Back to School

Isabella heads back to school next Monday and it won't be in our living room as it has been in the last year. She will be attending a charter school for children with an autism diagnosis and I am both extremely excited and extremely stressed out and anxious. While I always hoped she would go to the best school, I never imagined in a million years it would be the best school for autism. I know I should revel more in the fact that she is so excited; she knows no difference between typical or atypical, but I am still a little sad. I feel like I am partly grieving for the typical first grade year that her cousins and friends will have or already had. We will worry not about school plays or team sports, but focus instead on speech and occupational therapy and individualized behavior plans.

So, why then are we doing it? Why have we decided to send her to an atypical school where we wait for the unknown instead of keeping her at home where she was doing relatively well? The answer is quite complex, really. Homeschooling is a challenge even for a typically developing child, but when you have a daughter who has very specialized learning needs and I am not a trained teacher, it poses obstacles that are hard to overcome. Not to mention therapy is extremely expensive and when I quit my job to care for Isabella (and Madison) I left behind 65K a year, paid insurance,401k and profit sharing. This school environment provides individual therapy 5 days a week. That type of treatment in private atmosphere would cost us more than 500 dollars a week, and that is being moderate.

The other reason is to have her exposed to other children; to learn how to appropriately behave and socialize with children her own age while in a learning or structured environment, as well as at play. It is easy to put a child with autism on a playground where she can focus on a swing and slide over and over again. Yes, she is with children, and yes, they are playing. But, if you watch closely you will notice there is no interaction. You could remove all the people on the playground and it would not impact the type or direction of play in which she is engaged. She WANTS friends, don't get me wrong, she just doesn't quite know how to do it; she is socially awkward, albeit much better than a year ago. The two of us recently took the train to Jacksonville. Trains are a love of Isabella's and this was a gift from Grandma and Grandpa. While on the train we talked about how exciting it was and I was taking pictures so that she could show all of her friends. She quickly replied, "What friends?" How gut wrenching and painfully eye-opening. Hopefully, she will soon develop new friends with this school. I am excited for her that she will develop some relationships outside of our home.

The last reason will seem selfish to some and quite frankly it is to some degree. But, the harsh reality is that I need a break from her. And, she needs a break from me. I would be lying if I said this isn't the hardest job in the world - to be patient and understanding of a six-year old girl who should be capable, who I want desperately to be capable, but isn't. Being high-functioning means that her capability to learn and intelligence are normal. It doesn't mean that she is any less challenged than a low-functioning child. There is a huge misperception there. She is mild on the spectrum and she is only this way because of God's blessing, plus all the extremely hard work that our entire family commits to on a daily basis, including her. And, it is hard. Her expressive and receptive language delays complicate communication. Social cues are missed with her and sensory integration compounds her problematic behavior. She is constantly being redirected and appropriated for her actions and largely disallowed to "misbehave" because she must learn "appropriate" behavior which most of us inherently know. Rare are the instances where she can "just be a kid," because to her it would involve stimming or stacking and those behaviors are largely considered to be "weird" by other people. And, I am always correcting her, often shouting, saying the same things over and over again and they are never processed. It is difficult for her to initiate play by herself and she often needs direction. She doesn't engage in imaginary play and she obsesses on things that I try to discourage. It is so tiring, so emotionally and physically draining. I love my daughter more than life itself, but there are times when I just need to be away from her. And, I know that she needs a break from me.

Nick just called to tell me he was on his way home - the last meeting for parent before school starts. He met her teacher (we will meet her on Friday) and he sounds excited, so that helps wash away some of my insecurities. She will do great, I know it. I think I underestimate her a little. But, I am her mommy and her protector and it is my sole responsibility to make sure she succeeds and I often feel like I am doing everything wrong. Will she hate me for making her go to an "autism school." Will this be the best thing that has ever happened to her? Only time will tell, and by this time next week we will be even closer to answering that question.

Walk Now for Autism Speaks Altamonte Springs

As some of you are already aware, I am a team captain and participant of the 2010 Walk Now for Autism Speaks event in Altamonte on November 13. I am walking for my daughter, Isabella. Ironically, this date will mark the one year anniversary of her autism diagnosis. I want to thank those of you who have donated and/or joined my team to walk and raise money. I am ramping up my campaign as the event draws near and if you are not in a position to donate or walk, I ask that you pass this on to your personal network - awareness is my ultimate goal.

