Saturday, March 1, 2014

The Light At the End of the Tunnel

Ever since my son's diagnosis of Autism in 2004, my life, and lives of my family, have been like a never ending roller coaster ride, and I have never really liked roller coasters. Going from doctor to doctor, therapist to therapist has been frustrating, time consuming and confusing at best. Everyone has a different take on the best therapies, the right diet, the reason for meltdowns, and the best way to parent a child on the autism spectrum.

I was introduced to autism through a letter from a developmental pediatrician that arrived on a Friday. Knowing nothing about an ASD, I perused the internet until my eyes could no longer focus and my brain was overwhelmed from information overload. My son was unsuccessful in school from the start. Even though everyone was well aware of his diagnosis he brought home, almost daily, note after note about what he did wrong each day. It was very clear that his teachers did not understand him and for the most part were at a loss as to what to do. Each year became more difficult for him and the once smiling and happy child that had such a desire to learn began to fade off into a distant memory and a dark, angry, defeated child began to emerge.

As a single mom and primary bread winner in our family it became increasingly difficult each year to be able to function as both full time employee and full time mom to my son and his non-autistic younger sister. Constantly being called away from my work to go to his school and "rescue" the teachers from his meltdowns became daily routine. Although I tried very hard to partner with his school it became increasingly difficult and his IEP (Individualized Education Plan) began incorporating less time in school and more time with mom.

I fought, from the very beginning of his diagnosis, to get therapy that insurance did not cover, to get financial assistance to help cover therapies, which I was not eligible for either because he was "to high functioning" or I made to much money. I made barely enough to cover our monthly expenses but it was still to much to get help. According to the Department of Social Services he did not qualify for the DD waiver or the EDCD waiver because he was to "high functioning". They refused to even come out to do the evaluation. By the fifth grade his school anxiety was through the roof. His psychiatrist doubled his Concerta (used for anxiety). My son became suicidal within 24 hours. It was one of the most devastating events up until that point. This was a very dark tunnel. I called his doctor who said take him to the psychiatric unit for pediatrics at the hospital near our home. I did so and was told upon arrival that they did not know what "I wanted them to do about it". He and I both paced the floor for two hours waiting, waiting and waiting some more. No one ever came. I drove my son around in my car all night. The rhythm of the driving was the only thing that seemed to calm him. Our mental health system failed us.

By the time Fifth grade rolled I was at the top of this giant roller coaster holding on, white knuckled, for dear life as my family started descending into the unknown. We were all terrified.

It was nearing the end of his Fifth grade year. It was a Friday in May. The end of the school year was a few weeks away. He had just returned to school after a week of absence due to Strep throat. He had frozen a can of Coke the night before to take to school, hoping that is would be like a slushy by lunch time. I happened to be in the principals office talking with her about my concerns for the transition to middle school. We were interrupted by his teacher, unaware that I was standing there, who came storming into the office stating very strongly "Well, Matthew Davis is back and he is already causing problems." The principal looked mortified. As the teacher realized I was standing there she said to me "You need to come talk to your son, he has something leaking from his backpack and he is refusing to clean it up!", she then stormed out. Long story short, as the principal and I entered the hallway we found my son sobbing on his hands and knees cleaning up the Coke that had leaked form his backpack. Four teachers were in the hallway, three were throwing paper towels at him while the other kicked a trash can at him and told him to make sure he got every paper towel in the trash. When the principal intervened she was told by the Senior Special Education teacher that "he was quite capable of handling it on his own." She then turned on her heel and walked away. I took my son out of the public school system right then. The Special Education teacher told me that I would "fail" home schooling him and that we would be back. I resigned from my state job on Monday. I know, quitting a job with benefits sounds ridiculous but the alternative was to lose my son to a broken down system and I will never be willing to do that, ever. We hit the bottom of the roller coaster ride.

Now it was time to climb back up. I had already started working on Richmond Autism Integration Network and Camp Free2BMe in 2011 and by the time I took my son out of the public school in 2012, I decided it was time to launch summer camp. The first summer was extremely successful. I will never forget climbing on the bus the first day and looking at all the kids gearing up for a day at Maymont Park. I was happy and terrified at the same time. "What am I doing", I thought to myself, "I am making a difference, not only for Matthew but for other kids like him" and the bus rolled out.

It has been almost two years since RAIN began. In that time our summer camp designed specifically for kids with an ASD has served 36 students. RAIN After School and RAIN Academy started on January 6, 2014.  Both programs are gaining new students daily. We have a new partnership with the Henrico County Public Schools, one of many we hope to establish in our community. We are so blessed by the parents and their children. We hug, we laugh, we cry and we stand together to help through the tough times. We celebrate our children's success and we have become like a "family".

Climbing up that roller coaster again has been difficult to say the least. Every bump of the ride has been felt. Our first attorney never did the 501 C 3 paperwork slowing us down by a year. I ended up doing it. What a pain that was! Then the IRS lost our application. It traveled to three different states before landing in New York. It was approved right away only to be slowed down again by the government shutdown for another 6 weeks. My personal savings ran out in August 2014. Funding the majority of RAIN has been difficult but so worth it.  Ultimately though, the lack of a steady paycheck has lead to the need for us to move from our home for the last five years, by the end of this month. The building we rented for RAIN had another tenant who would not move out until the end of November. Due to this we were unable to open in September but were still required to pay the $3300 a month in rent. Personally, I had to apply for Medicaid, as we had no health insurance nor could I afford it. Yes folks, to many, people on Medicaid are losers. Let me just say that this was a difficult thing for me to do but it was necessary.  Over the last two years our family has been challenged by my Fathers illness, the premature birth of my beautiful granddaughter, the loss of a beloved pet, relationships that have dissolved and just those day to day things that happen regardless of how hard you try. This upward climb has been stressful in so many ways, but once again, so worth it. I know, it all sounds crazy.

If nothing else my faith in God has become stronger than ever before. I know that this journey started with faith the size of a mustard seed but it continues to grow daily. Just when I think that things are falling apart God sends in someone to make it better. Faith and prayer carries me daily and on those days when I just cant stand it any longer, I kneel. A new home and a new part to this journey are right around the bend!

When RAIN began my son was an angry kid. He was hurt and had no sense of value. He refused to learn, refused to use his God given gifts and shut down to the world. But that was then and this is now. Over the last two years my son has grown! He looks forward to school, he is making friends, he is becoming inquisitive and starting to use his talents again. He smiles, he laughs, he greets people, he shows concern and he is becoming the young man I always knew in my heart, existed. It is not just my son that I see this. The kids that we have the honor to work with are coming in happier, they are growing, becoming comfortable in who they are and feeling accepted. We are seeing the light at the end of this tunnel.

People who come to RAIN ask what it is that they feel when they walk into our building. "It feels different" they say.  We discovered how important it is to allow all of our students to be free to be themselves. The way we do this? I  guess one could say that  we discovered the "secret" to working with these special kids and we try very hard to share it with everyone we meet. If everyone did it the world would be a much better place. I only wish we could post our "secret" on the walls of every school. The secret is... LOVE

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil, but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. 1 Corinthians 13:4

This time, as I descend down this roller coaster ride in life, I will not be covering my eyes, I will not be looking at how far I need to go. Instead, I will be looking at how far I have come and as I round the bend, eyes wide open,  I will keep my eyes on the light and I will continue to share the love.


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