Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

3/14/08

My Autism Everyday: Autism Knocked On The Right Door

“Autism knocked on the wrong door.”
It's the quote heard round the world, from Suzanne Wright, co-founder of Autism Speaks and grandmother to an autistic child. It's been bounced around for a couple of years now, but it's one of those lines that always runs through my mind. It's really irritated me. It's supposed to be a rallying cry, I suppose. For anyone who has seen Autism Everyday, it starts to sound more like an invite to a pity party.

For me, I find it hard to separate autism from the individual. So, when I hear something like autism coming to the wrong door (family), I read this child came to the wrong family. A burden is deeply implied in that statement. I never prayed for a special needs child. During my pregnancy, I didn't dream of doctors' visits, surgeries, medication, or therapies. I don't think an expectant parent ever wishes for that. I remember thinking how easy the second-time around would be. We'd already been through the concerns and struggles first-time parents contend with. We were all done with that, we were seasoned veterans. People complimented my husband and I on our parenting skills, and we were applauded for the amazing "job" we were doing with our daughter. She was polite, outgoing, and intelligent. We received nearly all the credit for that. ;)

My second pregnancy was very different from my first. I was nauseas for the first 5 months, other than that, I actually felt better with my second pregnancy. I felt like I knew what to expect, the hows and whens of all that comes with bringing a new baby home and raising a child. We were so excited and couldn't wait to expand our family.

Our second child was blue and not crying when she was delivered. My heart sank, that is a horrible feeling. You expect joy and celebration in the delivery room. Not silence, with doctors and nurses descending upon your child, and nurses cautiously smiling at you, reassuring you it will be okay. I laid there, watching them assisting my little baby, trying to get her to breathe. My husband and I would nervously glance at one another, and then back to the crowd hovering over our baby. The medical team was successful, and started walking toward me so I could finally hold her. My sigh of relief was interrupted when the doctor paused and had to bring her back to the bassinet, she stopped breathing on her own, again. This time, she quickly responded to their help, I was able to briefly caress her cheek before they whisked her away.

That was my first clue that the second time around may not be a piece of cake. The next day, we found out our daughter had two holes in her heart. She also developed jaundice that required therapy for a week following her birth. Shortly thereafter, the reflux and stomach issues began. The bumpy road continued. It wasn't long before my husband and I realized that this was unlike anything we'd gone through with our first child. All the experience that we'd gained, all the answers we thought we had, now meant very little. I donated my "What To Expect The First Year" book, and realized my daughter was going to write her own book. I had to look within myself to find strength, not a book. We surrounded ourselves with supportive family and friends, and listened to the professionals we had sought out. It wasn't going to be easy--but how does the saying go? Nothing worth it ever is.

I believe that all the challenges I faced growing up, all the experiences I've had to this point, all prepared me for raising my child. I wrote early on, about not particularly liking the praise I receive for "how I am" with my daughter. To me, it's natural. I am her mother, we are her parents, we love her. That's all there is to it. Perhaps some of us have an innate sense of caring for a child with special needs and/or autism? Maybe there are those of us who deep in our hearts realize every child, every person, deserves respect? I suppose it is possible that there are some that are better-suited to raise an autistic child than others. I for one see my daughter as a blessing, she has taught us so much, and has brought great joy to so many. All of our family, friends, and neighbors have delighted in seeing her develop and blossom. They smile each time they see her.

I can say that Autism knocked on the right door. My daughter receives nothing but love, acceptance, understanding, and patience from us. I'm honored that I get to be her mom, and have her in my life. I am also so grateful that my daughter's grandmothers (and grandfathers, for that matter) have never and would never use such a phrase, when referring to her. No, instead they have offered nothing but love, encouragement, and prayers. They have supported us from day one, always willing to listen with an open-ear to our thoughts, and what we felt was best for our child. I know, that regardless of how of my child is doing 10 or 15 years from now, our family will be there for us, and more importantly, for her.

17 comments:

abfh said...

I suspect that not only did Suzanne Wright mean that she sees her grandson as a burden (bad enough in itself), she also meant that elite families such as hers shouldn't have to be bothered with children who don't perfectly match their expectations and that autism should instead be knocking on the doors of families of lower social standing.

Bev said...

Very cool. Thank you for this.

jypsy said...

Absolutely... Autism knocked on the right door when it knocked here. Perhaps that's why it knocked twice...

kristina said...

Ditto marks here-----

dkmnow said...

Around here, Autism needn't bother knocking at all. It just walks right in and makes itself at home.

:-)

Jenn B said...

Well said..I love that statement, "Autism knocked on the right door," that is exactly how I feel. I am so happy to have had this experience. It's not what I expected but I am better off for it. Thanks for sharing!

Marla said...

I agree. I don't like that comment at all.

S.L. said...

abfh:
I agree. It must be just brutal when you can't take your child to Tavern On The Green. Seriously, I have felt the "Neurotypical Entitlement" stems from that elite mindset. It is not all of them, but for sure the Wright's, Singer's, and others involved in Autism Speaks see Autism as something that just doesn't fit in with their Hampton weekends.

Bev: Thanks!

jypsy: I suppose Mrs. Wright would be mortified to hear you have an Autism welcome mat outside your door. ;) Thanks for the comment.

Kristina: Dittos appreciated!

dkmnow: Like I told jypsy, I have a feeling Mrs. W would be apalled that you "allowed" Autism to make itself at home. I love that quote, by the way! Thank you.

jenn b: I second that, I am getting closer to the person I always wanted to be, thanks to autism.

marla: Thank you!

hollywoodjaded said...

Excellent post SL!

Sherman said...

Autism is a broad spectrum. High functioning children are aware of their difference and they can train themselves to eventually become self-sufficient adults. They may "wrestle with demons" but they can be successful adults. On the other end are children who communicate with the outside world only to meet their physical needs. These children remain in arrested emotional development even as their healthly bodies mature into adults. Children on this end of the spectrum will never know adult relationships and will never be able to function without the assistance of a full time adult aide. These children may live at home for years with loving parents but eventually the parents die and leave these autistic children to 20-40 years of institutional living.

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