Dealing with ignorance and insensitivity
I’m sorry to hear of your situation and of your wife’s illness. That must be very difficult on you and your family. I hope she is doing better and recovers soon. However I find it difficult to have empathy for your having 3 children with autism. I’m sure you understand once you have one child with autism the risk for the other children having autism greatly increases with each child thereafter. So knowing that information I would have assumed you would have been better prepared for the situation. Not everyone would understand your reason for bringing these children into the world and the burden they place on society. I wish you all the best but wanted to give my opinion (and of others who feel the same way but are hesitant at posting).
why did you continue to have children that will ultimately be a burden to society when you knew you and/or your wife were genetically defective?
The quotes above are among the numerous comments that I have received in either email or comment form recently. Since the my 1st CNN article ran earlier this week, it seems I have been getting these kinds of comments more frequently. I typically let these things roll right of me but that doesn’t address the root problem now, does it. Plus, sometimes these comments really do get offensive and the big ‘ol papa bear in me wants to respond.
What I always find interesting is that these people typically hide behind the name anonymous. I mean if your so confident in your opinion of someone else’s life choices, than why not be confident enough to share your identity, or at least come up with a clever screen name.
I realize that by putting myself and my family out there, I’m welcoming all kids of people with varying opinions into the mix. For the record, I fully support everyone’s right to their opinion, that’s not my problem.
My problem is that people make judgments and or form opinions based on little or flat out incorrect information.
I have seen this type of thing happen to others as well. Someone comes along and decides that they are going to share their unsolicited and unwelcome opinions about a family they come across. In the #Autism community, this typically revolves around families like mine, with multiple children on the #Autism spectrum. People, like the ones quoted above, assume that when child #2 was born, child #1was already diagnosed with #Autism. That’s a very big assumption and you know what they say about people who assume……….
In reality, many times kids aren’t diagnosed until ages 2 or 3. In some cases, like that of the Lost and Tired family, kids aren’t diagnosed until closer to 4 or 5 years of age. Other times, again, as with the Lost and Tired family, we are actually two families blended together.
Why does this matter?
So why does this matter? Well, in all honesty, it shouldn’t, and I truly, truly mean that. Building a family is a deeply personal decision and no one has the right to judge you for doing so. However, for the sake of addressing the above comment’s and possibly heading off anyone from asking the same insensitive questions, I’ll explain.
Let me start by explaining what I mean by a blended family. Actually, I’ll just give you an example. Gavin, is not my biological child. He’s is from my wife’s previous marriage and therefore has a different father. I have raised Gavin as my own since he was a 15 months old. When Lizze and I got married in 2003, and eventually had children together, we became blended. Although, now that I think about it, since I adopted Gavin, I suppose that changes things a bit. Well, anyway, we are at least blended genetically. Make sense?
Typically, when a couple decides to have multiple kids, I think it’s fair to say that many times they aim to have them about 2 years apart. While that may not apply across the board, I think it’s pretty safe to say that in many cases it does.
Having said that, with most kids being diagnosed between the ages of 2-5, how is a parent who has their kids about 2 years apart -whether planned or unplanned- supposed to know that their first child is going to be diagnosed with #Autism? The families that have 3 kids, 2 years apart, could still be in the dark about their 1st child, when they find out number 3 in on the way. It’s important to note that sometimes kids are diagnosed with #Autism even after the age of 5. So as you can see, it’s not that cut and dry, unless of course you have a working crystal ball and can accurately predict the future.
The bottom line
So what’s the bottom line here? Well, for starters, I think it’s pretty clear that no one sets out to have multiple kids on the #Autism spectrum. If there are people out there that do, well, I have not considered their intentions when writing this article. Having said that, even if they did seek to have multiple kids on the spectrum, whether I agree with them or not, it’s their choice. I have never heard of anything like that before but that doesn’t mean it hasn’t happened.
Now, moving on to the more typical scenarios.
Is it true that there is a genetic link to #Autism? Yes, that’s true. Does it mean that if you do happen to know your 1st child is on the #Autism spectrum, you shouldn’t have more kids? While that’s not my decision to make, I’m inclined to say no, and here’s why.
Nothing in life is ever for certain, except that our time on this earth is limited. There are tons of couples that continue to build their family after a diagnosis of #Autism. Sure, some of those families may end up with more kids on the #Autism spectrum, but many others won’t. Are the families with multiple kids on the #Autism spectrum any less of a family than those with only one, or for that matter, none? Of course not, and if you answered yes, then I truly feel sorry for you.
Building a family is one of the most amazing things the human race has accomplished. Is it right for someone to sit in judgement and decide that someone else’s family is somehow wrong, because they are faced with more challenges? Does anyone have the right, ethically, to cast judgement on another because they have made the personal choice to continue building a family after an #Autism diagnosis? The answer is absolutely and unequivocally no.
Even though we may need help along the way, be it governmental or from other more compassionate and understanding human beings, our families shouldn’t be considered a burden on society. In fact, to the contrary, society could stand to learn a few things from families like mine. Things like unconditional love and acceptance comes to mind. Appreciating all the little things in life and never taking anything for granted, is another. How about, never giving up, no matter how alone, overwhelmed, frustrated or lost and tired we feel.
Despite all the many challenges we face as special needs families and any help we may need along the way, our families are just as valid, amazing and beautiful as anyone else’s. Please don’t let anyone, ever convince you otherwise. 🙂
While I fully support your right to form an opinion, that doesn’t make your opinion anymore valid the what’s written on a scrap of paper inside a fortune cookie. If you feel the need to criticize my family or anyone else’s for that matter, solely based on the fact that our beautiful, amazing, wonderful and yes, challenging kids have #Autism, I suggest you peddle your wares else ware, because we’re not buying.
