When you have a young child with special needs, it is only a matter of time before you are asked a very personal question. Are you planning to have another child?
Some would consider this a straightforward question. Others would call it rude. I’m of the opinion that it depends upon who is asking. If it is a close friend, that’s okay. If it is an acquaintance, then it is presumptuous. (And if it is a nosy, judgmental person, then it is outrageous.) It’s not really fair, I suppose, to accept the question from some but not others. Then again, some people have a key to my house – but not others. Most things in life are simply relative.
It seems like a simple question. People ask it all the time of newlyweds — though they shouldn’t. But, when you ask it of a special needs parent, the question is loaded with implications other than the cost of diapers. In our case, the question is echoed by many other questions — all silent, yet screaming.
Don’t you want to try again for a “normal” child? Don’t you want to give your “normal” child a playmate? Are you going to take a chance on having a child with the same condition? Can you afford another child with the same special needs? What if…?
“What if” indeed.
The decision to not have another child is a very personal one, for all parents — but especially for those with special needs kids. And one that doesn’t come with a correct answer. I wouldn’t dream of suggesting that another parent make the same decision. It depends on who you are, and it certainly depends on your circumstances. Regardless of the choice one makes, it is fraught with worry and the judgment of others.
I always wanted at least three children. Being an only child, I envied those with large families. When Sean and I married, I made certain he was on board with this plan. Even during the worst of two hyperemesis pregnancies, I was still determined.
When my second child began to show signs of autism, however, we put off the decision. Between shuffling our NT child to preschool and ferrying our son to therapy, a third child seemed out of reach. Until now, we just left it as a big maybe.
I turned 39 recently. And, although many women choose to have children later these days, the risk of conceiving a child with genetic abnormalities increases with age. And the current statistics are that a woman with one child on the spectrum has a 1 in 10 chance of having another.
But the truth is that our family – on both sides – is filled with so much “otherness” (ADHD, autism, gifted, mental illness, and more) that I believe the odds are significant that we would have another “other” child – perhaps one even more severely affected by…whatever.
If money were not a factor — say, I won the lottery? I probably would. If I could ensure that, no matter what, a third child would be cared for comfortably and with dignity, then…maybe. But even then, I must consider the needs of the two I already have. One who is already greatly impacted by autism and one that will possibly bear the burden of responsibility for him one day. To take a chance that a third child would not be an additional responsibility for her – simply because I want one – is, I think, unfair to Bronwyn. She deserves to live her own life, have her own children — and not care for mine. No,I don’t consider Callum a burden. And, no, his future is not yet written. He’s beloved, and I wouldn’t trade him. But one person’s adult special needs child is eventually another’s burden. That’s reality. For me, I have decided to stop with two.
But that child I’ll never have? She had a name. Already. I knew she would be a girl, and her name was Kerith Grace. I am sad I won’t have her. Another baby asleep on my chest in the wee hours of the night. Another first smile. Two more soft chubby arms wrapped around me. Another set of pattering feet on Christmas morning. More laughter. More love.
Motherhood has been the greatest blessing of my life.
This isn’t a tragedy, I know. It’s merely one of those things in life I will yearn for and not have. But, unlike going on safari or digging up artifacts in an ancient city, this is a dream whose scent I know. And remember. I can still hear the little coos of my nursing babies and feel their tiny little hands against my skin. This yearning is tangible and primal in a way that other unrealized dreams will never be.
So, yes, I will miss this nonexistent child. As I’m sure do countless other mothers and fathers whose choice to not have more children is a a sad one.
But here is what I do have. And it is already so much more than so many others have. I have had the joy of growing two new lives within me. Nurturing and loving them. Every single day of my life, I get to hear my little girl yell “Mommy!” excitedly at the end of the day and have the exquisite pleasure of snuggling with my little ones each morning and night. That’s no consolation prize. It’s a blessing. Two, in fact.
