After what, to me, seemed like the hottest summer on record, Charles Callahan DiMichele came into our lives the morning of August 6, 2003. He was a healthy, gorgeous little baby boy. Kevin and I were no longer a couple, but a family! Our first born had arrived and it was a son!!! We couldn't be more excited and nervous. He was this tiny little angel whom the doctors and nurses assured us was perfectly healthy!!!
After two days in the hospital we came home to our new lives. Sleepless nights, constant feeding and diaper after diaper after diaper! All was going smoothly. As the weeks go by we, as all parents do, start watching for the development milestones to come. Charlie smiled at 5 weeks, the most beautiful smile, and held his head up to look around at the world. He was perfect! Then the weeks turned into months and Charlie didn't hit the expected milestones as he should. He wasn't sitting up, rolling over or playing with his little rattles. When I began showing concern friends and family would say "He's fine, all kids develop at their own rate", "boys do everything late", or just "let him be". So I did.
My fears resurfaced I went back to work when Charlie was 6 months old and he went to daycare. He was clearly behind the other kids and cried constantly everyday! It was horrible!!! I expressed my concerns to the teachers at this daycare and they repeated what others had said before and told me not to worry. But not worrying was becoming harder to do. It was in daycare that he picked up every virus under the sun. Around 7-8 months old when I took him to the pediatrician for one of these daycare illnesses I mentioned that wasn't sitting up yet. The doctor asked me hold old he was when he rolled over. Panicing, I replied that he doesn't do that either. Her faced dropped and she handed me a piece of paper with a number of a neurologist and early intervention. What? He's 9 months old, why hadn't anyone picked this up at an earlier appointment? I went to every check up on time to the day, got every vaccine I was supposed to, followed the doctors guidance faithfully and they miss something this huge!!!! I leave call Kevin hysterical and drive to his office freaking out. Once I calm down I make the neurologist appointment and early intervention appointment from the parking lot.
Waiting for the appointments was stressful. I am googling everything I can think of and have diagnosed him with everything. Finally we get to the neurologist and after an exam, tests, and an MRI we are told he is developmentally delayed and has hypotonia or low muscle tone. We are told to get him in physical therapy as soon as possible.
After a few months of physical therapy that is not going well, Charlie is just crying every time his physical therapist comes, my worrying increases again. He is now about 20 months old. Although he began sitting at 9 months, rolling over at 11 months, and crawling at 18 months there is still something not quite right. It is recommended that we take him to see a developmental pediatrician. The thought of Autism had crossed my mind in the past, although everyone said I was crazy, but now I was really panicing about the Autism possibility. To me, Autism was no better than a death sentence.
I called some developmental pediatricians only to be told there was up to a two year wait list. Two years? Are you kidding? Fortunately, I began chatting with a receptionist at one of the offices about my situation and by some miracle, she must have felt for me, and managed to slip me in the next day!
We go and meet Dr. Godbole, who is such a nice woman. After a million questions, basic testing, and reviews of his medical records she agrees that he is developmentally delayed but hesitated to give him a diagnosis on the Autism Spectrum because he is "connected" to me and to those around him. I am jumping for joy!!!! I feel I can handle a delay but not Autism. I practically skip home with relief!!
As the days and months come following this appointment my optimism starts to wain. Two of my best friends had sons around the same time Charlie was born. We get together weekly for a playdate and each week I watch Charlie fall further and further behind his little peers. I can accept the delay in gross motor skills but I begin to notice that he is not interested in the toys they are playing with or interacting with the other little boys as they are with one another. I try to tell myself this is just because he can't due to his hypotonia but in my heart I know it is something more. Over time his therapy is increased to include physical therapy, occupational therapy and speech therapy. Additionally, I begin looking at non-traditional therapy. We start seeing a DAN! doctor (Defeat Autism Now) and begin a gluten free and casein free diet. I even begin hyperbaric oxygen therapy just before he is 3 years old. Although, he as of yet does not have an Autism Spectrum Diagnosis I begin treating him as though he does, secretly.
Just after his third birthday, Charlie began preschool through the Chester County Intermediate Unit. He is placed in a developmentally delayed classroom, not the Autism classroom, as he didn't have an Autism diagnosis. He cried everyday when I dropped him off, therefore so did I. He was miserable but I was told this was the best thing for him.
It was during this school year that we met with a second developmental pediatrician at The Children's Hospital of Philadelphia. My time on the ridiculously long wait list had come up and I figured a second opinion couldn't hurt. Well let me tell you the bedside manner of this doctor was terrible and this is one of the best children's hospitals in the world. We walked in and within minutes of meeting us and Charlie she point blank said. "Your son is on the spectrum". I begin crying. She then continues by pointing out that she knows that she is right because I am now obviously crying and Charlie doesn't care. Seriously, just like that. I know she is right but it was like she shot me in the stomach and had no interest in how it felt to me. Fortunately, we are already doing everything that she thinks he needs. She says she will send us a report and leaves the room. By the way, she is not longer a doctor at CHOP.
