Every day we live with the direct effects of autism. The challenges are great and require a constant devotion from each family member, with some days requiring more energy than others. Brenna has blessed us with so many wonderful moments but has changed the way we are able to approach events that others are able to do on a regular basis. Autism affects us as a family mentally, physically, emotional and financially. .
Autism on the Seas is a non-profit company that allows families like ours to experience a vacation that at one time we would have imagined to be impossible. They arrange specific special needs accommodations with the cruise lines and they provide professionally qualified staff to assist us with expedited port check-in, meal assistance, pool time supervision, beach excursions, respite (time for Brenna to be well cared for while the rest of the family can do other things), and many other perks and assistance. Autism on the Seas also provides pre-cruise professional consultation and valuable resources, including connecting with other families for support.
All that and most important they offer Disney cruises. Our gal loves Mickey Mouse Clubhouse nearly as much as we love her. My dream is to see her face light up, her body tense with excitement and then explode into happy stimmy dancing. I can almost hear her happy moans and her chanting "Mickey! Micky!" as she dances around in her special wonderfully unique way. Why not go to Disney World? For all the reasons above. That and she is also very fascinated with ships, the ocean, and it's sea life.
More about Brenna. She is 7 years old. She is on the more severe side of the spectrum with immense needs. She is a funny and clever girl who enjoys music, dance, imaginative play and collecting every blanket, pillow, towel, wash cloth in the house to stack on the sofa and then burrow in with Mickey Mouse Clubhouse dolls and the show playing loudly on her Ipad. She was diagnosed at 3 but I knew sooner. She stopped talking as often around 18 m. She would sing, say very simple phrases like "go bye bye" and most important "I love you." I didn't hear the words again from her until she was 5 and sadly now again I cant prompt her to say them...I feel them though every moment of every day. Pecs and and other forms of communication have been rough or non existent. She uses very crude functional language with a lot of prompting, Often just repeating what she thinks we want to hear. I have never had a conversation with my daughter that was two sided. But, I talk to her all day and often get a spark, She hears me. I am in her world. She is mine.
It is now just us and her support pup at home. I am divorced and we live on meager funds. I made the tough decision to quit working because Brenna was harming herself and others. With me home with her and the start of a new school recently she has decreased the self harm and violence drastically. That and she is finally receiving an academic education. She was just kinda dealt with and I was told I was wasting my time trying to teach her writing and reading. We have a very long road ahead but I wont give up and I make it fun for her.
She has a lot of the piggy back disorders that follow Autism. Some gut issues, severe skin rashes, some seizure activity, sensory processing disorder, low muscle tone, speech apraxia (non verbal), autism related pica ( a strong urge to chew non food items), and severe delays across the board. Her only friend is her emotional support dog as she has the social level of a young toddler, cognitive skills are her highest level at about 3 years old meaning she can succeed at school with the right tools. I think the largest challenge for me as her primary caretaker is her lack of body awareness and safety. I worry all the time. I have imagined the worse not unlike any other mother but the worse is more likely to happen to kids like mine. She also very sensory driven needing a lot of input and deep pressure without it her world falls apart. Sh has very poor impulse control and trips often due to poor body awareness. Potty training has not been successful so far. *fingers crossed*
Why we could never afford this trip ourselves.
As mentioned I am a divorced mother. Father pays very minimal support ( not enough to feed a child for a week) and she gets SSI. We spend a lot of time in food pantry lines. She just started a new school where things have been calmer for but in the 2 months she has attended I have already had to pick her up or go to school to calm her down 7 times. Her father spends 2 or less nights with her a month. I don't sleep well and have a few health problems myself. I am on the Autism spectrum. I had speech apraxia as a child but was not diagnosed with autism until adulthood. The diagnosis came about after I started to have stiff feet and calves, so, stiff I feel and severely sprained my ankle. My PT made the assumption I had Autism and I was like "I think I do!" This sometimes happens when persons on the spectrum walk on their toes as I did. I then had some memory trouble like forgetting my address and phone number. I had a brain MRI and they discovered the sucal (brain folds) weren't that "fluffy" ( the neurologist's word) . This happens in aging , stroke, or with severe trauma. I am only 37. This puts me high risk for early dementia. I worry I wont be able to take care of my baby a lot sooner than I normally would age. I want to soak up every moment of happiness with her and teach her all i can IN CASE that happens. It is not a guarantee. and I do not want to mislead. I just have a much higher risk than other healthy adults, After an evaluation the Neurologist gave the official Autism diagnosis. It felt weird being an autism mom with autism but it also makes perfect sense and explains my life and why I never fit. The neurologist also sent me to a neuro-psychologist where they did an evaluation on my memory and intelligence, I have no intellectual disability and even scored above average in creative areas. But, I do need supports to retain information. The memory issues can come from depression, anxiety disorder and PTSD from child sexual abuse, I still struggle with memory issues like sending pizzas to a reverse address other than my own. It is embarrassing but I cope. I also managed Hashimotos thyritous which has put my thyroid low so I gained a lot of weigh quickly and have low energy while Brenna has immensely high energy. We have our system that works for us but it can be very taxing.
Our family includes the best big sister ever. Brenna's sister Taylor will be joining us, She recently moved out and is hard at work becoming management at 18 and still coming over to help out.. She struggles with Anxiety and Depression. She and Brenna are very close. Being 12 years apart means Taylor has a caretaker type of relationship. Don't get me wrong I have always been the parent and main caretaker. I have been very careful not to cross lines that should not be. Taylor is big sis and I am mom. But, this doesn't mean Taylor hasn't changed a pull up or handled a meltdown. She wont be fond of me saying this but she has made sacrifices for her sister's needs and behaviors. It was hard to invite friends over with a big kid in diapers, making messes, being very loud, and often violent. She has never minded the sacrifice but as her mother I tried my best to give her what she deserves as much as I give Brenna what she deserves. Taylor has asked to be her sister's guardian if anything happens to me. It both concerns me (because I want to help make that easier for the both of them to lead full lives and the thought of not being there for them is horrifying) and brings me comfort (because I know Taylor adores her and will honer my wishes and respect her sister.)
Asking for help is not easy but I know this will make Brenna a very happy girl thus making big sis and I very happy in return. We are interested in a short Disney cruise so she can meet the characters. You will be helping make a little girl that works very hard in school and therapy happy. For that I will be forever grateful.
Pictured: My daughters Brenna and Taylor