But having had to make this choice, I am now aware of why nosy questions about future children shouldn’t be asked. Of anyone. There are many reasons – not all visible -why someone might be unable or unwilling to bring a child into the world. Some painful, all private.
No, this question is best left unasked. If happy news is on the horizon, you can be assured you’ll be invited to the shower anyway.
Flappiness Is... 
Thank you for your post. It’s like a double-edged sword. I have 1 child but realize that we would stand a good chance of having another child with autism given our family background. I wish I could have given my son a sibling and I worry about who will be there for him when we’re gone.
What a great post. I just found your blog today. My three-year old son is somewhere on the spectrum, although he doesn’t have an official diagnosis other than severe speech and language delay and some social/emotional delay. He’s my only child. I’d love for him to have a sibling to play with but am an older mom and worry that I might be creating a person that he’ll have to care for later. And I’m worried enough about what will happen with him, once we’re gone.
Thanks so much for sharing.
I hate that question too. I know people usually don’t mean any harm by it but you are right that the intention counts.
I have two boys – one of whom has Aspergers – and I would have loved a little girl but I stopped too and for similar reasons. My sons were born via IVF (from the same cycle, but two years apart). We had eight remaining embryos. Although I am in my 40s, the possibility of another child existed but I chose not to take it. I know the feeling of “so close yet so far” in that sense.
My little girl had a name too – Rose. And I know she never really existed but she was a dream I had to relinquish. There was a grieving process involved in that but it doesn’t mean I love my boys any less. It’s hard to explain these things to people unless, like yourself, they have been through it or had similar experiences.
Thank you for posting this.
I love this post! As an adoptive mother, I get the same questions and have a similar yearning. We are just now getting rid of the second twin bed after our decision not to try and adopt again. After a complicated adoption process (that mirrored a Lifetime Movie) and two failed adoption attempts, we can’t do it again. I didn’t intend for my 2e 7 year old boy to be an only, but he is beloved.
🙂 Thank you for sharing that.
When people ask this question it’s to provoke emotion. One that you have expressed beautifully. It’s very rare when a person asks it for a positive reason. If the person doesn’t know you and has no idea about your day to day life, thoughts and yeah that you even have a SN child the question is innocent most likely. As casual as asking about a preference of food or what your plans for the Weekend are.
When someone knows you personally and is aware of your family. Aware of your child’s needs. This question is put out there for many reasons. The want to see the emotion. The want offer their opinion. An opinion offered on a personal choice between a man and woman. I often wonder to we enjoy drinking enother persons pain? Do we bask in it like glory? Do we allow happiness to come in?
When my second child was diagnosed, my husband and I were bombarded with questions. This was the biggest one. When it was asked it was often done with a followed opinion. My boys were quite young back then. A beautiful young family just starting out. Blindsided and learning desperately how to cope. It was as if when they asked they basked in the glory of the response. The emotion of it. While offering negative opinions. The emotions you so kindly expressed for so many. So raw. So perfectly. While they drank in my pain, I fought the depression they now handed me as a gift.
Then it happened I met an Autism parent. She had three kids with special needs. I staired at her. She looked at me raised her chin up. ” yes they have Autism!” she said. Almost daring me, that’s right say something. Be a jackass. Take pleasure in giving me pain. I blinked and smiled. Almost taken aback. ” I have two…. On the spectrum… Um..6 and 7…um all three.” lifting that chin even higher ” yes, all THREE!” I stared cause one seemed more. The were so spaced out in age. She had to know. But she made the choice I so desperately wanted to make. With tears in my eyes I said ” I always wanted a big family. But I keep hearing don’t
have anymore.” she smiled then. ” you have the family you want to have. Not the family someone else tells you to have” And there it was. Many years of pain heaped on me by others lifted for that one moment. With that one statement. It would take years for that statement to really take shape in my life. To really be understood.
