Autism acceptance with ABA

                 Emily and Michelle

      After a bicycle accident last summer   left her in a cast  and stitches, Michelle came to visit and bring social stories. 

When Emily was diagnosed at the age of three, I was completely overwhelmed with the recommendations that were given to me. I immediately started reading any book on autism I could find. One of the books I relied on was The Autism Sourcebook. I highlighted as I read and made notes. There were so many costly treatments that were thought to help with autism. Hyperbaric oxygen chambers, diets, listening therapy, play therapy, and shots just to name a few. However the one recommendation that was scientifically proven was ABA therapy. A type of behavior intervention specifically targeting and teaching those on the spectrum. The recommendation was 40 hours a week of intensive therapy. At $40-50 an hour with no insurance that would cover the cost, that wasn't an option. 

Emily was blessed with 6 hours a week of ABA for several years. Michelle, her therapist, was a God send and she quickly became Emily's saving grace. She came into our home and worked with Emily. She went with me to IEP meetings. She took Emily on outings to work on meltdowns and tantrums. She purposely put Emily into situations that would cause a meltdown so that she could teach her how to handle herself in a more appropriate manner. These were things I couldn't do with three kids. I was in survival mode and getting through the day was what we did. Michelle accepted every challenge Emily gave her and she accepted every request from me. She made social stories and picture schedules for Emily. She worked on academic goals as well as behavior. The 6 hours a week eventually became 4 hours a week, then 2 hours a week and now after 8 years, I am struggling to provide 4 hours a month of ABA for Emily. But without a doubt, the early intervention she received along with a caring and accepting therapist is the one thing I know for certain has helped Emily more than anything. 

Finding someone who supports you and your child is essential in any working relationship. Because of the help Michelle has given Emily, I am able to accept the challenges of raising a child with autism more easily. I have the tools and a readily available support person to call when the next "crisis" arises. She accepts Emily as she is and has not once in 8 years made me feel like I wasn't doing enough. She also accepts that sometimes my house isn't going to be spotless and there's going to be dishes in the sink or clothes to be folded on the couch. She's currently working with Emily on folding clothes as a new life skill. Just another example of why I love our ABA therapist so much. 

Autism acceptance at Publix

                Emily and Joey

I've been shopping at Publix for several years. The main reason is because I truly save more money there than anywhere else. But the thing that makes me want to continue to shop there is their support and encouragement of individuals with disabilities. The Publix at the corner or Valleydale Road and Caldwell Mill Road employees those with special needs. 

Over the years we have gotten to know one of the bag boys. His name is Joey, and Emily just adores him. He always greets Emily with a hug and calls her by name. If he doesn't see her first, she runs to him squealing his name. Joey is closer to my age but there are no barriers between them. He always has a friendly smile or wave to everyone. He loves to make conversations and I know that my trip to Publix is not complete if I don't get to see Joey. He just recently celebrated 10 years with Publix. An outstanding achievement for anyone in the workforce, but for someone like Joey to be given such an opportunity is amazing. The acceptance he gets from customers as well as his co workers is something I watch closely. As the mother of a child with autism, I hope that Emily will mature and grow enough to have those opportunities and will be accepted just as Joey has been. 

Because Publix has a working relationship with individuals with disabilities, it makes shopping there with Emily so much better. I'm able to work on social skills and independent thinking skills with her while we shop. It's been one year since she was able to independently go ask for her free cookie from the bakery. A task we worked on for over a year before that. She now feels so comfortable in the store I don't even go to the counter with her. She is completely independent and I know that the patience, kindness and acceptance from the employees at Publix has made all the difference in the world. 

             Emily asking for a cookie

Publix is another wonderful store that is accepting of individuals with special needs. Their motto is "Love to shop here. Love to save here" and we sure do! 

Thanks for reading~

Jessica 

Autism Acceptance...Shell support

    Emily with Miss Wendy, Miss Laurie &

                         Miss Pattie    

I'm blogging about the Shell gas station at the corner of Cahaba Valley Road and I-65 south again. You can read my original post about this station under "True Colors Red" from last April. 

When you find a place that accepts your child, you become a frequent visitor. It feels safe, nonjudgmental and even a fun place to go. 

The employees and manager at this particular station embrace Emily. She walks in and they ask her how her day was at school. She will independently walk up to them and tell them about things that are coming up at school she's excited about. They are always attentive and encouraging. Just recently she told them she was going to the prom. Without missing a beat Miss Pattie told her under no circumstances was she to kiss a boy. They have fun with her and treat her as if she were no different than any other customer. Ok, well they do treat her differently. She gets pretty special treatment from them. They go over and beyond what customer service is. They come from behind the counter to give her hugs. They ask me questions about her and are genuinely interested. They make her feel accepted and loved. I have written corporate about this station and will be doing so again. Miss Donna, the manager, always has a hug for Emily and if I come in without her she asks me where their girl is. If I had one wish, it would be for acceptance like this. One store making a huge impact on the life of a child with autism and her mama. A shell station. Acceptance can happen anywhere, at any given time,  if there are people who just take a moment to listen and learn. 