Tammymcgann Thank you. 🙂
let me tell you how selfish i was going to be. when my kid needed a bone marrow transplant to live, nobody including bro was a match, i was already divorced and my first thought was I would have as many children as needed to save my son even though i couldnt stand my ex. good thing we didnt have to do that there was no money or time for those would be children. i would have loved every kid i had. when i have thought if i knew he was going to have cancer and Behcets (autoimmune diesease) and he was going to have such a hard time (still hard time after 10 yrs) would I have had him. if i could have changed him into not having it I would, if i knew how much HE was going to suffer I wouldnt have had him) thank God i wasnt in charge of that because he has been such a blessing, he wants to live (but he said on a couple of real occasions that if his cancer came back he wouldnt treat it which is so scary for me) he has changed me for the better, and he and his brother have already changed the world for the better and i appreciate your blog as a safe place i could say this and hopefully it will help me get better by saying it because I always feel so guilty about everything i did or didnt do or what thoughts i had. i love him so much and it is so hard to watch and i feel bad for his bro because he takes so much responsibility and has been scared that his bro would die on his watch and have watched my sick son pretend to feel better so it wouldnt scare his bro. it is heartbreaking.
Meanwhile, there are teenagers getting knocked up, and once they find out
their kid has special needs . . . off to the adoption agency they go! I wish
ignorant people like those who have criticised you realize how much
RESPONSIBILITY you’ve taken on behalf of your family. You haven’t left one of
your kids at a fire station or church and walked away, relinquishing
responsibility of them. You’ve taken responsibility for
every.single.one.of.them. Even a child that isn’t blood-related. That’s not
just “responsible”; that’s “heroic”.
It’s only normal that we would hold out hope that our next child would be
syndrome-free. But no matter how many precautions we take, there’s no
guarantee. So why should we be condemned for having more children when we’re
doing everything in our power to prevent having another child with special
needs? It’s not fair. IT’S NOT FAIR. And the criticism is devastating. Because
our goal isn’t to fill the world with special-needs children; our goal is to
just have CHILDREN. But no matter what our children may suffer from, parents
like us ARE WILLING TO TAKE RESPONSIBILITY
FOR THEM. Nobody can say the same for the birth parents of the special needs children
who fill adoption agencies across the world.
I don’t even need to read more than 1/4 of your post, nor the comments made by others, to know how hurtful such comments can be. I have a son with Down syndrome, autism, and–currently—an abnormality on Chromosome 4 that has NEVER IN THE HISTORY OF THE WORLD been documented before. And yet, I desperately want a daughter. Desperately. And I’m taking every supplement under the sun to ensure that, if I happen to accidentally become pregnant, my fetus would have the best chance of being both Down syndrome-and-autism-free. But that’s no guarantee. We’re currently not trying for another child, because our son is so unbelievably overwhelming to care for. But considering the lengths we’ve gone to in order to ensure that our future child doesn’t have the same conditions that our son has . . . WE’VE GONE ABOVE AND BEYOND. it would be DEVASTATING for someone to make such an uneducated, callous comment about us. Because we’re not the “Special Needs Duggars”; my husband and I WANT our child(ren) to be productive members of society. But that’s not something we can guarantee. Despite every EDUCATED precaution that I can possibly take, there are no guarantees that our next child won’t also have Down syndrome or autism.
It is generous of you to respond to remarks that are not. To give an open and honest answer does more to clear the air than any other response.
It struck me that we have all these idols — singer, actors, politicians, teachers — that we admire and look up to, but who may be largely irrelevant to the struggles in our own lives. I am trying to compile a list of parent idols whose example can help me through my daily life. You'd be on there, because you behave with such understanding, generosity and grace in such an extremely difficult situation. Thank you for that example.
thanks for an inspired reply to the this issue and to the people who raise it.
Excellent answer, though I'm sure that anyone capable of calling another human being a 'burden to society' isn't worth the time it took you to write this. I was taught from a young age that family is the most important thing and your family, especially the love you give them despite all the difficulties, is just as beautiful as any other. More so, even. Don't let the stupidity drag you down. 🙂
Well I wrote my comment before even reading your response, so I just want to add, well said! I love your response. It was definitely more calm and mature than mine lol.
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Wow, I'm so mad right now I don't even know where to start. I can't even imagine how people can be so ignorant and cruel. First, they don't even know your situation, and if they did, they would feel really stupid because Gavin isn't your biological child and you didn't know Elliott even had autism when you had Emmet and second because they are so utterly lacking in empathy and kindness that I find THEM to be the burden on society. Sickening. I hope these people leave you alone. You deserve to be lifted up and given inspiration, not heartless BULLSHIT like this. These people suck. Know that your frequent readers know the truth, support you and are often in the same boat. I only hope my daughter meets as few of these kinds of people in her life as possible. I mean, wow, to refer to an innocent child as a burden on society. Okay, I'm going to have to stop myself. I'm fuming.
Well said by all 🙂
Very insightful and respectful Rob…thank you.
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You are definitely right! Others have no right to criticize any family, with or without disability. When I come across these people, I'll either ignore them, or tell them straight to their face…"you better pray you and your family won't get these problems like I do. Don't forget, you have your family, and will continue to extend. Only God knows…." I'm not praying for bad things to happen to them, but just to remind them that there's no crystal ball to predict the future. Who are you to criticize other people?