One of the major challenges that families like ours face are the concerns of the sibling(s). With so much time and effort devoted to helping your disabled child, how do you insure that your other children are getting their needs met? Between therapist, doctors, clinicians, play groups, it is easy to neglect your other child(ren), especially if they are the low maintenance type of kid.
Autism is really a family disability. While an individual may have autism, it is impossible for the rest of the family to avoid its ripple effect; like dropping a pebble in the water. Unlike other disabilities, autism is usually accompanied with a fair amount of hope. Cruel as it can be, hope is the catalyst for much of the pressure that families experience. Hope comes in the form of new therapies, diets and "cures". If you child has Downes Syndrome or another disability, you may have an idea what his or her abilities or limitations may be. You can plan for the future when you have an idea what to expect. Not so with autism. For many people autism offers hope; hope that Jenny McCarthy is right. Hope that the intervention strategies you've been practicing for years will suddenly produce unbelievable results. In turn, these hopes and dreams can become all consuming. "Chasing the cure" can divert your attention from important things that cannot be and should not be ignored; your spouse, your job, yourself and your other children.
We have been very fortunate in terms of our children. Taylor is 13 years old and a wonderful, empathic young lady. She is the ultimate big sister, I could not have picked a better a sibling for Danielle. It hasn't always been easy to keep that balance. We realized that, in many ways, we could not be the "typical" family. There were times when we had to acknowledge our unconventional needs and do what was necessary to insure that both Taylor and Danielle's needs were being met. With "typical" families the mantra is, "United We Stand, Divided We Fall". Our family is just the opposite. We often have to split up in order to provide the experiences and meet the needs of both children. There are activities that Taylor throughly enjoys that are completely unbearable for Danielle.
When Danielle was very young, she was adaptable to most any situation. One of Taylor's favorite summer activities is going to California's Great America Theme Park. On many ocassions, we spent the day at the theme park, walking amongst the thousands of other attendees. The sounds of people screaming, roller coasters whirling by, piped in music, people in costume, giant mascots and marching bands are enough to upset anyone, especially a person with autism. However, Danielle was a trouper, these things seemed to have no adverse affects whatsoever on her. Every year, we purchased our "Family Passes" to Great America and to the Monterey Bay Aquarium, Danielle's favorite place to go. Many of the stereotypes that were attributed to children with autism didn't apply in Danielle's case. Kathy and me had several conversations about how fortunate we were that Danielle didn't have the social problems that "other" kids have.
Somewhere around spring of 2005, that all changed. The change was sudden and it caught us completely off guard. I was on my way with Taylor and Danielle to purchase our season/family passes for Great America when I noticed the Danielle seemed to be very uncomfortable. She was wiggling around in her car seat and the expression on her face was somewhere between a frown and a grimace. I asked Taylor to see if she could figure out what was wrong. (Taylor's great at that.) There was nothing physical wrong that we could tell, I thought she might have a stomach ache. I told Danielle to hang on and we'd pull off of the freeway at the next exit. It just so happened, we were at the exit to Great America. What a coincidence, or so I thought. As we got closer to the theme park, Danielle became more and more agitated. Soon, I began to pannick because she was apparently in great pain. When we reached the front gate to the parking lot, Danielle was screaming at the top of her lungs and seemed to be writhing in what I assumed were cramps and pain. I immediately asked for the location of their first aid office and asked that someone call 911. When we reached the front gate, we were met by first aid personnel and they told us the fire department was on their way. As I attempted to take Danielle from the truck, she grabbed on to the car seat and wouldn't let go. This was so unlike Danielle, did she eat or ingest something that I don't know about? The harder I tried to get her from the car and into the hands of the first aid staff, the more she fought me. I looked at the first aid staff and they obviously had no clue what was happening. I began to hear sirens in the distance and so did Danielle. As the sirens got louder, Danielle's screams took on another tone, more of a pleading tone than the painful wails we heard earlier. It soon hit me, it was the park. The sound of roller coasters, the screams of the people, music, the automobile traffic; it was the "energy". Danielle was reacting to the energy being generated from the park and its' patrons. The approaching sirens were not helping the situation at all. I immediately closed the door and jump back in the drivers seat and told the first aid people I couldn't wait, "apologize to the fire department and tell them thanks". I was out of that parking lot as fast as I could safely go. As we moved farther away from the park, Danielle began to calm down. When we were about two miles away, Danielle completely stopped crying and almost immediately, fell asleep.
