Tuesday, June 4, 2013

How did you decide on having another kid?

"I have a question—how a mommy with a first kid with special needs decides to have another kid, especially for autistic kids, they say there is a chance for the second kid to be autistic as well," the email read. "I have one boy and I am not sure if I should have another kid or not, I fear that my second will be autistic as my first. Same time, if the second was a typical kid, I will have someone to take care of the first kid and watch over him in case anything happened to me. I am in a debate inside my mind. Is there any advice you or other mommies can help me with?"

Max had a stroke at birth, and while I did have some anxiety about having another child, Dave and I wholeheartedly knew we wanted a second. For us, going to a high-risk practice helped alleviate a lot of worry. It's different when you have a child with autism, as this mom notes, because there is a proven risk. A 2011 study from The University of California, Davis Mind Institute found that parents who have a kid with autism have about a 1 in 5 chance (18.7 percent) of having a second child with autism.

If you look at the flip side, four out of five children who have a sibling with autism will not develop it themselves. And because the study averaged rates of autism among 664 children, the risk may actually may be lower for some families (and higher for others). As the director of environmental research for Autism Speaks told a New York Times reporter, "Family history is a strong risk factor, but there are other risk factors as well. There are strong environmental risk factors. We don't know what those are yet, but this is not the only factor that goes into an autism diagnosis."

How have you dealt with the decision to have another child? Please share, and help give this mom some perspective. 

35 comments:

  1. We conceived our second just after our first had been diagnosed. In our case, our second child is much more severe than our first. While of course I love my second child, I feel that in many ways, our first born was deprived of a lot of energy that could have maybe helped him be even further along than he is. I actually already wrote a blog post about this and in my opinion, it all comes down to Do You Feel Lucky?

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  2. My first and only son has autism, and we had three girls after that, none of whom have autism or any delays, really. We are Catholic and open to life, although we consider the fact that our son has autism when we decide on whether or not we are going to have kids. When I had just Anthony, I reached out to a lot of people about his diagnosis, what to do, what would become of us, etc. My friend Paul talked to his wife about it and her advice was "have more kids". We are busy and crazy but we are happy, my kids are happy, my girls love their brother and I know they'll be great advocates for him. And if they all had special needs, we'd work through that too. There is a certain amount of trust and faith that you have to have to have more kids after having one with special needs, but that's actually true no matter what you do. It's all such a giant crapshoot, isn't it? Best of luck to your reader, it's a hard decision. xx

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  3. My son has an undiagnosed genetic syndrome which could be a sporadic mutation or something my husband and I are both carriers of. After many tests we just don't have any answered. He is delayed and non verbal but started to use the iPad to communicate. He understand but not at the level of a normal 4 year old and had 5 surgeries before turning 4. We always wanted 3-4 kids so knew we wanted more but I was so scared. Finally
    After much thought we decide to go for it, we wanted another child more than the fear we had plus even if it was something we were carriers of the chances of it happening again were below 25%. We saw a high risk OB and had countless ultrasounds. We discussed what we would do it our second has similar issues and well we agreed we had been down that road once already and it would be easier the second time around. We had a healthy little girl about a year ago and it has been amazing. The love between my son and her is so beautiful and even at her young age I see how she is changing his life. He sees her doing things and has started to so things to imitate her. It a hard decision but each family needs to figure out what is right for them and what they could or could not handle

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  4. I am so thankful that my second child was a "surprise." My older child has an undiagnosed genetic syndrome, so we don't know if what she has is de novo (randomly occurring) or inherited. I always wanted lots of children, but was unsure how I would handle two with special needs. My second child is actually advanced for his age and aside from being a wild and crazy handful of a boy, is completely typical. There are times that I feel I could give more to my daughter without an attention-seeking little brother around, but I feel the rewards of a sibling are far greater for her. Can't imagine life without him!

