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.


 

Sunday, August 11, 2013

We Need Your Help!

As I reflect on this last year, I am amazed at how far we have come with RAIN. Starting a non-profit for kids with Autism was at one time a dream that seemed an impossibility. As a single mom of two awesome kids, one on the spectrum, with a full time job that I not only loved but also sustained us, the thought of stepping away from that job and the security it offered us was terrifying. By June of 2012 though, I had no choice. I knew my son was not going to make it in middle school. No way at all. I knew plenty about my son and kids like him but I knew absolutely nothing about how to start a  non-profit.

With Non-Profit for Dummies in one hand and all of my savings in the other (and it was not much I can assure you) I took the leap of faith and launched Richmond Autism Integration Network (R.A.I.N.) and Camp Free2BMe. I must admit I like the acronym but that name is a mouthful when answering the phone! The name came from way to much time sitting in traffic at the Hampton Roads Bridge Tunnel. I did not have much in the way of guidance in the beginning and I made a few mistakes. Nothing detrimental but none the less mistakes. An example would be not really shopping attorney's. I found one that I thought was just perfect (the first one I met) until about a year into it and then I found out that he "forgot" to file our 501 c 3 paperwork! I ended up filing it myself after another 6 months of trying to understand it.

Last summer was our first summer for Camp Free2BMe. It was an awesome three weeks and I had the privilege of meeting some amazing kids and their families. They all became a part of my own family. In September we started a support group that would meet on our side of town. This too, was successful and again I learned so much. One of the consistent themes we discussed was the difficulty our children had in school. So many parents shared stories of bullying and isolation that occurred in the school. Some were asked by guidance counselors "off the record" to remove their children from school and home school because they could not guarantee their child's safety and other parents reported unacceptable treatment of their children by the teachers. Yes, that's right, the teachers.

With all of the stories and concerns, slowly the idea began to form of creating a home school "school" for our ASD kids. A place where they could go and learn their way. A place that they could call their own, where they could create and be just who they are. Two weeks ago the R.A.I.N. team, which consists of Catherine, Bryan, Kim and myself, signed a lease agreement and moved into our new building. It was so exciting. As we walked through the place we thought of our camp kids and their families and we envisioned just the right spot for each. Jake can use this space as his science lab and Matthew can create in this kitchen! We envisioned Friday night movies with family and a Saturday Kids Club where parents could drop off their kids one Saturday a month and go have a date with their spouse or shop with a girlfriend worry free. We envisioned an after school social/life skills program for the middle/high school kids that need more help with building relationships. We want it to be a hub for the Autism community to call their own.

As I said in the beginning, I am truly amazed at how far we have come. I think it is important for everyone to know just how important this is to us and how committed we are.

Catherine has been driving from Colonial Beach, VA (an hour and a half one way) almost every day for over a year now. She works a small part time job. Her husband works in Maryland, she only gets to see him two days a week. It is nothing for her to put in 12 to 14 hour days. She has worked as an advocate in the schools and the courts for some of our families. She has amazing dedication and passion for what she does and she loves our kids.

Bryan has worked multiple part time jobs to make ends meet so he can be available for whatever we need him to do. We needed our own bus this year and a driver so Bryan went out, got his CDL and bought the bus at auction. He has really stepped up to the plate and is involved in all aspects of  R.A.I.N. He loves working at Camp Free2BMe and the kids really love him. He got involved last summer after he lost his job. It was supposed to be temporary but he has no plans of going anywhere and is determined to see R.A.I.N. grow and become what we all envision it to be.

Kim moved back to Richmond from South Carolina. She had expressed an interest about a year ago when we were chatting on Facebook. Kim loves to do the administrative stuff, like paperwork (yuck!) and she does a great job! She works hard to keep us organized. She is new to our group but she is also dedicated and hard working.

We have all invested an immeasurable amount of time and money into RAIN. I personally have not only put everything I had financially into RAIN but I also started our thrift store with 90% of the goods from my home. I used to have an Ebay store and it was all up in the attic so I dusted it off and started a store for RAIN.  I bet you did not know that none of us are getting a paycheck from R.A.I.N. That's right, we are currently all volunteers.  We work seven days a week and we are so determined and dedicated to making this happen!

We need some help though. We need your help. We are just four people. We can't do this alone. We have bus insurance ($3800/yr), building insurance ($2500/yr), rent ($2200/month), utilities ($260/month), curriculum to purchase and all the other things we will discover we need once we are moved in.