Last year I gave birth to my daughter. During my pregnancy it all started right away. As soon as me and my husband announced or expectancy. The judgement, the bad comments. ” Are you ready for another Autism child?” now it was my turn to lift my chin up. My turn to take the stand that I should have taken years ago. Instead of letting someone push me down. Ruin the most amazing time in my beautiful family life. I said ” I love my children for who they are, what ever will be will be. You have the family you want to have.” after having to field this question two more times and going through watching others make drama over my choice. I closed my self off. I was going to bask in the enjoyment of my family. Build it to what I wanted it to be. I was going to have the family me and my husband intend to have. I was not going to make someone add their voice and opinion be more than ne and my husbands. I would not let anyone ruin this moment.
The decision to have or not to have is a very personal decision. I did not write this to provoke hurt or make you or anyone change their decision on kids. I wished that back in the beginning of our Autism journey we would have had the conviction to lift our chin and say. This is a personal decision one that we are not sharing with you. If you are asking this just to give your opinion. Then give it if you must. But choose your words carefully because after you give it, you gave it. I will then have the decision to not welcome you back if it’s an opinion ment to make me feel pain. I wish I did not let others run their agenda in my life back then but I did. Now me and my husband run our agenda and we are truely finally happy. What ever anyone’s decision is make it based on your wants and needs. I make no excuses for the beautiful life I just brought in this world. Autism moms keep your chin up!
WOW! You really spoke to me! I too, chose to have another baby after having a special needs child! (My “S.N” (special needs) child is one of my 5 year old twins – my middle children), so I have 4 children in total now. We left our old church – (and now go to another church, where we are supported and not judged for having another child). Like you, we wanted to have “our family of 4 children, because it was what WE wanted, not because of the opinions of others who said we “shouldn’t” have another child. We were blessed 18 months ago with our beautiful son, who doesn’t have special needs, but even if he had SN we would still have gone ahead. Through my SN child, we have met some amazing friends, some of whom have had another child after an “SN” child; and some friends who have not had more children, and I have learned that we all have our own personal circumstances to consider. For example, I have twins, and some of my “twin mom” friends have decided not to have more, and that is completely understandable! Like you, I have learned to hold my head high and know I make decisions based on our family’s wishes, not on opinions! We enjoy our new church and our son who has severe autism always gets looked after on Sundays at church, to support us and we feel so loved and accepted. It took a long time, but we are happy where we are as a family now in a loving church family with fabulous friends!
I just wrote a blog about this today, before reading yours.
Although I don’t have a child with special needs, I’m feeling that loss at being finished as well.
I’m glad you said all the things you feel a question is loaded with. I would never have intended a question asked to have so many meanings and I would never ever think parents should have a child to give their “normal” child a playmate. Siblings are siblings.
But now, I can at least be more aware of how it may be recieved, by anyone, if ever it comes up.
x
“But one person’s adult special needs child is eventually another’s burden. That’s reality.”
Sentences like these make me want to cry.
I get where you’re coming from. I get that you’re worried about who is going to look out for Callum if he isn’t able to care for himself as an adult without assistance. But he will be no one’s burden. If other people choose to see him that way, it will be on them, not on him.
I was a special needs kid. An undiagnosed one. No early intervention. No occupational therapy. No physical therapy. No speech therapy. No accommodations. No IEPs. No sensory breaks. No sensory diet. No nothing. It was damned hard. And guess what?
I’m now grown up and I’m no one’s burden. Seriously. No one in my life thinks of me as a burden — not my husband, not my kid, not my friends, no one — any more than I think of them as a burden.
There is so much that is wrong with a society that sees caring, helping, and assisting as a burden. Disability isn’t the problem. Lack of social support is the problem.
Saying that a disabled kid is going to grow up to be a burden does not help any of us. It puts on the onus on the child rather than on the society, where it belongs.
I believe, if you will reread my post, that you will see that I was attempting to explain the reality of other people’s perceptions. I stated that my son was not a burden to me. But the unfortunate truth about humanity is that not everyone will love a person like a mother or father would. The fact that you can write this response speaks volumes about your own perspective. I would never consider a self-advocate a burden. But some of our children will never know a single friend, be able to communicate at all, and will self-harm or attack others. That IS tragic. For everyone. There are some degrees of severity with regard to autism that are not conducive to happiness. Respectfully, Flappiness Is.