I don't know who was more traumatized, me or Danielle. Oh, did I forget Taylor? After all, California's Great America is Taylor's favorite summer hang out. We were on our way to purchase family passes and now were driving as fast as we could to get away from the park? All because Danielle had a fit?
Over the following weeks, this same scenario played out at the Monterey Bay Aquarium, the Santa Cruz Beach Board Walk and Gilroy Gardens Theme Park. We understood right away that it was critical that Taylor not be deprived of these experiences and that concessions had to be made. There wouldn't be anymore family passes to our favorite places. From now on, there will only be two passes purchased for each venue; one for Taylor and one for mom. On the occasion when Taylor wants to go for a day the her favorite park, Danielle and dad will find other activities to occupy our time. It has worked out fairly well for us, so far. On our trips to Monterey, we drop Taylor and mom off at the Aquarium and Danielle and dad go down to the beach. It's not the ideal situation but I know that both girls are enjoying themselves and that is what's important. As you might imagine, not recognizing or acknowledging the need for such changes could lead to some real animosity between siblings. So, it's "United We Fall, Divided We Stand."
How do you raise siblings without rivalry? I have no idea, especially in big families. I can, however, tell you what I believe to be absolutely true. I raise my daughters with the expectation that they will love and care for each other. That may sound simple but I don't know that it is all that common a practice. Many people raise their children with the assumption that they will love and care for their sibling and there is a difference.
The assumption that siblings will love each other because they share the same parents is pretty common. It is assumption that I wouldn't make. From the day we knew Kathy was pregnant with Danielle, we told Taylor what an awesome responsibility "she" was undertaking. After all, being a good big sister takes work and we were proud that she was up to the task. The day after Danielle was born, I took Taylor to meet her sister for the first time. Taylor was just weeks away from her third birthday. As Taylor looked at her new baby sister, I told her why we wanted another child. I told Taylor that we thought it was important that she have someone else in her life. Someone who she could grow up with and someone she would always be connected to besides mom and dad. We wanted her to have a friend for life. That was how I introduced Taylor to her new sister.
We have involved Taylor in all aspects of Danielle's life. This was before we knew of Danielle's autism. I believe that this was a crucial ingredient to their relationship. Soon after Danielle's diagnosis was confirmed, I understood how fortunate I was to have laid the foundation for their relationship from day one; the expressed, acknowledged expectation that this is your sibling and that bond is not to be broken. So, Taylor doesn't see this as something she has to do because of Danielle's disability. She understands that this is the way we live, period.
Taylor has benefited so much from Danielle and vise versa. Taylor is a guardian, teacher, mentor and spokesperson for Danielle. Danielle is a friend and apprentice to her big sister. Where one goes, the other is not far behind. Taylor has taken it upon herself to include Danielle in activities with her friends, whenever appropriate. Whether it's swimming, riding scooters, taking walks or playing in the park, Taylor is a trustworthy and attentive big sister. It is a wonderful thing to witness and it makes for some nice afternoon breaks for me and mom as well.
I can't possibly take all of the credit for Taylor's responsible nature. I've talked with others who've tried to include siblings in their activities and it hasn't been nearly as successful. Taylor seemed to have had a certain innate mature "streak". Perhaps some people are born with it, like a character trait. Perhaps we all have it but it just needs to be nurtured.
By the way, a friend asked me about my "energy" theory. It's not a theory, it is fact. My daughter feels energy level of people and locations. The intense energy that some crowds release is to much for Dani to handle and she becomes overwhelmed. For example, we can walk through a large shopping mall with thousands of people, shoulder to shoulder and Danielle has no problem at all. However, come within two miles of an amusement park and she will start to throw a fit. Anyone who knows Danielle will acknowledge that she is not subject to tantrums or fits. It's not about noise and it's not about crowds at all. It is about the energy that people exude. She only displays this type of behavior when she is in or near areas where the excitement level of the crowd is very high.
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