My interview with Nancy Nally, Scrapbook Update. She’s the mother of a wonderful, autistic girl.
1. Can you introduce yourself and your daughter to my readers?
I’m a work-at-home mom who runs an online media company called Balalaberry Media that I co-own with my husband. Mostly what that means is that I spend a lot of time writing, either for our scrapbook industry trade journal Scrapbook Update or for GigaOM Network’s WebWorkerDaily (where I freelance). Being self-employed and working from home allows me to be flexible for Bridget’s needs.
Bridget is six and a half, and was diagnosed with autism four years ago. She has been attending school full-time in our local school district since age 3 through early intervention programs. Currently she is in their ASD program at our local elementary school. Academically she is extremely high functioning, above grade level, but she has some severe sensory and motor skill issues.
2. What kind of sensory issues does she deal with everyday?
Bridget is very sensitive to sensory stimulation. On the one hand, she needs constant input but on the other hand, she can only handle certain things. She’s extremely sensitive to certain types of noise. Her oral issues are awful – she won’t chew anything that is wet. She has severe textural aversions when it comes to food, as well as being a very picky eater flavor-wise. She’s also sensitive to the feel of fabrics. She lives pretty much completely in soft cotton knits from places like Gymboree because those and a few polyester pajamas are all she can tolerate.
She needs constant input. We discovered pretty quickly when she was an infant that the only way she would fall asleep was in her vibrating bouncy chair in front of a Baby Einstein video. If we put her in her crib in a quiet room, she would literally scream until she puked. Of course, knowing what we know now about her autism and the need she has for constant sensory input, we understand why that was. Now, most nights she falls asleep with a video running in her room.
The funny thing is that with all of her sensitivities, her most favorite place on earth is DisneyWorld – a place designed to completely overload your senses! She loves the 3D movies, getting whipped around on rides, and especially the fireworks.
3. How does her limited communication affect her interaction with other children her age?
Bridget doesn’t interact a lot with other kids. Partially that is due to the communication and partly due to her being used to being by herself. She’s an only child so she’s used to being by herself at home. It takes someone actively engaging her. Mostly she will parallel play with other kids more than play actively with them.
4. Up to this point, what has been the hardest thing for you to deal with when advocating for your daughter?
Dealing with the school district has been very challenging at times for several reasons. It has felt at times like the ASD kids are completely invisible in the building they are in. During her pre-k years, the entrance the kids used was repeatedly locked at drop-off time. When I went to complain, the assistant principal started lecturing me that I wasn’t supposed to be dropping my kid off at that entrance – because he FORGOT that there was an entire program of kids that are supposed to use that entrance every day! When I had difficulty reloading my daughter’s cafeteria account, I called the cafeteria for help and was told I was being denied access to the system because the cafeteria didn’t feed the pre-k kids. Actually, they fed them twice a day!
The building is brand new, built in the past couple years, and when my daughter moved up into the regular school population I discovered that when it was designed there was no handicapped drop-off area designed into it. The kids in the physically handicapped and autism programs have to be handed directly over to staff members instead of just going to/from classes themselves like the rest of the kids. The building wasn’t designed with any area to accommodate the handicapped buses offloading wheelchairs or parents having to meet staff members to hand over their kids directly. Those areas had to be jury-rigged after the construction. It wasn’t until this school year that the principal finally came up with a solution for the handicapped car rider area that makes me finally feel like I’m not taking my life in my hands every time I drop off or pick up my daughter.
The administration also doesn’t understand the challenges of dealing with a non-verbal (or essentially non-verbal) child in a school. They don’t understand that extra effort needs to be made in communicating with the parents of those children and in making the parents of those children feel secure in the environment their child is placed in since their child can’t communicate if something is wrong. Last school year, our daughter’s teacher took medical leave and then retired mid-year. She was gone from the classroom for two weeks before I found out about it when I showed up for an IEP meeting and she wasn’t there. The aides who brought my daughter out to the car every day said they had been given the distinct impression they weren’t supposed to share that there was sub in the classroom. When I confronted the sub who took over the classroom about why he didn’t announce his presence in the room to parents, he said it wasn’t his place to tell people the teacher might not be coming back. I had to explain to him and to the administration that you don’t have to tell us the medical leave might be permanent, but as parents we need to know who is in our child’s classroom on a daily basis – especially when our children are incapable of telling us that themselves. Several other incidents have occurred where the administration has erred on the side of keeping things to themselves rather than sharing information with parents, or of disregarding parent concerns, not understanding that it is imperative for parents of non-verbal kids to really trust their child’s classroom arrangement.
Several years ago the district made a move to implement uniforms in schools. I fought it tooth and nail along with a group of other parents. One of my concerns was that many of the autistic kids, like mine, couldn’t tolerate the fabrics they would be required to wear. The board’s response to that issue being raised was that they would exempt special needs kids via their IEP’s if necessary. They didn’t seem to understand or care that those kids running around the school in regular clothes with everyone else in uniforms would be the equivalent of putting a neon sign that says “I’m handicapped! I’m different!” on those kids. The ASD kids have a hard enough time fitting in during inclusion programs without their clothes giving away who they are from 100 yards! But the school board was on a mission and our kids were in their way. They were prepared to make them collateral damage to get what they wanted. We eventually defeated the uniform agenda but the most disappointing thing about that entire fight was that the district’s ESE department, whose job it is to supposedly advocate for the special needs kids, rolled over and played dead and signed off on the uniform plan.
Are you getting that I could go on and on about dealing with the school district?
5. What is the greatest moment to date that you have had with your child?
My greatest moment with Bridget has nothing to do with her autism. It has to do with the fact that she is here at all. My first child was stillborn due to an auto-immune condition that I have that was undiagnosed at the time. I nearly died giving birth to him. My pregnancy with Bridget was very high risk and very high intervention. She was born on the Friday of Mother’s Day weekend in 2003. Moments after she was born, she developed breathing issues and suddenly a NICU team was in my room whisking her away. We were terrified. She was diagnosed with a pneumothorax (air in the chest cavity, probably from the vaginal delivery pushing on her chest) and spent her first two nights in the NICU. The doctor, who had also delivered our son, was quick to get the pediatrician down to my room to reassure us she was alright and they got me into a wheelchair to the NICU very quickly. But the best moment…was on Sunday, Mother’s Day, when they released her from the NICU and brought her to my room and she was placed in my arms and we knew she was really going to be alright. That was the best Mother’s Day gift I could have ever gotten and I don’t think anything could top that.
Interestingly, even that problem could be linked to Bridget’s autism possibly. Bridget’s head was unusually large for her birth weight – a characteristic that is beginning to look common in autistic children. The pneumothorax was likely caused by the extreme pushing that I had to do to get her oversized head out. Bridget was less than 6lbs at birth but earlier that week based on her head and leg measurements on ultrasound she had been estimated at 7.5lbs. Her large head threw off the calculation.
6. Is there one thing that you would love for people not familiar with raising an autistic child to know?
I think a lot of people unfamiliar with dealing with autism think that these kids are mentally or emotionally handicapped when that isn’t the case (or isn’t their primary problem at least). I think there needs to be more understanding of the sensory disturbances that autistic people experience, and how a lot of the seemingly problematic behavior in other areas flows from the irritated or malfunctioning senses. They need to understand that my child isn’t dumb, it’s just that her auditory processing is slow and so she can’t understand the question you are asking her.