Thanks for reading~

Jessica 

Autism Acceptance...God grant me the serenity

            Emily(age 3) with Ma Clark 

For as long as I can remember, my grandmother had The Serenity Prayer that my aunt cross stitched, hanging in her house. I would recite the prayer at a young age not fully knowing what it meant. When she passed away it was one of the items I was fortunate enough to get. It hangs above my bed. I still recite the prayer often and love seeing it as I climb into bed every night. 

Every day I question the decisions that I make regarding Emily. A person can get lost down a very dark road trying to find answers to questions that don't have a concrete answer. We are the cowardly lion needing courage. We are the scarecrow needing our brain for wisdom. But more than anything we need peace and serenity. This is my daily prayer among many others. It is a gentle reminder to accept those things I can't change. Autism acceptance. 

     

Thanks for reading~

Jessica 

 

Autism Acceptance Sibling Style

I can't imagine what it feels like for my oldest and youngest children to have a sister with autism. I know it's frustrating and embarrassing because those are the emotions they speak of the most. There are typical sibling arguments but most are one sided. There isn't much play time or interacting with Emily, because she prefers to be by herself. There are attempts made by all three but unless it's a facilitated effort on my part, Emily refuses to participate in any family activities. She's just along for the ride many times or makes her presence known by the occasional two or three word sentence. "Hey, Anna Grace" or "Hey Son". 

We don't leave Emily out. Anna Grace and Luke have both accepted that Emily is coming and more than likely will annoy them with the constant questions she asks me. There's also the acceptance that she will embarrass them at some point by her actions and reactions. There's also acceptance that we may have to leave in the middle of an outing if Emily becomes unmanageable. These are some of the things they know can happen having a sister with autism. They accept that but it doesn't make it any easier or fair for them many times. 

While there are often complaints that Emily is annoying or embarrassing, I think that's typical in any family. For sure more pronounced in ours but they handle it well. Regardless of how much having a sister with autism gets on their nerves there are moments that touch my heart. Moments where they are telling their friends about Emily and autism. Moments where they tell her she is doing a good job. The offer of a hand to hold when she's scared. The acceptance that she is different but they will always stand behind her. 

Thanks for reading~

Jessica 

Acceptance starts at home

Continuing my thoughts on Autism Acceptance Month, I will say again that acceptance starts at home. 

I can't expect anyone else to accept Emily's exceptionalities if I don't. As with all children, no one will love them more than their parents. However, when raising a special needs child there are a multitude of people that will come into their lives. Teachers, aides, occupational therapists, speech therapists, behavior therapists, just to list a few. These individuals are helping our children reach their full potential and with that comes expectations from us. The parents. 

I remember the early years when I thought Emily would be able to write perfectly after a few sessions of OT. I remember thinking if I could get a few more sessions of behavior therapy in, we wouldn't have any meltdowns or tantrums. I had so many expectations.

back then. I didn't fully accept Emily's diagnosis. I just knew she would be "typical" by the age of 5. It was a tough road and little progress was made anywhere. 

It took almost 8 years for me to accept Emily's future. But once I did, the changes that started to happen were nothing short of miraculous. The stress and worry became less for both Emily and myself. My expectations were different once I accepted she may never read or write past a kindergarten or first grade level. She has progressed more in the past 2 years than she ever has. People remark about her improvement every day and ask me how or why she is doing so well. The only thing that's changed is my attitude and way of thinking. Acceptance of what is and what may never be. Accepting that there are going to be set backs and roadblocks along the yellow brick road,

somewhere over the spectrum, but knowing that and finding ways around them has made a huge difference in our lives. 

Thanks for reading~

Jessica 

World Autism Acceptance Day

        Emily and Mary Ann giving "five"

Today is World Autism Awareness Day. I want to encourage acceptance of all individuals with autism. I also want acceptance for the parents who are raising those with special needs. 

As the mama of a child with autism, I feel connections with other special needs parents. We have an automatic bond. It's like being a member of a country club except the only swimming being done is to keep from sinking. There's no golf balls being hit because clubs can become weapons in our homes. There's no relaxing in our club. We are just in it for support. There is also no membership fees and automatic acceptance. It's a really cool club nobody wants to be in. 

My friend Mark, is a single dad raising a teenage daughter with severe autism. Emily and Mary Ann attended the same school for a year before Mary Ann transferred to Glenwood, a school specifically for autism. We are on spring break this week, so I offered to come over and sit with Mary Ann to give Mark a break so he could go to the grocery store. Yes that's a break. Emily was very excited to go to their house. While they are miles apart on the spectrum their similarities are what make us a club within a club. Both girls started their periods a week apart. We have both gotten some good laughs at each other going through that. Humor is the only way we survive sometimes. Humor and acceptance that we have to handle things differently. What works for one might not work for the other. Accepting that offer of help when needed. Acceptance into a cool club nobody wants to belong to, but making the most out of the membership. 