By the end of the school year, Charlie was no more adjusted than the first day. At the end of year party, it quickly becomes apparent to me that he is the most delayed kid in the room. My heart sinks. I approach the teacher and she and I discuss changing his classroom placement for the next year to a classroom with a longer day and with kids more like him. As now he has "the diagnosis".
The next year, he is now 4, he begins a preschool classroom that goes from 9-1. He eats lunch in the classroom. The kids are more like him and he cries a lot less. At home, I am researching and researching what else to do for him. We continue to see the DAN! doctor. He finds, through hair, urine, and blood tests, defincencies in important vitamins in Charlie's system. We begin supplementing him with these vitamins. Additionally, we start Tomatis, Floortime and Hippotherapy. We see no significant changes in him but see a major decrease in our savings account. Insurance covers non of what we are doing but we feel we have to try everything. We cannot leave any stone unturned. I will not run the risk of regretting something I did not try one day!
To cover the costs of Charlie's ongoing treatment we decide to downsize our home. It was a tough decision but ultimately the right one. After looking for a while we settle on a smaller house and move a distance of a little over a mile to our new home. Just after our move, in Charlie's second preschool year, I decide to hire a private Applied Behavioral Analysis/Verbal Behavior Therapist because we still aren't happy with his progress. This is the most common treatment for children on the spectrum and I have to try. Although the cost is between $2,000 -$3,000 a month.
The therapist came to our home 6 days a week for two hours after school. During the first year I see, what at the time I believe are, improvments. Yippee. At this young age of 4 Charlie working 6 hours a day (4 at school and 2 at home). I am happy, he is learning names of people, objects, to ask for what he wants. He still cries a lot but I have been told, and I at the time still believe, this is just how it goes.
Over the next two years his schedule continues like this and the money we made from our move quickly vanishes. By talking to other parents I am told this treatment is something I shouldn't be paying for instead the county should. I approach the county and am told he does not qualify and that the school he is attending through the county is enough. This leads me to ultimately hire and attorney and start a lawsuit to get the county to pay. By the end of the second year just before he is to leave preschool and enter kindergarten we settle with the county. They agree to a lump sum for back payment of treatment and to pay for treatment until he enters kindergarten. Because when he enters kindergarten he is no longer their responsibility but now that of the school district. This helps us financially a little. The lump some does not cover all the accrued debt but allows us to pay a lot of it down and covers a few months of future therapy.
In the fall of 2009 Charlie enters kindergarten in our public school system. He is placed in an Autistic Support Classroom that is about 20 minutes away from our home. He is unable to attend our "home school" or the one he would attend according to where we live, because they do not have an Autistic Support Classroom. I don't like this but understand. I am disappointed that he is not in the same school with some of the kids in our neighborhood who know him and ultimately won't be in the same school as his younger sisters when they enter school.
I immediately begin pushing for him to be taught by the ABA/VB techniques that I believe are working at home. The school assures me that the teachers are trained this way and he will be taught appropriately. I, being who I am, become very involved at the school so that I can keep an eye on things. I quickly notice that the teachers and therapists are not trained as I was told and I begin to complain, and complain, and complain. The school promises changes but ultimately I see none. I will avoid the details but Charlie is once again miserable, not learning at school, and I am forced to begin a lawsuit for the second time because I am again paying $2000-$3000 a month to supplement his education at home, in addition to the biomedical treatment that we are also doing.
The summer following kindergarten we begin looking at alternative schools for Charlie, as we believe the public school system is not providing what he needs. Mainly, one who teaches in the ABA method. We tour several schools in the area and one in particular that is over an hour away because it is supposed to be the best. At each school I feel sick. The schools are not geared to teach Autistic children to improve but to get by. I get the impression they are warehoused and fear he would not be treated with respect at these schools. The icing on the cake came when we visited "the best school." As we were on the tour a teenager was walking down the hallway toward us. Our guide stopped this young man and proudly asked him to say hi to Mr. & Mrs. DiMichele. This handsome man stopped, but his hands on is legs, and robotically stated that his name was John, he was 17 years old, he worked at the library 3 days a week. Our guide verbally praised him and he continued on his way. I almost choked. When we were out of earshot of our guide I turned to Kevin and stated that there was no way Charlie was going to any of these schools. They are training robots not educating special needs children. He agreed.
Now what do we do? I am terrified. I am determined to raise a happy child to be a independent young man, not a robot. I don't know what to do. Reluctantly, because I have no alternative, I put Charlie back in the public school for first grade while I try to figure something out. Things are the same at school. At home we continue to have our private ABA therapist come but we are now out of money to pay for her. Reluctantly, I stop the private therapist and manage to get one from the Wrap-Around services he now qualifies for.