Today, I took Isabella to her pediatrician to review some recent labs - a visit unrelated to autism, or so it appears. Her new pediatrician, a super nice guy, always is so amazed with how well she behaves and comments frequently saying "she obviously is high-functioning." Yes, she is. A year ago he may not have been so inclined to say that, but I digress. As he was typing up the notes for our referral to a specialist, he told me that he is including her history of Autism Spectrum Disorder but he is "making a note that she is high-functioning so they don't freak out." I was floored by his assumption that his esteemed colleague of a medical profession would be alarmed that a potential patient would have autism. And, I told him as such. He said that patients with autism take more time, and they might say, "oh, thanks for sending them to me." I told him how unfortunate I thought it was the medical profession felt that way and they should be more accepting considering that 1 IN 150 CHILDREN ARE DIAGNOSED WITH AUTISM. I continued to tell him that kids with autism are good kids. And, then it occurred to me how very unaware people are of that scary little word AUTISM including our front line of defense, pediatricians. Okay, here come the stats.

More children will be diagnosed with autism this year than AIDS, DIABETES and CANCER COMBINED.
1 in 150 children are diagnosed with autism
1 in 94 boys are on the spectrum
A new case is diagnosed almost every 20 minutes
Autism is the fast growing serious developmental disability in the U.S.
Autism research receives less than 5% of research funding than most other prevalent childhood diseases
There is no medical detection for autism and there is NO CURE
The estimated cost for families for a child with autism is more than $70,000 per year, most of which insurance does not cover

IT IS TIME TO SPREAD THE WORD! Here is the link to MY DONATION PAGE. From here, you can make a donation or join my team to walk and raise money for awareness as well. By participating in this event, you are helping to change the future for all who struggle with autism including my daughter, Isabella. By walking, you are getting us one step closer to finding what causes autism, how to prevent and treat it, and ultimately a cure so no family ever hears those words again. Until then, we walk to find answers and raise awareness about the devastating toll that autism has had on families like ours.

I need you to help make tomorrow be about dance lessons, school lunches and first words rather than therapy, doctor appointments and despair. Together, we will find the missing pieces.

A Letter of Honesty to My Daughter for World Autism Awareness Month

My Precious Isabella~

Autism. An unwelcome little word to which I never paid any mind. In my naivety, I pictured a child rocking and humming in the corner – not speaking, not smiling – and certainly not you, my sweet baby girl. But, in my search for answers as you continued to slip away from me, that dirty word continued to rear its ugly head until it tattooed its name on your beautiful face on November 14, 2009:  “Your daughter has classic autism. She is milder on the spectrum, and certainly high-functioning, but she does have autism.” And, so began the first day of the rest of our lives.

I want to tell you I am sorry. I am so, so, sorry. God gave me a responsibility to protect you the day you were born; He gave me an intuition to trust on your behalf. And, I failed. I watched you struggle. I did nothing but tell myself you were fine, that it was just a phase. Forgive me for listening to the doctors who didn't love you, the teachers who didn't nurture you, for letting my denial talk me out of helping you. But, know I didn't and will NEVER give up on you.

Eight months ago, so many things were wrong. You stared through me, you didn't hear your name, you hid under tables and you often didn't speak. You stacked and sorted and lined up your toys. You rocked, you spun, you rolled. You felt no pain, you were self-abusive, you would make yourself bleed. You couldn't ask for help, you laughed when we were upset with you and you couldn't make it to the potty. You couldn't be in a room by yourself, you were terrified by mirrors and you couldn't have anything out of place. You never slept. We would find you on the foyer tile in the mornings, on the bottom of the stairs. I didn't understand you. You were sad. You were so alone. I was broken-hearted.

I read, I researched, I PRAYED. I cried, I sobbed, I PRAYED some more. I took you to therapists, psychologists, neurologists. I sobbed, I cried, I read, I researched, I PRAYED. And, then I took ACTION. I became your teacher, your advocate, your nutritionist, your doctor, your unconditionally loving MOMMY.

