First, The Basics
Jess is 34-years-old, autistic, and blind. Her favorite topics of conversation include getting a new dog, her friend Keely, her Aunt Sue, and cousin Donna. Jess collects CD’s of children’s music, cards, coloring books, and has a small collection of used up disposable cameras that she refuses to get developed. Favorite health foods include chicken and rice, chicken tenders, chicken nuggets, chicken biscuits, pepperoni pizza, and hash brown potatoes. Jess has naturally curly hair that she would rather not ever comb, brush, or cut.
Jessica’s multiple disabilities stem from brain damage that occurred in-utero, and from hydrocephalus. In addition to autism and blindness, Jess also has minor fine motor and gross motor deficits.
THE PUBLIC SCHOOL JOURNEY
Jess was in public school from the time she was 4 years old through her 21st year. Individualized Education Programs (IEPs) were a way of life, and I attended a minimum of 40. Our family had strong support system that led to good information about advocacy and our Parents’ Rights. We knew how to go into an IEP empowered and prepared.
Our biggest hurdle was an ongoing lack of belief in her potential, most specifically her ability to learn to read and to learn to read Braille. I fought that fight until the bitter end.
SPECIAL EDUCATION
Jess was on the cutting edge of the development of many special education services. When she was two, her primary diagnosis was cortical blindness. At that time (1989), school systems had not been required to provide special education services for pre-schoolers. We informed the school system that she would be attending public school in two years were told that local families usually sent their blind children to the state school for the blind (3 hours away from our home.) Our prompt response was that she would be staying here and going to school in our local system. We started having meetings with local and state groups, State Representatives, wrote letters to the Governor, and got involved with existing early preschool educational initiatives such as “Five’s Too Late.”
PLACEMENT
From that point on, it was firsts. Her first year in school (4 years old) she had the first Teacher for the Visually Impaired that the school system had ever hired. When the school year started, so did the teachers’ own education to become a certified teacher of the visually impaired. That teacher lasted one year. At the beginning of the next school year, Jessica’s VI teacher was another untrained teacher that had to begin training to become certified, and ditto the next year.
JESS DIDN’T ‘FIT’ IN THE SPECIAL ED CLASSROOM
In Jessica’s second year of school, our county school system got its first ever special ed preschool class. Unfortunately, Jess didn’t have the opportunity to begin the year in that classroom. Apparently it wasn’t the right placement. I was told the students in that class had “greater needs”. So, for part of the year, she wasn’t in a classroom. She was just at a school, working with an untrained VI teacher, and having speech therapy.
SHE DIDN’T ‘FIT’ IN THE REGULAR ED CLASSROOM
The next school year, Jess didn’t fit into the typical kindergarten either. Her needs were too great. To be honest, she really didn’t fit in. Jess never did. Ever. Anywhere.
Early on, we questioned an autism diagnosis, but we were told by some education professionals, as well as medical professionals, that Jessica’s odd behaviors were “just because she’s blind.” It was a ridiculous statement. We had been around other blind children and surely this would be a huge insult to them. Jessica did not fit in with other blind children, and they avoided her as much as regular ed children did. Jess was unlike any other child we had ever seen.
JESS DIDN’T ‘FIT’ IN THE MOID CLASSROOM EITHER
Keep in mind that back then, for the most part, established programs for Autism did not exist within the school systems. Autism was not something people understood. If people even knew it existed, it was because of the movie Rain Man (1988).
When it was determined that Jess would not be in a typical Kindergarten class, she was then placed in a classroom for the “Moderate to Severely Intellectually Disabled,” a classroom setting that included a psychotic student who wore restraints most of the day.
The classroom teacher was a man in his last year before retirement – burned out and quite ‘old school’. One day, without reservation or any inkling of how offensive he was about to be, he said directly to me, “I don’t know why they try to teach these kids anything, they’re just retarded.”
Yeah, he said that ——— I was floored.