I feel like we are kindred spirits in more ways than one. I also feel destined to have three children, but for now I’ve got Alex with autism & Hannah without. The questions you posed & the beautiful way you wrote about the gift of your kiddos really touched me. Thank you for sharing all that!
I love your posts! Maybe I’m being rude, (and I really don’t intend to be) but I ask people about their family plans all the time. I don’t offer unsolicited advice or give my opinion, but I’m just curious and interested about their plans for the future. I don’t know why asking about kids is any different than asking about career plans (Are you going to nursing school?), vacation plans (What are you doing this Christmas?), relationship plans (Are you getting married?) So, while I understand that it can be painful and difficult to make this decision, I don’t know why friends shouldn’t ask. I’d prefer to talk about it openly than have them wonder and say nothing.
I think it is because of the variety of reasons a person might not choose to have them. I have a dear friend who was abused as a child. She feels strongly that she did not have the appropriate role model and that her temperament is not suited to children. This was not an easy decision for her. I have another friend who would have liked to have had children, but her husband did not. Another friend lost a child tragically. Then there are those who cannot conceive. Yes, they can adopt, but the subject is still painful. By asking the question, you are possibly reminding them about something that is hurtful. Most of the time, you are probably safe. But I would still say it is best left unasked. You just never know.
We are a young couple (in terms of childbearing in this day in age at least) at 29 years old. We discovered that we were expecting when I was 24 with complete surprise. We discovered that I was pregnant with Ethan in the beginning of January 2008 when I went in to do some tests for pre-op for a bevy of things, including perhaps a partial hysterectomy due to extreme endometriosis. If I felt blessed in January, I had no idea how much more of a blessing I was to get. We knew something was different with our son early on. We finally, by twisting arms, had our son tested and diagnosed. He’s a brilliant little boy, happy and affectionate and intelligent. But he also has autism. We and a bevy of teachers, SLPs and others have worked to get him to where he is. A few times, we had some very minor but noticeable regressions. Every day we (happily) expend enough energy for four kids in how much thought and deliberation we put into everything we do. Life is a huge, interactive learning lesson for him. Everything we do involves him so that he gets the best opportunities in life.
I used to want at least two children. I came from a very close family of three siblings and loving parents. One thing I was certain if not the exact number of children I was going to have is that I never wanted an only child.
It’s a struggle every single day. I see little babies and I want one so bad. I want to hold and love and share the wisdom and compassion and goodness that I’m blessed to have in my life. I want a child who looks like me–unlike my husband and I, our son has blonde hair and blue eyes like distant relatives. I want a daughter to shop with when I’m older, to give me grandchildren to enjoy. Everytime someone asks me “so when are you guys going to have the next one,” I have to turn my head so no one sees my eyes well up. And if I try to explain what they don’t understand–the fear of the unknown when I know what I know, they think it’s their job to reassure me that everything is going to be alright. It seems so far away to them–their “87 others” status is a far cry from our reality. Sure Ethan is a gift and I would change no part of who he is–but I know from what we’ve experienced I could never handle a child who regressed fully, who I could never reach, or even as odd as it sounds, one who is so different from OUR normal.
I still don’t have an answer to this question. My son started out seemingly moderate but now he is extraordinarily brilliant and although he has his challenges, he also has some strengths that even some neurotypical children struggle with like extreme loyalty, an endless well of tolerance and kindness, an inability to lie to harm anyone, and a profound simplicity to his needs and his wants. Would I take the risk again knowing what I know now? I don’t have that answer. Thank you for this post. It tells me I’m not alone with this profound question.