R.A.I.N. is not just for my son, it's for every family affected by Autism. Please help us make this home school "school" and after school program happen for our kids. We want to expand Camp Free2BMe. We want programs like ours across the country. 

One of our campers told us this past Friday that the reason he liked our camp was because at Camp Free2BMe "people get him." We want this for ALL persons with Autism.

You can donate through Paypal:  Donate@RichmondAutism.Org
or mail a check to:

RAIN
1121 Gaskins Rd.
Richmond, Va. 23238



 

Monday, September 3, 2012

A Lesson from Tadpoles

We have this little pond in our back yard with a small waterfall and several full grown (five I believe) frogs. One of my favorite things to do in the morning is grab my cup of coffee and my faithful cat Max (that's right, I said cat) and walk my yard. I usually follow the same path every morning. I have taken up gardening in the last three years and I love to see all the plants that I have planted grow and bloom. Who knew that the daughter of a self proclaimed plant killer actually had a green thumb! (Side note, my mother's nickname at the local florist was "Croaker" and it had nothing to do with frogs.) Anyway, the morning walk ends at the pond to check in on the frogs and the other natural inhabitants that live in and around it. My favorite thing to do though, is to watch the tadpoles. At the end of the summer in 2011, I happened upon a great deal at the local Big Lots. A huge round above ground swimming pool reduced from $300 to $60. "What a steal" I thought and I bought it. The kids will love this, it will encourage exercise, etc. I obviously did not think this through very well. It never occurred to me the amount of time and effort it would take to maintain this monstracity and it took away from the aesthetically pleasing look of the yard that I had been cultivating for the last few years. It did not take long before overly excited kids, both mine and ALL the kids in the neighborhood (never knew we had so many)caused a tear in the bottom. Although my son was extremely upset about this I was somewhat relieved. Between the chemicals and the algae,that was insistant upon NEVER going away no matter what I did, I was glad to have a reason to shut it down. Sure, I could patch it, and yes, I was glad the kids had a fun place to hang with their friends. I would much rather them be here with me than roaming the neighborhood and even I enjoyed a dip or two, but going to the neighborhood pool looked way better now that we had tried owning our own pool and it was actually cheaper! Let the draining begin! It seemed like it took forever for that thing to drain. Really it was only about a day but when I want something done I just want it done and I not the most patient person. Virginia weather has been a little crazy this summer and quite uncooperative when it came to taking down that pool. Even though we had "drought" conditions it seemed like every evening there was a shower. With a couple of inches of water in the bottom of the slightly unlevel pool I was in a bit of a quandry as to how to get the last bit of water out. It was to heavy to lift and to shallow to drain as the drain was higher on the side of the pool. So the water just sat and sat....and sat. Okay, a week has passed, summer is busy and the pool has been cast to the side for the moment, until one evening around 9 pm when it sounded as though all of the frogs in the neighborhood decided to have a pool party in my pool and I was not invited. The "singing" was really loud. Loud enough to coax me out into the yard to see what was going on. The security light over the pool came on as I circled it and peeked over the side. One, two, three, four...Nine...I counted nine little frogs swimming, floating and clinging to the side of the pool. They were so small and cute. I watched them for awhile and then called it a night. The pool sat for a little while longer. On a particularly hot evening, just before yet another rain storm, I noticed my daughter and her friend climbing into the pool with cups, scooping up water, and then climbing out and running to the pond. What are they doing? Helping mom drain the pool? How sweet. Actually, as I got closer to the pool I realized that they were not draining the pool for me. It seems that the frog party resulted in hundreds, no, thousands (or so it seemed) of tadpoles. The girls were concerned for their safety and were attempting to rescue them. After about thirty minutes of this they were exhausted and the rain had started. We all abandoned our outdoor projects and ran into the house. "Mom" my daughter asked,"What are you going to do with the tadpoles? You can't kill them mom! Please don't kill them!" First of all I had not really even considered the tadpoles as I knew not of their existence until now and second of all, I could not kill one intentionally much less all of those swimming innocently in the bottom of our pool. "I don't know Lou" (that's her nickname) "let me think about it." The next day I went out, bucket and cup in hand, to start scooping tadpoles. The water was gross and green, the tadpoles, uncooperative and the sun, hot as ...well you know. This is never going to work, I will be here forever trying to "rescue" these tadpoles. Hmmmm....I needed something bigger. Turns out the pool net that we use to clean out the debris was perfect! I could scoop a large amount of tadpoles, run across the yard and drop them into the pond before they suffocated! Back and forth I went scooping these tadpoles. My next door neighbor just watched and chuckled. "Whatcha doing Robin?" he asked. "Rescuing tadpoles" I answered, breathless from my umteenth trip to the pond. "Good for you!" he replied, "I would have just drained 'em" and he walked into his house chuckling to himself the whole time. I believe I even heard him mutter "crazy neighbor" but I could be mistaken. As I ran back and forth scooping I found myself talking to these tadpoles. "Come on guys, cooperate. Don't you know I am trying to save you!" Some would swim away as soon as my feet hit the bottom of the pool. Others swam right into the net. I worked and worked trying to catch every one. Over the course of three days (yes I know, I must be a little crazy) I scooped. What was even more interesting though were my thoughts and feelings as I scooped. I thought about how every tadpole life in that pool was important to me. I thought about how I did not want to leave any tadpoles behind. I was frustrated with the ones that would hide or get so close and then disappear into a dark crease, in the side of the bottom of the pool floor. The little ones, newly hatched, were easier to scoop up. They were niave I guess. The larger ones, some even starting to grow legs, were harder to catch, determined to do things their own way, hiding in algae or trying to "outrun" my net by swimming to the other side. "Don't you get it" I muttered outloud, "I am tring to give you life!" As I released each net into the pond I felt good. The tadpoles immediately swam out into their new surroundings and began grazing on the algae, probably thinking to themselves "so this is heaven!" Well, I thought it would be like heaven to a future frog anyway. I must admit though that there were those that just refused to be saved. They hid and swam away. Each hot day passed and the water slowly evaporated until finally there was no more water to swim in and they just died. It made me sad to see those little tadpoles struggling for a last breathe or dried up on the pool floor. "I told you not to swim away. Why did you have to be so stubborn!" I muttered to myself as I sadly counted the ones left behind. I did everything I could, but I could not save them all. Every morning as I stop by the pond and check to see how my little tadpoles, that are not so little anymore, are doing, I reflect on that simple experience and I think how God must feel as he reaches out to us all through his son Jesus. How frustrated he must feel when he puts people and circumstances in our path to lead us to him and we still run away and hide. I think about how heartbroken he must be as some try to "outrun" him and as a last breathe is taken a soul is lost because it was niavely thought that the world offered an easier and better way. Jesus said that he would make us "fishers of men". I realized that if I put at least half of the energy I used rescuing tadpoles into witnessing to family, friends, co-workers and even total strangers, then I will have done what he has asked me to do and that this is good. Possibly I too can help to cast the net that leads another to salvation. Life's lessons can come from the simplest things, like frogs and pools and tadpoles.