I complained to the Principal, and then to the Superintendent to no avail. Nothing was done. He was “too close to retirement,” I was told. There was no other classroom in the entire county for Jess to be in, and I refused to continue to have Jess spend her days in that classroom. Instead, she was resigned to spending her days floating around the school, here and there, doing different things with different people. Oh yeah, and getting VI services from an untrained VI teacher.
GETTING COMFORTABLE WITH IEP’S WAS A MISTAKE
Next year, Jess had a new teacher in the same classroom as the previous year. By that point, I felt I was getting the hang of IEPs, so I went alone (without a support system) for the first time ever.
What a Bad idea!
In the IEP, this new teacher promptly announced, looking directly into my eyes, that Jess would never learn to read. Jess was 7 years old! It was the first time, and only, time I ever cried in an IEP.
The teacher was so wrong, but it had already been decided and that meant they were not even going to try. Being without my support system, I felt so alone and completely ganged up on. I politely but openly disagreed with them. Apparently, I didn’t know anything because I was just the mom, not a ‘professional’. They informed me that they knew better than me and I just needed to accept it.
My heart was broken, but I never quit fighting to prove them wrong. They hadn’t given her a chance. In the previous three years, she had three different uncertified teachers for the visually impaired (i.e. they didn’t know how to teach Braille), and a teacher that thought his students didn’t need to learn anything because they were “just retarded”.
However, they continued to refuse to put working on learning to read into Jessica’s IEP until she was in high school.
FINALLY, AN AUTISM DIAGNOSIS
At the age of 7, Jess got her official diagnosis of Autism. We were able to change her primary disability to Autism. This had major implications for Jessica’s educational placement because it redefined her LRE (Least Restrictive Environment) in the context of the IDEA (Individuals with Disabilities Education Act).
We read as many books about Autism Spectrum Disorder that we could, did research, attended workshops, and went to a National Autism Conference. We even saw Temple Grandin give a speech at a conference. Jessica’s new diagnosis changed our approach to things at home and at school, and gave us new perspective.
FINALLY, AN AUTISM CLASSROOM, BUT GUESS WHAT…
Eventually one of the elementary schools in our county had a class for children with Autism Spectrum Disorder. However, we were told Jess was too old to be in that classroom, even though she was still in elementary school. Yeah, that again. Too young, too old, too normal, not normal enough.
The county middle schools didn’t have an autism class in place until the year after she finished middle school.
When she started high school, there was not an autism class there either. However, finally she was able to get into a blended classroom that worked well for her.
In her whole lifetime, Jess never had the opportunity to be in an autism class or program, or even ABA therapy. Even after aging out of high school and trying a day program, the placement was so inappropriate that we faced immediate problems which soon led to failure. This is why Jess at home and not in a program, and why I had to give up my career to be home and care for her.
PURPOSE
After having to quit my job, I felt such defeat and self-imposed shame. The reason I started blogging was to defend how hard I had tried throughout Jessica’s life to get her the best education, services, and training along with appropriate placement.
The purpose of my blog morphed into being a place to share our every day life experiences since aging out of public school. My goal is to help other families gain insight and awareness of what everyday life experience can be like when living with a dependent adult-child with special needs.
Most of all, I want to you to see that we face frequent challenges and frustrations, but share even more joy, entertainment, laughs and good times.
I love your videos. You are so good with her. How old were you when you had Jess? Was she your first child?
when is jessicas birthday
July 23
You can tell she has such a big sweet heart and it has to be a reflection of you and your partner. You’ve taught her more than any program could and it shows in every video! You ladies literally make me smile. “She just don’t need it”💜💚💛💙🧡💜💚💛💙🧡
Why does Jess face pat?I enjoy watching y’all so much!!
Thank you! Here’s a little video about face pats. https://youtu.be/6mmhYMuhNYc
I am so sorry to hear you went through this. I live in Minnesota and we have had special Ed in the schools for as long as I can remember and I am 63. I have worked with many autistic children from low to high autism and superhero’s, they all can do more than people think. We have an advocate program called Pacer. If you ever mention Pacer to the staff they will run to make your accommodations known and keep you happy. Stay strong and breathe. You’re doing fabulous.
