Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 4-year old little boy on the autism spectrum. After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.
Saturday, July 20, 2013
Just One More
Once you get married, it seems like people almost immediately begin to ask, "When are you going to have kids?" It seems like a given; a boy and a girl fall in love, they get married, and they have the typical 2.3 kids, picket fence, and the lovable dog.
I know that after Jack was born - and before we knew that his challenges were more than just temporary detours in our lives - we had people asking when we would have another. I put the questions off; in reality, we planned to space them out by about 2 years, but we always knew we wanted just one more baby. We felt that our son deserved a sibling.
Suddenly, when Jack was diagnosed with autism and a million other things at the age of 2, those questions stopped coming. It was as though people automatically assumed that we would be done having children since we had one with special needs.
The thing is...we weren't done. Knowing our son was autistic, we wanted him to have a sibling more than ever. We wanted him to have a playmate, a confidante, and a friend. We just didn't want him to be alone.
After a year and a half of trying and not getting pregnant, then "giving up" temporarily, then trying again, we finally had our miracle baby. Then, at 14 weeks, we lost our baby in the 2nd trimester.
Suddenly, I encountered the taboo once more. Of course, when you lose a baby during pregnancy, the assumption is that there was something "wrong" with the baby. So, the comments I started receiving ran the gamut of insensitivity. Many people said, "It was probably for the best." Others still went as far as to challenge my ability to handle more children - saying, "You probably couldn't have managed 2 disabled children anyways."
As I look back on it, those comments - and the lack thereof after Jack's diagnosis - highlight a common taboo that we place among special needs families. I think that the popular opinion is that once you have a child with special needs, suddenly you need to reconsider any plans for expanding your family. Certainly, it is assumed that you wouldn't be planning - much less trying - to have another. After all, your hands are too full. You have a lot to deal with and a child who costs a lot to raise. How would you bear the financial and emotional burden of another child, particularly another child who might have special needs?
To the people out there who wonder what the hell us special needs parents who go on to want to have more kids might be thinking, I want to share some insights. First, I know many parents of typical children who aren't financially ready to add to their family. Really, who is? No one is fully prepared for just what a child costs and how it will change your family dynamic. Just because my child's medical needs are what is a financial priority versus extracurriculars and camps does not mean that my family is any less (or more) prepared for more children than the average family.
Second, I don't know why people assume that us special needs parents will crack under the pressure of having (potentially) 2 special needs children. Is it what any of us want? Absolutely not, but that's because we don't want our kids to struggle; we want life to be easy for them. As for me, having another autistic child would not be the end of the world. In fact, I know more of what I'm looking for this time around as opposed to the unknowing neophyte mom I once was. I know how to start Early Intervention and put together an IEP. I know how to apply for Medicaid waivers and have successfully done so. We already have a developmental pediatrician.
So you see, I've already done most of the leg-work for number 2.
Third, I think people assume that just because my first child is autistic that all of my subsequent children will be as well. Maybe, but maybe not. Sure, statistically the odds are higher that any subsequent children I have will be on the spectrum, but the odds are greater that they won't. I choose hope rather than pessimism. And if that child is autistic? Well...see the point I made above.
Instead at looking all of the reasons to give up, I look at the reasons to keep trying. My son deserves a sibling. He is a fantastic kid and would make a wonderful big brother. A sibling would also be a constant social challenge to him, which would surely aid in his social development as so many friends with kids on the spectrum tell me.
And what about just wanting a 2nd child? Can't we be like any other family and simply wish to welcome another into our hearts? All children are a blessing, and no child contributes any less than the others to the happiness of a family - special needs or not. I would never presume to tell someone else what is best for their family, so I don't understand why having a special needs child opens my family up to criticism regarding our choices.
Even though we have one special needs child and even though we lost another, we still want that living sibling for our son. I don't think that is so wrong of us. And sure, would be be scared? Absolutely, but aren't all parents scared about what the birth of a new child might mean for their families and their lives?
And so we keep trying. And wishing. And hoping. Just like every other family.