagnosis. I got pregnant with my typically developing daughter (now 11 months) when I was still pretty much in denial about my son. Mind you he was diagnosed at 18 months – so yes, complete denial.

You likely know that the statistics of having an autistic sibling is at 19%. I’d love one more child but am terrified of the genetic lottery. Did these concerns ever play a factor in deciding if you were going to have multiple children? Clearly, this is a personal decision but this just isn’t a conversation I can have with my friends who have no idea the therapies, sleepless nights and overall work it takes to “manage” the life of a special needs kid.

Emotional landmines, ahoy!

Yes, you’re right. This is a very, VERY personal decision, and also a conversation I’ve personally seen devolve into warring, judge-y factions on more than one occasion. And frankly, some of the most passionate opinions actually came from within my circle of other special-needs parents.

Arguments For:

Autism is not a death sentence. Autism is not The Worst Thing Ever. By insinuating that I shouldn’t have another child because “WHAT IF,” you’re implying that my existing child is somehow (at best) lesser or a burden or (at worst) a child I would not have chosen to have in the first place if I’d somehow been able to “know” before I got pregnant. Children with autism can bond with and benefit from sibling relationships just like any child. Your denial over your firstborn has passed, so if you had another child you would be prepared to be proactive and move quickly to get him/her to the necessary interventions and therapies as early as possible, thus giving you all the chance of a successful outcome. And there are no guarantees for any family out there, because EVERY pregnancy is like playing the genetic lottery.

Arguments Against:

Money. Stress. Time. Worry. Picturing your “worst” day with a difficult child and multiplying it times two…or more. Diluting your resources (money, attention, energy) away from a child who already may need all you can give. An additional burden on typical siblings, who spend significant chunks of their lives in therapists’ waiting rooms and dealing with the social issues that come from having special needs family members, plus a feeling that their struggles/accomplishments get brushed aside or overlooked — not to mention the looming possibility of being “responsible” for a low-functioning adult sibling for the rest of their lives, should something happen to you and your spouse. And of course, a feeling of guilt from purposely bringing a child into the world knowing there was a high chance that life would be harder for them, yet doing it anyway because you just wanted another baybeeeeeee.

I am not here to tell you which arguments are right and which ones are wrong. Because I really don’t think it can be broken down that easily. I think there are truths — truths that are comforting and some that are hard to hear, yet no less true — from both sides. I personally know many, many families that have decided not to have any additional children following a special needs diagnosis, and I respect that decision and would never call it fearful or paranoid. They did what was right for their family.

Meanwhile, yeah. I went and up and had not one, but TWO children after my special needs firstborn.

(Note that Noah is currently without a specific diagnosis. I’m not entirely sure he’ll ever get one, because he straddles several columns without technically hitting enough checkboxes for any of it to be considered “clinically significant.” [THANKS, DSM 5.] If someone ever comes up with a name for a kid who’s like, half Sensory Processing and part ADHD and part Asperger’s we’ll go with that, I guess. In the meantime we bill our insurance with a half-dozen individual codes that don’t necessarily add up to a single, nicely-named total sum. So our situations are not fully equal here; I have no idea what our genetic statistical chances would look like, given our hazy set of “issues.” I believe the study, you mention in your letter, focused on families that had a very clear, specific diagnosis of autism and probably excluded kids like Noah.)

I got pregnant with Ezra when I thought our biggest issue was a speech delay, which turned out to be the tip of the iceberg. I got pregnant with Ike when we were in a pretty good spot with Noah, though in our heads, the timeline for adding number three was going to be like, a year or two down the road. Whoops. Surprise! How’s eight months from now look?

Would I go back and change anything? Oh, ho ho, hell to the NO. That’s…crazy to me. Regret is something I assure you I do not have. Of course, my subsequent children are both typically developing, more or less. (I say more or less because let’s be honest, ALL kids have their quirks and unique needs. I think “typical-ish” is probably the best any of us can hope for.) But imagining life without any of my boys does not compute, would never compute. On my toughest days with Noah, his brothers are my joyful rays of sunshine, reminding me that I’m not a total screw-up. On my tough days with my younger children, I look at Noah and simply marvel at how far he’s come and how grown-up he is. On the non-tough days (and there are so, so many of those, by the way), we are just like any typical family, full of noise and glee and kids who all amaze me in their own special way.