I was touched by this post. I, too, have a NT child (if you can call it NT – he was a preemie and has ADHD, which I have as well) and my 2nd one has autisma nd severe ADHD. Both of them were conceived with fertility assistance. I always knew I would try to have a third child, the question was when. I had to feel emotionally and physically ready, and G-d showed me the way; twice I attempted to start cycling and something got in a way. I’ve learned that this is something your inner spirituality will guide you towards. When you’ll feel ready, you’ll know it. When you wont feel ready, you’ll know it’snot time.
I look forward to reading the rest of your blog. I came here via “sorted megablocks.” It’s always great to network with other parents of autistic kids, esp bc your story seems so similar to mine at the outset.
Very well written. I sometimes think about having another, but seeing as both my children are within the spectrum, chances are against me. Even today, I thought what is it like to have a “normal” child and have the somewhat “normal” parenting experience. I’m afraid I’ll never know. I love my kids, I wouldn’t trade them for the world and I wouldn’t want them to be anything but what they are. I just wouldn’t be able to handle it and again, you’re right about the “burden” issue with siblings. Having a special needs child doesn’t only effect the parents, it’s a lot for the siblings to have to deal with as well. I completely feel you on this.
beautiful post! My son was 4 and already diagnosed on the spetrum when I found out I was pregnant with my second. She turned out to be a beautiful baby girl with her own special needs…PVL, global developmental delay, and at age 3, also diagnosed on the spectrum. one of the things I have learned to appreciate is all the joy my children bring not only to us, but also to all the people who support them and educate them (and there are MANY!) They do require LOTS of energy, and my house is always cluttered, dishes in the sink, laundry never put away…but its okay. at least i am learning to be okay with it. and people’s lack of boundaries always amaze me!
I have always wanted 4 kids. Since I was a kid, I wanted to have two, and adopt two. I wanted two boys and two girls. Plans didn’t go exactly like I expected. I had my son after many fertility treatments. Then when he was not quite a year old, through the help of more treatments, I got pregnant with my boy/girl twins. My older son got his autism diagnosis while my twins were still in the NICU. Now the twins are 18 months old, and are both scheduled for evaluation in December. We strongly suspect both of them will wind up with an autism diagnosis as well. So much for 1 in 88. We are at 3 in 3 here. But I still want that last girl. I want my daughter to have a sister. So we will probably start the adoption process after the first of the year. People think I’m crazy, and they’re probably right. But I’m going to do it anyway.
I have two children, one with autism, one with “something” going on. I had my tubes tied on my second pregnancy because I was already showing signs of postpartum depression and I knew it would get worse. Truth is, I ended up with postpartum psychosis, so I am glad I can’t have more kids. I deal with a lot with my two now and I have also come to be diagnosed with bipolar disorder. I am 36 and had to have a hysterectomy 2 months ago. Folks still ask me if I’m having other children. I just tell them “Nah, I would just end up killing them”. They think it’s funny….but I know the truth. I would because that’s just how that works with postpartum…it gets worse every time.
[…] I just wanted to note this post from my blogging friend.… it’s beautifully written and the undercurrent in everyone’s thoughts as our special needs children get older, even when they don’t say a word is ……”is she done? why? why not?” […]
One of my blogs that I have in mind is something similiar. I have gotten asked that question about more children. The future of your own and what if….
I feel it is rude to assume I am having more. It is rude to ask if I am having more. It is rude to make comments like “he needs a little brother or sister.” People are rude and inconsiderate, don’t assume u know what I go through and don’t assume u know what is best for my child, such as adding more kids into the mix. Thanks for this wonderful blog!
It’s never an easy decision. I wish you peace in your heart and the silence of the questioners.
This was amazing! Beautifully written. This was spot on.
It’s sad that people feel like they have to change their child rearing dreams.
Autism consumes resources. It takes more time and money to have an autistic kid. And a good deal of emotional energy and stuff like that too. I would hope that these are the reasons that would convince some parents that they should not have more kids. I think it would be really sad if people were simply afraid of neurodiversity itself.
When I was in my twenties, I always wanted to have kids so that I could pass on my unique traits to them. I never did have kids, and probably won’t now in my late forties, but I only found out a few years ago that the traits I wanted to pass on to my kids were actually autism.