Tuesday, July 3, 2012

Camp Free2BMe

Almost two years ago I had a dream. The dream was to find a place where my son with Autism would fit in and be just what he was, a child. A place where he could be free to be just himself. Not the autistic kid or the quirky kid or the difficult, angry, depressed kid, just Matthew, the funny, artistic, smart, sensitive kid who just wanted a real friend. The kind of place that he would remember fondly as the place where he could use his imagination and create art the way he saw it, a place where he could attempt to climb the biggest tree or catch his first fish with a pole or learn how to overcome his biggest fears, the fear of never belonging, the fear of rejection, the fear of not knowing the right thing to say or how to express his feelings. A place that most of have known and experienced, a place that we can go back to anytime we want to and remember some of the good things about our childhood. A place like, summercamp. I searched the internet for days and much to my dismay could find nothing designed specifically for children with a primary diagnosis of Autism, Asperger's Syndrome or related developmental disability in Richmond or even the state of Virginia. It was during one of these very frustrating moments that the inner voice that we all hear at one point in time or another said "go ahead, you get something started". My first reaction was to chuckle and then of course the arguement ensued. Sure, I thought, great idea, I have no clue on how to start a summer camp. I know nothing about non-profits, I am a single mom with two children under the age of 12 and I need a full time job with benefits! However, by the next day I was reading everything I could about how to start a non-proft, summer camps and activities for children with Autism. Call it insanity or a leap in faith (I personally choose the latter!)but in August 2011, Richmond Autism Integration Network(RAIN)was "born" and on June 29, 2012 (not quite a year later) I officially resigned from my full time State of Virgina job with benefits to open Camp Free2BMe. The vision of a summer day camp experience gradually became more clear as creative, passionate board members joined the team. What makes Camp Free2BMe unique is the design. We wanted non-autistic children who know very little, if anything, about autism to learn about their peers. We decided to pair two non-autistic children with one child with autism. We train them in Autism 101. We then go out into the community to do fun things as a group. The non-autistic children learn about their peers and will take this positive experience back to their schools in the fall. All of our non-autistic youth are volunteers from the local middle and high schools. They will receive school credit for their time but they will also recieve a priceless education about Autism. Our Autistic youth will be given the opportunity to be who they are and to learn social skills from their peers. Everyone is so excited about camp! Our biggest need right now is the same as anyone else's, funding. We need a bus. That is our biggest expense and our biggest challenge. Many in the community have offered discount rates for activities. We have Laser Quest, bowling, Putt-Putt, therapeutic horseback riding,a vertical tree climb and canoeing at Pocahontas State Park on our to do list! As a woman of extreme faith, I know that this is going to be an amazing summer for our campers, their peer buddies and all of the families that are involved. I figure if God can part the Red Sea then he can cetainly provide us with a bus! As I begin this new journey of faith (and lots of chocolate!) I will keep you posted with pictures and camp experiences. Feel free to check out our web site: www.RichmondAutism.Org and give a shout out to us anytime. We also are happy to accept donations. All donations are needed and appreciated! Whether it is a gift of time , talent or monetary, we will never turn your giving away, just as we never turn away a child that needs our camp. Regardless of finances, we always work with our families!
I can't wait for Camp!!

