Wednesday, February 24, 2010

Birthday parties and Autism

We had Olivia's birthday party on Sunday. We go all out for her birthday party for many reasons.

1-We think our kids' birthday party should be THEIR day where they get to be the center of attention and have things their way.

2-We love our kids a whole bunch and their birthday is the celebration of their birth. I know I'm stating the obvious for most of you but you wouldn't believe how many people don't get the connection. Sad.

3-We don't let our daughter play with just anyone. That means she has very few "play dates". I know we are the meanest parents ever but we are not willing to take a chance on something traumatic happening to her by playing with the "wrong" kids.

4-Stephen has really enjoyed her parties and being "one of the kids" and he doesn't really have friends. We have tried inviting kids from his class (which is very small every year) in the past and one kid showed up one year. Plus, we don't want to just invite kids to have bodies at his party. We want to invite kids that Stephen has a connection with and he doesn't have many. We have a party for him every year but it's just friends and family and it's just not the same experience he has at a "real" birthday party.
How is my son, who is severely affected by Autism, able to participate in his little sister's birthday party?
Well, we didn't tell any of the kids he has Autism. Not because we are ashamed or it's some big secret but because we wanted to give Stephen the opportunity to be himself and figured if any of the kids had an issue with his behavior we would do some explaining. Another factor that helps him participate in the party is that Stephen limits his hand flapping, echolalia and other "odd" behavior himself when he is around NTs. We have never stopped his "odd" behaviors or stimming or made him feel ashamed of it and over time he has noticed how other people act in social settings or in public and realizes that it isn't considered "acceptable" so he reserves "really expressing himself' for his classroom and at home. He is able to blend on his own. We feel that if we make some announcement or tell the other kids he has Autism right off the bat they will be looking for him to do something "weird" or automatically not like him because he has been labeled as "different" in their minds. I only heard one child say to Olivia, "Is that your brother?" and that was it. No teasing, no rude remarks or leaving him out.
Another reason Stephen does so well at her parties is that his little sister loves him and accepts him and wouldn't even think of not having him at her party. We have always talked to Olivia about accepting and being sympathetic towards ANYBODY with something that makes them different. We have taught her that everyone is here for a reason and deserves respect and empathy. We have always praised her for being such a loving sister to her brother.

Notice that Stephen, who LOVES candy is the only kid not crawling around on the floor grabbing it up like they'll never have any again!

He didn't like the blind fold but did write his name on the paper "tail" and stuck it on the poster when it was his turn.
I hope that all of the positive, inclusive, experiences Stephen is having now at his sister's parties is preparing him for his birthday parties with his own friends or parties that he will be invited to someday.
How do your kids handle birthday parties, their own, siblings, other kids', etc. ?

Temple Grandin: The world needs all kinds of minds | Video on

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Temple Grandin: The world needs all kinds of minds Video on

Tuesday, February 9, 2010

What to expect when you're expecting-the unexpected

It's a good thing I've never been the type of person to daydream or fantasize about how I want things to be. Most pregnant women picture a joyous birth surrounded by friends and family. As with my son, Stephen, who was diagnosed with Autism at the very young age of 18 months; my daughter was going to teach me what a blessing it is to expect the unexpected. Expectations of having the "perfect child" puts limitations on happiness for the child AND the parent.

Eight years ago today my daughter, Olivia was born. Within two hours of her birth I was alone and watching her turn blue while I breast fed her for the first time. Pat had to go home almost immediately after her birth to care for Stephen. I pressed the emergency button and a couple of nurses came into my room. I told them that she was turning blue while I breast fed her and they suctioned her lungs and told me that they needed to take her to the nursery to keep an eye on her. They called the pediatrician on call and they suggested just observing her for a couple hours and to call them back.

I told them no. She needed to see a doctor, NOW. The doctor came down from the NICU and came to the same conclusion that she could be observed in the nursery. I told her that I thought there was something seriously wrong with my daughter and that she needed to be in the NICU. She said something condescending about me being a hysterical first time mom, which I was not. I immediately told her that because my labor progressed so quickly I had only had one bag of antibiotics before Olivia was born. I had tested positive for the strep swab and they administer 2 bags of antibiotic minimum during labor before the baby is born to prevent infection during birth. That was all I needed to say to get an immediate transfer for Olivia to the NICU.

I had not shed a single tear while fighting for my daughter's life. I did what I always do in the throws of any crisis. I took care of business and then cried hysterically when I knew I didn't need to be clear headed and strong anymore. On my way back to the room I started crying. I called Pat and told him what had happened and cried some more.

They say that you see people's true colors when the chips are down and this was one of my proudest moments. I was alone, no family was there to welcome my little girl into the world, no husband to back me up. I stood alone against a doctor on the phone and a room full of medical staff and won. It's a good thing I fought so hard to get Olivia into the NICU because once they took x-rays of her lungs they found she had pneumonia. When she constantly spit up everything she ate they did a test to measure the acid and how far it was coming up her throat and found she had GERD.

She probably would have died if I had taken her home or maybe in the hospital. But she didn't. She spent 10 days in the NICU. It brought me to tears to go home without her when I was discharged. I went home and faithfully pumped my breast milk,with a manual pump by hand, every 2-3 hours. Yes, I set an alarm to wake me up all night and all day for 10 days. I needed to do SOMETHING to help her get better and that was all I could do. We could only visit her for about an hour every day while Stephen was in preschool. The hospital was a half hour away. It seemed like 300 miles away every time we got back home and couldn't see her until the next day. We called at least once a day, we didn't want to seem annoying, to see how she was doing.

When she did come home she was having projectile diarrhea. For reals. I would put a diaper under her and the poop would shoot straight out of her. I went through 3-4 diapers everytime I changed her. They took her off one of her meds and the diarrhea stopped. I was able to breast feed her without any problems. Eventually, the two huge scabs on each butt cheek where she had developed a monster diaper rash in the hospital healed. Even with her being so sick and needing so much care and the endless breastfeeding I was so happy that she was alive and home.

She has been on medicine since birth to control the acid in her stomach. Even with meds for her GERD she has had dental problems and bouts of heartburn. She was diagnosed with Asthma a couple years ago and most recently with ADHD. We spent all of 2009 going to specialists to find out what was wrong with her skin. We were told it was Segmental Neurofibromatosis and now that has been tossed out and they think she has some harmless pigmentation issues. Much of her life has been spent taking meds and getting sick a lot and seeing many doctors.

Yet, she carries on day after day. She is so full of excitement. Does she remember how close she came to dying as a newborn? Sometimes I think, yes, she is living like people do when they are dying. I think she knows deep down inside that each day is a gift and not to be taken for granted. Every day is a day to rejoice in the unexpected because it's all we are given. All we have is RIGHT NOW. We can't wait until things are "perfect" or live up to our expectations to feel happy.
I wish more parents could give their children unconditional love. Our children are who they are for a reason. We all serve a purpose and have something to offer this world as our unique selves. I wish the mother who overdosed her 8 year-old son with Autism could have accepted him and loved him unconditionally. Instead, her quest for a "normal" child drove her to take his life and try to take her own when she had to face the reality that he was going to be who he was no matter how much money she had and how many doctors she dragged him to.

Eight years ago today, I never expected I would give birth to a very sick little girl. I never expected she would continue to be a "sickly" child. I DID expect to love her the minute she was born and I held her in my arms. I DID expect to do everything I could to protect, care for and nurture her. She has become a caring, generous, creative, dramatic, energetic and independant girl. I never could have expected such an amazing child, my imagination just isn't that good!

Happy Birthday Olivia!