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 Bear 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.
Most importantly our Brenna loves water. She is mostly nonverbal but scripts about the ocean and loves boats and sea creatures. She's a little redhead so we joke she's the opposite of Ariel. She has legs but wants fins!!
The past year has been very hard on everyone and it's no contest about who has had it worst. But, it's worth mentioning that special needs families have struggles most can't comprehend and then suddenly had less services and with a child who can't comprehend a pandemic she just suddenly had her world turned up side down and didn't see loved ones for months.
In this time we also had our car taken by threat of harm from my oldest child. I'm a single mom so it's me and my 2 girls. 3 young men car jacked my car leaving her on the dark street alone. They then destroyed the car in a police chase. It was all I had to show for an injury settlement where both my knees were crushed by my engine when a woman ran a red light in and hit us then we hit a pole. Brenna got a concussion and large contusion. I needed meniscus surgery and they couldn't repair so removed one and found a torn ACL and permanent damage to the actual bone and ligaments. I will need more surgery in the next few years. I wasn't able to walk for months then only with a walker for a year then a cane. I know can walk with no help for short periods but it takes its toll on me. I can't run or dance or play with my child like I used to. Then I struggled with skin cancer to top off the year. I am glad to report I'm cancer free as of last month. Treatment wasn't fun but I do consider myself very lucky.
I don't work but to do a few writing projects and things like doordash because Brenna has immense needs. Even in when she's able to be in a school setting I am called several times a week to come get her or bring this or the teacher had this or that concern to discuss. I lost 2 jobs for being in the ER with her for grand mal seizures. It's best she's my job. Though I don't look at her like she's a job and I'm paid in hugs and yes sometimes meltdowns.
We spend more time than one should in medical centers and getting gawked at for her stims and being in pull ups at her age. 5 days on the ocean with other people like us is a massive gift we could never imagine until we found this site. I am not asking for the full balance as I've been paying it slowly for months on my own. Any help would be immensely appreciated so I could shift some focus to other things she needs to live a quality life.
Other: Note Brenna is an 11 year old girl with tier 3 autism (meaning she is deeply disabled by it), immense intellectual disability, developmental delays (she's emotionally about 2 and tests at about 3 to 4 years old education wise), she has OCD, PTSD from the accident and then hospital after, sensory Processing disorder, epilepsy, ADHD, Non nutritional PICA, PANDAS, ODD, anxiety disorder, Rubinstein Taby Rey (type 2) disorder and severe speech apraxia. She's mostly nonverbal with very limited speech.
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