Wednesday, May 23, 2012

Leap of Faith

When do you know that it is time to make a change? I'm not talking about swapping out a toothbrush, buying country instead of classical or dying your hair red. I'm talking about a significant change, one that will affect the way you do life, the way you make decisions and ultimately, your retirement. How long do you wipe your child's tears as they once again cry in pain inflicted by unkind looks and words that are daily thrust upon them in the classroom, the hallways, the lunch room and the playground. When do you take a stand and say "No More!" For me, like most single moms in America, wearing multiple hats is not unusual. There is the mom hat, the sister hat, the daughter hat, the employee hat, the advocate hat, well, you get the picture. Working as a full time employee for the State of Virginia and being a full time mom to an eight year old daughter (trying very hard to be 18) and to an eleven year old creative and quirky son who just happens to have Autism, is enough to keep me busy way more than the meager 24 hours alotted in one day. Trying to maintain structure and balance by someone like me who is so ADHD that it's just ridiculous, is virtually impossible. Add to the regular day to day challenges of life the battle you must wage constantly to protect and/or advocate for your child, I am surprised that there are not more runaway parents. Wearing all these hats also includes my favorite (not) the hat of provider, better known as the one who buys the groceries, pays the light bill, the mortgage, the car payment, insurance, extra curricular activities, school fees, water bill, trash pick up, vet bill, co-pays and parking tickets (stupid 10 minute parking at a downtown bank, seriously!) Sometimes I find that hats become old and frayed. Sometimes hats can be repaired and sometimes they just need to be discarded. The problem is which one do you discard? After eight years of advocating, wiping tears, searching for the right "fit" in a school, I finally realized that my family and I could not do life like this any longer. We are all tired of doctor's, psychologist's, psychiatrist's, therapist's, teacher's and every other well meaning bystander in the line at Target who has witnessed yet another meltdown, offering their words of wisdom and making matters worse. We are tired of medications that cause headaches and grouchiness, we are tired of teachers giving up and peers calling out names like stupid and loser as we pass them on our nightly neighborhood walk. My son does not have the skills YET to be able to successfully deal with the negative blows he is dealt daily. He certainly is not going to gain any social skills in the public school system. If anything he is getting an excellent education in how to lose your self esteem in just one day. As the wearer of multiple hats it occurred to me that the one I would least expect to "discard" is actually the one that really needed to go. Maybe not go, but definately change! In February 2011 I thought I would get an early start searching for a summer camp for my son to attend. Much to my dismay I did not find anything in my town. I mean nothing. Yes, there are camps but they are all for either "neuro-typical" children or children with many different types of special needs. There was nothing specifically for children with a primary diagnosis of Autism, Asperger's or other related developmental delays. I started searching some of the caregiver sites looking for a nanny or someone who had experience with Autism. I typed in the word "Autism" and hit search. Wow! There was message after message from desperate parents seeking a "friend or anyone to spend time with" their child. "We will pay top dollar for a friend to take our son to the movies or just hang out." I was heartbroken. It was then that I asked God for a way to be able to help not only my son but others going through the same thing. It was then that it was placed on my heart to start a summer camp for children with Autism to be just what they were meant to be, children. In August 2011 after thinking, talking, researching, seeking and thinking some more, Richmond Autism Integration Network (R.A.I.N.) was born and the journey began. Over the last year I have talked with and written to countless parents all sharing the common bond of a child with Autism. Everyday a new idea, new comment, new insight and new friend came to be. I have been so excited to be on this journey and I have learned so much from my son. I started looking at him for who he is not who I wished he would be. I have watched him grow with me, both of us learning about each other, both of us striving to be the best person we can be. School has been a disaster. I think his teachers gave up on him before Christmas. As his mom, I will never give up on him. I will do whatever it takes. With this said, I made the bold move on Friday to withdraw him from school. When I observed several teachers standing over him in the hallway, throwing paper towels at him and kicking a trash can at him as he was on his hands and knees sobbing, trying to clean up the Coke he had spilled and NO ONE helped him. That was it. That's what it took and I am ashamed of myself, in a way, that I did not know it was that bad at school. He