Today, you are a different child. You smile all the time. You giggle infectiously. You listen for your name, you sit at the table, and you talk incessantly. You ask questions. Your literal mind amazes me. Your ability to see in patterns is phenomenal. You have a sweetness about you that can never be tarnished. You attempt to pretend-play, even if it is imagining that our house is in traffic. You hug, you love, you are empathetic. You haven't had a day or night accident in almost 2 months. You play by yourself, you sing songs, you answer questions, you SLEEP. I am starting to understand you, I can see that you are happy, and you will never, EVER be alone again.

I want to tell you I love you. I can't stretch my arms wide enough to show how much I love you. I want to tell you how proud I am of you. I want to tell you that the day that I was given a name to the thief that was stealing your heart, your words, your emotions, your sleep, your life - I committed myself to helping you erase it from your vocabulary. Not just make it easier to say, but destroy it. I will falter, and I will make mistakes, I will get frustrated. I will cry and I will get upset, and there will be days where I just won't understand. Our journey is far from over. But, if you have autism, I have autism. Me and you, best friends, are doing this together. I will NEVER fail you again.

Love,
Mommy

Yes, She Has Autism.

In a video I watched recently about two young autistic adults in a relationship (http://www.autismsupportnetwork.com/news/video-living-loving-autism-443201), a father tells how it is often harder in some respects for high-functioning autistic people opposed to those more severe on the spectrum because “...they are so close to 'there', yet not quite.” I thought of my daughter, Isabella. Although her autism is there everyday, there are many moments when her behavior and her actions are the same of a typically developing, near six-year old girl. It is those fleeting moments that elude people to think that she just is poorly behaved, or that I am a bad parent.
I was recently at the local health food store trying to find some supplements for myself, when a very nice member of their staff offered to help me. I was with both of my children and I was thankful for the offer. I explained to him that I can't have gluten in my supplements and after a while of searching with no luck, he asked me if I had celiac disease. I told him that I don't eat anything with gluten or casein because my daughter has autism and she can't eat those things. Technically, I could take the supplements with gluten, but I don't because I want to be feeling as much as what she feels. He looked at me, puzzled, and says “Who? This daughter?” referring to Isabella standing next to me. I replied yes, and with his brow furrowed he questions, “Really?” No, I am making it up. Of course, I didn't say that, but I was a little perturbed, although I don't think it was visible. After learning this information, he promptly said, “Well, let me know if you need help with anything else.” And, with that, he left.
I guess I should have been happy with his conclusion. To him, my daughter wasn't autistic and that is what we want, right? But, it irritated me that he became an instant professional on autism while spending just 3 minutes with me and my girls. And, this is what that father in the video was referring to, I think. What these people don't see are the 45 minute sensory overload sessions of feeling page after page of different books to find the softest one. They don't see your child hiding under the table when her therapist talks about emotions. They don't see my 5 and half year old having daytime accidents because they can't feel the sensation to use the bathroom. Almost there, but not quite. Maybe I was just exhausted that day, and his observation caught me off guard. Emotions tend to run high when you are in a grocery store or other stimulating environment.
I don't want autism to define her, don't get me wrong, and I am so thrilled with her accomplishments. It is because of her very restricted diet, her plethora of supplements and her intense therapy that she is often able to conceal her diagnosis. Some parents might say that is what they want – for people to not see that their child has autism. I feel that way too, but I am not ashamed of it. And, while I am hopeful that she will lead a relatively normal life, it is unrealistic to say she will not experience these challenges to some degree for the rest of her life.

Do You See What I See? A glimpse into the literal mind of my autistic daughter.

For those of you who don't know much about autism, it is a spectrum disorder. There are varying degrees of the way it affects each person who is diagnosed with this disorder. My daughter is mild on the spectrum and high-functioning, meaning she has normal intelligence. Those affected with autism are very literal in the way they interpret things; jokes and puns are often missed and the most basic of abstract concepts like before and after are difficult to grasp. While this is only a very minute glimpse into the many challenges that autistic people must overcome, it is necessary for me to preface the following peak at Isabella's interpretation of things I say to her.