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  5. One can never be absolutely sure, but the most likely cause of Nick's cerebral palsy was a car accident that occurred at 24 weeks with me behind the wheel. Someone back-ended me a at stop light and I got a bad bang from the steering wheel. Anyway, Nick's injury did appear to be random and so we decided to have another child - I guess I felt hopeful and determinedly on the side of life. But then I had a miscarriage. I felt maybe there was truly something wrong with me either physically or existentially (under a poisoned cloud). But then our Natalie was born - she was a handful in her own way, but she's grown into a beautiful, kind, and successful young woman. Like another reader said, it really is a crap shoot. My sister says, "You throw out a few seeds and you never know if you get a carrot or a beet!"

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  6. In our case, we were unable to concieve a second child so we turned to adoption. As fate would have it, our adopted daughter was diagnosed with cerebral palsy, right around the same time that we realized our biological daughter had Aspergers! So I am blessed with two special needs kids. I won't lie- sometimes it's really hard, but I wouldn't go back & change a thing! I love my girls with all my heart, love how having them has challenged me and made me grow, and the bond they have as siblings is amazing!!!
    We are now thinking of opening our hearts to more...

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    1. "Life is like a box of chocolates..." But you'll never experience the deliciousness until you take that first bite!

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  7. I'm really glad this is a topic on group therapy. It seems my feelings on whether to have a 3rd child (first 2 are twins, one with CP) changes from hour to hour. I have 2 boys that are almost 2 and while our life is very hectic and crazy as it is, I still envision having a daughter and I think I would regret it if I didn't at least try. During moments when life is crazy chaotic, like trying to get out the door on time in the morning or those long minutes before your check has arrived at a restaurant and the kids are melting down, I think, "OK, now add a newborn to this mess" and it stresses me right out. My son with CP, doesn't walk independently yet and is at the very beginning stages of using a walker, so we still end up carrying him quite a bit of the time. Because my husband and I sometimes work opposite shifts we're often times flying solo with the kids during the week. It's not that uncommon to have 3 kids under 3 so I'm sure we would find a way and everything would work out, but I also want to make a responsible decision and not take away attention to my boys. I can see that this comment is turning into a "stream of consciousness" type of response, so I'll stop now but I'm taking the timing of this post as a sign to sit down with my husband and re-formulate a game plan.

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  8. Wow, great topic! I think you have to go with your heart on how many children you want and keep the special needs issue separate. Our oldest Miss 17 has down syndrome and right away we wanted a sibling to grow and learn with her. They are 2 years, 9 months apart and fight like any good teenage siblings should. But I wasn't done and wanted another. So we have Miss 17, Mr 15 and then Miss 7. Bit of a gap and keeps me right in the busy part of childrearing but totally worth it.

    If I was to be completely honest (and that's what this is about, right, because I'm probably not alone)... I always wanted a girl and loved my first daughter. But the experience was never typical right from day 1, and some part of me wanted to live the typical daughter experience so when trying for a third, that was part of my motivation. If #3 was a boy I may have even tossed around #4. Now it all seems right.

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    1. Thank you for your honesty! I sometimes feel bad for wanting a daughter I will be able to chat about books with and natter on the phone to. I love my daughter very much, but that will never be possible with her. Maybe there will be a third child some day...

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  9. More from me... anonymous. This is more about family size than special needs. And please know that I'm not criticizing single child over 2, 3, or 4. But... having a sibling or siblings automatically brings life lessons in working with a group, patience, tolerance, flexibility, plus the opportunity to be exposed to way more than one person's interests. Kids with developmental disabilities (generalizing here) usually need direct exposure to things to learn them and being an only child misses this learning entirely. I know a bunch of "typical" only children and their parents have worked hard to ensure their kids learn social skills that can only be gained by tumbling around with a bunch of other kids. But the kids I know who have developmental disabilities, regardless of how the parents try to expose them to different kids, are all (in their own ways) intolerant of change, inflexible, and not good working in a group. Does this make sense?

    To put it in a nutshell - I think kids with special needs have SO much more to gain by having siblings, and as many as you can fit in your house!