tried to tell me but he could not find the words. So, not only have I been wearing the employee, advocate, started a non-profit hat, but I also felt the need to add one more, the home school educator hat. I don't know if I would call it a "leap of faith" or pure insanity, but on Monday I resigned from my full time, salaried, state job, with benefits. I guess deep down I have known that it was time to make a change, I was just a little afraid (oh ye of little faith!)The way of life that I have always known changed in an instant. The look on my son's face Friday said it all. So, the plan is to continue to grow R.A.I.N. and to home school. I was blessed recently with a part time on call position for a local home health agency and actually have been approached by two parents in the last two days who have asked if I will home school their sons too. I don't know what God has in store but when I asked him last February to make a way for me to be a stay at home mom by June 2012, he did exactly that and then some. Doors are opening and my son is smiling again. I will miss the veterans I work with tremendously but I know I did the right thing. So, I did not discard the provider hat I just changed it a little. This is definately a new path and this chapter of my life will close fully on June 29th. I can't wait to turn the page and start "doing" life in a whole new way!

Friday, April 20, 2012

Reflections of My Father

I have never imagined my life without my Father in it, ever. I guess like many people I just took it for granted that he would always be right there for me, no matter what. As I sat in the hospital waiting room today with a slowly ticking clock and fast paced people, I found myself reflecting on my childhood with the first man that I have ever loved, my Dad. I was adopted as infant in 1964. Back then adoption agencies tried very hard to match adoptive parents with children that shared similar characteristics. When the Childrens Home Society matched me with my Dad they could not have made a better match. We both had thick wavy brown hair and the same nose. We are both quite opinionated, always enjoying a good debate at the family meal. We both love animals, love to read, love to learn, love the Lord and love our family. Unlike me, however, he doesn't like to show his feelings, but you can always look into his blue eyes and know exactly how he feels. I remember the long conversations we had when I was just a little girl of maybe five or six. I used to sit on the commode lid in the bathroom and watch my Dad as he shaved. I am sure we discussed deep things like all fathers and daughters do. Caterpillars, butterflies, puppy dogs and daydreams, we covered it all. As I grew older he participated in just about everything I did. I remember looking out into the audience when we had our school play and there he would be with my mom, looking as proud as a Dad could. Father-Daughter dances at school, trips to the beach, sitting with him in the recording booth at church on Sunday where he recorded the service for those who could not attend, reading together, working in the yard together, my first real date...Ahhh yes, that first real date. I will never forget the sadness in his eyes. I think he was realizing that his little girl was growing up. That was hard for him and me. I have always been a Daddy's girl and quite proud of it. I have always been so proud of my Dad. He taught me many things. Most importantly he introduced me to and taught me to love the Lord. He instilled in me his morals and values which have indeed served me well. As I reflected I became very aware of time and just how short it truly is. I was remembering us, my Dad and me, as if it were just yesterday. He is still the most handsome man I have ever known. His hair is still thick and a beautiful silver gray. His wit is just as sharp and he still knows how to make me smile just like he did when I was a tiny girl. He has always been my biggest fan, encouraging me, offering words of wisdom and giving big hugs that only he can give when I needed them the most. I wondered what he thought about today as he headed for surgery this morning. I wondered if he knew that I was praying for him, asking God to guide the hands of the surgeons and to perform a miracle on his ailing heart. My Dad made it through the surgery but still has a long way to go. I did not want to leave him in the Cardiac ICU alone but the nurses made me go home. Right now I am grieving for all the time I have missed as an adult with my Dad. I just took it for granted that he would always be here and suddenly, today, I was rudely awakened by the fact that he is human. My Dad, my hero, is human. I wish I had played tennis with him back when I was younger and he wanted to so much, but I was to busy. I wish that I had stopped by the house more just to say hello. I have realized today that things have to change in my life and in this world. We move to fast. We want bigger and better. We need to make more, buy more, go more..Not this girl. Nope. I quit. I want to live comfortably, trusting God and enjoying my family. Time is to short. I want to be with my kids, my Dad, the ones that I love. No more rat race, no more overtime, no more rushing... Please God, just a little more time...