Isabella is incessant; another part of autism that requires a great deal of patience, but I digress. Things that are inherently learned by social interaction for neuro-typically developing children requires a great deal of repetition to become a learned behavior by autistic children. For example, Isabella adores our German Shepherd mix, BeeJay. He is such a gently dog, and from the moment we brought Isabella home from the hospital, he has been her best friend. She tugs on him, she runs with him, she talks to him – they are buddies. However, in the past month or so, she has begun to terrorize him by pulling his tail while he is sleeping, chasing him with baby doll strollers, and cornering him behind furniture. He is visibly scared, but Isabella often can't read social cues (especially in a dog) and she just laughs. I must tell her at least a dozen times a day that it is not nice to be mean to the dog, he is scared, and to leave him alone. For most children, they get that concept and after a few times of pushing the limit with their parents, they finally give in and realize the punishment is not worth it. This is not the case with Isabella.

“If I see you doing that again,[insert disciplinary action].” I often start my reaction to her behavior to the dog, as I do with most problem behaviors, with these words. It is subconscious and to me it implies very basically, stop doing the behavior or you will get in trouble. Most recently, I told her to leave the dog alone, and not five seconds later she was doing it again, only it was behind the kitchen counter where I couldn't see her. Come to think of it, I recall she hides and looks to see if I am coming while she pesters the dog quite a bit. So, I asked her, “Why are you bothering the dog? I just told you to leave him alone.” Her response was very matter of fact, “But, you can't see me.” My first reaction is that she is being sneaky and I am slightly irritated, but then it dawns on me she has only done what I told her to do. “If I see you doing that again...” And, I couldn't see her, so therefore, to her it was okay to keep doing it.

The concept of death and going to heaven or somewhere else when you die is also extremely difficult for her to comprehend. That is difficult to comprehend for a lot of people, but for most of us we understand the idea of Heaven and we have faith to support our belief. My maternal grandmother passed away thirteen years ago, and she was in love with the moon. Isabella developed that same passion for the moon at a very young age, so I have always told her that when she looks at the moon, Great Grandma is looking down at you because she lives with Jesus and they live in Heaven. Explaining Heaven to a young child is very difficult, so this was my way of conveying that to her and I assume that is what she understood.

Recently, my husband was speaking to his grandmother, Isabella's great-grandma. Isabella can hear her voice through the phone, and she is excited; she knows who is on the line. “Is that Great-Grandma?” she asked full of giggles. I tell her yes, and Isabella wants to talk with her. After her conversation with Great Grandma, we tell her she is going to visit Great-Grandma and her excitement grows higher and she says, “We are going to the moon?” Another “A-ha!” moment comes over me, and I explain to her that we are going to New York to visit her other Great Grandma; Great Grandma that lives on the moon is in heaven and she lives with Jesus. Isabella asks, “She died?” Yes, she did, honey. And with that, I think the conversation is over.

Fast forward a week and Isabella and I are discussing George Washington, the topic of discussion for homeschool on Presidents day. I explain he was our first president, he lived a long time ago, and he is on the quarter, so on and so forth. Isabella asks if he died. (She talks about dying a lot, for some reason) Isabella, however, wants to see George Washington (she also asks if he has legs and if he eats food) and I explain that he lives with Jesus. Fast forward again, and now we are discussing President Obama, our current president who lives in WASHINGTON. “Maybe we can go there one day,” she says. I say sure, and she says “We can go to New York.” If you have made the connection, she thinks that George Washington lives in New York because he died and we told her that we are seeing Great-Grandma in New York whom she thinks has died and lives on the moon. So, therefore, she has concluded that people who die go to New York.

In that instant, I realized what a unique way she has at looking at the world. An innocent, no-nonsense, literal translation of everything around her. And, it also dawned on me that I am still using the standard rules of teaching and discipline with my autistic daughter, and those rules do not apply. Not only must she learn things by repetition, so must I. Repeatedly learn to view the world literally and for a left-brained, sarcastic individual, it is a difficult task.

Most days I curse autism and the day-to-day robbing it does of my child's dreams. But, on these days when I have figured out something so very unique to my daughter, I embrace it. She is so sweet; so innocent and what she views with her eyes are opening mine, more and more each day. God, grant me the serenity and patience to accept her autism on more days so that I can help her grow and flourish as You meant her to be.