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    1. My 2 cents on this:

      http://matir-asurim.blogspot.com/2013/04/two-is-hardest.html

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  10. I am probably going to take a beating for this opinion. But my Boo is our second "surprise". Allie our typical child. Aced all her milestones, etc...but I see how her life is affected with her sister's needs. Yet it is also so enriched in ways we never imagined. Boo has an undiagnosed disorder (probably neurological) but the doctors don't know why or how.

    If Boo were my first born would we take a chance at a second? Probably, sadly, not. At least not at first. Boo takes up so much of our time (with therapies, advocating for school, doctors you name it) and a lot of our financial security.

    We also know that she will be the responsibility of Allie as they get older. And it hurts to know that Allie will have to think of Boo in all of her decisions.

    But here is the caveat. At the end of the day I would not change one thing. The love of Boo and Allie is something I never would have dreamed of.

    I am so glad we have the two girls that let us see beauty in sisters. But I also know that if we had Boo first we would have missed out on the joy.

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  11. I spent the first 5 years of Addison's life holding my breath, in survival mode. And when she turned 5, my heart was open to the third child that I'd never stopped craving. So now I have an 8 year old, a 6 year old, and a 4 month old. It isn't easy because they all need VERY different things, often at the same time, but it is the BEST decision we've ever made. Not only is the baby amazing, we've seen more growth in Addison in the last 4 months than I'd ever have expected, and she's CRAZY in love with him. As if he is hers and hers alone. And being able to do "normal" this time has healed me in ways I didn't even realize I needed!

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  12. Thanks for starting a discussion on this topic. I've been thinking about this a lot lately. I'm a 40 year old mom with a beautiful 3 year old with down syndrome. I had 3 miscarriages before her. While pregnant with her I envisioned at least two kids because I frankly didn't think anyone should be an only child. I love having siblings but now I am just paralyzed with fear. Initially, after she was born and after the dx I thought for sure we needed to have another so someone could look after her and grow with her but now time has passed and I'm just consumed and worried that something even worse could happen. What if I die? Plus add the age factor! The truth is another child like my daughter would be fine but you just never know. Sometimes I feel like I'm struggling as it is although she is the best thing that ever happened to us.
    sara

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  13. My first was born with a heart defect and later had a stroke. Before we got married we decided that our ideal family size would be 4 but we would also take it one kid at a time. For me really the issue was not reluctance to have another but I really feel I rushed into having another kid a little too fast just because I really kind of wanted a do over. Things turned out well and I think his younger brother really pushed him to work harder to recover from his stroke. They are also especially close and I know that if my eldest is not independent that his younger brother will be there to help him out. We did go through genetic counseling right after my eldest was born because we wanted to make sure that there was not a high probability of something happening again.

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  14. I'm struggling with this question right now as well. Our son has a genetic disorder, and since my husband and I are both carriers, there is a 25% chance of future kids having the disorder. At first I never wanted to go through the pain of pregnancy and the heartbreak of diagnosis ever again. But, like you, I want my son to have a sibling but am worried about the burden of caring for him. And I sometimes feel like if we hit the 1 in 70,000 odds for this genetic disorder, we're probably in line to hit the odds for a different but possibly more difficult diagnosis in another kid - so why take the risk?

    Sorry I don't have any answers for you, but I wanted to let you know that you're not alone. Maybe in a couple years I'll have more of an idea. Until then, I will be mulling over this daily.

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  15. LM - have you heard of preimplantation analysis? Might be an option. Unfortunately for us it's not an option for us
    Since we don't have a dx.

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  16. I'm a second autistic kid lol.

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  17. We actually decided not to have a second child. With that said, the decision was NOT primarily based on my son's special needs, although they were a factor. We are older parents to begin with (I had my son while barely hanging onto age 40) and ultimately decided that we feel the most comfortable with having all financial and family resources dedicated to our little boy whose future of independence is unknown. I know that this may not be a popular opinion, and were I younger, I'd definitely be considering it more. Best of luck to whoever sent the email to Ellen - I vote go for it.

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  18. If you want to have a more children out of love and desire for a more children, then go right ahead! However, it is unfair to set a second child up with obligation to care for your first. To do so is to invite all kinds of heartache; please don't put that expectation on a child. If a child decides on their own to care for a sibling and accept guardianship and other responsibilities as an adult, that is a blessing to everyone. But it should never be a motivation for having a child.

