Thursday, May 30, 2019

Autism Changes our Path and Directs how We Can Help the Future

Tuesday I received an email inviting me to my oldest child's school. So often I forget to embrace the "typical" moments with my kids but since autism, I don't let one moment go by. Perhaps that is a gift from autism. I arrived at school not sure what to expect, as my daughter had only casually mentioned she was entering a contest. A contest. Knowing our family and our luck I wasn't so sure how the contest would go but I didn't have to work so no matter what the results, I'd be there.

The National Kitchen and Bath Association awarded our school a grant to help facilitate a contest that would grow their students through STEM work in their interdisciplinary studies as well as gifted and talented programs. This isn't my thing. I'm not STEM or STEAM and I certainly wasn't gifted or talented so I always enter these experiences not sure what exactly will follow. I was utterly shocked with the innovation that the children explored through their classes and it made someone like me excited to see science in motion and the opportunities of the future. 

I giggled with a favorite teacher of Simone's who suggested I visit her project. She and I have become close, first through my daughter, then through her daughter who visited me weekly while I watched her each week. There, in the center of the room, she stood. Her poster wasn't exceptional and as I squinted I could see very little of what she had to share but as I walked closer, she began to explain.

My daughter created a refrigerator that would have facial recognition to not only benefit those of us who have a few pounds to lose protecting us from ourselves but also providing protection for someone like her little sister who has been known to gorge herself on foods that were not safe for her. She does this at all hours of the day and night and after a few years all of us are exhausted, pulling her out of cabinets, down from shelves and out of the chill of the fridge and freezer. For us, her allergy is physical. She gets sick. She then becomes what we have graciously noted to be "babyzilla" BUT for other their reaction is not so mild. For other children, their parents lament the loss of their own offspring because they could not protect them from themselves. 

Perhaps our world is not yet ready for her design, perhaps some adult twice or three times her age is already working on this design but today, I learned that once again, autism is calling my family to grow, to reach, to climb those mountains that seemed to shadow our world and create darkness in the early years of my youngest child's life.

Today, I watched as my daughter beamed, with pride as she was selected as a winner of this contest that I had no idea about. Today, I learned my daughter worked for two months on this project, working on programming, researching technology and discovering a price point that she felt her product could be sold at to make it affordable (ish) for families. Today, I saw how autism, though its taken us into uncharted territory has the potential to push us to find who we were intended to be.

A huge shout out and thank you to the National Kitchen and Bath Association for giving my child an opportunity to shine. Each child, no matter what their gift has a talent and today I realized that my daughter's talent may be empathy and understanding that we are not only called to live our life but to make lives of others better. I am grateful that I had the opportunity to watch my daughter to celebrate her success and to imagine who she may become, all because autism changed our path.

Saturday, May 11, 2019

She's More Than Money to Me

This week has shown me a lot about people, about beliefs and about the reason people choose the path of what they hope to do with their lives, it also shows me how our system is broken, how money drives too many and how as a parent with this challenge standing, staring me straight in the face I realize how important it is to keep fighting even when I couldn't sleep because I was sick, all night long.

On Monday, I got a call from our BCBA, It was one that I didn't understand the impact of until later this week. When our BCBA is in our home, I listen as laughter fills the house while she works with Seraphina. I smile as Serrie plays chase manding for attention and the want for attention, something we didn't know if we would ever see is precious. I knew it was only time and I was waiting to see the incredible growth and guidance that this woman was going to give to my daughter and my family. We have started to see change in just five short months and I was certain in two or three years, that my child may in fact be a completely different child than the child she is today. Then, that call. The one that said this June she would be leaving, taking a promotion to move to Texas. While tears welled up and flowed from my eyes, I thought of the number of children she could help and as a clinical director what could she do for others that she has already started for us? Then it sunk in. I would need to find someone new, someone to accept our family. Someone to accept her. That wasn't going to be as easy.

I worked quickly giving call to a BCBA that had a relationship with our sweet Serrie. Dead end. Endless calls. Would someone take us? Oversee her? Choose to help her?

So far, the answer no.



For those who have followed this journey, insurance has been a struggle, from day one. Denials. Limitations. Lack of coverage. It was all in my repertoire. I spent hours, researching, calling, crying, and hoping something would change. I traveled all over New Jersey asking Senators, Congressmen and Representatives to listen to the fact my child and others like her were not getting the care they deserved even though they lived in New Jersey where children, like my own are supposed to be safe, protected and helped. In January that changed. Finally we had coverage. Here we are.

Recently I was denied by PerformCare once again. Instead of fighting a fifth time, I let it go because I didn't want to be greedy. I didn't want to take money from another child, services from someone else who didn't have any services available to them.

Now this.

I am back at square one. And its pretty obvious that there are two types of people. There are those that have chosen this path to help children, children with extra needs, children with autism, children that need them and there are others who have chosen this path strictly for money. Last night our last hope insisted that the least she would accept is $85.00, an hour. Our insurance pays $48.00. That last hope denied my child based on money. I wonder exactly who these people think they are choosing money over helping a child?

I am shocked.

I am saddened.

I know many teachers, they choose the profession to help children. Certainly, they need a living wage but they would never say "no" because nearly $50.00 an hour wasn't enough.

Last night, I was up. Physically ill. Vomiting out the pain that I feel fearing I cannot give my child what she needs, fearing that she won't get what she deserves because I haven't been able to provide it and I wonder, is she not more than money to others? Its apparent she was to our first BCBA, now if only I could find someone that would accept that pay once again.

Choose To Act

Yesterday my daughter had surgery. It wasn't major but she was fully sedated. Today as I carried her out of mass kicking me and pulling ...