I really love seeing the kind of life you all have with an ASD adult who is so loved and given a wonderful life full of love. I am a teacher who works with a number of very different students with ASD, one in particular who I am having a hard time making a positive connection with and I worry about his future as he has very troubling behaviours, and no desire or motivation to change. I need a dose of your love and patience for this child❤️
I enjoy watching Jess so much. I have a 6 yr old son,Jaxsen, who was diagnosed with ASD at the age of 5 and I’m finding that public schools doesn’t really help him that much to excel to his full potential. It is a daily fight….and exhausting! ?. Jaxsen is the highlight of my life everyday. He is filled with so much joy and happiness, most of the time, and he gives me kisses just like Jess gives you. It’s makes my heart happy to see other people’s journeys with kids with Autism. You have done a great job raising Jess and it shows in every video how intelligent and how far she has come! ❤️???
Thank you! The fight is so hard but the joy and happiness make it all worth it. ❤️
Where theres pain there is joy! Life is so precious and for those who have difficulties living it to the fullest deserve a chance! Jess is clearly a very lucky girl to have Val as her mother and really a best friend, to love her and guide her along the way .. such a beautiful relationship and your videos are amazing ? wish y’all the best in life thanx so much for sharing !
Thank you!
I so resonate and am encouraged by your vulnerable sharing of your life and Jess’s journey. My sons are neuro-typical (meaning they fit the standard definition of normal…whatever that is). However, my 17yo has suffered from severe mental/behavioral health challenges from the age of 12 onward. I’ve lost two jobs over a lack of empathy and flexibility as I advocated and cared for him. In one year he was hospitalized 9 times and they couldn’t understand why sometimes I got in a little late from having sat up with him all night to keep him from cutting too deep. I’ve been told that he’s a ‘good kid’ from a ‘good family’ and all we really needed to do was beat his *ss. Teachers didn’t believe us as much of his acting out was off school grounds. I actually had to convince a social worker, ER doc, ER attending, Psych Attending and the Head of the ER department that a kid who had taken a handful of pills and sliced his arms needed to be involuntarily sent to a psych. hospital. Talk about being ganged up on! Something people don’t understand is this is a lifetime commitment. Our kids will always need additional support, medication, therapies, patience and love. It’s a lifetime commitment on our part too. Thankfully I now can work from home and there is flexibility. However, I will always be his primary caregiver. He is in regular high school, taking two college classes and has been stable for several months. I cherish these times of peace as I know that times of chaos are part of the swing of his life and his unique brain. All of this is to say, thank you and you are not alone. There are many Mommas who are good ones and who care about you and yours.
I appreciate your transparency. I found your Facebook page recently and immediately fell in love with your family. Your posts bring me hope and always make my day a bit better. I have a son that is 29 and was diagnosed with being ADHD/ADD with mild Autism (another words, they weren’t sure exactly what his diagnosis was they just knew he didn’t fit the “normal” age group of children).. Our story is also long with many frustrations and feeling alone and often burnt out. He is currently still living with us after trying to be on his own 3 different times. He’s also been told he was retarted at school and would amount to nothing. He’s proving them all wrong. Most people can’t tell upon first meeting him that he is on the spectrum. He’s finished a trade school which was very difficult for him but he did it. Your posts help to keep me inspired and your love is felt as I watch how you all go about working together to uplift and support each other. ?Thanks for sharing your story.
Thank you for commenting! I really appreciate hearing from others who have traveled our journey.
I just recently found your FB page and have been going back to review older videos. Your vlog today brought back memories that my sister in-law faced. All 3 of her children where diagnosed on the spectrum for 3 different reasons. She fought the school system for years to keep them in mainstream schools and had many strong conversations with IEP. I am happy to say they are all now 22, 24 and 26. My nephew who is 24 has the hardest struggles, but continues to make positive strides. His sister’s are excelling, 1 studying to be a nurse, the other is a beautiful ballet and tap dancer. Her dream is to be a Rockette someday! I love to see your day to day as a family. You are an amazing woman from where I sit, doing everything, everyday that you do to love, nuture, teach and protect Jess. Your daughter Hannah looks to be following in your footsteps. Be proud Val, you are not only a good mama, you are a strong, determined, caring woman. All the best, Suzanne
Thank you, Suzanne!