    That said, I'm right there with Kristi on voting to have a whole litter of kids...but age was a factor for my husband and me as well. We only had enough time "on the clock" for one more child after our first was born with disabilities, and she has been a blessing. She has "typicalitis" (tougher than disabilities sometimes!), but we weren't concerned about her being born with special needs. After all, we were already learning to handle those...

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    1. I completely agree with this first paragraph.

      We have a 3 year old daughter. She is fantastic. Unfortunately she has a rare genetic condition that occurs in 0.0067% of births (yes you read that number correctly). We never heard of this condition before she was born. She is more typical than not but does have some special needs.

      We would like another child. We are just waiting. It is nice to be able to focus just on her. Time is on our side. We are in our early 30s and there is time to wait for adoption or another biological child.

      Could we have another child (biological or adopted) with special needs? Of course. Anyone could. We accept this baseline risk. We also accept that we have a 1% chance of having another child with this condition. Pre-implantation genetic diagnosis is against our personal values.

      I have enjoyed reading this blog and this is my first post.

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    2. My thoughts exactly! My main concern is that having a typical child after having 1 with special needs, is that for that second child's entire life we'll be 'training' him/her to be a caregiver for a sibling. Maybe I'm wrong but what a life of responsibility to raise someone into! it feels unfair, and if a 2nd is also special needs then what? who takes care of them? just keep em coming until i have a typical one? i guess all in all have another if YOU just want more- DON'T have one to raise them into a lifelong duty against their will, it's not right- it should be a choice and i think if you raise caring children they will naturally care for a sibling, but don't expect it!

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  19. I have a sibling with a learning disability, which we are just now finding may be caused by a malformation of her skull and the compression on her brain. I love my sister very much, but she found it hard when we were kids- she didn't understand why she couldn't keep up with me and her friends in school or socially. We're really close in age, and I think that made it difficult for her.

    I'm really glad that I have both my sisters, but I'm sort of glad that my parents didn't know about her learning disability until we were all born. I've heard a lot of people say that they wanted another kid to "take care of" the differently abled kid, and if I was that younger sibling, I think I'd feel really bad that I was wanted primarily for the kid that was already born, instead of wanting us both equally. No kid deserves to be born under an obligation from birth to be a caregiver for a sibling. I also know that helping my sister succeed medically and academically has taken a financial strain on my parents, and that if they had had only her, that her care would have been easier for them.

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  20. As a teacher this really bothered me

    Same time, if the second was a typical kid, I will have someone to take care of the first kid and watch over him in case anything happened to me. I am in a debate inside my mind. Is there any advice you or other mommies can help me with?"


    I've had a student with a sibling with some sort of disability 5 out of my 11 years teaching. I've noticed that when the parents have a plan in place and send the message that you are your siblings sister/brother it is our job to take care of him. The kids are close. As soon as a kid get the message it is your job to take care of your sibling the rest of your life - that bond is broken.


    A few years ago I had a student who was the only neurotypical person in the house. Mom and Dad were high functioning but off. Older brother had cognitive problems, younger brother was labeled Autistic then later ED.

    In 4th grade my student's stated goal was at 16 to get his GED, and run away to school. Hiding somewhere so someone else would have to take care of his parents and siblings. Reason his parents were telling this 4th grader he had to drop out of school as soon as we can get away with it so he could get a job and take care of them. He was told both bothers were his responsibility the rest of his life.

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  21. I don't want more simply because my two keep my hands full enough! After my first was diagnosed with autism (her sister was 1) I felt the sting of not being able to have more children. Then I thought- if I had this information earlier we may never have had her sister. Thinking of life without both of them in it seems preposterous. Little sis is incandescent and not having her would have been a huge hole. However, having more means accepting the 'risk' of disability. I will say that I no longer see my daughter's autism as a disability. Autistic brains are a gift and simply different- not defective. -Nic

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  22. My 2 year old son has just been diagnosed with autism and I am currently 7 months pregnant with a boy. I am so all over the place right now and to top it all off I am in bits that my unborn son has a higher chance of having it. My head feels like its going to EXPLODE! Does anyone know the what the higher risk is?