That’s definitely what it is for us. We want to give him all of the advantages that we can. He is not defective by any means. He’s pure joy in an adorable 3 year old package. But his issues are expensive and, yes, time consuming. And we lucked out with him. He is happy and interactive. I can’t imagine the pain of having a child so severe that every stimulation is torture. That, I confess, does scare me. I wish there were some way to keep the positive qualities and reduce the painful ones with regard to autism. Not so much for our sake, but for his and every child like him. I just want him to be able to access his world.
Aspie Kid, this will sound odd but…actually although my husband and I are NT, we actually can’t imagine raising an NT after our truly amazing spectrum son. Yet we fear the pain that comes with a serious regression (it’s like watching a child die and then facing the shell of that child who you could reach out to just days before and losing that connection…a heart-wrenching and traumatic experience that if I had to face it, there is no doubt I would do it for the all the love I would have for my child but if I could avoid going through that pain, then I certainly would), and we also fear taking away from what we have–a spectrum child who we believe in so much that we invest all that we have into him–all of our love, all of our time, all of our energy because we know our child is worth all of the above and we take that commitment so seriously that we fear having to take any energy away to share with another child, especially one who would deserve the same commitment. So, if it makes you feel better, its not a fear of autism itself, but rather an understanding of the commitment and responsibility of a parent of a spectrumite.
And that was why we now have three. Thank you for your many answers that I read. I want to see me and him. My husband and I. I’ve had many still trying to put their stamp on our family. We hear a lot of whispers. Comments thrown at us to our face and behind our backs. But now we are stronger. What made us even stronger was finding Adults like you. Here on the internet. We meet more now in person too. I have often said “When my kids grow up and have kids…” and then had to watch screwed up faces. The sting and hurt was so there in side me. But then I found my first Autism parent that had Autism as well. Me and my husbands heart soared. We finally new we were right. We were finally able to see past the darkness others wanted us to see. I always wanted children no matter how imperfect I may be. To see my kids show all the strengths of their parents and their weaknesses has been the best blessing on my life. Your parents gave the world a beautiful gift. Even if you don’t have kids you have given the world a beautiful gift. You, your self and the life you have. The gift of an ASPIE!
A brilliant and thought provoking post and one that I can understand completely. Thank you again!
I’ve been asked. We had our son late. I was 39 when he was born. I was not diagnosed with autism until after my son’s diagnosis. How I managed to stumble throughout life with out knowing my differences is still a mystery.
We have autism, schizophrenia, OCD and Tourettes in our family. As much as I love being a mother I do not have the mental energy for a second child. You could drop a handful of lotteries on my head but you couldn’t re-wire my brain for the added wnergy for another probably special needs child.
I do not begrudge my child my energy. I pour it upon him with zest knowing that my good intentions need to be released. It is enough to be a wife and mother to one.
Thank you for this post. Perhaps I can answer with more kindness and less flippancy when I am asked again. By sharing your views, you have validated mine.
Lori
You knew I would love the name. There is nothing like those memories to keep us going. You are a wonderful mother, a complete mother, no matter how many children there are or are not. Love you and your precious family.
Beautifully and thoughtfully stated. Your post today resonates deeply with my own lived experience. A question best unasked by anyone but yourself.
I think you are absolutely right– it’s a very personal question and no one should ask it (besides your doctor or your mother). I can totally relate to the sadness of your decision, too. I made the same one, and for pretty much the same reasons.
I was fortunate in that I was already pregnant with my third child when it became clear that my second had a severe learning disability (with which he has made significant progress since then, thanks be to God.) I would never have gone for a third had I understood what I was up against, and that little girl baby turned out to be my angel and her brother’s savior. She dragged him kicking and screaming into talking and interacting whether he wanted to or not, and they are close enough in age that they progressed and learned together, with her as a role model. I completely understand your decision not to play genetic roulette again; we were simply blessed with the outcome of the gamble that we didn’t know we were taking.