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!!

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!

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?!

Letters to God~ Finding Time

Dear God,

I don't really know where to begin this letter. I talk to you quite a bit throughout the day anyway or do I? I thought I did but in reflecting on my day today I realize that you barely even got a "good morning" from me much less any inclusion into the events of my day. Everyday, including the weekends, seem to start off harried. It doesn't even matter how early I get up, as I am seldom, if ever, on time. My mornings consist of feeding kids, cats and a dog, trying to match socks, find homework, check the weather and trying very hard to stay on task. As you know, I am easily distracted by a hair ball in the hallway or the toaster that was left out from morning breakfast. I keep finding myself distracted by everything. The only thing I am not distracted by is preparing for my day. My son has absolutely no interest in school. As a child with Autism school is extremely difficult for him and he shares this with me in his morning greeting. "Good Morning Matthew!" I say. "I hate school" he groans. Deep breathe on my part, moving on to my daughter. Fortunately for me she has a better outlook on school but still wants Mommy's help with what to eat, what to wear and everything in between. Do you find us comical in the mornings Lord as we stumble on top of each other racing to the bus stop? I am sure when you greet me in the mornings I am barely aware. I take notice of little except the ticking clock.

The duties of my day job, juggling doctor's appoinments for my son, housecleaning, homework, dinner, grocery shopping, taking out the trash, feeding the cats and a dog again, working on the non profit I just started, trying to get the kids in bed at a decent time only to fall into bed exhausted myself, it is a never ending cycle. As I take two seconds to look at my schedule I notice that I have not dedicated time for us. Actually, I am amazed I find any time with you at all. A quick prayer under my breathe does not constitute a full fledged relationship. As a matter of fact, I had no idea that from a relationship perspective, ours would be labeled "its complicated" on Facebook!

As our world is right now, everything moves at such a fast pace. From fast food to instant everything, life is hurry, hurry, hurry. A relationship can be fast but those types are usually quite shallow, only on the surface. It takes time to get to know someone. I realize that you know me better than anyone. You knew me before I was born and you have been with me every step of my life. It is my yearning to know you that brings me to this first letter. I want to know who you are. I want to know your character, what makes you smile. I want to sit at your feet as Mary did and listen to your heart. I want a Mary heart in a Martha world. Time to take this relationship to the next level. Time to commit to spending time together. I am not a morning person by any stretch of the imagination, however I will make our date for before sunrise. I believe it is the only time I can get right now to call ours. I will ask you though, if you would, prepare the way for me to have some quiet time? Help me to alleviate the unneccessary clutter from life so that I not only can spend quality time with you but also with my children. Help me to say no when neccessary and to use the time I am given each day wisely. Help me to stay focused and on task and help me to know you.

"If you are pleased with me, teach me your ways so that I may know you"
Exodus 33:13

I may be a little slow in the morning but I will be there...

Love,
Your Daughter
                   Robin

The Start of Something New...

Today I begin a new journey! I am so looking forward to see where it takes me. I wish I could tell you that I am heading to some exotic island where the waters are crystal clear and swimming with dolphins is a common occurence or that I have won the lottery and all of my financial concerns have been laid to rest, therefore I am taking all of  my family and friends on vacation with me. No, this is a different type of journey. Better than crystal clear waters and swimming with dolphins? Absolutely! This journey will take work though and discipline. The latter will be the challenge for me as anyone that knows me knows I am classic ADHD. All over the page, easily distracted, at least ten different projects spred all over the house and  spilling over into the yard, but I am determined to take this journey and savor every minute of it. I do not have to rush around and pack bags nor do I have to board the dog or clean out the refrigerator of perishables. I don't need a passport, money or transportation. This journey, I believe, will open my eyes and my heart to those things I am desperate to understand. I have tried everything else in my own power and it's not working. I am ready to try something new! If I get answers then it was all worth it and if not, then I have lost nothing. Besides, God invited me on this journey. Who am I to turn down such an invitation?