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  23. My son is 3 and has a rare neurological disorder that occurs in 1 in 10,000 births. No known cause. He is more typical but he does have his quirks and as of now, I don't know what the future holds for him. I just found out yesterday I am pregnant. I wasn't even sure I wanted another one and was on the pill. I am freaking out right now.

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  24. One of my daughters has spastic monoplegia. She is mostly typical although she has extra needs. I'm not certain I want to have more children now either. I had twins the first time around.

    K I know what you mean and I dont expect my NT child to take care of her sister. She's 2, she's just not cognitively or emotionally ready and its my job in any case. I dont want to spoil her childhood. My partner agrees with me.

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  25. I struggle with this too. My first and only child was diagnosed with Prader-Willi syndrome and has physical and developmental delays. I panic about having another child a) it would take all focus off my daughter and I may miss something that would impede her development b) I would stress about the other child as much as this one and I don't know that I (or my other half) could handle me and c) what if I had another child with special needs? There just would not be the time to put the acare in that we have with our daughter and I would feel guilty.
    However, panic aside, we always wanted more than one child. I think it will have benefits for us as parents and for our daughter. I grew up as one of three and I treasure the relationships I have with my siblings, it's a fantastic relationship. I would hope that any new sibling would care for our special child on some level, as I would if I had a "normal" child. I would never let them devote their life to caring for them I want them to have their own life. But just to know there is someone else on the planet who will have our childs best interests at heart and could oversee them from a distance if anything should happen to us is a nice thought.
    Still reluctant to get pregnant though.....!

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  26. We have three beautiful children. Our oldest daughter who is 6 is typically developed and our middle child a boy who is 5 had level 3 autism. It was a hard decision whether or not we should have another child because of this. We decided that we wanted another child but through adoption because the risk was too high for us to have another child with autism. However our third child a boy who is 2 had something else in mind. When I gave birth to him all I thought everyday was is he going to be okay and we received the news last Tuesday that he is level 3 autistic disorder as well. So I understand how this is a hard decision for everyone. We would not change anything for the world our boys are awesome but they have a long road ahead of them and so do we. It takes a village to raise these kids and the more support you can get the better, that is what we lack and it is hard.

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  27. my oldest (A) has with dcd along with adhd, he also has some asd traits but was never diagnosed for it. I had my other child (J) before we actually knew what was going on with my oldest. My youngest ( J) does not share any of the delays my oldest(A) had.He was right on track even ahead of where he should be developmentally.Then the day before Easter this year he suddenly started having seizures. First a myoclonic, then a tonic clonic. He was taken to the hospital by ambulance, and released later that day,only to wake the next morning with 3 more myoclonic seizures. He is now on keppra and doing well so far. But they are thinking he may have something called Doose syndrome. Granted some days are harder than others when you have two kids with different neurological disorders but even if I had known this would happen, it wouldn't have changed how I felt about having another child. In fact it has been beneficial to the entire family, my oldest with social, speech and even physical development and my youngest has someone who is always looking out for him , and I can relax a little bit more knowing that they have each other <3

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  28. Ok here it is, my wife and I found out were expecting a baby I am 42 she is 40 so were kind of worried about that, here is out issue she has a 18 yr old son with autism and at times is very aggressive, has grabbed our dog around the neck a few times because he was angry we are worried he will do this to a baby, we are Christians and do not believe in abortion I mean that would really eat at us, but we are worried about the safety of this baby, what would you do just looking for advise. My wife has been sick a lot of course that is morning sickness but the stress is wearing on her, I need advise

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    1. Anonymous, I think one good thing to do is consult with experts at her son's school/the guidance counselor and therapists he sees to get advice on what, ultimately, you might be able to do once the baby arrives. You might also see if you can find a behavioral therapist in your area to consult with.

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Thanks for sharing!



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