Of course, where I am now is not always where I was, emotionally speaking. When each subsequent ultrasound revealed another boy I did have a heart-in-throat moment because as you know, the study you referenced that found the 19% statistic also found that the risk goes double for males. I spent a lot of my pregnancies and their infancies stressing about that particular set of worries. (Of course, I’m sure I could have easily found a completely different set of things to worry about. It is just My Way.) I had to fight creeping thoughts and worries about eye contact and babbling and gestures; thoughts that Something Was Wrong, Oh My God, What If It’s All Happening Again. My husband would spot Ezra lining up his cars and have to leave the room because it freaked him out.

I don’t think anyone would fault you for deciding against additional children. I also don’t think anyone should get a say in your decision to have another child, if you feel strongly that your family is not yet complete. Perhaps a conversation with a genetic counselor would help pin down your specific risk level —  the sibling risk study does underscore the idea that every family’s individual risk level is different. Perhaps just some time is in order to let you settle in and really think it over — a 3.5 year old and an 11-month old is a lot for anyone, so unless there’s a reason for urgency, maybe table the baby #3 talk for six months to a year. See where your son is then (mainstream school? crazy expensive special needs private school? free services through your district that you are satisfied with?). See what sort of progress he’s made, if the PDD-NOS diagnosis is correct or if he falls somewhere else on — or off — the Spectrum. See where you are, emotionally, financially, etc. And then listen to what your heart/gut is telling you, rather than just what some percentages on a researcher’s spreadsheet say. They might continue to disagree, and at that point you simply make your choice because you believe it’s the right one.

About the author

Amalah

http://www.amalah.com
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 amyadvice@gmail.com.

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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12 Responses to “On Special Needs & Siblings”

  1. JG Jun 24 at 2:43 pm Reply Reply

    Fabulous advice, Amy! That was beautiful, right there.

  2. B Jun 24 at 4:17 pm Reply Reply

    Our youngest has Down syndrome, and though the odds are that a “next” child will be typical, I find the same fears creeping in. Even if the next were to be typical, S/he would live life being brought place to place, therapy to therapy.

    So, my solution is that there won’t be another child until it’s time. I mean, when I am ready to have another child, I’ll think about it then. There won’t be massive planning or strategizing, that I will leave for pregnancy. So far, no urge what-so-ever. But time has a way of changing things and that’s okay too.

    (FWIW, my husband is all in on how I described our decision making.)

  3. Tara Jun 24 at 5:04 pm Reply Reply

    That was exactly what I needed to read right now. I’m in the same position – 3.4 yo boy with PDD-NOS diagnosis (very mild, most likely Asberger’s but too young to tell for sure) and a 10 month old boy, typically developing so far (but man, do I over-analyze every developmental stage). Our older son was diagnosed when the younger was 3 months old. (Talk about a fun mix of diagnosis with post-partum emotions.) We always wanted 3 maybe 4 kids, but recently it has been sort of a question mark. My “against” mainly falls in the feeling guilty about bringing another child into the world knowing the statistics bucket. But Amy, this is great advice, and your “for” list really hit home for me and made me feel less guilt about considering another baby sometime in the future. Because would I trade my oldest for a typical-ish kid who doesn’t come along with therapies, waiting rooms, and medical bills? Not a chance.

  4. ElleB Jun 24 at 6:48 pm Reply Reply

    Just thought that I’d also mention the possibility of adoption–it might be worth  thinking about.

  5. Autumn Jun 25 at 12:16 am Reply Reply

    If my younger brother were a toddler now instead of 25 years ago, I don’t doubt he would have had an asperger’s diagnosis.  I’m a physical therapist, and during my “I want to do pediatrics phase” I worked at a clinic which specialized in autism.  My brother finally made sense to me.  

    And I went out and had my own amazing daughter (22 months).  Who likes things just so and her speech is a bit behind where I would like it to be, but she loves guacamole so life is good (not too worried about sensory issues here)  Knock on wood.  