Thanks for reading~

Jessica 

Autism Acceptance Month

April is Autism Awareness month. I feel as though I spend so much time talking about Emily and how autism affects our life. I can't comprehend how anyone isn't "aware" that autism is growing at a startling rate and 1 in 68 are now affected. I believe when Emily was diagnosed almost 10 years ago the rate was 1 in 140. 

I don't know what causes autism. I don't get caught up in ways to "cure" Emily. I accept Emily for who she is and work around her needs. Acceptance starts at home. It's accepting every day will be a challenge and being prepared. It's accepting that public outings are so difficult and draining but necessary for the future of Emily and others like her. Acceptance is a friendly smile, an acknowledging hello or an engaging conversation from a stranger after my child wanders over and waves in their face and walks off in an attempt at being social. Acceptance also means letting others help when times are tough. Needing help, wanting help and being able to accept help is one of the more difficult challenges many autism parents face. We accept our children and their exceptionalities but find it almost impossible to accept help from others when we need it most. 

This month I will focus on Autism Acceptance. I have accepted the challenge of raising a special needs child and I want her to be accepted throughout her life. Kindness counts but acceptance is essential. 

Thanks for reading~

Jessica 

It is well with my soul

                    Emily riding Merlin

Yesterday, as I was responding to a post about the lack of services for adults with autism, the sense of frustration, fear, desperation and helplessness from other parents of kids on the spectrum hit me hard. Most times we are able to make light of such situations in an attempt to lessen our stress. But the worry is always there. The ever present fear of the future is overwhelming. 

We read articles about the struggles other parents are facing when their child becomes an adult. We block it out. We skim the surface. Knowing the inevitable is coming yet not having the knowledge, strength, courage and determination to do anything about it. Knowing the work that must be done and feeling an incredible amount of guilt we aren't doing more. 

"Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid". 

As I was reading comments from other parents yesterday, John 14:27 immediately came to mind along with my favorite hymn.

"When peace, like a river, attendeth my way,
When sorrows like sea billows roll; Whatever my lot, Thou hast taught me to say, It is well, it is well with my soul." 

This morning peace found me in the form of a rare 8 minutes of silence in the car instead of repeated questions. It found me watching my girl happy and at peace within herself riding a horse. Indeed it is well with my soul. 

Eight minutes of silence playing Luke's iPad 

Take the pills they said...

Often during my journey somewhere over the spectrum I get off the yellow brick road and find myself lacking a strong heart, courage and knowledge to stay the course. While looking for the wizard to show me the way, I put my faith in things that are seen. Time after time I am reminded that my plans are not HIS plans  and I am left finding humor in these instances. 

Since Emily was diagnosed with Autism at the age of 3, I have been consumed with the fear of puberty. Two weeks before Thanksgiving I was forced to face those fears and I was not prepared. How do you explain menstruation to a child like Emily? How could I teach her self help skills related to this when she just became independent with pooping? Thankfully it was just a light period and aside from her being proud to wear a pad and announcing it to everyone she met, it was tolerable. After much thought and speaking to her pediatrician we decided a continuous dose of birth control was best for her. She did not need the added stress of a period. I could not keep her home one week every month without facing regression at school and there was no way I could send her and ask the teachers to handle that. So she started on those magic little pills that were going to prevent anymore worry. 

Taking the pill was a challenge. She can't swallow pills, so every night I hid that tiny thing in a spoon full of cool whip or ice cream. Met with some resistance, spitting it out and even chewing, we stayed the course. There was not going to be a period because we were taking these pills. I was sure of it. Well, a week into the second month I went to give her a bath and low and behold there was blood. I was in denial. It couldn't be. It shouldn't be. Maybe if I ignored it then it would go away. She was teary and emotional after bath and wanted to go to bed at 6:15. So I put a pad in her panties and put her to bed. It was just a one time thing. She'd wake up in the morning and be fine and I'd send her to school. Because they said she wouldn't have a period on the pills. I was awakened the next morning by two pair of messy panties on the floor and my girl who kept saying, "It's ok baby. I know your tummy hurts. Mommy will rub it." Not only was there a period but she was in pain. In an effort to soothe her, I got her a milkshake from McDonald's. I took a picture of my precious girl to post for prayers and maybe to complain a little. After posting it and saying "Lord help us" I saw the Church sign behind her. Faith. It was at that moment I realized I had put my faith in those little pills when it should have been elsewhere. 

I smiled and the rest of the day was filled with things I found humorous...Pulling up to the drive thru and the lady asking if we wanted ketchup and Emily replying to her, "Hey! My pad hurts." No thanks lady. We have enough red today.

I am currently awaiting a return call from the pediatrician to determine if she can get the shot to cease menstruation. Believe when I say I am not putting my faith in a shot! 

Thanks for reading~

Jessica