Tuesday, April 3, 2012

The Winds of Change (This is a Quick note!)

I walked into a friends office this afternoon and stood before his desk with a big smile. "Whooooshhhh" I said to him. He had been intent working on his computer, but stopped upon my loud entrance glancing up at me with that  all to familiar Robin you are crazy, look. "Do you know what that is?" I asked him. "That my friend is the winds of change!"

Ever have a day when you just need something, anything, good to happen? It could be as simple as finding a long lost $5 bill in your pocket or maybe just a smile from someone as you stand in line, forever, waiting for your lunch. When you work a job that is driven by how many people you can get through your front door and currently those people just are not coming, it can be extremely stressful. When you leave that job and go home to "work" your full time for the rest of your life job, also known as  Motherhood, it can be a little overwhelming, especially when you have a child that has his own unique perception of life. There are days where I tend to feel like "why bother" because neither job is going the way I had hoped or planned.

About six weeks ago I took , as best as I possibly could, gluten out of my son's diet. As a mother always researching and looking for ways to help my son diagnosed with Autism, it seemed only natural to do everything humanly possible for him. That's what we do. Although I could see changes at home I had not heard of anything getting better for him at school. School is our biggest challenge and where the difference really needed to happen. After changing his diet, we saw such a difference so quickly that we were able to start weaning him off of his medications. They did not seem to be helping him anymore. Of course we consulted our "Autism Team" of clinicians before doing this. Most did not think the gluten free diet would show much but did not discourage me with the plan.

Also over the last several weeks I have been working with Matthew on understanding things that I took for granted that he already knew, example, what room the "living room" is. He asked me where his Nook was and with my back to him as I was on the computer (again!) I told him it was in the living room. I heard quite a loud sigh of exasperation. What Matt? What's wrong? Again a loud sigh. Please tell me what the problem is. (This is usually when I start getting frustrated) He said to me in quite a matter of fact tone, "I don't know what that is, we live in every room in the house!" So, as you can see, there was more work to be done that I just did not realize until that moment.

All of this brings me to today and "the winds of change." I received an email today from my son's homeroom teacher at school. " Hi Mr. and Ms. Davis. I just wanted to let you both know how much of a noticeable difference we've seen in Matthew over the month of March. He has had little to no daily issues, and I don't think he has been marked for anything at all these last two weeks." (Marked meant that his "behavior sheet" did not come home marked with anything that he had to be warned or disciplined about.) "In addition we have seen a change in his tone....a more pleasant voice, asking questions instead of yelling at people, remembering his manners, participating  and interacting more with other students..." You get the picture. Wow! I was so pleased. It was so nice to know that something we were doing was working and that it was noticed and appreciated. I know Matthew had noticed a difference but the school was not aware of the changes we made at home, so this was like gold to me. Things are improving in our lives at home and that is the "winds of change" that made me smile today. Hopefully the winds will keep blowing away the old and ushering in the new...

Well, gotta go, my kids are hollering for me to come watch a movie with them...awesome huh?!