Jeremiah 33:3 says "Call unto me and I will answer thee and show thee great and mighty things." Bet you did not know that God had his phone number listed in his word did you? I called him yesterday as I sat in the bay window of my living room watching my children play in the first, and possibly only snowfall of the winter season here in Virginia. I watched my 11 year old son diagnosed with Autism, Asperger's Syndrome specifically, and my "neuro typical" daughter throw snowballs with the neighborhood kids in the dimly lit snow covered street in front of my house. Their laughter echoed through the neighborhood and I smiled, warmed by the idea that at this moment all were accepted. I asked God why this could not be all the time, I asked him why my son had Autism and why he had not healed him yet, I asked him why my daughter should have to struggle so much, torn betwen protecting her older brother and finding her own place in this world.I asked him why I get so angry at the smallest things these days, why am I so rushed and why I can not seem to find the time to just breathe.  He answered me in his own gentle quiet way, just as a Father to his daughter. He asked me to join him on a journey. "There are three requirements for this journey" he said. "First, give me forty days. Nothing more, nothing less. Second, devote time for us to talk and share every day. It matters not what time of day just make sure it is every day. Get deep into my word and I will show you what you seek. Third, write letters to me. Pour your heart out and be who your are."

So today a new journey begins. Have you ever done something like this? I am not sure where this new path will take me, but I am certainly ready for the challenge. I'll be posting my letters and thoughts along the way. Join me in this venture and expect something great from God!


~ Robin

God's Gift

Hello God? You there? Yep, me again. Do you have a minute? I recall somewhere in the Bible, Matthew 11:28-30 I believe, where you made a statement that says “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Well, here I am, wiped out, emotionally exhausted, totally at a loss and trying very hard to unload all of my frustration onto you. I am definately weary and I am holding you to your word. Are you ready?

Does this have to do with my son? Yes God, this has to do with my son. I know, we discuss him a lot. Yes, I know he is unique and beautiful and amazing. Have you noticed how he pays such close attention to detail? He sees the beauty in life that I almost always miss. If it wasn't for him pointing out the fine hairs on the caterpillar or the brilliant yellow under the wings of a bird or the intricate details in the architecture of our church I would have missed it all completely. He can be so quiet sometimes that I don't even know he is there, but he is always thinking and creating. Yes, I know he was made in your image...wow, I did not know you had AUTISM God! This is the first time you mentioned it. I can certainly see some similarities.

 So, this is how I'm feeling. I love my son with all of my heart and it is my heart that breaks for him a little more each day. I don't know if I can bare it. He is 11 years old now and his life has not been easy. He was diagnosed at age four with PDD NOS, age five with Autism and age 6 with Asperger's Syndrome. When he was younger he seemed happy, quiet, and at times, distant, but happy. He has always had sensory integration issues. Certain noises like the dryer buzzer or the sound of the vacumn cleaner cause him great pain. He was not and still isn't very coordinated so playing sports was not something he really wanted to do, but yet when he took swimming lessons last summer he mastered the breast stroke within minutes after learning it. His coach was so amazed by him. Did you know he can calendar count? Give him any date in the past, present or future and he can tell you what day it was, is or shall be. Even though I know he is really smart, he does not think so. His grades in school are poor, he has no friends and communication is so hard for him. He asked recently if "he would always be this way?" (very insightful if you ask me). He told me one day that he just can't find the words. He sees everything in pictures. He can't process conversations or things that he reads.  Kids make fun of him, teachers are frustrated with him, people in public make rude comments about him. Being in public can be hard for him, the sounds, smells, sights can be overwhelming and he becomes loud and sometimes angry. People look at us and whisper. He does not understand what he is doing to offend others and many times he isn't doing anything wrong, he just responds to some things differently than most. When he cries Lord, his tears flow like a river. His cries are deep from way down in his soul. I hear him crying in his room at night. His best friend is his cat. He tells her how lonely he is.  I don't know what to do any more God. Time is soaring past us and today I feel my hope dwindling yet again.

I don't understand why this has happened in our lives. I don't know what my purpose is for this situation. The pain of watching my own beautiful son struggle becomes unbearable at times. I am living my life on the verge of tears. I constantly ask myself if I am doing everything possible to help my son. What am I missing? I don't think I am handling things very well. I can not fix what is broken. He is so amazing and funny and creative and beautiful and .... Can you understand how hard it is to be ridiculed, misunderstood, whispered about?  Of couse you can. You felt all of the pain I feel as a Father for his son.

Hmmm? What's that? Who chose his name? Well, I did. I never thought I would have any more children. I had prayed for another son, remember? Matthew is the name that came to me and it was the only name I would consider. The meaning of his name? Yes, I know, it means.....Gift from God.

"Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning" (James 1:17).

I understand God, I get it. Just as you gifted the world with your beautiful and perfect son, you have also gifted me with my own. I would not have him be any other way.  Thanks for spending time with me and listening to my heart. It  feels much lighter now. Oh and God, thank you for my gift, my inspiring, amazing son, my Matthew.