Your story makes my heart happy. Congratulations to you and your son, and keep anticipating further development. We see something nearly every day in Jessica that shows progress. Plus, she teaches us something all along the way.
Nonnie
Hi, I jut recently discovered your Instagram and I can’t begin to tell you how much your posts and Jess make my day. I work as a youth transition advocate for a Center for Independent Living in Illinois. & my job involves attending IEP meetings and helping parents advocate for their children, while also helping the young adults answer question like, “What comes after transition?” & “What do I want to do long term?” I identify strongly with the struggles you and Jess have experienced especially the lapse in programming and services after age 21. & unfortunately, many of the families I work with take for granted how far special education has come in the last 30 years and the assistance they are able to receive because of the ADA. But for every family that takes the ADA and IDEA for granted, there are families like yours fighting injustices that still very much persist and helping to increase awareness and normalize disabilities. Thank you so much for sharing your triumphs, struggles, & experiences because I & the families I work with feel them too. Jessica’s story matters and it needs to continue to be told.
Thank you!
I’ve waited to post comments because there’s so much to say, and it’s all so tough.
There’s an avalanche coming as the population of autistic adults leaves school and tries to transition to the next step. The status quo is not acceptable for families with adults who are totally dependent.
I’m glad you’re doing this, and I truly believe this blog will help other parents and families.
Again, I’m extremely proud of you.
Mama
Valerie, you have always been so strong. I’m sure you and Jess have paved the way for others here in our little town. The times I’ve been around her she has been precious, just as her mama. I hope you know how much I have always admired you!
I went to school with Jessica beginning in kindergarten. I remember them teaching us how we could use Braille to count in math. I still remember that technique today and showed my son when he began adding and subtracting. I love ready about your adventures through the special education system as I had a little sister with a disability that went through some struggles. I look forward to reading more about Jess.
Mandy, It’s nice to hear that you remember Jess! Thanks for following my blog. I’m really glad you are enjoying it. I am enjoying writing, although it is somewhat painful to relive it as I recall to put it into words. I truly hope that over time my stories will help many people navigate through the system.
Valerie this is awesome! My pride for you continues. I loved being a part of your life when we were children, tweens and teens. And then when you became a mom I have had the privilege to be a part of Jessica’s life. She is a joy. And I have loved watching you raise Jessica and work so fiercely to give her the life she deserves. Thank you and your family for sharing Jessica’s story. It needs to be heard.
Thanks so much Vickie! I was looking through my photos this morning and saw the one of you holding newborn Jess when you came to visit us in the hospital! I appreciate your support and you sharing my blog!!
You are a very strong woman and jess is a loving adult because of you. As a parent with an adult (18) with Autism, I have laughed more than most in my lifetime. Most people think what Logan says OUTLOUD!! .It is embarassing but at the same time, reality sets in. Everyone has been so wonderful at Boynton, HMS, & HHS. You paved the way for Logan and everyone else that came along after Jess. Our kids are better kids because of you. Our schools are better schools because of you. Our teachers are better teachers because of you. Thank you for your journey and for sharing it with us.
Thanks so much Danielle! Jess is so much fun (most of the time). Her responses to things are so literal it almost always cracks me up.
I do hope our path with Jess helped paved the way. That hope always gave me comfort during low times.
I will always remember Jess and her accomplishments at RMS! Her ability to navigate the 1\4 mile hall ways and find my office to deliver various items was a first for her! Her reward was a piece of candy. Probably not the best reward but it served the purpose and she was on her way for more and more independence in life. She has always remembered me and gives me a hug when I see her! God bless your family-As JESS has blessed me! Please give her a hug for me!
Thanks Dr. Potts! I’ll always remember the day she went missing inside the school because she left the room to walk all that way by herself to get that candy! I know she has a lot of good memories of you and RMS!