    I guess what I’m trying to say is what I will paraphrase from my favorite star trek episode.  “it’s life.  And you can miss it if you don’t open your eyes”   LIve.  if thats another baby, great, with our without extra needs.  Live this life

  6. Jennifer Jun 25 at 3:16 pm Reply Reply

    I am pregnant with my first (and ONLY) biological child and I can honestly say that the idea of having a special needs child terrifies me. My husband and I both agree that we want genetic testing done as we get farther along to help prepare us in case something significant is wrong. We’ve had a very frank discussion on what our limits are. While we would not choose to terminate my pregnancy if our child had a weak X chromosome some of the other possible conditions- especially those that usually lead to short life expectancies- would absolutely make us pause and think.

    I understand the joy and yes, burden, that a special needs child would be. My much younger brother has Asperger’s. Not a single facet of my life was unchanged by his birth in both wonderful and not so wonderful ways. I have prepared myself for years for the day when I will take over my brother’s care from my parents. I embrace this responsibility with love, but I could fully understand why others may not feel this way.

    While my brother isn’t the reason why I won’t have more than one child, the thought of coping with my brother and a special needs child is just too much for me. I respect people’s decision to have more children after a special needs- children regardless of their abilities should be celebrated- but I certainly wouldn’t be one of them.

  7. sarah Jun 25 at 5:09 pm Reply Reply

    That is a perfect response to a very difficult question!

    I would like to speak to one of the against reasons. I have an uncle who is mentally retarded. He cannot live on his own, although he can function well and even works as a grocery store overnight stocker. But after my grandparents died, he has been living with my aunt. And if anything happens to her, my husband and I are next in line to take care of him. And I would like to say that although when I was growing up I didn’t really think “ooh,I want to take care of my uncle on top of my own aging parents!” I will say that he has always been my favorite uncle and I would never consider abandoning him, even as a relative a bit more removed than a sibling. We all love him. He’s a great addition to our family and we wouldn’t trade him for someone “normal” even if you offered us each a million dollars. I know not everyone feels the same way and my uncle is pretty high functioning, and the fear of having multiple special needs children is definitely a valid one, but I wouldn’t worry too much about the burdening of others.

  8. Lindsay Jun 26 at 11:01 am Reply Reply

    This response reminds me why I read this column and your blog. So balanced and non-judgey and none of “let me tell you why my experience should be your guide.” Thanks for being a voice of gentleness and reason in the internets wilderness.

  9. Hannah Jun 26 at 3:14 pm Reply Reply

    Just another point of view – I have a younger brother with a serious mental handicap. His “official” diagnosis is something like moderate-to-severe autism with developmental delays. I have always, and continue to struggle with feelings of inadequacy and “second-place-ism” as a result of my brother. I am the typical overachiever sibling, too, but always feel (and again, I emphasize that *I* *feel* this, not that it’s true) that my brother is more important to my parents, and certainly consumes most of their attention and resources. This is a very tough and hurtful place for me, and my parents deny that I feel this way – have actually told me that what I describe does not exist. I also fully accept that I will have to take care of him when my parents die, and that this will likely cause severe disruptions in my own life (I don’t live in the same state).

    I went through significant genetic testing, and IVF/PGD in order to have a daughter who was “normal”, as it turns out my brother’s condition is caused by a genetic disorder called Fragile X. It was difficult and although my daughter is a delight and a reward every day, the whole process still causes me to feel detached from her sometimes.

    I am absolutely not telling you what to do. This is your life, and your children and your decisions. I am just giving you another viewpoint, and encouraging you that if you do have another child, you make sure all of them feel valid, loved and appreciated, and that you do your best to understand the challenges that each one will face, even the so-called “normal” ones.

  10. Blanche Jun 26 at 10:55 pm Reply Reply

    Even neuro-typical children can end up as care-needing adults thanks to injury or illness. My BIL developed medical issues in his early-20’s. They are significant enough that, unless some miracle of science and diagnosis occurs, when his parents are no longer able to manage his care we’re prepared to assume that responsibility, but it’s still not what anyone anticipated for my BIL.

    I’m not sure that really addresses the original question, but perhaps it adds to the data points about care giving already presented?

  11. Suzanne Jul 02 at 11:39 pm Reply Reply

    My oldest son has Aspergers and I have a neurotypical son 2 years younger. I knew myself I could not handle another child with Aspergers, and I didn’t want to risk it. I needed to devote everything I had to the 2 children I had, but that was me. I think you will know if you are at your limit, or if you have room in your life and heart for more. But that is true for any child isn’t it?

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