Since I went public with my pregnancy with Andrew, I have been surprised - to say the least - at the comments I have heard in response. I think - I hope - that the overwhelming intent is to be compassionate and supportive, yet the comments received don't always have that underlying meaning. This is one of several posts in which I plan to address some of the more common responses I have received to being an expecting special needs mom.
People can be nosy.
Brian and I dated about 7 years before we got married. In that time, I heard one question quite frequently...
When are you getting married?
Well, we did get married in our own time; we were babies in our mid-20s, so we weren't looking to rush into marriage! Then the next question came...
When are you going to start a family?
It wasn't 7 years this time, but after 3 years we had Jack. And it was around the time of Jack's 1st birthday that we got yet another question...
So, when are you going to give Jack a baby brother or sister?
Realistically, we weren't ready for more children at that time. We didn't have a name for Jack's challenges quite yet, and we were still being convinced by doctors that it was something he'd outgrow with time. After a year of dealing with Jack's frequent vomiting, we were tired. We wanted to wait until Jack got a little older before adding to our family.
Then came Jack's 2nd birthday and his autism diagnosis. And suddenly, the questions just...vanished. No longer did people wonder when we would add to our family. At that point, it was almost just assumed - by most people - that we would not.
Here's the thing; we're human. We always imagined having 2 children and we wanted Jack to have a sibling. Jack's special needs seemed to be a silly reason to deny him that and our family its completion.
Yet, when people see us as an autism family with a child diagnosed with multiple special needs, I think people see one thing only - bad genes. I'm not denying that; certainly Jack did get a not-so-great roll of the genetic dice. He's not autistic or hypotonic or anything else for any other reason other than it was what was written in his genetic code. I have to imagine that some of that - but possibly not all - is inherited from Brian and I.
Thus, I think our decision to have another child produces one of two reactions from other people:
Why in God's name would you have more kids if others might be at risk of having the same challenges as Jack?
You are so incredibly brave for having another child knowing that child could also be disabled!
Honestly, I find both responses annoying. Here's why...
For the former, why should having one special needs child mean that I should permanently close up the reproductive shop? Some people quote the commitment (Could you care for two like Jack?!?), or finances (Could you afford it?), or even the burden on social services (You're having another child that MY taxpayer dollars might have to support through special education funding and Medicaid coverage!).
It's these people who really bother me the most. People ask similar questions of families having multiples, too. I imagine that our answers are similar...we just do it.
That's right. When people ask me how I manage to raise a child with special needs, I respond that I just do...and that they could as well. There is nothing special about me. I'm not SuperMom. I have good days and bad days. I have days when I phone it in as a Mom and others when I'm a rock star.
Ditto for finances. I feel like that falls into the category of "it's none of anyone's business". Would that be a question if I was having my second NT child? Of course not. It would be wildly inappropriate for someone to ask that. (And for the record, we provide for our family.)
As for the social services burden, this is such a complex concept. Would Jack (or a second special needs child) need a Medicaid waiver if our private health insurance covered autism treatments? I'm finding that people are opposed to insurance mandates in our area, too. Conversely, having a NT child doesn't preclude them from ever needing social services, either. After all, a child might become disabled one day - though an accident, etc. - or an adult child could be unemployed or underemployed. Nothing is certain when you have children. If we wanted to truly decrease the public burden, wouldn't it be prudent if everyone stopped having children?
See the problem with that kind of thinking? It's easy to single out the disabled - and potentially disabled - as being a burden when the reality is that any of us could present a similar burden one day.
And then there is the idea of my supposed bravery. Let me dispel any rumors here and now; I'm not a brave person. I'm not a hero. I'm not a martyr or a person to place on a pillar as an example of strength. I'm just a mom.
Do you hear me, world? I'm only a mom. I'm a mom who really wanted her child to have a sibling. I'm a mom who really wanted two children. I'm a mom who wanted to expand my family.
And I'm a mom that feels like my son's special needs should not somehow preclude us from doing the things that families do, in our own way. Some families choose to expand. Our family is just like everyone else's, only a little different.
I also feel like placing a mantle of bravery upon me seems to imply that having a disabled child makes me some kind of saint, as though my child presents as some kind of unique burden that I am so courageous to take on. He's not; he's my child. Raising him is challenging, but he is my child. Raising him makes me no more worthy of praise or reverence than would raising a NT child. It is what we PARENTS do that is extraordinary in and of itself, not the challenges our children might present. I brought him into this world, and being his mom doesn't make me a hero. Being his mom is solely a result of the boundless love I have for him.
The same would go for Andrew, regardless of his neurology. I care for my kids, regardless of their individual needs. That doesn't make me brave. It makes me a mom.
It took several years for me to get to this point where I am finally expecting a baby, preparing for delivery, and providing Jack the sibling he so deserves. What I wish is that humanity could understand that this decision was carefully considered, as the decision to have an additional child always should be.
What I also wish that people could see is that baby Andrew - like all babies born in our world - is a blessing. NT or disabled, he will bring joy to our lives. His worth shouldn't be measured in his potential. His worth should simply be measured in his existence, the love we feel, and the joy he brings...and all human beings bring joy to someone.
To the people who might wonder then what to say to an expecting special needs mom, try these:
How are you feeling?
You must be so excited!
Or you could always try the old standby...
I'm so happy for you.
Let's try that, shall we? Let's just be happy for one another.