The new ABA therapist comes to our home and she is not trained in ABA/VB but is willing to learn. Wrap Around assigns a BSC to come once a week and teach her how to do this therapy with Charlie. Seriously, they send someone who had no idea what she was doing to help me son alter the course of his life... and they felt this was appropriate. To me it is like sending in someone to do heart surgery who has no experience but once a week someone will come to see if they are doing it correctly. Umm, the person would be dead. In my opinion, my son's future is just as delicate as heart surgery. This was unacceptable but until I figure out the next step this is all I have. So now Charlie has a terrible school environment and an inexperienced home therapist. Great.....
Around the same time I hire a new speech therapist to come to my home because I feel the one at school is not doing a good job. After we get to know each other over the next month or two and she learns about his current education situation she mentions something to me called Son-Rise. She says she has worked with two other families who have done Son-Rise and she sees remarkable changes in the children. She suggests I look it up.
I spend the next several nights on the computer reading and learning about Son-Rise and I am impressed. It is now October 2010 and they have a Start-Up class in the beginning of December. After about a week of reading I sign up to attend the class. I figure the best way to know if this is something I am really interested in is to go and learn about it properly so I can make a decision.
December comes and it is the Sunday I need to leave to make the 5 hour drive to The Option Institute in Massachusetts for my week long class. Kevin takes the week off to take care of the kids. I am a nervous wreck. I am going to some random campus where I know no one to learn about a treatment program that in the 7 years we have been researching everything possible about Autism, I had never heard of. To top it off I had never been away from my kids for a whole week. Of course, they were in good hands with Daddy but I didn't know if I could emotionally handle it.
I drive up right into a snow storm so it takes me forever. I get there late, find my room in the dorm and meet my roommate. She is very nice and we talk a bit about our sons before going to bed. The next morning myself, and 80 or so other parents start our first day of class. During the morning session I am beginning to like what I am hearing. They are speaking of a program based on love and acceptance not of pushing our children to conform but to allow them to get to where they need to be on their terms.
The days go by and I begin to LOVE this place. Everything I am learning and the children they are describing this works for is Charlie. It is like they are describing my little angel to a tee and teaching me how to help him. I am sold. Additionally, I am meeting other parents who get me. Let me backstep and say, I have some of the most wonderful friends and the most wonderful and supportive family anyone could ask to have. They have listened to me and reached out to me during the most difficult times during my journey with Charlie's Autism. But the truth is, they don't get it. No matter how hard they try, and I know they do, it is not possible to "get it." The parents I am spending time with at the Option Institute GET IT. It is so cathartic. Every night the parents who are in my house with me and myself sit up and talk, laugh and cry into the wee hours of the night. We are mothers and fathers on the same path with the same fears and the same goals.
By the end of the week I feel energized, uplifted, and motivated. I now have a way to help me son and I believe 1000% it will work. I have called Kevin each night of the week I am away babbling how this is the way to bring Charlie into our world. He will not become one of those robots but he can become a happy and adjusted person. Friday comes and I actually don't want to leave this wonderful place and my wonderful new set of friends. I have bonded with these people like I never have with anyone else since Autism came into our family. But on the other hand, I can't wait to see my family and get started on this new phase our our lives.
I get home Friday night and that Saturday begin tearing apart his bedroom to make it into his playroom. The Son-Rise program is a home based program ( he will eventually leave the public school system) that suggests you work with your child in his own playroom to eliminate the distractions that have hindered development in the past. (you can learn more about the specifics of Son-Rise and Autism on their own pages on this website). By Sunday night I have all is furniture except the bed out of his room. All his clothes in the closet, shelves on the wall as Son-Rise suggests, for his toys and we are ready to go.
He goes to school Monday and after school when his therapist comes I say we are no longer doing ABA, as I now believe it is the worst treatment out there, and we will be doing Son-Rise. She says ok and I begin training her in the Son-Rise method. She takes to it like a fish to water. In a matter of weeks we see improvements in his eye contact, speech and engagement. Weeks. I was right, this is the way.
I begin the process with the school district of homeschooling and on March 21, 2011 he is home full time doing Son-Rise. His awesome wrap around therapist, myself, family, friends and volunteers spend each day with him in two hour shifts doing Son-Rise with him in his playroom. Improvements are happening, slowly, but they are happening but the best thing is that he is HAPPY!!! He is no longer miserable because he is overstimulated, confused, and frustrated. But happy because his opinions are valued, his choices of activities are not taken away from him, and he feels empowered. If he makes no other improvements, which I don't believe will be the case, his happiness is enough for me!
Charlie will continue on this course for the foreseeable future. For the first time, I know give myself permission to dream of a bright future for him. I no longer dread him growing up to become a burden to his sisters but dream of him having his own future. Maybe even recover from Autism. It happens, children do recover. I have met some. But even if he doesn't recover he will greatly improve with Son-Rise, that I am confident of.
It took all those failures for us to find Son-Rise. So I don't feel any of what we did was a waste but part of the journey. I will never stop researching for ways to help him and doing whatever I must for him but I believe we have found it. We are committed to this journey 100%, not just for him but for our whole family.